The Ethics of Consent and Choice in Prenatal Screening [1 ed.] 9781443827683, 9781443826488

Citation preview

The Ethics of Consent and Choice in Prenatal Screening

The Ethics of Consent and Choice in Prenatal Screening

By

Eleanor Milligan

The Ethics of Consent and Choice in Prenatal Screening, by Eleanor Milligan This book first published 2011 Cambridge Scholars Publishing 12 Back Chapman Street, Newcastle upon Tyne, NE6 2XX, UK British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Copyright © 2011 by Eleanor Milligan All rights for this book reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the copyright owner. ISBN (10): 1-4438-2648-0, ISBN (13): 978-1-4438-2648-8

TABLE OF CONTENTS

Introduction ................................................................................................. 1 Chapter One................................................................................................. 5 Consent, Choice and the Context of Prenatal Screening Chapter Two .............................................................................................. 17 An Ethical Orientation Chapter Three ............................................................................................ 29 Prenatal Screening: The Technical Lens Chapter Four .............................................................................................. 41 Consent and Choice: Philosophical Constraints Chapter Five .............................................................................................. 61 Consent and Choice: Institutional Constraints Chapter Six ................................................................................................ 89 Consent and Choice: Social Constraints Chapter Seven.......................................................................................... 121 Consent and Choice: Personal Constraints Chapter Eight........................................................................................... 149 Informed Consent and Patient Education in Clinical Care Chapter Nine............................................................................................ 183 Transforming Practice Epilogue................................................................................................... 219 References ............................................................................................... 221 Index........................................................................................................ 245

INTRODUCTION

‘This technology turns every user into a moral philosopher as she engages her fears and fantasies on the limits of mothering a fetus with a disability’ (Rapp, 2000, p.128).

The title of this work firmly positions it as applied ethics research. The questions raised by the routine implementation of prenatal screening are ethically significant because they potentially have an impact on human being and becoming that reaches beyond the obvious individual consequences. Prenatal screening impacts ethically upon the status of new human life, on the lives of mothers, couples and families, and on society generally in terms of the human values that are supported or denied by its practice. If the moral form of life is intimately entwined with a sense of the indisputable uniqueness and ‘inalienable preciousness’ and dignity of each human being as Raymond Gaita (1999, p.4) suggests, then the critical questions raised by prenatal screening technologies such as, who is permitted to be born, under what circumstances and conforming to which pre-conditions of entry to the human race are imposed, are inherently ethical in nature because they strike at the heart of our understandings of what it is to be human. To be allowed to exist (or not), for life to be valued in all its diverse forms solely because it is human life (or not), to be given the chance to grow and become, to live an embodied, embedded life (or not) may not be a presumed human good. With the advent of prenatal screening technologies, the creation of life may no longer be regarded as a matter of biological chance or of divine mystery, but increasingly in the mechanical, biological model, viewed through the reductionist lens of science, nascent human life may become objectified, leaving it open to technological manipulation and control. This previously untouchable and seemingly random natural process now falls under human scrutiny, judgement and control. Consequently, notions of personal ‘choice’ and preference have become further entrenched into our reproductive expectations. Not only can we choose when or how many children we have, there is now a growing

2

Introduction

expectation that we can also choose which type of child we are willing to accept. Such choices, framed in socially entrenched prejudices governing which traits are desirable or undesirable in our offspring create a moral space in which the destruction or removal of such a life seems the technically and philosophically rational thing to do. When the ethical nature of ‘choice’ is considered within an analytical philosophical framework, rationality becomes the ultimate arbiter of which choice is better, or more rational, than another, but whose rationality should we privilege? In trying to forge humane and ethically responsible use of this technology, will we make the realisation as Kass (2002, p.17) does that ‘not all human dignity consists of reason or freedom’. The choices offered or denied, however, are not ours alone to pursue. In order to make these technologically mediated choices a practical reality, individuals are dependent upon the technical expertise of others. Clearly technology has brought significant gains to our understandings of the human condition; however the potentially dehumanising gaze of technology, driven by a pursuit for perfection and the rejection of the imperfection of disability, cuts to the core of human dignity and is already blurring the boundaries of the sanctity, or preciousness, of human life. We now have the knowledge to detect and diagnose certain disabilities prenatally and the power to ‘prevent’ the presumed pain and suffering that accompanies them. Tentatively ‘wanted’ and ‘planned’ children may become unwanted and unplanned on the strength of a test result (Asch and Wasserman 2005; Katz - Rothman 1986). While some limited conditions may be treatable prenatally, couching prenatal screening as a means of promoting such early intervention is disingenuous because the genetic anomalies targeted are, as yet, inherently ‘unfixable’. With pregnancy and parenthood taking on the overtures of a well executed project, Kass remarks, ‘ a society that when it does procreate, that sees its children as projects rather than gifts is unlikely to be open to the question of meaning and dignity of procreation’(Kass 2002, p.20 ). Through technology, we have been invited to redefine our understandings of what a suitable body is, and for some, the expectations of what constitutes a suitable body for our children to be born into have been significantly influenced by access to prenatal and genetic screening. Indeed some commentators argue that we parents have a moral obligation to choose children with the best genetic prospects, or even intentionally enhance the genetic makeup of their future children where technically possible (Green 1997; Aldred, Savarirayan, and Savulescu 2003;

The Ethics of Consent and Choice in Prenatal Screening

3

Savulescu 2001). Rather than accepting the wholeness of humanity as incorporating differences, we are perhaps swayed by the promise of technologically mediated perfection for our children. However, as previously discussed, our bodies are not merely objects or machines; they are the site of our human being in the world. As such, any purely mechanistic view of disease, illness or imperfection detached from the ontological realities of being, will fail to incorporate the essential humanistic understandings, of the deeply connected, embedded and relational realities that define the human condition. When mechanistic understandings of the body are coupled with a similarly mechanistic approach to ethics, the creation of the required open reflective moral space will be stifled. While Kass (2002, p.10) was commenting on the use of human embryos as raw materials for use in medical research when he stated, ‘we are desensitised and denatured by a coarsening of sensibility that comes to regard these practices as natural, ordinary and fully unproblematic’, his comment could similarly apply to prenatal screening technologies. We should be equally wary of embracing ‘soft’ technologies, such as the noninvasive forms of prenatal screening that encourage us to judge who is worthy of being born because as Ruth Hubbard (1988, p.234) notes, ‘We do ourselves an injury, as individuals and as a society, if we let fear of difference tempt us to decide “who should and should not inhabit the world” because it is hubris to pretend that we have the knowledge and foresight to make such judgments well’.

We are faced with the ethical reality of balancing the indisputable goods that medical technology can offer through the prevention of disease with the potential harm that human life may be dehumanised and disrespected in the process. Charles Taylor (1989) further observes that the difficulty in pursuing the ‘good life’ is often not the need to discern good from bad, but rather negotiating the moral conflict that arises when judging between competing goods. The questions of how we ought to consider and respond to these competing goods are ethical questions, thus they invite ethical answers, but what kind of ethics and how should we consider these competing potentials for good? While medical science asks ‘can we’, ethics uniquely challenges us to decide whether what we are doing is affirming or damaging. Thus the ethical landscape we create and the ethical legacy we leave doesn’t depend upon free rational choice so much as it depends on which choices are made, or made available. Therefore, the role of ethics in our society is to provide a framework

4

Introduction

through which the moral dimensions of our daily lives may be articulated and understood, then incorporated into a constructive response to shape better lives.

CHAPTER ONE CONSENT, CHOICE AND THE CONTEXT OF PRENATAL SCREENING

‘Women are situated on the research frontier of the expanding capacity for prenatal genetic diagnosis, forced to judge the quality of their own foetuses, making concrete and embodied decisions about the standards of entry into the human community’ (Rapp 2000, p.3).

The development of prenatal screening technologies has been described as ‘simultaneously liberating and eugenic’ (Rapp 2000, p.2). They are liberating in that they can provide a means by which some parents may conceive or give birth to the healthy child they desire, but may be considered eugenic as, in the absence of the ability to ‘cure’ or treat certain physical or genetic conditions that may be diagnosed, choice is predominantly realised through the selective termination of those foetuses judged to be physically or genetically undesirable. Whichever interpretation is adopted, it is evident that the burgeoning practice of prenatal screening straddles an ethical divide. The presumption that the technologically mediated goal of preventing disability is ‘desirable and defensible’, and a worthy pursuit that in no way passes judgement on existing people with disabilities is widely disseminated and claimed to be generally shared in society (Parker, Forbes, and Findlay 2002, p.10; Savulescu 2001). However, the means by which such prevention is achieved, the entrenched social prejudice it can instil, and the eugenic stance within are strongly contested by many commentators writing from a disability rights perspective (Shakespeare 2001, 1999; Hubbard 1988; Shakespeare 1998; Parens and Asch 2000; Newell 2003; Bridle 2004; Newell 2007; Kenen 1999). James LindemannNelson (2003, p.3) further cautions, ‘According people the respect they are due is a matter of general importance, and we ought be especially scrupulous when people who have endured a history of negligence and abuse claim that they are yet again being demeaned’.

6

Chapter One

When the nature of the much hoped for ‘prevention’ comes in the form of terminating an existing foetus or embryo, ‘prevention’ takes on a radically different and increasingly controversial meaning; clearly a more extreme form of prevention than a measles inoculation for example. Thus, in being invited to embrace the technology of prenatal screening, women are placed in the unenviable position of making ‘concrete and embodied decisions about standards of entry in the human community’ as Rapp (2003, p.3) noted earlier. Markens, Browner and Press (1999, p.367) similarly describe this choice as ‘engag(ing) in risk assessment which can determine the life and birth of future generations’. The factors that shape this ethical divide between the culturally endorsed views of technology as irrefutably ‘choice enhancing’ and good, and the moral unease of prejudicial, discriminatory and stigmatising practices directed against people with disabilities, expose complex ethical questions that challenge our most fundamental understanding of what it means to be a human being. These questions are fundamentally ethical in nature and they form the social and cultural backdrop of this work. Generally across all forms of medical intervention, the widely accepted and favoured safeguard against possible ethical impropriety, or in the case of prenatal screening accusations of coercion and eugenic intent, has been to focus on obtaining a patient’s informed consent prior to any proposed intervention (Marteau and Dormandy 2001). A prior consideration to our reliance on informed consent as a legal and ethical safeguard is that the intervention in question is not contrary to the accepted public order or shared sense of moral good. Only when an action does not breach the law, or breach codes of moral action in a society can a person be considered at liberty to give their voluntary consent. While prenatal screening is widely practiced and accepted in our society, and provided by public health institutions which convey societal endorsement of this practice, some disagreement lingers as to the inherent ethical acceptability of selective termination on the grounds of disability (Wertz 1998; Wertz and Fletcher 1998; Lippman 1991; Caplan 1999; Hubbard 2001; Asch and Wasserman 2005; Clapton 2003). The tensions surrounding the ethical acceptability of prenatal screening are acknowledged throughout this work; however, a definitive answer to these divisions will not be provided. Rather, the ethical tensions inherent within current practices will be explored, and some practical responses which may support all women to act within their own moral frameworks when confronted with the moral

Consent, Choice and the Context of Prenatal Screening

7

choices inherent within the offer to undergo prenatal screening will be considered. When a proposed intervention is legal, conform to public policy and community standards of ethical behaviour, the conditions of informed consent prior to any medical intervention articulated in the medical ethics literature generally embrace the following five1 criteria; • •

that a patient must be competent to decide, that all material information about the proposed intervention must be disclosed, • that participation in proposed intervention is optional and voluntary, • that the patient fully understands the nature and potential benefits, risks and alternatives to the proposed intervention, • that consent is active, and given freely without coercion (Beauchamp and Childress 2001; Mitchell, Kerridge, and Lovat 1996; Jonsen 1998; Manson and O'Neill 2007). Hence, a patient giving their informed consent, granted freely from a position of knowledge and understanding to undergo a particular ‘treatment’, has come to represent that any proposed intervention is ethically robust as the above mentioned conditions of competence, voluntariness and understanding are presumed to be implicit within its application. The routine seeking informed consent by health care professionals is further regarded as proof that patient autonomy has been respected, while the realisation of informed consent in practice is presumed to support individuals in their capacity to intentionally make important decisions and pursue their own individual goals in a way that is consistent with personal moral frameworks, free from control or manipulation. The pre-conditions of voluntary and knowledgeable participation are believed to be inherent within prenatal screening protocols. However, research from around the globe into the motivations and understandings of women engaging in prenatal screening suggests that while many women do indeed participate in screening regimes, a significant number cannot articulate the purpose or potential outcomes of testing. This well established research into the motivations and experiences of women participating in prenatal screening programmes commonly reveals a lack of reflective understanding, passive compliance with a routine normative 1

In law, three pillars are generally cited being competence, information and voluntariness, however, the ethics literature commonly cites the five listed above.

8

Chapter One

pathway and an apparent inability to articulate the purpose, justifications or potential problems of the testing they have participated in (Santhalahti et al. 1998; Stapleton, Kirkham, and Thomas 2002; Press and Browner 1997; Markens, Browner, and Press 1999; Williams, Alderson, and Farsides 2002; Bernhardt et al. 1998; Harris, Connor et al. 2004; Santhalahti 1999; Kohut 2002). The tacit expectation of participation that routine screening conveys further obscures the optional nature of screening while the poor knowledge levels reported significantly challenges any comfortable presumption of ‘informed’ engagement. The belief that participation may be equated to ethical integrity as claimed by some commentators (Cuckle 1995; Whynes 2002) thus seems exaggerated. As informed consent protocols have gained precedence primarily through the courts, a significant barrier to fulfilling the ethical intentions of informed consent in an institutional setting is the strong defensive legal bias which has influenced the organisational implementation of consent protocols. The ethical standard of informed and understood consent cannot be presumed to be inherent within the minimal legal criteria for informed consent in the area of prenatal screening. The legal bias which permeates practice often engulfs the more subtle moral or ethical negotiations required from the patient – physician exchange (Wear 1998). Indeed some commentators openly describe existing informed consent protocols as merely “empty bureaucratic rituals” (ibid), the main purpose of which is to provide a defensive legal document or form of insurance against malpractice suits, while paying superficial concern to the moral dimensions of care (Gillott 2001; Kenen 1999; Press and Browner 1995). When the motivation to procure consent is primarily driven by the legal goal of averting litigation, or fulfilling organisational policy requirements, rather than proactively equipping the patient with the necessary understandings to make decisions that are medically and morally coherent for that individual, the clash of motivation between those seeking consent and those giving it can create a conflict of interest that may further widen the existing ethical divide. There are a number of practical problems in actualising informed consent in the clinical context of antenatal care. Entrenched institutional pathways such as the routine nature of screening may obscure voluntariness; overt and covert counselling may be subtly coercive while the predefining of certain outcomes as unacceptable may limit possibilities and narrow the boundaries of tolerance. Additionally the lack of genuine access to alternative pathways delimits which choices are permissible; limited time for consultations often prevents the formation of effective

Consent, Choice and the Context of Prenatal Screening

9

communication partnerships and poor access to adequate education and knowledge building converge to create a situation in which women’s individual agency may be profoundly constrained. Within the wider context of health care, low levels of informed consent are commonly observed across many fields of medical intervention and compelling evidence of failure to achieve ‘informed consent’ persists across an extensive variety of medical interventions and disciplines. Disturbingly low figures in meeting the ethical requirements of informed consent have been reported at 0.5 % success for ‘complex’ decisions, defined as having extensive effect on the patient with uncertain and multiple outcomes, and reaching a mere 26% success for simple decisions where the effect is minimal and the outcomes are clear and singular (Braddock et al. 1999, p.p.2315-7). Using Braddock et al’s (ibid) descriptors, the decision to undergo prenatal screening may be regarded as complex, as the potential outcomes are numerous and uncertain, and the consequences may indeed be personally significant. Although the accepted protocols may meet the minimum legal or administrative requirements, evidence suggests that they commonly struggle to fulfil their ethical purpose of preserving patient autonomy and empowering the patient with the right to intentionally embrace or reject the intervention on offer (Braddock 2002; Braddock et al. 1999; Wear 1998; Bottrell et al. 2000). The potential consequences of ill informed compliance with prenatal screening for women include short and long term anxiety or depression; alienation and feelings of coercion (Goel, Glazier, Summers, & Holzapfel, 1998; Kowalcek et al., 2002; Watson et al., 2003). The failure to implement robust informed consent protocols that genuinely uphold and promote individual capacity for morally coherent decision making therefore has real potential to harm. These observations invite further consideration of the underlying presumptions, conventions and ethical intentions inherent within ‘informed consent’. Critically, they also raise questions about the role that ‘informed consent’ may play in preserving individual autonomy via the right to decide about treatment options, of protecting individuals from coercion and manipulation. The historical roots of requiring a patient to give ‘informed consent’ to participate in medical research were first outlined with respect to medical research in the Nuremberg Code (Manson and O'Neill 2007; Beauchamp and Childress 2001, p.77), and later in the

10

Chapter One

Declaration of Helsinki2. These Codes significantly position informed consent as a process of ensuring patient autonomy and freedom ‘from’ control, rather than their freedom ‘to’ pursue independent and intentional goals. It is the protective ‘freedom from’ stance that appreciably defines respect for autonomy in the medical ethics literature, although as outlined above, this appears not to be commonly achieved in clinical practice either generally or with respect to prenatal screening protocols. Despite the mounting evidence that ‘informed consent’ protocols in their current form have enjoyed limited practical success to date (Manson and O'Neill 2007; Wear 1998; Braddock 2002), or that broader philosophical concerns exist about the defining features of autonomy or the merit of elevating individual agency and personal choice as the privileged means of shaping our collective moral direction, the ethical ideals of informed consent and autonomy hold considerable merit within broader Western social frameworks. Thus, ways to promote their actualisation, by seeking fuller understandings of the numerous and complex overlapping and interwoven constraints embedded within the broader social, institutional and personal domains that have stifled their realisation in practice need to be identified and incorporated into a more functional and responsive framework. It is proposed in this work that the problems observed in actualising informed consent do not entirely with the conceptual foundations per se, but more likely within the thin, reductionist, often cursory and inadequate support and organisational infrastructure directed at achieving ethically coherent informed consent in practice. The ethically adequate and socially inclusive ‘process’ of negotiating informed consent, as opposed to the minimal legally adequate administrative ‘event’ of obtaining consent, has the potential to equip patients with the necessary understanding to make ethical decisions in accordance with their own moral frameworks. Thus informed consent and respect for autonomy remain desirable and necessary prerequisites to ethically robust medical intervention. The critical question remains how we may support their actualisation in practice. Flowing from the observations above, the questions posed in this work were founded on the combined observations that: 2

See World Medical Association. Ethics Unit Declaration of Helsinki. 2007. http://www.wma.net/en/30publications/10policies/b3/index.html. Retrieved 20-0810. See also (Goodyear, Krleza-Jeric, and Lemmens 2007) for comment on the most recent changes to the Declaration.

Consent, Choice and the Context of Prenatal Screening

11

• Prenatal screening, with its invitation to judge which characteristics are desirable in our future children, raises deeply complex and sensitive ethical issues which strike at the heart of individual and collective understandings of human being and becoming. Robust ethical standards must therefore be applied to this increasingly routine, but potentially ethically contentious, pregnancy intervention. • While respecting patient autonomy through eliciting informed consent is valuable in preserving individual capacity and diminishing coercion or manipulation, current protocols as described in the published literature appear to have significantly failed to support patients in achieving a voluntary, understood and active participation in medical interventions both generally, and in the specific case of prenatal screening. The lack of informed consent does not automatically suggest that the patients’ wishes have been violated (Schneider 1996); rather, it flags that the presumed ethical safeguard, in its current actualisation, may be less effective than believed. • Developing robust informed consent protocols to support the humane, ethically inclusive and transparent use of prenatal screening technology may require us to rethink the current individualistic, legalistic and ethically reductionist approaches to consent. This will require a reorientation of collective understandings of autonomy as unencumbered individual choice, towards acknowledging autonomy as deeply relationally embedded and constrained, socially contextualised and subjectively interpreted. It also requires explicit recognition of the multiple underlying social, personal, institutional and philosophical constraints that impinge upon the practical realisation of autonomy, consent and choice. If these obstacles are to be meaningfully addressed and minimised, they must first be openly articulated. • If informed consent is based upon patient understanding, any commitment to strengthen informed consent protocols demands that we address the question of ‘how’ to effectively inform. Furthermore, we must remain cognisant that ‘what’ information becomes worthy of informing is significantly pre-filtered through various cultural, historical and institutional interpretive lenses. As becoming informed, and gaining reflective understanding, is a process of learning, the insights offered through educational philosophy and cognitive theory may provide a suitable platform to strengthen informed consent. The crucial ethical distinction between minimalist forms of information disclosure and the fuller moral requirement of reflective understanding of the personal implications of any proposed intervention may then be

12

Chapter One

supported within the organisational infrastructures that women encounter during pregnancy. • The ethical transformation of practice must be acknowledged as occurring simultaneously at the individual and institutional levels, as in reality they are interdependent, each partially defining, constraining or supporting the other. This work sought to examine the deeply embedded social and ethical elements that shape the burgeoning practice and unspoken presumptions fuelling the rise of prenatal testing. While the applications and inventions of this technology have been described as a ‘new’ revolution, they are arguably influenced by some very old, historically significant and deeply entrenched prejudices and practices. As collective (mis) understandings of new technologies colonise our expectations of the controls we imagine can be imposed on the human condition, the criteria of what is an ‘acceptable’ life, and ultimately the choices we make of what constitutes a suitable body for our children to be born with permeate our judgements. Against a cultural backdrop in which the value of individual choice is privileged, in which an unborn child has no recognised legal status3 and in which consumer demands drive individual and collective expectations of clinical care, careful consideration of how and why such tests are developed, offered and accepted demands further exploration. As women and their unborn children are the sole recipients of these prenatal interventions, this research sought to illuminate how the ethical dimensions of existing prenatal screening practices and procedures were received specifically by women locally. As women’s experiences may be critically shaped by the presumptions, prejudices and attitudes of their health care practitioners, the motivations, experiences and beliefs of a cohort of health care providers was also canvassed. The combined consideration of a range of experiences collectively illuminated many social, cultural, historical and philosophical presumptions that inform practice today. As the underlying tenets of ‘informed consent’, voluntary and understood participation, are broadly accepted as representing a high standard of ethical care in medical practice, genuinely facilitating informed decision making remains a critical concern in the practice of ethics across all forms of medical care.

3

In Australia.

Consent, Choice and the Context of Prenatal Screening

13

Within the realm of prenatal screening the constraints that shape and mould how choice is constructed and whether informed consent is supported may be loosely categorised into four porous groups being: Philosophical constraints arising from the often thin and narrow interpretations of the ethical as realised through the exercising of personal autonomy, choice and informed consent. Further compounding these issues, the atomistic connotations implicit in the dominant interpretations of the philosophical concept of autonomy entrenches an individualistic view of the self which undermines the deeply related and embedded nature of decision-making. As outlined in Chapter Two, the danger in adopting an intellectual commitment to externally imposed philosophical reason at the expense of hermeneutically aware, collaborative negotiation may potentially narrow the view of what is permissible as an ‘ethical’ issue. Finally, by representing moral decision making as a detached and singular event rather than an ongoing, evolving, embodied and embedded process with far reaching relational consequences, the ethical considerations that precede clinical intervention may have become undermined. Institutional constraints include the routine nature of testing which obscures voluntariness, hierarchical power dynamics within institutional settings both inter-professionally and between patient/carer, and overt and covert counselling. Additional institutional constraints include poor educational opportunities for practitioners and patients, blurred accountability amongst various practitioner groups for informing, inequity of access to testing and the ever present time constraints of production-driven models of institutional care. Social constraints emanate from the realisation that the choices made available to women are significantly delimited by societal and peer expectations of ‘responsible pregnant behaviour’ (Lippman 1991). Trust in science to deliver a healthy child becomes enmeshed with maternal and practitioner feelings of blame and responsibility if a disabled child is undetected, as embracing technology may abrogate blame. Poor understanding of disability, the predefining of certain physical/intellectual conditions as unacceptable, and inadequate social support for disabled persons further shape behaviour, behaviour that is deeply influenced by the political, legal, historical and cultural contexts in which such practices evolve. These social precursors to how

14

Chapter One

screening is developed, presented and interpreted remain under acknowledged in the dominant and de-contextualised account of ethics. Personal constraints include the socially constructed ‘need’ to be reassured, the ‘self evident’ need to screen to reduce the increased levels anxiety that flow from the discourse of risk that surrounds pregnancy, poor understanding of the probabilistic and statistical language of risk, and a lack of familiarity with the medical procedures, processes and terminologies that the mother may encounter. These multiple and potentially choice constraining considerations overlap and interweave, mutually feeding each other in the complex web of constructive and destructive interactions that ultimately direct individual perception, behaviour and ‘choice’. Additionally, the critical combinations that culminate in a woman experiencing constrained agency or diminished choice occur differently for different people. Consequently these constraining features cannot be rigidly considered as linear or hierarchal. Rather, they are subjective, inter-subjective and interplaying, further invoking Gilligan et al’s (2003) notions of simultaneously cooccurring and contrapuntal threads that may create a unique pattern of either resonance or dissonance. However, if our aim is to understand and support ethical decision making in antenatal care locally, we need firstly to understand the various sources and potential consequences of these constraining factors, to articulate their role in the shaping the actual practice encountered by pregnant women and their practitioners, and to assess whether the constraints identified in overseas research are echoed locally. Each of these four areas will be considered in more detail in chapters 4-7.

Chapter Summary Based on an initial literature review, it is suggested that the current response of incorporating legally driven, administratively framed and ethically reductionist informed consent protocols into existing routines has failed to create an environment in which the individual and communal ethical concerns about the potentially socially divisive or eugenic outcomes of prenatal screening technologies may be meaningfully considered. Numerous overseas studies have revealed that, while up to 90% of women in developed nations are believed to undergo some form of prenatal screening to assess the health if their unborn child, significant numbers do not understand the purpose or potential outcomes of the

Consent, Choice and the Context of Prenatal Screening

15

testing received. The presumption that participation alone equates to informed consent, which in turn assures ethical probity, is therefore flawed as the espoused ethical standards required within the biomedical definitions of ‘informed consent’ of voluntariness and reflective understanding appear to be rarely achieved in practice. When the ethical principle of autonomy, realised through the exercising of informed consent, is applied in a clinical and bureaucratic context that is unresponsive to, or perhaps unaware of, the personal, institutional and social constraints that exist, a persons’ capacity to engage fully in the moral decision making process may become eroded. Indeed, entrenched modes of treatment may leave little room to examine why certain interventions have become favoured or recommended at the expense of other options, such as the option not to screen, an alternative which may remain undisclosed (Pilnick 2004). Inadequate educational opportunities coupled with the lack of appropriate organisational infrastructure to support the deeply related, situationally dependent and embedded process of decision making may therefore undermine individual capacity to give considered and informed consent. Additionally procedurally entrenched discriminatory attitudes towards disability may promote narrowly defined constructions of normalcy that ultimately undermine a patient’s capacity for full moral consideration and active decision making in the context of prenatal screening. The subsequent harms which potentially flow on to women include avoidable anxiety, depression and possibly long term psychological trauma (Goel et al. 1998; Kowalcek et al. 2002; Watson et al. 2003). The predominant ethical considerations that emerge in the discussion of prenatal screening often centre upon whether this technology is eugenic in its gaze (Parens and Asch 2000; Asch and Wasserman 2005; Lippman 2003), whether treatment offers of termination are ethically contentious or whether this is yet another discriminatory form of social gate keeping aimed at selecting what ‘type’ of people are worthy of birth (Shakespeare 1998, 2001; Reinders 2000; Hubbard 1988). These questions certainly frame the broader context of why we as a society have pursued the development of such technologies. We are increasingly challenged by the ethical reality of balancing the indisputable goods that medical technology may offer through the prevention of disease, with the very real potential harm that human life, or potential human life, may be dehumanised, devalued and disrespected in the process. As Kass (2003, p.3) notes ‘distinguishing well from bad thus intermixed is often extremely difficult’.

16

Chapter One

While embracing the ‘technological imperative’ may hold great promise for the relief of pain and suffering, for improving quality of life, and for enhancing choice and well being for many, the challenge remains of how to promote the humane and ethical use of such technologies in ways that do not further re-enforce discriminatory, stigmatizing or de-humanising practices. As the capacity to prenatally diagnose continues to outstrip the capacity to cure, a commitment to openly reflect upon the inevitable ethical dissonance created will shape the ethical landscape we create and the ethical legacy we leave.

CHAPTER TWO AN ETHICAL ORIENTATION

‘Ethicists tend to leave the ‘facts’ of clinical medicine to the doctors; their task is then to apply elegant and compelling arguments drawn from first principles of ethics to these undisputed and indisputable facts. Unfortunately when the relationship between clinical medicine and ethics is conceived in this way, the result is a very sterile discourse’ (Hoffmaster 1991. p.213).

Prior to exploring the emergent ethical issues presented by the routine institutional practice of prenatal screening, or considering the role of ethics in shaping a response to the perceived moral challenges within, a clear account of ‘ethics’ as it is understood for the purposes of this work must first be articulated. According to Beauchamp and Childress (2001, p.1), ethics is best understood as a ‘generic term for various ways of understanding and examining moral life’. Within these ‘various ways’ there are many conflicting and competing accounts of ‘ethics’ based on different starting presumptions, offering differing explanations of what ethics is, how it ought to be practised and what its purpose and potential is. Clearly, the starting presumptions, expectations and understandings we have of ‘ethics’ critically influence how we attempt to ‘do’ ethics, yet as Isaacs (Isaacs 2003) notes, the most fundamental question of ‘how ought one to understand ethics?’ is largely unarticulated and simply taken for granted as a generally shared and unproblematic view. However, as flagged by Beauchamp and Childress (2001, p.1) above, ethics is not so simply categorised as one way of thinking, but rather incorporates multiple perspectives and foundational assumptions. Within the multiple definitions and prescriptions of what ethics is, the understanding that arguably dominates the medical and bioethics literature is that of a ‘theory centred’, knowledge based, abstract and generalisable

18

Chapter Two

application of moral principles. Such principles1 or theories may be held as points of reflection and guidance when considering ‘cases’ that present an ethical dilemma or quandary (Beauchamp and Childress 2001), and may be applied to reveal a consistent, considered and rational response to the ethical question ‘what ought I do?’ 2. While this notion of ethics appears to have permeated collective understandings3 and expectations in the field of medical ethics and bioethics, deep problems emerge when ethics is practised as an epistemological quest for moral knowledge and abstract truth. Most notably perhaps, is the attendant need to reduce the multifaceted and complex realities of ethical engagement to the sterile prescriptions of what Caplan (1982, p.8) describes as ‘moral engineering’, an approach which seeks to overlay moral theories and principles onto the (unproblematic?) ‘facts’ to reveal a dependable and generalisable moral truth. A further criticism of practising ethics as a form of detached intellectual and scholarly inquiry, is that this approach segregates ethics as yet another expert specialty, beyond the grasp of clinicians and patients who may lack the prerequisite analytical skills or philosophical language deemed necessary to contribute to such specialised discussions (Pellegrino 2003; Komesaroff 1995). In an era of increasing pressure to embrace collaborative decision making between practitioner and patient and to implement more ‘patient-centred’ practices (Stewart et al. 2003), perpetuating the separation of ‘ethics’ as another expert outsider discourse is ultimately unsustainable, as it potentially distances and excludes practitioners and patients from full participation in ethical decision making. This familiar approach to ethics, while firmly entrenched, remains disconnected from the ‘micro – ethical’ concerns (Komesaroff 1995) of the everyday clinic, and hence continues to attract criticism. 1

In western medicine and bioethics, the most commonly referred to principles of medical ethics are those proposed by Beauchamp and Childress (2001); autonomy, beneficence, non- maleficence and justice. It should be noted that Beauchamp and Childress do not regard the four principles as coherent ‘theory’, or prescriptive requirement, but rather a framework to initiate broader contextualised discussion. While this ‘Georgetown mantra’, as it is often referred to, has been heavily critiqued in North America and Canada, it still permeates the majority of professional codes of practice and conduct, and dominates the medical ethics discourse in Australia. 2 It should be noted that the ‘I’ of medical ethics literature predominantly refers to the practitioner ‘I’, rarely the patient ‘I’(Dodds 2000). 3 And notably numerous health care professional Codes of Ethics.

An Ethical Orientation

19

An ontologically grounded approach to ethics of the everyday defines the ethical as situated within a foundational framework of understanding that reflects the fundamentally social and relational, subjective and engaged nature of human encounters. While the former approach seeks to articulate those rational theories and principles that might anchor the ethical form of life as one of rational deliberation and decision making, the latter phenomenological account with its emphasis on acknowledging the hermeneutics of making meaning, seeks to intentionally embrace the deeply embedded and subjective nature of being that shapes individual moral decision making. Once we embrace the particular ontology of the self as related, dialogical, interpretative, and embedded in multiple contexts of history, culture, language, relationships, biology, time and spiritual horizons it becomes apparent that, while there may be shared moral frameworks, each individual has a unique and particular moral experience. The unique culmination of these layers of embeddedness shape individual moral frameworks for patient and practitioner alike and subsequently defines the plurality of ‘goods’ we affirm. It is the fusion of these multiple goods that determines how we interpret the ethical significance and meaning of life events. While strong individual moral frameworks are formed, these inextricably overlap with the shared social and moral space. It is therefore through accessing these multiple layers that fuller ethical understandings may be built and transformative ethical response may be forged at both the individual and societal levels. If, as Arthur Caplan remarks, ‘the resolution of moral issues demands more than the ability to marry moral theory with the facts’ (Caplan 1982, p.2), we must challenge ourselves to define and actualise the ‘more’ Caplan refers to. An approach to ethics such as that proposed by Isaacs and Massey (1994) recognises that interdependence and interconnectedness, as well as detached academic analysis, is both the starting point and the goal of any ethical conversation. As ‘the individual is whole only in a world of others’ (Cassell 1991, p.26), an ethical framework that is founded on this most basic human understanding may provide a more resonant and accessible framework from which to respond to the shared ethical consequences of individual and communal choices such as those inherent with the practice of prenatal screening. Isaacs and Massey (1994), propose that engaged ethical encounters have four dimensions; the appreciative, the appraisive, the hermeneutical (interpretive) and the transformative. While traditional philosophical approaches seek theoretical solutions, Isaacs and Massey (ibid) propose

20

Chapter Two

that applied ethical questions are invariably social, not solely intellectual, and therefore invite practical, not solely theoretical responses. Through embracing the four dimensions above the ethical question considered becomes ‘how can we respond?’, rather than the detached individualistic ‘what ought I do?’ that emerges from the analytical model. As perceptions and judgements are not value free, but rather reflect prior contextualised understandings and experiences, the hermeneutical dimension invites us to develop understanding of the multiple interpretive lenses that each stakeholder brings. The appreciative dimension seeks to promote appreciation of each stakeholder by actively recognising the others’ humanity, dignity and unique presence. Isaacs and Massey (ibid) further note that it does not automatically follow that we agree with, or endorse, every perspective. Rather the aim of any human encounter is to appreciate and understand the multiple histories that shape it. The appraisive dimension recognises that ethical engagement ultimately involves judgement or evaluation. Finally, the transformative dimension calls upon us to take action to prevent the unethical and respond with strategies for reform from an informed position of appreciation and understanding. Thus applied ethics research is focused on ‘continuing enhancing of the other and the self within the social condition as it is actualised within specific situations, roles, practices, institutions and cultures’ (ibid, p.2). The applied ethics framework proposed by Isaacs and Massey (1994) thus provides a theoretically coherent and practically functional structure from which to explore, describe, understand, explain and potentially transform the ethical dimensions of clinical practice, in this case the particular practice of prenatal screening. In applied ethics research such as this, if we hope to understand individual moral concerns and respond in a meaningful way, the importance of entering into dialogue with another as a way of appreciating their unique perspective becomes paramount. Hence, there is a critical link between the embedded, embodied, related and dialogical view of ontology offered by the phenomenologists and the importance of narrative as means of opening the moral space of shared understanding that underpins ethical care. As narrative invites us to enter and appreciate each other’s understandings, conversation and dialogue provides an appropriate entry portal into the world of another’s experience and knowledge. Charles Taylor (1989, p.38) further explains, ‘the nature of our language and the fundamental dependence of our thought on language makes interlocution in one or other of these forms inescapable for us’. The philosophical

An Ethical Orientation

21

orientation adopted is supported by the use of a narrative research methodology as the most appropriate mode of ethical inquiry. As the aims of this research were not only to observe and describe, but rather to understand with a view to transform, the Isaacs and Massey (1994) engaged approach to ethics, coupled with a narrative method of inquiry is the most appropriate vehicle to critically explore the complex, subjective and inter-subjective factors which shape the ethical dimensions of prenatal screening.

Narrative and Ethics ‘Narratives in moral thinking come before, during, and after moral generalities (whether of theory, principle, or basic moral concept). They permit and invite full exploration of what often seems neglected or devalued on the engineering model: specific histories of individual commitment, of relationship and responsibility, of institutional practices and evolving moral tradition…...Emphasis on narrative construction pulls in the opposite direction--from premature or coercive streamlining of cases toward enrichment of context and detail’ (Walker, 1993, p.35).

The Moral Significance of Narrative A significant feature of applied ethics research is that it recognises individual participants as having unique personal moral values and experiences, all of which are embedded in their particular historical, cultural, political, economic and social contexts. Consequently, there is not one rational way to be, but rather a wide plurality of ways, hence the ‘goods’ we seek are not singular but rather pluralistic. From a research perspective, if we hope to hermeneutically and appreciatively engage in another’s story, we may only access this unique perspectival stance through listening to their voice. Thus if ethics is fundamentally embedded in relationships, and if we are as Taylor (1989) and Bruner (1991) claim essentially narratively constructed and dialogical beings, then voice4 must lie at the heart of ethics (and ethical) research because language underpins our ontological understandings as moral beings. As shared understandings are sought, the language and discourse that shapes meaning in this context becomes a central focus of ethical enquiry. Therefore, dialogue and narrative analysis form the central strategies of this approach which seeks

4 Among the various voices, the ‘voice of reason’ is just one of the many contributing voices to be heard, rather than the dominating voice.

22

Chapter Two

to uncover tacit meanings and understandings within the broader social and particular individual contexts. Isaacs (2007) explores the link between language, context and moral engagement saying, ‘Language makes possible our being and becoming. Language mediates the good life. But language is itself mediated through others. And such encounters are only possible because we are, or stand in conversations with these others. We are, accordingly, dialogical beings and our being and becoming is significantly that of a dialogical being and becoming’ (Isaacs, 2007, p.7).

In considering how human beings construct meaning from the experiences that weave the fabric of their everyday lives, Bruner makes the point, ‘we organise our experience and our memory of human happenings mainly in the form of narrative – stories, excuses, myths, reasons for doing and not doing, and so on’ (Bruner 1991, p.4). Andrews further reiterates this point claiming that, ‘if we are constructed by stories, or are storytellers by nature, or perhaps both, then narrative must surely be a prime concern of social research’ (Andrews 2000, p. 1). Thus narrative invites us to enter into the being and becoming of the other in the totality of their embodied and embedded realities. It opens the possibility of sharing, understanding and appreciation of the complex and unique lived reality and plural moral frameworks that are unique to each human self. It further enables the expression of experiences of loss, suffering, or oppression to be voiced, especially by those who may feel disempowered or silenced. Finally, narrative opens up new meanings, new possibilities and new sensibilities for collective and individual moral insight and growth. Therefore, narrative methods of research complement the ethical orientation of this work, opening a fitting way to explore the richness, particularity and uniqueness of individual experiences. In other words, dialogue opens a moral space to particular ontology, and as this research is concerned with exploring particular experiences as shaped by broader social contexts, a narrative method of inquiry practically and theoretically supports the ethical orientation of this research. Importantly though, narrative is widely recognised as significant in enhancing ethical understandings (Urban - Walker 1993, 1998; Tomlinson 1997; Brody 2002; McMillan and Gillett 2002). As sharing experiences through dialogue may improve our common understandings and open us

An Ethical Orientation

23

to the rich complexities of each others lives, our ethical judgements may be better informed. Tomlinson (1997) further notes that narrative awakens our moral sensibilities, so that we can better appreciate any perceived ‘wrongfulness’ of the story being told. Thus narrative and dialogue are pivotal in shaping the ethical agenda (Taylor 1989; Widdershoven and Smit 1996).

Narrative Methodology (From Latin narrƗre, narrƗt - from gnƗrus, knowing) ‘(We cannot underestimate) the importance of having research strategies that can work with the narratives people use to understand the human world. Although this perspective presents a problem for the research models to which we have grown accustomed and in which we take pride, it opens up a realm for understanding human beings that will, I believe, make our research considerably more successful’ (Polkinghorne, 1988, p.xi).

This work sought to explore a range of critical ethical questions emerging from individual stakeholder’s experiences with prenatal screening. In terms of the applied ethics framework proposed earlier by Isaacs and Massey (1994), this research may be seen as attending to the hermeneutic, appraisive and transformative dimensions of the ethical encounter. It is not therefore specifically concerned with finding ‘the’ definitive answer to specific research questions, or as Darbyshire suggests to ‘lay out causal explanations in theoretical terms’ (Darbyshire, 1994, p.860). Rather, the aim of this project is to embrace a hermeneutic approach which fosters deeper understanding of the lived experiences of individual participants as a conduit to uncovering the ethically problematic aspects of the prenatal screening protocols and practices. In turn, new insights and possibilities from which to transform and strengthen the ethically challenging aspects of prenatal care may be gleaned and potentially relevant sites of future inquiry may be identified. In understanding the hermeneutically layered nature of human being and becoming, the phenomenological account of ontology embraced throughout this work further acknowledges the core importance of language and narrative in the construction of the self as essentially a dialogical self (Taylor, 1988, 1989). Language and narrative significantly mediate the plurality of goods we affirm individually, but importantly, they also mediate and define the communal ethical encounter. Inviting participation in a shared moral space, narrative accommodates the pluralities of understandings of what is ethically ‘good’ and thus promotes

24

Chapter Two

the emergence of collectively negotiated, respectful and inclusive ethical conversations. As it is through such shared understandings that a more appropriate and inclusive moral response may be sought when navigating the ethical tensions inherent within the burgeoning practice of prenatal screening, a narrative research methodology is most fitting to this research as it provides an ontologically coherent and ethically inclusive means of hearing, appreciating and responding to the individual stories offered.

Why Narrative? ‘Our ultimate goal as social scientists is to learn about the substance, make theoretical claims through methods and learn about the general from the particular. Individual action and biography must be the starting point of analysis, not the end’ (Riessman, 1993, p.70).

Human beings are inherently storytellers, we interact with, and construct meaning from, the narratives we create around our lives every day (Bruner, 1991; Lindemann-Nelson, 2001; MacIntyre, 1984; Mishler, 1986; Taylor, 1989). We craft our own narratives and appear in others’ narratives, co-authoring the larger collective cultural narratives of which we are all a part (Bruner, 1991; Lindemann-Nelson, 2001; MacIntyre, 1984). It is through narrative, therefore, that we reveal our moral evaluations, create meaning in our lives and construct our own and others identities (Andrews, 2000; Bruner, 1986; Lindemann-Nelson, 2001; Taylor, 1989). Taylor (1989, p.47) further remarks that the ‘basic condition of making sense of ourselves is that we grasp our lives in narrative’, concluding that narrative represents an ‘inescapable structural requirement of human agency’ (ibid, p.52). The central importance of narrative and language in constructing and mediating the human condition is echoed by Mishler (1986) and further reinforced by Bruner (1991, p.5) who claims that narrative not only represents reality, but constitutes it as well. Indeed for Bruner ‘a life as lived is inseparable from a life as told … not “how it was”… but how it is interpreted and reinterpreted, told and retold’ (1987, p.31). Thus individual experience, our narrative accounts of such experience and the ethical significance of narrative in framing our being and becoming are inextricably linked. Indeed, narrative lies at the core of the ethical. Educationalist John Dewey (1938, cited by Clandinin and Connelly 2000, p.2), suggests that understanding is grounded in experience and prior learning, making the further observation that such experience and prior knowledge always have both a personal and a social dimension. The

An Ethical Orientation

25

ontological orientation underpinning Dewey’s claims significantly resonates with the phenomenological account embraced in this work which acknowledges that meaning is shaped by multiple interpretive frameworks. Thus Dewey (1938, cited by Clandinin and Connelly 2000) claims that people may not be fully understood as individuals alone, but rather must be considered in relation to their wider social frameworks. The deeply contextualised and communally situated nature of individual experience therefore necessarily creates a direct entry portal into understanding the overarching social, cultural and historical frameworks that shape the ethical dimensions of each individual’s experience. A narrative research method of inquiry based upon engaging participants in conversations about their individual experiences therefore provides an appropriate vehicle from which to consider the research questions posed in this work. As experience does not occur in a vacuum, each recounting of a person’s story is necessarily situated in the context of past experiences, prior knowledge, future imagined possibilities, in addition to individual and communal understandings that lie on the continuum of personal growth. It is this continuum that shapes individual ethical interpretations. As embedded and embodied discourses, the study of personal narratives gives access and insight into broader socio-cultural understandings (Clandinin & Connelly, 2000; Laverty, 2006; Thomas, 1999, p.78) bringing together ‘past, present and future meanings in an evaluative way’ (Bridle, 2004, p.135). Eliciting a personal narrative is therefore a potentially powerful investigative tool which facilitates the mining of the complexities and multiple layers of interconnectedness that define and guide individual and communal moral frameworks. As Gilligan notes (1996, p.253) ‘voice is the barometer of relationships because it connects the inner and the outer world’. Within a theoretical framework which actively acknowledges the symbiotic relationship between narrative and ethics, a narrative research methodology, as adopted in this work, is not approached as an interrogative process, but rather one which honours participants as having moral expertise in their own stories. By allowing participants to speak in their own words, determine the flow of topics explored, and emphasise or elaborate points of particular significance to them, the complexity and particularity of each account can be preserved to more accurately reflect their interpretations of their experiences (Strickland, 1994, cited by Bridle 2004, p.135). Thus narrative is both a product and a process of inquiry (Clandinin & Connelly, 2000), a technique that emphasises the stories

26

Chapter Two

people tell to account for, and make meaning from, events in their lives (Bryman, 2004). It is not the claim of this research therefore to ‘give voice’ to participants but rather, more cautiously, to hear, to listen and to forge an ethically informed response which is respectful of the many and varied contributory voices present. Using a narrative research methodology, this research sought to hear the perspectives of a number of key stakeholders in the practice of prenatal screening, seven mothers and ten health care practitioners whose daily work brought them to the junction between the personal and the professional as they navigated this shared moral terrain.

Chapter Summary There are many core differences between the various approaches to ethics. The dominantly accepted view on the one hand is a ‘top down’ approach, an external expert discourse concerned with intellectual mastery of the right principles and theories to be applied rationally and universally to guide behaviour towards a generalisable truth. Conversely, the other is a ‘bottom up’ approach, starting with the richly contextual, nuanced, embedded and embodied particularities of each individual, building the moral picture upwards and outwards from each unique situation. While the range of philosophical theories and practical approaches may enrich our ethics knowledge in different ways, as the ethical orientation of this work aims to produce research that is responsive, collaborative, inclusive, transformative and empowering, to promote ethics as generally accessible and practically useful in real situations at micro and macro ethical levels, the work more strongly resonates with the phenomenological view. In aligning this work with the phenomenological stance, it is important to note that the significance and value of reason and abstract thought is not rejected. However, the strong resonance between the relational focus and ontological coherency of the phenomenological account of the self with the ontological foundation of educational philosophy that will be described later in the work provides a strong platform for interpretation and analysis. If the moral goods we seek are shared through inter-subjective relationships with others, language must be acknowledged as significant in the actualisation of these goods. As no two people will seek exactly the same life of meaning, significant evaluations differ for each person. The most appropriate way to access each person’s unique moral frameworks is, therefore, through attending to their particular narrative, through inviting a

An Ethical Orientation

27

shared dialogue. Consequently, ‘narrative’ must lie at the heart of the ethical encounter. Attending to the ethical in health care therefore requires us to step outside the thin morals of obligatory action bound by abstract principles to understand the constitutive goods that frame collective and individual moral decision making (Taylor 1989).

CHAPTER THREE PRENATAL SCREENING: THE TECHNICAL LENS Introduction In order to orient the individual experiences of the participants considered in this study a brief description of the most prevalent prenatal tests commonly referred to by the participants follows, accompanied by a short background of the social contexts in which they have been developed and interpreted. A brief explanation of the strengths and weaknesses of each will also be given. The term ‘prenatal screening’ broadly applies to all technologies that attempt to determine the physical and health status of a foetus before birth. Commonly, it refers to technologies such as Nuchal Translucency Screening (NT), Ultrasound (U/S), blood tests including Maternal Serum Alpha Feto Protein (MSAFP) and Pregnancy Associated Plasma Protein (PAPP- A), Amniocentesis, Chorionic Villus Sampling (CVS), and Preimplantation Genetic Diagnosis (PGD). In this short discussion attention will be focused upon the four most prevalent screens encountered by the mothers and practitioners in this cohort, i.e. the blood tests MSAFP and PAPP-A, Ultrasound, Nuchal Translucency, and Amniocentesis.

Blood Tests – Maternal Serum Screening Commonly referred to as the ‘triple test’ or, more recently, ‘quadruple test’, maternal serum testing measures concentrations of three or four biochemical and hormonal levels in maternal serum (Egan and Borgida 2002; Wald, Huttly, and Hackshaw 2003). In conjunction with the increasing statistically determined risk of fetal anomalies associated with advanced maternal age, abnormal levels of these biochemical markers

30

Chapter Three

have been associated with neural tube defects, placental problems and some chromosomal or karyotypic irregularities (ibid). Although abnormal levels may indicate increased risk, they are not conclusive proof of the conditions mentioned above and further confirmatory testing, such as amniocentesis, is required to establish a definite diagnosis. A number of false positives of between 4% and 10 % are associated with maternal serum screening (Jaques et al. 2007; Press and Browner 1997; Harrison and Goldie 2006; West and Bramwell 2006). Due to its applicability to large populations and relatively low cost, maternal serum blood screening became widespread in the late 1990’s to early 2000’s and was regarded as a better predictor of risk than maternal age alone (Egan and Borgida 2002). In women under thirty five, who are by definition in a lower risk category, the use of maternal serum testing was credited with an increased detection of Down syndrome from 28.7% to 46.3%, (Carothers et al. 1999,p. 186 ) cementing its clinical relevance. However, more recently, the increasing frequency of nuchal translucency screening, in conjunction with the measure of the four blood biochemistry markers mentioned earlier is more accurate and has a lower false positive rate of around 1% (Spencer and Cowans 2007). Thus, the combined nuchal translucency and blood testing has largely superseded use of maternal serum screening alone.

Ultrasound From its first use in the detection of foetal anomalies in the 1960’s, ultrasound has become an increasingly routine and widely embraced tool in obstetrics practice (Oakley 1996) with around 90% of women in developed countries receiving at least one ultrasound during pregnancy (Levi 1998; Whynes 2002). It is a non-invasive, inexpensive, visual imaging technique. Ultrasound use became increasingly widespread in the 1980’s as a means of assessing obstetric risk (i.e. gestational age, placental position, twin pregnancy). However, it is now increasingly focused on foetal diagnoses with respect to the revelation of physical or structural anomalies (Getz and Kirkengen 2003). Generally regarded as a benign procedure because of its non-invasive nature, in Australia at least, ultrasound is commonly offered to all pregnant women irrespective of their risk status with The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) recommending all pregnant women be offered at least one ultrasound before 20 weeks. RANZCOG further advises that the proactive

Prenatal Screening: The Technical Lens

31

offer of more invasive screens for Down syndrome or other fetal aneuploidy be reserved for ‘high risk’ mothers only. As ultrasound is believed to carry little physical risk to the mother or baby it has been widely accepted by mothers who articulate their primary motivation in accepting it as ‘seeing the baby’ (Richie, Boynton, and Bradbury 2004; Erikson 2001; Rapp 2000; Whynes 2002). The motivation to accept ultrasound to ‘see the baby’ was reinforced by most women in this study, whose typical comments in articulating why they chose an ultrasound are mirrored in Anne’s explanation, I wanted to see the baby, of course, that was a very exciting thing for me. I was interested in whether it was a boy or a girl. With my first child I saw his face, and I was just … Well…(laughs) I fell in love with him then, he had the sweetest angel face I’d ever seen, and so I was very keen to see my others as well. Anne.

While most of the mothers saw no potential downside in agreeing to have an ultrasound, some practitioners interpreted this practice through a different, more cautious lens with one midwife commenting on this phenomenon wryly, I think they are wooed (by technology)…it’s the first photo of the baby…their photo albums begin now with a scan picture...quarter of the way through the book is the birth. Midwife 4.

In reflecting further on women’s motivations in accepting ultrasound screening, several practitioners made comments in line with those below: Women hope that they’re having that scan to find out if it’s a boy or a girl …and a lot of them find out. (I: Do you think there is a clash of motivation between practitioners and patients?) Well, yes I think so, because from a health professional’s point of view you don’t care whether it’s male or female…I think women go in blissfully ignorant… or at least not fully informed of what the possible outcomes are. Midwife 3.

And from an Obstetrician, I do think that the vast majority of people go into a pregnancy thinking everything is normal, that they come for an ultrasound with the view of getting a picture and being told the baby is normal and I don’t really think they honestly appreciate that what you (the practitioner) are really looking for is in fact abnormalities. Obstetrician.

32

Chapter Three

As a tool that is believed to be innocuous, which is readily accessible in the comfort of an obstetrician’s rooms, an increasing tendency to scan multiple times during a pregnancy has been noted in the literature (Bellieni et al. 2005; Marinac-Dabic 2002) a trend highlighted by Mary who explained, With my obstetrician he just did a scan on me every time I went to see him, to make sure that everything was OK, with the baby’s size and so on. (I: How many did you have with Ben?) With Ben…about 12 …a fair few…every time I saw the obstetrician I made him give me a scan…in hindsight I guess that was a bit over the top.

This pattern of escalating ultrasound use, typified by Mary’s experience, is beginning to raise concern amidst some practitioners in light of the growing body of evidence to suggest that the cumulative doses of radiation to which the developing foetus is exposed have not been adequately assessed and may indeed be collectively unhealthy or unsafe (Buckley 2005, pp. 99-102). While Buckley (ibid) cites a range of research implicating ultrasound as a causal factor in low birth weight, intrauterine growth retardation, left handedness in male infants and delayed speech development, these claims remain contested (Newnham et al. 2004). The relative caution advised in the systematic review conducted by Bricker et al (2000) however suggests that the debate on the safety of ultrasound on the developing foetus is not fully settled, as suggested in the following quote, ‘Existing evidence suggests that the use of routine Doppler ultrasound in low risk or unselected populations does not benefit either mother or baby, and may be harmful. At present, Doppler ultrasound examination should be reserved for use in high risk pregnancies’ (Bricker et al, 2000, p.152).

There appears to be growing unease amongst some practitioners about the excessive use of prenatal screening in general, and ultrasound in particular, with Bellini et al (2005, p.692) cautioning ‘we should never forget that it is inappropriate to perform so many scans in a low risk pregnancy’, and Marinac-Dabic (2002, p.S21) concluding, ‘Recent innovations in the use of Doppler flow studies, higher energy levels, smaller transducers with a more focused beam and longer times of exposure have created new areas of potential risk to the developing fetus… until long term effects can be evaluated across generations, caution should be exercised when using this modality during pregnancy’.

Prenatal Screening: The Technical Lens

33

The cautionary advice, to exercise restraint in the use of ultrasound, or reject medically unnecessary exposure to ultrasound like that quoted above, may not be universally accepted as Mary’s experience suggests.

Soft Markers Until the 1990’s only major structural abnormalities, such as anencephaly or gastroschisis1 were detectable on ultrasound (Getz and Kirkengen 2003). However, more recently, as imaging technology has improved, the enhanced visual clarity with which a foetus can be examined during ultrasound has resulted in the ability to pick up relatively minor and previously unseen physical ‘anomalies’ or features (Boyd, Chamberlain, and Hicks 1998). The detection of these more subtle structural changes have become of increasing interest because of their potential statistical association with certain chromosomal abnormalities (Getz and Kirkengen 2003). These subtle changes, termed ‘soft markers’, are defined as: ‘structural changes detected at ultrasound scan which may be transient and in themselves have little or no pathological significance, but are thought to be more commonly found in foetuses with congenital abnormalities, particularly karyotypic abnormalities’ (Bricker et al. 2000, p.29).

Examples of soft markers include echogenic heart, seen as white dots within the heart tissue indicating a structural abnormality, echogenic bowel, dilated renal pelvis, choroid plexus cysts (CPC’s)2 and shortening of the femur3 (Getz and Kirkengen 2003). In isolation, few of these individual markers raise concern, however, when several markers are

1 Anencephaly is a condition in which the upper part of the brain and its protective skull cap are missing and the lower part of the brain and the base of the skull are not properly formed. This condition is always fatal. (http://www.ninds.nih.gov/disorders/anencephaly/anencephaly.htm) Gastroschisis is an abdominal wall defect in which the anterior abdomen does not close properly allowing the intestines to protrude outside the foetus. (http://fetus.ucsfmedicalcenter.org/gastroschisis/) 2 A recent 2006 study concluded that ‘CPC’s detected by prenatal ultrasound do not pose or reveal a threat to fetal development’ (Di Pietro et al. 2006, p.622). 3 For a fuller explanation of various soft markers, a useful website maintained by National Health Service in the United Kingdom. (http://www.pi.nhs.uk/ultrasound/softmarkers/index_sm.htm.)

34

Chapter Three

present in a foetus, the statistical likelihood of a chromosomal anomaly increases and further invasive diagnostic testing is commonly recommended. While clinical use of ‘soft markers’ is commonplace (Snijders et al. 1998; Boyd, Chamberlain, and Hicks 1998; Getz and Kirkengen 2003; Spencer et al. 2003), their clinical relevance is complicated by their often transient appearance. In most cases where a soft marker is identified, a healthy, normal child is born (Getz and Kirkengen 2003; Boyd, Chamberlain, and Hicks 1998; Whittle 1997; Di Pietro et al. 2006). In a benchmark, six year longitudinal UK study that followed the outcomes of over 33 000 pregnancies, Boyd et al (1998) reported that 92% of foetuses identified as potentially abnormal due to the presence of ‘soft markers’ seen on ultrasound were later confirmed to be normal at birth. Boyd et al’s (1998) study further noted a 12-fold increase in false positives when relying on ‘soft markers’ alone with a corresponding increase in diagnosis of actual malformations of only 4% (ibid., p. 1579). Two instances of a normal foetus being aborted in response to a reported soft marker were confirmed, where the parents chose not to pursue the additional diagnostic testing advised (ibid). Even in this extensive study, only ‘55% of malformed foetuses and infants were correctly identified prenatally’ (ibid., p. 1578). With relatively high false positive rates, questionable predictive powers, and the potential to place healthy foetuses at risk by unnecessary exposure to the risk of miscarriage while undergoing amniocentesis or unwarranted termination, and the significant impact on anxiety levels of parents (Kowalcek et al. 2002; Watson et al. 2003), the reporting of ‘soft markers’, which by definition may be ‘transient and have little or no pathological significance’ (Bricker et al. 2000, p.29) remains controversial. It is understandable that practitioners feel it is ‘unrealistic and unethical not to report anomalies that may ‘leap to the eye’ (Fitzgerald 1999, p.805; Getz and Kirkengen 2003, p.2046), but the uncertain clinical relevance of soft markers makes their reporting fraught. The conviction that every anomaly must be disclosed, regardless of its predictive power or veracity, means that the separate clinical aims of determining gestational age, obstetric risk, revealing gross or subtle structural abnormalities in the foetus, and assessing the risk of chromosomal defects (associated with soft markers), are not selectively pursued in practice. The separate ethical considerations surrounding each aim, therefore, also become obscured as women who consent to scan to

Prenatal Screening: The Technical Lens

35

‘see the baby’ may be confronted with the unanticipated disclosure of screening information. Obtaining valid informed consent in this scenario is therefore compromised by the clash of motivation between practitioner and patient, coupled with the ill-defined and exploratory nature of such open ended screening which confounds disclosure and may limit discussion of potential findings prior to consent being given.

Nuchal Translucency An increasingly important soft marker is the measure of nuchal thickening or nuchal translucency. This is defined as the ‘maximum thickness of subcutaneous translucency between the skin and soft tissues overlying the cervical spine’ (Nicolaides et al. 1992, p.867). In combination with other risk factors determined from blood biochemistry and maternal age, the measurement of the nuchal fold is used to assign an overall, age-adjusted risk to each individual pregnancy. Nuchal measurements must be taken at a specific time in the pregnancy, and the results may be skewed by the gestational stage of the pregnancy. Nuchal translucency is now well established in antenatal care, and has been introduced largely under the unquestioned and entrenched rubric of the existing and widely accepted routine of the 18 week ultrasound, further blurring the exercising of choice as the separate clinical aims of this test may not be clearly differentiated by some women. Pilnick (2004, p.451) further notes that the choice to undergo nuchal screening is often presented in terms of ‘old versus new screening practice, rather than a straightforward choice between screening and not screening’, a mode of presentation that may portray an expectation of cooperation. One midwife interviewed expressed concern that nuchal translucency was referred to as ‘the 12 week scan’, a descriptor that normalised participation and obscured its intention and purpose, You’d certainly hope they (GP’s) would be giving the appropriate information that it was a screening test for genetic abnormalities, particularly Down syndrome, but that it was only a screening test and that there would be consequences if it turned up a higher risk…I don’t know that many women even knew that. To them it was just ‘the 12 week scan’. Midwife 3.

Commenting on mothers’ understandings of ‘the 12 week scan’, this midwife further observed,

36

Chapter Three Most people assume they will have a normal baby and for most people that 12 week scan is an opportunity to see their baby… are they taking the 12 week scan the same way (as the 18 week ultrasound) without really, really understanding…what we’re doing ? Midwife 3.

Even if the widely held position that there is no physical risk to mother or child from ultrasound is correct, there are a number of additional risks associated with the reporting of the false positives linked to soft markers and nuchal screening including: • Exposure of a normal foetus to the unnecessary risk of amniocentesis which is reported to carry a procedural miscarriage rate of 1:200 (Egan and Borgida 2002; Alfirevic 2003; Boyd, Chamberlain, and Hicks 1998). Although more recent analysis of miscarriage rates associated with amniocentesis suggest a significantly lower miscarriage rate of 0.06% (Eddleman et al. 2006), the individual clinical skill of the practitioner has already been established as a significant variable determining miscarriage from this procedure (Herman et al. 1999; Kornman et al. 1996). It seems likely, therefore, that the invasive nature of amniocentesis is accompanied by some increased risk of miscarriage to the pregnancy, even if this risk is small. • Psychological harm to the mother resulting from ‘considerable short term anxiety’ and distress of a false positive result (Watson et al. 2003, p. 569; Zamerowski 1999). A significant body of research exists noting the presence of anxiety or depressive reactions, in mothers undergoing prenatal screening which are not necessarily related to the invasiveness of screening, the gestation of the pregnancy, or to the outcome of the test. • Finally, the risk of terminating a normal foetus based on the presence of a soft marker which, contrary to medical advice, is not confirmed by further testing as reported by Boyd et al (1998). While ultrasound is a powerful diagnostic tool for particular physical anomalies, it is not a diagnostic tool for genetic or chromosomal conditions. Within the cohort of this study, the distinction between the clear diagnostic result from amniocentesis and the preliminary and unverified nature of ultrasound with accompanying blood biochemistry screening procedures was not well understood by mothers. Several practitioners expressed deep unease that this fundamental differentiation

Prenatal Screening: The Technical Lens

37

between screening and diagnosing seemed so poorly grasped and difficult to communicate as evidenced in the following comments. I would certainly say that a lot of people who have a nuchal translucency do not probably understand, particularly the younger women. I think women over 35 do understand it’s a screening test for Down syndrome, and a lot of them do ask for it, because they don’t want to have the other test but I don’t know that a lot of them really understand the difference between screening tests versus a diagnostic test. Obstetrician The word ‘screening’ they really don’t understand that…so when I break that down and explain that we can’t say yes or no, they are surprised…so… it never surprises me that some of the words that we take for granted in everyday use, are words that we think people will understand, but they don’t really understand what that truly means. Genetic Counsellor 1

Regardless of existing understanding about the certainty or veracity of the tests undertaken or the results given, the revelation of ultrasound markers that may be statistically linked to chromosomal anomalies inevitably leads to the offer to undergo further, more invasive diagnostic testing such as amniocentesis to secure a definitive result, if only for a limited number of conditions.

Amniocentesis On receiving a ‘high risk’ categorisation from nuchal translucency, blood serum screen or ultrasound, the next step for women who want definitive diagnosis of certain conditions (though not all) is to have an invasive amniocentesis during which some amniotic fluid, which contains foetal cells, is removed from the amniotic sac surrounding the foetus. Foetal cells are cultured and may be karyotyped to reveal particular chromosomal abnormalities, most commonly trisomies 13, 18, 21 or other aneuploidies including Turner’s syndrome, Klinefelter’s Syndrome, Edwards Syndrome or Patau Syndrome for example. Routine amniocentesis does not look for specific genes or genetic disorders, although if there is reason to suspect a particular familial genetic disorder such as Cystic Fibrosis, Huntington’s Disease or Duchene’s Muscular Dystrophy for example, more specialised testing may be undertaken. In a routine amniocentesis, the overall structure and shape of the chromosomes may flag markers of other less common genetic conditions. Importantly, however, normal chromosomal shape and structure at the macro level does

38

Chapter Three

not guarantee the absence of a genetic disorder at the micro level of nucleotide sequencing of individual genes. Since its first introduction in the 1970’s, the list of conditions that may be diagnosed via amniocentesis has grown, although it is by no means comprehensive. While the most common genetic anomalies are looked for, numerous more rare conditions remain undetected. Thus, while amniocentesis gives a definitive diagnosis for the limited number of specific conditions analysed, the list of potential conditions unable to be prenatally diagnosed remains vast. As this procedure is usually performed at 16-17 weeks, and comprehensive results may take several weeks to complete, a limited time window exists between diagnosis and possible termination before the medically desired gestational limit of termination at 20 weeks. In recent years, in an attempt to confirm earlier diagnoses, amniocentesis has been performed at 9 to 14 weeks; however, an increased miscarriage rate of up to 1:20 or 5% (Alfirevic 2003) has been reported. The application of amniocentesis later in the pregnancy, resulting in later terminations, is considered to be a detraction as earlier diagnosis and termination is believed to be less confronting or affronting to parents, a view echoed by one GP, It’s appropriate (to discuss termination) when you review them at about 10 weeks because at 10 weeks you’re in a position where a termination is of less a medical or surgical insult than perhaps at 16 weeks. General Practitioner 1.

The view that early termination is less likely to create psychological harm, however, is not unanimously supported in the literature. Neugebauer et al (1997) noted that depression following termination ‘did not vary significantly by history of prior reproductive loss or by maternal age, nor did risk vary by time of gestation or attitude toward the pregnancy’. suggesting that while gestational stage of the pregnancy is a factor, it is not necessarily the dominant causal factor when pregnancy loss results in feelings of emotional trauma (Neugebauer et al. 1997, p.383). An emerging issue that has not been widely researched to date is the psychological distress experienced in the growing time gap between identifying a potential problem by nuchal translucency at 11-12 weeks gestation and the potentially five to six week wait before amniocentesis can be performed effectively at 17-18 weeks gestation. This situation was experienced by Mary, one of the mothers who participated in this study.

Prenatal Screening: The Technical Lens

39

Describing the almost 6 week gap between her Nuchal scan at 12 weeks and receiving the amniocentesis results at almost 20 weeks, she said, (The waiting was) harrowing...that would be the best way to describe it…I was a basket case…I didn’t know what to do…who to talk to ... It had only just been developed, it was only just out there…and there was really noone to talk to. My obstetrician seemed to think that there was going to be no problems based on the scans, whereas the ultrasound specialist said because of the blood work this is what is going to happen…I had the amnio the week before Christmas, and they said they should have enough cells and could have the results in three days…Christmas Eve we get a phone call. “Well we’ve got some results for you, but you’ll have to wait a week before we get the rest” because they didn’t have enough cells. So we got the first lot of results on Christmas Eve, and the next lot on New Years Eve, we got the all clear that baby was fine…so instead of taking three days it took nearly three weeks for us to get results…which was just a nightmare. Mmmm…almost 8 weeks of not knowing…trauma really… I was actually prescribed sleeping tablets…and then he was perfect, absolutely nothing wrong with him…yes. (I: How did you feel when you were finally told that everything was OK, the test results were fine?) I just felt like screaming…at everyone...just for the whole…I was really glad that everything was OK…but I didn’t like the way it was done…if that makes sense…being sat down and being told, OK…your baby‘s probably going to have Downs, and probably won’t survive…Your baby has a 1:32 chance of making it to full term …And it’s just not something you like to be told…And then to be told ‘we can find out, but you have to wait another 4-5 weeks before we can do that’. Mary

While the informing and consenting protocols surrounding these tests have tended to focus primarily on the physical risks, the risk of psychological harm is keenly felt by women and potentially extremely damaging. Paradoxically, the clinical improvement of the earlier 11 week nuchal scan may in fact be intensifying the possible psychological harms by lengthening the time gap between raising the initial alarm and performing the diagnostic amniocentesis, optimally at around 17 weeks gestation. Psychological harm from prenatal screening is well documented, yet appears to be rarely factored into clinical assessment of the efficacy of screening, or cost benefit analyses. In spite of the concerns raised above, it is true that all the women interviewed in this study gave their consent to and accepted a number of

40

Chapter Three

screening tests on offer. However, the stories that emerged from all the participants in this study highlighted a number of factors that exposed common misunderstandings, in terms of the philosophical, personal, social, and institutional constraints that undermined informed consent in practice. The following 4 chapters will explore each of these in more detail.

CHAPTER FOUR CONSENT AND CHOICE IN PRENATAL SCREENING: PHILOSOPHICAL CONSTRAINTS

Introduction The desire that a person should act voluntarily from a position of knowledge and understanding, to give their voluntary ‘informed consent’ to any medical intervention, and be supported in their capacity to exercise free will without coercion, is widely valued in Western society (Manson & O’Neil, 2007). Since its inception with respect to research participants outlined in the Nuremberg Code in 1947, reinforced in subsequent versions of the Declaration of Helsinki, the specific requirement that practitioners seek patient consent has extended to clinical care. Over the past four decades seeking consent from patients prior to medical treatment has become ingrained in health care practice (Beauchamp and Childress 2001). Regarded as preserving individual patient autonomy, reliance on informed consent as a means of ensuring ethical probity in clinical practice has consequently become ‘so well entrenched that (it’s) presence, indeed (it’s) necessity, and justification are rarely questioned’ (Manson & O’Neil, 2007, p.2). Yet despite the obvious value placed on informed consent, current approaches to actualising it in practice, which significantly focus on attaining the minimal legal requirement of information disclosure, are significantly failing to achieve the ethical ideals of intentional, voluntary and understood (by patients) intervention. A growing body of literature confirms that low levels of informed consent persist across a range of medical practices, including prenatal screening (Bottrell, Alpert, Fischbach, & Emanuel, 2000; Braddock, 2002; Braddock et al., 1999; Wear, 1998).

42

Chapter Four

In a health care climate where practitioners and patients commonly claim to value and aspire to meet the ethical standard of understood, or informed consent, the widespread failures observed suggest some fundamental and underlying flaws. Research further suggests that patients for the most part desire fuller understanding of their medical care (Leithner et al, 2006) and practitioners for the most part are not wilfully withholding such information. Therefore, exploring the contextual and theoretical foundations and presumptions that underpin the ethical requirements of informed consent may provide some insight and explanations for the weaknesses observed, and thus better equip patients and practitioners in achieving the ethical outcomes sought. This chapter will consider the philosophical origins of the elevation of autonomy and its subsequent linking to informed consent in medical care. The experiences of the participants in this study will be considered in relation to the broader medical and philosophical discussion of autonomy and informed consent.

The Autonomous Self The word autonomy is derived from the Greek words ‘autos’, meaning ‘self’ and ‘nomos’, meaning ‘governance’ or ‘rule’, and is understood in the medical context as describing the capacity for self governance, for making individual choices, and for exercising free will/choice. A further inherent characteristic of autonomy is that the self governance it denotes is understood to be free from the control and interference of others. Beauchamp and Childress (2001, p.58) propose that there are two essential conditions of autonomy being (1) liberty or freedom from control, and (2) agency, which they describe as the capacity for intentional action. Respecting a person’s autonomy thus requires not only the acceptance that they are entitled to make choices based on personal values and beliefs, but extends, in some instances, to the actions of enabling and supporting such autonomous choice even if it seems at odds with conventional rationality (Beauchamp and Childress 2001, p.63). Most writers begin their exploration of the concept of autonomy with the work of Immanuel Kant who argued that respect for autonomy flows from ‘the recognition that all persons have unconditional worth and the capacity to determine their own moral destiny’ (Beauchamp and Childress, 2001, p.64; Manson & O’Neil, 2007, p.17; Faden and Beauchamp, 1994). However, Kant’s initial account of ‘autonomy of the will’ is not the commonly accepted account of liberty, agency based on understanding,

Consent and Choice: Philosophical Constraints

43

that permeates bioethical discussions today (Beauchamp and Childress 2001, p.351). Rather Kant regarded autonomy as the capacity to act rationally, within the requirements of the universally applicable categorical imperative (ibid). Our collective expectations of autonomy have evolved and more contemporary incarnations commonly present autonomy primarily as individual independence. It is on these more individualistic understandings that the currently prevalent informed consent procedures are premised. Manson and O’Neil (2007, p.18-19) explain, ‘It is easy to see why those who see autonomy as a matter of individual independence link it so closely to informed consent: informed consent procedures protect individual choice, and with it individual independence, hence individual autonomy. So if we can show that individual autonomy is a fundamental value – better still the fundamental value – and that it can best be protected and implemented by informed consent requirements, it may prove possible to justify informed consent procedures as required if we are to respect autonomy.

Thus, debate rages over whether autonomy is a matter of ‘mere sheer choice’ (Manson & O’Neil, 2007, p.19), or whether autonomy is a matter of choice within the confines of rationality and culturally acceptable parameters with respect for others. Clearly, these conceptions each have flaws, the sheer choice position demands that all choices regardless of their potential for self-harm, other harm or dehumanisation be supported, and individual choice based on reason and rational thought begs the question of whose conception of rationality is privileged ( Macintyre, 1984). Thus Manson and O’Neil (2007, p.22) conclude that ‘all of this suggests that appeals to individual autonomy, however conceived, are unlikely to provide convincing justifications for informed consent procedures’. The belief that informed consent protocols formalise respect for autonomy seems firmly embedded in a social and cultural sense. From a theoretical perspective, the detached autonomous, individualistic ‘I’, who will rationally consider their accessible options and give an unencumbered and reasoned response to the question ‘what ought I do’, is largely a product of the ontologically flawed modernist conceptions of the self as discussed earlier. While this concept of the ‘autonomous self’ has arguably colonised orthodox bioethical discourse, as Isaacs (2007, p.3) noted earlier, ‘this self is not a human self’, it does not reflect the lived

44

Chapter Four

reality of human ‘being’ or enhance understandings of how deeply embedded decisions are interpreted and made. People do not ignore personal sentiments in moral reasoning, nor are they detached from sentimental consequences (Sherwin 1992). They are intentionally partial to family and friends and have mutual obligations of care, responsibility, trust and affection. Hence, while an individual may consider themselves to be rational and independent, they are unquestionably and primarily embedded and embodied beings with particular roles and responsibilities that may present non-negotiable constraints on their ability to act in a purely individualistic or rationally considered way. Although these alternative ways of being are often represented as competitive or mutually exclusive, as noted earlier (Friedman, 1997, p.45), autonomy has many coexisting facets. Social relationships, contexts and practices are not separate from autonomy or individuality. Rather, social context and interdependence are an integral part of realising self governance. Autonomy and objectivity therefore need not be positioned competitively against relationality and subjectivity as mutually exclusive positions. Other assumptions embedded within biomedical applications of the principle of autonomy are: a) That the person making the decision, and not the community to which they belong, are the final arbiter of the integrity of the decision made. b) That real access to a variety of options actually exists, and can be readily accessed. c) That relationships with others are supportive, both psychologically and socially, and there is no consequence of abandonment or retaliation if a choice is made that others, upon whom the person may depend, oppose. In response to the first point, women may fulfil many roles within a community such as mother, partner, or responsible citizen to name a few, and thus have competing responsibilities (Bridle 2002; Lippman 1999). The best outcome as a mother may be in direct conflict with the best outcome perceived by society at large. For example, the birth of a child with a disability may be rationally and objectively viewed as an unwanted burden or financial drain on society that should be resisted by a responsible citizen, or conversely, subjectively viewed as an event that elicits great compassion, joy, support and love within the child’s family.

Consent and Choice: Philosophical Constraints

45

These two positions are irreconcilable, yet in deciding whether to embark on prenatal screening, women must balance these opposing concerns. Access to and awareness of the range of available options is another source of contention, with the routine incorporation of screening obscuring the voluntary nature of participation. Many women interviewed in previous studies did not understand that refusal to screen was an option, resulting in a clinical norm where it was harder to opt out than in. Women who sought the alternative of non- participation reported feeling labelled as ‘difficult’ or ‘unco-operative’ (Press and Browner 1997; Williams, Alderson, and Farsides 2002; Santhalahti et al. 1998; Press and Browner 1993). The expectation of participation inherent within ‘routine’ practices threatens to erode the validity of any consent given and calls into question the notion of ‘choice’, when no workable alternative is offered (Lippman 1999). Deference to the language of individual choice may ring hollow when alternative pathways are not explicitly offered. Indeed, under these circumstances ‘choice’ can become quiet acquiescence to the least appealing of several unappealing options. Narrowly defined and reductionist views of autonomy may further exclude the broader contextual factors of moral decision making by firmly focussing attention on aiding the physician ‘getting’ consent (Manson 2007, p.301). Consequently, the bioethical discourse that informs the development of institutional practice and policy, and which directs and dominates debate, become practical questions concerning the quantity of information that is required to be disclosed (Manson & O’Neil, 2007, pp.28-49). The patient, while being the subject of consent, the person giving the waiver, is often conspicuously absent from these deliberations. Dodds (2002, p.213) explains, ‘the narrow focus on consent as the sole locus of autonomy considerations in medicine has worked to constrain debate about autonomy in health care…Identifying autonomy with informed consent in health care makes it easy to overlook other limitations…dentifying respect for autonomy with informed consent presupposes that ethical concern should be directed to the actions of the physician in obtaining consent (whether the physician gives full and adequate information, whether the physician has unduly influenced the decision of the patient, whether the physician explains the information clearly, etc) and not to the decision making process of the patient . Finally the focus on informed consent ignores the ways in which health care practices influence the development and demise of the capacity for personal autonomy’.

46

Chapter Four

Autonomy, when understood as rationally considered, unencumbered, and individual choice thus provides too shallow an account of selfhood to form a secure basis of meaningful ethical deliberation in health care as it fails to specifically acknowledge the consequence of individual actions on others, or the deeply relational and embedded nature of decision making. Thus Manson and O’Neil (2007, p.19) conclude, ‘Individual autonomy cannot be the sole principle of medical or research ethics, and consent requirements that protect individual autonomy cannot be the sole criterion of ethically acceptable action.’

Autonomous Voices The embedded and relationally defined nature of human being with its accompanying plurality of goods necessarily creates conflicting desires. As Charles Taylor noted earlier, the difficulty in negotiating the ethical is often not in discerning good from bad, but more challengingly, discerning goods from competing, mutually exclusive goods (Taylor, 1989). As the ethical framework outlined earlier suggests, people do not generally act purely out of individualistic ‘self’ interest, but are deeply motivated by their competing desire to preserve relationships of value. The reality of negotiating conflicting desires, of subjugating the self to protect valued relationships emerged frequently through the stories of participants. In terms of practical decision making, the question of ‘what ought “I” do’, as presented to independent autonomous women, was inevitably enmeshed in the opinions and expectations of significant others, taking into consideration what they thought ought be done. For example, Mary, who at 29 years old and pregnant with her second child was given a 1:32 risk of having a child with a chromosomal anomaly from a nuchal translucency scan, explained her thoughts about what her choices really were given her conflicting views on termination from those of her partner. She said, I thought about it (termination) every day…every single day…I just thought this is …I didn’t know what to do. In myself I knew there was nothing wrong, and then I had to look at ‘well what if there is’? What do I do then? In my mind it didn’t worry me whether the baby had something wrong…but then I had to look at the whole family side of things as well…How we would all deal with that so it was horrible…horrible. Mary

Later Mary returned to this conflict,

Consent and Choice: Philosophical Constraints

47

I had decided that I didn’t care whether there was something wrong... I couldn’t terminate…My other half said…well we need to weigh up the options and depending on what was wrong… he said it’s not fair to the rest of us but…we had completely different views and hadn’t really looked at the outcome because that would mean there would be something wrong and we didn’t want to do that. I know I didn’t…And he said, you have to consider this…and I said, ‘I’m not…I’m not giving up hope’, it was very hard…a very, very hard time…but yeah…I wasn’t for terminating and he was…but he said, ‘Well I don’t want to think about that, I know my baby is fine’…he was a rock, and I was a mess, an absolute basket case…but yes …we were at completely different ends of that . Mary

Mary’s experience illustrates the stark realities of relationally constrained agency that limited her preferred option. She had been placed in a position where she may have been called upon to reconcile the irreconcilable, in which she ‘couldn’t’ terminate, but in which her partner had expressed the opinion that keeping any child with a disability was ‘not fair to the rest of us’. The choice of Mary’s words in expressing the grave moral distress she was experiencing demand comment. She described her partner as rational and calm, ‘a rock’, while she identified herself as ‘a mess, an absolute basket case’. The source of Mary’s intense moral distress was the looming inability to reconcile the two competing goods before her, her strong personal commitment to the planned and wanted baby growing inside her, and the equal commitment to preserving harmony and stability in her relationship with her equally loved lifepartner, coupled with his expectations of her obligations to him and to their existing child. Similarly, Danielle touched on the relational nature of decision making, through constant use of collective rather than individualistic language such as ‘us’, ‘our’ and ‘we’ when she explained, We were facing the completely hideous decision of aborting this baby or even worse…or having a baby with Down syndrome and looking at the ramifications for that child and for our existing children…for the rest of our lives. Danielle

Each of the mothers explained their decision-making process within the context of a significant relationship with their partner and other children, illuminating the deeply embedded nature of their decision making capacity, reinforcing Taylor’s (1989) earlier point that our moral lives and ethical decision making are not shaped by one ‘good’, but rather

48

Chapter Four

a plurality of competing goods that must be carefully negotiated, balanced and fused. Preserving individual autonomy in the context of sustaining important relationships is thus necessarily more complex than the simple exercising of choice suggests as in a practical sense, realising one’s own autonomy is profoundly influenced, constrained, or supported by the world of others in which we are situated. Practitioners, too, struggled with the reality that seemingly competent and independent women were often impeded, or unwilling, to follow their clearly expressed intentions, but appeared deeply and blatantly constrained to act in their own best interests by the wishes of their partners. In discussing a recent case of a couple who opted to terminate their child, prenatally diagnosed with a cleft palette, Midwife 2 remarked, They were diagnosed, and they had counselling, and they had genetic counselling, they were shown pictures of before and after surgery...all sorts of things, but…it was a cultural problem as well as the baby having an anomaly…it was just ludicrous really…and the husband was the main problem…the husband was the one that did not (emphasis) want an abnormal baby. So convincing him that this was just looks, nothing else … which could be easily repaired…just wasn’t good enough for him, and the poor woman was just distraught about everything. It would be a frightful position to be in…do you lose your baby on the grounds that your husband doesn’t like the idea of it? Midwife 2

In discussing pregnancy termination, Mackenzie (1995, p.42) offers some insightful observations about the relationally constructed deliberations that inform decision making: ‘The decision process focuses on questions of whether you are in a position to care for it, both now when it is in the foetal stage and more importantly when it is an independent being; how and whether it can be integrated into your life and the lives of other, for example other children, whose lives will also be significantly affected by your decision; whether you feel yourself able or prepared to provide the physical and emotional care and nurturance needed in order for both the foetus and the child to flourish. What emerges from these discussions is that the assumption of moral responsibility in pregnancy cannot be constructed just in terms of responsibility towards the foetus, but has wider focus on the self, on relations with significant others, and on a person’s other commitments and projects’.

Just as the decision to terminate cannot be constructed solely in terms of responsibility to the foetus, similarly, it cannot be constructed solely in

Consent and Choice: Philosophical Constraints

49

terms of responsibility to one’s own personal individual desires. Arguably, when the child in question has been a planned and wanted child who now carries an unplanned and unwanted disability, the stakes for many become raised (Asch and Wasserman 2005). Detached, rational, and atomistic views of autonomy seem flawed as a framework of meaningful decisionmaking in this context as they dismiss the fundamentally relational nature of ethical decision making and the fact that each autonomous act has repercussions beyond the immediate decision maker.

Informed Consent and Choice As previously suggested, ‘informed consent’, through respecting patient autonomy, is generally regarded as essential for good quality, ethically robust health care and is regarded as a successful means of protecting patients from coercion, deception, the withholding of relevant information, and the problematic paternalism of past decades. When levels of patient understanding are high, greater acceptance of both positive and negative outcomes in care have been noted, an outcome which is beneficial for practitioners and patients alike (Grover 2003; Marteau and Dormandy 2001; Braddock 2002). Despite the obvious problems with modern conceptions of autonomy, informed consent given freely and based on full and accurate information and understanding is nonetheless desirable. As a principle that can be turned into an administrative process, autonomy has become, in the words of Canadian sociologist Arthur Frank, ‘bioethics biggest hit’ (Frank 2005). Institutionally, deference to patient autonomy and informed consent as defined by, and driven from within, the medical and legal communities have come to serve a multitude of administrative and legal purposes. According to Manson (2007, p.301), these purposes include: •

•

Demonstrating ‘proof’ of ethical practice, as patient ‘ rights’ have been incorporated into verifiable administrative processes. In some interventions, for example, there is an administrative requirement that consent forms are signed, thus ethical legitimisation is conferred to existing medical practices. Providing a defensive legal document lending protection to medical practitioners against potential legal recourse.

50

Chapter Four

•

Distancing medical care from the widely criticised paternalistic practices of the past by positioning the decisional capacity as resting solely with the patient.

While the institutional objectives and benefits of being seen to promote patient choice seem relatively clear, realisation of the claimed benefits for women, such as increased control over reproductive decisions and access to more choices in care, remain unrealised for many. For many women and their partners, ‘choice’ inevitably equates to the expedient acceptance of the most common route, a pathway that is clearly paved for them long before they realize they are on it (Lippman 1999). While the terms ‘choice’, ‘consent’, ‘informed consent’ and ‘autonomy’ are liberally scattered through the medical and bioethics discourse with respect to pregnancy care, in reality, a person’s ability to exercise such choice is restricted by multiple social, institutional, and personal constraints. Embedded in time, culture, history, relationships and prior understandings, each individual’s perception is significantly coloured by the unique layering of these interpretive filters. Many ‘choices’ are made under non– negotiable constraints, and are situated in entrenched institutional cultures and practices of which the person themselves may not even be aware. The question of choice may be more accurately framed as ‘choices made available’. The danger that arises in adhering to narrowly defined concepts of agency and choice with their limited orientation is that an overall ethical legitimisation of the established health care routines has occurred while deeper concerns about inherent injustices and failures within existing and unquestioned institutional structures have remained largely unchallenged (Sherwin 1992, 2001). Despite a wide body of social research flagging patient vulnerability and unequal power dynamics as factors which heavily compromise autonomy and weaken the capacity to freely exercise agency (Jecker, Jonsen, and Pearlman 1997, p115; Sherwin 2001; Donchin 2001), individual participation is persistently presented as evidence of ethically sensitive care. As any intervention is taken as fully consensual, the belief prevails that ‘no injury can be done where the subject is willing’ (Manson & O’Neil, 2007, p.3). However, as previously suggested, participation or willingness alone does not automatically demonstrate that such participation is informed, nor does participation, informed or otherwise, automatically ensure ethical acceptability, even if it meets the minimal legal standards of disclosure.

Consent and Choice: Philosophical Constraints

51

Local experiences of informed consent protocols and their outcomes as experienced and articulated by members of this cohort significantly mirrored the patterns observed outside Australia in which women’s actual experiences and knowledge suggested ill-informed compliance (Santhalahti et al. 1998; Stapleton, Kirkham, and Thomas 2002; Press and Browner 1997; Markens, Browner, and Press 1999; Williams, Alderson, and Farsides 2002; Bernhardt et al. 1998; Harris, Connor et al. 2004; Santhalahti 1999; Kohut 2002). The stories related by participants similarly highlight the documented practical struggles in achieving the seemingly elusive goal of informed consent. Only one of the seven mothers interviewed, Elizabeth, expressed a firm understanding of the tests on offer and a clear awareness that testing was optional rather than obligatory. Additionally, she could confidently articulate each test’s potential outcome and accuracy and communicate the personal and moral meaning of testing as she interpreted it in her life. Openly assessing themselves as ill-informed, five of the remaining six mothers actively described themselves as poorly educated, admitting weak understandings of which conditions were to be screened for, showing confused interpretations of what ‘risk’ ratios actually meant, displaying inadequate comprehension of the limited nature of the reassurance sought, and possessing poor knowledge of the proposed treatments that may be offered. The exception to this observation was the common awareness that termination would be offered as the ‘next step’ in the event of an anomaly being found. While the seventh mother, Leanne, actively pursued all available screening, describing herself as educated and well-informed, many of her explanations throughout the interview revealed confusion and misunderstandings of the details of the testing undertaken. Although Leanne’s commitment to have all available screening may have made the finer details of any interventions superfluous as she had resolved to accept all forms of screening regardless, active participation without adequate understanding may still demonstrate a lack of informed consent (Dormandy et al. 2002; Marteau and Dormandy 2001; Marteau, Dormandy, and Michie 2001). Potential harms arising from a false sense of reassurance in response to an amniocentesis that offers secure, but limited, knowledge also warrants mention. The negative psychological impact experienced by women who have misunderstood the limited nature of reassurance from amniocentesis and subsequently given birth to a child with a disability has been found to be more severe and long lasting than for women who have had no testing, but also birth a child with a disability

52

Chapter Four

(Watson et al. 2003). Thus, limited understanding may exacerbate the harms experienced even although the screening was intentionally sought. The following comments offered by the mothers in this study captured the range of experiences. There was no reason given as to why the scanning ultrasound was done. I wanted to see the baby, of course, that was a very exciting thing for me. I was interested in whether it was a boy or a girl. With my first child I saw his face, and I was just … Well…(laughs) I fell in love with him then, he had the sweetest angel face I’d ever seen, and so I was very keen to see my others as well. It only occurred to me as I was undergoing the ultrasound that they were making measurements of different parts of the child’s anatomy and physique and then I realised, I was thinking, well why are they doing this? I never talked to the radiologist, this is just me thinking, I thought they must be looking for things that were unusual or not right and only then it occurred to me that they were looking for abnormalities. Anne

Penny, a registered nurse expecting her first child, described her nuchal scan as such: I think it really wasn’t presented as a ‘choice’, it’s just this is what you do… And being my first pregnancy, I just thought well this is what you do…like every one has this scan and then another one and that’s the process in the medical world…Penny (I: Did anyone discuss with you what the purpose of the scan was and what the potential outcomes may be?) No…they didn’t…we were sitting there with the brochure, so I guess they would have assumed we would know something…but no actual discussion about what they were going to do, what they were looking for…through the ultrasound they would say stuff like, ‘we’re looking at the heart, or we’re looking at the brain’ and because I’m a nurse I would say, what are you measuring, and ask more medical oriented questions…which is when they mentioned the skin fold that would show Down syndrome or the heart that would also show Down syndrome. I knew they would obviously check the brain to see if there was one ... (laughs)…that the heart is functioning... I would say we were moderately informed…yes… they’re looking for abnormalities…but should they actually find any then we were not informed about the process of what would happen next. Penny

Danielle, Mary and Terri relayed a typical tale in which their practitioner screened first and explained later. Danielle explained,

Consent and Choice: Philosophical Constraints

53

Basically it was just, go and do it and well talk about it later… Danielle

A similar experience was recounted by Mary, It’s so…this is how it is...there’s the referral…off you go…no questions…no ifs/buts/maybe...I got no information about it the first time …I just went.

On assessing whether she gave informed consent, Terri reflected, Well, I thought I did but it was only later when they came out with all these other things that I felt that there had been a communication breakdown. I thought I did at the time, but as I say in retrospect, I thought I was informed but I obviously wasn’t as informed as I should have been. I certainly wasn’t informed as to what the result would be and the fact that I would have to make choices after that based on what those tests came up with. Pregnancy, well it’s a vulnerable time, and this pregnancy was vulnerable for me, I’m sure there are lots of women in the same boat… We really need to tread more lightly ... I did ask questions and they were answered very directly, maybe I just didn’t ask the right questions? I certainly mustn’t have with regards to the tests that I had. Terri.

While Leanne was committed to screening from the outset, her explanation illustrates another aspect of informed consent, which occurs when patients demand interventions that are not medically indicated, but are psychologically valued and desired. Leanne explained how she broached the subject of screening with her obstetrician. In the first 10 minutes of my 9 week visit to the obstetrician I told her I would have it done. And she was like …she wasn’t going to put me off because she could see I was quite strong about it. There and then I told her (the obstetrician) in the first 10 minutes that I wanted to have an amniocentesis because my colleague at work has a Down syndrome child. …The obstetrician wasn’t necessarily keen for me to have it done… she didn’t say in so many words… but she was a very open-minded lady, but she could see that I wanted it so she accommodated me, we organised it and I said ‘thank you very much’. Leanne

Finally, Elizabeth was the only one of the mothers interviewed who had proactively and independently educated herself to a high degree about the nature, efficacy, and risks of the procedures on offer, and had actively decided, prior to having the first ultrasound, that she would not pursue

54

Chapter Four

further testing if indicated. In answer to the question, ‘did you feel well informed?’ Elizabeth replied, Definitely. Definitely, it was mostly through self-education, but I don’t know whether if I hadn’t had that information they would have volunteered it. The bulk of our support and education came from outside the medical profession; maybe it’s my nature to research whatever I don’t know. We just wanted to find out what we needed to know. The conversation with doctors / midwives was more just clarification. Elizabeth

Collectively, the accounts offered by this cohort of mothers parallel observations made outside of Australia previously outlined. If informed consent is defined by adequate information disclosure, voluntary participation, and understanding of the nature, risks, and implications of the proposed intervention, the comments offered above suggest that informed consent was not established for six of the seven mothers in this cohort. From the practitioners’ perspective, the need to support ethically informed consent in their patients was acknowledged as important; however, their comments frequently gravitated towards descriptions of the numerous barriers to attaining the idealised benchmarks set. While only one practitioner felt that women she saw were generally well informed, more commonly, practitioners’ comments illustrated the tensions of negotiating the fluid and complex ethical terrain they traversed with their patients. These confounding factors included the realisation that informing was a collaborative venture requiring active patient input, not simply a one-way delivering of information. Additionally, practitioners acknowledged that the quantity and type of information revealed could not be a standardised script, but required them to listen, refine and revise depending on the individual needs and learning capacity of the particular patient. Issues of practitioner knowledge and preparedness to facilitate the required knowledge sharing with patients were further recognised as a potentially significant barrier to developing patient understanding. The critical time pressures experienced in clinical care were mentioned as a factor that could lead to expediency in fulfilling the administrative requirements of consent protocols, while possibly jeopardising due attention to the moral intentions of the consenting process. Awareness of the legal aspect of consent significantly permeated practitioners’ accounts, with one midwife wearily remarking,

Consent and Choice: Philosophical Constraints

55

I guess we’re at a stage with informed consent where you just have to do your best and write it down. Midwife 3

In assessing the levels of informedness in their patients, the following comments highlighting the rarity of achieving informed consent in practice were offered by practitioners. I think informed consent is intriguing and I don’t know that you could honestly ever say that there is true informed consent, because I still think in the end people hear what they want to hear and listen to what they want to listen to and I think we modify our consent discussions to include what we perceive the patient will understand…that’s certainly one of the issues, you tell the patient what you think they can understand, so you probably will tell an educated patient more than a lower educated patient. Obstetrician I think we get so busy and carried away with time, we just say “here, can you sign this” and yes, a lot of trust is put in us, and people hope we’ll do the right thing by them… They sign it because they need it. They need the procedure done …but they’re not at all confident that they are really safe… I think safety is a huge issue with informed consent. Midwife 4 Exactly what does (informed consent) mean…there is a problem I guess with informed consent, I do have a bit of a problem with informed consent, when talking one to one you’re getting what that person wants to give you and that will come across…and in situations like that, if it’s a health professional giving the woman knowledge to make her own decision you don’t know that it’s the same from woman to woman…it’s different for different women…it’s a bit of a minefield…you know…it’s huge really, isn’t it. Midwife 3 I think women go in blissfully ignorant… or at least not fully informed of what the possible outcomes are. Midwife 2 There’s many a woman referred here who doesn’t know why she was referred…because the referring hospital hasn’t told them anything…or the GP hasn’t told them anything…except …we’ve found a little problem, we need a second opinion on the scan…and then they come down and we say, yes your baby’s got spina bifida… and they didn’t know that was what was being looked for…they had no idea. Midwife 1 Often women are well informed and well misinformed…by a bit of web surfing…can be an interesting group of people to deal with because ultimately they may have read a load more than every other patient you deal with, you have to, once again, try and sort out what information they have received and put it in context. General Practitioner 1.

56

Chapter Four

Collectively, these comments reinforce the difficulties observed elsewhere, and outlined previously, that while women apparently actively participate in these routine regimes, they commonly do so from a position of poor understanding. Participation alone therefore should not be interpreted as representing ethically informed or robust intervention. These observations raise further questions of how practitioners may be better equipped to respond to the learning and informational needs of their patients. Concentration on Down syndrome as the condition of interest featured prominently in mothers’ accounts as a justification for screening, a focus that provoked comment from several practitioners. As an awareness of the numerous syndromes other than Down syndrome that may be indicated by screening is a central piece of information required to understand the strengths and limitations of testing, the exaggerated focus on Down syndrome raised alarm for some practitioners. However, one midwife interpreted some mothers’ preoccupation with Down syndrome as a demonstration of good understanding saying, Most of them are quite well informed and they know it’s a screening for Down syndrome, and most will say I’m having the Down syndrome screening, so the women that I have encountered are usually quite well informed. Midwife 1

Other practitioners expressed discomfort that the concentrated attention paid to Down syndrome ultimately created shallow and impoverished understandings which persisted at the expense of developing more thorough knowledge about the range of conditions and possible outcomes which potentially could contribute to false reassurance. Because of that focus on Down syndrome you can lose sight of the myriad of other problems…that pregnancies can have…and I do sometimes, more than sometimes, quite often put Down syndrome into perspective and just remind people that this is just one condition…and peoples’ understanding of what amnio or CVS result gives is just atrocious. Genetic Counsellor 2. I think they’re pretty uninformed, they think they’re only looking for Down syndrome, and when some other condition is picked up, like a heart defect but not Downs, or another condition, I think they don’t realise that’s a possibility…I don’t know what those providers tell them other than Down syndrome and it is targeted for Down syndrome but whether they say other anomalies could be identified at this time? Genetic Counsellor 1

Consent and Choice: Philosophical Constraints

57

None of the practitioners’ or mothers’ accounts, however, reflected any awareness of the broader social and historical dynamics that determined Down syndrome to be so universally unacceptable that significant resources and energy should be directed at preventing the birth of children with this condition. Similarly, there was no reflection on how the predefining of certain conditions as undesirable may influence how the offer to embrace the screening technology is received (Kenen, 1999). Just as Whynes (2002, p.7) concluded that the majority of women expressed satisfaction with routine ultrasound, ‘accepting the procedure uncritically’, initially most of the women in this cohort also accepted routine testing uncritically, similarly accepting and interpreting current protocols at face value and believing that all routine clinical procedures must necessarily be warranted and safe (ibid). Penny describes her interpretation of this dynamic, I think there is a level of, if they don’t ask, they mustn’t really want to know…but at the time I didn’t really know what I needed to ask…does that make sense? Penny

Possibly reassured by their practitioner’s confidence like the women in Whynes’ (2002) study, most mothers in this cohort remained unaware that there might be potential health risks with repeated ultrasounds, that each procedure has an accompanying false positive rate, that any reassurance may indeed be limited, or that the list of complications and anomalies not detected by these interventions far exceeds the list of those that are. Meanwhile, the apparent failure to provide appropriate, balanced, and comprehensive information in clinical care allows these seemingly entrenched misconceptions to be perpetuated. For most women, such misconceptions and false expectations are never revealed, their scans are normal, and they ultimately birth a healthy baby. However, for the remainder, those who experience soft markers, elevated blood markers, increased age adjusted risks, or recommendations of amniocentesis, the anxiety experienced is undoubtedly compounded by their lack of informedness at the outset.

58

Chapter Four

Presumed Consent A final note will be made about the presumption of consent in the medical context, as this is often the basis upon which screening is undertaken. Clearly consent doesn’t always require a signature on a form or a verbal agreement, and a practitioner may reasonably presume that consent is given by the actions of their patient as this GP explained, If you’re thinking just about routine blood tests, checking a person’s haemoglobin, you know it’s perfectly ordinary practice not to ask for specific consent, there’s an idea of implied consent, like someone rolling up their sleeve to get a vaccination, that’s an active action saying that they consent to the procedure, so, there are all sorts of situations like that where there’s no specific consent form, or even a verbal exchange, but that’s not to say consent isn’t given. General Practitioner 3.

Braddock et al (1999) noted earlier that the seriousness of the consequences of any particular intervention demanded different rigour in informing for different procedures. Commonly, the level of consent sought is linked to the level of invasiveness of the procedure. The most common forms of prenatal screening are ultrasound based and subsequently noninvasive, hence, less rigorous consent protocols that undermine active patient participation have become normalised. The practitioner comments below illustrate the pernicious nature of embracing the presumption of consent as an acceptable benchmark which may fulfil the legal requirements of consent, but which arguably falls short of the ethical standard sought. I think most doctors have the view that once an appointment is made and a woman has turned up and she lies down on that table then that’s consent...once she is on the table and the doctor or sonographer explains what they’re looking for and what they’re doing…I guess that’s taken as informed consent without signing a paper. Midwife 1 I think the medical profession might view informed consent as getting on the bed and saying you’ll have a needle or sitting and looking at a scan…we don’t get patients to sign consent forms for anything here as far as I’m aware…I mean in the foetal medicine unit...even for CVS and amnio…it’s something I’ve raised whether we should discuss consent forms…and that type of thing… but the doctors feel that informed consent is them getting on the bed and laying there. (I: Do you disagree with that?)

Consent and Choice: Philosophical Constraints

59

Maybe?...I think when I have to sign a consent form it makes me consider exactly what I’m doing so, I guess coming from the genetics side of things we have a lot of consent forms we get people to sign when they have a gene test…so that people understand the implications, the risks and so on. Genetic Counsellor 2

The presumption that non-invasiveness negates the need for rigorous consent has infiltrated practice, opening a logical space to regard consent as somehow less important, and allowing practitioners to equate ‘noninvasive’ to ‘innocuous’. However, this premise negates the multiple potential harms including the intense psychological harms, which persist regardless of the level of invasiveness (Kowalcek et al. 2002). In their 2002 comparison of anxiety between groups of mothers undergoing prenatal ultrasound, Kowalcek et al (2002, p.22) concluded that ‘before examination, the ultrasound group indicated the highest, although not statistically, level of depressive reactions in spite of it being a non-invasive test’. In the case of prenatal screening, where the outcome may lead to the termination of a pregnancy, the ethical stakes are high and consenting protocols must be rigorous regardless of the level of invasiveness. The potential to uncover serious health problems with significant implications for parents should flag prenatal screening in all its forms as an area of intervention requiring a more thorough, explicit, and ethically secure approach to consenting patients. While we may accept, as Beauchamp and Childress (2001, p.88) do, that because ‘actions are never fully informed, voluntary or autonomous, it does not follow that they are never adequately informed, voluntary or autonomous’, we ought remain vigilant to institutional practices which erode and undermine the opportunity to examine the moral implications of any medical intervention for the patient.

Chapter Summary In summary, the experiences of the cohort of this study certainly demonstrate a consistent failure to achieve the ethical safeguard of informed consent as articulated in these particular accounts. While respect for autonomy through seeking a patient’s informed consent may theoretically support freedom of decision making, it does not automatically follow that a person has been made aware of, or is in a position to actualise, their preferred option. The socially and institutionally embedded nature of medical decision making dictates that such decision are always relationally constructed and constrained. The strong legal bias that informs institutionally developed consent protocols have focused attention too

60

Chapter Four

heavily on facilitating the practitioner ‘getting’ consent, while inadequate attention has been given to supporting the reflective understanding of the patient giving consent. Critical questions of who informs, what they inform, and for whose benefit the information disclosed is chosen remain concealed under the dominant paradigm. Yet these questions form the basis of a hermeneutically aware, ethically responsive, and inclusive decision making. Thus, the dominant interpretation of autonomy and informed consent must be expanded to embrace and accommodate the relationally embedded dimensions of autonomy. The next chapter will examine some of the particular institutional constraints that impinge upon women’s and practitioners’ capacities to support informed consent in clinical care.

CHAPTER FIVE CONSENT AND CHOICE IN PRENATAL SCREENING: INSTITUTIONAL CONSTRAINTS

Institutional factors that may undermine informed consent in practice include the routine nature of screening, overt and covert counselling, and barriers to communication. Other factors include the pressures of limited time and resources, in addition to the impact of existing legal frameworks on institutional policy and practice. Each of these factors will be considered in relation to the wider body of established research and the stories shared by this group of mothers and health practitioners.

Routine Testing and the ‘Normative’ Pathway Previous studies have suggested that the reassuringly routine way in which screening is presented to women implicitly presumes participation and, therefore, may obscure the voluntary nature of the proposed test (Santhalahti et al. 1998; Lippman 1999; Markens, Browner, and Press 1999; Williams, Alderson, and Farsides 2002; Press and Browner 1997; Green et al. 2004). Press and Browner (1997) further suggest that routinisation obfuscates the need for women to make a deliberate decision and similarly blurs the practitioner’s obligation to intentionally inform their patients. However, routinisation may be welcomed by some women, allowing them to frame such decisions as simple formalities, and thus bypass the ‘moral work’ (Williams et al. 2005, p.1987). As understanding the optional and voluntary nature of any medical intervention is a crucial precursor to informed consent, any routinisation which does not explicitly alert patients to the alternative choice of ‘opting out’ inevitably undermines the worth of the consent given. As Green and Stratham note, ‘acceptance of routines because they are routine means pregnant women do not necessarily make an informed decision’ (Green and Statham 1996, p.143). The observation of under-informed compliance

62

Chapter Five

was evident in the experiences of five of the seven participants in the mothers’ cohort of this study. For example, Terri, who unexpectedly fell pregnant with her fourth child at the age of 38 remarked, I guess because I was a bit older, there were questions asked and it was almost assumed that there were certain things I should do. I was asked quite a few times whether I wanted these tests done. I guess being older, I was 38, because I had gone over the 35 ‘hill’, over the hill (laughs), a lot of the doctors and nurses who saw me were saying “what sort of tests would you like - we need to be careful”… I felt it was a case of I ‘should’ have the tests… Definitely, it was promoted as everyone does it, especially if you’re over 35.

Danielle, Anne and Penny relayed similar accounts of the events and expectations that culminated in their screening experience. I just assumed that’s what you do…it’s routine...I never imagined there would be anything…I honestly thought it was just a routine exercise that you had to do…the hospital said you had to do certain tests at certain times…in my opinion I don’t think they give you the impression that it’s voluntary…it’s expected, I don’t know that if you said no…I realise they couldn’t force you to do it…but, yes, it’s expected…mostly from the hospital…they have expectations that you do this after this and so on…so I imagine that you didn’t really, as such, have a choice not to do it. Danielle No, I did not understand that it (ultrasound) was voluntary, when I was told that it was routine, I thought that that it wasn’t voluntary therefore I never questioned whether it was a voluntary thing or not. There was no reason given as to why the scanning ultrasound was done. She (GP) said it was a routine scan, she wrote me the form to take to the radiologist and there we are. Anne Basically, the obstetrician said that this was the standard process – it was just like – you have a 12 week ultrasound – here’s your request form and off you go. Yes, everybody does it; I assumed he just sent everybody…I think it really wasn’t presented as a ‘choice’, it’s just this is what you do… And being my first pregnancy, I just thought well this is what you do…like every one has this scan and then another one and that’s the process in the medical world. Penny

These stories resonate with Santhalahti et al’s (1998) observation that when the option to test is presented routinely with explicit expectations of compliance, participation is interpreted as ‘self evident’. Under such circumstances it may be harder to ‘opt out’ of the accepted and expected routine without appearing ‘difficult’ or ‘uncooperative’ (Press and

Consent and Choice: Institutional Constraints

63

Browner 1997; Williams, Alderson, and Farsides 2002), as Terri further noted, It does make it harder to say no, because it means that you have to go out of your way to actually say ‘no, I don’t want it’. Terri

Similarly, Penny encountered pressure from her doctors when attempting to ‘opt out’ of the expected amniocentesis after her nuchal scan revealed a higher than usual age adjusted risk. She explained, So we’re sitting there looking at each other, thinking we’re not going to do anything about it and they’re sitting looking at us saying “Well, you really should have the amnio and that will tell you more definitively if there’s a problem”, and it was like we really had to stand our ground, to say no… We’ve already thought about this …and we don’t want it. (I: Was that presented as a “you should” or was it more, “here is an option to consider”?) Oh, it was definitely a “you should”…it wasn’t an option...it was an expectation. They were booking an appointment for me the following week to have the amnio, and we were saying, but we don’t want one…and it was difficult actually to sit there and keep saying “no, we’re telling you we don’t want it…yes, we understand the risk, you’ve just told us the risk is this percentage”, but for us that wasn’t the point. You could see that they thought we were not making the right decision, and that they were concerned for us – they were re-presenting the facts of the results, and re-presenting the low risk of amnio… And we were like, yes we understand that, but were still not doing it. Penny

While Penny resisted the pressure to conform to the expected ‘next step’, for others, such as Mary, the obvious expectations of her doctors, coupled with her unwillingness or lack of confidence to question the gathering momentum for more testing created a situation in which Mary later described herself as having been ‘railroaded’ into having an amniocentesis. The main thing for me was not knowing, not knowing what the different outcomes of the tests were…and just being railroaded with it at the time. (I: Did you feel railroaded?) Yes…I think that’s the best way to describe it…The specialist who gave me the results…he was very in your face…he was very good but very in your face with the results…he said “shall I book you in for this…(amniocentesis)…its your option but...if it was my wife I’d be making her do it”…OK! We went home and spoke to our obstetrician

64

Chapter Five before we decided…but even information on that wasn’t readily available either which made it harder. Mary

As these mothers experienced, once such routines are entrenched, they become the accepted benchmark of care, self-perpetuating, and often unreflectively endorsed. The tacit social and medical presumptions and unequal power dynamics implicit within the institutional frameworks of medical care silently funnel women down the predetermined normative pathway. The routine inclusion of newer under the rubric of an older established antenatal routine of having an antenatal ultrasound has further blurred the principles of consent and voluntary choice. While Whynes (2002, p.11) positively notes that ‘… routinisation of use appears to have given rise to routinisation of subject acceptance’, when women are conditioned to expect particular interventions, the extension of accepted protocols such as ‘the 18 week ultrasound’, and more recently the ‘12 week ultrasound’, further blurs intentional consent as the starkly different clinical aims of each test may not be differentiated by women (Kenen 1996; Press and Browner 1997). This was certainly the case for Penny, who explained, Basically, the obstetrician said that this was the standard process – it was just like – you have a 12 week ultrasound – here’s your request form and off you go. (I: Was it presented as something everybody does?) Yes, everybody does it; I assumed he just sent everybody, and you know I guess I just took his word for it…I had thought I would only have an 18 week scan, but...that was obviously not the case. So, I booked the appointment, went to the hospital, and really didn’t know what I was there for so I thought…I better read a brochure, one that was floating about … Penny

Practitioners too struggled with balancing the tensions between the need to devise methodical, institution wide processes which ensured appropriate care at the appropriate time, and the potential undermining effect such routinisation could have on patients by eroding voluntariness and not providing time to build adequate understanding. Most practitioners in this cohort articulated some tension between balancing the logistical demands of seeing multiple patients in a busy clinical environment with the time-consuming desire to respect voluntariness, support education and honour informed consent in patients. Additional time pressures resulting from the biological trajectory of pregnancy create further impetus to act before the medically preferred window to terminate before 20 weeks

Consent and Choice: Institutional Constraints

65

passed. Recognising that methodical organisational processes can gather a momentum of their own, engulfing and undermining the practicing of genuine ‘choice’ for patients, the comments offered by this GP highlighted the potential dangers and ‘choicelessness’ that routinisation potentially creates for women. I think because of the structure of antenatal care in Queensland, they really have to have a set thing where there are predetermined tests at certain times so that the obstetricians who are ultimately in charge have all the information they want, so it’s very easy that we as doctors just slot in to that…so that’s my fear…that we present it as an obvious thing to want, that we medicalise the whole process. My other fear is that other GP’s out there doing shared care, who themselves have no ethical problem with termination; they will present it as a good idea. I think if it’s presented to us as GP’s and we are really told pretty much that we have to offer them to patients or we are not giving patients freedom of choice, but it’s presented in such a way that ‘of course you would want this test’, and we present it that way, then we don’t really give them a true choice. General Practitioner 2

These sentiments were further reinforced by a midwife, who reflected, Because it’s offered to everyone, it’s just another step in the routine…so we just do it without really making sure we know what the implications are, we don’t ask all the questions…I wonder if that’s how it comes out…so many people look at the 18 week morphology scan as an opportunity to get a picture of the baby and find out the baby’s sex…which is of minor medical consequence…its not diagnostic…so its of such small consequence…yet to many women that’s the big thing…are they taking the 12 week scan the same way without really, really understanding what we’re doing? Midwife 3

While practitioners generally agreed that routine presentation could undermine voluntariness, some minimised the potentially powerful culmination of social pressures to conform that routinisation created, holding on to the belief that the exercising of individual choice was ultimately simple and unencumbered. Responding to the question of whether routine presentation obscured voluntariness, the following responses were offered, Well it (routine testing) could obscure voluntariness...I suppose that’s possible with anything…it’s offered to every woman but it’s up to them whether they take it or not, so long as they know what it means. Midwife 1

66

Chapter Five Possibly, however…yes, I think it does. They don’t have to have any tests. Genetic Counsellor 1

Just as institutional logistics contribute to routinisation, patients’ demands and expectations have also been found to contribute to shaping the dynamic of routine screening with several studies confirming that women want such intervention (Stephens, Montefalcon, and Lane 2000; Whynes 2002; Harris, Connor et al. 2004). In conforming to the social norms of responsible pregnant behaviour, another GP cited patient expectation as a real driving force in how such routine protocols evolve, I think there can tend to be a routinisation of things, whatever they are…there’s also an expectation that certain tests are available would be offered and a number of people may think that if they weren’t offered, and then there would be something wrong. Of course what’s in their mind is that it’s a routine test, at that point, while there’s little doubt that whatever you say they will go and have it done, you could discuss why they’re having it done, that may have been explained or may not. General Practitioner 3 I don’t know who is driving it…obviously consumers want it...Genetic Counsellor 1

Such ‘consumer demand’ was evident in Leanne’s account, when she explained, I told her (the doctor) I would have it (amniocentesis) done…and she was like…she wasn’t going to put me off because she could see I was quite strong about it. Leanne

Although Penny, Terri and Danielle passively conformed to the routine of screening initially, when further diagnostic testing was indicated, they forcefully declined, resisting clear directives from their various doctors to accept the next step in the pathway, illustrating that indeed, mothers ‘don’t have to have any tests’. However, their physicians’ reactions to their rejection, including paternalistic reactions of rebuke and reproach, created distress and anger for these women which significantly soured their ongoing relationship with their carers. While several practitioners of this cohort defended their belief that no person ‘had to’ test, routinisation coupled with admonishment for not complying may indeed create powerful pressure to conform. As Stapleton and Kirkham (2002, p.639) have observed, institutional structures and selective information can be

Consent and Choice: Institutional Constraints

67

massaged to encourage patients to make the ‘right’ (clinically endorsed) choice, rather than the (subjectively interpreted) ‘informed’ choice. .

In assessing the impact of routinisation on voluntariness, comparable studies in the Netherlands provide valuable insights into the effect such routinisation has on the uptake of prenatal testing. As a country which prohibits all routine screening that may pose a psychological or physical health threat to the person being screened (van den Berg et al. 2005), the routine offer of prenatal screening is prohibited by law in Holland. Van den Berg et al (ibid, p.84) explain: ‘One of the categories of the population screening that requires ministerial approval is screening for ‘serious disorders that can be neither treated nor prevented’. Prenatal screening for congenital disorders comes under this category, since the legislature considers termination of pregnancy as neither treatment nor prevention (Health Council of the Netherlands: Committee on Population Screening Act, 1996). Since there is no approval for this type of screening in the Netherlands, it is forbidden to offer prenatal screening to women unless they request it.’

Under the rubric of non-routine screening, uptake rates in the Netherlands have been reported at 46% (ibid), under half that of the rates of up to 99% acceptance recorded in situations where routinisation is entrenched (Spencer et al. 2003; Thornton et al. 1995). Such figures suggest that uptake may be largely dependent on how a test is offered, and may not necessarily indicate intentional or informed choice by the participant. Attempts to conflate high participation rates with ethical acceptability such as those made by Whynes (2002) or Cuckle (2001, p.85) who suggests that high uptake indicates ‘no conflict’ must therefore be challenged. While routinisation is unproblematically accepted, advocates of routinisation such as Whynes (2002, p.11) conclude ‘such a trade off between a large number of reassured, negatively tested subjects against the small number of distressed positively tested subjects is endemic to all screening programs and not only scanning in pregnancy’. Interestingly, Whynes (ibid) notes that no participants questioned the purpose or safety of ultrasound, presuming it to be safe, although only one in ten women described themselves as ‘informed’. Perhaps as van den Berg (2005), Kowalcek (2002) and Lippman (1991) postulate, the reassurance women report may simply be relief from the stress generated by the test itself.

68

Chapter Five

While routinisation may contribute to inhibiting informed consent, some researchers advocate for more tests to be offered routinely as a means of strengthening and supporting informed consent (Dormandy et al. 2002), with Levi (2002) further cautioning that lack of routine access may restrict diagnosis of serious malformations and thus deny access to the choice of a desired abortion (Levi 2002). These authors suggest that not routinely offering screening creates additional practical barriers and therefore undermines the practical exercising of autonomy. Dormandy et al (2002a) observed that double the number of women accepted routine nuchal translucency scanning when offered as part of a battery of other routine tests such as routine blood tests1. They further concluded that women undergoing screening on the same day visit had higher levels of knowledge2 and more positive attitudes than their ‘separate visit’ counterparts claiming, ‘conducting screening as a part of a routine visit, compared to screening that requires a separate visit, seems to maximise informed choice to undergo the test without impairing informed choice to decline’ (Dormandy et al. 2002, p. 113 ).

These findings speak to the important impact that practical accessibility has on influencing women’s behaviour, however, critical details of the difference in how these tests were offered at each hospital or the impact of the non-standardised information used are not disclosed in this paper. The further ethical distinction between choice and informed choice are also not fully explored. Particular contextual and institutional factors, such as the attitude of the nursing staff, the perceived time pressures, potential bias in the information imparted, or different ways of administering the tests, all of which have significant influence on the outcomes, are also not fully divulged. Hence, the conclusions drawn in this paper may not be as obvious as suggested and certainly require further exploration before such claims can be confidently made. While reducing physical barriers may facilitate informed choice for some women, for others routinisation potentially denies the opportunity to 1

Figures dropped from 41% acceptance to 21% when a separate visit was required to take up the offer of screening (Dormandy et al, 2001, p.109). 2 There are functional cognitive reasons explaining the apparently higher knowledge levels assessed immediately after information is given which do not necessarily indicate higher levels of understanding and these will be more fully considered in Chapter Nine.

Consent and Choice: Institutional Constraints

69

explore, assimilate, and reflect upon the information given. Indeed, the offer to be tested immediately may be experienced as coercive in that the perceived time pressure could be interpreted as a strong recommendation to participate, creating a sense that women may ‘miss out’ if they decline the offer here and now. This situation is described by one GP in thus study, I think if they make a decision quickly they’ll tend to go for the test, so they’ll decide not to miss out, they have it done and think about it later, but they don’t want to miss that opportunity and regret that later…and then they’re on the treadmill. General Practitioner 2

While removing the ‘practical barriers’ may increase immediate uptake it may deny a patient the opportunity to seek alternative information from different sources. Within the scope of the studies completed (Dormandy et al. 2002; Michie, Dormandy, and Marteau 2002, 2003; Marteau, Dormandy, and Michie 2001) the reasons why women chose not to return for follow-up screening were not pursued and attitudes after the initial consultation were not re-assessed. Perhaps as Santhalahti et al (1998) suggest, the reason many women decline is not because they have a philosophical objection or a practical barrier, but rather screening is not the priority practitioners often assume it should be, a point re-iterated by Liamputtong (2003, p.101) who observed, ‘women’s subjective perceptions may be divergent from those of health care professionals’. In conclusion, the benefits of routinisation are that administratively, routine protocols ensure that medically valued tests are methodically carried out at the clinically appropriate time. Additionally, for some women the practical barriers of undergoing the test are removed by routinisation. However, these potential gains appear to occur at the expense of a fundamental condition of informed consent which is time to absorb and reflect upon the information given with time to develop a sound understanding of the implications and outcomes of the processes consented to. In the case of assessing the health of an unborn child with the potential view to terminate a pregnancy, the potentially wide ranging ethical implications arguably warrant fuller consideration than those afforded by routinisation. Without accompanying ‘routine’ education to ensure that adequately informed decisions are reached, routinisation coupled with the expectation of compliance remains ethically problematic. Equally, however, while much of the research evidence suggests that many women participate in a routine and inadequately informed way, this

70

Chapter Five

does not automatically infer that they have been coerced or acted upon against their wishes. Nor does it automatically follow that their autonomy has been violated as many competent autonomous adults choose to defer to the medical ‘experts’ (Schneider 1996). However, we can infer that without access to appropriate education, the outcome of routinisation appears to have been a weakening of intentional and voluntary consent for many women, as recognised by many practitioners in this cohort and evident in the accounts of five of the seven mothers of this cohort.

Institutional Barriers to Education: Blurred Accountability for Informing While the offer of screening is an established and accepted part of the antenatal routine, the accompanying education required to inform patients about the purpose and potential outcomes for this cohort of mothers often seemed ad hoc and chiefly dependent on the personal commitment and knowledge levels of individual practitioners. The technical aspects of testing are institutionally embedded, while the preliminary educational aspects are left ostensibly to the discretion of individual practitioners and largely dependent upon their own level of knowledge. All health care professionals interviewed in this study articulated a strong commitment to the ideals of informed consent supporting its aims and intentions, with many demonstrating sound educational strategies such as providing individualised written information or asking patients to paraphrase back their understandings to support their decisions. However, a significant finding from this research is that confusion and lack of accountability surrounding where, how, and who was responsible for informing patients created a significant gap in the ‘informed’ consent processes. A consequence of the shared nature of antenatal care in the local context of this research is that most women move between various health professionals for different parts of their care. Typically, a woman will see a GP, an obstetrician, perhaps multiple midwives, a sonographer and possibly a genetic counsellor if indicated. This compartmentalised delivery of care creates a situation in which each practitioner may reasonably presume that another practitioner has taken responsibility for informing. This was evidenced in the accounts given below: (I: Who is responsible for patient education?) The first contact person the patient sees for that pregnancy. Obstetrician.

Consent and Choice: Institutional Constraints

71

Basically if they are going through a private obstetrician, in my mind it’s up to them to talk to their obstetrician about that…so I might say…you need to book with your obstetrician before 10 weeks to give you time to discuss it and decide ( about testing). General Practitioner 2. Probably the scanning department…they could say, ‘well, you’ve presented here for a scan today, what do you think we are going to find or what do you hope we find?’ Midwife 2. Well what sort of education…we have our antenatal classes, but for prenatal screening...I don’t know that anyone is responsible...I think we are relying on the GP’s to act ethically and responsibly and if they are going to order the test then they need to make sure they know what they are doing. Midwife 3. They all see the genetic counsellor beforehand and if the result is out of range they will see her again…but I think she sees everyone having a nuchal…yes…and this is where she tells them about false positives and false negatives…she does see everyone. Midwife 1.

The genetic counsellor referred to above subsequently explained that she did not in fact see everyone. In a hospital in which all women regardless of risk status were offered nuchal translucency screening, in which approximately 100 babies were born each week, she was able to counsel only between 10 and 20 women. She explained It is quite disjointed…there’s no set process…it does feel a bit haphazard. (I: How many women do you counsel for Nuchal Translucency?) Very, very small…In an average week I would see 10-15 women, 20 at most…very, very small, very small. Everywhere has different processes and protocols…every GP has different processes and protocols too…so that inequity depends on where you go as to what you’re offered…it’s clearly not a fair or just way to go…but at the end of the day it’s up to GP’s, obstetrician, genetic counsellor, I guess whoever the patient presents to…I guess…antenatal clinic...but it is haphazard…mmm…for sure. Genetic Counsellor 2.

For mothers trying to access the relevant knowledge, the lack of information proactively offered proved to be a further barrier to the consent process as Mary explained, Information on that wasn’t readily available (on amnio) either which made it harder. (I: Where did you find the information you wanted?) I rang the specialist and asked them to send it to me.

72

Chapter Five (I: Are you saying it wasn’t offered…you had to request it?) No…it wasn’t offered…They sent me a two page list; there was spina bifida, all these different ones…I’d never even heard of most of them…they said because you have this result it’s pretty likely you’re going to have one of these…there was a two page list of them. Mary

Mary’s experience highlighted further lapses in the communication and education process, where disjointed information was divulged in a fragmented fashion by various practitioners, We got there for the scan and got given some paperwork that said they would scan the baby…on the day…the person who did the scan explained what they were looking for…they took a detailed history of how old, how many pregnancies and so on…that happened 5 minutes before the scan. (I: Was there any discussion about false positives, false negatives, and possible next step after a bad result?) No….no…nothing...they said we’re looking for a result of 1:6003 if it’s over that you’re fine…if not we’ll look at other options...and then they did it (I: What did you understand those other options to be?) Well she didn’t talk about that because she was just doing the ultrasound. Mary

Later describing herself as ‘not even remotely prepared’ Mary’s concluding remarks reaffirm how her lack of knowledge contributed to the intense emotional anguish she subsequently experienced. I think a lot of people just aren’t aware of what can and can’t happen with these tests…and I honestly think there needs to be a lot more information out there for the public...well and truly...Information that can tell you…OK, we do this test, this is what its for… because I had no idea…and there was no-one for me to talk to … Who do you talk to ...there’s no 1300 number to ring…what are my options? What do I do? I think that needs to be available…I was a basket case…I just sat in my room and cried…its not good feeling that way when you’re pregnant…being on sedatives because you’re so worked up you can’t sleep with worry…so yeah…Mary

3

In the risk discourse of pregnancy, anecdotal stories of risk ‘slippage’ are common. Although elevated risk used to be considered as over 35 years old or above 1:350 from blood tests or Nuchal, frequently women report being categorised as ‘high’ risk at 31, as Danielle was, or with a Nuchal age adjusted risk of 1:500 as Terri was.

Consent and Choice: Institutional Constraints

73

Other mothers similarly described poor educational opportunities with their practitioners and their turn to the internet to clarify and allay their concerns. Accordingly, most of the mothers in this cohort described themselves as ‘self educated’ about the details of testing. While self education is not necessarily a bad thing, the turn to the internet perhaps indicates a gap in communication with those practitioners best placed to help or interpret the overwhelming and often contradictory information available on the internet.

Communication – Commitments and Barriers ‘Strangers taking care of strangers can come to be as pathological a factor in certain situations as sepsis’ (Wear, 1998, p.95).

As previously outlined in this work, dialogue and communication lie at the ethical core of the inter-subjective encounters between human beings. The ability of patients and physicians to communicate effectively is therefore an essential element of medical care, as it is through these dialogical encounters that mutual appreciation and understanding may emerge. Consequently, barriers to effective communication contribute significantly to the ethical failures observed both in the existing literature and for individual members of this research cohort. Within organisational care, power dynamics, organisational hierarchies, time pressures, financial pressures, under resourcing, and inadequate support and training of staff, are recognised as converging to undermine successful communication (Stewart 2001; Stewart et al. 1999; Leithner et al. 2006). Research into communication patterns between health carers and patients predominantly paints a bleak picture (Leithner et al. 2004; Bub 2004; Leithner et al. 2006). For example, in Leithner et al’s (2006) study gauging pregnant women’s assessment of attitudes, information, and communication styles of their physicians, only 22% felt ‘satisfied’ with physician attitudes, with a high 46% reporting strong dissatisfaction. Almost 30% of respondents cited lack of time as a factor in the paucity of information received leading Leithner et al (ibid, p.936) to conclude that women in their study generally experienced a ‘striking lack of communication competence in nurses and physicians’. Poor physician/patient communication was experienced by many mothers in this cohort who noted a similar lack of information, emerging from a ‘don’t ask, don’t tell’ dynamic of communication that left them ill prepared for sequelae of testing. Penny summarised,

74

Chapter Five I think there is a level of, if they don’t ask, they mustn’t really want to know…but at the time I didn’t really know what I needed to ask…does that make sense. Penny

This experience was reiterated by Terri, who identified lack of time and poor communication as significant factors in her negative experience, I did ask questions and they were answered very directly, maybe I just didn’t ask the right questions? I certainly mustn’t have with regards to the tests that I had, at the same time I did say that my cousin’s child had this, and I was concerned about that, so they sent me off for those tests. Now I would say there was a definite lapse in communication. I do think the communication issues are a bit of a problem there. It’s hard to say, I think it comes down to the speed of service, they are seeing so many women, and they don’t have the time. Terri

As Terri hints, her revelation that she harboured some concern may have prompted her doctors to act in the way they did, highlighting the patient’s contribution to shaping the quality and dynamics of the dialogues experienced (Post, Cegala, and Miser 2002). Patient input was frequently cited by practitioners as a significant factor shaping how each consultation unfolded. The attitudes, openness, and intellectual capacity of patients were frequently raised by practitioners when explaining the poor communication patterns noted, as one doctor explained, I think we modify our consent discussions to include what we perceive the patient will understand…that’s certainly one of the issues; you tell the patient what you think they can understand, so you probably will tell an educated patient more than a lower educated patient. Obstetrician

Although Mei-The et al (2000) were assessing communication patterns between cancer patients and their doctors when they noted ‘patients had more influence on what was and was not said in the consultation than might be expected’ (Mei-The et al. 2000, p.1379), physicians in this cohort generally expressed that patient influence in poor communication was also prevalent in the prenatal encounter. Mei-The et al (ibid, p.1381) concluded that, ‘breaking the cycle of collusion between patient and doctor is not necessarily a question of whether the patient has to be informed at all, which usually is the case, but rather how doctors and patients deal with these facts in practice. Awareness cannot be forced on the patient’.

Consent and Choice: Institutional Constraints

75

Similarly, Post et al (2002) acknowledge the interdependent and dynamic nature of communication, noting the active role that patients played in shaping the quality of the informing process experienced. Several practitioners in this study strongly rejected the presumption that poor clinical communication stemmed solely from the practitioner half of the communication dyad, acknowledging shared accountability with their patients. Well, communication is a huge problem…a big problem…and this is where you wonder how much people actually do understand, have a full understanding…medical jargon…it’s always been a problem and I think it always will be…I guess the thing is you need to ask them what they know and what they’ve understood…and they will say ‘yes, yes I know’, but then you ask them to paraphrase back what they’ve been told and they look at you blankly or they have it all mixed up…or they really don t understand. Midwife 1 Girls go along to the doctor, first time they’ve ever met this guy, female, whatever, to find out they’re pregnant, no rapport, no nothing…and yet, you’re supposed to believe whatever this person tells you …and I might say from both sides of the fence…I might tell you, .patients can lie as well as any other person...or don’t tell you the whole truth or give you the whole picture. Midwife 2. The problem is that they don’t understand the dynamics of testing …there’s the grey zone…there are the absolutes but there is a huge grey zone that may create more anxiety than anything else…that’s when I think they are not really aware enough…Then again, their level of education affects that as well…not everyone has the capacity to understand why something can or can’t show you something. Obstetrician

Further comments alluded to the difficulty some practitioners had in determining what information was relevant. The desire to collude in protecting patients from unnecessary anxiety, while still making sure all medically relevant tests were performed, and all material risks disclosed prompted the following comments: I don’t know that it’s a breakdown (in communication), its just that a lot of information is not given because it feels extraneous at the time, like it’s an extra burden, and with a very low chance of it happening why would you talk about all the potential possibilities…unless you’re dealing with the reality of what’s there…I think it’s just time, economics and emotional burden…why would you worry someone about something that’s highly unlikely. You do need to advise that there is a small risk that something

76

Chapter Five unlikely could be found, but you wouldn’t go into detail about all the possibilities. Its economics I think…time and emotional burden. Genetic Counsellor 1 I think the barriers are a couple of things, as soon as a woman finds out they are pregnant, their level of anxiety is higher anyway, and they always do tend to worry about their baby. People are worried about exacerbating this anxiety by mentioning the possibility of an abnormality, so we don’t actually tell people, well, your risk of miscarriage in the first 8 weeks is 15%, between 12-20 weeks it this much and so on…the chance of stillbirth after 20 weeks is 1 % and so on…You don’t tell women those things…and likewise mentioning anything about abnormalities, you don’t particularly mention to people that well…5% of all babies can be born with something because you don’t want them to worry. So, that’s one of the barriers, not to worry the pregnant woman so much and so that effects how much you actually talk about, so you kind of order these tests and they know it’s kind of that they may be looking for a problem, but they are not truly informed about exactly what it is that is being looked for and how accurate it is and what we can and can’t pick up…so I think that’s one of the biggest problems. Obstetrician.

While the motivations of these practitioners are clearly well intentioned, the decision to exclude patients from a collaborative negotiation on what information may be relevant occurred mostly without reflection, entrenching Edwards, Elwyn, & Mulley (2002, p.827) observation that ‘information is communicated only from the clinician to the patient, and that the acceptability is communicated back’. However, Edwards et al (ibid) continue, proposing that a ‘two way exchange about information and opinion is important if decisions are to reflect the attitudes to risk of the people who will live with the outcomes’. This wellestablished research suggests that the discernment of what knowledge is pertinent to the patient is not uncovered, further entrenching the asymmetrical power dynamic, a status quo that stifles authentic reflection and dialogue between patient and practitioner, and which undermines patient-centred care. Practitioners of this cohort further noted that information is often given in a time of crisis; hence, the ways in which it is received and assimilated may be distorted by the emotional anguish of the circumstances. I guess the big barrier (to effective communication) is that, it’s a crisis, you know it’s emotional turmoil and you’re trying to understand information when the rug has just been pulled out from you, and you know it’s important information, but…you’re emotionally not very well equipped to handle it at that stage. Having said that, it’s amazing how much people do

Consent and Choice: Institutional Constraints

77

understand and learn, and you know...come to grips with what they need to know in a crisis. I guess I’ m conscious of the fact that…often people are not in the best position to absorb a lot of detail, or information, so I actually think it’s a mistake to try and burden them with resources and handouts and things like that. We shouldn’t have that expectation of them that they should take in a lot of new knowledge at that point in time. Clinical Geneticist Often the information comes as a shock so they can’t really deal with it they don’t understand too much unless it’s a lethal condition and the baby, it’s just a matter of time before the baby will die, they tend to understand, like black and white. The subtleties are often lost. Genetic Counsellor 1

Illustrating the ability to focus and give attention as a critical precursor for learning (Woods and Barrow 1975), Danielle described a scenario in which her emotional distress, coupled with the distraction of her other children running around the room, created a lack of attention that limited and distorted her understandings, resulting in a poor educational outcome. I couldn’t have possibly understood the things she said to me…to the point where we would get home and (my husband) would say, (the doctor) said this and I would have completely forgotten that ...he was focussing on the facts and I was in a head spin…I mean she’s a good doctor, but I think she should have rung and said I don’t want to alarm you but...I need to speak with you and your husband on your own …because we brought the kids with us and so with the other two running around the room, that was a huge distraction...that I think perhaps…they tread a fine line...should they ring you up and make an appointment …and start you worrying from that second? If she ever asked my opinion, I would suggest that if she dealt with couples in that circumstance again that she maybe do it differently. Danielle

While it is improbable that any person could ever be fully prepared for all eventualities, as the sole purpose of prenatal screening is to uncover problems, it is predictable that problems will be found in some cases. Therefore, this possibility should be pre-figured in women’s minds prior to testing, to foster some awareness that may lay the groundwork of preparedness for those who experience an unwelcome result. The question of whether the poor preparedness for potentially bad news intensifies the trauma experienced when the unwanted and unexpected ‘bad’ result does eventuate is not the focus of this study. However, given that robust informed consent has been frequently associated with enhanced patient acceptance of good and bad outcomes, more research is warranted in this area of antenatal care.

78

Chapter Five

Overt and Covert Counselling While the nature of patient/doctor, or patient/counsellor, interaction in prenatal screening is often idealised as being non coercive, non-directive, and respectful of the patient’s free choice (Fineman and Walton 2000; Anderson 1999; Williams, Alderson, and Farsides 2002), the potential to exert influence in medical decision making is widely recognised by health professionals who acknowledge the difficulties in maintaining a neutral, unbiased approach (Williams, Alderson, and Farsides 2002, 2002). For many women the mere offer of a test will be viewed as a tacit recommendation (Williams, Alderson, and Farsides 2002; Press and Browner 1997), while the presentation of a diagnosis predefined as undesirable (Kenen 1999), and couched in the negative language of burden and risk, may encode a subtle inference about the (un)desirability of the child in question. Coupled with routinisation, clear directives about expected behaviour are felt by women. Indeed, nearly 70% obstetricians interviewed in Marteau’s 1994 study admitted to directively counselling couples to terminate affected foetuses (Marteau, 1994 cited by Shakespeare 1998, p.668) reflecting deeply entrenched social and institutional biases, biases that Hubbard (1988, p.232) suggests create a situation in which individual women implement society’s prejudices ‘so to speak, by choice’. The following practitioners’ comments elucidate some of the issues associated with trying to dispense unbiased, value-neutral advice in a nondirective way. Walking the fine line between providing the professional advice and expertise patients sought, while remaining cognisant and respectful of the patient’s input and wishes proved a difficult task for some. I try very hard to be non-directive...I do…I think it’s possible. Genetic Counsellor 2. I guess it’s just how you present it…with older women…here we go again presenting subjective stuff...for you at this stage you have a higher risk but it’s up to you to decide what ‘high’ risk means to you, what risk you are willing to take…but according to the information we have here it is worth you having the test at your age because you are at increased risk. Midwife 3 I think if its presented to us as GP’s and we are really told pretty much that we have to offer them to patients or we are not giving patients freedom of choice, but it’s presented in such a way that ‘of course you would want this

Consent and Choice: Institutional Constraints

79

test’, and we present it that way, then we don’t really give them a true choice. General Practitioner 2 Essentially it’s as non-directive as we can make it, we give people options of further testing and tell them the available information we have, what we can exclude with certain tests, then we give them the choice…no-one is obliged to do anything…even if we have an abnormal result...no-one is obliged to act upon that result if they don’t want to…however, directive counselling? It depends who the patient talks to really, some people will push a lot more for things than others. Obstetrician.

However, in-line with Schneider’s (1996) observations, physicians also recognised that many patients did indeed seek overt direction, coming to them for interpretation and elucidation of the overwhelming quantity of information that is accessible from various sources, most notably the internet. The following practitioners explained, I don’t think it’s hard at all, in one sense it’s easy to be non-directive, but it’s not a particularly good way to go in medical practice because it’s too much like a shopping mall model, and doctors should be in the business of, not coercing people, but offering some gentle direction on some cases, or at least endorsing what they feel is the best way to proceed in that patients best interest...most people would agree that it’s not that difficult, but people get into habits, and may not be aware that they are being directive. General Practitioner 3 It’s not lack of information that people have a problem with these days… With the internet, there is too much information, so it’s about sifting, interpreting and understanding which is the communication process that takes place in the clinical consultation. So…why do people keep coming with more information? It’s because they need assistance in understanding and interpreting, so I try not to give too much and expect them to take it all away and read it all and act upon it. Clinical Geneticist People come to us for information, but they also come to us for our professional advice…so while I don’t think that we should tell people what they should do…and that’s what used to happen…although in previous generation that’s what some people wanted too…but no…I think people come more for advice…they do have to make their own decision but they do want an opinion from you. And I guess…the other thing with nondirective counselling is…to be totally non-directive you wouldn’t even bring up the fact that there was a test because that’s being directive in itself by offering it…we’ve already…pre-empted it…but I think to be totally non-directive you just end up giving people this whole lot of information and they’re just going to say, ‘well I don’t understand that’...because I

80

Chapter Five think they can’t necessarily think through all that unless perhaps they know someone who has been through it. So, I don’t think that (nondirectiveness) is what people want from us to be honest. General Practitioner 2

While advice may be sought by mothers, problems arose for some when they chose to reject it, as Danielle did when she decided not to accept the offer of amniocentesis after soft markers were identified on ultrasound. Well the doctors at the hospital almost worded it like I was being a petulant mother, the way mothers talk to petulant children…well, that’s the decision you’ve made, and we respect your decision, but you know that’s a choice that you’ve made now and you have to live with that…it’s like we’ve given you this option and you’ve decided not to take it…so it was like I had to say “yes I HAVE decided not to take that option”…they didn’t actually say the words ‘its all your problem now sweetheart”, but that was the attitude. Danielle.

As the mother of a child with Down syndrome, Elizabeth too felt that she encountered blatant presumptions about what her expected course of action should be during her subsequent pregnancy. She explains I was 34 with Rebecca when I first went to the GP, and said I was pregnant again, I had Grace with me, and they had written a few notes down, and I said Grace had a heart defect and she was born with Down syndrome. He immediately started telling me I would be referred for a fetal cardiac scan, he said ‘I want this test, and we need to do a blood test’, and I said, ‘no I’m happy not to have that, they’re not that accurate and I don’t want it. I said to him, we knew about Grace before she was born, so that negates all that discussion, He basically just looked at me and said, ‘well I suppose you know what you are doing then’. Elizabeth

Having rejected the offer of a nuchal screen, Elizabeth was further confronted with the persistent presumption of the sonographer, When I had the 12 week scan, the lady asked was I having a nuchal fold scan, we had Grace with us, and I said ‘no, I’m not interested’. But she went and had a look anyway and said, ‘It looks OK’. I was shocked, because I thought; you didn’t have my permission to do that. That’s not acceptable...but I decided not to make a scene. Elizabeth

Consent and Choice: Institutional Constraints

81

For Penny and her husband, the directive and adversarial nature of their encounter, and the pressure they sensed when declining the offer of further testing caused distress and anger, They said ‘well, really you have to have an amnio’, and Stuart and I had talked about that previously and we had had a miscarriage three years earlier, and were told that our chances of falling pregnant again because of other issues between us were very low, so we said, even if there is a problem, we wouldn’t do anything about it…So we’re sitting there looking at each other, thinking we’re not going to do anything about it and they’re sitting looking at us saying, “Well, you really should have the amnio and that will tell you more definitively if there’s a problem”. And it was like we really had to stand our ground, to say no…We’ve already thought about this, and we don’t want it… (Later in the interview)...I think it just meant that for us we just tended to dig our heels in ...rather than be pressured…it wasn’t that we had more questions, we just said no…no discussion…no matter what you say…we didn’t need more education or information at that stage, we just said no…we’re not doing it…We both just really stuck by that original reaction…but we were more angry at the sonographer and doctor pressuring us…that we were somehow making the wrong decision and weren’t complying with what they thought the ‘right’ decision was…that made us more angry...So we never really revisited whether we should have had the amnio…they did mention that they could put us in touch with a geneticist…And when we refused to have the test they still offered us the opportunity to speak to a geneticist, so almost, it was like - they will convince you that you need to have an amnio, but in a very pleasant way…They were saying well, you need to talk to a geneticist, and we said well, we’re not going to do anything, so what difference does it make? And we refused to do that as well. Penny

Like the women in Stapleton’s (2002) study, many of the mothers in this cohort rarely asked questions in deference to their doctor’s superior knowledge and obvious time constraints, while hierarchal power structures within the medical administration were found to influence the array of options presented (Williams, Alderson, and Farsides 2002; Anderson 1999; Stapleton, Kirkham, and Thomas 2002; Bernhardt et al. 1998). In investigating this concern Bernhardt et al (1998) found that most women she surveyed (75%) felt ‘the right amount’ of time had been devoted to dialogue concerning the purpose and nature of testing (Bernhardt et al. 1998), although most conversations focused only on the physical and administrative practicalities of the test. The possible outcome of termination or descriptions of the disorders being screened for occurred in a minority of cases while debate of any emotional, social or ethical aspects of screening were neglected (Bernhardt et al. 1998; Santhalahti 1999;

82

Chapter Five

Press and Browner 1993). The failure to regard these ‘non technical’ issues as worthy of discussion may further undermine their relevance, sending a cue about their perceived worth that may indirectly silence ethical discussion. This further highlights the problem with a process in which the information that is deemed to be ethically relevant is determined by others, often without consultation or regard for individual patient values. However, it is important to note that practitioners too are subject to overt directives, directives that shape the normative pathways that are ultimately laid out for women. One general practitioner explained: They held an information session for GP’s on a range of antenatal issues and obviously that was one, part of it was to do a big plug for the new screening…it was certainly presented with a great deal of excitement and …you know, they were very pleased to have it (nuchal translucency) available and really, certainly from the fellow who had set it up ( at the hospital), he really expected that everyone would want the test and we needed to tell everyone that it was available. General Practitioner 2

In the face of these powerful professional expectations, which are often couched in the language of legal obligation, acknowledging the overt and covert pressure on practitioners to promote screening forms an important part of the dynamic observed.

Legal Frameworks: Practice and Policy Consequences A further institutional consideration shaping technology use and directing ‘choice’ with regard to what testing is offered and why, is the legal framework under which health care institutions operate. While there may be nothing legally contentious about a woman giving her informed consent to have her foetus screened prenatally, should she choose to undergo a termination in response to what those tests reveal, her actions, and those of her doctors’ fall under legislative control. While termination of pregnancy is unlawful in most states of Australia, lawful ‘therapeutic’ termination can be procured on the grounds of threats to the physical or psychological health of the mother. The presumption that a disability in the foetus is automatically grounds for psychological distress in the mother is firmly entrenched in clinical practice and in various state laws within Australia. However, the nature or severity of any foetal anomaly rarely demands justification, and termination is essentially freely available in all Australian states.

Consent and Choice: Institutional Constraints

83

Generally, there is no evidentiary requirement to substantiate a mother’s claim of psychological distress, and termination is legally defensible on the grounds that it creates emotional anguish in the mother. Through focusing on the mental distress the presence of a disability may create in the mother, the law arguably puts women in the unenviable situation where, if challenged, they must build a legal case for termination, based on their own mental fragility. The compounding affront of having conceived a substandard child, followed by the necessity to defend the termination based on one’s own mental incapacity inhumanely places mothers at the epicentre of this series of accumulating ‘failures’. This situation also places practitioners in the unenviable position of procuring treatment in their patients’ interests while potentially placing themselves in breach of the law, a law which increasingly is out of alignment with actual practice. Further studies suggest that fear of potential litigation rather than genuine patient need may be contributing to strong recommendations to screen given by many doctors (Press and Browner 1997; Stapleton, Kirkham, and Thomas 2002; Williams, Alderson, and Farsides 2002; Anderson 1999), and may represent a form of reassurance sought by medical staff, mindful of avoiding possible lawsuits (Williams, Alderson, and Farsides 2002) . Indeed, the ‘legal grey area of malpractice for not offering tests’ has been identified as a factor in the increasing numbers of women being offered the MSAFP blood test in Canada (Press and Browner 1997). With fear of litigation looming, a mutually reinforcing bond of dependence between specialist and patient is fostered which may effectively stifle full participation of the patient in moral decision making. In-line with the claims made above, many practitioners in this cohort identified the professional legal consequences of not testing as a motivating factor in the increasing number of scans both devised and offered as evidenced by the following comments, I feel…and I think probably the medical defence people would probably say the same; I am negligent if I don’t offer them the test. General Practitioner 2 (I: How much of the pressure to test is driven by the defensive legal position?)

84

Chapter Five That’s 100%...yes...yes…it is …it is…I think you’ll find more and more the defensive legal side weighs very heavily…because if the doctor doesn’t offer, then they may be held accountable …many, many doctors are sued for that…for not offering…there’s a lot of defensive medicine happening…it’s sad to see that it’s gone down that path…even the Caesar rate, they just jump in and do it at the drop of a hat …once upon a time they would give the woman the benefit of the doubt...it’s all defensive medicine now.Midwife 1

Finally, this comment from an obstetrician identified wrongful birth lawsuits as the issue at the heart of the medico-legal drive to screen. Well, there’s two ways to look at that, there’s the medico-legal ...where…pretty much…it only takes one or two lawsuits where people say they weren’t offered an amniocentesis when they should have been and they had a baby with Downs, and even although wrongful birth is something that you can’t really sue for, you can in fact sue for it in a way, so there’s definitely medico-legal pressure on GP’s and obstetricians to offer these things. Obstetrician

Perhaps, however, this is an overstated fear. The reality in Australia is that wrongful life actions have been unsuccessful to date. However, the laws governing discrimination, wrongful life, and termination, present conflicting messages about disability, possibly fuelling the confusion and uncertainty practitioners feel. Recently, two wrongful life claims were rejected in the High Court of Australia on the grounds that there was no substantive evidence that life with a disability was worse than the alternative of non-existence4. Such rulings illustrate the paradoxical nature of laws that reject wrongful life on the grounds that life with disability cannot be proven to be worse than non-existence while supporting the terminations of foetuses with (sometimes minor or no5) disabilities. The continued positioning of termination as a criminal offence places emphasis on cementing a defensive legal justification as opposed to one of exploring the social, moral, and human consequences, without fear of prosecution. Often, the secrecy that flows from such a defensive legal stance, coupled with privatisation and individuation it promotes, inhibits 4

Harriton v Stephens. 2006 High Court of Australia 15; 9th May 2006; Waller v James; Waller v Hoolahan. 2006 High Court of Australia 16; 9th May 2006 5 While termination remains illegal in most states, ‘over 95% of terminations before 15 weeks are for social reason in which the foetus is normal’ (Aldred, Savarirayan, and Savulescu 2003, p.337).

Consent and Choice: Institutional Constraints

85

open reflection as many of these decisions become concealed from the public discourse. As termination rates after an unwelcome diagnosis generally remain above 90%6, the prospect of termination is not a remote possibility. However, the link between termination and amniocentesis is often downplayed in practice. In response to the question of why termination is often not flagged as a potential sequel of amniocentesis one genetic counsellor explained. I don’t think that it’s an omission because that should have been a prior discussion, as to why is someone having the amnio, it’s a risk procedure…and that the expectation is that should an adverse finding such as a chromosomal abnormality be found, it was for the couple to decide. I don’t think it’s sufficient to have an amnio to learn whether or not the baby has a condition so that you can prepare yourself with that information. I: Do think it’s an omission not to flag termination as a possible outcome on that on the form? No... I: Do you think it’s appropriate to assume adequate discussion has taken place prior? Yes… I think it’s too late to have it on the form…it should be done before the decision to have the amnio…what is the purpose of the amnio for you? I: Do you think for some women if that discussion hadn’t taken place, a written re-enforcement of the possibility of termination could be an extra safety net? No…because why would someone seek an amnio…or information…what was she going to do with that information?

While some practitioners were clearly comfortable with omitting the likelihood of an offer of termination, another general practitioner felt less at ease: (I: The consent to amniocentesis form ( in this hospital) doesn’t mention termination as a possible outcome. Do you have any thoughts on that from an informed consent perspective?) I do actually…I think that’s very bad because … the impression that I get is that most doctors that they then talk to, saying they have baby with Down syndrome, would just expect that that’s what they would want do ...we do this test, we get a result and this is how we treat it and make it go away…there’s seems to be unfortunately more and more of that expectation…when I read the medical newspapers and even articles on 6 (Garne 2001; Carothers et al. 1999; Santhalahti 1999; Ford 1999; Erikson 2001; Egan and Borgida 2002).

86

Chapter Five pregnancy screening I think that seems to be the general trend…I think particularly where termination is the expectation they will be hit with afterwards, they need to have that thought put in their heads beforehand that this will be brought up. I think a lot of people are just getting tests done without thinking it through to the next stage…to not bring up the possibility of termination is not good…there’s a lot of things other than Down syndrome that get picked up though amniocentesis, I mean even the ultrasound that they do beforehand will often find babies that may not survive, so there’s lots of other things that can be picked up there…I think they need to have that in their mind before the test. General Practitioner 2.

In many Australian states and territories, laws which regard termination as criminal, and the essentially unrestricted practical access to termination are out of step. The result of this is that barriers to open information flow have arisen, creating a situation in which patients and practitioners must quietly collude. If the purpose of placing termination as a criminal offence was to decrease the number of terminations, there is, as yet, no evidence to suggest that current legislation facilitates this outcome. On the contrary, the two states in Australia, Western Australia and South Australia that have removed termination from the criminal statutes report similar or marginally lower termination rates than Australia generally7 (Straton et al. 2006, p.15). When practice and the law operate out of synchronisation with each other, further consequences such as lack of adequate data collection, under resourcing of counselling services and incomplete consent protocols follow.

Chapter Summary Numerous institutional factors act to constrain the realisation of informed consent in practice. These factors include the routinisation of screening which blurs the voluntary nature of participation and may bypass the ethically critical informing process. In this cohort some practitioners welcomed routinisation and were sceptical about the extent to 7

WA reports 18.2 terminations per 1000 pregnancies compared to 16.7 per 1000 in SA, and an overall estimated figure of 19.7 per 1000 pregnancies within Australia (Grayson, Hargreaves, and Sullivan 2005, p.xv). Perhaps reflecting the disjoined and incomplete way that data is collected in Queensland, and the lack of mandatory reporting the estimated per capita figures are contradictory, reported as between 15.4 and 17.0 (Grayson, Hargreaves, and Sullivan 2005, p.32) . The reality is, however, that as no mandatory reporting requirements exist, the numbers and reasons for termination in Queensland and other states remain impossible to quantify accurately (Pratt, Biggs, and Buckmaster 2004).

Consent and Choice: Institutional Constraints

87

which this minimised or obfuscated voluntariness; yet, many mothers were unaware of their option to opt out. However, the potentially fracturing experience of diagnosing disability in a foetus with the potential view to terminate a pregnancy evokes deep ethical questions. Ultimately these questions must warrant fuller consideration than those afforded by underinformed and routine practice. While the goal of non- directive counselling is professionally valued by many practitioners, the presence of overt and covert counselling was strongly present in the mother stories, reflecting a normative pathway of intervention, prefigured by the presumption of participation. A potentially significant finding highlighted by the accounts offered in this research is the blurred accountability for informing as a consequence of the variety of practitioners that now typically manage each pregnancy. Barriers to communication included practitioner desire to shield patients from worrisome, but potentially remote, outcomes, while for patients, their uncritical and unquestioning acceptance perhaps stifled the necessary dialogue. Additional institutional pressures identified through the participant stories were those of limited time, limited resources, and the ominous legal threat that drives the practice of defensive medicine. The following chapter will consider the social constraints to achieving informed consent.

CHAPTER SIX CONSENT AND CHOICE IN PRENATAL SCREENING: SOCIAL CONSTRAINTS

Social factors constraining the realisation of informed consent in practice include the socially constructed, though often unrealised, expectations of enhanced choice, societal reverence towards science and technology, feelings of blame and culpability experienced by women and practitioners on the birth of a disabled child, the social construction of disability as tragedy, and the acceptance of socially sanctioned cost benefit analysis of screening that promotes the practice as financially responsible. Each of these factors will be considered in more depth.

The Social Construction of Choice The belief that prenatal screening automatically enhances reproductive choices by providing improved knowledge about the foetus, thus enabling more informed decision-making (Cuckle 2001; Baird 1999; Savulescu 2005), seems actively embraced by many parents and doctors alike as unproblematic, or even ‘responsible pregnant behaviour’ (Lippman 1991, p. 28). While such screening is predominantly regarded as a technical or medical event, the background considerations directing our ongoing communal commitment of resources, time, expertise, and funding into supporting widespread screening programs are fundamentally driven by latent social determinants. The questions of why the detection and potential elimination of disability are culturally valued and endorsed are essentially social in nature. Similarly, the type of prenatal screening practices developed and the increasing frequency of their use equally reflect entrenched social values as much as they are evidence of advancing technical capabilities. As it is these often veiled social attitudes and norms that extensively dictate which choices come to be offered and sanctioned, exposing these underlying presumptions is valuable in forming an ethical

90

Chapter Six

appreciation and response to the widespread acceptance and expansion of prenatal screening regimes. The high elective termination rates of 85%-98% for foetuses prenatally diagnosed with some type of physical, chromosomal, or genetic anomaly reflect a strong trend towards the abortion of affected foetuses (Garne 2001; Carothers et al. 1999; Santhalahti 1999; Ford 1999; Erikson 2001; Egan and Borgida 2002), figures which have been uncritically presented as strong evidence of choice enhancement (Cuckle 2001). For parents who have been afforded the additional choice to avert the live birth of a child with a disability, this appears to be the case. However, these same figures sit uncomfortably with others who interpret them as evidence of narrowed options and limited choices representing a lack of perceived alternatives in response to a diagnosis predefined as undesirable (Parens and Asch 2000; Shakespeare 1998; Kenen 1999), as Regina Kenen notes, ‘Once a pregnant woman is presented with a category of conditions predefined as a defect, the social context narrows her perceived options’ (Kenen 1999, para 9).

Progress in the field of genetics has further stretched the boundaries and expectations of ‘choice’, with some academics arguing that if we have the means to gain genetic health information about our children, we have a ‘parental and moral obligation’ to acquire it (Clarkeburn 2000, p.1; Green 1997; Savulescu 2001; Savulescu 2005). However, once such knowledge is known, it cannot be unknown, perhaps creating an impetus to act. Clarkeburn (ibid, p.2) clarifies her (eugenic) interpretation of this parental obligation: ‘The duty to acquire information about the genetic constitution of the foetus must be connected with the duty to act upon that information … In the case of untreatable and non-preventable genetic defects, the only possible benefiting action is termination’

Broader (and perhaps more pertinent) questions of who determines the grey areas of ‘non-preventable’, or at what level the ‘untreatable’ becomes ‘unacceptable’ often remain curiously unarticulated in such accounts. These considerations are further complicated by the considerable lack of agreement within the medical literature on the definition of what constitutes a disability. Obesity, low intelligence, criminality, predisposition to cancer or lack of athleticism (Rothblatt 1997; Duster 2003) are all traits with a genetic component that could be considered debilitating by some,

Consent and Choice: Social Constraints

91

but may not be considered reasonable grounds on which to terminate a foetus or reject an embryo. The seemingly trivial example of non life threatening genetic dental conditions cited by Aldred et al (2003) flags such an example. Attention to these largely cosmetic and fixable conditions may seem like a misplaced vanity in light of the more contentious eugenic implications of prenatal diagnosis, however, Aldred (ibid) and his colleagues advocate open access to Pre-implantation Genetic Diagnosis (PGD) for such conditions, which may cause intense psychological suffering and social exclusion, concluding with the justification that ‘if a couple will only have a finite number of children, it might be considered rational for that couple to choose to have children who start life with the best genetic prospects’ (Aldred, Savarirayan, and Savulescu 2003, p.337). While Aldred and his colleagues present the idea of ‘best genetic prospects’ unproblematically, as though there were some shared understanding of what this means, adopting such malleable and manipulable definitions of disability further obscures the criteria for use of prenatal diagnostic technologies, particularly in a biomedical and social context in which individual choice is seen as valuable, and medical consumerism can shape the wider community agenda. Not only can we regulate when and how many children we have, we may now expect to control or choose the type of child, an expectation endorsed by Leanne who explained, If I’m going to bring up a child for the next 20 years I’ve got a small amount of control and choice what condition its got…so I just can utilise that (technology)…(later in the interview)…but that (Down syndrome) was one thing I could eliminate after all the things you worry about when you’re pregnant, did I drink too much in the beginning, could it be born with a funny heart…well at least I know he doesn’t have that…he doesn’t have Downs. Leanne

As demonstrated earlier, for many of the mothers in this cohort the choice to screen was initially exercised as the unquestioning and trusting acceptance of the routine pathway, reinforcing Lippmann’s description (1999) of a pathway clearly paved long before many realize they are on it. While the notion of individual choice is culturally valued, and the terms ‘choice’ and ‘autonomy’ are liberally scattered through the medical discourse relating to prenatal screening (and other forms of medical intervention), in reality, a person’s ability to exercise truly autonomous choice is restricted, made for many under non – negotiable constraints.

92

Chapter Six

Situated in a web of entrenched social and institutional cultures, frameworks, practices and presumptions of which the person themselves may not even be aware, the exercising of choice is more accurately one of choices from those choices made available, as Anne describes, From my experience I haven’t always been made aware of my choices. It makes me angry a bit because I wonder what other areas of the medical procedures, in terms of being pregnant and having a child are we not given a choice about where we actually do have choice. It raises a whole bunch of questions about other things we should have a choice about. Anne

This view was further echoed by one GP who noted, We’re putting them on an escalator, really we’re putting them on at the bottom and they have to follow it to the top…I don’t believe it’s ‘voluntary’. We might say well, they don’t have to go on and have the amnio, then having that they don’t have to go on and have a termination, but once you’re there in that emotional response, you’re often in a position of no choice, because your alternative is to go through the whole pregnancy terrified, just terrified and I’ve seen people do that. General Practitioner 2

The largely predetermined nature of choice was further evidenced in Mary’s account of testing for her third pregnancy after a traumatic and tumultuous experience of false positive in her second pregnancy 12 months earlier. On being advised to have another nuchal translucency and blood test, Mary expressed reservations to her doctor. She relayed the conversation, I said…‘Do I really have to?’…because I’d seen the same obstetrician for all my (three) pregnancies he said “Well, we need to because of what happened last time…just to rule anything out” so I went with bated breath. (I: Did you feel that you had choice in that?) No …no…not really…no…I felt like it was “You’ve got to go and do this”. Mary

In spite of Mary’s ‘harrowing’ experience during her second pregnancy, she maintained faith in screening and in her physician, her closing comments suggesting that her perceived lack of choice was not the critical source of her distress. Rather it was her lack of understanding about the potential outcomes and options that compounded her distress and bewilderment.

Consent and Choice: Social Constraints

93

(Screening) definitely does (enhance choice)…but I think there needs to be more education about what can happen once you get the result back…because I had no idea…and there was no-one for me to talk to…so yeah…I did choose…I guess I had a choice with every test I had done…and because I trusted what I was told…I went ahead with it…so yes and no…I had a choice not to but…I didn’t at the same time. Mary

Considering the potential, risks of screening such as false positive results from ultrasounds and blood tests, potential miscarriage from amniocentesis and CVS, psychological distress (Goel et al. 1998; Kowalcek et al. 2002; Watson et al. 2003; Liamputtong and Watson 2002) and lack of decisive outcomes for many, the reasons why women participate in prenatal testing in such high numbers are complex and multifaceted. Certainly, routinisation and overt expectations to conform partially explain the high uptake rates while the presumption of enhanced reproductive choice may be a motivating factor for some women. However, as pregnancy progresses naturally for around 97% of women (Ford 1999 ; Baird 1999)resulting in the birth of a healthy baby with no complication or intervention, the reality of enhanced choice to either terminate or gather additional knowledge prior to the birth of a child applies only to the remaining 3%. Tom Shakespeare comments (2005, p.221), ‘Approximately one in twelve adults is disabled. However, only about 1% or 2% of births are affected by disability: most people become disabled through disease or accident in later life, particularly in old age. Disability is a normal fact of life’.

This observation is further reinforced by Baird (1999, p.9) who claims that ‘most neonatal disabilities result from ‘low birth weight, prematurity, viral or bacterial infection, birth trauma or accident’ none of which can be predicted by prenatal screening. However, rather than accepting the reality that disability is indeed a normal fact of life, our commitments are channelled into directing extensive medical expertise and financial resources into identifying this 1%-3% with the normative outcome of termination. This socially endorsed stance thus reflects, and perpetuates, an interpretation of disability as so universally unacceptable and undesirable that the extensive community investment channelled into its ‘prevention’ is unquestionably warranted.

94

Chapter Six

One genetic counsellor explained that, while prenatal screening was not failsafe, ‘consumers’1 definitely wanted ‘certainty and desirability…in their offspring’, continuing to explain, ‘I think people want a healthy baby…because I personally would’. On the other hand, the obstetrician saw prenatal screening as a simple extension to tests that could be performed after birth noting, There are lots of different reasons to chose to have those tests available…because those tests are just an expansion of tests that can be done after a child is born…I think they offer people choices and they are there because people want those choices … so I don’t think its presence is a judgement statement, it’s simply a way of providing the options that some people want to have. Obstetrician

The high elective termination rates observed suggests that many people expect, and are entitled to have, the choice of termination. However, the critical difference, not articulated in the discourse of choice that surrounds the prenatal testing conversation, is that it remains unlawful to euthanize a child when diagnosis of a disabling condition occurs after birth. Thus the imperative to detect any conditions prior to birth, to prevent the ‘tragedy’ of disability, is created2. Further research reveals that the period immediately after receiving an unwelcome diagnosis is frequently characterised by a sense of urgency and impetus to act which further channels choice (Helm, Miranda, and Ched 1998), while Shakespeare (1999, p. 30) concludes in his critique of the rhetoric of choice that, ‘The evidence undermines this rhetoric of free choice…in hundreds of small ways the choice is unfree and the dice are loaded against the birth of disabled children’.

1

Some (not all) practitioners used business language, describing their patients as ‘clients’ or ‘consumers’. The production models of health care that such language portrays is not the specific focus of this research, however, it prefigures a relationship between the patient and health carer as one of contractual obligation, as opposed to a more appropriate one of covenant and care as advocated by Eric Mount (Mount 1990). 2 Advocating that the choice to ‘terminate’ be extended after birth, Utilitarian thinkers such as Helga Kuhse, Peter Singer and others see no moral problem in euthanizing handicapped neonates, arguing that the trip down the birth canal is not morally significant, (see Kuhse and Singer 1985 for example).

Consent and Choice: Social Constraints

95

Within these complex subjective and inter-subjective webs of relationships and perceptions, individual choice is rarely simple and may seem illusory and mocking to some (Bridle 2004).

Trust in the Medical System, Science and Technology Leon Kass (2002, p.33) defines technology as follows, ‘Technology, in its full meaning, is the disposition rationally to order and predict and control everything feasible in order to master fortune, spontaneity, violence and wildness, and leave nothing to chance, all for human benefit’.

When the goals of technology are considered in this light, to reject the promised benefits to humankind could be interpreted as retrograde, illogical and counterintuitive. Hence, a further consideration influencing ‘autonomous’ decision-making is faith and trust in the medical system, science and technology, with technology being identified as delivering solutions to problems while perpetuating the myth of invulnerability (Frank 1995, p.135). As such, technology use in pregnancy care has been viewed as a valuable tool, almost a form of insurance towards producing a healthy child (Kenen, 1996). Lippmann goes further, suggesting that once offered, technology is craved, and hence the ‘need’ to apply it is securely constructed and ingrained (Lippman 1991). To understand the context in which these events occur we must examine the seductive power of science on which medicine is based and acknowledge its prestigious position in Western society (Noble 1999). Science, Chris Newell writes, is paradoxically constructed as simultaneously ‘value neutral yet inherently good’ (Newell 2007, p.66), a stance which fulfils the culturally revered pursuit of objective truth, while also providing the vehicle to deliver on the promise ‘to purify the human species of its physical frailties’ (Noble 1999, p.172). Noble’s (ibid) commentary, positions science as a messianic, salvific, quasi-religious force whose mission is to restore the human species ‘to its original perfection’, and re-establish human dominion over the earth. In daily clinical terms, however, the immediate embrace of technology is more expedient and practical although arguably underpinned by hope in the visions of deliverance articulated by Noble above. The prized notion of an authoritative, unbiased, and objective solution that is readily revealed by the application of a simple test is clearly very appealing as it reduces the

96

Chapter Six

need to consider the more complex and unpredictable human dimensions of a problem. Furthermore, by removing deliberations from the moral to the technical domain, the questions that become admissible for consideration under the scientific paradigm change, being shaped to reflect those for which technology may provide an answer. Consequently medical care is increasingly driven by what parameters technology can measure, although not necessarily what patients want to know (Sherwin 1992). Kass (2002, p.36) further explains, ‘Science becomes not the representation and demonstration of truth, but an art: the art of finding the truth – or, rather, that portion of the truth that lends itself to being artfully found’.

Lindemann-Nelson (2001, p.128) makes further reference to the technologically defined ‘clinically correct story’ noting, ‘the clinically correct story is a narrative of passing because it first represents the person as pathologically abnormal, then offers to repair the pathology’.

While Hilde Lindemann–Nelson’s (ibid) comments above were made in relation to the gender re-assignment of adult transsexuals, the ‘clinically correct story’ may equally apply in the context of prenatal screening which represents certain foetuses as ‘pathologically abnormal’ then offers to ‘repair’ nature’s mistake through ‘medically indicated’ termination. The authoritative standing and relevance of technology is thus perpetuated. The scientific discourse of medicine has predictably, and perhaps of necessity become expert and removed. However, the consequence of this segregation has been that non-expert (patient) contributions may have become undermined, leaving many women feeling uncomfortable and underqualified to participate in such complex technical deliberations. The scientific orientation of medicine, Sherwin (1992) argues, has created a distance between itself and those it practices upon entrenching paternalistic processes with their inherent reluctance to share power. How would an ‘unqualified’ woman who rejects (or even questions) culturally revered technologies be regarded within a context where technology is presented as progressive, desirable and infallible? In this context, questioning the substance of scientific expertise and authority would simply not be an option for many. It is this potential for exclusion that Lippmann (1999a) suggests has encouraged some women to adopt overtly medicalised language to describe their own experiences noting, ‘women

Consent and Choice: Social Constraints

97

may sense that the more they speak the biomedical story (e.g., quote risk figures; go for genetic counselling), the more they will be recognized as rational, intelligent decision makers’ (Lippman 1999a, p.270). This strategy was chosen by one mother in this study, Elizabeth, who couched her refusal to screen in the medicalised language of risk factors, inaccuracies and false positives, a language she felt engendered more respect from practitioners, The reaction of the medical staff is such that if they can tell you’ve read up and you know what you’re talking about, then they give you more respect and more consultation, rather than being spoken down to, I’m not saying I know all the medical terminology, but at least I get spoken to like an equal. But I feel that they should give me all my options, not make assumptions for me, and I have a brain, treat me as such, this is my child, I’m the expert in that. I find that using their language, they give you more respect. Elizabeth

This form of ‘narrative surrender’ as Art Frank (1995, pp.5-6) describes it, is one in which the dominant story that trumps all others is the ‘medical narrative’. He explains ‘the ill person3 not only agrees to follow physical regimens that are prescribed; she also agrees tacitly but with no less implication to tell her story in medical terms’. Thus the authoritative cultural imperialism that scientific pursuits hold becomes entrenched (Lindemann-Nelson 2001). Where the biotechnology revolution is presented as progressive, scientific and rational, to stand in question is to be cast appositionally, as potentially retrogressive, biased, or irrational. Hence, a degree of moral censoriousness surrounds the presumed commitment to the culturally revered pursuit of science. The potential alienation women may feel on rejecting the presumed benefits of such technological imperialism was summarised by Anne who declined an offer of amniocentesis. She explains, I felt misunderstood; I felt that they couldn’t understand why I didn’t want screening especially if there was a potential problem, almost as though I was being irresponsible. I felt that I wasn’t fitting in, that I was bucking the system…that I was almost, a tinge of being irresponsible in that, here we are, we (health care professionals) can prevent these nasty things happening to you as a parent, not considering the child, and we can make your life easier and if you let us, we can take care of this and you can lead a happy life and not have to concern yourself with a child with special needs. It was when I said I didn’t want an amniocentesis, and explained 3

Or in the case of prenatal screening, the mother of the potentially ill child.

98

Chapter Six that I would have this child whether there was something wrong or not …I felt like I wasn’t accepting their help, and they thought I needed their help … I felt they didn’t understand. Anne

Although medicalisation of pregnancy is not the focus of this particular study, this topic featured strongly in the midwives’ reflections. Possibly demonstrating their professional commitment to act as advocates for the women in their care, many midwives held strong views on the unacceptable and increasing levels of technological intervention in antenatal care. They have to go to a professional, maybe a medical officer in order to ‘find out’ if they are pregnant, in order to diagnose that they are pregnant…it’s ludicrous…why don’t women know their own body well enough to say ‘I think I’m pregnant’ so from the very minute you know you’re pregnant, it’s medicalised…after that you have to have a scan to see if the baby is alright, or the gender of the baby…woe betide if you bought white clothes! You’d have to know whether to have blue or pink. Midwife 4. Women who spend a fortune using IVF to get pregnant are often so far the other way in engaging technology that they can’t think for themselves without asking what would the obstetrician do, or the gynaecologists do? Midwife 2 Well…childbirth is highly medicalised now...and I think too much so...I think the natural enjoyment of pregnancy and childbirth has lost its spontaneity…I think even the mothers who come in for a scan…they come back and say can I have a photo of my baby, I have to keep an album…it seems to be the most important thing…it seems they are almost reliant on technology to get through the pregnancy…it’s almost like ...this scan or this doctor will tell me exactly what’s happening…this doctor is going to tell me exactly what’s going on…Once upon a time there was the obstetrician and the mother, now you have the obstetrician and the subspecialty in maternal and foetal medicine…where we have more and more doctors training in the abnormality side of pregnancy…and that seems to be the up and coming specialty these days…and so...everything seems to be centred around scanning, Doppler’s, foetal growth and the most minor little thing becomes a major thing…so the women wondering how much has the baby’s brain grown, is it’s brain still OK, it hasn’t put on that much weight so they go away and think about that, so women become conditioned to rely on that technology… It seems to be...seems to be…that every detail is a point to be managed. Midwife 1

The power of medicine, and thus women’s dependency on it lies in the expert and exclusive ability to interpret the elite and complex scientific

Consent and Choice: Social Constraints

99

world from the vantage point of the ‘specialist’. Subsequently, many women, such as Anne, find that their ‘non-expert’ contribution is rejected and their confidence undermined, leaving many feeling inadequate and underqualified to participate in such authoritative deliberations. Consequently, many women simply have to ‘trust’ that their practitioners are giving good advice, a trust acknowledged by the obstetrician who noted: Most go in assuming everything we do has a purpose and they believe in that purpose …and are very, very trusting. I mean you can go along and do any number of blood tests and very few people will question what you are doing. I think they express a general trust in the system to do the right thing by them…the problem is that they don’t understand the dynamics of testing. Obstetrician

Most women in this cohort, with the exception of Terri, trusted at least one of their doctors. This was articulated by Mary, who spoke about her obstetrician with respect and gratitude, He’s the one who’ll make you get through this...you have to trust their judgement at some stage…which is sometimes hard but I do trust him …he’s very good . All the others were…I don’t know...just there doing a job…but he was the one who made everything real and put things in perspective. I didn’t listen to them… (other health professionals), I just went straight to the one person I knew I can trust…I’d just ring him up and say I’ve been told this and he’s say “Oh that’s stupid, that’s crap don’t listen to that, I’ve got your results here you’re fine”. I went to the one person I knew I could trust and I had specialists bombarding me. I went straight to the one person I knew I could talk to and I knew I could trust…I was very lucky to have that. Mary

Interestingly, Mary did not reflect upon how the trauma of the false positive screen that she needed to ‘get through’ had eventuated in the first place. During her subsequent pregnancy just over 12 months later, Mary’s obstetrician revealed that the previous false positive which resulted in 12 ultrasounds, an amniocentesis and almost eight weeks of intense psychological turmoil was probably a consequence of residual hormone levels from an earlier miscarriage, a potential explanation not disclosed with the initial result. Most practitioners in this cohort were acutely aware of, and deeply humbled by, the degree of trust placed in them by their patients, speaking respectfully about the mantle of trust they carried.

100

Chapter Six

They are looking for reputable sources of quality information that’s something they can trust, so there is need to have some sort of authority about what you speak … I guess that comes from being in the hospital, or position as a doctor, the fact that you’ve been referred to see this person by other specialists, so they think you must know what you’re talking about. That places you (as a specialist) in a position that provides legitimacy to what you tell them, but… establishing that rapport is probably an important aspect of developing that trust...I mean...It’s probably a very important aspect, I guess, why should they believe you? Clinical Geneticist

While trust in technology may be a motivating factor to embrace screening, lack of trust can equally shape interpretation of results, as one genetic counsellor noted: I think they are more willing to trust it when it gives them good results…people who haven’t been very trustworthy of nuchal results are where the nuchal might be OK but the bloods are high, the result is a bit wishy washy…they try to find excuses for why that results might be askew…I’ve had morning sickness, and I’ve had some Panadol, they come up with all these different reasons why the test is wrong…When it’s a bad result…Occasionally, there are cases where someone has entered the due date wrong for the bloods or maybe haven’t been thorough with the mum’s weight, and that can dramatically change the result…so when people get one result and we have to phone them with the new result. They don’t trust us then. Genetic Counsellor 2

Demonstrating the scepticism referred to above, Penny did not trust the initial nuchal translucency result she was given, a lack of trust that was justified when she was later informed that poor calibration of the instrumentation used to analyse her blood tests now meant she fell in the ‘normal’ range and there was actually no increased cause for concern. She explains, I was so concerned about making sure they understood about the 40 day cycle which could throw out the result, I made everyone write it down, and again at the post scan where they were saying our risk was so high, I was reiterating, have you made sure you note this long cycle was taken into account, I really didn’t trust that they had got it correct….and a couple of weeks later they rang and said…we’ve recalculated your result and it now falls in to the normal range…and apparently the machine had not been calibrated correctly…And I just thought, well thank goodness we didn’t go ahead and have an amnio…at that time…We felt pressured but we thought thank goodness we didn’t bow to that pressure. Penny.

Consent and Choice: Social Constraints

101

The dominant story, however, is one of automatic trust in science, a socially sanctioned trust in technology and medicine which significantly conditions the acceptance of technological intervention as necessarily good.

Responsibility and Blame While there may be different expectations of mothering in different social contexts, a consistent theme is that women, more so than men, are responsible for their children’s well being (Lindemann-Nelson 2001, p.136; Rapp 2000). In commenting on mothering responsibilities during pregnancy Kathryn Pauly Morgan (1998, p.94) remarks, ‘Women are increasingly targeted for surveillance - largely as reproductively defined, instrumentally valuable ‘vessels’ or ‘vectors’. The medical surveillance of pregnant women occurs not simply in the physician’s offices but on the street, in restaurants, in public settings, and in the privacy of familial settings when medicalised norms of ‘responsible pregnancy’ are used judgmentally to evaluate and criticise the behaviour of pregnant women particularly with respect to alcohol and tobacco use’.

Expectations of ‘responsible pregnant behaviour’ dictate that good mothers engage in risk-lowering behaviours to ensure their child’s safety (Lippman 1991, 1999). Such behaviours range from the innocuous abstaining from soft cheese, to the potentially harmful forms of prenatal screening such as CVS or amniocentesis with their attendant risk of miscarriage (ibid.). Press and Browner (1995, p.153) further claim that women want to be seen to be behaving responsibly, hence, ‘adherence to routines of scientifically based prenatal care…is women’s only culturally approved means of reassuring themselves and others that they are doing “all that can be done” to ensure a healthy pregnancy’.

Markens et al’s comment that women accept screening because it is presented as ‘the medically and maternally responsible course of action’ (1999, p.362), further recognises the societal pressures placed upon pregnant women to ensure the good health of the next generation. More recent health trends have extended the medical surveillance of pregnancy to ‘preconception’ and ‘internatal’ care (Lu et al. 2006), care before and between pregnancies, further extending women’s status in medicine as reproductive ‘vessels’ (Faden, Kass, and McGraw 1996). The explosion of preconception advice and websites bears testimony to the intense level

102

Chapter Six

of interest, control, and management of pregnancy, marking the expansion of the medicalisation and regulation of the female body, an extension to the existing intrusion and regulation that has been widely critiqued in the feminist literature. Perceived pressure to do the socially ‘responsible’ thing loomed largely for respondents in Helm et al’s (1998) study exploring women’s experiences in responding to a prenatal diagnosis of Down syndrome. Feelings of immense pressure from family and friends to terminate an affected foetus within the often-restricted time frame between a diagnosis and the medically preferred gestational limit for termination of 20 weeks were also noted. The perceived time pressure limited opportunity for reflection, assimilation of information or understanding of alternatives, all considerations that may undermine the exercising of informed consent. As previously claimed, exercising ‘choice’ in these circumstances incorporates more than a simple, rational decision but is clearly constrained by the deeply related, embedded, and multifactorial contexts in which such interdependent choices are made. Indeed, Wertz (1992, p.498) acknowledges social coercion as a significant factor, saying ‘the problem of informal social coercion is real and must be addressed along with problems of formal legal coercion’. While none of the participants in this cohort raised ‘responsibility and blame’ as significant areas of concern, researchers elsewhere have revealed that many women identify themselves as advocates for their child’s health and therefore take responsibility to act towards ensuring their child’s best interests (Lippman 1999). As a consequence of this enduring sense of responsibility, women have often felt culpable and blamed by society if their decision not to co-operate in prenatal screening regimes has led to the ‘negative outcome’ of an undetected disabled child (Marteau and Drake 1995, p. 1128). Hubbard (1988, p.232) further reiterates this point saying, ‘If a test is available and a pregnant woman doesn’t use it, or completes the pregnancy although she has been told that her child will have a disability, the child’s disability is no longer an act of fate. She is now responsible; it has become her fault’.

However, mothers’ self-blame is only one of the many potential sources of pressure to conform to screening regimes. In their 1995 study, Marteau and Drake elicited responses from medical staff, pregnant women, and the general population to two case vignettes about prenatal

Consent and Choice: Social Constraints

103

screening decisions. In one case, a mother rejected prenatal screening and gave birth to a child with Down syndrome, while in the other, no offer to screen was given and a child with Down syndrome was also born. In assessing these fictitious cases, the respondents attributed more blame to the mother who rejected screening, leading Marteau and Drake (1995) to conclude that the perceived ‘preventability’ of the outcome produced higher attributions of blame to the mother, both from medical staff and the general population. Psychologists identify that attempts to make meaning in the face of unexpected bad news or illness often lead to attributions of blame. If a person is deemed to be experiencing something beyond their control, caused by external factors, research suggests that they are more likely to be supported by medical staff and less blamed4. The attributions identified above by Marteau and Drake (1995) may impact upon how medical staff relate to, and care for, patients if there is a perception that patients are culpable in creating their own poor prognosis, or that they have rejected the medically proposed ‘benefiting’ action. This is an important point when considering the amount of support women may receive during the critical period immediately following the diagnosis, or potential diagnosis, of a disabling condition in their child. Danielle’s earlier assessment of her doctors attitude that ‘it’s all your problem now sweetheart’, or Anne’s perception that she was being cast as ‘irresponsible’ provide pertinent examples of the practitioner attributions of blame that Marteau and Drake (1995) allude to. In responding to others’ curiosity about whether blame could be apportioned, Elizabeth, whose older daughter Grace has Down syndrome, talked about the presumptions that others held when broaching the question of whether she ‘knew’ about Grace’s condition before birth.

4

For fuller discussion and relevant psychology references see Marteau and Drake, 1995, p.1127. Attributions of blame also permeate medical discussion of more recent ethical controversies surrounding the refusal to treat patients who are smokers (Peters, Morgan, and Gluch 2004) or the UK government recent decision to exclude obese women from access to publicly funded IVF programs (Lynch 2007). While there are additional medical considerations when operating on smokers such as increased recovery time from surgery, and higher likelihood of complication, as Tonti –Fillipini (Tonti -Filippini 2004) cautions, such action may be discriminatory as it may unfairly target marginalised groups in society such as the mentally ill, who are twice as likely to be smokers.

104

Chapter Six Lots of people ask us if we knew before Grace was born, and I just say ‘Yes’, because the next obvious comment is poor you, you’ve been saddled with this child and you didn’t know…So being pregnant with Rebecca was interesting because some people assumed that we would want to know, it mustn’t happen again…it makes me cross…if I just say I knew, it shuts down the conversation…I remember a really good friend who was mortified that we would even consider having another child after Grace, I said to her what do you mean, and she said, ‘you know’, and I said ‘no…. why?’ Of course I knew exactly, but I wanted to make her say it. Elizabeth

Even though Elizabeth felt no blame, had been advised of her daughter’s probable condition before birth, had firmly rejected the offer of confirmation through amniocentesis, and vigorously defended her daughter’s worth, value and right to be born, she was still confronted on a regular basis by others’ prejudices and presumptions of what she ‘ought’ to have done, and the steps to prevent the travesty of another disabled child being repeated in her subsequent pregnancy. However, blame and responsibility did not rest with mothers alone. Blame was keenly felt by practitioners who similarly expressed feelings of responsibility when an undetected child was born, as Penny’s doctor did. Although Penny had been offered amniocentesis and steadfastly refused due to concerns about the possibility of miscarriage, her daughter was subsequently born with a rare genetic disorder, one which would not have been detected by routine amniocentesis. Penny recounted the conversation with her doctor following the diagnosis which conveyed his sense of regret and accountability. Thinking about it, the obstetrician was very…apologetic…when we went back for the 6 week check up…he said, I’m sorry you’ve been in hospital for so long, waiting for these tests, if there is anything I can do….after we got the result back…He must have rung…and he said “I’m very sorry that’s come back with (x) Syndrome…there was nothing through the pregnancy that would have indicated a problem”…and it was like he had a sense of, he wished he had picked it up…because now you’re stuck with that…I don’t really know, he may have genuinely been sorry…but because we are a little bit cynical, we were like; he’s just covering himself. Penny.

Finally, even when ostensibly there was no blame to be apportioned, the following comment highlights that physicians keenly felt the brunt of the unpredictable and inexplicable outcomes, outcomes that are an inevitable part of the human condition.

Consent and Choice: Social Constraints

105

I think finding blame...expecting the perfect baby and not getting it, the consequence of that is anger…that they did all the right things, ate all the right foods, so someone must have done something wrong, I guess that’s an outcome of promoting the idea...that if you do all the right things and have all the right tests, then you will get this outcome, it makes people less accepting that bad things happen, and sometimes they happen to nice people…it doesn’t prepare people…they can’t accept the outcome and they feel there has to be a reason for everything. General Practitioner 2

Poor Understanding of Disability ‘Disability tends to be associated with tragic loss, weakness, passivity, dependency, helplessness, shame and global incompetence. In societies where Western science and medicine are powerful culturally, and where their promise to control nature is still widely believed, people with disabilities are constant reminders of the failures of that promise, and of the inability of science to protect everyone from illness, disability and death. They are the ‘others’ that science would like to forget’ (Wendell, 1996 cited by Pauly Morgan 1998, p.94).

Prevention of the presumed pain, anxiety, stress, and suffering of the disabled and their carers is often cited as a positive outcome of early termination of a foetus carrying a disability (Baird 1999; Clarkeburn 2000; Anderson 1999). As many disabilities, especially genetically linked ones, cannot be cured, conventional medical wisdom dictates that they must be prevented. As flagged before, Clarkeburn (2000) goes further, claiming that the prevention of pain and suffering is not simply an optional benefit of screening, but rather ‘prevent(ing) a child being born whose life would be worse than non-existence’ is indeed ‘a parental and moral obligation’ (ibid., p. 401). While the argument that life is worse than death for the severely disabled is disputed as a socially constructed interpretation, entrenched by the portrayal of disability as an unrelenting tragedy (Reinders 2000; Parens and Asch 2000; Asch and Wasserman 2005), it is nonetheless a message that many pregnant women seem to have received (Lippman 1991, p. 23). This message is further entrenched by the visible and experienced lack of support in the community, confirming the difficulties of living with disability (Williams, Alderson, and Farsides 2002). Tom Shakespeare (1999, p.29) further laments the pervasive influence of such attitudes on the directions and implementation of research policy and practice saying,

106

Chapter Six ‘An outdated attitude that impairment equals tragedy and that disabled lives are not worth living permeates the clinical literature and informs the research policy on genetics.’

In their critique of prenatal diagnosis, Parens and Asch (2000) expand upon the themes above. They assert that not only is prenatal screening morally problematic because if its role in entrenching discriminatory and prejudiced attitudes towards people with disabilities, but additionally, it contributes to negative community attitudes through the perpetuation of misinformation about the lived experience of disability. They further claim that prenatal screening potentially undermines the character of the parentchild relationship, making it contingent upon the quality of the child, while also eroding communal acceptance and tolerance of diversity and inclusion. Parens and Asch (1999) further contest the normative representations of disability in which they claim the negative aspects of living with a disability are unfairly accentuated. Hilde Lindemann–Nelson (2001, p.82) offers some insight into the damage to identity that such biased representations may cause saying, ‘Just as we construct self-constituting stories around the aspects of our selves and our lives we care most about, so others construct identity constituting stories around aspects of our lives that they care most about. Sometimes these stories centre on the same features that we care about too, and sometimes they don’t. And sometimes these others interpret a feature of our lives very differently from the way we interpret it, which is to say they construct a different story, with different plots and from different points of view around that feature’.

Within this cohort of mothers, Leanne’s attitude was most heavily influenced by negative perceptions of what life with a disabled child would entail. Based on her knowledge of a work colleague, whose daughter had Down syndrome, Leanne interpreted her colleague’s life as one of ongoing stress and hardship, directly stemming from the disability in her child. She explained Knowing my colleague and her family, she has a son 3 years older than her daughter now, to see how it has affected their life and knowing that little girl. (I: Do you perceive that as a negative experience?) Oh God No!! No! Not negative, realistic! If I hadn’t known her I wouldn’t have had it, but by knowing that one in a blue moon, by knowing that one, it’s not some textbook side paragraph, it’s…She was the one, so by

Consent and Choice: Social Constraints

107

knowing that one, that was my decision made, I’m having it because I could also be that one, and if I was that one I knew what to do. Leanne.

However, when questioned about the particular hardships involved in raising a child with a disability, Leanne’s answer revealed little detail, other than the assertion that she was not confident that she would get adequate support from others to cope with the additional, though unspecified, burdens. (I: If you were motivated by the experience of your colleague in parenting a child with a disability, what is it about your colleague’s experience and life with her child that makes it so undesirable to you, that you would take steps to prevent that?) I think we hadn’t tried for a baby for long, the first time we tried we conceived so I felt lucky in that I was fertile, I knew there were no problems ‘down there’ (laughs), so I felt well, I haven’t got the strength of character to bring up a disabled child and seeing what she has to do to bring her up and the support that she needs, I have no family here whatsoever, got no support, nothing just me and my husband. It’s hard enough to bring up a child with no disability, but with no-one to support us...So that, in conjunction with the knowledge that we haven’t been trying for a kid for two years, we conceived first time, so I thought well… (hesitates) I would have terminated if I knew it was Down syndrome. Leanne

Even though Leanne acknowledged her colleague’s acceptance and love of her child, she firmly dismissed the idea that it would ever be acceptable for her to mother a child with Down syndrome. In the beginning (of the pregnancy) in the first few weeks I asked her what had happened to her and she was quite upfront and didn’t mind telling ...but I didn’t want to get into how she was feeling now, I just wanted to know the facts leading up to the birth…and she said how she was in shock and didn’t want the child and tried to run away… But that was in her shock and now she has this daughter who had Downs and that’s how it is. I did tell her that I was having amnio, and she said, well what will you do if the baby does have Downs? Obviously she has the point of view that her daughter has Downs so she wouldn’t think about abortion, because that’s her daughter. I didn’t say it (that I would abort), when I could see where the conversation was going I changed the focus of the conversation, but she knew me she knew my attitudes, but, no, I didn’t spell it out in black and white, because we’re friends. I mean you don’t tell someone who has disabled child that you would have a test to make sure your unborn child doesn’t have what they got…You’re not going to say that to a mother are

108

Chapter Six you?...(later in the interview)…We’re quite close knit at work, and she is very career minded and we all…all of us tend to think she does a lot of unnecessary work to get out of the house…because it is so hard at home...and we all tend to think that as well, basically because she can go out the house, and leave all the stresses...I’ve never asked her in so many terms (if she has difficulty coping with her daughter) but…I would imagine. Leanne

The contradictory nature of Leanne’s account, explaining her relationship with her colleague as ‘close’ while persistently evading, and making unsubstantiated presumptions about the daily difficulties her friend encountered served to entrench Leanne’s predetermined schema which equated life with a disability to unrelenting hardship. Leanne’s determined unwillingness or inability to question her firmly held, pre-existing belief that Down syndrome would never be acceptable in her family was disquieting. It also contradicts claims made by some disability rights advocates (Ferguson, Gartner, and Lipsky 2000; Parens and Asch 2000; Biesecker and Hamby 2000) who have noted that personal contact and knowledge of a person with a disability often dispels many misunderstandings and has been associated with decreased acceptance of termination following prenatal diagnosis. As a visible and recognisable disability, Down syndrome was often singled out for specific attention by mothers and practitioners, as evidenced in the following reflections, I guess there’s a focus on Downs because it’s because it’s a survivable chromosomal condition, the others usually result in miscarriage or still birth, or a baby that survives a few hours or a few weeks, but no longer. So back in the days when they instituted screening, the other abnormalities weren’t considered a significant group to look for because they are going to die anyway and they wont cost us anything...people don’t talk about that as much either. Children with Down syndrome are present in our communities, they are visible and it’s got this kind of focus that people have because it is a baby with a visible problem that is incurable and has a definite feature about it…that’s recognisable…I think that’s why...but if you look at the eugenics of it all, the reason it was actually created and why anyone even screens from a medical perspective it was because we were trying to reduce the live birth rate of Down syndrome because Down syndrome children costs us money. So there is the public perception of Down syndrome being one of the few recognisable, versus the medical profession which is actually all about money…not everyone in the medical profession saw it like that…many saw it as allowing people to have the

Consent and Choice: Social Constraints

109

opportunity to make pregnancy choices and providing information, but really it started out as a money thing. Obstetrician.

Relaying the story of watching a young man with Down syndrome on the bus going to work each morning, one genetic counsellor struggled to reconcile the apparently unthreatening normalcy of this young man’s life, to the starkly contrasting anxiety and perceptions of danger, risk and undesirability held by many pregnant women she counselled through the day. She explained: It’s concerning that they’re all anxious about Down syndrome but they don’t actually know what it is…I think for a lot of people... it’s almost like anyone with a disability is under that label of Down syndrome…any intellectual impairment….it falls under that umbrella…but the fear…I don’t know…where that comes from…(Later in the interview)...there are times when I sit back and think, this focus on Down syndrome just kills me…I guess because when you put it in perspective its just one thing and there’s a whole spectrum of other things that could be wrong with a baby that may not be known until the baby develops. Maybe it’s autism, maybe it’s cerebral palsy, goodness knows what…So that focus on Down syndrome is challenging for me…there’s no doubt about that and I’ve talked about it with my supervisors and things…particularly when I come to work on the bus and I see this 20 yr old guy with Down syndrome looking like he’s going off to work you know and I look at him and I think …oh…what are we doing? It feels really harsh and it’s so pointed…that it’s at Down syndrome, and I don’t know how I reconcile that in my head…Somehow I’ve done it…up until now…But I do find that really challenging. Genetic Counsellor 2.

She continued noting: Sometimes people really just shock me with their reaction...usually you get the “oh no…we couldn’t have a child with Down syndrome” lots of phrases you get used to hearing I guess, like “I don’t want to sound cruel but…”, or “I just couldn’t bring someone like that into the world” …Things that make you wonder where they come from...And they’re not specific, for the vast majority, it’s not a specific experience that makes people think that way…It’s just society…That makes people think that way…what’s in their family…you know.Genetic Counsellor 2

Fear of disability and abnormality lie at the core of the attitudes expressed. Understanding how such schemata of normality emerge, Lindemann- Nelson (2001, p.111) extrapolates from Marion Iris Young’s (1990, p.59) account of ‘cultural imperialism’ to suggest how the

110

Chapter Six

dominant discourses of ‘normal’ have come to be perpetuated and entrenched in our collective understandings. She explains, ‘The dominant group takes its own experiences, achievements and values to be representative of human nature per se. To the extent that other groups differ from it, then those groups must consist of defective human beings. It’s often habitual and unconscious fears and aversions that drive people in the dominant culture to identify subgroups as deviant rather than merely different, but an element of moral censoriousness regarding people who do not conform to the norms of the dominant group can also be present in the identities that are constructed through cultural imperialism. In identifying those outside the dominant group as deficient or defective, the group affirms its own sense of who it is’.

Thus deviance, not difference, demarcates and defines the social discourse of disability, and the quest for normalcy in reproduction promotes the intense surveillance of pregnancy even when the methods used are incomplete and potentially harmful. The quest for normalcy was identified by several practitioners as a significant factor shaping the behaviours adopted by physicians and parents alike: We don’t really handle abnormality very well…our society is very geared towards normality…and I think that those things matter most. From a medical point of view we are trying to pick up the serious things first…to make sure everything is OK…I don’t think there is any education in terms of what Down syndrome is though…I think we offer screening…but when you in fact ask people do you know anything about Down syndrome, that’s actually the thing they are not well educated about…They don’t have much knowledge about what it is they think we’re screening for. Obstetrician Normality is very important to us when we talk about reproducing a human being…In birthing a baby, normality is very important…they need to have the correct numbers of toes and fingers and ears in the right position although that’s not as noticeable as the digits… And yet…normality of the process of the event of birth is not hugely important. It’s the normality of the product and I think that has a huge meaning because it reflects on the genetic normality of the parents involved and their parents and the whole family really, so abnormality is to be avoided at all cost and abnormality is almost something to be ashamed of so technology is one way that we can, to use business terms ‘insure’ ourselves against that a little bit. Midwife 4

One GP felt that by offering more and more testing the medical profession had colluded in generating and perpetuating the false

Consent and Choice: Social Constraints

111

expectations prenatal screening potentially generated, expectations which ultimately could skew parental outlooks. I’d rather we changed the mindset of the couple, the medical profession are going along with this idea of the ‘perfect baby’...there are no perfect babies…mean your child may be diagnosed with autism at 2 years old, that can be far more devastating than Down syndrome, I think…far more devastating, certainly as devastating. One of the fears with Downs, apart from its prevalence, is the intellectual impairment, I think people fear that…if it’s something like Cystic Fibrosis, people deal with that better because there’s no intellectual impairment, although ultimately the child will die, but yes…I think we’ve planted the idea that the more we offer screening and options for women not to have an imperfect baby, the more we reinforce the idea that they should expect a perfect baby...and there’s no doubt that that’s behind the litigation of obstetricians for every CP (cerebral palsy) child that’s born. General Practitioner 2

Yet negative assumptions of what it means to be disabled or abnormal are strongly entrenched within the discursive language of screening. Use of potentially prejudiced language such as burden, risk, prevention, coping, or adjusting to disability, all imbue a message of unremitting hardship (Clapton 2003, 2004; Reinders 2000). Similarly, adopting the language of ‘medically’ indicated intervention may further perpetuate the non-acceptance of disability while positioning the ensuing discussion as one of technical or biological importance while simultaneously silencing the social, personal, and ethical. Language, therefore, has the potential to narrow and perhaps even trivialise the terms of deliberation, as this GP suggested: I guess that’s one of my dilemmas with the whole way it is presented, even when I read the medical stuff, I have seen it written, and I don’t recall if it was a journal article or letter to the editor, it is described as “preventing” Down syndrome…And it’s clearly not ‘preventing’…it’s clearly not ‘prevention’ at all. Its preventing a live birth of a baby with Down syndrome. It’s not prevention of Down syndrome at all and I think that’s strong terminology in medical circles, but if that term gets out into society at large, I guess inevitably it will do….you know, ‘I want a test to prevent Down syndrome’…I think their would be many doctors who would never correct that terminology…I think that’s shocking…everybody that is ultimately faced with that decision after amnio…I don’t think any of them take it lightly, so it’s not as if it’s a flippant thing, ‘oh we’ll just get rid of the baby’...it’s heart wrenching for all of them, so use of the word ‘prevention’ trivialises the child, it also trivialises the decision for them to and it’s just not true…it’s just not true. General Practitioner 2

112

Chapter Six

Given that much of the pain, anxiety, and stress experienced by people with disabilities and their carers stems directly from lack of social and governmental support, not from the disability per se (Ferguson, Gartner, and Lipsky 2000; Shakespeare 2001), many parents of children with disabilities feel it is unreasonable to judge quality of life based on a social norm in which the disabled are under-resourced and misrepresented. As this obstetrician predicted, if adequate societal support was forthcoming, medicine could function very differently in regards to what practices were endorsed with respect to disability. In an ideal world if everyone was guaranteed adequate respite, adequate care, free medical care, free support and a community that always stood by them, so that when they died they knew that their child would be looked after, we would have a very different way of approaching this. I think it is very much an example of a community that is fractured compared to how it used to be…we don’t have extended families; we cannot guarantee that a child’s brothers or sisters when they get older would not look after that person. There are no extended families to offer support and frankly, Australia’s support systems aren’t too bad but they’re not fantastic when it comes to respite care for people looking after kids with special needs, they are really pathetic so I think that aspect is the main reason why older women choose to have termination…They are frightened of being 80 and still looking after a 40 year old with Down syndrome and then worrying about what will happen when they die...and they don’t want to put the burden onto their other children. Obstetrician

However, as this genetic counsellor realised with some resignation, There are people who have the blinkers on and no matter what we say they just have that construct that was in their head…a lot of people say…oh society is so cruel…to people who are different…and…they tend to have, I think a lot of generalisations on how people with disabilities are and what type of life they might have, or lead, whether that’s far, far from the truth or not?...Sometimes it probably is…and some may have views from a few decades ago in terms of the type of living environment for a person with a disability…I guess…so I see my role as giving them a ‘now’ perspective I guess, on people with disabilities…about education and living and work opportunities and that there is really good support from the government and private sector and…I try to do that to give some balance…but it’s just me talking against their values…wherever they’ve pulled that from…I’d be surprised if it ever really helped…but I feel it’s my place to at least try to make that comment. Genetic Counsellor 2

Consent and Choice: Social Constraints

113

Further compounding negative social attitudes to disability is the increasing discourse towards self-reliance (Reinders 2000), entrenching feelings of failure and fear experienced by some women on the birth of an imperfect child. Social policy shift in recent years now lays the ‘burden of care’ squarely in the hands of individuals and out of the hands of institutions. The option to access institutional care, or respite care, for a severely impaired child is therefore becoming more difficult to achieve. This stark reality confronting parents confirms the difficulties of accommodating disability in a society that seems measured in its support. However, the need to construct a meaningful role and place for people living with impairments is crucial in changing the social prejudices observed, as James Lindemann- Nelson suggests ‘the proper response to this concern may have little directly to do with reproductive decision making and a great deal to do with how people with disabilities are incorporated into social life’ (Lindemann-Nelson 2001, p.12), a view echoed by the clinical geneticist who observed, I still think generally there is a lot of sympathy for people whose children do have health problems….and there’s not yet anyone who’s making those decisions because they had no other options available to them. It’s a complex area because...I always remember a couple whose child had Down syndrome…Their view was that…as a community...they saw fewer and fewer opportunities for this person to have economic employment, because there aren’t as many unskilled jobs in the workforce as there was once. They just didn’t see that there was a way for an economic future for that individual, who was intellectually handicapped, so that’s a big challenge for the community…to have productive and meaningful roles for people particularly the intellectually handicapped. Clinical Geneticist

The ‘Preventable’ Cost of Disability – Cost//Benefit Analysis An additional form of social pressure to screen with a view to terminate is the recurrent message that the health care costs incurred in caring for the disabled may be prevented by utilising prenatal screening (Cuckle 1995, 2001; Caughey 2005; Biggio et al. 2004; Harris 2004). Based on utilitarian justifications of the moral imperative to conserve public funds, such discourse may exert further pressure on pregnant women to view termination as a socially responsible act. Indeed Williams et al. (2002, p.749) revealed that some respondents in their 2002 study uncritically viewed screening as an ‘economic solution to the problem of disability’. That government and health care institutions should embrace

114

Chapter Six

policies that overtly sanctioned termination of foetuses with disabilities through the provision of generous medical rebates seemed plausible to Leanne who explained, When, I got the invoice for the amnio and the consultation, it was almost $500, Medicare gave me back almost all, except about $20, there was hardly any gap at all, so they gave back half the consultation and nearly all of the amnio, and I thought Medicare doesn’t normally give out that much, maybe you should find out the exact figures5, because obviously the government doesn’t want a Down syndrome child in society, because they are expensive...So of course they are going to give you most of the money back, because they don’t want them in society because they’re expensive. (I: Research shows that around 90% of babies with Down syndrome are aborted, do you have any thoughts about that?) Well, I’d say…well on that 10% for not, but…If I asked my colleague if she knew in advance would she terminate, I’m sure she would say of course not, because she wouldn’t give up the love of her child that she’s known for 7 years, but I’m sure she would have liked to have known…but I was very surprised to get all that money back, and I thought, well the reason must be because they’re an expense to society, and that’s a message that the health care is sending…but for me I would have had it anyway regardless of the cost. Leanne

While Leanne was fully in agreement with this perceived (though false) explanation of government collusion, Danielle remained more circumspect, I imagine it’s probably a push from the government, I mean we don’t have the funds that we need to support these children and adults…and all the other mental health and other issues…if we could just weed a few of these out it would be helpful...part of me thinks that it wouldn’t surprise me in the slightest to find the government had been strongly advising women to terminate…I’m a bit sceptical really…I don’t have a lot of faith in those systems generally. Danielle

Shakespeare (1999, p.31) strongly cautions against the insidious validation of prenatal screening regimes on the basis of an overall positive cost/benefit analysis, claiming that such justifications overstate the true ‘cost’ of being disabled, while understating the fundamental reality that

5

The Medicare rebate for amniocentesis (Item number 16600) was 75% of the scheduled fee at this time, which is no higher than the rebate for most other medical services.

Consent and Choice: Social Constraints

115

the human condition is ultimately one of frailty in which disability may become a feature of any person’s life. He explains, ‘Equally, there is a pernicious tendency to develop screening policies on the grounds of cost-benefit models. These arguments balance the cost of detecting and terminating affected pregnancies with the cost of supporting a disabled person throughout their life. Particular policies are defended in terms of a reduction to the welfare or medical bills of a nation. This rests on highly dubious assumptions about the cost of being disabled. It replaces human rights with economic rationality. It ignores the fact that anybody could become impaired at any time due to accidents or disease, not just the very small number of people who are born with impairment’.

Shakespeare’s concerns flag the potentially sinister and destructive consequences of equating human life to reductionist economic argument and were also shared by the Clinical Geneticist of this cohort of practitioners who noted: Well (cost benefit calculation) - that’s the economic rationalist argument for prenatal diagnosis…I mean there’s no doubt that to avoid the birth of a child with an intellectual or physical handicap, or long term condition would save the community and Medicare lots of dollars…but it’s a very poor basis on which to value the worth of human life and reproductive choices. Clinical Geneticist

Despite the obvious reservations and flaws, cost-benefit analyses are regularly invoked as a fiscal justification for extending screening programs. Indeed, a recent US study, which estimated the success of prenatal screening against the unsettling criterion of ‘live births averted’ 6 (Biggio et al. 2004, p.726) from a hypothetical cohort concluded that, ‘in terms of overall cost to the medical care system, the most expensive course of action was to offer no screening and incur the expense of caring for infants born with trisomy 21. The majority of the cost benefit attained with the sequential screen is derived from the reduction in the number of trisomy 21 live births.’

Similarly, Harris (2004) and Kupperman (2005) conclude that testing is cost effective at all ages, advocating that screening be routinely extended beyond the traditionally ‘high risk’ over 35 year olds to include all asymptomatic women, as clearly anyone may be ‘at risk’. In their 6

Note the language of risk – avert: to avoid something harmful.

116

Chapter Six

theoretical model, Biggio et al (2004), uncritically present the loss of 1.4 ‘euploid’7, or normal chromosome foetuses, per single Down syndrome child detected as the most ‘successful’ strategy, making no comment on the collateral damage of the 1.4 normal foetuses lost. As the financial ‘benefit’ portion of cost/benefit equation is solely realised by not providing medical treatment to a disabled person for the term of their life (Baird, 1999, Biggio, Morris, Owen, & Stringer, 2004; Caughey, 2005; Cuckle, 1995, 2001; Harris, 2004), such analyses only measure up when termination rates remain high. Cost benefit analyses, therefore, perpetuate the institutionalisation of disability prejudice. The ethically contentious and potentially eugenic nature of the presumption to terminate is not explicitly confronted by any of these authors, while the unwanted fiscal responsibility of caring for the disabled within the community further permeates the discourse of pregnancy, bleeds into institutional policy and practice, and contributes to hostile attitudes to people with disabilities (Parens and Asch 2000). Furthermore, the presumptions of cost-benefit analyses may position the social responsibility to prevent the financial burden of caring for the disabled unfairly onto the shoulders of individual pregnant women. While Cuckle (2001) and Biggio et al (2004, p.726) acknowledge that economic grounds may be eclipsed by social, ethical and political considerations, noting that ‘individual patient desires and values also merit consideration’, they maintain that the fundamental decision ‘should be evaluated from the payer’s perspective’, the ‘payer’ being those who find the health care system.. Against the cultural backdrop of economic rationalism in health care, cited costs of $1220 per detection of Down syndrome compared with an incremental lifetime cost of $228 400 to care for a child with a trisomy (Harris 2004, p.280) illustrates a stark mathematical reality, one which fiscal logic dictates we endorse if economic rationalism is our ‘hypergood’. While most cost-benefit analyses focus on the direct medical costs, ‘for ease of measurement’, Macones and Odibo (2005, para 5) note that ‘it is widely accepted that indirect and intangible medical costs often overwhelm direct medical costs’. Indeed the ‘intangible’ costs of pain, suffering and grief (Macones and Odibo 2005), and the potential cost to women’s ongoing physical and psychological health and wellbeing seem poorly factored into reductionist cost-benefit calculations (Tankard - Reist 2005, p.19). As a result, the 7

Euploid: The normal number of chromosomes for a species. In humans, the euploid number of chromosomes is 46 with the notable exception of the unfertilized egg and sperm in which it is 23. http://www.medterms.com.

Consent and Choice: Social Constraints

117

reduced form of data deemed worthy of consideration in such calculations presents an impoverished, distorted, and incomplete measure. Reflections on why certain procedures come to be funded at the expense of others remain masked in the cost-benefit framework which essentially shapes the choices on offer. As this obstetrician explained: We will always focus on things we can test for, and the things we can’t test for or that aren’t realistic to test for, because they wont pick up enough to justify the cost, obviously those things will just be put down to the bottom, because you cant warn or make people anxious about something you can’t exclude…So obviously from my point of view a child with Cerebral Palsy that is severe, who needs 24 hour care is a lot more to embark upon than a child with Down syndrome…but we have no way of predicting that. I suppose the kind of things we try and avoid are poor outcomes from normal delivery, we’re trying to reduce prematurity, we’re trying to reduce adverse outcomes in late pregnancy anyway, we just can’t test for it though…and we can never really get rid of everything, so that’s why that’s been focussed from a different point of view. The things we can test for will always have a more visible impact on people. Obstetrician.

The unease of acknowledging the concealed value judgments about persons with disabilities that such practices imply and imbue was further voiced by this Obstetrician who noted: As soon as you start educating, you’re going to come up against groups of people, disabled rights groups or right to life groups who will say you are educating people to make judgement values about the worth of a life…and I think that is actually a problem. It’s why people don’t talk about it as openly…some of it reflects individual judgement values about pregnancy choices and the value of a life. I think of it in a much wider scale than just education, it’s the fundamental issues that face society about once you start to talk about it you are admitting that you are placing values on certain levels of normality…and what is a variance of normal versus a true abnormality that kind of thing, people don’t want to face it so they avoid talking about it. Obstetrician

Whenever the subject of terminating a foetus with a disability is raised, accusations of eugenic intent inevitably follow. While many commentators invoke coercion as the key differential in the ‘imposition’ of a eugenic agenda, as previously mentioned, coercion of the more subtle, social forms addressed throughout this work may still constitute coercion. Other social commentators such as Abby

118

Chapter Six

Lippmann (1991, pp.24-25) remain unconvinced by what she sees as the insincere denial of the eugenic intentions within saying, ‘though the word “eugenics” is scrupulously avoided in most biomedical reports about prenatal diagnosis, except where it is strongly disclaimed as a motive for intervention, this is disingenuous. Prenatal diagnosis presupposes that certain fetal conditions are intrinsically not bearable’.

The current focus on cost/benefit analysis as a justification for detecting foetal anomalies from a largely asymptomatic population may indeed represent an emerging form of ‘fiscal eugenics’, discriminatory and eugenic outcomes driven by the privileging of budgetary considerations above care provision within the healthcare system. A 1926 quote from the American Eugenics Society states: ‘Does eugenics mean less sympathy for the unfortunate? ... Eugenics does not; it does mean fewer unfortunates with which to divide sympathy. This is true kindness to both the victims and to society’ (American Eugenics Society cited by Nelkin and Lindee 1995, p. 31).

Rather than dividing sympathy, as the 1926 eugenicists did, we may be embarking on a path to limit the number of disabled members entering our communities by withholding or dividing financial resources. The social context and tacit expectations may therefore act to exert a social pressure on women undergoing such tests by creating a moral space where individuals ‘choose’ to implement society’s prejudices (Hubbard 1988).

Chapter Summary Social constraints identified through the voices of participants and established research show that the rhetoric of choice and the expectation that engaging in prenatal screening will automatically enhance choice has significantly infiltrated our collective psyche and seems generally and unproblematically accepted. However, within the rhetoric, the reality appears to be that choice is deeply constrained and funnelled towards the socially and institutionally endorsed ‘choices made available’. Entrenched negative attitudes towards disability and the poor understanding and under resourcing of people with disabilities create an atmosphere of fear, culpability, and blame; an atmosphere in which choice is further delimited. When coupled with faith that science can provide the much hoped for control over the unpredictability of the human condition, a stance which perpetuates the ‘myth of invulnerability’ (Frank, 1995, p.135), embracing

Consent and Choice: Social Constraints

119

technological intervention to ‘prevent’ disability seems an obvious route to follow. In addition to the socially sanctioned and scientifically revered aims of prenatal screening, the economic rationalist values that increasingly permeate institutional health care dictate that the cost-benefit justifications for pursuing and expanding screening regimes mutually reinforce the scientific and social schema. The factors discussed in this chapter are by no means exhaustive. However, collectively, they illuminate a dynamic of fear and blame overlaid with the promise of control and power, a dynamic which entrenches prenatal intervention as the morally, medically, and financially responsible course of action. While prenatal screening potentially can facilitate enhanced choice for some, when presented routinely and unproblematically in an institutional context which may systematically undermines and impedes women’s opportunities to gain ethically adequate levels of understanding, the underlying socially prejudiced beliefs that drive such intervention remain unspoken. The next chapter will consider the personal constraints that impact upon the delivery, interpretations and acceptance of prenatal screening.

CHAPTER SEVEN CONSENT AND CHOICE IN PRENATAL SCREENING: PERSONAL CONSTRAINTS

In addition to the philosophical, institutional and social constraints previously considered, many personal constraints in achieving informed consent also exist. The perceived need for reassurance, individual perceptions of risk and the belief that the targeted type of information revealed by screening may inject a degree of certainty or confidence into the vulnerability and uncertainty of pregnancy, are commonly cited personal factors which mould women’s behavioural choices. In combination with varying personal capacitates for understanding the often unfamiliar medical routines and terminologies, including risk interpretation, these personal constraints further delimit how ‘choice’ and ‘consent’ may be interpreted and negotiated. It is to these personal factors that we will now turn.

Reassurance and the ‘Desire to Know’ ‘If knowledge is power, then ignorance is powerlessness’ (May 1994, p.77) ‘Knowledge does not always empower; instead it may confuse and paralyze. Parents may have to contend with perhaps the most unforeseen consequence of it all; too much information, that is information they never realised the testing might yield, and information they are not equipped to handle’ (Kolker and Burke 1994, p.165). The quest for ‘reassurance’ coupled with the ‘desire to know’ features significantly in explanations women give of why they participate in prenatal screening programmes (Santhalahti et al. 1998; Press and Browner 1997, 1993; Lippman 1991; Santhalahti 1999; Harris, Connor et

122

Chapter Six

al. 2004). As only 1% - 3% of pregnancies carry some form of abnormality, not unexpectedly, many women experience the reassurance sought. Several studies claim that the virtues of prenatal screening extend beyond that of mere reassurance claiming that screening is psychologically rewarding, an experience that acts as a catalyst for positive behavioural changes such as improving diet or stopping smoking, and one which facilitates increased maternal attachment and foetal bonding (Lumley 1990; Ji et al. 2005). However, these positive outcomes are not universally accepted, with others, for example van den Berg (2005), noting only 8% of respondents felt reassured following prenatal screening. Scanholzer, Gatzmann, Zimmerman and Buddeberg (2000) further argue that there is no concrete evidence of any long term or lasting benefit to maternal attachment, suggesting instead that the reassurance gleaned is simply a temporary artefact of relieving the anxiety induced by the screen itself. Scanholzer et al (ibid) therefore conclude that screening may not enhance the ability to cope with a negative outcome, but may simply prolong the period of anxiety and stress following an unwelcome result. In the absence of any obvious or immediate harm, with no apparent reason to decline, accepting screening with its promise of reassurance and presumption of increased control may appear ‘self-evident’(Santhalahti et al. 1998). This was the case for most of the mothers in this cohort who seemed to believe that, as noted by Whynes (2002), if a test is offered by a trusted practitioner, it must be safe. Reinforcing observations by Marteau and Slack (1992), Calman (2002), and Edwards (2003) have observed that positive health professionals’ attitudes are pivotal in shaping and framing perceptions about screening. The following comments from practitioners in this cohort similarly reflect positive personal and professional attitudes towards screening: I think it can become a very useful test to give early re-assurance, or otherwise for women…it’s the best screening tool that we’ve got. It doesn’t harm the baby; it harms the mother at times (laughs)...it’s easy to do, its relatively cheap…if we can reduce the number of women going straight to amnio then that’s another benefit. Genetic Counsellor 2 I think the main thing if you’re looking at the patient’s point of view for requesting a prenatal screen is probably reassurance because there is a degree of fear and anxiety. Obstetrician Women want to be reassured that their child doesn’t have that (Down syndrome)…more than they actually think about what they’ll do if the test shows they do. General Practitioner 2

Consent and Choice: Personal Constraints

123

I guess they do it for peace of mind to know the baby is OK and not to worry about it for the rest of the pregnancy, or getting prior knowledge of a problem to prepare themselves mentally. Midwife 1

The issue of reassurance for ‘certainty’ was raised by one Genetic Counsellor, (I: Why do women accept prenatal screening?) Because they want certainty and desirability…in their offspring (I: Does prenatal screening give them certainty?) Some, but not full certainty. (I: Do you think people understand what the uncertainties are?) No…because they don’t understand that having a baby is a risky business…they don’t understand that 2-3% of the population will have a problem with their baby…whether it be a learning disability or a turned foot…some people are more concerned with intellectual disability and some with physical…so, no I don’t think that people understand that they don’t start off with 100% chance of a healthy baby. I think people want a healthy baby…because I personally would. Genetic Counsellor 1

Another GP questioned the worth of exposing a mother and foetus to the potential risks of screening if a woman did not intend to ‘act’1 on the result saying, I mean if someone says they are going to go ahead and have the baby anyway, it doesn’t necessarily abrogate the test, but…it then raises the question that if you’re going to do an amnio and turn up a Downs, …given the fact that the amnio has a risk…not only to the foetus, but also to the mother, why do the test?... but if the person for social, religious or you know…emotional reasons has already predetermined what they want to do with their body and their pregnancy, then ultimately you work around that constraint. General Practitioner 1.

While being prepared to accommodate the ‘constraint’ of individual patient’s moral or emotional frameworks, this GP felt a valuable reason to pursue widespread screening was to assist the practitioner. Prenatal screening may be relevant even if a woman is determined to continue with the pregnancy…just purely to make the job of the obstetrician a bit less stressful…and indeed hopefully maximise the opportunity for a good outcome…even if the foetal outcome is not

1

In most of the literature, the only acknowledged proactive action is termination, the decision to ‘not act’, i.e. to keep the child, is commonly presented in passive terms, although this too is an intentional action. See Coory (2007) for example.

124

Chapter Six particularly good you don’t actually want to compromise the maternal outcomes as well. General Practitioner 1.

Positive endorsements from practitioners with their inherent suggestion that there was something definitive and valuable to know were influential for Mary, who explained, They sort of said...well unless you want to go through this whole pregnancy not knowing, you’ve been given this test result this will put your mind at ease…if you want to not worry about it that’s fine but…Mary

Yet the selective list of anomalies routinely screened for includes only a small fraction of the multitude of potential possibilities. Even then, conditions for which treatment can be offered, other than selective termination, are relatively few (Baird 1999; Press and Browner 1997; West and Bramwell 2006). Indeed, as previously flagged, most neonatal disabilities result from ‘low birth weight, prematurity, viral or bacterial infection, birth trauma or accident’ (Baird, 1999, p.9), none of which can be predicted by prenatal screening. A welcome test result in reality offers limited guarantees, and may even create an unrealistic or false sense of reassurance when the result is negative (Marteau et al. 1992). As observed by this GP, the negative psychological sequelae that can flow from poor understanding of the limited scope of screening may be equally distressing or harmful. I do think it’s very important (to make clear what these tests can’t tell you), people still think you can have a blood test for everything…people sometimes come in and say, ‘I want a check up, just test everything’ (laughs)…and they really think you can ‘test everything’…I shouldn’t laugh because we’re obviously not getting the message across…and there are people who think that antenatal screening tests everything. I think you really have to point that out because people will think when they have a baby at the end who may have a club foot…they get really upset…because the ultrasound hasn’t picked it up…they have a lot of faith that the 18 week ultrasound will pick everything up…I think that increases their risk of postnatal depression and just general emotional ability around having the baby…it can effect their enjoyment of the baby, just because they’re not prepared. General Practitioner 2

Several midwives also verified that the common perception among the women in their care was one of overly optimistic trust, captured in this comment:

Consent and Choice: Personal Constraints

125

A lot of women come with the expectation that if the nuchal is OK then everything will be perfect… Midwife 1

Amidst the mothers’ cohort there was a degree of confusion, some cynicism, and even a sense of betrayal about the fragile worth of the much hoped for reassurance. Danielle remarked: I mean I went through that complete stress for nothing and (my mother) still says to me look at that baby, look at that child and you went through all of that...and it was all for nothing...I tend to agree with her…I mean technology has a place…it’s a reassurance for things so far...but it’s limited reassurance. Danielle

Illustrating the observations made elsewhere that the sensation of reassurance may simply be relief from the anxiety generated by the tests themselves (Kowalcek et al. 2002; van den Berg et al. 2005; Harris, Connor et al. 2004; Liamputtong and Watson 2002; Schanholzer et al. 2000), Mary explained: Before the test we had never even discussed it hadn’t even entered our minds…it didn’t occur to us that we could be in this group where something could be wrong…and hadn’t even crossed my mind…(after the amniocentesis)…I guess it’s mind easing to get a good result but I wouldn’t say it was iron caste, it meant to me that I didn’t have to worry about the next few weeks if there was something really wrong…with my obstetrician he just did a scan on me every time I went to see him to make sure that everything was OK, with the baby’s size and so on. Mary

Undoubtedly Mary sensed some reassurance from the ‘good’ amniocentesis result, however, the anxiety raised by the prior ‘bad’, false positive result clearly lingered resulting in 12 anxiety reducing ultrasounds, to ‘make sure everything was (still?)OK. The attitude that false positives were ‘good mistakes’ was raised by Danielle, Their attitude (to the false positive) was like ‘well that’s good news isn’t it! That’s all worked out alright then” and I was like, well yes its great news, but it’s a shame I had to go through it! I don’t tend to question that sort of thing…I mean perhaps it would have been even better news if we hadn’t done the ultrasound in the first place and not gone through that horrific time…yeah…my GP... the doctors at the hospital, once they suspected it was a false positive, they just went…they didn’t want to talk about it…it had nothing to do with their current thing for that week. Danielle

126

Chapter Six

While Mary’s response to her heightened anxiety was to embrace extensive surveillance of her pregnancy, like some of the women in Heyman et al’s 2006 study Terri’s ‘high risk’ status spurred her to ‘disengage’ from her health care providers, to seek her own reassurances through self-directed education. I definitely wasn’t prepared for other problems being flagged, and I really wasn’t interested in finding that out. I had just come to the realisation that none of these tests, and this was never pointed out to me, that none of these tests could help me with the thing I was concerned about (Noonan’s Syndrome). That was never pointed out to me. They told me the tests would tell us about the Down syndrome, neural tube defects would be covered, none of which was what my cousin’s child had, but they didn’t point that out to me – I did my own research, I found that out. I just got on the internet; it took 15 minutes, it’s amazing what you can find there…I thought I've done this for nothing…I was quite anxious about the whole thing. Terri.

Notably, Leanne articulated a strong sense of reassurance and control, while acknowledging that other potential unforseen negative outcomes were possible. Given her consistent focus and fears directed towards Down syndrome, perhaps this one specific piece of information, that her child definitely did not have Down syndrome, was sufficient reassurance. I felt reassured in that…(amnio was negative for Down syndrome), but of course there’s loads of other things that can go wrong as well, besides Down syndrome, at least I knew that was one thing that I could tick off, I was reassured in that, but of course you still worry about loads of other things that you have no control over. At least this I had control over, everything else had no control over, but that I had control and I’m a bit of a control freak.Leanne

Although Leanne could indeed exhibit control and agency in choosing to diagnose or terminate a pregnancy if her child had Down syndrome, in the face of the multitude of uncertainties that exist, her sense of control was perhaps overstated. Lippmann (1991, p.25) claims that the selective nature of the reassurance gleaned from screening is too restricted, simplistic and reductionist to be of any tangible consequence, continuing, ‘at best, reassurance is an acquired, not inherent, characteristic of prenatal diagnosis. Even if testing provides “reassurance”, it is of a particular and limited kind’. Far from delivering clarity, most forms of prenatal screening offer ‘an opportunity to move from complete uncertainty to quantified uncertainty (West and Bramwell 2006, p.66).

Consent and Choice: Personal Constraints

127

While this may seem a more attractive prospect than ‘unquantified uncertainty’, the paradox of this testing dynamic is that asymptomatic women, like the mothers in this cohort, must first have their attention selectively drawn to a particular, though incomplete, list of undesired outcomes, increasing anxiety levels, which engaging in testing may then selectively relieve (Kowalcek et al. 2002; van den Berg et al. 2005; Harris, Connor et al. 2004; Liamputtong and Watson 2002). In a scenario reminiscent of Lindemann-Nelson’s (2001, p. 126) earlier description of the ‘clinically correct story’, screening protocols simultaneously create anxiety in women by decreeing them to be ‘at risk’, then offer a technologically mediated, culturally sanctioned and socially visible way to gain reassurance and lower their ‘risk’. The frequently cited script of providing reassurance through giving ‘time to prepare’ for a child with special needs is often floated as a further positive outcome of screening as this midwife explained: I guess they do it for peace of mind to know the baby is OK and not to worry about it for the rest of the pregnancy, or getting prior knowledge of a problem to prepare themselves mentally. Midwife 1

Yet in light of the elective termination rates, commonly above 90%2, the presentation of screening as a preparatory tool seems exaggerated, while the expectation that anyone could possibly ever be prepared enough was gently rejected by the Down syndrome support volunteer, who explained: People think they can gather knowledge and be prepared, but I don’t think you can ever really be prepared for everything in life. Not knowing myself gave me the chance to enjoy the pregnancy, look forward to meeting my baby, and when the baby was born we were instantly suspicious that something wasn’t right, but there she was and we were offered appropriate support and we moved through the reactions that parents go through, grieving, but I think for women to be put through that when they are most vulnerable and pregnant is just so unfair. Down Syndrome Support Group Volunteer.

The particular type of reassurance sought or provided however is rarely specific. Rather, women seek a broad, general sense of comfort that the pregnancy is progressing normally (Santhalahti 1999; Lippman 1991). The 2 Carothers et al., 1999; Egan & Borgida, 2002; Erikson, 2001; Ford, 1999; Garne, 2001; Santhalahti, 1999.

128

Chapter Six

reassurance that a disabled person will be supported in the community is rarely offered, rather, the reassurance offered is that a defective child will be identified and the frightening outcome of parenting a disabled child will be averted (Bridle, 2004). In spite of these critiques, the perceived ‘need’ for reassurance persists; a need which Lippmann (1991) argues is constructed and perpetuated by technology use itself. When coupled with the widely expressed conviction that knowledge is benign and not harmful of itself, a powerful motivation to engage in screening is formed (Anderson 1999; Press and Browner 1993; Santhalahti 1999). Yet the commonplace belief that all knowledge is valuable or empowering rather than potentially paralysing or confusing is clearly challenged by Kolker & Burke (1994) as already quoted above. Similarly, Regina Kenen challenges, ‘if a “gift” of knowledge offers no cure, is it valuable?’ (Kenen 1999, p. 1545). Indeed, knowledge does not always empower. For Terri, Mary, and Danielle their, perhaps naïve, expectation that the knowledge gleaned from their initial scan might be meaningful, instead invoked intense anxiety as they entered the unforseen ‘grey area’ of imperfect, incomplete, and unable to be completed knowledge which created intense distress and bewilderment. While one GP felt women were acutely aware of the medical reason for screening, which is to find abnormality, the common approach of framing an offer to screen in terms of ‘making sure things are ‘OK’’ instantly raises a suspicion in women that ‘things’ may not be ‘OK’. Thus women are primed to accept the limited reassurance on offer. I think women are aware that the reason the test is being done is to make sure that everything is alright. Now, that’s one way of looking at it, you’ve described it as a more positive search for abnormalities. I don’t think they are diametrically opposed; they are two sides of the same coin, but I don’t think women regard it as just an opportunity to see the baby, they know there is a medical purpose. General Practitioner 3.

The primary purpose of prenatal screening is undoubtedly to detect and to ‘prevent’ disability. Hence, any subsidiary benefits such as gaining reassurance, promoting bonding, or reducing anxiety are all ancillary and surplus to the fundamental task. They are not guaranteed outcomes of testing; hence, to suggest that screening is for these purposes is misleading. Efforts to determine whether prenatal screening predictions have been correct through foetal autopsy are limited. Data gathered in the UK observed that despite increasing termination rates, foetal autopsies rates

Consent and Choice: Personal Constraints

129

which could verify prenatal diagnosis and thus provide valuable reassurance and professional verification are falling (Boyd 2004). Boyd (ibid) further claims that only 30 – 60 % of terminated foetuses undergo autopsy to confirm diagnosis, while a recent French study of 300 foetal autopsies, found autopsy examination changed the prenatal hypowork in 20% of cases and confirmed the original hypowork in 39% of cases3 (Laussel-Riera et al. 2000). Other studies correlating prenatal diagnosis with autopsy findings report a healthier, though still variable 60% - 90% confirmation (Ramalho et al. 2006, p.1087; Tennstedt et al. 1998). While most studies considering the psychological impacts of prenatal screening focus on the outcomes for women (Harris, Connor et al. 2004; Kowalcek et al. 2002; Zamerowski 1999; Leithner et al. 2004; Watson et al. 2003), practitioners too have a vested interest in reassuring themselves. As flagged earlier, fear of potential litigation against medical staff rather than genuine patient need may be contributing to strong recommendations to participate given by many doctors (Press and Browner 1997; Stapleton, Kirkham, and Thomas 2002; Williams, Alderson, and Farsides 2002; Anderson 1999), representing a different form of reassurance, one sought by medical staff, mindful of avoiding possible lawsuits (Williams, Alderson, and Farsides 2002) . Indeed, as mentioned previously, the ‘legal grey area of malpractice for not offering tests’ (italics added) has been identified as a factor in the increasing numbers of women being offered the MSAFP blood test in Canada (Press and Browner 1997, p.980). Hence, a mutually reinforcing bond of anxiety and trust between specialist and patient is formed which entrenches the normative and routinised pathway of the offer and the acceptance of prenatal screening for reassurance. Finally, if women and practitioners perceive the need for reassurance, the question of why women feel ‘at risk’ must be asked. As one genetic counsellor remarked earlier, pregnancy is a “risky business”, but who is at risk, can we know the extent to which they at risk and can risk status change? The next section of this chapter will examine the discourse of risk that has infiltrated our daily language and perceptions, and significantly altered our views of pregnancy and antenatal care.

3

The remaining 41% required minor changes in diagnosis that were not medically significant.

130

Chapter Six

‘Risk’ in the Context of Antenatal Care Risk assessments increasingly permeate various aspects of our daily lives, choices, and perceptions, including those choices relating to health care generally and antenatal care specifically (Helen 2002; Olin Lauritzen and Sachs 2001). Indeed, on reviewing the incidence of the term ‘risk’ over a 24 year period in medical journals, Skolbekken (1995) concluded that we are indeed in the midst of a ‘risk epidemic’ which is both prevalent and contagious. Drawing on the work of Armstrong (1995) and de Swann (1990), Olin-Lauritzen and Sachs (2001, p.499) track the 20th century emergence of ‘surveillance medicine’, from which the ‘not yet patient’ category of illness emerged. In positioning the previously healthy person as a ‘patient in waiting’, attention has increasingly turned to identifying and quantifying the various risk factors that may forecast the likelihood of illness occurring. These forecasts inherently promise prediction and thus control. Consequently, the previously distinct categories of ‘healthy’ or ‘unhealthy’ have become blurred and we are increasingly invited to regard ourselves and others, not as ‘well’, but rather ‘potentially unwell’ and thus in need of scrutiny and surveillance4,5. The ‘dragnet’ effect, which preemptively regards everyone as potentially under threat, has significantly seeped into the discourse and protocols of antenatal care as described below, ‘Intended to benefit everyone equally, the dragnet treats all pregnancies as potentially pathological and needy, drawing pregnant women into anxious dependence on expert medical risk management’ (Alderson, Williams, and Farsides 2004, p.75).

Not surprisingly, the negative language of risk, anomaly and defect that now intrudes into pregnancy care has created considerable anxiety in women. Even use of the word ‘risk’, which invokes the possibility of harm or loss, conveys a strong message of impending crisis. Thus ‘risk’ is not a neutral concept, but one that contains ideological messages which have become ingrained into the contextual and narrative features of the information given to women, features which immediately raise concern and doubt. 4 Abby Lippmann (1991, 1999) further argues that surging interest in genetics will simply exacerbate this established trend, leading to what she describes as ‘geneticisation’. 5 This view is also claimed to be instrumental in the rise of ‘worried well’. See for example (Bates 2007; McCredie 2007).

Consent and Choice: Personal Constraints

131

When the negative language of risk is contrasted against the positive expectations of improved prognosis, promises of better medical management, and maximised outcomes for mother and child, involvement in screening appears an obvious route to follow. Conventionally, mothers over 35 years old6 have been targeted automatically as ‘high risk’, an arbitrary cut off point determined as the point at which the numerical risk of miscarriage through amniocentesis is equivalent to the population based statistical chance of having a child with Down syndrome. However, with the more recent advent and routinisation of the non-invasive nuchal translucency scan, coupled with the knowledge that most children with disabilities are born to ‘low’ risk mothers’ younger than 35 years of age, there is a rising chorus amidst practitioners to lower the bar and encourage all women to undergo predictive screening, as all are theoretically at some risk (Kuppermann and Norton 2005; Kuppermann et al. 1999; Harris, Washington et al. 2004). Increasingly younger women are being routinely invited to consider their risk status, an invitation which encourages compliance with ‘risk lowering behaviours’, such as accepting more testing (Lippmann, 1991, 1999). Heightened risk awareness with its attendant promise of control is simultaneously threatening and relieving. Skolbekken (1995) argues that a troubling consequence of increased surveillance and quantification of risk in health care is that our collective expectations about the where the locus of control in managing these risks lies has been fundamentally distorted. He explains: ‘The risk acceptance that is internalised in a fatalistic attitude to these matters is being replaced by an ideology whose primary goal is to gain control over life and death, where the identification of, and the struggle to reduce/eliminate risk factors have become activities of considerable importance and prestige within the health profession’ (Skolbekken 1995, p.297).

The misplaced trust in our capacity to control nature referred to above by Skolbekken (ibid) was picked up by one midwife and a GP who explained: 6 Anecdotally, there seems to be a downward pressure on the age at which a woman is categorised ‘high risk’. Classified by RANZCOG as above 38 years old, accepted clinical practice now defines women over 35 years old as high risk, although some women report younger categorisation, such as Danielle. This potential trend was also recorded by Tankard-Reist, (2005).

132

Chapter Six People don’t accept that it’s just nature…the fact that nature does some amazing things is all well and good…but nature should not make anything wrong with a baby…but…not only do we want perfect babies, we want perfect birth, and therefore, we want a perfect child. Midwife 2 We’re adding to this expectation of a perfect baby and a perfect child and people are confronted with this all the way along. Then they get a child with autism or bad asthma, who’s in hospital three times a year, or ADHD, or just has a really difficult personality….I mean we’re all imperfect, there’s just different types of disability. I just think as a profession, doctors are buying into that, not only buying in but really pushing it…women may go through this process and have a baby that doesn’t have Down syndrome at the end..have the normal baby...well that’s great, but what if they strike other things done the track…but I think if someone had every test and everything was fine, then they went and found, what is really a (comparatively) small problem, I think it can unhinge some people…because they expected a perfect baby…so that’s one of my concerns about presenting it as routine, of course you’ll have these tests because they’ll produce a perfect baby. General Practitioner 2

Leanne shared the belief that doing ‘all the right things’ within her control afforded her some power over the health outcomes of her baby, I think in the back of my mind I knew it was alright. I was going to classes, yoga and stuff…I knew the baby didn’t have Downs, I knew I wouldn’t have a natural childbirth, I knew I’d have an emergency Caesar, I knew I’d be drugged up, I had a sixth sense, I knew the baby was fine, but then again it was just a control thing. I just wanted to be as reassured because someone has to be the one. And I didn’t want to be. I did all the right things in my pregnancy. Eating properly, going to classes, yoga, aqua stuff and all that. Leanne

Realistically, as expressed by the two practitioners above, much of health care lies beyond our control. Certainly there are instances where the ability to control risk factors may contribute to preventative medicine with its protective benefits in some realms, such as coronary care, for example, where ‘high risk’ individual behaviours such as smoking or diet are identified as impacting on the likelihood of disease. In that case a person has some influence or choice over whether they continue to smoke or to adopt a healthy diet, to proactively lower their risk in light of the clearly documented health risks. However, even that well established population based probabilistic link will not tell a particular individual what their personal risk is in the multi-factorial matrix of chance.

Consent and Choice: Personal Constraints

133

Additionally, in prenatal screening, the ‘risk’ of abnormality in a foetus is assessed through prenatal screening after conception, when the genetic mould, and thus health trajectory, of the child is largely established and unchangeable. While there are other statistical risk factors in pregnancy associated with the mother such as increased age (though evidence on paternal age7 is scant and conspicuously absent from such calculations), diet, substance abuse, folic acid intake, or exposure to teratogenic substances, for women, the most commonly cited risk of having a child with a disability is that of age, something over which a woman has no control by the time they are pregnant. Hence, for these women, the only way to moderate or quantify their individual risk status, for what it is worth, is by engaging in the pre-approved screening provided. Age was cited as a factor by several mothers. Terri, who described herself as ‘over the hill’ at 38 years old explained, I guess because I was a bit older, there were questions asked and it was almost assumed that there were certain things I should do. I was asked quite a few times whether I wanted these tests done. I guess being older, I was 38, because I had gone over the 35 ‘hill’, over the hill (laughs), a lot of the doctors and nurses who saw me were saying ‘what sort of tests would you like - we need to be careful.’ Terri

Danielle whose ‘advanced maternal age’ of 31 was given as a risk factor described: He started saying things like because of my age…I was over 30 (Danielle was 31), that was another indicator of high risk…I just didn’t expect that there would be anything wrong…I had two previous uneventful pregnancies and it wasn’t as though I was 38 or 39…I was relatively young…to be having my third child…I never felt that I should feel at risk. Danielle

Finally Mary, who at 29 had not considered the possibility of finding herself in the ‘high risk’ category recalled: Before the test we had never even discussed it hadn’t even entered our minds…it didn’t occur to us that we could be in this group where something could be wrong…and hadn’t even crossed my mind. Mary 7

Yang et al, (2007, p.696) conclude that ‘advanced paternal age was associated with increased risks of heart defects, tracheo-oesophageal fistulaoesophageal atresia, other musculoskeletal/integumental anomalies, Down's syndrome and other chromosomal anomalies.’

134

Chapter Six

One General Practitioner, who was also an ‘older’ mother, discussed her feelings of being subject to the heightened presumptions of risk for the over 35 year olds. Even armed with her considerable medical knowledge, she made the telling remark, There’s so much more press about it out there now, and particularly, I can tell you as a mother who had gone through two pregnancies as a mother over 37 for one of them, there’s a lot said about it and it almost…It almost feels like it’s inevitable if your older. I was 38, almost 39 with (my daughter); it almost feels inevitable that you’ll have a baby with Down syndrome from all the stuff you hear. General Practitioner 2

However, the risk factors referred to throughout these conversations, which are presented unproblematically as numbers and ratios, are determined on abstracted, population based statistical analysis which have little predictive impact or relevance for the individual person per se, a point articulated by West and Bramwell (2006, p.62): ‘If we accept the premise that identification of these foetal anomalies is desirable, then screening can be seen to have benefits at a population level. However, this is not the same as having benefit for individual mothers and families’.

Yet, there is an abundance of research suggesting that this preferred mode of communicating risk in health care is not well understood by either patients or practitioners (Heyman et al. 2006), and its presumed relevance to the individual may be grossly overvalued. It is to the problematics of ‘probabilisation’ in the risk discourse of health care that we will now turn.

Probability and Risk Perception Prenatal screening results are typically communicated in terms of population based statistical probabilities and ratios, presented as ‘risk factors’ using a statistical language which presumes an ‘abstract mathematical universe’ (West and Bramwell 2006, p.65). However, the quantification of risk factors requires first that we define ‘normal’ in advance, as Olin-Lauritzen and Sachs (2001, p.513) explain: ‘A system of figures and values forms a pattern of normality for the body. If you can decide in advance what is normal and expected then you can normalise, and through that, also exert power’.

Consent and Choice: Personal Constraints

135

In defining normality, the boundaries and limits of abnormality are also defined. Hence, population-based norms are set against which individuals may be similarly measured and compared in a self perpetuating system which flows logically from the premise of surveillance medicine (Olin Lauritzen and Sachs 2001, p.513; Heyman et al. 2006). The social construction of risk is intimately bound to the preferred and available tools of mathematical and statistical modelling, the same tools which then probabilise and pathologise individual patients. Consequently, risks that cannot be quantified in the culturally sanctioned way remain unspoken (West and Bramwell 2006), resulting in selective exposure only to those risks that can be measured (Liamputtong et al. 2003). The risk concerns raised apply to a limited smorgasbord of potentialities – those which are ‘measurable’ by endorsed scientific methods. As risk factors are based on broad population data, their significance when extrapolated to the individual is unclear as Olin Lauritzen and Sachs (2001, p.498) explain: ‘as risk is calculated on an aggregate level and belongs to the world of probability, transformation of risk appraisals to the level of the individual and the understanding of one’s own health is, of necessity, difficult’.

While clinicians routinely and unproblematically present the concept of risk as a population-based number, Getz (2003, p. 2052) points out, ‘to the individual pregnant woman, the population base is one, and a risk of one in one hundred means she can be the one’. The crucial piece of information that no retrospectively constructed risk factor can ever determine, and a theme that reverberated strongly through the accounts offered by this cohort of mothers, is whether ‘I’ am, indeed, that one. As Shelford candidly notes in reflecting on her own experience with cancer: ‘The information that I want is not that 1 in 10 patients will benefit, but whether I am that one. As that information is unavailable, the evidence seems to be meaningless to me as an individual, while obviously being helpful on a population basis to determine best practice’ (Shelford 2003, p.757).

Within the mothers’ cohort Leanne’s narrative strongly centred on the theme of being ‘the one’. Although her age adjusted risk from nuchal translucency was a low 1:1500, the prospect that she could be ‘the one’ extensively shaped her attitudes and choices with respect to the screening she pursued. Highlighting the individual focus of such risk factors, the

136

Chapter Six

problematic number for Leanne was not the 1500, but rather the 1. Shelford (2003, p.757) continues her challenge of risk directed medicine suggesting that statistical modelling has eroded the quality of the particular patient care, further musing ‘whether we haven’t all been bamboozled in to believing that statistics and evidence are really relevant in our care of the individual patient’(ibid). Perhaps, as West and Bramwell (2006, p.64) suggest, people more realistically approach such decisions on a 50-50 basis, in that they either do, or do not, have the condition in question, challenging the presumption that people act rationally upon the mathematical constructs before them. Calman (2002, p.161) also questions the role of probability in decision making, noting that if rationality based, quantified, probabilistic risk factors played any role in shaping behaviour, 25% of the United Kingdom’s population would not continue to smoke. Clearly, rationality, ratios, and statistics alone do not fully dictate individual risk perception in either direction. The probabilistic language of screening is largely foreign to patients, and there is strong evidence to suggest that practitioners, too, struggle with the clinical meaning of these abstract statistical concepts as applied to individual patient care, often displaying poor understanding of probability and commonly overestimating risk (Ghosh 2004). Furthermore, the inherently ‘elastic’ quality and language of risk makes the task of communication complex and fraught as individuals may interpret identical numbers in different ways (Edwards et al. 2003). Confusion about risk and varying perceptions were certainly evident amongst this group of mothers: When they said the risk was what it was, we weren’t particularly perturbed….we went, oh well, 1:74 that’s not so bad…and then they told us what the ‘normal’ risk was, and we thought OK, it is a little bit of a concern. Penny

Similarly Terri explained, I had a 1:500 chance of having a baby with Down syndrome….It was presented as high risk; definitely, they said “it’s a high risk”. I had 3 separate doctors ring me from the hospital, I believe they were registrars, I had never spoken to any of them before, and they all said that to me. Terri

Consent and Choice: Personal Constraints

137

Although the population-based statistical risk of having a child with Down syndrome at Terri’s age of 38 years old is 1:1908, and Terri’s relative risk had significantly decreased to 1:500, she was still categorised as high risk, and felt a sense of urgency, pressure, anxiety and pending doom. Surprised to find herself in a high risk category, Terri continued: In the past I had never considered it. I think because all the medical professional people were saying you need to this and that, it was really brought to the fore… I would never even have thought of that. Terri

The complexities of conveying these statistical nuances, which are selectively interpreted, make the task of risk communication fraught with difficulty. Yet as Helen (2002, p.126) suggest, the risk discourse in pregnancy may invite practitioners to distance themselves to the ‘technical’ realm only, unfairly placing the whole ethical burden on the mother. The following practitioner comments convey the difficulties of risk communication, (I: Do you think women have a good understanding of risk?) No, no…no…Not at all...particularly if we find a risk that we consider to be high. Midwife 2 An objective view of risk is difficult for any person to perceive and it is in fact the subjective view that matters and guides patient choice – is it high risk for them? Obviously with any scan, any variance of normal will make a person anxious, absolutely and I certainly think that it’s the variants of normal that are actually normal that create the greatest anxiety...I think it depends on the degree of the abnormality as to the amount of anxiety that gets created…but it is certainly I think, it is almost certainly a shock to a person to find any abnormality, instead of the other way around which would be more realistic. Obstetrician Probably what the risk means is a bit confusing, because what they know, why they’re having the scan, the risk 1:60 or 1:900 can mean different things to different people….we’ve had women who have had a risk of 1:600 who say, oh my goodness that’s very high I want to have an amniocentesis…and others with a risk of 1:12 saying, well I have an 11:12 chance of being OK…so, it vastly depends on how that woman perceives that risk. Midwife 1

While one genetic counsellor adopted sound educational strategies in conveying risk, her observation that shock may affect capacity to 8

http://www.wolfson.qmul.ac.uk/epm/screening/calcrisk.shtml.

138

Chapter Six

understand, and her acknowledgement that this unfamiliar, and, for some, difficult information may take several visits and considerable time to sink in, further reinforces that routine and immediate screening is ethically and educationally inappropriate. Risk is the perspective of what someone perceives as high risk or low risk. We use numbers and words…such as there’s a 1:200 chance that this pregnancy will discontinue because of CVS or amnio, the miscarriage risk – how do you perceive that, is it high or low?...so there’s 199 chances in 200 that there won’t be a problem…we look at both sides of it…so we put it as a population risk, this risk, how do they feel, etc, we use numbers and words and ask them to express how they perceive the risk….is it a high number or low number for them…(but)…they are usually so anxious and frightened, shocked so their understanding is probably pretty low…I think they need to have graphics or visual imagery as well as words and I think they need to think about it over a few days and they need to have their partner with them and they may need to hear it a couple of times. Genetic Counsellor 1

Another genetic counsellor remarked: I think it’s really hard to prepare people because that grey area will be different for different people…a lot of the time…there’s no doubt it creates a lot of anxiety...there are a few examples in my head where someone got a result of 1:250 which isn’t low officially, it’s just within the high risk category….it may actually not be a terrible risk when you break down the nitty gritty of the figures…and it depends what risk they’ve had before…there are some people who will look at that and feel massive anxiety…but because the risk of the next option is roughly equivalent, that’s a very difficult decision and for some people they can hardly make that decision…it’s so hard...it’s too hard...and I don’t know if you can ever really prepare people for that. Genetic Counsellor 2.

Liamputtong et al’s (2003) study exploring why women rejected screening revealed that the subjective perceptions of risk held by women often differed from those held by health care professionals. Women weighted the risk of anxiety more heavily than their practitioners did (ibid, p.101). Conflicting representations of what constitutes a ‘risk’ further complicated interpretation of risk for mothers and practitioners. For example, the risk for a woman over thirty five years old of having a child with Down syndrome is 1 in 3809, presented by practitioners as ‘high risk’. 9

http://www.wolfson.qmul.ac.uk/epm/screening/calcrisk.shtml

Consent and Choice: Personal Constraints

139

However, the risk of miscarriage while undergoing amniocentesis to diagnose this condition is 1 in 200 (Alfirevic 2003), a numerically higher risk, but one that is presented as a ‘low risk’ procedure. For women trying to grapple with these concepts, the malleable and selective interpretations of ‘risk’, often coupled with poor scientific or health literacy in general (Kendig 2006), may present a barrier to forming secure understandings. Risk interpretation is further influenced by how undesirable the particular outcome is perceived, with expectations of future burden varying widely (Edwards et al. 2003). Thus, perceptions of what life with a disability entails lie at the heart of risk perception. Some women on receiving a diagnosis of Down syndrome in their child felt relieved that this was a condition compatible with life, in which their child could lead a relatively meaningful, though supported life (Bridle 2004). Others, such as the couple described earlier by one midwife, on receiving a diagnosis of cleft palate which may be viewed as a more minor disability, and one of the few ‘fixable’ conditions detected with no intellectual impairment, elect termination. Clearly differing interpretations of social desirability influence how such risk factors are constructed. Lack of scientific or mathematical literacy was raised by several practitioners as a contributory factor in the low levels of risk understandings typically displayed. In addition to the poor knowledge of the critical clinical difference between ‘screening’ and ‘diagnosing’, a lack of familiarity with medical terminologies, and a fragile grasp of the statistical concept and language of risk, also came into play as the following practitioners explain: Even those words…‘nuchal translucency’... it’s not something that’s been around for a long time, there’s not a lot of knowledge, and it’s not something their mothers can tell them about, because they didn’t have it. Amongst their peers, if they know anyone who’s recently been pregnant, they might find information about what is involved. Clinical Geneticist Often the information comes as a shock so they can’t really deal with it they don’t understand too much unless it’s a lethal condition and the baby, it’s just a matter of time before the baby will die, they tend to understand, like black and white. The subtleties are often lost. Genetic Counsellor 1 (Risk)...it’s certainly not something that everyone understands...not at…without really sitting down with them, I think it may get brushed over and assumed that a person had...but it is hard...if it’s high you might throw

140

Chapter Six in the risk of miscarriage and there’s just figures flying at them…it’s not easy. Genetic Counsellor 2

While the vocabulary used by the following GP in explaining risk was perhaps intentionally chosen to convey an expert level of clinical competency, if such language was used in a clinical consultation, this too could become a potentially alienating and isolating barrier for the uninitiated. I would, in broad terms, discuss the validity matrices that are used, the combination of both imaging and serology being used to form a matrix. I would discuss the fact that these are predictive in nature but not conclusive. General Practitioner 1

Confusion about risk was apparent in Leanne’s account, although, perhaps, she paid scant attention to the details knowing she would pursue all available testing regardless: After the 12 week scan the odds came back at 1:1200 or 1:1500. The obstetrician was like well, why do you want to have it done and I said it’s because of my colleague; she was ‘that one’. Then she said OK if that’s what you want we’ll have it done. I think it was 1:1500; the odds went up (after amniocentesis) to 1:3000. (I: So before amniocentesis they were lower?) Yes (I: What were they before?) 1:1500… Then they went up to 1:3000 (I: They were 1:1500, then they went to 1:3000?) Yes (I: That is actually a lower risk, the risk went down?) Yes… I suppose it is...But then...I knew that someone has to be ‘the one’ …and I didn’t want to be. Leanne

Later in the interview Leanne described herself as ‘a statistics person’, I’m more a statistics person so once I had the numbers, once I knew the averages...yeah…I’m a statistics person...Which when you think about that now you could ask why I wasn’t happy with the 1:3000? But the argument is… I know ‘the one’.

In conclusion, presenting risk as a reductionist, probabilistic, and purely numerical decision is ultimately inappropriate, because as OlinLauritzen and Sachs (2001) note, while the concept of risk is linear, bodies are complex and multifactorial, never linear. Linear concepts, such as

Consent and Choice: Personal Constraints

141

statistical risk, are therefore an inappropriate platform from which to assess individual health threat as they fail to capture the subjective notions of desirability that frame risk perception. As population based measures, the relevance of retrospectively calculated, statistical risk ratios to the individual is challenged by West and Bramwell (2006, p.61) who conclude that: ‘The implications may be that probabilistic screening information does not provide useable information and, therefore, does not promote informed choice. Tests may also fail to offer reassurance, or offer false reassurance’.

While the relevance of such data at a population level is clearly important in terms of resource planning and predicting community health trends, their significance to the individual seems overstated, although currently the presumed social benefits have eclipsed and taken precedence over the individual (Heyman et al. 2006, p.2370). Additionally, probability is such a poorly understood, poorly conveyed, and reductionist concept that its persistent incorporation into health communication is puzzling (ibid). Yet, the commonly proffered concept of risk as a function of logic and mathematics continues to dominate medical conversation, rather than being one part of multiple relevant considerations. The strong intuitive and emotional components that play a substantial guiding role in risk assessment are frequently overlooked (Slovic et al. 2004). However, if we desire to manage risk effectively, the rationalist view needs to be tempered and softened (ibid). Runciman (2002, p.113) explains: ‘This is the problem that faces anyone who tries to rationalise and re-order our responses to risk: the quality of the danger always counts for more than the quantity. We can know all the figures in the world, have them neatly set out for us on easy–to–read labels, but everything will still depend on the ways in which we choose to imagine disaster to strike’.

Thus there is a need to inject some ‘proportionality’ into the risk messages conveyed which ‘underscore(s) the ethical importance to balance the level of fear against the level of risk’ (Solomon 2005, p.44).

Anxiety and the Psychological Impact of Risk ‘Risk’ has become a central and inescapable concept in prenatal screening, and once the spectre of risk is raised, anxiety almost inevitably follows. The personalisation of risk (‘am I the one?’), superimposed onto the tension between security, insecurity, reassurance, distress, and the

142

Chapter Six

opposing possibilities of vulnerability and control that screening invokes may create a heightened perception of looming crisis. For many women it is claimed this tension triggers compliance with testing regimes (Lippman 1999, 1999; Getz and Kirkengen 2003). However, as an unquantifiable emotional response, the anxiety experienced by women is rarely considered admissible in the logical risk calculations favoured. The consenting process predominantly focuses on procedural or technical information relating to potential physical harms (Bernhardt et al. 1998), while the equally ethically relevant psychological harms of unwarranted anxiety, increased vulnerability, and emotional wounding, seem commonly overlooked. That prenatal screening could potentially prompt anxiety in women seems a predictable outcome, yet, the prospective immediate or ongoing psychological consequences have received relatively little attention and the limited research that does exist paints a contradictory picture. A number of studies report generally positive effects ranging from little, no, or reduced anxiety (Whynes 2002; Kleinveld et al. 2006; Kaiser et al. 2002), while others note depressive reactions ranging from short term and mild, to ongoing and extensive anxiety (Watson et al. 2003; Kowalcek et al. 2002; Goel et al. 1998). Leithner et al (2006, p.244) make the further observation that the level of anxiety experienced by women is frequently underestimated by clinical staff. Of those citing positive effects or no ‘significant’ lasting distress, Kleinveld et al (2006, p.360) suggests that anxiety is not inevitably a bad thing, but rather an appropriate and necessary psychological response to an actual threat, and thus anxiety illustrates an appropriate level of engagement in the process. Whynes (2002) further reports uncritical and unproblematic acceptance of screening regimes, restating the potential soothing effect that the reassurance of ‘good’ results from prenatal screening provides and defending screening as a positive bonding opportunity for mother and child. As background levels of anxiety may be heightened during pregnancy, some of the authors above present screening primarily as a positive opportunity to reduce existing anxiety. However, as previously discussed, any reassurance gleaned may be simply an artefact of screening. It is certainly not a guaranteed outcome; hence, justification on these grounds alone is misleading. Conversely, others have observed that the psychological responses of different women to the various forms of prenatal screening commonly

Consent and Choice: Personal Constraints

143

include ‘considerable short term anxiety’ (Watson et al. 2003), acute distress akin to a ‘major depressive episode’ (Leithner et al. 2006), ‘a depressive reaction’ (Kowalcek et al. 2002), and ‘serious psychological harm’ (Goel et al. 1998). While West and Bramwell (2006, p.62) were referring specifically to maternal serum screening when they concluded that ‘information generated by the serum screening test is not information most people can understand, use to make decisions, or that can alleviate their anxiety’, as discussed earlier, the commitment to convey risk of all kinds in narrow probabilistic terms pervades the discourse of all screening, thus, this comment may equally apply more widely than just the serum screen. While short term anxiety passes for some (Watson et al. 2003), other studies note a consequential anxiety that may last well beyond the immediate period of testing with Hall et al (2000) observing negative psychological effects from a false negative result continuing for up to six years. Of the mothers in this cohort, a broad spectrum of anxiety levels and responses were represented. Some, like Penny, disengaged from the risk discourse to alleviate their anxiety: I think we just fobbed it off to be honest, I don’t remember wondering or pondering if this would be a child with some abnormality…for the rest of the pregnancy…in saying that though (daughter) didn’t move much, so at night I would sit and poke my stomach and say “are you OK in there”, just to get her to wriggle…I don’t think I was thinking about the result…that had passed. Penny

Elizabeth proactively rejected screening from the outset and never personalised the risk predictions. She explained, I had said, no I didn’t want it because I didn’t want a pregnancy that for the next 20 or so weeks where I was told I could be high risk and it turns out to be nothing. She (the physician) was supportive of that, she said, OK, you’ve done your reading. Elizabeth

However, for others, the stress and worry described was still evident and raw up to two years after the event as Mary describes, After the high risk result from nuchal translucency was given…I was a basket case…I didn’t know what to do…who to talk to... It had only just been developed, it was only just out there…and there was really no-one to talk to.

144

Chapter Six (I: Did those doubts still linger after the amnio result was clear?) Yes…they still lingered, but not as heavily…the doubt didn’t go until he was born. Mary

Contrasting this experience with her first pregnancy four years earlier, Mary explained how her perceptions of doubt and risk had irrevocably changed, With (my eldest) it was just, I was pregnant, it was great…I had the usual scan at 18 weeks, but with the second, it was harder because I had miscarried at 10 weeks with the previous pregnancy, those first 10 weeks were the hardest, and then 2 weeks later they said…It could be a Downs baby…we’ll just wait another 5 weeks to find out…so that was one of the worst pregnancies that I could have endured, in my mind…The first 12 weeks with my third were sort of “Holy Crap” I’m pregnant again and I’m an idiot…for me it was “Oh no…I have to go through all this again…all the stress”…I loved that first pregnancy a hell of a lot more…because there was no stress and no worry…everything was good…you’d have an appointment every few weeks, everything was fine and we moved on…there was no doubt. Mary.

Terri became caught in limbo between rejecting further testing on the grounds that it was ‘too risky’, while still harbouring grave reservations and concerns about the health and future of her child, describing herself as ‘almost depressed’, It was very hard for a while, I couldn’t put it out of my mind, but once I got to the end, I was at a stage, like most women, I just wanted it to be over, so there was a period of months where, almost 3 months where I think I was almost depressed…After I did have him, I was looking at him through the crib, I was in a wheelchair, I was looking from an unusual angle and the crib had distorted his face, and I just thought, “Has no-one else noticed that?” It wasn’t until an hour later when they brought him round that I could see he wasn’t Down syndrome, but yes…for an hour I thought…yes…in the past I had never considered it. I think because all the medical professional people were saying you need to this and that, it was really brought to the fore. Terri

Similarly, Danielle rejected the risk of further testing, and spent the remainder of her pregnancy in emotional turmoil, I spent the next 6 months basically not entirely sure…and even when she was born...I had seen a lot of babies with syndromes…I knew when she came out she didn’t look like a syndrome baby…but I still had to check

Consent and Choice: Personal Constraints

145

with the paediatrician…it wasn’t until then that I realised how much it had been worrying me for the last 6 months…even although we told ourselves it was probably fine, I was still quite worried…that was pretty hard. Danielle

While not all women experience anxiety, and of the seven mothers in this cohort, Leanne’s proactive pursuit of screening left her positively reassured, Danielle’s description of the impact of this experience warrants inclusion as it captures her deep emotional wounding and fracturing experienced after being told of the soft markers on her child’s ultrasound scan. Danielle further revealed that ‘even now’, two years after her daughter’s birth, the doubt lingers. Because...the complete sadness of it...it was like mourning…having a grieving period for a baby that was inside you …growing… but you didn’t …(sighs)…I guess just that loss of control and loss of hope that you have...for 18 weeks it had been a joyful period...and then suddenly it’s put to a screeching halt it was just...it was just horrendous...I wouldn’t wish it on anybody...no sleep...I couldn’t concentrate, couldn’t focus…on anything…it was really terrible...I was just...just ...yeah...it completely shuts you down...you have no control over it...for us ….we were facing the completely hideous decision of aborting this baby or even worse...or having a baby with Down syndrome and looking at the ramifications for that child and for our existing children...for the rest of our lives...or just wait till she was born and deal with it then...Even now I look at her sometimes and I think I wonder if there’s a lag over problem...not that she’s developmentally delayed in any way………but that’s still in the back of your mind...I don’t worry about it, its just a niggle that’s there...it was just hideous...horrible, horrible, horrible...(sighs). (I: Can you talk about the joyfulness of your pregnancy?) (pause)...it...disappeared...just...disappeared...completely disappeared...I wouldn’t say it never returned…but from then on it was certainly tinged with...not sadness…but fear and uncertainty…that in my mind…my husband says that when we left that surgery, the impression was that the obstetrician had said it was 100% sure everything was fine, but in my mind, I left that surgery with him saying unless you do amnio I can’t be 100%, but I’m pretty sure…like 98%...and for me that 2 % was like…phew…should I do the amnio…but I wasn’t going to do it…yeah…it was still a joy to be having the baby…it was an event that we had joyful anticipation for…but certainly it was from then on it was tinged with worry and fear…that something was wrong. I was a lot less blasé, any differences I would be very concerned about. Danielle

146

Chapter Six

Perhaps surprisingly, Kowalcek et al (2002) concluded that the depth of stress experienced was not related to the invasiveness of the procedure, and that indeed, those undergoing a non-invasive ultrasound had higher depression levels than those undergoing invasive amniocentesis or CVS. Leithner et al (2006, p.245) similarly noted that regardless of the invasiveness of the test, or the confirmed presence of a fetal anomaly, all women suffered ‘acute distress’, ‘we found that all women in our sample experienced acute distress, not only those with proven foetal malformations, genetic disorders or intrauterine foetal death, but also those referred with the diagnosis of a sonographic sign. Given the fact that ultrasound is not associated with a painful experience or the possibility of fetal damage, we assume that the perceived stress derives from the fear of an adverse diagnosis and its consequences’.

As the tacit and unconscious possibility of anomaly becomes an intrusive and stressful probability, the unspoken fears come to the foreground creating the depressive moods observed in women prior to undergoing prenatal testing (Kowalcek et al. 2002). Given the multitude of factors that determine risk interpretation, prediction of how different women respond to ‘risk’ is highly fluid and thus notoriously difficult to pin down. Risk perception, and the subsequent anxiety that flows from it, is contingent upon each individual’s unique life experience, and thus varies with time, culture, history and the contextual realities of each woman’s life (Rapp 2000). Perceptions are subjective, moulded by the particular context at a particular point in time, and particular previous experience as Anne remarked: I think another part of that was that in my experience, I had had a child with an abnormality, so realising how real that can be, if you have never experienced that, you may think well that’s a world away, that doesn’t touch me, but when you’ve experienced it you realise that It can touch you, it can touch anyone, nobody is buffeted from that...it’s a real part of life, a real part of having children. Anne

As noted previously by Liamputtong (2003, p.101), women’s perception of risk may vary from their practitioners. Additionally, the risk perceptions of practitioners may be significantly skewed working in a tertiary care hospital specialising in birth anomalies in which the prevalence, immediacy, and likelihood of such an outcome may become exaggerated. However, physicians have the difficult task of balancing

Consent and Choice: Personal Constraints

147

their professional and legal obligation to inform about remote but potentially serious outcomes, while not unduly causing needless anxiety or giving false reassurance. Perhaps, the final word on risk, anxiety, and harm belongs to Terri who recognised the vulnerability of her situation, and implored that more gentle and considered approaches be taken with women in this potentially susceptible place, Pregnancy, well it’s a vulnerable time, and this pregnancy was vulnerable for me, I’m sure there are lots of women in the same boat…We really need to tread more lightly. Terri

Yet as Hoffmaster (2006, p.41) laments, ‘vulnerability doesn’t mean much to morality because, in part it is missing from moral philosophy, yet it is our very vulnerability that creates the need for morality’. Attending to the moral and ethical dimensions of prenatal screening within a vulnerable population thus demands more than calculating and dispensing numerical risk information.

Chapter Summary The personal constraints impacting upon personal behaviour and capacity to exercise informed choice include the need to be reassured, often articulated as the ‘desire to know’. Such motivations reveal a presumption that there is something valuable to know, that all knowledge is valuable, and that such knowledge can be readily accessed through the culturally sanctioned practice of prenatal screening. Most of the women and many of the practitioners of this cohort cited the desire for reassurance as the most common motivating factor driving the increasing use of prenatal screening. However, need to be reassured is prefigured by an existing anxiety; a heightened level of risk awareness that Lippman (1991) argued was largely created by the prospect of testing itself. The negative language of risk and presumptions of anomaly that frame the offer to test may create, therefore, a self-perpetuating dynamic of intervention. Further evidence exists in the literature that statistical measures of probability and individual risk in which such offers are framed are generally poorly understood by patients, while the presumed relevance of population based figures to the individual are overstated. While such statistical representations may be meaningful for population-based health management, they do not assist the individual woman in answering the critical question to her of whether she is that ‘one’. The inability to make meaning of these ratios and probabilities thus represents a personal

148

Chapter Six

constraint to the giving of informed consent. The increased levels of anxiety expressed by several members of the mothers’ cohort illustrate the harmful and ongoing psychological impact of risk. These (largely avoidable) harms, many of which flow from lack of understanding as a consequence of ill-informedness, or under-informedness represent ethical harms, harms which may be minimised through reflecting upon the shortcomings of currently accepted protocols and transforming practice to support women’s ethical decision making.

CHAPTER EIGHT INFORMED CONSENT AND PATIENT EDUCATION IN CLINICAL CARE

Consistently poor levels of informed consent observed in a number of studies overseas were likewise apparent in the accounts of participants in this study. Additionally, the observations made by practitioners further suggests that low levels of understanding and informed consent are a common scenario for women undergoing prenatal screening in their clinical care. Numerous philosophical, institutional, social, and personal constraints were identified in this research in-line with the research outcomes noted elsewhere. Additional factors revealed included the segmented service delivery models of care which create blurred accountability for ‘informing’ amongst practitioners coupled with the legal ramifications of termination which, depending on the context, can hinder transparency in practice and infiltrate policy. Ineffective data collection and analysis further inhibit evidence-based reflections in protocols of care. Collectively, these factors may exert a significant impact upon practitioner and patient capacity to jointly achieve the necessary levels of reflective understanding prior to screening required by ethically robust informed consent. The experiences of this cohort illuminate scope for improvement in how women and their carers are supported in achieving the ethical standard and safeguard of informed consent. While many of these factors are firmly embedded in the wider social, technical, and cultural context of prenatal screening, collectively, the experiences of this cohort suggest a failure of educational processes prior to testing. The lack of prior education expressed by the participants of this study was also prevalent in previous studies flagging clinical approaches to patient and practitioner education as an area of potential transformation. As previously suggested, the crucial ethical difference between consent and ‘informed’ consent is the incorporation of some form of education or

150

Chapter Eight

learning opportunity, with the transfer and construction of the appropriate knowledge and understanding prior to accepting any medical intervention. ‘Informed consent’ is thus ideally given from a position of understanding after careful reflection and deliberation of the central facts relevant to each individual. Thus, the moral integrity of informed consent in clinical care is inextricably linked to patient education. Accordingly, a vital ethical requirement of the patient-health carer relationship is one of a mutual teaching and learning partnership, in addition to the obvious therapeutic partnership. However, current patient education protocols show little awareness, and incorporation, of established learning theory or practice, and do not explicitly acknowledge the ethical importance of patient education. An important way to support informed consent would be, therefore, to incorporate the critical insights and understandings offered by educational theory and philosophy into the informed consent process in clinical care. With this fundamental link between ethical practice and patient education in mind, it is helpful to explore some foundational insights offered by educational theory, research, and practice before discussing how these insights may be incorporated into clinical care. While these insights will be applied in the context of prenatal screening, the ethical importance of patient education is relevant across all forms of medical intervention. Hence, the educational insights offered in this chapter may apply widely beyond the narrow context considered here.

From Information to Understanding: the Bridge of Learning ‘Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?’ (Elliot 1962, p.107)

As the gaining of knowledge is crucial to becoming ‘informed’, a change in strategy that acknowledges the ethical importance of patient education and incorporates a transformative learning experience into current clinical practice regimes may provide a successful vector for change. The insightful observation by T.S. Elliot (ibid) above suggests the need to move beyond the mere delivery of ‘information’, to foster the ethically required knowledge, understanding and, perhaps, wisdom. In recent decades educationalists have moved beyond stimulus-response, transmissive or ‘mechanistic’ models of learning towards a more holistic,

Informed Consent and Patient Education in Clinical Care

151

interactive, and responsive model of ‘learner centred’ education. Knowles, Holton and Swanson (1998, p.35) contend that this shift is not new, rather it reflects an approach to learning as a ‘process of mental inquiry, not passive reception of transmitted content’, anchored to a pre-modern view of education as practised by revered teachers of ancient times such as Confucius, Jesus, Aristotle, Socrates and Plato (ibid). When applied to the human condition, Reese and Overton (1970) further claim that the more appropriate holistic view recognises the interactive, interconnected, evolving and ongoing nature of learning, a process which may not necessarily progress in a sequential or ‘logical’ manner. This view is further echoed by Bruner (1991, p.2), who notes, ‘Knowledge growth is not uni-linear or derivational in a logical sense; mastery of one task does not assure mastery of other tasks that in a formal sense are governed by the same principles. Knowledge and skill, rather, are domain specific and, consequently, uneven in their accretion. Principles and procedures acquired in one domain do not automatically transfer to other domains’ (Bruner 1991, p.2) .

Along such a circular, or spiralling, pathway learners revisit prior beliefs, incorporate past presumptions, and intentionally filter in or out specific information, often in conflict with the presumed rational importance that such information represents to others (Reese and Overton 1970; Bruner 1991). In the context of prenatal screening, the presumption that the presence of disability in a foetus is critical information to be tenaciously pursued, or that the quantification and disclosure of risk factors is universally meaningful, are clearly not shared by all parents, as illustrated earlier. Some of the women in this study experienced intense pressure, incredulity, or disbelief from practitioners and peers when they expressed an unwillingness to conform to the expected logical norm, or to accept the presumed values of their practitioners. The consequence for them was often one of deep alienation, anger and distress. A holistic educational orientation embraces the reality of multiple interpretive and possibly contradictory, layers of embeddedness. This educational orientation therefore sits comfortably beside the phenomenological and feminist accounts of ontology articulated earlier and further resonates with the philosophical foundations adopted. Furthermore, the holistic and embedded stance recognises that learning, like ethics, is significantly a social rather than technical process, one which is socially, culturally, and historically situated (Gage and Berliner 1991; Biggs and Telfer 1987; Knowles, Holton, and Swanson 2005; Mezirow 1996).

152

Chapter Eight

In the educational literature, learning is widely accepted as a fluid, inter-connected, and multi-step process embedded in time and inextricably linked to previous learning experiences and existing interpretive filters (Knowles 1990; Knowles, Holton, and Swanson 2005; Mezirow 1996; Bruner 1991; Mezirow 1991; Gage and Berliner 1991). Learning is an ongoing process of refinement and feedback, rather than an episodic event. The administrative event approach to ‘consenting’ patients has been stridently criticised by Wear (1998), who argues that the treatment of consent as a minimalist, administrative event rather than an ongoing and dynamic relational process, has created a major obstacle to realising the ethical intentions of informed consent. As Wear (ibid, p.96) remarks, ‘No one-shot event can be expected to have much success in pursuing such goals (of actual understanding)…A process model can verify and strengthen what an event model cannot’.

When the role of knowledge building or learning is recognised as intrinsic to ‘informed’ consent, it becomes apparent that informed consent must inevitably be recognised as ongoing since the very nature of knowledge construction upon which its ethical credentials rest are inseparably bound to an ongoing and dynamic educational process linking past, present, and future knowledge. Furthermore, within the context of prenatal screening ethical decisions are made over time as a person undergoes changes in their emotional, physical, and knowledge status (Press and Browner 1995, para 8; Woods and Barrow 1975). Hence, there is a strong need to open educationally reflective spaces within institutional frameworks that support ongoing meaningful dialogue. Significantly, these educational spaces may also be regarded as open moral spaces (Urban Walker 1993) where the values, beliefs, and judgements that guide patient and practitioner behaviour may be subject to critical reflection.

Exploring Adult Learning The acceptance of education as an embedded and holistic process linked to prior learning has significantly replaced the outmoded transmissive, episodic, or compartmentalised view of learning (Knowles, Holton, and Swanson 2005; Mezirow 1996; Daloz 1986; Gage and Berliner 1991). Thus incorporating widely accepted educational insights

Informed Consent and Patient Education in Clinical Care

153

into clinical care could significantly support the realisation of informed consent. A vital characteristic of patient learning in the context of antenatal care is that all the participants (patients and practitioners) are adult learners. Much has been written in the past few decades about the unique features of adult learning. While some controversy remains as to whether adult learning is significantly different from child learning, and many commonalities on the continuum of ‘learner centred’ education are apparent, it is generally accepted that developmental differences, capacities, and expectations between adults and children do exist (Knowles, Holton, and Swanson 2005; Russell 2006; O'Brien 2004; Taylor 1996). These differences call for tailored educational strategies. Perhaps the three most influential scholars writing in the field of adult education are Malcolm Knowles (1970, 1984, 1989, 1990, 2005) who developed the Adult Learning Theory drawing on the critical differentiation between andragogy (adult education) and pedagogy (child education); Jack Mezirow (1991, 1996, 1997, 2000) who developed the Transformational Learning Theory; and finally Paulo Freire (1985, 1990, 1993) who proposed the Critical Social Theory which explores the central role of education and critical reflection in social transformation. Considering each of these in turn, for Paolo Freire, education is the key to awakening the critical consciousness to effect social transformation through promoting equity and redressing the oppressive elements in society (Freire 1985). Thus, the focus of Freire’s writing in adult education is informed by the desire to effect broad societal reform within dominating hierarchical social structures. Such a framework for understanding adult education thus lies beyond the immediate focus of this research which is concerned with the clinical education of patients for the purpose of giving informed consent. While Freire’s work is influential and insightful, more fitting frameworks exist to respond to the immediate questions raised in this work. The Transformational Learning Theory of Mezirow (1991, 1996, 1997) rejects the objectivist (detached) paradigm of learning (Mezirow 1996, p.159) and proposes a interpretist paradigm which recognises the embedded, social, cultural, and emotional aspects of learning. Mezirow further differentiates between instrumental learning (detached, rational) and communicative learning (looking for meaning), acknowledging the importance of language and communication in providing an explanation of how people make meaning of their experiences. The capacity to make

154

Chapter Eight

meaning, to reframe and successfully identify and challenge pre-existing assumptions, lies at the heart of Mezirow’s (1991, 1996, 1997) transformational framework. Within this framework it is claimed that appropriate education may encourage each individual to become ‘a more autonomous thinker by learning to negotiate his or her own values, meanings, and purposes rather than to uncritically act on those of others’ (Mezirow 1997, p.11), a goal in line with the aims of this project. Mezirow further endorses a learner-centred model of education in which teachers are seen as facilitators rather than authorities. While Mezirow (1991) claims to have advanced the adult education debate beyond the distinction of Knowles’s (1970) andragogy vs. pedagogy divide through strengthening the place of critical reflection in the process of making meaning, the foundational doctrines and ontological premises of both models are not markedly different. Both acknowledge the embedded nature of meaning and interpretive frameworks, both are based on building trust and relationship in a learning partnership, both promote the establishment of common learning goals, both acknowledge the influence of prior experiences on new learning, both accommodate the unique contextual features that shape each encounter, and both advocate the creation of an environment that nurtures joint collaboration and mutual respect in the learning process. However, the twelve key propositions of Mezirow’s (1996, p.62) ‘emancipatory paradigm’ are not easily transferred into an accessible, practical educational model within clinical care. The features which Knowles (1990) claims are specifically characteristics of adult learning, or andragogy, were substantially defined and developed in the 1970 publication, The Modern Practice of Adult Education (Knowles, 1970). In this work, clear distinctions between the dominant, child focused ‘pedagogical’ frameworks of learning and the adult oriented ‘andragogical’ stance were drawn, centred around six key characteristics of adult learning, characteristics which capture the ontological coherency and moral significance of education. For the purposes of this work, we must acknowledge that clinicians in the context of antenatal care are not seeking to promote Freire’s (1985) broad social reform, nor are they seeking to transform inherent societal prejudices and inequities. While they may be seeking to promote informed participation in health care decisions that are in line with a patient’s individual values and moral frameworks – it is beyond their brief to

Informed Consent and Patient Education in Clinical Care

155

transform existing individual interpretive frameworks as proposed by Mezirow (1996, 1997). Thus, considering the context of this research, Knowles’ Adult Learning model provides the most appropriate and accessible practical framework for strengthening patient education and understanding in the clinic. For these reasons, the framework proposed by Knowles will be adopted as a broad template for educational reform throughout the remainder of this work. Knowles (1970, 1990) and Knowles et al (2005) argue that pedagogical approaches to teaching that emerge from consideration of how children learn, promote overly didactic and transmissive strategies, condemning the learner to a position of inferiority and submission. As the permissible sources of learning are those which emanate from the ‘teacher’, pedagogical models limit the knowledge worthy of pursuit to that which the ‘teacher’ deems as a relevant inclusion. The learning experiences of the mothers of this cohort certainly reflected an authoritatively centred, didactic approach in which the ‘expert’ professional often selectively transmitted the information which they judged to be important. This view was also evident in several of the practitioners’ comments shared earlier. As noted previously, exploration of what knowledge is privileged for discussion or inclusion within clinical conversations remains largely unchallenged, and such a tacit and accepted part of the background asymmetrical power dynamics that it often escapes consideration (Sherwin 1998). Knowles et al (2005) argue that this authoritative and instructive approach has been alienating to most adult learners as it fails to resonate with the developmental capacities and the expectations of equality that independent adults have come to anticipate in other areas of their lives. Knowles (1990) claims that a further source of alienation for adults under the pedagogical model is that full responsibility for what is learned, how it is learned, when it is learned, and on what criteria it will be judged as successful, are placed firmly in the hands of the teacher. While this locus of control may be more tolerable in childhood education - although increasingly child centred educational paradigms are becoming the norm the developmental stage of independent adulthood makes these presumptions potentially isolating for adult learners. As the pedagogical model potentially relegates the learner to a passive and submissive role, Knowles (ibid) suggests that the inevitable power imbalance created is grossly inappropriate in fostering the educational partnership sought between competent adults, a view also proffered by Mezirow (1996). The

156

Chapter Eight

key differences identified by Knowles et al (2005, pp.64-69) between andragogy and pedagogy are defined across six foundational areas that prefigure how learning is approached. They arI: • • • • • •

The need to know The learner’s self concept The role of experience Readiness to learn Orientation to learning Motivation to learn

While Knowles’s work has been critiqued for its loose definition of ‘adulthood’ (a poor definition that has hindered consistency in research), for the insistence on describing andragogy as the intangible ‘art’ as well as the ‘science’ of helping adults learn, and for the claimed lack of empirical evidence to support the assertion that andragogy provides a superior approach to adult education (Brown 2006; Rachal 2002), similar criticisms may equally be levelled at the other dominant educational frameworks. Meanwhile, the andragogical lens retains its appeal as Rachel (2002, p.212) notes, ‘the significance of andragogy continues to engage us’, concluding that ‘perhaps all adult educators would be sympathetic to the view that as much of the spirit of andragogy should infuse adult learning situations’ (ibid, p.224). Hence, Knowles’s work may be seen as a ‘work in progress’, that is, an approach to adult learning whose full parameters are still being defined. In its current form, however, it provides a workable, though not canonical, framework for strengthening patient education in the clinical context.

Characteristics of Adult Learning Expanding upon these six criteria, ‘the need to know’ from a pedagogical stance is determined by the teacher, the teacher decides when, what and how much the student needs to know. However, from an andragogical perspective, adults must first be convinced of the worth ‘to them’ of any proposed learning and feel personal commitment and motivation to learn before they are willing to invest the required mental energy. Hence, if adult learners are not convinced of the need of the proposed learning, they are unlikely to engage in it. Several mothers in this cohort disengaged from the process as their need to know was clearly out of step with what their practitioners presumed they needed to know. These disagreements between women and their practitioners about what

Informed Consent and Patient Education in Clinical Care

157

knowledge was relevant was interpreted by some practitioners as rejection, and by some mothers as alienating, resulting in feelings of being misunderstood, as Anne remarked, I felt misunderstood; I felt that they couldn’t understand why I didn’t want screening especially if there was a potential problem, almost as though I was being irresponsible…I felt that I wasn’t fitting in that, I was bucking the system…that I was almost, a tinge of being irresponsible in that, here we are, we can prevent these nasty things happening to you as a parent, not considering the child, and we can make your life easier and if you let us, we can take care of this and you can lead a happy life and not have to concern yourself with a child with special needs. I said I didn’t want an amniocentesis, and explained that I would have this child whether there was something wrong or not…I felt like I wasn’t accepting their help, and they thought I needed their help and that I would want to make that decision based on knowledge of this unborn child, an yet I didn’t, and that I felt, they didn’t understand. Anne.

Thus the fundamental starting point for clinical education ought to be mutual negotiation of what the learner needs to know. The learner’s self concept may also differ between adults and children. Pedagogy presumes dependency in the learner while andragogy acknowledges the developmental stage of adulthood as one of self direction and independence in which learners have matured to a point where they are significantly ‘self’ directed, not ‘other’ directed. Thus, the motivation to learn must come from an intrinsic desire or perceived need to become better informed. Consequently, the commonly adopted, though educationally outmoded, transmissive, didactic educational teaching strategies often adopted clinically fail to penetrate. Modes of adult education that require dependency on ‘expert’ teachers may, therefore, cause disaffection, as adult learners can ‘resent and resist situations in which they feel others are imposing their wills’ (Knowles, Holton, and Swanson 2005, p.65), as Anne’s experience demonstrated earlier. The role of the learner’s experience in shaping attention levels, motivation to learn, and knowledge development, are significant and central considerations in adult learning. Adult learners have accumulated a vast reservoir of prior knowledge and interpretive frameworks through their wide-ranging life experiences and such experiences significantly shape their reading of the meaning and worth of current and new information. The recognition in educational philosophy of prior experience shaping current understanding strongly resonates with the hermeneutic

158

Chapter Eight

dimension of ethical engagement discussed earlier, acknowledging that our interpretations are ‘always already’ constituted to some degree. The heightened awareness and intentional inclusion of prior learning in andragogy contrasts with the dominant pedagogical view in which prior experience in children is known to be limited; a stance which legitimises and reinforces the privileging of teacher experience above that of the learner – but which is out of place when educating adults. Readiness to learn for the adult learner is triggered by the need to acquire some skill or knowledge that is tied to real–life situations. An adult learner’s readiness to learn is thus linked to their social role and conditioning, thus the unique particularity and context of an individual’s life has considerable effect on capacity to learn, further resonating with and complementing the phenomenological framework adopted throughout. Finally, the differences in the orientation to learning and motivation to learn were observed by Knowles (1990). Child learners, Knowles argued, are predominantly motivated by external measures such as the desire for good grades, gaining teacher approval, or avoiding disapproval, and equating learning to the logical mastery of content or subject matter. Adult learners are more problem-centred, embracing learning as a means to solve actual and immediate problems in real life situations. The adult orientation to learning is to seek new knowledge which will be practically applied in the short term, with the most common motivating factors being to increase one’s sense of coping and self esteem. If differences exist, and it seems that there are psychological developmental reasons why they would (Taylor 1996), it follows that strategies and conditions for successful learning will also differ between adults and children. Hence, certain approaches to, and pre-conditions for, learning will be more successful for adults. If we hope to facilitate appropriate learning opportunities for patients in the context of health care delivery as an ethical imperative integral to the giving of informed consent, these further six conditions of learning defined again by Knowles (2005, pp.93-94), ought be considered. • Adult learners are motivated by the ‘need’ to learn, thus educational opportunities must be responsive to the particular needs of each individual. • Learning builds upon and integrates existing experiences. • The physical environment must be comfortable, free from distractions and conducive to positive relational interaction

Informed Consent and Patient Education in Clinical Care

•

• •

159

between the teacher/facilitator and learner. Additionally, the adult learner must perceive a mutual trust and respect in a collaborative, cooperative partnership. The goals of learning are mutually defined and ultimately must be perceived as the learner’s goals. Teachers can facilitate and support learning but the core responsibility and motivation rests with the adult learner. Adult learners must share active responsibility for what is learned. Participation breeds a sense of commitment necessary to genuinely pursue the goals of learning. Learning opportunities are designed in such a way that a sense of progress and success is created. Additionally, adult learners retain some control and negotiation over how progress and success are defined.

These principles and conditions have permeated adult education in many areas from ongoing professional and industry skill development and training to university course structures. However, their ethical importance in clinical care and relevance to patient learning remain consistently overlooked. Explanations for the failure to embrace adult learning principles in institutionalised medical care are exacerbated by the proposition that as illness is a time of vulnerability and dependency, the presumptions of independence or self direction a key doctrine in adult education, may not apply (Goodwin-Johansson 1988, p.12). Further explanations point to inherent power dynamics within the social and institutional contexts of medical care where a person in the ‘patient’ role is socially conditioned to submit to the authoritative expertise of professional health carers and, thus, may not exert their full autonomy. Some of these considerations are apparent in antenatal care, such as increased background levels of anxiety and vulnerability (Goel et al. 1998; Kowalcek et al. 2002; Watson et al. 2003) or the perceived power differentials that may silence discussion (Sherwin 1992, 2001; Bernhardt et al. 1998). A vital point to stress, however, is that while pregnant women may experience heightened anxiety, they are not ‘ill’ per se. They are generally well, competent, and physically able. Furthermore, they are not subject to the type of long term institutional care and control that Goodwin-Johansson (1988) suggests can undermine capacity to assert an equal relationship with their physician, although a lack of ongoing or established relationship may be equally disempowering. In the right environment, however, with appropriate encouragement and acceptance from health professionals, the principles of adult learning are highly

160

Chapter Eight

relevant and could be successfully applied in antenatal care to support informed consent. While the pre-conditions presented above are presented as discrete, in reality they are inseparably interwoven and interconnected. However, Knowles et al (2005) further claim that the strength of the andragogical model is its flexibility to embrace one, some, or all of these principles depending on the particular situation. They conclude that ‘what this means in practice is that we educators now have the responsibility to check out which assumptions are realistic in a given situation’ (Knowles, 1990, p.64). In guiding the transformation of learning in the clinical context of antenatal care many, if not all, of these principles are potentially relevant.

Conditions of Learning in the Clinical Context ‘… because real education as I had already discovered, meant things you really wanted to know rather than things other people thought you should know’ (Davies 1994, p.140).

The quote above from Robert Davies captures the underlying ethos of adult learning proposed and refined by Knowles (1980, 1989), which is that ‘real’ education for adult learners focuses on the motivation and need in the ‘learner’ rather than on the imposed goals of the ‘teacher’. In the clinical context of patient education, each of these learning considerations above will now be explored more closely through the voices and experiences of the participants of this study, in conjunction with the insights offered from other researchers in the field. Their relevance to patient learning in the context of preparing women to consider the social, ethical, and medical implications of prenatal screening will also be incorporated in this discussion. •

The ‘need’ to know

Adult learners are motivated by the ‘need’ to know. Thus, educational opportunities must be responsive to the particular needs of each individual. The need to know incorporates three distinct dimensions defined by Knowles et al (2005, p.184) as ‘the need to know how learning will be conducted, what learning will occur, and why learning is important’. When these three dimensions are incorporated into formalised adult learning programs, higher levels of success are achieved (ibid). Significantly, prior conversations negotiating these three areas provide a

Informed Consent and Patient Education in Clinical Care

161

vital opportunity to clarify joint expectations, to identify and address misconceptions, and to reveal the objectives of the learner allowing shared goals for learner and teacher, or patient and practitioner to be negotiated and progressed. The accounts offered by several mothers in this study supported the view that the particular types of information presumed to be ‘of value’ by society at large, or privileged by routine screening protocols, were not universally shared by mothers, many of whom did not see the ‘need’ for the specific information being offered. As Terri remarked, I definitely wasn’t prepared for other problems being flagged, and I really wasn’t interested in finding that out. Terri

Or Anne, It only occurred to me as I was undergoing the ultrasound that they were making measurements of different parts of the child’s anatomy and physique and then I realised, I was thinking, well why are they doing this? I thought they must be looking for things that were unusual or not right and only then it occurred to me that they were looking for abnormalities...I thought to myself well what if they do find something that doesn’t measure up to their expectations? I felt they got the information they needed and off you go. Anne

The need to clarify patient learning objectives is a critical preliminary element of informed consent, as patient objectives often differ substantially from those held by health care professionals. The potential clash of motivation, and the subsequent misunderstandings experienced and acknowledged by participants in this research, reinforce this point and are further supported in the literature, particularly with respect to risk assessment and disclosure (Liamputtong et al. 2003; Tankard - Reist 2005). Bridson, Hammond, Leach, & Chester (2003, p.1159) further note that the ‘focus on disclosure which has arisen from the need to tell patients about risk has meant not enough attention is given to patients’ objectives’. Consequently, they (ibid) argue, ‘taking the time to explore patients’ objectives not only improves consent procedures but may avoid some interventions altogether’. The delivery of prenatal screening may indeed have been avoided by Terri, Anne, Penny and Danielle had their objectives been more explicitly canvassed prior to screening. Terri for example explained,

162

Chapter Eight They told me the tests would tell us about the Down syndrome, neural tube defects would be covered, none of which was what my cousin’s child had, but they didn’t point that out to me – I did my own research, I found that out. I just got on the internet; it took 15 minutes, its amazing what you can find there. I thought I've done this for nothing. Terri

These four women were opposed to termination and were committed from the outset not to ‘act’ upon an unwelcome result, further stating an unwillingness to place their child at risk through amniocentesis. However, for some, their initial lack of insight into the underlying clinical purpose of screening, which they interpreted as part of a compulsory routine with the added bonus of ‘seeing the baby’, coupled with poor prior understanding of the ambiguity of a ‘screening’ result versus a more rigorous ‘diagnostic’ result, was never revealed. The anxiety and trauma subsequently experienced, particularly for those women with false positive results could have been significantly ameliorated by a prior discussion to decide whether this particular, incomplete knowledge was indeed genuinely valuable to them individually prior to screening. Once a need to know is jointly negotiated and established, patient willingness to pay attention is heightened, creating one of the fundamental precursors to learning. Learning is more effective when the learner pays attention to what is being presented; hence, paying attention is a critical precondition to learning (Gage and Berliner 1991; Cowan 1995; Knowles, Holton, and Swanson 2005). As our senses are constantly exposed to various inputs and sensations, we subconsciously and perpetually filter information to establish what is worthy of our attention. A key factor in determining which stimuli catch our attention is the personal motivation to learn which is significantly influenced by the perceived need to know. However, patient and practitioner presumptions about what ought to be known may differ significantly, and attention and foci may be overtly or covertly directed. The amount of attention paid may reflect to a degree the way such new knowledge is presented and by the significance clinical staff attach to it. For example, as previously flagged (Bernhardt et al. 1998), in the busy clinical environment many health practitioners fail to mention the moral aspects of prenatal screening as worthy of discussion. Such failure may imply a lack of importance and signal to the patient that attention is not warranted. Conversely, when such effort and emphasis is placed on risk assessment and disclosure, its importance may become unduly exaggerated. One genetic counsellor described the common scenario where the shortage of time limits pre-test discussion to the bare

Informed Consent and Patient Education in Clinical Care

163

technicalities, leaving little space to address any social or moral considerations. Well…in 15 minutes there’s not a lot of time…look it’s pretty much a technical discussion for good or bad…it’s seen as very much an education of this is what it is…these are the type results it will give you…you can’t say yes or no, but if you want to know for sure, you’ll have to have this or this…I can talk to you after the result and we’ll talk in more detail …is this something you want to have?...it very much is factual, yes, very rarely would it go off…(to the ethical). Genetic Counsellor 2

Similarly, when education preceding prenatal screening is glossed over or reduced to the dispensing of a pamphlet or list of conditions, as was Mary’s experience, a subtle cue about the value of such education as nonessential is sent. In a cultural norm where something is deemed unworthy of consideration, the amount of attention paid may be lessened (Winch 1998, p. 121), a situation that can significantly erode patient learning and undermine informed consent. Although the patients’ need to know is an important predictor of their engagement in, and commitment to, the learning process, this does not suggest that clinicians have no input or guidance in determining which clinically significant information patients should be alerted to. Indeed, their professional knowledge and clinical expertise provides a substantial and valuable contribution to the insights sought by women. The critical determinant is that a patient-centred dialogue takes place in which a mutual exchange of objectives is shared and jointly negotiated between practitioner and patient (Bridson et al. 2003). Sharing power with patients in this way may be liberating for practitioners, as shared power enhances shared responsibility, lightening the perceived onus on practitioners to present themselves as the authoritative source and arbiter of all relevant knowledge (Fisher, Dixon, and Honeyman 2005; Elwyn, Edwards, and Kinnersley 1999). •

Integrating Existing Experience.

As acknowledged throughout this work, moral frameworks are complex, thus, when individual women come to the process of learning they bring particular interpretive paradigms, both morally and educationally about how decisions will be reached. In the context of pregnancy the nature of learning and the nature of ethical decision making will encapsulate a broad spectrum of values and prior experiences. As

164

Chapter Eight

previously illustrated Leanne’s prior knowledge and experience of her colleague’s child with Down syndrome created a strong personalised sense of fear. Coupled with her experience of conceiving very easily, she developed a firm commitment to embrace all screening possibilities. Similarly, pre-existing faith-based convictions shaped the attitudes and behaviour of some other mothers as Anne explained, I believe that every child has intrinsic worth and I think that every child should be allowed to live. I said I didn’t want an amniocentesis, and explained that I would have this child whether there was something wrong or not. Anne

Or Terri, I had the attitude that if God had intended me to have a child like that then...so be it. Terri

Penny’s prior experience with a miscarriage and difficulties conceiving again featured strongly in her decision to reject amniocentesis, We had had a miscarriage three years earlier, and were told that our chances of falling pregnant again because of other issues between us were very low, so we said, even if there is a problem, we wouldn’t do anything about it. Penny.

Only one practitioner disclosed the influence of her personal faith in her assessments of the normative routines of prenatal screening saying, I don’t mention that I’m a Christian, I don’t actually mention my ethical viewpoint and I find it very frustrating that any opinions that can be seen to be linked to religion are then discredited and I think that’s really frustrating. Even although people who approve of abortion also have an ethical stance, their ethical stance is that they’re OK with it…they don’t see it as an issue…but because it’s not based on a religious belief, it’s not presented as moralistic. I struggle with that, I really struggle. General Practitioner 2.

As flagged by the GP above, the stance to promote screening and termination as an ethically unproblematic outcome equally reflects a preexisting positional bias and one which inevitably translates into presumptions of practice.

Informed Consent and Patient Education in Clinical Care

165

The above comments illuminate how the broad range of prior experiences of adult learners such as faith convictions, previous reproductive history, or perceptions of disability potentially impacts upon ethical decision making in numerous ways. They further illuminate the uniqueness and unpredictable influence of individual perspectives, a uniqueness that demands an individualised stance towards supporting adult patients in their learning journey, but one which the often predetermined educational habits within institutionalised health care do not accommodate (Goodwin-Johansson 1988). This inherited, traditional cultural toolkit of a predetermined transmissive model of learning seems so entrenched and unchallenged that perhaps as Bruner notes ‘its form is so ubiquitous that it is likely to be overlooked, in much the same way as we suppose the fish will be the last to discover water’(Bruner 1991, p.4). Knowles et al (2005, p.191) summarise the impact of previous understandings noting that they: • • • •

are the source of a wide and divergent array of individual interpretations and difference, may provide a diverse and rich learning resource, may bring inherent biases which may inhibit or support new learning, are inextricably linked to each person’s sense of self identity.

While such experiences may serve as a resource to draw upon, they also at times act as a gatekeeper or obstacle to the learning experience (ibid, p.195). As ‘knowledge is never point of view less’(Bruner 1991, p.3), the very nature of both educational and ethical inquiry significantly rests upon incorporating pre-existing knowledge, relationships, and values. As moral contexts are interpreted through a unique veil of history, relationships, and commitments, consequently we are always interpreting; always filtering and our interpretations are always linked to past experience and understandings which lay the foundations for future interpretations. Hence, actively seeking and interpreting prior knowledge is essential to making the necessary connection to current considerations. •

The Importance of Prior Learning in Constructing New Knowledge

166

Chapter Eight

From a cognitive perspective, educational philosophers and theorists have long acknowledged that when new information is presented in a way that is disconnected from prior understandings, the creation of meaning upon which reflective understanding is built is severely stifled (Woods and Barrow 1975; Knowles 1990; Dewey 1938). Thus, the construction of meaning to unfamiliar ideas is essentially mediated through the use of familiar terms (Woods and Barrow 1975). Eliciting existing beliefs is, therefore, a crucial first step in any educational process as presenting content out of context from past experience, or in isolation from related knowledge, hinders the necessary creation of links that create the reflective understanding sought by the ethical standard of informed consent. Indeed, if these links to existing knowledge are not made, shallow, surface understanding may result (Winch 1998; Gage and Berliner 1991), potentially compromising informed consent. Educationalists acknowledge the clear need to establish current understanding before expanding with new concepts, likening the process to giving directions to a person who is lost. The fundamental question before giving directions would (and should) be ‘where are you now?’ Frequently, the answer to this question of where a woman’s knowledge is now prior to embarking upon prenatal screening is neither sought nor considered explicitly relevant by existing clinical education protocols. This crucial ability to attach meaning to new information mediated through existing knowledge was succinctly demonstrated by Petersen (1966 cited by Gage and Berliner 1991, p285). During his 1966 study into the mechanisms of short term and working memory, respondents were asked to recite meaningless combinations of three letters. When repeated immediately, 88% were successfully recalled. However, when rehearsal was prevented for a mere 18 seconds, the success rate dropped to only 15%. Peterson hypoworked that, as the nonsensical letter combinations had no meaning or familiar code, they were easily forgotten. Their lack of meaning suggested that no associations to existing reference points could be formed to aid retention. Likewise, for many women the terms associated with the prenatal screening tests they are about to undergo are also unfamiliar, even nonsensical, a reality acknowledged by the following practitioners who remarked, I see that as my role in helping them interpret, what is essentially, a foreign language, that’s how I see it…and it is…really. Genetic Counsellor 2 Even those words…‘nuchal translucency’ it’s not something that’s been around for a long time, so measuring the thickness of the skin at the back

Informed Consent and Patient Education in Clinical Care

167

of the neck between 10-12 weeks, there’s not a lot of knowledge, its not something their mothers can tell them about, because they didn’t have it. Clinical Geneticist

If no previous point of reference exists for terms such as nuchal translucency, trisomies, and amniocentesis, the opportunity to learn is made harder as meaningful links for new information to existing schema of understanding must be built. The creation of these mental maps takes time to develop and in the current clinical scenario time is frequently scarce. Indeed ‘lack of time’ is often invoked as an explanation for poor patient/carer relationships, as inadequate communication creates low levels of satisfaction (Belle-Brown, Stewart, and Ryan 2003; Bub 2004; Duberstein et al. 2007). In a recent recommendation that shows scarce understanding of the educational process, as opposed to the regurgitation of information, researchers in the UK (Dormandy et al. 2002) have recently advocated for screening protocols in which prenatal testing information is dispensed, an immediate response elicited, and testing performed during the same hospital visit. This recommendation has been suggested on the grounds of streamlining administrative processes and enhancing informed consent by reducing practical barriers to testing. However, as highlighted above in the simple research undertaken by Peterson, the depth of the knowledge and reflective understanding on which this immediate stimulus/response type of ‘informed’ consent is elicited must be queried. While it may be administratively appropriate to elicit an immediate response for simple interventions with low level consequences, the complexity and gravity of the potential outcomes of prenatal screening demand a fuller educational commitment. Perhaps as Ken Bain (2004, p.41) has described, the type of shallow learning created by the immediate stimulus/response advocated above could be described as ‘bulimic’ in the sense that a ‘learner’ is fed ‘facts’ which may be absorbed for a specific narrow task, regurgitated in a limited context then purged to make way for the next onslaught of data. The depth of reflective understanding such ‘education’ creates seems questionable as an ethical foundation when preparing women embarking upon the ethically complex practice of prenatal screening. While this mode of informing may meet the legal obligation of the informer to give information, it fails in an ethical sense to promote the critical understanding required for considered moral decision making. From a clinical education perspective, if we are to achieve the knowledge development that is essential to empower women in making

168

Chapter Eight

genuine and active decisions that are coherent with their moral frameworks, we must build strategies and opportunities that incorporate the selective filtering process to accommodate the unique and highly individual positions held. As Goodwin–Johansson (1988) notes, flexibility about the quantity and type of information sought is required. Time and commitment to clarify and to explore the objectives of screening to the patient are also critical. Responding to existing frameworks of interpretations is a further critical precursor to successful learning; hence, individual negotiation of which questions are to be answered must form an integral and foundational part of ethically responsible patient education. It is acknowledged again, however, that the requirement to ‘inform’ in the legal sense of informed consent, and the requirement to ensure understanding in the ethical sense are two different standards of engagement. Informing for legal purposes is judged upon the action of the informer, while informing for understanding in the ethical sense focuses upon the needs and comprehension of the learner. Any patient-centred care must hold the latter as its benchmark. •

The Physical Environment and Patient Practitioner Relationships

Knowles et al (2005) advocate that the physical learning environment should be comfortable, free from noise and distractions, and conducive to positive relational interaction between the teacher/facilitator and learner. Ideally, the adult learner should perceive the educational relationship as one of mutual trust and respect in a collaborative, cooperative partnership. However, in the clinical setting, the dominant aim is primarily one of identifying medical problems and providing physical, medical treatment. The fundamental purpose (rightly or wrongly) is not to promote the learning required to become informed for the purpose of giving ethically robust consent. Hence, a significant clash of purpose and culture may exist in this context. As a place where the isolation and treatment of medical ‘problems’ is paramount, it is perhaps understandable that the creation of a reflective learning space for patients has taken on a lower priority. Furthermore, the practical ramifications of rejecting the overly paternalistic models of the past, and of embracing patient-centred collaborative partnerships are a comparatively recent shift in medical thinking. Hence, the finer details of what this relatively new patientcentred dynamic looks like clinically are still emerging and evolving (Elwyn et al. 2003; Elwyn, Edwards, and Kinnersley 1999; Fisher, Dixon, and Honeyman 2005; Cegala, Street, and Clinch 2007). Perhaps it may evolve to reflect the description given by Mezirow (1996, p.171) below,

Informed Consent and Patient Education in Clinical Care

169

‘Adult education is predicated upon creating free space for reflection and discourse and a reduction of the power differential between educator and learner…Ideally (and this is characteristic of adult education), the relationship of educator to learner is one of subject to subject, a peer relationship, rather than one of subject to object, not uncommon in the education of children’.

When the clash of purpose between the moral obligation to educate and the clinical desire to treat is combined with the urgent and often pressurised environment, tight resourcing, time restrictions, and a perceived need for quick decisions, giving due support to a learning process that nurtures the critical understanding necessary for autonomous choices to be made becomes seriously compromised. However, with the potential consequences of poor understanding and low levels of informed consent being ongoing psychological distress, anxiety and potential feelings of depression (Stewart et al. 2000, p.804), a practical commitment to supporting the right environment which facilitates and supports patients’ understanding seems long overdue. In terms of the physical barriers to learning, the context of busy clinics with their inherent time pressures, stretched resources and overcommitted staff can present a distracting environment, one in which attention is focused purely on the immediate medical outcomes, while the educational and ethical outcomes take secondary priority. Such time constraints, as Bruner (2004) further notes, have worrying consequences inhibiting reflection and learning, ‘One of the great triumphs of learning is to get things organised in your head in a way that permits you to know more than you ‘ought’ to. And this takes reflection, brooding about what it is that you know. The enemy of reflection is the breakneck pace…’ (Bruner, 2004, p.98).

For the participants of this study, several factors were raised as environmental impediments to learning in the clinical environment, most notably that of limited time as the following comments illustrate. From the mothers, When I have to wait I get the impression that the staff are very busy, they have a lot of patients to see therefore it becomes a bit like a factory and unfortunately that’s just the nature of the situation…I think when you have been waiting to see a doctor and you finally have your chance, you often don’t ask questions because you know they are so busy. Anne.

170

Chapter Eight I do think the communication issues are a bit of a problem there. It’s hard to say, I think it comes down to the speed of service, they are seeing so many women, and they don’t have the time. Terri.

Terri further explained that the rushed process and physical environment denied her ‘time to think’, I think that each parent should get, on a piece of paper, so they can read, re-read, proof read, information about the tests, what are the risks, what could the outcomes be, what do they test for, what don’t they test for. People need to be able to go home with that, rather than be put on the spot to make an instant decision…That’s what I felt was necessary. These people were saying to me, you need to make a decision, right now; they didn’t want to give me time to think. Terri

Or the Down syndrome support group volunteer who remarked, Women often don’t even know there is support (after receiving a prenatal diagnosis); maybe if women were shown the big picture and offered support they might choose to slow down, take their time and think about things. I think it’s done too quickly, women are very quickly rushed off to more tests, genetic counsellor, and usually termination, I think it’s done without enough time to sit and talk with partners and family, and I feel women suffer from the rush. Down syndrome Support Group Volunteer

From practitioners, the following revelations about the impact of time pressure which may compromise the quality of clinical care were offered: Inside this particular hospital, you know they don’t have an hour to talk with patients, in fact, they don’t even have 20 minutes to talk with a patient, they have 10 minutes. How do you develop a rapport in 10 minutes? How do you determine what this lady’s thoughts are and steer your thoughts in line with hers? You don’t…I mean there are two opposing thoughts coming in and if your belief is we want this baby out of here in a timely manner in a way that’s convenient to us, let alone her… then who cares? Midwife 2. I think we get so busy and carried away with time, we just say “here, can you sign this” and yes, a lot of trust is put in us, and people hope we’ll do the right thing by them. Midwife 4 If someone says at the end of (the initial appointment) ‘so tell me about screening’ I don’t want to give them a quick answer…I will tend to have a set ‘spiel’ about that, so I wouldn’t rush that conversation…so I might decide to just do it and run late…or I may ask them to come back, it’s a

Informed Consent and Patient Education in Clinical Care

171

big area and there’s a lot to consider…I wouldn’t just say ‘oh yes, there’s a few tests, here’s the form’ but I know there are GPs out there who would do that. General Practitioner 2 GP’s are a bit the same; they are running that day to day stuff – how much time do they really have to teach women everything – they really don’t…they really rely on women to find out information and certainly a lot of it goes by word of mouth, absolutely and that’s where the myths perpetuate. Midwife 2

Lack of time and less than ideal relationships between patient and practitioner often combine to create poor communication habits, which Braddock (2002, p.344) describes as a ‘one way conversation, without meaningful participation by patients’. Stewart et al (2003) further identify time and poor communication as contributors to the souring of relationship that leads to the loss of important ‘teachable moments’. Relationships between practitioners and patients and their influence on communication were a further area of concern which drew comment from participants, some positive, some negative. From the mothers: Through the pregnancy…I wouldn’t say we were a team…but I felt that the obstetrician was on our side…it was more of a partnership. (I: An equal partnership?) No…in that he was the doctor and we’re just the patient… I don’t think I would call that equal…because he still gets to make the decisions. Penny

Or Terri, (I: How would you describe your relationship with your doctors?) What relationship?…definitely not open and communicative. He just told me what I needed to know, but, well, doctors are busy. Terri

Elizabeth relayed an example of what she considered to be poor communication with an Obstetric Consultant at a large public hospital, describing the experience as a ‘Farside moment’. The depths of the chasm of miscommunication lead Elizabeth to flippantly dismiss this consultant’s professional ability. The consultant at the hospital read through my notes and noticed I had seen a genetic counsellor, she asked why – and I explained that I had another child – in the pram beside me – who was born with trisomy 21. …“How do you know?” she asked me. You know it was like a ‘Farside’ moment, with an obstetric consultant who doesn’t believe me, how did I know my child

172

Chapter Eight had Down syndrome, and I just pointed to Grace, as if to say “hello!!”. I thought she’s obviously stupid. Elizabeth

Poor communication in the delivery of ‘bad’ news also drew comment from some mothers, who noted The way the paediatrician said, ‘I’ll give you a ring when the results come back” And he just rang one day, four months later and said ‘oh yes, that test result came back, yes it’s positive for (x), if you want to speak to a geneticist, just ring me tomorrow and let me know”. And that was how he spoke to me…and I was dumbfounded…standing there going uh!!. And because I was dumbfounded I couldn’t ask any questions…and ‘ring tomorrow’, what was that all about? That to me was a very inappropriate way. I thought it should have been, please come into the office; we’d like to discuss the results…That should have been the minimum way of telling someone their child had a particular condition. Penny.

And Mary Well the way (the nuchal result) was presented to me was like being hit by a train…there needs to be more discussion about what the options are…Mary

On the positive side, many mothers had strong pre-existing relationships, predominantly with their GP’s, based on trust in their physician’s expertise. Significantly though, this did not necessarily translate into the recommended participation in a collaborative partnership or the mutual defining of goals with their carers. Most communication problems encountered occurred between external specialists with whom women had not developed a good therapeutic relationship. Significant research efforts have been invested to assess and critique physician obligations in clinical communication (Hulsman et al. 1999; Hulsman, Visser, and Makoul 2005; Anderson et al. 1989), however, comparatively little research has been directed towards the influence of patient communication on the medical conversation (Cegala and Lenzmeier Broz 2003). While the communication experience is significantly guided by the attitude and orientation of the physician, importantly the communication dynamic is also appreciably co-created by the patient (Cegala, Street, and Clinch 2007). Hence, patient behaviour, expectations, and level of participation can exert a positive influence in directing how clinical conversations unfold. As Cegala, Street and Clinch (ibid, p.177) observed:

Informed Consent and Patient Education in Clinical Care

173

‘when communicating with high participation patients, physicians provided significantly more information overall, more information in response to patients’ questions and volunteered more information than when interacting with low participation patients’.

Cegala et al (ibid) further concluded that ‘high participation patients’ communication style promotes better alignment of patients’ and physicians’ goals and agendas’, a critical precondition of successful adult learning. The desire for increased patient responsibility and participation was also voiced by several practitioners, illustrated in the obstetrician’s comment: I guess from the word go, and this applies to every aspect of medicine if people really understood what they were having the test for, why they’re getting things done, what we’re trying to really achieve, and understanding these are really optional things…if they questioned a bit more…and interacted. To some degree there has got to be some motivation to self educate by the patient, some recognition of the importance of their own health…but we can’t presume to be paternalistic about it either… Obstetrician

High participation may positively influence communication; however, barriers such as feelings of intimidation when communicating with practitioners, perceived power imbalances, or patient fears that being assertive may endanger the relationship have been observed. These fears often translate into a difficulty with asking questions (Godolphin 2003; Godolphin, Towle, and McKendry 2001; Towle et al. 2003; Towle and Godolphin 1999). However, as communication patterns which encourage patient questions create stronger patient involvement, lower levels of anxiety, fewer subsequent visits and referrals, and strengthened educational outcomes, creating the right conditions to encourage active participation is highly desirable (Cegala et al. 2004; Post, Cegala, and Miser 2002; Cegala and Lenzmeier Broz 2003; Stewart 1995; Stewart et al. 2003; Stewart et al. 2000; Weston 2001). The alignment of goals and firm commitment to supporting patient questioning and promoting participation is needed as it is a vital predictor of successful adult learning and clinical education. Finally, many of the practitioners interviewed displayed genuine commitment and behaviours that would foster strong educational and therapeutic relationships, which promoted participation and valued good communication. Although most stopped short of advocating genuine sharing of the therapeutic goals, the following comments provide

174

Chapter Eight

encouragement that, amongst this cohort of practitioners, there was a desire to promote good learning outcomes for patients. My personal opinion, and this is purely a personal opinion is that we have come a long way in understanding and communication with women and understanding how they are feeling, this pregnancy is the most important pregnancy ever because it’s their baby so...In general I think there is a bit more understanding and respect. Midwife 3 Being able to spend some time with them, ask them appropriate open questions to ascertain their understandings of not only of the information that I’ve given verbally, but also the written information that I would have given too…You bring them back and talk to them again…and that’s the luxury you have in general practice that hospital don’t have…the luxury in general practice in terms of prenatal screening is that if they walk out of the room and they are still not sure, you encourage them to come back and talk about it and make sure they know the door is open…General Practitioner 1 Although everyone is booked to a timeframe of half an hour…some go over, but I think our doctors are very, very aware that they must…the woman can’t go home without a good understanding…there’s always that pressure, and sometimes it’s hard to know what the understandings are…you know. Midwife 1 I try not to give too much information and expect them to take it all away and read it all and act upon it. It is routine, having said that, to do a post clinic letter, so that’s usually about 1-1 ½ pages of content, usually summarising the important content of what took place. (I: Is this so that they have something concrete to refer back to?) Yes, so that letter is primarily the way that that happens, its not there immediately from the consultation because there’s a time delay from dictation to transcription to sending it out, but…it serves as a reminder. It’s not necessarily a bad thing that there is a delay before they get that letter because it helps to reinforce what was said at the time…. I really don’t know if people read those letters, certainly many do, many keep them, and many don’t…So, once they’ve got it, it’s theirs to show other family members, give to other health professionals as they see fit…the issue of privacy and consent is in their hands. Clinical Geneticist.

•

Mutually Defined Learning Goals and their Role in Fostering Shared Responsibility and Commitment

Successful adult learning, Knowles et al (2005) claim, is enhanced when the goals of learning are mutually defined by teacher and learner,

Informed Consent and Patient Education in Clinical Care

175

and ultimately embraced as the learner’s goals. Once a sense of ownership in the learner is established, an elevated sense of responsibility and commitment to genuinely pursue these goals is formed. Additional benefits are increased feelings of competence, further re-enforcing the pursuit of learning as a positive experience. Again, the mutual clarification of goals at this stage depends upon effective dialogue as supporting the ethical importance of dialogue and narrative in collaboratively constructing a mutually respectful, appreciative, and hermeneutically aware relationship. Much attention has been focussed on poor patient knowledge as an obstacle to informed consent and defining shared goals, and as mentioned above, several programs have been devised to teach patients how to better interact with practitioners and to improve their health literacy all of which are important predictors of effective learning (Towle et al. 2003; Towle and Godolphin 1999; Post, Cegala, and Miser 2002; Marteau et al. 1992). However, another major impediment to informed consent and good educational outcomes for patients is that of poor practitioner knowledge about the details and potential outcomes of screening. Several studies have revealed that some medical staff may lack the presumed knowledge or skill required often omitting pertinent information for patients about prenatal tests because they may lack it themselves (Tyzack and Wallace 2003; Sadler 1997). Clinical staff have also been observed to misjudge how much information patients need or want and are frequently driven by the fear that too much information will create anxiety in their patients (Marteau et al. 1992, p.138), a view echoed by some practitioners in this cohort: A lot of information is not given because it feels extraneous at the time, like it’s an extra burden, and with a very low chance of it happening why would you talk about all the potential possibilities…unless you’re dealing with the reality of what’s there…I think its just time, economics and emotional burden…why would you worry someone about something that’s highly unlikely. Genetic Counsellor 1 People are worried about exacerbating this anxiety by mentioning the possibility of an abnormality, so we don’t actually tell people, well, your risk of miscarriage in the first 8 weeks is 15%, between 12-20 weeks it this much and so on…the chance of stillbirth after 20 weeks is 1 % and so on ….You don’t tell women those things…and likewise mentioning anything about abnormalities, you don’t particularly mention to people that well…5% of all babies can be born with something because you don’t want them to worry. So, that’s one of the barriers, not to worry the

176

Chapter Eight pregnant woman so much and so that effects how much you actually talk about. Obstetrician

Poor practitioner knowledge may also contribute to an excessive enthusiasm to test as lack of confidence may encourage the exercising of a disproportionate amount of caution. Tyzack and Wallace (2003) observed that less than 10% of the practitioners they surveyed about pre-test counselling for Down syndrome screening provided accurate information on the characteristics of screening tests, concluding that the majority were not sufficiently informed to provide optimum counselling to patients. Noting the obvious link between practitioner knowledge and informed patients, they made the recommendation that ‘ensuring that care providers are themselves well informed is therefore fundamental to delivering a quality screening program’ (ibid, p.220). Concerns about poor practitioner knowledge or proficiency, and the inevitable impact upon the development of appropriate understanding in patients was certainly raised as a factor by many practitioners in this cohort, as evidenced in the following comments, GP knowledge is often mediocre as to the specifics of the exam, so they will not usually explain things like false positives etc. Obstetrician I think that one of the reasons why shared care is somewhat fraught is that many people are giving shared care that have no ability whatsoever to determine the lie of a foetus or presentation…I happen to know that there are not too many GP’s, in my opinion, well qualified and able in my opinion to comment about antenatal care. General Practitioner 1 Some of them (GP’s) didn’t know what (the 12 week scan) was, they really quite frankly didn’t know what they were looking at and therefore they were ordering the test, putting their name to it and not knowing really how to interpret results, what was going to come from it, even although the safety net of course was that anything abnormal detected here would be directly referred to tertiary care here and the GP was notified. Midwife 3 Some GP’s know this information really well, but it’s really variable in terms of that, and also how many doctors organise the blood tests as well…so…it’s very variable…and it’s frustrating because it’s easy information for GP’s to give and I know that there have been many information sessions aimed at GPs on the whole screening issue, they should perhaps be passing on more knowledge that what sometimes we see. Genetic Counsellor 2

Informed Consent and Patient Education in Clinical Care

177

I do see that GP’s are having a lot of assumptions made about their knowledge...they are doctors, therefore they should know everything…without really, really giving them the good education they require...this is something new that’s come in after a lot of these GP’s began practice…and they have never ever had to deal with it…I guess some skills wouldn’t be there in the same way as people who have been brought up, you know newer GP’s who have learned about this screening right from the beginning of medical school…many GPs have never had to deal with it before, and even within nursing, you don’t put people into areas to do things that they don’t have the skills to do, I certainly wouldn’t want to be put in cardiology…the assumption is made from the outset that they know it, they do it, they are GP’s, they just do it…the assumption is made I guess by the policy makers in the organisation…(we) need to assess what sort of education is needed…how is it going…and pick up on any comments or complaints that come in. How do you reach the ones that you need to reach because there are a lot who do know? How do you find the ones who don’t know about it? There’s the cost factor too…you can only send out so much stuff…and the time to prepare so much information…it’s a difficult task. Midwife 3

Hence, before mutually defined learning goals can be negotiated, practitioners must also be supported and equipped to embrace their critical ethical role as facilitators of patient education. •

Defining progress and success

The final consideration of adult learning suggested by Knowles et al (2005) is that educational opportunities should be designed in such a way that a sense of progress and success is created. While most of the insights offered by Knowles et al (ibid) in this phase centre upon ‘evaluation’ measures of more formalised learning, in the clinical context of preparing women to give informed consent to medical interventions, the relevance of this final phase is not instantly obvious as, clearly, there are no external assessments to ‘pass’ or skill criteria to fulfil. There are, however, internal criteria of success to be met. If the purpose of the learning is to act as an ethical safeguard, pre-arming and equipping women with the relevant knowledge to make decisions in keeping with their individual moral frameworks, some of the trauma and anxiety created by the common misunderstandings recounted by the cohort of this study may have been averted. As high levels of informed consent are associated with greater acceptance of both positive and negative outcomes, success and progress in this context may be realised in better coping mechanisms and psychological preparedness to step up to the events that unfold.

178

Chapter Eight

The Shared Ethical Orientation of ‘Patient-Centred Medicine’ and Adult Learning If we value informed consent as a safeguard to the ethical integrity of medical interventions, we must seriously value the educational process through which patients and practitioners become informed. The preconditions supporting adult learning suggested by Knowles (1980) outlined above, raise the practical question of how this andragogical educational framework may be integrated into clinical care. Many of the proposed conditions may appear antithetical to the medical environment, such as genuine shared decision making, negotiating patient objectives even when they stand in conflict to conventional medical wisdom, or embracing a particularised, rather than generalised, view of unique individual contexts and interpretive frameworks. The emerging trend towards “Patient-Centred Medicine” may provide a fitting platform for change. Patient-centred medicine positions the patient as an equal partner in health care decisions and thus provides a workable foundation on which to construct adult centred learning engagements. This approach is already gathering considerable momentum and is increasingly associated with improved health outcomes on many levels such as improved patient and practitioner satisfaction, better health outcomes with fewer referrals, and a reduction in the number of malpractice suits (Stewart et al. 2003; Weston 2001; Stewart et al. 2000). Closer examination reveals that the core values of patient-centred care of respect for relationship and a firm commitment to incorporate the patient (learner) perspective via genuine communication mirror the foundational elements of adult learner-centred educational theory. The common feature of both is their shared ontological orientation, which further resonates with the ontological insights of a phenomenological approach to ethics as outlined in Chapter Two. Recognising the ‘self’ as related, embedded, historicised, and dialogically and narratively constructed, the patient-centred approach actively seeks to incorporate prior patient knowledge, existing interpretive frameworks, and individual values and beliefs, encouraging physicians to respond to the uniqueness of individual patients (Stewart et al. 2000, p. 804). Hence, the growing influence of Patient-Centred Care in medicine can provide a cohesive framework that is ethically, educationally and therapeutically appropriate in addressing the observed ethical shortcomings that flow from the

Informed Consent and Patient Education in Clinical Care

179

inadequate transmissive educational paradigm currently adopted. Like the andragogical model, a core aspect of ‘patient-centred care’ is the need to find ‘common ground’, to establish shared goals, and to build secure relationships as a basis for a constructive therapeutic partnership. While Stewart et al (2003) note that establishing this relationship may be initially time consuming, once a working relationship is formed the time spent on subsequent visits may be reduced as the trust and confidence developed can expedite subsequent clinical decision making. As the potential consequences of not developing secure clinical partnerships with patients are insecurity, anxiety or depression that may lead to further intervention at a later date (Stewart et al. 2000, p.804), the potential ethical, clinical, and financial benefits that may flow are clear. Benefits of robust informed consent mentioned earlier include higher levels of patient and physician satisfaction, fewer referrals, and a decreased number of medical malpractice suits, suggesting that the potential ethical benefits flowing from support and facilitation of patient learning as an integral part of the informed consent process may produce very practical dividends.

Transforming Patient Learning in Clinical Care A number of practical challenges flow from accepting the argument that ethical practice, through informed consent, is inextricably linked to patient education. Explanations offered into the developmental requirements of adult learners provide valuable insights to support the ethical imperative to educate patients in clinical care. Points for further consideration include how such educational understandings may be incorporated into practice given the existing time constraints. Given the identification from this research of blurred accountability for informing, important consideration of who is accountable for patient education must be addressed; reflections on how understanding can be assessed or whether patient learning should be routinely assessed will also need to be answered. The importance of updating and supporting practitioners’ technical knowledge in addition to raising their awareness of the requirements of the frequently underestimated role of patient educator must also be proactively addressed. Finding ways to encourage patients to improve their own health literacy and become more participative in their clinical education forms another critical part of the equation. All of these facets of developing more ethically robust care warrant further attention once the link to patient education is accepted as ethically crucial, rather

180

Chapter Eight

than as an optional extra undertaken only by highly motivated practitioners or patients. Thus, the area of clinical practice is ripe with possibilities for further empirical exploration of these issues. Protocols already exist for assessing levels of informed consent (Braddock 2002; Braddock et al. 1999; Braddock et al. 1997), for assessing communication styles, and for forging more successful patient collaboration and participation (Cegala et al. 2004; Cegala, Street, and Clinch 2007; Post, Cegala, and Miser 2002). Therefore, the effects of adopting different educational strategies into clinical regimes could be monitored and evaluated, forming the foundation of evidencebased, time efficient, clinically effective educational practice. Such ‘evidence-based’ research may then illuminate how educationally sound frameworks may be implemented to support the ethical outcomes of everyday practice. We can predict that increased technological sophistication and intervention will require increasingly complex understanding. We can also predict, based on past experience, that the landscape of prenatal screening is moving inevitably and irrevocably towards more medicalised, technology driven pregnancies. Given these predictions, it is clear that existing protocols for educating and building understanding, which are already inadequate, will become even more unsatisfactory. Therefore, actively embracing a transformative educational response which elevates the importance of learning and knowledge development in the context of prenatal screening is crucial to securing robust ethical care within the institutional medical setting into the future.

Chapter Summary As previously flagged, the crucial ethical difference between consent and ‘informed’ consent is the incorporation of some form of education or learning opportunity, with the transfer and construction of the appropriate knowledge and understanding prior to accepting any medical intervention. “Informed consent” is, therefore, given from a position of reflective understanding after careful consideration and deliberation of the central facts relevant to each individual. Hence, the moral integrity of informed consent in clinical care is inextricably linked to patient education.

Informed Consent and Patient Education in Clinical Care

181

The experiences of most mothers in this cohort illustrated that current institutional approaches to patient education, when they exist at all, are often approached as an episodic or finite event, considered for the express purpose of attaining a ‘one off’ agreement or consent. Practitioners presented a similar story, acknowledging the problematic and often inadequate informed consent protocols. While many practitioners illustrated sound educational strategies in their own practice, they recognised that ethically appropriate levels of informing may not be the universal norm. In terms of strengthening education processes within clinical care, the work of educationalist Malcolm Knowles (1970, 1990; Knowles et al 2005) may provide a workable template for reform, through emphasising the different considerations and requirements of successful adult education. Knowles (ibid) recognises that education is an ongoing process firmly embedded in time, history, relationships, personal, and institutional contexts and the prior understandings held by the learner. Approaching informed consent as an administrative ‘event’ may create a fundamental tension in how patient education is approached clinically, and may stifle the application of appropriate educational strategies. Knowles’s educational model is founded on the belief that the developmental capacities of adult learners demands developmentally responsive educational strategies. While transmissive and compartmentalised ‘instrumentalist’ views of education have significantly fallen from vogue among educators, being replaced by more learner-centred strategies, the educational strategies in the health care setting as described and experienced by many of participants of this cohort reflect authoritative and transmissive modes of informing. For informed consent to be supported clinically, these must be replaced with more adult learner centred strategies that embrace and acknowledge the embedded, relational, dialogical, and culturally and historically situated nature of learning, from an adult perspective for patient and practitioner. The six pre-conditions that support effective adult learning suggested by Knowles et al (2005) discussed earlier may provide a workable template to increase awareness and foster such reform. Learning for the purpose of consenting to clinical interventions must be recognised as more complex than the habitual dispensing or disclosure of disconnected information. Rather it should be viewed as an active and mutually enriching partnership, nurtured in a supportive, relational

182

Chapter Eight

environment that is anchored to prior knowledge and existing moral frameworks. While some of the conditions above may seem beyond our reach, in accepting the link of ethical practice to patient education, we are obliged to challenge current models of resourcing and staffing and to contest many of the overarching and unjust financial constraints imposed by the managerial focus on business models of care delivery that limit our capacity to fulfil the fundamental ethical obligation to educate. Although not explicitly recognised, the emerging clinical framework of ‘patientcentred medicine’ shares a strong philosophical orientation both with the phenomenological account of ontology and the andragogical educational framework proposed by Knowles. The shared ontological basis of these three areas, the patient-centred model of care, the phenomenological understanding of the ethical and the andragogical framework of education collectively promote the ethical intentions of informed consent. As the practice of prenatal screening is shaped by individual and organisational factors, the ethical and educational transformation of practice will ultimately depend upon the moral integrity and orientation of the institutions we construct, in addition to the values, capacities and conduct of those individuals who function within them. The following chapter will explore potential areas of transformation, premised on the understanding that transformation must occur at both the individual and the institutional levels simultaneously, as in reality, they are inseparably enmeshed with each partially defining, enabling, and/or constraining the other.

CHAPTER NINE TRANSFORMING PRACTICE

‘We need to think less about doctrine and principles and the rules to govern behaviour, more about education and institutions – and what sort of people we produce’(Kass 2002, p.73).

Introduction The experiences of participants explored throughout this work illustrate that voluntary, understood, and informed consent was not routinely achieved in practice for this cohort of mothers. In line with observations made elsewhere, the commonly experienced clinical conditions of prenatal screening created moral harm to some, imposing avoidable distress, alienation, and anxiety. Furthermore, to mothers who unconditionally valued their expected child, the negative attitudes towards children with potential disabilities inherent within screening protocols caused deep affront. As discussed earlier, some literature suggests that the potentially avoidable anguish and suffering created were simultaneously generated and alleviated in the self perpetuating dynamic of testing. While small increases in anxiety levels may be beneficial, illustrating appropriate levels of engagement and attention (Stephenson 2006; Kleinveld et al. 2006), a deep and sometimes ongoing sense of distress was articulated by some women in this cohort. This distress has been observed and described in other studies as akin to a ‘major depressive episode’ (Leithner et al. 2004) or ‘serious psychological harm’(Goel et al. 1998). Cristofalo et al (2006) have noted that the sense of loss and worry reported by some women can remain long after testing ceases1. The long term impact of such psychological distress remains under researched suggesting a need for additional research in this area (Boyd, Chamberlain, and Hicks 1998, p.1581). 1

Almost 30% of women in Cristofalo et al’s 2006 study imagined future health implications for their child long after they had been ‘cleared’ following the revelation of benign soft markers (Cristofalo et al. 2006).

184

Chapter Nine

While practitioners in this cohort universally expressed that they valued informed consent in their patients, most struggled with their sense that patients often remained ill equipped or under-informed about the purpose and potential outcomes of screening. Blurred responsibility among practitioners for the provision of care and education, mothers’ unquestioning compliance with misunderstood routines, and poor basic knowledge of the tests and their value or relevance by practitioners and mothers alike, were observed in this research. Additionally, the procedural pressures of routine testing obfuscated ‘voluntariness’ and the promotion of the presumed benefits of testing further collided to undermine some women’s capacity to give their informed consent. For practitioners, these aspects similarly constrained their capacity to adequately inform. Although this limited research makes no claim that the experiences of individual participants are representative or generalisable to the whole population, if the accounts offered and outlined throughout this work are indeed typical, and this may be determined by extended research, the routine everyday medical intervention of prenatal screening, as described and experienced by the participants here, suggests a local practice in need of ethical transformation. Education plays a critical role in transforming some of these entrenched practices. It was previously suggested that, as the moral integrity of informed consent rested upon the possession of reflective understanding prior to consenting, patient education was ethically essential. It was also proposed that robust andragogical approaches to adult learning (Knowles 1990; Knowles, Holton, and Swanson 2005; Knowles 1970) provided a potentially workable template from which to facilitate such education clinically. However, while appropriate education may be a critical factor in the ethical deliberations of individuals, underlying systemic problems and contextual biases of institutionalised medical practice tacitly remain. Therefore, while supporting patient autonomy through education is a valuable and important ethical aim that should be faithfully pursued, ultimately, all decisions are contextually constrained, relationally embedded, and communally moderated in the framework of broader societal customs and structures of medical practice. Indeed, it is often the tension between individual moral frameworks and communally endorsed social and moral frameworks that ultimately contribute to the moral distress experienced by individuals. These communal frameworks include the master narratives of ‘good’ mothering (good mothers test), the discourse of tragedy surrounding disability (to be avoided at all cost), the elevation of rationality as the privileged ethical

Transforming Practice

185

arbiter (it is irrational not to ‘prevent’ disability) and the socially embraced perfectibility doctrine of technology (science both defines and delivers us from any unacceptable). We cannot compartmentalise and segregate educational strategies and outcomes from the multiple layers of embeddedness in the social, philosophical, cultural, personal, and institutional contexts of medical practice in which health care is situated. As noted earlier, Toulmin (1990, p.201) remarks, ‘We may temporarily shelve the contexts of our problems, but, eventually, their complete resolution obliges us to put these calculations back into their larger human frame, with all its concrete features and complexities’.

Accordingly the ethical and educational transformation of practice will ultimately depend jointly upon the moral integrity and orientation of the institutions we construct, in addition to the values, capacities and conduct of those individuals who function within them. These two potential areas of transformation, the institutional and the individual, will be considered in more depth.

Transforming Institutions The transformation of institutional structures within which prenatal care is situated may be reformed in three key structural areas these being (1) the institutional orientation and organisational infrastructure with respect to ethics; (2) the promotion of institutional reform in areas of internal and external policy direction, including overarching legal frameworks and production/business models of care; and finally (3) by actively questioning the ideologically driven faith in science and technology that values and promotes technological intervention. Simultaneously addressing these areas may lay the foundation for a responsive ethical environment in which personal capacities of staff and patients may be built, and in which the practical realisation and support of the ethical may be genuinely facilitated.

Transforming Institutional Approaches to Ethics ‘Medicine being simultaneously the scientific and humanistic study of man (sic) cannot escape being based in an explicit or implicit philosophy of human nature’(Pellegrino 2003, p.10).

186

Chapter Nine

As Edmund Pellegrino notes above, an ‘explicit or implicit philosophy of human nature’ inevitably prefigures how ethics is operationalised in medical care. The transformative process thus necessarily begins with the ethical, as it is within the framework of the philosophy of human nature that fundamental insights into the nature of human being and becoming, which is the core of ethics, may be expressed and understood. As any medical condition is firstly embedded within the human condition, a robust and resonant framework of understanding this human condition must ideally prefigure any ethical conversation in the applied clinical setting. While the growing profile of bioethics in recent decades has arguably increased awareness of ethical issues such as promoting patient autonomy, preserving confidentiality, contesting paternalism and illuminating asymmetrical institutional power dynamics, many practitioners appear to harbour a great unease about the relevance of the dominant principlist or rationalist ethical frameworks commonly encountered (Caplan 1999; Komesaroff 1995; Pellegrino 2003; Hoffmaster 1991; Kass 2002). In approaching ethics as a detached and theoretical discourse, dominated by ‘assumptions, conventions and imperatives’ (Komesaroff, 1995, p.64), the increasingly specialist bioethics discourse can seem removed from the immediate, day to day concerns of medical care. The well catalogued response of positioning ethical dialogue and deliberation within carefully demarcated ‘dilemmas’ has progressively limited ethical conversations within restricted and increasingly predefined possibilities. Often, extreme examples of what May (1994) describes as ‘headliner quandaries’ are elevated, while discussion about the ‘micro-ethical’ (Komesaroff 1995) or underlying ‘moral sensibilities’ (Kass 2002) of everyday practice, injustices, and relationships becomes silenced. Consequently, the critical questions of ethics have become largely epistemologically based, framed as abstract intellectual puzzles to be solved in the rational and technical realm of philosophical ‘experts’. Perhaps, not surprisingly, the effectiveness of this popular approach in responding to the particular, deeply contextualised and immediate concerns of practitioners and patients alike is regarded by many clinicians as lacking, with the increasingly specialist discourse of bioethics seeming disconnected from the immediate, day to day concerns (Komesaroff 1995). Thus the social, political, and cultural determinants of which cases are deemed to be morally relevant for discussion under this model remain tacitly unacknowledged. Instead of opening medical practice up to ethical

Transforming Practice

187

reflection and enquiry, the narrow frameworks prevalent in much institutional bioethics have perhaps unwittingly been instrumental in closing down ethical analysis and refelction. Komesaroff (1995) further observes from his perspective as a physician that ethics should not be regarded as a technical expert discussion, but rather ethics is ‘what happens between every patient and every doctor everyday’ (ibid, p.68). Expanding this claim, clinical ethics may be equally regarded as what happens in every human encounter in the health care setting everyday, be that nurse-patient, patient-patient, physician-administrator, orderly-social worker, or family memberphysician, and so on. The philosophical orientation, language, and organisational structures to support an accessible and embedded ethics of the everyday in the clinic must be open to accommodate the unique experiences and context laden realities of all stakeholders. Margaret Somerville (2006, p.2) further notes: ‘It’s not that reason, common sense, objective facts, and science are unimportant to ethics – on the contrary. Rather the problem is that they are assumed to be the only matter important to ethics’.

While overarching moral concepts or principles are not rejected, they are more appropriately regarded as anchor points from which to direct and guide ethical conversations, conversations which rightfully begin and end with the deeply contextualised relational encounters between staff, patients and the organisation (Urban - Walker 1993; Pullman 2005; Beauchamp 1999). This, inevitably, will consist of more than the rational analysis of the ‘neutral’ facts. Hoffmaster (2006, p.43) further contests the dominant philosophical account noting that vulnerability and interdependence, rather than rationality and individuality, are the defining characteristics of the human condition. Hence, any ethically relevant or resonant foundation must embrace the ontological understandings inherent within the hermeneutic phenomenological account of the self as embedded, relational, dialogical, interpretive, historicised and, thus, unique. An orientation to ethics such as that proposed in Chapter Two which embraces context, considers particularity, and actively incorporates the role of prior experience into current interpretations thus lays a more coherent and shared moral foundation of understanding, the ‘implicit philosophy of human nature’ acknowledged earlier by Pellegrino (2003). The foundational ontological

188

Chapter Nine

understandings inherent within the hermeneutical phenomenological gaze therefore offers a more resonant, robust, and consistent ethical framework from which to sensitively negotiate patient and practitioner vulnerability in medical care. This ethical stance also forms a more realistic basis from which to support andragogical approaches to education, while prefiguring a more appropriate ethical base from which patient-centred medicine may be practically supported. Affecting such a shift in ethical orientation, however, demands changes to the organisational infrastructure which supports and signals expectations of ethical behaviour to staff and patients. Critically, it also demands a changed stance towards practitioner ethics education. These two potential areas of transformation, organisational infrastructure and practitioner education to facilitate informed consent for patients will now be more fully considered.

Transforming Practitioner Education Chapter Two explored the dominant institutionally entrenched views of how ethics ‘ought’ to function in practice, suggesting that these views emanated from various entrenched, tacitly accepted, and socially reinforced frameworks of medical practice. For example, the accepted belief in the presence of an overarching moral order that may be accessed through application of the right rules or laws, or the belief that all knowledge is valuable, or that science is by definition neutral and objective, are significantly, though for the most part unreflectively, incorporated into health practitioner ethics education. Hence, an initial place to open these pre-existing presumptions to challenge and possibly to transform is in undergraduate, postgraduate and ongoing health care professional ethics education. Much health care ethics education centres upon the reductionist, though popular principlist2 approach to ethical decision making in which the four principles of Beauchamp and Childress (2001) are methodically applied to various problems or dilemmas (Liaschenko, Oguz, and 2

See Beauchamp and Childress (2001). While Beauchamp and Childress give a full and detailed account of each principle, they strongly caution against the use of principles as a canonical script and clearly claim there ought to be no hierarchy in their application. Rather they urge a comprehensive and holistic consideration of each principle within each context.

Transforming Practice

189

Brunnquell 2006; Cowley 2005). This approach tends to promote a particular type of case for which a technical, principlist approach provides a clear answer, affirming this prescriptive mode of decision making as reliable and successful. While the ‘tragic case’ (Liaschenko, Oguz, and Brunnquell 2006) mode of teaching ethics is culturally and institutionally appealing, fitting well with the production of education en masse, it provides limited avenues to highlight the underlying personal, institutional, social, and cultural determinants that shape the everyday moral agenda for patients and practitioners alike and, perhaps unwittingly, entrenches the view that ethical deliberation is best left to ‘experts’. Ultimately, examination of why some cases rise to prominence while others linger silently remains unexplored in these often superficial or sterile ethical debates (Hoffmaster 1991; Caplan 1999; Urban - Walker 1993; Cowley 2005). Liaschenko et al (2006, p.672) further claim that taking the dilemmatic case approach to ethics education is ‘of limited value because it limits understandings of moral problems to dilemmas; negates the moral agency of the student; encourages solutions that are merely intellectual; and suggests that ethical encounters are a matter for experts’. Another potential consequence of imparting reductionist models of ‘doing’ ethics clinically is the increasing trend noted by van den BrinkMuinen et al. (2006.p.334) for practitioners to regard their ethical obligations solely in terms of seeking consent in minimalist legal terms from their patients, a trend accompanied by a decreasing tendency to clarify the ethically critical levels of patient understanding. Indeed Braddock et al (1997, p.343) reported that practitioners checked for patient understanding in only 2% of consultations. Komesaroff (1995, p.67) noted earlier that ‘the vast majority of clinical decisions are taken in an ethical environment in the absence of any obvious dilemma’. Thus, conditioning practitioners to understand the ethical within a limited dilemmatic event framework ultimately impoverishes their human understandings and thus fails to equip them for the ongoing process of guiding morally sensitive, everyday interactions with possibly vulnerable ‘patient others’ that lies ahead. When ethical debate and education focuses on extreme examples, an insidious consequence, Kass further argues (2002, p.2), is that the morality of the commonplace – which is the heart of the ethical - becomes marginalised, ‘The use of surrogate wombs or the definition of death or guidelines for terminating life sustaining treatment captures most of the attention- not

190

Chapter Nine surprisingly - but the morality of ordinary practice is largely ignored. Yet every encounter is an ethical encounter, an occasion for the practice and cultivation of virtue and respect, and between doctors and patients for the exercise of responsibility and trust on both sides. How do physicians speak to patients? Do they have reasonable expectations of their physicians? How do we, individually and culturally, stand with respect to rearing children, sharing intimacies, revering life, facing death? In the absence of attention to these more fundamental and pervasive moral postures and practices, is it reasonable to expect that an ethics for the extreme cases will be sensibly worked out even in theory, let alone be successful when ‘applied’ to practice?’

Thus, there is a strong need for graduate, undergraduate and ongoing professional ethics education to be‘re-humanised’, and for ethics education to focus on preparing practitioners with the necessary hermeneutical insights and sensitivities to enable them to become responsive ethical interlocutors who might be attuned to the unique everyday ‘moral sensibilities and affections or habits and customs of moral agents’ as Kass (2002, p.63) suggested earlier. Framing moral understanding in health care practice as existing between embodied and embedded ‘doers’ in relationships that are shaped by the dynamics and flow of power inherent in that setting, thus provides a more meaningful and empowering ethical scaffolding. Ethical encounters are rather understood and approached as deeply situated human encounters. While these encounters are guided by the frameworks of values, principles and virtues appropriate to the caring setting, attention to the contextual particularities and recognition of the important role of identity and individual subjectivities become permissible in seeking sensitive and practical outcomes. In essence, health care ethics must be taught as a transformative, relational, and engaged endeavour. The role of the practitioner is not one of ethical ‘expert’ or adjudicator; rather, the practitioners’ moral obligation to themselves, their patients, their practice and their organisation is to be and become an informed and sensitive interlocutor within the multiple relationships that define the health care setting. Instilling such an ethical stance begins with the key revelations that: • •

The human condition is one of being and becoming. The human self is embedded in multiple contexts of history, culture, language, relationships, biology, time and spiritual horizons. The unique culmination of these layers shapes unique

Transforming Practice

•

•

191

moral frameworks for patient and practitioner alike and defines the multiple ‘goods’ we affirm. The illness experience (or illness experience in one’s child flagged by prenatal screening) can fracture these goods; hence illness, or the threat of illness, is a time of multiple vulnerabilities. Vulnerability calls for a caring response from another, as Hoffmaster notes, ‘vulnerability marks the limits of individualism’ (Hoffmaster 2006, p.43).

The burgeoning re-emergence of the ‘medical humanities’3 within health care ethics education provides some practical leadership in enhancing practitioners’ humanistic and ethical understandings of themselves and their patients. Similarly grounded in a hermeneutical view of the ethical, the medical humanities invite exploration of individual illness experiences through creative works such as literature, poetry, music, biography and art. Thus, we are invited to consider the unique experience of each person, as opposed to viewing the ethical response in terms of ‘general principles and typical patients’ (Begley 2003, p.127). Ultimately however, the transformation of health practitioner education rests upon more than the simple incorporation of humanities centred activities into the existing frameworks (although this is a powerful strategy), but by also adopting the principles of andragogical learning, encouraging practitioners to participate in and define what they ‘need to know’, by incorporating their prior experiences as a starting point for ongoing ethics education, and by enabling them to share responsibility for their own learning as a personally transformative, dialogical and reciprocal encounter.

Recognising the Ethical Role of Patient Educator A fundamental, though perhaps under-acknowledged, ethical role that practitioners play is one of patient educator. As illustrated in Chapter Nine, patient education is a moral imperative; hence, practitioners must be equipped with a fuller appreciation of the significance of this crucial role. In order to fulfil this role successfully, however, practitioners must be 3

See for example (McKie and Gass 2001; Pullman, Bethune, and Duke 2005; Macduff and West 2002; Weisberg and Duffin 1995; Collett and McLachan 2006; Biley and Champney- Smith 2003; Gull, O'Flynn, and Hunter 2002; Darbyshire 1994; Grant 2002; Begley 2003; Milligan and Woodley 2009)

192

Chapter Nine

prepared with firm understandings of educational philosophy and learnercentred andragogical teaching strategies as these are most fitting in facilitating the levels of reflective understanding that patients require in order to give their informed consent. In addition to an ethical stance anchored in the lived and living human experience, understandings of the ethical import of educational philosophy and a commitment to patient-centred care, practitioners must also possess relevant technical skills and medical knowledge. While limited research exists on practitioners’ knowledge base in prenatal screening, the link between a practitioner’s knowledge and their subsequent ability to appropriately educate, inform and prepare women for testing is an obvious one. The research that does exist paints a disquieting picture of a practice in need of attention, and of practitioners in need of support. Sadler’s 1997 survey undertaken in the United Kingdom of health professionals’ knowledge of serum screening for Down syndrome, for example, concluded that, ‘Women need accurate information to give informed consent to serum screening. Most health professionals likely to be involved in antenatal care in this district do not fully understand the test and are thus unlikely to provide such information’ (Sadler 1997, p.176).

Indeed only 14% of obstetricians in Sadler’s 1997 study (ibid) correctly answered over half the survey questions. While General Practitioners were the most common initial source of women’s information they scored ‘significantly less than other groups’ (ibid, p.176). Similarly, Tyzack and Wallace (2003) noted that less than 15% of practitioners provided accurate information on the characteristics of screening tests regarding Down syndrome, concluding that, ‘the majority of health professionals in the present survey are not providing their patients with accurate information about screening in an age-specific manner’(ibid, p.220). More recently in the United Kingdom, Qureshi, Armstrong, & Modell’s 2006 survey of the GP’s role in prenatal genetic counselling revealed that GPs displayed, ‘lack of confidence in providing basic prenatal genetic advice…indirectly demonstrating a lack of confidence in providing prenatal advice about the risk of Downs Syndrome’ (Qureshi, Armstrong, and Modell 2006, p.109).

Bramwell and Carter (2001, p.139) observed that, when understanding of genetic anomalies or test accuracy was low, in lieu of providing

Transforming Practice

193

accurate information on which a patient could assess and give informed consent, some practitioners offered information based purely on their own personal judgment of the value of the testing under consideration. Such personal beliefs held by practitioners often reflected overestimation of the efficacy and usefulness of screening (ibid). Accounts offered by some practitioners, and previously discussed throughout this research, identified similar knowledge gaps for GPs’, suggesting that GP’s may be ill prepared for the specialised prenatal counselling role. This situation augurs poorly for the future, as prenatal screening becomes progressively more focused on genetics and becomes further embedded within an increasingly routinised framework of antenatal care. As Qureshi et al (2006, p.109) reasonably predict, ‘in the near future, (GP’s) will be exposed to increasing numbers of antenatal genetic screening tests’. Given the apparent lack of preparedness or support that GP’s experience, coupled with the growing complexity of specialised roles that they are expected to fulfil, the ongoing education and support of practising GP’s remains an area of growing concern, but also of potential reform. While educational outreach to practitioners is vital, the problem of how to reach and support those most in need persists as it may be difficult to engage practitioners in the ongoing education they need. One Midwife explained, Many GPs have never had to deal with it before, and even within nursing, you don’t put people into areas to do things that they don’t have the skills to do. I certainly wouldn’t want to be put in cardiology…The assumption is made from the outset that they know it, they do it, they are GP’s, they just do it…the assumption is made I guess by the policy makers in the organisation… (We) need to assess what sort of education is needed…how it is going…and pick up on any comments or complaints that come in. How do you reach the ones that you need to reach because there are a lot who do know? How do you find the ones who don’t know about it? There’s the cost factor too…you can only send out so much stuff……and the time to prepare so much information…it’s a difficult task. Midwife 3

Exploration of what such practitioner education would consist of, or how it could be most effectively delivered, is not within the scope of this research. However, this research certainly flags practitioners’ ethical and technical education as potential areas of ongoing transformation that is likely to have significant impact upon ethical outcomes for women who engage in prenatal screening.

194

Chapter Nine

Open Moral Spaces in Institutional Care While ethical awareness and sensitivity in practitioners and institutions are sought and valued by patients, practical considerations of how to nurture the qualities desired, or how to implement the organisational infrastructure required to support meaningful and accessible ways of approaching clinical ethics, are less apparent. However, as individual moral behaviour and agency is significantly shaped by the normative structures, policies, and organisational procedures, the organisational ethics infrastructure created (or omitted) significantly influences all stakeholders in achieving the ethically coherent outcomes desired (Silverman 2000; Barnett and Vaicys 2000). As positive ethical outcomes for patients have been shown to be significantly influenced by organisational factors rather than by the professionalism of individual practitioners alone (Wildes 1997 cited by Silverman, 2000; Renz and Eddy 1996), the healthcare organisation, public or private, must be recognised as having an active role in shaping the wider ethical climate in which its employees and patients interact (Silverman 2000). Suggesting that the hospital organisation is not simply a neutral location in which independent actors fulfil their various individual roles and responsibilities, Silverman (ibid, p.205) further claims that ‘ethical issues of the clinic are well beyond the control of the individuals involved, as the delivery of patient care is situated in a web of organisational patterns, relationships, structures and processes. Hence, rather than individual professionalism, the moral dimensions of patient care need to be conceptualised as being largely influenced by organisational dynamics’.

Hence, institutions need to respond ethically at an organisational level as they have the capacity to mediate and share ‘the same range of moral responsibilities and obligations that have traditionally been implicit in the relationships between physicians and patients’ (ibid, p.204). The type of institutionalised, normative structures, policies, and procedures endorsed informs employees and patients about the priorities and intentions of the organisation with respect to the resolution of ethical issues (Silverman 2000; Barnett and Vaicys 2000). The ongoing transformation of the ethical in health care, therefore, jointly depends upon the moral integrity and

Transforming Practice

195

orientation of institutions in conjunction with the values, capacities, and conduct of those individuals who function within them4. Philosophically, the understandings of ontology inherent within the phenomenological paradigm previously discussed recognise all stakeholders as embodied, embedded, interpretive, relational, and dialogical. Margaret Urban Walker’s (2003, pp.59-70) ‘expressive-collaborative’ approach to clinical ethics suggests that forging a genuinely collaborative ethical response in institutional care requires the creation of inclusive and ‘open moral spaces’ where ‘actual dialogue replaces hypothetical methods and fixed prior constraints on admissible concerns’ (Walker 2003, p.75). In other words, Walker compels us to commit to entering each other’s narratives as a means of enhancing our shared ethical understandings, having earlier described the process of building an ethical response as ‘not a solution to a puzzle, but rather an outcome of a negotiation’ (1993, p. 36). Again, the promotion of an expressive-collaborative stance recognises that the ethical, like the educational, is an ongoing and evolving process of negotiation towards an end point, rather than an isolated event. While rational deliberation may form a critical part of how we ascribe order and meaning, moral understanding is primarily realised within the possibilities and limitations of the multiple layers of our embedded, embodied reality. As the ethical is characterised in individual lives by a plurality of ‘goods’, located within the complex interweaving and overlapping of uniquely constructed (and sometimes professionally moulded) moral frameworks, there is a need to open shared moral spaces institutionally. The creation of a shared moral space of interlocution is an ethical imperative as it is within these spaces that the pluralities of understandings of what is ethically ‘good’ may be built and the best moral outcomes maybe negotiated as part of a continuing and evolving moral conversation. Adopting this expressive-collaborative view of institutionally embedded ethics facilitates the creation of inclusive and open moral spaces, in which ethical conversations rightfully begin and end with individual subjectivity rather than objectivity, in which particular contextual and situated knowledge, rather than generalised and abstract meanings, forms the basis of the organisational ethical discourse. Indeed, it is precisely these shared moral spaces that invite individuals to open themselves to the ethical plight and perspective of ‘the other’, thus 4

A practical organisational framework to support the nurturing of ethical cultures in institutional health care based on educational support, practical consultation advice and policy reform is proposed by Milligan and Winch (2007).

196

Chapter Nine

widening the scope of ethically permissible conversations and laying the foundations of a more inclusive framework for operationalising ethics in the clinic. The provision of such a space institutionally requires leadership, commitment, and financial support. It further requires that the dominating production models of care delivery, which have encouraged the adoption of reductionist understandings of ethics, be challenged as when staff remain overcommitted and under resourced the time or the place for critical ethical and educational conversations become incurably undermined. Finally, however, Meyers (2007, p.35) cautions, ‘merely creating a venue for everyone to speak cannot equalise the balance of power and produce genuine consensus’. Rosemary Tong similarly counsels that where ‘all voices are not heard, … the moral truth does not emerge’ (Tong 2002, p. 420). Any physical space must, therefore, be accompanied by the appropriate intellectual or philosophical space in which the attitudinal stance advocated throughout this work of embracing ethics as incorporating the appreciative, the hermeneutic the appraisive and the transformative. Finally, it will be a space where ethics is explicitly recognised as an ongoing conversation between informed, ethically sensitive and hermeneutically aware interlocutors embedded in a web of dynamic relationships, an expressive-collaborative space (Urban - Walker 1993, 2003).

Transforming Policy Health care policy, whether imposed externally from government directives or generated internally within particular institutions, significantly shapes the available options, expectations, and resources with respect to how (or even if) the ethical is supported in practice. As previously indicated the organisational policies governing the internal resourcing of procedures, of setting acceptable standards of care, or of signalling expectations about which outcomes are clinically or morally relevant, significantly contribute to the ethical landscape inhabited by staff and patients. In Australia, for example, access to government funded Medicare rebates for a particular procedure signals communal endorsement, politically sanctioning and legitimising the worth of such intervention. As the clinical geneticist noted,

Transforming Practice

197

Legitimising it in many ways means giving it a Medicare item number and that really makes the difference in terms of availability or access and uptake because part of that is consideration of how much these things cost……if you’ve got to put some dollars on the table, you have to show some level of commitment to wanting that test, but if it’s free or bulk billed under a Medicare item number, then it can happen without really…..your direct assent, in a sense. So cost is an important factor in terms of what is routinely offered. Clinical Geneticist.

Similarly, the levels of resourcing, staffing and time allotted to particular consultations further delimit clinicians’ scope of practice by forcing them to reduce and prioritise which aspects of screening will be given preference within the limited time fixed. As one genetic counsellor noted, Well…in 15 minutes there’s not a lot of time…look it’s pretty much a technical discussion for good or bad….it’s seen as very much an education of this is what it is…these are the type results it will give you. Genetic Counsellor 2

Lack of time was cited by several practitioners as negatively influencing their capacity to engage in meaningful moral dialogue with women, as illustrated in the following comments. Particularly inside this particular hospital, you know they don’t have an hour to talk with patients, in fact, they don’t even have 20 minutes to talk with a patient, and they have 10 minutes. How do you develop a rapport in 10 minutes? How do you determine what this lady’s thoughts are and steer your thoughts in line with hers? You don’t. Midwife 1 There’s not the time or effort to put into women who need instant information, even although they have known they are pregnant for some months and have quietly ignored it. Really, GP’s are a bit the same; they are running that day to day stuff – how much time do they really have to teach women everything – they really don’t. Midwife 2

However, not taking the time may ultimately be counterproductive as the constructive therapeutic and educational partnership that supports the ethical aims of practice is undermined and patient outcomes suffer (Say 2003). Empirical research is clearly showing that time spent establishing good communicative partnerships often results in lower patient anxiety, increased trust and confidence, higher physician and patient satisfaction, decreased referrals, and decreased number of medical malpractice suits (Bekker, Hewison, & Thornton, 2003; Levinson, Roter, Mullooly, &

198

Chapter Nine

Frankel, 1997; Stewart, 1995; Stewart et al., 2000). However, Braddock (2002, p.351) challenges the assumption that patient-centred consultations take longer, making the point that ‘the key issue may not be the amount, but rather, the quality of the dialogue’. Similarly Bub (2004) advocates for the ‘need to listen better not longer’ (Bub 2004, p.64) and Waitskin and Stoeckle (1976, cited by Wear, 1998, p.54) observed that clinicians overestimated the time required to achieve informed consent from their patients by a factor of nine times. Most of the authors cited above acknowledge that initial consultations to establish a rapport and strong therapeutic relationship may take longer; however, the ongoing benefits recorded suggest efforts to educate practitioners promote better communication patterns and pay very practical dividends. Additional policy considerations include the discourse of cost–benefit models of analyses which often accompany the introduction of prenatal screening programmes and policies. These may be interpreted as legitimising or lending communal endorsement to the underlying eugenic presumptions inherent within such procedures and are therefore ethically contentious. Some professional codes of practice, notably the Australian Society of Genetic Counsellors (ASGC 2000, p.4)5 reject financially focused justifications for widespread screening stating, ‘when aiming to reduce the burden of genetic disease in the community, genetics services should strive to ensure that economic and other considerations are of secondary importance to the physical and psychological needs of the individual’.

While this statement suggests that financial implications should be given secondary consideration, as Lippman (1991) noted earlier, the very telos of the practice of genetic counselling is directive, premised on the belief that certain conditions (although which particular ones is open to debate and individual interpretation) are inherently too burdensome to bear. The promotion of screening protocols emerges from a professional practice significantly defined by a discourse of risk which presupposes an ideal of perfection that can be aspired to. Production models of care significantly undermine the relationship building and rapport required to foster an appropriate therapeutic partnership and to enhance patient learning. However, perhaps the most influential policy shaping institutional and individual practitioner 5

See www.hgsa.com.au

Transforming Practice

199

behaviour with respect to prenatal screening protocols (and hence, indirectly shape women’s experience and access to such screening) is the law governing termination of pregnancy. In the local context of this research, termination of pregnancy falls under the Criminal Code6, although lawful ‘therapeutic’ termination can be procured on the grounds of threats to the physical health of the mother. A direct consequence of this position is the erosion of transparency which stifles the collection of important public health information relating to the numbers and reasons for termination as a consequence of prenatal screening. Adequately informed reflection and ownership of this widely accepted intervention is subsequently severely inhibited. The widely accepted (or perhaps even expected by some) practice of termination following an unwelcome prenatal diagnosis is therefore arguably out of step with the law in Queensland as it currently stands. The placement of termination under the Criminal Code places the emphasis on cementing a defensive legal justification as opposed to one of exploring the human consequences, without fear of prosecution. Often, the privatisation and individuation that flows from such a defensive legal stance inhibits open reflection as many of these decisions become concealed from the public discourse. Practitioners, too, find themselves occupying contestable legal ground with respect to such terminations under what are predominantly ‘unclear and complex state abortion laws’ (MacFarlane and Reid 2006, p. 155; de Crispegny and Savulescu 2004, para 5). With the Criminal Code in Queensland clearly stating that any procedure is to be a ‘surgical operation’, its purpose reserved ‘for the preservation of the mother’s life’ (Shanahan et al. 2005, p.506), the grounds of termination to preserve the psychological wellbeing of the mother due to fetal abnormality remain contestable in Queensland law. Additionally, the presumption that a disability in one’s child may cause inevitable, unresolvable psychological harm of the magnitude that would endanger the mother’s life seems yet another tacit endorsement and reinforcement of the master narrative defining disability as tragedy. This lack of clarity potentially places practitioners in a grey legal area, one

6

See Section 224, 225 and 226 of the Queensland Criminal Code which states, ‘Any person who, with intent to procure the miscarriage of a woman, whether she is or is not with child, unlawfully administers to her or caused her to take any poison or other noxious thing, or uses force of any kind, or uses other means whatever is guilty of a crime, and is liable to imprisonment for 14 years’ (Shanahan et al. 2005, p.438)

200

Chapter Nine

which promotes fear and encourages the concealment and silencing observed. Figures collated from the 1998 law reform in Western Australia and termination rates recorded in South Australia where termination has been more readily accessible since 1970 reveal that decriminalisation of termination appears not to have opened the floodgates on abortion in those states. As previously mentioned, both of these states retain similar, or even slightly reduced, per capita rates of terminations compared to the Australian average (Straton et al. 2006, p.3; Chan and Sage 2005; Grayson, Hargreaves, and Sullivan 2005). While the intention of current Australian laws may be to acknowledge and enshrine the value of human life, the figures of state based comparisons suggest that the law as it stands does not appear to be curtailing the practice of termination in Queensland7. In spite of the legal obstacles, abortion is available, in effect, on demand for any reason locally. The ethical consequence of this is that women are denied open and transparent access to relevant counselling services while overall community understanding of the reasons and drivers of termination cannot be meaningfully addressed in a public health sense as the appropriate data which would significantly inform such public debate is not collected. Perhaps, and paradoxically, law reform with respect to termination in a number of Australian states may form a critical plank in creating a more ethically transparent culture in which the links between prenatal diagnosis and termination may be openly considered and assessed.

Injecting consistency into data collection and analysis The need to collect ‘evidence’ about particular medical interventions is increasingly regarded as essential to reflecting upon and refining ‘best practice’ in clinical care. Such an evidence base is broadly claimed to enable doctors and patients to make the best possible clinical decisions (Kerridge, Lowe, and Henry 1998) and is generally regarded as a superior approach to refining and assessing practice than the more subjective methods of the past (Bastian 1994; Hope 1995). Indeed, Solomon (2005) argues that collecting and analysing appropriate data can ‘stimulate individual and institutional moral accountability’ (Solomon 2005, p.43) by creating an essential feedback loop which simultaneously motivates 7 Although, there are numerous geographical and demographic factors that contribute to these figures that are not analysed in the documents quoted.

Transforming Practice

201

individual reflection while ensuring institutional accountability. Solomon (ibid) further notes, ‘without data to prove that the problem is local - ‘here in our own institution’- it is too easy to dismiss the problems as not relevant to us’. Thus, there is a strong need for local institutions to commit to the collection, analysis, and incorporation of local ‘evidence’ on outcomes into policy direction and evaluation. When making any new screening test routine, it is critical that the results and accumulated data are subjected to ‘rigorous audit’ (Nicolaides, Heath, and Cicero 2002, p.308). Although nuchal translucency is becoming increasingly routinised, the recommended ‘rigorous audit’ appears not to be methodically occurring. While the efficacy of nuchal translucency screening is known to be highly operator dependent requiring significant specialised training (Braithwaite et al. 1996; Nicolaides, Snijders, and Cuckle 1998), critical comparisons between the numerous public and private providers in Queensland on false positives, false negatives, predictive values, and consequential terminations across facilities are not routinely collected or assessed. Hence, the critical evidence base for reflecting upon whether such outcomes sit comfortably with the expected medical goals and communal moral values is lost, as is the ability to assess the extent of avoidable psychological harm being experienced by women. In Australia, national ‘Medicare’ data tracking such outcomes is also incomplete as there is no mandatory requirement to report terminations (Pratt, Biggs, and Buckmaster 2004). Similarly, post mortem results to corroborate suspected diagnoses appear not to be routinely pursued in practice and, thus, are not assessed in any meaningful way that could inform practice. Previously published research elsewhere has shown that prenatal diagnosis is fully supported by autopsy findings in 60-80% of cases (Ramalho et al. 2006, p.1087; Tennstedt et al. 1998; Laussel-Riera et al. 2000), leaving 20-40% in doubt. Hence, this information, which could provide a critical check and balance on practice and be incorporated into informed decision making, remains lost to women, practitioners, and policy makers. As Ramalho et al (2006, pp.1087-8) conclude, the systematic evaluation of all cases of elective termination is imperative in assessing the adequacy and worth of prenatal diagnosis. The presence of reliable evidence does not however automatically ensure that better decisions will be made (Kerridge, Lowe, and Henry 1998; Goldenberg 2005; Stewart 2001), and the claim that evidence based

202

Chapter Nine

medicine inevitably offers an improved method of decision making may be difficult to discern. Medical decision making inevitably draws upon a broad range of ‘knowledges’, filtered through various interpretative frameworks such as the values of science, personal experience and biases, or economic and political considerations. Not surprisingly, like all human beings, practitioners, too, adopt definitions of evidence that ‘reflects their own interests and bias’ (Stewart 2001, p.287). Kerridge et al (1998, p. 1151) further note: ‘It is not always clear how practitioners integrate these factors into a final decision, but it seems unlikely that medicine can ever be entirely free of value judgments’.

Although the word ‘evidence’ suggests an unfaltering and steadfast reality, there can be no objective standard in terms of how such evidence is collected or interpreted and the consequentialist view implied by the term ‘evidence’ ultimately may not accommodate the ethical and medical realities of clinical decision making (Stewart 2001). Many important outcomes may never be sufficiently calculated or defined, and crucially, without evidence is not without value. Accordingly, the types of evidence privileged in seeking an evidence based approach inevitably stem from sources of ‘authoritative knowledge’, entrenching a hierarchy in which quantitative measurable outcomes are elevated at the expense of qualitative or subjective knowledge (ibid). Goldenberg (2005, p.284) concludes: ‘Popular thinking holds, however, that if it is neutrality that is desired, numbers are the pinnacle. In this age of the ascendancy of health outcomes research, where statistical analysis dominates health policy decision making, “evidence” is tantamount to measure not meaning’.

In the final analysis, ‘evidence’ complete with its limitations and selective interpretations, can still contribute valuable insights to the wider considerations of the outcomes of testing by clarifying which questions ought to be raised, and by providing relevant supporting information to identify the gaps in knowledge that might incorporate ethical reflection into the evolving policy debate.

Transforming Practice

203

Transforming Faith in Technology: Challenging the Sacred Narratives of Science ‘Man (sic) is gifted with pity and other kindly feelings: he has also the power of preventing many kinds of suffering. I conceive it well within his province to replace Natural Selection by other processes that are more merciful and not less effective’ (Sir Frances Galton, 1908, from The Galton Institute8, formerly the Eugenics Education Society).

The development, funding and access to prenatal screening and other reproductive technologies occur in a political space shaped by existing societal values, beliefs and prejudices. In our Western, (mostly) educated, individualistic society, the political space is one in which the pursuit of science has come to hold a kind of powerful cultural imperialism (Lindemann-Nelson, 2001). Where the biotechnology revolution is presented as progressive, scientific, and rational, to stand in question is to be cast automatically as backward, prejudiced, and illogical. Hence, the culturally revered pursuit of science and our belief in the perfectibility doctrine it promotes reinforces our ongoing commitment to scientific progress. Cultural images of biotechnology as trustworthy and ‘self correcting’ (Nelkin 1996) further deflect any critique of the practices of science, while the agenda of the wider public discourse, according to Duster (2003, p.xiii), is shaped by experts such as geneticists, medical specialists, lawyers, and researchers on one hand and critics on the other, portrayed as ‘nannies, naysayers, know-nothings and luddites who put their heads in the sand and try to stop the machinery of progress’. When collective scrutiny and accountability is placed into the private realm of individual hands (via autonomy and choice), the technological agenda becomes an essentially self regulating body, closed off to public inspection. Under these conditions, which Margaret Urban Walker describes as ‘privatisation’ (Urban - Walker 1998, p.172), the subtly coercive dimensions of these practices can become hidden from public view, closing avenues of public reflection and critique. While the technological revolution of science promises perfection or restoration, in the case of prenatal screening, at least, the capacity to treat 8

The Galton Institute ‘exists to promote the public understanding of human heredity and to facilitate informed debate about the ethical issues raised by advances in reproductive technology’. www.galtoninstitute.org.uk

204

Chapter Nine

has not kept pace with the capacity to diagnose. Additionally, true ‘prevention’ remains mostly undelivered, largely beyond the grasp of current screening technologies whose focus is centred on detecting a disability after it already exists. Explanations offered in scientific terms are often incomplete, and the selective information deemed worthy of pursuing is predominantly driven by what existing technologies can measure, rather than what individual parents may want to know. Indeed, this selective ‘knowledge’ is often tenaciously pursued, even when parents express deep scepticism or disinterest as to its alleged worth as Penny, Elizabeth, Terri and Danielle experienced. With respect to prenatal screening, such knowledge is rarely pursued with the intention of offering a practical cure, other than the offer of a ‘medically indicated’ or ‘therapeutic’ termination. Although conceding that human behaviour is vastly complex, reductionist accounts, including reductionist genetic accounts, of these complexities, often removed from the cultural and social interpretive frameworks that shape them are frequently interpreted as scientific fact. Exploring the socially embedded nature of science, Duster (2003) notes that behavioural geneticists are not looking for genetic markers of corporate crime, toe size, or even eye colour – rather, they focus on entrenching existing culturally endorsed preferences and prejudices, focusing, for example, on research into disability, mental illness, intellectual impairment, intelligence, or athleticism. While many human characteristics have a genetic component, the genetic knowledge we chose to pursue is largely framed by social and cultural determinants, hence, the pursuit of genetic information is not simply a neutral scientific pursuit. However, faith in technology to deliver the longed for healthy child persists and misunderstandings about the limitations of technology to secure this outcome continue to permeate and distort the prenatal debate. As discussed earlier, some commentators now claim that it is morally remiss of a parent not to enhance their child genetically, claiming it is ‘rational to want the best possible child’ (Aldred, Savarirayan, and Savulescu 2003, p.337; Savulescu 2005). While medicine has undoubtedly made great advances in many areas, future claims of genetic redemption must be tempered with an awareness of the culturally situated human context into which these revelations are made. We must ask ourselves if the eradication of human suffering is really achievable, or if the embodied human condition is inevitably one of unpredictability,

Transforming Practice

205

vulnerability, interdependence, and fragility, as opposed to one of domination of nature through science, individual power and invincibility. Perhaps recognising some of the story-like qualities of the technological imperative may be an important anchor point in developing a more accountable and humane use of technology. Finally, while embracing the ‘technological imperative’ may hold great promise for the relief of pain and suffering, improved quality of life, and enhanced well being for many, the challenge remains of ‘how do we support the humane and ethical use of such technologies, in ways that do not further re-enforce discriminatory and stigmatizing practices?’ Our capacity to confront and address this question will shape the ethical tone of what is ‘discussable’.

Transforming Individuals As previously indicated, individual and institutional transformations must occur simultaneously and in partnership as in reality they are inseparably interwoven, each defining, enhancing or limiting the other. The suggested institutional transformations included broadening and redefining clinical accounts of ethics, creating open and accessible ethical spaces and stances within the organisational infrastructure, re-humanising clinical ethics education for practitioners, supporting practitioner technical education, embracing law reform, and challenging the sacred narratives of technological progress as categorically progressive and good. The remainder of this chapter will forward some suggestions for the transformation of individuals who access care, or who work within the healthcare system. Individual transformation may be facilitated through a commitment to collaborative shared decision making between clinician and patient via effective communication for patients and physicians alike. Such education and communication must be informed by adopting accessible and appropriate methods of patient education based on portraying an accurate and balanced picture of the aims and potential outcomes of screening, presented in terms that are accessible and in line with the level of health literacy of the patient. Each of these considerations will now be discussed more thoroughly.

206

Chapter Nine

Enhancing Patient Participation – Supporting Shared Decision Making within a Framework of Patient-Centred Care There is a growing awareness among practitioners, increasingly cemented in health care policy and law reform9, that patients should rightfully have a central role in contributing to decisions concerning their own health care and that they, for the most part, seem to welcome this extended role (Godolphin, Towle, and McKendry 2001; Stewart et al. 2000; Bub 2004; Fisher, Dixon, and Honeyman 2005; Stewart et al. 2003; Towle and Godolphin 1999; Weston and Belle- Brown 1989; Weston 2001; Elwyn, Edwards, and Kinnersley 1999; Say 2003; Little et al. 2001; Coulter and Magee 2003). The intentional acceptance of more ‘patientcentred’ care, of which shared decision making (SDM) is a key feature, better supports patient autonomy and is also regarded as a more appropriate and respectful basis from which to form strong therapeutic partnerships. Patient-centred care ideally incorporates five key characteristics. These are: • • • • •

Adopting a multidimensional understanding of illness as a social, psychological and biomedical event. Seeking understanding of the ‘patient as person’, exploring the impact of illness on each individual patient. This includes eliciting the patient’s feelings, expectations and understandings. Sharing power and responsibility by fostering more egalitarian relationships within the medical setting and negotiating common ground in partnership. Forming a therapeutic alliance based on mutual trust. The therapeutic alliance must also be mindful of health promotion and risk reduction. Incorporating awareness of the ‘doctor as person’ and the impact that personal qualities may have on developing ongoing partnerships and on how medicine is practiced.(Mead, Bower, and Hann 2002, p.285; Little et al. 2001, p.469; Stewart et al. 2003)

The key elements of sharing power and building mutual trust in the therapeutic partnership has generated a rising tide of commentary in the

9 Examples include more open access to medical records, freedom of information legislation and policy reform such as that in the UK discussed in Fisher 2005.

Transforming Practice

207

literature reflecting the cultural shift towards SDM10. While the recent systematic review of SDM undertaken by Makoul and Clayman (2006) concluded there was no singular definition, or commonly understood features, of SDM, they describe it as an intentional mode of patient/practitioner interaction defined by a partnership of mutual respect, of equally valuing patient preferences, of discussing all options, benefits and risks, of facilitating appropriate education, and of negotiation, deliberation and seeking of mutual agreement on health care decisions (Makoul and Clayman 2006, p.304). Adopting shared decision making within a patient-centred model of care appears to have many positive health outcomes such as reducing excessive diagnostic testing and ongoing referrals, lowering the incidence of malpractice suits, reducing anxiety, increasing patient compliance with treatment regimes 11, improving health literacy of patients and generally improving the health status of individuals (Stewart et al. 2000; Stewart 1995; Levinson et al. 1997). Such positive outcomes Stewart (2000, p.799) claims are directly attributable to patient perceptions of being included as a full participant in the clinical encounter rather than as a mere passive recipient of treatment. While the potential benefits seem compelling, Braddock (1999) notes that Shared Decision Making is rarely achieved in practice and others report uncertainty over how to actualise SDM in clinical care (Little et al. 2001). Hence, despite a palpable cultural drift in support of SDM, a wealth of research is still being generated indicating that patients frequently feel they are currently not receiving as much information as they need, that they are significantly dissatisfied with health encounters, and that most would welcome a more active role in the decision making process than they are currently afforded (Leithner et al. 2006).

10

Other permutations and incarnations of SDM include Godolphin and Towle’s (2001) Informed Shared Decision Making (ISDM) and Trevena and Barrat’s (2003) Integrated Decision Making (IDM). 11 Goodwin-Johansson (1988) and Raffle (2001) caution against structuring patient education in overly optimistic terms as a means of ensuring ‘compliance’ as this potentially undermines patient autonomy and creates falsely high expectations of treatment. Irrespective of whether a patient ultimately accepts the preferred medical recommendation, the aim of patient education is to genuinely support reflective understanding.

208

Chapter Nine

Even with practitioner and patient receptiveness to SDM, significant challenges and barriers exist. While most practitioners welcome change and see partnership with patients as positive and productive, Fisher et al (2005, p.531) have noted a residual reluctance to ‘let go’, claiming that shared decision making may be interpreted by some as ‘disturbing and undermining’ (ibid). Additionally, clinicians who are primarily trained to deal with the physical dimensions of care may be poorly equipped in their training to communicate effectively with patients as required by the SDM process. Within the predominant disease-centred model of training experienced by health practitioners, emotional and psychological issues may become relegated to a residual role (Zecca et al. 2006, p.129). Consequently, some authors claim that practitioners may lack an awareness of the emotional impact of illness on a person’s life (Fisher, Dixon, and Honeyman 2005; Bub 2004; Mead, Bower, and Hann 2002; Say 2003). However, it is precisely an awareness of the emotional and psychological dimensions of care in practitioners that patients value when assessing what characteristics make a ‘good’ physician (Di Blasi et al. 2001; Laidlaw et al. 2007; Duberstein et al. 2007). Further factors inhibiting the realisation of SDM include the presumption that it will inevitably take extra time which practitioners don’t have12; that limited educational materials are available to scaffold or support patient involvement; that some physicians are simply more comfortable retaining the traditional paternalistic way of relating; that low levels of communication competency are widely apparent in patients and practitioners; and, finally, as discussed earlier, that some practitioners simply lack the technical knowledge, and thus confidence, to invite too open a relationship with their patients. Patients too may be reluctant to share what they believe to be their less authoritative knowledge in a relationship often characterised by a perceived imbalance of power (Say 2003). The apparent ‘reluctance’ to participate may be masking a lack of confidence rather than an active renunciation of decision making. While some patients do genuinely express less desire to be actively involved in decision making (Edwards and Elwyn 2001; Coulter, Entwistle, and Gilbert 1999; McKinstry 2000), being patient-centred is not about wilfully imposing an additional decisional burden on patients who are unwilling or unable to accept the invitation. Rather, shared decisionmaking in a framework of patient-centred care actually means ‘taking into 12

Although this claim is refuted. See (Braddock 2002; Bub 2004; Stewart 1995).

Transforming Practice

209

account the patient’s desire for information and for sharing decisions and for responding appropriately’ (Stewart 2001, p.445). Inevitably, establishing this foundational insight into the evolving therapeutic partnership will begin with a dialogue between patient and practitioner. As Connelly (2005) notes, it will begin with a ‘mindfulness’, an openness to help the patient tell their story and a commitment to value this unique story when it is told. ‘Physicians must be able to help the patient tell the story that is most important, meaningful and descriptive of the situation. If the patients’ narrative is not heard fully, the possibility of diagnostic and therapeutic error increases, the likelihood of personal connections resulting from a shared experience diminishes, empathic opportunities are missed and patients may not feel understood or cared for’ (Connelly 2005, p.84).

Hence, the adoption of patient-centred care and the realisation of SDM in practice will require effective communication skills from all parties in an educational encounter based on accurate and balanced information in a receptive institutional environment. It is to these two considerations, communication and patient education, that we will now turn our attention.

Enhancing Patient /Provider Communication As narratively constructed beings, the ability to communicate and convey our personal stories, to speak, to listen to, and to be heard by each other, lies at the heart of human ethical engagement in the medical arena as elsewhere. As an entry portal into the unique moral perceptions, understandings, and experiences of another human being, effective communication forms the bedrock of the ethical encounter. Chapters Two and Three outlined the ethical importance of narrative, noting that the sharing of experiences through dialogue can improve common understandings, uncovering the rich complexities of individual lives, and better informing our ethical judgements. Narrative and dialogue, or communication is, therefore, pivotal in shaping the ethical agenda and there is a strong need to foster constructive communication competencies in all individuals within open moral spaces within institutions. In spite of the acknowledged association between good communication and enhanced health outcomes for patients, the research journals are full of examples lamenting the consistently poor state of health care communication (Leithner et al. 2004; Cristofalo et al. 2006; Bub 2004), failures that often translate into alienation, crisis, physical harm and

210

Chapter Nine

potentially moral harm. Physicians are recognised as having a potentially powerful influence on promoting patient involvement and opening strong communication channels. Generally, however, it appears that behaviours that optimize patient participation, such as promoting active partnership building and the use of supportive talk, are under used by practitioners in practice (Street et al. 2005). Consequently, much attention has been focussed on improving the communication skills or competencies of physicians. Competent communication by practitioners includes the development of active listening skills, and is further characterised by personal and professional qualities of empathy, non-judgement and self reflection and the ability to identify and address the emotional concerns of the patient (Barry et al. 2000; Post, Cegala, and Miser 2002; Laidlaw et al. 2007). Importantly however, communication is a dialogue, requiring input from both parties. As the patient is the crucial ‘other half of the whole’ in the communication dyad, some researchers are increasingly turning their gaze to the patient’s role in shaping medical communication (Cegala and Lenzmeier Broz 2003; Post, Cegala, and Miser 2002; Cegala et al. 2004; Cegala 2006; Cegala, Street, and Clinch 2007; Street et al. 2005). The reason for this shift in emphasis is not to excuse poor communication in practitioners or to relinquish physician responsibility but to understand and support the positive and potent effect that high patient participation is observed to have on the overall quality of health communication and subsequent health outcomes. In their review of sixteen randomised control trials assessing the impact of teaching patients to communicate on health outcomes, Post et al (2002, p.344) concluded that there was a direct link between patient communication training and improved health related outcomes. High participating patients engender a different communication dynamic with their practitioners described by Cegala et al (2007, p.124) as follows, ‘When interacting with high participation patients, physicians volunteer more information about treatment–related topics such as risks and benefits, treatment options, side effects and descriptions of what treatments entail than when interacting with low–participation patients’.

Additionally, the greater feelings of control and equalizing of the perceived power imbalance by high participating patients also benefits physicians as effective patient communicators are less likely to use

Transforming Practice

211

indirect, or non-verbal ‘hints’, in conveying their concerns (Cegala, Street, and Clinch 2007; Street et al. 2005; Post, Cegala, and Miser 2002). Indeed, high participating patients are more likely to directly disclose their ‘full selves’ (Barry et al, 2000, p,1250) thus facilitating the physician’s capacity to actively listen (Post, Cegala, and Miser 2002). Accordingly, the transformation of health care communication depends upon several factors including the particular context, the particular communication skills of the individuals involved, access to training programs which develop communication competencies in patients and providers, and an awareness of the ethical significance of effective communication.

Promoting Accurate and Balanced Information Underlying decisions regarding what information is to be communicated, by and to who, for what purpose, and to whose detriment or benefit, significantly prefigure and shape the tone of any evolving conversation. With respect to prenatal testing, an area of medical intervention heavily laden with socially, culturally, and technically laden expectations and prejudices, the subject of what information is deemed permissible is substantially pre-filtered through the existing biases inherent within the normative pathway. However, patients cannot build informed reflective understanding unless they are supported with appropriate, full, and balanced information including a detailed description of any condition and the likely outcomes with or without the proposed intervention. The need for even-handed, accurate, and comprehensive information to support individuals faced with morally confronting decisions is therefore essential (Irwig et al. 2006). Commonly, however, research indicates that educational materials aimed at assisting patients in giving informed consent frequently omit topics of relevance to patients, overestimates the usefulness and benefits of intervention, and often contains inaccurate, misleading, or incomplete information (Coulter 1998; Coulter, Entwistle, and Gilbert 1999; Coulter 2002; Lawson 2006; Williams, Alderson, and Farsides 2002; Bramwell and Carter 2001; Burkell and Campbell 2005). While Coulter’s (1999) review was targeted specifically at ten specific health conditions, which did not include prenatal screening, her conclusion of a widespread failure to provide accurate and balance information of relevance to patients was entrenched across many fields of medical care. She concluded:

212

Chapter Nine ‘Current information materials for patients omit relevant data, fail to give a balanced view of the effectiveness of different treatments and ignore uncertainties……… the most common fault (of educational material) was to give an overoptimistic view, emphasising the benefits and glossing over the risks and side effects’ (ibid, p.318-9).

While uncertainty is an inherent feature of clinical practice, and indeed of life, because it may contribute to patient anxiety, regret, or dissatisfaction, physicians may suppress or deny uncertainty in order to maintain patient confidence (Katz, 1984 cited by Gordon, Joos, and Byrne 2000, p.60). Gordon et al (2000, p.63) further note that, as medical education emphasises the importance of ‘unambiguous fact, solvable problems and correct answers’, physicians may have a pre-existing discomfort with uncertainty and their inability to control it. Indeed, Braddock et al (1997, p.323) noted only 5% of consultations in their study explicitly mentioned uncertainty. Uncertainty and risk are nonetheless defining features of prenatal screening and honest disclosure of this inherent ambiguity must be foundational in promoting the adequate understanding desired in recipients of screening. However, Williams et al (2002d) found in their analysis of educational materials pertaining to prenatal screening that, ‘the implicit certainty and precision frequently contained in leaflets and statements of practitioners at our research sites illustrate how tentative ambiguous concepts can be repackaged into authoritative medical certainties’ (Williams, Alderson, and Farsides 2002, p.236).

Stapleton et al (2002, p.641) likewise concluded that educational leaflets in maternity care primarily promoted the perpetuation of existing normative pathways which favoured technological intervention, noting that ‘the framing of information in favour of particular options, ensured compliance with the “right” choice’. The consequence of this encounter for women, Stapleton et al (2002, p.639) conclude, was ‘informed compliance rather than informed consent’, an outcome that disrespects patient agency and inhibits capacity to be a full participant in shared medical decision making. A further example of selective framing in the prenatal debate is the observed obscuring of the link between screening and termination (Santhalahti et al. 1998; Suter 2002, p.257-8; Santhalahti 1999). While it is the case that most couples are never faced with termination as a consequence of screening, for the small percentage that do Suter (2002,

Transforming Practice

213

p.258) asserts that ‘providers should be direct about this option and its emotional costs’. The potential consequence of providing incomplete, falsely ‘unambiguous’, or overly optimistic information, in Raffle’s (2001) opinion is that ‘by giving information that only emphasises the positive aspects of screening the autonomy of individuals is ignored’ (ibid, p.92). Raffle (ibid, p.97) proposes that ‘it is inappropriate to continue to use information about screening purely for encouraging high uptake’, particularly if high uptake is then to be summonsed as evidence of ethical probity and lack of decisional conflict as some researchers have suggested (Cuckle 1995; Whynes 2002). The presumption that patients may be alarmed by too candid a picture or that they should be sheltered from the unsettling truth is firmly rejected by Say & Thomson (2003) and Coulter (1999) who found that rather than being troubled by the presence of uncertainty or potentially bad news, participants expressed a definite preference for information that is ‘balanced and indicates a careful and honest assessment of the pro’s and cons of treatment’ (ibid, p.319). Similarly, the frank disclosure of uncertainty is essential in promoting realistic expectations of care and of building trust in the therapeutic relationship (Gordon, Joos, and Byrne 2000; Say 2003). Just as overly optimistic views about the benefits of screening may be painted, so, too, an excessively pessimistic picture of the difficulties of disability may direct choice towards a particular outcome. As previously discussed in Chapter Seven, negative or misguided stereotypes about living with disability may inform parental deliberation about the value of prenatal screening, while the normative pathway tacitly entrenches a eugenic values position (Lippman 1991; Bridle 2004; Shakespeare 1998). Lawson (2006, p.56) further claims that the dominant negative stereotypes of Down syndrome in particular are directly linked to the higher numbers of selective terminations for this condition than for other conditions. Abramsky, Hall, Levitan, & Marteau, (2001, p.466) likewise observed in their recent study exploring the information given to parents after the diagnosis of a sex chromosome abnormality that ‘ although there were some examples of excellent counselling, there were other examples of grossly inadequate or frankly misleading information being given’. Thus, any full and balanced disclosure of information about potential outcomes of prenatal screening should ideally incorporate social education about the experience of disability (Parens and Asch 2000). When given a ‘risk’ from ultrasound, nuchal or serum screening, women need balanced and accurate

214

Chapter Nine

information about what life with a disability is like (Shakespeare 2001), as Parens and Asch (2000, p.34) suggest, ‘As more and more disabilities can be detected prenatally, perhaps all that is possible at this first, earliest juncture is for prospective parents to receive accurate information about the purposes of screening and brief but balanced information about the disabilities being tested for’.

This social information about life with a disability is as critical in interpreting the meaning of testing as any genetic or clinical information (Shakespeare 1999, p.31). Thus, the purpose of communication and informing is not simply to ‘get’ informed consent, but to empower the patient to make decisions consistent with their own values framework and intentions for their own future (McMillan and Gillett 2002). Inevitably this will mean that some patients ultimately reject the medically preferred option and physicians will increasingly need to learn to trust patients with such decisions (Fisher, Dixon, and Honeyman 2005).

Supporting Patient Learning in the Clinical Environment ‘All one can ever do for a learner en route to he or she forming a view of his or her own is to aid and abet him or her own voyage’ (Bruner 2004, p.90).

Supporting patient learning in the clinical environment is an ethical imperative, thus the remainder of this chapter will explore some practical steps that may be taken to ‘aid and abet’, and hopefully equip and empower, patients for active participation in their own health care decisions. While the vast range of limitations to ensuring full understanding discussed throughout this work may never be completely negated, some basic and achievable improvements could be made in terms of patient education beginning with the quality and relevance of health information. The purpose of consumer health information should be to empower patients by reinforcing and extending their knowledge and enhancing their understanding. However, as flagged previously, it seems that much material falls significantly short of this expectation (Coulter 1998; Coulter, Entwistle, and Gilbert 1999; Coulter 2002; Lawson 2006; Williams, Alderson, and Farsides 2002; Bramwell and Carter 2001; Burkell and Campbell 2005; Stapleton, Kirkham, and Thomas 2002), thus more relevant and accessible educational materials are needed.

Transforming Practice

215

Research suggests that practitioners and patients value written health information (McVea et al. 2000), but the use of educational handouts alone has enjoyed limited success (Braddock et al. 1999; Godolphin, Towle, and McKendry 2001; O'Cathain et al. 2002). Sole reliance on written material without supporting discussion has been associated with poor educational outcomes (Godolphin, Towle, and McKendry 2001), while Braddock’s (1999) study on informed consent which included the use of supplementary written material revealed that only 9% of patient doctor interactions met the criteria for informed decision making. Additionally, the efficacy of health information leaflets largely depends on the knowledge of the physician distributing them, and is significantly determined by how they are circulated (McVea et al. 2000). In practices with a large central stockpile, leaflets were found to have limited effect, whereas, in practices where individual practitioners maintained their own selected range, these were more likely to be distributed appropriately. Furthermore, patients were more likely to read material specifically recommended by a doctor as the explicit attention drawn increased the perceived legitimacy of the information (ibid). A fundamental characteristic of any patient information ought to be that it is ‘readable’(Hochhauser 2003), yet health education information is frequently written at a level beyond the health literacy capacities of the general population (Coulter, Entwistle, and Gilbert 1999; Kendig 2006; Hochhauser 2003; Coulter 1998). Often, the legal orientation of written health material and the desire to protect against litigation or authorise treatment, infects and corrupts the educational intention of genuinely informing. Consequently, many health documents, particularly informed consent forms, adopt an inaccessible legal parlance that may be alienating to patients, written at a reading level that may exceed most patients’ health literacy capacity (Hochhauser 2003; Bottrell et al. 2000; Kendig 2006). If written educational leaflets to contribute to successful learning they must be readable and contain accurate and balanced information. As patients are also known to respond more positively to specific and tailored information, often disregarding generic information, the non-specific nature of much educational health literature demands that they be accompanied by a dialogue with a practitioner to provide necessary individualised interpretation as generic messages may be disregarded as not relevant to particular individuals (McVea et al. 2000). In addition to purely written material, the use of visual representations in the form of decision aids has been found to have a powerful impact on

216

Chapter Nine

improving patient understanding. Decision aids are described by Bekker, Hewison, & Thornton, (2003, p.323) as ‘interventions that help individuals focus on a deliberative choice between two or more treatment options’. Typically, a decision aid includes a visual representation of the options, highlighting the risks, benefits, and likely consequences and an invitation for an open discussion of each person’s individual attitudes and values with respect to their decision13. Commenting on a systematic review of seventeen trials assessing the efficacy of decision aids, O’Connor et al (1999, p731) concluded, ‘Decision aids improve knowledge, reduce decisional conflict, and stimulate patients to be more active in decision making without increasing their anxiety. Decision aids have little effect on satisfaction and a variable effect on decisions.’

Thus, the use of decision aids, such as visual flow charts, or pictorial representations of risk during clinical discussions, have been consistently found to improve understanding, promote decision making and stimulate patient participation (O'Connor et al. 1999). The underlying cognitive explanation for the observed improvements, Bekker et al (2003) suggest, is that cognitive strategies are better supported by decision aids primarily because they assist patients to think about potential areas of conflict and seek meaningful, personalised feedback. Such immediate, interactive, and responsive feedback is recognised by cognitive theorists as essential in the educational cycle because misconceptions may be exposed and crucial patient understandings may be immediately assessed and strengthened (Gage and Berliner 1991; Woods and Barrow 1975). As patients are encouraged to articulate and justify their reasoning in an immediate exchange with their practitioner, more stable decisions are reached and misunderstandings can be more easily identified and instantly remedied in an ongoing conversation. Consultations using decision aids may take longer, but with immediate feedback, the degree of post choice conflict was found to be lower and higher levels of understanding were reached (O'Connor et al., 1999). As patient and practitioner ability to interpret the complex probabilities that accompany prenatal screening is recognised as being problematic (Ghosh 2004; Edwards and Elwyn 2001; Edwards et al. 2003; Edwards, Elwyn, and Mulley 2002), decision aids may be useful in 13

Examples include written texts, flow charts, pictorial representations, interactive computer programs with varying capacity to personalise the information given. The Ottawa Personal Decision Guide website provides numerous examples. http://decisionaid.ohri.ca/decguide.html.

Transforming Practice

217

providing different and complementary visual learning strategies to support the critical understandings of uncertainty that lie at the heart of screening technologies.

Chapter Summary The ethical and educational transformation of practice ultimately depend jointly upon the moral integrity and orientation of the institutions we construct in addition to the values, capacities, and conduct of those individuals who function within them. Transformation must therefore be supported at the individual and the institutional levels simultaneously as, in reality, they are inextricably linked, each impacting upon the other. Institutionally, the philosophical orientation towards ethics must be rehumanised and re-contextualised if it is to be relevant and responsive to the everyday, micro-ethical, and immediate ethical dimensions of practice that practitioners and patients desire. Institutionally, this may be supported through the ethics education of health professionals, in addition to ensuring ongoing technical education within institutionally legitimised and structured open, inclusive moral spaces. Policy reform in response to the damaging production models of health care which place onerous time and resource constraints on practitioners (and thus patients), also require further consideration as does the role of legislation on undermining transparency in the practice of termination within Queensland. Finally, institutionally entrenched acceptance of the perfectibility doctrine of science and a mostly unquestioning belief in technological progress as irrefutably good (although not transparently monitored), remains an area of practice demanding further critique and consciousness raising. Individually, patients may be supported to be full moral participants in their health care decisions by adopting a patient-centred model of care which promotes the realisation of genuinely shared decision making between patient and practitioner. As authentically shared decision making is associated with reduced interventions, reduced referrals, fewer malpractice suits, and improved health literacy and health status of individuals, this mode of relating in the clinical encounter better supports the ethical aims of achieving informed consent based on genuine reflective understanding. However, in order to achieve this, patients and practitioners may need support in developing the necessary communication competencies. While communication education may target at all stakeholders, patient communication training has been found to be more

218

Chapter Nine

effective, as ‘high participating’ patients significantly influence and improve the quality and effectiveness of health care dialogue. Much available health literature aimed at supporting patients omits topics of relevance to patients, overestimates the usefulness and benefits of intervention, and contains inaccurate, misleading, biased or incomplete information. Thus there is a clear need to develop comprehensible, accurate and balanced literature, written in language that is accessible and easily understood by the general population that might complement patient understanding and invite the ethically essential conversations between practitioner and patient to occur. In a framework of patient-centred care with a commitment to shared decision making, the ethical imperative of patient learning may be supported by strategies such as the use of relevant decision aids which enable immediate feedback and allow the patient to personalise the medical concepts by pursuing existing patient knowledge to forge appropriate cognitive links; by actively eliciting patient motivation which is a key predictor of learning; and by clarifying what knowledge is morally, socially, and educationally important. In adopting these insights into how practice may be transformed, the currently observed breakdown of informed consent may be redressed.

EPILOGUE

‘Everything will depend finally, not just on the possibility of choice, but what is chosen’ (Kass, 2002, p.9).

Recent history of antenatal care shows how quickly new technologies become routinised and are embraced before their clinical or societal relevance is clear. As this trend continues with the incorporation of genetic testing, the predicted need to increasingly defer to biomedical authority may further compromise patient autonomy and the capacity to reach the ethical standard of ‘educated’ informed consent. It is, therefore, imperative to respond to the insights offered through this research to develop procedures which can accommodate existing and emerging technologies without eroding patient rights, practitioner obligations, or the ethical conduct of care. When such deeply entrenched social, personal, and institutional constraints discussed throughout are excluded from the ethical discourse of screening, the language of autonomy and choice may seem ‘illusory and mocking’ for some (Bridle 2004) as the capacity to exercise autonomy is, in reality, compromised. Realistically, for many the choice to undergo prenatal screening is the last in a long line of essentially non-choices, socially entrenched and predetermined, to funnel parents down a particular normative pathway, laid out long before they even conceived their child. The powerful culmination of the law, the cultural imperialism of science and technology, and the master narrative of individualism, merge to shape the social and political landscape in which prenatal screening is practiced. While educational and organisational reform may provide a more receptive environment in which all stakeholder perspectives may be sought and valued, a fuller ethical response calls for the reshaping of the political space by contesting these dominant discourses. However, practical steps can be taken educationally to promote informed consent. Basing patient education on existing patient knowledge, building of appropriate cognitive links, ascertaining patient motivation which is a key predictor of learning, and eliciting what knowledge is morally, socially, and educationally important to the patient

220

Epilogue

can promote the reflective understandings required of ethically informed consent. It is the loss of these educational insights in the current transmissive modes of education that has been a major factor in the breakdown of informed consent as an ethical safeguard. Extending Charles Taylor’s (1989, p.92) claim that ‘the central notion here is that articulation can bring us closer to the good as a moral source, can give it power’, this work has sought not only to articulate, but to appreciate and understand the multiple interweaving factors that shape the sociologically complex practice of prenatal screening. Taylor (1989) describes articulation as ‘bringing into the light of awareness that which is unspoken but presupposed’. Once the underlying moral values have been articulated, the complexity of the moral life and the diverse range of goods to which individual persons adhere can be better appreciated and attempts to simplify or reduce moral understandings may be resisted. If the culturally sanctioned means supporting such ‘goods’ is through respect for another’s autonomy, safeguarded by ensuring their opportunity to exercise their educated and understood informed consent, then the numerous barriers to ethically robust and considered prenatal interventions identified in this research, and elsewhere, require the transformation of current practice.

REFERENCES

Alderson, P., C. Williams, and B. Farsides. 2004. Practitioners views about equity within prenatal screening services. Sociology 38:61-80. Aldred, M.J., R. Savarirayan, and J. Savulescu. 2003. It's only teeth - are there limits to genetic testing? Clinical Genetics 63 (5):333-339. Alfirevic, Z. 2003. Early amniocentesis versus transabdominal chorionic villus sampling for prenatal diagnosis. The Cochrane Library. Alfirevic, Z., and J. Neilson. 2004. Antenatal screening for Down's syndrome. BMJ 329:811-812. Anderson, G. 1999. Non-directiveness in prenatal genetics: Patients read between the lines. Nursing Ethics 6 (2):126-136. Anderson, T.E., J.M. Tschann, D.S. Guillion, and A.A. Oppenberg. 1989. Physician communication style and malpractice claims. A complex relationship. Western Journal of Medicine 150:356-360. Asch, A, and D. Wasserman. 2005. Where is the sin in synecdoche? Prenatal testing and the parent-child relationship. In Quality of life and human difference. Genetic testing, health care and disability., edited by D. Wasserman, J. Bickenbach and R. Wachbroit. New York: Cambridge University Press. ASGC. 2006. Australian Society of Genetic Counsellors: Code of Ethics 2000 (cited 14th December 2006). Available from http://hgsa.com.au/images/UserFiles/Attachments/ASGCCodeofEthics. pdf. Baird, P. 1999. Prenatal screening and the reduction of birth defects in populations. Community Genetics 2 (1). Barnett, T., and C. Vaicys. 2000. The moderating effect of individuals' perceptions of ethical work climate on ethical judgments and behavioural intentions. Journal of Business Ethics 27 (4):351-362. Barry, C., C.P. Bradley, N. Britten, F.A. Stevenson, and N. Barber. 2000. Patients' unvoiced agendas in general practice consultations: qualitiative study. British Medical Journal 320:1246-1250. Bastian, H. 1994. The power of sharing knowledge. Consumer participation in the Cochrane Collaboration. Oxford, UK.: Cochrane Centre. Bates, J. 2007. Worried well. Nursing Standard 21 (38):27.

222

References

Beauchamp, T. 1999. The 'four principles' approach. In Meaning and medicine: A reader in the philosophy of health care, edited by J. Lindeman - Nelson. New York: Routledge. Beauchamp, T., and J. Childress. 2001. Principles of biomedical ethics. 5th ed. New York: Oxford University Press. Begley, A. 2003. Creative approaches to ethics: prose, poetry and dialogue. In Approaches to ethics: Nursing beyond boundaries, edited by V. Tschudin. London: Elsevier Science. Belle-Brown, J., M. Stewart, and B.L. Ryan. 2003. Outcomes of patient provider interaction. In Handbook of health communication., edited by T. L. Thompson, A. M. Dorsey, K. I. Miller and R. Parrot. Mahwah, New Jersey.: Lawrenece Erlbaum Associates Publishers. Bellieni, C.V., G. Buonocore, F. Bagnoli, D.M. Cordelli, O. Gasparre, F. Calonaci, G. Filardi, A. Merola, and F. Petraglia. 2005. Is an excessive number of prenatal echographies a risk for fetal growth? Early Human Development 81:689-693. Bernhardt, B, G Geller, T Doksum, S Larson, D Roter, and N Holtzman. 1998. Prenatal genetic testing: Content of discussions between obstetric providers and pregnant women. Obstetrics & Gynaecology 91 (5):648-655. Biesecker, B. B., and L. Hamby. 2000. What Difference the Disability Community Arguments Should Make for the Delivery of Prenatal Genetic Information. In Prenatal Testing and Disability Rights, edited by E. Parens and A. Asch. Washington: Georgetown University Press. Biggio, J.R., C. Morris, J. Owen, and J. Stringer. 2004. An outcomes analysis of five prenatal screening strategies for trisomy 21 in women younger than 35 years. American Journal of Obstetrics and Gynaecology 190:721-729. Biggs, J., and R. Telfer. 1987. The process of learning. 2nd ed. Sydney: Prentice - Hall. Biley, F.C., and J. Champney- Smith. 2003. "Attempting to say something without saying it..." writing haiku in health care education. Journal of medical Ethics; Medical Humanities 29:39-42. Bottrell, M., H. Alpert, R. Fischbach, and L. Emanuel. 2000. Hospital informed consent for procedure forms. Archives of Surgery. 135 (1):26. Boyd, E. 2004. Autopsy after termination of pregnancy for foetal anomaly: Retrospective cohort study. British Medical Journal 328. Boyd, P.A., P. Chamberlain, and N.R Hicks. 1998. 6-year Experience of prenatal diagnosis in an unselected population in Oxford. The Lancet 352 (9140):1577-1581.

The Ethics of Consent and Choice in Prenatal Screening

223

Braddock, C.H. 2002. Factors that predict better informed consent. Journal of Clinical Ethics. 13 (4):344. Braddock, C.H., K.A. Edwards, N.M. Hasenberg, T.L. Laidley, and W. Levinson. 1999. Informed decision making in outpatient practice. Time to get back to basics. JAMA 282 (24):2313 - 2320. Braddock, C.H., D.F. Stephan, W. Levinson, A Jonsen, and R.A. Pearlman. 1997. How do doctors and patients discuss routine clinical decisions? Journal of General Internal Medicine 12 (6):339. Braithwaite, J.M., R.A. Kadir, T.A. Pepera, R.W. Morris, P.J. Thompson, and D.L. Economides. 1996. Nuchal translucency measurement: training of potential examiners. Ultrasound in Obstetrics and Gynecology 8 (3):192-195. Bramwell, R., and D. Carter. 2001. An exploration of midwives and obstetricians knoweldge of genetic screening in pregnancy and theor perception of appropriate counselling. Midwifery 17:133-141. Bricker, L., J. Garcia, J. Henderson, M. Mugford, and J Roberts. 2000. Ultrasound screening in pregnancy; A systematic review of clinical effectiveness, cost effectiveness and women's views. Health Technology Assessments. 4 (16). Bridle, L. 2002. Prenatal diagnosis, choice and the moral character of parenthood. Paper read at What Does it Mean to be Human in the 21st Century?, at Wesley Hospital, Brisbane, QLD. —. 2004. Stories of choice: Mothers of children with Down Syndrome and the ethics of prenatal screening. PhD, School of Social Work and Applied Human Sciences., University of Queensland, Brisbane, Australia. Bridson, J., C. Hammond, A. Leach, and M.R. Chester. 2003. Making consent patient centred. British Medical Journal 327 (7424):1159. Brody, H. 2002. "My story is broken can you help me fix it?" Medical ethics and the joint construction of narrative. In Healthcare ethics and human values: An introductory text with readings and case studies., edited by K. W. M. Fulford, D. L. Dickenson and T. H. Murray. Malden, Massachusetts.: Blackwell Publishers Ltd. Brown, K. 2006. Leadership for social justice and equity: Evaluating a transformative framework and andragogy. Educational Administration Quarterly 42 (5):700-745. Bruner, J. 1991. The narrative construction of reality. Critical Inquiry 18 (1):1-21. —. 2004. Narratives in science. In Reconsidering Science Learning, edited by E. Scanlon, P. Murphy, J. Thomas and E. Whitelegg. London: The Open University.

224

References

Bub, B. 2004. The Patient's lament: hidden key to effective communication: How to recognise and transform. British Medical Journal 30:63-69. Buckley, S. 2005. Gentle birth, gentle mothering. Brisbane: One Moon Press. Burkell, J., and G.D. Campbell. 2005. "What does this mean?" How Webbased consumer health information fails to support information seeking in the pursuit of informed consent for screening test decisions. Journal of the Medical Library Association 93 (3):363. Caplan, A. 1982. Mechanics on duty: The limitations of a technical definition of moral expertise for work in Applied Ethics. Canadian Journal of Philosophy Supplementary Volume 8:1-18. —. 1999. Moral experts and moral expertise. Clinical Ethics: Theory and Practice:59-87. —. 1999. What is immoral about eugenics? BMJ 319:1284. Carothers, A.D, E Boyd, G Lowther, P.M Ellis, D.A Couzin, M.J.W Faed, and A Robb. 1999. Trends in prenatal diagnosis of Down syndrome and other autosomal trisomies in Scotland 1990 to 1994, with associated cytogenic and epidemiological findings. Genetic Epidemiology 16:179-190. Cassell, E. 1991. Recognising suffering. Hastings Centre Report May June:24 - 31. Caughey, A.B. 2005. Cost-effectiveness analysis of prenatal diagnosis: methodological issues and concerns. Gynecologic and Obstetric Investigation (NLM - MEDLINE) 60 (1):11. Cegala, D.J. 2006. Emerging Trends and Future Directions in Patient Communication Skills Training. Health Communication 20 (2):123. Cegala, D.J., C. Gade, S. Lenzmeier Broz, and L. McClure. 2004. Physicians' and Patients' Perceptions of Patients' Communication Competence in a Primary Care Medical Interview. Health Communication 16 (3):289. Cegala, D.J., and S. Lenzmeier Broz. 2003. Provider and patient communication skills training. In Handbook of health communication, edited by T. L. Thompson, A. M. Dorsey, K. I. Miller and R. Parrot. Mahwah, New Jersey: Lawrence Erlbaum Associates Inc. Cegala, D.J., R.L. Street, and C. R. Clinch. 2007. The Impact of Patient Participation on Physicians' Information Provision During a Primary Care Medical Interview. Health Communication 21 (2):177. Chan, A., and L.C. Sage. 2005. Estimating Australia's abortion rates 19852003. Medical Journal of Australia 182 (9):447-452.

The Ethics of Consent and Choice in Prenatal Screening

225

Clapton, J. 2003. Tragedy and catastrophe: contentious discourses of ethics and disability. Journal of Intellectual Disability Research 47:540-547. —. 2004. Burden, bioethics and disability. Queensland University of Technology, Applied Ethics Seminar. 8th October. 2004. Clarkeburn, Henriikka. 2000. Parental duties and untreatable genetic conditions. Journal of Medical Ethics 26 (5):400. Collett, T.J., and J.C. McLachan. 2006. Evaluating a poetry workshop in medical education. Journal of medical Ethics; Medical Humanities 32:59-64. Connelly, J. 2005. Narrative possibilties. Using mindfullness in clinical practice. Biology and Medicine 48 (1):84-94. Coory, M., T. Rosellli, and H.J. Carrol. 2007. Antenatal care implications of population based trends in Down syndrome birth rates by rurality and antenatal care provider, Queensland, 1990-2004. Medical Journal of Australia 186 (5):230-234. Coulter, A. 1998. Evidence based patient information. British Medical Journal 317:225-226. —. 2002. What do patients want from high quality general practice and how do we involve them in improvement? British Journal of General Practice 52 Suppl (S22-26). Coulter, A., V. Entwistle, and D. Gilbert. 1999. Sharing decisions with patients: Is the information good enough? BMJ 318:318 -322. Coulter, A., and H. Magee. 2003. The European patient of the future. Maidenhead: Open University Press. Cowan, N. 1995. Attention and memory: An integrated framework. New York: Oxford University Press. Cowley, C. 2005. The dangers of medical ethics. Journal of Medical Ethics 31:739-742. Cristofalo, E. A ., J.A. DiPietro, K.A. Costigan, P. Nelson, and J. Crino. 2006. Women's response to fetal choroid plexus cysts detected by prenatal ultrasound. Journal of Perinatology 26 (4):215. Cuckle, H. 1995. Cost effectiveness of antenatal screening for Cystic Fibrosis. BMJ 311:1460. —. 2001. Extending antenatal screening in the UK to include common monogenic disorders. Community Genetics 4 (2). Daloz, L.A. 1986. Effective teaching and mentoring: Realising the transformational power of adult learning experiences. San Francisco: Jossey-Boss. Darbyshire, P. 1994. Understanding caring through arts and humanities: a medical/nursing humanities approach to promoting alternative

226

References

experiences of thinking and learning. Journal of Advanced Nursing 19:856-863. Davies, R. 1994. The cunning man. London: Penguin Books. de Crispegny, L.J., and J. Savulescu. 2004. Abortion: Time to clarify Australia's confusing laws. Medical Journal of Australia 181 (4):201203. Dewey, J. 1938. Experience and education. New York: The Macmillan Company. Di Blasi, Z., E. Harkness, E. Ernst, A. Georgiou, and J. Kleijnen. 2001. Influence of context effects on health outcomes: A systematic review. The Lancet 357:757- 762. Di Pietro, J.A., K.A. Costigan, E.A. Cristofalo, and Y. Lu. 2006. Choroid plexus cysts do not affect fetal neurodevelopment. Journal of Perinatology 26 (10):622-627. Dodds, S. 2000. Choice and control in feminist bioethics. In Relational Autonomy, edited by C. Mackenzie and N. Stoljar. New York: Oxford University Press. Donchin, A. 2001. Understanding Autonomy Relationally: Toward a Reconfiguration of Bioethical Principles. Journal of Medicine and Philosophy 26 (4):365- 386. Dormandy, E, R Hooper, S Michie, and T Marteau. 2002. Informed choice to undergo prenatal screening: A comparison of two hospitals conducting testing either as part of a routine visit or requiring a separate visit. Journal of Medical Screening 9:109-114. —. 2002. Informed Choice to undergo prenatal screening: A comparison of two hospitals conducting testing either as part of a routine visit or requiring a separate visit. Journal of Medical Screening 9:109-114. Duberstein, P., S. Meldrum, K. Fiscella, C.G. Shields, and R. M. Epstein. 2007. Influences on patients' ratings of physicians: Physicians demographics and personality. Patient Education and Counseling 65 (2):270-274. Duster, T. 2003. Backdoor to eugenics. New York: Routledge. Eddleman, K., F. Malone, L. Sullivan, K. Dukes, R. Berkowitz, Y. Kharbutli, T. Porter, D. Luthy, C. Comstock, G. Saade, S. Klugman, L. Dugoff, S. Craigo, S. Carr, H. Wolfe, and M. D'Alton. 2006. Pregnancy loss after midtrimester amniocentesis. Obstetrics & Gynaecology 108:1067-1072. Edwards, A., and G. Elwyn. 2001. Understanding risk and lessons for clinincal risk communication about treatment preferences. Qual Health Care 10 (Suppl):i9-13.

The Ethics of Consent and Choice in Prenatal Screening

227

Edwards, A., G. Elwyn, and A.I. Mulley. 2002. Explaining risks: Turning numerical data into meaningful pictures. British Medical Journal 321:827-830. Edwards, A., G. Elwyn, S. Unigwe, and K. Hood. 2003. Effects of communicating individual risks in screening programmes: Cochrane systematic review. (Cover story). BMJ: British Medical Journal 327 (7417):703-707. Egan, J., and A. Borgida. 2002. Screening for Down syndrome. Obstetrics & Gynaecology 27 (2):22-30. Egan, J.F.X., and A.F. Borgida. 2002. Screening for Down Syndrome. Obstetrics & Gynaecology (on-line via Proquest) 27 (2):22-30. (online). Elliot, T.S. 1962. Choruses from 'The Rock' (1934). In Collected Poems 1909 - 1962.: Faber & Faber. Elwyn, G., A. Edwards, and P. Kinnersley. 1999. Shared decision making in primary care: the neglected second half of the consultation. British Journal of General Practice 49:477-482. Elwyn, G., A. Edwards, M. Wensing, K. Hood, C. Atwell, and R. Grol. 2003. Shared decision making: developing the OPTION scale for measuring patient involvement. Quality & Safety in Health Care 12 (2):93-99. Erikson, Susan L. 2001. Post-diagnostic abortion in Germany: reproduction gone awry, again? Social Science & Medicine. Faden, R., N. Kass, and D. McGraw. 1996. Women as vessels and vectors: Lessons from the HIV epidemic. In Feminism and bioethics: Beyond reproduction., edited by H. Wolfe. New York: Oxford University Press. Ferguson, P, A Gartner, and D Lipsky. 2000. The experience of disability in families: A synthesis of research and narratives. In Prenatal Testing and Disability, edited by E. Parens and A. Asch. Washington D.C.: Georgetown University Press. Fineman, R. M., and M. T. Walton. 2000. Should genetic health care providers attempt to influence reproductive outcome using directive counseling techniques? A public health prospective. Women & Health 30 (3):39-47. Fisher, B., A. Dixon, and A. Honeyman. 2005. Informed patients, reformed clinicians. Journal of the Royal Society of Medicine (NLM MEDLINE) 98 (12):530. Fitzgerald, T. 1999. Antenatal Screening: women are being given incomplete information. British Medical Journal 318:805.

228

References

Ford, N. 1999. Ethical aspects of prenatal screening and diagnosis. In Conference Proceedings "Scientific, Medical, Ethical and Legal Aspects of Prenatal Screening and Diagnosis" 17thSept 1999. Edited by Norman Ford. Caroline Chisolm Centre for Health Ethics. Frank, A. 1995. The wounded storyteller: Body, illness and ethics. Chicago: University of Chicago Press. Frank, A.W. 2005. Reinventing Bioethics for New Medical Dilemmas: Narratives and Principles in the 21st Century. Public lecture 26th July, 2005. Queensland University of Technology. Freire, P. 1985. The politics of education. New York: Seabury Press. Gage, N., and D. Berliner. 1991. Educational psychology. Boston: Houghton Mifflin Company. Garne, E. 2001. Different policies on prenatal ultrasound screening programmes and induced abortions explain regional variations in infant mortality with congenital malformations. Fetal Diagnosis and Therapy 16 (3). Getz, Linn, and Anne Luise Kirkengen. 2003. Ultrasound screening in pregnancy: advancing technology, soft markers for fetal chromosomal aberrations, and unacknowledged ethical dilemmas. Social Science & Medicine 56 (10):2045-2057. Ghosh, A.K. 2004. Do medical students and physicians understand probability? Quarterly Journal of Medicine 97:53-56. Gillott, J. 2001. Screening for disability: a eugenic pursuit? Journal of Medical Ethics (NLM - MEDLINE) 27 Suppl 2:II21. Godolphin, W. 2003. The role of risk communication in shared decision making. British Medical Journal 327 (7417):692-693. Godolphin, W., A. Towle, and R. McKendry. 2001. Challenges in family practice related to informed and shared decision - making: A survey of preceptors of medical students. JAMC 165 (4):434 - 438. Goel, V., R. Glazier, A. Summers, and S. Holzapfel. 1998. Psychological outcomes following maternal serum screening: a cohort study. Canadian Medical Association Journal 159 (6). Goldenberg, M. 2005. Evidence based ethics? On evidence-based practice and the 'empirical turn' from normative bioethics. BMC Medical Ethics 6:11. Goodwin-Johansson, Charity. 1988. Educating the Adult Patient. Lifelong Learning 11 (7):10. Goodyear, M. D. E., K. Krleza-Jeric, and T. Lemmens. 2007. The Declaration of Helsinki. BMJ 335 (7621):624-625.

The Ethics of Consent and Choice in Prenatal Screening

229

Gordon, G.H., S.K. Joos, and J. Byrne. 2000. Physician expressions of uncertainty during patient encounters. Patient Education and Counseling 40:59-65. Grant, V.J. 2002. Making room for medical humanities. Journal of medical Ethics; Medical Humanities 28:45-48. Grayson, N., J. Hargreaves, and E.A. Sullivan. 2005. Use of routinely collected national data sets for reporting on induced abortion in Australia. Sydney: AIWH National Perinatal Statistics Unit. Green, J. M., J. Hewison, H. L. Bekker, L. D. Bryant, and H. S. Cuckle. 2004. Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technology Assessment 8 (33):1-+. Green, R.M. 1997. Parental autonomy and the obligation not to harm ones child genetically. Journal of Law, Medicine and Ethics 25:8. Green, R.M, and H. Statham. 1996. Psychosocial aspects of prenatal screening and diagnosis. In The trouble helix: Social and psychological implications of the new genetics, edited by T. M. Marteau and M. Richards. Cambridge: Cambridge University Press. Grover, S. 2003. The psychological dimension of informed consent: Dissonance process in genetic testing. Journal of Genetic Counselling 12 (5):389-403. Gull, S.E., R.O. O'Flynn, and J.Y.L. Hunter. 2002. Creative writing workshops for medical education:learning from a pilot study with hospital staff. Journal of medical Ethics; Medical Humanities 28:102104. Harris, G., L. Connor, A. Bisits, and N. Higginbotham. 2004. "Seeing the baby": pleasures and dilemmas of ultrasound technologies for primiparous Australian women. Medical Anthropology Quarterly (NLM - MEDLINE) 18 (1):23. Harris, R.A. 2004. Cost utility of prenatal diagnosis and the risk-based threshold. The Lancet 363 (9405):276. Harris, R.A., A.E. Washington, R.F. Jr. Nease, and M. Kuppermann. 2004. Cost utility of prenatal diagnosis and the risk-based threshold. Lancet (NLM - MEDLINE) 363 (9405):276. Harrison, G., and D. Goldie. 2006. Second-trimester Down's syndrome serum screening: double, triple or quadruple marker testing? Annals of Clinical Biochemistry 43:67. Helen, I. 2002. Risk and anxiety: polyvalence of ethics in high-tech antenatal care. Critical Public Health 12 (2):119-137.

230

References

Helm, D., S. Miranda, and N. A. Ched. 1998. Prenatal diagnosis of Down's Syndrome: mothers reflections on supports needed from diagnosis to birth. Mental Retardation 36 (1):55-61. Herman, A., R. Maymon, E. Dreazen, E. Zohav, O. Segal, S. Segal, and Z Weinraub. 1999. Utilization of the Nuchal Translucency ImageScoring Method during Training of New Examiners. Fetal Diagnosis and Therapy 14 (4):234. Heyman, B., G. Hundt, J. Sandall, K. Spencer, C Williams, R. Grellier, and L. Pitson. 2006. On being at higher risk: A qualitative study of prenatal screening for chromosomal anomalies. Social Science & Medicine 62 (10):2360. Hochhauser, M. 2003. Is it ethical to give out unreadable information? Managed Care Quarterly 11 (2):33-36. Hoffmaster, B. 1991. The theory and practice of applied ethics. Dialogue 30:213 - 234. Hoffmaster, Barry. 2006. What Does Vulnerability Mean? The Hastings Center Report 36 (2):38. Hope, T. 1995. Evidence-based medicine and ethics. Journal of Medical Ethics 21:259-260. Hubbard, R. 1988. Eugenics: New tools, old ideas. New York: Haworth Press. Hubbard, R. 2001. Prenatal testing and disability rights, by Eric Parens and Adrienne Asch, eds. Socialism and Democracy 15 (2):164. Hulsman, R.L., W.J. Ros, J.A. Winnburst, and J.M. Bensing. 1999. Teaching clinically experienced physicians communication skills. A review of evaluation studies. Medical Education 33:665-668. Hulsman, Robert, Adriaan Visser, and Gregory Makoul. 2005. Addressing some of the key questions about communication in healthcare. Patient Education and Counseling 58 (3):221-224. Irwig, L., K. McCaffery, G. Salkleld, and P. Bossuyt. 2006. Informed choice for screening:implications for evaluation. British Medical Journal 332:1148-1150. Isaacs, P. 2003. Doing ethics - An action based approach. Paper read at Peninsula Behavioural Health Conference, at Gatlinburg, Tennessee. Jaques, A.M, J.L Halliday, I. Francis, Bonacquisto, R. Forbes, A Cronin, and L.J. Sheffield. 2007. Follow up and evaluation of the Victorian first-trimester combined screening programme for Down syndrome and trisomy 18. BJOG 114 (7):812. Jecker, N., A. Jonsen, and R.A. Pearlman. 1997. Bioethics. An introduction to history methods and practice. Boston: Jones and Bartlett Publishers.

The Ethics of Consent and Choice in Prenatal Screening

231

Ji, E., D. H. Pretorius, R. Newton, K. Uyan, A. D. Hull, K. Hollenbach, and T. R. Nelson. 2005. Effects of ultrasound on maternal -fetal bonding: a comparison of two and three dimensional imaging. Ultrasound in Obstetrics and Gynaecology 25 (5):473-477. Jonsen, A. 1998. The birth of bioethics. New York: Oxford University Press. Kaiser, Amy, Lorraine Ferris, Anne Pastuszak, Hilary Llewellyn-Thomas, Jo-Ann Johnson, Susan Conacher, and Shaw. 2002. The effects of prenatal group genetic counselling on knowledge, anxiety and decisional conflict: issues for nuchal translucency screening. Journal of Obstetrics & Gynaecology 22 (3):246-255. Kass, L.R. 2002. Life, liberty and the defense of dignity. The challenge for bioethics. San Francisco: Encounter Books. Katz - Rothman, B. 1986. The tentative pregnancy : How amniocentesis changes the experience of motherhood.: W. W. Norton & Company. Kendig, Susan. 2006. Word Power. The Effect of Literacy on Health Outcomes. AWHONN Lifelines 10 (4):327-331. Kenen, R. 1999. Disability rights and prenatal genetic testing. Network News 24 (2):3. Kenen, Regina. 1996. The 'at-risk' health status and technology: A diagnostic invitation and the 'gift' of knowing. Social Science & Medicine 42 (11):1545-1553. Kerridge, I, M. Lowe, and D. Henry. 1998. Ethics and evidence based medicine. British Medical Journal 316 (7138):1151. Kleinveld, J. H., D. R. M. Timmermans, D.J. de Smit, H.J. Ader, G. van der Wal, and L.P. ten Kate. 2006. Does prenatal screening influence anxiety levels of pregnant women? A longitudinal randomised controlled trial. Prenatal Diagnosis 26:354-361. Knowles, M. 1970. The modern practice of adult education: Andragogy versus pedagogy. New York: Association Press. —. 1990. The adult learner: A neglected species. Houston, TX.: Gulf Publishing Company. Knowles, M., E.F. Holton, and R.A. Swanson. 2005. The adult learner : The definitive classic in adult education and human resource development. Burlington: Elsevier. Kohut, R.J. 2002. Women's knowledge of prenatal ultrasound and informed choice. Journal of Genetic Counselling 11 (4):265-276. Kolker, A., and B.M. Burke. 1994. Prenatal testing: A sociological perspective. Westport, CT.: Bergin and Garvey. Komesaroff, P. 1995. From bioethics to microethics: Ethical debate and clinical medicine. In Troubled Bodies. Critical Perspectives on

232

References

Postmodernism, Medical Ethics and the Body, edited by P. Komesaroff: Melbourne University Press. Kornman, L.H., L.P. Morssink, J.R. Beekhuis, B.T.H.M. De Wolf, M.P. Heringa, and A. Mantingh. 1996. Nuchal transluceny cannot be used as a screening test for chromosaomal abnormalities in the first trimested of a pregnancy in a routine ultrasound practice. Prenatal Diagnosis 16 (9):797-805. Kowalcek, A., A. Muhlhoff, S. Bachmann, and U. Gembruch. 2002. Depressive reactions and stress related to prenatal medicine procedures. Ultrasound Obstetrics and Gynaecology 19:18-23. Kuhse, H., and P. Singer. 1985. Should the baby live? :The problem of handicapped infants. Oxford: Oxford University Press. Kuppermann, M., J.D. Goldberg, R.F. Jr. Nease, and A.E. Washington. 1999. Who should be offered prenatal diagnosis? The 35-year-old question. American Journal of Public Health (NLM - MEDLINE) 89 (2):160. Kuppermann, M., and M.E. Norton. 2005. Prenatal testing guidelines: Time for a new approach? Gynaelogic and Obstetric Investigation 60:6-10. Laidlaw, T.S., D.K. Kaufman, J. Sargent, H. MacLeod, K. Blake, and D. Simpson. 2007. What makes a physician an exemplary communicator with patients? Patient Education and Counseling 68:153-160. Laussel-Riera, A, L. Devisme, S. Manouvrier- Hanu, F. Puech, Y. Robert, and B. Gosselin. 2000. Value of fetopathological examination in medical abortions: comparison of prenatal diagnosis and autopsy results of 300 foetuses. Ann Pathol 20:549-557. Lawson, K.L. 2006. Expectations of the parenting experience and willingness to consider selective termination for Down Syndrome. Journal of Reproductive and Infant Psychology 24 (1):43. Leithner, K., E. Assem-Hilger, M. Fischer-Kern, H. Loffler-Stastka, R. Thien, and E. Ponocny-Seilger. 2006. Prenatal care: the patient's perspective. A qualitative study. Prenatal Diagnosis 26:931-937. Leithner, K., M. Fischer-Kern, E. Hilger, H. Loffler-Stastka, and E. Ponocny-Seilger. 2004. Affective state of women following a prenatal diagnosis: predictors of negative psychological outcome. Ultrasound Obstetrics and Gynaecology 23:240-246. Levi, S. 1998. Routine ultrasound screening of congenital anomalies: An overview of the European experience. Annals of the New York Academy of Science 18 (847):86-98.

The Ethics of Consent and Choice in Prenatal Screening

233

—. 2002. Ultrasound in prenatal diagnosis: polemics around routine ultrasound screening for second trimester foetal malformations. Prenatal Diagnosis 22:285-295. Levinson, W., D.L. Roter, J.P. Mullooly, and R.M. Frankel. 1997. Physician -patient communication : The relationship with malpractice claims among primary care physicians and surgeons. JAMA 277:553559. Liamputtong, P., J.L. Halliday, R. Warren, L.F. Watson, and R.J. Bell. 2003. Why do women decline prenatal screening and diagnosis? Australian women's perspective. Women and Health 37 (2):89-108. Liamputtong, P., and L. Watson. 2002. The voices and concerns about prenatal testing of Cambodian, Lao and Vietnamese women in Australia. Midwifery 18:304-313. Liaschenko, J., N.Y. Oguz, and D. Brunnquell. 2006. Critique of the "tragic case" method in ethics education. Journal of Medical Ethics 32 (11):672-677. Lindemann-Nelson, H. 2001. Damaged identities: Narrative repair: Cornell University Press. Lippman, A. 1991. Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. American Journal of Law and Medicine 27 (1&2):15. —. 1999. Choice as a risk to women's health. Health, Risk and Society 1 (3):281-291. —. 1999. Prenatal diagnosis (letter). American Journal of Public Health (NLM - MEDLINE) 89 (10):1592. —. 2003. Eugenics and public health. American Journal of Public Health (NLM - MEDLINE) 93 (1):11. Little, P., H. Everitt, I. Williamson, G. Warner, and et al. 2001. Preferences of patients for patient centered approach to consultation in primary care: Observational study. British Medical Journal 322 (7284):468. Lu, M.C., M. Kotelchuck, J.F. Culhane, Hobel. C., L.V. Klerman, and J.M. Jr Thorp. 2006. Preconception Care Between Pregnancies: The Content of Internatal Care. Maternal and Child Health Journal 10:107. Lumley, J. 1990. Through a glass darkly: ultrasound and prenatal bonding. Birth (Berkeley, California) 17 (4):214-217. Lynch, E. 2007. Why size matters. Nursing Standard (NLM - MEDLINE) 21 (18):22. Macduff, C., and B. West. 2002. Developing the use of poetry within healthcare culture. British Journal of Nursing 11 (5):335-341.

234

References

MacFarlane, P.J.M., and S.J. Reid. 2006. Queensland Health Law Handbook. 16th ed: Qld Department of Health. Macones, G., and A. Odibo. 2005. First Trimester Screening: Economic Implications. Seminars in Perinatology Prenatal Screening: Incorporating the First Trimester Screening 29 (4):263-266. Makoul, G., and M. L. Clayman. 2006. An integrative model of shared decision making in medical encounters. Patient Education and Counseling 60 (3):301-312. Manson, N.C. 2007. Consent and informed consent. In Principles of Health Care Ethics, edited by R. E. Ashcroft, H. Dawson, H. Draper and J. R. McMillan: John Wiley & Sons Ltd. Manson, N.C., and O. O'Neill. 2007. Rethinking informed consent in bioethics. Cambridge: Cambridge University Press. Marinac-Dabic, D. 2002. The safety of prenatal ultrasound exposure in human studies. Epidemiology 13 (3 Suppl):S19-22. Markens, S, C Browner, and N Press. 1999. 'Because of the risks': how US pregnant women account for refusing prenatal screening. Social Science & Medicine 49 (3):359-369. Marteau, T, and E Dormandy. 2001. Facilitating informed choice in prenatal testing: How well are we doing? American Journal of Medical Genetics 106 (3):185-190. Marteau, T., E. Dormandy, and S. Michie. 2001. A measure of informed choice. In Health Expectations: Blackwell Science Ltd. Marteau, T. M., E. R. Dormandy, and S. Michie. 2001. Informed choice and prenatal screening: Comparison of same day vs return visit testing. American Journal of Human Genetics 69 (4):426-426. Marteau, T. M., J. Slack, J. Kidd, and R. W. Shaw. 1992. Presenting a routine screening test in antenatal care - Practice observed. Public Health 106 (2):131-141. Marteau, Theresa M., and Harriet Drake. 1995. Attributions for disability: The influence of genetic screening. Social Science & Medicine 40 (8):1127-1132. May, W. 1994. The virtues in a professional setting. In Medicine and Moral Reasoning, edited by K. W. M. Fulford, G. R. Gillett and J. M. Soskice. Cambridge, England: Cambridge University Press,. McCredie, J. 2007. Worried well driving GPs to distraction. Australian Doctor:1. McKie, A., and J.P. Gass. 2001. Understanding mental health through reading selected literature sources: an evaluation. Nurse Education Today 21 (3):201-208.

The Ethics of Consent and Choice in Prenatal Screening

235

McKinstry, B. 2000. Do patients wish to be involved in decision making in the consultation? A cross sectional survey with video vignettes. British Medical Journal 321 (7265):867. McMillan, J., and G Gillett. 2002. Consent as empowerment: The role of postmodern and narrative ethics. In Healthcare ethics and human values: An introductory text with readings and case studies, edited by K. W. M. Fulford, D. L. Dickenson and T. H. Murray. Malden, Massachusetts: Blackwell Publishers Ltd. McVea, K.L.S.P., M. Venugopal, B.F. Crabtree, and V. Aita. 2000. The organisation and distribution of patient education materials in family medicine practices. The Journal of Family Practice 49 (4):319-326. Mead, Nicola, Peter Bower, and Mark Hann. 2002. The impact of general practitioners’ patient-centredness on patients’ postconsultation satisfaction and enablement. Social Science & Medicine 55 (2):283-299. Mei-The, A., T. Hak, G. Koeter, and G. van der Wal. 2000. Collusion in doctor-patient communication about imminent death: an ethnographic study. British Medical Journal 321:1376-1381. Mezirow, J. 1991. Transformative dimensions of adult learning. San Francisco: Jossey- Boss. —. 1996. Contemporary paradigms of learning. Adult Education Quarterly 46 (3):158-172. —. 1997. Transformative learning: Theory to practice. New Directions for Adult and Continuing Education (74):5-12. Michie, S, E Dormandy, and T Marteau. 2002. The multi-dimensional measure of informed choice: A validation study. Patient Education and Counseling 48:87-91. —. 2003. Informed choice: understanding knowledge in the context of screening uptake. Patient Education and Counseling 50:247-253. Milligan, E., and E. Woodley. 2009. Creative expressive encounters in health ethics education: Teaching ethics as relational engagement. Teaching and Learning in Medicine .21(2):131-139 Mitchell, K, I Kerridge, and T Lovat. 1996. Bioethics and clinical ethics for health care professionals. 2nd ed. Wentworth Falls: Social Science Press. Mount, E. 1990. Professional ethics in context : institutions, images, and empathy. Louisville, Ky: Knox Press. Nelkin, D. 1996. An uneasy relationship: The tensions between medicine and the media. The Lancet 347 (9015):1600-1604. Nelkin, D., and M.S Lindee. 1995. The DNA Mystique: The Gene as a Cultural Icon: W.H. Freeman & Co.

236

References

Neugebauer, R., J. Kline, P. Shrout, A. Skodol, and et al. 1997. Major depressive disorder in the 6 months after miscarriage. JAMA 277 (5):383. Newell, C. 2003. Embracing life: Ethical challenges in disability and biotechnology. Interaction 16 (2):25-33. —. 2007. Narrating normalcy: Disability, medicine and ethics. Journal on Developmental Disability 13 (2). Newnham, J.P., D.A. Doherty, G.E. Kendall, S.R. Zubrick, and et al. 2004. Effects of repeated prenatal ultrasound examinations on childhood outcome up to 8 years of age: follow-up of a randomised controlled trial. The Lancet 364 (9450):2038. Nicolaides, K.H., G. Azar, D. Byrne, C. Mansur, and K. Marks. 1992. Fetal nuchal translucency: ultrasound screening for chromosomal defects in first trimester of pregnancy. British Medical Journal 304:867-889. Nicolaides, K.H., V. Heath, and S. Cicero. 2002. Increased fetal nuchal translucency at 11-14 weeks. Prenatal Diagnosis 22:308-315. Nicolaides, K.H., R.J. Snijders, and H Cuckle. 1998. Correct estimation of parameters of ultrasound nuchal translucency screening. Prenatal Diagnosis 18:519-523. Noble, D. 1999. The religion of technology. New York: Penguin. O'Brien, G. What are the Principles of Adult Learning? 2004 (cited 12th August, 2007. Available from http://www.southernhealth.org.au/cpme/articles/adult_learning.htm. O'Cathain, A., K. Thomas, S. J. Walters, J. Nicholl, and M. Kirkham. 2002. Women's perceptions of informed choice in maternity care. Midwifery 18 (2):136-144. O'Connor, A, A Rostom, V Fiset, J Tetroe, V Entwhistle, Hilary Llewellyn-Thomas, M Holmes-Rovner, M Barry, and J Jones. 1999. Decision aids for patients facing health treatment or screening decisions: systematic review. British Medical Journal 319:731-734. Oakley, A. 1996. The history of ultrasonography in obstetrics. Birth 13 (1):8-13. Olin Lauritzen, S., and L. Sachs. 2001. Normality, risk and the future: implicit communication of threat in health surveillance. Sociology of Health & Illness 23 (4):497-516. Parens, E, and A Asch. 2000. The disability rights critique of prenatal genetic testing. The Hastings Center Report 29 (5):S1. Parker, M, K.L Forbes, and I Findlay. 2002. Eugenics or empowered choice? Community issues arising from prenatal testing. Australian and New Zealand Journal of Obstetrics and Gynaecology 42 (1):10-14.

The Ethics of Consent and Choice in Prenatal Screening

237

Pauly Morgan, K. 1998. Contested bodies, contested knowledges: Women, health and the politics of medicalisation. In The politics of womens health: Exploring agency and autonomy, edited by S. Sherwin. Philadelphia: Temple University Press. Pellegrino, E.D. 2003. From medical ethics to a moral philosophy of the professions. In The story of bioethics, edited by J. K. Walter and E. P. Klein. Washington: Georgetown University Press. Peters, M.J., L.C. Morgan, and L. Gluch. 2004. Smoking cessation and elective surgery: the cleanest cut. Medical Journal of Australia 180 (7):317. Pilnick, A. 2004. 'It's just one of the best tests that we've got a the moment': the presenation of nuchal translucency screening for fetal abnormality in pregnancy. Discourse and Society 15 (4):451-465. Post, D.M., D.J. Cegala, and W.F. Miser. 2002. The other half of the whole: Teaching patients to communicate with physicians. Family Medicine 34 (5):344-352. Pratt, A., A. Biggs, and L. Buckmaster. 2004. How many abortions are there in Australia? A discussion of abortion statistics, their limitations, and options for improved statistical collection: Parliament of Australia. Social Policy Section. Research Brief no. 9 2004–05. Press, N, and C Browner. 1993. 'Collective fictions': Similarities in reasons for accepting maternal alpha-fetoprotein screening among women of diverse ethnic social class backgrounds. Fetal Diagnosis and Therapy 8 (suppl):97-106. —. 1995. Risk, autonomy and responsibility: Informed consent for prenatal testing. The Hastings Center Report 25 (3). —. 1997. Why women say yes to prenatal diagnosis. Social Science & Medicine 45 (7):979-989. Pullman, D. 2005. Ethics first aid: Reframing the role of 'principalism' in clinical ethics education and practice. Journal of Clinical Ethics 16 (3):223-229. Pullman, D., C. Bethune, and P. Duke. 2005. Narrative means to humanistic ends. Teaching and Learning in Medicine 17 (3):279-284. Qureshi, N., S. Armstrong, and B. Modell. 2006. GPs' opinions of their role in prenatal genetic services: a cross-sectional survey. Family Practice 23 (1):106. Rachal, J.R. 2002. Andragogy's detectives: A critique of the present and a proposal for the future. Adult Education Quarterly 52 (3):210-227. Ramalho, C., A. Matias, O. Brandao, and N. Montenegro. 2006. Critical evaluation of elective termination of pregnancy in a tertiary foetal medicine centre during 43 months: correlation of prenatal diagnosis

238

References

findings and postmortem examination. Prenatal Diagnosis 26:10841088. Rapp, R. 2000. Testing the woman, testing the fetus. The social impact of amniocentesis in America. New York: Routledge. Reese, H.W., and W.E. Overton. 1970. Models of development and theories of development. In Life span development psychology, edited by L. R. Gottlet and P. B. Baltes. New York: Academic Press. Reinders, H. 2000. The future of the disabled in liberal society: An ethical analysis. Notre Dame: University of Notre Dame Press. Renz, D.O., and W.B. Eddy. 1996. Organisations, ethics and health care: Building an ethics infrastructure for a new era. Bioethics Forum 12:2939. Richie, K., J. Boynton, and I. Bradbury. 2004. Routine ultrasound scanning before 24 weeks of pregnancy. Health Technology Assessment Report 5. NHS Quality Improvement Scotland: Glasgow. Rothblatt, M. 1997. Unzipped genes: Taking charge of baby making in the new millennium. Philadelphia: Temple University Press. Russell, S.S. 2006. An overview of adult-learning processes. Urologic Nursing (NLM - MEDLINE) 26 (5):349. Sadler, M. 1997. Serum screening for Downs Syndrome: how much do health professionals know? British Journal of Obstetrics and Gynaecology. 104:176-179. Santhalahti, P. 1999. Participation in prenatal screening and intentions concerning selective termination in Finnish maternity care. Fetal Diagnosis and Therapy 14 (2):71-79. Santhalahti, P, E Hemminki, A Latikka, and M Ryynanen. 1998. Women's decision making in prenatal screening. Social Science & Medicine 46 (8):1067-1076. Savulescu, J. 2005. New breeds of humans: the moral obligation to enhance. Reproductive Biomedicine Online 10 (Supplement 1):36-39. Savulescu, Julian. 2001. Procreative beneficence: why we should select the best children. Bioethics (H.W. Wilson - SSA) 15 (5/6):413. Say, R. 2003. The importance of patient preferences in treatment decisions - challenges for doctors. British Medical Journal 327:542. Schanholzer, S. M., L. Gatzmann, R. Zimmermann, and C. Buddeberg. 2000. Psychological aspects of ultrasound examinations during pregnancy. Gynakologisch-Geburtshilfliche Rundschau 40 (3-4):119124. Schneider, C.E. 1996. The practice of autonomy. Oxford: Oxford Universtiy Press.

The Ethics of Consent and Choice in Prenatal Screening

239

Shakespeare, T. 1998. Choices and rights: Eugenics, genetics and disability equality. Disability and Society 13 (5):665. —. 1999. Manifesto for genetic justice. Social Alternatives 18 (1):29. —. The Danger of Disability Prejudice. 2001 (cited 1st September 2001. Available from www.genecrc.org.site/hi/hi3z.html. Shanahan, M.J., P.E. Smith, S. Ryan, and R.F. Carter. 2005. Carter's Criminal Law of Queensland. Australia: Lexis Nexis Butterworths. Shelford, G. 2003. Risk, statistics and the individual. British Medical Journal 327 (7417). Sherwin, S. 1992. No longer patient. Feminist ethics and health care. Philadelphia: Temple University Press. —. 1998. The politics of women's health : exploring agency and autonomy. The Feminist Health Care Ethics Research Network. Philadelphia: Temple University Press. —. 2001. Diagnosis difference: The moral authority of medicine. Hypatia 16 (3):172. Silverman, H.J. 2000. Organisational ethics in health care organisations: Proactively managing the ethical climate to ensure organisational integrity. HEC Forum 12 (3):202-215. Skolbekken, J. 1995. The risk epidemic in medical journals. Social Science & Medicine 40 (3):291-305. Slovic, P., M.L. Finucane, E. Peters, and D.G. MacGregor. 2004. Risk as analysis and risk as feelings: Some thoughts about affect, reason, risk and rationality. Risk Analysis 24 (2):311- 322. Snijders, R., P. Noble, A. Souka, and K.H. Nicolaides. 1998. UK multicentre project on assessment of risk of trisomy 21 by maternal age and foetal nuchal translucency thickness at 10-14 weeks gestation. The Lancet 352 (9125):343-346. Solomon, M.Z. 2005. Realising bioethics goals in practice: Ten ways 'is' can help 'ought'. The Hastings Center Report (July-August):40-47. Somerville, M. 2006. The ethical imagination: Imagining an ethics for the future. Carlton: Melbourne University Press. Spencer, K., and N.J. Cowans. 2007. ADAM12 as a marker of trisomy 18 in the first and second trimester of pregnancy. Journal of Maternal Fetal & Neonatal Medicine 20 (9):645. Spencer, K., C. Spencer, M. Power, C. Dawson, and K.H. Nicolaides. 2003. Screening for chromosomal abnormalities in the first trimester using ultrasound and maternal serum biochemistry in a one stop clinic: A review of three years prospective experience. British Journal of Obstetrics and Gynaecology. 110 (3):281-286.

240

References

Stapleton, H., M. Kirkham, and G. Thomas. 2002. Qualitative study of evidence based leaflets in maternity care. British Medical Journal 324 (7338):639-643. Stephens, Mark B., Ruby Montefalcon, and David A. Lane. 2000. The Maternal Perspective on Prenatal Ultrasound. Journal of Family Practice Journal of Family Practice J1 - Journal of Family Practice 49 (7):601604. Stephenson, P. 2006. Before the teaching begins: managing patient anxiety prior to providing education. Clinical Journal of Oncology Nursing 10 (2):241-245. Stewart, M. 1995. Effective physician- patient communication and health outcomes: A review. Canadian Medical Association Journal 152:1423-1433. —. 2001. Towards a global definition of patient centred care. British Medical Journal 322:444-446. —. 2001. Whose evidence counts? An exploration of health professionals' perceptions of evidence-based practice, focusing on the maternity services. Midwifery 17:279-288. Stewart, M., J Belle- Brown, H Boon, J Galajda, L Meredith, and M Sangster. 1999. Evidence on patient- doctor communication. Cancer Prevention and Control 3 (1):25-30. Stewart, M., J Belle- Brown, A. Donner, I. McWinney, J. Oates, W. Weston, and J. Jordan. 2000. The impact of patient - centred care on outcomes. The Journal of Family Practice 49 (9):796 - 804. Stewart, M., J Belle- Brown, W. Weston, I. McWhinney, C. McWilliam, and T. Freeman. 2003. Patient - centred medicine: Transforming the clinical method. Edited by M. Stewart, J. Belle- Brown and T. Freeman. 2nd ed, Patient Centred Care Series. Oxon.: Radcliffe Medical Press. Straton, J., K. Godman, V. Gee, and Q. Hu. 2006. Induced abortions in Western Australlia, 1999-2005. Report of the WA Abortion Notification System. Perth: Department of Health. Street, R.L., H.S. Gordon, M.M. Ward, E. Krupat, and R.L. Kravitz. 2005. Patient Participation in Medical Consultations: Why Some Patients are More Involved Than Others. Medical Care 43 (10):960. Suter, S.M. 2002. The routinisation of prenatal testing. American Journal of Law, Medicine and Ethics. 28:233-270. Tankard - Reist, M. 2005. Defiant birth: Spinifex Press. Taylor, C. 1989. Sources of the self. Cambridge: Harvard University Press.

The Ethics of Consent and Choice in Prenatal Screening

241

Taylor, K. 1996. Why psychological models of adult development are important... Adult Education Quarterly 47 (1):54. Tennstedt, C., R. Chaoui, R. Bollman, H. Korner, and M. Dietel. 1998. Correlation of prenatal ultrasound diagnosis and morphological findings of foetal autopsy. Pathol Res Pract 194 (10):721-724. Thornton, J.G., J. Hewison, R.J. Lilford, and A. Vail. 1995. A randomised trial of three methods of giving information about prenatal testing. British Medical Journal 311:1127-1130. Tomlinson, T. 1997. Perplexed about narrative ethics. In Stories and their limits, edited by J. Lindeman - Nelson. New York: Routledge. Tong, R. 2002. Teaching Bioethics in the New Millennium: Holding Theories Accountable to Actual Practices and Real People. Journal of Medicine and Philosophy 27 (4):417 - 432. Tonti -Filippini, N. 2004. Smoking cessation and elective surgery:The cleanest cut. Medical Journal of Australia 181 (5):283. Towle, A., and W. Godolphin. 1999. Framework for teaching and learning lnformed shared decision making. British Medical Journal 319:766 771. Towle, A., W. Godolphin, J. Manklow, and H. Wiesinger. 2003. Patient perceptions that limit a community based intervention to promote participation. Patient Education and Counselling 50:231 - 233. Tyzack, K., and E. M. Wallace. 2003. Down syndrome screening: What do health professionals know? doi:10.1046/j.0004-8666.2003.00070.x. The Australian and New Zealand Journal of Obstetrics and Gynaecology 43 (3):217-221. Urban - Walker, M. 1993. Keeping moral space open: New images of ethics consulting. The Hastings Centre Report 23 (2):33-40. —. 1998. Moral understandings: A feminist study in ethics. London: Routledge. —. 2003. Moral contexts. Oxford: Rowman & Littlefield Publishers, Inc. van den Berg, M., D. R. M. Timmermans, J. H. Kleinveld, E. Garcia, J. M. G. van Vugt, and G. van der Wal. 2005. Accepting or declining the offer of prenatal screening for congenital defects: test uptake and women's reasons. Prenatal Diagnosis 25 (1):84-90. Wald, N. J., W.J. Huttly, and A.K Hackshaw. 2003. Antenatal Screening for Down's Syndrome with the Quadruple Test. The Lancet (on-line via Proquest) 361 (9360):835-836. Watson, M, S. Hall, K. Langford, and T Marteau. 2003. Psychological Impact of the detenction of soft markers on routine ultasound scanning: A pilot study investigating the modifying role of information. Prenatal Diagnosis 22:569-575.

242

References

Wear, S. 1998. Informed consent: Patient autonomy and clinician beneficence within health care. 2nd ed. Washington .D.C.: Georgetown University Press. Weisberg, M., and J. Duffin. 1995. Evoking moral imagination. The Journal of Medical Humanities 16 (4):247-263. Wertz, D. C. 1998. Eugenics is alive and well. Science in Context 11:493510. Wertz, D. C., and J. C. Fletcher. 1998. Ethical and social issues in prenatal sex selection: A survey of geneticists in 37 nations. Social Science & Medicine 46 (2):255-273. West, H., and R. Bramwell. 2006. Do maternal screening tests provide psychologically meaningful results? Cognitive psychology in an applied setting. Journal of Reproductive and Infant Psychology 24 (1):61. Weston, W. 2001. Informed and shared decision making: the crux of patient centred care. Canadian Medical Association Journal 165 (4):438-9. Weston, W., and J. Belle- Brown. 1989. The importance of patients beliefs. In Communicating with medical patients, edited by M. Stewart and D. Roter. Newbury Park: Sage Publications. Whittle, M. 1997. Ultrasonographic "soft markers" of fetal chromosomal defects. Detecting them may do more harm than good. British Medical Journal 314 (918). Whynes, D.K. 2002. Receipt of information and women's attitudes towards ultrasound scanning during pregnancy. Ultrasound Obstetrics and Gynaecology 19:7-12. Widdershoven, G.A.M., and M.J. Smit. 1996. Ethics and narratives. In Ethics and process in the narrative study of lives, edited by R. Josselson. Thousand Oaks: Sage Publications. Wildes, K.W. 1997. Institutional identity, integrity and conscience. Kennedy Institute of Ethics Journal 7:413-419. Williams, C., P. Alderson, and B. Farsides. 2002. 'Drawing the line' in prenatal screening and testing: health practitioners' discussions. Health Risk & Society 4 (1):61-75. —. 2002. Is non-directiveness possible within the context of antenatal screening and testing? Social Science & Medicine 54 (3):339-347. —. 2002. Too many choices? Hospital and community staff reflect on the future of prenatal screening. Social Science & Medicine (H.W. Wilson SSA) 55 (5):743. —. 2002. What constitutes 'balanced information in the practitioners' portrayal of Down's syndrome? Midwifery 18 (3):230-237.

The Ethics of Consent and Choice in Prenatal Screening

243

Williams, C., J. Sandall, G. Lewando-Hundt, B. Heyman, K. Spencer, and R. Grellier. 2005. Women as moral pioneers? Experiences of first trimester antenatal screening. Social Science & Medicine 61 (9):19831992. Winch, C. 1998. The philosophy of human learning. London: Routledge. Woods, R.G., and R. Barrow. 1975. An introduction to philosophy of education. London: Methuen & Co. Ltd. Zamerowski, S. 1999. The psychosocial impact on high risk pregnant women of a non-invasive prenatal diagnostic test. Fetal Diagnosis and Therapy 14 (2). Zecca, G., E. C. Gradi, K. Nilsson, M. Bellotti, and et al. 2006. "All the rest is normal". A pilot study on the communication between physician and patient in prenatal diagnosis. Journal of Psychosomatic Obstetrics and Gynecology 27 (3):127.

INDEX A Amniocentesis 37 Anxiety 142-148 Autonomy 42 C Choice Constraints Institutional 61-87 Personal 121-148 Philosophical 41- 60 Social 89-119 Construction of 89-94 Communication Commitments and Barriers 73 Enhancing 209-211 Consent Informed 49-58 Presumed 58 Cost/benefit analysis 113-119 Counselling 78 D Disability Understanding of 105-113 Preventable costs of 113-119 E Education Adult learning 152-160 Institutional barriers to 70 Patient education in clinical care 149-182 Practitioner education 188 Supporting learning in clinical context 214 Ethics 17-21

Ethics, patient centred medicine and adult learning 178 Ethics and education 191-194 I Informing Blurred Accountability 70 Information and understanding 150-152 Accuracy and balance 211-214 Informed consent and choice 49-58 Institutional Constraints 61-87 L Legal Considerations 82-87 M Maternal serum screening 29 N Narrative 21-27, 96-97, 131-136, 219-225, 250-253 Method of research 23 Moral significance of 21 Narrative and Ethics 21-23 Nuchal Translucency 35 P Patient-centred care 206-209 Personal Constraints 121-148 Philosophical Constraints 41-60 Presumed Consent 58 Probability and Risk 134-142 R Reassurance and the ‘Desire to Know’ 121-130 Responsibility and Blame 101-105

246 Risk 130-135 Probability and risk perception 134-141 Psychological impact of 142148 Routine Testing and the ‘Normative’ Pathway 61-70 S Science Trust in 95-101 Challenges to 203-205

Index Social Constraints 89-119 Soft Markers 33-35 T Transformation of practice 183-220 Individual 205-218 Institutional 185-188 Policy 196-200 U Ultrasound 30