Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives (Philosophy and Medicine, 141) 303083185X, 9783030831851

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Philosophy and Medicine

P&M141

Anna-Henrikje Seidlein Sabine Salloch   Editors

Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives

Philosophy and Medicine Volume 141

Series Editors Søren Holm, The University of Manchester, Manchester, UK Lisa M. Rasmussen, UNC Charlotte, Charlotte, USA Founding Editors H. Tristram Engelhardt, Rice University, Houston, TX, USA Stuart F. Spicker, Renodo Beach, USA Editorial Board Member George Agich, National University of Singapore, Singapore, Singapore Bob Baker, Union College, Schenectady, NY, USA Jeffrey Bishop, Saint Louis University, St. Louis, USA Ana Borovecki, University of Zagreb, Zagreb, Croatia Ruiping Fan, City University of Hong Kong, Kowloon, Hong Kong Volnei Garrafa, International Center for Bioethics and Humanities, University of Brasília, Brasília, Brazil D. Micah Hester, University of Arkansas for Medical Sciences, Little Rock, AR, USA Bjørn Hofmann, Norwegian University of Science and Technology, Gjøvik, Norway Ana Iltis, Wake Forest University, Winston-Salem, NC, USA John Lantos, Childrens’ Mercy, Kansas City, MO, USA Chris Tollefsen, University of South Carolina, Columbia, USA Dr Teck Chuan Voo, Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore

The Philosophy and Medicine series is dedicated to publishing monographs and collections of essays that contribute importantly to scholarship in bioethics and the philosophy of medicine. The series addresses the full scope of issues in bioethics and philosophy of medicine, from euthanasia to justice and solidarity in health care, and from the concept of disease to the phenomenology of illness. The Philosophy and Medicine series places the scholarship of bioethics within studies of basic problems in the epistemology, ethics, and metaphysics of medicine. The series seeks to publish the best of philosophical work from around the world and from all philosophical traditions directed to health care and the biomedical sciences. Since its appearance in 1975, the series has created an intellectual and scholarly focal point that frames the field of the philosophy of medicine and bioethics. From its inception, the series has recognized the breadth of philosophical concerns made salient by the biomedical sciences and the health care professions. With over one hundred and twenty five volumes in print, no other series offers as substantial and significant a resource for philosophical scholarship regarding issues raised by medicine and the biomedical sciences. More information about this series at https://link.springer.com/bookseries/6414

Anna-Henrikje Seidlein  •  Sabine Salloch Editors

Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives

Editors Anna-Henrikje Seidlein Institute of Ethics and History of Medicine University Medicine Greifswald Greifswald, Germany

Sabine Salloch Institute of Ethics, History and Philosophy of Medicine Hannover Medical School Hannover, Germany

ISSN 0376-7418     ISSN 2215-0080 (electronic) Philosophy and Medicine ISBN 978-3-030-83185-1    ISBN 978-3-030-83186-8 (eBook) https://doi.org/10.1007/978-3-030-83186-8 © Springer Nature Switzerland AG 2022 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Preface

The contributions in this edited volume are the results of an international and interdisciplinary workshop for young scholars entitled “Professional Ethics at the End of Life”. The workshop was hosted by the Institute of Ethics and History of Medicine at the University Medicine Greifswald. It took place from 27 May to 1 June 2019 in Greifswald-Wieck (Mecklenburg-Western Pomerania, Germany). The workshop was made possible by the generous support of the German Federal Ministry of Education and Research (grant number 01GP1889). The international composition of the workshop group extended to scholars from Brazil, Germany, the United Kingdom, France, Malta, Switzerland and the US, with various academic and professional backgrounds, such as philosophy, theology, nursing, medicine, gerontology and psychology. During the workshop, the researchers joined to discuss their own projects related to professional ethics at the end of life and to identify further current ethical challenges and research gaps within this field. The main parts of the workshop were dedicated to the presentations of thirteen young scholars with subsequent discussions. The workshop, furthermore, included two expert sessions with senior researchers: Marta Spranzi (Paris, France) held an afternoon session on “Professional integrity at the end of life” and Christine Dunger (Witten/Herdecke, Germany) held a session on “Nurses’ professional role in end-of-life care”. In addition, the week-­ long meeting comprised a public evening lecture on “Professional-role obligations and assisted dying” given by Eric Vogelstein (Pittsburgh, US). This volume summarizes the key topics of the workshop structured in four parts: Contexts of Professional Practice at the End of Life, Professional Standards at the End of Life, Treatment Preferences and Professional Companionship at the End of Life and Joint Discussion Paper. The individual chapters are based on a further development of the contributions presented during the workshop. In addition, new international teams were built during the workshop to jointly realize publication ideas from a comparative perspective. Each manuscript has undergone a thorough internal open peer-review process to ensure a high quality and to promote the scientific skills of critically reviewing the work of other researchers.

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Part I: Contexts of Professional Practice at the End of Life Members of the health-care professions operate not only in complex, often highly structured organizations but also against the background of their own experiences as individuals and professionals. The framework of their decisions is, thus, shaped to a great extent by their personal attitudes and feelings as human beings and professionals. Professionals are confronted with various challenges emanating from institutional, legal and social contexts while caring for and accompanying people at the end of their lives. These can cause various emotions, such as anger, disgust, fear, sadness or shame. In order to understand better how professionals’ practices at the end of life are shaped by the context in which they take place and vice versa, the chapters in this part examine such fundamental issues as time, (un-)certainty and spiritual self-care. Elodie Camier-Lemoine in her essay “Palliative Care between Certainty and Uncertainty. Which Philosophy of Death at the End of Life?” critically assesses current end-of-life practices that concentrate mainly on the conditions of dying but tend to forget the character of death itself. She draws our attention to the tension in which palliative care operates: as a medical specialization, it is also committed to the clinical approach that focuses on skills and knowledge. However, as palliative care is intrinsically concerned with human finiteness, it is also confronted with the corresponding (un-)certainty of death. Eva Kuhn, Elodie Camier-Lemoine, Bradley Lonergan and Christine Dunger further take up (un-)certainty as an everyday experience that is rarely reflected upon in their chapter “An Ethical Discussion of (Un-)Certainty at the End of Life: Exemplification by Means of Continuous Deep Sedation and Advance Directives”. They analyse the tension in which health-care professionals find themselves on a daily basis: on the one hand, clinicians strive for certainty and, on the other hand, uncertainty can never be completely overcome. A fact that is especially true for end-­ of-­life care. They use a philosophical-anthropological approach to explore the phenomenon of uncertainty comprehensively and examine the convergence of underlying theoretical assumptions. Using the examples of two complex practices relevant for the end of life (Continuous Deep Sedation and Advance Directives), they apply their results from a comparative perspective between the United Kingdom, France and Germany and draw practical conclusions. In the third chapter “Why me? – The Concept of Physicians’ Spiritual Self-Care. A Contribution to Professional and Organisational Ethics”, Eva Kuhn points out the relevance of “spiritual care”  – a concept that is currently predominantly addressed to patients – for health-care professionals. After conceptual clarifications, she elaborates on the spiritual self-care of professionals, transfers the concept to organizational ethics and demonstrates its importance for practice in health-care organizations. Kuhn makes a plea for overcoming the neglect of health-care professionals’ self-care. Finally, she discusses critically whether the approach might entail a risk for professional ethics, respectively, endanger personal integrity.

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Anna-Henrikje Seidlein, Sabine Salloch and Marta Spranzi shed light on the “The Role of Time in End-of-life Decision-making at the Intensive Care Unit in France and Germany”. Referring to data from two qualitative studies – one French interview study and one German study using non-participant observations and interviews – with health-care professionals practicing at intensive care units, they reflect on the meaning and influence of different aspects of time for therapy decisions. They conclude that even if the French and German cultural and legal decision-­ making frameworks concerning professional practices at the end of life differ, ethical problems regarding the timing of decisions are quite similar. Therefore, there are other, at least equally relevant, influencing factors on decisions that require more attention than they receive currently.

Part II: Professional Standards at the End of Life Being a member of a profession involves certain obligations towards oneself, colleagues and society. Professionals have a high reputation among the general population and enjoy a high degree of trust. Health-care professionals set high standards for the quality that they strive to achieve with their practice. These standards concern, for example, fundamental aspects, such as their own basic education and further training, and practical and political issues, such as equal access to health-care resources for all individuals. Nevertheless, the professionals’ own goals are not always achieved due to problems in the health-care system, at the institutional level and/or the individual professional’s situation in practice. As a result, ethical problems and dilemmas can arise whose solution requires the professionals’ responsibility and judgement. Guilherme Gryschek gives the reader insights into the Brazilian health-care system and the characteristics of the physician-patient relationship. It emerges that Brazil shows interesting differences compared to European countries especially regarding the setting of priorities at the end of life. In his chapter “Brazilian Medical Professional Ethics in Palliative and End-of-life Care – Advances and Expectancies”, Gryschek further elucidates the meaning of palliative care and its dissemination in Brazil and concludes that the current situation shows serious flaws. He reflects critically on the patient-physician relationship and highlights a paradigm shift taking place at present which is also reflected in physicians’ professional ethics (e.g. ethical codices). The chapter closes with future perspectives of palliative care in Brazil and summarizes which ethical issues still need to be further discussed for better end-of-life care. Natalia Kyrtata describes the current legal and social framework for organ and tissue donation in the United Kingdom. She then investigates the problem that under the current opt-in approach, several families do not allow the organs of their loved ones to be donated despite the fact that that the potential donors themselves registered on the organ donor register. Kyrtata, thus, raises the question “Should the Family Be Allowed to Override a Patient’s Decision to Become an Organ Donor

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after Death?” Her ethical analysis focuses on the concept and meaning of consent in this context and the role of the family with corresponding rights and obligations. Her article gives some thought-provoking impulses to answer this difficult question. Andreas Mues, Tobias Weise and Axel Ekkernkamp report on a “Comparison of Self-assessed Competencies Regarding End-of-life Ethics between Physicians and Nursing Staff”. Their survey starts from the assumption that nurses’ vocational training and physicians’ university studies should provide them with basic ethical competencies. The authors investigate to what extent these competencies are successfully achieved and how they are applied in daily practice. One major insight is that the professionals consider their level of knowledge and competence as insufficient and that they would like to receive further training in this area. The results of the project serve as a basis for a tailored training programme for both occupational groups. Mara Kaiser, Eva Kuhn, Christopher Poppe and Henrike Voss provide the reader in their chapter “Blurring Boundaries at the End of Life in Home Care: A Look at Germany, Switzerland and the United Kingdom in the Light of Care Ethics” with an overview of a scarcely discussed problem: the blurring of boundaries between professionals and non-professionals (informal caregivers) that can be observed in the provision of care at the end of life. Using the example of care for individuals with dementia, a detailed analysis of the blurred nature of care at the end of life is carried out against the background of care ethics and from a comparative perspective.

 art III: Treatment Preferences and Professional P Companionship at the End of Life Concepts of a good life and a good death are manifold and so are the options for need-oriented and patient-centred end-of-life care. Patients’ right to self-­ determination is a high good in contemporary medicine, and there are several choices to be made by the patient between different options which reflect his/her respective values of a “good life” and a “good death”. Ethical conflicts can, for example, arise between professionals and patients when treatment goals differ and when patients demand something different from what the physicians perceive as “optimal care”. Despite the emphasis on patient autonomy, it can also be limited due to external factors, such as inequalities in access to health-care resources. How professionals make their decisions in daily practice, thus, plays a pivotal role in patients and families’ experience of (not) being cared for. Joëlle Azzopardi, Dorothy Gauci, Patricia A.  Parker, Neville Calleja, Jeff A. Sloan and Ray Zammit take the fact that it is currently unknown whether Maltese cancer patients wish to know their diagnosis and to what extent they want to be informed as a starting point. Their study “Maltese Perspectives on Breaking Bad News in Cancer: An Assessment of Patients’ Preferences”, thus, surveys Maltese patients’ preferences for receiving a cancer diagnosis and being involved in the

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decision-making process for certain therapies. The comparison with results from similar international studies shows interesting differences regarding the patient-­ physician relationship. Maddy French presents the present knowledge on access to specialist palliative care for socio-economically disadvantaged populations in the United Kingdom in her article “Socio-Economic Position and Access to Specialist Palliative Care: Evidence from the UK”. She depicts influencing factors regarding patients, professionals and the services that facilitate or hinder access to specialist palliative care. The presentation of data on the current situation is completed by an application of the model of “candidacy” to increase the understanding of (un)equal access to palliative care in the United Kingdom. Christine Dunger and Martin W. Schnell undertake a critical analysis of nurses’ professional role in end-of-life care, and their behaviour and values reflected in decision-making in their chapter “Professional Nurses’ Role in End-of-life Care. Ethical Reflections on Patient-Nurse Interaction and Nurses’ Decision-Making in Breathlessness Situations” Taking a qualitative study as an example, they use Goffman’s Framework Analysis as a theoretical lens to examine nurses’ professional decision-making in situations of breathlessness at the end of life.

Part IV: Joint Discussion Paper The position paper “Ethics and (Inter-)Professionalism in Health Care at the End of Life” summarizes the main overall findings of the international workshop and highlights the remaining questions and discussion points when considering all the positions and projects that have been presented during the workshop on professional ethics at the end of life. The position paper integrates the main ideas of all participants from an international, interprofessional and interdisciplinary perspective, outlines a research agenda and highlights practical implications for end-of-life care.

Greifswald, Germany  Anna-Henrikje Seidlein   Hannover, Germany Sabine Salloch

Acknowledgements

This edited volume could only be realized with the support of several individuals and institutions, to whom we would like to express our appreciation. We would like to express our sincere gratitude to the Federal Ministry of Education and Research, which considered our idea worth supporting and, thus, made the workshop and its publication possible. Furthermore, we would like to thank the Alfried Krupp Wissenschaftskolleg Greifswald for financial and organizational support with the public evening lecture. Moreover, this volume would not have been possible without the workshop participants’ and senior speakers’ active and enduring commitment to engage in interdisciplinary discussions on end-of-life ethics. The volume editors would, therefore, like to thank all of them for the inspiring week spent together and the excellent teamwork in the preparation for this book. We would also like to thank Springer and the editors of the series Medicine and Philosophy for their trust in our proposal and for the professional support during the publication process. Finally, we would like to thank Philip Saunders for his enduring professional and efficient support in proofreading the manuscripts.

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Contents

1 Introduction����������������������������������������������������������������������������������������������    1 Anna-Henrikje Seidlein and Sabine Salloch Part I Contexts of Professional Practice at the End of Life 2 Palliative Care Between Certainty and Uncertainty. Which Philosophy of Death at the End of Life?������������������������������������   11 Elodie Camier-Lemoine 3 An Ethical Discussion of (Un-)Certainty at the End of Life: Exemplification by Means of Continuous Deep Sedation and Advance Directives���������������������������������������������������������������������������   23 Eva Kuhn, Elodie Camier-Lemoine, Bradley Lonergan, and Christine Dunger 4 Why Me? – The Concept of Physicians’ Spiritual Self-Care: A Contribution to Professional and Organisational Ethics�����������������   55 Eva Kuhn Part II Professional Standards at the End of Life 5 The Role of Time in End-of-Life Decision-­Making at the Intensive Care Unit in France and Germany: Qualitative-­Empirical Data and Ethical Reflection������������������������������   75 Anna-Henrikje Seidlein, Sabine Salloch, and Marta Spranzi 6 Brazilian Medical Professional Ethics in Palliative and End-of-Life Care – Advances and Expectancies����������������������������   95 Guilherme Gryschek 7 Should the Family Be Allowed to Override a Patient’s Decision to Become an Organ Donor after Death?������������������������������  107 Natalia Kyrtata xiii

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8 Comparison of Self-Assessed Competencies Regarding End-of-Life Ethics between Physicians and Nursing Staff������������������  121 Andreas Mues, Tobias Weise, and Axel Ekkernkamp 9 Blurring Boundaries at the End of Life in Home Care: A Look at Germany, Switzerland and the United Kingdom in the Light of Care Ethics����������������������������������������������������������������������  137 Mara Kaiser, Eva Kuhn, Christopher Poppe, and Henrike Voß Part III Treatment Preferences and Professional Companionship at the End of Life 10 Maltese Perspectives on Breaking Bad News in Cancer: An Assessment of Patients’ Preferences������������������������������������������������  165 Joëlle Azzopardi, Dorothy Galea Gauci, Patricia A. Parker, Neville Calleja, Jeff A. Sloan, and Raymond Zammit 11 Socio-economic Position and Access to Specialist Palliative Care: Evidence from the UK������������������������������������������������������������������  185 Maddy French 12 Professional Nurses’ Role in End-of-Life Care. Ethical Reflections on Patient-Nurse Interaction and Nurses’ Decision-Making in Breathlessness Situations����������������  203 Christine Dunger and Martin W. Schnell Part IV Joint Discussion Paper 13 Ethics and (Inter-)Professionalism in Health Care at the End of Life: A Position Paper������������������������������������������������������  223 Joëlle Azzopardi, Elodie Camier-Lemoine, Maddy French, Guilherme Gryschek, Mara Kaiser, Eva Kuhn, Natalia Kyrtata, Bradley Lonergan, Andreas Mues, Christopher Poppe, Sabine Salloch, Anna-Henrikje Seidlein, Roland Simon, Anne Volmering-Dierkes, and Henrike Voß Index������������������������������������������������������������������������������������������������������������������  231

Chapter 1

Introduction Anna-Henrikje Seidlein and Sabine Salloch

This edited volume focuses on health-care professionals’ perspectives on ethical concerns at the end of life, while choosing different country-specific approaches and international comparisons. The overall orientation and structure of the book emerged out of three main background ideas. Firstly, approaches towards the care of seriously ill and dying patients and their relatives are, to a large extent, influenced by the socio-cultural environment (e.g. religious affiliation, geographical location, nationality). Cross-country comparisons show that culturally influenced attitudes at the end of life can differ significantly (Miccinesi et al. 2005). Thus, ethical questions, interaction and decisions at the end of life are strongly shaped by these factors, from the side of not only the professionals (Sprung et  al. 2007) but also the laypeople (Inthorn et  al. 2015; Schweda et al. 2017). Secondly, accompanying patients at the end of their lives and their families is a task for multi-professional teams in which, for example, physicians, nurses, chaplains and others – each with their own tasks, competencies and values – are regularly involved. The encounter of the diversity of norms and values held by the different professionals – not least against the background of changing societal structures in age and morbidity – can result in inter- and intraprofessional challenges in everyday practice. The requirement of interprofessional co-operation is, thus, faced with empirical findings indicating that this much-needed collaboration does not

A.-H. Seidlein (*) Institute of Ethics and History of Medicine, University Medicine Greifswald, Greifswald, Germany e-mail: [email protected] S. Salloch Institute of Ethics, History and Philosophy of Medicine, Hannover Medical School, Hanover, Germany e-mail: [email protected] © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_1

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always function as intended. However, the goal of “continuous communication and collaboration between the different professions and disciplines” (European Association for Palliative care 2009) remains uncontested. Thirdly, research on the practice of end-of-life care is carried out in a wide range of normative and empirical disciplines (e.g. philosophy, law, theology, medical ethics, sociology, psychology). These disciplines, however, do not always enter into dialogue with each other, although professional practice, theory and research could benefit from the knowledge and/or the methods of the other parties. Health-care practitioners, for example, often experience conflicts in their practice, but lack the appropriate language to articulate and analyse them. Philosophers, on the other hand, have the competence to systematically analyse the meaning of terms and underlying normative premises which can contribute to the understanding of the conflicts and solve them co-operatively. This edited volume intends to make a contribution to this interdisciplinary and interprofessional dialogue through its wide range of approaches from philosophical analyses to research projects that aim directly to improve health-care practice. The guiding concepts which play a role across all contributions are the overall idea of health-care professionalism and key tenets of a professional ethics at the end of life.

1.1  Health-Care Professions and End-of-Life Care The theory of professions, especially situated in sociology, has been striving for many years to achieve a conceptual clarification of what constitutes a profession. There is a commonly accepted minimal agreement that “specialized knowledge” (Freidson 2001, 1), and professional self-control and -organisation (Freidson 2001, 1  f.), “monopoly” and “freedom of judgment, or discretion in performing work” (Freidson 2001, 3) are integral components of being a professional. A tentative definition could, thus, understand a professional “as someone with specialized knowledge in the service of some value that expresses a vital social need, who belongs to an organization that is self-regulating and has a monopoly over its practice” (Goldman 2019, 483). In addition, there are also many empirical efforts to try to understand professionalism in healthcare better – also regarding subdisciplines of the profession, such as emergency medicine (Hoonpongsimanont et  al. 2018) or perioperative nursing (Whiteside 2016). Furthermore, various attempts to assess the shape of professionalism in different samples, such as critical care nurses (Castro et al. 2016) or medical students (Reimer et al. 2019), have been published. Not least, several working groups are concerned with the question of how professionalism can and should be taught best (Birden et al. 2013). There are some interprofessional specialities in health care dealing explicitly with patients with a life-limiting illness and their next-of-kin, such as palliative care and hospice care. Nevertheless, the accompaniment of individuals at the end of their lives is part of the professional work in many fields of health care (e.g. intensive care, neonatology, oncology). Concerning the term “end of life”, a clear definition

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of what it means, respectively, which period of time it covers (Izumi et al. 2012), is missing. Even if the goals and practices of palliative/hospice care and end-of-life care are pretty similar and show several overlaps, it is, nevertheless, useful and necessary to distinguish between both these concepts (European Association for Palliative care 2009). Palliative care takes place at the end of life, but it begins much earlier during the illness trajectory than end-of-life care does. It is uncontested that the complex needs of patients and their families at the end of life can be met only through a multitude of health-care providers (e.g. nurses, physicians, pastoral carers, occupational therapists, psychologists). Thus, very good and thorough interprofessional collaboration is the prerequisite for what can be perceived as “good care” at the end of life (Pfaff and Markaki 2017). The status as a profession remains uncontested for some of these occupational groups, whereas for others, the questions whether they qualify as a profession still remains under discussion. Differences emerge especially from an international perspective, because education, social recognition and legal frameworks for the health-care occupations depend on the different national contexts. Vocational training for nurses in Germany, for example, still does not regularly take place at university and, thus, nursing in Germany has a low share of academic training. The same holds true for the self-regulation of nurses in Germany, where nursing “chambers” (“Kammern”; as an analogy to chambers of physicians) are still under discussion and implemented only in a few federal states (Börsch 2019). Thus, nurses in Germany are still regarded as semi-professionals. What increases the complexity is the fact that self-assessment and third-party assessment, for example, between nurses and the population in general, on the status of being a profession or not do not always agree (Girvin et al. 2016). As a result, it is possible that the occupational group concerned perceives itself as a profession, but the surroundings do not. This can lead to misunderstandings, hierarchical problems and conflicts regarding competence.

1.2  Professional Ethics at the End of Life Professions have set high standards for their work, but they are also discussed critically. The status of a profession is also accompanied by considerable power that comes along with a high responsibility for ensuring ethical standards of care. Thus, “Professional roles can provide both a scaffold for virtue and a mask for vice” (Cribb and Gewirtz 2015, 18). These “two sides” of a profession are particularly relevant regarding the discussion of ethical issues. On the one hand, there are problems which are perceived as ethically problematic by the professionals themselves, on the other hand, there are also issues which are considered as ethically problematic from the point of view of those concerned or by outsiders but which are not perceived as ethical issues by the members of the profession due to different reasons (e.g. adherence to fixed routines, lack of critical thinking, maintaining hierarchies). Brecher (2014, 239) even argues “that to be ‘professionally’ ethical is at best ambiguous, if not in fact bizarre” and that professional codes of ethics “prevent rather than

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encourage moral thought and moral action” (Brecher 2014, 243). Professional codes of ethics – such as the “ICN Code of Ethics for Nurses” (International Council of Nurses 2012) or the “Declaration of Geneva” for physicians (World Medical Association 2018) reflect the values that are supposed to be lived by the profession. They explain the moral concepts and norms inherent in a profession, provide orientation and also include statements on malpractice. In addition to professional codes of ethics, there are manifold position statements of professional bodies on controversial issues at the end of life which explain the normative role expectations and obligations, for example, regarding assisted suicide. The ethical legitimacy of such position statements is, however, also contested (Vogelstein 2016, 2019). Charters and position statements on professionalism in health care aim to advance the core values of the profession, on the one hand, and to improve the overall quality of health care, on the other hand. The “Charter on Medical Professionalism in the New Millennium: A Physician Charter” (ABIM Foundation et al. 2002), for example, depicts three fundamental moral principles: “primacy of patient welfare”, “patient autonomy” and “social justice”, and a set of ten professional corresponding responsibilities (inter alia, the “Commitment to improving quality of care”, “Commitment to maintaining appropriate relations with patients” and “Commitment to maintaining trust by managing conflicts of interest”) that result from these fundamental moral principles. Thus, existing charters and position statements on professionalism in health care already refer to important ethical concepts, such as beneficence, patient autonomy and justice, but have two serious limitations. Firstly, they are not explicitly dedicated to concrete contexts of professional practice such as the end of life. Health-care professionals, however, are confronted with unique challenges on a daily basis when caring for patients at the end of life. In the first place, being frequently confronted with dying and death impacts on the professionals’ inner life and wellbeing. They face their own mortality due to the existential threatening situation of the patients and their families with which they are involved. Responding to others’ needs and emotions, they are reminded of their own deaths: facing others dying and death means to face one’s own mortality. This can be experienced as both a source of enrichment (e.g. conscious living) and a threat (e.g. increased risk of compassion fatigue and burnout). In addition, they are potentially engaged in practices such as assisted dying, terminal sedation or organ donation. Each of these practices has controversial aspects and might lead to the moral uncertainty of those involved. In summary, it can be stated that professionals in interprofessional teams accompanying individuals at the end of their lives encounter very special challenges which make a separate consideration of such contexts appropriate and necessary. Secondly, most documents on professional ethics refer explicitly to only one profession, for example, either medical professionalism (Abim Foundation et  al. 2002) or nursing professionalism. They, thus, neglect the critical aspect of interprofessionalism as a key concept in health care. However, interprofessionalism entails special challenges, such as blurring boundaries between the professional roles or the need for an appreciative and ongoing communication. Only recently have there been attempts to include and strengthen the interprofessional perspective on

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health-care organisations, such as in the “Charter on Professionalism for Health Care Organizations” (Egener et  al. 2017). The Charter stresses, under the topic “Organizational culture”, that the “social capital” (Egener et  al. 2017, 1093) is equally important – or maybe even more important – than the organisations’ “financial capital”. A key aspect towards their success in high-quality patient care is, thus, that hospital leaders must demand and facilitate interprofessional collaboration. The goals and claims of professionals accompanying patients at the end of their lives – especially in hospice and palliative care – are, nevertheless, holistic, which makes it particularly difficult to distinguish between the professions and between “the personal” and “the professional role” (Sanders et al. 2012). It is one of the self-given obligations of professionals to negotiate proximity and distance to their patients in such a way that their own health and abilities are maintained, as losing “professional distance” can lead to harm for both the patient and the professional. However, the holistic nature of end-of-life care impedes this duty. In mirroring 1 week of collaboration among young international researchers, this edited volume can make a first contribution to bridge some of the gaps mentioned above. It contributes to further developing the theory on and practical insights into health-care professionalism at the end of life from an international and interprofessional perspective.

References ABIM Foundation, American Board of Internal Medicine, ACP-ASIM Foundation, American College of Physicians-American Society of Internal Medicine, and European Federation of Internal Medicine. 2002. Medical professionalism in the new millennium: A physician charter. Annals of Internal Medicine 136: 243–246. https://doi.org/10.7326/0003-­4819-­136-­3-­ 200202050-­00012. Birden, H., N. Glass, I. Wilson, M. Harrison, T. Usherwood, and D. Nass. 2013. Teaching professionalism in medical education: a Best Evidence Medical Education (BEME) systematic review. BEME guide no. 25. Medical Teacher 35: e1252–e1266. https://doi.org/10.3109/ 0142159X.2013.789132. Börsch, H.-J. 2019. Die Landespflegekammer Rheinland-Pfalz. Ein Bericht über die erste Pflegekammer Deutschlands. In Pflege an der Grenze, ed. R. Münnich and J. Kopp, 137–147. Wiesbaden: Springer VS. Brecher, B. 2014. What is professional ethics? Nursing Ethics 21: 239–244. https://doi. org/10.1177/0969733013484485. Castro, E., E. Click, S. Douglas, and I. Friedman. 2016. The professionalism of critical care nurse fellows after completion of the Critical Care Nurse Fellowship Program. Journal for Nurses in Professional Development 32: 87–93. https://doi.org/10.1097/NND.0000000000000226. Cribb, A., and S. Gewirtz. 2015. Professionalism, key themes in health and social care. Cambridge/ Malden: Polity. Egener, B.E., D.J.  Mason, W.J.  McDonald, S.  Okun, M.E.  Gaines, D.A.  Fleming, B.M.  Rosof, D. Gullen, and M.L. Andresen. 2017. The charter on professionalism for health care organizations. Academic Medicine 92: 1091–1099. https://doi.org/10.1097/ACM.0000000000001561. European Association for Palliative care. 2009. White paper on standards and norms for hospice and palliative care in Europe: Part 1 recommendations from the European Association for Palliative care. European Journal of Palliative Care 16: 278–289.

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Freidson, E. 2001. Professionalism: The third logic. Cambridge: Polity Press. Girvin, J., D. Jackson, and M. Hutchinson. 2016. Contemporary public perceptions of nursing: A systematic review and narrative synthesis of the international research evidence. Journal of Nursing Management 24: 994–1006. https://doi.org/10.1111/jonm.12413. Goldman, A. 2019. Moral epistemology and professional codes of ethics. In Routledge handbook of moral epistemology, ed. A. Zimmerman, K. Jones, and M. Timmons, 482–492. New York/ Oxon: Routledge. Hoonpongsimanont, W., P.K. Sahota, Y. Chen, M. Patel, T. Tarapan, D. Bengiamin, K. Sutham, et al. 2018. Physician professionalism: Definition from a generation perspective. International Journal of Medical Education 9: 246–252. https://doi.org/10.5116/ijme.5ba0.a584. International Council of Nurses. 2012. The ICN code of ethics for nurses.http://www.old.icn.ch/ who-­we-­are/code-­of-­ethics-­for-­nurses/. Accessed 19 Jan 2020. Inthorn, J., S. Schicktanz, N. Rimon-Zarfaty, and A. Raz. 2015. “What the patient wants…”: Lay attitudes towards end-of-life decisions in Germany and Israel. Medicine Health Care and Philosophy 18: 329–340. https://doi.org/10.1007/s11019-­014-­9606-­5. Izumi, S., H. Nagae, C. Sakurai, and E. Imamura. 2012. Defining end-of-life care from perspectives of nursing ethics. Nursing Ethics 19: 608–618. https://doi.org/10.1177/0969733011436205. Miccinesi, G., S. Fischer, E. Paci, B.D. Onwuteaka-Philipsen, C. Cartwright, A. van der Heide, T. Nilstun, M. Norup, F. Mortier, and Eureld consortium. 2005. Physicians’ attitudes towards end-of-life decisions: A comparison between seven countries. Social Science and Medicine 60: 1961–1974. https://doi.org/10.1016/j.socscimed.2004.08.061. Pfaff, K., and A.  Markaki. 2017. Compassionate collaborative care: An integrative review of quality indicators in end-of-life care. BMC Palliative Care 16: 65. https://doi.org/10.1186/ s12904-­017-­0246-­4. Reimer, D., R. Russell, B.B. Khallouq, C. Kauffman, C. Hernandez, J. Cendan, and A. Castiglioni. 2019. Pre-clerkship medical students’ perceptions of medical professionalism. BMC Medical Education 19: 239. https://doi.org/10.1186/s12909-­019-­1629-­4. Sanders, S., K.  Bullock, and C.  Broussard. 2012. Exploring professional boundaries in end-of-­ life care: Considerations for hospice social workers and other members of the team. Journal of Social Work in End-of-Life & Palliative Care 8: 10–28. https://doi.org/10.1080/15524256. 2012.650671. Schweda, M., S. Schicktanz, A. Raz, and A. Silvers. 2017. Beyond cultural stereotyping: Views on end-of-life decision making among religious and secular persons in the USA, Germany, and Israel. BMC Medical Ethics 18: 13. https://doi.org/10.1186/s12910-­017-­0170-­4. Sprung, C.L., P.  Maia, H.H.  Bulow, B.  Ricou, A.  Armaganidis, M.  Baras, E.  Wennberg, et  al. 2007. The importance of religious affiliation and culture on end-of-life decisions in European intensive care units. Intensive Care Medicine 33: 1732–1739. https://doi.org/10.1007/ s00134-­007-­0693-­0. Vogelstein, E. 2016. Professional hubris and its consequences: Why organizations of health-care professions should not adopt ethically controversial positions. Bioethics 30: 234–243. https:// doi.org/10.1111/bioe.12186. ———. 2019. Evaluating the American Nurses Association’s arguments against nurse participation in assisted suicide. Nursing Ethics 26: 124–133. https://doi.org/10.1177/0969733017694619. Whiteside, D. 2016. Perioperative nurse leaders and professionalism. AORN Journal 104: 133–144. https://doi.org/10.1016/j.aorn.2016.06.003. World Medical Association. 2018. WMA declaration of Geneva. https://www.wma.net/policies-­ post/wma-­declaration-­of-­geneva/. Accessed 25 Feb 2020.

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Anna-Henrikje Seidlein  is a research fellow at the Institute of Ethics and History of Medicine at University Medicine Greifswald (Germany). She holds a bachelor’s and master’s degree in Nursing Science and obtained her doctoral degree in Medical Ethics. She has a background in intensive care nursing and clinical ethics consultation. Her main research focus lies on socio-empirical research regarding ethical questions associated with health-care practices. Sabine Salloch  is a professor and head of the Institute of Ethics, History and Philosophy of Medicine, Hannover Medical School (Germany). She has a background in medicine and philosophy and specialises in bioethical theory, empirical-­ethical research and medical professionalism.

Part I

Contexts of Professional Practice at the End of Life

Chapter 2

Palliative Care Between Certainty and Uncertainty. Which Philosophy of Death at the End of Life? Elodie Camier-Lemoine

2.1  Introduction Even though death is usually considered as a classical philosophical subject, an analysis of Western societies allows for a deeper understanding of what philosophy calls “finiteness” from a not exclusively philosophical approach. More specifically, medicine is now emerging as a relevant approach to reinterpret the issues of a theory of death and a practice around death. These two dimensions can be observed in the end-of-life field, specifically in palliative care. While the question of the “conditions” of dying is a prominent feature of the whole debate and of the singular concerns, the more general dimension of “death” is an interesting way of grasping the ethical and metaphysical issues of this practice linked directly to death. Palliative care belongs to a contemporary medical model and, at the same time, is a discipline that calls for a philosophical reflection, in so far as the dimension of finiteness is deeply rooted in it. Thus, the aim at the crossroads of a practice around death, palliative care and a theory of death, possibly found in the philosophical approach, is to understand the inexorable uncertainty of death at the very heart of palliative care. Death has become an increasingly shared object of attention since the second half of the twentieth century (the period of the emergence of palliative care). Indeed, a reflection is already present in the humanities.1 More particularly, it is with Vladimir Jankélévitch’s philosophy (1957, 2003) that our interest comes  The theme of death is treated by several disciplines: sociology – Morin (1951), anthropology – Thomas (1975), history – Ariès (1975) and philosophy – Jankélévitch (2017 [1977]). 1

E. Camier-Lemoine (*) Center of Ethics, Region Auvergne Rhône-Alpes, Claude Bernard University – Laennec, School of Medicine, Lyon, France e-mail: [email protected] © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_2

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to life, precisely because his theory deals with the question of death in its existential, relational, moral and metaphysical scope. Moreover, as Frederic Worms recently pointed out, “the way in which Jankelevich’s book included the affirmation of the mystery of death, and even the stubborn maintenance of this mystery, the way in which it stood up to it, without giving in to it and without cancelling it: all this was a challenge” (Jankélévitch 2017[1977]; author’s translation) Such a mystery implies the uncertainty of death, which appears as a relevant concept to reflect upon the practice of palliative care, and thus, contribute to the whole reflection of the book on professionalism at the end of life. The latter is essential and must be analysed regarding palliative care. Indeed, we can point out a tension inside palliative care. As a medical discipline, palliative care has to be guided by some certainties. It will be relevant to underline in what ways they guide and support the professionalism at the end of life. However, the daily confrontation with death implies uncertainty. The specificity of uncertainty is linked to the coming of death. If it is generally known that death will come for everybody, sooner or later, how can we think about it and conceive a care closely linked to death and thus, consider it in the everyday professional practice? Consequently, I would like to answer to this question: how, with Jankélévitch’s philosophy, can we provide a philosophical reading of palliative care? Thanks to a close reading of Jankélévitch’s philosophy of death, I suggest analysing the paradox of death and its implications for the description of palliative care. I will deal then with the relationship to death, according to the distinction made by Jankélévitch between the first, second and third persons, in order to have a better understanding of the position of each person involved in palliative care. I need to point out that the reading of palliative care focuses on the French context, where palliative care, and more generally end of life, is regulated by laws and national guidelines (see also Kuhn et al. in this volume).

2.2  Why Vladimir Jankélévitch? First of all, I would like to express a few words regarding Jankélévitch’s philosophy. His philosophy of death allows one to analyse death and its consequences on people’s lives. For him, the goal of philosophy is to grasp the “elusive”, the “intangible”. For this purpose, his vocabulary clearly shows his willingness. We can read things such as “indescribable”, “ineffable”, “intangible” and “indeterminate”. His commentators say that those terms “Je ne sais quoi” et “Presque rien”,2 can describe his philosophy. It means precisely what reason cannot express absolutely. His philosophy aims to resist rationalization. Consequently, it appears relevant to look at palliative care with his theory of death, because it enables one to build the concept

2  Those two terms are the titles of three of his essays (Jankélévitch 1957): “La Manière et l’occasion”, “La méconnaissance et le malentendu” and “La volonté de vouloir”.

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of the uncertainty of death as a thing which resists rationalization and a kind of objectivity. We need to keep in mind our angle of study of such a question: how can we reflect upon a practice which partly escapes from reason inside the rationalized, scientific and objective context of medicine? His work has metaphysical and moral dimensions. More precisely, the concept of “ipseity” is central. It means that our existence is singular. We cannot really compare someone to another person because everyone has their own individuality. His theory of death is clearly relevant, because he tries to place it in personal existence. Death is so elusive. For him, it is the supreme problem which cannot be resolved. Moreover, death always means the death of someone in particular and it is a scandal. The philosopher does not claim to deny death, or forget the mystery, or solve the paradox. In addition, his thinking is not morbid but aims to develop the peculiar intensity of life thanks to a reflection on death. Consequently, his thinking expresses something peculiar about life: because of death, life is supposed to have a specific flavour. Consequently, we should be aware of the value and intensity of life. Several ideas in Jankélévitch’s thinking are interesting when discussing the link between Jankélévitch and palliative care regarding this idea of uncertainty. We have to be precise that Jankélévitch did not know palliative care in the way that it exists nowadays. However, he accurately felt the huge place medicine and innovations that were taking place at that time had and the potential outcomes for a theory of death. Moreover, he expressed himself on many occasions about euthanasia (Jankélévitch 2003) and the way physicians could act at the end of a patient’s life. The concept of uncertainty has been the subject of many studies in France in recent years, particularly in the field of health care. A symposium called “Clinique de l’incertitude”3 was established in 2010. The initial goal was to understand the role of uncertainties and the constraints they can represent, particularly in interdisciplinary approaches. The various academic societies4 that are signatories to this project tend to suggest that although the reflection concerns health care in general, it is still very present in the fields of oncology, pain and, ultimately, palliative care. The goal of this organisation is to develop this theory of uncertainty at the end of life. As a result, one reflection was shared (Barruel and Bioy 2013), whose aim was to show how true person-centred relationships can be established when the dimensions of irrationality, unpredictability and uncertainty are taken into account in human health care, which cannot be defined or practiced as an exact science. Our goal is to develop the uncertainty and its links to certainty, with a close regard to a theory of death.

 https://cliniquedelincertitude.fr/ Accessed 16 February 2020.  AFSOS (Association Francophone des Soins Oncologiques [French-speaking Association for Supportive Oncological Care]), SFAP (Société Française d’Accompagnement et de soins Palliatifs [French Society for Palliative Care]), SFETD (Société Française d’Étude et de Traitement de la Douleur [French Society for the Study and Treatment of Pain]); SFPO (Société Française er Francophone de Psycho-Oncologie [French Society of Psycho-Oncology]). 3 4

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2.3  Death Is a Paradox First of all, death is a paradox. On the one hand, death is a certainty and, on the other hand, it is an uncertainty. Such a paradox can resonate with this Latin sentence often encountered in Jankélévitch’s book: Mors certa, hora incerta. (Jankélévitch 2017, 154) I would initially like to explain the general paradox and then give some details about the Latin sentence. Death is an event; something which is happening. We can know this event, have knowledge about it. A priori, death is not a philosophical problem. It is a physical, biological, demographic and administrative phenomenon. We have a scientific definition of death (Lecourt 2004, 752).5 We can talk about death with numbers, percentage or probabilities. We know that the definition of death in medicine has changed in the past. Consequently, Jankélévitch claims: “No mystery, just a natural law and normal phenomenon, where the impersonality of statistics and mean value remove the tragic dimension”. Medicine tries to fight against death and suffering. Palliative care, as a medical discipline, develops a practice at “the extreme of life” which needs to be guided by knowledge. Indeed, we must recognise that the palliative care approach has some singularities that indicate a specialized approach. From a medical point of view, Vincent Morel (2014, 1142) points out that some problems are specific to the end-­ of-­life period. Among them, we can mention pain, congestion, signs of agony or sedation. These situations require the development of knowledge and practices in line with these particular symptoms. Even if specialization can lead to “excesses”,6 it also enables significant improvements. The organisation of a discipline provides precision and the dissemination of knowledge. If neurology and gastroenterology, for example, are cutting-edge disciplines, it is because they have become increasingly specialized with the increase of knowledge. Consequently, medicine develops specific knowledge and skills and needs to have certainties about, for example, body, disease, suffering and medication. In the field of palliative care, research7 is

5  Death is the destruction of brain cells that leads to the cessation of cardiac and respiratory functions, or the reverse process, taking into account the solidarity of these functions, the cessation of the three major vital functions subsequently leading to the destruction of the body’s tissues.” (Lecourt 2004, 752; author’s translation) 6  I would like to precis something here. Vincent Morel insists on the specialized approach of palliative care to enhance the fact that we need to resist too much medicalization of palliative care. “The contribution of the human sciences is fundamental because they allow us to find with each patient, a healing response, by offering us a view of the sick person.” The integration of volunteers to support patients at the end of life, for example, shows that the palliative approach cannot only belong to a strictly biomedical approach. “This specificity of palliative care and the integration of volunteers is a major challenge to take the palliative approach out of a purely medical approach that must respond only to diagnostic and therapeutic approaches validated by evidence-based medicine criteria” (Morel 2014, 1141–1142). 7  Vincent Morel insists on the necessity of pursuing the development of this medical discipline. Indeed, if we analyse practice, publications, research and recommendations, Morel says that research needs to develop in order to clarify the boundaries of such a discipline. Moreover, the

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increasing in order to provide better care for patients (Delpierre et al. 2014).8 It is true that it remains a kind of uncertainty, but it is an epistemic one: the speciality is a young one and things which are unknown now could be known and mastered in the future. However, the question of the uncertainty of death remains entire. How can the scientific approach of palliative care deal with it? How can one organise practice and research? How can one share it with medical students? Consequently, the professionalism at the end of life implies the consideration of the knowledge health-care professionals need to master while taking into account this epistemic uncertainty. One way to face it is to follow a continuing education all along the career. We want to insist on this uncertainty, connected to the second part of the paradox. Indeed, we can deny that certainties are found in palliative care. But what about the deeper uncertainty linked to death? If death is an objective phenomenon, it is also a mystery. Jankélévitch says that we can (or cannot) “realise” the mystery of death, which means “become aware” of it. The uncertainty lies here when we understand that we know absolutely nothing about death. Expressing the paradox of death, between event and mystery, enables us to avoid a risk related to care: reducing the patient to their disease and the scientific knowledge we have about it. When we accept the mystery of death, it could mean that we consent to a kind of uncertainty and share it with patients, family and colleagues. Consequently, palliative care is singular. In addition to a need for scientificity (linked to death as a “phenomenon”), it calls for a broader reflection, particularly because of the confrontation with the unpredictability of death. Indeed, it leads to a deep metaphysical and existential questioning. “Palliative care, a very young speciality, is now developing on a scientific corpus in the field of medical sciences but must also take into account the knowledge of humanities. It is, therefore, also a question for the humanities to invest this question of the confrontation with death” (Morel 2014, 1142; author’s translation). This confrontation with death can imply a suffering, which needs to be supported in a very particular way. There is an extreme singularity when a person is suffering. The physician Bernadette Choteau (2014) underlines the “global suffering” of a patient in palliative care. One dimension of the suffering is caused by the proximity of death. “Spiritual suffering appears as soon as one becomes aware of its finitude. Some questions of meaning then emerge: meaning given to one’s life, meaning of illness, meaning of suffering? Or of no-­ meaning...?” (Choteau 2014, 196; author’s translation; see also Kuhn in this volume).

specificity of this discipline implies that one must develop one’s “own tools” in order to best support the uncertainty which is linked to this period of life. 8  These authors point out that research in the field of palliative care is quite difficult. Indeed, research is linked to evidence-based medicine. Consequently, the uncertainty implied by palliative care is a challenge. They say that the objective of evidence-based medicine is linked mainly to the will to disseminate recommendations to practitioners. They wonder about the place of uncertainty here for medicine in general. “The subjective integration of the relativity of the scientific approach is partly shunted by this use to external recommendations” (Delpierre et al. 2014, 1174).

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Regarding this paradox, it sounds very relevant to share one quotation which is related by Jankélévitch himself, coming from Eugene Ionesco (2010 [1962], 160): “Everybody is the first to die”. On the one hand, we can consider death as a natural law for living beings. In a simple way, we can say that “life” implies “death” and “death” implies “life”. Consequently, there is no real place for surprise here, and everyone knows the end of the story. People died before “me”, and people will die after “me”. However, are people really considering death from this point of view? Is this view relevant and adapted for professionals and patients in palliative care? By sharing Ionesco’s idea, Jankélévitch highlights that there is always a kind of originality in the death of a person. We cannot compare one death to another, as we cannot put people on exactly the same level. Everyone has their own ipseity. In this, at the end of their life, people are supposed to be supported in a very singular way. The very “first time” implies “unknown” and, consequently, uncertainty. No one really knows how it will be. But we are aware of this “unknown”. The fact of thinking about the specificity of the palliative approach (regarding curative approach), of questioning the relationship to time (Zielinski 2014), of working on a better understanding of the suffering, all of those are ways to accept the dimension of specificity involved in palliative care. The mystery of death corroborates this strongly. This idea of unicity echoes the support implied by professionalism at the end of life. If this attitude includes uncertainty, we must be careful about its integration into the health-care field, including palliative care. Indeed, as a medical specialty, palliative care would sometimes be tempted to “settle it within the framework of medical thought and its scientific paradigm, concerned with efficiency, reproducibility, safety, etc., and therefore with risk control and the reduction of uncertainty.” (Châtel 2016, 105; author’s translation). What the sociologist names ‘the art of dying‘is expressed in the present time, with uncertainties and plural perspectives. Such a vision emphasizes the importance of taking the other person into account in all his ipseity. It must be reactivated in each encounter, in each exchange, no matter how small it may seem. Therefore, it probably means being careful to ‘little‘things. Thus, Tanguy Châtel mentions the attention to futility. “What is more futile than a look, a caress, a silent presence, all those attitudes that remain when activism has ceased?” (Châtel 2016,118; author’s translation).To go further, perhaps we can discuss the term “knowledge” itself. We can know something when we can grasp it in reality. But, how can we grasp the reality of death? Perhaps there is a kind of contradiction between death and human understanding. The mystery of death makes a real theory of death complicated. Something gets away when we try to do such a thing. There is a limit to the rationalization of death by human understanding. Thinking about death means rather accepting the undermining it creates. Consequently, palliative care is made up of the two terms of the paradox expressed by Jankélévitch. On the one hand, the scientific and technical side of palliative care is a way to grasp death as a “phenomenon”. Such a speciality relies on biomedical knowledge, advanced skills and research in order to provide the best possible support at the end of a patient’s life. On the other hand, if we only consider

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this dimension of palliative care, we miss the second part of the paradox, and probably, the singularity of palliative care. The risk is that we reduce its reality and forget the central and fundamental uncertainty. Such an uncertainty cannot be grasped totally through medical practice. More precisely, the confrontation of death leads to a huge uncertainty and one goal of palliative care is to understand and deal with it.

2.4  B  etween Knowledge and Awareness, the Relationship to Death: First, Second and Third Person In order to discuss the dimension of the “knowledge” and “awareness” of death, I would like to share another quotation related by Jankélévitch, from Jacques Madaule: “I know that I am going to die, but I can’t believe it”. This sentence refers to a main distinction used by Jankélévitch. There are two ways to refer to death: by knowledge and by awareness. As I have said previously, knowledge can be linked to scientific theories and technical skills. However, the awareness of death is quite particular: This is a rupture. It breaks a common thread. For Jankélévitch, the learning of death is different from the awareness. The learning can be progressive, whereas awareness really comes as a shock. Jankélévitch gave three relevant characteristics about this dimension of “awareness”. Once more, it allows one to reflect upon the uncertainty in palliative care, precisely because the fact of becoming aware of death is linked to uncertainty. The first description is “effectivité”. We set aside theoretical knowledge to realise with all our body, spirit and soul that death is almost here. The following syllogism is not helpful here: “Every human is mortal; I am a human, so I am mortal”. The medical part of palliative care cannot offer answers to everything. The logical part of knowledge cannot cover everything and there is a real need to accept limits. This dimension of “effectivité” implies that the “whole” person needs to be considered. It is not just about the rational knowledge of death; it is about the awareness. In this regard, it is exactly what definitions of palliative care are underlining. In 1999, the French Society of Palliative Care (SFAP) referred to the definition of palliative care as “active care in a holistic approach to the person with a serious, progressive or terminal illness. Their goal is to relieve physical pain and other symptoms and to take into account psychological, social and spiritual suffering” (author’s translation).9 The relationship between health-care professionals and patients focuses on placing the patient at the centre and to consider them as a “person alive until death”. The type of palliative care will differ from one patient to another, depending on the specificity of the situation, the needs of the patient and the way they face the coming death. In 2002, the National Program for the Development of Palliative Care focused

 http://www.sfap.org/system/files/def-loi-1999.pdf

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on “comfort” and “quality of life”.10 The World Health Organization11 insists on the necessary intertwining between curative and palliative care, because there is no need for a radical break between these two approaches to care. The National Centre for End-of-Life and Palliative Care explained that “the goal of palliative care is to help maintain quality of life as much as possible for patients with a disability or serious, life-threatening illness through the prevention and relief of suffering, whether physical, psychological, existential or spiritual”.12 This period requires appropriate support and care. Together the latter are called “palliative care”. The extremity of life, thus, requires a particular way of caring, adjusted to the symptoms that appear at the end of life. Each definition points towards the fact that palliative care defends a global approach of the patient which is not limited to the body. It considers other aspects of their person and existence, potentially involved in the progression of the disease. The near-death horizon is, therefore, clearly integrated. The goal is to support the patient, ensuring that pain and suffering are limited as much as possible, thanks to the specialised knowledge and techniques. Consequently, the way palliative care considers the whole person, in all their dimensions, is linked to the fact that we recognise that the awareness of the “effectivité” of death can imply the person’s body, spirit and soul. If the knowledge of death is linked to the rational integration of the biological law, the awareness involves another dimension and palliative care deals with it. The second characteristic of this awareness is “imminence”. The person realises, sometimes with anxiety, that their last “future” is happening. Even if we can prepare ourselves for death, this preparation does not always fit reality. The constant reduction of time between the person and death can be really disarming. Consequently, the challenge is to support patients in this strenuous experience of “time” which is passing and finishing. The relationship to temporality is considerably singular in palliative care units. Indeed, the goal is probably to take into consideration this new relationship to death, characterized by “imminence”. Slowness characterizes the pace of work in palliative care units. The particularity of time and pace of activity is strongly felt by caregivers, who see it as a hallmark of palliative care work. The palliative care unit seems to be completely out of synchronization with the temporality of the hospital organisation and its logic of profitability, efficiency and productivity, sometimes close to Taylorian or Fordist patterns. (Castra 2003, 138; author’s translation)

Among the requirements imposed on health-care professionals, we have the anticipation. “If anticipating, and sometimes the wish to ‘anticipate everything‘ is an integral part of medical practices, it is because they inscribe curative action in a prediction of the effects of the treatment. The component of mastery and control necessary to curative care thus participates in an anticipation that would combine

 http://www.sfap.org/system/files/def-loi-1999.pdf  http://www.sfap.org/system/files/def-oms.pdf 12  https://www.parlons-fin-de-vie.fr/la-fin-de-vie-en-pratique/les-soins-palliatifs/ 10 11

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two aspects: a technical motive regarding the symptomatological evolution dictating in part possible changes in treatment but also, on a more psychological level, an anticipation of loss.” (Bittolo 2013, 27; author’s translation) However, how can we predict death? How can we assert this imminence? This thought of time at the end of life also expresses the discontinuity of the end of life. This can be a source of suffering for health-care professionals. “I have sometimes met elderly people in nursing homeswho, according to the teams, have only “a few days“ left to live, and this for several years!” (Bittolo 2013, 30; author’s translation). How face relapses and remissions, difficult moments and moments of relief? This uncertainty is experienced by the patient but also by the team and should therefore be discussed in a collegial manner.The last element is that the awareness of death means that it becomes “a personal concern”. It is “my death”, not that of my neighbour, my colleague or my father. Regarding this, Jankélévitch made a very appropriate distinction between three different ways to “live” death and dying: the first person, the second person and the third person. The “third person” means the general death: “one died”, “he died”, “we die”. It is about someone we do not really know or just the natural and very common law of mortality. We can, for example, experiment this type of death when we are reading the newspaper or checking social networks. We clearly know that people are dying all around the world for different reasons, such as flu, accident or old age. Are we affected or astonished about that? The second person means another dimension. I know the person because they are part of my life. They are a member of my family or a friend. Even if we know that our relatives are going to die 1 day, it is always “the inconsolable which is crying for the irreplaceable”. There is something we cannot master, a large part of the unknown and uncertainty when “our people” are dying. Finally, this “first person” means for Jankélévitch that people are always dying alone and sometimes with anxiety. In 2002, the French National Agency for Health Accreditation and Evaluation explains that “Palliative care is for people with progressive, life-threatening, advanced or terminal illnesses and their families or loved ones. Volunteers, trained to provide support and belonging to associations that select them, can supplement the work of the care teams, with the consent of the patient or their family”.13 Indeed, the aim of palliative care is also to include family and friends, insofar as they are an essential part of the team and a fundamental presence for the patient. The uncertainty has to be considered in end-of-life situations, at the crossroads of everyone’s experience: patient, family and professionals. Moreover, according to each situation, there is also the experience of the volunteer. We can question the position of each one and the benefits they bring to the patient in the latter’s experience of the end of life. How can one succeed in crossing the first, the second and the third person, in order to soften the end-of-life journey of the patient? How can one connect these different experiences, which are fundamentally different? The sociologist Michel Castra (2003, 160) reflected upon the correlation between all these levels of

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 http://www.sfap.org/system/files/autres-def-sp.pdf

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presence near the patient. The volunteer, for example, is representative of the link between the “outside” and the “inside”, between civil society and the health-care system. Thus, the emotional burden is shared and the health-care team can continue to carry out its task. The family, for its part, is a real resource and is strongly requested in the daily support of the patient. They are involved particularly in the familiarization of the general support for the patient, the stay inside the unit and the relationship. In this, the family really helps to have a better control of the relationship with the suffering patient. There is a real interweaving between professional work and what Michel Castra calls “secular work”, i.e. work carried out by non-­ professionals. In fact, this secular work must also be balanced. Indeed, the goal is not that it becomes harmful, especially for the patient, but also for the effective functioning of the health-care team. When a member of the family provides care for their loved one, things can quickly become complex because of the emotional charge linked to the context of the imminent loss of the loved one. The family takes the place of the second person. However, the complexity of a situation sometimes implies that the second person becomes the first person. Consequently, a good balance is a constant challenge. With such a distinction, we can also question the place and experience the professional. In what position does the professional support the patient; in the second person or the third person? We can understand that the first person cannot be uncoupled with uncertainty. But how can we consider the position of a professional: should the latter support the patient as if they were a complete stranger, this third person? Or, should the professional support the patient as if they were their loved one? We need to consider this point with the questioning around certainty and uncertainty. Indeed, the first person implies the uncertainty of the “awareness”, just mentioned above. The patient will very soon face the mystery of death. Consequently, a lot of questions can arise from this confrontation. This level of uncertainty is also relevant for the second and the third person, because the mystery belongs to death in general. However, we can probably imagine that the uncertainty is reduced in the second and third person, because neither relatives nor physicians will need to confront their own death as the patient will do very imminently. Reflecting upon a theory of uncertainty in palliative care, within a reflection upon professionalism at the end of life, is a way to talk about death and its place in medicine. It is also a way to point out that palliative care tries to have a singular approach and to be adjusted to the patient, their history and way of living and their relatives, perhaps more than anywhere else. We cannot deny the mystery of death, and one of the main issues of palliative care, and more generally of medicine, is to make compatible and find a good balance and compatibility between both of these aspects: the medical dimension, whose goal is to develop certainties, and the huge dimension of uncertainty, which probably implies getting out of the scientific approach involved by medicine. The uncertainty involved by Jankélévitch’s theory of death enables us to think about the “occasion” of care. Do we always have the better occasion to take care of patients in the right and adjusted temporality, bringing together the first, second and third person?

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References Ariès, Philippe. 1975. Essais sur l’histoire de la mort en Occident, du moyen âge à nos jours. Paris: Le Seuil. Barruel, Florence, and Antoine Bioy. 2013. Du soin à la personne: Clinique de l’inertitude. Paris: Éditions Dunod, Psychothérapies. Bittolo, Christophe. 2013. Les sirènes d’Ulysse et les soins palliatifs à l’hôpital. In Connexions, 19–31. Castra, Michel. 2003. Bien Mourir. Sociologie des soins palliatifs, Le lien social. Paris: PUF. Châtel, Tanguy. 2016. L’accompagnant, un funambule de la relation. In La mort et le soin, ed. Elodie Lemoine and Jean-Philippe Pierron, 103–121. Paris: PUF. Choteau, Bernadette. 2014. La souffrance globale en fin de vie. In Manuel de soins palliatifs, ed. Dominique Jacquemin and Didier de Broucker, 193–201. Paris: Édition Dunod. Denis-Delpierre, Nathalie, Stéphane Moreau, Solenn Leparoux, and Joséphine Thomazeau. 2014. La recherche clinique en médecine palliative: un vecteur d’espoir? In Manuel de soins palliatifs, ed. Dominique Jacquemin and Didier de Broucker, 1173–1182. Paris: Édition Dunod. Ionesco, Eugène. 2010 [1962]. Le Roi se meurt. Paris: Belin-Gallimard, Classico collège. Jankélévitch, Vladimir. 1957. Le Je-ne-sais-quoi et le presque-rien. Paris: PUF. ———. 2003. Penser la mort. Paris: Éditions Liana Levi, Piccolo. ———. 2017 [1977]. La Mort. Preface by Frédéric Worms. Paris: Éditions Flammarion. Lecourt, Dominique, ed. 2004. Dictionnaire de la pensée médicale. Paris: PUF, Quadrige. Morel, Vincent. 2014. Place d’une association dans le développement des soins paliatifs et le débat politique. In Manuel de soins palliatifs, ed. Dominique Jacquemin and Didier de Broucker, 987–992. Paris: Édition Dunod. Morin, Edgar. 1951. L’Homme et la mort. Paris: Éditions Corréa. Thomas, Louis-Vincent. 1975. L’anthropologie de la mort. Paris: Éditions Payout. Zielinski, Agata. 2014. Temporalité, maladie grave et soins palliatifs. In Manuel de soins palliatifs, ed. Dominique Jacquemin and Didier de Broucker, 92–98. Paris: Édition Dunod. Elodie Camier-Lemoine  earned her PhD in Philosophy (with a focus on medical ethics regarding end-of-life) at Jean Moulin University (Lyon, France). She is currently project manager at the Centre of Ethics, in the region of Auvergne Rhône-­Alpes in France. Her missions include teaching and training health-care students and professionals, conferences, study groups and the organisation of public debate, in the field of medical ethics. She also teaches bioethics at Lyon Catholic University, for students in science, with a focus on the topic of new technologies. She is a member of the Ethics Commitee of the University Hospital of Lyon and the Ethics Commitee on digital health of Auvergne Rhônes-Alpes.

Chapter 3

An Ethical Discussion of (Un-)Certainty at the End of Life: Exemplification by Means of Continuous Deep Sedation and Advance Directives Eva Kuhn, Elodie Camier-Lemoine, Bradley Lonergan, and Christine Dunger

3.1  Introduction Uncertainty is a common experience and basic constant of life. It is a phenomenon and sensation that affects our decision-making, particularly when we cannot predict the consequences of our actions or have incomplete information about the situation (Simpkin and Schwartzstein 2016; Tannert et al. 2007). Uncertainty in medicine is a key aspect in diagnosis, treatment, and in the health-care system as a whole. Research over the past 30 years has focused on professional development (Hatch 2017) and uncertainty around illness (Etkind and Koffman 2016); uncertainty is increasingly linked to physicians’ burnout, residents’ stress and (lack of) resilience (Simpkin et al. 2018). Although ubiquitous, uncertainty in medicine remains “generally suppressed and ignored, consciously and subconsciously” (Simpkin and E. Kuhn (*) Section Global Health, Institute of Hygiene and Public Health, University Hospital Bonn, Bonn, Germany e-mail: [email protected] E. Camier-Lemoine Centre of Ethics, Region Auvergne Rhône-Alpes Laennec, School of Medicine, Claude Bernard University, Lyon, France e-mail: [email protected] B. Lonergan Westminster NHS Trust Lancaster University, Chelsea, UK e-mail: [email protected] C. Dunger Chair of Social Philosophy and Ethics in the Health Care System, Witten/Herdecke University, Witten, Germany Institute for Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria e-mail: [email protected] © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_3

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Schwartzstein 2016, 1713). Healthcare professionals find themselves “between the quest for certainty and the reality of uncertainty” (Simpkin and Schwartzstein 2016, 1713). This tension is inherent in all medical disciplines and affects all health-care professions, patients and their relatives alike (Tannert et  al. 2007). Nevertheless, “the culture of medicine does not seem to admit” embracing uncertainty so far (Kim and Lee 2018, 185). One approach to establish such a culture may be Spiritual (Self-)Care (see also Kuhn in this volume). Scholarship distinguishes roughly between two different types of uncertainty (Djulbegovic et al. 2011). Firstly, uncertainty is the relationship between what is not known and what is known. Secondly, uncertainty is the quantification of unpredictability and risk, based on current data and knowledge. The first type of uncertainty “occurs when applying data to patient care” and, therefore, in clinical reasoning, which is the core of health-care professionals’ autonomy (Kim and Lee 2018, 182). This type of uncertainty is much harder to grasp for professionals in treatment and care than technical and data-related uncertainty. Consequently, there are several definitions and terms that try to qualify the phenomenon of ‘uncertainty’: “intolerance to ambiguity”, “risk averse”, “unstructured”, “vagueness”, “fragmented”, “unclear” (Gosh 2004). Politi, Han, and Col (2007, 682) refer to uncertainty as “the inability to determine the meaning of illness-related events”. Following Mishel (1988), they consider uncertainty in illness to be nourished by complexity, unpredictability, ambiguity and lack of information regarding the disease, its progression and outcome. The more complex, unknown, ambiguous and unpredictable an illness, the more uncertain the overall situation. Consequently, complex medical disciplines, such as genetics, psychiatry, oncology and palliative medicine, bear a lot of uncertainty. The tension between certainty and uncertainty is paramount in end-of-life (EoL) care in particular  – as aptly phrased by the Latin inscription ‘mors certa, hora incerta’: death is certain, its hour is uncertain (see also Camier-Lemoine in this volume). Internationally, medical personnel, public authorities and society as a whole attempt to ‘manage’ EoL. One way to do so is “Planning for Uncertainty” (Doukas and Reichel 2007) by obtaining an Advance Directive (AD) or initiating Advance Care Planning (ACP) early on. Another is the ‘application’ of Continuous Deep Sedation (CDS), where death and roughly the hour of death become certain and, consequently, ‘manageable’. However, both CDS and ADs still come with a bundle of questions that make health-care professionals feel that they are negotiating highly uncertain situations. Many of these questions have an ethical core but might also have an existential, relational, social or legal component. As ethical arguments for and against ADs and CDS have been published for quite some time (Fagerlin and Schneider 2004; Jox et al. 2015; Materstvedt and Bosshard 2009; Twycross 2019), the present article approaches the discussion the other way around by focusing on (un)certainty to reveal new conceptual and practical insights into EoL care and treatment. Therefore, the article, firstly, sets out to answer the question when, where and how uncertainty occurs regarding CDS and ADs. The legal framework, existing guidelines and practical challenges of CDS and ADs are presented separately for three countries: the United Kingdom (UK), France and

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Germany, to give an overview of aspects of (un)certainty. Both ADs and CDS are complex topics and exist in comparable, yet, contrastable forms of practice in all three countries of this study. They act as lenses through which we attempt to gain an insight in the uncertainty of EoL care, rather than being unique in displaying uncertainty themselves. The international comparison, underpinned by cross-references to other European countries, results in a cluster of (un)certainties that might arise regarding CDS and ADs. The aim is to explore different kinds of uncertainty which apply at the EoL, without suggesting a single approach to uncertainty or providing an exhaustive list of types of uncertainty. The findings are discussed against the background of professional medical ethics, along the question: How should health-­ care professionals, especially physicians, deal with (un)certainty at the EoL? In line with the overall edited volume, the main focus is on physicians, including the patients, families and palliative care team’s perspective only where indicated.

3.2  ( Un)Certainty at the End of Life: The Examples of Continuous Deep Sedation and Advance Directives Germany, France and the UK not only share a more or less similar understanding of professional ethics but are also connected in recent EoL care and treatment developments (Stolberg 2017). All three countries, for example, are part of the European Association for Palliative Care (EAPC) and, therefore, share a common ground. However, there are also differences. The national legal regulations and professional guidelines are compared for a thorough understanding of when, where and how uncertainty occurs at EoL – and what aspects can be regarded as certain. Thereby, the authors focus on the most instructive, pertinent and currently valid documents for each country. The national discussions are of an exemplary nature due to the scope of the article to discuss ethically relevant uncertainty in EoL care and its focus on the international comparison.

3.2.1  Continuous Deep Sedation The American Society of Anesthesiologists defines ‘sedation’ as a continuum and distinguishes between minimal, moderate and deep sedation (ASA 2014). The use of sedation at the EoL is divided into intermediate and continuous sedation (De Graeff and Dean 2007). This international comparison focuses on CDS, also called terminal sedation or palliative sedation, as this is the most controversial sedation practice and has a direct relationship to a patient’s death (De Graeff and Dean 2007). All three countries understand CDS in the light of the “Framework for the Use of Sedation in Palliative Care” by the EAPC.  The CDS, maintained until death, is potentially indicated if a patient “with intolerable distress due to physical

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symptoms” and “in the very terminal stages of their illness” is refractory to other treatment options (Cherny, Radbruch, and Board of EAPC 2009, 584). It aims to provide the certainty of death without pain, as dying under pain is an outcome feared by many and pain relief is generally prioritized during palliative care. 3.2.1.1  United Kingdom When discussing CDS in the UK, it is important to be clear on the indication for providing treatment and to differentiate between the intended and unintended consequences. The continuum of sedation ranges from side effects of legal EoL analgesia (e.g. morphine) to illegal assisted suicide. In rare situations where a patient’s symptoms are severe, intractable and causing distress despite reasonable attempts at treatment, CDS can be acceptable. Unintended deaths caused by medication can be permissible under ‘the doctrine of double effect’. This states that “sometimes it is permissible to cause a harm as a side effect [or “double effect”] of bringing about a good result even though it would not be permissible to cause such a harm as a means to bringing about the same good end” (McIntyre 2019). If a dying patient requires further medication to relieve their pain or agitation, it is acceptable to administer it as part of treatment at the EoL, even if it results in the patient’s death. This has been accepted in medical practice for some time but was restated and clarified in the case of Annie Lindsell in 1999, a lady with motor neurone disease (BMA 2012). Ms. Lindsell wanted assurances that her general practitioner would not be prosecuted for providing treatment to relieve her distress if she were choking or having difficulty swallowing, even if it would end her life. She withdrew her application to the High Court after palliative care specialists stated that this follows ‘the doctrine of double effect’ and that treatment can be provided for symptoms causing mental distress at the EoL, as well as for pain. By comparison, Kelly Taylor was refused her request for deep sedation in 2007 (BMA 2012). Ms. Taylor had an AD to refuse nutrition and hydration if she became unconscious, so her hospice felt that providing deep sedation would constitute euthanasia. The courts have been clear, as in Burke vs Law, Burke vs GMC, that “doctors could not be forced to administer treatments which they believed to be clinically unnecessary, futile or inappropriate”, though this does not apply to requests for artificial nutrition and hydration (R – On the application of Burke v The General Medical Council [2005] EWCA Civ 1003). The differences between these cases are what was deemed appropriate by the physicians, the intention of the treatments and the treatment itself. Whilst there is no mention of CDS in the National Institute for Health and Care Excellence guidelines (NICE 2011), it is mentioned by other groups. The Association for Palliative Medicine states that CDS can be used to reduce a patient’s awareness of intractable symptoms and that “sedation in palliative care is thus sedation while the patient dies and is not sedating the patient to death” (APM 2009). This distinguishes CDS, which is only acceptable in rare and intractable circumstances, from

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slow euthanasia, which is not acceptable at all. The intended purposes are different; though it is conceivable that the intentions of individual physicians could be unclear. The blurred boundaries between CDS and (slow) euthanasia become particularly pertinent in countries such as Belgium and the Netherlands where both procedures are legally permissible. For example, if a case is reported as euthanasia highly depends on the type of medicines that are used, with cases where opioids had been used often being not reported and hence labelled as CDS (van der Heide et al. 2007). In Belgium, differences of defining – and administering – CDS or euthanasia have been reported for Dutch- or French-speaking as well as Flemish physicians (Dierickx et al. 2018). The British Medical Association (BMA) also acknowledges the EAPC advice on the use of CDS. The EAPC specifies that mild sedation should be used in the first instance and deep sedation used for intense, refractory symptoms if the patient requests it. Hence, local hospital guidelines in the UK often only make indirect reference to the use of CDS, given that it should be used infrequently in extreme situations (NECN 2012). Nevertheless, one study found that 18% of patients in the UK had CDS at the end of their lives (Seale 2010). This seems a high figure compared to the cautious language used in guidelines. The reason for this mismatch is unclear, but the EAPC recognises that it may be used inappropriately by physicians struggling to manage complex symptoms. 3.2.1.2  France In 2016, France was the first country worldwide to legislate on CDS (Horn 2018). In the Claeys-Leonetti law,1 sedation is the pursuit of a loss of consciousness using medicines, in order to eliminate the perception of a situation experienced as unbearable by the patient. This is reserved for situations where all other means have been proposed and/or implemented without obtaining the relief expected. Sedation can be profound, continuous and maintained until death. The law explains that CDS can be performed in the patient’s home or in an institution “at the patient’s request”. CDS at the patient’s request should be distinguished from the situation when the patient can no longer express their will. The physician may stop life-sustaining treatment in the latter scenario and apply CDS to contain heavy bodily reactions. Collegial procedure is one of the preconditions for the initiation of CDS (Decree No. 2016-1066 of 3 August 2016). The collegial procedure is a consultation with the health-care team and an external consultant, who must not be involved in the patient’s care and must be a doctor. No hierarchical link between the consultant and the doctor in charge of the patient must exist. The opinion of a second consultant should be sought if one of the physicians considers it useful (Article R.4127-37-2 of 1  Law 2016–87 of 2 February creating new rights for patients and persons at the end of their lives; Decree No. 2016-1066 of 3 August 2016 amending the medical code of ethics and relating to collegial procedures and the use of deep and continuous sedation until death provided for by Law No. 2016-87 of 2 February 2016.

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the French Public Health Code) (Quenot et al. 2017). This requirement is in line with the EAPC Framework: If there is uncertainty in the patient evaluation, especially with regards to whether all options to relieve distress have been considered, consultation with experts (e.g. psychiatrists, anaesthetists, pain specialists, oncologists and specialist nurses) should be sought. (Cherny, Radbruch, and Board of EAPC 2009, 585)

As in the UK, the ‘doctrine of double-effect’ is mentioned in the French law of 20052 and recalled again in the law of 2016.3 The latter permits administering CDS until death. In these cases, the Haute Autorité de Santé (HAS; High Authority of Healthcare) document (HAS 2018) with the title “How to implement a deep and continuous sedation maintained until death?” guides health-care professionals by describing how CDS has been implemented in previous legal cases. Physicians must consider this guide when making decisions in addition to documents written by The French Society for Palliative Care (Société Française d’Accompagnement et de Soins Palliatifs).4 The HAS guide suggests various benchmarks to define what CDS is, to distinguish CDS from euthanasia and describes how to initiate CDS. It also gives key facts about the collegial procedure, describes CDS within different contexts of care (e.g. hospital, nursing home, home) and provides resources to support relatives and professionals. 3.2.1.3  Germany Going further than the BMA, the German medical societies, such as the German Society for Palliative Medicine (Deutsche Gesellschaft für Palliativmedizin), acknowledge the EAPC framework on sedation in palliative care as guiding. Although designed as a framework with space for national specification, it is still often used directly as no S3 Guideline5 focusing specifically on sedation has been presented so far. This is different for Germany’s neighbour Austria where a Guideline for Palliative Sedation Therapy has been developed in a Delphi-process in 2016 (Weixler et al. 2017). Various up-to-date guidelines and standard operating procedures refer selectively to CDS in palliative care – all adhering to the EAPC. The most important among these is the “Extended S3 Guideline Palliative Medicine for patients with an incurable cancerous disease” from August 2019, which forms part  Law No. 2005-370 of 22 April 2005 on the rights of patients at the EoL.  Law No. 2016-87 of 2 February 2016 creating new rights for patients and persons at the end of their lives: Art. L. 1110-5-3-3. 4  Examples are: “Evaluation of the refractory suffering”, “Evaluation of the vital prognosis undertaken in the short term” and “Medication implementation for sedation”. http://www.sfap.org/ rubrique/les-recommandations-sur-la-sedation. Accessed 27 September 2019. 5  An S3 guideline represents the highest quality level of the methodology of development a medical guideline can have in Germany. Such a guideline has been developed systematically, containing different analyses and an assessment of the clinical relevance of thematically relevant scientific studies (AWMF 2004). 2 3

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of the Guideline Programme Oncology (Leitlinienprogramm Onkologie 2019). As the most recent and most comprehensive document, it is of special interest for this international comparison. Firstly, the S3 Guideline clarifies that intermediate sedation should not be used as a treatment for insomnia (Leitlinienprogramm Onkologie 2019, 243). Referring to specific incurable tumours, it highlights the case of severe bleeding; if imminent, physicians should consider CDS and discuss this possibility with patients (Leitlinienprogramm Onkologie 2019, 348). The guideline justifies this by correlating the knowledge of possible symptom-relieving interventions with the reduction of fear and increase in certainty. Being aware of such options may provide peace of mind, evoke feelings of safety and give control back to the patient. Furthermore, the guideline explicitly mentions the terrifying impression that severe bleeding may have on relatives and emphasises the importance of preparing them for the shocking sight (Leitlinienprogramm Onkologie 2019). Moreover, the S3 Guideline clarifies in its consensus-based recommendation No. 18.16 that physicians can offer a patient CDS for symptom control if the patient suffers from an incurable cancer and insufficiently controllable symptoms (Leitlinienprogramm Onkologie 2019, 433). Recommendation No. 19.37 highlights that CDS should be carried out by physicians and professional caregivers with experience in palliative medicine (Leitlinienprogramm Onkologie 2019, 460). One indication mentioned for CDS is existential suffering (Leitlinienprogramm Onkologie 2019, 462). As the latter is hard to grasp, one standard operating procedure presented within the Comprehensive Cancer Center Network requires discussion of the case within the multi-professional team and carrying out an ethical case conference (Oechsle et al. 2017). A glance at the EAPC also shows that the association has not reached a consensus as to whether sedation can be used to treat psychological symptoms but that all other options should certainly be considered prior to using CDS. Another open question, revealed by a study with British, Belgian, and Dutch physicians administering CDS in cases of psychological and existential suffering was who can treat this suffering best (Anquinet et  al. 2014). Refining refractory psychological or existential suffering is one of many desiderata for the European Palliative Sedation Project that covers the eight European countries Belgium, England, Italy, Hungary, Germany, Romania, Spain and the Netherlands (Payne and Hasselaar 2020). On the legal level, three developments that all touch on CDS should be pointed out. Firstly, in 2010, the German Federal Court of Justice (BGH) redefined indirect and passive euthanasia (BGH 2 StR 454/09) and clarified that treatment can be discontinued either by an action or omission, withholding or withdrawing. This clarification is applicable for both euthanasia and symptom control. Secondly, in 2015, the German Parliament passed a law about the business-like promotion of suicide.6 It states that anyone who intends to promote the suicide of another person by

6  For background information to the political debate, see https://www.bundestag.de/dokumente/ textarchiv/2015/kw45_de_sterbebegleitung-392450 in German. Accessed 27 September 2019.

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commercially giving them the opportunity will be punished with imprisonment of up to 3 years or a fine. Family members and affiliates are exempt from punishment. In addition to the general discussion about consequences for physicians, some argued that CDS performed as ‘slow euthanasia’ could also be misused to promote this kind of suicide (Klinkhammer 2014). In February 2020, however, the German Federal Constitutional Court declared this law to be unconstitutional and consequently void.7 Nevertheless, the legislator’s intended focus on autonomy is particularly relevant in light of the third development. The German Federal Court of Justice acquitted two physicians who prescribed three consenting patients with a lethal drug and cared for them after they themselves took the medication. After fulfilling the patients’ will, the physicians had not tried to save their lives (Urt. v. 03.07.2019, Az. 5 StR 132/18 and 5 StR 393/18). Especially with a view to this last judgement, the German legal situation lacks consistency when it comes to the very EoL and the dying phase. Although guidelines about CDS are clear, the blurred boundary between CDS and slow euthanasia is the subject of an ongoing socio-ethical-legal debate in Germany.

3.2.2  Advance Directives In line with Hines (2001, 500), “communication plays a central role in persons’ efforts to cope with illness-related uncertainties”. One way to communicate one’s wishes about treatment and care at the EoL, both maintaining patient autonomy and reducing uncertainty for health-care professionals and proxies, is the use of ADs. They can, for example, be used by patients to express their wishes to limit or stop ongoing treatments, not to be transferred to the intensive care unit and/or undergo surgical procedures. The purpose of such a document is to know the patient’s will in order to respect their autonomy even though they can no longer express their wishes directly (BMA 2007, 1). 3.2.2.1  United Kingdom In the UK, ADs form only one part of a broader discussion in planning for future ill health and incapacity. The more comprehensive approach of ACP includes both legally binding (i.e. ADs to refuse treatment) and non-legally binding documents

7  For this recent development, consult https://www.lto.de/recht/hintergruende/h/bverfg-urteil-sterbehilfe-217-stgb-kommentar-autonomie-gesetzgebung-aerzte-sterbehilfeorganisationen/ in German. Accessed 08 March 2020. The Constitutional Court’s decision does not regulate the promotion of suicide, but it forces legislature to (re-)define the boundaries of legally permitted physician assisted suicide as well as to discuss legality of euthanasia. It is yet unclear how this decision will change law, medical practice and the social stance towards EoL care.

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(i.e. advance statements). This gives patients, and their carers or physicians, a nuanced toolbox with which to exert autonomy in their later life (Sudore and Fried 2010). Although ACP is highly pertinent in the UK and Netherlands, this article primarily tackles ADs to increase comparability between the countries. ADs cannot only be part of ACP, but are also the most common tool in Germany and France to communicate one’s wishes for the EoL. Furthermore, ACP outside the UK, USA and Canada often only addresses specific groups, such as nursing home residents or cancer patients (Rietjens et al. 2017). ADs provide patients with the opportunity to continue exerting autonomy when they no longer have the capacity. As such, all advanced decisions must comply with the Mental Capacity Act 2005;for example, the person must be over 18 years old, they must have capacity at the time of making the order and it must be written, signed and witnessed.8 If it does not comply, it should still be considered as part of a patient’s previously expressed wishes, but it would not be legally binding. Physicians may be hesitant to accept ADs with any ambiguity or if it has not been updated recently, as it could be argued that it is no longer legally binding, and the family must be aware in order to bring it to the physician’s attention. This has led to an overall apathy towards ADs, putting them behind multiple other issues in the crowded field of medical ethics, and an attempted turn to ACP. The Gold Standard Framework provides guidance for professionals and patients on EoL care and accreditation for hospitals and general practitioner practices on the care that they provide. The Gold Standard Framework (2019) provides a template for decision-making and a bold statement aiming for universal coverage in the UK: “Every appropriate person should be offered ACP discussions (mainly Advance Statements) by their usual/chosen healthcare provider which then becomes an action plan against which quality of care is measured”. The BMA also provides guidance on ADs and there are charities that provide various forms to support these decisions (e.g. Compassion In Dying, Age UK).9 Despite this seemingly transparent guidance and mutual backing from professional and patient groups, ADs remain infrequently encountered in medical practice for physician- and patient-related reasons. There are multiple barriers to high quality ADs – and ACP – in the UK. Death remains a taboo subject in the UK, avoided by patients and physicians alike. Limiting treatment feels uncomfortable and anathema to physicians who view their purpose as ‘saving lives’. The responsibility for ACP lies with all physicians

8  Mental Capacity Act 2005: http://www.legislation.gov.uk/ukpga/2005/9/contents. Accessed 28 September 2019. 9  Compassion In Dying. Advanced Decisions (Living Wills). 2018: https://compassionindying.org. uk/making-decisions-and-planning-your-care/planning-ahead/advance-decision-living-will/. Accessed 28 September 2019; Age UK. Advance decisions, advance statements and living wills. 2019: https://www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs72_advance_decisions_advance_statements_and_living_wills_fcs.pdf. Accessed 28 September 2019; BMA.  Advance Decisions. 2018: https://www.bma.org.uk/advice/employment/ethics/consent/ consent-tool-kit/9-advance-decisions. Accessed 28 September 2019.

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but often no individual physician takes ultimate responsibility for what can be difficult conversations. This can leave patients uncertain of how to initiate ACP discussions. Whilst family physicians are well placed to initiate the discussion, various factors compete against this: increasing workloads, too little time for appointments, patients with evermore complicated medical histories and the legacy of Harold Shipman, serial killer family physician.10 Finally, multiple formats exist across the UK for recording these decisions as ADs, making it a difficult system to navigate. Looking forwards, Coordinate My Care (CMC) is a new electronic system for recording ACP decisions and preferences (NHS 2017). Although it is currently only used in London, it has been relatively successful and offers hope that high quality ACP will be available to all UK residents soon. All health-care professionals, including paramedics attending emergency calls, can access it and patients are able to update it easily and independently. One barrier to its use is that it requires lengthy and ongoing discussions to ensure it is as accurate and well informed as possible. Given the rapid expansion of CMC records (2060 were created in December 2020), hastily creating a record with incomplete information could risk inappropriate provision or withholding of treatment.11 This is a particular concern given the intense time and resources pressures especially during the COVID-19 pandemic. 3.2.2.2  France It is stated in French law12 that any adult may write ADs for hypothetical future scenarios in which they temporarily or permanently lack capacity. The attending physician should inform patients of the possibility of obtaining an AD and, if necessary, give advice on how to write one. A person under guardianship may draft ADs with the authorization of a judge or family counsel. The ADs have an unlimited duration but are amendable and revocable. They are legally binding for physicians, except in cases of life-threatening emergencies and when they appear inappropriate to the medical situation. A collegial procedure (see sect. 3.2.1.2) has to be called for if the physician decides not to apply an AD because it appears inappropriate to the medical situation. In the course of the collegial procedure, the physician may obtain from the patient’s guardian or proxies the testimony of the will expressed by the patient on an earlier occasion. The HAS proposes two models for drafting ADs. One originates from a situation where the person does not have any particular disease. The other is adapted to the   For the case, see https://www.bbc.co.uk/news/uk-scotland-30192721. Accessed 29 September 2019. 11  For current statistics, see https://www.coordinatemycare.co.uk/. Accessed 28 February 2021. 12  Law No. 2016-87 of 2 February 2016 creating new rights for patients and persons at the end of their lives  – Public health code: articles L1111-11 to L1111-12  – Public health code: articles R1111-17 to R1111-20 – Decree of 3 August 2016 on the model for ADs. 10

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case in which the person knows they have a serious illness. In any case, this is only a suggestion, and anyone can decide whether to write an AD or not and what to include. The HAS (2016) more generally proposed a public guide for this process. However, while it has been possible to draft ADs since the Leonetti law was passed, only 13% of French people have done so (Le Figaro 2019). As a result, the National Centre of Palliative Care and End-of-Life (Centre National des Soins Palliatifs et de la Fin de Vie) suggests that the concept of ADs should evolve towards that of ACP (CNSPFV 2018). However, to date no concepts to implement any kind of ACP in France and beyond, particularly in Southern and Eastern European countries have been developed (Jimenez et al. 2018). 3.2.2.3  Germany In 2009, § 1901a BGB (Bürgerliches Gesetzbuch [German Civil Code]) came into force as part of the guardianship law (‘Betreuungsrecht’). It clarifies the patient’s right of self-determination and the rights and duties of proxies and physicians. The AD is the main instrument to exert the rights of autonomy and self-determination in situations where one is not competent. During the last decade, the German Medical Association (Bundesärztekammer) has published advice and recommendations on the use of ADs (BÄK 2010, 2018a), particularly referring to people with dementia (BÄK 2018b). These announcements also address health-care proxies and explain the general concepts connected to incompetent patients’ self-determination. A central aspect is the description of the decision-making process. It gives clear instructions on how to arrange the process in different situations and gives physicians the opportunity to determine the patient’s will if there is no proxy, but a valid AD is available (BÄK 2010, A882; 2018a, A2240). This recommendation is not in line with the law and, therefore, non-­binding (Schnell et al. 2020). Guidelines for implementing ADs are mostly developed by clinical ethics committees at different institutions or health-care facilities. Some just give general advice that follows the legal framework,13 whilst others describe the hospital’s internal process, specifying the tasks of the different stakeholders involved.14 Overall, § 1901a BGB did not achieve the intended effect: to give the affected persons, especially the physicians dealing with decision-making concerning incompetent patients, more legal and personal certainty (Dunger et al. 2017).

 E.g. Klinikum Stuttgart. Leitlinie zur Patientenverfügung. September 2009: https://www.klinikum-stuttgart.de/fileadmin/user_upload/leitline_patientenverfuegung.pdf. Accessed 16 September 2019. 14  E.g. Umgang mit Patientenverfügungen. Arbeitshilfe der Ethik-Kommission der cusanus Trägergesellschaft Trier, 2011: https://ethikkomitee.de/downloads/arbeitshilfe-der-ctt-zumumgang-mit-patientenv.pdf. Accessed 16 September 2019; AK Patientenverfügungen am Klinikum der Universität München, 2013. Leitlinie zur Frage der Therapiezieländerung bei schwerstkranken Patienten und zum Umgang mit Patientenverfügungen: https://ethikkomitee.de/plaintext/downloads/muenchner-leitlinie-v3-2013-kurzfassung-cd.pdf. Accessed 16 September 2019. 13

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Finally and comparable to the situation in the UK, both patients and physicians avoid addressing EoL questions that usually come up when drafting ADs. On the one hand, patients hope that their physician initiates the conversation about future treatment decisions. Physicians, on the other hand, fear to dash a patient’s hope and cannot or do not want to cope with the patient and their family’s emotionality that is often a part of EoL deliberations (Jox et al. 2015). Hence, ACP appears to be a dynamic communication-based concept to address most of these uncertainties. It has been introduced and implemented in different ways. One example is the “DialogLeitfaden“ developed by Haller and Schnell et al. (2020) for the hospice context. A more medical driven and broadly applied model is named “beizeiten begleiten®” (Coors et  al. 2015). Since 2015 ACP is enshrined in law (§ 132  g Sozialgesetzbuch [Social Security Code]) and hence open for billing via the Statutory Health Insurance. However, the lack of personal and financial resources as well as knowhow imped an effective implementation (ZEKO 2019).

3.3  R  esults of the International Comparison: A Cluster of (Un)Certainties The international comparison of legal frameworks and professionals’ guidelines, summarised in Appendix Tables 1 and 2, is instructive to map when and how what kind of (un)certainties occur in the context of CDS and ADs for France, Germany, the UK and beyond. Although only giving side-references to other European countries, the mapping of uncertainties can also be applied beyond the French, German and British context and beyond situations involving CDS and/or ADs. Again, due to the vast variety of different kinds of uncertainty that are elaborated in the literature, the aim is to provide examples rather than an exhaustive exploration.

3.3.1  C  ontinuous Deep Sedation: Epistemic, Diagnostic and Prognostic (Un)Certainty In all three countries, CDS as part of the EoL treatment is only acceptable in rare and intractable circumstances and forbidden as a way of (slow) euthanasia (Huxtable and Horn 2013). This differentiation, between CDS and slow euthanasia, leads to initial uncertainties. The ‘doctrine of double effect’ raises questions, especially in the UK and France, about the physicians’ intentions, which, in turn, creates physician insecurity and makes CDS a treatment on uncertain moral and ethical grounds. Conflating CDS and slow euthanasia happens even more as all three countries allow CDS only if death is foreseen or, in the words of the APM (2009), as “sedation while

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the patient dies”. Consequently, the imminent death of the patient has to be certain. The CDS in itself also makes death certain as an outcome in the short term: although carrying the noble aim of achieving certainty of pain relief, death is considered to be one side effect of titrated sedation (Leeman 2002). Consequently, once CDS is applied, the course of things is quite certain. By contrast, its indication often remains contested due to a lack of information. Such a lack leads to gaps in the ability to predict and determine events and their consequences. Recognising the unpredictability caused by uncertainty of information leads to the idea – or even the logical consequence – of complexity. It is uncertain what is beyond classification and definition due to a lack of knowledge, especially in complex situations. For example, physicians and nurses themselves are aware of and attribute themselves a lack of competence and knowledge regarding EoL (see also Mues et  al. in this volume). This level of uncertainty accompanying such knowledge gaps can be described as epistemic uncertainty (Djulbegovic et al. 2011). Epistemic uncertainty must be distinguished from linguistic uncertainty (Colyvan 2008; Regan et al. 2002). The latter is linked to the ambiguity in the language that is used to describe the world. It refers to the gap between what ‘is’ and how it is expressed. Before the application of CDS, physicians made valued judgements about whether a patient is approaching the EoL and is suffering from a ‘refractory condition’ or whether they will respond to treatment. These decisions are based on the patient’s baseline function, current condition and recognising signs of dying (e.g. breathing patterns, reduced consciousness). Whilst death is ultimately inevitable and believed to be certain in a short time, it is difficult to predict for physicians whether imminent death is really certain. The signs are often not specific to dying and there are no objective parameters to measure. This is highlighted by events which are beyond medical explanation: when patients make a recovery against all odds. Consequently, a certain degree of prognostic uncertainty remains (Etkind and Koffman 2016). Moreover, the EAPC framework that gives the national associations and institutions of all three countries at least some guidance on the narrow application of CDS does not provide diagnostic certainty regarding the ‘refractory condition’ nor a clear procedure for decision-making in cases of existential suffering (Cherny, Radbruch, and Board of EAPC 2009). Additionally, there is no medical guideline in Germany providing information – and, therefore, no epistemic certainty – on how CDS should be implemented nationally and for patients other than those with an incurable cancerous disease. To sum up, CDS is situated between epistemic certainty and epistemic uncertainty. Similar to most medical treatments and procedures, it also has elements of diagnostic and prognostic uncertainty (Bhise et al. 2018).

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3.3.2  A  dvance Directives: Epistemic, Linguistic, Relational and Existential (Un)Certainty Regarding ADs, uncertainties occur all along the way. The physician-patient relationship, where ADs come into operation, is the main source of uncertainty at the level of peoples’ interactions and relationships in medicine as such, and particularly at the emotionally charged EoL.  The interaction between two individuals follows behavioural norms which can be a source of both security and uncertainty because one is not familiar with the elements (Goffman 1974). This so-called relational uncertainty goes beyond the scientific nature of medicine and embraces “doubts individuals have about participating in a relationship” (Knobloch 2010, 73). This uncertainty can be based on the self-uncertainty that the physician experiences (e.g. about their role), in uncertainties they notice in the patient or regarding the physician-­ patient-­ relationship as such. In other words, the physician-patient-relationship is, in itself, a chain of uncertainty (Eddy and Billings 1988). Overall, relational uncertainty or uncertainty of the other is present in every interaction that takes place in health care. Whilst relational uncertainty is not unique to ADs, it is arguably more pronounced in their creation and even implementation. The responsibility for creating ADs, for example, lies with all physicians but not with an individual physician, nor with the patient, in the UK. The importance of ADs is recognised, but it remains unclear when, where and with whom to create one. Consequently, the lack of a structured and guided process for creating ADs means there is no incentive to begin difficult conversations. Furthermore, as seen particularly in Southern European countries such as Spain, the implementation of ADs also fails because of a still existing paternalistically tinged physician-patient-­ relationship that complicates shared decision-making (Herreros et  al. 2020). Both in the UK, but also countries like Spain relational uncertainty is often too prominent: the general practitioner, for example, may fear to destroy a patient’s hope and lose their trust if they came up with the topic of ADs. By contrast, the medical specialist (e.g. oncologist) might be uncertain if they are the right person to bring the topic up or whether it is rather the task of the general practitioner, who is familiar with the patient’s records and course of disease (Perkins 2007). The same questions arise for Germany. Even beyond that, the reformulated § 1901a BGB did not automatically make physicians feel more certain about the implementation of ADs, as it does not clearly address many questions arising in daily practice. Exemplarily, physicians by law are not the addresses of ADs. The latter are directed to proxies or a guardian of the patient. Consequently, physicians are given a more or less passive position in the decision-making process that is based on an AD. They are dependent on a third party and their good will. In clinical practice, this does not correspond to physicians’ professional selfconception of being the ‘patient advocate’ and is another source of relational and epistemic uncertainty. Regarding these various relational uncertainties, France shows what can be done with its legal framework for a structured process to

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implement ADs. In the absence of an informal, socially accepted frame of this specific communication situation, it adds a legally justified, structured framework. However, a study with Italian health-care professionals, reflecting on the first Italian law on ADs of 201815 reveals that still some uncertainties regarding the implementation of the law, the physicians’ role and the predictability of future treatments remain (Maffoni et al. 2020). Moreover, the international comparison reflects that epistemic and linguistic uncertainty play a major role in the implementation of ADs. Firstly, the time between writing an AD and its application is unpredictable, leading to uncertainty about the patient’s will at the time of application. The period over which an AD can be considered up to date is undefined. This means that although the ADs can always contribute to decision-making in some way, their period of validity is not truly unlimited in practice (Fagerlin and Schneider 2004). Further guidance is needed to ensure that physicians respond appropriately to ADs at different points. Secondly, it is a characteristic of ADs that they are epistemically uncertain. Some patients want to let contingency and uncertainty take the upper hand and, therefore, only provide vague instructions or a few clear signposts. In addition, patients can generally only anticipate a finite number of medical decisions with which their physicians and proxies may be faced in the future (Fagerlin and Schneider 2004). This creates an epistemic gap between what will be and what is believed to be certain. In order to avoid or at least reduce this gap, all three countries recommend a structured drafting of ADs to ensure a higher level of epistemic (and legal) certainty. To achieve this aim, a widespread implementation of ACP is being discussed internationally but is not covered further in the present article (more detailed: Rietjens et al. 2017). Moreover, even if the AD is very detailed, what the patient had meant when they created their AD may be different to the meaning gleaned by the physician or proxies reading it when it is implemented. This results from different cultural backgrounds, a different understanding of the words used or similar. As the physician cannot always check their interpretation with the drafter of the AD, some linguistic uncertainty will remain (Fagerlin and Schneider 2004). Regarding the superordinate legal and socio-cultural components, Ruth Horn (2020) further explores how differences in that regard influence the implementation of ADs in the three countries compared in the present article, namely Germany, France and the UK. Thirdly, the legal and ethical standards an AD has to comply with also produce uncertainties of their own and raise ethically and practically relevant questions. Examples in the UK and Germany are: Was the patient competent the time they drafted the AD? Did they understand the information in the template? For France: What is a good decision for this particular patient, especially when they restricted treatment, but a good prognosis is certain?

  Law No. 219/2017 of 22 December 2017: id/2018/1/16/18G00006/sg. Accessed 28 February 2021.

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Fourthly, ADs deal with the organisation of EoL treatment and care, but a patient only experiences the progression of a disease over time. They cannot know how their own dying process and death will unfold, especially given that euthanasia is not a legal option of choice in the three countries under discussion, in contrast to other European countries such as the Netherlands or Switzerland. Furthermore, everyone has their own relationship to disease progression and their own death. This individual specificity of existential experience leads to an existential uncertainty in the person of the patient that cannot be resolved by knowledge or communication (Jankélévitch 2017; Schnell 2018; see also Camier-Lemoine in this volume). Although it is one of the most important aspects of EoL and palliative care, it cannot be addressed by ADs as they merely cover the organisation of treatment and care. These existential but also epistemic uncertainties expressed by patients in their ADs about what they would want for themselves is diametrically opposed to the physicians’ asset of certainty, represented by a precise, recently confirmed AD.

3.4  Discussion in the Light of Professional Medical Ethics The international comparison of CDS and ADs provided lenses to describe different kinds of uncertainties that health-care professionals, and especially physicians, potentially deal with in EoL care and treatment. The comparison has also shown that the attempt of guidelines and laws to regulate complex, ambiguous and unpredictable situations and reduce uncertainty for health-care professionals when they face ethical dilemmas (Vogd 2018, 56) does not go far enough or even needs to be discussed critically. There are still a variety of uncertainties left that provoke difficulties and challenges for physicians. The uncertainties that have been uncovered are diagnostic and prognostic, epistemic, linguistic, relational and existential uncertainty. Following Pierce (1997), uncertainty and complexity of the clinical situation are core aspects of ethical decision-making. Accordingly, uncertainty is more than the lack of information. It can be caused, for example, by disagreement between agents involved in the decision-making, particularly relating to their responsibilities, costs and benefits resulting from the decision. Uncertainty always has an ethical dimension, whether it results from ethical considerations or that it leads to such. Consequently, this raises the question how health-care professionals, especially physicians in our case, should deal with (un)certainty at the EoL. Some ethical considerations addressing the different kinds of uncertainties are discussed in the following with reference to the Charter on Medical Professionalism (NN 2002).

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3.4.1  D  ealing with (Un)Certainties in the Realm of Continuous Deep Sedation The answer is straightforward regarding the two cases of prognostic and diagnostic uncertainty that came up in the discussion on CDS: Physicians have the responsibility to be committed to professional competence and scientific knowledge, i.e. to apply the latest medical knowledge and skills. Nevertheless, care and treatment lege artis will not remove these uncertainties completely. Paradoxically, prognostic and diagnostic uncertainty are complemented by epistemic certainty of death in the case of CDS. Although physicians normally welcome certainty, it is seen as highly ambiguous in this case. All three countries acknowledged the risk that it could be used as ‘slow euthanasia’ for different reasons, for example, to escape complex, straining situations – a risk that has been reported, for example, for the Netherlands and Belgium (van der Heide et al. 2007). It is especially this aspect that is ethically and morally relevant. The philosopher Jacques Ricot (2010) fundamentally called into question the whole possibility of a double effect in medical procedures. In such situations, according to Ricot, the last judge is the physician’s moral conscience, as the expected effect can sometimes be intended but not always necessarily envisaged. He questions how to measure an intention or how we can know that the physician’s desired consequence is only relief. With this position Ricot joins the discussions about the doctrine of double effect, going back to Thomas Aquinas, and its use in medical ethics as well as palliative care (Woods and Graven 2020). This uncertainty of intention – that can also have a relational aspect, as it might make the patient, their relatives or the rest of the health-care team wonder what the physician’s ‘real’ intention is – can be reduced but not eliminated by trusting relationships (Genuis 2017). In line with the Physician Charter, trust is earned by ensuring appropriate confidentiality and also by being honest with patients (NN 2002). Honestly informing patients and/or their proxies about the side effect of CDS, namely death, helps to reduce epistemic uncertainty. Moreover, true shared decision-­ making also implies sharing more openly the (un)certainties of decision-making, possible outcomes (prognostic (un)certainty) and the physician’s individual uncertainty, for example, when asked to provide CDS. This individual uncertainty might also include professional self-understanding, as CDS, with its proximity to slow euthanasia, questions a physician’s tasks and professional understanding. Physicians mainly see themselves as healers instead of “helpers of a smooth death” (Müller-­ Busch 2016). Honesty also helps to reduce uncertainty within the palliative care team if not only the key medical and organisational aspects of CDS are clarified, but the physician in charge also discloses an ethical assessment or even their own uncertainties (Davison and Hyland 2002). One opportunity to reduce uncertainty or, at least, distribute it across several shoulders when applying CDS is to summon an ethical case conference. Woods and Graven state that this communication-based decision is also a way to influence the discussion about the physicians’ intentions.

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“We suggest that the soundness of an action is judged through externally evaluable criteria rather than the ‘internal’ mental states of the individual actor especially in the context of multidisciplinary team-working. In this way ‘intention’ becomes ‘collective’. It is inter-subjective and context-based rather than individual, subjective and opaque.” (Woods and Graven 2020, 177) This procedure is required by the German standard operating procedure that is part of the Comprehensive Cancer Center Network. In Germany, the department of Palliative Medicine at the University Hospital Erlangen has developed a non-­ binding sample application which standardises both the documentation of the decision-­ making process and the patient’s history with sedation.16 For the Netherlands, good communication and documentation of the process leading to CDS is included as a requirement in the National Guideline for Palliative Sedation (Verkerk et al. 2007). And the Norwegian Medical Association particularly stresses that deviating from their guidelines on relieving sedation at the EoL “must be discussed with the chief physician / possibly with the treatment team and documented in the patient’s medical record” (Den Norske Legeforenings 2014, 1; translation by the authors). These approaches might help to reduce not only epistemic but also diagnostic uncertainty about the presence of a ‘refractory condition’ and reasons for CDS for physicians and other health-care personnel.

3.4.2  D  ealing with (Un)Certainties in the Realm of Advance Directives Regarding ADs, they attempt to provide greater certainty to patients when circumstances become unclear. They are an opportunity for patients to exert autonomy and to feel empowered to the very EoL. Some conditions, for example, are unacceptable to patients (e.g. intubation, pain) and being certain that these conditions will be avoided can provide comfort. Such a document can also reduce uncertainties for the physician in charge and the patient’s proxies. Nevertheless, it cannot eliminate uncertainties completely. These uncertainties have different sources: Firstly, the information provided in the AD may be insufficient or regarded as being insufficient by physicians and proxies (epistemic uncertainty). Secondly, psychosocial and cultural differences between the patient and the person interpreting the AD bear the possibility of misunderstandings (linguistic uncertainty). Thirdly, ADs hardly cover information on the patient’s existential experiences, especially as they could not forefeel their own EoL (existential uncertainty). Although the latter kind of uncertainty occurs in the person of the patient themself, it also influences decision-­ making, as one can never be completely sure whether the patient would have decided similarly when he had been able to do so directly in the situation under question.

 These documents can be retrieved from http://www.palliativmedizin.uk-erlangen.de/forschung/ downloads/dokumentationsvorlagen-palliative-sedierung/. Accessed 27 September 2019.

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It is because of these uncertainties that ADs can only help to approximate a good decision for a particular patient, but most often do not provide the one and only correct answer. Therefore, an ethical controversy remains: Which treatment is consistent with the principle of respect for autonomy (Beauchamp and Childress 2019, 99ff.)? Did the patient want to reject treatment in this particular situation or did they think of a completely different scenario in their AD? Was the patient competent and well informed when drafting their AD? Many of the uncertainty arising from these questions could be addressed by a dynamic communication-based process like ACP allows. Interestingly, in France this concept of early communication about the patient’s will by using ACP has not seen a lot of attention. As ADs are legally binding for physicians in France, they find themselves in a highly responsible position  – weighing beneficence and non-­ maleficence in the light of an uncertain patient’s will. This responsibility should generally have been already taken over earlier by physicians when it comes to drafting ADs, e.g. by widely implementing ACP. It can be seen as one of their professional responsibilities to overcome their self-uncertainty in the physician-patient relationship and raise the topic of EoL. Similar demands arise, for example, when breaking bad news (see also Azzopardi et al. in this volume) and both challenging situations might be tackled together in the training of physicians. During this process, the confidentiality they have with the patient might even help the latter to authentically bring up existential questions and, therefore, lead to a certain reduction of existential uncertainty (Genuis 2017). In doing so, ADs could really help to determine what a good decision for this particular patient is and help to restrict options. Embedding ADs into ACP could further help to establish a long-term communication process not only between physician and patient, but also with proxies and other caregivers involved. Although this comes with other epistemic and relational uncertainties and “elephant[s] in the room” as a Danish study has elaborated for ACP (Kastborn et al. 2020), this would make a decision more certain and give it more weight than a one-time AD.

3.4.3  General Perspectives on Dealing with (Un)Certainty (Un)certainty at the EoL occurs in various ways and is experienced differently by the people affected. Thus, (un)certainty needs to be discussed from different perspectives. Patients may consider uncertainty as either a danger or an opportunity throughout their disease course, because “at the beginning of the illness, patients need certainty (they often perceive uncertainty as a danger), they are in search of information, then as the end of life approaches, uncertainty becomes an opportunity, perhaps one of hope” (Daydé 2012, 166). By contrast, most physicians prefer – or even long for – certainty.

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Nevertheless, the examples of CDS and ADs have shown that, in practice, the complexity of EoL treatment and care goes beyond certainty. Therefore, certainty alone is inadequate to describe many situations. It might often be rather as Simpkin and Schwartzstein (2016, 1714  f.) write that “only uncertainty is a sure thing. Certainty is an illusion.” Although not totally true (see Sect. 3.3.1), the quote grasps an important aspect: uncertainty is ubiquitous and should be embraced by physicians rather than feared. Consequently, and in the light of professional and personal integrity, uncertainty in the physician-patient relationship and within the team should be taken to be a core part of the medical professions and addressed appropriately (Etkind and Koffman 2016, 414). It is inevitable that physicians feel uncertainty “about their own personal or professional values framework and how to handle situations where two core values are in conflict” (Hill et al. 2020). One way for physicians to address this situation is to engage in specific exercises to become aware of their own professional values and the ethical sensitivity of dealing with uncertainty (Hill et al. 2020). Others suggest that the physician’s own existential uncertainty should result in increased (spiritual) self-care (see also Kuhn in this volume). In addition to raising self-awareness and introspection, it is important to interact and communicate within the health-care team, patients and their proxies in such ethical dilemmas that might be caused by uncertainties and, simultaneously, cause uncertainties themselves. Shaping good relations is a central aspect of good clinical practice (von Weizäcker 1926) and a core requirement of professional ethics (Wheatley and Idris Baker 2007) and, therefore, important in dealing with all kinds of uncertainty at EoL. In line with that, physicians should still be trained better in communication. A wide range of skills, techniques and models already exist that (could) help them to undertake professional communication and maintain – or manage – relationships (for Germany: MFT 2015). To sum up, the following recommendations can help physicians deal ethically with (un)certainty at the EoL. However, due to the complexity of the topic, this must not be understood as an exhaustive list: 1. Physicians should be honest to patients (and their proxies) about their situation and about the different (un)certainties that occur throughout the progression of the disease and in treatment. 2. Physicians should also be honest among each other and with the whole health-­ care team. 3. Physicians should pay particular attention to verbal and non-verbal communication, thereby, always keeping in mind that uncertainty is not totally irreducible. 4. Physicians should seek help to reduce uncertainty where it is possible (e.g. by ethical case conferences or collegial procedures). 5. Physicians should reflect on their own position and role obligations at the EoL.  They should be open-minded towards the existential dimension of their profession.

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3.5  Conclusion The international comparison and discussion have revealed the variety and imminent character of uncertainties in EoL care and treatment both in the legal frameworks, guidelines and practice. Analysis has been restricted to diagnostic, prognostic, epistemic, linguistic, relational and existential (un)certainty regarding CDS and ADs. Although most findings underpin the proposition that “[u]ncertainty is ubiquitous in medicine” (Hatch 2017), it has been shown for CDS that certainty might also be problematic at the EoL. Furthermore, it has been demonstrated that ethical considerations (or even dilemmas) and uncertainties are mutually connected. The Physician Charter is a source of different ethical principles that physicians should adhere to when dealing with the uncertainty and certainty of death: the respect for a patient’s autonomy, the commitment to honesty and patient confidentiality, professional competence and other professional responsibilities, such as respect and the critical self-reflection and assessment of one’s role obligations. Some limitations of this article may be given by its exemplary nature. This article solely explores uncertainty in care and treatment at the EoL based on an international comparison of legal regulations and guidelines of ADs and CDS.  Hence, it does not cover cultural, historical, societal or other aspects that may be responsible for the variations between Germany, France and the UK (for some thoughts in this direction, see e.g. Horn 2013, 2014). The contribution also focuses only on the physicians’ perspective and their professional ethical considerations. A thorough analysis of uncertainties in other professions involved and which the patients’ proxies face at the EoL is up to further research. Furthermore, an international comparison with countries that do not apply EAPC standards in treatment and care would be instructive, as it widens the scope of potential ethical questions and gives insights into different approaches to dealing with uncertainty. Finally, defining, identifying and resolving ‘ethical uncertainties’ in the clinical context remains a research desideratum and calls for more interdisciplinary research in the future. In the light of uncertainty, research and especially clinical practice need to evolve further. They both “need to focus on evaluating clinical reasoning and the demonstration of tolerance for uncertainty” (Simpkin and Schwartzstein 2016, 1714).

Appendixes

Continuous Deep Sedation Law (CDS) only acceptable in rare and intractable circumstances; distinguish from slow euthanasia

United Kingdom • 1993: Airedale hospital trustees v bland It would … be a deplorable state of affairs if … a doctor would be compelled either to act contrary to the principles of medical ethics established By his professional body or to risk a prosecution for murder… I do not consider that, in circumstances such as these, a doctor is required to initiate or to continue life-prolonging treatment or care in the best interests of his patient • 2005: Re L (medical treatment: Benefit) There is a strong presumption in favour of preserving life, but not where treatment would be futile, and there is no obligation on the medical profession to give treatment which would be futile. • 2005: Burke v GMC If a patient asks for a treatment that their doctor has not offered, and the doctor concludes that the treatment will not be clinically appropriate to the patient, the doctor is not obliged to provide it, but they should offer to arrange for a second opinion. • The “doctrine of double effect” considers side effects of legal EoL analgesia

France • 2016: Claeys-Leonetti-Loi(art. L. 1110-5-3 du code de la Santé Publique)aeveryone has the right to receive treatment and care to relieve his or her suffering. In all circumstances, this suffering must be prevented, considered, assessed and treated. The physician provides the full range of analgesic and sedative treatments to respond to the patient’s refractory suffering in an advanced or terminal phase, even if they may have the effect of shortening life. He or she must inform the patient, the trust person, the family or, failing that, one of the patient’s relatives. The procedure shall be entered into the medical record. • The “doctrine of double effect” considers side effects of legal EoL analgesia.

Germany • 2010: Judgement by the Federal Court of justice (BGH 2 StR 454/09)extract of the guiding principlesb1. Euthanasia by withholding, limiting or withdrawing a commenced medical treatment (discontinuation of treatment) is justified if it corresponds with the actual or conjectural will of the patient (§ 1901a BGB) and serves to let the disease process, which will lead to death without treatment, run its course.2. The discontinuation of treatment can be performed either by omission or active doing. • 2015: Penal law on business-like promotion of suicide (§ 217 abs 1. StGB)canyone who intends to encourage another person’s suicide, or grants, provides or conveys this person the opportunity, will be punished with imprisonment of up to 3 years or with a monetary fine.2020: § 217 StGB is declared to be void by the Federal Constitutional Court. • 2019: Criminal liability for physician-assisted suicide (Urt. v. 03.07.2019, Az. 5 StR 132/18 und 5 StR 393/18)guiding principle of the judgement from 03.07.2019dgiving the growing importance of individual self-determination, including decisions over one’s life and voluntary suicide, the doctor who knows the circumstances cannot be bound with criminal consequences to act against the suicide’s will. • Some argue CDS could be understood as a business-like and repeated promotion of suicide.

Appendix Table 1  International comparison of legal framework and guidelines around CDS (authors’ own graph; translation of French and German legal regulations and guidelines by the:

• The French National Authority for Health (HAS 2018, p. 5e):In order to help professionals to take care of their patients at the end of life, this guide describes how to implement CDS in situations indicated by law: o At the patient’s request to avoid suffering and to avoid unreasonable obstinacy: It is considered when there is no other solution to relieve the patient’s suffering at the end of life o In a patient who cannot express his or her will, in the case of cessation of life-­ sustaining treatment. • The French Society for Palliative Care (SFAP): Describes how to implement palliative sedation in cases mentioned by the law • Different documents aim to précis the context of the law • Regional guidelines: Palliative care ethics reflection group (GRESP)

• German medical association (BÄK): Refers to the EAPC framework • German Society for Palliative Medicine (DGP): Acknowledges the EAPC framework on sedation in palliative care as guiding • No S3-guideline ‘sedation’ existent, but: • Guideline Programme Oncology (Leitlinienprogramm Onkologie 2019), e.g.No 15.33 (extract): In the case of an impending severe bleeding, the option of a palliative sedation is to be considered and pointed out to patients so that they do not have to consciously experience the trauma of a severe bleeding.f No 18.16: In patients with an incurable cancer and inadequately controllable symptoms with a resulting death wish, a palliative sedation can be offered for symptom control.g

a

“Toute personne a le droit de recevoir des traitements et des soins visant à soulager sa souffrance. Celle-ci doit être, en toutes circonstances, prévenue, prise en compte, évaluée et traitée. Le médecin met en place l’ensemble des traitements analgésiques et sédatifs pour répondre à la souffrance réfractaire du malade en phase avancée ou terminale, même s’ils peuvent avoir comme effet d’abréger la vie. Il doit en informer le malade, la personne de confiance prévue à l’article, la famille ou, à défaut, un des proches du malade. La procédure suivie est inscrite dans le dossier médical.“ b „1. Sterbehilfe durch Unterlassen, Begrenzen oder Beenden einer begonnenen medizinischen Behandlung (Behandlungsabbruch) ist gerechtfertigt, wenn dies dem tatsächlichen oder mutmaßlichen Patientenwillen entspricht (§ 1901a BGB) und dazu dient, einem ohne Behandlung zum Tode führenden Krankheitsprozess seinen Lauf zu lassen. 2. Ein Behandlungsabbruch kann sowohl durch Unterlassen als auch durch aktives Tun vorgenommen werden.“

Guidelines • National Institute for health and care excellence (NICE) guidelines: No mention of CDS • Association for Palliative Medicine (APM) and British Medical Association (BMA): Acknowledge the European Association for Palliative Care (EAPC) framework • Regional guidelines

§ 217 Geschäftsmäßige Förderung der Selbsttötung. „(1) Wer in der Absicht, die Selbsttötung eines anderen zu fördern, diesem hierzu geschäftsmäßig die Gelegenheit gewährt, verschafft oder vermittelt, wird mit Freiheitsstrafe bis zu drei Jahren oder mit Geldstrafe bestraft.“ d „Angesichts der gewachsenen Bedeutung der Selbstbestimmung des Einzelnen auch bei Entscheidungen über sein Leben kann in Fällen des freiverantwortlichen Suizids der Arzt, der die Umstände kennt, nicht mit strafrechtlichen Konsequenzen verpflichtet werden, gegen den Willen des Suizidenten zu handeln.“ e „A fin d’aider les professionnels à prendre en charge leurs patients en fin de vie, ce guide décrit comment mettre en œuvre la SPCMD dans les situations indiquées par la loi: à la demande du patient d’éviter toute souffrance et de ne pas subir d’obstination déraisonnable: elle est envisagée lorsqu’il n’y a pas d’autre solution pour apaiser la souffrance du patient en fin de vie; chez un patient qui ne peut pas exprimer sa volonté, en cas d’arrêt des traitements de maintien en vie.” f „Bei einer drohenden starken Blutung ist die Option einer palliativen Sedierung zu bedenken und Patienten aufzuzeigen, um das Trauma einer starken Blutung nicht bewusst erleben zu müssen.“ g „Bei Patienten mit einer nicht-heilbaren Krebserkrankung und unzureichend beherrschbaren Symptomen mit daraus resultierendem Todeswunsch kann eine palliative Sedierung zur Symptomkontrolle angeboten werden.“

c

46 E. Kuhn et al.

Law Advance directives (ADs) patients continue exerting autonomy when they no longer have capacity

• 2005: Mental capacity act (Extract from MCA part 1, section 24)“Advance decision” means a decision made by a person (“P”), after he has reached 18 and when he has capacity to do so, that if: (a) At a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and (b) At that time he lacks capacity to consent to the carrying out or continuation of the treatment, the specified treatment is not to be carried out or continued. • Validation criteria: It must be written, signed and witnessed. • An AD is not applicable if that treatment is not specified in the AD, any circumstances specified are absent or there are grounds to believe that the individual did not anticipate circumstances which would have affected their decision. • If the AD is not applicable, it should still be considered as part of a patient’s previously expressed will, but it would not be legally binding. • Writing process: No clear process for writing an AD or how the decision making should be managedACP is proposed to provide a framework for writing an AD – Poor uptake of ACP so far.

• 2016: Claeys-LeonettiLoi (extract from art. L. 1111–6 code de la Santé Publique)a An adult may write an ADs for a time when they are unable to express their own wishes. These ADs express the person’s wishes regarding the end of their life regarding the conditions for continuing, limiting, stopping or refusing medical treatment or procedures. • ADs have unlimited duration and are reviewable and revocable. Persons under guardianship may also draft ADs with the authorisation of a judge or family counsel. • ADs are binding for the physician, except in cases of life-threatening emergencies or if not relevant to the medical situation (but should still be considered).The decision-making process is started after a collegial procedure and must appear in the medical file. The trusted person and the patient’s family must be informed. • Writing process: There is no legal recommendation for how to write an AD, but physicians need to inform patients of the existence of ADs and can advise on writing them. Two models for drafting ADs exist. • ACP is rarely discussed, even if experts favour the communication process.

(continued)

• 2009: German civil code (§ 1901a BGB)(1) if a competent adult has given written consent for the case of his inability to consent whether he consents to certain, at the time of the determination not yet imminent, examinations of his medical condition, medical treatments or medical interventions or them prohibits (living will), the guardian checks if these determinations suit the current life and treatment situation. If this is the case, the guardian has to express and enforce the guarded person’s will. A living will can be revoked informally at any time.(2) if there is no living will or the living will does not apply to the current situation, the guardian has to determine the presumed will of the guarded person. The guardian decides on this basis whether the patient consents to a medical measure in accordance with Section 1. The presumed will is ascertained using concrete evidence. Previous oral or written expressions, ethical or religious beliefs of the guarded person have to be taken into account.b • 2017: Law of hospice and palliative care (§ 39b abs. 2 S. 1 SGB V)the health insurance informs its insured about the possible personal provision for the last life phase, particularly regarding the living will, health-care proxy and care directive.c • As daily practice and studies show that ADs are insufficient, some effort was made to introduce ACP, especially in elderly care, into the legal framework

Appendix Table  2  International comparison of the legal framework and guidelines around AD and ACP (authors’ own graph; translation of French and German legal regulations and guidelines by the authors)

• Haute Autorité de Santé (HAS 2016, 1)d This document is intended to help health-care professionals to talk about ADs and accompany individuals who wish to create one. It can also be used for the training of young doctors. • In addition to the general legal statements, the HAS proposed a general public guide for the use of the process to write an AD.

• German medical association (BÄK): Publishes tips and recommendations for physicians to handle ADs, including for people with dementia • Other AD guidelines are made by institutional clinical ethics committees and associations or health-care facilities. • Political and scientific discussion about ACP is ongoing – Competing guidelines and recommendations exist.

a

“Toute personne majeure peut rédiger des directives anticipées pour le cas où elle serait un jour hors d’état d’exprimer sa volonté. Ces directives anticipées expriment la volonté de la personne relative à sa fin de vie en ce qui concerne les conditions de la poursuite, de la limitation, de l’arrêt ou du refus de traitement ou d’acte médicaux.” b „(1) Hat ein einwilligungsfähiger Volljähriger für den Fall seiner Einwilligungsunfähigkeit schriftlich festgelegt, ob er in bestimmte, zum Zeitpunkt der Festlegung noch nicht unmittelbar bevorstehende Untersuchungen seines Gesundheitszustands, Heilbehandlungen oder ärztliche Eingriffe einwilligt oder sie untersagt (Patientenverfügung), prüft der Betreuer, ob diese Festlegungen auf die aktuelle Lebens- und Behandlungssituation zutreffen. Ist dies der Fall, hat der Betreuer dem Willen des Betreuten Ausdruck und Geltung zu verschaffen. Eine Patientenverfügung kann jederzeit formlos widerrufen werden. (2) Liegt keine Patientenverfügung vor oder treffen die Festlegungen einer Patientenverfügung nicht auf die aktuelle Lebens- und Behandlungssituation zu, hat der Betreuer die Behandlungswünsche oder den mutmaßlichen Willen des Betreuten festzustellen und auf dieser Grundlage zu entscheiden, ob er in eine ärztliche Maßnahme nach Absatz 1 einwilligt oder sie untersagt. Der mutmaßliche Wille ist aufgrund konkreter Anhaltspunkte zu ermitteln. Zu berücksichtigen sind insbesondere frühere mündliche oder schriftliche Äußerungen, ethische oder religiöse Überzeugungen und sonstige persönliche Wertvorstellungen des Betreuten.“ c „Die Krankenkasse informiert ihre Versicherten in allgemeiner Form über die Möglichkeiten persönlicher Vorsorge für die letzte Lebensphase, insbesondere zu Patientenverfügung, Vorsorgevollmacht und Betreuungsverfügung.“ d “Ce document est destiné aux professionnels de santé et du secteur médico-social et social pour les aider à parler des directives anticipées, et à accompagner les personnes qui le souhaitent. Il pourra également être utilisé pour la formation des jeunes médecins dans leur pratique quotidienne. https://www.has-­sante.fr/upload/docs/application/ pdf/2016-­03/da_professionnels_v11_actualisation.pdf. Accessed 6 January 2020.”

Guidelines • British Medical Association (BMA): Provides guidance on ADs • Charities provide various forms to support with AD an ACP (e.g. compassion in dying, age UK) • Coordinate my care (CMC): Patients record care preferences – Can be seen by all medical/social services • Gold standard framework (GSF): Provides a summary of and template for ACP decisions, i.e. guide process

Appendix Table 2 (continued)

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References Anquinet, Livia, Judith Rietjens, Agnes van der Heide, Sophia Bruinsma, Rien Janssens, Luc Deliens, Julia Addington-Hall, W.  Henry Smithson, and Jane Seymour. 2014. Physicians’ experiences and perspectives regarding the use of continuous sedation until death for cancer patients in the context of psychological and existential suffering at the end of life. Psycho-­ Oncology 23: 539–546. APM: The Association for Palliative Medicine. 2009. APM position on using sedating medication at the end of life. https://apmonline.org/wp-­content/uploads/2015/05/APM-­position-­on-­using-­ sedating-­medication-­at-­the-­end-­of-­life.pdf. Accessed 27 September 2019. ASA: American Society of Anesthesiologists. 2014. Continuum of depth of sedation. Definition of general anesthesia and levels of sedation/analgesia. https://www.asahq.org/-­/media/sites/ asahq/files/public/resources/standards-­guidelines/continuum-­of-­depth-­of-­sedation-­definition-­ of-­general-­anesthesia-­and-­levels-­of-­sedation-­analgesia.pdf?la=en&hash=227C0F37B707290 FDEB457AFC9FBDD914E1B3C2A. Accessed 27 September 2019. AWMF: Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften. 2004. Erarbeitung von Leitlinien für Diagnostik und Therapie. Methodische Empfehlungen. https:// www.awmf.org/fileadmin/user_upload/Leitlinien/Werkzeuge/Publikationen/methoden.pdf. Accessed 20 December 2019. BÄK: Bundesärztekammer. 2010. Bekanntmachungen – Empfehlungen der Bundesärztekammer und der Zentralen Ethikkommission bei der Bundesärztekammer zum Umgang mit Vorsorgevollmacht und Patientenverfügung in der ärztlichen Praxis. Deutsches Ärzteblatt 107: A877–A882. ———. 2018a. Bekanntmachungen  – Hinweise und Empfehlungen zum Umgang mit Vorsorgevollmachten und Patientenverfügungen im ärztlichen Alltag. Deutsches Ärzteblatt 115: A2434–A2441. ———. 2018b. Bekanntmachungen – Hinweise und Empfehlungen der Bundesärztekammer zu Patientenverfügungen und anderen vorsorglichen Willensbekundungen bei Patienten mit einer Demenzerkrankung. Deutsches Ärzteblatt 115 (A): 952–956. Beauchamp, Tom L., and James F.  Childress. 2019. Principles of biomedical ethics. 8th ed. New York: Oxford University Press. Bhise, Viraj, Suja S. Rajan, Dean F. Sittig, Robert O. Morgan, Pooja Chaudhary, and Hardeep Singh. 2018. Defining and measuring diagnostic uncertainty in medicine: A systematic review. Journal of General Internal Medicine 33: 103–115. https://doi.org/10.1007/s11606-­017-­4164-­1. BMA: British Medical Association. 2007. Advance decisions and proxy decision-making in medical treatment and research. https://icmwk.com/wp-­content/uploads/2016/01/Advance-­ statements-­BMA-­2007.pdf. Accessed 20 February 2020. ———. 2012. Medical ethics today: The BMA’s handbook of ethics and law. 3rd ed. London: Wiley Blackwell. Cherny, Nathan I., Lukas Radbruch, and Board of EAPC. 2009. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliative medicine 23: 581–593. https://doi.org/10.1177/0269216309107024. CNSPFV: Centre National des Soins Palliatifs et de la Fin de Vie. 2018. Un an de politique active en faveur des directives anticipées. https://www.parlons-­fin-­de-­vie.fr/wp-­content/ uploads/2018/10/Travaux_the%CC%81matiques_directives_anticipe%CC%81es.pdf. Accessed 28 September 2019. Colyvan, Mark. 2008. Is probability the only coherent approach to uncertainty? Risk Analysis 28: 645–652. https://doi.org/10.1111/j.1539-­6924.2008.01058.x. Coors, Michael, Ralf J. Jox, and Jürgen in der Schmitten, eds. 2015. Advance care planning. Von der Patientenverfügung zur gesundheitlichen Vorausplanung. Stuttgart: Kohlhammer. Davison, Graydon, and Paul Hyland. 2002. Palliative care teams and organisational capability. Team Performance Management 8: 60–67. https://doi.org/10.1108/13527590210433357.

50

E. Kuhn et al.

Daydé, Marie-Claude. 2012. Complexité, incertitude et interdisciplinarité: l’apport du travail en réseau. Médecine Palliative 11: 164–169. https://doi.org/10.1016/j.medpal.2012.03.003. De Graeff, Alexander, and Mervyn Dean. 2007. Palliative sedation therapy in the last weeks of life: A literature review and recommendations for standards. Journal of Palliative Medicine 10: 67–85. https://doi.org/10.1089/jpm.2006.0139. Den Norske Legeforenings. 2014. Retningslinjer for lindrende sedering i livets sluttfase. https:// www.legeforeningen.no/contentassets/cc8a35f6afd043c195ede88a15ae2960/retningslinjer-­ for-­lindrende-­sedering-­i-­livets-­sluttfase-­2014.pdf Accessed 28 February 2021. Dierickx, Sigrid, Joachim Cohen, Robert Vander Stichele, Luc Deliens, and Kenneth Chambaere. 2018. Drugs used for euthanasia: A repeated population-based mortality flow-back study in flanders, Belgium, 1998–2013. Journal of Pain and Symptom Management 56: 551–559. Djulbegovic, Benjamin, Iztok Hozo, and Sander Greenland. 2011. Uncertainty in clinical medicine. In Handbook of the philosophy of science: Philosophy of medicine, ed. Dov M. Gabbay and John Woods, 299–356. San Diego: Elsevier. Doukas, David J., and William Reichel. 2007. Planning for uncertainty. Living wills and other advance directives for you and your family. 2nd ed. Baltimore: The Johns Hopkins University Press. Dunger, Christine, Herbert Mayer, Ashar Elabbas, Christian Schulz, and Martin W. Schnell. 2017. Werthaltungen von Palliativ- und Intensivmedizinern bei Therapieentscheidungen mit nicht-­ einwilligungsfähigen Patienten. In Ärztliche Werthaltungen gegenüber nichteinwilligungsfähigen Patienten. Ein Faktorieller Survey. Palliative Care und Forschung, ed. Martin W. Schnell, Christian Schulz, Christiane Atzmüller, and Christine Dunger, vol. 5, 53–143. Wiesbaden: Springer VS Research. Eddy, David M., and John Billings. 1988. The quality of medical evidence: Implications for quality of care. Health Affairs 7: 19–32. https://doi.org/10.1377/hlthaff.7.1.19. Etkind, Simon N., and Jonathan Koffman. 2016. Approaches to managing uncertainty in people with life-limiting conditions: role of communication and palliative care. Postgraduate Medical Journal 92: 412–417. https://doi.org/10.1136/postgradmedj-­2015-­133371. Fagerlin, Angela, and Carl E. Schneider. 2004. Enough. The failure of the living will. Hastings Center Report 34: 30–42. Genuis, Quentin I.T. 2017. Trust, intent, authenticity, and good dying: Beyond the autonomy debates and towards a philosophy of palliative care. Progress in Palliative Care 25: 286–290. https://doi.org/10.1080/09699260.2017.1405868. Goffman, Erving. 1974. Frame analysis: An essay on the organization of experience. Cambridge, MA: Harvard University Press. Gosh, Amit K. 2004. Understanding medical uncertainty: A primer for physicians. Journal of the Association of Physicians of India 52: 739–742. GSF: Gold Standards Framework. 2019. Advanced care planning. The Gold Standards Framework. https://www.goldstandardsframework.org.uk/advance-­care-­planning. Accessed 28 September 2019. HAS: Haute Autorité de Santé. 2016. Les directives anticipées concernant les situations de fin de vie. Guide pour le grand public. October. https://www.has-­sante.fr/upload/docs/application/pdf/2016-­03/directives_anticipees_concernant_les_situations_de_fin_de_vie_v16.pdf. Accessed 28 September 2019. ———. 2018. Comment metre en œuvre une sedation profonde et continue maintenue jusqu’au décès? https://www.has-­sante.fr/upload/docs/application/pdf/2018-­03/app_164_guide_pds_ sedation_web.pdf. Accessed 27 September 2019. Hatch, Steven. 2017. Uncertainty in medicine. British Medical Journal 357: j2180. https://doi. org/10.1136/bmj.j2180. Herreros, Benjamín, María Benito, Pablo Gella, Emanuele Valenti, Beatriz Sánchez, and Tayra Velasco. 2020. Why have advance directives failed in Spain? BMC Medical Ethics 21: 113. https://doi.org/10.1186/s12910-­020-­00557-­4.

3  An Ethical Discussion of (Un-)Certainty at the End of Life: Exemplification…

51

Hill, Douglas L., Jennifer K. Walter, Julia E. Szymczak, Concetta DiDomenico, Shefali Parikh, and Chris Feudtner. 2020. Seven types of uncertainty when clinicians care for pediatric patients with advanced cancer. Journal of Pain and Symptom Management 59: 86–94. https://doi. org/10.1016/j.jpainsymman.2019.08.010. Hines, Stephen C. 2001. Coping with uncertainties in advance care planning. Journal of Communication 51: 498–513. https://doi.org/10.1111/j.1460-­2466.2001.tb02893.x. Horn, Ruth J. 2014. Advance directives in English and French law: Different concepts, different values, different societies. Health Care Analysis 22: 59–72. https://doi.org/10.1007/ s10728-­012-­0210-­7. Horn, Ruth. 2013. Euthanasia and end-of-life practices in France and Germany. A comparative study. Medicine, Health Care and Philosophy 16: 197–209. https://doi.org/10.1007/ s11019-­011-­9357-­5. ———. 2018. The ‘French exception’: the right to continuous deep sedation at the end of life. Journal of Medical Ethics 44: 204–205. https://doi.org/10.1136/medethics-­2017-­104484. ———. 2020. Law, public debates and professionals’ attitudes: A comparative study on the use of advance directives in England, France and Germany. In Contemporary European perspectives on the ethics of end of life care, ed. Nathan Emmerich, Pierre Mallia, Bert Gordijn, and Francesca Pistoia, 259–276. Cham: Springer. Huxtable, Richard, and Ruth Horn. 2013. Continuous deep sedation at the end of life. In Continuous sedation at the end of life: Ethical, clinical and legal perspectives, ed. Sigrid Sterckx, Kasper Raus, and Freddy Mortier, 160–176. Cambridge: Cambridge University Press. Jankélévitch, Vladimir. 2017. La Mort. Paris: Flammarion. Jimenez, Geronimo, Woan Shin Tan, Amriit K. Virk, Chan Kee Low, Josip Car, and Andy Hau Yan Ho. 2018. Overview of systematic reviews of advance care planning: Summary of evidence and global lessons. Journal of Pain and Symptom Management 56: 436-459.e25. Jox, Ralf J., Jürgen in der Schmitten, and Georg Marckmann. 2015. Ethische Grenzen und Defizite der Patientenverfügung. In Advance care planning. Von der Patientenverfügung zur gesundheitlichen Vorausplanung, eds. Michael Coors, Ralf J. Jox, and Jürgen in der Schmitten, 23–38. Stuttgart: Kohlhammer. Kastborn, Lisa, Marit Karlsson, Magnus Falk, and Anna Milberg. 2020. Elephant in the room – Family members’ perspectives on advance care planning. Scandinavian Journal of Primary Health Care 38: 421–429. Kim, Kangmoon, and Young-Mee Lee. 2018. Understanding uncertainty in medicine: Concepts and implications in medical education. Korean Journal of Medical Education 30: 181–188. https://doi.org/10.3946/kjme.2018.92. Klinkhammer, Gisela. 2014. Palliative Sedierung: Mit großer Sorgfalt und klinischer Erfahrung. Deutsches Ärzteblatt 111: A-1552. Knobloch, Leanne K. 2010. Relational uncertainty and interpersonal communication. In New directions in interpersonal communication research, ed. Sandi W. Smith and Steven R. Wilson, 69–93. Thousand Oaks, CA: SAGE. Le Figaro. 2019. Fin de vie: Seuls 13% des Français ont rédigé leurs directives anticipées. Published online on 21 May 2019. http://www.lefigaro.fr/flash-­actu/fin-­de-­vie-­seuls-­13-­des-­ francais-­ont-­redige-­leurs-­directives-­anticipees-­20190521. Accessed 29 September 2019. Leeman, Cavin P. 2002. Physician-assisted death. The New England Journal of Medicine 347: 1041–1043. Leitlinienprogramm Onkologie. 2019. Erweiterte S3-Leitlinie. Palliativmedizin für Patienten mit einer nicht-heilbaren Krebserkrankung, Langversion 2.0. AWMF-Registernummer: 128/001OL. https://www.leitlinienprogramm-­onkologie.de/fileadmin/user_upload/Downloads/ Leitlinien/Palliativmedizin/Version_2/LL_Palliativmedizin_2.0_Langversion.pdf. Accessed 27 September 2019. Maffoni, Marina, Piergiorgio Argentero, Ines Giorgi, and Anna Giardini. 2020. Healthcare professionals’ perceptions about the Italian law on advance directives. Nursing Ethics 27: 796–808.

52

E. Kuhn et al.

Materstvedt, Lars J., and Georg Bosshard. 2009. Deep and continuous palliative sedation (terminal sedation): Clinical-ethical and philosophical aspects. The Lancet Oncology 10: 622–627. https://doi.org/10.1016/S1470-­2045(09)70032-­4. McIntyre, Alison. 2019. Doctrine of double effect. In The stanford encyclopedia of philosophy, ed. Edward N. Zalta, Spring 2019 edition https://plato.stanford.edu/archives/spr2019/entries/ double-­effect/. Accessed 28 February 2021. MFT: Medizinischer Fakultätentag der Bundesrepublik Deutschland e.V. 2015. Nationaler Kompetenzbasierter Lernzielkatalog Medizin (NKLM). http://www.nklm.de/files/nklm_ final_2015-­07-­03.pdf. Accessed 20 February 2020. Mishel, Merle H. 1988. Uncertainty in illness. Image Journal of Nursing Scholarship 20: 225–232. https://doi.org/10.1111/j.1547-­5069.1988.tb00082.x. Müller-Busch, H.  Christof. 2016. Entscheidungen in Grenzsituationen und ärztliches Selbstverständnis. In Patientenverfügungen, ed. Arnd May, Hartmut Kreß, Torsten Verrel, and Till Wagner, 163–176. Berlin, Heidelberg: Springer. NECN: North of England Cancer Network. 2012. Palliative and end of life care guidelines for cancer and non-cancer patients. 3rd ed https://southtees.nhs.uk/content/uploads/NECN-­palliative-­ care-­guidelines.pdf. Accessed 27 September 2019. NHS. 2017. Coordinate my care. An introduction to professionals. https://www.coordinatemycare.co.uk/wp-­content/uploads/2018/12/cmc-­introduction-­for-­professionals.pdf. Accessed 28 February 2021. NICE: National Institute for Health and Care Excellence. 2011. End of life care for adults. https:// www.nice.org.uk/guidance/qs13/resources/end-­of-­life-­care-­for-­adults-­pdf-­2098483631557. Accessed 27 September 2019. NN. 2002. Medical professionalism in the new millennium: A physician charter. Annals of Internal Medicine 136: 243–246. Oechsle, Karin, Lukas Radbruch, Carolin Wolf, and Christoph Ostgathe. 2017. SOP – Palliative Sedierung. Der Onkologe 23: 469–475. https://doi.org/10.1007/s00761-­017-­0240-­8. Payne, Sheila A., and Jeroen Hasselaar. 2020. European palliative sedation project. Journal of Palliative Medicine 23: 154–155. Perkins, Henry S. 2007. Controlling death: The false promise of advance directives. Annals of Internal Medicine 147: 51–57. https://doi.org/10.7326/0003-­4819-­147-­1-­200,707,030-­00008. Pierce, Penny F. 1997. What is an ethical decision? Critical Care Nursing Clinics of North America 9: 1–11. https://doi.org/10.1016/S0899-­5885(18)30286-­7. Politi, Mary C., Paul K.J.  Han, and Nananda F.  Col. 2007. Communicating the uncertainty of harms and benefits of medical interventions. Medical Decision Making 27: 681–695. https:// doi.org/10.1177/0272989X07307270. Quenot, Jean-Pierre, Fiona Ecarnot, Nicolas Meunier-Beillard, Auguste Dargent, Audrey Large, Pascal Andreu, and Jean-Philippe Rigaud. 2017. What are the ethical aspects surrounding the collegial decisional process in limiting and withdrawing treatment in intensive care? Annals of Translational Medicine 5: S43. https://doi.org/10.21037/atm.2017.04.15. Regan, Helen M., Mark Colyvan, and Mark A.  Burgman. 2002. A taxonomy and treatment of uncertainty for ecology and conservation biology. Ecological Applications 12: 618–628. https://doi.org/10.2307/3060967. Ricot, Jacques. 2010. Ethique du soin ultime. Rennes: EHESP. Rietjens, Judith A.C., Rebecca L. Sudore, Michael Connolly, Johannes J. van Delden, Margaret A.  Drickamer, Mirjam Droger, Agnes van der Heide, et  al. 2017. Definition and recommendations for advance care planning: international consensus supported by the European Association for Palliative Care. The Lancet Oncology 18: e543–e551. https://doi.org/10.1016/ S1470-­2045(17)30582-­X. Schnell, Martin W. 2018. Diversität und Lebensende: Zwischen Philosophie und Palliative Care. Imago Hominis 25: 99–104.

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Schnell, Martin W., Christian Schulz-Quach, Susanne Haller, and Christine Dunger. 2020. Ethik und Recht. In Basiswissen Palliativmedizin, ed. Martin W.  Schnell and Christian Schulz-­ Quach, 3rd ed., 219–251. Berlin: Springer. Seale, Clive. 2010. Continuous deep sedation in medical practice: A descriptive study. Journal of Pain and Symptom Management 39: 44–53. https://doi.org/10.1016/j.jpainsymman.2009.06.007. Simpkin, Arabella L., Alisa Khan, Daniel C. West, Briana M. Garcia, Theodore C. Sectish, Nancy D. Spector, and Christopher P. Landrigan. 2018. Stress from uncertainty and resilience among depressed and burned out residents: A cross-sectional study. Academic Pediatrics 18: 698–704. https://doi.org/10.1016/j.acap.2018.03.002. Simpkin, Arabella L., and Richard M. Schwartzstein. 2016. Tolerating uncertainty – The next medical revolution? New England Journal of Medicine 375: 1713–1715. https://doi.org/10.1056/ NEJMp1606402. Stolberg, Michael. 2017. A history of palliative care, 1500–1970: Concepts, practices, and ethical challenges. Cham: Springer. Sudore, Rebecca L., and Terri R. Fried. 2010. Redefining the “Planning” in advance care planning: preparing for end-of-life decision making. Annals of Internal Medicine 153: 256–261. Tannert, Christof, Horst-Dietrich Elvers, and Burkhard Jandrig. 2007. The ethics of uncertainty. In the light of possible dangers, research becomes a moral duty. EMBO Reports 8: 892–896. https://doi.org/10.1038/sj.embor.7401072. Twycross, Robert. 2019. Reflections on palliative sedation. Palliative Care: Research and Treatment 12: 1178224218823511. https://doi.org/10.1177/1178224218823511. der Heide, Van, Bregje Onwuteaka-Philipsen Agnes, Mette L. Rurup, Hilde M. Buiting, Johannes J.M. van Delden, Johanna E. Hanssen-de Wolf, Anke G.J.M. Janssen, H. Roeline W. Pasman, Judith A.C. Rietjens, Cornelis J.M. Prins, Ingeborg M. Deerenberg, Joseph K.M. Gevers, Paul J. van der Maas, and Gerrit van der Wal. 2007. End-of-Life Practices in the Netherlands under the Euthanasia Act. New England Journal of Medicine 356: 1957–1965. Verkerk, Marian, Eric van Wijlick, Johan Legemaate, and Alexander de Graeff. 2007. A national guideline for palliative sedation in The Netherlands. Journal of Pain and Symptom Management 34: 666–670. Vogd, Werner. 2018. Unsicherheit als das zentrale Bezugsproblem der ärztlichen Profession. In Ärztliche Tätigkeit im 21. Jahrhundert – Profession oder Dienstleistung, ed. Sebastian Klinke and Martina Kadmon, 55–68. Berlin, Heidelberg: Springer. Von Weizäcker, Viktor. 1926. Der Arzt und der Kranke. Stücke einer medizinischen Anthropologie. Suhrkamp: Frankfurt am Main. Weixler, Dietmar, Sophie Roider-Schur, Rudolf Likar, Claudia Bozzaro, Thomas Daniczek, Angelika Feichtner, Christoph Gabl, Bernhard Hammerl-Ferrari, Maria Kletecka-Pulker, Ulrich H.J. Körtner, Hilde Kössler, Johannes G. Meran, Aurelia Miksovsky, Bettina Pusswald, Thomas Wienerroither, and Herbert Watzke. 2017. Leitlinie zur Palliativen Sedierungstherapie (Langversion). Ergebnisse eines Delphiprozesses der Österreichischen Palliativgesellschaft (OPG). Wiener Medizinische Wochenschrift 167: 31–48. Wheatley, Victoria J., and J. Idris Baker. 2007. “Please, I want to go home”: Ethical issues raised when considering choice of place of care in palliative care. Postgraduate Medical Journal 83: 643–648. https://doi.org/10.1136/pgmj.2007.058487. Woods, Simon, and Vibeke Graven. 2020. Intentions and the doctrine of double effect. In Contemporary European perspectives on the ethics of end of life care, ed. Nathan Emmerich, Pierre Mallia, Bert Gordijn, and Francesca Pistoia, 169–179. Cham: Springer. ZEKO. 2019. Stellungnahme “Advance Care Planning” (ACP). Deutsches Ärzteblatt. https://doi. org/10.3238/arztebl.2019.zeko_sn_acp_01. Eva Kuhn  is affiliated with the Section Global Health (IHPH) at the University Hospital Bonn. Eva has an academic background in Catholic theology and law. Her main fields of research are digital (mental) health ethics, healthy work for health-­care workers including professional ethics and

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occupational health ethics. She is certified as a Healthcare Ethics Counselor and particularly dedicated to practice-­oriented academic teaching. Elodie Camier-Lemoine  earned her PhD in Philosophy (with a focus on medical ethics regarding end-of-life) at Jean Moulin University (Lyon, France). She is currently project manager at the center of ethics in the region of Auvergne Rhône-­Alpes in France. Her missions includes teaching and training health care students and professionals, conferences, study groups and the organization of public debate, in the field of medical ethics. She is also teaching bioethics at Lyon Catholic University, for students in science, with a focus on the topic of new technologies. She is a member of the Ethics Commitee of the University Hospital of Lyon and the Ethics Commitee on digital health of the region Auvergne Rhônes-Alpes.  Bradley Lonergan  grew up in Kent, England before studying at Imperial College London between 2011 and 2017. Dr. Lonergan gained a 1st Class BSc degree in Neuroscience & Mental Health and Medicine MBBS.  He undertook the Academic Foundation Programme at Royal Lancaster Infirmary and Lancaster University 2017–2019. He has published articles in medical, ethical and educational fields of medicine. He currently works in West London as a internal medical registrar in the NHS, with the plan to train in geriatrics. Christine Dunger  (Ph.D., MSc, BScN, RN) studied from 2005 to 2011 at Witten/Herdecke University (UWH), where she also received her Ph.D. from 2011 to 2017. Currently, she works at the Chair of Social Philosophy and Ethics in Health Care at UWH and at the Institute for Nursing Science and Practice at Paracelsus Medical University, Salzburg. She is also advisory board member of the Journal “pflegen:palliative”, co-editor of the Journal “Pflege&Gesellschaft” as well as the book series  “Palliative care and Research” (Springer Publisher) and member of the Ethics Committee of the German Society for Nursing Science. Research interest: nurses’ decision-making, end-of-life care, ethics, research ethics, qualitative research.

Chapter 4

Why Me? – The Concept of Physicians’ Spiritual Self-Care: A Contribution to Professional and Organisational Ethics Eva Kuhn

4.1  Why Me? – An Introduction to Spiritual Self-Care A bundle of issues comes up at the end of life, among these the unanswerable question of ‘Why me?’ – ‘Why me?’ is a question not only frequently raised by patients struggling with their dire medical situation. It is also asked by health-care professionals. A clinician, for instance, might wonder why it is them that has to explain a devastating diagnosis to a patient. The same thought may cross the mind of a caregiver on their fourth consecutive shift with patients dying on their ward. The question of ‘Why me?’ is a question of meaning, sense and purpose. It cannot be answered with the biopsychosocial model that is prevalent in medicine (Borrell-­ Carrió et al. 2004; Engel 1977) but includes a dimension that transcends that model, namely, spirituality. While spirituality regarding patient care has been recognised as an integral part of palliative care, its relevance for health-care staff is still overlooked. The World Health Organisation (WHO) included the spiritual dimension regarding patient care in their definition of palliative care in 2002: “Palliative care […] integrates the psychological and spiritual aspects of patient care” (WHO 2002). In part motivated by the WHO, Spiritual Care for patients at the end of life has gained attention throughout the last decade (Gordon and Mitchell 2004; Nolan et  al. 2011), also leading, for example, to an eleven-part series on Spiritual Care in the British Journal of Nursing (starting with Fowler 2017). Most approaches internationally focus on Spiritual Care provided by professional caregivers (Abell et  al. 2018; Kincheloe et al. 2018). The main representatives of Spiritual Care in Germany and Switzerland, Eckhard Frick, Traugott Roser, Simon Peng-Keller and Constantin E. Kuhn (*) Section Global Health, Institute of Hygiene and Public Health, University Hospital Bonn, Bonn, Germany e-mail: [email protected] © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_4

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Klein and their teams, have dedicated themselves particularly to the development of training concepts for health professionals (Helo 2017; Paal et al. 2014) as well as the elaboration and implementation of tools for ‘spiritual anamnesis’, which are particularly relevant for physicians (Riedner and Hagen 2011). Their work reflects the WHO’s understanding of palliative care as “an approach that improves the quality of life of patients and their families” (WHO 2002). Consequently, their primary focus is on Spiritual Care for patients and their question of ‘Why me?’. This and similar questions often arise when physicians confront patients and their relatives with bad news (see also Azzopardi et al. in this volume). A question such as ‘Why me?’ asked by clinicians, professional caregivers and other medical staff reveals that caring for patients at the end of life is also highly challenging for them. However, the health-­care team around the patient is an aspect that the WHO definition does not cover. Physicians’ own health particularly came to the fore with the amendment of the Declaration of Geneva in 2017: “I WILL ATTEND TO my own health, well-being, and abilities in order to provide care of the highest standard” (WMA 2017). The amended sentence emphasises each physician’s responsibility not only for their patients but also for themselves. They pledge to provide both other- and self-care. The inclusion of self-care in a document such as the Declaration of Geneva that directly addresses the medical profession, suggests that the traditional understanding of medical professionalism has to be broadened. Professionalism does not only imply actions, responsibilities, attitudes that are directed from the profession towards patients and society (e.g., as proposed in the Physician Charter that Seidlein and Salloch refer to in their introduction to this volume). It is rather that medical professionalism in the sense of the Declaration of Geneva also turns the gaze to the profession itself. Following this line of argument, physicians’ responsibility for themselves and their self-care will be subsumed under the concept of medical professionalism. This approach is further underpinned by research on the quality of care as one core of medical professionalism: The well-being of physicians, and hence attending to their own health, are important factors of the provision of high-­ quality care (Aeschbach et al. 2021; see Sect. 4.3). Like anyone else, physicians can attend to their own health, for example, by practising mindfulness-based stress reduction, strengthening resilience, engaging in physical activity  – and/or enhancing their spiritual well-being. In this vein, Spiritual Care not only for patients but also for oneself might be considered a professional practice of physicians. As such, it is expected to fit with medical professionalism and professional ethics. This raises the question of whether (and how) Spiritual Self-Care – performed on its own or in a team setting – is compatible with professional ethics. Parting from the ‘traditional’ concept of Spiritual Care in 4.2, the article’s first aim is to establish profoundly the concept of physicians’ Spiritual Self-­Care and justify its importance (Sect. 4.3). The article focuses explicitly on the application of Spiritual Self-Care to physicians and their professional ethics to fully consider each health-care profession’s ethical code or code of conduct and their unique tasks, situation and self-perception. On that basis, Sect. 4.4 sets out to reason for the compatibility of Spiritual Self-Care and

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professional ethics. This leads on to the second proposition, the organisational anchorage of Spiritual Self-­Care in hospitals (especially on the palliative care ward) or other health-care institutions (Sect. 4.5). Section 4.6 complements the ethical approach with a call for extending the research on and spreading the practice of Spiritual Self-Care. One of the most important next steps is the application of Spiritual Self-Care to other health-care professions, their specific situation in outpatient and inpatient care, and an adaptation of the concept to their professional code.

4.2  The Concept of Spiritual Care Before approaching the two research questions, the concept of Spiritual (Self-)Care is clarified by reflecting briefly on the three terms ‘spirituality’, ‘care’, and ‘Spiritual Care’. These conceptual clarifications are followed by a practical insight into Spiritual Care for patients. The following paragraphs address all professions equally, as Spiritual Care itself is not bound to a certain group of health-care professionals. With an understanding of the ‘traditional’ concept in mind, the further elaboration on Spiritual Self-Care, however, is pared down to the case and professional ethics of physicians.

4.2.1  Conceptual Clarifications “Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.” (Puchalski et al. 2009, 887) This definition of ‘spirituality’ was agreed upon at an interdisciplinary and interprofessional Consensus Conference in 2009 that dealt particularly with the concept of Spiritual Care as a component of palliative care. The Task Force for Spiritual Care in palliative care of the European Association for Palliative Care has been working on the topic of Spiritual Care for the last decade in the European context. This article follows the Task Force’s fairly broad understanding of ‘spirituality’. Firstly, it includes existential challenges that someone faces. These might be questions concerning one’s identity and questions of meaning, suffering or death. The challenges can also centre on any other emotion, such as hope, love, joy, freedom, but also guilt, shame, despair, forgiveness and reconciliation. Secondly, spirituality can comprise and be nurtured by value-based attitudes and reflections. It covers those domains that are of utmost importance for a person, from relationships to others and oneself to culture, nature, art and life itself. Thirdly, spirituality can encompass a certain faith, religious belief or practice, or designate one’s relationship with the ultimate, for example, God (Nolan et al. 2011). Consequently, ‘spirituality’ is not the same as and not as narrow and dogmatic as ‘religion’. It is much

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more inclusive than religion, and even considered by some authors as a basic anthropological constant (Jung-Borutta and Sitte 2016). This implies the danger that ‘spirituality’ can be turned into a borderless umbrella term and applied to every thought or doubt a patient or health-care professional shares (Heller 2017, 513). For the purpose of this article, ‘spirituality’, as the first element of ‘Spiritual Care’, is, at least, part of all those situations where the ‘big questions’ of why, whereto, wherefrom, or wherefore arise. The second element of the term ‘Spiritual Care’ is similarly vague and broad. Following James Marcum, who is oriented towards Joan Tronto’s approach to Care Ethics (see also Kaiser et al. in this volume), ‘care’ is henceforth understood “not only [as] a natural concern motivating a physician to help, i.e. to care about, but also [as] an ability to act on the part of a patient, i.e. to take care of” (Marcum 2012, 108). Care is reciprocal. It is an act of providing a person what they need, i.e. care-­ giving, and its responsiveness, i.e. care-receiving (Tronto 1993, 105–108). Consequently, and transferred back to health-care, this implies that ‘(Spiritual) Caring’ is not synonymic to ‘nursing’ and does not contradict medical ‘curing’ (Frick 2009, 150). In fact, and important to stress, Tronto’s four phases of care, namely ‘(spiritually) caring about’, ‘taking (spiritual) care of’, ‘(spiritual) care-­ giving’ and ‘(spiritual) care-receiving’, are tasks and experiences that are not only shared by professional caregivers but also by physicians, health-care professionals generally and, in the larger picture, all humans.

4.2.2  S  piritual Care in the Health-Care Professional-Patient Relationship Considering these clarifications, ‘Spiritual Care’ is “completely person centred and makes no assumptions about personal conviction or life orientation. Spiritual Care is not necessarily religious. Religious care, at its best, should always be spiritual” (Gordon and Mitchell 2004, 646). Spiritual Care is the caring for, i.e. enabling, preserving and protecting of a patient or health-care professional’s personal identity in an existential crisis (Mathwig 2014, 25–26). Some scholars and practitioners also explicitly include the patient’s relatives in their spiritual caring (e.g. the 4th edition of the Clinical Practice Guidelines for Quality palliative care by the National Coalition for hospice and palliative care 2018, 32–34). Spiritual Care is generally carried out in a certain attitude that makes use of different techniques, such as deep listening, compassionate presence, and biographical or explicit bedside spirituality (Paal et al. 2014, 112). The ‘traditional’ concept of Spiritual Care for patients by health-care professionals is guided by the principle of optimal medical treatment. Treatment can be optimal only if all relevant factors of a patient’s health and well-being are taken into account. One of these factors, especially in a life-threatening condition and palliative care, might be and often is spirituality or religion (Peng-Keller 2017, 1339;

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extensively on Spiritual Care in the context of palliative care, see Gijsberts et al. 2019). Spiritual Care for patients is not assigned to a special ‘Spiritual Caregiver’, which is one of its major differences to clinical pastoral care. Anyone in the health-­ care team might provide Spiritual Care and it is, therefore, a task shared between and allotted equally to all disciplines (Frick 2015, 73). Consequently, physicians cannot outsource or delegate this task to another health-care profession; nor are they solely responsible for its provision. It is rather that the patients themselves choose with whom they want to speak about spiritual matters and receive Spiritual Care from. Furthermore, they provide the ‘definition’ of the spirituality at stake – either verbally (e.g. “as an agnostic”) or by symbolic communication (e.g. a picture, a holy book or prayer chain on the bedside table; Bürgi and Frick 2017, 526–527; Frick 2009, 150). This places high demands on the health-care professional that provides the Spiritual Care to the patient. They “should be able to meet patients’ spiritual needs, to raise and discuss spiritual/existential issues, […] integrate spirituality in the care plan, handle issues with respect and support, and be conscious of the boundaries in terms of cultural taboos, values and choices” (Paal et al. 2014, 112). This requires at least a basic knowledge of various religions and spiritualties and open-­mindedness and tolerance towards other understandings of ‘spirituality’. Not only do the interprofessional co-operation and collaboration regarding Spiritual Care but also the pluralism of values and spiritual attitudes represented on a ward pose challenges within the physicians’ team and upon health-care staff. The contact with other belief systems and value hierarchies may provoke uneasiness. Health-care professionals should have the competence to “[d]emonstrate the reflective capacity to consider the importance of spiritual and existential dimensions in their own lives” (Gamondi et al. 2013, 141) to classify such unease correctly and relate it to the differing spirituality and/or values. The European Association for Palliative Care’s White Paper on Palliative Care Education states very clearly that one cannot educate health-care staff on Spiritual Care or implement it in an organisation without first looking at the professionals themselves and considering their spirituality.

4.3  The Concept of Spiritual Self-Care Even acknowledging the importance of including reflections on health-care professionals, in the following, a physician’s own spirituality in Spiritual Care education does not necessarily lead to Spiritual Self-Care. Therefore, this section sets out to substantiate why Spiritual Self-Care should have a key role to play in health-care organisations and particularly in end-of-life care. As this concept is hardly known, the second half hints at some Spiritual Self-Care practices. This is to deepen its understanding before discussing the research questions.

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4.3.1  Theoretical and Empirical Underpinning Physicians’ self-care is an almost entirely neglected topic – in science and in the daily work routine of a hospital, hospice or nursing home. However, on the normative level of Care Ethics, ‘care’ is not only something that is linked to others (caring about others, taking care of others, giving care to others, receiving care from others). It is rather that “self-care precedes and sustains caring for others”, as Daniel Engster (2005, 66) puts it. While there is not much research on physicians’ well-being, a lot is known about their impairment and stressors (Weiner et al. 2001, 19). The few data published on resource-oriented approaches especially tackle interventions to improve self-care and centre mainly on resilience and mindfulness-based stress reduction (Cleary et al. 2018; Orellana-Rios et al. 2017). Self-care includes at least four dimensions for physicians and everyone else: a physical, a psychological, a social and a spiritual aspect. The commonly known stressors in health-care, such as work overload, understaffing, and communicative and relational disturbances within the team, with patients or relatives (Gélinas et al. 2012; Kvarnström 2008), can be met with the biopsychosocial model of self-care. Nevertheless, working under these stressors, constantly being confronted with downsizing and reorganisation, might evoke questions among physicians and other health-care staff such as: ‘Why am I still working here?’, ‘Are my efforts pointless?’, or ‘Does my job still make any sense to me, to the patients?’ (Glasberg et al. 2007). Already, such mundane questions of meaning cannot be met completely with the biopsychosocial explanatory model. Moreover, it leaves a significant bundle of personal and team challenges unanswered that are specific to end-of-life care. In the latter, physicians are frequently exposed to refractory conditions, dying and death. Physicians might become frustrated and perceive themselves as losing control over the situation, especially in cases where a patient’s suffering cannot be relieved. Staff caring for a dying patient for prolonged periods of time might experience strong grief, which they cannot appropriately reconcile with their role (Perez et al. 2015, 332). This might lead to or be caused by compassion fatigue.1 Nurses and physicians report distress or even despair as they try to relieve a patient’s suffering without success and start to suffer with the patient and from their refractory condition. Depending on their personal preconditions, the frequent exposure to such suffering can lead to a lessening of empathy and compassion, and finally, to symptoms such as depression, anxiety, resentment and hopelessness (Laor-Maayany et  al. 2019; Lombardo and Eyre 2011). Moreover, the “[c]onstant confrontation with the deaths of others may result […] in repeated re-evaluations of their [the physicians’] own mortality and re-examination of the meaning of their lives”

1  Compassion fatigue was first defined by Charles R.  Figley (1995, 7) as “natural consequent behaviors and emotions resulting from knowing about a traumatizing event experienced by a significant other  – the stress resulting from helping or wanting to help a traumatized or suffering person”.

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(Wasner et al. 2005, 102). The mystery of death and dealing with uncertainty can create spiritual and/or existential suffering, spiritual distress and raise a variety of existential questions (see also Camier-Lemoine in this volume). Not only patients and their relatives, but also their physicians ask themselves the ‘big questions’ of why, whereto, wherefrom and wherefore – and might be unable to find an answer, unable to make sense of and attribute meaning to their experiences (Lichter 2019, 95). These experiences and questions hint at the spiritual dimension of physicians’ work and make spiritual and any other kind of “self-care within the high stress and emotionally charged environment of palliative care, where spiritual and existential issues are prominent, […] perhaps more of a necessity than an optional extra” (Sansó et al. 2015, 204). This may also be considered as a necessity in view of medical professionalism. Demanding working conditions pertinent for health-care organisations together with compassion fatigue and unprocessed or suppressed emotions when confronted with patients that suffer at their end of life often leads to poor well-being and particularly high stress levels (up to ‘burnout’). In turn, this is related to an increase in medical errors and decrease of quality of care (Yates 2020) and comprises a violation of the fundamental principle of patient welfare as set in the Charter on Medical Professionalism (ABIM Foundation et al. 2002). Following this rationale, self-care in the sense of “[c]aring for oneself to care for others” (Sanchez-Reilly et al. 2013) must be part of the reflection on (medical) professionalism towards patients and society. However, this implicit – and via the Declaration of Geneva also explicit  – inclusion of self-care in all its dimensions in medical professionalism is not sufficient to answer if Spiritual Self-Care and professional ethics are compatible.

4.3.2  Practical Implications Physicians who are spiritual can use their spirituality or religious belief in various ways to cope with (spiritual) stress and enhance their well-being. Among these ways are activities such as praying, meditation, reading the holy book of their religion or attending church services (Weiner et al. 2001, 20). Spiritual Self-Care can also be integrated into one’s daily work routine as some kind of ritual – provided that it is possible and accepted to express one’s spirituality in the health-care institution (see below). One palliative care physician recounts, for example, in an interview study by Penderell and Brazil (2010, 418): “[Before I] walk in, [I] take some cleansing breaths and center [myself] and create this inner stillness”. In addition to such individual practices that are often unnoticed by colleagues, Spiritual Self-Care could also be addressed on a team or organisational level. Starting from the observation that “the SpWB [Spiritual Well-Being] of physicians continues to be neglected and their spiritual wellbeing is rarely known to other members of the health team” and based on the conviction that “[p]atients need a physician who is spiritually healthy” (Fang et al. 2011, 6), Fang and colleagues developed a ‘Physician’s Spiritual Well-Being Scale’ (PSpWBS) to assess a

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physician’s spiritual condition and reveal possible spiritual distress. To the best of the author’s knowledge, to date, this is the only scale of its kind and no adaptation of the Physician’s Spiritual Well-Being Scale, originally developed for the Chinese cultural and religious context, to Western beliefs and spirituality and/or other groups of health-care professionals has been presented. As the theoretical concept of Spiritual Self-Care is almost unknown in Western societies, practical applications are actually (nearly) non-existent. Some Spiritual Care training programmes include a teaching unit where participants, mainly palliative care professionals, have time to explore their own spirituality, reflect on their personal concept of death or confront themselves with the question of meaning (Wasner et al. 2005, 100–102). It seems reasonable to assume that such training units in themselves could already help health-care professionals to care for themselves spiritually and even have an influence on Spiritual Care indirectly for patients and caring in general. It is also reasonable to think of Spiritual (Self-)Care as a tool for team development because Spiritual Care is a shared task within health-care teams, not attributed to a specific profession and physicians do not have their usual ultimate responsibility. Talking openly and respectfully about each other’s value system, concept of meaning or directly about spirituality within a protected environment might contribute to a better mutual understanding and collaboration within the team (Baumann-­ Hölzle and Gasser 2016, 26).2

4.4  Spiritual Self-Care in the Light of Professional Ethics The previous sections have shown that Spiritual Self-Care is important for at least two reasons. On the one hand, Spiritual Self-Care for physicians enhances their understanding of patients’ spiritual needs and enables them to provide (better) Spiritual Care. On the other hand, self-care, as such, is of utmost importance and spirituality can be one dimension of physicians’ health and well-being which has a considerable impact on the quality of care and, therefore, on patients’ well-being. Despite these good reasons, doubts might arise whether and if so to what extent Spiritual Self-Care, performed by physicians either on their own or in a team setting, is compatible with professional ethics.3

2  Due to the different scope of the article, it is not possible to elaborate further on possible team interventions regarding Spiritual Self-Care. Nevertheless, further theoretical and empirical research on Spiritual Self-Care interventions on an individual, team and organisational level is of utmost importance. 3  For the question whether Spiritual Care for patients is compatible with professional ethics and particularly medical professionalism, see, for example, Winslow and Wehtje-Winslow (2007) and Post et al. (2000). To convince sceptics of the importance of Spiritual Care and to justify this concept ethically, Daniel P.  Sulmasy (2012) suggests five ethical principles for Spiritual Care for patients: patient-centredness, holism, discretion, accompaniment and tolerance.

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The professional ethics’, especially medical professionalism’s principles tackled by Spiritual Self-Care, are personal and professional integrity, professional neutrality and the vast principle of responsibility, as elaborated in the Charter on Medical Professionalism (ABIM Foundation et al. 2002). There is great scepticism of physicians towards religiosity and spirituality, particularly in European secular medicine (Stolberg 2017, 114). This is largely still based on the Hippocratic division between religion and medicine. Nowadays, within a society constituted on value-pluralism, professional neutrality seems at least as indispensable as in ancient Greece (Bürgi and Frick 2017, 523; Frick 2009, 146). Religious and ideological neutrality is part of professional integrity, as the latter “constitutes the value system of the professional group and defines the boundaries of acceptable practice” (Sikora and Fleischman 1999, 402). One can easily think of Spiritual Self-Care practices that would overrule professional integrity. An example cited often is the problem of proselytizing physicians. They are either zealous in missionising as lived in their religious community. Or they are totally convinced the faith that is a resource of recreation and source of energy for them will have the same ‘caring’ or even ‘curing’ effects on their patients or colleagues (Sulmasy 2012, 467). The physician might also violate their professional neutrality unconsciously. They might project their own needs, values and moral concepts onto their patients or colleagues. In this case, the professional’s own beliefs would guide their decisions and actions, lacking interfaith respect and overriding the patient’s (or colleagues) spirituality and corresponding convictions (of good treatment, good care, a good life). This illustrates, once again, that Spiritual Self-Care should not be encouraged without especially stressing the importance of the critical reflection of one’s spirituality and/or religiosity (Baumann-Hölzle and Gasser 2016, 26; Gratz and Roser 2014, 238). This is not opposed to personal integrity. A physician can still “appeal to his/her own personal integrity in order to refuse to perform [a medical] action” if they cannot realise it for personal, often religious or spiritual, reasons (Spranzi 2019). On the one hand, the physician’s conscientious objection to treatment can be said to impose their (religious or spiritual) views on the patient, particularly if the patient is not referred to another specialist and/or timely access to medical services is not guaranteed (e.g. the European Court of Human Rights 2003/1 Case of ‘Pichon and Sajous vs. France', 2 October 2001, No. 49853/99; Cook and Dickens 2006). However, and, on the other hand, one could also argue that drawing upon personal integrity for spiritual/religious reasons and not forcing oneself to act contrary to one’s deepest beliefs is part of caring for oneself in a spiritual and psychologically healthy manner (Sulmasy 2017). Conscientious objections might even be seen as an instrument for physicians  – and nurses  – to act morally responsibly, in line with their own moral compass (Pilkington 2019).4 In the eyes of Winslow and 4  In ethical scholarship, conscientious objection is critically discussed and subject to a huge debate (e.g. Cummins 2019; Sulmasy 2017) or the idea is rejected completely (e.g. Schuklenk and Smalling 2017). Magelssen (2012) and Wicclair (2019), for example, both present criteria to evaluate whether a conscientious objection is morally acceptable.

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Wehtje-Winslow (2007), it is even more than that: based on the definition of spirituality introduced above, developing personal and moral integrity is connected to spirituality, “as both have to do with the core of personhood”. This leads them to the ethical guideline that “[h]ealth care professionals who care for the spiritual needs of patients should seek to understand their own spirituality” (Winslow and Wehtje-­ Winslow 2007, 65). In summary, Spiritual Self-Care encounters one significant limitation in professional integrity, namely, neutrality. If Spiritual Self-Care is implemented and practiced within this border, it is deemed compatible with professional ethics. As spirituality can be a core element of personal integrity, one can even argue that it is part of physicians’ moral obligations to deepen their understanding of their spirituality and, therefore, of themselves. Professional integrity is determined by duties, obligations and responsibilities. The primary responsibility is to serve the patients’ interests, respect their autonomy and provide high-quality care and treatment.5 The Physician Charter also holds physicians “responsible for maintaining […] team skills necessary for the provision of quality care” as well as work collaboratively (ABIM Foundation et al. 2002). These professional responsibilities hint at further reasons for and against Spiritual Self-­ Care. In a team-setting, it is the responsibility of physicians to “respect the rights and preferences of patients, colleagues, and other health professionals” (WMA 2006). Furthermore, all staff members and especially supervisors, i.e. physicians in charge have to prevent the instrumentalization of Spiritual Self-Care, for example, impede the introduction of the “Faith Factor” to sweep communication problems or opposed needs under the carpet (Frick 2009, 146). In addition to these team-related responsibilities, the amended Declaration of Geneva emphasises another part of physicians’ responsibility: the responsibility for oneself, one’s health, well-being and abilities. In that vein, Spiritual Self-Care can be seen as one way for physicians to obey the moral imperative inherent in the amendment. This analysis shows a similar picture as the one concerning integrity: under certain conditions, the responsible practice of Spiritual Self-Care on the job is possible. Regarding individual practice, Spiritual Self-Care and any other kind of self-care is part of fulfilling the physician’s pledge. To sum up, reflecting on Spiritual Self-Care in the light of physicians’ professional ethics provides a nuanced picture: both concepts are compatible within certain limits. These boundaries are defined by the ethical principles of integrity, most of all, professional neutrality, and responsibility (for others and oneself). It is up to further research to point out clear boundaries, suggest ethical guidelines and conduct practical case studies to harmonise physicians’ Spiritual Self-Care, patient care and professionalism. Moreover, further boundaries of Spiritual Self-Care have to be set up regarding other health-care professions’ ethical codes, for example, The ICN Code of Ethics for Nurses (International Council of Nurses 2012) or the World

5  For a justification of the physicians’ or caregivers’ responsibility to provide Spiritual Care for patients, see, for example, Peng-Keller (2017) or Casarez and Engebretson (2012, 2101).

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Confederation for Physical Therapy policy statement on Ethical Responsibilities of Physical Therapists (WCPT 2017). In addition to examining the compatibility between Spiritual Self-Care and professional ethics, i.e. focusing on the person who practices Spiritual Self-Care, it is important to take into account that self-care of any kind does not take place in a vacuum. The single physician is part of a much bigger health-care organisation, such as a hospital or hospice. This institutional embeddedness of physicians raises the question how Spiritual (Self-)Care as an interprofessional, interdisciplinary and cross-hierarchical concept can be anchored in an organisation. This question also broadens the focus to other health-care professions again, as they are equally institutionally embedded.

4.5  Spiritual Self-Care in the Light of Organisational Ethics Responsibility for one’s health and well-being in health-care organisations does not only lie with the single physician. The individual responsibility, as stressed by the Declaration of Geneva, is only one side of the coin and addresses individual behaviour. On the other side, (Spiritual) Self-Care must also be enabled and, ideally, encouraged by the organisation as such. As with any kind of health promotion, the employer basically has the responsibility to avoid stressful and sickening working conditions and provide a supportive work environment: “The obligation to care for the patient entails the obligation to care [and provide care] for the self” (Cole and Carlin 2009, 1415). As Spiritual Care is interprofessional, interdisciplinary and not necessarily restricted to end-of-life care, it cannot be clearly attributed to one profession, ward or hierarchical level. This raises the question of the organisational anchorage of Spiritual Self-Care in a health-care organisation. At first sight, as a person-centred approach, Spiritual Self-Care should be located as close to the employees as possible (Gratz and Roser 2014, 237). The Consensus Conference mentioned above calls for an integration of the topics of spirituality, self-care, resiliency and compassion in team meetings where they should be discussed and reflected on regularly. However, the authors especially highlight the bigger picture and the role of the health-care institution as such. They recommend, for example, an inclusion of these topics in training curricula and the introductory session for new staff. Furthermore, they suggest that the “interprofessional team should be encouraged and given time for regular and ongoing self-examination” (Puchalski et al. 2009, 901). The Consensus Conference document does not identify the person or department responsible for bringing forward these topics in the hospital. Due to the comprehensive character of the recommendations – from professional development to an environment that fosters self-caring behaviour and team interventions – it would be best anchored in the executive board of the health-care organisation. Another reason for this top-down approach is that the encouragement of single teams might fail (or at least not take full effect) if there is not a positive attitude towards spirituality within the health-care institution (Dinges 2016, 84) and, consequently, Spiritual Self-Care (and Spiritual Care for patients) is not accepted.

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Therefore, anchoring Spiritual Self-Care in a health-care organisation proves to be difficult: on the one hand, it should be close to the ‘self’, the single employee, especially as spirituality is a highly sensitive and even intimate topic (Puchalski et al. 2009, 900). On the other hand, given the general scepticism towards spirituality and the steep hierarchies, particularly among physicians, in health-care organisations (Brennan and Davidson 2019), the implementation and acceptance of Spiritual Self-Care practices rely heavily on the directors and chief physicians’ attitudes and efforts. Consequently, in an ideal health-care institution, Spiritual Self-Care is anchored on different levels: on the management level, on the individual level, on a team and/or professional group level (e.g. for reflection and training purposes). They influence each other mutually and, thereby, nurture the organisational culture.6 Organisational culture is “defined as shared values, beliefs and related behaviours” and also “has relevance in incorporating spirituality and religion in health care” (Casarez and Engebretson 2012, 2104). The link between organisational culture and spirituality/religiosity is obvious in denominational hospitals, hospices and nursing homes. In secular health-care organisations, organisational culture and Spiritual (Self-)Care are both particularly nurtured by personal/team preferences and individual and organisational concepts of meaning and purpose. Reflecting on these convictions reveals the underlying value concept of an organisation and, therefore, contributes to an overarching organisational ethics. Graber and Johnson (2001, 47), for example, state that spirituality (here: Spiritual Self-Care) and health-care practice (here: organisational culture) share values such as compassion, respect and dignity as a common ground. Consequently, Spiritual Self-Care  – or more broadly: spirituality – resonates in a secular institution’s organisational ethics and mutually influences, broadens or narrows its ethical basis. In the light of Spiritual Care, Baumann-Hölzle and Gasser (2016) speak of the ‘ethics of an organisation’ as an ‘integrative ethics of responsibility’. They see the main task of this ethics approach as creating a dialogue between the health-care organisation’s employees who might adhere to different moral concepts, values and ideas of a meaningful life. This dialogue reflects back on the organisational culture and helps to form shared values. These values are, to some extent, influenced by the employees’ spiritual/religious beliefs and by their biopsychosocial needs as well as their corresponding professional ethics. In the ideal health-care organisation, the three levels – individual professional, team (or professional group) and executive board – share and nurture an organisational culture spiritually, ethically, socially and practically. It is the organisation’s culture and value system where Spiritual Self-Care as an underlying attitude is enrooted. However, it has to be brought to life and spelled out in practice by all three 6  Recent research implies that each organisation has more than one organisational culture. Rather, it can be distinguished between a perceived and an actual organisational culture as well as identified as a couple of different subcultures, such as team cultures or ward cultures. For this discussion in the business context see, for example, Martin (2014). For the comparatively recent discussion on the adaptation of organisational culture as a management concept to health-care institutions, see, among others, Bellot (2011).

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levels to have a lasting impact on the organisation, staff and patients. Therefore, Spiritual Self-Care is anchored neither in organisational culture nor in one of the three levels but in the organisation and its members and units as a whole. This requires future Spiritual Self-Care interventions to present a multidimensional approach and make sure that all levels are addressed and included.

4.6  W  hy Not Me? – A Call for Spreading the Concept of Spiritual Self-Care The question of ‘Why me?’ will not vanish with the implementation of Spiritual (Self-)Care. It is part of end-of-life care for patients, physicians and all the other health-care professionals involved. To do justice to its overarching, integrative character, the very next step for research is to have a close look at the Spiritual Self-Care of for example, nurses, physiotherapists and psychotherapists, its compatibility with their guiding ethical principles and integration into organisational culture and ethics. Regarding the case of physicians, Spiritual Self-Care is a concept that is – within certain boundaries – compatible with their professional ethics and, ideally, anchored in both the organisational culture of the health-care institution and the individual, team and management level. As a practice, it can facilitate dealing with or even prevent compassion fatigue, spiritual suffering and distress related to the constant confrontation with the uncertainty of death. Although its effectiveness still has to be proven in field trials, it remains to be hoped that the question of ‘Why me?’ will, sooner or later, be complemented by ‘Why not me?’: Why does my organisation not take care of me spiritually? Why do I not have access to Spiritual Self-Care training? However, and as one physician interviewed by Weiner et al. (2001, 22) points out: “It’s very important to have a balance between physical, spiritual, and mental health. This involves working out, eating right, having a spiritual dimension, community volunteerism, developing the mind, setting both short- and long-term goals, etc.” Spiritual Self-Care is important but it is only one dimension of the biopsychosocial-­spiritual model. It is up to health-care politics and medical professional associations to integrate spirituality into self-care – after having placed physicians’ self-care, as such, on their agendas! The same call goes to medical schools. Medical students, at least in the German-speaking countries, do not get in touch with the concept of Spiritual Self-Care qua curriculum (Paal et  al. 2014).7 Nevertheless, the questions for research and practice are not only how Spiritual (Self-)Care can become more accepted and how (self-)care competence can be operationalised. It is also important to have a closer look at the ‘big’ existential questions of why, whereto, wherefrom and wherefore from the health-care

7  So far, the curriculum for medical students only includes a session of 90 minutes on ‘traditional’ Spiritual Care. This overview in the German-speaking countries is provided during the obligatory palliative care course; cf. Paal et al. (2014).

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professionals’ point of view. This will not answer the question of ‘Why me?’, but it will help individuals, teams and whole organisations to cope better with the end of life – whether it is someone else’s or one’s own.

References Abell, Cathy H., Dawn Garrett-Wright, and Caitlyn E.  Abell. 2018. Nurses’ perceptions of competence in providing spiritual care. Journal of Holistic Nursing 36: 33–37. https://doi. org/10.1177/0898010116684960. ABIM Foundation, American Board of Internal Medicine, ACP-ASIM Foundation, American College of Physicians-American Society of Internal Medicine, European Federation of Internal Medicine. 2002. Medical professionalism in the new millennium: A physician charter. Annals of Internal Medicine 136: 243–246. https://doi.org/10.7326/0003-­4819-­136-­3-­ 200202050-­00012. Aeschbach, Vanessa M., Johannes C.  Fendel, Stefan Schmidt, and Anja S.  Göritz. 2021. A tailored mindfulness-based program for resident physicians: A qualitative study. Complementary Therapies in Clinical Practice: 43. https://doi.org/10.1016/j.ctcp.2021.101333. Baumann-Hölzle, Ruth, and Regula Gasser. 2016. Ethik und Spiritual Care in Sorgeorganisationen. Integrative Verantwortungsethik, persönliche Sinnfindung und Teamentwicklung. Die Hospiz-­ Zeitschrift 18: 22–27. Bellot, Jennifer. 2011. Defining and assessing organizational culture. Nursing Forum 46: 29–37. https://doi.org/10.1111/j.1744-­6198.2010.00207.x. Borrell-Carrió, Francesc, Anthony L. Suchman, and Ronald M. Epstein. 2004. The biopsychosocial model 25 years later: Principles, practice, and scientific inquiry. Annals of Family Medicine 2: 576–582. https://doi.org/10.1370/afm.245. Brennan, Peter A., and Mike Davidson. 2019. Improving patient safety: We need to reduce hierarchy and empower junior doctors to speak up. British Medical Journal (Clinical Research Edition) 366: l4461. https://doi.org/10.1136/bmj.l4461. Bürgi, Dorothee, and Eckhard Frick. 2017. Spiritual care. In Lehrbuch palliative care, ed. Barbara Steffen-Bürgi, Erika Schärer-Santschi, Diana Staudacher, and Settimio Monteverde 3rd, 522–529. Bern: Hogrefe. Casarez, Rebecca L.  Polzer, and Joan C.  Engebretson. 2012. Ethical issues of incorporating spiritual care into clinical practice. Journal of Clinical Nursing 21: 2099–2107. https://doi. org/10.1111/j.1365-­2702.2012.04168.x. Cleary, Michelle, Rachel Kornhaber, Deependra K. Thapa, Sancia West, and Denis Visentin. 2018. The effectiveness of interventions to improve resilience among health professionals: A systematic review. Nurse Education Today 71: 247–263. https://doi.org/10.1016/j.nedt.2018.10.002. Cole, Thomas R., and Nathan Carlin. 2009. The suffering of physicians. The Lancet 374: 1414–1415. https://doi.org/10.1016/S0140-­6736(09)61851-­1. Cook, Rebecca J., and Bernard M. Dickens. 2006. The growing abuse of conscientious objection. The Virtual Mentor 8: 337–340. https://doi.org/10.1001/virtualmentor.2006.8.5.oped1-­0605. Cummins, Paul J. 2019. Conscientious objection and physician-employees. HEC Forum Advance Online Publication. https://doi.org/10.1007/s10730-­019-­09390-­8. Dinges, Stefan. 2016. Spiritualität und Spiritual Care – Modebegriff oder Paradigmen ganzheitlicher Gesundheitsversorgung? In Menschenrechte und Medizin: Grundfragen der medizinischen Ethik, ed. Marco Bonacker and Gunter Geiger, 77–101. Opladen: Verlag Barbara Budrich. Engel, George L. 1977. The need for a new medical model: A challenge for biomedicine. Science 196: 129–136. https://doi.org/10.1126/science.847460. Engster, Daniel. 2005. Rethinking care theory: The practice of caring and the obligation to care. Hypatia 20: 50–74.

4  Why Me? – The Concept of Physicians’ Spiritual Self-Care: A Contribution…

69

Fang, Chun-Kai, P.Y. Li, Lai Ming-Liang, M.H. Lin, Douglas T. Bridge, and H.W. Chen. 2011. Establishing a ‘Physician’s spiritual well-being scale’ and testing its reliability and validity. Journal of Medical Ethics 37: 6–12. https://doi.org/10.1136/jme.2010.037200. Figley, Charles R. 1995. Compassion fatigue as secondary traumatic stress disorder: An overview. In Brunner/Mazel psychosocial stress series: Vol. 23. Compassion fatigue. Coping with secondary traumatic stress disorder in those who treat the traumatized, ed. Charles R. Figley, 1–20. New York: Taylor & Francis Routledge. Fowler, John. 2017. From staff nurse to nurse consultant. British Journal of Nursing 26: 478. https://doi.org/10.12968/bjon.2017.26.8.478. Frick, Eckhard. 2009. Spiritual care  – ein neues Fachgebiet der Medizin. Zeitschrift Für Medizinische Ethik 55: 145–155. ———. 2015. Was kostet Spiritual Care? Stimmen Der Zeit 140: 73–74. Gamondi, Claudia, Philip Larkin, and Sheila Payne. 2013. Core competencies in palliative care: An EAPC White Paper on Palliative Care Education – Part 2. European Journal of Palliative Care 20: 140–145. Gélinas, Céline, Lise Fillion, Marie-Anik Robitaille, and Manon Truchon. 2012. Stressors experienced by nurses providing end-of-life palliative care in the intensive care unit. Canadian Journal of Nursing Research 44: 18–39. Gijsberts, Marie-José H.E., Anke I. Liefbroer, René Otten, and Erik Olsman. 2019. Spiritual care in palliative care: A systematic review of the recent European literature. Medical Sciences (Basel) 7. https://doi.org/10.3390/medsci7020025. Glasberg, Ann-Louise, Astrid Norberg, and Anna Söderberg. 2007. Sources of burnout among healthcare employees as perceived by managers. Journal of Advanced Nursing 60: 10–19. https://doi.org/10.1111/j.1365-­2648.2007.04370.x. Gordon, Tom, and David Mitchell. 2004. A competency model for the assessment and delivery of spiritual care. Palliative Medicine 18: 646–651. https://doi.org/10.1191/ 0269216304pm936oa. Graber, David R., and James A. Johnson. 2001. Spirituality and healthcare organizations. Journal of Healthcare Management 46: 39–52. https://doi.org/10.1097/00115514-­200101000-­00008. Gratz, Margit, and Traugott Roser. 2014. Spiritualität in der Medizin  – ein Widerspruch? In Basiswissen Palliativmedizin, ed. Martin W. Schnell and Christian Schulz, 233–240. Berlin/ Heidelberg: Springer. Heller, Birgit. 2017. Bedeutung religiös-kultureller Unterschiede in Palliative Care. In Lehrbuch palliative care, ed. Barbara Steffen-Bürgi, Erika Schärer-Santschi, Diana Staudacher, and Settimio Monteverde 3rd, 510–517. Bern: Hogrefe. Helo, Yousef. 2017. Schulungen in Spiritual Care  – eine systematische Übersichtsarbeit. Dissertation an der Medizinischen Fakultät der Ludwig-Maximilians-Universität München. https://edoc.ub.uni-­muenchen.de/20976/1/Helo_Yousef.pdf. Accessed 13 Feb 2020. International Council of Nurses. 2012. The ICN code of ethics for nurses. https://www.icn.ch/ sites/default/files/inline-­files/2012_ICN_Codeofethicsfornurses_%20eng.pdf. Accessed 13 Feb 2020. Jung-Borutta, Christine, and Thomas Sitte. 2016. Spiritual care. In Matthias Thöns and Thomas Sitte, ed. Repetitorium Palliativmedizin, 209–224. Berlin/Heidelberg: Springer. Kincheloe, Donna D., Lois M. Stallings Welden, and Ann White. 2018. A spiritual care toolkit: An evidence-based solution to meet spiritual needs. Journal of Clinical Nursing 27: 1612–1620. https://doi.org/10.1111/jocn.14265. Kvarnström, Susanne. 2008. Difficulties in collaboration: A critical incident study of interprofessional healthcare teamwork. Journal of Interprofessional Care 22: 191–203. https://doi. org/10.1080/13561820701760600. Laor-Maayany, Rony, Gil Goldzweig, Ilanit Hasson-Ohayon, Gil Bar-Sela, Adi Engler-Gross, and Michal Braun. 2019. Compassion fatigue among oncologists: The role of grief, sense of failure, and exposure to suffering and death. Supportive Care in Cancer Advance Online Publication. https://doi.org/10.1007/s00520-­019-­05009-­3.

70

E. Kuhn

Lichter, David A. 2019. Spiritual care in palliative care. In Palliative care and catholic health care, ed. Peter J.  Cataldo and Dan O’Brien, vol. 130, 89–107. Cham: Springer. https://doi. org/10.1007/978-­3-­030-­05005-­4_7. Lombardo, Barbara, and Caryl Eyre. 2011. Compassion fatigue: A nurse’s primer. Online Journal of Issues in Nursing 16: 3. https://doi.org/10.3912/OJIN.Vol16No01Man03. Magelssen, Morten. 2012. When should conscientious objection be accepted? Journal of Medical Ethics 38: 18–21. https://doi.org/10.1136/jme.2011.043646. Marcum, James A. 2012. The virtuous physician. The role of virtue in medicine. Philosophy and medicine, Vol. 114. Dordrecht: Springer. Martin, Joanne. 2014. Organizational culture. In Wiley encyclopedia of management, ed. Cary L.  Cooper, vol. 15, 1–7. Hoboken: Wiley. https://doi.org/10.1002/9781118785317. weom110198. Mathwig, Frank. 2014. Worum sorgt sich Spiritual Care? Bemerkungen und Anfragen aus theologisch-­ethischer Sicht. In Palliative und Spiritual Care. Aktuelle Perspektiven in Medizin und Theologie, ed. Isabelle Noth and Claudia Kohli Reichenbach, 23–41. Zürich: Theologischer Verlag Zürich. National Coalition for Hospice and Palliative Care. 2018. Clinical practice guidelines for quality Palliative care. https://www.nationalcoalitionhpc.org/wp-­content/uploads/2018/10/NCHPC-­ NCPGuidelines_4thED_web_FINAL.pdf. Accessed 13 Feb 2020. Nolan, Steve, Philip Saltmarsh, and Carlo Leget. 2011. Spiritual care in palliative care: Working towards an EAPC Task Force. European Journal of Palliative Care 18: 86–89. Orellana-Rios, Claudia L., Lukas Radbruch, Martina Kern, Yesche U.  Regel, Andreas Anton, Shane Sinclair, and Stefan Schmidt. 2017. Mindfulness and compassion-oriented practices at work reduce distress and enhance self-care of Palliative care teams: A mixed-method evaluation of an “on the job” program. BMC Palliative Care 17. https://doi.org/10.1186/ s12904-­017-­0219-­7. Paal, Piret, Traugott Roser, and Eckhard Frick. 2014. Developments in spiritual care education in German-speaking countries. BMC Medical Education 14: 112–118. https://doi.org/10.1186/ 1472-­6920-­14-­112 Penderell, Adrienne, and Kevin Brazil. 2010. The spirit of palliative practice: A qualitative inquiry into the spiritual journey of palliative care physicians. Palliative & Supportive Care 8: 415–420. https://doi.org/10.1017/S1478951510000271. Peng-Keller, Simon. 2017. Ansätze ärztlicher spiritual care. Praxis 106: 1339–1343. Perez, Giselle K., Vivian Haime, Vicki Jackson, Eva Chittenden, Darshan H. Mehta, and Elyse R. Park. 2015. Promoting resiliency among Palliative care clinicians: Stressors, coping strategies, and training needs. Journal of Palliative Medicine 18: 332–337. https://doi.org/10.1089/ jpm.2014.0221. Pilkington, Bryan C. 2019. Patients, practitioners, and conscience: Why religion should not divide. Ethics, Medicine and Public Health 11: 30–35. https://doi.org/10.1016/j.jemep.2019.100419. Post, Stephen G., Christina M.  Puchalski, and David B.  Larson. 2000. Physicians and patient spirituality: Professional boundaries, competency, and ethics. Annals of Internal Medicine 132: 578–583. https://doi.org/10.7326/0003-­4819-­132-­7-­200004040-­00010. Puchalski, Christina, Betty Ferrell, Rose Virani, Shirley Otis-Green, Pamela Baird, Janet Bull, Harvey Chochinov, et  al. 2009. Improving the quality of spiritual care as a dimension of Palliative care: The report of the Consensus Conference. Journal of Palliative Medicine 12: 885–904. https://doi.org/10.1089/jpm.2009.0142. Riedner, Carola, and Thomas Hagen. 2011. Spirituelle Anamnese. In Spiritualität und Medizin. Gemeinsame Sorge für den kranken Menschen, ed. Eckhard Frick and Traugott Roser, 2nd ed., 234–241. Stuttgart: Kohlhammer. Sanchez-Reilly, Sandra, Laura J. Morrison, Elise Carey, Rachelle Bernacki, Lynn O’Neill, Jennifer Kapo, Vyjeyanthi S. Periyakoil, and Jane deLima Thomas. 2013. Caring for oneself to care for others: Physicians and their self-care. The Journal of Supportive Oncology 11: 75–81. https:// doi.org/10.12788/j.suponc.0003.

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Sansó, Noemí, Laura Galiana, Amparo Oliver, Antonio Pascual, Shane Sinclair, and Enric Benito. 2015. Palliative care professionals’ inner life: Exploring the relationships among awareness, self-care, and compassion satisfaction and fatigue, burnout, and coping with death. Journal of Pain and Symptom Management 50: 200–207. https://doi.org/10.1016/j. jpainsymman.2015.02.013. Schuklenk, Udo, and Ricardo Smalling. 2017. Why medical professionals have no moral claim to conscientious objection accommodation in liberal democracies. Journal of Medical Ethics 43: 234–240. https://doi.org/10.1136/medethics-­2016-­103560. Sikora, Andrew, and Alana R. Fleischman. 1999. Physician participation in capital punishment: A question of professional integrity. Journal of Urban Health 76: 400–408. https://doi. org/10.1007/BF02351498. Spranzi, Marta. 2019. Integrity: Professional. In Encyclopedia of global bioethics, ed. Henk ten Have, vol. 16, 1–9. Cham: Springer International Publishing. https://doi.org/10.1007/978-­3-­319-­ 05544-­2_252-­1. Stolberg, Michael. 2017. A history of palliative care, 1500–1970. Vol. 123. Cham: Springer. https://doi.org/10.1007/978-­3-­319-­54178-­5. Sulmasy, Daniel P. 2012. Ethical principles for spiritual care. In Oxford textbook of spirituality in healthcare, ed. Mark R. Cobb, Christina M. Puchalski, and Bruce Rumbold, 465–470. Oxford: Oxford University Press. https://doi.org/10.1093/med/9780199571390.003.0062. ———. 2017. Tolerance, professional judgment, and the discretionary space of the physician. Cambridge Quarterly of Healthcare Ethics 26: 18–31. https://doi.org/10.1017/ S0963180116000621. Tronto, Joan C. 1993. Moral boundaries. A political argument for an ethic of care. New York/ London: Routledge. Wasner, Maria, Christine Longaker, Martin J. Fegg, and Gian D. Borasio. 2005. Effects of spiritual care training for Palliative care professionals. Palliative Medicine 19: 99–104. https://doi.org/ 10.1191/0269216305pm995oa. WCPT. 2017. Ethical responsibilities of physical therapists and WCPT members. World Confederation for Physical Therapy. https://www.wcpt.org/sites/wcpt.org/files/files/resources/ policies/2017/PS_Ethical_responsibilities_of_physical_therapists_and_WCPT_members_ FINAL.pdf. Accessed 13 Feb 2020. Weiner, Eric L., Geoffrey R. Swain, Barbara Wolf, and Mark Gottlieb. 2001. A qualitative study of physicians’ own wellness-promotion practices. The Western Journal of Medicine 174: 19–23. https://doi.org/10.1136/ewjm.174.1.19. WHO. 2002. WHO definition of Palliative care. World Health Organization. http://www.who.int/ cancer/palliative/definition/en/. Accessed 13 Feb 2020. Wicclair, Mark R. 2019. Conscientious objection, moral integrity, and professional obligations. Perspectives in Biology and Medicine 62: 543–559. https://doi.org/10.1353/pbm.2019.0032. Winslow, Gerald R., and Betty J.  Wehtje-Winslow. 2007. Ethical boundaries of spiritual care. Medical Journal of Australia 186: 63–66. WMA. 2006. WMA international code of medical ethics. World Medical Association. https://www. wma.net/policies-­post/wma-­international-­code-­of-­medical-­ethics/. Accessed 13 Feb 2020. ———. 2017. WMA Declaration of Geneva, amended by the 68th WMA General Assembly. Chicago, World Medical Association. https://www.wma.net/policies-­post/wma-­declaration-­of-­ geneva/. Accessed 13 Feb 2020. Yates, Scott W. 2020. Physician stress and burnout. The American Journal of Medicine 133: 160–164. https://doi.org/10.1016/j.amjmed.2019.08.034.

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Eva Kuhn  is affiliated with the Section Global Health (IHPH) at the University Hospital Bonn. Eva has an academic background in Catholic theology and law. Her main fields of research are digital (mental) health ethics, healthy work for health-care workers including professional ethics and occupational health ethics. She is certified as a Healthcare Ethics Counselor and particularly dedicated to practice-­oriented academic teaching.

Part II

Professional Standards at the End of Life

Chapter 5

The Role of Time in End-of-Life Decision-­Making at the Intensive Care Unit in France and Germany: Qualitative-­Empirical Data and Ethical Reflection Anna-Henrikje Seidlein, Sabine Salloch, and Marta Spranzi

5.1  Background Political and societal debates on end-of-life (EOL) care and the delivery of such care are shaped to a large extent by cultural and other contextual factors, such as religion, legal norms and health-care systems in individual countries. Ethical questions are also not only inherent in EOL practices but also emerge due to these cultural conditions and contain potential for controversies. Such ethical controversies regarding EOL practices include debates on assisted suicide and euthanasia. It is an open question whether such differences also concern “everyday” questions and decisions on the care and treatment of critically ill and dying patients, as they occur especially at intensive care units (ICUs). A closer consideration of France and Germany regarding such ethical questions in connection with professional practices at the EOL is particularly valuable, because the framework for decision-making, respectively, the legal regulations of these two European countries, differ. Two

A.-H. Seidlein (*) Institute of Ethics and History of Medicine, University Medicine Greifswald, Greifswald, Germany e-mail: [email protected] S. Salloch Institute of Ethics, History, and Philosophy of Medicine, Hannover Medical School, Hanover, Germany e-mail: [email protected] M. Spranzi Université de Versailles Saint-Quentin-en-Yvelines, Versailles, France Center for Clinical Ethics, Paris, France e-mail: [email protected] © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_5

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regulatory developments can be considered as paradigmatic here: firstly, the legal right to Palliative care developed earlier in Germany than in France (Van Beek et al. 2013). This results, for example, in palliative medicine taking a different position in France than in Germany, where it is, according to Horn, still perceived more as a “last option” (Horn 2013). Secondly, the national legal regulations on Advance Directives (ADs) and withdrawing (WD) and withholding (WH) of treatment that will be described in more detail for each country below.

5.1.1  The French Framework for EOL Decision-Making In France, the “end-of life law” which came in to force in 2005 (n° 2005–370, April 22nd, 2005) explicitly authorized WD and WH of treatment, thereby implicitly affirming the distinction between active euthanasia and practices of WD and WH treatment. According to the law, WD and WH are legal if the following criteria are met: a) treatment constitutes “unreasonable obstinacy”,1 b) the decision is preceded by a “collegial procedure”, and c) a competent patient has given his/her consent or (when this is impossible), the proxy or family members have been consulted (although they do not decide as the decision is a “medical decision”). The law was revised in February 2016.2 Since then, the French legislation has also stressed the binding nature of ADs. Furthermore, the revised law “Claeys-Leonetti” introduced a right to deep and continuous sedation (Horn 2018). It can be requested by the patient (and must be applied by a doctor) under certain conditions: either when a patient whose death is foreseeable in the short term requests it, or when WD or WH of treatment make death inevitable in the near future and may cause the patient suffering. The provision is very controversial and has caused several restrictive interpretations and implementation rules, most notably by the Haute Autorité de Santé (HAS). The HAS recommendations interpret the expression “short term”, as meaning that the patient’s death is foreseen “within a few hours to a few days”3 (Haute Autorité de Santé 2018, 12). The ethics commission of the French Intensive Care Society (Société de Réanimation de Langue Française, SRLF) also warns “that one should not prescribe deep sedation to all patients at the EOL. Rather, care should be taken to relieving pain and moral suffering (…) even though this entails that the patient loses consciousness or leads to anticipated death” (SRLF Commission d’éthique 2015). It also points to the fact that a peaceful death may also be pursued while the patient remains conscious as long as possible. End of life decisions are to 1  The French concept of “unreasonable obstinacy” indicates that therapies have been continued beyond what may be considered as reasonable. It is the functional equivalent of the expression “futile treatment”. For an interesting analysis of the difference between the two terms, see Fournier (2017). 2  Law n° 2016-87 of 2 February 2016. (https://www.legifrance.gouv.fr/affichTexte.do?cidTexte=J ORFTEXT000031970253&categorieLien=id. Accessed 17 February 2020). 3  Translation by authors.

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be discussed in a collegial consultation process (“procédure collégiale”) with the involvement of several physicians, nurses and other healthcare professionals. The law sets procedural constraints by defining who has to attend the meeting that must also include an external consultant. This “collegial meeting” ought to address the WD and WH of treatment as well as deep and continuous sedation in a deliberative manner. The same law of 2016 obliges doctors to follow patients’ ADs except in the case of a medical emergency or when they are “manifestly inappropriate”.4

5.1.2  The German Framework for EOL Decision-Making In Germany, ADs were implemented in guardianship law in 2009. Since then, a valid AD has been legally binding for physicians and the entire medical team. Nonetheless, in practice, physicians complain that ADs are often not applicable to the intensive care context and are, thus, not helpful (Leder et al. 2015). The variance with respect to EOL practices is great: whereas for some physicians, treatment limitation is still not considered as an option due to the fear of legal action (Jox et al. 2010), for others treatment, limitation with intended shortening of life is considered as part of their professional practice (Dahmen et  al. 2017). The WH and WD (German term “passive Sterbehilfe” or “Sterbenlassen”) are permitted in Germany if either a) the competent patient, who is able to consent, expresses this wish or b) it is in accordance with the patients’ prior written AD (§1901a German Civil Code) or verbally expressed will in the case of his/her current inability to consent. In such a case of decisional incapacity, the patient’s will is supported through a legal representative (§1901a,b German Civil Code) who is a surrogate decision maker. The latter can be chosen in advance by the patient and designated in his/her power of attorney (§1901c German Civil Code) or he/she will be appointed by the court. The Federal Supreme Court has clarified in its judgments in 2016 (XII ZB 61/16), 2017 (XII ZB 604/15) and 2018 (XII ZB 107/18) that in order for an AD to be valid and binding, it must be sufficiently specific. It must, therefore, contain concrete statements on consent or refusal in medical procedures and treatment options. According to the Federal Supreme Court, statements such as “I do not wish life-sustaining treatment” are not adequate and require clarification. The precondition of necessary concretization of an AD can be achieved through designating certain medical treatment options (e.g. “I wish/do not wish percutaneous endoscopic gastrostomy”) or by referring to sufficiently specified diseases or treatment situations (e.g. “In case of Dementia with a severe loss of memory, I do not wish percutaneous endoscopic gastrostomy”). The necessary concretization can, however, be made in individual cases by designating certain medical measures and by referring to sufficiently specified diseases or treatment situations. Many ADs do not fulfil this prerequisite (Alonso et al. 2017; Langer et al. 2016).

 Art. L. 1111-11 of n° 2016-87 of 2 February 2016.

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Another ethically discussed type of action at the EOL is so-called “indirect euthanasia” (German term “indirekte Sterbehilfe”). It refers, for example, to treating severe shortness of breath with opiates, such as morphine, which bears the risk of ending the patient’s life prematurely. This is usually considered as permissible if the intention of the treatment is to alleviate unbearable symptoms and, thus, improve the patient’s quality of life and relieve suffering. In this case, the preterm death is accepted as a side effect. Continuous Deep Sedation, sometimes also called “palliative sedation” or “terminal sedation”, at the EOL remains a controversial borderline case that is, however, a legal treatment option.

5.1.3  EOL Practices in the ICU Although some comparative overviews of ethical and legal issues at the EOL already exist regarding selected countries in the European Union (Jox et al. 2013), there is no explicit comparison between France and Germany on the specific topic of EOL practices in the ICU. The landmark ETHICUS study in 2003 (Sprung et al. 2003) was the first to offer comprehensive data on EOL practices in European ICUs. German ICUs were included in the sample, but the study does not provide data from France. ETHICUS I reported that life-sustaining therapies have been limited in 72.6% of the study population and in 76% of those who died. The study group repeated their survey in 2015/2016 to document changes in European EOL practices. The ETHICUS II study showed that there is a significant increase of decisions to limit life-prolonging therapies (Sprung et al. 2019). Concerning France, the LATAREA 2 study, published in 2008, offers some data on the WD of treatment and mortality. Of the 65 ICUs included, 55.7% of all deaths occurred after a decision to WD or WH treatment (Ferrand et al. 2008). This was, however, prior to the enactment of the Leonetti law. In addition, a study of Lesieur et al. (2015) provides information on the prevalence of the WH and WD of treatment in France after the “Claeys-Leonetti” law came into force. The authors report that more than half of the deaths of the participants enrolled in the study occurred after a decision to WH or WD treatment(s) (Lesieur et  al. 2015). Evidence from qualitative research in other countries, however, shows that despite attitudes shaped by national laws and practices, the care of seriously ill and dying people sometimes differs significantly according to individual cultural and personal differences (Schweda et al. 2017). This can be seen, for example, in the different ways of treating WH and WD of treatment as reported in various empirical studies across Europe and the United States and in national studies in France and Germany. Therefore, there is a need for a more fine-grained and thematic approach to practices of EOL care.

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5.1.4  T  he Issue of Time in EOL Decision-Making in the ICU: A Comparative Perspective Despite the fact that many challenges of decision-making processes in intensive care are met by the standardization of procedures and algorithms, for example, cardiopulmonary resuscitation or Sepsis Bundles (Jozwiak et al. 2016), difficult ethical issues arise in the context of EOL decision-making. More particularly, issues relating to time often appear prominently. Temporal aspects, however, can hardly be standardized, particularly in situations where clear evidence for interventions is missing and prognostic uncertainty exists. Here, ethical challenges arise, for example, when decisions have to be made concerning the goals of therapy and the respective continuation or limitation of therapies in the light of prognostic uncertainty. Disagreement can arise as to the appropriate time point for such a decision or about the length of the observation period for the improvement or deterioration of the patient in the team, especially between nurses and physicians (Hartog and Benbenishty 2015) or between the physicians and the patients’ family (Mehter et al. 2018). Such conflicts are also fostered by different perceptions of one’s role as a health-care professional. Pecanac and Schwarze (2018), for example, found that nurses tend to perceive themselves as the patient’s advocate with the mandate to strengthen the well-being of patients and to act on their behalf, whereas physicians see their main responsibility as keeping the patient alive for as long as possible. Time and temporality are omnipresent in ordinary life experience and appear to be self-evident. The nature of time, its meaning and its influence on daily practices in intensive care medicine, however, are scarcely reflected upon. Furthermore, the experience of time is connected with strong and very important emotions among all those who are concerned by EOL decisions. This is especially important since ICUs are highly stressful environments not only for staff and patients but also for family members. Emotions related to the passing of time and to the timing of death have a great impact in intensive care: relatives and patients often experience emotions directed to the future, such as hope and fear. Relatives, furthermore, might experience emotions directed to the past, such as remorse, regret or shame concerning past actions. These emotions might have an impact on the decisions they have to make as proxies. Professionals are confronted with emotions concerning the present time, such as uncertainty and fear regarding the further course of action (Kozlowski et al. 2017). In addition, the effects of a stay at the ICU and coping, for example, with the experience of a life-threatening illness (patients) or the experience of the death of a loved one (relatives) are directly linked to time and associated emotions. Concerning the professionals, these emotions also play a role regarding their remaining in the profession or leaving it prematurely. The aim of this contribution is to further illuminate the role of time in EOL decision-making in German and French ICUs and to analyse similarities and differences regarding the way that issues related to time play out in the decisions. Consequently, some elements drawn from a French and a German qualitative study in ICUs are introduced and then discussed comparatively.

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5.2  The Issue of Time in ICU Decision-Making in France 5.2.1  Design and Methods Practices of WD and WH life support and non-life support treatments in the ICU present a high degree of individual variation irrespective of the patient’s medical situation. While these differences are acknowledged in the literature, they are often referred to as “biases” to be corrected (Asch and Christakis 1996; Christakis and Asch 1993; Sprung et al. 2015; van Beinum et al. 2015). The Clinical Ethics Center in Paris5 has initiated a qualitative clinical ethics empirical study to explore the reasons why individual physicians perceive several WD and WH practices differently, both individually and regarding the distinction between WD and WH practices,6: “Withdrawing and withholding treatments in ICUs: physicians’ perceptions”. It was implemented in five ICU departments within the large AP-HP hospital system in Paris. The basic presupposition underlying the study was that moral perceptions of concerned people matter in order to evaluate practices and issue recommendations. The investigation consisted of conducting semi-structured interviews with eight physicians working in each of five ICU departments – four junior doctors (residents and fellows) and four senior doctors (professors or attending physicians, hospitalists) – giving a total of 40 doctors. The interview guide included questions about WH and WD decisions that were perceived as difficult, whether WH or WD was more taxing and why, and this regarding either the state of patient (conscious or sedated) or which specific treatment (e.g. dialysis, CPR, antibiotics) was withheld or withdrawn. When the ICU department was divided into two units (surgical and medical), an equal number of physicians were interviewed in each of them, in order to account for surgical or medical education variations. Participants were included on a voluntary basis after the project was presented to the team or following the department head’s suggestion as to who would be interested.7 The sampling was partially based on convenience and availability and partially theoretical, insofar as two variables were systematically taken into account based on a preliminary literature search: years of experience and type of medical education (surgical and medical speciality). A Grounded Theory approach was chosen in order to let hypotheses and new themes emerge during the interview process. Interviews were conducted from May 2017 to March 2019. Interview transcripts are in the process of being thematically analysed and will be presented in the fall of, 2021 first to the medical teams participating in the study and then to a venue yet to be determined. For the

5  Marta Spranzi conducted the study as the principal investigator, with two of the Center’s doctors, Véronique Fournier and Nicolas Fouteur. 6  Whereas the “equivalence thesis” for WD and WH is widely considered as ethically justified, there is empirical evidence that doctors perceive WD as more morally problematic than WH. The empirical study is also meant to explore doctors’ preferences and, above all, their reasons for them. 7  Approval from an institutional review board committee is not required in France if interviews do not involve patients.

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purpose of the current paper, only a selected number of statements, those concerned with the role of time in ICU decision-making will be explored. The partial results reported here are not intended to be quantitatively significant but only to illustrate the specific theme of time that has emerged as important in several interviews.

5.2.2  Results 5.2.2.1  D  etermining the “Good Time” for a Decision to WD and/or WH Treatment in the ICU Contrary to what might have been expected given the emphasis on the relative difficulty for doctors to implement different EOL “actions” in the ethical literature, results point to the fact that the more taxing process is reaching a decision to WH and/or WD (WH and WD in French: “LAT”, “Limitation et arrêt de traitement”) rather than carrying it out in practice. This is so despite the fact that the implementation itself has to be planned for in a detailed way and deserves careful attention and many micro-decisions. As a doctor says: The technical side of WH & WD is nothing, anybody can do it. The difficulty is in deciding it, to get to the point where you can envisage it: at which moment you go ahead. (S-C-S-2)

Reaching such a decision is all the trickier when one of the main provisions of the French EOL law concerns the obligation to hold a formal collegial meeting in order to deliberate about any WD or WH decision. Consequently, those decisions cannot be made unless a team consensus has been reached. Every time that we disagree, the decision is delayed. As weeks go by, consensus becomes global; some are more precocious than others, but they do not impose their decision. S(M)-S-1

In this context, finding a good time to reverse course after aggressive treatment often means finding a compromise between stopping too early and, thereby, depriving the patient of a chance to improve, and stopping too late and, thereby, submitting him/her to unnecessary and potentially painful treatments. Some say that withdrawing treatment is like a cut-off point that falls between life and death. I do not think so; what I find difficult is when we continue beyond what is useful for the patient. (A-J-2)

Indeed, many doctors classify themselves as either “terminators” or “pro-life”, according to whether they have a tendency to stop treatment sooner or later. They attribute such personal differences to questions of personality, personal history and values, and only to a minor extent to professional experience. Interviewee: In our teams, we have the pro-life and the terminators, and it’s very good that it is so! And that we can discuss. Interviewer: What do [these different attitudes] depend on? Interviewee: On their personal life, what they have gone through, their attitude towards uncertainty and their ability to form a conviction. (B-CdS)

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And on the opposite side: Interviewee: I am ‘a diehard’ but within the limits of reasonable treatments. Interviewer: Why so? Interviewee: Because I am an atheist, I don’t believe in anything and when medical power decides to stop treatment or not, you really have to be sure, because we only have one life. (S(M)-S-1)

Several other factors may delay the decision by making it more difficult to reach a consensus about WD and/or WH decisions. Firstly, there are cases when patients were getting better and there was a sudden complication, rather than when the clinical situation has worsened quickly. Indeed, the “reversing process” is starker in these cases, and the resuscitation instinct is more difficult to counter. WH and WD has been more difficult for those two patients, because they had been almost discharged. There has been a sudden complication. On the contrary, if their condition worsens very quickly after admission we suggest a limitation more quickly. It is more gratifying for an intensive care doctor to make a patient get out of the ICU; the first reaction is to say: “Let’s re-intubate him!”. (S(M)-J-2)

It is also more difficult to arrive at a WH and WD decision when patients are transferred the ICU after having had surgery. Surgeons, intensivists often state, tend not to want to let go: they are attached to their patients: Furthermore, there are surgeons and they do not want to stop: they have a strong relationship to the patient and not only to the family. They feel responsible or even guilty. (B-CdS)

Or when patients are young and one gets attached to them: There are cases where we have waited too long. The younger they are, the harder, and it is stretched out for months. Which end of life have we offered him? It is horrible when it slides along, and loved ones suffer too. (S-C-J-1)

5.2.2.2  “ Modulating” the Timing of Death: Is delaying or Accelerating Acceptable at the Request of Family Members? The ICU physicians are sometimes faced with family members’ requests to delay or accelerate the timing of death once the decision to WD and/or WH treatment has been made and has been mutually accepted. Loved ones may be either exhausted by a prolonged dying process or, on the contrary, may wish for death to be delayed in order to allow other family members to be present. Again, doctors disagree on the ethical acceptability of these requests: some find either delaying or accelerating equally acceptable and others both unacceptable. Others still find only delaying but not accelerating acceptable.

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Those who accept delaying the timing of death put family members’ well-being on a par with the patient’s and consider that once the patient is not suffering, it is important to act in such a way as to maximize the chances that the dying process will occur according the relatives’ expectations. Indeed, they consider that  one’s duty as a doctor includes minimizing relatives’ grief. I did not find it shocking to wait, and it could help this lady who had to face her husband’s death alone (..). I felt empathic towards her; that fact of being able to grief in a certain way must be respected. (A-J-4)

Similar arguments are used to assess family members’ requests to accelerate the timing of death: I have never received such a request, but I would not find it too shocking to increase the dosage, because if the family is prepared and it has to happen, an hour less makes no difference. We do it for the family’s sake, and it is part of patient’s care. (A-J-4)

Arguments for refusing to modulate the timing of death, by either delaying or accelerating the process, usually appeal to one’s professional duty. One important argument against delaying the timing of death appeals to the overarching duty to avoid causing the patient unnecessary suffering as well as refrain from administering futile care. From the patient’s point of view, we don’t know whether she suffers even though she is asleep, and, moreover, it is bodily integrity [that is violated], when we don’t have any curative strategy. (A-J-2) Yes, we know that treatment is futile, and that the law forbids it. But if a family has a son in Australia, it raises difficult discussions. Some say: we are going to care for a body for three days. It is not always easy. (S(C) CdS)

This is all the more stringent that some doctors believe that taking care of family needs does not belong to their professional duties: at most, one should suggest that relatives see a psychologist. Are we privileging family members’ psychological comfort? We plan death only for the family’s sake: I am uneasy about it. (A-J-2)

Other doctors use a different argument to justify their refusal to modulate the timing of death: they appeal to the natural process of death and the overarching principle against tinkering with death. When I extubate a patient I return her to her natural state. If she is not uncomfortable, I don’t sedate her, even if the family is uncomfortable. And anyway, she is going to die quickly, so reducing the dying time by a few hours does not change anything. Sometimes, some patients take a few days to die peacefully. In these cases, if the family asks to accelerate, I tell them: “Please, go ahead”. And sometimes they even survive! (B-S-1)

This last argument may be so important that even some doctors who accept delaying the timing of death may be unwilling to accelerate it, for example, by increasing pain medication doses beyond those that are necessary for relieving the patient’s suffering, because of what would mean in terms of bringing about death.

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5.2.2.3  T  erminal Weaning or Terminal Extubation: How Long Does It Take for the Patient to Die? Although deciding about WH and WD is usually seen as more difficult than implementing the decision through different actions, the practices of terminal weaning or “terminal extubation” are widely considered as morally different. Although in some contexts it is agreed that family wishes in this respect should be taken into account, most doctors have their own preference. The main difference between the two EOL actions is related to the length of time it takes for the patient to die while implementing the withdrawal decision. Arguments from each side of the issue are brought up. Some doctors prefer that death arrives quickly. It is harder to wean the patient and wait; it is easier when it is quicker; even though it is more striking, I find it neater. We act upon a decision and it does not disturb me to go all the way. I don’t have the impression of killing the patient, but some nurses do not like it at all, because they find it violent. I find it more natural to watch someone die without tubes. (A-J-4)

Others, on the contrary, find it troubling when death comes too quickly, as is the case with terminal extubation, and prefer death to come more slowly, following an incremental reduction of the oxygen quantity. It is the act that is more difficult to make, because you put the patient in a difficult situation, and it is an act that is going to bring about the end of life rapidly. (C-S-2)

Doctors give two different explanations for preferring a slow death through progressively decreasing the oxygen amount. On the one hand, they anticipate nurses and family members would be shocked by a quick and visible death, including watching the patient gasping after extubation. Concerning terminal weaning, it is easier to communicate about the patient’s death with family members. Indeed, it allows a certain degree of uncertainty. It is always easier to do things in an incremental way and tell family members: “It is possible that our loved one dies soon”. When there is no certainty, it is different than when things are more brutal, when things happen in 10 seconds. (S(M)-J-1)

Secondly, and more importantly, if death occurs too quickly after a medical action (extubation), the impression of “causing” the patient’s death is stronger, even though doctors are aware that this impression is not rationally justified but simply corresponds to a ‘post hoc, propter hoc’ fallacy. I get the impression that I am the cushion that you put on someone’s face. But I am of two minds: one side of me says, “You are not a criminal,” and I do what is best for the patient; but another side of you says: “When she dies within seconds, death is the immediacy of things.” (…) There is the criminal side of causing death that strikes your mind more. I have the impression that all I do is to withdraw the tube and, on the other hand, when I withdraw the tube and she dies right away, I have the impression of not having given her a chance. (S(M)-J-1)

Similar to the timely decision to WH and WD, there a good “timing” for the dying process to unfold:

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We tell ourselves unconsciously that if death occurs right after the act, it can be perceived badly, as inappropriate. And, at the same time, if it occurs after five days, it is too long. Without making it explicit, we consider that an end of life is acceptable if it lasts between one hour and 24 hours. (S(C) CdS)

5.3  The Issue of Time in ICU Decision-Making in Germany 5.3.1  Design and Methods The study uses a triangulation of qualitative research methods which combines non-­ participant observation with qualitative semi-structured interviews.8 The observations took place between December 2017 and March 2018 and were conducted for 20  days (each for 4–6  h) in a surgical ICU of a university hospital in northern Germany. The special focus was on ward rounds, handovers and conversation with relatives during the daytime shifts. The researcher created handwritten field protocols and postscripts after each observation. These observations built the basis for the development of an interview guide to conduct face-to-face interviews. The interview guide contained questions on the framework of treatment decisions (e.g. role distribution between the individuals involved, conflicts, criteria for decisions to WH/WD treatment, role of precautionary documents). Five physicians and five nurses from different sites in the ICU context were interviewed. The convenience sample was composed via snowball sampling contacting gatekeepers via e-mail or personal contact. Ethical approval was obtained from the institutional review board at Greifswald University Medicine. The sample consists of five nurses (three male, two female) and five physicians (three male, two female) with an average age of 37.6  years (nurses; range: 29–58  years) and 42.2  years (physicians; range: 30–57 years), respectively. The professional experience at the ICU on average was 10.8  years (nurses; range: 4.5–27  years) and 11.5  years (physicians; range 3.5–30 years), respectively. Different clinical positions (resident, senior physician, head of department) and qualifications (with and without intensive care specialization) were included.

5.3.2  Results The interviews had a mean duration of 68 min (range 40–90 min) and were conducted between March and May 2018 at the researchers’ office, at the interviewees’ office and in a private setting. The interviews were audio-recorded and transcribed verbatim. 8  The study was conducted by Anna-Henrikje Seidlein and Sabine Salloch together with Andre Nowak and Matthias Gründling.

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Transcripts and field notes were coded deductively (categories from the observations and the interview guide) and inductively (new themes emerging from the data) using the method of qualitative content analysis (Mayring 2014) in MAXQDA12 software. Each interview was coded separately by two researchers. The results were compared and discussed until a shared understanding of the interviews was reached, which was then further discussed at regular multidisciplinary team meetings. The topics presented here in a brief form mirror key results regarding time as a factor in ICU decision-making. They, thus, only form an extract from the broad variety of topics which emerged during the observations and the interviews. 5.3.2.1  Being in Intensive Care for a Long Time This time perspective is of crucial importance for both the patient and the professionals. From the perspective of the ICU staff, caring for a patient becomes increasingly difficult the longer the patient stays on the ward. Caring for patients who are in the ICU for many weeks and months is described as being a particularly stressful working experience. If you have been treating the same patient for over a month and you think that things are not going well or that complications are recurring […] Of course, that’s hard to cope with as there is somehow a certain monotony, that you always do the same thing. Perhaps you give your best but then it still doesn’t move forward. And then you try to have some rotation and see other patients. (Physician)

On the other hand, it is appreciated that patients need time to recover and that physicians need time to be able to gain more prognostic certainty. However, such an additional waiting time can also lead to a deterioration of the patient’s medical status and lower his/her chances to potentially profit from the treatment which is initiated. Thus, a decision cannot always be postponed as much as one would wish “because often there is a primary disease behind it which often partially progresses and catches up with you at some point” (Physician). For nurses, changing the therapeutic goals becomes easier to accept the longer the patient stays on the ward and goes from complication to complication. The need for good interprofessional teams is raised particularly in these contexts. Nurse: A small and familiar team is important. […] a well-mixed team, that means of all ages, nurses with different experiences; regarding the doctors there should be more interprofessional doctors joining to find a decision and to accompany this process. […] I think of pain specialists, Palliative care doctors and the like. Interviewer: It that missing? Nurse: Yes. Interviewer: And how do you recognize this? Nurse: I think this becomes particularly obvious with long-lasting patients where it just does not go forward.

The WD of therapies can become a challenge for teams, as nurses tend to think earlier about changing the therapeutic goals from curative to palliative care. This

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can lead to disagreement about the prognosis regarding survival and/or the quality of life after ICU discharge. The nurses are very down-to-earth or much more down-to-earth than the doctors are. I think most of them just have this idea you are born, you live and then you die sometime. Thus, conflicts with nurses almost exclusively occur if you do too much. I’ve never seen a nurse say that we should have done more or that the patient deserves more therapy. It’s almost always real, to leave the patient in peace. (Physician)

In addition, the time being in intensive care is also linked to the duration of professional practice. It is stressed that knowledge and experience increase with more working time in the ICU. Through experience with similar “cases”, professionals feel more confident in decision-making at the EOL, which – in their eyes – correlates with the way they make their decisions. There’s a difference in knowledge and experience. It depends a lot on what I have seen before and what I haven’t seen yet. And when you start in intensive care, you’ve seen almost nothing. And then you first trust the one who has been there for years and has seen quite a lot of similar patients and tells you what he/she did and what happened then. Or you just had an experience, not with many patients, but with one, that was totally impressive and that still occupies you and you either found it really good and you want to do it the same way or you found it really bad and you definitely don’t want to do it that way. That’s always a lot of experience. (Physician)

5.3.2.2  The Timing of Decision-Making Another topic which was frequently raised in the interviews and documented as a point of discussion in the observations relates to the delay of ICU decision-making due to divergent factors. Decisions, for example, can be delayed because not all parties involved (family members, nurses, physicians) are yet ready to carry out the decision – even if it is known that it is in accordance with the patient’s wishes (previously mentioned or written in the AD). Physician: You can never say it is completely hopeless. Doesn’t work. And, yes that’s sometimes silly for legal reasons. The relatives are those who can finally sue you. You always need to try to find a compromise. […] I rather had it the other way round, that we physicians had to struggle with [the decision to end a therapy] and the relatives said “Come on. Do it.” […] Interviewer: And what happens if the relatives say he didn’t want this and you still see a chance? Physician: Well, usually this means staving off the relatives to the next day and the next day and then we look again and try again. Ultimately it then comes to a withdrawal of therapy.

In some cases, physicians believe that the time is not (yet) right for a WD of therapy. Temporary solutions are then chosen to bridge the waiting time they need to come to a final decision. Such a solution is to establish a “DNR status” (do not resuscitate) for the patient and/or to “freeze” therapy. DNR means that in case of cardiac arrest, we would not perform cardiopulmonary resuscitation. There are other restrictions such as therapy reduction or therapy limitation. Limitation

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A.-H. Seidlein et al. of therapy means to leave everything as it is and if something deteriorates, we will no longer react. We would continue like this, but we would no longer react to new problems by escalating therapy. Or you choose therapy reduction, which means that the patient’s therapy is limited to application of fluids and 21 % oxygen. (Physician)

The choice between the methods is described as depending on the point in time during the treatment process and the personal attitude. Do you want to stop the therapy completely or do you just let it go, so, a freezing? That is very individual. There is nothing right or wrong. Some make a very clear cut with extubation, morphine, and that’s it. Others can’t live with it at all. They let everything go as it is. Others change ventilation to 21 % oxygen, that is their withdrawal. So that is very individual. (Physician)

Another important issue which occurred in the observations and interviews relates to the disagreement about when is the optimal time to initiate discussions about potential EOL issues for the first time with the relatives and the patient (if they are competent). This, for example, relates to situations where the patient is still in a clinically stable situation, but there is a considerable risk that the need for decisions to limit ICU treatment might occur in the near future. Well, if you have a patient where it is likely. So, multimorbidity, difficult surgery, major surgery there I already did it [i.e. raising the topic of treatment limitation] but got into trouble with my superior as I said, for example, he does not want long-term ventilation or resuscitation. Then I got trouble, as he said this was unethical and that we could no longer do the surgery because things can always go badly. If we now perform surgery or anaesthesia and something happens, then we need to resuscitate. (Physician)

It is generally highlighted that meeting the “Kairos”, the best moment for discussion and/or decision-making regarding treatment limitation, is a challenging task in everyday ICU care. The physicians particularly indicate that their job could be well supported if patient preferences had been discussed in advance, so that relatives are informed about the patient’s will and can function as substitute decision-makers. Well, I most like relatives who know exactly what he would have wished in this situation. So that I can get back to them along the lines of: it’s better now. What do you think? Should we go on or not? Certainly, this makes it more easy for me. (Physician) That you make the decision together; that’s still easier than if you have a piece of paper and need to derive something from this. (Physician)

5.4  Discussion We reported results from two studies that focus on aspects of the  time dimension related to decision-making in the ICU. When interpreting the results, it is particularly important to note that the two studies presented here were conducted independently of each other. The contexts for the design, data collection and analysis are, thus, different. From a methodological point of view, it should also be considered that the empirical results of these two studies are not representative of more general practices in each country. Due to the nature of qualitative research, rich

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descriptions can be offered that do not allow for generalization. Furthermore, the results provide only an excerpt of the studies which the authors discussed during the workshop “Professional Ethics at the End of Life” and agreed that it is particularly useful from a cross-country perspective. Regarding both countries, France and Germany, the important ethical question arises in the light of the results whether it is in the patient or the family’s best interests to keep the patient alive. The legal situation, expectations and (self-perceived) obligations of the professionals are in tension with each other and might result in ethical dilemmas for them. While it is a fact that family members do not have the right to demand life-prolonging treatments according to the current legal situation in both France and Germany, this can be contrary to their expectations. Moreover, the professionals’ knowledge of the consequences of intensive therapy for family members, such as anxiety, depression and posttraumatic stress disorder, so-called “post intensive-care syndrome-family” (Petrinec and Martin 2018), gives rise to obligations towards the patients’ relatives. In order to avoid such negative consequences for family members, some professionals also feel obliged to pay more attention to their needs. Whereas there is a limit to taking the needs of the family into account, this answer cannot be found in guidelines. The question, therefore, arises how to respect the well-being of all parties involved in specific cases (e.g. when determining the timing of death) in view of the cost-benefit-ratio and whether professionals consider that taking care of relatives’ future stress is within their own professional duties. We have seen that EOL decisions in French and German ICUs are made on a different legal basis regarding two points. Firstly, decisions in Germany are based on ADs and proxies, whereas in France, they include the medical determination on whether the patient’s treatment can be considered as a form of “unreasonable obstinacy” or not. Secondly, the decision-making process is highly standardized by law (a collegial decision-making process in a multidisciplinary team) in France, whereas it is left to the individual physician to a larger extent in Germany. The differences between the two countries, however, do not seem to affect issues related to the timing of the decisions to WD and WH treatment from the clinical point of view, the time it takes to arrive at the decision and reach an agreement, and the decision to take family members’ well-being into account in modulating the timing of the death process: these remain difficult ethical  issues. Nevertheless, the question arises whether a law as implemented in France can contribute to the reduction of uncertainty or emotional stress for professionals. The French experiences could help clarify whether such a regulation involving a collegial procedure, as it is practiced in France, would be applicable and might also ease the decision-making process in Germany. The results in both studies also show implications for advance care planning (ACP), a process that “enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate” (Rietjens et al. 2017). The concept aims to overcome the shortcomings (e.g. limited applicability of the current situation, unclear phrases) of “ordinary” Ads, which

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have also been brought up again in the two studies reported here. The ACP strives for qualified support and more reliable statements about the patient’s will. Furthermore, ACP is implemented not only at the individual level but also at the system level in order to be effective. In Germany, the growing demand has already been met by a law (§132 g Code of Social Law) for “Health-care planning for the end of life” (German: “Gesundheitliche Versorgungsplanung für die letzte Lebensphase”). This law enacted in 2018 allows ACP to be covered by the statutory health insurance. However, the law applies only to residents living in long-term care facilities and not to other contexts and settings. Thus, it is not beneficial for individuals who live at home. The ACP is not yet incorporated in the law in France, but the results of the present French study show that it would be just as important to establish it in law as it is in Germany, as the problems with ADs exist comparably in both countries. The ACP could further strengthen the commitment to respect the patient’s autonomy and, simultaneously, relieve treating teams from the burden of decision-making when relying only on the collegial procedure. The ACP as a comprehensive process could provide assistance to achieve greater certainty with respect to both: ensuring that ADs correctly document the patient’s wishes for the future and that these wishes are satisified with the decision that has been made. Further research on the public and scientific discourse on ACP in France would be desirable to find nation- and culture-specific solutions of implementing measures for advance decision-making. The remarkable similarities of both studies’ findings necessitate shifting the focus to additional factors which might influence physicians’ behaviour in ICU decision-making. One possible explanation can be found in physicians’ commitment to medical professionalism as a transnational, however rather informal, normative framework. In addition to this, however, the physician’s personal attitude and professional experience emerge as major factors, particularly with respect to intricate time-related treatment decisions in the ICU.  Professional judgment and discretion acquired with practice and education, thus, emerge as major factors which highly influence ICU practices. In this respect, the studies also open up further questions regarding decision-making in interprofessional teams and the contribution  of non-physician health-care professions. Moreover, the fact that personal rather than national differences occur might indicate that professional integrity is shaped by practice and experience as well as by personal values, more than by national laws. In this respect, the comparative analysis of the French and German studies supports an “integrated” understanding of medical professionalism (Spranzi 2016). Its specific content is relative to different clinical contexts (here, the ICU) and to personal training and values rather than to a superior and universal set of ideals adjusted to the constraints of national legal systems.

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5.5  Conclusions The results of the two qualitative studies, which were conducted independently, show remarkable similarities regarding considerations of time in WH and WD decision-­making in ICUs in France and Germany, despite different legal frameworks. Indeed, the French and German laws employ divergent strategies for dealing with ethical problems: one path highlights reconstructing the patient’s will, the other one points towards agreeing collectively on a limit for life-sustaining treatment when it becomes futile. Given the similarity of the results, despite the different legal frameworks in France and Germany, it can be concluded that the physicians’ characters and values, training and professional experience probably play a major role compared to the legal and cultural frameworks. Further quantitative research should address this hypothesis and could contribute to an ongoing international exchange which will advance ICU care in both countries from an ethical point of view.

References Alonso, A., D. Dorr, and K. Szabo. 2017. Critical appraisal of advance directives given by patients with fatal acute stroke: An observational cohort study. BMC Medical Ethics 18: 7. https://doi. org/10.1186/s12910-­016-­0166-­5. Asch, David, and Nicholas Christakis. 1996. Why do physicians prefer to withdraw some forms of life support over others? Medical Care 34: 103–111. Christakis, Nicholas A., and David A. Asch. 1993. Biases in how physicians choose to withdraw life support. Lancet 342: 642–646. https://doi.org/10.1016/0140-­6736(93)91759-­f. Dahmen, Birte Malena, Jochen Vollmann, Stephan Nadolny, and Jan Schildmann. 2017. Limiting treatment and shortening of life: Data from a cross-sectional survey in Germany on frequencies, determinants and patients’ involvement. BMC Palliative Care 16 (3). https://doi.org/10.1186/ s12904-­016-­0176-­6. Ferrand, E., P.  Jabre, C.  Vincent-Genot, F.  Lemaire, C.  Brun-Buisson, and J.  Marty. 2008. Décisions de limitation et d’arrêts des thérapeutiques actives e réanimation, 7 ans après l’étude LATAREA. Réanimation 17: 51. Hartog, C.S., and J.  Benbenishty. 2015. Understanding nurse-physician conflicts in the ICU. Intensive Care Medicine 41: 331–333. https://doi.org/10.1007/s00134-­014-­3517-­z. Haute Autorité de Santé. 2018. Guide du parcours de soins: Comment mettre en œuvre une sédation profonde et continue maintenue jusqu’au décès? https://www.has-­sante.fr/upload/docs/ application/pdf/2018-­03/app_164_guide_pds_sedation_web.pdf. Accessed 7 October 2019. Horn, Ruth. 2013. Euthanasia and end-of-life practices in France and Germany. A comparative study. Medicine, Health Care and Philosophy 16: 197–209. https://doi.org/10.1007/ s11019-­011-­9357-­5. ———. 2018. The “French exception”: The right to continuous deep sedation at the end of life. Journal of Medical Ethics 44: 204–205. https://doi.org/10.1136/medethics-­2017-­104484. Jox, R.J., M. Krebs, M. Fegg, S. Reiter-Theil, L. Frey, W. Eisenmenger, and G.D. Borasio. 2010. Limiting life-sustaining treatment in German intensive care units: A multiprofessional survey. Journal of Critical Care 25: 413–419. https://doi.org/10.1016/j.jcrc.2009.06.012.

92

A.-H. Seidlein et al.

Jox, R.J., R.J.  Horn, and R.  Huxtable. 2013. European perspectives on ethics and law in end-­ of-­life care. In Handbook of clinical neurology, ed. J.L. Bernat and R. Berevsford, 155–165. Elsevier B.V. Jozwiak, M., X.  Monnet, and J.L.  Teboul. 2016. Implementing sepsis bundles. Annals of Translational Medicine 4: 332. https://doi.org/10.21037/atm.2016.08.60. Kozlowski, D., M. Hutchinson, J. Hurley, J. Rowley, and J. Sutherland. 2017. The role of emotion in clinical decision making: An integrative literature review. BMC Medical Education 17 (1): 255. https://doi.org/10.1186/s12909-­017-­1089-­7. Langer, S., I. Stengel, S. Fleischer, R. Stuttmann, and A. Berg. 2016. Perspectives on advance directives among German intensive care physicians in leading positions. Deutsche Medizinische Wochenschrift 141: 73–79. https://doi.org/10.1055/s-­0042-­104038. Leder, N., D. Schwarzkopf, K. Reinhart, O.W. Witte, R. Pfeifer, and C.S. Hartog. 2015. The validity of advance directives in acute situations. Deutsches Ärzteblatt International 112: 723–729. https://doi.org/10.3238/arztebl.2015.0723. Lesieur, O., M. Leloup, F. Gonzalez, M.F. Mamzer, and Epilat study group. 2015. Withholding or withdrawal of treatment under French rules: A study performed in 43 intensive care units. Annals of Intensive Care 5: 56. https://doi.org/10.1186/s13613-­015-­0056-­x. Mayring, P. 2014. Qualitative content analysis: Theoretical foundation, basic procedures and software solution. Klagenfurt. Mehter, H.M., J.B. McCannon, J.A. Clark, and R.S. Wiener. 2018. Physician approaches to conflict with families surrounding end-of-life decision-making in the intensive care unit. A qualitative study. Annals of the American Thoracic Society 15: 241–249. https://doi.org/10.1513/ AnnalsATS.201702-­105OC. Pecanac, K.E., and M.L. Schwarze. 2018. Conflict in the intensive care unit: Nursing advocacy and surgical agency. Nursing Ethics 25: 69–79. https://doi.org/10.1177/0969733016638144. Petrinec, A.B., and B.R. Martin. 2018. Post-intensive care syndrome symptoms and health-related quality of life in family decision-makers of critically ill patients. Palliative and Supportive Care 16: 719–724. https://doi.org/10.1017/S1478951517001043. Rietjens, J.A.C., R.L. Sudore, M. Connolly, J.J. van Delden, M.A. Drickamer, M. Droger, A. van der Heide, D.K. Heyland, D. Houttekier, D.J.A. Janssen, L. Orsi, S. Payne, J. Seymour, R.J. Jox, I.J. Korfage, and Care European Association for Palliative. 2017. Definition and recommendations for advance care planning: An international consensus supported by the European Association for Palliative care. Lancet Oncology 18: 543–551. https://doi.org/10.1016/ S1470-­2045(17)30582-­X. Schweda, M., S. Schicktanz, A. Raz, and A. Silvers. 2017. Beyond cultural stereotyping: Views on end-of-life decision making among religious and secular persons in the USA, Germany, and Israel. BMC Medical Ethics 18: 13. https://doi.org/10.1186/s12910-­017-­0170-­4. Spranzi, M. 2016. When patients’ values challenge professional integrity. Perspectives in Biology and Medicine 59: 326–336. Sprung, C.L., S.L. Cohen, P. Sjokvist, M. Baras, H.H. Bulow, S. Hovilehto, D. Ledoux, A. Lippert, P. Maia, D. Phelan, W. Schobersberger, E. Wennberg, T. Woodcock, and Group Ethicus Study. 2003. End-of-life practices in European intensive care units: The Ethicus Study. Journal of the American Medical Association 290: 790–797. https://doi.org/10.1001/jama.290.6.790. Sprung, C.L., K. Rusinova, and O.T. Ranzani. 2015. Variability in forgoing life-sustaining treatments: Reasons and recommendations. Intensive Care Medicine 41: 1679–1681. https://doi. org/10.1007/s00134-­015-­3868-­0. Sprung, C.L., B.  Ricou, C.S.  Hartog, P.  Maia, S.D.  Mentzelopoulos, M.  Weiss, P.D.  Levin, L.  Galarza, V. de la Guardia, J.C.  Schefold, M.  Baras, G.M.  Joynt, H.H.  Bulow, G.  Nakos, V. Cerny, S. Marsch, A.R. Girbes, C. Ingels, O. Miskolci, D. Ledoux, S. Mullick, M.G. Bocci, J. Gjedsted, B. Estebanez, J.L. Nates, O. Lesieur, R. Sreedharan, A.M. Giannini, L.C. Fucinos, C.M. Danbury, A. Michalsen, I.W. Soliman, A. Estella, and A. Avidan. 2019. Changes in end-­ of-­life practices in European intensive care units from 1999 to 2016. Journal of the American Medical Association 2: 1–12. https://doi.org/10.1001/jama.2019.14608.

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SRLF Commission d’éthique. 2015. Communiqué sur la loi Claeys-Leonetti. Société de Réanimation de Langue Français. https://www.srlf.org/reactu/sur-­la-­loi-­claeys-­leonetti-­ une-­avancee-­et-­des-­difficultes-­dapplication-­qui-­concernent-­les-­reanimateurs/. Accessed 7 Oct 2019. Van Beek, K., K. Woitha, N. Ahmed, J. Menten, B. Jaspers, Y. Engels, S.H. Ahmedzai, K. Vissers, and J.  Hasselaar. 2013. Comparison of legislation, regulations and national health strategies for Palliative care in seven European countries (results from the Europall Research Group): A descriptive study. BMC Health Services Research 13: 275. https://doi.org/10.1186/ 1472-­6963-­13-­275. van Beinum, A., L. Hornby, R. Ward, T. Ramsay, and S. Dhanani. 2015. Variations in the operational process of withdrawal of life-sustaining therapy. Critical Care Medicine 43: 450–457. https://doi.org/10.1097/CCM.0000000000001163. Anna-Henrikje Seidlein  is a research fellow at the Institute of Ethics and History of Medicine at University Medicine Greifswald (Germany). She holds a bachelor’s and master’s degree in Nursing Science and obtained her doctoral degree in Medical Ethics. She has a background in intensive care nursing and clinical ethics consultation. Her main research focus lies on socio-empirical research regarding ethical questions associated with health-care practices. Sabine Salloch  is a professor and head of the Institute of Ethics, History, and Philosophy of Medicine, Hannover Medical School (Germany). She has a background in medicine and philosophy and specialises in bioethical theory, empirical-­ethical research and medical professionalism. Marta Spranzi  has a background in history and philosophy of science. She obtained her PhD at the University of Pittsburgh, USA.  Currently, she is an associate professor at the University of Versailles St-Quentin-en-Yvelines (France) and a clinical ethics consultant at the Centre d’Ethique Clinique in Paris (France). Her main research interest lies in the epistemological and methodological underpinnings of clinical ethics, medical decision-making in different clinical contexts and empirical ethics. Her latest book is “Le travail de l’éthique. Décision médicale et intuitions morales” (Mardaga, 2018).

Chapter 6

Brazilian Medical Professional Ethics in Palliative and End-of-Life Care – Advances and Expectancies Guilherme Gryschek

6.1  Introduction Palliative care is key to any health-care system worldwide to approach life-threating conditions, such as cancer, organ failure and neurodegenerative disease. Palliative and end-of-life care emphasise patient autonomy, quality of life and comprehensive care, incorporating physical, emotional, social and spiritual dimensions of care. This approach is necessary and urgent in Brazil, considering its current demographic and epidemiological transition, and should increase progressively. However, Palliative care is not widely practiced in the Brazilian health system. The role of physicians is particularly limited by several historical and cultural reasons. This chapter will consider Brazil’s demographic and epidemiological situation and how it is related to palliative and end-of-life care provision. This context will support how physicians’ professional ethics have been updated to meet the urgent need of providing Palliative care. Finally, the future perspectives of Palliative care and ethical end-of-life issues in Brazil will be pointed out as a consequence of the advances in end-of-life ethics.

6.2  Background Brazil is a country of continental dimensions, with a population of over 209 million (Institution Brasileiro de Geografia e Estatistica 2016). Population aging occurs at a rapid pace when compared to other countries (Table 6.1). Table 6.1 shows how fast the population of over 65-year-old people increases from 15 to 30% of the total population (United Nations 2019). This demographic transition will happen in G. Gryschek (*) School of Medical Sciences, University of Campinas (UNICAMP), Campinas, SP, Brazil © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_6

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Table 6.1  – Comparison: proportion of the population 65 years old or more, rising from 15 to 30% in some Latin American and European countries (United Nations 2019)

Country Brazil United Kingdom Germany France Argentina Mexico

The year the population aged 65 or more will achieve 15% 2033 1980

The year the population aged 65 or more will achieve 30% 2070 2100

Number of years between 15 and 30% 37 120

1982 1995 2044 2041

2050 2075 2095 2100

68 80 51 59

Brazil in about 37 years, while the same process in the United Kingdom will take about 120  years. Allied to this, the causes of morbidity and mortality have been changing, with increasing chronic life-limiting conditions. The main causes of death are chronic diseases (cardiovascular and respiratory diseases), cancer and external causes (mostly violent deaths, such as car accidents, homicides and suicides) (Marinho et al. 2018). In the context of a fast aging population and the increase of chronic life-threating diseases, the Brazilian health system still does not offer palliative care as much as is needed, as will be shown next. Nowadays, contagious diseases and external factors (such as accidents and violence) remain as important causes of death (Barreto et al. 2011; Reichenheim et al. 2011). In addition, many life-threating conditions (cancer and organs failure) are increasing as fast as the other main causes of death (Schmidt et al. 2011). All these conditions bring a growing burden to the health-care system, which demands resources to be supported. As a result, end-of-life care is not a priority when even regular care cannot be properly offered (Duarte Moritz 2011). Several factors may contribute to the low provision of palliative care, ranging from political and cultural issues to resource availability (e.g. low opioid availability) and the lack of health professionals’ curricula and training in palliative and end-of-life care (Floriani and Schramm 2007). A broad overview of palliative care provision was published as a report, using the Quality of Death Index, in 2015 (Murray 2015). This report analyses five dimensions of palliative care provision in 80 countries, ranking these countries based on that. Brazil was number 42 out of 80 in this report, with significant deficiencies in providing adequate Palliative care, as briefly listed and commented on below. 1. Palliative and health-care environment (Brazil’s ranking: 36/80): it measures the country’s success in delivering palliative care, considering which services are available — whether in hospices, hospitals, care homes or people’s own homes. The indicator includes the country’s overall spending on health care, the presence and strength of government policies on palliative care, the availability of research-based policy evaluation and the capacity to deliver palliative care services. Brazil is developing its own national palliative care network. Nevertheless,

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the actual capacity to deliver palliative care is very low: only 3 out 1000 people that should receive palliative care at the end of life have been able to receive it. In this specific matter, Brazil is ranked 64 out 80. This dimension analysis highlights the huge challenge facing the Brazilian health system in providing adequate palliative care in terms of public policies, financing and service provision. The Ministry of Health approved the first resolution for palliative care organisation and delivery from a national perspective in 2018 (Comissão Intergestores Tripartite 2018). This resolution declares that palliative care must be part of the national public health system in all modalities (hospital, hospices, outpatient clinics, primary care), describing palliative care directives and attributes. Although this resolution is the first step on a national level for palliative care organisation and provision, it suggests a new political and cultural perception of the need for palliative care. At the same time, the Brazilian Association of palliative care conducted a survey in 2018 and tracked the palliative care services throughout Brazil. There were 177 palliative care services (131 hospital-based and 8 hospices), which produces the ratio 1 service to 1,146,882 Brazilians (ANCP 2018). Therefore, the population needs related to the end-of-life care and health-care environment are reaching an important momentum in Brazil. 2. Human resources (Brazil’s ranking 33/80): although there are specialized palliative care professionals, there are lack of physicians, nurses and other support staff. Health professionals in Brazil are generally not qualified to offer palliative care, despite the needs of the population (Fonseca and Geovanini 2013; Padilha de Toledo and Gonçalves Priolli 2012). An important reason among many is the lack of palliative and end-of-life care in most of medical schools’ curricula (Ricardo de Oliveira et al. 2013). Even medical ethics was only recently included in most medical schools as a mandatory discipline (Ricardo de Oliveira et al. 2013). Therefore, specialized health professionals who received any training in end-of-life care are mostly based in large city services. 3. Affordability of care (Brazil’s ranking 49/80): there are few government subsidies or programmes for individuals accessing palliative care services. If available, the qualification criteria are unclear, and funds are not easy to access. Funding is restricted in the public health system. There is a national budget for use in specific health programmes, usually health services run by the local city government. In this sense, all public health budgets have to be shared among different health needs, such as women’s health (e.g. pregnancy), health vigilance (e.g. to prevent epidemics through vaccines), treatment of oncologic diseases and organ transplantation. Thus, all expenditure related to health and the treatment and prevention of diseases are discussed at national and local governmental levels to supply the public health-care system with the resources needed. It has only been in recent years that the understanding of the need for palliative care has started discussions on how to fund these services and expand their access (Duarte et al. 2018). 4. Quality of care (Brazil’s ranking 51/80): not easily available and/or access is restricted through laws and bureaucratic red tape or prejudices. The evaluation of quality criteria and indicators in palliative care provision is very difficult to

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ascertain due to the shortage of services and the underdevelopment of palliative care (ANCP 2018). Opioid consumption per capita, for example, could be an indirect indicative on the poor quality of care provision, since in South America this number is up to 23 times lower than in Europe (INCB 2010). 5. Community engagement (Brazil’s ranking 33/80): the understanding and awareness of palliative care services is very low among the general public and little information is available through the government and community’s communication channels. End-of-life care principles and services are not well-known by the general public. The Brazilians’ understanding of end-of-life care is not based on palliative care principles, but is focused on disease-centred care and the search for a cure. Consequently, health professionals, especially physicians, still choose intensive intervention, pursuing the extension of life at any cost (Menezes 2011). The aspects presented above illustrate the general context of palliative and end-­ of-­life care in Brazil. Several aspects may contribute to this situation, beginning with the Brazilians own conception of dying and death, as discussed in more detail in the next section.

6.3  End of Life for Brazilians Around the world, End-of-life issues have been discussed, such as patient’s preferences, place of death and adequate symptom control, around the world. Thus, end-­ of-­ life care considers the patient’s autonomy, emphasising quality of life and respecting the patient’s will until the last moments of life. In many countries, end-­ of-­life care is focused on the quality of life rather than life-prolonging measures. Consequently, health systems and health professionals, for example, provide opioids for symptom control, such as pain and dyspnea. Health services which are able to provide palliative care are essential to offer the proper care for dying patients. Interestingly, Brazilians show different care priorities compared to other populations, related to what should be more important when it comes to health-care at the end of life. Fifty percent of Brazilians state that preventing death and extending life as long as possible are the most important goals. In Italy, for example, 13% of Italians would answer the same (Fig. 6.1) (KFFE 2017). Therefore, conversely, a remarkably different perspective on end-of-life goals exists in Brazil compared to other countries. Brazilians want a longer life and they undervalue the quality of life dimension as they approach death. Some factors might explain the Brazilians’ perspective regarding end-of-life care. Since the last century, Brazil has made great strides in addressing the causes of mortality. In the early twentieth century, mass vaccination, improved sanitation and increasing income (giving greater access to food and consumer goods) drastically reduced maternal and child mortality, making the event of early death less common to the average Brazilian (Schramm et al. 2004; Paim et al. 2011). Meanwhile, hospital services and greater access to technology had developed greatly. Consequently, critically ill patients could receive better care and patients with life-threatening conditions had a

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Which do you think should be more important when it comes to health care at the end of people's lives? Preventing death and extending life as long as possible Helping people to be without pain, discomfort, and stress Both Not sure/No answer

Japan Italy

7%

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Fig. 6.1  Comparison of end-of-life care priorities among four countries: Brazilian emphasis on death prevention and extending life, author’s illustration based on (KFFE 2017)

higher chance of prolonging their lives (Burlá and Py 2014). This context contributed to building the paradigm of technological and curative medicine, which promises to use all its resources to prevent death. Thus, health professionals, especially physicians, and the general population tend to trust that medicine and the care it provides would be able to prevent death itself. Thus, several interventions and procedures are performed, regardless of the patient’s preferences of care in terminal situations. When death finally comes, it is considered as a medical failure. Consequently, medicine and physicians must struggle against disease and death at all costs, reducing the importance of patient’s autonomy in this process and relegating the quality of life and symptom control to the background (De Morais 2010; Ribeiro 2006). As mentioned earlier, the evident restricted access to services that could offer proper end-of-life care and a low use of opioids (when compared to other countries) is possibly related to this cultural perspective (INCB 2010). Thus, it is very likely that most Brazilians will not have their symptoms adequately controlled and be suffering at the end of their lives (ANCP 2018; Murray 2015). In recent years, however, some changes have been happening. An increasing awareness of the importance of palliative care among patients, their families and health professionals is leading to discussions on medical training and practice. In order to respond to this, medical schools and professional councils have been updating and implementing fundamental steps to change the palliative care perspective in Brazil (Ferreira and Porto 2018; Malta et  al. 2018; Padilha De Toledo and Gonçalves Priolli 2012; Ricardo de Oliveira et al. 2013). The next section will describe how the professional council has been updating the Code of Ethics related to end-of-life care considering the physicians’ challenges for providing care for dying patients.

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6.4  Medical Practice and Professional Ethics Medical professionals in Brazil, as in most western countries, play a key role in care, especially to co-ordinate and appoint interventions (procedures or drug prescription) needed in the course of diseases. Similar to every profession, the regulation of the medical profession depends on professional councils. In Brazil, these councils are non-governmental professional organisations at the federal and regional levels which register every medical professional, giving allowance to practice medicine. These councils must also oversee the physicians’ ethical behaviour. The board prepares a periodically revised code of professional ethics, the Code of Medical Ethics (Código de ètica Médica 2013), to guide the medical practice concerning ethical aspects. The Brazilian technological, social and cultural context described above shows that medical professionals in Brazil play a leading role in health care and often take the responsability for the course of the disease and the interventions to cure or care. Patients, family members, other medical colleagues and society often trust and give broad powers to the physicians for them to decide the course of treatment for patients. Physician-patient relationships have been guided by the Paternalism paradigm for decades (Silva 2010). This paternalistic relationship between physician and patient presents great asymmetry, in which the determination of the medical professional is accepted without question, generally without considering the will and autonomy of the patient. It is common for patients not to be informed about their own health situation and they do not actively participate in care decisions that affect them directly. The physician is responsible for advocating and performing actions that they consider in the best interest of the patient. However, this paradigm has begun to change in recent years (Burlá and Py 2014; Silva 2010.22,27). Earlier versions of the Brazilian Medical Code of Ethics, until 2010, stated that the physician did not have to discuss certain aspects of the diagnosis, therapy and prognosis with the patient if the physician understood that doing so would be against the patient’s best interests. Thus, while the code of professional ethics guides professional practice, it also reflects the historical context in which it was drawn up (Ferreira and Porto 2018). Health professionals, patients, family members and society led the Federal Council of Medicine to revise the code of medical ethics in 2009 and publish it in 2010. This version of the code updated several aspects of professional ethics, including the physician-patient relationship, the autonomy of the patient and end-of-life care (Ferreira and Porto 2018; Menezes 2011). According to the 2010 release, physicians must respect the patient’s wishes for their own care. Therefore, the Code now reflects the current physician-patient relationship, in which care should be patient-centred and the physician has no longer a paternalistic role but serves as a counsellor and partner, respecting the patient’s needs and wishes, and granting to the patient greater autonomy in health decisions (Ribeiro 2006; Silva 2010). The 2010 version of the Medical Code of Ethics brought outstanding valuable advances regarding end-of-life care ethics, and the 2018 version keeps the same advances (Ferreira and Porto 2018). These advances also have an influence on clinical practice. Once the awareness of palliative care grows and

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the patient’s autonomy is strengthened in medical and care decisions, the whole concept of dying can overcome obsolete practices. The next section will present end-of-life concepts which describe different ways in which the dying process is shaped by physicians. Furthermore, how they have influenced the review of the medical ethics code and underlying discussions in this field within medical schools will be discussed.

6.5  Brazilian Physicians and the End-of-Life Care End-of-life ethics discussions in Brazil usually describe different ethical concepts of providing end-of-life care, as described briefly below: –– Orthothanasia: also known as ‘good death’. This is the death that occurs in a proper manner, at the proper time. Physicians should provide end-of-life care to the patients trying to achieve the orthothanasia. Palliative care aims to provide this condition of death to the patients. –– Dysthanasia: or the ‘wrong death’. This concept describes how most deaths currently occur in Brazil: the extension of life is the priority, regardless of the quality. The patient’s will or comfort is not necessarily considered. Dysthanasia often reflects the result of therapeutic obstinacy implemented by physicians who are not aware of palliative care principles. –– Euthanasia: this well-known concept was used as a starting point to discuss the concepts above. Euthanasia is used to describe when the life is actively terminated by the physician or another person, performed at the patient’s request or even without his/her request, e.g. out of an act of mercy. In the Brazilian context, this is considered a criminal act and is also forbidden by the Medical Code of Ethics. The end-of-life ethical discussion and the development of the concepts described above provided a starting point for the Federal Medical Council to review the Medical Code of Ethics. The Code of Medical Ethics did not mention palliative care until 2010. The physician’s ethical role would be to carry out interventions and prescribe treatment in order to keep the patient alive, regardless of the patient’s will or prognosis. In fact, the code itself justified the physician’s attitude in prolonging the patient’s life under his care as much as possible, using all available resources (Menezes 2011). In 2006, the Federal Medical Council issued a statement recommending the palliative care perspective as a valid and necessary resource in many terminal cases. The statement was essentially: “to define objective and subjective criteria to allow physicians to practice orthothanasia, including a multidisciplinary team to analyse all the aspects involved in the care [of dying patients” (Duarte Moritz 2011; author’s translation). The public misunderstanding at the time led to a judicial dispute, based on the understanding that orthothanasia had the same criminal implication as euthanasia. One of the misinterpretations was that the Federal Medical Council allowed a physician to perform euthanasia, something that was, in

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addition to an ethical violation, also a criminal act (Duarte Moritz 2011; Vasconcelos et al. 2011). This episode showed that the public comprehension of end-of-life care was linked exceedingly to the practice of euthanasia. On the other hand, it brought the topic to the public and medical discussion, something that was not openly debated at that time, despite finiteness and death being quite present in medical practice (Duarte Moritz 2011). As a result, the Federal Council released a review of the Code of Ethics in 2010. The reviewed version introduced updates regarding end-­ of-­life care: Palliative care was now formally recommended as part of medical practice. From this version on, the practice of dysthanasia has become an ethical violation and should be avoided (Duarte Moritz 2011; Ferreira and Porto 2018). Accordingly, the 2010 Medical Code of Ethics (Código de ètica Médica 2013), in its ‘Fundamental Principles’, presented clear advances for end-of-life care in two of them, described as follows [author’s translation]: • XXI – Regarding the professional decision-making process, in consonance with his consciousness and legal statements, the physician will accept his patient’s openly expressed choices related to diagnostic procedures and health treatments, as long they are appropriate to the case and scientifically recognised. • XXII – Considering irreversible and terminal clinical situations, the physician will avoid unnecessary diagnostic and therapeutic procedures and will provide to the patients under his care all the appropriate palliative care. Many services and palliative care teams have emerged in Brazil in the last decade, probably due to the impact of this updated ethical understanding on end-of-life care. To some extent, physicians have become more open to the principles of palliative care (Brugugnolli et  al. 2013; Burlá and Py 2014; Ferreira and Porto 2018; Vasconcelos et al. 2011). Medical schools have also included these end-of-life ethics discussions and palliative care teaching (Franco et al. 2014; Padilha De Toledo and Gonçalves Priolli 2012; Ricardo de Oliveira et al. 2013) in their curricula. As a result of advances in the professional ethical field, palliative medicine has been recognised as a subspecialty of several medical specialties. Consequently, there was a dissemination of postgraduate training programmes and more professionals are being prepared to work in end-of-life care (ANCP 2018). Despite these recent advances, some topics related to end-of-life ethics are still poorly discussed. In the following, these topics will be depicted, and it will be delineated why it is essential to broaden the discussion over the next few years.

6.6  The Euthanasia and Assisted Suicide Discussion Euthanasia and assisted suicide are quite emblematic topics of discussion regarding professional end-of-life ethics, especially when the autonomy of the patient is increasingly important in modulating the professional attitude in decisions. The last version of the Medical Code of Ethics does not discuss euthanasia or assisted suicide, due to the current understanding of these practices as crimes which violate

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other ethical principles of the Code. Although they are sensitive themes in the Brazilian context, these specific debates on euthanasia and assisted suicide seem to be too early for some reason. Firstly, the Brazilian cultural context is quite traditional and conservative. An open discussion about death and dying is far from the daily life of most Brazilians, who do not consider their own mortality in their daily lives. As mentioned earlier, it is expected that the medical professionals will make efforts to prolong life at all costs and the possibility of death is rarely considered before its onset. Thus, few decisions regarding the process of dying are discussed. For most of the population, which is not used to exercising their autonomy in relation to their own care, the idea of euthanasia is far from their reality. Even for physicians, the understanding and practice of care at the end of life is unclear (Brugugnolli et al. 2013; Pereira et al. 2019; Vasconcelos et al. 2011). Furthermore, euthanasia is considered a crime in Brazil. Thus, most physicians and patients would not even consider this possibility, because it cannot be performed without the risk of prosecution. Finally, and perhaps most relevant, the discussion of these end-of-life alternatives is considered a nonsense when more than 90% of deaths occur without any access to palliative care or palliative actions (Connor and Sepulveda Bermedo 2014; Murray 2015). Professionals, services and even opioids still have restricted access, so dignifying end-of-life care is far from most Brazilians. Thus, there is a great necessity for a lot of progress in end-of-life care, making it largely available. After achieving a larger palliative care coverage for the Brazilian population, other options for end-of-life care may be considered, both professionally and legally (Duarte Moritz 2011).

6.7  Conclusion Medical ethics in Brazil has made important advances in recent years, indicating a moment of transition and changes in professional practice. Patient autonomy and the emphasis on offering palliative care as an ethical imperative have laid the ethical foundations for the development of services and education of professionals to work in end-of-life care. In addition, as the access to qualified palliative care increases and orthothanasia becomes the gold standard for end-of-life care, Brazilian society may be ready for further discussions on euthanasia and assisted suicide.

References ANCP: Academia Nacional de Cuidados Paliativos. 2018. Análise Situacional e Recomendações para Estruturação de Programas de Cuidados Paliativos no Brasil. São Paulo. https://paliativo.org.br/wp-­content/uploads/2018/12/ANALISE-­SITUACIONAL_ANCP-­18122018.pdf. Accessed 26 February 2020. Barreto, M.L., M.G. Teixeira, F.I. Bastos, R.A. Ximenes, R.B. Barata, and L.C. Rodrigues. 2011. Successes and failures in the control of infectious diseases in Brazil: Social and environmental context, policies, interventions, and research needs. Lancet 377: 1877–1889.

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Brugugnolli, I.D., R.A. Teixeira Gonsaga, and E. Marques da Silva. 2013. Ética e cuidados paliativos: o que os médicos sabem sobre o assunto? [Ethics and Palliative care: What do physicians know about it?]. Revista Bioética 21: 477–485. Burlá, C., and L.  Py. 2014. Palliative care: Science and protection at the end of life. Cadernos Saúde Pública 30: 1139–1141. Código de ètica Médica. 2013. Conselho Regional de Medicina do Estado de São Paulo. http://www.cremesp.org.br/library/modulos/publicacoes/pdf/CodigoEticaMedica2013.pdf. Accessed 26 February 2020. Comissão Intergestores Tripartite. 2018. Resolução No 41, De 31 De Outubro De 2018. Diário Of da União. seção 1:276. http://www.cofen.gov.br/wp-­content/uploads/2018/11/Resoluçao-­CP. pdf. Accessed 24 February 2020. Connor, S.R., and M.C. Sepulveda Bermedo, eds. 2014. Global atlas of Palliative care at the end of life. World Palliative care Alliance. https://www.who.int/nmh/Global_Atlas_of_Palliative_ Care.pdf. Accessed 26 February 2020. De Morais, I.M. 2010. Autonomia pessoal e morte [Personal autonomy and death]. Revista Bioética 18: 289–309. Duarte Moritz, R. 2011. Conflitos bioéticos do viver e do morrer. Conselho Federal de Medicina. Brasília. https://portal.cfm.org.br/images/stories/biblioteca/conflitos.pdf. Accessed 26 February 2020. Duarte, E., L.J. Eble, and L.P. Garcia. 2018. 30 anos do Sistema Único de Saúde. Epidemiololgia e Serviços Saúde 27. https://doi.org/10.5123/s1679-­49742018000100018. Ferreira, S., and D. Porto. 2018. Novo Código de Ética Médica, bioética e esperança [New code of medical ethics, bioethics and hope]. Revista Bioética 26: 479–483. Floriani, C.A., and F.R. Schramm. 2007. Desafios morais e operacionais da inclusão dos cuidados paliativos na rede de atenção básica [Moral and operational challenges for the inclusion of Palliative care in primary health care]. Cadernos de Saúde Pública 23: 2072–2080. Fonseca, A., and F.  Geovanini. 2013. Cuidados paliativos na formação do profissional da área de saúde [Palliative care in the formation of health-care Professionals]. Revista Brasileira de Educacao Médica 37: 120–125. Franco, C.A.G. dos S., M.R.  Cubas, and R.S.  Franco. 2014. Currículo de medicina e as competências propostas pelas diretrizes curriculares [The medicine curriculum and competences proposed for curriculum guidelines]. Revista Brasileira de Educação Médica 38: 221–230. INCB: International Narcotics Control Board. 2010. Report of the International Narcotics Control Board on the availability of internationally controlled drugs: Ensuring adequate access for medical and scientific purposes. Vol. 4. 2010. https://www.incb.org/documents/ Publications/AnnualReports/AR2010/Supplement-­AR10_availability_English.pdf. Accessed 26 February 2020. Institution Brasileiro de Geografia e Estatistica. 2016. Projeção da população. Instituto Brasileiro de Geografia e Estatistica. https://www.ibge.gov.br/apps/populacao/projecao/ Accessed 12 December 2018. KFFE: Kaiser Family Foundation/The Economist. 2017. Four-country survey on aging and endof-­life medical care. The Economist and The Henry J. Kaiser Family Foundation. http://files. kff.org/attachment/Topline-­Kaiser-­Family-­Foundation-­The-­Economist-­Four-­Country-­Survey-­ on-­Aging-­and-­End-­of-­Life-­Medical-­Care. Accessed 26 February 2020. Malta, R., B. Rodrigues, and D. Gonçalves Priolli. 2018. Paradigma na formação médica: atitudes e conhecimentos de acadêmicos sobre morte e cuidados paliativos [End-of-life paradigm in medical training: Attitudes and knowledge about death and Palliative care]. Revista Brasileira De Educacao Medica 42: 33–44. Marinho, F., V.M. de Azeredo Passos, D.  Carvalho Malta, E.  Barboza França, D.M.X.  Abreu, V.E.M. Araújo, M.T. Bustamante-Teixeira, et al. 2016. Burden of disease in Brazil, 1990–2016: A systematic subnational analysis for the Global Burden of Disease Study 2016. Lancet 2018; 392: 760–775. https://doi.org/10.1016/S0140-­6736(18)31221-­2.

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Menezes, R.A. 2011. Entre normas e práticas: tomada de decisões no processo saúde/doença [Norms and practices: Decision making in health and disease]. Physis. Revista de Saúde Coletiva 21: 1429–1449. Murray, S. 2015. The 2015 quality of death index. Ranking palliative care across the world. Ed. David Line. The Economist. Intelligence Unit, 71. https://eiuperspectives.economist.com/sites/ default/files/2015%20EIU%20Quality%20of%20Death%20Index%20Oct%2029%20FINAL. pdf. Accessed 26 February 2020. Padilha De Toledo, A., and D.  Gonçalves Priolli. 2012. Cuidados no fim da vida: o ensino médico no Brasil [End-of-life care education in Brazilian medical schools]. Revista Brasileira Educacao Médica 36: 109–117. Paim, J., C. Travassos, C. Almeida, L. Bahia, and J. MacInko. 2011. The Brazilian health system: History, advances, and challenges. Lancet 377: 1778–1797. Pereira, E.A.L., A.B. Rangel, and J.C.G. Giffoni. 2019. Identificação do nível de conhecimento em cuidados paliativos na formação médica em uma escola de medicina de Goiás [Identifying the level of knowledge in Palliative care among medical students in Goiás]. Revista Brasileira de Educacao Médica 43: 65–71. Reichenheim, M.E., E.R. De Souza, C.L. Moraes, M.H.P. De Mello Jorge, C.M.F.P. Da Silva, and M.C. De Souza Minayo. 2011. Violence and injuries in Brazil: The effect, progress made, and challenges ahead. Lancet 377: 1962–1975. Ribeiro, D.C. 2006. Autonomia: viver a própria vida e morrer a própria morte [Autonomy: To live one’s own life and to die one’s own death]. Cadernos Saúde Pública 22: 1749–1754. Ricardo de Oliveira, J., A.C. Ferreira, and N. Alves de Rezende. 2013. Ensino de bioética e cuidados paliativos nas escolas médicas do Brasil [The teaching of bioethics and Palliative care in Brazilian medical schools]. Revista Brasileira Educacao Médica 37: 285–290. Schmidt, M.I., B.B. Duncan, G. Azevedo e Silva, A.M. Menezes, C.A. Monteiro, S.M. Barreto, D. Chor, and P.R. Menezes. 2011. Chronic non-communicable diseases in Brazil: Burden and current challenges. Lancet 377: 1949–1961. Schramm, J., A.  Ferreira De Oliveira, I.  Da Costa Leite, J.  Gonçalves Valente, Â.M.  Jourdan Gadelha, M. Crisóstomo Portela, and M. Rodrigues Campos. 2004. Transição epidemiológica e o estudo de carga de doença no Brasil [Epidemiological transition and the study of burden of disease in Brazil]. Ciência & Saúde Coletiva 9: 897–908. Silva, H.B.e. 2010. Beneficência e paternalismo médico [Beneficence and medical paternalism]. Revista Brasileira de Saúde Materno Infantil 10: s419–s425. United Nations. 2019. World population prospects 2019. Department of Economic and Social Affairs 49–78. https://population.un.org/wpp/. Accessed 26 February 2020. Vasconcelos, T.J.Q., N.R.  Imamura, and H.C.E.C.  Villar. 2011. O impacto da resolução CFM 1.805/06 sobre os médicos que lidam com a morte [The impact of CFM resolution 1.805/06 on doctors dealing with death]. Revista Bioética 19: 501–521. Guilherme Gryschek  is a family physician in Brazil and has a master’s degree in Public Health. His research is focused on Palliative care, both with patients’ spiritual and emotional needs, and medical education. End-of-life ethics are part of his practice on a daily basis, related to medical care and professional education. He is currently concluding his PhD studies and establishing a palliative care network in a private health service in Brazil.

Chapter 7

Should the Family Be Allowed to Override a Patient’s Decision to Become an Organ Donor after Death? Natalia Kyrtata

7.1  Introduction Organ and tissue donations save thousands of people with terminal organ failure worldwide every year and improve the quality of life of many more. Over the last two decades, medical advances have greatly improved the outcome of organ transplantation, with greater transplant success and fewer reported graft failures (Grinyó 2013). Despite efforts to increase organ donations, the UK and Germany have some of the lowest donation rates in Europe (Fig.  7.1) (Deutsche Stiftung Organtransplantation (DSO): Lebertransplantation 2019; NHS Blood and Transplant 2019). Following the example of Wales, the UK has recently switched to an opt-out system with the aim to increase actual organ donations, however, in January 2020, Germany voted against the proposal for an opt-out legislation, despite seeing a drop in organ donations in 2019 and with more than 9000 people on the organ waiting list in 2020 (Deutsche Welle 2020). Organ donors are broadly categorized into living donors, where organs or part of organs are surgically removed and placed into another person in need, and deceased donors, where organs are harvested after death for the purpose of transplantation. The definition of death in this context is important, as a distinction is made between circulatory and brainstem death. Circulatory death involves cessation of the cardiovascular function. Initially, all organs came from donation after circulatory death, however, recognition of brainstem death shifted the norm to donation after brainstem death, where death is confirmed neurologically and organs are still perfused by the beating heart. The United States of America were the first country worldwide, and Finland the first European one, to adopt this definition in the context of organ donation (Stuart et  al. 1981). In brainstem death, loss of consciousness and N. Kyrtata (*) University Hospitals of Morecambe Bay NHS Foundation Trust, Lancaster, UK e-mail: [email protected] © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_7

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European organ donaŠons in 2019 Spain CroaŠa Portugal France Belgium Czech Republic Finland Great Britain Italy Austria Slovenia Sweden Norway Switzerland Hungary Ireland Denmark Netherlands Slovakia Poland Luxemburg Germany

48.9 34.6 33.6 33.3 30.4 27 26.4 24.9 24.7 23.8 21.1 19 18.8 18.4 18.4 17.4 17.3 14.9 14.4 13.1 11.7 11.2 0

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Fig. 7.1  International organ donations, figure created from data from the European Parliament 2020 briefing (Scholz 2020)

respiratory function is caused by irreversible brain injury and patients are supported by mechanical ventilation. Patients have to die in very specific circumstances for the organs to be harvested and organ donation would not be appropriate in most deaths that occur in hospitals (see Fig. 7.2). It is, however, worth noting that there are no age restrictions regarding potential donors, since tissue and organs can be donated. This makes it particularly important in the context of palliative and end of life care since individuals are often elderly and suffer from chronic co-morbidities. In fact, in the UK it is not uncommon to discuss organ or tissue donation with patients when they are admitted to a hospice. Most European countries have legislation surrounding organ donation, such as the Human Tissue Act (HTA) of England, Wales and Northern Ireland, and the German Transplant Act (TPG). Germany, along with several other European countries including Austria, Belgium, Croatia, Hungary, Luxembourg, the Netherlands, and Slovenia, is part of the Eurotransplant International Foundation which encourages and coordinates organ transplants between these countries. It is not uncommon for Germany to rely on other members of Eurotransplant to receive donations (Deutsches Referenzzentrum für Ethik in den Biowissenschaften 1997; Deutsche Welle 2018).

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Fig. 7.2  Proportion of potential and actual organ donors relative to total deaths in and outside hospital in the UK between 1st April 2020 and 31st March 2021. (Figure adapted from 2019. Organ donation and transplantation. Activity report 2018/2019, pp. 76–86) 1 2020 data: England & Wales www.ons.gov.uk; Scotland www.isdscotland.org.; Northern Ireland www.nisra.gov.uk; 2 2020/2021 data, NHSBT, Potential Donor Audit as at 10 May 2021; 3 2020/2021 deceased donor data: NHSBT, UK Transplant Registry

The organ donation process has since been very carefully developed. Several steps must be taken before a patient is deemed eligible for organ donation and a matching receiver is identified. Organs have to be harvested quickly, but the whole process can be a long one. In some cases, when patients have died due to a severe systemic infection, they are kept alive for over 48 hours for organs to be optimized and cleared from potential infection before being transplanted in the new host. This is an important consideration when the family are involved in decision-making. In most European countries, legislation allows for “extended consent”, i.e. if the individual has not explicitly consented to organ donation during their lifetime, the next of kin or other legal representative can make the decision for them (Deutsches Referenzzentrum für Ethik in den Biowissenschaften 1997). If a deceased patient is eligible for organ donation but is not on the organ donor register, the family is approached and a decision is made based on the deceased individual’s known wishes, wherever that is ascertainable. The thought that a patient’s organs can help save someone’s life provides a lot of comfort to some families. Germany is the only country in Europe where “extended consent” does not apply. Instead, it follows a decision solution, where organ donation cannot go ahead unless the individual has documented their decision to donate.

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Patients who object to donation cannot have their organs used, even if the family of the deceased wishes to donate their loved ones’ organs. It is recognised that the decision not to be a donor is a private one and this wish is respected posthumously. This is not, however, the case for people who wish to be organ donors. Both in Germany and the UK, patients’ families can override their decision to donate, despite being on the organ donor register. In the UK, this lead to approximately 500 families refusing to consent between 2010 and 2016, despite their loved one having registered their wish to be an organ donor. This has resulted in an estimated 1200 people missing out on potential transplants (NHS Blood and Transplant 2016). Although the family’s refusal in such cases is not legally binding, it is currently upheld in practice to minimise distress to families. This has been the subject of several news reports, stating that the family veto is an unnecessary barrier to organ transplants. This chapter will focus on the bioethical implications of the following question: when a patient has consented to donate their organs after their death, should their family be allowed to override this decision? This chapter is guided mainly by the Four Ethical Principles for its simplicity, accessibility and culturally neutral approach to medical ethics (Gillon 1994). First described by Beauchamp and Childress (2001), they illustrate the ethical principles of autonomy (respecting and acknowledging a person’s decisions about their own body), beneficence (our obligation to bring about good through our actions), non-­ maleficence (our obligation avoid causing harm to persons) and justice (particularly in medicine, the fair distribution of resources). This tool is commonly used in bioethics and medical practice.

7.2  Beneficence vs Autonomy Clinicians have an ethical obligation to prioritise their patients’ welfare, in keeping with the ethical principle of beneficence. With hundreds of patients on the organ transplant waiting list, it is the clinician’s duty to promote organ donations and ensure that patients receive the best possible care in a timely manner. Clinicians also have an ethical obligation to support their patients’ wishes. This is based on the principle of autonomy, which states that an individual has the right to make his or her own choices. Patients’ decision about organ donation should, therefore, be respected. The common trade-off that clinicians have to make is between beneficence and respect for patients’ autonomy: the dilemma occurs when a decision has to be made between respecting a patient’s wish not to donate their organs after death and providing another patient with the life-saving treatment of an organ transplant. Regarding the family veto, the ethical dilemma is very different, as a trade-off does not occur between the rights of two patients but between a patient awaiting organ transplantation and the family of a deceased patient who has already consented to organ donation. In this situation, both parties are neglected: the deceased patient’s autonomy is jeopardised and the live patient is denied life-saving treatment.

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7.3  Relational Autonomy Decisions in medicine, and particularly at the end of life, are not made in isolation. Individuals take their wider socio-cultural and familial context into consideration, considering others in their decision-making, including family members and their communities. This is termed relational autonomy and is encompassed by the broader concept of shared decision-making, where family members can be seen as an extension of an individual’s wishes and values. In the Chapter by Azzopardi et al., it is discussed how Maltese patients have been shown to value family involvement, with some preferring a passive or collaborative approach towards decisions about their own health (see also Azzopardi et al. in this volume). It is important to acknowledge that attitudes and beliefs may differ in other cultural and social contexts. This is also relevant in the context of organ donation, where families are the closest representatives of patients and can be asked to provide evidence that their loved one has changed their mind with regards to organ donation. However, one important criticism of relational autonomy is that it cannot always be guaranteed that the family authentically represents the patient’s attitudes. Is a donor’s consent fully informed? The concept of informed consent is closely linked to the core ethical principle of patient autonomy. Lidz et al. (1984) described valid consent, a wider concept which encapsulates informed consent, using three principal criteria: the information is disclosed to a patient who is competent, the patient understands this information and a decision is made voluntarily. Although these criteria have been incorporated into English law, Faden and Beauchamp (1986) oppose this analysis, which, they argue, is too focused on providing information and, thus, does not serve patients’ best interests. They explain that it would be unethical for a doctor to claim they have carried out their duty towards their patient by simply providing extensive information, even though they would not be breaking the law by doing so. This concept is also known as “truth-­ dumping”. Instead, they argue that consent should be regarded as a type of action. This differs significantly from assent, the submissive acceptance of a doctor’s authority. They have termed this concept “autonomous authorisation”, which is achieved in two steps: the patient takes on the responsibility of making a decision and authorises the doctor to carry out the medical plan. Unlike consenting to a medical procedure, however, which will directly benefit the individual, donating one’s organs posthumously does not affect the donor’s welfare directly. In some regards, consenting to donate one’s organs is similar to consenting to participate in medical research, since participants do not receive any direct benefit (unless, of course, they are participating in a therapeutic clinical trial or receive financial compensation for participation) but act in this way altruistically, however large the risk and despite the views of their relatives. Nonetheless, consenting to donate one’s organs after death is inherently different to consenting to participate in research. In medical research, safeguards are put in place to ensure that participation is completely free of coercion and individuals’ consent is fully informed. In the context of organ donation, people may have registered their wish to

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donate years before the opportunity ever arises. As with other medical decisions, such as patients’ advanced care planning or their refusal to undergo cardiopulmonary resuscitation, their wishes are frequently revisited and updated. With organ donation, this is not always the case, since filling in a simple form when applying for a driving license does not meet the standards of informed consent. This is less relevant in the context of Palliative care, where discussions about organ donation are more likely to take place. However, the opportunity may not necessarily arise if, for example, a patient deteriorates rapidly and loses the capacity to consent or revisit their decision to donate.

7.4  Is Consent Valid Posthumously? The Nuffield Council on Bioethics questions whether an individual’s permission to donate their organs after death can be regarded as consent at all. Unlike living donors, there is no risk to the individual’s welfare and, therefore, less information is required when registering. In ethical terms, the Council recognises this permission as “authorisation” rather than “consent” (Weale 2011). A more radical view is that the dead cannot consent at all: since a person cannot do anything once they have died, they cannot provide consent for organ donation. However, this argument alone cannot be used in favour of families overriding a person’s decision made before death. A person’s will or testament is legally binding and respected after their death. It involves decisions about an individual’s property; so why should a decision about their own body be regarded any differently? A will cannot be altered, and the family certainly cannot veto the decisions made in the will. Unlike property, however, it is unclear who has ownership of a person’s body after their death. If not the family, then could it be the state? This raises a different set of ethical questions which are beyond the scope of this chapter. In the US, the legal concept of First Person Authorisation exists, which states that a person’s decision about their body after death is legally binding and should be respected posthumously. Chon et al. (2014) conducted a web-based survey of 58 executive directors of Organ Procurement Organizations in the US and showed that, despite accepting the concept of First Person Authorisation, the views of the family were still sought in 20% of cases and violated the First Person Authorisation due to concerns about negative publicity and the risk of lawsuits. This example shows that the presence of a legal framework alone is not enough to ensure implementation of such a policy.

7.5  Why Should Families’ Views Be Considered? Decisions are generally respected after one’s death, as seen with legal wills and burial wishes. Wilkinson (2011) argue that a person has a very special relationship with their body during their lifetime and should, therefore, have a say in the fate of

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their body after life. Why, then, should families’ views on organ donation be considered, especially when an individual has already explicitly registered themselves as an organ donor? Sharif and Moorlock (2018) develop three main arguments. Firstly, they describe how approaching the family will help establish the most recent wishes of a patient. As described above, organ donor registers are problematic in many ways: registered donors may have changed their minds, individuals wishing to donate may have missed the opportunity to register, while others may have never considered or known they could register but would have been willing to do so if asked during their lifetime. In all these scenarios, the family can be an invaluable source of information and provide a more personal and updated view of the person’s true wishes. The family are, therefore, acting as mere witnesses, as described by Delgado et  al. (2019). Secondly, going against the family’s wishes to donate may cause considerable distress, and individuals eligible for organ donation may have not wished to cause any distress to their family by making them go through an emotional discussion about organ donation. Finally, families’ views are important in their own right and should, therefore, be respected. Delgado et al. (2019) describe this as the family having full decisional authority. Sharif and Moorlock (2018), however, argue that this final point puts the relatives’ wishes above the patient’s, which would prevent the potential donor from having control over what happens to their own body after death.

7.6  Reasons Families Refuse to Consent In the UK, there are multiple reasons why families refuse to consent to donating their loved one’s organs. The majority of refusals derived from families feeling that the length of time for the donation process was too long, which accounted for 28.2% of total refusals. The second and third most common reasons were that the family did not want surgery to the body or they felt that their loved one had already suffered enough, accounting for 8.1% and 7.7% of total refusals respectively. Interestingly, religious or cultural beliefs only accounted for 1.9% of total refusals (UK Donation Ethics Committee 2016). Organ donation campaigning is centred around educating the public and clarifying doubts or dispelling myths surrounding organ donation, such as the fear that a patient’s death may be hastened in order to harvest their organs. However, the most common reason families decline organ donation, even if it goes against their loved one’s wishes, is the family believing that patient’s death is prolonged, since they feel that the length of time for the donation process is too long. As stated earlier, patients can be kept alive for up to 48 hours. This could potentially have implications on the concept of informed consent  – families are known to claim that their loved one would not wish to prolong their death, which could delay burial arrangements. Indeed, patients are not necessarily informed about this potential eventuality when opting in.

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As circumstances may change, it is challenging to know the patient’s wishes once they cannot give consent. In other scenarios, for example, in cases where patients may fall unconscious or lose their ability to make decisions due to brain disease, decisions are made on their behalf based on their best interests. However, whose best interest is then considered once the patient is deceased: the patient waiting for a life-saving organ or the donor’s family? This is an important consideration when implementing policy change, as it appears that lack of will is not necessarily the barrier to organ donation but rather the process itself. Cultural context is important when considering policy change. According to a Brazilian study investigating the perception of family members who refused to consent to organ donation, religious beliefs, denial of brain death, mistrust of the organ donation system and fear of the community’s reaction were important factors which influenced families’ decision-making (De Moraes and Massarollo 2009). Indeed, the word “donation” has replaced the word “retrieval”, which recognises the altruistic nature of giving one’s organs to save the life of another. It has been argued that retrieving organs without effective communication with the family may lead them to believe that their loved one received suboptimal care or even had their death hastened in order to retrieve the organs. This was particularly the case in Brazil, where the introduction of a “presumed consent” system backfired and led to more people opting out than had previously opted in, due to a mistrust of the health-care system (Csillag 1998). This example illustrates the practical challenges of implementing such a policy.

7.7  Removing Barriers to Organ Donation Sharif and Moorlock (2018) argue that it is, prima facie, ethically permissible to remove barriers to donation since a person’s wish to do the right thing should be facilitated and donation is inherently the morally right thing to do. However, the consequences for families and staff may have a negative effect on public perception and the relationship with medical professionals, making implementation of such systems practically challenging. Sharif and Moorlock (2018) introduce an alternative option to avoid such consequences through the concept of nudge theory in the context of organ donation. They explain that to find the right balance between respecting the donor’s autonomy and avoiding distress to the family is to attempt to influence the family’s decisions so they become more aligned with the donor’s wishes. One issue with nudge theory is the risk of manipulation. The authors explain that manipulation bypasses the rational capacities of family members, making it fundamentally different to nudge theory. However, they do acknowledge the challenge in implementing an appropriate nudge system which would avoid this. They also explain the importance of considering different cultural contexts and that a “onesize-fits-all” approach would not be appropriate. One fundamental difference they describe between manipulation and nudge is the benefit such an approach may have not only to the potential donor but to the family itself, by helping to minimise

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distress and allowing them to make decisions they would normally make in less stressful situations. Indeed, Rodrigue et al. (2008) interviewed families of donors and non-donors and found that 94% of donor families would make the same decision compared to 64% of non-donor families, illustrating the point that decisions arising from acute distress, such as the death of a loved one, can lead to decisions that are later regretted. One reason families may regret their decision not to donate is the consequence their decision may have had on potential organ recipients. Providing information about the potential recipients has, therefore, been suggested as a possible strategy but met with criticism, as it could lead to coercion and discrimination, which would be ethically unacceptable. Indeed, families who feel pressured to donate have been shown to be less likely to consent (Burroughs et  al. 1998). However, Shaw and Gardiner  (2018) suggest providing information about the representative sample who would receive such organs instead of individual patients. By acknowledging that decision-making is affected by the context in which decisions are made, a nudge theory approach to organ donation may help promote a context in which the donor’s autonomy is respected and families are allowed to make the decision they would normally make in a less stressful situation. This can be achieved by being transparent about the intentions of initiating a conversation about organ donation. Spain has adopted such a system where families are allowed to refuse donation, nevertheless, refusal rates are low. As one of the most successful countries in organ donation rates in the world, this illustrates empirical evidence to support that such a system where families are consulted does not necessarily hinder donation rates and may, on the contrary, help empower families to make the right decisions for themselves and their loved ones.

7.8  Other Strategies Giving families the choice empowers them at a difficult time in their lives and shows a sign of gratitude. This would be more likely to encourage families to consent to donation and increase the number of donors in the long run. Indeed, statistics show that when a specialist nurse for organ donation is involved in the decision process and the patient is known to be on the Organ Donor Register, the proportion of families who agree to organ donation raises to 92.6% (Nuffield Council on Bioethics 2017). This is of particular interest since qualitative research suggests that, in Germany, the responsible ICU doctor usually approaches the family and the transplant coordinator is rarely invited such discussions  (Becker et  al. 2020). Further evidence suggests that families are more likely to consent to donation if the discussion takes place in a quiet, private place (Gortmaker et al. 1998). This suggests that perhaps the focus should be shifted towards effective communication, which has the potential of keeping all parties content. However, these statistics include families who are already aware of their loved one’s wishes. Failure to inform the family

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shows a consequent increase in family refusal. This implies that organ donation campaigning should focus on encouraging donors to make their wishes known. NHS Blood and Transplant published statistics in 2016 indicating that only 47% of families consented to organ donation if they were not aware of their loved one’s wish to donate their organs (NHS Blood and Transplant 2016). This proportion increases to nearly 90% when this decision is known to the family. Recent empirical evidence in an integrated psychosocial study in Spain exploring bereaved relatives’ decision about organ donation also supports this claim. It showed that the strongest predictive factor of organ donation was the relatives’ beliefs about their loved one’s true wishes (López et al. 2018). A great emphasis is, therefore, placed on encouraging patients to discuss their decisions about organ donation with their family. Such conversations are more likely to happen particularly in the context of palliative care, where the family are heavily involved, potentially increasing the proportion of organ donations (NHS Blood and Transplant n.d-b).

7.9  Families’ Duty Towards Their Loved Ones After Death It is often regarded as the family’s final duty towards their loved one to ensure the proper burial or cremation of their body (Herring 2017, 412–471). This can be incredibly important to individuals, giving them a sense of closure and helping them process painful emotions. Removing tissue or organs of patients without their family’s consent can provoke feelings of violation, even when the deceased has already consented to organ donation. The Government Paper Human Bodies, Human Choices, which was further developed by the Chief Medical Officer in 2001 (Department of Health 2002), has highlighted the importance of dignity and respect towards the deceased individual and developing a sense of understanding towards their families. This involves ensuring informed consent has been carried out in a timely fashion without the family feeling under pressure to make a decision. It also involves maintaining cultural sensitivity, i.e. appreciating that different cultural or religious groups may have very different attitudes towards death and the use of organs. This recognises that the family’s views become more relevant once a patient has died. They are responsible for the disposal of the body and are the ones who will carry that burden, with all the emotions involved. Ultimately, they are also potential patients who need their welfare considered.

7.10  Redefining Death There is currently no recovery from brain death which makes donation after brainstem death possible. Recent scientific advances in neuroscience have stirred the scientific community and have indeed created a whole new set of questions about

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death, dying and consciousness within medical ethics. Nature published a paper in April 2019 showing that pig brain cells were revived hours after the animals were slaughtered. The pigs’ brains were removed from their host and the brains’ blood vessels were injected with a warm solution aimed to mimic cerebral blood flow. The research showed evidence of restored metabolic function and some neurons had retained their signal when electrical activity was applied to the tissue (Reardon 2019). While there was no co-ordinated brain activity which would indicate more sophisticated brain function, including consciousness, this experiment questions the whole concept of the irreversibility of death.

7.11  Conclusion Whether families should be able to veto their loved one’s decision to become an organ donor raises several ethical issues. A doctor’s duty to respect their patient’s wishes under the principle of autonomy and the duty to promote the wellbeing of patients in need of life-saving transplants support the argument that families should not be allowed to override the patient’s decision. Questions arise whether consent to organ donation is fully informed or not and whether consent is valid after death. Examples where patients’ decisions are respected after their death, such as their will or testament, support the patient’s autonomy. When looking at the wider context, families’ duty towards their patients and the potential emotional harm that could be inflicted on families may not warrant a decision to ignore their wishes. Those left behind can also be regarded as future patients, and their wellbeing must, therefore, be advocated. Promoting organ donation as an act of altruism can offer reassurance to families, whereas organ retrieval without consent can be regarded as violation and may instigate concerns that patients received suboptimal care. Families are ultimately responsible for the disposal of their loved one’s remains, which suggests that families should play an active role in how the body is treated. Effective communication has shown to significantly increase the proportion of families who consent to organ donation, therefore, a focus on providing the right environment for families when such discussions take place and involving a trained health-care professional would ensure that both patients and their families’ wishes are being equally respected. An emphasis on this should be made whether organ donation systems change from opt-in to opt-out, as opt-out systems have been shown to backlash when there is poor communication and the public have little trust. While exciting scientific research is showing the potential of brain restoration after death and raises interesting ethical questions, such studies are still in their most preliminary stage and a focus should be made to attempt to improve organ donation rates in the current global systems.

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References Beauchamp, T.L., and J.F. Childress. 2001. Principles of biomedical ethics. 5th ed. Oxford: Oxford University Press. Becker, F., et al. 2020. Optimizing organ donation: Expert opinion from Austria, Germany, Spain and the U.K. Annals of Transplantation 25: e921727-1. https://doi.org/10.12659/AOT.921727. Burroughs, Thomas E., et al. 1998. The stability of family decisions to consent or refuse organ donation: Would you do it again? Psychosomatic Medicine 60 (2): 156–162. https://doi. org/10.1097/00006842-­199803000-­00007. Chon, W.J., et al. 2014. When the living and the deceased cannot agree on organ donation: A survey of US Organ Procurement Organizations (OPOs). American Journal of Transplantation 14 (1): 172–177. https://doi.org/10.1111/ajt.12519. Csillag, Claudio. 1998. Brazil abolishes “presumed consent” in organ donation, October, 352, pp. 1998–1998. Delgado, Janet, et al. 2019. The role of the family in deceased organ procurement: A guide for clinicians and policymakers. Transplantation 103 (5): e112–e118. https://doi.org/10.1097/ TP.0000000000002622. Department of Health. 2002. Human bodies, human choices. The Law on human organs and tissue in England and Wales. A consultation report, pp. 1–190. Deutsche Stiftung Organtransplantation (DSO): Lebertransplantation. 2019. Available at: https:// dso.de/organspende/statistiken-­berichte/jahresbericht. Accessed: 1 Mar 2021. Deutsche Welle. 2018. German patients turn to Croatia for organ donations. Available at: https:// www.dw.com/en/german-­patients-­turn-­to-­croatia-­for-­organ-­donations/a-­42357468. Accessed 1 Mar 2021. ———. 2020. German parliament: Explicit consent still necessary from organ donors. Available at: https://www.dw.com/en/german-­parliament-­explicit-­consent-­still-­necessary-­from-­organ-­ donors/a-­52022245. Accessed 1 Mar 2021. Deutsches Referenzzentrum für Ethik in den Biowissenschaften. 1997.)The German Transplant Act (TPG). Available at: https://www.drze.de/in-­focus/organ-­transplantation/legal-­aspects. Accessed 1 Mar 2021. Faden, R.R., and T.L.  Beauchamp. 1986. A history and theory of informed consent. Oxford: Oxford University Press. Gillon, R. 1994. Medical ethics: Four principles plus attention to scope. BMJ 309 (6948): 184. https://doi.org/10.1136/bmj.309.6948.184. Gortmaker, Steven L., et  al. 1998. Improving the request process to increase family consent for organ donation. Journal of Transplant Coordination 8 (4): 210–217. https://doi. org/10.1177/090591999800800404. Grinyó, Josep M. 2013. Why is organ transplantation clinically important? Cold Spring Harbor Perspectives in Medicine 3 (6). https://doi.org/10.1101/cshperspect.a014985. Herring, Jonathan. 2017. Medical law & ethics. Oxford: Oxford University Press. Human Tissue Act. 2004. Human Tissue Act. Available at: http://www.legislation.gov.uk/ ukpga/2004/30/part/1. Accessed 6 Feb 2018. Lidz, C.W., et al. 1984. Informed consent: A study of decisionmaking in psychiatry. New York: Guilford Press. López, Jorge S., et al. 2018. Bereaved relatives’ decision about deceased organ donation: An integrated psycho-social study conducted in Spain. Social Science and Medicine 205 (June 2017): 37–47. https://doi.org/10.1016/j.socscimed.2018.03.039. Moraes, Edvaldo Leal de, and Maria Cristina Komatsu Braga Massarollo. 2009. Recusa de doação de órgãos e tecidos para transplante relatados por familiares de potenciais doadores. Acta Paulista de Enfermagem 22 (2): 131–135. https://doi.org/10.1590/S0103-­21002009000200003.

7  Should the Family Be Allowed to Override a Patient’s Decision to Become an Organ… 119 NHS Blood and Transplant. 2016. Families saying no to donation results in missed transplant opportunities for UK patients. Available at: https://www.organdonation.nhs.uk/news-­and-­ campaigns/news/families-­saying-­no-­to-­donation-­results-­in-­missed-­transplant-­opportunities-­ for-­uk-­patients/. Accessed 6 Feb 2018. ———. 2019. Organ donation and transplantation. Activity report 2018/2019, pp. 76–86. ———. n.d.-a. No Title. Available at: https://www.organdonation.nhs.uk/. Accessed 6 Feb 2018. ———. n.d.-b. Why it is important to have the organ donation conversation. Available at: https:// www.nhsbt.nhs.uk/get-­involved/promoting-­donation-­hub/key-­messages-­and-­information/ organ-­donation-­conversation/. Accessed 6 Feb 2018. Nuffield Council on Bioethics. 2017. Ethics think tank calls for discussion around wishes for organ donation before and after death, and robust evidence before any legal change is considered – Nuffield Bioethics. Available at: http://nuffieldbioethics.org/news/2017/ethics-­tank-­ calls-­discussion-­wishes-­organ-­donation-­death. Accessed 6 Feb 2018. Reardon, Sara. 2019. Pig brains kept alive outside body for hours after death. Nature 568 (7752): 283–284. https://doi.org/10.1038/d41586-­019-­01216-­4. Rodrigue, J.R., D.L.  Cornell, and R.J.  Howard. 2008. The instability of organ donation decisions by next-of-kin and factors that predict it. American Journal of Transplantation 8 (12): 2661–2667. https://doi.org/10.1111/j.1600-­6143.2008.02429.x. Scholz, Nicole. 2020. Organ donation and transplantation. Facts, figures and European Union action. Available at: https://www.europarl.europa.eu/RegData/etudes/BRIE/2020/649363/ EPRS_BRI(2020)649363_EN.pdf. Accessed 19 May 2021, p. 12. Sharif, Adnan, and Greg Moorlock. 2018. Influencing relatives to respect donor autonomy: Should we nudge families to consent to organ donation? Bioethics 32 (3): 155–163. https://doi. org/10.1111/bioe.12420. Shaw, David, and Dale Gardiner. 2018. Increasing organ donation rates by revealing recipient details to families of potential donors. Journal of Medical Ethics 44 (2): 101–103. https://doi. org/10.1136/medethics-­2017-­104262. Stuart, Frank P., Frank J. Veith, and Ronald E. Cranford. 1981. Brain death laws and patterns of consent to remove organs for transplantation from cadavers in the United States and 28 other countries. Transplantation 31 (4): 238–244. https://doi.org/10.1097/00007890-­198104000-­00002. UK Donation Ethics Committee. 2016, April. Involving the family in deceased organ donation. Academy of Medical Royal Colleges. Weale, Albert. 2011. Human bodies – Donation for medicine and research. Nuffield: Council on Bioethics. Wilkinson, T.M. 2011. Ethics and the acquisition of organs (p. 45). Oxford: Oxford University Press. Natalia Kyrtata  graduated from Lancaster Medical School with a degree of Bachelor of Medicine and Bachelor of Surgery in 2018. She completed a Master of Science at the University of Sheffield in Clinical Neurology in 2017. Dr. Kyrtata is currently working as a clinical academic doctor at the University Hospitals of Morecambe Bay Trust in Lancaster, UK. Her research interests lie in the field of clinical neurology and biomedical ethics.

Chapter 8

Comparison of Self-Assessed Competencies Regarding End-of-Life Ethics between Physicians and Nursing Staff Survey Findings from the Unfallkrankenhaus Berlin Andreas Mues, Tobias Weise, and Axel Ekkernkamp

8.1  Introduction Basic medical ethics teaching given to medical and vocational nursing students in Germany should ensure that they are capable of ethical reflection, as well as analysis and assessment. This should provide both professional groups with the ethical competencies they need in their everyday working lives. These skills are a central prerequisite for making ethical decisions in practice and providing a personal sense of security when making difficult decisions. The legal basis for the medical ethical training of physicians in Germany is the licence to practice medicine for doctors from 27 June 2002 (Federal Law Gazette I p. 2405). It states in Sect. 1 on the objectives and the structure of medical training that “[t]he medical training [...] is carried out on a scientific basis and is practical and patient-related. [...] It should convey the intellectual, historical and ethical foundations of medical behaviour based on the current state of research” (Bundesministerium für Gesundheit 2002, own translation). In addition, Section 27 for admission to the second section of the medical examination lists the A. Mues (*) Film University Babelsberg KONRAD WOLF, Potsdam, Germany T. Weise Freie Universität Berlin, Berlin, Germany e-mail: [email protected] A. Ekkernkamp Department of Trauma and Reconstructive Surgery and Rehabilitative Medicine, Medical University Greifswald, Greifswald, Germany BG Hospital/Trauma Center Unfallkrankenhaus Berlin gGmbH, Berlin, Germany e-mail: [email protected] © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_8

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cross-­sectional area “History, Theory, Ethics of Medicine” (GTE), in which a proof of performance is mandatory. Thus, the type and scope of ethical training in the study of human medicine in Germany are only regulated in a rudimentary manner and depend, to a large extent, on the institution that carries out the training and the individual willingness of the learners to perform extracurricular learning. The board of the Academy for Ethics in Medicine submitted a corresponding implementation proposal to the medical faculties in 2003 to clarify the content-related aspects of the field of medical ethics (Biller-Andorno et al. 2003) and differentiates between general and specific learning objectives. These are: General teaching objectives: 1. Medical-ethical knowledge requires the following basic knowledge: • Familiarity with the tasks of ethics, relationship between morality, ethics, politics and law, including their historical and social dimensions • Familiarity with basic moral-philosophical concepts, different ethical conceptions and models of moral judgment • Knowledge of relevant laws, guide-lines and codes 2. Basic skills and abilities include to: • Develop sensitivity regarding the moral dimensions of action in medicine • Reflect on, further develop and represent one’s own moral positions • Recognise and consider the perspectives and interests of other participants including other professional groups in the health-care sector • Know and be able to use decision-making methods • Be able to ethically justify, communicate and implement decisions • Be able to use the possibilities of obtaining information in medical ethics 3. Basic medical attitudes include: • • • •

A willingness to take responsibility Respect and tolerance Care, empathy and compassion Intellectual honesty, truthfulness and reliability

Special teaching goals: 1. Patient autonomy, education and consent 2. Relationships between patients, doctors, nurses and relatives 3. Medical research 4. Medicine and reproduction 5. Medicine and genetics 6. Paediatric and adolescent medicine 7. Mental illnesses and intellectual disabilities 8. Transplant medicine 9. End-of-life care and euthanasia 10. Health care 11. Responsibility and self-image of doctors and students” (Biller-Andorno et al. 2003, 120–121, own translation).

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The special learning objectives 1 and 2 as well as 9–11 are considered to be relevant for almost every medical activity and, thus, for a wide range of medical professionals. A nationwide survey of medical training institutions regarding GTE was carried out in 2014. Twenty of the 24 institutions in this study applied the recommendations of the Academy for Medical Ethics listed above to design their medical ethical learning goals. The average teaching load in GTE was 2.18 semester hours per week, with an average share of medical ethics of 49.9%, which corresponds to approximately 11.22 h of teaching in total (2.18 contact hours per week × 14 semester weeks  ×  0.75  h  ×  49.9%). The challenges for GTE teaching most frequently mentioned were a lack of personnel and the insufficient total amount of time to focus on the actual teaching goals (Schildmann et al. 2017). Furthermore, a cross-­ sectional study of students enrolled in their first, third and eighth semesters of human medicine and their practical year in 2009/10 concluded that the majority of those questioned had little knowledge of the cross-sectional areas of GTE, although they were very interested in medical ethics. Moreover, during the course of their studies, the student’s motivation for acquiring GTE competencies changed from the desire to help others to that of appropriate job security (Strube et al. 2011). In addition, a 2010 survey among Bavarian doctors also provides hints of the inadequate knowledge of medical ethics, particularly in the areas of indirect euthanasia and patient will, so that the authors concluded: “We found their knowledge of medical ethics to be inadequate. Competence in medical ethics needs to be strengthened by more ethical teaching in medical school, speciality training, and continuing medical education” (Wandrowski et al. 2012, 141). In contrast to training for physicians, the basis for the medical-ethical training of nurses in Germany is the Nursing Act of 16 July 2003 (Federal Law Gazette I p. 1442–1458), including the “Training and Examination Ordinance for the professions in nursing” of 10 November 2003 (Federal Law Gazette I p. 2263–2273). Appendix 1 to Sect. 1 Paragraph 1 of the Training Ordinance states under point 5 that: The students must be empowered to • consider, in particular, the right to self-determination and the individual situation of the persons being cared for, and • include the social environment of the people to be cared for in their care activities, to take ethnic, intercultural, religious and other group-specific aspects as well as fundamental ethical issues into account. (Federal Law Gazette I p. 2269, own translation). A total of 300 h of ethics-related knowledge in the humanities and social sciences must be completed; 200 additional hours are available for distribution across a total of four different other areas of knowledge. Medical-ethical training, to a large extent, depends on the training institution and the individual student’s willingness to perform extracurricular learning. The exact syllabuses are further specified by the respective federal states within the framework of the corresponding state syllabuses and, of course, cross-medical topics such as ethics can also be further deepened in

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other subject areas, which, in turn, increases the dependency on individual teachers and institutions. In 2016, the Academy for Ethics in Medicine proposed a list of comprehensive and essential target dimensions from which corresponding competence-based learning goals can be derived. These target dimensions are: • Knowledge of the ethical foundations of professional action; • Sensitivity to ethical conflict situations in everyday care as well as in the context of institutional and social developments: • The identification and analysis of concrete ethical questions; • Empathy and the ability to change perspectives; • Discourse and conflict abilities as well as consensus orientation in the exercise of responsibility as a professional nurse; and • Reflection and justification of professional activity including ethical norms of nursing and other health professions. (Riedel et al. 2016, own translation). A first cross-sectional examination of nursing school students in Berlin and Fürth showed at least an increase in ethical knowledge in the course of the training programme (Strube et al. 2014), but the systematic educational reporting in the area of nursing in Germany is still in its infancy (Slotala and Ewers 2012) and further research is needed. International studies demonstrate that ethics teaching at medical schools is in generally viewed positively (Al Mahmoud et  al. 2017) and that an integrated form of teaching within small groups might be promising (Mattick and Bligh 2006). However, also negative effects on the moral competence level of medical and nursing students have been described (Martins et al. 2020).With this paper, we try to add to this growing but still small body of knowledge. Using a single case study of a regional hospital in Berlin, we aim to analyse how successful current standard training programmes are in creating ethically competent professional physicians and nurses, with a particular focus on EoL ethics. In summary, we find that decision situations requiring ethical reasoning are common for both nurses and physicians. Regarding EoL ethics, we see significantly higher levels of self-reported ethical knowledge in physicians than in nurses. Yet, at the same time, nurses feel significantly more burdened by this and other kinds of ethical decision-making than physicians. Overall, we find that additional training programmes should be offered to balance gaps in knowledge acquisition formed by the officially required professional training and study curricula.

8.2  Methods This paper is based on a survey conducted with all employees at the Unfallkrankenhaus Berlin (ukb) by the Berlin Research Centre for Ethics. The initial aim of the survey was to design and offer a series of tailor-made training courses on ethics for the employees. Through various discussions at several events at the hospital, we formed the starting hypothesis that the majority of doctors and nurses do not feel

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well-prepared for clinical practice regarding ethical issues. The training programme was intended to discuss ethical challenges of a professional’s daily life in a role-­ specific and competence-oriented manner. In January 2016, the project outline and a first draft survey were developed together with the ukb medical director. In April 2016, relevant decision makers (chief physicians, ward heads of nursing staff and other professional groups) were informed about the project. Over the following year, the project received approval from the data security officer and the director of nursing staff with several changes in the questionnaire (e.g. a set of questions regarding psychological items was deleted to limit the response time to 10 min). A short pretest was also carried out by five physicians and five nurses each to test the comprehensibility and technical reliability of the online questionnaire tool, which resulted in minor changes regarding vocabulary and sentence structure. The main goal of the survey project was not a scientific but a practice-oriented one, so the questionnaire was developed by the project manager and first author of this article as a tool for a limited purpose. Since there was no database of existing medical ethical competencies or previous training courses of ukb staff, it was first necessary to identify existent levels of knowledge, differentiated by professional groups (e.g. physicians, nursing staff, administrative personnel), to get a starting point for the development of specific training programmes. After several discussions with employees from different professional groups at ukb, it became clear that a formal assessment would not be accepted by hospital staff. In particular, any kind of ‘examination-like settings’ were rejected because of the additional stress in the daily routine. As a result, the survey was designed as a self-assessment. The survey was conducted from May to September 2017. It was sent by the ukb IT Directorate to all employees of the hospital. After the first invitation to participate on 5 May 2017, a total of 84 questionnaires were completed in full, while another 89 questionnaires were filled out completely in the period after a reminder e-mail had been sent on 17 July 2017. Over the entire term, the survey was additionally begun by 86 participants, but stopped prematurely, so that no data could be collected. A total of 1785 employees of the ukb were addressed. Only the data of the nurses and physicians are analysed for this paper. The questionnaire consists of two parts. In the first part, the following socio-­ demographic data were collected as multiple-choice questions: • • • • • •

Age Sex Religious Affiliation Family Status Vocational Education / Academic Studies Professional Experience

It was important for the development of the later training programmes to know how old the later participants were, whether and to what religion they belonged, and what level of education they had to get a better feeling for appropriate didactic approaches, the possible participation of pastoral care in the later training

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programmes and the level of complexity of this training in general. In addition, it was useful to know whether they addressed primarily very experienced or inexperienced participants. The following data were collected in the second part of the survey: • Frequency of ethically relevant situations in the clinical daily routine in general and in specific areas (the answer format is “situations per month” in the following areas: ethical theory, beginning of life/reproductive medicine, EoL ethics, euthanasia, patient autonomy, justice in health care/allocation) • individual qualification level in medical ethics in general and in specific areas (see above) • origins of these qualifications (the answer format is: vocational training [nurses], academic studies [physicians], discussion with superiors, discussion with colleagues, advanced training, professional experience, self-studies) • perceived pressure or burden caused by ethical decisions • perceived feeling of urgency for specific advanced training in general and in specific areas (see above) • individual solution strategies in ethical decision-making (the answer format is: discussion with superiors, discussion with colleagues, ethical consultations, discussion with friends and family, own research) The questionnaire finished by asking the location, the comprehensibility of the questionnaire and an opportunity to give open feedback. It was preceded by a cover sheet that informed the participants about the content and purpose of the survey, the assurance of complete anonymity of the data collected and the contact details of the author for questions.

8.3  Results 8.3.1  Sample, Comprehensibility and Return Rate Of the medical professionals surveyed, 72.6% are male and 27.4% are female. The respondents are between 26 and 63  years old (M  =  43.48, standard deviation: SD = 9.632) and self-identify as Christian (= 48.4%) or without religious affiliation (= 51.6%). A small majority is married (= 54.8%), the remainder unmarried (= 43.5%), with only one divorced person (= 1.6%) in the sample. The duration of professional experience varies between 1 and 35 years (M = 15.2, SD = 9.969). Of the respondents of the nursing profession, 40.9% are male and 59.1% are female. The respondents are between 27 and 62 years old (M = 44.8, SD = 9.1) and identify as Christian (= 20.5%), Buddhist (= 2.3%), or are without religious affiliation (= 77.3%). The majority of the respondents are married (= 59.1%), the rest are single (= 27.3%) or divorced (= 13.6%). The nurses’ duration of professional experience has a range from 6 to 44 years (M = 23.23, SD = 10.466).

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The participating physicians rate the comprehensibility of the questionnaire with “complete” (46.77%), “very” (37.1%) or “fairly” (14.52%) (values 5, 4 and 3 on a unipolar 5-point Likert scale) and the participating nurses rate the comprehensibility of the questionnaire with “complete” (45.45%), “very” (29.55%) or “fairly” (25%). In summary, the questionnaire was perceived as comprehensible by most respondents. Of the 1785 employees, 364 are physicians and 652 are nurses. The overall return rate was 9.7% (n = 173), with 17% for the physicians (n = 62) and 6.8% for the nurses (n = 44). After conducting the survey, discussions with staff revealed that the low return rate of nurses was partially caused by this group’s limited use of their professional e-mail addresses. Those are usually used only to sign into the hospital learning system and are only sporadically checked after that.

8.3.2  Frequency of Ethically Relevant Decision Situations In the survey, data on the frequency of ethical decision situations per month are collected for the overall perceived frequency of those situations in general and for the frequency of those situations in the specific areas “beginning of life/reproductive medicine”, “EoL/euthanasia”, “patient autonomy” and “justice/allocation in health care”. Figure 8.1 illustrates the data on the frequency of ethically relevant decision situations in the area of EoL ethics compared with other areas. The reported frequencies of situations for these four issue areas were summed up per respondent to determine whether their sum corresponds to the respondents’ assessment regarding ethical decision situations in general. We find a much higher number of decision situations when summing up the topic-specific responses. The median physicians

Fig. 8.1  Frequency of ethical decision situations per month for physicians and nurses in the areas of end-of-life (EoL) ethics, patient autonomy and justice in the health-care system

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reported 10 relevant situations per month (SD = 9.897, average = 12.47). If asked regarding specific issue areas, the median increases to 13. The nursing staff had a median of 5 medical ethically relevant situations per month and a median of 8.5 when adding up decision situations for specific issue areas. We interpret this increased number of decision situations when summing up individual answers as an effect of the respondents systematically underestimating ethical decision situations they are confronted with when asked in general. When reflecting their exposal to the individual issue areas of medicine ethics, they appear to report more realistic situation counts. The subject of EoL ethics becomes relevant an average of twice a month for the responding nurses and five times a month for physicians. Thus, ‘EoL ethics’ decisions, together with those regarding patient autonomy, were the most common decision situations with ethical implications for both groups.

8.3.3  Ethical Knowledge in the Area of End-of-Life Ethics Figure 8.2 illustrates that approximately 50% of the nurses and 30% of the physicians do not feel well-qualified to handle ethical issues, thus, indicating a general need for specialized ethics training programmes, especially for nurses. In the field of EoL ethics, approximately 58% of physicians characterise their individual level of knowledge as high or extremely high. Approximately 26% of nurses gave the same assessment, meaning there is a difference of over 30 percentage points, as shown in Fig. 8.3 and, thus, again underlining the group-specific differences discussed above. Furthermore, EoL ethics is the only issue area in the

Fig. 8.2  Perceived general qualification levels in medical ethics of nurses and physicians

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Fig. 8.3  Self-reported ethical knowledge in the area of EoL ethics for nurses and physicians

survey with a statistically significant difference between the two professional groups (Fisher’s exact test α = 0.049  5 is not fulfilled, Fisher’s exact test is used to determine the statistical significance at a 0.05 level.

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Fig. 8.4  Self-reported amount of ethical content in medical training of physicians

Fig. 8.5  Self-reported amount of ethical content in vocational training for nurses

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Fig. 8.6  Self-reported knowledge acquisition through vocational training/medical studies for the different issue areas

54% of physicians and 47% of nurses gained at least some of their knowledge of EoL ethics from their studies or vocational training (see Fig. 8.6). Compared to their self-reported knowledge in EoL ethics (Fig.  8.3), it is likely that other forms of knowledge acquisition must also exist.

8.3.5  B  urden of Ethical Decision-Making and Urgency for Further Education The self-assessment regarding the individual burden of ethical decision-making in the context of professional activity is shown in Fig.  8.7. Since ethical decision-­ making situations occur frequently and the solution strategies that concern them are only a rudimentary part of the standard training programmes of both professions, it is likely that both groups are burdened with medical ethical decision-making situations as part of their daily work. However, this cannot be confirmed based on the analysis presented in Fig. 8.7 . Although 25% of the nurses characterise their stress as “very” (= 4) on a unipolar 5-step Likert scale, 13.64% also feel “barely” stressed and 61.36% chose the attribute “quite” (= 3) and, thus, the neutral option. Physicians feel statistically significantly less burdened by ethical decisions. A total of 56.45% of the responding physicians feel “barely” or “not at all” burdened with ethical decision-making tasks, and 35.48% report that they are “quite” burdened. However, the results of the survey also clearly show that, irrespective of the experienced burdens, the need for corresponding further qualifications is considered high (see Fig. 8.8). A total of 63.64% of nurses characterise their individual need for further training as “very” (= 40.91%) or “in the highest degree” (= 22.73%). Of the

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Fig. 8.7  Self-reported burden of ethical decision-making of nurses and physicians

Fig. 8.8  Self-reported urgency for further ethical education of nurses and physicians

physicians, only 40.32% chose these answers (“very”  =  22.58%, “in the highest degree” = 17.74%). The personal feeling of urgency regarding further ethical qualifications is, therefore, more pronounced in the nursing profession than in the group of physicians. Yet, both groups address a wish for additional ethical training.

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Fig. 8.9  Self-reported desire for further education in EoL ethics for nurses and physicians

Compared with the other areas of the survey, EoL ethics is the issue area where both groups wish for more training most strongly and consistently (see Fig. 8.9). Thus, the sense of urgency regarding further qualifications in the field of EoL ethics is at a high level for both professions, while the level of stress and over-reliance is moderate. This indicates additional motives for the desire for further qualification in this field.

8.4  Discussion The ethical challenges in modern hospitals such as the ukb are extensive and diverse for both the nursing staff and the physicians and especially EoL ethical decision situations are relevant for both groups. These results also correspond to earlier studies from other countries such as Italy or Croatia (Leuter et al. 2018; Sorta-Bilajac et al. 2011). Furthermore ethical decision-making is perceived as more stressful by the nurses than the physicians which also conforms with other studies from countries like Canada or the USA (Dodek et al. 2016; Epstein et al. 2019; Henrich et al. 2017; Whitehead et al. 2015). The feeling of urgency for more qualification, especially in the field of EoL ethics, is high for both groups. The state-regulated training programmes for both groups should, thus, be analysed further to identify possible optimisation potential. Physicians assess their level of knowledge of EoL ethics significantly higher than the nursing staff, hinting at some qualitative differences in their training programmes. However, 45% of the physicians and 52% of the nurses

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did not acquire their knowledge through their course of studies or vocational training. Therefore, alternative practises of knowledge acquisition for these two professional groups appear to exist in addition to the mandatory courses for nurses and physicians. These practises should be researched further and could highlight avenues for the development of customized training programmes for all physicians and nurses at this specific hospital and German hospitals in general. Furthermore, EoL ethics is the field most desired for further education programmes by both professional groups. These findings are not very surprising given that the nature and extent of the ethical training components in both medicine and nursing vocational training are regulated in Germany only in a rudimentary manner. The overall hourly quota for ethical training in both professional education programmes is low. Which is especially in the education of physicians in medical schools not a unique German challenge like results from the UK indicate (Brooks and Bell 2017).The results presented here should, however, be interpreted in the unique context of the ukb. The ukb specializes in emergency patients, thus, hinting at a higher rate of possible EoL decisions. This specialization of the hospital could correlate with a special motivational orientation of the doctors and nursing staff working there. The examination of the extent to which this particular profile affects the results in relation to the other topics remains reserved for further research. Furthermore, it should be noted that the type of question regarding the general qualification in medical ethics from Fig. 8.2 also plays a role here. It became clear during the data analysis and further discussions with respondents that the classification “best qualified” caused irritation in some respondents, since situations for which one feels “best qualified” can be estimated as very rare. Therefore, the attribute “adequately qualified” should be chosen for the planned follow-up surveys, since it reflects the basic intention of the question better and offers less scope for interpretation. Similarly, the data on professional experience show that most of the doctors surveyed were probably not yet trained in accordance with the 2002 medical licensing regulations in which the ethical components of the studies of human medicine in Germany were reorganised. However, since a direct entry into the profession after graduation cannot necessarily be assumed, it is not possible to allocate the valid licensing regulations precisely based on the years of service. In view of the only marginal proportion of compulsory medical ethics shares in the new regulations of 2002 compared to the previous version, the effects are likely to be low. The possible effects of special reform programmes in the studies of medicine which are running at various universities in Germany were also not surveyed here, so their potential influence could not be analysed in this article. Despite the limitations listed here and possible distortions caused by the survey design, the results indicate that the quantitative and qualitative knowledge transfer of medical ethics within the framework of regular training in the areas of nursing and human medicine may fall short of the goals set. Therefore, both a quantitative increase in medical-ethical training and an intensification of these in the context of cross-sectional topics in other subject groups should be discussed. In the training sessions designed for the ukb, discourse and dialogue-oriented training formats

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seem to be especially suitable for both professions. They could directly link to the forms of knowledge acquisition already practised and established by combining the exchange with colleagues and superiors in moderated discussions. This could reduce the need for self-research on theoretical questions and also actively integrate the existing professional experience of colleagues in the ongoing medical-ethical qualification process.

References AlMahmoud, T., M.J. Hashim, M.A. Elzubeir, and F. Branicki. 2017. Ethics teaching in a medical education environment: Preferences for diversity of learning and assessment methods. Medical Education Online 22: 1328257. https://doi.org/10.1080/10872981.2017.1328257. Biller-Andorno, N., G.  Neitzke, A.  Frewer, and C.  Wiesemann. 2003. Lehrziele ‘Medizinethik im Medizinstudium’. Ethik in der Medizin 15: 117–121. https://doi.org/10.1007/ s00481-­003-­0224-­7. Brooks, L., and D.  Bell. 2017. Teaching, learning and assessment of medical ethics at the UK medical schools. Journal of Medical Ethics 43: 606–612. https://doi.org/10.1136/ medethics-­2015-­103189. Bundesministerium für Gesundheit. 2002. Approbationsordnung für Ärzte vom 27. Juni 2002 (BGBl. I S. 2405), die zuletzt durch Artikel 5 des Gesetzes vom 17. Juli 2017 (BGBl. I S. 2581) geändert worden ist. http://www.gesetze-im-internet.de/_appro_2002/. Accessed 25 Feb 2020. Dodek, P.M., H. Wong, M. Norena, N. Ayas, S.C. Reynolds, S.P. Keenan, A. Hamric, P. Rodney, M. Stewart, and L. Alden. 2016. Moral distress in intensive care unit professionals is associated with profession, age, and years of experience. Journal of Critical Care 31: 178–182. https:// doi.org/10.1016/j.jcrc.2015.10.011. Epstein, E.G., P.B. Whitehead, C. Prompahakul, L.R. Thacker, and A.B. Hamric. 2019. Enhancing understanding of moral distress: The measure of moral distress for health care professionals. AJOB Empirical Bioethics 10: 113–124. https://doi.org/10.1080/23294515.2019.1586008. Henrich, N.J., P.M.  Dodek, E.  Gladstone, L.  Alden, S.P.  Keenan, S.  Reynolds, and P.  Rodney. 2017. Consequences of moral distress in the intensive care unit: A qualitative study. American Journal of Critical Care 26: e48–e57. https://doi.org/10.4037/ajcc2017786. Leuter, C., C. Petrucci, V. Caponnetto, C. La Cerra, and L. Lancia. 2018. Need for ethics support in clinical practice and suggestion for an Ethics Consultation Service: Views of Nurses and physicians working in Italian healthcare institutions. Annali Dell’Istituto Superiore Di Sanita 54: 117–125. https://doi.org/10.4415/ANN_18_02_07. Martins, V.S.M., C.M.N.C. Santos, P.U.R. Bataglia, and I.M.R.F. Duarte. 2020. The teaching of ethics and the moral competence of medical and nursing students. Health Care Analysis 29 (2): 113–126. https://doi.org/10.1007/s10728-­020-­00401-­1. Mattick, K., and J.  Bligh. 2006. Teaching and Assessing medical ethics: where are we now? Journal of Medical Ethics 32: 181–185. https://doi.org/10.1136/jme.2005.014597. Riedel, A., J.  Behrens, C.  Giese, M.  Geiselhart, G.  Fuchs, H.  Kohlen, W.  Pasch, M.  Rabe, and L.  Schütze. 2016. Zentrale Aspekte der Ethikkompetenz in der Pflege: Empfehlungen der Sektion Lehrende im Bereich der Pflegeausbildung und der Pflegestudiengänge in der Akademie für Ethik in der Medizin e. V.  Ethik in der Medizin 29: 161–165. https://doi. org/10.1007/s00481-­016-­0415-­7. Schildmann, J., F. Bruns, V. Hess, and J. Vollmann. 2017. ‘History, theory and ethics of medicine’: The last ten years. A survey of course content, methods and structural preconditions at twenty-­ nine German medical faculties. GMS Journal for Medical Education 34: Doc23. https://doi. org/10.3205/zma001100.

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Slotala, L., and M. Ewers. 2012. Bildungsberichterstattung in der Pflege. Pflege & Gesellschaft 178: 63–78. Sorta-Bilajac, I., K. Baždarić, M. Brkljačić Žagrović, E. Jančić, B. Brozović, T. Čengić, S. Ćorluka, and G.J. Agich. 2011. How nurses and physicians face ethical dilemmas—The Croatian experience. Nursing Ethics 18: 341–355. https://doi.org/10.1177/0969733011398095. Strube, W., M. Pfeiffer, and F. Steger. 2011. Moralische Positionen, medizinethische Kenntnisse und Motivation im Laufe des Medizinstudiums – Ergebnisse einer Querschnittsstudie an der Ludwig-Maximilians-Universität München. Ethik in der Medizin 23: 201–216. https://doi. org/10.1007/s00481-­011-­0119-­y. Strube, W., M. Rabe, J. Härlein, and F. Steger. 2014. Gesundheitsethische Kenntnisse im Verlauf der Pflegeausbildung  – Ergebnisse einer Querschnittsstudie in Deutschland. Ethik in der Medizin 26: 225–235. https://doi.org/10.1007/s00481-­013-­0250-­z. Wandrowski, J., T. Schuster, W. Strube, and F. Steger. 2012. Medical ethical knowledge and moral attitudes among physicians in Bavaria. Deutsches Ärzteblatt International 109: 141–147. https://doi.org/10.3238/arztebl.2012.0141. Whitehead, P.B., Herbertson, R.K., Hamric, A.B., Epstein, E.G., and Fisher, J.M. 2015. Moral distress among healthcare professionals: Report of an institution-wide survey. Journal of Nursing Scholarship: An Official Publication of Sigma Theta Tau International Honor Society of Nursing 47(2): 117–125. https://doi.org/10.1111/jnu.12115. Andreas Mues  is the Provost of the Film University Babelsberg KONRAD WOLF.  He completed his studies in philosophy, sociology and German linguistics at the Humboldt University in Berlin and at the Universidad Complutense de Madrid. He received his doctorate degree from the University of Greifswald and his academic focus is on applied ethics. Tobias Weise  is Assistant to the Provost of Freie Universität Berlin. In 2016, he was awarded a doctoral degree in Political Science from the University of Bremen for his thesis ‘Participation and Transparency in Intergovernmental Security Organizations. Resource and Norm Driven Opening in the IAEA and OPCW’. Before joining Freie Universität Berlin, Weise was Marketing and Communications Manager at Deutsche Hochschule für Gesundheit und Sport, Berlin, and a research associate at the University of Bremen and the University of St. Gallen. Axel Ekkernkamp  is the Medical Director and General Manager of the Unfallkrankenhaus Berlin and Director of the Clinic and Polyclinic for Trauma and Reconstructive Surgery and Rehabilitative Medicine at the Greifswald University Hospital. Since 1999 he has a full professorship and chair in trauma surgery at the University of Greifswald. He is also chair of the supervisory board of the SRH Holding and the scientific advisory council of the German University of Health and Sports.

Chapter 9

Blurring Boundaries at the End of Life in Home Care: A Look at Germany, Switzerland and the United Kingdom in the Light of Care Ethics Mara Kaiser, Eva Kuhn, Christopher Poppe, and Henrike Voß

9.1  Introduction Demographic change in Western societies has been exerting considerable influence on the health system as a result of the increase in the overall ageing population. Due to demographic change, the dependency ratio of older people in need of help to younger people providing this help is changing drastically. It was already foreseeable in 2005 that “the current and future provision and maintenance of a broad-­ based and differentiated range of social and health-related services as well as the supply and demand for nursing care in Germany and other countries will be influenced by critical demographic and labour market trends” (Meyer 2005, 10, translation by the authors). Informal care by family and friends represents an essential pillar in the care landscape. Economically and socially, informal care is “a basic condition for the functioning of the organised health care system” (ter Meulen and

Mara Kaiser, Eva Kuhn, Christopher Poppe and Henrike Voss contributed equally to this chapter. M. Kaiser Philosophical-Theological University of Vallendar (PTHV), Vallendar, Germany E. Kuhn Section Global Health, Institute for Hygiene and Public Health, University Hospital Bonn, Bonn, Germany e-mail: [email protected] C. Poppe (*) Institute for Biomedical Ethics, University of Basel, Basel, Switzerland e-mail: [email protected] H. Voß Institute of Gerontology, Heidelberg University, Heidelberg, Germany e-mail: [email protected] © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_9

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van der Made 2000, 257). In Germany, more than three quarters (76% or 2.59 million) of all those in need of long-term care (LTC) are cared for at home, of which 1.76 million are cared for exclusively by their relatives (Destatis 2018). In the United Kingdom (UK), the monetary value of the informal care provided equals between £57 and £100 billion (62–109 billion Euros) in professionals’ working hours per year (Houses of Parliament 2018). An estimated 60% of all care in European countries is provided informally (Genet et  al. 2012, 63). Informal caregivers are defined by the Organisation for Economic Co-operation and Development as “people providing any help to older family members, friends and people in their social network, living inside or outside of their household, who require help with everyday tasks” (OECD 2017, 208). This help at the end of life (EOL) usually covers all activities of daily living (ADL), including instrumental (e.g. household chores, shopping) and basic (e.g. self-care tasks, nursing) ADL.  Informal caregivers, especially in EOL situations, also, for example, administer medication, maintain a tracheostomy or dress wounds. The latter tasks in particular explicitly demonstrate the blurring of boundaries between professional/formal and family/informal care (McDonald et al. 2017). Questions of responsibility emphasise the Care Ethical approach of self- and other-care. The conflicts between self and other care occur against the background of care work and are understood as boundaries that get blurred within informal caregiving. Consequently, the aim of this international comparison is to examine informal caregiving and its blurring of boundaries against the background of Care Ethics. Our analysis highlights three particular blurred boundaries of informal care: 1 . between having the role of the informal caregiver and not having it, 2. between informal (family) and formal (professional) care, and 3. between caring for others (other-care) and needing care for oneself (self-care). This warrants explication. After providing a descriptive comparison of support structures in Switzerland, Germany and the UK, Sect. 9.3.1 sets out how blurred the process of becoming an informal caregiver in the context of dementia is. In Sect. 9.3.2, the boundary between informal and formal care is discussed. More specifically, the employment of Swiss informal caregivers by the state blurs the status of informal care. Lastly, informal caregiving is not as one-sided as the term caregiving suggests. The person giving care, this section maintains, is also most likely in need of receiving care. This section, therefore, weaves a tight narrative of how the role of informal caregivers is blurred in relation to certain other roles: the role of a noncaregiving other, the professional role and the care recipient’s role. The cases in Sect. 9.3 serve as reference points and are discussed in the context of Care Ethics. Care Ethics is instructive to highlight and cohere blurred boundaries, especially in the tension of self- and other-care as well as collaboration and co-­operation between professionals and informal caregivers. The article particularly emphasises trust as the underlying ethical attitude of caregiving. It points to the necessity of the formation of care networks and highlights the need to increase public and political awareness of informal caregiving.

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Our analysis is integrated into the international and interdisciplinary discussion on nursing ethics and professional ethics.1 The specific situation of double-duty caregivers (Ward-Griffin et  al. 2015) and volunteers engaging with terminally ill patients and their relatives (Sévigny et al. 2010) is beyond the scope of this article.

9.2  Legal and Theoretical Background A comparison of the support structures of Switzerland, Germany and the UK is instructive, as these countries each follow a welfare state regime (Zigante 2018, 14). They face a great demographic and societal challenge: people are living longer and the population of 65  years and over is growing faster than any other age group (United Nations 2019). As public resources for LTC are scarce, a ‘care gap’ is created and informal caregivers subsequently step in (Zigante 2018, 23). The three countries have concurrently set up different support structures and pursue distinct policy strategies.

9.2.1  C  omparison of Support Structures in Germany, Switzerland and the United Kingdom In Germany, the situation of care recipients has improved since the introduction of the two LTC Strengthening Acts (PSG I & II). They specifically guarantee insurance benefits and extended support in ADL. With the aim of reconciling work and informal caregiving, the Home Care Leave Act grants employees paid absence from work to care for a close relative. The exemption can be full- or part-time (§§ 1, 3 PflegeZG). The act explicitly mentions the companionship of a close relative in palliative medical treatment as a legitimate reason to be exempted (§ 3 VI PflegeZG). The length of time employees can take off work varies depending on the number of informal caregivers. Each close relative of a care recipient in palliative treatment, for instance, can request a leave of absence from work for a maximum period of three months (§ 4 III 2 PflegeZG). These regulations are complemented by free courses for home care, pension contributions paid by nursing care insurance and further cash and non-cash benefits (Plöthner et al. 2019). In the UK, policies vary between England, Scotland, Wales, and Northern Ireland. Similar to German law, they all aim to support informal carers. In England, this support ranges from practical to financial and includes the provision of a carer’s assessment (Care Act 2014 (England), s. 10), security benefits and cash benefits directly to the informal caregiver (more detailed: Zigante 2018, 25–27). By contrast, carer’s assessments are not offered in Germany. Furthermore, in contrast to  See also Dunger et al. and Seidlein et al. in this volume.

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Germany, all acts and their associated strategies currently in place in the UK put more emphasis on the local authorities’ duty to support informal caregivers (e.g. Carers (Scotland) Act 2016, s. 24). Moreover, the statutory right to take leave from work is the same for all employees, regardless of caregiving duties. In the UK, it is up to the employer to offer informal caregivers support and/or flexible working hours beyond the legal provision (Work and Pensions Committee 2018, 15–20). The issue of informal caregiver support has gained more attention in Swiss social policy throughout the last ten years. From the postulate Seydoux-Christe (09.4199) demanding paid vacation for parents of severely ill children, more and more policies have focused on integrating informal caregiving with work (Bundesrat 2014). Different federal support options currently exist. Short paid leave from work (up to three days) to care for sick children or relatives is supported, as this is seen as a family duty. Reduced work inevitably leads to reduced pay for leave longer than three days. Apart from the legal obligations of employers, support exists through disability insurance and so-called old-age and survivor’s insurance. People in need of help with ADL can get a ‘helplessness allowance’, with a differentiation of three stages of ‘helplessness’. The amount of the allowance is higher in disability insurance than in old-age and survivor’s insurance. People who are ‘helpless’ can also apply for an assistance allowance which is used to hire help (Bundesrat 2014). This is, thus, part of a ‘cash for care’ scheme, where support is rendered indirectly (via the care recipient) to a (formal) caregiver. Finally, there are several – often cantonal (i.e. federal) – additional services and support structures which aim to improve informal caregiver coping. The later discussed case of the employment of informal caregivers (Sect. 9.3.2) is one of direct support by the cantonal home care services, which can be seen as part of ‘cash for care’ policies but extends beyond financial payment.

9.2.2  Care Ethics and Care Work Comparing the public support structures is instructive to reveal blurred boundaries on a legal and political level. On a normative level, informal care blurs the care relationship between physician and patient on which traditional biomedical ethics and professional ethics centre. Neither biomedical nor professional ethics take into account overarching societal or political considerations. They do not appreciate the role of a patient’s relatives or the informal carers. Therefore, it is through Care Ethics that blurred boundaries that come with informal caregiving can be mapped and held together. Informal caregiving at the EOL is part of care work, understood as both family and professional activities linked to household, parenting, caring for someone and nursing (Leget and Kohlen 2020). The demand of good care work for elderly and dying patients brings the issue of resources and responsibilities onto the political and scientific agenda. Questions of power, inequality and conflict meld the approaches of Care Ethics together with those of care work (Kohlen 2018, 271).

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Most approaches to Care Ethics “start from the notion that humans are intrinsically dependent on and interconnected with one another” (Stensöta 2010, 297). Care is seen as the process of responding to a human’s needs and, consequently, Care Ethics is needs-based and “seeks to maintain relationships by contextualizing and promoting the well-being of care-givers and care recipients in a network of social relations“(Sander-Staudt 2019). Kohlen (2016) points out that despite the different aims of the debates between Care Ethics and care work, there are commonalities. Informal caregiving can be embedded in the concept of care work. This is understood as reproductive work, which Schwarzenbach defines as “all those rational activities (thinking about particular others and their needs, caring for them, cooking their meals, etc.) which go toward reproducing a particular set of relationships between persons over time” (Schwarzenbach 1996, 102). However, this is usually unpaid work, especially if provided in the home environment. While reproductive work might be a more suitable approach to caring at the beginning of life, responding to needs observed at the EOL is equally essential.

9.3  T  he Situation of Informal Caregivers in Germany, Switzerland and the United Kingdom – Two Cases 9.3.1  I nformal Caregiving in Dementia: The Blurred Boundaries Between Becoming a Caregiver, Becoming Aware of it and Realising the Necessity of Support This subsection sets out to uncover the blurred boundary between exclusively being spouse, child, neighbour, gradually perceiving oneself as an informal caregiver and assuming this role. At an individual and interpersonal level, it centres mainly on observations from informal caregivers themselves and their relationship with their relative with dementia. Dementia is a neurodegenerative disorder affecting cognition. Symptoms of the disease can progress insidiously; as a result, relatives of people who develop dementia – if present – can transition to a caregiving role gradually, increasingly taking over daily tasks which can often result in full-time caring and nursing (Kurz et al. 2017). The social image of dementia continues to be a negative one: people often associate dementia with an impairment of higher cognitive functions and the gradual loss of self-determination and autonomy which can evoke feelings of fear (McParland et al. 2017). The life expectancy of people with dementia can vary between 5 and 20 years and depends on the age of onset, the type of dementia and the progression through each stage of dementia. People with Alzheimer’s disease, the most common type of dementia, for example, live an average of 8–10 years post diagnosis, but, due to the nature of the disease, they are increasingly unapproachable for the accompanying carers. Nevertheless, people with dementia can still be reached on the emotional

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level for a very long time, even though the rational level is executed and can be addressed less and less (DGPPN and DGN 2016). They constantly lose the capacity to relate reflexively to themselves and others. Nevertheless, characteristics of their personality which were once central for them as individuals become visible at one point or another. This is what Kruse (2017, 337) calls “Inseln des Selbst” (“isles of the self”). One can reach these ‘isles’ on the emotional level and by getting involved in the realities of the life of the person with dementia (Kruse 2016). In Germany, around 1.63 million people over 65 were living with dementia in 2016 (Statista 2019). There are no current studies or figures in Germany on LTC for dementia. It is estimated that about two-thirds of people suffering from dementia are cared for at home by their relatives (Deutsche Alzheimer Gesellschaft e. V. 2016). In the UK, around 850,000 people were estimated to be living with dementia (Prince et al. 2014). 9.3.1.1  C  omparison of the German and British National Dementia Strategy in the Context of Informal Caregiving The UK launched a major project in 2009 to raise public awareness of dementia and made the improvement of dementia services a national task: “Living well with dementia – A National Dementia Strategy”: The aim of the Strategy is to ensure that significant improvements are made to dementia services across three key areas: improved awareness, earlier diagnosis and intervention, and a higher quality of care. [...] This Strategy should be a catalyst for a change in the way that people with dementia are viewed and cared for in England. (DHSC 2009, 9)

The initiators identified 17 key points that are important for implementation, predominantly at a local level with the aim of improving the quality of care for people with dementia and promote a better understanding of its causes and consequences. The objectives included: “improving public and professional awareness and understanding of dementia”, “good-quality early diagnosis and intervention for all” and “good-quality information for those with diagnosed dementia and their carers” (DHSC 2009). This strategy has resulted in increased public and professional awareness of dementia, dispelling myths about the disease and easing feelings of fear and helplessness through education, information transfer or regional project initiation. Support services also benefit people living with dementia as well as their caregivers, encouraging them to take action and seek help early in the disease process. As a care network is established, mutual respect and dignity develops and the people with dementia are encouraged to articulate their needs as they face new challenges in everyday life (Heller and Schuchter 2018; Kruse 2017). Regarding Care Ethics, the purpose of caring is to fulfil human needs and ensure the protection of dignity and the personal development of the individual (Kohlen 2018). In Germany, until the beginning of 2019, there was no national, standardised care for people living with dementia, unlike the UK’s national dementia strategy (DZA

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2019). The strategy currently in progress is being developed from numerous national projects2: mainly regional lighthouse projects, well-functioning networks and initiatives (e.g. projects of the Alzheimer societies, regional associations or health institutions) or nationwide alliances that are involved in a wide variety of dementia-related activities. Since 2012, the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth (Bundesministerium für Familie, Senioren, Frauen und Jugend) and the Federal Ministry of Health (Bundesministerium für Gesundheit) have initiated a wide range of co-operation projects which aim at leading to the development of a national dementia strategy (DZA 2019). Therefore, the topic of dementia should no longer only be dealt with at the level of the federal states: The responsibility should fall on the society as a whole in order to improve the individuals affected and their wider social network. More than a decade later than the UK, Germany is now establishing a strategy to combine the forces of many actors in a co-operative, binding and long-term process (DZA 2019). The differences between Germany and the UK become particularly apparent in the formation of public opinion. Knowledge of the demographic change and its effects have been obvious for more than ten years, but it has been only in the UK that this awareness led to public action. 9.3.1.2  W  hat Does Informal Care Work Mean in the Context of Dementia? Public awareness and attitudes towards dementia in Germany were explored in the German Employees’ Health Insurance Nursing Report 2017 (Klie 2017). The authors of the study discussed the conditions for a good life with dementia. The social and emotional integration of a person with dementia was identified as an important factor. There is a desire “to preserve the dignity and self-determination of the person as far as possible” (Klie 2017, 23; translation by the authors). Regarding social interaction, the interviewees wanted more respect for people with dementia and more appreciation for the caregiver. Dissatisfaction is expressed about a lack of financial support but also the desire for more help from professional nursing services has been raised (Klie 2017). These desires for rewarded (emotional, social and financial) care and the recognition of the usually invisibly time invested have been regarded as central pillars of Care Ethics for many years (Kohlen 2018). The boundaries between becoming aware of being an informal carer, assuming the role as a caring relative and the self-image as an informal caregiver are blurred, particularly in the context of dementia. This blurred boundary regularly comes with a decrease from self-care to other-care or even leads to another blurring boundary: the one between caring for another person and needing care for oneself. It is particularly in this context that the consequences and measures a person takes for

2  E.g. https://www.wegweiser-demenz.de/allianz-fuer-menschen-mit-demenz/die-allianz/nationale-demenzstrategie.html (accessed 18 July 2019).

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individual mental hygiene are of great importance (more European studies can be found in Sect. 9.5). In most cases, the carers – especially in the home-based care of a person with dementia – are often late in revealing their own situation and needs (Klie 2017). It can be difficult as an external observer to fully appreciate and provide appropriate care arrangements (Bruker and Klie 2017). In this context, Care Ethics aims to highlight the inevitability of self-care. It includes caring for one's own health, education and individual needs. Care work for oneself is necessary at the job, in the family and with friends as well as in other areas in order to perpetuate one’s working capacity. (Kohlen 2018, 268; translation by the authors)

Caring relatives are part of the wider environment of people affected by dementia and can make a significant – supportive and stabilising – contribution to their loved one’s ADL by adapting to their diminishing abilities (Engel, 2007). Friends and neighbours are rarely involved in the case of dementia, because caregivers often feel ashamed of the behaviour of their dementia-affected relatives. Therefore, both run the risk of being subject to social isolation (Meyer 2005). This circumstance contradicts the principle of Care Ethics, also regarded as relational ethics, which refers to the fact that people are existentially dependent on each other (Kohlen 2018). Thus, people with dementia – due to their symptoms – and their caring relatives increasingly withdraw from social life. Caregivers have less time for their family, their social environment and their job due to the increasing amount of time spent caring. In addition to time pressure and years without leisure, rest and the pursuit of personal interests, the conditions under which care is provided for at home cause reduced social and family relationships, the loss of friendships and the feeling of loneliness. (Müller et  al. 2008, 10; translation by the authors)

The changes that dementia brings about for the family may threaten the familiar interplay of individual family members and upset the balance of their relationships (Wilz et al. 2001). In Germany, the family [...] continues to be the central institution which provides instrumental and emotional support for older people […] and home care is often still considered to be a private responsibility to be shouldered by the closest family members. (Meyer 2005, 11; translation by the authors)

Dementia makes the patient increasingly dependent on third parties. Due to the emerging care situation, a change of roles takes place within this family system, and new responsibilities have to be identified. The spouse “with whom [...] [before the illness] a mature relationship was maintained” is in constant need of care (Kruse 2017, 363; translation by the authors). Regarding one’s own children, there is a “reversal of the old ‘power relations’ [or] to [...] [their] ‘parentification’” (Wilz et al. 2001, 27; translation by the authors). Everything changes  – the child suddenly makes decisions for the parent or parent-in-law concerned, gives instructions, praises, punishes, washes and takes over many more tasks. This new circumstance can lead to the parent developing feelings of shame and guilt, aggressive behaviour but also to a special devotion to the child (Wilz et al. 2001, 27).

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The carer’s lack of autonomy to schedule their own day often leads to the impression that one cannot satisfy everyone’s needs, leading again to feelings of guilt and stress (Meyer 2005). In addition, constant supervision by the care-giving relative is necessary due to the increased urge for mobility of many dementia patients, which conveys a feeling of being tied down (Müller et al. 2008; Seidl and Labenbacher 2007). The Data Report 2018 of the Federal Statistical Office summarises the expenditure on care for people affected by dementia as follows: “The presence of dementia leads to an increase in the degree of care with otherwise identical conditions” (Destatis 2018, 331; translation by the authors). The average daily care of a person with dementia takes 4.5  hours (Gräβel and Addabo 2012). Pinquart and Sörensen (2002) find that the care for people with dementia is mentally more stressful than for those who do not suffer from dementia. The most common mental illness is depression, which, in turn, is considered to be the strongest predictor of dementia (Ismail et al. 2017; Schäufele et al. 2007; Wilz et al. 1999). The assumption of nursing care and support pushes most elderly people to the limits of their ability to cope with the frequent effect that the carers themselves fall ill and become “hidden patients” (Meier et al. 1999, 86). This, in turn, could eventually result in the primary informal caregiver becoming a co-client (Twigg 1989, 59–60). Being a co-client means becoming a client of the health services as a result of giving care, as this can affect the care-giver’s physical and/or mental health in a burdensome way. At worst, they also become patients, dependent on formal care – changing sides and facing boundaries between formal and informal care again  – because the level of self-care has not been sufficient to cope with the strain. In an attempt to prevent becoming a co-client in these highly emotional surroundings, informal carers often need to maintain a balance between their own psychosocial or economic needs and the needs of the care-receiver. Their self-care and the embedment in a whole care network is of special importance (see Sects. 9.4.1 and 9.4.2). Nevertheless, boundaries both between formal and informal care, self- and other-­ care are still highly blurred to date in Germany. In spite of all the burdens that nursing care can entail as outlined above, it must be mentioned at this point that informal caregivers also often experience “mental enrichment and fulfilment in the process of nursing” (Kruse 2017, 357; translation by the authors). These positive aspects must not be forgotten or overseen in conjunction with all the negative feelings. The findings listed underline the special relationship and value of caring relatives and friends. It is always important to ensure the integrity of both parties – caregiver and care recipient – to avoid improper advantage when offering support. The 17 key points of the British strategy make clear that all parties involved in the care relationship, the person with dementia, the caring relative(s) and the care network surrounding both, must be considered and treated equally in terms of information, knowledge transfer and support. The perspectives of all those involved should be carefully explored and given equal consideration  – reciprocity is the keyword here (Kruse 2017).

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It has become increasingly evident that informal caregivers need emotional, financial, practical and social support, especially against the background of blurred boundaries between self-care and other-care. A specific option of support is discussed in the next section.

9.3.2  B  lurring the Boundaries of Family Caregiving: The Case of Employment of Family Informal Caregivers in Switzerland When family members become informal caregivers, they are often in need of some form of support. Different international support options, for example, ‘cash for care’ policies, have been laid out above. Internationally, one measure of support for informal caregivers in Switzerland is employment through home care services (spitalexterne Pflege; Spitex), which is unique for Switzerland because it is restricted to ‘cash for care’, but includes pension and insurance benefits, as well as supervision and working in a multidisciplinary team. Conditions for employment of informal caregivers are: a) a basic formal nursing qualification, b) working age, and c) providing only LTC.  However, it only subsumes basic (Grundpflege) not advanced nursing care (Behandlungspflege), as only the former can be reimbursed by health insurance. Contracts are usually time-limited and end when the care recipient is admitted to a nursing home or dies (Von Ballmoos and Despland 2010). This model of support is unique internationally, because it is provided directly to the caregiver. Most models of support, for example, payment through local authorities in the UK, only offer indirect financial support, i.e. the care recipient receives an allowance which is used to hire care (Zigante 2018; see Sect. 9.3.2.1). As outlined above, such a model exists in Switzerland as well. Employing informal caregivers, on the other hand, is a form of direct support: employment is between the informal caregiver and the cantonal home care services. This is similar to the Structured Family Caregiving programmes partly existing in the United States but also notably different: these programmes provide literally “cash for care”, while employment arguably extends beyond receiving payment (even though getting paid might be the most important component). Denmark has a very similar model to Switzerland: in the former, informal caregivers can be employed by the municipalities. In contrast to the Swiss model, informal caregivers in Denmark are paid for more than 10 h a week and continue to receive pay even if the person is in a hospital or nursing home (Zigante 2018). Furthermore, the Danish caregivers are neither included in a multidisciplinary team nor receive training. Although international comparisons exist, the Swiss situation is unique. Data from 2008 indicate that 40 spousal or family caregivers were employed in six Swiss cantons (Von Ballmoos and Despland 2010). Under 0.5% of home care services staff is made up of informal caregivers (Von Ballmoos and Despland 2010). Thus, overall employment of informal caregivers is marginal. Nonetheless, the topic has been covered by media

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outlets and local initiatives due to the moral issues allegedly raised by the employment of informal caregivers.3 From the perspective of Care Ethics, it will be argued that while the employment of informal caregivers in Switzerland blurs the boundaries of family and professional care, family care remains undervalued. 9.3.2.1  Is Employment Permissible from a Care Ethics Perspective? Care Ethics is essential to understanding these moral issues because it provides a particularistic approach suitable to analysing different moral situations, which, nonetheless, is centred on human relationality. In this subsection we use Care Ethics as a normative standard to lay out moral issues in the employment of informal caregivers. Most moral issues of the employment of informal caregivers pertain to a certain understanding of caring: i.e. the view that family care belongs to the “world of the gift [that] moves through a continual affirmation of bonds, based on responsibility, trust, and gratitude and premised on our capacity for wholehearted attachment” (Hochschild 2013, 168). From this point of view, if employment in some way infringes on the nature of the care or the attitude of the caregivers within familial relationships or if it is commodified to the extent of exploitation of the informal caregiver (Blaser 2001), employment becomes an unacceptable form of support. However, employment becomes impermissible only if it is an empirical fact that care is meaningfully changed by the employment of informal caregivers. Indeed, Stacey and Ayers (2012) describe that payment is perceived by family caregivers as a norm violation. The norm violated is that family care should be a gift and, hence, unpaid. Understood in this way, one could assume that one essential feature of Care Ethics might be in opposition to the acceptability of employment of informal caregivers: Care Ethics demands that caring attitudes are upheld (Kittay 2001). Employment of informal caregivers, on the other hand, might ‘crowd out’ the caring attitude to care, as care is rendered for instrumental reasons: to receive payment and pension benefits as a co-worker of “agencies [which] work in parallel with the informal sector” (Twigg 1989, 58). This goes hand in hand with the worry that care might not be provided in the care recipient’s best interest: clearly, providing unwanted care falls short of having a caring attitude. These worries do not seem to be empirically substantiated. Empirical research generally suggests that welfare state support complements family support or even strengthens it (Daatland and Herlofson 2003; Künemund and Rein 1999; Motel-Klingebiel and Tesch-Römer 2006). By contrast, crowding-in just effects are also plausible. If informal caregivers have the option of employment, they might more often take up informal care for a relative or friend as they can choose between two types of paid employment.

3  For the political controversies in the Swiss town of Uster, see https://www.sp-uster.ch/vorstoessedetails/189.html (accessed 27 September 2019).

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Welfare state support, such as employment of caregivers, could then work as “encouragement of family help through formal service provision” (Motel-Klingebiel et al. 2005, 866). Clearly, this does not say anything about the effect that payment has on caring attitudes. However, it is at least plausible that caring attitudes are sometimes hindered by the demands of care, namely the financial costs (Feinberg et  al. 2011) caused partly by the reduction of working hours. Consequently, some form of institutional support is needed for caring attitudes to come into effect. 9.3.2.2  Can Employment Be Care? So far, we have argued that employment is not generally impermissible from a perspective of Care Ethics. This is because a) the assumption that employment affects care and caring attitudes in a negative way is unsubstantiated and b) because the consequences generally for informal care (to increase the provision of informal care, i.e. to crowd in, or to decrease the provision of informal care, i.e. to crowd out) can be positive or negative. At this point, we do not have any reason to believe that care and caring attitudes are in any danger due to employment. Indeed, we may ask whether employment can actually have positive consequences for informal caregivers. Employment could possibly constitute care for informal caregivers. This would treat informal caregivers not only as care-providers and co-workers but also as potential care-recipients, i.e. co-clients (Twigg 1989, 59–60), which is to say that family caregivers are in need of care themselves. These needs are not the same as the immediate care work they themselves provide. It is more an understanding of needs than the capacity to benefit (Asadi-Lari et al. 2003; Wright et al. 1998). In the healthcare context, this means that “if health needs are to be identified then an effective intervention should be available to meet these needs and improve health” (Wright et al. 1998, 1311). Employment, from this point of view, could be an effective intervention regarding self-care. Family and informal caregivers can be in a precarious situation, not only financially (Feinberg et al. 2011). Additionally, family caregiving can be lonely (Vasileiou et al. 2017) and overly demanding if caregivers are not trained for the tasks they are required to perform (see Sect. 9.3.1). Employment could be a potentially useful tool here to ameliorate the situation of informal caregivers. Benjamin Miller (2016), for example, has argued that legal institutions could and should be designed to care. This is part of a wider push for a Public Ethics of Care (PEC; Stensöta 2010). According to Helen Stensöta, a PEC makes two promises. Firstly, that through PEC, “the government makes a statement that relations between people are seen as intrinsically important” (Stensöta 2010, 299, original emphasis), and secondly that PEC “provides a framework for how care-related services and provisions tasks can be performed in the best way”, which is “possible through the value of responsiveness” (Stensöta 2010, 299). Employment, from this perspective, could be a caring legal administrative device if it values caring relationships and is responsive to the caregivers’ needs. It can also help to hold the blurring of the boundaries between caring for others and caring for oneself at bay.

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The Swiss model of employment only partially meets the standards set in these promises. Employment clearly does not make a statement of the importance of caring relationships. That is because employment is only offered to informal caregivers who have at least basic nursing training and are of pre-retirement age. Hence, this excludes older informal caregivers without professional training. This perpetuates a professional service view of care that is not compatible with the wider reproductive notion of care. Care Ethics demands that all care work is seen as work, not only professional care limited to certain tasks. The first promise is not fulfilled by the Swiss model of employment. The latter only partly fulfils the second criterion of responsiveness. It provides informal caregivers with some additional income and with pension years, which they would not receive without employment. Additionally, in most cantons, informal caregivers are closely supervised and work in a team, even though they are only responsible for one care recipient. This helps with loneliness and the financial costs of caregiving. Nonetheless, the Swiss model falls short of providing care in some regards: financial needs are only minimally met, as employment is compensated maximally for ten hours of care per week. This is because only basic care is compensated by the home care providers. The latter, while cantonal, are largely paid by the Swiss health insurances, which limits the care work to a narrow understanding of health-related care work. Consequently, care is only relevant if it relates to the fulfilment of tasks related to health care. As outlined, this is an understanding of care clearly incompatible with Care Ethics.

9.4  M  anaging Blurred Boundaries: Awareness Promotion, Supportive Structures, and Care Ethical Attitude The two cases and the legal and theoretical background particularly reveal three different blurred boundaries. 1. On the level of the individual informal caregiver, lines are blurred between becoming an informal caregiver, becoming aware of being an informal caregiver and being recognised as such. Moreover, and transcending the scope of the present article, the recognition as an informal caregiver might lead to blurring boundaries between private and public space, which also is reflected in the British National Dementia Strategy. 2. Boundaries between formal and informal caregivers are especially blurred if they share tasks and responsibilities, such as feeding or mobilization, therefore, complementing or supplementing each other (Jacobs et  al. 2014, 58). This is especially the case where informal caregiving at home coexists with professional home care. While the Swiss case shows that paying informal caregivers for their care leads to a blurring of boundaries between family and professional caregiv-

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ing (Genet et al. 2012, 10), the blurring of boundaries between work and home life, especially if informal caregivers are dependent on the good will of their employers as it is in the UK, needs to be researched further (Martin-Matthews and Phillips 2008). 3. Finally, both cases repeatedly unfold that informal care can – and often does – lead to a blurring of boundaries between care for another person (the care-­ receiver) and care for oneself. This aspect is particularly important in the light of Care Ethics and care work (Sect. 9.4.1). While care-givers’ self-care is insufficiently addressed in all three countries (Germany, UK and Switzerland), the international comparison implies two opposing trends. On the one hand, the case of Switzerland shows that boundaries are not blurred enough. While employment could be designed as a caring legal administrative device, the current Swiss model of employment is not acceptable from the perspective of a PEC because it upholds the boundary between informal and formal care. This is to say that while informal caregivers’ work is now valued within the labour market for the first time, only part of it is. Reducing informal caregivers’ work to professionals’ tasks falls short of making a decisive difference for informal caregivers. Rather, it upholds the strict division between family and professional care. While it might be a well-meaning start to value informal caregivers’ work, it does not follow through and potentially excludes the major part of care work performed by caregivers above retirement age or without professional nursing training. Furthermore, the Swiss model continues to see ‘care work’ as a mere fulfilling of medical and nursing tasks, excluding the vast segment of ‘reproductive work’ outlined above in Sect. 9.2.2. Consequently, it lacks the remuneration of equally important caring tasks, such as doing grocery shopping, preparing meals, interacting with the care recipient and looking after the latter’s mental and emotional well-being. For a thorough responsiveness and recognition of informal caregivers’ contributions to the functioning of the ‘formal’ health-care system, ‘care’ has to be more comprehensive. On the other hand, the case of caring for relatives with dementia emphasises the importance of countervailing blurred boundaries between the informal caregiver and the care recipient. Due to the increasing isolation of elderly couples with one partner being affected by dementia, providing care for others often comes with insufficient care work for oneself. Such boundless care might only be revealed if informal caregivers themselves become co-clients or even patients. Although pointing to opposing trends, both cases illustrate the crucial significance of embedding informal care into a larger context and care network: the extended family, formal care services, but also health and social institutions, legislation and politics. At the same time, future policies have to emphasise and ensure informal caregivers’ self-care.

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9.4.1  Between Care Work for Others and for Oneself The State of Caring report from the UK (Carers UK, 2018) represents the necessity of institutional support for caregivers. Most of the participants mention that they are neglecting themselves, are worried about their personal safety and feel socially isolated. The process of social isolation and becoming aware of oneself as a caring relative usually takes place slowly. Consequently, the boundaries between ‘giving a hand’, ‘caring’ and ‘nursing’ also blur slowly. In addition, relationships get out of balance due to caring: Within marriage, one-sided dependency leads to a loss of balance and of interaction at eye level; in the parent-child relationship, roles are reversed. Children suddenly decide for their parents and take over tasks that were previously clearly the responsibility of the parents (Lawson 1987, 275). Thus, practicing self-care is especially difficult for informal caregivers as they are involved in a strong social network and can hardly leave their newly acquired role (more aspects are discussed in Sect. 9.5 including perspectives also from the European South). It is not surprising that they often put forward the wish of respite, a short period of relief from care in the form of outpatient day care or a joint stay of an informal caregiver and care receiver in a health resort (Plöthner et al. 2019). This wish has to be answered with sufficient offers that enable caring relatives to achieve comprehensive mental hygiene in order to find a balance between their own needs and those of the person to be cared for (Colombo et al. 2011, 97–103). It is up to national legislation to adhere to the European Charter for family carers that addresses in its eighth principle the “right to respite”: “This is a fundamental necessity to be met in terms of support, occasional and/or emergency assistance, substitution services and/or top-quality temporary care centres during various periods of time depending on needs (holiday, rest, health, etc.)” (COFACE Disability 2017). In the UK, day and respite care are already recognised by the health-care policy as being important “to keep things going for family and patient as long as possible” and are seen as an appositive service to in-patient care (Lawson 1987, 277). Day care hospices, for example, are an important institution of respite structures for informal caregivers. While day care hospices have been an integral element of palliative care services in the UK since the 1990s (Higginson 1993), Germany is just starting to establish day care hospices.4 In addition to political and institutional developments related to supportive structures for informal caregivers, researchers such as van Kempen et al. (2012) point out that informal caregivers expect continuing psychosocial support and a patient-­ professional relationship. Furthermore, need for positive and respectful conversations and care decisions concerning the care-recipient’s well-being is identified (Schwenk 2017; Stolee et  al. 2014). This would enable a continuous building of trust (see Sect. 9.4.3) and the formulation of task profiles and reflection spaces which would contribute to successful co-operation (Schwenk 2017, 241ff). 4  The foundation of the first German day care hospice was laid on 1 November 2018: https://www. presseportal.de/pm/103154/4100872 (accessed 27 September 2019).

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The case of Switzerland deals with at least some of these blurred boundaries, as the employed family caregivers frequently meet with  their interdisciplinary team and can share their experiences and burdens. Nevertheless, it is crucial to embed the care dyad into a whole network of care to address all aspects and hold up some boundaries between the informal caregiver and care recipient. Taking Care Ethics seriously, care work does not only tackle the people affected by care (giving or receiving), but also responsibility has to be taken over by politics and society at large.

9.4.2  C  ollaboration and Co-operation, or Taking Advantage of Blurred Boundaries Professional caregivers can be seen as one of the most important resources for informal caregivers in the home care setting. Involving professionals could be a relieving factor for all people involved in the care interaction, particularly at the EOL. When strong emotions, such as disgust or fear, are present in the interaction with the care recipient, professional caregivers can take care for others. One might think of situations where the boundaries of the body become blurred. Mutual support becomes significant especially at the EOL when aggressive tumours can destroy the body (Kaiser et al. 2019; Lawton 1998). Informal caregivers often become overwhelmed in emergencies and even during routine care. On the one hand, they do not have the professional knowledge necessary for advanced nursing care (Hetue Hill 2019, 123), and, on the other hand, they are involved in a much deeper emotional relationship with the care recipient. Furthermore, the high need of training and education highlights the importance of co-operation and collaboration between professionals and informal caregivers. In cases of emergency or in the context of death and dying, for example, a lack of information can lead to fear and distress for both caregiver and care receiver. This can be resolved with stronger co-operative networks between formal and informal caregivers (Lund et al. 2014). This need for shared information arises within various studies (Crotty et al. 2015; LaVela et al. 2016; Lund et al. 2014) and is seen as a mutual aim to which both professionals and families have to contribute. The findings about the co-operation and communication between professional and informal caregivers – a significant further blurring of boundaries between formal and informal care – demonstrate the need for a wider understanding of supportive structures for informal caregivers, as discussed in the case of employment of family informal caregivers in Switzerland (Sect. 9.3.2).

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9.4.3  Trust: The Underlying Care Ethical Attitude The self-image of an informal caregiver depends strongly on the possibilities of support offered. They often reveal their own situation and needs too late. Lack of early support results in their transition into a co-client. In order for Care Ethics to be implemented more widely, reciprocity and responsiveness between the informal caregiver and professionals has to come to the attention of future policymakers to initiate practical interventions. This reciprocity is inevitably based on trust. Boundaries between formal and informal care can only be blurred successfully and without causing additional distress if all people involved trust one another. Kittay highlights trust in the context of Care Ethics. She associates her experiences as a mother of a disabled daughter to her work as a philosopher: “[…] given […] the physical or mental incapacity, the trust invested in the [professional caregiver] not to abuse [the] power over the charge [by the physical or mental incapacity] is enormous” (Kittay 2001, 561). She points out the power inequity within the care relationship and the necessity of a trusting relationship. Focusing on the relational aspect of care can be helpful to establish the responsibility and supportive role of institutions and professionals and emphasise the importance of both professionals and informal caregivers in the home care setting. The example of trust shows some of the difficulties that arise when informal caregivers are made to suddenly share or hand over their care work to a professional. Consequently, being aware of the dynamics and boundaries of professional care towards family care is essential to support informal caregivers adequately. Again, a Care Ethical approach can offer normative guidance to circuit boundaries and highlight the comprehensiveness of care. As the family is “a social institution with a particular history and structure” (Tronto 2010, 161), care for a family member is also of particular importance. Hence, institutions and professionals have to comprehend the individuality and diversity of care to meet the needs and preferences both of the care recipient and their family. On the one hand, this goal can be reached if professionals understand the caring process in the home care setting as a co-operative process where informal caregivers and care recipients are included with their personal and individual experiences and knowledge. On the other hand, this has implications for both institutions and homecare: […C]are institutions have to think about the nature of the caring process as a whole in order to guide their actions. This requirement does not only demand that the ‘needs’ of the ‘customers’ come first but also that the needs of care workers, the allocation of responsibility and proper assessment also happen within the organization. (Tronto 2010, 162)

Consequently, good and just care can be provided only if caregivers, whether they are informal caregivers who form part of the ‘institution family’ or professional caregivers who form part of a caring institution, involved in decision-making processes are encouraged and involved due to personal responsibility and are perceived as persons with needs and wishes. Getting to the heart of the issue, Kittay (2001 560–561) writes that “[…] to advocate for my daughter without also advocating for those who are entrusted with her wellbeing is at once unjust and uncaring toward the caregiver”.

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9.5  Blurred Boundaries of Care: A European Perspective The three compared countries all support caregivers through a welfare-state regime. However, as we have shown by analysing the blurred boundaries of informal caregiving in the UK, Germany and Switzerland, caregiving is a cultural and welfare context-dependent activity. There is a variety of factors influencing the caregiving work done every day. The legal system enables substituted decision-making in the case of dementia, or the support services of the welfare state, provide, for example, state-funded pay for caregiving. Generally, welfare state regimes in OECD countries have been classified according to the typology by Esping-Andersen (1990) as liberal, conservative, or social democratic. In this typology, the UK is a liberal, while Germany and Switzerland are conservative types of welfare state. Confirming this model, the UK would provide more individual means-tested support while Germany and Switzerland would support families more in providing care. There have been several criticisms of this typology, most importantly that it is gender-blind and neglects the European South (Michoń 2008). Michoń (2008) shows how the familisation-defamilisation dichotomy has been introduced as a gender-­sensible alternative to the aforementioned typology. Following this typology in our analysis, we have studied two welfare systems with a certain degree of familisation (Germany, Switzerland) and one more defamilisied welfare state (the UK). The degree of familisation of welfare systems influences how the blurred boundaries identified in our analysis play out in different European countries. Generally, the European South has been identified as a paragon of a familistic welfare state. Italy, Greece, and Spain are conventionally seen as Mediterranean countries where care is typically provided by families. However, also Eastern European states show high degrees of familisation in both policy and cultural value (Szelewa & Polakowsky, 2008). Therefore, within the European context these states provide a worthwhile comparison to the states discussed so far. A key factor is cohabitation. Barbosa et al. (2020) found in the SHARE study that “in the Central, Eastern and Southern European regions, co-residential caregivers aged 50+ are predominantly women, with the percentage of female co-­residential caregivers in the Eastern and Southern regions being considerably higher than in the Northern and Central regions”. Assuming that in Mediterranean states with a high degree of familisation, caregivers and care-recipient as well as other family members cohabitate more regularly, selfcare might become harder to achieve due to more obligations of care to others. The boundary of self- and other-care is especially blurred under these circumstances. In parallel, the boundary between becoming a caregiver and being a non-­ caregiving relative or significant other is more blurred when there is an expectation by the state that care is provided within families. Generally, becoming a caregiver in the context of dementia is similar in most European contexts. For the typical process of becoming a caregiver has been described in an Estonian narrative study: “The

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interviews revealed that relatives of people with dementia noticed a deterioration of cognitive functioning years before the care began. They did not seek help, however, because they did not suspect that the impairments could be the symptoms of dementia. Family members wrongly assumed that the peculiar behaviour of their loved one was a normal sign of ageing” (Varik et al. 2020, 450). Clearly, this is an universal feature of a progressive neurodegenerative disorder. Nonetheless, the ability and way caregivers provide care is influenced by the welfare context. However, even in welfare states generally supporting families (with a high degree of familisation), support can come in fractured ways. Wulff et al. (2020) state that “Italian caregivers often lack support in terms of formal services, home-care and professional training from the government”. Here not familisation but the general unavailability of support services influences informal caregivers to immediately take over the caregiving role. In their comparative paper, Wulff and colleagues point out: “Italian caregivers are more likely to live with their care recipients, consequently spending more hours in caregiving compared to Swedish caregivers. As they find less time for themselves and are more exposed to physical, emotional and financial constraints, they are more likely to experience psychological distress.” It is therefore possible that the most basic distinction in the European context regards the general availability of support services, and that it is secondary if this welfare state shows a high degree of familisation. However, the perception of the availability of services by affected families might be more important than the availability of services per se. Koukouli et al. (2020, p. 7) have shown in their study that [f]amilism and gender were two predisposing factors found to affect perception of services. These seem to be important in the Greek culture and they may be in any other collectivistic culture where the individuals are interdependent, value, and rely on the family. Therefore, perception of services may not be influenced by their adequacy and availability per se, but also by the cultural values of the perceiver, and should be taken into consideration in relative studies.

Here, familism is not understood as part of a way policies are structured around supporting the provision of care – if it is dependent on family structures or independent of it. Rather, familism represents how care is structured culturally around the family and consolidated by familistic public policies. There are two caveats to the discussion of familism. First, familism has majorly been studied within the context of childcare provisions. Hence, when welfare states are described as familistic, this might not hold for the provision of family care for older adults. Second, the existence of familistic welfare-systems has often been equated with the existence of cultural family values and family structures. Especially the Mediterranean states in the South of Europe have often been seen as paragons of family-based care provision. However, this is more complex than the notions of familistic or collectivistic suggest. In their aptly named article “The Myth of the Mediterranean Family” Calzada and Brooks (2013) describe how the familistic focus on the Southern European countries only holds up in comparison to specific Northern countries. These limits and the partly too focused approach need to be taken into account when comparing the – apparently – same phenomenon across different countries.

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9.6  Conclusion and Outlook Formal and informal care, other- and self-care are not mutually exclusive but interdependent. It is this care triad of care receiver, formal caregiver and informal caregiver that is essential for a single care recipient and their well-being. Nevertheless, formal and informal caregivers and care recipients are part of a community and society as a whole. It is a characteristic of care that it is relational, blurs boundaries and often requires more than one counterpart. This nature of care and the difficulties addressed highlight the necessity to think and act in care networks, which are based on trust and mutual understanding. However, as demonstrated by the two cases of Germany and Switzerland, the national support structures and legal regulations in both countries still regard informal caregiving as an isolated phenomenon which is mainly tackled on the microsocial level. Although the family is still regarded as the central institution which provides instrumental and emotional support, the changing family systems that have occurred over time bear a growing risk of comparatively early institutionalisation (Genet et al. 2012; Zigante 2018). This phenomenon must be counteracted effectively with alternatives and attractive supportive options. In the vein of calling for a more comprehensive social, political and legal responsibility in the care network, this analysis also emphasises the importance of professional ethics to include the general public and health-care professionals. This means that a care policy involving the public ensures that care work is not solely delegated to a (vulnerable) group of people who are left alone with the responsibility of caring but rather to an attitude that shapes policymakers, administrative services, public employees and civil society (Eichner 2015, 94–98). Caregiving must continue to be brought into public awareness in order to improve the social image of caring professions and caring in general. The people affected and their relatives can benefit through information and knowledge transfer and wide-ranging support. A thorough change requires a “System Thinking” (Werhane 2003, 89) that integrates all health-care stakeholders. Among these are not only care recipients, formal caregivers and informal caregivers, but also the government, educators and researchers, the wider community, professional associations and many more (Werhane 2003, 84). Society can be challenged through Care Ethics “to rethink the nature and purpose of politics and the political vocabulary of justice, freedom, privacy, and the like in terms of what is necessary for promoting and sustaining good personal care” (Engster and Hamington 2015, 1).

References Asadi-Lari, Mohsen, Chris Packham, and David Gray. 2003. Need for redefining needs. Health and Quality of Life Outcomes 1: 34. Barbosa, Fatima, Gina Voss, and Alice Delerue Matos. 2020. Health impact of providing informal care in Portugal. BMC Geriatrics 20: 440.

9  Blurring Boundaries at the End of Life in Home Care: A Look at Germany…

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Blaser, C.  Jean. 2001. The case against paid family caregivers: Ethical and practical issues. In Ethics in community-based elder care, ed. Martha B. Holstein and Phyllis B. Mitzen, 278–285. New York: Springer. Bruker, Christine, and Thomas Klie. 2017. Mixturen der Sorge. Engagement und Subsidiarität in Palliative Care. Praxis PalliativeCare 36: 22–27. Bundesrat. 2014. Unterstützung für betreuende und pflegende Angehörige. Situationsanalyse und Handlungsbedarf für die Schweiz. Bericht des Bundesrates. Bern. https://www.bag.admin.ch/ dam/bag/de/dokumente/nat-­gesundheitspolitik/aktionsplan_pfleg_angehoerige/bericht_des_ br_angehoerige.pdf.download.pdf/bericht_des_br_zur_angehoerigenpflege_de.pdf. Accessed 27 Sept 2019. Calzada, Ines, and Clem Brooks. 2013. The myth of Mediterranean Familism: Family values, family structure and public preferences for state intervention in care. European Societies 15 (4): 514–534. Carers UK. 2018. State of caring 2018. https://www.carersuk.org/for-­professionals/policy/policy-­ library?task=download&file=policy_file&id=6503. Accessed 27 Sept 2019. COFACE Disability. 2017. European charter for family carers. http://www.coface-­eu.org/wp-­ content/uploads/2016/12/European-­Charter-­for-­Family-­Carers.pdf. Accessed 26 Sept 2019. Colombo, Francesca, Ana Llena-Nozal, Jérôme Mercier, and Frits Tjadens. 2011. Help wanted? Providing and paying for long-term care, OECD Health Policy Studies. Paris: OECD Publishing. Crotty, Bradley H., Jan Walker, Meghan Dierks, Lewis Lipsitz, Jacqueline O’Brien, Shira Fischer, Warner V. Slack, and Charles Safran. 2015. Information sharing preferences of older patients and their families. JAMA Internal Medicine 175: 1492–1497. Daatland, Svein O., and Katharina Herlofson. 2003. ‘Lost solidarity’ or ‘changed solidarity’: A comparative European view of normative family solidarity. Ageing and Society 23: 537–560. Destatis. 2018. Datenreport 2018  – Kapitel 8: Gesundheit und soziale Sicherung. https://www. destatis.de/DE/Service/Statistik-­Campus/Datenreport/Downloads/datenreport-­2018-­kap-­8. html. Accessed 24 July 2019. Deutsche Alzheimer Gesellschaft e. V. 2016. Zahlen zu Häufigkeit, Pflegebedarf und Versorgung Demenzkranker in Deutschland. https://www.deutsche-­alzheimer.de/uploads/media/infoblatt1_haeufigkeit_demenzerkrankungen_dalzg_01.pdf. Accessed 27 Sept 2019. DGPPN, & DGN. 2016. S3-Leitlinie “Demenzen”. Deutsche Gesellschaft für Psychiatrie und Psychotherapie, Psychosomatik und Nervenheilkunde (DGPPN), Deutsche Gesellschaft für Neurologie (DGN) and Deutsche Alzheimer Gesellschaft e.V.—Selbsthilfe Demenz. https:// www.awmf.org/uploads/tx_szleitlinien/038-­013l_S3-­Demenzen-­2016-­07.pdf. Accessed 26 Sept 2019. DHSC. 2009. Living well with dementia – A national dementia strategy. Department of Health and Social Care. https://www.gov.uk/government/publications/living-­well-­with-­dementia-­a-­ national-­dementia-­strategy. Accessed 27 Sept 2019. DZA. 2019. Nationale Demenzstrategie. Deutsches Zentrum für Altersfragen. https://www. nationale-­demenzstrategie.de/. Accessed 27 Sept 2019. Eichner, Maxine. 2015. The supportive state. In Care ethics and political theory, ed. Daniel Engster and Maurice Hamington, 86–107. Oxford: Oxford University Press. Engel, Sabine. 2007. Belastungserleben bei Angehörigen Demenzkranker aufgrund von Kommunikationsstörungen. Erlanger Beiträge zur Gerontologie. Berlin: Lit Verlag. Engster, Daniel, and Maurice Hamington. 2015. Introduction. In Care ethics and political theory, ed. Daniel Engster and Maurice Hamington, 1–16. Oxford: Oxford University Press. Esping-Andersen, Gøsta. 1990. The three worlds of welfare capitalism. Princeton, NJ: Princeton University Press. Feinberg, Lynn, Susan C. Reinhard, Ari Houser, and Rita Choula. 2011. Valuing the invaluable: 2011 update, the growing contributions and costs of family caregiving. Washington, DC: AARP Public Policy Institute.

158

M. Kaiser et al.

Genet, Nadine, Wienke Boerma, Madelon Kroneman, Allen Hutchinson, and Richard B. Saltman. 2012. Home care across Europe. Current structure and future challenges (Observatory studies series No. 27). WHO Europe. Gräβel, Elmar, and Raffaela Addabo. 2012. Belastung pflegender Angehöriger. In Expertisen zum Achten Familienbericht “Zeit für Familie”, ed. Fabienne Becker-Stoll, Hans-Peter Klös, Helmut Rainer, and Gregor Thüsing, 283–311. München: ifo Inst. Heller, Andreas, and Patrick Schuchter. 2018. Sorge im Alltag. Eine Vielfalt von Beziehungen schaffen ein Sorge-Netz, das den Alltag sichert. Praxis PalliativeCare 38: 22–25. Hetue Hill, Sarah E. 2019. Care of the family and social aspects of care. In Palliative care and catholic health care, ed. Peter J. Cataldo and Dan O’Brien, 119–137. Cham: Springer. Higginson, Irene. 1993. Palliative care: A review of past changes and future trends. Journal of Public Health Medicine 15: 3–8. Hochschild, Arlie R. 2013. So how’s the family? Berkeley: University of California Press. Houses of Parliament. 2018. Unpaid care. Postnote Number 582, July 2018. https://researchbriefings.parliament.uk/ResearchBriefing/Summary/POST-­PN-­0582. Accessed 12 Feb 2020. Ismail, Z., H. Elbayoumi, C.E. Fischer, D.B. Hogan, C.P. Millikin, T. Schweizer, M.E. Mortby, E.E. Smith, S.B. Patten, and K.M. Fiest. 2017. Prevalence of depression in patients with mild cognitive impairment: A systematic review and meta-analysis. JAMA Psychiatry 74: 58–67. Jacobs, Marianne T., Marjolein I. van Broese Groenou, Alice H. de Boer, and Dorly J.H. Deeg. 2014. Individual determinants of task division in older adults’ mixed care networks. Health & Social Care in the Community 22: 57–66. Kaiser, Mara, Helen Kohlen, and Vera Caine. 2019. Explorations of disgust: A narrative inquiry into the experiences of nurses working in palliative care. Nursing Inquiry: e12290. https://doi. org/10.1111/nin.12290. Kittay, Eva F. 2001. When caring is just and justice is caring: Justice and mental retardation. Public Culture 13: 557–579. Klie, Thomas. 2017. Pflegereport 2017. Gutes Leben mit Demenz: Daten, Erfahrungen und Praxis. Heidelberg: Medhochzwei Verlag GmbH. Kohlen, Helen. 2016. Sorge als Arbeit und Ethik der Sorge. Verbindungslinien zwischen beiden wissenschaftlichen Diskursen. In Praxis der Achtsamkeit. Schlüsselbegriffe der Care-Ethik, ed. Elisabeth Conradi and Frans Vosman, 193–225. Frankfurt/New York: Campus. ———. 2018. Geschlechtergerechte Sorgearbeit im Horizont der Care-Ethik. In Geschlecht und Gesundheit. Gesundheitsforschung. Interdisziplinäre Perspektiven, ed. Ann K. Augst, Ulrich M.  Gassner, Julia Hayek, Alexandra Manzei, and Florian Steger, 1st ed., 253–284. Baden-­ Baden: Nomos. Koukouli, Sofia, Argyroula E. Kalaitzaki, Symeon Panagiotakis, Georgios Markakis, Perla Werner, and Chariklia Tziraki. 2020. Factors associated with the perception of services by dementia informal caregivers in Greece: The role of familism. Aging & Mental Health. https://doi.org/1 0.1080/13607863.2020.1857694. Kruse, Andreas. 2016. Selbst und Selbstaktualisierung. In Demenz und Palliative Geriatrie in der Praxis. Heilsame Betreuung unheilbar demenzkranker Menschen, ed. Marina Kojer and Martina Schmidl, 2nd ed., 263–274. Wien: Springer. ———. 2017. Lebensphase hohes Alter: Verletzlichkeit und Reife. Berlin: Springer. Künemund, Harald, and Martin Rein. 1999. There is more to receiving than needing: Theoretical arguments and empirical explorations of crowding in and crowding out. Ageing and Society 19: 93–121. Kurz, Alexander, Hans-Jürgen Freter, Susanna Saxl, and Ellen Nickel. 2017. Demenz. Das Wichtigste: Ein kompakter Ratgeber. Ratgeber für Angehörige und Profis. https://www. deutsche-­alzheimer.de/fileadmin/alz/broschueren/das_wichtigste_ueber_alzheimer_und_ demenzen.pdf. Accessed 26 Sept 2019. LaVela, Sherri L., Stephanie Turcios, Alex Malhiot, Bella Etingen, Jennifer N.  Hill, and Scott Miskevics. 2016. Do perceptions of family-centered care differ in older and younger family/ caregivers of U.S. veterans? Families, Systems & Health 34: 136–149.

9  Blurring Boundaries at the End of Life in Home Care: A Look at Germany…

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Lawson, Ian R. 1987. Elderly dependency and systems failure: Obstacles to a prosthetic society. In Ethical dimensions of geriatric care, ed. Stuart F. Spicker, Stanley R. Ingman, and Ian R. Lawson, 273–290. Dordrecht: Springer. Lawton, Julia. 1998. Contemporary hospice care: The sequestration of the unbounded body and ‘dirty dying’. Sociology of Health & Illness 20 (2): 121–143. https://doi. org/10.1111/1467-­9566.00094. Leget, Carlo, and Helen Kohlen. 2020. End of life: Care ethical perspectives. In Contemporary European perspectives on the ethics of end of life care, ed. Nathan Emmerich, Bert Gordijn, Pierre Mallia, and Francesca Pistoia. Cham: Springer. Lund, Dale A., Rebecca L. Utz, Michael S. Caserta, Scott D. Wright, Sarah M. Llanque, Chris Lindfelt, Herb Shon, Carol J. Whitlatch, and Julian Montoro-Rodriguez. 2014. Time for living and caring: an intervention to make respite more effective for caregivers. International Journal of Aging & Human Development 79: 157–178. Martin-Matthews, Anne, and Judith E. Phillips, eds. 2008. Aging and caring at the intersection of work and home life. Blurring the boundaries. New York/London: Taylor & Francis Group. McDonald, Janet, Eileen McKinlay, Sally Keeling, and William Levack. 2017. Complex home care: Challenges arising from the blurring of boundaries between family and professional care. Kōtuitui: New Zealand Journal of Social Sciences Online 12: 246–255. McParland, Particia, Fiona Kelly, and Anthea Innes. 2017. Dichotomising dementia: Is there another way? Sociology of Health & Illness 39: 258–269. Meier, Denise, Doris Ermini-Fünfschilling, Andreas U. Monsch, and Hannes B. Strähelin. 1999. Pflegende Familienangehörige von Demenzpatienten. Ihre Belastungen und ihre Bedürfnisse. Zeitschrift für Gerontopsychologie & -Psychiatrie 12: 85–96. Meyer, Martha 2005. Pflegende Angehörige in Deutschland: Überblick über den derzeitigen Stand und zukünftige Entwicklungen. Institut für Medizin-Soziologie im Universitätsklinikum Hamburg-Eppendorf. http://www.uke.de/extern/eurofamcare/documents/nabares/nabare_germany_de_final_a4.pdf. Accessed 26 Sept 2019. Michoń, Piotr. 2008. Familisation and defamilisation policy in 22 European countries. Poznan University of Economics Review 8 (1). Miller, Benjamin. 2016. Theorizing legal needs: Towards a caring legal system. Dissertation, Université d’Ottawa/University of Ottawa, Canada. https://www.researchgate.net/publication/308593953_Theorizing_Legal_Needs_Towards_a_Caring_Legal_System. Accessed 12 Feb 2020. Motel-Klingebiel, Andreas, and Clemens Tesch-Römer. 2006. Familie im Wohlfahrtsstaat-­ zwischen Verdrängung und gemischter Verantwortung. Zeitschrift für Familienforschung 18: 290–314. Motel-Klingebiel, Andreas, Clemens Tesch-Römer, and Hans-Joachim Kondratowitz. 2005. Welfare states do not crowd out of the family: Evidence for mixed responsibility from comparative analyses. Ageing and Society 25: 863–882. Müller, Irene, Mertin Matthias, J. Beier, and C. Them. 2008. Die häusliche Betreuung demenzkranker Menschen und ihre Auswirkungen auf pflegende Angehörige—eine Literaturübersicht. Österreichische Pflege-Zeitschrift 61: 8–12. OECD. 2017. Informal carers. In Health at a glance 2017, ed. Organisation for Economic Co-operation and Development, 208–209. Paris: OECD. Pinquart, Martin, and Silvia Sörensen. 2002. Interventionseffekte auf Pflegende Dementer und andere informelle Helfer: Eine Metaanalyse. Zeitschrift für Gerontopsychologie & –psychiatrie 15: 85–100. Plöthner, Marika, K. Schmidt, Lea de Jong, Jan Zeidler, and Kathrin Damm. 2019. Needs and preferences of informal caregivers regarding outpatient care for the elderly: A systematic literature review. BMC Geriatrics 19: 82. Prince, Martin, Martin Knapp, Maëlenn Guerchet, Paul McCrone, Matthew Prina, Adelina Comas-Herrera, Raphael Wittenberg et al. 2014. Dementia UK. Second Edition—Overview. Alzheimer’s Society. http://eprints.lse.ac.uk/59437/1/Dementia_UK_Second_edition_-­_ Overview.pdf. Accessed 27 Sept 2019.

160

M. Kaiser et al.

Sander-Staudt, Maureen. 2019. Care ethics. Internet Encyclopedia of Philosophy. https://www.iep. utm.edu/care-­eth/#H2. Accessed 26 September 2019. Schäufele, Martina, L.  Köhler, S.  Lode, and S.  Weyerer. 2007. Welche Faktoren sind mit subjektiver Belastung und Depressivität bei Pflegepersonen kognitiv beeinträchtigter älterer Menschen assoziiert? Ergebnisse einer repräsentativen Studie in Deutschland. Zeitschrift für Gerontopsychologie & -Psychiatrie 4: 197–210. Schwarzenbach, Sibyl A. 1996. On civic friendship. Ethics 107: 97–128. Schwenk, Gertrud. 2017. Pflegeheim und Hospizdienst: Kooperation in Spannungsfeldern. Zusammenwirken zweier Organisationstypen—eine qualitative Studie. Esslingen: der hospiz verlag. Seidl, Elisabeth, and Sigrid Labenbacher. 2007. Pflegende Angehörige im Mittelpunkt. Wien: Böhlau. Sévigny, Andrée, Serge Dumont, Robin S. Cohen, and Annie Frappier. 2010. Helping them live until they die: Volunteer practices in palliative home care. Nonprofit and Voluntary Sector Quarterly 39: 734–752. Stacey, Clare L., and L.L. Ayers. 2012. Caught between love and money: The experiences of paid family caregivers. Qualitative Sociology 35: 47–64. Statista. 2019. Statistiken zum Thema Demenz weltweit. https://de.statista.com/themen/2032/ demenzerkrankungen-­weltweit/. Accessed 4 Sept 2019. Stensöta, Helena O. 2010. The conditions of care: Reframing the debate about public sector ethic. Public Administration Review 70: 295–303. Stolee, Paul, C. Christine Zaza, and Michael T. Sharratt. 2014. Later life care planning conversations for older adults and families. Journal of Applied Gerontology 33: 710–736. Szelewa, Dorota, and Michael P. Polakowski. 2008. Who cares? Changing patterns of childcare in Central and Eastern Europe. Journal of European Social Policy 18 (2): 115–131. ter Meulen, Ruud, and Jan van der Made. 2000. The extent and limits of solidarity in Dutch health care. International Journal of Social Welfare 9: 250–260. Tronto, Joan. 2010. Creating caring institutions: Politics, plurality, and purpose. Ethics and Social Welfare 4: 158–171. Twigg, Julia. 1989. Models of carers: how do social care agencies conceptualise their relationship with informal carers? Journal of Social Policy 18: 53–66. United Nations. 2019. World population prospects 2019: Ten key findings. https://population. un.org/wpp/Publications/Files/WPP2019_10KeyFindings.pdf. Accessed 10 Dec 2019. van Kempen, Janneke A.L., Sarah H.M. Robben, Sytse U. Zuidema, Marcel G.M. Olde Rikkert, René J.F. Melis, and Henk J. Schers. 2012. Home visits for frail older people: A qualitative study on the needs and preferences of frail older people and their informal caregivers. British Journal of General Practice 62: 554–560. Varik, Merel, Marju Medar, and Kai Saks. 2020. Informal caregivers’ experiences of caring for persons with dementia in Estonia: A narrative study. Health and Social Care in the Community 28 (2): 448–455. Vasileiou, Konstantina, Julie Barnett, Manuela Barreto, John Vines, Mark Atkinson, Shaun Lawson, and Michael Wilson. 2017. Experiences of loneliness associated with being an informal caregiver: A qualitative investigation. Frontiers in Psychology 8: 585. Von Ballmoos, Christoph, and B. Despland. 2010. Pflegende Angehörige und Krankenversicherung (KVG): Voraussetzung und Modalitäten der Vergütung von Pflegeleistungen. Wissenschaftlicher Bericht. Ward-Griffin, Catherine, Judith B.  Brown, Oona St-Amant, Nisha Sutherland, Anne Martin-­ Matthews, Janice Keefe, and Mickey Kerr. 2015. Nurses negotiating professional-familial care boundaries: Striving for balance within double duty caregiving. Journal of Family Nursing 21: 57–85. Werhane, Patricia H. 2003. Business ethics, organization ethics and systems ethics for health care. In Institutional integrity in health care, ed. A.S. Iltis, 73–98. Dordrecht: Springer.

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Wilz, Gabriele, C.  Adler, T.  Gunzelmann, and E.  Brähler. 1999. Auswirkungen chronischer Belastungen auf die physische und psychische Befindlichkeit. Zeitschrift für Gerontologie und Geriatrie 32: 255–265. Wilz, Gabriele, C.  Adler, and T.  Gunzelmann. 2001. Gruppenarbeit mit Angehörigen von Demenzkranken: Therapeutische Praxis. Göttingen: Hogrefe. Work and Pensions Committee. 2018. Employment support for carers. Thirteenth report of session 2017–19. House of Commons. https://publications.parliament.uk/pa/cm201719/cmselect/ cmworpen/581/581.pdf. Accessed 27 Sept 2019. Wright, John, Rhys Williams, and John R.  Wilkinson. 1998. Development and importance of health needs assessment. BMJ 316: 1310–1313. Wulff, Joseba, Agneta Malmgren Fänge, Connie Lethin, and Carlos Chiatti. 2020. Self-reported symptoms of depression and anxiety among informal caregivers of persons with dementia: A cross-sectional comparative study between Sweden and Italy. BMC Health Services Research 20: 1114. Zigante, Valentina. 2018. Informal care in Europe. Exploring formalisation, availability and quality. Luxembourg: European Commission. Mara Kaiser  is a PhD Candidate and Research Assistant at the Chair for Care Policy and Nursing Ethics at the Philosophical-Theological University of Vallendar, Germany. She holds a Master in Nursing Science (MSc, 2017) and also works ­part-­time as a nurse in a German hospice. Mara is interested in the research field of palliative care and the implementation and improvement of the palliative care concept within different settings. In particular, she focuses on narrative and participatory research methods and theoretical and practical approaches of Care Ethics. Eva Kuhn  is affiliated with the Section Global Health (IHPH) at the University Hospital Bonn. Eva has an academic background in Catholic theology and law. Her main fields of research are digital (mental) health ethics, healthy work for health-care workers including professional ethics and occupational health ethics. She is certified as a Healthcare Ethics Counselor and particularly dedicated to practice-oriented academic teaching. Christopher Poppe  is a PhD Candidate and Research Assistant at the Institute for Biomedical Ethics (IBMB) at the University of Basel, Switzerland. He holds a Master in Clinical Psychology and Psychotherapy (MSc, 2016) from the University of Kassel, Germany, and subsequently studied philosophy at Humboldt University of Berlin and the University of York, UK.  At IBMB, Christopher works on the supportive needs of informal caregivers of patients with amyotrophic lateral sclerosis. In general, Christopher is interested in palliative care, methodology of biomedical ethics, as well as ethics of care, broadly construed. Henrike Voß  holds a doctorate of the University of Heidelberg. She was part of the graduate program “People with Dementia in Acute-care Hospitals” at the Network Ageing Research in Heidelberg from October 2016 to October 2020. Her doctoral thesis is dedicated to the question “What attaches people with dementia to life? A broader perspective on Advance Care Planning”. Basically, Henrike graduated from nursing, then studied Nursing Education and Theatre Pedagogy and completed a Master’s degree in Gerontology. She has been dealing with end-of-life issues for a considerable time and has been working with the topic of dementia on a practical, theoretical and scientific as well as ethical-philosophical level for more than 15 years.

Part III

Treatment Preferences and Professional Companionship at the End of Life

Chapter 10

Maltese Perspectives on Breaking Bad News in Cancer: An Assessment of Patients’ Preferences Joëlle Azzopardi, Dorothy Galea Gauci, Patricia A. Parker, Neville Calleja, Jeff A. Sloan, and Raymond Zammit

10.1  Introduction Cancer is a significant disease in Malta, with 1200 Maltese residents presenting with new cancers each year (National Cancer Platform 2020). A diagnosis of cancer goes hand in hand with breaking bad news, which is usually delivered by hospital doctors as the majority of investigations are hospital-based. To break bad news effectively, physicians must devote time to the patient, giving information J. Azzopardi (*) Gozo General Hospital, Victoria, Malta e-mail: [email protected] D. G. Gauci National Statistics Office, Valletta, Malta Department of Health Services Management, Faculty of Health Sciences, University of Malta, Msida, Malta e-mail: [email protected] P. A. Parker Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA e-mail: [email protected] N. Calleja Faculty of Medicine & Surgery, Mater Dei Hospital, University of Malta, Msida, Malta e-mail: [email protected] J. A. Sloan Mayo Clinic, Rochester, MN, USA e-mail: [email protected] R. Zammit University of Malta, Msida, Malta e-mail: [email protected] © Springer Nature Switzerland AG 2022 A.-H. Seidlein, S. Salloch (eds.), Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives, Philosophy and Medicine 141, https://doi.org/10.1007/978-3-030-83186-8_10

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accordingly, answering any questions that may arise and dealing with the aftermath of such disclosure. Truth-telling is becoming increasingly advocated and offers far-reaching benefits to all involved (Munoz Sastre et al. 2011). It is also necessary if patients are to participate in their health care plans (Aquilina et al. 2018). From a medical point of view, bad news has been defined as: “any information which adversely and seriously affects an individual’s view of his or her future” (Buckman 1992, p. 15). This can be viewed on two levels: a level at which life is temporarily interrupted, such as replacing a hip joint, and a deeper level which threatens the continuity of life, as is the case with a malignant disease (Rassin et al. 2006.) Unfortunately, the field of oncology is riddled with bad news, ranging from disclosure of a diagnosis, through treatment failure, to the recurrence of disease and end-of-life issues. The way bad news is broken can have a profound effect on improving patients’ compliance with treatment, may lead to a clearer understanding of instructions or symptoms, help reduce stress and anxiety, and improve overall patient satisfaction (Parker et al. 2001; Ellis and Tattersall 1999). On the other hand, bad news delivered inappropriately or insensitively may exert a lasting impact on the ability to adapt and adjust, whilst also inviting the risk of litigation (Fallowfield and Jenkins 2004). Inappropriate delivery of unfavourable news includes usage of unfamiliar medical jargon or giving scanty information. Recipients of such messages may feel confused, anxious or angry (Rassin et al. 2006). In recent decades there has been a dramatic shift towards disclosure of a diagnosis of cancer in Western Countries, especially in North America, Australia and most of Europe (Ellis and Tattersall 1999). The previous paternalistic attitude favouring concealment in order to protect the patient has become overshadowed by the growing importance of safeguarding patient autonomy (Salander 2002). Patients are considered to have a moral and legal right to receive accurate and reliable information, and it remains the doctor’s responsibility to deliver the diagnosis accurately and explain treatment options clearly (Rassin et al. 2006). The content of discussions needs to be honest, so that patients can provide informed consent about their treatment (Fallowfield and Jenkins 2004). This is helping to move the issue of patient autonomy forward in the right direction: patients are now better informed and more respected (Salander 2002). There are a number of culturally constructed coping behaviours when it comes to terminal cancer care. Although merely anecdotal, there is a sense that withholding the truth from patients in Malta seems to be one such behaviour that family members use to cope with the trauma of having a loved one diagnosed with cancer. It remains unclear why family members oppose their loved ones knowing their diagnosis. In a survey of Spanish non-cancer patients’ preferences for being informed of their diagnosis, practically all said they would want to know, in full or in part – yet 70% of those same respondents said they would not want to tell

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their relative who has cancer (Arraras et  al. 1995). Although not formally studied in Malta, this is thought to be the prevalent attitude amongst the Maltese population. As far back as 1984, Jay Katz argued in his book The Silent World of Doctor and Patient against a one-way trust of a doctor-patient relationship which, 30 years on, is still very relevant today. The American physician and Yale Law School professor criticises doctors for encouraging patients to relinquish their autonomy and argues for the rights and needs of the patient which cannot be embraced in a world of silence on the part of the physician. Katz, who devoted his career to addressing complicated issues in medical ethics, goes on to say that excluding the patient from shared decision-making goes against autonomy and human dignity (Katz 1984). This concept is clearly resounded by Beauchamp and Childress (2001) in their classic work Principles of Biomedical Ethics (Beauchamp and Childress 2001). Respect for autonomy, beneficence and non-maleficence all take centre stage when it comes to truth-telling about a diagnosis. Failing to disclose the truth clearly goes against the principle of respect for autonomy; indeed, it goes against the more fundamental ‘respect for persons’ principle highlighted both by the Belmont Report (NCPHSBBR 1976) as well as by Immanuel Kant (Kant 1997), the eighteenth-­ century philosopher who argued persuasively for the inherent dignity of all human beings. The way in which unfavourable news is delivered to patients can have a profound and lasting effect on them as people: if done in the correct manner, it allows for trust in the physician, understanding, adjustment and hope for the future. Conversely, if bad news is delivered hurriedly and in a callous manner, the consequences are commonly anxiety, denial, long-lasting distress and resentment of the health-care professional (Fallowfield and Jenkins 2004). Fallowfield, Jenkins, and Beveridge (2002) believe that “a conspiracy of silence usually results in a heightened state of fear, anxiety and confusion, not one of calm and equanimity” (p.  297). Indeed, avoidance of bad news discussions can have serious consequences not only on patients and their families but also on the health-care system, since “patients lose good time with their families and for reflection, and spend more time in the hospital and intensive care unit” (Mulcahy 2012). There is no data regarding preferences about truth-telling to patients in Malta. A Patient Charter document was only recently brought into effect locally (Ministry for Health, the Elderly and Community Care 2011c). Principle 4 of the Charter deals with Shared Decision-Making and Informed Consent, specifying that “one has the right to participate in the collaborative process of decision making related to one’s particular healthcare needs and to make an informed consent about one’s treatment and care” (p.  13). Our research, therefore, fits in with the climate in which changes are being made locally in the field of shared decision-making.

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10.2  Patients and Methods 10.2.1  Aims and Objectives The intention of this cross-sectional survey was to address unchartered territory regarding the evaluation of preferences of Maltese cancer patients for receiving bad news. These include: • utilisation of the Measure of Patient Preferences (MPP) Questionnaire (Parker et al. 2001) to assess preferences of the Maltese population for characteristics of the bad news encounter; • evaluate how these compare with international studies using the MPP; • make use of the Control Preferences Scale (CPS) (Degner et al. 1997) to gain understanding concerning how much patients are being involved in the decision-­ making process and their preferences for the degree of involvement they wish to experience; • to compare these results with other international studies using the CPS; • to assess whether demographic and medical variables are associated with patients’ preferences in both the MPP and CPS; and • to make local results available to local doctors with the aim of changing standard practice.

10.2.2  Participants and Procedures With a total Maltese population of over 400,000 people (Population in Malta 2020), Malta has one oncology centre, and the out-patient follow-up clinics were, therefore, considered an ideal location for recruiting patients for the study. A consecutive sample of oncology patients aged eighteen and over were approached in the waiting area by the researcher, who was not a member of the oncology team, and were invited to voluntarily complete an anonymous questionnaire in Maltese which would take around twelve minutes. The self-completed questionnaire was presented as a seven-page booklet consisting of an information sheet for patients, demographic and medical data to be filled by the patients and caring physician, and the questionnaires themselves. Field work was carried out every day for two consecutive weeks. The researcher was available at all times to answer any queries and respondents were also furnished with a leaflet about the nature of the study and contact details of the researcher. Inclusion criteria were: diagnosis of any type of solid tumour cancer at least a month prior to the interview, having received at least one type of treatment (chemotherapy, radiotherapy, hormonal or other therapy), awareness of a cancer diagnosis and Maltese literacy. Exclusion criteria were: aged younger than eighteen, non-­ natives, non-cancer diagnosis and a diagnosis less than one month prior to the

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fieldwork. Permission was sought from the Data Protection Board and University Research Ethics Committee of the University of Malta prior to the commencement of the research. The questionnaire delivered to patients was bipartite, consisting of the Measure of Patient Preferences (MPP) Questionnaire questionnaire and the Control Preferences Scale  (CPS). The 32-item MPP is scored on a five-point scale (1–5) where 1 = not at all important, 2 = optional, can take it or leave it, 3 = important, 4 = very important, and 5 = essential. The MPP was initially developed in the United States by Parker et al. (2001) and used to assess preferences for characteristics of the bad news encounter. Preferences relate to three aspects: ‘facilitation’: the setting in which the news is delivered, the ‘content’ of the message, and the ‘support’ offered. The two-item CPS, developed in Canada by Degner, Sloan, and Venkatesh (1997) was used to understand to what degree patients are being involved in the decision-making process. This five-point (A–E) self-reported scale assesses patients’ preferences for control in medical decision-making, ranging from a wholly active role (A) through to a wholly passive role (E). The tool allows respondents to portray how they were involved in treatment decisions (CPS1) and then express how they would have liked to have been involved (CPS2).

10.2.3  Outcome Measures A total of 269 patients were approached to participate in the study, of which 17 met the exclusion criteria. All returned questionnaires were valid, in that most responses had been filled in and could, therefore, be used for analysis. Permission was obtained from the authors of the MPP and CPS, who are also the authors of this research, to utilise their questionnaires. The questionnaires were translated from English into Maltese by a senior lecturer of the Maltese language, followed by a conceptual translation by the same senior lecturer to ascertain that concepts were understood in the same way, and to ensure cultural acceptability of the questionnaire. The corrected questionnaire then underwent cognitive debriefing, whereby it was actively tested among representatives of the target population to assess whether it was being understood in the same way as the original would have been. Following the amendments made, the product tool was considered to be reliable for usage in the Maltese sample population. Validity testing was not necessary since this had already been done by Parker et  al. (2001) and Degner, Sloan, and Venkatesh (1997) in their respective studies which produced the MPP and CPS. The questionnaire was then piloted prior to actual usage. This refers to a small-scale version of the study where readability of the tool is tested, while giving advance warning about where the main research project could fail, or whether the proposed tool is inappropriate or too complicated. Twenty consecutive patients attending the oncology out-patient clinic on one day were administered the questionnaire in much the same way as the actual participants would later be recruited. Minor changes were then made to the formatting of the questionnaire booklet.

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10.2.4  Demographics and Medical Data Demographic information, including gender, age, marital status and educational level, was collected. Participants supplied information on the stage of the disease and its recurrence status, while their physicians gave additional information on the type of cancer, date of diagnosis, stage of disease and recurrence, and treatment given (Table 10.1).

Table 10.1  Demographic and medical characteristics of the population sampled Characteristics Mean time from diagnosis Gender (n = 199)  Male  Female Mean age (n = 199) Marital status (n = 199)  Married/living with partner  Widowed  Single  Separated/divorced Level of education reached (n = 197)  Primary  Secondary or post-secondary  Tertiary or post graduate Employment status (n = 198)  Domestic tasks  Retired  Employed  Unemployed Cancer type (n = 196)  Breast  Gastrointestinal tract  Prostate  Gynaecological  Urological  Haematological  Lung  Thyroid  Other cancers Cancer recurrence (n = 196)  Yes  No  Mean time

% (n) 4.4 years (SD 4.48) 32.7 (65) 67.3 (134) 62.2 years (SD 12.6 years) 68.3 (136) 12.6 (25) 12.6 (25) 6.5 (13) 41.6 (82) 41.1 (81) 17.2 (34) 40.9 (81) 31.3 (62) 24.3 (48) 3.5 (7) 37.8 (74) 13.8 (27) 9.2 (18) 7.1 (14) 7.1 (14) 6.6 (13) 5.6 (11) 5.6 (11) 7.1 (14) 21.9 (43) 78.1 (153) 2.49 years (SD 2.68)

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10.2.5  Statistical Analysis Descriptive statistics were presented for demographic and medical characteristics of the sample, while a univariate analysis was conducted to examine independent associations between respondents’ demographic and clinical characteristics and the MPP and CPS data. Since the MPP is assessed through scores, tests for differences between means were used: t-tests and one-way ANOVA were used as applicable. Odds ratios (ORs) were used for the CPS categorical data to assess independent associations between the demographic variables and the CPS category. These associations were then assessed using multinomial regression analysis, while adjusting for any possible confounding factors. A p