Pediatric Collections: Ethics Rounds: A Casebook in Pediatric Bioethics Part II 1610026683, 9781610026680

Citation preview

Pediatric Collections

Ethics Rounds: A Casebook in Pediatric Bioethics Part II Edited by Armand H. Matheny Antommaria, MD

Pediatric Collections

Ethics Rounds: A Casebook in Pediatric Bioethics Part II EDITED BY: Armand H. Matheny Antommaria, MD, PhD, FAAP, HEC-C Director of the Ethics Center, the Lee Ault Carter Chair of Pediatric Ethics Professor of Pediatrics and Surgery at Cincinnati Children’s Hospital Medical Center Professor of Pediatrics and Surgery at the University of Cincinnati College of Medicine Associate Editor, Pediatrics

Published by the American Academy of Pediatrics 345 Park Blvd. Itasca, IL 60143 The American Academy of Pediatrics is not responsible for the content of the resources mentioned in this publication. Web site addresses are as current as possible but may change at any time. Products are mentioned for information purposes only. Inclusion in this publication does not imply endorsement by the American Academy of Pediatrics. © 2022 American Academy of Pediatrics. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means—electronic, mechanical, photocopying, recording, or otherwise—without prior written permission from the publisher. Printed in the United States of America APC031 Print ISBN: 978-1-61002-668-0 eBook ISBN: 978-1-61002-669-7

Pediatric Collections

Ethics Rounds: A Casebook in Pediatric Bioethics Part II Table of Contents Ethics Rounds: A Casebook in Pediatric Bioethics Part II

vii

By Armand H. Matheny Antommaria, MD, PhD, FAAP, HEC-C

Autism Spectrum Disorder

3 Introduction 7 Should Tactile Defensiveness Exclude a Life-Sustaining Intervention in an Adolescent With Autism? 11 19 26

Ethics Rounds | Original Publication | February 1, 2022

Presymptomatic Detection and Intervention for Autism Spectrum Disorder Ethics Rounds | Original Publication | May 1, 2021 Ethical Implications for Providers Regarding Cannabis Use in Children With Autism Spectrum Disorders Special Article | Original Publication | February 1, 2019 Medical Therapy for Inappropriate Sexual Behaviors in a Teen With Autism Spectrum Disorder Ethics Rounds | Original Publication | April 1, 2016

Child Abuse and Neglect

35 Introduction 37 Pediatric Discharge From the Emergency Department Against Medical Advice 44 50 56 62 68 74 79 84 90

Ethics Rounds | Original Publication | December 3, 2021 A Complicated Case of Vaccine Refusal Ethics Rounds | Original Publication | October 1, 2020

For Victims of Fatal Child Abuse, Who Has the Right to Consent to Organ Donation? Ethics Rounds | Original Publication | September 1, 2020 When Specialty Care Is Unavailable to Rural Familes Special Article | Original Publication | December 1, 2019 Failure to Provide Adequate Palliative Care May Be Medical Neglect Ethics Rounds | Original Publication | October 1, 2019 When a Child Needs a Transplant but Lacks Familial Social Support Ethics Rounds | Original Publication | January 1, 2019 Child Abuse, Incarceration, and Decisions About Life-Sustaining Treatment Ethics Rounds | Original Publication | December 1, 2018 Medical Marijuana for Minors May Be Considered Child Abuse Ethics Rounds | Original Publication | October 1, 2018 Parents Refusing Dialysis for a 3-Month-Old With Renal Failure Ethics Rounds | Original Publication | March 1, 2018 An 8-Year-Old Foster Child With Behavioral Problems Who Needs a Bone Marrow Transplant Special Article | Original Publication | November 1, 2012

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

iii

COVID-19 and Racism

97 Introduction 101 Microaggressions: Privileged Observers’ Duty to Act and What They Can Do 108 115 121 127 133

Ethics Rounds | Original Publication | December 1, 2021

Should a Healthcare System Facilitate Racially Concordant Care for Black Patients? Ethics Rounds | Original Publication | October 1, 2021 Assessing Visitor Policy Exemption Requests During the COVID-19 Pandemic Ethics Rounds | Original Publication | August 1, 2021 Pediatric Palliative Care in a Pandemic: Role Obligations, Moral Distress, and the Care You Can Give Ethics Rounds | Original Publication | July 1, 2021 When a Family Requests a White Doctor Ethics Rounds | Original Publication | August 1, 2015 Off-Label Prescription of COVID-19 Vaccines in Children: Clinical, Ethical, and Legal Issues Ethics Rounds | Original Publication | January 11, 2022

Adolescents and Young Adults

143 Introduction 147 Can Parents Restrict Access to Their Adolescent’s Voice?: Deciding About at Tracheostomy 153 159 164 170 176 183 188 193

Ethics Rounds | Original Publication | April 1, 2021

Opioid Management in the Dying Child With Addiction Ethics Rounds | Original Publication | February 1, 2021 Parents Demand and Teenager Refuses Epidural Anesthesia Ethics Rounds | Original Publication | June 1, 2020 “Take Out This Thing”: A Teen’s Decision About Removal of a Gastronomy Tube Ethics Rounds | Original Publication | March 1, 2020 Long-Term Puberty Suppression for a Nonbinary Teenager Ethics Rounds | Original Publication | February 1, 2020 Fertility Preservation for a Transgender Teenager Ethics Rounds | Original Publication | September 1, 2018 Research Consent at the Age of Majority: Preferable but not Obligatory Ethics Rounds | Original Publication | August 1, 2018 Reconsidering the Need for Reconsent at 18 Ethics Rounds | Original Publication | August 1, 2018 Ethical Challenges Raised by OpenNotes for Pediatric and Adolescent Patients Ethics Rounds | Original Publication | June 1, 2018

200 Should a Teenager Be Allowed to Leave the Hospital AMA to Attend His Father’s Funeral? Ethics Rounds | Original Publication | May 1, 2018

205 A Young Adult Jehovah’s Witness With Severe Anemia 210

iv

Ethics Rounds | Original Publication | September 1, 2013

A “Narcotics Contract” for a Patient With Sickle Cell Disease and Chronic Pain Special Article | Original Publication | July 1, 2011

PEDIATRIC COLLECTIONS

Social Media

217 Introduction 219 Seeking a Second Opinion on Social Media 223

Ethics Rounds | Original Publication | November 1, 2019

In the Eye of a Social Media Storm Ethics Rounds | Original Publication | September 1, 2016

Cardiology

231 Introduction 233 Controversy About Withdrawal of Postresuscitation Care After Cardiac Arrest 239 245

Ethics Rounds | Original Publication | August 1, 2020

Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome Ethics Rounds | Original Publication | May 1, 2019 Unilateral Withdrawal of Life-Sustaining Therapy in a Severely Impaired Child Ethics Rounds | Original Publication | November 1, 2018

250 Parental Refusal of Surgery in an Infant With Tricuspid Atresia 257 262

Ethics Rounds | Original Publication | November 1, 2016

Trisomy 18 and Complex Congenital Heart Disease: Seeking the Threshold Benefit Ethics Rounds | Original Publication | July 1, 2013 Controversy About a High-Risk and Innovative Fetal Cardiac Intervention Ethics Rounds | Original Publication | September 1, 2018

About AAP Pediatric Collections Pediatric Collections is a series of selected pediatric articles that highlight different facets of information across various AAP publications, including AAP Journals, AAP News, Blog Articles, and eBooks. Each series of collections focuses on specific topics in the field of pediatrics so that you can keep up with best practices, and make an informed response to public health matters, trending news, and current events. Each collection includes previously published content focusing on specific topics and articles selected by AAP editors. Visit http://collections.aap.org to view a list of upcoming collections.

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

v

Ethics Rounds: A Casebook in Pediatric Bioethics Part II Collection Introduction Armand H. Matheny Antommaria, MD, PhD, FAAP, HEC-C Director of the Ethics Center, the Lee Ault Carter Chair of Pediatric Ethics; Professor of Pediatrics and Surgery at Cincinnati Children’s Hospital Medical Center; Professor of Pediatrics and Surgery at the University of Cincinnati College of Medicine; Associate Editor, Pediatrics Ethics Rounds, a regular feature in Pediatrics, the flagship journal of the American Academy of Pediatrics, includes cases on a wide variety of topics—from the care of a child whose parents speak only the Guatemalan dialect Myan Chuj to the legalization of pediatric euthanasia in the Netherlands. One of the tasks of editing this volume, Ethics Rounds: A Casebook in Pediatric Bioethics Part II–a sequel to a previous entry in the AAP’s Pediatric Collections series in 2019– was selecting and organizing the articles. There were substantial limitations of categorizing them under the principles of respect for autonomy, beneficence, nonmaleficence, and justice. While creating a typology of paradigm cases might be more attractive, clinical ethicists do not agree on such a typology. The organization of this volume is therefore eclectic, including not only ethical issues but also conceptual ones and pediatric specialties. One potential way to organize the articles in this volume would be in terms of Tom L. Beauchamp and James F. Childress’ 4 principles of biomedical ethics. They argue that principles are 1 of 4 levels, or tiers, of moral justification. The levels, from the highest to the lowest level of abstraction and systemization, are: ethical theories, principles, rules, and judgments and actions. Rules, for example, are justified by appeal to principles. Beauchamp and Childress contend that principles are prima facie binding—they are binding on all occasions unless they are outweighed by a stronger principle(s). In the 4th edition of their text, they depart from this top-down model of justification in favor of a model that incorporates aspects of both top-down and bottom-up approaches: Moral theories are developed to illuminate moral experience and guide action, and moral experience is used to test and revise moral theories. This is called a coherence theory of justification. They also introduce the concepts of specification as well as weighing and balancing: “Whereas specification entails a substantive development of the meaning and scope of norms, balancing consists of deliberation and judgment about the relative weight of norms (32).” Respect for autonomy may, for example, be specified as following all clear and relevant formulations of an incompetent patient’s advance directives. Beauchamp and Childress contend that assigning 2 or more conflicting principles relative weights and strengths is a deliberative process, and they enumerate 6 conditions that must exist to prioritize 1 principle over another, eg, no morally preferable alternative actions are available. A typology of cases based on Beauchamp and Childress’ approach might look like a tree, with higher branches providing greater specificity, or a scientific table, with the different principles in both the row and column headings and individual cells indicating which principle takes precedence when they conflict. This is not, however, how we tend to think about ethical issues. For example, Beauchamp and Childress discuss informed consent and medical decision-making capacity under the principle of respect for autonomy. The elements of informed consent and the components of medical decision-making capacity do not, however, in any clear way derive from the principle of respect for autonomy. The principle must be supplemented by additional content to be specified in these ways. In terms of weighing and balancing, medical neglect might be seen as an example of beneficence or nonmaleficence having priority over respect for autonomy. In this case, however, these principles apply to 2 different people—beneficence or nonmaleficence

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

vii

to the child and respect for autonomy to the parent or family. The issue here is less about the relative weight of these principles than the role and responsibilities of parents. An alternative to principlism is casuistry. Rather than focusing on principles and rules and top-down or deductive justification, casuistry focuses on cases and analogies. Established and clear cases, called paradigms, carry conclusive weight absent exceptional circumstances. Issues arise with marginal or ambiguous cases or cases that match 2 or more conflicting paradigms. Albert R. Jonsen and Stephen Toulmin argue that finding analogies—comparing the circumstances of the present case to those of paradigmatic cases—helps to resolve these issues. They also claim that the history of reflection on the issue may contribute to its resolution; the procedures used to resolve earlier cases can be reapplied to new ones. At times, however, novel, unprecedented cases arise that require new paradigms. Conclusions are presumptive and revisable, and individuals may interpret marginal or ambiguous cases differently. While this does not provide certainty or proof, neither is it a matter of local custom or individual preference. Jonsen and Toulmin contend that rules, maxims, or principles are developed inductively from paradigmatic cases that have greater epistemological certainty. Critics note that our intuitions have been wrong and argue that casuistry possesses inadequate resources for radial critique or analysis of power relations. Jonsen and Toulmin note that ethical theories also are historically situated. Jeremy Bentham’s utilitarianism addressed legislators’ responsibility in constitutional and representative systems of government that arose after the expulsion of the Stuarts, and John Rawls’ theory of justice addressed the history of American racial discrimination. Regarding the relationship between cases and ethical theory, Jonsen and Toulmin argue that ethical theory does not resolve cases; it is a complementary activity rather than an alternative version of the same activity. They draw an analogy to the relationship between the basic sciences and clinical medicine. Clinical medicine is informed by the basic sciences, but individual diagnostic and treatment decisions are not clearly justified by or deducible from them. Unfortunately, there is not a widely accepted typology of types of ethical issues or cases. Jennifer E. deSante-Bertkau, Michelle L. McGowan, and I conducted a systemic review of typologies used to characterize clinical ethics consultations and identified 27 unique typologies. Each one contained between 5 and 47 (mean = 18) categories. The most common categories were do-not-attempt-resuscitation orders (19, 70%), capacity (18, 67%), withholding (18, 67%), withdrawing (17, 63%), and surrogate or proxy (16, 59%). Only 7 (26%) typologies contained all 5 of the most common categories. In addition to this lack of consensus on the categories, the types of categories also varied significantly. They included principles, such as autonomy and justice; ethical issues, such as futility, informed consent, and hastening death; concepts rather than principles, such as capacity or death; and medical subspecialities, such as reproductive health and psychiatry. The sections in this volume are likewise heterogeneous. Child abuse and neglect and cardiology are pediatric specialties. Pediatricians within these specialties encounter certain ethical issues more frequently than other pediatricians do. Child abuse pediatricians, for example, encounter issues regarding conflict of interests, privacy, beneficence, and nonmaleficence. The paradigm case of medical neglect is parents who are Jehovah’s Witnesses and refuse a life-saving blood transfusion for their child. Marginal cases, analyzed in this section, include those in which the risk of death or serious disability is less imminent, the potential benefits of treatment lower, or the potential risks of treatment higher.

viii

PEDIATRIC COLLECTIONS

Other sections focus on conceptual issues that inform ethical decision making. The section on autism spectrum disorder, for example, addresses whether autism should be considered as a disease to be cured or treated, a disability to be ameliorated by increasing social supports, or another aspect of natural variation. How one conceptualizes autism has a significant effect on how one talks about and interacts with autistic individuals or people with autism. The section on adolescents and young adults potentially considers different models of decision making. I hope that you will be able to identify the key features in each section and apply them to similar cases that you encounter in your clinical practices. References 1. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Oxford University Press; 1979. 2. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 4th ed. Oxford University Press; 1994. 3. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 4th ed. Oxford University Press; 1994. 4. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 4th ed. Oxford University Press; 1994. 5. Jonsen AR, Toulmin S. The Abuse of Casuistry: A History of Moral Reasoning. University of California Press; 1988. 6. Arras JD. Getting down to cases: the revival of casuistry in bioethics. J Med Philos. Feb 1991;16(1):29-51; doi:10.1093/jmp/16.1.29 7. Jonsen AR, Toulmin S. The Abuse of Casuistry: A History of Moral Reasoning. University of California Press; 1988. 8. deSante-Bertkau JE, McGowan ML, Antommaria AHM. Systematic review of typologies used to characterize clinical ethics consultations. J Clin Ethics. 2018 29(4):291-304; PMID: 30605439

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

ix

Autism Spectrum Disorder

Autism Spectrum Disorder The care of individuals with autism spectrum disorder or autistic persons involves not only ethical issues but also important conceptual ones. The conceptual issues include what to call individuals with autism, whether it should be considered a disease to be cured, and what the goals of treatment should be. Within the medical profession, the diagnostic categories and epidemiology of autism have undergone significant changes in the past 50 years. This time period also has seen the emergence of the autistic self-advocacy movement. The important claims of this movement—identity-first language is preferable, autism is part of natural neurodiversity, attempts to cure it are misplaced, and certain treatment approaches exacerbate patients’ discomfort—are unfortunately not readily accessible to health care providers. The relevance of these conceptual claims can be seen in the articles in this section’s resolution of ethical dilemmas. There have been significant changes in the diagnostic categories and epidemiology of autism over the last 50 years. Autism initially was described by Leo Kanner in 1943. For a time, it was thought to be the earliest manifestation of schizophrenia. It entered the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders in its 3rd edition (DSM-III 1980) as a subtype of pervasive developmental disorder (PDD). Over subsequent editions, infantile autism was renamed autistic disorder (DSM-III-R 1987), and Asperger syndrome was added (DSM-IV 1994). Currently (DSM V 2013), the subcategories of PDD have been consolidated, and PDD has been replaced by autism spectrum disorder (ASD).1 The prevalence of autism diagnoses also has increased; from 1 in 2,000 children in the 1970s to 1 in 44 today.2 The causes of this increase are not clear. Potential causes include the aforementioned changes in the diagnostic definitions, diagnostic accretion (children who start with a diagnosis other than autism receiving the additional diagnosis of autism), diagnostic expansion (children at the lower end of the severity spectrum, who previously were not diagnosed with autism, now receiving the diagnosis of autism), increased awareness of its signs and symptoms, increased prevalence of its risk factors (eg, increased parental age at birth), and administrative and program policy changes.3 In the 1990s, autistic self-advocates, individuals with autism who advocate for themselves and others with autism, began to reconceptualize the condition. Because much of this advocacy occurred in within groups of autistic individuals and in online forums, it unfortunately is not well reflected in the medical literature. The citations of source material below, for example, include newsletters and magazines. An illustration of this omission is a July 2021 article on autism spectrum disorder in Pediatrics in Review that states: “The work of the ASD selfadvocacy movement has helped many families, clinicians, researchers, and others understand the diversity opinions and experiences of people with ASD and, in turn, guide parenting and treatment strategies” without providing a reference.4 Autistic self-advocates contend that their mental traits are essential parts of their identities. Some, therefore, reject people-first language. (People-first language, in contrast to identity-first language, describes persons as having conditions rather than focusing on the conditions, eg, individuals with disabilities rather than the disabled or disabled individuals.) Jim Sinclair, for example, argues that saying “person with autism” inappropriately suggests that autism can be separated from the person, it is not an important or essential part of the person, or that it is bad. As examples, he notes that while we say “a person with a purple shirt,” we do not generally say “a person with maleness” or “a person with athleticism.” He concludes, “I am autistic because I accept and value myself the way that I am.”5 These claims involve not only individual, but also collective identity. Some self-advocates and scholars discuss autistic individuals as having a distinctive culture comparable to deaf culture.6

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

3

Autistic self-advocates and some scholars emphasize that neuropsychiatric conditions exist along a spectrum, or, in other words, that people exhibit significant neurodiversity. For traits that are broadly distributed, there is the issue of how one demarcates the normal from the pathological, eg, how narrowly one defines normal. Some traits may have both positive and negative characteristics that are inseparable from one another. For example, autistic individuals may have difficulty focusing on the general patterns of wholes but have facility with seeing the parts of details. Whether a trait is perceived as positive or negative may depend on the context, and, drawing on a social model of disability, some autistic individuals have argued for greater understanding and social support.7 Other potential examples of neurodiversity include variations in mood and bipolar affective disorder. 8 These claims have implications for whether autism should be cured or how it should be treated. Some autistics argue that because autism is a difference rather than a disease, we should not seek to cure it. Any attempts at treatment, they argue, should focus on the autistic’s needs or preferences. Criticism of applied behavioral analysis (ABA), or some versions of it, for example, focus on its goal and its method. Ole Ivar Lovaas developed ABA in the 1960s. It uses behaviorist methods of reward and punishment to reduce autistic behavior such as stimming and to increase behaviors such as hugging and eye contact. In addition to criticisms of the clinical evidence supporting its use and its use of aversive therapy to deter behavior, some autistic people argue that ABA’s goal is to change autistic children’s behavior to make them appear “normal” rather than teaching them skills. They argue that some of the behavior the ABA attempts to distinguish are ways to communicate or self-soothe, and that ABA forces individuals to endure unpleasant stimuli such as eye contact and florescent lighting. Some argue that the therapy should instead be used to help individuals improve their functioning in areas that they prioritize. These views, however, are not shared by all individuals with ASD. Some individuals who are more severely affected by autism argue that the neurodiversity movement does not represent them. Jonathan Mitchell describes himself, for example, as engaging in self-stimulatory behavior that prevents him from getting much done and as having motor coordination problems that impair his ability to write by hand and do other tasks. He reports he has never had a girlfriend and has been fired from more than 20 jobs. He contrasts his experience to neurodiversity proponents who are lawyers and are married with children. He states that he wishes to be cured from autism. Gwendolyn Kansen reports that her autism might be the reason that she is musically talented but that it also prevented her from achieving her potential—she could not keep up with the conductor’s cues or handle the bright stage lights. Academics Andrew Fenton and Tim Krahn distinguish high- and low-functioning autism, terminology not utilized in the DSM-V, and argue that while the former is not pathological, the latter is. Articles in the section address a number of these issues. Katherine E. MacDuffie and colleagues, for example, discuss the possibility of predictive testing and presymptomatic intervention for ASD. The commentators, including clinical psychologist and autistic self-advocate Lucas T. Harrington, consider the appropriate goals for such interventions. Loyal Coshway and colleagues discuss how to promote healthy sexuality in autistic individuals and analyze the potential benefits and risks of hormonal treatment to suppress inappropriate sexual behaviors. In “Should Tactile Defensiveness Exclude a Life-Sustaining Intervention in an Adolescent With Autism?,” Rena Sorensen considers the supports hospitals should have in place to care for autistic individuals undergoing complex, invasive procedures.

4

PEDIATRIC COLLECTIONS

References 1. Volkmar FR, McPartland JC. From Kanner to DSM-5: autism as an evolving diagnostic concept. Annu Rev Clin Psychol. 2014;10:193-212; doi: 10.1146/annurev-clinpsy-032813-153710. 2. Centers for Disease Control and Prevention. Data & statistics on autism spectrum disorder. CDC.org website. https://www.cdc.gov/ncbddd/autism/data.html. Updated March 2, 2022. Accessed September 4, 2022. 3. Halfon N, Kuo AA. What DSM-5 could mean to children with autism and their families. JAMA Pediatr. 2013;167(7):608-13; doi: 10.1001/jamapediatrics.2013.2188. 4. Long M, Register-Brown K. Autism spectrum disorder. Pediatr Rev. 2021;42(7):360-374; doi: 10.1542/pir.2020-000547. 5. Sinclair J. Why I dislike “person first” language. Available at http://www.larry-arnold.net/Autonomy/index.php/autonomy/ article/view/OP1/html_1. 1999. Accessed September 3, 2022. See also Sinclair J. Don’t mourn for us. Our Voice. 1993:1(3). Accessed September 3, 2022. Available at https://philosophy.ucsc.edu/SinclairDontMournForUs.pdf and Kripas-Kapit S. Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A cultural and intellectual history of neurodiversity’s first manifesto. In Autistic Community and the Neurodiversity Movement. Kapp S ed. Palgrave Macmillan. 23-39. 6. Glannon W. Neurodiversity. J Ethics Ment Health. 2007:2(2). Fenton A, Krahn T. Autism, neurodiversity and equality beyond the ‘normal.’ J Ethics Ment Health. 2007:2(2). 7. Fenton A, Krahn T. Autism, neurodiversity and equality beyond the ‘normal.’ J Ethics Ment Health. 2007:2(2). 8. Glannon W. Neurodiversity. J Ethics Ment Health. 2007:2(2). 9. DeVita-Raeburn E, Spectrum. Is the most common therapy for autism cruel? The Atlantic. August 11, 2016. Accessed September 3, 2022. Available at https://www.theatlantic.com/health/archive/2016/08/aba-autism-controversy/495272/. See also Dawson M. The misbehaviour of behaviourists: Ethical challenges to the autism-ABA industry. January 18, 2004. Accessed September 3, 2022. Available at https://www.sentex.ca/~nexus23/naa_aba.html. 10. Mitchell J. The danger of ‘neurodiversity:’ The neurodiversity movement claims that autism is not a problem. This is nonsense. The Spectator. January 19, 2019. Accessed September 3, 2022. Available at https://www.spectator.co.uk/ article/the-danger-of-neurodiversity-. 11. Kansen G. What the neurodiversity movement gets wrong about autism. Pacific Standard. June 14, 2017. Accessed September 3, 2022. Available at https://psmag.com/news/what-the-neurodiversity-movement-gets-wrong-about-autism. 12. Fenton A, Krahn T. Autism, neurodiversity and equality beyond the ‘normal.’ J Ethics Ment Health. 2007:2(2).

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

5

Should Tactile Defensiveness Exclude Should Tactile Defensiveness Exclude a Life-Sustaining Intervention a Life-Sustaining Intervention in in anan Adolescent With Autism? Adolescent With Autism? a a c,e Ian D.PhD, Wolfe, Don Brunnquell, PhD,bSorensen, Rena Sorensen, PhD,d Armand H. Matheny Antommaria, PhDc,e Ian D. Wolfe, RN,PhD, DonRN,Brunnquell, PhD,b Rena PhD,d Armand H. Matheny Antommaria, MD, PhDMD,

abstract abstract

Commentators discuss theof case of an adolescent with trisomy 21, autism, Commentators discuss the case an adolescent with trisomy 21, autism, intellectual disability, defensiveness, obesity, severesevere intellectual disability, tactiletactile defensiveness, severesevere obesity, and and obstructive who develops postoperative respiratory obstructive sleep sleep apneaapnea who develops postoperative respiratory failurefailure after aafter a resulting in endotracheal intubation and mechanical ventilation. herniahernia repairrepair resulting in endotracheal intubation and mechanical ventilation. A tracheostomy is recommended, is hoped to be temporary A tracheostomy is recommended, whichwhich is hoped to be temporary if the if the patient loses weight. The commentators consider the ways in which patient loses weight. The commentators consider the ways in which the the patient’s defensiveness potentially the risk/benefit ratiothe and the patient’s tactiletactile defensiveness potentially altersalters the risk/benefit ratio and potential of prolonged sedation or physical restraint. Theydescribe also describe potential harmsharms of prolonged sedation or physical restraint. They also the specialized caremay thatbenefit may benefit the patient and the possibility of the specialized care that the patient and the possibility of transferring the patient to an institution with subspeciality, multidisciplinary transferring the patient to an institution with subspeciality, multidisciplinary behavioral care.commentators The commentators generally that deciding to proceed behavioral care. The generally agree agree that deciding to proceed with the tracheostomy orcomfort-based with comfort-based is within the discretion of with the tracheostomy or with care iscare within the discretion of the patient’s parents. care should be provided in a nondiscriminatory a the patient’s parents. HealthHealth care should be provided in a nondiscriminatory a Clinical Ethics Department, s Minnesota, Clinical Ethics Department, Children’sChildren’ Minnesota, b b manner. Individuals with disabilities have equitable to manner. Individuals with disabilities shouldshould have equitable accessaccess to Minneapolis, Minnesota; for Bioethics, Minneapolis, Minnesota; Center forCenter Bioethics, UniversityUniversity c c of Minnesota, Minneapolis, Minnesota; Ethicsand Center and Minneapolis, Minnesota; Ethics Center treatment; additional treatment may be necessary to provide fair access to dof Minnesota, treatment; additional treatment may be necessary to provide fair access to d of Developmental and Behavioral and Division ofDivision Developmental and Behavioral PediatricsPediatrics and opportunities. Sometimes, however, an individual’s disability is relevant opportunities. Sometimes, however, an individual’s disability is relevant to theto the theofDivision of Child and Adolescent Psychiatry, the Division Child and Adolescent Psychiatry, CincinnatiCincinnati HospitalCenter, MedicalCincinnati, Center, Cincinnati, Hospitals Medical Ohio; andOhio; and potential benefits and detriments of a treatment. This month’s RoundseChildren’seChildren’ potential benefits and detriments of a treatment. This month’s EthicsEthics Rounds Department of Pediatrics, of Cincinnati Department of Pediatrics, UniversityUniversity of Cincinnati College College considers theof case of an adolescent with trisomy 21, autism, and severe considers the case an adolescent with trisomy 21, autism, and severe of Medicine, Cincinnati, Ohio of Medicine, Cincinnati, Ohio intellectual disability who might benefit a temporary tracheostomy intellectual disability who might benefit from afrom temporary tracheostomy but but and Antommaria conceptualized and designed Drs WolfeDrs andWolfe Antommaria conceptualized and designed whomight also might not tolerate the device. who also not tolerate the device. case, the drafted initial commentary the case,the drafted initialthe commentary analyses,analyses, commentators, and reviewed and the revised the selected selected commentators, and reviewed and revised manuscript; Drs Sorensen and Brunnquell manuscript; Drs Sorensen and Brunnquell conceptualized and designed and commentary drafted commentary conceptualized and designed and drafted and all contributed authors contributed to theofreview of was brought the emergencyanalyses;analyses; and all authors to the review JamesJames was brought to theto emergency thisand article and approved final manuscript as article approved the final the manuscript as department his mother, a single- this department by hisby mother, a singlewritten. written.

THE CASE THE CASE James is a 17-year-old boy with James is a 17-year-old boy with andlegal sole guardian, legal guardian, and sole after after trisomy 21, 3level 3 autism, trisomy 21, level autism, severesevere parentparent DOI: https://doi.org/10.1542/peds.2021-054469 DOI: https://doi.org/10.1542/peds.2021-054469 refusing for 4 He days. He had refusing to eatto foreat 4 days. had intellectual disability, intellectual disability, tactiletactile for publication Nov 30, 2021 AcceptedAccepted for publication Nov 30, 2021 been thriving his educational in his in educational defensiveness, oppositional-defiant been thriving defensiveness, oppositional-defiant Address correspondence to Ian Wolfe, PhD, RN, Clinical Address correspondence to Ian Wolfe, PhD, RN, Clinical program at school at school beforebefore the the disorder, and hyperphagia resulting inprogram disorder, and hyperphagia resulting in Ethics Department, s Minnesota, 2525Ave Chicago Ave Ethics Department, Children’sChildren’ Minnesota, 2525 Chicago S, MSMinneapolis, 17-150, Minneapolis, 55404.ian.wolfe@ E-mail: ian.wolfe@ MN 55404.MN E-mail: coronavirus disease 2019 (COVID-19)S, MS 17-150, disease 2019 (COVID-19) body index mass index of 45 (class coronavirus a bodya mass (BMI) (BMI) of 45 (class childrensmn.org childrensmn.org pandemic. Further revealed pandemic. Further testingtesting revealed 3 severe obesity), of 3 severe obesity), historyhistory of PEDIATRICS (ISSN Numbers: Print, 0031-4005; PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, Online, that his hernia had recurred. that his hernia had recurred. DuringDuring 1098-4275). diaphragmatic diaphragmatic herniahernia repair,repair, and and 1098-4275). his initial evaluation and treatment, CopyrightCopyright evaluation and treatment, 2022 by the American of Pediatrics obstructive sleep apnea and hypopnea.his initial © 2022 by©the American Academy Academy of Pediatrics obstructive sleep apnea and hypopnea. out multiple intravenousFUNDING:FUNDING: pulledpulled out multiple intravenous His tactile defensiveness is sufficientlyJamesJames His tactile defensiveness is sufficiently No external No external funding. funding. cannulas, a bedside attendant that James generally tocannulas, and a and bedside attendant and and severesevere that James generally prefersprefers to OF INTEREST DISCLOSURES: The have authors have CONFLICTCONFLICT OF INTEREST DISCLOSURES: The authors physical restraints were required to indicatedindicated have no conflicts of relevant interest relevant to be naked. His study sleep study alsotohad to physical restraints were required to they havethey no conflicts of interest to be naked. His sleep also had this article to disclose. provide and medications. be stopped hour because fluids fluids and medications. He He this article to disclose. be stopped after 1after hour1 because he he provide underwent laparoscopic did not tolerate the equipment, laparoscopic repairrepair of his of his did not tolerate the equipment, and heand heunderwent To cite: ID, Brunnquell D, Sorensen To cite: Wolfe ID,Wolfe Brunnquell D, Sorensen R, et al. R, et al. andadmitted was admitted will not his wear his continuous positive herniahernia and was to theto the will not wear continuous positive ShouldDefensiveness Tactile Defensiveness Exclude a LifeShould Tactile Exclude a Lifepediatric ICU (PICU) for postoperative pressure mask even pediatric ICU (PICU) for postoperative airwayairway pressure (CPAP)(CPAP) mask even Sustaining Intervention in an Adolescent Sustaining Intervention in an Adolescent With With monitoring given the severity of his after multiple attempts at monitoring given the severity of his after multiple attempts at Pediatrics. 2022;149(3):e2021054469 Autism?.Autism?. Pediatrics. 2022;149(3):e2021054469 desensitization. obstructive sleep apnea. few days desensitization. obstructive sleep apnea. A few Adays

PEDIATRICS 149, number March 2022:e2021054469 PEDIATRICS Volume Volume 149, number 3, March3, 2022:e2021054469

ETHICS ROUNDS ETHICS ROUNDS

Downloaded from http://publications.aap.org/pediatrics/article-pdf/149/3/e2021054469/1266693/peds_2021054469.pdf aded from http://publications.aap.org/pediatrics/article-pdf/149/3/e2021054469/1266693/peds_2021054469.pdf by American of Pediatrics, William Larkin rican AcademyAcademy of Pediatrics, William Larkin on 262022 August 2022 ugust

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

7

after his surgery, a combination of hematemesis, sedation, and airway obstruction led to hypotension and respiratory distress necessitating tracheal intubation. The intensivist is concerned about the ability to safely extubate James and keep him extubated without progressive hypoxia leading to cardiac arrest. The pulmonologist recommends a tracheostomy as the safest alternative. An otolaryngologist had previously evaluated the utility of an intervention for macroglossialoropharyngeal crowding but determined that the main factor contributing to James’ apnea and hypopnea was his BMI. A hypoglossal nerve stimulator was considered, but his BMI would need to be reduced to 80 cannabinoid chemicals found in the cannabis plant, δ-9-tetrahydrocannabinol (THC) and CBD have been the most studied. THC is responsible for euphoria or intoxication through its activation of the cannabinoid type 1 receptors found on neurons and glial cells in various parts of the brain. THC also interacts with the cannabinoid type 2 receptors, which are found mainly in the immune system.30,31 CBD has a low affinity for the endocannabinoid receptors and does not have psychoactive properties. CBD alters neuronal excitability by other means and may have antioxidant and antiinflammatory properties.32

Evidence supports therapeutic effects of CBD for the treatment of adults with spasticity,33 central pain,34 and social anxiety.35 A prospective

double-blinded multicenter study found that CBD reduced convulsive seizure frequency in children with Dravet syndrome.36 Another controlled double-blind trials showed a reduction in frequency of drop seizures in patients with LennoxGastaut syndrome.37

We know less about the potential benefits of CBD use in children with ASD. Families may encounter information about potential benefits from online advocacy groups, such as Mothers Advocating Medical Marijuana for Autism,38 the Autism Support Network,39 and Pediatric Cannabis Therapy,40 whose members share personal stories of marked behavioral improvement in children who are treated with CBD. A preliminary study in Israel showed a decrease in disruptive behaviors and improved anxiety and communication problems in children with ASD.41 A double-blind placebo-controlled crossover trial is ongoing.42

What do we know about the safety and side effects of cannabis exposure in children? Most of the studies that address adverse effects consider chronic, recreational cannabis use, presumably of THC-dominant strains. Regular cannabis use in adolescents is associated with shortterm decreases in working memory, IQ, executive function, sustained attention, and motor coordination, with long-term effects of altered brain development, addiction, poor educational outcomes, diminished life achievements, and increased risks of chronic psychosis disorder.43–45 It is unclear how, or even if, these findings can be applied to the child in our case. A review of CBD usage specifically46 concludes that CBD is well tolerated in humans, although none of the cited studies included children or adolescents. The previously cited study of CBD treatment of refractory seizures in children and young adults with Dravet syndrome revealed adverse

effects that included somnolence, loss of appetite, and diarrhea.36 Cannabis availability is increasing in the United States, with medical marijuana now legal in 33 states and the District of Columbia,47 and recreational marijuana being legal in 10 states and the District of Columbia.48 In Oregon, where this patient lives, recreational use for minors (age 90%. Transplant is the definitive therapy for a child on a Berlin Heart VAD, and a parent’s decision to refuse would almost certainly result in Aidan’s death. In addition, because the Berlin Heart currently has no portable driver, patients in the United States must stay in the hospital. Still, risks and burdens of transplantation include the need for medication compliance every 12 hours for life along with frequent appointments and procedures. Complications after heart transplant include rejection, infection, lymphoma, and coronary artery disease. In particular, if a recipient does not receive medication regularly, the transplanted heart is at risk for rejection, coronary disease, and death. In Aiden’s case, the transplant team previously listed Aiden when it appeared that Aidan’s father and sitter together had the ability to provide a stable medical home supporting regular posttransplant

care. Now that Tim has turned down the offer of a donor heart and ceased to employ the nanny consistently, these foundations for a successful transplant are called into question. Tim did accept mainstream medical technology in consenting to the Berlin Heart; however, his reluctance to immunize the twin reinforces the concern that he may not accept the traditional medicine that will be needed for Aiden’s survival. These are psychosocial risks that can constitute contraindications to relisting. Contraindications like these are not within a child’s control, and it would be unfair for Aidan to lose the chance for a beneficial transplant unless all reasonable efforts had been made to address them. Importantly, then, in addition to objectively assessing risk factors for transplantation, the team must also consider how to minimize these risks while the patient is waiting and after the transplant.

The team must find a way to align with Tim for shared decision-making about the value to Aiden of having the transplant and the ways to support success. We would recommend open conversations with Tim about several concerns:

• Coping and support. To what extent has Tim’s behavior been affected by his grief at the recent loss of the children’s mother as well as the stresses of caring for a chronically ill child? Increased psychological supports for Tim are likely required. Also, if Tim himself seems unlikely to provide a stable, medically adherent home with a second adult available as a support, are there family members or others who could be educated about the decision-making to help Tim in the moment of organ offer as well as with care beyond the hospitalization? • Information and understanding. How well does Tim understand the pros and cons of transplant

4

for Aiden, compared with any conceivable alternatives that he has expressed a desire to explore? Does he understand that hospital discharge is not possible? Exploring Tim’s ideas about immunization is another critical pathway to understanding his views regarding traditional medicine. If a transplant does not appear likely, what would be Tim’s goals of care for Aiden?

These discussions may enhance Tim’s understanding of his son’s prognosis and the role of transplant. They should also aid the team in understanding and supporting him. If the team can find common ground to build on with Tim, along with a second adult to help with Aiden’s care, then relisting may be appropriate.

Responding to Parental Refusal of Recommended Transplant

Competent adults have the right to refuse unwanted medical treatment. Parents can exercise this right on behalf of their minor children, although the right is not unlimited. Shared decision-making between parents and clinicians is always ideal; however, there are times when differing judgments cannot be reconciled. These situations are particularly challenging when parents refuse recommended lifesustaining treatment. In general, life-sustaining treatment can be declined when its burdens outweigh its benefits to the child.11 Clinicians should defer to good faith judgments made by loving, engaged, and well-informed parents when the net benefits of the treatment are ambiguous or uncertain or the risks of harm to the child are not serious, imminent, or clear.12,13 A commonly accepted example of such clear and imminent harm is found when parents refuse a potentially life-saving blood transfusion for a young child on religious grounds; in

MABEL et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/143/1/e20181551/1075753/peds_20181551.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

71

such circumstances, clinicians are generally thought to be ethically justified in seeking court authorization for a medically necessary transfusion. In situations more analogous to heart transplantation, clinicians often defer to parental judgment, although there is debate within the profession. Relevant examples include parental choice of palliative care in lieu of surgeries for hypoplastic left heart syndrome14,15 or bone marrow transplant for severe combined immunodeficiency.16 In each context, the treatment is likely to be lifesaving; however, the procedures are onerous, and the prospect of longterm survival with an acceptable quality of life is uncertain. In the ethics consult for Aiden, comparisons like these should be considered.

The “clear harm” standard is generally consistent with legal standards for state intervention. In Aiden’s case, the local child welfare agency has declined to be involved. State court may remain an option to seek permission for the hospital to perform the transplant surgery and provide related care as well as an order for the state to find a medical home. Before taking this route, however, it would be important to consult the child protection team and assess the possible psychosocial harms to the patient and family as well as the certainty of actually realizing the desired long-term stability and other benefits, even with judicial support.

Promoting Justice for All Patients Seeking Listing

The pool of donor organs is a public resource that must be distributed fairly. The Organ Procurement and Transplant Network has identified 3 general principles to guide organ allocation and listing decisions: maximizing the overall net benefit to organ recipients, promoting justice, and showing respect for persons.10 With respect to listing,

considerations endorsed include psychosocial factors affecting patient adherence and “ethical rules” such as honesty. Although some clinically focused professional guidance is available to local teams seeking to implement this responsibility,17 there is a dearth of both descriptive research and normative analysis regarding the task of balancing benefit and justice considerations. Important work remains to be done at a national level. Meanwhile, we recommend measures that could be taken by the local transplant team to address some fundamental and procedural aspects of justice in Aiden’s case and others.

A fundamental element of fairness is that “like cases” be treated alike: patients who are similarly situated with respect to listing criteria (eg, with a similar likelihood of benefitting from transplant) should have the same chance of being listed irrespective of location. Criteria should be evidence based and not affected by bias or other ethically irrelevant factors.18 To promote consistency on these dimensions from center to center, we would encourage the transplant team to consult broadly with colleagues at other centers on difficult cases like Aiden’s and to seek to build and publish a national professional consensus on challenging common issues. Methodologies used to inform the evolution of professional opinion in the case of hypoplastic left heart syndrome19 could be useful. Public input would be highly desirable.

In addition, we would recommend other measures be established within the local center to improve the fairness and public accountability of listing decisions. Regulations already require that center patient selection criteria be established in writing and made available to the public. If patients are denied a place on the list, they and their families should be informed in writing of the specific reasons supporting that

PEDIATRICS Volume 143, number 1, January 2019 Downloaded from http://publications.aap.org/pediatrics/article-pdf/143/1/e20181551/1075753/peds_20181551.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

72

PEDIATRIC COLLECTIONS

judgment; ideally, the reasons would be ones that the public could accept as relevant, and other procedural measures promoting accountability would be included.20 Teams could also promote fairness by conducting research on the variability of listing decisions from center to center,21 soliciting community involvement in debating contested issues, or establishing monitoring boards to review listing decisions.18 We trust that the ethics service consulted on Aiden’s case includes community members among its ranks.

Dr Lantos Comments

Competent adults often change their mind about what treatments they want or do not want.22 They are allowed to do so and do not forfeit their right to life-sustaining treatment because they once said that they did not want it. Parents have the same right. In this case, the problem arises not simply because the dad changed his mind but because of the circumstances. His shifting preferences were coupled with a lack of commitment to the treatment and follow-up that his child needed. Such nonadherence would likely doom a transplant to failure. Because organs are scarce and because many people die waiting for a heart, transplant centers have an obligation to maximize the likelihood of success. As noted, this father has to show that he can be compliant with a complicated medical regimen, and that he is committed to following that regimen, before his child should be eligible for transplant. The decision, then, about whether to continue life-sustaining treatment turns on a probabilistic assessment of the likelihood that the father is truly committed. Given the hope of successful treatment with a heart transplantation, it makes sense to err on the side of generosity and to continue life support, even if that means that the child will be in an ICU for months. 5

All of the cases in Ethics Rounds are based on real events. Some incorporate elements of a number of different cases in order to better highlight a specific ethical dilemma.

ACKNOWLEDGMENT We thank Paul J. Ford, PhD, for his thoughtful comments on this article.

ABBREVIATION VAD: ventricular assist device REFERENCES 1. Fuhrman BP, Zimmerman JJ, Clark RS, Relvas MS, Thompson AE, Tobias JD. Fuhrman & Zimmerman’s Pediatric Critical Care. Philadelphia, PA: Elsevier; 2017 2. Mascio CE. The use of ventricular assist device support in children: the state of the art. Artif Organs. 2015;39(1):14–20 3. Kopelman LM. Children and bioethics: uses and abuses of the bestinterests standard. J Med Philos. 1997;22(3):213–217 4. Kopelman LM. The best-interests standard as threshold, ideal, and standard of reasonableness. J Med Philos. 1997;22(3):271–289 5. Pope TM. The best interest standard: both guide and limit to medical decision making on behalf of incapacitated patients. J Clin Ethics. 2011;22(2):134–138 6. Thrush PT, Hoffman TM. Pediatric heart transplantation-indications and outcomes in the current era. J Thorac Dis. 2014;6(8):1080–1096 7. Birnbaum BF, Simpson KE, Canter CE. Heart transplantation in

pediatric cardiomyopathies. Expert Rev Cardiovasc Ther. 2013;11(12):1677–1690 8. United Network for Organ Sharing. Transplant trends, waiting list candidates by age for heart. Available at: https://www.unos.org/data/ transplant-trends/#waitlists_by_ age+organ+Heart. Accessed June 14, 2017 9. Freeman RB, Bernat JL. Ethical issues in organ transplantation. Prog Cardiovasc Dis. 2012;55(3):282–289 10. Organ Procurement and Transplantation Network. Ethical principles in the allocation of human organs. 2015. Available at: https://optn. transplant.hrsa.gov/resources/ethics/ ethical-principles-in-the-allocation-ofhuman-organs. Accessed January 26, 2018 11. Weise KL, Okun AL, Carter BS, Christian CW; Committee on Bioethics; Section on Hospice and Palliative Medicine; Committee on Child Abuse and Neglect. Guidance on forgoing life-sustaining medical treatment. Pediatrics. 2017;140(3):e20171905 12. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions. Washington, DC: US Government Publishing Office; 1983 13. Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth. 2004;25(4):243–264 14. Spike JP. The ethics of treatment for hypoplastic left heart syndrome (HLHS). Am J Bioeth. 2017;17(7):65–66 15. Devereaux M, Kon AA. May we take our baby with hypoplastic left heart syndrome home? Am J Bioeth. 2017;17(7):72–74

6

16. Nickels AS, Myers GD, Johnson LM, Joshi A, Sharp RR, Lantos JD. Can parents refuse a potentially lifesaving transplant for severe combined immunodeficiency? Pediatrics. 2016;138(1):e20160892 17. Mehra MR, Canter CE, Hannan MM, et al; International Society for Heart Lung Transplantation (ISHLT) Infectious Diseases Council; International Society for Heart Lung Transplantation (ISHLT) Pediatric Transplantation Council; International Society for Heart Lung Transplantation (ISHLT) Heart Failure and Transplantation Council. The 2016 International Society for Heart Lung Transplantation listing criteria for heart transplantation: a 10-year update. J Heart Lung Transplant. 2016;35(1):1–23 18. Kamin DS, Freiberger D, Daly KP, et al. What is the role of developmental disability in patient selection for pediatric solid organ transplantation? Am J Transplant. 2016;16(3): 767–772 19. Kon AA, Prsa M, Rohlicek CV. Choices doctors would make if their infant had hypoplastic left heart syndrome: comparison of survey data from 1999 and 2007. Pediatr Cardiol. 2013;34(2):348–353 20. Daniels N. Accountability for reasonableness. BMJ. 2000; 321(7272):1300–1301 21. Richards CT, Crawley LM, Magnus D. Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: inconsistencies in standards across major pediatric transplant centers. Pediatr Transplant. 2009;13(7):843–850 22. Auriemma CL, Nguyen CA, Bronheim R, et al. Stability of end-of-life preferences: a systematic review of the evidence. JAMA Intern Med. 2014;174(7):1085–1092

MABEL et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/143/1/e20181551/1075753/peds_20181551.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

73

Child Abuse, Incarceration, Child Abuse, Incarceration, and Decisions About Lifeand Decisions About Lifesustaining Treatment sustaining Treatment

b c,d Mann, MD,aMark ElliottWeiss, Mark MD, Weiss, MD,bMSME, R. Seltzer, a Elliott Paul C. Paul Mann,C. MD, MSME, RebeccaRebecca R. Seltzer, MD,c,d MD, c Renee D. Boss, MD, MHS,c,d John D. Lantos, MDe Rachel A.B. Dodge, MD, MPH, Rachel A.B. Dodge, MD, MPH,c Renee D. Boss, MD, MHS,c,d John D. Lantos, MDe

Most critical care interventions for children the framework abstract Most critical care interventions for children occuroccur in thein framework of a of a abstract supportive environment with loving parents that are present at the bedside supportive environment with loving parents that are present at the bedside toto help to guide medical interventions through shared decision-making. to help guide medical interventions through shared decision-making. What happens, however, if the parents are precluded from What happens, however, if the parents are precluded from beingbeing at theat the bedside because of legal entanglements? How should clinical decisions bedside because of legal entanglements? How should clinical decisions progress in those cases? In this Ethics Rounds, we present the case progress in those cases? In this Ethics Rounds, we present the case of an of an infant with severe hypoxic-ischemic encephalopathy at birth whose mother infant with severe hypoxic-ischemic encephalopathy at birth whose mother aDivision of Neonatology, Department of Pediatrics, Medical aDivision of Neonatology, Department of Pediatrics, Medical was incarcerated shortly after delivery. We explore clinical and legal was incarcerated shortly after delivery. We explore clinical and legal College of Georgia, Augusta University, Augusta, Georgia; College ofb Georgia, Augusta University, Augusta, Georgia; challenges that the medical team faces in determining best interests for the Division of Neonatology, Department of Pediatrics, School bDivision of Neonatology, challenges that the medical team faces in determining best interests for the Department of Pediatrics, School of Medicine, University of Washington and Treuman Katz infant in this context and difficulties in deciding what therapies to provide of Medicine, University of Washington and Treuman Katz infant in this context and difficulties in deciding what therapies to provide Center for Pediatric Bioethics, Seattle Children’s Hospital Center for Pediatric Bioethics, Seattle Children’s Hospital and forlong. how long. and Research Institute, Seattle, Washington; cDepartment and for how and Research Institute, Seattle, Washington; cDepartment d

of Pediatrics, School of Medicine and Johns Hopkins of Pediatrics, School of Medicine and dJohns Hopkins Berman Institute of Bioethics, John Hopkins University, Berman Institute of Bioethics, JohneHopkins University, Baltimore, Maryland; and Center for Bioethics, Department Baltimore, Maryland; and eCenter for Bioethics, Department of Pediatrics, Children’s Mercy Hospital, Kansas City, of Pediatrics, Children’s Mercy Hospital, Kansas City, Missouri Missouri

hypertension. However, the infant Decisions withdrawing However, the infant Decisions about about withdrawing life- life- hypertension. sustaining treatment of infants is independently deemed sustaining treatment of infants with with is independently deemed not tonot to hypoxic-ischemic encephalopathy be a candidate be a candidate for extracorporeal Drs Mann, Drs Mann, Weiss, Seltzer, Dodge, Boss, and Lantos hypoxic-ischemic encephalopathy for extracorporeal Weiss, Seltzer, Dodge, Boss, and Lantos contributed to the design of this manuscript, the are complex. Prognostication can membrane oxygenation by 2 contributed to the design of this manuscript, the are complex. Prognostication can membrane oxygenation by 2 of the manuscript, and the review of the be difficult in infancy. Parents separate quaternary medical centersdraftingdrafting of the manuscript, and the review of the be difficult in infancy. Parents are are separate quaternary medical centers manuscript; and all authors approved the final and all authors approved the final emotionally stressed. Such decisions because because the concern for severe manuscript; emotionally stressed. Such decisions of the of concern for severe manuscript as submitted. manuscript as submitted. become exponentially more difficult hypoxic-ischemic encephalopathy become exponentially more difficult hypoxic-ischemic encephalopathy DOI: https://doi.org/10.1542/peds.2018-0430 DOI: https://doi.org/10.1542/peds.2018-0430 the cause the encephalopathy with potential devastating when when the cause of the of encephalopathy with potential devastating Accepted for publication Feb 14, 2018 may be related to medical neglect neurodevelopmental impacts. Accepted for publication Feb 14, 2018 may be related to medical neglect and andneurodevelopmental impacts. Address correspondence to John D. Lantos, MD, the mother is charged with a crime Address correspondence to John D. Lantos, MD, the mother is charged with a crime Department of Pediatrics, Children’s Mercy and imprisoned. In this article, we Department of Pediatrics, Children’s Mercy As a warrant had previously and imprisoned. In this article, we 2401 Gillham Rd, Kansas City, MO 64108. As a warrant had previously been been Hospital,Hospital, 2401 Gillham Rd, Kansas City, MO 64108. present such a case and analyze the her arrest, the infant’s present such a case and analyze the E-mail: [email protected] issuedissued for herfor arrest, the infant’s E-mail: [email protected] intertwined legalethical and ethical mother is incarcerated after her intertwined legal and issues.issues. mother PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, is incarcerated after her (ISSN Numbers: Print, 0031-4005; Online, hospital discharge. She faces new PEDIATRICS 1098-4275). hospital discharge. She faces new 1098-4275). charges for felony drug possession. Copyright © 2018 by the American Academy of charges for felony drug possession. THE CASE Copyright © 2018 by the American Academy of THE CASE She is also charged with child Pediatrics She is also charged with child Pediatrics endangerment because she had had a An infant is precipitously born at FINANCIAL DISCLOSURE: The authors have endangerment because she had had a An infant is precipitously born at DISCLOSURE: The authors have rupture of membranes days beforeFINANCIAL termaafter a pregnancy complicated rupture indicated they have no financial relationships of membranes 2 days2before term after pregnancy complicated indicated they have no financial relationships relevant to this article to disclose. seeking medical treatment no prenatal care, maternal to disclose. medical treatment and anand an relevant to this article by no by prenatal care, maternal illicit illicit seeking illicit substance in her possession on substance abuse, and meconium FUNDING: No external funding. illicit substance in her possession on substance abuse, and meconium FUNDING: No external funding. the and labordelivery and delivery aspiration syndrome. POTENTIAL CONFLICT OF INTEREST: The authors to theto labor unit. unit.POTENTIAL aspiration syndrome. ApgarApgar scoresscores arrivalarrival CONFLICT OF INTEREST: The authors She hasinformed been informed if the infant were 0/0/2, and the infant have indicated they have no potential conflicts of She has been if the infant were 0/0/2, and the infant has has have indicated they have no potential conflicts of to disclose. dies sheface willadditional, face additional, profound acidosis, hypoxia, to disclose. dies she will more more interestinterest profound acidosis, hypoxia, and and serious charges to the extent that multiorgan system failure after serious charges to the extent that multiorgan system failure after the lawallow will allow the state. delivery. Therapeutic hypothermia the law cite: Mann PC, Weiss EM, Seltzer RR, et al. will in the in state. Child Child To cite:To delivery. Therapeutic hypothermia Mann PC, Weiss EM, Seltzer RR, et al. Child Abuse, Incarceration, and Decisions About Protective Services (CPS) has chosen is initiated, and extracorporeal Child Abuse, Incarceration, and Decisions About Protective Services (CPS) has chosen is initiated, and extracorporeal Life-sustaining Treatment. Pediatrics. 2018;142(6): to sever all parental with the Life-sustaining membrane oxygenation is consideredto sever Treatment. Pediatrics. 2018;142(6): all parental rightsrights with the membrane oxygenation is considered e20180430 exception of medical decision-making.e20180430 because of unremitting pulmonary exception of medical decision-making. because of unremitting pulmonary PEDIATRICS Volume 142, number 6, December 2018:e20180430 PEDIATRICS Volume 142, number 6, December 2018:e20180430

Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/6/e20180430/1075518/peds_20180430.pdf aded from http://publications.aap.org/pediatrics/article-pdf/142/6/e20180430/1075518/peds_20180430.pdf by American Academy of Pediatrics, William Larkin rican Academy Pediatrics, William Larkin on 11 Octoberof 2022 October 2022

74

PEDIATRIC COLLECTIONS

ETHICS ROUNDS ETHICS ROUNDS

She is not being allowed to visit the child and can only be reached by prearranged phone calls, but she repeatedly expresses that all lifesupportive therapies continue with the exception of chest compressions were the infant to require cardiopulmonary resuscitation. The infant’s paternity is in question, and no other family members have attempted to contact the medical team or visit the infant.

The infant is 2 weeks old and remains ventilator dependent with high respiratory support needs, renal dysfunction, and labile vital signs. The infant has regained minimal neurologic function principally limited to basic brainstem reflexes. Neurology consultants have reviewed the progression of results of EEG studies over the past few days and believe that the neurologic outcome will be decidedly poor with no meaningful recovery moving forward. The mother continues to be held in custody, pending the outcome of her infant. Who should make decisions regarding life support for this infant?

PAUL C. MANN, MD, COMMENTS Parents are presumed to be the appropriate surrogate decision makers for their children until doctors suspect and judges agree that they are not acting in the best interest of the child. In this case, the mother’s failure to seek medical care after her rupture of membranes, in concert with her presumed illicit substance abuse and the previous warrant for her arrest, led to an incarceration after delivery. In situations of parental arrest, medical decision-making authority is not automatically terminated, but imprisonment precludes their abilities to be present for medical office visits and/or at the bedside during hospitalization. The medical team can reach the mother by phone, but the state is

preventing any face-to-face meetings. This could contribute to a lack of understanding of her infant’s grim neurodevelopmental and clinical prognosis.

The criminal charges of medical neglect for her behavior during pregnancy are ethically troubling. Many groups, including the Association of Women’s Health, Obstetric and Neonatal Nurses; the American College of Obstetricians and Gynecologists; and the American Academy of Pediatrics (AAP) oppose laws that criminalize maternal behaviors during pregnancy.1 Expectant mothers are typically given wide latitude to make decisions, even when obstetricians and pediatricians disagree with those decisions. Courts rarely intervene in such cases, even when the birth outcome could be jeopardized. Pregnant women have the same rights as other adults to make medical decisions. A courtordered cesarean delivery would be coercive. Doctors who perform one without a court order could be committing battery. So, the first important point in this case is that mothers should not end up in jail as a result of birth outcomes.

In addition, the mother in this case wants what many reasonable parents want in similar circumstances. In cases of severe hypoxic-ischemic encephalopathy at birth, parents frequently require weeks of supportive clinical counseling to cope with the sudden tragedy of an unexpected birth outcome and accept the profound neurodevelopmental impairments that may result. Some parents make the difficult choice to withhold or withdraw life-supportive therapies. Others ultimately pursue more aggressive medical interventions.2 Diekema and Wilfond3 support a compassionate approach to parental decisionmaking in these contexts, allowing for significant latitude in decisions the medical team might not agree with even when neurodevelopmental

2

impairments may be profound. Wilkinson4 suggests a thoughtful assessment of the benefits and burdens of continued medical intervention before considering whether it may be appropriate to withhold or withdraw life-sustaining therapies. In this case, continued mechanical ventilatory support risks a future with profound neurologic impairments and potential suffering lived separate from the loving support of a birth family. This is a future that many reasonable people would consider to be not in the child’s interests.

Such deference to parents is based on the recognition that parents bear the impacts of their choices. But that is not true in this case. The state has (at least temporarily) severed all maternal rights to her infant with the exception of medical decisionmaking. Although she may grieve a life with substantial disability for her child, she will not be responsible for caring for her infant at home in the foreseeable future, if ever.

Her choice to continue life-sustaining treatment of her child, then, could be based on 1 of 3 hopes. She could wish to continue life-sustaining treatment because (1) she hopes and believes that her infant might have a meaningful neurologic recovery, (2) she believes that her infant’s quality of life will be good enough even with profound disability, or (3) she fears the criminal implications for herself if the infant dies. Unfortunately, the medical team is precluded from assessing the mother. With no other surrogate decision makers available to guide therapy, providers are left to weigh the burden of continued medical intervention against the significant possibility of ongoing suffering with uncertain benefit. In the end, taking no legal action to remove maternal medical decision-making will result in a medically complex infant with profound neurologic impairments

MANN et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/6/e20180430/1075518/peds_20180430.pdf by American Academy of Pediatrics, William Larkin on 11 October 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

75

being cared for in the state foster care system.

The medical team has an obligation to advocate for the child. In this case, that means that they should petition the court to appoint a guardian ad litem (GAL) whose task will be to independently consider what is in the child’s best interest and then on the basis of that assessment make recommendations to the court about whether to discontinue lifesupportive interventions.

ELLIOTT M. WEISS, MD, MSME, COMMENTS To start, it may be helpful to have some background on both the criminalization of actions by pregnant women against their fetus and terminology related to parental rights. I will then make 2 recommendations for clinicians confronted by such situations.

A few states criminalize drug use by pregnant women.5 An amendment to the Tennessee fetal assault law made it a crime to give birth to a child with neonatal abstinence syndrome. Alabama’s chemical endangerment laws have been interpreted to include drug use during pregnancy. Proponents of such laws suggest that they deter drug use, punish criminals, and protect fetuses and the children that they will become. Opponents believe that such laws deter women seeking prenatal care. Opponents also point out that the laws are implemented in ways that exacerbate social, economic, and racial disparities. As noted above, most professional medical organizations (including the American Medical Association and the American College of Obstetricians and Gynecologists) are against the criminal prosecution of pregnant women who use illegal drugs.6–8 But some legislators take a different view.9 In the United States, there is a constitutional right to parent one’s children.10 Parental rights include

the right to make medical decisions. Parents are assumed to be in a better position than anybody else to know and decide what is best for their children. But such a prioritization makes sense only if we assume (as is generally the case) that parents have an ongoing relationship with their children. In the current case, that is unlikely. The medical team has been told this mother can have no contact with her infant, presumably forever. Yet she still maintains control of medical decision-making. The law, in this case, is a mess. But it is the law.

So what can the medical team do? First, the medical team should request a CPS appointment of a GAL as soon as possible. This action ought to be seen as much-needed advocacy for the infant. The mother has a clear conflict of interest because of legal ramifications to her that might result from the child’s outcome. This action also reflects a recognition that the medical team may also not be the best advocate for the child. Clinician theorizing about potential (bad) futures for this infant (the unloved and abandoned bedbound child, the taxpayer burden, or the adopted child who ruins a marriage) can risk skewed judgment.

Although a GAL may decrease some decisional burden on the clinicians, he or she does not eliminate it. Difficult decisions must still be made. The medical team must help the GAL by determining what not to offer. This may include ≥3 classes of interventions: acute lifesaving interventions (extracorporeal life support and/or dialysis), treatment of unremitting disease with no potential path forward (inhaled nitric oxide for pulmonary hypertension), and life-extending treatments in the setting of a devastating outcome (surgical feeding tube, ventriculoperitoneal shunt, and/or tracheostomy).

PEDIATRICS Volume 142, number 6, December 2018 Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/6/e20180430/1075518/peds_20180430.pdf by American Academy of Pediatrics, William Larkin on 11 October 2022

76

PEDIATRIC COLLECTIONS

This case should also be brought to the hospital ethics committee. Difficult decisions are better when made jointly. The benefits of decisions by committee include reaching a better decision (potentially) and limiting decisional burden from overwhelming a single individual. A committee could offer a range of opinions about whether the benefits of different treatments outweigh the risks and burdens. In this case, the treating neonatologist, the rest of the medical team, and the infant would all benefit from seeking guidance from others whether through a formal ethics consultation or ethics committee referral or through informal discussion with trusted colleagues.

Individuals in the United States who use illicit substances face massive social, legal, and economic consequences. For pregnant women, the risks are high. As medical providers, we must do our best to support the mother-child dyad within the confines of local law and current societal realities. The GAL can be a tool to assist us. We should not hesitate to use this resource. We must not hesitate to ask for help even when we feel confident that we are making a reasonable choice.

REBECCA R. SELTZER, MD, RACHEL A.B. DODGE, MD, MPH, AND RENEE D. BOSS, MD, MHS, COMMENT We find 3 important questions in the case: (1) Did the mother’s actions constitute child abuse and warrant severing of her parental rights? (2) If so, why are her medical decisionmaking rights retained? (3) How should decision-making proceed to represent this infant’s best interests?

First, the Child Abuse Prevention and Treatment Act mandates reports to CPS when a substance-exposed infant is born.11 There is substantial state by state variability in how this mandate is interpreted and implemented. As of 2018, 24 states and the District 3

of Columbia consider prenatal substance use to be child abuse and allow for its use as grounds for termination of parental rights.12 The termination of parental rights is a civil, not criminal, proceeding. Only 2 states, Alabama and South Carolina, have upheld criminal charges against women related to substance use during pregnancy.13 In this case, prenatal substance use seems to be one of the grounds used as justification to sever parental rights. The second question that arises then is as follows: If a state feels a parent is so unfit that he or she should lose his or her parental rights (even the right to visit his or her infant in the hospital), why should that parent be allowed to make high-stakes medical decisions? This practice has little variability among states. When a state initially determines by clear and convincing evidence that a parent is unfit, it usually terminates physical custody. The child is removed from the parent’s home and placed in an environment that promotes safety and well-being. But parents often retain legal authority to make medical decisions until a decision is made in the judicial process about the termination of all parental rights. That can take months or years. The mother in this case will rarely or never see her infant or interact with clinicians, but she will still direct preference-sensitive decisions such as the use of chronic ventilation or surgical feeding tubes.

The AAP supports this approach and states the process for decisionmaking about life-sustaining medical therapies (LSMTs) for victims of severe child abuse should be similar to that of all other critically ill children.6 This includes treating the parents with respect and compassion and including them in serious medical decisions. Sometimes, this approach leads to questions about whether such parents are making decisions that protect the child.

So we reach our third question: How should decision-making proceed to incorporate the child’s medical status, prognosis, and the family’s values?14 Parents are given authority to direct serious decisions under the assumption that they love their child and will make decisions on the basis of the child’s best interests. A parent’s ability to do this may be compromised by an inadequate understanding of the child’s condition or by conflicting interests.15 Both factors are relevant to this case. Because the mother cannot visit her infant, it seems unlikely that she has a meaningful understanding of her infant’s complex medical status or prognosis. And, because her criminal charges are contingent on whether her infant lives or dies, she has an inherent conflict of interest in making medical decisions that could end the infant’s life. In cases in which LSMT decisions must be made and the parent has a conflict of interest, the AAP recommends that a GAL be appointed as an objective voice and advocate for the child’s best interests. A mediator, such as an ethics consultant, should facilitate communication among the involved parties about this infant’s best interests. If the mother is deemed a competent decision maker, then state laws require her involvement regardless of concerns about her ability to act as a meaningful parent. If the medical team and ethics committee believe that she is acting against her infant’s best interest even after they have taken time to educate her and explore her motivations, they should communicate that to the GAL. The GAL may recommend continued treatment. Or, even without the recommendation, the judge may be reluctant to withdraw LSMTs from a child without parental consent. With this case, we highlight several laws, policies, and practices that

4

do not take the infant’s best interests into account and should be reconsidered.

1. Punitive laws may have actually caused this infant’s poor outcome by deterring prenatal care. Efforts should be focused on encouraging high-quality prenatal care and treatment resources and support for pregnant mothers who use illicit substances rather than instilling fear of legal ramifications.16

2. Despite the inherent conflict of interest, it is standard of care to allow parents to retain medical decision-making rights after charges of harm and/or abuse. If a parent is deemed unfit to have physical custody of a child because of concerns for safety and well-being, then allowing that parent to make medical decisions may be detrimental to the child’s well-being. 3. If decision-making authority is retained, as it was in this case, then preventing the parent from visiting the child’s bedside or openly communicating with the medical team undermines the decision maker’s ability to make an informed decision that represents the child’s best interests. Perhaps there would be no conflict between the mother and team if these barriers were removed. If conflicts still persist, then using a GAL is likely the best option.

CASE RESOLUTION At 3 weeks of life, the infant remained ventilator dependent with no purposeful responses to serial neurologic examinations and worsening renal failure. Repeated attempts were made to communicate the grave nature of the clinical progress to the mother and CPS. Despite these conversations, no additional code limitations were set MANN et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/6/e20180430/1075518/peds_20180430.pdf by American Academy of Pediatrics, William Larkin on 11 October 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

77

in place. After a lengthy discussion with the ethics committee and legal counsel, the institution elected to petition the local court to completely terminate maternal rights and appoint a legal guardian. The courts were in the process of appointing that guardian when the infant had a sudden clinical deterioration. The infant died without receiving cardiopulmonary resuscitation.

JOHN D. LANTOS, MD, COMMENTS

There is a legal maxim that “bad cases create bad law.” This case reveals ways in which bad law can lead to bad cases. Many of the problems in this case were legally iatrogenic. This mother clearly had serious substance abuse problems. Laws criminalizing her behavior likely led her to avoid necessary prenatal care. With better prenatal care, the infant might not have suffered the perinatal insult. Then, the laws made it difficult to include the mother in decisionmaking and created a legal conflict of interest (when there need not have been any) that further undermined her perceived reliability. Such laws have enormous costs and no benefits. They reflect the attitude that substance abuse makes pregnant women less than human. They disparage pregnant women and harm infants. Given this toxic legal environment, the doctors in this case did the best that they could. All of the cases in Ethics Rounds are based on real events. Some incorporate elements of a number of different cases in order to better highlight a specific ethical dilemma.

ABBREVIATIONS AAP: American Academy of Pediatrics CPS: Child Protective Services GAL: guardian ad litem LSMT: life-sustaining medical therapy

REFERENCES

1. Criminalization of pregnant women with substance use disorders. J Obstet Gynecol Neonatal Nurs. 2015;44(1):155–157 2. Wilfond BS. Tracheostomies and assisted ventilation in children with profound disabilities: navigating family and professional values. Pediatrics. 2014;133(suppl 1):S44–S49 3. Diekema DS, Wilfond BS. Decisionmaking for children with disabilities: parental discretion and moral ambiguity. Perspect Biol Med. 2016;58(3):328–331 4. Wilkinson D. Is it in the best interests of an intellectually disabled infant to die? J Med Ethics. 2006;32(8): 454–459

10. Troxel v Granville, 530 US 57, 147 (2000) 11. Child Welfare Information Gateway. Parental Drug Use as Child Abuse. Washington, DC: U.S. Department of Health and Human Services, Children’s Bureau. Available at: https:// www.childwelfare.gov/pubPDFs/ drugexposed.pdf#page=2&view= Prenatal drug exposure. Accessed January 18, 2018 12. Guttmacher Institute. Substance use during pregnancy. 2018. Available at: https://www.guttmacher.org/statepolicy/explore/substance-use-duringpregnancy. Accessed January 19, 2018 13. Angelotta C, Appelbaum PS. Criminal charges for child harm from substance use in pregnancy. J Am Acad Psychiatry Law. 2017;45(2):193–203

6. American Academy of Pediatrics; Committee on Child Abuse and Neglect and Committee on Bioethics. Foregoing life-sustaining medical treatment in abused children. Pediatrics. 2000;106(5):1151–1153

15. Gladsjo JA, Breding J, Sine D, et al. Termination of life support after severe child abuse: the role of a guardian ad litem. Pediatrics. 2004;113(2). Available at: www. pediatrics.org/cgi/content/full/113/2/ e141

7. American Medical Association. Legal interventions during pregnancy. Court-ordered medical treatments and legal penalties for potentially harmful behavior by pregnant women. JAMA. 1990;264(20):2663–2670

PEDIATRICS Volume 142, number 6, December 2018

PEDIATRIC COLLECTIONS

9. Advocates for Pregnant Women. North Carolina Senate Bill 297: educational fact sheet. Available at: http://advocatesforpregnantwomen. org/SB%20297%20-%20Talking%20 Points%20NC%20Fact%20Sheet.pdf. Accessed February 8, 2018

5. Amnesty International. Criminalizing pregnancy: policing pregnant women who use drugs in the USA. 2017. Available at: https://www.amnestyusa. org/reports/criminalizing-pregnancypolicing-pregnant-women-use-drugsusa/. Accessed February 8, 2017

Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/6/e20180430/1075518/peds_20180430.pdf by American Academy of Pediatrics, William Larkin on 11 October 2022

78

8. American College of Obstetricians and Gynecologists Committee on Health Care for Underserved Women. AGOG committee opinion no. 473: substance abuse reporting and pregnancy: the role of the obstetrician-gynecologist. Obstet Gynecol. 2011;117(1):200–201

14. Arias JJ, Weise KL. Pediatric end-of-life decisions when abuse is suspected. Virtual Mentor. 2012;14(10):767–770

16. Patrick SW, Schiff DM; Committee on Substance Use and Prevention. A public health response to opioid use in pregnancy. Pediatrics. 2017;139(3):e20164070

5

Medical Marijuana forfor Minors May Medical Marijuana Minors May Be Be Considered Child Abuse Considered Child Abuse a Jill Glick, b KristinbBilka, MMS, PA-C,b John D.b Lantos, MDc Larissa Hines, MD, LarissaMD, Hines, MD,a Jill Glick, MD, Kristin Bilka, MMS, PA-C, John D. Lantos, MDc

The Food Drug categorizes marijuana (cannabis) as abstract Theand Food andAdministration Drug Administration categorizes marijuana (cannabis) as abstract a Schedule I drug, meaning that it has no currently accepted medical use, a Schedule I drug, meaning that it has no currently accepted medical use, a high apotential for abuse, and noand good safety. Other Other Schedule I high potential for abuse, nodata goodon data on safety. Schedule I drugs drugs are heroin, lysergic acid diethylamide, peyote, methaqualone, and are heroin, lysergic acid diethylamide, peyote, methaqualone, and 3,4-methylenedioxymethamphetamine (“ecstasy”). The authors of some 3,4-methylenedioxymethamphetamine (“ecstasy”). The authors of some studiesstudies have shown that marijuana can reduce nausea and vomiting from from have shown that marijuana can reduce nausea and vomiting chemotherapy, can improve food intake in patients with HIV, reduce chemotherapy, can improve food intake in patients withcan HIV, can reduce neuropathic pain, and may growth of cancer cells. In many neuropathic pain, andslow maythe slow the growth of cancer cells. In states, many states, marijuana use is illegal. No state approved its useits foruse children. What, What, marijuana use is illegal. Nohas state has approved for children. then, should doctors do if they awareaware that parents are using then, should doctors do ifbecome they become that parents are using marijuana to treat conditions in theirinchildren? What ifWhat the children marijuana tomedical treat medical conditions their children? if the children have adverse reactions to the marijuana? In this Ethics Rounds, we present have adverse reactions to the marijuana? In this Ethics Rounds, we present such asuch case aand ask experts in child and child to discuss case and ask experts inprotection child protection andabuse child abuse to discuss the appropriate response. the appropriate response.

In this In Ethics The useThe of marijuana for medical the marijuana? this Rounds, Ethics Rounds, use of marijuana for medical the marijuana? aDepartment of Pediatrics, The University of Utah, Salt Lake Salt Lake aDepartment of Pediatrics, The University of Utah, we present such a case and askand experts purposes raises difficult scientific, bDepartment we present such a case ask experts purposes raises difficult scientific, of Pediatrics, The University of City, Utah; City, of Pediatrics, The University of Utah; bDepartment cDepartment in childinprotection and child legal, and ethical questions. The The of Pediatrics, Chicago, Chicago, and child protection andabuse child to abuse to legal, and ethical questions. of Pediatrics, Chicago,Illinois; Chicago, Illinois; and cDepartment Children’s Mercy Hospital, Kansas City, Missouri Children’s Mercy Hospital, Kansas City, Missouri the appropriate response. authorsauthors of someofstudies have shown the appropriate response. some studies have showndiscussdiscuss that marijuana can reduce nauseanausea and and All authors to the design, and that marijuana can reduce All contributed authors contributed to thedrafting, design, drafting, and vomiting from chemotherapy, can can review ofreview the manuscript and approved the final the final vomiting from chemotherapy, of the manuscript and approved manuscript as submitted. THE CASE improve food intake in patients with withTHE CASE manuscript as submitted. improve food intake in patients HIV, can reduce neuropathic pain, A 4-year-old boy with a curable DOI: https:// org/10. 1542/ 201743102017-4310 HIV, can reduce neuropathic pain, A 4-year-old boy with a curable DOI:doi. https:// doi. org/peds. 10.1542/ peds. and may slow the growth of cancer lymphoma was undergoing AcceptedAccepted for publication Dec 28, 2017 and may slow the growth of cancer lymphoma was undergoing for publication Dec 28, 2017 cells.1 Nevertheless, in many as an outpatient. cells.1 Nevertheless, instates, many states, chemotherapy chemotherapy as an outpatient. Address correspondence to John D. Address correspondence toLantos, John D.MD, Lantos, MD, marijuana use is illegal. No state he washe brought to the to the Department of Pediatrics, Children’s Mercy Mercy marijuana use is illegal. Nohas state hasOne evening, One evening, was brought Department of Pediatrics, Children’s approved its use its foruse children. The The emergency department (ED) for Hospital, Hospital, 2401 Gillham Kansas MO 64108. approved for children. emergency department (ED) for 2401Rd, Gillham Rd,City, Kansas City, MO 64108. Food and Drug (FDA) (FDA)alteredaltered mentalmental status and vomiting E-mail: [email protected] Food andAdministration Drug Administration status and vomiting E-mail: [email protected] categorizes it as a Schedule I drug, I drug, beginning that morning. The mother (ISSN Numbers: Print, 0031-4005; Online, Online, categorizes it as a Schedule beginning that morning. The motherPEDIATRICS PEDIATRICS (ISSN Numbers: Print, 0031-4005; meaning that it has no currently reported that hethat hadhe been 1098-4275). meaning that it has no currently reported hadacting been acting 1098-4275). accepted medical use, a high normalnormal the daythe before. He hadHe finished CopyrightCopyright © 2018 by©the American AcademyAcademy of accepted medical use, potential a high potential day before. had finished 2018 by the American of PediatricsPediatrics for abuse, and no good data on safety. 5 days of oral chemotherapy a few for abuse, and no good data on safety. 5 days of oral chemotherapy a few Other Schedule I drugsI are heroin, The mother reported DISCLOSURE: The authors Other Schedule drugs are heroin, days before. days before. The mother reported FINANCIAL FINANCIAL DISCLOSURE: The have authors have they havethey no financial relationships lysergiclysergic acid diethylamide, marijuana that hethat hadhe received ondansetron have no financial relationships acid diethylamide, marijuana had received ondansetron indicatedindicated relevant to this article disclose. relevant to thistoarticle to disclose. (cannabis), peyote,peyote, methaqualone, and and at home that it wasn’t working. (cannabis), methaqualone, atbut home but that it wasn’t working. No external 3,4-methylenedioxymethamphetamine He continued to vomit the ED. HisED. HisFUNDING:FUNDING: No funding. external funding. 3,4-methylenedioxymethamphetamine He continued to in vomit in the 2 2 (“ecstasy”). Glasgow Coma Score was 11 to 12 with POTENTIAL CONFLICT OF INTEREST: The authors (“ecstasy”). Glasgow Coma Score was 11 to 12 with POTENTIAL CONFLICT OF INTEREST: The authors have indicated they havethey no potential conflicts conflicts of nonsensical speech. He had trouble have indicated have no potential of nonsensical speech. He had trouble interest to disclose. interest to disclose. focusing his eyes and his left pupil What, then, should doctors do if focusing his eyes and his left pupil What, then, should doctors do if larger than right. they become aware aware that parents are arewas notably was notably largerthe than theAright. A they become that parents To cite: To Hines L, Glick al. Medical cite: HinesJ,L,Bilka Glick K,J, et Bilka K, et al. Medical computed tomography scan ofscan his head using marijuana to treattomedical computed tomography of his head using marijuana treat medical Marijuana for Minors May Be Considered Child Child Marijuana for Minors May Be Considered acute intracranial process. An conditions in theirinchildren? What ifWhat ifrevealed revealed acute intracranial process. An conditions their children? Abuse. Pediatrics. 2018;142(4):e20174310 Abuse. Pediatrics. 2018;142(4):e20174310 EEG revealed unremarkable results. the children have adverse reactions to EEG revealed unremarkable results. the children have adverse reactions to PEDIATRICS Volume 142, number October4, 2018:e20174310 PEDIATRICS Volume 142, 4, number October 2018:e20174310

oaded from http://publications.aap.org/pediatrics/article-pdf/142/4/e20174310/1065458/peds_20174310.pdf Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/4/e20174310/1065458/peds_20174310.pdf erican Pediatrics, William Larkin by Academy American of Academy of Pediatrics, William Larkin August 2022 on 26 August 2022

ETHICSETHICS ROUNDS ROUNDS

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

79

The results from his brain MRI were unchanged from those of a previous study from a month before.

His mental status improved throughout the night without specific treatment.

His toxicology screen results were found to be positive for cannabinoids. After being presented with this information, the mother told the doctors that she had purchased marijuana edibles in another state where the sale of marijuana is legal. She had provided the edibles to the patient to help with his pain and nausea. The child abuse team was consulted on whether to report the case to Child Protective Services. The child abuse team asked for an ethics consultation. The question was should we report this as child abuse?

LARISSA HINES, MD, COMMENTS Pediatricians who specialize in the evaluation of child abuse are often asked whether to report a family for suspected child abuse. Ethics consultants can also be helpful in these situations.

Each state has mandatory reporting laws. They vary slightly from state to state. In general, medical professionals are required to report if they have a “reasonable suspicion” or “reason to believe” that abuse has occurred. Each state uses different specific terminology. However, the general principle is the same. To adhere to this mandate, we must first understand what a reasonable suspicion is and what constitutes child abuse.

Many authors have attempted to define and understand reasonable suspicion. Study authors have sought to define reasonable suspicion and determine thresholds for reporting among community professionals, general physicians, and subspecialists. The authors of each of

these studies have found that there is little agreement on what reasonable suspicion means and at what level of certainty a report is indicated.3–5 The authors of 1 study showed that even child abuse experts do not agree on where the threshold for reporting lies.6 Without a specific definition or cutoff for reasonable suspicion, there continues to be variability in reporting practices.7 There are also numerous reasons that physicians may decide not to make a report, even when there is a suspicion for child abuse. These reasons include familiarity with the family, previous negative interactions with Child Protective Services, and resource limitations.8 Child maltreatment is defined as a situation in which acts (or omissions) by a caregiver lead to harm or potential harm to the child. Omissions can lead to charges of child neglect. Note that intent is not a part of these definitions. Many perpetrators of child abuse do not have a specific intent to harm the child. The majority of states have no laws regarding the obligation to report a suspected crime, except in the case of child abuse.

The question raised by this case, then, is whether the mother’s actions rise to the level of harm that would mandate a report to Child Protective Services.

To answer this, we first have to determine if harm or potential harm occurred to the child. This child was seen in the ED and admitted to the hospital because of the change in mental status, which was presumably secondary to the marijuana ingestion. Although the symptoms improved, the giving of marijuana to a child should be considered as harm to the child, in much the same way that bruises or fractures, which go away, are considered to constitute harm. The fact that the child recovered without any apparent sequelae is not relevant to the mandate for reporting.

2

Now we must consider the ethical dilemma rather than just the legal mandate. We can consider both the harm threshold and the best interest standard. When considering the harm threshold, harm was caused to this child, as evidenced by the altered mental status, from which he fully recovered. This mother has done a good job caring for this child who has cancer. However, she gave him a Schedule I narcotic, legally available in some states to purchase but illegal here, as a part of caring for him, which, instead of helping him, caused him harm. However, given her previous good care of the child, prompt response to his side effects, and apparent intentions that she wants to continue to do what is right for the child, it is, in my opinion, in the best interest of this child to have his mother continue to direct his medical care, on the condition that she does not continue to give him tetrahydrocannabinol and cause him more harm, at which point this would not only be considered above the legal threshold for reporting but also no longer in the child’s

HINES et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/4/e20174310/1065458/peds_20174310.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

80

In this case it is important to weigh not only the harm and/or potential for harm to the child from the ingestion but also the harm and/ or potential for harm by reporting to Child Protective Services. This child’s cancer is likely curable. Cancer treatment can be toxic, and the side effects, including nausea and vomiting, can be difficult to manage. These side effects can have significant morbidity. The harm in reporting, then, includes both the potential harm to the child in being denied effective treatment, the psychological harm to the mother in being accused of child abuse, and the burden on an already stretched and underfunded child protection system. There is also a possibility that the child would be removed from his family during an already stressful time, given the cancer diagnosis, which could cause significant psychological harm.

PEDIATRIC COLLECTIONS

best interest. Although intent is not an explicit component of reporting laws, it is ethically relevant. This mother was clearly trying to help her son feel better and not trying to harm him. Although her intent was not to harm, her failure to disclose what she had done initially made this clinically more complicated and potentially risky and/or harmful to the patient. Being forthcoming when using treatments beyond what the medical team recommends or knows about can present a problem due to intended consequences, potential cross reactions, and other unforeseen consequences.

Although there is a legal mandate to report, ethically, it would be appropriate to forego reporting. There is no clear answer in this case, and the decision must be a judgement call by the providers involved in the case. Overall, looking at the total picture and giving the mother the benefit of the doubt, I would not report in this case. Instead, I would counsel the mother about the dangers of using marijuana to treat her son and give her a stern warning that, if this happens again, we would be compelled to report her to child protection.

DR JILL GLICK, MD, AND MS KRISTEN BILKA, PA, COMMENT In the Child Abuse Prevention and Treatment Act,9 child abuse and neglect are defined as, at a minimum, “any recent act or failure to act on the part of a parent or caretaker which results in death, serious physical or emotional harm, sexual abuse or exploitation” or “an act or failure to act which presents an imminent risk of serious harm.” In the Child Abuse Prevention and Treatment Act, a minimal federal standard is defined and then each state is required to develop its own definitions of child abuse and neglect. Note that the legal definition of child abuse does not include intent; however, in the

scenario above and in any question of medical neglect, it must be considered.

As mandated reporters, we are required to call Child Protective Services if we have “reasonable cause to believe” that abuse or neglect has occurred. Reasonable cause to believe means that a person with the same level of education and training would arrive at the same conclusion on the basis of the facts presented. In some clinical scenarios, the threshold to report is well defined. If, for instance, an infant presents with unexplained bruising and brain injury or a child discloses child sexual abuse, one clearly must report. In other cases, such as this one, the threshold for reporting is fuzzy. Our interdisciplinary child advocacy team meets weekly to review all the consultations of the previous week. The most intense discussions arise from cases in which there is ambiguity and disagreement about our obligation to report a family to the child protection authorities. Different child maltreatment categories require a different decision algorithm: in the case of a child with physical injuries, we consider the age of the child, the nature of the injury, the history provided and its plausibility, the ways in which the caretaker recognized and responded to the injury, and any additional clinical findings, such as other occult injuries. When determining our obligation to report, we consciously exclude previous child welfare involvement and avoid speculation about the intent to harm. In cases of medical neglect, by contrast, we must consider whether the provision of questionable medical care or lack thereof resulted in harm or potential harm to the child. We consider parental capacity to understand the need for treatment, any barriers to care, and the resulting harms to the child. In these situations, we do consider the caretaker’s intent.

We are aware of the drastic consequences that may follow a report to child protection. These consequences could affect the patient, the parents, the family, and the doctor. When we get it right, we can halt ongoing maltreatment and ensure a child’s safety. But reporting can also be an adverse event. It can lead to the parent being permanently labeled as a “perpetrator,” regardless of the type of maltreatment. The child may be removed from the home for days or months during the investigation. The physicianfamily relationship may be damaged, strained, or severed. The parents may never trust a physician again. The physician may hope for a specific intervention as a result of reporting, only to find child welfare moving in a different direction. The physician may sense a loss of control of the process after the filing occurs. A substantiated or indicated report can impact the parents’ livelihood if they are teachers, child care providers, or in other professions that require background checks. Given all of this, should we report this mother for giving her child an admittedly illegal substance that apparently caused harm?

Marijuana legalization is a controversial topic. Study authors have shown that the 2 main cannabinoids from marijuana reduce nausea and vomiting from chemotherapy, improve food intake in patients with HIV, reduce neuropathic pain, and may slow the growth of cancer cells.10

Still, marijuana is categorized as a Schedule I drug by the FDA (along with heroin and lysergic acid diethylamide), indicating no medicinal use. Nevertheless, 29 states have legalized medicinal use of this substance. In most of those states, it is only legal for adults. Currently, legal marijuana for medicinal use by children is limited to just a few situations, such as the use of cannabis

PEDIATRICS Volume 142, number 4, October 2018

3

Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/4/e20174310/1065458/peds_20174310.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

81

oil for children with intractable seizures.

The use of marijuana in any context is laden with ethical, legal, political, economic, and even spiritual controversies. But the law is fairly straightforward. The mother’s use of marijuana in this case was illegal. And it seems to have led to harm. The mother knowingly took a risk and crossed over a legal threshold by purchasing marijuana. Each state’s child welfare system has their own definitions of suspected maltreatment, and, regardless of our ethical opinions, we are obligated to attempt to report this to the child’s state welfare system because marijuana is illegal. We don’t know what the response will be. Some state child welfare systems may not take the report. Many states do not accept reports for in utero exposure of infants to marijuana. That said, we ourselves would feel ambivalent about this case. We know that the mother’s intent was to help her child. We can’t help but ask ourselves whether, if we were in this mother’s shoes, we would have done the same thing. We can’t help wondering how we would have felt if the boy had improved after eating marijuana macaroons. What if his anxiety had resolved, his appetite had improved, and he was no longer nauseous? Wouldn’t we feel that we had done the best possible thing for our child?

We would recommend informing the mother that we are legally mandated to report but that our common goal is to improve the health and wellbeing of her child. We would suggest that we work together toward our common goal. This would require close medical follow-up with more attentive efforts to control the side effects of chemotherapy. We would stress to the child protection workers that the mother’s intentions were good.

In summary, when approaching how to define the threshold to report a family to a child welfare system, we must first take into account our state laws. Our medical opinion, however, must be directed by many other factors, including an understanding of the circumstances and the motivation of the parent. Child welfare systems rely on medical providers to make clear statements regarding our medical opinion about whether a child has been abused or neglected. This is a powerful role. We might also use this case to advocate for a change in state laws or policies regarding the well-intentioned use of marijuana in dire circumstances such as the ones that this mother faced.

JOHN D. LANTOS, MD, COMMENTS Some cases beautifully illustrate the difference between legal considerations and ethical ones. It may be legally preferable to report this family to Child Protective Services. It is not ethically preferable. Child protection laws mandate the reporting of suspected child abuse. Nevertheless, in many cases, the provider has some discretion in deciding whether a report to child protection agencies is obligatory. It is both necessary and appropriate for doctors to consider the circumstances of the case in deciding whether to report. As we know, there are many gray zones, much ambiguity, and significant practice variation in reporting practices. We also know that child protection systems are overburdened. This mother needs compassionate care and good medical advice about the dangers of marijuana. She needs to know that she can trust doctors and the health care system and that we are on her side. She needs to know that she made a mistake in giving her child an unmeasured dose of cannabinoids. But she doesn’t need to be accused of a crime and investigated as a criminal.

4

All of the cases in Ethics Rounds are based on real events. Some incorporate elements of a number of different cases in order to better highlight a specific ethical dilemma.

ABBREVIATIONS ED: emergency department FDA: Food and Drug Administration REFERENCES 1. Cassarett D. Stoned: A Doctor’s Case for Medical Marijuana. New York, NY: Penguin Random House; 2015 2. MedShadow. Drug classifications. Available at: https://medshadow. org/resource/drug-classificationsschedule-ii-iii-iv-v/. Accessed December 13, 2017 3. Flaherty EG, Sege R, Binns HJ, Mattson CL, Christoffel KK. Health care providers’ experience reporting child abuse in the primary care setting. Pediatric Practice Research Group. Arch Pediatr Adolesc Med. 2000;154(5):489–493 4. Levi BH, Brown G. Reasonable suspicion: a study of Pennsylvania pediatricians regarding child abuse. Pediatrics. 2005;116(1). Available at: www.pediatrics.org/cgi/content/full/ 116/1/e5

HINES et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/4/e20174310/1065458/peds_20174310.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

82

Doctors who care for children with diseases or symptoms for which cannabinoids might be an effective treatment have a duty to advocate for better studies of the efficacy of these agents in such clinical circumstances. Thus, for children with intractable seizures or with chemotherapyinduced nausea and vomiting, we should have institutional review board–approved protocols in place, and we should seek FDA approval for clinical trials. Children deserve such advocacy, just as they deserve the best medical care that we can provide. Nobody would be served by reporting this family to Child Protective Services.

PEDIATRIC COLLECTIONS

5. Levi BH, Brown G, Erb C. Reasonable suspicion: a pilot study of pediatric residents. Child Abuse Negl. 2006;30(4):345–356 6. Levi BH, Crowell K. Child abuse experts disagree about the threshold for mandated reporting. Clin Pediatr (Phila). 2011;50(4):321–329 7. Levi BH, Portwood SG. Reasonable suspicion of child abuse: finding a

common language. J Law Med Ethics. 2011;39(1):62–69 8. Jones R, Flaherty EG, Binns HJ, et al; Child Abuse Reporting Experience Study Research Group. Clinicians’ description of factors influencing their reporting of suspected child abuse: report of the Child Abuse Reporting Experience Study Research Group. Pediatrics. 2008;122(2):259–266

9. The CAPTA Reauthorization Act of 2010, 42 USC §5106a (2010). Available at: https://www.law.cornell.edu/ uscode/text/42/chapter-67. Accessed November 4, 2017 10. National Institute on Drug Abuse. Marijuana as medicine. Available at: https://www.drugabuse.gov/ publications/drugfacts/marijuanamedicine. Accessed July 15, 2018

PEDIATRICS Volume 142, number 4, October 2018

5

Downloaded from http://publications.aap.org/pediatrics/article-pdf/142/4/e20174310/1065458/peds_20174310.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

83

Parents Refusing Dialysis Parents Refusing Dialysis forfor a a 3-Month-Old With Renal Failure 3-Month-Old With Renal Failure a

b

c

a

a Erin Willig, MS,Paquette, Erin Paquette, JD,b D. MBe, D. Hester, Micah Hester, PhD, Bradley A. Warady, MD, D.John D. Lantos, Laurel Laurel Willig, MD, MS,MD, MD, JD,MD, MBe, Micah PhD,c Bradley A. Warady, MD,a John Lantos, MDd MD

d

A 3-month-old boy with failure to thrive was referred to a nephrology A 3-month-old boy with failure to thrive was referred to a nephrology abstract abstract a diagnostic workup for failure to thrive revealed a serum clinicclinic after after a diagnostic workup for failure to thrive revealed a serum urea nitrogen 95 mg/dL and creatinine 3.6 mg/dL. A renal urea nitrogen level level of 95 of mg/dL and creatinine level level of 3.6ofmg/dL. A renal ultrasound revealed marked bilateral hydronephrosis remaining ultrasound revealed marked bilateral hydronephrosis with with little little remaining cortex in either kidney. A voiding cystourethrogram revealed evidence renalrenal cortex in either kidney. A voiding cystourethrogram revealed evidence of posterior urethral valves. The child had no evident comorbidities. of posterior urethral valves. The child had no evident comorbidities. Fulguration the valves was successfully performed butnot didlead not to lead to Fulguration of theofvalves was successfully performed but did improvement in kidney function. The nephrologists recommended improvement in kidney function. The nephrologists recommended the the initiation of dialysis the hope thatchild the child beto able to receive initiation of dialysis with with the hope that the wouldwould be able receive a kidney transplant in the future. After careful consideration, the family a kidney transplant in the future. After careful consideration, the family stated that did theynot didwant not want this child to suffer a lifetime of dialysis stated that they this child to suffer with with a lifetime of dialysis and transplant also concerned the impact of this and transplant care. care. They They were were also concerned aboutabout the impact of this child’s illness on their 2 children and their family. requested child’s illness on their otherother 2 children and their family. They They requested that their son be provided palliative care only. Experts in nephrology, that their son be provided with with palliative care only. Experts in nephrology, bioethics, and critical care discuss the ethical raised byparental this parental bioethics, and critical care discuss the ethical issuesissues raised by this of Nephrology and dChildren’s Mercy Bioethics aDivisionaDivision of Nephrology and dChildren’s Mercy Bioethics request. Center, Children’s Mercy City, Kansas City, City, Kansas City, Missouri; request. Center, Children’s Mercy Kansas Kansas Missouri; of Care, Critical Ann &H.Robert H. Lurie Children’s bDivisionbDivision of Critical AnnCare, & Robert Lurie Children’s Hospital, Chicago, Illinois; and cDivision of Medical c

Hospital, Chicago, Illinois; and Division of Medical Humanities, University of Arkansas for Medical Humanities, University of Arkansas for Medical Sciences,Sciences, Little Rock, Arkansas Little Rock, Arkansas

the most difficult ethical The Case DrsPaquette, Willig, Paquette, and Lantos One ofOne theofmost difficult ethical The Case Drs Willig, Hester, Hester, Warady,Warady, and Lantos contributed to the of design of this article, the dilemmas in pediatrics today arises contributed to the design this article, the dilemmas in pediatrics today arises A 3-month-old boy with failure to A 3-month-old boy with failure to drafting of the manuscript, and the of review of the when a child has a life-threatening drafting of the manuscript, and the review the when a child has a life-threatening was referred to a nephrology thrivethrive was referred to a nephrology manuscript; all authors approved manuscript; and all and authors approved the finalthe final illness for which a highly successful illness for which a highly successful a diagnostic workup clinic clinic after aafter diagnostic workup for for version.version. treatment is available, but the treatment is available, but the to thrive (weight kg) revealed failurefailure to thrive (weight 3 kg) 3revealed DOI: https:// org/10. 1542/ peds. 2017-2096 DOI: https:// doi.org/doi. 10.1542/ peds. 20172096 treatment is burdensome for parents treatment is burdensome for parents a serum urea nitrogen level 95 mg/ a serum urea nitrogen level of 95 of mg/ Accepted for publication Jun 21, 2017 and families. In cases, such cases, the best and families. In such the best dLcreatinine and creatinine level 3.6 mg/dL. Accepted for publication Jun 21, 2017 dL and level of 3.6of mg/dL. correspondence D. Lantos, interests the patient may seem AddressAddress correspondence to JohntoD.John Lantos, MD, MD, interests of theofpatient may seem The mother’s pregnancy was Children’s Mercy Hospital, 2401 Gillham Rd, Kansas The mother’s pregnancy was to be in conflict with the interests Children’s Mercy Hospital, 2401 Gillham Rd, Kansas to be in conflict with the interests MO E-mail: 64108. [email protected] E-mail: [email protected] unremarkable. A prenatal ultrasoundCity, MOCity, 64108. unremarkable. A prenatal ultrasound of other family members and the of other family members and the was conducted 19 weeks’ PEDIATRICS (ISSN Numbers: Print, 0031-4005; at 19 at weeks’ preferences the parents. Exampleswas conducted PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, Online, preferences of theofparents. Examples 1098-4275). gestation with no reported kidney 1098-4275). gestation with no reported kidney this situation include dialysis of thisofsituation include renal renal dialysis abnormalities. There was no report Copyright Copyright by the American Academy of and transplant, ventilation, © 2018© by2018 the American Academy of and transplant, homehome ventilation, or or abnormalities. There was no report Pediatrics of oligohydramnios. The child’s birthPediatrics of oligohydramnios. The child’s birth complex cancer chemotherapy. How complex cancer chemotherapy. How weight was kg. When questioned,FINaNCIaL FINaNCIaL DIsCLOsURe: The authors weight was 3.2 kg.3.2 When questioned, burdensome a treatment have to DIsCLOsURe: The authors have have burdensome does adoes treatment have to indicated they no financial relationships the parents stated that the child had indicated they have nohave financial relationships the parents stated that the child had be for us to decide that it is ethically be for us to decide that it is ethically relevant to this to article to disclose. never demonstrated a strong urinary relevant to this article disclose. optional? this Ethics Rounds, optional? In thisInEthics Rounds, we we never demonstrated a strong urinary FUNDING: No external stream. FUNDING: No external funding.funding. present case of a 3-month-old present a caseaof a 3-month-old with withstream. POTeNTIaL CONFLICT OF INTeResT: The authors end-stage kidney disease (ESKD). The child The had childno had no evident POTeNTIaL CONFLICT OF INTeResT: The authors end-stage kidney disease (ESKD). evident have indicated they have no potential conflicts of have indicated they have no potential conflicts of The doctors recommend dialysis. comorbidities. comorbidities. A renal ultrasound The doctors recommend dialysis. A renal ultrasound to disclose. interestinterest to disclose. The parents would prefer that their revealed marked bilateral The parents would prefer that their revealed marked bilateral receive palliative care. Expertshydronephrosis hydronephrosis with remaining little remaining infantinfant receive palliative care. Experts with little cite:L,Willig L, Paquette E, Hester To cite:To Willig Paquette E, Hester DM, et DM, al. et al. in pediatric nephrology, bioethics, renal cortex in either kidney. A in pediatric nephrology, bioethics, renal cortex in either kidney. A for a 3-Month-Old ParentsParents RefusingRefusing DialysisDialysis for a 3-Month-Old With With and critical care medicine analyze voiding cystourethrogram revealed and critical care medicine analyze the the voiding cystourethrogram revealed Renal Failure. Pediatrics. 2018;141(3):e20172096 Renal Failure. Pediatrics. 2018;141(3):e20172096 ethical issues. evidence of posterior urethral ethical issues. evidence of posterior urethral valvesvalves PEDIATRICS 141, number 3, 2018:e20172096 March 2018:e20172096 PEDIATRICS VolumeVolume 141, number 3, March

Downloaded from http://publications.aap.org/pediatrics/article-pdf/141/3/e20172096/917418/peds_20172096.pdf oaded from http://publications.aap.org/pediatrics/article-pdf/141/3/e20172096/917418/peds_20172096.pdf by American of Pediatrics, William Larkin erican AcademyAcademy of Pediatrics, William Larkin on 262022 August 2022 August

84

PEDIATRIC COLLECTIONS

Ethics Rounds Ethics Rounds

(PUV). Fulguration of the valves was successfully performed but did not lead to improvement in kidney function.

At a family meeting with the child’s parents and maternal grandparents, the nephrologists recommended the initiation of dialysis with the hope that the child would be able to receive a kidney transplant in the future. The nephrologists offered to put the family in contact with other families who had children on dialysis. The family requested several days to discuss the situation. They returned 2 days later and stated that they did not want this child to suffer with a lifetime of dialysis and transplant care. They were also concerned about the impact of this child’s illness on their other 2 children and their family. They requested that their son be provided with palliative care only. What ethical issues should the nephrologists consider in response to this parental request?

LaUReL WILLIG, MD, Ms, aND BRaDLey WaRaDy, MD, COMMeNT PUVs occur in ∼1 in 5000 live births.1 Fetal interventions have no definitive impact on long-term kidney function and 20% to 30% of children with PUV progress to ESKD.2,3 In the case presented, the nephrology team has recommended the initiation of renal replacement therapy (RRT), starting with chronic peritoneal dialysis (CPD) and followed by kidney transplant at a later date. They convened a family meeting to help the parents make an informed decision about RRT or palliative care.

At such a meeting, doctors would have discussed both the anticipated medical outcomes as well as the psychosocial issues associated with home peritoneal dialysis (PD). After discussing this information among themselves, the family expressed their desire for palliation for 2 primary reasons: their child’s suffering and their concern for the

toll PD will take on the rest of their family.

What medical management issues might have been brought up by the dialysis team that prompted the family’s decision not to pursue RRT? It is possible that the parents are most concerned about the fact that infants who receive CPD require frequent hospitalizations and medical visits. Infants on CPD have high rates of peritonitis, growth retardation, and suboptimal nutritional status, in part because of oral aversion.4 At the same time, they should have been informed that peritonitis rates have fallen and that the combination of growth hormone therapy and supplemental tube feeding is associated with accelerated height and weight gain in infants on CPD. Whereas infants with ESKD may also experience neurocognitive dysfunction, the frequency and severity of this complication has also decreased over time.5,6 Finally, the mortality rate for patients who initiate PD at 87% at 5 years.24 Without dialysis and transplant, he will die. We know that his 1 substantial problem is his kidneys, and their function can be mimicked through the technology of dialysis, leading (hopefully) to a later transplant. With dialysis and eventual transplant, this child could have normal cognitive and physiologic development. The parents in this case indicate that they believe the child will “suffer with a lifetime of dialysis and transplant care.” Further, they note that their family (including 2 other children) would be unduly burdened by the care of their newest child. These implications of

3

treatment are serious and need to be seriously considered. However, we do not know whether the burdens of treatment will harm the family, and even if we did, burdensome is not equivalent to unreasonable, unwarranted, or even unnecessary.

There is strong reason to believe that a good life is possible, and, as such, the harm of allowing this child to die without attempting beneficial interventions would be a grave harm. The intervention is necessary to prevent that harm. Given that a good life is possible with treatment, and that death is inevitable without it, I would recommend intervening to get the state involved.

Now, note that this seems to speak only to state involvement, not whether to do dialysis. This is because, in most jurisdictions for most kinds of cases, physicians are not authorized simply to do what they wish when they disagree with the parents. The state retains that authority through the doctrine of parens patriae. But frankly, the moral implication that follows from health care providers involving the state in cases like these is that doctors view the parental position as unacceptable. The doctors should try to convince the judge that, in this case, dialysis is ethically obligatory.

eRIN PaqUeTTe, MD, JD, MBe, COMMeNTs In response to this parental request for palliative care only, the nephrologists should consider how ethical decisions are generally made for pediatric patients, whether that standard has been met in this particular case, and whether all potential options have been provided to this family in a way that best helps them to make this decision. For pediatric patients, medical decisions are generally based on the best interests principle. When deciding what is in a particular child’s best interests,

the decision-maker should weigh the benefits and burdens of each potential course of action. Traditionally, we work with parents to make this judgment and guide them with our medical knowledge. Parents are generally best situated to determine what is in the best interests of their particular child in the context of their family. We respect parents’ decisions as long as their choices fall within a range of ethically acceptable options.

While parents provide informed permission or refusal, rather than consent, on behalf of their children, they must be able to meet the core elements of consent in making their decision. Informed consent requires that the decision-maker has capacity, has received adequate information, and makes a voluntary choice. The nephrologists should determine, first, whether the parents in this case have the capacity to make a decision regarding their child. To demonstrate capacity, the parents must be able to understand the relevant information presented to them, the consequences of various courses of action, and the ability to manipulate information rationally. To address this, the nephrologists should assess what the parents understood at the time the refusal was made. In particular, the team should ensure that the family understands their child will not survive long-term without dialysis, as well as what the expectations for their child are if they were to pursue either a palliative course alone or dialysis. Importantly, they should also explain that the choice of dialysis and palliative care is not an either/or choice. Their child could receive dialysis and palliative care simultaneously should they choose to pursue dialysis. This might address their concerns about suffering and ensure continued assessment of their goals of care. The team has appropriately offered the parents an opportunity to meet with other families whose children

4

have required dialysis to learn more about the potential impact on their child and family. It is unclear whether the parents elected to contact other families before returning to the team with their decision to forego dialysis. At that time, they expressed concerns over their son’s suffering, as well as over the impact dialysis and transplant may have on their family and other children. It is important for the nephrologists to explore the parents’ reasoning further to assess their perception of suffering and to correct any misconceptions. Once the team has determined that the parents have the capacity to decide and has addressed gaps in understanding, the team should next consider the ways in which the family is balancing the interests of the sick child with the interests of other family members. The parents’ choice may be influenced not only by the child’s circumstances but also by the circumstances of others within the family. The nephrologists should therefore consider whether and how the family considers the needs of their other children in making a decision for this child. It is reasonable and important for families to consider the broader impacts of the medical decisions they make for their children to reasonably determine if a particular course of action is the correct choice for their family. Although the best interests standard sets up a paradigm to consider 1 child’s interests in isolation, in reality, the interests of any child intersect in unavoidable ways with the interests of other family members.22 Parents are best positioned to weigh these interests against each other. However, if the family’s choice to limit the option of dialysis for their child is motivated mainly by concern for their other children, the medical team may question whether family circumstances constrain their ability to care for a child receiving dialysis so greatly that they feel

WILLIG et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/141/3/e20172096/917418/peds_20172096.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

87

there is no other option except to forego dialysis. In this circumstance, the voluntariness of the parents’ decision may be questioned, and the team should determine if there are resources that might aid the family to alleviate this stressor. If the parents are choosing to forego dialysis primarily because it is in the interests of other family members to do so, this would not be ethically acceptable. In this situation, the team might explore whether the family has considered adoption or other placement for the child. Palliative care alone is generally not accepted as an option in situations in which treatment offers a reasonable likelihood of 5-year survival.23 But there are aspects of dialysis, particularly when initiated during infancy, that may modify this judgment. A lifetime of either dialysis or ongoing posttransplant care is associated with significant financial costs, high burdens for the family, and potentially life-limiting medical complications.24 Reasonable parents, considering all these factors, may elect not to pursue these treatments.

Ultimately, the team must consider whether the family meets their obligation to decide in their child’s best interests. The team may assert that many children with PUVs and intact pulmonary status survive and thrive into adulthood, although poor renal function at presentation, even in the absence of pulmonary disease, is associated with an increased risk of progression to ESKD.25 To challenge the parents’ decision in this case on the basis of optimism about long-term survival, the team would need to assert that a decision to forego dialysis and opt for only palliative care constitutes medical neglect. When considering refusals of recommended treatment of treatable diseases with favorable prognoses, both clinicians and courts may be inclined to override parental authority and enforce treatment.26,27 But courts are not consistent. They

have ruled differently on parental authority to refuse, even in good prognosis situations.25

Before pursuing a claim of medical neglect on the basis of the parents’ refusal, the team should question whether the parents’ decision infringes unacceptably on the patient’s interests (addressed above) and whether palliative care only is a reasonable option for this child. When motivated not primarily by meeting the interests of other children, but out of true concern about the potential suffering of this child, I believe that it is a reasonable option. If the family continues to prefer palliative care only after the team discusses the possibility of a trial of dialysis, with opportunities to consider discontinuation if complications occur, and the possibility of dialysis with simultaneous palliative care involvement, then the team should honor their decision.

JOhN D. LaNTOs, MD, COMMeNTs Two features of this case make it particularly thorny. The first is the role of the patient’s age in shaping the decision about whether to permit a decision to forego dialysis. Nephrologists are more likely to permit such a decision for infants than for older children.28 This is not necessarily age-based discrimination against infants. In many cases, infants with ESKD have associated anomalies that make the prognosis worse.29 And dialysis is technically more complicated in infants than in older children.30 But in this case, the patient did not have associated anomalies. Thus, his prognosis for survival and an eventual kidney transplant was excellent.31 Such treatment would seem to be clearly in the child’s best interest. That leads to the second complex feature of this case. The parents’ decision was clearly based on their consideration of the interests of the

PEDIATRICS Volume 141, number 3, March 2018 Downloaded from http://publications.aap.org/pediatrics/article-pdf/141/3/e20172096/917418/peds_20172096.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

88

PEDIATRIC COLLECTIONS

family as well as the interests of the patient. They were concerned, apparently, that the treatment of this child would have a negative impact on their family. Groll32 analyzed such claims and concluded that “sacrifices can sometimes be demanded of some family members for the sake of others.” He suggests that the interests of other family members should be “taken into account” in making treatment decisions for a sick child.

Family interests should clearly be taken into account. Infants and children need families to grow and thrive. But when the interests of the family lead to the withholding of a life-saving treatment of a child who might otherwise grow and thrive, the balancing of interests should tilt in favor of the child. The best solution might be to seek medical foster care33 to provide the medically indicated treatment while still respecting family interests.34 All of the cases in Ethics Rounds are based on real events. Some incorporate elements of a number of different cases in order to better highlighta specific ethical dilemma.

aBBRevIaTIONs CPD: chronic peritoneal dialysis ESKD: end-stage kidney disease PD: peritoneal dialysis PUV: posterior urethral valves RRT: renal replacement therapy ReFeReNCes 1. Casella DP, Tomaszewski JJ, Ost MC. Posterior urethral valves: renal failure and prenatal treatment. Int J Nephrol. 2012;2012:351067 2. Morris RK, Malin GL, Khan KS, Kilby MD. Systematic review of the effectiveness of antenatal intervention for the treatment of congenital lower urinary tract obstruction. BJOG. 2010;117(4):382–390

5

3. Pulido JE, Furth SL, Zderic SA, Canning DA, Tasian GE. Renal parenchymal area and risk of ESRD in boys with posterior urethral valves. Clin J Am Soc Nephrol. 2014;9(3):499–505 4. Vidal E, Edefonti A, Murer L, et al; Italian Registry of Paediatric Chronic Dialysis. Peritoneal dialysis in infants: the experience of the Italian Registry of Paediatric Chronic Dialysis. Nephrol Dial Transplant. 2012;27(1):388–395 5. Johnson RJ, Warady BA. Long-term neurocognitive outcomes of patients with end-stage renal disease during infancy. Pediatr Nephrol. 2013;28(8):1283–1291 6. McGraw ME, Haka-Ikse K. Neurologicdevelopmental sequelae of chronic renal failure in infancy. J Pediatr. 1985;106(4):579–583 7. Laakkonen H, Taskinen S, Rönnholm K, Holmberg C, Sandberg S. Parentchild and spousal relationships in families with a young child with endstage renal disease. Pediatr Nephrol. 2014;29(2):289–295 8. Tsai TC, Liu SI, Tsai JD, Chou LH. Psychosocial effects on caregivers for children on chronic peritoneal dialysis. Kidney Int. 2006;70(11):1983–1987 9. Tong A, Wong G, McTaggart S, et al. Quality of life of young adults and adolescents with chronic kidney disease. J Pediatr. 2013;163(4):1179– 1185.e5 10. Alderfer MA, Long KA, Lown EA, et al. Psychosocial adjustment of siblings of children with cancer: a systematic review. Psychooncology. 2010;19(8):789–805 11. Carey WA, Martz KL, Warady BA. Outcome of patients initiating chronic peritoneal dialysis during the first year of life. Pediatrics. 2015;136(3). Available at: www.pediatrics.org/cgi/ content/full/136/3/e615 12. Rees L. The dilemmas surrounding the decision to start chronic dialysis in the neonate. Kidney Int. 2014;86(1):18–20 13. Teh JC, Frieling ML, Sienna JL, Geary DF. Attitudes of caregivers to management of end-stage renal disease in infants. Perit Dial Int. 2011;31(4):459–465

14. Nelson HL, Nelson JL. The Patient in the Family: an Ethics of Medicine and Families. New York, NY: Routledge; 1995 15. President’s Commission for the Study of Ethical Problems in Medicine. Making health care decisions: the ethical and legal implications of informed consent in the patientpractitioner relationship. 1982. Available at: https://repository.library. georgetown.edu/bitstream/handle/ 10822/559354/making_health_care_ decisions.pdf 16. Carbone J. Legal applications of the “best interest of the child” standard: judicial rationalization or a measure of institutional competence? Pediatrics. 2014;134(suppl 2):S111–S120 17. Buchanan A, Brock D. Deciding for Others: the Ethics of Surrogate Decision Making. Oxford, United Kingdom: Oxford University Press; 1989 18. Winnicott DW. Transitional objects and transitional phenomena; a study of the first not-me possession. Int J Psychoanal. 1953;34(2):89–97 19. Kopelman L. Using the best-interests standard in treatment decisions for young children. In: Miller G, ed. Pediatric Bioethics. Cambridge, United Kingdom: Cambridge University Press; 2010:22–37 20. Hester DM. Interests and neonates: there is more to the story than we explicitly acknowledge. Theor Med Bioeth. 2007;28(5):357–372 21. Kopelman LM. The best interests standard for incompetent or incapacitated persons of all ages. J Law Med Ethics. 2007;35(1):187–196 22. Ross LF. Children, Families, and Health Care Decision Making. Oxford, United Kingdom: Oxford University Press; 1998 23. Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth. 2004;25(4):243–264 24. Post-Transplant UNOS. Kidney KaplanMeier survival rates for transplants performed: 2008–2015. Available at: https://optn.transplant.hrsa.gov/data/ view-data-reports/national-data/#. Accessed April 18, 2017

6

25. Chan JC, Williams DM, Roth KS. Kidney failure in infants and children. Pediatr Rev. 2002;23(2):47–60 26. Talati ED, Lang CW, Ross LF. Reactions of pediatricians to refusals of medical treatment for minors. J Adolesc Health. 2010;47(2):126–132 27. Hord JD, Rehman W, Hannon P, Anderson-Shaw L, Schmidt ML. Do parents have the right to refuse standard treatment for their child with favorable-prognosis cancer? Ethical and legal concerns. J Clin Oncol. 2006;24(34):5454–5456 28. Lantos JD, Warady BA. The evolving ethics of infant dialysis. Pediatr Nephrol. 2013;28(10):1943–1947 29. Neu AM, Sander A, Borzych-Duzalka D, et al; IPPN Investigators. Comorbidities in chronic pediatric peritoneal dialysis patients: a report of the International Pediatric Peritoneal Dialysis Network. Perit Dial Int. 2012;32(4):410–418 30. Abrahão SS, Ricas J, Andrade DF, et al. Difficulties experienced by children/ adolescents with chronic kidney disease and by their families [in English and Portuguese]. J Bras Nefrol. 2010;32(1):16–20 31. Carey WA, Talley LI, Sehring SA, Jaskula JM, Mathias RS. Outcomes of dialysis initiated during the neonatal period for treatment of end-stage renal disease: a North American Pediatric Renal Trials and Collaborative Studies special analysis. Pediatrics. 2007;119(2). Available at: www.pediatrics.org/cgi/ content/full/119/2/e468 32. Groll D. Four models of family interests. Pediatrics. 2014;134(suppl 2):S81–S86 33. The Children’s Aid Society. Medical foster care program & history. Available at: www.childrensaidsocie ty.org/adoption-foster-care/medicalfoster-care-program-history. Accessed June 15, 2017 34. Robert Wood Johnson Foundation. For foster child with kidney disease, a very happy ending. 2011. Available at: www. rwjf.org/en/library/articles-and-news/ 2011/05/for-foster-child-with-kidneydisease-a-very-happy-ending.html. Accessed June 15, 2017

WILLIG et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/141/3/e20172096/917418/peds_20172096.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

89

ETHICS ROUNDS ROUNDS AnETHICS 8-Year-Old Foster Child With Behavioral Problems An Needs 8-Year-Old Foster Child Transplant With Behavioral Problems Who a Bone Marrow Who Needs a Bone Marrow Transplant AUTHORS: Maureen Kelley, PhD,a Yoram Unguru, MD, MS, Patients who undergo bone marrow transplant (BMT) must adhere to b MA, G. Douglas Myers, MD,c and John D. Lantos, MDd a complex follow-up regimen. Nonadherence may lead to graft failure and a AUTHORS: MaureenUniversity Kelley, PhD, Yoram Unguru, MD, MS, Patients who undergo bone marrow transplant must adhere to aDepartment of Pediatrics, of Washington School of death. Serious psychological disorders that interfere(BMT) with the recovery b c d MA, G. Douglas Myers, MD, and D. Lantos, Medicine, Treuman Katz Center for PediatricJohn Bioethics, SeattleMD a complex follow-up regimen. Nonadherence may lead to graft failure and process may be a contraindication to BMT. This issue’s “Ethics Rounds” bDivision of Pediatric Children’ s Hospital, ofSeattle, Washington; aDepartment University of Washington School of death. Serious disordersissues that interfere withdisqualify the recovery Hematology/Oncology, Pediatrics, raises issues aboutpsychological whether psychosocial should ever Herman & Walter Children’sSeattle Medicine, Treuman Katz Center for Samuelson Pediatric Bioethics, process may be a contraindication to BMT. This issue’ s “Ethics Rounds” Hospital at Sinai, Johns Hopkins Institute of Bioethics, bDivision a child from receiving a transplant. Respondents are Maureen Kelley, of Pediatric Children’ s Hospital, Seattle, Berman Washington; of Hematology-Oncology, Children’ s s Maryland; cDivision issues about psychosocial issues should ever disqualify Baltimore, Hematology/Oncology, Herman & Walter Samuelson Children’ PhD,raises a philosopher andwhether bioethicist at the University of Washington MercyHospital Hospital,atDepartment Pediatrics, University of Missouri– Sinai, Johnsof Hopkins Berman Institute of Bioethics, a child from receiving a transplant. Respondents are Maureen Kelley, School of Medicine and Seattle Children’s Hospital; Yoram Unguru, MD, Kansas City School of Medicine, Kansas City, Missouri; and Children’s cDivision of Hematology-Oncology, Baltimore, Maryland; philosopher and bioethicist at theand University of Washington dDepartment of Pediatrics, University of Missouri, Kansas City, MS, PhD, MA, aa pediatric hematologist/oncologist bioethicist at the Mercy Hospital, Department of Pediatrics, University of Missouri– s Mercy Children’ s Mercy Hospital, and School Medicine and Seattle Children’ s Hospital; Yoram Kansas City Bioethics School ofCenter, Medicine, Kansas City, Missouri; Herman & of Walter Samuelson Children’ s Hospital at Sinai andUnguru, Johns MD, Children’ City, Missouri of Pediatrics, University of Missouri, Kansas City, MS, MA, a pediatric and bioethicist at the KansasdDepartment Hopkins Berman Institutehematologist/oncologist of Bioethics; and G. Douglas Myers, MD, Children’s Mercy Bioethics Center, Children’s Mercy Hospital, KEY WORDS Herman & Walter Children’ s Hospital at at Sinai and Johns a hematopoietic stem Samuelson cell transplant (HSCT) physician Children’ s ethics,Kansas foster City, care,Missouri leukemia, transplant Hopkins Berman Institute of Bioethics; and G. Douglas Myers, MD, Mercy Hospital. KEY WORDS www.pediatrics.org/cgi/doi/10.1542/peds.2011-3363 a hematopoietic stem cell transplant (HSCT) physician at Children’s ethics, foster care, leukemia, transplant doi:10.1542/peds.2011-3363 Mercy Hospital. www.pediatrics.org/cgi/doi/10.1542/peds.2011-3363 PART I Accepted for publication May 23, 2012

doi:10.1542/peds.2011-3363 CasePART Presentation Address correspondence to John D. Lantos, MD, Children’s Mercy I Accepted for publication MayCity, 23, 2012 Hospital, 2401 Gillham Rd, Kansas MO 64105. E-mail: B.K. is an 8-year-old boy with relapsed acute myelogenous leukemia [email protected] Case Presentation Address correspondence to John D. Lantos, MD, Children’s Mercy (AML) and multiple social and psychiatric problems. B.K. has been Hospital, 2401 Gillham Print, Rd, Kansas City, MO 64105. E-mail: PEDIATRICS (ISSN Numbers: 0031-4005; Online, 1098-4275). B.K. ofis the an state 8-year-old with of relapsed acute a ward sinceboy 3 years age when his myelogenous single motherleukemia lost [email protected] Copyright © 2012 by the American Academy of Pediatrics (AML)rights and multiple social and psychiatric problems. B.K. has parental due to substance abuse. The father is not known. B.K.been PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). FINANCIAL DISCLOSURE: The authors have indicated they have a ward of the state since 3 years of age when his single mother has been in and out of 3 foster homes, including a medical group home lost no financial Copyright © 2012 by relevant the American Pediatrics relationships to thisAcademy article toof disclose. parental rights due toofsubstance abuse. TheHe father not known. during his first treatment AML at age 5 years. was is diagnosed by B.K. FUNDING: FINANCIAL DISCLOSURE: No external funding. The authors have indicated they have has been inasand out ofattachment 3 foster homes, including a psychiatrist having disorder. He isa medical currentlygroup in thehome no financial relationships relevant to this article to disclose. during his first treatment of AML at age 5 years. He was diagnosed inpatient psychiatry unit given behavioral difficulties exhibited when on by FUNDING: No external funding. a psychiatrist having attachment disorder. Hefits. is currently in the the oncology ward,as including aggression and temper B.K. is very inpatient unitdirect givenquestions behavioralabout difficulties exhibited intelligent andpsychiatry often asks his illness. He when has on the oncology including aggression andwho temper fits. B.K. is very become very closeward, to 1 of the psychiatry nurses, has considered intelligent and medical often asks direct offering temporary foster carequestions for B.K. about his illness. He has become very close to 1 of the psychiatry nurses, who has considered He has no relatives other than his mother. A court-appointed guardian offering temporary medical foster care for B.K. ad litem and a state case worker are charged with making medical He hasonno otherreport than that his mother. guardian decisions hisrelatives behalf. They there isAnocourt-appointed immediate prospect ad litem and a state case worker are charged with making medical for foster placement for B.K. given his medical and behavioral issues. decisions on his behalf. They report that there is no immediate prospect The recommended treatment is a related matched-donor BMT. With his for foster placement for B.K. given his medical and behavioral issues. subtype (nucleophosmin 1 mutation), he would have a $60% 5-year The recommended a related matched-donor BMT. With his survival probability. Histreatment predictedis 5-year survival with an unrelated subtype (nucleophosmin 1 mutation),donor he would a $60% 5-year human leukocyte antigen (HLA)-matched is 30%have to 50%. Without survival probability. His predicted 5-year survival with an unrelated a transplant, he will die. A donor who is a near match has been human leukocyte antigen (HLA)-matched donor is 30% to 50%. Without identified. a transplant, he will die. A donor who is a near match has been The oncologist wonders whether a BMT for a child with little social identified. support would be “adding insult to injury” and subjecting the child to The oncologist wonders whether a BMT for a child with little social support would be “adding insult to injury” and subjecting the child to 936

KELLEY et al

936 KELLEY et al Downloaded from http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf by American Academy of Pediatrics, William Larkin PEDIATRIC COLLECTIONS on 26 August90 2022 Downloaded from http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf by American Academy of Pediatrics, William Larkin

SPECIAL ARTICLE–ETHICS ROUNDS SPECIAL ARTICLE–ETHICS ROUNDS

more suffering andand uncertain ultimate more suffering uncertain ultimate benefit. He He alsoalso feels it would be be un-unbenefit. feels it would ethical to put B.K.B.K. through a second ethical to put through a second round of of induction chemotherapy if if round induction chemotherapy there is no hope of him undergoing the the there is no hope of him undergoing transplant. TheThe oncologist callscalls for for an an transplant. oncologist ethics consultation, asking whether it isit is ethics consultation, asking whether appropriate to consider the the patient’ s soappropriate to consider patient’ s socialcial situation in weighing the the risks andand situation in weighing risks benefits of transplant. benefits of transplant. Maureen Kelley Maureen Kelley Although thethe medical andand social facts of of Although medical social facts thisthis casecase areare complicated, thethe answer complicated, answer to to thethe central ethical question posed central ethical question posed herehere seems clear. B.K.B.K. deserves thethe same seems clear. deserves same chance for survival thatthat anyany child withwith thisthis chance for survival child prognosiswould be offered, regardless of of prognosiswould be offered, regardless his his tragic social situation. I would go even tragic social situation. I would go even further: because of his particularly vul-vulfurther: because of his particularly nerable social position, those involved in in nerable social position, those involved his his carecare have a greater obligation to to have a greater obligation advocate for for his his interests thanthan theythey advocate interests might if B.K. had parents to advocate on on might if B.K. had parents to advocate his his behalf. behalf. B.K.’B.K.’ s clinical prognosis seems suffis clinical prognosis seems sufficiently good that, butbut for for his his social ciently good that, social situation, it isit hard to to imagine anyany situation, is hard imagine physician physicianrecommending recommendingagainst againsta a transplant, particularly withwith a matched transplant, particularly a matched donor. Few,Few, I would guess, would even donor. I would guess, would even permit his his parents to refuse, if he hadhad permit parents to refuse, if he parents to make decisions. If, sadly, his his parents to make decisions. If, sadly, prognosis were to significantly worsen prognosis were to significantly worsen (eg,(eg, if heif were to suffer another relapse he were to suffer another relapse or or thethe severe adverse effects of graftsevere adverse effects of graftversus-host disease [GVHD]), discussing versus-host disease [GVHD]), discussing a shift to palliative carecare would make a shift to palliative would make more sense in light of his suffering andand more sense in light of his suffering decreased prospect of cure. At this stage decreased prospect of cure. At this stage of of his his illness, however, there seems illness, however, there seems a great dealdeal thatthat cancan stillstill be be done, a a a great done, reasonable chance of cure, andand a nearly reasonable chance of cure, a nearly definite chance of dying withwith no no treatdefinite chance of dying treatment. Shifting to palliative carecare at this ment. Shifting to palliative at this stage would notnot be ethically appropriate stage would be ethically appropriate for for a child withwith parental support. It It a child parental support. should notnot be considered for for B.K.B.K. should be considered Of Of course, thisthis is not to to ignore thethe course, is not ignore oncologist’ s concerns. Children whowho oncologist’ s concerns. Children

undergo BMTBMT need parental support. undergo need parental support. TheThe oncologist raises thethe concern thatthat oncologist raises concern thethe highhigh morbidity treatment maymay “add morbidity treatment “add insult to injury.” Being sick, having to to insult to injury.” Being sick, having come to to a hospital, andand go go through come a hospital, through painful treatments, even withwith parents painful treatments, even parents andand family as support, is aistough road family as support, a tough road for for anyany child. It isIt especially heartchild. is especially heartbreaking for for a child such as as B.K.B.K. whowho breaking a child such hashas probably already been through so so probably already been through much. B.K.B.K. willwill certainly have a tougher much. certainly have a tougher road ahead than he he would have withwith road ahead than would have a parent by by his his side. ThatThat does notnot a parent side. does mean thatthat he should be allowed to die. mean he should be allowed to die. What would addadd insult to injury would What would insult to injury would be be if B.K. were to lose his his fight withwith if B.K. were to lose fight cancer by default, without a concerted cancer by default, without a concerted effort by all to create a surroeffort by involved all involved to create a surrogategate family around him.him. TheThe question is is family around question notnot whether to aggressively treat his his whether to aggressively treat AMLAML butbut howhow to provide himhim withwith thethe to provide psychosocial support that he will need psychosocial support that he will need during treatment. during treatment. TheThe wayway to do thatthat is straightforward. to do is straightforward. First, talktalk to him. B.K.B.K. is 8isyears oldold andand First, to him. 8 years by all a smart child. What does byaccounts all accounts a smart child. What does he understand andand want? What areare his his he understand want? What fears? What comforts him? AreAre there fears? What comforts him? there more constructive outlets for for his his anger, more constructive outlets anger, healthy distractions, or or strategies for for healthy distractions, strategies avoiding his his trigger points? Many chil-chilavoiding trigger points? Many dren in our care actact out,out, hidehide medidren in our care medication, cation,deny denysymptoms, symptoms,andandhave have tantrums, and seasoned staff are very tantrums, and seasoned staff are very good at providing compassionate care good at providing compassionate care in the faceface of even thethe most challenging in the of even most challenging behavior. TheThe case mentions thatthat B.K.B.K. is is behavior. case mentions in the inpatient psychiatric ward andand in the inpatient psychiatric ward thatthat 1 of1 the nurses there hashas considof the nurses there considered fostering him.him. TheThe psychiatric ered fostering psychiatric nursing staffstaff areare likely more comfortnursing likely more comfortableable andand skilled at caring for for children skilled at caring children withwith his his behavioral issues. They might behavioral issues. They might consider cross-staffing nurses between consider cross-staffing nurses between psychiatry andand oncology. WithWith these psychiatry oncology. these types of of strategies, B.K.’B.K.’ s behavioral types strategies, s behavioral problems might be manageable. problems might be manageable. It isIt also important to appreciate thethe is also important to appreciate reasons for for acting outout in children such reasons acting in children such as as B.K.B.K. HisHis behavior is common withwith behavior is common

children whowho have suffered transience, children have suffered transience, neglect, andand often abuse associated neglect, often abuse associated withwith a life in and outout of foster andand group a life in and of foster group homes. Although concerns about non-nonhomes. Although concerns about compliance sometimes justify denial compliance sometimes justify denial or or delay of solid organ transplants delay of solid organ transplants in incompetent competentadults, adults,theytheydo donotnot justify similar responses to atochild. B.K.B.K. justify similar responses a child. exhibits attention-seeking, negative be- beexhibits attention-seeking, negative havior because he is for for affection havior because hehungry is hungry affection andand attention, notnot because he he is irreattention, because is irresponsible. sponsible. Yoram Unguru Yoram Unguru Good ethics starts withwith good facts andand Good ethics starts good facts from thethe facts in this case, it would seem from facts in this case, it would seem thatthat B.K.’B.K.’ s chances of survival areare notnot s chances of survival veryvery good. Chances of of survival areare good. Chances survival worse worseafter aftera arelapse. relapse.Conversely, Conversely, children childrenwithwiththethenucleophosmin nucleophosmin1 1 mutation have a better prognosis thanthan mutation have a better prognosis 1 1 others. others. TheThe treatment of choice for for relapsed treatment of choice relapsed AMLAML is an HSCT from an an HLA-matched is an HSCT from HLA-matched related donor. Although we we areare toldtold related donor. Although thatthat B.K.B.K. hashas a “near match,” we we do not a “near match,” do not know thethe extent of of mismatch. Addiknow extent mismatch. Additionally, we are not told what stem cell tionally, we are not told what stem cell source is being pursued (marrow, pe- pesource is being pursued (marrow, ripheral blood, or umbilical cord blood). ripheral blood, or umbilical cord blood). These areare important questions because These important questions because theythey affect bothboth thethe potential success of of affect potential success thethe transplant andand its its toxicities, as as transplant toxicities, unrelated-transplants areare associated unrelated-transplants associated withwith a higher likelihood of of graft re- rea higher likelihood graft jection andand a greater degree of GVHD. jection a greater degree of GVHD. TheThe transplant team’ s requirement for for transplant team’ s requirement a stable home is not unreasonable. a stable home is not unreasonable. Rigid adherence withwith thethe posttransRigid adherence posttransplant medication regimen andand regular plant medication regimen regular follow-up areare critical to to guarantee follow-up critical guarantee success. In the immediate posttranssuccess. In the immediate posttransplant period, children often require plant period, children often require multiple medications and frequent multiple medications and frequent clinic visits. Accordingly, a successful clinic visits. Accordingly, a successful transplant is aisjoint endeavor simultatransplant a joint endeavor simultaneously neouslydependent dependenton onhealth healthcare care providers andand patients/families. An An providers patients/families. unstable home environment makes B. B. unstable home environment makes K.’sK.’ prognosis worse than it would be in s prognosis worse than it would be in 937 937

PEDIATRICS Volume 130, 130, Number 5, November 20122012 PEDIATRICS Volume Number 5, November

Ethics Rounds: A Casebook in Pediatric Bioethics Part II Downloaded from from http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf Downloaded http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf by American Academy of Pediatrics, William Larkin by American Academy of Pediatrics, William Larkin

91

to proceed with the with trans-the transdetermined period of period time. Identifying a stable home. It ishome. appropriate for the fordeciding deciding to proceed determined of time. Identifying a stable It is appropriate the have not already so, done theso,person entity or responsible for team to team be concerned that non-that plant, plant, if they have notdone already theorperson entity responsible for to be concerned non- if they the transplant team should this is essential. It is onlyIt fair to fair to adherenceadherence with thewith posttransplant the transplant teamformulate should formulate this is essential. is only the posttransplant objective objective criteria that qualify dis- orcommit/expose the child to upfront regimen regimen and B.K.’sand “issues” jeop-will jeopcriteria thatorqualify discommit/expose thethe child to the upfront B.K.’s will “issues” qualify a child from proceeding with conditioning regimen, as well ardize the transplant’ s success and qualify a child from proceeding with conditioning regimen, asas well as ardize the transplant’s success and the procedure. thus cause B.K.cause muchB.K. pain and pain suffertransplanttransplant and posttransplant comthe procedure. thus much and sufferand posttransplant coming with no benefit. benefit.Perhaps the plications, if careful ifconsideration has ingcompensatory with no compensatory plications, careful consideration has lengthy afPerhaps thehospitalization lengthy hospitalization afbeen given to this issue. been given to this issue. ter HSCT (typically on the order of $30 ter HSCT (typically on the order of $30 However, However, in light ofinhislight poor prognosis of his poor prognosis days) might used be to educate days)bemight used to B.K. educateThe B.K.job is without HSCT, it isHSCT, morally It iseasy. difficult without it isproblematic morally problematic Thenotjobeasy. is not It is to difficult to regarding the importance of compliregarding the importance of complito categorically refuse B.K.refuse a potentially prepare prepare even theeven mostthe emotionally to categorically B.K. a potentially most emotionally ance. It isance. also important to remember It is also important to remember life-savinglife-saving and nonexperimental therstable family, parents dedi-fully dediand nonexperimental therstablewith family, with fully parents that B.K. that has B.K. a potential ally in the has a potential ally incated the to and apy merely the basis of his social bonded the child, for the apyonmerely on the basis of his social cated to andtobonded to the child, for the psychiatric nurse who is considering psychiatric nurse who is considering situation.situation. “Social situation” is a vagueis a vague potential potential complications during and “Social situation” complications during and becomingbecoming his temporary guardian.guardian. On his temporary On the after and loaded I would to know after transplant. Even in the most andterm. loaded term.like I would like to know the transplant. Even in the most dischargedischarge from a transplant unit, chil-unit, ideal from a transplant chil- situation what exactly theexactly team means bymeans “socialby “social (ie, matched sibling sibling what the team ideal situation (ie, matched dren needoften to beneed in close to beproximity in close proximity situation.”situation.” Do they mean B.K.’mean s lackB.K.’ of s lack Do they of oftendren donor transplant for a nonmalignant donor transplant for a nonmalignant the hospital ongoing In- care.condition to the for hospital for care. ongoing Ina stable home environment? His psy- His topsya stable home environment? such as severe condition such as aplastic severe aplastic stead of returning home, many chilstead of returning home, many chilchiatric diagnoses? Is the team’ s quasichiatric diagnoses? Is the team’s quasianemia) there is athere level of anemia) is auncertainty level of uncertainty live at aliveRonald dren temporarily at a Ronald refusal torefusal transplant based onbased a gut on adren to transplant gut temporarily about howabout muchhow care will be required much care will be required McDonald House or similar facility. McDonald House or similar facility. feeling orfeeling previous experience with or previous experience with in the years after the transplant even if even if in the years after the transplant Thus, staying a Ronald Thus, instaying in a McDonald Ronald McDonald children in similarinsituations in whom in whom children similar situations the child the survives It is dif- It is difchild treatment. survives treatment. House servecan dualserve purposes. First, dual purposes. First, transplanttransplant was morewas difficult? do How more How difficult? do canHouse ficult to ficult presume that the that potential to presume the potential by virtue of being in a stable and by virtue of being in a stable medical and foster they weigh risk theythese weighpsychosocial these psychosocial risk mother in the in the medical fosteridentified mother identified thefacility, transplant team can teamcase trusted the transplant can couldcase factors against s ownB.K.’ wishes factorsB.K.’ against s ownand wishestrusted and facility, be adequately preparedprepared for could be adequately for feel better s post-HSCT feel about better B.K.’ about B.K.’s post-HSCT preferences? preferences? the potential difficult outcomes. Long- Longthe potential difficult outcomes. course. Second, timethis can time afford course. this Second, can afford term (years) to medicatermcommitment (years) commitment to medicaAs presented, it seems itthat the transAs presented, seems that the transB.K. and the nurse an opportunity to B.K. and the nurse an opportunity to tion delivery, clinic visits, evenand even tion delivery, clinicand visits, plant teamplant has team not met hasB.K. notPerhaps met B.K.the Perhaps the their relationship outside outside strengthen their relationship multiple multiple admissions to the hospital admissions to the hospital team would consider meeting this “in- thisstrengthen team would consider meeting “inthe psychiatry unit, in a unit, safe in and neu- and could the psychiatry a safe neu- be could required. Given thisGiven possibe required. this possitelligent” telligent” boy who boy seemingly appre- apprewho seemingly tral environment. tral environment. bility, it would necessary to discussto discuss bility,be it would be necessary ciates what it means have relapsed ciates what ittomeans to have relapsed with this with individual the level the to which this individual level to which AML and AML in doing so,doing they might re-might reand in so, they she would commit. Even with thiswith this she would commit. Even consider consider their alternatives. B.K. is Myers Myers their alternatives. B.K.C. Douglas is C. Douglas commitment, foster care can be tercommitment, foster care can be terportrayedportrayed as inquisitive and interested as inquisitive and interested The oncologist’ s questions question has 2 parts. The oncologist’ has 2 parts. minated by the foster parents at any minated by the foster parents at any in knowing about hisabout disease. Has in knowing his disease. Has first The The partfirst is relatively easy to easy to part is relatively time. This possibility should beshould consid-be considtime. This possibility anyone asked whathimhe what under-he underanyonehim asked answer; answer; the second, so simple. the not second, not so simple. ered. ered. stands of stands his current in general of hisstatus current status in general First, is First, it appropriate to consider is it appropriate to consider and transplant specifically? Has he had and transplant specifically? Has hethe hadpatient’s Part 2 of the question more difficult Part 2 of theis question is moretodifficult to highly unstable and un- and unthe patient’s highly unstable an opportunity to expresstohis thoughts an opportunity express his thoughts answer. Should these psychosocial answer. Should these psychosocial certain social in weighing certainsituation social situation in weighing and wishes regard ongoing and with wishes with toregard to ongoing considerations lead to a recommendaconsiderations lead to a recommendathe risksthe andrisks benefits proceeding and of benefits of proceeding care? Thiscare? is imperative before making This is imperative before making a transplant should not be not be that a transplant should with the BMT? In my opinion, is not it istion with the BMT? In my itopinion, not that tion any decision. any decision. To me, that turnsthat on turns the on the performed? To me, only appropriate but essential to con- to performed? only appropriate but essential conI would want to know prognosis. I would wantmore to know more The overriding factor thatfactor should drive The overriding that should drive sider all sider barriers to propertocare, in- care,prognosis. all barriers proper indonor.the Clarification of “nearlyof “nearly the decision B.K.’s well-being (and not (andcluding donor. Clarification theisdecision is B.K.’s well-being not donor and the and about cluding availability donor availability the theabout matched HLA-matched donor” would others’ interests). B.K. is at no matched HLA-matched donor” would others’ interests). B.K.fault is atfor no faultavailability for of properofcaretakers. It is availability proper caretakers. It is be necessary for any attempt at cal- at calhis mother’ behaviors and his prebe necessary for any attempt to consider who will be rehiss mother’ s behaviors and his essential preessential to consider who will be reculations of potential complications dicament.dicament. Accordingly, refusing him culations of potential complications for delivery of essential Accordingly, refusing sponsible him sponsible for delivery of essential There may be significare because of “socialof issues” medications to prevent GVHD and posttransplant. There may be significare because “social isissues” is medications to prevent GVHD posttransplant. and in outcomes between between punishingpunishing him for him something for infections. SomeoneSomeone will havewill to be cant difference in outcomes for something for infections. have tocant be difference at individual institu- instituwhich he which is not he to blame andblame is a path for getting to upB.K. to 3to updonor donor sources at individual is not to and is a responsible path responsible forB.K. getting to 3 sources preferablypreferably not embarked on. Before outpatientoutpatient visits each week for week an un-for antions mismatched adult unrelated not embarked on. Before visits each un- (eg,tions (eg, mismatched adult unrelated 938

KELLEY 938et al KELLEY et al 92

PEDIATRIC COLLECTIONS

oaded from http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf Downloaded from http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf erican Academy of Pediatrics, William Larkin

SPECIAL ARTICLE–ETHICS ROUNDS SPECIAL ARTICLE–ETHICS ROUNDS

donor; 5/6,5/6, 4/6,4/6, or 3/6 cordcord blood; double donor; or 3/6 blood; double cordcord blood). OneOne could consider the the bi- biblood). could consider ological mother as aashaploidentical do- doological mother a haploidentical nor.nor. For For context, many institutions do not context, many institutions do not offeroffer thisthis form of transplant because of of form of transplant because the the significant complications that can significant complications that can arise afterafter transplant fromfrom a donor withwith arise transplant a donor onlyonly halfhalf of the HLA’HLA’ s matched. of the s matched. We We havehave performed transplants in in performed transplants a number of children with behava number of children with behavioralioral disorders andand absent parents. disorders absent parents. TheThe outcomes havehave been positive in in outcomes been positive regard to their emotional andand psychoregard to their emotional psychological outcomes. I find it hard to argue logical outcomes. I find it hard to argue thatthat social status cancan alone be grounds social status alone be grounds for for denial of aof standard of care to to denial a standard of care children. children. For For me,me, much more would hinge on the much more would hinge on the medical variables, particularly the the do- domedical variables, particularly nornor source, which would change the the source, which would change likelihood of long-term survival andand the the likelihood of long-term survival potential for for chronic, severe/systemic potential chronic, severe/systemic GVHD. If the prognosis for for survival GVHD. If the prognosis survival waswas sufficiently low,low, thatthat would sway me me sufficiently would sway not not to offer transplant, especially in in to offer transplant, especially a case such as as thisthis withwith significant a case such significant psychosocial riskrisk factors. psychosocial factors.

PART II II PART Case Presentation Case Presentation TheThe ethics consultants’ opinion waswas ethics consultants’ opinion thatthat the the patient should not be denied patient should not be denied a BMT on the grounds of an a BMT on the grounds of unstable an unstable social situation. Instead, theythey recomsocial situation. Instead, recommended thatthat the the hospital andand state mended hospital state agencies work to find an an immediate agencies work to find immediate medical foster placement. TheThe state medical foster placement. state case worker andand guardian ad ad litem case worker guardian litem insisted thatthat theythey were trying butbut insisted were trying could not not identify a suitable medical could identify a suitable medical foster home. TheyThey were clearly overfoster home. were clearly overburdened, did did not not know B.K.B.K. well,well, did did burdened, know not not feelfeel comfortable making “life“life andand comfortable making death decisions” for for a child theythey did did death decisions” a child not not know, and preferred to follow know, and preferred to follow “whatever decision the the oncologist “whatever decision oncologist thinks is best.” TheThe oncologist, in turn, thinks is best.” oncologist, in turn, feels thisthis is placing too too heavy a burfeels is placing heavy a burdenden on on him.him. WhoWho should make decishould make decisions for for B.K.?B.K.? sions

Yoram Unguru Yoram Unguru Decisions concerning carecare areare bestbest Decisions concerning made independent of social criteria; made independent of social criteria; consequently, the the ethics team should be be consequently, ethics team should commended for for their recommendation commended their recommendation to proceed withwith HSCT. TheThe question of of to proceed HSCT. question whowho should make decisions on B.K.’ s s should make decisions on B.K.’ behalf, the the state or B.K.’ s pediatric on- onbehalf, state or B.K.’ s pediatric cologist, demands a basic appreciation cologist, demands a basic appreciation of the limits of proxy consent. Parental of the limits of proxy consent. Parental authority is not absolute andand when authority is not absolute when a parent’ s decision is not in ainchild’ s s a parent’ s decision is not a child’ bestbest interest, the the doctrine of parens interest, doctrine of parens patriae allows the the state to intervene patriae allows state to intervene andand act act as as a “surrogate parent” for for a “surrogate parent” those whowho cannot carecare for for or protect those cannot or protect themselves. themselves. TheThe moral rationale behind thisthis legal moral rationale behind legal practice is that children areare simultapractice is that children simultaneously members of their ownown family neously members of their family andand members of the larger community. members of the larger community. TheThe state hashas authority to intervene state authority to intervene when parents fail fail to to protect family when parents protect family members who are also community members who are also community members. It isIt troubling, but but not not un- unmembers. is troubling, usual, thatthat B.K.’B.K.’ s case worker andand usual, s case worker guardian ad ad litem do do not not know himhim guardian litem know well,well, especially as he been in state especially as has he has been in state custody for for 5 years. custody 5 years. ThisThis casecase highlights the the distinction highlights distinction between recommending a treatment between recommending a treatment andand actually deciding on and accepting actually deciding on and accepting responsibility, something typically re- reresponsibility, something typically served for for parents. Based on B.K.’ s best served parents. Based on B.K.’ s best interest, his his oncologist hashas already in- ininterest, oncologist already dicated his his preference to proceed withwith dicated preference to proceed HSCT, a potentially life-saving therapy. HSCT, a potentially life-saving therapy. TheThe oncologist must nownow decide if heif ishe is oncologist must decide willing to shoulder the the burden for for thisthis willing to shoulder burden decision. His His reticence is understanddecision. reticence is understandable. able. In addressing the the question of of whowho In addressing question should make decisions for for B.K.,B.K., the the should make decisions ethical virtue of fidelity, andand the the ethical ethical virtue of fidelity, ethical concept of of a fiduciary, areare helpful. concept a fiduciary, helpful. Physicians serve as fiduciary of their Physicians serve as fiduciary of their patient. In this role,role, theythey areare morally patient. In this morally obligated to protect the the interests andand obligated to protect interests promote the the health of their patients. promote health of their patients. ThisThis ethical tenet cancan be traced back to to ethical tenet be traced back

the the Scottish physician/ethicist, John Scottish physician/ethicist, John 2 This 2 This is especially truetrue in B.K.’ s s Gregory. is especially in B.K.’ Gregory. casecase as he a trustee; his his mother as lacks he lacks a trustee; mother is unable to decide for for him,him, andand his his is unable to decide court-appointed guardian is unwilling court-appointed guardian is unwilling to make decisions on his behalf. Fidelto make decisions on his behalf. Fidelity, on other hand, callscalls for for placing ity, the on the other hand, placing the the patient’ s interests first,first, ahead of of patient’ s interests ahead the the physician’ s personal interests, andand physician’ s personal interests, is the basis for for a meaningful therais the basis a meaningful therapeutic relationship. peutic relationship. TheThe American Academy of Pediatrics, in in American Academy of Pediatrics, the the spirit of of Gregory, hashas stated, spirit Gregory, stated, “Pediatrician’ s duties to their patient “Pediatrician’ s duties to their patient areare independent of parental wishes or or independent of parental wishes 3 Following 3 Following thisthis dictum proxy consent.” dictum proxy consent.” in this case, the the pediatric oncologist in this case, pediatric oncologist must assume andand bearbear responsibility must assume responsibility for for making decisions on B.K.’ s behalf. A A making decisions on B.K.’ s behalf. lessless desirable alternative is for the the desirable alternative is for ethics committee to collectively make ethics committee to collectively make decisions for for him.him. However, given his his decisions However, given oncologist’ s long-standing relationship oncologist’ s long-standing relationship withwith B.K.,B.K., I believe thatthat the the pediatric I believe pediatric oncologist is best-suited to represent oncologist is best-suited to represent B.K.’B.K.’ s interests andand to decide for for himhim s interests to decide while the the state continues the the search while state continues search for an foster family for for B.K.B.K. forappropriate an appropriate foster family C. Douglas Myers C. Douglas Myers TheThe state hashas “charged” the the guardian ad ad state “charged” guardian litem andand casecase worker withwith making litem worker making medical decisions; an unfortunate andand medical decisions; an unfortunate difficult position, but but a position theythey areare difficult position, a position obliged to fulfill. A discussion within the the obliged to fulfill. A discussion within state institution maymay havehave to take place state institution to take place regarding moving up the chain of comregarding moving up the chain of command for for decision-making on behalf of of mand decision-making on behalf the the child, but but a decision must be made. child, a decision must be made. It isIt not unreasonable for for the the state is not unreasonable state workers to decide to move forward or workers to decide to move forward or cancel transplant plans based on on the the cancel transplant plans based recommendation of the medical team. recommendation of the medical team. TheThe oncologist and transplant physioncologist and transplant physicians willwill havehave to come together to to cians to come together make a recommendation regarding make a recommendation regarding whether to proceed withwith the the transplant. whether to proceed transplant. TheThe recommendation should consider recommendation should consider the the patient’ s pretransplant comorbidpatient’ s pretransplant comorbidities, the the donor source andand degree of of ities, donor source degree 939 939

PEDIATRICS Volume 130, 130, Number 5, November 20122012 PEDIATRICS Volume Number 5, November

Ethics Rounds: A Casebook in Pediatric Bioethics Part II Downloaded from from http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf Downloaded http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf by American Academy of Pediatrics, William LarkinLarkin by American Academy of Pediatrics, William

93

match, risk of relapse. disease relapse. protection system. could fall patients, and especially children. match, and risk and of disease protection system. He could He easily falleasilypatients, and especially children. In that In that Anticipated medication comthrough thenot cracks, notpeople because people has to consider Anticipated outpatientoutpatient medication comthrough the cracks, because sense, thesense, team the hasteam to consider these these pliance risk and foster care will him want very carefully in acrafting to butwhen because when too many pliance risk and foster care status willstatuswant facts veryfacts carefully in crafting care a care to buthim because too many a role in the length of hospital andcreatively thinking creatively people share responsibility, nobodyplan has and plan likely playlikely a roleplay in the length of hospital thinking about howabout how people share responsibility, nobody has stay. address these challenges responsibility. For living a childaslivingto as stay. addresstothese challenges to give B.K.to give B.K. responsibility. For a child the best chance for success a ward of the state it is common to have the best chance for success with his with his a ward of the state it is common to have on presented, the facts presented, Based on Based the facts the most the most cancer treatment, severalinvolved adults in involved health cancer care treatment, and the and care the andcare and several adults health incare likelyforcourse for B.K. after a transplant likely course B.K. after a transplant aidre-in his redecisions and atoclear, lack single a clear, single emotionalemotional support support to aid intohis decisions and to lack of an1intense 1 to 3ofmonths of is that ofisanthat intense to 3 months covery. The of measure of a good decision-maker. The guardian covery. The measure a good society is society is decision-maker. The guardian and state and state by improvement. therapy therapy followed followed by improvement. how well it treats its most vulnerable social worker are responsible for how well it treats its most vulnerable social worker are responsible for There will be a slight chance that the There will be a slight chance that the members. This case shows what is at making treatment decisions in the members. This case shows what is at making treatment decisions in the course for this childbewould course for this child would 1 of be 1 of stake for one child when the social place of a parent, until B.K. has a perstake for one child when the social place of a parent, until B.K. has a persevere posttransplant illness and severe posttransplant illness and safety net is in tatters. But that should manent home. What the oncologist and safety net is in tatters. But that should manent home. What the oncologist and debilitating complications. long-term,long-term, debilitating complications. be anfor excuse for the physicians, medical team need to appreciate arebe annotexcuse not the physicians, medical team need to appreciate are and palliative care after Relapse Relapse and palliative care after nurses, and hospital administrators. the limitations of that role. nurses, and hospital administrators. the limitations of that role. transplant would take a course transplant would likely takelikely a course Instead, it should be a call to action. B.K. Instead, it should be a call to action. B.K. to that child would similar tosimilar that which thewhich child the would Court-appointed Court-appointed guardiansguardians and stateand state has had an unfair start in life and has had an unfair start in life and experience a transplant. If workers experience without awithout transplant. If social workers are usually resocial are usually rea hard journey. He likely faces a hard medical foster home a medicalafoster home cannot becannot found, be found, for multiple at journey. He likely faces an even an even sponsiblesponsible for multiple children children at tougher roadBut ahead. But he deserves tougher road ahead. he deserves B.K. should in the Patients hospital. Patients B.K. should stay in thestay hospital. a time, and,parents unlike or parents a time, and, unlike fosteror foster loving and support support careand thatcare any that any not be discharged are should notshould be discharged until theyuntil are theyparents, parents, may beatscarce thelovingthe they maythey be scarce the atthe child deserves. He deserves He deserves a fightinga fighting is a stable medicallymedically ready andready thereand is athere stable bedside. More important, not deserves. bedside. More important, they may they not maychild chance. chance. environment This ex- theknow environment available.available. This policy ex-policyknow well,itmaking child the well,child making difficultit difficult tends not only to transplant patients tends not only to transplant patients for his best interests. They to speak toforspeak his best interests. They but tohospitalized patients hospitalized for months but to patients for months the clinician’s helpdiffimaking Editor’ diffi- s Comments Editor’s Comments need the need clinician’s help making years in an intensive care nursery, or years or in an intensive care nursery, cult choices. cult choices. The consensus among the inexperts in The consensus among the experts for example, have periods for example, who maywho havemay periods Goodare parents fierce advocates for casethis case likely areflects a consensus Good parents fierceare advocates for this likely reflects consensus duringstay their of indeterminate during their of stay indeterminate their because children they because only of opinion societalabout opinion aboutsuch a case such their children carethey onlycare of societal a case disposition. dischargedischarge disposition. this. put, Simply put, children must their children. needs asanthis. as Simply children must for their for children. B.K. needsB.K. such an such it seems that a recommendaAlthough Although it seems that a recommendahas multiple not be access denied toaccess to potentially advocate.advocate. Instead, Instead, he has he multiple not be denied potentially the decision, still tion will tion makewill themake decision, it is still it isadvocates, advocates, none of is primarily treatments of none of whom is whom primarily life-savinglife-saving treatments because because of a recommendation a recommendation on whichon thewhich state the state focused him. maytobebring time to bring their parents’ inadequacies focused on him. Iton may be Ittime their parents’ inadequacies or be- or bewill havethe to make the The decision. will have to make decision. state The state B.K.’back s mother into theWhat picture. What theirpsychological own psychological B.K.’s mother into back the picture. cause ofcause their ofown will determine if the guardian will determine if the guardian ad litem/ ad litem/ is theof status of her recovery? she problems. The treatments is the status her recovery? Is she Isproblems. The treatments for suchfor such case will worker will ordecide or if their case worker decide if their can be challenging, capable of supervised hospital visits? children children can be challenging, expen- expencapable of supervised hospital visits? will upper requirelevel upper or a parent protocol protocol will require or levelEven and emotionally We Evenwho a parent whocustody has lostmay custodysive, may andsive, emotionally draining.draining. We has lost judicial overview and approval judicial overview and approval of the ofbethe rise tochallenges those challenges and be in involved medical decisions the risemust to those and involved medicalindecisions at the atmust final decision. final decision. theB.K. costs. B.K. underwent his hospital. Shethe may be the advocate that the pay pay costs. underwent his hospital. She may be advocate that transplant, and afamily fosterwas family was needs. If she cannot stepthe up, thentransplant, the and a foster he needs.he If she cannot step up, then Kelly MaureenMaureen Kelly foundfor tohim careduring for him during found to care and afterand after cliniciansclinicians must. must. the transplant. the transplant. B.K. iswithin adrifta within a complex he- support Socialissupport to the clinical B.K. is adrift complex heSocial criticalistocritical the clinical alth and system and overwhelmed child Lantos,Editor Section Editor success and emotional of all —John D.—John alth system overwhelmed child Lantos,D.Section success and emotional well-beingwell-being of all

REFERENCES REFERENCES AmericanofAcademy of Committee Pediatrics, Committee 2. LB. McCullogh LB. Contributions of ethical theory al. 3. American3. Academy Pediatrics, Contributions of ethical theory 1. Brown 1.P, Brown McIntyreP, E,McIntyre Rau R,E, etRaual. R, et2. McCullogh on Informed Bioethics. consent, Informed parental consent, parental pediatric ethics: pediatricians The incidence and signclinical signon Bioethics. to pediatrictoethics: pediatricians and parentsand parents The incidence and clinical permission, assent inpractice. pediatric practice. as co-fiduciaries pediatric In:patients. permission, In: ificance of nucleophosmin and assent and in pediatric as co-fiduciaries of pediatricof patients. ificance of nucleophosmin mutations mutations on American Bioethics, Academy American Academy G, ed.Bioethics. PediatricCambridge, Bioethics. Cambridge, in AML. childhood Blood. 2007;110(3):979– Committee Committee on Bioethics, Miller G, ed.Miller Pediatric in childhood Blood.AML. 2007;110(3):979– of Pediatrics. Pediatrics. 1995;95(2):314–317 Pediatrics. 1995;95(2):314–317 MA: Cambridge University Press; 2010:11–21 985 of Pediatrics. MA: Cambridge University Press; 2010:11–21 985

940 94

940et al KELLEY et al KELLEY PEDIATRIC COLLECTIONS

Downloaded from http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf Downloaded from http://publications.aap.org/pediatrics/article-pdf/130/5/936/1057747/peds_2011-3363.pdf by American Academy William of Pediatrics, by American Academy of Pediatrics, LarkinWilliam Larkin

COVID-19 and Racism

COVID and Racism COVID-19, declared a pandemic by the World Health Organization (WHO) on March 11, 2020, has caused major social and economic disruptions. The year 2020 also saw widespread protests following the killing of George Floyd by police officers in Minneapolis on May 25. These events are linked in important ways: The pandemic may have contributed to the protests, and the protests focused greater attention on racial disparities in the effects of and response to the pandemic. Several Ethics Rounds articles published during this time address issues related to the pandemic and/or systemic racism. The COVID-19 pandemic evolved rapidly in 2020. The WHO announced that a novel coronavirus may be the cause of a pneumonia outbreak in Wuhan, China on January 9, issued a global health emergency on January 31, and declared a pandemic on March 11. Interventions to reduce the pandemic’s effect included travel restrictions, school closings, stay-at-home orders, and masking requirements. “Operation Warp Speed,” a program with a goal to facilitate the development and production of a safe and effective vaccine, was launched by the White House in May 2020. The U.S. Food and Drug Administration granted an Emergency Use Authorization (EUA) for Pfizer and BioNTech’s COVID-19 vaccine on December 11 and Moderna’s a week later.1 The effects of the pandemic have been substantial. As of September 2022, the Centers for Disease Control and Prevention (CDC) report almost 95 million total cases and more than 1 million total deaths due to COVID-19.2 In addition, the CDC estimates 1.2 million excess deaths during the pandemic.3 (Excess deaths are the difference between the observed and expected number of deaths. This is a useful estimate because some deaths directly due to COVID-19 may be assigned to other causes. It also accounts for deaths indirectly due to COVID-19, eg, a person who died of a heart attack because of the fear over accessing health care, or suicide due to unemployment and social isolation.) This has resulted in substantial strains on the healthcare system. COVID-19 also has had broader effects on the economy and education. Unemployment in the United States increased from 3.5% to a peak of 15%, and labor force participation (the percentage of the population ages 16 and older who are employed) remains 1.8 percentage points below its pre-pandemic peak.4 The pandemic potentially resulted in approximately $1.3 trillion in lost economic output.5 The pandemic also had significant social effects, including detrimental effects on students’ education. One study found that math test scores in grades 3-8 decreased by 0.2-0.27 standard deviations between the falls of 2019 and 2021; reading scores decreased by 0.09-0.18 standard deviations.6 The pandemic raised significant ethical issues, including visitor restrictions and the allocation of critical care resources, vaccines, and pharmaceuticals. Because children generally were less severely affected by COVID-19, some of these issues, such as the allocation of critical care resources, were less pressing for pediatric healthcare providers. The characteristics of children made other issues, such as visitor restrictions and access to vaccines, more pressing. Ethics Rounds addressed both of these topics. The killing of George Floyd engendered protests that were larger and more numerous than protests following previous similar events.7 The Black Lives Matter (BLM) movement began as a series of social media posts following the acquittal on July 13, 2013 of George Zimmerman for the murder of Trayvon Martin. The BLM movement is a decentralized and horizontally structured social movement without major leader figures that uses social media to organize protests in response to police violence against African Americans and racial bias in the criminal justice system.8 Protests followed the killing of Eric Garner and Michael Brown in 2014, the death of Freddie Gray in 2015, and the killing of Anton Sterling and Philando Castile in 2016.9 The 2020

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

97

protests following the killing of Floyd, as well as those of Ahmaud Arbery and Breonna Taylor in the same year, were more widespread, more frequent, and larger. Protests were held in all 50 states, in both large and small cities, and around the world. In some cities, multiple protests were held in a single day and/or protests were held on multiple days.10 Between 15 and 26 million people in the U.S. participated in these protests.11 The COVID-19 pandemic potentially contributed to BLM’s momentum following Floyd’s murder. Social scientists found an association between being negatively affected by the pandemic financially and attending a protest.12 Some protesters may also have participated out of discontent with the government, rather than in support of BLM, or due to having more free time.13 The protests may have drawn greater attention to the pandemic’s disproportionate effect on members of minority groups. Not only did Black, Indigenous, and People of Color have poorer health outcomes, they were disproportionally affected by the economic downturn caused by the pandemic. Black or African American, Hispanic or Latino, and American Indian or Alaska Native populations have higher rates of cases, hospitalization, and death compared to white, nonHispanic persons. Black persons, for example, have a 2.2 relative rate ratio of hospitalization compared to white persons. These differences are not due to intrinsic biological susceptibilities, but rather to differential disease incidence, comorbidity prevalence, and socioeconomic status associated with structural racism. With respect to economic effects, the peak unemployment rate for Black workers was 16.7% compared to 14.1% for white workers; for Hispanic workers it was 18.5% compared to 13.6% for non-Hispanic ones. The protests also lead to increased attention to structural racism within medicine and medical ethics, particularly in the allocation of scarce resources. Algorithms for allocating scarce resources, such as ventilators or critical care, generally have focused on saving the most lives or the most life-years possible. Some attention has been given to other factors such as age or narrow social utility, ie, prioritizing individuals essential to the disaster response such as health care providers, police officers, and/or utility workers. During the COVID-19 pandemic, the disparate effects of allocation protocols on members of racial and ethnic minority groups, as well as individuals with disabilities, were emphasized. Due to concerns about explicitly incorporating race and ethnicity into the protocols for political, legal, or logistical reasons, some suggested using other markers of health disparities such as the Area Deprivation Index. Similar considerations have been incorporated in schemes for allocating vaccines. The articles in this section also address systemic racism in health care and its implications, including articles on responding to microaggressions, facilitating racially concordant care for Black patients, and responding to requests for a white doctor. References 1. American Journal of Managed Care. A timeline of COVID-19 developments in 2020. AJMC.com https://www.ajmc.com/ view/a-timeline-of-covid19-developments-in-2020. January 1, 2021. Accessed September 5, 2022. 2. Centers for Disease Control and Prevention. COVID Data Tracker. September 2, 2022. CDC.gov. https://covid.cdc.gov/ covid-data-tracker/#datatracker-home. Accessed September 6, 2020. 3. Centers for Disease Control and Prevention. National Center for Health Statistics: COVID-19 mortality overview. CDC.gov. https://www.cdc.gov/nchs/covid19/mortality-overview.htm. May 16, 2022. Accessed September 5, 2022. 4. Congressional Budget Office. Additional information about the economic outlook: 2021 to 2031. CBO.gov. https://www.cbo.gov/ publication/57014#_idTextAnchor010. February 2021. Accessed September 5, 2022. 5. Burns R, Teran N. Weighing the cost of the pandemic. Institute for Progress. Available at https://progress.institute/ weighing-the-cost-of-the-pandemic/. April 21, 2022. Accessed September 5, 2022. 6. Kuhfed M, Soland J, Lewis K. Test score patterns across three COVID-19-impacted school years. Available at https://edworkingpapers.com/sites/default/files/ai22-521.pdf. January 2022. Accessed September 5, 2022. 7. Taylor DB. George Floyd protests: A timeline. The New York Times. Available at https://www.nytimes.com/article/ george-floyd-protests-timeline.html. November 5, 2021. Accessed September 5, 2022. 8. Clayton DM. Black Lives Matter and the Civil Rights Movement: A comparative analysis of two social movements in the United Sates. Journal of Black Studies. 2018;49(5):448-480; Chase G. The early history of the Black Lives Matter movement, and the implications thereof. Nev L J. 2018;18(3):1091-1112.

98

PEDIATRIC COLLECTIONS

9. Australian Broadcasting Corporation (ABC) News. Timeline: The Black Lives Matter movement. ABC.net.au. https://www.abc.net.au/ news/2016-07-14/black-lives-matter-timeline/7585856?nw=0&r=HtmlFragment. February 22, 2018. Accessed September 5, 2022. 10. Putnam L, Chenoweth E, Pressman J. The Floyd protests are the broadest in U.S. history – and are spreading to white, small-town America. The Washington Post. https://www.washingtonpost.com/politics/2020/06/06/floyd-protests-are-broadest-us-historyare-spreading-white-small-town-america/. June 6, 2020. Accessed September 5, 2022. 11. Buchanan L, Bul Q, Patel JK. Black Lives Matter may be the largest movement in U.S. history. The New York Times. https://www.nytimes.com/interactive/2020/07/03/us/george-floyd-protests-crowd-size.html. July 3, 2020. Accessed September 5, 2022. 12. Arora M. How the coronavirus pandemic helped the Floyd protests become the biggest in U.S. history. The Washington Post. Available at https://www.washingtonpost.com/politics/2020/08/05/how-coronavirus-pandemic-helped-floyd-protests-becomebiggest-us-history/. August 5, 2020. Accessed September 5, 2022. 13. Gause L, Arora M. Not all of last year’s Black Lives Matter protesters supported Black Lives Matter. The Washington Post. https://www.washingtonpost.com/politics/2021/07/01/not-all-last-years-black-lives-matter-protesters-supported-black-lives-matter/. July 2, 2021. Accessed September 5, 2022. 14. Centers for Disease Control and Prevention. Risk for COVID-19 infection, hospitalization, and death by race/ethnicity. CDC.gov. https://www.cdc.gov/coronavirus/2019-ncov/covid-data/investigations-discovery/hospitalization-death-by-race-ethnicity.html. July 28, 2022. Accessed September 5, 2022. 15. Khazanchi R, Evans CT, Marcelin JR. Racism, not nace, drives inequity across the COVID-19 continuum. JAMA Netw Open. 2020;3(9):e2019933; doi: 10.1001/jamanetworkopen.2020.19933. 16. Congressional Research Service. Unemployment rates during the COVID-19 pandemic. https://sgp.fas.org/crs/misc/R46554.pdf. August 20, 2021. Accessed September 6, 2022. 17. Winslow GR. Triage and Justice. Berkeley, CA: University of California Press; 1982. 18. White DB, Lo B. Mitigating inequities and saving lives with ICU triage during the COVID-19 pandemic. Am J Respir Crit Care Med. 2021;203(3):287-295; doi: 10.1164/rccm.202010-3809CP. 19. National Academies of Sciences, Engineering, and Medicine. 2020. Framework for equitable allocation of COVID-19 vaccine. Washington, DC: The National Academies Press.

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

99

Microaggressions: Privileged Microaggressions: Privileged Observers’ Duty to Act Observers’ Duty to Act andand What They What They CanCan DoDo a,d

b,e

f

c,d

b,e MPH, c,d MEd, Jamilah M. Hackworth, EdD, Kotagal, Meera MD, Kotagal, O.N. RayII,Bignall II, MD, NdidiMD, Unaka, Jamilah M. Hackworth, EdD,a,d Meera MPH,MD, O.N. Ray Bignall MD,f Ndidi Unaka, MEd,MD, Armand H. Matheny Antommaria, MD, PhDc,d Armand H. Matheny Antommaria, MD, PhDc,d

and sexism that manifest as microaggressions are commonly RacismRacism and sexism that manifest as microaggressions are commonly experienced by members of minoritized These actions and comments experienced by members of minoritized groups.groups. These actions and comments erodesubjects’ their subjects’ andofsense of belonging. Individuals erode their vitalityvitality and sense belonging. Individuals from from minoritized areleft often in a quandary, weighing the potential minoritized groupsgroups are often in aleft quandary, weighing the potential benefitsbenefits andofrisks of addressing the comments. the burden to interrupt and risks addressing the comments. PlacingPlacing the burden to interrupt bias onbias on our marginalized colleagues is unjust. it is inappropriate to expect our marginalized colleagues is unjust. In part,Init part, is inappropriate to expect to dismantle a system that they not create. It is essential for them tothem dismantle a system that they did notdid create. It is essential for a individuals with privilege who observe microaggressions to address the a individuals with privilege who observe microaggressions to address the of Adolescent andMedicine, Transition Medicine, Divisions ofDivisions Adolescent and Transition b b c Surgery, cHospital Pediatric and Thoracic Pediatric General andGeneral Thoracic Surgery, Hospital speaker and support their colleagues. In this Ethics Rounds, we present 2 cases speaker and support their colleagues. In this Ethics Rounds, we present 2 cases Medicine,Children’ Cincinnati Children’Medical s Hospital Medical Center, Medicine, Cincinnati s Hospital Center, d e in which individuals from minoritized groups experience racism and sexism d e in which individuals from minoritized groups experience racism and sexism Cincinnati, Ohio; Departments of Pediatrics, Cincinnati, Ohio; Departments of Pediatrics, Surgery, Surgery, College of Medicine, University of Cincinnati, Cincinnati, that manifest as microaggressions. The first case involves a Black female College of Medicine, University of Cincinnati, Cincinnati, that manifest as microaggressions. The first case involves a Black female Ohio; and fDepartment of Pediatrics, Ohio; and fDepartment of Pediatrics, NationwideNationwide Children’s Children’s physician recommendations in a business being characterized physician makingmaking recommendations in a business meetingmeeting being characterized Hospital School ofThe Medicine, The University, Ohio State University, Hospital and Schooland of Medicine, Ohio State Columbus, Ohio by acolleague male colleague as emotional. The commentators how both gender Columbus, Ohio by a male as emotional. The commentators analyzeanalyze how both gender and race constrain theof range of acceptable emotions one may exhibit and race constrain the range acceptable emotions one may exhibit and theand the Drs Hackworth, Kotagal, Drs Hackworth, Kotagal, Bignall, andBignall, Unaka and haveUnaka all have all to through this workconcept through concept contributedcontributed significantlysignificantly to this work harm that this causes. The second case involves Black being internidentified being identified harm that this causes. The second case involves a Blackaintern design,and analysis, and interpretation of the and design,and analysis, interpretation of the by a parent as a custodian. Commentators describe how such microaggressions by a parent as a custodian. Commentators describe how such microaggressions literature,portions draftingofportions of manuscript, the initial manuscript, literature, drafting the initial the manuscript, andreviewing critically itreviewing it for revising therevising manuscript, and critically for cantrainees’ harm trainees’ performance andofsense of belonging. both cases, can harm performance and sense belonging. In bothIn cases, vitalDrcontent; Matheny Antommaria made substantial vital content; MathenyDrAntommaria made substantial contributions to the conception the work and observers did nothing only to spoke to the subject in private. Commentatorscontributions to the conception of the workofand observers did nothing or onlyor spoke the subject in private. Commentators critically for important revising it revising criticallyitfor important intellectualintellectual content; content; guidance regarding that bystanders can provideprovide specificspecific guidance regarding actionsactions that bystanders can take totake to and all authors the approved the final manuscript as and all authors approved final manuscript as submitted and agree to be accountable for all aspects submitted and agree to be accountable for all aspects upstanders and how they can decenter themselves and their becomebecome upstanders and how they can decenter themselves and their of the work. of the work. discomfort and leverage their privilege to interrupt microaggressions. By discomfort and leverage their privilege to interrupt microaggressions. By DOI: https://doi.org/10.1542/peds.2021-052758 DOI: https://doi.org/10.1542/peds.2021-052758 becoming upstanders, individuals can remove the disproportionate becoming upstanders, individuals can remove the disproportionate Accepted for publication Accepted for publication Aug 17, 2021Aug 17, 2021 responsibility for addressing microaggressions from marginalized colleagues. responsibility for addressing microaggressions from marginalized colleagues.

abstract abstract

Address correspondence M. Hackworth, EdD, Address correspondence to Jamilah to M. Jamilah Hackworth, EdD, Cincinnati Children’3333 s Hospital, Ave, MLC 4000, Cincinnati Children’ s Hospital, Burnet3333 Ave,Burnet MLC 4000, Cincinnati, OH 45229-3026. E-mail: jamilah.hackworth@ Cincinnati, OH 45229-3026. E-mail: jamilah.hackworth@ cchmc.org cchmc.org

(ISSN Print, Numbers: Print, 0031-4005; Online, PEDIATRICS PEDIATRICS (ISSN Numbers: 0031-4005; Online, Microaggressions takeona toll on Microaggressions are everyday Microaggressions take a toll Microaggressions are everyday verbal, verbal, 1098-4275).1098-4275). marginalized individuals, and their nonverbal, and environmental individuals, and their nonverbal, and environmental slights, slights,marginalized © 2021 by theAcademy AmericanofAcademy of Pediatrics Copyright ©Copyright 2021 by the American Pediatrics cumulative effect contributes to snubs, invalidations, or that insults that cumulative effect contributes to snubs, invalidations, or insults FINANCIAL DISCLOSURE: The authors have DISCLOSURE: The authors have indicated indicated of isolation, invisibility, and FINANCIAL send hostile, derogatory, or negative feelingsfeelings of isolation, invisibility, and send hostile, derogatory, or negative theyfinancial have norelationships financial relationships to this they have no relevant torelevant this 1 article to disclose. article to disclose. lack of1 value. messages to individuals solely messages to individuals solely on the on thelack of value. FUNDING: external funding. their marginalized FUNDING: No externalNofunding. basis ofbasis theirof marginalized group group 1 1 Racism and sexism that manifest as Racism and sexism that manifest as The term is a membership. membership. The term is a CONFLICT OF INTEREST: authors have POTENTIALPOTENTIAL CONFLICT OF INTEREST: The authorsThe have indicated theypotential have noconflicts potentialofconflicts microaggressions in the workplace indicated they have no interest of to interest to microaggressions in the workplace misnomer; to the subtle misnomer; “micro”“micro” refers torefers the subtle disclose. disclose. dilemmas for individuals dilemmas for individuals from from nature of microaggressions, nature of microaggressions, which which presentpresent minoritized on the receiving groups groups on the receiving many often peopledismiss often dismiss many people as beingas being minoritized To cite: Hackworth JM, KotagalJM, M,Kotagal Bignall M, ONRBignall II, et ONR II, et end of the microaggressive comment To cite: Hackworth or insignificant their impact;end of the microaggressive comment small orsmall insignificant in theirin impact; al. Microaggressions: al. Microaggressions: Privileged Privileged Observers’Observers’ Duty to Duty to and for bystanders (the observers of however, they are anything but subtle and for bystanders (the observers of however, they are anything but subtle Act They and What They Can Do. Pediatrics. Act and What Can Do. Pediatrics. these interactions). For individuals on or insignificant to the individuals these interactions). For individuals on or insignificant to the individuals who who 2021;148(6):e2021052758 2021;148(6):e2021052758 repeatedly experience the receiving the quandary repeatedly experience them. them. the receiving end, theend, quandary

Volume 148,6,number 6, December 2021:e2021052758 PEDIATRICSPEDIATRICS Volume 148, number December 2021:e2021052758

ROUNDS ETHICSETHICS ROUNDS

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021052758/1353917/peds_2021052758.pdf ded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021052758/1353917/peds_2021052758.pdf byAcademy AmericanofAcademy of Pediatrics, William Larkin can Pediatrics, William Larkin on 2022 26 August 2022 gust

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

101

involves weighing the emotional and professional costs of speaking up in environments where implicit and explicit biases are present versus the unspoken expectation and unjust responsibility to fight their own battles and dismantle systems of oppression, systems they did not create in the first place. Furthermore, the unyielding low threshold of disruption that will be tolerated from individuals from minoritized groups (particularly Black people) is very real. Among physicians traditionally underrepresented in medicine (UIM), disillusionment and fear of retaliation for speaking up against racism and other forms of discrimination are well documented in the literature.2 These instances underscore the hierarchy and power dynamics at play that erode inclusivity and one’s sense of belonging. For bystanders, the dilemma in addressing microaggressions is usually rooted in the discomfort associated with speaking up as well as in what implications speaking up may have on their relationships, ability to fit in, and professional advancement. The actions needed to dismantle oppressive systems can no longer be ignored or postponed. Bystanders must consistently leverage their privilege to make substantive change in their workplaces and communities. When these individuals speak up, they take on the role of an upstander, the burden of disruption no longer rests on the shoulders of the marginalized; it is shared more broadly. We all have an obligation to stand up for our colleagues when they experience microaggressions of any kind. Only then will we truly reach our fullest potential as individuals and organizations. In this Ethics Rounds, we present 2 cases in which individuals from minoritized groups experience racism and sexism that manifest as microaggressions in the workplace.

The cases are followed by commentaries from a pediatric surgeon, a pediatric hospitalist, a pediatric nephrologist, and an educator, who address the impact of interpersonal racism on individuals UIM and the importance of upstander interventions: situations in which bystanders or observers address biased or otherwise microaggressive statements or actions.

CASE 1 Dr Isabelle Smith is a Black physician in a large private pediatric practice. During a business meeting, Dr Smith and her colleagues were discussing modifying the clinic’s hours. After several of her colleagues shared their thoughts, Dr Smith stated the reasons that she did not agree with the proposed solutions and suggested another potential solution. Dr Jason Doe, a White colleague interrupted, “Isabelle, we understand that you do not agree with us, but it would be best if you left your emotions out of the discussion.” After the meeting ends, Dr Pam Jones, Dr Smith’s friend with whom she completed residency, comes to her office, and apologizes for their colleague’s comment and for not feeling comfortable speaking up during the meeting. Dr Kotagal, a Pediatric Surgeon, Comments In this case, Dr Smith’s contributions to a discussion regarding changes to the clinic’s hours are met with a response rooted firmly in her gender. This experience is one frequently met by women in the workplace, including those in medicine. The range of acceptable emotions for women is significantly restricted in professional (and often personal) settings. Emotions are often divided into those that are classically masculine, such as anger and pride, and feminine, such as

2

But even more central to this vignette is the labeling of women expressing any opinion as emotional. In addition to having a significantly restricted spectrum of societally acceptable emotions, the same emotions expressed by male counterparts are viewed differently. Men expressing emotion are viewed as passionate and dedicated, whereas women are seen as emotional or hysterical.3 Additionally, women are often believed to lack the ability to control their emotions. A similar reaction by a woman is more likely to be seen as overreacting rather than appropriate for a given circumstance. This narrow spectrum of acceptable emotion and the view that women lack control of their emotions are subsequently used as tools to undermine professional legitimacy. Women are viewed as less competent when they express anger or as presumptuous for having dominant or masculine emotions.4 These assumptions and views on women result in penalties, for example, lower salaries, fewer promotions or opportunities, and less status, all of which continue to reinforce gender and power hierarchies in the workplace.

HACKWORTH et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021052758/1353917/peds_2021052758.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

102

happiness and sadness. Expressions of anger in men are deemed to be congruent with the status and power thought to be associated with men, and thus men who express anger are more likely to be hired and given more status and opportunity. Women, however, experience the exact opposite. Women who express anger are less likely to be hired and are given lower salaries and less status.3,4 Women are expected to express warmth and nurturing behaviors but not anger or pride, which are considered dominant behaviors.

PEDIATRIC COLLECTIONS

Women are acutely aware of this narrow spectrum of acceptable emotions. This awareness may lead women to self-analyze and overscrutinize their actions, trying to find the perfect balance on the tightrope. Women may do this to (1) avoid being labeled emotional and (2) avoid the potential negative career repercussions and lost opportunities that come with such a label. These actions may result in women stifling their authenticity and lead to imposter syndrome, a psychological term that refers to feelings of inadequacy that persist despite evident success. The concept, originally known as imposter phenomenon, was first described in 1978 and is characterized by chronic self-doubt and a sense of intellectual fraudulence.5 The phenomenon renders affected people incapable of internalizing their accomplishments no matter how successful and accomplished they are in their careers.6,7 Imposter syndrome is often characterized as an inherent flaw commonly seen in women rather than a byproduct of sexism and other forms of discrimination. Hence, those who experience imposter syndrome in professional settings can be worn down by instances in which their thoughts and ideas are minimized, whereas the inequitable systems and work environments that exacerbate imposter syndrome are left unaddressed. In this case, Dr Smith has taken a measured approach to her dialogue with colleagues. She has allowed others to share their opinions while listening and then chooses to speak up, voicing both her perspective and another solution. Dr Doe does not address the potential merits or shortcomings of her comments and proposed solutions, instead he labels Dr Smith as emotional. Such labeling is harmful, gendered, and hinders

women and members of other minoritized groups from being their authentic selves and contributing their knowledge and experience in professional environments.

Dr Unaka, a Pediatric Hospitalist, Comments In this case, Dr Smith experienced a microaggression, one to which many women can relate. Gender microaggressions convey a variety of messages regarding characteristics, roles, and abilities that are rooted in gender bias and discrimination. However, the message conveyed by Dr Doe was directly linked to his perception of Dr Smith as a Black woman. Intersectionality, a concept coined by Professor Kimberle Crenshaw in 1989, is a framework for understanding how different social identities (race, gender, class, disability, sexual orientation etc) overlap and create different levels of advantage and/or disadvantage.8 This concept is central to understanding that the discrimination Black women experience does not stem from a single system of oppression. The experiences of Black women are different from those of White women or Black men. Black women are subject to both racism and sexism; these compounding systems of oppression can have a tremendous impact on Black women and others with multiple social identities. For example, Black women physicians may experience being mistaken for a nurse in one instance and a member of a hospital’s janitorial staff in another. Furthermore, Black women physicians receive less compensation and have less career advancement opportunities compared with their male and White female counterparts.9 Dr Smith’s encounter with Dr Doe reveals the differential experiences

of UIM physicians in professional settings where othering and exclusion are commonplace. More specifically, Black women physicians are constantly combating negative stereotypes and pervasive tropes. A common trope is that of the “angry Black woman,” one who is aggressive, easily provoked, hostile, irrational, loud, and ill-tempered. This mythical portrayal is harmful, and yet the pejorative stereotype can have a significant impact on the professional experiences and wellbeing of Black women. In fact, one study describes a phenomenon of racial fatigue, “the potential emotional and psychological sequelae of feeling isolated in a work environment in which race regularly influences behavior but is consistently ignored.”10 Out of pure necessity, Black women are generally accustomed to navigating professional environments acutely aware of the preconceived notions and biases of their colleagues. Like Dr Smith, Black women are forced to make calculated decisions about if, when, and how to share their perspectives and/or address conflict. Black women recognize what is at stake and are weary of public exchanges in which the risk of being typecast or vilified is high. The exchange between Dr Smith and Dr Jones is one that is all too familiar. Dr Smith’s White colleague was silent during the exchange. The encounter highlights how those who experience racism and other forms of discrimination are often left to fend for themselves in various situations and environments. Dr Jones’ inaction during the encounter warrants an examination of the role of allyship in cultivating inclusive environments. An ally is defined as an individual “who strive[s] to end oppression through supporting and advocating on behalf of the oppressed.”11 In this case, Dr Jones’ allyship could be viewed as

PEDIATRICS Volume 148, number 6, December 2021

3

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021052758/1353917/peds_2021052758.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

103

complicated. Although she is not Black, as a woman, her ability to function effectively as an ally might be limited. That said, passive allyship, characterized by commiseration and offering emotional support to marginalized individuals behind the scenes, is woefully insufficient when it comes to mitigating microaggressions in the workplace. Professional environments must foster inclusivity, an ideal state in which individuals are respected, empowered, and able to be their full and authentic selves. Inclusion is a dynamic process that can be promoted by enhancing institutional culture and climate as they relate to diversity, equity, and inclusion12,13; practices that threaten its existence must be identified and eliminated. Inclusive environments are borne via dismantling social structures that confer disadvantage to marginalized individuals. And inclusive environments are sustained by those who are active coconspirators; individuals who recognize their privilege or unearned advantage and, as a result, leverage their position of power to center those who would otherwise be excluded.

Dr Hackworth, an Educator, Comments It is common for bystanders to remain silent during and after a microaggression has taken place and approach the person who was on the receiving end of the microaggressive statement after the fact to either apologize for the offending colleague and/or apologize for not speaking up. Individuals can support of colleagues who experience microaggressions by being an upstander, a person who speaks or acts in support of an individual or cause, particularly someone who intervenes on behalf of a person

being attacked, bullied, or microaggressed.14 However, centering oneself and personal reasons for not intervening is unsupportive. Bystanders should keep in mind that addressing microaggressions does not have to be confrontational. Furthermore, intervention does not always have to occur in the moment. In fact, it is often more productive to request a one-on-one conversation shortly after the event. There are many ways in which Dr Jones could have taken the posture of an upstander and educated her colleague, Dr Doe. To mitigate her discomfort with speaking up during the meeting, she could have either stayed behind and spoken to Dr Doe after the meeting or reached out to him via e-mail to set up a separate time in the near future to discuss what occurred. In either case, it is important for her to follow-up with her colleague, Dr Smith, to let her know that she found the comments to be offensive and to inform of her intention to speak with Dr Doe. Affirmation and support are critical to making Dr Smith feel that she is not overreacting. This approach also removes the burden from Dr Smith, who may be contemplating engaging in a conversation with Dr Doe. If Dr Jones had a strong rapport with Dr Doe, she could say the following: I wanted to touch base with you about the comment that you made to Dr Smith during this morning’s meeting. John, I have known you for some time, and I know you would never deliberately say something to offend another person; however, it was very offensive to me when you interrupted Dr Smith as she was giving her perspective and told her “it would be best if you left your emotions out of the discussion.” Assuming that a woman is being overly emotional when she expresses disagreement

4

Many of the microaggressions that we witness result from a lack of awareness of the difference between intent and impact.15 When we intervene in situations such as the one presented above, we should engage with the mindset that this will be a continuous dialogue. The initial conversation serves as an icebreaker to let colleagues know that we are committed to their development and will approach difficult conversations with courage and compassion. Additionally, when we are on the receiving end of these conversations, we should accept feedback with grace and gratitude, understanding the significant amount of courage individuals must surmount to lean into these difficult conversations.

CASE 2 Dr Anaya Johnson, an intern, is rounding with her team, including attending physician Dr Robert Harvey. She identifies as Black and is the only person of color on the team. Dr Johnson enters her patient’s room first and starts to introduce herself. The White parent abruptly interrupts her and says, “I am really glad you are here to empty the trash can! It’s overflowing.” Dr Johnson is caught off guard but pulls herself together and continues with her introduction and presentation. Dr Harvey looks mortified but does not intervene or

HACKWORTH et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021052758/1353917/peds_2021052758.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

104

is problematic and hurtful. This is deeply connected to biases and stereotypes that we hold about women, in this case, a Black woman. Have you ever heard of the “angry Black woman” phenomenon? I would be happy to get coffee with you sometime to share my experiences as a female physician as well as some things I have learned from our Black female colleagues. I also have a few resources that I will send you ahead of our meeting to make for richer discussion as we learn together and hold one another accountable for being better!

PEDIATRIC COLLECTIONS

mention the incident to Dr Johnson afterward.

Dr Bignall, a Pediatric Nephrologist, Comments Health care workers are human beings and are not immune to the impact of biased or bigoted statements directed toward them. This is especially true for many UIM students, trainees, and colleagues who are often working to counter racialized stereotypes about their presence on the health care team. It is in this context that Dr Johnson finds herself and in which her patient’s parent exercised what could be described as a microaggression. Although perpetrators of racial microaggressions are often unaware that they are engaging in such communication patterns because they perceive themselves to be egalitarian, it is important to understand that when microaggressions target individuals on the basis of their race, the microaggressions are racist. Many times, this is the result of aversive racism, a form of racial prejudice held by individuals who outwardly endorse egalitarian beliefs and values but nonetheless hold prejudiced beliefs about members of certain racial groups.16,17

real-world consequences for Dr Johnson personally, for her clinical performance, and for her team’s dynamics. Experiencing racism on the job is deeply demoralizing. The impact on one’s psyche, sense of belonging, and mental health cannot be understated. But the impact does not lie with the target of racism alone. This racist microaggression can contribute to negative clinical performance because of Dr Johnson’s hyperawareness of “stereotype threat,” which acknowledges the increased anxiety that can result from excessive vigilance for how one’s behavior may reinforce racist stereotypes.18 Finally, it is likely that if Dr Johnson and her attending recognized the racist nature of this microaggression, other members of the care team did as well.

Dr Hackworth, an Educator, Comments

There are some who might suggest that the parent in this vignette meant no harm by assuming that Dr Johnson, the only person of color on the patient care team, was part of the hospital’s custodial staff and responsible for emptying the overflowing trash can. However, the response by Dr Johnson and her attending suggests a deeper understanding of the role of racist pretext in this assumption. It is unlikely that a nonminority resident team member would have faced the same assumption, and therefore this experience may lead Dr Johnson to conclude that she is not a properly respected member of the care team.

Sadly, assumptions about Black employees’ roles (including doctors, nurses, psychologists, other allied health professionals, and non–patientfacing staff) occur frequently in work environments. Most importantly, the microaggression is not an insult because of the position that the intern is being mistaken for holding because every colleague is a respected and valued member of the team. The issue lies in the underlying bias that is held about people of color, one that Sue et al19 coined “second class citizen,” or the idea that people of color are servants to White people and could not possibly occupy high-status positions, such as physician, psychologist, nurse, respiratory therapist, educator, etc. Although this common microaggression is hurtful in many ways, the most harmful aspect of this case is that no one redirected the parent as the situation unfolded or followed-up with Dr Johnson afterward to provide her with the support she likely needed.

The internalized feelings that result from racist microaggressions can have

Clinicians who find themselves in positions in which they need to

address patients’ or family members’ microaggressive statements directed toward other members of the care team often find it difficult to do so for several reasons. Clinicians are balancing (1) concerns regarding the impact their actions might have on the establishment and/or maintenance of the therapeutic relationship, (2) their institution’s espoused commitment to family-centered care, and (3) the negative impact speaking up may have on the clinician’s patient satisfaction scores. The one factor that is not always considered in situations such as this one is the impact that unaddressed microaggressions have on colleagues on the receiving end. The literature is replete with findings about the detrimental impact that racism, such as that displayed in this case, has on the physical and mental health of those who experience it, including increased risk of chronic stress, mental health conditions, hypertension, and poor sleep-wake behaviors.20–24 Colleagues of color are not only experiencing racial bias that manifests as microaggressions, as outlined in these cases, similar experiences occur regularly outside the workplace as well. Although thresholds exist for the level of disruption that will be accepted by people of color before they are labeled as angry, negative, or not a good fit, situations such as those outlined in the case accentuate the unfair burden that people of color carry by having to either stand up for themselves or accept them as societal and workplace norms. Although microaggressions alone are extremely erosive to one’s selfesteem, self-efficacy, and overall well-being,25 the compounding effect of colleagues not speaking up on behalf of the person experiencing the microaggression further exacerbates the many harms and detriments caused by these

PEDIATRICS Volume 148, number 6, December 2021

5

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021052758/1353917/peds_2021052758.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

105

experiences. Speaking up when one experiences or observes situations such as the one presented in this case presents several challenges that are important to consider. Speaking up may be prohibitive when a power differential exists or when there are real or perceived risks associated with addressing microaggressions. In this case, the intern may not have felt empowered to speak up not only because of her role as a trainee but also because of her racial and gender identity. The repercussions of interrupting bias are often amplified for people from minoritized groups simply because they are less likely to be afforded empathy or second chances in environments where racism, sexism, and bias exist, and yet although the risks and costs are greater, marginalized individuals are often left to address these issues alone because of the silence of bystanders. Thus, support for UIM trainees within graduate medical education programs is critical. Programs must create environments where trainees willingly escalate concerns to trusted mentors and/or graduate medical education leadership without hesitation or fear. In this case, Dr Harvey could have engaged in a private conversation with Dr Johnson to provide her with support, affirm that the comment was in fact microaggressive and upsetting to him, and apprise her of his plan to address it. He then could address the parent with or without Dr Johnson present on the basis of her preference. An alternative approach would be for Dr Harvey to address the parent regarding the microaggression in the moment as soon as it occurred. If he chose to address the microaggression in the moment, it is critical to follow-up with Dr Johnson afterward to provide her with support. Dr Harvey could start the conversation with the parent by saying the following:

I am sure you did not mean to offend my resident physician, Dr Johnson; however, when you interrupted her and said, “I am really glad you are here to empty the trash can,” that was very offensive. She has worked hard to become a doctor. Our hospital is deeply committed to diversity, equity, and inclusion and thus employs an extremely diverse workforce, so you can expect to see diversity across many different roles during your time with us. When you make assumptions that the Black person is here to empty the trash, you could be wrong and run the risk of offending the person. You could avoid that mistake in the future by checking out the person’s badge or allowing the person to introduce her or himself and let you know their role.

If Dr Harvey had the time and felt equipped to go deeper, he could have shared with the parent how comments like that are rooted in biases and stereotypes that we hold about certain groups and that we all need to work hard to not make assumptions like the one made in this case. If the parent responds in a defensive or aggressive manner, Dr Harvey could say the following: I know it can be hurtful to learn that you have offended someone, especially when you did not mean to. It can also make you feel embarrassed. Trust me, I have done the same thing many times before. I have learned that it is important to understand that just because I did not intend to hurt another person’s feelings with my words does not mean the impact of my words is not hurtful. There is so much that I do not know as a White person, so I have really committed myself to embracing my missteps as learning opportunities instead of being embarrassed or defensive when someone brings them to my attention. This is a learning journey, and we are all in this together!

There are many scenarios, including the ones presented in this article,

6

Dr Matheny Antommaria Comments Although White, male physicians may be unaware of them, microaggressions experienced by minoritized groups are prevalent in health care. They have substantial negative effects on members of minoritized groups and on health care organizations. Racism and bias that manifest as microaggressions adversely affect the self-efficacy, vitality, and sense of belonging of members of minoritized groups. Organizations also lose their engagement and the benefits of their knowledge. Expecting members of minoritized groups to speak up in response to microaggressions is unjust. They did not create these systems of oppression, are already disadvantaged by them, and face additional risks of speaking up. These disadvantages and risks are exacerbated while individuals are in training. Bystanders with relative privilege must understand these dynamics and address them. Remaining silent makes one complicit in the racism and/or sexism. Individuals must move beyond supporting the targets of microaggressions in private as bystanders to responding to the perpetrator, at times in public, as upstanders. Although this must be done with tact, it is essential to decrease microaggressions, promote inclusion, and uphold institutional commitments to diversity. This requires courage and entails risk but is the right thing to do.

HACKWORTH et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021052758/1353917/peds_2021052758.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

106

that mirror the experiences of our colleagues from minoritized groups. We must create environments and spaces where people feel safe sharing their experiences and can practice responding to microaggressions. Practice is a powerful way for individuals to build confidence as it relates to bias intervention.

PEDIATRIC COLLECTIONS

ABBREVIATION UIM: underrepresented in medicine

REFERENCES 1. Freeman L, Stewart H. Microaggressions in clinical medicine. Kennedy Inst Ethics J. 2018;28(4):411–449 2. Osseo-Asare A, Balasuriya L, Huot SJ, et al. Minority resident physicians’ views on the role of race/ethnicity in their training experiences in the workplace. JAMA Netw Open. 2018;1(5):e182723 3. Tiedens LZ. Anger and advancement versus sadness and subjugation: the effect of negative emotion expressions on social status conferral. J Pers Soc Psychol. 2001;80(1):86–94 4. Brescoll VL, Uhlmann EL. Can an angry woman get ahead? Status conferral, gender, and expression of emotion in the workplace. Psychol Sci. 2008;19(3):268–275 5. Clance PR, Imes SA. The imposter phenomenon in high achieving women: dynamics and therapeutic intervention. Psychotherapy (Chic). 1978;15(3):241–247 6. LaDonna KA, Ginsburg S, Watling C. “Rising to the level of your incompetence”: what physicians’ self-assessment of their performance reveals about the imposter syndrome in medicine. Acad Med. 2018;93(5):763–768 7. Corkindale G. Overcoming imposter syndrome. Harvard Business Review. May 7, 2008. Available at: https://hbr.org/2008/ 05/overcoming-imposter-syndrome. Accessed October 12, 2021 8. Crenshaw K. Demarginalizing the intersection of race and sex: a black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. Univ Chic Leg Forum. 1989;1989(1):8

9. Butkus R, Serchen J, Moyer DV, et al; Health and Public Policy Committee of the American College of Physicians. Achieving gender equity in physician compensation and career advancement: a position paper of the American College of Physicians. Ann Intern Med. 2018;168(10):721–723 10. Nunez-Smith M, Curry LA, Bigby J, Berg D, Krumholz HM, Bradley EH. Impact of race on the professional lives of physicians of African descent. Ann Intern Med. 2007;146(1):45–51 11. Salter NP, Migliaccio L. Allyship as a diversity and inclusion tool in the workplace. In: Georgiadou A, Gonzalez-Perez MA, Olivas-Lujan MR, eds. Diversity Within Diversity Management: Types of Diversity in Organizations. Bingley, United Kingdom: Emerald Publishing Limited; 2019:131–152 12. Piggott DA, Cariaga-Lo L. Promoting inclusion, diversity, access, and equity through enhanced institutional culture and climate. J Infect Dis. 2019;220(suppl 2):S74–S81 13. Mmeje O, Price EAN, Johnson TRB, Fenner DE. Galvanizing for the future: a bottomup departmental approach to diversity, equity, and inclusion. Am J Obstet Gynecol. 2020;223(5):715.e1–715.e7 14. Oxford English Dictionary Online. “upstander, n.” Available at: https:// onlinelibrary.wiley.com/doi/epdf/10.1002/ pmrj.12229. Accessed October 12, 2021 15. Overland MK, Zumsteg JM, Lindo EG, et al. Microaggressions in clinical training and practice. PM R. 2019;11(9):1004–1012 16. Dovidio JF, Gaertner SL, Kawakami K, Hodson G. Why can’t we just get along? Interpersonal biases and interracial distrust. Cultur Divers Ethnic Minor Psychol. 2002;8(2):88–102 17. Son Hing LS, Chung-Yan GA, Hamilton LK, Zanna MP. A two-dimensional model that employs explicit and implicit attitudes to

characterize prejudice. J Pers Soc Psychol. 2008;94(6):971–987 18. Reynolds KL, Cowden JD, Brosco JP, Lantos JD. When a family requests a white doctor. Pediatrics. 2015;136(2):381–386 19. Sue DW, Capodilupo CM, Torino GC, et al. Racial microaggressions in everyday life: implications for clinical practice. Am Psychol. 2007;62(4):271–286 20. Trent M, Dooley DG, Douge J; Section on Adolescent Health; Council on Community Pediatrics; Committee on Adolescence. The impact of racism on child and adolescent health. Pediatrics. 2019;144(2):e20191765 21. Brody GH, Lei MK, Chae DH, Yu T, Kogan SM, Beach SRH. Perceived discrimination among African American adolescents and allostatic load: a longitudinal analysis with buffering effects. Child Dev. 2014;85(3):989–1002 22. Grandner MA, Hale L, Jackson N, Patel NP, Gooneratne NS, Troxel WM. Perceived racial discrimination as an independent predictor of sleep disturbance and daytime fatigue. Behav Sleep Med. 2012;10(4):235–249 23. Brondolo E, Brady N, Thompson S, et al. Perceived racism and negative affect: analyses of trait and state measures of affect in a community sample. J Soc Clin Psychol. 2008;27(2):150–173 24. Beatty Moody DL, Waldstein SR, Tobin JN, Cassells A, Schwartz JC, Brondolo E. Lifetime racial/ethnic discrimination and ambulatory blood pressure: the moderating effect of age. Health Psychol. 2016;35(4):333–342 25. Martins TV, de Lima TJS, Santos WS. Effects of gendered racial microaggressions on the mental health of black women [in Portuguese and English]. Cien Saude Colet. 2020;25(7): 2793–2802

PEDIATRICS Volume 148, number 6, December 2021

7

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021052758/1353917/peds_2021052758.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

107

Should a Healthcare System Facilitate Should a Healthcare System Facilitate Racially Concordant Care Black Racially Concordant Care forfor Black Patients? Patients? a

a

a a Taylor, PhD, MDiv, MPH,Udeagbala, Osaze Udeagbala, MBA, Lauren A.Lauren Taylor, A.PhD, MDiv, MPH, Osaze MD, MBA,MD, b,d PhD,b,d Helen-Maria Lekas, c,e PhD,c,e Keisha fRay, PhDf Adam Biggs, Adam Biggs, PhD, Helen-Maria Lekas, PhD, Keisha Ray, PhD

abstract abstract

Addressing racial disparities in health outcomes is an urgent for many Addressing racial disparities in health outcomes is an urgent prioritypriority for many health care organizations, leading health care managers to explore the health care organizations, leading health care managers to explore the potential for organization-level interventions yield substantive potential for organization-level interventions to yieldtosubstantive health health gains. gains. In recent literature, it is suggested thatpatients Black patients who are treated by Black In recent literature, it is suggested that Black who are treated by Black physicians may achieve superior outcomes some settings. this case physicians may achieve superior health health outcomes in someinsettings. In this In case discussion, we consider a case in awhich a medical director considers discussion, we consider a case in which medical director considers implementing a voluntary program to promote concordant a implementing a voluntary program to promote raciallyracially concordant care forcare for aDepartment Department of Population Health, School Grossman of Population Health, Grossman of School of Black patients. Commentators consider the precedent fora such a program, Medicine, New York University, New York; York, New York; Black patients. Commentators consider the precedent for such program, both both Medicine, New York University, New York, New b b AfricanStudies American Studiesand Program and Department of African American Program Department of in current informal care networks andcentury 20th century in current informal care networks and 20th medicalmedical history,history, as wellas aswell as History, of University of SouthLancaster, Carolina Lancaster, History, University SouthcCarolina Lancaster, Lancaster, the burden a program mayon place onphysicians Black physicians theofrisks of South Carolina; SouthcDepartment Carolina; Department of Psychiatry, NYU Grossman the burden such a such program may place Black and theand risks of Psychiatry, NYU Grossman School ofNew Medicine, New York; York, dNew York; dDepartment of reducing patients’ intersectional identities to be solely about race. A subset of School of Medicine, York, New Department of reducing patients’ intersectional identities to be solely about race. A subset of History ofJohns Medicine, Johns Hopkins School of Medicine, the Historythe of Medicine, Hopkins School of Medicine, e commentators suggest that these risks are mitigated by the voluntary nature of commentators suggest that these risks are mitigated by the voluntary nature of Baltimore, Baltimore, Nathan S. Kline Maryland; eMaryland; Nathan S. Kline Institute forInstitute for Research, Orangeburg, New York; and the program, whereas offer caution about relying solely on Black PsychiatricPsychiatric Research, Orangeburg, New York; and the program, whereas others others offer caution about relying solely on Black f f McGovern Center for Humanities Ethics, McGovern McGovern Center for Humanities and Ethics,and McGovern physicians to remedy disparities. view multiple paths as morally physicians to remedy health health disparities. OthersOthers view multiple paths as morally Medical School, of University of Texas Health Science Center Medical School, University Texas Health Science Center defensible but emphasize thefor need for managers take proactive Houston,Texas Houston, Texas defensible but emphasize the need managers to taketo proactive steps tosteps to at Houston,atHouston, communicate and evaluate their choices in the a complex communicate and evaluate their choices in the face of face suchofa such complex social social Drs Taylor Drs and Udeagbala conceptualized and Taylor Udeagbala conceptualized the article,the article, solicited the participation of other commentators, challenge. solicited the participation of other commentators, challenge. drafted their commentaries, and and reviewed drafted their commentaries, and reviewed revisedand revised the full manuscript; Lekas, and Ray drafted the full manuscript; Drs Lekas, Drs Biggs, andBiggs, Ray drafted their commentaries and and reviewed their commentaries and reviewed revisedand therevised full the full manuscript; and allapproved authors the approved manuscript; and all authors final the final manuscript as submitted to be accountable as submitted and agree and to beagree accountable of manuscript for allof aspects for all aspects the workof the work

Reducing racial disparities in healthWhat implications What implications does Reducing racial disparities in health does this linethis of line outcomes is an urgent priority for research have for developing an outcomes is an urgent priority for research have for developing an DOI: https://doi.org/10.1542/peds.2021-051113 DOI: https://doi.org/10.1542/peds.2021-051113 many health care organizations, organizational approach to reducing many health care organizations, organizational approach to reducing Accepted for publication Accepted for publication Jul 28, 2021Jul 28, 2021 to a continual for racial disparities? racial disparities? Dostudies these studies leadingleading to a continual search search for Do these Address correspondence LaurenDepartment A. Taylor, Department Address correspondence to Lauren A.toTaylor, novel organization-level underscore thetoneed to of Population Health, School Grossman School ofNew Medicine, New novel organization-level merelymerely underscore the need of Population Health, Grossman of Medicine, York University, 227New E 30th St, NY New York,E-mail: NY 10016. E-mail: York University, 227 E 30th St, York, 10016. interventions can yield improve the diversity interventions that canthat yield improve the diversity of the of the [email protected] substantive healthfor gains for Black physician physician workforce, or are more [email protected] substantive health gains Black workforce, or are more (ISSN Numbers: Print, 0031-4005; PEDIATRICSPEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, Online, patients, in particular. proactive and, perhaps, patients, in particular. proactive and, perhaps, 1098-4275).1098-4275). uncomfortable steps warranted to Copyright ©Copyright © 2021 by theAcademy AmericanofAcademy of Pediatrics uncomfortable steps warranted to 2021 by the American Pediatrics One emerging of research improve the outcomes health outcomes of FINANCIALFINANCIAL One emerging line of line research DISCLOSURE: The authors have improve the health of DISCLOSURE: The authors have indicated indicated theyfinancial have norelationships financial relationships to this thatpatients Black patients by racial minorities? How such might such they have no relevant torelevant this revealsreveals that Black treatedtreated by racial minorities? How might article to disclose. article to disclose. Black physicians achieve better be understood in the context Black physicians achieve better efforts efforts be understood in the context external funding. health outcomes in several domains,of the historical FUNDING: FUNDING: No externalNofunding. of the historical effort to desegregate health outcomes in several domains, effort to desegregate CONFLICT OF INTEREST: Thehave authors have compared with Black patients American medicine? POTENTIALPOTENTIAL CONFLICT OF INTEREST: The authors compared with that of that Blackofpatients American medicine? indicated theypotential have noconflicts potentialofconflicts indicated they have no interestoftointerest to by non-Black physicians. seen byseen non-Black physicians. Recent Recent disclose. disclose. 50% reduction in In this In this month’s Ethics Rounds, we studiesstudies reveal areveal 50% areduction in month’s Ethics Rounds, we 1 Black–white infant mortality consider an organizational Black–white infant mortality gaps1 gaps consider an organizational ethics ethics To cite: Taylor LA, Udeagbala BiggsH-M, A, Lekas H-M, LA, Udeagbala O, Biggs A,O,Lekas and a 19% decline in male issue: should a health care system To cite: Taylor and a 19% decline in male issue: should a health care system et al. Should a Healthcare SystemRacially Facilitate Racially et al. Should a Healthcare System Facilitate cardiovascular mortality with racially implement a system to facilitate cardiovascular mortality with racially implement a system to facilitate Concordant CarePatients?. for Black Patients?. Concordant Care for Black Pediatrics.Pediatrics. 2 concordant concordant 2021;148(4):e2021051113 concordant care.2 care. raciallyracially concordant care? care? 2021;148(4):e2021051113

Volume 148, 4,number October 2021:e2021051113 PEDIATRICSPEDIATRICS Volume 148, number October4,2021:e2021051113

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/4/e2021051113/1197855/peds_2021051113.pdf ded from http://publications.aap.org/pediatrics/article-pdf/148/4/e2021051113/1197855/peds_2021051113.pdf by Academy Americanof Academy of Pediatrics, William Larkin can Pediatrics, William Larkin on 26 August 2022 gust 2022

108

PEDIATRIC COLLECTIONS

ROUNDS ETHICSETHICS ROUNDS

Commentators include a bioethicist, a sociologist, a historian, and a pair of health management scholars. They consider the potential benefits and detriments as well as potential unintended consequences for such a system.

THE CASE Dr Pollock is the Chief Medical Officer of Just Healthcare, a health care delivery organization that holds financial risk for roughly 20 000 patients. She is committed to using organizational policy to pursue health equity. Dr Pollock has reviewed the literature on racial concordance and is considering rolling out a new program to facilitate a match between the organization’s Black physicians and Black patients. Dr Pollock believes the racial concordance literature is strongest with respect to Black-patient outcomes, and the moral urgency to improve Black–white disparities justifies an initial focus on this patient population. Dr Pollock recognizes that Black patients have commonly sought out racially concordant care through informal referral networks and hopes that a program like this would lessen the required legwork for those who opt in. The key characteristics of this program are as follows: 1.

2.

3.

The program would rely on racial self identification, meaning that both physicians and patients or parents would be asked to indicate their own racial identification according to US Census categories. The program would be opt in for both physicians and patients or parents. The program would begin in an outpatient setting.

Several members of Dr Pollock’s senior team have expressed enthusiasm for this idea. They see it as merely formalizing the widespread practice of seeking out concordant care. Others have raised substantive concerns, including the optics of ushering in a return to segregated medicine. Dr Pollock consults the ethics team for further counsel.

KEISHA RAY, A BIOETHICIST, COMMENTS This case represents a policy solution to the ongoing problem of Black people receiving inferior, racially biased health care. This problem is created by systemic racism embedded in health care (in particular, providers’ racial biases), rather than a problem inherent in the Black population. This is evidenced by the fact that, when we correct for factors such as income, Black individuals still have lesser health outcomes than white people do. For example, infant mortality is 3 times higher for the infants of Black women with advanced degrees than for those of white women with a high school diploma or GED.3 This indicates that even when Black people have access to vital social determinants of health, other external factors also determine their health outcomes, and, because we have no reason to believe that physicians are any less racially biased than the general public, we must examine the role providers’ racial biases play in Black patients’ poor health outcomes. Because the problem is at the institutional level, rather than problems inherent to being Black, the solutions must also be at the institutional level, and this is almost always manifested as policy implementation. Black people already engage in racially concordant care or “racematching” to ensure proper care for

2

themselves and their children in response to formal and informal knowledge about racism in health care. Racially concordant care is also informally practiced in some clinical settings in which patients and physicians of the same presumed race are matched. A program that formally facilitates this approach to care, however, would help drive solutions to racial disparities in health in a more organized and efficient manner within its organizations. Although some of the concerns about this racially concordant care policy are worthy of our considerations, we can properly address them while upholding the merits of the policy. First, the concern that this policy puts an undue burden on Black physicians is a warranted concern. Black physicians participating in the program would likely still be expected to care for their normal patients, including Black patients who would like a Black physician. Yet, there are simply not enough Black physicians to satisfy every Black patient who would like to be cared by one without overworking Black physicians and without forcing them to only see Black patients. The concerns are especially valid given that Black physicians themselves must overcome racism from coworkers and patients, challenges to their credentials and qualifications, and other burdens that their white coworkers do not have to think about. We must protect Black physicians while also doing our best to provide quality care to Black patients. One way to do this is to enforce the policy’s optin feature. If racially concordant care is done on a volunteer basis, then physicians have the freedom to opt in when they can and opt out when they feel overwhelmed. Black patients too have the freedom to participate at their will. For the optin feature to work, however,

TAYLOR et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/4/e2021051113/1197855/peds_2021051113.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

109

organizations must create an environment in which Black physicians feel safe and free from judgement and punishment should they opt out. This feature of the policy may create longer wait times for patients to see a Black physicians; however, given the research that supports better health outcomes for Black patients if they are cared for by Black physicians, longer wait times may be a small price to pay for the care, comfort, and assurance Black physicians can provide Black patients because their medical condition is presumably not an emergency, and, because this policy will be implemented in an outpatient setting and not in an emergency setting, we can allow Black patients the autonomy to determine when waiting for a Black physician is appropriate and when seeing any available physician is best. Implementing this policy while also educating and training nonBlack physicians to better care for Black patients removes the force of this concern. Secondly, the concern that racially concordant care is a reification of race-based medicine is unwarranted. Racially concordant care is not what we know race-based medicine to be. Race-based medicine typically refers to using a patient’s race as a guide for how to treat them. For example, race-based medicine can normally be seen in the diagnostic or care recommendation phase of care, such as when a physician uses an adolescent patient’s Black race to determine appropriate asthma interventions. What makes racebased medicine problematic is that it gives physicians an excuse to circumvent proper and thorough care; it allows them to rely on shallow and unscientific explanations of race, such as skin color indicating race and the conscious and unconscious biases they associate with Black people.

Instead, this policy uses people’s self-identified race to better treat Black patients. It removes physicians whose racial biases may lead to inferior care from treating Black patients and encourages Black physicians, who may be less inclined to mistreat Black patients, to treat Black patients. So, the concern that this policy is race-based medicine is correct in that it relies on race, but it is not in the same category as traditional race-based medicine as we know it. I recommend that Dr Pollock’s policy be implemented alongside other long-term solutions to racial disparities in health care. This approach can provide Black patients with a better experience of health care and better health outcomes and begins to repair the damaged relationship between Black individuals and health care by proving health care to be worthy of Black people’s trust.

HELEN-MARIA LEKAS, A SOCIOLOGIST, COMMENTS This case highlights the persistent health inequities that manifest on the individual, interpersonal, institutional, and societal levels. Although not unequivocally, the literature suggests that racial concordance between patients and physicians is associated with positive health and health care use outcomes, especially for Black patients. Hence, implementing an opt-in clinic program matching Black physicians with Black patients appears uncontroversial and an effective organizational strategy to reduce health inequities. However, this strategy also entails risks worth considering. I use the 3 constructs, habitus, intersectionality, and institutional agency, to discuss the program’s risks. Habitus is used to refer to the dispositions or tendencies

PEDIATRICS Volume 148, number 4, October 2021 Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/4/e2021051113/1197855/peds_2021051113.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

110

PEDIATRIC COLLECTIONS

individuals develop through socialization and experience. These tendencies are expressed in our perceptions and evaluations of the world around us and underlie our behavior.4 Our dispositions to act in particular ways are fostered at the intersection of social structure and individual choices. Race, gender, social class, age, and sexual orientation largely determine our place in the social structure and the opportunities we are afforded and/ or the barriers we confront. Opportunities and/or barriers interface with our choices to shape our habitus. Habitus sponsors our behavior that over time and with repetition becomes the patients’ health lifestyle and the physicians’ workstyle. Therefore, we can conceptualize the patient–physician relationship as the interface between the patient and the physician’s habitus and behavior. Socialized in a racist society that limits opportunities and generates barriers, Black patients and Black physicians share, to an extent, similar habitus and behavior. This shared habitus probably contributes to a patient-centered relationship and Black patients’ positive health outcomes. The Black patients and physicians’ shared habitus will also increase the likelihood that physicians and patients will opt in the proposed program. This idea of an a priori shared habitus, however, raises some individual and interpersonal risks. Considering Black race the sole social determinant of patients’ and physicians’ habitus and behavior is an oversimplification of Black lives that disregards the role of gender, social class, age, and sexual orientation that also contribute to habitus and behavior. Black patients who inhabit other identities (such as being female gender, being poor, and/or being a lesbian, gay, bisexual, transgender and/or queer

3

person) and have experienced sexism, classism and/or heteronormativity in the health care system might be alienated by the proposed program. The choice of a racially concordant physician might be insufficient, if not disrespectful because it erases their other key identities. With intersectionality, we recognize that a person’s habitus and behavior are shaped by their place at the intersection of multiple, interlocking social hierarchies that rank individuals according to the gender, social class, age, sexual orientation, and race.5 A Black lesbian woman, for instance, is at risk for being exposed to sexism, heteronormativity, and racism in the health care system. We must adopt an intersectional approach to understand whether she experiences the proposed program as a meaningful expansion of her choice and autonomy. Black physicians’ intersecting identities also shape their habitus and behavior toward their patients. The program’s sole focus on physicians’ Black race assumes a shared habitus and disregards potential differences between Black physicians and patients (ie, social class) that can threaten the therapeutic relationship. Because these relationships unfold in the clinic, we should consider how clinic practices impact patient–provider relationships using the construct of institutional agency. By “institutional agency,” we refer to the discretionary power of institutions to differentially impact social groups through not only overt policies, regulations but, also, unwritten routine practices.6 Whereas Black patients have experienced the racist agency of the health care system, Black physicians have experienced the implicit racism that underlies the institutional agency of medical schools and the health care system and manifests in

unwritten institutional practices and criteria of professional evaluation and advancement. The proposed program is a manifestation of the clinic’s institutional agency that can generate moral and professional dilemmas for Black physicians who are acutely aware of the deleterious effects of racism for themselves and their patients. This awareness will generate a moral and professional pressure to opt in the program, despite any reservations that it reifies race as a health and health care category, resegregates medicine, and silos Black physicians. Aware of implicit racism, Black physicians will also be concerned that opting out will be deemed a professional deficit by the institution and their colleagues, despite the program’s appearance as voluntary. Therefore, most Black physicians will opt in the program and endeavor to provide patientcentered care to a heavy and vulnerable patient load, given the scarcity of Black colleagues and the well-justified distrust of health care among Black patients that has been linked to not accessing health care or adhering to treatment, all outcomes of historical racism.7 Assigning the task of rectifying our racist, sexist, classist, and heteronormative health care system solely to Black physicians is unfair. The clinic’s prioritization of racial matching is based on the subtext that race is the sole determinant of health and health care. This message obscures the fact that race is a social construction, promotes the reification of race, and reproduces the existing racial hierarchy. Lastly, given the aforementioned pressures to opt in the matching program, Black physicians’ own voices on how to improve the quality of care for their Black patients are silenced. My recommendation to Dr Pollock would be to elicit the Black physicians and patients’ voices on

4

how best to provide patientcentered care, instead of imposing another institutionally driven program.

ADAM BIGGS, AN HISTORIAN, COMMENTS Debates over the benefits and pitfalls of concordant care have a meaningful place in Black American history and the history of medicine. Throughout the 20th century, Black communities looked to Black doctors as hopeful signs of racial achievement and expanding civic inclusion. Although symbolically meaningful, however, the specters of Jim Crow discrimination and racial inequity often accompany visions of concordant care and raise doubts about the ability of Black physicians to overcome the structural barriers that generate disparities. In my research on Harlem Hospital in the early 1920s, the demand for concordant care appears as one of the mobilizing forces behind efforts to promote desegregation. As Harlem’s growing Black population gained political influence, Black civic activists called attention to the lack of Black doctors on the hospital’s staff and justified their call for desegregation by pointing to several incidents of Black patients suffering from mistreatment at the hands of white physicians. Stories of expectant mothers and young children exposed to unsanitary conditions, neglectful staff, or improper care fueled desires to incorporate Black doctors into the hospital. Harlem Hospital’s administration yielded slowly but agreed to gradually integrate Black practitioners onto its staff. A handful of Black doctors received appointments to the outpatient department before several were promoted to provisional positions on the in-house staff in 1923.

TAYLOR et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/4/e2021051113/1197855/peds_2021051113.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

111

Steadily, Black practitioners gained access to internships, residencies, and more permanent positions. The slow pace of desegregation, however, caused political pressure to build and, in 1929, led Mayor James Walker to orchestrate a massive overhaul of the municipal hospital administration. His reforms resulted in several new hires and, by 1930, Black doctors composed 40% of the hospital’s medical staff, including heads of department and membership on the administrative board.8 Concordant care, however, was not a miracle cure for Black Harlem’s health concerns. Even with Black practitioners staffed throughout the facility, larger systemic issues had a determinant impact on patient care. Competing social justice goals split Harlem’s Black medical community into opposing factions. Some maintained the hospital should develop into an integrated research center dedicated to advancing medical science pertinent to Black Americans. Others argued it should focus on the training of Black medical personnel.9 As tempers flared, bitter rivalries formed, creating a toxic environment. Local and national organizations, like the Abyssinian Baptist Church, National Association for the Advancement of Colored People, and National Medical Association, joined the fray, escalating tensions. Combined with structural inadequacies like overcrowding and limited resources, morale at the hospital suffered and practitioners struggled to provide patients with adequate care. Unfavorable press reports detailed a slew of misdiagnoses, patient disregard, and one of the highest death rates among New York City hospitals.10

In 1935, tensions in Harlem came to a head, when a riot broke out. Although not the principal cause, investigators determined poor conditions and discord at the hospital were aggravating factors. Mayor Fiorello La Guardia took steps to quell the unrest, but many Black Harlemites had already lost confidence in Harlem Hospital and were questioning the benefits of concordant care. Aubre Maynard, one of the first Black doctors to serve as a resident, recalled how public distrust continued to torment the facility. “Most Negroes in the community,” he explained, “were outspoken about racial pride” but still tended to be “critical or … deprecatory of [the hospital’s] services and its professional personnel.” In more than one instance, he recalled Black patients questioning his professional expertise. “You’re just another nigger,” one told him, “just like me. Ain’t no way you can know as much as the white man. I want me a white doctor.”11 Even in the years after La Guardia’s reforms, concerns about the treatment of expectant mothers and reports of high infant mortalities continued to plague the hospital. Concordant care may have noteworthy benefits for Black patients, but, in implementing her policy, Dr Pollock should be cognizant of how larger structural forces may impact its success. Attitudes about concordant care are rarely stagnant and reforms do not occur in a clinical vacuum. Communicating her program’s goals and rationale (through a media campaign, for example) could prove an effective tool in building and maintaining public trust and the support of her colleagues. If she is sensitive to demographic shifts, changing political climates, tensions within the medical profession, socioeconomic inequities, competing social justice goals, and evolving

PEDIATRICS Volume 148, number 4, October 2021 Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/4/e2021051113/1197855/peds_2021051113.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

112

PEDIATRIC COLLECTIONS

public opinion, she will be better positioned to respond to emergent developments and mitigate their impact on her work, when they appear. Recognizing that societal factors are constituent, rather than peripheral, elements of medical practice, Pollock’s vigilance will allow her to better address the needs of Black patients and reduce the likelihood of inadvertently reifying the racial disparities she seeks to eradicate.

OSAZE UDEAGBALA AND LAUREN TAYLOR, HEALTH MANAGEMENT SCHOLARS, COMMENT We find this case compelling because it focuses attention on a question about which we, as authors, remain uncertain. Namely, what, if any, information can justifiably be assumed about a person on the basis of their race? The studies of racial concordance that Dr Pollock references appear to indicate that Black patients and physicians take important information from the race of their counterparts in a therapeutic relationship. It is not immediately clear what information is being exchanged, but authors have hypothesized that it relates to the physician’s trustworthiness, relatability, and predisposition to openly listen to patient concerns, among other factors. Implicit in these findings is a belief on the part of patients that physicians who “look like me” will provide better, more compassionate care. The studies in question reveal an empirical reality about the value of racial concordance in doctor–patient relationships, but Dr Pollock faces a normative question of whether she should actively facilitate such concordance. Dr Pollock’s dilemma stems, in part, from an inherent tension in evidence-based management: things that can be statistically known about

5

study samples can only render probabilistic judgements about realworld individuals. In other words, even if Dr Pollock can feel confident on the basis of the literature that her Black-patient population will, on average, achieve better outcomes when paired with Black physicians, she must remain humble about what she can know about any specific patient, physician, or pair. Dr Pollock cannot know for sure that a particular Black physician will deliver relatively superior care for a Black patient. Is it defensible to proceed in light of the risk that an individual patient will not benefit from being matched with a racially concordant provider? Conceivably, a patient could even be harmed by receiving care from a racially concordant provider if either party carries internalized racist beliefs. Analogous uses of probabilistic reasoning in medicine have met with a range of receptions. On one hand, medical professionals routinely use medications that they know will create adverse effects in some small number of patients because they are, on the whole, helpful. On the other, physicians who rely on information about a patient’s race to make probabilistic judgements about a diagnosis have been roundly criticized, as Dr Ray points out in her commentary. If the matching program were to benefit all participating patients or even participating patients on average, Dr Pollock may still reasonably harbor ethical concerns. Establishing a matching program risks reifying an assumption that matched Black people will share certain innate understandings of one another, be it of socioeconomic status, language, preferences for clinical care, and so on. Perhaps it would be the case that a Black patient and Black physician who are matched according to Dr Pollock’s

proposal attend the same local church or spend time in the same social circles (and perhaps these elements of shared experience can be used to facilitate a therapeutic relationship) but for management to send the signal that these types of shared experiences can be reliably anticipated ex ante is misguided. It is more likely that the only generalization that can hold true about Black people in a clinical setting is that they share an experience of navigating institutional environments that privilege whiteness. But even if Dr Pollock were to determine that matching is justified based solely on this aspect of shared experience, the appearance of such program would be indistinguishable from a program premised on the belief that there are other substantive inferences to be made from a person’s race. Thus, even a matching program that is based on careful thinking can appear to erase the internal diversity of Black people and set back the project of defanging the racialized imaginary. Facilitating racial concordance may be a managerially expedient means of addressing certain racial disparities, but Just Healthcare would be poorly served by a program that appeared to suggest that likeness between patients and physicians is necessary for understanding and good care. Firsthand experience of a patient’s circumstance is but one way for a physician to achieve understanding. Physicians can be trained to listen and be responsive to those who are radically different from them. Developing these skills should be part of Just Healthcare’s longer-term efforts to improve the health outcomes of Black patients, as should the training and hiring of far larger numbers of physicians of color.

6

Reasonable people may disagree about the seriousness of the concerns we have raised. Some may view them as substantial, whereas others may suggest that a matching program would only slightly exacerbate problematic assumptions about race that are already pervasive. Similarly, reasonable people may disagree about the size of the potential health benefits that could be achieved when the kind of matching studied in the literature is scaled up within Just Healthcare. The complexity of the issues at hand and the uncertainty of social change means Dr Pollock can likely reach more than one decision with integrity and will, nonetheless, be vulnerable to thoughtful critiques. This being the case, the process by which the decision is communicated and implemented may be even more important than the content of the decision. We suggest that Dr Pollock engage with this complexity directly and transparently. Objections will be inevitable, but she can earn herself and the organization credibility by relaying the rationale by which she reached a decision.

OUTCOME After consultation, the ethics team proposed piloting the program, with a predetermined time line for review and conditions for ending the pilot. The team stressed the importance of including Black physicians in deciding how the program is implemented and considering outcome metrics, including but not limited to Blackpatient wait times and Blackphysician pay. It also suggested that evaluation be undertaken from the outset to identify the mechanisms by which racially concordant care creates benefit. The team added that close communication with participating physicians and patients would be essential to avoid

TAYLOR et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/4/e2021051113/1197855/peds_2021051113.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

113

misperceptions about the intent and assumptions of the program.

ARMAND H. MATHENY ANTOMMARIA, SECTION EDITOR, COMMENTS Healthcare organizations are struggling to reduce racial disparities in health outcomes. Researchers suggesting racially concordant care produces better outcomes for Black patients suggest 1 potentially attractive intervention. The commentators helpfully identify several potential risks of facilitating racially concordant care, including imposing undue burdens on Black health care providers and focusing inordinately on 1 aspect of individuals’ identity. The commentators also identify several conditions that should be present, if such programs are implemented, including involving Black patients and physicians in developing and implementing programs, evaluating programs regularly, implementing a larger bundle of interventions to reduce disparities, and attending to the larger structural forces that may affect the programs’ success. In identifying these issues and making these recommendations, the commentators reinforce the importance of organizational ethics and the value of multidisciplinary perspectives.

ACKNOWLEDGMENTS We acknowledge the Harvard Medical School Center for Bioethics for initially hosting a robust discussion of this case and the underlying questions in its Organizational Ethics Consortium. We extend special thanks to Kelsey Berry, Charlotte Harrison, and Jim Sabin for their leadership. REFERENCES 1. Greenwood BN, Hardeman RR, Huang L, Sojourner A. Physician-patient racial concordance and disparities in birthing mortality for newborns. Proc Natl Acad Sci USA. 2020;117(35):21194–21200 2. Alsan M, Garrick O, Graziani G. Does diversity matter for health? Experimental evidence from Oakland. Am Econ Rev. 2019;109(12):4071–4111 3. Smith I, Bentley-Edwards K, El-Amin S, Darity W. Fighting at Birth: Eradicating the Black-White Infant Mortality Gap Report. Durham, NC: Samuel DuBois Cook Center on Social Equality; 2018 4. Bordieu P. Outline of a Theory of Practice. Cambridge, UK: Cambridge University Press; 1977. Available at: https://www. cambridge.org/core/books/ outline-of-a-theory-of-practice/ 193A11572779B478F5BAA3E3028827D8. Accessed March 3, 2021 5. Crenshaw K. Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory, and Antiracist Politics.

PEDIATRICS Volume 148, number 4, October 2021 Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/4/e2021051113/1197855/peds_2021051113.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

114

PEDIATRIC COLLECTIONS

London, UK: Taylor and Francis; 2018. Available at: https://chicagounbound. uchicago.edu/cgi/viewcontent.cgi?article= 1052&context=uclf. Accessed March 3, 2021 6. Spencer KL, Grace M. Social foundations of health care inequality and treatment bias. Annu Rev Sociol. 2016;42(1):101–120 7. Cuevas AG, O’Brien K, Saha S. African American experiences in healthcare: “I always feel like I’m getting skipped over”. Health Psychol. 2016;35(9):987–995 8. Biggs A. The Newest Negroes: Black Doctors and the Desegregation of Harlem Hospital, 1919-1935. [Doctoral Dissertation] Cambridge MA: Harvard University: 2021 9. Gamble VN. Making a Place for Ourselves: The Black Hospital Movement, 1920-1945. New York, NY: Oxford University Press; 1995. Available at: https:// oxford.universitypressscholarship.com/ view/10.1093/acprof:oso/ 9780195078893.001.0001/acprof9780195078893. Accessed March 3, 2021 10. Wilson JJ. Building a Healthy Black Harlem: Health Politics in Harlem, New York, from the Jazz Age to the Great Depression. Amherst, NY: Cambria Press; 2009 11. Maynard AdL. Surgeons to the Poor: The Harlem Hospital Story. New York, NY: Appleton-Century-Crofts; 1978. Available at: https://books.google.com/ books/about/Surgeons_to_the_Poor. html?id=6O6EAAAAIAAJ. Accessed March 3, 2021

7

Assessing Visitor Policy Exemption Assessing Visitor Policy Exemption Requests During thethe COVID-19 Requests During COVID-19 Pandemic Pandemic a, Elizabeth Elizabeth Lanphier,Lanphier, PhD, MS,a,b, * Luke Mosley, MTS,MD, * Armand Matheny Antommaria, MD, PhDabMD, PhDab PhD, MS,a,b, * LukeMD, Mosley, MTS,a,* H. Armand H. Matheny Antommaria,

DuringDuring the coronavirus diseasedisease 2019 (COVID-19) pandemic, many hospitals the coronavirus 2019 (COVID-19) pandemic, many hospitals have added visitor visitor restrictions to theirtoroutine visitor visitor have COVID-19–specific added COVID-19–specific restrictions their routine restrictions. These additional visitor visitor restrictions are designed to reduce viral viral restrictions. These additional restrictions are designed to reduce transmission, protectprotect patients and staff, conserve personal protective transmission, patients andand staff, and conserve personal protective equipment. They typically exemptexempt patients with disabilities and those are equipment. They typically patients with disabilities andwho those who are dying. Consistent application of theseofpolicies may, however, be inequitable. dying. Consistent application these policies may, however, be inequitable. We present the case ofcase a single seekingseeking an individual exemption to We present the of a mother single mother an individual exemption to both a both routine and a COVID-19 specificspecific visitor visitor restriction. One commentator a routine and a COVID-19 restriction. One commentator focusesfocuses on the on importance of clearofand transparent processes for considering the importance clear and transparent processes for considering requests for exceptions. The other that disproportionate burdens may may requests for exceptions. Theargues other argues that disproportionate burdens be mitigated in otherinways theand policy be mitigated otherand ways the maintained. policy maintained.

abstract abstract

a

CincinnatiaChildren’ s Hospital Center, Cincinnati, Cincinnati Children’Medical s Hospital Medical Center, Cincinnati,

Ohio; and bDepartment of Pediatrics, College of Medicine, Ohio; and bDepartment of Pediatrics, College of Medicine, The coronavirus diseasedisease 2019 2019 both a both routine and a COVID-19 The coronavirus a routine and a COVID-19 University of Cincinnati, Ohio University of Cincinnati, Cincinnati, Ohio visitor visitor restriction is inequitable and and (COVID-19) pandemic raises raises restriction is inequitable (COVID-19) pandemic ask when or unique unprecedented challenges for health askindividual when individual or unique unprecedented challenges for health *Contributed equally as co-first *Contributed equally authors. as co-first authors. should should be made. care systems and society at large.at large. exceptions exceptions be made. care systems and society Dr Mosley Dr drafted thedrafted introduction, case summary, Mosley the introduction, case and summary, and Although vaccinevaccine roll outroll is now Although out is now his own comments; Dr LanphierDrdrafted thedrafted case the case his own comments; Lanphier conclusionconclusion and her own Dr Antommaria andcomments; her own comments; Dr Antommaria ongoing, prevention throughthrough public publicTHE CASE ongoing, prevention THE CASE proposed the case and own comments; proposed the provided case andhis provided his own comments; health measures focusedfocused on health measures on therevised work critically important and allrevised authors the workfor critically for important A 5-year-old girl is tracheostomy A 5-year-old girl is tracheostomy and all authors intellectualintellectual content, approved final manuscript as content, the approved the final manuscript as reduction of transmission, such assuch as dependent reduction of transmission, with medical historyhistory submitted, submitted, dependent with medical and agree and to beagree held to accountable for all be held accountable for all masking, hand-washing, and physical aspects of the work. masking, hand-washing, and physical aspects of the work. significant for prematurity of 30 of 30 significant for prematurity distancing, remainsremains paramount. Many Many distancing, paramount. DOI: https://doi.org/10.1542/peds.2021-051254 DOI: https://doi.org/10.1542/peds.2021-051254 weeks’ weeks’ gestational age, severe gestational age, severe health care facilities have have health care facilities publication May 5, 2021May 5, 2021 for publication bronchopulmonary dysplasia, grade gradeAccepted forAccepted bronchopulmonary dysplasia, substantially augmented existingexisting III intraventricular substantially augmented to ElizabethtoLanphier, hemorrhage, Address correspondence ElizabethEthics Lanphier, Ethics III intraventricular hemorrhage, Address correspondence Center, Cincinnati s Hospital Center, 3333Center, 3333 Center, Children’ Cincinnati Children’Medical s Hospital Medical visitation restrictions. These stricter visitation restrictions. These stricterspastic spastic cerebralcerebral palsy, epilepsy, palsy, epilepsy, Burnet Ave Burnet MLC 15006, Cincinnati, OH 45229, E-mail: Ave MLC 15006, Cincinnati, OH 45229, E-mail: restrictions are justified to limitto limit gastrostomy restrictions are justified [email protected] [email protected] tube dependence, and and gastrostomy tube dependence, unnecessary contact,contact, protectprotect patientspatients unnecessary PEDIATRICSPEDIATRICS (ISSN Numbers: 0031-4005; Online, Online, (ISSN Print, Numbers: Print, 0031-4005; developmental delay. She wasShe was developmental delay. 1098-4275).1098-4275). and staff, reduce personal andand staff, and reduce personal formerly ventilator dependent formerly ventilator dependent Copyright ©Copyright 2021 by the American Pediatrics © 2021 by theAcademy AmericanofAcademy of Pediatrics protective equipment consumption. protective equipment consumption.continuously but hasbut weaned to onlyto only continuously has weaned FINANCIAL DISCLOSURE: The authors have indicated FINANCIAL DISCLOSURE: The authors have indicated Such policies typically have have Such policies typically nocturnal ventilatory support. nocturnal ventilatory support. they have no relevant torelevant this theyfinancial have norelationships financial relationships to this exceptions for childbirth, patients exceptions for childbirth, patients article to disclose. article to disclose. with disabilities, and endand of life, with disabilities, end as of life, as The patient’s mothermother broughtbrought her The patient’s her FUNDING: No externalNofunding. FUNDING: external funding. discussed in a Pediatrics Ethics Ethics discussed in a Pediatrics emergently to the emergency emergently to the emergency POTENTIAL CONFLICTS OF INTEREST: The authors POTENTIAL CONFLICTS OF INTEREST: Thehave authors have 1 Uniform RoundsRounds in 2020. Uniform in1 2020. department after accidental indicated they have no interest ofto interest to department after accidental indicated theypotential have noconflicts potentialofconflicts disclose. disclose. application of theseofpolicies may, may, decannulation. application these policies The mother was was decannulation. The mother however, create disproportionate to replace the tracheostomy however, create disproportionate unable unable to replace the tracheostomy Mosley LAntommaria A H. M. A H. M. To cite:E,Lanphier E, Mosley LAntommaria burdensburdens for vulnerable individuals, homeatbut maintained the for vulnerable individuals, tube attube home but maintained the To cite: Lanphier Assessing Assessing Visitor Policy Exemption Requests Requests Visitor Policy Exemption such assuch single and those patencypatency with a small as parents single parents and those stoma’sstoma’s with a small During theDuring COVID-19 . Pediatrics. thePandemic COVID-19 Pandemic . Pediatrics. living inliving poverty. We present a case a casecatheter. The otolaryngology team team 2021;148(2):e2021051254 in poverty. We present catheter. The otolaryngology 2021;148(2):e2021051254 in which application of serial dilations and and in consistent which consistent application of performed performed serial dilations

ETHICSETHICS ROUNDS ROUNDS

PEDIATRICSPEDIATRICS Volume 148, number August 2,2021:e2021051254 Volume 148,2,number August 2021:e2021051254

oaded from http://publications.aap.org/pediatrics/article-pdf/148/2/e2021051254/1353959/peds_2021051254.pdf Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/2/e2021051254/1353959/peds_2021051254.pdf erican Pediatrics, William Larkin byAcademy AmericanofAcademy of Pediatrics, William Larkin August on 2022 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

115

in moral matters. Adequate attention assesses unique circumstances with the understanding that they may require formally unequal response to be equitable.3 Walker’s view recognizes different needs, starting points, and hardships and that justice requires attention to differences. Following Walker, adequate attention supports a kind of procedural equality rather than formal equality for visitor policy exemption requests. Each family has equal access to a clear and transparent process for equitable consideration of their request. Depending on the institution and its existing systems, this could entail a standing team comprising clinician, social work, ethics, and family relations representatives, or a set process for convening a team to include representation of specific roles (ie a physician, nurse, and social worker from the primary team, ethics, and family relations). Crystal Brown and Georgina Campelia advocate for “equity consultants and committees” composed of “ethics consultants, clinicians, researchers, or other advocates with expertise in issues around health equity” to support clinical care and decision-making within hospitals, including in the context of COVID-19 visitor restriction policies.5 Brown and Campelia consider equity committee review of visitor policy exemption requests for “patients with low English proficiency who typically rely on family to help with translation or advocacy,” for example. Such situations may not standardly meet narrow clinical risk/benefit thresholds to grant an exemption, but when assessed through an equity lens could warrant exemption. Equity consultants or committee members would also be aware of

and help mitigate implicit bias that can arise even when one believes to be implementing a policy or decision fairly. Additionally, they could participate in policy development or review to ensure that policies routinely triggering equity concerns are revised in ways that meet clinical and equity objectives. In this case, it would be important for the consultants or committee to talk with the patient’s mother to better understand the effects of the policy on her and her family. This conversation might reveal that both currently proposed options undermine justice considerations and are unfavorable from a clinical risk/benefit standpoint. The clinical and psychological needs of this particular patient may only be adequately supported through parental presence, reducing risks of the patient harming herself and increasing the likelihood of a successful procedure. Respite care could significantly increase the sibling’s exposure to COVID-19 and, by extension, exposure of the patient and mother, as well as be psychologically harmful to the mother and sibling. Delaying the procedure to allow for family to travel and quarantine from out of state may pose disproportionate risks to the patient and may not be logistically or economically feasible. Such additional information might justify granting an exemption to both visitor policies. A formalized process for exemption request evaluation takes a more substantive view of justice, recognizing social and economic features impacting health care. Turning adequate attention to this family’s situation helps identify a bias within the visitor policies obscured by their supposed universality: the policies disadvantage families that do not have coparents, extended family, or

PEDIATRICS Volume 148, number 2, August 2021 Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/2/e2021051254/1353959/peds_2021051254.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

116

PEDIATRIC COLLECTIONS

paid caregivers involved in their lives, on whom they can rely for child care. Would a formal review of the exemption request suggest revising the visitor policy entirely, such that solo parents are permitted to bring additional children to the hospital during the COVID-19 pandemic, or room in overnight? Such a conclusion misses the importance of both the risk-related reasons for the visitor restrictions and the equity considerations that might warrant at times overriding them. Not all families have the same resources, or constraints. It is easy to imagine multiparent households facing significant limitations on child care resources or work schedule constraints that limit their ability to be at bedside even if they believe their presence is essential to their child’s care. In contrast, some solo parents of multiple children might have access to supportive networks of paid or family caregivers and access to paid leave from work. Having established policies in place is essential for reasons of safety and efficiency. At the same time, extending adequate attention to particular situations enables balancing equity considerations within health considerations. During the COVID-19 pandemic, relevant health considerations also include attention to local COVID-19 transmission rates and travel restrictions impacting access to family members from outside the region, at the time of this patient’s care. Hospitals have mechanism to consider visitor exemptions. My suggestion is that more robust and transparent processes, such as visitor restriction review committees, equity committees, or individual equity consultants, as Brown and Campelia suggest, do a

3

subsequent successful replacement of the cannula. Their examination revealed significant peristomal ulceration and granulation tissue, which place the patient at increased risk of further complications, including pain, infection, fistula formation, stricture, repeat decannulation, and difficulty with recannulation. The team recommends urgent stoma revision within 1 month. The patient’s mother agrees to schedule the procedure in 2 weeks, and the patient is discharged from the hospital. Before the procedure and subsequent overnight admission, the team calls the patient’s mother to review COVID-19 precautions, including preoperative severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) testing and visitor restrictions. The pre–COVID-19 visitor policy prohibited siblings from staying with the patient overnight, and COVID-19 restrictions permit only 2 visitors and prohibit minor siblings from visiting at all. The patient’s mother is concerned that, as a single parent without extended family or friends in the area, she does not have child care for the patient’s younger sibling. The team acknowledges the difficulty and expresses understanding if the patient’s mother is unable to be present during the patient’s hospitalization. However, the patient’s mother expresses deep concern about being absent; the patient becomes agitated in unfamiliar settings. Previously, the patient became so distressed she caused unintentional self-harm, including decannulation. The perioperative social worker offered to connect the mother with free, temporary child care services through a licensed respite agency, with which the hospital has worked successfully on multiple occasions.

The patient’s mother appreciates this support, but worries about leaving her younger child with unknown persons. She worries this creates a new source of COVID-19 exposure for her family, including the patient on discharge from the hospital. She requests an exemption to the visitation restrictions and the social worker is unsure what to do; she worries that the hospital visitation restrictions place an undue burden on the family, but an exception would be unfair to other families and might be unsafe for the patient’s sibling.

ELIZABETH LANPHIER, PHD, COMMENTS This case raises questions about appropriate targets of justice in a clinical context, how to balance considerations of clinical risk and considerations of fairness, and how social and economic inequities impact clinical care. It also reflects how the COVID-19 pandemic continues to reveal health and social inequities experienced by individuals and families. Unlike principles of autonomy, beneficence, or nonmaleficence, which focus narrowly on the patient, justice requires a wider lens. If justice is each person receiving their due, then each person is due something in relation to and from others and institutions. When concerns of injustice arise, it is because certain benefits or burdens are not fairly distributed among individuals or groups. Traditional accounts of justice associate universalizability and equality with fairness. But critics of universalist programs for justice note how adopting formal equality, according to which persons are presumed equal and equal persons are due identical treatment, fails to account for differences produced through luck, chance, and

2

circumstance that advantage some while disadvantaging others. Universalist approaches can flatten difference in ways that overlook rather than address structural oppression2 and bias,3 including implicit bias. Henry T. Puls contends that “as it pertains to justice, any policy restricting visitors for pediatric patients should be applied equally.”1 Applying a visitor policy equally without exception applies formal equality: each patient and family is treated exactly the same. Yet this case shows how each patient and family is unique. Chance, luck, or circumstance create disproportionate burdens on some relative to others that can render equal treatment inequitable treatment. For example, historical racial oppression and ongoing explicit and implicit racial and ethnic bias can create inequitable conditions that formal equality cannot address. The allocation of COVID-19 vaccines by age, according to which older age groups were prioritized first, is an example of a formally equal process. Yet by allocating vaccines “equally” by age in the US, according to Sarah Reber, “you’re going to vaccinate white people who have lower risks before you vaccinate Black people with higher risks,” although Black individuals were dying at higher rates from COVID-19 than white individuals during the pandemic.4 Procedural equality would seek a more refined process for adjusting for structural difference, such as vaccinating by social vulnerability index or other metrics, which Reber notes could yield a program to “vaccinate Blacks who are about 10 years younger than whites” in the same vaccination waves.4 According to Margaret Urban Walker, justice requires adequate attention rather than equal attention

LANPHIER et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/2/e2021051254/1353959/peds_2021051254.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

117

better job of promoting justice in health care than putatively equal treatment and ad hoc exemptions, which could be susceptible to bias or inattentive to structural inequality. However this process is structured, having clear and communicable processes mitigates perceptions of unfairness, while attending to structural differences and promoting greater equity. Some might worry granting one or both exceptions would be unfair to other families and, potentially, to hospital staff. Other families have additional child care duties yet adhere to visitor policies without accommodation. Staff could be in the difficult position of navigating the presence of a minor sibling in the patient’s room during care, especially overnight, or responding to frustrated families who see a minor sibling present on the unit. When other families express concern that the visitor policy is unfairly implemented because they see the patient’s 2-year-old sibling on the unit, or when staff express concern about how to explain these differences, the response is grounded in a commitment to equitable family centered care. Instead of divulging individual families’ circumstances by way of explanation, staff can explain how a commitment to equitable family centered care translates into a review process that extends adequate attention to each family’s needs, including, if they would like, their own.

LUKE MOSLEY, MD, MTS, COMMENTS Aimed at preventing transmission of SARS-CoV-2 and limiting the impact of COVID-19 at both an institutional and societal level, visitor restriction policies raise a number of ethical concerns when concretely applied. This family’s request for exemption intersects with a preexisting policy

preventing minors from rooming-in overnight and a pandemic-specific policy strictly limiting visitation to 2 adult caregivers. Hospital visitor restrictions reflect (potentially competing) interests of safety, duty, and justice. Hospitals have a duty to both (1) care for patients and protect the safety of patients, families, visitors, and staff. Parents and guardians have (2) a comparable duty to care for their children. Hospital policies must be applied fairly to uphold (3) a principle of justice, including equal application that does not discriminate on the basis of age, sex, gender, religion, race, ethnicity, or socioeconomic status.1 Ideal hospital policy balances these 3 interests, allowing all parties to uphold their particular duties as best as possible. In this case, both routine and pandemic visitor restriction policies impact these 3 interests. The routine policy aims to protect both patients and visitors in multiple ways. First, these policies limit infectious risks in the hospital (even in the absence of pandemic risks) by restricting minor presence overnight. Similar restrictions have been associated with significantly decreased health care–acquired respiratory viral infections among patients.6 Second, the policy mitigates possible safety concerns, including the myriad risks of a sibling in a hospital environment overnight. In this scenario, siblings may be inadequately supervised around medications, hospital equipment, and medical supplies while parents are sleeping and/or attending to the needs of the patient along with hospital staff, ultimately placing patient, family, and staff at risk for harm. The policy upholds the hospital’s duty to protect patient safety and, by extension, family, visitor, and staff safety through risk mitigation.

4

This case demonstrates that equal application of policy does not necessarily ensure equitable application. A policy that effects more vulnerable populations disproportionately is in fact inequitable.7 Although this policy places inconvenience on those who can afford private child care or rely on family members to help watch siblings, the restriction can, as in this case, place substantial burden on other parents and subsequently prevent them from upholding their duty of care. In this setting, the rule is unjust. Cases like this one are not particularly rare. Our institution recognizes this inequity, and works toward just solutions. As with this case, some families are offered emergency respite services for siblings. Although placing children with unfamiliar caregivers is not ideal, it has proven to be a safe and successful option. In other cases, particularly with infant siblings, exceptions to the policy have been

LANPHIER et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/2/e2021051254/1353959/peds_2021051254.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

118

Compliance with the policy is one way for parents to uphold their duty of care by helping reduce their child’s risk of respiratory infection during hospitalization as well as limit the sibling’s potential exposure to harm. However, this restriction does place significant burdens on families. Families may not have physical or material means to arrange child care for siblings. Parents are then faced with the difficult choice to leave the patient alone during much if not all of the hospitalization. Although hospital staff is well equipped to provide for the physical safety and wellbeing of the patient, a potential for psychological harm to the child or medical error without a caregiver present is real, particularly in the context of a child with complex illness. Here, a parent’s duty to care for their children (both patient and sibling) is compromised.

PEDIATRIC COLLECTIONS

granted and siblings have been allowed to remain with the patient and parent overnight. Exceptions are granted on a case-by-case basis, whereby the risk versus benefit of allowing a sibling to stay is evaluated by the social work department, sometimes in conjunction with ethics consultation. Within this framework of justice and equity, the parent’s request in this case is reasonable and necessitates close consideration. Outside of the current pandemic, I would argue that the mother’s request should be granted. The procedure itself is uncomplicated and the hospitalization is not expected to be protracted. Denying the exception request poses potential risk of psychological distress for both mother and children. If left with hospital staff, the patient could become agitated and place herself at risk for harm. Conversely, if the mother remains with the patient and places the sibling in respite care, the sibling could experience distress being in the care of unknown providers. In either scenario, the mother is also at risk for psychological distress while worrying about the child not in her direct care. Without financial or social resources to choose otherwise, this mother has 2 poor options, both of which impede her ability to care for her children as she sees fit. Arguably the application of the routine visitor restriction in this case is inequitable, and as such, exception is justifiable. However, this case does not occur within “normal” times and must be scrutinized within the context of the COVID-19 pandemic and the secondary policy restricting all patient visitation to 2 adult caregivers. This case hinges on whether the COVID-19 pandemic substantially alters the balance of a hospital’s duty, a parent’s duty, and justice.

SARS-CoV-2 has extensive community spread. Communities continue to see dramatic increases in case positivity, emergency department visits, hospital admissions, and death.8 Without widespread vaccination, strict visitation restriction remains a critical public health measure. These realities alter the ethical dialectic. The risk of viral spread and illness to both patients and the community is dramatically heightened. As a direct corollary, hospitals are ethically justified, and arguably, required, to rigorously implement policies to protect the health and safety not only of patients, families, and staff but also at the scale of population health. A hospital’s duty shifts during a pandemic beyond the needs of immediate individuals. Visitation restriction, known to reduce viral transmission in routine medical care, can and should be bolstered, including not only more stringent visitation restrictions but also raising the threshold for justifiable exemption. The mother’s exemption request in this case must be reexamined with this altered balance of burdens, risks, and benefits. With both routine and pandemic restriction, the mother remains faced with the choice to be physically present with either the patient or the sibling overnight. The pandemic restriction extends this choice to daytime hours as well. The primary burdens remain unchanged: potential psychological distress on family and hindrance of the mother’s ability to ideally care for both children. Weighed in light of the current state of the COVID-19 pandemic, however, these burdens no longer reach the threshold required for exemption. The risk of COVID-19 transmission at the community level and within the hospital setting is simply too high. Societal costs of not reducing spread

are dire: higher death tolls, continued economic debilitation, and yet unquantified morbidity. Furthermore, the COVID-19 pandemic has disproportionately affected minority populations across multiple domains.9 Inadequate prioritization of public health measures then simultaneously runs the risk of propagating preexisting health inequities for already vulnerable populations. Within this case, then, the potential benefit of strict adherence to visitation restriction increases, as does risk of nonadherence. The burden of the policy’s application to this individual family is similar to nonpandemic times. The alternative options offered to the mother, either leaving the patient in the care of hospital staff or placing the sibling in temporary respite care, are safe, reasonable solutions, although certainly not ideal. The patient’s mother will undoubtedly be dissatisfied with what feels like an imposition on her ability to care for her children as wished. She may, indeed, refuse all the options presented as untenable pathways to dutifully care for her children and defer the patient’s procedure. Such a decision, however, would reasonably be critiqued as not in the patient’s best interest given the medical risks of inaction. Because difficult social situations are unfortunately not rare for our patients, offering exemption becomes problematic. Even a small set of exemptions to policy within the context of a global pandemic can effectively negate the benefits of the rule, essentially eliminating the value of social distancing. Justice here takes a different tone. A hospital’s expanded sphere of duty during pandemic necessitates a broadened view of justice. During a pandemic, population level considerations take precedent over (but do not erase) individual considerations. The application of

PEDIATRICS Volume 148, number 2, August 2021

5

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/2/e2021051254/1353959/peds_2021051254.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

119

the rule continues to have elements of inequity and uneven burdens. However, individual, family, community, and truly global health and societal justice are at stake. The balance of benefit and risk is shifted, and fair application is concordantly reframed.

OUTCOME The hospital upheld both visitor policies without exception. It believed that making safe child care available for the patient’s sibling at no cost to the patient’s mother adequately addressed the disproportionate effect of the policies on this patient and her family. The patient’s mother decided to delay the procedure. She rescheduled for 5 weeks after the patient’s initial emergency department admission for a family member to travel from out of state and quarantine before caring for the patient’s sibling during the patient’s hospital stay. Although the procedure was delayed beyond the recommended time frame, the patient did not experience any adverse outcomes because of this postponement. Her mother was able to remain with her throughout her hospitalization.

ARMAND H. MATHENY ANTOMMARIA, MD, PHD, COMMENTS Although increasing vaccination rates may permit some relaxation of increased visitor restrictions, they are unlikely to return to “normal” for the foreseeable future. Not making an exception to them might be fair but result in significant harm to the

patient. The hospital has been attentive to the disparate impact of its visitor restrictions on this patient and her family. It attempted to address the family’s unique circumstances and the disproportionate burden on them by arranging safe and reliable child care for the patient’s sibling. The potential risks and discomforts to the sibling are commensurate to those experienced by other children, for example, left in the care of a coworker’s adolescent child or a fellow member of a religious community. If the patient’s mother, however, is unwilling to accept this option and postpones the patient’s care indefinitely, the patient may be placed at significant risk of harm. If there is an imminent risk of death or serious disability, postponing treatment might constitute medical neglect. Coercing treatment might, however, result in other significant, secondary harms. Even if it does not constitute medical neglect, the patient might be at substantially increased risk of serious complications including a hypoxic ischemic injury. Depending on the magnitude and frequency of these risks, granting an exception to the visitor restrictions to permit the sibling to stay overnight might be unfair to other patients and families but justified on the basis of protecting the patient’s best interests.

ABBREVIATIONS COVID-19: coronavirus disease 2019 SARS-CoV-2: severe acute respiratory syndrome coronavirus 2

6

1. Virani AK, Puls HT, Mitsos R, Longstaff H, Goldman RD, Lantos JD. Benefits and risks of visitor restrictions for hospitalized children during the COVID pandemic. Pediatrics. 2020;146(2): e2020000786 2. Young IM. Justice and the Politics of Difference. Princeton, NJ: Princeton University Press; 1990 3. Walker MU. Partial consideration. Ethics. 1991;101(4):758–774 4. Thomas WC, Grabenstein H. People over 75 are first in line to be vaccinated against COVID-19. The average Black person here doesn’t live that long. Pro Publica. February 12, 2021. Available at: https://www.propublica.org/article/peopleover-75-are-first-in-line-to-be-vaccinatedagainst-covid-19-the-average-black-persondoesnt-live-that-long. Accessed April 27, 2021 5. Brown CE, Campelia GD. Counteracting COVID-19 health care inequity: supporting antiracist practices at bedside. Am J Bioeth. 2021;21(2):79–82 6. Washam M, Woltmann J, Ankrum A, Connelly B. Association of visitation policy and health care-acquired respiratory viral infections in hospitalized children. Am J Infect Control. 2018;46(3):353–355 7. Kaye EC. COVID-19 caregiver restrictions in pediatrics. Hosp Pediatr. 2021;11(1): e12–e14 8. Centers for Disease Control and Prevention. COVID-19 response. Demographic Trends of COVID-19 cases and deaths in the US reported to CDC. 2020. Available at: https://covid.cdc.gov/covid-data-tracker/ #demographics. Accessed February 16, 2021 9. Tai DBG, Shah A, Doubeni CA, Sia IG, Wieland ML. The disproportionate impact of COVID-19 on racial and ethnic minorities in the united states. Clin Infect Dis. 2021;72(4):703–706

LANPHIER et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/2/e2021051254/1353959/peds_2021051254.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

120

REFERENCES

PEDIATRIC COLLECTIONS

Pediatric Palliative Care in in a Pandemic: Pediatric Palliative Care a Pandemic: Role Obligations, Moral Distress, and Role Obligations, Moral Distress, and thethe Care You Can Give Care You Can Give a b a b AmandaAmanda M. Evans, FRACP, FAChPM, Monique Jonas, DMedEth, John Lantos, MDc MDc M. MbChB, Evans, MbChB, FRACP, FAChPM, Monique Jonas, DMedEth, John Lantos,

abstract abstract

Many Many ethicalethical issuesissues arise concerning the care critically ill andilldying arise concerning theofcare of critically and dying patients duringduring the coronavirus disease 2019 2019 (COVID-19) pandemic. In thisIn this patients the coronavirus disease (COVID-19) pandemic. issue’sissue’s EthicsEthics Rounds, we present 2 cases that highlight 2 different sorts of Rounds, we present 2 cases that highlight 2 different sorts of ethicalethical issues.issues. One isOne focused on theon decisions that have be made when when the the is focused the decisions that to have to be made surge surge of patients with respiratory failurefailure overwhelm ICUs. ICUs. The other is of patients with respiratory overwhelm The other is focused on theon psychological issuesissues that arise parents who are caring for for focused the psychological that for arise for parents who are caring a dying child when infection-control policies limit the number of visitors. Both Both a dying child when infection-control policies limit the number of visitors. of these situations raise challenges for caregivers who are trying to be honest, of these situations raise challenges for caregivers who are trying to be honest, a a John Hunter Hospital,s New Lambton JohnChildren’ HuntersChildren’ Hospital, New Heights, LambtonNew Heights, New b b to dealtowith distress, and toand provide compassionate deal their with own theirmoral own moral distress, to provide compassionate South Wales, Department of Generalof Practice, SouthAustralia; Wales, Australia; Department General Practice, Faculty ofFaculty Medicalof and Health The University of Medical andSciences, Health Sciences, The University of palliative care. care. palliative c c Auckland,Auckland, Auckland,Auckland, New Zealand; Bioethics Center, Center, New and Zealand; and Bioethics Children’sChildren’ Mercy Hospital, Kansas City, Missouri s Mercy Hospital, Kansas City, Missouri

CASE 1CASE 1

Drs Evans Jonas and designed Drsand Evans andconceptualized Jonas conceptualized and designed the article, initial and the drafted article, the drafted themanuscript, initial manuscript, and

music music and laughs when when his head and laughs his and head andreviewedreviewed and revised manuscript; Dr Lantos and the revised the manuscript; Dr Lantos cheek cheek are stroked. are stroked. advised advised on the initial conceptualization and design on the initial conceptualization andofdesign of

David David is a 14-year-old boy with is a 14-year-old boy with the article, for the finished article, article, thewrote article,paragraphs wrote paragraphs for the finished severesevere cerebral palsy. palsy. He is He is cerebral He was to the to pediatric Hereferred was referred the pediatric and reviewed and revised manuscript; and all and all and reviewed and the revised the manuscript; dependent on hison parents for all for all dependent his parents palliative care (PPC) team because of palliative care (PPC) team because of authors authors approvedapproved the finalthe manuscript as submitted final manuscript as submitted activities of daily Functionally, activities of living. daily living. Functionally,his increasing hospitalizations and how his increasing hospitalizations and how and agree be accountable for all aspects of andtoagree to be accountable for all aspects of he is unable to holdtohis head or up or vulnerable the work. he is to he is unable hold his up head the work. vulnerable herapid is to deterioration. rapid deterioration. mobilize; therefore, he requires The family has discussed advance care care mobilize; therefore, he requires The family has discussed advance DOI: https://doi.org/10.1542/peds.2020-1163 DOI: https://doi.org/10.1542/peds.2020-1163 with his PPC and alland all AcceptedAccepted a hoista for all for transfers, for example, planning with histeam, PPC team, hoist all transfers, for example,planning for publication Apr 14, 2020 for publication Apr 14, 2020 agree agree that ifthat he has a condition that isthat is if he has a condition from bed chair. hasHe epilepsy and and fromtobed to He chair. has epilepsy Address Address correspondence to Amanda M. Evans,M. Evans, correspondence to Amanda such as a respiratory reversible, such as a respiratory increased tone, and is unable to increased tone,heand he is unable to reversible, MbChB, MbChB, FRACP, FAChPM, c/o Johnc/o Hunter s FRACP, FAChPM, John Children’ Hunter Children’ s infection, then itthen is worth treating. But But infection, it is worth treating. Hospital,Hospital, New Lambton Heights, Heights, New Lambton, communicate and has issues with his New Lambton New Lambton, communicate and has issues with his NSW 2330, Australia. E-mail: amaevans@ not have Newcastle NSW 2330, Australia. E-mail: amaevans@ he should not cardiopulmonary have cardiopulmonaryNewcastle sight and Recently, he hashe has he should sighthearing. and hearing. Recently, gmail.com gmail.com resuscitation if his heart stops or if he resuscitation if his heart stops or if he worsening respiratory failure and is worsening respiratory failure and is (ISSN Numbers: Print, 0031-4005; Online, Online, arrest;arrest; instead, he PEDIATRICS (ISSN Numbers: Print, 0031-4005; has a respiratory instead, he PEDIATRICS reliantreliant on noninvasive ventilation at on noninvasive ventilation athas a respiratory 1098-4275). 1098-4275). should have medications to keep him should have medications to keep him night and needed oxygenoxygen for for nighthas and has needed Copyright © 2020 © by 2020 the American AcademyAcademy of and pain Copyright by the American of comfortable andfree. pain free. intermittent hypoxic episodes duringduringcomfortable intermittent hypoxic episodes Pediatrics Pediatrics

the day. is fed byfed a gastrostomy mothermother is becoming extremely theHe day. He is by a gastrostomy David’sDavid’s is becoming extremely FINANCIAL DISCLOSURE: The authors have indicated FINANCIAL DISCLOSURE: The authors have indicated concerned about about the global COVID-19 tube, and hashe anhas indwelling concerned the global COVID-19 tube,heand an indwelling they have no have financial relationships relevant relevant to this to this they no financial relationships Her concern is not is whether urinary catheter. This year, hashe has pandemic. pandemic. Her concern not whether urinary catheter. Thishe year, article toarticle disclose. to disclose. will contract the virus will contract the itself virus but itself but had multiple presentations to the to the David David had multiple presentations FUNDING: No external funding. funding. FUNDING: No external that if that he develops any respiratory if he develops any respiratory hospital for aspiration pneumonia and and hospital for aspiration pneumonia POTENTIAL CONFLICT OF INTEREST: The authors have have POTENTIAL CONFLICT OF INTEREST: The authors infection duringduring the pandemic, he willhe will infection the pandemic, respiratory failurefailure and would usuallyusually respiratory and would indicatedindicated they have no have potential conflictsconflicts of interest they no potential of interest theget usual treatment the supportive usual supportive treatment requirerequire a stay ainstay the in PICU highto disclose. the for PICU for high- not getnot to disclose. he would requirerequire (ie, PICU he would (ie, stay PICUand stay and pressure, noninvasive ventilation and and pressure, noninvasive ventilation noninvasive ventilation). noninvasive ventilation). one-on-one nursing. Each discharge, he one-on-one nursing. Each discharge, he To cite: To Evans Jonas Lantos Pediatric cite:AM, Evans AM,M,Jonas M, J.Lantos J. Pediatric Care in Care a Pandemic: Role Obligations, in a Pandemic: Role Obligations, is taking longerlonger to recover. However, his David’s is taking to recover. However, his David’s mothermother has been has persistently been persistently PalliativePalliative and theand CaretheYou CanYou Give. Moral Distress, Care Can Give. mothermother reportsreports he hashe reasonable the PPC askingasking for for Moral Distress, has reasonable contacting contacting theteam, PPC team, Pediatrics. 2020;146(1):e20201163 Pediatrics. 2020;146(1):e20201163 qualityquality of life;ofhelife; loves and and reassurance that her son benot be he movies loves movies reassurance that herwill sonnot will

PEDIATRICS Volume 146, number 1, July 2020:e20201163 PEDIATRICS Volume 146, number 1, July 2020:e20201163

ETHICS ROUNDS ETHICS ROUNDS

oaded from http://publications.aap.org/pediatrics/article-pdf/146/1/e20201163/1079701/peds_20201163.pdf Downloaded from http://publications.aap.org/pediatrics/article-pdf/146/1/e20201163/1079701/peds_20201163.pdf erican AcademyAcademy of Pediatrics, William Larkin by American of Pediatrics, William Larkin August on 262022 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

121

prejudiced against. The team is unable to guarantee that he would receive his usual treatment in view of the potential of PICU becoming overwhelmed with adult patients with COVID-19. The PPC team members express their concern with each other that his mother is correct and wonder about preparing his mother to start planning how to keep him at home should he become unwell. They do so, knowing that he will likely die before the end of winter because of the scarcity of resources.

in her local community, and the hospital nurses and doctors.

CASE 2

When the COVID-19 pandemic occurs, the oncology ward is nervous about what this means for their vulnerable population. It takes a few weeks until the reality of the pandemic transpires, and visitors are restricted. Initially, exceptions are made for Felicity: she could still go out and about to see friends, whereas other patients were not allowed. But after a week of this, the hospital’s policy was tightened: 1 parent only at the bedside and no siblings, and for dying children, 2 parents only at the bedside.

Felicity is a 14-year-old girl from a small regional town with end-stage Ewing sarcoma. She recently presented to her tertiary hospital with acute-onset respiratory distress, and a scan revealed new metastases in her lungs. There are no further curative treatment options available to her. She has started some oral morphine for breathlessness and some low-flow oxygen. Her parents are obviously devastated, and a referral was made to the PPC team for support and advance care planning. When discussing where she wants to be for end of life, both the parents and Felicity feel safe in the hospital. They feel that their regional town is too far away for medical support, and they have lived here on and off for the last 2 years of treatment and follow-up, making them feel at home and comfortable with staff they know care about them. Her parents are feeling extremely shocked and overwhelmed by the recent poor prognosis and the possibility that she is dying. They also express their need to be her “parents,” rather than her “carers.” They have all agreed to stay in the hospital.

She remains in the hospital for a few weeks, and there is a noticeable deterioration in that time. She is becoming more fatigued, she is sleeping most of the day, and her mobility is decreasing. She is now unable to mobilize because of fatigue and breathlessness. She has many visitors and saves her energy for small bursts of time when they are in the room. She enjoys leaving her room and being walked around in the chair to get out and about.

The PPC team did everything they could to advocate for Felicity. She had started deteriorating rapidly and would likely only survive days; however, the policy had to stand to protect the other patients. It was heartbreaking not being able to fulfill Felicity and her family’s wishes for togetherness at the end of her life. In the context of this pandemic, the family decided to ask for discharge and left the hospital that day. Felicity was transferred semiconscious to a family home with the support of

Felicity is 1 of 4 girls, and, along with her parents, she has an extremely supportive and large extended family. Felicity is loved by many, including her friends at school, her many peers

2

DISCUSSION Moral Distress Clinicians who are unable to provide care that they regard as clinically indicated often experience moral distress. This reaction, rooted in their own sense of professionalism, is likely to be exacerbated by the distress, alarm, fear, and recriminations communicated by families after learning that their child will be unable to access services that they depend on (eg, David’s case). Parents who have relationships of trust with clinical teams are also likely to experience moral distress as they realize the impact of withdrawal of access on their own ability to meet their child’s needs (eg, Felicity’s case). Moral distress refers to the experience of being unable to take the action that one believes to be morally right or required.1 It has been reported across a range of medical and nursing specialties, including pediatrics,2 intensive care,3–5 and palliative care.6,7 Common precipitators of moral distress include the inability to provide care because of resource constraints, involvement in care that one deems to be against a patient’s interests, and disputes about care planning with families and within teams. Working within the COVID-19 pandemic, in which all of the above can occur, many clinicians are * In this case, the child was able to leave the hospital to be with her family, but, sadly, in cases of COVID-19, this will not occur. There are stories of adults dying alone as their family remain in isolation, and this goes against all we try to achieve with palliative care and the reason most of us do our jobs. Maintaining relationships and communication at the end of life is of upmost importance to us, and it is hard to reconcile these 2 opposing worlds and provide the best care possible.

EVANS et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/146/1/e20201163/1079701/peds_20201163.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

122

community palliative care nurses and the PPC team. She died a few days later, comfortable and surrounded by her family.*

PEDIATRIC COLLECTIONS

experiencing moral distress. For some who are in the hardest hit areas, moral distress is a daily concern. For others who are working in areas that have not yet been overwhelmed, the anticipation of distress is palpable. Reports from hardest hit areas8,9 permeate the thoughts of our Australian-based PPC team as we face the prospect of being unable to meet dying patients’ and their families’ wishes and needs. We anticipate that a lack of resources may soon contribute to earlier-than-expected deaths. In contrast with moral dilemmas (in which there is no apparent right action), moral distress is produced when an agent recognizes an act as morally required but is constrained from acting. Such is the situation for the PPC teams in the above cases. They know what ought to be done. They just cannot do it because of the circumstances. A moral judgment underlies the deeply uncomfortable, often emotional experience of moral distress, but the details of that judgment may be partially submerged in the affective dimensions of distress. The confusion that accompanies moral distress amplifies its negative effects. Pulling those judgments to the surface enables their conscious consideration. That process may partially alleviate distress and point to a way forward. One reason that it is important to acknowledge and address moral distress is that such distress can produce a sense of helplessness and personal futility, feelings that disable and can promote emotional and physical withdrawal from distressing situations. Because moral distress is a response to the inability to act as one perceives one should, it may cause a sense of ineffectiveness in one’s professional role. When we feel ineffective, we are less inclined to act at all. These feelings have contributed to professional burnout and an intent to leave current roles.2

Identifying the feelings of moral distress and the source of those feeling can help clinicians move through the paralysis and focus on practical and action-oriented solutions. When standard clinical options are unavailable, it is more important than ever to look for ways to provide care and support to families. Although standard options for meeting the needs of patients and families are unavailable in both David’s and Felicity’s cases, meaningful options remain. Careful (in both senses of the word) assessment of one’s professional role obligations can alleviate guilt, restore a sense of agency, and encourage continued outreach to families in need.10 PPC teams are accustomed to providing care that addresses need, improves well-being, and relieves suffering without seeking to resolve the underlying cause. Usually, the underlying cause is an incurable disease. In these cases, the underlying cause is an overwhelmed health care system. Doctors who are providing care in these situations need to understand that it is not their fault that they are working in a nonideal situation in which established best practices are not available and the available options seem inadequate. In these circumstances it can feel as if one is failing to meet one’s role obligations because role obligations are connected to provision of quality care. The contrast between the service one would seek to provide (and which would be recognized by peers as optimal or even adequate) and the service that one can provide can feel debilitatingly unacceptable. Why bother at all if all we can do is stand by and watch as children die without the usual and expected support? Usually, the tough task of providing care to children at end of life is weathered through sitting within distress and providing comfort by being present. Additionally, reward is

garnered by making an intolerable and painful situation a little more tolerable by providing the best care that can be offered. The stakes are high, humans only die once, and the pain of a child dying is intense. Clinicians want to do anything humanly possible to alleviate that pain and to get it right. When we cannot and when the care we provide is less than what we know is possible and expected, we end up suffering as we helplessly bear witness to care that feels unacceptably inadequate.

Role Obligations and the Realm of Possibility The connection that we draw between professional role obligations and best practice standards can be misleading. Standards govern the realm of what is possible; ideals govern the realm of what should be possible. In Kantian-inspired reasoning about duties, the principle “ought implies can” functions to situate our obligations within the realm of possibility.11 We cannot have an obligation to save a life that cannot be saved: we can only be obliged to do what we can. Of course, it is important to question assumptions about what is possible and to strive for better things. But rather than encouraging complacency, recognizing that we can only be obliged to do what we are able to can be empowering. It can help us focus on what is possible rather than what is ideal. And what is possible may be more than what first appearances suggest. In these cases, it is not within the PPC team’s gift to provide access to previously available services and conditions when crisis management policies kick in. Applying “ought implies can,” the team does not fail when access is withdrawn. Although the PPC team is likely to be charged with communicating the policy and its impacts, the policy is not their act. Although they would normally be responsible for advocating for

PEDIATRICS Volume 146, number 1, July 2020

3

Downloaded from http://publications.aap.org/pediatrics/article-pdf/146/1/e20201163/1079701/peds_20201163.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

123

a patient to be admitted to the PICU on the basis of their clinical judgment, that responsibility and the discretion it entails has been lifted from them. One way of dealing with moral distress is to see that as a clinician providing care in these circumstances, the situation is not one of your making. It is not your role, as a clinician, to change the policies and to transform the situation into one that is preferable to your patient. It is only your role to act well within your scope of responsibility and to be the best clinician that you can be under the circumstances. Recognizing the limits of one’s powers can relieve a burden of guilt that is unconnected with one’s own choices and actions. It does not reduce the suffering, distress, and grief of patients and families that form the focus of palliative care. It also does not protect doctors from their own feelings of distress and grief. But it should absolve clinicians of feelings of guilt or self-blame for their own and their patients’ and families’ suffering. Although these cases can feel hopeless and the clinicians feel helpless, shifting focus from what one cannot do to what one can is potentially a key element in continuing to provide care for these children in these times.

The Expressive and Relational Elements of Care Pandemic ICU access policies1 may prevent children from receiving the clinical support that they would otherwise receive and could benefit from. These policies clearly place tremendous practical and emotional burdens on families and force them to accept or make unbearable decisions. Significant elements of the pediatric palliative role are simply to acknowledge suffering, to respond to it with care, and to be present for the patient and the family. The importance of these acts of presence, witness, and compassion can be

obscured by the tasks and tools of clinical activity, but evidence suggests that patients place a high priority on the relational elements of medical care.12,13 Wool et al14 demonstrated this within the antenatal context, in which 92% of parents, when questioned, felt satisfied with the care provided, despite knowing that their infant would not survive, because of the compassionate support offered to them to help them cope.15 Clinical experience and research suggest that families remember the compassion of the clinician over the words used when bad news is delivered with empathy, intention, and honesty.16 Children also appreciate honesty, and knowing bad news does not mean they stop planning for their future, it does not affect adherence to medication regimes, and more importantly, they do not lose hope.17–20 Surprisingly, those who have increased hope (measured on hope scales designed by researchers) are more likely to discuss advance care plans, which some would consider as being a threat to hope.20 Allowing families space to prepare for their child’s death, giving them the opportunity to reflect on what is important to them and working creatively to have their wishes met, is enough to provide families emotional containment and peace. PPC teams achieve this with relationships and connection and are able to provide this despite lack of access to the hospital.21,22 Families report that having a team at the end of the phone whenever they reach out empowers them and allows them comfort.23 PPC teams may need to institute mechanisms to sustain them through the challenges ahead. Attention to team dynamics,3 unitlevel debriefing,24 and ethics consultations may enable maintenance of purposeful connections despite shared distress.25,26 Another way in which pediatric palliative doctors can serve their

4

Maintaining Trust in the Aftermath The world is facing an indefinite time of uncertainty in the face of the COVID-19 pandemic. For families under palliative care, this uncertain world is their day-to-day reality: they have been self-isolating for many years because they know any respiratory illness can mean death for their child, and they do not know if their child will have a life-threatening seizure or, for those who have malignancy, when a relapse could occur. They have built necessary resilience in facing uncertain futures. These families have also been within the health system and understand the constraints of a system that already bursts at the seams. Intensivists may have brought their child back from the brink of death many times in the past, revealing the vulnerability time and time again that their child faces. But losing a health system they know and expect is a different world to

EVANS et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/146/1/e20201163/1079701/peds_20201163.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

124

patients when they cannot provide standard therapies is through advocacy. Decision-makers should understand the impact that resource prioritization will have on this vulnerable patient population and should have the opportunity to consider their decisions in light of that knowledge. PPC teams can request that policies take into account and, whenever possible, meet the needs of children with palliative requirements; for instance, if priority tools for determining access are being used, teams could request that children in need are considered for access to the PICU through those tools along with other patient groups (rather than imposing blanket withdrawals of access to all patients within a given service for a specified time period). They could also request that due weight is accorded within measures of capacity to benefit to dimensions of health gain that matter to this cohort. PPC teams must be among those policy decision-makers when determining distribution of resources for children.

PEDIATRIC COLLECTIONS

them. This new lack of access to resources that they would expect and have received in the past will create feelings of betrayal, loss of control, and, more importantly, loss and grief. PPC teams are equipped to support families within this space; many times, they have been present when the delivery of bad news has occurred and have accompanied these families in their grief. Although this pandemic is something we have not faced before (in recent history), PPC teams’ ability to provide companionship and sustain connection within the trauma and bear witness to the families’ pain will be enough to maintain trust.

CONCLUSIONS Faced with the incoming tide of the COVID-19 pandemic and the likely shortages that will result, we all need to focus on what we can do rather than on what we cannot do. Vulnerable families like Felicity’s and David’s will require more skilled and sensitive communication than ever in these difficult times. Clinicians will undoubtedly feel distress when unable to provide indicated therapies. We need to help each other remember that we can always offer companionship and compassionate communication. These can be empowering by helping to ameliorate loss of trust, grief, and moral distress in a world that is uncertain. It is up to the PPC teams to demonstrate that despite lack of resources, we still have care that we can give.

ABBREVIATIONS COVID-19: coronavirus disease 2019 PPC: pediatric palliative care

REFERENCES 1. Jameton A. Nursing Practice: The Ethical Issues. Englewood Cliffs, NJ: Prentice-Hall Publishing; 1984

2. Trotochaud K, Coleman JR, Krawiecki N, McCracken C. Moral distress in pediatric healthcare providers. J Pediatr Nurs. 2015;30(6):908–914 3. Bruce CR, Miller SM, Zimmerman JL. A qualitative study exploring moral distress in the ICU team: the importance of unit functionality and intrateam dynamics. Crit Care Med. 2015;43(4):823–831 4. Dodek PM, Henrich N, Rodney P, Alden L. Causes and consequences of moral distress in the ICU: a focus group study. In: Proceedings from the American Thoracic Society 2013 International Conference; May 17–22, 2013; Philadelphia, PA 5. Prentice T, Janvier A, Gillam L, Davis PG. Moral distress within neonatal and paediatric intensive care units: a systematic review. Arch Dis Child. 2016;101(8):701–708 6. Brazil K, Kassalainen S, Ploeg J, Marshall D. Moral distress experienced by health care professionals who provide home-based palliative care. Soc Sci Med. 2010;71(9):1687–1691 7. Rushton CH, Kaszniak AW, Halifax JS. Addressing moral distress: application of a framework to palliative care practice. J Palliat Med. 2013;16(9): 1080–1088 8. Mounk Y. The extraordinary decisions facing Italian doctors. The Atlantic. March 11, 2020. Available at: https:// www.theatlantic.com/ideas/archive/ 2020/03/who-gets-hospital-bed/607807/. Accessed March 17, 2020 9. Blasi ED. Italians over 80 ‘will be left to die’ as country overwhelmed by coronavirus. The Telegraph. March 14, 2020. Available at: https://www. telegraph.co.uk/news/2020/03/14/ italians-80-will-left-die-countryoverwhelmed-coronavirus/. Accessed March 17, 2020 10. Hardimon MO. Role obligations. J Philos. 1994;91(7):333–363 11. Kohl M. Kant and ‘ought implies can’. Philos Q. 2015;65(261):690–710 12. Paterson R. The Good Doctor: What Patients Want. Auckland, New Zealand: Auckland University Press; 2012 13. Black A, McGlinchey T, Gambles M, Ellershaw J, Mayland CR. The ‘lived

experience’ of palliative care patients in one acute hospital setting - a qualitative study. BMC Palliat Care. 2018;17 (1):91 14. Wool C, Black BP, Woods AB. Quality indicators and parental satisfaction with perinatal palliative care in the intrapartum setting after diagnosis of a life-limiting fetal condition. ANS Adv Nurs Sci. 2016;39(4): 346–357 15. Wool C, Repke JT, Woods AB. Parent reported outcomes of quality care and satisfaction in the context of a lifelimiting fetal diagnosis. J Matern Fetal Neonatal Med. 2017;30(8): 894–899 16. Nyborn JA, Olcese M, Nickerson T, Mack JW. “Don’t try to cover the sky with your hands”: parents’ experiences with prognosis communication about their children with advanced cancer. J Palliat Med. 2016;19(6):626–631 17. Hinds PS, Drew D, Oakes LL, et al. Endof-life care preferences of pediatric patients with cancer. J Clin Oncol. 2005; 23(36):9146–9154 18. Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Hope and prognostic disclosure. J Clin Oncol. 2007;25(35):5636–5642 19. Farber JG, Prieur MG, Roach C, et al. Difficult conversations: discussing prognosis with children with cystic fibrosis. Pediatr Pulmonol. 2018;53(5): 592–598 20. Feudtner C, Carroll KW, Hexem KR, Silberman J, Kang TI, Kazak AE. Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study. Arch Pediatr Adolesc Med. 2010;164(9): 831–839 21. van Gurp J, Hasselaar J, van Leeuwen E, van Selm M, Vissers K. Attending to the Suffering Other: A Case Study of Teleconsultation in Palliative Care at Home. In: MacLeod RD, Van den Block L, eds. Textbook of Palliative Care. Cham, Switzerland: Springer International Publishing; 2018:1–17 22. van Gurp J, Hasselaar J, van Leeuwen E, Hoek P, Vissers K, van Selm M. Connecting with patients and instilling realism in an era of emerging communication possibilities: a review

PEDIATRICS Volume 146, number 1, July 2020

5

Downloaded from http://publications.aap.org/pediatrics/article-pdf/146/1/e20201163/1079701/peds_20201163.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

125

on palliative care communication heading to telecare practice. Patient Educ Couns. 2013;93(3): 504–514 23. Bonsignore L, Bloom N, Steinhauser K, et al. Evaluating the feasibility and acceptability of a telehealth program in a rural palliative care population:

TapCloud for palliative care. J Pain Symptom Manage. 2018;56(1):7–14 24. Gordon EJ, Hamric AB. The courage to stand up: the cultural politics of nurses’ access to ethics consultation. J Clin Ethics. 2006;17(3):231–254 25. Abecassis L, DeCourcey D, Richards T, Steadman J, Friedson J. Making the

6

26. Jansen MA, Schlapbach LJ, Irving H. Evaluation of a paediatric clinical ethics service. J Paediatr Child Health. 2018; 54(11):1199–1205

EVANS et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/146/1/e20201163/1079701/peds_20201163.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

126

best of a bad situation: clinician’s perspectives on ethics rounds. Pediatrics. 2019;144(2 Meeting Abstract):384

PEDIATRIC COLLECTIONS

When a Family Requests a White When a Family Requests a White Doctor Doctor b L. Reynolds, MDD.a, Cowden, John D. Cowden, MDb,P.Jeffrey Brosco, PhDD.a, Lantos, John D. MD Lantos, MDb KimberlyKimberly L. Reynolds, MDa, John MDb, Jeffrey Brosco,P. MD, PhDaMD, , John

abstract abstract

sometimes a doctor of a particular or ethnic ParentsParents sometimes requestrequest that a that doctor of a particular race orrace ethnic group group not care for their child. Such requests sometimes seem legitimate and other not care for their child. Such requests sometimes seem legitimate and other times seem offensive. The difference reflects a clash of fundamental times seem offensive. The difference reflects a clash of fundamental values.values. Generally, try to respect or parental preferences. Requests based on Generally, we trywe to respect patientpatient or parental preferences. Requests based on racist attitudes, however, notworthy seem worthy of respect. But where we racist attitudes, however, do notdo seem of respect. But where shouldshould we draw theInline? this ethics we present a situation in which draw the line? thisInethics rounds,rounds, we present a situation in which parentsparents requested white doctor and analyze the in ways in which requested a whitea doctor and analyze the ways which doctorsdoctors might might think think and respond a request. about about and respond to suchtoasuch request.

Some ethical dilemmas arise when Medicine. Medicine. Her research on Some ethical dilemmas arise when Her research focusesfocuses on historically underserved populations. is aofclash of fundamental historically underserved populations. there isthere a clash fundamental moral moral Dr Brosco is a pediatrician, historian, principles. Discrimination Dr Brosco is a pediatrician, historian, principles. Discrimination in the in the and of Chair the Pediatric Bioethics workplace theofbasis of gender, and Chair the of Pediatric Bioethics workplace on the on basis gender, race, race, Committee at Children’s Holtz Children’s skiniscolor is simply at Holtz or skinorcolor simply wrong.wrong. But it But itCommittee Hospital (Jackson Systems) is also wrong not to respect patients’ Hospital (Jackson Health Health Systems) is also wrong not to respect patients’ in Miami. and parents’ right to choose their in Miami. and parents’ right to choose their physician. What,should then, should physician. What, then, we do, we if, do, if, a a as sometimes happens, Department of Pediatrics, Miami, Miami, as sometimes happens, parentsparents want want THE CASE Department of Pediatrics, University University of Miami, of Miami, THE CASE b Florida; and sbChildren’ s MercyKansas Hospital, Kansas City, Florida; and Children’ Mercy Hospital, City, to choose their physician the basis to choose their physician on the on basis Dr Angela Rowe is a third-year Dr Angela Rowe is a third-year Missouri Missouri of the physician’s of the physician’s gender,gender, race, orrace, or pediatrics resident on her emergency pediatrics resident on her emergency Dr Reynolds had the idea original idea helped for and helped ethnicity? we uphold the had the original for and ethnicity? ShouldShould we uphold the medicine rotation. This particular Dr Reynolds medicine rotation. This particular conceptualize thecontributed article, contributed conceptualize the article, to the to the principle of nondiscrimination? Or principle of nondiscrimination? Or emergency department very busy,manuscript, manuscript, and reviewed final manuscript; emergency department is veryisbusy, and reviewed the final the manuscript; we uphold the principle of shouldshould we uphold the principle of Drs Brosco, Cowden,and Brosco, and Lantosconceptualize helped conceptualize Drhas Rowe hasonbeen feet most Drs Cowden, Lantos helped and Drand Rowe been her on feether most parental rights to choose their child’s parental rights to choose their child’s thecontributed article, contributed to the manuscript, and to the manuscript, and of the Approaching night. Approaching midnight, the article, of the night. midnight, in a diverse, pluralistic, the final manuscript; and all authors doctor?doctor? We liveWe in alive diverse, pluralistic, reviewed reviewed the final manuscript; and all authors she walks into her next patient’s room she walks into her next patient’s room the final manuscript as submitted. approvedapproved the final manuscript as submitted. and culturally complex and culturally complex societysociety where where anda sees a well-appearing 3-year-old and sees well-appearing 3-year-old some people’s values, lifestyles, www.pediatrics.org/cgi/doi/10.1542/peds.2014-2092 some people’s values, lifestyles, little girl, a woman, and aShe man. She www.pediatrics.org/cgi/doi/10.1542/peds.2014-2092 little girl, a woman, and a man. or words other people. choices,choices, or words offend offend other people. DOI: 10.1542/peds.2014-2092 and greets them, “Good DOI: 10.1542/peds.2014-2092 smiles smiles and greets them, “Good eveningevening this Ethics Rounds, we present In this In Ethics Rounds, we present everyone. Dr Rowe, the resident for publication Nov 7, 2014 everyone. I am DrI am Rowe, the resident AcceptedAccepted for publication Nov 7, 2014 in which a family requested to a case aincase which a family requested to who be taking you this who will bewill taking care ofcare you of this Address correspondence to Lantos, John D.MD, Lantos, MD, Address correspondence to John D. be treated by someone otheranthan an be treated by someone other than evening. Are the mother s Mercy Hospital, 2401 Rd, Gillham Rd, Kansas evening. Are you theyou mother and and Children’sChildren’ Mercy Hospital, 2401 Gillham Kansas African-American pediatrician. African-American pediatrician. City, MOE-mail: [email protected] E-mail: [email protected] The parents father?”father?” The parents nod. Asnod. she As she City, MO 64108. Comments are provided by Comments are provided by typically to abegin visit, she PEDIATRICS typically does todoes begin visit, ashe PEDIATRICS (ISSN Numbers: Print, 0031-4005; (ISSN Numbers: Print, 0031-4005; Online, Online, pediatricians Kimberly Reynolds pediatricians Kimberly Reynolds and and down to engage the 3-year-old 1098-4275). kneels kneels down to engage the 3-year-old 1098-4275). the University of patient,patient, Jeffrey Jeffrey BroscoBrosco of the of University of is cowering who iswho cowering on her on her © the 2015American by the American of CopyrightCopyright © 2015 by Academy Academy of Miami and by John Cowden, a general mother’s lap. Before she istoable to PediatricsPediatrics Miami and by John Cowden, a general mother’s lap. Before she is able pediatrician and Medical Director of herfor hand for a5,” “high pediatrician and Medical Director of stretchstretch out herout hand a “high the 5,” the DISCLOSURE: The have authors have indicated FINANCIALFINANCIAL DISCLOSURE: The authors indicated the of Office of Equity and Diversity patient’s patient’s dadquietly, says quietly, “I’m sorry.they havethey the Office Equity and Diversity have no financial relationships relevant dad says “I’m sorry. no financial relationships relevant to this to this to disclose. at Children’s Hospital in not my touch my daughter. article toarticle disclose. at Children’s Mercy Mercy Hospital in Please Please do not do touch daughter. We We Dr Reynolds is a general a different KansasKansas City. DrCity. Reynolds is a general No funding. external funding. would would prefer prefer a different doctor.”doctor.” FUNDING:FUNDING: No external pediatrician completing an academic Dr is Rowe taken initially, aback initially, pediatrician completing an academic Dr Rowe takenis aback but butPOTENTIALPOTENTIAL OF INTEREST: The have authors have CONFLICTCONFLICT OF INTEREST: The authors primary care fellowship she figures therebe must be a religiousindicatedindicated primary care fellowship at the at the she figures there must a religious have no potential they havethey no potential conflicts conflicts of interestof interest or cultural thatprefer they prefer ato disclose. to disclose. University of Miami of or cultural reason reason that they a University of Miami Miller Miller School School of

PEDIATRICS Volume 136, 2, number August 2015 PEDIATRICS Volume 136, number August2,2015

ROUNDS ETHICSETHICS ROUNDS

Downloaded from http://publications.aap.org/pediatrics/article-pdf/136/2/381/919581/peds_2014-2092.pdf oaded from http://publications.aap.org/pediatrics/article-pdf/136/2/381/919581/peds_2014-2092.pdf by Academy American of Academy of Pediatrics, William Larkin erican Pediatrics, William Larkin on 26 August 2022 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

127

male provider over a female one. “May I ask why?” she states in a calm voice, to confirm her suspicion. “We want a white doctor,” the father states calmly. Fearing she misheard him, Dr Rowe asks, “Excuse me?” The father reiterated: “We would like a white doctor, please.” The father remains calm and is even pleasant. Dr Rowe stumbles backward, bewildered and dumbfounded, and mumbles, “I’ll be back in a minute.” She steps out of the room to collect her thoughts. She sees her attending, Dr Lowry, standing nearby, so she walks over and tells him the situation. What should Dr Lowry do?

DR REYNOLDS COMMENTS Such a request for a white physician cannot be evaluated without taking into account the history of racial relations in American medicine. In 2008, the American Medical Association (AMA) apologized for its history of discrimination against black physicians.1 The apology came after more than a century of discriminatory practices. In 1870, the organization refused to seat 2 black delegates at its annual meeting. Subsequently, a series of policies were enacted that marginalized black physicians and worked to deny them access to membership in the AMA. Black physicians across the country counteracted the discrimination by forming the National Medical Association. Blacks were also banned from hospitals or forced to practicing in segregated wards. Black physicians responded by opening their own hospitals and medical schools; however, all but 2 of these schools (Meharry and Howard) were closed in 1910 as a result of the Flexner report, which was commissioned by the AMA. After the closing of black medical schools, the number of African-American physicians plummeted, because traditional medical schools in the Jim Crow era continued admitting blacks in low numbers.

Although Dr Rowe is likely too young to have lived through the era of explicit racism, some of the effects of this history persist: black physicians remain underrepresented in medicine.2 Black patients continue to encounter implicit and explicit forms of bias that contribute to health disparities.3 Black physicians are less likely than white physicians to hold leadership positions in hospitals and medical schools.4 Even today, the AMA, the American Hospital Association, and the American Academy of Pediatrics do not have explicit policies or practice guidelines outlining the appropriate steps to take when a patient makes a request for a physician of a certain race. The AMA does state in its opinion 9.123 that hostile language or acts of prejudice toward physicians “may constitute sufficient justification for the physician to arrange for the transfer of care.”5 But that opinion does not obviously apply to this situation. Dr Lowry’s honoring of this family’s request feels wrong. It seems to affirm the legitimacy of racist views. It may implicitly suggest that Dr Rowe is somehow less capable than her white peers. But there are a few good reasons why, perhaps, it should be honored. First, some would argue that honoring the request for a white physician is in accordance with the ethical principle of patient autonomy. It might also show cultural sensitivity. After all, when a female Muslim patient asks for a female physician, most physicians comply with ease and without debate. If a Spanishspeaking patient requests a Spanishspeaking physician, most would adhere to the request within reason (ie, the request doesn’t delay care, there is such a physician available, etc). Patients are usually more satisfied when they are cared for by a racially concordant physician.6 It seems inconsistent to value patient preferences in some contexts but not in others.

382

Dr Lowry could explain to Dr Rowe that she needs to deal with the issue on her own. He could coach her on what to say but ultimately leave the discussion with the family up to her. By using this approach, Dr Rowe will gain valuable experience in tackling a deeply troubling situation that will no doubt recur at some point in her career when she herself is the attending physician. The parents may also gain a level of respect for Dr Rowe that would be prized in the physician-patient-family dynamic and would assist in building a therapeutic alliance. Or, this method could fail miserably and create more distrust between the family and Dr Rowe. Alternatively, Dr Lowry could march into the room and firmly assert that Dr Rowe is a capable resident physician who will see the patient. This approach is what feels right: the unambiguous, egalitarian option in which the attending physician rights the wrong and the various parties move in step with his view without dissent. Should Dr Lowry go this route, he will be backed by the case law; health care practitioners have sued their employers who granted the race-based requests of patients in the past and have won their cases, as recently as 2010.7 Thus, Dr Lowry’s refusal to allow a white physician to take over care of the patient may be the appropriate course of action. On the other hand, this response squashes any further dialogue, whether positive or negative. This tactic also fails to fully address the perceived racism that led to this request. Furthermore, it opens the

REYNOLDS et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/136/2/381/919581/peds_2014-2092.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

128

However, granting the request for a white physician could potentially send a message to Dr Rowe that she is not good enough. It could reaffirm years of discrimination and racism against black physicians. If the hospital leadership goes along with the request, it may give the perception that honoring race-based physician requests is hospital policy, which is likely not the case.

PEDIATRIC COLLECTIONS

door to the resident physician performing poorly due to a stereotype threat. “Stereotype threat” refers to the anxiety that is created when a member of a particular group is confronted with the possibility of reinforcing a negative stereotype. The anxiety that is produced subsequently results in lower performance.8 On the other hand, if the family stayed and continued to receive care from Dr Rowe, she may feel empowered to care for the patient. But there may still be a tense family-physician dynamic due to the partially resolved nature of the conflict. Both Dr Rowe and the parents may feel that their voices were not heard in this scenario. This tension could lead to compromised care of the patient, which would not be in step with the ever-present edict to “do no harm.”

DR BROSCO COMMENTS Anger is nearly everyone’s immediate reaction to this case. How can parents express and act on racist views in a public setting to a caring professional who is trying to help their child? Then we stop and think. Doctors often must care for people whose beliefs or actions we find odious. Professionalism requires that we put our own feelings aside. We may disagree with the strict hierarchical relationship between men and women proffered by some religious groups, for example, but we would likely try to honor a request that a female patient be attended to by a female physician. Still, race-based requests feel different. Our nation’s long history of slavery and racism increases the emotional and ethical intensity of this case. Even if not familiar with specific examples, most people would readily acknowledge that racism is a painful thread in the history of medicine in the United States. Among other events, one thinks of the biological views of blacks that rationalized slavery in the 19th

century, the closing of black medical schools as part of Flexner era reforms in medical education in the early 20th century, the segregated hospital wards defined by Jim Crow laws through the mid-20th century, and the deception of black research subjects and withholding treatment during the Tuskegee syphilis experiments conducted by the US Public Health Service through the early 1970s. The legacy of this shameful history includes widespread distrust of the health care system by many African Americans, low representation of blacks among the health care professions, limited participation by minorities in research projects, and persistent disparities in health outcomes among racial/ethnic groups, related at least in part to ongoing discrimination in the US health care system. But how does that history help us decide an appropriate response to this case? Pursuing the best interests of the child is not a helpful guide. I assume that the child is not in any imminent danger and that other physicians are available. It is possible that adherence to treatment by the parents would increase if the advice came from a white physician. The most important person in this scenario is the pediatric resident. She is at the beginning of her career. Experiences like this will shape her as a professional. If the attending physician reinforces the negative stereotype by honoring it, she may come to believe that she is, in fact, inferior to her white colleagues. Selfperception affects quality of performance.9 The attending has a responsibility, as a teacher and mentor, to act in a way that will minimize the ill effects of blatant racism. He should do this by affirming Dr Rowe’s ability and encouraging her to complete the encounter. Some residents in this situation may be too angry or too hurt to want to continue. They should not be forced to do so. If

she is willing, then the attending and the resident should return together to the examination room and inform the family that Dr Rowe is a competent doctor and that, if they don’t want her to care for their child, they can seek care elsewhere. Health care professionals and the institutions they work in are moral actors. Sometimes the issues are explicitly ethical, such as end-of-life decisions or organ donation policies. Other times the moral nature of health care practice is implicit, such as how to treat indigent patients or unwed mothers. Health care professionals and institutions simply cannot be “value neutral.” In this case, they should not allow explicit racism to hold sway.

DR COWDEN COMMENTS Dr Lowry faces a request from a parent that challenges a central assumption in contemporary US society: that racial discrimination is wrong. Yet, he faces the request in the context of the patient-physician relationship, where ethical and legal responsibilities prohibit a physician from forcing unwanted care on a patient. Dr Lowry also must support a resident who feels confused and likely offended by an unexpected interaction. All the while, he has to manage any personal offense or distaste he might feel about the request and the family making it. How can he resolve these tensions and also tend to Dr Rowe’s emotional distress? Kimani Paul-Emile, Associate Professor of Law at Fordham University, examined the conflicts between medical ethics and antidiscrimination principles in her extensive article, “Patients’ Racial Preferences and the Medical Culture of Accommodation.”8 She calls patients’ routine refusal of care by physicians of a particular race “one of medicine’s open secrets” and cites evidence that hospitals often yield to these preferences. Her examples include the story, originally told by

PEDIATRICS Volume 136, number 2, August 2015

383

Downloaded from http://publications.aap.org/pediatrics/article-pdf/136/2/381/919581/peds_2014-2092.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

129

Kenneth Kipnis,10 of a Korean patient who refused potentially life-saving treatment out of fear of his Japanese physician team. This fear was based on historical mistrust, and after his request for a different care team was met, he accepted treatment and made a full recovery. The idea that we would allow patients to guide how they receive care comes from the ethical principle of respect for patient autonomy, which grounds the legal concept of informed consent. By placing the patient in control of care decisions, we respect the autonomy and integrity of the individual as a free agent. We protect patients against the threat of unwanted or poorly understood care by empowering them to refuse care or to refuse to be cared for by a particular physician. We follow patients’ preferences as a way of fulfilling the fiduciary responsibility at the heart of our profession: a commitment to serve patient interest and welfare above all. In addition to these ethical and professional obligations, the law of battery prohibits us from caring for patients against their will, because any unwanted touching of the patient’s body can be considered battery. All of these compel us, and Dr Lowry, to accommodate, if possible, the man’s wish to choose his child’s doctor on the basis of whatever criteria are of value to him. Despite this clear duty of the physician to abide by patient preference, if Dr Lowry reassigns Dr Rowe to another patient on the basis of her race, does he violate the law? Title VII of the Civil Rights Act of 1964 prohibits employers from assigning work on the basis of employee race. It specifically identifies customer preference as a generally invalid reason for such assignment. Paul-Emile argues that acceding to patients’ racial preferences falls outside the intended scope of Title VII due to several factors:

… the unique nature of the physicianpatient relationship, the fact that this relationship may be constitutionally protected, the significance of race in the therapeutic enterprise, the fact that the accommodation of patients’ racial preferences in the hospital setting does not appear to adversely affect physicians by race, and the evidence demonstrating that acceding to patients’ requests has been shown to increase patient satisfaction and improve care.8

Nevertheless, in this scenario, Dr Lowry must be sensitive to the difference between his decision about taking care of a patient whose parent wants someone of a different race and using his authority to make that decision for someone subordinate to him. But this case touches on something even deeper than medical ethics or law. A request such as the one made by this father triggers strong emotional reactions. The present scenario in which a person asked for a white doctor surely sparked an immediate narrative in the reader’s mind. What color skin do the parents have in your narrative? The scenario doesn’t specify their race. What if they are white? What do you assume to be their motive? What if the parents have dark skin? Do some requests deserve more respect than others? Why? A 2010 survey study of predominantly white, male emergency medicine physicians showed that patient characteristics affected how likely a physician was to accommodate patient requests on the basis of race, religion, and gender.11 Higher accommodation scores were given for nonwhite and Muslim patients. Muslim women had the highest scores across all combinations of characteristics. Provider characteristics mattered, too: female and nonwhite physicians were more likely to accommodate than were male and white physicians. In this case, Dr Lowry has options, but he must organize his actions around the ethical and legal

384

1. Dr Lowry should speak with the family alone. It is essential that Dr. Lowry understand more about the family’s request. Not only can he confirm or dispel his initial assumptions about their motive. He can also decide how critical this request is for the family. Is this a religious question? A race superiority issue? Will they accept care from a nonwhite doctor if a white doctor is not available? With this information, he will be in a much better position to decide what to do. 2. What Dr Lowry learns will affect what he says next, but standing up for the principles of the hospital and for Dr Rowe will be important. He might say, “It is not common practice at our hospital to match providers and patients based on race, as we are fully confident that all of our providers offer equally good care no matter what their race. Dr Rowe will take excellent care of your daughter.” It is not the role of Dr Lowry to defend societal values and teach the family a lesson on race relations. But making an unequivocal statement about Dr Rowe and the hospital’s principles avoids offering implicit agreement by saying nothing at all. 3. If there is sufficient staffing to avoid affecting the care of other patients, I believe that Dr Lowry should accommodate the family’s request. If there is not, he can explain to the family that it will not be possible to provide a white doctor. If they continue to refuse treatment, he can refer them to another emergency department, assuming the clinical issue is not urgent. If it is, he would find himself in a new ethical dilemma: when to remove decision-making capacity from the parent. Given an urgent situation, the hope is that

REYNOLDS et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/136/2/381/919581/peds_2014-2092.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

130

principles described above, not around emotional reactions to the challenge he faces. I would recommend the following:

PEDIATRIC COLLECTIONS

a respectful approach would be able to convince the family that it is in their daughter’s best interest to be cared for by Dr Rowe rather than have delayed care or no care at all. 4. It may be appropriate to call an ethics consult if the above approach is unsuccessful in reaching a clear decision and if the delay involved in calling the consult would not harm the child. 5. Finally, Dr Lowry must tend to Dr Rowe’s needs and discuss the situation with her to get her input and reactions. Racial interactions always will be accompanied by assumptions and emotions and may lead to anger, confusion, and frustration. In the hospital setting and within the special context of the patient-physician relationship, we have ethical and legal guideposts that help us through complicated encounters. It is essential that we rely on them. Although there is not (and should not be) a standard answer for every racebased patient request, the primacy of patient autonomy and our fiduciary duty require us to set aside any distaste we may have for our patients’ views. We have committed to caring for all patients with equal professionalism and quality no matter our opinion of them. We must have a very high threshold for denying a patient his or her preferred form of care, even when meeting a request causes us personal distress.

DR REYNOLDS COMMENTS I was Dr Rowe. The father’s request knocked the wind out of me. My initial gut reaction was the result of years of internalized pain at the marginalization of those who share my skin color. In my case, my white male attending swept to my rescue. He told the family that I was an excellent physician who would be treating them or else they could go elsewhere. I was comforted, relieved, still confused, and a little nervous.

Perhaps that wasn’t the approach that adequately addressed the racism. Perhaps it was not the approach that would allow me to grow as a clinician or the approach that is the most culturally competent. But in that moment, it was what I appreciated the most. The family agreed to let me care for the patient. I diagnosed her with otitis media and sent her home to continue treatment as an outpatient. The family remained cordial throughout the encounter and briefly thanked me before they left the emergency department. Physicians should not have to “go it alone” in high-stakes situations that can be fraught with tension, communication difficulties, and often anger and resentment. The American Academy of Pediatrics could help pediatricians deal with race-based requests by developing a policy statement that addresses race-based physician requests. Hospitals and other health care organizations must also develop policies regarding racebased requests. In an increasingly diverse country that will consist of majority-minority by 2050, we must tackle issues related to race, prejudice, and discrimination head on.

JOHN D. LANTOS COMMENTS Toni Morrison once wrote, “I always looked upon the acts of racist exclusion, or insult, as pitiable, for the other person. I never absorbed that. I always thought that there was something deficient about such people.”12 Parents who refuse medical care for their child because they don’t like the color of the doctor’s skin are deficient in just the way Morrison suggests. Yet, as noted above, patient preferences for particular physicians exist along a spectrum of justifiability. Deciding whether to honor those requests requires nuanced ethical judgment. Such requests are most understandable and justifiable when they reflect personal experiences of

racism or discrimination. Thus, the fears of the Korean patient are rooted in personal history and are thus understandable and not blatantly discriminatory. The same might be true for a Holocaust survivor with a German physician. Requests are least justifiable when they are based in prejudicial attitudes about a certain ethnic or racial group in the absence of any such personal experience. In this case, we assume that the father’s request is not based on the father’s personal experiences of bad treatment at the hands of African Americans but is, instead, rooted in plain old-fashioned racism. Lumping the 2 motivations together and seeing both as simply expressions of parental preferences that deserve equal respect ignores ethically relevant features of the situations. Reasons and motives matter. Some patient preferences are more ethically justifiable than others. A parental request for a different physician that is based only on the color of their doctor’s skin needn’t be honored. Such parents may be informed that such requests will not be honored. They should be informed that they are free to seek care elsewhere. When offered such a choice, as in this case, most parents will gratefully accept good medical care for their child. The parents, the child, and the doctors will all be better off as a result. REFERENCES 1. Davis RM. Achieving racial harmony for the benefit of patients and communities: contrition, reconciliation, and collaboration. JAMA. 2008;300(3): 323–325 2. Nelson A. Unequal treatment: confronting racial and ethnic disparities in health care. J Natl Med Assoc. 2002;94(8): 666–668 3. Smedley BD, Stith AY, Nelson AR. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care [with CD]. Washington, DC: National Academies Press; 2009

PEDIATRICS Volume 136, number 2, August 2015

385

Downloaded from http://publications.aap.org/pediatrics/article-pdf/136/2/381/919581/peds_2014-2092.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

Ethics Rounds: A Casebook in Pediatric Bioethics Part II

131

4. Price EG, Gozu A, Kern DE, et al. The role of cultural diversity climate in recruitment, promotion, and retention of faculty in academic medicine. J Gen Intern Med. 2005;20(7):565–571 5. American Medical Association. Opinion 9.123: disrespect and derogatory conduct in the patient-physician relationship. Updated 2003. Available at: www.ama-assn.org/ama/pub/physicianresources/medical-ethics/code-medicalethics/opinion9123.page. Accessed September 2, 2014 6. Cooper LA, Roter DL, Johnson RL, Ford DE, Steinwachs DM, Powe NR. Patientcentered communication, ratings of care, and concordance of patient and

physician race. Ann Intern Med. 2003; 139(11):907–915 7. Chaney v Plainfield Healthcare Center, 612 F3d 908 (7th Cir 2010). Available at: http://trace.tennessee.edu/cgi/ viewcontent.cgi?article=1006& context=rgsj Accessed September 7, 2014 8. Paul-Emile K. Patient racial preferences and the medical culture of accommodation. UCLA Law Rev. 2012;60: 462–504. Available at: http://www. uclalawreview.org/patients%E2%80%99racial-preferences-and-the-medicalculture-of-accommodation. PDF available at: http://www.uclalawreview.org/pdf/602-3.pdf

9. Steele CM, Aronson J. Stereotype threat and the intellectual test performance of African Americans. J Pers Soc Psychol. 1995;69(5):797–811 10. Capozzi JD, Rhodes R. Coping with racism in a patient. J Bone Joint Surg. 2006;88:2543–2544 11. Padela AI, Schneider SM, He H, Ali Z, Richardson TM. Patient choice of provider type in the emergency department: perceptions and factors relating to accommodation of requests for care providers. Emerg Med J. 2010;27(6):465–469 12. Morrison T. Good reads. Available at: https://www.goodreads.com/author/quotes/ 3534.Toni_Morrison?page=4. Accessed July 3, 2014

A NEW WAY TO TIE A KNOT: I have quite an extensive collection of neckties including my own and those that my father gave me. Over the past two years, however, I have worn a necktie at work less frequently. The hospital and university are supportive of casual attire. I still wear ties a couple of days each week and on most days during the winter months. Recently, however, I was in a meeting with a faculty neurologist (who is from England) and his necktie caught my attention. While the tie was a lovely shade of pink, what was really striking was the knot. I had never seen a knot like it before. When I asked him about it, he replied that it was an Eldredge knot. As reported in The New York Times (Men’s Style: June 10, 2015), neckties have an interesting place in a man’s wardrobe. They represent great sartorial freedom, yet are associated with work and a desk job. While I have a tendency to accessorize with unusual patterns or colors in my neckties, it turns out that one can tie the knot in myriad ways. Last year, a group of mathematicians announced that there are 177,000 ways to tie a necktie. While that may be true, the number used is much less. In 1999, a book was published detailing 85 ways to tie a necktie. An internet search turns up a number of sites detailing anywhere from 15 to 30 common ways to tie a necktie. These range from simple three- and four-step knots (such as the Oriental and classic four-in-hand) to much more complex knots (like the nine-move Balthus, named after an artist in the 1930s). According to one website, the Eldredge was designed in 2007 by Jeffery Eldredge, a system analyst working in a tie-mandatory workplace who was tired of using the classic four-in-hand. The eye catching knot is large, involves 15 steps, creates a tapered fishtail braid-like effect, and is definitely not for the faint of heart or sartorially cautious. While I have learned a great deal about knot-tying and am impressed by my friend the neurologist, I think I will keep it simple and stick with the “four-in-hand” knot for now. Noted by WVR, MD

386

REYNOLDS et al

Downloaded from http://publications.aap.org/pediatrics/article-pdf/136/2/381/919581/peds_2014-2092.pdf by American Academy of Pediatrics, William Larkin on 26 August 2022

132

PEDIATRIC COLLECTIONS

Off-Label Prescription COVID-19 Off-Label Prescription of of COVID-19 Vaccines Children: Clinical, Ethical, Vaccines in in Children: Clinical, Ethical, and Legal Issues and Legal Issues a,b MBE,a,b Timothy K. Knilans, c d,e E. deSante-Bertkau, MD,a,b Persad, Govind Persad, PhD,c Patricia Zettler, JD,d,e JenniferJennifer E. deSante-Bertkau, MD, MBE,MD, Timothy K. Knilans, MD,a,b Govind JD, PhD,JD, Patricia J. Zettler,J. JD, f f a,b PhDa,b Holly Fernandez Lynch, JD, MBE, Armand H. Matheny Antommaria, MD, Holly Fernandez Lynch, JD, MBE, Armand H. Matheny Antommaria, MD, PhD

abstract abstract

USand Food andAdministration Drug Administration approval the biologics The USThe Food Drug (FDA) (FDA) approval of the of biologics licenselicense application for the Pfizer-BioNTech coronavirus disease 2019 vaccine application for the Pfizer-BioNTech coronavirus disease 2019 vaccine (Comirnaty) on August 23, 2021, opened theto door the off-label vaccination (Comirnaty) on August 23, 2021, opened the door the to off-label vaccination of children younger than the age range currently covered by either of children younger than the age range currently covered by either the the biologics application (16 old years old and older) the emergency biologics licenselicense application (16 years and older) or the or emergency use use authorization to 15 old). yearsAlthough old). Although prescribing medications at doses, authorization (12 to(12 15 years prescribing medications at doses, for conditions, or in populations otherthose than approved those approved theisFDA is for conditions, or in populations other than by theby FDA generally legal is common in pediatrics, thethe FDA, the Centers for Disease generally legal and is and common in pediatrics, the FDA, Centers for Disease a and Prevention, the American Academy of Pediatrics a ControlControl and Prevention, and theand American Academy of Pediatrics have have HospitalCenter, Medical Center, Cincinnati, CincinnatiCincinnati Children’sChildren’ HospitalsMedical Cincinnati, b Ohio;ofbCollege of Medicine, of Cincinnati, Medicine, UniversityUniversity of Cincinnati, recommended off-label prescription of the coronavirus recommended againstagainst off-label prescription of the coronavirus diseasedisease 2019 2019 Ohio; College c Ohio; Sturm of Law, University of Cincinnati,Cincinnati, Ohio; cSturm College ofCollege Law, University of d vaccine. commentaries consider in which parents askchild’s their child’sDenver, d vaccine. SeveralSeveral commentaries consider a case aincase which parents ask their Moritz of Law; eJames Denver,Colorado; Denver, Colorado; Moritz College ofCollege Law; eJames Denver, Comprehensive Cancer The Ohio State University, pediatrician to prescribe the vaccine for11-year-old their 11-year-old with special Comprehensive Cancer Center, TheCenter, Ohio State University, pediatrician to prescribe the vaccine for their with special health health care care f and fPerelman School of Medicine, Ohio; and Ohio; Perelman School of Medicine, approval or authorization age group. The first commentary Columbus,Columbus, needs needs beforebefore approval or authorization in her in ageher group. The first commentary of Pennsylvania, Philadelphia, Pennsylvania UniversityUniversity of Pennsylvania, Philadelphia, Pennsylvania considers the potential benefits andtorisks the patient, as to the family, considers the potential benefits and risks the to patient, as wellasaswell to the family, Dr Antommaria conceptualized, and Dr Antommaria conceptualized, designed, designed, reviewed, reviewed, and the provider, and society, emphasizing the unknown in younger patients the provider, and society, emphasizing the unknown risks inrisks younger patients and and revised the manuscript andthe drafted the abstract, revised the manuscript and drafted abstract, introduction, and his commentary; Drs deSantecase, andcase, his commentary; Drs deSantethefor need for adequate informed consent. The second commentary describes an introduction, the need adequate informed consent. The second commentary describes an Bertkau andand Knilans, and Profdesigned, Persad designed, Bertkau and Knilans, Prof Persad drafted, drafted, algorithm and principles for evaluating off-label prescribing and argues that the andtheir revised their respective commentaries algorithm and principles for evaluating off-label prescribing and argues that the reviewed, reviewed, and revised respective commentaries and reviewed andthe revised the abstract, introduction, and reviewed and revised abstract, introduction, benefits of prescribing Comirnaty offtolabel to children