Ethical Issues Raised by the Media Portrayal of Adolescent Transplant Refusals Lainie Friedman Ross, MD, Phd

Ethical Issues Raised by the Media Portrayal of Adolescent Transplant Refusals Lainie Friedman Ross, MD, PhD Cases of adolescents in organ failure who refuse solid organ transplant are not common, but abstract several have been discussed in the media in the United States and the United Kingdom. Using the framework developed by Buchanan and Brock for surrogate decision-making, I examine what role the adolescent should morally play when deciding about therapy for life-threatening conditions. I argue that the greater the efficacy of treatment, the less voice the adolescent (and the parent) should have. I then consider how refusals of highly effective transplant cases are similar to and different from refusals of other lifesaving therapies (eg, chemotherapy for leukemia), which is more commonly discussed in the media and medical literature. I examine whether organ scarcity and the need for lifelong immunosuppression justify differences in whether the state intervenes when an adolescent and his or her parents refuse a transplant. I argue that the state, as parens patriae, has an obligation to provide the social supports needed for a successful transplant and follow-up treatment plan, although family refusals may be permissible when the transplant is experimental or of low efficacy because of comorbidities or other factors. I conclude by discussing the need to limit media coverage of pediatric treatment refusals. Departments of Pediatrics, Medicine, and Surgery, University of Chicago, Chicago, Illinois Dr Ross conceptualized and designed the study, drafted the initial manuscript, and approved the final manuscript as submitted. DOI: https://doi.org/10.1542/peds.2020-0818H Accepted for publication May 18, 2020 Address correspondence to Lainie Friedman Ross, MD, PhD, Department of Pediatrics, University of Chicago, 5841 S Maryland Ave, MC 6082, Chicago, IL 60637. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2020 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: The author has indicated she has no financial relationships relevant to this article to disclose. FUNDING: No external funding. POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose. Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 146, number s1, August 2020:e20200818H SUPPLEMENT ARTICLE – Children have been at the forefront of Benito’s second liver was failing. He media reports18 21), although the size solid organ transplant since its stopped his immunosuppression of the iceberg remains unknown. inception. Three years after the first because of painful side effects. It is suggested in anecdotes from successful kidney transplant between Although his mother and siblings colleagues that organ refusals by identical twin adults (1954),1 Murray tried to convince him to take his teenagers do occur, and their health and co-workers sought permission medicines and get relisted, he care teams spend hours negotiating from the Massachusetts Superior refused. Florida child protective with these teenagers and their Judicial Court to perform kidney services forcibly took him to the parents outside of the media glare. transplant between identical twin hospital to make him take his minor pairs who were aged 14, 14, immunosuppressive medications, PEDIATRIC DECISION-MAKING and 19 at a time when the age of but a Florida court ruled that he – majority was 21 years. 2 4 In each could return home off therapy.7,8 How should physicians respond to case, the parent(s) consented to the He died 2 months later.9 pediatric refusals of lifesaving healthy twin’s donation of a kidney treatment? Buchanan and Brock22 for his or her identical twin in kidney In 2008, Hannah Jones, a 13-year-old developed a framework for surrogate ’ British teenager, refused a heart decision-making on the basis of 4 failure. Although the court s focus 10 was on finding that donation was in transplant. She had been treated for principles: (1) ethical values principle the healthy twin’s best interest, the leukemia at age 4, but the treatment (what are the underlying ethical court also noted that both the healthy had irreversibly weakened her heart. values?), (2) guidance principle (what twin and the twin in organ failure Her parents supported her decision principle[s] should guide parental gave their (nonbinding) consent to and child protective services ruled decision-making?), (3) authority the medical intervention.2–4 her mature (what is known in principle (who is the appropriate the United Kingdom as Gillick decision-maker?), and (4) I have discussed the ethical issues 11 competent ), resulting in her intervention principle (when should raised by the minor as solid organ ’ doctors decision not to pursue court the state intervene?). Below, I donor,5,6 and in this article, I focus 12 authorization. However, in 2009, consider each principle for pediatric exclusively on the adolescent as solid Hannah changed her mind, was listed, patients. organ transplant candidate. I begin and a donor heart was successfully by describing several cases of transplanted.13 In July 2017, she In pediatrics, parents are presumed adolescents in organ failure who graduated college.14 to be the decision-makers for their refused solid organ transplant children (authority principle). The discussed in the media in the United In 2011, Courtney Montgomery of underlying ethical values principles States or the United Kingdom. I North Carolina, aged 16, refused include well-being and self- provide a framework for pediatric a heart transplant for hypertrophic determination with greater focus decision-making and examine how cardiomyopathy that was diagnosed being placed on well-being for the efficacy of the therapy changes when she was 8 years old. Duke children. In pediatrics, Buchanan and the ethics of refusals. I then consider physicians arranged for her to meet Brock22 add a third ethical value: the unique ethical issues that with Josh Winstead, a 17-year-old parental interests. They include lifesaving transplant cases raise by heart transplant recipient. He parental interests because of the exploring how they are similar to and convinced her to be listed, took her to importance of the family as an different from refusals of cancer his prom, and she had a successful institution and argue that within the 15 treatment by adolescents and their heart transplant a few weeks later. family, parents must have the privacy parents. I conclude by discussing the Unfortunately, she had a cardiac and freedom to raise their children need to limit media coverage of arrest during a catherization a year according to their own values, pediatric treatment refusals. later and was placed on knowing that they will bear the extracorporeal membrane consequences of these decisions.22 oxygenation for 3 weeks. She had ADOLESCENT TRANSPLANT REFUSALS a rough course and spent a lot of time In most policy statements about “ ” IN THE NEWS at the hospital, becoming the first children, the best interests standard is declared the appropriate guidance Several adolescent transplant refusals graduate of its educational 23–30 16 principle. There is also have garnered broad media attention. program. Now, at age 24 years, she consensus, at least in the United Consider the following 3 cases. is in need of another heart but is ambivalent about relisting.17 States, that parental decisions must Benito Agrelo was born with an fall below some harm threshold enlarged liver and required a liver These anecdotes represent the tip of before the state should intervene transplant at age 7. In 1994, at age 15, the iceberg (see Table 1 for other (intervention principle).22,31,32 One Downloaded from www.aappublications.org/news by guest on October 1, 2021 S34 ROSS problem is the wide gap between what is best (guidance principle) and what is harmful (intervention principle). The solution proposed by Buchanan and Brock22 is to acknowledge that as a guidance Outcome principle, the best interests standard “serve[s] only as a regulative court ruling; transplant done; no further follow-up available transplant; dies in 3 mo transplanted; doing well transplanted; doing poorly ideal, not as a strict and literal 22 Goes untreated; not listed for third Changes her mind; heart is requirement," meaning that parental decisions that are not best but merely good enough fall within a gray zone (known as the “zone of parental discretion”) and go s decision ’ unchallenged.33–36 Parental Support support for her son refusal Mother expresses Parents support her Mother supports her Changes her mind; heart is Mother consented Supposedly, she assented after DECISION-MAKING ABOUT LIFESAVING TREATMENT: THE ROLE OF THE CHILD When the patient is a young toddler, Cause parents act as surrogate decision- makers, but as Buchanan and Brock22 Benny becomes noncompliant treatment cardiomyopathy “ Congenital abnormality Parents support him Refuses transplant; no follow-up noted, the presumption that all minors are incompetent for health care decision-making is difficult to ”22 Type of defend. What role, then, should the lung Transplant mature adolescent play in health care decision-making? Involved Yes Liver Liver failing and then Most social scientists and theorists who support adolescent decision- making point to empirical data that reveal that older adolescents make Location Court similar decisions when compared with their adult counterparts.37,38 United Kingdom No Heart-lung Genetic heart

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