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 condition Parents supported Died at age 19 y Florida North Carolina No Heart Hypertrophic United Kingdom Yes Heart Heart failure Some argue that adolescents should be empowered to consent to treatment by themselves,39–42 citing 12)

Coverage, y mature minor statutes. However, Age at Media Coleman and Rosoff,43 a lawyer and a pediatrician, respectively, explain or that mature minor statutes are often Ethnicity misconstrued: they were meant to empower adolescents to consent to Sex Race and/ treatment in limited situations, not to apply more generally to treatment refusals.43 That is, adolescents have 2009 Female White 13 United Kingdom No Heart Secondary to cancer

– the right to say yes to certain Attention Year of Media 19941999 Male Hispanic2007 16 Female Unknown2008 15 Female2011 White2006 19 and 2013 (refused at Male Female Black White 16 11 and 18 United Kingdom No Heart, heart- treatments but do not necessarily

17 have the right to say no. Another – 19 9

15 44 – 10,13,14

7 lawyer, Penkower, explains that 20,21 mature minor policies are less about Cases of Adolescent Refusals of Organ Transplant in the Media respect for adolescent self- Montgomery Gawthorpe

18 determination and more about Hannah Jones Joanne Vincent Name M Courtney Liam Benito Agrelo

TABLE 1 promoting their well-being:

Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 146, number s1, August 2020 S35 Mature minor statutes do not afford long-term risks and benefits.35,47 treated no differently than parental adolescents a right to access for the Greater focus on physical appearance refusals (box 3) and that the court sake of expanding their rights in the and peer acceptance may result in should mandate treatment.48 If health care context, but the courts have only extended the right to access where nonadherence to lifesaving parental involvement is necessary it is in adolescents’ best interests to do immunosuppression because of side and not forthcoming (box 3), the so. The minor is never free from an effects (eg, loss of hair, hirsutism, or teenager can be placed in medical inquiry as to what is in his or her best acne).37 foster care. Although the ethical interests. Courts will not even embark argument is the same for box 4, it on a maturity evaluation unless Even if adolescents should not have fi becomes harder to force treatment if a nding of maturity will in some way sole decision-making authority, we serve the best interests of the minor.44 the teenager’s active participation is still need to determine what role, if necessary. In the actual clinic, it may Similar misunderstandings occur in any, they should play in their own raise the questions regarding how the United Kingdom where the health care decision-making. In an much time and how many resources “ concept of Gillick competence article entitled Against the Tide: one may morally spend to do the right empowers adolescents aged 16 years Arguments Against Respecting thing (and whether this calculus will ’ fi and older to consent to treatment but a Minor s Refusal of Ef cacious Life- change when the resources are not necessarily to refuse. Brierley and Saving Treatment,”48 I examined and 45 a scarce resource like an organ), Larcher explain: labeled the 4 possible outcomes of which will be discussed below. Post Gillick, it was a common involving both parents and professional assumption that a Gillick- adolescents in decision-making for In the framework of Table 3, competent child’s refusal was as lifesaving condition (see Table 2).48 physicians are supported in treating … equally valid as his or her consent Tables 3 and 4 are used to describe minors when it is in the minor’s best However, a distinction was drawn interest (effective lifesaving between the power of determination the possible outcomes when the (veto) and that of consent, so that in treatment is highly effective (Table 3) treatment) regardless of what the essence those with parental and when it is less effective or parent or minor says. For some, this is 41,49,50 responsibility—including Courts—had experimental (Table 4).48 Let us unsatisfactorily paternalistic, authority to override the refusal of examine each in turn. although the doctrine of parens a Gillick-competent child, if it was in his patriae empowers the state to step in or her best interests to do so.45 In Table 3, when both the parents and and serve as a guardian for minors to The argument to justify limiting child agree to treatment (box 1: promote their well-being, which adolescent autonomy is threefold. family consent), physicians provide supersedes respect for their First, it ignores the rights and treatment because there is consensus developing self-determination.48 responsibilities that parents have to that treatment promotes the child’s This does not mean that physicians make decisions on their child’s behalf well-being. When the parents want should always argue to force and their interest in doing so.22,35 the child to be treated, but the child treatment nor that the state should Second, although adolescents may refuses (box 2: adolescent refusal), always empower them to do so. have the cognitive ability to make physicians provide treatment because Parental decisions should only be decisions, whether they actually use only parental permission is needed to challenged by the state when these their knowledge is a different story.46 authorize effective lifesaving decisions fall below a harm threshold. The empirical studies used to support treatment of a child. This does not When the treatment is experimental, equivalent decision-making skills by mean that the physician or parents then by definition it is unknown adolescents and adults were pen-and- should ignore the child. Reasons for whether the benefits outweigh the paper surveys conducted in neutral refusal should be discussed and risks, and greater parental discretion laboratory settings devoid of the attempts made to get the adolescent’s is permitted (see Table 4). Thus, psychosocial and emotional context in assent, but in the end, if parents when treatment is of low efficacy or which medical decisions are made. authorize treatment, physicians experimental, physicians should treat Given our evolving understanding of provide treatment either with (box 1) with family consent (box 1), but if the the adolescent brain, these studies or without (box 2) the adolescent’s parents refuse to authorize treatment “fail to establish whether those assent. (boxes 3 and 4), the adolescent capacities would be exercised When parents refuse to authorize should not be treated, even if he or similarly in a health care crisis.”46 effective lifesaving treatment (boxes 3 she would want treatment (box 3). Third, adolescent decisions are based and 4), then the parents’ decision is However, if the treatment is of on limited world experience and are neglectful, and state intervention is questionable efficacy and the parents often focused on short-term risks and sought. I have previously argued that authorize treatment, the child’s benefits without consideration of family refusals (box 4) should be dissent may be more or less

Downloaded from www.aappublications.org/news by guest on October 1, 2021 S36 ROSS TABLE 2 Decision-making With and on Behalf of Children for example, 17-year-old Cassandra Minor’s Preferences Callender who was literally kept Yes No under police guard at a Hartford Hospital because she and her mother Parents’ preferences Yes Box 1: family consent Box 2: adolescent refusal refused lifesaving chemotherapy for 56,57 No Box 3: parental refusal Box 4: family refusal her highly curable cancer. Reprinted with permission from Table 3 in Ross LF. Against the tide: arguments against respecting a minor’s refusal of Although many ethicists who were efficacious life-saving treatment. Camb Q Healthc Ethics.2009;18(3):305. interviewed agreed with the court’s decision,58 the teenager considered herself a “hostage.”57 The need for compelling (box 2) depending on the Two major differences exist, however, lifelong immunosuppression could child’s maturity, the likelihood of between most lifesaving treatments require long-term involuntary efficacy, and other factors, including, (like chemotherapy for cancer) and treatment and/or out-of-home for example, in the case of human organ transplant that have been placement until adulthood. subjects research, whether the proposed to justify differences in Nonadherence is the most common institutional review board has stated whether the state should intervene. cause of graft loss and mortality in that the child’s active assent must be The first difference is that transplant 51 transplant recipient of all age obtained. involves a scarce resource. This raises – groups.59 62 However, medication the question of the responsibilities The difference then between Tables 3 nonadherence is .4 times greater in that physicians have to their patients and 4 is the efficacy of the treatment, adolescents than in adults.59 An but also to the wider community. To which impacts the degree of parental adolescent who refuses organ promote transplant efficiency, adult discretion and the role of the transplant may be at even greater risk transplant candidates must prove adolescent. of nonadherence. Thus, even if state their ability to adhere to complicated intervention is morally justified on regimens, and many are not listed UNIQUE ASPECTS OF ORGAN the grounds that parental refusal falls because of nonadherence or other TRANSPLANT below a harm threshold, should psychosocial factors.55 In pediatrics, refusals be tolerated on the pragmatic Most organ transplants are highly however, parents are responsible for grounds that the likelihood of a good effective lifesaving therapy, and their child’s adherence. If the parents transplant outcome is less likely Table 3 is applicable in such cases. are unable or unwilling to ensure without the adolescent’s active This means that a child in organ their child’s adherence, the state may engagement? failure should be waitlisted need to arrange for out-of-home regardless of parental consent. placement (foster care or I do not believe so. First, organ However, if organ transplant is of low institutionalization) for years to transplant is lifesaving and the fact efficacy because of comorbidities, ensure transplant that organs are scarce does not then greater family discretion is immunosuppression and clinical change the fact that transplant is in permitted (Table 4). These algorithms follow-up adherence. the individual adolescent’s best apply to other lifesaving conditions interest, the standard to which state such as treatment of leukemia and The second difference is that cancer decisions on behalf of children are lymphoma with chemotherapy. treatment may be curative and finite held.63,64 It may mean that additional Because cancer is .5 times more in duration of treatment in contrast to resources will be necessary to common in children than end-stage organ transplant, which requires overcome some psychosocial barriers, organ disease,52,53 these cases have lifelong immunosuppression. To resources that can be mandated by garnered more discussion in the ensure treatment adherence can the courts. Second, researchers have media and medical literature.54 require drastic measures. Consider, noted that pretransplant mood disorder and social support instability TABLE 3 Decision-making With and on Behalf of Children With Respect to Effective Lifesaving increase the risk of nonadherence and Therapies urge interventions that target these 65 Minor’s Preferences modifiable risk factors. Mental Yes No health services should be routine for pediatric transplant recipients. Third, Parents’ preferences Yes Treat Treat to respect family refusal because it No Treat with court order Treat with court order requires involuntary treatment ’ Reprinted with permission from Table 4 in Ross LF. Against the tide: arguments against respecting a minor’s refusal of assumes the teenager s decision is efficacious life-saving treatment. Camb Q Healthc Ethics.2009;18(3):306. final and static. Data reveal

Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 146, number s1, August 2020 S37 TABLE 4 Decision-making With and on Behalf of Minors With Life-threatening Illnesses When Only known to be influenced by celebrity Low Efficacy or Experimental Lifesaving Treatment Exists endorsement of products and – Minor’s Preferences behaviors.80 82 The media’s decision Yes No to publicize stories of adolescent refusals of lifesaving medical Parents’ preferences treatment may unwittingly expand Yes Treat Treat or do not treat (depending on whether adolescent’s assent the number of copycat adolescents required [eg, research]) and young adults who refuse No Do not Do not treat treatment. As such, it behooves the treat media to be responsible and not Reprinted with permission from Table 7 in Ross LF. Against the tide: arguments against respecting a minor’s refusal of provide media attention to these efficacious life-saving treatment. Camb Q Healthc Ethics. 2009;18(3):310. stories, no matter their human- interest appeal. Private mediation adolescents are inconsistent in their psychosocial factors are used to between families and health care preferences and prone to third-party calculate expected benefit in adult professionals, not media amplification influence, with health behaviors being candidates, the state, in its role as of family refusals, is what is needed. no exception.66–68 The team should parens patriae, must provide the work with the child and parents to psychosocial resources if the REFERENCES educate them about expected teenager’s family cannot or will not. 1. Merrill JP, Murray JE, Harrison JH, Guild posttransplant adverse events, As such, teenagers who fulfill WR. Successful homotransplantation of proactively make psychosocial transplant medical criteria should be the human kidney between identical resources available, and motivate listed. twins. J Am Med Assoc. 1956;160(4): adherence to immunosuppression 277–282 and follow-up care. The family should 2. Foster v Harrison, 68674 Eq Mass Sup be introduced to other families who MEDICAL CASES OF TRANSPLANT Jud Ct (1957) are successfully navigating the REFUSALS REVISITED 3. Masden v Harrison, 68651 Eq Mass Sup postoperative course, and mental The media plays an important Jud Ct (1957) health services should be involved to role in influencing the public’s determine if there are psychological understanding of health information. 4. Huskey v Harrison, 68666 Eq Mass Sup reasons like depression, suicidality, or Stories of ill children seem to have Jud Ct (1957) other mental health conditions that particular media appeal, and parents 5. Ross LF, Thistlethwaite JR; and the can explain why the child and/or are willing to go to extreme measures American Academy of Pediatrics parents are refusing. When necessary, to get their children the health care Committee on Bioethics. Minors as the state can mandate separation of they need, from engaging the help of living solid organ donors. Pediatrics. – the child and parents to ensure that a president (Reagan made media 2008;122(2):454 461 the adolescent has parent figures who appeals for deceased donor livers on 6. Ross LF, Thistlethwaite JR. Chapter 1: will support treatment and help behalf of the families of young Children as Living Donors. In: motivate the adolescent to comply children on his weekly radio show)72 Greenberg R, Goldberg A, Rodriguez- with the treatment regimen. to strangers (via social media Arias D, eds. Ethical Issues in Pediatric appeals).73,74 Parents have also Organ Transplantation. NY: Springer; 2016:3–18 Finally, physicians should not attempt posted media stories about children fi to balance the likely bene t of the who are refused lifesaving organs on 7. The New York Times. Behind a boy’s transplant for one patient versus the the basis of social criteria factors to decision to forgo treatment. June 13, fi possible bene t if the organ were to shame institutions into listing and 1994. Available at: https://www.nytimes. be given to another patient because providing organ transplant for com/1994/06/13/us/behind-a-boy-s- decision-to-forgo-treatment.html. this would allow for the exclusion them.75,76 of older, poorer, and less educated Accessed June 29, 2020 patients, all of whom have shorter Adolescents are even more media 8. Lassiter T, Walsh B. Removing sick boy posttransplant graft and patient engaged than their parents. Data from home. Sun Sentinel. June 14, 1994. survival than middle-aged, wealthy, reveal that adolescents are heavily Available at: https://www.sun-sentinel. and educated candidates.69–71 All influenced by what they see and hear com/news/fl-xpm-1994-06-14- transplant candidates who have an on their computers and phones. For 9406140080-story.html. Accessed June expected benefit above some agreed- example, teenage suicide increased 29, 2020 on threshold should be eligible. after Netflix’s “13 Reasons Why” 9. Associated Press. Youth who refused Whereas both medical and premiered,77–79 and teenagers are drug for transplant dies at 15 in

Downloaded from www.aappublications.org/news by guest on October 1, 2021 S38 ROSS Florida. The New York Times. August 22, after-judge-orders-heart-transplant- medical treatment. Pediatrics. 2017; 1994. Available at: https://www.nytimes. against-her-wishes/. Accessed June 29, 140(3):e20171905 com/1994/08/22/us/youth-who-refused- 2020 28. Larcher V, Craig F, Bhogal K, Wilkinson drug-for-transplant-dies-at-15-in-florida. 19. The Northern Echo. Tributes paid as D, Brierley J; Royal College of html. Accessed June 29, 2020 Joanne, 19, dies after refusing double Paediatrics and Child Health. Making 10. Verkaik R. Girl, 13, wins right to refuse transplant. The Northern Echo. March 5, decisions to limit treatment in life- heart transplant. The Independent. 2007. Available at: https://www. limiting and life-threatening conditions November 11, 2008. Available at: https:// thenorthernecho.co.uk/news/1235145. in children: a framework for practice. www.independent.co.uk/life-style/ tributes-paid-as-joanne-19-dies-after- Arch Dis Child. 2015;100(suppl 2): health-and-families/health-news/girl-13- refusing-double-transplant/. Accessed s3–s23 wins-right-to-refuse-heart-transplant- June 29, 2020 1009569.html. Accessed June 29, 2020 29. United Nations General Assembly. 20. Innes E. "Let me get on with it": Declaration of the Rights of the Child, 11. Gillick v West Norfolk and Wisbech Area teenager, 18, refuses heart and double 1959. Available at: https://www. Health Authority and Another, 1 AC 112, lung transplant so he can enjoy the humanium.org/en/declaration-rights- (1986)(UK) time he has left outside hospital. Daily child-2/. Accessed June 29, 2020 Mail. August 26, 2013. Available at: 12. Cornock M. Hannah Jones, consent and https://www.dailymail.co.uk/health/ 30. Office of the United Nations High the child in action: a legal commentary. article-2402091/Let-Teenager-18- Commissioner for Human Rights. Paediatr Nurs. 2010;22(2):14–20 refuses-heart-double-lung-transplant- Convention on the Rights of the Child 13. Retter E. Hannah Jones at 18: I turned enjoy-time-left-outside-hospital.html. (November 20, 1989). Available at: down heart transplant aged 13 but I’m Accessed June 29, 2020 https://www.ohchr.org/en/ so glad I changed my mind. The Mirror. professionalinterest/pages/crc.aspx. 21. British Broadcasting Corporation. Heart July 13, 2013. Available at: https://www. Accessed June 29, 2020 condition teen Liam Gawthorpe refuses mirror.co.uk/news/real-life-stories/ transplant op. 2013. Available at: 31. Diekema DS. Parental refusals of hannah-jones-18-turned-down-2049160. https://www.bbc.com/news/uk-england- medical treatment: the harm principle Accessed June 29, 2020 leeds-23854065. Accessed June 29, 2020 as threshold for state intervention. 14. Mann T. Girl who won the right to die at Theor Med Bioeth. 2004;25(4):243–264 22. Buchanan AE, Brock DW. Deciding for 13 changed her mind and now she’s Others: The Ethics of Surrogate 32. Diekema DS. Revisiting the best interest graduated from uni. Metro. July 28, Decision Making. New York, NY: standard: uses and misuses. J Clin 2017. Available at: https://metro.co.uk/ Cambridge University Press; 1990 Ethics. 2011;22(2):128–133 2017/07/28/girl-who-won-the-right-to- die-at-13-only-to-change-her-mind- 23. American Medical Association. Pediatric 33. Gillam L. The zone of parental graduates-from-university-6812006/. decision making: code of medical ethics discretion: an ethical tool for dealing Accessed June 29, 2020 opinion 2.2.1. Available at: https://www. with disagreement between parents ama-assn.org/delivering-care/ethics/ 15. Neergaard L. Teenage bond helps her and doctors about medical treatment pediatric-decision-making. Accessed – overcome transplant fears. Chicago for a child. Clin Ethics. 2016;11(1):1 8 June 29, 2020 Daily Herald. June 6, 2011. Available at: 34. Winnicott DW. Transitional objects and https://www.dailyherald.com/article/ 24. Katz AL, Webb SA; Committee on transitional phenomena; a study of the 20110606/entlife/706069987/. Accessed Bioethics. Informed consent in decision- first not-me possession. Int June 29, 2020 making in pediatric practice. Pediatrics. J Psychoanal. 1953;34(2):89–97 2016;138(2):e20161485 16. Waggoner M. Heart patient is 1st grad 35. Ross LF. Children, Families and Health of Duke Hospital School. Washington 25. British Medical Association. Consent, Care Decision Making. Oxford, United Examiner. May 31, 2013. Available at: Rights and Choices in Health Care for Kingdom: Oxford University Press; 1998 https://www.washingtonexaminer.com/ Children and Young People. London, heart-patient-is-1st-grad-of-duke- United Kingdom: British Medical 36. Rhodes R, Holzman IR. The not hospital-school. Accessed June 29, 2020 Journal Books; 2001 unreasonable standard for assessment of surrogates and surrogate decisions. ’ 17. Mescall M. Courtneys road to 26. British Medical Association. Children Theor Med Bioeth. 2004;25(4):367–385 a miracle. 2018. Available at: https:// and young person tool kit. Card 5: best www.gofundme.com/ interests. Available at: https://www. 37. Weithorn LA, Campbell SB. The courtneyroadtoamiracle. Accessed bma.org.uk/media/1848/bma-children- competency of children and June 29, 2020 young-people-ethics-guidance-2010.pdf. adolescents to make informed Accessed June 29, 2020 treatment decisions. Child Dev. 1982; 18. The Herald Scotland. Teenage girl 53(6):1589–1598 recovers after judge orders heart 27. Weise KL, Okun AL, Carter BS, Christian transplant against her wishes. The CW; Committee on Bioethics; Section on 38. Grisso T, Vierling L. Minors’ consent to Herald Scotland. July 15, 1999. Available Hospice and Palliative Medicine; treatment: a developmental at: https://www.heraldscotland.com/ Committee on Child Abuse and Neglect. perspective. Prof Psychol. 1978;9(3): news/12357871.teenage-girl-recovers- Guidance on forgoing life-sustaining 412–427

Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 146, number s1, August 2020 S39 39. Leikin SL. Minors’ assent or dissent to Procurement and Transplantation 62. Oliva M, Singh TP, Gauvreau K, medical treatment. J Pediatr. 1983; Network national data. Available at: Vanderpluym CJ, Bastardi HJ, Almond 102(2):169–176 https://optn.transplant.hrsa.gov/data/ CS. Impact of medication non- view-data-reports/national-data/#. adherence on survival after pediatric 40. Weir RF, Peters C. Affirming the Accessed June 29, 2020 heart transplantation in the U.S.A. decisions adolescents make about life J Heart Lung Transplant. 2013;32(9): and death. Hastings Cent Rep. 1997; 54. Caruso Brown AE, Slutzky AR. Refusal of 881–888 27(6):29–40 treatment of childhood cancer: 63. Goldstein J, Freud A, Solnit AJ. Beyond 41. Alderson P. Children’s Consent to a systematic review. Pediatrics. 2017; the Best Interests of the Child, vol. Vol. Surgery. Buckingham, United Kingdom: 140(6):e20171951 1. New York, NY: The Free Press; 1973 Open University Press; 1993 55. Levenson JL, Olbrisch ME. Psychosocial 42. Cohen H. Equal Rights for Children. evaluation of organ transplant 64. Goldstein J, Freud A, Solnit AJ. Before Totowa, NJ: Rowman & Littlefield candidates. A comparative survey of the Best Interests of the Child, vol. Vol. Publishing Group; 1980 process, criteria, and outcomes in 2. New York, NY: The Free Press; 1979 heart, liver, and kidney transplantation. 65. Rodrigue JR, Nelson DR, Hanto DW, Reed 43. Coleman DL, Rosoff PM. The legal Psychosomatics. 1993;34(4):314–323 authority of mature minors to consent AI, Curry MP. Patient-reported to general medical treatment. 56. Columbia Broadcasting System; immunosuppression nonadherence 6 to Pediatrics. 2013;131(4):786–793 Associated Press. Teen forced into 24 months after liver transplant: chemo “couldn’t be happier” to go association with pretransplant 44. Penkower JA. The potential right of home. CBS News. April 27, 2015. psychosocial factors and perceptions of chronically ill adolescents to refuse life- Available at: https://www.cbsnews.com/ health status change. Prog Transplant. saving medical treatment--fatal misuse news/teen-forced-into-chemo-couldnt- 2013;23(4):319–328 of mature minor doctrine. De Paul Law be-happier-to-go-home/. Accessed June ’ Rev. 1996;45(4):1165–1216 66. Scherer DG, Reppuci ND. Adolescents 29, 2020 capacities to provide voluntary 45. Brierley J, Larcher V. Adolescent 57. National Broadcasting Company. informed consent: the effects of autonomy revisited: clinicians need Cassandra C, Connecticut teen who parental influence and medical clearer guidance. J Med Ethics. 2016; refused chemo, speaks about captivity. dilemmas. Law Hum Behav. 1988;12(2): 42(8):482–485 NBC News. March 11, 2015. Available at: 123–141 46. Diekema DS. Adolescent refusal of https://www.nbcnews.com/health/ 67. van Hoorn J, McCormick EM, Rogers CR, lifesaving treatment: are we asking the cancer/cassandra-c-connecticut-teen- Ivory SL, Telzer EH. Differential effects of right questions? Adolesc Med State Art who-refused-chemo-speaks-about- parent and peer presence on neural Rev. 2011;22(2):213–228, viii captivity-n321121. Accessed June 29, correlates of risk taking in 2020 47. Gaylin W. The competence of children: adolescence. Soc Cogn Affect Neurosci. no longer all or none. Hastings Cent 58. Frieden J. Forcing teen to have chemo 2018;13(9):945–955 Rep. 1982;12(2):33–38 not troubling to ethicists. MedPage 68. Francis JKR, Dapena Fraiz L, de Roche 48. Ross LF. Against the tide: arguments Today. January 13, 2015. Available at: AM, Catallozzi M, Radecki Breitkopf C, against respecting a minor’s refusal of https://www.medpagetoday.com/ Rosenthal SL. Management of efficacious life-saving treatment. Camb publichealthpolicy/ethics/49519. adolescent-parent dyads’ discordance Q Healthc Ethics. 2009;18(3):302–322 Accessed June 29, 2020 for willingness to participate in a reproductive health clinical trial. 49. Blustein J. Response. Camb Q Healthc 59. Rianthavorn P, Ettenger RB, Malekzadeh M, Marik JL, Struber M. Noncompliance J Empir Res Hum Res Ethics. 2018;13(1): Ethics. 2009;18:315–320 – with immunosuppressive medications 42 49 50. Clayton EW. Response. Camb Q Healthc in pediatric and adolescent patients 69. Ilori TO, Adedinsewo DA, Odewole O, – Ethics. 2009;18:320 322 receiving solid-organ transplants. et al. Racial and ethnic disparities in 51. Department of Health and Human Transplantation. 2004;77(5): graft and recipient survival in elderly Services. (45 CFR Part 46, subpart D). 778–782 kidney transplant recipients. JAm – Protections for children involved as 60. Lamba S, Nagurka R, Desai KK, Chun SJ, Geriatr Soc. 2015;63(12):2485 2493 Fed Regist subjects in research. . 1983; Holland B, Koneru B. Self-reported non- 70. Gruttadauria S, Grosso G, Mistretta A, – 1983(48):9814 9820 adherence to immune-suppressant et al. Impact of recipients’ socio- 52. American Childhood Cancer therapy in liver transplant recipients: economic status on patient and graft Organization. US childhood cancer demographic, interpersonal, and survival after liver transplantation: The statistics. Available at: https://www. intrapersonal factors. Clin Transplant. IsMeTT Experience. Dig Liver Dis. 2011; acco.org/us-childhood-cancer- 2012;26(2):328–335 43(11):893–898 statistics/. Accessed June 29, 2020 61. Lieber SR, Volk ML. Non-adherence and 71. Wayda B, Clemons A, Givens RC, et al. 53. US Department of Health and Human graft failure in adult liver transplant Socioeconomic disparities in Services; Organ Procurement and recipients. Dig Dis Sci. 2013;58(3): adherence and outcomes after heart Transplantation Network. Organ 824–834 transplant: a UNOS (United Network for

Downloaded from www.aappublications.org/news by guest on October 1, 2021 S40 ROSS Organ Sharing) registry analysis. Circ local/hospital-rejects-teen-for-heart- 79. Quinn SM, Ford CA. Why we should Heart Fail. 2018;11(3):e004173 transplant-list/WxjYKurMlZ5ZO8No9BuW8K/. worry about “13 Reasons Why”. – 72. Williams J. Reagan issues plea for Accessed June 29, 2020 J Adolesc Health. 2018;63(6):663 664 donation of a liver to 11-month-old girl. 76. James SD. Mom says mentally impaired 80. The Telegraph. Teenagers most The Washington Post. July 24, 1983:A6. tot heartlessly denied transplant. ABC influenced by celebrities. The Available at: https://www. News. January 17, 2012. Available at: Telegraph. August 12, 2009. Available at: washingtonpost.com/archive/politics/ https://abcnews.go.com/Health/amelia- https://www.telegraph.co.uk/news/ 1983/07/24/reagan-issues-plea-for- rivera-mentally-disabled-denied-kidney- uknews/6012322/Teenagers-most- donation-of-a-liver-to-11-month-old-girl/ transplant-childrens/story?id= influenced-by-celebrities.html. Accessed 7a01e555-c45a-4510-b93b- 15378575. Accessed June 29, 2020 June 29, 2020 4275db145e44/. Accessed June 29, 2020 77. Welch A. Teen suicide increased after 81. Collins F. Creative minds: do celebrity 73. Ross LF. Media appeals for directed Netflix’s “13 Reasons Why” premiered, endorsements influence teens’ health? altruistic living liver donations: lessons study finds. CBS News. April 30, 2019. NIH Director’s Blog. November 3, 2016. from Camilo Sandoval Ewen. Perspect Available at: https://www.cbsnews.com/ Available at: https://directorsblog.nih. Biol Med. 2002;45(3):329–337 news/teen-suicide-increased-after- gov/2016/11/03/creative-minds-do- 74. Verghese PS, Garvey CA, Mauer MS, netflixs-13-reasons-why-premiered- celebrity-endorsements-influence- Matas AJ. Media appeals by pediatric study-finds/. Accessed June 29, teens-health/. Accessed June 29, 2020 2020 patients for living donors and the 82. Hoffman SJ, Mansoor Y, Natt N, et al. impact on a transplant center. 78. Gould MS, Lake AM. The Contagion of Celebrities’ impact on health-related – Transplantation. 2011;91(6):593 596 Suicidal Behavior. In: IOM (Institute of knowledge, attitudes, behaviors, and 75. Schneider C. Hospital rejects teen for Medicine) and NRC (National Research status outcomes: protocol for heart transplant list. The Atlanta Council). Contagion of Violence: a systematic review, meta-analysis, Journal Constitution. August 12, 2013. Workshop Summary. Washington, DC: and meta-regression analysis. Syst Rev. Available at: https://www.ajc.com/news/ National Academies Press; 2013:68–73 2017;6(1):13

Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 146, number s1, August 2020 S41 Ethical Issues Raised by the Media Portrayal of Adolescent Transplant Refusals Lainie Friedman Ross Pediatrics 2020;146;S33 DOI: 10.1542/peds.2020-0818H

Updated Information & including high resolution figures, can be found at: Services http://pediatrics.aappublications.org/content/146/Supplement_1/S33 References This article cites 41 articles, 7 of which you can access for free at: http://pediatrics.aappublications.org/content/146/Supplement_1/S33# BIBL Subspecialty Collections This article, along with others on similar topics, appears in the following collection(s): Children With Special Health Care Needs http://www.aappublications.org/cgi/collection/disabilities_sub Ethics/Bioethics http://www.aappublications.org/cgi/collection/ethics:bioethics_sub Permissions & Licensing Information about reproducing this article in parts (figures, tables) or in its entirety can be found online at: http://www.aappublications.org/site/misc/Permissions.xhtml Reprints Information about ordering reprints can be found online: http://www.aappublications.org/site/misc/reprints.xhtml

Downloaded from www.aappublications.org/news by guest on October 1, 2021 Ethical Issues Raised by the Media Portrayal of Adolescent Transplant Refusals Lainie Friedman Ross Pediatrics 2020;146;S33 DOI: 10.1542/peds.2020-0818H

The online version of this article, along with updated information and services, is located on the World Wide Web at: http://pediatrics.aappublications.org/content/146/Supplement_1/S33

Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. Pediatrics is owned, published, and trademarked by the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2020 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.

Downloaded from www.aappublications.org/news by guest on October 1, 2021