Cases of adolescents in organ failure who refuse solid organ transplant are not common, but 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.

Children have been at the forefront of solid organ transplant since its inception. Three years after the first successful kidney transplant between identical twin adults (1954),1  Murray and co-workers sought permission from the Massachusetts Superior Judicial Court to perform kidney transplant between identical twin minor pairs who were aged 14, 14, and 19 at a time when the age of majority was 21 years. 24 In each case, the parent(s) consented to the healthy twin’s donation of a kidney for his or her identical twin in kidney failure. Although the court’s focus was on finding that donation was in the healthy twin’s best interest, the court also noted that both the healthy twin and the twin in organ failure gave their (nonbinding) consent to the medical intervention.24 

I have discussed the ethical issues raised by the minor as solid organ donor,5,6  and in this article, I focus exclusively on the adolescent as solid organ transplant candidate. I begin by describing several cases of adolescents in organ failure who refused solid organ transplant discussed in the media in the United States or the United Kingdom. I provide a framework for pediatric decision-making and examine how the efficacy of the therapy changes the ethics of refusals. I then consider the unique ethical issues that lifesaving transplant cases raise by exploring how they are similar to and different from refusals of cancer treatment by adolescents and their parents. I conclude by discussing the need to limit media coverage of pediatric treatment refusals.

Several adolescent transplant refusals have garnered broad media attention. Consider the following 3 cases.

Benito Agrelo was born with an enlarged liver and required a liver transplant at age 7. In 1994, at age 15, Benito’s second liver was failing. He stopped his immunosuppression because of painful side effects. Although his mother and siblings tried to convince him to take his medicines and get relisted, he refused. Florida child protective services forcibly took him to the hospital to make him take his immunosuppressive medications, but a Florida court ruled that he could return home off therapy.7,8  He died 2 months later.9 

In 2008, Hannah Jones, a 13-year-old British teenager, refused a heart transplant.10  She had been treated for leukemia at age 4, but the treatment had irreversibly weakened her heart. Her parents supported her decision and child protective services ruled her mature (what is known in the United Kingdom as Gillick competent11 ), resulting in her doctors’ decision not to pursue court authorization.12  However, in 2009, Hannah changed her mind, was listed, and a donor heart was successfully transplanted.13  In July 2017, she graduated college.14 

In 2011, Courtney Montgomery of North Carolina, aged 16, refused a heart transplant for hypertrophic cardiomyopathy that was diagnosed when she was 8 years old. Duke physicians arranged for her to meet with Josh Winstead, a 17-year-old heart transplant recipient. He convinced her to be listed, took her to his prom, and she had a successful heart transplant a few weeks later.15  Unfortunately, she had a cardiac arrest during a catherization a year later and was placed on extracorporeal membrane oxygenation for 3 weeks. She had a rough course and spent a lot of time at the hospital, becoming the first graduate of its educational program.16  Now, at age 24 years, she is in need of another heart but is ambivalent about relisting.17 

These anecdotes represent the tip of the iceberg (see Table 1 for other media reports1821 ), although the size of the iceberg remains unknown. It is suggested in anecdotes from colleagues that organ refusals by teenagers do occur, and their health care teams spend hours negotiating with these teenagers and their parents outside of the media glare.

TABLE 1

Cases of Adolescent Refusals of Organ Transplant in the Media

NameYear of Media AttentionSexRace and/or EthnicityAge at Media Coverage, yLocationCourt InvolvedType of TransplantCauseParental SupportOutcome
Benito Agrelo79  1994 Male Hispanic 16 Florida Yes Liver Liver failing and then Benny becomes noncompliant Mother expresses support for her son’s decision Goes untreated; not listed for third transplant; dies in 3 mo 
M18  1999 Female Unknown 15 United Kingdom Yes Heart Heart failure Mother consented Supposedly, she assented after court ruling; transplant done; no further follow-up 
Joanne Vincent19  2007 Female White 19 (refused at 12) United Kingdom No Heart-lung Genetic heart condition Parents supported Died at age 19 y 
Hannah Jones10,13,14  2008–2009 Female White 13 United Kingdom No Heart Secondary to cancer treatment Parents support her refusal Changes her mind; heart is transplanted; doing well 
Courtney Montgomery1517  2011 Female Black 16 North Carolina No Heart Hypertrophic cardiomyopathy Mother supports her Changes her mind; heart is transplanted; doing poorly 
Liam Gawthorpe20,21  2006 and 2013 Male White 11 and 18 United Kingdom No Heart, heart-lung Congenital abnormality Parents support him Refuses transplant; no follow-up available 
NameYear of Media AttentionSexRace and/or EthnicityAge at Media Coverage, yLocationCourt InvolvedType of TransplantCauseParental SupportOutcome
Benito Agrelo79  1994 Male Hispanic 16 Florida Yes Liver Liver failing and then Benny becomes noncompliant Mother expresses support for her son’s decision Goes untreated; not listed for third transplant; dies in 3 mo 
M18  1999 Female Unknown 15 United Kingdom Yes Heart Heart failure Mother consented Supposedly, she assented after court ruling; transplant done; no further follow-up 
Joanne Vincent19  2007 Female White 19 (refused at 12) United Kingdom No Heart-lung Genetic heart condition Parents supported Died at age 19 y 
Hannah Jones10,13,14  2008–2009 Female White 13 United Kingdom No Heart Secondary to cancer treatment Parents support her refusal Changes her mind; heart is transplanted; doing well 
Courtney Montgomery1517  2011 Female Black 16 North Carolina No Heart Hypertrophic cardiomyopathy Mother supports her Changes her mind; heart is transplanted; doing poorly 
Liam Gawthorpe20,21  2006 and 2013 Male White 11 and 18 United Kingdom No Heart, heart-lung Congenital abnormality Parents support him Refuses transplant; no follow-up available 

How should physicians respond to pediatric refusals of lifesaving treatment? Buchanan and Brock22  developed a framework for surrogate decision-making on the basis of 4 principles: (1) ethical values principle (what are the underlying ethical values?), (2) guidance principle (what principle[s] should guide parental decision-making?), (3) authority principle (who is the appropriate decision-maker?), and (4) intervention principle (when should the state intervene?). Below, I consider each principle for pediatric patients.

In pediatrics, parents are presumed to be the decision-makers for their children (authority principle). The underlying ethical values principles include well-being and self-determination with greater focus being placed on well-being for children. In pediatrics, Buchanan and Brock22  add a third ethical value: parental interests. They include parental interests because of the importance of the family as an institution and argue that within the family, parents must have the privacy and freedom to raise their children according to their own values, knowing that they will bear the consequences of these decisions.22 

In most policy statements about children, the “best interests standard” is declared the appropriate guidance principle.2330  There is also consensus, at least in the United States, that parental decisions must fall below some harm threshold before the state should intervene (intervention principle).22,31,32  One 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 principle, the best interests standard “serve[s] only as a regulative ideal, not as a strict and literal requirement,"22  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 unchallenged.3336 

When the patient is a young toddler, parents act as surrogate decision-makers, but as Buchanan and Brock22  noted, “the presumption that all minors are incompetent for health care decision-making is difficult to defend.”22  What role, then, should the mature adolescent play in health care decision-making?

Most social scientists and theorists who support adolescent decision-making point to empirical data that reveal that older adolescents make similar decisions when compared with their adult counterparts.37,38  Some argue that adolescents should be empowered to consent to treatment by themselves,3942  citing mature minor statutes. However, Coleman and Rosoff,43  a lawyer and a pediatrician, respectively, explain that mature minor statutes are often misconstrued: they were meant to empower adolescents to consent to treatment in limited situations, not to apply more generally to treatment refusals.43  That is, adolescents have the right to say yes to certain treatments but do not necessarily have the right to say no. Another lawyer, Penkower,44  explains that mature minor policies are less about respect for adolescent self-determination and more about promoting their well-being:

Mature minor statutes do not afford adolescents a right to access for the sake of expanding their rights in the health care context, but the courts have only extended the right to access where it is in adolescents’ best interests to do so. The minor is never free from an inquiry as to what is in his or her best interests. Courts will not even embark on a maturity evaluation unless a finding of maturity will in some way serve the best interests of the minor.44 

Similar misunderstandings occur in the United Kingdom where the concept of Gillick competence empowers adolescents aged 16 years and older to consent to treatment but not necessarily to refuse. Brierley and Larcher45  explain:

Post Gillick, it was a common professional assumption that a Gillick-competent child’s refusal was as equally valid as his or her consent…However, a distinction was drawn between the power of determination (veto) and that of consent, so that in essence those with parental responsibility—including Courts—had authority to override the refusal of a Gillick-competent child, if it was in his or her best interests to do so.45 

The argument to justify limiting adolescent autonomy is threefold. First, it ignores the rights and responsibilities that parents have to make decisions on their child’s behalf and their interest in doing so.22,35  Second, although adolescents may have the cognitive ability to make decisions, whether they actually use their knowledge is a different story.46  The empirical studies used to support equivalent decision-making skills by adolescents and adults were pen-and-paper surveys conducted in neutral laboratory settings devoid of the psychosocial and emotional context in which medical decisions are made. Given our evolving understanding of the adolescent brain, these studies “fail to establish whether those capacities would be exercised similarly in a health care crisis.”46 

Third, adolescent decisions are based on limited world experience and are often focused on short-term risks and benefits without consideration of long-term risks and benefits.35,47  Greater focus on physical appearance and peer acceptance may result in nonadherence to lifesaving immunosuppression because of side effects (eg, loss of hair, hirsutism, or acne).37 

Even if adolescents should not have sole decision-making authority, we still need to determine what role, if any, they should play in their own health care decision-making. In an article entitled “Against the Tide: Arguments Against Respecting a Minor’s Refusal of Efficacious Life-Saving Treatment,”48  I examined and labeled the 4 possible outcomes of involving both parents and adolescents in decision-making for lifesaving condition (see Table 2).48 Tables 3 and 4 are used to describe the possible outcomes when the treatment is highly effective (Table 3) and when it is less effective or experimental (Table 4).48  Let us examine each in turn.

TABLE 2

Decision-making With and on Behalf of Children

Minor’s Preferences
YesNo
Parents’ preferences   
 Yes Box 1: family consent Box 2: adolescent refusal 
 No Box 3: parental refusal Box 4: family refusal 
Minor’s Preferences
YesNo
Parents’ preferences   
 Yes Box 1: family consent Box 2: adolescent refusal 
 No Box 3: parental refusal Box 4: family refusal 

Reprinted with permission from Table 3 in Ross LF. Against the tide: arguments against respecting a minor’s refusal of efficacious life-saving treatment. Camb Q Healthc Ethics.2009;18(3):305.

TABLE 3

Decision-making With and on Behalf of Children With Respect to Effective Lifesaving Therapies

Minor’s Preferences
YesNo
Parents’ preferences   
 Yes Treat Treat 
 No Treat with court order Treat with court order 
Minor’s Preferences
YesNo
Parents’ preferences   
 Yes Treat Treat 
 No Treat with court order Treat with court order 

Reprinted with permission from Table 4 in Ross LF. Against the tide: arguments against respecting a minor’s refusal of efficacious life-saving treatment. Camb Q Healthc Ethics.2009;18(3):306.

TABLE 4

Decision-making With and on Behalf of Minors With Life-threatening Illnesses When Only Low Efficacy or Experimental Lifesaving Treatment Exists

Minor’s Preferences
YesNo
Parents’ preferences   
Yes Treat Treat or do not treat (depending on whether adolescent’s assent required [eg, research]) 
No Do not treat Do not treat 
Minor’s Preferences
YesNo
Parents’ preferences   
Yes Treat Treat or do not treat (depending on whether adolescent’s assent required [eg, research]) 
No Do not treat Do not treat 

Reprinted with permission from Table 7 in Ross LF. Against the tide: arguments against respecting a minor’s refusal of efficacious life-saving treatment. Camb Q Healthc Ethics. 2009;18(3):310.

In Table 3, when both the parents and child agree to treatment (box 1: family consent), physicians provide treatment because there is consensus that treatment promotes the child’s well-being. When the parents want the child to be treated, but the child refuses (box 2: adolescent refusal), physicians provide treatment because only parental permission is needed to authorize effective lifesaving treatment of a child. This does not mean that the physician or parents should ignore the child. Reasons for refusal should be discussed and attempts made to get the adolescent’s assent, but in the end, if parents authorize treatment, physicians provide treatment either with (box 1) or without (box 2) the adolescent’s assent.

When parents refuse to authorize effective lifesaving treatment (boxes 3 and 4), then the parents’ decision is neglectful, and state intervention is sought. I have previously argued that family refusals (box 4) should be treated no differently than parental refusals (box 3) and that the court should mandate treatment.48  If parental involvement is necessary and not forthcoming (box 3), the teenager can be placed in medical foster care. Although the ethical argument is the same for box 4, it becomes harder to force treatment if the teenager’s active participation is necessary. In the actual clinic, it may raise the questions regarding how much time and how many resources one may morally spend to do the right thing (and whether this calculus will change when the resources are a scarce resource like an organ), which will be discussed below.

In the framework of Table 3, physicians are supported in treating minors when it is in the minor’s best interest (effective lifesaving treatment) regardless of what the parent or minor says. For some, this is unsatisfactorily paternalistic,41,49,50  although the doctrine of parens patriae empowers the state to step in and serve as a guardian for minors to promote their well-being, which supersedes respect for their developing self-determination.48 

This does not mean that physicians should always argue to force treatment nor that the state should always empower them to do so. Parental decisions should only be challenged by the state when these decisions fall below a harm threshold. When the treatment is experimental, then by definition it is unknown whether the benefits outweigh the risks, and greater parental discretion is permitted (see Table 4). Thus, when treatment is of low efficacy or experimental, physicians should treat with family consent (box 1), but if the parents refuse to authorize treatment (boxes 3 and 4), the adolescent should not be treated, even if he or she would want treatment (box 3). However, if the treatment is of questionable efficacy and the parents authorize treatment, the child’s dissent may be more or less compelling (box 2) depending on the child’s maturity, the likelihood of efficacy, and other factors, including, for example, in the case of human subjects research, whether the institutional review board has stated that the child’s active assent must be obtained.51 

The difference then between Tables 3 and 4 is the efficacy of the treatment, which impacts the degree of parental discretion and the role of the adolescent.

Most organ transplants are highly effective lifesaving therapy, and Table 3 is applicable in such cases. This means that a child in organ failure should be waitlisted regardless of parental consent. However, if organ transplant is of low efficacy because of comorbidities, then greater family discretion is permitted (Table 4). These algorithms apply to other lifesaving conditions such as treatment of leukemia and lymphoma with chemotherapy. Because cancer is >5 times more common in children than end-stage organ disease,52,53  these cases have garnered more discussion in the media and medical literature.54 

Two major differences exist, however, between most lifesaving treatments (like chemotherapy for cancer) and organ transplant that have been proposed to justify differences in whether the state should intervene. The first difference is that transplant involves a scarce resource. This raises the question of the responsibilities that physicians have to their patients but also to the wider community. To promote transplant efficiency, adult transplant candidates must prove their ability to adhere to complicated regimens, and many are not listed because of nonadherence or other psychosocial factors.55  In pediatrics, however, parents are responsible for their child’s adherence. If the parents are unable or unwilling to ensure their child’s adherence, the state may need to arrange for out-of-home placement (foster care or institutionalization) for years to ensure transplant immunosuppression and clinical follow-up adherence.

The second difference is that cancer treatment may be curative and finite in duration of treatment in contrast to organ transplant, which requires lifelong immunosuppression. To ensure treatment adherence can require drastic measures. Consider, for example, 17-year-old Cassandra Callender who was literally kept under police guard at a Hartford Hospital because she and her mother refused lifesaving chemotherapy for her highly curable cancer.56,57  Although many ethicists who were interviewed agreed with the court’s decision,58  the teenager considered herself a “hostage.”57  The need for lifelong immunosuppression could require long-term involuntary treatment and/or out-of-home placement until adulthood.

Nonadherence is the most common cause of graft loss and mortality in transplant recipient of all age groups.5962  However, medication nonadherence is >4 times greater in adolescents than in adults.59  An adolescent who refuses organ transplant may be at even greater risk of nonadherence. Thus, even if state intervention is morally justified on the grounds that parental refusal falls below a harm threshold, should refusals be tolerated on the pragmatic grounds that the likelihood of a good transplant outcome is less likely without the adolescent’s active engagement?

I do not believe so. First, organ transplant is lifesaving and the fact that organs are scarce does not change the fact that transplant is in the individual adolescent’s best interest, the standard to which state decisions on behalf of children are held.63,64  It may mean that additional resources will be necessary to overcome some psychosocial barriers, resources that can be mandated by the courts. Second, researchers have noted that pretransplant mood disorder and social support instability increase the risk of nonadherence and urge interventions that target these modifiable risk factors.65  Mental health services should be routine for pediatric transplant recipients. Third, to respect family refusal because it requires involuntary treatment assumes the teenager’s decision is final and static. Data reveal adolescents are inconsistent in their preferences and prone to third-party influence, with health behaviors being no exception.6668  The team should work with the child and parents to educate them about expected posttransplant adverse events, proactively make psychosocial resources available, and motivate adherence to immunosuppression and follow-up care. The family should be introduced to other families who are successfully navigating the postoperative course, and mental health services should be involved to determine if there are psychological reasons like depression, suicidality, or other mental health conditions that can explain why the child and/or parents are refusing. When necessary, the state can mandate separation of the child and parents to ensure that the adolescent has parent figures who will support treatment and help motivate the adolescent to comply with the treatment regimen.

Finally, physicians should not attempt to balance the likely benefit of the transplant for one patient versus the possible benefit if the organ were to be given to another patient because this would allow for the exclusion of older, poorer, and less educated patients, all of whom have shorter posttransplant graft and patient survival than middle-aged, wealthy, and educated candidates.6971  All transplant candidates who have an expected benefit above some agreed-on threshold should be eligible. Whereas both medical and psychosocial factors are used to calculate expected benefit in adult candidates, the state, in its role as parens patriae, must provide the psychosocial resources if the teenager’s family cannot or will not. As such, teenagers who fulfill transplant medical criteria should be listed.

The media plays an important role in influencing the public’s understanding of health information. Stories of ill children seem to have particular media appeal, and parents are willing to go to extreme measures to get their children the health care they need, from engaging the help of a president (Reagan made media appeals for deceased donor livers on behalf of the families of young children on his weekly radio show)72  to strangers (via social media appeals).73,74  Parents have also posted media stories about children who are refused lifesaving organs on the basis of social criteria factors to shame institutions into listing and providing organ transplant for them.75,76 

Adolescents are even more media engaged than their parents. Data reveal that adolescents are heavily influenced by what they see and hear on their computers and phones. For example, teenage suicide increased after Netflix’s “13 Reasons Why” premiered,7779  and teenagers are known to be influenced by celebrity endorsement of products and behaviors.8082  The media’s decision to publicize stories of adolescent refusals of lifesaving medical treatment may unwittingly expand the number of copycat adolescents and young adults who refuse treatment. As such, it behooves the media to be responsible and not provide media attention to these stories, no matter their human-interest appeal. Private mediation between families and health care professionals, not media amplification of family refusals, is what is needed.

Dr Ross conceptualized and designed the study, drafted the initial manuscript, and approved the final manuscript as submitted.

FUNDING: No external funding.

1
Merrill
JP
,
Murray
JE
,
Harrison
JH
,
Guild
WR
.
Successful homotransplantation of the human kidney between identical twins
.
J Am Med Assoc
.
1956
;
160
(
4
):
277
282
2
Foster v Harrison, 68674 Eq Mass Sup Jud Ct (1957)
3
Masden v Harrison, 68651 Eq Mass Sup Jud Ct (1957)
4
Huskey v Harrison, 68666 Eq Mass Sup Jud Ct (1957)
5
Ross
LF
,
Thistlethwaite
JR
;
and the American Academy of Pediatrics Committee on Bioethics
.
Minors as living solid organ donors
.
Pediatrics
.
2008
;
122
(
2
):
454
461
6
Ross
LF
,
Thistlethwaite
JR
. Chapter 1: Children as Living Donors. In:
Greenberg
R
,
Goldberg
A
,
Rodriguez-Arias
D
, eds.
Ethical Issues in Pediatric Organ Transplantation
.
NY
:
Springer
;
2016
:
3
18
7
The New York Times
.
Behind a boy’s decision to forgo treatment.
June 13,
1994
. Available at: https://www.nytimes.com/1994/06/13/us/behind-a-boy-s-decision-to-forgo-treatment.html. Accessed June 29, 2020
8
Lassiter
T
,
Walsh
B
.
Removing sick boy from home.
Sun Sentinel
. June 14,
1994
. Available at: https://www.sun-sentinel.com/news/fl-xpm-1994-06-14-9406140080-story.html. Accessed June 29, 2020
9
Associated Press
.
Youth who refused drug for transplant dies at 15 in Florida.
The New York Times. August 22,
1994
. Available at: https://www.nytimes.com/1994/08/22/us/youth-who-refused-drug-for-transplant-dies-at-15-in-florida.html. Accessed June 29, 2020
10
Verkaik R.
Girl
, 13, wins right to refuse heart transplant. The Independent. November 11,
2008
. Available at: https://www.independent.co.uk/life-style/health-and-families/health-news/girl-13-wins-right-to-refuse-heart-transplant-1009569.html. Accessed June 29, 2020
11
Gillick v West Norfolk and Wisbech Area Health Authority and Another, 1 AC 112, (1986)(UK)
12
Cornock
M
.
Hannah Jones, consent and the child in action: a legal commentary
.
Paediatr Nurs
.
2010
;
22
(
2
):
14
20
13
Retter
E.
Hannah Jones at 18: I turned down heart transplant aged 13 but I’m so glad I changed my mind. The Mirror. July 13,
2013
. Available at: https://www.mirror.co.uk/news/real-life-stories/hannah-jones-18-turned-down-2049160. Accessed June 29, 2020
14
Mann
T.
Girl who won the right to die at 13 changed her mind and now she’s graduated from uni.
Metro. July 28,
2017
. Available at: https://metro.co.uk/2017/07/28/girl-who-won-the-right-to-die-at-13-only-to-change-her-mind-graduates-from-university-6812006/. Accessed June 29, 2020
15
Neergaard
L.
Teenage bond helps her overcome transplant fears.
Chicago Daily Herald. June 6,
2011
. Available at: https://www.dailyherald.com/article/20110606/entlife/706069987/. Accessed June 29, 2020
16
Waggoner
M.
Heart patient is 1st grad of Duke Hospital School. Washington Examiner. May 31,
2013
. Available at: https://www.washingtonexaminer.com/heart-patient-is-1st-grad-of-duke-hospital-school. Accessed June 29, 2020
17
Mescall
M.
Courtney’s road to a miracle.
2018
. Available at: https://www.gofundme.com/courtneyroadtoamiracle. Accessed June 29, 2020
18
The Herald Scotland
.
Teenage girl recovers after judge orders heart transplant against her wishes.
The Herald Scotland. July 15,
1999
. Available at: https://www.heraldscotland.com/news/12357871.teenage-girl-recovers-after-judge-orders-heart-transplant-against-her-wishes/. Accessed June 29, 2020
19
The Northern Echo
. Tributes paid as Joanne, 19, dies after refusing double transplant. The Northern Echo. March 5,
2007
. Available at: https://www.thenorthernecho.co.uk/news/1235145.tributes-paid-as-joanne-19-dies-after-refusing-double-transplant/. Accessed June 29, 2020
20
Innes
E.
"Let me get on with it": teenager, 18, refuses heart and double lung transplant so he can enjoy the time he has left outside hospital. Daily Mail. August 26,
2013
. Available at: https://www.dailymail.co.uk/health/article-2402091/Let-Teenager-18-refuses-heart-double-lung-transplant-enjoy-time-left-outside-hospital.html. Accessed June 29, 2020
21
British Broadcasting Corporation
.
Heart condition teen Liam Gawthorpe refuses transplant op.
2013
. Available at: https://www.bbc.com/news/uk-england-leeds-23854065. Accessed June 29, 2020
22
Buchanan
AE
,
Brock
DW
.
Deciding for Others: The Ethics of Surrogate Decision Making
.
New York, NY
:
Cambridge University Press
;
1990
23
American Medical Association
. Pediatric decision making: code of medical ethics opinion 2.2.1. Available at: https://www.ama-assn.org/delivering-care/ethics/pediatric-decision-making. Accessed June 29, 2020
24
Katz
AL
,
Webb
SA
;
Committee on Bioethics
.
Informed consent in decision-making in pediatric practice
.
Pediatrics
.
2016
;
138
(
2
):
e20161485
25
British Medical Association
.
Consent, Rights and Choices in Health Care for Children and Young People
.
London, United Kingdom
:
British Medical Journal Books
;
2001
26
British Medical Association
.
Children and young person tool kit.
Card 5: best interests. Available at: https://www.bma.org.uk/media/1848/bma-children-young-people-ethics-guidance-2010.pdf. Accessed June 29, 2020
27
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
28
Larcher
V
,
Craig
F
,
Bhogal
K
,
Wilkinson
D
,
Brierley
J
;
Royal College of Paediatrics and Child Health
.
Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice
.
Arch Dis Child
.
2015
;
100
(
suppl 2
):
s3
s23
29
United Nations General Assembly
.
Declaration of the Rights of the Child
,
1959
. Available at: https://www.humanium.org/en/declaration-rights-child-2/. Accessed June 29, 2020
30
Office of the United Nations High Commissioner for Human Rights
.
Convention on the Rights of the Child
(November 20,
1989
). Available at: https://www.ohchr.org/en/professionalinterest/pages/crc.aspx. Accessed June 29, 2020
31
Diekema
DS
.
Parental refusals of medical treatment: the harm principle as threshold for state intervention
.
Theor Med Bioeth
.
2004
;
25
(
4
):
243
264
32
Diekema
DS
.
Revisiting the best interest standard: uses and misuses
.
J Clin Ethics
.
2011
;
22
(
2
):
128
133
33
Gillam
L
.
The zone of parental discretion: an ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child
.
Clin Ethics
.
2016
;
11
(
1
):
1
8
34
Winnicott
DW
.
Transitional objects and transitional phenomena; a study of the first not-me possession
.
Int J Psychoanal
.
1953
;
34
(
2
):
89
97
35
Ross
LF
.
Children, Families and Health Care Decision Making
.
Oxford, United Kingdom
:
Oxford University Press
;
1998
36
Rhodes
R
,
Holzman
IR
.
The not unreasonable standard for assessment of surrogates and surrogate decisions
.
Theor Med Bioeth
.
2004
;
25
(
4
):
367
385
37
Weithorn
LA
,
Campbell
SB
.
The competency of children and adolescents to make informed treatment decisions
.
Child Dev
.
1982
;
53
(
6
):
1589
1598
38
Grisso
T
,
Vierling
L
.
Minors’ consent to treatment: a developmental perspective
.
Prof Psychol
.
1978
;
9
(
3
):
412
427
39
Leikin
SL
.
Minors’ assent or dissent to medical treatment
.
J Pediatr
.
1983
;
102
(
2
):
169
176
40
Weir
RF
,
Peters
C
.
Affirming the decisions adolescents make about life and death
.
Hastings Cent Rep
.
1997
;
27
(
6
):
29
40
41
Alderson
P
.
Children’s Consent to Surgery
.
Buckingham, United Kingdom
:
Open University Press
;
1993
42
Cohen
H
.
Equal Rights for Children
.
Totowa, NJ
:
Rowman & Littlefield Publishing Group
;
1980
43
Coleman
DL
,
Rosoff
PM
.
The legal authority of mature minors to consent to general medical treatment
.
Pediatrics
.
2013
;
131
(
4
):
786
793
44
Penkower
JA
.
The potential right of chronically ill adolescents to refuse life-saving medical treatment--fatal misuse of mature minor doctrine
.
De Paul Law Rev
.
1996
;
45
(
4
):
1165
1216
45
Brierley
J
,
Larcher
V
.
Adolescent autonomy revisited: clinicians need clearer guidance
.
J Med Ethics
.
2016
;
42
(
8
):
482
485
46
Diekema
DS
.
Adolescent refusal of lifesaving treatment: are we asking the right questions?
Adolesc Med State Art Rev
.
2011
;
22
(
2
):
213
228, viii
47
Gaylin
W
.
The competence of children: no longer all or none
.
Hastings Cent Rep
.
1982
;
12
(
2
):
33
38
48
Ross
LF
.
Against the tide: arguments against respecting a minor’s refusal of efficacious life-saving treatment
.
Camb Q Healthc Ethics
.
2009
;
18
(
3
):
302
322
49
Blustein
J
.
Response
.
Camb Q Healthc Ethics
.
2009
;
18
:
315
320
50
Clayton
EW
.
Response
.
Camb Q Healthc Ethics
.
2009
;
18
:
320
322
51
Department of Health and Human Services
.
(45 CFR Part 46, subpart D). Protections for children involved as subjects in research
.
Fed Regist
.
1983
;
1983
(
48
):
9814
9820
52
American Childhood Cancer Organization
.
US childhood cancer statistics.
Available at: https://www.acco.org/us-childhood-cancer-statistics/. Accessed June 29, 2020
53
US Department of Health and Human Services
;
Organ Procurement and Transplantation Network.
Organ Procurement and Transplantation Network national data. Available at: https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#. Accessed June 29, 2020
54
Caruso Brown
AE
,
Slutzky
AR
.
Refusal of treatment of childhood cancer: a systematic review
.
Pediatrics
.
2017
;
140
(
6
):
e20171951
55
Levenson
JL
,
Olbrisch
ME
.
Psychosocial evaluation of organ transplant candidates. A comparative survey of process, criteria, and outcomes in heart, liver, and kidney transplantation
.
Psychosomatics
.
1993
;
34
(
4
):
314
323
56
Columbia Broadcasting System
; Associated Press. Teen forced into chemo “couldn't be happier” to go home. CBS News. April 27,
2015
. Available at: https://www.cbsnews.com/news/teen-forced-into-chemo-couldnt-be-happier-to-go-home/. Accessed June 29, 2020
57
National Broadcasting Company
. Cassandra C, Connecticut teen who refused chemo, speaks about captivity. NBC News. March 11,
2015
. Available at: https://www.nbcnews.com/health/cancer/cassandra-c-connecticut-teen-who-refused-chemo-speaks-about-captivity-n321121. Accessed June 29, 2020
58
Frieden
J.
Forcing teen to have chemo not troubling to ethicists.
MedPage Today. January 13,
2015
. Available at: https://www.medpagetoday.com/publichealthpolicy/ethics/49519. Accessed June 29, 2020
59
Rianthavorn
P
,
Ettenger
RB
,
Malekzadeh
M
,
Marik
JL
,
Struber
M
.
Noncompliance with immunosuppressive medications in pediatric and adolescent patients receiving solid-organ transplants
.
Transplantation
.
2004
;
77
(
5
):
778
782
60
Lamba
S
,
Nagurka
R
,
Desai
KK
,
Chun
SJ
,
Holland
B
,
Koneru
B
.
Self-reported non-adherence to immune-suppressant therapy in liver transplant recipients: demographic, interpersonal, and intrapersonal factors
.
Clin Transplant
.
2012
;
26
(
2
):
328
335
61
Lieber
SR
,
Volk
ML
.
Non-adherence and graft failure in adult liver transplant recipients
.
Dig Dis Sci
.
2013
;
58
(
3
):
824
834
62
Oliva
M
,
Singh
TP
,
Gauvreau
K
,
Vanderpluym
CJ
,
Bastardi
HJ
,
Almond
CS
.
Impact of medication non-adherence on survival after pediatric heart transplantation in the U.S.A
.
J Heart Lung Transplant
.
2013
;
32
(
9
):
881
888
63
Goldstein
J
,
Freud
A
,
Solnit
AJ
.
Beyond the Best Interests of the Child
, vol.
Vol. 1
.
New York, NY
:
The Free Press
;
1973
64
Goldstein
J
,
Freud
A
,
Solnit
AJ
.
Before the Best Interests of the Child
, vol.
Vol. 2
.
New York, NY
:
The Free Press
;
1979
65
Rodrigue
JR
,
Nelson
DR
,
Hanto
DW
,
Reed
AI
,
Curry
MP
.
Patient-reported immunosuppression nonadherence 6 to 24 months after liver transplant: association with pretransplant psychosocial factors and perceptions of health status change
.
Prog Transplant
.
2013
;
23
(
4
):
319
328
66
Scherer
DG
,
Reppuci
ND
.
Adolescents’ capacities to provide voluntary informed consent: the effects of parental influence and medical dilemmas
.
Law Hum Behav
.
1988
;
12
(
2
):
123
141
67
van Hoorn
J
,
McCormick
EM
,
Rogers
CR
,
Ivory
SL
,
Telzer
EH
.
Differential effects of parent and peer presence on neural correlates of risk taking in adolescence
.
Soc Cogn Affect Neurosci
.
2018
;
13
(
9
):
945
955
68
Francis
JKR
,
Dapena Fraiz
L
,
de Roche
AM
,
Catallozzi
M
,
Radecki Breitkopf
C
,
Rosenthal
SL
.
Management of adolescent-parent dyads’ discordance for willingness to participate in a reproductive health clinical trial
.
J Empir Res Hum Res Ethics
.
2018
;
13
(
1
):
42
49
69
Ilori
TO
,
Adedinsewo
DA
,
Odewole
O
, et al
.
Racial and ethnic disparities in graft and recipient survival in elderly kidney transplant recipients
.
J Am Geriatr Soc
.
2015
;
63
(
12
):
2485
2493
70
Gruttadauria
S
,
Grosso
G
,
Mistretta
A
, et al
.
Impact of recipients’ socio-economic status on patient and graft survival after liver transplantation: The IsMeTT Experience
.
Dig Liver Dis
.
2011
;
43
(
11
):
893
898
71
Wayda
B
,
Clemons
A
,
Givens
RC
, et al
.
Socioeconomic disparities in adherence and outcomes after heart transplant: a UNOS (United Network for Organ Sharing) registry analysis
.
Circ Heart Fail
.
2018
;
11
(
3
):
e004173
72
Williams
J.
Reagan issues plea for donation of a liver to 11-month-old girl. The Washington Post. July 24,
1983
:A6. Available at: https://www.washingtonpost.com/archive/politics/1983/07/24/reagan-issues-plea-for-donation-of-a-liver-to-11-month-old-girl/7a01e555-c45a-4510-b93b-4275db145e44/. Accessed June 29, 2020
73
Ross
LF
.
Media appeals for directed altruistic living liver donations: lessons from Camilo Sandoval Ewen
.
Perspect Biol Med
.
2002
;
45
(
3
):
329
337
74
Verghese
PS
,
Garvey
CA
,
Mauer
MS
,
Matas
AJ
.
Media appeals by pediatric patients for living donors and the impact on a transplant center
.
Transplantation
.
2011
;
91
(
6
):
593
596
75
Schneider
C.
Hospital rejects teen for heart transplant list.
The Atlanta Journal Constitution
. August 12,
2013
. Available at: https://www.ajc.com/news/local/hospital-rejects-teen-for-heart-transplant-list/WxjYKurMlZ5ZO8No9BuW8K/. Accessed June 29, 2020
76
James
SD
.
Mom says mentally impaired tot heartlessly denied transplant.
ABC News. January 17,
2012
. Available at: https://abcnews.go.com/Health/amelia-rivera-mentally-disabled-denied-kidney-transplant-childrens/story?id=15378575. Accessed June 29, 2020
77
Welch
A.
Teen suicide increased after Netflix’s “13 Reasons Why” premiered, study finds. CBS News. April 30,
2019
. Available at: https://www.cbsnews.com/news/teen-suicide-increased-after-netflixs-13-reasons-why-premiered-study-finds/. Accessed June 29, 2020
78
Gould
MS
,
Lake
AM
. The Contagion of Suicidal Behavior. In:
IOM (Institute of Medicine) and NRC (National Research Council). Contagion of Violence: Workshop Summary
.
Washington, DC
:
National Academies Press
;
2013
:
68
73
79
Quinn
SM
,
Ford
CA
.
Why we should worry about “13 Reasons Why”
.
J Adolesc Health
.
2018
;
63
(
6
):
663
664
80
The Telegraph
.
Teenagers most influenced by celebrities.
The Telegraph. August 12,
2009
. Available at: https://www.telegraph.co.uk/news/uknews/6012322/Teenagers-most-influenced-by-celebrities.html. Accessed June 29, 2020
81
Collins
F.
Creative minds: do celebrity endorsements influence teens’ health? NIH Director’s Blog. November 3,
2016
. Available at: https://directorsblog.nih.gov/2016/11/03/creative-minds-do-celebrity-endorsements-influence-teens-health/. Accessed June 29, 2020
82
Hoffman
SJ
,
Mansoor
Y
,
Natt
N
, et al
.
Celebrities’ impact on health-related knowledge, attitudes, behaviors, and status outcomes: protocol for a systematic review, meta-analysis, and meta-regression analysis
.
Syst Rev
.
2017
;
6
(
1
):
13

Competing Interests

POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The author has indicated she has no financial relationships relevant to this article to disclose.