The case of Jamie Fiske and subsequent public appeals for particular children by President Ronald Reagan represent classic cases in pediatric bioethics in which parents or others publicly appealed for a donor organ for a particular child. These raise questions about the appropriate boundaries for public appeals for a limited resource for a particular child and how the press and medical community should respond to such appeals. Public appeals by parents to advocate for their child to receive a limited resource above others promote rationing by morally irrelevant factors and shift the public focus from the national shortage of organs for transplant to the needs of a particular child. Yet these appeals are understandable and will likely continue. Recognizing this, we consider appropriate responses by the media, transplant community, hospitals, and individual clinicians.
In this article, I review the ethical issues that arise in the allocation of deceased-donor organs to children and young adults. By analyzing the public media cases of Sarah Murnaghan, Amelia Rivera, and Riley Hancey, I assess whether public appeals to challenge inclusion and exclusion criteria for organ transplantation are ethical and under which circumstances. The issues of pediatric allocation with limited evidence and candidacy affected by factors such as intellectual disability and marijuana use are specifically discussed. Finally, I suggest that ethical public advocacy can coexist with well-evidenced transplant allocation if and when certain conditions (morally defensible criteria, expert evidence, nonprioritization of the poster child, and greater advocacy for organ transplantation in general) are met.
In 2017, the court case over medical treatment of UK infant, Charlie Gard, reached global attention. In this article, I will analyze one of the more distinctive elements of the case. The UK courts concluded that treatment of Charlie Gard was not in his best interests and that it would be permissible to withdraw life-sustaining treatment. However, in addition, the court ruled that Charlie should not be transferred overseas for the treatment that his parents sought, even though specialists in Italy and the US were willing to provide that treatment. Is it ethical to prevent parents from pursuing life-prolonging treatment overseas for their children? If so, when is it ethical to do this? I will outline arguments in defense of obstructing transfer in some situations. I will argue, however, that this is only justified if there is good reason to think that the proposed treatment would cause harm.
Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie’s parents raised £1.3 million (~$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie’s best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States.
In all of medicine, there is perhaps nothing so distressing as bearing witness to a patient’s suffering, especially if that patient is a child. We want to do everything that we can to avoid or alleviate a child’s suffering, yet what do clinicians, ethicists, lawyers, or family members mean when they use the term "suffering," and how should these claims of suffering factor into pediatric decision-making? This question of suffering and what to do about it has played a key role in several prominent pediatric cases over the past decade, including the cases of Charlie Gard, Alfie Evans, and Baby Joseph. These cases have become seminal cases precisely because there is no clear resolution, and the "suffering child" continues to challenge our moral ideals of what it means to live a good life. In this article, I explore the various ways in which the concept of suffering is used in these cases, and I offer new ways in which parents, providers, and all those who work with sick children can approach the suffering child.
The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine’s capacity to both prevent and create suffering has grown exponentially. In pediatric medicine, the ability to stave off death with life-sustaining treatments allows children to survive but also to suffer in ways that are diverse and unprecedented. However, although parents and pediatric clinicians broadly agree that all children can suffer, there is little published literature in which researchers analyze or clarify the concept of pediatric suffering. This gap is worrisome, especially in light of growing concerns that the label of suffering is used to justify end-of-life decision-making and mask quality-of-life determinations for pediatric patients with profound neurologic impairment. Moreover, the awareness that some children can experience suffering but cannot communicate whether and how they are suffering creates a problem. Does the determination of suffering in a nonverbal child lie in the judgement of clinicians or parents? In this article, I will address several important questions related to the suffering of children through an analysis of two prevalent conceptualizations of pediatric suffering and suggest a possible avenue forward for future scholarship.
Death is defined biologically as the irreversible loss of the functioning of the organism as a whole, which typically occurs after the loss of cardiorespiratory function. In 1968, a Harvard committee proposed that death could also be defined neurologically as the irreversible loss of brain function. Brain death has been considered to be equivalent to cardiorespiratory arrest on the basis of the belief that the brain is required to maintain functioning of the organism as a whole and that without the brain, cardiorespiratory arrest and biological death are both rapid and certain. Over the past 20 years, however, this equivalence has been shown to be false on the basis of numerous cases of patients correctly diagnosed as brain-dead who nevertheless continued to survive for many years. The issue reached national attention with the case of Jahi McMath, a young woman diagnosed as brain-dead after a surgical accident, who survived for almost 5 years, mostly at home, supported with a ventilator and tube feedings. The fact that brain death is not biological death has many implications, notably including the concern that procurement of organs from brain-dead donors may not comply with the so-called dead donor rule, which requires that vital organs be procured from patients only after they are dead. In this article, I conclude with an analysis of options for moving forward and among them advocate for reframing brain death as a "social construct," with implicit societal acceptance that patients diagnosed as brain-dead may be treated legally and ethically the same as if they were biologically dead.
Jahi McMath’s story has been an important reference in medicine and ethics as the landscape of the understanding of death by neurologic criteria is shifting, with families actively questioning the once-firm criterion. Palliative care providers have a role in seeking understanding and collaborating with families and clinical teams to navigate the many challenges that arise when a medical team has determined that a child has died, and their parents disagree. In this case-based narrative discussion we consider the complexity of the family experience of brain death.
Criminalization of perinatal substance use disorder and other coercive interventions in pregnancy (such as forced cesarean delivery or involuntary hospitalization for bed rest) directly affect the well-being of children and their families and, potentially, of all women of reproductive capacity. Untenable legal and policy approaches that occasion such incursions not only persist but affect a growing number of women. They are antithetical to healthy pregnancies, healthy children, and healthy families; they have the potential to reduce prenatal care seeking, divert attention and resources away from critical mental health and maternal and child support services, and epigenetically affect maternal and infant bonding. Punitive and coercive interventions contravene long-established guidance by professional associations that advocate for public health approaches and ethical frameworks to guide practice. Harmful policies persist because of motivated reasoning by clinicians, members of the judiciary, and ill-informed legislators who rely on personal experience and anecdote rather than evidence to fashion policy. Compounding the problem are inadequate substance use treatment resources and professional associations that choose not to hold their members accountable for violating their ethical obligations to their patients. Pediatricians must advocate for the cessation of coercive interventions within their institutions and their larger communities. All health care professionals should collaborate at the local, state, and national level to provide policymakers and legislators with data emphasizing the negative effects of punitive and coercive policies aimed at pregnant women and their children.
A central tension in pediatric research ethics arises from our desire to protect children from harm while also allowing progress toward discoveries that could improve child health. A prime example of this tension is research on a controversial yet increasingly common practice: the use of cannabis by women to treat nausea and vomiting of pregnancy. Studies of cannabis use in pregnancy face a combination of ethical hurdles because of the inclusion of pregnant women and involvement of a schedule I controlled substance. Given the growing need for research on the safety and efficacy of cannabis for nausea and vomiting of pregnancy, we reflect on the multiple historical contexts that have contributed to the challenge of studying cannabis use during pregnancy and make a case for the ethical rationale for such research.