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Pediatric Bioethics

June, 2018

Toward a Better Ethical Framework for Pediatrics

Jeremy Garrett, PhD | Research Associate in Bioethics | Assistant Professor of Pediatrics and Adjunct Professor of Philosophy

There is a long-running debate about which basic ethical standard should guide medical decision-making in the complex domain of pediatrics. Roughly stated, this debate pits a standard which seeks to promote the best interests of the individual child who is a patient against a standard which seeks merely to prevent serious harm to the child while allowing parents maximum discretion beyond that. In my view, both principles are too narrow (though in different respects) to appropriately guide pediatric clinicians, patients and families in the full range of decisions they face.

Pediatric vaccination usefully illustrates the limitations of both standards and the need for a more balanced approach. Primary providers frequently encounter vaccine hesitancy and refusals in the normal course of providing care to children. However, neither basic ethical standard has much to guide a pediatrician’s decision-making when encountering this common ethical issue. On the one hand, in contexts with relatively high community vaccination rates and no active outbreak, vaccine refusal or “alternative scheduling” arguably does not pose significant risk of serious imminent harm to the individual child who is a patient. At the very least, the decision to skip or alter a recommended vaccination in such contexts seems worlds apart from urgent threats posed by child abuse, refusals of lifesaving treatment, or requests for dangerous treatment. Thus, decisions about vaccination may often be within “the zone of parental discretion” (Gillam 2016), constraining the moral agency of pediatricians to act and counsel otherwise. On the other hand, an ethical standard that advises decision-makers to seek only the individual best interest of a single child might rely upon herd immunity, alternative scheduling, or various forms of complementary or alternative medicine, rather than place that child at even the slightest risk of an adverse event or unwanted side effect from vaccines.
Clearly, neither standard is providing a sufficient ethical prescription here. Pediatricians have ethical obligations—to the patient, to the family and to society—that extend beyond protecting children in their practice from imminent harm or maximizing the individual best interest of each child in isolation from others. These include building trusting long-term relationships with the family members, educating them about the safety and efficacy of vaccines and the risks of vaccine-preventable diseases, and pursuing ongoing conversations about vaccination with hesitant parents.

In these conversations, pediatricians should describe their own efforts to understand the evidence in order to make a strong recommendation for vaccination, while at the same time corroborating the family’s concerns and learning more about their values. Moreover, pediatricians should encourage families to reflect on their own ethical obligations, such as the duty of fair play and the duty to minimize the risk of exposing vulnerable people to disease. Indeed, one of the fundamental shortcomings of both the best interest and the harm avoidance standards is their inability to incorporate arguably the strongest ethical grounding for vaccination – the collective good of large-scale vaccine participation and the duty to “play fair” and not free ride off of others. To rely on herd immunity, for example, because of risks to one’s own child, is to make a questionable ethical exception for one’s own case – it is to rely on an arrangement that is only made possible by many people accepting some small burden and risk, while refusing to do so oneself. Pediatricians can, and should, work with families to help them better understand the ethics of these decisions in both their empirical and philosophical dimensions.

So, what would a wider and more balanced ethical standard for pediatrics look like? It is hard to develop the details here, but the general goals are clear. A more promising standard for pediatric ethics would provide guidance and support to patients, families, and clinicians who, working together through an ongoing relationship-building and decision-making process, seek to balance the many interests of the patient who is a child with those of other stakeholders. Such a standard would set clear limits for medical decision-making, but would also provide guidance beyond that bare minimum. In doing so, though, it must weigh future interests against present interests and assess health-related interests against other well-being interests. And, crucially, it must give due weight to the patient’s interests, while also considering the interests of others affected by decisions, including parents, siblings, clinicians, other patients and society. Building such a framework could be an advance on the current fragmentation of pediatric bioethics, the use of incomplete and potentially conflicting principles, and the resultant confusion about rights and obligations. Pediatrics deserves no less.