James A Anderson and Andrew Helmers reflect on the recent Baby W case and call for clarity regarding the limits of both parental and medical authority in medical decision-making for children.
Refusal of blood products has been making headlines recently due to cases involving misinformation that blood transfused from donors vaccinated against COVID-19 has negative health effects. These cases indicate deep fault lines in the already fragile trust the public places in medicine.
The “Baby W” case in New Zealand is a recent, very public example of such a case. Baby W was born with a congenital heart valve disorder requiring life-saving surgery on cardiopulmonary bypass, whose parents refused surgery unless it could be done with blood donated from people unvaccinated against COVID-19. The hospital applied to the High Court to remove Baby W from the care of his parents so surgery could proceed, as their request was not feasible, and the child was deteriorating. The application was granted, and the surgery was performed in early December.
This recent conflict has been resolved. But the stark simplicity of this case belies the challenges involved in navigating the tension between patient- and-family-centered care and the best interests of a child in so many cases that never see a courthouse.
Patient-and-family-centered care is based on “recognition that patients and families are essential allies for health care quality and safety” and aims to foster collaborative approaches to health care that are “responsive to priorities, preferences, and values of patients and their families”. Patient- and family-centered care is a core commitment in paediatrics.
In many jurisdictions, including New Zealand, parental discretion with respect to care for their children is constrained by the best interests standard. Parents are legally obligated to make health care decisions consistent with their child’s best interests.
The challenge is that determining what is in a child’s best interests is rarely a simple matter. Thus, while a commitment to patient- and family-centered care is tempered by a deeper obligation to protect the best interests of children, there is often legitimate disagreement about those interests.
The best interests standard is controversial on other grounds. According to some, this standard requires parents to choose the “best” option. In liberal jurisdictions, restrictions on personal liberty are themselves restricted by the harm principle: people should be free to act however they wish unless their actions cause harm to somebody else. From this perspective, requiring parents to choose the “best” option for their child – instead of merely avoiding harm – constitutes an illegitimate incursion into parental liberty.
For these reasons, some argue that the best interests standard should be replaced by a harm-based approach. Diekema’s Harm Principle and Gillam’s Zone of Parental Discretion are examples of this strategy. According to both, incursions into parental liberty are justified only if parental decisions threaten to cause significant harm to their child.
But here too, it is not so simple: the challenge for any harm-based approach is that judgments about harm are also subject to interpretive difficulties. What counts as (significantly) harmful? Members of the treating team and parents or caregivers can and do disagree about how to answer this question and about the size of the zone of parental discretion.
When such disagreements with parents arise, we are challenged to be clear about the limits of medical authority. In some cases, decision-making turns on considerations that are subjective in nature (such as, “quality of life”). In such circumstances, parents’ views are necessary to determine what is in a child’s best interests or the size of the zone of parental discretion because the decision turns on personal, not medical, considerations. Ignoring this reality undermines trust in medicine in general, and in physicians in particular.
The Baby W case doesn’t teach us much about the nuances of ethical decision-making in paediatrics. But it does point – like the tip of a growing iceberg – to a growing world of disinformation and mistrust that threatens paediatric care.
COVID-19 ushered in a dramatic erosion of trust in medicine. While the outcome of Baby W’s case is unsurprising, the case itself is an eye-opening window into the growing prevalence of health misinformation and how it impacts caregivers’ medical decisions for their child. This situation threatens to place many children in a problematic zone of parental discretion that, unlike Baby W’s case, will evade societal and medical attention. Clarity about the limits of both parental and medical authority is an essential first step towards reclaiming mutual trust between physicians and caregivers, and appropriate care for children.
James A Anderson is a Bioethicist in the Department of Bioethics, The Hospital for Sick Children (SickKids), a Project investigator in the SickKids Research Institute, an Assistant Professor in the Institute for Health Policy, Management and Evaluation at the University of Toronto, and a member of the University’s Joint Centre for Bioethics. @JamesAAnderso16
Andrew Helmers is a Staff Physician, Department of Critical Care Medicine, The Hospital for Sick Children (SickKids) and Clinical Bioethics Associate, Department of Bioethics, SickKids, and an Assistant Professor, Department of Paediatrics at the University of Toronto. @HelmersAndrew