Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

In this article, I distinguish between 4 models for thinking about how to balance the interests of parents, families, and a sick child: (1) the oxygen mask model; (2) the wide interests model; (3) the family interests model; and (4) the direct model. The oxygen mask model – which takes its name from flight attendants' directives to parents to put on their own oxygen mask before putting on their child's – says that parents should consider their own interests only insofar (...) as doing so is, ultimately, good for the sick child. The wide interests model suggests that in doing well by my child I am at the very same time doing well by myself. My interests can, and plausibly do, encompass the interests of others; they are, to that extent, wide. There is, then, no sharp separation between the interests of the sick child and the interests of other family members. In the family interests model, families themselves are seen as having interests that are neither identical to the sum, nor a simple function, of the interests of individual family members. The family has goals, values, and aspirations that are essentially corporate rather than individual. According to this model, these family interests can explain why sacrifices can sometimes be demanded of some family members for the sake of others in a medical setting. Finally, the direct model takes a simpler view of family members' interests; it claims that these interests matter simply on their own and should be taken into account in making treatment decisions for a sick child. This model openly considers the competing interests that parents and other family members often have when caring for a sick child, and advocates for weighing those interests when making decisions for and about the sick child. While there is room for all four models at the bedside, I argue that the direct model should be highlighted in clinical decision-making. (shrink)

For many years the prevailing paradigm for medical decision making for children has been the best interest standard. Recently, some authors have proposed that Mill’s “harm principle” should be used to mediate or to replace the best interest standard. This article critically examines the harm principle movement and identifies serious defects within the project of using Mill’s harm principle for medical decision making for children. While the harm principle proponents successfully highlight some difficulties in present-day use of the best interest (...) standard, the use of the harm principle suffers substantial normative and conceptual problems. A medical decision-making framework for children is suggested, grounded in the four principles. It draws on the best interest standard, incorporates concepts of harm, and provides two questions that can act as guide and limit in medical decision making for children. (shrink)

When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify key (...) questions. I outline and defend a new decision-making tool that includes three parts: identifying the nature of the disagreement, checklists for key elements of the HP and ZPD, and a “think list” of specific questions designed to enhance use of the HP and ZPD in clinical decision making. These tools together will assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution. (shrink)