Why Families Matter

In pediatrics, parents are the presumed surrogate decision-makers for their children. Parents are generally obligated to make decisions in the child's best interest. When assessing what is in the child's best interests, parents should consider the child's experience of illness, potential for suffering (physical or psychological), and ability to understand and tolerate treatment. Yet, parents may consider a variety of factors other than best interest when making treatment decisions for their children. Moreover, parents may equate the child's best interest with their own (or their family's) and make decisions that, in some situations, will place children at significant risk of serious harm. Clinicians may be reluctant to challenge parents due to a perception that their obligations require treating the family "as a unit." After detailing a case from the author's own practice in clinical ethics, this essay will challenge the view that "family-centered" (as opposed to "patient-centered") care is an appropriate ethical model for pediatric decision-making. Specifically, the physician-patient relationship-or, in this context, the pediatrician-child relationshipought not to be reconceptualized into the pediatrician-parent-child relationship, since the latter perspective potentially misidentifies who the patient is and may inadvertently suggest there is warrant for "treating" the family's suffering at the expense of the child's welfare.

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. Pediatrics 2014;134:S81-S86

It is a common practice for family members to bring food to hospitalized loved ones. However, in some cases, this food contravenes a patient's dietary plan. Such situations can create significant tension and distrust between health care professionals and families and may lead the former to doubt a family's willingness or ability to support patient recovery. This case‐study essay offers an ethical analysis of these situations. We draw on Hilde Lindemann's work to argue that providing food to family members is an important way that families discharge their moral functions of caring for their members and holding them in their identities. When family members are hospitalized, other means of performing these functions are limited. Acknowledging the ethical importance of feeding family members alongside the medical need for dietary restrictions, we offer strategies for creative problem‐solving that center diet as a subject for shared decision‐making and regular, ongoing communication among health care professionals, patients, and families.