(From the Spring 2013 issue of Everything Matters: In Patient Care)
Kamil Cák, DMin, BCC, Spiritual & Family Care Coordinator, Ohio Fetal Medicine Collaborative
Ethical decision-making in a pediatric institution is complicated by the fact that most patients have never been autonomous i.e., they have never been able to make binding decisions. Most adults, who may have lost the ability to speak for themselves because of illness or injury, were able to articulate their wishes at some point in their lives. Consequently, there is often someone who knows the incapacitated adult’s preferences when it comes to invasive medical interventions or life-altering decisions. Since most pediatric patients have never had the capacity for meaningful decision-making, parents, relatives and medical professionals have no way of knowing what the patient would want. Yet, their task is to determine what would be best for the child. This "acting so as to promote maximally the good of the individual," as defined by Buchanan and Brock in Deciding for Others: The Ethics of Surrogate Decision Making has been termed the best interest standard. However, determining what would be best is not only a daunting but also, often, an impossible task. Therefore, Kopelman helps define the decision-making process when she writes:
The best interest standard . . . does not require us to act in accord with what is literally best for a child, ignoring all other considerations, or even to presuppose that there is always one best solution shaping duties or guiding actions. Rather, it requires us to focus on the child, and select wisely from among alternatives, while taking into account how our lives are woven together.
This is a principle that members of Nationwide Children's Hospital’s integrated Ethics Committee keep in mind when helping guide the care of seriously ill children. Each year, the Ethics Committee receives a number of requests for guidance in situations where either parents or members of the medical team desire to cease no-longer-beneficial medical interventions. For example, parents have requested that the medical team stop administering artificial (intravenous) nutrition and hydration to their child who was unable to eat by mouth, had an incurable illness and whose symptoms were exacerbated by fluid intake. For the overwhelming majority of children and adults, receiving nutrition by mouth or artificially is a basic need. However, for this child, it became obvious that the burdens of artificially administering nutrition and hydration outweighed the benefits of the intervention. In addition to the medical facts of the case, the child’s father was able to clearly and passionately articulate that the family’s religious convictions would have been violated by what they viewed as artificially prolonging their child’s suffering. Therefore, the parents requested that their convictions be respected by discontinuing artificial nutrition and hydration.
Because infants and young children or incapacitated older children do not have the ability to communicate how they feel or what they would want, the Ethics Committee’s task always involves selecting “wisely from among the alternatives” while working diligently to respect the patient and the family.