Navigating End-of-Life Decisions Using Informed Nondissent

Abstract

Ursin argues that when responding to surveys, many physicians state that, in their view, there are ethical distinctions between withholding and withdrawing intensive care and other life-sustaining interventions (Ursin 2019). To underscore this position, Ursin discusses some of the findings from his 2014–2018 study of NICU babies in Norway. Ursin notes that Norwegian neonatologists and parents believe it impermissible to withdraw lifeprolonging interventions from a stable, life-supportdependent infant after the critical postpartum period has passed. Ursin argues that the sentiments expressed in this survey support an ethical distinction between withholding and withdrawing an intervention. We agree that parents of critically ill infants and children often have difficulty choosing to withdraw a lifesustaining intervention from a medically stable (i.e., neither improving nor decompensating) critically ill patient with a life-limiting illness. Indeed, we were surprised to read Ursin’s assertion that “To withdraw lifesaving treatment is unjustifiable, unless the situation is worse or withdrawing is interpretable as a way of withholding treatment” (Ursin 2019). Practically speaking, we question how withdrawing could ever be interpreted as “a way of withholding.” Ethically, we believe that withdrawing life-sustaining treatments after the initial postpartum period is often ethically permissible. What we have found, however, is that making such decisions is often agonizing, particularly for parents. The ethical equivalence between withholding and withdrawing life-sustaining treatments is well established and supported by rigorous ethical analysis (Gedge et al. 2007; Orlowski et al. 1993; Winter and Cohen 1999). However, ethical equivalence does not help families make these heart-wrenching decisions. It’s the right concept, but the wrong tool. We provide a brief example to illustrate: Tom, an 8-year-old healthy boy, was swimming at the local pool with some of his friends. They decided to have a contest to see who could swim the length of the pool and back without coming up for air. The boys hyperventilated to decrease their drive to breath, and all dove in and started swimming. Tom passed out from hypoxemia before his hypercapnaic breathing response forced him to the surface, and he drowned. He was taken to the closest hospital, where return of spontaneous circulation was achieved after 50minutes of cardiopulmonary resuscitation (CPR). He was then intubated, placed on an epinephrine drip, and admitted to the pediatric intensive care unit (PICU). After 2 days on the ventilator, Tom was no longer on epinephrine and showed some signs of movement; therefore, his parents insisted that he remain intubated and mechanically ventilated to see whether he would improve. Two weeks later, Tom shows only agonal respirations on spontaneous breathing trials but has remained stable on the ventilator. Neurological evaluation concludes that he will remain in a neurologically devastated state. The parents have repeatedly stated that in their view being alive with minimal neurological activity is not a fulfilling life for Tom, and upon further discussion it is clear that they do not believe maintaining him on the ventilator long term is in Tom’s best interest. Although Tom is stable, based on equivalency and other cogent clinical and ethical rationale, it would be ethically permissible to withdraw the ventilator and allow Tom to die from his neurological failure. How might we help Tom’s parents? We might say to them: “Very smart people have thought a lot about this. They decided that there is no ethical difference between not starting a medical intervention and later stopping that medical intervention. Given how long it took to stabilize Tom in the emergency room, it would have been ethically permissible to not intubate him and allow him to die there. Therefore, it is ethically permissible to remove the breathing tube and let him die now. So you should feel okay about doing that.” While this does convey ethical equivalency, in our experience such a discussion would not help the parents make this agonizing choice. In fact, we would characterize it as callous. Instead, when parents or surrogate decision makers are faced with very difficult choices, such as withdrawing life-prolonging interventions from a medically stable, critically ill patient, we suggest considering an informed nondissent model of decision making. Informed nondissent occurs when the attending physician explains the clinical situation and possible management options (similar to informed consent), but based on conversations with the