Do Not Resuscitate: Accepting Medical Futility and the Death of an Infant
I have spent the past decade of my life learning from incredibly brilliant bioethicists who, throughout my education, challenged me to think critically about the responsibility I would hold as a physician, and more importantly, as a human meeting and caring for others during their most vulnerable moments. I was challenged with hypothetical questions and their associated scenarios: How do you define a human life? What qualities contribute to a meaningful life? What is death? When is it appropriate to die (with or without medical intervention)? And who has the power to decide any of it? Of course, these questions are challenging because there is no clear right answer; the beauty of Bioethics as a discipline is that it is inherently gray…nuanced…you must apply and consider basic principles within the context of the situation, as it affects each human. Only once you have considered differing perspectives can you be sure about your own.
Yet here I am, now a resident physician caring for infants and children, most of whom have complex medical needs, and I am less convinced that I have all of the answers, and more certain of my moral uncertainty.
Three weeks ago, one of my patients died. An infant who was just beginning life, while simultaneously receiving comfort care for her imminent death. She was prenatally diagnosed with a genetic disorder largely considered to be incompatible with life. Although, the more appropriate prognostic description is an incompatibility with an adequate quality of life. And of course, the definition of an “adequate quality of life” will differ depending on who you speak to. Quality of life varies from person to person; it may be decided by how one has lived or wishes to live, or the experiences and relationships and abilities that we possess that make life worth living; or it may be defined by simply existing, taking up space, and loving and being loved by the people closest to you. However, an incompatibility with life itself would mean that one has not existed at all, and that was not the case for my patient.
Regardless, physicians are trained to preserve human life. We are trained to fight for it, fix it, and prolong it. Medicine at its core exists to optimize human health and reduce human suffering as much as possible. So, when we are faced with genetic deviation, a variant of humanness, that strips us of the ability to reduce the suffering of another human being, we are forced to consider the limitations of medicine and the futility of its treatments. And this is no fault of the physician. In this case, some chromosomal variants can have fatal consequences; and if life is prolonged, the infant/child will spend most of their life undergoing medical procedures and treatments or living within the walls of a hospital, with no change in their life expectancy. Thus, it may be easily argued that medicine would not provide anything more than prolonged and unnecessary suffering. However, all chromosomal variants are not the same, and no two patients are the same. And this is where a physician’s clinical judgement must supersede their intrinsic bias toward human differences. Unfortunately, I think this is a skill that only exists with time and intentionality.
I write all of this to say I have not yet mastered the art of recognizing when medical treatment may be futile vs. when an infant may benefit from additional care if we intervene early enough. I have not yet grappled with the responsibility I have to counsel parents through Do Not Resuscitate orders for their newborn infant. I have not yet accepted that sometimes I cannot promise more than 7 days of life to a human. I have yet to master emotional stillness when I am preparing parents for the death of an infant I congratulated them about several hours before. And I am learning to forgive myself for carrying the grief that was never mine to hold.
