LIFE! END OF DISCUSSION. END-OF-LIFE DISCUSSIONS IN THE INTENSIVE CARE SETTING
Note: This piece first appeared in the 2018 FASPE Journal. While conversations about death with dignity and end-of-life care have continued to evolve since then, this piece remains a relevant analysis of contemporary practices as well as a helpful recommendation for how we might move forward with ethical decision-making and action in mind.
Yuntong Ma, FASPE
On a cloudless day in June, I stood in front of a barrack at the Auschwitz I camp along with 30 other FASPE Fellows. This brick-red building has not been restored or reconstructed as part of the permanent exhibition of the Auschwitz-Birkenau Memorial and Museum but instead has been preserved in its original state. Here, women and children who were the subject of “scientific” experiments by Nazi physicians were once imprisoned. The walls were dusty and slate colored. Slivers of afternoon sunlight filtered through and illuminated the emptiness of rooms once used for sterilization, freezing and other experiments by Nazi physicians, the most infamous of whom was Josef Mengele. These experiments were painful, often deadly, and performed on prisoners without their consent. In our FASPE seminar discussions, we broached the step-by-step ideological distortions that led Nazi physicians to go from early sterilization experiments and euthanasia of the elderly and disabled—those deemed a burden to society—to the large-scale extermination of Jews and others termed “racial undesirables.”1
Six weeks later, I was working a month-long rotation in a hospital intensive care unit (ICU). One of my patients was an elderly man, who had formerly been a professor of English literature at a prestigious university in India. After a fall leading to a traumatic brain injury, he suffered severe neurologic damage and a prolonged hospital stay due to respiratory failure, bowel obstruction and repeated infections. During our latest meeting with the patient’s family to discuss the goals of care, the attending physician had stated that even after trying “everything possible,” the patient had still not improved, and he therefore recommended withdrawal of interventions and the start of comfort care. Upon hearing this, the patient’s wife became emotional and began hurling a series of accusations at us, stating that we had been “experimenting on him,” that we were “not doing anything for him,” and now that we were done, we were “giving up on him.”
Back in the workroom, the wife’s accusations were easily dismissed by those at the meeting as an irrational, emotional outburst—a failure on her part to confront the reality of her husband’s situation. But the incident disturbed me. How different, I thought, was the situation of patients being cared for in the ICU from that of prisoners being experimented upon in concentration camps? Why did I find that the wife’s words made me think of how Nazi physicians had experimented on prisoners and carried out the involuntary euthanasia of those deemed “incurably sick” or labeled as having “burdensome lives”?2
At a time when the right-to-die and death-with-dignity movements are evolving, when debates around the exorbitant costs of the American healthcare system and “rationing” are ongoing, end-of-life care remains a morally ambiguous landscape that physicians, especially in the intensive-care setting, are required to navigate on a regular basis. Physician recommendations for “do not resuscitate/do not intubate” (DNR/DNI) or non-escalation of interventions can stray close to the territory of determining for another person whether his or her life is “worthy of living.” In the post-Holocaust world, this can evoke the awful legacy of the Nazi designation of “life unworthy of life” (lebensunwertes Leben) for segments of the population targeted for “euthanasia.”3 Patients who are nonverbal or severely disabled are even more vulnerable to these calculations.
After FASPE, I have continued to grapple with how to navigate end-of-life care in the intensive care setting in a manner that is moral and sensitive, in a way that is mindful of history and the many perspectives on the issues that arise in this context. Specifically, my questions are: what are our roles and duties as physicians in counseling patients and their families regarding end-of-life care? And, on what basis do we make our recommendations?
In this paper, I will start by exploring how the reaction to Nazi atrocities has shaped post-Holocaust medical ethics in the United States and how it has led to an ethos that errs on the side of always preserving life, guided by principles of patient autonomy and informed consent. Second, I will examine how dogmatic adherence to these principles can become problematic in the ICU setting. Third, I propose that in order to provide better care to those at the end of their lives, we must begin by challenging and reorienting ourselves with respect to some of the existing orthodoxies in medical ethics.
One of the most significant lessons that I took away from the history of Nazi medical
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1 Peter Fritzsche, Life and Death in the Third Reich (Cambridge, MA: Belknap Press of Harvard University Press, 2009).