the NEJM who died from esophageal cancer, described what he sought from his own physicians at the end of his life that may help us to begin to approach these issues. He wrote, “a physician who merely spreads an array of vendibles in front of the patient and then says, ‘Go ahead and choose, it’s your life,’ […] does not warrant the somewhat tarnished but still distinguished title of doctor.”15 Thus, we as physicians should challenge ourselves to recognize that patient autonomy is not synonymous with endless choice, and, moreover, shifting the burden of decision-making from us to our patients or their families is not patient-centered care. Especially when it pertains to end-of-life care, the data suggests that some patients prefer a more physician-driven decision-making process.16 A meaningful inroad towards becoming better physicians for patients at the end of life may start with actively eliciting the preferences of patients about whether they wish to receive recommendations concerning life support. This is not an abnegation of responsibility but rather an approach that is likely to engender trust.
Moreover, while prolonging life is clearly one of the main goals of medicine, I argue that doing so should not be the sine qua non of what it means to care for a patient. The path of least resistance may be to follow the hemodynamic parameters and serological markers as surrogates for preserving life for patients who are intubated, on a ventilator and being fed through a gastrostomy tube in the ICU, but more fundamental to the idea of recognizing and protecting the sanctity of life is the need to understand a patient’s specific perspective on what gives his or her life meaning in a setting replete with depersonalizing devices. Rather than responding to the Nazi legacy of “life unworthy of life” with “life for the sake of life,” we should always attempt to recognize the intrinsic, unconditional quality of human life and to consider each patient’s goals and values when we offer our interventions. And we should understand the choice to die with dignity over living too long a life deprived of meaning.
Conversely, we should also be careful not to hold onto or fetishize an ideal of “the good death” or “death with dignity” that is held by many who work in end-of-life care. Many times in the ICU, when we encounter patients or families who resist a change in code status to DNR/DNI or who continue to desire a full-court press of medical interventions despite our judgment that it will not alter disease course or prognosis their insistence is met with exasperated sighs and the unspoken assumption that they are unreasonable, deluded, religious or some combination of the above. Oftentimes, once they are labeled as such, we stop listening to or eliciting their concerns. We must be accepting of the fact that not everyone meets the end-of-life period with peace and acceptance, but almost all balk at deception and desire clear and compassionate communication from their physicians. As Leah Rosenberg and David Doolittle, palliative care physicians at Massachusetts General Hospital write, “we must be willing to tolerate and support the varied end-of-life choices and experiences of our patients, which are often as fraught and unique as the lives that they led.”17
Leo Alexander, who investigated crimes committed by German physicians under Nazi rule and served as an advisor at the Nuremberg Trials, writes about the subtle shifts in the attitude of physicians that arose from “small beginnings” but resulted in the mass extermination of millions of people:
Whatever proportions these crimes finally assumed, it became evident to all who investigated them that they had started from small beginnings. The beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the acceptance of the attitude, basic in the euthanasia movement, that there is such a
14 Daniela Lamas and Lisa Rosenbaum, Freedom from the Tyranny of Choice — Teaching the End-of-Life Conversation, “New England Journal of Medicine”, 366(18) (2012): 1655-1657.
15 Franz Ingelfinger, Arrogance, “New England Journal of Medicine”, 303(26) (1980): 1507-1511.
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