This post is a part of our Bioethics in the News series. For more information, click here.
By Ann Mongoven, Ph.D.
The tragic case of a young man’s hunting accident and subsequent death has made national news. The 32-year old Indiana man’s spine was crushed when he fell out of a tree while deer-hunting. The fall left him paralyzed and likely permanently ventilator-dependent. The day after the accident, with the support of family—including his newlywed pregnant wife—the patient asked to have the breathing tube removed. His wife attested he had told her previously he would never want to live in a wheelchair. Physicians honored the request and the man died five hours later, surrounded by loved ones.
Of course the medical team’s decision to support his request for withdrawal of life-sustaining treatment was framed in terms of “respecting autonomy.” Perhaps some on the medical team felt torn by a perceived classic dilemma between autonomy and beneficence. Nonetheless, they apparently equated honoring the request with quintessentially American “tough love.” Indeed some bioethicists have spoken of the case as embodying the essence of autonomy, because the patient himself decided. (NBC News; CNN)
But in this case, the appeal to autonomy was nothing short of idolatry. Its worship separated medicine from the ground of its being: the call to be present to patients and families in the profound identity crisis of serious illness or injury.
The ideal of autonomy diverted attention from the genuine lack of patient autonomy. A day after a shocking accident, patients are in shock–literally and figuratively. Moreover, trauma professionals report that those who have lost functions from sudden injury have the dimmest assessment of their future prospects right after the event. Understandably, they are in deep grief for what has been lost.
Full autonomy consists of two elements, one inner and one external. Inner autonomy is the ability to form an intentional life plan. External autonomy is having the freedom and control to pursue one’s intentional life plan. The terrible fall shattered both for the paralyzed hunter in the short-term. In his shock and grief, he saw only what he could no longer plan to do. And he needed assistance to do anything. Honoring the request for withdrawal of treatment provided the cruelest illusion of control. It facilitated external autonomy when there was no real inner autonomy. The idolatry, then, was more accurately a genuflection to individual freedom rather than to true autonomy.
Death is irreversible. Asking to die is not. A medical version of the precautionary principle argues for time and carefulness before acceding to withdrawal of treatment in such cases, assuming pain and discomfort can be controlled. The precautionary approach generally is standard medical practice. In fact, consistency of desire for withdrawal is one of the factors interpreted as evidence of inner autonomy when patients request removal of life-sustaining treatment. The hunter’s case would be a far different one if he had gotten the best support possible but still desired withdrawal from the ventilator after several weeks, or months. Delay of decision-making amidst shock and grief can honor genuine autonomy. Good physician-communicators regularly assure their patients that they are taking time to be sure they understand what the patient wants. If the time-press for removal was because it was not clear the patient would remain vent-dependent, that would beg questions of staff intent: remove treatment experienced as overburdensome, or actively assist a suicide?
The medical team’s response violated the precautionary principle, ignored what is known about psycho-social experience of trauma, and mistook external autonomy for the whole of autonomy. These ethical errors are so large that the question at hand is not: “Should the medical team have prioritized autonomy over medical beneficence? Rather it is: “What was going on that made them see that as the question?”
In his book, The Patient’s Ordeal, William May criticizes contemporary bioethics’ fascination with dilemmas, as well as its procedural focus on the question of who should decide. In his view, those foci deflect attention from serious “how” questions. Direly injured patients face the ultimate “how” questions: “How can I go on? How can I become to some extent a new person—since I can never be who I was before (the hunter, the athlete, etc.)?” The trauma inflicts the most severe form of identity crisis. May thinks the crucial question for those caring for someone in such extreme identity crisis is: “how can I support him to go on, becoming in some ways a new person?”
May’s book resulted from his anthropological field studies in trauma units. In anthropology he finds clues as to how, indeed, caregivers can support. Drawing on analyses of rites of passage, May argues the trauma patient is in liminal period, betwixt and between the old life to which he cannot return and some new life. Religious and cultural traditions around the world have responded to the psychological perils of liminal periods by developing rites of passage. Rites of passage escort people from childhood to adulthood, singlehood to marriage, death to the beyond. These rituals have a common structure: they symbolically recognize the current social separation of the subject; they provide the subject with special counsel from wise elders who have gone through the same perilous passage; and they re-aggregate the subject into society in a new role. According to May, the first response to patients in dire situations like the fallen hunter should be to recognize the fundamental crisis is an identity crisis. Then, caregivers need to orchestrate supportive rites of passage.
What that means can be humbling to modern medicine. The wise elders here are not those with white coats. Rather, they are those who have gone through the same perilous passage. Were the hunter and his family put in touch with others who had faced sudden paralysis? Such efforts shouldn’t be manipulative. He needn’t be exhorted with comparisons to Christopher Reeve—it would be unfair to expect all to be superman. Real elders available to talk to him and his family might still struggle with questions about whether their life is worth living. But they show that it is possible to form new lives, whose worth can be questioned with real perspective.
Acknowledgement of the patient’s identity crisis is also humbling to modern medicine because it has no quick fix. No technologically racy procedure or new drug can assist. There is only the long haul of listening, of articulating back the realization that life indeed will never be the same, of adjusting palliation and referring to the various support services that can help– slowly over time– to shape a newly imagined life. The idolatry of autonomy is tempting because acceding to the first request for withdrawal is easier than all that. It may also be easier, initially, for some families who are grieving the death of the one they knew. They too are in a liminal period. They too need ritual escort through their passage, so that they can affirm their role in the decision-making years, not only days, after the trauma.
What would have happened if the hunter and his family had been responded to as people in profound identity crisis, instead of as people sure of whom they are? We don’t know. Maybe a new, and ultimately embraced life, would have been shaped. Or maybe, over time a true dilemma between autonomy and beneficence would have emerged, as the patient continued to insist he saw no future and desired removal from life-sustaining treatment. But it was the idolatry of autonomy to perceive the case as starting there.
References:
Almasy S, Martinez M. Paralyzed after falling from tree, hunter and dad-to-be opts to end life. CNN US. November 7, 2013. Retrieved from http://www.cnn.com/2013/11/06/us/paralyzed-indiana-deer-hunter-ends-life
May W. The Patient’s Ordeal. Reprint ed: Indiana University Press; 1991
O’Malley J. Indiana hunter paralyzed in fall chooses to end life support. NBC News Health. November 5, 2013. Retrieved from http://www.nbcnews.com/health/indiana-hunter-paralyzed-fall-chooses-end-life-support-8C11535734
Ann Mongoven, Ph.D., is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences at Michigan State University.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Monday, December 16, 2013. With your participation, we hope to create discussions rich with insights from diverse perspectives. You must provide your name and email address to leave a comment. Your email address will not be made public.
MSU Bioethics 
Thank you for this essay. It constitutes a huge dose of common sense for a profession that appears to be lacking just that.
Thank you for this piece. While serving as a hospital chaplain I was present at several planned extubations (though never under circumstances as intense as the one cited in your essay) and I always walked away with the feeling that the family had made a wise and compassionate decision. Had I simply read about the hunter’s case in the newspaper, I probably would have had the same impression, but your essay leads me to rethink that.
It’s also interesting that the approach you advocate here resonates with the approach a spiritual adviser from a more conservative religious tradition is likely to advocate. From that perspective (painting in broad strokes here), the decision to allow oneself to die is a sin because it contradicts the will of God: If you are still alive, then God still has a plan and purpose for your a life — even though that plan may be radically different from the one you expected. Someone coming from a more liberal/progressive theological background (that’s me) would be much less likely to take that approach, I think.
Thanks again.
Thank you to both commenters! To the chaplain-responder, I note that my own view is different from the one that you characterize as “conservative religious.” My argument against honoring the hunter’s decision is not that “his life is not his own,” but rather that he could not have been fully autonomous at the time of decision. If, contra-fact, he had been given time and support to move beyond the “shock” phase of injury and THEN made an autonomous decision for vent-removal, I would support it.
But the case does raise questions of whether there may be some secular analogue to the religious belief that “one’s life might not be one’s own.” When I listened to a few organic public discussions of the case, people who at first said of course the hunter’s wish should be honored were taken aback when they learned he had a newlywed wife and a baby on the way. Somehow that made the case seem different, and harder, to them. Why? And what would they say if, contra fact, the hunter had insisted he wanted the vent removed while his wife cried “no, please try to live for us!” I am not arguing that his autonomy should be dependent on family support (my argument was that he was non-autonomous despite family support). But the fact that ardent autonomy-celebrators would feel much less celebratory in the hypothetical case reveals some ambivalence about our cultural priority on individual autonomy– ambivalence that goes beyond “religious/secular” or “conservative/liberal” labels.
Thank you again for your comments.