CPE Reflection - The Dax Cowart Case, 3/26/2012
The Dax Cowart case, as narrated in series of videos done in the early 1980s, is a moving exploration of how societal perspectives on the right to die and patient autonomy have evolved. Considered along with a second video series done in the 1990s and Mr. Cowart’s own writings, the case offers a reflection on the challenges a society has in assessing its own ethics (standards that encompass the norms of the community) while holding to individual ideas of moral behavior (e.g., ideas of right and wrong). (All sources are available on YouTube retrieved with the search "Dax Cowart.")
In 1973, Dax Cowart suffered third-degree burns over two-thirds of his body. Concurrent with the devastating pain and impact of those burns, he was immediately rendered blind and without the use of his hands. From the moment of the accident and through the initial and subsequent treatment, Dax Cowart maintained and strongly expressed a wish to die: He asked the farmer who found him at the accident site to give him a gun so he could end his suffering. He asked to be allowed to die while in the ambulance. He asked to be allowed to die before and during treatment. He produced a video in 1974, while he was in one of the two hospitals where he was treated, titled “Please Let Me Die.” He attempted suicide when he was subsequently released.
His mother also received Mr. Cowart’s repeated requests to die. Her role is especially poignant since she has lost her husband in the same accident. She reports that she relied on the advice of the many physicians in assessing what was “right” for her son. Since Mr. Cowart could not sign consents for treatment, and since his requests for death were initially deemed to be irrational and hysterical, his mother bore primary responsibility for her son’s initial treatment authorizations.
The treatment he received for his burns, reflecting the state of the art of the time and the profound physical crisis of third-degree burns, was extraordinarily painful. Mr. Cowart describes it as being “boiled in oil” and “skinned alive” for several hours each day for a period of months. This torment was experienced by a man was never shown to be anything other than fully alert and mentally competent.
Both in initial interviews and those offered years later, it is clear that his experience of suffering was one altered and defined his world view - in ways that he would have preferred to avoid.
To the extent possible, Mr Cowart attempted to deny treatment, and subsequently accepted treatment only in the hope that he could ultimately leave the hospital and take his own life. I heard in his account of his return to his mother’s home both the frustration of a young man having to return to a childlike state and the amazing endurance of that same “young” man in trying to understand what was possible to him in his current circumstances. Nonetheless, his conclusion was to attempt suicide twice, despite the extraordinarily limited ways in which a sightless man without hands has to accomplish this.
What is most striking to me is the role of his anger at injustice The energy of Mr. Cowart’s anger comes through in his speech, but also in this subsequent life’s work as a businessman, lawyer and advocate for patient’s rights. As an advocate he has repeated his fundamental argument: the decision to accept or deny treatment, to continue in this life or not, was his. While he has attained a measure of happiness in the circumstances that he has found himself in, nonetheless, this was not the life he would have chosen at the time of the accident. He claims the right to have said no and remains passionate in his defense of that right.
“The right to control your own body is a right you’re born with, not something that you have to ask anyone else for, not the government, not your treating physician, not your next-of-kin. No one has the right to amputate your arms or your legs without your consent. No one has the right to remove your internal organs without your consent. No one has the right to force other kinds of medical treatment upon you without your consent. There is no legitimate law, there is no legitimate authority, there is no legitimate power anywhere on the face of this earth that can take the right away from a mentally competent human being and give it to a state, to a federal government, or to any other person.”
As evident in a published 1994 dialog between Dax and one of his physicians, the perspective of years and several life accomplishment have not diminished the animating anger at the injustice he feels he experienced. If anything, those years have sharpened his reasoning in defense of his initial position.
One of his treating physicians, Dr. Robert Burt, argues that, particularly at the time of the injury, Mr. Cowart’s expectations of the outcomes of treatment and of his future life were necessarily colored by his youth, his inexperience with injuries of this type, and his cultural biases as an “able-bodied” person assessing the life experience of a “dis-abled” person. The role of the physician is to take the wishes of the patient seriously, but also to challenge them with new information; in fact, to “argue strenuously” if the doctor believes those wishes to be grounded in false assumptions. Dr. Burt notes that such a conversation is not one that can be had in a matter of moments. It takes time for concepts to be explained, for argument and understanding to take place, and decisions to be reached. The Dr. stands by his original position to deny Mr. Cowart’s request to not be treated and to be allowed to die.
Given that he achieved much of what is accepted as “success” despite his disabilities - professional accomplishment, marriage, and financial independence, it would be easy to look at the full trajectory of Mr. Cowart’s story and serve up rationalizing platitudes: see, he found happiness in the end; his suffering had a purpose; think of all the good he has done; his mother was right; or the one I find most challenging - God only gives us what we can handle.
Further, I am struck by how the conversation would be different if Mr. Cowart had been 17 instead of 26 - the decisions of his mother and guardian would have been unquestioned and his wishes would have had even less weight. This would have been the same outcome if Mr. Cowart had been deemed mentally incompetent or mentally disabled. Alternatively, if disfigurement and treatment were the sole issue versus blindness and disability resulting in the loss of independence; in that instance would the arguments of Dr. Burt about treatment outcomes and future prospects have been better received by the young adult Mr. Cowart? And how different would the conversation be if the current understanding and tools for pain management were in play?
Mr. Cowart is explicit in stating that his primary reason for wishing to die was not about future independence; in fact, he acknowledges that the concerns he had then have been proven to be overblown. His wish to die was motivated by his difficulty in handling the profound “excruciating” pain of his injury and treatment. He believes it was his right at that time - and now - to say he had had enough. Further, he contends his decision was both “informed” and “voluntary” and nonetheless he was denied its execution because to others it was deemed a “bad” decision. Mr. Cowart argues that this is an abrogation of a fundamental right:
Justice Louis Brandeis wrote in one of his Supreme Court opinions: “The makers of our Constitution sought to protect Americans, and their beliefs, their thoughts, their emotions, and their sensations. They conferred as against the government the right to be left alone, the most comprehensive of rights and the right most valued by civilized man.” Warren Burger, who later became chief justice, referred to Justice Brandeis: “Nothing suggests that Justice Brandeis thought an individual possessed these rights only as to sensible beliefs, valid thoughts, reasonable emotions or well-founded sensations. I suggest that he intended to include a great many foolish, unreasonable and even absurd ideas that do not conform, such as refusing medical treatment even at great risk.” Justice Burger did not want to encourage foolish, unreasonable, or absurd conduct, but he did recognize the importance that the individual has in making his or her own decision. He understood that what some of us might think of as foolish, unreasonable, or absurd can also be something that is very precious and dear to someone else.
I view human life and sentience as a unique opportunity. Aware that our span is brief and that we will all die, we nonetheless project ourselves forward - reproduce, create, dream - and like the animals we evolved from - feed, flee, fight, and fornicate. Meaning in this brief span is what we give it. Some choose awareness and compassion. Other the advancement of knowledge and altruism. Others the acquisition and expenditure of wealth. Others may chose endurance or violence. No matter the choice of meaning, it is the energy of personal agency that animates individual actions. It is personal autonomy in making a daily roster of choices that ultimately define who we are and constitute the summative measure of our time.
Ethically, I agree with the principle of patient autonomy. Mr. Cowart’s statement is one I would echo for myself. I do not think there is a moral absolute that can guide this decision; it is a personal one. For me, it would be grounded in my perspective of this human life as a singular opportunity to learn and do and experience. To the extent that I those actions would be compromised, I would have to assess whether I could fulfill my expectations of this life.
I am moved by Mr. Cowarts embodiment of something I have often thought was true - it is often harder to live than to die. Hard in that we know best how to suffer in this life - how to deny, cling, strike out and strike within; but seem less knowledgeable and confident in our ability to endure, and to them receive - let alone to give - empathy and compassion.
Despite his circumstances, Mr. Cowart - who was forced to endure - surmounted his injures and had a life that would be deemed rich by any standard. The man of 26 may or may not have been the man in his 60s who wrote the flagrantly emotional, loving poem that he recited at a July 2011 trial lawyers conference. My Cowart had a life, despite himself, and grew. He may have wanted to grow differently, but this is the one life he got.
