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DAX COWART

Dax Cowart
Attorney and Patients' Rights Advocate
Dax's Story: A Severely Burned Man's Thirty-Year Odyssey
October 2, 2002
Introduction: In July of 1973, Donald Dax Cowart was severely burned in a propane gas explosion that also killed his father. For several months following the accident, doctors treated his injuries against his will. This is Dax’s story.

Dax Cowart: In 1973, July of 1973, I had just left the active duty airport where I was a pilot to fly in the air force reserve. My plans all along were to become a commercial airline pilot. I loved to fly. My father had been a pilot in WWII and flown in his own plane in the scattle business.

I was also very active in sports growing up. I did all sorts of things on the ranch work. I was an outdoor person. I was not a scholar. I did not enjoy studying. I loved to learn though. But, in short I was not a sedentary type of person.

When the explosion happened in 1973, I was burned so severely and in so much pain that I did not want to live even in the early moments following the explosion. A man who heard my shouts for help came running down the road, I asked him for a gun. He said why. I said, can’t you see I am a dead man? I am going to die anyway. I have got to put myself out of this misery. In a very kind and compassionate caring way, he said, I can’t do that.

I was forcibly treated for fourteen months. First at Parkland Hospital in Dallas for about seven months. And Texas Institute of Rehabilitation and Research in Houston. And then later on at John Saley Burn Ward in Galveston, Texas at the University of Texas Medical Branch.

Pain from both the burns and the treatment was pure hell. At that time there were a lot of myths involved with giving narcotics and the amount of narcotics that could be given. The proper use of the word addiction as opposed to dependence and continuing dependence on pain medication for people once they were out of the hospital and gone, that more recent studies have shown not to be true. So pain care at that time was not good. And the doctors kept lowering the amounts of medication they were giving me. I attempted to refuse treatment. They listened more to my mother than they did to me. I had virtually no say so over anything unless it was something like amputation of my fingers or removal of both eyes, which they wanted to do. And then there was a lot of positioning where I would be in a situation like well, if you don’t agree we will go to court and get a guardian and the guardian will approve it. So all you are doing is throwing it down. So whether…what I thought was going to be just the end joint…my fingers at the tips…I might lose all my fingers or hand or an arm by the time they got through the court system. I didn’t know how long to expect at that time. I had no legal training.

When the doctors said they were going to remove my eyes, I said, you are going to have to get a court to do it this time because I am not consenting. For some reason they decided they didn’t want to go that route. And so what they told me is that your right eye is swelling up three times larger than normal. Even if we save the eye, you will never be able to see out of it again because everything inside had been destroyed. If you want any hope at all of being able to see in the future, we need to keep your left eye…do everything we can to keep it from becoming infected. And so let us at least remove your right eye. I can see they were not going to let me die so I did not want to leave the hospital blind if I could help it. So I consented because I felt I really didn’t have any choice. I would have preferred for -- just not to be treated, to be kept comfortable and be allowed to die.

Some techniques were used at that time…daily tankings or almost daily tankings in the Hubbard tank where they did a debreeding process using brushes, using sharp instruments like scalpels, something of that nature to brush away and cut away the dead and infected tissue. It felt like being…it felt like I was being skinned alive. In the beginning, it took several people to hold me down…my arms, my legs…and I could still overcome them sometimes. And sit up and they would eventually overcome me and push me back down. They used a topical antibiotic. They rotated the topical antibiotics. One of them burned like hell. It is called Sulfamylon. A lot of burn wards and burn doctors…tell me, you know, we quit using it, Sulfamylon now in our burn ward because we consider it barbaric. It is like having alcohol poured over raw flesh except it burns more and it burns longer.

Later on at John Saley, they didn’t use the Sulfamylon but they used Clorox in the tanking solution. And it burned like hell. All I could do when I got back to the room is scream at the top of my lungs knowing it could do no good. And I was on like the seventh or eighth floor and I was told that people walking into the hospital lobby at ground level could hear me and were questioning the hospital people, you know, what is going on up there.

Another one of the treatments was the use of wet to dry bandages. I had no flesh from right about here down to the top of where my boots were that I was wearing during the fire. It was just raw flesh. They would take bandage rolls, soak them with saline solution. And then take the wet bandage and just wrap them like a mummy all the way from my hips down to almost to my ankles. They allowed those bandages to dry so they would adhere to the raw flesh without any skin on it, and then unroll the bandages. That felt like I was being skinned alive. And that is another practice that many hospital people that have worked around the burn wards have said we don’t do that anymore because we consider it barbaric.

If any of you are old enough to remember the days of when we didn’t have the ouch less Band-Aid…when you had a skinned knee or elbow or something and had to pull that Band-Aid off, I can remember many times when I was a kid, I couldn’t hardly stand to pull that Band-Aid off. And that what seemed like a lot of pain, was just nothing compared to unwrapping my whole legs.

You know I had mail read by my doctors. I dictated to a private duty nurse and I found out a few years later that at least some of it ended up in one of my doctor’s files without my knowledge, whether it was ever…the original was ever delivered, I don’t know. But I was trying to find an attorney who would help me file a writ of Habeas Corpus to leave the hospital so I could go home and die or at least be kept comfortable in the hospital and die.

They knew that. They did not want an attorney involved so they would not allow me to use the telephone. I ask them to take me to a pay phone on the floor and they said we don’t have any on the burn ward floor. I said, okay, let’s go to the lobby. Every hospital has pay phones in the lobby. They said no. Burn patients can’t leave the burn ward. I said okay, I will use the one at the nurse’s station. I know you got a phone there because I can hear it ringing all the time. And they said, no that is just for hospital staff. Patients aren’t allowed to use it. I said fine. At my own expense I will pay for the local telephone company to put a telephone in my room. And I will call from my room. And they said no, you can’t do that.

It was finally Dr. White, the psychologist, that the director of the burn ward called in to have me declared mentally incompetent who found me to be perfectly competent to make any decision I wished. He called in a second hospital psychiatrist for a second opinion who agreed with Dr. White that I was competent. I was still forced to stay in the hospital though.

But it is finally Dr. White who contacted a lawyer and it took him a long time to get there. A few weeks. He said he would do what he could but I did not hear back from him. He could not call me. And he was in Dallas which is probably three hundred miles or more from Houston. I won’t go into the details of why there was no follow-up but it was because of the communication in short…inability to communicate by phone.

It is so different today than it was when I first started speaking in 1982. How in tune and students and health care providers are to these issues and how much better their understanding is. And how much better the respect is for patient autonomy where before it was laughed at or scoffed at. So I enjoyed having this time with you.

One of the things that I have done that I never thought I would do before I was in the explosion and blind is I took up writing poetry as a hobby. And I would like to end with the beginning and the end of one of poem as a closing.

The name of it is The Dance of Life. Embrace the day, hold it close to you like the fire and passion of a vibrant, beautiful woman. Feel it’s warmth and energy flow through you. Listen with the spirit and you will hear the emotions of your brother’s heart. Speak with the spirit and your brother will hear the emotions of your heart. And when you and your brother speak and listen to each other with the spirit, your spirits will touch. Be real. Step into your self, plain to all that is you. Release all that is not. For it is here in the deep, blue heaven of these high places that we soar on wings that are our own and ride the currents of our soul. Thank you. (applause)

Dr. Jim Childress: Thanks very much Dax. I am really delighted that Dax could join us again. I have participated with him in programs not only here but elsewhere. And I find his story a compelling one. Dax case…the Donald Cowart case…that is widely known in medicine and in bio-ethics. Today’s program looks at this case not only as a case but also as a narrative of a remarkable human being who has had to re-write his life story because of a terrible accident that severely damaged him and killed his father. But we are also interested in the impact of this story and the continuing story on bio-ethics and medicine and health care. We are interested in another way too…the kinds of changes that have occurred in both bio-ethics and in law and in medicine health care including for example technological developments that could not change at least the early part of that kind of story from happening again. Let me note the context more precisely.

This case started with the accident in 1973. And then the videotape, the interview with Dr. Robert White, with Dax as part of the process of determining whether he was competent to make his own decisions. That occurred in 1974 about ten months after the accident.

Now, note this was only a few years after Elizabeth Kubler Ross’ pioneering work in death and dying. And note that the landmark Karen Ann Quinlan case…the first major case of related to decisions to withhold life sustaining treatment. That did not occur until 1975-76. And then came our societal discussion of advance directives. More broadly more attention is now paid to the patient’s narrative and story. And attention to patient autonomy has greatly increased. Indeed, some would say that it has gone so far that it now subverts not only medical paternalism, but even the moral commitments in medical practice.

Let me make a couple of observations and then raise a couple of questions to continue this conversation. It has been interesting to note as Dax and I discussed last night that responses to this case actually often vary depending on the medium of presentation. How groups answer the question…should physicians have respected Dax’s refusal of further treatment…will often vary according to the mode of presentation.

For example there is a transcript of the interview between Dr. White and Dax Cowart. There is an audiotape. There is a videotape, Please Let Me Die. There is an interactive disc that Marcia mentioned and then there is Dax’s own presentation of his case.

Well today we experienced the last. And many of you, Dax’s own powerful presence, what he has done and continues to do, as one of the strongest arguments against letting him refuse life sustaining treatment. And yet, Dax continues to maintain that while he is happy to be alive and even happier than many people he encounters…maybe most people he encounters, he should have been allowed to make his own decision about discontinuing treatments.

So as part of our conversation, let me raise three questions and I will actually raise them all at one time, Dax. They are related in some ways. At first, when should you have been allowed to make your own decision to refuse life-sustaining treatment? And when do you feel that you were competent to do so or had enough information about your prognosis to make your decision? You noted that after the accident you asked the farmer for a gun. You also apparently asked the rescue squad not to take you to the hospital. The emergency team not to treat you. And then along the way, various medical teams not to treat you. So when should you have been allowed to make the decision?

A second and relating question comes from the kind of argument that Robert Byrd and Yale likes to raise and that is we really need a vigorous dialogue. There should be resistance to the kind of refusal you were making on the part of health care professionals. They should argue with you. They should present the counter case. And after this vigorous dialogue, at some point, you should be allowed to make your decision. And part what it seems to me he is getting at is that just to respect your decision early without this kind of vigorous dialogue may not really be a form of respect for a person but rather basically saying we are sort of indifferent about what happens to you. And this may not be a way to express respect and caring and compassion. So he is arguing for this kind of vigorous encounter. And I would be interested in your response to that.

And then third and last, we are focusing on your thirty-year journey since the accident. And when you refused treatment, you in part emphasized the pain and suffering you were enduring. But you also were looking into the future and trying to imagine a future compared to the past you had had. And that future looked bleak. It looked bleak because it didn’t include very much possibility for the kind of active life you had experienced. And you noted in the video interview with Dr. White that even if you could adjust to a different kind of life, it wouldn’t be the kind of life you wanted and in some ways the implication was that it wouldn’t be you. That there would have to be a new identity. Now some have asked whether your decision to change your name from Donald to Dax at some point along the way represents a willingness now to assume a new identity in accepting and adjusting to the changes that occurred at a result of the accident. So those will be a three questions I would raise and would be grateful for any reflections you have in response.

Dax Cowart: As far as when I should have been allowed to refuse treatment, there is a difference in when I would have liked to have been allowed and what I think the policy should be. I personally would like to as long as I am able to communicate and demonstrate that I am able to reason, I would like to have it from zero point in time. Like at the moment I asked for a gun. That is because of the intensity of pain. I recognize that I think there would be a number of bad decisions that other individuals would feel differently about and be allowed to make it that soon. That is would not be the right decision for them.

As a matter of policy I would say as quickly as possible. Give the patient true and informed consent. Explain to the patient in terms, in common everyday terms and language they can understand the potential risk and benefits of what treatment is being proposed, what the expected prognosis is, what life will probably be like. But informed consent that is not pushing the doctor’s agenda but laying it out, telling it like it is, not painting it through rose-colored glasses. The problem with Dr. Byrd’s argument on the dialogue…the continuing dialogue is when does the end of the day come. And Dr. Byrd and I have spoken on the west coast on the same program…each of us giving our own positions, and I don’t think the end of the day ever comes for Dr. Byrd. And the question in that session, I never heard anything definitively stated when the end of the day comes and you leave it up to a medical doctor who is paternalistic, it will never come. And so I think it is imperative that a mentally competent patient be allowed to make their own decisions. Some doctors argue that a patient cannot make the decision while in that amount of pain…not a competent decision. Or if they are given drugs for the pain, that makes them incompetent because they got drugs on board. Neither one of those are true. I believe certainly that to simply walk away when the patient asks not to be treated is not the way to do it. We need the dialogue. We need honest and open dialogue between the doctor and patient. And drugs can be given to the point where it can impair thinking. But not in the sense that the doctors were stating in my case.

The reason I changed my name had nothing to do with identity at all. It was because I didn’t like my name to begin with. And then after I lost my sight, I was living in a town of about ten thousand. I had grown up there. I was a little town called Henderson, Texas. And it is the kind of place where practically every restaurant you go in, every store, post office, grocery stores, church…anywhere you go, people will know you. And they would say hi Don or hi Donny. And without my sight and with my hearing impairment, especially in a noisy environment, Don or Donny…John or Johnny…Ron or Ronny…all those things sound alike even if it was Don or Donny, I didn’t know if there was another Don or Donny standing five feet away. So I wouldn’t know whether to say hi. And you know, I would find myself, a lot of times I was a little more…embarrassed…a lot easier than I am now. But I would be saying hi and whoever was with me would say, oh they are talking to somebody else. And anyway it simplified things by changing my name to Dax because I didn’t know anybody…I had never run across anybody in my life by that name. I read it in a Harold Robins book years before. And phonetically it had to not sound like any other name. Max and Jack are about the only two things I can get it confused with. Does that cover all three?

Dr. Childress: That's great, thank you.

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