Attorney and Patients' Rights Advocate
Dax's Story: A Severely Burned Man's Thirty-Year Odyssey
October 2, 2002
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 Daxs story.
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.
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.
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,
cant 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 cant do that.
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.
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 dont 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
might lose all my fingers or hand or an arm by the time they got
through the court system. I didnt know how long to expect
at that time. I had no legal training.
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 didnt 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
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 didnt
have any choice. I would have preferred for -- just not to be treated,
to be kept comfortable and be allowed to die.
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
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.
on at John Saley, they didnt 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.
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 dont do
that anymore because we consider it barbaric.
any of you are old enough to remember the days of when we didnt
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 couldnt 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.
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 doctors files without my knowledge,
whether it was ever
the original was ever delivered, I dont
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.
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 dont have any on the burn
ward floor. I said, okay, lets go to the lobby. Every hospital
has pay phones in the lobby. They said no. Burn patients cant
leave the burn ward. I said okay, I will use the one at the nurses
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 arent 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 cant
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.
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 wont go into the details of why there was no follow-up
but it was because of the communication in short
to communicate by phone.
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
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.
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 its warmth and energy flow through you. Listen with the
spirit and you will hear the emotions of your brothers 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)
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.
the Donald Cowart case
that is widely known in
medicine and in bio-ethics. Todays 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.
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.
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 patients 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
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
should physicians have respected Daxs refusal
of further treatment
will often vary according to the mode
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 Daxs own presentation of his case.
today we experienced the last. And many of you, Daxs 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
most people he encounters, he should have been allowed to make his
own decision about discontinuing treatments.
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
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.
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 didnt 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 wouldnt be the kind of life you wanted and
in some ways the implication was that it wouldnt 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.
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.
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 doctors agenda but laying
it out, telling it like it is, not painting it through rose-colored
glasses. The problem with Dr. Byrds argument on the dialogue
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
of us giving our own positions, and I dont 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
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.
reason I changed my name had nothing to do with identity at all.
It was because I didnt 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
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
all those things sound alike even if it was Don or
Donny, I didnt know if there was another Don or Donny standing
five feet away. So I wouldnt know whether to say hi. And you
know, I would find myself, a lot of times I was a little more
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 didnt
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
Childress: That's great, thank you.
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