Maine Bioethics

I’ve been teaching and working in bioethics for over a decade now, and like any bioethicist, I can rattle off a list of canonical cases: Quinlan, Cruzan, Conroy, Elizabeth Bouvia, Tarasoff, Baby M, Baby Jane Doe, Adam and Molly Nash, Tuskegee, Willowbrook, etc. etc. They each are slotted in to a different ethical lesson, be it about patient rights, informed consent, respect for patient autonomy, or the ethics of research on human subjects.

In bioethics class this week, we discussed the “case” of <a href="“>Don Cowart, a Texas man who was badly burned in a propane explosion in 1973. Cowart begged to be killed or allowed to die, from the moment he was discovered lying in the dirt, third degree burns over 65% of his body, and for months and even years afterwards, during the painful intensive care and rehabilitation process. The Cowart case is usually understood in the context of patient rights. In our textbook, it appears in the section on “Decision Making for Once Competent Patients”, and indeed, it is presented as a textbook case of failure to respect patient autonomy. Cowart may not have had decision making capacity in the initial minutes or days, but surely, his right to determine the course of his own medical care should have been restored shortly thereafter.

The author of the case in the textbook is Dr. Robert White, the first psychiatrist to declare Cowart competent, and more importantly, the one person who was willing to find outside legal help to end Cowart’s nightmare of being treated as a nonperson.

White is one of the few good guys in the story, and his account is interesting and well-written. It’s followed by two bioethcists’ analyses. But like every clinical ethics case, the narrative reflects the viewpoint of the writer, including what he takes to be important, and omitting what he doesn’t.

For this reason, I had my students view a video of Cowart discussing his experience filmed at the University of Virginia in 2002</a>. It’s not just that Cowart has access to a perspective on experiences others lack — which of course, he does — but the details he chooses to include add a dimension of meaning lacking in White’s account. For example,

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.

To many of my students, who can’t imagine being out of touch for a nanosecond, this is an especially chilling part of the story (although it can’t match Cowart’s descriptions of the gruesome, excruciatingly painful, and often ineffective burn “treatments” which he was forced to undergo). It’s a small detail, the telephone, but it seems to symbolize the powerlessness and dearth of human connection he experienced for so long.

The UVa video (transcript here) is a wonderful resource, because it offers up this “case”, not as a case only, but as, first and foremost, a compelling human story. I don’t think the form of presentation dictates our ethical responses. The moderator at UVa suggested that hearing Cowart tell his own story (one of triumph over adversity, a life well lived despite great odds) might make a listener more apt to think the medical staff was right to keep him alive. It had the opposite effect on me and many of my students. But every case study is a kind of “fiction”, as Tod Chambers has written, and exposure to more perspectives can help deepen our understanding.

Wryly observing that he never thought he would take up poetry as a hobby, Cowart concludes with a poem he wrote himself:

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 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 yourself.
Cling 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.

I’m teaching future physicians — hopefully Maine physicians — in this class. What good is a bioethics course if our case studies eschew personal meaning, push human emotion to the margins, and ignore the importance of human connection?