Dax Cowart died last month at the age of 71.  Wow.  This is the end of a life that has challenged so many of us in bioethics.  His legacy is huge, and many of us have used his story to propel our own thinking over the past almost 50 years.  Dax was a veteran and 25 years old when he and his father were burned in an explosion in the Texas oil fields.  His dad died.  Dax asked the farmer who found him to get a gun and let him shoot himself.  The farmer refused. He was transported to a local hospital and then to the Burn Center at Parkland – in those days without any pain medicine en route for hours.

Over the 14 months in the burn unit and rehab, which at the time utilized minimal pain relief, daily debridement and chlorinated baths, he repeatedly asked the team to stop.  His mother consented to continued treatments. He has said that he started to cooperate with some treatments only when a night nurse firmly told him that these burns would not kill him and that it was up to him to make the best of it.  He lost his eyes, nose, fingers and much of his hearing, with full thickness face and 65% total body burns.  He subsequently attempted suicide several times. But then, he went on to get a law degree, open a practice, and get married.  To the end, he spoke around the country about the importance of patient autonomy, always maintaining that he should have been allowed to end his treatment and life after his injury.

I had the honor of hearing Dax speak at CU several years ago.  His story and his presence were so impactful.  He spoke of the 1 ½ hours it took to get ready with help for each day.  He was guided onto the stage, with his scarred reconstructed face and unseeing eyes, moving with difficulty, but one of the most reflective of people.  He found his life in later years to be acceptable and meaningful.   But he remained adamant that he should have been listened to, and his position on patient rights has triggered so many questions:

When should the medical treating team ignore wishes of a patient for death after a devastating injury?     

What are the limits of “paternalism?”

When do people regain their decisional “balance” (not just “capacity” which a psychiatrist deemed that Dax eventually had) after an acute severe change in health status or several weeks of critical illness?  (see Gerrek link below)

Have we come far enough in our pain management and understanding of the palliative intervention needs for this kind of [physical suffering?

How much should we as providers push to help our patients imagine an unimaginable life after such a life-changing, and what are the boundaries of attempted suasion?

Even as we applaud our medical “successes”, Dax spent his life provoking us to consider that the patient perspective and the patient’s wishes require the most respectful care and consideration we can offer.  Others in his situation have reflected in a more nuanced way about decisions made in the burn unit.  When all is said and done, I can’t say I would have given Dax the gun in that oil field either, but I sure hope I would have had enough morphine.

https://www.nytimes.com/2019/05/15/obituaries/dax-cowart-dead.html

https://journalofethics.ama-assn.org/article/getting-past-dax/2018-06

http://www.bioethics.net/2019/05/a-tribute-for-dax-cowart-1947-2019/