Back in 2010, our friend, colleague and ally Bill Peace, experienced a long, expensive health crisis when he experienced a stage IV skin breakdown – with a long treatment process that was physically and emotionally grueling by his own accounts.
While Bill was hospitalized – and at one of his lowest points healthwise – he was subjected to a late night visit by a hospitalist. Laying out a grim set of possible outcomes for Bill’s health crisis, the doctor seemed to be urging Bill to just discontinue antibiotics and let himself be given palliative care to be pain-free until the infection took him.
Earlier this year, The Hastings Center Report published Bill’s account of the visit and some resulting reflections on medicine, hospitals, and disability. That’s the context for the essay coauthored by Diane Coleman and myself (Stephen Drake) on the Hastings Center Bioethics Forum. Below is the intro to the commentary on Bill Peace’s published article:
A powerful essay in the July-August Hastings Center Report describes a chilling encounter between a physician and a seriously ill disabled patient. The author, William J. Peace, who has been paralyzed from the waist down since 1978, was hospitalized two years ago with a large, grossly infected stage four wound. While he had no illusions about the gravity of his condition – he would be bedbound for at least six months, dependent on others, and saddled with staggering unreimbursed medical bills – he was unprepared for what a hospital physician said to him. “He informed me I had the right to forego any medication, including the lifesaving antibiotics,” Peace writes. “Although not explicitly stated, the message was loud and clear. I can help you die peacefully.”
Peace concludes that his experience was not an isolated case, but instead was evidence of pervasive discrimination against people with disabilities. “Many people – the physician I met that fateful night included – assume disability is a fate worse than death,” he writes.
Was Peace’s experience unique? Is his assessment accurate? We invited commentaries from leaders in disability rights scholarship and advocacy and a physician recognized for exemplary care of patients at the end of life. Commentaries will appear over the next week or so, with response from Peace. We welcome comments and additional posts from readers. Here is the first commentary, by Diane Coleman and Stephen Drake, of Not Dead Yet.
It’s difficult for us to believe that Bill Peace’s story would really surprise anyone entrenched in bioethics and “end of life” issues. Anyone paying close attention to various news stories and occasional journal articles would be pretty sure there are more stories – some arguably worse – just waiting to be told. For a story, of course, you need a survivor who is able and willing to tell it. And of course, the storyteller needs a venue – we owe Bill Peace and The Hastings Center our thanks for making those elements come together.
The most surprising thing about Bill Peace’s article concerning his experience with the hospitalist is that it appeared in a bioethics journal at all. The second surprising aspect of his experience is that we’re having a publicly accessible discussion about it. The many ways that medical professionals push disabled people toward death are absent from journals – or masked in jargon and euphemisms. Subjects like Bill Peace’s story are certainly absent in venues in which bioethicists engage the public – as though there are discussions that the professional class would prefer we (the public) not be a part of. Recently, however, the wall of silence shows signs of cracking.
The intro and our essay are both available at ‘Comfort Care as Denial of Personhood‘ (a title that I still can’t quite wrap my head around in terms of relevance).
Comments/reactions to our essay (and others to follow) are encouraged, but you have to register – which is a free and relatively painless process.