Coleman and Drake in Hastings Center ‘Bioethics Forum’ – Bill Peace, Bioethics, and Being Pushed to Choose Death
July 11, 2012 | posted by Stephen Drake
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.
Just to let you know, the full text of Bill’s piece is available in HTML at the link you provide, so people can read his full account there.
Thanks, Rachel. I fixed the end instructions with the link – giving you cred for the heads up.
The Hastings Center does indeed have an easy registration, so one can comment. How rare.
I had earlier read some of Bill Peace’s article, which made reread now easier (due to my own severe disabling illness). (An aside: people’s names – how often do people become their name? Peace. Perfect.)
A couple of reactions: terminology. I never heard “hospitalist” before, and figured it out in context, more or less. The word, “bloody ‘debridement’” is new. I will not make any pun on the word “debridement” based on the serious and disturbing nature of Bill Peace’s experience. As a person with severe disabilities, I read all the stories with “it could be me” in back of my mind. I’ll bet that it’s common for those who are disabled and reading but “not so much” for ablebodied readers.
My comment on the Hastings Center site suggested some discussion of neglect as medical treatment, or nontreatment. I have seen/heard poor care given either deliberately or just sloppy by medical personnel. One is the death of someone I know because the private nurse didn’t remove mucus from the patient’s breathing tube and the person I knew, suffocated on her own mucus. It turned out to be the private nurse’s first day, on home care and the partner of the severely disabled individual wasn’t aware enough. That was a decade ago.
A close friend, in Oklahoma, had a persistent bed sore, from sitting 12 hours a day in his wheelchair in his greenhouse for the first time in over 25 years of disability. He’d been thrown from a car after falling asleep while long distance driving as a salesman and hadn’t put his seat belt on. His initial introduction to disability, as he came to terms with being able to only move one shoulder among his limbs, but he could breathe on his own, was a nurse saying, “Why should we have to take care of somebody who didn’t put on his seat belt?” to him. Yes.
Because he got a settlement as a result of the accident, he was not eligible for many services: over income. He paid out of pocket for many things. He kept a gun in his head board, having gone home to his parents house in Oklahoma (accident was in Florida). I met him after 8 years. He turned to his first love, art and we met as disabled artists by mail, networking for over 20 years until his death. He died as a result of that bed sore. He’d spent months abed, having one family member, then another, come to his house (his parents had died) to do the attendant care services from gov’t that he could not get because he was slightly over income due to the settlement decades earlier. He was treated at a local hospital. At one point, he was put in a local nursing home, where I spoke to him. He said they were putting alcoholics with DTs together with disabled people due to budget cutbacks. He said people were screaming all the time. He was able to get back home when his sister moved in. He had kept the gun, he told me, for possible suicide, for 8 years. He decided he wanted to live after 8 years and just kept the gun for protection.
I spoke to him infrequently, but enough to keep track of what was going on. The local hospital couldn’t clear up the bed sore, infected. He went to the nearest VA hospital. He was a veteran of U.S. military service. They couldn’t treat it.
He’d done some great art for their new building’s brochure some years earlier. So he was sent to a regional hospital (which was larger than the local OK hospital and VA hospital), just over the border in Texas. Within 3 weeks he was dead of Mercr staph infection,which he got in the large regional hospital. His humor was present to the end, his sister told me in a phone call about his death.
P.S. CFS/ME (my disabling neurological illness) is the “P.S.” disease. I forgot to look down at my notes. I wanted to say that Bill Peace’s essay mentioned Christine Symanski’s starving herself to death, in one line. That line doesn’t convey the horror the actual experience and the (my word) ugly, participation of her step-mother and father. Not Dead Yet and the DailyMail online (UK) covered her story. Every story that we know about, is chilling. And there are so many we don’t know about because of lack of access to get the word out by so many folks who are severely disabled.
Anyone who is or who knows a person with a disability also knows that Bill Peace’s experience is far from unique; it is becoming the *norm.* My sister is one of six people with a very rare syndrome. During her last hospitalization, a hospitalist came into her room when sis’s husband wasn’t present and attempted to force my beloved sister to sign a form stating that she would only accept palliative care from that point onward! Sis refused to sign and is still receiving live-giving care — but only because of the efforts of her husband and our extended family. None of us was shocked by the actions of the “hospitalist.” This culture of death is so widespread in the medical field that certain lives have become labeled “unworthy”… Again.
That Bill Peace’s essay has been published is truly remarkable. However, has the mainstream press covered it? Has there been an outcry against this practice among those who are not at present affected by this attitude? No and no. (At least, not that I’ve seen or read.) I hope with all my heart that the wall of silence is cracking. I’d love to be a part of tearing it down!