Loose Ends – Last Two Essays on Bill Peace’s ‘Comfort Care As Denial of Personhood’ Up at Hastings Center Bioethics Forum

This is kind of old news by now, but it should be of interest to anyone who read previous posts on this topic.  I’d also urge anyone who hasn’t read Bill Peace’s essay to do so, along with the commentary posted on the Bioethics Forum at the Hastings Center Site.

Just to refresh people’s memories and to provide background info on Bill’s essay and the responses, here’s what we wrote in a previous post:

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.

Below are the links to Bill’s essay, and the three commentaries:

Comfort Care as Denial of Personhood by William J. Peace

Commentaries/Reactions to Comfort Care as Denial of Personhood:

  • Disability Discrimination” by Diane Coleman and Stephen Drake – We discuss evidence that Bill Peace’s account of feeling devalued and threatened in a healthcare setting may be just the tip of an ugly iceberg.
  • Disability Discrimination: Risky Business for “Consenting” Adults” – Philosopher Anita Silvers writes that Bill Peace’s account “stirs a familiar feeling of fear” – and one that may be shared by many visibly disabled people.
  • Disability Discrimination: A Doctor’s View” – Palliative care physician Theresa A. Soriano offers Bill Peace an apology for “the fear and alienation” a member of her own profession caused him.  She outlines what the physician should have done, if he wanted to be helpful; things that are standard practice for those competent in communicating about palliative care.

Bill responded to all three essays in a long and thoughtful post on the Forum blog titled ‘Disability Discrimination – The Author Responds.’  (I suggest you go read this after reading the first three responses)

All of us who responded to Bill’s essay were given a chance to submit a second short essay/post in hopes of a longer discussion.  Apparently, we’re the only ones who took the editors up on the offer.  Our latest contribution to the discussion is titled “End of Life,” Value Judgments and Ending Lives.”  Here’s an excerpt:

Bill’s ordeal offers a prime example of why we almost always put scare quotes around the term “end of life.” It’s clear that the physician was steering Bill toward making “end-of-life” choices, which in this case would be defined as “decisions that will end your life.” This is an increasingly common use of the term – to deceptively describe the assignation of a disabled person to “end-of-life” status by virtue of decisions (chosen or imposed) that will end the person’s life, although the person may not, or even definitely would not, die if the decision were different.

In the coming weeks and months, we’ll be revisiting these confused and conflated terms and continue to try to make more sense of them in context.  I predict there will be no shortage of opportunities to do so.