Disability, Dignity, and the Insidious Push for Death

I am sure I should find a better title for this post but I cannot resist the provocative…

If you are not aware of it, make your way over to the website of the Hastings Center Report and the Hastings Center’s Bioethics Forum blog and look, on the main site, at William J. Peace’s article “Comfort Care and the Denial of Personhood” (July-August 2012 issue) and, on the blog, the invited responses to it. Mr. Peace, a paraplegic since 1978, wrote a deeply disturbing account of his encounter with a grim hospitalist who, for all intents and purposes, pressured him to forego antibiotics to treat an infection, on the grounds that the gravity of his underlying and overall condition, and the potential risks—worst-case scenario and otherwise—just weren’t worth it, and if Mr. Peace chose it, he could forego antibiotics and be kept very comfortable in his dying. Of course, Mr. Peace’s disability was construed as a life-threatening illness, which it was not. The patient was, understandably, horrified, as should we all be.

The commentators on the Hastings Bioethics Forum shared this horror. In the process, they decried a general insensitivity on the part of physicians and society at large toward disabled persons; the fragmentation of medical care as currently practiced; a certain overaggressiveness on the part of transplant physicians seeking donated organs; an impatience with intensivists and other physicians in too much of a hurry to declare certain comas irreversible; and a pervasive pressure for patients and their surrogate decision-makers to agree to forego interventions of all sorts for a variety of reasons, among other things. I found little, if anything, to disagree with in these responses to Mr. Peace’s article.

Oh, and they were concerned about a certain tone-deafness of the bioethics community toward the worries and distrust that disabled people live with routinely vis-à-vis the medical “system.”

[And, on the way, they even spoke of “dignity”—that “useless, stupid” concept that I thought mainstream bioethics had dismissed as a reactionary canard wielded like a club against the unsuspecting by knee-walking, knuckle-dragging troglodytes in fealty to the church, the Bush Administration, and other assorted enemies of enlightenment. But never mind that….]

By all means, go and read these—they are thoughtful and, I think, helpful. My two cents in further comment:

1) We are so inured to the notion of a health care “system” that the momentum it has engendered will make the “physician-patient dyad” (as a separate piece in Hastings put it earlier this year) increasingly irrelevant. Physicians employed by hospitals or public entities or other bodies, responsible more for resource-based decisions than the patient’s needs, held to rigid guidelines promulgated from afar, will be more likely to act as agents of someone other than the patient. The separation of the executioner and the healer is being undone, as Margaret Mead feared. An urgent need and opportunity for the church will be to find a way to help people defend themselves against the “system.”
2) For fans of the so-called Affordable Care Act: this is a big reason why some of us fear the IPAB. We don’t trust them. Are we, perhaps, tarring with too broad a brush? Perhaps. But on what evidence might we be persuaded to do otherwise?
3) Ditto for the regrettable over-reaction two years ago about “death panels.” In that, doctors saw hostility toward appreciating their efforts to discuss with their patients some difficult care and end-of-life decisions. Some in the public saw a commandeering of the timing and nature of those discussions. Again, trust—or lack thereof.
4) As I grow older, I am increasingly suspicious of the organ transplantation industry. Why, did you notice that Dr. Robert Truog wrote to the Wall Street Journal back in March that he has not signed his organ donor card?
5) In all of this, I agree with Steve Phillips and Jerry Risser in their reflections about moral agency and moral status.

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