Death by bedsores

The September 15 issue of The Lancet has a fascinating article by Arthur Caplan, who is now at the Division of Medical Ethics at New York University Medical Center.

Caplan tells the story of "Harold Brennan" (a pseudonym), an 88 year old man who had lived an independent life until a series of ministrokes left him helpless and bedridden. He was in a community hospital where, despite apparently good care, he developed bedsores. He experienced great pain whenever he was moved and decided he no longer wanted to be turned. When told that this would lead to worsening infections and death his resolve was all the stronger. A psychiatric consultant assessed him as angry but not depressed and competent to make decisions.

The nurses were horrified. How could they stand by and not provide the most basic form of nursing care? The hospital tried to get Mr. Brennan's daughter to come to a conference, but she couldn't bear to see him deteriorating and did not attend.

Mr. Brennan was not turned. As the infections worsened, his roommate was moved to another room. The nurses had to wear masks when they entered the room because of the smell that came from his decaying body. He died after 5 weeks.

Here's Caplan's conclusion:

Must do not turn requests by competent patients be honoured? Patient autonomy is a strong value in the ethical values that guide health care. It is not, however, the only value. It should not be honoured when such requests pose unacceptable risks and dangers to other patients or the ability of staff to function. Where and how these values are to be balanced against patient autonomy is not clear. That they ought to be balanced is. The “simple” case of a request not to turn reveals a key moral truth—that autonomy has its limits.

I discussed the case with a colleague I respect, who felt that Caplan violated the principle of autonomy "egregiously." I would guess that this would currently be the majority view among US physicians.

Caplan makes two basic arguments - one with reference to other patients and one to "the ability of staff to function." The first point is clear. As John Stuart Mill argued so forcefully in On Liberty, If Mr. Brennan's request endangers other patients - even relatively slightly - via the potential for transmitted infection or some other mechanism, his request should be overruled. His liberty does not give allow him to choose a course of action that threatens the well being of other patients.

But what about the nurses? Caplan's reference to "ability of the staff to function" is too vague. If Mr. Brennan's request prevented them from caring for other patients, the harm to others factor would apply. But if his decision causes moral distress ("how can we let him die that way - it's too terrible?") or disgust ("the smell makes me vomit"), we're on shakier grounds. Moral distress and disgust are subjective reactions. If your decision to refuse dialysis or chemotherapy causes moral distress or disgust for me that's my problem, not yours.

Voluntary refusal of food and liquid is a "cleaner" way to end one's life than allowing rampant skin ulcers to fester untreated. But if we are prepared to allow competent persons to refuse intake, which I believe we should, we should be prepared to allow refusal of turning, unless the refusal endangers others.