Wednesday, October 3, 2012

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.


Ken Kleinman said...

I completely agree, Jim. But more humane, i.e., "cleaner" still would be to allow suicide, since refusal of food and liquid is painful to the patient.

Jim Sabin said...

Hi Ken -

It's always good to hear from you - thanks for the comment.

My palliative care and hospital nurse friends tell me that - surprisingly - refusal of food and hydration is typically not painful if good supportive care is given. My sense from reading the case about Mr. Brennan is that his mode of bringing life to an end led to a degree of isolation, as opposed to compassionate caretaking.



Thos. Cochrane said...

Excellent post, Jim, and I agree with just about everything you wrote here.

Let me argue briefly, mostly as a devil's advocate, on behalf of "moral distress" as a potentially good argument for overriding autonomy.

I say that if the staff caring for this patient could come up with a moral argument against allowing a "do not turn" order, we would have to take that seriously.

The trick, of course, is defining moral distress, and carefully distinguishing it from disgust. For example, perhaps it is always wrong to stand by while someone dies of an infection that is preventable by standard nursing care. (I don't buy it, but this would be a moral argument.)

Or, if the staff could plausibly claim that they literally couldn't function in their jobs because of the distress, and that this would significantly affect the care of other patients, this would be a moral argument that we'd have to take seriously, as Caplan tries to argue.

My point is more about the term "moral distress" than about this patient. I tend to agree that autonomy trumps other considerations with respect to this patient (and most patients). I mostly wanted to say that truly moral distress should be given heavy weight. The onus is on the person claiming moral distress, though, to show that the distress is moral rather than visceral.

Jim Sabin said...

Hi Thos -

Thank you for pursuing the important concept of moral distress. It has been an important contributor to ethical thinking. The intense dis-ease nurses have experienced when caught between (a) overly aggressive treatment being foisted on terminally ill patients and (b) their empathic understanding of patient and family values and wishes, has (c) led to deeper reflection on end-of-life care and improved clinical practices.

I agree that if nurses said they couldn't function because of distress the situation should be taken VERY seriously. At one extreme, their distress might point to something seriously wrong that required attention. At the other extreme, their distress might involve reaction to not having their preferences followed, which would not point to an ethical emergency.

Thanks for raising questions that warrant more attention!