Art Caplan discusses ethical considerations for ending treatment in people with anorexia.
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-- TRANSCRIPT --
Hi. I'm Art Caplan. I'm at the Division of Medical Ethics at the New York University Grossman School of Medicine.
Recently, I got a call from a psychiatrist friend of mine, and he was grappling with a very difficult case that is not common, but it's come up around North America now a number of times and perhaps elsewhere as well. The case is regarding what to do with young women who just seem not to respond to efforts to treat their anorexia.
Anorexia is that disease often associated with bulimia, where people stop eating, or if they do eat, they regurgitate and end up starving. You can have tremendous weight loss. The death rate in anorexic patients is probably five times what it would be in their normal age bracket. Many of these people who are afflicted with the condition are under 18.
In the US, 4% of females are believed to have suffered from anorexia at one point or another in their lives. The incidence has been going up a little bit, so it's a serious problem and one that doctors have a severe challenge in treating.
I'm not sure anybody really knows what the successful response rate for anorexia, but it can be a tough course to follow. You end up getting into eating disorder clinics, where, oddly enough, some of the most difficult cases are brought and the women stay there.
In fact, if you end up in these eating disorder clinics, the psychiatrist told me, newer patients learn from the older ones how to dissemble, how to lie, and how to get by with their anorexia and bulimia from the old veterans who are often present for third, fourth, or fifth visits in these eating disorder clinics, settings, or specialty facilities. It's a tough condition, and it's a very serious mental health problem.
The psychiatrist had a very simple question: If we treat somebody six, seven, or eight times, they are not responding, and they're down to a life-threatening weight, is it ever ethical to let them die? Can we say, "You don't want to eat, you're refusing to eat, and we're not going to force-feed you. We're not going to try to give you nutrition through tubes or IVs. We're going to accept the fact that you are a futile case."
Now, as we all know, there are situations with the terminally ill where policies have been put in place to say it's futile to try to care for this person. We're not going to do anything more. We're going to shift to palliative care. We're going to shift to supportive, emotional care where we're going to let them die.
That happens even sometimes with children who aren't competent to make that decision. Nonetheless, we do see situations in which their suffering and pain is so bad and there seems nothing more that can be tried or be done to let them go.
Is this condition similar in that, although it's a mental health issue, it still can be a terminal illness? Is it similar in that, for some patients, they just don't respond to care?
My thinking was if we've tried eight, nine, or 10 times, if there were no other alternatives out there beyond what we continue to try again and again, if the experts say it's really futile care and if we are prolonging suffering in the person with anorexia in terms of starvation, frailty, and weakness, then yes, this could be a situation in which life-preserving care could be withdrawn and requests not to eat could be honored, with no effort made to force-feed a patient who's in this situation.
I would insist that there be an ethics committee review. I would insist there be an outside consult. Obviously, discussions have to take place with family about what's going on and why. No doubt there has to be a strong effort to try to explain to the individual patient what's going on, what's going to happen, and what their fate will be if we get into this kind of a situation.
I think we can say that anorexia is as serious for some as cancer. If we open the door to the idea that patients have the right to say they don't want any more medical treatment, even though we admit that anorexia can be distorting of one's competency and abilities, I don't think it's so distorting that we can't honor a request from someone who knows what the treatment is, what their fate is, and who may even have the consent of family members and the ethics committee to say that we just can't treat them anymore and to allow them to die.
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