One of the (few, in my book) real achievements of bioethics was the institution of the legal right to refuse unwanted medical treatment. But some things done for patients in a hospital aren’t “medical” precisely, but rather, fall within the parameters of humane care. Keeping a patient warm, for example. Giving them oral food and water. Keeping them clean. And I would submit, turning the patient so they don’t develop bed sores.
But now, the bioethicist Art Caplan — working off the facts of a real case — discusses whether humane care should be withheld if the patient doesn’t want it. From, “You MUST Let My Bedsores Kill Me. You MUST!,” published on Medscape:
What are the lessons to be learned from this refusal-to-be-turned request? For one thing, we need to be sensitive to the idea that it is as likely that someone may say “don’t turn me” as they may say “I don’t want any more dialysis” or “I want you to shut off my ventilator” or “take out my feeding tube.” Institutions may want to establish policies such as: “We always turn people and we do not shut off the heat in a patient’s room. There are certain things we are not going to do, and as soon as someone says they do not want that, we need to talk about moving them home or moving them elsewhere because there are some steps that we will not take here.” Patients need to know that. Hospital staff, ethics committees, and others may want to think about developing policies concerning requests that will not be honored.
At the end of the day, I think this man did have the right to say “don’t touch me.” I think he had the right to say “don’t turn me.” But if his decision started to affect nursing and staff morale and began to become a problem in the delivery of care for others, then I believe that is a factor that has to be considered when deciding whether to honor what he says. The nurses cannot work if the unit becomes a smelly, untenable mess, and although this man had his rights, other people have their rights too. If I thought the care of others was being compromised by these morale issues and staff problems, I might override a patient’s wishes. I might not honor his request in the name of other people’s rights. In my opinion, there may be limits to what you can request when it affects the care that others can receive. That is a tradeoff that has to be weighed at all times.
I think Art is too equivocal here. And more is involved than staff morale and a clean overall environment. Humane care should never be withheld. (For example, if a patient wants to self-starve and is otherwise capable of eating, I think the staff brings the tray even if the patient shouldn’t be force fed.)
Refusing medical treatment — the administration or ingestion of medicines, surgeries, examinations, and the like — should be distinguished legally and morally from refusing non medical support that does not “unnaturally” (I am sure there is better term to use here) altar the body or its natural processes in any way. More to the point, to not turn the patient is to actively harm the patient. (And, by the way, what about psychiatric intervention?) Similarly, a hospital should not leave a patient before an open window in winter without a blanket — even if that is what the patient wants. In other words, patients don’t have the right to force medical professionals to act unprofessionally.
We sure have come to a pretty pass, though, when this has to be discussed.