Patients Have the Right to Choose Death From Bedsores

Arthur L. Caplan, PhD


November 29, 2012

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I am Art Caplan, from the Division of Medical Ethics at the NYU Langone Medical Center in New York, New York. I want to discuss an interesting, and in some ways disturbing, ethics consultation [I had not so long ago].

When we get into issues about stopping care for people, normally we move toward discussions about turning off the ventilator, withdrawing dialysis, or pulling the feeding tube, and we are usually caught up in considerations about how to manage life support when they involve technologies. This case had none of that, but it raises some very interesting and tough moral questions.

An older gentleman, in his eighties, was doing pretty well living by himself but sadly suffered a series of small strokes and wound up in the hospital. He was told that he was going to have to be transferred to a nursing home and his days of independent living in his home were over. He had only 1 daughter who lived about 30 or 40 miles away. This man had been independent. He was a World War II veteran, had distinguished himself in that conflict, and had lived by himself and enjoyed his life since that time, but in hearing that he was going to long-term care, he wanted none of that.

The nurses and people who were caring for him while he was in the hospital said, "One of the things we have to do is turn you because you are in bed and at great risk of developing bad skin ulcers." We all know that it doesn't take much to set that off, particularly in a man in his late eighties with aging and fragile skin. They turned him, but he began to develop small skin ulcers. They [then decided to provide him with] a special air mattress, but then this man began to think about his situation and he said to the doctors and nurses, "I don't want you to turn me anymore; stop turning me." They told him that they could not do that. They explained that these ulcers would become painful and he would develop infections and die. He answered that this is what he wanted to happen. And he refused to give permission to turn him in bed.

This set off quite a controversy at the hospital. Many of the nursing staff said they would not deal with this patient. It is standard of care to turn [immobilized patients]. Others warned that the administration and state authorities would be "all over us" if this man died of skin ulcers, saying that [developing infected skin ulcers] is an adverse event that could basically result in no reimbursement for this man's care and all kinds of penalties because we are not following basic standards that JCAHO and other organizations would expect. Some doctors said he must be depressed, he must be crazy. After evaluating him, the consulting psychiatrist said that he absolutely knows what's going on. He has decided that this is the way he wants to end his life. I cannot give you the excuse that he is somehow less than competent.

This went on for a while. His ulcers got worse. Some began to be infected, and the nurses complained even more loudly, saying that they did not want to care for him in this situation. The hospital was in a small rural area. They asked whether any long-term care facility would take this man. At this point the long-term care facility that was available said no. There was a small hospice program that consisted of volunteers in the community, but they could not deal with him. Ultimately he died in the hospital, with huge ulcers. Basically, his body fell apart, the nursing staff was in an uproar, doctors fighting about whether or not it was right to let this happen. It was quite divisive for the staff morale, and indeed they were investigated about how a person in their hospital could die from infected skin ulcers.

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.

As tough as this case was, it provides lessons to take home. Autonomy and patient rights may have some limits when they begin to affect others and the care that others can get. It may be important to think about this kind of dilemma in advance, and be ready to say as soon as a request comes that this is the patient's right, but it is not something we can accept at this facility. I am Art Caplan at the Division of Medical Ethics at the NYU Langone Medical Center in New York. Thanks for watching.