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Should advance directives enable people with advanced dementia to refuse food and water as a way of hastening death? A 2014 paper examined this issue.1
"It’s a very contentious area. There are big ethical controversies," says Paul T. Menzel, PhD, co-author of the paper and professor of philosophy emeritus at Pacific Lutheran University in Tacoma, WA. Menzel is also affiliate professor in University of Washington’s Department of Bioethics and Humanities.
Menzel’s interest in the issue stemmed from seeing a number of people over the years who had very much wanted their lives not to extend into long years of progressive dementia, "and then lo and behold, that would happen."
In some cases, this even occurred when individuals had well-equipped proxies, made their wishes clear to family members, and had a plan of action in place. "These situations often do not have the kind of acute crises where, because they had an advance directive of withholding life-sustaining treatment, their life would end," says Menzel. Years may pass without an acute care incident.
"The clash that occurs then is that you have a person who, at that time, is not consciously holding the view that it would be best if their life didn’t end in years of this, and that it would be better if it ended sooner," he says. The individual with dementia isn’t cognitively capable of having such wishes, Menzel explains, although he or she had expressed these wishes strongly in the past, and in a certain sense, they are still theirs.
"So you’ve got a tremendous clash between treating a person only on the basis of their current experienced interest, and caring for them on the basis of their past wishes," he says.
Menzel argues that if the patient’s past wishes aren’t taken into account at all, "we are treating them as a person who has never been competent. If we treat them only as the incompetent person they are now, and nothing more, I don’t think that is proper treatment of a human being."
While past wishes don’t automatically trump the patient’s current experienced interests, says Menzel, they can outweigh them. "When do they outweigh them? That’s the question," he says. He believes that at some point in severe dementia, it happens, when survival no longer holds much, if any, subjective value to a person.
It’s well-known that progressive dementia will ultimately lead to feeding problems, notes Menzel. The question is how much assistance providers should then give. "There are a lot of very determined and artful things that a caregiver can do to get a person to eat," he says.
A 2003 study of Oregon hospice nurses reported that the number of patients under their care who had chosen to die by not eating was greater than the number of patients who had chosen to die by physician-assisted suicide.2 "Dying by not eating is not uncomfortable, and some people actually find it better and more comfortable than lethal aid-in-dying," says Menzel.
Could dying by not eating be accomplished in severe dementia by advance directive? One challenge is to make advance directives clear enough for providers to act on them, says Menzel.
Courts have long determined that patients have the legal right to refuse medically assisted tube feeding because it is considered medical treatment. Competent patients can also refuse to eat. "But nursing homes still usually see food and water as personal care, not the kind of treatment that is covered by an advance directive," says Menzel.
It is perfectly legitimate to provide only enough feeding to keep a person comfortable, not to keep them alive long-term, if residents have a directive or clear directions from a proxy stating "comfort feeding only" for severe dementia, says Menzel. "Such comfort feeding only’ need not be a violation of good care. It is already the practice in some nursing homes, but it may become more widespread."
Actual practice guidelines on respecting advance directives that specify no food and water by mouth when an individual reaches a defined stage of severe dementia are likely to come only after cases have made their way through the court system, however.
"But legal rulings on this may be a long time in coming," says Menzel. "The circumstances it would take to get a legal battle on this are probably fairly rare."
Daniel Brauner, MD, associate professor of medicine and co-director of the bioethics consultation service at University of Chicago, says that if a person has an advance directive that says to withhold food and water if he or she has severe dementia, then it should be respected if the patient is no longer expressing any desire to eat or drink.
"My only problem is that you shouldn’t need an advance directive," he says. "Feeding tubes have been clearly shown not to improve matters in persons with advanced dementia and who have stopped eating."
If a patient with advanced dementia stops eating, the standard of care should be to offer them comfort feeding, argues Brauner. The real problem, he says, is that patients shouldn’t need to decide in advance that they don’t want unhelpful therapies.
"We have had enough experience with [gastrostomy] tubes to realize that they are not indicated in patients with advanced dementia who stop eating," says Brauner.
A choice between a therapy that doesn’t help you, and withholding that therapy, is not really a choice at all, says Brauner. "Framing it as a choice maintains the illusion of patient autonomy," he says. "But it just reinforces the notion that we really do have a therapy that can help you — and puts the onus on the patient and their values,’ to decide."
Patients are forced to opt out with advance directives to forego therapies that don’t make sense to begin with, according to Brauner. "Without opting out, patients are given aggressive care as defaults," he says. "The advance directive paradigm doesn’t really work."
Patients need to choose a durable power of attorney to help them make decisions in the future when they can’t, says Brauner, "but the real answer is to improve medical care in the present — care that moves away from the default application of inefficacious therapies."