A New York group that supports aid-in-dying has approved a new document allowing patients to record in advance that they’ll want to stop eating and drinking if they develop severe dementia.
Approved by End Of Life Choices New York‘s board in late March, the advanced directive would give patients a way of speeding death once they are ravaged by the symptoms of late-stage dementia.
Now questions are swirling about the directive’s legal standing, and if it is determined legal after almost-certain court battles, whether private facilities would agree to accept it.
“Nursing homes could face family pressure — even lawsuits — to prevent spoon feeding if a patient had signed the group’s ‘aggressive advance directive,’” noted Wesley J. Smith, a senior fellow at the Discovery Institute’s Center on Human Exceptionalism, in a column for the National Review. “People should not have the power to force caregivers to starve them to death — any more than they should be able to order their future selves to be placed in front of an open window without a blanket during a blizzard so they die of hypothermia.”
But patients who are in the early stages of dementia or fear they might develop it are looking for options that give them control over the end of their lives, Dr. Timothy Quill, a palliative care expert at the University of Rochester School of Medicine, told Kaiser Health News.
“Developing incapacitating dementia is certainly my and a lot of people’s worst nightmare,” he said. “This is an aggressive document. It’s a way of addressing a real problem, which is the prospect of advanced dementia.”
The document offers patients two alternatives. In one, they request the provision of oral food and water if they appear to enjoy it or allow it during the final stages of the disease. The other option would halt all assisted eating and drinking, even if a patient seems willing to accept it.
“What we are saying with these directives is that while it gives us the autonomy we want now to end our lives on our own terms, it may not provide the flexibility to change if we change our minds,” Gayle Doll, director of the Center on Aging at Kansas State University, told McKnight’s in an email. “In my opinion, this needs a lot more debate before we roll it out.”
Doll says defining the details of “late-stage” is critical.
In the End of Life Choices format, the feeding options could be instituted only after a patient is diagnosed with moderate or severe dementia, defined as Stages 6 or 7 of the Functional Assessment Staging Tool.
A version adopted last year by End of Life Washington says that a person with dementia who accepts food or drink should receive oral nourishment until he or she is unwilling or unable to do so.
Legal scholars and ethicists told Kaiser Health News that directives withdrawing oral assisted feeding are prohibited in several states.
Thaddeus Pope, director of the Health Law Institute at Hamline University in St. Paul, MN, said many care facilities are unlikely to cooperate with this new format, and that doctors can refuse to honor such directives.
“Even solidly legal advance directives do not and cannot ENSURE that wishes are respected,” Pope said in an email. “They can only ‘help assure’ that.”
Directors at End of Life Choices New York consider the document “legally sturdy,” said Judith Schwarz, who drafted the document as clinical director for the advocacy group. But she acknowledges that it will end up in court.
She also told Kaiser Health News people who fill out the directives may be more likely to have them honored if they remain at home.
In any case, the directive is likely to draw attention from scholars and caregiving entities, as well as future patients.
If the definition of late-stage is clearly defined to mean a point where there is little to sustain quality of life, Doll says she “might be among the first to sign up.”
“Few people know starvation and lack of fluids is not an unpleasant way to die,” she said. “There might be something to this, but it seems that we should talk about it for a while before we jump into deep water.”
