Stepping into ethically and legally uncertain territory, a New York end-of-life agency has approved a new document that lets people stipulate in advance that they don’t want food or water if they develop severe dementia.
Dementia is a terminal illness, but even in the seven US jurisdictions that allow medical aid-in-dying, it’s not a condition covered by the laws. The reasoning is people with dementia are unable to qualify for measures like Washington State’s Death with Dignity Act because by the time they are eligible to receive a terminal diagnosis with a six-month prognosis, they are no longer deemed mentally competent.
Increasingly, patients are seeking other options, said Dr. Timothy Quill, a palliative care expert at the University of Rochester School of Medicine and longtime advocate of the practice.
“Developing incapacitating dementia is certainly my and a lot of people’s worst nightmare,” Dr. Quill said. “This is an aggressive document. It’s a way of addressing a real problem, which is the prospect of advanced dementia.”
The New York document offers two options: one that requests “comfort feeding”–providing oral food and water if a patient appears to enjoy or allows it during the final stages of the disease–and one that would halt all assisted eating and drinking, even if a patient seems willing to accept it.
Supporters say it’s the strongest effort to date to allow people who want to avoid the ravages of advanced dementia to make their final wishes known–while they still have the ability to do so.
“They do not want their dying prolonged,” said Judith Schwarz, who drafted the document as clinical director for the advocacy group. “This is an informed and thoughtful choice that needs a great deal of reflection and discussion.”
But critics say it’s a disturbing effort to allow withdrawal of basic sustenance from the most vulnerable in society.
“I think oral feeding is basic care,” said Richard Doerflinger, an associate scholar with the Charlotte Lozier Institute, which opposes abortion and euthanasia. “It’s what they want here and now that matters. If they start taking food, you give them food.”
Advance directives typically say nothing about withdrawing hand-feeding of food or fluids. The two options in the New York directive, in contrast, would be invoked only when a patient is diagnosed with moderate or severe dementia, defined as Stages 6 or 7 of a widely used test known as the Functional Assessment Staging Tool (FAST) (pdf). At those stages, patients would be unable to feed themselves or make healthcare decisions.
The new form goes further than a similar dementia directive introduced last year by another group that supports aid-in-dying, End of Life Washington. That document 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.
The New York document says, “My instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth.”
After watching my father die with Parkinson’s and my mother succumb to cancer, I want as much control over how I die as possible. Yes, I could get hit by a bus on the course where I jog each week or simply fail to wake up one morning. But quality of life, especially at the end of it, has been more important to me than the length of it. So much more so now, as the years have flown by, and loved ones have passed at an ever accelerating rate.
Echoing sentiments of John Schappi in an article for Aging Care, my greatest fear is losing my mental capacity due to dementia, stroke, or who knows what, and being unable to prevent my medical care providers from putting my loved ones through the emotional strain of watching what’s left of me slowly dissolve in a solitary bed somewhere in a purely palliative environment.
Questioning the legality of VSED
The legal status of voluntarily stopping eating and drinking (VSED) by advance directive remains untested.
A court case unfolding in British Columbia shows just how tricky these legal issues can be. The case involves an 83-year-old retired nurse with advanced Alzheimer’s disease. Her advance directive specified “no nourishment or liquids” if she became incapacitated. When her husband and daughter attempted to honor her wishes, the care facility where she lives refused, sending the family to court.
Last February, a judge ruled that although a healthcare provider could legally honor such a directive, the feeding should continue in this case in part because the patient swallows food placed in her mouth. That constitutes consent, the judge ruled. The family has appealed.
If swallowing is all it takes to legally invalidate an advance directive, then few VSED directives will survive when challenged.
Schappi says the moral and ethical aspects of VSED are even more puzzling. He’s right. Can one’s current and competent self make decisions on behalf of one’s future demented self–who may find modest pleasure, years later in a life once deemed intolerable? What if that later self asks for, or points to, applesauce?
Unlike the standard advance healthcare directive, which specifies what medical actions should be undertaken if a person is too ill or incapacitated to make decisions, the Alzheimer’s directive covers decisions involving day-to-day choices such as where s/he would like to be treated, who the preferred caregiver is, and who’s authorized to be his/her healthcare agent. The directive ranks healthcare institutions in order of preference, and it even includes a space to discuss wishes pertaining to pet care.Steve's Take: People with #Alzheimer's should put together an advanced directive documenting your #endoflife desires Click To Tweet
Like all directives, this model cannot account for every care decision that may arise. Key opinion leaders from organizations like Death with Dignity suggest writing a personal statement, describing your history, values (including religious beliefs), and any other information that will help people understand or at least have a sense of who the directive’s author is. This allows caregivers to make informed decisions based on more complete information and allows them to fill in the gaps in unanticipated situations.
One of the things this directive does well is reinforce that the person making this document doesn’t want their wishes to be ignored; doesn’t want someone else’s judgment substituted for their own.
No one can precisely predict the exact life changes that will occur during the course of a mental disintegration. No one can predict the type of healthcare setting h/she will need or how quickly the disease will progress.
Robb Miller, former executive director, End of Life Washington, says, “[T]here is just no downside to documenting your wishes. Making advanced directives, whether medical or Alzheimer’s, is a gift. It is a gift to your loved ones, it is gift to your caregivers, it is a gift to your family.”