As an old man (86 next month) with Parkinson's, I want to maintain control over the way I die. Quality of life has always meant more to me than the length of life. My greatest fear is losing my cognitive function due to dementia, stroke—or whatever—and being unable to stop my medical care providers from putting my nearest and dearest through the emotional strain and financial drain of watching what's left of me slowly disintegrate.
Fortunately, a new way of dealing with this issue is being explored. Ethicists, lawyers, and older adults have begun a debate about whether someone can specify in an advance health directive that he or she wants to end their life by voluntarily stopping eating and drinking (VSED) if they lose their cognitive function.
How VSED works
My introduction to VSED came as I worked on a post about the death last June of John Rehm, the husband of NPR host Diane Rehm. His Parkinson's had progressed to the point where he was no longer able to use his arms or legs. He checked into a hospice and signed a paper with these instructions: no food or drink. He was kept sedated and died nine days later.
Talking with several friends, I learned they had been at the bedside of a friend who went through the same process in hospice. He suffered from kidney failure and didn't want dialysis.
The ethics of assisting in VSED
Hospice and palliative care organizations are debating the ethics of responding to patient requests for help in VSED deaths. Some view intentionally hastening death by fasting an act of suicide that should be discouraged. Others regard VSED as an ethically appropriate decision to forego unwanted life-prolonging measures...that forcing people to eat is as objectionable as imposing some unwanted medical treatment.
A discussion of the ethical and legal pros and cons of this option was presented in an excellent article in the Journal of Hospice and Palliative Nursing last year. That piece reviewed the case of a patient who requested hospice support for her decision to take the VSED exit.
The patient—a nurse who works for a home hospice agency—had a pelvic tumor that had metastasized throughout her abdomen. She was not in great pain or close to death. But she decided the burdens of living outweighed the benefits.
The hospice ethics committee reviewed clinical and legal opinions in the palliative and hospice care literature. They concluded that VSED was an option that should be available to any mentally competent, terminally ill and suffering patient. Here's a summary of that decision:
“After considering the prospective benefits and concerns about informing patients about this option, the committee concluded that, on balance, providing comprehensive information about VSED permits patients to make an informed decision that reflects their personal values and wishes.” The decision to stop eating and drinking was thought to be consistent with the ethical and legal right to forgo unwanted life-prolonging measures. And finally, it was thought that educating patients and families about "what to expect" as the VSED progresses, providing support as the patient dies, and providing a family with bereavement care after death were actions consistent with the hospice value of patient—and family—centered care. Their final report highlighted their concern about the absence of organizational procedures and guidelines to provide direction to clinicians, patients, family members and the hospice organization when future cases of requests for VSED support occurred.
The report also noted that as professional and lay journals run more stories about VSED experiences, future hospice patients may wish to know whether their local hospice has a VSED policy in order to make an informed choice about whether to begin a relationship with a particular hospice.
VSED and dementia
Many of us have advance directives attached to our wills declaring that—if we are terminally ill—we decline cardiopulmonary resuscitation, ventilator, feeding tube, and other life-sustaining devices and procedures.
But can we also specify that we want our healthcare proxy to arrange for VSED if we have dementia?
This issue was explored in a post, "Complexities of Choosing an End Game for Dementia," in the New York Times blog "The New Old Age." That piece noted that dementia—a terminal diagnosis—presents unique obstacles for those who want some control over the way they die. Dementia generally kills slowly, over years, and "there is often no plug to pull," says Dr. Stanley Terman, a psychiatrist who specializes in end-of-life decision-making. He estimates that several hundred people have requested copies of his Natural Dying Will, which we'll address a later post.
Even in the few states where physicians can legally prescribe lethal medication for the terminally ill, the laws require that patients be mentally competent and able to ingest those drugs themselves. But demented patients don't qualify for this so-called “death with dignity.”
These laws also require doctors to certify that death is expected to occur within six months. That's usually impossible to do in cases of Alzheimer's or some other dementia. Those same laws would also typically prevent those of us with Parkinson's from qualifying.
The question for proponents of VSED by advance directive is whether the practice can also provide a humane exit for people who, years later, no longer remember or understand why they wanted to use it. Proponents of the approach acknowledge that dementia patients and their health care proxies will face great controversy if they try to cut off food and drink; so will the professionals who care for them. From infancy, nourishment carries connotations that make stopping it feel different from rejecting medical machinery.
Questioning the legality of VSED
The legal status of 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 health care 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.
The moral and ethical aspects are even more dizzying. 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?
Clearly, we will see many more legal and ethical challenges to advance VSED directives for dementia.
Meanwhile, maybe I'll get a T-shirt that carries the motto of one of the proponents of these directives:
"If I'm not me, I don't want to be."