April 2, 2015

Using Advance Directives To Hasten Death in the Event of Dementia, Stroke, Etc.

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 she wants to end her life by voluntarily stopping eating and drinking (VSED) if she loses her 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 in Carlsbad, Calif., 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 in tomorrow's 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.

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 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.

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."

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Tomorrow, we'll review some examples of VSED advance directives for dementia.


John Schappi said...

These comments were posted on the healthunlocked.com Parkinson's forum:

Many people with these directives are using them in the UK from diagnosis to create a care pathway, it's important that the person living with their parkinsons and their family are in control of their lives including treatments from diagnosis. Some find that if they have the end sorted out it makes living with the condition more controllable and once they have taken control of one end they then intend to be empowered to 'chair' their pathway of care.
Hi Gleeson. This is a very sensible way to end one's life. I remember witnessing an old lady of 95, who lived in the same retirement village with us. She was diagnosed with terminal cancer. She simply booked herself into the Frail Care Centre and told the matron that she did not want to eat anything, nor take any medication, only drink water. Within 3 weeks she died, gracefully and peacefully. She was a lady through and through, and a very sensible one at that.
Totally agree wish there was a pill, my mother took 7 days to die once she stopped eating and drinking/went into a coma and each day felt like months for my dad.

John Schappi said...

Here's another reply that I got in the healthunlocked.com forum that gives some historical background on hospices:

Gleeson having read your blog I am thinking that some of it Is what Hospice is about..... No heroics, and dignity to the end

Cicely Saunders founded the first modern hospice and, more than anybody else, was responsible for establishing the discipline and the culture of palliative care. She introduced effective pain management and insisted that dying people needed dignity, compassion, and respect, as well as rigorous scientific methodology in the testing of treatments. She abolished the prevailing ethic that patients should be cured, that those who could not be cured were a sign of failure, and that it was acceptable and even desirable to lie to them about their prognosis.

She put paid to the notion that dying people should wait until their painkillers had worn off before they received another dose, and scotched the notion that the risk of opiate addiction was an issue in their pain management.

Cicely Saunders became, and perhaps always was, a grande dame and natural leader, and established a reputation in the national consciousness almost on a par with that of Florence Nightingale. She became a folk hero after the journalist Victor Zorza and his wife wrote a persuasive and moving account of their daughter’s death in a hospice.

In 1967 she founded St Christopher’s Hospice in south west London. It is now one of many but is still the leader in the field. It was her personal achievement and has been imitated all over the world. St Christopher’s was the first modern hospice, although there were a number of homes in existence for the dying, most of which were run by religious orders. She raised the funds for the hospice and contributed some of her own money.

Saunders introduced the idea of "total pain," which included the physical, emotional, social, and spiritual dimensions of distress. She regarded each person, whether patient or staff, as an individual to the end.