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