Man with Alzheimer's disease
Jack Kevorkian’s fervid fascination with death made him a deeply unattractive human being. Yet he forced us to confront questions that, much as we might want to, we cannot ignore. Do some of us face fates worse than death, such that it can be rational and reasonable to request help in committing suicide? And should others of us help them to die?
Recent scientific advances make these questions relevant to millions more Americans. Tests are coming that promise to detect the beginning of Alzheimer’s before symptoms of dementia have developed, when the individual is still lucid and competent. One test in the works uses Amyvid, a chemical that (in conjunction with neuroimaging technology) can detect brain plaques before the classic symptoms of Alzheimer’s can be observed. According to the FDA, Amyvid is not yet ready for prime time, but when it or another similar agent is, millions of baby boomers at risk for Alzheimer’s will be potential consumers of it.
(More on TIME.com: New Alzheimer’s Guidelines: Will They Help Doctors Spot the Disease Earlier?)
Because currently there is no cure for Alzheimer’s, early detection of the development of the disease could not promote early treatment. Rather, as researchers and clinicians have noted, early detection could help patients and their families “plan for the future.” Seldom though, do these researchers and clinicians say what this planning might involve, let alone explicitly acknowledge that it could include patients planning their own deaths.
It’s understandable that we have put off a frank discussion about the possibility of such plans. Talking about death is dauntingly hard in general, and seeking one’s own is usually considered a sign of mental illness. The idea that currently functional individuals who test positive for Alzheimer’s might plan to die before the disease devastates their brains, and might seek the assistance of their friends, family or physicians, will strike many as monstrous.
After all, people who test positive cannot know with certainty what Alzheimer’s will be like for them. They cannot know whether the disease might actually bring a new form of happiness, a release from the shackles of normal cognition. They cannot know whether it might be deeply meaningful for their children or partner to care for them. They may be unable to imagine how heartbreakingly hard, if not impossible, it could be for a loving family member to help them die.
(More on TIME.com: New Alzheimer’s Genes: Why They Matter, Even If They Don’t Change Patient Care)
Moreover, none of us can know what sort of slippery slope that request might put our society on; one day we’re giving assistance in dying to Alzheimer’s sufferers, the next we’re doing the same for people who are depressed or disabled or poor or just old.
It is vitally important for us to explore all of the reasons against allowing or assisting Alzheimer’s patients to end their lives. And it is equally important to begin to explore the reasons on the other side. It is time to listen to and take seriously those people who, upon seeing their own parents spend years, even decades, suffering with Alzheimer’s, say that they refuse to expose their partner or children to the same. We cannot ignore competent people who say they would rather die than no longer recognize their children or the partner with whom they built a life. Nor should we dismiss those who say that they can’t themselves afford to pay for years of nursing home care, don’t want their children saddled with that expense, or would rather that the money be used for their grandchildren’s education.
When it becomes possible to detect Alzheimer’s disease before it has progressed, these arguments will no longer be academic. The question for our society, including our legal system, medical practitioners, religious institutions and patient support groups, is whether we will dismiss those who make these arguments as depressed and misguided or whether we will engage with them on their terms.
(More on TIME.com: The Top 10 Medical Breakthroughs of 2010)
One of the prices we pay for our new powers of prediction is difficult conversations about still more difficult choices. Fear should not keep us from trying to imagine whether we can honor the truly informed requests of people who believe that the way of dying that fits best with their understanding of a good life, is to leave before Alzheimer’s fully takes hold. Asking policy makers, clinicians, disease advocates and others to start taking this possibility seriously doesn’t mean we have any neat answers to the myriad, profound questions it raises. We don’t. We do believe, however, that we have an ethical obligation to face these questions, in solidarity with the millions of individuals and families who otherwise will have to face them alone.
Erik Parens is a Senior Research Scholar at The Hastings Center.
Josephine Johnston is a Research Scholar at The Hastings Center.