The Right to Decide
Much of the focus of the seminar I teach on the Bio-Ethics of Aging relates to the distribution of health care in a world of finite resources. An equally important issue, based on the responses of the participants during the three sessions, is the nature and scope of one’s right to decide how to die.
In this context, I would note that the initial impetus for my interest in bio-ethics was the prolonged and painful process of dying suffered by both of my parents. My father, a devout Catholic, was bedridden and in pain at age 54 with the gruesome complications of diabetes. While his faith made it impossible for him to “hasten” his death, he repeatedly expressed the desire to be allowed to die. The last and most tragic chapter of his illness was that four of the five times his heart failed, his doctor took extraordinary measures to get it pumping again. When resuscitation failed the fifth time, I mourned loss of his life, but celebrated his death. Legally, he had the right to decide to die a year earlier, but he did not have the stamina to overcome his doctor’s refusal to let nature take its course.
The situation was quite different with my mother who hung in there until a week before her 90th birthday. A talented, capable, vibrant woman who romped through eight decades with élan, she made her end-of-life wishes known when she was 70 and still outrageously sound of mind. She handed my brother and me each a packet containing detailed instructions from the Hemlock Society, a guidebook for “hastening” her death if she was terminally ill and could not manage for herself.
Her wishes were excruciatingly clear. But in 1985, who knew about Alzheimers? Her advance directive did not include brain plaques as a “terminal” disease that would trigger her living will. And even if it had, the laws of the U.S. made it impossible for us to honor her wishes and preserve her dignity during her last decade. No longer of sound mind and increasingly unable to take care of herself—the essence of what she wanted to avoid—she did not meet the requirements of those few states that provide for physician-assisted suicide. The tragedy of her illness was that her occasional flashes of coherence—when she begged to have us end it for her—were far too fleeting to meet the legal requirements in even the most compassionate of states.
And so, a decade after my mother’s death, I’m doing my small bit to prevent others from having to endure the painful and prolonged process of dying that my parents went through. In theory, each one of us has the legal right to decide whether to accept or reject health care. Unfortunately, many do not realize that this legally enshrined principle of “patient autonomy” gets short shrift in far too many cases.
One of the prime offenders of patient autonomy, as I saw with my father, is the medical profession. As Atun Gawande observed in his recently released and not-to-be-missed book, Being Mortal, “the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise.” But death is an inevitable part of life. Medical advances can make our lives longer, but they cannot “fix” the fact of our mortality. What is to be hoped is that more and more members of the medical profession will learn to help us live a good life and then die a good death.
State laws also conflict with the concept of patient autonomy and the ostensibly legal standing of an advance directive. The five states that allow “physician-assisted” suicide do so only for patients who have the mental capacity to articulate their desire to die in the presence of two separate physicians, as well as the physical capacity to self-administer the medicine of choice. The mental capacity without the physical ability is not sufficient. An advance directive that explicitly documents the desire for death in the case of mental incapacity is not sufficient.
As I contemplate my next novel, I know that end-of-life issues will be a key plot thread, and the source of a broad range of conflicts between my characters. Over the next year, I anticipate doing a series of blogs on health care issues, blogs that raise critical questions for which there are, at present, not very many answers.
I hope you will find the questions helpful in finding your own answers, in exercising your own right to decide.
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