There is much debate around the world regarding both physician-assisted dying legislation—often called "Death with Dignity"—and expanding the circumstances in which it is applicable. Eight countries and 19 states already permit it in some form.
It is controversial for many reasons. Part of the controversy stems from our cultural discomfort with death. Part of it results from the medical profession's focus on keeping people alive and its fear of malpractice suits. Part of it is religious.
None of the controversy stems from a humane understanding of and caring for those who seek assisted dying. The controversy instead stems from the feelings and discomfort of the rest of society, be they family members, doctors, or strangers.
But in considering the right of someone of "sound mind" to determine, in extreme circumstances, his own end, society should only take into consideration the decision of that individual. Because it is that individual's life, not anyone else's. Family members may disagree, think the person is mad or being unreasonable; doctors may think the person is not being strong, that he or she is giving up. Those perspectives are all irrelevant.
My mother lived to be 106. The last 15 years of her life were spent in a life-care community, first in independent living, then assisted living, then the dementia unit, and finally, the last few years, the nursing home. When she was younger, in her 70s perhaps, she used to say that if she ever got “like that” … meaning not able to care for herself … to give her “the black pill.” That was her way of saying that she wanted to die in that event.
I had ample opportunity to observe the other patients in the nursing home when I would visit her during her lunch. It was a sad sight. In general, the residents were visibly unhappy, regardless of whether they were still to some extent coherent, had extreme dementia, or were in almost coma-like states.
As a result of this experience, I have given much thought to the problems of how we care for our elderly (see my post, “Aging - A Buddhist’s Take on the Stages of Life”). I would argue that what many elderly experience in their last years is cruel but, unfortunately, a usual punishment. This is also mostly true for anyone, regardless of age, who suffers terribly—physically or mentally—as well as those who are disoriented, do not know who they or those close to them are, and otherwise live in "la-la land.".
“How can I say, ‘punishment’?” the reader may ask. I say punishment because the elderly and others have not chosen to end or live their lives in this way; the choices have been made for them. The options are largely dictated by our society, including the medical profession, even if loved ones make specific choices within those parameters.
The problem comes down to this. In the United States, you generally have no control through "advance directives" over the trajectory of your life when the time comes when you are irreversibly suffering terribly or are living in la-la land, but are not diagnosed "terminal." A person only has some control if you come to be terminally ill and live in one of the 19 states that allow physician-assisted dying,
What the law should provide is the opportunity for people, when they are still of sound mind, to state in a formal directive their wishes regarding how they want to live or die, be treated, or cared for when they reach certain irreversible extreme events or stages in their life and are no longer able to direct their own care. I do not speak only of the elderly here because illness and accidents can come at any time.
The precipitating circumstance of U.S. assisted dying legislation—being diagnosed terminal within 6 months—is far too narrow. I would suggest that advance directives regarding physician-assisted death be expanded to include the following:
1. If you have an irreversible physical or mental condition, regardless of cause, that produces constant, or near-constant, pain, which pain can only be reversed by putting you in a heavily sedated state, do you:
- wish all efforts to be made to prolong your life, whether in a nursing home facility or elsewhere,
- Do you wish to be assisted in dying if that is legally permissible, or
- Do you wish to be cared for at home and allowed to die?
2. If, as a consequence of aging or otherwise, you become unable to think coherently and engage in conversation, are disoriented, and don’t know who you or those close to you are, which condition is irreversible, do you: (as above)?
3. If you are diagnosed as terminally ill, do you: (as above)?
4. If you indicate that you wish to be cared for at home and allowed to die, do you wish to refuse any and all treatment for any other illness or condition which, if untreated, would eventually lead to your death or not?
5. If, as a result of such refusal noted above, you are in pain or experience other discomfort, such as intractable nausea and shortness of breath, do you request that you be given all available palliative care, including narcotic medication, to mask any pain and ease any discomfort, or not?
6. If you indicate that you wish to be cared for at home and allowed to die, would a hospice facility be an acceptable alternative or not?
NOTE: In each circumstance, the person should be given options as to what they wish. The point of an advance directive is to make a choice as to how you want to be treated, regardless of what that choice is.
Finally, any directive should provide that, if the person is still of sound mind, and if and when these extreme events occur, they retain the ability to make their own decision about what action they wish to take and at what point.
There are few things more personal or private than one’s physical and mental health. Only by providing individuals while they are still in a sound state of mind with the ability to make such directives will society provide them with the control of their medical care and their life/death, to which each person is entitled.
Ronald L. Hirsch is a teacher, legal aid lawyer, survey researcher, nonprofit executive, consultant, composer, author, and volunteer. He is a graduate of Brown University and the University of Chicago Law School and the author of We Still Hold These Truths. Read more of his writing at www.PreservingAmericanValues.com
