A Question of Life and Death
Should people who are suffering from terminal illnesses be allowed to choose “death with dignity”? Should families of loved ones who are suffering from terminal conditions be allowed to “pull the plug”—or even administer lethal doses of medication?
Whether it’s called Right to Die, Death with Dignity, Compassion and Choices, End of Life Choices, or a variety of other names, legalizing the right to choose to end one’s own suffering, under one’s own terms, has been a topic of controversy for many years. In fact, the name Hemlock Society (once the name of America’s oldest Right to Die organization and the current name of other such organizations) goes back to the days of Socrates, the ancient Greek philosopher.
During the 5th century BC, Socrates, at age 70, was convicted of corrupting the youth of Athens by expounding the ideas of truth and virtue. Rather than accept exile, Socrates chose to drink a tincture of hemlock, a plant that used to punish political prisoners. “Hemlock” has thus come to represent rational suicide, though it does not result in the painless death usually sought by those who choose assisted suicide.
A simple Google search will result in over a million articles and sites about assisted suicide, including non-profit organizations that support assisted suicide and recipes for suicide “cocktails.”
Many people are adamantly opposed to assisted suicide, some because of religious views, others because they fear a decline into euthanasia of persons deemed to be “undesirable,” particularly the poor and disabled. A Google search will turn up just as many articles and sites opposed to assisted suicide as those who argue in favor of it.
Those of a certain age may recognize the name “Dr. Jack Kevorkian.” Dr. Kevorkian, nicknamed “Dr. Death,” was a medical pathologist in Michigan who helped approximately 130 terminally ill people end their lives peacefully and on their own terms during the 1990s. Eventually, he spent eight years in prison, having been convicted of second-degree murder in 1999, but not before a well-publicized campaign for physician-assisted suicide that included a videotape of Kevorkian administering lethal drugs to a patient with Lou Gehrig’s disease (ALS). Kevorkian submitted the videotape to CBS, which broadcast it on its popular newsmagazine show “60 Minutes.”
I can remember watching it, and I clearly remember my daddy telling us that if he ever got to the point that he was being kept alive by machines to “send in Kevorkian.” Despite his wishes, Daddy died in a nursing home, with a feeding tube and oxygen, after a series of small strokes and congestive heart failure. It was not the end he would have chosen.
In the Huntington’s disease community, the rate of both suicide attempts and completed suicides is much higher than that of the general population. According to “Suicidal ideation in Huntington disease: The role of comorbidity,” by Heather Wetzel et al (published in Psychiatry Research in 2011), completed suicide has been reported to be as high as 13 percent, “a seven to twelve-fold increase above that of the general population’s suicide rate of <1%,” while 27.6 percent of individuals with HD report at least one suicide attempt.
Sadly, I am all too familiar with the topic. One of my brothers-in-law declared when he was diagnosed that he would commit suicide when he could no longer care for himself; several years later, he made good on that promise, shooting himself because he “didn’t want to become a burden on anyone.”
My own son had several suicide attempts, two serious enough overdoses to end up in the Intensive Care Unit on a ventilator. He has a DNR (Do Not Resuscitate) order, and because of that, our doctor told me that, legally, he probably should not have been placed on the ventilator. I cried when she told me that. Today, though, he is glad to be alive. That raises the question, “Should someone with a terminal illness be allowed to choose the circumstances of one’s own death, and if so, when and how?”
Many may remember the troubling story of Georgia woman Carol Carr who walked into a nursing home in 2002, and shot to death her two sons who suffered from the late stages of HD. Although she and her advocates considered it a “mercy killing,” she was sentenced to five years in prison and prohibited from taking care of her youngest son should he become ill with HD as well. She was subsequently released from prison after serving two years; her youngest son was diagnosed with HD, and she has not been allowed to care for him.
Across the nation, advocates are attempting to address the issue of Death with Dignity through Advance Directives (living wills, DNRs, and health care proxies). In a handful of states (Oregon, Washington, Vermont, Montana, California, Colorado) and the District of Columbia, advocates have succeeded in having Death with Dignity laws passed. About 20 or so additional states have bills pending. All are modeled on the Oregon law, the first to be passed in the United States (Oct. 27, 1997), which requires, among other things, that a patient must make two oral requests and a written request to his/her physician. The physician and a second physician must then determine that the patient is within six months of death and mentally competent. The patient must also be able to self-administer (legally interpreted as “swallow”) the prescribed lethal drugs.
What, then, are the implications for people who are suffering from terminal neurodegenerative diseases—Alzheimer’s, ALS, Parkinson’s, Huntington’s? Retired New York attorney Alan Pfeffer believes that current legislation overlooks such people and is advocating for laws that are more inclusive.
Alan will be my special guest on “Help 4 HD Live!” on Monday, November 14, at 6:30 p.m. Eastern Standard Time. He will talk about his connection to Huntington’s, the status of Death with Dignity legislation in the United States as well as in Europe and Canada, and will present his argument for what he believes the HD community must do. The chat room will be open for questions and comments.
Don’t miss this important, sensitive, and highly controversial episode!