Many factors in our political and cultural climate have contributed to an increased interest among mainstream Americans for the Dignity in Dying movement. Organizations such as Compassion and Choices, Death with Dignity, and Final Exit Network have worked hard to get out their various messages, but so have many citizens who would be unlikely to join any of these organizations, yet wish to clarify their positions on end-of-life issues with their families and physicians. This is a growing movement that is progressive, reasonable, and hopeful, especially considering the capacity of medicine to prolong life, even when it can no longer offer patients better quality of life.
Affordable Care Act
The Affordable Care Act of 2010 (ACA) has brought some of these end-of-life issues into the cultural landscape. Both the supporters and the detractors of this legislation are concerned that an overwhelming percentage of medical costs occur in the last few weeks and months of a person’s life. President Obama dropped the provision for Medicare coverage of end-of-life consultations, mainly because it threatened passage of the very important ACA.Those who oppose this clause, primarily conservatives who see it as a threat to right-to-life, eventually will have to face the fact that a consultation between patient (if possible), the family, and physicians will almost certainly ease the suffering of everyone involved, even if the only outcome is a better understanding of the situation. These discussions take time, and physicians should be compensated for their time and expertise. The provision does not mandate that any family has to have this guided discussion, simply that Medicare will cover certain costs, if they decide to go ahead.
Movies and TV
Movies and television shows, as well, have explored end-of-life issues and helped us see them in greater perspective. PBS’ Frontline has presented several shows on this topic, most recently a skillfully done inquiry with interviews of patients, families, and physicians from intensive care departments in New York City. In 2009, HBO presented a documentary on Dr. Jack Kevorkian called You Don’t Know Jack, featuring Al Pacino. Later this month [May 26, 2011] HBO will feature another documentary, How to Die in Oregon, which looks into the history and realities of the first state to pass a Death with Dignity Act. This film has won great acclaim wherever it has been shown, mainly at film festivals.
This would be a good place to clarify terms that are often misunderstood. For the purposes of this piece, “euthanasia” means that someone acts in such a way to cause another person’s death, in response to the written or understood request of that person. This is what Jack Kevorkian did when he inserted an IV line into a man who asked for help, a man totally paralyzed by advanced ALS (Lou Gehrig’s disease). Kevorkian deliberately filmed this procedure and allowed 60 Minutes to show it, resulting in his conviction and prison term. The Michigan court convicted him of manslaughter for “assisting in suicide,” a felony. Even in Switzerland and the Netherlands, a person must drink the potion or swallow the pills in order to end life.
By the way, for the purposes of this article, such an act will be called “self-deliverance” not suicide. Self deliverance is the action of a terminally ill person who has virtually no chance of significant improvement and who wants to maintain control over his death. I would call the death of someone like [well-known St. Louisan] I.E. Millstone self-deliverance, because at 102, but apparently not suffering from a terminal illness as we usually understand it, he jumped from the Daniel Boone Bridge over the Missouri River. At 102, with various ailments and the loss of most family and friends, life is a terminal illness from which there will be no significant improvement.
Even the words “physician-assisted death” mean that a suffering person may obtain from a physician the prescription that will bring about death, if the person meets all of the requirements. This kind of death, self administered, is currently legal in the states of Oregon, Washington, and Montana, with legislation pending in Vermont. Only people who can get two physicians to certify that they are within six months of death are eligible. This requirement eliminates those who suffer from Alzheimer’s, advanced Multiple Sclerosis, advanced Parkinson’s, Huntington’s, and other horrendous neurological illnesses for which death is certain, but not necessarily within six months.
Magazine articles and books, too, have raised our consciousness. Dr. Atul Gawande’s piece, “Letting Go,” in the August 2, 2010 issue of The New Yorker has been widely read and quoted. Additionally, Susan Jacoby recently published Never Say Die: The Myth and Marketing of the New Old Age. She employs a quick intelligence and humor to make her main points. Both of these authors urge Americans to be wiser and more informed about old age and end-of-life choices, in order to improve the quality of the time one has left.
Finally, the trial of two Final Exit Network members in the last two weeks in Phoenix, Arizona, further illustrates the dilemma of those who wish to end their lives with dignity/control and of those who try to support them in these beliefs. The fact that elderly Final Exit volunteers would travel across the country, without any financial compensation, to be with someone who is determined to end her life is very touching to me. Unfortunately they faced charges and a lengthy legal procedure as a result. All four Final Exit members who testified during this trial were over 80. The trial was filmed by Frontline, which may or may not use the footage.
The statistics of the Oregon Death with Dignity Act, the oldest in the United States, show that the rates of self-deliverance have not increased much with the passage of the law. Many people get the prescription and feel greater peace of mind, knowing that they have “a way out,” but never fill it. And of those who do self-deliver, pain does not appear to be the major motivation. Rather, the loss of autonomy (91%), loss of ability to engage in activities that make life enjoyable (88%) and fear of loss of dignity (84 %), all are mentioned by patients in Oregon, who see pain or fear of pain (21%) as much less important. (statistics from an article in the May 1, 2011 edition of The Sydney Morning Herald)
Happily, more of us are thinking about these issues and discussing them rationally, a sign of maturity and acceptance.