Good morning,
A DIGNIFIED END TO LIFE
I am not a serial podcast listener. I prefer books. That said, I stumble into a podcast from time to time when I am on a walk and my phone calls for the morning are finished.
Sometimes podcasts are great ways to catch up with one’s favorite radio shows. Last month, I tuned-in to This American Life, with Ira Glass, and happened upon a thoughtful and moving story of a woman and her journey through the American and Swiss assisted suicide systems. It got me thinking about the choices one makes toward the end of one’s life, particularly when the path is clear and certain.
DEATH COMES TO US ALL
How we and our loved ones exit from this earthly existence is an unknown that is not happy to contemplate. Some will live long lives; others will be cut short. Some will go in their sleep; others will not be so fortunate. It is something about which we seemingly have no choice—but perhaps there can be choice.
Many of us must deal with relatives through a long decline into senility. Others are lucky not to have had to care for someone with declining cognition and sentience. My experience with the former occurred with my mother’s mother, when I was a teenager. I watched the burden of my mother and her sisters of their mother’s premature onset of dementia. It is not for the faint-hearted.
On the other hand, my mother died quickly, without fanfare or build-up. On a Monday morning in 1999, she got out of bed early, turned on the coffee maker and prepared my father’s breakfast, returned to bed to rest a bit and that was all she wrote. Two days later she was gone. It was emblematic of who she was—not seeking the limelight, a caregiver and would never have wanted to have burden others.
My father, who was always concerned about preparing his affairs and preparing my mother for his demise (after all, he was eight years older) ended up living without her until the age of 91, with only his last couple of years showing any real decline, physically or mentally. Most of his time was good—particularly the regular deliveries of decaf mochas!
CHOOSING TO LEAVE GRACEFULLY
There are decisions one can make in choosing one’s exit. Where there is no hope, is there really a need for one more invasive or debilitating therapy? And if one knows an unpleasant decline is inevitable, perhaps there should be a choice to subvert that sentence.
In the episode of This American Life, an author (this is part of what makes the story so vivid) learns her husband has been diagnosed with the premature onset of Alzheimer’s Disease. Her husband determined he did not want to follow this disease down its inevitable decline, losing his mind and humanity along the way. She supported his decision. To them the choice was clear and, faced with these facts, I easily can see making that choice. To be clear, however, there is not a “right” or “wrong” choice—just a personal choice.
Once her husband made the choice to pursue a dignified exit while he was still who he was and with his faculties generally intact, she set about researching assisted suicide in America. Her research into alternatives in the U.S. offered little chance of satisfying her husband’s wishes, due to extraordinarily complex laws and seemingly illogical requirements. Eventually, having studied the legal hurdles imposed under U.S. law, she realized that fulfilling her husband’s wishes would be nearly impossible in the U.S., she turned to Swiss laws for assisted suicide, which make the choice both available and humane.
WHAT DOCTORS THINK
With all the talk about when life begins and the dignity of human life, there is little public discussion of death and the dignity of how life should end. We are, after all, pretty much assured we won’t get out of this alive, regardless of the nature of our exit (fast or slow). Most of us will spend our last days on Earth in an antiseptic hospital room, attached to various devices and surrounded by the beeping, noises, and persistent interruptions of a hospital setting. Some years ago, it was reported that 80% of non-physicians die in hospitals; whereas 20% of physicians die at home. This is telling.
Doctors spend their careers observing the medical facts, from both study and practice, to know that end of life measures often aren’t successful. Yet, they involve pain, frustration, boredom, and/or the theft of valuable time at the end of life. It is high time we tell more people the truth about end of life care and its costs, offering them honest data of the likelihood of success. One example, cited by the physician and author Atul Gawande, is that doctors know the statistics surrounding the third round of chemotherapy. Once two courses of treatment fail, it is nearly universally unsuccessful, while worsening the quality of life in the patient’s last days. Notwithstanding these odds, people continue to hold out hope, convinced that there is a greater chance of success than the statistics demonstrate, even though the costs are high, the inconvenience great, and the prospects of success dismal.
We need to educate people more on their end of life choices. Hospice care and mental health support for those in extremis need to be made more available as part of an honest discussion of end of life issues.
HOW ASSISTED SUICIDE WORKED IN THIS CASE
Back to the story I started with. In her research, author Amy Bloom learned how tough it is to navigate the assisted suicide laws that exist in a dozen or so states. The fact is that assisted suicide, even in the states with the most liberal of laws, is difficult. To wit:
Typically one needs the opinions of at least two doctors that the patient has less than six months to live. This counts out Alzheimer’s and other mental ailments, but many physical ailments as well. After all, one cannot definitively conclude in the majority of cases that a patient’s days are so numbered. Many illnesses can grind on, without a clear timetable, worsening day by day, draining a family financially and emotionally, without any prospect of hope.
The person must be able to state clearly their intent in separate meetings. If there is any mental impairment (or if impairment increases between the separate meetings), it’s nearly impossible for someone who desires an end to their life of satisfying that objective.
The person must be able to hold a glass and swallow pills. This is really an odd one. Apparently, we seem to require that the actual physical act must be performed by the person wanting to die, not accepting that the decision is enough. And, because too allow a family member or nurse to assist someone ending their life might be considered abetting a homicide, it is difficult to fulfill the patient’s wishes. Beyond this, there is the practical impact of this rule, in that there are a number of diseases that render swallowing pills, or holding a glass, all but impossible.
For a taste of the state of the states that allow assisted suicide, https://compassionandchoices.org/resource/states-or-territories-where-medical-aid-in-dying-is-authorized. And from Medical News Today, some history, some arguments, and some facts: https://www.medicalnewstoday.com/articles/182951
FINDING HELP ELSEWHERE
So the author and her husband were off to Zurich. It was a trip they would take together but from which only one of them would return. Notwithstanding the humanity of this act, and the collective agreement of the parties, it was a bittersweet and sad end. The podcast is worth a listen. These are tough issues.
As much as it seems both sides of our political divide will claim to support the idea that a person should be entitled to make decisions for themselves, our country imposes limitations on people’s right to make decisions for themselves. In particular, society tends to infantilize the elderly, while placing nearly insurmountable road blocks in the way of people who quite rationally choose not to suffer and wish to end their lives. The only rational basis I can see for the legal impediments of a person choosing this course is that people with a religious objection to the notion that a person should be free to take their own life want to utilize the power of the state to apply their religious view. As long as it can be demonstrated that there is no one exerting undue influence, and as long as there are tests along the way to confirm the person has considered his or her options, this should be an easy call. Why must we place unreasonable impediments before someone making the last decision of consequence in their own lives?
For a great perspective on the issues of end-of-life matters, I suggest the novel Should We Stay or Should We Go, by Lionel Shriver. The story centers around the decision of a 50-something couple agreeing to a dual suicide pact, having witnessed the decline of their parents. The conceit of the novel is that, once it ends, the author offers multiple versions of the last chapter. It is in these multiple possible endings to the story that the author plumbs the various issues of remorse, guilt, children’s involvement, state control, misgivings, and second-guessing. Shriver is a genius.
Have a great day,
Glenn
From the archives:
This is such an important topic. I am convinced that the majority of pushback comes from those who wish to impose their religious views on others. The older I get, the more I worry about end-of-life autonomy.