Thank goodness the days of dying like my mother did twenty years ago, with end stage Alzheimers Disease, are mostly gone. She was tied down in a bed and kept biologically alive with tube feedings because she refused to eat and drink. When I saw her in the nursing home a week before her death, she was unrecognizable. I had to ask a nurse which of the two identically situated women in the room was her.
Despite more than a little kicking and screaming in some sections, the Death With Dignity social reform movement is growing. Terminal coma is commonly used nowadays in hospitals and with hospice patients to hasten death and bring comfort to terminally ill, suffering patients.
In Canada physician assistance with death for terminally ill patients has been the law of the land since June 2016. In its first year 2000 people were given lethal injections in hospitals or their own homes. A majority had cancer.
Physician assistance with death is legal in California, Oregon, Washington, Vermont, Colorado, Hawaii, and the District of Columbia. It isn’t prohibited by Montana’s constitution and multiple legislative attempts to make it illegal since 2009 have failed to pass.
Death with dignity is sometimes referred to as a “right to die.” But I believe it’s more appropriately considered as exercising the right of autonomy, self governance, in determining the time and circumstances of death in special situations. Put the other way around, to deny individuals the freedom of self determination begs the question: If not my own, whose life am I living? Or, to whom do I belong?
Final Exit Network (FEN), the national death with dignity organization I belong to and work with, has a core belief that when mentally competent adults determine their quality of life is no longer acceptable to them, they have the basic human right to end their lives. Situations that justify the right to choose death include terminal illness and/or chronic, progressive disability with intractable pain and suffering and impending loss of selfhood and the ability to make decisions.
Suicide, killing oneself, isn’t illegal. Providing assistance for suicide is illegal in a majority of states. FEN’s unpaid, volunteer members provide education and compassionate, human support for clients who qualify for their free services. FEN takes elaborate precautions to follow the law and protect themselves from allegations of assisting clients with suicide.
To qualify for education and support from FEN, prospective clients provide a letter describing their unceasing, unbearable suffering where there is no reasonable hope for improvement. They provide medical records with evidence of receiving appropriate medical and psychological services and knowledge of other available treatment options. In a phone conversation, and later an in-person interview with a FEN Guide, clients demonstrate mental competency. Conversations take place regarding family and close associates’ knowledge of, and the extent of their support for, clients’ intent to end their lives.
The usual method of death, self deliverance, for FEN clients is a simple, effective, and painless method. Unconsciousness is rapid. Death happens in a few minutes and is peaceful. Most FEN clients choose to have a loved one present at their death. A FEN Guide, who by this time may have become like part of the family, will be present to provide compassionate support if desired. Sometimes there’s a brief ceremony. FEN also provides education for ending life via voluntarily stopping eating and drinking.
With appropriate safeguards to assure that decisions to end intolerable, unrelenting suffering by death are autonomous and made by mentally competent adults, as provided in the FEN protocol, the death with dignity social reform movement will one day seem intuitively obvious if not trivial.
One day people will wonder how my mother’s caregivers could have tortured her body after her mind had deserted her.
No force on earth can stop an idea whose time has come: Victor Hugo.
######################
Jim Waun is a retired anesthesiologist, who writes regularly for newspapers and professional and general circulation magazines. He continues to be involved with medical ethics issues, helping “medical students become more complete physicians instead of merely doctors.”
Jim blogs regularly at <http://www.agingswisdom.com>, This post is a slightly edited version of a post that appeared at his blog and is published with permission of the author.
Jim’s description of his mother’s unnecessarily horrible death serves as a very compelling justification for organizations like FEN. My concern is that under FEN guidelines his mother would not qualify for FEN services because she suffered from dementia and was no longer mentally competent. I am an elderly man whose increasing senior moments portent the onset of Alzheimer’s. Once this became certain, I would like to avail myself of FEN services. In order to qualify as mentally competent I would have to act preemptively, certainly long before I began experiencing unceasing, unbearable suffering. This seems like a Catch 22 situation, I’d be interested to know how FEN would accommodate situations like mine and Jim’s mother.
You bring up a problem that we FEN volunteers often discuss. When Coordinators (those who answer the calls and emails that come in) talk to people who have been diagnosed with dementia, we talk to them about their “window of opportunity.” It can be difficult to know when is the right time. Having someone with whom you can discuss your condition as it progresses can be a big help in your decision-making. You can be accepted for Exit Guide services at an appropriate time after diagnosis and before your conditions worsens. The Exit Guides will teach you about the inert gas method of self-deliverance, and you will then be prepared to hasten your exit when you are ready. That decision is always in your hands. You might be interested in reading Fran Schindler’s thought on this subject at <https://www.thegooddeathsocietyblog.net/2017/08/29/dementia-and-the-right-to-die-no-exit-in-oregon/>.
Thank you for your helpful reply. As a reader of the PPeH I am thoroughly familiar with the nitrogen hypoxic method of self deliverance. In addition I am now prepared to handle the act by myself. If left to my own devices, though I feel I would have to act unnecessarily early in the window of opportunity, not necessarily because I would lose my ability to follow the few simple directions, but out of fear my ability to act intentionally would be compromised early on during cognitive decline. People suffering unendurable pain have the advantage that their faculties of intention become very strong in the presence of pain. In contrast an Alzheimer’s patient may feel no particular discomfort and his/her intention may falter not because of any rational conclusion that suicide is a mistake, but as a consequence of brain pathology undermining the person’s faculties of intention. It is in such circumstances that the presence of a supportive FEN guide may serve to bolster intention. I realize that the guide is forbidden to persuade the client, but acting as a sympathetic listener would I think be very helpful. Where all this is leading is my supposition that knowledge that a guide will be available will allow me to postpone my decision until somewhat later in the window of opportunity …. later than if I knew I had to act entirely alone. Does any of this make any sense?
(From Minneapolis Star Tribune, Sat. June 2, 2018)
“ASSISTED DYING
Here are my terms
When I can no longer knit, when I can no longer read or play piano, when I can no longer prepare my own meals, when I can no longer walk, when I am in constant and unrelenting pain, I want to be done. I don’t want to sit in a nursing home ($$$) waiting to have my diaper changed, be fed, be turned over in bed. Even if my mind is functioning, many of my “roommates” will be in the throes of some sort of dementia – not much stimulating conversation there. When I can no longer do the the things I love – let me go. I would like to go, thank you.
Julie Torgerson, Eagan, MN”
I wrote this for the paper and they printed it. I received one very supportive phone call after it ran, which surprised me. I expected hateful responses. It seems that most people believe in living at any cost. I disagree with the notion that our goal should always be to stay alive. The diminishing of my creative abilities will mean my life no longer brings me joy. The decreasing mobility and increasing pain will cause me to want to have an end to it.
All of us are terminal. I believe there should be an option – a choice – to embrace our final moments. I would like the freedom to control the process. I would like the freedom to take control of my own life and how it ends.
Ms. Torgerson,
My husband is a resident in a long-term care care center specializing in Alzheimer’s and other forms of dementia. Unless a resident is acutely ill or near death, they are not bedridden. Many residents do not even use wheelchairs. Incontinence is common, but not universal. True, it’s not the life none of us want, but it’s not as bleak as you paint it. And researchers are coming closer and closer to medications that could stop disease in a very early stage. Don’t give up hope!
I had a friend of many decades who had Alzheimer’s. For about two years before her death, she seldom opened her eyes and was bedridden. She was spoon-fed each meal and appeared to sleep virtually all the time, except during those meal times. My father’s situation was entirely different. He was up all day and fed himself until three days before his death. While individual cases can add something to our understandings, to get a true picture, we need to look at a broad range of data. As the Alzheimer’s Association explains, late-stage Alzheimer’s can last from a few weeks to a few years. There is great variation.