Ten days ago, I wrote about “death control,” encouraging legislation for and use of medical aid/assistance in dying, often referred to as MAID (or MAiD). But as I wrote then, MAiD cannot legally be used for those suffering from severe dementia such as caused by Alzheimer’s disease.
The
Prevalence of Alzheimer’s/Dementia Patients
Alzheimer’s
disease and other forms of acute dementia is a prevalent problem in this
country, and in many countries around the world.
In
the U.S., “The Alzheimer's Association leads the way to end Alzheimer's and all
other dementia—by accelerating global research, driving risk reduction and
early detection, and maximizing quality care and support.”
On
their website,
the Alzheimer’s Association reports that currently more than 6,000,000 Americans
are living with Alzheimer’s.
There can be no doubt but that Alzheimer’s/dementia is a prevalent health problem—and one that is made worse because at present there seems to be no sure way to prevent its onset or to cure it once it begins.
The
Sadness over Alzheimer’s/Dementia Patients
We
don’t/can’t know what sadness an Alzheimer’s/dementia patient himself/herself feels,
but clearly, the family/friends of such patients repeatedly feel great sadness,
as I have personally experienced.
My
mother passed away in February 2008 at the age of 94. She was never diagnosed
as having Alzheimer’s, but for several years her dementia grew worse and worse.
It was a sad time for her family, especially for my father who cared for her at
home until his hospitalization and death in July 2007.
Maybe
it was about a year before she died that I realized the seriousness of, and the
sadness of, my mother’s condition. I made the two-hour drive from my home to
visit her at her home in northwest Missouri. That morning, my sister, who lived
a five-minute walk down the road, came over to visit.
After the three of us had a convivial chat, my sister left to attend to other matters. Right after she left, my mother cheerfully said to me, “That was a nice lady. Who was she?”
At that point, the sadness spurred by talking with a dementia patient hit me as never before. Still, I tried to visit my mother as much as possible and my sister saw her almost daily.
Perhaps
you have heard the story of the man who went to the care facility where his
wife, suffering from severe dementia, was a resident. Her illness had
progressed to the stage that she no longer knew her husband, so someone asked
the man, “Why do you keep going to visit her?”
The
man’s answer, “She may not know who I am, but I know who she is!”
That
is what my sister and I felt about Mom.
MAiD
for Alzheimer’s Patients?
In
two recent blog posts, I have written about using MAiD, medical assistant/aid
in dying. But that is not now, and maybe never will be, an option for Alzheimer’s/dementia
patients.
Both
for the sake of the patients and for the sake of their families, it would seem
that some form of death control would be desirable. But at this time, it is not
legal and does not seem feasible—and it may never be.
As
I have previously explained, MAiD makes it possible for a terminally ill person
to choose to die.
That
decision, though, must be the patient’s own choice and can be no more than six months
before their death as prognosticated by competent doctors. For Alzheimer’s/ dementia
patients, however, it is either too soon to make that fateful choice or too
late for them to be able to do so.
So,
what can/should be done? At this time, perhaps all that can be done is to provide
for the comfort of the patient and then to practice “passive euthanasia.”
That
is, whenever someone with acute Alzheimer’s/dementia develops a serious illness,
see that their pain/suffering is mitigated as much as possible and then allow
nature to take its course, rejecting medical means to keep the patient alive.
That's a very rational approach, Leroy. In a sense, this is exactly how my father in a demented state died. It did seem the most humane rather than continue various radical surgeries to cope with serious heart disease, which actually preceded the dementia. I have qualms, however, about calling it "passive euthanasia." That's a fairly aggressive, if not contradictory, term that would seem to come from a perspective that starts with the presumption that we should do everything we can to keep someone alive as long as possible, which, as I understand it, is rooted in the contradictory Western Christian idea that we should not intervene where only God is supposed to decide. It's obviously quite contradictory since we intervene all the time by way of medical procedures for problems of disease and injury. If it's only God's place to decide when we should die, why isn't it God's place to decide whether to keep us alive in the first place with regard to disease and injury? All this being said, I don't have a good term for its replacement. On the web, I did find one substitute: "passive care," although that doesn't quite get at it either since the use of pain-relieving drugs is not actually passive. Hm...
ReplyDeleteThanks, as always, for your comments, Anton. I much appreciate you regularly reading and commenting on my blog posts as what you write always helps me, and other readers, think more deeply about the issues treated in the posts.
DeleteLet's think a bit more about euthanasia. The University of Missouri School of Medicine has a webpage titled "Euthanasia" (see the link below), and it begins with this standard definition:
"Euthanasia is the practice of ending the life of a patient to limit the patient’s suffering. The patient in question would typically be terminally ill or experiencing great pain and suffering.
"The word 'euthanasia' itself comes from the Greek words 'eu' (good) and 'thanatos' (death). The idea is that instead of condemning someone to a slow, painful, or undignified death, euthanasia would allow the patient to experience a relatively good death.'”
That same website also includes this explanation:
"Active euthanasia: killing a patient by active means, for example, injecting a patient with a lethal dose of a drug. Sometimes called 'aggressive' euthanasia.
"Passive euthanasia: intentionally letting a patient die by withholding artificial life support such as a ventilator or feeding tube."
It seems to me this is an apt term, and I think it is legitimate to expand it to include withholding medical treatment, except for pain relievers, for patients with severe dementia.
https://medicine.missouri.edu/centers-institutes-labs/health-ethics/faq/euthanasia#:~:text=Active%20euthanasia%3A%20killing%20a%20patient,a%20ventilator%20or%20feeding%20tube.
As I reread my initial comments, I think there is probably something fundamentally wrong with our dominant medical and theological problems with regard to this issue.
ReplyDeleteAnton, I would be interested in hearing, even briefly, about what you think is "fundamentally wrong" in this regard.
DeleteJust a guess, but maybe you are referring to the Hippocratic Oath to "first do no harm". https://en.wikipedia.org/wiki/Hippocratic_Oath#%22First_do_no_harm%22
DeleteWell, building from there, our current medical/ethical/theological system may have "gone off the rails". When measuring harm, do we only look at the individual patient, do we include family and friends, do we include society at large? "Death panels" may, after all, be a good idea. Is this what you're saying, Anton?
Phil, as I wrote to Craig Dempsey (see below) with regard to one of my previous posts about death control, I was considering writing some about "death panels" with regard to Alzheimer's/dementia patients, but I ended up not doing that. Maybe later (but probably not soon).
DeleteThank you, Leroy, for another blog in which you present a reasoned and caring approach to a difficult issue. I had forgotten that you were dealing your mother's dementia (d. 2008) at the same time I was dealing with my own mother's (2004-2011). It is a difficult row to hoe. But God's grace sustains us. You might be aware of Richard P. Olson's new book _Celebrating the Graying Church: Mutual Ministry Today, Legacies Tomorrow_ (Rowman & Littlefield, 2020). Dick is in a retirement community in Madison, WI, and I used to go out to have lunch with him monthly until COVID hit.
ReplyDeleteMy wife Joy manages her own eldercare service, so she is dealing more and more with these issues.
Thanks, Michael, for writing--and for this word about Dr. Olson, who I have known for several years and who is one of my Facebook friends--but we have had very limited communication, there or elsewhere. I missed seeing his FB post last November telling about the release of his new book, and I look forward to reading at least some of it at some point. -- I didn't realize he had gone to a retirement community in Madison after he left Central Seminary, and I was happy to hear that you had monthly contact with him in 2019.
DeleteLocal Thinking Friend Bruce Morgan's comments are usually brief, but they are always an encouragement to me and much appreciated. Here is the entirety of the email message he sent me before 7:00 this morning:
ReplyDelete"Thanks, Leroy, for your guidance on a delicate and tragic topic. I concur with your assessment and counsel."
I mean "paradigms," not "problems."
ReplyDeleteLeroy:
ReplyDeleteThanks for the continuing discussion of this relevant and tragic subject. It is becoming more personal with me. My wife is in the early stages of dementia and she is having a neuropsychological evaluation in the next few weeks. So far, this dementia consists of recent memory loss and disorientation. She is delusional and believes her deceased family members are alive and well. That's the short version. She is 87 and we have been married 65 years. She is still sweet and beautiful and we enjoy each other's company very much. I don't know what kind of care she is going to need in the future but I want to care for her and be with her all I can. However, she still suffers from trigiminal neurologia and back pain but pain medication does relieve some of the pain. I know I'm getting off the subject and perhaps this is too person to share with others, but it would be okay if you choose to do so. Our lives are built around pain management and not the best way to spend our twilight years. We trust in God but see no purpose in such a life of constant and unending suffering.
Truett Baker
Truett, I feel deep sadness for you as you and your wife have struggled in recent years with her physical pain--and now you have to deal with the tragedy of dementia. My father, whom you knew well, had to deal with the problems of the latter with my mother until the day he was hospitalized and then died four days later. But she didn't have any serious physical issues. In your case, you have to deal with both, and I know this is very stressful for you. I just pray you will have some enjoyable days, or even hours, amid all the pain. My heartfelt prayers are with you and your wife.
DeleteHere are comments received this morning from Thinking Friend Eric Dollard in Chicago:
ReplyDelete"Thanks, as always, Leroy, for your thoughts about Alzheimer's disease. It is a tragic and cruel disease, but I have hope that a cure will be found. Not only is it tragic for sufferers, but it is a tremendous burden for caregivers with whom the victims live if they are not placed in a nursing facility.
"We have a good friend, whose mother died from early-onset Alzheimer's in her 50's; she was in her 40's when she was first diagnosed. There is a strong genetic connection with early-onset Alzheimer's, so [this woman] and her husband elected not to have children. This is sad since they would have been terrific parents. [She] is now in her mid-60's with absolutely no signs of any dementia; she is as sharp as ever, so hopefully she has dodged the genetic Alzheimer's bullet."
And here are comments from Gayle June, a Thinking Friend who, like Eric, became a friend when he lived in Kansas City, but he now lives in St. Louis:
ReplyDelete"My friend Jack Phillips, a playwright, wrote a musical about this very thing. It was performed at the Fringe Festival in KC about 5 years ago.
It was a small low budget affair with about 5 amateur actors singing and acting the parts. It told the story of an aging science teacher who devised her own method of demise when she found she was diagnosed with Alzheimer's. It was a plastic bag with a helium tank attached. She planned to use it but needed help from her family when the time came. Most of the story is about the drama around the family members as you can imagine. Her husband, her sister, and several nieces and nephews all had different views on what to do. It examined ethics, morality, law, theology, pride and human feelings as each family struggled to convince their beloved matriarch to abandon her plans for a dignified death.
"It builds to a climax in the final act when she is alone with the nephew who is the most vehemently opposed to euthanasia is the one to see her lapse into a coma for the last time. Through an agonizing epiphany, he is the one who slips the helium bag over her head in a final heartbreaking act of love. It was very powerful and stays with me to this day...
"This is not an easy subject. My heart goes out to everyone who has been touched by this grief.
"Thanks for your post and contemplation on this matter, Leroy."
Thanks, Gayle, for sharing this. I would like to have seen that play. My wife has read about the use of helium, but I keep telling her that the use of such is illegal for those who would have to help the use of it. Recently we have heard about the "euthanasia underground," but, again, they engage in what is still illegal. While I would like for there to be some legal solution of having MAiD for those with severe Alzheimer's/dementia, that is not the case now in the U.S.--and I don't see that developing in the foreseeable future.
DeleteBecky tried to post the following, but it disappeared when she clicked "Publish." So here is what she tried to post about Gayle June's post:
DeleteI appreciate your thoughts inspiring such important discussions.
Gayle June’s comments about the Fringe show, “Taking Care of Mom,” touched me personally. I played the mother in that show. Both Jack, the playwright, and I were dealing with family members with dementia while we were preparing and presenting those shows, and our conversations were emotional and poignant. We both saw the value in quality of life rather than quantity of life. We talked about how others are affected by a decision to deliberately end life, but we agreed with the autonomy of the person who is actually suffering the indignity and deep loss of dementia.
My husband Craig has previously written more of the details about his mother’s increasing dementia. I spent the most time with her after she was placed in a nursing home, and I heard her say many times that she wanted to die. She knew she wasn’t the same person, and she didn’t see any benefit to staying alive. She realized there were things she used to be able to do that she couldn’t do any more. And there was nothing any of us could figure out to give her as a substitute purpose. If she could have found joy or peace in existing quietly, that would have been cause to reconsider my definition of life worth living. But she lived in anger and emotional pain for years.
Craig’s mother said that she didn’t want surgery in the elevator with her husband and me as we were taking her from one floor to another of the hospital in preparation for the surgery. So she was aware enough to know she was getting surgery and didn’t want it. But because the only medical person talking to Craig’s father was the surgeon, who had his own biases, Craig’s father couldn’t think past the surgeon’s description of “gory death” without surgery.
Why is it considered appropriate to use extreme measures to keep someone alive, but not appropriate to allow death to happen naturally? Or even, dare I ask, to use painless measures to give the release of death in situations like this?
Rebecca Dempsey
Rebecca, thank you so much for sharing this--and how interesting that you had a key role in the play Gayle wrote about! (And I am really sorry that you lost the first draft of what you wrote; I truly wish Blogspot.com could make it easier for people to post comments--and thank you, Craig, for helping get these valuable comments posted.)
DeleteI went to visit my Dear wife who had just gone into Hospice Care at het memory Care facility, like Any other day and she was in a Coma and we couldn`t wake her.
ReplyDeleteI stayed by her bedside the entire day and they brought in another bed because I wasn1t going to leave until my Dear wife woke up.
Well she Never woke up and after about a week, I released her to JESUS and she went to Heaven at 2:20 am on 2-20-2020.
It was Very difficult not seeing her before she went to Heaven, but she had Alzheimer`s for over 10 years and I had the privilege to take care of her most of that time.
Without JESUS in my Heart, I doubt that I could handle this and it`s Now been just over one year and I`m just Now getting to where I can talk about it without breaking down-Praise our Gracious and Wonderful LORD!
In Him,
John Tim Carr
John Tim, I thought about you and all you went through during the many years your dear wife Donna Sue had to suffer from Alzheimer's, and I appreciate you posting your comments about her passing here. (I knew it was February last year when she passed, but it is remarkable that it was at 2:20 on 2-20-2020.)
DeleteOur society has a long way to go before we are ready for a mature response to dementia. As I indicated in the last blog, I think an important goal for now is better education and counseling about hospice care. Perhaps a pre-hospice program to identify candidates and begin the conversation with family and friends, especially when an obvious pre-hospice patient is facing a major medical intervention. I will leave the exact parameters and structures to ethicists and doctors, but my mother's ordeal made clear to me that my family would have been better served by such a process.
ReplyDeleteCraig, thanks for your comments.
DeleteI am sorry that I didn't say anything about death panels in the article, which I originally thought I might.
Here are very valuable comments from Thinking Friend (and M.D.) Kevin Heifner in Arkansas:
ReplyDelete"First let me thank the other commenters for good insights, especially some of the more personal stories, and also your friend Mr. Jacobs. Good words all.
"Since I deal with these issues daily in my profession, I come at things from the perspective of a pragmatic ethicist. In a perfect world, these issues surrounding a 'good death' and the process of how we approach dying would be better codified legally. Practically, I have not found it difficult to achieve these same goals the majority of the time, which I think is the compassionate and medically reasonable position.
"One example. I used the term medically reasonable specifically. I use it in a legal (and I believe moral) fashion. Assume the patient is someone suffering of end stage Alzheimer’s or any other terminal condition. Legally, the bar is set extremely low, if you will, for a treating physician. All which is required of me is that I do what I consider medically reasonable (or you could substitute 'indicated' for 'reasonable'). Thank goodness this is my call, and I employ this rationale frequently. I survey the scenario, employ my medical brain with the help of ethics, religion, philosophy as I determine--and decide that which I think medically reasonable.
"Here is the opening for anyone wishing to point out possible fallacies with such an approach. They would be worthy to discuss. But from a practical matter, I have yet to see this simple approach abused or disused in 32 years of practicing medicine.
"Does this answer Dr. Seat’s dilemma of MAID for the Alzheimer’s patient. Practically, I suspect it does in the hands of a skilled practitioner. Key: the physician determines that which is medically reasonable. What we do need is better training for physicians so that more understand this simple concept.
"So many thoughts, and these issues can be complex. But shall close with at least how I practice and what I know works."
Thanks to Dr. Heifner for this practical and heartfelt approach. My observation with my own father was that specialization and hesitancy of collaborating with the primary care physician may lead to unfortunate decisions. The adage, if all you have is a hammer, every problem looks like a nail, may apply here. After my father died, after 3 months on dialysis, his primary care physician confided in us that my father was not a good candidate for dialysis -- his coronary heart disease made him too vulnerable for complications. I know my father wanted to end dialysis, but he gave in to family pressure for magical thinking. Also, his primary care physician did not object to the plan of care from the nephrology specialist. It might be that a hospitalist or a palliative care physician should have been consulted. This was 1990, so maybe there has been progress in these areas since then.
DeleteThose who are interested in this subject may be interested in listening to NPR's Fresh Air Interview with Katie Engelhart, author of the book titled, The Inevitable: Dispatches on the Right to Die. Journalist Katie Engelhart's new book, The Inevitable, follows people who are planning to end their lives due to terminal illness or unbearable disability — either legally with physician-assisted death, or as part of the "euthanasia underground," outside of the law. "Most people who choose to end their lives at a preplanned moment are more concerned with things like dignity ... autonomy," she says. "They're worried less about the physical pain than the loss of themselves."
ReplyDeleteThanks for posting this, Clif. As I mentioned in the adult class you led last Sunday, June and I both listened to the Fresh Air interview on Saturday and thought it was excellent and thought-provoking.
DeleteI just now read--and I wish I had read it earlier--"Coping with Dementia," pages 121~9 in Katy Butler's excellent 2019 book titled "The Art of Dying Well: A Practical Guide to a Good End of Life."
ReplyDeleteOne statement especially caught my attention, as it is in agreement with my conclusion to the blog post: "We must normalize saying 'no': depriving a demented person of a natural death may seem loving, but it is rarely kind" (p. 124).
On this past Sunday I received the following comments from local (new) Thinking Friend Linda Schroeder:
ReplyDelete"Thanks your for your end-of-life dissertations and concerns. I heartily agree with you about the need for and appropriateness of medical aid/assistance in dying, including for dementia patients.
"My father was one such example. In his case, we were blessed with the courageous official policy of the Catholic 'mercy' hospital he was in when his organ failures were declared irreversible and he was trapped in non-responsive dementia. My mom, my siblings, my husband and I agreed with the doctors that it was time to let him go and ordered the end of any further life-saving efforts. He lived for eight more days with only pain control medications as we sat with him and kept vigil with hymns and prayers and assurances of our love. One of his nurses, however, was so upset with our decision that she refused to continue on his care team.
"According to some medical researchers, the fact that now my two siblings (one older and one younger) also are dementia victims, does not guarantee but does increase the odds that I also will become demented. While still living life fully and joyfully, I also must be prepared for a difficult future.
"Therefore, my own personal Advance Directive for Health Care clearly specifies the conditions under which I would refuse any further medical treatment other than pain control if/when I myself no longer am able to communicate such wishes directly and credibly. Our sons and doctors have promised to honor my intentions. I hope and pray that they really will."
Thanks, Linda, for sharing your helpful comments. It sounds as if you have taken appropriate steps for dealing with dementia, if, God forbid, that you should become a victim of that dreaded disease. You have done what you can, it seems, to employ "passive euthanasia"--and as I wrote in the article, that is all that can be legally done at this point. But, if properly implemented, that probably enough.
Delete