Well, if a primary family member goes against the consensus of the rest of the team, that’s when mediation may be necessary to rule on the final decision.
If the facility has a house physician who visits/treats residents regularly, they should be on the team since they best know the residents current medical history and state of mind. If the resident also has a family physician who knows the resident’s past medical history and state of mind, they should also be on the team. A psychologist/psychiatrist should be on the team because they can best deal with the effects of PAS on the resident and family members. Primary family members should be on the team because they are most affected by the loss and should (in most cases) best know the resident’s wishes.
What if the majority or all of the family members go against the consistently expressed wishes of the patient and also of their health care proxies, a position to which the patient did not name family members specifically because of this disagreement?
I would hope to hell that my explicit instructions to my health care proxies wouldn’t have to go to court, and quite possibly have to wait through a backlogged and lengthly court process while I was in agony of one sort or another. I went into hospital under the assumption that, if needed, they would work. I would have been even more scared than I was if I’d thought they’d only work if a judge or jury, none of whom I’d gotten to select, would have to decide the answer after an indeterminate and possibly considerably extended length of time.
And I had a quite low risk of complications drastic enough for the entire issue to come up, and family members who probably wouldn’t have tried to block the named proxies. People in other circumstances, if they can’t trust their proxies, might well choose to instead try to die earlier and nastier than they’d have felt otherwise necessary.
The whole point of having health care proxies is to let patients decide who they want to be on that team. They’re worthless if they don’t accomplish that.
How much should be spent on someone for how long? If you are able to pay for it, and that’s how you want your money spent/assets depleted, that’s fine. But if you are indigent, enjoy your pain killers on the hospital ward.
I think your comment about the dog is very insightful. And the fact the insight occurred to you naturally then, not later now, makes it very genuine. Thank you for that.
I have very little direct experience with dementia sufferers. But here’s a story for everyone to consider using the “what-if-a-dog?” rubric.
My grandfather was pretty physically and mentally vigorous up until about age 84. He gave up tennis at about age 80 because all his partners had died or become infirm. He still walked and rode public transportation in San Francisco where they had lived for decades.
One fateful day at age 84 he had a stroke at home. Left him a bit physically weaker & his balance a bit unsteady, but it really destroyed his mind. He could talk but often made little sense. He had vague notions of fuzzy memories of people, but he simply could not follow a simple conversation, or remember who he was talking to or about for more than maybe 30 seconds. Sometimes he could string two or three sentences together, but often it was more like “want coffee” “need bathroom” or “who you?”
His wife, herself in her late 70s tried to care for him at home, and at least at first his disposition was placid, if not much company. After IIRC ~6 months that began to change and he would by turns be awake but totally inert, placid and seemingly aware but aloof, or angry / verbally threatening. His already small verbal abilities continually dwindled.
At that point he was moved to a stroke / memory care facility where his wife could visit regularly but didn’t have care duty. At the facility he too did small activities overseen by the staff, fed himself, and when not inert seemed agreeable enough most of the time and distressed / angry only some of the time. Though now non-verbal except to shout when agitated.
Now the kicker: One day while he was in bed awake and placid and she was visiting, just yakking about stuff, he suddenly sat up purposefully, said in his pre-stroke strong voice “Oh <her name>, I’ve been in a terrible fog. It’s awful. Help me come back.” Then he lapsed into inertness. He died almost a year later, not having uttered a coherent sentence since that day, nor many in the previous couple months at the facility.
In all he lasted a bit shy of 3 years post-stroke. I am convinced in his case that post-stroke inside his head it wasn’t like being a dog. It was like being a man reduced to being a dog and knowing the difference. He knew, at least sometimes, how much of his mind was gone. He knew, at least sometimes, how the hours and days and weeks and months dragged out in his “fog.” And it caused him great psychological anguish.
We will never know for sure in his case, or countless others like him. We may someday be able to instrument the demented and the stroke- and brain-trauma patients to know who has insight into their condition and who does not.
But my personal prejudice, formed from my personal experiences, limited though they are, is that placidity or inertness on the outside need not correspond to placidity or inertness on the inside. We may be torturing a lot more innocent people than we know.
While I am sincerely glad that his passing was peaceful, that’s not the reality for many others. The things I’ve seen haunt me. It also seems that, as somebody approaches their end and it becomes more and more horrible, family tends to come less and less often, leaving the dying person alone in their confusion and pain. This can go on for years.
I’m not talking about the slightly confused elderly person who still enjoys going to the dinning room and sitting for activities even though they don’t really know why they’re there or what they’re supposed to be doing.
I’m talking about the person who’s anus is the bedsore. We can put medicated cream on it, but we can’t bandage it, obviously. And every day, multiple times a day, feces leaks out so we have to roll them, wipe it down as best as we can with them crying out in pain. Every two hours pushing pillows on the other side to offload the pressure. Month after month of them laying in pain, no visitors. Giving them as much pain meds as is prescribed. Their life consists of them sleeping or being awake to be spoonfed pureed food and cleaning their bottom in pain. That’s it. That’s their life. How incredibly cruel is it for us to force this existence on them. There’s no dignity and certainly no mercy in this.
I wonder how many people suffering from “terminal pain” could have benefited from truly modern pain management.
I’ve been at the bedside of several dying family members. I’m certain that there are people who, if they had had the exact same experience as myself, might nonetheless have arrived at different conclusions or viewpoint than I did.
In a better world the care you receive would not be determined by the amount in your bank account. Unfortunately, we live in a world where only the very wealthy are deemed worthy of long-term care. What does that say about our society?
If you wish to make your personal life-or-death decisions based solely on the financial state of your family well, it’s your life. But you should impose that sort of valuation on others.
And let me be clear - unless you have actual millions to spend you can quickly go from middle-class or upper-middle-class to indigent with a major illness, accident or significant collection of chronic problems. At least in America, people are a LOT closer to the edge than they usually realize.
I respectfully disagree. Many folk feel they deserve UNLIMITED care, and that SOMEONE ought to pay for it. I don’t see that attitude as scaleable or desirable.
Yes, but there are also many folk who feel they deserve SOME care and yet get NONE because they are poor, do not have insurance, or some combination of the above.
As we have seen in this thread there are many people who absolutely do not want “unlimited” care. They want care that will benefit them.
As for payment - we could do what so many other nations do: fund it through taxes that all pay, so that all may be covered. Instead, in the US, the consensus seems to be to funnel limited funds through third parties to siphon money off as private profits. Because… reasons…?
It is always interesting to me the vast gulf in attitudes about end-of-life scenarios between folks in the medical industry or folks who’ve experienced it up close with loved ones, versus the bulk of people who have no such experience.
One of the oddities of modern life at least in the US is that so many of us can get to be adults, or even elderly adults, with little or no direct experience of others’ decrepitude and death. Dunning-Kruger applies here too, as it does in all fields of human endeavor, and the folks who don’t know what they don’t know tend to make very bad decisions in this area.
The sad thing is how many bad decisions amount to one-way trapdoors where there’s no going back, or at least going back is very very hard. Both emotionally, legally, and practically.
IMO the neolithic morals of mainstream religions are actively harmful in this whole situation. Religious sensitivities drive secular law and the secular medical industry to create the trapdoor effect. So the harm is visited even on the enlightened. The only way to win the game is to out-maneuver it at the outset.
Thank you very much for doing the work that needs to be done. I’m not sure I could do it, and it must be very challenging on a day to day basis.
I’m 71, and live in a senior retirement community. Many of my neighbors are 80, 90 and older. Dementia is not often seen, but Alzheimer’s is, and I believe that dementia is the end game of Alzheimer’s. The trouble is, does the person w/ dementia even know if they are suffering to the degree that they are? Because it should be their choice whether or not to end their life or not, right?
I know this is not the same, but I really struggled when making the decision to euthanize our cat. To me, a life is a life, and Sissy’s life was just as important as anyone’s. She had been my best friend for 8 years, and her lymphoma treatments ended up costing over $38,000 and an eventual bankruptcy.
But it wasn’t the money, you can always get more money somewhere. Taking a life unnecessarily is a big deal, and Sissy could not tell us if she wanted that or not. All I knew was that the chemo drugs had stopped working, and the chances of the experimental ones working were very poor. So the wife and I decided it was the right thing to do. Earlier, we had to make the same decision w/ Sissy’s sister when she got a lung infection that couldn’t be stopped and left her gasping for air.
That was some years ago but it still bothers me. I am still not sure if it was the right thing to do for either of them. Each situation is going to be different, and I sure wouldn’t want to be in that position again. So I don’t know how one can make a judgement call for a person who also probably cannot say whether or not they are ready to die. But maybe someone has to at some point, just like we did. It stays with you though, and it should.
Alzheimer’s IS dementia. If you’re seeing Alzheimer’s you’re seeing dementia.
I think there is some misunderstanding about what dementia is an isn’t. It’s not a sudden, complete loss of function but a gradual loss that, depending on the person, may or may not progress to complete inability to do anything meaningful.
In early stages of dementia the person is still functional, still able to self-care, still able to communicate with others, often still able to handle their affairs if those things are not too complicated. As time goes on and the disease progresses the person becomes more and more disabled, this is true, but how fast this occurs and the exact mechanism varies considerably.
As I said, my mother died with dementia, not of it (she died of cardiovascular disease, to be precise). The coma she descended into was not a result of her dementia, it was a result of her heart no longer being able to supply her brain with sufficient oxygen to keep functioning. Prior to her heart weakening to that extent she was still aware of who she was, where she was, still recognized friends and relatives, could still enjoy a dinner out with dad, still follow simple plot line in movies, especially those already familiar to her, or speaking with people on the phone. This had been part of a slow decline over the last 5-10 years of her life, but although she had dementia (and some aphasia problems due to a stroke) her life was not a nightmare and very much something she herself wanted to continue. The concern I and some other people have is that some people, seeing the label “dementia”, will conclude that she is among the ranks of people totally bedridden, totally unable to communicate, totally disabled and decide to “dispose” of her. Or that it’s not worth the bother of getting her the supportive care needed for her to continue to live at home and enjoy her life.
That is very different that the person in a “long term care facility” parked in a wheelchair or bed all day, unable to fathom that they are sitting/lying in their own bodily waste and living a hellish existence.
Personally, I have to wonder if some of that horror could have been avoided in some cases. There is too much emphasis on heroic care: feeding tubes, CPR on elderly people in a terminal state, treatment of various things like pneumonia further extending a miserable state when it would be kinder to treat less and comfort more. Any suggestion that maybe we should not aggressively treat everything is met with cries of DEATH PANELS!!! - nevermind that private entities called “health insurance companies” make life-or-death decisions every day, often based more on money than whether or not such a thing is in the best interest of the patient.
As I’ve said, I can not condone or approve of deliberate killing of sick and/or elderly, but where it is legal I can’t stop others from making plans in advance to let their wishes be known. If you do decided you want to be killed rather than live with dementia that’s your choice, but consider the details. My mother’s life with dementia was not a nightmare and it might be too soon in the decline for you to want an end - you might want to define the point of your death as “when I can no longer care for myself” or “when I can no longer communicate” rather than my mother’s “when my ability to make sound decisions is impaired but I can still enjoy being alive”.
For @fordgt100’s benefit I’ll just add that Alzheimer’s is one disease that eventually results in the condition we call “dementia” = “significant loss of mind function”. But there are other non-Alzheimer’s causes of dementia. And some of those appear as different collections of symptoms in detail, although the big picture of “mentally not all there” up through “mentally completely absent” remains true.
As you so ably described, some folks with advancing dementia are still self-aware and enjoying their current (circumscribed) life, while others are not.
My late MIL did not have Alzheimer’s. But a series of TIAs, plus her mid 90s age, was slowly destroying her ability to form new memories, to remember specific words, and to maintain a train of thought long enough to solve a complex problem. Her heart attack stopped that decline in its tracks one night, but had her heart lasted another two years her mind doubtless would not have. Nevertheless, she was fully self-aware and enjoying her life just fine when the heart attack intervened.
Upthread I posted this. It’s speaks to yet another route to the condition of dementia. This one sudden-onset:
That’s a good point. And it’s certainly true that many people in various stages of dementia are comfortable and happy, or at least as comfortable and happy as necessary for them, personally, to want to keep going.
But if I can’t express my wishes while I’m still able to do so, with reasonable confidence that they’ll be carried out when I’m legally no longer capable of making decisions: then that’s a pretty strong incentive to rush things, and to try to manage in some fashion to accomplish my death while I still can, but when I might otherwise want to keep living for some time.
And if I have to do it by myself illegally: that’s likely to be harder both on me and on my loved ones, because I’m going to be much more limited in available methods and also in ability to discuss the issue freely and to have anyone there with me at the time.
I guess one of my concerns is that my mother did reach a point where she was no longer legally capable of making major/life-and-death decisions but she clearly was capable of having an opinion and expressing it.
Although I am (obviously) opposed to euthanasia I am open to an argument that it’s better to legalize it for those who choose it, regulate it, and have guardrails in place than the current situation that prevails in most places.
They are trying to bring some enlightenment to the often Dark Ages thinking on the topic of end of life, both due to mental and physical infirmity. They’re working on the problem for patients, for caregivers, for hospitals, and for governments / lawmakers.
They’re not the Ultimate Fount of Wisdom on this. But they’ve got a decent start on the project and one can do far worse than to read and consider their advice.
We’re all aware that some percentage of women who choose to have an abortion later regret it.
But I’ve never felt that to be a compelling argument for taking the choice away from others.
It’s barely a ‘choice’ when the issue at hand is void of potentially negative consequences. Most of us make choices rather frequently where harm could result.
I’ll go back to what I said earlier: places like Belgium and the Netherlands didn’t take a scattershot or capricious approach to this issue. They seem to have a thoughtful, systematic, and wise approach to this issue that will limit the likelihood of grievous error.
As one stuck squarely in the no-man’s land of “too sick to live, too well to die,” I might argue that any choice we make – where to place the pin on this particular continuum – will bring pain, heartache, regret, unintended consequences, and collateral damage. I see this as inevitable.
I think clear, specific wishes, written in a legally binding fashion, well in advance, basically has to be the underpinning of the issue.
And – moved by @LSLGuy contributions to this thread:
Imagine the people who believe such things and who are not ashamed to ignore, totally, all the patient findings of thinking minds through all the centuries since the Bible was written. And it is these ignorant people, the most uneducated, the most unimaginative, the most unthinking among us, who would make themselves the guides and leaders of us all; who would force their feeble and childish beliefs on us; who would invade our schools and libraries and homes. I personally resent it bitterly
–Isaac Asimov
I point that finger at nobody in particular, but … support the sentiment at its core.