Far too often, the “everything must be done” decision is made by someone who doesn’t know the whole story, and often hasn’t seen that person in years. Stopping treatment is NOT the same as active euthanasia, and it definitely isn’t mercy killing either.
If anything the opposite can be the case. Things like force-feeding through a tube in the end of days can actually cause more discomfort than it prevents.
Aldous Huxley rather famously went out into the eternal night on
which a decent dose. I’m not sure if I could do that.
Just a little nitpick - for some people the suicide of a loved one can be more painful than the natural death of a loved one. This does vary, of course, because people vary, but it’s not always the same level of pain. Does any of that justify keeping someone in agony? No, but those with dementia are not always in agony. Should someone be killed to ease the suffering of others? That’s what the fear is among those opposed to euthanasia. When one slides into the other is not a sharp line or an easy question to answer.
I get your argument, but that sort of drawn-out agony can also be due in part to a refusal in our society to accept that death happens to everyone in the end. Sure, we have cancer treatments (as an example), but fighting to the bitter end to win the “war” can result in a more horrific death than shifting from “cure” to “quality of life” when the illness is definitely terminal. Too often we prolong death. Too often the emphasis is on do something, do anything, rather than to step back and let nature run its course. If we could dial that back there would be less suffering.
Exactly. There are times that treatment is more for the benefit of the family than the patient. That’s not how it should be.
Agreed. And what you describe is exactly how we handled the late stage care of my now-deceased first wife. In accordance with her desires clearly expressed.
The death part is inevitable. A LOT of the suffering can be avoided by both the patient and the family being realistic about the over/under of various treatments and also being acutely aware of their own fears. And not letting family fear override the patient’s interests.
IMO most of the horror stories are perpetrated by people who’ve never thought a moment about this stuff before the situation becomes grave. Then they just mentally/ emotionally stick their fingers in their ears, go “LA LA LA I can’t hear you!”, and wish it would go away.
Hint: it won’t.
Depending on what meds you need, you might still take years to die.
Not everybody in dementia has other medical conditions requiring continuous medication, without which they’ll die rapidly. And uncontrolled diabetes, for instance, is a really unpleasant thing to die from, and definitely likely to cause trauma for the caregivers and family as well as the patient.
Yea, I wasn’t meaning those kind of drugs. I just think I’d rather stroke out unexpectedly one day, than decline with dementia. Lots of seniors take bp meds and live on restrictive diets.
Stop my bp meds, I’ll put on a little weight, enjoy some wine and a rich diet. Have a standing ‘no heroic measures’ document in place, when that stroke hits. They keep you comfortable while the fam can say goodbyes. Then let you wither, a day?, a week? It’s got to be better than 8 yrs of withering with dementia. In my opinion anyway.
If it fails to produce the desired effect, so what? You’re enjoying life, med free, eating and drinking without restriction. I’m not seeing a downside.
Ah. I do agree that people in assisted care and nursing homes, while they ought to be offered among other choices what’s thought to be a healthy diet for their condition, ought to be able to eat what they damn please. When somebody’s 25 and wants to take up mountain climbing, we don’t tell them it may shorten their life so they can’t. When somebody’s 50 and wants to go on repeated 600 calorie a day diets, nobody says they shouldn’t be allowed to do that. Why should somebody be forbidden to eat whole eggs with a glass of wine when they’re eighty, just because they needed to go into assisted care?
– we had an awful time finding a place for my mother which wouldn’t insist that she get up and eat breakfast at 7 or 8 in the morning. We did manage to find one – one place, within a 50 mile radius – which said she could eat lunch, supper, and a late-night snack. (They provided various snacks at pretty much any time anyway, that didn’t add an additional burden.) She hadn’t eaten breakfast by 8 in the morning for all of her adult life (coffee, sometimes, when she genuinely had to be up.) Why on earth should she have been suddenly forced to at 87?
But ‘eat what you want and don’t take the meds’ isn’t a way to avoid spending years dying with dementia, and quite possibly with a lot of other physical problems as well.
Every single time I’m feeding somebody pureed toast I think “give this poor person a damn milkshake!”.
Last year, my mother’s dog was diagnosed with cancer and there’s was nothing we could do about it. So she made the dog comfortable, spent a few weeks with it, and when the dog started spending more time in pain and had difficulty getting up I went to the vet with her and we put the dog down. Human beings should have the same opportunity for a dignified, swift, and relatively painless death.
I just saw this in the Celebrity Death Pool thread. I thought it might be a relevant point to share.
One of my concerns with the apparent eagerness to kill off dementia patients is that not all dementia is created equal. It’s not all Alzheimers. It’s not always aggressively progressive.
An example is my mother, who had vascular dementia which stems from a completely differently cause than Alzheimers. It also progresses differently. My mother did wind up with dad as her power of attorney, but for her it was more a matter of disinhibition, greatly diminished cognitive abilities, and a sort of general “fogginess”. She still recognized people, knew where she lived, engaged in self care (until the last few months, but that was due to extreme weakness from a failing heart, not her dementia), could carry on a coherent conversation, formed new memories (although she wrote a lot of notes because yes, also forgetful), and really was not that debilitated by her dementia. She never needed a “memory unit”. She died with dementia, not from dementia.
You don’t treat vascular dementia (VD) like you do Alzheimers. In some cases the progression of VD can be halted or greatly slowed by treating the underlying cardiovascular problems that often seems to trigger the disease. Can a person with VD wind up as badly off as someone with end-stage Alzheimers? Yes, it’s possible - but not inevitable in the same way it is for Alzheimers. VD doesn’t cause the sort of progressive weakening of the body that Alheimers does leading to a long slow decline with pneumonia a common cause of death, rather VD usually ends in an abrupt heart attack or stroke due to underlying cardiovascular disease.
Also, the problems with cognition and memory can differ significantly between the two, and in VD it can be “patchy” and variable depending on where in the brain damage occurs, so that the symptoms and progression can vary significantly from one patient to another.
But wait, you might say, Alzheimers is the most common form of dementia! A lot of elderly have it! Sure. And vascular dementia is the second most common form of dementia and a lot of elderly have it. (Even worse, it’s possible to have both at the same time!) The correct approach for one of these may or may not be the correct approach for the other.
If I get even 20% as bad as my grandma did, I would welcome being offed. It was horrifying and I don’t want to put myself or anyone else though it. It was just a complete waste of resources.
My mother had vascular dementia. People who only talked to her for a few minutes often thought she was just fine, and she did indeed still recognize people, and most of the time knew more or less where she was, though she didn’t always know why – that came and went.
She had no judgment left, of time, of distances between places, of what was and wasn’t reasonable behavior, of where anything was in relation to anything else. She could no longer read even short stories, or follow shows or movies of any length. She kept trying to get up and walk on her broken hip. She’d try to clean her own butt, and instead make a mess, and be horribly embarrassed about it. She was unable to live on her own, and would never be able to live on her own again, or to be able to make any significant judgments about her own life, except that she had had enough of it – and she was only able to make that one because I as her proxy, and the nursing home, respected her wishes about artificial nutrition and hydration. I have strong reason to think that she wanted to be able to make that decision before entering the nursing home; but the law and the culture prevented her from being able to do that, or even to talk about it clearly.
See posts above, also, on this.
I don’t think anybody in this thread is “eager[. ] to kill off dementia patients”. And I don’t think anybody in this thread is suggesting that everyone with any form or stage of dementia whatsoever should be euthanized, no matter what state they’re actually in – here’s your diagnosis, here’s your euthanasia appointment. Certainly I’m not suggesting that.
I’m discussing the possibility of people being able to make that choice for themselves; and I believe we’re all discussing the difficulty, both of what to do when people hadn’t expressed wishes while able to, and of what to do when people had done so but wanted to, or in practice did, put off actually doing anything about it until they’re no longer capable – either legally incapable, which is one thing, or in practice incapable of communicating, which may be another thing entirely.
People who are able to legally obtain euthanasia drugs often don’t use them right away, and sometimes don’t use them at all. People often want to be sure that they have the option, in case they decide that they need it. People who can’t get that option, or don’t expect to be able to, sometimes do things instead that are more distressing, both for themselves and for their loved ones.
I have very specific wording in my Advanced Directives.
Also, some people get DNR or DO NOT RESUSCITATE tattooed on their chests (a friend had this done and I discovered it’s way more common than I thought).
We need to come to an agreement on how doctors/caregivers respond in cases like this.
Yeah, my MIL had VD as well. Not the same as Alzheimer’s, but she was still a useless, high maintenance pain in the ass for her last several years. My favorite comment was when we were trying to talk her out of driving (when we still thought it worth trying to reason with her), we said, “What if you hit someone and kill them?” She responded, “Well, that’s just the risk the other people take!”
Basically an obstinate toddler who can buy her own smokes, and fire them up with the oxygen flowing! Lotta fun.
For the specifics of a DNR order (or tattoo) there’s a bit of a two-edged sword.
What I’d want is:
Your best effort care until / unless I have a heart attack. Then stand idly by while my brain dies in just a few minutes.
What many experts tell me I’d get is:
Your most indifferent care until that triggers a heart attack. Then stand idly by while my brain dies in just a few minutes.
We’d like to wish the latter doesn’t occur. But apparently it does. Once the patient says in effect “I don’t care if I die”, well, it’s kind of hard for the staff to care more about you than you do. There’s somebody down the hall who’s more demanding and they’ll spend their time satisfying them, not you.
Knowing what I do about post heart-attack survival scenarios I’ll probably be setting up a DNR pretty soon myself, despite being apparently solidly healthy in all respects except the calendar. But I admit to being nervous about the points I raise above, and that’s the whole and entire reason for my “probably”.
This.
We pamper annoying dogs and ignore the homeless, the elderly, and the crazy. We’re Doing It Wrong.
Yet my mother with multi-infarct (vascular) dementia did pretty well until she died. She had times where her memories were quite jumbled, and needed help with pretty much everything by the end, but for the most part had a good end of life. Fortunately her estate was able to pay for daytime companionship through a local agency, and a sibling’s nanny lived with her rent-free in exchange for keeping an eye on her at night.
From what I’ve seen vascular dementia’s effects are more variable than Alzheimer’s. It really does need to be evaluated on a case-by-case basis.