As a nursing home doctor, I deal with this topic almost every day (I do get a few days off 
). I’m familiar with the various nuances of all kinds of end stage disease processes. IMHO dementia is by far the worst. I’ve let the relevant people know what to do in the event I ever receive that diagnosis. And it’s not aggressive treatment / full code / full scope of management.
Having just spent a year watching my father seesaw back and forth between life and near-death a number of times, I cannot fathom how anyone could watch what he went through and NOT believe that assisted suicide should be a legal option for someone in his situation. He was unable to get out of bed or even raise his head unassisted for the last several months of it, was in home hospice, and was completely lucid for the vast majority of that time (when he was awake). Everyone, including him, knew he wasn’t going to get better. He had full-time aides who needed to help him do literally everything (plus at least one of his children there most of the time, although none of us were local).
Last October, Dad went into sepsis and was hours away from dying. He had literally signed a DNR the day before at the facility where he was at the time. My little brother, who had his healthcare power of attorney, overruled Dad’s previously expressed wishes and had him transferred to the ER…to get the same ^@%^@ IV antibiotics that he was already being given at the facility where he already was. It was a Catholic facility (mostly a hospice, but he was there for the wound care program, which is top-rated nationally) to heal the Stage 4 pressure ulcer that he acquired at Mount Sinai Hospital (I fucking never want to set foot in that place again). All the staff on the floor, including two chaplains, were completely aghast at what my brother did. Then the hospital where they transferred him decided they were overcrowded, COVID, etc. and wouldn’t let any of us in there to be with him for 2 days, until he was admitted and transferred to a floor. During those two days, the pressure ulcer, which had been healing nicely, opened up again, causing Dad intense and unrelenting pain.
Dad eventually recovered from the sepsis, was transferred back to the wound care facility, and when they decided that there was nothing left that they could do for him, to home hospice. He later told me that he wished he had gone home months earlier, and that my brother had overruled his previously expressed wishes in transferring him to the ER that night.
I am glad Dad got to say goodbye at home to some people who didn’t visit him at the hospital for various reasons, but at what cost? Would he do it over again, in hindsight? He died a week ago Sunday after a first slow, then precipitous decline, so I can’t ask him. But in his shoes, I’d like to think I would have realized what was going to happen and decided not to put myself and my loved ones through all that. The saddest part is that my brilliant father knew when he started to hallucinate, and that his mind wasn’t doing what he wanted it to do, which was very upsetting to him when he was lucid enough to realize what was going on.
My mother was upset that we couldn’t help her go at the end. Even though i had told her it’s illegal, she assumed that someone would do the compassionate thing.
My state recently legalized medical aid in dying under very strict conditions, which gave Mr. Legend a great deal of reassurance about what the future might hold. He has prostate cancer metastases throughout his bones, and while hormone blockers are keeping it in stasis for now, at some point it will start growing again. The likely end result of that will be a lot of pain before he dies, and it’s a great comfort to him that there’s an out, if he chooses it, when the time comes. It’s certainly not a call I would want to be able to make for him.
His brother had congestive heart failure and went into respiratory arrest at the hospital. Their dad requested that he be put on life support, and even after the doctor told us that there was almost no chance he’d recover, he couldn’t bring himself to make the decision to take him off the machines. Mercifully, he went into multi-organ failure and died without anyone having to make that call.
When my father-in-law was 91, he suffered a major stroke that left him unable to walk, speak intelligibly, or swallow. He had a very strong will to live, and none of his doctors seemed willing to level with him about the amount of improvement he was going to be able to achieve. Although he initially told us that he wanted to go into hospice at home, his romantic partner and her daughter talked him into getting a feeding tube placed and going into a rehab center. He then went into a (predictable and, indeed, predicted) cycle of hospitalizations for pneumonia and repeated stints in the rehab. He spent three weeks in pain, shuttling between facilities without us being able to visit without glass in between, before the last bout of pneumonia left him essentially comatose and we made the decision to put him in hospice care. We were finally able to spend his last days with him, but it’s anyone’s guess whether he knew it or not.
Me? After seeing the various ways end of life can go, I don’t feel confident about predicting the future. I can sit in my comfortable home with my adequate level of health and mobility and say I wouldn’t want to live in a facility with dementia, but I’ve known some people with dementia who seemed pretty content with life overall. I’ve certainly known a number of people who were physically disabled, some in ways that seem catastrophic to me, and still treasured their lives. If it were up to me, I’d go the way my mom and mother-in-law both did - a sudden cardiovascular event with no chance for treatment. If I can remain reasonably healthy until then, I’d like that to occur when I’m a little older than they were, say 89 instead of 79. And a hot fudge sundae with extra whipped cream while we’re at it.
My threshold is extremely low.
Heck, even if I’m perfectly healthy old person, if my 401 runs out and I have to live in squalor or government housing… Honestly, I’d rather be taken out humanely.
Let me die with dignity. I feel like I deserve that.
When I was in the psych hospital, I saw some very scary examples of seniors who’d long since gone around the bend.
Worst was a sundowning senior who thought her medications were killing her and that I came to her room every night to rape her.
That’s not a life I want for myself. Take me out before I reach that point.
My friend’s mother recently suffered a major stroke and couldn’t move. She refused food and water until she died. That was rough on my friend and her sibs, but at least their mother was able to make the decision herself, and convey it to her children and doctors.
Part of her care was washing her mouth from time to time, and my friend said her mom would clean her mouth shut when they approached her with the wet rag. “Just mouth care”, she had to reassure her mother, before the old lady would open her mouth and allow them to put the rag inside to clean and moisten her mouth.
I know this is a semi-rhetorical comment.
I know very few people who have witnessed or participated in such a thing as a family member or caregiver and continue to cling to the “Every second of existence is sacred” mindset.
The problem is the vast supply of Americans who have never had occasion to witness this. And who are able to maintain their eyes-screwed-shut belief that death or debility can’t happen to them or their loved ones. Until it does. And so they learn the hard way, by torturing Mom or themselves to death.
Of course the baleful contribution of organized Christianity has a lot to do with this. But many folks steeped in the “every breath is sacred” stuff come to their senses once they watch somebody really live out that ugly reality. Not all, but many.
Actually it wasn’t at all a semi-rhetorical comment. I can comprehend how someone might not want to make that choice for themselves or see a loved one make that choice, but I literally cannot fathom how anyone could believe that nobody, under any circumstances, should be allowed to make that choice.
Ah, gotcha.
IMO tthe only reason somebody could believe that nobody else should be allowed to is if they believe that some Higher Authority has so dictated. We know where that comes from.
I honestly don’t know the situation or situations where I’d definitely rather be dead than continue, but the ones that come most readily to mind have nothing to do with my own deterioration. They’re all social circumstances. Like being enslaved or otherwise subjected to extreme coercion.
The important thing is that yes, if I do ever decide such a thing, it is indeed my decision to make.
And wouldn’t there have been a way to get him home to say goodbye, without putting him through all the rest of that in the middle, if that had been an acceptable option all along?
I think my mother might have been trying, at one point, to arrange to manage to be able to do it herself; but didn’t feel able to explain this to anybody. When she was first going into dementia and nobody had recognized it yet, she fell and hurt her leg, and spent several months at my house recovering from that injury. She had me bring her medications from her apartment, and I collected what I could find; among them a whole lot of low-dose codeine pills, for which she had a prescription for pain (this was a medication she’d been taking on and off, as needed, for probably forty years, with no sign of addiction or or wanting or needing a larger dose.) I gave them to her, little by little, over the extended time during which she was recovering from the wound.
When I cleared out her apartment after her eventual death several years later in a nursing home, which she hadn’t wanted to go into, I found a little guidebook from one of the right-to-suicide organizations. One of the things it recommended was slowly stockpiling that particular medication until you’d built up enough for a lethal dose, to have on hand if and when you decided that you needed it.
I have additional reason to think that might have been what she was doing – not to mention that she had that book in the first place. But, if so, she either didn’t think she could tell me that; or, by the time I gave her the pills one by one for the purpose they’d been prescribed for, the early dementia was already interfering enough that she didn’t realize what was happening or why she should say something to me.
I really wish we’d been able to talk about it.
Yeah, it can vary a very great deal. Some people’s dementia seems to mostly take away their worries. Other people’s seem to massively exaggerate them. It’s possible to get anything from tranquility to terror.
That’s basically what my mother eventually did. I think she was probably also not hungry at that point, however. Your friend’s mother may not have been either.
My mother was no longer legally able to make the decision, though she was still able to express it (at least, until she went into coma as a result.) But this we had discussed, and I had no question about whether I should back her (I was her health care proxy, and I think the facility would have overridden her if I’d said to, and hooked up a feeding tube; they called me in to agree to their not doing so.) I was a bit worried that my BIL would make a fuss, but he didn’t.
In his particular case, his cancer wasn’t discovered until it was a 20-pound abdominal tumor almost entirely encasing a kidney and a chunk of liver. He had an extremely aggressive surgery, which was successful, but he was given the hospice option on initial diagnosis. He died cancer-free; it was the complications that broke down his body and eventually killed him. But all along, the surgeon was telling him that he would be home in a week, or worst case scenario, after a few weeks of rehab. It was 8 months before he came home! That was his initial choice, though.
Ah. That makes a lot of sense. And there are a lot of medical cases in which the doctors genuinely have good reason to think that the patient will be home in a week, or at least in the next week, or at least in the week after . . . but for some percentage of patients, it isn’t so.
I’m not sure that we could have gotten my mother into hospice before she went into coma, under current rules. She had dementia, but nowhere near bad enough to kill her anytime soon; and she had a broken hip that wasn’t healing, but they kept saying maybe it would start to heal, maybe it would start to heal. They wouldn’t have diagnosed her as specifically terminal in less than six months; she was only terminal Right Then because she wasn’t eating or drinking. Whether something additional was going wrong in her digestive system, we don’t know – there wasn’t any sense in doing further testing, probably invasive, in order to find out.
I can see myself living at home in old age with an aide coming in once in a while. But if it goes beyond that (e.g. nursing home) then it’s time for me to go. I will have had a good and long-enough life. Right now, I should have another 20 years left (or maybe more) so I don’t anticipate this happening anytime soon.
But something could happen and I could become debilitated at any time. On the other hand, if I slowly decline, I see inertia and physical/mental weakness being an obstacle to the process of ending it.
So in practice I don’t know how it would happen. If I’m not certified as being expected to die in 6 months then assisted suicide would not be an option. I can’t stockpile pills because they’d go out of date. I wouldn’t want to do anything painful or messy.
So inertia will probably win out in the end.
Naw, i didn’t tell the whole story, but she was totally paralyzed but also totally with it. They tried a feeding tube for a while until it was clear she wasn’t going to recover. Then she requested the tube be removed and refused to allow anyone to feed her. She didn’t want to live as an immobile lump.
A friend of ours did pull the plug on herself - legally, since we’re in California. She had a rare disease that was making her lose bodily function while not affecting her mind. If she had waited much longer she would have been trapped in a body that didn’t work at all. I can’t think of much more horrifying than that.
Assisted dying has been made legal here in New Zealand, although the criteria are quite strict.
Basically, neither age nor mental decline on its own are sufficient grounds for assisted death. If I was ever in the unfortunate position to meet the criteria, I’d very likely request it.
Indeed. From that site, among other factors:
The person must be considered competent throughout the assessment process and must also be competent at the time of the assisted death. This means if the person is found eligible for assisted dying but then loses competency, they cannot have an assisted death.
So being able to get it for dementia is absolutely ruled out, unless you’re willing to die before it’s had any significant effect on you.
And somebody who would otherwise be eligible due to intractable pain, but who’s also in the process of losing the ability to even understand why they’re in pain, must just keep suffering until something else kills them.
I understand why the people who write these things make them so strict. But IMO they make them so strict that they’re unusable by most of those who need them.
Most places that allow medical aid in dying include a time constraint, e.g. your doctor must certify that your life expectancy is six months or less. To my knowledge, dementia advances rather slowly, with the result that you wouldn’t even be deemed eligible for MAID in the first place, because by the time you have six months or less, your dementia will be so advanced that you probably won’t even be found competent to sign your request, never mind actually carrying it out.