Of course. As does any media condition.
I have a DNR on file at my Kaiser facility here in the Sacramento area. I’m not sure I trust them to have a system that really will alert anybody to this fact though. I don’t want a tattoo as an alternative.
I worked in nursing homes for a few years when I was young and there is no way in hell I’d ever want to be a patient in one. Bed sores are just too awful. I keep hoping I’ll have the courage and good timing to take myself out before I am unable to. I’ll probably miss it by this much.
Medic Alert bracelets and necklaces are available.
The question is would it work.
Does the bracelet tell medical personnel where the “yellow paper” is on file? After reading this thread, I’m going to get our living wills out and review them. Dementia is a real fear of mine.
My mother had a non-hospital DNR, which she carried with her, everywhere she went, for probably her last ten years; during much of which she was living entirely on her own, and during most of that time she was quite capable of it. She also had one on file at every medical facility she used.
When she was taken to the nursing home, finally fully enough in dementia that somebody other than me was willing to recognize it, the first thing they did when I got there was to ask me whether I’d sign one for her for that facility; they appeared very relieved when I did so without argument. I once caught a glimpse of a book with a list of patients – almost all of them had “DNR” written next to the name. I never noticed any failure of care on the part of the staff there, though I do think there were a couple of misjudgements – but I think we were lucky in the place we were able to find.
I favor euthanasia. I do have fears that it could easily get out of hand. I believe if the laws were properly written up at the very beginning it could avoid a lot of problems later on. Me personally, when life stops being fun I want to check out. I might change my mind when that time comes, I may no longer be of sound mind to make that decision. I have trusted people around me that I would trust to make that decision based on directives they were given by me. Even if mistakes are happening a little more often than expected. Was anything really lost? I have a hard time assigning those decisions to a government but not all of us have people to assign that decision to.
This is a step in the right direction:
It’s very complicated. Both my grandmother and my mother had fairly serious dementia before they died. My grandmother lived in a memory care facility, put a bandaid in her hair because she thought it was ornamental, lost the ability to speak, and maybe recognized my mother, who visited her every week. She didn’t recognize the rest of her relatives. Young her would have been appalled.
But she didn’t have any major physical ailments, enjoyed some of the group activities (they arranged for the patients to do group exercises, draw with supervision, and other stuff to break up the day) and enjoyed her ice cream. I remember thinking that if she were a dog, no one would recommend putting her down. She lived about 4 years like that. And i think killing her would have been extremely morally suspicious.
My mother lived on her own until she broke a hip. The hip healed up just fine, but something about that stress (and probably the time she spent socially isolated in a rehab facility) really did a number on her cognition. We hired a caretaker to live with her.
While she was no longer able to care for herself, she recognized the three kids who regularly visited and called her, and some of her grandchildren, and most of her friends. She was miserable and frustrated by her inability to do stuff. She and her sister talked every day about how to kill themselves.
But when her chance at an easy death came, she turned it down. She developed a stomach bleed that didn’t hurt, and would have killed her in a matter of days. Her doctor convinced me to bring her to the hospital for diagnosis. I was reluctant, but he was insistent, and said they could probably treat her. I expected to get a diagnosis and being her home to die peacefully, surrounded by loved ones.
But at the hospital, her doctor and my brother gave her a guilt trip about how upset she’d been when my father didn’t do everything he could have to stay alive. And ultimately they convinced her to get treated. I considered trying to talk her out of it, and i believe i could have. But my brothers (and perhaps my sister) would never have forgiven me.
The treatment was medically a complete success. She went home with clips on her stomach to stop the bleeding, and two units of someone else’s blood. And the next day she told me she hasn’t felt better in months.
Except…
When she woke up from the procedure, still at the hospital, she believed that they were still operating on her, and that she hasn’t been given anesthesia. She was terrified, in pain, and really abusive to the doctor, telling the women “you should have let me die”. They called me to come down to the closed-to-family part of the recovery area to calm her down. I also spent some time comforting the gastroenterologist.
And two days after the procedure, comfortable and at home, she also told me she shouldn’t have done it, and not to let them do that to her again.
A few months later she caught covid, and after antibody treatment didn’t work, my brothers reluctantly agreed with my decision to put her in home hospice care. FedEx misplaced her drugs, and she went more than a day in horrible pain. She was thirsty and unable to swallow. Due to complications, she was totally unable to move her limbs, and every time we moved her (to avoid bedsores) she cried out in pain and fear. She turned to me, unable to speak, and i believe she was begging me to put her out of her misery. As her healthcare proxy, i had promised to put her comfort above extending her life. I was not able to keep that promise.
But… She did have the choice, a couple months earlier. She knew that she no longer enjoyed life. She knew her prognosis was to continue to decline. She didn’t know how much the end would hurt. But she didn’t choose to die painlessly when God gave her that choice.
It’s hard. I wish we had more options for medically assisted death. But i don’t know how often they would help.
That part leaves me wondering whether it really was her choice to get treated; or whether she just didn’t have the strength to withstand their choice.
But you’re right that this isn’t a simple question. Except I would like to know that I will have a choice. And I wish my mother had had one; and that we’d been able to talk about it freely.
It’s hard to the point of nearly impossible. I hope that I have the means and the courage and the circumstances such that I can take control of my own situation.
Our choices are always influenced by the strong feelings of people we love and trust. Her son told her it was crazy not to be treated, and was obviously upset at the idea. Her doctor reminded her how upset she was at my dad when he died. She said she was ready to die. He said her children weren’t ready for her to die. Which was manifestly true. I told her that I would support her choice to leave against medical advice. I admitted that my siblings would hold it against me. I pointed out that it wouldn’t be her problem, however, if she made that choice.
She had moderate dementia, but this was something she still understood, and she engaged with. I think she did make the choice.
And this is the nub of the problem. The not-dying folks said, and believed, that their interests should override the interests of the dying person. So they avoided their fears for another couple months then got to experience them anyway. After having tortured their Mom for two months. And the doc, who has seen this play out over and over in other cases, took the coward’s way out, not educating the whole family on the grave reality of the situation.
We are all going to die. Everyone we know and love will die. Many before we do and a bunch after as well. The cowardice and fantasy the other sibs displayed over their own fears in the face of their mother’s difficult, brave, and realistic resignation to reality would be appalling if it wasn’t so extremely common.
If any of us hope to have influence over our own deaths, even if it’s just verbal influence, we need to start training our loved ones and future likely care-givers / care-deciders that they need to set their interests and fears wholly aside while deciding on my/our behalf. Our desires and concerns in extremis matter; theirs do not. Period. And we will extend them the same wisdom, maturity, and basic human decency if / when the roles are reversed.
It was very hard to tell my dying wife and soulmate that I agreed with her that further treatment was futile and that I would support both her decision and her comfort and dignity as she faded to dead. It certainly helped that when her whole mess started 20+ years earlier I’d told her that someday this day might come, and when it did, only her decision would matter; I would not have a vote.
I’m having a hard time seeing to type right now. Good evening all.
This thread is as important as they get. Thank you @puzzlegal and @LSLGuy and everyone else for sharing your stories.
I would probably never have been ready for my mother to die. I suspect that your mother’s children would never have been ready either.
I was afraid to tell my mother until the very end, when I didn’t know whether she could still hear me, that, although I wasn’t ready for her to go, I understood that she needed to go anyway and supported that. And then I had to find the words from out of a dream. I really hope she heard me. I’m afraid that she didn’t.
I thank all of you for being willing to talk about this now.
Here is a very tragic situation we have right now. We have a new resident. They were admitted because they attempted suicide. They attempted suicide because they didn’t want to live in their condition anymore. They are in chronic pain with open sores on their legs and wheelchair and bed bound. They are in their 80’s and don’t want to be here anymore. They were unsuccessful at their attempt to leave on their own terms so now they are going to be forced to live at a facility until they die of whatever eventually takes them.
I will be closely watching this Quebec bill and hope it moves its way all across Canada.
I’m pro physician-assisted suicide (PAS). I want that option for myself, my family members and any one I care about (i.e. society in general). It must, of course, be tightly regulated with checks and balances, an appropriate waiting period (which can vary depending on the condition), and the approval of the entire PAS team (in order of approval: the sufferer, the family members, the family physician and a clinical psychologist and/or psychiatrist).
Very few animals suffer to the extent many humans do when they have chronic debilitating disorders (physical or mental). Compassionate people euthanize their pets when they believe they are suffering. Very few wild animals die of old age or spend years enduring debilitating painful conditions—they’re killed and eaten by other wild animals before that occurs. Being eaten alive isn’t a great way to go, but it’s usually quick—certainly quicker and easier than living for years in severe, recalcitrant pain. Humans are the only animals that have to endure long-term suffering, when PAS isn’t an option.
Throughout my career in health care I’ve had first hand experience with extreme suffering endured by the worst cases in nursing homes and memory care facilities. Many of them, who are still cognizant, express an extreme desire to die soon and painlessly. They should be allowed to do so, as painlessly as possible, which PAS can provide.
Sure, you can argue that suicide is painful for the loved ones left behind, but: 1) the wishes of the suffering individual should trump the wishes of those left behind. 2) Physician-assisted suicide is significantly easier to endure by both the suffering individual and those left behind than suicide by one’s own hand (or, worse, homicide by some who want to end their loved ones suffering), and 3) the vast majority of people with severely suffering family members I’ve spoken to (a lot) are in favor of PAS, and wish it was an option for them.
Yes, those with certain mental disorders (end-stage dementia for one) who can no longer give consent present a more difficult decision process. But, those people suffer no less than others and should be given no less compassion. In those cases, you must rely on the rest of the PAS team to make the proper, compassionate choice—and, in virtually all cases, I believe they would do so. It’s not a perfect system, but, it’s the best we can hope for. It’s the compassionate thing to do.
I got very rambling. I realize not everyone wants to read all that I have to say so a lot of this post is spoilered and you can just jump to my statement at the end if you’d rather.
It all sounds very sane and logical, but then you get people like my father-in-law who, despite dying of bone cancer, would have been horrified at the prospect of someone killing him. Yes, his death was painful. He was told repeatedly that he’d have been pain control in an in patient setting but he refused, insisting on dying at home because he was that afraid of some doctor or nurse killing him out of some misplaced notion of mercy.
My late spouse spent quite a bit of time in his last months absolutely terrified that someone would murder him, thinking his life wasn’t worth living. This was not entirely unfounded: he’d lived his entire life as a disabled person with chronic pain, hearing people say things like “I’d die before I’d live like that” and “fetuses with X disorder (his) should be aborted” or “I kill myself before I’d live in chronic pain” (nevermind he had found ways to cope and very much wanted to continue living) and the like. There has been considerable research that on average medical personnel regard the quality of life of disabled people as significantly worse than the disabled people themselves do - perhaps in part because medical people are most likely to see such people on their worser days and not their better ones.
There are people who are members of groups that have been subjected to genocide within living memory. They are absolutely horrified at the notion of “compassionately” killing someone.
What protections are there for people who DO NOT want to be “helped” into death? What protections are there for people who state in advance they are completely and utterly opposed to killing people, even the ill or demented? I agree that the wishes of the person ill/injured/suffering/dying should take precedence, but how to we assure that such people are not being pressured by those around them?
Yes, yes, you’d mentioned protections but you speak about people being “put to sleep” like animals are put to sleep - but we kill off animals that are not just suffering at the end of life but are also inconvenient to our society. There very much have been instances of groups of people being slaughtered on an industrial scale because they were “inconvenient” to someone else.
I am also very, very concerned about the financial pressures that can be brought to bear. It’s a hell of a lot cheaper to kill someone than to pay for expensive, on-going care for years. Those mentally competent can protest that, but those that can’t…? Until all people are able to obtain the care they need without worrying about bankrupting their families that concern isn’t going to go away. There are definitely people who will kill other people, even close relatives, over money.
I worry about rubber-stamping, of someone assuming that because someone had a particular diagnosis they should be euthanized. Many disorders have a variable expression. My mother died with dementia, not because of it, and the level of dementia she had, while it did impact her, did not rob her of personality, or speech, or ability to express her opinions, wants, desires, or prevent her from enjoying the company of her friends and relatives. While I very much have sympathy for those around dementia patients who are completely debilitated and suffering immensely not every with the diagnosis are that devastated. Just like not everyone who is a quadriplegic or quadruple amputee wants to die - some do, some very much enjoy being alive and wish to continue in that state.
I have my medical directives and wishes in place. I’ve discussed end-of-life issues with the person who would be my medical proxy. And yet, I still worry about medical personnel attempting to override my wishes at the end of my life in circumstances where I can no longer speak for myself. Since my spouse died this has actually become worse - his last week of life I had to fend off doctors insisting on interventions my spouse (who was still mentally competent) was adamant he did not want, interventions that his personal physician agreed would be completely futile and would probably cause harm/suffering rather than any benefit. I was, on one occasion, confronted in a hallway, verbally scolded, told I was “giving up” on my spouse and when that didn’t work told I was killing my spouse. He was going on about how I had medical proxy and my spouse’s judgement could be questioned and I could give consent… Struck me as enormously unethical.
That’s a real problem. My spouse did not want those interventions. He wanted pain medication (which was provided) and me by his side (which also happened). Thank God MOST of the people in that hospital were truly compassionate and they gave him a peaceful and minimal pain death.
If someone states in advance when in a competent state that under certain circumstances they would want PAS I’d still be very uncomfortable with the concept BUT I would support their decision if it were legal in that place. The wishes of the person most affected being paramount. But for people who didn’t state their wishes in advance? Who are unable to consent? Wow. I find that really frightening.
So, while current programs for physician-assisted suicide seem to have adequate controls (indeed, a complaint I often see is that they are too restrictive) and I am glad for that my concerns aren’t going away.
This is why it’s important for the PAS order to take place, it must be a team decision, and the team must include those who know the patient best (family members and family physician). If the sufferer/patient is of sound mind, then their decision takes obvious priority, but still, the rest of the team must approve the decision for it to occur. If the team cannot reach a consensus, then it must go to 3rd -party mediation.
To reduce the instances of PAS decisions taking place for someone not of sound mind, nursing facilities, hospices, and long-term care facilities should have the PAS form presented as part of their application intake protocol (as they do with DNR orders) when the patient is more likely to be of sound mind. Of course, if PAS is legal, everyone should be encouraged to have their PAS choice on record even before entrance into a facility (perhaps as a check-off question when you renew your driving license, similar to organ donation). But, even then, it must be approved by the PAS team at the time of consideration.
If no PAS order is on record for someone not of sound mind and they are suffering, then it is hoped that the family physician and psychologist/psychiatrist on the team would be able to weed out possible family members who want PAS for nefarious reasons that are not in the best interest of the patient.
Again, it’s not a perfect system. It’s possible all the team members sign-off on PAS on someone who, when they were of sound mind, did not want PAS, but I believe, in practice, these occurrences would be minutely small.
Yes, it is horrible to think of cases of PAS taking place on unsound people who may not have wanted it when they were cognizant, but I think it’s more horrible to think of the many more cases of unsound suffers needing it and being denied, only because they can no longer give legal consent.
I can see consulting family members; but should they really be able to block it? Quite a lot of families may have one ‘everyone must be kept breathing at whatever cost’ member; or for that matter more than one.
And I can see requiring physician agreement; but the patient should have some choice of physicians, because again, there are doctors who will simply never agree.
@Broomstick – it’s not a simple question, and it can’t really be made one. There will be clear cases, and there will be blurry cases, and there’s no way to turn all the blurry cases into clear ones. It’s the nature of some types of medical care that one needs to turn oneself over to the mercy of strangers; and it’s the nature of humans that an occasional stranger won’t be merciful, or will have an unpleasant idea of what “merciful” is.
But I don’t think we can turn it into a simple question by saying nobody should ever be helped to die, either.
I am really sorry that you had to deal with a physician trying to override your spouse’s wishes in that fashion.
I am such a person. Opinions of such people vary on this specific issue. I don’t think allowing my mother to have chosen her own manner and time of death, or allowing me to do so, is remotely comparable to the Holocaust. Which was in any case not intended to be compassionate.
I wonder how much experience the anti-PAS folks have with family members suffering from terminal pain or dementia. My experience with my mother-in-law has 100% solidified my desire not ever to live as she does–without language, without the ability to leave her bed, without the ability to respond to other people. Her body is frail but not failing, and she could continue in this state for years. It’s as nightmarish as outcomes can be.