I’m truly surprised by that, as in my (admittedly limited) experience that’s not the case. For one thing, your MIL must have received absolutely impeccable care. She also must have been hella healthy outside the stroke. Maybe it’s that most of the people I’ve known sick enough to be that bedridden also had other things going on that severely weakened them.
I do have concerns that a certain number of people who are paralyzed would be put to death against their wishes. I realize that the prospect of being paralyzed is horrifying to most of us but not everyone who is in that state wants to die - we had a poster here for a number of years who was locked-in post-stroke, here’s the Ask the Guy With Locked-in Syndrome thread
Of course, that would also require supplying much better support systems to people than we currently do, and, not knowing your MIL, I have no idea how much should would have benefited or not from more support. I suspect YOU could have used more help during that time because being a caregiver is no picnic.
Legal obligations are a big one. The entire system is, as has been noted, set to treat as a default. If an old lady is brought to the ER in cardiac arrest, even if she’s 103, paralyzed, and demented, absent a DNR or a health care proxy person they are legally obligated to attempt a resuscitation.
While we probably disagree on the details, I absolutely believe that we nee more more palliative/hospice care.
This is the entire crux of the matter, isn’t it? The moment someone is non-decisional, the death panel comes into existence, whether you want it to or not. With luck and foresight, there will be an easily interpreted legal document to govern the entire decline of the patient. If not, then the question of what is merciful is entirely up to the death panel, i.e. you. This sucks rocks, but so it goes.
I grant that the term ‘death panel’ is emotionally freighted. It was coined to be so. My conservative father in law used to like to complain about faceless bureaucrats and death panels until his daughter, who is an internist, suggested to him that this death panel is sitting around the dinner table with him.
So regarding mercy, I would argue that it is not merciful to ‘get the pillow’ should mom or dad begin to have trouble finding the remote. However, it might be merciful to contact hospice instead of an ambulance when a non-communicative 90 year old person contracts pneumonia. It is the death panel that makes this decision and whether the inevitable outcome is merciful or not or even intended or not, is entirely up to to and on the members of the panel. Again, this sucks. It is our responsibility whether we wanted or not.
My point is the ‘death panel’ could be self appointed, by the sufferer in advance, with parameters laid out, and a professional to act on those wishes.
Lots of expensive end of life care happens because it’s a hard choice for any self appointed family member to make. The DNR order isn’t enough.
We should be able to appoint the three that must agree, pick our own parameters, and know it will be carried out professionally. No pillow, and very little uncertainty for the family as regards the sufferers direct wishes.
Imagine the comfort it would give those diagnosed with such an illness, to know they get to decide when it’s the end, knowing their families won’t have to make such choices in their name, or be bankrupted, or watch on in horror.
As long as there is equal provision for those who DON’T want the “professionals” to do a mercy-kill, who want to hang on to the bitter end, who want to keep trying for that cancer cure, or whatever.
I find the notion of killing people abhorent. I’m OK with not standing in the way of death, I do have a very big problem with hastening the end. This is, in part, because I don’t think we do enough for the sick, disabled, and dying that we could be doing to alleviate their suffering without outright killing them.
So, let me say I do respect your viewpoint that you’d rather die than linger but know that I have deep reservations about it on both an ethical and in-the-real-world level.
We’ve disagreed on these types of issues before. I’m fine with anyone pursuing whatever treatment they wish, so long as they are footing the bill. Once someone is old enough and/or sick enough, the only treatment they should be provided ought to be palliative (other than which they pay for themselves through private resources/insurance.) Sure, it reinforces the class distinctions, and is another reason it sucks to be poor. But everybody has to die sometime.
Tee hee! When I suggested the pillow to my kids, my engineer son observed that most pillows are insufficiently dense, such that enough air would still get through them. But, he said, no worries. He’ll take care of me! And he didn’t mean changing my diapers!
I have seen enough instances where “us”, meaning the patient or her next of kin, weren’t the problem - it was the doctors (see my example of hear no living will see no living will speak no living will), and it was the doctors because they were afraid of the lawyers. Sometimes doctors push back even when the consumer is clear and the “death panel” agrees.
Regardless of what you’ve discussed with your kids, when the time comes, as they watch your mind go, do you seriously think, in those dire circumstances any of them will be able to actively achieve what you’d wish? Because no matter how that conversation goes they are not going to risk their liberty, lawyer fees and their future with their families to ‘follow your wishes’, regarding pillows or ice floes, or whatever else you are imagining.
No, instead, fully KNOWING your wishes, they are STILL going to watch, quite possibly for years, as you grow more angry and confused, don’t know anyone and can only grunt. How doubly horrific is that?
If I get a diagnosis of Alzheimer’s I want more control over my end of life, while I have my wits. And I want it observed, when I’ve lost them.
It seems, to me, self evidently merciful, and could save the health care system a horde of money.
Since it would have to be a legal document, set up by the individual, I’m not sure how anyone could use it to off Gran, for misplacing the remote. Three, non inheriting persons must agree that the parameters, as set, have been met. The choice of drug has been named and a professional is licensed to follow through. It could be done at home, or in hospice, I should think.
I guess, I just don’t see why this would be so hard to provide for those who want it.
I’ve got a case like that right now. The patient definitely did NOT want heroic measures, and we have that opinion of his in writing, many places, proper documentation. But then he rapidly became incompetent, we had to turn to his POA for healthcare to get consent, and POA is having everything done. I hate it.
And it’s NOT the physicians, nurses, etc. pushing for treatment, or holding out false hope, either. They’ve been told his chances. But POA is opting for life above all else.
Yes I do. I know my wife and kids, and they know me. I would do the same for them. It is not impossible to devise a test to draw the line. Helping to obtain/administer sufficient substances for an overdose should not be insurmountable. Anything less (IMO) is a lack of love - not to mention basic human compassion and respect.
I agree with you, it should be readily available for someone to choose assisted suicide for oneself. But I have more faith in my closest family, than I do in the government or medical community.
Yes, well, I’m also one of those sorts that want universal health coverage for everyone in the nation, much like Canada or the UK, where cost issues for individuals and families won’t be such a factor.
I agree that at a certain point it makes no sense to throw more resources down a black hole, but I, and other people, have concerns that where that line is drawn is going to have more to do with the size of the wallet than actual medical criteria. At least under the present system.
Because there is a terrible, terrible fear among some people that it will be abused, that people will be put to death against their wishes, or pressured to take that route, or, again, decisions will be made based on wealth and not actual medical condition.
Of course this is the situation at times. Keep in mind that my experience amounts to hearsay as I get my information from my internist wife. I’m told that there are and will always be a cadre of doctors that are uncomfortable with death and will avoid discussions on that topic. Some are religious, some want no part of the family drama engendered by all the unresolved junk brought to the fore by impending death, and some, unfortunately, cannot be bothered because frankly, end of life discussions are hard and time consuming. Patients families love to find a convenient scapegoat for something that is not wanted.
But from what I gather, the main problem is the fact that most people don’t want to discuss death; their own or their loved one’s. My wife suggests that it gets really bad when the out of town son/daughter shows up without an inkling about how bad things have gotten. That is when you get the real recriminations.
My own personal experience supports this. When my father was diagnosed with stage four cancer, I was repeatedly shushed by otherwise caring persons who condemned any discussion that didn’t end with a miraculous cure.
The simple fact is that we have a culture that is not good at facing end of life issues. That some doctors push back doesn’t change this.
If “actively” means killing the patient, then the closest I come to having encountered that is a decision to just let 'em have as much morphine as they want without aiming for “minimal amount necessary” while suspending almost any other treatment, but if it means being able to avoid any active treatment other than traumatology and painkillers it’s something I’m very used to seeing.
It was what my mother’s mother wanted, it was what she got and it was the most frequent choice for the immense majority of families in her old folks’ home (about 60%, per the manager). The home was surprised that the whole family was in agreement from the start, but not at the choice. Same for her two sisters and several great-uncles, and for my paternal grandfather. With my other two grandparents the decision was the same but the actual death was sudden enough that the decision didn’t need to be enacted.
Ah, one of those people who confuse living with lasting.
We are discussing people who are beyond being able to express ‘what they want’, as their minds have now gone. So I’m not seeing how what you’re referring to actually applies.
One difficulty in understanding such situations is that those of us who foresee opting out of treatment “when there’s no hope” (which includes me) may actually be outnumbered by people who want everything possible done, when it comes down to decision-making. If demented they may not be able to express it coherently, so their families carry the day.
Docs are trained to perform healing interventions, and it goes against the grain to do nothing. In many instances it appears nuts, but it’s not commonly a matter of greed in my perception.
A couple of recent cases I was involved in: a man in his nineties with an incurable abdominal carcinoma who underwent a complex surgery with what I’m sure were attendant huge bills (the pathology bill alone is moderately impressive). No choice for me on that one, but what should I do with a new cancer diagnosis in an aged patient with multiple co-morbidities (i.e. respiratory and renal failure) - do I call up the oncologist for each case and suggest opting out of immunostains and molecular studies because the patient will croak before too long anyway?
How about the demented guy in his 70s who has a fall and breaks his hip? Skip the hemi-arthroplasty and let him die in bed, never to walk again (again, another case in which I was on the periphery)? Glad I didn’t have to make that decision.
*turns out the guy in his 90s was up and walking a couple days after his complex surgery. One tough old bird!
The patients I talked about were all beyond being able to express what they wanted; by the time the family’s opinions are solicited, it’s because the patient can’t be asked. My mother and aunt taking into account the wishes their mother had previously expressed, as did the families of so many others (including any patient who was in a coma after a stroke), does not equal the patients themselves being able to express their own desires and make their own decisions at the time those decisions need to be taken.
If people are so terrified of mentioning death and illness that the subject doesn’t even come up at funerals, that’s a different problem. Most people I know will talk about those things at the very least when discussing how their loved one who’s just been placed in a box spent his last days. I know the opinions on the subject of every one of my relatives beyond age 10.
It’s too bad we don’t have a pill which would give you a terminal illness after a year or so–like delayed onset cancer. I suppose you could huff asbestos or something. That way you could begin the final decline at a time of your own choosing and you wouldn’t be dependent on other people to make that decision later on.
It would be tough to have someone else kill you when you were incapacitated, even if that is your wishes. Both from a moral and emotional perspective, it would be hard for the facilitator. It would have to be someone totally objective. I wouldn’t want a friend or family member to have to live with that burden.
I did read an article about a woman who made this arrangement with her doctor and her loved ones and scripted the end of her life. Wish I could remember where I read it because this is exactly what I would want. I don’t think it was legal but they did it anyway.
Meanwhile, we move my MIL into an assisted living memory care facility this weekend. It’s hella expensive.
And down in FL my own mother is undergoing chemotherapy for lung cancer and the prognosis, even if the chemo works is that she does not have much time left. It is surprising to me how knowing that the end is coming sooner than later creates such a different perspective.
You might have read the article I came to this thread to talk about. It was in the NY Times Sunday magazine maybe 2,3 years ago. A woman was diagnosed with dementia, likely Alzheimer’s. She definitely did not want to hang on to the bitter end. (Neither would I, incidentally.) She made this clear to her daughter who was sympathetic. The trouble is that even in the states in which assisted suicide is legal, you have to be of sound mind to use it. They found a poison that seemed reasonable for the purpose and she got the daughter to promise to administer it when it seemed necessary. At some point it seemed to the daughter that her mother’s mind was going. My recollection is that the mother sort of agreed, insofar as she was capable of agreeing. The daughter then got the other family members together, mixed the poison, the mother took it and expired. The daughter might be technically guilty of murder.
The other story I wanted to mention was a man I knew well. He once told me that his entire family had perished in Poland after he escaped in 1939. He had appointed a surrogate, whom I also knew fairly well. He had made his wishes clear that he wanted no extraordinary measures taken. He had a stroke. It was fairly severe and he was left aphasic (he could answer yes/no questions and clearly had reasonable cognition, but could not otherwise talk. So he wanted to stay alive, but made it clear that there were to be no extraordinary measures. After about five years he had another very severe stroke and never regained consciousness. His surrogate told the hospital to pull the plug. Suddenly, out of the woodwork came a distant cousin who insisted that all measures be taken or he would sue the hospital. Cowed, the hospital kept alive him with tubes and god knows what for several years until he finally expired. Ghastly. The cousin was ultra-orthodox and all of use believed he had no relatives here.
So I guess the key is to have a POA-holder whom you can trust to do exactly what you asked. I know family members may say they will and then when the time comes not be able to pull the plug. So you need someone you can trust. How about a lawyer? It seems to me if you paid the lawyer to follow your wishes, it would be done. The catch there would be if the lawyer died first, so what can you do? A succession list?
