She died well because she was willing to die too soon....
February 3, 2014 10:08 PM Subscribe
The Ultimate End of Life Plan. "...Torn, I called my mother's internist. 'I know your mother well enough, and I respect her,' he said. 'She doesn't want to risk a surgery that could leave her debilitated or bound for a nursing home. I think I would advise the same decision if it was my Mom.'
I called my mother and said, 'Are you sure? The surgeon said you could live to be 90.'
'I don't want to live to be 90,' she said.
'I'm going to miss you,' I said, weeping. 'You are not only my mother. You are my friend.'
That day I stopped pressuring my mother to live forever and began urging her doctors to do less rather than more. A generation of middle-aged sons and daughters are facing this dilemma, in an era when advanced medical technologies hold out the illusion that death can be perfectly controlled and timed."
Dying was transformed from a spiritual ordeal into a technological flail. .... Often there were no "last words" because the mouths of the dying were stopped with tubes and their minds sunk in chemical twilights to keep them from tearing out the lines that bound them to Earth.
Too often in our society, "quality of life" is sacrificed in favor of "quantity of life". I have to say I just don't get it.
posted by Greg_Ace at 10:31 PM on February 3, 2014 [9 favorites]
Too often in our society, "quality of life" is sacrificed in favor of "quantity of life". I have to say I just don't get it.
posted by Greg_Ace at 10:31 PM on February 3, 2014 [9 favorites]
It's about fear. My mother was terrified of dying, to such an extent that she wouldn't admit she was old or ill, and refused to plan for her declining years until it was too late to get ahead of the situation. I'm grateful she passed as easily as she did, but it was only after several years of dementia followed by a precipitous decline without any clear diagnosis. Even so, at least one physician wanted to perform brain surgery on her within a month of her death.
I'm terribly grateful we had an advanced directive to work with, and I cannot emphasize strongly enough how important it is to make these decisions and sign that paper before one begins to decline and medical decisions become more imperative.
posted by suelac at 10:41 PM on February 3, 2014 [5 favorites]
I'm terribly grateful we had an advanced directive to work with, and I cannot emphasize strongly enough how important it is to make these decisions and sign that paper before one begins to decline and medical decisions become more imperative.
posted by suelac at 10:41 PM on February 3, 2014 [5 favorites]
We're in a transitional period in medicine; good enough to stave off actual death for a long time, not good enough to recognize and manage the inevitable well. And while nice middle class folks get over treated, many others get under treated and actually do die too soon. It's not a simple thing.
I really hate, in these kinds of articles, where they talk about the costs, because it should really be about compassion, not blaming the dying and suffering for being so damn expensive.
posted by emjaybee at 10:42 PM on February 3, 2014 [16 favorites]
I really hate, in these kinds of articles, where they talk about the costs, because it should really be about compassion, not blaming the dying and suffering for being so damn expensive.
posted by emjaybee at 10:42 PM on February 3, 2014 [16 favorites]
from the WSJ article: "In California, my home state, a 2012 survey by Lake Research Partners and the Coalition for Compassionate Care of California found that 70% of state residents want to die at home, and national polls have registered even higher proportions. But in fact, nationally, less than a quarter of us do. Two-fifths die in hospitals, and a tragic one-fifth in intensive care, where deaths are often harrowing. This is an amazing disconnect in a society that prides itself on freedom of choice."
and
"This disconnect has ruinous economic costs. About a quarter of Medicare's $550 billion annual budget pays for medical treatment in the last year of life. Almost a third of Medicare patients have surgery in their last year of life, and nearly one in five in their last month of life. In their last year of life, one-third to one-half of Medicare patients spend time in an intensive care unit, where 10 days of futile flailing can cost as much as $323,000."
This issue will continue to rise to the surface as our society continues to age. The excepts above show that people want to be in a comfortable setting if they have the chance, and ideally as pain free as possible. America desperately needs to start addressing the disconnect illustrated by this article.
posted by Vibrissae at 10:45 PM on February 3, 2014 [2 favorites]
and
"This disconnect has ruinous economic costs. About a quarter of Medicare's $550 billion annual budget pays for medical treatment in the last year of life. Almost a third of Medicare patients have surgery in their last year of life, and nearly one in five in their last month of life. In their last year of life, one-third to one-half of Medicare patients spend time in an intensive care unit, where 10 days of futile flailing can cost as much as $323,000."
This issue will continue to rise to the surface as our society continues to age. The excepts above show that people want to be in a comfortable setting if they have the chance, and ideally as pain free as possible. America desperately needs to start addressing the disconnect illustrated by this article.
posted by Vibrissae at 10:45 PM on February 3, 2014 [2 favorites]
We all will have a death. I think a person can have a good death, and not just a failure of medical science. I'd be curious to know how common that belief is across America.
posted by benito.strauss at 10:58 PM on February 3, 2014 [2 favorites]
posted by benito.strauss at 10:58 PM on February 3, 2014 [2 favorites]
And while nice middle class folks get over treated, many others get under treated and actually do die too soon. It's not a simple thing.
Yeah, this is an important point. So often we talk about problems like this as if there was a one-size-fits-all solution — "Maybe things would go better for our patients if we treated them less aggressively," ignoring the fact that different patients have different needs.
It's like noticing that you're bad at math and saying "Maybe I'd do better if I just subtracted one from every answer," or noticing that you're a terrible driver and saying "Maybe I'd get in fewer crashes if I always veered a little to the left."
Most interesting problems can't be solved just by mindlessly introducing constant bias. You have to apply different tweaks in different situations.
posted by this is a thing at 11:02 PM on February 3, 2014 [14 favorites]
Yeah, this is an important point. So often we talk about problems like this as if there was a one-size-fits-all solution — "Maybe things would go better for our patients if we treated them less aggressively," ignoring the fact that different patients have different needs.
It's like noticing that you're bad at math and saying "Maybe I'd do better if I just subtracted one from every answer," or noticing that you're a terrible driver and saying "Maybe I'd get in fewer crashes if I always veered a little to the left."
Most interesting problems can't be solved just by mindlessly introducing constant bias. You have to apply different tweaks in different situations.
posted by this is a thing at 11:02 PM on February 3, 2014 [14 favorites]
Every second that ticks by is another second closer to the day that must never come, the day my Father passes away. It hangs over me like a buzzard circling in the sky. It's the thing that keeps me up at night, posting on MetaFilter rather than sleeping. I will have the strength and mercy to let him go if he is ill beyond medicine's ability to heal him, but I will be undone on that day. God forgive me, I dread it more than my own death.
posted by ob1quixote at 11:22 PM on February 3, 2014 [19 favorites]
posted by ob1quixote at 11:22 PM on February 3, 2014 [19 favorites]
I only want to live as long as my quality of life is acceptable to me. I do not want to have surgery or even be admitted to the hospital ever again. It concerns me that anyone might be able to override my wishes in this regard and I take as much precaution as I can to insure my wishes are followed. Surely this is my decision to make. I am sensible; I have checkups, follow doctors' recommendations, take my meds, etc., but I think I have a right not to be subjected to someone else's determination to stave off the inevitable, especially as those efforts will likely destroy my peace and happiness. Living longer is not important to me at all if I am not able to live well, by my own definition. I want to be able to think and to be relatively free of pain. That is important to me. I know that my son will be sad and will miss me but that is unavoidable in life if we are ever to love anyone at all. The love is more important than the loss.
posted by Anitanola at 11:38 PM on February 3, 2014 [42 favorites]
posted by Anitanola at 11:38 PM on February 3, 2014 [42 favorites]
This reads like a speech from every bar room bore from about 1975 onwards, complete with Indian chief quote about 'a good day to die' and lip-smacking descriptions of the (always) pointless 'flailing' and 'tubes coming out of you' stages of critical medical care. "Dying was transformed from a spiritual ordeal into a technological flail" has been a standard dinner party meme for decades, but I'm really not sure many people died in any 'spiritual' way before the 1950s.
Of course there's some truth in it, but I've heard so many younger people unconsciously diverting their own disgust and horror at old people's decaying bodies into a socially-sanctioned disgust at 'big medicine' and how it wants to 'keep us alive whatever' (insert reference to 'plugged into machines' here).
Someone is dying, and so the search for an enemy to suck up our anger kicks in, and since we've already said death is all kinds of Indian-chief cool, we can't get angry with that. So we start to lash out at the father figure-gone-evil of 'The Doctor.' Hence "Burning with anger, I told the astonished cardiologist..." etc. (It's also a nice touch when she says 'I got a call from yet another cardiologist...' Wow, that's a first world problem right there! I got too many fricking consultant cardiologists calling me up in person to discuss treatment plans for my next of kin!
It becomes natural that an old timer who says 'yeah, whatever, I'm done, I'll die now thanks' will emerge as a hero to all these people who seem suddenly very interested in how much standard western medical treatment costs (wonder it they think about it so much when they're having their snowboarding injuries fixed up?).
posted by colie at 12:11 AM on February 4, 2014 [18 favorites]
Of course there's some truth in it, but I've heard so many younger people unconsciously diverting their own disgust and horror at old people's decaying bodies into a socially-sanctioned disgust at 'big medicine' and how it wants to 'keep us alive whatever' (insert reference to 'plugged into machines' here).
Someone is dying, and so the search for an enemy to suck up our anger kicks in, and since we've already said death is all kinds of Indian-chief cool, we can't get angry with that. So we start to lash out at the father figure-gone-evil of 'The Doctor.' Hence "Burning with anger, I told the astonished cardiologist..." etc. (It's also a nice touch when she says 'I got a call from yet another cardiologist...' Wow, that's a first world problem right there! I got too many fricking consultant cardiologists calling me up in person to discuss treatment plans for my next of kin!
It becomes natural that an old timer who says 'yeah, whatever, I'm done, I'll die now thanks' will emerge as a hero to all these people who seem suddenly very interested in how much standard western medical treatment costs (wonder it they think about it so much when they're having their snowboarding injuries fixed up?).
posted by colie at 12:11 AM on February 4, 2014 [18 favorites]
My mother suffered and died from pancreatic cancer nearly 10 years ago. As far as cancers go it's devastating yet also merciful... both because it is generally fast moving and low on options.
At first the entire family including her went through that phase of scrambling and getting all kinds of hopes up, pursuing all the main stream and alternative options, grasping for straws, no matter how remote or unscientific. It's a progression from the practical pursuit of treatments to what really is a ritual instinctively performed by everybody involved which serves to gradually approach the realization of the inevitability of death.
Eventually my mother decided she was done and she'd try and live out her remaining time in dignity and without unnecessary struggle and suffering. We sold my parents' house (my dad already being in a home near my brother's because he needs full-time care due to a stroke) and moved her into a small apartment also near my brother's. She had a little bit of garden there (she always loved to garden) and seemed very peaceful and actually happy despite her condition. That lasted about 5 months until she became to weak and tired to take care of herself.
We then moved her into my brother's apartment so him and his wife could take turns taking care of her. I had been travelling from the US to Germany to see her as much as I could but when it became clear that things were coming to an end I was very lucky that my workplace here made it possible for me to take off as much time as I needed which ended up being over a month. (I can't ever thank that person enough that let me do this while continuing make sure I was getting paid as if I was working... I would not have been able to handle this financially otherwise.) Anyhow, my brother and I were very lucky since we were able to be with our mother until she finally died.
Being able to be there with her until the end made all the difference. Death became the natural thing it is and always has been and all fear of it went away. Of course we wished my mother could stay alive and of course she would have wished for a longer life herself but that wasn't an option and prolonging her life by force would have meant nothing but a few more month of sheer misery at best. And so it ended up being what I can never explain to anybody else in my family who wasn't as lucky as my brother and I: the last months of my mother's life were a good time, a happy time, a mix of talking, reminiscing, confessionals, just being around each other quietly. And when I say it was a good and happy time I don't mean that we were all putting up a smile and pretended nothing was going on. There was lots of sadness and tears along the way as well... it's hard to explain. It all added up to a deep appreciation of each other and a gladness that this experience was possible.
When my mother eventually died my brother and I had a cathartic moment of extreme grief and for a moment it felt like the world had collapsed. But we came out of it quickly and we both found ourselves... content. There was a lot of sadness that lingered for a long time but it was melancholy rather than outright grief. A mourning of the inability to continue sharing things with her. But there was no need to heal because we were whole. My sister had a much, much harder time than we did and I'm convinced that this was because she wasn't able to be there like we were. Experiencing a loved one's death this way, walking the path together until the end... it was dignified for our mother and healthy for our minds. She went into death with her mind at peace having relieved herself of things that had weighed heavily on her before and dignified, without fear and tension, because she had been able to make her choice as she saw fit.
posted by Hairy Lobster at 12:38 AM on February 4, 2014 [54 favorites]
At first the entire family including her went through that phase of scrambling and getting all kinds of hopes up, pursuing all the main stream and alternative options, grasping for straws, no matter how remote or unscientific. It's a progression from the practical pursuit of treatments to what really is a ritual instinctively performed by everybody involved which serves to gradually approach the realization of the inevitability of death.
Eventually my mother decided she was done and she'd try and live out her remaining time in dignity and without unnecessary struggle and suffering. We sold my parents' house (my dad already being in a home near my brother's because he needs full-time care due to a stroke) and moved her into a small apartment also near my brother's. She had a little bit of garden there (she always loved to garden) and seemed very peaceful and actually happy despite her condition. That lasted about 5 months until she became to weak and tired to take care of herself.
We then moved her into my brother's apartment so him and his wife could take turns taking care of her. I had been travelling from the US to Germany to see her as much as I could but when it became clear that things were coming to an end I was very lucky that my workplace here made it possible for me to take off as much time as I needed which ended up being over a month. (I can't ever thank that person enough that let me do this while continuing make sure I was getting paid as if I was working... I would not have been able to handle this financially otherwise.) Anyhow, my brother and I were very lucky since we were able to be with our mother until she finally died.
Being able to be there with her until the end made all the difference. Death became the natural thing it is and always has been and all fear of it went away. Of course we wished my mother could stay alive and of course she would have wished for a longer life herself but that wasn't an option and prolonging her life by force would have meant nothing but a few more month of sheer misery at best. And so it ended up being what I can never explain to anybody else in my family who wasn't as lucky as my brother and I: the last months of my mother's life were a good time, a happy time, a mix of talking, reminiscing, confessionals, just being around each other quietly. And when I say it was a good and happy time I don't mean that we were all putting up a smile and pretended nothing was going on. There was lots of sadness and tears along the way as well... it's hard to explain. It all added up to a deep appreciation of each other and a gladness that this experience was possible.
When my mother eventually died my brother and I had a cathartic moment of extreme grief and for a moment it felt like the world had collapsed. But we came out of it quickly and we both found ourselves... content. There was a lot of sadness that lingered for a long time but it was melancholy rather than outright grief. A mourning of the inability to continue sharing things with her. But there was no need to heal because we were whole. My sister had a much, much harder time than we did and I'm convinced that this was because she wasn't able to be there like we were. Experiencing a loved one's death this way, walking the path together until the end... it was dignified for our mother and healthy for our minds. She went into death with her mind at peace having relieved herself of things that had weighed heavily on her before and dignified, without fear and tension, because she had been able to make her choice as she saw fit.
posted by Hairy Lobster at 12:38 AM on February 4, 2014 [54 favorites]
Death seems pretty terrible to me. It would be easy to start believing that it's not so bad, that it's a gentle escape or like going to sleep (instead of being like slamming hard into a terminal brick wall, which is more or less what I actually suppose, YMMV and all that); but confronted by the reality I think in my mind that comforting vision would dissipate.
So one thing that would deter me from any kind of assisted or non-resisted death, especially my own, would be the expectation that right at the last moment, when it was already far too late to do anything, the dying person would suddenly think "Oh my God I've just made the worst mistake anyone ever made, Christ help me!"
posted by Segundus at 1:00 AM on February 4, 2014 [3 favorites]
So one thing that would deter me from any kind of assisted or non-resisted death, especially my own, would be the expectation that right at the last moment, when it was already far too late to do anything, the dying person would suddenly think "Oh my God I've just made the worst mistake anyone ever made, Christ help me!"
posted by Segundus at 1:00 AM on February 4, 2014 [3 favorites]
the dying person would suddenly think "Oh my God I've just made the worst mistake anyone ever made, Christ help me!"
It's an interesting point - not so long ago on here we discussed an article about people who survive suicide attempts (specifically bridge jumps), and the surprisingly large number of them who say they found themselves immediately regretting the decision as soon as they stepped off. (This doesn't mean 'I got my life together later and so now I'm glad I didn't die' - it means they reported thinking 'fuck, this was the wrong decision, another few days would have been great' when they were actually falling from the bridge.)
On the other hand there are those who have come near death and reported some calm feelings.
posted by colie at 2:12 AM on February 4, 2014 [4 favorites]
It's an interesting point - not so long ago on here we discussed an article about people who survive suicide attempts (specifically bridge jumps), and the surprisingly large number of them who say they found themselves immediately regretting the decision as soon as they stepped off. (This doesn't mean 'I got my life together later and so now I'm glad I didn't die' - it means they reported thinking 'fuck, this was the wrong decision, another few days would have been great' when they were actually falling from the bridge.)
On the other hand there are those who have come near death and reported some calm feelings.
posted by colie at 2:12 AM on February 4, 2014 [4 favorites]
Most interesting problems can't be solved just by mindlessly introducing constant bias. You have to apply different tweaks in different situations.
That's actually kind of the point. Right now, there's a mindless, constant bias towards performing every possible medical procedure, whether or not it'd actually be good for the patient, as long as it keeps them alive just that little bit longer. What we need is for patients--and the medical system--to recognize that sometimes this isn't the right thing to do.
posted by valkyryn at 2:19 AM on February 4, 2014 [8 favorites]
That's actually kind of the point. Right now, there's a mindless, constant bias towards performing every possible medical procedure, whether or not it'd actually be good for the patient, as long as it keeps them alive just that little bit longer. What we need is for patients--and the medical system--to recognize that sometimes this isn't the right thing to do.
posted by valkyryn at 2:19 AM on February 4, 2014 [8 favorites]
Death seems pretty terrible to me. It would be easy to start believing that it's not so bad, that it's a gentle escape or like going to sleep (instead of being like slamming hard into a terminal brick wall, which is more or less what I actually suppose, YMMV and all that); but confronted by the reality I think in my mind that comforting vision would dissipate.
I'm not at all invalidating your opinion, but tell me have you ever been in chronic pain? I mean for like, weeks or months? I have, and though I was a million miles away from wishing I was dead, it gave me great insight into my own feelings about suffering. That kind of pain is... well it was something else, that's for sure, and it changed me indelibly. But that's not really the point, the point is that when I was in that kind of pain I would done virtually anything to myself to make it go away. I still have a chuckle to myself when people are like " you could have become addicted to painkillers" - when I was in chronic pain, I'll tell you what I was addicted to: not being in pain. The idea of addiction in context of what I was feeling and facing was trivial, even comical.
And when painkillers, etc, fail - and they do and will - you might be surprised at how attractive release in the form of death can be.
My own grandmother, after she broke her hip, joined a long line of seniors (the statistical majority, in fact) who don't live beyond six months after breaking their hip. She stopped eating and drinking food long before she would have died otherwise. She knew she didn't want any more, and in some ways she was lucky. She only had two days of incoherent agony and transparent fear before her heart - built like a fucking toyota engine and powering on when everything else was broken - gave up.
Seeing her having to reduce herself to that, in lieu of the peaceful death she would have wanted, certainly cemented my feelings around the issue.
posted by smoke at 2:27 AM on February 4, 2014 [8 favorites]
I'm not at all invalidating your opinion, but tell me have you ever been in chronic pain? I mean for like, weeks or months? I have, and though I was a million miles away from wishing I was dead, it gave me great insight into my own feelings about suffering. That kind of pain is... well it was something else, that's for sure, and it changed me indelibly. But that's not really the point, the point is that when I was in that kind of pain I would done virtually anything to myself to make it go away. I still have a chuckle to myself when people are like " you could have become addicted to painkillers" - when I was in chronic pain, I'll tell you what I was addicted to: not being in pain. The idea of addiction in context of what I was feeling and facing was trivial, even comical.
And when painkillers, etc, fail - and they do and will - you might be surprised at how attractive release in the form of death can be.
My own grandmother, after she broke her hip, joined a long line of seniors (the statistical majority, in fact) who don't live beyond six months after breaking their hip. She stopped eating and drinking food long before she would have died otherwise. She knew she didn't want any more, and in some ways she was lucky. She only had two days of incoherent agony and transparent fear before her heart - built like a fucking toyota engine and powering on when everything else was broken - gave up.
Seeing her having to reduce herself to that, in lieu of the peaceful death she would have wanted, certainly cemented my feelings around the issue.
posted by smoke at 2:27 AM on February 4, 2014 [8 favorites]
As a nurse, that was a bit hard in some respects to read and I'm feeling conflicted at the end of it. I'm very supportive of patients wanting to decline care or procedures at the end of their life, but from a cardiac perspective the sort of interventions they were wanting to give this woman (coronary stents and - I think, reading between the lines - what's called a transcatheter aortic valve implantation) are both actually reasonably safe interventions and would probably have managed her chest pain and breathlessness and improved her quality of life. I wonder if that was communicated well to her by her physicians? I'm all for not doing medically futile things, or prolonging life to where quality has reached nil, but that's the point: as far as I can tell she had no major comorbidities, and in her last years she likely would have been able to continue doing the things she loved like gardening. If your last years are spent unable to do what you want is that really quality of life, whether that was brought about by intervening or declining interventions?
I would have made a different decision for myself, but that's the point: I'm coming from the reasonably privileged position of understanding first-hand how stents and TAVIs work, what the risks are, what recovery looks like, and so on. I know for example that generally valve replacements are pretty great things, because usually the patient has been symptomatic and breathless for ages and now they can suddenly mobilize and do all the activities they were prevented from doing before. Coronary care is my area of specialization, and I work in a tertiary hospital where all kinds of exciting cardiac things are being done, so I would be able to make really well-informed decisions about heart stuff for myself. Most people don't come from the same background that I do and so don't come from a privileged knowledge-base when making decisions about their care.
I'm aware that it's much more common for the story to go the other way: that all this pointless stuff was done that just made everyone miserable, wasted time and money, and made the end of someone's life unbearable and clinical when that's not what they wanted, or not what they would have chosen if they had been better apprized of the risks. But I feel as we quite rightly begin to enter into a dialogue about the very real fact that people are often being overtreated at the end of their life, there's sometimes this simplistic sort of math going on in the narrative where since more interventions and heroic efforts = bad, therefore the opposite must = good. Where the end of life for people through the medical system is much more complex than that: sometimes the things we do are not going to "cure" a patient per se, but they might provide better symptom management or other benefits. I also agree it's a bit eye-rolling to talk about costs in terms of dollars - there's always this artificial rationing going on with health-care dollars where "we don't have an endless amount of money to spend!" starts to feel laughable in the face of a country that, for example, gives obscene amounts of cash to the friggin military and always seems to find ways to absorb tax-loopholes exercised by the rich. I wonder how many nurses, doctors, physiotherapists, medications, and other important stuff that could pay for? But I digress.
Anyways, that's why it's so important that patients and families get fully informed consent about their care, so that they're armed with the information they need to make decisions, even if that decision is to do nothing, which in many cases would be appropriate. That's the ideal but it just doesn't happen a lot of the time in my experience, because we're busy in the hospital and it's easier for us sometimes just to say effectively "go do this" than it is to have a real discussion with people. I have witnessed doctors consenting patients for procedures who basically tell their patients "There's a risk of things like stroke if you have this, but there's a bigger risk to your heart if you don't." Is that informed consent? Really? This is something I feel really passionate about, because as our medical system becomes more and more heterogeneous, even we health professionals are becoming increasingly fragmented within our own knowledge domains, so how does a layperson expect to be able to digest all of this information and successfully navigate the hospital environment when even we are relying increasingly on super-specialists to advise us because the whole picture is too complex for just one clinician? And I think nurses especially have a role there as patient advocates to fill that gap, and a lot of the time we do, but as we get squeezed as a profession, with higher patient ratios and more acutely unwell patients with multiple comorbities requiring time-consuming and frankly often exhausting levels of care, we get stretched thin and we don't always get to advocate effectively because sometimes we're overwhelmed just trying to keep our heads above water and keep our patients safe.
Anyway I'm rambling. I just think we as health professionals can do a lot better, and I think the whole way we deal with end of life stuff needs to be overhauled. We're comparatively rad at this point at saving people, but I guess til we get comfortable with the idea of death as inevitable as a society we'll just keep dancing around it medically until the decision is taken from us when someone's body finally gives out.
posted by supercrayon at 2:48 AM on February 4, 2014 [37 favorites]
I would have made a different decision for myself, but that's the point: I'm coming from the reasonably privileged position of understanding first-hand how stents and TAVIs work, what the risks are, what recovery looks like, and so on. I know for example that generally valve replacements are pretty great things, because usually the patient has been symptomatic and breathless for ages and now they can suddenly mobilize and do all the activities they were prevented from doing before. Coronary care is my area of specialization, and I work in a tertiary hospital where all kinds of exciting cardiac things are being done, so I would be able to make really well-informed decisions about heart stuff for myself. Most people don't come from the same background that I do and so don't come from a privileged knowledge-base when making decisions about their care.
I'm aware that it's much more common for the story to go the other way: that all this pointless stuff was done that just made everyone miserable, wasted time and money, and made the end of someone's life unbearable and clinical when that's not what they wanted, or not what they would have chosen if they had been better apprized of the risks. But I feel as we quite rightly begin to enter into a dialogue about the very real fact that people are often being overtreated at the end of their life, there's sometimes this simplistic sort of math going on in the narrative where since more interventions and heroic efforts = bad, therefore the opposite must = good. Where the end of life for people through the medical system is much more complex than that: sometimes the things we do are not going to "cure" a patient per se, but they might provide better symptom management or other benefits. I also agree it's a bit eye-rolling to talk about costs in terms of dollars - there's always this artificial rationing going on with health-care dollars where "we don't have an endless amount of money to spend!" starts to feel laughable in the face of a country that, for example, gives obscene amounts of cash to the friggin military and always seems to find ways to absorb tax-loopholes exercised by the rich. I wonder how many nurses, doctors, physiotherapists, medications, and other important stuff that could pay for? But I digress.
Anyways, that's why it's so important that patients and families get fully informed consent about their care, so that they're armed with the information they need to make decisions, even if that decision is to do nothing, which in many cases would be appropriate. That's the ideal but it just doesn't happen a lot of the time in my experience, because we're busy in the hospital and it's easier for us sometimes just to say effectively "go do this" than it is to have a real discussion with people. I have witnessed doctors consenting patients for procedures who basically tell their patients "There's a risk of things like stroke if you have this, but there's a bigger risk to your heart if you don't." Is that informed consent? Really? This is something I feel really passionate about, because as our medical system becomes more and more heterogeneous, even we health professionals are becoming increasingly fragmented within our own knowledge domains, so how does a layperson expect to be able to digest all of this information and successfully navigate the hospital environment when even we are relying increasingly on super-specialists to advise us because the whole picture is too complex for just one clinician? And I think nurses especially have a role there as patient advocates to fill that gap, and a lot of the time we do, but as we get squeezed as a profession, with higher patient ratios and more acutely unwell patients with multiple comorbities requiring time-consuming and frankly often exhausting levels of care, we get stretched thin and we don't always get to advocate effectively because sometimes we're overwhelmed just trying to keep our heads above water and keep our patients safe.
Anyway I'm rambling. I just think we as health professionals can do a lot better, and I think the whole way we deal with end of life stuff needs to be overhauled. We're comparatively rad at this point at saving people, but I guess til we get comfortable with the idea of death as inevitable as a society we'll just keep dancing around it medically until the decision is taken from us when someone's body finally gives out.
posted by supercrayon at 2:48 AM on February 4, 2014 [37 favorites]
The fantastic episode of This American Life entitled "How to Rest in Peace" also contains stories of children dealing with the death of their parents; Act 2 is particularly relevant to this piece.
(Be aware that [in Act 1 only] there's detailed discussion of a murder, and also of a rape.)
posted by Quilford at 2:51 AM on February 4, 2014 [2 favorites]
(Be aware that [in Act 1 only] there's detailed discussion of a murder, and also of a rape.)
posted by Quilford at 2:51 AM on February 4, 2014 [2 favorites]
I should add on looking at my comment, my intention wasn't, "If only this lady knew as much as me she would have chosen differently!" so I hope no one takes it that way. According to the article she had watched her husband die so I don't want to portray her as someone who was without any kind of roadmap. It was more along the lines of the fact that I don't always feel confident about how well informed people are, and this article is just a springboard for those thoughts.
posted by supercrayon at 2:55 AM on February 4, 2014 [5 favorites]
posted by supercrayon at 2:55 AM on February 4, 2014 [5 favorites]
there's always this artificial rationing going on with health-care dollars
Without doubt - as soon as you accept even the tiniest, thinnest end of the wedge argument that says 'we have to make tough choices', then you may as well give up. The prices of the services and technologies that comprise health care are just as socially determined as everything else in the world. There are no 'tough choices' - just people being screwed by capitalism.
posted by colie at 3:01 AM on February 4, 2014 [2 favorites]
Without doubt - as soon as you accept even the tiniest, thinnest end of the wedge argument that says 'we have to make tough choices', then you may as well give up. The prices of the services and technologies that comprise health care are just as socially determined as everything else in the world. There are no 'tough choices' - just people being screwed by capitalism.
posted by colie at 3:01 AM on February 4, 2014 [2 favorites]
There are no 'tough choices' - just people being screwed by capitalism.
Oh, please.
posted by valkyryn at 3:04 AM on February 4, 2014 [6 favorites]
Oh, please.
posted by valkyryn at 3:04 AM on February 4, 2014 [6 favorites]
I watched my father slowly deteriorate and eventually die recently. He spent maybe 75% of the last 8 years of his life in hospital. It was a really hard thing for all of us to deal with. Aside from the illness he was experiencing, just the whole being unsure, having a family member basically living in hospital indefinitely is horrid. (No disrespect to hospital staff at all - they were incredibly good at making the best of a bad situation).
Having said that, if I was terminal, but I could be kept going for a while longer, with an endless morphine whistle... well, I'd be tempted. I like opiates (no, I've never taken heroin).
But there are some problems with that scenario:
- Being in hospital is still shitty in the end, no matter how much morphine you have.
- Family and friends, and hospital staff, feel obligated to visit and look after you, and it's not pleasant for them to watch you slowly die, even if you are doing it lying there stoned off your arse.
- Being in hospital costs a lot of money, either to yourself, or to the rest of the community, depending which country you're in and your insurance status.
- We quickly become tolerant to opiates.
I have a Do Not Resuscitate order in my recently lodged will.
posted by Diag at 3:30 AM on February 4, 2014 [1 favorite]
Having said that, if I was terminal, but I could be kept going for a while longer, with an endless morphine whistle... well, I'd be tempted. I like opiates (no, I've never taken heroin).
But there are some problems with that scenario:
- Being in hospital is still shitty in the end, no matter how much morphine you have.
- Family and friends, and hospital staff, feel obligated to visit and look after you, and it's not pleasant for them to watch you slowly die, even if you are doing it lying there stoned off your arse.
- Being in hospital costs a lot of money, either to yourself, or to the rest of the community, depending which country you're in and your insurance status.
- We quickly become tolerant to opiates.
I have a Do Not Resuscitate order in my recently lodged will.
posted by Diag at 3:30 AM on February 4, 2014 [1 favorite]
I have a Do Not Resuscitate order in my recently lodged will.
Depending on what we're talking about, that may or may not have any legal effect in your state. As a general rule, wills have no effect whatsoever until the testator dies. "Living wills," sometimes called "health care directives," are usually entirely separate documents.
Suffice it to say that most states have statutes which permit the creation of legally-effective documents regarding the direction of one's own medical care, but they're hard enough to enforce when they are completely legally accurate, so it's definitely worth checking to make sure you did it right.
posted by valkyryn at 3:37 AM on February 4, 2014 [5 favorites]
Depending on what we're talking about, that may or may not have any legal effect in your state. As a general rule, wills have no effect whatsoever until the testator dies. "Living wills," sometimes called "health care directives," are usually entirely separate documents.
Suffice it to say that most states have statutes which permit the creation of legally-effective documents regarding the direction of one's own medical care, but they're hard enough to enforce when they are completely legally accurate, so it's definitely worth checking to make sure you did it right.
posted by valkyryn at 3:37 AM on February 4, 2014 [5 favorites]
when I was in that kind of pain I would done virtually anything
Yes, I wouldn't say death could never be a reasonable choice, just that my fears would cause me to set the bar very high.
The other thing is that while death might be the bad thing you choose over something even worse, personally I can't see it as being a release exactly, or an escape. To be released you have to still exist afterwards. If you're dead the pain will stop, but so will you - you'll never feel better.
Just how it seems to me; views vary extremely, especially if you have any hope of an afterlife; and I really hope I'm not offending or distressing anyone.
posted by Segundus at 3:40 AM on February 4, 2014 [1 favorite]
Yes, I wouldn't say death could never be a reasonable choice, just that my fears would cause me to set the bar very high.
The other thing is that while death might be the bad thing you choose over something even worse, personally I can't see it as being a release exactly, or an escape. To be released you have to still exist afterwards. If you're dead the pain will stop, but so will you - you'll never feel better.
Just how it seems to me; views vary extremely, especially if you have any hope of an afterlife; and I really hope I'm not offending or distressing anyone.
posted by Segundus at 3:40 AM on February 4, 2014 [1 favorite]
The article seems to touch a bit more on risk management than dying per se - she avoid operations that would have improved her quality of life not because of an urge to die any quicker but to avoid the risk of complications. Now, the article doesn't quantify the risk and if I want to be generous I could assume the risks are low but it's an interesting point - trading off a 100% chance of some troubles and shorter life for 90% chance of less troubles and longer life and 10% chance of big troubles.
It's as much an economics experiment as a medical decision.
posted by GuyZero at 3:41 AM on February 4, 2014 [2 favorites]
It's as much an economics experiment as a medical decision.
posted by GuyZero at 3:41 AM on February 4, 2014 [2 favorites]
I think a person can have a good death, and not just a failure of medical science.
benito.strauss -- Amen.
posted by MonkeyToes at 4:33 AM on February 4, 2014
benito.strauss -- Amen.
posted by MonkeyToes at 4:33 AM on February 4, 2014
Some families would like to think "we did all we could," and that's fine. But everyone deserves that choice.
That reminds me of similar sentiments expressed in a poignant article titled "How Doctors Die" linked here some time ago.
posted by goodnewsfortheinsane at 5:15 AM on February 4, 2014 [2 favorites]
That reminds me of similar sentiments expressed in a poignant article titled "How Doctors Die" linked here some time ago.
posted by goodnewsfortheinsane at 5:15 AM on February 4, 2014 [2 favorites]
As someone with a terminal illness, which I discussed on another recent thread, I feel comfortable saying that I don't want to experiment with additional treatments or make my life miserable (in my case, I have exhausted all of the "normal" treatment methodologies). I'm lucky, right now, that I can do that and still feel pretty good despite my cancer. It won't last forever. But that is how I have chosen to live my life.
This piece isn't arguing that everyone should make decisions the same as those by Valerie Butler. It's showing that medical conclusions/advocacy that every possible chance of surgery/treatment should be tried aren't what many patients want to pursue. Quality of life does matter; it certainly matters even more for me after my diagnosis.
It's my decision. Each patient should be able to decide for him- or herself.
posted by miss tea at 5:28 AM on February 4, 2014 [17 favorites]
This piece isn't arguing that everyone should make decisions the same as those by Valerie Butler. It's showing that medical conclusions/advocacy that every possible chance of surgery/treatment should be tried aren't what many patients want to pursue. Quality of life does matter; it certainly matters even more for me after my diagnosis.
It's my decision. Each patient should be able to decide for him- or herself.
posted by miss tea at 5:28 AM on February 4, 2014 [17 favorites]
While I don't, in general, find the idea of "dying well" to be disagreeable (and even hope to be so lucky when my own time comes), it doesn't escape me that this encomium to refusing medical care and dying with one's boots on is published by the same media outlet that has relentlessly opposed any effort to try to provide medical care on a national scale.
posted by octobersurprise at 6:50 AM on February 4, 2014 [1 favorite]
posted by octobersurprise at 6:50 AM on February 4, 2014 [1 favorite]
This past summer I was visiting my family when my grandmother had an "event" (we think it may have been a stroke, but no official diagnosis was ever made) and we thought she was dying. My dad called an ambulance to take her to the hospital, but my grandfather wanted her to stay and die at home. In the end, they didn't really do anything for her at the hospital, and she also didn't die, and I feel like my dad and my grandpa were both right, and both carrying the weight of a terrible choice. I really wanted to protect my dad, because everything that was happening was hard enough for him without the addition of my grandpa's anger and grief. If she had died at home, would my dad have always wondered whether there might have been some help for her at the hospital? Not just delay or quantity of life, but real help? If it had really been a stroke, there are sometimes treatments that can really help quality of recovery if they are administered quickly. And if she had gone to the hospital and they had tormented her with painful procedures that ultimately did not help her, my dad would have had to live with that, too. It's a terrible responsibility. I am more afraid of that responsibility than of most things. On my last visit, I panicked when my grandpa wanted to run an errand and leave me alone in the apartment with my grandma. What if something happened to her, and I would be the person who needed to decide what to do? I begged him not to go, but he of course didn't realize why I wanted him to stay and went anyway. Everything was fine.
posted by prefpara at 7:07 AM on February 4, 2014 [1 favorite]
posted by prefpara at 7:07 AM on February 4, 2014 [1 favorite]
Her mother was in her 80s? Her mom made the right choice. Why live when the body is kicking out yet one organ is like new? If the heart starts to go and is repaired, the kidneys start to go, then what else? There's only so many surgeries the body can handle. There's only so much time to live a well and fully cognitive life. Plus, honestly, it is a cost issue. Long term illnesses such as heart disease require maintenance and repeated therapeutic modalities from pharma to doc visits. I just dealt with a year of chronic doc visits, ER visits, hospital stays with my father. My routine was every Wed it was a min of 3 doc visits---CHF clinic, cardiologist and rhythm doc interventions, and then the warfarin blood test. Mix in numerous ER visits and weekly hospital stays only to see him still decline. We couldn't control his periferal edema. We couldn't control his vascular dementia. We couldn't control the fact that he was starting to get wheelchair bound. We couldn't control that he required 24 hour assistance for the bathroom. We couldn't control his depression over my mom who passed a year prior, him seeing himself decline, him losing his dignity (he hated that I had to tie his shoes, help him dress and hold a portible urinal for him). As a daughter it scared me to see this is what happens when you get old. But I"m 42, with a 5 year old, married, with a stable job, a good home, and well..it was time. He was 80 with end stage CHF. He would have required a heart transplant in order for him to get back on his feet and even then no guarantee. WHY would I ever advocate for him to take up a heart at 80 when all he wanted to be with was my mom who died? That heart could have been for someone who had their entire life ahead of them. And so, we all agreed it was time for hospice with no intervention minus pain management.
We truly need to make the dying process one of peacefulness emotionally and physically. Sometimes, you're done and it's ok. It wasn't easy not to have my dad in the house seeing our 5 year old grow up. My son still cries for him. But this is how life goes. And you do your best from beginning to the end.
posted by stormpooper at 7:07 AM on February 4, 2014 [6 favorites]
We truly need to make the dying process one of peacefulness emotionally and physically. Sometimes, you're done and it's ok. It wasn't easy not to have my dad in the house seeing our 5 year old grow up. My son still cries for him. But this is how life goes. And you do your best from beginning to the end.
posted by stormpooper at 7:07 AM on February 4, 2014 [6 favorites]
My father-in-law has Alzheimer's. He will likely not die the "good death". He is already paranoid, delusional and angry. He threatens to divorce his lovely wife of 50 years nearly every day calling her frigid and a terrible match. He rants and rages about the same things on an hourly cycle. He does not remember that he has just threatened to divorce his wife when she makes him a sandwich and he says it is the best sandwich he has ever had and he loves her so much.
We are moving them to an assisted living 4 blocks from our home because the 120 mile drive is too much for us every time he kicks her out of the house, this 98 pound woman who has survived raising 3 sons and sailing to Cuba and aggressive breast cancer. He rages against her and we can only give her respite because she refuses to be apart from him.
We do not know what the next 10 years will bring. Will his body, which is still in exceptional shape, long outlive his fragile and tangled mind? We think so and truthfully, we hope not, because this is a progressive disease and it only goes one way.
posted by Sophie1 at 7:33 AM on February 4, 2014 [5 favorites]
We are moving them to an assisted living 4 blocks from our home because the 120 mile drive is too much for us every time he kicks her out of the house, this 98 pound woman who has survived raising 3 sons and sailing to Cuba and aggressive breast cancer. He rages against her and we can only give her respite because she refuses to be apart from him.
We do not know what the next 10 years will bring. Will his body, which is still in exceptional shape, long outlive his fragile and tangled mind? We think so and truthfully, we hope not, because this is a progressive disease and it only goes one way.
posted by Sophie1 at 7:33 AM on February 4, 2014 [5 favorites]
this encomium to refusing medical care and dying with one's boots on is published by the same media outlet that has relentlessly opposed any effort to try to provide medical care on a national scale.
Do you have any idea how many families could have 100% of their health care for a year paid for by the government for the same price of one Medicare patient spending a month in the ICU?
Because it's a lot.
That's kind of how most countries in Europe do what they do. Access to health care for routine stuff and non-life-threatening chronic conditions is pretty good. But the options available for end-stage terminal diseases are rather more restricted. It's a trade-off.
Providing universal access to health care is doable. Just not the same kind of health care that Americans are used to getting. Articles like this one are, I hope, part of what will eventually shift that cultural consciousness towards something more equitable and sustainable. I'd much rather see a dozen low-income families have regular access to urgent care clinics and primary care physicians than a single octogenarian spend an extra few weeks on life support.
posted by valkyryn at 7:51 AM on February 4, 2014 [6 favorites]
Do you have any idea how many families could have 100% of their health care for a year paid for by the government for the same price of one Medicare patient spending a month in the ICU?
Because it's a lot.
That's kind of how most countries in Europe do what they do. Access to health care for routine stuff and non-life-threatening chronic conditions is pretty good. But the options available for end-stage terminal diseases are rather more restricted. It's a trade-off.
Providing universal access to health care is doable. Just not the same kind of health care that Americans are used to getting. Articles like this one are, I hope, part of what will eventually shift that cultural consciousness towards something more equitable and sustainable. I'd much rather see a dozen low-income families have regular access to urgent care clinics and primary care physicians than a single octogenarian spend an extra few weeks on life support.
posted by valkyryn at 7:51 AM on February 4, 2014 [6 favorites]
Do you have any idea how many families could have 100% of their health care for a year paid for by the government for the same price of one Medicare patient spending a month in the ICU?
Oh, I don't disagree with you. Not at all. But I think that sort of thing is called a "death panel" in WSJ-land.
posted by octobersurprise at 7:57 AM on February 4, 2014 [2 favorites]
Oh, I don't disagree with you. Not at all. But I think that sort of thing is called a "death panel" in WSJ-land.
posted by octobersurprise at 7:57 AM on February 4, 2014 [2 favorites]
I think that sort of thing is called a "death panel" is WSJ-land.
You're taking benefits from one population segment and giving them to another. That was never going to be popular.
And given that the population segment that currently has benefits reliably votes in large numbers and the population segment(s) that don't currently have benefits have reliably horrible turnouts, there's your political problem.
Still, you're starting to see outlets like the WSJ start to recognize that the phenomenon described in the article is a problem. Certainly this is a good thing, yes?
posted by valkyryn at 8:00 AM on February 4, 2014 [2 favorites]
You're taking benefits from one population segment and giving them to another. That was never going to be popular.
And given that the population segment that currently has benefits reliably votes in large numbers and the population segment(s) that don't currently have benefits have reliably horrible turnouts, there's your political problem.
Still, you're starting to see outlets like the WSJ start to recognize that the phenomenon described in the article is a problem. Certainly this is a good thing, yes?
posted by valkyryn at 8:00 AM on February 4, 2014 [2 favorites]
We buried my dad last friday. He'd been ill with leukemia for a while and the chemo hadn't worked out and had been stopped. He was still receiving treatment of blood and platelets when required but kept getting various infections and would have to go into hospital to get a course of antibiotics and would have to stay for the duration.
He last went in on Dec 23rd and stayed in hospital until Jan 14th when he was allowed home. He told the family and his doctors that he wanted to go to his earthly home and then onto his heavenly home. He was 73. It would have been his birthday last thursday.
He was a devout christian and had no fear of death though he got emotional to be leaving my mum. But his doctors listened to him and allowed him to stop all treatment. Two days after getting out of hospital he got a chest infection and asked to recieve no treatment. One week later and he died from bronchial pneumonia in his own house with my mum, my sister and I with him.
I admire his bravery in choosing not to prolong things and I'm glad his death was as much on his own terms as he was able to dictate and that things weren't dragged on too long. I guess his faith was a help in his decisions. It's the only time I've glad he had his silly, foolish, beautiful faith and i miss him terribly.
posted by gnuhavenpier at 8:08 AM on February 4, 2014 [15 favorites]
He last went in on Dec 23rd and stayed in hospital until Jan 14th when he was allowed home. He told the family and his doctors that he wanted to go to his earthly home and then onto his heavenly home. He was 73. It would have been his birthday last thursday.
He was a devout christian and had no fear of death though he got emotional to be leaving my mum. But his doctors listened to him and allowed him to stop all treatment. Two days after getting out of hospital he got a chest infection and asked to recieve no treatment. One week later and he died from bronchial pneumonia in his own house with my mum, my sister and I with him.
I admire his bravery in choosing not to prolong things and I'm glad his death was as much on his own terms as he was able to dictate and that things weren't dragged on too long. I guess his faith was a help in his decisions. It's the only time I've glad he had his silly, foolish, beautiful faith and i miss him terribly.
posted by gnuhavenpier at 8:08 AM on February 4, 2014 [15 favorites]
Nice as this article is, I don't see how to solve the problem of providing aggressive care at end of life. Somebody smarter than me will have to tackle it. In a world with disconnected care, ineffective communication systems between health care professionals, our own inability to predict the future, and duty to provide care in emergent situations, we wind up with hospital deaths. Let me give you some examples of where it gets murky.
I have an advanced directive that was written with my will. I thought, like many think, that I should be allowed to die when the time comes.
Now, at age 35, I am inclined to tear it up. The advanced directives go step-by-step through various interventions, including feeding tubes, etc. Now I realize after a week at hospital myself and three weeks with my 40-something husband - we want and should have some of these interventions. I wanted my husband to have TPN while we waited for a surgery that would add years to his life and relieve his suffering. I want any chance possible for myself to go home after an accident - even if it means breathing tubes and CPR.
I suppose in the case of the relatively young it doesn't matter. First responders wouldn't read my advanced directive and would start the intervention on the scene. I forgot about my husband's directive and actually haven't dug it up to read what it says. Standing at his bedside, I wanted him to live and I wanted him to not starve while they figured out what to do. If we died at our age with this care, nobody would argue about costs. If the care was successful we'd have 40 more years.
So if you can't write a directive when you're young, when do you write it?
It gets more complicated in the case of the old. It's one thing when you have ambulatory patients of sound mind making decisions about their care, such as cancer patients, cardiac patients, etc. They can make informed decisions, get hospice, have a better death.
But I think back to my 92 year old roommate in hospital admitted with a broken hip after she fell in her home. She was found by her 20-something tenants. What exactly were those tenants supposed to do besides call 911? EMS has to provide care. Then when she gets to hospital, what are staff supposed to do? No family nearby, standard of care is to operate (for good reason), they operate. Surely some infection or pneumonia will take this lady's life soon. However I don't see how you keep her out of the hospital and out of the operating room.
Then there's the case of the nursing home. Both my grandmother and grandfather spent their last years in nursing homes, with alzheimer's and Parkinson disease respectively. We couldn't care for them at home. All the children had full time jobs and lived in houses with stairs, us grand kids were teenagers into early twenties and we went to school / university / college / work. Our homes couldn't be 24/7 care facilities for years on end. If we had assisted suicide, my grandfather was lucid enough early on to take that option. No such luck for my grandmother, she was long gone mentally before she could consent.
And so you're in a nursing home. How do you die? You fall, staff calls 911,we repeat the scenario of my hospital roommate. You get an acute infection, you are transported to hospital, you die in ICU.
Even if you have the right documents in place, and get your advanced directive, good luck getting those documents to follow you around from the nursing home, to ems, to the ER, to the hospital when perhaps somebody might call your physician after you've been admitted and after you've had all the care you don't don't want.
posted by crazycanuck at 8:26 AM on February 4, 2014 [2 favorites]
I have an advanced directive that was written with my will. I thought, like many think, that I should be allowed to die when the time comes.
Now, at age 35, I am inclined to tear it up. The advanced directives go step-by-step through various interventions, including feeding tubes, etc. Now I realize after a week at hospital myself and three weeks with my 40-something husband - we want and should have some of these interventions. I wanted my husband to have TPN while we waited for a surgery that would add years to his life and relieve his suffering. I want any chance possible for myself to go home after an accident - even if it means breathing tubes and CPR.
I suppose in the case of the relatively young it doesn't matter. First responders wouldn't read my advanced directive and would start the intervention on the scene. I forgot about my husband's directive and actually haven't dug it up to read what it says. Standing at his bedside, I wanted him to live and I wanted him to not starve while they figured out what to do. If we died at our age with this care, nobody would argue about costs. If the care was successful we'd have 40 more years.
So if you can't write a directive when you're young, when do you write it?
It gets more complicated in the case of the old. It's one thing when you have ambulatory patients of sound mind making decisions about their care, such as cancer patients, cardiac patients, etc. They can make informed decisions, get hospice, have a better death.
But I think back to my 92 year old roommate in hospital admitted with a broken hip after she fell in her home. She was found by her 20-something tenants. What exactly were those tenants supposed to do besides call 911? EMS has to provide care. Then when she gets to hospital, what are staff supposed to do? No family nearby, standard of care is to operate (for good reason), they operate. Surely some infection or pneumonia will take this lady's life soon. However I don't see how you keep her out of the hospital and out of the operating room.
Then there's the case of the nursing home. Both my grandmother and grandfather spent their last years in nursing homes, with alzheimer's and Parkinson disease respectively. We couldn't care for them at home. All the children had full time jobs and lived in houses with stairs, us grand kids were teenagers into early twenties and we went to school / university / college / work. Our homes couldn't be 24/7 care facilities for years on end. If we had assisted suicide, my grandfather was lucid enough early on to take that option. No such luck for my grandmother, she was long gone mentally before she could consent.
And so you're in a nursing home. How do you die? You fall, staff calls 911,we repeat the scenario of my hospital roommate. You get an acute infection, you are transported to hospital, you die in ICU.
Even if you have the right documents in place, and get your advanced directive, good luck getting those documents to follow you around from the nursing home, to ems, to the ER, to the hospital when perhaps somebody might call your physician after you've been admitted and after you've had all the care you don't don't want.
posted by crazycanuck at 8:26 AM on February 4, 2014 [2 favorites]
I just had this happen with my dad. But I was the one who made the decision to stop all of the treatments and stick to just palliative care. I could do this because he had his will, living will and health care proxy all taken care of years before. It wasn't easy, but I knew (because he had it written down) that I was doing what he wanted.
But the temptation was there. They would keep him alive if we just said so. It wouldn't have been much of a life, and it would have been done just so we didn't have to face his passing, but he would be alive.
It's only been a month and I alternate between feeling like I did the right thing and feeling like I could have, should have done something more. I don't know if I'll ever get over that.
If you have an older parent or relative who hasn't prepared for end-of-life, check out The Conversation Project, it's a way to get the ball rolling on a topic we'd all prefer to avoid as much as possible.
posted by tommasz at 8:34 AM on February 4, 2014 [1 favorite]
But the temptation was there. They would keep him alive if we just said so. It wouldn't have been much of a life, and it would have been done just so we didn't have to face his passing, but he would be alive.
It's only been a month and I alternate between feeling like I did the right thing and feeling like I could have, should have done something more. I don't know if I'll ever get over that.
If you have an older parent or relative who hasn't prepared for end-of-life, check out The Conversation Project, it's a way to get the ball rolling on a topic we'd all prefer to avoid as much as possible.
posted by tommasz at 8:34 AM on February 4, 2014 [1 favorite]
The primary cost is never, ever, in money. There are those who have to make terrible choices due to lack of coverage, and that's extremely sad and indicates a society with choices out of joint, and I get all that. But I've also had this experience:
I got hit by a car while riding a motorcycle and endured weeks of pain and suffering. It worked out, and I'm of right mind,* walking, etc. But I can tell you this: I would not have wanted to endure it just so that others could feel they'd done everything to prolong a life if all that life was going to be was suffering. It only reinforced my feeling that if I reach a stage where there's not credible hope, I won't be (by choice) enduring procedures just to get to suffer another week, month, or so.
Having started out trying to de-emphasize the money part of it, I will say that I would also hate to think that being tortured for another month or so for no good end would bankrupt my family and/or take resources away from another patient who did have hope for recovery. That doesn't seem to benefit anyone, and it's time we had an honest conversation about that without bringing politics into it.
*depending on who you ask
posted by randomkeystrike at 8:41 AM on February 4, 2014 [1 favorite]
I got hit by a car while riding a motorcycle and endured weeks of pain and suffering. It worked out, and I'm of right mind,* walking, etc. But I can tell you this: I would not have wanted to endure it just so that others could feel they'd done everything to prolong a life if all that life was going to be was suffering. It only reinforced my feeling that if I reach a stage where there's not credible hope, I won't be (by choice) enduring procedures just to get to suffer another week, month, or so.
Having started out trying to de-emphasize the money part of it, I will say that I would also hate to think that being tortured for another month or so for no good end would bankrupt my family and/or take resources away from another patient who did have hope for recovery. That doesn't seem to benefit anyone, and it's time we had an honest conversation about that without bringing politics into it.
*depending on who you ask
posted by randomkeystrike at 8:41 AM on February 4, 2014 [1 favorite]
My experience is a little different since my grandmother, at 95 and another 'Toyota truck' type of indestructible person, had a massive stroke but then (in my opinion) suffered further due to a lack of meaningful medical intervention.
Her higher brain was destroyed, but she was still conscious and sitting upright with her eyes open, looking around and grunting and grasping incoherently for two weeks before death. She was even in a ward with people eating grapes while recovering from minor strokes and the nurses just had to draw the curtains around her, because (it's not nice to say it, but it's true) a grunting zombie was ruining the atmosphere.
But the docs were unable to administer any kind of palliative drugs or treatment, and simply had to allow events to take their course (sips of water were allowed if you could hold the cup to the lips and fish out the bits of vomit from her mouth).
Anyway it's an impossible situation for many of us, but I think with these circumstances the caricature of invasive procedures and tubes all over the place and docs at least giving something a shot would have been preferable. The opposite of manic chest-pounding-CPR-riding-on-the-gurney-like-in-ER is not necessarily being allowed to slip away gently.
posted by colie at 9:03 AM on February 4, 2014
Her higher brain was destroyed, but she was still conscious and sitting upright with her eyes open, looking around and grunting and grasping incoherently for two weeks before death. She was even in a ward with people eating grapes while recovering from minor strokes and the nurses just had to draw the curtains around her, because (it's not nice to say it, but it's true) a grunting zombie was ruining the atmosphere.
But the docs were unable to administer any kind of palliative drugs or treatment, and simply had to allow events to take their course (sips of water were allowed if you could hold the cup to the lips and fish out the bits of vomit from her mouth).
Anyway it's an impossible situation for many of us, but I think with these circumstances the caricature of invasive procedures and tubes all over the place and docs at least giving something a shot would have been preferable. The opposite of manic chest-pounding-CPR-riding-on-the-gurney-like-in-ER is not necessarily being allowed to slip away gently.
posted by colie at 9:03 AM on February 4, 2014
My mother died while intubated, and only after she died did I realize that her final wish was for us to take the damn thing out. That was what the feeble hand-fluttering meant.
I will regret the fact that I realized this too late for the rest of my life.
posted by BrunoLatourFanclub at 10:32 AM on February 4, 2014 [2 favorites]
I will regret the fact that I realized this too late for the rest of my life.
posted by BrunoLatourFanclub at 10:32 AM on February 4, 2014 [2 favorites]
colie: "The opposite of manic chest-pounding-CPR-riding-on-the-gurney-like-in-ER is not necessarily being allowed to slip away gently."
This is true and I should amend the story I posted further up lest anybody thinks I was trying to present an idealized disneyfied version of the events. Just like in smoke's story about his grandmother's passing my mother's last 2 days were not easy to say the least. My brother and I were in charge of administering her morphine through a chest port she had and we did so whenever she asked for it based on the guidelines and instructions given by the nurses that would check in every so often. She didn't ask for additional doses too often... my mom was pretty tough and would not easily admit to being in pain ever. But during the last two days she no longer hesitated as much to ask for more which was a marked change and very atypical for her. During the last day her breathing became increasingly labored and she started to go through phases where she wasn't responsive. This increased until it was over. So, no, it wasn't easy, it wasn't pretty and I would never claim or suggest that her (or anybody elses) choice to forgo further attempts at treating her cancer somehow magically resulted in a gentle, painless death. That's not how it works. But her choice gained her a significant time of joy and being content as well as the ability to prepare for and accept her own death and to approach it with a peaceful mind and without fear.
posted by Hairy Lobster at 11:05 AM on February 4, 2014 [3 favorites]
This is true and I should amend the story I posted further up lest anybody thinks I was trying to present an idealized disneyfied version of the events. Just like in smoke's story about his grandmother's passing my mother's last 2 days were not easy to say the least. My brother and I were in charge of administering her morphine through a chest port she had and we did so whenever she asked for it based on the guidelines and instructions given by the nurses that would check in every so often. She didn't ask for additional doses too often... my mom was pretty tough and would not easily admit to being in pain ever. But during the last two days she no longer hesitated as much to ask for more which was a marked change and very atypical for her. During the last day her breathing became increasingly labored and she started to go through phases where she wasn't responsive. This increased until it was over. So, no, it wasn't easy, it wasn't pretty and I would never claim or suggest that her (or anybody elses) choice to forgo further attempts at treating her cancer somehow magically resulted in a gentle, painless death. That's not how it works. But her choice gained her a significant time of joy and being content as well as the ability to prepare for and accept her own death and to approach it with a peaceful mind and without fear.
posted by Hairy Lobster at 11:05 AM on February 4, 2014 [3 favorites]
Yeah, by "good death" I don't demand "slip away gently". When my Mom died our experience was amazingly similar to Hairy Lobster's. We had to administer her meds and move her every two hours to prevent bed sores and there was the horrible moment in the middle of the night when we tried to get three hours of sleep and the morphine wore off. Not at all pretty. But she was at home, not in a hospital. She was surrounded by her family, not unfamiliar hospital staff. She didn't want the ugly metallic hospital bed (they sent one to her, she sent it back), so we propped her up with pillows and covered her with soft blankets.
In that situation we could give her the death she wanted, and, unexpectedly, she gave us something back. By being able to "walk with her to the very end" we shared that experience, and it left us with a clean closure. I'm just repeating what Hairy Lobster said now, but I feel, in a way that's very hard to describe, lucky for having gone through it.
posted by benito.strauss at 11:31 AM on February 4, 2014 [4 favorites]
In that situation we could give her the death she wanted, and, unexpectedly, she gave us something back. By being able to "walk with her to the very end" we shared that experience, and it left us with a clean closure. I'm just repeating what Hairy Lobster said now, but I feel, in a way that's very hard to describe, lucky for having gone through it.
posted by benito.strauss at 11:31 AM on February 4, 2014 [4 favorites]
My experience is a little different since my grandmother, at 95 and another 'Toyota truck' type of indestructible person, had a massive stroke but then (in my opinion) suffered further due to a lack of meaningful medical intervention.
Thing is, it really does sound like there may not have been much to do in your grandmother's case. Palliative care significantly consists of things like cool washcloths, ice chips and spray bottles (helps you not feel thirsty), that sort of thing. That and just general hygiene assistance. As long as the nurses kept her reasonably clean and tried to keep her mouth moist, that may really have been all anyone could do for her. If that's the case, she probably died about as "cleanly" as one can under those circumstances. It's messy and excruciating to watch, but that's death for you.
As far as drugs go, if she wasn't actually in active pain, then there may not really have been any drugs which she could take. There are no drugs which mitigate the neurological symptoms of strokes. And doctors don't really like just sedating people just because they're hard to deal with unless there's a concrete reason for it. Disturbing the other patients isn't good enough; we're talking something like "tearing tubes and IVs out."
I'm sorry for you and for your grandmother, but it's possible that you may have seen about all the palliative care that exists.
posted by valkyryn at 11:45 AM on February 4, 2014 [4 favorites]
Thing is, it really does sound like there may not have been much to do in your grandmother's case. Palliative care significantly consists of things like cool washcloths, ice chips and spray bottles (helps you not feel thirsty), that sort of thing. That and just general hygiene assistance. As long as the nurses kept her reasonably clean and tried to keep her mouth moist, that may really have been all anyone could do for her. If that's the case, she probably died about as "cleanly" as one can under those circumstances. It's messy and excruciating to watch, but that's death for you.
As far as drugs go, if she wasn't actually in active pain, then there may not really have been any drugs which she could take. There are no drugs which mitigate the neurological symptoms of strokes. And doctors don't really like just sedating people just because they're hard to deal with unless there's a concrete reason for it. Disturbing the other patients isn't good enough; we're talking something like "tearing tubes and IVs out."
I'm sorry for you and for your grandmother, but it's possible that you may have seen about all the palliative care that exists.
posted by valkyryn at 11:45 AM on February 4, 2014 [4 favorites]
All of this massive expenditure at end-of-life has left me trying to think a bit about the perverse incentives going on.... and I have an idea. It's slightly strange, but here goes:
All billing for major procedures for patients with active terminal illnesses (NOT including Emergency care in an acute situation) is put into escrow for TBD weeks. If the patient dies during that time, the hospitals and doctors forfeit a percentage of the money. This would discourage doctors from trying to perform expensive treatments that they know or have reason to believe will not meaningfully extend the patient's life. Even if the forfeited percentage is small, it would recalibrate medical advice toward that which they really believe will have a meaningfully positive outcome.
All forfeited money could go to offset the hospice costs of people who elect not to undergo low-likelihood, "heroic" procedures.
posted by chimaera at 11:53 AM on February 4, 2014
All billing for major procedures for patients with active terminal illnesses (NOT including Emergency care in an acute situation) is put into escrow for TBD weeks. If the patient dies during that time, the hospitals and doctors forfeit a percentage of the money. This would discourage doctors from trying to perform expensive treatments that they know or have reason to believe will not meaningfully extend the patient's life. Even if the forfeited percentage is small, it would recalibrate medical advice toward that which they really believe will have a meaningfully positive outcome.
All forfeited money could go to offset the hospice costs of people who elect not to undergo low-likelihood, "heroic" procedures.
posted by chimaera at 11:53 AM on February 4, 2014
As some have mentioned , there us a concern that people who are not adequately informed - perhaps because of their own panic and need for control - may make hasty decisions and sticking to their guns... until it turns that cancer is painful and chokes you and by then it's too late. This happens.
My directive has pretty clear language about when enough is enough. However, I'm likely to outlive my husband and my family is full of religious right-wing people who would do anything to avoid Death Panels.
posted by Lesser Shrew at 12:13 PM on February 4, 2014
My directive has pretty clear language about when enough is enough. However, I'm likely to outlive my husband and my family is full of religious right-wing people who would do anything to avoid Death Panels.
posted by Lesser Shrew at 12:13 PM on February 4, 2014
patients with active terminal illnesses (NOT including Emergency care in an acute situation)
I'm afraid you've described a contradiction in terms. Almost anyone with an "active terminal illness" is likely to find themselves needing "emergency care in an acute situation." If you never reach the point of needing "emergency care in an acute situation," you wouldn't die.
The whole point of this problem is deciding which acute emergencies we're not going to treat.
Further, tying the provision of medical care to results is a really, really problematic idea. Same with lawyers. There is simply no guarantee that the most skilled doctor/lawyer (or professional of any stripe, for that matter) can achieve an optimal outcome. Everybody dies. It's not fair to punish doctors for trying to save people's lives. Sometimes treatments work. Sometimes they don't. Sometimes an obviously terminal patient can linger with a minimum of intervention for months on end. Sometimes someone who seems like they're about to make a full recovery can hemorrhage on the operating table during a routine procedure and bleed out in a manner of minutes.
Paying doctors for "results" is the technocrat's wet dream, but it's impossible to do in practice, as even the best doctor can't actually guarantee outcomes. Medicine is not auto repair.
posted by valkyryn at 12:24 PM on February 4, 2014 [4 favorites]
I'm afraid you've described a contradiction in terms. Almost anyone with an "active terminal illness" is likely to find themselves needing "emergency care in an acute situation." If you never reach the point of needing "emergency care in an acute situation," you wouldn't die.
The whole point of this problem is deciding which acute emergencies we're not going to treat.
Further, tying the provision of medical care to results is a really, really problematic idea. Same with lawyers. There is simply no guarantee that the most skilled doctor/lawyer (or professional of any stripe, for that matter) can achieve an optimal outcome. Everybody dies. It's not fair to punish doctors for trying to save people's lives. Sometimes treatments work. Sometimes they don't. Sometimes an obviously terminal patient can linger with a minimum of intervention for months on end. Sometimes someone who seems like they're about to make a full recovery can hemorrhage on the operating table during a routine procedure and bleed out in a manner of minutes.
Paying doctors for "results" is the technocrat's wet dream, but it's impossible to do in practice, as even the best doctor can't actually guarantee outcomes. Medicine is not auto repair.
posted by valkyryn at 12:24 PM on February 4, 2014 [4 favorites]
my family is full of religious right-wing people who would do anything to avoid Death Panels.
Actually, I think you'll find that a lot of "religious right-wing people" are entirely on board with what we're talking about here. A lot of them have health-care directives in place and actively do not want "heroic" measures to be used in their final illness.
What they don't want is someone other than themselves or their families making those decisions for them. It's an issue of choice more than it is of outcome.
This is a real problem. It's easier to get people to buy into the idea that they cannot pursue every available treatment option when they're not paying for any of it. But in the US, people have this idea--not entirely unjustified--that because they are paying for their health care benefits* there should not be any external restrictions on the treatments they choose. True, insurance chips in a lot, but they're contractually entitled to those benefits on the basis of premiums they've paid. Even Medicare operates on something vaguely like an insurance model, especially when combined with private supplemental policies. As it stands, an elderly person of even moderate means can choose to pursue extraordinarily expensive treatment options that are less available in other countries.
Getting the American population to move away from that sense of individual determination and contractual rights is going to be really, really difficult. Not only because we're used to it in practice, but because many Americans, on both sides of the political aisle, really don't like being told by the government that they can't make their own decisions. Even if they might actually make the same decision if left to their own devices, they want to have the freedom to make that decision on their own.
Damned if I know what to do about any of that, but there you go.
*And we are, more or less. Most Americans who aren't on Medicare have some form of private health insurance, mostly through employers. As those benefits represent a real and increasingly large portion of any given employee's compensation package, it's hard to argue against the intuition that as they're the ones paying the money, they should be the ones making the choices.
posted by valkyryn at 3:02 PM on February 4, 2014
Actually, I think you'll find that a lot of "religious right-wing people" are entirely on board with what we're talking about here. A lot of them have health-care directives in place and actively do not want "heroic" measures to be used in their final illness.
What they don't want is someone other than themselves or their families making those decisions for them. It's an issue of choice more than it is of outcome.
This is a real problem. It's easier to get people to buy into the idea that they cannot pursue every available treatment option when they're not paying for any of it. But in the US, people have this idea--not entirely unjustified--that because they are paying for their health care benefits* there should not be any external restrictions on the treatments they choose. True, insurance chips in a lot, but they're contractually entitled to those benefits on the basis of premiums they've paid. Even Medicare operates on something vaguely like an insurance model, especially when combined with private supplemental policies. As it stands, an elderly person of even moderate means can choose to pursue extraordinarily expensive treatment options that are less available in other countries.
Getting the American population to move away from that sense of individual determination and contractual rights is going to be really, really difficult. Not only because we're used to it in practice, but because many Americans, on both sides of the political aisle, really don't like being told by the government that they can't make their own decisions. Even if they might actually make the same decision if left to their own devices, they want to have the freedom to make that decision on their own.
Damned if I know what to do about any of that, but there you go.
*And we are, more or less. Most Americans who aren't on Medicare have some form of private health insurance, mostly through employers. As those benefits represent a real and increasingly large portion of any given employee's compensation package, it's hard to argue against the intuition that as they're the ones paying the money, they should be the ones making the choices.
posted by valkyryn at 3:02 PM on February 4, 2014
My mother is 60 and was in the cardiovascular ICU since a week before Christmas. She was intubated and, when they tried to remove the ventilator, needed to be reintubated after about 6 hours or so. So they were basically asking us (without ever directly asking it, which was really frustrating!) whether we wanted to pull the tube and let her die, or give her a tracheotomy to give her more time to wean from the ventilator in a safe manner.
In the end, we knew she wanted the tube out, and that she wouldn't want to be reintubated. But we also didn't think the tracheotomy was that extraordinary of a measure. These conversations with the doctors were always really painful. We felt that we had a good idea of what she would want, and how much discomfort she would find acceptable, but we had no idea what we were committing her to. The doctors were willing to answer our questions, but that's not enough! We didn't even know what to ask. I appreciate the doctors were being sensitive, but I would have appreciated it if they had been more direct and volunteered more information about the consequences of our choice, rather than us having to sleuth those details out of them.
And I know they were trying to be supportive, but I couldn't shake the feeling that they were encouraging us to let her go, and I wasn't comfortable with that.
In any case, she's out of the ICU and in a recovery center, though still on the ventilator. She's sitting up and learning to talk and walk again for the first time in a month. She has congestive right side heart failure, and I know that's a permanent condition. I'm just hoping we can give her a few more months in a more comfortable setting than that damned ICU (which of course I'm very grateful for).
posted by heathkit at 6:27 PM on February 4, 2014 [1 favorite]
In the end, we knew she wanted the tube out, and that she wouldn't want to be reintubated. But we also didn't think the tracheotomy was that extraordinary of a measure. These conversations with the doctors were always really painful. We felt that we had a good idea of what she would want, and how much discomfort she would find acceptable, but we had no idea what we were committing her to. The doctors were willing to answer our questions, but that's not enough! We didn't even know what to ask. I appreciate the doctors were being sensitive, but I would have appreciated it if they had been more direct and volunteered more information about the consequences of our choice, rather than us having to sleuth those details out of them.
And I know they were trying to be supportive, but I couldn't shake the feeling that they were encouraging us to let her go, and I wasn't comfortable with that.
In any case, she's out of the ICU and in a recovery center, though still on the ventilator. She's sitting up and learning to talk and walk again for the first time in a month. She has congestive right side heart failure, and I know that's a permanent condition. I'm just hoping we can give her a few more months in a more comfortable setting than that damned ICU (which of course I'm very grateful for).
posted by heathkit at 6:27 PM on February 4, 2014 [1 favorite]
And I worry about living wills. I usually associate the need for living wills with some condition that leaves you in a coma or braindead, and someone needs to decide whether to pull a plug. In my mom's case, she was still conscious and responsive, but unable to communicate with the breathing tube and spent a lot of time sleeping. She can also be a little stubborn, so it was hard to tell when she couldn't respond and when she wouldn't respond. So my point is, she was obviously still conscious and able to understand what was going on around her, but because she couldn't ask clarifying questions and didn't always shake her head yes or no when asked something, it's not clear she could provide meaningful consent to anything.
Do living wills really cover every possible medical situation? What happens if you have a living will and change your mind?
posted by heathkit at 7:03 PM on February 4, 2014
Do living wills really cover every possible medical situation? What happens if you have a living will and change your mind?
posted by heathkit at 7:03 PM on February 4, 2014
that's not enough! We didn't even know what to ask.
Many hospitals have a person who goes by some variation of the title "Patient Advocate". They exist to provide an extra level of interface between physicians/nurses and patients, the latter of whom often times have very little idea what's actually going on. Just because the doctor tells you what is happening does not necessarily mean that you understand what is happening. "Hi there. So your mother is in serious trouble, and you need to make a decision about a subject totally unfamiliar to you but which is nonetheless going to permanently affect both her life and yours. Oh, and we need a decision in the next fifteen minutes or so. Have fun!"
I grew up around hospitals, as my father is a physician, and I spent more than a year volunteering in clinical environments. That's given me enough insight into the environment to be able to understand just how foreign such places can be to the uninitiated. I'm certainly not in a position of thorough understanding, I'm just comfortable enough with the place (and being a lawyer, with bureaucratic systems in general) to be able to ask what I think are useful questions. But holy crap would I not want to show up in an ICU not knowing what little I do know.
posted by valkyryn at 7:05 PM on February 4, 2014 [3 favorites]
Many hospitals have a person who goes by some variation of the title "Patient Advocate". They exist to provide an extra level of interface between physicians/nurses and patients, the latter of whom often times have very little idea what's actually going on. Just because the doctor tells you what is happening does not necessarily mean that you understand what is happening. "Hi there. So your mother is in serious trouble, and you need to make a decision about a subject totally unfamiliar to you but which is nonetheless going to permanently affect both her life and yours. Oh, and we need a decision in the next fifteen minutes or so. Have fun!"
I grew up around hospitals, as my father is a physician, and I spent more than a year volunteering in clinical environments. That's given me enough insight into the environment to be able to understand just how foreign such places can be to the uninitiated. I'm certainly not in a position of thorough understanding, I'm just comfortable enough with the place (and being a lawyer, with bureaucratic systems in general) to be able to ask what I think are useful questions. But holy crap would I not want to show up in an ICU not knowing what little I do know.
posted by valkyryn at 7:05 PM on February 4, 2014 [3 favorites]
Do living wills really cover every possible medical situation?
Theoretically. The documents tend to kick in as soon as you are unable to give meaningful consent to treatment. But what they actually say is entirely up to you. You can make them as broad or as narrow as you like.
What's important to do is to combine the living will with a health care power of attorney. The former simply sets forth what you want to happen in certain circumstances. But the latter empowers a specific person to make health care decisions on your behalf using their best judgment and knowledge of your expressed wishes. A living will may or may not cover what actually happens to you, but the health care power of attorney will cover whatever situation you wind up in. It's just a question of whether your designated POA knows what you want and is willing to do it. No guarantee, but it's really helpful to have both documents going at once.
If you want to get these documents in place, call a lawyer. The same lawyers that do traditional wills usually do these documents too. Indeed, many attorneys that do estate planning will what you to do them as part of that process.
What happens if you have a living will and change your mind?
If you change your mind before you are incapacitated, you just make a new one. If you change your mind after you are incapacitated, that's basically too damn bad.
posted by valkyryn at 7:09 PM on February 4, 2014
Theoretically. The documents tend to kick in as soon as you are unable to give meaningful consent to treatment. But what they actually say is entirely up to you. You can make them as broad or as narrow as you like.
What's important to do is to combine the living will with a health care power of attorney. The former simply sets forth what you want to happen in certain circumstances. But the latter empowers a specific person to make health care decisions on your behalf using their best judgment and knowledge of your expressed wishes. A living will may or may not cover what actually happens to you, but the health care power of attorney will cover whatever situation you wind up in. It's just a question of whether your designated POA knows what you want and is willing to do it. No guarantee, but it's really helpful to have both documents going at once.
If you want to get these documents in place, call a lawyer. The same lawyers that do traditional wills usually do these documents too. Indeed, many attorneys that do estate planning will what you to do them as part of that process.
What happens if you have a living will and change your mind?
If you change your mind before you are incapacitated, you just make a new one. If you change your mind after you are incapacitated, that's basically too damn bad.
posted by valkyryn at 7:09 PM on February 4, 2014
Even if you have the right documents in place, and get your advanced directive, good luck getting those documents to follow you around from the nursing home, to ems, to the ER, to the hospital when perhaps somebody might call your physician after you've been admitted and after you've had all the care you don't don't want.
In my experience with my parents, that's about how it went. My dad had advanced directives. They were not followed when he was hospitalized for the first time. She had all the interventions, respirator, feeding tube, etc. put in because at first she/they(?) still had the hope that he could live and be taken off of those things. This is what the doctors claimed, anyway. All things considered, they shouldn't have because he dragged on pretty much incapacitated for nearly two years before Mom finally pulled the plug. It doesn't matter what your advanced directives say, it matters what your next of kin says, period. Especially when you can't talk and your wife is crying and in charge.
I would like to have some advanced directives, just in case, but my closest relative is my mother (others are too far away or just don't give a shit) and I can't trust her to let me go if there is even the slightest bit of hope she might not have to.
posted by jenfullmoon at 9:27 PM on February 4, 2014
In my experience with my parents, that's about how it went. My dad had advanced directives. They were not followed when he was hospitalized for the first time. She had all the interventions, respirator, feeding tube, etc. put in because at first she/they(?) still had the hope that he could live and be taken off of those things. This is what the doctors claimed, anyway. All things considered, they shouldn't have because he dragged on pretty much incapacitated for nearly two years before Mom finally pulled the plug. It doesn't matter what your advanced directives say, it matters what your next of kin says, period. Especially when you can't talk and your wife is crying and in charge.
I would like to have some advanced directives, just in case, but my closest relative is my mother (others are too far away or just don't give a shit) and I can't trust her to let me go if there is even the slightest bit of hope she might not have to.
posted by jenfullmoon at 9:27 PM on February 4, 2014
More than anything, more than what the oncologist said, I remember his shoes: tailored, understated, polished, offensively perfect in the presence of terminal cancer. He talked at my husband and not at my mother-in-law, who kept asking sharp questions even after she received her diagnosis that day. The doctor's exit line -- "And by the way, I'm so sorry" -- delivered as he went out the door -- made me curse his shoes harder. Fuck you, shiny shoes. Fuck you, cancer.
My husband understood everything that had been said, all of the technical details. My MIL understood the bottom line. I don't remember us crying much. She went home later and called the local hospice.
The next four months blur by: Visiting nurses, the increasing pain (MIL stretched out on the sofa in the front room, trying to get comfortable on her favorite pillow with the blue flannel sham as she talked with a nurse about adjusting meds), the daily calls to the medical staff to figure out what to add to the mix, the stupidity of confusing chemical names with brand names. The night spent with her, holding her as we both tried to sleep. The paperwork she filled out at the kitchen table as her cats batted at the pile. She was making end-of-life decisions, with the nurse's clarifications, as her cats played. The pain became hard to manage. I called hospice to ask for help, again. Hospice said: Bring her in.
To this day, I have guilt about taking her. I found her coat, helped her out the door and into my car. I delivered her to her death.
Hospice was the right call. Her room there had wallpaper and carpet and artwork and natural light and quiet. I mention that as a contrast to the hospital, where the neutral-colored walls, all four of them in different shades, and the clean-lined, flourescent-lit, ever-beeping surroundings made her agitated. She hated all of it. Hospice was gentle and calm, and everything moved at a considered pace -- and the volunteers would sit on the bed and hold her hand and bring her a flower with her morning orange juice.
Everyone there moved under one assumption: Death is coming. They did everything within their pharmaceutical power to keep her pain under control, but they also did everything to facilitate a gentle transition. No beeping machines. No limited visiting hours. Nurses who would come back a few minutes later if my MIL was asleep. It was compassionate, practical acceptance of the dying process.
I won't lie. Knowing that she was surrounded by support and immediate help eased my mind and relieved me of some duties. And they were better at it. I could focus on her, and not trying to keep the names of meds straight. Hospice knew; they called when she began actively dying.
My husband and I were with her when she died. We held her hands. A thunderstorm went on overhead. It was scary and awful to watch and wait for the breaths, to listen to the rattle, to see her cracked lips. There was nothing to do but hold hands. To be present, and my God, that was everything. I remember thinking: I have to let go of her hand now, the funeral home people have to do their work.
We had all agreed on the idea of no more, no extraordinary measures, and whatever I might have thought about end-of-life before my MIL got sick was irrelevant in the presence of her pain, and her determination. We all got on board together, knowing the end but not how we would get there. We made the best decisions we could, and, even looking back, the right calls at the right time. Her last gift to us was clarity: We knew what she wanted, and she had signed the papers to secure it. That was guidance when the situation seemed unbearable. You can't know ahead of time. But you can try to give others a framework, a rope to follow in the dark.
I can't call it a good death. I can say that her death and dying were conducted with as much compassion, pain control, and autonomy as all of us could manage. I miss her very much.
posted by MonkeyToes at 8:37 AM on February 5, 2014 [11 favorites]
My husband understood everything that had been said, all of the technical details. My MIL understood the bottom line. I don't remember us crying much. She went home later and called the local hospice.
The next four months blur by: Visiting nurses, the increasing pain (MIL stretched out on the sofa in the front room, trying to get comfortable on her favorite pillow with the blue flannel sham as she talked with a nurse about adjusting meds), the daily calls to the medical staff to figure out what to add to the mix, the stupidity of confusing chemical names with brand names. The night spent with her, holding her as we both tried to sleep. The paperwork she filled out at the kitchen table as her cats batted at the pile. She was making end-of-life decisions, with the nurse's clarifications, as her cats played. The pain became hard to manage. I called hospice to ask for help, again. Hospice said: Bring her in.
To this day, I have guilt about taking her. I found her coat, helped her out the door and into my car. I delivered her to her death.
Hospice was the right call. Her room there had wallpaper and carpet and artwork and natural light and quiet. I mention that as a contrast to the hospital, where the neutral-colored walls, all four of them in different shades, and the clean-lined, flourescent-lit, ever-beeping surroundings made her agitated. She hated all of it. Hospice was gentle and calm, and everything moved at a considered pace -- and the volunteers would sit on the bed and hold her hand and bring her a flower with her morning orange juice.
Everyone there moved under one assumption: Death is coming. They did everything within their pharmaceutical power to keep her pain under control, but they also did everything to facilitate a gentle transition. No beeping machines. No limited visiting hours. Nurses who would come back a few minutes later if my MIL was asleep. It was compassionate, practical acceptance of the dying process.
I won't lie. Knowing that she was surrounded by support and immediate help eased my mind and relieved me of some duties. And they were better at it. I could focus on her, and not trying to keep the names of meds straight. Hospice knew; they called when she began actively dying.
My husband and I were with her when she died. We held her hands. A thunderstorm went on overhead. It was scary and awful to watch and wait for the breaths, to listen to the rattle, to see her cracked lips. There was nothing to do but hold hands. To be present, and my God, that was everything. I remember thinking: I have to let go of her hand now, the funeral home people have to do their work.
We had all agreed on the idea of no more, no extraordinary measures, and whatever I might have thought about end-of-life before my MIL got sick was irrelevant in the presence of her pain, and her determination. We all got on board together, knowing the end but not how we would get there. We made the best decisions we could, and, even looking back, the right calls at the right time. Her last gift to us was clarity: We knew what she wanted, and she had signed the papers to secure it. That was guidance when the situation seemed unbearable. You can't know ahead of time. But you can try to give others a framework, a rope to follow in the dark.
I can't call it a good death. I can say that her death and dying were conducted with as much compassion, pain control, and autonomy as all of us could manage. I miss her very much.
posted by MonkeyToes at 8:37 AM on February 5, 2014 [11 favorites]
... I remember thinking: I have to let go of her hand now, the funeral home people have to do their work.
We had a really helpful social worker visit us during my Mom's death, and she mentioned that once she had passed we didn't need to call the mortuary right away. We waited probably 2-3 hours, during which we cried, held each other, wrapped her in a blanket, and each of her kids found some cutting from her garden to lay on her. I can't remember how we decided that it was time to call, but we didn't feel rushed. I'm glad we had that time.
(I wouldn't have said anything for fear that it would cause you regrets - it's too easy to find things to regret about the death of someone you love. My hope is that someone else will be able to make use of this idea, just like I was helped by this item someone else posted.)
posted by benito.strauss at 9:11 AM on February 5, 2014 [2 favorites]
We had a really helpful social worker visit us during my Mom's death, and she mentioned that once she had passed we didn't need to call the mortuary right away. We waited probably 2-3 hours, during which we cried, held each other, wrapped her in a blanket, and each of her kids found some cutting from her garden to lay on her. I can't remember how we decided that it was time to call, but we didn't feel rushed. I'm glad we had that time.
(I wouldn't have said anything for fear that it would cause you regrets - it's too easy to find things to regret about the death of someone you love. My hope is that someone else will be able to make use of this idea, just like I was helped by this item someone else posted.)
posted by benito.strauss at 9:11 AM on February 5, 2014 [2 favorites]
No regrets, benito. I salute you. Thank you for adding that beautiful detail.
posted by MonkeyToes at 9:14 AM on February 5, 2014
posted by MonkeyToes at 9:14 AM on February 5, 2014
Well, my mom ended up dying a few days ago. She had a few weeks out of the ICU, but it was still a hospital. She got to see her grandson for most of that time, which was nice. I do kind of wish we'd gone for hospice sooner, so her last days could have been more comfortable. We thought we were giving her more time, and things really did seem to be getting better. She had a PEG tube and apparently stopped digesting food last weekend, though, and that was the beginning of the end.
I live in Seattle and my parents (or parent, now I guess) are in Dallas. I was lucky enough to be here for most of the time she was in ICU, but I didn't see her in the other hospital. I was planning on flying back to see her, though. I wanted her to be comfortable, and for all of us to be there at the end. But I also didn't want to give up, or schedule her death.
I wish we'd known when to let go. I wish we'd been a little less selfish, and let her go sooner. I wish I'd been there with her, to the last minute. I wish she wasn't dead.
posted by heathkit at 11:45 PM on February 25, 2014 [2 favorites]
I live in Seattle and my parents (or parent, now I guess) are in Dallas. I was lucky enough to be here for most of the time she was in ICU, but I didn't see her in the other hospital. I was planning on flying back to see her, though. I wanted her to be comfortable, and for all of us to be there at the end. But I also didn't want to give up, or schedule her death.
I wish we'd known when to let go. I wish we'd been a little less selfish, and let her go sooner. I wish I'd been there with her, to the last minute. I wish she wasn't dead.
posted by heathkit at 11:45 PM on February 25, 2014 [2 favorites]
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