Research finds doctors & families are turning off life support too soon
May 24, 2024 12:00 PM Subscribe
After Brain Injuries, Doctors and Families Should Take More Time With Life Support Decisions, Research Finds. (Smithsonian Magazine.) A small study suggests some severe traumatic brain injury patients can later recover a level of independence or return to their pre-injury lives.
"The team used the model to compare 160 similar patients for whom life support was either withdrawn or continued. Their analysis found that many patients who had life support withdrawn would have likely died anyway. But 42 percent of those who continued on life support and survived ended up regaining some independence up to 12 months after injury.
The findings suggest a “cyclical, self-fulfilling prophecy” may be at play in trauma centers, according to a statement from Mass General Brigham. Doctors assume that patients with traumatic brain injuries will not recover or will fare poorly, which leads to the withdrawal of life support. This, in turn, results in patients’ deaths, which prompts even more decisions to withdraw life support, according to the statement."
"The team used the model to compare 160 similar patients for whom life support was either withdrawn or continued. Their analysis found that many patients who had life support withdrawn would have likely died anyway. But 42 percent of those who continued on life support and survived ended up regaining some independence up to 12 months after injury.
The findings suggest a “cyclical, self-fulfilling prophecy” may be at play in trauma centers, according to a statement from Mass General Brigham. Doctors assume that patients with traumatic brain injuries will not recover or will fare poorly, which leads to the withdrawal of life support. This, in turn, results in patients’ deaths, which prompts even more decisions to withdraw life support, according to the statement."
42 percent of those who continued on life support and survived ended up regaining some independence up to 12 months after injury.
The word "some" is doing a lot of heavy lifting in that sentence.
I anticipate there will understandably be a lot of feelings about this. I'm witnessed how little that "some" can be, and the amount of physical pain it took to get there (and that continues) along with the cost and SO many medications and family members whose life is equally stopped to fill in care for the places "some" and insurance doesn't cover.
58% do not even get to "some", and that 12-month journey can be heartbreakingly physically brutal on the injured person. This will never be an easy choice or an easy discussion - but for us here in the US, it would be a hell of a lot easier to make that leap of hope if we had options for a person to choose assisted death, if that "some" is not enough for long-term quality of life for the injured person.
I know I'm responding to recent life events, but studies like these seem dangerous without the larger context of the human costs of "some" long-term.
posted by Silvery Fish at 12:14 PM on May 24 [63 favorites]
The word "some" is doing a lot of heavy lifting in that sentence.
I anticipate there will understandably be a lot of feelings about this. I'm witnessed how little that "some" can be, and the amount of physical pain it took to get there (and that continues) along with the cost and SO many medications and family members whose life is equally stopped to fill in care for the places "some" and insurance doesn't cover.
58% do not even get to "some", and that 12-month journey can be heartbreakingly physically brutal on the injured person. This will never be an easy choice or an easy discussion - but for us here in the US, it would be a hell of a lot easier to make that leap of hope if we had options for a person to choose assisted death, if that "some" is not enough for long-term quality of life for the injured person.
I know I'm responding to recent life events, but studies like these seem dangerous without the larger context of the human costs of "some" long-term.
posted by Silvery Fish at 12:14 PM on May 24 [63 favorites]
When my dad was declining my sister started talking about "pulling the plug" even though there was no plug to pull - he was on at most some supplementary oxygen due to RSV-related hypoxia. It made me have lots of feelings, none of them good.
posted by grumpybear69 at 12:20 PM on May 24 [12 favorites]
posted by grumpybear69 at 12:20 PM on May 24 [12 favorites]
Please unplug ME at the first opportunity.
posted by outgrown_hobnail at 12:31 PM on May 24 [18 favorites]
posted by outgrown_hobnail at 12:31 PM on May 24 [18 favorites]
"Sign here for the DNR. Sign here to assume financial responsibility."
posted by snuffleupagus at 12:35 PM on May 24 [5 favorites]
posted by snuffleupagus at 12:35 PM on May 24 [5 favorites]
Yeah, the question I have is "too soon" according to who? My parents have been pretty explicit to me that they are happy with the lives they've lived, and in certain situations they'd prefer to call it quits peacefully and on a high note. Obviously, it's a serious choice and people should have as much informational available to make that choice, but the framing here seems unnecessarily judgey.
posted by coffeecat at 12:37 PM on May 24 [8 favorites]
posted by coffeecat at 12:37 PM on May 24 [8 favorites]
“If we don’t make a decision early, we might be committing these patients to a life they would not like.”without trying to discount any of the pain or difficulty common to life with disability, i will say that i am very wary of any choice that might frame death as preferable to disability for the exact reason highlighted above.
[...]
Families are asked what sort of life the patient would accept. There may be no easy answer. While healthy people may say that a life with a severe disability would be completely unacceptable, researchers speak of the “disability paradox”: Often when people become disabled, they report still having meaningful lives.
separately from that, i have been reading a lot of literature lately on the philosophy against "medicalized death" or unnecessarily prolonging the lives of dying people. these outcomes are seen as undesirable due to the pain and discomfort that can result from continuing life-prolonging treatment at all costs. on the other hand, these accounts are frequently quick to add that they don't support withdrawing treatment from patients who want to live and have a good chance of doing so; their subjects are specifically those who are too frail (and usually, though not always, close to the end of their lives anyway) to have a good prognosis even if they do survive treatment (or resuscitation).
so i wonder if the TBI patients in this study who fared better than the others had anything in common - did they skew younger or healthier than those who died while on continued life support? would any of these patients have been described as "frail"? if so, were there patients who seemed more likely to recover from such frailty? basically, are there any factors we could use to clarify which cases are more or less likely to survive given further time on life support?
i also remember reading recently about a patient's family who fought against doctors taking their loved one off life support after brain death had occurred. that article made a pretty tight case for the futility of life support in those cases. after reading this one, i feel like my own wishes are probably something like: if braindead, feel free to say goodbye; if comatose but not braindead, leave the ventilator on just in case?
but IANAD of course. just morbidly fascinated by these kinds of questions
posted by a flock of goslings at 12:47 PM on May 24 [11 favorites]
I’m always in such a weird position with this conversation because the one time it came up for me, the neurologists were wrong. Like, demonstrably wrong, my loved one walked and talked again and returned to work and is still here and speaking 12 years later levels of wrong. If I hadn’t read the medical literature myself, I’d never have known to challenge them. Doctors sometimes say more than they know. I wish this weren’t true. It really complicates trust.
posted by eirias at 12:48 PM on May 24 [39 favorites]
posted by eirias at 12:48 PM on May 24 [39 favorites]
The study in the article for anyone who is interested; doesn’t seem to be behind a paywall. Haven’t read it yet but will definitely look at it. I have been in these discussions many times over the years both professionally and personally and it is definitely a topic that resonates with me.
posted by TedW at 1:02 PM on May 24 [1 favorite]
posted by TedW at 1:02 PM on May 24 [1 favorite]
58% do not even get to "some", and that 12-month journey can be heartbreakingly physically brutal on the injured person.
a friend of mine, currently one year into chemotherapy, has been known to comment (tongue fully, painfully in cheek) ...
"or as my doctor told me, with all these miracles of modern medical science, we can prolong your suffering for years, maybe even decades."
posted by philip-random at 1:07 PM on May 24 [17 favorites]
a friend of mine, currently one year into chemotherapy, has been known to comment (tongue fully, painfully in cheek) ...
"or as my doctor told me, with all these miracles of modern medical science, we can prolong your suffering for years, maybe even decades."
posted by philip-random at 1:07 PM on May 24 [17 favorites]
A friend's elderly mother fell down the stairs in my friend's home in the middle of the night, badly injured her head, and lay there unconscious for hours until someone else in the house woke up. She had at least one stroke while lying on the stairs.
Afterwards, the discussion between my friend, his father, and his siblings (who live overseas) was about how to say goodbye. The doctors were unanimous that his mother would almost certainly not regain consciousness, and if she did, would be absolutely unable to ever have anything like a normal life. At that point, it would have been easy to withdraw life support and end it, and they were basically trying to get up the nerve to do it.
However, they couldn't all get on the same page, and they dithered for a while, waiting for siblings to arrive and see their Mom. Then a few weeks after the accident she regained consciousness. A few months after the accident she was able to enter PT and OT and start to recover speech and slowly relearn to walk. By a year after the accident she was able to live in her home, with full-time care, but able to speak to her husband and children and grandchildren and live a not-too-abnormal life for an 85-year-old who has been through significant medical difficulties.
I don't know whether she feels like it would have been better to have life support turned off shortly after the accident, but I know her children are sure glad they were unable to make that decision.
posted by bgribble at 1:13 PM on May 24 [18 favorites]
Afterwards, the discussion between my friend, his father, and his siblings (who live overseas) was about how to say goodbye. The doctors were unanimous that his mother would almost certainly not regain consciousness, and if she did, would be absolutely unable to ever have anything like a normal life. At that point, it would have been easy to withdraw life support and end it, and they were basically trying to get up the nerve to do it.
However, they couldn't all get on the same page, and they dithered for a while, waiting for siblings to arrive and see their Mom. Then a few weeks after the accident she regained consciousness. A few months after the accident she was able to enter PT and OT and start to recover speech and slowly relearn to walk. By a year after the accident she was able to live in her home, with full-time care, but able to speak to her husband and children and grandchildren and live a not-too-abnormal life for an 85-year-old who has been through significant medical difficulties.
I don't know whether she feels like it would have been better to have life support turned off shortly after the accident, but I know her children are sure glad they were unable to make that decision.
posted by bgribble at 1:13 PM on May 24 [18 favorites]
flock of goslings, I think about this a lot as well. Is the ultimate goal that we all end up in nursing homes or hospital taking handfuls of pills and hooked up to machines to eat for us, filter our blood and breathe for us?
This is morbid, but what used to be generational wealth is now going to healthcare instead of kids. Is this a good thing? A bad thing?
Ourselves and our loved ones living longer lives is a good thing, right?
posted by olykate at 1:20 PM on May 24 [6 favorites]
This is morbid, but what used to be generational wealth is now going to healthcare instead of kids. Is this a good thing? A bad thing?
Ourselves and our loved ones living longer lives is a good thing, right?
posted by olykate at 1:20 PM on May 24 [6 favorites]
But oooooh boy could this give me nightmares if I ever had.
Just a reminder we are on this site.
I do have nightmares about my daughter even though [long list of why the Sick Kids hospital team made its recommendations.] That’s sort of how these things go.
posted by warriorqueen at 1:21 PM on May 24 [15 favorites]
Just a reminder we are on this site.
I do have nightmares about my daughter even though [long list of why the Sick Kids hospital team made its recommendations.] That’s sort of how these things go.
posted by warriorqueen at 1:21 PM on May 24 [15 favorites]
I have been through, first hand, withdrawal of life support with my mother and with my husband, though neither was due to neurological insult (one Parkinson's, one cancer). Both lingered for some time, so none of us knew how their bodies could keep breathing. I also went through it less intimately with my aunt and my uncle, both of whom recovered some function in the hospital with a great deal of care and then died anyway. I'm going to go out on a limb here and say that it is really really really hard to know if you're doing the right thing, and second-guessing yourself happens. In my experience, though people like to say they want to die before they get that far, and I have a DNR on file, we rarely get to have a huge amount of control over the manner of our going out of life, so I am concentrating right now on being happy and doing some things I want to do today while I am still upright.
posted by Peach at 1:22 PM on May 24 [11 favorites]
posted by Peach at 1:22 PM on May 24 [11 favorites]
My mother's mother had a stroke that rendered her apparently brain-dead in the 1970s, before the Karen Ann Quinlan case established that you could withdraw life-prolonging measures. The doctors asked my mother (the only child and only close relative) whether she wanted to put her mother on a feeding tube and told her it would extend my grandmother's life by a few days. My grandmother lasted two full years and finally expired on my mother's birthday, never having regained consciousness or given any sign of awakening.
My mother had a horror of dying the same way and was fierce about signing DNRs. She lasted 10 days without food and water after she'd lapsed into her final unconsciousness. (She had expressed that she was ready to go for about two years before that.) Having lived through both of those traumas, visited my grandmother as a child when the lights were out and the building had been vacated, and watched my mother dwindle and take more than a week to die, I am firmly on the "cut my life support too early rather than too late" plan.
As Peach says, it's really hard to know what the right thing to do is, and it's hard not to second-guess yourself. Also agree with Peach that we should concentrate on being happy and doing what we want. Ideally we get it all done before we and our loved ones face this crisis.
Now I'm going to go out and touch grass.
posted by gentlyepigrams at 1:26 PM on May 24 [10 favorites]
My mother had a horror of dying the same way and was fierce about signing DNRs. She lasted 10 days without food and water after she'd lapsed into her final unconsciousness. (She had expressed that she was ready to go for about two years before that.) Having lived through both of those traumas, visited my grandmother as a child when the lights were out and the building had been vacated, and watched my mother dwindle and take more than a week to die, I am firmly on the "cut my life support too early rather than too late" plan.
As Peach says, it's really hard to know what the right thing to do is, and it's hard not to second-guess yourself. Also agree with Peach that we should concentrate on being happy and doing what we want. Ideally we get it all done before we and our loved ones face this crisis.
Now I'm going to go out and touch grass.
posted by gentlyepigrams at 1:26 PM on May 24 [10 favorites]
olykate - for an extremely pragmatic guide to how to avoid the outcome you described (living but not thriving) in old age, see the art of dying well by katy butler
for a more philosophical discussion of "good death" that is firmly against medicalized deaths and prolonging life at the expense of comfort/quality of living, see the lost art of dying by lydia s. dugdale
both are a little outside the scope of this article, though, since they presume this kind of decline and poor prognosis is happening around the end of a natural lifespan and i'm willing to bet the population of TBI patients covered in this study does not exclude the otherwise young and healthy (hence me wondering if the patients who had better outcomes fall along these kinds of lines or no)
posted by a flock of goslings at 1:40 PM on May 24 [7 favorites]
for a more philosophical discussion of "good death" that is firmly against medicalized deaths and prolonging life at the expense of comfort/quality of living, see the lost art of dying by lydia s. dugdale
both are a little outside the scope of this article, though, since they presume this kind of decline and poor prognosis is happening around the end of a natural lifespan and i'm willing to bet the population of TBI patients covered in this study does not exclude the otherwise young and healthy (hence me wondering if the patients who had better outcomes fall along these kinds of lines or no)
posted by a flock of goslings at 1:40 PM on May 24 [7 favorites]
I took a look at the study, this is not my field, so it's very possible that I got something wrong. To me figure 3 is the most interesting part.
For tier 3 (most severe cases among those that continued life support) at the 12 month mark out of 32 patient 25 were dead, 3 still in vegetative state (2). 1 had lower severe disability (3) and 3 had upper moderate disability (7). These numbers are very small and the fact that there were 0 cases between lower severe disability (3) and upper moderate disability (7) suggests to me that we can’t really do statistics here. The only thing I took from it was, that a decent recovery is possible, but unlikely.
The other thing that caught my eye, was that there were two cases each of upper good recovery (8) and lower good recovery (7) at 6 months for the tier 2 patients. At 12 months there was only one of each. That’s a gut wrenching story in those dry numbers.
posted by the_dreamwriter at 1:44 PM on May 24 [13 favorites]
For tier 3 (most severe cases among those that continued life support) at the 12 month mark out of 32 patient 25 were dead, 3 still in vegetative state (2). 1 had lower severe disability (3) and 3 had upper moderate disability (7). These numbers are very small and the fact that there were 0 cases between lower severe disability (3) and upper moderate disability (7) suggests to me that we can’t really do statistics here. The only thing I took from it was, that a decent recovery is possible, but unlikely.
The other thing that caught my eye, was that there were two cases each of upper good recovery (8) and lower good recovery (7) at 6 months for the tier 2 patients. At 12 months there was only one of each. That’s a gut wrenching story in those dry numbers.
posted by the_dreamwriter at 1:44 PM on May 24 [13 favorites]
in the 1970s, before the Karen Ann Quinlan case established that you could withdraw life-prolonging measures.
Wow, this brings back memories. I went to a brainy Catholic high school in the early '80s, where we had many discussions about the ethics of this. We were required to watch that Ron Howard and Mickey Rourke TV film "Act of Love," where Ron shoots a paralyzed Mickey out of mercy, and is let off the hook by the courts. We had to pick a book in the library to read and report on it, so I chose "Coma" (1977), where brain-dead patients were warehoused (and then harvested...), because even though they were brain-dead, they could not be killed. We've come a long way; here's hoping that the for-profit health group vultures will be thwarted from draining the life savings of our children.
posted by Melismata at 1:45 PM on May 24 [2 favorites]
Wow, this brings back memories. I went to a brainy Catholic high school in the early '80s, where we had many discussions about the ethics of this. We were required to watch that Ron Howard and Mickey Rourke TV film "Act of Love," where Ron shoots a paralyzed Mickey out of mercy, and is let off the hook by the courts. We had to pick a book in the library to read and report on it, so I chose "Coma" (1977), where brain-dead patients were warehoused (and then harvested...), because even though they were brain-dead, they could not be killed. We've come a long way; here's hoping that the for-profit health group vultures will be thwarted from draining the life savings of our children.
posted by Melismata at 1:45 PM on May 24 [2 favorites]
It is deeply important for me to not engage in cognitive ableism when it comes to others, and in fact I think of cognitive ableism as one of the topics Metafilter continues to really suck at. For myself and myself alone I reserve the right to have my own damn form of internal-facing-only-bigotry on that front. It’s my mind, my body (…MY ARRAKIS. MY DUNE).
And when it comes to my mind and body, I fucking well refuse to have some goddamn zombie version of myself shuffling around, wearing my skin like a suit. I am not on the greatest terms with my family but standing orders, crystal clear and sent in writing to everyone who might conceivably be asked, are that at the first sign of brain damage: pull the plug. Even for most serious purely physical injuries: pull the plug. Stubbed toe: pull the plug. You bought a sandwich at the hospital gift shop and it tastes bad: pull plug. You just happen to feel like it / for the lulz: Pull. The. Plug.
And you would think, with all that pushy asshole unreasonable request-making they’d be feeling pretty damn motivated to pull the plug. But instead all I ever get are these glum, tepid “mmmokay” bullshit replies I expect won’t actually happen. It’s like, how can I get the people who love me to feel super excited about watching me die? Cash prize for the plug puller in my will? Be even more annoying? Maybe I need to AskMetafilter.
posted by Ryvar at 3:20 PM on May 24 [6 favorites]
And when it comes to my mind and body, I fucking well refuse to have some goddamn zombie version of myself shuffling around, wearing my skin like a suit. I am not on the greatest terms with my family but standing orders, crystal clear and sent in writing to everyone who might conceivably be asked, are that at the first sign of brain damage: pull the plug. Even for most serious purely physical injuries: pull the plug. Stubbed toe: pull the plug. You bought a sandwich at the hospital gift shop and it tastes bad: pull plug. You just happen to feel like it / for the lulz: Pull. The. Plug.
And you would think, with all that pushy asshole unreasonable request-making they’d be feeling pretty damn motivated to pull the plug. But instead all I ever get are these glum, tepid “mmmokay” bullshit replies I expect won’t actually happen. It’s like, how can I get the people who love me to feel super excited about watching me die? Cash prize for the plug puller in my will? Be even more annoying? Maybe I need to AskMetafilter.
posted by Ryvar at 3:20 PM on May 24 [6 favorites]
And then here I am, the polar opposite of Ryvar above me. Even having had many dignity-destroying medical situations, my advanced directive clearly states that I want to live, no matter what.
I have a huge inner life, and cannot believe that no matter what my body is doing (or even what the science may say is/is not happening vis-a-vis brain activity) that my inner world won't keep going. My instructions say to play The West Wing and Gilmore Girls in constant rotation in the background in my hospital room and to keep talking to me and filling me in on whatever is happening in the world. (I've no doubt that enough righteous indignation will force me to come out of a coma.)
I respect everyone else's wishes for themselves, even if it would pain me to live in a world without them, even a pale, ghastly imitation. But me? I want to be here on the planet. (As my mother jokes about her own situation, but not really, "I want to be a burden." Yep, mom, me too.)
posted by The Wrong Kind of Cheese at 3:47 PM on May 24 [13 favorites]
I have a huge inner life, and cannot believe that no matter what my body is doing (or even what the science may say is/is not happening vis-a-vis brain activity) that my inner world won't keep going. My instructions say to play The West Wing and Gilmore Girls in constant rotation in the background in my hospital room and to keep talking to me and filling me in on whatever is happening in the world. (I've no doubt that enough righteous indignation will force me to come out of a coma.)
I respect everyone else's wishes for themselves, even if it would pain me to live in a world without them, even a pale, ghastly imitation. But me? I want to be here on the planet. (As my mother jokes about her own situation, but not really, "I want to be a burden." Yep, mom, me too.)
posted by The Wrong Kind of Cheese at 3:47 PM on May 24 [13 favorites]
Both of my parents have told me and my brother not to spend a dime on keeping them alive after a TBI or any need for life support, because it could completely bankrupt both of us for nothing by dragging on for years.
Gotta love when end-stage capitalism in the health-hole that is the U.S. makes the decision for you.
posted by tzikeh at 3:51 PM on May 24 [13 favorites]
Gotta love when end-stage capitalism in the health-hole that is the U.S. makes the decision for you.
posted by tzikeh at 3:51 PM on May 24 [13 favorites]
The Wrong Kind of Cheese: your comment made me realize that I should probably be clear that what I wrote was mostly tongue-in-cheek, heavily played up for effect. Though I really have told everyone that any brain damage at all = I don’t want to come back.
Life is good but it’s not great, and we’re all going to go eventually. I’m a lot more concerned about the quality than the quantity of my time here, so I view my end as less of a kicking and screaming dragged away by the Reaper affair and more of a “Welp, looks like my ride’s here, folks! See ya!” YMMV.
posted by Ryvar at 4:07 PM on May 24 [3 favorites]
Life is good but it’s not great, and we’re all going to go eventually. I’m a lot more concerned about the quality than the quantity of my time here, so I view my end as less of a kicking and screaming dragged away by the Reaper affair and more of a “Welp, looks like my ride’s here, folks! See ya!” YMMV.
posted by Ryvar at 4:07 PM on May 24 [3 favorites]
Holy shit, tzikeh, health-hole needs to be in our vocabulary yesterday if not sooner.
posted by mollweide at 4:58 PM on May 24 [2 favorites]
posted by mollweide at 4:58 PM on May 24 [2 favorites]
Gotta love when end-stage capitalism in the health-hole that is the U.S. makes the decision for you.
That's the only reason we could finally get my mom to pull the plug on my dad: insurance gave up and it would cost us out of pocket $24k/month at the time to keep him alive in a vegetative, no quality of life state. I am on team "pull the plug on me if I have no way to enjoy anything or get the stimulus I am accustomed to," BUT....
But instead all I ever get are these glum, tepid “mmmokay” bullshit replies I expect won’t actually happen. It’s like, how can I get the people who love me to feel super excited about watching me die?
I can't really trust that anyone I know would pull the plug on me--my mother didn't want to pull the plug--and unfortunately, it's whoever's nearby and able to talk that will be making that decision for you, in the end, which is why my dad was strung out for 18 months of hell.
posted by jenfullmoon at 5:51 PM on May 24 [3 favorites]
That's the only reason we could finally get my mom to pull the plug on my dad: insurance gave up and it would cost us out of pocket $24k/month at the time to keep him alive in a vegetative, no quality of life state. I am on team "pull the plug on me if I have no way to enjoy anything or get the stimulus I am accustomed to," BUT....
But instead all I ever get are these glum, tepid “mmmokay” bullshit replies I expect won’t actually happen. It’s like, how can I get the people who love me to feel super excited about watching me die?
I can't really trust that anyone I know would pull the plug on me--my mother didn't want to pull the plug--and unfortunately, it's whoever's nearby and able to talk that will be making that decision for you, in the end, which is why my dad was strung out for 18 months of hell.
posted by jenfullmoon at 5:51 PM on May 24 [3 favorites]
jenfullmoon: I can't really trust that anyone I know would pull the plug on me--
Living. Fucking. Will. Other than my taxes, this is the only Grown-Up document I have.
posted by tzikeh at 6:07 PM on May 24 [6 favorites]
Living. Fucking. Will. Other than my taxes, this is the only Grown-Up document I have.
posted by tzikeh at 6:07 PM on May 24 [6 favorites]
I was the health representative for my beloved aunt and ended up having to make end of life decisions for her after she had a stroke/brain bleed. She had a clear paragraph in her health representative document stating she did not want to be kept alive via artificial measures, and she had told us all many times what she did and did not want, for which I am eternally grateful. However, she did not have a MOST (Medical Orders for Scope of Treatment). This is a document that gives specifics about what kinds of treatment you do and don’t want if you are unable to speak for yourself after a medical event. For example:
So. Make sure your family knows your wishes AND make sure they know the details of the level of care you do or don’t want. Apparently MOST is a term from BC, other Canadian provinces call it “Goals of Care” and in the US it is called the MOLST or POLST (don’t know what that stands for). I don’t know what the equivalent is in other places, but I bet most countries have one.
posted by hurdy gurdy girl at 6:36 PM on May 24 [9 favorites]
I did have help from my cousin who is a medical professional, and from my aunt’s care team. But in the end it was completely up to me. All I could do was my best.
- No CPR. Supportive care such as nursing care, relief of pain, control of fever, provision of fluids and continued management of standing chronic conditions.
- Option 2 (M2): No CPR. Option 1 plus therapeutic measure and medications to manage acute conditions within the limits of residential or other facility or program to which the patient/resident is admitted.
- Option 3 (M3): No CPR. Option 2 plus admission to an acute care hospital (if not already admitted) for medical/surgical treatment as indicated. No referral to critical care.
- Option 4 (C1): No CPR. Maximum therapeutic effort as Option 3 (M3) including referral to critical care but not including intubation and ventilation.
- Option 5 (C2): No CPR. Maximum therapeutic effort as Option 4 (C1) including referral to critical care and including intubation and ventilation.
- Attempt CPR: In the event of acute medical event, maximum therapeutic effort including referral to Critical Care and Intubation.
So. Make sure your family knows your wishes AND make sure they know the details of the level of care you do or don’t want. Apparently MOST is a term from BC, other Canadian provinces call it “Goals of Care” and in the US it is called the MOLST or POLST (don’t know what that stands for). I don’t know what the equivalent is in other places, but I bet most countries have one.
posted by hurdy gurdy girl at 6:36 PM on May 24 [9 favorites]
A disabled life is worth living.
posted by tiny frying pan at 6:57 AM on May 25 [11 favorites]
posted by tiny frying pan at 6:57 AM on May 25 [11 favorites]
Nobody on here said it wasn't, tiny frying pan. But I also think ALL people should have the right to choose how they exit this world, and no that does not make them ableist or hateful of disabled people. You certainly have the right to choose life at all costs for yourself, but other people have the right to not share that wish.
Personally I would rather make a swift, peaceful exit than drag it out for months or years while bankrupting my family in the process. It might be gruesome, but the harsh truth is that nobody gets out of here alive - it's unfortunate that we as a society are so uncomfortable with that inescapable fact and so bad at managing it.
posted by photo guy at 7:17 AM on May 25 [9 favorites]
Personally I would rather make a swift, peaceful exit than drag it out for months or years while bankrupting my family in the process. It might be gruesome, but the harsh truth is that nobody gets out of here alive - it's unfortunate that we as a society are so uncomfortable with that inescapable fact and so bad at managing it.
posted by photo guy at 7:17 AM on May 25 [9 favorites]
tiny frying pan: A disabled life is worth living
Define "disabled," because that covers a nearly infinite amount of ground. No one here is saying disabled people shouldn't be alive or anything that veers off into "death panels" and eugenics--the discussion seems to be centered on commenters' personal limits. Each person should get to make that decision for themselves. (Again, absolutely no one is arguing for medical professionals or the government to make this decision for somebody. Personal.)
On lack of preview - yeah, what photo guy said right above.
posted by tzikeh at 7:20 AM on May 25 [3 favorites]
Define "disabled," because that covers a nearly infinite amount of ground. No one here is saying disabled people shouldn't be alive or anything that veers off into "death panels" and eugenics--the discussion seems to be centered on commenters' personal limits. Each person should get to make that decision for themselves. (Again, absolutely no one is arguing for medical professionals or the government to make this decision for somebody. Personal.)
On lack of preview - yeah, what photo guy said right above.
posted by tzikeh at 7:20 AM on May 25 [3 favorites]
Given that on several different occasions healthy Disabled people have woken up from routine surgeries to find that hospital staff illegally put Do Not Resuscitate bracelets on them while they were unconscious, I do not think we are in any danger of "over-valuing" Disabled lives.
posted by chariot pulled by cassowaries at 10:34 AM on May 25 [9 favorites]
posted by chariot pulled by cassowaries at 10:34 AM on May 25 [9 favorites]
again: Often when people become disabled, they report still having meaningful lives.
That money is part of the equation is another indictment of the for-profit, inefficient, cruel US medical care system. If people were paid fairly, with good benefits, generational wealth would be a luxury. I think places where this is the case are much better places for people to live.
If all I could do was read books, listen to music, watch movies and tv of my choice, and be able to be outside sometimes, I would choose to live. Some friendly human contact, too. In the US, old people are treated like unwanted possessions to be stored, parked in front of a tv whose channel is changed by whoever is able. We can afford to provide quality health care to every single person. We can afford to provide nursing/ old age care that is decent, safe, and caring. We can afford decent disability benefits and accommodation for every single person. In the US, we choose to fund an enormous war budget that subsidizes obscenely profitable war industries and lots of political graft. Every year I get older, I see the acceleration of Unregulated, Untaxed, Capitalism and the harm it causes. It should be criminal to allow or assist someone to die because their children can't afford to live. Not in this wealthy nation. Not anywhere.
My aunt had dementia and clear instructions that her life not be prolonged in that circumstance; her wishes were respected. My mother, her sister, died of COPD at 87, weighed @ 60 lbs, and would have loved to live longer. Both were privileged to make that decision without considering the financial cost. I wish that for everyone.
posted by theora55 at 12:12 PM on May 25 [4 favorites]
That money is part of the equation is another indictment of the for-profit, inefficient, cruel US medical care system. If people were paid fairly, with good benefits, generational wealth would be a luxury. I think places where this is the case are much better places for people to live.
If all I could do was read books, listen to music, watch movies and tv of my choice, and be able to be outside sometimes, I would choose to live. Some friendly human contact, too. In the US, old people are treated like unwanted possessions to be stored, parked in front of a tv whose channel is changed by whoever is able. We can afford to provide quality health care to every single person. We can afford to provide nursing/ old age care that is decent, safe, and caring. We can afford decent disability benefits and accommodation for every single person. In the US, we choose to fund an enormous war budget that subsidizes obscenely profitable war industries and lots of political graft. Every year I get older, I see the acceleration of Unregulated, Untaxed, Capitalism and the harm it causes. It should be criminal to allow or assist someone to die because their children can't afford to live. Not in this wealthy nation. Not anywhere.
My aunt had dementia and clear instructions that her life not be prolonged in that circumstance; her wishes were respected. My mother, her sister, died of COPD at 87, weighed @ 60 lbs, and would have loved to live longer. Both were privileged to make that decision without considering the financial cost. I wish that for everyone.
posted by theora55 at 12:12 PM on May 25 [4 favorites]
A disabled life is worth living.
Nobody on here said it wasn't, tiny frying pan. But I also think ALL people should have the right to choose how they exit this world, and no that does not make them ableist or hateful of disabled people.
Given some of these comments, I felt it needed to be said. I will note that your rebuttal acts like I disagree with people being given the right to decide how their life looks moving forward, when I said nothing of the kind, nor anything controversial. It sounds like an "all lives matter" kind of rebuttal to my ear, not accusing you of anything .
This article is NOT talking about someone deciding for themselves! It is about OTHERS, including a doctor, saying someone won't have a good quality of life, so they're pulling support too soon! That's entirely different from someone deciding for themselves, and in fact DOES display quite a LOT of ableism from the people making decisions about quality of life for someone else.
posted by tiny frying pan at 12:36 PM on May 25 [5 favorites]
Nobody on here said it wasn't, tiny frying pan. But I also think ALL people should have the right to choose how they exit this world, and no that does not make them ableist or hateful of disabled people.
Given some of these comments, I felt it needed to be said. I will note that your rebuttal acts like I disagree with people being given the right to decide how their life looks moving forward, when I said nothing of the kind, nor anything controversial. It sounds like an "all lives matter" kind of rebuttal to my ear, not accusing you of anything .
This article is NOT talking about someone deciding for themselves! It is about OTHERS, including a doctor, saying someone won't have a good quality of life, so they're pulling support too soon! That's entirely different from someone deciding for themselves, and in fact DOES display quite a LOT of ableism from the people making decisions about quality of life for someone else.
posted by tiny frying pan at 12:36 PM on May 25 [5 favorites]
I would want to still have some quality of life, which my dad did not have because he was lying in a bed, unable to communicate, chew, or probably even see very well. "Locked-in syndrome" was mentioned. I don't want that. What I'm worried about is that even if I have the right paperwork, it might very well be ignored in the heat of the moment when a live person is there and speaking. I found out eventually that my father DID have paperwork of that nature, but my mother elected to keep trying to save him, not really realizing where this was going.
I realize this sounds like I need to assign those things to someone else, but I'm reluctant to give it to a friend in the event that the friendship changes, and my family isn't very close, and I do think having someone who lives close by to you to do that is crucial.
posted by jenfullmoon at 12:39 PM on May 25 [1 favorite]
I realize this sounds like I need to assign those things to someone else, but I'm reluctant to give it to a friend in the event that the friendship changes, and my family isn't very close, and I do think having someone who lives close by to you to do that is crucial.
posted by jenfullmoon at 12:39 PM on May 25 [1 favorite]
I mean, if you need to "yeah but" something as basic as "a disabled life is worth living," I do think there is possibly some unexamined ableism there.
posted by tiny frying pan at 12:47 PM on May 25 [4 favorites]
posted by tiny frying pan at 12:47 PM on May 25 [4 favorites]
It sounds like an "all lives matter" kind of rebuttal to my ear, not accusing you of anything .
Wow. Just wow. And this is why I don't talk to American leftists any more. It is possible to have a civilized discussion with differing viewpoints without pulling the "you're racist" card. You might be directly accusing but you're heavily implying it.
posted by photo guy at 11:12 PM on May 25 [5 favorites]
Wow. Just wow. And this is why I don't talk to American leftists any more. It is possible to have a civilized discussion with differing viewpoints without pulling the "you're racist" card. You might be directly accusing but you're heavily implying it.
posted by photo guy at 11:12 PM on May 25 [5 favorites]
A disabled life is worth living.
I already live a disabled life. I was diagnosed with a chronic illness that I knew would render me increasingly disabled before I graduated high school. I've contemplated what levels of disability and what sorts of mental and physical limitations would make life unbearable for me for more than 35 years. If not wanting to lie in a bed getting sores for two years, my hand curled into itself so hard that it cannot be straightened even after death, not able to communicate, and surviving on nutrition from a feeding tube because I cannot eat is internalized ableism, I willingly cop. But please consider that other people participating in this conversation may also be disabled and may have thoughtfully arrived at all sorts of conclusions on where life should end, what the good life is, and when life stops being worth living.
posted by gentlyepigrams at 8:04 AM on May 26 [8 favorites]
I already live a disabled life. I was diagnosed with a chronic illness that I knew would render me increasingly disabled before I graduated high school. I've contemplated what levels of disability and what sorts of mental and physical limitations would make life unbearable for me for more than 35 years. If not wanting to lie in a bed getting sores for two years, my hand curled into itself so hard that it cannot be straightened even after death, not able to communicate, and surviving on nutrition from a feeding tube because I cannot eat is internalized ableism, I willingly cop. But please consider that other people participating in this conversation may also be disabled and may have thoughtfully arrived at all sorts of conclusions on where life should end, what the good life is, and when life stops being worth living.
posted by gentlyepigrams at 8:04 AM on May 26 [8 favorites]
I have spent a year of my life on medication with a cognitive impairment side effect of -30 IQ points, and yes that was a formal diagnostic assessment. "Okay but Ryvar I've seen some of your comments on technical subjects and-" still very high, sure, but IQ measures perhaps 40~50% of the total spectrum of intelligence and the impairment was not limited to just those areas.
I was not disabled by any stretch, but I was a less than a shadow of my true self and still bright enough to fully appreciate what I had lost, every waking moment. It was horrifying in ways that are impossible to describe. I have lived far more of Flowers for Algernon than I would wish on my worst enemy. When I say I would rather die than wake up after suffering any amount of brain damage I am speaking from terrible, skin-crawling experience.
A disabled life can be worth living. But it can also be worth dying to avoid. It is a complex calculus of type, severity, and the individual in question that determines which - not platitudes, not well-meaning blanket assertions, and not any outside opinion. Only the person facing disability.
I understand that people might be coming from a place where they have seen disabled people they love being horribly mistreated, or have been mistreated themselves, and there is a natural defensive reaction stemming from that experience. But you have got to leave space for people who have seen the other - or both - sides of the coin and not just insinuate that all who disagree with you (which is what a "yes, but" dismissal accomplishes) are ableist. There is more than enough legitimate ableism in our society to focus our ire on that rather than each other.
posted by Ryvar at 11:36 AM on May 26 [2 favorites]
I was not disabled by any stretch, but I was a less than a shadow of my true self and still bright enough to fully appreciate what I had lost, every waking moment. It was horrifying in ways that are impossible to describe. I have lived far more of Flowers for Algernon than I would wish on my worst enemy. When I say I would rather die than wake up after suffering any amount of brain damage I am speaking from terrible, skin-crawling experience.
A disabled life can be worth living. But it can also be worth dying to avoid. It is a complex calculus of type, severity, and the individual in question that determines which - not platitudes, not well-meaning blanket assertions, and not any outside opinion. Only the person facing disability.
I understand that people might be coming from a place where they have seen disabled people they love being horribly mistreated, or have been mistreated themselves, and there is a natural defensive reaction stemming from that experience. But you have got to leave space for people who have seen the other - or both - sides of the coin and not just insinuate that all who disagree with you (which is what a "yes, but" dismissal accomplishes) are ableist. There is more than enough legitimate ableism in our society to focus our ire on that rather than each other.
posted by Ryvar at 11:36 AM on May 26 [2 favorites]
Most participants were white guys, in their 40s, with reliable access to healthcare.
Table 1: Select Demographic and Clinical Characteristics.
The patients followed in this small study were more likely to survive, and "regain at least partial independence (often categorized as a 'favorable outcome') by 6 months post-injury," after withdrawal of life-sustaining treatment; see the original clinical trial NCT02119182 criteria. The traumatic brain injury did not occur with significant related injuries (burns, for example; polytrauma/TBI Facilities VA map) or health conditions. The TBI was identified within 24 hours of emergency-department arrival. Participants had known health histories, and good post-TBI medical care. The Department of Defense provided funding for this work, as did the National Institute of Neurological Disorders and Stroke (NINDS), the NIDILRR, the National Institutes of Health (NIH) Director’s Office, and the US Dept. of Energy. [DoD, NINDS, NIH & others are part of the Federal Interagency Traumatic Brain Injury Research Informatics System (FITBIR); faq, press releases]
Some trial exclusion criteria:
- Significant polytrauma that would interfere with follow-up and outcome assessment
- Major debilitating baseline mental health disorders (e.g. schizophrenia or bipolar disorder) that would interfere with the validity of outcome assessment due to TBI
- Patients on psychiatric hold (e.g. 5150, 5250)
- Major debilitating neurological disease (e.g. stroke, CVA, dementia, tumor) impairing baseline awareness, cognition, or validity of outcome assessment due to TBI
- Significant history of pre-existing conditions that would interfere with likelihood of follow-up and validity of outcome assessment due to TBI (e.g. major substance abuse, alcoholism, end-stage cancers, learning disabilities, developmental disorders)
- Prisoners or patients in custody
- Low likelihood of follow-up (e.g participant or family indicating low interest, residence in another state or country, homelessness or lack of reliable contacts)
Precarity, USA
posted by Iris Gambol at 1:04 PM on May 26 [2 favorites]
Table 1: Select Demographic and Clinical Characteristics.
The patients followed in this small study were more likely to survive, and "regain at least partial independence (often categorized as a 'favorable outcome') by 6 months post-injury," after withdrawal of life-sustaining treatment; see the original clinical trial NCT02119182 criteria. The traumatic brain injury did not occur with significant related injuries (burns, for example; polytrauma/TBI Facilities VA map) or health conditions. The TBI was identified within 24 hours of emergency-department arrival. Participants had known health histories, and good post-TBI medical care. The Department of Defense provided funding for this work, as did the National Institute of Neurological Disorders and Stroke (NINDS), the NIDILRR, the National Institutes of Health (NIH) Director’s Office, and the US Dept. of Energy. [DoD, NINDS, NIH & others are part of the Federal Interagency Traumatic Brain Injury Research Informatics System (FITBIR); faq, press releases]
Some trial exclusion criteria:
- Significant polytrauma that would interfere with follow-up and outcome assessment
- Major debilitating baseline mental health disorders (e.g. schizophrenia or bipolar disorder) that would interfere with the validity of outcome assessment due to TBI
- Patients on psychiatric hold (e.g. 5150, 5250)
- Major debilitating neurological disease (e.g. stroke, CVA, dementia, tumor) impairing baseline awareness, cognition, or validity of outcome assessment due to TBI
- Significant history of pre-existing conditions that would interfere with likelihood of follow-up and validity of outcome assessment due to TBI (e.g. major substance abuse, alcoholism, end-stage cancers, learning disabilities, developmental disorders)
- Prisoners or patients in custody
- Low likelihood of follow-up (e.g participant or family indicating low interest, residence in another state or country, homelessness or lack of reliable contacts)
Precarity, USA
posted by Iris Gambol at 1:04 PM on May 26 [2 favorites]
My husband (white cis straight middle class) was in a bad car collision when he was 23. Bad like extricated from his vehicle by the Jaws of Life. TBI. Coma. Doctors told his parents, in another state, not to bother rushing to the hospital because he would be dead by the time they arrived. Etc.
Of course, his parents got on the first flight they could, authorized major surgeries, and hoped for the best. He was in the coma for one month. When he woke up, his first words were, "Happy days are here again." According to my mother in law, the nurse who heard this took it as a sign that his brain was irretrievably detached from reality. My mother in law said, "No, it's fine, that's exactly his sense of humor! That's him in there."
He had to learn how to do basic life things again, like walking. He had to figure out compensation strategies for things that weren't easy any more that he'd never needed to think about before, like thinking, focus, and recall. But he was able to go back to work in tech, where bullshitting to cover up those cognitive challenges became his default, to the point that he wasn't able to stop bullshitting to me about it until we'd been married for 2 years. In the past year, as his mother has experienced significant cognitive decline after her first covid infection, he's said to her that while of course he too experienced depression about cognitive challenges, for a long time now he's thought of them merely as a different lens.
He brought disability perspectives onto my radar, and whew I keep unpacking my own ableism more and more every day. We wrote up our Living Wills differently, though: my strong inclination for my entire life has been pull my plug, but for his sake I said to keep me hooked up for 2 weeks. His says he wants to be kept hooked up for six weeks. But we've been in a financial rough patch for the past couple of years, so it's just occurred to me that revisiting this may be in order. tzikeh's phrase "health hole that is the US" is apt: so many people who would otherwise prefer to live, can't afford to.
posted by cybercoitus interruptus at 2:49 PM on May 26 [5 favorites]
Of course, his parents got on the first flight they could, authorized major surgeries, and hoped for the best. He was in the coma for one month. When he woke up, his first words were, "Happy days are here again." According to my mother in law, the nurse who heard this took it as a sign that his brain was irretrievably detached from reality. My mother in law said, "No, it's fine, that's exactly his sense of humor! That's him in there."
He had to learn how to do basic life things again, like walking. He had to figure out compensation strategies for things that weren't easy any more that he'd never needed to think about before, like thinking, focus, and recall. But he was able to go back to work in tech, where bullshitting to cover up those cognitive challenges became his default, to the point that he wasn't able to stop bullshitting to me about it until we'd been married for 2 years. In the past year, as his mother has experienced significant cognitive decline after her first covid infection, he's said to her that while of course he too experienced depression about cognitive challenges, for a long time now he's thought of them merely as a different lens.
He brought disability perspectives onto my radar, and whew I keep unpacking my own ableism more and more every day. We wrote up our Living Wills differently, though: my strong inclination for my entire life has been pull my plug, but for his sake I said to keep me hooked up for 2 weeks. His says he wants to be kept hooked up for six weeks. But we've been in a financial rough patch for the past couple of years, so it's just occurred to me that revisiting this may be in order. tzikeh's phrase "health hole that is the US" is apt: so many people who would otherwise prefer to live, can't afford to.
posted by cybercoitus interruptus at 2:49 PM on May 26 [5 favorites]
thanks for the additional context, Iris Gambol, this answers a few of the questions i had.
i have noticed that on metafilter when the subject is related to life-altering disability and other end-of-life conditions, the conversation frequently turns to what conditions a given commenter would find so unbearable as to want to “pull the plug.” i’m not surprised to see them again under this article even though it suggests that “pulling the plug” is far from the inevitable or only reasonable choice in such situations. in the face of such comments — the type that proclaim “i’d rather die than be in xyz condition”, when that condition is severe disability — i think a reminder that disabled lives are worth living is not uncalled for. the defensive responses to this reminder strike me as underlining the need for such reminders in the first place.
if an analogy would help, imagine the article was about how surprisingly positive health outcomes have been discovered in patients diagnosed with morbid obesity, and a bunch of the responses were along the lines of “that’s fine, but if i ever got that fat i’d just walk into the woods never to be seen again.” like, you have every right to make that choice for yourself, but saying so at any available opportunity can be off putting, particularly to people who would choose differently.
posted by a flock of goslings at 4:25 PM on May 26 [7 favorites]
i have noticed that on metafilter when the subject is related to life-altering disability and other end-of-life conditions, the conversation frequently turns to what conditions a given commenter would find so unbearable as to want to “pull the plug.” i’m not surprised to see them again under this article even though it suggests that “pulling the plug” is far from the inevitable or only reasonable choice in such situations. in the face of such comments — the type that proclaim “i’d rather die than be in xyz condition”, when that condition is severe disability — i think a reminder that disabled lives are worth living is not uncalled for. the defensive responses to this reminder strike me as underlining the need for such reminders in the first place.
if an analogy would help, imagine the article was about how surprisingly positive health outcomes have been discovered in patients diagnosed with morbid obesity, and a bunch of the responses were along the lines of “that’s fine, but if i ever got that fat i’d just walk into the woods never to be seen again.” like, you have every right to make that choice for yourself, but saying so at any available opportunity can be off putting, particularly to people who would choose differently.
This article is NOT talking about someone deciding for themselves! It is about OTHERS, including a doctor, saying someone won't have a good quality of life, so they're pulling support too soon!i agree with this.
I do not think we are in any danger of "over-valuing" Disabled lives.and with this. which is why “disabled lives are worth living” did not warrant the response it’s gotten here. if you don’t object to the statement, there’s no need for you to add “but just speaking for myself personally, i would end my life before xyz level of disability” — we already know. that’s the default stance, in fact. that’s why it had to be said in the first place.
posted by a flock of goslings at 4:25 PM on May 26 [7 favorites]
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But oooooh boy could this give me nightmares if I ever had.
posted by The Pluto Gangsta at 12:09 PM on May 24 [11 favorites]