Alive Inside
January 17, 2018 9:51 AM Subscribe
Across the country each year, thousands of people are wrongly labeled unconscious after suffering severe brain injuries. Among the survivors, a few, including Nick Tullier, make it to a Houston rehab hospital, where those with even the worst prognoses get a shot at recovery. (SLHoustonChronicle)
Thousands of people are discharged to nursing homes or acute care hospitals each year, assumed to be unconscious after suffering a severe brain injury. Experts now believe a staggering number of these patients — more than 40 percent, according to some estimates — are covertly aware, in what scientists have dubbed the "minimally conscious state."
They are trapped inside themselves, mislabeled by physicians untrained in identifying subtle signs of consciousness and cut off from therapy by insurance companies unwilling to cover people seemingly damaged beyond repair. Some never even make it out of the intensive care unit, where doctors and nurses too often prod families to withdraw life support, apparently unaware of the brain's ability to heal and rewire itself over the course of months and even years.
Thousands of people are discharged to nursing homes or acute care hospitals each year, assumed to be unconscious after suffering a severe brain injury. Experts now believe a staggering number of these patients — more than 40 percent, according to some estimates — are covertly aware, in what scientists have dubbed the "minimally conscious state."
They are trapped inside themselves, mislabeled by physicians untrained in identifying subtle signs of consciousness and cut off from therapy by insurance companies unwilling to cover people seemingly damaged beyond repair. Some never even make it out of the intensive care unit, where doctors and nurses too often prod families to withdraw life support, apparently unaware of the brain's ability to heal and rewire itself over the course of months and even years.
Previously on MeFi: Locked-In Man - "Martin Pistorius spent more than a decade unable to move or communicate, fearing he would be alone, trapped, forever. NPR's new show Invisibilia tells how his mind helped him create a new life."
posted by Mr.Know-it-some at 12:14 PM on January 17, 2018
posted by Mr.Know-it-some at 12:14 PM on January 17, 2018
> showbiz_liz:
"This is basically my worst nightmare and I'm not sure I can even read this article."
You and me both.
posted by Samizdata at 12:19 PM on January 17, 2018 [1 favorite]
"This is basically my worst nightmare and I'm not sure I can even read this article."
You and me both.
posted by Samizdata at 12:19 PM on January 17, 2018 [1 favorite]
Yes, this is my worst nightmare too. That it could happen to me, or someone I love.
When doctors remove life support, or "pull the plug", are they really actually letting the patient suffocate? What if the person is [minimally] conscious after all? Isn't there a more humane way to end someone's life (if it should be ended at all)? How horrible.
posted by kitcat at 12:20 PM on January 17, 2018
When doctors remove life support, or "pull the plug", are they really actually letting the patient suffocate? What if the person is [minimally] conscious after all? Isn't there a more humane way to end someone's life (if it should be ended at all)? How horrible.
posted by kitcat at 12:20 PM on January 17, 2018
Isn't there a more humane way to end someone's life (if it should be ended at all)?
Well, of course there is, but it's legally murder in most of America.
posted by showbiz_liz at 12:23 PM on January 17, 2018 [4 favorites]
Well, of course there is, but it's legally murder in most of America.
posted by showbiz_liz at 12:23 PM on January 17, 2018 [4 favorites]
Will ya look at that — the insurance company decides to be the bad guy, once again.
posted by Big Al 8000 at 12:27 PM on January 17, 2018 [1 favorite]
posted by Big Al 8000 at 12:27 PM on January 17, 2018 [1 favorite]
For an extra shudder, another previously (Minimally Conscious State)
posted by Static Vagabond at 12:36 PM on January 17, 2018
posted by Static Vagabond at 12:36 PM on January 17, 2018
I read a fiction mystery with this theme, "Locked In" by Marcia Muller". The protagonist had been shot in the head and was in a coma, but was conscious. I had no idea it was a real and somewhat common occurrence. Very scary.
posted by mermayd at 12:54 PM on January 17, 2018
posted by mermayd at 12:54 PM on January 17, 2018
My family is under strict instructions to pull the damn plug, not lug my body around for some chance of fragmentary recovery, so these kind of stories mostly make me roll my eyes and hope they don't start suddenly buying into the fantasy. Why the hell would you *want* to survive in a 'minimally conscious' state? As for Tullier, the big recovery appears to be he managed to repeat 'hello' when prompted. Woohoo.
I'd rather be dead, thanks.
posted by tavella at 12:57 PM on January 17, 2018 [12 favorites]
I'd rather be dead, thanks.
posted by tavella at 12:57 PM on January 17, 2018 [12 favorites]
The trouble with all the “OMG I’d rather be dead” responses is that there are studies showing that a surprising number of people with locked in syndrome in fact say they’re glad to be alive.
This article itself refers to similar studies that show that what people say before they have an accident (“I wouldn’t want to live if I was paralysed”) is an unreliable indicator of how the same people feel after acquiring that disability.
It's an extreme end of the spectrum, but the "I'd rather be dead" response makes me uncomfortable because it is undeniably, even if distantly, related to the idea that a disabled life is less worth living. Don't get me wrong, I have no idea how I'd feel in that situation. But the evidence suggests that, really, none of us do, even if we think we're certain. That's one of the reasons it's so complex, and "NEVER, KILL ME FIRST" as a response to this kind of fascinating article doesn't really help any of us move towards understanding that complexity.
posted by penguin pie at 1:35 PM on January 17, 2018 [22 favorites]
This article itself refers to similar studies that show that what people say before they have an accident (“I wouldn’t want to live if I was paralysed”) is an unreliable indicator of how the same people feel after acquiring that disability.
It's an extreme end of the spectrum, but the "I'd rather be dead" response makes me uncomfortable because it is undeniably, even if distantly, related to the idea that a disabled life is less worth living. Don't get me wrong, I have no idea how I'd feel in that situation. But the evidence suggests that, really, none of us do, even if we think we're certain. That's one of the reasons it's so complex, and "NEVER, KILL ME FIRST" as a response to this kind of fascinating article doesn't really help any of us move towards understanding that complexity.
posted by penguin pie at 1:35 PM on January 17, 2018 [22 favorites]
Two words: living will.
Make your wishes known before you can't express them.
posted by Construction Concern at 1:44 PM on January 17, 2018 [1 favorite]
Make your wishes known before you can't express them.
posted by Construction Concern at 1:44 PM on January 17, 2018 [1 favorite]
Yeah, ask a teenager, and a lot of them will say they'd rather die before they're old and "gross." A whole lot of young people can't imagine being old and infirm and wanting to be alive. I've heard teenagers say they'd rather be dead before being in a wheelchair. But guess what? As we get older, or get sicker, a whole lot of us decide that being alive, even in a "reduced" state, is better than being dead. These folks are living through a more extreme version of that situation. And if they're conscious and able to make a decision, then they should get to have a voice.
I kind of find it more horrific than I can imagine that I might be conscious and okay and hopeful about my prospects only to have folks unplug me the very same week I got bashed in the head.
That, to me, is what's more horrifying.
I met people when I was a CNA who everyone thought was in a "persistent vegetative state" that I thought were definitely responding to me and to what station was on the radio. Now I wonder if I was the one who was right rather than delusional.
posted by RedEmma at 2:15 PM on January 17, 2018 [12 favorites]
I kind of find it more horrific than I can imagine that I might be conscious and okay and hopeful about my prospects only to have folks unplug me the very same week I got bashed in the head.
That, to me, is what's more horrifying.
I met people when I was a CNA who everyone thought was in a "persistent vegetative state" that I thought were definitely responding to me and to what station was on the radio. Now I wonder if I was the one who was right rather than delusional.
posted by RedEmma at 2:15 PM on January 17, 2018 [12 favorites]
Yeah, this is absolutely my worst nightmare. In fact, I have made my husband promise that, even if he thinks I'm still in there, alert, but unable to do anything about it, he's to let me die. ESPECIALLY if he thinks I'm still in there and alert, because I think I would lose my sanity very, very quickly.
posted by sarcasticah at 3:11 PM on January 17, 2018
posted by sarcasticah at 3:11 PM on January 17, 2018
When doctors remove life support, or "pull the plug", are they really actually letting the patient suffocate?
My experience is that they make the patient "comfortable" by upping their painkillers to an amount that depresses respiration. My experience was also that the person did not suffocate as much as they simply stopped breathing, much like a machine winding down. There was no resistance and it was peaceful.
Also, I recently had a (somewhat) near death experience (getting a straight answer about my actual condition has been frustraring). Basically, I was hemorrhaging and the amount of my blood loss meant I had no blood pressure and my heart rate was very erratic. I always thought I would fight to be alive but in this situation my oxygen-starved brain and I assume a flood of some nice chemicals (domamine?) meant I was perfectly ok when the paramedics in the ambulance discussed end of life wishes with me. I didn't even care to answer because I was fine with dying right then and there, even though I have young children and a million things on my to-do list. So, I was "conscious", but really not there.
posted by saucysault at 3:18 PM on January 17, 2018 [4 favorites]
My experience is that they make the patient "comfortable" by upping their painkillers to an amount that depresses respiration. My experience was also that the person did not suffocate as much as they simply stopped breathing, much like a machine winding down. There was no resistance and it was peaceful.
Also, I recently had a (somewhat) near death experience (getting a straight answer about my actual condition has been frustraring). Basically, I was hemorrhaging and the amount of my blood loss meant I had no blood pressure and my heart rate was very erratic. I always thought I would fight to be alive but in this situation my oxygen-starved brain and I assume a flood of some nice chemicals (domamine?) meant I was perfectly ok when the paramedics in the ambulance discussed end of life wishes with me. I didn't even care to answer because I was fine with dying right then and there, even though I have young children and a million things on my to-do list. So, I was "conscious", but really not there.
posted by saucysault at 3:18 PM on January 17, 2018 [4 favorites]
The trouble with all the “OMG I’d rather be dead” responses is that there are studies showing that a surprising number of people with locked in syndrome in fact say they’re glad to be alive.
locked-in syndrome != minimally conscious. In fact, nearly entirely opposite. In that case my actual self and mind would be intact. Could I find life satisfactory? If I had a blink-directed computer access, possibly so. And maybe not, but I would be there and able to discuss my own choices.
If my brain is mostly destroyed, then I'm gone. What would be left would no longer be able to actually think enough to make choices or plan, just maybe some minimal reactions to things around me. And I don't want that corpse of who I was causing other people to suffer. Would what was left be actively unhappy? Being unhappy requires a level of understanding; instead you can suffer or not suffer. People at the end of Alzheimer's can be quite peaceful; they no longer even have enough executive function to be confused and thus unhappy. From my experience, their families don't find this an awesome state that should be maintained at all costs.
(And frankly, that's not much of a study. The response group was doubly self selected, in being members of an association for actively supporting locked-in people, and in being the half of those who were willing to answer the survey. On top of that, it was filtered entirely through caregivers, and even then... nearly half of the 'happy' were reported as wanting to be DNR. )
posted by tavella at 3:42 PM on January 17, 2018 [7 favorites]
locked-in syndrome != minimally conscious. In fact, nearly entirely opposite. In that case my actual self and mind would be intact. Could I find life satisfactory? If I had a blink-directed computer access, possibly so. And maybe not, but I would be there and able to discuss my own choices.
If my brain is mostly destroyed, then I'm gone. What would be left would no longer be able to actually think enough to make choices or plan, just maybe some minimal reactions to things around me. And I don't want that corpse of who I was causing other people to suffer. Would what was left be actively unhappy? Being unhappy requires a level of understanding; instead you can suffer or not suffer. People at the end of Alzheimer's can be quite peaceful; they no longer even have enough executive function to be confused and thus unhappy. From my experience, their families don't find this an awesome state that should be maintained at all costs.
(And frankly, that's not much of a study. The response group was doubly self selected, in being members of an association for actively supporting locked-in people, and in being the half of those who were willing to answer the survey. On top of that, it was filtered entirely through caregivers, and even then... nearly half of the 'happy' were reported as wanting to be DNR. )
posted by tavella at 3:42 PM on January 17, 2018 [7 favorites]
Aye, but the problem being, tavella, that it can take time to discern whether someone is minimally conscious with their brain “mostly destroyed” or locked in and fully aware of themselves. So when do you make the decision? Do you just jump right in, before a possibly fully-aware person has had the chance to develop the physical ability to express their wishes? Or hold off, give them therapy in the hope they’ll communicate with you, but potentially prolong the suffering of someone who is in fact only ever going to be minimally-conscious? I just don’t see that there’s a simple answer.
You dismiss Tullier’s progress as simply being able to repeat hello and you imply that therefore he’s better off dead, but in fact when they questioned him, he knew exactly who he was and what had happened to him. So what are the criteria for withdrawing medical support? And you say you wouldn’t want to make your loved ones suffer by hanging around, but his fiancée could easily have easily stepped away - for her, letting him go was not the preferable option.
I don’t know this first hand, so defer to anyone who does and thinks I’m talking shite: But based purely on my experience of having been a carer and friend of a once immensely physically accomplished guy who had become quadriplegic - when an unimaginable number of things are stripped away from us, to an extent we would previously have thought unendurable, sometimes what is left becomes more precious, not less. Even if what is left is very slight. Maybe not for everyone, but for some, and probably nobody knows for sure until it happens. And yes, quadriplegia is different from the total paralysis described in this article. But I think the utter loss and the unpredictability of how you would feel in that situation has some commonalities.
Like everything else in life, it’s insanely complicated, and our fear of that doubt and complexity is assuaged by being aggressively certain about what we want for ourselves. But for people living through it, and their families, it seems to me to be much less certain.
posted by penguin pie at 5:02 PM on January 17, 2018 [9 favorites]
You dismiss Tullier’s progress as simply being able to repeat hello and you imply that therefore he’s better off dead, but in fact when they questioned him, he knew exactly who he was and what had happened to him. So what are the criteria for withdrawing medical support? And you say you wouldn’t want to make your loved ones suffer by hanging around, but his fiancée could easily have easily stepped away - for her, letting him go was not the preferable option.
I don’t know this first hand, so defer to anyone who does and thinks I’m talking shite: But based purely on my experience of having been a carer and friend of a once immensely physically accomplished guy who had become quadriplegic - when an unimaginable number of things are stripped away from us, to an extent we would previously have thought unendurable, sometimes what is left becomes more precious, not less. Even if what is left is very slight. Maybe not for everyone, but for some, and probably nobody knows for sure until it happens. And yes, quadriplegia is different from the total paralysis described in this article. But I think the utter loss and the unpredictability of how you would feel in that situation has some commonalities.
Like everything else in life, it’s insanely complicated, and our fear of that doubt and complexity is assuaged by being aggressively certain about what we want for ourselves. But for people living through it, and their families, it seems to me to be much less certain.
posted by penguin pie at 5:02 PM on January 17, 2018 [9 favorites]
I was in the room when the doctors "pulled the plug" (removed oxygen tube) on my grandmother. Like saucysault says, it was fairly quick and peaceful. She was on insane amounts of morphine.
I'm single and don't really trust my family, so who gets to make that decision if I'm unable to?
posted by AFABulous at 5:15 PM on January 17, 2018
I'm single and don't really trust my family, so who gets to make that decision if I'm unable to?
posted by AFABulous at 5:15 PM on January 17, 2018
Again, quadriplegic entirely different from minimally conscious. The actual person and self is still entirely intact, just the machinery that carries them around is messed up. Trying to bring up these not relevant things to claim that I don't actually have any right/ability to make choices about what happens to my body is rather obnoxious.
As for what other people decide that's up to them. Maybe this is exactly the choice Tullier would have made. Maybe spending the rest of her life caring for him will make his fiancee' happy. Her life, her choice. My life, my choice. And I. Would. Rather. Be. Dead.
posted by tavella at 5:16 PM on January 17, 2018 [1 favorite]
As for what other people decide that's up to them. Maybe this is exactly the choice Tullier would have made. Maybe spending the rest of her life caring for him will make his fiancee' happy. Her life, her choice. My life, my choice. And I. Would. Rather. Be. Dead.
posted by tavella at 5:16 PM on January 17, 2018 [1 favorite]
AFABulous I don't know if you were seriously asking but you can designate anyone you trust (a friend?) if you create a living will and health care power of attorney. A good doctor should be willing to explain how those work, or point you to the social worker or whoever who can. Family is easier but it's certainly not the only option.
posted by Wretch729 at 5:30 PM on January 17, 2018
posted by Wretch729 at 5:30 PM on January 17, 2018
And yes, if researchers can come up with consistent and reproducible tests to add to the current array of diagnostic tests, that will be a good thing. People planning their living wills will have another circumstance they can indicate, families can have more clarity on their choices. A few people will be escape being badly misdiagnosed.
But the framing of the story, that there are thousands of people who are just suffering a temporary little issue and turning off life support is terrible and they'll recover with a little work grits me more than a little. Some handful of those might recover to something close to their previous selves, but mostly they are people who are going to end up in nursing homes for life at best. At home with overburdened families trying to provide 24 hour care instead in many cases. And maybe that's what the people involved want, and I salute giving them more information.
But it is not what I want, and it is not what I want my family to do.
posted by tavella at 5:43 PM on January 17, 2018 [2 favorites]
But the framing of the story, that there are thousands of people who are just suffering a temporary little issue and turning off life support is terrible and they'll recover with a little work grits me more than a little. Some handful of those might recover to something close to their previous selves, but mostly they are people who are going to end up in nursing homes for life at best. At home with overburdened families trying to provide 24 hour care instead in many cases. And maybe that's what the people involved want, and I salute giving them more information.
But it is not what I want, and it is not what I want my family to do.
posted by tavella at 5:43 PM on January 17, 2018 [2 favorites]
What's most interesting is not that these people are there. That is entirely unsurprising, given the findings from upwards of ten years ago.
What's interesting is the potential for them to regain their abilities, by such methods as electronic stimulation and chemical stimulation. There has been research putting essentially a pacemaker in a minimally conscious person's brain, which then led to them speaking full sentences. This could be a legitimate avenue, among other biochemical interventions, to make this progressed recovery much more common.
However, if there is no research done on these people now, then 10 years there won't be the potential for many more people to regain consciousness. It's all about the long game.
posted by tooloudinhere at 6:03 PM on January 17, 2018 [1 favorite]
What's interesting is the potential for them to regain their abilities, by such methods as electronic stimulation and chemical stimulation. There has been research putting essentially a pacemaker in a minimally conscious person's brain, which then led to them speaking full sentences. This could be a legitimate avenue, among other biochemical interventions, to make this progressed recovery much more common.
However, if there is no research done on these people now, then 10 years there won't be the potential for many more people to regain consciousness. It's all about the long game.
posted by tooloudinhere at 6:03 PM on January 17, 2018 [1 favorite]
I’m a social worker in a skilled nursing facility. Most of my patients are in short term rehab, typically to get PT and OT after a hospital stay and sometimes for medical monitoring for things such as IV antibiotics or daily wound care. My facility also has a number of long term care residents which is a unit that is more like a traditional nursing home. Most of my long term patients have some sort of dementia, in various levels of progression.
I absolutely love to watch a stroke rehab. It takes a little time but once those neural pathways begin to be recreated then things start happening very quickly. But that doesn’t mean that people get even better enough to talk.
I had a patient who had had a massive stroke. She was alert, and able to sit in a wheelchair, but otherwise she just stared at people walking by. There was no way to measure her cognition to see how she was affected.
I always make a point to stop and talk to residents whether they can answer or not. I can’t remember what I was chattering away at her about but the way she was observing me made my gut instinct ping. I looked her in the eyes and asked, “You’re in there, aren’t you?” And in response I got the tiniest nod from her.
I think about her a lot.
posted by We'll all float on okay at 10:15 PM on January 17, 2018 [10 favorites]
I absolutely love to watch a stroke rehab. It takes a little time but once those neural pathways begin to be recreated then things start happening very quickly. But that doesn’t mean that people get even better enough to talk.
I had a patient who had had a massive stroke. She was alert, and able to sit in a wheelchair, but otherwise she just stared at people walking by. There was no way to measure her cognition to see how she was affected.
I always make a point to stop and talk to residents whether they can answer or not. I can’t remember what I was chattering away at her about but the way she was observing me made my gut instinct ping. I looked her in the eyes and asked, “You’re in there, aren’t you?” And in response I got the tiniest nod from her.
I think about her a lot.
posted by We'll all float on okay at 10:15 PM on January 17, 2018 [10 favorites]
As for someone making health care decisions for you, look for your state’s health care power of attorney form. In Illinois the form doesn’t need a physician’s signature or to be notarized but every state will be different.
If you do not have a power of attorney in place then the medical facility would go through a health care surrogate list. This starts with your closest relative. If you do not trust your family then I encourage you to identify someone you would trust to follow your wishes and creating the power of attorney form. Keep a copy with you and ensure your physician has a copy.
posted by We'll all float on okay at 10:20 PM on January 17, 2018
If you do not have a power of attorney in place then the medical facility would go through a health care surrogate list. This starts with your closest relative. If you do not trust your family then I encourage you to identify someone you would trust to follow your wishes and creating the power of attorney form. Keep a copy with you and ensure your physician has a copy.
posted by We'll all float on okay at 10:20 PM on January 17, 2018
In a world with a finite amount of resources, whether or not one would choose such a life may not be the most important consideration.
posted by she's not there at 8:32 AM on January 18, 2018
posted by she's not there at 8:32 AM on January 18, 2018
« Older Misogyny is collaborative | “It seems really clear to us that this is an... Newer »
This thread has been archived and is closed to new comments
posted by showbiz_liz at 12:12 PM on January 17, 2018 [15 favorites]