Minimally Conscious State
August 9, 2016 4:03 AM   Subscribe

"Untold thousands of patients misdiagnosed as vegetative are actually aware. Theirs is the civil rights fight of our times." By Joseph J. Fins, a professor of medical ethics and a professor of medicine at Weill Cornell Medical College in New York. Previously.
posted by bryon (55 comments total) 19 users marked this as a favorite
 
I EFFING KNEW IT. *shared to FB with dramatic instructions to keep me alive at all costs*
posted by Dressed to Kill at 5:41 AM on August 9, 2016 [2 favorites]


Curiously I had the exact opposite reaction. Trapped in my own mind and unable to interact with the world? That would be hell.
posted by winna at 5:57 AM on August 9, 2016 [98 favorites]


I EFFING KNEW IT. *shared to FB with dramatic instructions to keep me alive at all costs*

PLEASE SEND ME OFF QUICKLY because fuck having to be trapped with my own thoughts for 20 years
posted by Karaage at 6:02 AM on August 9, 2016 [34 favorites]


minimally conscious state...posted at 4 am...checks out...
posted by Zerowensboring at 6:02 AM on August 9, 2016


counterpoint: the use of increasingly sophisticated and intensive techniques to sustain grievously injured people is unethical and can ultimately be barbaric.

Fins is taking the easiest possible position on this issue for an American medical doctor: which is that patients with severe brain damage who are mentally unresponsive should be subject to secondary attempts at treatment over a long time period. But these patients are all mostly alive because of a host of perverse and/or contradictory incentives. IMHO the correct opinion is that we could do a better job of triage for patients in this category and correspondingly should not be s tabilizing and then warehousing as many patients as we do.

5, 10, 15 years in a minimally conscious state is horrific torture and shouldn't be sold to families with the prospect of some miracle drug or treatment... this is exactly the path that led to the current horrific approach to dying and near dying patients used by American medical doctors and justified by ethicists like Fins.
posted by ennui.bz at 6:04 AM on August 9, 2016 [77 favorites]


'The civil rights fight of our time'? Who says things like that? When there s a movement for black lives, even?
posted by eustatic at 6:12 AM on August 9, 2016 [69 favorites]


Is it horrific torture in all cases? Some? A few? I have no idea myself, so I can't subscribe to either treating such cases automatically as torture nor can I find justification for demanding their existence must carry on at all costs either, at least without some greater chance of them regaining something like a normally conscious state where they could express their own interests.

I guess I'm of the opinion that we may not have a great answer for these sorts of cases and we should accept that and proceed with some humility in facing unknowns.
posted by gusottertrout at 6:17 AM on August 9, 2016 [6 favorites]


The idea of a minimally conscious state terrifies me for the same reasons as winna. In the case of the guy mentioned, perhaps there's some hope that those 19 years were just a flip book of images and memories, and perhaps to him, it was only experienced as a few weeks as the brain was running in standby, routing around the damage. Though, as special as his story is, if you roll the dice enough, there surely are people out there in MCS that are far more aware of it.

So, I hope, the situation of "Your son has experienced huge trauma, we expect this to be a decade long recovery during which he might be minimally aware and will never fully recover full motor function" that my parents would kiss me on the forehead, give me a hug and be allowed to let me go.
posted by Static Vagabond at 6:20 AM on August 9, 2016 [22 favorites]


Trapped in my own mind and unable to interact with the world?

this has been my reality for 62 years.
posted by quonsar II: smock fishpants and the temple of foon at 6:29 AM on August 9, 2016 [23 favorites]


If you were to imagine being in Solitary Confinement in a black room for the "rest of your life", wouldn't this be basically your experience in a minimally conscious state. Its just absurd to suggest that there is some moral quandary with sustaining such a life of torture.
posted by mary8nne at 6:34 AM on August 9, 2016 [8 favorites]


To me the question of how much or little consciousness I'd have is almost beside the point. Can I interact with the world? Will I be able to spend time with my family? Can I go outside? Will I be able to do anything for the next decade but lie there and wait for someone to change my diaper or roll me over so I don't get bedsores? No?

Then conscious or unconscious, why are you spending this money to keep me alive, again?
posted by middleclasstool at 6:39 AM on August 9, 2016 [8 favorites]


NOPE.
I say this as someone who just had their father go through this exact thing and watched his mother desperately cling to any minute sign of recognition that her husband wasn't already gone, and still hasn't recovered from that.
I say that as my grandmother lies slowly dying in the hospital right now, only barely acknowledging the outside world.
With more certainty than I've ever had over anything in my entire life.
NOPE.
posted by WeX Majors at 6:44 AM on August 9, 2016 [27 favorites]


<blinkblinkblinkblinkblinkblink>
posted by Dressed to Kill at 6:48 AM on August 9, 2016 [3 favorites]


USaians: Your annual reminder to get Living Wills sorted: gold standard here, free here.

The US healthcare system and your friends/relatives may not know what's best for you.

For the reasons outlined in the debates above, and dozens of others! Have those hard conversations with your next of kin and doctors NOW before it's too late.
posted by lalochezia at 6:54 AM on August 9, 2016 [29 favorites]


CTRL-F "Schiavo"

"While irreversibility was true in her case, and in patients who are permanently vegetative,"

Fears of this being One Of Those Articles assuaged. But only just.

On the one hand, there are hordes of people just like Terri's parents who will cling to articles like this like barnacles -- I don't CARE what the last tests showed, our daughter is ALIVE and responds to us and sings three arias from Carmen when you're not in the room, and if you just do three more scans you'll SEE! -- even when the results are in fact without hope. The resources available for this kind of research and therapy are thin enough that I can see why many doctors and facilities would consider it throwing good money after bad.

On the other hand, middleclasstool's questions a few posts up swing both ways. If the answer to "can I do anything but just lie here" is "no," then I am in full agreement -- but what if the answer is in fact "we don't know?" And not in a "the power of Jesus may swoop down at any moment and heal the patient miraculously" way but in a "he's in a grey area where we can potentially help him slowly reconnect some dots and get some life back -- but it's not a sure thing" way?

And how many families, spouses and children can truly accept that their loved one is in Column A and not in Column B?
posted by delfin at 6:58 AM on August 9, 2016 [3 favorites]


Without a meaningful diagnostic protocol beyond "We think there's a correlation between sensory input and fMRI activity" this is just an excuse to pretend that any particular vegetative state patient is going to wake up any day now.
posted by Pope Guilty at 7:01 AM on August 9, 2016 [4 favorites]


these patients are all mostly alive because of a host of perverse and/or contradictory incentives.

same
posted by Greg Nog at 7:03 AM on August 9, 2016 [26 favorites]


Yeah, this is my worst nightmare. Is there a pithy phrase that encapsulates the spirit of "do not maintain me as a living corpse man entombed in my own decaying body", as with "do not resuscitate" or "no heroic measures"? Might be time for a new tattoo.
posted by rodlymight at 7:11 AM on August 9, 2016 [3 favorites]


This seems like a good time to remind people that any time is a good time to think about drawing up an advance healthcare directive, living will, and DNR that are appropriate for your state or local jurisdiction, and to set an alarm for a year from now to update it if necessary. Since I was like 12, I've been that morbid kid who's convince they're going to die at any given moment, and I have a perverse security in knowing that I've got some kind of handle on how my last mortal moments will go.

So whether you're feeling thrown off balance by the thought of being trapped in a non-responsive flesh prison, or horrified by the thought of your living mind being turned off as you struggle to make your body show signs of awareness, take a quick moment to download some forms, sign them, give copies to representatives, and rest slightly easier knowing that you can alway update those forms to reflect changes in your state of mind. Remember you can always start simple and add to it as you need. (IANYL, and your local jurisdiction may have laws that affect how you carry out your mortality planning, so consult with a qualified and knowledgeable professional if in doubt)
posted by wakannai at 7:14 AM on August 9, 2016 [4 favorites]


A legal health directive would likely help your caretakers make better decisions than a tattoo would.
posted by Karaage at 7:15 AM on August 9, 2016 [2 favorites]


This is horrifying and I don't know how to handle the possibilities it raises until someone finds a way to communicate with the person in the MCS and determine what he or she wants.

On the other hand, Can brainwaves be detected in lime Jello?
posted by Mchelly at 7:16 AM on August 9, 2016 [2 favorites]


A legal health directive would likely help your caretakers make better decisions than a tattoo would.

That's crazy talk. He's a lawyer, boys! Get him!
posted by thelonius at 7:16 AM on August 9, 2016 [2 favorites]


Yeah, if I'm minimally conscious, unable to interact with the world, and stuck in my body for the foreseeable future, just pull the fucking plug. That is not living.
posted by SansPoint at 7:16 AM on August 9, 2016 [1 favorite]


This makes me so angry.

First off, he offers a series of anecdotes, with little to no evidence that a significant percentage of people in a vegetative state are actually "minimally conscious". Next, he glazes over what kind of life these folks might live, even if they do have some functional recovery, touching only briefly on one person's recovered ability to 'eat by mouth' with 'improved limb control'. Finally, he doesn't make any distinction of who might be able to have neurological recovery, ignoring the implications of his call to keep more vegetative patients alive, when the reality is that the vast majority of those patients are old, too old to ever have even a small chance at any meaningful neurologic recovery.

I am interested in the ethical questions about care for people who are severely neurologically impaired, and there are disability rights activists, writers, and philosophers who are doing important work on this. Their voices should be elevated.

And there is a very real crisis of ethics in how poorly the US cares for people who have permanent disabilities. The nursing home system is a horror, and the lack of funding for good home nursing care, respite care for families, and quality of life interventions for beadbound people is criminal.

There's a terrible irony in our endless quest to keep more people alive, longer, while simultaneously showing a complete absence of interest in what kind of lives people lead after they leave the ICU.

But this guy seems to have no sense of the meaning of what he is saying. Even in a better world, few people will spell out such a detailed advanced directive that we can know precisely how long they'd want to be kept alive in every possible situation. Our healthcare providers need the ability to call that someone does not have a likely potential for meaningful recovery. And if anything, we should move to a default DNR order for folks in a vegetative state.

Having spent a fair amount of time both in ICUs and nursing homes, I am 100% certain that I want to die before I am intervened upon to stay alive in a vegetative, or 'minimally conscious' state.
posted by latkes at 7:26 AM on August 9, 2016 [33 favorites]


" If the answer to "can I do anything but just lie here" is "no," then I am in full agreement.

Surely you're not saying people with full body paralysis or who are bedbound can't have meaningful existence? I'm assuming your not but just wanted to clarify. I understand what people are saying when the issue is that the person may or may not have any awareness about people around them and can't express anything at all- but plenty of people need assistance with bathing and are bedbound and may not be able to speak but have some awareness of people around them.

I would say there's a wide range of levels of consciousness a person can have while bedbound and unable to move significantly- some of the technology we have at present might even be able to provide the possibility for arm movement or speech by using brainwaves.

I think the most terrifying thing is the inability to communicate with the person to know what they want. Some people might want to be able to stay at least for some time for a family member who needs them. I am guessing that when people say "can't do anything" they mean unable to open eyes or express or communicate which is a very different state than just being bed bound or dealing with paralysis.

I think many who can express themselves while dealing with paralysis have said they have found meaning (thought I would believe if plenty didn't feel that way) and I don't like conflating being unable to move with innately meaningless life or unworthy of money spent to care and sustain life. I'm hoping these are considered separate conditions that being completely unresponsive and unable to communicate. I just don't want the assumed meaninglessness of bed bound life to carry over to peoples perceptions about the lives of people with disabilities which can range greatly.

I think this is a really hard issue personally.
posted by xarnop at 7:29 AM on August 9, 2016 [7 favorites]


Definitely if this horrifies you get a DNR on file. I was getting my advance health directive before some surgery last year and joked about a DNR tattoo. I was told that the staff would ignore any such because they couldn't know if it was the last decision about it I'd made and that the only thing they would use would be a notarized advance health directive on file at the hospital.
posted by winna at 7:30 AM on August 9, 2016 [3 favorites]


I'm trying to imagine an MCS existence. Perhaps it's like those first few seconds of coming out of general anesthesia. Vague sensation and awareness but no cognition or sense of self, only you never wake up or recover. Not sure if that would be preferable to simply no longer existing or if there would be enough of an "I" there to even care one way or the other...
posted by jim in austin at 7:32 AM on August 9, 2016 [1 favorite]


I like this really simple to use advanced directive, legal in California (and Pennsylvania). We should all have advanced directives, but even more important, talk about your wishes with your partner, your parents, and your adult children. Make your intent very clear. If anything, filling out a simple advanced directive like the one linked above with your loved ones is an opportunity to explicitly talk about this topic.
posted by latkes at 7:34 AM on August 9, 2016 [5 favorites]


This is as good a reminder as any to grant medical power of attorney to someone who you trust to enact your preferences.
posted by tobascodagama at 7:47 AM on August 9, 2016 [2 favorites]


For those interested, CBC's Ideas did a program dedicated to ethical issues around MCS patients recently. It mentions Fins, but also gives a number of other views including ones from disability rights activists.

Also, I get that MCS sounds like a nightmare, but can we get past the "pull the plug if that happens to me" responses and maybe consider what it means to care for patients who are stuck in MCS? Yes, advanced directives are important, but if talking about those drowns out discussions of how to best care for folks who are in this situation (which is what the the article is about) then that seems pretty problematic.
posted by nangua at 7:53 AM on August 9, 2016 [2 favorites]


A legal health directive would likely help your caretakers make better decisions than a tattoo would.

I was thinking more like 'in addition to', in case there was any question about my resolve on the matter. It may be less of an issue here anyway, what with our death panels and all.
posted by rodlymight at 7:56 AM on August 9, 2016


First off, he offers a series of anecdotes, with little to no evidence that a significant percentage of people in a vegetative state are actually "minimally conscious"

Is there a particular issue that you take with the study he cited regarding MCS prevalence?
posted by Jpfed at 8:13 AM on August 9, 2016


Invisibilia has a great story about a man who, for years, was thought to be in a vegetative state, but was actually conscious for much of that period. It talks about what it was like for him being trapped in his mind with his thoughts, and the strategies he used to deal. There's also this:
MILLER: Though there was one thought he'd allow himself to engage and savor.

MARTIN PISTORIUS: I prayed and wished with all my might to die.

MILLER: So that, my friend, was his experience of letting thoughts go.

(SOUNDBITE OF CLOCK TICKING)

MILLER: Though, occasionally there were these things...

(SOUNDBITE OF TV SHOW, "BARNEY AND FRIENDS")

UNIDENTIFIED ACTOR: (As Barney) You can always count on having a fun day when you spend it with the people you love.

MILLER: ...These things that provided a kind of motivation, like "Barney."

(SOUNDBITE OF TV SHOW, "BARNEY AND FRIENDS")

UNIDENTIFIED ACTOR: (As Barney, singing) I love you. You love me.

MARTIN PISTORIUS: I cannot even express to you how much I hated Barney.

(SOUNDBITE OF TV SHOW, "BARNEY AND FRIENDS")

UNIDENTIFIED ACTOR: (As Barney, singing) We're a happy family.

MILLER: See, since all the world thought that Martin was basically a vegetable, they would leave him propped up in front of the TV watching "Barney" reruns hour after hour, episode after episode, day after day.
posted by jjwiseman at 8:39 AM on August 9, 2016 [15 favorites]


Surely you're not saying people with full body paralysis or who are bedbound can't have meaningful existence? I'm assuming your not but just wanted to clarify. I understand what people are saying when the issue is that the person may or may not have any awareness about people around them and can't express anything at all- but plenty of people need assistance with bathing and are bedbound and may not be able to speak but have some awareness of people around them.

And therein lies the dilemma. Paralysis and loss of speech and motor function do not imply loss of humanity at all, and their wishes (however they can be communicated) must be respected, even at as primal a level as "keep me going" or "pull my plug." But if no communication is possible and there are no directives available, then what? Someone who is zero-higher-brain vegetative and someone who is locked-in and incommunicative but is thinking may appear _identical_ to caretakers and family, and if medical science can help to tell the difference, more power to 'em.
posted by delfin at 8:45 AM on August 9, 2016 [1 favorite]


This is why I spend every minute of every day holding a very sensitive dead man's switch.
posted by It's Raining Florence Henderson at 8:53 AM on August 9, 2016 [4 favorites]


Invisibilia has a great story about a man who, for years, was thought to be in a vegetative state, but was actually conscious for much of that period.

Yeah, Pistorius' book is titled Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body. It was a pretty fascinating, and at times heartbreaking, read. I recommend it.
posted by bologna on wry at 8:57 AM on August 9, 2016 [2 favorites]


If you were to imagine being in Solitary Confinement in a black room for the "rest of your life", wouldn't this be basically your experience in a minimally conscious state.

the examples in the essay were traumatic brain injury in a car wreck and brain injury from oxygen loss due to a opiate overdose. in both cases you are talking about severe irreversible brain damage. thanks in part to or war in Iraq, we have gotten very good at keeping people with traumatic brain injury alive, but "minimally conscious" in this case almost certainly means extremely severe damage with a permanently "low" mental state ie. the big baby or worse.

for an ethicist, his whole approach send grossly unethical, particularly his suggestion that miracle drugs ie. Ambien could help neural repair, which suggests recovery but for almost all of these patients will not bring the patient back to their families in any form resembling who they were before.

But grandstanding over civil rights for the minimally conscious is just despicable.
posted by ennui.bz at 9:08 AM on August 9, 2016 [4 favorites]


also, in case someone thinks "despicable" is to strong a word... Fins tries to play the "both sides are wrong" wrt the Schiavo but, regardless of how you may feel about her case, what the whole incident showed was that pretty much the whole country recoiled in horror at the idea that this sort of medical decision could be decided in the supreme court and for good reason.

what framing "minimally conscious" as a civil rights issue means is "let a thousand Schiavo cases bloom" as how else are constitutional issues resolved?
posted by ennui.bz at 9:46 AM on August 9, 2016 [3 favorites]


Someday hopefully we will develop ways for MCS people to communicate with the world. I wish he had emphasized the need for that kind of research.
posted by SyraCarol at 9:49 AM on August 9, 2016 [1 favorite]


I didn't see any discussion in the article regarding cost. Who is supposed to pay for a decade of vegetative care, plus all the diagnostics to stay on top of possible cognitive changes.

The reality is that costs matter. We already do ration care, just not well.

Cost is an ethical concern.

Money spent on these kinds of patients would maybe be better spent elsewhere. Even in the best cases cited in the article, these people will require extensive and expensive medical care for the rest of their lives.
posted by yesster at 9:54 AM on August 9, 2016 [9 favorites]


I have no mouth and yet I must give a TED talk.
posted by dances_with_sneetches at 10:40 AM on August 9, 2016 [6 favorites]


MILLER: See, since all the world thought that Martin was basically a vegetable, they would leave him propped up in front of the TV watching "Barney" reruns hour after hour, episode after episode, day after day.

Ok I think we can all agree that we'd rather die than be subjected to that.
posted by bq at 10:48 AM on August 9, 2016 [8 favorites]


Maybe there could be something akin to a living will, except for what shows and movies you want to be watching in that state.
posted by Apocryphon at 10:54 AM on August 9, 2016 [6 favorites]


Maybe there could be something akin to a living will, except for what shows and movies you want to be watching in that state.

Tiny Kittens livestream, please.

I have no mouth and yet I must give a TED talk.

/dies
posted by Existential Dread at 11:56 AM on August 9, 2016 [5 favorites]


> Maybe there could be something akin to a living will, except for what shows and movies you want to be watching in that state.

Finally, I can get through my backlog.

Seriously though, just on the off chance they can watch you'd think we'd be putting something interesting on for people. More of an effort to do that alone would make the whole situation significantly less horrifying to me.
posted by lucidium at 12:13 PM on August 9, 2016 [2 favorites]


I guess the Homeland scriptwriters have just been handed their way out of the "Quinn in minimally conscious state" quandary ahead of the next season.
posted by penguin pie at 1:23 PM on August 9, 2016 [1 favorite]


PLEASE SEND ME OFF QUICKLY because fuck having to be trapped with my own thoughts for 20 years

But what if they left a radio on NPR in the room?

That's my plan if anyone I care about is ever diagnosed as being in a vegetative state. There are some good shows on NPR.
posted by Jacqueline at 1:29 PM on August 9, 2016 [4 favorites]


I've sometimes worried that the current enthusiasm for assisted suicide may soften people up for far less acceptable things like involuntary euthanasia; I'm not feeling reassured.
posted by Segundus at 1:35 PM on August 9, 2016 [1 favorite]


Unattended radios playing A Prairie Home Companion would be too close to assisted suicide for most states.
posted by delfin at 2:32 PM on August 9, 2016 [8 favorites]


Very occasionally I end up in a sleep (dream?) state where I know that that I am asleep and want to awake but cannot move or talk--silently screaming for someone to wake me. Perhaps other have had this experience. It is awful, and it is what I imagine it is like for people described here.

No doubt that sleep state only lasts a few seconds or maybe a few minutes for me. Lasting for years or decades? Please let me die.
posted by haiku warrior at 5:30 PM on August 9, 2016 [1 favorite]


That's sleep paralysis, haiku warrior. I've only had it happen once, but damn was it alarming.
posted by tavella at 5:35 PM on August 9, 2016 [1 favorite]


Unattended radios playing A Prairie Home Companion would be too close to assisted suicide for most states.

I have no Powdermilk Biscuits, and I must scream.
posted by It's Raining Florence Henderson at 5:36 PM on August 9, 2016 [2 favorites]


The whole idea of this nauseates me and makes me even more certain that there is to be no heroic anything for me. So you can use tennis or house to answer yes or no questions with one patient, but there is no way to even know what the right questions are. A combination of mental issues means that for me, sometimes being touched is very, very important, and sometimes not being touched is very, very important. Not even in a sexual way. The idea that I would be slowly going mad from lack of physical comfort and too much scheduled (regardless of my wishes) physical therapy because they are too busy questioning me about thirst or what the name of the president is...I can't even finish this sentence.

And if it is a civil rights issue does this include sexual agency? If you can still feel things, is it okay for doctors or family to try to find out if you want to have some sexual stimulation? Take this woman. She claims that (by guided communication) her patient told her that he wanted and consented to a sexual relationship. I would be concerned about the people making decisions of this nature. Or the gay child of an evangelical who decides to use the decade of healing to "fix" his sexuality.

But this is all my idea of my own worst case scenario. I can't not project myself into the thought.
posted by monkeyscouch at 8:45 PM on August 9, 2016 [3 favorites]


Tons of anecdotes, little data.

You know who else could probably tell the difference between my voice and random English spoken backwards? My dog. You know who I wouldn't consider conscious? My dog.

The deep irony of these discussions is that, at least for some people, it's making them less likely to accept moderate medical interventions in order to avoid dealing with these sorts of moral quagmires. Would I be willing to go on a ventilator or life support for a few days? Yes. Would I be willing to do it, knowing full well that, if I don't recover, we'll waste tons of resources preserving my corpse, in the vague hope my brain might restore itself? No.

Sometimes a refusal to make decisions means that others are stuck making them for you.
posted by steady-state strawberry at 8:51 PM on August 9, 2016 [2 favorites]


I can't help but feel something is being lost in this discussion. I mean, yeah, I get it most people here don't want to end up in this state as they project it as being hellish in some way. I also would not like to end up in a minimally conscious state, but I also wouldn't want to develop Alzheimers, a severe mental illness, become a quadriplegic and on and on. I don't want these things in large part because I'm trying to project my current state of well being into a different state I'm not inwardly experienced with and the comparison obviously isn't going to favor enormous disability.

Since I can't directly experience the state myself, I might use observations about people I see in that state, but those are still entirely informed by the same comparison to my own state of well being and fears of what it might be like to be in a state other than this one. When you're young, even the thought of being elderly can seem frightening by such measures.

My mother had Alzheimers, and in its advanced state it could be argued that the person with the disease may be even less of a self aware conscious entity than being in a minimally conscious state. My father spent his life savings personally taking care of my mother through the last decade of her life despite having serious medical issues of his own. Once my mother died, he became deeply depressed and he died short while later.

What I took from that is there isn't any easy answer to these kinds of questions. I mean, yes, get a living will and put your preferences into writing. I'm all for that. But the rest of it isn't so easy to talk about once you get over projecting yourself into the state. Should my mother been allowed to continue on so long when she was barely recognizable as the person she once was? What would her preference have been in those later stages? Should my father's interests matter? Does his added life span count for anything? It does to me, but I can't fully weigh the counter costs.

Personally, I'm not all that worried about ending up in a minimally conscious state, I don't want it to happen, but it isn't something I fear like some others here seem to. I don't know at all what it would be like, but I like my consciousness and I'm not in any hurry to have it end if it is at all recognizable to me. Maybe I'd regret saying that were I in such a state, maybe not. No way to know. What I do know however is that I can't project my beliefs as universal and because of that thinking about the best way to deal with these situations becomes even more difficult.

What seems to be lost in all the projecting and in the imperfections of the article, no this isn't the biggest civil rights issue of our time, is that the base concern is significant. What is the best way to treat these patients to ensure they aren't suffering unduly? If you are going to respect patient's wishes for euthanasia, how and when will that come into play? Is removing feeding tubes really any more humane than putting a bullet in the patients head, for example? I'm not sure I'd rather starve to death than go out quickly which makes me suspect the feeding tube solution is more about us than the patient. (Not that I'm actually advocating shooting people.)

If a minimally conscious state is deemed open to euthanasia, what about Alzheimers or other severe illnesses? If there is no living will and no close relatives who decides what happens? Cost benefit analysis? Not sure I'm so keen on my life being judged less worth preserving than that of a wealthier person because of our bank rolls.

Regardless of their framing, the issues the article brings up are real and important, not just for how we treat people in minimally conscious states, but for how we deal with people who may not be able to take care of themselves or express their interests or desires.
posted by gusottertrout at 1:24 AM on August 10, 2016 [5 favorites]


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