Feb 24 2011
Locked-In and Happy
A recently published survey of patients suffering from locked-in syndrome finds that many of them (47/91) report being happy. Only 18 in the same group reported being unhappy, and only 7% reported suicidal thoughts. Of note, there were all chronic patients, and longer duration of locked-in syndromes (LIS) correlated with greater happiness.
Locked-in syndrome results from brain damage, from either trauma, stroke, or similar event, with damage at the level of the brainstem. This results in almost complete paralysis – patients cannot move their arms and legs and cannot speak but they can partially move their eyes. Many learn to communicate by blinking in a yes/no fashion.
From the outside this certainly seems like a horrific situation. The ability to communicate, socialize, and engage in anything recreational is severely limited, and indeed patients with LIS do complain of these things as limiting their happiness. But this study suggests that we should not just assume what people with chronic LIS are feeling.
The study itself was a self-reporting survey, and so has some limitations. Family members were often present during the questioning, and this could certainly affect the responses – patients may not wanted to have their family members know how unhappy they are. Also, only 91 out of 168 patients invited responded to the survey. That’s a small percentage, and allows for a significant self-selection bias. Perhaps most of the people who did not respond were so severely depressed they were too apathetic to participate. So this survey is certainly not the last word on the question of happiness in LIS patients.
But still 47 patients reported being happy. It might be surprising that anyone can find happiness in such a situation. Study author, Steven Laureys (you may remember him from other blog posts I have written on coma) commented:
“That some locked-in syndrome patients self-report happiness may suggest they have succeeded in adapting to their condition of extreme disability.”
This makes sense in light of previous research that shows that people are remarkably adaptive. We tend to anchor our perception of happiness to our current situation. This is good and bad. It means that when good things happen to us they make us happy, but only for a while. Then we adapt to our new improved situation, which becomes our new baseline, and we judge our happiness based upon that. Good fortune does not make us perpetually happy. This might also explain why people who are in a relatively good situation compared to us seem ungrateful for their good fortune.
At the same time we adapt to the bad or even horrible things that happen to us. Hardship can become a norm, and we can find happiness even in situations that most people would find oppressive or depressing.
In other words – we tend to overestimate our happiness or unhappiness in relatively better or worse situations respectively. We think that if we win the lottery we will be perpetually happy, but this is not what happens. Or if something terrible happened to us (we get divorced, death of a loved-one, professional failure, whatever) that we will be perpetually miserable. But people adapt and persevere.
This phenomenon might also explain how people find themselves in abusive situations. We can adapt bit by bit to the slowly increasing abuse, until we find ourselves in a situation we never would have imagined we would tolerate. From the outside it then seems unbelievable that someone would put up with such abuse, and we might naively think that we would never tolerate such a situation.
This survey suggests that some people can adapt to even the most extreme disability and reach an emotional equilibrium to the point where they can describe themselves as happy. Laureys argues that this study should make us more cautious before considering euthanasia for patients with LIS (this is not so much an issue in the US, but is in some European countries). This is reasonable (but again this survey should not be considered definitive). At least it argues for waiting until enough time has passed. Patients may think that their initial misery will last forever, but this study suggests that it many cases it won’t.
Ultimately this study supports other research which indicates that humans are a highly emotionally adaptive species – for good and for ill.
47 Responses to “Locked-In and Happy”
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Great Post, very enlightening, thanks. In my humble opinion the reason why we are able to adapt and preserve after the death of a loved one is because deep down we know that Death is not the End. Death is simply the movement of one plane of existence to another where we will be embraced by the light and meet all our loved ones again. The purpose of our existence on earth is to be kind and compassionate to each other so we can grow and learn. Life is forever, Death is just a horizon.
Love and Peace
SA – You should not casually assume what other people believe deep down. Atheists really believe there is no afterlife – really.
@SA
I find your username offensive (imagine if I called myself a christian in my screenname and posted blasphemies in every post) and your prostelytizing doubly so. Get stuffed.
Sorry for offending you.
Love and Peace
Keep your false piety and empty apologies and just shut up.
I was not apologizing to you mikerattlesnake, I was apologizing to Dr.Novella. If he does not like my comments on his blog, that’s fine. But you mikerattlesnake I really don’t give a damn what you think.
I choose the name Skeptical Atheist because I am skeptical about the Atheistic Dogma that Death is the End.
You should have gone with Skeptical Grammarian.
SA seems to me a clear case of trolling. The idea that anyone who considers themselves either skeptical or athiest would post such a response is rather outlandish.
I read the complete BMJ article. Extremely informative on patients’ attitudes and types of treatment. Interesting note about permissible physician-assisted suicide in the U.S. states of Oregon, Washington, and Montana. Apparently there are Death and Dignity Acts in Washington and Oregon which allow physician assisted suicide as a medical treatment. The overwhelming majority of U.S. state laws type this action as a criminal felony or act of manslaughter.
“I choose the name Skeptical Atheist because I am skeptical about the Atheistic Dogma that Death is the End”
No you didn’t. You know that ‘skeptical atheist’ implies to the reader that you are an atheist (and it’s not even ambiguous), and you want to get their attention somehow. That’s highly intellectually dishonest and even you know it.
If you want to show that you are not intellectually dishonest, try changing that to a semantically correct ‘Skeptical of Atheism’, ‘Skeptical of Atheists’, ‘Atheism Skepticism’, or something to that effect.
And before you tell me atheists get angry with ease: imagine if I kept getting into christian forums with the username ‘Logical Christian’, using logic to dismantle Christian arguments, and saying I chose that name specifically because logically, Christianity is dogma and wishful thinking.
Damn right everyone there should get angry at me, because I would be full of shit (on the choice and semantics of the username that is).
And because the intewebs can’t properly convey tone and emotions, I’ll send some Love and Peace to you too
I agree with petrucio. SA – you have been trolling here ad nauseum for a few days now. I also find your moniker offensive in the same way – except that I just don’t particularly care. However, if YOU do actually care about the thoughts and experiences of others, and not just foisting your religious inanity on a group of skeptics and atheists because you think that is your way of doing “works” or saving souls or something, then you should take that into account.
As for your first comment – it epitomizes the amazingly broad stroke of the many small-minded assumptions you have been continually making on your trollfest here. I do not believe in an afterlife. At all. In fact, it is one the things I am quite certain does NOT exist. And you know what? THAT brings me amazing comfort. I had long conversations with a roommate (and still friend) back in my undergrad days. He asserted that he gained comfort from belief in an afterlife. I still feel that I would be terrified constantly if there were one. Why you ask? Simple.
How do I know that I am doing exactly the right things to get into heaven? How do I KNOW I didn’t screw up on tiny but vital detail and I will now spend ETERNITY in damnation? And even if I were supremely confident that I personally did follow every nuance necessary, I could not say the same for all of my friends and family. If my [mother, sister, lover, wife, friend] died, and I believed in an afterlife, I would be CONSTANTLY worrying that they were in HELL and hadn’t gotten into heaven. Feeling confident that there is no afterlife gives me comfort because I can reflect on my own life and be happy I have lived a good one, knowing I wont have to face some mystical final arbiter. The same with the deaths of those I care for – I can reflect on their lives and their impact HERE on earth – and not be concerned about the fate they might suffer.
But then again, the fact that I would think such things and be concerned about such things is a symptom of my SKEPTICAL and LOGICAL thinking. These are incompatible with faith based thinkery – as is critical thinking. Which is why you are capable of such broadly generalizing though provincial and specious commentary.
And no, I care not one way or another for your moniker. But know that you were it here with shame.
I would like to read on this blog a rational discussion of the effects on the nervous system of a diseased body of physician- prescribed lethal doses versus the effects on the diseased human body of food and/or fluids withdrawal. The biological impact of these factors should be part of the balance equation in the right to die issue.
Would a locked-in patient die quick and happy if staff refused to remove bacteria or fecal matter accumulated on his human body? Would a locked-in patient die happily ever after if feeding tubes or catheters were never cleaned?
This post reminded me of the Fiona Apple song Extraordinary Machine:
“I’m good at being uncomfortable, so
I can’t stop changing all the time…
he’s no good at being uncomfortable, so
He can’t stop staying exactly the same.”
I wonder if our ability to adapt emotionally is the key to happiness. Or at least self reported happiness.
I have no idea how one would test that idea but it struck me during this post.
PS – Stop feeding the troll, folks. You feed them and they stay.
nybgrus you write a lot on nonsense. I am not a fundamental christian, I belong to a liberal church. But I will not sit silently while you say total rubbish like ‘the fact that I would think such things and be concerned about such things is a symptom of my SKEPTICAL and LOGICAL thinking. These are incompatible with faith based thinkery – as is critical thinking. Which is why you are capable of such broadly generalizing though provincial and specious commentary’.
I get the impression that in your mind, people with ‘Faith Based Thinkery’ can’t think critically. Why don’t you say that to Stephen Hawkings former Phd student the great Physicist Don Page who is an Evangelical Christian and a Black Hole expert. Yes he is an Evangelical Christian. So please do a little research before you go babbling.
Most Doctors in my country ( America) are Christians, are you telling me they can’t think critically? The vast majority of people in the world believe in God and an afterlife, I don’t see them falling apart, look at countries like Japan or Singapore, I am pretty sure they are not Atheistic countries but they seem to be doing pretty well.
nybgrus you don’t have any place in Science, you lack the ability to separate your emotions from your thinking and who cares if you find the idea that Death is the end comforting? You seem to have got the whole universe worked out.
nybgrus you write a lot on nonsense. I am not a fundamental christian, I belong to a liberal church. But I will not sit silently while you say total rubbish like ‘the fact that I would think such things and be concerned about such things is a symptom of my SKEPTICAL and LOGICAL thinking. These are incompatible with faith based thinkery – as is critical thinking. Which is why you are capable of such broadly generalizing though provincial and specious commentary’.
I get the impression that in your mind, people with ‘Faith Based Thinkery’ can’t think critically. Why don’t you say that to Stephen Hawkings former Phd student the great Physicist Don Page who is an Evangelical Christian and a Black Hole expert. Yes he is an Evangelical Christian. So please do a little research before you go babbling.
Most Doctors in my country ( America) are Christians, are you telling me they can’t think critically? The vast majority of people in the world believe in God and an afterlife, I don’t see them falling apart, look at countries like Japan or Singapore, I am pretty sure they are not Atheistic countries but they seem to be doing pretty well.
Learn to be objective in your evaluations nybgrus, you are an angry, agenda based, and biased individual, you are so full of yourself that you feel it is your duty to teach all of us critical thinking.
He’s just having a conversation with himself… it’s like we’re not even here.
About 70 percent of Japanese profess no religious membership, according to Johnstone (1993:323), 84% of the Japanese claim no personal religion. And according to Demerath (2001:138), 64% do not believe in God, and 55% do not believe in Buddha.
http://en.wikipedia.org/wiki/Religion_in_Japan
hi nybgrus-
It was interesting to me that the comfort you gain from your belief that life ends with physical death, was from the fear of being judged negatively and having you or your loved ones end up in some kind of hell. It reminds me of someone elses comment here somewhere (sorry – don’t remember who – it was on one of the morals pages I think) that the Dali Lama (Buddhist) is an atheist. And above, Dr. Novella says that atheists believe there is no afterlife.
The Dali Lama may be an atheist, be he definitely believes in an afterlife because he believes in reincarnation. And why does disbelief in god/gods require disbelief in an afterlife? And why does the necessitated afterlife of a theist have to have a heaven and a hell and a god who sits in judgment? I think that idea of God/heaven/hell is the Judeo-Christian version of afterlife. There are those (Dali Lama) who believe that the “soul” or consciousness, or whatever, continues as a type of energy which retains the mental/emotional “mind” or “heart” of the individual, but becomes a part of a larger energy. A sort of pantheistic heaven, if you will. Myself, I cannot be comforted by the idea of reincarnation, because like the possible hell of an afterlife you might fear, I fear a possible hell of a reincarnation!
cheers
petrucio, so what’s your point? the Japanese practice a kind of ancient spiritual tradition that is mixed with Buddhism. Even if many of them don’t believe in Buddha they still believe in the continuation of consciousness and that nature is intelligent.
I can assure you that most of the people who say they don’t believe in God in polls still have a believe in some sort of Cosmic Consciousness and Sacredness of Nature.
Atheists love to use European nations as model Atheist countries, Atheists fail to admit that many people in those lovely countries still do believe in nature spirits and an afterlife.
You Atheists love to target fundamental religions because it makes your case stronger. Most people don’t subscribe to the teachings of Pastor Terry Jones.
America is largely a Christian Nation and that didn’t stop us from sending people to the moon and from being the most Scientifically advanced country in the world.
Conclusion: Religion and Science can exist side by side in perfect harmony. They are not enemies. In fact Science is beginning to show that the ancients were in fact correct. There is a God ( the force of the Universe) and there is an afterlife because there is no such thing as Death. Consciousness is eternal. Death is just a movement from one level of existence to another where we will be embraced by the light and meet all our loved ones again. There is no hell. The Universe is loving and does not punish us. We are here to grow into oneness.
Amen
You were right SARA – I’m sorry. I’ve learned my lesson.
indeed. let the troll talk to his imaginary friends
America is largely a Christian Nation and that didn’t stop us from sending people to the moon and from being the most Scientifically advanced country in the world.
And rapidly falling behind other nations in part due to the fundamentalist christian opposition to science (Bush anyone?)
Conclusion: Religion and Science can exist side by side in perfect harmony. They are not enemies.
So you have no idea about science and how faith and empericism cannot co exist. Ask Gallileo how harmoniously religion and science co exist
In fact Science is beginning to show that the ancients were in fact correct.
citation??? Otherwise blind assertion.
There is a God ( the force of the Universe) and there is an afterlife because there is no such thing as Death.
Again EVIDENCE – F=MA Is that the force you are discussing???
Consciousness is eternal.
Define consciousness – and any actual EVIDENCE
Death is just a movement from one level of existence to another where we will be embraced by the light and meet all our loved ones again.
PROOF??
There is no hell. The Universe is loving and does not punish us. We are here to grow into oneness.
The universe is an expanding cone of space/time – do you want to explain how that relates to the chemical and electrical phenomena in the human brain that we describe as love?
Bah hippy troll
-Atheists love to use European nations as model Atheist countries, Atheists fail to admit that many people in those lovely countries still do believe in nature spirits and an afterlife.-
…and pixies.
and frankly if my doctor professed that he believed in pixies, he would no longer be my doctor.
SA can call himself whatever he wants, like a child playing at doctors and nurses.
I can also totally guarantee that the very LAST thing i want to do is get stuck in eternity with my “loved ones”. Not to mention the article’s point that happiness will always be fleeting. Humans couldn’t handle heaven. We even have a phrase for what it represents. “A gilded cage”.
“The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt.” – Bertrand
No SA, having lived in Japan for twelve years, I can tell you that Petrucio’s portrayal of religious life here (or lack thereof) is closer to the mark than yours.
People here keep little family altars to their deceased relatives because it’s a way of honoring their memory. They go to shrines on New Year’s and at other holidays because that’s what you do. (They also have Christian weddings and Buddhist funerals.) Many Japanese have even told me, and I quote, “Shinto is not a religion.” It’s a way of getting a little break from modern life, taking a few deep breaths, getting a little glimpse of the beauty in the world. Nothing that an American would recognize as religion–the noisy moralizing, the obsessing about sin, the pompous displays of virtue–is in evidence here. It’s wonderful. You want a country that functions as morally as any other (check the crime stats) without any real religion at all? Look no further.
It’s amazing to me that someone like SA can’t read their own ideas back and see them for what they are: wish-fulfillment fantasy. Seriously? The universe loves you and you get to hang around with all your loved ones forever? How much ice cream do you get?
SO MUCH?
Yes we, as a fairly religious nation, have accomplished a lot of things, but clearly one’s beliefs can LIMIT their ability to think critically. Yes, outside of the areas of one’s faith one can perform basic scientific functions, but the religious worldview as a whole is not scientific.
mikerattlesnakeon 24 Feb 2011 at 9:57 am
“You should have gone with Skeptical Grammarian.”
- haha Great! Made my day, thanks!
mikerattlesnake: hit it on the head brohim. I always hate these pleas of “see! we managed to get this far and we are [X] therefore [X] must be compatible with and support our progress” While sometimes this IS the case, most of the time it is not (especially in the case of religion). The correct way to say it is “We managed to get this far IN SPITE OF [X] which is amazing. Now, if we can do away with or properly manage [X] we will get EVEN FARTHER” – especially when [X] is religion
Guys guys guys…
If you stop justifying SA’s posts with responses, he’ll be forced to come up with an even more hilarious username in order to get people’s attention.
rulesandwisdomon 25 Feb 2011 at 8:40 pm
Guys guys guys…
If you stop justifying SA’s posts with responses, he’ll be forced to come up with an even more hilarious username in order to get people’s attention.
Aw Aw…. But it such fun…. But Oh Alright…
You make too many assumptions, how do you know I am a guy? What if I am actually a disembodied spirit that is trying to help Atheists to bring them back to the loving light and help them realize that Death is not the end, it is merely the movement from plane of existence to another, where you will meet all your loved ones again.
SA, The English language spent to much time rooming with Latin and thus persons of unknown genders are usually referenced as male. If you are a disembodied spirit, what is your mechanism for posting comments? And if humans are capable of adapting to circumstances and defining happiness based on their current one, why would you need to ‘help’ Atheists? Clearly they are capable of being happy with their world views and will not suffer because they had to wait until they died to to discover you were correct.
The original topic Dr. Novella was discussing is far more interesting than the comments. How about the comments stick to the OP?
OK- I’ll start…
Interesting about the locked in folks feeling happy. But when I think about what it is that makes us happy or unhappy, it’s often everything that is going on around us, the stresses and joys of life. People who are more limited in their ability to process, communicate, understand all the nuances may not get too stressed out about what’s going on around them and thus feel happier. I look to my own mother and mother-in-law as great examples. Both are elderly and having neurological issues (memory loss, confusion as to time and place, etc.). But both are happier than they’ve been in years, especially my MIL who suffered from serious bipolar issues all her life. So I think that while locked in syndrome or Alzheimer’s or developmental disabilities might be horrible to have, there might be at least one upside to these problems. Not that I’d want to trade what I can do and be now in order to be happy though!
In regards to death and the afterlife, I subscribe to the Hitchen’s Afterlife Party argument:
“The clear awareness of having been born into a losing struggle need not lead one into despair. I do not especially like the idea that one day I shall be tapped on the shoulder and informed, not that the party is over but that it is most assuredly going on—only henceforth in my absence. (It’s the second of those thoughts: the edition of the newspaper that will come out on the day after I have gone, that is the more distressing.) Much more horrible, though, would be the announcement that the party was continuing forever, and that I was forbidden to leave. Whether it was a hellishly bad party or a party that was perfectly heavenly in every respect, the moment that it became eternal and compulsory would be the precise moment that it began to pall.”
— Christopher Hitchens (Hitch-22: A Memoir)
srsly? SRSLY?!?! LMAO!
I think SA is pec.
Ummm. Getting back to the actual blog…Are people suffering from locked-in aware of their own bodily functions: heart rate, breathing, tactile sensations? Studies done on people w/diminished bodily awareness due to paralysis has shown a decrease in emotional highs and lows. Could some of the ‘happy’ response be due to diminished physical awareness that would otherwise be felt as ‘unhappy?’
SA:
“how do you know I am a guy?”
No, you’re much too cute.
Adaptogen,
I like to complement Hitchens quote:
“The clear awareness of having been born into a losing struggle need not lead one into despair. I do not especially like the idea that one day I shall be tapped on the shoulder and informed, not that the party is over but that it is most assuredly going on—only henceforth in my absence. (It’s the second of those thoughts: the edition of the newspaper that will come out on the day after I have gone, that is the more distressing.) Much more horrible, though, would be the announcement that the party was continuing forever, and that I was forbidden to leave. Whether it was a hellishly bad party or a party that was perfectly heavenly in every respect, the moment that it became eternal and compulsory would be the precise moment that it began to pall.”
— Christopher Hitchens (Hitch-22: A Memoir)
…with a quote from Dawkins:
“We are going to die, and that makes us the lucky ones. Most people are never going to die because they are never going to be born. The potential people who could have been here in my place but who will in fact never see the light of day outnumber the sand grains of Arabia. Certainly those unborn ghosts include greater poets than Keats, scientists greater than Newton. We know this because the set of possible people allowed by our DNA so massively outnumbers the set of actual people. In the teeth of these stupefying odds it is you and I, in our ordinariness, that are here.” – - Richard Dawkins, Unweaving The Rainbow, 1998.
BTW, as a matter of interest, Hitchens has terminal esophageal cancer. I wonder how he’s getting on.
Irv nice of you to throw up a post, especially a quote from the inimitable Hitch.
Billyjoe, I believe he is doing well as can be expected, since he is still debating and writing. In fact he just wrote an article for slate on “The King’s Speech”
@nybgrus
Though I was recalcitrant at first, I have realized the need to take part in the conversation. It seems far more fun and involved than just sitting in the sidelines.
Now that I am doing the comments thing, is there a way to be notified that there was a response? Or is it something you have to regularly check?
@BillyJoe7
I love that Dawkins quote. Thanks for bringing it back up to the forefront of my thoughts.
Seeing Hitchens deal with cancer with a stiff upper lip is something to be admired. I really found his Vanity Fair articles about cancer and dying interesting. There is something to be said about a man who can call the battle with cancer banal and boring.
@adaptogen: I just check back. Mostly threads die down in a day or so unless they are more interesting then a couple of days – so I just keep the tab open and refresh from time to time. Perhaps if you signed up for the RSS? The other would be to check the “recent comments” section on the homepage – but that requires you remember the name of the article and check back anyways so tabbing it just seems easier to me. Unless some other poster out there knows something I dont? Please share
If I was locked in, I would do quite a bit of what I do right now –
Read a lot
Watch a lot of TV & Movies
Listen to audiobooks
My only regret would be that I couldn’t contribute much to society. I wonder, what sorts of productive things can a locked-in person do?
In a similar vein, does anyone know the usual location of a locked-in person? Can they be at home? Some sort of medical facility? A nursing home?
Also — I really, truly, honestly DON’T believe in an afterlife
(I actually wish I did…but I don’t–FULL STOP–seriously)