Dementia test
August 4, 2006
Both our internal information people and the local press are
getting very excited because some Karolinska people have made some
pretty good progress towards developing a test that will predict
dementia 20 years ahead. [Press
release, with links to the original article] It’s cool science, no
doubt about it, but I can’t help wondering, would you want to
take a test at the age of 50 that might predict that you had a high
chance of being senile by the time you were 70? I guess it’s the same
problem as with any predictive medical testing: in the absence of a
cure or even sensible prevention, what’s the point of knowing?
I think it’s the timescale that bothers me, in part; I don’t have the
same objection to, say, cervical smears which tell me whether I might
be at risk for cancer in the coming few years. That allows me to do
something about it in terms of possibly readjusting my life plans. But
I can’t plan on the basis of some terrible thing that might happen in
20 years’ time; I’d just have to live with the knowledge that this was
likely to happen to me, which I don’t think would be good
psychologically.
It’s true that almost everybody expects to be mortal (the exceptions
are a few religious people and a few quasi-religious geeks who think
the Singularity is going to cure death). So you always have to run
your life on the basis that you have a few decades at best and
possibly even less. But I’d still rather not know the probable time
and manner of my demise more than a few years in advance, I think.
August 4, 2006 at 9:37 am
There are a couple of legitimate uses, I think. Many people don’t save enough for a normal retirement, let alone one that requires expensive in-home/residential care like dementia; this might be a wake-up call to such people. (Of course, people who are so disorganized about retirement are likely to fail to take the test, too.)
I have also heard the opinion expressed by some people that it would be better to be dead than to be senile - they can then make suitable arrangements in advance, to be put into place when they notice the onset of senility.
August 4, 2006 at 10:13 am
I don’t think that most people really realise that they’re mortal*. It could be a really life affirming wake up call of ‘You’ve got two decades left; don’t waste them.’ There may also be people who have a history of dementia in the family and so already think their going to get it and the test will either just confirm their suspicions or give them relief from the expectation that it will happen to them.
*It reminds me of an anecdote from an HIV positive comedian who said that he was doing stand up and said “I’m HIV positive. Do you know what that means?” and someone yelled “Yeah, you’re gonna die.” to which he replied “And you’re not? Ladies and gentlemen we have Jesus at the back of the audience!”
August 4, 2006 at 10:17 am
Well, as the article itself points out, if you know you’re at risk, you can start taking medicine earlier and delay the onset of the disease.
I read the other week about a whole family, who had a genetic predisposition to stomach cancer in their fifties, who all had their stomachs removed as a prophylactic measure. That’s a hell of a decision to take—rule out eating normally for the rest of your life against the (likely) probability of stomach cancer years if not decades in the future.
August 4, 2006 at 10:45 am
There are steps being made towards prevention of dementia and suchlike - supplements that boost chemicals thought to improve memory retention and suchlike. The problem is that no-one knows the long term effects; thus it might be sensible for those with high risk to take the supplements.
August 4, 2006 at 12:41 pm
A few decades or less strikes me a tad optimistic - living in a place surrounded by crazy drivers has made me reconsider my projected life expectancy. On the plus side, its a near religious experience to have just avoided being flattened by another vehicle….
August 4, 2006 at 4:06 pm
Think I wouldn’t want to know; how to ever shake this knowledge?
But as you say, cool science.
August 4, 2006 at 5:03 pm
My mother watched both her parents die of Alzheimer’s disease. It’s not clear to me how much that overlaps with the “dementia” in the article. As soon as there was a test for the genetic marker for early-onset Alzheimer’s, my mother wanted to have it. She lives alone, and she’s terribly anxious. When a woman in her fifties (who is tempermentally inclined to obsessive worries) starts to become a bit forgetful, how can she tell if it’s just normal forgetfulness or the beginnings of something more serious? They tell everyone, “Forgeting where your keys are is normal. Forgeting what keys are for is Alzheimer’s.” But my mother’s house is full of things that *I* couldn’t tell you what they were for — it’s not that I have dementia, it’s that I’m the wrong kind of geek.
August 5, 2006 at 2:43 am
I am big into long-term planning. I would want to know.
August 5, 2006 at 5:19 am
I’m with . I think it really could be a stimulus for living and decision making. A very concrete justification for really working out what ‘living’ means and doing it, as much as a predictor of doom and warning to take action now.
The press release is pretty vague on the detail about the predictive power and accuracy of the risk score though. While I’d want to know myself, I’d want to know with some certainty. Being told that I had 5% chance of developing some form of vascularly-caused dementia wouldn’t be especially useful (and what is the general chance anyway I wonder?), but being told there was an 80% chance I’d lose my marbles due to a string of CVAs would be a different thing. I’d take the Sword of Damocles then, rather than not know and not be able to plan.
On the subject of dementia, you may be interested in a href=”http://www.abc.net.au/worldtoday/content/2006/s1694969.htm”>this. The company’s press release is here. I’m amused at the coincidence of the trial taking place in Sweden.
August 5, 2006 at 1:52 pm
Predictive tests would be wonderful if they gave 100% certainty but, in reality, the results give anything from a 90% probability to ‘double the risk in the general population’ of a very rare condition.
At 90%, the test result is usable information: I’d start making arrangements: nursing homes, do-not-resuscitate contracts, and a veto on pension plans that involve annuities or long maturities.
At 50%, the test result is a curse because I can’t use the information. At least, not at current levels of medical knowledge for dementia. Heart disease would be a different matter, even at a 20% risk forecast - I’d make radical changes to my lifestyle, rather than the general preference for a healthy diet and exercise that is my current lifestyle strategy, and I’d get regular check-ups.
Of course, at even 2%, the information would be used for me by insurance companies. O rather, against me.
August 6, 2006 at 1:27 pm
The idea that the existence of such a test (assuming that it’s developed to the point where it’s commonly available) might encourage people to make more financial provisions for old age is definitely a possible application. Though previous examples tend to suggest that at least a proportion of people, finding out they have something scary in the future, decide to live as complete hedonists and stop being sensible at all, because they’re screwed anyway.
I am really, really wary of the “better dead than” types of opinions. Partly because a lot of people describe the kind of fate which would cause them to prefer death and end up talking about aspects of my brother’s situation. I know intellectually that noboday actually wants to kill my brother, but emotionally I find it very hard to assess such arguments in a neutral way. I do feel like there’s sometimes an undercurrent of “it would be better for society if people like that conveniently preferred to be dead, not of course that anyone would ever advocate murdering a person who was very expensive to care for, but if it were entirely voluntary…” Sometimes, people who make those kinds of arguments are (unconcsiously) propagating the meme that death is better, more than they are actually imagining themselves in that situation.
I also don’t think that, as society is at the moment, it’s all that possible to “make arrangements” to die in order to forestall a terrible outcome. Even people who are currently in terrible pain face a lot of obstacles in getting help to end their lives.
August 6, 2006 at 1:36 pm
That’s a really good point: many people don’t really believe in their own mortality on a level that affects them emotionally. The trouble is though that 20 years is too long. I came across some research into the psychological aspects of cancer treatment which concluded that, if you tell someone that they have an evens chance of dying within 5 years (obviously you express it less brutally than that!), it affects them, but if you tell them that they have an evens chance of dying within 10 years, it has no measurable effect. Of course, that’s a statistical conclusion; some individual people may feel an emotional connection with their future selves more than 5 years ahead.
To be honest, any given 50-year-old has a significant probability of being dead within 20-30 years, so knowing that they will likely be senile in their seventies doesn’t really change the situation all that much in terms of how they view their future and how much time they have left.
August 6, 2006 at 1:41 pm
That’s assuming there is some medicine one can usefully take, yes. I’m not against all predictive medical testing in a blanket way. I guess in this case the main intervention available would be blood-pressure controlling medications (and possibly life-style changes); those are not sufficiently safe you’d want everybody on them just as precaution.
The stomach cancer example seems a bit odd; surely if you have a genetic tendency to stomach cancer in your 50s, you’re not going to gain much by having your stomach removed as a child or in your 20s; why not continue to live a normal life (though presumably having regular checkups for any possibly cancerous changes) until your mid forties or the first abnormal biopsy?
August 6, 2006 at 1:44 pm
Are there? Drugs that help to prevent dementia that are currently in development? I didn’t know that, and my comment was based on assuming there are no such drugs. But certainly if that is the case it makes the test a lot more useful. And of course it’s useful to develop the test so that it will be available if someone does come up with a possibly unsafe preventative drug! That’s part of what I meant by saying it was good science.
August 6, 2006 at 1:47 pm
Eeek, you’re scaring me. Do take care of yourself. I do remember when you suddenly got a lot more careful about London roads because you had a family to provide for. But yeah, car accidents are the major example of totally unforseeable causes of death; the 50-year-old who is stressed about going senile might get run over tomorrow and all the worrying and medical testing would be for nothing.
August 6, 2006 at 1:50 pm
Did your recent spell in hospital make you feel more mortal? I know I felt a lot more aware that bad things might happen to me after spending time in a hospital, (though in my case it wasn’t me needing treatment but just visiting my brother after his accident in 2002).
August 6, 2006 at 1:55 pm
Not so much mortal as fragile, actually — the realisation how vulnerable I am hit me, quite literally. That and the fact I’ll grow old and older, more dependent on others are definitely something I took away from the hospital and the rehab clinic and will continue to carry with me.
August 6, 2006 at 2:01 pm
I’m really not very well up on dementia; I should read more about it. I didn’t know that there was an identified genetic marker for Alzheimer’s. In a way I can much more strongly see the point of taking the test, if you have a family history and want to know if you carry the gene, because that gives you definite enough information to work on and the possibility of reassurance if you don’t have it, when you’re likely to be worried anyway.
The test I linked to seems to be mostly a lifestyle questionnaire, with little (or even no, I skimmed a bit) biochemical component. So all it would do is tell someone like your mother what she knew anyway: she’s at high risk due to her family history. I agree with you that it’s a bit odd to talk about dementia in that vague, general way; everyone will assume Alzheimer’s but I’m pretty sure they would have said that if they meant it.
Worrying about possible dementia from late middle age onwards is to some extent unavoidable. I’m not sure whether making that worry worse is desirable or not. There’s an advantage in that you’re more likely to get intervention early if you are watching for symptoms, but the level of help currently available is barely even at the level of damage limitation. So I’m not sure that balances the disadvantage of having to spend your life in a state of paranoia about losing your mind. For people who have lost a parent, and to a lesser but probably still significant extent any older loved one, to that disease, well, it really only depends on temperament whether they’re going to be scared anyway. Tests, even negative ones, probably won’t help much with that.
August 6, 2006 at 2:03 pm
Long-term planning is great; you may well be an outlier in terms of being able to see yourself 20 years ahead. But what kind of planning would you do, if you knew you had a higher than average probability of developing dementia in the next 20 years? (That’s a question, not a statement of disbelief.)
August 6, 2006 at 2:11 pm
Thanks for the link; very interesting to know that there is possibly a drug for slowing the onset of Alzheimer’s on the horizon.
You’re quite right about needing more statistical information to be able to assess whether the test is useful. That’s always the way with any attempt at predicting anything, though; you can put numbers on it but probably a sadly small proportion of the test subjects are going to have enough grasp of risk and statistics to make any sense out of the numbers. And even for those who do understand risk, it’s hard to set the threshold for what level of increased risk is actually useful information.
I’ll ask you the same question I asked ; if you did find out that you were at risk (for some meaningful value of “at risk”), what kind of planning would you be doing? I can see a lot of merit in the idea of , but I’m inclined to think everybody should do that anyway, on the grounds that we’re all mortal.
August 6, 2006 at 2:28 pm
Yes, good point about the perils of only knowing altered probabilities. That’s pretty much all you get with any medical test, though, as you know.
I like the way you’ve come up with practical suggestions for how you would react knowing that you might be senile in 20 years’ time. Actually looking into nursing homes versus making investments that gamble on your living longer than average, good thoughts.
I think this test is a useful thing for the world in general, because the scientific / medical community are making real progress into the study of dementia. People have mentioned preventative drugs and even one which delays the progress of Alzheimer’s, and I do think there’s a reasonable chance that we will get to the point where there are lifestyle and pharmaceutical things you can do about a nasty flag on a test result. At that point, the test will become useful; right now it’s a case of, would you really want to know that something horrible is going to happen to you when you can’t do anything sensible to prevent it?
I’m a lot less worried about insurance companies using medical tests than people in general seem to be. It’s one area where I largely trust the free market to sort it out. (Of course, this depends on there being such a thing as the NHS and social security generally, so that even uninsurable people have some kind of backup. The abominable situation in the US is a different scale of problem altogether.)
August 6, 2006 at 2:43 pm
That’s assuming there is some medicine one can usefully take, yes.
I do seem to be seeing positive things coming out of Alzheimer’s research all the time; I’d be surprised if treatment doesn’t start dramatically improving in the next couple of decades.
The stomach cancer example seems a bit odd; surely if you have a genetic tendency to stomach cancer in your 50s, you’re not going to gain much by having your stomach removed as a child or in your 20s; why not continue to live a normal life (though presumably having regular checkups for any possibly cancerous changes) until your mid forties or the first abnormal biopsy?
I don’t know. I’d have posted a link to the original article on the BBC news site, only I can’t find it now. Here’s one Google found for me elsewhere.
August 6, 2006 at 4:52 pm
see this news article. Alzheimers is only one type of dementia, but at least it’s progress.
August 6, 2006 at 9:51 pm
‘Cherry-Picking’ by insurers and the converse tendency to exclude any elevated risk, no matter how minor, is all part of a competitive and efficient market place in cheap insurance for the average driver, the fortunate homeowner, and the healthy ‘health plan’ policy holder.
However there are glaring market failures afflicting unhealthy people (and, for that matter, unlucky homeowners in subsidence-prone postcodes, no matter how good their foundations may be). It’s not that you would be denied healthcare altogether - civilised countries have some kind of NHS - but you’d be excluded from ALL private healthcare. Note that my private GP Plan has been terminated on leaving hospital - not lumped with an exclusion and a loaded premium - and I could easily find that a 5% elevation-of-probability on a predictive test for, say, heart disease, would give me problems with mortgages, business loans, and possibly even regular employment - big companies are at the mercy of insurers because senior posts *have* to be covered by ‘key man’ insurance policies.
August 6, 2006 at 10:04 pm
Yes, developing this test is definitely going to become more useful as the ability to do something about dementia improves. And it would be silly to put off developing a test just because there’s no cure or useful prevention right now.
And ok, that story about the stomach cancer family makes more sense now I know the background. Cheers.
August 6, 2006 at 10:05 pm
Yes, and very encouraging progress at that. Yay. I so need to read more outside my field!
August 6, 2006 at 10:08 pm
Yes, there are a whole bunch of different things, there’s fragility, how easily you can go from perfectly healthy to really broken, and then there’s aging with associated deterioriation and dependence, and then there’s the actual mortality. I wish you hadn’t had to go through such a horrible experience to gain the wisdom though.
August 6, 2006 at 10:18 pm
I’m a bit shocked that you were thrown out of your insurance plan altogether because you were hospitalized; that somewhat defeats the object of having health insurance altogether. But I am assuming you have the option to go to a different insurance provider who may have more reasonable terms, or at least will cover you for future illnesses not related to the problem you had?
I take your point about mortgages, venture capital and employment being partly dependent on the whim of the insurers, not just the insurance itself. But I do think that’s balanced by the fact that as more and more predictive stuff is possible, we will end up with the same statistical noise that there is at the moment, just shifted to a different level. Because if someone has a 5% elevated risk of heart disease, another person has a 5% elevated risk of cancer, and another a 5% elevated risk of suicide, and so on. So it ends up being a gamble on how well the insurance company can predict your (productive or overall) life. As with any gambling the odds favour the house, but frankly if insurance companies weren’t able to make profits there would be no insurance anyway!
I just think that society is going to fall apart from some other cause long before we get to the SF dystopia of insurance underclasses. Even with your point about other things depending on insurance, I’m much more worried about more and more people being excluded from the NHS or even, God forbid, the NHS imploding altogether, than I am about people being excluded from insurance.
August 6, 2006 at 11:33 pm
more and more people being excluded from the NHS
What do you mean by that?
August 7, 2006 at 3:31 am
Whoops, hadn’t noticed that I hadn’t opened the HTML tag properly until I came back to reply.
Sorry about that.
I can see a lot of merit in the idea of really working out what ‘living’ means and doing it, but I’m inclined to think everybody should do that anyway, on the grounds that we’re all mortal.
I agree with you generally. Doing the kind of work I do, mortality is a difficult concept to escape (and when I was working in hospitals it was even harder and really got to me for a while). However, most of us don’t plan or think ahead particularly like we’re mortal. We know old age and death are coming but we don’t do much about them until they becoming considerably more urgent and present.
What would I do, how would I improve my ‘living’ if I knew I was likely to be dribbling and unable to remember who I was on any given day in 20 years time? Hmmm…. I think that has covered many of the practicalities. Right now my mind seems to be turning toward the impracticalities instead - seeing, feeling, doing new things, or things I’ve always wanted to (while I can appreciate them), rather than focusing all my efforts toward staving off, delaying and managing what I know must come.
Like just about everybody (but I think it bugs Australians more for some reason), I would like to travel. I’d like to stand on the west coast of Scotland and look over the Irish Sea, feel the wind and hear the gulls. I’d like to putter around the harbours of Hong Kong and Macao for a week or two, feeling the different rhythms of the places. I’d like to visit the Vatican and see what life and business is really like there. I’d like to spend nights in the central Australian desert, watching the stars and freezing my arse off. And I want to spend some time working in Antarctica, listening to the wail of the katabatic wind, and seeing the rafts of both ice and penguins…
… I had written a whole list of other things that I want to do, and would feel seriously compelled to try if I knew that both time and me were running out in a different way to one I feel comfortable with. (I can cope with the dubious pleasures of most aspects of senescence, but the idea of dementia really bugs me.) But the list didn’t really add up to much of an answer. So, I’ve been sitting here contemplating what I think ‘living’ well is, and what I should do about it.
Going from the now-overwritten list and the ideas about travel I have kept, one common aspect is experiencing things. I think one of the most worthwhile things people can do to grow and become is see, feel, and do new things (and arguably that kind of engagement with the world my help protect against dementia anyway). But the inner …something… dour Calvinist maybe?… in me says that that’s not enough. Just spending time like that has elements of taking without giving back. So, not only do I want to experience more of the delights the world has to offer, I also feel compelled to add a few myself. Which is one of the many reasons I got into health care, and one of the reasons I enjoy cooking. (And contrary to popular belief, I do enjoy cooking. All the swearing is just because reality is failing to match up with my ambition and imagination at the time.) Ultimately, I think ‘living’ involves spending less time at work, but if I have to work then I want it to be something I consider to be adding something to the world. If I knew that what I had put in all the time and effort to learning was going to be lost, bit by bit, I’d feel even more pressure to get into teaching others. It’s not that what I know is especially detailed or brilliant, and will never be gained or found again, but it is unique to me, and I’m enough of an egoist to think that my experience and perspective have some value to someone out there.
I’d be putting in even more thought about how to achieve that balance, as much as trying to do all the things I want to before they become less meaningful to me, or I was able to appreciate them less. And working to balance the big and the small stuff. I perceive value in sitting around with my friends arguing about House as well as sailing to New Zealand. I’m guessing that my planning would be both oddly cliched, and oddly reflective.
August 7, 2006 at 10:21 am
20 years from now? That’d be pretty early on-set, I think, and would suck. That’d affect my requirements for having children. Although not much moreso than they already are because of my disabilities, but would matter were I healthy.
It’d affect what projects I work on. There are things I want done in my lifetime, but are not high priority. They would be pushed to higher and higher priority as my likely time of losing it came closer.
My likely future affects everything. You get no guarantees, but I plan based on my likely future. Changes to that are the most significant changes there are, much moreso than changes to my likely short-term present.
August 7, 2006 at 11:12 am
I entirely agree with you about the dubiousness of the ‘I’d rather be dead than’ arguments personally. I included it basically on the assumption that at least a small number of the people expressing such opinions might have thought it through and be entirely sincere in their conviction. Fortunately, I don’t think this is an application that is ever going to be strongly developed - it’s just a conceivable use of the results of the test.
August 7, 2006 at 4:53 pm
I agree that the press being excited is a bit barking up the wrong tree. Though if I know there’s an easy test, it’d be hard to not take it, even if in theory I’d rather not know.
What surprised me most is it wasn’t biochemical, but about your current body and lifestyle: does that mean your sedentriness etc contributes to dementia? Or comes from the same cause? *That* seems a very useful observation, for potentially finding out how to prevent it.
August 7, 2006 at 5:06 pm
That’s about what I was going to suggest, partly in jest, partly seriously.
I would have guessed that most people saying “I’d rather die” don’t really mean it literally, the choice is too remote and theoretical for them really to have considered it. But you may be right that they’re comparing that person’s life to someone else’s.
But conversly everyone and everyone’s situation is a bit different: *some* people probably genuinely would prefer not to live with some level of impairment. It’s not something I can decide for anyone else, but if I prefered 20 good years to 20 ok years and 10 more years, I should also have the right to decide.
August 8, 2006 at 5:39 am
There is not a genetic marker for Alzheimer’s disease in general. The marker is only for a particular form they call “early onset,” that starts to do damage before age 60 (sometimes much earlier) and has other distinguishing features I don’t remember. There are apparently different diseases striking 50-year-olds and 80-year-olds, though they have some very similar symptoms. There is no genetic test for the late-onset form of Alzheimer’s. Or there wasn’t, when I was last paying attention a few years ago.
When you say it’s a lifestyle diagnostic, that makes me suspect it’s not really about dementia at all. I suspect the point of the questionaire is to pressure people to make lifestyle changes. (Or if not, to at least feel guilty or anxious about the lifestyles they have.) It’s not enough to know that smoking causes lung cancer and increases the risk of heart disease, people are still smoking. (Duh. Smoking is addictive. They try to quit and can’t.) If only people knew smoking was bad for them, they would quit. Here, you can find your risk of getting dementia, that’s even scarier than cancer these days — see how much worse it is if you smoke? Or how much worse it is if you’re fat? Or if you’re uneducated? Or if you have high blood pressure?
The focus is on things the patient can try to control directly, even if such control does not work reliably. I looked at the study you pointed to, and they didn’t actually track smoking, though I think a US study of Alzheimer’s did. They track the other things I mention. They’re not looking at things like toxin exposure, where a community rather than an individual might be to blame, or responsible for fixing it.
August 8, 2006 at 7:28 am
Shit, Adrian, are you telling me this is just one more bit of propaganda for the health-as-virtue meme? I can’t believe I fell for that, and it’s even more distressing to see that kind of “breaking news, poor people have worse health than rich people!” research coming out of a respected institution (which happens to be my own employer, to boot). Thanks for the info about the different forms of Alzheimer’s, by the way… I’m trying not to rant at you but if I’ve understood your comment correctly, it’s the kind of thing that makes me really angry, ugh.
August 9, 2006 at 10:20 pm
I think there are situations where “I’d rather die” is a choice that has a moral aspect to it, but that seems clearer to me in the hypothetical realm of “otherwise I will be forced to do horrible act X”. [ I'm pretty sure of most people's vulnerability to sleep deprivation, and mine in particular, enough to make acts of will as a way of resisting here seem limited. ] With regard to being physically or mentally impaired, I’m really nit sure where I would make that choice for myself, if I would at all - many of the situations where the thought of having lost enough of me to find that direction tempting from where I am now are also situations where I would probably have lost that perspective.
August 9, 2006 at 10:21 pm
Also, the thing about the additional ten years in your last-para example is it’s ten years more for a new treatment to be discovered to ameliorate the condition in question in ways to improve whatever quality-of-life metric one is using to make the decision.
August 9, 2006 at 10:21 pm
It’s true, hedonism is one valid response to mortality. But I doubt it’s what the people developing this kind of test want to promote!
I take your point about people who genuinely do prefer death, and that being a decision that only the person involved can take. That’s definitely true in theory, but I have never heard of a legal framework where voluntary euthanasia could happen that wouldn’t be massively open to really horrible abuses. So I’m ambivalent about the concept.
August 9, 2006 at 10:24 pm
I don’t know. On the one hand it feels to me that I am very, very conscious that anyone can walk under a bus tomorrow. On the other, my ethical structure for living my life does entail making long-term plans. In hope, rather than confidence, that they can come about.
I know nobody I care about will ever be lost without knowing that I care about them. Communicating that is probably the biggest thing in my day-to-day behaviour that’s directly informed by awareness of mortality.
August 9, 2006 at 10:27 pm
How is it knowledge on a different scale from knowing you have a finite lifespan anyway ?
To my mind they’re the same philosophical/emotional problem, with the same solution that works for me.
August 9, 2006 at 10:30 pm
Finite — but unpredictable.
Thanks for the link; I’ll take a look.
August 9, 2006 at 10:48 pm
Rather die than succumb to torture, that makes a lot of sense. Lots of kinds of torture are effective in ways that override an act of will to resist, not just sleep deprivation. And presumably what the torturers want the subject to do is something they really don’t want to do, otherwise torture wouldn’t be necessary in the first place. There is also torture of the pour encourager les autres variety and people being tortured who genuinely don’t have the information the torturers want, but in that case I can still see death as preferable to continued torture which one isn’t going to be able to get out of due to not being able to do the required horrible act.
Rather die than continue to endure pain not intentionally inflicted also makes sense. Impairment, in the absence of unbearable pain, doesn’t seem as compelling to me. Impairment means not being able to do some of the things one wants to do, but being dead means not being able to do anything at all; that really does seem like a solution that’s worse than the problem.
And yeah, the mental impairment thing does lead into exactly the paradox you’ve outlined here. It’s hard to ask myself the question of whether I would rather die than live with so little cognitive function I could no longer be considered to be me. In some sense the latter is almost equivalent to death anyway. But there isn’t really an ethical framework in which one could work on the basis that someone who has completely lost their mind is no longer human and no longer worth saving. The Terry Schiavo case, where she was by every reasonable definition a living corpse, made me think about this, but that was such an extreme situation, I don’t think one could generalize from that. Or at least, I wouldn’t want to live in a society where that principle was generalized.
August 9, 2006 at 11:01 pm
Thank you for this comment, it’s a wonderfully pithy summary of the whole issue around predicting one’s own death that I was trying to get at. I think it is fair to say that you are unusual in being as strongly and sensibly aware of your own mortality as you are. Anecdotally, my feeling is that is right to talk about most people.
Not making any long-term plans at all because of the bus tomorrow scenario would strike me as highly unethical as well as stupid. I think that’s probably the root of why I’m uncomfortable with ’s tongue-in-cheek suggestion that complete hedonism is the response to a dire medical test result.
I really love the idea of making sure you don’t wait until it’s too late to tell someone you care about them. That’s one of the best responses to the fact of mortality I’ve ever come across, so thank you for putting it into the discussion here.
August 9, 2006 at 11:06 pm
I think you and Mona are both right here. It’s part of the point I’ve been trying to make all along: knowing you’re likely to go senile in 20 years time is not philosophically or to any great extent practically different from knowing that you’re going to die at some point in the next few decades. However, I do think that knowing the expected time and manner of your death would make a psychological difference, and not really a positive one. (Well, there’s knowing and knowing; the bus could still get you, or else a cure could be discovered in the interim. But you see what I mean.)
August 9, 2006 at 11:13 pm
Sorry, I was a bit unclear. The 20 years was 20 years from a hypothetical now when you would be 50, so things like children wouldn’t be so much of an issue. But even if it wasn’t the question I was intending to ask, I like your answer anyway, it’s interesting and thought-provoking. Yes, changing priorities for which things need to be done first is a very good point.
And I’m fascinated that you think changes to your likely long-term future are more significant than changes to your present situation. I don’t think I’ve come across anyone who thinks like that before now, at least not anyone who puts it in those terms. It does make rational sense, though, so you’ve made me think.
August 9, 2006 at 11:24 pm
The latter part is one of the deepest aspects of what makes me me… or used to be. I made a commitment as a child to a consistent identity across time. To not betraying my earlier selves with changes that I would not approve of, to being able to rely on myself, and to always viewing things by both the past, present, and future. It was something I did so early that it rippled throughout so much of how I formed. It’s part of why I had an amazingly good memory of my life, and parts of this still show up and are recognized by people I get romantically involved with. It’s why I nearly destroyed myself when I broke a promise I had made to myself (had to, got myself stuck in a paradox :/), and why I never, ever make promises anymore. And why I was so horribly devastated when one of the symptoms of my illness was the loss of the sense of the passage of time. I suddenly felt unmoored… lost in an eternal present, unconnected to my future, and I had lost my past because all of my memories got scrambled at the same time by the same health issues.
It’s less strong now, because of those health issues. But more than two decades, and the formative ones, of that being so key to who I am leaves its marks. And I do not lose sight of the goals I strive toward.
I also, sadly, likely helped to cause my health problems this way. I was so willing to sacrifice short-term enjoyment for long-term benefits that I consistently kept myself sleep-deprived to do exceptionally well in school. And that didn’t pay off. But I felt 5 to 10 years of painfully hard work would be a small price to pay if it meant a good future with financial stability and thus a chance at a happy family and a fairly good and long adulthood. I am reasonably strong. I can accept pain or hardship. But if I have no hope of a good life, that is much harder to accept.
August 12, 2006 at 9:09 pm
Thank you very much for expanding on your comment like this; I find this description really fascinating. The idea of being committed to a consistent identity is a motivation I’ve not come across before, certainly not described in thoes terms. (Of course, I am very sorry to know about your health problems and the ways they cross with your pyschological makeup.)
August 12, 2006 at 9:11 pm
Health problems cross with most people, sooner or later, no matter what you invest your ego in. Identify with being smart… the brain dulls… identify with how you feel about things, physical illnesses change your emotional reactions. Given the health issues I went through, it’d have crossed with pretty much anything I had focused on. And even for most people, sooner or later, life happens. So, you learn to accept that you make plans, and then life happens, and then you re-adapt.
August 12, 2006 at 10:10 pm
Really interesting thoughts, thank you. Almost, the answer to the question of what you would do if you had a definite time limit as opposed to just knowing you’re going to die at some point, is the answer to the question of what you think is the meaning of life, and that’s always an interesting topic. Like you I find the prospect of dementia more scary than a lot of other terrible things that might happen to me.
Definitely know what you mean about working in medical contexts. Even when I was working in a lab that was located in a hospital and personally had no direct patient contact, I noticed that. So I can only begin to imagine what it’s like in your line of work.
I like your thoughts about travel. Wilderness places appeal to me much more than cities, in many ways. But I tend to use up all my travelling energy to see friends rather than places, which generally does mean ending up in cities.
Interesting thoughts about teaching. I teach because I love teaching, but as a response to mortality that’s a really interesting one. Thank you. I also really like the way you discuss the role of work in your life. I definitely put a high priority on finding job where I can feel I am contributing something meaningful. For me, a contribution at several levels of remove is ok; I think that’s where my talents lie anyway. I’m a lot better at doing science than I think I would be at doing medicine or providing emotional support for sick people. But a job that felt pointless would really make me resent having to spend such a huge proportion of my life working on it, though of course I would do it if it was the only way I could have enough money to live independently.
I feel like that about my leisure time too though. So definitely spending time sitting around with my friends arguing about whatever (not TV shows, in my case, I don’t watch TV) is very important to me. I would say perhaps even more important than accumulating Experiences. And of what I do for fun, very little is centred around the activity for its own sake and almost all is centred around the social aspects. That’s why my major, major laziness activity is LJ. One exception: I want to read as many books as I possibly can before I die, and if I thought death was imminent probably the first thing I’d do would be to step up how much I read. That’s a purely selfish and non-social pleasure.
Oh, I love it when my posts set off discussions like this! Thank you again for contributing such fun thinky stuff here.
August 12, 2006 at 10:27 pm
I’m rather concerned about the NHS, even though I know that at least part of it is meaningless political scaremongering.
But. Closing the smaller local hospitals and combining everything into huge “centres of excellence” means that it’s physically harder for people to get to hospitals. The most vulnerable people are the ones who can’t use public transport (assuming it even exists, in rural areas, becuase public transport is going to hell too), and can’t afford taxis. Likewise restricting the hours that doctors, particularly GPs work. It’s a totally stupid idea to force doctors to work 80 hour weeks, I can’t deny that, but the only sensible solution is recruiting more doctors rather than restricting access to medical care.
People being unable to get on waiting lists because then the healthcare trusts wouldn’t be able to meet their waiting list targets. And therefore falling out of the system altogether.
System getting increasingly reliant on utterly broken IT infrastructure.
More things going the way of dentistry and optometry, where it’s near impossible to get NHS care, and even if you can you’re paying a fair amount out of pocket for it.
The distinction, which to my mind is both idiotic and evil, between “medical” and “personal” care. If the only way you can get help with bathing and dressing and being turned in bed if you’re poorly mobile and even eating is in hospital or through the private system, you’re excluded from something that I think any decent healthcare system should be providing.
Refusing medical treatment to asylum seekers / illegal immigrants / whatever your oh so polite term for “smelly foreigners” may be.
The dark rumours about healthcare rationing. Of course there are not infinite resources for healthcare so there needs to be some means to decide how money can be used most efficiently. And I know that currently, all the stuff about giving priority to non-smokers or non-overweight people or younger people is mostly just rhetoric, but the fact of that kind of discussion even being on the table as a serious political possibility worries me.
Or is this just paranoia due to listening to too much propaganda?
August 12, 2006 at 10:31 pm
You’re right, if it’s true that lifestyle and diet factors like these have a big effect on probability of dementia, that’s really interesting. But do see ’s comment on this. I don’t know if her cynicism is appropriate in this case, but I do know that the medical profession (in the most general sense) is bedevilled by the kind of attitude she mentions. So I would be very sad, but not at all surprised, if she’s right
August 24, 2006 at 2:42 pm
Oh, I see. Good point. I always think of myself as fairly observant and cynical, but then something like this just passes me by completely. That is depressing