Map of life expectancy at birth from Global Education Project.

Wednesday, September 09, 2009


Okay, since nobody cares to comment on the whole QALY concept, I guess if I want anything done around here I have to do it myself.

Obviously any evaluation of QALYs has to depend on how they are used. Just asking people questions, however strange the questions may be, and writing down the answers, can't in itself be wrong, although there might be better uses for your time. That almost everyone is willing to answer the Standard Gamble and Time Trade Off questions with death on one side of the equation proves that life is not, after all, infinitely precious, and that we are willing to take some chances with it or sell some of it out for particular benefits. That makes these thought experiments qualitatively useful, if nothing else.

However, the original point of the exercise, in every case, is quantification. Health economists and clinical researchers want to have standard units that they can use to compare the effectiveness of various treatments, and to allocate scarce resources. As I have pointed out before, these are two very different kinds of problem. They have been conflated in recent political debates and the result is great confusion and error.

A comparative effectiveness study would end up concluding something like "Treatment A yields, on average, 6 years of additional life with a quality score of .6 = 3.6 QALYs, and treatment B gives you 5 years with a quality score of .8 = 4 QALYs." That's kind of silly though, because if you are contemplating a treatment for yourself you don't give a FFOARD what the average response of 100 people to the hypothetical may have been. You only care about your own preferences. Furthermore, these predictions don't apply to you anyway -- you already have a certain baseline state of health, a certain age, possibly specific risk factors that interact with the treatment and with your disease. So you will still want to make your own decision. You want to know the information about the alternatives, but you the relevant QALY scores will be your own, not the result of a survey.

Where the fecal bolus hits the ventilator is when we want to use QALY information to allocate scarce resources. To do that, we have to calculate Cost-Utility Ratios. That's the cost of a treatment divided by the QALYs that it buys. And, in order to make use of the calculated CURs, we have to decide that there is a finite price we are willing to pay for a QALY. While there can be no doubt that there must, indeed, be a limit, it gets very ugly very fast when you start actually trying to apply one.

Most people, when they think about this, immediately see a serious ethical objection: the concept devalues the lives of people with chronic diseases and disabilities. When asked hypothetically to make a Standard Gamble, I may be perfectly comfortable doing so. But when I find myself actually disabled in some way, do I then decide that my life is worth less and I don't mind getting out of the way and letting somebody else use my health care dollars? Or do I feel that way about people I care about? At the extreme, maybe, if I already have Dr. Kevorkian on the speed dial. But most people find that they can cope with their problems and they may well have just as much they want to do with their lives, if not more, than before they acquired the disability.

So this is actually a very difficult problem that has no "scientific" solution. People involved in this field keep prescribing "further research" to clarify these issues but it isn't a matter of "research" to be conducted by brainiacs speaking incomprehensible jargon inside locked laboratories. It's a matter for public engagement and democratic process.

Unfortunately, we are completely unable to have that discussion right now because it immediately attracts hordes of screaming lunatics who inhabit an alternate reality in which death is just a work of the devil that righteous people will defeat. Unless we can get them to sit down and shut up long enough to make a reasonable presentation of the problem and have a respectful discussion about issues we all agree are difficult, we will never reach a manageable accommodation. That's the best we can hope for, but it is also the least that we must have.


kathy a. said...

the QALY stuff is hard to comment on, because it is not how people think. and yes, the question for people with chronic diseases or disabilities is how to readjust and live their new lives as well as possible -- we've collectively got issues with putting people out on the ice floe once they are past prime.

actual humans do need to know whether proposed treatments work, and in what ways; the objectives of the proposed treatments [palliative vs. cure]; the downsides to the proposed treatment [e.g., this might take down the tumor a little and help you breathe, but you will also spend that time barfing and in pain].

C. Corax said...

I actually did begin a response (the first word was "Egads"), but I got called away from the computer and never got back to it.

I'm not sure how to even begin to talk about this. Dogs aren't people, but I'll talk about the last two dogs I had put down. Corbie was a young male with a hereditary cancer that has proven incurable. But he was young, so I tried. I limped out of that experience with a TON of debt and a nagging doubt about whether I had made his final days LESS comfortable. So the next dog, when she began to have cluster seizures of a type that indicated cancer, I chose not to do any diagnostics to find out what kind or how extensive. I just went along based on quality of life. She was a different breed, with a different cancer, but if I may compare apples to oranges in that way, her final days (year and a half, actually) were much better. So there really is something to looking at the quality of life that heroic measures will result in.

As for not being able to have the dialogue, these are the "government out of health care" wackos who tried to force Terry Schiavo's husband to leave her hooked up after she was brain dead. They should stuff a sock in it until their brains de-liquify.

kathy a. said...

i took out a long anecdote about my dad's ongoing chemo after he was diagnosed terminal. the short version is that i was furious with his doctor for offering one after another "experimental" rounds, which only made dad so very sick. and after time, i realized that my dad kept agreeing for his own reason: he knew he was dying and in many ways accepted that, but thought he had to "fight" it no matter what -- i suspect that he didn't want his loved ones to think he was a quitter.

my dad was under substantial pressure from one of my sisters -- the one who wanted to sue everyone in sight when he died, but the rest of us wouldn't let her.

i wish we had had better ways to talk about death, and a good death. we did to some extent; but this idea of battling until death was an elephant that didn't get banished until literally his last hours. i still regret that he didn't get hospice, because at the time of his death he was still considered to be in "active treatment."

Cervantes said...

I wonder why denial and avoidance of these issues seems so highly correlated with religiosity? I've speculated about that question here a bit but I'm just guessing. It seems to me that if there is any plausible defense of religion it would have to revolve around such virtues as promoting the acceptance of death, and calm, informed reflection about difficult ethical problems. Yet I see the exact opposite.

Kathy, I wonder -- it seems a little bit of a subtext in what you write -- whether your father might have thought he owed it to you all to try to stay alive as long as possible. This is an additional complication, of course, sometimes I think that loved ones can be selfish about wanting to hold on to the person. It's a terrible thing to say, perhaps, but I'm about confronting the difficult pieces.

kathy a. said...

yes, cervantes -- that pressure to stay alive at all costs was certainly there for my dad, with respect to my difficult sister. and for a while w/r/t his wife, although i think she and i were more or less on the same page at the end.

the backstory, in my view, is that dad had never really had to cope with an anticipated death up close before, and had no decent examples to work from. when his friends got ill and died, he said it was a hell of a thing and probably pitched into collections for the widow, but he mostly didn't think about it much.

his own parents' deaths were anomolies, and there was nothing he could have done about them. [suicide/OD/heart failure, and homicide/caregiver neglect.] but i think he felt guilty in both circumstances for somehow not stopping them. so, he was susceptible to my sister's rallying cries, to fight all the way.

back to religion -- i'm not a believer myself, but i'm pretty good with beliefs helping one through, so long as they don't impose on others. and i see the gasbags out there, but my personal experience is that loving pastoral care is a good thing.

i've seen this with the buddhist priest who cared for my adopted nephew alexander, who died at 12. and with my dad's old army buddy, who later became a minister, and attended to both my parents in their last months and did both their funerals. with my good friend peg, who is a death row minister, and is there to listen and help. i'm not a religious person, but i believe in the care they and others bring quietly to those who need somebody. they don't make the news, thank dog, but each one has helped people deal in a rational way, and with great compassion.

Bix said...

Very nice explanation of QALYs!

Peter Singer wrote an excellent piece in the NYTs back in July about just this. It was my introduction to QALYs.

Why We Must Ration Health Care;
Public Health Insurance Should Pay Up To $______ For A Treatment That Would Extend A Patient's Life For One Year.

He and you both raise these difficult questions. He pointed out that Britain answers the above question, that is, sets the limit for extending life for a year at about $49,000.

So much more to say about this ... but Obama is on in a few minutes.