I'm not sure what the best short diagnostic label is, but it's a kind of pervasive hubris. We're the Greatest Country on Earth, whatever we do is right even it's wrong when "they" do it, and above all, we know no limits. Petroleum will never run out, the atmosphere and the oceans will absorb our waste forever, our empire will never decline, our resources are infinite and if you don't have everything you need, it can only be your own damn fault.
And oh yeah -- we will never die.
This is largely behind the aversion to even knowing, let alone making use of the information, about the relative value of medical interventions. Since our resources are infinite, it devalues human life even to ask the question. My colleague Peter Neumann (Neu-mannnnnnnnn!) and Milton Weinstein discuss the practical effect of this psychopathology in the new NEJM. (And yes, this is open access.)
They start by quoting from the health reform act:
The Patient-Centered Outcomes Research Institute . . . shall not develop or employ a dollars per quality adjusted life year (or similar measure that discounts the value of a life because of an individual’s disability) as a threshold to establish what type of health care is cost effective or recommended. The Secretary shall not utilize such an adjusted life year (or such a similar measure) as a threshold to determine coverage, reimbursement, or incentive programs under title XVIII.
They give various arguments as to why this is just silly, mostly centering on the very obvious fact that resources are, in fact, finite, and if we want to get the most benefit from our finite resources we need some way of knowing what gets us the most value for the money we spend. Go ahead and read it.
But I want to cast the argument in terms they don't make entirely explicit. QUALYs and similar measures don't really discount the value of a life because of the individual's disability. As I pointed out before, if they did, Stephen Hawking would indeed be dead, since the UKs NICE does indeed use QUALYs to authorize treatments by the National Health Service.
You need to understand how these are used in cost utility analysis. They are not applied to individuals to determine whether a given person will get a treatment. I.e., there are no death panels, or anything remotely similar. Rather, they are applied to particular treatments or preventive interventions, to compare their value with each other.
If I happen to have a disability or a chronic health problem, that is completely irrelevant to the question of whether I, as an individual, will be a candidate for a brain transplant or whatever the question may be. What is relevant is the average benefit to a population of people with the given disease who may receive a brain transplant vs., say, cognitive behavioral therapy. If my disability is unaffected by the procedure, it just doesn't enter into the equation. At all. If the intervention makes it worse, or potentially causes some new form of disability, I would want to know that before deciding whether to have it or not.
In fact, as Peter points out, in many situations very sick or disabled people stand to benefit the most from a treatment. If it doesn't extend their life at all, but just makes their lives better, then the only way you can show the value of the treatment is with QUALYs. By not adjusting life years for quality of disability, you actually end up depriving people with disabilities of potentially valuable treatments.
To take the example of Trig Palin, whose mother (?) frequently invokes him in this context, he is a baby. Therefore any medical intervention that benefits him will have a very high weight because he has a long life expectancy. That he has Down syndrome is completely irrelevant. Obviously any intervention that exacerbated his cognitive challenges would be worth less, but it ought to be, no? But of course we know that anything his mother says is a fortiori completely idiotic.
Now, we must concede, as does Peter, that any metric that compares the value of treatments will make treatments appear less valuable for people who have a short life expectancy, which includes the very old. If given the choice of spending the same scarce dollars to cure Trig of cancer vs. a 99 year old, well, how would you choose? But using QUALYs instead of raw years of life actually benefits older people, whose lives cannot be extended forever but whose quality of life may well be improvable.
Now if we could only find a way to get this common sense through the concrete skulls of the American public . . .