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 . . .
3 comments:
hard to get a rational, fact-based idea across when there is so much deliberate obfuscation from wackos and those with a financial stake in general ignorance.
Hope for Switzerland. (Not right on topic but I hoped C would be interested.)
Today, a new ‘initiative’ for single payer springs off. By next week, signature collection will have begun, and that will surely succeed, > go to referendum. It will give great leeway to the cantons, so it is single payer by canton, within a federal frame. I’ve lost count of how many times we have voted on health insurance, there is a saying around here, 3rd time lucky (this happened for federal, national, maternity insurance, for example - maternity is not an illness!) Will it pass? I think not, but it stands a chance for a very good score....We are steadily moving in the right direction.
One of the instigators of this initiative (he holds an important position, as one of the directors of the body who oversees all this mess, and has an impeccable reputation) has launched a simultaneous attack on private clinics!
These are straight money-making enterprises (often in the hands of foreign corporations) and in ways that are too complex to go into here, benefit from residents (those who pay their health insurance), taxpayer/state largesse (e.g. direct funding for infrastructure, tax breaks, ambulance service, etc.) while not being bound to some of the laws, regulations, etc. that apply in the public sector.
For ex. the public sector pays employees on a fixed, transparent, scale, negotiated by the professional branches + the state. A heart surgeon, a hospital director, a nurse of some category, etc. earn just so much. Private clinics need not, thus do not adhere to these signed ‘conventions’ - contracts - though they usually pay the standard for lower-level employees (concierge, cleaner, receptionist, nurse aide, cook and so on) and may even pay more, or have different pay-benefit structures that suit some people (bonuses, vacations, part time, etc.) The whole private health sector is hysterical with worry today, in the press and on the radio waves...ha ha ha.
CH is the most *libéral* - read ‘free market’, individualist, libertarian, etc. - structure in Europe in some ways: no minimum wage, little price controls, everyone has guns, illegal immigrants are exploited, and for ex. it was just recently (under pressure from abroad) that teen prostitution was declared illegal, meaning that girls and boys under 18 can no longer sell their bodies legally. Anyone can be fired ... And yet, health care is a very serious preoccupation, solidarity and and ‘proper balance’ are a national preoccupation.
The doctors have also launched an initiative. This too will for sure > referendum. They are asking for just one thing: complete and total separation between the mandatory basic health care insurance pack (which covers everything ‘usual’) and extra, complementary insurance (e.g. for private clinics, consults out of the country, precious body parts like pianist fingers, mud baths and spas, dental, orthodontia, prolonged psychotherapy for the non-mad, nose jobs, odd medications, mary-jane on demand, loss of income, etc. etc.) In effect, they are saying, the basic pack has to be separated out so that...we can actually figure out what is going on, and can take some actions on it...
One initiative mentions ‘fierce, relentless competition’, the other ‘desperate, unhealthy competition’ (my trans) between insurance cos, and its terrible, horrendous, cost.
The two initiatives are so far considered ‘not incompatible’.
Ana
Sounds like the docs have a good point there.
We use the word "liberal" to mean something like support for activist government to promote social welfare, reduce inequality and protect liberties against coercive private power; what you are talking about in the land of holey cheese is what we call "libertarianism," which is basic distrust of government.
The meaning of these terms is often confusing because they originate in one historical context and evolve over time.
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