The current debate over health care reform has sparked another round of debate over whether, and how, disability should be taken into account when making health care decisions.
Since it would be unreasonable to expect the government to pay for every medical intervention that could conceivably improve a patient’s health, most serious proposals involve some metric for determining when an intervention is sufficiently ‘worth it’ to justify the expenditure (an aside: I find it rather irksome that this gets referred to as “rationing.” Unlike true cases of rationing, no serious proposals involve giving the government exclusive control over the supply of medical care. Moreover, people already don’t always have access to the medical care they would like to have; if federal health “rationing” is undesirable, then, it can’t simply be because the government makes decisions on which treatments to pay for, but rather whether people will in fact have fewer options after the federal health plan is passed).
There’s no end of debate, though, over what criteria the government should use in deciding which treatments to fund. We may agree that lifesaving treatments are more important than more minor interventions, but even then there seems to be a hierarchy among the types of lifesaving treatment: an intervention that extends someone’s life for three weeks is not as “worth it” as one that extends another person’s life for eight years. Extending a person’s life for eight years may, in turn, be less “worth it” if that person is unconscious for almost all of that time.
Enter ethicist Peter Singer and his proposal to revive the QALY, or Quality Adjusted Life Year. It’s a simple concept: take the number of years a treatment is likely to add to someone’s life, and multiply it by their expected “quality of life” during that additional time. But, as the disability community has pointed out, when disability is factored into the quality of a patient’s life for QALY purposes, you get a system in which a treatment that’s near the cutoff – say, a new, expensive form of heart surgery – may be offered to able-bodied patients but denied to patients with serious disabilities. This is why the Bush administration declined an Oregon Medicaid waiver proposal that incorporated QALY system, arguing that it violated the Americans with Disabilities Act.
This time around, Singer at least acknowledges that determining the extent to which a disability decreases one’s quality of life is pretty difficult, especially considering that able-bodied people consistently overestimate how unhappy they would be if they became chronically disabled. So this time, he’s got a brilliant solution guaranteed to endear him to the disability rights crowd: just ask disabled people how many years of their life they’d give in order to be nondisabled! He even acknowledges that maybe – just maybe – people with quadriplegia wouldn’t want to give up a single year of their life in order to become non-quadriplegic, in which case quadriplegia should not be taken into account for QALY calculation purposes. But then again, he warns, in that case, nobody would fund any medical interventions to prevent or cure such disabilities, because clearly they don’t have much of an effect on patients’ quality of life. Quite the dilemma. But a false one.
First off, Stephen Drake of Not Dead Yet has already pointed out that, in fact, people with disabilities aren’t as interested in funding for ‘cures’ for disability as Singer seems to assume they are in this article. That point alone, though, doesn’t fully expose the flaw in Singer’s reasoning. If we were to buy Singer’s implicit assumption – that we should spend money on prevention or cure of a physical condition if, and to the extent that, people with that condition would be willing to give up some amount of their future life in order to be free of it – then saying “yeah, people are overly obsessed with prevention and cure of disability” would imply that people with disabilities would be willing to give up a little of their future lives to cure their disability, just not as much as most nondisabled people would expect. Clearly that’s not what Drake would want us to conclude (in fact, he points out right afterward that the whole framework is problematic).
So what is wrong with this argument, other than its apparent overestimation of how much it actually sucks to have a disability?
First, let’s note that only a philosopher (that is, someone unaccustomed to actually implementing social plans) could have come up with as impractical a proposal as “let’s just ask the disabled people how much worse their lives are.” Suppose such a plan is in fact adopted. The first thing the Department of Health and Human Services would have to do, then, in order to make a useful QALY guide is solicit information from people with disabilities on how much worse off they are. My guess is that even if a significant number of people with quadriplegia would be willing to give a year or so of future life in order to be able to walk, not many of them are going to think to themselves “hey, let me volunteer that information to HHS so that they can take that into account when deciding whether it’s worth it to pay for my health care.”
Singer could counter that this perverse incentive will be offset by the fact that, if people say that the quality of their lives isn’t changed at all by their quadriplegia, then HHS won’t spend money for prevention or cure of it either. This, of course, ignores the fact that, like many disabilities, quadriplegia itself lowers life expectancy, so an intervention that prevented a healthy person from becoming quadriplegic would still be potentially worth it under a QALY analysis.
Even if it didn’t, though, it would not be the only physical condition that people might consider as having some bearing on quality of life despite the fact that people with the condition don’t think their lives are worth less to them as a result of it. Suppose Amy contracts breast cancer, and due to late detection, needs a double mastectomy. This makes her unhappy, so she dedicates herself to volunteering and fundraising, not only for early screening programs, but also for better medical research to find safe alternatives tototal mastectomies. This seems like a perfectly rational, and common, response. But it would be nonsensical to infer from Amy’s belief that such screenings are worth the money that she would give up any appreciable portion of her life in order to have her breasts back. In fact, the very fact that she consented to a mastectomy in order to extend her life seems to negate that inference.
In fact, there are plenty of things that we consider important enough to spend significant money and resources on, that we nevertheless wouldn’t take into account when determining whether it’s worth it to extend someone’s life. To use an obvious example, look at poverty: people in poverty clearly have a diminished quality of life, and many people justifiably spend a lot of time campaigning against it. But most people, I imagine, would not give up years of their life in order to not live in poverty (or at least wouldn’t say they would in response to a direct question about it), and clearly Singer doesn’t think that poverty should be taken into account when deciding who gets health care treatment: in fact, the whole point of his health care rationing plan seems to be an attempt to take people’s economic resources out of the health care decisionmaking process. Similarly, we all may agree that having been abused as a child tends to make one’s adult life less pleasant and that preventing child abuse is a good idea, but would we really take that into consideration when deciding whether an abuse survivor gets heart medication?
What is it about disability, then, that makes life so qualitatively less pleasant that it’s worth considering when deciding who gets medical treatment even though other disadvantages aren’t? Perhaps it’s because Singer sees disability as a medical issue, and therefore as the same “type” of problem as the medical conditions for which a patient is seeking treatment. Even then, though, I could think of plenty of physical conditions that would make my life less pleasant but that Singer probably wouldn’t want to consider in determining whether I get lifesaving treatment. Infertility, for example. Or migraines. Or chronic acne. Or an allergy to soybeans. Or a crooked nose. I could even prove that some people would voluntarily shorten their lives in order to not have to deal with them – people may opt, for example, for infertility treatment that involves general anesthesia, which has a small chance of causing death. What is the qualitative difference, in Singer’s mind, between a person with one of these conditions and a person with a disability? It can’t just be a matter of degree, or else these things would be considered in Singer’s hypothetical system, just not to a very great extent.
My guess is that there is none – that Singer’s theory is, in fact, simply internally inconsistent. Sadly, even rather smart people seem overly willing to consider discriminatory policies “rational” so long as the groups that are disadvantaged are the ones we’re trained to expect not too fare too well in the first place.