WHO HEALTH REPORT Japan health systems ranked best (???)

[Jim Westrich]

Recently I read Peter Ubel, M. D.'s book *Pricing Life* (MIT Press, 
2000).  He does a good job explaining many of the thorny issues surrounding 
health evaluation (mostly from a clinical point of view).  He addresses 
issues that many people have raised about the abhorrent (and also not in 
accordance with most people's views) practice of valuing the lives of 
people with disabilities as some fraction of non-disabled people.  As a 
good liberal he uses "as an example" that a person with paraplegia life is 
0.8 with 1 the norm.  After noting objections from some academic critics of 
QALY's he concludes that a person with a disability MUST be evaluated as 
less than normal because making them equal would "force us to conclude that 
curing paraplegia has no medical benefit."

This is a very common logical/moral problem as I see it.  Really clever 
people create models in order to help them make sense of the world.  No 
problem with that, things are complicated and models bring clarity and 
direction to our thinking. The only problem is that at some point the 
clever person becomes boxed in by their models and can't see past 
them.  They start viewing the world as if the model were real 
(representation fallacy).  Dr. Ubel not only misses the possibility that 
the subjective experience of being disabled is "normal" (and hence utility 
of 1), he forces some problematic objective measure on them and finds that 
they are necessarily less than normal.  Dr. Ubel is probably a very 
empathetic person but his model has turned him into a monster.  It would be 
a lot smarter for him to acknowledge it is often the case with chronic 
illness, people are who they are and that is normal.  Now, if they want a 
cure fine, but if a person with some functional limit sees themself as 
normal then the outcome of "curing" them is equivalent to changing some 
cosmetic aspect of another person.

At 06:19 PM 6/22/00, you wrote:


>I did not mean to imply that the demeaning of disabled is the entire 
>picture but
>rather to point out that when the medical establishment (and bioethicists) 
>set up
>quality of life standards that assume quality of life can be quantified 
>and that
>disabled rank at the bottom because of an impairment as in the WHO DALE 
>example,
>it is easier to justify NOT making expenditures to impaired people because 
>their
>lives are considered "less than" a non disabled persons.

Peace,

Jim

"Able is the ultimate post-disability construct."

--Stephen J. Raphael, more wag than dog

"Compromise used to mean that the middle of the road was a safe and 
reasonable place to be. Now it seems to mean acquiesence in getting run 
over there."

--Stephen J. Raphael,  more myth than legend 
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