There is more to life than avoiding death

There is a broad consensus among healthcare policy wonks that the 800 pound gorilla in the healthcare cost debate is that a big chunk of the medical care we provide — some say as much as a third — does not help. It may even make things worse for patients.  Aside from the ethical issue of doing things that don’t help, and may hurt, this useless and dangerous care is expensive. If it could be identified in some objective way, and then reduced or even eliminated, there would be vast savings in our national healthcare bills. But can we do this?

The fundamental issue is determining what things are not helping. And that is often a subjective determination. For example, some people would want to have a surgical procedure that reduces their chronic pain by, say 10%; some people wouldn’t. Some people would want to take a pill that reduced a particular symptom they had even though it might lead to some potentially unpleasant side effects. Other people wouldn’t. It’s subjective and personal.

Enter what is called “adjusted quality of life measures,” or QALYs. The idea is to try to find some objective measure to make these decisions. But, as noted author and physician Jerome Groopman points out in a recent editorial in the New England Journal of Medicine, the way this has been done introduces serious bias and inaccuracies into the measure. The title of his essay is “There is more to life than death,” a title which underscores a key problem in QALY analysis as it is currently done.

The current QALY process asks people who are not ill to estimate what certain interventions would be worth to them in situations of increasing risk of death. I can see why the questions are done this way: people who are already sick are necessarily swayed in their opinions by that fact. Yet  the way QALY analysis is done essentially asks healthy people to imagine what the experience of disease is like.  That’s unrealistic, too. And using death (or avoiding it) as the principal determinant of value skews things in other ways. As Groupman says:

Basing decisions on the outcome of death ignores vital dimensions of life that are not easily quantified. There are real complexities and uncertainties that we all, patients and physicians alike, confront in weighing risk and benefit. Wrestling with these uncertainties requires nuanced and individualized judgment. It is neither ignorant nor irrational to question the wisdom of expert recommendations that are sweeping and generic. There is more to life than death.

I think we do need to continue to work for ways of deciding what, as a society, we’ll pay for and what we won’t. Everybody can’t have everything they want, or think they want. Yes, there is more to life than avoiding death.

Christopher Johnson is a pediatric intensive care physician and author of Your Critically Ill Child: Life and Death Choices Parents Must Face, How to Talk to Your Child’s Doctor: A Handbook for Parents, and How Your Child Heals: An Inside Look At Common Childhood Ailments.  He blogs at his self-titled site, Christopher Johnson, MD.

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