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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  • Jack Cain

    Dr. Johnson,

    You mention one of the hardest things to do, and one of the most common “wow, I never realized” topics. It is almost impossible to imagine chronic pain & suffering because it is so different from “I sprained my ankle once”. Also, how many times do you see doctors get sick and then respond with “wow, I never knew it was like that” statements? Doctors are human too.

    My biggest challenge right now is change for change’s sake. I’ve been on the same medication regimen for 7 years. Statistics say that two of the medications I take (horror of horrors!) morphine and clonazepam are dangerous when taken together. So, my PA (I can’t GET a doctor), in compliance with the best minds at the large teaching institution where my care is located want to reduce my morphine dose (Don’t worry! We’ll have a plan) and eliminate my clonazepam because on paper I am an OD risk.

    Really? You don’t stay on the same dose of morphine for 7 years without discipline and knowledge. I lay out my meds 30 days at a time and I take things like I am supposed to. The Stanford-trained doctor who worked with me to get the doses right made it clear that I was screwing myself if I didn’t – and I’ve given 7 years of proof.

    I was injured in a schoolbus rollover in my teens. I’m now 51. T6 – T9 look like hurricane Sandy just passed through. The .5 mg of clonazepam I take before I sleep stops the sharp muscle spasms that happen when I lie down. So, after 7 years why do they want to put me on Requip (I don’t have RLS or Parkinson’s) and decrease my dose of morphine?

    I’m not a doctor, but I’ve got a doctorate in pain – so maybe some of those “best minds” should listen to those of us who can present logical coordinates empirical evidence to go with the statistics. I’m no more an O.D. risk than a person without access to these medications because I *know* they can kill me and I pay attention.

    To quote a book & a couple of movies – “I’m not an animal!”

    • Alice Robertson

      This was a good appeal to the “having been there…done that” which is often missing from the conversation. It’s true patients are often not in the best frame of mind to make decisions. I am a mother with a daughter with cancer and I can share in hindsight the hamster on the wheel in my brain rarely gave me a moment’s rest. My heart outscreamed my mind….it has been difficult beyond words. Experience…that cruel taskmaster. Patient advocacy brings experienced patients to the table….thankfully, things are changing for patients….which is really why the whole system exists.

  • Kevin Cuccaro

    Very true and a difficult topic. The other part of the equation is patient expectations and, to be frank, lack of knowledge. I attempt to be very honest in my practice but I continually have to battle the “idea” of what can be done vs the “reality” of what is possible or reasonable.

    There is a disaster building in healthcare today–unhealthy lifestyles, unhealthy expectations & a society that does not want to talk about outcomes (death panel hysteria comes to mind) and costs.

    I fear it is only going to get worse unfortunately.

    • Alice Robertson

      I agreed with you until you identified “death panel hysteria”. I sometimes pause and reflect on the denial of the death panels who will most certainly make life and death decisions (it’s the only way to contain the costs. That’s the real reason the patient panels exist….to make cost decisions. Call them patient panels…or whatever label helps you feel better about their existence, but they will represent the Grim Reaper to a whole lot of people who are denied procedures). It’s very hard to look at someone you love and realize their life has a price tag on it. Even if it was their own doing that got them to that point (as you pointed out lifestyles). And, I agree, it will get worse….the government is not involved in the majority of healthcare dollars….so it will get worse for doctors and patients.

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