Don’t accept advice from physicians until they understand your values

Facing advanced cancer, who among us wouldn’t look to our oncologist for expert advice on whether another round of chemotherapy makes sense?  But do you know what your oncologist cares about, and can you be sure her recommendations map onto your own treatment preferences?

A recent study lead by Michael Kozminski (I was senior author) shows that American oncologists downplay the value of treatments that improve quality of life, compared to the value they place on life prolonging treatments.

In our study, we surveyed oncologists across the United States and presented them with hypothetical treatment scenarios, to see what value they placed on potential treatments for patients with advanced cancer.

In one scenario, we estimated how cost-effective a new life prolonging chemotherapy would need to be before oncologists prescribed it.  We described the chemotherapy as prolonging patients’ lives, but also explained that we had no other data on how it impacted quality of life.  On average, we found that oncologists would be willing to spend as much as $200,000 for every year of life gained by this new treatment.

In another scenario, we described a new chemotherapy that provided the same length of life as existing treatments, but that also substantially improved patients’ quality of life: “improving it from 40 to 90 on a 0-to-100 scale.”  According to standard theories of health economics, each year of life after receiving this treatment brings a half of a quality adjusted life year, or QALY.  When contemplating this life improving drug, however, oncologists weren’t willing to spend as generously.  Maybe $1000,000 for a QALY, but nowhere near the $200,000 they would spend for a QALY produced by a life-prolonging drug.

In cancer treatment, patients and doctors are often faced with the difficult job of balancing the desire for quantity versus quality of life.  Some treatments prolong life but at a major cost to quality of life, with miserable side effects, days and weeks spent in the hospital beds in oncology clinics rather than home with family and friends.  Every patient needs to decide what balance to strike between quantity and quality of life.  In doing so, most patients rely on advice from their oncologists.

Should they rely on this advice?

Medical recommendations often depend on non-medical judgments.  If your oncologist cares primarily about how long you live, and downplays the importance of your quality of life, she might recommend a treatment that doesn’t match your own values.

When getting any kind of medical advice, remember that the right decision often depends as much on your values as on the medical facts at hand.  Don’t seek or accept advice from a physician until you feel they, at a minimum, understand your values, such as how much you care about quantity versus quality of life.

If you ever face an illness forcing you to decide between living long or prospering, make sure it is your values that rule the day, not your doctor’s.

Peter Ubel is a physician and behavioral scientist who blogs at his self-titled site, Peter Ubel and can be reached on Twitter @PeterUbel.  He is the author of Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together.

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  • John Henry

    I can see expecting a physician to understand your wishes (not saying that they will have to concede to them always) but expecting them to “understand your values” just flies in the face of what should seem obvious. There are many value systems, and not so systematized “values” I find incomprehensible and nonsensical. I don’t always understand them. Medical doctors should not always be expected to appropriate those values or even sympathize with them. I still like to think medicine as a profession has values of its own that makes people of goodwill seek our advice, and consistency to those values is what those people–patients and their families–expect of us.

    • imnrgh

      If you are a doctor, I would never want to be treated by you. The arrogance of your comment is astounding.

  • Brenda Denzler

    QALY, QALY, QALY. I understand what MPH is. I understand what a light-year is. I understand what a gallon is. I understand what it means to survive for another six months as compared to another nine months or a year. I understand what “quality of life” is. It is a very individual notion that depends not only on whether or not a given side effect (or effects) occur with a given treatment, but also on what kind of resources I have, as an individual, to deal with those side effects. What I do not understand is this abstract thing they are calling a QALY. I have read of it numerous times in the many debates about the high cost of health care and, in particular, the great sums of money we spend on caring for cancer patients. I have read several attempts to explain what it is. I have yet to read an explanation of what this QALY thing is that makes any kind of sense to me. Or that is meaningful to me as a cancer patient. If my oncologist presents me with info about a treatment in terms of its QALY…I will not be able to hear what he or she is saying. What I will want to know is, how effective is this treatment likely to be at keeping me alive? If he or she says, “Treatment X has a QALY of 7, while Treatment Z has a QALY of 3″ — that will mean nothing to me. If he or she then says, “The higher (or lower) a QALY score for a treatment, the higher the quality of life it is going to give you for the time that it works for you” — that will mean little to me. What I will want to know is, “And how long is THAT likely to be?” BUT…if he or she says, “Treatment X will probably work for about six months. Treatment Z will probably work for 10 months, but it has serious side effects as compared to treatment X, and you may not feel very good for most of those 10 months.” That I can understand. I will then want to know what those anticiapted side effects are, and I will want to do my own soul-searching about whether I have what it takes to endure those side effects for the sake of a few extra months of drawing breath on this earth. I don’t know a pre-set QALY score in the world that can quantify that for me, as an individual cancer patient, in any meaningful way. As far as I can tell, QALY is not something that the erudite can really specify from their perches in their labs and medical school officers. QALY is something that, in the end, is a very personal calcuation made by people coping with cancer not from a safe distance and in the abstract, but in real-time. Up close and personal.

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