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Do Patients Know Best? Does Anyone?

by Eben Harrell, executive director, Health Leadership Forum

Recent conflicting advice from medical authorities on issues such as the widespread prescription of statins, the efficacy of vitamin D supplementation, and the utility of various cancer screenings (such as PSA tests and mammograms) has created a noisy environment often leaving patients confused when choosing a medical intervention.

Adding to the problem is the lack of robust, integrated data about outcomes — something that would only be possible with seamless data sharing and patient tracking across the care continuum, which isn’t yet a reality.

But that’s not what Harvard Medical School faculty member Jerome Groopman and his physician-wife Pamela Hartzband, who is also on the faculty at Harvard, are most concerned about.

In a discussion at Spotlight: Health, “When Experts Disagree: The Art of Medical Decision-Making,” the pair discussed the swirl of uncertainty that surrounds decisions over which medical interventions are appropriate for a given patient. Who should have the ultimate authority to determine treatment courses? Advisory bodies? Leaders of health systems and hospital administrators? Individual doctors? Patients?

But Groopman and Hartzband took the theme of uncertainty further by arguing that measurements around medical utility will always be imperfect. Drawing heavily on research from the psychologist Daniel Kahneman, the pair argued that people’s inability to accurately forecast their future emotional states makes measuring the effectiveness of an intervention a fool’s errand — even if exhaustive evidence about medical outcomes existed.

As an example, the pair cited research showing that as many as 50% of people who prepare a living will change their decisions about end-of-life care once they become ill.

They also discussed how people with severe physical disabilities often report high levels of life-satisfaction, even though able-bodied people have a severe aversion to disabilities. Groopman quoted Kahneman’s provocative statement that “doctors measuring medical utility is like physicists in the 19th century attempting to measure the ether when the ether didn’t exist.”

As a result, the pair argued passionately against cost-effectiveness reviews as a health care policy tool on the grounds that medical decisions should never be made on a collective basis. They criticized Britain’s National Health Service (NHS) for using metrics such as “quality-adjusted life years” to determine which treatments and drugs to fund on the grounds that measuring “quality” is extremely fickle and difficult to predict for different individuals.

Instead, they suggested a binary framework for physicians to identify individual preferences for medical care: do patients favor naturalism or technology? Are they maximalist or minimalist when it comes to medical intervention? Are they believers in modern medicine or doubters? The pair said these distinctions can help physicians guide their patients to the appropriate choice — even if the ultimate utility for a given patient remains unknowable. Hartzband paraphrased the famous 19th century Canadian physician William Osler who said “listen to patient, because if you know how to listen the patient will have the answer.”

You can continue reading this post on the Health Leadership Forum.

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