• There is more to this issue than life and death

    The recent NEJM Perspectives piece by Pamela Hartzband and Jerome Groopman is about how to interpret expert judgement regarding the PSA test, as well as the methods upon which it is based. It is superb and ungated. Go read the whole thing.

    It ends,

    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.

    Agreed. But health care services of (expert-decreed) uncertain value don’t grow on trees any more than do unambiguously valuable ones. Who will pay for them?

    @afrakt

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    • Thank you for posting this excellent article.

      Jerry Groopman MD and his wife Pamela Hartzband MD are first and foremost superb clinicians – in addition to their many other talents. Jerry and I were classmates at Columbia University College of Physicians & Surgeons ’76, where patient-centered care is an honored 245 year tradition. Our patients knew it then and know it now. Even when the odds are insurmountable, you search your experience and faith to go the extra mile. It is the story of Job – it is our response to Job to reach out and help that is what matters. It means that we must study and transcend evolving epidemiologic data.

      When I asked top epidemiologists at UC Irvine Medical Center what the implications are for routine genetic intrauterine screenings for cystic fibrosis and the many resulting elective abortions. Their answer was “it means nothing”. They stated that there was no ramification whatsoever in the context of the larger demographics – it was “insignificant.’

      The Groopmans write: “Basing decisions on the outcome of death ignores vital dimensions of life that are not easily quantified.”

      My boy, Andy, had cystic fibrosis. I’ve never felt closer to God than I did during the years when Andy didn’t have enough functioning tissue left to explain why he was still alive.

      To Pam & Jerry. . . and all in my profession who carefully study epidemiologic data and painstakingly process it through the prism with dimensions that sanctify life. . .carry on the precious gift we were given.to bring patient-centered clinical medicine to all our patients.

      To Andy. . . .you are in our hearts and souls forever. Thank you for sanctifying every day of our lives.

      Dorothy Calabrese MD
      Allergy & Immunology, San Clemente, CA

    • In their full NEJM Perspectives piece, Hartzband and Groopman ask “How do we balance the possibility of a later life with advanced prostate cancer marked by bone pain, pathologic fractures, and urinary obstruction against the more immediate symptoms of incontinence and impotence that often follow surgical or radiation treatment of early-stage prostate cancer?”

      Has it been established that PSA testing reduces the incidence of advanced prostate cancer marked by bone pain, pathologic fractures, and urinary obstruction? Not to my knowledge. I agree that public health policy should be based on criteria beyond mortality but that’s quite a different matter than arguing that outcome/effectiveness research has no role to play in testing or treatment policies.

      In Austin’s quote from the same article, Hartzband and Groopman assert “Wrestling with these uncertainties requires nuanced and individualized judgment.” I’m afraid that individualized judgement is too often over-influenced by anecdote, emotion, and conscious or unconscious bias.

    • Adam properly articulates the wranglings that physicians and patients wrestle with in every significant medical encounter – : the role of “anecdote, emotion, and conscious or unconscious bias.”

      1. Doctor: Latin: docere – to show, teach, cause to know, A doctor completes 7 + years of rigorous academic training after undergraduate school with hundreds of physician teachers and thousands of patients. The roles of anecdote, emotion and bias are as important a consideration in that training as everything codified in the current “standard of care.” Some docs, like Jerry Groopman MD, a top Harvard med professor, teach how to approach and discuss anecdote, emotion and bias. . . and no one is better at that type of critical Socratic thinking than Jerry. This is the ethical art of medicine.

      2. Each physician should bring their unique values to their profession. This can be confused with anecdote, emotion and bias. as an example. . . Jerry and Pam are devout Jews. . . I am a devout Christian. Judeo-Christian tradition sanctifies life. “And whoever saves a life, it is considered as if he saved an entire world.” The underlying belief is that each patient must receive our best efforts. . . which reflects both a bias and emotion patients prefer their physician has in choosing them as their physician.

      3. Choices are always made by the patient – except in emergencies where consent is impossible. Competent adults are educated, but their informed consent choices at each stage reflect the realities of anecdote, emotion, and bias. Decisions for minors and patients who are not competent are made by by families or judges who are intrinsically influenced by anecdote, emotion and bias. in a free society, patients make their own decisions and live with the consequences of their own decisions.

      4. My experience with our journey with my son Andy to the top of the lung transplant list was replete with biases and emotions. Accurate data on lung tx for cystic fibrosis wasn’t available yet and wouldn’t matter because the state of the art was changing so rapidly. Published peer-reviewed single case reports were very important, but considered anecdotal by many. Did anecdote, emotion or bias really matter?

      What I remember most was how serious illness, suffering and the gravity of the inevitable decision forged a bond of love that truly transcended anything possible in everyday life.

      Adam’s concerns are all our concerns. Reminding us of them is welcome opportunity to revisit them.

      Dorothy Calabrese MD, San Clemente, CA

    • I find this article rather frustrating to read. The answer to most of the authors’ criticisms is that interventions should be evaluated using high-quality cost-effectiveness analysis as well as common sense value-based judgements.

      High-quality cost-effectiveness analysis incorporates outcomes besides mortality. Yes, it is very difficult to put utility values on these outcomes. Yes, it is unfortunate that risk aversion is not directly addressed in the models. Yes, it is unfortunate that utility valuation involves considering health states that people have yet to experience. However, at the end of the day, we have to assign value to these outcomes in some manner. The authors should be calling for the field to be standardized and elevated rather than done away with.

      What should definitely NOT determine policy are misleading statements like “Epidemiologic data show a 75% decrease in the number of men presenting with advanced prostate cancer since the introduction of PSA screening”. Of course, no one is arguing that PSA test don’t catch prostate cancer. The problem is that it catches a lot of things that aren’t prostate cancer…