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A Piece of My Mind
December 3, 2019

Measuring Quality

Author Affiliations
  • 1Arc of Greater Cleveland, Cleveland, Ohio
  • 2Cleveland Clinic, Cleveland, Ohio
JAMA. 2019;322(21):2077-2078. doi:10.1001/jama.2019.18730

In the spring of his 17th year, our child Matthew—born with Down syndrome—started to change. Until then, he had had a very consistent personality—sociable, glad-handing in large groups, obsessed with Power Rangers and Goosebumps. The oldest of 4 brothers, he enjoyed acting out favorite scenes from movies and television shows and repeatedly cataloging his DVD collection.

Then the change happened. Almost overnight, it seemed, tectonic plates shifted in the subterrane of his personality. He became irritable, withdrawn, angry. We initially attributed this to teenage angst, playing out differently with Down syndrome. But we could no longer be in denial when, at his youngest brother’s first birthday party, he snapped, punching his mother in the face. Sadly, that was only the start of such episodes. Every month or so, Matthew would become physically aggressive. The episodes were unpredictable—often occurring at public places or restaurants. Sometimes he would hit one of us, sometimes he would punch walls. Often one of us would have to hold him down until he stopped “being the Hulk.” One episode so terrified his younger brother that he called 911. When the police officers arrived, we had to lie and say that we had things under control. (We did, but only at the moment and our hearts were bursting with anxiety that Matthew would snap any second while the police officers were there, and they would have to take him away.)

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    4 Comments for this article
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    The best lessons in medicine are, sadly, the most painful.
    Daniel Frank, MD | MedNorthwest
    No story is as powerful emotionally and intellectually as one that describes us making an egregious error that harms a patient. You get what you measure, but what if the thing you truly want can't be measured?
    CONFLICT OF INTEREST: None Reported
    Literature-Savvy
    Harald Aanning, MD | Retired General Surgeon
    The fact that this physician "cared about her patients enough to read" describes that essential career-long avocation so characteristic of a "quality physician."
    CONFLICT OF INTEREST: None Reported
    "Quality" Has Not Changed For Time Immemorial
    Mark Laporta, MD, FACP | Self-Employed
    "Not everything that can be counted counts, and not everything that counts can be counted." - William Bruce Cameron, “Informal Sociology: A Casual Introduction to Sociological Thinking”  (commonly misattributed to Albert Einstein)

    "When a complex system is codified, nuance is lost," Understanding Complexity, -- Scott E. Page, Ph.D. University of Michigan, 2019

    Having been in private practice since 1983 in multiple venues, circumstances, and locations, I've been reading the evaluation methods of a variety of administrative and pretend–authoritative bodies for what they consider quality.

    In the past few years the government has initiated so-called quality base payments.
    What that really means is they're telling us how to work, what to do, and how to make our process. Unfortunately that money-driven commandment has trickled down into corporate offices and also, most unfortunately, into physician extender operations. So, unfortunately they have become the standard of care.

    Years ago I read that physicians going into practice lose their taste for the work about ten years in. I tried not to believe it. I've tried to make decisions based on my own moral compass, real-life considerations, and principles of clinical pharmacology and pathophysiology, which I was told and still believe would see me through the entirety of my career.

    When I called a colleague a few years ago and complained about how often I'm being demanded to give unnecessary antibiotics and medications under the pretense of treatment his question was "you do know that you're shoveling shoeshine against the tide, right?" I said that I did know that. He said I thought so.

    It's only gotten worse and there's no end in sight. I recently worked five months in a major national institution, supposedly government-regulated, and found that administrative and bureaucratic concerns eclipsed clinical concerns. Patients are being treated by algorithms, and more algorithms are coming out every week under the pretense of policy and procedure. What that really means is that lesser and lesser trained personnel will be assigned the task of taking care of clinical matters as rote functions, and also spending an incredible amount of time recording the process and reporting the process, with complaints unheeded. Community– or group–based statistics are becoming the norm, with money behind them to back them up. And when the guideline misdirects care it's written off to the guideline, not to the care. There may never actually be a human breathing tribunal to decide who gets treatments and who does not, but really it's only a matter of time until the algorithms provide health care based on ages, probabilities, and financial statistics.

    Data-gathering does not see what I do. Hippocrates did not tell us to hurry up and treat. Hippocrates and the early physicians listened, really listened. That was the treatment. In a sense it was cognitive behavioral teamwork. Today we write prescriptions knowing full well that half the patients will not or cannot fill them and we do so because it's our job
    CONFLICT OF INTEREST: None Reported
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    A Very Touching Narrative
    KS Parthasarathy, MSc.PhD (Physics) | Former Secretary of the Atomic Energy Regulatory Board, India
    Thank you for sharing this touching narrative. "When we look back at the 7 years of a missed diagnosis and the burdens it placed on our growing family, it is with a mixture of sadness, anger, frustration, and guilt. We shudder at the thought of how many more years Matthew would have had to suffer with tortuous symptoms and repeated health care visits; how his weight gain from multiple psychiatric medications would have caused additional, unnecessary suffering; and how much his potential—already limited at birth—would have been further stolen if we had not found a truly high-quality physician." Those words reveal everything.

    We really miss family physicians now. "She cared about her patients enough to read the sparse literature on gastrointestinal and mood disorders in Down syndrome, even though this would never be an expected question in board certification tests." The reason for the successful diagnosis is obvious. This is certainly not a story of an accidental diagnosis. In the present instance, the physician was deeply empathetic; she observed her patient closely; looked at the drugs the patient was taking. She could find the possible association with celiac disease and Down Syndrome in light of her experience with a few patients with similar background. Such a flash discovery is possible only if the physician is dedicated to his/her field 24-7. Let me congratulate JAMA for publishing this news story. Though this is the case study of a single patient, it highlights the importance of careful observation, not adversely influenced by the tyranny of technology. The medical community must be vigilant against too objective a method of diagnosis; empirical evidence gathered by calm contemplation has inestimable value.
    CONFLICT OF INTEREST: None Reported
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