A World That Has Disappeared

Published April 3, 2023


The most recent issue of the New England Journal of Medicine features a moving account by neurologist Dr. Stephen Landy of his older brother David, who died in 2015. Over the course of decades, Stephen observed profound changes in his brother’s care, which he attributes to profound and entrenched shifts in the world of medicine.

Since infancy, David had contended with a severe form of cerebral palsy (CP), which Stephen attributes to medical errors made during David’s birth. It involved “slurred speech, a spastic arm, and an impaired natural swing at the hip and knee with leg circumduction.” Despite this, David bought his own ranch at the age of 24, by which time he had also earned a bachelor’s degree and had learned to swim and drive. All this was hard won; as a family, the Landys were absolutely committed to David’s independence. David’s mother, for example, ordered custom-made shirts that David could button, as well as shoes without laces. In this, they were buoyed by a devoted team of doctors and teachers.

Years later, when Stephen encountered young patients with conditions comparable to David’s, as he writes, “there was no comparison.” These younger patients had come of age in a different time, and their abilities were far below David’s. As Stephen writes, “

David’s training and education — he had attended a school for disabled children — had occurred between his birth in 1952 and the mid-1970s. He entered the world when Harry Truman was still president and the first pacemakers were reaching the human heart. More to the point, it was a world where physicians had time to spend with patients and their families. There was more time allowed for listening, for exchanging diagnostic and treatment ideas, for establishing synaptic-strength connections. The modern tethers of clock watching and computer demands did not exist.

Stephen goes on:

By the time David needed the medical community most, when his depression had turned into psychosis and he tried to end his own life, that medical world had disappeared. Instead, my brother had five specialists tending to him, who didn’t consult with one another, whose care was often at cross purposes. They didn’t realize that the prescribed antipsychotic was causing tardive dyskinesia, which exacerbated his CP.

In that case, Stephen intervened. Most of the time, however, he was reluctant to interfere with David’s clinicians. He blames himself for his brother’s decline: “By the time he died in 2015,” Stephen concludes, “David was unrecognizable to anyone who had known him in his 20s.”

In a previous post on the rise of the hospitalist model of care, I noted some of the risks inherent in a “committee model” of healthcare, in which service is fragmented and no one person is responsible for patient outcomes. This bureaucratization of care disrupts the patient-physician relationship and leads to obviously harmful decisions, such as those noted by Stephen Landy. It can also lead to critical delays in decision making. Either way, when no one is directly accountable for patient care, patients suffer in ways that are both immediately apparent and difficult to quantify. Doctors also suffer; they can no longer accumulate the sort of vital medical knowledge that comes via direct, personal care over the course of years.

This evolution is further illustrated by Stephen, whose essay is worth reading in full:

For most of his life, my brother had the same physician, who exchanged ideas with our parents about David’s treatment and progression toward independence. For decades, that exchange of ideas was recorded by our mother, who took a notebook to every doctor’s appointment. No one involved with David’s care had much clinical guidance to help them. Peer-reviewed articles on CP were essentially nonexistent at the time. A compilation of papers on spastic hemiplegic CP published in 1952 did have some useful medical and therapeutic information, but according to a reviewer, it did not have “unity of viewpoint or homogeneity in quality of contexts.” Even by the time I entered residency in 1983, the list of titles had barely grown.

Stephen personally observed how the practice of medicine suffers when divorced from prolonged, careful, particular observation of particular patients.

As my medical education became more extensive, I stopped seeing David just as a brother and began seeing him more as a patient. I was fascinated by his neurologic issues. I studied his gait, observed his movement disorders. I listened to his dysarthric, slow, prosodically impaired speech and wondered about where the pathology localized in his brain. I reviewed his MRIs, but they looked unremarkable to me. Nearly 30 years after I had completed my residency, a 2011 study reported that 18.8% of children with CP had nonspecific radiologic findings, and 13.1% had results considered normal. I became concerned that David’s electronic health records, coding requirements, and prior-authorization requirements were constraining his physicians’ communications, resulting in his fragmented care. (Emphasis added.)

By the end, David had become totally dependent on his family, a fate they had spent years working to avoid. And while Stephen assumes some of the blame, it is obvious that he saved his brother’s life on at least one occasion. Most patients in the U.S. don’t count attentive physicians among their close family. And the medical system that had successfully supported David for much of his life no longer exists.

Devorah Goldman is EPPC’s Tikvah Visiting Fellow. Her work focuses primarily on medical policy, culture, and public bioethics.

Devorah Goldman is EPPC’s Tikvah Visiting Fellow. Her work focuses primarily on medical policy, culture, and public bioethics.

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