I decided to read this book review because of a brief description (“A father describes, and rages at, the loss of his teenage son.) in an email. Then I found this:
Weber’s story becomes more spirited and urgent when Damon’s health begins to fail more seriously, and his father is forced to locate his true enemy: the received wisdom and arrogance of the American medical establishment.
Weber père . . . admits he doesn’t trust “any single voice on Damon’s illness.” And he’s wise not to, as he discovers in short order that health care for his son is first and foremost a business, and that surgeons frequently talk out of their hats.
Heart transplants represent big money for hospitals: at half a million dollars each, 20 pediatric transplant operations a year make a significant contribution to the finances of New York-Presbyterian Hospital/Columbia University Medical Center, where Damon’s surgery is eventually performed. Hospitals compete to attract patients (every transplant center Weber speaks with wants to perform his son’s operation) and stringently guard their surgical outcome data, as Weber discovers when he tries to find out if the blithe assurances of the Columbia transplant team are scientifically valid. He quickly realizes “each hospital is a fiefdom.”
Worse still, the medical barons who run the fiefs care as much [i.e., as little] for protocol as they do for patients. Over Christmas of 2004, Damon is casually “listed” as a potential heart recipient — meaning he has to be ready to receive a new heart at a moment’s notice — without his father’s knowledge. His doctors then disappear for a week and more.
Before Weber can truly blow his stack, he discovers Damon’s doctors have also misclassified his son’s transplant status as less urgent than it is. Dad bulls [sic] them into fixing the problem, and 11 days later, a heart is found for Damon. The transplant in turn initiates a tragic cascade of doctor errors so egregious that Weber eventually sues both the medical director of pediatric heart transplants at New York-Presbyterian Columbia hospital and the hospital itself for malpractice. (Three years into the lawsuit, the medical director claimed Damon’s post-op records couldn’t be located.) All this happens at one of the country’s best heart transplant centers.
“Passively relying on the medical establishment and trusting them to manage my son’s care in his best interest is not . . . a luxury I have allowed myself,” Weber writes, with good reason.
Maybe I should start a series called “The Culture of Surgeons”. Entry 1: Eileen Consorti, a Berkeley surgeon who told me I should have surgery for a hernia I could not detect. Entry 2: Martin Burton, an Oxford ear nose and throat surgeon whose Cochran Review about the pros and cons of tonsillectomy failed to consider that tonsils are part of the immune system.