by Doron Weber
Each year, over 200,000 people die in hospitals from preventable medical errors, making it the third leading cause of death in the United States.
My son Damon was one of them. He died eight years ago at age 16-1/2.
Last year, Simon & Schuster published Immortal Bird, my memoir about Damon. My primary aim was to resurrect my beloved first-born and to celebrate his gorgeous character and his remarkable life. But I also hoped that people might learn from our experience with the medical system and what went wrong.
Recently when the paperback came out, I received an unexpected email from a physician who had helped me in the long, ultimately losing battle to manage Damon’s illness.
“Immortal Bird,” Dr. Alvin Chin, Professor of Pediatric Cardiology at Children’s Hospital of Philadelphia, wrote me, “is the lead topic in a monthly newsletter that goes to all pediatric cardiologists.”
Considering that I still have a lawsuit pending against the hospital where Damon died, alleging that certain physicians fatally mismanaged his care, I was hardly expecting the medical establishment to embrace my book.
Yet in “A Cautionary Tale for Pediatric Cardiologists,” which appears on the front page of Congenital Cardiology Today, Dr. John Moore, Professor of Pediatrics at the University of California, San Diego and Director of Cardiology at Rady Children's Hospital, writes that Immortal Bird could serve “as an excellent teaching tool for fellows and staff,” particularly in regard to “communication between patients and doctors and between pediatric cardiologists and cardiac surgeons.”
Moore describes purchasing three dozen copies of the book and distributing them to each fellow, cardiologist, surgeon, and nurse practitioner in his program. Then he scheduled both medical and behavioral sessions as part of a regular educational series two months later, leaving everyone time to read the book.
During the discussions that ensued, Moore’s group agreed they needed to develop a common algorithm for surveillance and maintenance care of patients like Damon, who was born with a single ventricle heart later repaired by a surgical procedure known as Fontan. Amazingly, the medical professionals had never compared notes about their individual approaches to treatment of such cases prior to the meetings called by Moore.
“We noted that among eleven cardiologists, we had eleven slightly different approaches toward things like monitoring serum albumin and liver function, as well as chronic anticoagulation, use of diuretics and afterload therapy,” Moore writes “There was a consensus among us that a more consistent approach could improve patient care for a variety of reasons.”
As part of his program Moore extracted many questions raised by Damon’s case that I’d chronicled in my book which he presented for discussion:
- “Are there sufficient inpatient cardiology beds available, such that patients like Damon can be properly accommodated?” After Damon received a successful heart transplant and was discharged, he had to be readmitted because of an untreated infection. However, there were no beds when we arrived at the hospital, so he spent a day in the ER, a dangerous place for an immune compromised patient with a fever.
- “Who provides strategic direction of care when the patient is sick and in the hospital? Who provides the key communications with the family and the patient?” A big problem was that physicians on Damon’s case weren’t communicating effectively with one another or with us.
- “Is critical information exchanged well among practitioners (things like EBV mismatch between donor and recipient)?” It turns out Damon’s heart donor had Epstein Barr Virus, a fact the medical director may not have communicated effectively to others on Damon’s case, which caused the infection that led to Damon’s death.
- How can a hospital ‘lose’ important patient records?” This is an inexplicable and disturbing question. Damon’s key records remain “lost” according to the hospital.
Moore hosted “behavioral sessions” in the hospital, using scenes and quotes from Immortal Bird to encourage discussion. He had never tried this approach before but “after just a few quotes, multiple hands went up…nearly everyone had opinions they wanted to express and discuss.” Moore also noted that Damon’s case specifics quickly turned “to our patients and our program at Rady Children’s Hospital.”
Encouraged by the large turnout and the animated response, Moore concluded that while “Immortal Bird is a powerful personal tale of the loss of a child…it also provides important lessons for the congenital cardiology community. Damon’s story should inspire us to strive for the best possible communications with families and with one another. Review and consideration of the medical issues raised in the book may lead to improvements in the way we care for and treat our patients. I highly recommend that all congenital cardiologists and cardiac surgeons read the book.”
As the book’s author—and the father of the boy whose tragic loss it commemorates—I am heartened that a group of medical professionals chose to use my literary memoir as a study guide for improving the way they care for and communicate with patients. I do not know of too many professions capable of this level of voluntary self-examination and systematic scrutiny, the very qualities of accountability that seemed so absent in my son’s case. It reinforces my desire to believe that the norms and the ethics of this profession are indeed high, and that what my son and our family experienced was a breakdown in traditional and routine standards of care and responsibility.
However, there is still a long way to go, both regarding my son’s case—Moore lacks key facts and finds it understandably difficult to accept that a fellow physician may have erred repeatedly—and regarding the broader issue of medical errors. Incredibly, with hospital medical errors ranking the third leading cause of death in the United States and accounting for nearly a quarter of a million patient deaths each year, such preventable medical errors—mistakes that need not and should not occur—claim more lives in America each year than highway accidents, breast cancer, or AIDS.
While Damon was a unique and extraordinary individual, his case was not. As these statistics and Dr. Moore’s efforts suggest, countless people suffer similar tragedies every year without understanding how the system failed them or having the willfulness and the luck to get their stories heard as I did.
And Dr. Moore himself is honest enough to admit that “[i]t’s too early to tell whether the book will stimulate positive changes in us or our program. Hallway discussions are continuing….”
So should public vigilance and demands for accountability and reform continue from this noble but deeply flawed profession and the broken system in which it currently operates.
Doron Weber is the author of Immortal Bird: A Family Memoir, selected as one of the Fifty Notable Books of 2012 by the Washington Post and released in paperback by Simon & Schuster in February 2013.