I have probably received more letters about the problems with modern medical care than any other subject in Immortal Bird. The two letters below are interesting because they come from relatively “privileged” readers: one was a medical student who left the field to become a scientist because he was so disenchanted with the practice of medicine; the second is a well-connected person for whom cost and access was not an issue but who nevertheless felt mistreated by the system.
I just finished your book. Let me first say that I am so sorry for all that has happened to you and your family, and that I think your book truly honors Damon. I also wanted to let you know that what you wrote rang absolutely true to my own experience; the culture of medicine is profoundly damaged, and most of the time, for lots and lots of inexcusable reasons, no one minds the store at all. Maybe at some point I can have a conversation with you and tell you why I don’t practice medicine, but it mostly has to do with the intersection of my horrible personal experience xxxx and the near total lack of responsibility I observed at some of the best hospitals in the world while I was in medical school. I am not exaggerating when I say that I loved — really loved — the practice of medicine, but couldn’t forgive myself if I became part of the problem, and so I left for the bench. Your book reveals an unappreciated and profound truth, and reminded me of how lucky I have been.
I finished your book over the weekend. The story is heartbreaking, of course, but even on the page Damon’s spirit is infectious.
Without drawing wrong or tone-deaf comparisons – given that in xxx case there was ultimately no other possible outcome and he had the time to live a substantial and exciting life – your dealings with doctors and hospitals brings back so many memories, painful and resentful: the wrong meds, the professional who don’t bother to look at the charts, the disinterested docs, the carelessness (both with people and care), the mistakes and the few bright spots, the first-rate nurses among them. If we all have these experiences – and we’re privileged, connected and aggressive! – why do we seem so unable to fix this very broken system?
To be fair, I also have observed hopeful signs, including the recent article in Congenital Cardiology Today which recommended that all pediatric cardiologists and cardiac surgeons read Immortal Bird and hold discussions and study groups to discuss the issues raised. I’m impressed that physicians have heeded Damon’s story and are using it as a basis for self-examination and comparing current practice and treatment of patients with his condition. I don’t know too many professions capable of this level of self-scrutiny, and the questions they raise are mostly the right ones. But the answers to those questions matter too, and this is where the jury is still out. For example, while communication is a big part of the problem and many things could be done to facilitate better communication between doctors and patients, correct medical treatment is the sine qua non of medical care and no amount of communication can fix a fatal medical error. The medical system needs to recognize when it has made a mistake and to come clean about it so it can improve the system, correct erroneous standards and practices and hold negligent and malpracticing physicans accountable.
As Dr. John Morore writes at the end of his article about Immortal Bird, “A Cautionary Tale for Pediatric Cardiologists”:
“It’s too early to tell whether the book will stimulate positive changes in us or our program.
Hallway discussions are continuing…