Interview with Doron Weber, Author of Immortal Bird, About What He Learned From a Hospital Tragedy

Immortal Bird by Doron Weber, a program director at the Sloan Foundation, is about his son, Damon, who had a rare medical condition, and his son’s heart transplant operation (cost = $500,000) at New York Presbyterian/Columbia University Medical Center. Damon died after the operation. The post-operative care was so bad his father sued. “Three years into the lawsuit, the medical director [of the hospital] claimed Damon’s post-op records couldn’t be located,” said the New York Times.

How can such tragedies be prevented? To find out, I interviewed Doron Weber by email.

SETH Let’s say someone lives in a different part of the country — Los Angeles, for instance. What would you tell them about picking doctors to do a difficult expensive operation?

DORON I believe the key step before making any major medical decision is to gather as much information as possible. In my son’s case, we talked to everyone we knew at his regular New York hospital (New York Presbyterian) for their recommendation, and then we compared that information with experts at half a dozen other hospitals in New York and across the country who had a good reputation for his operation. I had established contacts at many of these hospitals, usually through physicians or scientists who I knew, either personally or professionally. But sometimes I would just get the name of a leading doctor and call him or her cold. They didn’t always respond but often they did, especially if you could make the case sound interesting. And I found that most doctors are very decent people who will try to share their knowledge, albeit succintly. I got the best results by being polite but determined and I didn’t require a long conversation–though some physicians were truly generous with their time–because in the end, you just want to know what they would do or who they would go see if it was their son or daughter.

I also traveled with my son to meet many of these experts at places like Children’s Hospital of Philadelphia, Boston Children’s, and the Mayo Clinic in Minnesota. During my son’s long illness, I found 3-4 key advisers–medical people who I respected and trusted, who would take my calls (one was my cousin, another the friend of a friend), and who were willing to work with me as my son’s case developed. These wonderful physicians would not just give intelligent medical advice seasoned by experience but they would send me the latest medical journals and articles for any possible leads. And they would direct me to other experts. Good people tend to know other good people.

If there was one mistake I made, it was to rely too much on data and statistics–they do matter, and they worked to extend and enhance my son’s life for several years–and not to listen to my own instincts. The physician whom I consider responsible for my son’s death–and against whom I have a still-pending lawsuit–was someone whom I had a bad feeling about from the start. (See Immortal Bird for examples.) But she had a great reputation, everyone kept extolling her and her hospital had the best outcome data for my son’s operation. Also my son wanted to stay at that hospital. So I suppressed my doubts and reservations and made the correct statistical calculation but a disastrous human one.

SETH What about screening doctors by asking about their legal record? For example, “Have you ever been sued for malpractice?” If so, going down the list of cases and learning about each one. And: “Have you ever been disciplined by a medical board?”

DORON Before my son’s wrongful death, despite all my information gathering, it never occurred to me to inquire about a physician’s legal record and whether he or she had ever been sued for malpractice. Now I know better. It would be very helpful to know if, and how many times, a physician has been sued before, even if it not definitive, because many doctors and hospital insurers settle out of court with strict confidentiality rules. But at least it gives you a preliminary context. And of course there are also frivolous lawsuits but if the same doctor was charged three times for the same alleged infraction, it is worth heeding. I have been most amazed at how many people, when I tell them about my medical lawsuit, describe how they or a loved one were horribly mistreated by a physician or hospital and came close to filing a lawsuit–but they didn’t go though with it because of the stress and the long, uphill battle and the years and expense involved. (Our own lawsuit has been active for six years but is on a contingency basis because we could not have afforded it otherwise.)  Almost everyone has a personal hospital horror story–if a conversation ever flags, just bring up this subject–but most people shy away from challenging the hospital and the doctors with their big reputations and deep pockets. I also found people who did not understand that they had been mistreated because it was too painful to confront and they preferred to accept the hospital’s misleading explanation. I think beyond a record of being sued, every physician should have to post a record of all patient histories, which minimally would include diagnosis, length and type of treatment, and outcome for each case. In no other field does the consumer have less information on which to base a decision, and yet in no other field are the stakes so high.

SETH Based on your experience with your son, what are the first things we should change about our health care system?

DORON For me the greatest problem with our health care system is that it is no longer about health care but about the health business. Many hospitals have been taken over by private equity firms while even the non-profits are under pressure to reduce costs at the expense of patient outcomes. So I think we have to find a way to return the patient to the center of the health care system and ensure that everything else revolves around his or her well-being. Efficiency and controlling costs matters but health care is not just another business and should not be run by business managers. I like the Mayo Clinic model where doctors are under salary so can take their time and not worry about insurance and where physicians at the same hospital consult with one another and take a more holistic, multidisciplinary approach. I also think continuity of care is absolutely critical and each patient needs one assigned physician who will take full responsibility and oversight for his/her care and be held accountable, regardless of how many specialists or other doctors the patient sees.