Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Archive for the month “January, 2013”

Immortal Bird Gets Writers Room Cake: One of 36 Works Published by Room Writers in 2012

IB cake close upLast night we held the annual Writers Room book party at McNally Jackson bookstore on Prince Street in New York City. In a time-honored tradition, every Room writer who had a book published in the past year is recognized and gets his/her book cover reproduced, with remarkable fidelity, onto the surface of a cake. We had 36 individual cakes decorated with different book covers at this year’s bash, an impressive number. I felt proud of this achievement both in my capacity as Writers Room Board President–though the person who deserves the credit is our amazing executive director, Donna Brodie–as well as being one of this year’s authors with a published book, Immortal Bird. I have been a member of the Writers Room for 25 years and it is my spiritual home. I first joined in 1988, in anticipation of Damon’s birth because I worried that having a newborn in the house would prevent me from concentrating on my work. I was a free-lance writer then, with my first book contract, and the Room provided a quiet refuge, a place to meet like-minded scribblers, and a kind of validation because it gave me an “office” to go to. After Damon’s congenital heart disease surfaced, I needed to get a regular job that would provide health insurance so I had to leave the Room but I continue to drop in and write there for brief intervals and to serve on the Board with many friends. The Writers Room is the oldest and largest urban writer’s colony in America and a place where writers can feel welcome 24/7. And as the 36 cakes can attest, it is a place where books get written and published on a regular basis.

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@Sundance: Memories and Degrees of Separation

I am at the Sundance Film Festival, celebrating the tenth anniversary of the Sloan Foundation’s science in film program with the Sundance Film Institute. I started the program, it’s exciting and successful, and all is thriving on the professional front.

Readers of Immmortal Bird will recall the scene where Damon flies in to Park City to join me and my best friend David Brumer for the last days of the festival. The year was 2004 and the Sloan winning film–also the Sundance Grand Jury Prize winner that year–was Shane Carruth’s Primer.

Shane has not made a film since but is back this year with another original and compelling work, Upstream Color.

Both Damon (March 30, 2005), my firstborn son, and David (July 8 2012), the dearest friend I have ever had who I knew for 40 years, are no longer here.

Damon only came once, but he left many memories. When John Cooper, now director of the festival but then the programmer, warmed up the Closing Night Awards audience by having them stand and do the “Sun Dance,” Damon leapt to his feet and shimmied like there was no tomorrow (he had a 14 months of tomorrows left). David, a film major and programmer for several Seattle film festivals, would often meet me at Sundance and he left his imprint everywhere. I cannot pass a theatre, a restaurant or a party rope line without thinking about him.

When I go to the Kill Your Darlings party in 2013– lead Daniel Radcliffe, aka Harry Potter, whose books Damon read aloud to his siblings, is there–I bump into Michael Almareyda, who is directing a Sloan-supported film about Stanely Milgram, best known for the Milgram obedience experiments but also the man who created the concept of Six Degrees of Separation through his “small world experiment.”

I first met Almareyda on the set of Deadood in 2004, where Damon made his national televsion debut. Almareyda knew Paula Malcomson, the actress who played Trixie and who took Damon under her wing and shared acting tips and much more with him.

Almaereyda’s Sloan-supported film Experimenter is being produced by Christine Vauchon, one of the producers of 2013’s Kill Your Darlings. The other producers of Kill Your Darlings, Michael Benaroya and Rose Ganguzza, first came to me at Sloan with a project about Hedy Lamarr in 2005. Rose Ganguzza, “the godmother,” also knows Nicole Kassells, director of The Woodsman, starring Kevin Bacon; Nicole, who I meet at this party for the first time, is the recipient of a new Sundance screenplay grant from Sloan that we will announce later this week. Nicole turns out to be close friends with Lisa Robinson, also at the party, who was the recipient of a 100k Sloan first feature prize for her film Synapse and also won the Sloan Feature Film Prize at the Hamptons International Film Festival for a film she co-directed, Small, Beautifully Moving Parts. And Lisa is married to a neurobiologist named Andre Fenton from NYU who is on our January 22 panel here at Sundance.

While mathematicians quibble whether it’s exactly six degrees of separation–the latest estimate is closer to four degrees of connectedness between any two people–the concept is alive and well.

But when you’re haunted by losses, six degrees of separation can be a constant reminder of what you no longer have.

At the AFI party, Nick Bruckman, producer of the beautiful Sloan-supported film Valley of Saints–winner of the Sundance audience award in 2012, a hit at international film festivals and just picked up for distribution by Marc Urman of Paladin Films–tells me he read Immortal Bird and it affectd him deeply. Nick is in his late 20s or early 30s and he says the book made him think differently about all his relationships. He has a new girlfriend. That is the best that Damon or I, or any father/writer, can ever hope for, and I am touched by his response.

Reader Letter from an ICU Nurse on the Importance, and Responsibility, of Nurses

I recently received this letter from an ICU nurse who had read Immortal Bird and has strong feelings about the critical role nurses played in Damon’s case and more generally about the role and responsibility of nurses at the bedside. Do you agree with her position?

“Dear Mr. Weber,

I have just finished your book. I am so sorry about what happened to your beautiful son.

As an ICU nurse, I was horrified by your account of the treatment Damon received (or didn’t receive). I wanted to share my perspective in hopes you may pass it along when people ask your advice about how to survive the ICU. I hope I am not overstepping, but I wish all my patients understood. It is the nurse who is the gatekeeper, coordinator, maker-of-things-to-happen. When a doctor is being an ass, or not responding to pages, I track them down or drag someone else to the bedside. I let my charge nurse, and then my nurse manager know when a doctor is not doing what they need to do. They follow up with force.

I was truly in disbelief reading the final pages of your book, wondering “where is the nurse??” the whole way through. Patients rarely grasp that it is the bedside nurse who is supposed to be their advocate and who, being there 12 hours at a stretch, is the only person who truly has the whole picture. More than the doctors, I blamed the nurses while reading. Patients can also ask how much ICU experience the nurse has. Less than two years and I would ask for a change in assignments. If the nurse is not fighting tooth and nail to get what the patient needs, ask for the charge nurse and demand a new nurse be assigned.

I love all of my patients, and I have two small children of my own. Your book touched me from both angles. It will change my practice for the better in many ways, and I am grateful for that.

I hope the lawsuit goes your way. My best to your brave wife and to Sam and Miranda.

With Thanks,

Preventing What Happened to Your Son: Seth Roberts Interview

A few weeks ago I received this email from an interesting profesor of psychology and blogger named Seth Roberts. The subject header read: “Preventing What Happened to Your Son.”
Dear Mr. Weber:
I read your book about your son with great interest and blogged about it:
http://blog.sethroberts.net/2012/02/17/father-versus-surgeons-and-new-york-presbyterian-hospital/

I wonder if you would be interested in discussing with me how these tragedies can be prevented, for publication on my blog if you want.

Seth Roberts

emeritus professor of psychology UC Berkeley

professor of psychology Tsinghua University

Seth and I communicated a few times and he posted this interview with me on Seth’s blog.
http://blog.sethroberts.net/2012/12/31/interview-with-doron-weber-author-of-immortal-bird-about-what-he-learned-from-a-healthcare-tragedy/

I cannot get the link to work so I am reproducing the interview here. I hope this does not violate some blog rule. If so I will immediately take it down.

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 scross 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.

  This entry was posted on Monday, December 31st, 2012 at 8:50 pm and is filed under books, health care, health care innovation. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

 

Helen Haskell, Mothers Against Medical Errors and Damon’s Story at Patient Safety Summit Keynoted by Bill Clinton

–Today, as former President Bill Clinton addressed the first Patient Safety Science and Technology  Summit in Laguna Nigeul, Califrnia, I thought of the amazing Helen Haskell, founder of Mothers Against Medical Errors and a moving force behind the summit.

–It was Helen who first got me involved with this issue when she wrote me a letter last summer:

Dear Mr. Weber:

 I have recently read your book, Immortal Bird, and was deeply moved. I, too, lost a son to medical error.  Lewis was also a shining light, also an actor.  His story is online at www.lewisblackman.net.
I have spent the 12 years since Lewis’s death working as a citizen advocate in patient safety, mainly because I did not have the courage to stare into the abyss of my loss the way you have done. I have worked with doctors, hospitals, and policymakers and like to think I have done some good. Next week I am giving a talk at the Quality Colloquium at Harvard and would love to include a picture of Damon in my presentation. I have the one of him standing beside the horse wearing a Brown tee shirt, if that is all right with you.
I appreciate your candor in telling Damon’s story.  His fate is very disturbing, not just because of the unspeakable loss, but because it is so utterly typical.  I have notes I took on that section of your book, thinking of other families I have known who have been treated in exactly the same way.  Most distressing is the account of the hospital staff calling security when you tried to get help for Damon.  I have known two other families to whom this happened. In both cases the patient died.”
–I was impressed by Helen’s personal story and her dedication to patient rights and I gave her permission to include Damon’s photo in her talk.

–Two weeks ago, Helen wrote again to tell me about another opportunity to improve patient safety.

“I am getting together a small group of stories of patient harm for the Patient Safety Science and Technology Summit that will take place in Laguna Niguel, California, in about two weeks.” Helen wrote.  “This is an important conference in which stakeholders from various areas of healthcare will be brought together to commit to collaboration on immediate solutions for pressing patient safety problems.  If you are interested, I would very much like to include your family’s story in this group. ”

 –Helen said that all she needed was a photo and summary of my story, which would be posted on the wall at the conference.
–I agreed and wrote Helen this summary, which I sent along with a photo.

Damon Weber

Damon Daniel Weber, born 8/8/88 with congenital heart disease, had two successful surgical repairs by the age of four, and thrived into his teen years. A top student at one of the nation’s leading magnet schools, he was a theater director and actor who made his national television debut on the HBO series, Deadwood. He also skied, sailed, and rode wild horses with a world-champion bull rider.

After developing complications related to his original repair, Damon underwent a heart transplant in January of 2005, at age sixteen-and-a-half. The transplant was successful, and worked even better than expected. Damon returned home after 30 days with an excellent prognosis.  There was jubilation in the family and among his friends.

But unbeknownst to Damon or his family—though his cardiologists knew—Damon’s heart donor had tested positive for Epstein-Barr virus (EBV), known as “the bugaboo of heart transplants.”  But no treatment was given to Damon, no preventive measures of any kind were taken, nor were any warnings provided to Damon or his family.  When Damon started reporting flu-like symptoms and other signs of EBV infection several weeks after returning home—cough, fatigue, fever, loss of weight, mental confusion—his cardiologists dismissed them, and said there was nothing to worry about. When the symptoms worsened and his family brought him in to the emergency room, the cardiologists still insisted on treating him for a full course of rejection, despite the fact that he tested negative for rejection and had every symptom of infection. 

It was like stepping on the accelerator instead of the brake.

The treatment for rejection—suppressing the immune system to stop the patient from rejecting the heart—is the opposite of the treatment for infection. With infection, the treatment is to reduce the immune suppression so the patient can fend off the infection with natural defenses. Damon’s head cardiologist, the unit’s medical director, knew what the right treatment was: a year earlier she had co-authored a book chapter which stated that reduction or temporary cessation of the immunosuppression is the proper standard of care for a patient in Damon’s condition.

So not only did his cardiologists fail to help Damon, they actually hindered him from fighting back with his own strength by not following their own protocol. By the time his cardiologists had correctly identified EBV as the cause of his illness, it was too late. Damon’s unchecked infection had turned into a full-blown case of post-transplant lympho-proliferative disease (PTLD), and he died a terrible death, his organs ravaged from within.

Following his death, Damon’s family brought a lawsuit against the hospital and the cardiologists. After failing to produce his relevant medical records for three years, Damon’s chief cardiologist testified at her deposition that his records had been shipped to an off-site storage and “could not be located despite all best efforts.“

In 2012, Damon’s father, Doron Weber, published a critically acclaimed memoir about his son’s life, Immortal Bird: A Family Memoir (Simon & Schuster) but to date the lawsuit remains unresolved and Damon remains gone.

 

 

Mothers Against Medical Errors Fight the Good Fight with Bill Clinton at Patient Safety Summit including Damon’s Case from Immortal Bird

Each year, more than 200,000 people die from preventable deaths in U.S. hospitals alone.

Tomorrow’s first Patient Safety Science and Technology Summit in Laguna Niguel, California, co-sponsored by Mothers Against Medical Errors and keynoted by former President Bill Clinton, speaks directly to this horrifying statistic and to Damon’s story. Indeed, thanks to MAME founder, Helen Haskell , Damon’s case—a preventable death in a US hospital–is one of several individual cases being highlighted at the conference.

The summit goal is “to help to create a world where patients can avoid preventable deaths and injuries.”

”Improving patient safety is one of the greatest challenges facing the healthcare industry,” says summit literature.… Clinicians, medical technology companies, payers, and regulators are too often pursuing their own initiatives. Cost-effectively solving patient safety challenges will require fundamental changes in the process of care and a collaborative effort from all stakeholders.”

Headlined “A Call to Action to Improve Patient Safety and Reduce Costs,” the summit will focus on three “addressable challenges” that can be solved now–one of which, the one that led to Damon’s death, is medical errors.

“Medical errors, defined as a preventable adverse event or effect of care, are a leading cause of death in the United States—exceeding deaths attributable to motor vehicle accidents, breast cancer, and heart failure, ” according to summit materials. “They include inaccurate or incomplete diagnosis or treatment, as well as when an appropriate method of care is executed incorrectly. Human error has been implicated in nearly 80 percent of adverse events that occur in complex healthcare systems.”

Immortal Bird is one story of human medical error that resulted in a tragic loss of life and so I was asked to write a summary of Damon’s story and send it, along with a photo, for posting on the summit wall and web site. Tomorrow I will talk more about Helen Haskell, the founder of Mothers Against Medical Error, who first contacted me during the summer after she read Immortal Bird.

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Doron Weber on Immortal Bird Aftermath

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