Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Archive for the month “November, 2013”

Immortal Bird Speaks for Patient Voice at Federal “Partnership for Patients” Meeting

Yesterday, I was the featured guest speaker, via webinar link, at a Washington DC meeting of the federal partners in the Partnership for Patients (PfP) initiative. My task was to tell representatives of about a dozen federal agencies–from the CDC, FDA, NIH and CMS to the DoD and VA–about my experience as related in Immortal Bird and to discuss my advocacy work since then on behalf of patients. I was also there to remind them why their work is so important and to bring a personal story into the bureaucratic mix.

The PfP is a public-private partnership dedicated to improving the quality, safety and affordability of health care for all Americans. It includes physicians, nurses, hospitals, employers, patients and their advocates, and the federal and State governments. The Partnership’s measureable objectives include reducing hospital acquired conditions by 40% and hospital readmissions by 20% (40/20).

Begun in 2010 and slated to end in 2013, this ambitious, 3-year program aims to:
• Make Care Safer so that there are 1.8 million fewer injuries and 60,000 lives saved
• Improve Care Transitions so that preventable complications during a transition from one care setting to another are decreased resulting in 20% fewer hospital readmissions and 1.6 million patients who recover without readmission

The three key components of the PfP are
a) 26 hospital engagement networks across the country which include 3700 participating hospitals
b) 82 sites in the Community-Based Care Transitions Program that include community-based organizations such as social service providers or Area Agencies on Aging, multiple hospital partners, nursing homes, home health agencies, pharmacies, primary care practices, and other types of health and social service providers serving patients in that community
c)The Patient and Family Engagement Network to share information and catalyze action among existing patient and family engagement leaders, especially at the community level.

Patient and Family Engagement is where I and my experience as the author of Immortal Bird comes in.
The PfP people heard my talk at Chautauqua this summer about the importance of “the patient voice” in the health care debate and invited me to join their efforts, which appear closely aligned with my own. The PfP mission statement reads:

“Patients, families and caregivers are essential partners in efforts to improve the quality and safety of the care they receive, including being active members of their own health care team; advocating for improved safety where they receive care; and helping to set the health care priorities in their communities. Patients and families have an important role to play in ensuring the patient perspective is part of every Partnership for Patients activity and must be supported in taking action with patient and family engagement best practices and tools.”

The meeting yesterday was intended to give the federal partners an open and collaborative forum for discussing and reporting their activities, especially how they are progressing towards the 40/20 targets and how PFP team can support them related to the PFP aims. The federal agencies represented at this meeting included

a)Center for Medicaid and Medicare Services (CMS), which has the operational lead
b)Agency for Healthcare and Research Quality (AHRQ)
c)Administration for Community Living (ACL)
d)Centers for Disease Control and Prevention (CDC)
e)Health Resources and Services Administration (HRSA)
f)Office of the National Coordinator for Health IT (ONC)
g)Indian Health Service (IHS)
h)Food and Drug Administration (FDA)
I)National Institutes of Health (NIH)
j)Occupational Safety and Health Administration (OSHA)
k)Substance Abuse and Mental Health Administration (SAMHA)
l)US Office of Personnel Management (OPM)
m)US Department of Defense (DOD)
n)US Department of Veterans Affairs (VA)

My role was to tell them about Damon’s story and how the health care system failed him, as a reminder of how urgent their work is. It easy to lose sight of the critical nature of such efforts–to save human lives that are lost due to preventable errors and remediable practices–just as it is easy to lose sight of the patient voice, and the centrality of the patient, in the health care debate. I discussed the diagnostic error–treating infection as rejection despite all signs and symptoms to the contrary–that led to my son’s death. And I listed some of problems our family encountered including lack of continuity of care, too little direct observation of the patient and the difficulty of getting good information, especially comparative outcome data. I also talked about my lobbying on behalf of the Adult Congenital Heart Association and Mended Little Hearts for more federal funding for research and data collection for Congenital Heart Disease and about the continuing impact of Immortal Bird on the medical profession, from its endorsement in Congenital Cardiology Today as must-reading for all pediatric cardiologists and cardiac surgeons to its adoption and use by universities and university medical centers.

It was a productive session and a positive experience and it also gave some of the federal partners a chance to speak in their own personal voice and to share similar family experiences. Our current error-riddled medical system is an equal opportunity destroyer and does not discriminate based on one’s place in the hierarchy or on one’s race, ethnicity or gender or whether one favors red or blue or works at the city, state or federal level.
A shout-out from me to these dedicated federal workers and this worthy nationwide undertaking to improve care and save lives.

The Biggest Mistake Doctors Make

Laura Landro has an excellent article in today’s Wall Street Journal about diagnostic medical errors and some innovative methods to address them: The Biggest Mistake Doctors Make . Landro, who described her own battles with the medical system in Survivor: Taking Control of Your Fight Against Cancer shares many of my concerns with our health care system and recently retweeted my column about my Immortal Bird talk at NYU, A Tale of Two Hospitals. Her article gives a very useful overview of diagnostic medical errors, both the dimensions of the problem in terms of lives lost and financial cost, and in terms of some creative efforts now underway to try and stem this epidemic. My own view is that automation, computer algorithms and new diagnostic devices and tests are all good and should be applauded but it’s changing the culture of medicine–and specifically the kinds of people who go into medicine and their motives for doing so–which holds the key to improving care and reducing errors.

Immortal Bird at NYU Medical Center or/ A Tale of Two Hospitals

–I have not posted for over a month but I continue to give talks about Immortal Bird and the issues it raises, particularly regarding medical errors and ways to improve medical care. And the medical establishment, to my surprise, continues to discuss Immortal Bird and the lessons it holds for patient care and communication. But this week, for the first time since Damon died in 2005, I felt our story was being heard by the medical profession in a new way, and I even received an apology for all the things that went wrong with Damon’s care.
–The apology, albeit eight years late, was sincere and heart felt. The hospital, its head and its leading physicians said they were deeply sorry for all the mistakes and mistreatment recounted in Immortal Bird and no one should have to go through what Damon and our family went through. It was a deeply moving experience, balm for a still-festering wound.
–Alas, the apology did not come from New York Presbyterian/Columbia University Medical Center–the hospital where Damon died!
Columbia University Hospital, charged by our family in a still-pending lawsuit with carelessness, negligence and malpractice in Damon’s death, persists in claiming to have “lost” all Damon’s relevant medical records and to deny accountability for his death. Instead, the apology about how the health care system failed Damon came from New York University Langone Medical Center, a facility not involved with his care, and therein lies a tale of two hospitals and two different philosophies of care and how to confront, and learn, from one’s mistakes.
NYU Langone has a dynamic Dean and CEO, Robert Grossman, a neuroradiologist by training, who has made quality care his number one priority. Grossman has instituted many innovative, data-driven methods for monitoring performance and outcomes by individual physicians in every department and he also holds weekly lectures and discussion series for his top medical faculty and staff to share what is right, and what is wrong, with current practice. Grossman believes in relentless self-assessment and self-improvement, and his aggressive efforts were recently rewarded when NYU Langone was ranked number one for overall patient safety and quality among leading academic medical centers across the nation.
–Grossman received a copy of Immortal Bird from a colleague and became so enmeshed in the story, he read it in two days. He then purchased 40 copies and made it assigned reading for the Wednesday lunchtime discussion series. He invited me to address his team and asked the bioethicist Arthur Caplan to moderate the discussion. The talk was not open to the public or the press.
–This Wednesday November 7, I was the guest speaker at a private luncheon of about 50-60 department chairs, head physicians and medical administrators at NYU Langone Medical Center. I spoke about Damon and about our experience in negotiating the health care system as we tried to save his life, and I included both the highs and the lows of our encounters with the medical system. I pinpointed continuity of care, direct observation of the patient and the difficulty of getting good comparative outcome data. The goal of this meeting was to learn from the mistakes made in our case in order to prevent them from recurring and to discuss ways of improving patient care in light of our experience.
–While I expected a certain defensiveness and professional “guild” solidarity as I faced 50 top doctors and told them what had gone wrong with my son’s care, I was surprised by how emotionally open and available this group appeared to be to Damon’s story. They had read Immortal Bird and listened to me as parents and family members first, physicians second. One senior doctor quoted passages I’d written back to me as only a fellow father could. Most of the people in the room seemed to understand and identify with my frustrations, pain, anger, and tragic sense of loss.
–I was equally impressed by the assembled medical professionals’ desire to learn from our tragedy and use it as a guidepost to institute a better and more responsive system of care. One physician asked me whether, given all my experience with such a wide range of doctors–from very good to very bad–I could suggest the best criteria for selecting medical students. What qualities should the admissions office be looking for in the doctors of tomorrow? It was an excellent question and cut to the heart of the issue, and it was asked in a spirit of genuine inquiry and desire for the right answer. I am not a medical expert and I had never thought about the question in this way, but my instinctive reply was that assuming a baseline of academic competence–courses, grades, MCATs etc.–the human element was paramount. They should be looking for top human beings, young men and women who were going into medicine because they cared about others and wanted to help them get the best treatment possible and who scored highest on the capacity for empathy, compassion and selflessness.
–We discussed other important issues such as who else in the treatment team beyond the physician could improve the patient experience and how to deal with the long-term fall-out, including grief and mental health challenges. There were experts in the room in each of these areas, and it was clear everyone understood there were deficiencies that needed to be addressed and improvements that needed to be made.
–“Quality defines individuals, and institutions,” Dr. Grossman wrote me after, “and without it there is no trust, no relationship and no responsibility–the core of medical CARING.” Let us hope that the NYU Langone Dean and CEO wins the day and that his humane, rigorous, patient-centered approach to running a hospital and ensuring the highest quality of care and safety for all becomes the standard of care in every medical center in America so that tragedies like Damon’s can be prevented in the future.

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Doron Weber on Immortal Bird Aftermath

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