From the CLSC vault: Humanist perspectives on health care reform

Week Nine’s theme, “Health Care: Reform and Innovation,” will undoubtedly feature talk about health care policies, models, policies for models and models for policies. And appropriately so — Chautauquans can’t sustain a real discussion on health care if they don’t explore the nitty-gritty of how it is being implemented.

This week’s Chautauqua Literary and Scientific Circle selection, Immortal Bird: A Family Memoir by Doron Weber, is contributing to the conversation in its own way. Immortal Bird is the story of Weber’s son Damon’s untimely death and the flawed medical care that surrounded his final days.

Intentionally or not, the book provides a humanist perspective on health care reform, which can sometimes be bogged down with politics and finance. Weber wrote the book out of a personal desire to share his son’s spirited and unfairly short life. But Immortal Bird has become more than a memoir to inspire sympathy and devoted readership; it has also become an innovative tool in reform.

An article by Dr. John W. Moore in the February 2013 issue of Congenital Cardiology Today praised Immortal Bird as a piece of writing, but it also focused on its potential as an instructive text for doctors-in-training. Moore said the book raised significant questions about responsibility, communication and programmatic issues: How are records tracked? Where should patients be kept? Are there even enough beds?

Immortal Bird is a powerful personal tale of the loss of a child, and it also provides important lessons for the congenital cardiology community,” Moore wrote in the article. “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.”

This intersection between the literary world and the medical world is also seen in a CLSC book from the 2004 Season, My Own Medicine: A Doctor’s Life as a Patient by Dr. Geoffrey Kurland.

The premise of My Own Medicine is implicit in its title. Kurland, a pediatric pulmonologist, experiences a role reversal when an X-ray reveals a white mass in his lung — what is eventually diagnosed as hairy cell leukemia. The book chronicles Kurland’s struggle with this rare and statistically fatal form of cancer, the invaluable lessons he learns about himself and what it is like to be on the other side of the operating table.

Although it is told by a doctor, Kurland’s story shares many qualities with Weber’s Immortal Bird. Just as Weber’s memoir finds fault in doctor-patient communication, Kurland’s also runs up against this issue.

After the initial X-ray that revealed the white mass in his lung, Kurland’s doctor asks for a CT scan of his chest. This is earlier in the novel, before his condition has been diagnosed.

“Even though I am a physician, my illness, if that is what it is, is very much a mystery to me,” Kurland wrote. “Then it strikes me, as I lie there in the scanner, that perhaps ‘they’ are lying to me to be kind, to hide from me a truth I shouldn’t know. I now know what patients have been talking about when they would refer to me and my colleagues at the hospital as ‘you doctors.’ For all these years, many of my patients had felt it was ‘them’ against ‘us,’ the physicians. For the first time, I can understand where that had come from, what it meant, and, most importantly, what it feels like to feel that way.”

This revelation is unique, as it comes from a doctor-turned-patient, but it’s also fascinating metaphorically because it takes place during a CT scan. The scan, as Kurland describes earlier in the chapter, is like multiple X-rays happening simultaneously, creating multiple scans in seconds that build within 10 to 15 minutes to create a reproduced slice of the body.

In some ways, this scan, as it compiles incomplete images of the body to create some imitation of a whole, is operating in the same way that Kurland’s memoir is. But instead of scans, the materials used are memories.

As Moore wrote in his article, first-person accounts like Weber’s are essential to improving care; they open lines of communication. The two memoirs quietly assert that behind talks of insurance cost, delivery and accessibility, there are human stories that give these issues their power and urgency.

Policymakers, insurance providers, doctors, writers — everyone has been or will be a patient at some point in his or her life. This idea, as well as the fear of monetary and personal cost, is common ground for the discussion of health care reform.

Kurland spikes a fever in the opening passage of his book. He writes: “I hope that I will be allowed to stay with the rest of humanity at 98.6; but, as I’d learned on many other nights, uncertainty is my constant companion.”

Uncertainty is the companion of doctors and patients alike. To navigate it, the kind of dialogue taking place on the Amphitheater stage this week is essential, but so is the willingness to communicate and share the stories that demonstrate the importance of health care.