Issue #21, 2003

What's the Story #21

Rage and Reconciliation: Inspiring a Health Care Revolution

Lee Gutkind

What's the Story #21

While immersing myself at the University of Pittsburgh Medical Center for research on a book about the world of organ transplantation, the transplant surgical team would round in a pack—sometimes as many as 40 at a time in white coats, marching marionettes into the transplant wards. The patients and families waiting to see their doctors in the late afternoon—some of whom had been waiting all day—referred to this group as the “Thundering Horde.”

This was in the early stages of transplantation, when the survival rate for liver, heart and heart-lung transplantation was low. Many patients not only died after transplantation, but also suffered for long periods, as did their families, who were trapped in a painful and destructive deathwatch. In addition to the doctors of the transplant team, there were surgeons who had come to Pittsburgh, then the largest and most active transplant center, from all over the world to see if and how organ transplantation worked. Many didn’t speak English, so they could not communicate well. But those on the regular staff, who could have and should have dialogued with patients and families, didn’t.

When the Thundering Horde went into a transplant recipient’s room, they invariably turned their backs on the patient and clustered around a complicated wall-chart, studying numbers gathered by nurses and residents showing the way the body was responding to the immunosuppressive medications all transplant patients were bound to take—forever. Conversations about “the numbers” and whether the doses of medication should be adjusted might go on for 10 minutes or more. From time to time, the transplant team answered questions from the visitors. Decisions were made about adjusting medications noted on the chart. Then the Thundering Horde would turn abruptly and march down the hall to the next room, often without a word to the patient. Once I overheard an attending surgeon reprimanding a resident for talking too long with a patient when there more important things to do: “Save lives first; answer questions later,” he said.

To be fair, the patients and families acknowledged and appreciated the truth in that statement. The surgeons were so busy jetting through the night to harvest organs, then standing on their feet in the operating room—sometimes for eight hours on end—to implant them, then rounding to make certain their patients’ immunosuppressive medications were effective, that they couldn’t afford to waste time or energy, even if it made the patients feel better and their loved ones more secure. But understanding why the transplant team was being so rude and insensitive didn’t eradicate the hurt and resentment they felt. I remember one patient commenting with great bitterness: “My doctor knows what my liver looks like, but not my face.”

Many of the surgeons were aware of the animosity they were enflaming, but felt helpless to do much about it. For one thing, they were exhausted. They didn’t see their families for days on end. Some doctors admitted that they were purposely keeping themselves at a distance from patients, half of whom, they realized, would be dead in three years or less. Losing patients was part of the game. Bonding was foolish. How much loss could any human being—even a surgeon—take?

I devoted four years to researching and writing my book, “Many Sleepless Nights: The World of Organ Transplantation,” spending an equal amount of time with families, patients and medical staff until I thought I understood all of the active participants in the transplant experience. And I remember thinking at the time how much I wished I would write something that would help these disparate groups accept one another’s fears and desires. I honestly think that my book helped bridge the communication gap; it has remained in print for more than a decade and been translated and republished in five languages.

The medical world has changed since “Many Sleepless Nights” was published. But the animosity and misunderstanding between doctors, nurses, patients and families, continues to simmer—for the same reasons as before and, unfortunately, for new and not totally unexpected ones. Over the past decade, patients have lost even more of their individuality and personality, while physicians’ stars have been tarnished, and their egos and dominance eroded. Now, insurance companies have the power and are the collective enemy. “Managed care” sometimes means, “nobody cares.” Everyone feels angry and wounded.

This issue of Creative Nonfiction attempts to begin to heal the wounds by bringing some of the hurt and resentful people together to tell their stories, to vent their rage, to explain their frustrations and hopefully, to begin to understand each other so that a reconciliation might someday occur.

Obviously, I am not contending that this issue will reverse a process and a nightmare that has been a century in the making in this country. But these 12 essays can serve as a foundation and anchor for future dialogue leading to a more unified emotional and professional connection.

It is significant and crucial to point out that “Rage and Reconciliation” is a product of a literary magazine supplemented by a large, wealthy, health care organization. The Jewish Healthcare Foundation was devoted to overhauling the system and protecting the rights of patients long before most political leaders and professional organizations began promoting the concept.

Literary magazines usually don’t initiate and publish theme issues devoted to such seemingly non-literary subjects as health care. But as a genre and a journal, Creative Nonfiction is devoted to encouraging, capturing and publishing reality—the literature of reality—from those who have lived it. This is our mission.

Writers, scholars and academics can no longer hide behind the walls of ivy. Symbolically and literally, we—all of us—must immediately acknowledge the commonality of the threats against our bodies, our brains and our psyches and work together to understand and defeat them. Pain and cancer, death and depression are our collective adversaries. We are all being helped, and unfortunately, hurt by the health care system.

Four of the essays have been written by people who regularly write for law reviews and medical journals—not literary journals. These new voices cement the bonds of our resolve to collectively express the rage and frustration we share—and reconcile the need to understand each other in order to force change and create a new, more realistic and humanistic system that will benefit us all. 

Author Bio

Lee Gutkind

Lee Gutkind, recognized by Vanity Fair as “the Godfather behind creative nonfiction,” is the founder and editor of Creative... read more

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