Read Rage

The American Association of Retired Persons (AARP) has begun an advertising campaign to bring the imperiled American Social Security System’s routinely forgotten wasting disease to the public’s attention. In the ad, children of various ages and backgrounds stand gazing at the camera with mildly inquisitive expressions. They utter a battery of unheated recriminations about promises made to fix, among other issues, the US healthcare system. The subtext, of course, is that whatever we adults are able to accomplish (or fail to achieve) now directly impacts their future. It is up to us to heal an ailing system, and we have yet to lift a finger to unfasten the lid on the vitamin supplements.

Certainly, ‘healthcare’ is spoken about often enough in the abstract. It has become a broad, psychologically-freighted term that is most often used with intent to strike close to the human heart (and frequently just south of the gastrointestinal tract). Politicians aim the term at audiences and fire into the crowd for effect. Yet, it is a gun they never clean. It’s simply a weapon in their electoral arsenal, and it has long since begun to rust.

With the exception of Donald Bartlett and James Steele’s Critical Condition: How Healthcare in America Became Big Business –and Bad Medicine (Doubleday, 2004), very rarely does one see revelatory books on the state of the healthcare system that are not issued by governmental think-tanks, or spiral bound and overflowing with pie charts and unvarnished statistical analyses. Rarer still is literature about specific healthcare experiences, medical error, or insurance-related tragedies. Despite healthcare’s inherently personal consequences and its reputedly frequent imposition of horror on the individual, politicians, insurance companies, and even some clinicians treat it as a highly impersonal subject. Contemporary healthcare has become a vastly subjective triage system driven forward not by a genuine desire to heal or assuage, but by a preoccupation with profit.

While many volumes have been devoted to psychological memoir, no one has yet published (without benefit of counsel) essays on the subject of medical error or the injustices wrought by indifferent doctors and managed care organizations. However, for issue number 21 of the journal Creative Nonfiction, Lee Gutkind, the journal editor as well as professor at the University of Pittsburgh, brought together a collection of 10 such essays, told from multiple vantage points. The issue was later expanded by five essays and published as a book by Southern Methodist University (SMU) Press in late 2005. Its title? Rage and Reconciliation: Inspiring a Healthcare Revolution. An interesting note is that the SMU series editor, Thomas Mayo, is a professor of law, whose specialty is health law and medical ethics.

The book’s preface, written by Karen Wolk Feinstein, President of the Jewish Healthcare Foundation and Chair of the Pittsburgh Regional Healthcare Initiative, sets the collection’s tone. Her essay deals with the nature and cost of medical error, and she argues for a redesign of the medical process in the face of the continuing litigation crisis. Following Feinstein’s words are essays told by patients, healthcare providers, and legal figures. They speak of despair, embarrassment, injustice, but also sometimes triumph. Although the stories are individual and each one bears a distinct voice, they are all deeply emotive and allow for a direct sympathetic connection with the narrating patient, lawyer, or clinician. And while there is tragedy and crisis in each of the 15 stories, it is never for sensational effect, but to serve as an authentic record of passing events. We as readers are made to understand the narrators’ sleepless distress, their general sense of helplessness, and their ultimate motivations that are based on narrow alternatives.

Gutkind was accused, less than a decade before the publication of Rage & Reconciliation, of fostering a league of ‘navel-gazers’ by Vanity Fair’s James Wolcott in an article titled “Me, Myself, and I”. Wolcott derided excessively (or perhaps obsessively) introspective writers, who gratuitously purge their internal concerns for others to read. He also disparaged the contemporary preoccupation with memoir. However, with Rage & Reconciliation, Gutkind puts the genre of memoir to work for positive ends. If personal stories have both factual reportage and universal value, if they allow others to connect either on a visceral or emotional level for cathartic ends, and if they have the power to change the course of human affairs, do they not have some greater value? Moving others to constructive action, whether by persuasive or expository means, is the hallmark of socially-engaged literature.

Rage & Reconciliation allows readers to separate the complex and hauntingly individual from the massive collective abstraction that has informed our understanding of the US healthcare system. While one might argue that the analyses may appear subjective, there is thought-provoking reflection that can be used to stimulate productive discussion. And opening dialogue often inspires positive transformations.

Shortly after the publication of Rage and Reconciliation, the Jewish Healthcare Foundation offered to subsidize another Creative Nonfiction issue on the subject of hidden malpractice. The foundation’s intent was not to rabble-rouse, but to reveal neglect and mishandling so that it might be rectified. Under the issue title Silence Kills, the journal put out a new call for essays and personal memoirs, which related knowledge of or experience with medical misconduct that has been covered up. Silence Kills is slated for release later this year and, along with Rage & Reconciliation, marks the beginning of a literary sub-genre that skates on the thin edge dividing constructive disclosure from defamatory exposure. This new body of work throws the current healthcare system’s under-recognized problems into high relief and adds a compelling, personal dimension to a formerly rhetoric-heavy subject.