AN AIR OF bittersweet nobility envelops this collection of cancer essays. Seven prominent bioethicists collaborated to produce Malignant—five who battled the disease within their own bodies and two who witnessed and supported spouses with cancer. Despite its unfortunate title, the authors hope to inform and engage three very different audiences confronting cancer: “patients and their families, hoping to alert them to some of the problems they may face … doctors and nurses, hoping to show them what ethics looks like from the perspective of cancer patients and their caregivers … [and] our colleagues, because what we learned belongs in the ethics conversation.” I suspect it is the last group to whom the pages of Malignant will find the most appeal.
First, I need to make a personal disclosure of sorts. In 1987, I was a pediatrics resident in training at the Johns Hopkins Hospital. On August 19 of that year, my fiancée, a pharmacologist named Deborah Gordin, was diagnosed with cholangiocarcinoma, an exquisitely rare and uniformly fatal cancer of the liver’s bile ducts. In September, a month after receiving this ominous news, we married in Charleston, South Carolina, and honeymooned in Paris. We returned to Baltimore in early October, where she began a grueling round of chemotherapy and radiation while I continued with my pediatrics residency, a job that required me to be on call in the hospital every third night. Twelve months later, Debby was dead and I acquired the surreal status of a twenty-eight-year-old widower.
Debby’s terminal illness eventually taught me a great deal about the meanings and costs of love and commitment, the physical and psychological symptoms of grieving, and the failings, inequities, and inadequacies of modern medicine. But in the heat of the moment I was mostly overwhelmed by an intense loneliness and a profound despair. Still, I faithfully recount her story to my medical students and patients, not only as a teaching point but also as part of my endless struggle to make sense of her senseless demise.
Each year, more than 1.7 million Americans are diagnosed with cancer. As recently as the 1970s, however, cancer was still a word that many dared not say aloud. Consequently, most cancer patients and their loved ones suffered mainly in silence. But today, thanks to revolutionary changes in how we treat and respond to a cancer diagnosis, a veritable industry of memoirs, movies, plays, and other forms of reflection on this most crabby of maladies has erupted. Synthesizing and explicating all these individual accounts into universal experiences and ethical principles, however, is quite a different matter. Fortunately, Rebecca Dresser, who deftly edited this volume, and her contributors, Dan Brock, Norman Fost, Arthur Frank, Leon Kass, Patricia Marshall, and John Robertson, have developed the eloquent means to mine their malignant encounters for the greater good.
John Robertson employs the poignant story of his wife’s fatal diagnosis of ovarian cancer to illuminate the shock that comes from “learning the bad news.” He explains many of the miscues and miscommunications that emerge for those sitting on both sides of the stethoscope and how differently doctor, patient, and spouse process this information. Later in the volume, Robertson offers an equally cogent essay on the plight and role of the primary caregivers for those ill with cancer (typically the spouse or partner). This essay is especially important because it identifies the needs of a segment of the cancer community that is often ignored by the medical profession: friends and family of the ill person.
Rebecca Dresser presents the compelling quandary of the patient offered participation in an experimental clinical trial, a process that can be bent by coercion on the part of the medical investigators and the remorse or guilt some patients experience when they opt not to participate. Less well studied, however, are the tortured dynamics that may arise when the cancer patient enrolls in a rather high risk trial or when a family member pushes the patient to try everything under the sun out of some irrational faith in the value of participation. Such stories play out in every hospital in the nation many times a day. How they are addressed and resolved requires great clinical skill and wisdom that is not always applied.
Norman Fost, who is both an ethicist and a pediatrician, applies a contrarian spin when discussing his accidental diagnosis of kidney cancer. In May 2006, he began experiencing excruciating pain consistent with a kidney stone, which he had suffered from several times in the past. Reluctantly, he sought care at his university hospital’s emergency room. The physician who examined Patient Fost ordered an abdominal CT scan. Doctor Fost argued that this expensive procedure was not medically indicated for a bout with kidney stones. Fortunately for him, he lost the battle. To be sure, he was suffering from kidney stones but the CT scan also revealed an occult cancer of the kidney. He was subsequently treated for his renal malignancy and thrives to this day.
Yet Fost argues that his great physical fortune was unfair, and hence unethical, when considering the millions of uninsured Americans who might rarely or never have access to such care. This might be an interesting paradigm for the classroom, but it works less well when discussing the fear and reactions serious illness often engenders: if we took Fost’s argument further, we might ask why he went to the emergency room in the first place. He could have elected to stay home, relying upon a self-diagnosis of kidney stones followed by a supervised dosing of narcotic pain medications, watchful waiting, and planned phone calls to his physician. But in the real world, the overwhelming majority of Americans who are in excruciating pain will seek medical attention. Since many uninsured Americans use the emergency room as their medical entry point for all kinds of care, one wonders if the guy without insurance writhing in the bay next to Fost received an abdominal CT scan for his kidney stones. Given the strong possibility that the uninsured patient was scanned, we also need to ponder the ethics of who paid for that expensive radiological procedure.
We all pay, of course, in the form of rising insurance premiums, smaller employer contributions to insurance plans, charitable outlays, taxes supporting government-sponsored health care, and our own pocketbooks. Indeed, the overuse of expensive medical technology, for both the insured and the uninsured, has the potential to injure the nation’s long-term health as much as the shortsighted denial of universal access to health care. But the medical-industrial complex keeps getting bigger every year for a simple reason: it channels and collects vast rivers of revenue without a great deal of regulation or oversight. Too often, at least from the patient’s perspective, that torrent of money seems to run only in one direction, rather than irrigating the needs of the society underwriting it. What we really need to do is figure out more equitable, evidence-based, and economically sustainable ways of funding excellent health care for all Americans, one that puts people—not profits, health care corporations, or political ambitions—first and foremost.
Dan Brock, fortunately, tempers such ethical thought experiments in a superb essay discussing the allure of “questionable benefit treatments.” Like Fost, he considers how these costs affect insurance companies, Medicare, and the nation as a whole. But Brock also admits that “philosophical analysis doesn’t take into account the complexity of real-life medical decision-making.” Similarly, Leon Kass eloquently discusses the realities of cancer and mortality as well as the importance of making whatever time we have count. His elegy on the art of living and dying well ought to be required reading for every medical student.
Elsewhere Patricia Marshall explores the rocky and uncertain emotional terrain of remission. She adroitly describes the new frontier a cancer survivor claims as she prepares for a new reality of watchful waiting and hopeful avoidance of the cancer’s return. Arthur Frank discusses a more recent wrinkle in the fabric of malignancy, cancer support and cancer advocacy groups. Not only have these social networks helped others to live better lives with cancer, Frank observes, they have changed the landscape of how medical research is conducted, funded, and, not always for the better, politicized.
Dresser and her colleagues raise several challenging questions on the ethical and social dynamics of cancer care in the twenty-first century. In prose rich in scholarly contemplation, the book applies personal experiences to broaden the conversation of ethical health care for cancer patients. Most important, Malignant bears witness to a critical advance in oncology that may help both its practitioners and those stricken with the disease. Specifically, contemplating cancer in the open is far more beneficial to our collective health than the days when it was all too quietly hushed up as “the C word.”
Howard Markel, the George E. Wantz Distinguished Professor of the History of Medicine at the University of Michigan, is the author of An Anatomy of Addiction: Sigmund Freud, William Halsted and the Miracle Drug Cocaine.