Hope can be a rare bird, hard to capture. Thirty years ago, when Dr. Jerome Groopman was in medical school, “the subjects of hope and despair were not part of our curriculum.” To recount his own education about what hope means to a patient and how a physician should properly create and foster “true” hope, Groopman starts with an arresting story.
As a senior medical student on surgery, he admits “Esther,” a young woman who, like him, is Jewish. She has far-advanced cancer of the breast. After undergoing radical mastectomy, Esther takes Groopman into her confidence. She believes that her cancer is a punishment from God. She tells of an arranged, loveless marriage and a shabby affair with her middle-aged, married boss. Her tears, though, are not tears of shame. Now that she has been disfigured, she says, her boss will choose “another girl. And the little that I had in life that was my own will be gone.”
Esther refuses chemotherapy. The frustrated student does not know how to get her to accept treatment that might save her life.
At the time of Esther's discharge from the hospital, her husband invites Groopman into their home, where he shares an uncomfortable Sabbath meal.
After canceling one follow-up appointment, Esther does visit her surgeon and consents to treatment – too late, as it turns out. Without suggesting any alternative explanations, Groopman states his belief that the surgeon persuaded her to accept treatment by using a skill that he, the student, did not then possess – one that the surgeon “never would have shared with a student.”
At first, Groopman saw Esther's behavior in “the narrow light [of] fundamentalist theology … Later, I began to see that this was too limited a view. Esther's religious background and beliefs were the particular language, the metaphors in which hopelessness was cast.”
The story, like those that follow, is essentially a skillful case report, focused on his topic. It reads a bit like Cliffs Notes for Madame Bovary. It is one that, he admits, “often I am tempted to refrain from telling … or from telling in full.” It could be told more fully in a novel or film. Probably, it could also become Groopman's version of “The Moment I Became a Doctor,” a story all physicians can tell.
LEARNING ABOUT HOPE
Groopman's learning curve about hope was not one that rose steadily. During his fellowship at the University of California-Los Angeles, he moonlighted for “Richard,” an oncologist who believed that when a patient had little chance for cure or long survival, “too much information is overwhelming [and] sustained ignorance is a form of bliss.”
One such patient is an African-American migrant worker who has metastatic colon cancer. She comes in with her daughter, a promising high school student hoping to attend an Ivy League college.
As in medical school, Groopman has a subsidiary relationship with the patient, whom he is covering for his employer. He has to conform to the oncologist's style. He emphasizes the positive, without telling an outright lie. It does, he admits, make their encounters easier.
As the patient's cancer advances, Groopman's mentor finds excuses not to be available for her appointments; when it comes time to arrange for hospice care, it is the apprentice who has to do it. When Groopman tells the daughter that the oncologist has “tried his best,” her retort shocks him: “I guess he didn't think people like us are smart enough, or strong enough, to handle the truth.”
That response caused the author's pendulum to swing too far. “For a while I held onto the ideology of the ‘right to know’ [the cold numbers.] Patients suffered from my ineptitude.”
When the tables turn on Richard and the cancer specialist becomes a cancer patient, Groopman encourages his mentor to undergo surgery despite the small chance of curing cholangiocarcinoma. “Jerry,” Richard replies, “I know the game you're playing. I've played it my entire professional life.” With difficulty, Groopman and the surgeon persuade Richard that there is indeed hope, “slim but true.”
Richard consented to surgery and radiation therapy – and survived. When they spoke by telephone, a year beyond Richard's “five-year cure,” Groopman “sensed that in his clinical practice, and in his own life, Richard had come closer to the middle ground where both truth and hope could reside. I had seen that it was possible.”
Stories of hope fill two-thirds of the book. A pathologist who is an authority on gastric carcinoma develops “his” disease. Despite his having, as his doctors believe, no chance, he insists on treatment. His colleagues are loath to see him suffer and actively oppose it. Like Richard, he beats the odds. It was “the meld of the puritan with the pioneer,” Groopman writes, that impelled him.
“Dan,” who had been a soldier in Vietnam, has non-Hodgkin's lymphoma. The mass is huge, life threatening, but curable. That news ought to reawaken Dan's fighting spirit, but he won't enter the battle. Groopman tells this tale as a detective story and, out of respect for the genre, I will not reveal the ending here.
Groopman's own horror story – of failed back surgery and 19 years of pain; of hope and function lost and restored – is also one you should let him tell you himself.
BIOLOGY AND EXPERIMENTAL PSYCHOLOGY
The book concludes with discourse on endorphins, cytokines, cholecystokinin, and other substances, including placebos, that modulate pain, influence mood, or putatively make some other contribution to the mind-body organization, Department of Hope. Groopman, determined to remain the skeptical scientist, interviewed other investigators and read the literature.
A chapter anatomizes hope. Misleadingly, Groopman calls the process “deconstructing.” He devotes most of the chapter to a decades-long study of “resilient” and “vulnerable” women. As they recall traumatic experiences, they generate different “cortisol profiles.” This part of the book, presumably the most germane to the work of neuroscientists and neurologists, was, for me, the least persuasive, although not for the author's lack of trying.
DEFINITIONS AND CONCLUSIONS
Groopman's experience with Esther taught him that only “genuine choices … some control over your circumstances” can allow hope to arrive. We feel hope when we can see “a path to a better future.”
“Even when there is no longer hope for the body,” Groopman believes, “there is always hope for the soul.” He closes by declaring that hope “may help some to live longer, and it will help all to live better.”
Neurologists know how hard it is to keep hope alive in people with degenerative disorders. I do not believe I could instill true hope in my hundreds of patients with amyotrophic lateral sclerosis by encouraging them to believe they could beat the odds. I tried, instead, to make them feel that they were living with a chronic disease, not dying from it.
It was not until my late wife and I went through her three years of living with hepatic failure, however, that I fully understood the indispensability of hope. That experience came at the end of my medical career. Groopman's book, like all forms of instruction, is no substitute for personal experience; but, had I read it in time, I think it would have helped me to do better by my patients.
Groopman has published more than two dozen articles in The New Yorker and he has written three books. This one, in hardcover, is a pleasure to hold and to read. The paper is substantial; the pages vary a little in width, and have a “torn” free edge; the layout and typeface are elegant.
There is a detailed index. The Notes, a mixture of comments and references to the literature, are, unfortunately, not flagged in the text. Only a more compulsive reader than I am would pick them all up as he went along.
The book is a quick read, but its message will linger. You'll read it, I hope.