Living With Cancer
Susan Gubar writes about life with ovarian cancer.
Like many people with advanced-stage cancer, I wonder when I will decide about treatment, “Enough is enough.” In helping me formulate an answer to this question, Atul Gawande’s latest book, “ Being Mortal,” will now play an indispensable part.
A bestselling doctor-writer, Dr. Gawande has received praise from reviewers better able than I am to assess his judgments on the shortage of geriatric physicians; the damages done by nursing homes that don’t feel like homes; the benefits of experiments in assisted living to alleviate boredom, loneliness and helplessness; and the positive effects of palliative care with respect to the quality and also the quantity of life.
But too few cancer patients know how useful his book can be for those dealing with the difficult decisions presented by incurable disease. Dr. Gawande has faced this situation with patients and with someone he loved.
From the start of “Being Mortal” to its close, Dr. Gawande highlights the problem of terminal cancer care through poignant case studies that encourage people like me to formulate priorities. He is astute about the financial costs of that care: “25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care in their last couple of months that is of little apparent benefit.” And about how the cost pertains to individuals: metastatic breast cancer treatment amounts to “an average of $94,000 during the last year of life.”
With respect to the people whose stories he recounts, Dr. Gawande wants us to consider when it is best to stop treatment — not for the pocketbook, but for the patient’s well-being. His opening account about a man with widely metastatic prostate cancer serves as an admonition. The patient he calls Joseph Lazaroff opted for dangerous surgery, and he ended his life in intensive care.
Here, as throughout, Dr. Gawande emphasizes his own learning curve. Although at the time he believed that “Mr. Lazaroff had chosen badly,” now he feels that he and his fellow physicians failed to talk honestly about “the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life.”
Another case history, about a new mother with inoperable lung cancer, bears out the view that too many oncologists overestimate their patients’ survival time, remain reluctant to specify a prognosis, and offer treatments unlikely to work. Sara Thomas Monopoli underwent a series of protocols that failed to produce anything except debilitating side effects which, in turn, led to her death in the hospital.
The narrative about the decline of Dr. Gawande’s father, a physician, from a slow-growing spinal cancer proves that even doctors need guidance in making complicated decisions when the medical “pressure remains all in one direction, toward doing more.” After surgery, when an oncologist concluded a list of chemotherapy options by promising the senior Dr. Gawande that he could return to the tennis court, his son erupted in rage at such a “daffy” idea. With the help of hospice, the family eventually witnessed the benefits “of living for the best possible day today instead of sacrificing time now for time later.”
In “Being Mortal’s” final story about a woman with advanced ovarian cancer, Dr. Gawande dramatizes his own evolution from an informative to an interpretive physician. He expresses his worries, instead of listing the choices she could make, and asks about her fears, concerns and goals. Their collaborative decision to go ahead with surgery, but without taking risks, leads to the insertion of drainage tubes that relieve her nausea and pain when she returns home to die.
Dr. Gawande sets out to teach doctors not to try to fix what may be unfixable but to engage in helping patients conclude their life stories in a manner congruent with their values and with a full understanding of the risks and costs of the trade-offs they are willing to make.
He has taught me as a patient that even though I have expressed my desire to die at home with hospice, I really have no idea how I will die. I need to ask my oncologist what problems I may encounter when malignancies grow and which methods will be tried to alleviate discomfort. This will not be an easy conversation, but focusing on comfort when cure is impossible may make the rest of my life and my family’s existence less difficult.
Like Dr. Gawande senior, I doubt that a few added months of an incapacitated existence would constitute a sufficient trade-off for my going through the pain, debilitation and expense of aggressive end-of-life measures. I am grateful that his son is helping to usher in more humane registers of care that will enable patients to contemplate and decide what we want and don’t want while we are dying.
Though few of us can control our ultimate fate, one of the rare benefits bequeathed by cancer is the opportunity it gives us — albeit in grim circumstances — to author our sense of an appropriate ending, whether or not it occurs the way we imagine it.
Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer.
Related:
- “Living With Cancer: Becoming a Caregiver”
- “Living With Cancer: Patients on Our Own”
- “Living With Cancer: Keep On Cooking”