[3 January 2013]
How We Do Harm’s opening paragraph grabs the reader by the throat. Edna Riggs has appeared at Atlanta’s Grady Memorial Hospital emergency room, carrying a bag. She is clean and well-groomed. Her vital signs are normal. She is not bleeding. She waits for several hours, bag in hand. Her complaint bears quoting:
“My breast has fallen off. Can you reattach it?”
Riggs has advanced breast cancer. She’s been ill for years, but was unable to seek treatment. If she left work to see a doctor, she got docked. Fearing losing her job, she carried the knowledge of cancer for nine years, until infection and eventual automastectomy—the medical term for a detached breast, now carefully wrapped in a damp towel, tucked inside a bag—drove her to seek care at Grady. By then it was too late. Edna Riggs was 56 when she died of a curable cancer.
Dr. Otis Webb Brawley practices oncology at Grady Memorial Hospital, the largest hospital in the United States. Because Grady treats uninsured patients, Brawley has a front row seat at the circus known as medical care in the United States. He brings a clinical interest in epidemiology and biostatistics to this circus, noting the United States is 50th in life expectancy rates. Canada is 12th. Monaco is number one, with a life expectancy rate of 89.73 years.
Using patient vignettes like Riggs’s, Brawley illustrates a broad spectrum of inadequate treatment, overtreament, and immoral financial practices. Cancer and its attending drugs, tests, and treatments are expensive, meaning doctors practicing cancer medicine stand to earn much money ordering unnecessary tests, radiology, and drug regimens. Even doctors wishing to practice ethically may be under tremendous pressure from their colleagues, corporate medical practices, or health maintenance organizations to reach specific financial targets: money first, patient second. Then there are plainly bad doctors, practicing with little oversight, continuing to make poor decisions or outright mistakes without suffering the repercussions. Their patients do.
The well-educated, employed, and insured are far from exempt. If anything, wealthier patients are at higher risk for poor care. Consider Helen Williams. Williams has a good job and excellent insurance. When she develops breast cancer, it’s caught early. Her doctor proposes surgery, then a blast of chemotherapy that will kill her bone marrow. No matter: her healthy marrow will be harvested prior to treatment and re-implanted after the chemotherapy.
The side effects of this slash-and-burn treatment are not explained. Helen expects to miss a few days of work. She misses a year. She also learns that high dose, marrow-killing chemotherapy has not been proven to help her kind of cancer. Nine years later, her cancer recurs, this time in her lungs. Her lifetime insurance costs are maxed out. Unfortunately, Helen and her husband are both earning salaries, so Helen doesn’t qualify for Medicaid. By the time she reaches Grady, her sole option is palliative care.
Brawley intersperses biography into this harrowing narrative, offering the reader a needed breather. Descending from a long line of black intellectuals, Otis Webb Brawley was born in Detroit to a lower-middle-class family. His parents had high expectations of their three children. Brawley was sent to Catholic school, where the faculty recognized his intelligence and encouraged him, even as Detroit grew more dangerous. Brawley remains a deeply religious man whose bullish attitude is tempered by humility. A man of his accomplishments—Brawley is chief medical officer of the American Cancer Society—need not work at a charity hospital. Brawley writes:
“Why work at Grady? To do some good, if I can… I go to Grady to understand where we are betraying our patients, where we are betraying ourselves, and how we can learn to do better. If you want to stay grounded, Grady is the place.”
In a field where compassion burnout is high, Brawley actively works to maintain patient relationships. After watching a patient endure unnecessary, invasively painful treatments at his children’s behest, he writes:
“I wonder whether this and similar experiences as a doc gave me post-traumatic stress disorder for which I have never been treated… We (doctors) cause pain to our patients , and often they die no matter what we do. One proven way to avoid feelings of loss is to dull all feelings, to detach… if you don’t become friendly with your patients, it’s a whole lot easier when they die. Many of my colleagues ward off PTSD by becoming assholes.”
Brawley isn’t an asshole, but he is a loudmouth, in the best possible sense. One of his favorite words is “shit”. He calls out colleagues cozying up to lobbyists and the pharmaceutical industry, naming cancer support groups whose funding comes from numerous drug companies and Kimberley Clark, manufacturer of Depends adult diapers. He spells out how for-profit medical centers drive up costs, then share the payout. That expense is not just dollars: it is pain, suffering, and untimely death.
As a black doctor practicing in Atlanta, Brawley brings a refreshingly honest, measured approach to racism in medicine. He offers reasoned analysis of racially-driven statistics and explains the why the black community has traditionally feared seeking medical care. Brawley does not take personal offense at racism’s impact on medical care. Instead, he works to get beneath surface answers, breaking down scientific data and offering neutral assessment.
In his own practice, he’s mindful of his interactions with both black and white patients, striving to engender trust and goodwill. If black patients carry a legacy of fearing doctors, whites often mistrust a black man in power. We can all benefit from reading Brawley’s wise words, which center on rising above differences to seek mutual understanding.
How We Do Harm’s patient vignettes drive home a singular point: almost all cancer patients die from poor care. Their experiences vary, but the message is unchanging. Patients in the United States are being over or undertreated by doctors driven by the bottom line. We are being given drugs we have no business taking, tests that do more harm than good, radiation we don’t need. Many people die from cancer treatments long before the disease can do its work.
Brawley suggests nothing short of revolt will change matters. He cites Project LEAD, a breast cancer advocacy group started by Dr. Susan Love, author of the seminal Dr. Susan Love’s Breast Book. Members of Project LEAD—laypeople and those in the medical community—are trained using a special curriculum involving science, epidemiology, and statistics. They are taught about breast cancer and the latest treatments. As advocates, members of Project LEAD participate in allotting grant monies and working with the government and the Federal Drug Administration. This, to Brawley, is the level of involvement necessary to bring substantive changes to American healthcare.
How We Do Harm should be mandatory reading for all in the health care industries, medical students and, perhaps, all cancer patients. I say “perhaps” because this fine and frightening expose has one flaw: it assumes people are capable of fighting for better medical treatment. Unfortunately, many Americans are incapable of advocating for themselves. This lack doesn’t necessarily indicate stupidity: even the most intelligent person is terrified by a cancer diagnosis or, for that matter, any kind of disease diagnosis. Many people are far too ill to do anything but accept whatever course of treatment is put before them. Assuming the existence of family and friends, these people are often too overwhelmed themselves to wonder why this drug and not that one.
Brawley is indeed right that we need to fight. But caregiving is another missing part of the medical infrastructure. And most caregivers are too busy caring for their sick loved ones to deal with anything more. I speak as a chronically ill person who is also a caregiver I am also highly educated, have a fine job and medical insurance I am damned grateful for. But keeping everything going—the millions of details that go into keeping another adult going, my day job, housekeeping, ensuring the car is running and dinner is on the table—is a monumental task. Time or energy for advocacy? Forget it.
Yet Brawley’s message is undeniably critical. The United States has just re-elected a president who is in favor of near-universal health insurance (and unlike advocates in power before him, such as the tireless late Senator, Ted Kennedy, and First Lady (at the time) Hillary Rodham Clinton, President Obama may actually achieve better health care for Americans under his administration). If you’re like me, and unable to do more than read, at least do that much. Then be grateful for men like Dr. Otis Brawley, President Obama, and for all who have fought and continue to fight the long, hard battle for universal health care in America.