One Courageous Woman

April 16, 2012

Everyone should read this article in Health Affairs. It is the moving story of a woman diagnosed with terminal breast cancer who chose palliative treatment over interventionist strategies.

Amy Berman is one knowledgeable and connected patient. She is a nurse, works for a health foundation in New York, and is a long time policy leader in health care. She received a terrible diagnosis: stage IV inflammatory breast cancer that had already spread—incurable, even with aggressive treatment. And though she was only 51 years old when she received this diagnosis, she chose a path of palliative rather than aggressive care.

The April issue of Health Affairs is all about cancer: research on cancer; quality improvement in cancer, and the cost of cancer care. It is a rich issue and includes great examples of new and improving strategies for dealing with cancer, including an article about the Cancer Care Continuous Quality Improvement Initiative led by the University of Michigan and Blue Cross Blue Shield of Michigan.

But Amy’s story is the most powerful. It is powerful because it is personal and beautifully told. It is also powerful because in it, Amy reflects on what is important in life and counters the pressures so pervasive in medical care today—pressures that often cause patients to seek more care even when it seriously interferes with quality of life.

When she was diagnosed with inflammatory breast cancer, she went to see a specialist who told her what kind of treatment she should get without ever asking about her wishes. The specialist made it clear that he expected she would do everything possible—at whatever personal cost—to prolong her life, even if it meant just a few more months for her.

Those of us who have had friends who have died of cancer even after trying aggressive treatment approaches know what a cost those treatments exact on quality of life: nausea, pain, fatigue, disfigurement, and a pervasive feeling of always, always being sick. Amy chose another path: one of symptom management, to feel as good as possible for as long as possible, even if that might mean less time than possible with aggressive treatment.

In medical care today, we are bombarded with constant messages that more is better—more tests, more surgery, more visits to the doctor. But that isn’t really true. Indeed, nine leading physician groups have now come out with a list of procedures that should not be done on a routine basis—saving dollars, yes, but more importantly, saving people from diagnostic and other interventions they may not need. Physicians in this Choosing Wisely effort were goaded into action by Howard Brody, a physician and medical ethicist. Dr. Brody challenged the profession to lead an effort to recommend a more sensible use of medical resources. It is refreshing to see physician organizations begin to educate the public that more might not be better.

Similarly, the use of palliative care needs a different framework in our thinking about health care. Choosing palliative care is not “giving up,” as too many think it is. It is choosing to live life—and handle death—with dignity and quality.

Amy Berman, a knowledgeable and strong woman, chose her own path. Wouldn’t it be wonderful if millions more had the information and support to make a choice that reflected their personal values, as Amy did?