"I've been on a journey with this disease," says Gayle Plumb of Portland, Ore. "I've had plenty of time to live my life; but also plenty of time to think about things. I'm 61 years old and I've had a great life. It might be shorter than I hope."
Plumb has chronic lymphocytic leukemia, or CLL, a slow-growing cancer of the blood and bone marrow. She was diagnosed with the disease 10 years ago and learned that some patients live with it, often untreated, for more than 20 years. But at year four, she began to need treatment, which put her in remission for periods of time. In January, the disease grew more aggressive, and recently she began consulting with a palliative care team to help her think through long-term decisions. "Right now I'm on a chemotherapy regimen that everyone knows isn't going to last," she says.
In the United States, about 14 million people are living with, or have survived, cancer. Another 1.6 million are diagnosed each year. The cost of cancer care is rising even faster than the cost of medical care in general; costs went from $72 billion in 2004 to $125 billion in 2010, and are projected to hit $173 billion by 2020 if nothing changes.
Half a million Americans die of cancer each year, and far too many of them die in ways they do not want: hospitalized, in an ICU, unaware of loved ones and suffering through painful treatments that turn out to be futile.
The Institute of Medicine, in a report released September 10, called America's cancer care a "system in crisis." The Dartmouth Atlas Project, which tracks variations in medical care and practice across the country, also released a report last month that found late stage cancer care literally all over the map. For example, a cancer patient in New York City has a 43 percent likelihood of dying in the hospital, while a similar patient in Mason City, Iowa has only a 10 percent chance of dying in a hospital.
Why the numbers are so varied isn't easy to sort out says Dr. David Goodman, director of the Center for Health Policy Research at Dartmouth and lead author of the recent Dartmouth Atlas report. "One assumption is that academic medical centers and cancer centers deliver aggressive treatment near the end of life and that patients are going to those hospitals looking for curative or life-prolonging treatment," he says.
Dr. Neil Wenger, director of the Healthcare Ethics Center at UCLA's David Geffen School of Medicine, sees some truth in that assumption. He knows that some patients come to UCLA precisely because they want to try anything, no matter how remote the chance of success. "It's very common for us to receive consults with clinicians who are being pushed to provide treatment that won't do any good," says Wenger.
But there's more to the variation than the type of hospital. UCLA and Johns Hopkins Medical Center are among the country's leading academic cancer centers. Yet, Goodman points out, there are stark differences in how late-stage cancer patients are treated at those two institutions. For example, 58 percent of cancer patients at UCLA spend time in the ICU during their last month of life; only 18 percent of cancer patients at Johns Hopkins are in the ICU during their final month.
In large part, treatment reflects the prevailing medical culture in the regions or hospitals where people get their care.
But patients and their family members also can join in the push for more treatment, no doubt hoping for a cure or a longer life. In reality, the opposite is more likely, according to Dr. Ira Byock, He is the director of palliative medicine at Dartmouth-Hitchcock Medical Center and author of "The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life." In late-stage cancer, higher levels of medical treatment usually mean more suffering, with little or no extension of life. So why push for more? "The bottom line is people don't want to be dead. We doctors don't want them to die," says Byock. "The problem is, we have yet to make one person immortal."