For terminally ill cancer patients, where you live can shape end-of-life care

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If you are a terminally ill cancer patient, where you live can determine how much it will cost for you to die.

The last month of life for a Medicare patient diagnosed with advanced-stage lung or colorectal cancer cost an average of $13,663, according to a study published today in the journal Health Affairs. But that cost can also vary widely, the study suggested, from $10,131 per patient in the lowest 20 percent of hospital referral regions included in this study to $19,318 in the highest 20 percent.

What drives those price differences? A physician’s medical philosophy and practice styles propelled higher medical bills, and patients in geographic areas with fewer primary doctors and hospices per capita also tended to have higher end-of-life costs, the study said.

Researchers reached this conclusion after surveying physicians on what they believed, how those beliefs played out in practice and how skilled they were in delivering end-of-life care, along with patient and claims data.

These findings underscored how important end-of-life decisions are, even when a patient may be days away from death,said Nancy Keating, a health care policy professor at Harvard Medical School and physician who led a team of researchers for this study. For instance: Does it make sense to give a stage-IV lung cancer patient with virtually no prospects of recovery a fourth round of chemotherapy? Or would it be better to talk about entering hospice care?

“We need to do a better job of helping train physicians to feel more comfortable and be more comfortable talking about end-of-life care with patients,” Keating said.

Nearly 40 percent of the 3,139 doctors in the study said they strongly agreed that they were “well prepared” to offer end-of-life care. Roughly as many — 43 percent — said they would recommend chemotherapy to a patient with late-stage lung cancer, despite concerns about that patient’s ability to recover or the pain they might endure. Yet two-thirds of physicians said they would prefer hospice if they were terminally ill.

For patients, 12 percent of those surveyed said they believed “cancer can be cured” and as many patients said cancer treatment can result in “serious side effects,” according to Keating’s data analysis. More than a third of patients said they wanted treatment that could help them live longer “even if it causes more pain” and 43 percent of patients said they preferred such treatment even if it drained their finances.

This study joins a growing body of research on lowering health spending and the role of palliative and end-of-life care in improving the final days of a patient’s life, said Otis Brawley, who serves as chief medical officer for the American Cancer Society and did not contribute to this study.

“The growth of palliative and hospice care in the U.S. is really important for improving quality of care,” Brawley said.

For years, Keating has pored through Medicare and Medicaid oncology data to figure out how to better spend money. In this latest effort, she analyzed claims data for 1,132 Medicare patients age 65 or older who had been diagnosed with late-stage lung or colorectal cancer between 2003 and 2005. Her team then tracked those patients until 2012 using the Cancer Care Outcomes Research and Surveillance Consortium study that draws on registries of cancer patients.

She linked patient information from these two datasets to overcome what she sees as a weakness in many studies about health care costs — researchers often only see a snapshot of a living patient. This study tracked them throughout multiple points in time. That said, Keating concedes that a limitation of this study is that many patients died by the late 2000s , narrowing the pool of people who could be studied beyond that point. Most patients — 65 percent — died by 2005, within the first three years of the study period.

In this study, researchers scanned 26 hospital referral regions — from McAllen, Texas, to Manhattan, New York — of the 306 regions nationwide. Patients were assigned to these regions based on the ZIP code where they lived at the time they were diagnosed with cancer.

“In a perfect world, we would have gotten national data,” Keating said, but capturing responses from newly diagnosed cancer patients about their care preferences “would have been impossible.”

There are some “very human reasons” that may account for disparities in price and treatment preferences, Brawley said in an email to the PBS NewsHour. Sometimes, primary care physicians develop long-standing relationships with the families they serve, he said, and specialty physicians also forge bonds with families when a patient endures the trauma of receiving treatment for a life-threatening illness. This might make a physician more apt to suggestion additional interventions, despite negative side effects.

“Some would criticize them for believing too much in the medicine they practice,” Brawley said, “but my experience is it’s more complicated than that.”

The calculus of treating patients with advanced-stage cancer is difficult, said Laurence Heifetz, medical director at Gene Upshaw Memorial Tahoe Forest Cancer Center in Truckee, California, a rural cancer care practice he has built north of Lake Tahoe over the last 12 years.

A patient’s expectations don’t always align with what the best treatment might be or with what resources are currently available, said Heifetz, who also spent two decades treating cancer patients at 1,000-bed Cedars-Sinai Medical Center in Los Angeles.

When considering palliative care, it’s hard for doctors to know who has six months left to live — the threshold for offering end-of-life services, Heifetz said. And a treatment that works for one patient may not for the next, even if they have the same type of cancer, he said: “We don’t know who will respond, and then we’re blamed after the fact for giving an unnecessary drug to someone who dies.”

But Heifetz thinks he knows one way to bring down cost while delivering high-quality care: “An earlier, more honest conversation with patients will allow for more realistic acceptance of the sentence, ‘I guess it’s time to quit.’”

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