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The Boston Globe

Health & wellness

Study says many patients enter hospice care too late

Slightly more patients with terminal cancer are getting hospice care during the end of their lives, but they are still entering hospice care too late — within days of death — finds a new national analysis of Medicare patients conducted by Dartmouth researchers. And many are still dying in hospitals, often hooked to ventilators in an intensive care unit, despite studies showing that most cancer patients prefer to die at home.

The percentage of end-stage cancer patients who died in the hospital decreased from 29 percent on average to 25 percent from 2003 to 2010, but there are huge variations among hospitals: In Massachusetts in 2010, about 13 percent of terminally ill cancer patients treated at North Shore Medical Center in Salem died there compared with 41 percent of those treated at MetroWest Medical Center in Framingham, according to the analysis released Wednesday from the Dartmouth Atlas Project.

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The project researchers receive funding from nonprofit groups to determine how medical resources are distributed and used in the United States. In the analysis, they also found that the percentage of cancer patients receiving hospice care rose nationwide from an average of 55 percent to 61 percent.

“These trends can be called encouraging, but most of the hospice care received was within the last three days of life,” said Dr. David Goodman, lead author of the report. What’s more, the average number of days patients spent in the intensive care unit during the last month of life increased by 21 percent, which Goodman said could be driven by hospitals looking for more generous insurance payments for expensive services.

Massachusetts hospitals also had large differences in their utilization of ICU services during a patient’s last month of life: A patient treated at Cape Cod Hospital spent two to three hours on average in the ICU compared with two to three days for someone treated at Lahey Clinic.

“There is no evidence anywhere that these variations are due to patients at these different hospitals having different preferences for their end-of-life care,” said Dr. Lachlan Forrow, director of the ethics and palliative care programs at Beth Israel Deaconess Medical Center.

Even among teaching hospitals differences existed in the approach to caring for terminally ill patients, with fewer than 20 percent of patients dying in hospitals such as Maine Medical Center and Dartmouth-Hitchcock, while more than 30 percent died in Boston Medical Center and Beth Israel Deaconess.

“I’d like to think we do better than most places,” Forrow said of Beth Israel Deaconess, “but we don’t do remotely as well as we should.”

His institution is beginning a program to ask all patients about their end-of-life preferences and to insert that information into their electronic health record so it’s easily accessible to any physician treating them.

Dr. Susan Block, chairwoman of psychosocial oncology and palliative care at Dana-Farber Cancer Institute, said it’s vital for doctors to have such conversations with patients — preferably when initially diagnosed with a terminal illness.

“Patient goals should be the biggest determiner of care and these goals should be set early enough in the illness process that patients can have the kind of ending that they want,” she said.

Far too often, doctors do not bring up the delicate issue of dying until patients are entering their last week or two of life, Block added, sometimes after they’ve been hospitalized repeatedly or given aggressive chemotherapy for incurable cancers.

Dana-Farber had 29 percent of its terminal patients dying in the hospital in 2010, which was above the national average.

Nearly 60 percent of its patients were admitted to the hospital during the last month of life, and 24 percent wound up in the ICU.

About 56 percent of terminal patients at Dana-Farber were enrolled in hospice care, spending an average of nine days there.

To improve those statistics, the cancer center has been testing a “communication checklist” that oncologists can use to have end-of-life care conversations with patients.

“We’re trying to measure whether these checklists will have an impact on providing patients with the kind of care they want at the end of their lives,” Block said.

Much of the success will probably depend on doctors having more truthful conversations about just how effective — or ineffective — aggressive treatments are for metastatic cancer.

In a study published last year in the New England Journal of Medicine, Dana-Farber researchers found that 70 percent of patients with end-stage lung cancer in a national sample and 80 percent of those with terminal colorectal cancer did not report understanding that the chemotherapy they were receiving was unlikely to be curative.

“We’re not doing as good a job as we should be in helping patients make informed choices,” Forrow said.

Deborah Kotz can be reached at dkotz@globe.com. Follow her on Twitter @debkotz2.

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