When death approaches, most people would rather spend their days at home. But in Massachusetts, a remarkable number of dying patients often end up in hospital beds instead, and enter hospice for only a few days, a new analysis has found.
Massachusetts, especially the eastern part of the state, ranks among the lowest in the nation for the number of days residents spend at home during their final six months. Nearly one-fourth die in hospitals — a sign of the reluctance in the medical establishment to use hospice or palliative care.
Medicare spent more money on hospital care in Massachusetts than on any other health service in patients’ last six months of life, according to a study by the Health Policy Commission, a state agency that monitors medical costs.
Two-thirds of patients endured hospitalization during their final half-year, with an average stay of 12 days.
“Massachusetts is a leading place in the country for health care advances and new discoveries — and here we are pretty mediocre when we provide end-of-life care,” said Dr. Atul Gawande, a Harvard and Brigham and Women’s Hospital surgeon who wrote a book about such care.
Gawande noted that a survey of Massachusetts adults last spring found only 15 percent had discussed end-of-life wishes with their doctors. People, he said, need to specify what is the minimum quality of life they find acceptable, and what they are willing to endure to get more days of life.
“Those are the kind of questions that are not routinely asked,” he said. “But when they are asked, that makes a huge difference.”
Dr. Lachlan Forrow, director of ethics and palliative care programs at Beth Israel Deaconess Medical Center, identified three failings of the state’s health care system that underlie the data: inadequate home care services, a surplus of hospital beds to fill, and high-powered doctors trained to cure.
“We have a health care culture in Massachusetts . . . that makes it hard to accept mortality,” he said.
The commission examined payments by Medicare, the federal health care program for the elderly, during the final year of life of 27,100 Massachusetts residents who died in 2012, and culled data from two recent studies by other groups.
“This is ultimately an issue that will touch all of us,” said Sara Sadownik, the health commission’s deputy director, as she presented the data to the commission’s governing board Wednesday. “This is also an area of high spending.” She noted that nationwide, roughly one-quarter of all Medicare dollars are spent in the last year of life.
In Massachusetts, Medicare spent nearly $40,000 per patient in the last six months of life, for a total of more than $1 billion. But 42 percent went to inpatient hospital care, with 11 percent paying for hospice and only 4 percent for home health care. The study looked only at Medicare, which pays for most of the health care received by people 65 and older. It did not account for contributions by private insurance or the state Medicaid program, which covers nursing home care and some home health services.
The Health Policy Commission data also point to underuse of hospice: One-quarter of patients who enrolled in hospice care received the service for less than a week before death. This was true even for a subgroup of patients dying of cancer.
Sadownik said she didn’t know what the right number of hospice days is, but added, “When you see that a quarter of people in Massachusetts who are dying of cancer are using hospice for less than a week, I think it’s fair to conclude that something is really wrong with the system.”
The physician’s attitude is the best predictor of whether a patient is referred to hospice, she said.
Stuart Altman, the Brandeis University health care economist who chairs the commission, said he has witnessed “open hostility among a subset of the medical community” to palliative and hospice care. But Altman also said it’s unknown how much of the push to provide more care at the end of life comes from doctors and how much from patients and family members unwilling to let go.
Commission member Carole Allen, a retired pediatrician, called for better education of physicians, nurses, and others. “There’s a misperception that referring somebody to hospice is going to make them die,” she said. “Actually, people in hospice sometimes live longer and better.”
The study found the type of care a person received varied by income and geography. Costs were lower for higher-income people, because they spend fewer days in the hospital and more days in hospice care. Residents of Cape Cod and the North Shore are almost twice as likely to enter hospice as those in Southeastern Massachusetts.
Gawande, who cochairs the Massachusetts Coalition for Serious Illness Care, said he is starting to see a shift: More people are recognizing they have the right to expect care to conform to their wishes. And evidence is growing that “treating the quality of life is not in opposition to the quantity of life” — that focusing on a patient’s comfort does not hasten death.
The coalition, a group organized in May by Blue Cross Blue Shield of Massachusetts, aims to make sure that all adults get care that aligns with their values and goals. The coalition has grown to 67 organizations and will launch a website soon.
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