Americans routinely tell researchers they don’t want to spend their final days tethered to machines in a hospital, preferring to die at home with less invasive treatments. But that rarely happens.
Now, a study from Brigham and Women’s Hospital suggests the biggest reason for that disconnect appears to be the doctors who treat those patients. The physicians, the study suggests, have outsized influence in shaping how patients spend their final days.
That has profound implications not just for patients but for medical care more broadly, with end-of-life care accounting for a staggering share of all medical spending.
“For so many patients, no one has ever sat down with them and talked with them about hospice care, instead of being on a ventilator or in a nursing home,” said the study’s lead researcher, Dr. Ziad Obermeyer, an assistant professor of emergency medicine and health care policy at Harvard Medical School. “As physicians, we need to have these conversations earlier.”
To reach their conclusion, Brigham researchers scoured the medical records of thousands of terminally ill cancer patients nationwide. Those whose physicians frequently refer patients to hospice are 27 percent more likely to spend their final days in that type of end-of-life care. Hospice focuses on comfort and quality of life, treating pain and other symptoms, rather than a cure.
The researchers found that no other factor — not age, race, gender, or where patients lived — played nearly as significant a role as doctors when it came to who enrolled in hospice care, according to the study published Monday in the journal Health Affairs.
The findings — which were based on an analysis of nearly 200,000 patient records, and which build on other reports documenting doctors’ hesitancy to talk about hospice care — emerge as regulators search for ways to control soaring health care costs.
The nation’s Medicare bill in 2011 for patients’ last six months of life accounted for more than a quarter of the spending that year in the federal health insurance program for older Americans, according to the Medicare NewsGroup, a news organization that focuses on Medicare.
The Boston researchers did not interview patients or physicians about why so many failed to choose hospice. But the study’s lead researcher said he believes a key factor is the mentality of many physicians that “death is failure.”
“And doctors, from the time we take organic chemistry forward, we don’t like to fail,” Obermeyer said. “But in a lot of ways, death is not the greatest failure. In a lot of ways, not giving patients the care they want is failure.”
The study, underwritten by the National Institutes of Health, focused on records from 2006 through 2011 of patients with brain, lung, and pancreatic cancers, and those whose cancers had aggressively spread. Nearly half of the patients were cared for by only about 10 percent of all the physicians studied, suggesting that targeting even a small group of doctors with education about the benefits of hospice might substantially boost patient enrollment, Obermeyer said.
The researchers also found that physicians linked to for-profit hospitals were less likely to enroll patients in hospice. Patients not in hospice receive more end-of-life care, expensive tests, and treatments, which generate more money for the hospitals.
Dr. Lachlan Forrow, director of ethics and palliative care programs at Beth Israel Deaconess Medical Center, said most hospital systems are designed to keep pumping out treatments, often making it easier for physicians to offer another test or medicine, than to have a series of long and often difficult conversations about death with patients.
Insurers, Forrow noted, are more likely to pay for the treatments than the conversations.
“In the future, any medical care for a patient with a serious advancing illness should only be paid for if it is based on the patient’s preferences, and there is documentation that [the patient] knew about hospice options,” said Forrow, an associate professor at Harvard Medical School.
In December, the Massachusetts Health Department issued rules implementing a 2012 law that requires doctors, hospitals, and other health care providers to offer end-of-life counseling to terminally ill patients.
The law followed recommendations made in 2011 by a state-convened expert panel charged with suggesting improvements to Massachusetts’ lagging system for end-of-life care. Forrow chaired that panel.
Since 2012, the state has required physicians to take a course in end-of-life care as a condition for renewing their license.
Leaders of the National Hospice and Palliative Care Organization, a trade association, said they have long believed physicians play a vital role in helping patients understand hospice, but have been frustrated in finding ways to encourage more doctors to use hospice services.
“We hear often from families, especially after patients have died, ‘We wish we had known about this sooner,’ ” said John Mastrojohn, the organization’s executive vice president. “It’s not just a matter of access, but timely access for patients and families.”
Another study released Monday found that the timing of palliative care for patients with advanced cancer can be critical in reducing costs. Palliative care also focuses on reducing pain and other symptoms, and improving the quality of life for patients and their families. But unlike hospice, it can be provided along with traditional medical treatments.
Researchers at the Icahn School of Medicine at Mount Sinai in New York studied nearly 1,000 patients at five US hospitals and found that a palliative care consultation within two days of hospitalization reduced hospital costs by 24 percent, compared to patients receiving traditional care.
A palliative consultation within six days of hospitalization reduced costs by 14 percent, according to the study in the Journal of Clinical Oncology.
An earlier version of this story wrongly identified Dr. Lachlan Forrow as the cochair on an expert panel. He was the chair.