In the last two days before dying, many hospice patients cared for at home or in a nursing home were not seen by a doctor, nurse or social worker, a new study finds.
The researchers found that one in eight Medicare patients didn’t get such visits, especially if they were black, dying on a Sunday or were in a nursing home.
The study, funded by the U.S. Centers for Medicare and Medicaid Services, led the agency to change its hospice care payment policy for 2016, according to study lead author Dr. Joan Teno. She is a professor of medicine at the University of Washington in Seattle.
The agency, as of Jan. 1, now has a new payment structure for hospice patients, adding a “service intensity add-on payment” in the last seven days of life for up to four hours a day for visits by a registered nurse or medical social worker.
Teno said her study only looked at the last two days of life “because symptoms escalate and pain worsens for patients who are cared for by families, and families need to be educated about how to care for the patient. Also families need support not only in the task of being the hands-on primary caregiver, but also bearing witness to the death of a loved one.”
Teno said that Medicare had previously paid a single rate per patient regardless of the number of visits by professional staff, mainly a registered nurse or social worker, on any day.
The researchers looked at doctor visits, too. But most visits are from registered nurses and medical social workers, Teno said. These two members of the hospice team are the ones who have control over the care plan, she explained.
“They can make changes to ensure that the dying patient is comfortable and to provide education to the family on how to care for the patient in the last days of life,” she said.
Teno added that she hopes these policy changes will “improve end-of-life care for many hospice patients who are dying across this country.”
The report was published online Feb. 8 in JAMA Internal Medicine.
Dr. Alexi Wright, an associate professor of medicine at Harvard Medical School in Boston, said that hospices are underfunded.
It’s the one area in medicine that is a per-diem service paid for by a fixed daily rate that must cover medications, equipment and clinical caregivers’ salaries at a cost that’s less than a single dose of chemotherapy, she said.
“Families are often overwhelmed when losing a loved one and haunted by their final moments,” Wright said. “This is too important a time to shortchange patients and their families. As this study shows, hospice payment reform is long overdue.”
For the study, the researchers used information from Medicare to collect data on more than 660,000 patients receiving basic hospice care. Teno’s team found that during the last two days of life, just over 12 percent of the patients were not seen by professional staff.
Visits varied by state, the researchers found. In Alaska and Washington, for example, nearly 20 percent of dying patients were not seen by professional staff, whereas in Wisconsin only about 4 percent of patients had no visits during the last two days of life.
When Teno and colleagues looked at more than 3,400 hospices, they found that 8 percent provided no visits during the last two days of life and less than 1 percent provided visits to all patients during the last two days of life.
In addition, black patients were less likely to have visits from professional staff in the last two days of life, compared with white patients, the findings showed. And hospice patients in nursing homes were almost two times less likely to be visited by professional staff than those dying at home.
Also, about one in five patients who died on a Sunday did not have a visit from professional staff in the last two days of life, Teno said.
Smaller hospice programs (those with 90 deaths or less during the one-year study period) and programs in nursing homes were less likely to provide visits in the last two days of life, Teno said. These findings did not differ whether the hospice was a nonprofit or for-profit program, she said.
Dr. Eric Widera, an associate professor of medicine at the University of California, San Francisco, and coauthor of an accompanying journal editorial, said that when choosing a hospice, people should be sure the program will meet their needs.
“It’s important to look at the services they can actually deliver and how long the program has been in existence,” he said. Widera also advises asking people who have used the hospice about their experience.
“Hospice has been shown to improve the way people die,” Widera said. “It improves symptoms, pain, the quality of care, satisfaction for patients and families, but not all hospices are built the same, so before you sign up for a hospice, it’s wise to ask these questions.”
For more on end-of-life care, visit the National Hospice and Palliative Care Organization.