Hospice care seldom used by Mainers Study gives state failing grade

When it comes to use of hospice care among those older than 65, only Alaska has a lower participation rate than Maine, a national study has found.

The report gave both Maine and Alaska a failing grade of E, finding that just 9 percent of Mainers and 5 percent of Alaskans aged 65 and older who died in 2000 received hospice care.

The study, conducted by the Last Acts coalition with funding from the Robert Wood Johnson Foundation, found that the national mean was 21.5 percent – more than two times higher than Maine’s participation level.

Hospice was most popular in Arizona, where nearly half of patients over age 65 used it during their last year of life. In Massachusetts, 18.3 percent did. South Dakota was the next nearest state to Maine with 13 percent participation.

“We have to stop and remember that we have made some progress, but when you look at those numbers you say we’ve got a long way to go,” said Kandyce Powell, executive director of the Maine Hospice Council, a lobbying group.

Powell said Maine has long had low hospice use. She said she’s frustrated at the barriers that confront families in learning about and getting hospice care.

The only way that hospice use will rise is if everyone – doctors, advocates, insurers, regulators, state agencies, families and others – work together to build hospice referrals.

“It’s just going to take a concerted effort by everyone,” Powell said.

Officially, no one can definitively say why Maine’s use of hospice is so poor relative to other states, said Dr. Laurel Coleman, speaking for the Maine Medical Association. She said Maine, like Alaska, has a rural health care system that can make it hard for some to get the support and pain services related to hospice.

But she said Maine also suffers from chronically low Medicare reimbursements, which saps the financial ability of hospitals to offer comprehensive hospice services. And Maine, she noted, has no inpatient hospice treatment facility.

Medicare pays for hospice for patients considered to be likely to die within six months. It is often offered in their own homes.

The Last Acts coalition gave Maine an E for hospital-offered hospice and palliative care services. Just 18 percent of Maine’s hospitals offer these services.

Coleman said patients are more likely to pursue hospice if they learn about it in the hospital than if they have to search for the services themselves.

Other theories on low use have included that Maine’s doctors are older and less likely to suggest the service. And some suggest that Mainers venerate a Yankee tradition, which discourages requests for help, she said.

Whatever the reasons, some say that things are changing here.

Steven Michaud, president of the Maine Hospital Association, has been working with Powell, Coleman and a wide variety of others as part of a two-year effort to improve hospice use in Maine. He said the group’s work, which included educating health care professionals about hospice services for the dying and their families, is about to bear fruit.

“We expect to see growth over the next two years,” he said.

The study used the latest available data in looking at eight measures. In some, where the data were more recent, Maine fared well.

Maine got an A for having advance directive policies in place that support end-of-life planning in the form of living wills, medical powers of attorney and the designation of health care decision makers.

Data for 2002 showed the percentage of physicians certified in hospice and palliative care treatment was three-quarters of 1 percent of total physicians, compared to a national mean of one-third of 1 percent. That won Maine an A as well.

“This suggests that, compared to the other states, the [Maine] health care workforce is doing a good job in preparing for current and future needs of the frail elderly and dying,” the report states.

Coleman said that certified physicians such as she have been reaching out to educate those without training.

Maine got a B for state pain policies that allow physicians to treat pain at the end of life without undue scrutiny.

Last Acts said that nationally, the United States does a mediocre job in caring for its most seriously ill and dying patients. A poll of 1,002 adults in August and September found that 46 percent said the health care system does a fair or poor job in providing emotional support for the dying and their families.

Ninety-three percent of those polled said that improving end-of-life care is important.