More than a third of Americans now die under the care of a hospice service, a huge increase from just a decade ago and a major advance in end-of-life care.
But a new University of Michigan study reveals major gaps in the availability of hospice care across the country gaps that the researchers attribute directly to the way hospice care is currently funded in America.
Most strikingly, the study finds that communities with lower average incomes and education levels, and areas with large concentrations of elderly people, are far less likely to be served by a hospice than communities with wealthier, more educated and younger populations.
In an oral presentation Friday at the Society for General Internal Medicine meeting, U-M Medical School and VA researcher Maria Silveira, M.D., M.P.H., shared findings from an analysis that combined national Medicare data on hospices and federal county-level 2000 Census data in a sophisticated computer model.
The resulting map of the United States looks like a blotchy patchwork, with very high hospice availability in the Northeast, upper Midwest and much of California, lesser availability in states along the Mississippi and in the Rocky Mountain states and desert Southwest, and much lower-than-average availability across much of the South, Texas, Florida and the Plains states. There was wide variation within regions.
On average, the study found, counties have 2.1 hospices located within their borders, but the number ranges from none to 125. When the researchers looked at 60-mile-radius service areas the range recommended by the National Hospice and Palliative Care Organization the average number of hospices serving a county was just over 52. But it ranged widely from none to 280.
When the researchers analyzed factors that associated with the availability of hospice, they found that the county's average income, education level and percentage of residents over age 65 were the factors that most strongly determined how much hospice would be available to residents.
For example, the more households with incomes over $100,000, or residents who held at least a high school diploma, the better the access to hospice. But surprisingly, the higher the percentage of older residents, the lower the availability of hospice.
Although the dramatic differences revealed by the analysis surprised Silveira and her colleagues, they strongly suspect they know why hospice availability varies so much.
Relying on the ability of patients or their families to pay for care and services that aren't covered by Medicare or other insurance -- and counting on charity and volunteers to make ends meet means that hospices are most likely to flourish in areas where incomes are highest, she explains.
"Since 1982, Medicare has paid for hospice, and now pays for the vast majority of such care provided in the U.S. But it only reimburses 70 percent of hospice stays, and hospices must make up the difference in out-of-pocket charges, charity donations and volunteerism," she says. "Also, nursing homes, which care for many elderly people, currently have little incentive to offer hospice services."
The disparities seen in the new analysis will only fade if there are changes in the way hospices are built and reimbursed for their care, says Silveira, an assistant professor of internal medicine at U-M and a member of the Health Service Research & Development Center of Excellence at the VA Ann Arbor Healthcare System.
And that, in turn, could erase the differences in hospice use that have been reported nationwide by other researchers.
To make hospice more available to more people, Medicare would have to subsidize the building of new hospices in under-served areas, and reimburse hospices for more of the actual costs of the care they provide, Silveira explains. Private donors to hospices could also be encouraged to give to support the extension of hospice services to under-served areas.
At the same time, the survival of a hospice also depends on referrals from physicians who are familiar with hospice and what services are available in the area, as well as willingness on the part of patients or families who know what hospice is and how it differs from traditional end-of-life care. Both of these factors are related to education level and people's experience with hospice.
Even though hospice has been around for decades, the concept is still unfamiliar or vaguely understood by many people, Silveira notes.
In general, hospices strive to offer high-quality and compassionate care for patients who have an illness or injury that is limiting their life expectancy, no matter what their age. They provide medical care, pain management and emotional and spiritual support during the end-of-life period, aiming for a pain-free, dignified death. Hospices may offer services within a freestanding facility of their own, in a patient's own home or within a hospital, nursing home or long-term-care facility.
"The boom in the hospice field in the last two decades has brought increased quality of life and less suffering and grief to the final days of millions of people, and may actually help terminally ill people live slightly longer than they would have in hospitals," Silveira says.
Analyses Analyses to date have shown that hospice saves money overall, while also resulting in lower hospitalization, resuscitation and treatment costs.
Despite hospice's benefits, previous research has shown that elderly people, members of minority groups and people in rural areas are far less likely to use hospice. The new analysis probes the reasons why, by looking at hospice availability using mapping technology.
Dr Silveira says these findings should be taken with a grain of salt. They are based on hospice office billing addresses and may not always accurately represent actual service area or amount of hospice. "Also, it is very important to remember that we cannot glean anything about the actual behavior and intentions of hospice providers from studies such as this that take such a 'low power' view of the world," she says. Further studies will illuminate the issue even more.
The study was funded by the VA HSR&D Center of Excellence and the University of Michigan.
Written by: Kara Gavin