Pittsburgh Hospice Study Raises Questions on Race, Income and Stress

Pittsburgh Hospice Study Raises Questions on Race, Income and Stress

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Photo: Family Hospice and Palliative Care, Pittsburgh, Pa.

PITTSBURGH--More than 13,000 people a year die in Allegheny County, and data suggest that a higher percentage are getting more intensive, personal end-of-life care than is the norm across America.

More than half of the county's residents who die receive hospice care before doing so, according to University of Pittsburgh (Pitt) researchers who say America as a whole has yet to reach that threshold. Also, a surprise finding in the study also raised important questions about the roles of race and income level.

Hospice care is designed to provide nurses, aides, volunteers, clergy and other staff who have specialized end-of-life training for dying people and their families at home or in institutions.

Better Near-Death Experience

Studies have generally shown a better perception of the experience near death for those receiving hospice services than for those who don't, a finding the Pitt survey echoed through interviews with relatives and friends who had assisted those who died. About half of the caregivers for those using hospice services rated treatment at end of life as excellent, compared with about one-fourth of those who did not access hospice.

"People felt they were more in control, happier with the outcomes, more satisfied with the whole process" if they were part of a hospice program, said Steven Albert, a professor who chairs Pitt's Department of Behavioral and Community Health Sciences.

He headed a broad health survey of more than 5,000 county residents in 2009-10. One section of it was devoted to hospice care, and those responses were analyzed by Jennifer Seaman, a registered nurse and Pitt doctoral student. She focused on the 8 percent of county residents who said they had assisted someone close to them who had died in the prior 12 months.

The study showed that of those dying in Allegheny County, 53 percent received hospice care. At that time, the rate of hospice utilization in America was around 42 percent. It has since climbed above 44 percent as part of a long, gradual trend toward more hospice use, according to national statistics.

The Pitt research has not yet been prepared as a paper or shared with local hospice providers, but they welcomed the findings.

At the region's largest provider, Family Hospice & Palliative Care, based in Mt. Lebanon, Penn., director of access Eric Horwith said measurements taken regularly of Medicare beneficiaries have shown more of them making use of hospice services locally than elsewhere.

For that 65-and-older population, who make up the bulk of people dying, 75 percent were enrolled in a hospice program in Allegheny County compared with 67 percent nationally in the most recent data covering 2012, Horwith said.

"We're happy about that," he said, noting not every death is going to be one that is anticipated and appropriate for hospice, so there's not going to be a lot of room for growth above 75 percent among Medicare patients. The federal government allows Medicare payment for hospice services when physicians have certified it would not be surprising for the patient to die within six months.

Horwith and Maryanne Fello, director of Forbes Hospice, which is part of the Allegheny Health Network, both suggested that the large percentage of older adults in the region has something to do with the heavy hospice use here.

In addition, they said many new for-profit hospice providers have entered the local market in recent years and promoted their services widely.

Fello said a major concern for hospice providers locally remains the length of time patients receive hospice services, as many people wait too long and don't gain the full advantage of the help that could be provided.

Surprising Finding on Racial Differences

The Pitt research did not ask about length of hospice stays, but it contained a surprising finding that the difference in hospice use between racial groups was not deemed statistically significant locally.

National studies have commonly suggested African-Americans utilize hospice services less frequently, partly because they fear their lives are less valued by the medical community.

Seaman said that income differences proved more statistically significant than race in determining whether someone accessed hospice help.

When she presented the local findings in November at the Gerontological Society of America conference in New Orleans, audience members expressed surprise that caregivers of those in hospice programs reported just as many "poor mental health days" as those who had no hospice benefit.

The Pitt researchers said in an interview that a spouse or adult child of someone in hospice may experience more stress than non-hospice participants from being a close observer at home as their loved one declines. Families that don't use hospice are more likely to have the patient cared for by others in a hospital or long-term care setting in final days and weeks.

"Think about it, these guys are witnessing death very closely, yet their mental health is still as good as people who are more likely to be shielded from death," Mr. Albert said. "And despite it all, these people are still happier with the way it went."

Veteran age-beat journalist Gary Rotstein wrote this story for the Pittsburgh Post Gazette assisted by a MetLife Journalists in Aging Fellowship, a program of New America Media and the Gerontological Society of America.