Black patients voluntarily seek substantially more intensive treatment in the last six months of life than white ones, who more often choose hospice services.
In a new medical records analysis of racial disparities in end-of-life care, researchers at Johns Hopkins Medicine and three collaborating institutions report that Black patients seek mechanical ventilation, gastronomy tube insertion, hemodialysis, CPR and multiple emergency room visits in the last six months of life.
This finding, researchers say, shows the extent of choices that are made in seeking end-of-life care despite an overall increase nationwide in the U.S. toward the use of hospice care.
“What’s unique about our study is that we show this disparity is persistent — not decreasing over time — and appears to be fairly general because it is not specific to a few diseases such as cancer,” David L. Roth, director of the Johns Hopkins Center on Aging and Health and a co-author of the study, said in a press release.
These persistent disparities might affect the quality of end-of-life experiences differently for Black and white Americans and underline the importance of advance care planning and advance directives — things that other studies have shown are less likely to be in place for Black Americans, Johns Hopkins wrote in the press release.
In a report on their study, published in the Journal of the American Medical Association Network Open, the investigators noted that “the increasing use of hospice services in the last six months of life is seen as a positive trend — reducing emergency department visits, repeated hospital stays, and intensive, invasive life-preserving procedures such as intubation/mechanical ventilation, tracheostomies and feeding tubes.”
The research team analyzed data from the ongoing, population-based REasons for Geographical and Racial Differences in Stroke study coordinated by the University of Alabama at Birmingham and funded by the National Institutes of Health.
Between 2003 and 2007, REGARDS enrolled more than 30,000 patients in the United States ages 45 or older to better understand why Southerners and Black Americans have higher rates of stroke — and related diseases that affect the brain — than other Americans. According to the press release, REGARDS has an oversampling of Black Americans and residents of the “stroke belt” in the Southeast — including Georgia — “to gain more information about the racial and geographical health disparities and mortality rate differences that exist.”
For the current study, Roth and his colleagues examined the records of patients who received hospice care for three or more days in the last six months of life, and if these people had multiple hospitalizations, went to any emergency rooms or were given intensive medical procedures during the same time period. Their study included 1,212 participants, 31.2% of whom were Black and 48% female, with a mean age of 81.
The researchers found that 34.9% of Black study participants who died used hospice services, compared with 46.2% of white participants. Black patients were significantly less likely than white ones to use three or more days of hospice. Also, Black Americans were more likely to have multiple emergency room visits and hospitalizations, or to undergo intensive treatments in the last six months of life — regardless of the cause of death. This was especially true for noncancer deaths.
“Despite tremendous growth in palliative care and hospice use in the United States, our work highlights a pressing need to address racial disparities in end-of-life care,” said the study’s lead author, Katherine Ornstein, director of research for the Institute of Care Innovations at Home at Mount Sinai and associate professor of geriatrics and palliative medicine at Mt. Sinai’s Icahn School of Medicine in New York.
The study team recommends more sustained efforts be made to reduce disparities in end-of-life-care through efforts to better educate and train health care providers and to promote the discussion of personal values and treatment preferences for the end of life in Black populations.
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