Study documents racial differences in hospice use and end-of-life care

About Liz Seegert

Liz Seegert (@lseegert), is AHCJ’s topic editor on aging. Her work has appeared in NextAvenue.com, Journal of Active Aging, Cancer Today, Kaiser Health News, the Connecticut Health I-Team and other outlets. She is a senior fellow at the Center for Health Policy and Media Engagement at George Washington University and co-produces the HealthCetera podcast.

Image by Steve Harwood via flickr.

A new analysis of racial disparities in end-of-life care finds that Black patients voluntarily seek substantially more intensive treatment, such as mechanical ventilation, feeding tube insertion, kidney dialysis, CPR and multiple emergency room visits in the last six months of life, while white patients more often choose hospice services.

The study’s researchers say the findings demonstrate the disparities seen in seeking end-of-life care in the U.S., despite an overall increase nationwide toward the use of hospice care regardless of diagnosis, but especially for non-cancer deaths.

The report, published in the Aug. 24 online issue of JAMA Network Open, includes researchers from Mt. Sinai Hospital in New York City, Johns Hopkins University, the University of Alabama at Birmingham and Weill Cornell Medicine in New York City.

“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,” study co-author David L. Roth, Ph.D., director of the Johns Hopkins Center on Aging and Health (COAH), said in a statement.

These persistent disparities may result in a different quality of end-of-life experience for Black and white Americans. It also underlines the importance of advance care planning and advance directives, which other studies have shown are less likely to be in place for Black Americans.

The researchers noted that the increasing use of hospice services in the last six months of life is seen as a positive trend, as it can reduce emergency department visits, repeated hospital stays, and intensive, invasive life-preserving procedures such as intubation/mechanical ventilation, tracheostomies and feeding tubes.

Researchers analyzed data from the ongoing, population-based Reasons for Geographical and Racial Differences in Stroke (REGARDS) 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 participants in the United States, ages 45 or older, to better understand why Southerners and Black Americans have higher rates of stroke and related diseases, which affect brain health, than other Americans. By design, REGARDS has an oversampling of Black Americans and residents of the so-called “stroke belt” in the southeastern U.S. ―  including Alabama, Arkansas, Georgia, Kentucky, Louisiana, Mississippi, North Carolina, South Carolina and Tennessee ― to gain more information about racial and geographical health disparities and mortality rate differences.

For the current study, researchers identified REGARDS participants who defined themselves as either Black or white Americans, died between 2013 and 2015 due to natural causes (excluding sudden death) and whose records were linked to Medicare claims. They examined patients who received hospice care for three or more days in the last six months of life and whether these patients had multiple hospitalizations, made any emergency department visits, or were given intensive medical procedures during the same period. The study population was comprised of 1,212 participants (31.2% Black and 48% female, with a mean age of 81).

The study found that 34.9% of Black study participants who died used hospice services over the study period, compared with 46.2% of white participants. Black Americans were significantly less likely than white Americans 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 non-cancer 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 study lead author Katherine Ornstein, Ph.D., M.P.H., director of research for the Institute of Care Innovations at Home at Mount Sinai and associate professor of geriatrics and palliative medicine, Icahn School of Medicine at Mount Sinai.

The study team recommended more sustained efforts to reduce disparities in end-of-life-care by better educating and training health care providers and promoting discussion of personal values and treatment preferences for the end-of-life period in Black populations.

Hospice care has been shown to be more medically beneficial to patients during the end of life, researchers said and may cost less than emergency or invasive treatments in the final months. A 2013 study found $2,561 in Medicare savings for each patient enrolled in hospice 53-105 days before death compared with a matched, non-hospice control group. Even higher savings were seen with more common shorter enrollment periods: $2,650, $5,040 and $6,430 per patient enrolled 1-7, 8-14 and 15-30 days before death, respectively.

The authors noted that their analysis was limited to decedents with Medicare (particularly fee-for-service Medicare six months before death). Those excluded were younger, more likely to be Black, and had lower income. The results may not be generalizable to all decedents and the subgroup of patients with dementia was too small to capture meaningful differences.

Journalists may want to speak with palliative care physicians, elder care attorneys, faith leaders, and gerontologists to ask how, or whether, they discuss issues surrounding end-of-life care with patients. Ask about racial/ethnic trends they observe in their community and what efforts ― if any ― are being made to inform Black patients about the importance of advance directives and availability of hospice care. Has the increase in COVID-19 hospitalizations and deaths had any impact on these issues?

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