The healthcare that patients with dementia recieve in the last 180 days of life may look substantially different when patients are grouped by race or ethnicity.

The odds that patients have advance care planning, the proportion of those who opt to receive “all care possible,” and the likelihood of emergency department visits and receipt of hospice services can vary substantially between racial categories, according to a recent study.

Differences may also be reflected in the cost of inpatient care, the study, which was published last month in JAMA Network Open, found.

Pei-Jung Lin, PhD

For the study, Pei-Jung Lin, PhD, with Tufts Medical Center, Boston, and colleagues analyzed data from approximately 5000 Medicare beneficiaries who had died between 2000 and 2016. About 16% were non-Hispanic Black patients, 7% were Hispanic patients, and 77% were non-Hispanic White patients.

Smaller proportions of Black and Hispanic patients used hospice (38.2% and 42.9%, respectively) compared with White patients (50.5%). In an adjusted analysis, non-Hispanic Black patients were significantly less likely than White patients to use hospice (odds ratio, 0.65).

A higher proportion of Black and Hispanic patients than White patients used emergency department services (79.7%, 76.8%, and 70.7%, respectively) and inpatient services (77.3%, 77%, and 67.5%, respectively). Average inpatient expenditures were about $23,000 for Hispanic and Black patients and $14,600 for White patients, Lin’s group estimated.

The proportion of people completing advance care planning was lower among Black (20.7%) and Hispanic (21.4%) patients, which was less than half the figure for White patients (57.1%).

And among those with advance care planning, a higher proportion of Black and Hispanic patients had written instructions choosing all care possible to prolong life (20.8% and 18.4%) than did White patients (3.9%).

About 93% of White patients preferred to limit care in certain situations, whereas about 80% of Black and Hispanic patients did. Black and Hispanic patients also were less likely to withhold treatments and to forgo “extensive life-prolonging measures,” the researchers found.

“These disparities probably are not intrinsic to race and ethnicity,” Lin told Medscape Medical News. “We need to contextualize these disparities by race and ethnicity and other social determinants of health,” such as education, income, and social support.  

Prior studies have suggested that cultural, religious, or spiritual values, mistrust of the healthcare system, and a perception of hospice care as “giving up” could be factors that contribute to differences by race, Lin and her colleagues noted.

The researchers did not have information about patients’ cause of death. They also lacked sufficient numbers of Asian Americans or patients from other racial or ethnic groups, they said.

Considering Preferences

Disparities in dementia care start at diagnosis and are not limited to the care received at the end of life, Norma B. Coe, PhD, and Courtney Lee, MD, MPH, both with the Perelman School of Medicine at the University of Pennsylvania, Philadelphia, wrote in a related commentary in the journal.

Likewise, racial disparities in end-of-life care are not specific to dementia.

“Despite the growth of hospice care in the US, Black decedents receive more aggressive care, have higher end-of-life healthcare spending, and are less likely to use hospice services than White decedents,” they wrote.

Whether addressing these differences would be helpful is not entirely clear.

“For example, if Black and Hispanic patients prefer all interventions at the end of life, then not having advance care planning documents, while perhaps not optimal, may allow patients to receive their preferred default level of care and avoid miscommunication with doctors and staff,” Coe and Lee wrote.

Geography as Another Factor

Other recent research found that whether patients live in rural or urban areas may also affect access to hospice care. People with blood cancers who live in rural areas are less likely than those who live in metropolitan areas to die in a hospice facility, according to new research in Blood Advances.

“Hospice care use tends to be a marker of higher end-of-life care quality,” study author Syed Qasim Hussaini, MD, of Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University, Baltimore, said in a statement. “So, we wanted to look at how many people were dying of cancer in a particular area and not receiving hospice care, because that indicates that they probably did not receive the best care possible.”

The analysis showed that in 2019, 8.6% of deaths among patients with hematologic cancers in rural areas occurred in hospice, whereas 12%-18% of deaths in metropolitan areas did.

A Hard Sell?

Trends among patients with dementia largely agree with what Karen Bullock, PhD, has learned studying racial differences in end-of-life care and through lived experience.

Karen Bullock, PhD

Bullock, professor and head of the school of social work at North Carolina State University, Raleigh, was introduced to the field of hospice and palliative care when her mother was diagnosed with metastatic lung cancer at age 67 years.

“My mother was born and raised in rural North Carolina where there were significant racial disparities,” Bullock told Medscape Medical News. “They were those people who couldn’t go to the same school that White people went to.”

At the time of the cancer diagnosis, her mother did not have a primary care doctor, which is necessary to access hospice care.

Although patients should understand that they can get good care at the end of life — even if they have not received good medical care previously — they may face logistical hurdles and have questions and reservations, Bullock said.

“For many people like [her mother], it’s like, okay, how do we get a doctor now? How do you become comfortable with the doctor and trust that you are going to get excellent care when your entire life barriers were there?” Bullock said. “Now the healthcare system wants us to believe that we are going to get equitable care. Well, that’s a hard sell for people for whom their entire life that was not true.”

Lin’s study was supported by a grant from the National Institutes of Health (NIH). Lin disclosed ties to the Alzheimer’s Association, GlaxoSmithKline, Janssen, Genentech, and PhRMA outside the study, and co-authors disclosed financial ties to industry, government, and foundations. Coe disclosed an NIH grant. Hussaini, his co-authors, and Bullock had no relevant financial conflicts of interest.

JAMA Netw Open. Published online June 9, 2022. Full text, Editorial

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