HAP Foundation, NORC: Structural Racism Impedes Access to Hospice, Palliative Care

Black Americans are frequently denied access to hospice and palliative care due to structural racism, and many of those communities lack sufficient information to make end-of-life care decisions, new research has found.

The HAP Foundation and NORC at the University of Chicago recently published the results of a joint research project designed to gain better understanding of the knowledge, attitudes and experiences of Black Americans around serious illness care in Chicago. Though the report, “Community-Based Study: Prioritizing Dignity and Respect in End-of-Life Care for Black Chicagoans,” has a local focus, it has national implications. The issues identified in the report exist across the country. 

“This study reveals the knowledge, beliefs and attitudes surrounding hospice and palliative care among Black Chicagoans and the findings showing disparities in the utilization of palliative care and hospice services between Black Americans and their White counterparts,” said Jocelyn Wilder, senior research scientist at NORC, said in a statement. “Our research underscores the importance of culturally responsive approaches in health care delivery and the need for collaborative efforts to bridge gaps in access to palliative care and hospice services.”

For the study, researchers conducted interviews and focus groups with Black Americans 18 and older who suffer from a serious illness and their caregivers, producing a number of key findings:

• Knowledge of palliative and hospice care varied among participants.

• Access to hospice and palliative care is perceived as lacking.
• Racism and failure to account for cultural differences exacerbated challenges for patients with serious illness and their caregivers.
• Some participants said they couldn’t receive hospice or palliative care when they needed it.
• People who were seriously ill and their caregivers had to contend with many important issues and events occurring simultaneously.
• Some had experienced racism and noticed they were treated differently than white people
• Some health care providers continued medical treatment even when the patient with a serious illness wanted to stop curative care.
• Some patients with serious illnesses didn’t get enough help with managing their pain.
• Some patients with serious illnesses had to wait a long time before they were offered hospice care.

When asked why people in their community knew little about hospice or palliative care, one participant quoted in the report said: “Because we haven’t had access to that. I’ll say the obvious, racism. Even fools will say that. We haven’t been given … the respect even in death. Because Black lives don’t matter. I mean in short, even in death they don’t think that we matter.”

Racial divides have interfered with access to hospice services nationwide. Roughly 82% of Medicare decedents in 2018 were caucasian, according to the National Hospice and Palliative Care Organization. Comparatively, that year, slightly more than 8% were African-American; 6.7% were Hispanic; 1.8% were Asian; and only 0.4% were Native American.

The research began in August 2022 with participation from NORC, the HAP Foundation and Arreola Research. The findings led to several recommendations included in the report:

• Everyone, no matter their skin color, should be treated with kindness and respect. While it’s important for healthcare providers to learn about different cultures, the most important thing is to be kind to everyone.
• Some participants said they were treated badly or disrespectfully, but they didn’t have anyone to talk to about it. If there was someone like a social worker or patient advocate who could listen to their concerns and help them, it might make their situation better.
• Health care providers should be responsible for treating all patients the same, no matter their race. There should be clear rules and consequences if they don’t treat people fairly, equitably, or respectfully.

“Dignity, love and care are the basic needs of any human being and should not be determined by skin color,” Kandis Draw, senior community health associate at The HAP Foundation, wrote in the report. “Stigmatization and discrimination of people of color have led to barriers to and a fear of health services that create gaps in the access and utilization of care. Establishing trust becomes essential to bridging these gaps.”