Addressing Racial Disparities in End-of-Life Care

Recent studies continue to bare out the existence of racial disparities in end-of-life care.

Statistics show that African Americans represent 12% of the U.S. population, but only about 8% of hospice patients. They also have a disproportionately higher rate of cancer and heart disease, which are among the top hospice diagnoses. There are several reasons for this apparent contradiction:

African-American families tend to be more wary of the American health system.
Often, medical decisions are made within the family, so there may be reluctance regarding new healthcare professionals or having an outsider in the home.
African Americans also tend to be more reluctant to withdraw life prolonging procedures such as tube feeding, organ donation, and palliative care in the hospice setting – preferring aggressive care instead.

Understanding Why

“There can be resistance, especially with people who have a strong faith history, such as patients in African-American communities,” explains Tekeima Townsend, Chaplain & Bereavement Counselor with Crossroads Hospice & Palliative Care. “Often the faith community wants to believe that healing is still possible. As chaplains, we try to help them reconcile some of those beliefs.”

It’s not a matter of giving up hope, rather helping the family prepare to deal with their loved one’s impending passing. And it isn’t just African-American communities where racial disparities in end-of-life care may be evident.

Sherri Bickley, LMSW, M.Th., who heads emotional support services for Crossroads, notes that some cultures have high regard for the family taking care of the person who is ill. As a result there may be resistance to outside caregivers coming in to help care for a family member.

“For some cultures – particularly in the Asian communities, Native Americans, and even Italians – it’s very important to maintain that physical caregiving,” Bickley says. “So it is important that caregivers on our end recognize and honor their perspective.”

Checking Beliefs at the Door

Bickley says it’s also important for hospice caregivers to be aware of how their own beliefs and experiences may affect their ability to assist a family.

One Crossroads Hospice chaplain, who was Jewish, recalled how he had been called upon to provide bereavement support to the husband of a hospice patient who had died. Many years before, this husband had been drafted into the German army during World War II at the age of fifteen. In the years that followed, this man had, in short, repudiated that early indoctrination and the stigma that had come along with it. Even so, the chaplain said, he was aware of lingering concerns in his own thought processes and understanding how to assist the husband. But thanks to the professional training and insights he’d been given, he was able to work effectively and provide the comfort and care the husband needed.

“It’s important to check your own beliefs and norms at the door, so you’re able to address the needs of the patient and family members without the interference of external judgments,” Bickley says.

“Crossroads does trainings in different cultures so we can understand how they deal with time of death and provide better care for patients and family members when we’re called upon,” she says.

“Sometimes it takes a lot of professionalism and maturity to be able to do what’s truly needed for the patient. One thing we try to remember is that every single person is their own expert on themselves and their culture. Not every single culture is the same for every person who is in it. That’s kind of our grounding philosophy.”

For more insight on end-of-life care, read the Crossroads Family and Caregivers Blog.