The Faith Community and Its Potential Role in Reducing Racial Disparities in End-of-Life Care
Reverend Perrilliat had her own positive experience with hospice many years ago when her father died of cancer. She said the staff took good care of him—they were kind, caring, and compassionate. But she noticed that very few African Americans enrolled in hospice. Most of them knew little about it and the medical staff was all white. “Why don’t we see more health professionals that are people of color?” asked Perrilliat, “Asians, Latinos, African Americans—where are we in this mix? The light came on and immediately I saw it. This is ministry, this is ministry at the heart of it all.”
Perrilliat realized that houses of worship needed to become more active in end-of-life care, to overcome the historical mistrust of the medical system. Seventy percent of African Americans are religious and churches are highly respected institutions. “The faith community frankly I think is one of the last bastions of resource out there for communities where there is still some level there of trust,” said Perrilliat, “Trust is huge on this issue of advancing illness and aging and end of life. You really need to know you can get trusted information from trusted individuals that have no motives other than they want the best for you.”
The Alameda County Care Alliance—A Faith-Health Partnership
In 2014, Perrilliat partnered with five churches, and started the Alameda County Care Alliance, a faith-based non-profit providing critical support for predominantly African-American adults with advanced illness and their caregivers. It’s considered the nation’s first community-faith-health partnership of its kind. Ministers and faith leaders are trained to help their congregants prepare for the end of life and provide spiritual guidance and support related to their advanced illness.
At the heart of the ACCA’s program is its navigation system. Community care navigators are trained to provide support and connect participants with needed resources such as transportation, meals, medical services, and hospice care.
“You have to have a heart for people, a desire to help,” said Alexis Owens, one of the ACCA’s navigators, “We want to make sure they know we’re actively listening. We want them to trust us.”
Owens grew up in Oakland and has deep roots in the city’s faith community. One of her clients is 98-year-old Hannah Martin, who attends the same church. Since the death of her husband, Martin has suffered from grief, loneliness, high blood pressure, and hypertension and now, she’s fallen behind on her bills, which causes added stress. “At one point, her PG&E and water bill had escalated quite a bit,” said Owens, “We contacted those utility companies.” Owens arranged a payment plan for her overdue bills and also helped with her transportation needs. “She’s been right there when I needed her,” said Martin, “She [took] me several times to the hospital, to meetings when I had to go to church. If I needed to go some place, I’d call on Alexis.”
Each visit ends with a prayer. Owens holds Martin’s hand and gives thanks and blessings to everyone who has helped her. As she nears the end of her life, Martin knows she can turn to Owens for help. “I just love Alexis because she’s such a nice person,” said Martin, “She’s very, very helpful. She’s someone you can talk to.” Owens and the ACCA will connect her with hospice, comfort care, or whatever medical services she wants when the time comes.
The ACCA’s Success and Plans for Expansion
In the last four years, the ACCA’s hub churches have grown from five to fourteen. Its medical partners include Kaiser Permanente, U.C. Davis School of Nursing, and the Public Health Institute. “We got our first funding in 2014—in less than twelve months we had 550 people,” said Perrilliat, “Year two our numbers practically doubled. We’re well over 2,500, close to 3,000 plus folks now in our third year. So there’s no lack of need, I promise you.”
The ACCA hopes to reach beyond the African-American community and expand throughout the Bay Area and connect with other faith communities in the future. Major cities such as San Francisco, Los Angeles, Chicago, and New York have expressed interest in replicating the ACCA’s navigator system. If the model spreads nationwide, it could go a long way in reducing racial disparities in end of life care.
This is one in a two-part series examining racial disparities in accessing comfort care at the end of life.
JoAnn Mar’s two-part report was produced as a project for the USC Annenberg Center for Health Journalism’s 2018 California Fellowship.