Providing Community-Led, Faith-Based Support to People with Advanced Illnesses and their Caregivers

People living with advanced illness and their caregivers need significant support, but often they do not know who to turn to for help or do not have access to social support. This is especially true in African American communities, where longstanding and ongoing discrimination and racism, including in the health care system, has resulted in racial health disparities that put African Americans at greater risk for serious illness and poor quality end-of-life care.

Studies show that Black people are less likely than white people to take part in advance care planning (eg, choosing who will make healthcare decisions for you when you can’t make them, choosing the kinds of medical treatment you may or may not want, making your last wishes known to your family, etc). Compared with white people, Black people experience a disproportionate burden of advanced illness, are less likely to use hospice care, more likely to have preventable hospital stays, more likely to have interactions with doctors that do not meet their needs, and are more likely to receive costly, poor-quality care that doesn’t reflect their wishes at the end of life.

In Alameda County, five denominationally diverse African-American Pastors recognized the increasing problems with serious health concerns among their congregants and poor integration of spiritual concerns into health care. In partnership with congregants, health systems, academic partners, community groups and national organizations, they created the Alameda County Care Alliance and its Advanced Illness Care Program™ (ACCA-AICP). The ACCA-AICP extends capacity for advanced illness care beyond the traditional health delivery system, bridging the gap between the health delivery systems, community organizations and faith-based communities.

The ACCA-AICP is the first community-led faith-based advanced illness care program with a holistic approach in the country, serving predominantly African American adults with advanced illnesses and their caregivers in the Bay Area. The program is designed to support all individuals facing advanced illness and caregiver support needs regardless of religion, race, creed or gender. The program links trained Care Navigators, recruited as trusted, compassionate and capable community members, with people who have advanced illnesses and their caregivers to address their needs, provide trusted resources, and empower them in navigating the healthcare system. The program’s five cornerstones are:

• Spiritual: Prayer, support group, and church ministry recommendations
• Health: Empowerment, medication lists, provider communication, safety
• Planning for Advance Care: Understanding preferences for advance care planning
• Social: Transportation, meals, housing, socialization
• Caregiving: Respite care, support groups

Since 2014, the ACCA-AICP program has trained over 20 Community Care Navigators and over 120 volunteers, engaged over 300 Pastors and faith leaders in training on advance care planning and palliative care, and connected with over 140 health care clinicians in this dynamic care partnership. More than 16,000 people have been touched by the ACCA-AICP program through church or community presentations, health system and clinic participation, regional and national conferences, and thousands of one-on-one meetings with individuals facing advanced illness or their caregivers. 80% of enrolled participants are African American adults with advanced illness and their caregivers; 72% report low socioeconomic status and more than half are age 65 or older.

Care navigators work with participants to identify goals that are specific, achievable and important to the participant. In 2020, 100% of participants completed their goal setting process with their Care Navigator. Nationally just 17% of African Americans have completed advance directives, compared with 55% of participants in the predominantly African American ACCA-AICP program. An independent evaluation of the program found that, in just its first year, Care Navigators made over 1,000 referrals to community services, successfully addressing 80% of participants’ stated needs. In addition, the program provides a workforce development opportunity through training Care Navigators, several of whom have gone on to health care careers in their communities.

ACCA has developed a Care Planning Workbook that Care Navigators use to guide participants through the steps needed for advanced planning, and an Intervention Manual Toolkit and Training process that other communities can use to get started in this work. The program is also continuing to participate in collaborative partnerships with leading health systems and clinics to serve the most vulnerable and underserved communities.

In 2018, the Coalition to Transform Advanced Care (C-TAC), a national alliance of more than 100 health systems, consumer advocacy organizations, faith-based organizations and others, presented the Founder’s Award to Pastor J. Alfred Smith Jr. for his work at Allen Temple Baptist Church in developing the ACCA-AICP and his leadership in the movement to transform advanced care. 

See the ACCA video on Palliative Care below, featuring some of their Care Navigators and community partners.