The Seattle African American Comfort Program (SAACP) is educating the community and health professionals about how to care for those near the end of their lives in a compassionate and culturally respectful way.
"Most of it deals with trust and communication," said Dr. Raleigh Bowden, Executive Director of the SAACP. "How [do we] set up care for the patients on their terms."
The SAACP was founded as a nonprofit organization in 2003 and its mission is "advocating, creating and coordinating culturally respectful end-of-life services for African Americans." It is comprised of 10-12 people, of which around half are paid staff members and the others are volunteers.
The SAACP's work is targeted on educating the community, training health care professionals and advocating for those in need of end of life care. The organization was born out of focus groups and sought to answer the question of why the Black community does not use hospice care at the same rate as other groups.
According to the National Hospice and Palliative Care Organization (NHPCO), 1.4 million patients received hospice care in the United States in 2007. NHPCO defined hospice care as an effort "to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes." Of those who received care, only 9 percent were from the Black community.
"We realized that a lot of work needed to be done," said Bowden. "A major issue is not having accurate information."
Bowden sees that many in the Black community do not have a positive view of hospice care. She said this idea has to do with the lack of communication between the health care system and those needing care.
"[Many] People think the hospice is where you go to die, that it's a way of killing them," said Bowden. "There is definitely a tenor of mistrust."
The mistrust of health care and hospice providers is part of the gap which the SAACP is hoping to bridge. Part of this is done by educating health care professionals about the cultural differences that exist among their patients.
"For example, some African-Americans want aggressive care all the way to death," said Bowden. "We train seasoned professionals about barriers of service."
Bowden said that while some patients may choose to not fight aggressively against terminal diseases such as some forms of cancer, many in the Black community choose to fight these diseases even when there is little or no hope.
Bowden said a possible reason for this is a culturally and social mistrust of the health care system as well a feeling that they are entitled to the best care by a society in which they have faced many inequalities.
"They [patients] often clash with health care professionals," said Bowden.
SAACP's trainings help health care professionals "learn how to communicate in a way that involves a focus on the patients wants." So far, the organization has trained workers and students from Virginia Mason, Group Health, the University of Washington and other major medical centers.
The SAACP also educates the general public about the benefits of hospice and end of life care. The organization holds educational talks and has written material available on a variety of topics including existing services, how to write a living will, hospice care and how to discuss sensitive topics with family members.
A major focus of the SAACP is to also avoid repeating what other organizations may be doing. Bowden said a premise of their organization is partnering with other organizations that "provide, or wish to do a better job in providing, culturally respectful services to African Americans." These services include hospice care, financial, legal as well as services focused on those living with HIV/AIDS.
Beyond education and training, SAACP also help students deal with bereavement and the loss of parents or close family members.
"We know it [the loss of a family member] interferes with learning," said Bowden.
It helps students and family members deal with loss by providing access to grief and support groups. SAACP also works as an advocate for those in need of hospice care, the organization provides assessment and referral services without charge.
While the SAACP focus is on end of life care, Bowden sees their organization as helping to begin a broader change in terms of culturally respective care.
"We hope our work builds a more trusting relationship," said Bowden. "We hope it raises a conversation not only with end of life care, but across the health care system."
For more information on the SAACP, visit their website at http://www.saacp.org
