Compared with other racial and ethnic groups, African-Americans are among the most religious.

BY DANIEL GAITAN | daniel@lifemattersmedia.org

Faith, distrust of the medical system and family dynamics discourage many seriously ill African-Americans from choosing hospice and palliative care services.

A new study published in the Journal of Palliative Medicine highlights the effects of church– the spiritual center for many African-Americans– on end of life-decision-making.

Churches, according to a research team led by the University of Pennsylvania’s Dr. Jerry Johnson, could become an instrument to improve vital communication between African-American patients, their families and health care providers.

“Spiritual and cultural beliefs, distrust of health systems and health professionals as an outgrowth of historical events and social patterns, and insufficient knowledge about palliative care and hospice” are among the factors cited to blame for ineffective communication about end of life care.

Despite the desire among African-Americans facing serious illnesses to minimize pain and suffering, use of palliative care and hospice remains low. African-Americans represent 13 percent of the U.S. population; however, they accounted for only 8.5 percent of hospice enrollees in 2011. They are nearly 20 percent less likely to enroll in hospice than whites.

Philadelphia Congregations Surveyed

Researchers surveyed 51 members of two African-American churches in Philadelphia– elders, deacons, health or bereavement ministers– who visit and support fellow congregants with illnesses. Participants, ranging from 45 to 80 years old, were divided into focus groups and received a $25 dollar gift card for their time.

Many said that their faith is a source of peace, calmness and strength in serious illness and suffering.

However, questions regarding family dynamics revealed conflicts. These included the denial of pending death and disagreement about decision-making authority.

When asked for their thoughts about “palliative care,” many participants were unfamiliar with the term. The same was true when asked about “hospice.” One respondent described hospice as equating to “no hope.” Another said, “When I hear somebody is in hospice, it is almost like somebody just slapped me in the face.”

Communication with health providers was described as “unsatisfactory.” Researchers found that many participants were not prepared to bridge communication gaps about end of life care and did not distinguish between goals of care and processes of care. For example, many did not understand the effects of interventions such as artificial nutrition and cardiopulmonary resuscitation.

All participants said that patients, caregivers and family members need more knowledge about end of life care, and that many congregants harbor beliefs and feelings about death that are often not communicated.

Impact Of Religion On End Of Life Care

Compared with other racial and ethnic groups, African-Americans are among the most religious. Religiosity may fuel statements portraying the use of hospice and palliative care as the opposite of having faith in God— “Only the Lord knows when I am going to die”; “No matter what it is, God is going to take care of me.”

Ronit Elk, the journal’s guest editor, told Life Matters Media that hope is integral for religious African-Americans; it is often seen as more reliable than traditional health care. “Think about the reasons why African-Americans don’t trust the medical system,” she said. “There are disparities, even at the end of life.”

Therefore, authors advise medical providers to collaborate with churches. Faith communities can emerge as instrumental in educating African-American patients and families about palliative care and hospice. Such efforts may help patients better understand that such care can align with individual values and improve quality of life.

“We found that faith beliefs can support discussions about palliative care and hospice,” researchers write. “However, we also found significant emotional distress regarding acceptance of death. Health care providers should not be surprised when the same person views death as a transition to a better life and as something to be avoided by obtaining medical interventions.”

The authors recommend that care providers learn to embrace the faith of their patients as an asset, rather than a barrier.

They also call for new care models to prepare African-American church members for end of life discussions. However, it is still unclear how such models would work. It is also unknown if African-Americans outside of the Philadelphia area would be as receptive.

– Image courtesy WikiMedia Commons