A coalition of health care, government, and community stakeholders has banded together to help minorities in New Jersey access hospice and palliative care, as well as advance care planning. The Goals of Care Coalition of New Jersey has begun a new educational program to help the public, and minorities in particular, understand the health care options available to them at the end of life.
Minority patients have been underrepresented in hospice care since the inception of the Medicare benefit in 1983. In 2016, only 8 percent of the 1.43 million Medicare beneficiaries who received hospice care were African American; 2.1 percent were Hispanic; 1.2 percent were Asian, and 0.4 percent were Native American.
“The causes for this are complicated. Health care providers may not always be aware of the communication style or preferences of patients from different ethnic and cultural backgrounds, which can unintentionally create obstacles to advance care planning,” said David Barile, M.D., the coalition’s medical director. “As a result, too many of New Jersey’s minority patients suffer, experiencing unnecessary or unwanted hospitalizations at the end of life.”
Cultural and religious beliefs have a profound effect on end-of-life care decisions. Among some religious groups, an emphasis on preserving life at all costs sometimes leads patients to choose to forego hospice in favor of more aggressive treatment, according to the National Hospice and Palliative Care Association (NHPCO). Some cultures also emphasize family caregiving over bringing health care professionals into the home.
In addition, the public across all demographic groups often has a poor understanding of what hospice and palliative care actually are, as do some health care providers, according to NHPCO. Educational efforts can help patients, including minorities, access the care they need while helping hospice providers build their patient census.
New Jersey has the most ethnically diverse health care provider population and the third most diverse patient population of any state, according to the coalition. The group recently received a Robert Wood Johnson Foundation Grant grant to finance health care provider and patient education in New Jersey communities with a predominantly minority population.
The coalition will sponsor educational events at area hospitals, skilled nursing facilities, and assisted living communities focused on the benefits of hospice and palliative care as well as guidance on advance care planning. They will provide an advance planning guidebook and a four-step care planning model in multiple languages.
Patient and provider education has proven effective at increasing the likelihood that patients will participate in advance care planning conversations, as well as enter palliative care and hospice when it becomes appropriate, according to two studies published this month in the Journal of the American Medical Association-Internal Medicine and Journal of the American Medical Association-Oncology.
“A focused effort to educate minority patients and the doctors who treat them will support and promote culturally-sensitive conversations about advance care planning and documentation of patients wishes, and will make it possible to improve the status quo regarding end-of-life care among New Jersey’s minority patients,” said Lori Feldstein, CEO and executive director of the coalition.