There has always been a public perception of hospice that it is only for the dying but there are also language and cultural-based difficulties that need to be openly addressed so there is no longer a barrier to those seeking quality end-of-life care for themselves and help for their families. According to the latest data from the U.S. Agency for Healthcare Research and Quality, there is a disproportional referral of Black and Hispanic patients to hospice and palliative care than for White patients. A survey published by Statista in August 2020, reported 82 percent of hospice patients in 2018 were White, compared to 8.2% for African Americans, 6.7 percent for Hispanics, 1.8 percent Asian/Pacific Islander, 0.4 percent Native American, and 0.9 percent either Other or Unknown.
Hospice providers are constantly seeking to improve access to end-of-life care among African American, Hispanic, Native American, and other minority communities. The current inequality in health care is making many providers seek ways to better understand the issues that are preventing equal end-of-life care while educating these communities on the value of hospice care. But for that to happen, there needs to be a level of trust through community partnerships and hospice providers to increase staff sensitivity training with a focus on education and awareness to better understand the cultural values and roles of family members surrounding the end of life among minority groups.
Visiting Nurse Service of New York (VNSNY) is one of those providers doing just that. According to Hospice News, it has launched Project HOPE to overcome demographic barriers to hospice care among African Americans and Hispanics in the Harlem and Bronx boroughs of New York City.
“People from minority groups are often diagnosed with diseases at late stages and have worse outcomes, leading not only to higher mortality rates but also less engagement in planning activities in end-of-life [and] under-utilization of hospice care. Important factors in disparities for accessing health care, advanced care planning and hospice utilization among minorities of color compared to whites include those based on influences of cultural and religious beliefs, lack of knowledge of hospice services or belief that hospice provides an inferior level of care. Socio-economic status can also affect access to health care providers, for example, lack of insurance with fear of cost when accessing health care,” said Ritchell Dignam, M.D., chief medical officer for VNSNY Provider Services and hospice medical director for VNSNY Hospice and Palliative Care.
An important consideration for hospices looking to expand reach into Latino communities, for example, is that there needs to be a workforce with the ability to directly communicate with Spanish-speaking populations.
“It is important that hospice and medical staff are culturally congruent with the patients and their families and understand the cultural nuances of each patient’s decision making. Having staff that have the ability to speak the language of patients helps to address a key barrier to understanding the benefits of hospice and debunking many of the myths about what hospice is and isn’t,” said Michelle Drayton, director of the VNSNY’s Project Hope program.
Dignam believes that hospices should find community partners such as trusted leaders whom they can work with to gain the confidence of minority communities. “Not only will the community leaders learn about and have access to the services and support of the hospice agency, but they can then serve as leaders and champions to help dispel misunderstandings about end-of-life care,” she continued. “They can also comfortably share and explain some of the values and benefits of hospice services within their communities and congregations as comfort is needed.”
Providers looking at ways to increase equal care for minorities, must also invest in cultural learning and create a diverse hospice workforce. Educating the public about advance care planning discussions earlier in their illness needs to continue regardless of race but by diversifying internal resources it can improve access with providers and advocates integrating community-based approaches in reaching patients of color and their families further upstream in the continuum of care.
“Staff must have competency in community engagement and provide education to patients and their loved ones. To successfully implement the model, staff who have clinical and evaluation skills such as registered nurses and hospice trained social workers are needed to evaluate patients and work with physicians and health care providers. Funding needs to support all aspects of the model to create long-term impact and create sustainable change,” said Drayton.