Hospice providers are increasingly strategizing to improve access to end-of-life care among historically underserved populations in African American, Hispanic and Native American communities. With ongoing civil unrest nationwide bringing racial inequity issues to the forefront in health care, many providers have worked to better understand the underlying issues for these disparities and demonstrate the value of hospice care to these communities at large.
Racial disparities in utilization of hospice and palliative care persist, with Black and Hispanic populations less likely to receive a referral than White patients according to recent data from the U.S. Agency for Healthcare Research and Quality. Advocates have called for providers to bridge divides of inequity and gain a deeper understanding of the underlying issues that present barriers to end-of-life care.
Visiting Nurse Service of New York (VNSNY) has launched Project HOPE to overcome demographic barriers to hospice care among African Americans and Hispanics in the Harlem and Bronx boroughs of the 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,” said Ritchell Dignam, M.D., chief medical officer for VNSNY Provider Services and hospice medical director for VNSNY Hospice and Palliative 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.”
About 82% of hospice patients in 2018 were White, compared to 8.2% for African Americans and 6.7% for Hispanics, according to the National Hospice & Palliative Care Organization. The total for all other racial or ethnic demographics totaled 3.1%.
Public perception of hospice and palliative care remains a roadblock limiting access. Additional contributing barriers include language barriers and culturally-based apprehension regarding cessation of curative treatment.
“Hospices should find community partners such as trusted leaders and champions whom they can work with to gain the confidence of minority communities,” Dignam told Hospice News. “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. 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.”
In addition to fostering trust through community partnerships, hospice providers will need to ramp up staff sensitivity training, education and awareness to better understand the cultural values and roles of family members surrounding the end of life among minority groups.
A workforce with the ability to directly communicate with underserved Spanish-speaking populations is also an important consideration for hospices looking to expand reach into Latino communities.
“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,” said Michelle Drayton, director of the VNSNY’s Project Hope program. “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.”
Providers seeking ways to close disparity gaps in care will need to invest in cultural learning and building a diverse hospice workforce. Educating the public about advance care planning discussions earlier in their illness trajectories, as well as diversifying service lines can also improve access. Service diversification has been a large focus in the hospice space, 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,” said Drayton. “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.”