How to Increase Awareness and Reduce Gaps in Palliative Care for Minorities
Despite dramatic growth in the availability of palliative care in the US health care system since the turn of the millennium, people from racial and ethnic minorities have not benefited equally.
According to the 2019 State-by-State Report Card on Access to Palliative Care, 72% of US hospitals (with fifty or more beds) and 94% of large hospitals (with 300 or more beds) report a palliative care team. But public hospitals – which care for around 44 million patients who are disproportionately minorities, Medicaid beneficiaries, the uninsured, or those living in disadvantaged communities[i] – are much less likely to provide the service, with only 60% reporting a palliative care team. These safety-net institutions are the preferred point of care for many minorities because of proximity, as well as their ability to address barriers such as language, culture, employment, and transportation.
"Public hospitals are much less likely to provide the service [...] with only 60% reporting a palliative care team."
Disparities in Access and Quality
Racial and ethnic disparities in health care are well-documented. From disease prevention, early detection, and curative care, patients from racial and ethnic minorities have less access and receive lower quality care. As a result, people from these minority groups are often diagnosed with late stage illness and have worse outcomes, leading not only to consistently higher mortality rates but also to greater suffering.[ii] The population of minority older adults in America is growing at a greater pace than the population of older non-Hispanic whites,[iii] and many will face the challenges of serious illness. Ensuring access to and awareness of high-quality palliative care that can meet their needs is critical.
"Ensuring access to and awareness of high-quality palliative care that can meet their needs is critical."
The challenge is two-fold: how to remedy the inadequate supply of high-quality palliative care programs for this population, and how to boost demand for and awareness of the benefits of palliative care in the context of a serious illness. More research is needed on disparities in the supply of specialty palliative care, but in addition to fewer programs in safety net hospitals, challenges include the scarcity of clinicians from minority groups, a lack of cultural competency among other clinicians, and lack of access to pain medications in minority neighborhoods.[iv]
On the demand-side, palliative care programs face cultural barriers to the acceptance of palliative care. These barriers include deep-seated distrust of the health care system – particularly amongst African Americans who have suffered generations of segregation and discrimination in health care, and been the subject of medical experiments, most notably during the Tuskegee syphilis trials.[v] In some cultures, there is fear that acknowledging an illness will hasten the course of the disease, and for religiously devout patients, many may believe that the experience and outcomes of illness should be left in God’s hands.[vi] People from ethnic minorities also experience poor communication with their doctors, and thus may be less likely to know about palliative care, or to understand that it is appropriate at any stage of disease.[vii]
Below, we provide some practical suggestions for palliative care specialists working to overcome these demand-side barriers with their minority patient populations.
1. Find Community Partners and Champions
Palliative care providers can work to gain the confidence of minority communities by seeking trusted partners and champions as referral sources. This could include developing partnerships with safety net hospitals, who may be keen to reduce the pressure on their emergency rooms by referring seriously ill patients to community-based palliative care. But it should also include religious communities, senior centers, and heritage groups.
"Palliative care providers can work to gain the confidence of minority communities by seeking trusted partners and champions as referral sources."
According to recent research on public perceptions of palliative care from Public Opinion Strategies, the vast majority of people are unaware of the existence of palliative care and the value it can provide, but most people believe it is important when it is explained to them. Community champions can serve as opinion leaders, dispelling misunderstandings and sharing the benefits of palliative care with their congregations or membership. They can also provide additional insight into the health care needs and cultural preferences of the community.
Taking this approach can help specialists uncover the right language and context to describe palliative care for minority patients and ask culturally appropriate questions that can guide the provision of care. For example, health care decision-making by Latino patients is often a matter for the whole family; people of Asian origin may not wish to acknowledge an illness at all, much less discuss their discomfort with someone outside the family; African-Americans may fear that care is being withheld from them and be reluctant to engage in advance care planning.[viii] The range of views and attitudes towards health care may vary substantially between and within racial and ethnic groups, and community partners can help clinicians navigate these nuances.
2. Provide Educational Workshops
Educational workshops with community organizations are another method for outreach and building trust with minority communities. These workshops can be hosted by community partners for their members, or programs can participate in community events such as heritage festivals. Workshops may provide valuable opportunities for one-on-one time with community members outside the health care setting. Educational workshops should be designed around the community’s pain points, such as defining and explaining the benefits of palliative care as an added layer of support in the context of living with a serious illness, advance care planning, and caregiving resources. These workshops should be inclusive and marketed to all members of the community.
3. Produce Inclusive Marketing Materials
Palliative care program materials should be tailored to the minority communities the program is hoping to serve. Programs can work with their institution’s marketing departments to develop postcards or one-pagers that describe palliative care and its value with culturally-appropriate language and images designed to resonate with a diverse community. These materials should also take into account the various health literacy levels and languages of the community, having materials translated as needed. A high percentage of older adults of Asian or Latino origin are not confident in their use of English and may prefer to receive materials in their native languages.[ix] The website getpalliativecare.org has a wealth of patient resources about palliative care that can be adapted to the needs of your community.
Palliative care clinicians are at the vanguard of caring for America’s sickest and most vulnerable patients, developing a branch of medicine that has held health care to a higher standard. By seeing and bridging the gaps in patient care, palliative care reduces suffering and improves quality of life. As the field works toward bringing palliative care everywhere, reducing disparities in access and care for people living with serious illness in minority communities will be one of our most important challenges.
"As the field works toward bringing palliative care everywhere, reducing disparities in access and care for people living with serious illness in minority communities will be one of our most important challenges."
CAPC recommends reviewing the following resources from the National Academies of Sciences Engineering Medicine (NASEM) workshop, "Improving Access to and Equity of Care for People with Serious Illness". This workshop was hosted in April 2019, with the goal of exploring the barriers that restrict access to care and affect health equity for people living with a serious illness.
As told to Saskia Siderow, Ormond House LLC
[i] Nguyen, Oanh Kieu, Anil N. Makam, and Ethan A. Halm. "National use of safety-net clinics for primary care among adults with non-medicaid insurance in the United States." PloS one 11.3 (2016): e0151610. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4814117/
[ii] Smith, Cardinale, and Otis Brawley. 2014. “Disparities in Access to Palliative Care.” Health Affairs. https://doi.org/10.1377/hblog20140730.040327.
[iii] Administration on Aging, Administration for Community Living, and US Department of Health and Human Services. April, 2018. “2018 Profile of Older Americans”
[iv] Smith, Cardinale, and Otis Brawley. 2014. “Disparities in Access to Palliative Care.” Health Affairs. https://doi.org/10.1377/hblog20140730.040327.
[v] Kennedy, Bernice Roberts, Christopher Clomus Mathis, and Angela K Woods. 2007. “African Americans and Their Distrust of the Health Care System: Healthcare for Diverse Populations.” Journal of Cultural Diversity 14 (2): 56–60. http://www.ncbi.nlm.nih.gov/pubmed/19175244.
[vi] Johnson, Kimberly S. 2013. “Racial and Ethnic Disparities in Palliative Care.” Journal of Palliative Medicine 16 (11): 1329–34. https://doi.org/10.1089/jpm.2013.9468
[vii] Smith, Cardinale, and Otis Brawley. 2014. “Disparities in Access to Palliative Care.” Health Affairs. https://doi.org/10.1377/hblog20140730.040327.
[viii] Searight, H. Russell, and Jennifer Gafford. 2005. “Cultural Diversity at the End of Life: Issues and Guidelines for Family Physicians.” American Family Physician 71 (3): 515–22.
[ix] Proctor, K., Wilson-Frederick, S. M., & Haffer, S. C. (2018). The Limited English Proficient Population: Describing Medicare, Medicaid, and Dual Beneficiaries. Health equity, 2(1), 82–89. doi:10.1089/heq.2017.0036