By Heather O’Donnell
Palliative care focuses on decreasing the emotional, mental, physical, social, and spiritual distress of individuals with life-threatening illnesses and their caregivers to improve their quality of life (Cain et al., 2018). About 56.8 million people worldwide, including 25.7 million people in their last year of life, require palliative care. However, only about 14% of those people currently receive it (WHO, 2020).
Palliative care inequities exist for historically underserved populations, such as LGBTQ+ individuals, American Indians/Native Americans, Hispanics/Latinos/Latinx, Black/African Americans, and Asian American, Native Hawaiian, and other Pacific Islanders (Compassion & Choices, 2022). Other underserved populations who face exclusion from quality end-of-life care and palliative care include individuals with learning disabilities, homeless and poverty-stricken individuals, individuals living in remote and rural areas, and prisoners (Hospice UK, 2023). These historically underserved communities are less likely to have knowledge about and access to advance care planning, palliative care, pain management, and hospice care (Compassion & Choices, 2022). As the global need for palliative care continues to increase due to population aging and the increasing prevalence of noncommunicable diseases, public health professionals and policymakers must take measures to reduce inequities in palliative care access and quality.
Palliative care programs should conduct a community assessment in alignment with the National Clinical Practice (NCP) Guidelines for Quality Palliative Care of the geographic, demographic, and disease-specific communities their programs are serving and not serving, as well as a review of the social determinants of health in these communities (Dahlin, 2021; National Coalition for Hospice and Palliative Care, 2019). Some examples of social determinants of health that can hinder access to palliative care include poverty, health literacy, home safety, transportation availability, and access to food and medication (NASEM, 2019).
Limited access to quality palliative care delays the diagnostic and treatment process, which leads to higher noncommunicable disease rates among individuals who experience health inequities (Williams et al., 2019; NASEM, 2019). Identifying and addressing the social determinants of health will inform the implementation of interventions that improve health equity and improve access to palliative care for underserved populations.
To increase the quality of palliative care, palliative care programs should promote basic palliative care education and skill building for all providers and strengthen community partnerships to care for underserved communities (NASEM, 2019). Community health staff members and providers should make palliative care services available at community centers, public health clinics, faith-based programs, schools, and the workplace to meet the needs and align with the cultural norms of each community (NASEM, 2019). Another way to promote health equity in access to palliative care is to increase the diversity of the healthcare profession. This will benefit patients with serious illnesses who belong to racial and ethnic minority groups, as well as those who experience socioeconomic disadvantage (Ryerson, 2022). Additionally, healthcare providers should receive education and training to facilitate advance care planning and discuss treatment preferences for palliative care for Black and Hispanic patients before they develop illnesses (Heath, 2020).
Public health professionals can improve access to quality palliative care among underserved populations by identifying and intervening on the social determinants of health, conducting community needs assessments, promoting palliative care education and training, and promoting cultural diversity in the healthcare profession. Due to workforce shortages, the increasing demands of the aging population, and the rising prevalence of behavioral and mental health conditions, strategies to improve health equity must be multidimensional (Dahlin, 2021).
The improvement of health equity will require the development of a new healthcare model that promotes wellness, prevents illness, and improves overall public health. Although the World Health Organization has followed a public health model for developing palliative care in developing countries, the United States has followed a medical model, where care begins when an individual is sick (Callaway et al., 2018). Shifting from a focus of illness to care that improves public health will promote health equity and allow underserved populations to benefit from palliative care.
Heather O’Donnell is a recent graduate of the Bloustein School of Planning and Public Policy, having earned a bachelor of science degree in Public Health.
Cain, C. L., Surbone, A., Elk, R., & Kagawa-Singer, M. (2018). Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making. Journal of Pain and Symptom Management, 55(5), 1408-1419. 10.1016/j.jpainsymman.2018.01.007
Callaway, M. V., Connor, S. R., & Foley, K. M. (2018). World Health Organization Public Health Model: A Roadmap for Palliative Care Development. Journal of Pain and Symptom Management, 55(2), S6-S13. 10.1016/j.jpainsymman.2017.03.030
Cleland, C. L., Tully, M. A., Kee, F., & Cupples, M. E. (2012). The effectiveness of physical activity interventions in socio-economically disadvantaged communities: A systematic review. Preventive Medicine, 54(6), 371-380. 10.1016/j.ypmed.2012.04.004
Clinical Practice Guidelines for Quality Palliative Care, 4th Edition. (2019), National Coalition For Hospice & Palliative Care. https://www.nationalcoalitionhpc.org/ncp/
Dahlin, C. (2021). How to Promote Health Equity in Palliative Care by Collaborating with Nursing. Center to Advance Palliative Care. https://www.capc.org/blog/how-nurses-can-help-promote-health-equity-in-palliative-care/
Healthcare Equity at the End of Life. (2022, Compassion & Choices. https://www.compassionandchoices.org/our-issues/healthcare-equity-end-of-life
Heath, S. (2020). Healthcare Disparities Emerge in End-of-Life Hospice Care Access. Patient Care Access News. https://patientengagementhit.com/news/healthcare-disparities-emerge-in-end-of-life-hospice-care-access
National Academies of Sciences, Engineering, and Medicine, Division, H. a. M., Policy, B. o. H. S., Services, B. o. H. C., Illness, Roundtable on Quality Care for People with Serious, Alper, J., Cruz, S. M., & Graig, L. (2019). Improving Access to and Equity of Care for People with Serious Illness. National Academies Press. 10.17226/25530
Palliative Care. (2020). World Health Organization. https://www.who.int/news-room/fact-sheets/detail/palliative-care#:~:text=Each%20year%2C%20an%20estimated%2056.8,palliative%20care%20currently%20receive%20it.
Promoting equality in end of life care. (2023). Hospice UK. https://www.hospiceuk.org/our-campaigns/policy-and-influencing/influencing-parliamentarians/promoting-equality-end-life-care
Ryerson, L. M. (2022). Prioritizing Health Equity in Palliative and End-of-Life Care. Generations (San Francisco, Calif.), 46(3), 1-9. https://www-ingentaconnect-com.proxy.libraries.rutgers.edu/content/asag/gen/2022/00000046/00000003/art00012
Social Determinants of Health. (2018). World Health Organization. https://www.who.int/teams/social-determinants-of-health
Williams, D. R., Lawrence, J. A., & Davis, B. A. (2019). Racism and Health: Evidence and Needed Research. Annual Review of Public Health, 40(1), 105-125. 10.1146/annurev-publhealth-040218-043750