Community Access to Palliative Care Among Low Income, Minority Older Adults

Background/Purpose: Palliative care (PC) has emerged over the past several decades as an effective strategy to address human and economic costs of living with chronic and advanced illness. A growing literature demonstrates PC’s efficacy in ameliorating burdensome symptoms and psychosocial suffering, preventing unnecessary hospitalizations, and enhancing quality of life of older patients and family members. Although increasingly accessible, PC programs fail to reach diverse elders living with multiple chronic conditions in the community. Low income, African American, and Latino communities are significantly less likely to utilize PC and pain management services. These disparities deprive underserved older adults of humane, evidence-based care to reduce costs or physical, emotional, and spiritual suffering. 

This paper examines qualitative findings from a community needs assessment of chronically ill older residents and service providers in Harlem, New York. We explored participants’ experiences with illness-related symptoms, self-management and use of formal and informal services, and barriers to accessing palliative support services. Providers’ perceptions about the needs of chronically ill elders, and barriers they encounter in accessing PC were also investigated.

Methods: Using purposive and snowball sampling, semi-structured focused interviews were conducted with 100 chronically-ill older adults and 44 providers representing 33 senior services programs in Harlem. Data from verbatim transcriptions were analyzed using Grounded Theory methods including simultaneous data collection and analysis, theoretical saturation, and systematic coding by an interdisciplinary research team. Cross-case and intra-case analyses yielded overarching themes.

The mean age of participants was 72.5 years, ranging from 58–75 years. The majority (83%) of the sample was female. Over half were Latino, 36% were Black, and 13% were non-Hispanic white. Just over half (51%) of the elders were born in the United States, including 26% from Puerto Rico. About 35% were from the Dominican Republic. The remaining 14% were from Mexico, China, or Columbia.

Findings: Data analyses indicated hardships of living with multiple chronic illnesses significantly affected elders’ daily lives. Respondents reported living with increased pain, fatigue, and emotional suffering, which significantly affected quality-of-life. Many struggled with limited functioning, increased dependence on informal caregivers, and interactions with medical systems widely perceived as complex and unwelcoming. Many respondents ascribed service access difficulties to bias among healthcare providers that privileged white, wealthier, and younger patients over low-income older adults of color. Many service providers lacked awareness of community health/mental health resources, and described barriers minority elders face in accessing services, including lack of insurance and awareness of services, economic insecurity, competing demands, reluctance to sacrifice autonomy and become a “burden” to family and friends. Providers reported frustration with barriers and reported a need for increased services and education among chronically-ill older adults.

Conclusion/Implications: Findings indicate high burdens associated with chronic illnesses among diverse elders, who receive little formal care. Data suggest that PC integrated into existing senior and community services might be beneficial. Education about services and supports for elders and service providers might also be helpful in reducing burden and enhancing management of chronic illnesses and their associated symptoms among underserved elders of color.