Barriers to Palliative Care Among Diverse Chronically Ill Older Adults

Background/Purpose: Due to increasing life expectancy and decreasing mortality, a growing population of older Americans lives with chronic illnesses and conditions. Palliative care (PC), a specialty that treats serious illness and related symptoms, has been found to ameliorate symptom burden, reduce hospitalizations, and enhance quality-of-life of chronically ill patients and their families. Although increasingly accessible, PC has largely failed to reach diverse, chronically ill older adults living in the community. Low-income Latino and African American elders are significantly less likely to utilize PC and pain management services than their age-peers.

This paper presents findings from a mixed-methods study of the perspectives and supportive care needs of chronically ill older adults in East and Central Harlem, New York. Using a CBPR approach, we surveyed older adults and community providers from senior-serving organizations in order better understand and respond to unmet needs. Specifically, we aimed to explore the extent of illness-related symptoms that affect diverse community-dwelling elders; the scope and quality of community supports that address their burdensome symptoms; and perceptions and utilization of services including palliative care among elders and providers.

Methods: A community advisory board (CAB) guided the development and implementation of the cross-sectional survey. We developed a purposive sampling frame, stratified by neighborhood and type of service (senior centers, case management agencies, NORCs, and churches), to identify providers, and used snowball sampling to recruit older adults. Participants were ³65 years old with ³1 chronic condition. The team interviewed 100 older adults and 44 providers representing 33 organizations in Harlem. Interviews were audiotaped and data from verbatim transcriptions were analyzed using Grounded Theory methods by an interdisciplinary research team. Cross-case and intra-case analyses yielded several overarching themes.

Participants were a mean 72.5 years (58–75 years) of age, and the majority (83%) were female. Over half (54%) were Latino and 36% were Black/African American. Half (51%) were born in the United States, including 26% from Puerto Rico. Immigrants were primarily from Dominican Republic, Mexico, China, and Colombia.

Findings: Most elders reported burdensome illness-related symptoms, primarily pain (78.8%), fatigue (75.8%), and sleeping difficulties (53.5%), as well as depression and anxiety. Over 1/3 rated their discomfort as severe or extremely severe, 2/3 reported functional limitations, and half described increasing dependence on informal caregivers (primarily family and friends). Despite these difficulties, formal service utilization was minimal; over 1/3 (39.2%) reported unmet medical and service needs. Many older participants described adverse interactions with medical systems, and experienced bias due their race/ethnicity, age, and class. Many relied on informal, community-based supports for supportive care of their illness and symptoms. Providers reported multiple barriers elders face in accessing services, including lack of awareness of services including PC, insufficient medical insurance and reliable transportation, and reluctance to become a “burden” on family and friends.

Conclusions: Findings support the literature on high burden of chronic illnesses, lack of access and low service utilization among diverse elders. Education about services and supports including PC may help reduce burden and enhance management of chronic illnesses and symptoms among underserved elders.