Exploring the palliative care needs of medically underserved older adults in East and Central Harlem As Americans live longer and the proportion of people 65 years of age and older grows from 14% of the population to 20% by midcentury, the growing incidence of age-related chronic illnesses will increasingly represent a critical public health concern. An estimated 80% of older adults have one chronic illness or condition (e.g., cancer, diabetes mellitus, cardiovascular disease, or Alzheimer's disease and related dementias), and half of older adults experience two or more of these conditions. Chronic conditions are frequently accompanied by high symptom burden, including pain, fatigue, mobility problems, anxiety and depression, which are associated with diminished self-rated health and quality of life, frequent use of costly healthcare services, and ultimately threaten the ability to live independently. Palliative care has emerged as an effective strategy to address the profound human and economic costs of living with chronic and advanced illness. A substantial body of evidence suggests that delivering early, high-quality palliative care to this population significantly improves patient outcomes across critical domains by reducing pain and symptoms, enhancing patient and caregiver wellbeing, lengthening survival, and containing overall health care costs for the highest need users. Despite these promising outcomes, there are significant racial and ethnic disparities in access to high quality palliative care, particularly among older adults living in low-income communities. This longitudinal, mixed-method study explores the experiences and supportive care needs of community-dwelling chronically-ill African American and Latino older adults after discharge to the community from an inpatient palliative care service.
The specific aims are to: 1) describe the needs and perceptions of chronically-ill, low- income African-American and Latino older adults living in the community, the conditions and contexts under which they access high quality palliative care, and the barriers they face in accessing and using palliative care post-discharge; 2) explore palliative care providers' perceptions of underserved older adults' needs for palliative care, and the strategies providers use to access these individuals and provide them with needed services; and 3) shed light on the mechanisms that explain palliative care disparities, and suggest strategies to advance culturally competent, measurable, and sustained improvements in coordination of comprehensive palliative care for community-dwelling African-American and Latino older adults. Overall, the study will advance our scientific understanding of palliative care disparities and help reduce multi-level barriers to meeting the needs of all community-dwelling older adults with chronic and advanced illness. Successful achievement of these aims will enhance our understanding of the barriers and facilitators to palliative care and suggest factors to expand these services to a growing population of underserved community-dwelling older adults. Findings from these exploratory data will form the basis of an R01 application to further develop and pilot innovative interventions to better meet the palliative care needs of chronically-ill, low-income African American and Latino older adults in the community.
/RELEVANCE STATEMENT This study will contribute to the understanding of underlying causes of significant racial and ethnic disparities in access to and utilization of high-quality palliative care among community-dwelling, low-income African American and Latino older adults. Grounded in a multifactorial framework of micro-, mezzo- and macro-level influences, the study integrates community-based participatory research and grounded theory approaches to elicit the unique perspectives of ethnically diverse palliative care patients and palliative care providers at a public community hospital. An increased understanding of barriers and facilitators to palliative care will contribute to development of interventions that expand this critical resource to underserved community- dwelling older adults, thus addressing serious health disparities experienced by this population.
