Saturday, 15 January 2005 - 2:00 PM

This presentation is part of: Social Factors in Aging

Exploring the Needs of Frail Elders at the End of Life

Background: There is currently much interest in advancing social work practice in palliative and end-of-life care. As professional involvement in this field continues to grow, social work can play a critical role on the interdisciplinary research team in highlighting psychosocial need as a key component in end-of-life care. Research is needed that will inform practice in areas that have been identified as requiring the greatest levels of skill and competence, including; assessment of the impact of cultural, religious, and spiritual differences on the death experience; and communication of the psychosocial needs of patients to their families and members of the interdisciplinary team. Furthermore, while several studies have looked at end-of-life needs among populations in institutional settings, relatively little is known about the needs of participants in programs that focus on maintaining the frail elderly in the community.

Purpose: This paper reports the results of a descriptive exploratory study, the goal of which was to explore symptom management, support system, and advance care planning needs and preferences at the end of life among frail elders enrolled in a community Program of All-Inclusive Care for the Elderly (PACE) serving a predominantly an African-American urban population. The study was designed and implemented by an interdisciplinary team composed of members from social work, nursing, and medicine. The team served as one component of an Interdisciplinary Geriatric Health Care Research Center at a large university.

Methods: Twenty subjects participated in the study. Members of the program were identified for inclusion by program staff on the basis of competence to engage in an interview, and to give informed consent. A balanced sample of participants who had been in the program for greater than, and less than six months was recruited. A semi-structured interview elicited demographic and clinical information about medical diagnoses, and used open-ended questions to elicit information on the end of life needs and preferences.

Results: Content analysis of transcribed interviews yielded the following salient findings: At the end of life, these elders desire to remain independent in their daily lives, and in control over their health and healthcare. To meet this goal, these respondents seek emotional, social, and practical support from community agencies, medical professionals, family members, friends, neighbors, clergy, and other members of the community. In particular, family members emerged as the primary suppliers of tangible and practical support and were deemed the most likely proxy decision-makers should respondents’ independence be compromised. In making decisions about the end of life, respondents rely heavily on faith in a higher power and expressed a belief that God will take care of them and see them through the final days of their lives.

Implications: By highlighting the needs and preferences for end-of-life care among African American frail elderly in the context of a community-based setting, these findings inform culturally competent practice in similar settings serving diverse populations. Study findings also inform future interdisciplinary research efforts with the goal of extending the knowledge base and building evidenced-based practices in palliative and end of life care.

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