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APHA Scientific Session and Event Listing

Recorded presentation

Victoria H. Raveis, PhD, Dept. of Sociomedical Sciences, Columbia University, 100 Haven Ave., Suite 6D, New York, NY 10032, 212-304-5563, vhr1@columbia.edu, Peter Selwyn, MD, Department of Family and Social Medicine, Montefiore Medical Center/Albert Einstein College of Medicine, 3544 Jerome Avenue, Bronx, NY 10467, and Keville Frederickson, EdD, Department of Nursing, Lehman College, 250 Bedford Park Boulevard West, Bronx, NY 10458.

Background: Increasingly the importance of end-of-life competencies is being acknowledged in general medical care, although limited information is available on the end-of-life care needs and preferences of diverse populations. This presentation will discuss findings from an investigation funded by the National Institute of Nursing Research on the care preferences and life goals of dying individuals with HIV/AIDS. Methods: Comprehensive, in-depth interviews were conducted during the final months of the patient's life with a panel sample of low income and minority patients and their familial/informal caregiver (n=80 dyads). The caregivers also participated in a post-death interview. The patients' and caregivers' narrative accounts were subjected to content analysis to discern themes relevant to preferences and expectancies for care at the end of life. Findings: These accounts revealed that while there is concordance on a number of important end-of-life considerations, differences in values and preferences co-exist within the patient-caregiver dyad. The analyses further document that there are also inconsistencies within the dyad in whether discussion on these issues has occurred and shared understanding exists. Various barriers to communication and advance care planning also emerged in the analysis. Conclusions: Variability in shared understanding and preferences for end-of-life care within the patient caregiver dyad creates the potential for conflicted decision-making and inconsistent communications with the health care team. An appreciation of the complexity of these issues, and recognition of the necessity of including a consideration of the social content, may enhance communication between the health care team, family and patient and facilitate providing person-centered care.

Learning Objectives:

• 1. Articulate the communication and decision-making preferences of patients approaching the end of life.
• 2. Understand the range of issues and challenges patients and family members face facing end-of-life care decisions.
• 3. Recognize the relevance of end-of-life competencies in developing nursing practice plans sensitive to patients' and families needs and wishes.

Keywords: End-of-Life Care, Caregivers

Presenting author's disclosure statement:

Any relevant financial relationships? No

Recorded presentation