OLDER ADULTS WITH ADVANCED HIV/AIDS AND THEIR INFORMAL CAREGIVERS’ COMMUNICATION ON END-OF-LIFE CARE

• Published in: Innovation in aging Vol. 1; no. suppl_1; p. 503
• Main Authors: Raveis, V.H., Carrero, M., Karus, D., Selwyn, P.A.
• Format: Journal Article
• Language: English
• Published: US Oxford University Press 01-07-2017
• Subjects: Abstracts
• ISSN: 2399-5300; 2399-5300
• DOI: 10.1093/geroni/igx004.1785

Little is known about the priorities and end-of-life care preferences of older adults living with advanced HIV/ADS, although palliative and end-of-life issues are essential aspects of their care. Even less attention has been focused on their informal support network, who provide emotional support, practical assistance and function as surrogate decision-makers. Data is drawn from a mixed methods investigation on care preferences and life goals at the end-of-life. Older (50+), minority (59%-Black, 28%-Hispanic), low-income adults living with advanced HIV/AIDS and their informal caregiver (n= 29 dyads) completed a survey and comprehensive interview in English or Spanish. Both patients and caregivers reported a high communication quality -- 83% (patients) 72% (caregivers) ‘definitely agreed’ that: “Caregiver knows kinds of treatment patient would want if patient got too sick for speak for him/herself”. The narratives substantiate that while there is concordance on a number of important care considerations, fundamental differences in choice of end-of-life care co-exists within some dyads. When present, these differences intensify caregivers’ distress associated with their execution of surrogate decision-making. The accounts also document that shared misperceptions of consensus on the care choice can occur within a dyad. Further the reports revealed the fluid and situational nature of patients’ priorities for care; resulting in some instances in the caregivers being unaware of the change. Appreciation of the complexity of these issues, and recognition of the necessity to include social context considerations, will enhance timely communication between the health care team, patient and caregiver to facilitate person-centered care.