Theresa W Wong1, Sean Lang-Brown2,3, Rafael D Romo3,4, Alvin Au-Yeung5, Sei J Lee2,3, Patricia J Moran6, Jason Karlawish7, Rebecca Sudore2,3, Josephine Clayton8,9, Alexander K Smith2,3. 1. University of California San Diego, School of Medicine, San Diego, California. 2. Division of Geriatrics, Department of Medicine, University of California San Francisco, San Francisco, California. 3. San Francisco Veterans Affairs Medical Center, San Francisco, California. 4. University of Virginia, School of Nursing, Charlottesville, Virginia. 5. Des Moines University, College of Osteopathic Medicine, Des Moines, Iowa. 6. Osher Center for Integrative Medicine, Department of Medicine, University of California, San Francisco, California. 7. Department of Medicine, Division of Geriatrics, University of Pennsylvania, Philadelphia, Pennsylvania. 8. Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, Sydney, New South Wales, Australia. 9. Hammond Care Palliative and Supportive Care Service, Greenwich Hospital, Sydney, New South Wales, Australia.
Abstract
IMPORTANCE: Long-term prognosis informs clinical and personal decisions for older adults with late-life disability. However, many clinicians worry that telling patients their prognosis may cause harm. OBJECTIVE: To explore the safety of and reactions to prognosis communication in late-life disability. DESIGN: Participants estimated their own life expectancy and were then presented their calculated life expectancy using a validated prognostic index. We used a semi-structured interview guide to ask for their reactions. Qualitative data were analyzed using constant comparative analysis. Potential psychological and behavioral outcomes in response to receiving one's calculated prognosis were recorded and re-assessed 2-4 weeks later. SETTING: Community-dwelling older adults age 70+ residing in the San Francisco Bay Area. PARTICIPANTS: Thirty five older adults with a median age of 80 requiring assistance with ≥1 Activity of Daily Living. RESULTS: Self-estimates of life expectancy were similar to calculated results for 16 participants. 15 estimated their life expectancy to be longer than their calculated life expectancy by >2 years, while 4 shorter by >2 years. An overarching theme of, "fitting life expectancy into one's narrative" emerged from qualitative analysis. Discussing life expectancy led participants to express how they could alter their life expectancy (subtheme "locus of control"), how they saw their present health (subtheme "perceived health"), and their hopes and fears for the remaining years of their lives (subtheme "outlook on remaining years"). Feelings of anxiety and sadness in reaction to receiving calculated prognosis were rare. CONCLUSIONS AND RELEVANCE: About half of the disabled older adults' self-estimates of prognosis were similar to calculated estimates. Evidence of sadness or anxiety was rare. These data suggest that in most cases, clinicians may offer to discuss prognosis.
IMPORTANCE: Long-term prognosis informs clinical and personal decisions for older adults with late-life disability. However, many clinicians worry that telling patients their prognosis may cause harm. OBJECTIVE: To explore the safety of and reactions to prognosis communication in late-life disability. DESIGN:Participants estimated their own life expectancy and were then presented their calculated life expectancy using a validated prognostic index. We used a semi-structured interview guide to ask for their reactions. Qualitative data were analyzed using constant comparative analysis. Potential psychological and behavioral outcomes in response to receiving one's calculated prognosis were recorded and re-assessed 2-4 weeks later. SETTING: Community-dwelling older adults age 70+ residing in the San Francisco Bay Area. PARTICIPANTS: Thirty five older adults with a median age of 80 requiring assistance with ≥1 Activity of Daily Living. RESULTS: Self-estimates of life expectancy were similar to calculated results for 16 participants. 15 estimated their life expectancy to be longer than their calculated life expectancy by >2 years, while 4 shorter by >2 years. An overarching theme of, "fitting life expectancy into one's narrative" emerged from qualitative analysis. Discussing life expectancy led participants to express how they could alter their life expectancy (subtheme "locus of control"), how they saw their present health (subtheme "perceived health"), and their hopes and fears for the remaining years of their lives (subtheme "outlook on remaining years"). Feelings of anxiety and sadness in reaction to receiving calculated prognosis were rare. CONCLUSIONS AND RELEVANCE: About half of the disabled older adults' self-estimates of prognosis were similar to calculated estimates. Evidence of sadness or anxiety was rare. These data suggest that in most cases, clinicians may offer to discuss prognosis.
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