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How do proxies perceive the prognosis of nursing home residents with advanced dementia and how do their perceptions influence care?
In this combined analysis of 2 studies, proxies estimated the prognosis of residents with advanced dementia (764 dyads) with moderate accuracy. Residents whose proxies perceived a prognosis shorter than 6 months were significantly less likely to experience burdensome interventions.
Proxies are reasonably good at estimating when residents with advanced dementia will die, and their prognostic perceptions may influence the type of care that residents receive.
Prognostication in advanced dementia is challenging but may influence care.
To determine the accuracy of proxies’ prognostic estimates for nursing home residents with advanced dementia, identify factors associated with those estimates, and examine the association between their estimates and use of burdensome interventions.
Design, Setting, and Participants
Data were combined from 2 studies that prospectively followed 764 residents with advanced dementia and their proxies in Boston-area nursing homes for 12 months: (1) the Study of Pathogen Resistance and Exposure to Antimicrobials in Dementia, conducted from September 2009 to November 2012 (362 resident/proxy dyads; 35 facilities); and (2) the Educational Video to Improve nursing home Care in End-Stage Dementia, conducted from March 2013 to July 2017 (402 resident/proxy dyads; 62 facilities). Proxies were the residents’ formally or informally designated medical decision makers.
Main Outcomes and Measures
During quarterly telephone interviews, proxies stated whether they believed the resident would live less than 1 month, 1 to 6 months, 7 to 12 months, or more than 12 months. Prognostic estimates were compared with resident survival. Resident and proxy characteristics associated with proxy prognostic estimates were determined. The association between prognostic estimates and whether residents experienced any of the following was determined: hospital transfers, parenteral therapy, tube feeding, venipunctures, and bladder catheterizations.
The residents’ mean (SD) age was 86.6 (7.3) years; 631 (82.6%) were women and 133 (17.4%) were men. Of the 764 residents, 310 (40.6%) died later than 12 months. Proxies estimated survival with moderate accuracy (C statistic, 0.67). When proxies perceived the resident would die within 6 months, they were more likely to report being asked (183 [7.2%] of 2526) vs not being asked (126 [5.0%] of 2526) about goals of care by nursing home clinicians (adjusted odds ratio [AOR], 1.94; 95% CI, 1.50-2.52). Residents were less likely to experience burdensome interventions when the proxy prognostic estimate was less than 6 months (89 [4.4%] of 2031) vs greater than 6 months (1008 [49.6%] of 2031) (AOR, 0.46; 95% CI, 0.34-0.62).
Conclusions and Relevance
Proxies estimated the prognosis of nursing home residents with advanced dementia with moderate accuracy. Having been asked about their opinion about the goal of care was associated with the proxies’ perception that the resident had less than 6 months to live and that perception was associated with a lower likelihood the resident experienced burdensome interventions.
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Corresponding author: Andrea J. Loizeau, MSc, Hebrew SeniorLife Institute for Aging Research, 1200 Centre St, Boston, MA 02131 (firstname.lastname@example.org).
Accepted for Publication: March 3, 2018.
Published Online: May 29, 2018. doi:10.1001/jamainternmed.2018.1413
Author Contributions: Drs Mitchell and Shaffer had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Loizeau, Shaffer, Hanson, Volandes, Mitchell.
Acquisition, analysis, or interpretation of data: Loizeau, Shaffer, Habtemariam, Hanson, Mitchell.
Drafting of the manuscript: Loizeau, Mitchell.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Loizeau, Shaffer, Habtemariam, Mitchell.
Obtained funding: Loizeau, Mitchell.
Administrative, technical, or material support: Hanson, Mitchell.
Supervision: Volandes, Mitchell.
Conflict of Interest Disclosures: None reported.
Funding/Support: This research was supported by the following grants from the National Institutes of Health: NIH-NIA R01 AG032982, NIH-NIA R01 AG043440, and NIH-NIA K24AG033640 (Mitchell); and grants from the Swiss National Science Foundation (P1ZHP3_171747), and the Swiss Academy of Medical Sciences (PC 22/14) (Loizeau).
Role of the Funder/Sponsor: The National Institutes of Health and the Swiss Academy of Medical Sciences played no role in the design or conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript.
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