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Association of Prognostic Estimates With Burdensome Interventions in Nursing Home Residents With Advanced Dementia


Loizeau, Andrea; Shaffer, Michele L; Habtemariam, Daniel A; Hanson, Laura C; Volandes, Angelo E; Mitchell, Susan L (2018). Association of Prognostic Estimates With Burdensome Interventions in Nursing Home Residents With Advanced Dementia. JAMA Internal Medicine, 178(7):922-929.

Abstract

Importance: Prognostication in advanced dementia is challenging but may influence care.

Objectives: 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.

Results: 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.

Abstract

Importance: Prognostication in advanced dementia is challenging but may influence care.

Objectives: 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.

Results: 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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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:06 Faculty of Arts > Institute of Psychology
08 Research Priority Programs > Dynamics of Healthy Aging
Dewey Decimal Classification:150 Psychology
Uncontrolled Keywords:DoktoratPsych Erstautor
Language:English
Date:1 July 2018
Deposited On:28 Aug 2018 12:38
Last Modified:29 Aug 2018 07:33
Publisher:American Medical Association (AMA)
ISSN:2168-6106
OA Status:Closed
Free access at:Publisher DOI. An embargo period may apply.
Publisher DOI:https://doi.org/10.1001/jamainternmed.2018.1413
PubMed ID:29813159
Project Information:
  • : FunderSNSF
  • : Grant IDP1ZHP3_171747
  • : Project TitleEntscheidungs-Unterstützung für Belastende Medizinische Interventionen bei Menschen mit Demenz am Lebensende (DemFACTS)
  • : FunderUS National Institutes of Health
  • : Grant IDNIH-NIA R01 AG032982, NIH-NIA R01 AG043440, and NIH-NIA K24AG033640 (Mitchell)
  • : Project Title
  • : FunderSwiss Academy of Medical Sciences
  • : Grant IDPC 22/14
  • : Project Title

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