Abstract
Objectives
Federally mandated assessments of nursing home (NH) residents drive individualized
care planning. Residents with cognitive impairment may not be able to meaningfully
communicate their care needs and preferences during this process—a gap that may be
partially addressed by involving surrogates. We describe the prevalence of family
participation in the care planning process for long-stay NH residents with varying
degrees of cognitive impairment.
Design
Retrospective study using administrative data made available as part of an ongoing
pragmatic cluster randomized controlled trial.
Setting
A total of 292 NHs from 1 large for-profit NH system.
Participants
Long-stay NH residents in 2016.
Measurements
We identified all care planning assessments conducted in 2016 for long-stay NH residents.
Cognitive functioning was defined using the Cognitive Function Scale. The Minimum
Data Set was used to determine whether a resident, family member, and/or legal guardian
participated in the assessment process. Certification and Survey Provider Enhance
Reporting system data was used to identify facility-level correlates of family participation.
Bivariate and multivariable hierarchical regression results are presented.
Results
The analytic sample included 18,552 long-stay NH residents. Family member/representative
participation varied by degree of resident cognitive impairment; 8% of residents with
no cognitive impairment had family or representative participation in care planning
during 2016, compared with 26% of residents with severe impairment. NHs with more
social workers had greater family participation in care planning. Available NH characteristics
do not explain most of the variation in family participation between NHs (residual
intraclass correlation = .57).
Conclusions
Only a minority of family members and surrogates participate in NH care planning,
even for residents with severe cognitive impairment. The association between social
work staffing and participation suggests family involvement may be a measure of quality
improvement capacity. Our findings suggest a lack of voice for a vulnerable population
that may have implications on the quality of care received at the end of life.
Keywords
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Article info
Publication history
Published online: March 10, 2018
Footnotes
This work is supported by the National Institutes of Health (NIH) Common Fund, through a cooperative agreement (NIA 4UH3AG049619-02) from the Office of Strategic Coordination within the Office of the NIH Director. The views presented here are solely the responsibility of the authors and do not necessarily represent the official views of the National Institutes of Health.
Dr McCreedy is supported by 4T32 HS000011-30 AHRQ “National Research Service Award.”
Dr Mitchell is supported by NIH-NIA K24AG033640.
The authors declare no conflicts of interest.
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© 2018 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
