Abstract
Objectives
Burdensome symptoms and potentially inappropriate care practices are common at the
end of life for nursing home residents. Appropriately managing symptoms and limiting
aggressive care practices is key to high-quality end-of-life care. Little research
is available, however, on the opinions of nursing home care providers about the impact
of symptoms and practices for both residents and care facilities. Our objectives were
to (1) identify common burdensome symptoms and potentially inappropriate practices
at the end of life for nursing home residents, (2) develop and assess the feasibility
of a procedure to have various groups of nursing home care providers rate impact of
symptoms and practices, and (3) generate recommendations for action and further research,
with key policy and decision makers.
Design
Proof-of-concept study. Partnered research by researchers, health professionals, and
decision makers to identify and explore the impact of burdensome symptoms and potentially
inappropriate care practices for nursing home residents at the end of life.
Setting
Thirty-six nursing homes from Alberta, Manitoba, and Saskatchewan.
Participants
A total of 6007 residents (prevalence rating); 4 medical directors, 5 directors of
care, 4 nurse practitioners, 4 registered nurses, 5 licensed practical nurses, 5 care
aides (impact rating); and 13 key policy or decision makers from Alberta, British
Columbia, and Manitoba (expert panel).
Methods
Based on a literature search and data in the Resident Assessment Instrument–Minimum
Data Set (RAI-MDS) 2.0, we generated lists of burdensome symptoms and potentially
inappropriate care practices for nursing home residents at the end of life. We rated
prevalence of those symptoms and practices in the last quarter before death as high,
medium, or low. Care providers rated the burden of symptoms and inappropriateness
of practices as high, medium, or low. Directors of care rated the unnecessary cost
of those symptoms and practices to a nursing home as high, medium, or low. We ranked
symptoms and practices based on those ratings. We discussed our findings in an interactive
expert panel and generated recommendations for action and further research.
Measurements
RAI-MDS 2.0 (symptom prevalence rating); online survey to rate symptoms and practices
(impact rating).
Results
The 3 most prevalent symptoms were urinary incontinence (79.7%), fecal incontinence
(66.7%), and responsive behaviors (63%). The 3 most prevalent practices were polypharmacy
(9+ medications; 55.2%), antipsychotic use with no diagnosis of psychosis (29.2%),
and physical restraint use (18.7%). The symptoms rated as having highest overall impact
were pain, responsive behaviors, and urinary incontinence. Practices rated as having
the most impact were polypharmacy, hospital and emergency department transitions,
and antipsychotic use with no diagnosis of psychosis.
Conclusion
Burdensome symptoms and inappropriate care practices near the end of life for residents
in nursing homes are highly prevalent. Attending to those symptoms and practices is
necessary to improve the quality of dying for nursing home residents. Our study provides
preliminary demonstration of the feasibility and importance of engaging the spectrum
of care providers in assessing the impact of symptoms and care practices on resident
experience. Experiences of this proof-of-concept study will be the basis for the development
of an indicator profile to monitor and improve quality of end-of-life care in nursing
homes in the future.
Keywords
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Article info
Publication history
Published online: December 16, 2015
Footnotes
The authors declare no conflicts of interest.
This study was funded by a Canadian Institute of Health Research grant in aid (MOP 53107). The funding agency had no role in the study design, data collection, data analysis, interpretation of the data, writing of the report, or decision to submit the article for publication.
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© 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
