• Matthias Hoben, Stephanie A Chamberlain, Jennifer A Knopp-Sihota, Jeffrey W Poss, Genevieve N Thompson, and Carole A Estabrooks.
• Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada. Electronic address: mhoben@ualberta.ca.
• J Am Med Dir Assoc. 2016 Feb 1; 17 (2): 155-61.

ObjectivesBurdensome 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.DesignProof-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.SettingThirty-six nursing homes from Alberta, Manitoba, and Saskatchewan.ParticipantsA 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).MethodsBased 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.MeasurementsRAI-MDS 2.0 (symptom prevalence rating); online survey to rate symptoms and practices (impact rating).ResultsThe 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.ConclusionBurdensome 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.Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

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