Dying in a nursing home: treatable symptom burden and its link to modifiable features of work context

Importance: High-quality care at the end of life supports freedom from pain and other potentially burdensome symptoms. Lowering symptom burden at the end of life is an urgent and achievable goal in delivering services in nursing home settings. Few published reports describe symptom burden among older adults in nursing homes; none examine links between symptom burden and modifiable features of nursing home organizational context (work environment).

Objectives: To examine the influence of organizational context on symptom burden and to compare symptom burden in the last year of life between nursing home residents with and without dementia.

Design: Retrospective analysis of longitudinal survey data.

Setting: A stratified random sample of 36 nursing homes in the Canadian provinces of Alberta, Manitoba, and Saskatchewan.

Participants: A total of 2635 residents with dementia and 1012 without dementia; 1381 front-line care staff.

Measurements: (1) Trajectories of 6 symptoms (dyspnea, pain, pressure ulcers, urinary tract infections, challenging behavior, delirium), assessed with the Resident Assessment Instrument-Minimum Data Set, version 2.0, between 2008 and 2012. All residents received assessments in each quarter of the year before death. (2) Modifiable organizational context, assessed with the Alberta Context Tool. Hierarchical mixed model, repeated measures regression, to simultaneously evaluate effects of time, dementia, and context on symptom trajectories.

Results: For all residents, prevalence of symptoms increased over time. In the last quarter before death, challenging behavior was the most frequent symptom in the dementia group (40.2%), delirium the most frequent symptom in the nondementia group (31.0%), and urinary tract infections least frequent (9.0% to 10.0%). Facilities with more favorable context had significantly higher prevalence of challenging behavior and delirium and significantly lower use of antipsychotics without diagnosis of psychosis.

Conclusion: Symptom burden increases as the end of life approaches but differs between high- and low-context facilities and between residents with and without dementia. Trajectories of treatable, burdensome symptoms at the end of life in nursing homes should be a priority focus for quality improvement. Modifiable features of organizational context that are linked to symptom burden offer new potential strategies and interventions for quality improvement.