Symptom trajectories of non-cancer patients in the last six months of life: Identifying needs in a population-based home care cohort

INTRODUCTION: The end-of-life symptom prevalence of non-cancer patients have been described mostly in hospital and institutional settings. This study aims to describe the average symptom trajectories among non-cancer patients who are community-dwelling and used home care services at the end of life. MATERIALS AND METHODS: This is a retrospective, population-based cohort study of non-cancer patients who used home care services in the last 6 months of life in Ontario, Canada, between 2007 and 2014. We linked the Resident Assessment Instrument for Home Care (RAI-HC) (standardized home care assessment tool) and the Discharge Abstract Databases (for hospital deaths). Patients were grouped into four non-cancer disease groups: cardiovascular, neurological, respiratory, and renal (not mutually exclusive). Our outcomes were the average prevalence of these outcomes, each week, across the last 6 months of life: uncontrolled moderate-severe pain as per the Pain Scale, presence of shortness of breath, mild-severe cognitive impairment as per the Cognitive Performance Scale, and presence of caregiver distress. We conducted a multivariate logistic regression to identify factors associated with having each outcome respectively, in the last 6 months. RESULTS: A total of 20,773 non-cancer patient were included in our study, which were analyzed by disease groups: cardiovascular (n = 12,923); neurological (n = 6,935); respiratory (n = 6,357); and renal (n = 3,062). Roughly 80% of patients were > 75 years and half were female. In the last 6 months of life, moderate to severe pain was frequent in the cardiovascular (57.2%), neurological (42.7%), renal (61.0%) and respiratory (58.3%) patients. Patients with renal disease had significantly higher odds for reporting uncontrolled moderate to severe pain (odds ratio [OR] = 1.21; 95% CI: 1.08 to 1.34) than those who did not. Patients with respiratory disease reported significantly higher odds for shortness of breath (5.37; 95% CI, 5.00 to 5.80) versus those who did not. Patients with neurological disease compared to those without were 9.65 times more likely to experience impaired cognitive performance and had 56% higher odds of caregiver distress (OR = 1.56; 95% CI: 1.43 to 1.71). DISCUSSION: In our cohort of non-cancer patients dying in the community, pain, shortness of breath, impaired cognitive function and caregiver distress are important symptoms to manage near the end of life even in non-institutional settings.