Difficult Decisions for Older Canadians Receiving Home Care, and Why They Are So Difficult: A Web-Based Decisional Needs Assessment

Abstract

Background. Older adults receiving home care services often face decisions related to aging, illness, and loss of autonomy. To inform tailored shared decision making interventions, we assessed their decisional needs by asking about the most common difficult decisions, measured associated decisional conflict, and identified factors associated with it. Methods. In March 2020, we conducted a cross-sectional survey with a pan-Canadian Web-based panel of older adults (≥65 y) receiving home care services. For a difficult decision they had faced in the past year, we evaluated clinically significant decisional conflict (CSDC) using the 16-item Decisional Conflict Scale (score 0–100) with a >37.5 cutoff. To identify factors associated with CSDC, we performed descriptive, bivariable, and multivariable analyses using the stepwise selection method with an assumed entry and exit significance level of 0.15 and 0.20, respectively. Final model selection was based on the Bayesian information criterion. Results. Among 460 participants with an average age of 72.5 y, difficult decisions were, in order of frequency, about housing and safety (57.2%), managing health conditions (21.8%), and end-of-life care (8.3%). CSDC was experienced by 14.6% (95% confidence interval [CI]: 11.5%, 18.1%) of respondents on all decision points. Factors associated with CSDC included household size = 1 (OR [95% CI]: 1.81 [0.99, 3.33]; P = 0.27), household size = 3 (2.66 [0.78, 8.98]; P = 0.83), and household size = 4 (6.91 [2.23, 21.39]; P = 0.014); preferred option not matching the decision made (4.05 [2.05, 7.97]; P < 0.001); passive role in decision making (5.13 [1.78, 14.77]; P = 0.002); and lower quality of life (0.70 [0.57, 0.87]; P <0.001). Discussion. Some older adults receiving home care services in Canada experience CSDC when facing difficult decisions. Shared decision-making interventions could mitigate associated factors. Highlights This is the first study in Canada to assess the decisional needs of older adults receiving care at home and to identify their most common difficult decisions. Difficult decisions most frequently made were about housing and safety. The most significant decisional conflict was experienced by people making decisions about palliative care. When their quality-of-life score was low, older adults experienced clinically significant decision conflict.