Background Readiness for advance care planning (ACP) and uncertainty about end-of-life (EOL) decisions in nursing home (NH) residents and their next-of-kin (NOK) could affect the effort to implement ACP and concordant EOL care in NHs. We aimed to establish the level of decisional conflict and engagement with ACP among NH residents and their NOK.
Methods We surveyed NH residents with decision-making capacity (DMC), or their NOK if they lacked DMC. The survey comprised of a 9-item ACP Engagement Survey (AES) and a 10-item low-literacy Decisional Conflict Scale (DCS). The AES assessed participants’ self-efficacy and readiness for ACP, and was modified for NOKs to reflect decision-making for both their family member and themselves. The proportion of participants reporting scores of 4 and above out of 5 for each question was reported. The DCS assessed participants’ perceptions of feeling uninformed, unclear about what they valued, unsupported and uncertain towards EOL care decision-making. Scores ranged from 0 to 100 across 4 domains, with 100 indicating extremely high conflict. The median and interquartile range (IQR) of domain scores were reported.
Results 31 participants (10 NH residents, 21 NOK) completed the survey. of the residents who completed the AES, most were confident and ready to talk to their doctor/NHS and sign documents about their care preferences (50%-90%). Similarly, most NOK were confident and ready to engage doctors and document their family member’s preferences, or do so for themselves (75%-90%). Participants reported strongest sentiments towards feeling unclear about the benefits, risks and side effects that mattered to them (median=50, IQR=25–50).
Conclusions Prior to the ACP discussion, most participants were confident and ready to discuss care preferences for themselves or their loved ones. However, they were most unclear about their values towards EOL care. Subsequent work will look at the effect of ACP discussions on these sentiments.
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