The desire for death in Portuguese home-care palliative patients: Retrospective analysis of the prevalence and associated factors

Abstract Objective Desire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit. Method Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020. Results Of the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% confidence interval (CI) [0.93-0.99]); Edmonton Symptom Assessment Scale scores for drowsiness (OR = 4.05; 95% CI [1.42-11.57]), shortness of breath (OR = 3.35; 95% CI [1.09-10.31]), well-being (OR = 7.64; 95% CI [1.63-35.81]). DfD was associated with being depressed (OR = 19.24; 95% CI [3.09-+inf]); feeling anxious (OR = 11.11; 95% CI [2.51-49.29]); HADS anxiety subscale ≥11 (OR = 25.0; 95% CI [2.10-298.29]); will-to-live (OR = 39.53; 95% CI [4.85-321.96]). Patients feeling a burden were more likely to desire death (OR = 14.67; 95% CI [1.85-116.17]), as well as those who were not adapted to the disease (OR = 4.08; 95% CI [1.30-12.84]). In multivariate regression analyses predicting DfD, three independent factors emerged: higher PPS scores were associated with no DfD (aOR = 0.95; 95% CI [0.91-0.99]), while the sense of being a burden (aOR = 12.82; 95% CI [1.31-125.16]) and worse well-being (aOR = 7.72; 95% CI [1.26-47.38]) predicted DfD. Significance of results Prevalence of DfD was 20% and consistent with previous Portuguese evidence on DfD in PC inpatients. Both physical and psychosocial factors contribute to a stronger DfD.