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

Published online by Cambridge University Press:  28 September 2020

Miguel Julião Open the ORCID record for Miguel Julião [Opens in a new window] ,
Maria Ana Sobral ,
Paula Calçada ,
Bárbara Antunes Open the ORCID record for Bárbara Antunes [Opens in a new window] ,
Daniela Runa ,
Catarina Samorinha ,
Harvey Max Chochinov  and
William Breitbart
Miguel Julião*
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Maria Ana Sobral
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Paula Calçada
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Bárbara Antunes
Affiliation:
Primary Care Unit, Department of Public Health and Primary Care, Cambridge, University of Cambridge, Cambridge, UK Centro de Estudos e Investigação em Saúde da Universidade de Coimbra, Coimbra, Portugal Faculty of Medicine, University of Porto, Porto, Portugal Department of Midwifery and Palliative Care, King's College London, Florence Nightingale School of Nursing, London, UK
Daniela Runa
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Catarina Samorinha
Affiliation:
Sharjah Institute for Medical Research, University of Sharjah, Sharjah, United Arab Emirates
Harvey Max Chochinov
Affiliation:
Department of Psychiatry, Research Institute of Oncology and Hematology, Cancer Care Manitoba, Manitoba, Canada
William Breitbart
Affiliation:
Jimmie C. Holland Chair in Psychiatric Oncology, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY
*
Author for correspondence: Miguel Julião, Equipa Comunitária de Suporte em Cuidados Paliativos deSintra, 2635-364Rio de Mouro, Sintra, Portugal. E-mail: migueljuliao@gmail.com
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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.

Keywords

Associated factorsDesire for deathPrevalenceHome-based palliative carePalliative patientsRetrospective study
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 4 , August 2021 , pp. 457 - 463
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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