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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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References

Bernardo, A (2005) Avaliação de Sintomas em Cuidados Paliativos [MSc thesis]. Lisboa: Faculdadede Medicina da Universidade de Lisboa.Google Scholar
Breitbart, W, Rosenfeld, B, Pessin, H, et al. (2000) Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 284(22), 2907–2911.CrossRefGoogle ScholarPubMed
Chochinov, HM, Wilson, KG, Enns, M, et al. (1995) Desire for death in the terminally ill. The American Journal of Psychiatry 152(8), 1185–1191.Google ScholarPubMed
Chochinov, HM, Wilson, KG, Enns, M and Lander, S (1997) “Are you depressed?” Screening for depression in the terminally ill. The American Journal of Psychiatry 154(5), 674–676.Google ScholarPubMed
Chochinov, HM, McClement, S, Hack, T, et al. (2015) Eliciting personhood within clinical practice: effects on patients, families, and healthcare providers. Journal of Pain and Symptom Management 49, 974–980.CrossRefGoogle Scholar
Hudson, PL, Kristjanson, LJ, Ashby, M, et al. (2006) Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: A systematic review. Palliative Medicine 20(7), 693–701; Review.CrossRefGoogle ScholarPubMed
Hui, D and Bruera, E (2017) The Edmonton Symptom Assessment System 25 years later: past, present, and future developments. Journal of Pain and Symptom Management 7(53), 630–643.CrossRefGoogle Scholar
Julião, M, Barbosa, A, Oliveira, F, et al. (2013) Prevalence and factors associated with desire for death in patients with advanced disease: Results from a Portuguese cross-sectional study. Psychosomatics 54(5), 451–457.CrossRefGoogle ScholarPubMed
Julião, M, Nunes, B, Sobral, MA, et al. (2016) Is it useful to ask “Está deprimido?” (“Are you depressed?”) to terminally-ill Portuguese patients? Results from outpatient research. Palliative & Supportive Care 14(2), 138–141.CrossRefGoogle ScholarPubMed
Julião, M, Oliveira, F, Nunes, B, et al. (2017) Effect of dignity therapy on end-of-life psychological distress in terminally ill Portuguese patients: A randomized controlled trial. Palliative & Supportive Care 15(6), 628–637.CrossRefGoogle ScholarPubMed
Julião, M, Courelas, C, João Costa, M, et al. (2018) The Portuguese versions of the this is MEQuestionnaire and the patient dignity question: tools for understanding and supporting personhood in clinical care. Annals of Palliative Medicine 7(Suppl 3), S187–S195.CrossRefGoogle ScholarPubMed
Julião, M, Antunes, B, Nunes, B, et al. (2020a) Measuring total suffering and will to live in an advanced cancer patient using a patient-centered outcome measure: A follow-up case study. Journal of Palliative Medicine 23(5), 733–737.CrossRefGoogle Scholar
Julião, M, Sobral, MA, Calçada, P, et al. (2020b) “Truly holistic?” Differences in documenting physical and psychosocial needs and hope in Portuguese palliative patients. Palliative & Supportive Care, 1–6 (in press).CrossRefGoogle Scholar
Monforte-Royo, C, Villavicencio-Chávez, C, Tomás-Sábado, J, et al. (2007) What lies behind the wish to hasten death? A systematic review and meta-ethnography from the perspective of patients. PLoS ONE 7(5), e37117.CrossRefGoogle Scholar
Monforte-Royo, C, Villavicencio-Chávez, C, Tomás-Sábado, J, et al. (2011) The wish to hasten death: A review of clinical studies. Psycho-Oncology 20, 795–804.CrossRefGoogle ScholarPubMed
Mystakidou, K, Rosenfeld, B, Parpa, E, et al. (2005) Desire for death near the end of life: The role of depression, anxiety, and pain. General Hospital Psychiatry 27(4), 258–262.CrossRefGoogle Scholar
Palliative Care Needs Assessment Guidance [Internet] (2014). Place of publication: The National Clinical Programme for Palliative Care, HSE Clinical Strategy and Programmes Division [revised January 2016; cited May 2020]. 13 pages. Available at: www.hse.ie/palliativecareprogrammeGoogle Scholar
Pestinger, M, Stiel, S, Elsner, F, et al. (2015) The desire to hasten death: Using Grounded Theory for a better understanding “When perception of time tends to be a slippery slope”. Palliative Medicine 29(8), 711–719.Google Scholar
Price, A, Lee, W, Goodwin, L, et al. (2011) Prevalence, course and associations of desire for hastened death in a UK palliative population: A cross-sectional study. BMJ Supportive & Palliative Care 1(2), 140–148.CrossRefGoogle Scholar
Rodríguez-Mayoral, O, Ascencio-Huertas, L, Verástegui, E, et al. (2019) The desire to hasten death in advanced cancer patients at a Mexican Palliative Care Service. Salud Mental 42(3), 103–109.CrossRefGoogle Scholar
Wilson, KG, Dalgleish, TL, Chochinov, HM, et al. (2016) Mental disorders and the desire for death in patients receiving palliative care for cancer. BMJ Supportive & Palliative Care 6, 170–177.CrossRefGoogle ScholarPubMed