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The desire for death in Portuguese home-care palliative patients: Retrospective analysis of the prevalence and associated factors
- Miguel Julião, Maria Ana Sobral, Paula Calçada, Bárbara Antunes, Daniela Runa, Catarina Samorinha, Harvey Max Chochinov, William Breitbart
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- Journal:
- Palliative & Supportive Care / Volume 19 / Issue 4 / August 2021
- Published online by Cambridge University Press:
- 28 September 2020, pp. 457-463
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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.
MethodRetrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020.
ResultsOf 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 resultsPrevalence 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.
“Truly holistic?” Differences in documenting physical and psychosocial needs and hope in Portuguese palliative patients
- Miguel Julião, Maria Ana Sobral, Paula Calçada, Bárbara Antunes, Baltazar Nunes, Ana Bragança, Daniela Runa, Paulo Faria de Sousa, Harvey Max Chochinov, Eduardo Bruera
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- Journal:
- Palliative & Supportive Care / Volume 19 / Issue 1 / February 2021
- Published online by Cambridge University Press:
- 25 June 2020, pp. 69-74
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Objective
Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation.
MethodThe retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018–January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question “Are you depressed?” (SQD), (3) the question “Do you feel anxious?” (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL).
ResultsOf the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%).
Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively).
Significance of resultsThere were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.
Adapting the Portuguese dignity question framework for adolescents: ages 10–18
- Miguel Julião, Bárbara Antunes, Ana Santos, Maria Ana Sobral, Sara Albuquerque, Filipa Fareleira, Daniela Runa, Paulo Faria de Sousa, Petra Chaves, Célia Gonçalves, Duarte Soares, Harvey Max Chochinov
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- Journal:
- Palliative & Supportive Care / Volume 18 / Issue 2 / April 2020
- Published online by Cambridge University Press:
- 27 September 2019, pp. 199-205
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Objective
Dignity therapy (DT) is well established in adult populations, and it is likely that it could benefit younger people. This study aimed to adapt the adult Portuguese DT question framework for adolescents (DT-QF-Adol) (ages 10–18).
MethodFive stages were followed: (1) the Portuguese DT-QF for adults was adapted for adolescents with the original author's collaboration, (2) an expert committee provided feedback on the adapted version, (3) an initial consensus version of the DT-QF-Adol was created, (4) expert committee consult affirmed final consensus, and (5) validation stage with a sample of 17 adolescents followed in ambulatory psychology clinic.
ResultsDT's original author endorsed the final Portuguese DT-QF-Adol, reinforcing that it captures the fundamental dimensions of DT. There was 100% agreement on the final consensus version and defined age group (10–18 years old). Twenty adolescents were invited to participate, and 17 were included after informed consent was obtained; 53% were female. The average age was 12.7 years. The interviewed adolescents reported that the DT-QF-Adol was clear, and they did not identify any ambiguity or difficulty in answering any of the questions. They assumed that this information could positively affect the way parents and friends see and cared for them, permitting others to understand their concerns and preferences. Participants felt that the DT-QF-Adol could be a good starting point for a conversation with their loved ones. Although they did not consider vital for health professionals to access their answers, they strongly felt that the DT-QF-Adol might be essential to sick adolescents and they would recommend it to others.
Significance of resultsWe developed a DT-QF of nine questions for Portuguese adolescents (DT-QF-Adol), coined Protocolo de Perguntas da Terapia da Dignidade para Adolescentes — 10–18 anos. This tool can potentially be considered a good addition for pediatric palliative care.