ObjectiveDignity 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.
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. Method The 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). Results Of 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 results There 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.
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.
The agonic phase is a physiological and expected state that precedes the last days or hours of life of terminally-ill patients presenting multiple signs of impending death (SID) due to multiorgan failure affecting neurocognitive, cardiovascular, respiratory and muscular functions. 1 The bedside clinical identification of SID has a profound impact on patients, families and health care professionals 1 . It can interfere with effective communication with patients and loved ones and also with complex end-of-life decisions such as aggressive and disproportionate treatments, discharge planning and enrolment on clinical care pathways. 2,3 Despite the apparent medical understanding that death is a process and not an isolated event, the existing evidence on the frequency and identification of SID in the last days or hours of life is sparse. 2 Since we were aware of the importance of such an identification, we proposed to review the frequency of SID in patients accompanied by our multidisciplinary home-based palliative care team, between December 2018 and July 2019. Therefore, we performed a retrospective descriptive analysis of the bedside SID in the last 24 hours of life of terminally ill patients, anonymously registered in our database. Of the 60 records, 26 were excluded for not having registered any SID, leaving a final number of 34 patients analyzed. The patients' clinical and demographic characteristics are presented in Table 1. We identified ten registered impending death signs: dysphagia; death rattle; the palliative performance status (PPS); decreased level of consciousness; Cheyne-Stokes respiration; livedo reticularis/peripheral cyanosis; decreased or absent urinary output; drooping of the nasolabial fold; fetor hepaticus and delirium (Table 1). The most frequently recorded signs were: dysphagia (70.5%); PPS ≤ 20 (61.7%); death rattle (58.8%); decreased level of consciousness (52.9%) and Cheyne-Stokes respiration (50.0%).The identification of bedside SID can assist clinicians in making the diagnosis of impending death, which is of utmost importance in order to minimize aggressive interventions, establishing appropriate and dignified goals of care and optimizing the quality of life of patients and those accompanying them. Although only 34/60 patients had registered SID, our results show an identification of both early and late SID, which contradicts the existing literature that shows that late signs of impending death are less frequently clinically identified and registered. 2 We are aware, having analysed the data, that it is difficult to identify and/or register SID in the team´s clinical practice,. This paves the way to future training opportunities concerning this clinical skill, in order to provide better care to terminally ill patients and their caregivers. Male, n (%) 23 (67.6) Age, years; mean (SD) 71.4 (11.8), range 50 -93 Cancer diagnosis, n (%)* 31 (91.2) Agonic phase duration, hours; mean (SD) 56.3 (42.7), range 24 -168 Frequency of SID, n (%) Dysphagia † PPS ≤ 20 † Death rattle¥ Decreased level of c...
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.