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

2020 ◽  
pp. 1-7
Author(s):  
Miguel Julião ◽  
Maria Ana Sobral ◽  
Paula Calçada ◽  
Bárbara Antunes ◽  
Daniela Runa ◽  
...  

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.

2020 ◽  
pp. 1-6
Author(s):  
Miguel Julião ◽  
Maria Ana Sobral ◽  
Paula Calçada ◽  
Bárbara Antunes ◽  
Baltazar Nunes ◽  
...  

Abstract 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.


2020 ◽  
Vol 33 (1) ◽  
pp. 14-20
Author(s):  
Seçil Gülhan Güner ◽  
Arzu Erden ◽  
Nesrin Nural

The aim of this study was to determine the effect of combined drug management and an exercise program on symptoms and the happiness levels of elderly women people living at home. This interventional study included a total of 35 women, aged 65 to 74 years, who were registered at the Family Healthcare Centre. A 14-week program was combined with exercise and drug management. Pre-test and post-test evaluations results were recorded. The Edmonton Symptom Assessment Scale (ESAS), Oxford Happiness Questionnaire-Short Form (OHQ-SF) and a sociodemographic form and Follow-Up form were used for data collection. The mean ESAS points of the symptoms of pain, tiredness, sadness, and insomnia showed a significant decrease after intervention and the sense of well-being improved ( p < .001). A statistically significant increase was determined in the happiness levels of the participants after intervention. The combined program of drug management and exercise was found to be effective in raising happiness levels and reducing symptoms in elderly women.


2020 ◽  
pp. bmjspcare-2020-002606
Author(s):  
Sebastiano Mercadante ◽  
Claudio Adile ◽  
Walter Tirelli ◽  
Patrizia Ferrera ◽  
Italo Penco ◽  
...  

ObjectivesTo evaluate the presence of aberrant behaviour in a consecutive sample of patients with advanced cancer treated with opioids in a country like Italy, with its peculiar attitudes towards the use opioids. The second objective was to detect the real misuse of opioids in clinical practice.MethodsProspective observational study in two palliative care units in Italy in a period of 6 months. At admission the Edmonton Symptom Assessment Scale, the Memorial Delirium Assessment Scale, Brief Pain Inventory (BPI) and the Hospital Anxiety Depression Scale were measured. For detecting the risk of aberrant opioid use, the Screener and Opioid Assessment for Patients With Pain (SOAAP), the Opioid Risk Tool (ORT), the Cut Down-Annoyed-Guilty-Eye Opener (CAGE) questionnaire adapted to include drug use (CAGE-AID) were used. Aberrant behaviours displayed at follow-up within 1 month were recorded.ResultsOne-hundred and thirteen patients with advanced cancer were examined. About 35% of patients were SOAPP positive. There was correlation between SOAPP, CAGE-AID and ORT. SOAPP was independently associated with a lower Karnofsky level, pain intensity, poor well-being, BPI pain at the moment. No patient displayed aberrant behaviours, despite having a moderate-high risk.ConclusionsDespite a high percentage of patients showed a high risk of aberrant behaviours, no patient displayed clinical aberrant behaviours after 1 month-follow-up. This does not exempt from continuous monitoring for patients who are at risk.


2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 96-96
Author(s):  
Sarah D'Ambruoso ◽  
Anne M. Walling ◽  
Sara A. Hurvitz ◽  
Alexandra Drakaki ◽  
Jonathan Wade Goldman ◽  
...  

96 Background: Physical and emotional symptoms are highly prevalent in patients with advanced cancers and contribute to overall distress level and decreased self-reported quality of life. Oncology organizations and accrediting bodies now routinely recommend universal distress screening among patients with advanced cancers. Palliative and supportive care clinicians play an important role in implementing symptom and distress screening in cancer centers. Methods: As part of an embedded palliative care nurse practitioner (PC-NP) intervention within a large ambulatory oncology clinic, patients with advanced breast, GU, GI and lung cancer were screened for physical and emotional symptoms using the Edmonton Symptom Assessment Scale (ESAS) and treated appropriately including referral to psychology-based supportive care clinic for moderate to severe anxiety and depression or clinician-identified need. We used pre-test post-test methods to see if symptoms improved after enrollment in an embedded palliative oncology program. Results: Sixty-eight patients were screened at initial visit and 41 had follow-up screening during the first 13 months of the program with a part-time PC-NP. Only the 41 patients who had both an initial and a follow-up visit were included in the analysis. Patients were assessed using the ESAS at initial visit and at a follow-up visit an average of 5.9 weeks later (RANGE 1.0-30.6), and significant reductions were found in self-reported pain (4.0 v. 3.0), shortness of breath (3.0 v. 2.1), lack of appetite (2.8 v. 2.1), and overall well-being (4.7 v 3.8) (p < 0.05). Emotional symptoms (anxiety and depression) also decreased but were not statistically significant. Aggregate scores (emotional symptoms plus physical symptoms plus well-being) demonstrated a 6 point reduction in severity (26.2 baseline to 20.3 at follow-up, p = 0.17). Conclusions: These findings are suggestive of improvement in cancer-related symptoms and distress after enrollment in an embedded palliative oncology program. More rigorous study designs are needed to better understand the impact of the intervention on symptom management.


2018 ◽  
Vol 17 (2) ◽  
pp. 143-149 ◽  
Author(s):  
Kjersti Støen Grotmol ◽  
Hanne C. Lie ◽  
Jon Håvard Loge ◽  
Nina Aass ◽  
Dagny Faksvåg Haugen ◽  
...  

AbstractObjectiveClinical observations indicate that patients with advanced cancer and depression report higher symptom burden than nondepressed patients. This is rarely examined empirically. Study aim was to investigate the association between self-reported depression disorder (DD) and symptoms in patients with advanced cancer controlled for prognostic factors.MethodThe sample included 935 patients, mean age 62, 52% males, from an international multicentre observational study (European Palliative Care Research Collaborative – Computerised Symptom Assessment and Classification of Pain, Depression and Physical Function). DD was assessed by the Patient Health Questionnaire-9 and scored with Diagnostic and Statistical Manual of Mental Disorder-5 algorithm for major depressive disorder, excluding somatic symptoms. Symptom burden was assessed by summing scores on somatic Edmonton Symptom Assessment Scale (ESAS) symptoms, excluding depression, anxiety, and well-being. Item-by-item scores and symptom burden of those with and without DD were compared using nonparametric Mann-Whitney U tests. The relative importance of sociodemographic, medical, and prognostic factors and DD in predicting symptom burden was assessed by hierarchical, multiple regression analyses.ResultPatients with DD reported significantly higher scores on ESAS items and a twofold higher symptom burden compared with those without. Factors associated with higher symptom burden were as follows. Diagnosis: lung (β = 0.15, p < 0.001) or breast cancer (β = 0.08, p < 0.05); poorer prognosis: high C-reactive protein (β = 0.08, p < 0.05), lower Karnofsky Performance Status (β = −0.14, p < 0.001), and greater weight loss (β = −0.15, p < 0.001); taking opioids (β = 0.11, p < 0.01); and having DD (β = 0.23, p < 0.001). The full model explained 18% of the variance in symptom burden. DD explained 4.4% over and above that explained by all the other variables.Significance of resultsDepression in patients with advanced cancer is associated with higher symptom burden. These results encourage improved routines for identifying and treating those suffering from depression.


2011 ◽  
Vol 29 (9) ◽  
pp. 1151-1158 ◽  
Author(s):  
Hsien Seow ◽  
Lisa Barbera ◽  
Rinku Sutradhar ◽  
Doris Howell ◽  
Deborah Dudgeon ◽  
...  

Purpose Ontario's cancer system is unique because it has implemented two standardized assessment tools population-wide to improve care: the Edmonton Symptom Assessment System (ESAS) measures severity of nine symptoms (scale 0 to 10; 10 indicates the worst) and the Palliative Performance Scale (PPS) measures performance status (scale 0 to 100; 0 indicates death). This article describes the trajectory of ESAS and PPS scores 6 months before death. Patients and Methods Observational cohort study of cancer decedents between 2007 and 2009. Decedents required ≥1 ESAS or PPS assessment in the 6 months before death for inclusion. Outcomes were the decedents' average ESAS and PPS scores per week before death. Results Ten thousand seven hundred fifty-two (ESAS) and 7,882 (PPS) decedents were included. The mean age was 65 years, half were female, and approximately 75% of assessments occurred in cancer clinics. Average PPS score declined slowly over the 6 months before death, starting at approximately 70 and ending at 40, declining more rapidly in the last month. For ESAS symptoms, average pain, nausea, anxiety, and depression scores remained relatively stable over the 6 months. Conversely, shortness of breath, drowsiness, well-being, lack of appetite, and tiredness increased in severity over time, particularly in the month before death. More than one third of the cohort reported moderate to severe scores (ie, 4 to 10) for most symptoms in the last month of life. Conclusion In this large outpatient cancer population, trajectories of mean ESAS scores followed two patterns: increasing versus generally flat. The latter was perhaps due to available treatment (eg, prescriptions) for those symptoms. Future research should prioritize addressing symptoms that worsen over time.


2019 ◽  
Vol 15 (1) ◽  
pp. e74-e83 ◽  
Author(s):  
Sriram Yennurajalingam ◽  
Zhanni Lu ◽  
Suresh K. Reddy ◽  
EdenMae C. Rodriguez ◽  
Kristy Nguyen ◽  
...  

PURPOSE: An understanding of opioid prescription and cost patterns is important to optimize pain management for patients with advanced cancer. This study aimed to determine opioid prescription and cost patterns and to identify opioid prescription predictors in patients with advanced cancer who received inpatient palliative care (IPC). MATERIALS AND METHODS: We reviewed data from 807 consecutive patients with cancer who received IPC in each October from 2008 through 2014. Patient characteristics; opioid types; morphine equivalent daily dose (MEDD) in milligrams per day of scheduled opioids before, during, and after hospitalization; and in-admission opioid cost per patient were assessed. We determined symptom changes between baseline and follow-up palliative care visits and the in-admission opioid prescription predictors. RESULTS: A total of 714 (88%) of the 807 patients were evaluable. The median MEDD per patient decreased from 150 mg/d in 2008 to 83 mg/d in 2014 ( P < .001). The median opioid cost per patient decreased and then increased from $22.97 to $40.35 over the 7 years ( P = .03). The median MEDDs increased from IPC to discharge by 67% ( P < .001). The median Edmonton Symptom Assessment Scale pain improvement at follow-up was 1 ( P < .001). Younger patients with advanced cancer (odds ratio [OR[, 0.95; P < . 001) were prescribed higher preadmission MEDDs (OR, 1.01; P < .001) more often in the earlier study years (2014 v 2009: OR, 0.18 [ P = .004] v 0.30 [ P = .02]) and tended to use high MEDDs (> 75 mg/d) during hospitalization. CONCLUSION: The MEDD per person decreased from 2008 to 2014. The opioid cost per patient decreased from 2008 to 2011 and then increased from 2012 to 2014. Age, prescription year, and preadmission opioid doses were significantly associated with opioid doses prescribed to patients with advanced cancer who received IPC.


2013 ◽  
Vol 23 (5) ◽  
pp. 971-978 ◽  
Author(s):  
Lori Spoozak ◽  
Hsien Seow ◽  
Ying Liu ◽  
Jason Wright ◽  
Lisa Barbera

ObjectiveThe Palliative Performance Scale (PPS), which measures performance status (100 = best performance to 0 = dead), and the Edmonton Symptom Assessment System (ESAS), which measures severity of 9 symptoms, are routinely collected at ambulatory cancer visits in Ontario. This study describes the trajectory of scores in patients with gynecologic cancer in the last 6 months of life.MethodsAn observational study was conducted between 2007 and 2010. Patients had ovarian/fallopian tube, uterine, and cervical cancer and required 1 or more PPS or ESAS assessment in the 6 months before death. Outcomes were the average PPS and ESAS scores per week before death. Using logistic regression, we analyzed the odds ratio of reporting a moderate to severe score for each symptom.ResultsSeven hundred ninety-five (PPS) and 1299 (ESAS) patients were included. The average PPS score started at 70 and ended at 30, rapidly declining in the last 2 months. For ESAS symptoms, drowsiness, decreased well-being, lack of appetite, and tiredness increased in severity closer to death and were prevalent in more than 70% of patients in the last week of life. Patients with cervical cancer had increased odds of moderate to severe pain (1.74; 95% confidence interval, 1.30–2.32) compared with ovarian cancer.ConclusionsTrajectories of mean performance status had not reached the “end-of-life” phase until 1 week before death. A large proportion of the gynecologic cancer patients reported moderate to severe symptom scores as death approached. Pain was uniquely elevated in the cervical cancer cohort as death approached. Adequately managing the symptom burden appears to be a significant issue in end-of-life gynecologic care.


2009 ◽  
Vol 27 (15_suppl) ◽  
pp. e20542-e20542
Author(s):  
S. Yennurajalingam ◽  
D. L. Urbauer ◽  
R. Chacko ◽  
D. Hui ◽  
Y. A. Amin ◽  
...  

e20542 Background: Advanced cancer patients develop severe physical and psychosocial symptom clusters. There is limited data on the impact of an outpatient interdisciplinary team (IDT) consultation lead by palliative care specialists on symptom clusters. Cluster composition and consistence, response rate and predictors of response are unknown. Methods: 914 consecutive patients with advanced cancer presenting in the OSC from Jan 2003 to Oct 2008 with a complete Edmonton symptom assessment scale at the initial and follow-up visit (median 14 days, range 1–4 wks), and CAGE status (alcohol screening) were reviewed. Wilcoxon ranked sign test was used to determine whether symptoms changed over time. Principal components factor analysis with varimax rotation was used to determine clusters of symptoms at baseline and at follow-up. The number of factors calculated was determined based upon the number of eigen values that were greater than one. Results: Median age was 59 yrs, female were 46%. The most common primary cancer was Lung (19%). Baseline and follow-up visit scores (mean, SD) were: fatigue 5.7 (2.1) and 5.2 (2.2, p<0.0001), pain 4.9 (2.6) and 4.1 (2.6 p<0.0001), nausea 1.8 (2.4) and 1.7 (2.3, p=0.1), depression 2.6 (2.5) and 2.2(2.4,p<0.0001), anxiety 2.9 (2.7) and 2.4 (2.4, p<0.0001), drowsiness 3.2 (2.8) and 3.2 (2.6, p=0.7), dyspnea 2.6 (2.7) and 2.4 (2.6), p=0.0027), appetite 4.2(2.7) and 3.9 (2.7, p<0.0001), sleep 4.2 (2.6) and 3.8 (2.6, p<0.0001) and well being 4.3 (2.5) and 3.9 (2.3, p<0.0001). During the follow- up the symptom clusters varied from a 3 factor to a 2 factor model, reflecting the impact of the IDT on symptom burden. CAGE positive and CAGE negative patients had a significantly different symptom cluster model. Conclusions: Cluster composition differs when patients are assessed and managed by an IDT and among patients who screen positive for alcoholism. [Table: see text] No significant financial relationships to disclose.


2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 19-19
Author(s):  
YuJung Kim ◽  
Yi Zhang ◽  
Ji Chan Park ◽  
David Hui ◽  
Gary B. Chisholm ◽  
...  

19 Background: The Eastern Cooperative Oncology Group (ECOG) performance status (PS) is one of the most commonly used assessment tools among oncologists and palliative care specialists caring advanced cancer patients. However, the inter-observer difference between the oncologist and palliative care specialist has never been reported. Methods: We retrospectively reviewed the medical records of all patients who were first referred to an outpatient palliative care clinic in 2013 and identified 278 eligible patients. The ECOG PS assessments by palliative care specialists, nurses, and oncologists, and the symptom burden measured by Edmonton Symptom Assessment Scale (ESAS) were analyzed. Results: According to the pairwise comparisons using Sign tests, palliative care specialists rated the ECOG PS grade significantly higher than oncologists (median 0.5 grade, P<0.0001) and nurses also rated significantly higher (median 1.0 grade, P<0.0001). The assessments of palliative care specialists and nurses were not significantly different (P=0.10). Weighted kappa values for inter-observer agreement were 0.26 between palliative care specialists and oncologists, and 0.61 between palliative care specialists and nurses. Palliative care specialists’ assessments showed a moderate correlation with fatigue, dyspnea, anorexia, feeling of well-being, and symptom distress score measured by ESAS. The ECOG PS assessments by all three groups were significantly associated with survival (P<0.001), but the assessments by oncologists could not distinguish survival of patients with PS 2 from 3. Independent predictors of discordance in PS assessments between palliative care specialists and oncologists were the presence of an effective treatment option (odds ratio [OR] 2.39, 95% confidence interval [CI] 1.09-5.23) and poor feeling of well-being (≥4) by ESAS (OR 2.38, 95% CI 1.34-4.21). Conclusions: ECOG PS assessments by the palliative care specialists and nurses were significantly different from the oncologists. Systematic efforts to increase regular interdisciplinary meetings and communications might be crucial to bridge the gap and establish a best care plan for each advanced cancer patients.


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