The Core Bereavement Items (CBI) is a commonly used measure that assesses core grief and bereavement experiences. Although previous psychometric testing has been conducted, no studies have assessed its use specifically aimed at adults aged 50 and older or for those who lost a loved one who was hospice care. This is critical, as losses and additional obstacles in bereavement compound throughout the aging process. The present study investigated reliability, content validity, and internal structure of the CBI in bereaved adults aged 50 and older whose loved one died while in hospice care (N = 205). Associations based on age, marital status, and relationship with the died patients were consistent with preexisting research. Results of a Cronbach a reliability test found that the CBI has excellent reliability in this population. Further, content validity was established based on the judgment of subject matter experts. Exploratory factor analysis supported a 1-factor structure, with all items loading as General Grief Experiences. Based on this analysis, the CBI is a valid and reliable tool when used with adults aged 50 and older.
Background: With an aging population, and most deaths due to a nonmalignant cause, there is urgency to review the nature of end-of-life care (EoLC) to minimize gaps in service provision. Early introduction of EoLC benefits patient and carers, so identification of those at risk of dying 6 to 12 months before death is highly desirable.
Objective: To identify the most predictive patient characteristics of a risk of death within 6 to 12 months as a precursor to developing a user-friendly primary care screening tool.
Design: Retrospective case–control study.
Setting/Subjects: Australian general practice. Cases were patients aged =70 years who died in the previous 5 years. Controls were matched for age and gender. Exclusion criteria were: no available practice records for the 18 months before death (cases) and data collection (controls); no corroborated evidence of death.
Measurements: Supportive and Palliative Care Indicators Tool (SPICT) indicators of deterioration in medical records.
Results: There were 215 deaths and 267 controls. The most predictive patient characteristics of a risk of death within 6 to 12 months are: deteriorating performance status, weight loss, persistent symptoms, request for palliative care or treatment withdrawal, impaired activities of daily living, falls ± fractured hip, neurological deterioration, advanced lung disease, and estimated glomerular filtration rate <30 mL/min/1.73 m2 with deteriorating health. Our predictive model has a sensitivity and specificity of 67% and 87%, respectively, with a predictive accuracy of 78%.
Conclusions: This model predicts risk of death within 6 to 12 months with acceptable reliability in a general practice setting and has the potential to be incorporated into clinical practice and electronic records.
CONTEXT: Near the end of life when patients experience refractory symptoms, palliative sedation may be considered as a last treatment. Clinical guidelines have been developed, but they are mainly based on expert opinion or retrospective chart reviews. Therefore, evidence for the clinical aspects of palliative sedation is needed.
OBJECTIVES: To explore clinical aspects of palliative sedation in recent prospective studies.
METHODS: Systematic review conducted following PRISMA guidelines and registered at PROSPERO. PubMed, CINAHL, Cochrane, Medline and Embase were searched (January 2014-December 2019), combining "sedation", "palliative care", "prospective". Article quality was assessed.
RESULTS: Ten prospective articles were included, involving predominantly cancer patients. Most frequently reported refractory symptoms were delirium (41-83%), pain (25-65%), and dyspnoea (16-59%). In some articles, psychological and existential distress were mentioned (16-59%). Only a few articles specified the tools used to assess symptoms. Level of sedation assessment tools were: the Richmond Agitation Sedation Scale, Ramsay Sedation Scale, Glasgow Coma Scale and Bispectral Index Monitoring. The palliative sedation practice shows an underlying need for proportionality in relation to symptom intensity. Midazolam was the main sedative used. Other reported medications were phenobarbital, promethazine and anaesthetic medication- propofol. The only study that reported level of patient's discomfort as a palliative sedation outcome showed a decrease in patient discomfort.
CONCLUSIONS: Assessment of refractory symptoms should include physical evaluation with standardised tools applied and interviews for psychological and existential evaluation by expert clinicians working in teams. Future research needs to evaluate the effectiveness of palliative sedation for refractory symptom relief.
Objective: There are limited data on patient-reported outcomes near the end of life in patients with gynaecologic cancers. This study aimed to assess the symptom burden in the last 6 months of life in a real-world cohort.
Methods: Patients diagnosed with metastatic gynaecologic malignancies from 2016 to 2019 who completed the revised Edmonton Symptom Assessment System (ESASr) questionnaire within 6 months of death in a large Canadian province were identified. Patient-reported symptom scores were categorized as none to mild (0–3) and moderate to severe (4–10). Individual symptoms were subsequently grouped into physical, psychological, and total subscores. The severity of symptoms was further analyzed for any associations with age, time to death, and primary tumour site (ovarian vs. uterocervical and vulvovaginal).
Results: We identified 107 patients with gynaecologic malignancies including 59 ovarian, 29 uterocervical, and 19 vulvovaginal cancers. The median ages at diagnosis and questionnaire completion were 64 and 65 years, respectively. The median time from completing the ESASr questionnaire to death was 65 days. Overall, physical and psychological symptoms were moderate to severe in 57.9% and 40.2% of patients, respectively. Among the individual symptoms, tiredness was the most commonly reported moderate to severe symptom (74.9%), while shortness of breath was least commonly reported (31.6%). While physical (P < 0.001) and total symptom (P = 0.009) subscores were more likely to be moderate to severe in intensity as death approached, the psychological subscore (P = 0.744) had no relationship with time to death. Longer time to death was predictive of lower physical (P = 0.002) and total symptom (P = 0.002) subscores, while a primary uterocervical cancer site was associated with a lower psychological symptom subscore (P = 0.042).
Conclusions: In the real-world setting, unique symptom trajectories can emerge for patients with gynaecologic cancer near the end of life. Knowledge of these specific symptom patterns can help inform the development and delivery of targeted palliative interventions to improve quality of life for these patients.
BACKGROUND: Training in medical ethics aims to educate health care professionals in dealing with daily care ethical issues. To guarantee quality of life and spiritual and emotional support, palliative care professionals have to develop ethical and relational skills. We propose the implementation and evaluation of a specialized training programme in medical ethics dedicated to a hospital-based Palliative Care Unit.
METHODS: This study is a mixed-method before-after evaluation with data triangulation.
RESULTS: The results highlight that participants developed their ethical knowledge, and a deeper ethical awareness. They also felt more confident and motivated to widely apply ethical reflections and reasonings in their daily practice.
CONCLUSION: The participants appreciated the innovative structure of the training, especially regarding the integration of the theoretical-interactive and practical parts. However, they recommended increasing the number of concrete occasions for ethical supervision and practical application of what they learned during the programme. The training programme also has some potential practical implications: the development of advanced ethical skills within a hospital-based PC team may improve the quality of life of the patients and their families. In addition, health care professionals with advanced ethical competencies are able to educate patients and their families towards more active participation in the decision-making process.
A valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients.
Objectives: Despite a number of studies on effectiveness of palliative care, there is a lack of complex updated review of the impact of in-hospital palliative care consult service. The objective is to update information on the impact of palliative care consult service in inpatient hospital setting.
Methods: This study was a systematic literature review, following the standard protocols (Preferred Reporting Items for Systematic Reviews and Meta-Analyses, Joanna Briggs Institute tools) to ensure the transparent and robust review procedure. The effect of palliative care consult service was classified as being associated with improvement, no difference, deterioration or mixed results in specific outcomes. PubMed, Scopus, Academic Search Ultimate and SocINDEX were systematically searched up to February 2020. Studies were included if they focused on the impact of palliative care consult service caring for adult palliative care patients and their families in inpatient hospital setting.
Results: After removing duplicates, 959 citations were screened of which 49 full-text articles were retained. A total of 28 different outcome variables were extracted. 18 of them showed positive effects within patient, family, staff and healthcare system domains. No difference was observed in patient survival and depression. Inconclusive results represented patient social support and staff satisfaction with care.
Conclusions: Palliative care consult service has a number of positive effects for patients, families, staff and healthcare system. More research is needed on factors such as patient spiritual well-being, social support, performance, family understanding of patient diagnosis or staff stress.
Context: There is a lack of consensus about the appropriate moment to assess a potential wish to hasten death (WTHD) in patients with life-threatening illness, despite evidence of its positive appraisal among patients.
Objectives: To evaluate the practical potential and acceptability of questions about the WTHD in the first palliative care (PC) clinical encounter.
Design: A proof-of-concept single-arm unmasked trial.
Subjects: We enrolled 30 advanced cancer patients, 16 inpatients and 14 outpatients in their first PC clinical encounter.
Measurements: We assessed the WTHD using a semistructured interview guide, the Assessment of the Frequency and Extent of the Desire to Die (AFEDD) embedded in a multidimensional needs assessment carried out during the first PC encounter. Information about practical potential [patients consider the assessment (a) important and (b) helpful] and acceptability [patients (a) understand and (b) are not bothered by the questions] was obtained.
Results: Thirty-two patients were approached and 30 (94%) agreed to participate. The WTHD was present in two outpatients and eight inpatients. The question to assess WTHD were well understood by 94% of patients and was considered not bothersome by 87% and quite or very helpful by 80%, regardless of whether they had WTHD.
Conclusions: The results support that clinicians can integrate screening for the WTHD in usual clinical practice within a multidimensional needs assessment. Patient acceptability suggests that this as a part of patient-centered care including in the first PC clinical encounter. Further studies are needed to confirm efficacy and safety in larger and different populations.
Background: In 2007, Cancer Care Ontario began standardised symptom assessment as part of routine care using the Edmonton Symptom Assessment System (ESAS).
Aim: The purpose of this study was to evaluate the impact of ESAS on receipt of palliative care when compared with a matched group of unexposed patients.
Design: A retrospective-matched cohort study examined the impact of ESAS screening on initiation of palliative care services provided by physicians or homecare nurses. The study included adult patients diagnosed with cancer between 2007 and 2015. Exposure was defined as completing =1 ESAS during the study period. Using 4 hard and 14 propensity score-matched variables, patients with cancer exposed to ESAS were matched 1:1 to those who were not. Matched patients were followed from first ESAS until initiation of palliative care, death or end of study.
Results: The final cohort consisted of 204 688 matched patients with no prior palliative care consult. The pairs were well matched. The cumulative incidence of receiving palliative care within the first 5 years was higher among those exposed to ESAS compared with those who were not (27.9% (95% CI: 27.5% to 28.2%) versus 27.9% (95% CI: 27.5% to 28.2%)), when death is considered as a competing event. In the adjusted cause-specific Cox proportional hazards model, ESAS assessment was associated with a 6% increase in palliative care services (HR: 1.06, 95% CI: 1.04 to 1.08).
Conclusion: We have demonstrated that patients exposed to ESAS were more likely to receive palliative care services compared with patients who were not exposed. This observation provides real-world data of the impact of routine assessment with a patient-reported outcome.
CONTEXT: The will to live is an important factor to consider in the context of providing resource-oriented palliative care. Until now, there has been no major review of the existing research on this subject.
OBJECTIVES: The primary objective of this study is to summarize the state of research concerning instruments that assess the will to live. The secondary objective is to explore the theoretical models and psychometric properties of these instruments, in studies where these instruments were initially presented. The tertiary objective is to identify, among all studies where these instruments have been used, the intensity of the will to live and factors associated with it.
METHODS: We conducted a scoping review, including studies that were designed to assess the will to live among participants in all settings. Records were systematically searched from seven bibliographic databases with no date limitations up to August 2020.
RESULTS: Of the 3078 records screened, 281 were examined in detail and 111 were included in the synthesis. A total of 25 different instruments quantitatively assessing the will to live are presented. Most are single-question tools and rate intensity. The underlying concepts and psychometric properties are incompletely explained. Lack of cross-referencing is apparent. The intensity of the will to live is high, even among people with significant health impairment, and is frequently associated with different factors, such as resilience and quality of life.
CONCLUSION: A considerable yet unconnected body of studies assesses the will to live. Its assessment in clinical routine could promote resource-oriented, patient-centered care.
Background: Fatigue is one of the most distressing symptoms in patients with advanced cancer. Previous studies have shown an association between low vitamin D levels and fatigue.
Objectives: The aim of this study was to investigate the association between vitamin D levels and self-assessed fatigue in cancer patients admitted to palliative care, with focus on possible sex differences.
Design: This is a cross-sectional study.
Subjects: Baseline data from 530 screened patients, 265 women and 265 men, from the randomized placebo-controlled trial “Palliative-D” were analyzed.
Measurements: Vitamin D status was measured as 25-hydroxyvitamin D (25-OHD) and fatigue was assessed with EORTC-QLQ-PAL15 and with Edmonton Symptom Assessment System (ESAS).
Results: In men, there was a significant correlation between 25-OHD and fatigue measured with the “Tiredness question” (Q11) in EORTC-QLQ-PAL15 (p < 0.05), where higher 25-OHD levels were associated with less fatigue. No correlation between 25-OHD and fatigue was seen for women. Fatigue measured with ESAS did not show any significant association with 25-OHD levels neither in men nor in women.
Conclusion: Low vitamin D levels were associated with more fatigue in men but not in women. The study underscores the importance of subgroup analysis of men and women when evaluating the effect of vitamin D in clinical trials since the effect may differ between the sexes. The ongoing “Palliative-D study” will reveal whether vitamin D supplementation may counteract fatigue in both men and women.
Objectives: Comparison of the effects of reflexology and relaxation on pain, anxiety, and depression, and quality of life (QoL) of patients with cancer.
Design: A stratified random sample was selected, using an experimental design.
Location: An outpatient Palliative Care Unit in Attica, Greece.
Subjects: 88 patients suffering with cancer.
Interventions: The sample was randomly divided into two equal groups, a reflexology and a relaxation group. The number of interventions for both groups was six 30-min weekly sessions.
Outcome measures: The Greek Brief Pain Inventory (G-BPI) was used to measure pain, the Greek Hospital Anxiety and Depression Scale for screening anxiety and depression, and finally the Short Form Health Survey was used to measure QoL. Measurements of the above tools were taken three times in both groups as follows: preintervention, at fourth and at sixth week of intervention.
Results: Anxiety and depression for both groups exhibited a statistically significant decrease during the observation period (p < 0.001, 2 > 0.25) but at the sixth week, there was a more significant decrease in the reflexology group compared with the relaxation group (p = 0.062, 2 = 0.044 vs. p = 0.005, 2 = 0.096 for anxiety), (p = 0.006, 2 = 0.094 vs. p = 0.001, 2 = 0.138 for depression). QoL physical and mental component measurements were significantly greater for the reflexology group (p < 0.001, 2 = 0.168 and p = 0.017, 2 = 0.071, respectively). The baseline-to-sixth week G-BPI measurements were markedly decreased for the reflexology group (p = 0.207, 2 = 0.020).
Conclusions: Both interventions, relaxation and reflexology, seemed to be effective in decreasing anxiety and depression in patients with cancer. However, reflexology was found to be more effective in improving QoL (physical component) and to have a greater effect on pain management than relaxation.
The aim of this prospective study was to evaluate the feasibility and outcome of an activity assessment and intervention on a specialized palliative care ward. All patients admitted between May 2017 and April 2018 were screened for basic assessment (Step 1). Whenever possible the Tinetti-mobility test (TT) was performed by a physiotherapist. A comparison between physician and nurse-led assessment and patient report was performed (Step 2), followed by a low-intensity individually adapted activity intervention (Step 3). Physical function and global quality of life was measured at intervention start and at discharge. Home care training adherence was controlled by phone call. In total, 437 patients were admitted in one year. In 248 patients, a basic assessment was done of which 131 performed a TT. In this group, median age was 63 years. Types of cancer were gastrointestinal (n=39), lung (n=27), urogenital (n=20), non-cancer (n=26) and other (n=26). Median length of stay was 13 days. Correlations between assessment methods were low to moderate, the highest between the TT and the nurse led assessment. Six patients started the intervention. Four patients completed the intervention, of which two continued with the home based training. In all four patients, an improvement in outcomes was measured. In conclusion in around a quarter of patients on a palliative care ward a TT could be performed. The TT correlated to most with nurse led mobility assessment. In the few accrued patients, the activity intervention showed an effect.
Although patient satisfaction scores have been used in the inpatient setting for more than a decade, they are new to the hospice and home care setting. Hospice organizations began tracking Consumer Assessment of Healthcare Providers & Systems (CAHPS) scores in 2017, and beginning in 2019, the scores became accessible by the public. The purpose of this quality improvement project was to determine whether improved communication techniques had a positive effect on CAHPS scores at an outpatient nonprofit hospice organization. The intervention was divided into 2 parts, improving communication among staff and improving education provided to patients and their caregivers. This pilot project was implemented over a 4-month period, and the CAHPS scores were compared with those from the 4 months before preceding implementation.
The need for comprehensive palliative care is inevitable with the aging population. Incorporating home-based palliative care is a new frontier within healthcare. The purpose of this study was to embed home-based palliative care services within the visiting nursing association (VNA) at a health system in Pennsylvania, examining effect on quality of life and symptom control, and average number of hospital admission days. A convenience sample of patients with one or more chronic conditions was selected from the existing VNA census (n = 22). A series of topics were outlined for discussion at each weekly visit for the pilot length of up to 6 months, scripted by evidence-based guidelines from the ENABLE II: Charting Your Course booklet (). A pretest/posttest survey method was conducted by utilizing results of the Edmonton Symptom Assessment System (ESAS) and the National Comprehensive Cancer Network Distress Thermometer. The effectiveness of the program was assessed using Spearman correlation to compare the difference in scores to the number of weeks in the program. The average number of hospital admission days during the pilot period was compared with admission days 6 months before enrollment in the pilot using the Wilcoxon signed-rank test. A significant relationship was found between the number of weeks in the program and reduction in the total ESAS symptom scores (rho = -0.484, p = .022), indicating that a reduction in symptoms was significantly more likely the longer a patient was in the program. Percentage of patients hospitalized decreased from 86% during preintervention period to 32% while enrolled. There was a noted reduction in the average number of days patients spent in the hospital while enrolled in the pilot (z = -2.24, p = 0.025).
Objective: The aim of this study is to evaluate formal bereavement debriefing sessions after infant death on neonatal intensive care unit (NICU) staff.
Study Design: Prospective mixed methods study. Pre- and postbereavement debriefing intervention surveys were sent to clinical staff. Evaluation surveys were distributed to participants after each debriefing session. Notes on themes were taken during each session.
Results: More staff attended sessions (p < 0.0001) and attended more sessions (p < 0.0001) during the postdebriefing intervention epoch compared with the predebriefing epoch. Stress levels associated with the death of a patient whose family the care provider have developed a close relationship with decreased (p = 0.0123). An increased number of debriefing session participants was associated with infant age at the time of death (p = 0.03). Themes were (1) family and provider relationships, (2) evaluation of the death, (3) team cohesion, (4) caring for one another, and (5) emotional impact.
Conclusion: Bereavement debriefings for NICU staff reduced the stress of caring for dying infants and contributed to staff well-being.
Chronic complex illness/multimorbidity is a leading cause of death worldwide. Many people with chronic complex illnesses die in hospital, with the overall quality of end-of-life care requiring substantial improvement, necessitating an increase in the knowledge of the health professionals caring for them. End-of-Life-Essentials (EOLE) offers online education modules for health professionals working in acute hospitals, including one on chronic complex illness. A quantitative pre-post-evaluation analysis was undertaken on data from learners (n = 1489), who completed a questionnaire related to knowledge gained from module completion between December 2018 and November 2019. A qualitative post-evaluation analysis was also conducted using data on learner responses to a question posed between May and November 2019. Results showed a significant positive impact on learners' knowledge, skill, attitude, and confidence in providing end-of-life care to patients living with chronic complex illness. The majority (82.9%, n = 900) intended to change their practice after module completion. A total of n = 559 qualitative comments were analysed thematically, with three major themes emerging: Patient centred care and care planning, Discussion of prognosis, and Valued communication skills. This evaluation has demonstrated that healthcare professionals could benefit from this education to improve quality of care of the dying.
Background: Advanced heart failure (AHF) carries a morbidity and mortality that are similar or worse than many advanced cancers. Despite this, there are no accepted quality metrics for end-of-life (EOL) care for patients with AHF.
Methods and Results: As a first step toward identifying quality measures, we performed a qualitative study with 23 physicians who care for patients with AHF. Individual, in-depth, semistructured interviews explored physicians' perceptions of characteristics of high-quality EOL care and the barriers encountered. Interviews were analyzed using software-assisted line-by-line coding in order to identify emergent themes. Although some elements and barriers of high-quality EOL care for AHF were similar to those described for other diseases, we identified several unique features. We found a competing desire to avoid overly aggressive care at EOL alongside a need to ensure that life-prolonging interventions were exhausted. We also identified several barriers related to identifying EOL including greater prognostic uncertainty, inadequate recognition of AHF as a terminal disease and dependence of symptom control on disease-modifying therapies.
Conclusions: Our findings support quality metrics that prioritize receipt of goal-concordant care over utilization measures as well as a need for more inclusive payment models that appropriately reflect the dual nature of many AHF therapies.