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Background: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. Aim: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. Design: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%–79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. Setting/participants: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. Results: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. Conclusions: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe. [ABSTRACT FROM AUTHOR]

Background: Behavioral theories are often used to better understand and change health-promoting behaviors and develop evidencebased interventions. However, researchers often lack of knowledge on how to use these theories in palliative care and people confronted with serious illness. Clear examples or guidelines are needed. Aim: To describe how behavioral theories can be used to gain insight into critical factors of health-promoting behavior in seriously ill people, using a case example of “starting a conversation about palliative care with the physician” for people with incurable cancer. Methods: We used a health promotion approach. Step 1: We chose a theory. Step 2: We applied and adapted the selected theory by performing interviews with the target population which resulted in a new behavioral model. Step 3: We operationalized the factors of this model. An expert group checked content validity. We tested the questionnaire cognitively. Step 4: We conducted a survey study and performed logistic regression analyses to identify the most important factors. Results: Step 1: We selected the Theory of Planned Behavior. Step 2: This theory was applicable to the target behavior, but needed extending. Step 3: The final survey included 131 items. Step 4: Attitudinal factors were the most important factors associated with the target behavior of starting a conversation about palliative care with the physician. Conclusions: This paper describes a method applied to a specific example, offering guidance for researchers and practitioners interested in understanding and changing a target behavior and its factors in seriously ill people. [ABSTRACT FROM AUTHOR]

Background: Advance care planning can be challenging because discussing end-of-life care often has negative connotations. Gamification is a novel approach to encourage advance care planning conversations in Western culture. Aim: To co-design a game with multiple stakeholders to promote advance care planning in Chinese communities. Design: A two-phase design guided by the Medical Research Council framework for developing complex interventions was adopted between May 2019 and August 2020. In phase I, a game prototype was developed based on literature review, expert consultation and end-user consultation. In Phase II, the game prototype was tested among end-users and refined according to their feedback and expertise of a multi-disciplinary team through an iterative process. Setting/participants: Experts in the field of aged care, palliative care, life education and game development and Chinese community-dwelling adults aged 60 years or older. Results: A board game called ' The Five Tastes Found in a Grocery Store ' was developed. The game design was shaped by Bandura's Self-efficacy theory and feedback from experts and end-users. The participants generally found the gaming experience enjoyable and appreciated the opportunity to discuss end-of-life care openly. Conclusions: This study is the first to develop an evidence-informed, theory-based, culturally sensitive game for promoting advance care planning in the Chinese community using a co-design approach. [ABSTRACT FROM AUTHOR]

Background: Severe grief is highly distressing and prevalent up to 1 year post-death among people bereaved during the first wave of COVID-19, but no study has assessed changes in grief severity beyond this timeframe. Aim: Understand the trajectory of grief during the pandemic by reassessing grief symptoms in our original cohort 12–18 months post-death. Design: Prospective matched cohort study. Settings/participants: Family members of decedents who died in an acute care hospital between November 1, 2019 and August 31, 2020 in Ottawa, Canada. Family members of patients who died of COVID (COVID +ve) were matched 2:1 with those who died of non-COVID illness (COVID −ve) during pandemic wave 1 or immediately prior to its onset (pre-COVID). Grief was assessed using the Inventory of Complicated Grief (ICG). Results: Follow-up assessment was completed by 92% (111/121) of family members in the initial cohort. Mean ICG score on the 12–18-month assessment was 19.9 (SD = 11.8), and severe grief (ICG > 25) was present in 28.8% of participants. One-third (33.3%) had either a persistently high (>25) or worsening ICG score (⩾4-point increase between assessments). Using a modified Poisson regression analysis, persistently high or worsening ICG scores were associated with endotracheal intubation in the deceased, but not cause of death (COVID +ve, COVID −ve, pre-COVID) or physical presence of the family member in the final 48 h of life. Conclusions: Severe grief is a substantial source of psychological morbidity in the wake of the COVID-19 pandemic, persisting more than a year post-death. Our findings highlight an acute need for effective and scalable means of addressing severe grief. [ABSTRACT FROM AUTHOR]

Background: The evolution of the provision of palliative care specialised services is important for planning and evaluation. Aim: To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region – home care teams, hospital support teams and inpatient palliative care services. Design and setting: Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Results: Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005–2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Conclusion: Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population. [ABSTRACT FROM AUTHOR]

Background: Chronic breathlessness adversely impacts people with chronic obstructive pulmonary disease and their caregivers (family and friends), who may, in turn, experience significant burden due to their caregiving role. Sustained-release morphine may reduce chronic breathlessness in some patients, which may have an impact on caregivers' perceived burden. Aim: To explore the impact on caregiver burden of active treatment of people with chronic breathlessness (modified Medical Research Council (mMRC) ⩾ 3) and chronic obstructive pulmonary disease (COPD) with regular, low-dose, sustained-release morphine within a multi-site, double-blind, randomised, placebo-controlled trial. Design: Exploratory analysis of self-reported caregiver burden at baseline and end of week 3 in a randomised, double-blind, placebo-controlled study. Caregiver measures included: demographics and perceived burden (Zarit Burden Interview 12-item short-form questionnaire). Patient measures included: worst breathlessness and FitBitR-measures. Setting/participants: All consenting caregivers of trial patient participants in a multi-site study recruiting from palliative care and respiratory services. Results: Caregivers (n = 49; 59% women; median age 68 years [IQR 50–75]) reported median baseline caregiver burden 12 [IQR 5–17], with 53% reporting high burden (⩾13). Eighty-four percent of caregivers reported no change in burden. In people whose worst breathlessness improved, caregiver burden moved in the same direction, though the correlation was not significant (rs = 0.25, p = 0.17). Conversely, caregiver burden worsened as patients' minutes lightly active increased, with the correlation being significant (rs = 0.56, p = 0.04). Conclusions: Caregivers reported high levels of caregiver burden, but patients' response to treatment in terms of their symptom and function may influence change in caregiver burden over a three-week period. [ABSTRACT FROM AUTHOR]

Background: The global need for focused improvements in palliative care within the acute hospital setting is well noted. A large volume of evidence exists detailing what hospitalised patients with palliative care needs and their families note as important for high quality care. Patient Reported Experience Measures (PREMs) are one mechanism that hospitals could use to inform improvement work. To date there has not been a review of PREMs available for hospitalised patients with palliative care needs and/or their family, nor how they align with noted priorities for high quality care. Aim: To identify and describe PREMs designed for hospitalised patients with palliative care needs and their families; and their alignment with patient and family identified domains for high quality care. Design: A systematic review. Data sources: A systematic search of CINAHL, Medline and PsycInfo was conducted up to September 23, 2022 and supplemented by handsearching article reference lists and internet searches. PREMs written in English and designed for patients with palliative care needs in acute hospitals were eligible for inclusion. Included PREMs were described by: summarising key characteristics; and mapping their items to domains noted to be important to hospitalised patients with palliative care needs and their families informed by outcomes from a published study completed in 2021. Evidence for psychometric properties were reviewed. Results: Forty-four PREMs with 827 items were included. Items per PREM varied from 2 to 85 (median 25, IQR 13–42). Two-thirds (n = 534, 65%) of the items were designed for families and a third (n = 283, 34%) for hospitalised patients, and very few (n = 10, 1%) for both. Sixty-six percent of items measured person-centred care, 30% expert care and 4% environmental aspects of care. Available PREMs address between 1 and 11 of the 14 domains of importance for quality palliative care. PREMs had a median of 38% (IQR 25.4–56.3) of items >Grade 8 measured by the Flesch-Kincaid readability test, with Grade 8 or lower recommended to ensure health information is as accessible as possible across the population. Conclusions: Whilst 44 PREMs are available for hospitalised patients with palliative care needs or their families, a varied number of items are available for some domains of care provision that are important, compared to others. Few are suitable for people with lower levels of literacy or limited cognitive capacity due to illness. [ABSTRACT FROM AUTHOR]

Background: COPD causes high morbidity and mortality, emphasizing the need for palliative care. Aim: To assess the effectiveness of palliative care in patients with COPD. Design: Cluster randomized controlled trial (COMPASSION study; Netherlands Trial Register (NTR): NL7644, 07-04-2019). Healthcare providers within the intervention group were trained to implement palliative care components into routine COPD care. Patients completed questionnaires at baseline, after 3 and 6 months; medical records were assessed after 12 months. The primary outcome was quality of life (FACIT-Pal). Secondary outcomes were anxiety, depression, spiritual well-being, satisfaction with care, acute healthcare use, documentation of life-sustaining treatment preferences and place of death. Generalized linear mixed modelling was used for analyses. Setting: Eight hospital regions in the Netherlands. Participants: Patients hospitalized for an acute exacerbation of COPD and positive ProPal-COPD score. Results: Of 222 patients included, 106 responded to the questionnaire at 6 months. Thirty-six of 98 intervention patients (36.7%) received the intervention. Intention-to-treat-analysis showed no effect on the primary outcome (adjusted difference: 1.09; 95% confidence interval: −5.44 to 7.60). In the intervention group, fewer intensive care admissions for COPD took place (adjusted odds ratio: 0.21; 95% confidence interval: 0.03–0.81) and strong indications were found for fewer hospitalizations (adjusted incidence rate ratio: 0.69; 95% confidence interval: 0.46–1.03). Conclusions: We found no evidence that palliative care improves quality of life in patients with COPD. However, it can potentially reduce acute healthcare use. The consequences of the COVID-19 pandemic led to suboptimal implementation and insufficient power, and may have affected some of our findings. [ABSTRACT FROM AUTHOR]

Background: Knowledge about the process and the results of the implementation of clinical guidelines to improve palliative care is limited. A national project aimed at improving the quality of life of advanced cancer patients admitted to specialized palliative care services in Denmark by implementing clinical guidelines for the treatment of pain, dyspnea, constipation, and depression. Aim: To investigate the degree of clinical guideline implementation by evaluating the proportion of patients treated according to guidelines among those who qualified (i.e. reported severe symptom level) before and after the 44 palliative care services implemented the guidelines, and how often different types of interventions were provided. Design: This is a national register-based study. Setting/participants: Data from the improvement project were stored in and later obtained from the Danish Palliative Care Database. Adult patients with advanced cancer admitted to palliative care between September 2017 and June 2019 who answered the EORTC QLQ-C15-PAL questionnaire were included. Results: In total 11,330 patients answered the EORTC QLQ-C15-PAL. The proportions of services that implemented the four guidelines ranged 73%–93%. Among services that had implemented guidelines, the proportion of patients receiving interventions was roughly constant over time reaching between 54% and 86% (lowest for depression). Pain and constipation were frequently treated pharmacologically (66%–72%), whereas dyspnea and depression were frequently treated non-pharmacologically (61% each). Conclusions: Implementing clinical guidelines was more successful for physical symptoms than for depression. The project generated national data on interventions provided when guidelines were followed, which may be used to understand differences in care and outcomes. [ABSTRACT FROM AUTHOR]

Background: Palliative medicine physicians may be at higher risk of burnout due to increased stressors and compromised resilience during the COVID-19 pandemic. Burnout prevalence and factors influencing this among UK and Irish palliative medicine physicians is unknown. Aim: To determine the prevalence of burnout and the degree of resilience among UK and Irish palliative medicine physicians during the COVID-19 pandemic, and associated factors. Design: Online survey using validated assessment scales assessed burnout and resilience: The Maslach Burnout Inventory Human Services Survey for Medical Personnel [MBI-HSS (MP)] and the Connor-Davidson Resilience Scale (CD-RISC). Additional tools assessed depressive symptoms, alcohol use, and quality of life. Setting/participants: Association of Palliative Medicine of UK and Ireland members actively practising in hospital, hospice or community settings. Results: There were 544 respondents from the 815 eligible participants (66.8%), 462 provided complete MBI-HSS (MP) data and were analysed. Of those 181/462 (39.2%) met burnout criteria, based on high emotional exhaustion or depersonalisation subscales of the MBI-HSS (MP). A reduced odds of burnout was observed among physicians who worked ⩽20 h/week (vs 31–40 h/week, adjusted odds ratio (aOR) 0.03, 95% confidence interval (CI) 0.002–0.56) and who had a greater perceived level of clinical support (aOR 0.70, 95% CI 0.62–0.80). Physicians with higher levels of depressive symptoms had higher odds of burnout (aOR 18.32, 95% CI 6.75–49.73). Resilience, mean (SD) CD-RISC score, was lower in physicians who met burnout criteria compared to those who did not (62.6 (11.1) vs 70.0 (11.3); p < 0.001). Conclusions: Over one-third of palliative medicine physicians meet burnout criteria. The provision of enhanced organisational and colleague support is paramount in both the current and future pandemics. [ABSTRACT FROM AUTHOR]

Background: Good care of the dying has been defined as being able to die in the place of your choice, free from pain, cared for with dignity and supported by the best possible care. This definition underpinned the development of the ‘10/40 Model’ of care for the dying, in 2013. The model includes 10 ‘Key Principles’ that underpin 40 ‘Core Outcomes’ of care. It was necessary to update consensus on the 10/40 Model to ensure that it remains clinically relevant and applicable for practice. Aim: Update international consensus on the content of the 10/40 Model. Design: Delphi study utilising questionnaire completion; each round informed the need for, and content of the next. Free text comments were also sought. Three rounds of Delphi were undertaken. Setting/participants: A total of 160 participants took part in round 1, representing 31 countries; 103 in round 2 and 57 in round 3. Participants included doctors, nurses, researchers and allied health professionals, with over 80% working predominantly in palliative care (general/specialist not specified). Results: Minor amendments were made to seven items related to: recognition of the dying phase, ongoing assessment of the patient’s condition, communication with patients about the plan of care and care in the immediate time after the death of a patient. Results supported the addition of a sub core outcome for care provided after death. Conclusion: The updated 10/40 Model will guide the delivery of high-quality care for dying patients regardless of the location of care. Further work should focus on increasing lay participation and participation from low income and culturally diverse countries. [ABSTRACT FROM AUTHOR]

Background: Acceptance and Commitment Therapy is a form of Cognitive Behavioural Therapy which uses behavioural psychology, values, acceptance and mindfulness techniques to improve mental health and wellbeing. Acceptance and Commitment Therapy is efficacious in treating stress, anxiety and depression in a broad range of settings including occupational contexts where emotional labour is high. This approach could help palliative care staff to manage work-related stress and promote wellbeing. Aim: To develop, and feasibility test, an online Acceptance and Commitment Therapy intervention to improve wellbeing of palliative care staff. Design: A single-arm feasibility trial of an 8-week Acceptance and Commitment Therapy based intervention for staff, consisting of three online facilitated group workshops and five online individual self-directed learning modules. Data was collected via online questionnaire at four time-points and online focus groups at follow-up. Setting/participants: Participants were recruited from Marie Curie hospice and nursing services in Scotland. Results: Twenty five staff commenced and 23 completed the intervention (93%). Fifteen participated in focus groups. Twelve (48%) completed questionnaires at follow-up. Participants found the intervention enjoyable, informative and beneficial. There was preliminary evidence for improvements in psychological flexibility (Cohen's d = 0.7) and mental wellbeing (Cohen's d = 0.49) between baseline and follow-up, but minimal change in perceived stress, burnout or compassion satisfaction. Conclusion: Online Acceptance and Commitment Therapy for wellbeing is acceptable to palliative care staff and feasible to implement using Microsoft Teams in a palliative care setting. Incorporating ways to promote long-term maintenance of behaviour changes, and strategies to optimise data collection at follow-up are key considerations for future intervention refinement and evaluation. [ABSTRACT FROM AUTHOR]

Background: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. Aim: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. Design: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. Setting/participants: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. Results: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. Conclusion: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic. [ABSTRACT FROM AUTHOR]

Background: Patients receiving palliative care value attention given to their spiritual needs. However, these needs often remain unexplored as healthcare professionals lack the skills to identify and explore them and to integrate this information into care plans. Aim: To evaluate the effects of an interactive communication training intervention for palliative care teams in order to identify and explore the spiritual dimension and integrate it in patients' care plans. Design: A mixed methods pre-post study, including self-assessment questionnaires, evaluation of videos with simulated consultations (applied competence) and medical record review (implementation). Setting/participants: Three palliative care teams including nurses (N = 21), physicians (N = 14) and spiritual caregivers (N = 3). Results: The questionnaires showed an improvement on 'Patient and family-centred communication' of the End-of-life professional caregiver survey (+0.37, p < 0.01; the 8-item S-EOLC (+0.54, p < 0.01) and regarding the Spiritual Care Competence Scale, on the three subscales used (+0.27, p < 0.01, +0.29, p < 0.01 and +0.32, p < 0.01). Video evaluations showed increased attention being paid to patient's aims and needs. The medical record review showed an increase in anticipation on the non-somatic dimension (OR: 2.2, 95% CI: 1.2–4.3, p < 0.05) and, using the Mount Vernon Cancer Network assessment tool, addressing spiritual issues (OR: 10.9, 95% CI: 3.7–39.5, p < 0.001). Conclusions: Our training intervention resulted in increased palliative care professionals' competence in identifying and exploring patients' spiritual issues, and their integration in multidimensional proactive palliative care plans. The intervention directly addresses patients' spiritual concerns and adds value to their palliative care plans. [ABSTRACT FROM AUTHOR]

Background: Mature evidence exists supporting the integration of palliative care in cancer care, but translation of evidence into practice is less well understood. Aim: We sought to understand current access to palliative care and its timing for people with cancer and to compare practices over time. Design: We conducted a retrospective population cohort study using routinely collected administrative health data sets in Victoria, Australia. Setting/Participants: All adult cancer decedents in 2018 were identified and clinical, demographic, palliative care access and quality of end of life care indices collected. Comparisons between a historic cohort of lung, breast and prostate cancer patients who died between the years 2005 and 2009 and those with these diagnoses in the current cohort. Results: In 2018 there were 10,245 Victorian decedents with a cancer-coded cause of death, of these 3689 had lung, prostate or breast cancer. In 2018, access to palliative care increased (66% vs 54%) and greater numbers accessed palliative care more than 3 months before death (18% vs 10%) than in 2005–2009. Indices of end of life quality improved across most domains. However the median time between first palliative care and death was shorter in 2018 (22 vs 25 days) and more people first accessed palliative care in the hospitalisation during which they died (43% vs 33%). Conclusion: Despite established benefits of early palliative care, the important task of translation of this evidence into practice remains. [ABSTRACT FROM AUTHOR]

Background: Paramedics face end-of-life care patients during emergency calls and more recently through planned protocols. However, paramedics experiences and educational needs concerning preplanned end-of-life care at home remain largely unknown. Aim: To describe experiences and educational needs of the paramedics included in the end-of-life care protocol. Design: A mixed method study with a questionnaire including open ended questions and numeric evaluations on a Likert scale. Setting/Participants: The questionnaire was delivered to and answered by all the 192 paramedics working in North Karelia fire and rescue department during the time of the data collection in 2017. Results: Over 80% of the paramedics agreed that the protocol helped them to take care of the patients and to improve the quality of end-of-life care. Visits to the patients were considered useful and the end-of-life care as a meaningful work by 76.5% and 62.5% of the paramedics, respectively. The paramedics expressed challenges in psychosocial aspects, communication, symptom management, and their role in end-of-life care. Encountering and communication with the families as well as managing the most common symptoms were emphasized as educational needs. Using a patient controlled analgesia device emerged as an example of practical educational aspect. Conclusions: Paramedics considered end-of-life care at home meaningful but called for more competency in supporting and encountering the families and in symptom management. Our results can be utilized when developing end-of-life care protocols and education for the paramedics. Patients' and families' views on the paramedics' participation in end-of-life care should be evaluated in the future. [ABSTRACT FROM AUTHOR]

Background: The surprise question is widely used to identify patients nearing the last phase of life. Potential differences in accuracy between timeframe, patient subgroups and type of healthcare professionals answering the surprise question have been suggested. Recent studies might give new insights. Aim: To determine the accuracy of the surprise question in predicting death, differentiating by timeframe, patient subgroup and by type of healthcare professional. Design: Systematic review and meta-analysis. Data sources: Electronic databases PubMed, Embase, Cochrane Library, Scopus, Web of Science and CINAHL were searched from inception till 22nd January 2021. Studies were eligible if they used the surprise question prospectively and assessed mortality. Sensitivity, specificity, negative predictive value, positive predictive value and c-statistic were calculated. Results: Fifty-nine studies met the inclusion criteria, including 88.268 assessments. The meta-analysis resulted in an estimated sensitivity of 71.4% (95% CI [66.3–76.4]) and specificity of 74.0% (95% CI [69.3–78.6]). The negative predictive value varied from 98.0% (95% CI [97.7–98.3]) to 88.6% (95% CI [87.1–90.0]) with a mortality rate of 5% and 25% respectively. The positive predictive value varied from 12.6% (95% CI [11.0–14.2]) with a mortality rate of 5% to 47.8% (95% CI [44.2–51.3]) with a mortality rate of 25%. Seven studies provided detailed information on different healthcare professionals answering the surprise question. Conclusion: We found overall reasonable test characteristics for the surprise question. Additionally, this study showed notable differences in performance within patient subgroups. However, we did not find an indication of notable differences between timeframe and healthcare professionals. [ABSTRACT FROM AUTHOR]

Background: Uptake of advance care planning in routine nursing home care is low. Through extensive literature review, theoretical development, and stakeholder involvement, we developed the ACP+ intervention. Aims: To evaluate the effects of ACP+ on the knowledge and self-efficacy (confidence in own skills) of nursing home care staff concerning advance care planning. Design: Cluster randomized controlled trial, conducted between February 2018 and January 2019 (NCT03521206, clinicaltrials.gov). ACP+ is a multicomponent intervention aimed at training and supporting nursing home staff and management in implementing advance care planning in nursing home practice through a train-the-trainer approach over 8 months. Fourteen nursing homes were randomized using a matched-pairing strategy, seven received ACP+, seven followed usual practice. Analyses (intention-to-treat) involved linear mixed models. Setting/participants: Nursing homes in Flanders (Belgium). Results: 694 of 1017 care staff (68% response rate) at baseline and 491 of 989 care staff (50%) post-intervention (8 months) returned questionnaires. Post-intervention, care staff's self-efficacy concerning advance care planning was significantly higher in the intervention than in the control group (baseline-adjusted mean difference 0.57; 95% CI 0.20–0.94; p = 0.003; Cohen's d = 0.30). Advance care planning knowledge (95% CI 0.95–1.15; p = 0.339; ratio: 1.04) did not differ significantly between groups. Conclusions: The ACP+ intervention for nursing homes improved care staff's self-efficacy but not their knowledge concerning advance care planning. Considering the comprehensive and multi-component approach used, these effects were smaller than expected. Reasons for this may be related to the chosen follow-up period, outcomes and measurements, or to the intervention itself and its implementation. [ABSTRACT FROM AUTHOR]

Background: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) (n = 50), Sweden (n = 129) and the UK (n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services' dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities. [ABSTRACT FROM AUTHOR]

Background: Volunteers make a huge contribution to the health and wellbeing of the population and can improve satisfaction with care especially in the hospice setting. However, palliative and end-of-life-care volunteer services in the hospital setting are relatively uncommon. The iLIVE Volunteer Study, one of eight work-packages within the iLIVE Project, was tasked with developing a European Core Curriculum for End-of-Life-Care Volunteers in hospital. Aim: Establish an international consensus on the content of a European Core Curriculum for hospital end-of-life-care volunteer services which support patients in the last weeks of life. Design: Delphi Process comprising the following three stages: 1. Scoping review of literature into palliative care volunteers. 2. Two rounds of Delphi Questionnaire. 3. Nominal Group Meeting. Setting/participants: Sixty-six participants completed the Round 1 Delphi questionnaire; 75% (50/66) took part in Round 2. Seventeen participants attended the Nominal Group Meeting representing an international and multi-professional group including, clinicians, researchers and volunteer coordinators from the participating countries. Results: The scoping review identified 88 items for the Delphi questionnaire. Items encompassed organisational issues for implementation and topics for volunteer training. Three items were combined and one item added in Round 2. Following the Nominal Group Meeting 53/87 items reached consensus. Conclusion: Key items for volunteer training were agreed alongside items for implementation to embed the end-of-life-care volunteer service within the hospital. Recommendations for further research included in-depth assessment of the implementation and experiences of end-of-life-care volunteer services. The developed European Core Curriculum can be adapted to fit local cultural and organisational contexts. [ABSTRACT FROM AUTHOR]

Background: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. Aim: To identify the optimal moment for, and reasons to initiate advance care planning in different illness trajectories. Design and methods: A health records survey study; health records were presented to 83 GPs with request to indicate and substantiate what they considered optimal advance care planning timing within the 2 years before death. We used quantitative and qualitative analyses. Setting and patients: We selected and anonymized 90 health records of patients who died with cancer, organ failure or multimorbidity, from a regional primary care registration database in the Netherlands. Results: The median optimal advance care planning timing according to the GPs was 228 days before death (interquartile range 392). This moment was closer to death for cancer (87.5 days before death, IQR 302) than for organ failure (266 days before death, IQR 401) and multimorbidity (290 days before death, IQR 389) (p < 0.001). The most frequently mentioned reason for cancer was "receiving a diagnosis" (21.5%), for organ failure it was "after a period of illness" (14.7%), and for multimorbidity it was "age" and "patients" expressed wishes or reflections' (both 12.0%). Conclusion: The optimal advance care planning timing and reasons to initiate advance care planning indicated by GPs differ between patients with cancer and other illnesses, and they also differ between GPs. This suggests that "the" optimal timing for ACP should be seen as a "window of opportunity" for the different disease trajectories. [ABSTRACT FROM AUTHOR]

Background: The death of a loved one is considered as one of the most stressful life events. During the COVID-19 pandemic, grief processes are potentially affected by measures such as social distancing and self-quarantine. Aim: The aim of this study was to give insight in the impact of the COVID-19 pandemic on quality of life, social support, and self-care of bereaved relatives of people with advanced cancer in order to evaluate whether care for bereaved relatives during the COVID-19 pandemic should be improved. Design: A cross-sectional analysis using data from bereaved relatives of a prospective, longitudinal, multicenter, observational study on quality of care and quality of life of people with advanced cancer and their (bereaved) relatives (eQuiPe). Setting/participants: Quality of life, social support, and self-care of bereaved relatives who completed a questionnaire within 3–6 months after their relative died during COVID-19 (April-November 2020) were compared with bereaved relatives who completed this questionnaire pre-COVID-19 (April-November 2019). Results: Ninety-one bereaved relatives were included in the analysis, 44 bereaved relatives completed the questionnaire pre-COVID-19 and 47 during COVID-19. The median age of the participants was 65 (IQR = 14) years and 58% were female. There were no significant differences between the pre-COVID-19 and during COVID-19 bereaved relatives in quality of life (68 vs 69), social support (17 vs 18), and self-care (20 vs 19). Conclusions: On the short-term, the COVID-19 pandemic did not have significant impact on bereaved relatives' wellbeing. However, long-term impact of the pandemic on their wellbeing should be assessed. [ABSTRACT FROM AUTHOR]

Background: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. Aim: To explore bereaved relatives' experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. Design: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June–September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Participants: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. Results: Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. Conclusion: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death. [ABSTRACT FROM AUTHOR]

Background: Although a number of quality indicators for palliative care have been implemented worldwide, evidence regarding the performance of palliative care teams is scarce. Aim: Evaluating the quality of palliative care using quality indicators; to describe the variation in quality between palliative care teams; and to suggest quality benchmarks for these teams. Design: A repeated cross-sectional study design to collect quality indicator data by means of a validated quality indicator set in 36 Belgian palliative care teams at home and in hospitals. Risk-adjustment procedures, taking into account patient-mix, were applied to suggest benchmarks. Participants: Between 2014 and 2017, five quality measurements with questionnaires were conducted in 982 patients receiving palliative care, 4701 care providers and 1039 family members of deceased patients. Results: A total of 7622 assessments were received. Large risk-adjusted variations between the different palliative care teams were identified in: regularly updating patient files (IQR: 12%–39%), having multidisciplinary consultations about care objectives (IQR: 51%–73%), discussing end-of-life care decisions with patients (IQR: 26%–71%–92%), relieving shortness of breath (IQR: 57%–78%), regularly assessing pain (IQR: 43%–74%) and symptoms by means of validated scales (IQR: 23%–60%), initiating palliative care at least 2 weeks before death (IQR: 30%–50%), and weekly contact with the GP in the last 3 months of life (IQR 16%–43%). Conclusion: The large risk-adjusted variation found across the quality indicator scores suggest that repeated and standardized quality improvement evaluations can allow teams to benchmark themselves to each other to identify areas of their palliative care delivery that need improvement. [ABSTRACT FROM AUTHOR]

Background: Early integration of palliative care into oncology treatment is widely recommended. Palliative rehabilitation has been suggested as a paradigm which integrates enablement, self-management, and self-care into the holistic model of palliative care. Aim: We hypothesized that early integration of palliative rehabilitation could improve quality of life. Design: The Pal-Rehab study (ClinicalTrials.gov NCT02332317) was a randomized controlled trial. The 12-week intervention offered by a specialized palliative care team was two mandatory consultations and the opportunity of participating in an interdisciplinary group program. Supplementary individual consultations were offered, if needed. Setting/participants: At Vejle University Hospital, Denmark, adults diagnosed with advanced cancer within the last 8 weeks were randomized 1:1 to standard oncology care or standard care plus intervention. Assessments at baseline and after six and 12 weeks were based on the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30). At baseline participants were asked to choose a "primary problem" from a list of QLQ-C30 domains. The primary endpoint was the change in that "primary problem" measured as area under the curve across 12 weeks (T -scores, European mean value = 50, SD = 10). Results: In all, 288 were randomized of whom 279 were included in the modified intention-to-treat analysis (146 in the standard care group and 133 in the intervention group). The between-group difference for the primary outcome was 3.0 (95% CI [0.0–6.0]; p = 0.047) favoring the intervention. Conclusion: Early integration of palliative rehabilitation into standard oncology treatment improved quality of life for newly diagnosed advanced cancer patients. Trial registration: Clinicaltrials.gov Identifier: NCT02332317, registered on December 30, 2014. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question (" Would I be surprised if this patient were to die within the next 12 months?") is widely used to identify palliative patients, though with low predictive value. To improve timely identification of palliative care needs, we propose an additional Surprise Question (" Would I be surprised if this patient is still alive after 12 months?") if the original Surprise Question is answered with "no." The combination of the two questions is called the Double Surprise Question. Aim: To examine the prognostic accuracy of the Double Surprise Question in outpatients with cancer. Design: A prospective study. Participants: Twelve medical oncologists completed the Double Surprise Question for 379 patients. Results: In group 1 (original Surprise Question "yes": surprised if dead) 92.1% (176/191) of the patients were still alive after 1 year, in group 2a (original and additional Surprise Question "no": not surprised if dead and not surprised if alive) 60.0% (63/105), and in group 2b (original Surprise Question "no," additional Surprise Question "yes": surprised if alive) 26.5% (22/83) (p < 0.0001). The positive predictive value increased by using the Double Surprise Question; 74% (61/83) vs 55% (103/188). Anticipatory palliative care provision and Advance Care Planning items were most often documented in group 2b. Conclusions: The Double Surprise Question is a promising tool to more accurately identify outpatients with cancer at risk of dying within 1 year, and therefore, those in need of palliative care. Studies should reveal whether the implementation of the Double Surprise Question leads to more timely palliative care. [ABSTRACT FROM AUTHOR]

Background: The health of caregivers can be affected during end-of-life caregiving. Previous cross-sectional studies have indicated an association between poor health status and prolonged grief disorder, but prospective studies are lacking. Aim: To describe physical and mental health status in caregivers of patients at the end of life, and to investigate whether caregivers' health status during caregiving predict prolonged grief disorder. Design: A population-based prospective survey was conducted. Health status was measured in caregivers during caregiving (SF-36), and prolonged grief disorder was assessed 6 months after bereavement (Prolonged Grief-13). We calculated mean scores of health status and explored the association with prolonged grief disorder using logistic regression adjusted for age, gender and education. Setting/participants: The health in caregivers of patients granted drug reimbursement due to terminal illness in Denmark in 2012 was assessed during caregiving and 6 months after bereavement (n = 2125). Results: The SF-36 subscale 'role-physical' concerning role limitations due to physical health, the 'mental health' component score, and all 'mental health' subscales showed significantly worse health in the participants than in the general population. Both poor physical health (adjusted OR: 1.05 (95% CI: 1.04–1.07)) and poor mental health (adjusted OR: 1.09 (95% CI: 1.07–1.11)) predicted prolonged grief disorder. Conclusion: Caregivers scored lower on one physical subscale and all mental health measures than the general population. Prolonged grief disorder was predicted by poor physical and mental health status before bereavement. Future research is needed on the use of health status in systematic assessment to identify caregivers in need of support. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced cancer commonly report depressive symptoms. Examinations of gender differences in depressive symptoms in patients with advanced cancer have yielded inconsistent findings. Aim: The objective of this study was to investigate whether the severity and correlates of depressive symptoms differ by gender in patients with advanced cancer. Design: Participants completed measures assessing sociodemographic and medical characteristics, disease burden, and psychosocial factors. Depressive symptoms were examined using the Patient Health Questionnaire, and other measures included physical functioning, symptom burden, general anxiety, death related distress, and dimensions of demoralization. A cross-sectional analysis examined the univariate and multivariate relationships between gender and depressive symptoms, while controlling for important covariates in multivariate analyses. Setting/participants: Patients with advanced cancer (N = 305, 40% males and 60% females) were recruited for a psychotherapy trial from outpatient oncology clinics at a comprehensive cancer center in Canada. Results: Severity of depressive symptoms was similar for males (M = 7.09, SD = 4.59) and females (M = 7.66, SD = 5.01), t (303) = 1.01, p = 0.314. Greater general anxiety and number of cancer symptoms were associated with depressive symptoms in both males and females. Feeling like a failure (β = 0.192), less death anxiety (β = –0.188), severity of cancer symptoms (β = 0.166), and older age (β = 0.161) were associated with depressive symptoms only in males, while disheartenment (β = 0.216) and worse physical functioning (β = 0.275), were associated with depressive symptoms only in females. Conclusions: Males and females report similar levels of depressive symptoms but the pathways to depression may differ by gender. These differences suggest the potential for gender-based preventive and therapeutic interventions in this population. [ABSTRACT FROM AUTHOR]

Background: There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care. Aim: To determine (1) the feasibility of integrating 'LIFEView', a video-based software with >1600 videos of world destinations, in palliative care settings, and (2) positive, neutral or harmful effects of using 'LIFEView' videos. Design: A mixed-methods pre–post intervention pilot study was conducted to collect feasibility and preliminary data on physical and psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life. Setting/participants: Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation team who were capable of providing consent and completing the outcome measures were eligible participants. Results: Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using the Edmonton Symptom Assessment System–revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations for using 'LIFEView', perceptions of the technology, reminiscence, 'LIFEView' as an adaptable technology and ongoing or future use. Conclusion: A future adequately powered study to investigate the impacts of 'LIFEView' on patient well-being and quality of life appears to be feasible. [ABSTRACT FROM AUTHOR]

Background: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear. Aim: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT. Design: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim. Setting/participants: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients' notes from each ward who died during admission or within 100 days of discharge. Results: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites. Conclusions: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities. [ABSTRACT FROM AUTHOR]

Background: In many countries, the consumption of opioid medicines is too low to meet population needs. Discussions within the Access To Opioid Medication in Europe project indicated that there may be significant differences in the perception of barriers for their adequate use, depending on the stakeholders. Aim: The aim of this study was to examine the perception of barriers and their impact concerning opioid medicines, comparing policy makers, healthcare professionals working in the field of pain management, palliative care or harm reduction and other stakeholders. Design: Data were collected using a questionnaire partially constructed from existing surveys, reviewed for content validity by four experts and pilot-tested in Latvia. Setting/participants: Participants of the Access to Opioid Medication in Europe national conferences were invited to complete the questionnaire. Stakeholder groups were compared using non-parametric rank-sum tests. Results: In total, 199 participants (54%) in seven countries completed the questionnaire. Most frequently rated major barriers included lack of financial resources and inadequate knowledge, skills and training among policy makers (55%–66%). Overall, policy makers perceived issues less often as major barriers or having major impact (29% barrier, 32% impact) compared to other stakeholders (36%–42% barrier, 39%–51% impact). Significant differences were seen on several aspects. For example, excessive regulation or bureaucracy for prescribing was rated as having major impact by 55%–57% of healthcare professionals in contrast to only 20% of the policy makers (p = 0.002). Conclusion: Multiple barriers may play an important role, partly depending on the perspective of the stakeholder involved. Hence, when addressing perceived barriers, it is important to include all relevant stakeholder groups. Only then, effective and widely supported solutions can be implemented. [ABSTRACT FROM AUTHOR]

Background: Palliative transport is transport home of patients requiring critical care transport support with expectation of imminent death. Many parents prefer their child's death at home; evidence suggests death in the preferred location improves bereavement outcomes. Little is known about the clinical and demographic diversity of patients receiving palliative transport or the perspectives of participating staff. Aim: The objectives of the present study were to (1) characterize demographic and clinical factors involved in palliative transport, (2) identify challenges encountered, and and (3) ascertain staff perspectives. Design: Ten-year retrospective chart review and cross-sectional staff survey using study-specific questionnaire. Setting/participants: Twenty-three patients had palliative transport from a tertiary pediatric hospital from 2004 to 2013, of which 12 met inclusion criteria. Survey responses from 22 participating staff were received. Results: The cohort of 12 patients was 58% female, with a mean (range) age of 5.5 (0.01–22) years; racial composition was not significantly different than the palliative care clinical census over the same time period. Distances under 30 miles accounted for 50% of palliative transports. The majority of patients (75%) died within 2 days of palliative transport. Six unanticipated events are described. Staff reported palliative transport as a positive experience, regarding it as an important job component. However, 63% were dissatisfied or undecided about the plan should the patient die enroute, and 48% experienced some level of dissatisfaction with communication. Conclusion: Palliative transport is a feasible option for some patients. Staff experienced palliative transport as valuable, although process concerns were noted. This study underscores the importance of preparedness, training, and education for palliative transports. [ABSTRACT FROM AUTHOR]

Background: Maintaining quality of life including physical functioning is highly prioritized among older cancer patients. Geriatric assessment is a recommended approach to identify patients with increased vulnerability to stressors (frailty). How frailty affects quality of life and physical functioning in older cancer patients has scarcely been investigated. Aim: Focusing on physical functioning and global quality of life, we investigated whether frailty identified by a geriatric assessment was associated with higher risk of quality-of-life deterioration during cancer treatment and follow-up. Design: Prospective, observational study. Patients were classified as frail or non-frail by a modified geriatric assessment. Quality of life was measured using the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire at inclusion, 2, 4, 6 and 12 months. Setting: Eight Norwegian outpatient cancer clinics. Participants: Patients ⩾70 years with solid tumours referred for palliative or curative systemic medical cancer treatment. Results: Among 288 patients included, 140 (49%) were frail and 148 (51%) non-frail. Frail patients consistently reported poorer scores on all functioning and symptom scales. Independent of age, gender and major cancer-related factors, frail patients had significantly poorer physical functioning and global quality of life during follow-up, and opposed to non-frail patients they had both a clinically and statistically significant decline in physical functioning from baseline until 12 months. Conclusions: Geriatric assessment identifies frail patients with increased risk of physical decline, poor functioning and high symptom burden during and following cancer treatment. Frail patients should therefore receive early supportive or palliative care. [ABSTRACT FROM AUTHOR]

Background: Gathering clinical evidence data on patients’ palliative care needs is paramount to identify changes in outcomes over time and maintaining on-going quality improvement. Implementation of patient-centred outcome measures has been widely recommended. The routine use of these instruments in daily practice is challenging and not widespread. Aim: To implement a patient-centred outcome measure in daily practice and fulfil one quality indicator: improve pain during the 72 h after admission, in at least 75% of patients. Design: An observational prospective study. The Palliative care Outcome Scale was used at admission (T0), third day (T1) and weekly. Setting/participants: Hospital palliative care unit with 17 individual rooms. All patients admitted to the unit were included in the study. Results: Preliminary results (N = 84) revealed inconsistent and missing data (14%). Symptoms were sub-optimally controlled by T1. Processes changed, and only a team member could apply Palliative care Outcome Scale. Doctors were encouraged to grasp the meaning of Palliative care Outcome Scale results for each patient. The post-pilot included 317 patients. No missing data occurred. There was an improvement in most items between T0 and T1: ‘pain’ and ‘other symptoms’ presented statistical significant differences (p < 0.05). Conclusion: Implementing a patient-centred outcome measure in a hospital palliative care service is feasible and improves quality of care. Controlling high pain at T0 improved (>80%) by T1. Results became more consistent and symptom control was improved overall. Patients are evaluated based on holistic domains by an interdisciplinary team and we have added a much needed measure to help guide improvement of the quality of care provided. [ABSTRACT FROM AUTHOR]

Background: In Asian societies including Pakistan, a complex background of illiteracy, different familial dynamics, lack of patient's autonomy, religious beliefs, and financial constraints give new dimensions to code status discussion. Barriers faced by physicians during code status discussion in these societies are largely unknown. Aim: To determine the barriers and perceptions in discussion of code status by physicians. Design: Questionnaire-based cross-sectional study. Setting and participants: This study was conducted in the Department of Medicine of The Aga Khan University Hospital, Karachi, Pakistan. A total of 134 physicians who had discussed at least five code statuses in their lifetime were included. Results: A total of 77 (57.4%) physicians responded. Family-related barriers were found to be the most common barriers. They include family denial (74.0%), level of education of family (66.2%), and conflict between individual family members (66.2%). Regarding personal barriers, lack of knowledge regarding prognosis (44.1%), personal discomfort in discussing death (29.8%), and fear of legal consequences (28.5%) were the top most barriers. In hospital-related barriers, time constraint (57.1%), lack of hospital administration support (48.0%), and suboptimal nursing care after do not resuscitate (48.0%) were the most frequent. There were significant differences among opinions of trainees when compared to those of attending physicians. Conclusion: Family-related barriers are the most frequent roadblocks in the end-of-life care discussions for physicians in Pakistan. Strengthening communication skills of physicians and family education are the potential strategies to improve end-of-life care. Large multi-center studies are needed to better understand the barriers of code status discussion in developing countries. [ABSTRACT FROM AUTHOR]

Aims: To establish preliminary evidence for the feasibility, acceptability, and utility of an abbreviated version of Meaning-Centered Psychotherapy tailored to the needs of palliative care patients in the final weeks or months of life. Background: Surprisingly, few mental health interventions have specifically targeted the psychological needs of palliative care patients, when physical comfort seems to take precedence over mental health and emotional needs. Yet the need for mental health services targeting these patients is clear, as one in three palliative care patients experience clinically significant depression and an equal proportion experience clinically significant anxiety. Design: This pilot study used an open-label design to assess the feasibility, acceptability, and perceived utility of Meaning-Centered Psychotherapy-palliative care, a brief intervention that focuses on enhancing meaning at the end of life. Setting/participants: A total of 12 patients admitted to a palliative care hospital for supportive care consented to participate in the study. Results: Of the 11 patients that began treatment (one patient died before the first session), 8 completed the three-session intervention. Patients expressed positive feedback about the structure, focus, and length of the intervention, but varied in precisely which elements they found most helpful. Conclusion: An abbreviated version of Meaning-Centered Psychotherapy tailored to the needs of palliative care patients (Meaning-Centered Psychotherapy-palliative care) appears to be feasible, acceptable, and has the potential to help patients better cope with the challenges inherent in confronting death and dying. Further research, with larger and more representative samples, is needed in order to clarify the strengths and weaknesses of this approach. [ABSTRACT FROM AUTHOR]

Background: Making palliative care accessible to all citizens who are in need of this type of care requires effective policies and education. Moreover, healthcare professionals have an ethical and legal responsibility to ensure quality palliative care. Nevertheless, palliative care has had traditionally a limited emphasis in healthcare professionals’ undergraduate education. Aim: To study the current status of palliative care education in nursing undergraduate curricula and compare 2005 and 2015 findings. Design: An online survey was sent to all state schools providing nursing undergraduate education in Portugal (N = 21). The survey assessed if and how palliative care was included in the curricula, and whether or not national and international recommendations for palliative care nursing education were followed. Further analysis included the content of available curricula/syllabi. Setting/participants: A total of 19 schools completed the survey (90% of response rate). These institutions are geographically dispersed and representative of state nursing educational institutions in Portugal. Results: In 2015, all participant schools integrated palliative care in their curricula; nine schools had palliative care as an independent curricular unit (an 800% increase compared to 2005). While in 2005, only 14 out of 23 (61%) schools included palliative care explicitly in their curricula; in 2015, all 19 participant schools did so. National and international recommendations were followed. Conclusion: The inclusion of palliative care within nursing undergraduate curricula strongly increased from 2005 to 2015. Further research is needed to understand the contribution of education in the access, care provision, quality and development of palliative care in this country. [ABSTRACT FROM AUTHOR]

Background: Palliative care is rooted in the care for incurably ill cancer patients. Yet today there is a recognised need for palliative care for patients with non-cancer conditions. However, the often unpredictable illness trajectories and the difficulty in predicting the imminence of death in people with non-cancer conditions may hamper the provision of high-quality palliative care. Aim: To compare the quality of palliative care provided to patients with cancer, patients with organ failure and frail patients and their relatives. Design: An existing dataset was analysed, consisting of data collected through the Consumer Quality Index Palliative Care questionnaire for bereaved relatives. Setting/participants: Data were analysed of 456 relatives of deceased patients with cancer, patients with organ failure and frail patients from various care settings in the Netherlands. Results: Relatives (e.g. partners or children) of deceased patients with organ failure (n = 61) were more likely to have negative experiences regarding the expertise of healthcare professionals compared with relatives of patients with cancer (n = 215). Relatives of frail patients (n = 180) gave a relatively low rating of the general quality of the care in the last week of the patient’s life, both as regards the care provided to patients (p = 0.015) and as regards the support to relatives (p = 0.009). Conclusion: Compared with the bereaved relatives of patients with cancer, bereaved relatives of patients with organ failure or frailty were more likely to negatively assess the palliative care provided to both the patient and themselves. Improving professionals’ expertise in palliative care for people with non-cancer conditions is recommended. [ABSTRACT FROM AUTHOR]

Background: We developed a new single point of access to integrated palliative care, respiratory medicine and physiotherapy: the breathlessness support service for patients with advanced disease and refractory breathlessness. This study aimed to describe patients’ experiences of the service and identify the aspects valued. Design: We attempted to survey all patients who had attended and completed the 6-week breathlessness support service intervention by sending them a postal questionnaire to self-complete covering experience, composition, effectiveness of the BSS and about participation in research. Data were analysed using descriptive statistics and thematic analysis of free text comments. Results: Of the 70 postal questionnaires sent out, 25 (36%) returned. A total of 21 (84% (95% confidence interval: 69%–98%)) responding patients reported that they definitely found the breathlessness support service helpful and 13 (52% (95% confidence interval: 32%–72%)) rated the breathlessness support service as excellent. A total of 21 (84% (95% confidence interval: 69%–98%)) patients reported that the breathlessness support service helped with their management of their breathlessness along with additional symptoms and activities (e.g. mood and mobility). Four key themes were identified: (1) personalised care, (2) caring nature of the staff, (3) importance of patient education to empower patients and (4) effectiveness of context-specific breathlessness interventions. These were specific aspects that patients valued. Conclusion: Patients’ satisfaction with the breathlessness support service was high, and identified as important to this was a combination of personalised care, nature of staff, education and empowerment, and use of specific interventions. These components would be important in any future breathlessness service. [ABSTRACT FROM AUTHOR]

Background: To effectively care for people who are terminally ill, including those without decision-making capacity, palliative care physicians must know and understand the legal standing of Advance Care Planning in their jurisdiction of practice. This includes the use of advance directives/living wills and substitute decision-makers who can legally consent to or refuse treatment if there is no valid advance directive. Aim: This study aimed to investigate the knowledge, attitudes and practices of medical specialists most often involved in end-of-life care in relation to the law on withholding/withdrawing life-sustaining treatment from adults without decision-making capacity. Design/participants: A pre-piloted survey was posted to specialists in palliative, emergency, geriatric, renal and respiratory medicine; intensive care; and medical oncology in three Australian States. Surveys were analysed using SPSS 20 and SAS 9.3. Results: The overall response rate was 32% (867/2702) – 52% from palliative care specialists. Palliative care specialists and geriatricians had significantly more positive attitudes towards the law ( χ 42 2 = 94 . 352 ; p < 0.001) and higher levels of knowledge about the withholding/withdrawing life-sustaining treatment law ( χ 7 2 = 30 . 033 ; p < 0.001) than did the other specialists, while still having critical gaps in their knowledge. Conclusion: A high level of knowledge of the law is essential to ensure that patients’ wishes and decisions, expressed through Advance Care Planning, are respected to the maximum extent possible within the law, thereby according with the principles and philosophy of palliative care. It is also essential to protect health professionals from legal action resulting from unauthorised provision or cessation of treatment. [ABSTRACT FROM AUTHOR]

Background: Vicarious exposure to trauma is ubiquitous in palliative medicine. Repeated exposure to trauma may contribute to compassion fatigue and posttraumatic stress disorder symptoms in medical and supportive care professionals such as physicians, nurses, and social workers. These symptoms may be intensified among medical and supportive care professionals who use avoidant or rigid coping strategies. Aim: This study aimed to provide an estimate of posttraumatic stress disorder symptoms in a sample of professionals who work in palliative care settings, and have already been enrolled in mindfulness-based communication training. Design: Palliative care providers provided self-reported ratings of posttraumatic stress disorder symptoms, depression, and coping strategies using validated measures including the Acceptance and Action Questionnaire, Cognitive Fusion Questionnaire, and the Posttraumatic Stress Disorder Checklist–Civilian Version. Setting/participants: A total of 21 professionals working with palliative care patients completed assessments prior to beginning mindfulness-based communication training. Results: Posttraumatic stress disorder symptoms were prevalent in this sample of professionals; 42% indicated positive screens for significant posttraumatic stress disorder symptoms, and 33% indicated probable posttraumatic stress disorder diagnosis. Conclusion: Posttraumatic stress disorder symptoms may be common among professionals working in palliative medicine. Professionals prone to avoidant coping and those with more rigid negative thought processes may be at higher risk for posttraumatic stress disorder symptoms. [ABSTRACT FROM AUTHOR]

Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients’ symptom distress and well-being during the last days of life, in residential care homes. Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient’s death, using the Edmonton Symptom Assessment System and Views of Informal Carers – Evaluation of Services. Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden. Results: Shortness of breath (estimate = −2.46; 95% confidence interval = −4.43 to −0.49) and nausea (estimate = −1.83; 95% confidence interval = −3.12 to −0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers – Evaluation of Services item (estimate = −0.47; 95% confidence interval = −0.85 to −0.08). Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings. [ABSTRACT FROM AUTHOR]

Background: Systematic assessment of family caregivers’ support needs and integrating these into service planning according to evidence-based research are vital to improving caregivers’ outcomes and their capacity to provide care at end of life. Aim: To describe the experience with and feedback of nurses on implementing a systematic assessment of support needs with family caregivers in home-based palliative care, using the Carer Support Needs Assessment Tool. Methods: This study was conducted during 2012–2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. Forty-four nurses who trialled the intervention with 233 family caregivers gave their feedback via surveys with closed- and open-ended questions (70.5% response rate). Analyses of quantitative and qualitative data were undertaken. Results: The feedback of nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice both from the family caregiver and service provider perspectives. Using the Carer Support Needs Assessment Tool was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and as identifying needs and service responses that would not otherwise have been undertaken in a timely manner. Conclusion: Our study has successfully addressed the call for alternatives to the professional assessment paradigm using the Carer Support Needs Assessment Tool approach as a caregiver-led intervention facilitated by health professionals. Integrating the Carer Support Needs Assessment Tool in existing practice is fundamental to achieving better caregiver outcomes. [ABSTRACT FROM AUTHOR]

The article presents a study concerning pharmacologic therapeutic futility during the palliative care transition of a cancer patient. The study found that the absence of clinical indication, incorrect dosage or posology and clinically significant drug-disease or comorbidity interactions are the main causes of pharmacologic therapeutic futility. Details on the results, design and methods of the study are given.

The article discusses a study conducted to describe perspectives of family members about care provided to patients who were aged 80 years or over in Intensive Care Units (ICUs) across Canada. Topics discussed include study procedure, statistical analysis of the study and results of the study, which reveal incongruity between family values and preferences for end-of-life care and actual care received for very elderly patients.

The article presents a study conducted to assess end-of-life care and communication from the perspective of intensive care unit staff. It also discusses psychological symptoms of relatives of patients receiving end-of-life care in the intensive care unit. Topics discussed include details of the study and its results, which reveal that communication need be improved within the intensive care unit caregiver team to strengthen the involvement of nurses in end-of-life care.

The article cites a study which attempts to validate a modified CARING tool (termed PREDICT) by using a population of patients presenting to Great Britain Emergency Department. It mentions that CARING is a screening tool developed to identify patients who have a high likelihood of death in one year. It is concluded that PREDICT was successfully applied to the Australian healthcare system with findings similar to the original CARING study conducted in the U.S.

The article presents information on the effect of using high facilitation while implementing the Gold Standards Framework in Care Homes programme in Great Britain. It was hypothesised that implementing the programme will help in reducing hospital deaths for residents. It is concluded that without national guidelines, facilitation of the programme will vary and its implementation.