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Background: The provision of high-quality palliative care is important to nursing practice. However, caring for palliative care patients and their families is challenging within a complex everchanging health environment. Nonetheless the caring, artistic role of the nurse is fundamental to the care of the patient and family. However, this role is currently being overshadowed by the technical and scientific elements of nursing. Methods: A scoping review was conducted utilising Arksey and O'Malley's framework to identify the role and contribution of nurses in caring for patients with palliative care needs. An open time period search of eight electronic databases (MEDLINE, CINAHL, Academic Search Complete, PsycINFO, EMBASE, Web of Science, Scopus and Cochrane Library) was conducted on the 8th of March 2023 and updated on the 30th of April 2024. Screening was performed independently by two reviewers against eligibility criteria with meetings between authors to discuss included papers and form a consensus. Data was extracted relating to palliative care nursing, methodology, key findings, and recommendations. The analysed and summarised data was mapped onto Oldland et al seven domains framework: (a) medical/nursing and technical competence, (b) person centred care, (c) positive interpersonal behaviours, (d) clinical leadership and governance, (e) promotion of safety, (f) management of the environment, and (g) evidence-based practice. Results: Fifty-five papers met the criteria for this review which describes the role and contribution of nurses in caring for palliative patients across all domains of professional practice. The review found the leading areas of nurse contribution were person centred, interpersonal and nursing care aspects, with leadership, managing the environment, patient safety and evidence-based practice evident but scoring lower. The contribution of the nurse in palliative care supports a biopsychosocial-educational approach to addressing the physical, emotional and social needs of patients with palliative care needs and their families across the care continuum. Conclusion: Nurses in palliative care engage in a wide range of roles and responsibilities in caring for patients and their families with palliative care needs. However, there remains minimal evidence on the assessment, intervention, and evaluation strategies used by nurses to highlight the importance of their role in caring for patients and their families in this area. The findings of this review suggest that the artistic element of nursing care is being diluted and further research with a focus on evidencing the professional competence and artistic role of the nurse in the provision of palliative care is required. In addition, research is recommended that will highlight the impact of this care on patient and family care outcomes and experiences. [ABSTRACT FROM AUTHOR]

Background: The World Health Organisation and palliative care stakeholders recommend that healthcare workers are educated in palliative care. Provision of high-quality palliative care is fundamental to nursing practice. However, caring for palliative care patients and meeting family needs is challenging without appropriate knowledge and experience. Palliative care education and clinical skill development for undergraduate student nurses is a priority to ensure graduate nurses are equipped with the knowledge and skill to deliver safe and competent care. Methods: A scoping review guided by Arksey and O'Malley's framework was used to identify undergraduate student nurses' palliative care education and preparation. A comprehensive literature search of five electronic databases and grey literature were conducted from January 2002 to December 2021. The aim was to review the empirical evidence and ascertain how undergraduate student nurses' palliative care education is organised, facilitated, delivered and evaluated. Screening was performed independently by two reviewers against eligibility criteria with meetings to discuss included papers and form a consensus. Data was extracted and related to palliative care undergraduate student nurses' education, educational model, methodology, key findings, and recommendations. Analysed and summarised data was mapped onto the four key review questions (educational models utilised, methods used to assess effectiveness, facilitators/barriers and gaps in the literature). Results: 34 papers met the criteria for this review. The review highlights that undergraduate nursing palliative care education is more evident in high income countries. Limited and diverse published research existing in low- and middle-income countries. Educational models utilised were theoretical and experiential learning and educational process, early integration and multiple learning methods which were highlighted as facilitating factors. However, crowded curricula, lack of palliative care clinical placement expertise, difficulty providing clinical placement, timing and delivery of palliative care and difficulty responding to simulated environments (manikins) were perceived barriers. Nevertheless, palliative care education can increase knowledge, positive attitude, self-confidence and adequate preparation of undergraduate student nurses. Conclusion: This review highlights that there is limited research regarding the timing and delivery of palliative care principles and practice in undergraduate student nurse education. Early integration of palliative care education impacts upon students perceived preparedness for practice and positively influences their attitudes to palliative care provision. [ABSTRACT FROM AUTHOR]

Introduction: The Swedish Register of Palliative Care (SRPC) is a national quality register that collects data about end-of-life care from healthcare providers that care for dying patients. Data are used for quality control and research. Data are mainly collected with an end-of-life questionnaire (ELQ), which is completed by healthcare staff after the death of a patient. A previous validity assessment of the ELQ showed insufficient validity in some items including symptom relief. The aim of this study was to examine the validity of the revised ELQ. Materials and methods: Data from 100 consecutive patients’ medical records at two specialised palliative care units were used to complete new ELQs, which were then compared to the ELQ registrations from the SRPC for the same patients. The level of agreement was calculated for each ELQ item. To account for the possibility of the agreement occurring by chance, Cohen’s kappa was calculated for suitable items. To examine the extent of registration mistakes when transferring the paper form to the web, the original paper versions of the ELQ filled out at the units were compared to data from the ELQs reported to the SRPC. Results: Level of agreement between ELQ registrations from the SRPC and the new ELQs based on the medical records varied between 0.55 and 1.00, where 24 items showed level of agreement above 0.80 and 9 items showed level of agreement below 0.80. Cohen’s kappa with 95% confidence intervals was calculated for 24 items. The kappa values showed that two items had poor agreement, four fair agreement, 11 moderate agreement, five good agreement and two very good agreement. The level of agreement varied between 0.93 and 1.00 when comparing the ELQ registrations in the SRPC and the paper forms. Conclusion: The revised ELQ contains more items with high levels of agreement between registrations in the SRPC and notes in the patients’ medical records when compared to the previous version. Validating issues around symptom assessment remains a challenge in our model of quality assessment. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is influenced by several factors (e.g., patient's readiness to engage, clinician's skills, and the cultural environment). Availability of reliable and valid self-reported measures of the ACP domains is crucial, including cross-cultural equivalence. Aim: To culturally adapt into Italian the 19-item Quality of Communication (QOC) and the 4-item ACP Engagement (4-item ACP-E) questionnaires. Methods: We translated and culturally adapted the two questionnaires and produced a significant other (SO) version of the QOC (QOC-SO). Each questionnaire was field tested via cognitive interviews with users: nine patients (QOC, 4-item ACP-E) and three SOs (QOC-SO) enrolled at three palliative care services. Results: We made minor changes to 5/19 QOC items, to improve clarity and internal consistency; we changed the response option 'didn't do' into 'not applicable'. Finally, we slightly revised the QOC to adapt it to the paper/electronic format. QOC debriefing revealed that the section on end of life was emotionally challenging for both patients and SOs. We simplified the 4-item ACP-E layout, added a sentence in the introduction, and revised the wording of one item, to improve coherence with the Italian ACP legislation. ACP-E debriefing did not reveal any major issue. Conclusions: Results were satisfactory in terms of semantic, conceptual and normative equivalence of both questionnaires. Acceptability was satisfactory for the 4-item ACP-E, while findings of the QOC cognitive debriefing informed a major amendment of a pilot trial protocol on ACP in multiple sclerosis (ConCure-SM): use of the interviewer version only, in an adaptive form. Psychometric testing of both questionnaires on a large, independent sample will follow. [ABSTRACT FROM AUTHOR]

Background: Community-based out-of-hours services are an integral component of end-of-life care. However, there is little understanding of how patients and families utilise these services. This additional analysis of a systematic review aims to understand and identify patterns of out-of-hours service use and produce recommendations for future service design. Method: Data on service use was extracted and secondary analysis undertaken, from a systematic review of models of community out-of-hours services. Narrative synthesis was completed, addressing four specific aspects of service use: 1.Times when patients/families/healthcare professionals need to contact out-of-hours services; 2. Who contacts out-of-hours services; 3. Whether a telephone call, centre visit or home visit is provided; 4. Who responds to out-of-hours calls. Results: Community-based out-of-hours palliative care services were most often accessed between 5pm and midnight, especially on weekdays (with reports of 69% of all calls being made out-of-hours). Family members and carers were the most frequent callers to of the services (making between 60% and 80% of all calls). The type of contact (telephone, centre visit or home visit) varied based on what was offered and on patient need. Over half of services were led by a single discipline (nurse). Conclusions: Out-of-hours services are highly used up to midnight, and particularly by patients' family and carers. Recommendations to commissioners and service providers are to: • Increase provision of out-of-hours services between 5pm and midnight to reflect the increased use at these times. • Ensure that family and carers are provided with clear contact details for out-of-hours support. • Ensure patient records can be easily accessed by health professionals responding to calls, making the triage process easier. • Listen to patients, family and carers in the design of out-of-hours services, including telephone services. • Collect data systematically on out-of-hours-service use and on outcomes for patients who use the service. [ABSTRACT FROM AUTHOR]

Background: Prognostic accuracy in palliative care is valued by patients, carers, and healthcare professionals. Previous reviews suggest clinicians are inaccurate at survival estimates, but have only reported the accuracy of estimates on patients with a cancer diagnosis. Objectives: To examine the accuracy of clinicians’ estimates of survival and to determine if any clinical profession is better at doing so than another. Data Sources: MEDLINE, Embase, CINAHL, and the Cochrane Database of Systematic Reviews and Trials. All databases were searched from the start of the database up to June 2015. Reference lists of eligible articles were also checked. Eligibility Criteria: Inclusion criteria: patients over 18, palliative population and setting, quantifiable estimate based on real patients, full publication written in English. Exclusion criteria: if the estimate was following an intervention, such as surgery, or the patient was artificially ventilated or in intensive care. Study Appraisal and Synthesis Methods: A quality assessment was completed with the QUIPS tool. Data on the reported accuracy of estimates and information about the clinicians were extracted. Studies were grouped by type of estimate: categorical (the clinician had a predetermined list of outcomes to choose from), continuous (open-ended estimate), or probabilistic (likelihood of surviving a particular time frame). Results: 4,642 records were identified; 42 studies fully met the review criteria. Wide variation was shown with categorical estimates (range 23% to 78%) and continuous estimates ranged between an underestimate of 86 days to an overestimate of 93 days. The four papers which used probabilistic estimates tended to show greater accuracy (c-statistics of 0.74–0.78). Information available about the clinicians providing the estimates was limited. Overall, there was no clear “expert” subgroup of clinicians identified. Limitations: High heterogeneity limited the analyses possible and prevented an overall accuracy being reported. Data were extracted using a standardised tool, by one reviewer, which could have introduced bias. Devising search terms for prognostic studies is challenging. Every attempt was made to devise search terms that were sufficiently sensitive to detect all prognostic studies; however, it remains possible that some studies were not identified. Conclusion: Studies of prognostic accuracy in palliative care are heterogeneous, but the evidence suggests that clinicians’ predictions are frequently inaccurate. No sub-group of clinicians was consistently shown to be more accurate than any other. Implications of Key Findings: Further research is needed to understand how clinical predictions are formulated and how their accuracy can be improved. [ABSTRACT FROM AUTHOR]

Patients seen by the palliative care team often have difficult and intractable symptoms. The current standard of practice to manage these symptoms is the deeply sedating midazolam continuous subcutaneous infusion for patients who are expected to expire within hours to days. Dexmedetomidine provides sedation but lacks evidence in palliative care use. This study describes continuous subcutaneous infusion of dexmedetomidine's effect on refractory pain and delirium. Retrospective, observational chart review and conducted in accordance with SQUIRE (quality improvement study). Twenty adult patients (18 years of age or older) with metastatic cancer disease admitted to three palliative complex care units of Fraser Health who received continuous subcutaneous infusion of dexmedetomidine between January 2017 to August 31, 2019. Average length of dexmedetomidine use was 9 days (1/3 length of stay). Eight of the 13 patients with pain symptoms exhibited an overall decline in pain. Four of the 6 patients with delirium had an initial decrease in delirium, but it did not last beyond the first day. Despite progressive clinical deterioration, adjunctive medications decreased or remained the same for 53% of as needed medications and 65% for regularly scheduled medications. Forty-five percent of patients had ≥50% days of rousable sedation. Hypotension occurred in 85% of patients. Dexmedetomidine provided benefit in managing intractable pain while allowing patients to remain rousable, but only had a short effect on delirium symptoms. [ABSTRACT FROM AUTHOR]

Conversation has been a primary means for the exchange of information since ancient times. Understanding patterns of information flow in conversations is a critical step in assessing and improving communication quality. In this paper, we describe COnversational DYnamics Model (CODYM) analysis, a novel approach for studying patterns of information flow in conversations. CODYMs are Markov Models that capture sequential dependencies in the lengths of speaker turns. The proposed method is automated and scalable, and preserves the privacy of the conversational participants. The primary function of CODYM analysis is to quantify and visualize patterns of information flow, concisely summarized over sequential turns from one or more conversations. Our approach is general and complements existing methods, providing a new tool for use in the analysis of any type of conversation. As an important first application, we demonstrate the model on transcribed conversations between palliative care clinicians and seriously ill patients. These conversations are dynamic and complex, taking place amidst heavy emotions, and include difficult topics such as end-of-life preferences and patient values. We use CODYMs to identify normative patterns of information flow in serious illness conversations, show how these normative patterns change over the course of the conversations, and show how they differ in conversations where the patient does or doesn't audibly express anger or fear. Potential applications of CODYMs range from assessment and training of effective healthcare communication to comparing conversational dynamics across languages, cultures, and contexts with the prospect of identifying universal similarities and unique "fingerprints" of information flow. [ABSTRACT FROM AUTHOR]

Introduction: Polypharmacy in patients with advanced cancer represents a major public health problem, leading to risk of iatrogenesis, decrease of quality of life and increase of healthcare costs. In the field of geriatrics, health policies have been developed to address polypharmacy through the use of deprescribing tools. Recently, palliative care initiatives have been introduced, yet these have not fully considered the specificities of this population, particularly their perceptions. It is therefore important to better understand patients' perceptions of deprescribing in order to adapt tools and actions to make these approaches more effective. Objectives: The aim is to investigate patients' perceptions of deprescribing in palliative oncology care, and to explore factors that may influence patients' attitudes and beliefs about deprescribing and to validate a specific questionnaire (rPATD) in this population. An ancillary study will investigate the relationship between patients' health literacy and their perception of deprescribing. Method: A prospective, observational, multicenter study will be conducted using a sequential mixed exploratory design in a population of patients living with advanced cancer and with a physician-estimated life expectancy of less than 1 year. The study will include an initial qualitative phase. Individual semi-structured interviews using a descriptive approach (thematic analysis) will be conducted (upon saturation). Following analysis of the qualitative data, a quantitative study including 300 patients will be realized to meet secondary objectives. Several data will be collected and 2 self-questionnaires will be administered: the BMQ (beliefs about medicine) and rPATD (perception of deprescribing) possibly supplemented by additional items if required by the qualitative analysis. The auxiliary study will be conducted during this second phase, using a validated self-questionnaire to assess patients' level of literacy. Conclusion: The disparate outcomes will facilitate the understanding of the perception of deprescribing in palliative oncology care, enabling the development of tailored approaches adapted to this population. Trial registration: ClinicalTrials Identifier: NCT06193083. [ABSTRACT FROM AUTHOR]

Introduction: After-hours services are essential in ensuring patients with life limiting illness and their caregivers are supported to enable continuity of care. Telehealth is a valuable approach to meeting after-hours support needs of people living with life-limiting illness, their families, and caregivers in rural and remote communities. It is important to explore the provision of after-hours palliative care services using telehealth to understand the reach of these services in rural and remote Australia. A preliminary search of databases failed to reveal any scoping or systematic reviews of telehealth in after-hours palliative care services in rural or remote Australia. Aim: To review and map the available evidence about the use of telehealth in providing after-hours palliative care services in Australian rural and remote communities. Methods: The proposed scoping review will be conducted using the Arksey and O'Malley methodological framework and in accordance with the Joanna Briggs Institute methodology for scoping reviews. The reporting of the scoping review will be guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). This review will consider research and evaluation of after-hours services using telehealth for palliative care stakeholders in rural and remote Australia. Peer reviewed studies and grey literature published in English from 2000 to May 2021 will be included. Scopus, Web of Science, CINAHL Complete, Embase via Ovid, PsycINFO via Ovid, Emcare via Ovid, Medline via Ovid, and grey literature will be searched for relevant articles. Titles and abstracts will be screened by two independent reviewers for assessment against the inclusion criteria. Data will be extracted and analysed by two reviewers using an adapted data extraction tool and thematic analysis techniques. Diagrams, tables, and summary narratives will be used to map, summarise and thematically group the characteristics of palliative care telehealth services in rural and remote Australia, including stakeholders' perceptions and benefits and challenges of the services. [ABSTRACT FROM AUTHOR]

Communication about life-threatening disease and palliative care is essential but often experienced as difficult by those concerned and has mainly been studied in terms of its verbal components. Despite the fundamentality of nonverbal communication, its dimensions in care, especially in the communication by patients and their significant others, has not been as extensively examined. Drawing on a secondary qualitative content analysis of data from 23 interviews—15 with patients in specialized palliative home care in Sweden and 8 with their significant others—this study aims at understanding and characterizing how patients verbally express experiences of conveying nonverbal cues about life-threatening disease and its consequences and how their significant others express perceiving these cues. Patients expressed experiences of nonverbal communication in the form of cues conveying meaning about their disease and its consequences, often beyond their control. Whether and how the patients reinforced these cues verbally, depended on individual needs, care for others, and evaluations of relationships. Significant others acknowledged the presence of nonverbal cues and tried to interpret their meaning. Both patients and significant others emphasized the importance of nonverbal cues and actively related to how cues in the form of bodily appearance, aids, objects and acts, serve communicative functions about disease and its consequences. These dimensions of nonverbal communication are characterized as: body talk, extension talk and action talk. This study contributes to an international knowledge base on the complexities of nonverbal communicative aspects in these dimensions and how it affects patients and significant others. Professionals should be aware that dimensions of care, such as prescribed aids, from the patients' perspective can be perceived as nonverbal cues that might "speak of" disease progression. [ABSTRACT FROM AUTHOR]

Background: Palliative care helps patients and their families deal with the hardships that come with a life-threatening illness. However, patients were not fully utilizing the palliative care services provided by healthcare facilities for a number of reasons. In Ethiopia, there hasn't been any research done on the variables that influence the utilization of palliative care services. Objective: To assess palliative care service utilization & associated factors affecting cancer patients at public hospitals oncology units in Addis Ababa, Ethiopia. Methods: An institution-based cross-sectional study design was carried out. A structured and pre-tested questionnaire was administered to 404 participants at Tikur Anbesa Specialized Hospital and Saint Paul's Hospital Millennium Medical College from July 4 to August 2, 2022. A systematic random sampling technique was used to select the study participants. The data was collected by ODK-Collect version 3.5 software and exported to excel and then to SPSS version 25 for recoding, cleaning, and analysis. Logistic regression model was employed. P-values <0.05 were regarded as statistically significant. Result: About 404 participants' responded questionnaire giving a 97.6% response rate. The extent of Palliative care service utilization was 35.4% [95% CI: 31.4, 40.3%]. College or university education were 2.3 times more likely and living in a distance of <23 km from PC service centers were 1.8 times more likely to use palliative care services. Factors hindering palliative care service utilization were inability to read & write, treatment side effects, long distance to a health institution, and low satisfaction with the health care service. Conclusion and recommendation: The extent of palliative care service utilization which was low. Factors to palliative care service utilization were clients' education level, treatment side effects, distance to a health institution, and patients' satisfaction. Interventions to enhance health education and counseling of cancer patients, early detection and management of treatment side effects and accessibility of palliative care services for cancer patients should be emphasized and implemented by all concerned stakeholders. [ABSTRACT FROM AUTHOR]

Background: Complementary and alternative medicine (CAM) is a commonly used approach among cancer patients, with a reported prevalence of 14.8 to 73.1% depending on multiple factors. Even though a typical patient-reported reason for using CAM is symptom control, no conclusive evidence could be established for specific symptoms being a predictor for CAM use. Symptom clusters are a novel approach for assessing a multidimensional symptom burden, reflecting the impact of diseases on the patient's quality of life and considering the tendency of symptoms to occur in groups. Material and methods: A single-center cross-sectional study on cancer patients during oncological or palliative care was conducted to identify socio-demographical and clinical characteristics, including symptom clusters of CAM users and non-users. Symptom clusters were defined using latent profile analysis, and multivariable analyses were performed to assess significant factors influencing CAM use. Results: Of 171 cancer patients in this study, 63.7% used CAM alongside oncological treatment or palliative care. The most common CAM therapies were biological and physical therapies, including homeopathy (30.3%), supplements (27.4%), herbs (26.6%), massage (24.8%), and acupuncture (22.0%). Four distinct symptom clusters were identified, of which the cluster drowsiness-depression-anxiety was associated with a 3.83-fold increased chance of using CAM compared to low-symptomatic cancer patients. Multivariate analysis did not show any additional significant predictors of socio-demographical factors. Conclusion: Using the concept of symptom clusters revealed a significant predictor for CAM use, suggesting to be a more conclusive method for assessing symptom burden in cancer patients. In addition, understanding why and how cancer patients turn to CAM can enhance the quality of multidisciplinary communication about its use. [ABSTRACT FROM AUTHOR]

Objective: To understand the knowledge and awareness of palliative care in the Italian-speaking Swiss general population, describing main misconceptions or false beliefs and their relationship with attitudes towards palliative care. Methods: Cross-sectional representative population survey (N = 313). Results: We observed a high awareness of «palliative care,» although it is mainly associated with pain management and the very last days of life. While false beliefs are relatively rare, there is low awareness of goals, targets, and services offered by palliative care. Overall the Italian-speaking Swiss population has a good predisposition towards palliative care, but negative attitudes are more common among those who lack knowledge. More than one-third of respondents are interested in receiving more information about palliative care, especially from their healthcare providers or through dedicated information points. Conclusion and practice implications: Health communication interventions to promote palliative care are needed because there is still significant unclarity about the goals of palliative care, which negatively affects its acceptance. This study instructs on how to intervene specifically in the Italian-speaking part of Switzerland, including what to communicate and how. Further, our findings can inspire similar studies in other Swiss regions or countries that can optimize recognition, knowledge, and understanding and contribute to filling gaps in populations' health service demand and utilization. [ABSTRACT FROM AUTHOR]

Background: Ketamine at subanaesthetic dosages (≤0.5mg/kg) exhibits rapid onset (over hours to days) antidepressant effects against major depressive disorder in people who are otherwise well. However, its safety, tolerability and efficacy are not known for major depressive disorder in people with advanced life-limiting illnesses. Objective: To determine the feasibility, safety, tolerability, acceptability and any antidepressant signal/activity to justify and inform a fully powered study of subcutaneous ketamine infusions for major depressive disorder in the palliative setting. Methods: This was a single arm, open-label, phase II feasibility study (Australian New Zealand Clinical Trial Registry Number—ACTRN12618001586202). We recruited adults (≥ 18-years-old) with advanced life-limiting illnesses referred to four palliative care services in Sydney, Australia, diagnosed with major depressive disorder from any care setting. Participants received weekly subcutaneous ketamine infusion (0.1–0.4mg/kg) over two hours using individual dose-titration design. Outcomes assessed were feasibility, safety, tolerability and antidepressant activity. Results: Out of ninety-nine referrals, ten participants received ketamine and were analysed for responses. Accrual rate was 0.54 participants/month across sites with 50% of treated participants achieving ≥ 50% reduction in baseline Montgomery-Åsberg Depression Rating Scale, meeting feasibility criteria set a priori. There were no clinically relevant harms encountered. Conclusions: A future definitive trial exploring the effectiveness of subcutaneous infusion of ketamine for major depressive disorder in the palliative care setting may be feasible by addressing identified study barriers. Individual dose-titration of subcutaneous ketamine infusions over two hours from 0.1mg/kg can be well-tolerated and appears to produce transient antidepressant signals over hours to days. [ABSTRACT FROM AUTHOR]

Background: Nearly 50 million people worldwide have dementia and the increasing numbers requiring end-of-life and palliative care, has led to national efforts to define standards of care for this patient group. Little research, however, has been done to date about the experience of hospice care for people with dementia accessing these services. This study explores the views of hospice dementia care for bereaved carers of people with dementia and hospice clinicians. Methods: We used purposive sampling for participant recruitment. Semi-structured qualitative interviews were conducted with bereaved carers and hospice clinical staff. Interviews were audio recorded and the transcriptions were analysed through thematic analysis. A total of 12 participants were interviewed from one service in the Northwest region in the UK. All were female and white British. Results: Participants described their experience of hospice dementia care in three main themes: Pre-access to service, roles and responsibility within hospice care, ease and difficulty of last period of end-of-life care. Conclusion: Rapid response teams delivering hospice home care could represent a better option to inpatient care and may be preferred by patients. This type of service, however, may require joined-up care with other community services, and this type of care needs to be considered and planned. Future studies should evaluate this type of community care. [ABSTRACT FROM AUTHOR]

Background: The purpose of this study was to assess willingness of advanced cancer patients to receive palliative care and its determinants at Cancer Care Centre in Kilimanjaro Christian Medical Centre Northern Tanzania. Objective: The purpose of this study was to assess willingness of advanced cancer patients to receive palliative care and its determinants at Cancer Care Centre in Kilimanjaro Christian Medical Centre Northern Tanzania. Methods: This was an institution-based cross-sectional study and the target population was all advanced cancer patients attending care at Cancer care Centre in Northern Tanzania. Data was collected using a structured questionnaire and analysed using Stata for windows 15. A descriptive analysis was conducted to summarize the data using mean standard deviation, while categorical data was summarized using frequency and percentages. Both bivariate and multivariate logistic regression analysis was used to determine the predictors associated with willingness to receive palliative care. Results: The results showed that more than half of the respondents had willingness to accept palliative care. The degree of willingness PC among advanced cancer patients was high 60.6% (95%CI: 55.8–65.3). The predictors which remained significant associated with willingness to receive palliative care in multivariate analysis were the knowledgeable of palliative care [AOR: 2.86; 95%CI: 1.69–4.85] and high perceived benefits of palliative care [AOR: 3.58; 95%CI: 2.12–6.04]. Conclusion: Willingness to accept palliative care services was more than half of the patients just 60.6% among patients with advanced cancer from the study site. Advanced age of a patient, occupations, better knowledge, and perceived benefits for palliative care was the significant predictor for patients' willingness to accept palliative care. [ABSTRACT FROM AUTHOR]

Introduction: The ability of patients to finalise their affairs at the end of life is an often neglected aspect of quality of life (QOL) measurement in palliative care effectiveness research despite compelling evidence of the high value patients place on this domain. Objective: This paper describes the preliminary development and evaluation of a new, single-item, end-of-life patient-reported outcome measure (EOLPRO) designed to capture changes in the ability of patients to finalise their affairs at the end of life. Methods: Cognitive interviews with purposively sampled Australian palliative care patients (N = 9) were analysed thematically to explore content validity. Simultaneously, secondary analysis of data from a randomised controlled trial comparing ketamine and placebo for the management of cancer pain (N = 185) evaluated: construct validity; test-retest reliability; and responsiveness. Results: Preliminary findings suggest patients interpret the new measure consistently. The EOLPRO captures the ability to complete physical tasks and finalise practical matters although it is unclear whether emotional tasks or resolution of relationship issues are considered. Personal and financial affairs should be separated to allow for differences in ability for these two types of affairs. The significant correlation between performance status and EOLPRO scores (r = 0.41, p<0.01, n = 137) and expected relationships between EOLPRO and proximity to death and constipation demonstrated construct validity. Pre- and post-treatment EOLPRO scores moderately agreed (n = 14, κ = 0.52 [95% CI 0.19, 0.84]) supporting reliability. The measure’s apparent lack of sensitivity to discriminate between treatment responders and non-responders may be confounded. Conclusion: Based on the preliminary findings, the EOLPRO should be separated into ‘personal’ and ‘financial’ affairs with further testing suggested, particularly to verify coverage and responsiveness. Initial evaluation suggests that the single-item EOLPRO is a useful addition to QOL outcome measurement in palliative care effectiveness research because common palliative care specific QOL questionnaires do not include or explicitly capture this domain. [ABSTRACT FROM AUTHOR]

Background: The Integrated Palliative Care Outcome Scale for People with Dementia is a promising instrument for nursing home quality improvement and research in dementia care. It enables frontline staff in nursing homes to understand and rate the needs and concerns of people with dementia. We recently adapted the measure to include easy language for users from various educational backgrounds. Objectives: In this study, we examine the inter-rating reliability of the Integrated Palliative Care Outcome Scale for People with Dementia for frontline staff in nursing homes. Methods: In this secondary analysis of an experimental study, 317 frontline staff members in 23 Swiss nursing homes assessed 240 people with dementia from a convenience sample. Reliability for individual items was computed using Fleiss Kappa. Because of the nested nature of the primary data, a generalisability and dependability study was performed for an experimental IPOS-Dem sum score. Results: The individual Integrated Palliative Care Outcome Scale for People with Dementia items showed kappa values between.38 (95% CI.3–.48) and.15 (95% CI.08–.22). For the experimental IPOS-Dem sum score, a dependability index of.57 was found. The different ratings and time between ratings explain less than 2% of the variance in the sum score. The different nursing homes make up 12% and the people with dementia make up 43% of the sum score variance. The dependability study indicates that an experimental IPOS-Dem sum score could be acceptable for research by averaging two ratings. Conclusion: Limited research has been conducted on the measurement error and reliability of patient-centred outcome measures for people with dementia who are living in nursing homes. The Swiss Easy-Read IPOS-Dem is a promising instrument but requires further improvement to be reliable for research or decision making. Future studies may look at its measurement properties for different rater populations or at different stages of dementia. Furthermore, there is a need to establish the construct validity and internal consistency of the easy-read IPOS-Dem. [ABSTRACT FROM AUTHOR]

Introduction: The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox's Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric palliative care due to high mortality and medical complexity of patients, yet little is known about the experiences of staff delivering palliative and end-of-life care. The purpose of this study was to understand the moral experiences of MSF staff to inform program planning and implementation. Methods: This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of documents including MSF clinical guidelines, admission and referral criteria, reports, and training materials. Data analysis followed a modified version of the Qualitative Analysis Guide of Leuven and data were coded using NVivo software. Results: The prevailing understanding of pediatric palliative care among national and international staff was care that prioritized comfort for infants and children who were not expected to survive. Staff's views were informed by their sense of obligation to do no harm, to do their best on behalf of their patients, and religious beliefs about God's role in determining the child's outcome. The authority of doctors, international staff, as well as protocols and guidelines shaped palliative care decision-making. Staff saw clinical guidelines as valuable resources that supported a consistent approach to care over time, while others were concerned that palliative care guidelines were rigidly applied. Conclusion: When integrating palliative care into humanitarian programs, it is important to emphasize the active role of palliative care in reducing suffering. Advocacy for access to the highest level of care possible should continue alongside palliative care integration. While palliative care guidelines are valuable, it is essential to encourage open discussion of staff concerns and adapt care plans based on the family's needs and preferences. [ABSTRACT FROM AUTHOR]

Background: Multi-professional cooperation between healthcare providers is a key quality criterion of hospice and palliative care. While hospice and palliative care networks can support cooperation on a local level, opportunities for wider cooperation through the establishment and development of regional hospice and palliative care networks in Germany have not yet been explored systematically. Aims: The HOPAN study aims at: (1) identifying regional hospice and palliative care networks in Germany, (2) analysing these networks using an adapted quality assessment tool, and (3) proposing setting-sensitive recommendations for network development and exploring the benefits of these recommendations. Methods: HOPAN is a prospective, observational, mixed-methods study comprising three work packages (WPs). In WP1, the stock of regional hospice and palliative care networks in Germany will be identified via database, literature, and internet research. In WP2a, focus groups will be conducted to adapt an existing maturity model for healthcare networks to regional hospice and palliative care networks. In WP2b, a questionnaire will be sent to each identified regional hospice and palliative care network to gain insight into their structure and status of development. In WP2c, group discussions will be conducted to develop setting-sensitive recommendations for these networks. Finally, in WP3, these recommendations will be sent to all participating hospice and palliative care networks, and the benefits of the recommendations will be evaluated via a questionnaire. Discussion: Empirically developed setting-sensitive recommendations should enable the systematic establishment and management of regional hospice and palliative care networks in Germany, considering the specific needs and potential of each network. The study findings are expected to improve the overall development of hospice and palliative care services. Trial registration: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00030629; date of registration: 02 November 2022). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number. [ABSTRACT FROM AUTHOR]

Objective: The proposed scoping review aims to explore international literature on how older people from minority ethnic groups engage with and utilise palliative and end of life care, investigate the barriers and facilitators, and compare how this varies between ethnicities and health conditions. Introduction: Minority ethnic groups make up substantial parts of the populations of many countries around the world. Research has found that there are disparities in access to palliative care and end of life care among minority ethnic groups. Language barriers, cultural values, and socio-demographic factors have been cited as preventing access to quality palliative and end of life care. However, it is unclear how these barriers and inequalities differ across different minority ethnic groups in different countries, and across different health conditions within these groups. Inclusion criteria: The population will be older people of different minority ethnic groups who are receiving palliative or end of life care, family caregivers, and health and social care professionals. The sources of information will include quantitative, qualitative and mixed methods research, and sources that focus on minority ethnic groups' interactions with palliative and end of life care. Methods: A scoping review guided by the Joanna Briggs Institute Manual for Evidence Synthesis. Searches of MEDLINE, Embase, PsycInfo, CINAHL, Scopus, Web of Science, Assia, and the Cochrane Library will be conducted. Citation tracking, reference list checking and grey literature searches will be undertaken. Data will be extracted, charted and summarised descriptively. Implications: This review will highlight the health inequalities present in palliative and end of life care, the research gaps in understudied minority ethnic populations, locations where further study is required, and how barriers and facilitators differ across different ethnic groups and health conditions. The results of this review will be shared with stakeholders and will provide evidence-based recommendations for inclusive palliative and end of life care. [ABSTRACT FROM AUTHOR]

Background: Existential suffering is often a part of the requests for assisted suicide (AS). Its definitions have gained in clarity recently and refer to a distress arising from an inner realization that life has lost its meaning. There is however a lack of consensus on how to manage existential suffering, especially in a country where AS is legal and little is known about the difficulties faced by professionals confronted with these situations. Objectives: To explore the perspectives of Swiss professionals involved in end-of-life care and AS on the management of existential suffering when it is part of AS requests, taking into account the question of roles, as well as on the difficulties they encounter along the way and their views on the acceptability of existential suffering as a motive for AS. Methods: A qualitative study based on face-to-face interviews was performed among twenty-five participants from the fields of palliative and primary care as well as from EXIT right-to-die organization. A semi-structured interview guide exploring four themes was used. Elements from the grounded theory approach were applied. Results: Almost all participants reported experiencing difficulties when facing existential suffering. Opinions regarding the acceptability of existential suffering in accessing AS were divided. Concerning its management, participants referred to the notion of being present, showing respect, seeking to understand the causes of suffering, helping give meaning, working together, psychological support, spiritual support, relieving physical symptoms and palliative sedation. Conclusion: This study offers a unique opportunity to reflect on what are desirable responses to existential suffering when it is part of AS requests. Existential suffering is plural and implies a multiplicity of responses as well. These situations remain however difficult and controversial according to Swiss professionals. Clinicians' education should further address these issues and give professionals the tools to better take care of these people. [ABSTRACT FROM AUTHOR]

Objective: Cancer-related fatigue (CRF) is a disabling chronic condition that cancer survivors could experience during and after recovery and that might benefit from self-managed physical activity (PA) programs. This scoping review aimed to map self-managed PA interventions found in literature for the management of CRF. Methods: Given the heterogeneity of the topic, scoping review methodological frameworks were used. Pubmed, Cinahl and Cochrane databases were searched for primary literature. Inclusion criteria: self-managed PA meant as any exercise program prescribed by a professional either with or without initial supervision and training which then continued independently for a given time frame; patient-reported fatigue assessment included in the outcome measures. Articles dealing with entirely supervised interventions, dietary or psychological-only therapies, and with palliative care were excluded. Results: Of the 543 experimental or observational studies screened, 63 were included. Of these forty-three studies were randomized controlled trials. Data were summarized in tables describing self-managed interventions according to: type of self-managed activity, frequency and duration, strategies to promote adherence, professionals supervising the treatment, outcome measures, and efficacy. A narrative synthesis was also added to further explain findings. Conclusions: We collected the available evidence on PA when this was self-managed by patients after prescription by a healthcare provider. Clinicians and researchers should consider incorporating self-care programs in CRF patients' recovery journey gradually, identifying the best strategies to integrate them into daily life. Researchers should specify the characteristics of PA programs when designing new studies. This review highlighted the areas to be investigated for future studies pertaining to self-managed PA. [ABSTRACT FROM AUTHOR]

Background: The Pediatric Quality of Life and Evaluation of Symptoms Technology Response to Pediatric Oncology Symptom Experience (PQ-Response) intervention aims to integrate specialized pediatric palliative care into the routine care of children, adolescents, and young adults (AYAs) with advanced cancer. Aims: To evaluate whether PQ-Response, compared to usual care, improves patient's health related quality of life (HRQoL) and symptom burden (aim 1), parent psychological distress and symptom-related stress (aim 2), and family and symptom treatment activation (aim 3). Design: Multisite, randomized (1:1), controlled, un-blinded, effectiveness trial comparing PediQUEST Response (intervention) vs usual cancer care (control). Setting: Five US large, tertiary level pediatric cancer centers. Participants: Children (≥2 years old)/AYAs who receive care at any of the participating sites because of advanced cancer or any progressive/recurrent solid or brain tumor and are palliative care "naïve." Target: 200 enrolled patient-parent dyads (minimum goal: 136 dyads randomized, N = 68/arm). Interventions: PediQUEST Response: combines patient-mediated activation (weekly feedback of patient- and parent-reported symptoms and HRQoL to families and providers using the PediQUEST web system) with integration of the palliative care team. Usual Cancer Care: participants receive usual care, which can include palliative care consultation, and use PediQUEST web to answer surveys, with no feedback. Methods: Following enrollment, patients (if ≥5 years) and one parent receive weekly PediQUEST-Surveys assessing HRQoL (Pediatric Quality of Life Inventory 4.0) and symptom burden (PediQUEST-Memorial Symptom Assessment Scale). After a 2-week run-in period, dyads who answer ≥2 PediQUEST surveys per participant (responders), are randomized (concealed allocation) and followed up for 16-weeks. Parents answer six additional surveys (parent outcomes). Outcomes: Primary: mean patient HRQoL score over 16-weeks as reported by a) the parent; and b) the patient if ≥5 years-old. Secondary: patient's symptom burden; parent's anxiety, depressive symptoms, symptom-related stress; family activation; and symptom treatment activation. Trial registration: ClinicalTrials.gov (NCT03408314) 1/24/18. https://clinicaltrials.gov/ct2/show/NCT03408314. [ABSTRACT FROM AUTHOR]

Objectives: In England, Electronic Palliative Care Coordination Systems (EPaCCS) were introduced in 2008 to support care coordination and delivery in accordance with patient preferences. Despite policy supporting their implementation, there has been a lack of rigorous evaluation of EPaCCS and it is not clear how they have been translated into practice. This study sought to examine the current national implementation of EPaCCS, including their intended impact on patient and service outcomes, and barriers and facilitators for implementation. Methods: We conducted a national cross-sectional online survey of end-of-life care commissioning leads for Clinical Commissioning Groups (CCGs) in England. We enquired about the current implementation status of EPaCCS, their role in information sharing and intended impact, and requested routine patient-level data relating to EPaCCS. Results: Out of 135 CCGs, 85 (63.0%) responded, with 57 (67.1%) having operational EPaCCS. Use of EPaCCS were confined to healthcare providers with most systems (67%) not supporting information sharing with care homes and social care providers. Most systems (68%) sought to facilitate goal concordant care, although there was inconsonance between intended impacts and monitoring measures used. Common challenges to implementation included healthcare professionals' limited engagement. Only one-third of patients had an EPaCCS record at death with limited recording of patient preferences. Conclusions: Critical gaps exist in engagement with EPaCCS and their ability to facilitate information sharing across care providers. The limited alignment between stated goals of EPaCCS and their monitoring impedes efforts to understand which characteristics of systems can best support care delivery. [ABSTRACT FROM AUTHOR]

Background: Accessing quality palliative care, especially at the end of life is vital in reducing physical and emotional distress and optimising quality of life. For people living in rural and remote Australia, telehealth services can be effective in providing access to after-hours palliative care. Objective: To review and map the available evidence on the use of telehealth in providing after-hours palliative care services in rural and remote Australia. Method: Scoping review using Arksey and O'Malley methodological framework. Findings are reported in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Scopus, Web of Science, CINAHL Complete, Embase via Ovid, Emcare via Ovid, and Medline via Ovid databases were searched. Peer-reviewed studies and grey literature published in English from 2000 to May 2021 were included. Results: Twelve studies were included in the review. Four main themes were identified: 1) Stakeholder perceptions of service; 2) benefits to services and users; 3) service challenges; and 4) recommendations for service improvement. Conclusion: Telehealth can connect patients and families with healthcare professionals and enable patients to continue receiving care at home. However, challenges relating to patients, service, staff skills, and experience need to be overcome to ensure the success and sustainability of this service. Improved communication and care coordination, better access to patient records, and ongoing healthcare professional education are required. Implications: Protocols, comprehensive policy documents and standardized operating procedures to guide healthcare professionals to provide after-hours palliative care is needed. Ongoing education and training for staff is crucial in managing patients' symptoms. Existing service gaps need to be explored and alternative models of after-hours palliative care need to be tested. [ABSTRACT FROM AUTHOR]

Background: Prognostic information is important for patients with cancer, their families, and clinicians. In practice, survival predictions are made by clinicians based on their experience, judgement, and intuition. Previous studies have reported that clinicians' survival predictions are often inaccurate. This study reports a secondary analysis of data from the Prognosis in Palliative care Study II (PiPS2) to assess the accuracy of survival estimates made by doctors and nurses. Methods and findings: Adult patients (n = 1833) with incurable, locally advanced or metastatic cancer, recently referred to palliative care services (community teams, hospital teams, and inpatient palliative care units) were recruited. Doctors (n = 431) and nurses (n = 777) provided independent prognostic predictions and an agreed multi-professional prediction for each patient. Clinicians provided prognostic estimates in several formats including predictions about length of survival and probability of surviving to certain time points. There was a minimum follow up of three months or until death (whichever was sooner; maximum follow-up 783 days). Agreed multi-professional predictions about whether patients would survive for days, weeks or months+ were accurate on 61.9% of occasions. The positive predictive value of clinicians' predictions about imminent death (within one week) was 77% for doctors and 79% for nurses. The sensitivity of these predictions was low (37% and 35% respectively). Specific predictions about how many weeks patients would survive were not very accurate but showed good discrimination (patients estimated to survive for shorted periods had worse outcomes). The accuracy of clinicians' probabilistic predictions (assessed using Brier's scores) was consistently better than chance, improved with proximity to death and showed good discrimination between groups of patients with different survival outcomes. Conclusions: Using a variety of different approaches, this study found that clinicians predictions of survival show good discrimination and accuracy, regardless of whether the predictions are about how long or how likely patients are to survive. Accuracy improves with proximity to death. Although the positive predictive value of estimates of imminent death are relatively high, the sensitivity of such predictions is relatively low. Despite limitations, the clinical prediction of survival should remain the benchmark against which any innovations in prognostication are judged. Study registration: ISRCTN13688211. http://www.isrctn.com/ISRCTN13688211. [ABSTRACT FROM AUTHOR]

Background: Individuals receiving palliative care (PC) are generally thought to prefer to receive care and die in their homes, yet little research has assessed the quality of home- and community-based PC. This project developed a set of valid and reliable quality indicators (QIs) that can be generated using data that are already gathered with interRAI assessments—an internationally validated set of tools commonly used in North America for home care clients. The QIs can serve as decision-support measures to assist providers and decision makers in delivering optimal care to individuals and their families. Methods: The development efforts took part in multiple stages, between 2017–2021, including a workshop with clinicians and decision-makers working in PC, qualitative interviews with individuals receiving PC, families and decision makers and a modified Delphi panel, based on the RAND/ULCA appropriateness method. Results: Based on the workshop results, and qualitative interviews, a set of 27 candidate QIs were defined. They capture issues such as caregiver burden, pain, breathlessness, falls, constipation, nausea/vomiting and loneliness. These QIs were further evaluated by clinicians/decision makers working in PC, through the modified Delphi panel, and five were removed from further consideration, resulting in 22 QIs. Conclusions: Through in-depth and multiple-stakeholder consultations we developed a set of QIs generated with data already collected with interRAI assessments. These indicators provide a feasible basis for quality benchmarking and improvement systems for care providers aiming to optimize PC to individuals and their families. [ABSTRACT FROM AUTHOR]

In a predominantly biomedical healthcare model focused on cure, providing optimal, person-centred palliative care is challenging. The general public, patients, and healthcare professionals are often unaware of palliative care's benefits. Poor interdisciplinary teamwork and limited communication combined with a lack of early identification of patients with palliative care needs contribute to sub-optimal palliative care provision. We aimed to develop a national quality framework to improve availability and access to high-quality palliative care in a mixed generalist-specialist palliative care model. We hypothesised that a whole-sector approach and a modified Delphi technique would be suitable to reach this aim. Analogous to the international AGREE guideline criteria and employing a whole-sector approach, an expert panel comprising mandated representatives for patients and their families, various healthcare associations, and health insurers answered the main question: 'What are the elements defining high-quality palliative care in the Netherlands?'. For constructing the quality framework, a bottleneck analysis of palliative care provision and a literature review were conducted. Six core documents were used in a modified Delphi technique to build the framework with the expert panel, while stakeholder organisations were involved and informed in round-table discussions. In the entire process, preparing and building relationships took one year and surveying, convening, discussing content, consulting peers, and obtaining final consent from all stakeholders took 18 months. A quality framework, including a glossary of terms, endorsed by organisations representing patients and their families, general practitioners, elderly care physicians, medical specialists, nurses, social workers, psychologists, spiritual caregivers, and health insurers was developed and annexed with a summary for patients and families. We successfully developed a national consensus-based patient-centred quality framework for high-quality palliative care in a mixed generalist-specialist palliative care model. A whole-sector approach and a modified Delphi technique are feasible structures to achieve this aim. The process we reported may guide other countries in their initiatives to enhance palliative care. [ABSTRACT FROM AUTHOR]

Aim: The aim of this scoping review was to determine the extent of off-patent prescription medicine use beyond registered indications in various Australian clinical settings. Method: The review followed the Joanna Briggs Institute approach and reported using PRISMA Extension for Scoping Reviews. Online databases were used to identify published literature about off-patent registered prescription medicines used for off-label indications in Australian public hospital, community and primary healthcare settings. In addition, empirical data from the Queensland and the South Australian state-wide medicine formularies were screened for the same medication/off-label indication dyads identified in the literature, and other locally approved uses. Results: Overall, fourteen studies were included, conducted in public hospitals (n = 11), palliative care units (n = 2) and the community setting (n = 1). There were 213 reports extracted from the literature describing off-patent registered prescription medicines used for off-label indications, representing 128 unique medication/off-label indication dyads and 32 different medicines. Of these, just five medication/off-label indication dyads were approved for use on both the Queensland and South Australian state-wide medicine formularies, with 12 others only approved for use in Queensland and 16 others only approved for use in South Australia. Further examination of these state-wide formularies demonstrated that the use of off-patent registered prescription medicines beyond registered indications is more extensive than has been reported to date in the literature. There were 28 additional medication/off-label indication dyads approved on the Queensland state-wide medicine formulary and 14 such examples approved for use in South Australia. Of these, just two medication/off-label indication dyads were approved for use on both formularies. Conclusion: The extent to which off-patent registered prescription medicines have been repurposed in clinical settings for off-label indications in Australia is greater than previously reported in the literature. Usage and funded availability of certain medication/off-label indication dyads, varies across Australia. These results further expose the two tiered system of medicines regulation in Australia, and its impact on equity of access to medicines. Further research is required to support policy change to encourage submission of registration updates for off-patent prescription medicines. [ABSTRACT FROM AUTHOR]

As life expectancy has increased, a growing number of people experience conditions, including cancers, that carry complex health and social needs. Palliative care services have the potential to address these needs but face significant obstacles. One major obstacle is suboptimal interprofessional collaboration. This study's goal was an in-depth exploration of interactional and organizational barriers and supports of collaboration in palliative care in Switzerland. We sought the perspectives of health care professionals, patients' family members and leaders and experts in oncology/palliative care delivery (key informants) through interviews and focus groups with fifty HPs and key informants and ten patients' family members. Qualitative analyses of interviews and focus groups used framework analysis. We identified three major themes of interaction: personal characteristics, communication, and connectedness with other health care professionals; and three major organizational themes: service characteristics, standardized communication and processes, and service coordination and promotion. Based on our findings, we recommend that health care professionals consider strategies to increase their collaboration and communication skills and opportunities to interact. We advocate the implementation of methods for coordinating services, standardization of consultation/referral procedures and communication between health care professionals, and the promotion of underutilized services to foster successful, sustainable collaboration. [ABSTRACT FROM AUTHOR]

Introduction: This study examined emergency department (ED) presentations of patients with end of life (EOL) conditions and patients having met and unmet palliative care needs were compared. Methods: Presentations for EOL conditions were prospectively identified and screened for palliative care needs. Descriptive data were reported as proportions, means or medians. Bi-variable analysis for dichotomous and continuous variables were performed by chi-squared and T-tests (p≤0.01), respectively. A multivariable logistic regression model identified factors associated with having unmet palliative needs and reported adjusted odds ratios (aOR) with 95% confidence intervals (CI). Results: Overall, 663 presentations for EOL conditions were identified; 518 (78%) involved patients with unmet palliative care needs. Presentations by patients with unmet palliative needs were more likely to involve consultations (80% vs. 67%, p = 0.001) and result in hospitalization (69% vs. 51%, p<0.001) compared to patients whose palliative needs were met. Patients with unmet palliative care needs were more likely to have previous ED visits (73% unmet vs. 48% met; p<0.001). While medication, procedures, investigations and imaging ordering were high across all patients with EOL conditions, there were no significant differences between the groups. Consultations with palliative specialists in the ED (6% unmet vs. 1% met) and following discharge (29% unmet vs. 18% met) were similarly uncommon. Patients having two or more EOL conditions (aOR = 2.41; 95% CI: 1.16, 5.00), requiring hospitalization (aOR = 1.93; 95% CI: 1.30, 2.87), and dying during the ED visit (aOR = 2.15; 95% CI: 1.02, 4.53) were strongly associated with having unmet palliative care needs. Conclusions: Most ED presentations for EOL conditions were made by patients with unmet palliative care needs, who were significantly more likely to require consultation, hospitalization, and to die. Referrals to palliative care services during and after the ED visit were infrequent, indicating important opportunities to promote these services. [ABSTRACT FROM AUTHOR]

In order to investigate controversies surrounding the desire to die phenomenon in palliative care by analyzing expert opinions on the topic, we carried out a secondary qualitative data analysis of free text comments collected during a Delphi survey that was designed to develop a conversation aid for dealing with desire to die in everyday clinical practice. Between 01/2018 and 03/2018, a two-round Delphi survey was carried out with national (German) and international palliative care experts. Free text comments were reinvestigated to identify controversies surrounding the desire to die phenomenon. An additional in-depth analysis focused on statements expressing attitudes towards proactively addressing (potential) desires to die. Within the Delphi survey, 103 of 149 multi-professional participants (almost all of them with practical and only six with exclusively theoretical expertise in palliative care) generated 444 free text comments. Thereof, we identified three main categories related to dealing with desire to die: "outer framework", "extended care system" and "health-professional-patient-relationship". Ambivalences, taboos and uncertainties surrounding desire to die in palliative care became apparent. Experts are divided concerning the practice of proactively addressing desire to die. Even if these conversations–especially the proactive approach–are also viewed critically, we conclude that open-ended and respectful communication about desire to die between health professionals and patients can be understood as an eligible intervention in palliative care. Proactively addressing the topic is a possible way to open up such conversations. [ABSTRACT FROM AUTHOR]

Objectives: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. Results: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. Conclusions: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping. [ABSTRACT FROM AUTHOR]

Background: To date, there has been no systematic research on the intermediate level service (level 2) in outpatient palliative care that was introduced in Germany in 2017. Accordingly, the Polite research project aims at: (1) investigating the current state of level 2 palliative care and (2) developing recommendations for its optimisation. Methods: The multi-perspective, observational study will follow a mixed-methods approach across two study phases. In phase 1a, quantitative routinely collected data from a statutory general local health insurance provider will be used to identify patients who received level 2 or other outpatient palliative care in the years 2017–2019. In phase 1b, a questionnaire will be sent to all registered general practitioners (GPs) in Lower Saxony to collect information on the number and characteristics of physicians offering level 2 palliative care. In phase 1c, a quantitative, standardised online questionnaire for teams providing specialised outpatient palliative care will be administered to assess the interfaces of level 2 palliative care. In phase 2a, the results from phases 1a–c will be discussed in an expert workshop with the aim of developing ideas to adapt and optimise level 2 outpatient palliative care. Finally, in phase 2b, the empirically derived recommendations from phases 1 and 2a will be agreed upon via a multi-round Delphi survey involving experts with sufficient influence to promote the project results and recommendations nationally. Discussion: The results of the project will facilitate the optimisation of outpatient palliative care, as well as its administration, nationwide. Trial registration: The study was registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00024785); date of registration: 06th May 2021) and is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number. [ABSTRACT FROM AUTHOR]

Introduction: Palliative care is still a new concept in many developing countries like Bangladesh. Basic knowledge about palliative care is needed for all physicians to identify and provide this care. This study aims to assess the preliminary knowledge level and the misconceptions about this field among physicians. Methods: This cross-sectional study was conducted among 479 physicians using a self-administered structured questionnaire adapted from Palliative Care Knowledge Scale (PaCKs) on various digital social media platforms from December 2019 to February 2020. Chi-square, Fisher's extract test, and the Monte Carlo extract test was done to compare the knowledge level with the study subjects' demographic variables. Results: An almost equal number of physicians of both genders from four major specialties and their allied branches took part in the study (response rate 23.9%). The majority (71%) of the respondents had an average to an excellent level of knowledge about palliative care, with a median score of 11.0. Although most physicians had average knowledge about the primary goals and general concepts of palliative care, misconceptions are highly prevalent. The commonly present misconceptions were that palliative care discourages patients from consulting other specialties (88.9%), refrains them from taking curative treatments (83.1%), and this care is only for older adults (74.5%), cancer patients (63%), and the last six months of life (56.4%). Age, educational qualifications, and specialties had significant relationships (P<0.05) with the level of knowledge. Conclusion: Despite having average or above knowledge about palliative care, the physicians' prevailing misconceptions act as a barrier to recognizing the need among the target populations. So, proper education and awareness among the physicians are necessary to cross this field's barrier and development. [ABSTRACT FROM AUTHOR]

Introduction: Access to essential medicines (EMs) is a basic human right. Non-availability and shortages of EMs are reported for Pakistan but there is insufficient data to define the nature and magnitude of this problem. The current study is designed to systematically analyze the medicines included in the National Essential Medicines List (NEML) for their availability through comprehensive document analysis. Methods: An expanded list of medicinal items was developed using the NEML of Pakistan (2018) to enlist individual medicines with their specifications. Registration status of the medicines was searched using three publicly accessible information sources; Pharmaguide 25th Edition, 2018–19, the on-line Drug Information System, and the Mobile Application Pharmapedia followed by a later 3-step validation of the data. The unregistered EMs were then further categorized into three subgroups in accordance with their possible remedial strategies. Findings: The 19 studied categories comprised 690 EMs and it was found that 179 (26%) of these EMs don not have a registration status. However, it was also identified that the availability of 47 (26.2%) out of 179 unregistered EMs can be enssured by strengthening compounding services, and prioritizing registration of age-appropriate formulations. Availability of another 39 (21.7%) such medicines can be ensured by revising the NEML or the product registrations for the slight differences in their different specifications. The categories showing high proportion of unregistered medicines included anti-Parkinson's medicines (100%), antidotes and other substances used in poisoning (60%), diuretics (47%), anticonvulsants/antiepileptics (42%), hormones and other endocrine medicines and contraceptives (38%), medicines for mental and behavioral disorders (30%), anti-infectives (27%), medicines for pain and palliative care (26%), medicines for neonatal care (25%), medicines for diseases of joint (25%), gastrointestinal medicines (24%) and cardiovascular medicines (15%). Conclusion: The study shows the absence of registration status of a significant number of EMs in Pakistan. This could be major barrier in their access. Strategies are needed to strengthen the processes of their registration on priority basis. [ABSTRACT FROM AUTHOR]

Several organizational factors facilitate or hinder information transfer in palliative care teams. According to past research, organizational factors that reduce information transfer include the inconsistent use of shared electronic patient files, frequent changes of healthcare staff, a lack of opportunities for personal exchange, and a lack of evaluation of collaborative processes. Insufficient information sharing between professionals can negatively impact patient safety, whereas studies have shown that some organizational factors improve collaboration between professionals and thus contribute to improved patient outcomes. The main purpose of this study is thus to investigate whether, and if so how, organizational factors contribute to successful information exchange in palliative care teams in Switzerland, while also accounting for the different care contexts of primary and specialized palliative care. A nationwide survey was aimed at medical professionals working in palliative care. In total, 379 participants (mean age = 49.8 years, SD = 10.3) were included in this study. Two main outcome variables were examined: healthcare providers' satisfaction with information transfer in their team and their overall satisfaction with communication in their team. Hypotheses were tested by employing structural equation modeling. Findings revealed that the strongest predictors for effective information transfer in palliative care teams were sufficient opportunities for face-to-face meetings and supervision alongside feedback tools to improve collaborative practices and the application of guidelines and standards for collaboration. Face-to-face meetings were an even greater contributor to information transfer in specialized settings, whereas sharing the same work-based values with colleagues was considered more important in primary settings. Results from this study contribute to the existing literature elucidating how information transfer is facilitated in the field of palliative care. If proposed measures are implemented, this could possibly improve patient outcomes in palliative care. Furthermore, the findings can be useful for healthcare organizations and associations to make more efficient resource allocation decisions with the aim to optimize information transfer within the workforce. [ABSTRACT FROM AUTHOR]

Background: Prognosis in Palliative care Study (PiPS) models predict survival probabilities in advanced cancer. PiPS-A (clinical observations only) and PiPS-B (additionally requiring blood results) consist of 14- and 56-day models (PiPS-A14; PiPS-A56; PiPS-B14; PiPS-B56) to create survival risk categories: days, weeks, months. The primary aim was to compare PIPS-B risk categories against agreed multi-professional estimates of survival (AMPES) and to validate PiPS-A and PiPS-B. Secondary aims were to assess acceptability of PiPS to patients, caregivers and health professionals (HPs). Methods and findings: A national, multi-centre, prospective, observational, cohort study with nested qualitative sub-study using interviews with patients, caregivers and HPs. Validation study participants were adults with incurable cancer; with or without capacity; recently referred to community, hospital and hospice palliative care services across England and Wales. Sub-study participants were patients, caregivers and HPs. 1833 participants were recruited. PiPS-B risk categories were as accurate as AMPES [PiPS-B accuracy (910/1484; 61%); AMPES (914/1484; 61%); p = 0.851]. PiPS-B14 discrimination (C-statistic 0.837) and PiPS-B56 (0.810) were excellent. PiPS-B14 predictions were too high in the 57–74% risk group (Calibration-in-the-large [CiL] -0.202; Calibration slope [CS] 0.840). PiPS-B56 was well-calibrated (CiL 0.152; CS 0.914). PiPS-A risk categories were less accurate than AMPES (p<0.001). PiPS-A14 (C-statistic 0.825; CiL -0.037; CS 0.981) and PiPS-A56 (C-statistic 0.776; CiL 0.109; CS 0.946) had excellent or reasonably good discrimination and calibration. Interviewed patients (n = 29) and caregivers (n = 20) wanted prognostic information and considered that PiPS may aid communication. HPs (n = 32) found PiPS user-friendly and considered risk categories potentially helpful for decision-making. The need for a blood test for PiPS-B was considered a limitation. Conclusions: PiPS-B risk categories are as accurate as AMPES made by experienced doctors and nurses. PiPS-A categories are less accurate. Patients, carers and HPs regard PiPS as potentially helpful in clinical practice. Study registration: ISRCTN13688211. [ABSTRACT FROM AUTHOR]

Purpose: The Palliative Prognostic (PaP) score; Palliative Prognostic Index (PPI); Feliu Prognostic Nomogram (FPN) and Palliative Performance Scale (PPS) have all been proposed as prognostic tools for palliative cancer care. However, clinical judgement remains the principal way by which palliative care professionals determine prognoses and it is important that the performance of prognostic tools is compared against clinical predictions of survival (CPS). Methods: This was a multi-centre, cohort validation study of prognostic tools. Study participants were adults with advanced cancer receiving palliative care, with or without capacity to consent. Key prognostic data were collected at baseline, shortly after referral to palliative care services. CPS were obtained independently from a doctor and a nurse. Results: Prognostic data were collected on 1833 participants. All prognostic tools showed acceptable discrimination and calibration, but none showed superiority to CPS. Both PaP and CPS were equally able to accurately categorise patients according to their risk of dying within 30 days. There was no difference in performance between CPS and FPN at stratifying patients according to their risk of dying at 15, 30 or 60 days. PPI was significantly (p<0.001) worse than CPS at predicting which patients would survive for 3 or 6 weeks. PPS and CPS were both able to discriminate palliative care patients into multiple iso-prognostic groups. Conclusions: Although four commonly used prognostic algorithms for palliative care generally showed good discrimination and calibration, none of them demonstrated superiority to CPS. Prognostic tools which are less accurate than CPS are of no clinical use. However, prognostic tools which perform similarly to CPS may have other advantages to recommend them for use in clinical practice (e.g. being more objective, more reproducible, acting as a second opinion or as an educational tool). Future studies should therefore assess the impact of prognostic tools on clinical practice and decision-making. [ABSTRACT FROM AUTHOR]

Introduction: In Ethiopia there is an extensive unmet need for palliative care, while the burden of non-communicable diseases and cancer is increasing. This study aimed to explore palliative care needs and preferences of patients, their caregivers, and the perspective of stakeholders on service provision in palliative programs for women, mostly affected by cervical cancer and breast cancer. Methods: A rapid program evaluation using a qualitative study approach was conducted in three home-based palliative care programs in Addis Ababa and Yirgalem town, Ethiopia. Female patients enrolled in the programs, and their primary caregivers were interviewed on palliative care needs, preferences and service provision. We explored the views of purposely selected stakeholders on the organization of palliative care and its challenges. Audio-taped data was transcribed verbatim and translated into English and an inductive thematic analysis was applied. Descriptive analyses were used to label physical signs and symptoms using palliative outcome scale score. Results: A total of 77 interviews (34 patients, 12 primary caregivers, 15 voluntary caregivers, 16 stakeholders) were conducted. The main physical complaints were moderate to severe pain (70.6%), followed by anorexia (50.0%), insomnia, nausea and vomiting (41.2%). Social interaction and daily activities were hampered by the patients' condition. Both patients and caregivers reported that programs focus most on treatment of symptoms, with limited psychosocial, emotional, spiritual and economic support. Lack of organizational structures and policy directions limit the collaboration between stakeholders and the availability of holistic home-based palliative care services. Conclusions: Although female patients and caregivers appreciated the palliative care and support provided, the existing services did not cover all needs. Pain management and all other needed supports were lacking. Multi-sectorial collaboration with active involvement of community-based structures is needed to improve quality of care and access to holistic palliative care services. [ABSTRACT FROM AUTHOR]

Background: Very few measures are used successfully as part of routine care within national palliative care outcome programs. Only a handful of studies examine these measures. The aim of this study is to evaluate the validity of a measure used in a national outcomes program: the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). Methods: A retrospective multi-site cohort study with secondary analysis of routinely collected patient-level data to assess PCOC SAS's internal consistency, construct validity, reliability, interpretability, acceptability and sensitivity. The analyses used two sets, with data collected by inpatient and community palliative care services registered with the Australian national PCOC. Results: Dataset one included 1,117 patients receiving palliative care from 21 services. Dataset two included 5,294 patients receiving palliative care from 119 PCOC services. PCOC SAS demonstrated the ability to detect and discriminate distress by palliative care phase, functional status and diagnosis. Excellent and good convergent and discriminant validity were demonstrated. Fair through to substantial inter-rater and intra-rater reliability levels were evidenced. Sufficient interpretability resulted along with necessary levels of acceptability and sensitivity. Conclusion: PCOC SAS is a valid and reliable patient-reported outcome measure suitable for use in routine clinical care with patients requiring palliative and or end-of-life care, including in national outcomes programs. [ABSTRACT FROM AUTHOR]

Workload in the nursing profession is high, which is associated with poor health. Thus, it is important to get a proper understanding of the working situation and to analyse factors which might be able to mitigate the negative effects of such a high workload. In Germany, many people with serious or life-threatening illnesses are treated in non-specialized palliative care settings such as nursing homes, hospitals and outpatient care. The purpose of the present study was to investigate the buffering role of resources on the relationship between workload and burnout among nurses. A nationwide cross-sectional survey was applied. The questionnaire included parts of the Copenhagen Psychosocial Questionnaire (COPSOQ) (scale 'quantitative demands' measuring workload, scale 'burnout', various scales to resources), the resilience questionnaire RS-13 and single self-developed questions. Bivariate and moderator analyses were performed. Palliative care aspects, such as the 'extent of palliative care', were incorporated to the analyses as covariates. 497 nurses participated. Nurses who reported 'workplace commitment', a 'good working team' and 'recognition from supervisor' conveyed a weaker association between 'quantitative demands' and 'burnout' than those who did not. On average, nurses spend 20% of their working time with palliative care. Spending more time than this was associated with 'burnout'. The results of our study imply a buffering role of different resources on burnout. Additionally, the study reveals that the 'extent of palliative care' may have an impact on nurse burnout, and should be considered in future studies. [ABSTRACT FROM AUTHOR]

Background and objectives: People living with dementia deserve to experience the benefits of receiving palliative care and end-of-life services and supports, yet they often do not receive this care compared to those with other terminal diseases. People living with dementia in rural areas often face additional challenges to accessing such care. The purpose of this scoping review was to systematically review and synthesize the literature on palliative and end-of-life care for people with dementia living in rural areas, and to identify and describe key findings and gaps in the literature. Methods: A collaborative research team approach was used in an iterative process across all stages of this review. Systematic, comprehensive searches were conducted across ten databases and eight targeted websites for relevant peer-reviewed, original research and other less formal literature, published in English, which yielded a total of 4476 results. After duplicate removal, screening, and review, 24 items were included for synthesis. Results: All items were described and illustrated by frequency distribution, findings were grouped thematically, and five key themes emerged, including: 1) Knowledge about dementia, 2) Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3) Decision-making about care, the value of a person-centered approach and collaborative support, 4) Perspectives on artificial nutrition, hydration, and comfort care, and 5) Quality of life and death. The main gap identified was literature pertaining to rural populations, especially from locations other than the United States. The influence of rurality on relevant findings was mixed across rural-urban comparison studies, as was the effect of sex and gender across the literature. Conclusions: Several areas were highlighted including the importance of increasing knowledge about dementia, having early conversations about advanced care and treatment options, providing a person-centered approach, and the potential for using technology to address rural access issues. These findings can be used to inform future research and policy and the development of services, supports, and strategies for rural people living with dementia. Further research is recommended. [ABSTRACT FROM AUTHOR]

Background: Palliative care is an essential part of medical practice but it remains limited, inaccessible, or even absent in low and middle income countries. Objectives: To evaluate the general knowledge, attitudes, and practices of Mozambican physicians on palliative care. Methods: A cross–sectional observational study was conducted between August 2018 and January 2019 in the 3 main hospitals of Mozambique, in addition to the only hospital with a standalone palliative care service. Data was collected from a self-administered survey directed to physicians in services with oncology patients. Results: Two hundred and seven out of 306 physicians surveyed answered the questionnaire. The median physician age was 38 years. Fifty-five percent were males, and 49.8% residents. The most common medical specialty was surgery with 26.1%. Eighty percent of physicians answered that palliative care should be provided to patients when no curative treatments are available; 87% believed that early integration of palliative care can improve patients' quality of life; 73% regularly inform patients of a cancer diagnosis; 60% prefer to inform the diagnosis and prognosis to the family/caregivers. Fifty percent knew what a "do-not-resuscitate" order is, and 51% knew what palliative sedation is. Only 25% of the participants answered correctly all questions on palliative care general knowledge, and only 24% of the participants knew all answers about euthanasia. Conclusions: Mozambican physicians in the main hospitals of Mozambique have cursory knowledge about palliative care. Paternalism and the family-centered model are the most prevalent. More interventions and training of professionals are needed to improve palliative care knowledge and practice in the country. [ABSTRACT FROM AUTHOR]

Introduction: An acute shortage of senior mentors saw the Palliative Medicine Initiative (PMI) combine its novice mentoring program with electronic and peer mentoring to overcome insufficient mentoring support of medical students and junior doctors by senior clinicians. A three-phased evaluation was carried out to evaluate mentees' experiences within the new CNEP mentoring program. Methods: Phase 1 saw use of a Delphi process to create a content-valid questionnaire from data drawn from 9 systematic reviews of key aspects of novice mentoring. In Phase 2 Cognitive Interviews were used to evaluate the tool. The tool was then piloted amongst mentees in the CNEP program. Phase 3 compared mentee's experiences in the CNEP program with those from the PMI's novice mentoring program. Results: Thematic analysis of open-ended responses revealed three themes–the CNEP mentoring process, its benefits and challenges that expound on the descriptive statistical analysis of specific close-ended and Likert scale responses of the survey. The results show mentee experiences in the PMI's novice mentoring program and the CNEP program to be similar and that the addition of near peer and e-mentoring processes enhance communications and support of mentees. Conclusion: CNEP mentoring is an evolved form of novice mentoring built on a consistent mentoring approach supported by an effective host organization. The host organization marshals assessment, support and oversight of the program and allows flexibility within the approach to meet the particular needs of mentees, mentors and senior mentors. Whilst near-peer mentors and e-mentoring can make up for the lack of senior mentor availability, their effectiveness hinges upon a common mentoring approach. To better support the CNEP program deeper understanding of the mentoring dynamics, policing and mentor and mentee training processes are required. The CNEP mentoring tool too needs to be validated. [ABSTRACT FROM AUTHOR]

Background: Parkinson's disease (PD) is a progressive degenerative disease without curative treatment perspectives. Even when palliative care for people with PD seems to be beneficial, the need for palliative care is often not timely recognized. Aim: Our aim was to develop a tool that can help healthcare professionals in timely identifying palliative care needs in people with PD. Design: We used a mixed-methods design, including individual and focus group interviews and a three-round modified Delphi study with healthcare professionals from a multidisciplinary field. Results: Data from the interviews suggested two distinct moments in the progressive PD trajectory: 1) an ultimate moment to initiate Advance Care Planning (ACP); and 2) the actual start of the palliative phase. During the Delphi process, six indicators for ACP were identified, such as presence of frequent falls and first unplanned hospital admission. The start of the palliative phase involved four indicators: 1) personal goals have started to focus on maximization of comfort; 2) care needs have changed; 3) PD drug treatment has become less effective or an increasingly complex regime of drug treatments is needed; and 4) specific PD-symptoms or complications have appeared, such as significant weight loss, recurrent infections, or progressive dysphagia. Indicators for both moments are included in the RADboud indicators for PAlliative Care Needs in Parkinson's Disease (RADPAC-PD) tool. Conclusion: The RADPAC-PD may support healthcare professionals in timely initiating palliative care for persons with PD. Identification of one or more indicators can mark the need for ACP or the palliative phase. We expect that applying the RADPAC-PD, for example on an annual basis throughout the PD trajectory, can facilitate identification of the palliative phase in PD patients in daily practice. However, further prospective research is needed on the implementation of the RADPAC-PD. [ABSTRACT FROM AUTHOR]

Context: Despite being associated with dependence and social stigma, methadone is a potential end-of-life option in complex cancer pain. Objectives: To explore attitudes and opinions about methadone and its potential role and current use in complex end-of-life pain. Methods: Semi-structured interviews (n = 30) with physicians in specialized palliative care, transcribed and analyzed with conventional qualitative content analysis. Results: According to the physicians, patients and relatives expressed unexpectedly few negative attitudes, not affecting methadone's use as an analgesic. Complex pain in bone-metastatic cancer of the prostate, breast and kidney, as well as pancreatic cancer and sarcomas were recurrent suggestions of appropriate indications. Most of the informants stated that they applied a mechanism-based treatment and mainly prescribed low-dose methadone as an add-on to an existing opioid therapy to benefit from methadone´s proposed NMDA-receptor inhibiting properties, e.g. in cases with reduced opioid sensitivity. Despite its complex pharmacokinetics with a long half-life, most informants expressed defined strategies to avoid side-effects such as respiratory depression, especially when initiating treatment in the home-care setting. While many palliative care physicians expressed an overly enthusiastic attitude, others stressed the risks of overconfidence, low precision in use, and overlooked treatment options. Besides the obvious physical pain-relieving effects, they stated that effective pain relief could result in a reduced workload and emotional empowerment, both for physicians and staff. Conclusion: Methadone, especially in the form of low-dose add-on to other opioids is widely advocated in Swedish specialized palliative care as a practical and safe method with rapid onset in complex pain situations at the end of life. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate whether the early identification of patients who may benefit from palliative care impacts on the use of palliative, community and acute-based care services. Methods: Between 2014 and 2017, physicians from eight sites were encouraged to systematically identify patients who were likely to die within one year and would were thought to benefit from early palliative care. Patients in the INTEGRATE Intervention Group were 1:1 matched to controls selected from provincial healthcare administrative data using propensity score-matching. The use of palliative care, community-based care services (home care, physician home visit, and outpatient opioid use) and acute care (emergency department, hospitalization) was each evaluated within one year after the date of identification. The hazard ratio (HR) in the Intervention Group was calculated for each outcome. Results: Of the 1,185 patients in the Intervention Group, 951 (80.3%) used palliative care services during follow-up, compared to 739 (62.4%) among 1,185 patients in the Control Group [HR of 1.69 (95% CI 1.56 to 1.82)]. The Intervention Group also had higher proportions of patients who used home care [81.4% vs. 55.2%; HR 2.07 (95% CI 1.89 to 2.27)], had physician home visits [35.5% vs. 23.7%; HR 1.63 (95% CI 1.46 to 1.92)] or had increased outpatient opioid use [64.3% vs. 52.1%); HR 1.43 (95% CI 1.30 to 1.57]. The Intervention Group was also more likely to have a hospitalization that was not primarily focused on palliative care (1.42 (95% CI 1.28 to 1.58)) and an unplanned emergency department visit for non-palliative care purpose (1.47 (95% CI 1.32 to 1.64)). Conclusion: Physicians actively identifying patients who would benefit from palliative care resulted in increased use of palliative and community-based care services, but also increased use of acute care services. [ABSTRACT FROM AUTHOR]