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Background: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care. Aim: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS). Design: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min). Setting/Participants: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance. Results: Fifty patients were randomised to complete paper-electronic (n = 24) and electronic-paper (n = 26) IPOS with median age 69 years (range 24–95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98–1.00), lowest ICCs being observed for symptoms 'Appetite loss' and 'Drowsiness' (ICC 0.95, 95% CI 0.92–0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for 'Communication' (Fmode = 5.9, p = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions. Conclusion: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population. [ABSTRACT FROM AUTHOR]

Background: Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the 'citizen organization'. Objectives: This paper reports on an evaluation of Little Haven's model of care and explores the organization's place as a 'citizen' of the community it services. Design: A co-designed evaluation approach utilizing mixed-method design is used. Methods: Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated. Results: This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as 'over and above', enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community. Conclusion: All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept. Plain language summary: 'Citizen organization': an Australian community-based palliative care service model Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. It aims to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services in equal partnerships between civic organizations, community members, patients and carers, and service providers. We undertook an evaluation of Little Haven's model of care by speaking with current patients, current and past carers, staff, volunteers and stakeholders about their experiences of Little Haven. We found that Little Haven's model contains the essential elements of a palliative care service and provides early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users. They have strong community engagement with a strong background in community activism. We identified that Little Haven's 'being in the community' goes beyond service provision or even sentiment. We observed a symbiotic relationship between the organization and the community it supports in what we have termed the 'citizen organization'. The distinctive characteristic of the citizen organization is its inseparability from the community in which it dwells. [ABSTRACT FROM AUTHOR]

Background: Acute and late toxicities in patients treated with (chemo)radiotherapy for head and neck cancer (HNC) is common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. Aims: Since Dutch performance status scales for the HNC population are lacking, we conducted this study to translate the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and to validate this version. Methods & Procedures: The D‐PSS‐HN was translated into Dutch according to the internationally described cross‐cultural adaptation process. It was administered to HNC patients and together with the Functional Oral Intake Scale completed by a speech and language pathologist at five different time points during the first 5 weeks of (chemo)radiotherapy. Patients were asked each time to complete the Functional Assessment of Cancer Therapy and the Swallowing Quality of Life Questionnaire. Pearson correlation coefficients were used to calculate convergent and discriminant validity and the evolution of D‐PSS‐HN scores was assessed by means of linear mixed models. Outcomes & Results: A total of 35 patients were recruited and > 98% of the clinician‐rated scales were completed. Convergent and discriminant validity were demonstrated, with all correlations rs between 0.467 and 0.819, and between 0.132 and 0.256, respectively. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. Conclusion & Implications: The D‐PSS‐HN is a valid and reliable instrument to assess performance status in patients with HNC treated with (chemo)radiotherapy. It is a useful tool to measure HNC patients' current diet level and functional abilities to perform daily life activities. WHAT THIS PAPER ADDS: What is already known on the subject: Acute and late toxicities in patients treated with (chemo)radiotherapy for HNC are common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. However, Dutch performance status scales for the HNC population are lacking. Therefore, we translated the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and validated this version. What this paper adds to existing knowledge: We translated the PSS‐HN and demonstrated its convergent and discriminant validity. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. What are the potential or actual clinical implications of this work?: The D‐PSS‐HN is a useful tool to measure HNC patients' functional abilities to perform daily life activities. The tool can easily be used in clinical settings: since data collection duration is very short, this facilitates clinical (and research‐related) implementation of the scale. Patients' individual needs could be identified by using the D‐PSS‐HN, resulting in more appropriate approaches and (early) referrals if needed. Interdisciplinary communication could be facilitated. [ABSTRACT FROM AUTHOR]

Objective: High-quality end-of-life care involves addressing patients' physical, psychosocial, cultural and spiritual needs. Although the measurement of the quality of care associated with dying and death is an important component of health care, there is a lack of evidence-based, systematic processes to examine the quality of dying and death of patients in hospital settings. Our purpose was to develop a systematic appraisal framework (QualDeath) for reviewing the quality of dying and death for patients with advanced cancer. The objectives were to: (1) explore the evidence regarding existing tools and processes related to appraisal of end-of-life care; (2) examine existing practices related to appraisal of quality of dying and death in hospital settings; and (3) develop QualDeath with consideration of potential acceptability and feasibility factors. Methods: A co-design multiple methods approach was used. For objective 1, a rapid literature review was undertaken; for objective 2 we carried out semi-structured interviews and focus groups with key stakeholders in four major teaching hospitals; and for objective 3 we interviewed key stakeholders and held workshops with the project team to reach consensus. Results: We developed QualDeath, a framework to assist hospital administrators and clinicians to systematically and retrospectively review the quality of dying and death for patients expected to die from advanced cancer. It offers four levels of potential implementation for hospitals to select from and incorporates medical record review, multidisciplinary meetings, quality of end-of-life care surveys and bereavement interviews with family carers. Conclusions: The QualDeath framework provides hospitals with recommendations to formalise processes to evaluate end-of-life care. Although QualDeath was underpinned by several research methods, further research is needed to rigorously explore its impact and test its feasibility. What is known about the topic? The Australian Commission on Safety and Quality in Health Care explicitly directs Australian hospitals and healthcare services to review the quality of end-of-life care provided against planned goals of care. However, there is a lack of evidence-based, systematic processes to examine the quality of dying and death of cancer patients in hospital settings. What does this paper add? QualDeath provides a framework that enables hospitals to implement a systematic approach to appraising the quality of dying and death for cancer patients. What are the implications for practitioners? QualDeath is underpinned by the principle that hospital clinicians should be evaluating the quality of care provided for every patient who dies. This provides an opportunity for reflecting on and improving the quality of care provided, as well as acknowledging examples of high-quality end-of-life care. [ABSTRACT FROM AUTHOR]

Objectives: Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective. Methods: We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis. Results: Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care – the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals – who spoke of 'growing this plan together'; the delivery of person-centred care – where physicians 'actually listen and you are not treated like a number'; the reality of action plan use in serious illness – while many found plans 'certainly' do help, others described when they were simply 'too ill to do the action plan'; and finally, divergent preferences for discussions about future care – while some patients felt this subject was 'better left alone', caregivers consistently reported their preference was to 'make a plan.' Conclusion: Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential diverging preferences of the patient and caregiver when discussing future care. What is known about the topic? Integrated respiratory and palliative care services for people with advanced lung disease may improve quality of life and decrease acute healthcare utilisation and cost. What does this paper add? This paper adds to our understanding of patients', caregivers' and general practitioners' perspectives of this integrated care model. Participants highly valued this integrated service for providing person-centred care. Participants outlined both the effectiveness and limitations of action plan use in advanced lung disease, and of diverging preferences between patients and caregivers for discussions about future care. What are the implications for practitioners? The integration of disease-orientated care along with the provision of palliative care is highly valued from a consumer perspective. [ABSTRACT FROM AUTHOR]

Background: There is widespread agreement about the importance of spiritual training programs (STPs) for healthcare professionals caring for cancer patients, and that reflecting on one's spirituality is the first step. Health professionals (HPs) working in hospitals must develop this dimension to guarantee the quality of life as well as spiritual and emotional support. In this paper, we propose a possible training format for hospital professionals and assess its implementation. Methods: This is a phase 0-I study that follows the Medical Research Council (MRC) framework. The program was implemented for hospital palliative care specialists. The program included one theory lesson, three spiritual interactions, four pieces of reflective writing, and two individual follow-up sessions for each participant. The evaluation was performed quantitatively according to the MRC framework and qualitatively according to Moore's framework with data triangulation from interviews, reflective writings, and indicators. Results: The program was implemented for palliative care physicians, nurses, psychologists, and bioethicists according to the plan, and the program components were highly appreciated by the participants. The results suggest the feasibility of a training course with some corrections, regarding both the components of the training and organizational issues. The qualitative analysis confirmed a shift in the meaning of the themes we identified. The trainees went from intrapersonal spirituality to interpersonal spirituality (engagement with the other person's spirituality, acknowledging their unique spiritual and cultural worldviews, beliefs, and practices), with colleagues, patients, and people close to them. The training had an impact on Moore's Level 3b. Conclusions: Spiritual training for hospital professionals working in palliative care is feasible. Having time dedicated to spirituality and the ongoing mentorship of spiritual care professionals were suggested as key elements. The next step is increasing awareness of spirituality from our hospital reality and creating a stable competent group (with nurses, chaplains, nuns, counselors, etc.) with the support of the management. [ABSTRACT FROM AUTHOR]

Aims and objectives: This paper investigates the feasibility and the perception of the nurse's role as the palliative care coordinator. Background: Integrated care is a global imperative in all healthcare improvement processes. Due to Andrija Štampar's success in the organisation of public health services, Croatia today has more than hundred years of experience in care integration. The palliative care system has been continuously developing since 2014 as an integrated care model, with nurses as care coordinators. Methods: The study used a mixed methodology based on pragmatic research principles, including an analysis of strategic and policy documents and reports, and thematic analysis of focus group conducted with palliative care coordinators, following COREQ checklist. Results: Although a legal, professional and financial regulation of nurse coordinators has been achieved, a number of implementation challenges remain. These challenges arise as a result of long‐term fragmentation of the health and social care, and can be found in both horizontal and vertical integration of care, that is in the dimensions of functional, clinical, cultural and social integration. Conclusions: Nurses play a central role in care coordination. Coordination and integration promote professionalisation with clear roles and tasks. However, even with the legal, professional and financial implementation of the nurse coordinator model, it has to be further promoted as an equally important job in the healthcare system, with nurses as competent professionals in charge of care coordination. Relevance to clinical practice: Palliative care provides a range of individualised, coordinated services that meet the medical and non‐medical needs of seriously ill patients. Described model of palliative care in Croatia is particularly important because it was developed as an integrated part of health care (and partly social welfare) system, indicating with the nurse's role as palliative care coordinator that coordination is a continuous process that requires a dedicated professional role. [ABSTRACT FROM AUTHOR]

Primary care settings are ideal for initiating advance care planning (ACP) conversations and assessing palliative and supportive care needs. However, time constraints and a lack of confidence to sensitively and efficiently initiate such discussions are noted barriers. The Advance Project implemented a national multicomponent training package to support Australian general practice nurses (GPNs) to work with GPs to initiate ACP and palliative care conversations in their practice. This paper reports on semistructured interviews conducted with 20 GPNs to explore barriers and facilitators to implementing the Advance Project model. Participants identified a range of factors that affected implementation, including lack of time, limited support from colleagues, lack of knowledge about systems and funding processes in general practice and a need for better alignment of the Advance Project resources and practices with general practice information management platforms. Barriers related to professional roles, particularly the lack of clarity and/or limitations in the scope of practice of GPNs, highlighted the importance of defining and supporting the roles that different primary health practice staff could play to support implementation of the model. The findings underline the need for complementary training in the Advance Project model for GPs and practice managers to enable a team-based approach to implementation. Primary care professionals often report barriers to initiating advance care planning (ACP) and palliative care (PC), affecting patients' end-of-life care experiences. This paper provides evidence to suggest that nurses working in general practice can be trained and are willing to initiate ACP and PC. By understanding barriers and facilitators to early implementation of the Advance Project model through a theoretical lens, changes were identified that could lead to successful implementation of ACP/PC assessment tools in general practice settings. [ABSTRACT FROM AUTHOR]

Background: Deaths in the community are increasing. However, community palliative care out-of-hours is variable. We lack detailed understanding of how care is provided out-of-hours and the associated outcomes. Aim: To review systematically the components, outcomes and economic evaluation of community-based ‘out-of-hours’ care for patients near the end of life and their families. Design: Mixed method systematic narrative review. Narrative synthesis, development and application of a typology to categorise out-of-hours provision. Qualitative data were synthesised thematically and integrated at the level of interpretation and reporting. Data sources: Systematic review searching; MEDLINE, EMBASE, PsycINFO, CINAHL from January 1990 to 1st August 2022. Results: About 64 publications from 54 studies were synthesised (from 9259 retrieved). Two main themes were identified: (1) importance of being known to a service and (2) high-quality coordination of care. A typology of out-of-hours service provision was constructed using three overarching dimensions (service times, focus of team delivering the care and type of care delivered) resulting in 15 categories of care. Only nine papers were randomised control trials or controlled cohorts reporting outcomes. Evidence on effectiveness was apparent for providing 24/7 specialist palliative care with both hands-on clinical care and advisory care. Only nine publications reported economic evaluation. Conclusions: The typological framework allows models of out-of-hours care to be systematically defined and compared. We highlight the models of out-of-hours care which are linked with improvement of patient outcomes. There is a need for effectiveness and cost effectiveness studies which define and categorise out-of-hours care to allow thorough evaluation of services. [ABSTRACT FROM AUTHOR]

Background: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. Aim: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. Design: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. Settings/participants: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. Results: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. Conclusion: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care. [ABSTRACT FROM AUTHOR]

Aim The aim of this study was to conduct an integrative review on how nurses prepare families for and support families during withdrawal of life-sustaining treatments in intensive care. Background End-of-life care is widely acknowledged as integral to the practice of intensive care. However, little is known about what happens after the decision to withdraw life-sustaining treatments has been made and how families are prepared for death and the dying process. Design Integrative literature review. Data sources MEDLINE, CINAHL Plus, Psych INFO, PUBMED, Scopus, EMBASE and Web of Knowledge were searched for papers published between 2000-May 2015. Review methods A five stage review process, informed by Whittemore and Knafl's methodology was conducted. All papers were reviewed and quality assessment performed. Data were extracted, organized and analysed. Convergent qualitative thematic synthesis was used. Results From an identified 479 papers, 24 papers were included in this review with a range of research approaches: qualitative ( n = 15); quantitative ( n = 4); mixed methods ( n = 2); case study ( n = 2) and discourse analysis ( n = 1). Thematic analysis revealed the nurses: equipped families for end of life through information provision and communication; managed the withdrawal of life-sustaining treatments to meet family need; and continued care to build memories. Conclusion Greater understanding is needed of the language that can be used with families to describe death and dying in intensive care. Clearer conceptualization of the relationship between the medically focussed withdrawal of life-sustaining treatments and patient/family-centred end-of-life care is required making the nursing contribution at this time more visible. [ABSTRACT FROM AUTHOR]

Background: Residential aged care facilities is one of the most common places to deliver of end of life care. A lack of evidence regarding preferred place for end of life care for residents of aged care facilities impacts on delivery of care and prevents assessment of quality of care. This paper reports the preferences, current status of end of life care and enablers and barriers of care being delivered in line with the wishes of residents of participating aged care facilities. Methods: We collaborated with six equally sized aged care facilities from the Greater Newcastle area, New South Wales, Australia. An audit of the quality of end of life care for residents was conducted by retrospective medical record review (n = 234 deceased patients). A retrospective review of emergency department transfers was conducted to determine the rate of transfer and assign avoidable or not. Qualitative focus group and individual interviews were conducted and analysed for barriers and enablers to end of life care being delivered in accordance with residents' wishes. Results: Most residents (96.7%) wished to remain in their residential aged care facility if their health deteriorated in an expected way. Residents of facilities whose model of care integrated nurse practitioners had the lowest rates of emergency department transfers and timelier symptom management at end of life. Family decision making influenced location of death (either supporting or preventing care in place of patient preference). Conclusion(s): To better provide care in accordance with a person's wishes, aged care facilities need to be supported to enable end of life care insitu through integrated care with relevant palliative care providers, education and communication strategies. Family and community health and death literacy interventions should accompany clinical innovation to ensure delivery of care in accordance with residents' preferences. [ABSTRACT FROM AUTHOR]

Background: There is an increasing demand for mental health support in primary care, especially for young people. To improve mental health support for young people in general practice, the needs of young people must be considered.Aim: To explore the experiences of young people (aged 12-25 years) on receiving mental health care in primary care and identify the needs of young people who present with mental health concerns.Design and Setting: A systematic review and narrative synthesis.Method: This was a systematic review and narrative synthesis. Six databases were searched for literature relating to young people's experiences of receiving mental health care in primary care. Additional handsearching and manual internet searching were conducted. Narrative synthesis was employed.Results: Five papers and a further two reports from manual internet searching were found, resulting in the inclusion of 1823 young people from four different countries (UK, US, Ireland, and Canada) for synthesis. The synthesis generated four themes: the centrality of a trusting relationship; showing empathy and taking concerns seriously; being given time to talk; and barriers to accessing mental health support in primary care.Conclusion: Young people need a trusting relationship to discuss sensitive issues. To enable high-quality and effective mental health consultations with young people and the development of trust, GPs require unhurried consultations and the ability to maintain continuity of care. [ABSTRACT FROM AUTHOR]

Background: Palliative care, a recognised component of care by the World Health Organization is poorly developed in low- and middle-income countries. Mobile phone technology, an effective way to increase access and sustainability of healthcare systems globally, has demonstrated benefits within palliative care service delivery, but is yet to be utilised in Ethiopia. Aim: To co-design, develop and evaluate a mobile phone based remote monitoring system for use by palliative care patients in Ethiopia Design: Two-phase co-design approach comprising multiple methods that is stakeholder interviews, focus groups, user-co-creation activities and healthcare worker prioritisation discussions 2019–2020. Phase-1 interviews (n = 40), Phase-2 focus groups (n = 3) and interviews (n = 10). Setting/Participants: Hospice Ethiopia and Yekatit 12 Medical College Hospital: healthcare workers, palliative care patients, family carers & software-developers. Results: Co-design activities lead to development of the prototype ' Ayzot ' application, which was well received and reported to be easy to use. Patients, and family caregivers saw provision of self-care information and symptom management as a key function of the App and expressed very positive attitudes towards such information being included. Healthcare workers found the App offered service benefits, in terms of time and cost-savings. Conclusion: This paper provides a detailed example of the development and design of a prototype remote monitoring system using mobile phone technology for palliative care use in Ethiopia. Further development and real-world testing are required, to not only understand how it acts within usual care to deliver anticipated benefits but also to explore its effectiveness and provide cost estimates for wider implementation. [ABSTRACT FROM AUTHOR]

Introduction Research in palliative care (PC) is often regarded as challenging due to the vulnerability of the population and other peculiarities. We aim to systematically identify barriers to research in PC in the literature. Methods The electronic databases CINAHL, MEDLINE were searched for papers published in the last 25 years. Citations and then abstracts were screened for inclusion. Original papers were included on first-level analysis. On a second level reviews, reports, and position papers were analyzed. Papers containing a direct patient report were specifically analyzed. Barriers were categorized (ethical considerations, financial and time expenses, study design and methodology, human resources and politics) and results quantified. Results Twenty-one original papers and 65 other papers were included. Five studies involved patients directly, five were systematic reviews, three were study experiences, and seven were surveys or workshop reports. Most papers originated from UK, USA, or Norwegian Universities. Ethics and methods were the most often mentioned categories on both levels. Accrual, attrition, and gatekeeping were frequently named barriers. Complex invasive studies or possible side effects hinder patients' participation, as patients are often willing to participate for altruistic motivations. Discussion Barriers to PC research are ethical concerns and methodological challenges. Possible strategies to overcome methodological barriers include international collaborative efforts to include more patients and improve study designs. Ethical barriers indicate the need for patient involvement in the research development process and tailoring research specifically to the PC population. [ABSTRACT FROM AUTHOR]

Background: Older people with noncancer conditions are less likely to be referred to palliative care services due to the inherent uncertain disease trajectory and a lack of standardised referral criteria. For older adults with noncancer conditions where prognostic estimation is unpredictable, needs-based criteria are likely more suitable. Eligibility criteria for participation in clinical trials on palliative care could inform a needs-based criteria. This review aimed to identify and synthesise eligibility criteria for trials in palliative care to construct a needs-based set of triggers for timely referral to palliative care for older adults severely affected by noncancer conditions. Methods: A systematic narrative review of published trials of palliative care service level interventions for older adults with noncancer conditions. Electronic databases Medline, Embase, CINAHL, PsycINFO, CENTRAL, and ClinicalTrials.gov. were searched from inception to June 2022. We included all types of randomised controlled trials. We selected trials that reported eligibility criteria for palliative care involvement for older adults with noncancer conditions, where > 50% of the population was aged ≥ 65 years. The methodological quality of the included studies was assessed using a revised Cochrane risk-of-bias tool for randomized trials. Descriptive analysis and narrative synthesis provided descriptions of the patterns and appraised the applicability of included trial eligibility criteria to identify patients likely to benefit from receiving palliative care. Results: 27 randomised controlled trials met eligibility out of 9,584 papers. We identified six major domains of trial eligibility criteria in three categories, needs-based, time-based and medical history-based criteria. Needs-based criteria were composed of symptoms, functional status, and quality of life criteria. The major trial eligibility criteria were diagnostic criteria (n = 26, 96%), followed by medical history-based criteria (n = 15, 56%), and physical and psychological symptom criteria (n = 14, 52%). Conclusion: For older adults severely affected by noncancer conditions, decisions about providing palliative care should be based on the present needs related to symptoms, functional status, and quality of life. Further research is needed to examine how the needs-based triggers can be operationalized as referral criteria in clinical settings and develop international consensus on referral criteria for older adults with noncancer conditions. [ABSTRACT FROM AUTHOR]

Background: The communication processes between different stakeholders in outpatient palliative care face challenges when multiprofessional teams want to keep each other updated on patient information. Meanwhile, the software market offers different tools to connect these teams in real-time to improve communication. In the research project ADAPTIVE (Impact of Digital Technologies in Palliative Care), we investigated how information and communication technology affects collaboration and work in multiprofessional teams and what advantages and disadvantages the use of said software might entail. Methods: We conducted 26 semi-structured interviews between August and November 2020 with general practitioners (n = 8), palliative care nurses (n = 17), and a pharmacist (n = 1). They were conducted in a hybrid format, meaning that both face-to-face interviews and telephone interviews were carried out. Subsequently, we analyzed the interviews following the qualitative content analysis according to Kuckartz. Results: Information and communication software has the potential to enable faster communication and delegation of tasks and to simplify communication and task management between providers. Furthermore, it creates the opportunity to decrease unnecessary supervision of duties and responsibilities for physicians in multiprofessional teams. Therefore, it allows facilitating the collaboration between multiprofessional teams that work independently of each other but care for the same patients. All providers have the same knowledge about their patients without time-consuming coordination such as phone calls or search processes in paper documentation. On the other hand, mishandling, poor Internet connection, and unfamiliarity with various features can diminish these benefits. Conclusion: Even though the use of such software offers many advantages, these advantages only reveal themselves if the software is used as it was intended by the developers. Misuse and unawareness of the individual functions can lead to the full potential not being realized. The software developers frequently offer specialized training, and the multiprofessional teams should utilize that to improve team communication, facilitate tasks, and allow physicians to delegate tasks. Trial registration: The study is registered in the German Clinical Trials Register (DRKS): https://www.drks.de/drks%5fweb/navigate.do?navigationId=trial.HTML&TRIAL%5fID=DRKS00021603 (Registration number: DRKS00021603; date of first registration: 02/07/2020). [ABSTRACT FROM AUTHOR]

Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar.Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support.Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention.Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts. [ABSTRACT FROM AUTHOR]

Introduction: People living with advanced cancer want to continue participating in their valued occupations amid cancer progression. However, increasing dependence and bodily deterioration challenge a person's ability to do so, thus requiring adaptation to how they engage in their occupations. Theoretical frameworks on the process of occupational adaptation often do not address the implications of progressive functional decline. Methods: A longitudinal phenomenological design was used to understand the lived experience of occupational engagement for working‐aged adults living with advanced cancer. A semi‐structured interview series explored participants' experience of occupational engagement and how this changed over time. Data were analysed thematically and mapped against the Model of Human Occupation (MOHO). Findings: Eight adults (40–64 years old) participated in 33 interviews over 19 months. Three themes were constructed from the data: ongoing adaptation through doing, the significance of volition in adaptation, and everyday life is contingent on my environment. Study findings demonstrate that the process of adaptation occurs through occupational engagement, is motivated by volition, and is affected by the environment. Volition and the environment play a more central role in occupational adaptation than occupational competency for the advanced cancer cohort. Conclusion: Study findings further MOHO's theoretical conceptualisation of occupational adaptation by identifying the centrality of volition and the environment in the process of adaptation. For people living with advanced cancer, disease progression results in unremitting functional decline, thus rendering competency an unstable and untenable construct. Rather, this paper argues that occupational adaptation is facilitated by volition (i.e., the motivation behind the doing) and the environment, thus fostering a sense of identity and meaning at the end of life. Occupational therapists' awareness of the significance of volition and the environment can thus foster continued occupational engagement and meaning at the end of life for people living with advanced cancer. [ABSTRACT FROM AUTHOR]

Background: In ageing Western societies, many older persons live with and die from cancer. Despite that present-day healthcare aims to be patient-centered, scientific literature has little knowledge to offer about how cancer and its treatment impact older persons' various outlooks on life and underlying life values. Therefore, the aims of this paper are to: 1) describe outlooks on life and life values of older people (≥ 70) living with incurable cancer; 2) elicit how healthcare professionals react and respond to these. Methods: Semi-structured qualitative interviews with 12 older persons with advanced cancer and two group interviews with healthcare professionals were held and followed by an analysis with a grounded theory approach. Results: Several themes and subthemes emerged from the patient interview study: a) handling incurable cancer (the anticipatory outlook on "a reduced life", hope and, coping with an unpredictable disease) b) being supported by others ("being there", leaving a legacy, and having reliable healthcare professionals) and; c) making end-of-life choices (anticipatory fears, and place of death). The group interviews explained how healthcare professionals respond to the abovementioned themes in palliative care practice. Some barriers for (open) communication were expressed too by the latter, e.g., lack of continuity of care and advance care planning, and patients' humble attitudes. Conclusions: Older adults living with incurable cancer showed particular outlooks on life and life values regarding advanced cancer and the accompanying last phase of life. This paper could support healthcare professionals and patients in jointly exploring and formulating these outlooks and values in the light of treatment plans. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. Methods: Semi‐structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. Results: Twenty‐four patients and eight HCPs participated. Two overarching themes and five sub‐themes emerged: Theme one—referral process: timing and triggers, responsibility. Theme two—engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. Conclusion: There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process. [ABSTRACT FROM AUTHOR]

To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme. The wider evaluation used a formative evaluation methodology. This paper draws on in-depth interviews with a range of stakeholders ( n = 17), in-depth interviews with bereaved carers ( n = 6) and an analysis of documentation. Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans. Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care. The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers. [ABSTRACT FROM AUTHOR]

Place and health are intricately bound. COVID has amplified system burdens and health risks within the housing care continuum, in which older adults with chronic illnesses are disproportionately represented. The paper identifies the health experiences of older adults with severe conditions living in and moving through temporary avoidance hotels during the COVID-19 pandemic. An interpretive descriptive approach was taken with qualitative chart data and provider observation to represent the experiences of 14 older avoidance hotel residents living with serious illnesses. Through provider documentation, we illustrate trends pre-pandemic, in the first nine months of the pandemic, and the second nine months. Such trends include strengths and opportunities such as the health-affirming nature of avoidance hotels, their potential in generating continuity of care and permanent housing, and synergy between harm reduction approaches and palliative care. Challenges were also identified in catering to the diverse medical, behavioral, and psychosocial-spiritual needs of older and seriously ill residents and the consequences of geographic dispersion on health care, health behaviors, and informal care networks. Through these strengths and challenges, avoidance hotels present essential lessons in considering future housing and healthcare intervention and implementation that addresses the needs of older seriously ill people facing homelessness and housing precarity. [ABSTRACT FROM AUTHOR]

Background: Journeying with patients throughout their cancer trajectory and caring for them at the end of life can lead to emotional and moral distress in oncologists, negatively impacting their personal and professional identities. A better understanding of how transitions in care goals affect oncologists can shed light on the challenges faced and the support required. This study explored the impact of care transitions on oncologists' professional identity formation (PIF). Methods: From September to December 2023, semi-structured interviews were conducted with oncologists in a palliative care center in Singapore. The Ring Theory of Personhood (RToP) was used as a framework to capture the effects of experiences with patients transitioning from curative to palliative care on the oncologists' sense of self and identity. Data were analyzed using both inductive and deductive qualitative analysis. Results: Participants included six female and six male physicians, aged 30 to 53 years (mean 38 years), with an average of 9.75 years of experience as oncologists. The main domains identified were 1) challenges faced in transitioning patients to palliative care, 2) the impact of dealing with dying patients on oncologists, and 3) coping mechanisms. Conclusion: Oncologists experience self-doubt and moral distress as they manage transitions in care. The PIF of oncologists can be supported through reflection and introspection, peer support, and interventions to promote self-care — ultimately enabling them to make meaning of their experiences, renew family ties, and reaffirm their commitment to the profession. [ABSTRACT FROM AUTHOR]

Introduction: Chronic Obstructive Pulmonary Disease (COPD) profoundly affects physical, psychological, and social aspects of life, yet these issues often remain unaddressed. Patient-Reported Outcomes Measures (PROM) have the potential to address these issues by promoting person-centered communication. However, their impact in COPD practice remains uncertain. This study aimed to investigate how patients with COPD perceive the usefulness of a new holistic PROM for general palliative care (PRO-Pall) before and during outpatient consultations. Methods: Semi-structured telephone interviews were conducted with patients diagnosed with moderate to very severe COPD, 2-5 days after consultation at a respiratory outpatient clinic in Denmark. Interviews were transcribed verbatim and analyzed inductively using qualitative content analysis. Results: Nine patients (five males; mean age: 66 years) participated in the study with four themes emerging: (1) Unlocking thoughts: Completing PRO-Pall stimulated patients’ self-reflection, which revealed previously overlooked COPD-related issues, particularly psychosocial challenges. (2) Unmasking concerns: Patients felt encouraged to be honest, rather than concealing their concerns. (3) Breaking the ice: PRO-Pall responses enabled direct questioning by healthcare professionals during consultations, initiating discussions on patients’ sensitive yet vital COPD-related matters. (4) Deepening the dialogue: Healthcare professionals’ targeted and attentive approach fostered more holistic and meaningful discussions, providing most patients with a deeper understanding of psychosocial issues affecting their well-being. Conclusion: Completing PRO-Pall prior to outpatient consultations prompted most patients with COPD to unveil previously unacknowledged psychosocial challenges. During consultations, addressing these challenges initiated open discussions on individual concerns, enhancing most patients’ understanding of the multifaceted burden of COPD. [ABSTRACT FROM AUTHOR]

Background: Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. Methods: We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. Results: Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals' lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks' response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. Conclusions: Health care professionals aim to increase patients' time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term. [ABSTRACT FROM AUTHOR]

Background: Deprescribing has been defined as the planned process of reducing or stopping medications that may no longer be beneficial or are causing harm, with the goal of reducing medication burden while improving patient quality of life. At present, little is known about the specific challenges of decision-making to support deprescribing for patients who are accessing palliative care. By exploring the perspectives of healthcare professionals, this qualitative study aimed to address this gap, and explore the challenges of, and potential solutions to, making decisions about deprescribing in a palliative care context. Methods: Semi-structured interviews were conducted with healthcare professionals in-person or via video call, between August 2022 – January 2023. Perspectives on approaches to deprescribing in palliative care; when and how they might deprescribe; and the role of carers and family members within this process were discussed. Interviews were audio-recorded and transcribed verbatim. Reflexive thematic analysis enabled the development of themes. QSR NVivo (Version 12) facilitated data management. Ethical approval was obtained from the NHS Health Research Authority (ref 305394). Results: Twenty healthcare professionals were interviewed, including: medical consultants, nurses, specialist pharmacists, and general practitioners (GPs). Participants described the importance of deprescribing decision-making, and that it should be a considered, proactive, and planned process. Three themes were developed from the data, which centred on: (1) professional attitudes, competency and responsibility towards deprescribing; (2) changing the culture of deprescribing; and (3) involving the patient and family/caregivers in deprescribing decision-making. Conclusions: This study sought to explore the perspectives of healthcare professionals with responsibility for making deprescribing decisions with people accessing palliative care services. A range of healthcare professionals identified the importance of supporting decision-making in deprescribing, so it becomes a proactive process within a patient's care journey, rather than a reactive consequence. Future work should explore how healthcare professionals, patients and their family can be supported in the shared decision-making processes of deprescribing. Trial registration: Ethical approval was obtained from the NHS Health Research Authority (ref 305394). [ABSTRACT FROM AUTHOR]

Background: Most people diagnosed with dementia live and die in community settings. This study aimed to: (i) describe the palliative care needs of patients with dementia at commencement of community palliative care; (ii) compare palliative care needs between patients with dementia and those with lung cancer and cardiovascular disease (CVD). Methods: This is a population-based descriptive study that involved 8,727, 7,539 and 25,279 patients who accessed community palliative care across Australia principally because of dementia, CVD and lung cancer. Patients' functional abilities, symptom burden and clinical condition were assessed at commencement of community alliative care using five validated instruments: Resource Utilisation Groups—Activities of Daily Living, Australia-modified Karnofsky Performance Status, Symptoms Assessment Scale, Palliative Care Problem Severity Score and Palliative Care Phase. We fitted ordinal logistic regression models to examine the differences in these assessments for dementia versus CVD and lung cancer, respectively. Results: Overall, patients with dementia generally had low levels of distress from symptoms but poor functional problems. Compared to the other two diagnostic groups, palliative care for dementia was often initiated later and with shorter contacts. Also, patients with dementia presented with poorer functional performance (adjusted OR (aOR) = 4.02, Confidence Interval (CI): 3.68 – 4.38 for dementia vs CVD; aOR = 17.59, CI: 15.92 – 19.44 for dementia vs lung cancer) and dependency (aOR = 5.68, CI: 5.28 – 6.12 for dementia vs CVD; aOR = 24.97, CI: 22.77 – 27.39 for dementia vs lung cancer), but experienced lower levels of distress and problem severity for the majority of symptoms. Conclusion: Community palliative care is often an ideal care option for many patients, particularly for those with dementia. We call for expansion of the palliative care workforce and options for home care support to optimize accessibility of community palliative care for dementia. [ABSTRACT FROM AUTHOR]

Background: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59–4.97, p = 0.33; large – aOR 0.65, 95% CI 0.18–2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes. [ABSTRACT FROM AUTHOR]

Background: Individuals experiencing socioeconomic inequity have worse health outcomes and face barriers to palliative and end-of-life care. There is a need to develop palliative care programs tailored to this underserved population. Objectives: To understand the characteristics and symptom profiles of a group of urban patients experiencing socioeconomic inequity and receiving palliative care. Design: Descriptive exploratory analysis of a patient dataset. The patient dataset was generated through a pilot research study with patients experiencing socioeconomic inequity and life-limiting illness who received a community-based palliative care intervention. Methods: The intervention took place over 1 year in the Palliative Care Outreach and Advocacy Team, a community-based urban palliative care clinic in Edmonton, Alberta, Canada, serving persons experiencing socioeconomic inequity. Participants had to be at least 18 years of age, be able to communicate in English, require palliative care for a life-limiting illness, and be able to consent to inclusion in the study. Results: Twenty-five participants were enrolled. Participants predominantly identified as male and Indigenous, experienced poverty and housing instability, and had metastatic cancer. Our participants rated their pain, shortness of breath, and anxiety as more severe than the broader community-based palliative care population in the same city. Most patients died in inpatient hospices (73%). Conclusion: Our analysis provides an in-depth picture of an understudied, underserved population requiring palliative care. Given the higher symptom severity experienced by participants, our analysis highlights the importance of person-centered palliative care. We suggest that socioeconomic inequity should be considered in patients with life-limiting illnesses. Further research is needed to explore palliative care delivery to those facing socioeconomic inequity. [ABSTRACT FROM AUTHOR]

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger–Davidhizar–Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved. [ABSTRACT FROM AUTHOR]

The integration of assisted dying into end-of-life care is raising reflections on bereavement. Patients and families may be faced with a choice between this option and natural death assisted by palliative care; a choice that may affect grief. Therefore, this study describes and compares grief experiences of individuals who have lost a loved one by medical assistance in dying or natural death with palliative care. A mixed design was used. Sixty bereaved individuals completed two grief questionnaires. The qualitative component consisted of 16 individual semi-structured interviews. We found no statistically significant differences between medically assisted and natural deaths, and scores did not suggest grief complications. Qualitative results are nuanced: positive and negative imprints may influence grief in both contexts. Hastened and natural deaths are death circumstances that seem to generally help ease mourning. However, they can still, in interaction with other risk factors, produce difficult experiences for some family caregivers. [ABSTRACT FROM AUTHOR]

Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practice. To further implement the ICP, it is important to identify how parents and healthcare professionals use the ICP and which obstacles or benefits are experienced. Methods: This mixed-method study used qualitative interviews and quantitative questionnaires in (bereaved) parents and healthcare professionals with experience with the ICP. Results: Parents and healthcare professionals used the ICP to establish a joint plan for care and treatment of the child to coordinate care and to achieve child- and family-centered care. This includes both obstacles that complicate achieving care goals and benefits that make it easier. Furthermore, responsibilities for the ICP remained unclear, and there was no set point in the illness trajectory for drawing up the ICP. Conclusions: Parents and healthcare professionals use the ICP as intended. However, uncertainties regarding timing, roles and responsibilities prevent optimal use of the ICP. Agreements on timing and responsibilities are needed for further ICP implementation in daily pediatric palliative care practice. [ABSTRACT FROM AUTHOR]

Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. [ABSTRACT FROM AUTHOR]

Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making. [ABSTRACT FROM AUTHOR]

This paper reports finding from a nested qualitative study designed to elicit the views and perceptions of those who participated in a randomised controlled feasibility trial testing a non-pharmacological intervention, Respiratory Distress Symptom Intervention (RDSI), for the management of the breathlessness-cough-fatigue symptom cluster in lung cancer. Semi-structured interviews were conducted with 11 lung cancer patients, three caregivers and seven researchers involved in recruitment, consent, RDSI training and delivery and participant follow-up. Thematic analysis identified key considerations including: the importance of informed consent emphasising commitment to completion of paperwork and raising awareness of potential sensitivities relating to content of questionnaires; ensuring screening for the presence of symptoms reflects the language used by patients; appreciation of the commitment required from participants to learn intervention techniques and embed them as part of everyday life; conduct of interviews with patients who decline to participate; and conduct of serial interviews with those receiving RDSI to further inform its routine implementation into clinical practice. This study will inform the development of a fully powered follow-on trial testing the hypothesis that RDSI plus usual care is superior to usual care alone in the effective management of this symptom cluster in lung cancer. [ABSTRACT FROM AUTHOR]

Aim: To describe nurses' experiences of ethical challenges in relation to thirst in terminally ill patients in specialist palliative care units. Research design: A qualitative, reflexive thematic design with an inductive analysis was used. Participants and research context: Eighteen qualitative interviews with nurses working in six different specialist palliative care units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results: This study identified four themes that reflect ethical challenges experienced by nurses in the palliative care regarding thirst: Harmful infusions interfere with peaceful dying; conflict between tradition and personal experience; What is the right intervention to quench thirst? and; Lack of standard procedures, competence and interest among team members. Conclusion: Palliative care nurses experience a number ethical challenges in relation to thirst in dying patients. The main challenge is the provision of fluids to dying patients via artificial infusions, which nurses struggle with, as they do not want to interfere with a peaceful dying process. [ABSTRACT FROM AUTHOR]

Background: People with diabetes mellitus frequently have other comorbidities and involve greater use of primary and hospital care services. The aim of this study was to describe the comorbidities and use of primary and hospital care services of people with diabetes according to their risk level by adjusted morbidity groups (AMG) and to analyse the factors associated with the utilisation of these services. Methods: Cross-sectional study. People with diabetes were identified within the population of patients with chronic conditions of an urban health care centre by the AMG stratification tool integrated into the primary health care electronic clinical record of the Community of Madrid. Sociodemographic, functional, clinical characteristics and annual health care services utilisation variables were collected. Univariate, bivariate and Poisson regression analyses were performed. Results: A total of 1,063 people with diabetes were identified, representing 10.8% of patients with chronic conditions within the health centre. A total of 51.4% were female, the mean age was 70 years, 94.4% had multimorbidity. According to their risk level, 17.8% were high-risk, 40.6% were medium-risk and 41.6% were low-risk. The most prevalent comorbidities were hypertension (70%), dyslipidaemia (67%) and obesity (32.4%). Almost 50% were polymedicated. Regarding health services utilisation, 94% were users of primary care, and 59.3% were users of hospital care. Among the main factors associated with the utilisation of both primary and hospital care services were AMG risk level and complexity index. In primary care, utilisation was also associated with the need for primary caregivers, palliative care and comorbidities such as chronic heart failure and polymedication, while in hospital care, utilisation was also associated with comorbidities such as cancer, chronic obstructive pulmonary disease or depression. Conclusions: People with diabetes were older, with important needs for care, many associated comorbidities and polypharmacy that increased in parallel with the patient's risk level and complexity. The utilisation of primary and hospital care services was very high, being more frequent in primary care. Health services utilization were principally associated with functional factors related to the need of care and with clinical factors such as AMG medium and high-risk level, more complexity index, some serious comorbidities and polymedication. [ABSTRACT FROM AUTHOR]

Background: The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People's culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient's nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses' experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care. Methods: The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis. Results: The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture's impact and influence on the nurse's mindset and approach, consisting of seven subcategories that highlight the nurse's experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person's culture, to meet diverse cultural needs and wishes. Conclusion: Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity. [ABSTRACT FROM AUTHOR]

Background: Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed. Aim: To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness. Design: A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis. Setting/participants: Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness. Results: Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations). Conclusions: Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research. [ABSTRACT FROM AUTHOR]

Background: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. Aim: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. Design: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. Setting/participants: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. Results: Four generated themes included: 1. ' Why haven't you read what's wrong with me? '; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having ' a say in matters ': control and responsibility; 4. Enabling patient and carer control of their records: ' custodianship is key '. Conclusions: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems. [ABSTRACT FROM AUTHOR]

Background: In palliative care, the Utrecht Symptom Diary – 4 Dimensional (USD-4D), a Dutch-adapted and validated patient-reported outcome measure, supports multidimensional symptom management through identification and monitoring of, as well as dialogue on symptoms and needs. For the USD-4D to optimally support patients' autonomy, it is essential to know what patients need to use it. Objective: This study aims to identify what patients need when using the USD-4D in clinical palliative care. Design: A generic qualitative design with primary and secondary analyses of semistructured interviews. Methods: Patients ⩾18 years with a life-limiting illness were purposefully recruited within hospice and home care settings if they were in their last year of life as identified by the surprise question. Patients had to be aware of their life-threatening condition. Patients were selected in two tranches. In the first tranche, patients had to have completed the USD-4D at least once. The second tranche consisted of patients who were not familiar with the USD-4D in clinical practice and were interviewed in a previous study on the content validity of the USD-4D. The interviews were transcribed verbatim and were subjected to thematic analysis. Results: Twenty-five patients were included (14 men, ages 44–87). Patients' needs when using the USD-4D were summarized in three themes: (1) feeling invited, (2) being aware of the purpose and function of the USD-4D, and (3) experiencing a personal and nonjudgmental approach. Conclusion: For patients to optimally benefit from the USD-4D as a supportive measure of their autonomy in clinical palliative care, it is essential that they feel invited to use it. Healthcare providers are tasked with setting the right preconditions for patients to want and to be able to use the USD-4D. For patients, this means healthcare providers should always be attuned to their personal preferences when communicating the purpose and function of the USD-4D and when they enter into dialogue with them. [ABSTRACT FROM AUTHOR]

Background: Older adults experiencing homelessness (OAEH) age quickly and die earlier than their housed counterparts. Illness-related decisions are best guided by patients' values, but healthcare and homelessness service providers need support in facilitating these discussions. The Serious Illness Conversation Guide (SICG) is a communication tool to guide discussions but has not yet been adapted for OAEH. Methods: We aimed to adapt the SICG for use with OAEH by nurses, social workers, and other homelessness service providers. We conducted semi-structured interviews with homelessness service providers and cognitive interviews with OAEH using the SICG. Service providers included nurses, social workers, or others working in homeless settings. OAEH were at least 50 years old and diagnosed with a serious illness. Interviews were conducted and audio recorded in shelters, transitional housing, a hospital, public spaces, and over Zoom. The research team reviewed transcripts, identifying common themes across transcripts and applying analytic notetaking. We summarized transcripts from each participant group, applying rapid qualitative analysis. For OAEH, data that referenced proposed adaptations or feedback about the SICG tool were grouped into two domains: "SICG interpretation" and "SICG feedback". For providers, we used domains from the Toolkit of Adaptation Approaches: "collaborative working", "team", "endorsement", "materials", "messages", and "delivery". Summaries were grouped into matrices to help visualize themes to inform adaptations. The adapted guide was then reviewed by expert palliative care clinicians for further refinement. Results: The final sample included 11 OAEH (45% Black, 61 ± 7 years old) and 10 providers (80% White, 8.9 ± years practice). Adaptation themes included changing words and phrases to (1) increase transparency about the purpose of the conversation, (2) promote OAEH autonomy and empowerment, (3) align with nurses' and social workers' scope of practice regarding facilitating diagnostic and prognostic awareness, and (4) be sensitive to the realities of fragmented healthcare. Responses also revealed training and implementation considerations. Conclusions: The adapted SICG is a promising clinical tool to aid in the delivery of serious illness conversations with OAEH. Future research should use this updated guide for implementation planning. Additional adaptations may be dependent on specific settings where the SICG will be delivered. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. Setting/participants: Children 5–⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice. [ABSTRACT FROM AUTHOR]

Background: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce. Aim: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program. Design: Grounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis. Setting: A total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker. Results: Several organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange. Conclusions: Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals. [ABSTRACT FROM AUTHOR]

The study aimed to explore experiences of encounters with health care professionals among patients receiving palliative cancer care in specialist palliative care inpatient units. A qualitative explorative study design was conducted in a specialist palliative care inpatient setting. Data collection was implemented using semi-structured individual interviews (20 palliative care cancer patients) and analysed with inductive content analysis. Palliative care patients experienced both meaningful and disrespectful encounters with healthcare professionals. The meaningful encounters encompassed authentic and supportive experiences, while the disrespectful encounters included indifferent and inadequate experiences. Caring for a patient receiving palliative care requires care beyond tending to a patient's physical needs. Patients should be encountered holistically and as equal human beings without highlighting their roles as patients. The healthcare professionals and the organisations should also acknowledge the importance of time and effort spent for encounters and conversations with the patients instead of concentrating resources mainly on physical care. [ABSTRACT FROM AUTHOR]

Demographic changes, the evolvement of modern medicine and new treatments for severe diseases, increase the need for palliative care services. Palliative care includes all patients with life-limiting conditions, irrespective of diagnosis. In Norway, palliative care rests on a decentralised model where patient care can be delivered close to the patient's home, and the Norwegian guideline for palliative care describes a model of care resting on extensive collaboration. Previous research suggests that this guideline is not well implemented among general practitioners (GPs). In this study, we aim to investigate barriers to GPs' participation in palliative care and implementation of the guideline. We interviewed 25 GPs in four focus groups guided by a semi-structured interview guide. The interviews were recorded and transcribed verbatim. Data were analysed qualitatively with reflexive thematic analysis. We identified four main themes as barriers to GPs' participation in palliative care and to implementation of the guideline: (1) different established local cultures and practices of palliative care, (2) discontinuity of the GP–patient relationship, (3) unclear clinical handover and information gaps and (4) a mismatch between the guideline and everyday general practice. Significant structural and individual barriers to GPs' participation in palliative care exist, which hamper the implementation of the guideline. GPs should be involved as stakeholders when guidelines involving them are created. Introduction of new professionals in primary care needs to be actively managed to avoid inappropriate collaborative practices. Continuity of the GP–patient relationship must be maintained throughout severe illness and at end-of-life. According to the Norwegian guideline for palliative care, the GP should have a central position in providing primary palliative care. Recent research and public reports suggest that not all GPs have such a central role or adhere to the guidelines. This study highlights individual and structural barriers that could be addressed to increase GPs' participation in palliative care and aid the implementation of the guidelines for palliative care. [ABSTRACT FROM AUTHOR]

Background: Palliative care schemes, which include pain management, symptom control, psychosocial support and rehabilitation, aim to boost patients' quality of life, ease the burden and anxiety of informal caregivers, and ultimately provide a comprehensive approach to enhance well-being during this challenging and sensitive period. This study aims to evaluate the impact of a comprehensive rehabilitation palliative care program on the quality of life of patients with terminal cancer and their informal caregivers. Methods: This quasi-experimental study, conducted from August 2023 to January 2024 at outpatient clinics affiliated with the Oncology Center at Mansoura University, Egypt, focused on cancer patients and their caregivers in the palliative care department. Employing pre- and post-test phases, data were gathered using a questionnaire, EORTC QLQ C30, Hospital Anxiety and Depression Scale, Short Form Health Survey, Caregiver Burden Inventory, and Beck Anxiety Inventory. The investigation evaluated a 16-week rehabilitation program comprising exercise, psychoeducation, individual counselling, and spiritual support. Exercises, led by a physiotherapist, targeted fatigue and stress through tailored aerobic and resistance training. Psychoeducation sessions aimed to bolster coping abilities, covering fatigue management and nutrition. Trained counsellors addressed spiritual and existential concerns. Personal advisory sessions were available for individual support. Caregivers received education on rehabilitation and palliative care protocols, ensuring comprehensive patient care. Results: The mean age for cancer patients was 65.79 ± 13.85. In contrast, the mean age for primary carers was 42.05 ± 11.15. The QOL for cancer patients during the pre-test phase was 77.8 ± 7.16 and rose to 87.34 ± 14.56 during the post-test phase. Additionally, the total anxiety level of patients before the rehabilitation palliative care program was conducted was 15.45 ± 3.05 compared to 6.12 ± 3.21 after the post test phase. Furthermore, the total depression levels of the patients during the pre-test phase were 20.89 ± 9.21. However, after implementing the rehabilitation palliative care program, it decreased to 15.5 ± 6.86. In regards to the total quality of life of informal caregivers, it was measured at 67.28 ± 32.09 before conducting the program. Nevertheless, it increased to 25.95 ± 40.29 after conducting it. Additionally, the total Caregiver Burden Inventory before implementing the program was 37.45 ± 25.7, and it decreased to 29.36 ± 16.4 after conducting it. Additionally, the total score on the Beck Anxiety Inventory decreased from 45.7 ± 4.3 during the initial testing phase to 17.35 ± 23.67. Conclusion: The program for rehabilitation palliative care successfully achieved its goals by enhancing the overall quality of life for cancer patients and their caregivers. Additionally, it reduced the anxiety and depression levels among the patients, as well as the anxiety and caregiver burden among the caregivers. Continue research into the effectiveness of rehabilitation palliative care programs to identify best practices, improve existing programs, and expand access to these services. [ABSTRACT FROM AUTHOR]

Background: Emergency medicine (EM) physicians routinely care for patients with serious life-limiting illnesses. Educating EM residents to have general skills and competencies in palliative medicine is a global priority. The purpose of this study was to describe the current status of palliative and end-of-life education in EM residency programs in the United Arab Emirates (UAE) and to identify barriers and opportunities to inculcating palliative care (PC) instruction into EM training in a non-Western setting. Methods: Using the American College of Emergency Medicine's milestones for Hospice and Palliative Medicine for Emergency Medicine as a question guide, semi-structured interviews were conducted with program directors of all 7 EM residency programs in the UAE from January through July 2023. Qualitative content analysis was conducted to identify recurring themes. Results: All program directors agreed that PC knowledge and skills are essential components of training for EM residents but have had variable success in implementing a structured PC curriculum. Six themes emerged, namely the educational curriculum, PC policies and practices, comprehensive PC services, cultural and religious barriers to PC, EM scope of practice, and supporting residents after patient death. Conclusion: UAE national EM residency curriculum development is evolving with an emphasis on developing a structured PC curriculum. As EM residencies implement policies and programs to improve care for patients and families dealing with serious illness, future studies are needed to assess the impact of these initiatives on patient quality of life and physician well-being. [ABSTRACT FROM AUTHOR]