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BACKGROUND: Legacy-how one hopes to be remembered after death-is an unexplored and important dimension of decision-making for people facing serious illness. OBJECTIVES: We conducted a scoping review to answer the following research questions: (1) How do people making treatment choices conceive of legacy? and (2) What treatment choices do people make with legacy in mind? ELIGIBILITY CRITERIA: Participants included people facing serious illness who discussed how they wanted to be remembered after their own death, or how they hoped to impact others, as they made treatment choices. Studies in English published between 1990 and 2022 were included. SOURCES OF EVIDENCE: We conducted searches in electronic databases including Medline/PubMed, CINAHL, PsycInfo, SocialWork, AnthropologyPlus, Web of Science, ProQuest and EMBASE databases. DATA SYNTHESIS: We used an electronic screening tool to screen abstracts and review full-text articles suitable for inclusion. We analysed included articles using Atlas.ti. We constructed tables and narratively synthesised the findings. RESULTS: We identified three major intersecting legacy goals that influence choices people facing serious illness make about their treatment and health behaviours, and the types of choices people make with legacy in mind. The three legacy goals are: remembrance of the individual self, remembrance of the social self and impact on others well-being. CONCLUSIONS: We identify the importance of legacy to patient treatment choices. Understanding for whom this construct is important, what types of legacy goals people hold and how those goals impact treatment choices is necessary to provide patient-centred whole-person care to people facing serious illness.

Introduction: Nurses play an essential role in providing palliative care to improve the quality of life of people with chronic diseases. The Willingness of nurses to engage in this cares is a necessary issue. Therefore, the evaluation of their willingness requires the use of valid, reliable, and suitable tools in the health system of Iran. This study was conducted to translate and validate the psychometric properties of the Persian version of the nurses' willingness to engage in the palliative care scale. Methods: This methodological study was conducted in 2023. 440 nurses were included using the convenience sampling in Baqiyatallah Hospital in Tehran. The translation was done using the forward–backward method. Face validity was done with a cognitive interview with 15 clinical nurses. Content validity was done using the opinions of 15 palliative expert nurses, and construct validity was done using exploratory factor analysis (n = 240) and confirmatory factor analysis (n = 200). The reliability was done using internal consistency and assessment of stability. The data were analyzed using SPSS v.25 and LISREL v.8.8. Results: In the face validity assessment, the items did not change. Brief changes were made in items 8 and 18, in the content validity assessment. In the exploratory factor analysis, 4 factors same as the original version were extracted with a cumulative variance of 59.52%. The results of confirmatory factor analysis showed that the 4-factor model was fit (RMSEA = 0.062, CFI = 0.97, NFI = 0.93, IFI = 0.97, GFI = 0.88). The internal consistency using Cronbach's alpha was 0.9 also the stability was 0.79. Conclusion: The Persian version of nurses' willingness to engage in palliative care scale has sufficient validity and reliability for nurses in the Iranian population. Therefore, this tool can be used to measure nurses' willingness to engage in the palliative care and identify effective strategies. This tool can be used in clinical trials and research in order to improve the ability of nurses in palliative care in Iranian society. [ABSTRACT FROM AUTHOR]

Introduction: Palliative and End of Life care (PEoLC) in the United Kingdom (UK) is increasingly being reported as inadequate. This is occurring amidst a wider backdrop of health and social care systems facing unprecedented pressure, particularly as they recover from the long-term impact of the COVID-19 pandemic. This study aimed to explore the barriers to PEoLC faced by those providing and receiving care in South-West England (UK). This region of the UK brings its own set of unique challenges due to its rural and coastal location, an aging population, and a historical lack of research. Methods: An exploratory study was conducted which involved patients, families, and professionals who were providing and receiving PEoLC. A total of 13 qualitative focus groups were held with a total of 63 participants; 45 were health and care professionals and 18 were people toward the end of their life, family/carers and people who were bereaved. Results: A range of barriers were identified for those providing and receiving PEoLC services. These were a lack of specialist palliative and EoL care resources (particularly in out-of-hours care); poor communication, collaboration and co-ordination across providers; inequalities in the access and provision of care; the impact of the COVID-19 pandemic; and a reluctance to have conversations about death and dying. Conclusion: This study brings together the voices of patients, family, and professionals from different settings in a geographical area of the UK. Understanding their experiences and perceived barriers to care is key to being able to develop and transform care. Ultimately, there is a need for a collaborative and co-ordinated approach across both practice and research, working toward what is important to those providing, and most importantly, those receiving care at the end of their lives. [ABSTRACT FROM AUTHOR]

Background: Seriously ill older adults are admitted for post-acute care in skilled nursing facilities (SNFs) for curative, rehabilitative treatments, yet experience high rates of re-hospitalization, and death. The primary palliative care in post-acute care (PPC-PAC) intervention is an evidence-based approach designed to help people with serious illness align treatment plans with goals of care, optimize quality of life, and improve satisfaction with their care. Objectives: To conduct a preliminary study and evaluate the feasibility of implementing the PPC-PAC intervention in the post-acute care SNF setting. Design: Two-group, multisite feasibility pilot pragmatic clinical trial with a non-equivalent design. Measurements: Primary outcome measures—eligibility, enrollment, and data collection rates; consultation satisfaction; and fidelity. Effectiveness outcome measure—quality of life using the Palliative Outcomes Scale version 2. Results: Close to 70% of those who were eligible and approached by the study team (45/65) enrolled in the trial throughout 12 SNFs in the Northeast and Mid-Atlantic United States. Thirty-five were enrolled from intervention sites; 10 were enrolled from control sites (usual care). Most participants (80%) expressed general satisfaction with PPC-PAC, and 90% of clinicians implemented the PPC-PAC intervention as intended. At 21 days follow-up, there were no significant differences in effectiveness outcomes. Conclusion: Implementation of the PPC-PAC intervention proved to be feasible and acceptable among older adults and clinicians. Future research should focus on testing the effectiveness of PPC-PAC and explore strategies for optimal intervention implementation and SNF staff engagement in the post-acute care setting. [ABSTRACT FROM AUTHOR]

As a result of the ageing prison population, it is anticipated that there will be a steady increase in individuals living in prison requiring access to End of Life (EoL) care in coming years. Research in this area is limited, despite it being concern of policy makers for several years. This paper aims to explore current EoL care provision in prison via nominal group methodology, to identify what forms of care have been implemented, what provision needs to be developed, and how might this be achieved. Ten professionals were recruited to a nominal group discussion and four themes were identified: 1) 'Consistent Family Input'; 2) 'Staffing'; 3) 'Ensuring Best Practice'; and 4) 'Person-Centred Assessment'. There was consensus that care pathways are currently in place for older prisoners diagnosed with a life limiting disease; however, the consistency of services is variable. Policy makers should consider the development of a national prison EoL strategy which embeds current good areas of practice whilst promoting equitable care delivery using multi-agency networks across the prison estate. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To expand your knowledge of palliative dementia care • To recognise the barriers and enablers to delivering palliative dementia care • To enhance your ability to recognise when a person is at the end of life. Dementia is characterised by memory loss, behavioural changes and decline of cognitive, social and physical functions and is a life-limiting condition. At the point of diagnosis it is classed as a palliative condition, yet there is limited public and healthcare professional awareness that, once diagnosed, a person will either die of dementia or die with dementia. This article discusses how the recognition and timing of the need for palliative dementia care is pivotal in providing person-centred care. The authors explore factors such as optimal prognostication, advance care planning, staff education and accessing support from palliative and end of life care teams and Admiral Nurses. The authors also use a fictional case study to demonstrate best practice in palliative dementia care. [ABSTRACT FROM AUTHOR]

Factors influencing preferred place of death (PPoD) are variable between individuals. However, there is little understanding of how these preferences are formed and how consistent they are in the final months of life. In particular, the expectation and responsibility of family caregivers to provide unpaid caregiving support to their dying loved one in the home is often overlooked. There is a need for clinicians to take an individualised approach to PPoD conversations that is inclusive of the needs of both the patient and the family caregiver. More Good Deaths – A Change Programme responds to this gap in care by advancing the skills of clinicians having PPoD conversations with patients and their family caregivers. This paper describes the programme, providing insight into its benefits to advanced care planning and communication, as well as to our newest service - Cottage Hospice. [ABSTRACT FROM AUTHOR]

Background: Caring for dying patients is associated with psychological trauma, strong emotions and enormous stress for nursing staff and nursing students who are reliable health care providers in such difficult situations. Nursing students involved in End-of –life care need to work through these emotions during clinical placements. This study explored the lived experiences of nursing students caring for the dying patients at Mulago national referral hospital. Methods: An explorative study was conducted using in-depth interviews among fifteen 3rd and 4th year undergraduate nursing students of Makerere University college of Health sciences. Data was audio recorded, verbatim transcribed and thematically analyzed using Atlas. ti version 6 software. Findings: Two themes emerged from students' narratives of their emotional and psychological experiences while caring for dying patients; (1) Psychological and emotional reactions, (2) Coping mechanisms. The sub-themes under Psychological and emotional reactions were; feelings of anger, triggers of anxiety symptoms, triggers of sadness and guilt feelings. The sub themes under coping mechanisms were; peer to peer support through interacting with each other about the experiences, engagement in problem solving, distancing from patients, spirituality and engaging in personal stress reducing activities. Conclusion: Nursing students experience various negative psychological and emotional reactions but devise different coping mechanisms to overcome them. There is need for development of clear guidelines on orientation of nursing students caring for dying patients, emphasis on building their emotional intelligence and more research on effectiveness of end of life educational interventions to mitigate the anticipated negative psychological and emotional reactions. [ABSTRACT FROM AUTHOR]

Our group developed an interprofessional education (IPE) program for home-based end-of-life (EOL) care among health and welfare professionals, with the purpose of understanding professional roles in EOL care and promoting mutual respect among team members. This study aimed to verify the understanding and awareness of the elements of IPE. Seven districts in a city in Japan were cluster-randomized into an education group or a control group. A questionnaire survey using original items to evaluate two purposes of the IPE program was conducted before the IPE workshop and seven months later. In total, 291 professionals participated in the study: 64 homecare nurses, 129 care managers, and 98 head care workers. Care managers and care workers in the education group significantly understood their own and other professional roles in EOL care (p=.01, p <.0001, respectively) and gained confidence in collaboration among health and welfare professionals (p =.02, p <.0001, respectively). Care workers in the education group felt respect for team members (p =.02). For homecare nurses, no significant effects were observed. The IPE was more effective for welfare professionals who had difficulty cooperating in end-of-life care. [ABSTRACT FROM AUTHOR]

Background: COVID-19 drastically affected healthcare services world-wide. In the UK, many cancer services were overwhelmed as oncology staff were reassigned, and cancer diagnoses and treatments were delayed. The impact of these pressures on end-of-life care for patients with advanced cancer and their relatives is not well understood. Methods: Secondary thematic analysis of qualitative survey and interview data, collected from family members and close friends bereaved by cancer, as part of a national COVID-19 bereavement study (Survey N = 156; Interview N = 10). Results: Four key themes were identified: The impact of COVID-19 on contact with patients towards the end of life; Mixed experiences of support for family members; Variable communication quality from health and social care professionals; Prioritisation of COVID-19 and its impact on patient care. Hospital care was perceived more negatively than community care in almost all areas, while support from cancer charities and district nurses was appreciated the most. Almost all participants felt that COVID-19 was detrimentally prioritised over care for their relative/friend. Conclusions: People bereaved by cancer were uniquely affected by pandemic-restrictions and disruptions to services. As services re-build post-pandemic, improvements in palliative care in hospitals, investment into community care, and ensuring compassionate communication with patients and families must be prioritised, alongside preparedness for future pandemics or similar events. [ABSTRACT FROM AUTHOR]

Background: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation. Aim: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems. Design: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation. Participants: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities). Results: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated. Conclusions: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation. [ABSTRACT FROM AUTHOR]

Purpose of review: This review aims to synthesise contemporary research on symptom management for people with advanced dementia who are thought to be in the final year of life. It highlights the unique challenges faced by palliative care and dementia care specialists, offering insights into the clinical decision-making required to support those with advanced dementia in various care settings. Recent findings: Recent studies indicate that people with advanced dementia often experience significant unmet palliative care needs, particularly regarding symptom management. Pain, breathlessness, and psychological distress are frequently mismanaged, which contributes to suboptimal care. Moreover, the unpredictable trajectory of dementia complicates the identification of end-of-life needs, which can result in fragmented care. Caregivers, both professional and family, struggle with managing complex symptoms, while family caregivers in home settings face added burdens in providing care without sufficient support. Summary: Palliative care for people with advanced dementia is currently inadequate due to a lack of tailored interventions, poor symptom management, and disjointed care systems. Enhancing training for caregivers, fostering interdisciplinary collaboration, and focusing on integrated care approaches across home and institutional settings are crucial to improving quality of life and symptom control for people with advanced dementia. [ABSTRACT FROM AUTHOR]

In Canada, most people prefer to die at home. However, the proportion of deaths that occur in hospital has increased over time. This study examined mortality rates and proportionate mortality in Innu communities in Labrador, and compared patterns to other communities in Labrador and Newfoundland. We conducted a cross-sectional ecological study with mortality data from the vital statistics system. This included information about all deaths in Newfoundland and Labrador from 1993 to 2018. We used descriptive statistics and rates to examine patterns by age, sex, cause and location. During the 2003 to 2018 period the leading cause of death in the Innu communities (excluding external causes) was cancer, followed by circulatory disease and respiratory disease. Between 1993 and 2018, there was a lower percentage of hospital deaths and a higher percentage of at home deaths in Innu communities than in the rest of the province. The majority of deaths among Innu were due to cancer and chronic diseases. We found a higher percentage of at home deaths in Innu communities compared to the rest of the province. [ABSTRACT FROM AUTHOR]

Abstract Background Caring for dying patients is associated with psychological trauma, strong emotions and enormous stress for nursing staff and nursing students who are reliable health care providers in such difficult situations. Nursing students involved in End-of –life care need to work through these emotions during clinical placements. This study explored the lived experiences of nursing students caring for the dying patients at Mulago national referral hospital. Methods An explorative study was conducted using in-depth interviews among fifteen 3rd and 4th year undergraduate nursing students of Makerere University college of Health sciences. Data was audio recorded, verbatim transcribed and thematically analyzed using Atlas. ti version 6 software. Findings Two themes emerged from students’ narratives of their emotional and psychological experiences while caring for dying patients; (1) Psychological and emotional reactions, (2) Coping mechanisms. The sub-themes under Psychological and emotional reactions were; feelings of anger, triggers of anxiety symptoms, triggers of sadness and guilt feelings. The sub themes under coping mechanisms were; peer to peer support through interacting with each other about the experiences, engagement in problem solving, distancing from patients, spirituality and engaging in personal stress reducing activities. Conclusion Nursing students experience various negative psychological and emotional reactions but devise different coping mechanisms to overcome them. There is need for development of clear guidelines on orientation of nursing students caring for dying patients, emphasis on building their emotional intelligence and more research on effectiveness of end of life educational interventions to mitigate the anticipated negative psychological and emotional reactions.

Abstract Since 2018, DonateLife South Australia and the Royal Adelaide Hospital (RAH) have collaborated to deliver routine family follow-up after bereavement in the intensive care unit (ICU). This follow-up includes a telephone interview that invites bereaved family members to comment on the quality of care and communication experienced in the ICU. To identify bereaved families’ experiences, including how they conceptualise good care and communication in intensive care, an analysis was conducted on all qualitative data collected during 118 interviews completed between 1 February 2018 and 30 May 2019. Reflexive thematic analysis was undertaken in an inductive and semantic way, with coding and theme generation being directed by the explicit content of the data, as conceptualised by Braun and Clarke. Initial codes were based on the interview questions, then additional codes were created during data analysis. Coding was informed by philosophical insights about concepts and the spirit of interpersonal engagement developed by Wittgenstein and Cordner, respectively. A concept map of the relationships observed between patterns of meaning in the data was created. Participants deeply appreciated staff providing them and their loved one with practical expressions of care and hospitality, however modest. These, along with staff sometimes crossing professional boundaries, expressed staff’s spirit of engagement, which in turn helped to maintain the patient’s dignity. Private space also helped to maintain the patient’s dignity, and it helped family to have enough time to say goodbye. Family not feeling rushed and being informed about their loved one dying also helped family to have enough time to say goodbye. Being informed depended on the quality of doctors’ communication. When family were not clearly informed, or had to wait long periods, they felt rushed and that they did not have enough time to say goodbye. Documents written to guide the assessment of intensive care comment on almost all of these matters, but the present study newly maps how they interact based on the extensive empirical evidence that it collected. Guidance documents should comment on giving staff scope to occasionally traverse a boundary, such as an institutional border or rule, to better support the patient and family, since families experience exceptionless practice insensitive to context as callous or disruptive of care.

PURPOSE: Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences. METHODS: We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants ACP experiences, and integrated the findings based on mailed materials or group visits intervention. RESULTS: All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, P

Abstract Background Ethical decision making is a complex issue because it strongly depends on the religion, beliefs, traditional laws and moral views of each society. The purpose of this study was to explore the experience of Iranian family caregivers of end stage cancer patients about ethical decision making. Methods This qualitative study is based on van Manen’s method of hermeneutic phenomenology. In-depth interviews were carried out to collect data. Participants were 12 caregiver. Audiotapes were transcribed and analyzed for common themes that represented the participants’ experiences. Trustworthiness of the findings was established using the Lincoln and Guba’s criteria. Results Three themes reflected the essence of caregivers’ lived experience including; fluctuating between hope and despair, wandering dilemma, and ethical decision making. Each of these themes consisted of several subthemes. Conclusion The present study revealed that, the caregivers of terminally ill cancer patients need different information about prognosis and end of life decision making process. Our perception of how families negotiate ethical issues in their decision-making is still developing. Opportunities should be created to empowering caregivers to talk about their uncertainties and concerns.

Abstract Background Complex high-precision radiotherapy, such as stereotactic body radiotherapy (SBRT), should only be offered to patients with sufficiently long survival. In the context of bone metastases radiotherapy, low rates of treatment close to the end of life, e.g. last 30 days (RT30), may serve as a quality of care indicator. While traditional, pain-relieving short-course regimens have been studied comprehensively, real-world SBRT results are still limited. Methods Retrospective analysis (2010–2023, n = 1117 episodes) of patients with bone metastases treated with traditional single-fraction (8 Gy × 1) or multi-fraction regimens (often 4 Gy × 5 or 3 Gy × 10) compared to stereotactic single-fraction (12–16 Gy × 1) or multi-fraction regimens. Results Except for gender, almost all baseline variables were uneven distributed. Failure to complete fractionated radiotherapy was uncommon in the stereotactic (4%) and non-stereotactic group (3%), p = 1.0. With regard to RT30, relevant differences emerged (19% for 8-Gy single-fraction versus 0% for stereotactic single-fraction, p = 0.01). The corresponding figures were 11% for multi-fraction non-stereotactic and 2% for multi-fraction stereotactic, p = 0.08. Median overall survival was shortest after 8-Gy single-fraction irradiation (4.2 months) and longest after stereotactic multi-fraction treatment (13.9 months). Neither stereotactic radiotherapy nor multi-fraction treatment improved survival in multivariate Cox regression analysis. Factors significantly associated with longer survival included better performance status, lower LabBM score (5 standard blood test results), stable disease outside of irradiated area(s), metachronous distant metastases, longer time interval from metastatic disease to bone irradiation, and outpatient status. Conclusion The implementation of SBRT for selected patients has resulted in low rates of non-completion and RT30. Optimal selection criteria remain to be determined, but in current clinical practice we exclude patients with poor performance status, unfavorable blood test results (high LabBM score) and progressive disease sites not amenable to SBRT. Established, guideline-endorsed short-course regimens, especially 8-Gy single-fraction treatment, continue to represent an important palliative approach.

Abstract Background Advance care planning (ACP) is a well-recognized quality indicator for palliative care. Despite two decades of effort, previous studies showed that ACP-related documentation and end-of-life discussion rates remain low for palliative care patients. Although ACP is about self-determination and autonomy, studies consistently show the importance of family involvement in adult patient’s medical decision-making. Yet, research on ACP interventions with structured components targeting family member remained limited. The current study aims to evaluate the effectiveness of a structured, family-supported, patient-centred ACP programme for adult palliative care patients and their families. Methods This is a 2-arm parallel group randomized controlled trial with follow-ups at 6 and 12 months. One hundred and seventy eligible palliative care patients and their families are planned to be recruited from three hospitals, and randomized to either a structured, family-supported, patient-centred ACP programme (ACP-Family) or usual ACP care (ACP-UC) arm. The ACP-Family intervention consists of 2 sessions. The primary outcome is family’s prediction accuracy of patient’s treatment preferences at 6 months. Secondary outcomes include proportions of new ACP documentations and family-reported perception of whether the patient’s end-of-life (EOL) care preference was respected; patient’s decisional conflict; quality of communication; family’s decision-making confidence; family’s anxiety and depression; and patients’ and family members’ satisfaction of the intervention. Outcomes of the two groups will be compared using regressions and linear mixed-effects models. Discussion This study will provide rigorous scientific evidence on the effectiveness of a structured and well-design family-supported, patient-centred ACP programme for adult palliative care patients and their family members in the hospital setting. If the ACP-Family proves to be effective, it will provide a structured and systematic approach to facilitate ACP discussions involving family members. This will respond to local needs and inform international ACP practice. Trial registration ClinicalTrials.gov Identifier: NCT05935540.

Objective: This study was conducted to determine the opinions of nurses working in surgical intensive care units (S-ICU) about the participation of family members (FM) in the care of patients during the dying process. Materials and Methods: Ethical approval was obtained before starting the research. The study was conducted in descriptive type with 81 nurses working in the S-ICU of a training and research hospital between 15 March and 15 April 2022. The data were collected through the descriptive information form and the nurse's opinion determination form created by the researcher. STROBE checklist was used in reporting the research. A p

Background: Ethical decision making is a complex issue because it strongly depends on the religion, beliefs, traditional laws and moral views of each society. The purpose of this study was to explore the experience of Iranian family caregivers of end stage cancer patients about ethical decision making. Methods: This qualitative study is based on van Manen's method of hermeneutic phenomenology. In-depth interviews were carried out to collect data. Participants were 12 caregiver. Audiotapes were transcribed and analyzed for common themes that represented the participants' experiences. Trustworthiness of the findings was established using the Lincoln and Guba's criteria. Results: Three themes reflected the essence of caregivers' lived experience including; fluctuating between hope and despair, wandering dilemma, and ethical decision making. Each of these themes consisted of several subthemes. Conclusion: The present study revealed that, the caregivers of terminally ill cancer patients need different information about prognosis and end of life decision making process. Our perception of how families negotiate ethical issues in their decision-making is still developing. Opportunities should be created to empowering caregivers to talk about their uncertainties and concerns. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a well-recognized quality indicator for palliative care. Despite two decades of effort, previous studies showed that ACP-related documentation and end-of-life discussion rates remain low for palliative care patients. Although ACP is about self-determination and autonomy, studies consistently show the importance of family involvement in adult patient's medical decision-making. Yet, research on ACP interventions with structured components targeting family member remained limited. The current study aims to evaluate the effectiveness of a structured, family-supported, patient-centred ACP programme for adult palliative care patients and their families. Methods: This is a 2-arm parallel group randomized controlled trial with follow-ups at 6 and 12 months. One hundred and seventy eligible palliative care patients and their families are planned to be recruited from three hospitals, and randomized to either a structured, family-supported, patient-centred ACP programme (ACP-Family) or usual ACP care (ACP-UC) arm. The ACP-Family intervention consists of 2 sessions. The primary outcome is family's prediction accuracy of patient's treatment preferences at 6 months. Secondary outcomes include proportions of new ACP documentations and family-reported perception of whether the patient's end-of-life (EOL) care preference was respected; patient's decisional conflict; quality of communication; family's decision-making confidence; family's anxiety and depression; and patients' and family members' satisfaction of the intervention. Outcomes of the two groups will be compared using regressions and linear mixed-effects models. Discussion: This study will provide rigorous scientific evidence on the effectiveness of a structured and well-design family-supported, patient-centred ACP programme for adult palliative care patients and their family members in the hospital setting. If the ACP-Family proves to be effective, it will provide a structured and systematic approach to facilitate ACP discussions involving family members. This will respond to local needs and inform international ACP practice. Trial registration: ClinicalTrials.gov Identifier: NCT05935540. [ABSTRACT FROM AUTHOR]

This study was conducted to determine the good death perceptions of intensive care and oncology inpatient unit nurses, their attitudes toward care of the dying and the correlation between them. The sample of this study consisted of 134 intensive care and oncology inpatient unit nurses. The data were collected using the Frommelt Attitudes Toward Care of the Dying Scale and the Good Death Scale. As the results of the study, the nurses had high good death perceptions. They had moderately positive attitudes toward care of the dying patients. As their good death perceptions increased, their positive attitudes toward care of the dying individual also increased. It is recommended to organize programs to raise awareness of nurses about good death and attitudes toward the dying patients and to strengthen their communication and coping methods. [ABSTRACT FROM AUTHOR]

Background: Complex high-precision radiotherapy, such as stereotactic body radiotherapy (SBRT), should only be offered to patients with sufficiently long survival. In the context of bone metastases radiotherapy, low rates of treatment close to the end of life, e.g. last 30 days (RT30), may serve as a quality of care indicator. While traditional, pain-relieving short-course regimens have been studied comprehensively, real-world SBRT results are still limited. Methods: Retrospective analysis (2010–2023, n = 1117 episodes) of patients with bone metastases treated with traditional single-fraction (8 Gy × 1) or multi-fraction regimens (often 4 Gy × 5 or 3 Gy × 10) compared to stereotactic single-fraction (12–16 Gy × 1) or multi-fraction regimens. Results: Except for gender, almost all baseline variables were uneven distributed. Failure to complete fractionated radiotherapy was uncommon in the stereotactic (4%) and non-stereotactic group (3%), p = 1.0. With regard to RT30, relevant differences emerged (19% for 8-Gy single-fraction versus 0% for stereotactic single-fraction, p = 0.01). The corresponding figures were 11% for multi-fraction non-stereotactic and 2% for multi-fraction stereotactic, p = 0.08. Median overall survival was shortest after 8-Gy single-fraction irradiation (4.2 months) and longest after stereotactic multi-fraction treatment (13.9 months). Neither stereotactic radiotherapy nor multi-fraction treatment improved survival in multivariate Cox regression analysis. Factors significantly associated with longer survival included better performance status, lower LabBM score (5 standard blood test results), stable disease outside of irradiated area(s), metachronous distant metastases, longer time interval from metastatic disease to bone irradiation, and outpatient status. Conclusion: The implementation of SBRT for selected patients has resulted in low rates of non-completion and RT30. Optimal selection criteria remain to be determined, but in current clinical practice we exclude patients with poor performance status, unfavorable blood test results (high LabBM score) and progressive disease sites not amenable to SBRT. Established, guideline-endorsed short-course regimens, especially 8-Gy single-fraction treatment, continue to represent an important palliative approach. [ABSTRACT FROM AUTHOR]

Introduction: The care of critically ill patients involves communication and shared decision-making with families and determination of goals of care. Analyzing these aspects through electronic health records (EHRs) can support research in ICUs, associating them with outcomes. This review aims to explore studies that examine these topics. Methods: A scoping review was conducted through a systematic literature search of articles in PubMed, Web of Science, and Embase databases using MESH terms up to 2024, conducted in ICU settings, focusing on communication with families, shared decision-making, goals, and end-of-life care. Results: A total of 10 articles were included, divided into themes: Records and family, and records in quality improvement projects. Variables based on records with common characteristics were identified. Outcome analysis was performed through questionnaires to family members, healthcare professionals or by analyzing care processes. The studies revealed associations between family members' perceptions and mental health symptoms and documented elements such as communication, therapeutic limitations, social and spiritual support. Studies evaluating quality communication improvement projects did not show significant impact on documented care, except for those that assessed improvements based on palliative care. Conclusion: The analysis of documented care for critically ill patients can be conducted from various perspectives. Processes amenable to improvement, such as communication with family members, definition of goals of care, limitations, shared decision-making, evaluated through EHRs, are associated with mental health symptoms and perceptions of families of critically ill patients. Documentation-based studies can contribute to improvements in patient- and family-centered care in the ICU. [ABSTRACT FROM AUTHOR]

With a rapidly aging population, Canada has a growing need for public health palliative care services. End of life care, including palliative care, is holistic in nature, paying attention to the physical, psychological, social-cultural, and spiritual needs of the person who is dying and their networks of friends, family, and caregivers. Public health approaches to palliative care work to strengthen community capacities to provide care in tandem with medical and social services. This study reports on the findings of the Healthy End of Life Project (HELP Ottawa), a 4.5-year community-based research project, to demonstrate the importance of including faith communities in public health palliative care initiatives. Focusing on Christian faith communities, this article explores how faith communities can best build the capacity to offer, ask for, and accept support for members who are living with advanced illness, caregiving, or grieving. [ABSTRACT FROM AUTHOR]

Over the second half of the twentieth century, advances in medicine enabled treatment of previously life-ending illnesses. The resulting shift in place of care for mortally sick people from home to hospital succeeded in preventing many premature deaths, yet it also caused the public to lose familiarity with the process of 'ordinary dying.' The loss of public understanding of dying has resulted in avoidance of conversations about dying, in failure to anticipate and plan ahead, and in avoidable distress as deathbed companions misinterpret features of the dying process as suffering. This opinion piece reflects on the need for health and care workers to understand, recognise and talk about the process of dying, the better to prepare and support the elderly and sick people in our care and their companions. [ABSTRACT FROM AUTHOR]

Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language. We conducted a cross-sectional study of patients who died at Texas Children's Hospital from 2018 to 2019. Demographics, date of death, and final code status were extracted. Medical complexity prior to admission and mode of death were obtained from chart review. We included 433 patients. Over one-third were Hispanic (39.3%) with 42.3% preferring Spanish. The majority were White (61.4%) or Black (21.0%). Most patients had significant medical complexity (52.0%) or were infants in their birth admission (29.4%). Half (52.4%) received palliative care; patients with increased medical complexity were more likely to have palliative care involved (P <0.001). There were no differences in palliative care, code status, or mode of death by race. Hispanic patients were less likely to have a full code status (OR 0.42, 95% CI: 0.25–0.73). Spanish-speaking patients were more likely to have palliative care involvement (OR 2.05, 95% CI: 1.21–3.46) and less likely full code orders (OR 0.24, 95% CI: 0.1–0.63). Palliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multicenter studies are needed to characterize more widespread experiences. [ABSTRACT FROM AUTHOR]

Congestive Heart Failure (CHF) poses significant challenges to the healthcare system due to its high rates of morbidity and mortality as well as frequent readmissions. All of these factors contribute to increased healthcare delivery costs. Besides the burden on the healthcare system, CHF has far deeper effects on the patient in terms of psychological burden along with debilitating symptoms of dyspnea, all of which reduce quality of life. Prognostic awareness among patients about their disease along with initiating early goals of care discussion by those involved in the care (physicians, nurses, social worker and patient themselves) can help mitigate these challenges. Adopting a proactive approach to address patient preferences, values and end-of-life goals improves patient-centred care, enhances quality of life and reduces the strain on healthcare resources. In this narrative review, studies have been identified using PubMed search to shed knowledge on what is preventing the initiation of goals of care discussions. Some barriers include lack of knowledge about prognosis in both patients and caregivers, inexperience or discomfort in having those conversations and delaying it until CHF becomes too advanced. Plain Language Summary Heart disease is the leading cause of death in the United States and by 2030, around 8.5 million people are expected to suffer from heart failure due to increasing rates of obesity, diabetes, smoking, high blood pressure and coronary heart disease. People with heart failure often have severe physical symptoms and emotional distress, which affects their quality of life. Palliative care, which aims to relieve symptoms and provide support, is essential for these patients and their families. It helps improve communication about the disease, reduces hospital readmissions and increases the chances of patients enrolling in hospice care. However, discussions about end-of-life care often do not happen in time or at all for heart failure patients. There are many barriers, including physician's inability to explain the downsides of life-sustaining treatments and patients and families struggling to accept the poor prognosis of the disease. It's important to develop scoring systems, like the Gagne Combined Comorbidity score, to help physicians identify patients at risk of poor outcomes and start end-of-life care discussions early. Signs that a patient might need palliative care include frequent hospital visits, severe ongoing symptoms and advanced treatments. Despite its importance, many heart failure patients do not receive timely palliative care. Early discussions about care preferences, integrating palliative care into regular treatment, and timely hospice referrals can greatly improve the quality of life for these patients and their families. Article highlights Introduction The prevalence from Heart Failure is increasing with increase in hospitalisations and mortality. Heart Failure patients nor only suffer from physical symptoms but from psychological symptoms as well. Therefore, an early discussion on goals of care for HF patients is crucial. Early GoC discussions can include various stakeholders like healthcare providers, patients and social workers. Stakeholders Healthcare Providers face difficulty in having a GoC discussion with the patients due to difficulty in estimating prognosis, difficulty initiating GoC discussion it might be assumed to be giving up. Patients may have barriers to receive GoC information such as lack of faith in the healthcare providers and personal barriers such as anxiety, autonomy and family support. Social workers could possibly help in facilitating difficult conversations by understanding family dynamics and focusing on potential cultural issues that may arise during GoC discussion Discussion The purpose of engaging in a GoC discussion is to gain an insight into the patient's values, goals and preferences for end-of-life care as well as to choose a healthcare surrogate. Early GoC discussion decreases recurrent hospital admission and length of hospital stay. [ABSTRACT FROM AUTHOR]

Aim: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. Methods: This exploratory qualitative study was conducted with 20 nurses working in Turkey. Study data were collected through in-depth and semi-structured individual interviews. The interviews were then submitted to thematic analysis. Results: Three themes emerged from analyses of the interviews: (1) inadequate support for delivery of palliative care, (2) perceptions of family readiness, and (3) providing information/education to the family. The most prominent difficulties experienced by nurses were inadequacy of unit and equipment and lack of trained personnel. Another important issue that stood out was families' not accepting the end-of-life care decision for the fetus or the neonate and their having unrealistic expectations. Conclusion: Study results have provided important considerations for regional isolated neonatal and perinatal units, and they will be used to inform clinical practice improvements, staff education support, policies/procedures, family support, and further research relating to end-of-life care provision for the most vulnerable babies and their families. [ABSTRACT FROM AUTHOR]

The proliferation of assisted dying legislative reforms globally is a significant change in the social and medico‐legal landscape of end‐of‐life care. Understanding the impacts of these legislative reforms on family members who care for a dying person is vital, yet under‐theorised in research. In this article, drawing on semi‐structured interviews with 42 carers for a person who has sought assisted dying in Australia, and extending ideas of ontological choreography we explore the new and complex choreographies enacted by carers in their endeavour to arrange a 'good death' for the dying person. We find that desires to fulfil the dying person's wishes are often accompanied by normative pressures, affective tensions and complexities in bereavement. Enacting assisted dying requires carers to perform a repertoire of highly‐staged practices. Yet, institutional obstacles and normative cultural scripts of dying can constrain carer assisted dying practices. Understanding the nuances of carers' experiences and how they navigate this new end‐of‐life landscape, we argue, provides critical insights about how assisted dying legislation is producing new cultural touchpoints for caring at the end of life. Moreover, we show how emerging cultural scripts of assisted dying are impacting in the lives of these carers. [ABSTRACT FROM AUTHOR]

Palliative care, an integral component of supportive oncology, enhances the quality of life for patients living with cancer. Whilst palliative care has historically been synonymous with the provision of care at the end of life, it is increasingly playing a role earlier in a patient's cancer journey; frequently in conjunction with administration of anticancer treatment. Although early integration has been shown to improve patient outcomes, service development remains in its infancy and consideration of challenges bears relevance. Addressing issues pertaining to resource allocation in addition to adequate training of staff will aid to ensure the provision of care that aligns with the goals and priorities of patients. This review presents the role of early palliative care within the realm of supportive oncology with respect to the evidence of benefit and ethical, clinical and practical considerations. Relevant papers have been chosen for inclusion on the basis of clinical relevance, timeliness and relevance to cancer patients and clinical teams involved in their care. [ABSTRACT FROM AUTHOR]

Objectives: This study identifies the mechanisms through which supportive and palliative care services at the end-of-life helped prevent unnecessary use of acute care services. Background: From 2016 to 2021, the Medicare Care Choices Model (MCCM) tested whether offering Medicare beneficiaries the option to receive supportive and palliative care services through hospice providers, concurrently with treatments for their terminal conditions, improved patients' quality of life and care and reduced Medicare expenditures. Previous MCCM evaluation results showed that the model achieved its goals, but did not examine in depth the causal mechanisms leading to these results. Methods: Mixed-methods evaluation based on descriptive analysis of MCCM encounter data and qualitative analysis of interviews with staff from high-performing MCCM hospices. Results: MCCM hospices provided 217 156 encounters to 7263 enrollees over 6 years. Enrollees received on average 30 encounters with hospice staff while enrolled in the model, representing about 10 encounters per month enrolled. Most encounters were delivered by clinically trained staff in the patient's home. Hospice staff identified five services critical for keeping patients from seeking acute care services: early and frequent needs assessments, direct observation of patients in their homes, immediate responses to patients' medical complaints, round-the-clock telephone access to nursing staff, and communication and coordination of care with primary care physicians and specialists. Conclusions: Palliative care approaches that are high-touch, employ clinically trained staff who visit patients in their homes, routinely evaluate how to manage patient symptoms, and are available when needs arise can improve outcomes and decrease costs at the end of life. [ABSTRACT FROM AUTHOR]

Background : All physicians encounter patients with serious illness. Medical students recognize the value of hospice and palliative medicine (HPM) and desire more knowledge and skills in this area. However, both pre-clinical and clinical HPM content are underrepresented within medical school curricula. Objectives : To conduct a pilot study examining the impact of a novel required HPM clinical experience on pre-clinical medical and dental students' learning through mixed methods evaluation of student responses. Design : Students completed a two-part electronic survey following a half-day HPM mentored clinical shadowing experience (HPM-MCSE) which included an introductory session, a faculty-mentored shadowing experience and a debriefing session. Setting/subjects: 163 first-year students at Harvard Medical School in Boston, Massachusetts, USA in 2022. Measurements : The survey collected demographic information and student responses to both closed-ended (Likert-scale) and open-ended prompts. Data were analyzed quantitatively using descriptive statistics and qualitatively using constant comparative methodology. Results : 127 medical and dental students responded (78% response rate). Qualitative analysis yielded three overarching themes: acquisition of knowledge about operational dimensions of HPM, acquisition of knowledge about psychosocial dimensions of HPM, and personal impact including an awareness of discordance between expectations and lived experience of HPM practice. Of the 109 students who completed the entire survey, 67% indicated that this experience increased their interest in palliative care and 98% reported an increase in their understanding of how palliative care enhances patient care. Conclusions : Early clinical exposure to HPM for first year students stimulates multi-dimensional learning about HPM and evokes personal reflection about serious illness care. [ABSTRACT FROM AUTHOR]

Objective: This study was conducted to determine the opinions of nurses working in surgical intensive care units (S-ICU) about the participation of family members (FM) in the care of patients during the dying process. Materials and Methods: Ethical approval was obtained before starting the research. The study was conducted in descriptive type with 81 nurses working in the S-ICU of a training and research hospital between 15 March and 15 April 2022. The data were collected through the descriptive information form and the nurse's opinion determination form created by the researcher. STROBE checklist was used in reporting the research. A p<0.05 value was accepted for statistical significance. Results: The mean age of the nurses participating in the study was 32.39±5.87 years, and the duration of working experience in S-ICUs was 5.69±5.76 years. The rate of nurses wanting the FM of patients in the dying process to participate in the patient care in the intensive care unit is 26%, the rate of not wanting is 57%, and the rate of undecided is 17%. 72.8% of the nurses think that the participation of FM in care is beneficial for the patients, while 27.2% think that it is harmful. It was determined that nurses with working experience had a higher support rate in cases where FMs participated in the care of patients in the dying process (p=0.010) (p<0.05). Conclusion: Although nurses working in S-ICUs think that the participation of FM in the care of patients in the dying process will be beneficial for patients, the rate of support is low. [ABSTRACT FROM AUTHOR]

Background: The treatments of hematological malignancies tend to be intense, and compared with solid tumors, less is known about the health care consumption during end of life (EOL). Therefore, the aim was to study the receipt of specialized palliative care (SPC) and how it affects health care utilization, in relation to sex, age, socioeconomics, and frailty risk (Hospital Frailty Risk Score [HFRS]). Methods: In a retrospective, observational registry study, all patients who died of a hematological malignancy during the years 2015–2021 in the Stockholm County were included and analyzed with descriptive statistics and logistic regression models. Results: Of the 2,858 included patients (mean age 76 years, 41% women), 38% had myeloid malignancies, 41% lymphocytic malignancies, and 21% had myeloma. During the last 3 months of life, 56% received SPC, with an overrepresentation of women, aOR 1.35 (1.16–1.58, p < 0.0001), whereas persons with risk of frailty (HFRS) were underrepresented, aOR 0.74 (0.63–0.86, p < 0.0001). Unplanned ER visits were more likely in persons aged over 80 years (p = 0.004) and in persons with frailty risk (p < 0.0001). Patients receiving SPC had a substantially reduced likelihood of ER visits, aOR 0.34 (0.29–0.40, p < 0.0001). Emergency hospitals as place of death was positively associated with frailty risk, aOR 1.50 (1.23–1.83, p < 0.0001) but negatively associated with age over 80 years (p < 0.0001) and especially with receipt of SPC, aOR 0.05 (0.04–0.06, p < 0.0001). Interpretation: Receipt of SPC could possibly reduce the need for emergency care in the end of life and the Stockholm model might facilitate referral to SPC for hematological patients.

IntroductionPalliative and End of Life care (PEoLC) in the United Kingdom (UK) is increasingly being reported as inadequate. This is occurring amidst a wider backdrop of health and social care systems facing unprecedented pressure, particularly as they recover from the long-term impact of the COVID-19 pandemic. This study aimed to explore the barriers to PEoLC faced by those providing and receiving care in South-West England (UK). This region of the UK brings its own set of unique challenges due to its rural and coastal location, an aging population, and a historical lack of research.MethodsAn exploratory study was conducted which involved patients, families, and professionals who were providing and receiving PEoLC. A total of 13 qualitative focus groups were held with a total of 63 participants; 45 were health and care professionals and 18 were people toward the end of their life, family/carers and people who were bereaved.ResultsA range of barriers were identified for those providing and receiving PEoLC services. These were a lack of specialist palliative and EoL care resources (particularly in out-of-hours care); poor communication, collaboration and co-ordination across providers; inequalities in the access and provision of care; the impact of the COVID-19 pandemic; and a reluctance to have conversations about death and dying.ConclusionThis study brings together the voices of patients, family, and professionals from different settings in a geographical area of the UK. Understanding their experiences and perceived barriers to care is key to being able to develop and transform care. Ultimately, there is a need for a collaborative and co-ordinated approach across both practice and research, working toward what is important to those providing, and most importantly, those receiving care at the end of their lives.

In Canada, most people prefer to die at home. However, the proportion of deaths that occur in hospital has increased over time. This study examined mortality rates and proportionate mortality in Innu communities in Labrador, and compared patterns to other communities in Labrador and Newfoundland. We conducted a cross-sectional ecological study with mortality data from the vital statistics system. This included information about all deaths in Newfoundland and Labrador from 1993 to 2018. We used descriptive statistics and rates to examine patterns by age, sex, cause and location. During the 2003 to 2018 period the leading cause of death in the Innu communities (excluding external causes) was cancer, followed by circulatory disease and respiratory disease. Between 1993 and 2018, there was a lower percentage of hospital deaths and a higher percentage of at home deaths in Innu communities than in the rest of the province. The majority of deaths among Innu were due to cancer and chronic diseases. We found a higher percentage of at home deaths in Innu communities compared to the rest of the province.

Abstract Background Withholding or withdrawing life-sustaining treatment in end-of-life patients is a challenging ethical issue faced by physicians. Understanding physicians’ experiences and factors influencing their decisions can lead to improvement in end-of-life care. Objectives To investigate the experiences of Thai physicians when making decisions regarding the withholding or withdrawal of life-sustaining treatments in end-of-life situations. Additionally, the study aims to assess the consensus among physicians regarding the factors that influence these decisions and to explore the influence of families or surrogates on the decision-making process of physicians, utilizing case-based surveys. Methods A web-based survey was conducted among physicians practicing in Chiang Mai University Hospital (June - October 2022). Results Among 251 physicians (response rate 38.3%), most of the respondents (60.6%) reported that they experienced withholding or withdrawal treatment in end-of-life patients. Factors that influence their decision-making include patient’s preferences (100%), prognosis (93.4%), patients’ quality of life (92.8%), treatment burden (89.5%), and families’ request (87.5%). For a chronic disease with comatose condition, the majority of the physicians (47%) chose to continue treatments, including cardiopulmonary resuscitation (CPR). In contrast, only 2 physicians (0.8%) would do everything, in cases when families or surrogates insisted on stopping the treatment. This increased to 78.1% if the families insisted on continuing treatment. Conclusion Withholding and withdrawal of life-sustaining treatments are common in Thailand. The key factors influencing their decision-making process included patient’s preferences and medical conditions and families’ requests. Effective communication and early engagement in advanced care planning between physicians, patients, and families empower them to align treatment choices with personal values.

Abstract Background Innovative small-scale facilities for dementia focus on providing quality of life and maintaining the functional abilities of residents while offering residents a home for life. To fulfill the home-for-life principle, palliative care approaches are necessary to maintain quality of life in these facilities. Few studies have reported on how palliative care is provided to residents in small-scale facilities. The aim of our review is to determine the extent to which palliative care approaches are reported in small-scale facilities. Methods A scoping review of the literature using recommended methods from the Joanna Briggs Institute. Four databases, CINAHL, PubMed, PsycINFO, and Web of Science, were searched for studies published from 1995 to 2023. One reviewer completed the title, abstract and full-text screening and data extraction; two additional team members piloted the screening and extraction process and met with the main reviewer to make decisions about article inclusion and ensure consistency and accuracy in the review process. The extracted data was open-coded and analyzed using thematic analysis. The data was then synthesized into themes using palliative care domains for dementia. Results Of the 800 articles obtained in the search, only ten met the inclusion criteria: six from Japan, two from the Netherlands, and one each from Austria and the United States. In most small-scale facilities, palliative care is important, with facilities prioritizing family involvement and person-centred care, minimizing resident discomfort and enhancing residents’ remaining abilities until the end of life. The included studies did not discuss palliative care policies or professional staff training in depth. Conclusions This study provides an overview of the literature on palliative care in small-scale facilities for individuals with dementia. Most facilities focus on residents’ wishes at the end of life to enhance comfort and provide a home-like environment. However, more research is needed to further understand the quality of palliative care approaches in these homes.

Abstract Background France allows deep sedation for pain relief, but not for euthanasia. In anticipation of an increase in home-based palliative care, the role of general practitioners is central to the design of outpatient palliative care services. This study aimed to describe the knowledge, attitudes, and practices of general practitioners in mainland France regarding palliative and end of life care. Methods This was a national descriptive cross-sectional study within the Sentinelles network. Self-report questionnaires were distributed to general practitioners between November 2020 and November 2021. A descriptive analysis was carried out. Results Out of the 123 participating general practitioners, 84% had received academic training in palliative care (n = 104). While a significant majority (69%) expressed comfort in pain management, only a quarter (25%) declared that they were competent at indicating deep and continuous sedation for pain relief. Awareness of outpatient palliative care facilities close to their place of practice such as hospitalization at home was over 97% (n = 117/120). Awareness of hospital facilities, including identified palliative care beds on hospital wards and palliative care units, was lower (75% (n = 59/79) and 86% (n = 86/100), respectively). Conclusions Our results suggest that French general practitioners are reasonably aware of palliative care resources available. However, there is room for improvement, particularly in understanding hospital-based facilities. Furthermore, a quarter of the general practitioners expressed discomfort with deep and continuous sedation for pain relief, highlighting the need for increased training in this specific aspect of palliative and end of life care.

Abstract Background During the COVID-19 pandemic, the way in which end-of-life care was provided, underwent a lot of changes and therefor different domains of end-of-life care were impacted. The aim of this study is to describe whether health care providers considered end-of-life care (in medical, nursing, psychosocial and spiritual care) limited by the pandemic through the first 18 months of the COVID-19 pandemic, and examine associations with COVID-19 related circumstances of care (e.g. visit restrictions) and health care providers’ characteristics. Methods A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic’s first 18 months. Data of four time periods were analyzed using descriptive statistics and Generalized Estimating Equation. Results Of the respondents (n = 302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Especially in the first wave end-of-life care in all aspects was limited according to a substantial part of health care providers (between 29.7 and 57.7%). Psychosocial and spiritual care were more limited than medical and nursing care during all time periods. Care being limited according to health care providers was associated with visit restrictions, shortness of personal protective equipment or restrictions in caring for the deceased and decreased over time. Conclusion The COVID-19 pandemic impacted different aspects of end-of-life care throughout the pandemic’s first 18 months. Over the course of the pandemic health care providers seemed to have invented ways to adjust their work in order to minimize the effect of limiting measures. More involvement of health care providers in decision-making may improve the prioritization of measures to deal with crisis situations in care. These reflections highlight priorities during crises and the role healthcare providers could play in maintaining good end-of-life care. This remains relevant in new health crises, where care may differ from what is considered good quality of care.