Search

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

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]

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]

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]

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]

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]

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]

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]

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]

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 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 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.

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

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 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 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.

Abstract Context Advance Care Planning (ACP), as a process for expressing and recording patients' preferences about end-of-life care, has received increasing attention in recent years. However, implementing ACP has been challenging in Iran. Objectives To assess the readiness for advance care planning and related factors in the general population of Iran. Methods This cross-sectional study was conducted on the general population of Iran in 2022. The data was collected using demographic information questionnaire and The RACP Scale. The purpose and methodology of the research was explained to all participants, and upon their agreement an informed consent was obtained. Participants were invited to fill out the questionnaires wherever is more convenient for them, either alone or if needed, with the help of the researcher to protect their privacy. Chi-square, fisher exact test and multiple logistic Regression model were used to assess the effective factors on the RACP. The data were analyzed by SPSS software version 26. Results A total of 641 people with an average age of 36.85 ± 12.05 years participated in this study. Of those, 377 (58.8%) had high RACP. The logistics model showed an association between the chance of readiness for receiving ACP with participants’ education level, such that the chance of readiness in those with Master's or Ph.D. degrees was three times higher than those with a diploma (p = 0.00, OR:3.178(1.672, 6.043)). However, the chances of readiness in those with bachelor’s degrees was not significantly different from those with a diploma (p = 0.936, OR: 0.984 (0.654, 1.479)). Moreover, the chance of readiness was 1.5 higher in participants over 40 years of age compared with participants under the age of 40 (P = 0.01, OR: 1.571(1.10, 2.23)). Conclusion According to the findings of this study, it can be concluded that there is a relatively RACP among people in Iranian society. The readiness of individuals for ACP increases by their age and education level. Therefore, by holding appropriate training intervention, we can increase the readiness of the public for ACP to improve their end-of-life outcome.

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]

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]

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]

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]

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]

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 FROM AUTHOR]

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 FROM AUTHOR]

Why you should read this article: • To recognise that being able to die well with dementia is of equal importance to living well with dementia • To consider why there may be a low uptake of advance care planning (ACP) in people with dementia • To learn about when to initiate an ACP discussion with a person with dementia. Recent policy focus in dementia care has been on living well with the condition; however, being able to die well with dementia is of equal importance. Advance care planning (ACP) enables people to consider, express and record their wishes and preferences for palliative and end of life care, however there is a low uptake of ACP in people with dementia. Although ACP discussions should be initiated as soon as possible after a diagnosis of dementia, there are other opportunities and transition points in the person’s care during which health and social care professionals could promote, engage in and support ACP discussions. This article considers the importance of ACP in dementia care and uses a case study to explore opportunities for initiating and engaging in ACP with people with dementia. [ABSTRACT FROM AUTHOR]

Objectives: Concurrent care is a unique care delivery system that allows patients to receive disease modifying treatments and other supportive interventions while also receiving the traditional benefits of hospice care. The objectives of our observational study were to examine health care utilization, use of cancer-directed therapies and palliative interventions, and location of death in patients enrolled in concurrent care. Methods: 72 hematology-oncology patients at the Hines Veteran's Affairs Medical Center (VAMC) who enrolled in concurrent care from 12/2018-4/2021 were reviewed. Data were summarized with descriptive statistics including medians and percentages. Results: A minority of patients received cytotoxic chemotherapy (27.8%), immunotherapy (20.8%), palliative radiation (20.9%), blood products (11.1%), or invasive pain procedures (4.2%). Patients also used fewer cancer-directed treatments as they approached end of life (24.4% within 30 days of death compared to 13.3% within 14 days of death). Most patients died at home (62.9%) or in inpatient hospice (12.9%) as opposed to the hospital (2.9%). Conclusions: A minority of concurrent care patients received cancer-directed therapies or additional types of health care interventions despite the option to do so. Cancer-directed treatment utilization also decreased as patients approached end of life. Patients enrolled in concurrent care were able to appreciate its benefits for longer, as the average length of stay on concurrent care was nearly 3 months. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 FROM AUTHOR]

Background: Healthcare inequities for patients with traumatic brain injury (TBI) represent a major priority area for trauma quality improvement. We hypothesized a relationship between health insurance status and timing of withdrawal of life sustaining treatment (WLST) for adults with severe TBI. Methods: This multicenter retrospective observational cohort study utilized data collected between 2017 and 2020. We identified adult (age ≥ 16) patients with isolated severe TBI admitted participating Trauma Quality Improvement Program centers. We determined the relationship between insurance status (public, private, and uninsured) and the timing of WLST using a competing risk survival analysis framework adjusting for baseline, clinical, injury and trauma center characteristics. Multivariable cause-specific Cox regressions were used to compute adjusted hazard ratios (HR) reflecting timing of WLST, accounting for mortality events. We also quantified the between-center residual variability in WLST using the median odds ratio (MOR) and measured insurance status association with access to rehabilitation at discharge. Results: We identified 42,111 adults with isolated severe TBI treated across 509 trauma centers across North America. There were 10,771 (25.6%) WLST events in the cohort and a higher unadjusted incidence of WLST events was evident in public insurance patients compared to private or uninsured groups. After adjustment, WLST occurred earlier for publicly insured (HR 1.07, 95% CI 1.02–1.12) and uninsured patients (HR 1.29, 95% CI 1.18–1.41) compared to privately insured patients. Access to rehabilitation was lower for both publicly insured and uninsured patients compared to patients with private insurance. Accounting for case-mix, the MOR was 1.49 (95% CI 1.43–1.55), reflecting significant residual between-center variation in WLST decision-making. Conclusions: Our findings highlight the presence of disparate WLST practices independently associated with health insurance status. Additionally, these results emphasize between-center variability in WLST, persisting despite adjustments for measurable patient and trauma center characteristics. [ABSTRACT FROM AUTHOR]

Context: Advance Care Planning (ACP), as a process for expressing and recording patients' preferences about end-of-life care, has received increasing attention in recent years. However, implementing ACP has been challenging in Iran. Objectives: To assess the readiness for advance care planning and related factors in the general population of Iran. Methods: This cross-sectional study was conducted on the general population of Iran in 2022. The data was collected using demographic information questionnaire and The RACP Scale. The purpose and methodology of the research was explained to all participants, and upon their agreement an informed consent was obtained. Participants were invited to fill out the questionnaires wherever is more convenient for them, either alone or if needed, with the help of the researcher to protect their privacy. Chi-square, fisher exact test and multiple logistic Regression model were used to assess the effective factors on the RACP. The data were analyzed by SPSS software version 26. Results: A total of 641 people with an average age of 36.85 ± 12.05 years participated in this study. Of those, 377 (58.8%) had high RACP. The logistics model showed an association between the chance of readiness for receiving ACP with participants' education level, such that the chance of readiness in those with Master's or Ph.D. degrees was three times higher than those with a diploma (p = 0.00, OR:3.178(1.672, 6.043)). However, the chances of readiness in those with bachelor's degrees was not significantly different from those with a diploma (p = 0.936, OR: 0.984 (0.654, 1.479)). Moreover, the chance of readiness was 1.5 higher in participants over 40 years of age compared with participants under the age of 40 (P = 0.01, OR: 1.571(1.10, 2.23)). Conclusion: According to the findings of this study, it can be concluded that there is a relatively RACP among people in Iranian society. The readiness of individuals for ACP increases by their age and education level. Therefore, by holding appropriate training intervention, we can increase the readiness of the public for ACP to improve their end-of-life outcome. [ABSTRACT FROM AUTHOR]

Background: Black Americans experience the highest prevalence of heart failure (HF) and the worst clinical outcomes of any racial or ethnic group, but little is known about end-of-life care for this population. Objective: Compare treatment intensity between Black and White older adults with HF near the end of life. Design: Negative binomial and logistic regression analyses of pooled, cross-sectional data from the Health and Retirement Study (HRS). Setting/Subjects: A total of 1607 U.S. adults aged 65 years and older with HF who identify as Black or White, and whose proxy informant participated in an HRS exit interview between 2002 and 2016. Measurements: We compared four common measures of treatment intensity at the end of life (number of hospital admissions, receipt of care in an intensive care unit (ICU), utilization of life support, and whether the decedent died in a hospital) between Black and White HF patients, controlling for demographic, social, and health characteristics. Results: Racial identity was not significantly associated with the number of hospital admissions or admission to an ICU in the last 24 months of life. However, Black HF patients were more likely to spend time on life support (odds ratio [OR] = 2.16, confidence interval [CI] = 1.35–3.44, p = 0.00) and more likely to die in a hospital (OR = 1.53, CI = 1.03–2.28, p = 0.04) than White HF patients. Conclusion: Black HF patients were more likely to die in a hospital and to spend time on life support than White HF patients. Thoughtful and consistent engagement with HF patients regarding treatment preferences is an important step in addressing inequities. [ABSTRACT FROM AUTHOR]

Background: Caring for bereaved families is an important aspect of the nursing role in critical care. Memory making practices are one way in which dying, death and bereavement can be acknowledged and supported within critical care. Memory making was introduced into the care of stillborn babies and neonatal deaths to improve parents' experiences of bereavement, and has since become common practice in adult critical care. Aims: The aim of this qualitative thematic synthesis was to explore families' experiences of memory making in critical care, with a view of gaining greater understanding of the ways in which memory making impacts bereaved families. Methods: A systematic search strategy was developed, and five databases were searched (Medline, CINAHL, PsychINFO, Embase and ASSIA). Seven qualitative studies were included: four were conducted in adult and three in paediatric critical care settings in which memory making was initiated between 2014 and 2020. Memory making practices included, patient diaries, general keepsakes, word clouds and photography. Results: The thematic synthesis generated four main themes to describe families' experience of memory making in critical care: 'connection', 'compassion', 'engagement and creation' and 'continuation'. Conclusions: Memory making is a meaningful activity for families whose loved one dies in critical care; it brings focus and meaning during a devastating process in a highly technical environment. Families rely heavily on nursing staff for support and guidance. The creation of memories and/or keepsakes can have a positive impact on the bereavement experience for families and can facilitate a continuing bond with their loved one. Relevance to Clinical Practice: Memory making is a worthwhile practice to support and guide family bereavement within critical care. It can provide structure and purpose during an emotionally challenging transition, by supporting families to focus on a meaningful activity during a devasting time. [ABSTRACT FROM AUTHOR]

A crucial part of theory-driven realist thinking is retroduction, the process of looking backwards for explanation of how and why things may be. Conducted early in the realist evaluation process, it provides a foundation for evidenced 'theory gleaning'. Despite retroduction being an inherent part of the realist process, it is often 'hidden' in realist reports. This paper explains the thinking behind, alongside an example of, a framework created by the authors to make transparent the retroductive process as used in a realist evaluation of two community End of Life Care services. The approach makes visible the application of the 'sociological imagination' and lends robustness to hypotheses by establishing how the authors utilised: wide-ranging potential generative causation; stakeholder and Patient and Public Involvement feedback; literature scoping; and substantive theories at the middle range, specifically Transitions Theory. These stages led to the development of Initial Programme Theories, with a clear history of genesis. [ABSTRACT FROM AUTHOR]

With the aging population, there is an increased need for nurses with competence in chronic illness and palliative care management particularly in long-term care settings. The incorporation of palliative care education in nursing curricula has been explored previously. This review aimed to appraise the current literature on the state of palliative care education in academia and how it impacts the preparedness of nurses to enter long-term care post-graduation. There has not been an integrative review exploring curriculum-based palliative care education for long-term care. This review was guided by the method of Whittemore and Knafl using critical appraisal tools. The CINAHL, Cochrane, EBSCO, ERIC, Journals@Ovid, Medline, PsycINFO, and ScienceDirect databases were searched for peer-reviewed literature from 2017 to 2022. Sixteen items met the search criteria for appraisal, and 11 items were retained for discussion. There is a gap in nursing curricula in preparing nurses for the situations faced by long-term care nurses. Long-term care nurses develop strong bonds with residents and families and often lack time, space, and resources to cultivate the confidence and competence as palliative situations arise. More research is needed to determine the best placement in nursing programs for palliative-based long-term care education. • More nurses with competence and confidence in palliative care delivery are needed. • Nurses who enter long-term care practice do not feel prepared to deliver palliative care. • Stronger palliative education initiatives are needed in nursing programs. [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 Background The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. Methods A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer. Results A practical resource to support service provision and development was produced; a grab-and-go guide called “Small Steps, Big Visions”. It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a ‘what’ (definition), ‘ask’ (prompt questions), and ‘examples in action’ (drawn from case studies). Conclusions Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key.

Abstract Background Medical Assistance in Dying (MAiD) was legalized in Canada in 2016. Canada’s legislation is the first to permit Nurse Practitioners (NP) to serve as independent MAiD assessors and providers. Registered Nurses’ (RN) also have important roles in MAiD that include MAiD care coordination; client and family teaching and support, MAiD procedural quality; healthcare provider and public education; and bereavement care for family. Nurses have a right under the law to conscientious objection to participating in MAiD. Therefore, it is essential to prepare nurses in their entry-level education for the practice implications and moral complexities inherent in this practice. Knowing what nursing students think about MAiD is a critical first step. Therefore, the purpose of this study was to develop a survey to measure nursing students’ knowledge, attitudes and beliefs, influences, and willingness to be involved in MAiD in the Canadian context. Methods The design was a mixed-method, modified e-Delphi method that entailed item generation from the literature, item refinement through a 2 round survey of an expert faculty panel, and item validation through a cognitive focus group interview with nursing students. The settings were a University located in an urban area and a College located in a rural area in Western Canada. Results During phase 1, a 56-item survey was developed from existing literature that included demographic items and items designed to measure experience with death and dying (including MAiD), education and preparation, attitudes and beliefs, influences on those beliefs, and anticipated future involvement. During phase 2, an expert faculty panel reviewed, modified, and prioritized the items yielding 51 items. During phase 3, a sample of nursing students further evaluated and modified the language in the survey to aid readability and comprehension. The final survey consists of 45 items including 4 case studies. Discussion Systematic evaluation of knowledge-to-date coupled with stakeholder perspectives supports robust survey design. This study yielded a survey to assess nursing students’ attitudes toward MAiD in a Canadian context. Conclusion The survey is appropriate for use in education and research to measure knowledge and attitudes about MAiD among nurse trainees and can be a helpful step in preparing nursing students for entry-level practice.

Abstract Objectives To maintain continuity of care during the Covid-19 pandemic, virtual consultations (VC) became the mainstay of patient-healthcare practitioner interactions. The aim of this study was to explore the views of oncology and palliative care healthcare professionals (HCPs) regarding the medium of VC. Method A cross sectional mixed methodology observational study of oncology and palliative care HCPs, analysed via an inductive thematic approach. This was undertaken in accordance with relevant guidelines and regulations. Results 87 surveys were completed. Three master themes were identified. Personal, professional, and familial factors including patient age, illness and VC skillset all influenced practitioner’s experience of VC. Relationships and connection were highlighted by survey respondents as important influences, with a perception that VC could reduce usual relationships with patients, compared to previous face-to-face consults. There was a perceived loss in these domains with VC. Sharing bad news and having challenging conversations was seen as particularly difficult via VC. Many survey respondents emphasized that they preferred to have first time consultations face-to-face, and not virtually. Within the domain of logistical and practical implications reduced travel and increased accessibility were seen as a significant benefit of VC. The inability to examine patients and concerns regarding missing clinical signs was emphasised as a significant worry, alongside the challenges faced with occasionally failing technology. Conclusion VC were felt to have a role for those patients who are already known to professionals, where there was an established relationship. VC for difficult discussions and for unstable patients were felt to be inadequate. Triaging patient suitability prior to offering VC, with emphasis on the importance of patient choice, was seen as a priority in this new era of VC.

Abstract Background End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration NCT04678310. Registered 21/12/2020.

Background: The intensive care unit (ICU) is a busy and complex workplace, and several work-related and personal factors are known to make ICU nurses more vulnerable to moral distress than other healthcare professionals. It is crucial to identify these factors to guide future studies and preventive strategies. This scoping review explores such factors to present current knowledge on the factors that trigger moral distress and to guide future research by reviewing studies to explore and summarize factors that trigger moral distress in ICU nurses. Methods: The PubMed, EBSCO, and CINAHL Plus databases were searched to identify potentially relevant studies published between 2011 to 2022. Inclusion criteria: peer-reviewed studies published in English that provided results regarding factors causes or correlated to moral distress in ICU nurses. After removing 618 duplicates, 316 papers were excluded after title and abstract screening, leaving 71 articles for full-text screening. A further 54 articles were excluded as their outcomes did not include factors that caused moral distress, or were not specific to ICU nurses, so 17 studies were eventually analysed using qualitative content analysis through an inductive approach. The findings of the articles were extracted and coded independently by two authors, and data were grouped and categorized. Results: The content categories of factors contributing to ICU nurses' moral distress were organized into themes and subthemes. Four major themes were identified: Powerlessness, end-of-life care, ineffective teamwork, and personal characteristics of ICU nurses. Conclusions: This review highlights the factors that contribute to moral distress in critical care nurses, which are mainly attributable to the organizational climate and the nature of the ICU clinical environment. Descriptive and intervention studies (experimental or action research) must investigate causality between identified variables to inform management strategies to improve support for ICU nurses’ coping relative to moral distress.

Background: The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. Methods: A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer. Results: A practical resource to support service provision and development was produced; a grab-and-go guide called "Small Steps, Big Visions". It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a 'what' (definition), 'ask' (prompt questions), and 'examples in action' (drawn from case studies). Conclusions: Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key. [ABSTRACT FROM AUTHOR]