The ethics of clinically assisted nutrition and hydration in adults and the role of the advanced clinical practitioner.

Clinically assisted nutrition and hydration (CANH) decision-making in adult patients presents complex ethical dilemmas that require careful consideration and navigation. This clinical review addresses the multifaceted aspects of CANH, emphasising the importance of ethical frameworks and the role of advanced clinical practitioners (ACPs) in guiding decision-making processes. The pivotal role of ACPs is highlighted, from their responsibilities and challenges in decision-making to the collaborative approach they facilitate involving patients, families and multidisciplinary teams. The article also explores ethical principles such as autonomy, beneficence, non-maleficence, and justice, elucidating their application in CANH decision-making. Legal and ethical frameworks covering CANH are examined, alongside case studies illustrating ethical dilemmas and resolutions. Patient-centred approaches to CANH decision-making are discussed, emphasising effective communication and consideration of cultural and religious beliefs. End-of-life considerations and palliative care in CANH are also examined, including the transition to palliative care and ethical considerations in withdrawal or withholding of CANH. Future directions for research and implications for clinical practice are outlined, highlighting the need for ongoing ethical reflection and the integration of ACPs in CANH decision-making.

End-of-life care and grief: study conducted with family members of COVID-19 victims. / Cuidados no final de vida e luto: estudo com familiares de vítimas da COVID-19.

This article aims to investigate the implications of grief among family members of COVID-19 victims; verify the prevalence of prolonged grief symptoms; and identify family members' expectations regarding end-of-life care for their loved ones affected by COVID-19. Descriptive, cross-sectional research, with a quantitative-qualitative approach. Data collection was performed using an online questionnaire, guided by the PG-13 instrument. Descriptive and inferential statistics were applied. The results were presented descriptively and with the aid of tables. The study sample included 142 family members, mostly female, who presented emotional, physical, social, and financial implications as a result of grief. A prevalence of prolonged grief symptoms was observed in 11.4% of the mourners with more than six months and 29.6% of those with less than six months. Three thematic categories were identified: transparency in communicating the health situation, access to moments of farewell, and promotion of comfort in care actions. The symptoms of Prolonged Grief Disorder have a significant association with the degree of kinship. In final care, family members' expectations were classified as: permission for a dignified farewell, effective communication, and promotion of comfort and care.

O objetivo deste artigo é investigar implicações do luto em familiares de vítimas da COVID-19; verificar a prevalência de sintomas de luto prolongado; identificar expectativas dos familiares acerca do cuidado em fim de vida de seus entes acometidos por COVID-19. Pesquisa descritiva, transversal, com abordagem quanti-qualitativa. Coleta de dados mediante questionário on-line, norteado pelo instrumento PG-13. Aplicou-se estatística descritiva e inferencial. Os resultados foram apresentados de forma descritiva e com auxílio de tabelas. Amostra de 142 familiares, maioria do sexo feminino, que apresentaram implicações emocionais, físicas, sociais e financeiras em decorrência do luto. Houve prevalência de sintomas de luto prolongado em 11,4% dos enlutados com mais de seis meses e 29.6% dos que tinham menos de seis meses. Foram identificadas três categorias temáticas: transparência na comunicação da situação de saúde, acesso a momentos de despedida e promoção de conforto nas ações de cuidado. Os sintomas de Transtorno de Luto Prolongado possuem associação significativa com o grau de parentesco. Nos cuidados finais as expectativas dos familiares foram classificadas em: permissão para despedida digna, comunicação efetiva e promoção de conforto e cuidado.

[Do not resuscitate orders and limitation of therapeutic effort: Ethical challenges in healthcare teams in Chile]. / Orden de no reanimar y limitación del esfuerzo terapéutico: desafíos éticos en equipos sanitarios en Chile.

The purpose of this paper is to delve into the ethical aspects experienced by the healthcare team when they receive the directive to limit therapeutic effort or a do-not-resuscitate order. From an interpretative, qualitative paradigm with a content analysis approach, a process based on three phases was conducted: pre-analysis in which categories were identified, the projection of the analysis, and inductive analysis. During 2023, interviews were conducted in the clinical setting of a high-complexity hospital in Chile with 56 members of the healthcare teams from critical and emergency units, from which four categories emerged: a) the risk of violating patients' rights by using do-not-resuscitate orders and limiting therapeutic effort; b) the gap in the interpretation of the legal framework addressing the care and attention of patients at the end of life or with terminal illnesses by the healthcare team; c) ethical conflicts in end-of-life care; and d) efficient care versus holistic care in patients with terminal illness. There are significant gaps in bioethics training and aspects of a good death in healthcare teams facing the directive to limit therapeutic effort and not resuscitate. It is suggested to train personnel and work on a consensus guide to address the ethical aspects of a good death.

El propósito de este trabajo es profundizar en los aspectos éticos que experimenta el equipo de salud cuando reciben la indicación de limitar el esfuerzo terapéutico o la orden de no reanimar. Desde un paradigma interpretativo, cualitativo y con un enfoque de análisis de contenido, se realizó un proceso basado en tres fases: preanálisis en el que se identificaron las categorías, la proyección del análisis y el análisis inductivo. Durante 2023, se realizaron entrevistas en el entorno clínico de un hospital de alta complejidad en Chile a 56 miembros de equipos de salud de unidades críticas y urgencias, de las que emergieron cuatro categorías: a) riesgo de vulnerar los derechos de los pacientes al utilizar la orden de no reanimar, y limitación del esfuerzo terapéutico; b) brecha en la interpretación del marco legal que aborda la atención y cuidado de pacientes al final de la vida, o con enfermedades terminales por parte del equipo de salud; c) conflictos éticos de la atención al final de la vida; y d) el cuidado eficiente o el cuidado holístico en pacientes con enfermedad terminal. Existen brechas importantes en la formación en bioética y aspectos del buen morir en los equipos de salud que se enfrentan a la orden de limitar el esfuerzo terapéutico y no reanimar. Se sugiere capacitar al personal, y trabajar una guía de consenso para abordar los aspectos éticos del buen morir.

Factors Associated With Quality-of-Dying-and-Death Classes Among Critically Ill Patients.

Importance: Improving end-of-life care in the intensive care unit (ICU) is a priority, but clinically modifiable factors of quality of dying and death (QODD) are seldom identified. Objectives: To comprehensively identify factors associated with QODD classes of dying ICU patients, emphasizing clinically modifiable factors based on the integrative framework of factors associated with for bereavement outcomes. Design, Setting, and Participants: This observational cohort study was conducted at medical ICUs of 2 Taiwanese medical centers from January 2018 to March 2020 with follow-up through December 2022. Eligible participants included primary family surrogates responsible for decision making for critically ill ICU patients at high risk of death (Acute Physiology and Chronic Health Evaluation II score >20) but who survived more than 3 days after ICU admission. Data analysis was conducted from July to September 2023. Main Outcomes and Measures: QODD was measured by the 23-item ICU-QODD questionnaire. Factors associated with patient membership in 4 previously determined QODD classes (high, moderate, poor to uncertain, and worst) were examined using a 3-step approach for latent class modeling with the high QODD class as the reference category. Results: A total of 309 family surrogates (mean [SD] age, 49.83 [12.55] years; 184 women [59.5%] and 125 men [40.5%]) were included in the study. Of all surrogates, 91 (29.4%) were the patients' spouse and 66 (53.7%) were the patients' adult child. Patient demographics were not associated with QODD class. Two family demographics (age and gender), relationship with the patient (spousal or adult-child), and length of ICU stay were associated with QODD classes. Patients of surrogates perceiving greater social support were less likely to be in the poor to uncertain (adjusted odds ratio [aOR], 0.89; 95% CI, 0.83-0.94) and worst (aOR, 0.92; 95% CI, 0.87-0.96) QODD classes. Family meetings were associated with the poor to uncertain QODD class (aOR, 8.61; 95% CI, 2.49-29.74) and worst QODD class (aOR, 7.28; 95% CI, 1.37-38.71). Death with cardiopulmonary resuscitation was associated with the worst QODD class (aOR, 7.51; 95% CI, 1.12-50.25). Family presence at patient death was uniformly negatively associated with the moderate QODD class (aOR, 0.16; 95% CI, 0.05-0.54), poor to uncertain QODD class (aOR, 0.21; 95% CI, 0.05-0.82), and worst QODD class (aOR, 0.08; 95% CI, 0.02-0.38). Higher family satisfaction with ICU care was negatively associated with the poor to uncertain QODD class (aOR, 0.93; 95% CI, 0.87-0.98) and worst QODD class (aOR, 0.86; 95% CI, 0.81-0.92). Conclusions and Relevance: In this cohort study of critically ill patients and their family surrogates, modifiable end-of-life ICU-care characteristics played a more significant role in associations with patient QODD class than did immutable family demographics, preexisting family health conditions, patient demographics, and patient clinical characteristics, thereby illuminating actionable opportunities to improve end-of-life ICU care.

Dying well in Aotearoa New Zealand for ethnic minority communities: a time for reclamation?

Despite technological advances and a disproportionate increase in health expenditure at the end-of-life, most New Zealanders die in hospital or in aged residential care. This counters the aspirations espoused by Te Whatu Ora (Health New Zealand) for all New Zealanders "to live well, age well and die well in their homes and communities." Furthermore, despite reported inequities in end-of-life care experienced by ethnic minority communities (EMCs) overseas, and increasing proportions of people identifying with Asian, Middle Eastern, Latin American and African ethnicities in Aotearoa New Zealand, local data, research and policies addressing healthcare needs of EMCs at end-of-life are scant. Acknowledging this invisibility, we reflect on and discuss the current discourses on death and dying, the complex experiences at end-of-life for EMCs, including concepts of a "good death", the impact of recent existential crises (e.g., COVID-19 pandemic, climate change) on death awareness, and the global rise to reclaim dying as an important part of living. We argue for the need: a) to partner with ethnic communities to co-design culturally safe end-of-life health services, and b) to adopt a "compassionate communities" public health approach that can support people of EMCs at the end-of-life to die well.

Medical costs of Swedish nursing home residents at the end of life: a retrospective observational registry study.

BACKGROUND: There are many studies of medical costs in late life in general, but nursing home residents' needs and the costs of external medical services and interventions outside of nursing home services are less well described. METHODS: We examined the direct medical costs of nursing home residents in their last year of life, as well as limited to the period of stay in the nursing home, adjusted for age, sex, Hospital Frailty Risk Score (HFRS), and diagnosis of dementia or advanced cancer. This was an observational retrospective study of registry data from all diseased nursing home residents during the years 2015-2021 using healthcare consumption data from the Stockholm Regional Council, Sweden. T tests, Wilcoxon rank sum tests and chi-square tests were used for comparisons of groups, and generalized linear models (GLMs) were constructed for univariable and multivariable linear regressions of health cost expenditures to calculate risk ratios (RRs) with 95% confidence intervals (95% CIs). RESULTS: According to the adjusted (multivariable) models for the 38,805 studied nursing home decedents, when studying the actual period of stay in nursing homes, we found significantly greater medical costs associated with male sex (RR 1.29 (1.25-1.33), p < 0.0001) and younger age (65-79 years vs. ≥90 years: RR 1.92 (1.85-2.01), p < 0.0001). Costs were also greater for those at risk of frailty according to the Hospital Frailty Risk Score (HFRS) (intermediate risk: RR 3.63 (3.52-3.75), p < 0.0001; high risk: RR 7.84 (7.53-8.16), p < 0.0001); or with advanced cancer (RR 2.41 (2.26-2.57), p < 0.0001), while dementia was associated with lower medical costs (RR 0.54 (0.52-0.55), p < 0.0001). The figures were similar when calculating the costs for the entire last year of life (regardless of whether they were nursing home residents throughout the year). CONCLUSIONS: Despite any obvious explanatory factors, male and younger residents had higher medical costs at the end of life than women. Having a risk of frailty or a diagnosis of advanced cancer was strongly associated with higher costs, whereas a dementia diagnosis was associated with lower external, medical costs. These findings could lead us to consider reimbursement models that could be differentiated based on the observed differences.

A Hospice Transitions Program for Patients in the Emergency Department.

Importance: Patients often visit the emergency department (ED) near the end of life. Their common disposition is inpatient hospital admission, which can result in a delayed transition to hospice care and, ultimately, an inpatient hospital death that may be misaligned with their goals of care. Objective: To assess the association of hospice use with a novel multidisciplinary hospice program to rapidly identify and enroll eligible patients presenting to the ED near end of life. Design, Setting, and Participants: This pre-post quality improvement study of a novel, multifaceted care transitions program involving a formalized pathway with email alerts, clinician training, hospice vendor expansion, metric creation, and data tracking was conducted at a large, urban tertiary care academic medical center affiliated with a comprehensive cancer center among adult patients presenting to the ED near the end of life. The control period before program launch was from September 1, 2018, to January 31, 2020, and the intervention period after program launch was from August 1, 2021, to December 31, 2022. Main Outcome and Measures: The primary outcome was a transition to hospice without hospital admission and/or hospice admission within 96 hours of the ED visit. Secondary outcomes included length of stay and in-hospital mortality. Results: This study included 270 patients (median age, 74.0 years [IQR, 62.0-85.0 years]; 133 of 270 women [49.3%]) in the control period, and 388 patients (median age, 73.0 years [IQR, 60.0-84.0 years]; 208 of 388 women [53.6%]) in the intervention period, identified as eligible for hospice transition within 96 hours of ED arrival. In the control period, 61 patients (22.6%) achieved the primary outcome compared with 210 patients (54.1%) in the intervention period (P < .001). The intervention was associated with the primary outcome after adjustment for age, race and ethnicity, primary payer, Charlson Comorbidity Index, and presence of a Medical Order for Life-Sustaining Treatment (MOLST) (adjusted odds ratio, 5.02; 95% CI, 3.17-7.94). In addition, the presence of a MOLST was independently associated with hospice transition across all groups (adjusted odds ratio, 1.88; 95% CI, 1.18-2.99). There was no significant difference between the control and intervention periods in inpatient length of stay (median, 2.0 days [IQR, 1.1-3.0 days] vs 1.9 days [IQR, 1.1-3.0 days]; P = .84), but in-hospital mortality was lower in the intervention period (48.5% [188 of 388] vs 64.4% [174 of 270]; P < .001). Conclusions and Relevance: In this quality improvement study, a multidisciplinary program to facilitate ED patient transitions was associated with hospice use. Further investigation is needed to examine the generalizability and sustainability of the program.

Normality and compassionate care: experiences from advanced cancer patients in their last time at home.

BACKGROUND: Many cancer patients prefer to receive palliative treatment at home, as it allows them to be in a familiar and comfortable environment. Integrating Advance Care Planning (ACP) into routine practice in primary healthcare helps patients and their relatives prepare for end-of-life (EoL) care in accordance with patients' preferences. This includes the option to spend their final days at home if desired. The aim of this study was to gain insights from experiences of advanced seriously ill cancer patients at home while receiving palliative treatment and being engaged in ACP within primary healthcare settings. METHOD: This study employed a qualitative design, utilizing individual, semi-structured interviews that were analysed through reflexive thematic analysis, employing an abductive approach with a latent-level focus. The study included interviews with 12 participants with cancer who were receiving palliative care, had an estimated lifetime under 3 months, and had undergone an organized ACP approach in primary healthcare, documented with a palliative plan. RESULTS: Participants emphasized the importance of (1) Preserving normality at home, maintaining a sense of routine, comfort, and familiarity in the face of present and future challenges. The top obstacles for success identified by participants included (1a) The challenge of deterioration and the dual aspects of (1b) The value and burden of family caregivers. Cancer treatment placed a significant demand on patients due to side effects. Family caregivers played a crucial role for participants, providing support in daily life and serving as a key factor in the overall decision to which extend they are able to involve in support and care at home in the future. (2) Compassionate health care personnel (HCP) made a difference by fostering a culture of understanding participants' concerns, fears, and preferences, which was a key element that built and maintained trust for the participants. (3) Preparing for the future, especially EoL discussions initiated by healthcare personnel, was deemed important but, at times, uncomfortable for participants as it confronted them with reality. Guidance from ACP provided them with a sense of certainty and control. CONCLUSION: Preserving normality at home, along with the desire to stay at home for as long as possible, is a crucial goal for advanced cancer patients. Consistent professional communication and care in primary healthcare play a key role in building and maintaining trust, as well as fostering a sense of certainty and control for the participants.

Older adults' attitudes toward using Euthanasia at the end-of life: cancer vs. Parkinson's disease.

Background: There is a paucity of studies that compare older adults' attitudes toward Euthanasia in two different terminal illnesses. Moreover, these studies did not relate to potentially influencing psycho-social factors. The current study aimed to examine the impact of a diverse range of variables on attitudes among older adults toward Euthanasia in two medical conditions: cancer and Parkinson's disease. Methods: A total of 501 individuals aged 75 and above participated in the study. Attitudes toward Euthanasia were measured using vignettes which described two conditions: an 80-year-old man with metastatic cancer and another man in an advanced stage of Parkinson's disease. The questionnaire included measures of relevant experience (with a close family member or a friend dying from a terminal illness), self-efficacy, will to live, satisfaction with life, will to prolong life, fear of death and dying, social support, and psycho-social characteristics. The data were analyzed using hierarchical linear regression models. Results: A more positive attitude toward Euthanasia was found in the case of cancer compared to Parkinson's disease. Being a woman, having more years of education, lower level of religiosity, greater fear of death and dying and higher self-efficacy contributes to more favorable attitudes toward Euthanasia in both end-of life conditions. Conclusions: The finding that attitudes toward Euthanasia are statistically significantly more positive in the case of cancer compared to Parkinson's disease can be attributed to the greater prevalence of cancer in the population, and to the public's awareness of the suffering associated with each of these medical conditions. Beyond the important role of the socio-demographic characteristics of gender, education, and religiosity, it appears that fear of death and dying and self-efficacy are important psychological factors in explaining attitudes toward Euthanasia in both illnesses among older people. These findings shed light on older adults' attitudes toward Euthanasia in debilitating illnesses.

The meaning of culture in nursing at the end of life - an interview study with nurses in specialized palliative care.

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

Strategies to improve end-of-life decision-making and palliative care following hip fracture in frail older adults: a scoping review.

BACKGROUND: Although surgery is the gold standard following a hip fracture, the potential for rehabilitation and survival rates are low in frail older patients. Some patients may derive more benefit from palliative care. The objectives of this review were to identify the available strategies to improve end-of-life decision-making and palliative care for frail patients with hip fractures and to synthetise their level of support. METHODS: We conducted a scoping review of the scientific and grey literature, searching seven databases and websites of associations. We included all study designs, expert opinion articles and clinical practice guidelines (CPGs). Data were synthetised according to the Approach to Patient with Limited Life Expectancy and Hip Fracture framework. The number of research items and their level of evidence were tabulated for each of the recommended strategies. RESULTS: Of the 10 591 items identified, 34 were eligible. The majority of included articles were original research studies (n = 15). Half of the articles and CPGs focused on intervention categories (55%) such as goals of care discussion and comfort care, followed by factors to consider in the end-of-life decision-making process (25%) and prognosis assessments (20%), mainly through the estimation of life expectancy. The level of evidence for these strategies remains low, given the limited number of prospective studies supporting them. CONCLUSIONS: This scoping review highlighted that end-of-life care in frail older patients with a hip fracture remains understudied. The strategies identified could be prioritised for future research to improve the well-being of the target population while promoting sustainable resource management.

The impact of clinical internship experience on nursing students' attitudes towards death and choices of end-of-life care: A self-control study.

AIM: This study aims to explore the impact of emergency department internships on the attitudes towards death among undergraduate nursing students and their preferences for end-of-life care settings. Additionally, the study analyzes the reasons behind nursing students' choices of end-of-life care settings and provides insights for improving undergraduate education on attitudes towards death and end-of-life care, and provide reference for the development of emergency hospice care. DESIGN: This study adopts an observational design with a self-controlled before-and-after approach. METHODS: A questionnaire survey was conducted with 96 nursing interns between July 2021 to June 2022. Demographic information and data on attitudes towards death, and preferences for end-oflife care location were collected by online questionnaire. Paired test were conducted to compare differences between groups. RESULTS: The study included a total of 96 nursing students with an average age of 21.11 years. The scores for the avoidance-acceptance dimension of death attitudes before and after the internship were 2.40 (1.80, 3.00) and 2.20 (1.60, 3.00), respectively, showing a significant difference (Z = -2.084, p = 0.037). Factors such as gender, experience in caring for critically ill or dying patients, knowledge of death education, and discussions about death at home were found to influence nursing students' attitudes towards death. Nursing students expressed a preference for receiving end-of-life care and treatment in their homes or in hospice/palliative care wards, while the intensive care unit, emergency department, and nursing homes were the least preferred settings. There were significant differences in nursing students' preferences for end-of-life care settings before and after the internship (p = 0.000). Importantly, the number of nursing students expressing a desire to receive end-of-life care in the emergency department increased from 2 to 7 after the internship, while the number of students not wanting end-of-life care in the emergency department decreased by 5.

Impact of a prospective feedback loop aimed at reducing non-beneficial treatments in older people admitted to hospital and potentially nearing the end of life. A cluster stepped-wedge randomised controlled trial.

OBJECTIVES: To investigate if a prospective feedback loop that flags older patients at risk of death can reduce non-beneficial treatment at end of life. DESIGN: Prospective stepped-wedge cluster randomised trial with usual care and intervention phases. SETTING: Three large tertiary public hospitals in south-east Queensland, Australia. PARTICIPANTS: 14 clinical teams were recruited across the three hospitals. Teams were recruited based on a consistent history of admitting patients aged 75+ years, and needed a nominated lead specialist consultant. Under the care of these teams, there were 4,268 patients (median age 84 years) who were potentially near the end of life and flagged at risk of non-beneficial treatment. INTERVENTION: The intervention notified clinicians of patients under their care determined as at-risk of non-beneficial treatment. There were two notification flags: a real-time notification and an email sent to clinicians about the at-risk patients at the end of each screening day. The nudge intervention ran for 16-35 weeks across the three hospitals. MAIN OUTCOME MEASURES: The primary outcome was the proportion of patients with one or more intensive care unit (ICU) admissions. The secondary outcomes examined times from patients being flagged at-risk. RESULTS: There was no improvement in the primary outcome of reduced ICU admissions (mean probability difference [intervention minus usual care] = -0.01, 95% confidence interval -0.08 to 0.01). There were no differences for the times to death, discharge, or medical emergency call. There was a reduction in the probability of re-admission to hospital during the intervention phase (mean probability difference -0.08, 95% confidence interval -0.13 to -0.03). CONCLUSIONS: This nudge intervention was not sufficient to reduce the trial's non-beneficial treatment outcomes in older hospital patients. TRIAL REGISTRATION: Australia New Zealand Clinical Trial Registry, ACTRN12619000675123 (registered 6 May 2019).

Understanding barriers and facilitators to palliative and end-of-life care research: a mixed method study of generalist and specialist health, social care, and research professionals.

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.

Decreased aggressive care at the end of life among advanced cancer patients in the Republic of Korea: a nationwide study from 2012 to 2018.

BACKGROUND: This study aimed to investigate the trends of aggressive care at the end-of-life (EoL) for patients with advanced cancer in Korea and to identify factors affecting such care analyzing nationwide data between 2012 to 2018. METHODS: This was a population-based, retrospective nationwide study. We used administrative data from the National Health Insurance Service and the Korea Central Cancer Registry to analyze 125,350 patients aged 20 years and above who died within one year of a stage IV cancer diagnosis between 2012 and 2018. RESULTS: The overall aggressiveness of EoL care decreased between 2012 and 2018. In patients' last month of life, chemotherapy use (37.1% to 32.3%; p < 0.05), cardiopulmonary resuscitation (13.2% to 10.4%; p < 0.05), and intensive care unit admission (15.2% to 11.1%; p < 0.05) decreased during the study period, although no significant trend was noted in the number of emergency room visits. A steep increase was seen in inpatient hospice use in the last month of life (8.6% to 26.6%; p < 0.05), while downward trends were observed for hospice admission within three days prior to death (13.9% to 11%; p < 0.05). Patients were more likely to receive aggressive EoL care if they were younger, women, had treatment in tertiary hospitals, or had hematologic malignancies. In the subgroup analysis, the overall trend of aggressive EoL care decreased for all five major cancer types. CONCLUSION: The aggressiveness of EoL care in stage IV cancer patients showed an overall decrease during 2012-2018 in Korea.

DECIDE (Diverse experiences of End-of-Life Care for Dementia) establishing consensus and capacity for future research through collaboration and co-production.

BACKGROUND: Dementia is a leading cause of death globally. However, end-of-life care is often poor or non-existent. People with dementia from ethnic minorities or socioeconomically deprived communities are even less likely to receive good palliative care. Despite this, research into end-of-life care often fails to include people from these populations. AIM: To find out what research is required to improve end-of-life care for everyone with dementia and how to facilitate inclusivity. METHOD: A scoping review of the academic literature (Medline, CINAHL, EMBASE, PsycInfo and Scopus databases) published between Jan 2000 and April 2023 was conducted. Findings were shared with diverse key stakeholders through a series of workshops. Conclusions were subsequently used to provide evidence-based recommendations for inclusive end-of-life care and future research. RESULTS: Themes from the literature were evident in the personal and professional experiences of key stakeholders. Palliative care providers are often ignorant of the needs of those dying in the margins. Support services are scarce and unequal geographically. There is a lack of personalised and culturally appropriate care for those with dementia and their families. Themes from the stakeholder groups included a need for better communication between services, and more investment into dementia as a palliative condition, with avenues created to increase trust and facilitate engagement with services. CONCLUSION: Future research should focus on educational strategies, including how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions, with appropriate models of inclusive, appropriately funded care needed.

Withholding or withdrawing life support in nephrology: a perspective in the French-speaking background / Adaptation raisonnée des thérapeutiques (ART en néphrologie) - Guide pratique LAT-MRC1.

Chronic kidney disease (CKD) characterized by long duration, simplicity at beginning versus complexity at advanced stages. Hemodialysis and peritoneal dialysis are renal replacement therapy allowing life extension, but comorbidities and frailty could be burdensome over time. The academic society, Société Francophone de Néphrologie, Dialyse, Transplantation (SFNDT), publishes clinical practice guidelines to optimize CKD treatment in this context, to support shared decision-making in the appropriate initiation of and withdrawal from dialysis, and to supervise end-of-life cares in the French-speaking countries.

La maladie rénale chronique (MRC) se caractérise par sa durée ­ 10 à 20 ans, parfois plus ­, sa simplicité aux stades initiaux, puis sa complexité aux stades avancés. Hémodialyse (HD) et dialyse péritonéale (DP) sont des traitements de suppléance d'une fonction vitale qui peuvent être réalisés pendant de nombreuses années. Les personnes dialysées vieillissent avec ce traitement et acquièrent avec l'âge des comorbidités parfois sévères et chroniques. Dans certains cas, l'état clinique est tellement altéré que le démarrage de la dialyse ou sa poursuite peuvent être discutés. Parfois, la dialyse peut même être considérée comme de l'obstination déraisonnable. Or, son interruption a pour conséquence la mort dans un délai fluctuant avec des symptômes très variés, dépendants de la diurèse résiduelle, des comorbidités, de l'état nutritionnel, etc. Le temps long qui caractérise la prise en charge de la MRC, et particulièrement la dialyse, doit permettre un cheminement et le recul nécessaires vers une adaptation raisonnée des thérapeutiques (ART en néphrologie), qui est l'objet de ce guide. Celui-ci comporte des situations cliniques qui servent de repères aux soignants dans leur pratique, des encadrés qui soulignent les principaux messages et préconisations, ainsi qu'un volet « Francophonie ¼ qui élargit la réflexion aux pays francophones où la législation de la fin de vie peut différer de celle de la France.

Evaluation of an end-of-life teaching programme for unregistered domiciliary care staff.

BACKGROUND: With increased focus on people being supported to die at home, and increased numbers of people predicted to die in the coming years in the UK, it is recognised that domiciliary carers need to be trained and supported to give end-of-life care. Recent reports suggest that this is not happening. AIM: To introduce and evaluate a training programme to upskill unregulated domiciliary care agency staff and integrate them into the palliative care teams, supporting registered nurses in caring for end-of-life patients. METHOD: A training course was devised and implemented. This report covers the first 3 years of running the course, and evaluates the difference that it made to the first 210 recipients' ability and confidence in delivering end-of-life care, using a mixed-methods approach. RESULTS: Pre- and post-course confidence questionnaires, evaluations, post-course testimonials, and managers' comments all identified improvements in knowledge, skills and attitudes following training. Agency policies were re-written with up-to-date guidance on how to respond to death in the community. CONCLUSION: This article demonstrates that this model is effective in achieving its aims.

Small Steps, Big Vision: using multi-stage qualitative research to develop a grab-and-go guide to support utilisation of the Ambitions for Palliative and End of Life Care framework.

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.