High early mortality after percutaneous liver biopsy in metastatic cancer: national analysis.

OBJECTIVE: The study aimed to assess outcomes in patients undergoing liver biopsy for metastatic cancer, focusing on mortality rates and chemotherapy following their biopsy. METHODS: Hospital Episode Statistics data from 2010 to 2019 identified 30 992 patients with metastatic cancer who underwent percutaneous liver biopsy. Primary outcomes included 14-day and 30-day mortality rates, as well as the proportion receiving chemotherapy within 6 months. RESULTS: 30 992 patients were studied (median age of 69 (IQR 59-74) years, 52% female). 28% underwent inpatient biopsy with 8% dying within 14 days and 26% within 30 days. Outpatient biopsies had lower mortality rates: 2.2% at 14 days and 8.6% at 30 days.30-day mortality was associated with: inpatient biopsy (OR 3.5 (95% CI 3.26 to 3.76)) and increasing comorbidity (Charlson score 1-4: 1.21 (95% CI 1.11 to 1.32)); but negatively with all ages under 70 (eg, for 18-29 years 0.35 (95% CI 0.20 to 0.63)) and biopsy at a radiotherapy centre (0.88 (95% CI 0.82 to 0.95)).46% of patients received chemotherapy within 6 months of biopsy (53% with outpatient biopsies but only 33% with inpatient biopsies). Receiving chemotherapy was associated with: all ages under 70 (eg, 18-29 years 3.3 (95% CI 2.62 to 5.30)), female sex (1.06 (95% CI 1.01 to 1.11)) and medium (1.13 (95% CI 1.04 to 1.22) and high (1.49 (95% CI 1.38 to 1.62)) volume liver biopsy providers; but negatively with inpatient biopsy (0.45 (95% CI 0.43 to 0.48)) and increasing comorbidity (Charlson score 1-4: 0.85 (95% CI 0.79 to 0.91)). CONCLUSIONS: Mortality rates following liver biopsy for metastatic cancer are notably higher among patients undergoing emergency inpatient procedures. Clinicians should carefully weigh the risks and benefits of biopsy in elderly, comorbid or poor performance status patients. Multidisciplinary approaches involving palliative care may aid in decision-making for these patients.

Reducing Racial Disparities at End-of-life: Using Narratives to Build Trust and Promote advance Care Planning.

Black Americans are less likely than White Americans to have advance directives, die while receiving hospice services, or have their end-of life wishes honored. The root causes of disparities include imbalance of resources, lack of trust in health care institutions, lack of adequate education regarding end-of-life options, communication differences of health care providers with black vs white patients, variable access to hospice services in different communities, and poorer pain management for Black patients compared to White patients. Because root causes are numerous, comprehensive solutions are required. When advance care planning is in place, people are more likely to choose care focused on priorities and comfort than on seeking aggressive, sometimes futile, interventions in the last weeks of life. One important component of the solution should include listening to narrative stories of Black people as they encounter life-limiting diagnoses. Gathering the stories about life events and how strength was found through adversities can be a tool for growing trusting relationships and engaging in shared decision-making. Health care professionals should invite Black patients with serious illnesses to explore the sources of their strengths and identify their core values to work toward developing directives for the nature and place of their end-of-life and help to mitigate disparities in high quality end-of-life care.

Spiritual Care in Palliative Medicine and End of Life: A Bibliometric Network Analysis.

Background and Objectives: Spiritual care is an essential component of care for the terminally ill, because of its potential to positively impact patient perception of quality of life and dignity. However, it continues to be the least cultivated or even most overlooked aspect of palliative care and end of life. We performed a methodological review using bibliometric analysis to provide a holistic view of the scientific output published on this topic in the literature at the same time outlining present perspectives and research trends. Methods: In accordance with the BIBLIO checklist for reporting the bibliometric reviews of the biomedical literature, pertinent articles were retrieved from the Web of Science (WOS) database. The search string included "spiritual care," "end of life," and their synonyms. The VOSviewer (version 1.6.17) software was used to conduct comprehensive analyses. Semantic and research networks, bibliographic coupling, and journal analysis were examined. Results: A total of 924 articles were identified in WOS, and 842 were retrieved. An increasing trend in the number of publications is observed from 1981 to date, with a peak in the 2019-2021 timeframe. Most articles focused on palliative care, spirituality, spiritual care, religion, end of life, and cancer. The Journal of Pain and Symptom Management contributed the highest number of published documents, while the Journal of Palliative Medicine was the top-cited journal. The highest number of publications originated from collaborations of authors from the United Kingdom, the United States, and Australia. Conclusion: The remarkable increase in the number of publications on spiritual care observed in the years of the COVID-19 pandemic likely reflected global concerns, reasserting the importance of prioritizing spiritual care for whole-person palliation. Spiritual care is integrated with palliative care, in line with the latter's holistic nature and the recognition of spirituality as a fundamental aspect of end-of-life care. Nurses and chaplains exhibited more involvement in palliative-spiritual care than physicians reflecting the belief that chaplains are perceived as specialized providers, and nurses, owing to their direct exposure to spiritual suffering and ethos, are deemed suitable for providing spiritual care.

Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions.

CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE: To examine hospital performance on EOL quality measures and to describe healthcare services during the last two years of life for children with CCCs who died in-hospital. METHODS: Retrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020-March 2023 at a single quaternary U.S. children's hospital. Quality was assessed based on performance on 15 measures across 5 domains: healthcare utilization, interprofessional supports, medical intensity, symptom management, and communication. Quality EOL care and healthcare services in the last two years of life were determined overall by age group and per patient. Descriptive statistics were used to evaluate demographic differences by age. RESULTS: 266 children with CCCs died in the study timeframe; 45% were infants (n=120), 52% (n=137) were male, 42% (n=113) were white, 64% (n=170) were non-Hispanic, and 59% (n=156) had public insurance. Children had a median of 3 CCCs (IQR 2.4; range 1-8). On average, children met 69% (SD 13%) of EOL quality measures for which they were eligible. In the 2 years prior to death, 98% (n=261) had an ICU admission, 75% (n=200) had a procedure requiring sedation, and 29% (n=79) had received cardiopulmonary resuscitation. 86% (n=229) died in the ICU. CONCLUSION: In this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last 2 years of life.

Factors Associated with Patient-Caregiver Concordance about Life-Sustaining Treatment Preferences among Advanced Cancer Patients: A Cross-Sectional Study.

OBJECTIVES: Concordance of preferences for end-of-life care regarding patients between patients with advanced cancer and family caregivers can improve the likelihood of honoring dying patients' wishes. However, there is a dearth of knowledge in mainland China. The purpose of this study was to examine patient-family caregiver concordance about patients' life-sustaining treatment preferences and associated factors among patients with advanced cancer in China. METHODS: From September 2019 to December 2021, a convenience sample of 406 dyads of advanced cancer patient-family caregiver were recruited from 2 tertiary hospitals in Wuhan, China. Participants completed a questionnaire about patient's preferences for life-sustaining treatment, respectively. The concordance was assessed by percent agreement and kappa coefficients. Associated factors were identified by univariate analysis and binary logistic regression. RESULTS: The average concordance rate on the preferences for life-sustaining treatment was 56.1%, ranging from 52.9% to 59.3%. Factors associated with a higher level of patient-family caregiver concordance were following: patients who were married, whose educational levels were at college or above, who had not been informed of diagnosis by a physician, who had been informed of the effects and side effects of related drugs by a physician, and who cared for a seriously ill family member or friend and caregivers whose educational level were primary or below. CONCLUSIONS: The patient-family caregiver concordance about patients' life-sustaining treatment preferences among patients with advanced cancer was poor. Patients' and caregivers' understanding of life-sustaining treatment and its efficacy in end-of-life should be facilitated. Relevant conversation should be encouraged between patients and caregivers, thus providing value-concordant end-of-life care for patients with cancer. IMPLICATIONS FOR NURSING PRACTICE: Health professionals need to carry out advanced care planning in oncology departments on mainland China to encourage patients and caregivers to discuss patients' end-of-life care preferences. Facilitating patients' and caregivers' understanding of life-sustaining treatment preferences may help improve the patient-caregiver concordance on life-sustaining treatment preferences among patients with advanced cancer.

Palliative Care and Noninvasive Ventilation.

Palliative care is important for many patients who require noninvasive ventilation. The particular needs of patients with neuromuscular disease and chronic obstructive pulmonary disease are explored. Advance care planning is explored with tips for undertaking this important communication task. Brief comments regarding symptom burden, weaning, voluntary assisted dying, and self-care are included.

A systematic review of symptoms experienced by children and young people with kidney failure.

BACKGROUND: Kidney failure at any age has a significant impact on quality of life (QoL) but the overall symptom burden for children and young people (CYP) is poorly described. Kidney failure has no cure and whilst transplantation is the preferred management option, it is not always possible, with patients requiring supportive care at the end of their lives. AIM: To use the literature to understand the symptom burden for CYP with kidney failure who are approaching end-of-life. METHODS: Using three databases, a systematic literature review was performed to identify eligible studies to extract data on symptoms experienced in CYP aged < 21 years with kidney failure. Data extraction was completed by two authors using a pre-designed proforma. Study quality assessment was undertaken using the BMJ AXIS tool. RESULTS: A total of 20,003 titles were screened to yielding 35 eligible studies including 2,862 CYP with chronic kidney disease (CKD), of whom 1,624 (57%) had CKD stage 5. The studies included a median of 30 (range 7-241) patients. Symptoms were subcategorised into eight groups: sleep, mental health, gastrointestinal, dermatology, ear, nose and throat (ENT), neurology, multiple symptoms, and ophthalmology. The prevalences of the most commonly reported symptoms were: restless leg syndrome 16.7-45%, sleep disordered breathing 20-46%, hypersomnia 14.3-60%, depression 12.5-67%, anxiety 5.3-34%, overall gastrointestinal symptoms 43-82.6%, nausea and vomiting 15.8-68.4%, abdominal pain 10.5-67.4%, altered appetite or anorexia 19-90%, xerosis 53.5-100%, pruritis 18.6-69%, headache 24-76.2% and ophthalmological symptoms 26%. Within each subgroup, the symptom definitions used were heterogeneous, the methods of assessment were varied and some symptoms, such as pain and constipation, were poorly represented. CONCLUSIONS: There is a marked lack of evidence relating to the symptom burden for CYP with CKD. This study highlights the high symptom prevalence, particularly in relation to sleep, mental health, headache, dermatological and gastrointestinal symptoms. There is a need for consensus recommendations on the evaluation and management of symptoms for CYP with CKD approaching end-of-life. PROSPERO ID: CRD42022346120.

A window of opportunity for ICU end-of-life care-A retrospective multicenter cohort study.

BACKGROUND: The "window of opportunity" for intensive care staff to deliver end-of-life (EOL) care lies in the timeframe from "documenting the diagnosis of dying" to death. Diagnosing the dying can be a challenging task in the ICU. We aimed to describe the trajectories for dying patients in Danish intensive care units (ICUs) and to examine whether physicians document that patients are dying in time to perform EOL care and, if so, when a window of opportunity for EOL care exists. METHODS: From the Danish Intensive Care Database, we identified patients ≥18 years old admitted to Danish ICUs between January and December 2020 with an ICU stay of >96 h (four days) and who died during the ICU stay or within 7 days after ICU discharge. A chart review was performed on 250 consecutive patients admitted from January 1, 2020, to ICUs in the Central Denmark Region. RESULTS: In most charts (223 [89%]), it was documented that the patient was dying. Of those patients who received mechanical ventilation, 171 (68%) died after abrupt discontinuation of mechanical ventilation, and 63 (25%) died after gradual withdrawal. Patients whose mechanical ventilation was discontinued abruptly died after a median of 1 h (interquartile range [IQR]: 0-15) and 5 h (IQR: 2-15) after a diagnosis of dying was recorded. In contrast, patients with a gradual withdrawal died after a median of 108 h (IQR: 71-189) and 22 h (IQR: 5-67) after a diagnosis of dying was recorded. CONCLUSIONS: EOL care hinges on the ability to diagnose the dying. This study shows that there is a window of opportunity for EOL care, particularly for patients who are weaned from mechanical ventilation. This highlights the importance of intensifying efforts to address EOL care requirements for ICU patients and those discharged from ICUs who are not eligible for readmission.

Understanding the Behavioral Health Needs of Hospice Patients and Their Family Caregivers: Perspectives of Hospice Medical Directors.

BACKGROUND: Behavioral health disorders are common among patients and caregivers in the hospice setting. Yet, limited data exist regarding what hospice providers perceive as the most common and challenging behavioral health disorders they encounter and how they manage these issues in practice. OBJECTIVE: To characterize the perspectives of hospice medical directors (HMDs) on addressing the behavioral health challenges when caring for patients enrolled in home hospice care and their family caregivers. METHODS: Semistructured interviews with seventeen certified HMDs were conducted. Data were analyzed using thematic analysis. RESULTS: Many HMDs agreed that delivering high-quality behavioral health care is a tenet for good end-of-life (EoL) care. HMDs shared that depression and anxiety were the most common behavioral health challenges they encountered, while among caregivers, substance use disorder was the most challenging. Participants mentioned that nurses and social workers played a vital role in detecting and managing behavioral health problems. HMDs also stated that providing additional training for frontline staff and incorporating behavioral health experts are potential solutions to help address current challenges. CONCLUSION: HMDs emphasized the importance of addressing behavioral health challenges among patients and caregivers to provide effective end-of-life care. Future studies should examine the viewpoints of additional key stakeholder groups (e.g., hospice interdisciplinary team members, family caregivers) and confirm them in quantitative studies. Designing and implementing evidence-based assessments and interventions to improve behavioral health care by addressing anxiety, depression, and caregiver substance use disorders is essential to improving care and care outcomes in the hospice setting.

Factors associated with the place of death of persons with advanced dementia: A systematic review of international literature with meta-analysis.

BACKGROUND: Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence. AIM: To identify factors influencing where people with advanced dementia die. DESIGN AND DATA SOURCES: This systematic review with meta-analysis was registered on PROSPERO (CRD42022366722). Medline, CINAHL, PsycINFO, SocINDEX and a grey literature database, Overton, were searched on 21/12/2022, supplemented by hand-searching/citation tracking. Papers reporting quantitative data on factors associated with place of death in advanced dementia were included and appraised using QualSyst. Data were analysed using random effects with the certainty of evidence determined using the GRADE criteria. RESULTS: Thirty-three papers involving >5 million individuals (mean age = 89.2 years) were included. Long-term care setting deaths were relatively common but hospice deaths were rarer. Marriage's association with home death underscores social networks' importance, while younger age's and male gender's associations with hospital death demonstrate patients' and families' interdependency. Pneumonia/COPD's opposing effects on hospital deaths with cancer/functional impairment highlight the challenges of advanced dementia care. Unlike hospital/nursing home bed availability's lack of effect, capitated funding (fixed-amount-per-patient-per-period) decreased hospital death likelihood. CONCLUSION: This comprehensive review of place of death determinants highlight the profound challenges of advanced dementia end-of-life care. Given that bed capacity did not affect place of death, a capitation-based, integrated palliative care model would appear more likely to meet patients' needs in a resource-constrained environment.

Did the Palliative Care Outcomes Collaboration (PCOC) program lead to improved end-of-life care quality and reduced non-beneficial treatments?

PURPOSE: Palliative Care Outcomes Collaboration (PCOC) is an internationally recognized program developed in Australia. Taiwan became the first country in Asia to implement PCOC in 2020. There is little research on the impact of PCOC in Asia. We sought to examine the effects of the Taiwan PCOC on palliative outcomes. METHODS: The study analyzed the impact of PCOC with a retrospective cohort design. The hypotheses were that PCOC could improve end-of-life care quality and reduce non-beneficial treatments. The study enrolled patients with terminal illnesses from the inpatient palliative care units. General characteristics of participants were collected. Exclusion criteria were people without a diagnosis of terminal illness, aged 20 and younger, or with missing data. RESULTS: The study collected 1,121 patients, 555 in the PCOC comparison group and 566 in the intervention group. Most patients were with terminal cancer (88.58%). The rates of hospital deaths in the PCOC and non-PCOC groups were 68.73% vs. 74.95% (P = 0.021). A multivariable logistic regression model, adjusting for age, sex, Charlson comorbidity index, and terminal cancer status, was utilized. The PCOC intervention significantly decreased hospital deaths (OR = 0.26, 95%CI 0. 16-0.41, P < 0.001). CONCLUSIONS: PCOC in Taiwan significantly reduced hospital deaths among terminal patients, possibly due to effective symptom management and improved communication via the use of patient-reported outcomes. Further research is needed to support PCOC implementation in Asia and investigate collaboration programs' impact on end-of-life care quality and non-beneficial treatments.

"How long is life worth living for the horse?" A focus group study on how Austrian equine stakeholders assess quality of life for chronically ill or old horses.

BACKGROUND: Quality of life (QoL) provides a comprehensive concept underpinning veterinary decision-making that encompasses factors beyond physical health. It becomes particularly pertinent when seeking responsible choices for chronically ill or old horses that emphasise their well-being and a good QoL over the extension of life. How different stakeholders use the concept of QoL is highly relevant when considering the complexity of these decisions in real-life situations. METHODS: Seven focus group discussions (N = 39) were conducted to gain insights into how stakeholders assess and use equine QoL in veterinary care decisions for chronically ill and/or old horses. The discussions included horse owners (n = 17), equine veterinarians (n = 7), veterinary officers (n = 6), farriers (n = 4), and horse caregivers (n = 5). The combination of deductive and inductive qualitative content analysis of the group discussions focused on identifying both similarities and differences in the views of these groups regarding QoL for old and/or chronically ill horses. RESULTS: Findings show agreement about two issues: the importance of the individuality of the horse for assessing QoL and the relevance of QoL in making decisions about veterinary interventions. We identified differences between the groups with respect to three issues: the time required to assess QoL, stakeholders' contributions to QoL assessments, and challenges resulting from those contributions. While owners and caregivers of horses emphasised their knowledge of a horse and the relevance of the time they spend with their horse, the veterinarians in the study focused on the differences between their own QoL assessments and those of horse owners. In response to challenges regarding QoL assessments and decision-making, stakeholders described different strategies such as drawing comparisons to human experiences. CONCLUSIONS: Differences between stakeholders regarding equine QoL assessments contribute to challenges when making decisions about the care of chronically ill or old horses. The results of this study suggest that individual and collaborative reflection about a horse's QoL should be encouraged, for example by developing practicable QoL assessment tools that support relevant stakeholders in this process.

Care conundrum in the emergency department: The gap between clinician awareness and patient expectations surrounding advance directives.

OBJECTIVES: Clinicians in the emergency department (ED) frequently encounter seriously ill patients at a time when advance directives may be pivotal in improved clinician decision-making. The objectives of this study were to identify the prevalence of advanced directives in ED patients, as well as patterns of advance care discussions between patients and providers. This study describes patients' perceptions and expectations of such serious illness discussions in an emergency care setting with the expectation of including patients as strategic members of the care team. METHODS: Trained research assistants in two emergency departments surveyed patients over age 65, or their caregivers, from July 2016 to August 2018. Patients were verbally administered a standard survey tool related to advance directives and advance care planning. RESULTS: 497 out of 877 patients completed surveys (59.4%). 50% of patients reported having an advance care planning document. The large majority (92%) of patients with an advance directive had not been asked about it during their ED visit. When questioned about their personal preferences, 79% of patients thought emergency physicians should be aware of their wishes regarding life-sustaining treatments and end-of-life care. Paradoxically, only 38% expressed a desire to discuss advance care plans with an ED clinician. CONCLUSIONS: Older patients expect emergency clinicians to be aware of their care preferences, yet most are not asked about these care preferences in the ED. The large gap between patient preference and reality suggests the need for more targeted discussion by ED clinicians and translation of patient perspectives into system healthcare improvements. Future studies should explore barriers to advance care planning in the ED as well as patient preferences for these conversations to support a true healthcare learning system.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

Mortality in Innu communities in Labrador, 1993-2018: a cross-sectional study of causes and location of death.

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.

Palliative care for patients with heart failure and family caregivers in rural Appalachia: a randomized controlled trial.

BACKGROUND: Heart failure (HF) is a debilitating disease with worsening symptoms and family caregiving burden. HF affects more than 8 million Americans. West Virginia has the highest HF death rate in the U.S. and limited healthcare services. This study tested whether the family HF palliative and end-of-life care intervention (FamPALcare) improved patient and caregiver outcomes at 3- and 6-month study endpoints. METHODS: This study used a randomized controlled trial design. Patients with HF and their caregivers were randomly assigned together to the intervention (n = 21) or control (n = 18) group. The intervention included five telephone coaching sessions on the HF home, palliative, and end-of-life care. The outcome data collected at baseline and at 3 and 6 months were from the patients' (a) HF-related health status and depression/anxiety scale scores; and from caregivers' (b) caregiving burden and depression/anxiety scale scores; and (c) anonymous ratings on the 11-item FamPALcare helpfulness scale, completed by the intervention participants. RESULTS: The mean age of the patients was 65.66 (SD = 13.72) years, and 67% were White males. The mean age of the caregivers was 62.05 (SD = 13.14) years, and 77% were White females. Compared to the controls, patients in the intervention group had significantly greater scores for HF-related health status (p < .05) and lower depression/anxiety scores at 6 months, the study endpoint. The family caregivers in the intervention group had significantly lower scores on caregiving burden (p < .05) and depression/anxiety (p < .01) at 3 months. The mean helpfulness rating was M = 4.46 out of 5 (SD = 0.49). CONCLUSIONS: The FamPALcare intervention was found to be effective at improving patient HF-related health status and reducing caregiver burden and improving both patient and caregiver depression and anxiety scores. The FamPALcare HF intervention was found feasible and consistently delivered (fidelity). The FamPALcare intervention's cost-effectiveness and helpfulness ratings information will be used to plan for subsequent clinical trials. TRIAL REGISTRATION: ClinicalTrials.gov NCT04153890, Registered on 4 November 2019, https://clinicaltrials.gov/ct2/show/NCT04153890 .

Mid-Atlantic primary care providers' perception of barriers and facilitators to end-of-life conversation.

Background: Among the chronically ill, end-of-life conversations are often delayed until emergently necessary and the quality of those conversations and subsequent decision-making become compromised by critical illness, uncertainty, and anxiety. Many patients receive treatment that they would have declined if they had a better understanding of benefits and risks. Primary care providers are ideal people to facilitate end-of-life conversations, but these conversations rarely occur in the out-patient setting. Objective: To investigate the self-reported experiences of physicians and advanced practice nurses with conversational barriers and facilitators while leading end-of-life discussions in the primary care setting. Design: A qualitative descriptive study. Methods: Six physicians and eight advanced practice nurses participated in singular semi-structured interviews. Results were analyzed using a qualitative descriptive design and content analysis approach to coding. Results: Reported barriers in descending order included resistance from patients and families, insufficient time, and insufficient understanding of prognosis and associated expectations. Reported facilitators in descending order included established trusting relationship with provider, physical and/or cognitive decline and poor prognosis; and discussion standardization per Medicare guidelines. Conclusion: Recommendations for improving the end-of-life conversational process in the primary care setting include further research regarding end-of-life conversational facilitators within families, the improvement of patient/family education about hospice/palliative care resources and examining the feasibility of longer appointment allotment.1.

'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

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

A palliative care approach for adult non-cancer patients with life-limiting illnesses is cost-saving or cost-neutral: a systematic review of RCTs.

BACKGROUND: Patients living with life-limiting illnesses other than cancer constitute the majority of patients in need of palliative care globally, yet most previous systematic reviews of the cost impact of palliative care have not exclusively focused on this population. Reviews that tangentially looked at non-cancer patients found inconclusive evidence. Randomised controlled trials (RCTs) are the gold standard for treatment efficacy, while total health care costs offer a comprehensive measure of resource use. In the sole review of RCTs for non-cancer patients, palliative care reduced hospitalisations and emergency department visits but its effect on total health care costs was not assessed. The aim of this study is to review RCTs to determine the difference in costs between a palliative care approach and usual care in adult non-cancer patients with a life-limiting illness. METHODS: A systematic review using a narrative synthesis approach. The protocol was registered with PROSPERO prospectively (no. CRD42020191082). Eight databases were searched: Medline, CINAHL, EconLit, EMBASE, TRIP database, NHS Evidence, Cochrane Library, and Web of Science from inception to January 2023. Inclusion criteria were: English or German; randomised controlled trials (RCTs); adult non-cancer patients (> 18 years); palliative care provision; a comparator group of standard or usual care. Quality of studies was assessed using Drummond's checklist for assessing economic evaluations. RESULTS: Seven RCTs were included and examined the following diseases: neurological (3), heart failure (2), AIDS (1) and mixed (1). The majority (6/7) were home-based interventions. All studies were either cost-saving (3/7) or cost-neutral (4/7); and four had improved outcomes for patients or carers and three no change in outcomes. CONCLUSIONS: In a non-cancer population, this is the first systematic review of RCTs that has demonstrated a palliative care approach is cost-saving or at least cost-neutral. Cost savings are achieved without worsening outcomes for patients and carers. These findings lend support to calls to increase palliative care provision globally.