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BACKGROUND: Patients with limited English proficiency (LEP) may have worse health outcomes and differences in processes of care. Language status may particularly affect situations that depend on communication, such as symptom management or end-of-life (EOL) care. OBJECTIVE: The objective of this study was to assess whether opioid prescribing and administration differs by English proficiency (EP) status among hospitalized patients receiving EOL care. METHODS: This single-center retrospective study identified all adult patients receiving comfort care on the general medicine service from January 2013 to September 2021. We assessed for differences in the quantity of opioids administered (measured by oral morphine equivalents [OME]) by patient LEP status using multivariable linear regression, controlling for other patient and medical factors. RESULTS: We identified 2652 patients receiving comfort care at our institution during the time period, of whom 1813 (68%) died during the hospitalization. There were no significant differences by LEP status in terms of mean OME per day (LEP received 30.8 fewer OME compared to EP, p = .91) or in the final 24 h before discharge (LEP received 61.7 more OME compared to EP, p = .80). CONCLUSION: LEP was not associated with differences in the amount of opioids received for patients whose EOL management involved standardized order sets for symptom management at our hospital.

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the persons capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

CONTEXT: Parkinsons disease and related disorders (PDRD) are fatal neurodegenerative disorders characterized by a fluctuating course that can complicate prognostication. The surprise question (SQ: Would you be surprised if your patient died in the next year?) has been used to identify patients with limited prognosis but has not been assessed in PDRD. OBJECTIVES: To determine the validity of the SQ in predicting 12-month mortality in PDRD. METHODS: Data was analyzed from 301 patients and 34 community-based neurologists who were participating in a clinical trial of outpatient palliative care for patients with PDRD. Clinicians answered the SQ for each patient at baseline. Descriptive statistics at baseline, chi-square tests of independence, 2 × 2 and 2 × 3 cross tables were used. Survival analysis compared SQ responses using Kaplan-Meier curves. Risk estimate analyses identified patient characteristics associated with clinicians responses. RESULTS: Mortality was 10.3% (N = 31) at 1 year. The sensitivity and specificity of the SQ was 80.7% and 58.9%, respectively with AUC = 0.70, positive predictive value of 18.4% and negative predictive value of 96.4%. Older age, atypical parkinsonism, and dementia were associated with responding no to the SQ. CONCLUSION: The SQ is sensitive to 12-month mortality in PDRD, with a high negative predictive value. The SQ may be useful for identifying patients less likely to die within a year and may be useful for identifying patients with palliative care needs outside of end-of-life care. This latter use may assist in mobilizing early and timely referral to specialist palliative care.

Background: French laws governing end-of-life medical practices forbid euthanasia and affirm patients' right to deep and continuous sedation until death. Cultural traditions and disparities in health care provision, as in overseas France, could limit the enforcement of such laws and modify end-of-life medical practices. Aim: This research aims to describe end-of-life medical decisions in overseas France and to compare with those described in mainland France. Methods: A retrospective study of a random sample of adult patients who died between March 2020 and February 2021 was conducted in four overseas French departments. Physicians who certified the deaths were asked to describe end-of-life care and medical decisions in a questionnaire. Results: A total of 1815 deaths were analysed over 8730 questionnaires sent. Withholding treatments was the most frequent decision (41%), treatment for pain or symptoms was intensified for a third of patients, Deep and continuous sedation until death was implemented in 13.3% cases. The use of drugs to deliberately end life was mentioned in 1.3% deaths. At least one decision was made in 61.6% deaths. More decisions that may hasten death were made before predictable deaths. Intensification of pain and symptoms treatment was more frequent in 2022 than in 2010. Deep and continuous sedation was introduced by law in 2016 without prejudice to other decisions. Conclusion: Physicians in overseas France have implemented recent changes in end-of-life laws, including deep and continuous sedation. Comparisons with 2010 mainland France survey show a better implementation of palliative medicine in 2022, with higher proportions of treatment withholding. [ABSTRACT FROM AUTHOR]

Background: While home is frequently expressed as the favorite place of death (PoD) among terminally ill cancer patients, various factors affect the fulfillment of this wish. The determinants of the PoD of cancer patients in countries without healthcare system-integrated palliative and supportive care have not been studied before. This study aimed at identifying the predictors of the PoD of patients who suffer from advanced cancer by developing a reliable predictive model among who received home-based palliative care in Iran as a representative of the countries with isolated provision of palliative care services. Methods: In a cross-sectional study, electronic records of 4083 advanced cancer patients enrolled in the Iranian Cancer Control Center (MACSA) palliative homecare program, who died between February 2018 and February 2020 were retrieved. Multivariable binary logistic regression analysis as well as subgroup analyses (location, sex, marital status, and tumor topography) was performed to identify the predictors of PoD. Results: Of the 2398 cases included (mean age (SD) = 64.17 (14.45) year, 1269 (%52.9) male), 1216 (50.7%) patients died at home. Older age, presence and intensity of medical homecare in the last two weeks and registration in the Tehran site of the program were associated with dying at home (P < 0.05). Gynecological or hematological cancers, presence and intensity of the calls received from the remote palliative care unit in the last two weeks were predictors of death at the hospital (p < 0.05). The model was internally and externally validated (AUC = 0.723 (95% CI = 0.702–0.745; P < 0.001) and AUC = 0.697 (95% CI = 0.631–0.763; P < 0.001) respectively). Conclusion: Our model highlights the demographic, illness-related and environmental determinants of the PoD in communities with patchy provision of palliative care. It also urges policymakers and service providers to identify and take the local determinant of the place of death into account to match the goals of palliative and supportive services with the patient preferences. [ABSTRACT FROM AUTHOR]

Background: The care of patient individuals in the good death process should be planned based on nursing values. The aim of the study is to determine nurses' perceptions of a good death and its relationship with nursing values. Methods: The study is descriptive and cross-sectional and was completed with 210 nurses. Data were collected using the Nurse Information Form, Good Death Scale, and Revised Nursing Professional Values Scale. In the study, an attempt was made to reach nurses across Türkiye over a three-month period using the snowball sampling method without calculating the sample size beforehand. Descriptive statistics, Kruskal Wallis and Mann Whitney U test, LSD test, Spearman correlation and linear regression analyzes were used in the study. Results: The nurses' Good Death Scale total mean score was 53.52 ± 7.11, and The Revised Nursing Professional Values Scale mean score was 97.77 ± 15.71. There was a moderate, positive, statistically significant relationship between the nurses' Good Death Scale total mean scores and the Revised Nursing Professional Values Scale total mean scores (r = 0.522; p < 0.001). Conclusions: Value-based educational activities may be effective in helping nurses have positive perceptions about a good death. [ABSTRACT FROM AUTHOR]

Introduction: Ciltacabtagene autoleucel (cilta-cel) is a chimeric antigen receptor T-cell therapy approved for patients with relapsed/refractory multiple myeloma (RRMM). In the phase 3 trial, CARTITUDE-4 (NCT04181827), cilta-cel demonstrated improved efficacy vs. standard of care (SOC; daratumumab plus pomalidomide and dexamethasone [DPd] or pomalidomide plus bortezomib and dexamethasone [PVd]) with a ≥ complete response (≥CR) rate of 73.1% vs. 21.8%. Methods: A cost-per-responder model was developed to assess the value of cilta-cel and SOC (87% DPd and 13% PVd) based on the CARTITUDE-4 trial data from a US mixed payer perspective (76.7% commercial, 23.3% Medicare). The model was developed using progression-free survival (PFS), overall survival (OS), and ≥CR endpoints from CARTITUDE-4 over a period of 25.4 months. Inpatient stays, outpatient visits, drug acquisition, administration, and monitoring costs were included. The base-case model assumed an inpatient setting for each cilta-cel infusion; another scenario included 30% outpatient and 70% inpatient infusions. Costs of managing grade 3-4 adverse events (AEs) and grade 1-4 cytokine release syndrome and neurotoxicity were included. Subsequent therapy costs were incurred after disease progression; terminal care costs were considered upon death events. Outcomes included total cost per treated patient, total cost per complete responder, and cost per month in PFS between cilta-cel and SOC. Costs were adjusted to 2024 US dollars. Results: Total cost per treated patient, total cost per complete responder, and total cost per month in PFS were estimated at $704,641, $963,941, and $30,978 for cilta-cel, respectively, and $840,730, $3,856,559, and $42,520 for SOC over the 25.4-month period. Cost drivers included treatment acquisition costs before progression and subsequent treatment costs ($451,318 and $111,637 for cilta-cel; $529,795 and $265,167 for SOC). A scenario analysis in which 30% of patients received an outpatient infusion (assuming the same payer mix) showed a lower cost per complete responder for cilta-cel ($956,523) than those with an infusion in the inpatient setting exclusively. Discussion: This analysis estimated that cost per treated patient, cost per complete responder, and cost per month in PFS for cilta-cel were remarkably lower than for DPd or PVd, highlighting the substantial clinical and economic benefit of cilta-cel for patients with RRMM. [ABSTRACT FROM AUTHOR]

Purpose: Intensive care units (ICUs) have significant palliative care needs but lack a reliable care framework. This umbrella review addresses them by synthesising palliative care practices provided at end-of-life to critically ill patients and their families before, during, and after ICU admission. Methods: Seven databases were systematically searched for systematic reviews, and the umbrella review was conducted according to the guidelines laid out by the Joanna Briggs Institute (JBI). Results: Out of 3122 initial records identified, 40 systematic reviews were included in the synthesis. Six key themes were generated that reflect the palliative and end-of-life care practices in the ICUs and their outcomes. Effective communication and accurate prognostications enabled families to make informed decisions, cope with uncertainty, ease distress, and shorten ICU stays. Inter-team discussions and agreement on a plan are essential before discussing care goals. Recording care preferences prevents unnecessary end-of-life treatments. Exceptional end-of-life care should include symptom management, family support, hydration and nutrition optimisation, avoidance of unhelpful treatments, and bereavement support. Evaluating end-of-life care quality is critical and can be accomplished by seeking family feedback or conducting a survey. Conclusion: This umbrella review encapsulates current palliative care practices in ICUs, influencing patient and family outcomes and providing insights into developing an appropriate care framework for critically ill patients needing end-of-life care and their families. [ABSTRACT FROM AUTHOR]

Background: Modeled after the Physician Orders for Life Sustaining Treatment program, the Veterans Health Administration (VA) implemented the Life‐Sustaining Treatment (LST) Decisions Initiative to improve end‐of‐life outcomes by standardizing LST preference documentation for seriously ill Veterans. This study examined the associations between LST documentation and family evaluation of care in the final month of life for Veterans in VA nursing homes. Methods: Retrospective, cross‐sectional analysis of data for decedents in VA nursing homes between July 1, 2018 and January 31, 2020 (N = 14,575). Regression modeling generated odds for key end‐of‐life outcomes and family ratings of care quality. Results: LST preferences were documented for 12,928 (89%) of VA nursing home decedents. Contrary to our hypothesis, neither receipt of wanted medications and medical treatment (adjusted odds ratio [OR]: 0.85, 95% confidence interval [CI] 0.63, 1.16) nor ratings of overall care in the last month of life (adjusted OR: 0.96, 95% CI 0.76, 1.22) differed significantly between those with and without completed LST templates in adjusted analyses. Conclusions: Among Community Living Center (CLC) decedents, 89% had documented LST preferences. No significant differences were observed in family ratings of care between Veterans with and without documentation of LST preferences. Interventions aimed at improving family ratings of end‐of‐life care quality in CLCs should not target LST documentation in isolation of other factors associated with higher family ratings of end‐of‐life care quality. [ABSTRACT FROM AUTHOR]

Background: Racial and ethnic minorities often receive care at different hospitals than non‐Hispanic white patients, but how hospital characteristics influence the occurrence of disparities at the end of life is unknown. The aim of this study was to determine if disparities in end‐of‐life care were present among minoritized patients during terminal hospitalizations, and if these disparities varied with hospital characteristics. Methods: We identified hospitalizations where a patient died in New York State, 2016–2018. Using multilevel logistic regression, we examined whether documented end‐of‐life care (do‐not‐resuscitate status (DNR), palliative care (PC) encounter) differed by race and ethnicity, and whether these disparities differed based on receiving care in hospitals with varying characteristics (Black or Hispanic‐serving hospital; teaching status; bed size; and availability of specialty palliative care). Results: We identified 143,713 terminal hospitalizations in 188 hospitals. Across all hospitals, only Black patients were less likely to have a PC encounter (adjusted odds ratio (aOR) 0.83 [0.80–0.87]) or DNR status (aOR 0.91 [0.87–0.95]) when compared with non‐Hispanic White patients, while Hispanic patients were more likely to have DNR status (aOR 1.07 [1.01–1.13]). In non‐teaching hospitals, all minoritized groups had decreased odds of PC (aOR 0.80 [0.76–0.85] for Black, aOR 0.91 [0.85–0.98] for Hispanic, aOR 0.93 [0.88–0.98] for Others), while in teaching hospitals, only Black patients had a decreased likelihood of a PC encounter (aOR 0.88 [0.82–0.93]). Also, Black patients in a Black‐serving hospitals were less likely to have DNR status (aOR 0.80 [0.73–0.87]). Disparities did not differ based on whether specialty PC was available (p = 0.27 for PC encounter, p = 0.59 for DNR status). Conclusion: During terminal hospitalizations, Black patients were less likely than non‐Hispanic White patients to have documented end‐of‐life care. This disparity appears to be more pronounced in non‐teaching hospitals than in teaching hospitals. [ABSTRACT FROM AUTHOR]

LGBTQ+ people experience higher burdens of life-limiting illnesses, poorer health outcomes, and multilevel barriers to accessing palliative, end-of-life, and bereavement care. High quality evidence is needed to inform interventions to address these inequities, and inform inclusive practices and policies. Despite global initiatives to improve availability of peer-reviewed journal articles, the minority of research is open access (OA). We aimed to evaluate accessibility of literature related to LGBTQ+ inclusive palliative, end-of-life, and bereavement care. A rapid review of the evidence regarding LGBTQ+ inclusive palliative, end-of-life, and bereavement care was conducted; OA status of identified articles was assessed. Articles from three published systematic reviews were included (2012, 2016, and 2020). Review articles were updated using the original search and inclusion/exclusion strategies. 66 articles related to LGBTQ+ inclusive palliative, end-of-life and bereavement care were identified between 1990-2022. Of these, only 21% (n =14) were OA. Of the OA articles, 79% were published between 2017 and 2022, and 50% were published between 2020-2022, reflecting more recent shifts towards OA publishing. Health and social care professionals and policy makers rely on access to high quality evidence to inform their work. Failing to make articles related to the needs of LGBTQ+ people and populations OA risks further marginalisation and worsened inequities. Innovative journal policies and funding are needed to enable access, particularly for research that foregrounds the needs of marginalised communities. Where articles are currently behind paywalls, there is a need for accessible summaries or policy briefs to inform inclusive policy and practice. [ABSTRACT FROM AUTHOR]

Delirium is a significant concern in end-of-life care. Continuous monitoring of agitation levels using objective methods may have advantages over existing measurement scales. To examine whether an objective measure of activity scores measured using a sheet-type non-wearable sensor (Nemuri SCAN [NSCAN]) was correlated with agitation levels measured using the modified Richmond Agitation-Sedation Scale (RASS) in terminally ill patients with cancer. We conducted a single-center, prospective, observational study in a palliative care unit using the NSCAN to measure activity scores and the RASS to assess agitation levels. RASS scores were prospectively measured by ward nurses blinded to the NSCAN variables. A database was created to pair the RASS scores and activity scores at night on the same day. During the observation period, 1209 patients were hospitalized, and 3028 pairs of assessments of 971 patients were analyzed. The NSCAN activity scores significantly increased with increasing RASS scores (Jonckheere–Terpstra test, p < 0.001). The mean values of the activity scores for each RASS score were RASS −5, 28.9; RASS −4, 36.4; RASS −3, 41.7; RASS −2, 57.4; RASS −1, 58.8; RASS 0, 62.6; RASS 1, 79.6; RASS 2, 106.5; and RASS 3, 118.7. The NSCAN activity significantly correlated with modified RASS agitation scores. Real-time NSCAN data on agitation may aid timely interventions for optimal symptom control. To improve outcomes for patients suffering from terminal delirium, more research on monitoring tools is warranted. [ABSTRACT FROM AUTHOR]

As patients approach the end of life, discussion of their treatment goals is essential to avoid unnecessary suffering and deliver care in a manner consistent with their overall values. Implement a multipronged approach to improve the rates of advance care planning (ACP) documentation among providers admitting patients with cancer to the intensive care unit (ICU) from the emergency department (ED). We developed multiple interventions including the development of a best-practice advisory to alert providers when patients had previous do-not-resuscitate orders; standardization of ACP documentation; early oncologist involvement in goals-of-care conversations with patients; a survey of ED providers to identify barriers to success; and positive reinforcement strategies aimed at improving the rates of ACP documentation in patients admitted from the ED to the ICU. Prior to our interventions, only 13% of patients admitted to the ICU from the ED had ACP notes. This percentage increased to 90% by the last month of our project. Through our multipronged approach, we significantly improved the rates of ACP documentation among providers admitting patients from the ED to the ICU. [ABSTRACT FROM AUTHOR]

The article focuses on the effectiveness of the Preference-Aligned Communication and Treatment (PACT) project in increasing goals of care conversations for hospitalized patients. Topics include the impact on alignment between patient preferences and received care, reduced end-of-life resource use and costs, and the significant engagement of diverse healthcare staff in facilitating these conversations.

Progression of ill health and death trajectories is different for children with a non-oncology diagnosis. As previous research has focused primarily on children with cancer diagnoses, this scoping review explored what factors influence the parent and/or child's choice of place of death for a child with a non-oncological complex care condition, when death is expected. Eighteen papers were identified considering the preferred place of death. The findings were themed into 1. Diagnostic Factors; 2. Home Factors; 3. Socio-economic Factors; 4. Parent Factors. In conclusion, informed discussions with families that recognize the reason for, and the impact of their choices, are necessary not only for the preferred place of death but also end of life care. [ABSTRACT FROM AUTHOR]

With advances in medicine, HIV has evolved into a chronic condition for people living with HIV (PLWH). However, many PLWH do not engage in advance care planning (ACP), and it occurs primarily in acute situations. ACP may improve preparedness for end-of-life care and increase advance directive (AD) documentation. Searches of PubMed, PsycInfo, and CINHAL were conducted to synthesize current ACP-related randomized controlled trials on two separate populations: (1) PLWH and (2) older adults without HIV. Two articles met inclusion criteria for PLWH, and the intervention had a significant improvement in ACP engagement. For the latter population, thirteen of fourteen articles had interventions that led to statistically significant increases in ACP engagement. This review underscores the need to further investigate the best strategies to improve ACP among PLWH and provides insights from existing ACP interventions for the general population to be adapted to the needs of PLWH. [ABSTRACT FROM AUTHOR]

Quality of life has become a central value in the provision of healthcare for patients with chronic conditions. This has engendered debates in critical medical sociology on the non-neutral effects that valuing health and illness, medical interventions, and health care delivery in terms of quality of life yields. Focusing on the case of nephrology, this paper presents qualitative data collected in Austria of two dialysis units in which nephrologists initiated projects aimed towards 'the improvement of patients' quality of life'. Whereas the first involved nurses supporting patients in the administration of peritoneal dialysis at home, the second implied the provision of treatment and care exclusively focused on a well-being 'in the here and now' to patients. By conceptualising physicians as actors within networks of relations and values enacted in practices, it analyses how in both dialysis units reference to quality of life enabled nephrologists to problematise the provision of standard haemodialysis treatment to multi-morbid, elderly patients, to develop a new treatment protocol, and to interest and enrol others in the provision of healthcare according this new protocol. Valuing medical interventions in terms of quality of life not only leads to a governmentalization of living and an economisation of health. It also allows physicians to articulate a socio-medico-ethical problem – the availability of life-prolonging technologies for a growing population of elderly, multi-morbid patients – and develop solutions locally. What the solutions consist in may fundamentally differ, however. [ABSTRACT FROM AUTHOR]

Purpose: Oral alterations are frequently observed in patients undergoing palliative care and are linked to the direct or indirect effects of the primary medical condition, comorbidities and medical management, leading to oral pain, impacting oral intake, and affecting quality of life. This systematic review aims to assess the prevalence of oral disease in palliative care patients. Methods: The protocol was registered at the PROSPERO database, and a systematic review of the literature was performed based on the PRISMA statement. A thorough evaluation of studies from five databases and gray literature was conducted. The risk of bias in each study was assessed using the Joanna Briggs Institute checklist for cross-sectional and case-control studies. A quantitative analysis was conducted on five studies using meta-analysis, and the degree of certainty in the evidence was determined using the GRADE tool. Results: The sample consisted of 2,502 patients, with a slight male predominance (50.43%). The average age was 66.92 years. The prevalence of oral diseases among palliative care patients was as follows: caries 32% (95% CI, 0.11-0.56; I2 = 93%), and oral candidiasis 17% (95% CI,0.11-0.25; I2 = 74%). Gingivitis and stomatitis were also reported, but with less frequency. Conclusion: Dental intervention should take place as early as possible, ideally from the time of the patient's initial admission to palliative care, with regular monitoring of oral health. This approach can enhance the patient's comfort and quality of life and help prevent more severe complications in the future. [ABSTRACT FROM AUTHOR]

Objective: To explore district nurses' experiences in providing terminal care to patients and their families until death in a private home setting. Design, setting and subjects: Qualitative study. Data derived from focus group discussions with primary nurses in The Faroe Islands. Results: Four themes were identified: 'Challenges in providing terminal care', 'The importance of supporting families', 'Collaborative challenges in terminal care' and 'Differences between rural districts and urban districts'. The nurses felt that terminal care could be exhausting, but they also felt the task rewarding. Involving the family was experienced as a prerequisite for making home death possible. Good collaboration with the local GPs was crucial, and support from a palliative care team was experienced as helpful. They pointed out that changes of GP and the limited services from the palliative care team were challenging. Structural and economic conditions differed between urban and rural districts, which meant that the rural districts needed to make private arrangements regarding care during night hours, while the urban districts had care services around the clock. Conclusion: Our findings underline the complexity of terminal care. The nurses felt exhausted yet rewarded from being able to fulfil a patient's wish to die at home. Experience and intuition guided their practice. They emphasised that good collaboration with the GPs, the palliative care team and the families was important. Establishing an outgoing function for the palliative care team to support the nurses and the families would increase the scope for home deaths. Working conditions differed between rural and urban districts. KEY POINTS: District nurses are key providers of care for people dying in a home care setting. Collaboration with family is essential for making home death possible. Taking care of dying patients is experienced as exhausting but also meaningful. There is a need for an outgoing palliative care team to include all patients regardless of disease. [ABSTRACT FROM AUTHOR]

Registered nurses report the experience of delivering end of life care in emergency departments as challenging. The study aim was to understand what it is like to be a registered nurse providing end of life care to an older person in the emergency department. A hermeneutic phenomenological study was conducted in 2021, using semi-structured interviews with seven registered nurses across two hospital emergency departments in Queensland, Australia. Thematic analysis of participants' narratives was undertaken. Seven registered nurses were interviewed; six of whom were women. Participant's experience working in the emergency department setting ranged from 2.5–20 years. Two themes were developed through analysis: (i) Presenting the patient as a dying person; and (ii) Mentalising death in the context of the emergency department. Nurses providing end of life care in the emergency department draw upon their personal and aesthetic knowing to present the dying patient as a person. The way death is mentalised suggests the need to develop empirical knowing about ageing and supportive medical care and ethical knowing to assist with the transition from resuscitation to end of life care. Shared clinical reflection on death in the emergency department, facilitated by experts in ageing and end of life care is recommended. [ABSTRACT FROM AUTHOR]

Introduction: Little is known about the identity and moral experience of clinicians who provide the option of aid in dying to terminally ill Americans. Methods: In May 2023 we distributed an email survey to clinicians registered for the American Clinician's Academy on Medical Aid in Dying listserv. Results: Of the 72 clinicians who responded, 90% were of white race, 50% were over 60 years old, and 47% had been in practice for over 20 years. Most clinicians report practicing primary care (39%) or hospice/palliative care (33%); 25% of clinicians had training in palliative medicine. 22% described their practice as a specialized "aid-in-dying practice" and 26% either "rarely" or "never" cared for the terminally ill outside the context of aid in dying. A majority (56%) of clinicians were either affiliated with an independent practice or unaffiliated. Before they began aid-in-dying work, 26% of clinicians reported having felt "somewhat" or "very" morally conflicted; after having written an aid in dying prescription, 96% felt "hardly" or "not at all" conflicted. On average, clinicians felt that aid-in-dying laws balance protection of patients with access; 39% believed that the laws were "somewhat" or "overly" protective. Conclusion: Many responding clinicians report caring for patients considering aid in dying in specialized practices or otherwise in unaffiliated or independent practice. Clinicians report that providing aid in dying (and writing an aid-in-dying prescription) resulted in less reported moral conflict toward aid in dying. [ABSTRACT FROM AUTHOR]

Background: Despite increasing interest in quality end-of-life care (EOLC), critically ill patients often receive suboptimal care. Critical care nurses play a crucial role in EOLC, but face numerous barriers that hinder their ability to provide compassionate and effective care. Methods: An integrative literature review was conducted to investigate barriers impacting the quality of end-of-life care. This review process involved searching database like MEDLINE, Cochrane Central Register of Controlled Trials, CINAHL, EBSCO, and ScienceDirect up to November 2023. Search strategies focused on keywords related to barriers in end-of-life care and critical care nurses from October 30th to November 10th, 2023. The inclusion criteria specified full-text English articles published between 2010 and 2023 that addressed barriers perceived by critical care nurses. This integrative review employs an integrated thematic analysis approach, which combines elements of deductive and inductive analysis, to explore the identified barriers, with coding and theme development overseen by the primary and secondary authors. Results: Out of 103 articles published, 11 articles were included in the review. There were eight cross-sectional descriptive studies and three qualitative studies, which demonstrated barriers affecting end-of-life care quality. Quality appraisal using the Mixed Method Appraisal Tool was completed by two authors confirmed the high credibility of the selected studies, indicating the presence of high-quality evidence across the reviewed articles. Thematic analysis led to the three main themes (1) barriers related to patients and their families, (2) barriers related to nurses and their demographic characteristics, and (3) barriers related to health care environment and institutions. Conclusion: This review highlights barriers influencing the quality of end of life care perceived by critical care nurses and the gaps that need attention to improve the quality of care provided for patients in their final stages and their fsmilies within the context of critical care. This review also notes the need for additional research to investigate the uncover patterns and insights that have not been fully explored in the existing literature to enhance understanding of these barriers. This can help to inform future research, care provision, and policy-making. Specifically, this review examines how these barriers interact, their cumulative impact on care quality, and potential strategies to overcome. [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: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59–4.97, p = 0.33; large – aOR 0.65, 95% CI 0.18–2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes. [ABSTRACT FROM AUTHOR]

Background: Advance care planning has been advocated as a way for people to have their wishes recorded and respected in relation to types of treatment and place of care. However, uptake in England remains low. Aims: To examine the views of older, well, adults towards Advance Care Plans (ACPs) and planning for end-of-life care, in order to inform national policy decisions. Methods: A mixed methods approach was adopted, involving individual and mini-group qualitative interviews (n = 76, ages 45–85), followed by a quantitative survey (n = 2294, age 55+). The quantitative sample was based on quotas in age, gender, region, socio-economic grade, and ethnicity, combined with light weighting to ensure the findings were representative of England. Results: Knowledge and understanding of advance care planning was low, with only 1% of survey respondents reporting they had completed an ACP for themselves. Common reasons for not putting wishes into writing were not wanting/needing to think about it now, the unpredictability of the future, trusting family/friends to make decisions, and financial resources limiting real choice. Conclusion: Whilst advance care planning is seen as a good idea in theory by older, well, adults living in the community, there is considerable reticence in practice. This raises questions over the current, national policy position in England, on the importance of written ACPs. We propose that policy should instead focus on encouraging ongoing conversations between individuals and all those (potentially) involved in their care, about what is important to them, and on ensuring there are adequate resources in community networks and health and social care systems, to be responsive to changing needs. [ABSTRACT FROM AUTHOR]

Background: Oral fluid intake decreases in advanced cancer in the dying phase of illness. There is inadequate evidence to support the assessment, and management, of hydration in the dying. Bioelectrical impedance analysis (BIA) is a body composition assessment tool. BIA has the potential to inform clinal management in advanced cancer, by examining the relationships between hydration status and clinical variables. Aim: BIA was used to determine the association between hydration status, symptoms, clinical signs, quality-of-life and survival in advanced cancer, including those who are dying (i.e. in the last week of life). Materials and methods: We conducted a prospective observational study of people with advanced cancer in three centres. Advance consent methodology was used to conduct hydration assessments in the dying. Total body water was estimated using the BIA Impedance index (Height – H (m)2 /Resistance – R (Ohms)). Backward regression was used to identify factors (physical signs, symptoms, quality of life) that predicted H2/R. Participants in the last 7 days of life were further assessed with BIA to assess hydration changes, and its relationship with clinical outcomes. Results: One hundred and twenty-five people participated (males n = 74 (59.2%), females, n = 51 (40.8%)). We used backward regression analysis to describe a statistical model to predict hydration status in advanced cancer. The model demonstrated that 'less hydration' (lower H2/R) was associated with female sex (Beta = -0.39, p < 0.001), increased appetite (Beta = -0.12, p = 0.09), increased dehydration assessment scale score (dry mouth, dry axilla, sunken eyes - Beta = -0.19, p = 0.006), and increased breathlessness (Beta = -0.15, p = 0.03). 'More hydration' (higher H2/R) was associated with oedema (Beta = 0.49, p < 0.001). In dying participants (n = 18, 14.4%), hydration status (H2/R) was not significantly different compared to their baseline measurements (n = 18, M = 49.6, SD = 16.0 vs. M = 51.0, SD = 12.1; t(17) = 0.64, p = 0.53) and was not significantly associated with agitation (rs = -0.85, p = 0.74), pain (rs = 0.31, p = 0.23) or respiratory tract secretions (rs = -0.34, p = 0.19). Conclusions: This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. Our data demonstrates the feasibility of using an advance consent method to conduct research in dying people. This method can potentially improve the evidence base (and hence, quality of care) for the dying. Future BIA research can involve hydration assessment of cancers (according to type and stage) and associated variables (e.g., stage of illness, ethnicity and gender). Further work can use BIA to identify clinically relevant outcomes for hydration studies and establish a core outcome set to evaluate how hydration affects symptoms and quality-of-life in cancer. Key message: What is already known about this topic? - Oral fluid intake decreases in people with advanced cancer, especially when they approach the dying phase of their illness. - There is inadequate evidence to support hydration assessment and decision making in the dying phase of illness. - It is important to understand which clinical factors are associated with hydration status in advanced cancer, to enable healthcare professionals, to evaluate hydration status and support clinical decision making. - Bioimpedance is a non-invasive technology, which has potential to identify clinically relevant variables for cancer hydration assessment. What this paper adds. - This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. - The variables with combined significance for predicting hydration status were biological sex, appetite, dry mouth, dry axilla, sunken eyes, breathlessness and oedema. In the dying phase, hydration status did not significantly change compared to baseline, and hydration status was not significantly associated with survival. Implications for practice, theory or policy. - Further work can use bioimpedance to identify clinically relevant outcomes for hydration studies, to establish a core outcome set to evaluate how hydration affects symptoms and quality-of-life in cancer. [ABSTRACT FROM AUTHOR]

Introduction: Geriatric fracture is a pressing global health issue, marked by elevated mortality and morbidity rates and escalating health care costs. The evolving health care system from fee-for-service to quality-based reimbursement has led to externally driven reward and reimbursement systems that may not account for the complexity of caring for older adults with fracture. Significance: The aim of this review is to highlight the need for a shift towards meaningful metrics that impact geriatric fracture care and to issue a call to action for all medical societies to advocate for national reimbursement and ranking systems that focus on metrics that truly matter. Results: Traditional metrics, while easier to capture, may not necessarily represent high quality care and may even have unintentional adverse consequences. For example, the focus on reducing length of stay may lead to older patients being discharged too early, without adequately addressing pain, constipation, or delirium. In addition, a focus on mortality may miss the opportunity to deliver compassionate end-of-life care. Existing geriatric fracture care metrics have expanded beyond traditional metrics to include assessment by geriatricians, fracture prevention, and delirium assessments. However, there is a need to further consider and develop patient-focused metrics. The Age-Friendly Health Initiative (4 Ms), which includes Mobility, Medication, Mentation, and what Matters is an evidence-based framework for assessing and acting on critical issues in the care of older adults. Additional metrics that should be considered include an assessment of nutrition and secondary fracture prevention. Conclusion: In the realm of geriatric fracture care, the metrics currently employed often revolve around adherence to established guidelines and are heavily influenced by financial considerations. It is crucial to shift the paradigm towards metrics that truly matter for geriatric fracture patients, recognizing the multifaceted nature of their care and the profound impact these fractures have on their lives. [ABSTRACT FROM AUTHOR]

Aim: To describe the development of a shared decision making intervention for planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services. Background: End‐of‐life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End‐of‐life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end‐of‐life conversations. Health professionals report needing more skills to raise the issue of end‐of‐life care options within consultations and patients want to be able to discuss issues important to them about future care plans. Methods: The development design was guided by the UK Medical Research Council's framework and a user‐centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. Results: Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end‐of‐life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. Conclusion: An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. Implications for practice: DESIRE is intended to support shared decision making about planning end‐of‐life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. Impact: What problem did the study address?: International guidelines recommend health professionals involve patients with kidney failure in making decisions about end‐of‐life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end‐of‐life care. What were the main findings?: The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid. Where and on whom will the research have an impact?: The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases. Reporting Method: This intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist. Patient or Public Contribution: Patients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Aims: To investigate the level of adoption of evidence‐based family engagement and support during end‐of‐life cancer care and subsequent bereavement and its contextual facilitators and barriers from health professionals' perspectives, and to explore differences between professional groups. Design: Contextual analysis using an online cross‐sectional survey. Methods: This study was conducted in four Swiss hospitals and three home care oncology and palliative care services. Non‐parametric testing was used to investigate the level of adoption and differences between nurses, physicians, occupational‐ and physiotherapists and psychosocial professionals (chaplains, onco‐psychologists and social workers). The STROBE checklist for cross‐sectional studies was followed. Results: The majority of the 111 participating health professionals were nurses. Adoption was statistically significantly higher during end‐of‐life care than bereavement, with nurses and physicians reporting higher levels than the other professional groups. Guidance on end‐of‐life family care was available in about half of the cases, in contrast to a quarter for bereavement care. Self‐perceived knowledge, skills and attitudes were moderate to high, with nurses and physicians reporting higher levels than others, except for general skills in working with families. Organisational structures were experienced as rather supportive, with the psychosocial group appraising the organisational context as significantly less conducive to fully implementing end‐of‐life and bereavement care than others, particularly during the end‐of‐life phase. Conclusion: Evidence‐based family engagement and support were better adopted during end‐of‐life care than bereavement. Overall, nurses and physicians felt better enabled to care for families compared to other professional groups. Patient or Public Contribution: No patient or public contribution. Protocol registration: https://osf.io/j4kfh. Implications for the profession and/or patient care: Implementation and quality improvement efforts should focus particularly on the bereavement phase and be tailored to professional groups. Impact: The findings show that evidence‐based family engagement and support practices during end‐of‐life were rather well adopted in contrast to subsequent bereavement care, with nurses and physicians better enabled than other professionals to provide care. A better understanding of health professionals' contributions and roles in family care is important to build interprofessional capacity for evidence‐based end‐of‐life and bereavement support. Reporting Method: The STROBE checklist for reports of cross‐sectional studies was followed (von Elm et al., 2007). [ABSTRACT FROM AUTHOR]

Background: The need for palliative care is ever-increasing globally. However, it is least developed or not available in most low-and-middle-income-countries including Bhutan. Objective: This study was aimed at exploring the perspectives of Bhutanese healthcare professionals on the need for palliative care in the country. Design: This is a cross-sectional, mixed-method study. Setting/subjects: The study sites included all levels of healthcare in Bhutan and involved doctors, nurses, physiotherapists, pharmacists, health assistants and Drungtshos (traditional physicians). Data were collected through surveys, focus group discussions and in-depth interviews. Results: While the majority of the participants were directly involved in taking care of terminally ill and dying patients, only 14% had received some form of palliative care training for a duration ranging from 1 day to 6 weeks. Ninety-five percent of the participants reported that they faced challenges related to lack of palliative care knowledge and skills; limited resources including analgesics; shortage of doctors and nurses and lack of a palliative care team; issues with low illiteracy and financial challenges among patients; and policies and other systemic issues. The qualitative data generated four major themes: past adverse experiences; unique and complex needs for palliative care; challenges faced while caring for terminally ill and dying patients; and the urgent need for palliative care in Bhutan. Conclusion: Bhutanese healthcare professionals had very limited exposure to palliative care. This study identified a crucial need for palliative care and informs the development of an appropriate palliative care model for Bhutan. Plain language summary: 'There is no such word as palliative care for us at the moment': A study exploring the perceptions of healthcare professionals on the need for palliative care in Bhutan Palliative care is least developed in most low-and-middle-income-countries. This study was aimed at exploring the perspectives of healthcare professionals on the need for palliative care in Bhutan. Utilising both quantitative and qualitative approaches, the study sites included all levels of healthcare in Bhutan and involved doctors, nurses, physiotherapists, pharmacists, health assistants and Drungtshos (traditional physicians). Data were collected through surveys, focus group discussions and in-depth interviews. While the majority of the participants were directly involved in taking care of terminally ill and dying patients, only 14% had received some form of palliative care training for a duration ranging from one day to six weeks. Ninety five percent of the participants reported that they faced challenges related to lack of palliative care knowledge and skills; limited resources including analgesics; shortage of doctors and nurses and lack of a palliative care team; issues with low illiteracy and financial challenges among patients; and policies and other systemic issues. The qualitative data generated four major themes: past adverse experiences; unique and complex needs for palliative care; challenges faced while caring for terminally ill and dying patients; and the urgent need for palliative care in Bhutan. Bhutanese healthcare professionals had very limited exposure to palliative care. This study identified a crucial need for palliative care and informs the development of an appropriate palliative care model for Bhutan. [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]

Background: End-of-life care raises ethical, moral, legal and economic dilemmas, especially when physicians have to decide whether to initiate or to stop treatments that may be considered disproportionate and futile. Aim: To explore the opinion of health care professionals involved in end-of-life patient care on interventions considered disproportionate and futile at this stage of care, the causes and factors of pressure leading to such situations, and possible solutions to reduce the phenomenon. Material and method: The study used an adapted, designed questionnaire intended for health professionals caring for patients at the end of life. The 128 respondents were physicians, nurses, psychologists and social workers who expressed their opinions about therapeutic obstinacy in end-of-life care. Results: The results of the research highlight the role of the family as a pressure factor, the causes related to the non-acceptance of the prognosis and diagnosis of a terminal condition, fear of death and ignorance of the patient's wishes. Interventions considered disproportionate at the end of life were cardiopulmonary resuscitation, mechanical ventilation, transfusion of blood derivatives, complex diagnostic investigations and the establishment of gastrostomy/jejunostomy in the last days of life. Conclusions: End-of-life therapeutic obstinacy is a reality in end-of-life care, and healthcare professionals face many ethical challenges in this process. Care decisions must be made together with the patient and their family, respecting the rights, dignity and respect of all parties involved in the process. [ABSTRACT FROM AUTHOR]

Background: Spiritual care for patients at the end of life is an important element in their holistic care. The aim of this study is to assess the opinions of cancer patients with limited prognosis about the importance of faith in fighting illness and the factors contributing to a better adjustment to illness and to their self-reconciliation and spiritual well-being. Material and Methods: This study used a specially designed questionnaire for cancer patients with limited prognosis. The 30 respondents were patients with an estimated prognosis of less than 1 month, cared for in a unit with palliative and home care beds. Results: The patients emphasized the importance of family as a supporter in the fight against disease (90%), followed by faith (66.7%) and a care team (63.3%). The most common concerns expressed were related to the course of their disease, family distress, fear of death, and the Russian–Ukrainian war. Conclusion: Family and faith represent important factors in supporting and caring for a patient at the end-of-life. Patients who felt spiritually at peace and were supported in their faith by family and a priest had a better spiritual state. [ABSTRACT FROM AUTHOR]

(1) Background: Nursing homes (NHs) face unique challenges in end-of-life care for their residents. High rates of hospitalization at the end of life are frequent, often for preventable conditions. The increased clinical uncertainty during the pandemic, the high symptom burden of the COVID-19 disease, and the challenges in communication with families and between care teams might impact the option to hospitalize NH residents at the end of life. (2) Materials and methods: The study covered a 3-year period and compared the hospitalization rates of the NH residents of a sample of Portuguese NH during the last year of life before and during the pandemic. A total of 387 deceased residents were included in the study. (3) Results: There were fewer hospitalizations in the last year of life during the pandemic period, although the proportion of deaths at hospitals was the same. Hospitalizations occurred closer to death, and with more serious clinical states. The lower rate of hospitalization was due to lower hospitalization due to infection; (4) Conclusions: The data suggest an improvement in end-of-life care practices during the pandemic period, with the decrease in hospitalizations being due to potentially burdensome hospitalizations. The importance of the role of physicians, nurses, and caregivers in this setting may be relatively independent of each other, and each may be targeted in end-of-life care training. Further study is recommended to clarify the implications of the results and if the changes can be sustained in the long term. [ABSTRACT FROM AUTHOR]

Background: Mental health is an issue of social and economic importance. Sociocultural and scholarly attention has largely focused on the negative aspects of mental health. That is, on mental disorders and illness and how they adversely impact our lives. In contrast, this paper forms part of a recent alternative empirical perspective in discourse-based research, by focusing on the positive aspects of mental health. In this article, we investigate how end-of-life care workers construct their positive psychological states. Methods: Our data are 38 audio-recorded and transcribed semi-structured interviews with end-of-life care workers from Hong Kong and the United Kingdom. We utilized thematic analysis to identify common categorial strands across the data and discourse analysis to identify the linguistic strategies that these interviewees used to talk about their mental health. Results: Our thematic analysis generated a superordinate theme across the interviews—namely, that of end-of-life care workers talking about their positive psychological states. We identify three generic ways that end-of-life care workers talked about these psychological states; by "foregrounding the positive," "reformulating the negative," and "dismissing the negative." Our analysis also explicates how interviewees connected social and organizational support to being a benefit to their psychological states. Conclusions: Our work contributes to existing discourse-based and sociolinguistic research on mental health by turning their focus towards a consideration of its positive dimensions. We also identify recurrent linguistics strategies used by people to construct their mental health. Our analyses point to the importance of investigating mental health as a multidimensional concept that considers participants' own reflections on their mental health. [ABSTRACT FROM AUTHOR]

Background: Person-centred care is becoming increasingly recognised as an important element of palliative care. The current review syntheses evidence in relation to transitions in advanced cancer patients with palliative care needs. The review focuses on specific elements which will inform the Pal-Cycles programme, for patients with advanced cancer transitioning from hospital care to community care. Elements of transitional models for cancer patients may include, identification of palliative care needs, compassionate communication with the patient and family members, collaborative effort to establish a multi-dimensional treatment plan, review and evaluation of the treatment plan and identification of the end of life phase. Methods: A scoping review of four databases (MEDLINE, EMBASE, CINAHL, PsycINFO) was conducted to identify peer-reviewed studies published from January 2013 to October, 2022. A further hand-search of references to locate additional relevant studies was also undertaken. Inclusion criteria involved cancer patients transitions of care with a minimum of two of components from those listed above. Studies were excluded if they were literature reviews, if transition of care was related to cancer survivors, involved non-cancer patients, had paediatric population, if the transition implied a change of therapy and or a lack of physical transit to a non-hospital place of care. This review was guided by Arksey and O'Malley's framework and narrative synthesis was used. Results: Out of 5695 records found, 14 records were selected. Transition models identified: increases in palliative care consultations, hospice referrals, reduction in readmission rates and the ability to provide end of life care at home. Transition models highlight emotional and spiritual support for patients and families. No uniform model of transition was apparent, this depends on the healthcare system where it is implemented. Conclusions: The findings highlight the importance of collaboration, coordination and communication as central mechanisms for transitional model for patients with advanced cancer. This may require careful planning and will need to be tailored to the contexts of each healthcare system. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusions 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.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.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.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. [ABSTRACT FROM AUTHOR]

Aims International studies have examined patients' views concerning the discussion of deactivating an implantable cardioverter defibrillator (ICD). Findings reported that many patients were either not informed about the subject or were informed late in their illness trajectory. This study aimed to explore healthcare professionals' perspectives on discussing ICD deactivation and identify priorities for clinical practice and future research. Methods and results Eleven interviews were conducted, involving heart failure nurses, physicians, and an allied professional. All were responsible for the care of patients with an ICD, from the UK or Sweden. A semi-structured guide was used. All interviews were audio-recorded, transcribed, translated (as applicable), and analysed independently by experienced researchers, using framework analysis. Findings were presented, along with published work at a stakeholder meeting, and a consensus agreement was reached on priorities for clinical practice and future research. Four themes emerged from the exploratory interviews. Healthcare professionals described the discussion about deactivation as challenging, requiring compassion and involvement of family members. They agreed that the topic should be initiated prior to, or shortly after, device implantation. This was reflected in the priorities to improve communication, through the increased availability and implementation of prompts and tools, as well as the provision of tailored information to patients and family members. Stakeholders recognized the future potential of digital technology in device education. Conclusion Discussing deactivation remains challenging. Healthcare professionals recognized the need to initiate the discussion early, with compassion and involvement of family members. Priorities were agreed by stakeholders, which require clinical implementation and further research. [ABSTRACT FROM AUTHOR]

Purpose: This study investigated the factors influencing attitudes toward end-of-life care among nurses at a tertiary hospital in Korea. Specifically, it examined the roles of nurses’ characteristics, death perceptions, terminal care stress, and life satisfaction. Methods: The participants included 150 nurses working at a tertiary hospital, who were recruited between August 15 and September 19, 2023. Data were collected through an online survey and analyzed using descriptive statistics, the t-test, analysis of variance, Pearson correlation coefficients, and multiple regression analysis with SPSS/WIN 28.0. Results: Nurses’ attitudes toward end-of-life care were positively correlated with death perceptions (β = .28, p < .001), 3 years or more of clinical experience (β = .25, p = .001), the experience of an acquaintance death (β = .22, p = .002) and life satisfaction (β = .20, p = .004). These variables explained 34.0% of the total variance in attitudes toward end-of-life care. Conclusion: It is essential to develop and implement individualized end-of-life nursing education programs, particularly utilizing simulations, for nurses with limited clinical experience and low levels of death perceptions. Further research should explore attitudes toward end-of-life care among various healthcare providers with a broader regional scope to improve the overall quality of end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child's bedside and have an acknowledged role in helping patients and families understand the information that they have been given by a doctor. Hence, the ethical role of the nurse in truth disclosure to children is worth exploring. Methods: A systematic academic database and grey literature search strategy was conducted using CINAHL, Medline Psych Info, and Google Scholar. Keywords used included truth, children, nurse, disclosure, serious illness, and communication. A total of 17 publications of varying types were included in the final data set. Ethical Considerations: As this was a review of the literature, there were no direct human participants. Empirical studies included in the review had received ethics approval. Results: Of the 17 articles included in the review, only one directly reported on the experiences of nurses asked to withhold the truth from patients. Empirical studies were limited to HIV-positive children and children diagnosed with cancer and the dying child. Conclusion: A paucity of literature exploring the experiences, attitudes, and beliefs of nurses with regard to truth-telling to seriously ill children is evident. Little consideration has been given to the role nurses play in communicating medical information to children in a hospital setting. The 17 articles included in the review focused on cancer, and HIV, diagnosis, and end-of-life care. Further research should be undertaken to explore the experiences and attitudes of nurses to clinical information sharing to children hospitalised with a wide range of serious illnesses and in diverse clinical scenarios. [ABSTRACT FROM AUTHOR]

Background: End-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the preferred model for making medical decisions, little is known about SDM between nephrology nurses and ESRD patients in Israel. Research Objective: Assessing the views, attitudes, practices, and ethical dilemmas of nephrology nurses in Israel regarding SDM with ESRD patients. Methods: Using the descriptive quantitative approach, questionnaires were completed by 444 nephrology nurses in Israel. In addition to conducting descriptive statistics, t-tests for independent samples, f-tests for analysis of variance, and both tests for independence were also performed. Ethical Considerations: The research aims, expected advantages and risks have been explained to respondents before completing the questionnaire to secure informed consent. Anonymity and confidentiality were ensured throughout the study. The study was approved by the Research Ethics Committee at the University of Haifa (Approval # 411/21). Results: About one-third (30%–36.5%) of nurses reported discussing quality of life issues with ESRD patients, asking about their advance directives/power of attorney, exploring cultural/religious beliefs in end-of-life care, and ask about their preferred place of death. Nurses who convey high levels of patient-centered care (68.9%, p <0.0001), have high end-of-life training (76.2%, p <0.0001), and report cooperating with interdisciplinary teams (63.8%, p = 0.0415), also reported higher SDM practices than others. Nurses who refer less patients to palliative care (70%, p <0.0001) reported higher involvement in SDM compared to other nurses. Conclusions: Nephrology nurses in Israel do not tend to implement the SDM model, despite its potential for improving quality of life for ESRD patients and their families and increasing conservative care options. Policy makers and educators in Israel should develop and implement training programs and support in the workplace, to enhance SDM between nephrology nurses and ESRD patients. [ABSTRACT FROM AUTHOR]

Interest in voluntary assisted death (VAD) has been growing among researchers, policy makers and the public. This study aimed to explore older adults' perspectives on VAD in Australia. Using purposive sampling, 15 adults ≥65 years participated in in-depth semi-structured interviews. Interpretative phenomenological analysis identified four themes: cultural reflections; beliefs and worldviews; health aspects; and fabric of life. Participants expressed a desire to have control over end-of-life options, challenged by religious beliefs. Participants expressed concern that VAD legislation could leave people vulnerable to coercion and saw a need for safeguards. Reasons for and against supporting and utilising VAD were discussed. Physical illness was seen a more compelling reason for VAD than mental ill-health. Finally, connections to life and other were discussed, and being able to do the things one loved were named aspects of what it meant to live a good life. Implications are discussed along with future research directions. [ABSTRACT FROM AUTHOR]

While trying to protect themselves from COVID-19, intensive care nurses saved many patients by providing care during the pandemic. The aim of this study is to determine the anxiety levels of nurses working in intensive care units about COVID-19, attitudes toward and approaches to end-of-life care, and attitudes toward dying with dignity. This cross-sectional descriptive study was carried out with 144 nurses. The Attitudes and Behaviors of ICU Nurses Intended for End-of-Life Care Scale, Attitudes towards Principles about Dying with Dignity Scale and COVID-19 Anxiety Scale were used to collect data. The mean age of the nurses was 30.02 ± 6.02. 63.80% of them were women and 62.20% of them worked in the internal intensive care unit. While the participants supported the principles of dying with dignity, their attitudes and approach to end-of-life care were at a good level, and COVID-19 anxiety was at a low level. Participants mostly adopted the protection of human dignity and privacy principles. Attitudes and approaches to end-of-life care and attitudes toward dying with dignity were not affected by COVID-19 anxiety. [ABSTRACT FROM AUTHOR]

Western society is in an era of death awareness, its most recent salience: A Positive Death Movement. This article traces the evolution of American death culture by describing key periods of change, starting with the 1700s and going through the 21st century, and overviews contemporary movement scholarship. Experts suggest our current epoch is one in which a diffuse collection of individuals and organizations advocate for approaching death differently. Movement proponents aim to modify society's "conventional" death framework, which is characterized as medicalized, institutionalized, impersonal, and lacking psychosocial emotional preparation and engagement. [ABSTRACT FROM AUTHOR]

Objectives: The objectives of this study were to examine the roles and needs of allied health professionals (AHPs) working in public healthcare settings in rural and regional Victoria, Australia in providing components of palliative care in their routine practice. Methods: A cross-sectional study was conducted between March and May 2023. Surveys were collected from AHPs working in public healthcare settings in the Loddon Mallee region of Victoria, Australia. Clinicians reported on the frequency of provision of care to patients with terminal illness, and their self-reported skill and confidence in providing interventions to patients with palliative care needs. Results: In total, 121 clinicians completed the survey. Almost every respondent reported they had provided care to patients with a terminal illness, with 41% of clinicians providing this care daily or weekly. The respondents were confident carrying out generalist interventions such as maintaining physical function but reported lower confidence in managing common symptoms of terminal illness such as loss of appetite, swallowing difficulties and changing communication needs. Two-thirds of respondents had not undertaken any training specific to palliative care, with many unaware of how to access palliative care-specific training. Conclusion: AHPs in rural and remote areas regularly provide care to patients with terminal illness. As the number of patients seen in non-specialist palliative care settings is likely to increase in rural and regional areas, the low self-reported confidence in providing common components of care, and the low uptake of palliative care-specific training must be addressed to ensure AHPs can provide high-quality care to people with terminal illness. What is known about the topic? Due to the increasing demand for palliative care services, this care is increasingly delivered by general non-specialist clinicians such as allied health professionals. What does this paper add? This study provides evidence for how often a surveyed population of allied health professionals in rural and regional Australia are providing care to people with a terminal illness, as well as their confidence, competence and learning needs. What are the implications for practitioners? High-quality care is needed at end-of-life, therefore rural and regional health services need to support allied health professionals to increase confidence and competence in providing palliative care. [ABSTRACT FROM AUTHOR]

Background: Older adults with serious illness near the end-of-life often receive invasive treatments. We developed a conceptual model called clinical momentum that describes system-level forces producing a trajectory of care that is difficult to modify and contributes to overtreatment. We sought to evaluate the empirical fit of our model by examining an event with clear guidelines against intervention: permanent feeding tube placement in patients with advanced dementia. Methods: We screened three hospitals and identified patients 65 years and older with advanced dementia who received a permanent feeding tube. We interviewed 34 family members and clinicians. We coded transcripts and characterized factors that arose during the course of care and their relationships to feeding tube placement. We used abductive analysis to compare the data with theory and identify areas of discordance and alignment. Results: We found that the course of care started with a temporary tube to correct an acute problem. As problems were identified, multiple clinicians were consulted to address a specific problem without collective discussion of the patient's health trajectory. Eventually, clinicians had to address the temporary tube, which was framed to families as a decision to place a permanent feeding tube or withdraw treatment. Conclusion: Elements of the model—including recognition-primed decision-making, "fix-it," and sunk costs—contributed to placement of a feeding tube, which set in motion a path toward intervention long before a goals-of-care conversation occurs. Clinical momentum expands our understanding of overtreatment at the end-of-life and may reveal opportunities to reduce other nonbeneficial interventions. [ABSTRACT FROM AUTHOR]

Delirium is a distressing condition in terminally ill cancer patients, often treated with antipsychotics. Administering them orally, subcutaneously, or intravenously can be challenging in severely agitated patients. Transdermal antipsychotic patches offer an alternative, but their use for terminal delirium remains underexplored. We present the case of a 73-year-old man with advanced diffuse large B cell lymphoma who developed severe mixed delirium during third-line chemotherapy. Nonpharmacological interventions and oral risperidone plus intravenous haloperidol failed to improve his condition. Subsequently, a transdermal blonanserin patch was applied, resulting in the resolution of hallucinations on day 1 and agitation on day 3, allowing improved communication. The patch was easily applied daily without notable adverse events. However, he deteriorated a week later with an estimated survival of days, ultimately requiring continuous midazolam for refractory agitation. This case underscores the potential of transdermal blonanserin patches for delirium in terminally ill cancer patients, emphasizing the need for future prospective studies. [ABSTRACT FROM AUTHOR]

Background: Palliative extubation (PE) is the cessation of mechanical ventilation (MV) during terminal illness. Although PE is widely practiced in many countries, it remains illegal in others. Attitudes toward PE of patients at the highest risk for MV were scarcely explored before. Objective: To assess the attitudes of patients with advanced chronic illnesses (ACI) toward PE and other end-of-life decisions in a country where PE is illegal. Design: A prospective observational study using questionnaire-based interviews. Setting/Subjects: Patients with ACI hospitalized between 2021 and 2022 in a large tertiary center. Attitudes toward PE and mechanical ventilation were evaluated. Predictors for favoring/opposing PE were analyzed using multivariate logistical regression models. Results: A total of 152 (40% female, 75 ± 11 years) patients were included. The most common ACIs were advanced heart failure (32%), metastatic malignancy (32%), and chronic obstructive pulmonary disease (22%). Around 132 patients (87%) supported the legalization of PE, and their main reason was to avoid pain and suffering (87%). Legalization of PE would change the decision to avoid mechanical intubation in 34% of the cases. Most patients thought that the decision to perform PE should be made by the patient's physician and primary caregiver collaboratively (64%). Religious observance was an independent predictor for opposing PE (adjusted odds ratio 0.18; 95% confidence interval 0.06–0.59; p < 0.01), whereas the type of ACI was not. Conclusion: Most admitted patients with ACIs support the legalization of PE. Such policy change could have major impact on patients' end-of-life preferences. At-risk patients should be the focus of future studies in this area. [ABSTRACT FROM AUTHOR]