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.

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.

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.

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.

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 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.

'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.

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.

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.

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.

The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.

INTRODUCTION: Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. METHODS: An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers, and five healthcare professionals. RESULTS: The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. CONCLUSION: Through an iterative, flexible, inclusive, and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. PATIENT OR PUBLIC CONTRIBUTION: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers.

Making organ donation after circulatory death routine: Preserving patienthood and reproducing ways of dying in the intensive care unit.

Controlled organ donation after circulatory death (DCD) was re-introduced in the UK in 2008, in efforts to increase rates of organs for transplant. Following reintroduction, there were debates about the ethics of DCD, including whether potential DCD donors receive end-of-life care which is in their best interests. Since this time, DCD has become a routine donor pathway in the NHS. In this article, we present findings from an ethnographic study examining the everyday practices of DCD in two English Trusts. Drawing on the concept of death brokering and Bea's (2020) call to consider organ donation as embedded and routine practice within health care, we look at how DCD is integrated into end-of-life care in intensive care units. We show how DCD is made routine at the end-of-life via the practices of health professionals who create an active separation between discussions about death and donation; reproduce usual ways of doing things in end-of-life care; and respect the distinction between patient/donor, dying and death. In doing so, we argue these function to preserve the patienthood of the potential donor, ensuring DCD operates as an integrated part, and culturally accepted form of, good end-of-life care for potential donors, their relatives, and health professionals alike.

End-of-life Care Patient Information Leaflets-A Comparative Evaluation of Artificial Intelligence-generated Content for Readability, Sentiment, Accuracy, Completeness, and Suitability: ChatGPT vs Google Gemini.

Background: End-of-life care (EOLC) is a critical aspect of healthcare, yet accessing reliable information remains challenging, particularly in culturally diverse contexts like India. Objective: This study investigates the potential of artificial intelligence (AI) in addressing the informational gap by analyzing patient information leaflets (PILs) generated by AI chatbots on EOLC. Methodology: Using a comparative research design, PILs generated by ChatGPT and Google Gemini were evaluated for readability, sentiment, accuracy, completeness, and suitability. Readability was assessed using established metrics, sentiment analysis determined emotional tone, accuracy, and completeness were rated by subject experts, and suitability was evaluated using the Patient Education Materials Assessment Tool (PEMAT). Results: Google Gemini PILs exhibited superior readability and actionability compared to ChatGPT PILs. Both conveyed positive sentiments and high levels of accuracy and completeness, with Google Gemini PILs showing slightly lower accuracy scores. Conclusion: The findings highlight the promising role of AI in enhancing patient education in EOLC, with implications for improving care outcomes and promoting informed decision-making in diverse cultural settings. Ongoing refinement and innovation in AI-driven patient education strategies are needed to ensure compassionate and culturally sensitive EOLC. How to cite this article: Gondode PG, Khanna P, Sharma P, Duggal S, Garg N. End-of-life Care Patient Information Leaflets-A Comparative Evaluation of Artificial Intelligence-generated Content for Readability, Sentiment, Accuracy, Completeness, and Suitability: ChatGPT vs Google Gemini. Indian J Crit Care Med 2024;28(6):561-568.

Nurses' perspectives about end-of-life care when family presence is restricted during a pandemic: A qualitative study.

BACKGROUND: To prevent the infection from spreading, patients who were dying from COVID-19 were treated in isolation with restricted family access, which differed from existing end-of-life care procedures. This was a significant change that affected the care provided by nurses. OBJECTIVES: This study explored nurses' end-of-life care experiences in a limited family visitation setting during the COVID-19 pandemic. METHODS: A descriptive qualitative study was conducted. Data were collected through individual, in-depth, semistructured interviews with ten critical care nurses who provided end-of-life care to patients with COVID-19 in South Korea. The data were analysed using thematic analysis. The Consolidated Criteria for Reporting Qualitative Research checklist was used to assess the study's rigour. FINDINGS: Three themes were identified: 'Witnessing patients' and families' heartbreak over separation', 'The gaps between the ideals and realities of end-of-life care', and 'Efforts to provide patients with a comfortable final journey'. Nurses realise the importance of their central role in supporting interactions between patients and families during end-of-life care. CONCLUSIONS: Family participation, facilitated by nurses' interest and efforts as mediators connecting patients and families, is essential for achieving high-quality care for inpatients facing end of life. This study is significant as it emphasises that the direction of end-of-life care should be family centric, even in a pandemic situation with limited family participation. To improve interaction between patients and families, creating an environment based on family participation that builds trust and strengthens communication is essential. Additionally, hospital support, such as professional education and counselling, should be provided to strengthen nurses' end-of-life care competency.

Physicians' experiences and perceptions about withholding and withdrawal life-sustaining treatment in Chiang Mai University Hospital: a cross-sectional study.

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.

Differential Effects of an Integrated Community-Based End-Of-Life Support Team (ICEST) Model for Terminally Ill Older Adults on Spousal and Adult-Children Caregivers.

Backgrounds: Family caregivers (FCs) play an essential role in delivering home-based end-of-life care. However, little is known about FCs'' experiences when undertaking this role. The integrated community end-of-life support team (ICEST) is a needs-driven, home-based, family-centered care model in Hong Kong. We evaluated its effects on FCs and compared outcomes for spouses and adult children. Method: A multicenter pre-post-test study was conducted. Eligible participants were primary FCs of terminally ill older adults (age ≥ 60) who had a life expectancy of ≤12 months. Baseline (T0) and three-month post-intervention (T1) outcome measures included FCs'' caregiving strain, psychological distress, perceived external support, intimate relationships, and communications regarding care planning. Results: A sample of 628 FCs were enrolled at T0, and 40.0% completed the T1 assessments. The ICEST model was effective in reducing caregiving strain, depression, and worries about patients, whilst there were improvements in agreement about care planning with patients, and perceived external supports. At T0, spouses held more negative perceptions of caregiving and faced fewer adjustment demands than adult children. Compared with spouses, adult children were more intimate with patients. Between T0 and T1, spouses experienced a greater reduction in worries about patients, than adult children. Conclusions: The ICEST model contributed to better outcomes, individually and relationally, for FCs, regardless of relationship type. Spouses and adult children faced different challenges while delivering home-based end-of-life care. Effective interventions should modify the negative perceptions of caregiving in spousal caregivers and enable adult children to deal with multiple tasks and complex expectations.

Management of Infections in Palliative Care Patients at the End-of-Life and Active Process of Death: A Brazilian Retrospective Study.

Background: There is a lack of specific studies on the management of infections in patients receiving palliative care (PC) in the final stages of life and during the active process of death, related to specific nursing care. There is clinical and social importance as patients in PC represent a vulnerable population, and adequate management of infections is crucial to improve quality of life and the experience of comfort. Objective: This study analyzed how infections are managed in patients undergoing PC at the end-of-life and in the active process of death in two hospital health services. Design: This is an observational, analytical, and retrospective study. Settings: Data collection took place in two hospitals that assist individuals who are hospitalized under PC, located in Brazil, in a city in the interior of the state of São Paulo. Measurements and Results: The sample consisted of 113 medical records, in which the oncological diagnosis was the most prevalent. There was a predominance of infection diagnoses based on the patient's clinical symptoms, the main focus being the pulmonary, in individuals at the end-of-life. The management of infection in the study sample occurred through care and procedures that generate physical discomfort, however aiming at relieving symptoms. Such findings must be documented, as they invite us to reflect on our practical attitudes and what it means to be comfortable for these people, making it possible to incorporate this information into the design of interventions focused on enhancing the experience of comfort.

Perceptions and attitudes of Nursing students towards end-of-life care: a Phenomenological Study at a tertiary hospital in Uganda.

Introduction: Clinical practice is an important part of nursing education as it helps nursing students transition into competent health professionals who can provide quality services. However, research studies convey it as a significant stressor for nursing students when they are obliged to end of life during clinical practice. The perceptions of nursing students on caring for end-of-life care have not been exhaustively studied in the Ugandan context. This study was conducted to understand nursing students' perceptions of end-of-life care during clinical practice at Mulago Hospital. Methods: It was a qualitative study with a phenomenology method carried out among 15 nursing students from Makerere University who were assigned to Mulago Hospital for clinical practice. Data was gathered using an in-depth interview guide, audio was captured, and transcriptions were analyzed thematically using Atlas.ti version 6. Results: Three main themes emerged from the data; two themes on perceptions were (i) reactions when nursing students were informed about the physical process of caring for dying patients and (ii) how student ideas about the care changed during the process of caring for end-of-life. The third theme was the attitude of students towards patients when offering end of life care. participants described their reactions as chaotic, devastated and scared about their first-time encounter with caring for dying patients, the physical process also required preparation to handle the situation and understanding, and for positive personal values felt respected, appreciated, trusted and valued when informed about the physical process of caring for the end-of-life. Conclusion: In this study, nursing students held divisive attitudes on care for dying patients. However, nursing students appear to transition from unfavorable impressions of the process and encounter of caring for dying patients to positive perceptions during the actual caregiving experience. Despite their differing perspectives on caring for dying patients, students were typically empathic towards them.