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Background and Aims: The lack of a dedicated pain service catering to the postsurgical period has resulted in the origination of the pain-period gap. This has led to a resurgence of transitional pain service (TPS). Our objective was to evaluate the feasibility of TPS in pain practice among postsurgical cancer patients and its prevention of persistent postsurgical pain (PPSP), culminating in chronic pain catastrophising. Methods: The protocol for this meta-analysis was registered in the International Prospective Register of Systematic Reviews (ID: CRD42023407190). This systematic review included articles involving all adult cancer patients undergoing cancer-related surgery experiencing pain, involving pharmacological, non-pharmacological and interventional pain modalities after an initial systematic pain assessment by pain care providers across diverse clinical specialities, targeting multimodal integrative pain management. Meta-analysis with meta-regression was conducted to analyse the feasibility of TPS with individual subgroup analysis and its relation to pain-related patient outcomes. Results: Three hundred seventy-four articles were evaluated, of which 14 manuscripts were included in the meta-analysis. The lack of randomised controlled trials evaluating the efficacy of TPS in preventing PPSP and pain catastrophising led to the analysis of its feasibility by meta-regression. The estimate among study variances τ[sup.2] was determined and carried out along with multivariate subgroup analysis. A regression coefficient was attained to establish the correlation between the feasibility of TPS and its patient outcome measures and opioid-sparing. Conclusion: TPS interventions carried out by multidisciplinary teams incorporating bio-physical-psychological pain interventions have resulted in its successful implementation with improved pain-related patient outcomes mitigating the occurrence of PPSP. Keywords: Acute pain service, chronic postsurgical pain, opioid-sparing, onco-anaesthesia, pain catastrophising, palliative care, persistent postsurgical pain, transitional pain service, Author(s): Raghu S. Thota (corresponding author) [1]; S Ramkiran [2]; Aveek Jayant [3]; Koilada Shiv Kumar [3]; Anjana Wajekar [4]; Sadasivan Iyer [5]; M Ashwini [6] INTRODUCTION Most cancer centres [...]

No study has unequivocally proven that chemotherapy prolongs overall survival (OS) in advanced esophageal cancer. We conducted a Phase III randomized study in first‐line advanced unresectable/metastatic esophageal/GEJ cancer. Patients aged 18–70 years, with performance status 0–2, were randomized to best supportive care (BSC) alone, or BSC with weekly paclitaxel 80 mg/m2. BSC comprised, as indicated, education, counselling, radiation, stenting, feeding tube placement, nutritional supplementation, medications like analgesics, and referral to a support group and palliative care. The primary endpoint was OS; secondary endpoints included progression free survival (PFS), response, toxicity, and QoL. Between May 2016–December 2020, we recruited 281 patients: 143 to chemotherapy and 138 to BSC. Histopathology was squamous in 269 (95.7%) patients. Median number of paclitaxel doses was 12 (IQR, 7–23). Median OS was 4.2 months (95% CI, 3.42–5.32) in BSC, and 9.2 months (95% CI, 8.02–10.48) in chemotherapy; HR, 0.49 (95% CI, 0.39–0.64); p <.001. As compared to BSC, chemotherapy increased response (2.9% to 39%), median PFS (2.1 to 4.2 months), 1‐year OS (11% to 32%), 2‐year OS (0 to 9%), median dysphagia‐free survival (2.9 to 14.8 months), and global and esophagus‐specific QoL, without significantly increasing all‐grade or grade ≥3 toxicities. Using ESMO clinical benefit scale and ASCO Value Framework, palliative chemotherapy scored as having "substantial value." Our study provides the first level 1 evidence that chemotherapy prolongs survival in advanced esophageal/GEJ carcinoma. BSC alone is no longer appropriate. Weekly paclitaxel is an attractive option, especially in LMICs with limited access to immunotherapy. [ABSTRACT FROM AUTHOR]

Background: Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses' prioritizations in their work to achieve well-being and health for nursing home residents. Aim: The aim of this study was to explore nursing home nurses' priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. Research design, participants, and research context: We conducted a qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. Ethical considerations: Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). Findings: We identified an overarching theme—nursing home nurses struggling on multiple fronts, "just do it"—and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives' expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. Conclusions: Nurses' priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses' priorities. Nursing home nurses need organizational and managerial support to prioritize. [ABSTRACT FROM AUTHOR]

This article examines some of the compromises that emerge in the process of converting colonial-era material culture into 'heritage' claiming to foreground a critical postcolonial consciousness. Prompted by recent controversies about statuary celebrating figures who engaged in colonial exploitation and slavery, I look at how frictions inherited from the colonial period are projected onto colonialism's physical remains. This article, however, enquires into ways in which disputes over the proper function of postcolonial heritage projects may be framed not in a militant, but in a conciliatory register, that aims to accommodate diverse representational imperatives, instead of elevating one as supreme. In postcolonial settings such as the one discussed, these imperatives awkwardly include the tourism industry's promotion of 'colonial nostalgia' via the restoration of 'colonial ambiences'. Focusing on a Portuguese-era fort that served as a prison for Goa's 'freedom-fighters', I investigate the unexplained, and subsequently contentious, display of pictures authored by the nationally-renowned artist Mario Miranda in one section of the fort. The article then recounts the contours of a public challenge to this exhibition's legitimacy, and examines the introduction in an adjacent space at the fort of a Freedom Fighters' Gallery. Drawing on archival and ethnographic research, I analyse tensions within and between each of these exhibitions, connecting them to deeper fissures in colonial experience and postcolonial memory. I argue that these fissures are best understood in their relationship to recriminations both about colonial experience and about inequalities traceable to its 'aftermaths', which are now consolidated in uneven political geographies. [ABSTRACT FROM AUTHOR]

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the 'good death': free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the 'good death' as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care. [ABSTRACT FROM AUTHOR]

Primary palliative nursing in home health care (HHC) can be delivered to medically complex patients across the lifespan. Primary palliative nursing provides patient- and family-centered care for serious illness by alleviating the stress and symptoms of illness; coordinating care; and supporting the social, cultural, and psychological aspects of care. In this article, two case scenarios of patients in different phases of life serve as examples of primary palliative nursing in HHC. Key elements and challenges of delivering primary palliative nursing care in HHC are also highlighted. The authors discuss the key elements and challenges of primary palliative nursing in the home health care setting and offer two case scenarios of patients receiving such care. [ABSTRACT FROM AUTHOR]

Introduction: Total resection of cystic craniopharyngiomas is challenging, especially for some large cystic tumors, because it is often associated with high recurrence and morbidity rates. Minimally invasive cyst decompression and continuous drainage are appropriate to manage clinical symptoms. We reviewed our experience of the past 11 years to determine the long-term effects of neuroendoscopic surgery (NES) combined with Ommaya reservoir (OR) for the treatment of cystic craniopharyngiomas. Methods: We retrospectively analyzed the data of 15 adult patients with cystic craniopharyngiomas at a single institution with the primary goal to evaluate the treatment mode with initial adequate decompression of the cyst under visualization and continuous drainage. The study endpoints were functional outcome, cyst volume changes, and tumor progression. Results: The median follow up was 77 (20–136) months. Clinical symptoms, e.g. increased intracranial pressure and visual impairment, could be rapidly improved after NES. The postoperative reduction in cyst volume (p < 0.001) and improvement in Karnofsky performance status (p < 0.001) were significant, and long-term tumor control was achieved in 10 patients (67%). Aspiration from the OR after progression of the tumor's cystic portion remains a major option, with only few patients requiring repeat NES procedures. No patient developed acute or severe clinical symptoms during follow up. Conclusions: NES could decompress the craniopharyngioma cyst under visualization and enable faster clinical-symptom improvement. The minimally invasive NES combined with OR allowed long-term symptom control in most patients without surgery-related injury. This palliative treatment strategy could be an alternative modality for cystic craniopharyngioma treatment. [ABSTRACT FROM AUTHOR]

Aims and Objectives: Initiation of palliative care early in the disease trajectory is beneficial for patients with a life‐limiting disease. However, palliative care is still introduced rather late or not at all. Therefore, this study aims to explore barriers and facilitators to early initiation of palliative care as perceived by nurses working on pneumology and nephrology. Methods: A descriptive interview‐based study was conducted from a critical realist perspective until data sufficiency was reached. Fifteen nurses presented and discussed a patient for whom palliative care was initiated too late. Template analysis was conducted to develop themes and subthemes. Results: Five key themes were extracted: (1) communication, (2) fear, (3) personal beliefs about life and death, (4) ambiguity in terminology and (5) workload and time pressure. Barriers related to poor interdisciplinary communication were therapeutic obstinance, hierarchy, unawareness of the patient's wishes and fear of saying something inappropriate. Other barriers were patients' religious beliefs which often hindered the use of sedatives or morphine and led to discomfort and time restraints. A palliative support team in hospital and advance care planning (ACP) were enablers for early palliative care. Study Limitations: This study started from a negative experience, leading to identification of a lot of barriers and only a few facilitators. The limited sample size and the restriction to two wards within one single hospital limit the diversity of perspectives and the generalisability of the findings. Conclusion: More attention is needed for ACP and interdisciplinary communication. Palliative care, including ACP, and interdisciplinary communication should be included in the basic curricula of all healthcare professional courses. Further research is needed to explore barriers and facilitators to early initiation of palliative care in other healthcare settings and patient populations. This is crucial in order to develop and implement sustainable interventions for specific groups of patients. [ABSTRACT FROM AUTHOR]

Background: Serious illnesses, such as cancer, bring the threat of loss of health and life closer. This may compromise spiritual well‐being. Addressing patients' spirituality is essential in nursing care. Therefore, nursing records should reflect, clarify, and enable spiritual‐care follow‐up. Aim: The aim of this study is to explore how spiritual care is expressed in nursing records in cancer care. Method: This study adopted a hermeneutic approach, and a qualitative content analysis was used to explore the nursing records of 43 inpatients with cancer from Norway. Ethical approval was obtained, and the privacy of the patients and healthcare professionals was safeguarded in line with the applicable legislation. Results: Spiritual care was rarely reported in the nursing records (i.e., the nursing care plans and the progress notes). However, traces of spiritual care appeared in the records of everyday nursing. Four themes emerged from the analysis: (1) relieving life pain and mitigating loss, (2) facilitating faith support, (3) welcoming family and friends, and (4) sustaining normality and sharing joy. Conclusions: This study showed that the nursing records of cancer care seldom expressed spiritual care concerning patients' life pain, loss, or faith support. Increasing nurses' competencies in mapping, documenting, and attending to spiritual care, as well as overcoming the limitations of documentation systems, could help address the spiritual needs of cancer patients. [ABSTRACT FROM AUTHOR]

Introduction: Among people diagnosed with Amyotrophic Lateral Sclerosis (ALS), there are parents with children living at home. Children in families experiencing severe illness are exposed to stress and health risks. Since 2010, healthcare personnel in Norway must assess whether patients have children under 18 years of age and make sure the children's needs for support are met. A child's ability to cope with family life affected by a serious illness depends on how the parent without the disease manages the situation. Little is known about how the partner of someone affected by ALS manages being next of kin and a parent simultaneously, and what kind of support they need. Methods: During 2021–2022, six semi‐structured interviews were conducted with partners to persons with ALS, whom had children living at home. The interviews were transcribed verbatim and analysed through qualitative content analysis. Results: Three themes with subthemes emerged: (1) Together, yet alone; (a) restricted home life, (b) missing the sharing of responsibilities and tasks as equal parents, and (c) caught between children's and partner's needs; (2) Experience of coping while waiting for death; (a) cherishing the moments, (b) sense of coping and concern, and (c) ensuring to get recharged; and (3) Support in times of need; (a) difficult to ask the network for help and (b) the healthcare system does not see the whole family. Conclusions: Our respondents felt alone, caught between the needs of their children and partner, without necessary support from the services, and were left to handle everyday life with all new challenges on their own. Future healthcare services need to consider the challenges faced by families dealing with life‐limiting illnesses. A family‐focused perspective is needed, so is peer support and interventions that address both emotional and practical aspects of life with an ill partner. [ABSTRACT FROM AUTHOR]

Appeals to the miraculous are common in healthcare, and arguments about end-of-life decision-making can quickly become theological. Assessments of hope have been recommended within the biopsychosocialspiritual model of medicine, but these assessments fail to account for the theological dimension of hope. Examples of failed assessments include recent efforts in palliative care and classic works, such as On Death and Dying by Elisabeth Kübler-Ross. To adequately address the patient's and family members' hopes without patronizing or harming the patient, assessments must be done by a person trained in theology. [ABSTRACT FROM AUTHOR]

PURPOSE: Data on end-of-life care (EOLC) quality, assessed through evidence-based quality measures (QMs), are difficult to obtain. Natural language processing (NLP) enables efficient quality measurement and is not yet used for children with serious illness. We sought to validate a pediatric-specific EOLC-QM keyword library and evaluate EOLC-QM attainment among childhood cancer decedents. METHODS: In a single-center cohort of children with cancer who died between 2014 and 2022, we piloted a rule-based NLP approach to examine the content of clinical notes in the last 6 months of life. We identified documented discussions of five EOLC-QMs: goals of care, limitations to life-sustaining treatments (LLST), hospice, palliative care consultation, and preferred location of death. We assessed performance of NLP methods, compared with gold standard manual chart review. We then used NLP to characterize proportions of decedents with documented EOLC-QM discussions and timing of first documentation relative to death. RESULTS: Among 101 decedents, nearly half were minorities (Hispanic/Latinx [24%], non-Hispanic Black/African American [20%]), female (48%), or diagnosed with solid tumors (43%). Through iterative refinement, our keyword library achieved robust performance statistics (for all EOLC-QMs, F1 score = 1.0). Most decedents had documented discussions regarding goals of care (83%), LLST (83%), and hospice (74%). Fewer decedents had documented discussions regarding palliative care consultation (49%) or preferred location of death (36%). For all five EOLC-QMs, first documentation occurred, on average, >30 days before death. CONCLUSION: A high proportion of decedents attained specified EOLC-QMs more than 30 days before death. Our findings indicate that NLP is a feasible approach to measuring quality of care for children with cancer at the end of life and is ripe for multi-center research and quality improvement. [ABSTRACT FROM AUTHOR]

The article offers a detailed overview of the indexing process for relevant research papers, reviews, and case reports in the field of palliative care, with a focus on homelessness and end-of-life care. Topics include the criteria for inclusion of journals in the bibliography, the priority journals listed for indexing, and a specific case study highlighting the challenges of providing palliative care to homeless adults.

Good palliative care requires thorough assessment of patient needs and addressing them appropriately. Cognitive behavioural therapy (CBT) has been a mainstay in the management of psychological symptoms of palliative care patients, however, systematic reviews in this subject remain limited. This scoping review aims to provide an overview of the available literature in the use of cognitive behavioural interventions (CBI) in the adult palliative care setting, specifically. Publications were obtained from PubMed, Scopus, and PsycINFO, screened, and data was collected following the Joana Briggs Institute framework of scoping reviews. Quantitative intervention studies make up most of the included studies (64/69), with most studies reporting improvements in depression (24/69), anxiety (17/69) and quality of life (17/69). Advanced cancer (38/69) and end-stage renal disease (21/69) were the most common palliative care settings in the included studies. Conventional CBT as an intervention was studied the most (32/69), and most conducted the intervention face to face (38/69). To address the knowledge gaps identified, it is recommended that future studies diversify the palliative care settings and further inquire into remote methods of delivering CBIs. [ABSTRACT FROM AUTHOR]

Context: End-of-life palliative care aims to provide comprehensive care and can be marked by somatic, psychosocial, and spiritual distresses, requiring interdisciplinary care. However, interdisciplinary care is costly, and palliative care services, similar to all other medical services, are pressurized to be as cost-effective as possible. Objectives: To describe the case complexity of palliative care inpatients, we evaluated possible correlations between complexity and the provision of care and identified complexity subgroups. Methods: Patients (N = 222) hospitalized in a specialist palliative care unit in Switzerland were assessed for biopsychosocial complexity using INTERMED. Based on a chart review, INTERMED scores were determined at admission and at the end of hospitalization or at death. Descriptive statistics and Pearson's correlation coefficients were used to estimate the association between biopsychosocial complexity and the amount and type of care provided. Principal component analysis (PCA) was conducted to explain variance and identify patient subgroups. Results: Almost all patients (98.7%) qualified as complex, as indicated by INTERMED. Provision of care was positively correlated (r = 0.23, p = 0.0008) with INTERMED scores upon admission. The change in the INTERMED score during the stay correlated negatively with the provision of care (r = −0.27, p = 0.0001). PCA performed with two factors explained 49% of the total variance and identified two subgroups that differed in the INTERMED psychosocial-item scores. Conclusion: Inpatients receiving specialist palliative care showed the highest complexity score of all populations assessed to date using INTERMED. Correlations between biopsychosocial complexity and care provided, and between care and decrease in complexity scores can be considered indicators of care efficiency. Patient subgroups with specific requirements (psychosocial burden) suggested that palliative care teams require specialist palliative care collaborators. Key message: Palliative care provision correlates with case complexity and is effective. [ABSTRACT FROM AUTHOR]

Background and Aim: Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Lung Disease (ILD) have high symptom burden, serious health-related suffering, and mortality that necessitate palliative care (PC) integration. There is an information gap on PC needs, symptom burden, anxiety and depression in COPD and ILD, and the feasibility of PC integration from low-middle-income countries (LMICs). The PCIntegCOPD-ILD study aims to identify PC needs, symptom burden, and psychological distress in severe COPD/ ILD and assess the feasibility of PC integration within standard care. It will also explore experiences and unmet needs relating to disease and PC services for patients and informal carers. Methods and Design: This mixed-methods study will assess PC needs, symptom burden, and psychological distress in patients with severe COPD (stages C, D) and ILD (stages II, III). Assessment will be done at recruitment (T0) and third (T3) month (face-to-face) and first (T1) and second (T2) month (phone call). After initial recruitment, patients will be provided PC interventions as required. At T3, patients' and informal carers' experiences and unmet needs of disease and PC services will be explored through semi-structured interviews. Impact and feasibility of integration of PC within standard care will also be assessed. Discussion: The PCIntegCOPD-ILD study will provide robust data on PC needs, symptom burden, psychological distress and understanding of patient and caregiver perspecitves in severe COPD and ILD. An objective information on feasibility of PC integration will inform development and evaluation of similar models in the management of other progressive chronic diseases in LMICs. [ABSTRACT FROM AUTHOR]

Research in palliative care is regarded as ethically challenging although there is increasing recognition that such research is important. Young adults with life-shortening conditions were not expected to reach adulthood but this population is growing and there is limited research that focuses on their lives or their experiences of engaging in research. The study explored the unintended consequences of pandemic control measures on the lives of young adults living with life-shortening conditions in the United Kingdom. This paper focuses on some of the methodological issues arising from this study, drawing on data that explores participants' experiences of taking part. This is an interpretivist and inclusive qualitative study co-produced with three experts by experience using constructivist Grounded Theory method conducted during the first wave of the Coronavirus pandemic. In-depth interviews using a topic guide were transcribed verbatim and analysed iteratively until the point of data saturation. Twenty-six young adults aged 22–40 (17 female; 9 male), reporting a wide range of life-limiting and/or life-threatening conditions including rare and undiagnosed conditions and co-morbidities. Through analysis we identify four key themes focusing on participants' experiences of taking part in the research: helping others and influencing change; reciprocity and support; therapeutic value; and (in)visibility and legacy. This paper offers methodological reflections on research in palliative care drawing on qualitative co-produced research involving young adults with life-shortening conditions. Our findings indicate that although participating in research can feel uncomfortable, this is outweighed by the perceived benefits of contributing to research. [ABSTRACT FROM AUTHOR]

Heart failure (HF) is considered a multifaceted and life-threatening syndrome characterized by high symptom-burden and significant mortality. To describe the symptom-burden in patients with HF and identify their palliative care needs. In this respect, symptom burden related to sex, age and classification of HF using New York Heart Association Functional Classification (NYHA) were analyzed. A cross-sectional questionnaire survey included adult HF patients according to NYHA II, III, and IV. Palliative care needs were assessed using validated patient reported outcomes measures; SF-36v1, HeartQoL, EORTC- QLQ-C15-PAL, MFI-20 and HADS. Patients were recruited from the Department of Cardiology, North Zealand Hospital, Denmark. In total, 314 patients (79%) completed the questionnaire (233 men). Mean age = 74 years (range 35–94 years). In all, 42% had NYHA III or IV and 53% self-rated their health to be fair or poor. In all, 19% NYHA II and 67% NYHA III/IV patients had ≥4 severe palliative symptoms according to EORTC-QLQ-C15-PAL. In addition, NYHA III/IV had a mean of 8.9 symptoms and a mean of 5.4 severe symptoms. Women, older patients, and those with NYHA III/IV had worse outcomes regarding health-related quality of life, functional capacity, and symptom burden. Patients with HF have a high prevalence of symptoms and, thus, potential palliative care needs. Predominantly, women, older patients, and those with higher severity of disease have the highest symptom burden. PROMs can help cardiologists address the palliative care needs and systematic assessment may be a prerequisite to integrate symptom-modifying and palliative care interventions. [ABSTRACT FROM AUTHOR]

Subcutaneous (SC) administration of fentanyl allows for rapid dose titration to treat urgent cancer-related pain. After establishing the optimal fentanyl dose, patients typically rotate towards transdermal (TD) fentanyl patches. Continuing the SC fentanyl up to 12h after application of the patch led to elevated fentanyl concentrations and fentanyl-related toxicities. Based on these findings, and simulations using a pharmacokinetic (PK) model, SC fentanyl administration was discontinued immediately following the application of the patch. To validate the fentanyl rotation schedule by assessing the PK equivalence in fentanyl exposure before and after rotation. PK samples and clinical data were prospectively collected from 12 hours prior to rotation until 12 hours after rotation in patients with cancer-related pain undergoing fentanyl rotation. Between December 2021 and September 2023, 29 evaluable patients were enrolled in the study. The 90% confidence interval (CI) of the geometric mean ratio between the post- over pre-rotation area under the curve (AUC) fell within the prespecified 0.8–1.25 equivalence interval (90% CI 1.05–1.16). Patient-reported intensity of both nausea (P = 0.047) and transpiration (P = 0.034) decreased post-rotation. Pain intensity and other adverse events did not differ significantly pre and post-rotation. One patient needed adjustment of opioid therapy 40 hours after rotation due to fentanyl-related toxicities. The updated rotation scheme, implying a 1:1 dose conversion and discontinuation of SC fentanyl directly after rotation, resulted in equivalent fentanyl exposure pre and post-rotation. Moreover, the dosing regimen showed to be safe and efficacious during rotation. The new dosing regimen when rotating from SC to TD fentanyl can be effectively and safely implemented in routine palliative care. [ABSTRACT FROM AUTHOR]

Clinician distress is common in serious illness care. Palliative specialists are often consulted for cases involving significant distress among primary teams. Consults involving clinician distress can be challenging to navigate when it feels like 1) palliative specialists do not have the right skills to be helpful or 2) palliative specialists are being asked to 'fix' difficult situations that would require changing other people's attitudes, beliefs, or behaviors, or healthcare systems writ large. This article uses three composite cases to illustrate types of clinician distress and examine the benefits and risks of palliative specialist involvement. We conclude with a discussion of potential impacts of palliative care consults for clinician distress on the field of palliative care and consider next steps in critically important efforts to support and sustain the entire workforce—both palliative specialists and nonspecialists alike—when caring for patients with serious illness and their family caregivers. [ABSTRACT FROM AUTHOR]

Suffering at the end-of-life (EOL) can impact the perception of a "good death" and ultimately affect bereavement for families of children with cancer. Palliative radiation (pXRT) is a tool that can address pain, mitigate suffering and improve quality of life. A retrospective medical record review of pediatric oncology patients who died over an 11-year period was completed. Descriptive analysis and nonparametric tests to compare groups were used. 2202 total deaths occurred during the study period; 167 patients met study criteria, reflecting a 7.6% incidence of pXRT use at the EOL. Most patients were white (68%) and male (59%), with a median age of 9 years. Solid tumors were most common (52%), followed by CNS tumors (38%), and leukemia (10%). pXRT was primarily used to treat pain (37%) and focused on sites including brain/spine (37%), head/neck (24%), and pelvis (12%). Mean radiation dose delivered was 23.8Gy (range: 1.8–55.8 Gy) in a median of 7 fractions (range: 1–31). Side effects were rare and 58% of patients had a decrease in reported pain scores. Additionally, 87% received a pediatric palliative care (PPC) consultation which increased the likelihood for hospice referral, documented DNR preferences and decrease episodes of CPR on the day of death. There is underutilization and significant variability in the use of pXRT during EOL in pediatric oncology. Barriers to this tool may include physician perceptions, family/patient preferences, and logistical hardships. Guidelines to standardize pXRT, alongside earlier PPC integration, may guide clinician decision making and increase pXRT utilization. [ABSTRACT FROM AUTHOR]

Outpatient Palliative Care (OPC) benefits persons living with serious illness, yet barriers exist in utilization. To identify factors associated with OPC clinic utilization. Emergency Medicine Palliative Care Access is a multicenter, randomized control trial comparing two models of palliative care for patients recruited from the Emergency Department (ED): nurse-led telephonic case management and OPC (one visit a month for six months). Patients were aged 50+ with advanced cancer or end-stage organ failure and recruited from 19 EDs. Using a mixed effects hurdle model, we analyzed patient, provider, clinic and healthcare system factors associated with OPC utilization. Among the 603 patients randomized to OPC, about half (53.6%) of patients attended at least one clinic visit. Those with less than high school education were less likely to attend an initial visit than those with a college degree or higher (aOR 0.44; CI 0.23, 0.85), as were patients who required considerable assistance (aOR 0.45; CI 0.25, 0.82) or had congestive heart failure only (aOR 0.46; CI 0.26, 0.81). Those with higher symptom burden had a higher attendance at the initial visit (aOR 1.05; CI 1.00, 1.10). Reduced follow up visit rates were demonstrated for those of older age (aRR 0.90; CI 0.82, 0.98), female sex (aRR 0.84; CI 0.71, 0.99), and those that were never married (aRR 0.62; CI 0.52, 0.87). Efforts to improve OPC utilization should focus on those with lower education, more functional limitations, older age, female sex, and those with less social support. Trial Registration ClinicalTrials.gov Identifier: NCT03325985. [ABSTRACT FROM AUTHOR]

This study explores care experiences while utilising palliative care services of non-western migrant families from the perspectives of patients, family caregivers, and healthcare professionals in Denmark. Twenty-three semi-structured individual and group interviews were conducted among eight patients with a life-threatening disease, 11 family caregivers, and ten healthcare professionals. Thematic analysis revealed three themes: 1) Communication between families and healthcare professionals; 2) Building and lack of trusting relations, and feeling safe, and 3) Access to information and navigating in the healthcare system. Moreover, "language and culture" emerged as transaction themes that are not mutually exclusive, however, interconnect across the mentioned three themes. Non-western migrant families can be supported by healthcare professionals' cultural competency training, negotiating on providing services concerning information, patient preferences, family involvement, and palliative care setting. This study findings urge inter-sectoral collaboration to ensure needs-oriented and linguistically and culturally appropriate palliative care services for non-western migrant families in Denmark. [ABSTRACT FROM AUTHOR]

The study's aim is to explore the experiences of nursing home residents and their next of kin related to interacting with volunteers in daily life and when the resident's death is imminent. Qualitative data consisted of 130 hours of participant observations in three nursing homes and 13 interviews with five residents and eight next of kin. A thematic analysis identified three themes: (1) Social everyday activities - a frame for responsiveness and meaningful everydayness - reflecting the existential dimension of these activities; (2) Time - contrasting volunteers' time for care activities and bedside support to dying residents with professionals' time for similar activities; and (3) Valuable relief when death is imminent - inherent ethical dilemmas - reflecting potential tension between the valuable relief volunteers provide and the preferences of residents and their next of kin. Volunteers can promote and improve a holistic palliative care approach for residents in nursing homes. [ABSTRACT FROM AUTHOR]

Occupations are everyday activities people do that bring meaning and purpose to life and is culturally shaped. This research aimed to explore the occupations of Chinese older adults living with a terminal illness and their caregivers in Singapore. Using a qualitative exploratory approach, 16 care recipient-family caregiver dyads were recruited from a local hospice provider. Semi-structured interviews were carried out and reflexive thematic analysis was employed. Three themes and seven subthemes described the challenges and changes to daily life faced by care recipients and caregivers as they adjusted to living with the terminal condition. Findings suggest that in a family-centric society, the occupations of care recipients are greatly impacted by their families. It is imperative to engage with family members in goal setting and intervention plans to facilitate therapy gains and carry-over into real life. These results may be applicable to other family-centric societies, but further research is required. [ABSTRACT FROM AUTHOR]

BACKGROUND: Numerous studies have demonstrated that hospice palliative care interventions for cancer patients can reduce health care utilzation. In Taiwan, 20-25% of patients who require mechanical ventilation are using prolonged mechanical ventilation (PMV); however, only a limited number of studies have addressed the effectiveness of hospice palliative care for these patients. This study investigated the impact of hospice palliative care utilization on medical utilization among subjects using PMV. METHODS: By using the health insurance database of a nationwide population-based study, we identified subjects who had been on mechanical ventilation for > 21 d, were age ≥18 y between 2009 and 2017, and had received hospice palliative care. The control group was formed through 1:1 matching by using propensity scoring after excluding patients who had participated in palliative care for <15 d or for >181 d. Furthermore, we used a conditional logistic regression analysis to investigate the incidence of ICU admission, emergency department presentation, and cardiopulmonary resuscitation within 14 d before death. RESULTS: A total of 186,533 new subjects receiving PMV age ≥ 18 y were admitted between 2009 and 2017. In addition, the number of subjects receiving palliative care increased annually, rising from 0.6% in 2009 to 41.33% in 2017. The emergency department visits (odds ratio [OR] 0.68, 95% CI 0.63-0.74), ICU admission (OR 0.59, 95% CI 0.53-0.66), cardiopulmonary resuscitation (OR 0.40, 95% CI 0.35-0.46), and total hospitalization cost ($1,319.91 ± $1,821.66 versus $1,544.37 ± $2,309.27 [$USD], P < .001) were significant lower in the palliative care group. CONCLUSIONS: Subjects undergoing PMV while receiving hospice palliative care experienced significant reductions in total hospitalization costs, ICU admissions, cardiopulmonary resuscitation, and medical expenses within 14 d before death. [ABSTRACT FROM AUTHOR]

Despite initiatives to increase palliative care awareness, referrals in primary care settings are still primarily based on provider judgment, causing a lack of appropriate referrals and disparities in access to palliative care resources. The purpose of this quality improvement project was to develop and implement an evidence-based, standardized palliative care referral protocol to increase the palliative care referral rate for eligible patients at a primary care clinic. The project used a preimplementation and postimplementation design with the use of the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework to successfully implement and evaluate the standardized referral process. Over the 10-month project period, the palliative care referral rate increased from 2% (4/193) preimplementation to 11% (16/147) postimplementation of the standardized referral process, which is an increase of 9%. Taking into consideration the potential impact of multiple extraneous variables, there was an overall decrease of 69% in emergency room visits and 73% in hospitalizations for patients who received a palliative care referral. These outcomes support expansion of the standardized referral process throughout other primary care clinics to increase palliative care referrals and sustain a high level of quality patient care. [ABSTRACT FROM AUTHOR]

End-stage renal disease (ESRD) is a complex medical condition growing fastest in Americans 65 years and older. Despite its chronic nature, fewer than 10%of these patients have had advanced care planning. A chart audit (n = 20) of the palliative patients at a community palliative program revealed that no patient had a conversation about prognostication, 10% (n = 2) about the burden of kidney disease, 30%(n = 6) had coordination of care with the nephrologist, and 35% (n = 7) had engaged in end-of- life planning. This project aimed to increase patient-centered care for ESRD patients to 80% in 90 days. The project utilized the Plan-Do-Study-Act quality improvement model in four 2-week rapid cycles with 2 focus improvement areas. The 2 core interventions were patient screening for preferences and values and providing the right care for palliative management utilizing a checklist. At the end of the project, patient-centered right care for ESRD increased from a baseline of 24%to 94%. Patient engagement scores increased from a baseline of 3.2 to 4.9 on a 5-point Likert scale, with 5 being the highest supporting a shared decision model of care in improving patient-centered right care. [ABSTRACT FROM AUTHOR]

Neuropalliative care as a clinical speciality aims to address the unique end-of-life needs and concerns of patients with neurologic disease. Although literature has outlined clinical hurdles, a more nuanced understanding of how neuropalliative care was experienced, conceptualized, and enacted could provide context and depth to better outline practice and research priorities. This article presents findings from an ethnographic study of neuropalliative care conducted in a university-affiliated, tertiary care neurological hospital in Canada with a dedicated neuropalliative consultation service. Specifically, this article examines how clinical hurdles outlined in the neuropalliative literature were experienced and addressed by multiple stakeholders, including patients, families, and clinicians. These clinical hurdles include locating the scope of neuropalliative care, ascertaining the impact of prognostic uncertainty and poor recognition of the dying patient, and navigating the tensions between curative and palliative philosophies. In the discussion, the implications of these clinical hurdles are addressed, concluding with reflections on the role of ethnography, palliative care in the context of functional changes, and broadening approaches to uncertainty. [ABSTRACT FROM AUTHOR]

Many minoritized patients experience discrimination in health care. The same is true for minoritized health care clinicians, including the advanced practice registered nurse (APRN). Specifically, Black Americans have historically and disproportionally been privy to both structural racism and interpersonal racial discrimination (J Subst Abuse Treat 2022;133:108551). For patients, such exposure is associated with physical and mental health consequences, including hypertension, obesity, depression, anxiety, psychological distress, and mortality (Health Serv Res 2019;54 suppl 2(suppl 2):1399--1408). For minoritized clinicians, the subsequent result of discrimination additionally includes poor job satisfaction, decreased productivity, and high turnover (JAMA Health Forum 2023;4(12):e235249). Allyship, the act of supporting minoritized individuals while not being a member of that group, is potentially useful in improving the practice experience of minoritized APRNs, as well as positively impacting minoritized patients' outcomes. This article aims to provide actionable and practical skills for the APRN to create safe spaces for minoritized patients and partners in palliative practice. Explicitly, the role of the palliative care APRN as an ally will be reviewed as well as guidance on how to implement changes that will affect the health care experience for both patients and clinicians. [ABSTRACT FROM AUTHOR]

The evolving legal landscape associated with medical assistance in dying (MAiD) may pose significant challenges for hospice and palliative care professionals. In the United States, 10 states and 1 jurisdiction have passed legislation allowing MAiD. National organizations, such as the Hospice and Palliative Nurses Association, have created position statements to serve as guides to care. Given the clinical and ethical challenges associated with MAiD, a rapid review was conducted to provide current evidence for policymakers, health care professionals, and researchers to use when considering care management and policy initiatives. Using a systematic approach, publications related to MAiD between 2019 and 2024 were extracted and synthesized. The review provides definitions of terms that differentiate between MAiD, euthanasia, physician-assisted suicide, medically assisted death of the nonterminal patient, and death with dignity. A total of 23 articles were included in the review and categorized into 4 themes: (1) legal, regulatory, and policy concerns; (2) health care professional experience ofMAiD; (3) patient and caregiver experience of and communication about MAiD; and (4) disparate access to MAiD. [ABSTRACT FROM AUTHOR]

Background: With hospital electronic prescribing and medicines administration (HEPMA) systems now in widespread use across hospital inpatient clinical services, work is underway to measure the benefits of HEPMA on healthcare systems and patient care. HEPMA functionality enables users to prescribe medicines by 'bundle' or 'protocol'. Although it is assumed that this is a significant system benefit, there are few qualitative studies supporting this conclusion. Aim: To explore the impact of an electronic anticipatory care medicines protocol on junior doctor perceptions of their confidence and competence to prescribe opioids and midazolam for patients at the end of life. Method: Between May and August 2022, one-to-one semi-structured interviews were conducted at a 570-bed District General Hospital with junior doctors who had experience of prescribing on both HEPMA and paper-based systems. Audio recordings of the interviews were transcribed verbatim and underwent thematic analysis. Results: Ten junior doctors participated (median age 23 years). Analysis generated five main themes that described perceptions and attitudes towards confidence and competence. These were prescribing safety benefits; information technology infrastructure, interoperability and system design concerns; clinical knowledge and training needs; cultural and social factors and risks of automation in prescribing. Conclusion: This study suggests that junior doctors experienced an overall increase in their confidence and perceived competence to prescribe anticipatory medicines post-implementation of a HEPMA protocol. Further studies are required to detail the impact of HEPMA/CPOE protocols on clinical practice. [ABSTRACT FROM AUTHOR]

Background: Palliative care is required for a wide range of diseases. In order to promote the wider use of research results, clinical protocols, guidelines on best practices in palliative care, we need more scientific data. However, there are difficulties in applying an evidence-based approach to palliative care. The low level of adoption of evidence-based practice among palliative care nurses is a global problem, since nurses are the most numerous providers of medical services. The inability of nurses to follow new scientific data can negatively affect the quality of life of patients. Material and methods: The authors searched for scientific articles in English and Russian published till 2013 in the PubMed, Scopus, EBSCOhost, and Wiley databases. The study was conducted from June to September 2023. Forty-three publications were selected for the literature review. Results: The goal of evidence-based palliative care practice is to provide effective care to patients using available resources. Analysis of the level of knowledge and skills of nurses in evidencebased practice showed that nurses have low competence in evidence-based medicine. Although the level of education and work experience have a positive correlation. Administrators of medical organizations are not ready for changes in practice. Often nurses themselves do not have a sufficient level of competence in evidence-based practice. Funding and low human resources also significantly complicate scientific activities in the field of palliative care. However, existing studies demonstrate the positive impact of scientific data to improve the quality of life of seriously ill patients. Conclusion: At this stage of development of palliative care in many countries there is an urgent need for scientific research in the field of palliative care. Unwillingness to change, insufficient funding, low human resources, lack of knowledge entail difficulties in implementing a scientific approach. Solving the identified problems will improve the quality of palliative nursing care. Further research is needed to determine the best method for the successful implementation of evidence-based practice in nursing practice. [ABSTRACT FROM AUTHOR]

Background: Palliative care (PC) has the potential to alleviate suffering and enhance quality of life for patients with serious progressive diseases; however, access to PC remains unequal across different populations. Objective: This scoping review aimed to systematically examine the literature on: (1) the primary contributors to inequity in accessing PC; (2) the key barriers to achieving equitable access to PC; (3) the essential recommendations for addressing these issues. Methods: The PubMed, Web of Science, and Embase databases were searched for English-language articles published since 2017. Eligibility criteria: Population- people with chronic, progressive, life-threatening, or limiting diseases. Interventions- any PC intervention, including teams, services, programs, or strategies implemented in both hospital and community settings. Outcomes- equity in access to PC. Study Design- any. The PRISMA (extension for scoping reviews) recommendations were followed. Results: Fourteen studies were included: half originated from North America (USA, n = 5; Canada, n = 2) and the other half from Europe (UK, n = 4; Spain, n = 1) and Australia (n = 2). Most studies focused on ethnic/racial discrimination (n = 4) or geographical discrepancies (n = 4). The remaining studies addressed PC in low- or middle-income countries (n = 2), gender discrepancies (n = 1), informal caregiving (n = 1), socioeconomic inequities (n = 2), and barriers to accessing PC (n = 1). Barriers to equitable access to PC include difficulties in identifying patients nearing the end of life, the "survival imperative," the "normalization of dying," misconceptions, mistrust, limited information about PC and end-of-life care, and a fragmented care system. Conversely, enablers of equitable access to PC encompass proper patient evaluation and workforce education, addressing basic survival needs and social determinants of equity, and promoting intersectoral collaboration, community advocacy, and engagement. Conclusion: Achieving equity in PC is a complex endeavor requiring strong commitment and action at both policy and governmental levels. Additionally, it calls for sustained efforts in clinical practice, workforce planning, capacity building, community engagement, and research investment to implement and assess public health approaches to PC. Future research should aim to provide more comprehensive and generalizable insights into the determinants of equitable access, as well as the enablers and barriers to PC and end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Existing estimates of palliative care need in the UK were produced before the COVID-19 pandemic. We sought to produce updated, population-level estimates of palliative care need for each of the four UK nations and explore how these changed during the pandemic. Methods: We conducted a descriptive analysis of routine data. We used a well-established, diagnosis-based methodology which produced minimal estimates of palliative care need based on underlying causes of death; intermediate estimates based on underlying and contributory causes of death; and maximal estimates based on excluding unexpected causes of death. Additional estimates incorporated deaths involving COVID-19. All methods were applied to official mortality statistics from England, Wales, Scotland, and Northern Ireland for the years 2017 to 2021. Results: From 2017 to 2019 for the UK in total, palliative care need was estimated at ~ 74% (minimal), ~ 90% (intermediate) and ~ 96% (maximal) of total deaths, which was broadly consistent with previous studies. Results were similar across all nations. In the pandemic years, 2020-21, the minimal estimates remained stable in terms of the number of people in need but dropped significantly in terms of the proportion of deaths associated with palliative care need (to ~ 66%) due to the overall increase in mortality and large number of deaths from COVID-19. The intermediate (~ 90%) and maximal (~ 96%) estimates showed an increase in the number of people in need but remained stable in proportion of deaths. When deaths involving COVID-19 were treated as deaths associated with palliative need, the minimal estimates increased to ~ 77% and intermediate estimates increased to ~ 92%. Conclusions: In each of the UK's nations, most people who die will have palliative care needs. Excluding deaths from COVID-19 in population-level estimates of palliative care need risks under-estimating true levels of need. Future studies which estimate population-level palliative care need should consider factoring in deaths from COVID-19. [ABSTRACT FROM AUTHOR]

Background: Nurses occupy a pivotal role in the provision of palliative care, acting as frontline providers who address the physical, emotional, social, and spiritual needs of patients. The complexities inherent in palliative care frequently give rise to ethical dilemmas that significantly impact nurses' decision-making and patient interactions. It is therefore essential to gain an understanding of nurses' perceptions of ethical issues, quality of life, and adherence to patient rights in order to enhance the care delivered in these settings. Aim: This study aims to assess the ethical issues encountered by nurses in palliative care, evaluate their quality of life, and measure their understanding and adherence to patient rights. Methods: A quantitative cross-sectional survey was conducted among a sample of 85 nurses working in palliative care settings, specifically within the Oncology Department and Pain Clinic at a Specialized Hospital in Egypt. A stratified random sampling technique was employed. The data were collected using standardised questionnaires, including the Ethical Issues Scale (EIS), the Nursing Quality of Life Scale (NQOLS), and the Patient Rights Questionnaire (PRQ). The validity and reliability of these instruments were established prior to the commencement of the study. The collected data were subjected to mean and standard deviation (SD) calculations. Statistical analyses, including the calculation of Pearson correlation coefficients, were conducted. Results: The study sample comprised a diverse cohort of nurses, with a mean age of 40 years. The ethical issues were evaluated, yielding a mean score of 4.03 (SD = 0.74) on the EIS, with the highest score for "Patient Care" (M = 4.2, SD = 0.7). The overall quality of life mean score was 6.75, with the working dimension exhibiting the highest mean score at 7.1. The PRQ results indicated a high level of awareness regarding patient rights, with a total mean score of 49.5 (SD = 6.8). The results of the correlation analysis indicated a moderate positive correlation between ethical issues and patient rights (r = 0.52, p < 0.01), and ethical issues and quality of life (r = 0.45, p < 0.01). Conversely, a weaker correlation was found between quality of life and patient rights (r = 0.40, p < 0.05). Conclusions: The findings elucidate the ethical challenges confronted by nurses in palliative care and their ramifications for the quality of life and adherence to patient rights. It is imperative that nurses engaged in palliative care undergo continuous education and training in order to enhance their ethical decision-making abilities and thereby improve the quality of care they provide. Recommendations: It is imperative that strategies be developed to support nurses in addressing ethical dilemmas, to promote awareness of patient rights, and to enhance their overall quality of life through targeted interventions and resources. Clinical trial: No clinical Trial. [ABSTRACT FROM AUTHOR]

Background: In paediatric palliative care, children with life-threatening and life-limiting conditions, their families, and their health care professionals often face difficult decisions about treatment, goals of care, and delivery of care. Advance care planning and shared decision-making are strategies that can improve quality of care by discussing goals and preferences on future care. In this paper, we provide recommendations that aim to optimise advance care planning and shared decision-making in paediatric palliative care in the Netherlands. Methods: A multidisciplinary guideline panel of 20 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on advance care planning and shared decision-making. We performed systematic literature searches to identify quantitative and qualitative evidence and used the GRADE (CERQual) methodology for appraisal of evidence. Recommendations were formulated based on quantitative and qualitative evidence, clinical expertise, and patient and family experiences. Results: We identified 4 RCTs that reported on the effect of advance care planning interventions in paediatric palliative care and 33 qualitative studies on barriers and facilitators to advance care planning and shared decision-making. We formulated 28 strong recommendations in close collaboration with a multidisciplinary guideline panel that provide guidance to offer advance care planning and shared decision-making, involve children and their family, and communicate information about care and treatment. Conclusion: The identified evidence and recommendations support the use of advance care planning and shared decision-making in paediatric palliative care. However, we found several knowledge gaps that should be addressed. As advance care planning and shared decision-making require specific skills and can be time-consuming, we emphasise the importance of education, adequate staffing and sufficient funding to improve integration in clinical practice. We do believe that our recommendations can be used as a starting point to develop recommendations in other countries. However, country-specific factors should be very carefully considered before applying any recommendations in other countries. [ABSTRACT FROM AUTHOR]

Background: The fixed effects model is a useful alternative to the mixed effects model for analyzing stepped-wedge cluster randomized trials (SW-CRTs). It controls for all time-invariant cluster-level confounders and has proper control of type I error when the number of clusters is small. While all clusters in a SW-CRT are typically designed to crossover from the control to receive the intervention, some trials can end with unexposed clusters (clusters that never receive the intervention), such as when a trial is terminated early due to safety concerns. It was previously unclear whether unexposed clusters would contribute to the estimation of the intervention effect in a fixed effects analysis. However, recent work has demonstrated that including an unexposed cluster can improve the precision of the intervention effect estimator in a fixed effects analysis of SW-CRTs with continuous outcomes. Still, SW-CRTs are commonly designed with binary outcomes and it is unknown if those previous results extend to SW-CRTs with non-continuous outcomes. Methods: In this article, we mathematically prove that the inclusion of unexposed clusters improves the precision of the fixed effects intervention effect estimator for SW-CRTs with binary and count outcomes. We then explore the benefits of including an unexposed cluster in simulated datasets with binary or count outcomes and a real palliative care data example with binary outcomes. Results: The simulations show that including unexposed clusters leads to tangible improvements in the precision, power, and root mean square error of the intervention effect estimator. The inclusion of the unexposed cluster in the SW-CRT of a novel palliative care intervention with binary outcomes yielded smaller standard errors and narrower 95% Wald Confidence Intervals. Conclusions: In this article, we demonstrate that the inclusion of unexposed clusters in the fixed effects analysis can lead to the improvements in precision, power, and RMSE of the fixed effects intervention effect estimator for SW-CRTs with binary or count outcomes. [ABSTRACT FROM AUTHOR]

Background: Home-based palliative care is a growing trend, necessitating a deeper understanding of the unique challenges faced by professional staff members in this setting. The shift to home-based care has been driven by advances in technology, changing demographics, and a move toward more patient-centered approaches. As a care setting, the home environment offers distinct characteristics, presenting both advantages and drawbacks for patients and healthcare providers. Objectives: This study aims to explore the experiences and perceptions of professional staff members providing palliative care in patients' homes. Design: A qualitative descriptive study. Methods: Qualitative study with 36 home-based hospice professionals using questionnaires and interviews. Thematic analysis identified key themes in staff experiences and challenges. Results: The central theme of "The Professional Guest" highlights the hybrid identity and boundary role professional staff members must navigate, being both medical professionals and guests in the patient's domain. Four sub-themes emerged: (1) Observing and Applying, emphasizing the conscious scanning of the home environment to build trust and tailor care plans; (2) Asking for Permission, respecting the patient's territory and adapting to their norms; (3) Expecting the Unexpected, maintaining flexibility and improvising in unfamiliar situations; and (4) Preparing the Ground for Your Absence, equipping patients and families with comprehensive self-care guidance during professional staff members' absences. Conclusion: The "Professional Guest" phenomenon captures the complexities of providing care in patient's homes, necessitating a delicate balance between professionalism and personal vulnerability. Specialized training programs and policies should be developed to support professional staff members in navigating this hybrid identity and effectively negotiating the boundaries between professional and personal spheres. Plain language summary: Home visits for end-of-life care: understanding healthcare workers' experiences This study looks at how healthcare workers feel about providing end-of-life care in patients' homes. As more people choose to receive care at home rather than in hospitals, it's important to understand the challenges healthcare workers face in this setting. The researchers interviewed 36 healthcare workers from different backgrounds who work for a home-hospice service in Israel. They found that these workers often feel like "Professional Guests" in patients' homes—they need to be both medical experts and respectful visitors. This can be tricky to balance. The study identified four main ways healthcare workers handle this situation: They carefully observe the home environment to build trust and plan care. They ask permission before doing things, respecting that they're in the patient's space. They stay flexible and ready for unexpected situations. They teach patients and families how to manage when healthcare workers aren't there. The study concludes that providing care in patients' homes is complex and requires a delicate balance between being professional and being personally involved. The researchers suggest that special training programs and policies should be created to help healthcare workers navigate these challenges and provide the best possible care for patients at home. [ABSTRACT FROM AUTHOR]

Background: Incurable cancer is a major contributor to societal suffering and disability, and palliative rehabilitation is recommended to be integrated within and between cancer services at all healthcare levels. However, little knowledge exists on how integration of palliative rehabilitation in cancer is understood and achieved in clinical practice. INSPIRE (Integrated short-term palliative rehabilitation to improve quality of life and equitable care access in incurable cancer) is a large European-funded project that aims to promote quality of life through a novel rehabilitation model for people disabled by advanced cancer. Aim: To compare the existing integration of palliative rehabilitation in cancer within official documents and in clinical practice across five European countries including United Kingdom, France, Denmark, Norway, and Italy. Methods: Mixed methods study with a concurrent research design, comprising a document analysis (N = 23), stakeholder interviews (N = 22), and an online survey (N = 225). Data from each sub-study were analysed separately before results were merged. Results: There was limited integration of palliative rehabilitation in cancer in official documents and in clinical practice, though some indicators of integration, including participation in multidisciplinary teams and adherence to standardised pathways, were identified in the survey. Notably, integration of palliative rehabilitation in cancer in clinical practice was observed within limited organisations in secondary healthcare systems, without widespread adoption. Although palliative rehabilitation in cancer as a concept was sparingly used by stakeholders, they recognised the need for a comprehensive approach including multidisciplinary teams that aligns with the individual patient's needs and goals. Moreover, the ambiguous distinction between the terms 'palliative rehabilitation' and 'palliative care', insufficient funding, lack of well-defined care pathways and competence gaps among healthcare professionals represented barriers to integration of palliative rehabilitation in cancer into clinical practice. Conclusion: Integration of palliative rehabilitation in cancer was limited in the five EU partnership countries investigated. Clarifying the concept of palliative rehabilitation, including adoption of the concept into official documents and delineating it from palliative care, is essential for more successful integration. This can possibly be achieved by addressing the barriers identified and fostering close collaboration across disciplines. [ABSTRACT FROM AUTHOR]

Background: When there is limited access to primary care or end-of-life services for patients with chronic diseases, caregivers often need to bring their loved ones to emergency departments (EDs) to solve or control distressing physical and psychosocial-spiritual problems. There is limited literature about the experiences of primary caregivers of patients with nononcologic chronic diseases who are at the end of life and are evaluated in EDs in Latin America. Methods: We conducted in-depth interviews with primary caregivers of adult patients with advanced and terminal chronic nononcologic diseases who were evaluated in the ED of a hospital in Lima, Peru. This qualitative study employed a phenomenological approach. Themes, categories, codes, and quotes were analyzed using ATLAS.ti 9.1.4. Results: Twelve primary caregivers, aged 38 to 76 years old, mostly female immediate family members (daughter or wife), participated. They described their experiences in the ED, including feelings of despair and anguish due to prolonged waiting times, insufficient resources, incomplete information regarding the patient's problems, and "insensitive" treatment by the staff. Some also expressed gratitude for "saving patient's lives." They also experienced deficiencies in home care follow-up and patient transfers, which worsened during the COVID-19 pandemic; many times they felt that "they were ignored." When caring for patients at home, caregivers felt sad, helpless, and frustrated as they observed patients' progressive deterioration. As patients approached death, caregivers expressed that they tried to "give them all the love" and to have them present for as long as possible, although at the same time caregivers did not want patients to continue to suffer and hoped for "a better place" after this life. Caregivers found their faith to be a source of strength as they continued to care for and be with their loved one until the end. Conclusion: Caregivers reported "traumatic" and "shocking" experiences during ED care, as well as conflict between wanting the patient's suffering to end and wanting to prolong their lives. They also expressed feelings of gratitude, resignation, love, faith, and hope. [ABSTRACT FROM AUTHOR]

Background and aims: Palliative care in the Eastern Mediterranean Region (EMR) faces challenges despite the high number of patients in need. To provide accessible, affordable, and timely services, it is crucial to adopt a suitable care model. World health organization (WHO) recommends integrating palliative care with primary health care (PHC). Given the unique conditions of EMR countries, there is a need to design a model tailored to these contexts. Methods: This study is a multi-method research project conducted through several sub-studies, including a literature review, policy analysis, expert opinion (Delphi Method), dimension-specific analysis, model development, and its validation and refinement (Delphi Method). Drawing from the WHO model, six dimensions: policy, drug availability, education, community integration, service delivery, and research were considered to developing the model and implementation requirements. Within each dimension, evidence-based solutions tailored to the region's context were explored. Results: A successful palliative care model requires, in the policy dimension, oversight by the Ministry of Health (MOH). Having a focal-person or working group within the MOH is crucial for policy-making, formulation, and approval of clinical guidelines, as well as addressing care challenges. It is essential to provide access to morphine and other essential medications, along with facilitating the administration and consumption of morphine at home. Conducting empowerment courses for care providers, can address various challenges. Community involvement through volunteers, charities, and non-governmental organizations (NGOs) is also important. To ensure service provision, monitoring and evaluating systems are crucial, along with striving for service continuity through an appropriate payment system. Lastly, research is necessary for needs assessment, evidence-based practice, and designing evaluation indicators. The proposed model relies on community health workers, especially nurses, as multitasking professionals available for community palliative care. In the presented model, special attention has been given to networking, collaboration, and the use of digital health technologies to support nurses. Conclusion: The model proposed for integrating palliative care into PHC should serve as a framework that enhances access to available and affordable services for countries in the region. While this model was developed based on the overall conditions of the region, each country can tailor it to its unique strengths and opportunities. [ABSTRACT FROM AUTHOR]

Communication is an integral component in palliative care. A number of studies have used conversation analysis (CA) to examine communication between healthcare professionals (HCPs) and patients/companions in palliative care. To the best of our knowledge, however, no work has been done to synthesize these studies. Thus, the review aimed to synthesize these conversation analytic studies in the setting of palliative care. The review included peer-reviewed studies that focused on communication between HCPs and patients/companions and that were published in English before September 10 2022. The database and manual search produced 16 eligible studies. The thematic analysis generated five themes: (1) promoting patient agency and autonomy; (2) practices for gathering pain-related information and navigating pain concerns (practices for gathering pain-related information and practices for navigating patients' pain concerns); (3) initiating and managing end-of-life discussions; (4) facilitating shared decision making in palliative care; and (5) navigating sensitive topics and uncertainty in prognostic talk. The review highlighted the potential of CA for research in palliative care and had implications for communication practice. [ABSTRACT FROM AUTHOR]

Background: Ethnically Chinese adults in Canada and the United States face multiple barriers in accessing equitable, culturally respectful care at the end-of-life. Palliative care (PC) is committed to supporting patients and families in achieving goal-concordant, high-quality serious illness care. Yet, current PC delivery may be culturally misaligned. Therefore, understanding ethnically Chinese patients' use of palliative care may uncover modifiable factors to sustained inequities at the end-of-life. Objective: To compare the use and delivery of PC in the last year of life between ethnically Chinese and non-Chinese adults. Design: Population-based cohort study. Participants: All Ontario adults who died between January 1st, 2012, and October 31st, 2022, in Ontario, Canada. Exposures: Chinese ethnicity. Main Measures: Elements of physician-delivered PC, including model of care (generalist; specialist; mixed), timing and location of initiation, and type of palliative care physician at initial consultation. Key Results: The final study cohort included 527,700 non-Chinese (50.8% female, 77.9 ± 13.0 mean age, 13.0% rural residence) and 13,587 ethnically Chinese (50.8% female, 79.2 ± 13.6 mean age, 0.6% rural residence) adults. Chinese ethnicity was associated with higher likelihoods of using specialist (adjusted odds ratio [aOR] 1.53, 95%CI 1.46–1.60) and mixed (aOR 1.32, 95%CI 1.26–1.38) over generalist models of PC, compared to non-Chinese patients. Chinese ethnicity was also associated with a higher likelihood of PC initiation in the last 30 days of life (aOR 1.07, 95%CI 1.03–1.11), in the hospital setting (aOR 1.24, 95%CI 1.18–1.30), and by specialist PC physicians (aOR 1.33, 95%CI 1.28–1.38). Conclusions: Chinese ethnicity was associated with a higher likelihood of mixed and specialist models of PC delivery in the last year of life compared to adults who were non-Chinese. These observed differences may be due to later initiation of PC in hospital settings, and potential differences in unmeasured needs that suggest opportunities to initiate early, community-based PC to support ethnically Chinese patients with serious illness. [ABSTRACT FROM AUTHOR]

Background: Social media influencers have revolutionized information, gaining viewers, retention, and interest with short videos. Medical teams could potentially benefit from this medium for educating patients. Defining success in this endeavor remains unclear. Objective: We are a surgeon-nurse team that sought to promote our messages on social media to gain viewers and interest in our website. Design: An educational podcast focusing on end-of-life discussions was linked to social media platforms, including Instagram and TikTok, to gain views on our website. Methods: Eleven podcast episodes were produced and published over a 3-month period, between November 2023 and January 2024. The podcast episodes were promoted to "similar clients" based on internal algorithms by a podcast streaming service, Spotify. The promotion provided by Spotify and website views were compared to responses evident by other social media posts. Results: After 3 months of publishing podcast episodes on Spotify, with free publicity, our podcast gained 10,400 promotions, 486 listeners, 49 followers, and approximately 1200 random website views. In comparison, the podcast content garnered more than 50,000 video clip views on TikTok and Instagram, after funding these brief video promotions. TikTok and Instagram both charged $20 or more per promotion. Paid promotion opportunities resulted in no website visits or podcast followers. Conclusion: Our own experience with social media promotion was inadequate in generating interest in our content. The authors would encourage other teams to be strategic with paid promotions and to consider engaging a marketing expert to improve the potential for mass interest in content and promotional efficiency. Additionally, based on these findings, the authors would appreciate more transparency in the algorithms behind successful promotions to better understand "what success looks like" for medical messaging. [ABSTRACT FROM AUTHOR]

Objectives: Our study assesses the current knowledge and prior awareness of undergraduate medical students in Pakistan regarding palliative care. Study Design: This descriptive Cross-sectional online survey was distributed among undergraduate medical students across Pakistan, with a sample size of 246 participants. The questionnaire, adapted from the PaCKS questionnaire by Kozlov et al. (JAMA 15(5):524–34, 2017), was designed to assess the students' prior knowledge about palliative care. Results: The mean PaCKS score was 9.7 out of 13, with a standard deviation of 2.76. Having heard of palliative care before participation in the study was significantly associated with higher PaCKS scores. Key factors associated with a higher incidence of prior awareness of palliative care included attending private institutions, being in a more advanced year of study, and having a higher mean monthly family income (P < 0.001 for each factor). Conclusion: This study explores medical students' understanding of palliative care in Pakistan, finding that while many have a basic grasp of the concept, there are notable misconceptions, particularly in differentiating palliative care from hospice care and understanding its broader role. Interestingly, students' knowledge did not significantly improve as they advanced through medical school, suggesting potential shortcomings in the curriculum. The findings highlight the need for more precise education and targeted training to better equip future healthcare providers for delivering patient-centered care. [ABSTRACT FROM AUTHOR]

Background: Providing high-quality end-of-life care is currently a paramount health priority. Given that the standard of care is intrinsically linked to nurses' motivations, it is becoming too imperative to explore the contributing factors Consequently, this study was undertaken to elucidate the experiences of Iranian nurses regarding their motivation for delivering end-of-life care. Methods: This research is a qualitative, descriptive inquiry employing conventional content analysis, carried out at two governmental hospitals in Gorgan, northern Iran, from February to July 2023. 12 nurses were purposefully selected to participate in the study, ensuring maximal diversity. The data were collected through semi structured interviews and analyzed using Graneheim and Lundman's five-step method. The coding process was facilitated by the useof MAXQDA version 10 software. To establish rigor, the four criteria outlined by Guba and Lincoln were applied. Results: the participants included eight women and four men with an average age of 39.6 ± 6.31 years. The data analysis yielded five main categories and fifteen subcategories. The main categories were: "The Foundations of professional care in nursing", "Core Drivers in Optimal End-of-Life Care", "Family Involvement in End-of-Life Care", "Incorporating Spiritualism in Care" and "Dominant motivational Issues Within the Caregiving Atmosphere". Conclusions: This study delineates the experiences that influence the provision of end-of-life care from the perspective of Iranian nurses. Innate traits such as empathy and a passion for nursing, in addition to nurses' moral compass and spiritual beliefs, serve as pivotal motivational stimuli. Leveraging these findings can be instrumental in shaping healthcare practices and policies to enhance the quality of end-of-life care. [ABSTRACT FROM AUTHOR]