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BACKGROUND: Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit. AIM: Appraise the evidence to identify factors influencing referral and access to children's palliative care, and interventions to reduce barriers and improve referrals. DESIGN: Scoping review following the six stages of the Arksey and O'Malley framework. Data were charted using an adapted version of the socioecological framework. DATA SOURCES: CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included. RESULTS: One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions (n = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated. CONCLUSION: Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access.

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

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OBJECTIVES: Our primary objective was to determine if more comprehensive advance care planning (ACP) documentation was associated with fewer transfers to hospital in the last year of life. Our secondary objective was to determine the impact of ACP processes and practices on hospital transfers in the last year of life. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Long-term care (LTC) residents in Ontario, Canada, 65 years and older who died between January 1, 2017, and May 30, 2018, and resided in a participating LTC home. METHODS: We administered a survey to directors of care at LTC homes inquiring about ACP practices. Our exposure of interest was living in a home with comprehensive ACP documentation that includes information beyond preferences for cardiopulmonary resuscitation and hospital transfer. Our primary outcome was the number of transfers to hospital in the last year of life. We fit negative binomial regression models to determine the independent effect of comprehensive ACP and other indicators of ACP quality. RESULTS: A total of 157 LTC homes with 6637 decedent residents were included in our study; 2942 lived in homes with comprehensive ACP documentation and 3695 had non-comprehensive ACP documents. Comprehensive documentation was not associated with fewer hospital transfers in the final year of life (incidence rat ratio [IRR], 1.00; 95% CI, 0.91-1.09). ACP documentation update frequency, availability of ACP documents in the electronic medical record, referring to ACP documents during a health crisis, inclusion of resident values in ACP documents, and involvement of a multidisciplinary team were all associated with fewer transfers to hospital during follow-up in the last year of life. CONCLUSIONS AND IMPLICATIONS: ACP documents that contain information beyond preferences for cardiopulmonary resuscitation and hospital transfer had no association with transfers to hospital, but high-quality ACP practices and processes were associated with fewer transfers.

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The use of antimicrobials in patients receiving end-of-life (EOL) care, which is generally defined as supportive care provided to patients anticipated to live less than 1 year, has been actively debated in the realm of palliative care medicine due to the nebulous nature of the topic. In this article, we explore the use of antimicrobial use near EOL as it relates to both the ethical and practical issues that face physicians. We also discuss the reasons underlying the scarcity of prospective studies on this topic.

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Purpose: This study aimed to investigate advance care planning needs expressed online. Methods: This study collected data from online community posts and healthcare news sites. The search keywords included "death," "euthanasia," "life-sustaining medical care," "life-sustaining treatment," "advance directives," "advance medical directives," and "advance care planning." Data collection spanned from February 2018 to February 14, 2020. Out of 2,288 posts, 1,190 were included in the final analysis. Data analysis was conducted using NVivo 12, a qualitative data analysis software program. Results: Content analysis categorized patients' advance care planning needs into eight themes, 11 theme clusters, and 33 meaningful statements. Similarly, care providers' advance care planning needs were categorized into eight themes, 14 theme clusters, and 42 meaningful statements. The identified themes of care needs included life-sustaining medical care, decision-making related to life-sustaining medical care, physical care, environmental care, supportive and spiritual care, respect, preparing for death, and family. Conclusion: This study identified care needs from the perspectives of patients and their families. The findings may serve as preliminary data for future research and clinical applications.

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Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. Methods: A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Results: Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. Conclusion: e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care.

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BACKGROUND: Homeless adults experience a significant symptom burden when living with a life-limiting illness and nearing the end of life. This increases the inequalities that homeless adults face while coping with a loss of rootedness in the world. There is a lack of palliative and end of life care provision specifically adapted to meet their needs, exacerbating their illness and worsening the quality of their remaining life. AIM: To identify interventions and models of care used to address the palliative and end of life care needs of homeless adults, and to determine their effectiveness. METHODS: Standard systematic reviewing methods were followed, searching from 1 January 2000 the databases: Ovid MEDLINE, EMBASE, SCOPUS, Web of Science, CINAHL and PsycInfo. Results were reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and described using a narrative synthesis. Study quality was assessed using Hawker's Quality Assessment Tool. RESULTS: Nine studies primarily focused on: education and palliative training for support staff; advance care planning; a social model for hospice care; and the creation of new roles to provide extra support to homeless adults through health navigators, homeless champions or palliative outreach teams. The voices of those experiencing homelessness were rarely included. CONCLUSION: We identified key components of care to optimise the support for homeless adults needing palliative and end of life care: advocacy; multidisciplinary working; professional education; and care in the community. Future research must include the perspectives of those who are homeless.

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OBJECTIVES: Cancer pain is a prevalent and challenging symptom affecting a significant number of patients globally, with inadequate control remaining a substantial challenge despite advancements in pain management. Non-pharmacological interventions, including mindfulness-based approaches, have shown promise in alleviating cancer-related pain. This study aimed to explore the efficacy of a single session of 20-minute mindful breathing in reducing pain among patients with cancer. METHODS: A randomised controlled study was conducted at the University of Malaya Medical Centre, Malaysia, involving adult cancer inpatients with a pain score of ≥4/10. Participants were randomly assigned to a 20-minute mindful breathing intervention or a 20-minute supportive listening control group. Outcome measures included pain intensity, pain unpleasantness and Hospital Anxiety and Depression Scale score, assessed before and after the intervention. RESULTS: The 20-minute mindful breathing sessions demonstrated significant efficacy in reducing pain intensity, pain unpleasantness and anxiety compared with the control group. CONCLUSION: This research broadens the repertoire of cancer pain management by highlighting the rapid and holistic benefits of a single session of 20-minute mindful breathing. The findings suggest the potential integration of brief mindfulness exercises into routine cancer care to enhance pain management and overall well-being.

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BACKGROUND: Empirical investigations on health care professionals' (HCPs) perception of dignity have already spotted common themes in preserving dignity in end-of-life care. However, heterogenic assessment results of varying HCP groups exist. This pilot study wants to provide further evidence on HCPs' rating of dignity-impairing aspects based on a patient-centered concept, especially regarding different underlying job profiles and other professional characteristics. METHODS: In a quantitative study design, the rating of dignity-impairing factors in end-of-life care via an adapted version of the Patient Dignity Inventory (aPDI) was assessed. Participants of the relevant professional groups were recruited via convenience sampling from a region of Germany. RESULTS: From the final sample of participants, 229 questionnaires were analyzed. The overall importance of each dignity-impairing aspect in end-of-life care was considered to be very high by all different HCP groups. Nonetheless, ratings differed between professions: nursing staff had the highest ratings of importance compared to both physicians and individuals with multiple occupations. Participants with previous knowledge in bioethics also rated some aspects as more important compared to those without this feature. CONCLUSION: With the findings of this investigation, an insight of how professionals rate impairments of dignity at the end of life based on a patient-centered concept is given. Thus, a link between empirical research and medical ethics is added. Potential normative implications for HCPs in practice of a dignified care can be derived, consisting of actively addressing social topics as well as further stressing ethics as a fundamental subject in the training and continuing education.

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BACKGROUND: Intensive care units (ICUs) have mortality rates of 10%-29% owing to illness severity. Postintensive care syndrome-family affects bereaved relatives, with a prevalence of 26% at 3 months after bereavement, increasing the risk for anxiety and depression. Complicated grief highlights issues such as family presence at death, inadequate physician communication and urgent improvement needs in end-of-life care. However, no study has comprehensively reviewed strategies and components of interventions to improve end-of-life care in ICUs. AIM: This scoping review aimed to analyse studies on improvement of the quality of dying and death in ICUs and identify interventions and their evaluation measures and effects on patients. METHODS: MEDLINE, CINAHL, PsycINFO and Central Journal of Medicine databases were searched for relevant studies published until December 2023, and their characteristics and details were extracted and categorised based on the Joanna Briggs model. RESULTS: A total of 24 articles were analysed and 10 intervention strategies were identified: communication skills, brochure/leaflet/pamphlet, symptom management, intervention by an expert team, surrogate decision-making, family meeting/conference, family participation in bedside rounds, psychosocial assessment and support for family members, bereavement care and feedback on end-on-life care for healthcare workers. Some studies included alternative assessment by family members and none used patient assessment of the intervention effects. CONCLUSION: This review identified 10 intervention strategies to improve the quality of dying and death in ICUs. Many studies aimed to enhance the quality by evaluating the outcomes through proxy assessments. Future studies should directly assess the quality of dying process, including symptom evaluation of the patients.

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BACKGROUND: Palliative care (PC) refers to providing patients with physical, psychological, mental, and other care and humanistic care services in a multidisciplinary collaborative mode with end-of-stage patients and family members as the centre. The PC screening tool (PCST) was developed to identify individuals who may benefit from PC services and is widely assumed to improve patient outcomes. OBJECTIVES: The purpose is to understand which specific PCST has been applied to clinical patients and to analyse and summarise the impact of using these tools on patient outcomes. METHODS: A systematic review of articles published on PCST was performed in PubMed, Web of Science, CINAHL and MEDLINE in January 2024. All original research articles on PCST fulfilling the following eligibility criteria were included (1) utilisation and evaluation of tools was the primary objective and (2) at least one patient outcome was reported. RESULTS: A total of 22 studies were included, 12 studies used a prospective study, 4 studies used a non-RCT and 6 studies used an RCT. The studies were heterogeneous regarding study characteristics, especially patient outcomes. In total, 24 different patient outcomes were measured, of which 16 outcomes measured in 12 studies significantly improved. CONCLUSIONS: We found that the majority of included studies reported that implementing PCST can improve patient outcomes to some extent, especially when used to improve in reducing hospitalisation time and patient readmission rate. However, there is a lack of high-quality research on this widely used screening tool.

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INTRODUCTION: The need for end-of-life care is common in intensive care units (ICUs). Although guidelines exist, little is known about actual end-of-life care practices in Hong Kong ICUs. The study aim was to provide a detailed description of these practices. METHODS: This prospective, multicentre observational sub-analysis of the Ethicus-2 study explored end-of-life practices in eight participating Hong Kong ICUs. Consecutive adult ICU patients admitted during a 6-month period with life-sustaining treatment (LST) limitation or death were included. Follow-up continued until death or 2 months from the initial decision to limit LST. RESULTS: Of 4922 screened patients, 548 (11.1%) had LST limitation (withholding or withdrawal) or died (failed cardiopulmonary resuscitation/brain death). Life-sustaining treatment limitation occurred in 455 (83.0%) patients: 353 (77.6%) had decisions to withhold LST and 102 (22.4%) had decisions to withdraw LST. Of those who died without LST limitation, 80 (86.0%) had failed cardiopulmonary resuscitation and 13 (14.0%) were declared brain dead. Discussions of LST limitation were initiated by ICU physicians in most (86.2%) cases. Shared decision-making between ICU physicians and families was the predominant model; only 6.0% of patients retained decision-making capacity. Primary medical reasons for LST limitation were unresponsiveness to maximal therapy (49.2%) and multiorgan failure (17.1%). The most important consideration for decision-making was the patient's best interest (81.5%). CONCLUSION: Life-sustaining treatment limitations are common in Hong Kong ICUs; shared decision-making between physicians and families in the patient's best interest is the predominant model. Loss of decision-making capacity is common at the end of life. Patients should be encouraged to communicate end-of-life treatment preferences to family members/surrogates, or through advance directives.

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BACKGROUND: The final year of life is often associated with increasing health complexities and use of health services. This frequently includes admission to an acute hospital which may or may not convey overall benefit. This uncertainty makes decisions regarding admission complex for clinicians. There is evidence of much variation in approaches to admission. AIMS: To explore how Primary Care clinicians approach hospitalisation decisions for people in the final year of life. DESIGN: Systematic literature review and narrative synthesis. DATA SOURCES: We searched the following databases from inception to April 2023: CINAHL, Cochrane Library, Embase, MedLine, PsychInfo and Web of Science followed by reference and forward citation reviews of included records. RESULTS: A total of 18 studies were included: 14 qualitative, 3 quantitative and 1 mixed methods study. As most of the results were qualitative, we performed a thematic analysis with narrative synthesis. Six key themes were identified: navigating the views of other stakeholders; clinician attributes; clinician interpretation of events; the perceived adequacy of the current setting and the alternatives; system factors and continuity of care. CONCLUSION: This review shows that a breadth of factors influence hospitalisation decisions. The views of other stakeholders take great importance but it is not clear how these views are, or should be, should be balanced. Clinician factors, such as experience with palliative care and clinical judgement, are also important. Future research should focus on how different aspects of the decision are balanced and to consider if, and how, this could be improved to optimise patient-centred outcomes and use of health resources.

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OBJECTIVES: People with multiple system atrophy (MSA) and their carers may have many concerns about their disease and the future. This survey of people with MSA and their carers aimed to increase understanding of end-of-life care and palliative care for this group. METHODS: A survey was undertaken by the MSA Trust of people living with MSA and carers of those with the condition between August and October 2022. RESULTS: 520 people responded: 215 people with MSA, 214 carers and 91 former carers. The modal class for age in people with MSA was 65-74 years, with 52% male. 76% of people living with MSA had thought to some extent about what they wanted to happen towards the end of their lives. 38% of respondents had discussed end-of-life care options with a healthcare professional and of those who had, over 81% found the conversation helpful. Nevertheless, for 37% of former carers, the death had been unexpected. Only a minority of people living with MSA had been referred for specialist palliative care. 65% of the former carers reported that they were satisfied with the quality of end-of-life care. CONCLUSION: People with MSA and their carers continue to face many complex physical and emotional issues that would benefit from palliative care. Discussions about care at the end of life were generally perceived as helpful, but although the deterioration was often discussed, many families seemed unprepared for the death. Palliative care services were involved but this appeared limited.

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Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional overload, and multiple potentially life-altering decision points. In addition to clinical acumen, families desire clear and consistent communication, supported decision-making, a multidisciplinary approach to psychosocial supports throughout an admission, and comprehensive bereavement support after a death. Distinct from their adult counterparts, pediatric providers care for a broader set of rare diagnoses with limited prognostic information. Decision-making requires its own ethical framework, with substitutive judgment giving way to the best interest standard as well as "good parent" narratives. When a child dies, bereavement support is often needed for the broader community. There will always be a role for specialist palliative care consultation in the pediatric neurocritical care unit, but the care of every patient and family will be well served by improving these primary palliative care skills.

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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.

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AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. METHODS: This exploratory qualitative study was conducted with 20 nurses working in Turkey. Study data were collected through in-depth and semi-structured individual interviews. The interviews were then submitted to thematic analysis. RESULTS: Three themes emerged from analyses of the interviews: (1) inadequate support for delivery of palliative care, (2) perceptions of family readiness, and (3) providing information/education to the family. The most prominent difficulties experienced by nurses were inadequacy of unit and equipment and lack of trained personnel. Another important issue that stood out was families' not accepting the end-of-life care decision for the fetus or the neonate and their having unrealistic expectations. CONCLUSION: Study results have provided important considerations for regional isolated neonatal and perinatal units, and they will be used to inform clinical practice improvements, staff education support, policies/procedures, family support, and further research relating to end-of-life care provision for the most vulnerable babies and their families.

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

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BACKGROUND: Neurologically critically ill patients present with unique disease trajectories, prognostic uncertainties, and challenges to end-of-life (EOL) care. Acute brain injuries place these patients at risk for underrecognized symptoms and unmet EOL management needs, which can negatively affect their quality of care and lead to complicated grief in surviving loved ones. To care for patients nearing the EOL in the neurointensive care unit, health care clinicians must consider neuroanatomic localization, barriers to symptom assessment and management, unique aspects of the dying process, and EOL management needs. AIM: We aim to define current best practices, barriers, and future directions for EOL care of the neurologically critically ill patient.