Search Results (335)

Background: Chronic pain in children with cancer is a major challenge in pediatric palliative care. It results from the interaction of disease-related and treatment-related factors, psychological distress, and the child’s family and social environment. When poorly controlled, it can impair quality of life, emotional development, social functioning, and family well-being. This narrative review examines the challenges and management strategies for chronic pain in children with cancer from a pediatric palliative care perspective, with attention to pain mechanisms, assessment difficulties, and psycho-emotional influences. Methods: This narrative review was based on a structured literature search conducted in PubMed/MEDLINE, Scopus, and Web of Science for English-language articles published between January 2000 and October 2025. Of 135 records identified, 15 studies judged most relevant to the thematic scope of the review were included in the final synthesis. A PRISMA-based flowchart was used to illustrate study identification and selection without implying a formal systematic review. Results: Chronic pain in children with cancer emerged as a multidimensional problem requiring an integrated approach to assessment and management, and some studies suggest that 20–26% of childhood cancer survivors experience persistent pain. Pharmacological strategies, including opioids and adjuvant medications, remain central, while psychological, supportive, and non-pharmacological interventions may complement multimodal care. Conclusions: Chronic pain in children with cancer should be managed through an integrated, individualized, and child-centered approach that addresses the physical, emotional, social, and relational dimensions of suffering and may improve quality of life for both children and their families. Full article

Background: Hospice refers to specialised end-of-life care that supports patients and families, making it an important area for studying how language shapes experiences and expectations of care. This study compares hospice discourse on websites in Hong Kong and the United Kingdom, analysing how NLP-based sentiment and interpersonal features, such as personal pronouns and conjunctions, shape logical relations, structure information, and express emotion in patient narratives. Methods: Using a mixed approach that integrates sentiment analysis with Systemic Functional Linguistics (SFL), and taxonomy of conjunctions in particular, this study draws on a 52,086-word corpus from 40 hospice websites (20 from each region). The corpus analytical tool AntConc was used to identify co-occurrence, interpret log-likelihood, and perform concordance analysis. Results: The findings reveal significant differences in the digital delivery of hospice care across regions. According to our data, UK websites tend to express a wider range of personal emotions and frequently use concessive conjunctions when discussing sensitive palliative care topics. In contrast, Hong Kong websites tend to use more additive and causal conjunctions, projecting a stronger focus on institutional care. For example, Hong Kong texts tend to use formal, service-oriented connections such as “we + offer”, reflecting a more informational communicative style. However, both regions frequently use personal pronouns such as “you” and “we” to convey positive sentiment and demonstrate empathy towards patients and their caregivers. Conclusion: These patterns appear to be used strategically by hospice providers to build trust, signal alignment, and strengthen relationships tailored to each region. Lastly, this study makes an original contribution by combining computational and functional linguistic approaches to develop a systematic method for examining culturally shaped digital communication in end-of-life contexts, thereby enriching the field of healthcare discourse analysis. Full article

Background/Objectives: Cancer patients increasingly present to emergency departments, posing unique clinical and organizational challenges. Data on this population in Poland remain limited. Methods: A retrospective study was conducted in two hospitals in northern Poland (January–March 2023). All adult patients with active cancer presenting to the ED were included (n = 552, 3.1% of visits). Data included demographics, cancer type, presenting complaints, Emergency Severity Index (ESI), disposition, and in-hospital mortality. Multivariable logistic regression models were used to assess predictors of hospitalization, hospice referral, and mortality, reported as odds ratios (ORs) with 95% confidence intervals (CIs). Results: Mean age was 68 years; 51% were female. The most common cancers were lung, breast, colorectal, and prostate. Leading complaints included abdominal pain (15%), trauma (7.5%), and dyspnea (7%). Most patients were triaged as ESI 3–4 (87%). Hospitalization rate was 58%, hospice referral 6%, and in-hospital mortality 7.1%. Lower ESI levels were significantly associated with hospitalization (OR 0.57; 95% CI 0.44–0.73), hospice referral (OR 0.40; 95% CI 0.25–0.63), and in-hospital mortality (OR 0.29; 95% CI 0.18–0.47). Conclusions: Oncology patients represent a small but high-risk ED population. While ESI reflects acute severity, it may not adequately capture palliative care needs. These findings suggest opportunities to improve integration of palliative care in ED settings. Full article

Background: Dying in the preferred place is considered an indicator of the quality of end-of-life care. Advance care planning and home palliative care may increase the likelihood of dying at home, but it remains unclear whether the documentation of these preferences in clinical records is associated with the actual place of death. This study assessed whether the recording of patients’ preferred place of care or death was associated with the actual place of death among patients followed by home palliative care teams. Methods: We conducted a retrospective observational study with an exploratory approach that included adult patients who died in 2022 and were followed by a home palliative care team in Madrid, Spain. Data were extracted from electronic health records and analysed using bivariate tests and multivariable logistic regression. Results: A total of 464 patients were included (53% women; mean age 80.8 years). Overall, 82.5% of the patients died at home. Preferences were recorded for 64% of the patients; 97.6% preferred to die at home, and 89% died there. Documentation of preferences was not significantly associated with the place of death. Conclusions: Documentation alone was not independently associated with the place of death. These findings should be interpreted cautiously given the observational and exploratory design of the study and the limited explanatory power of the regression model. Notably, most patients expressed a preference to die at home, and most deaths also occurred at home. Recording preferences may still support advance care planning and patient-centred decision-making, but documentation should not be interpreted as sufficient in itself to influence place of death. Full article

Cardiovascular diseases (CVDs) are the leading cause of mortality in Italy. This study aims to describe the setting of death of patients dying from cardiovascular diseases in Italy and to explore potential changes during the COVID-19 pandemic (years 2020 and 2021) in comparison to the previous five years and the first post-pandemic year, 2022. Data from the Italian National Cause of Death Registry were analyzed to identify deaths due to cardiovascular diseases between 2015 and 2022. To evaluate potential changes associated with the COVID-19 pandemic, deaths occurring during the pandemic years (2020–2021) were compared with those recorded in the pre-pandemic period (2015–2019). The year 2022 was included as a post-pandemic descriptive reference year. A total of 221,653 deaths due to CVD occurred in 2022, compared with 217,523 in 2021, 227,350 in 2020, and a mean of 227,468 deaths per year during the five-year period of 2015–2019. Home was the primary setting of death, accounting for 44.3% of CVD deaths in 2022, compared with 46.1% in 2021, 45.8% in 2020, and 42.3% during 2015–2019. This was followed by hospitals, where 35.8% of CVD deaths occurred in 2022, slightly higher than the 35.4% in 2021 and 34.5% in 2020, but still below the 39.3% observed during 2015–2019. Long-term care facilities accounted for 12.9% of deaths in 2022, an increase from 11.5% in 2021, and broadly consistent with the 13.2% reported in 2020 and 11.2% in the previous five-year period. CVD deaths occurring in hospice facilities continued to rise modestly, from 1.2% during 2015–2019, to 1.4% in 2020, 1.8% in 2021, and 1.9% in 2022. Home is the main setting of death for patients with cardiovascular diseases, underscoring the need to implement support and palliative care and improve targeted interventions for home-based CVD patients to enhance quality of life and care at the end of life. Full article

Background: The psychosocial needs of families involving a child with a life-limiting or life-threatening condition are well recognized. However, evidence-based interventions that address the needs of the entire family remain scarce, even though family health can be maintained and supported if interventions encompass each individual family member, as well as the family as a unit. The aim was to evaluate the family talk intervention (FTI), regarding family communication, and psychosocial health, for families involving a child with a life-limiting or life-threatening condition. Methods: This pre-post study without a control group involved families of children with a life-limiting or life-threatening condition receiving FTI at a pediatric hospital and a hospice in Sweden. The study is registered at clinicaltrials.gov (ID NCT05020158, date of registration: 23 August 2021). FTI is a family-based intervention with the goal of facilitating family communication about illness-related topics, e.g., prognosis, support parenting, and making all children’s needs visible. In total, 105 participants from 29 families were included. Surveys measuring self-assessed family communication and satisfaction, anxiety, resilience, parenting skills, and children’s mental problems were answered at three time points: baseline (before intervention), at the end of the intervention, and six months later. Changes over time were analyzed using linear mixed-effects models. Results: Significant improvements were reported in family communication, family satisfaction, parenting skills, and levels of anxiety over time. Children’s mental health problems were reduced over time regarding emotional symptoms, conduct problems, peer relationship difficulties, and hyperactivity. No changes were found regarding resilience. Conclusion: The results suggest that FTI contributes to improved family communication and psychosocial health for families involving a child with a life-limiting or life-threatening condition. This highlights the value of a systemic approach that actively involves all family members. Full article

Background/Objectives: The primary objective of this study was to assess the symptom profile and changes observed at discharge of lung cancer (LC) patients following comprehensive palliative care. The secondary objective was to evaluate potential differences between LCr patients and those with other cancer (OC) diagnoses. Methods: A consecutive sample of LC patients admitted to the acute palliative care unit (APCU) was prospectively assessed and compared with a random sample of patients with OC. All patients underwent comprehensive palliative care treatment. Demographic data, Karnofsky, referral sources, recent oncological treatments, and patient status at admission and discharge (on-treatment, off-treatment, or uncertain) were collected. At admission (T0) and at the time of discharge (TX), symptom burden was assessed using the Edmonton Symptom Assessment Scale (ESAS). Lastly, there was subsequent referral to next care settings (discharge home, home palliative care, hospice, other units). Results: A total of 159 patients with LC were compared with a similar sample of OC. In all patients a significant decrease in the number of “on therapy” patients were reported at discharge, and concomitantly the number of “off-therapy” patients increased (p < 0.0005) in comparison with the data recorded at admission. Dyspnea intensity was higher in group LC at T0 and TX (p < 0.0005), as well as pain intensity, which was significant at TX (p < 0.0005). A statistical difference in MDAS was also observed at TX (p = 0.034). LC patients had a lower overall survival (p = 0.034). Conclusions: Comprehensive palliative care in APCU provided relevant changes in symptom burden, with the potential to prevent inappropriate admissions to other hospital units and to reduce costs associated with non-specialist interventions. Full article

We present a case of a patient in their 80s initially presenting with myelodysplastic syndromes (MDS). Chromosomal analysis showed an abnormal female karyotype with a complex karyotype. Metaphase FISH confirmed four copies of KMT2A (MLL) in 24.5% [49/200] and amplification of KMT2A (MLL) with more than four copies in 22% [44/200]. FISH also revealed the presence of MYC (8q24) on the long arm of chromosome 2 at 2q33 locus, two copies of BCR on each homolog 22, and two additional copies of BCR on a derivative chromosome 22. Flow cytometric analysis revealed a population of aberrant myeloid blasts (15–17%). Bone marrow analysis showed hypercellular marrow with a significant increase in myeloid blasts (~50%) and trilineage dysplasia. Eventually, these findings were consistent with a final diagnosis of acute myeloid leukemia non-M3 and a complex karyotype, correlating with cytogenetics, flow cytometry, molecular, and clinical findings. The patient’s clinical course was marked by a rapid deterioration, including recurrent arrhythmias, hypoxic respiratory failure, and septic shock. Given their poor clinical status and adverse-risk molecular profile, care was transported to hospice. The presence of KMT2A amplification is a rare event in AML and is present in ~1% of AML and MDS cases. MYC translocation, KMT2A (MLL) amplification, and 5q/20q losses suggest secondary therapy-related AML and categorize this case in the adverse risk prognosis under the ELN 2022 guidelines. Full article

Background/Objectives: Evidence on postmortem grief care for family caregivers after home-based end-of-life care is limited. This scoping review aimed to map the content and effects of such interventions for adult family caregivers after home deaths. Methods: Following the Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews guidelines, we searched PubMed, Cumulative Index to Nursing and Allied Health Literature, Embase, Cochrane Library, and Ichushi-Web from database inception to 31 March 2024. We included English- or Japanese-language intervention studies performed in home and community settings. “Early” grief care was defined as (i) support initiated within 6 months after the death of a loved one and (ii) interventions initiated during caregiving that assessed bereavement outcomes within 6 months after the death of a loved one. Data were charted and descriptively summarized. Results: From 4766 records, six studies were selected for the review (five randomized controlled trials and one ongoing registry trial). Interventions varied from dyadic psychological sessions integrated into specialist palliative home care (DOMUS) to brief psychoeducation, structured family-physician consultations, general-practice bereavement management with screening and stepped care, remote monitoring with nurse coaching during home hospice care, with bereavement outcomes assessed at 6 months (SCH), and an online self-help program for widowed older adults. The effects were mixed. DOMUS showed a small but significant reduction in caregiver anxiety; SCH reduced caregiver burden during caregiving and improved bereavement adjustment at 6 months. Other interventions did not demonstrate a clear advantage in outcomes over usual care. Conclusions: Early grief care after home-based end-of-life care is heterogeneous. Need-responsive multicomponent models embedded in existing home and community care pathways warrant further theory-informed evaluation. Full article

Advance care planning (ACP) is fundamentally important for patients diagnosed with glioblastoma (GBM), a highly aggressive primary brain tumor with a grim prognosis. The urgency for early ACP is profoundly amplified by the characteristic, progressive neurocognitive decline that frequently impairs critical reasoning and leads to the loss of decisional capacity. ACP is a proactive process ensuring that future medical interventions align with a patient’s deeply held values and goals. Proactive ACP discussions are associated with less aggressive end-of-life (EOL) care, improved quality of life for patients and care partners, earlier hospice enrollment, and reduced psychological distress for surrogate decision makers. Despite guidelines recommending early integration, ACP prevalence remains low due to clinician discomfort with EOL discussions, a perceived lack of adequate training, and a widespread “culture of shared avoidance”. Experts recommend initiating ACP at or shortly after diagnosis, normalizing it as standard cancer care. Using structured communication strategies, such as the REMAP tool, and empowering allied health providers to champion these conversations are key integration strategies. Ultimately, early and skillful ACP is an ethical imperative that safeguards patient autonomy and minimizes the burden on loved ones. Full article

Family caregivers provide up to 90% of care in Alberta’s communities and play an essential role in sustaining the province’s health and social care systems, yet they remain under-recognized and insufficiently supported. To address this gap, we co-designed the Alberta Family Caregiver Strategy and Action Plan (2024–2025), a provincial framework developed through participatory research and collective impact methods. Guided by principles of co-production, equity, and lived experience, the project engaged over 500 stakeholders, including caregivers, healthcare providers, educators, employers, and policymakers, through Phase 1 interviews (health/community leaders, n = 44; Family and Community Support Services (FCSS), n = 47; navigation experts, n = 9), Phase 2 co-design team consultations, and Phase 3 sector roundtables (n = 52). Using reflexive thematic analysis, we identified four foundational caregiver strategies, Recognition, Partnership, Needs Assessment, and Navigation, and four enabling conditions: Education, Workplace Supports, Policy and Research and Data Infrastructure. These elements were synthesized into an eight-priority Alberta Caregiver Strategy and Action Plan Framework, a practical way to connect validated priorities with coordinated, measurable implementation across settings. Participants emphasized four key enablers essential to making caregiver inclusion more feasible and sustainable: education, workplace supports, policy infrastructure, and research and evaluation. Findings highlight strong cross-sector consensus that caregiver inclusion must be embedded into routine practice, supported by consistent policy, and reinforced through provincial coordination with local adaptation. The Alberta Family Caregiver Strategy provides a practical, evidence-informed plan for transforming fragmented supports into a coherent, caregiver-inclusive ecosystem that strengthens both caregiver well-being and system sustainability. Full article

Background/Objectives: Children in paediatric palliative care often face school attendance barriers due to complex health needs. This study describes post-training perceptions of a training program by a pediatric hospice team to prepare school care assistants to safely include children with complex conditions, focusing on procedural skills, knowledge of the child, and family partnership. Methods: Care assistants who completed a structured course at the Paediatric Palliative Care Centre, University Hospital of Padua (2023–2024), were surveyed immediately after training. The program combined classroom instruction with hands-on simulation using high-fidelity mannequins and standard devices, including suction, pulse oximetry, ventilation, enteral feeding, and tracheostomy care. It also covered modules on urgent and emergency management, as well as family communication. An anonymous online questionnaire gathered socio-demographic data, prior training, clinical tasks performed, self-efficacy levels, and open-ended feedback. Quantitative results were analyzed descriptively, while qualitative comments were subjected to thematic analysis. Results: Of 130 invited assistants, 105 participated (81%). Participants reported strong perceived confidence: 85% selected the upper end of the 5-point scale (“very” or “extremely”) for routine-management ability, and 60% selected these same response options for emergency-management ability. In the most severe events recalled, 60.5% of incidents were resolved autonomously, 7.6% involved contacting emergency services, and 3.8% involved community or hospice nurses. Seventy-five percent judged the course comprehensive; thematic analysis of 102 comments identified satisfaction, requests for regular refreshers, stronger practical components, and requests for targeted topics. Conclusions: Immediately after the session, participants tended to select the upper end of the self-assurance item for both routine and emergency tasks. Combining core emergency procedures with personalized, child-specific modules and family-partnership training may support safety, trust, and inclusion. Regular refreshers and skills checks are advised. Full article

Under the Eighth Amendment, prisons are legally mandated to provide constitutionally adequate standards of medical care to the incarcerated. But how do we make sense of a carceral structure in which the very delivery of medical care results in preventable death? This article offers a carceral case study of how prison medical care during the era of mass incarceration generates racialized mortality at the Louisiana State Penitentiary, also known as Angola Prison. By analyzing caselaw documents drawn from the docket of Lewis v. Cain, an ongoing lawsuit alleging inadequate medical care at Angola, this article seeks to address the limits of pursuing relief from prison conditions through legal interventions and reforms that are always yet to arrive. Rather than examining prison medical care and preventable death as problems to be reformed, this project aims to develop theoretical insight into how Angola Prison enacts “medical violence” against its captive population. This refers to the use of prison healthcare capacities to harm rather than affirm the lives of the incarcerated. As this case study argues, medical violence operates through organized abandonment, disregard, and carceral extraction, which together extend the life of the prison through the deaths of its captive population. Full article

Background/Objectives: Effective nutritional care is a critical component of oncology treatment. Behaviour change techniques (BCTs) are key elements that drive individual behaviour change and are commonly identified within clinical interventions and implementation strategies. Despite their relevance, the application of BCTs in oncology nutrition has not been systematically examined. This systematic review aimed to identify and synthesise the use of BCTs in nutrition interventions and their implementation strategies within adult oncology care. Methods: A search across 10 electronic databases was conducted from inception up to December 2024. Data extraction focused on intervention characteristics, plus implementation barriers, strategies, and outcomes, which were coded using relevant established taxonomies, i.e., Theoretical Domains Framework, Behaviour Change Techniques, and Proctor’s outcomes framework. Study quality was assessed using the QuADS tool. Results: After screening 4055 abstracts and 165 full texts, 38 articles representing 31 unique studies were included. Nutrition interventions (n = 31) spanned across risk screening/assessment, care planning/pathways, nutritional monitoring, and support guidelines. Among the 19 interventions that incorporated BCTs targeting patients and/or healthcare professionals (HCPs), 20 unique BCTs were identified across 97 instances. Separately, implementation strategies reported in 25 of the 38 articles included 96 BCT instances (18 unique) targeting HCPs. BCTs were frequently observed alongside positive outcomes across patient, service, and implementation levels. Conclusions: Application of BCTs in oncology nutrition practice remains implicit and inconsistent. For clinical practice, more explicit specifications of BCTs may support better integration of nutrition care in routine oncology settings. Future research is warranted to test the effectiveness of specific BCTs and their combinations. This can be supported by standardised reporting of intervention content and implementation strategies which can enable identification of patterns of success and optimise replicability. Full article