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Communication with family of critically ill patients is often poor and associated with family distress. To determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care. We conducted a randomized trial at two hospitals. Eligible patients had a predicted mortality greater than or equal to 30% and a surrogate decision maker. Facilitators supported communication between clinicians and families, adapted communication to family needs, and mediated conflict. Outcomes included depression, anxiety, and post-traumatic stress disorder (PTSD) among family 3 and 6 months after ICU and resource use. We identified 488 eligible patients and randomized 168. Of 352 eligible family members, 268 participated (76%). Family follow-up at 3 and 6 months ranged from 42 to 47%. The intervention was associated with decreased depressive symptoms at 6 months (P = 0.017), but there were no significant differences in psychological symptoms at 3 months or anxiety or PTSD at 6 months. The intervention was not associated with ICU mortality (25% control vs. 21% intervention; P = 0.615) but decreased ICU costs among all patients (per patient: $75,850 control, $51,060 intervention; P = 0.042) and particularly among decedents ($98,220 control, $22,690 intervention; P = 0.028). Among decedents, the intervention reduced ICU and hospital length of stay (28.5 vs. 7.7 d and 31.8 vs. 8.0 d, respectively; P < 0.001). Communication facilitators may be associated with decreased family depressive symptoms at 6 months, but we found no significant difference at 3 months or in anxiety or PTSD. The intervention reduced costs and length of stay, especially among decedents. This is the first study to find a reduction in intensity of end-of-life care with similar or improved family distress. Clinical trial registered with www.clinicaltrials.gov (NCT 00720200).

Patients with advanced cancer have reduced quality of life, which tends to worsen towards the end of life. We assessed the effect of early palliative care in patients with advanced cancer on several aspects of quality of life. The study took place at the Princess Margaret Cancer Centre (Toronto, ON, Canada), between Dec 1, 2006, and Feb 28, 2011. 24 medical oncology clinics were cluster randomised (in a 1:1 ratio, using a computer-generated sequence, stratified by clinic size and tumour site [four lung, eight gastrointestinal, four genitourinary, six breast, two gynaecological]), to consultation and follow-up (at least monthly) by a palliative care team or to standard cancer care. Complete masking of interventions was not possible; however, patients provided written informed consent to participate in their own study group, without being informed of the existence of another group. Eligible patients had advanced cancer, European Cooperative Oncology Group performance status of 0–2, and a clinical prognosis of 6–24 months. Quality of life (Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being [FACIT-Sp] scale and Quality of Life at the End of Life [QUAL-E] scale), symptom severity (Edmonton Symptom Assessment System [ESAS]), satisfaction with care (FAMCARE-P16), and problems with medical interactions (Cancer Rehabilitation Evaluation System Medical Interaction Subscale [CARES-MIS]) were measured at baseline and monthly for 4 months. The primary outcome was change score for FACIT-Sp at 3 months. Secondary endpoints included change score for FACIT-Sp at 4 months and change scores for other scales at 3 and 4 months. This trial is registered with ClinicalTrials.gov, number NCT01248624. 461 patients completed baseline measures (228 intervention, 233 control); 393 completed at least one follow-up assessment. At 3-months, there was a non-significant difference in change score for FACIT-Sp between intervention and control groups (3·56 points [95% CI −0·27 to 7·40], p=0·07), a significant difference in QUAL-E (2·25 [0·01 to 4·49], p=0·05) and FAMCARE-P16 (3·79 [1·74 to 5·85], p=0·0003), and no difference in ESAS (−1·70 [−5·26 to 1·87], p=0·33) or CARES-MIS (−0·66 [−2·25 to 0·94], p=0·40). At 4 months, there were significant differences in change scores for all outcomes except CARES-MIS. All differences favoured the intervention group. Although the difference in quality of life was non-significant at the primary endpoint, this trial shows promising findings that support early palliative care for patients with advanced cancer. Canadian Cancer Society, Ontario Ministry of Health and Long Term Care.

PurposeEarly palliative care (EPC) has shown a positive impact on quality of life (QoL), quality of care, and healthcare costs. We evaluated such effects in patients with advanced gastric cancer.MethodsIn this prospective, multicenter study, 186 advanced gastric cancer patients were randomized 1:1 to receive standard cancer care (SCC) plus on-demand EPC (standard arm) or SCC plus systematic EPC (interventional arm). Primary outcome was a change in QoL between randomization (T0) and T1 (12 weeks after T0) in the Trial Outcome Index (TOI) scores evaluated through the Functional Assessment of Cancer Therapy-Gastric questionnaire. Secondary outcomes were patient mood, overall survival, and family satisfaction with healthcare and care aggressiveness.ResultsThe mean change in TOI scores from T0 to T1 was − 1.30 (standard deviation (SD) 20.01) for standard arm patients and 1.65 (SD 22.38) for the interventional group, with a difference of 2.95 (95% CI − 4.43 to 10.32) (p = 0.430). The change in mean Gastric Cancer Subscale values for the standard arm was 0.91 (SD 14.14) and 3.19 (SD 15.25) for the interventional group, with a difference of 2.29 (95% CI − 2.80 to 7.38) (p = 0.375). Forty-three percent of patients in the standard arm received EPC.ConclusionsOur results indicated a slight, albeit not significant, benefit from EPC. Findings on EPC studies may be underestimated in the event of suboptimally managed issues: type of intervention, shared decision-making process between oncologists and PC physicians, risk of standard arm contamination, study duration, timeliness of assessment of primary outcomes, timeliness of cohort inception, and recruitment of patients with a significant symptom burden.Clinical trial registrationClinicalTrials.gov (NCT01996540).

Background An estimated 170,000 children in the WHO European Region have no access to palliative care annually. In Luxembourg, there is a lack of data on children needing palliative care, and the existing structure appears limited. This study aims to assess the current state of pediatric palliative care in Luxembourg. Methods We used a parallel convergent mixed-methods approach, collecting qualitative and quantitative data simultaneously and analyzing them independently. Snowball and purposive sampling methods were employed. The qualitative data, including documents, email correspondence, and open-ended interviews with participants caring for children with life-limiting or life-threatening conditions, followed the COREQ guidelines and were analyzed using thematic analysis. Quantitative data were analyzed using both descriptive and inferential statistical methods. Results The analysis highlights a significant gap in the provision of care at all levels of pediatric palliative care in Luxembourg. Approximately 500 to 600 children up to 19 years old require palliative care each year, which exceeds previous estimates. Existing legal frameworks are predominantly designed for adults and end-of-life care, and do not sufficiently address the holistic needs of children requiring palliative care and their families. Homecare services are in the early development phase, and specialized pediatric palliative care options are limited across all levels. A pediatric palliative care course, set to be introduced in 2025 for university pediatric nursing students as outlined in the national plan, aims to address some of these gaps by developing competencies. However, until sufficient specialized care is established, many children are transferred to neighboring countries where there are better resources and expertise or remain at home, receiving limited services. Conclusion This study presents, for the first time, data on pediatric palliative care in Luxembourg, with a focus on service availability, the legal framework, and the estimated number of children requiring care. The findings highlight the urgent need for a structured pediatric palliative care service to address this country’s growing demand and unmet needs. In addition, it is essential to support the implementation of the “ National Plan for End of Life and Palliative Care ” from 2023 to 2026, which includes a dedicated focus on children.

\"This book is an innovative, practical approach to equipping health social workers with theoretical and clinical tools to integrate palliative care principles into practice with individuals, families, teams and institutions. The editors and authors seek to honor the coherence of palliative care and social work, re- awakening the potential of thousands of health social workers to lead and inform the IOM mandate for high quality, humane patient- centered family focused care\"-- Provided by publisher.

Palliative care philosophy is based on a holistic approach to patients, but research shows that possibilities for living up to this philosophy seem limited by historical and administrative structures. From the nurse perspective, this article aims to explore nursing practice in specialised palliative homecare, and how it is influenced by organisational and cultural structures. Qualitative, semi-structured interviews with nine nurses were conducted, inspired by Bourdieu. The findings showed that nurses consolidate the doxa of medicine, including medical-professional values that configure a control-oriented, positivistic approach, supported by the organising policy for clinical practice. Hierarchically, nurses were positioned under doctors: medical rounds functioned as a structuring structure for their working day. They acted as medical assistants, and the prevailing medical logic seemed to make it difficult for nurses to meet their own humanistic ideals. Only short time slots allowed nurses to prioritise psychosocial needs of patients and relatives. Point-of-actions had high priority, added financial resources and ensured that budgets were allocated. Weekly visits made it possible for nurses to measure, control and govern patients’ drugs and symptoms which was a necessity for their function as medical assistants. The findings challenge nurses to take on an ethical point of view, partly to ensure that patients and their families receive good palliative care focusing on more than medical issues and logic, and partly to strengthen the nurses’ profession in the palliative field and help them implement palliative care philosophy in practice.