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"Palliative"
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Multinational Association of Supportive Care in Cancer (MASCC) 2020 clinical practice recommendations for the management of severe dermatological toxicities from checkpoint inhibitors
Immune checkpoint inhibitors (ICIs) frequently result in cutaneous immune-related adverse events (IrAEs). Although the majority of these events are mild-to-moderate in severity, up to 5% are severe, which may lead to morbidity and dose interruption or discontinuation of ICI therapy. In addition, up to 25% of dermatologic IrAEs are corticosteroid-refractory or corticosteroid-dependent. These 2020 MASCC recommendations cover the diagnosis and management of cutaneous IrAEs with a focus on moderate-to-severe and corticosteroid-resistant events. Although the usage of immune-suppressive therapy has been advocated in this setting, there is a lack of randomized clinical trial data to provide a compelling level of evidence of its therapeutic benefit.
Journal Article
Randomized Trial of Communication Facilitators to Reduce Family Distress and Intensity of End-of-Life Care
Abstract
Rationale
Communication with family of critically ill patients is often poor and associated with family distress.
Objectives
To determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care.
Methods
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.
Measurements and Main Results
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).
Conclusions
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).
Journal Article
The heart of palliative care is relational: a scoping review of the ethics of care in palliative medicine
Background
Palliative care, perhaps more than any subspecialty in healthcare, is deeply relational and engages patients and families at times of great vulnerability. Ethics of care, or relational ethics, developed through contributions from feminist ethics, offers conceptual tools and ways of thinking that seem especially suited to palliative care practice.
Aim
To identify and describe studies and theoretical analyses applying the ethics of care to palliative care (both adult and paediatric), specifically, its use to guide and improve practice and education for palliative care practitioners.
Design
We conducted a scoping review of six databases covering clinical, social science and normative ethics scholarship and conducted a thematic analysis of the findings and ethical discussions or arguments.
Data sources
Databases searched included PubMed, CINAHL, PsychINFO, EMBASE, Web of Science and Philosopher’s Index from 1982 to November 2024.
Results
30 publications meeting our inclusion criteria were identified. Major themes reflected the relational obligations, attributes and character traits ideally developed in palliative care providers in their work and relationships with patients and families, including responsiveness, connectedness and hope, as well as in caring for ourselves and each other on palliative care teams. An emerging literature recognises the special guidance for palliative care for children.
Conclusions
Clinical and ethical scholarship in palliative care reveals a valuable but still underexplored connection between the ethical commitments within the ethics of care tradition and palliative care training and practice. Ethics of care addresses important gaps in training, particularly having to do with practitioners’ relationships and ways of being with patients, families, colleagues and themselves.
Journal Article
Integrated palliative care improves the quality of life of advanced cancer patients
Objective
The objective of this research is to investigate the efficacy of integrated palliative care in enhancing advanced cancer patients' quality of life, alleviating pain, and improving psychological well-being through the development of a multidimensional hospice care model.
Methods
This study involved 150 advanced cancer patients who received palliative care at our institution from January 2020 to December 2023. Participants were randomly assigned into two groups: the control group (
n
= 75) received standard care, while the treatment group (
n
= 75) received integrated palliative care, which included pain management strategies, psychological support, and family involvement. The quality of life of both groups was assessed pre- and post-intervention using the EORTC QLQ-C30 scale, which evaluates physical, emotional, and social functioning among other indicators. Mental health was assessed through the GAD-7 (Generalized Anxiety Disorder Scale) and PHQ-9 (Patient Health Questionnaire-9) to measure anxiety and depression levels. Furthermore, family members' satisfaction and support regarding the patient care process were evaluated using a tailored family satisfaction questionnaire.
Results
There was no statistically significant difference in age, gender, and tumor type among the treatment group (
P
> 0.05). Prior to the intervention, there were no statistically significant differences between the two groups in EORTC QLQ-C30 scores, GAD-7 and PHQ-9 assessments, or family satisfaction (
P
> 0.05). Post-intervention, the treatment group exhibited significantly higher quality of life scores compared to the control group, alongside significantly lower anxiety and depression scores, and notably higher family satisfaction, all of which were statistically significant (
P
< 0.05).
Conclusion
Integrated palliative care demonstrated substantial benefits in enhancing advanced cancer patients' quality of life, alleviating pain, and improving overall psychological health. The findings advocate for the integration of hospice care as a vital component of standard clinical practice and recommend its broader implementation across various departments to provide more compassionate care for patients and their families.
Journal Article
Palliative care : a guide for health social workers
\"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.
Book
Exploring pediatric palliative care in Luxembourg: a mixed-methods study
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.
Journal Article