Palliative & Supportive Care最新文献

{"title":"Pitfalls in the conceptualization of primary palliative care and the WHO public palliative care framework.","authors":"Juan Esteban Correa-Morales, Rebecca Newell, Libby Sallnow","doi":"10.1017/S1478951525100229","DOIUrl":"https://doi.org/10.1017/S1478951525100229","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e118"},"PeriodicalIF":1.9,"publicationDate":"2025-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144303318","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"SAHD-10: Development and initial validation of a short version of the Schedule of Attitudes Toward Hastened Death based on a large multinational sample - CORRIGENDUM.","authors":"Kerstin Kremeike, Kathleen Boström, Thomas Dojan, Cristina Monforte-Royo, Barry Rosenfeld, Raymond Voltz, Christian Rietz, Julia Strupp","doi":"10.1017/S1478951525000410","DOIUrl":"10.1017/S1478951525000410","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e112"},"PeriodicalIF":1.9,"publicationDate":"2025-06-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144250316","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Situations in which caregivers and patients are likely to collude: Perspectives from caregivers of advanced cancer patients in Bangladesh- ERRATUM.","authors":"Jheelam Biswas, Salma Ahsan Khanam, Md Shamsudduha Tauhid, Shima Rani Sarker, Nahid Afsar, Nashid Islam","doi":"10.1017/S1478951525000380","DOIUrl":"10.1017/S1478951525000380","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e109"},"PeriodicalIF":1.9,"publicationDate":"2025-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144227275","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cross-cultural validation of the integrated palliative outcome scale for neurological patients (IPOS-Neuro S8) in multiple sclerosis patients.","authors":"Kim Dillen, Wiebke Müller, Martin Hellmich, Yasemin Goereci, Veronika Dunkl, Anne Dorr, Gereon R Fink, Raymond Voltz, Mevhibe Hocaoglu, Clemens Warnke, Heidrun Golla","doi":"10.1017/S1478951525000392","DOIUrl":"https://doi.org/10.1017/S1478951525000392","url":null,"abstract":"<p><strong>Objectives: </strong>Standardized measures to evaluate neurological patients in palliative care are missing. The Integrated Palliative Outcome Scale, a self-report tailored for neurological patients (IPOS Neuro-S8) helps identify symptom burden but lacks validation in German. This study aimed to validate the IPOS Neuro-S8 in severely affected multiple sclerosis (MS) patients.</p><p><strong>Methods: </strong>This validation study is a secondary analysis of data from a clinical phase II intervention study with severely affected MS patients. The original study enrolled German-speaking patients aged 18 with severe MS who receive an escalating immunotherapeutic agent and/or exhibit a high level of disability were recruited from the administrative district Cologne (#DRKS00021783). In this validation study, we evaluated construct, discriminant, and convergent validity, internal consistency, test-retest reliability, and sensitivity to change of the IPOS Neuro-S8, using the \"Hamburger Lebensqualitätsmessinstrument\" (HALEMS), and the Hospice and Palliative Care Evaluation supplemented by neurological symptoms (HOPE+) as comparison measures.</p><p><strong>Results: </strong>Data from 80 MS patients (mean age 56, SD = 11) were analyzed. Exploratory and confirmatory factor analyses revealed a 3-factor structure (<i>r</i> = 0.34-0.63), reflecting distinct clinical patterns, i.e., <i>breath-mouth connection, pain-sleep cycle</i>, and <i>nausea-vomiting link</i>. Significant convergent validity to hypothesized total score of the HOPE+ (<i>r_s</i>(78) = 0.71, <i>p</i> < 0.001) and good discriminant validity using the HALEMS total score (<i>r_s</i>(78) = 0.48, <i>p</i> < 0.001) were observed. Correlation with physical symptoms of the HALEMS was stronger than with nonphysical aspects. Internal consistency (Cronbach's α = 0.67) and test-retest reliability (intraclass coefficient = 0.75) were acceptable.</p><p><strong>Significance of results: </strong>IPOS Neuro-S8 displays promising psychometric properties for assessing palliative care symptoms in severe MS, a model for other severe neurological diseases due to MS's broad central nervous involvement, allowing findings to be transferable to other neurological diseases. A criterion for minimal clinically important difference was established to evaluate the sensitivity to change. Additional validation across different neurological conditions and disease severities is warranted to enhance generalizability and clinical utility.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e110"},"PeriodicalIF":1.9,"publicationDate":"2025-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144209913","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Narrative review of the impact on physicians of administering euthanasia or physician-assisted suicide and its association with moral distress.","authors":"Priyanka Pinto, Gerald Blaise Fogarty, David Kissane","doi":"10.1017/S1478951525000240","DOIUrl":"https://doi.org/10.1017/S1478951525000240","url":null,"abstract":"<p><strong>Background: </strong>Moral distress affects a significant proportion of clinicians who have received requests and participated in euthanasia or physician-assisted suicide (E/PAS) globally. It has been reported that personal and professional support needs are often unaddressed, with only a minority of those reporting adverse impacts seeking support.</p><p><strong>Objectives: </strong>This study aimed to review studies from 2017 to 2023 for the perceived risks, harms, and benefits to doctors of administering E/PAS and the ethical implications for the profession of medicine resulting from this practice.</p><p><strong>Methods: </strong>The search explored original research papers published in peer-reviewed English language literature between June 2017 and December 2023 to extend prior reviews. This included both studies reporting quantitative and qualitative data, with a specific focus on the impact on, or response from, physicians to their participation in E/PAS. The quantitative review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The qualitative review used the Critical Appraisal Skills Programme to assess whether studies were valid, reliable, and trustworthy.</p><p><strong>Results: </strong>Thirty studies (quantitative <i>n</i> = 5, qualitative <i>n</i> = 22, mixed methods <i>n</i> = 3) were identified and fulfilled acceptable research assessment criteria. The following 5 themes arose from the synthesis of qualitative studies: (1) experience of the request prior to administration; (2) the doctor's role and agency in the death of a patient; (3) moral distress post-administration; (4) workload and burnout; and (5) professional guidance and support. Both quantitative and qualitative studies showed a significant proportion of clinicians (45.8-80%) have been adversely affected by their involvement in E/PAS, with only a minority of those reporting adverse impacts seeking support.</p><p><strong>Significance of results: </strong>Participation in E/PAS can reward some and cause moral distress in others. For many clinicians, this can include significant adverse personal and professional consequences, thereby impacting the medical profession as a whole.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e115"},"PeriodicalIF":1.9,"publicationDate":"2025-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144209914","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Asymmetric facial edema with transdermal fentanyl: when listening to patients and caregivers helps to diagnose - ERRATUM.","authors":"Carolina Simões, Miguel Julião, Patrícia Calaveiras, Paula Câmara, Eduardo Bruera","doi":"10.1017/S1478951525000379","DOIUrl":"10.1017/S1478951525000379","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e114"},"PeriodicalIF":1.9,"publicationDate":"2025-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144209912","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The role of spiritual care management - Needs and resources in people with amyotrophic lateral sclerosis: Insights from a mixed-methods study.","authors":"Filipe Gonçalves, Margarida I Teixeira, Francisca Rego, Bruno Magalhães","doi":"10.1017/S1478951525000495","DOIUrl":"https://doi.org/10.1017/S1478951525000495","url":null,"abstract":"<p><strong>Objectives: </strong>To explore the spiritual needs and resources of People with Amyotrophic Lateral Sclerosis (PALS) at different stages of its trajectory and to characterize the experiences of the current state of the disease.</p><p><strong>Methods: </strong>A convergent mixed-methods study was conducted using qualitative and quantitative approaches. Participants were assessed using the clinical and sociodemographic data, ALSFRS-R (function assessment), and the GES Questionnaire to evaluate spiritual needs and resources. Data were collected through in-person or online interviews, transcribed and coded. The qualitative analysis was based on the content analysis method. Statistical analysis was performed using SPSS software. Both datasets were integrated during data analysis.</p><p><strong>Results: </strong>Twenty-four patients were interviewed, with a duration of the illness ranging from 1 year to 12 years. Participants were at different stages of functional dependence. Analyzing the open questions of the GES questionnaire, six categories were established related to the inner world of PALS: <i>Concern, Nuisance, Help, Support, Safety</i>, and <i>Valorization</i>. Contrary to what was hypothesized, no correlations were found between functionality and the spiritual dimensions. Spiritual needs and resources tend to vary with age, with younger ages presenting a more fragile spiritual dimension overall. Also, the intrapersonal and interpersonal dimension seems to play a central role in the lives of PALS. A negative correlation was identified between the feeling of connection to a supreme/transcendent reality and the level of educational qualifications.</p><p><strong>Significance of results: </strong>Spirituality often provides crucial emotional support, meaning, and resilience during challenging times. Despite its importance, it is often overlooked in clinical settings. The study emphasizes the need for personalized, holistic care, which should include spiritual care support, regardless of the functional state, highlighting the importance of addressing both intrapersonal and interpersonal domains, resources and needs from early phases. Allowing to create a structured care plan that meets patients' individual spiritual needs, that can contribute to a better QoL and reduce suffering.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e111"},"PeriodicalIF":1.9,"publicationDate":"2025-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144182876","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethics and moral empathy in end-of-life palliative care.","authors":"Ateya Megahed Ibrahim, Hassanat Ramadan Abdel-Aziz, Donia Elsaid Fathi Zaghamir, Nora H Elneblawi, Mohamed Abd El-Rahman Elsaied Elhoty, Rasha Kamal Sweelam, Heba Ahmed Osman Mohamed, Fathia Gamal Elsaid Hassabelnaby","doi":"10.1017/S1478951525000458","DOIUrl":"https://doi.org/10.1017/S1478951525000458","url":null,"abstract":"<p><strong>Objectives: </strong>End-of-life care poses significant ethical challenges for nurses, requiring a deep understanding of moral empathy and ethical decision-making. This study examines the impact of these factors on end-of-life decision-making among nurses in oncology and pain management units in Egypt.</p><p><strong>Methods: </strong>A cross-sectional design was employed to gather data from participants at a single point in time, facilitating an analysis of the relationships among ethical principles, moral empathy, and nursing practice. The study involved 246 registered nurses with at least 6 months of experience, selected through stratified random sampling from oncology and pain management units in Damietta, Egypt. These settings were chosen due to their central role in palliative care, as Damietta serves as a regional healthcare hub with specialized units addressing chronic and end-of-life conditions. This selection allows for an in-depth exploration of the ethical dimensions involved in providing palliative care. Informed consent was acquired from all participants, ensuring confidentiality and the right to withdraw from the study at any time.</p><p><strong>Results: </strong>The findings indicated that 72% of participants reported high levels of moral empathy, which positively correlated with ethical decision-making scores (<i>r</i> = 0.65, <i>p</i> < 0.01). However, 58% of the nurses also reported experiencing moderate to high levels of moral distress in various clinical scenarios. Additionally, nurses in supportive ethical climates experienced significantly lower moral distress than those in less supportive settings (<i>p</i> < 0.05).</p><p><strong>Significance of results: </strong>This study highlights the importance of integrating ethical training and moral empathy into nursing education and practice. The findings underscore the need for policy reforms to embed ethics and empathy training in nursing curricula and professional development programs, fostering ethical competence and enhancing patient care quality.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e108"},"PeriodicalIF":1.9,"publicationDate":"2025-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144182037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Strategies to prepare hospice providers to interact with adolescents with a parent in hospice.","authors":"William Grayson, Denice Kopchak Sheehan, Pamela S Stephenson, Kristen DeBois, Caitlin Sheehan","doi":"10.1017/S1478951525000446","DOIUrl":"10.1017/S1478951525000446","url":null,"abstract":"<p><strong>Objective: </strong>This study aimed to explore what is important for hospice providers to know when a seriously ill parent has adolescent children.</p><p><strong>Methods: </strong>The sample included 18 young adults (18-28 years old) whose parents died in hospice or palliative care while they were adolescents (12-18 years old). Semi-structured interviews were conducted virtually via Microsoft Teams. The interviews were audiotaped, transcribed verbatim, and analyzed using a thematic analysis. Themes emerged from the data and were determined by consensus.</p><p><strong>Results: </strong>The participants described a variety of skills that are important for hospice providers to know. They provided specific suggestions for hospice providers who seek to help adolescents navigate this critical time when their parents are dying or have recently died.</p><p><strong>Significance of results: </strong>These results can also be used to inform the development of interventions that assist hospice providers with strategies tailored to an adolescent's specific needs. Future research should investigate these topics with a larger, more diverse sample.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e113"},"PeriodicalIF":1.9,"publicationDate":"2025-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144181703","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The role of Islamic Ruqyah at end-of-life: An opportunity to provide metaphysical relief.","authors":"Megan Thorvilson, Faduma Warsame, Asmaa Ferdjallah","doi":"10.1017/S1478951525000434","DOIUrl":"10.1017/S1478951525000434","url":null,"abstract":"<p><strong>Objective: </strong>Practitioners in the West care for patients from diverse backgrounds. For Muslim patients who experience end-of-life in a foreign society, it is especially prudent to provide access to cultural and religiously appropriate practices. The Quran, the Islamic Holy book, is a key central aspect in the life of a Muslim. Ruqyah, that is - recitation of the Quran, is an often unrealized and misunderstood facet to a peaceful end-of-life for Muslim patients receiving palliative care. Ruqyah may offer comfort and be a source of relief for some Muslims but may be misunderstood as a lack of acceptance of impending death.</p><p><strong>Methods: </strong>This case report and single patient chart review describes the use of Ruqyah at the end-of-life and the role of Western practitioners as it relates to this practice. A critical analysis was undertaken to address the themes of hope, spirituality, and autonomy at end-of-life followed by a literature review.</p><p><strong>Results: </strong>Maintaining a sense of hope is a religious duty albeit one in which the outcome is not within the believer's hands. For Muslims, to hope is to believe - which is to accept death when it arrives. In a varied world with rich cultures, it is fundamental for end-of-life providers to incorporate cultural or religious rituals into their working knowledge of the dying process.</p><p><strong>Significance of results: </strong>This case demonstrates the importance of the basic understanding of Islamic end-of-life practices in conjunction with Muslim spiritual and chaplaincy resources.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e106"},"PeriodicalIF":1.9,"publicationDate":"2025-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144129036","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}