Palliative & Supportive Care最新文献

{"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}

{"title":"Mapping of care pathways in pediatric and adult palliative care in Spain: A case study.","authors":"Tania Ruiz-Gil, Francisco Ródenas-Rigla, Zoe Valero-Ramon, María Dolores Rodríguez Rabadán","doi":"10.1017/S1478951525000513","DOIUrl":"https://doi.org/10.1017/S1478951525000513","url":null,"abstract":"<p><strong>Objectives: </strong>This study aimed to map the actual care pathways for pediatric and adult palliative care (PC) patients at a hospital in the Region of Murcia (Spain) utilizing Process Mining (PM) techniques. The goal was to identify inefficiencies and areas for improvement in providing comprehensive and coordinated care to enhance patient outcomes.</p><p><strong>Methods: </strong>A retrospective review of anonymized clinical records was conducted, covering data from 2002 to 2021 for adult patients and from 2001 to 2021 for pediatric patients. The final dataset for adults comprised records from 85 patients and 2,696 episodes, and, for pediatric patients, the dataset included 57 individuals with 1,912 episodes. PM techniques (concretely, PMApp) facilitated the visualization and evaluation of actual care pathways, compared to theoretical models, highlighting bottlenecks and variabilities.</p><p><strong>Results: </strong>The analysis revealed distinct care pathways for adult and pediatric patients. Pediatric pathways showed inconsistencies with theoretical models due to variability in diseases and care needs, while adult pathways aligned better with expectations. Key inefficiencies included delays in shifting to home care and multiple visits to the hospital Emergency Department before referral to specialized teams. Simplified process models provided clearer insights into frequent care pathways and highlighted critical transition points, supporting optimization strategies.</p><p><strong>Significance of results: </strong>The findings underscore the utility of PM in enhancing care pathway transparency, identifying inefficiencies, and supporting data-driven process redesign. The study advocates for updating theoretical models and adopting structured data collection to reduce variability and improve PC delivery. These measures are critical for achieving consistent, patient-centered care across diverse healthcare settings.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e107"},"PeriodicalIF":1.9,"publicationDate":"2025-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144129001","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":"Caregiver accompaniment and non-abandonment in voluntary assisted dying: Phenomenological analysis.","authors":"Natasha Michael, Jeanette Liebelt, Xavier Symons, David Kissane","doi":"10.1017/S1478951525000501","DOIUrl":"https://doi.org/10.1017/S1478951525000501","url":null,"abstract":"<p><strong>Objectives: </strong>Caregivers play a significant role in the process of Voluntary Assisted Dying (VAD), reporting stances of support, opposition, or ambivalence. Though caregiver vulnerability is recognized, little is understood about how caregivers adjust when patients seek VAD. We sought to appreciate how bereaved caregivers of patients in organizations that did not participate in VAD processed and adapted to the challenges faced.</p><p><strong>Methods: </strong>We purposefully recruited caregivers from cases reviewed in a retrospective study exploring how VAD impacted the quality of palliative care. We further expanded sampling to maximize diverse views. We used qualitative interpretative phenomenological analysis to explore unique caregiver perspectives.</p><p><strong>Results: </strong>Twenty-three caregivers completed interviews. Most were female, Australian-born, retired, identified with no religion, bereaved for 1-3 years, and in a caregiving role for 1-5 years. Caregivers sought accompaniment and non-abandonment across all stages of VAD. Coping was enhanced through framing and reframing thought processes and reconciling values. Caregivers bore responsibility through heightened emotions and experienced isolation and anticipatory grief as they reconciled perceived societal attitudes. Caregivers additionally failed to understand the rationale behind organizational stances and were unable to articulate the moral conflicts that arose. Impartiality from professionals was valued for caregivers to sustain care for the patient.</p><p><strong>Significance of results: </strong>Despite feelings of vulnerability and isolation, caregivers demonstrated benevolence, courage, and self-compassion, reframing and accommodating their concerns. Professional accompaniment and non-abandonment necessitate solidarity and empowerment, without necessarily enabling VAD. Findings demonstrated the need for individuals and organizations to clearly articulate their willingness to continue to accompany patients, regardless of their position on VAD.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e105"},"PeriodicalIF":1.9,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144121217","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":"\"Optimizing empathic self-disclosures in dignity therapy: Improving the patient-provider relationship for more humanistic palliative care\".","authors":"Mila Yunita, Nanda Alfan Kurniawan, Husni Hanafi, Palasara Brahmani Laras, Fiki Prayogi, Hendra Pribadi, Mint Husen Raya Aditama","doi":"10.1017/S1478951525000306","DOIUrl":"https://doi.org/10.1017/S1478951525000306","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e104"},"PeriodicalIF":1.9,"publicationDate":"2025-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144050773","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":"Discriminatory health care reported by seriously ill LGBTQ+ persons and partners: Project Respect.","authors":"Cathy Berkman, Gary L Stein, William E Rosa, Kimberly D Acquaviva, David Godfrey, Imani Woody, Shail Maingi, Christian González-Rivera, Carey Candrian, Sean O'Mahony, Noelle Marie Javier","doi":"10.1017/S1478951524001913","DOIUrl":"10.1017/S1478951524001913","url":null,"abstract":"<p><strong>Objectives: </strong>Recent increases in homophobic and transphobic harassment, hate crimes, anti-lesbian, gay, bisexual, transgender, gender nonconforming, and queer (LGBTQ+) legislation, and discrimination in healthcare toward LGBTQ+ persons require urgent attention. This study describes seriously ill LGBTQ+ patients' and partners' experiences of discriminatory care delivered by healthcare providers.</p><p><strong>Methods: </strong>Qualitative data from a mixed-methods study using an online survey were analyzed using a grounded theory approach. Seriously ill LGBTQ+ persons, their spouses/partners and widows were recruited from a wide range of organizations serving the LGBTQ+ community. Respondents were asked to describe instances where they felt they received poor care from a healthcare provider because they were LGBTQ+.</p><p><strong>Results: </strong>Six main themes emerged: (1) disrespectful care; (2) inadequate care; (3) abusive care; (4) discriminatory care toward persons who identify as transgender; (5) discriminatory behaviors toward partners; and (6) intersectional discrimination. The findings provide evidence that some LGBTQ+ patients receive poor care at a vulnerable time in their lives. Transgender patients experience unique forms of discrimination that disregard or belittle their identity.</p><p><strong>Significance of results: </strong>Professional associations, accrediting bodies, and healthcare organizations should set standards for nondiscriminatory, respectful, competent, safe and affirming care for LGBTQ+ patients. Healthcare organizations should implement mechanisms for identifying problems and ensuring nondiscrimination in services and employment; safety for patients and staff; strategies for outreach and marketing to the LGBTQ+ community, and ongoing staff training to ensure high quality care for LGBTQ+ patients, partners, families, and friends. Policy actions are needed to combat discrimination and disparities in healthcare, including passage of the Equality Act by Congress.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e101"},"PeriodicalIF":1.9,"publicationDate":"2025-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12145487/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144054494","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The communication experiences of persons referred to specialist palliative care services and their carers: A descriptive phenomenological study.","authors":"Mohamad M Saab, Megan McCarthy, Varsha N Shetty, Mary Jane O'Leary, Josephine Hegarty, Fiona Kiely","doi":"10.1017/S1478951525000422","DOIUrl":"https://doi.org/10.1017/S1478951525000422","url":null,"abstract":"<p><strong>Objectives: </strong>Effective communication during specialist palliative care (PC) referral is linked to improved health outcomes. Initiating a conversation about PC is difficult and poor communication can lead to stigma. The aim of this descriptive phenomenological study was to explore the communication experiences of persons referred to specialist PC services and their carers and explore strategies to improve such experiences.</p><p><strong>Methods: </strong>Purposive sampling was used to recruit 17 participants who were either receiving specialist PC and/or caring for someone who was receiving specialist PC. Participants were recruited from a hospice. Inductive thematic analysis was conducted.</p><p><strong>Results: </strong>Four themes were identified: (i) The why, who, what, when, where, and how of PC referral; (ii) initial thoughts and feelings about referral to PC; (iii) enhancing the communication of PC referral; and (iv) addressing practical needs during PC referral. Participants were referred either through their general practitioner or oncologist. Initially, participants linked PC referral to death. This perception changed when participants started availing of the services. Compassion, empathy, hope, privacy, in-person communication, individualized referral, and information dosing were identified as building blocks for effective communication. Participants stressed the importance of raising public awareness of PC and addressing the practical needs of individuals being referred.</p><p><strong>Significance of results: </strong>The communication of PC referral should be tailored to meet the individual needs of patients and carers. Delivering clear and simple information is important to help patients and carers understand and accept the referral.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e103"},"PeriodicalIF":1.9,"publicationDate":"2025-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144034539","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":"Motivations for choosing \"home\" as one's preferred place of death: A scoping review.","authors":"Taylor D Pike, Matthew J Sargent, Shannon Freeman","doi":"10.1017/S147895152500029X","DOIUrl":"10.1017/S147895152500029X","url":null,"abstract":"<p><strong>Objectives: </strong>While dying at home is often described as desirable, to our knowledge, no reviews have focused specifically on people's reasons for wanting to die at home. This review describes the breadth of what is known about motivations, attitudes, ideas, and reasons underlying the decision to choose \"home\" as one's preferred placed of death.</p><p><strong>Methods: </strong>This review was guided by a scoping review methodology following a five-stage approach including: (1) identify the research question, (2) identify relevant studies, (3) select studies based on inclusion/exclusion criteria, (4) chart the data, and (5) summarize and report the results.</p><p><strong>Results: </strong>Seventeen articles were identified that met inclusion/exclusion criteria and discussed motivations underlying people's desires to die at home. Thirty-five percent of studies were from Canada (<i>n</i> = 6/17), 29% were from Europe (<i>n</i> = 5/17), and 29% were from Asia (<i>n</i> = 5/17). Most studies (<i>n</i> = 11/17) used methods that involved collecting and/or analyzing interview data from participants, while the remaining studies (<i>n</i> = 6/17) used methods that involved administering and analyzing surveys or questionnaires. Characteristics of participants varied, but most commonly, studies included people with advanced illnesses who were nearing death (35% of studies, <i>n</i> = 6/17). Motivations for choosing a home death included desires to preserve a sense of self, factors relating to interpersonal relationships, and topics such as culture, religion, socioeconomic status, living situation, and lived experience.</p><p><strong>Significance of results: </strong>The many interconnected reasons that lead people to choose a home death vary, as individuals have a range of motivations for choosing to die at home, which are highly influenced by contextual and cultural factors. Ultimately, this review will provide a comprehensive description of factors which may inform end-of-life planning, highlighting needs to be considered when planning the preferred location of a death.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e102"},"PeriodicalIF":1.9,"publicationDate":"2025-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144006359","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 impact of caregiver burden and associated factors on trait anger levels and anger expression styles in family caregivers of palliative care patients.","authors":"Yasemin Çekiç, Sema Üstündağ, Yasemin Kurtoğlu, Gamze Ünver","doi":"10.1017/S1478951525000318","DOIUrl":"https://doi.org/10.1017/S1478951525000318","url":null,"abstract":"<p><strong>Objectives: </strong>This study aimed to examine the impact of perceived caregiver burden and associated factors on the anger levels and anger expression styles of family caregivers for patients receiving palliative care at home.</p><p><strong>Methods: </strong>This cross-sectional and exploratory correlational type study was conducted with 343 family caregivers. Data were collected face-to-face between March and September 2022 using a Caregiver and Care Recipient Information Form, the Burden Interview, and the Trait Anger and Anger Expression Scale.</p><p><strong>Results: </strong>There was a significant from very weak to weak correlation between the caregiver burden scores and trait anger, anger-in, anger-out, and anger control scores. The caregiver burden increased trait anger, anger-in, and anger-out while decreasing anger control. The caregiver burden, daily caregiving hours, presence of another dependent at home, presence of a separate room for the care recipient, income level, chronic illness of caregiver, duration of caregiving per month, and care recipient gender explained 17.2% of the total variation in anger control scores.</p><p><strong>Significance of results: </strong>The caregiver burden levels and anger expression styles of family caregivers vary depending on the characteristics of both the caregiver and the care recipient. Family members may experience an increase in perceived caregiver burden, which can lead to elevated levels of trait anger, suppression of anger, and reduced anger control. Healthcare professionals should monitor the family caregivers' caregiver burden and anger levels. Family caregivers should be encouraged and given opportunities to express their feelings and thoughts about caregiving. Strategies aimed at reducing the caregiver burden and coping with feelings of anger should be planned for the family members of patients receiving palliative care at home.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e100"},"PeriodicalIF":1.9,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144041163","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}