Palliative medicine reports最新文献

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Trends in Palliative Care Consultation for Extremely Premature Neonate Nonsurvivors in the Intensive Care Unit. 重症监护室极度早产儿非幸存者姑息治疗咨询的趋势。
IF 1.3
Palliative medicine reports Pub Date : 2026-06-01 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261454692
Natalie R Barnett, Mariah Tanious, Nicole McCoy, Caroline Schlee, Jessica Clarke-Pounder, Bethany Wolf, John Cahill, Joshua Arenth
{"title":"Trends in Palliative Care Consultation for Extremely Premature Neonate Nonsurvivors in the Intensive Care Unit.","authors":"Natalie R Barnett, Mariah Tanious, Nicole McCoy, Caroline Schlee, Jessica Clarke-Pounder, Bethany Wolf, John Cahill, Joshua Arenth","doi":"10.1177/26892820261454692","DOIUrl":"10.1177/26892820261454692","url":null,"abstract":"<p><strong>Background: </strong>Extremely premature infants (<28 weeks gestational age) have a greater risk of mortality and, when they survive, higher rates of significant neurological disability and need for medical care. As a result, extremely premature infants and their families often benefit from early involvement of palliative care.</p><p><strong>Objectives: </strong>To identify possible associations between palliative care consultation and length of life, code status, and manner of death of extremely premature versus nonextremely premature neonates.</p><p><strong>Methods: </strong>A retrospective, cohort study of premature infants with a terminal admission at two academic medical centers in the southeastern United States. The primary hypothesis was that extreme prematurity was associated with receipt of a palliative care consultation. Secondary hypotheses examined the association between extreme prematurity with (1) time from admission to death and (2) code status and manner of death.</p><p><strong>Results: </strong>Extreme prematurity was associated with a lower likelihood of a palliative care consultation (<i>p</i> < 0.001) than for older neonates. When consultations occurred, they were often within the final days or hours of life. Females had a 43% higher likelihood of a palliative care consultation than males when controlling for other factors (<i>p</i> < 0.001). Extremely premature infants had lower odds of having an allow natural death versus full code status than older infants (<i>p</i> = 0.008).</p><p><strong>Conclusions: </strong>Infants born extremely premature were less likely to receive palliative care consultation during a terminal admission than older preterm infants. Considering the higher burden of comorbidities and later nature of consultation, extremely premature infants may benefit from earlier and more frequent integration of palliative care.</p>","PeriodicalId":74394,"journal":{"name":"Palliative medicine reports","volume":"7 ","pages":"26892820261454692"},"PeriodicalIF":1.3,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13422723/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148655310","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Anticipatory Grief Among Family Caregivers of Terminally Ill Cancer Patients: A Multicenter Study Among Bangladeshi Population. 晚期癌症患者家属照顾者的预期悲伤:孟加拉人口的多中心研究。
IF 1.3
Palliative medicine reports Pub Date : 2026-05-31 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261455427
Nisha Mortuja Aktar, Md Irfan Rashid, Imtiaz Faruq, Salma Ahsan Khanam, Nashid Islam, Shima Rani Sarkar, Rifat Jahan, Wai Wai Mroy, Jheelam Biswas
{"title":"Anticipatory Grief Among Family Caregivers of Terminally Ill Cancer Patients: A Multicenter Study Among Bangladeshi Population.","authors":"Nisha Mortuja Aktar, Md Irfan Rashid, Imtiaz Faruq, Salma Ahsan Khanam, Nashid Islam, Shima Rani Sarkar, Rifat Jahan, Wai Wai Mroy, Jheelam Biswas","doi":"10.1177/26892820261455427","DOIUrl":"10.1177/26892820261455427","url":null,"abstract":"<p><strong>Objectives: </strong>This study aims to explore the response to anticipatory grief of family caregivers of terminally ill cancer patients in Bangladesh and to identify key factors influencing these grief dimensions.</p><p><strong>Methods: </strong>This study was conducted among 88 family caregivers of the terminally ill cancer patients from three palliative care units of tertiary-level hospitals in Bangladesh. Anticipatory grief dimensions were assessed by the Adult Attitude to Grief scale.</p><p><strong>Results: </strong>The majority of caregivers (75%) reported severe to high levels of emotional vulnerability, suggesting an increased risk of developing complicated grief in the future. Younger caregivers (≤35 years) were significantly more likely to feel overwhelmed by anticipatory grief. Additionally, caregivers with longer prognostic awareness demonstrated lower resilience and higher emotional vulnerability. However, caregivers' sex and their relationship with the patient were not significantly associated with anticipatory grief dimensions.</p><p><strong>Conclusion: </strong>Family caregivers of terminally ill cancer patients receiving palliative care in Bangladesh experience high levels of anticipatory grief. Early identification of vulnerable caregivers and provision of psychosocial support may enhance resilience and reduce caregiver burden.</p>","PeriodicalId":74394,"journal":{"name":"Palliative medicine reports","volume":"7 ","pages":"26892820261455427"},"PeriodicalIF":1.3,"publicationDate":"2026-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13554600/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148922107","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
How Palliative Care Clinicians Can Effectively Collaborate with Medical Interpreters to Improve Care for Patients Preferring a Language Other Than English. 姑息治疗临床医生如何有效地与医疗口译员合作,以改善对喜欢英语以外语言的患者的护理。
IF 1.3
Palliative medicine reports Pub Date : 2026-05-31 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261438545
Jessica Goldhirsch, Jane Crandall Kontrimas
{"title":"How Palliative Care Clinicians Can Effectively Collaborate with Medical Interpreters to Improve Care for Patients Preferring a Language Other Than English.","authors":"Jessica Goldhirsch, Jane Crandall Kontrimas","doi":"10.1177/26892820261438545","DOIUrl":"10.1177/26892820261438545","url":null,"abstract":"","PeriodicalId":74394,"journal":{"name":"Palliative medicine reports","volume":"7 ","pages":"26892820261438545"},"PeriodicalIF":1.3,"publicationDate":"2026-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13554690/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148922067","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Online Simulation in Palliative Care Education for Early-Career Nurses in Japan: A Pre-Post Exploratory Evaluation of Perceived Outcomes and Feasibility. 日本早期职业护士姑息治疗教育的在线模拟:对感知结果和可行性的前后探索性评估。
IF 1.3
Palliative medicine reports Pub Date : 2026-05-20 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261441692
Anri Inumaru, Tomoko Tamaki, Mayumi Tsujikawa, Miwa Skaguchi, Yoshiko Takeda, Jun Kako
{"title":"Online Simulation in Palliative Care Education for Early-Career Nurses in Japan: A Pre-Post Exploratory Evaluation of Perceived Outcomes and Feasibility.","authors":"Anri Inumaru, Tomoko Tamaki, Mayumi Tsujikawa, Miwa Skaguchi, Yoshiko Takeda, Jun Kako","doi":"10.1177/26892820261441692","DOIUrl":"10.1177/26892820261441692","url":null,"abstract":"<p><strong>Background: </strong>Early-career nurses often encounter difficulties in symptom management and communication with patients and families in palliative care. Although simulation-based education improves clinical competence, most programs require in-person participation. Evidence regarding the feasibility and outcomes of fully online simulation with immediate feedback for palliative care training remains limited.</p><p><strong>Objective: </strong>To examine the perceived outcomes and feasibility of a fully online simulation-based palliative care education program for early-career nurses in Japan.</p><p><strong>Design: </strong>Exploratory pre-post, single-arm study.</p><p><strong>Setting/subjects: </strong>The study was conducted in Japan and included 34 early-career nurses with 2-4 years of clinical experience who participated in a 90-minute online program delivered via Zoom.</p><p><strong>Measurements: </strong>The program comprised briefing, simulation, group work, and debriefing sessions focusing on total pain and communication. Outcomes were assessed at baseline, immediately post-intervention, and 1 month after using the Palliative Care Difficulties Scale, Nurses' Difficulty with Cancer Care Scale, Palliative Care Self-reported Practices Scale, and measures of confidence and satisfaction. Open-ended responses were analyzed descriptively.</p><p><strong>Results: </strong>Scores improved significantly from baseline in Palliative Care Difficulties Scale scores for symptom alleviation (<i>p</i> = 0.024, <i>d</i> = 0.41) and communication (<i>p</i> = 0.002, <i>d</i> = 0.57). Confidence in recognizing total pain (<i>p</i> = 0.008, <i>d</i> = 0.63) and communication (<i>p</i> = 0.011, <i>d</i> = 0.66) increased from baseline. Researcher-rated practice levels improved in 9 of 14 items, and mean satisfaction was 5.2/6. Qualitative findings indicated that most participants applied their learning in clinical practice.</p><p><strong>Conclusions: </strong>These findings suggest that the program may contribute to improvements in perceived difficulties and confidence, supporting its potential feasibility as an educational model.</p>","PeriodicalId":74394,"journal":{"name":"Palliative medicine reports","volume":"7 ","pages":"26892820261441692"},"PeriodicalIF":1.3,"publicationDate":"2026-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13422725/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148655270","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Associations of Specialist Palliative Care and Advance Care Planning with End-of-Life Outcomes in Kidney Transplant Recipients: A Single-Center Retrospective Study in Spain. 专科姑息治疗和预先护理计划与肾移植受者临终结局的关联:西班牙的一项单中心回顾性研究
IF 1.3
Palliative medicine reports Pub Date : 2026-05-19 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261446078
Beatriz Rodriguez Cubillo, Aurora Viloria, M Angeles Moreno de la Higuera, Paula Gutierrez, Daniel Parra, Natividad Romero, Arianne Aiffil, Isabel Pérez Flores, Maria Rosario Pino, Rocio Fernández Díaz, Ana Isabel Sánchez Fructuoso
{"title":"Associations of Specialist Palliative Care and Advance Care Planning with End-of-Life Outcomes in Kidney Transplant Recipients: A Single-Center Retrospective Study in Spain.","authors":"Beatriz Rodriguez Cubillo, Aurora Viloria, M Angeles Moreno de la Higuera, Paula Gutierrez, Daniel Parra, Natividad Romero, Arianne Aiffil, Isabel Pérez Flores, Maria Rosario Pino, Rocio Fernández Díaz, Ana Isabel Sánchez Fructuoso","doi":"10.1177/26892820261446078","DOIUrl":"10.1177/26892820261446078","url":null,"abstract":"<p><strong>Background: </strong>Evidence on specialist palliative care and advance care planning (ACP) for kidney transplant recipients (KTRs) near the end-of-life remains limited.</p><p><strong>Methods: </strong>We conducted a single-center retrospective observational study (electronic health record chart review) at a tertiary transplant center in Madrid, Spain. We included adult KTRs who died between January 1, 2021, and December 31, 2023, with sufficient end-of-life documentation; SARS-CoV-2-related deaths and deaths outside health care settings or with insufficient records were excluded. We compared end-of-life outcomes by specialist palliative care (PC) involvement and by ACP category. Outcomes included documented symptoms within 5 days before death, documented moderate-to-severe suffering within 48 hours (based on narrative chart descriptors), documented intent to prioritize symptom control in the last 24 hours, aggressive treatments within 7 days (intensive care unit/intermediate respiratory care unit admission, surgery/percutaneous intervention, renal replacement therapy, and/or intensive in-hospital management), place of death, and documented family positive perception of end-of-life care.</p><p><strong>Results: </strong>Fifty-nine deceased KTRs were analyzed; 20 (33.9%) received PC, and 39 (66.1%) did not. Compared with no PC, PC involvement was associated with a lower prevalence of documented symptoms within 5 days before death (5/20 [25.0%] vs. 38/39 [97.4%]; <i>p</i> < 0.001), documented moderate-to-severe suffering within 48 hours (0/20 [0%] vs. 36/39 [92.3%]; <i>p</i> < 0.001), and a higher documented intent to prioritize symptom control in the last 24 hours (20/20 [100%] vs. 22/39 [56.4%]; <i>p</i> < 0.001). PC involvement was also associated with fewer deaths in high-acuity settings and more home or hospice deaths (<i>p</i> < 0.001). Across ACP categories, comprehensive ACP was associated with fewer documented symptoms within 5 days (1/9 [11.1%] vs. 18/18 [100%] with no ACP; <i>p</i> < 0.001) and no documented moderate-to-severe suffering within 48 hours (0/9 [0%] vs. 18/18 [100%] with no ACP; <i>p</i> < 0.001).</p><p><strong>Conclusions: </strong>In this single-center retrospective study, PC involvement and more comprehensive ACP were associated with more favorable end-of-life outcomes among KTRs. Prospective studies are needed to confirm these associations.</p>","PeriodicalId":74394,"journal":{"name":"Palliative medicine reports","volume":"7 ","pages":"26892820261446078"},"PeriodicalIF":1.3,"publicationDate":"2026-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13422736/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148655214","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Shaping the Future: Recommendations from a Palliative Social Work Summit-A National Call to Action. 塑造未来:姑息性社会工作峰会的建议——全国行动呼吁。
IF 1.3
Palliative medicine reports Pub Date : 2026-05-13 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261446764
Arden O'Donnell, Shirley Otis-Green, Myra Glajchen, Jung Kwak, Vickie Leff, Terry Altilio, Karen Bullock, Jessica Curd, Abbie Latimer, Chris Onderdonk, Rachel Rusch, Danetta Sloan, Cara L Wallace, Stephanie P Wladkowski, Barbara L Jones
{"title":"Shaping the Future: Recommendations from a Palliative Social Work Summit-A National Call to Action.","authors":"Arden O'Donnell, Shirley Otis-Green, Myra Glajchen, Jung Kwak, Vickie Leff, Terry Altilio, Karen Bullock, Jessica Curd, Abbie Latimer, Chris Onderdonk, Rachel Rusch, Danetta Sloan, Cara L Wallace, Stephanie P Wladkowski, Barbara L Jones","doi":"10.1177/26892820261446764","DOIUrl":"10.1177/26892820261446764","url":null,"abstract":"<p><strong>Background: </strong>Palliative social workers play a critical role in serious illness care by addressing the biopsychosocial, spiritual, existential, and cultural needs of patients and families. Despite substantial professional infrastructure and contributions to equity and person-centered care, the profession faces persistent challenges related to recognition, funding, and visibility. These challenges are intensified by widening health inequities, policy threats to access to care, and national workforce shortages.</p><p><strong>Methods: </strong>To assess the current landscape and advance a coordinated professional agenda for palliative social workers in the United States, the <i>Shaping the Future: Advancing Palliative Social Work Summit</i> convened national leaders in palliative and health social work research, practice, and advocacy. A national survey of social workers providing serious illness care (<i>N</i> = 350), an ongoing scoping review, and a two-day convening of leaders representing 15 organizations were used to develop a consensus-driven professional agenda. Survey data and <i>Summit</i> discussions were analyzed descriptively and thematically, with findings validated by participants.</p><p><strong>Results: </strong>Participants articulated a unified vision for the future of palliative social work, identifying priorities including formal recognition of social workers as essential interprofessional team members, advancement of equity-driven care models, development of a diverse and sustainable workforce, and strengthened cross-organizational collaboration. Consensus emerged around the need for coordinated advocacy, shared resources, targeted research investment, and public-facing strategies to increase visibility and impact.</p><p><strong>Conclusion: </strong>The <i>Summit</i> demonstrates a model for advancing palliative social work through intentional alignment collective leadership and coordinated action. Aligning shared priorities positions the field to strengthen its professional foundation and expand its impact across practice research education and policy. Sustained investment in palliative social work leadership and infrastructure is essential to ensuring the profession's long-term viability and its capacity to meet the complex needs of people living with serious illness their families and communities.</p>","PeriodicalId":74394,"journal":{"name":"Palliative medicine reports","volume":"7 ","pages":"26892820261446764"},"PeriodicalIF":1.3,"publicationDate":"2026-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13422735/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148655313","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Landscape of Hospice Care for Children in a Midwestern State. 美国中西部一州儿童临终关怀的现况。
IF 1.3
Palliative medicine reports Pub Date : 2026-05-12 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261448977
Dominic Nardi, Peter Baenziger, Kortni Haupt, Shelby Dillon, Elisa Harris, A Ioana Cristea, Jessica A Zavadil
{"title":"The Landscape of Hospice Care for Children in a Midwestern State.","authors":"Dominic Nardi, Peter Baenziger, Kortni Haupt, Shelby Dillon, Elisa Harris, A Ioana Cristea, Jessica A Zavadil","doi":"10.1177/26892820261448977","DOIUrl":"10.1177/26892820261448977","url":null,"abstract":"<p><strong>Background: </strong>Although limitations in access to pediatric hospice care have been previously documented, factors have not been directly assessed at the level of individual agencies. This study seeks to better define the current state of pediatric hospice care in a midwestern state, Indiana, and describe the challenges that limit the quality and availability of care.</p><p><strong>Methods: </strong>We used hospice referrals originating from the two pediatric hospitals in the state, surveys of hospice agencies operating within the state, and case descriptions to demonstrate gaps in service, barriers, and requested support.</p><p><strong>Results: </strong>The most common barriers to care include a lack of pediatric-trained personnel or education, discomfort, low demand, and limited access to materials/equipment. Newborns (0-4 weeks) were underrepresented in referrals and in agencies that would accept infants. Rural regions are uniquely challenged with fewer hospice agencies providing services while receiving less-frequent pediatric hospice referrals, resulting in less experienced care.</p><p><strong>Conclusion: </strong>An opportunity for improvement identified was on-demand pediatric hospice education materials to address hospice provider workflow and infrequency of pediatric patients.</p>","PeriodicalId":74394,"journal":{"name":"Palliative medicine reports","volume":"7 ","pages":"26892820261448977"},"PeriodicalIF":1.3,"publicationDate":"2026-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13422748/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148655316","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Building Bridges in Palliative Care: Perspectives on a Community-Health Information Exchange. 在姑息治疗中建立桥梁:社区卫生信息交流的观点。
IF 1.3
Palliative medicine reports Pub Date : 2026-04-26 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261439668
Lauren Wan-Sai-Cheong, Courtney Petruik, Katrina Milaney
{"title":"Building Bridges in Palliative Care: Perspectives on a Community-Health Information Exchange.","authors":"Lauren Wan-Sai-Cheong, Courtney Petruik, Katrina Milaney","doi":"10.1177/26892820261439668","DOIUrl":"10.1177/26892820261439668","url":null,"abstract":"<p><strong>Introduction: </strong>Individuals experiencing homelessness or unstable housing conditions face many challenges in accessing palliative and end-of-life care. Although supports may exist in hospitals and community settings, service providers face communication barriers with different agencies and may struggle to connect clients with appropriate community and hospital resources. Community-health information exchanges (CHIEs) are one possible vehicle to enhance communication and understanding between service providers and recipients. They hold potential to support more personalized palliative and end-of-life care for individuals whose needs span multiple systems.</p><p><strong>Method: </strong>Participants were recruited through snowball sampling from a mobile palliative care team in Calgary, Alberta, Canada. In total, 11 service providers and 7 service recipients were interviewed. A vignette was created based on service recipient perspectives, and a thematic analysis was conducted to explore service providers' perspectives of an upcoming CHIE in Calgary. Following this, a hypothetical vignette, informed by service recipient and provider perspectives, envisioned how a CHIE could function in practice.</p><p><strong>Results: </strong>The fictional vignette, constructed from service recipient interviews, highlighted barriers to palliative care access such as silos in service provision and experiences of being labeled in the system. The thematic analysis showed three major themes: (1) an information exchange can have potential benefits, (2) organizational readiness and system design will shape the success of information exchange, and (3) equity, consent, and trust must remain central to implementation.</p><p><strong>Conclusion: </strong>Participants indicated that a CHIE, if guided by principles of consent and equity, could meaningfully impact palliative care access and continuity for structurally vulnerable populations. However, they also cautioned that without careful attention to privacy, power dynamics, and the risk of reducing individuals to labels, CHIEs could inadvertently reinforce inequities.</p>","PeriodicalId":74394,"journal":{"name":"Palliative medicine reports","volume":"7 ","pages":"26892820261439668"},"PeriodicalIF":1.3,"publicationDate":"2026-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13422727/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148655163","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Quality Improvement to Promote Advance Care Planning for Young Adults with Duchenne Muscular Dystrophy. 提高质量以促进青少年杜氏肌萎缩症患者的提前护理计划。
IF 1.3
Palliative medicine reports Pub Date : 2026-04-21 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261422094
Clara Mao, Lori Herbst
{"title":"Quality Improvement to Promote Advance Care Planning for Young Adults with Duchenne Muscular Dystrophy.","authors":"Clara Mao, Lori Herbst","doi":"10.1177/26892820261422094","DOIUrl":"10.1177/26892820261422094","url":null,"abstract":"<p><strong>Background: </strong>Duchenne muscular dystrophy (DMD) is a progressive neuromuscular disease. With improved life expectancy of patients with DMD, the need for advance care planning (ACP) has been identified by patients and providers. A quality improvement effort to address this gap was initiated at an academic children's hospital where patients are seen within a multidisciplinary neuromuscular clinic, which integrates palliative care into visits starting at age 18. The team followed outcome measures of (1) health care power of attorney (HCPOA) paperwork completion and (2) code status order documentation from baseline rates of 29% and 6%, respectively, between August 2024 and August 2025 for patients with DMD aged 18 or older.</p><p><strong>Methods: </strong>Identified key drivers included provider awareness of prior ACP conversations, documentation workflow, and patient readiness for conversations. Interventions included: creation of a DMD ACP Checklist, provider education, weekly e-mails, and access to state-specific ACP documents.</p><p><strong>Results: </strong>123 visits were reviewed over 13 months. Improvement interventions led to a centerline shift for both outcome measures, with an increase from 29% to 68% for HCPOA paperwork completion and from 6% to 72% for code status order documentation.</p><p><strong>Conclusions: </strong>This project demonstrated that many young adults with DMD were open to ACP conversations, as reflected in improved rates of HCPOA paperwork completion and code status order documentation. However, some families continued to express discomfort with topics surrounding end-of-life. Further exploration is needed to understand how to best address these challenges in order to provide goal-concordant care with disease progression.</p>","PeriodicalId":74394,"journal":{"name":"Palliative medicine reports","volume":"7 ","pages":"26892820261422094"},"PeriodicalIF":1.3,"publicationDate":"2026-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13422746/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148655236","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Palliative Care in Bolivia: A Scoping Review and Needs Assessment. 玻利维亚的姑息治疗:范围审查和需求评估。
IF 1.3
Palliative medicine reports Pub Date : 2026-03-27 eCollection Date: 2026-01-01 DOI: 10.1177/26892820261428648
Heather R Frank, Cambray Smith, Gabriela Antelo, Jamie L Conklin, Alyssa E Tilly
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