Palliative & Supportive Care最新文献

{"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}

{"title":"Accurate prognostic awareness is associated with increased emotional distress in Latino patients with advanced cancer.","authors":"Pedro E Pérez-Cruz, María Jesús San Martín, Josefa Palacios, Laura Tupper-Satt, Marcela González-Otaíza, Paula Repetto","doi":"10.1017/S1478951525000252","DOIUrl":"10.1017/S1478951525000252","url":null,"abstract":"<p><strong>Objectives: </strong>To describe the frequency of prognostic awareness (PA) in a population of advanced cancer patients in a Latino community and to explore the relationship between accurate PA with emotional distress and other covariates.</p><p><strong>Methods: </strong>In this cross-sectional study performed in Puente Alto, Chile, advanced cancer patients in palliative care completed a survey that included a single question to assess PA (Do you believe your cancer is curable? yes/no). Patients reporting that their cancer was not curable were considered as having accurate PA. Demographics, emotional distress, quality of life, and patient perception of treatment goals were also assessed. Analyses to explore associations between PA and patient variables were adjusted.</p><p><strong>Results: </strong>A total of 201 patients were included in the analysis. Mean age was 65, 50% female. One hundred and three patients (51%) reported an accurate PA. In the univariate analysis, accurate PA was associated with not having a partner (<i>p</i> = 0.012), increased emotional distress (<i>p</i> = 0.013), depression (<i>p</i> = 0.003), and were less likely to report that the goal of the treatment was to get rid of the cancer (<i>p</i> < 0.001). In the multivariate analysis, patients with accurate PA had higher emotional distress or depression, were less likely to have a partner, and to report that the goal of the treatment was to get rid of the cancer.</p><p><strong>Significance of results: </strong>Half of a population of Latino advanced cancer patients reported an accurate PA. Accurate PA was associated with increased emotional distress, which is similar to what has been reported in other countries. Weaknesses in prognostic disclosure by clinicians, local cultural factors, or higher motivation to seek prognostic information among distressed cancer patients could explain this association. Strategies to emotionally support patients when discussing prognostic information should be implemented.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e97"},"PeriodicalIF":1.9,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144041846","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":"Building dignity at the bedside: A reflective clinical model for clinical encounters.","authors":"Miguel Julião, Loredana Buonaccorso","doi":"10.1017/S1478951525000343","DOIUrl":"https://doi.org/10.1017/S1478951525000343","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e94"},"PeriodicalIF":1.9,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143990832","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":"Exploring the landscape of palliative care provision for black patients with hematologic cancers: A scoping review.","authors":"Osborn Owusu Ansah, Silas Selorm Daniels-Donkor, Leila Ledbetter, Matthew LeBlanc, Sophia K Smith","doi":"10.1017/S1478951525000471","DOIUrl":"10.1017/S1478951525000471","url":null,"abstract":"<p><strong>Objectives: </strong>Patients with cancer benefit greatly from receiving palliative care (PC), improving their overall survival and quality of life. Despite its benefits, PC is underutilized among patients with hematologic malignancies (HMs), particularly among Black patients, who face higher symptom burdens and lower survival rates compared to White patients. The purpose of this review was to identify and describe what is known about PC use among Black HM patients in the United States.</p><p><strong>Methods: </strong>This review was conducted using the Joanna Briggs Institute approach for scoping reviews and included a search of the databases MEDLINE (PubMed), Embase (Elsevier), Scopus and Web of Science (Clarivate). The search was developed and conducted by a professional medical librarian in consultation with the author team and focused on keywords such as Black/African American patients, HM, and PC. Articles were screened and selected based on predefined inclusion criteria and carried out using Covidence software for systematic review management.</p><p><strong>Results: </strong>Seven publications were included in the final sample and most used quantitative methods and data from large national databases such as the National Cancer Database. Four of the studies reported that Black patients with HM were less likely to receive or use PC compared to White patients. Access to PC was associated with better outcomes, such as lower hospital charges and a reduced likelihood of dying within 30 days of initiating palliative radiotherapy.</p><p><strong>Significance of the results: </strong>This scoping review highlights ongoing inequities in the use of PC among Black patients with HM which mirrors trends in patients with solid cancers. Future studies should be conducted to understand the determinants of these disparities and to also build testable interventions to improve PC use within this underserved population.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e96"},"PeriodicalIF":1.9,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144015937","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}