Journal of Palliative Care最新文献

{"title":"Invisible Pillars With Hidden Burdens: A Scoping Review on the Challenges of Informal Caregivers for Older Adults in Home-Based Palliative Care.","authors":"Swasati Handique, Soeun Jang, Michael Bennett, Scott D Ryan","doi":"10.1177/08258597251348262","DOIUrl":"https://doi.org/10.1177/08258597251348262","url":null,"abstract":"<p><p><b>Objective:</b> This study aimed to show evidence from existing literature about the experiences and challenges managed by informal caregivers of older adults in home-based palliative care. <b>Methods:</b> A scoping review was conducted using Arksey and O'Malley's framework. Eight electronic databases, Academic Search Complete, AgeLine, APAPsycArticles, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete, Global Health, Medline, PsycINFO, Social Work Abstracts, and Web of Science from the EBSCO platform were searched. After full text review, data were extracted and charted. Major themes were established following thematic content analysis. <b>Results:</b> A total of 3859 records were yielded through the electronic database search. After duplicate removal and screening of titles/abstracts and full-texts, a total of 11 studies were included. From these 11 studies, themes were identified: (1) exhaustion and health deterioration, (2) the strain of multifaceted obligations, (3) insufficient medical support and training for caregivers, (4) lack of respite care, and (5) financial strain in caregiving. There is a need for large-scale evaluations of interventions and informal caregivers should be engaged in this process. <b>Conclusions:</b> There is a need to recognize and support a wide array of informal caregivers socially and financially to help them obtain more services and resources. Policymakers need to make more accessible resources and the existing benefits more customized to the unique needs of the informal caregivers of home-based palliative patients.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251348262"},"PeriodicalIF":1.3,"publicationDate":"2025-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144287063","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":"Palliative Care Knowledge, Attitudes, and Self-Competence of Nurses Working in Hospital Settings.","authors":"Mona Ibrahim Hebeshy, Darcy Copeland","doi":"10.1177/08258597251341981","DOIUrl":"https://doi.org/10.1177/08258597251341981","url":null,"abstract":"<p><p>ObjectiveWith the growing need to integrate palliative care into healthcare systems, nurses in hospital settings often provide care for patients with life-limiting conditions, many of whom lack formal education in palliative care. This study aimed to assess knowledge, attitude, and self-competence of nurses working in hospital settings regarding palliative care.MethodsThis study evaluated 129 hospital nurses in Colorado. It used the Palliative Care Quiz for Nursing, the Frommelt Attitude Toward Care of the Dying Scale, and the Palliative Care Nursing Self-Competency Scale to assess their knowledge, attitudes, and perceived self-competence.ResultsThe mean scores were knowledge, 11.69 (SD = 2.8); attitudes, 123.35 (SD = 11.44); and self-competence, 167.5 (<i>SD</i> = 31.5). The lowest scores were in psychosocial and spiritual care. Nurses generally feel competent; however, they often lack confidence in addressing patients' social and spiritual needs. They experienced unease when discussing death and exhibited paternalistic attitudes. Significant differences were found in educational background, nursing experience, personal caregiving experience, and practice setting. Positive correlations exist between attitudes, knowledge, and self-competence, indicating that greater knowledge and competence were associated with better attitudes toward end-of-life care.ConclusionsThis study highlights the need for educational interventions focusing on communication skills, pain management, psychological and spiritual care, and patient-centered care to improve nurses' competence in delivering high-quality palliative care in hospital settings.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251341981"},"PeriodicalIF":1.3,"publicationDate":"2025-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144259344","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":"Pioneering Palliative Care in Pemphigus Vulgaris: A Landmark Case Report from Myanmar.","authors":"Shoon Mya Aye, Wah Wah Myint Zu","doi":"10.1177/08258597251348106","DOIUrl":"https://doi.org/10.1177/08258597251348106","url":null,"abstract":"<p><p>Pemphigus vulgaris (PV) is a chronic autoimmune disease causing painful oral erosions and fragile skin blisters, severely impacting quality of life. This case report presents a 69-year-old female patient in Myanmar with PV complicated by diabetes, hypertension, and thromboembolic conditions. Her extensive skin involvement, severe pain, and recurrent infections emphasized the need for a multidisciplinary approach to management. Palliative care interventions focused on holistic, patient-centered strategies, including effective pain relief with pre-procedural analgesia, meticulous wound care, and strict infection control. Psychological support significantly improved her mental well-being and daily functioning. The case highlights the urgent need for enhanced patient education, continuous follow-up, and structured psychosocial support to optimize treatment outcomes. By implementing these measures, healthcare providers can ensure a more comprehensive approach, improving long-term care and patient satisfaction for individuals living with PV.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251348106"},"PeriodicalIF":1.3,"publicationDate":"2025-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144259345","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":"Impaired Decision-Making Capacity in a Patient With Oral Squamous Cell Carcinoma: Weighing the Benefits and Harms of Treatment Against Objection.","authors":"Charley Jang, Olivia M Seecof, Annette Georgia","doi":"10.1177/08258597251339870","DOIUrl":"https://doi.org/10.1177/08258597251339870","url":null,"abstract":"<p><p>Impairment of medical decision-making capacity is common in acutely ill patients especially those with solid malignancies. Many of these patients lack advance directives and healthcare proxies leaving clinicians with unclear guidance on subsequent treatment decisions and few existing mechanisms to address this issue. We present a case of a 55-year-old man with recurrent oral squamous cell carcinoma who lacked decision-making capacity due to cognitive impairment. He did not have an advance directive or documented healthcare proxy. He declined curative-intent cancer-directed therapy. The dilemma of treatment over objection was carefully explored and the patient ultimately underwent palliative radiation therapy. We advocate for a multidisciplinary framework in which all potential interventions both curative and palliative including treatment over objection are thoughtfully and carefully explored. We illustrate the need for improved guidance and approaches to ensure that these patients who lack decision-making capacity have access to potentially life-saving and therapeutic interventions.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251339870"},"PeriodicalIF":1.3,"publicationDate":"2025-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144210184","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":"Place of Death for People with Schizophrenia and Bipolar Disorder in New Zealand: A National Retrospective Cohort Study.","authors":"Ruth Cunningham, Gawen Carr, Susanna Every-Palmer, Debbie Peterson, Tracy Haitana, Helen Butler, Anthony J O'Brien, Salina Iupati","doi":"10.1177/08258597251339868","DOIUrl":"https://doi.org/10.1177/08258597251339868","url":null,"abstract":"<p><strong>Objectives: </strong>Inequities in access to physical health care for those with mental health conditions and substance use disorders are well recognised, and evidence of unequal access to palliative care is emerging. This study uses complete national data to examine the place of death for those with specific mental health conditions in Aotearoa New Zealand. <b>Methods:</b> Mortality data between 2013 and 2018 was linked to secondary mental health service usage. Place and cause of death were compared between those with diagnoses of bipolar affective disorder or schizophrenia and those without, stratified by ethnicity. <b>Results:</b> A cohort of 498,293 individuals was identified. People diagnosed with bipolar disorder and schizophrenia had different patterns of cause and place of death from other New Zealanders. This group was less likely to die in hospices, even after adjustment for differences in cause of death and age (adjusted OR 0.59, CI 0.52-0.68). Patterns of place of death differed by ethnicity. <b>Conclusions:</b> Inequities in healthcare provision for those diagnosed with psychotic disorders continue at the end of life, with reduced access to hospice facilities. Further research is needed to understand the quality of healthcare provision and wishes of those with mental health conditions in end-of-life care.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251339868"},"PeriodicalIF":1.3,"publicationDate":"2025-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144051537","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":"Prevalence and Symptomatic Benefit of Antibiotic Use in End-of-Life Patients in Saudi Arabia: An Observational Cohort Study.","authors":"Seham Radhi, Mohammed A Alamri, Abdurrahman A Ksibati, Nadia A Shahda, Abdullaha I Alsuhail, Mustafa Zakkar, Ibrahim Antoun","doi":"10.1177/08258597251336821","DOIUrl":"https://doi.org/10.1177/08258597251336821","url":null,"abstract":"<p><strong>Objectives: </strong>Antibiotic use in patients with advanced cancer at the end of life (EoL) is common but controversial, with limited evidence on its efficacy in improving symptoms. This study aimed to evaluate the prevalence of antibiotic use during the final 30 days of life in patients with advanced cancer and its impact on symptom improvement within a palliative care setting in Saudi Arabia. <b>Methods:</b> A retrospective cohort study was conducted in the palliative care department of King Fahad Medical City, Riyadh, Saudi Arabia. The study included all advanced cancer patients who received inpatient palliative care and died between January 2022 and March 2023. Medical records data were analyzed to assess infection-related symptoms, antibiotic use, and symptom improvement 3 days (D3) post-diagnosis. <b>Results:</b> A total of 220 patients were included, with a mean age of 61 ± 17 years and a mean palliative performance scale of 37%. Antibiotics were prescribed to 89% of patients, primarily empirically (82%). Piperacillin/tazobactam (53%) and meropenem (17%) were the most commonly used antibiotics. Symptom improvement at D3 was observed in 54% of symptomatic patients (n = 95). Improvements were significant for fever (42% to 15%, <i>P</i> < .001), pain (58% to 37%, <i>P</i> < .001), cough (16% to 7%, <i>P</i> = .004), and shortness of breath (32% to 20%, <i>P</i> = .003). The logistic regression model analysis identified no significant predictors of symptom improvement. <b>Conclusion:</b> Antibiotics are widely used EoL care for advanced cancer patients, but their impact on symptom improvement is modest. The findings underscore the need for judicious antibiotic use, guided by individualized care goals and interdisciplinary collaboration, to optimize symptom management while minimizing unnecessary interventions.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251336821"},"PeriodicalIF":1.3,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144042594","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":"Deathbed Etiquette - The Guide: A Qualitative Study Exploring the Views of Practitioners on its Introduction into End-of-Life Care Settings.","authors":"Mette Kragh-Furbo, Maddy French, Lesley Dunleavy, Sophie Hancock, Karen Sanders, Margaret Doherty, Amy Gadoud","doi":"10.1177/08258597231158325","DOIUrl":"10.1177/08258597231158325","url":null,"abstract":"<p><p><b>Objectives:</b> It is common for relatives to feel uncertain about what to expect at the bedside of a dying loved one. The Centre for the Art of Dying Well together with clinical, academic and communications experts created a 'Deathbed Etiquette' guide offering information and reassurance to relatives. This study explores the views of practitioners with experience in end-of-life care on the guide and how it might be used. <b>Methods:</b> Three online focus groups and nine individual interviews were conducted with a purposive sample of 21 participants involved in end-of-life care. Participants were recruited through hospices and social media. Data were analysed using thematic analysis. <b>Results:</b> Discussions highlighted the importance of effective communication that normalises experiences of being by the bedside of a dying loved one. Tensions around the use of the words 'death' and 'dying' were identified. Most participants also expressed reservations about the title, with the word 'deathbed' found to be old-fashioned and the word 'etiquette' not capturing the varied experiences of being by the bedside. Overall, however, participants agreed that the guide is useful for 'mythbusting' death and dying. <b>Conclusion:</b> There is a need for communication resources that can support practitioners in having honest and compassionate conversations with relatives in end-of-life care. The 'Deathbed Etiquette' guide is a promising resource to support relatives and healthcare practitioners by providing them with suitable information and helpful phrases. More research is needed on how to implement the guide in healthcare settings.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"162-167"},"PeriodicalIF":1.3,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11967078/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9474007","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":"Trends, Predictors, and Potential Disparities of Palliative Care Utilization Among Older Adults With Hip Fractures: A Retrospective Analysis of the National Inpatient Sample, 2016-2020.","authors":"Yuji Yamada, Takaaki Kobayashi, Patrick Ten Eyck, Renee Ren, Shigeki Fujitani, Fred Ko","doi":"10.1177/08258597241290982","DOIUrl":"10.1177/08258597241290982","url":null,"abstract":"<p><p><b>Objectives:</b> To assess the trends in palliative care consultation utilization and identify associated factors among older adults hospitalized with hip fractures in the United States between 2016 and 2020. <b>Methods:</b> We conducted a retrospective cohort study using data from the National Inpatient Sample from 2016 to 2020. The study included patients aged 65 and older admitted to hospital with a primary diagnosis of hip fracture. We identified palliative care consultations using ICD-10 code Z51.5. Multivariate logistic regression analyses were performed to identify predictors of palliative care utilization, adjusting for demographics, clinical variables, and hospital characteristics. <b>Results:</b> A total of 293,749 admissions for hip fractures were identified, of which 9546 (3.2%) had palliative care consultations. A consistent upward trend was seen in the proportion of patients receiving palliative care consultations across all fracture types. Patients of color (Black: odds ratio [OR] = 0.73, 95% confidence interval [CI]: 0.65-0.83; Hispanic: OR = 0.67, 95% CI: 0.60-0.75 compared to White), those in lower-income quartiles (lowest: OR = 0.81, 95% CI: 0.76-0.87 compared to highest), smaller hospital size (OR = 0.84, 95% CI: 0.79-0.89 compared to large), and rural hospital (OR = 0.63, 95% Cl: 0.59-0.68, compared to urban teaching) were associated with fewer palliative care consultations. <b>Conclusion:</b> The number of palliative care consultations during hip fracture hospital admission was low, although the proportion increased over time. Significant disparities were observed and further research should explore barriers to palliative care access and develop strategies to enhance its delivery across diverse healthcare settings.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"120-128"},"PeriodicalIF":1.3,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142480197","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":"Experiences of Non-Family Paid Helpers Providing Palliative Care to Stroke Patients: The Toll of Professional Informal Caregiving in a Job Lacking Recognition.","authors":"Jing Jing Su, Hammoda Abu-Odah, Jonathan Bayuo, Rose Sin Yi Lin, Xiaoling Luo, Alex Molassiotis","doi":"10.1177/08258597231210138","DOIUrl":"10.1177/08258597231210138","url":null,"abstract":"<p><p><b>Background:</b> Employing non-family paid helpers has become a prevalent practice across North America, Europe, and Asia, which families adopt to alleviate the stroke care burden, allowing family to take a break from their obligations and perform other social activities. However, paid helpers' experiences of providing palliative care to stroke patients are under-explored. This study aimed to explore the caregiving experiences of non-family paid helpers providing palliative care to stroke patients. <b>Method:</b> A qualitative descriptive study was undertaken using purposive sampling and semi-structured individual in-depth interviews. Thematic analysis was used for data analysis. <b>Results:</b> Seventeen participants (mean age: 51.23 years) were included, predominantly being female (88%), and their caregiving experiences with patients ranged from four to 26 years. Participants shared that monetary compensation offset the exhaustion, familial and health sacrifices of palliative caregiving. They emphasized emotional self-management through accepting and coping or avoiding and distancing, and appreciated rewarding appraisals from stroke patients and family members. They also expressed a lack of recognition from the public, being invisible to the healthcare system/professionals, and insecurity in employment rights. <b>Conclusions:</b> Findings support the need for governmental initiatives to subsidize families in employing helpers to provide palliative care. Helpers perceived monetary compensation and a reciprocal caregiving relationship as the primary motives for providing care. Public recognition of this role as a helper in caregiving, contractual employment rights, and being recognized by the healthcare system and healthcare professionals are considerations in promoting quality care and alleviating a health care burden. The findings may contribute to further understanding of the experiences of non-family paid helpers in a job lacking recognition when delivering palliative care in a hospital for stroke patients. Evidence-based interventions that enhance reciprocity and recognition should be considered as part of the global initiatives to support paid helpers in palliative care.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"103-112"},"PeriodicalIF":1.3,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71415172","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":"(No) Oral Health in Palliative Care Patients: Predisposing Factors and Treatment.","authors":"Maria de Lurdes da Costa Martins, Cláudia Gaspar Dias de Barros","doi":"10.1177/08258597231212305","DOIUrl":"10.1177/08258597231212305","url":null,"abstract":"<p><p>ObjectiveTo describe mouth disorders in patients undergoing palliative care (PC); to identify predisposing factors for oral disorders and pharmacological and nonpharmacological strategies.MethodsObservational, exploratory, correlational, and descriptive study about mouth disorders of patients admitted to a hospital specializing in PC in Portugal, between November 6, 2019, and July 31, 2020. The data collection instrument was a questionnaire and the consultation of the patient's clinical file. It was obtained the previous authorization of the ethics committee and the patient's informed consent. Data were analyzed using the SPSS® software (V.26).ResultsThe sample was 46, 56.52% were over 71 years old, and the male sex ratio of 63.04%. Most of the patients had an advanced oncological disease, were polymedicated, had missing teeth, and no regular hygiene habits. Xerostomia and oral candidiasis were the most identified problems. Patients with oncological diseases have more probability to suffer from mouth disorders (<i>P</i> = .047), compared to noncancer patients. Patients with frequent oral hygiene have fewer mouth disorders (rp = -0.304; <i>P</i> = .040). There is a considerable improvement in the tongue coating with an increase in oral hygiene (<i>P</i> = .005). Mouth care plays is important in patient comfort (n = 45; 97.83%) and nonpharmacological strategies are effective for the relief of xerostomia (n = 35; 94.59%).ConclusionsNonpharmacological strategies are effective in the treatment of xerostomia and tongue coating. More information to determine the effectiveness of the strategies in the treatment of mouth disorders is necessary.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"113-119"},"PeriodicalIF":1.3,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138048397","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}