BMJ Supportive & Palliative Care最新文献

Parents' experiences of paediatric end-of-life care in the UK: a multisite qualitative study. 英国儿童临终关怀的父母经历：一项多地点定性研究。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-23 DOI: 10.1136/spcare-2025-005427

George Peat, Emma Victoria McLorie, Laura Barrett, Helen Weatherly, Sebastian Hinde, Gabriella Lake Walker, Jane Noyes, Sam Oddie, Chakrapani Vasudevan, Richard Feltbower, Bob Phillips, Catherine Elizabeth Hewitt, Richard Hain, Gayathri Subramanian, Andrew Haynes, Lorna Fraser, Fliss Murtagh, Julia Hackett

{"title":"Parents' experiences of paediatric end-of-life care in the UK: a multisite qualitative study.","authors":"George Peat, Emma Victoria McLorie, Laura Barrett, Helen Weatherly, Sebastian Hinde, Gabriella Lake Walker, Jane Noyes, Sam Oddie, Chakrapani Vasudevan, Richard Feltbower, Bob Phillips, Catherine Elizabeth Hewitt, Richard Hain, Gayathri Subramanian, Andrew Haynes, Lorna Fraser, Fliss Murtagh, Julia Hackett","doi":"10.1136/spcare-2025-005427","DOIUrl":"https://doi.org/10.1136/spcare-2025-005427","url":null,"abstract":"Objectives: Despite the marked improvement in child mortality over the last two decades, more than 7 million infants, children and young people still die worldwide every year. In the UK, four National Health Service settings care for more than 60% of the children who die each year: neonatal and paediatric intensive care units and children and teenager cancer principal treatment centres. There is limited evidence on how end-of-life care is experienced by parents and how this differs across settings. We aimed to explore parents' experiences of receiving end-of-life care for their child in these settings.Methods: A multisite qualitative study involving in-depth interviews with bereaved parents, analysed using reflexive thematic analysis. Recruitment via 14 National Health Service sites, three children's hospices and two third sector organisations across the UK.Results: 55 parents participated (37 mothers, 18 fathers), representing 44 children and young people (median age 7 years, range 0-23 years). 42 interviews were conducted. Experiences of care were highly variable. Parents' perceptions of high quality end-of-life care were highlighted within three themes: (1) building the foundations for high quality end-of-life care; (2) working together towards best decisions and care and (3) continuing care after death and into bereavement.Conclusions: Bereaved parents' experiences of care at the end of life are too inconsistent. Feeling heard is crucial; without it, there is no foundation on which adequate end-of-life care can be built. Care must be tailored to the circumstances of each family and should continue after a child's death and into bereavement.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144697563","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}

引用次数: 0

Navigating culture and religion in palliative care. 缓和医疗中的文化和宗教导航。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-18 DOI: 10.1136/spcare-2025-005613

Joe El Khoury

{"title":"Navigating culture and religion in palliative care.","authors":"Joe El Khoury","doi":"10.1136/spcare-2025-005613","DOIUrl":"https://doi.org/10.1136/spcare-2025-005613","url":null,"abstract":"Background: In our increasingly interconnected world, the intersection of culture and religion plays a crucial role in palliative care. In this essay, I explore how these elements influence patients' and families' perceptions of illness, death and the care they receive.Approach and key insights: Drawing from personal experiences and diverse cultural contexts, the article highlights the challenges and ethical dilemmas faced by healthcare providers. It emphasises the importance of delivering care that is not only medically sound but also deeply respectful of the diverse backgrounds of patients and their families. The essay delves into the evolving nature of cultural attitudes towards healthcare, highlighting significant shifts in practices across different regions. For instance, it examines how truth-telling in medicine has transformed over the decades in countries like the USA, Italy and Lebanon. By examining common attitudes towards healthcare, truth-telling and pain management, it seeks to uncover universal fears and taboos that transcend cultural boundaries. It advocates for a compassionate approach that balances medical expertise with cultural sensitivity, ultimately fostering open communication and trust between healthcare providers and patients. Through case studies and practical strategies, it discusses the concepts of cultural relativism, ethical relativism and ethical universalism and offers insights into fostering open communication, building trust and respecting religious rituals in palliative care.Conclusion: This article underscores the need for cultural competence training and practical strategies to navigate the complexities of palliative care, ensuring that every patient receives care that honours their cultural and religious beliefs.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144667123","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}

引用次数: 0

Palliative sedation in Sweden: specialised palliative care nationwide survey. 瑞典姑息性镇静：专科姑息治疗全国调查。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-18 DOI: 10.1136/spcare-2025-005618

Linda Björkhem-Bergman, Per Fürst, Staffan Lundstrom

{"title":"Palliative sedation in Sweden: specialised palliative care nationwide survey.","authors":"Linda Björkhem-Bergman, Per Fürst, Staffan Lundstrom","doi":"10.1136/spcare-2025-005618","DOIUrl":"https://doi.org/10.1136/spcare-2025-005618","url":null,"abstract":"Objectives: The aim of this study was to map the use of palliative sedation (PS) in specialised palliative care (SPC) in Sweden and compare the results with a survey made 20 years ago.Methods: A survey to all SPC units in Sweden was performed during the first quarter of 2025 as add-on questions to the Swedish Register of Palliative Care. The definition of PS was continuous sedation in the final stage of life with the aim of lowering the patient's consciousness due to intractable symptoms. Questions included whether the patient had received PS (yes/no), choice of drug and how long the sedation lasted.Results: Of 2701 deaths in SPC during the study period, 2069 cases had answered the survey (response rate 77%). Of these, 208 had received PS (10%). The majority of patients had received midazolam as the main sedative, n=185 (89%). Other drugs used as main sedatives were levomepromazine, n=14 (7%); propofol, n=5 (2%); and haloperidol, n=2 (1%). The median duration of sedation was 2 days and 4% had sedation longer than 7 days.Conclusions: PS is more common in Sweden today than 20 years ago, 10% compared to 1%. The vast majority received midazolam as a sedative.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144667124","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}

引用次数: 0

End-of-life care for inpatients with schizophrenia: national claims database retrospective cohort study. 住院精神分裂症患者的临终关怀：国家索赔数据库回顾性队列研究。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-15 DOI: 10.1136/spcare-2025-005474

Fumiya Ito, Shintaro Togashi, Maho Aoyama, Masaki Fujiwara, Norika Mitsunaga, Natsuko Kobayashi, Mitsunori Miyashita

{"title":"End-of-life care for inpatients with schizophrenia: national claims database retrospective cohort study.","authors":"Fumiya Ito, Shintaro Togashi, Maho Aoyama, Masaki Fujiwara, Norika Mitsunaga, Natsuko Kobayashi, Mitsunori Miyashita","doi":"10.1136/spcare-2025-005474","DOIUrl":"https://doi.org/10.1136/spcare-2025-005474","url":null,"abstract":"Aim: This study aimed to clarify the end-of-life care among inpatients with schizophrenia, using a national claims database.Methods: We conducted a retrospective cohort study of inpatients aged 20 years and older who died between 2012 and 2015, using a sampling dataset of the National Database (NDB) of Japan. The outcome was the proportion of patients who received end-of-life care in the last 14 days of life.Results: We analysed data from 49 932 end-of-life patients, 530 of whom had schizophrenia. Regarding the place of death, patients with schizophrenia died in psychiatric units (44.8% (95% CI 41.7 to 48.9)). A lower proportion of patients with schizophrenia received cardiopulmonary resuscitation (CPR) (16.6% vs 20.5%, p<0.001) or mechanical ventilation (13.4% vs 20.9%, p<0.001), but they were more likely to receive opioids (20.8% vs 19.0%, p=0.30) compared with those without schizophrenia. Multivariate logistic regression analysis showed that schizophrenia was negatively associated with receiving CPR (adj OR: 0.50 (95% CI 0.38 to 0.65), p<0.001) and mechanical ventilation (adj OR: 0.48 (95% CI 0.36 to 0.63), p<0.001), but positively associated with receiving opioids (adj OR: 1.57 (95% CI 1.18 to 2.09), p=0.002).Conclusion: This study revealed the place of death and the provision of high-intensity end-of-life care for inpatients with schizophrenia, utilising the NDB of Japan.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144641809","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}

引用次数: 0

Future care planning. 未来护理计划。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-11 DOI: 10.1136/spcare-2025-005616

Mala Mann, Caitlin Cahill, Stephanie Sivell, Robyn Hackett, Elin Harding, Mark Taubert

引用次数: 0

Healthcare for adults with long-term neurological conditions: European Academy of Neurology Members Survey. 长期神经系统疾病的成人保健：欧洲神经病学学会成员调查。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-10 DOI: 10.1136/spcare-2025-005504

Katarina Rukavina, Alessandra Solari, Marianne de Visser, Ludo Vanopdenbosch, Magdalena Krbot Skoric, Maria Lolich, Lucia Pavlakova, David Oliver, Simone Veronese

{"title":"Healthcare for adults with long-term neurological conditions: European Academy of Neurology Members Survey.","authors":"Katarina Rukavina, Alessandra Solari, Marianne de Visser, Ludo Vanopdenbosch, Magdalena Krbot Skoric, Maria Lolich, Lucia Pavlakova, David Oliver, Simone Veronese","doi":"10.1136/spcare-2025-005504","DOIUrl":"10.1136/spcare-2025-005504","url":null,"abstract":"Background: The number of people living with long-term neurological conditions (PwLTNC) in Europe is on the rise and they experience a variety of complex symptoms, often requiring hospital admissions. This survey explored challenges healthcare professionals are encountering when providing care for PwLTNC.Methods: A web-based survey was developed by the European Academy of Neurology (EAN) Scientific Panel on Palliative Care and disseminated by the EAN Scientific Department through the official mailing list, website and newsletter in the period 3 January 2024 to 27 February 2024. The United Nations' geoscheme for Europe was applied and differences between the North/West vs South/East/Greater European regions analysed.Results: A total of 153 EAN members (50% women, mean age 48 years) were participated. They expressed their dissatisfaction with the availability of long-term healthcare, including palliative care (60%), psychosocial (67%) and spiritual support (60%) offered to PwLTNC, their families and carers, the resources to provide healthcare for PwLTNC in medical emergencies and knowledge of acute medical staff about PwLTNC (45%). Dissatisfaction with the availability of resources needed to provide healthcare for PwLTNC, the psychosocial support offered to PwLTNC and the extent of advance care planning implementation was more frequently reported in South/East/Greater Europe compared with North/West Europe.Conclusion: This survey of the EAN members revealed dissatisfaction with long-term healthcare, including palliative care, offered to PwLTNC, their families and carers and pointed out healthcare disparities between the two European macroregions, with more critical figures in South/East/Greater Europe.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144526365","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}

引用次数: 0

Resistance training in cachectic pancreatic and lung cancer patients: randomised controlled trial. 抗阻训练在恶性胰腺癌和肺癌患者中的应用：随机对照试验。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-08 DOI: 10.1136/spcare-2025-005516

Timo Niels, Lisa Stich, Stefanie Siebert, Sarah Man, Nico DeLazzari, Mitra Tewes, Helen Schörghofer, Dirk Waldschmidt, Freerk T Baumann

{"title":"Resistance training in cachectic pancreatic and lung cancer patients: randomised controlled trial.","authors":"Timo Niels, Lisa Stich, Stefanie Siebert, Sarah Man, Nico DeLazzari, Mitra Tewes, Helen Schörghofer, Dirk Waldschmidt, Freerk T Baumann","doi":"10.1136/spcare-2025-005516","DOIUrl":"https://doi.org/10.1136/spcare-2025-005516","url":null,"abstract":"Objectives: Pancreatic and lung cancer are associated with cancer cachexia (CC), which negatively impacts patients' quality of life, treatment outcomes and prognosis. This study aimed to evaluate the feasibility and effectiveness of a 24-week eccentrically overloaded resistance training (ERT) in patients with CC.Methods: 22 patients with pancreatic or lung cancer and CC were randomised (2:1) to either supervised ERT (n=14) and usual care (UC, n=8). ERT was performed twice weekly for 24 weeks. Feasibility was assessed through recruitment rate, dropouts, adverse events (AEs) and exercise adherence. Secondary outcomes included body composition, physical performance and patient-reported outcomes (PROs) in quality of life, fatigue, anxiety and depression, anorexia-cachexia symptoms and physical activity levels. Assessments were conducted at baseline, 12 weeks (ITT1) and after 24 weeks (ITT2).Results: The recruitment rate was 21.8%. 10 dropouts (45.5%) were recorded (ERT: n=7, UC n=3). Clinical AEs were comparable between the groups. Two AEs occurred during or after an exercise session, but resolved completely. The exercise adherence was 63.7%. After 12 weeks, the ERT group improved significantly in aerobic capacity, functional strength and several PROs, while the UC group improved in PROs depression and physical activity levels. After 24 weeks, body composition worsened in the UC group compared with the ERT group (p=0.026). Intragroup analysis showed improvements in PRO domains in the ERT group and decreases of the phase angle in the UC group.Conclusions: Supervised ERT seems feasible in cachectic cancer patients and may preserve or enhance physical performance, constitution and PROs.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144590423","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}

引用次数: 0

Symptom appraisal and help-seeking for complications of cancer and its treatment: a systematic review and qualitative synthesis. 癌症并发症及其治疗的症状评价与求助：系统综述与定性综合。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-07 DOI: 10.1136/spcare-2025-005477

John Defty, Richard Wagland, Joanne Turnbull, Alison Richardson

{"title":"Symptom appraisal and help-seeking for complications of cancer and its treatment: a systematic review and qualitative synthesis.","authors":"John Defty, Richard Wagland, Joanne Turnbull, Alison Richardson","doi":"10.1136/spcare-2025-005477","DOIUrl":"https://doi.org/10.1136/spcare-2025-005477","url":null,"abstract":"Background: Complications of cancer and its treatment can be life-threatening, disrupt cancer treatment and negatively impact health-related quality of life. While we understand how people appraise symptoms prior to a cancer diagnosis, little is known about how people decide to seek help for complications during cancer treatment.Aim: Characterise how patients and informal caregivers appraise symptoms suggestive of, and decide whether to seek help from urgent and emergency care (or not) for, complications of cancer and its treatment.Methods: Systematic review and qualitative synthesis. Six electronic databases (ASSIA, CINAHL, Embase, MEDLINE, PsycInfo and Web of Science) were searched for papers using qualitative methods published since 2000 (last search performed on 11 October 2024). Supplementary and cluster searches were performed. 7120 records were identified and 22 papers (representing accounts of over 300 people with cancer) were included following the application of the 'appraisal prompts' criteria. Data were synthesised using abductive analysis.Findings: A conceptual map was developed to articulate how five analytic constructs interact and influence the 'patient work' of detecting, interpreting and responding to complications. Findings show that appraising symptoms is iterative and informed by knowledge, skills and perceptions developed prior to treatment through experiences of complications, and following contact with urgent and emergency care.Conclusion: This is the first review to characterise how patients and informal caregivers make decisions about cancer-related complications. Findings show preparation for complications should be treated as a process (rather than an event), and poor experiences of services contribute to delayed help-seeking and risk avoidable harm.Prospero registration number: CRD42023422401.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144583071","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}

引用次数: 0

Paediatric palliative care medical hotline: retrospective database study. 儿科姑息治疗医疗热线：回顾性数据库研究。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-03 DOI: 10.1136/spcare-2025-005400

Tchadine Djaogol, Julien Gautier, Helene Martinez, Geraldine Pouly, Ivana Sondarjee, Didier Frappaz, David Perol, Matthias Schell

{"title":"Paediatric palliative care medical hotline: retrospective database study.","authors":"Tchadine Djaogol, Julien Gautier, Helene Martinez, Geraldine Pouly, Ivana Sondarjee, Didier Frappaz, David Perol, Matthias Schell","doi":"10.1136/spcare-2025-005400","DOIUrl":"https://doi.org/10.1136/spcare-2025-005400","url":null,"abstract":"Background: Clinical emergencies may occur at any time in paediatric palliative care (PPC). Our PPC team offers an on-call 24 hours a day, 7 days a week medical hotline assistance (MHLA). We report the experience of our MHLA during 2021, focusing on phone calls registered out of working hours.Methods: Patients/families followed up by our team and who used the MHLA during 2021 were considered. The aims were to characterise the use of MHLA and to describe the immediate patient's pathway.Results: 232 children/families were followed. Half had disabilities or multiple disabilities. Though each patient benefited from advanced care planning, medical advice requests to/from families (N=864) were registered out of working hours in 160 (19%) cases. They concerned 31 different patients. Incoming calls were made by parents (n=130: 81%), or caregivers (n=19: 12%), while our team called a hospital team (n=11: 7%) to either announce and discuss hospitalisation (n=9) or discuss medical plan while the child stayed at home (n=2). Most calls dealt with a combination of symptom management (n=150), coordination of care (n=9), psychological support (n=3) and/or coordination of the home-hospital trajectory (n=11). 76 (47%) were classified as emergencies: 55/76 concerned clinical situations deemed 'biomedical emergencies' (need for therapeutic adaptation), while 21/76 were solved by reassurance. Only 9/76 (12%) were transferred to the hospital unit.Conclusion: Day and night medical advice requests managed by our PPC team out of working hours helped to avoid admission to the emergency unit in 88% of overall emergency calls received.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144559094","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}

引用次数: 0

America First cuts are the deepest: global health aid reductions and African palliative care. “美国优先”的削减幅度最大：全球医疗援助削减和非洲姑息治疗削减。

IF 2 4区医学

BMJ Supportive & Palliative Care Pub Date : 2025-07-03 DOI: 10.1136/spcare-2025-005657

Richard Antony Powell, Lois Chingandu, Dermott McDonald, Diederik Lohman, Frederick Kibbedi, Emmanuel Luyirika, Eve Namisango

引用次数: 0