Lucy Bleazard, Jonathan Palmer, David Wenzel, Thomas Jeffery, Christina Faull
{"title":"Assisted ventilation withdrawal in motor neuron disease: updated results.","authors":"Lucy Bleazard, Jonathan Palmer, David Wenzel, Thomas Jeffery, Christina Faull","doi":"10.1136/spcare-2025-005389","DOIUrl":"10.1136/spcare-2025-005389","url":null,"abstract":"<p><strong>Introduction: </strong>Patients with ventilator-dependent motor neuron disease (MND) may request withdrawal of their assisted ventilation. Facilitating this process as a healthcare professional (HCP) can be emotionally and practically challenging. The Association for Palliative Medicine (APM) issued guidance to support HCPs and invited anonymised accounts of the withdrawal process to provide an update on the guidance.</p><p><strong>Methods: </strong>HCPs submitted anonymised accounts via email. Quantitative data was analysed descriptively in Excel. Free-text comments were analysed thematically using an inductive, iterative approach.</p><p><strong>Results: </strong>68 HCPs submitted 95 accounts of ventilation withdrawal between 2015 and 2024. Most patients received medications pre-withdrawal (94%), primarily a combination of an opioid and midazolam, mostly subcutaneously. Younger patients tended to need higher doses to achieve adequate symptom management prior to withdrawal. Practices of weaning the ventilator varied significantly between respondents. The median time to death following withdrawal of ventilation was 30 min, with three-quarters of patients dying within 2 hours.</p><p><strong>Conclusion: </strong>This is the largest data set to date regarding the withdrawal of assisted ventilation in MND. This updated analysis reaffirms that a personalised, titrated approach remains appropriate and effective. The revised APM Guidance 2025 incorporates new sections on recommendations for managing the ventilator.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"396-399"},"PeriodicalIF":2.0,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12128755/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143699506","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}
Zita Kruize, Isa van Campen, Lisa Vermunt, Olaf Geerse, Josephine Stoffels, Charlotte Teunissen, Lia van Zuylen
{"title":"Delirium pathophysiology in cancer: neurofilament light chain biomarker - narrative review.","authors":"Zita Kruize, Isa van Campen, Lisa Vermunt, Olaf Geerse, Josephine Stoffels, Charlotte Teunissen, Lia van Zuylen","doi":"10.1136/spcare-2024-004781","DOIUrl":"10.1136/spcare-2024-004781","url":null,"abstract":"<p><p><b>Background</b> Delirium is a debilitating disorder with high prevalence near the end of life, impacting quality of life of patients and their relatives. Timely recognition of delirium can lead to prevention and/or better treatment of delirium. According to current hypotheses delirium is thought to result from aberrant inflammation and neurotransmission, with a possible role for neuronal damage. Neurofilament light chain (NfL) is a protein biomarker in body fluids that is unique to neurons, with elevated levels when neurons are damaged, making NfL a viable biomarker for early detection of delirium. This narrative review summarises current research regarding the pathophysiology of delirium and the potential of NfL as a susceptibility biomarker for delirium and places this in the context of care for patients with advanced cancer. <b>Results</b> Six studies were conducted exclusively on NfL in patients with delirium. Three of these studies demonstrated that high plasma NfL levels preoperatively predict delirium in older adult patients postoperatively. Two studies demonstrated that high levels of NfL in intensive care unit (ICU) patients are correlated with delirium duration and severity. One study found that incident delirium in older adult patients was associated with increased median NfL levels during hospitalisation. <b>Conclusions</b> Targeted studies are required to understand if NfL is a susceptibility biomarker for delirium in patients with advanced cancer. In this palliative care context, better accessible matrices, such as saliva or urine, would be helpful for repetitive testing. Improvement of biological measures for delirium can lead to improved early recognition and lay the groundwork for novel therapeutic strategies.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"319-325"},"PeriodicalIF":2.0,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12128785/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139641598","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":"Do not attempt cardiopulmonary resuscitation decision-making process: scoping review.","authors":"Owen Doody, Hope Davidson, John Lombard","doi":"10.1136/spcare-2023-004573","DOIUrl":"10.1136/spcare-2023-004573","url":null,"abstract":"<p><strong>Objectives: </strong>To conduct a scoping review to explore the evidence of the process of do not attempt cardiopulmonary resuscitation (DNACPR) decision-making.</p><p><strong>Methods: </strong>We conducted a systematic search and review of articles from 1 January 2013 to 6 April 2023 within eight databases. Through multi-disciplinary discussions and content analytical techniques, data were mapped onto a conceptual framework to report the data.</p><p><strong>Results: </strong>Search results (n=66 207) were screened by paired reviewers and 58 papers were included in the review. Data were mapped onto concepts/conceptual framework to identify timing of decision-making, evidence of involvement, evidence of discussion, evidence of decision documented, communication and adherence to decision and recommendations from the literature.</p><p><strong>Conclusion: </strong>The findings provide insights into the barriers and facilitators to DNACPR decision-making, processes and implementation. Barriers arising in DNACPR decision-making related to timing, patient/family input, poor communication, conflicts and ethical uncertainty. Facilitators included ongoing conversation, time to discuss, documentation, flexibility in recording, good communication and a DNACPR policy. Challenges will persist unless substantial changes are made to support and promote examples of good practice. Overall, the review underlined the complexity of DNACPR decision-making and how it is a process shaped by multiple factors including law and policy, resource investment, healthcare professionals, those close to the patient and of central importance, the patient.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"400-410"},"PeriodicalIF":2.0,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12128779/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140189434","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":"Terminally Ill Adults Bill: an opportunity to improve continuing healthcare (CHC) in England.","authors":"Harrison Charles Duell, Mary Shifona Kumarasingam","doi":"10.1136/spcare-2025-005448","DOIUrl":"https://doi.org/10.1136/spcare-2025-005448","url":null,"abstract":"","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143963390","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 virtual wards: a cross-sectional UK survey.","authors":"Hannah Lucy May-Miller, Debra Swann","doi":"10.1136/spcare-2025-005482","DOIUrl":"https://doi.org/10.1136/spcare-2025-005482","url":null,"abstract":"<p><strong>Objective: </strong>Various providers have piloted palliative virtual wards in the past 4 years. This survey provides the first aggregated data from across the UK.</p><p><strong>Method: </strong>A cross-sectional online survey distributed to UK palliative care providers using a multilevel, snowballing methodology.</p><p><strong>Results: </strong>86 responses were received, with responses from 22 palliative virtual wards. All services who responded support patients with unstable palliative symptoms who would otherwise need hospital or hospice admission (100%). Many provide step-down support from hospital (72%) or the emergency department (69%).Services rely on daily specialist nurse and consultant input. A few have regular input from therapists (23%) and pharmacists (17%), which is reported as valuable. Most recruited additional staff (65%). Providers use telephone contact (100%) and face-to-face contact (93%). Fewer use video consultations (69%) and remote-monitoring technology (15%).75% of services rely on charitable funding and two virtual wards have closed due to lack of funds.Palliative virtual ward professionals report that they reduce hospital admissions, facilitate patient choice and provide support for patients' loved ones.</p><p><strong>Conclusions: </strong>Palliative virtual wards are increasing in number: 25% of survey respondents are considering launching one. This survey details varied models of care and reports positive outcomes for patients, carers and staff. These services resemble frailty virtual wards with an emphasis on face-to-face rather than technology-enabled care. Integrated services within a wider virtual ward show promise but are currently in the minority.Further research is needed into the comparative benefits of a palliative virtual ward model over standard care.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143966565","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":"Time, distress and the social good of palliative medicine research participation.","authors":"Katharine Weetman, Cara Bailey, John I MacArtney","doi":"10.1136/spcare-2025-005471","DOIUrl":"https://doi.org/10.1136/spcare-2025-005471","url":null,"abstract":"<p><p>Research involving patients is often subject to demanding ethical review processes to protect research participants and prevent harm or fraud. While having a robust ethical approval process is necessary, in practice, within palliative care contexts, the ethical issues and challenges raised (eg, gatekeeping) can often be detrimental to the research and, ultimately, people in need of high-quality care. We draw on evidence from our own research and others to challenge one-time-suits-all approaches to 'protect the vulnerable' in research, which, we argue, <i>makes</i> people in end-of-life contexts more vulnerable as their voices are at risk of being excluded.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143977051","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}
Patricia Biondo, Shireen Kassam, Crystal Beaumont, Philip Akude, Patricia Silbernagel, Madalene Earp, Beverley M Essue, Christopher J Longo, Sharon M Watanabe, Jessica Simon, Aynharan Sinnarajah
{"title":"Financial burden in advanced cancer: colorectal cancer data analysis.","authors":"Patricia Biondo, Shireen Kassam, Crystal Beaumont, Philip Akude, Patricia Silbernagel, Madalene Earp, Beverley M Essue, Christopher J Longo, Sharon M Watanabe, Jessica Simon, Aynharan Sinnarajah","doi":"10.1136/spcare-2024-005151","DOIUrl":"https://doi.org/10.1136/spcare-2024-005151","url":null,"abstract":"<p><strong>Objectives: </strong>To characterise patient-reported financial burden of living with advanced colorectal cancer in Alberta, Canada, as part of a larger prospective cohort study characterising the experiences of people living with advanced colorectal cancer.</p><p><strong>Methods: </strong>Patients were recruited from Alberta's tertiary cancer centres between January 2018 and July 2020. Enrolled participants were invited to complete the Patient Self-Administered Financial Effects (P-SAFE) questionnaire at 1 month post-enrolment and every 6 months thereafter, until death or end of study (December 2020). The questionnaire captured consumption expenditure, out-of-pocket costs, including travel and parking costs, dissaving strategies and productivity impacts of patients and caregivers over the past 28 days.</p><p><strong>Results: </strong>Of 87 eligible patients, 56 completed at least one P-SAFE survey. They reported an average of $C401 in out-of-pocket costs (eg, medications, vitamins/supplements, devices) over the past 28 days (median $C84, range $C0-$C4475), plus an average of $C249 per 28 days for travel and parking (median $C80, range $C0-$C2680). Patients reported an average of two trips per month to their cancer centre, travelling anywhere from 6 to 500 km one way. 88% of employed patients and 88% of employed caregivers reported impacts on employment; 34% of patients made significant asset decisions (eg, withdrew savings, downsized home). 30% of patients reported high perceived financial burden (ie, 'somewhat', 'large' or 'worst possible' financial difficulty) in the past month.</p><p><strong>Conclusions: </strong>This cross-sectional descriptive analysis suggests that the financial burden of advanced colorectal cancer is high, as evidenced by high out-of-pocket costs, impacts on employment and self-reported financial difficulty.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143977046","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":"Bioethics and hospital palliative care: a systematic review.","authors":"Klinger Ricardo Dantas Pinto, Laila Zelkcovicz Ertler, Francisca Rego, Rui Nunes","doi":"10.1136/spcare-2024-005021","DOIUrl":"https://doi.org/10.1136/spcare-2024-005021","url":null,"abstract":"<p><strong>Background: </strong>The finitude of life presents various bioethical challenges, especially when palliative care is the therapeutic option. The hospital environment for palliative care has ethical peculiarities that need to be better understood, since the literature presents research that is commonly carried out at home.</p><p><strong>Objectives: </strong>This study aims to investigate the fundamental bioethical perspectives for hospital palliative care and to compare these perspectives with those existing in home care.</p><p><strong>Methods: </strong>A systematic review of the literature was conducted between March and April 2024. This included observational studies that addressed bioethical perspectives in hospital palliative care. No restrictions were placed on the date of publication or language of the article. This review excluded editorials, intervention studies and articles developed in a home environment.</p><p><strong>Results: </strong>Seven databases and other sources were searched, and 3976 articles were found. Eight studies were selected for qualitative synthesis. A paired review was conducted at all stages. The results indicated that respect for cultural beliefs and values, effective communication and empathy were the most significant bioethical perspectives for hospital palliative care, among the nine other ethical aspects present in the studies. The comparison with bioethical perspectives in the home environment highlighted differences such as privacy and autonomy in the patient's home.</p><p><strong>Conclusions: </strong>The conclusion allows us to understand that aspects of caring for the person and understanding the illness should be the focus of bioethics in hospital palliative care.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-04-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143979096","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":"Phenobarbital for inpatient palliative sedation-a clinical audit.","authors":"Brendan Tan, Grace Freeman-Spratt, Hossein Kasiri","doi":"10.1136/spcare-2024-005361","DOIUrl":"https://doi.org/10.1136/spcare-2024-005361","url":null,"abstract":"<p><strong>Objectives: </strong>Identify the indication, route of administration and dose for phenobarbital continuous subcutaneous infusion (CSCI) in palliative sedation therapy (PST).Assess the dosing and continuation of midazolam and levomepromazine in conjunction with phenobarbital.</p><p><strong>Methods: </strong>This clinical audit examined inpatient phenobarbital CSCI use for PST from January 2021 to April 2024. Data were retrospectively extracted from electronic medical records (n=23).</p><p><strong>Results: </strong>The most common indication for phenobarbital CSCI was agitation, followed by sedation for non-invasive ventilation withdrawal. Phenobarbital was administered subcutaneously in all cases without adverse systemic or site reactions.The most common loading dose was 200 mg (50-200 mg), and the most common initiating CSCI dose was 800 mg/24 hours (400-1200 mg/24 hours). The maximum dose was 1800 mg/24 hours. The average time to death following start of phenobarbital was 52 hours (4-123 hours). Most patients (n=22) were described as comfortable at death.Before starting phenobarbital CSCI, all patients were on midazolam CSCI (mean dose 50 mg), which was continued in 14 patients. Seventeen patients received levomepromazine CSCI (mean dose 137 mg), which was continued in 12 patients.</p><p><strong>Conclusion: </strong>Phenobarbital appears to be an effective medication for PST. However, inconsistencies in dosing, concurrent sedative medication use and standardised protocols highlight areas for improvement in clinical guidelines.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-04-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143964218","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}