M Aurora Mendes, Anouk Jl Muijsenberg, Sarah Houben-Wilke, Carmen Hm Houben, Martijn A Spruit, Alda Marques, Daisy J A Janssen
{"title":"End-of-life preferences of people with advanced chronic obstructive pulmonary disease.","authors":"M Aurora Mendes, Anouk Jl Muijsenberg, Sarah Houben-Wilke, Carmen Hm Houben, Martijn A Spruit, Alda Marques, Daisy J A Janssen","doi":"10.1136/spcare-2024-005067","DOIUrl":"https://doi.org/10.1136/spcare-2024-005067","url":null,"abstract":"<p><strong>Objectives: </strong>To identify end-of-life preferences of people with advanced chronic obstructive pulmonary disease (COPD) and to compare characteristics between those who wish to discuss the end-of-life and those who do not.</p><p><strong>Methods: </strong>An analysis of the baseline data of a randomised controlled trial was performed including people with COPD GOLD stages III-IV or former quadrant D with modified Medical Research Council questionnaire grade ≥2, after hospital discharge following an exacerbation. Participants were interviewed using the End-of-Life Preferences Interview.</p><p><strong>Results: </strong>A total of 165 individuals (53% men; 68±9 years old; 55% care dependent) were included. Most participants wished to take part in shared decision-making (78%), to be informed about a short life expectancy (82%), to discuss the end-of-life (82%), to have loved ones around at death (87%) and to choose when to die (70%). They also reported accepting opioids (74%). Preferences for who to provide physical care, the place, consciousness and atmosphere at death as well as life-sustaining treatments were heterogeneous. Participants who wanted to discuss the end-of-life had a significantly higher educational level (p=0.030) and worse health status than participants who did not (p=0.007).</p><p><strong>Conclusions: </strong>End-of-life preferences of people with advanced COPD were heterogeneous, however, most wished to discuss it, especially those with higher educational level and worse health status.</p><p><strong>Trial registration number: </strong>NTR3940.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142280258","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":"Spiritual assessment in palliative care: multicentre study.","authors":"Jheelam Biswas, Wai Wai Mroy, Nashid Islam, Nahid Afsar, Mastura Kashmeeri, Palash Chandra Banik","doi":"10.1136/spcare-2024-004997","DOIUrl":"https://doi.org/10.1136/spcare-2024-004997","url":null,"abstract":"<p><strong>Objectives: </strong>This study aims to provide an in-depth exploration of everyday spiritual concerns of patients with advanced cancer seeking palliative care in Bangladesh, and assess their spiritual well-being (SWB).</p><p><strong>Methods: </strong>This study was conducted among 163 patients with advanced cancer from three tertiary care hospitals in Bangladesh. It was divided into two parts: a quantitative segment that assessed the SWB of the participants using the EORTC QLQ SWB32, and a qualitative segment that explored their spiritual history.</p><p><strong>Result: </strong>Spirituality was commonly interpreted and understood synonymously with religion by all participants, and their sense of life's meaning centred on their families and friends. The lack of support from religious organisations led to feelings of isolation and disconnection from spiritual communities. Highest scores in SWB were observed in Relationships with God and Someone/Something Greater Scales. The lowest score was observed for Existential fulfilment. Patients expressed a desire for their palliative care team to address their spiritual concerns, regardless of their training in this area.</p><p><strong>Conclusion: </strong>Spirituality is a deeply personal aspect of the human experience. Understanding and respecting these beliefs can empower palliative care professionals to deliver culturally sensitive care to their patients, irrespective of their level of training.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142280259","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}
Rebecca H Lehto, Arienne Patano, Mohammed Alanazi, Gary Bente, Andrew Mason, Grace Caldwell, Dawn Goldstein, Gwen Wyatt
{"title":"Evaluation of a nature-based virtual reality intervention to support hospice caregivers: a pilot feasibility study","authors":"Rebecca H Lehto, Arienne Patano, Mohammed Alanazi, Gary Bente, Andrew Mason, Grace Caldwell, Dawn Goldstein, Gwen Wyatt","doi":"10.1136/spcare-2024-005087","DOIUrl":"https://doi.org/10.1136/spcare-2024-005087","url":null,"abstract":"Objectives Hospice family caregivers (CGs) may experience poor emotional health and diminished quality of life (QOL) secondary to stressors that accompany home-based end-of-life caregiving. Innovative flexible strategies are needed to support hospice CGs in their homes. Being outdoors in nature enhances well-being but is often not accessible to home-based CGs. The purpose was to evaluate the feasibility/acceptability, and preliminary emotional health and QOL outcomes of a 5-day nature-based virtual reality (VR) intervention. Methods A pre–post design was used. Hospice CGs engaged in self-selected 10 min nature experiences via VR headset over 5 days. Preintervention surveys included demographics and the PROMIS-29 QOL measure (physical/social function, anxiety/depressive symptoms, fatigue, sleep and pain). Postintervention surveys included acceptability/feasibility surveys, PROMIS-29 and a VR-related symptom checklist. Data analysis included descriptives and paired t-tests. Results 15 CGs (mean 61.13±12.47 years; 12 females) completed the study. Findings demonstrated high acceptability (14.46±1.77; range 0–16); feasibility (13.93±2.43;range 0–16). Adverse VR symptoms were minimal. PROMIS-29 overall scores were significantly improved following the 5-day intervention (pre: 66.33±8.47; post: 61.07±7.83,p=0.01). Paired t-tests showed significant pre–post changes in anxiety (t=2.206, p<0.05) and favourable trends on other QOL dimensions. Conclusions Feasibility/acceptability and QOL data support further testing of VR nature immersive experiences in the home environment with larger more diverse representative samples.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142253568","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":"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":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","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":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Physical activity and prognosis and factors associated with low physical activity in patients with advanced or recurrent lung cancer: a retrospective, observational study.","authors":"Takuya Fukushima, Utae Katsushima, Naoya Ogushi, Kimitaka Hase, Jiro Nakano","doi":"10.1136/spcare-2024-005122","DOIUrl":"https://doi.org/10.1136/spcare-2024-005122","url":null,"abstract":"<p><strong>Objectives: </strong>To investigate the relationship between physical activity and prognosis, and the significant factors associated with physical activity in patients with advanced or recurrent lung cancer.</p><p><strong>Methods: </strong>This retrospective, observational study enrolled 50 outpatients with lung cancer who received chemotherapy. Patients were evaluated for physical function, physical activity (International Physical Activity Questionnaire-Short Form), and nutritional status (Mini Nutritional Assessment-Short Form [MNA-SF]). The relationship between physical activity and prognosis was examined using the log-rank test and Cox proportional hazards model. Multivariate logistic regression analysis was performed to examine factors associated with low physical activity. A receiver operating characteristic curve was used to calculate the MNA-SF cut-off value for low physical activity.</p><p><strong>Results: </strong>Low physical activity was significantly associated with survival (HR, 4.35; 95% confidence interval [CI], 1.16-16.27; p=0.029). The MNA-SF was a significant factor associated with low physical activity (OR, 0.71; 95% CI, 0.52 to 0.98; p=0.038). The MNA-SF cut-off value for low physical activity was 9.5 points.</p><p><strong>Conclusions: </strong>Low physical activity may be a prognostic factor in lung cancer, with nutritional status associated with low physical activity. Regular assessments using the MNA-SF cut-off and physical activity interventions considering nutrition are needed in clinical practice.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-09-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142139340","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":"Severe itch from miliaria managed with propantheline: a case report.","authors":"Ronald Wai, Brodie Sheahen, Benjamin Thomas","doi":"10.1136/spcare-2024-005111","DOIUrl":"https://doi.org/10.1136/spcare-2024-005111","url":null,"abstract":"<p><p>Itch is a common symptom faced in palliative care. In this case report, we present a patient in his 80s with a background of prostate and bladder cancer who fell and was subsequently immobile following a resultant vertebral fracture. He experienced persistent and distressing pruritis during his hospital stay. This case highlights the assessment and management of pruritis in a palliative care setting, eventually leading to a diagnosis of miliaria which was successfully treated with Propantheline.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-09-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142139341","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}
Hannah Joan Featherstone, Regina McQuilllan, John Lombard, Geraldine Foley
{"title":"Palliative care healthcare professionals' perspective on the Assisted Decision-Making (Capacity) Act 2015 in Ireland.","authors":"Hannah Joan Featherstone, Regina McQuilllan, John Lombard, Geraldine Foley","doi":"10.1136/spcare-2024-005065","DOIUrl":"10.1136/spcare-2024-005065","url":null,"abstract":"<p><strong>Objectives: </strong>People receiving end-of-life care often require assistance with decision-making. We aimed to ascertain from the perspective of palliative care healthcare professionals in Ireland, the impact of the Assisted Decision-Making (Capacity) Act 2015 (as amended) in Ireland on their practice for end-of-life care decision-making with patients and family caregivers.</p><p><strong>Methods: </strong>A qualitative study comprising focus groups was conducted with 22 healthcare professionals from different healthcare professions. Participants were recruited from a large regional specialist palliative care service in Ireland comprising two hospice sites. Data were analysed using thematic analysis.</p><p><strong>Results: </strong>Participants reported uncertainty about the Assisted Decision-Making (Capacity) Act 2015 (as amended) and emphasised a need for more public education to avoid misinterpretation of the Act. Participants felt that patients who need assistance with decision-making should be autonomous in decision-making but expressed concerns when patients made decisions about care that participants considered unwise. Participants considered that the Act would be beneficial in situations to support early communication between patients and their family caregivers about patient preferences for care.</p><p><strong>Conclusions: </strong>Larger scale multicentre examination of the Assisted Decision-Making (Capacity) Act among specialist palliative care providers in Ireland is needed to better understand its utility for practice.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141888444","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}
Emma Hooson, Fiona Hargreaves, Emily Holdsworth, Sarah Longwell, Alice Pullinger, Andrew Gill
{"title":"Anti-fibrinolytics for mucosal bleeding in adults with life-limiting illnesses: a systematic review.","authors":"Emma Hooson, Fiona Hargreaves, Emily Holdsworth, Sarah Longwell, Alice Pullinger, Andrew Gill","doi":"10.1136/spcare-2024-005042","DOIUrl":"https://doi.org/10.1136/spcare-2024-005042","url":null,"abstract":"<p><strong>Introduction: </strong>Patients with life-limiting illnesses are at increased risk of mucosal bleeding. Usual management includes anticipatory planning and sedation, alongside anti-fibrinolytics, despite a lack of evidence for their use. Anti-fibrinolytic agents (tranexamic acid and aminocaproic acid) produce effective haemostasis in different clinical settings. Our aim was to synthesise the evidence for anti-fibrinolytic medication use in adult patients with life-limiting illnesses at risk of, or experiencing, mucosal bleeding.</p><p><strong>Methods: </strong>We searched MEDLINE, Embase, CINAHL, Web of Science Conference Proceedings Citation Index, Cochrane Library databases and clinical trial registries (inception to January 2024) to identify studies investigating the use of anti-fibrinolytics in patients with life-limiting illnesses. Results were screened against a priori inclusion criteria, data ere extracted, and quality was appraised using a CASP (Critical Appraisal Skills Programme) checklist or BMJ risk of bias assessment. Data were analysed using narrative synthesis.</p><p><strong>Results: </strong>Five studies meeting our search criteria (one cohort and four case series) were included. Data relating from 87 patients were used in narrative synthesis. Anti-fibrinolytic therapy was used for active mucosal bleeding in 37 patients, of whom 30 achieved total bleeding cessation. Fifty patients received prophylactic anti-fibrinolytics, of whom 32 experienced no bleeding events. Adverse events were reported in 3 of 87 patients (arterial thrombus, severe thrombocytopenia and stomach cramps). Mortality and quality of life were not reported.</p><p><strong>Conclusion: </strong>Anti-fibrinolytics are generally well tolerated within this population and may prevent and reduce mucosal bleeding. Further high-quality research is suggested to investigate current practice and to compare anti-fibrinolytic with placebo in the management of bleeding in patients with life-limiting illnesses.</p><p><strong>Prospero registration number: </strong>CRD42022325529.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-08-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142104302","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}