medRxiv - Palliative Medicine最新文献

{"title":"Novel Approach to Advance Directive Training : Palliative Fellow Led Workshop Feasible and Effective in Increasing Confidence in End of Life Conversations","authors":"Chelsea Chang, Jose Rafael Cano Penaloza, Juan Lopez-Alvarenga, Josenny Rodriguez-Paez, Sonya Montes, Meghana Rao","doi":"10.1101/2024.03.05.24303812","DOIUrl":"https://doi.org/10.1101/2024.03.05.24303812","url":null,"abstract":"Despite the benefits of Advance directives, approximately only 1 in 3 U.S adults have documented advance directives. In medical school and residency, learners are often not taught or given very brief information on conducting end-of-life planning conversations with patients. Due to this deficiency, some institutions have conducted advance directive workshops but not many have been both palliative fellow and resident led, though some have been led by a geriatric fellow. Therefore, we approached advance directives with a resident and palliative fellow-led workshop. We aimed to develop and conduct a workshop on advance directives to assess feasibility and effectiveness. We sent a survey to 52 residents prior to two one-hour didactic sessions. For the first session, a small group of residents discussed common terminology and the tools available to help patients complete advanced directives in the outpatient setting. A hospice and palliative care fellow led the second session and focused on patient communication and approach. Our results showed that the workshop was well-received and improved resident confidence in discussing advance directives with patients. In conclusion, a resident and palliative fellow-led advance directive workshop for internal medicine residents was feasible and effective in increasing resident confidence.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"25 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140054926","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology","authors":"Xiaoxiao J Kwete, Afsan Bhadelia, Hector Arreola-Ornelas, Osca Mendez, William E. Rosa E. Rosa, Stephen Connor, Julia Downing, Dean Jamison, David Watkins, Renzo Calderon, Jim Cleary, Joe Friedman, Liliana De Lima, Christian Ntizimira, Tania Pastrana, Pedro E. Perez-Cruz, Dingle Spence, M.R. Rajagopal, Valentina Vargas Enciso, Eric L. Krakauer, Lukas Radbruch, Felicia Marie Knaul","doi":"10.1101/2024.02.26.24303409","DOIUrl":"https://doi.org/10.1101/2024.02.26.24303409","url":null,"abstract":"Inequities and gaps in palliative care access are a serious impediment to health systems especially low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. In this paper, we present an updated methodology - SHS2.0 - building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. Our updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. We also share detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. We discuss the opportunities for applying SHS to future policy making, assess future research priorities particularly in light of the dearth of data from low- and middle-income countries, and share directions for future work to develop SHS 3.0.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"2016 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139978639","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Prevalence of falls in the last weeks of life and relationship between falls, independence, and quality of dying: A secondary analysis of a large prospective cohort study","authors":"Hiroyuki Otani, Shimoinaba Junichi, Kashiwagi Hideyuki, Morita Tatsuya, Maeda Isseki, Yokomichi Naosuke, Hamano Jun, Yamaguchi Takashi, Takashi Yamaguchi, Masanori Mori","doi":"10.1101/2024.02.12.24302685","DOIUrl":"https://doi.org/10.1101/2024.02.12.24302685","url":null,"abstract":"Objective:\u0000To determine the frequency of falls and their serious complications in palliative care units (PCUs), as well as explore the complex interplay between falls, independence, and quality of dying.\u0000Methods: A secondary analysis of a large prospective cohort study of 23 PCUs in Japan was conducted from January 2017 to June 2018. Palliative care specialist physicians recorded whether patients experienced falls, serious complications from falls, activities that led to falls, independence (workability in the last days and use of indwelling urinary catheter), and Good Death Scale.\u0000Results: Of the 1,633 patients evaluated, 9.2% (95% Confidence interval [95% CI 7.8 to 11]) experienced falls within 30 days prior to death. The patients who fell were mostly men, had eastern cooperative oncology group performance status 3 on admission, a longer estimated prognosis on admission, and delirium during hospitalization. Serious falls causing fractures or intracranial hemorrhages were rare (0.3% [95% CI 0.038 to 0.57]). The most common reason for falls was the need to use the toilet. The Good Death Scale and indwelling urinary catheter use were not significantly associated with falls. Conclusion: Falls occur in approximately 10% of patients in PCUs, but serious complications are rare. The relationship between falls, independence, and quality of dying is complex; that is, a fall may not be necessarily bad, if it is the result of respect for the patient's independence. Healthcare providers need to consider fall prevention while supporting patients desire to move on their own to maintain independence.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"51 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139758019","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Outcomes of prognostication in people living with advanced cancer: a qualitative study to inform a Core Outcome Set","authors":"Caitlin Spooner, Bella Vivat, Nicola White, Patrick Stone","doi":"10.1101/2024.02.08.24302518","DOIUrl":"https://doi.org/10.1101/2024.02.08.24302518","url":null,"abstract":"Background: Studies of prognostication in advanced cancer use a wide range of outcomes and outcome measures, making it difficult to compare these studies and their findings. Core Outcome Sets facilitate comparability and standardisation between studies and would benefit future prognostic research. This qualitative study is the second step in developing such a Core Outcome Set, with the aim to explore the perceptions and experiences of patients with advanced cancer, informal caregivers, and clinicians regarding the potential outcomes of prognostication. Methods: We conducted semi-structured interviews with patients living with advanced cancer (n=8), informal caregivers (n=10), and clinicians (n=10) recruited from palliative care services across three sites in London, United Kingdom. Interviews were conducted in-person, via telephone, or video conferencing, and were audio-recorded. Data were analysed using a thematic framework analysis approach. Findings were compared with outcomes derived from a previously published systematic review. Results: We identified 33 outcomes, 16 of which were not previously reported in the literature. We grouped outcomes into 10 domains, using a modified COMET taxonomy: 1) mortality/survival; 2) general physiological/clinical outcomes; 3) psychiatric outcomes; 4) spiritual/religious/existential functioning/wellbeing; 5) emotional functioning/wellbeing; 6) social functioning; 7) delivery of care; 8) perceived health status; 9) personal circumstances; 10) societal/carer burden. These findings highlighted discrepancies between the priorities of existing research and those of stakeholders. Conclusions: This study offers valuable insights into outcomes significant to key stakeholders, underscoring the need for a patient-centred approach in research and clinical practice in prognostication in advanced cancer. These outcomes will play a key role in the development of a Core Outcome Set to assess the impact of prognostication in advanced cancer.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"111 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139757909","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effectiveness of Psychosocial care interventions in improving the Quality of Life for Adult Patients with Cancer in low-and middle-income countries (LMICs): A Systematic Review and Meta-Analysis Protocol","authors":"David Kavuma, EVe Namisango, Julia Downing, Nixon Nionzima, Alison Annet Kinengyere, Simon Kasasa, Frederick Edward Makumbi, Anthony Ekwaro Obuku, Fred Nuwaha Ntoni","doi":"10.1101/2024.02.08.24302499","DOIUrl":"https://doi.org/10.1101/2024.02.08.24302499","url":null,"abstract":"Background\u0000Psychosocial care interventions are part and parcel of cancer care and are known for their significant contribution to the improvement of the quality of life (QoL) for cancer patients and their families. Assessment of the QoL of patients with cancer and their families has become critical in cancer care nowadays since it guides health care providers in making informed decisions during the care process. The aim of this meta-analysis is to synthesise the online literature of primary studies from LMICs in order to understand the effectiveness of psychosocial care interventions towards the improvement of the QoL of adult patients with cancer. Methods\u0000This study will be done in tandem with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards. Primary studies that would have investigated the effectiveness of psychosocial care interventions on quality of life of adult cancer patients will be identified through searches in the various electronic databases that are known to produce optimal and efficient searches for systematic reviews and meta-analyses include: Ovid MEDLINE(R), PubMed, EMBASE, APA PsychINFO, Web of Science, PubMed, and Google Scholar. Studies published between 1st January 2002 and 31st December 2023 in any LMIC, will be searched. After developing the meta-analysis question, we have developed a search string from the PICOST (population, intervention, comparison, outcome, study design, setting and Time-frame) model with a limitation on study design. Discussion\u0000This systematic review and meta-analysis will gather evidence from primary studies on the effectiveness of psychosocial care interventions in improving the QoL for adult patients with cancer in LMICs. Protocol registration: This protocol was registered on 5th June 2023 and its registration number is CRD42023421561.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"54 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139757913","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An observational study of survival outcomes of people referred for ‘fast-track’ end-of-life care funding in a District General Hospital; too little too late?","authors":"Jo Morrison, Cherry Chowdhary, Ryan Beazley, James Richards, Charlie Davis","doi":"10.1101/2022.12.23.22283895","DOIUrl":"https://doi.org/10.1101/2022.12.23.22283895","url":null,"abstract":"<strong>Background</strong> End-of-life care frequently requires support for people to die where they feel safe and well-cared for. End-of-life care may require funding to support dying outside of hospital. In England, funding is procured through Continuing Healthcare Fast-Track funding, requiring assessment to determine eligibility. Anecdotal evidence suggested that Fast-Track funding applications were deferred where clinicians thought this inappropriate due to limited life-expectancy.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"137 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138521888","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Impact on Staff of Providing Non-Invasive Advanced Respiratory Support During the Covid-19 Pandemic– A Qualitative Study in an Acute Hospital","authors":"David Wenzel, Lucy Bleazard, Eleanor Wilson, Christina Faull","doi":"10.1101/2022.03.21.22272700","DOIUrl":"https://doi.org/10.1101/2022.03.21.22272700","url":null,"abstract":"<strong>Objectives</strong> To explore the experiences of healthcare workers of providing Non-Invasive Advanced Respiratory Support (NARS) to critically unwell patients with covid-19.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"227 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138521890","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Existential suffering as a motive for assisted suicide: difficulties, acceptability, management and roles from the perspectives of Swiss professionals","authors":"Marie-Estelle Gaignard, Sophie Pautex, Samia Hurst","doi":"10.1101/2022.03.21.22272665","DOIUrl":"https://doi.org/10.1101/2022.03.21.22272665","url":null,"abstract":"<strong>Background</strong> Existential suffering is often a part of the requests for assisted suicide (AS). Its definitions have gained in clarity recently and refer to a distress arising from an inner realization that life has lost its meaning. There is however a lack of consensus on how to manage existential suffering, especially in a country where AS is legal and little is known about the difficulties faced by professionals confronted with these situations.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"136 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138521889","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Toward a preventive approach to prolonged grief disorder in palliative care: Insecure attachment moderates the impact of perceived support on the severity of symptoms","authors":"Vittorio Lenzo, Alberto Sardella, Cristina Faraone, Maria C. Quattropani","doi":"10.1101/2022.03.18.22272629","DOIUrl":"https://doi.org/10.1101/2022.03.18.22272629","url":null,"abstract":"<strong>Objective</strong> This study aimed to investigate the relationships between the perceived support at the time of assistance, insecure attachment (i.e., avoidance and anxious attachment factors), and the prolonged grief symptoms in family caregivers of palliative care patients deceased for at least one year. We also investigated the moderating role of insecure attachment in the relationship between perceived support and intensity of prolonged grief symptoms.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"220 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138521891","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"“I wanna live and not think about the future” What place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study","authors":"Jonathan Koffman, Clarissa Penfold, Laura Cottrell, Bobbie Farsides, Catherine J Evans, Rachel Burman, Richard Nicholas, Stephen Ashford, Eli Silber","doi":"10.1101/2022.03.10.22272188","DOIUrl":"https://doi.org/10.1101/2022.03.10.22272188","url":null,"abstract":"<strong>Background</strong> Little is known about how people with multiple sclerosis and their families comprehend advance care planning (ACP) and its relevance in their lives.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"214 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138521893","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}