BMC Palliative Care最新文献

{"title":"Telehealth-facilitated palliative care enables more people to die at home: An analysis of clinical outcomes and service activity data.","authors":"Helen M Haydon, Mojtaba Lotfaliany, Andrew Broadbent, Centaine L Snoswell, Anthony C Smith, Julie-Ann Brydon, Liam J Caffery, Emma E Thomas","doi":"10.1186/s12904-024-01622-0","DOIUrl":"10.1186/s12904-024-01622-0","url":null,"abstract":"<p><strong>Background: </strong>Telehealth-facilitated models of palliative care are a patient-focused way to deliver specialist care in or closer to home for people with a life-limiting illness. Telehealth can increase access to palliative care and support people experiencing symptoms of advanced disease in their own home, reducing the discomfort of travel. This retrospective cohort study examines the activity and outcomes of a regional telehealth-facilitated palliative care service to (i) describe which patients are most likely to use telehealth; and (ii) explore possible impacts of telehealth on patient outcomes including place of death, timely access to care, responsiveness to urgent needs and pain management.</p><p><strong>Methods: </strong>Analysis of service activity data (patient demographics, care modality, consultation frequency) and Palliative Care Outcomes Collaborative data registry (place of death, timely access to palliative care, responsiveness to urgent needs as measured by time in unstable phase, pain management) were undertaken. Outcomes were compared between patients who had no videoconsultations (n = 683) and those who had one or more videoconsultations (n = 524).</p><p><strong>Results: </strong>Compared to people who had no videoconsultations, those who had at least one appointment via video were: more than twice as likely to die at home and spent a shorter amount of time in the unstable phase of palliation. Mixed results were found regarding timely access to palliative care. There was no significant difference in pain management between consultation modes.</p><p><strong>Conclusion: </strong>Telehealth-facilitated palliative care has multiple benefits, including the increased likelihood of fulfilling someone's wish to die at home, often their preferred place of death.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"22"},"PeriodicalIF":2.5,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11759443/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143042740","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of specialist palliative care in Dutch hospitals between 2014 and 2020: a repeated survey.","authors":"N van Velzen, L Brom, M J D L van der Vorst, M L Kiers, M F M Wagemans, H Kazimier, M S A Boddaert, N J H Raijmakers, A Stoppelenburg","doi":"10.1186/s12904-025-01657-x","DOIUrl":"10.1186/s12904-025-01657-x","url":null,"abstract":"<p><strong>Background: </strong>Specialist palliative care teams (SPCTs) have significant benefits for patients with advanced disease or frailty, including improved quality of life, greater satisfaction with care, and less potentially inappropriate care at the end of life. Experienced SPCTs are recognised to have higher referral rates compared to novice teams. The aim of this study was to assess the development of hospital-wide integration of specialist palliative care (PC) and of SPCTs in Dutch hospitals between 2014 and 2020.</p><p><strong>Methods: </strong>Three cross-sectional surveys of SPCTs in Dutch hospitals were conducted in 2015, 2018 and 2021. Key members of the hospital SPCTs completed questionnaires about the preceding year that included items on hospital and PC program characteristics, hospital-wide integration of specialist PC, and SPCT characteristics (92 hospitals in 2015, 79 in 2018 and 74 in 2021). The analysis included hospitals with an operational SPCT, as determined by providing inpatient PC consultation services. Univariate analyses compared hospitals and SPCTs by year. Significance was determined by p-values < 0.05.</p><p><strong>Results: </strong>In 2014, 65% of participating hospitals provided inpatient PC consultations (n = 48). This increased to 92% in 2017 (n = 58) and 98% in 2020 (n = 48). Over the years, participating hospitals showed an increasing level of hospital-wide integration of specialist PC, such as an increased number of dedicated PC outpatient clinics (56% in 2020, compared with 47% in 2017 and 27% in 2014). The annual number of inpatient referrals to SPCTs has increased significantly over the years. The SPCTs have developed significantly in various aspects, including collaboration between primary and hospital care, the availability of services to patients at home and non-clinical activities.</p><p><strong>Conclusion: </strong>Over the years, Dutch hospitals have shown growth in hospital-wide integration of specialist PC. Specialist palliative care teams have made significant progress in increasing inpatient consultations, and in improving collaboration between primary and hospital care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"20"},"PeriodicalIF":2.5,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11755811/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143029805","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"'Striving to achieve control'. Registered nurses' experiences of palliative care quality during the COVID-19 pandemic - a qualitative study.","authors":"Tuva Sandsdalen, Ann Karin Helgesen, Vigdis Abrahamsen Grøndahl, Carina Bååth, Maria Larsson, Christina Melin Johansson, Cecilia Olsson, Maria Tillfors, Jane Österlind, Reidun Hov, Marie Dahlen Granrud","doi":"10.1186/s12904-024-01644-8","DOIUrl":"10.1186/s12904-024-01644-8","url":null,"abstract":"<p><strong>Background: </strong>Providing quality palliative care during a pandemic was challenging. Both specialist and community healthcare services cared for patients that faced life-threatening illness and who were influenced by the restrictions of the COVID-19 pandemic. Little knowledge has yet been provided on how registered nurses (RNs) experienced the palliative care quality during the COVID-19 pandemic. The aim of this study was to explore RN's experiences of providing palliative care quality during the COVID-19 pandemic.</p><p><strong>Methods: </strong>This qualitative study had a descriptive design. Semi-structured individual interviews were conducted between November 2021 and January 2022 with 18 RNs who worked in intensive care units in hospitals, dementia care or palliative care units in nursing homes in Norway during the pandemic. Data were analysed by using qualitative content analysis. The study was conducted and reported according to the COREQ's checklist.</p><p><strong>Results: </strong>Analysis of the data resulted in an overall theme: 'Striving to achieve control'. This theme comprised six categories: (1) when the toolbox does not fit; (2) protective equipment-social distance and opportunities for closeness; (3) unpredictable workday; (4) the right person to the right assignment at the right time; (5) presence and absence of relatives and friends; and (6) situations that required creativity. RNs had various experiences regarding how the quality of care was perceived; being worse, preserved, or in some cases even better than before the pandemic.</p><p><strong>Conclusions: </strong>The provision of quality palliative care was experienced by RNs as challenging during the pandemic. The pandemic forced them to be creative and to strive for control to provide the best palliative care possible given the situation. The results of this study may contribute to important knowledge for leaders, policy makers and RNs to learn from the COVID-19 pandemic and planning for future pandemics or crises. Especially to optimise factors perceived by RNs to be important for the palliative care quality, related to the specific situation and care context, to include the perspectives of those involved and take into consideration the time perspective of the pandemic.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"21"},"PeriodicalIF":2.5,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11756187/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143029871","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Future directions of spiritual care where spiritual care providers do not exist: a qualitative study.","authors":"Nattawan Meeprasertsagool, Patiphat Anuraktham, Arthit Chaithanasarn, Itthipon Wongprom","doi":"10.1186/s12904-025-01658-w","DOIUrl":"10.1186/s12904-025-01658-w","url":null,"abstract":"<p><strong>Introduction: </strong>Spiritual care is a fundamental aspect of palliative care, addressing the emotional, existential, and spiritual needs of patients facing life-threatening illnesses. However, in Thailand, the integration of spiritual care into the healthcare system remains underdeveloped due to the absence of professional spiritual care providers. This study aims to explore potential models and future directions for spiritual care within the palliative care context, focusing on how such care can be provided in the absence of professional spiritual care providers.</p><p><strong>Method: </strong>This study is a part of the mixed-method project Shoulders to Cry on: Care for spirituality when spiritual care providers do not exist, aimed at exploring spiritual care in settings without professional providers in Thailand. Qualitative in-depth interviews were conducted with 20 experts from palliative care, religious studies, and social work fields. The participants were recruited through purposeful sampling, and the data were analysed using inductive thematic analysis. Transcribed interviews were managed using NVivo software to identify key patterns and insights for future spiritual care models.</p><p><strong>Result: </strong>The analysis resulted in the development of the S.P.I.R.I.T. model, which outlines six essential themes for the future of spiritual care: (1) Spirituality Training Programs, (2) Providers for Spiritual Care, (3) Integrating Spiritual Care into Healthcare, (4) Research and Evidence-based Practices, (5) Interdisciplinary Collaboration, and (6) Transforming Care Systems. The findings suggest establishing structured training programs and interdisciplinary collaboration are crucial for effective spiritual care delivery.</p><p><strong>Conclusion: </strong>The study emphasises the need for integrating spiritual care into Thailand's healthcare system, focusing on education, research, and collaboration between healthcare providers and religious or community figures. The S.P.I.R.I.T. model offers a framework for addressing current gaps, which could facilitate Thailand's palliative care system in better meeting the spiritual needs of patients. Future studies should focus on establishing spiritual care education in palliative care, especially in resource-limited countries, and addressing local contextual obstacles.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"19"},"PeriodicalIF":2.5,"publicationDate":"2025-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11744905/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014562","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Palliative care needs and quality of life among adults with advanced chronic illnesses in low-income communities of Bangladesh.","authors":"Ahmed Hossain, Maruf Hasan, Taifur Rahman, Alounoud Almarzooqi, Syed Azizur Rahman, Heba Hijazi, Mohamad Alameddine","doi":"10.1186/s12904-024-01643-9","DOIUrl":"10.1186/s12904-024-01643-9","url":null,"abstract":"<p><strong>Objectives: </strong>Palliative care (PC) is an interdisciplinary approach aimed at improving the physical, psychological, and spiritual well-being of patients and families affected by life-threatening diseases. This study aimed to investigate the need for PC among critically ill patients and their quality of life (QOL) in low-income groups in Bangladesh.</p><p><strong>Methods: </strong>This cross-sectional study was conducted at four healthcare facilities from March to April 2023, involving 553 registered patients with advanced chronic conditions. After applying inclusion and exclusion criteria, 183 patients in the advanced stage of illness were included. We collected data on sociodemographic, comorbidities, disabilities, and the 10-item African Palliative Outcome Scale (APOS). The Supportive and Palliative Care Indicators Tool (SPICT) was used to identify individuals requiring PC. The study investigated patients with an Eastern Cooperative Oncology Group (ECOG) performance status of 3-4, indicating significant functional impairment, and explored QOL across four domains: physical health, psychological health, social relationships, and environmental factors.</p><p><strong>Results: </strong>The mean age of the 183 patients was 53.8 (± 14.53) years, with 69.5% being female. We found that 10.3% of patients with chronic illness required PC, particularly cancer patients (87%) and those with chronic kidney disease (CKD) (53.3%). The APOS scores indicated that family anxiety (48.6%) was the most burdensome issue, followed by severe pain (15.5%), severe worry about illness (22.4%), and feelings of life being unworthy (9.4%). Patients with severe functional limitations (ECOG 3-4) were significantly more likely to need PC (58%) compared to those with moderate or no limitations (ECOG 0-2) (24%). Among those requiring PC, 70.1% rated their QOL as poor or very-poor, while only 23.8% of patients not needing PC reported similar ratings. Female patients had poorer QOL than males across all domains, and those facing financial hardships also experienced significantly lower QOL.</p><p><strong>Conclusion: </strong>In Bangladesh's low-income communities, a significant proportion of patients with chronic illnesses require palliative care (PC) due to advanced conditions. The findings emphasize the importance of integrating PC early in the treatment process for cancer and CKD patients, as it can greatly improve their QOL and provide essential support for both patients and families. The results advocate for a holistic approach to PC that addresses physical, psychological, social, and environmental factors affecting patients' QOL.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"18"},"PeriodicalIF":2.5,"publicationDate":"2025-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11742788/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014564","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Moral distress, attitude toward death, and palliative care core competencies among ICU nurses: a cross-sectional study.","authors":"Mengyun Peng, Qin Guan, Xiaoling Zhu","doi":"10.1186/s12904-025-01655-z","DOIUrl":"10.1186/s12904-025-01655-z","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is becoming more widely acknowledged as a crucial part of intensive care for all patients with life-threatening illnesses. Intensive care unit (ICU) nurses regard as a lead role to facilitate this integration, which require nurses to possess professional and comprehensive core competencies. However, there is little knowledge about the palliative care core competencies among ICU nurses.</p><p><strong>Aims: </strong>To explore the association of moral distress, attitude toward death, and palliative care core competencies of ICU nurses, and explore the mediating role of attitude toward death.</p><p><strong>Methods: </strong>This is a quantitative, cross-sectional study. Random cluster sampling method was used. 342 ICU nurses were selected from 5 hospitals across 4 provinces in China. Participants were evaluated using the Moral Distress Scale-revised (MDS-R), the Attitude toward Death Profile-Revised (DAP-R), and the Palliative Care Nurses' Core Competencies Scale (PCNCC). This study followed the STROBE statement.</p><p><strong>Results: </strong>The level of palliative care core competencies among ICU nurses is moderate. Moral distress and negative attitude toward death are negatively associated while positive attitude toward death is positively associated with core competencies in palliative care among ICU nurses. Attitude toward death partially mediates the relationship between moral distress and core competencies.</p><p><strong>Conclusion: </strong>Link between moral distress, attitude toward death, and palliative care core competencies among ICU nurses was found in this study.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"16"},"PeriodicalIF":2.5,"publicationDate":"2025-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11740462/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014563","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Current trends in antimicrobial use and the role of antimicrobial stewardship in palliative oncology: a narrative review.","authors":"Bassem Awada, Aref Zribi, Ahmad Al Ghoche, Souha S Kanj","doi":"10.1186/s12904-025-01649-x","DOIUrl":"10.1186/s12904-025-01649-x","url":null,"abstract":"<p><strong>Background: </strong>The overuse of antimicrobials is prevalent in palliative oncology care, with up to 86.9% of terminal cancer patients receiving these agents during end-of-life care. This overutilization stems from recurrent infections due to immunosuppression, malnutrition, and frequent hospitalizations, as well as difficulty differentiating infection-related symptoms from cancer-related complications.</p><p><strong>Discussion: </strong>Antimicrobial use in palliative cancer care offers limited symptomatic relief while posing significant risks, including Clostridioides difficile infections, multidrug resistance, and patient dissatisfaction. The lack of clear survival benefit highlights the need for judicious antimicrobial use, particularly in terminally ill patients. Effective antimicrobial stewardship strategies, such as integrating infection management into goals-of-care discussions, early referrals to specialized palliative care teams, and implementing early intravenous-to-oral antimicrobial switches, are critical for balancing patient comfort and minimizing unnecessary antibiotic exposure.</p><p><strong>Conclusion: </strong>Optimizing antimicrobial use in palliative oncology care requires a multidisciplinary approach that prioritizes patient-centered goals, minimizes harm, and addresses misconceptions about antibiotic efficacy in end-of-life care. Antimicrobial stewardship programs, when tailored to palliative settings, play a vital role in reducing overuse and improving care quality in this vulnerable patient population.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"15"},"PeriodicalIF":2.5,"publicationDate":"2025-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11736969/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014560","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Assessing the relationship between the distress levels in patients with irreversible terminal delirium and the good quality of death from the perspective of bereaved family.","authors":"Pei Zhou, Cheng Tang, Jingyi Wang, Chunhua Zhang, Jun Zhong","doi":"10.1186/s12904-025-01652-2","DOIUrl":"10.1186/s12904-025-01652-2","url":null,"abstract":"<p><strong>Background: </strong>Research on achieving a good death for terminally delirious patients is scarce, with limited knowledge about the level of good death and influencing factors. This study investigates the level of good death among delirium patients, factors influencing it, and the correlation between distress, end-of-life care needs, and achieving a good death by surveying bereaved family members of deceased patients in Chinese hospitals.</p><p><strong>Methods: </strong>This cross-sectional study from January 2022 to January 2024 was conducted among bereaved family members of patients using an online questionnaire. The questionnaires consisted of (1) participants' demographic and disease-related questionnaires; (2) the Good Death Inventory (GDI) China version; (3) Terminal Delirium-Related Distress Scale (TTDS) China version; (4) the Care Evaluation Scale - short form (CES) China version. All data were analyzed using descriptive statistics, and the associated factors influencing good death were analyzed by multiple linear regression analyses.</p><p><strong>Result: </strong>A total of 263 subjects were enrolled. More males (63.5%) participated than females (36.5%), the mean age was 75.35 ± 13.90 years. Good quality of death was significantly and negatively related to the distress in patients with irreversible terminal delirium (r = -0.458, P<0.01).The multiple linear regression model indicates that TDDS score, CES score, types of diseases, smoking history, nutritional deficiency are important factor affecting the good quality of death.</p><p><strong>Conclusions: </strong>The good quality of death from the perspective of bereaved family, a negative correlation was found between the distress in patients with irreversible terminal delirium and good death. Medical staff should be more aware of good quality of death in patients, future research should expand sample sizes to include more demographic data, and explore the concept of a good death across different cultural contexts.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"14"},"PeriodicalIF":2.5,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11734416/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142985054","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Don't assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups.","authors":"Andrea Bruun, Leon Jordan, Jo Giles, Rhidian Hughes, Rebecca Anderson-Kittow, Irene Tuffrey-Wijne","doi":"10.1186/s12904-025-01646-0","DOIUrl":"10.1186/s12904-025-01646-0","url":null,"abstract":"<p><strong>Background: </strong>People with intellectual disabilities are less likely to have access to palliative care, and the evidence shows that their deaths are often unanticipated, unplanned for, and poorly managed. Within the general population, people from minoritised ethnic groups are under-represented within palliative care services. End-of-life care planning with people with intellectual disabilities from minoritised ethnic groups may be a way to address these issues. There is a huge gap in the evidence regarding intersectionality of intellectual disability and ethnicity within end-of-life care planning. This study explored the characteristics of effective and preferred end-of-life care planning approaches and resources for people with intellectual disabilities from minoritised ethnic groups.</p><p><strong>Methods: </strong>Nine focus groups and three semi-structured individual interviews were held with 41 participants from minoritised ethnic groups (11 family carers; 25 support staff; and five people with intellectual disabilities). Session recordings were transcribed verbatim and analysed using the framework analytical approach.</p><p><strong>Results: </strong>Participants thought that end-of-life care planning practices were dependent on the person's culture, ethnicity, and religion, and that it was important to follow these at the end-of-life. They deemed it important to discover and respect (and not assume) the individual's perspectives, values, needs, and wishes through a person-centred approach. Cultural attitudes to talking about death could hinder end-of-life care planning as participants perceived it as taboo. Disagreement was described as hindering end-of-life care planning, particularly when strong feelings about cultural and religious practices were involved. Staff highlighted the need for cultural and religious awareness, which could involve seeking information and receiving training. Opening the conversation about death and dying was seen as a potential facilitator for exploring end-of-life care planning.</p><p><strong>Conclusions: </strong>The study was committed to addressing issues of equity, diversity, and inclusion. It is the first study to explore perspectives on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups. It was deemed important that staff did not assume but discovered and respected the views and preferences of people with intellectual disabilities regarding culture and religion. There is an urgent need for more research into end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"13"},"PeriodicalIF":2.5,"publicationDate":"2025-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11731549/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142985058","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Determining timeframes to death for imminently dying patients: a retrospective cohort study.","authors":"Tricia O'Connor, Wai-Man Liu, Juliane Samara, Joanne Lewis, Karen Strickland, Catherine Paterson","doi":"10.1186/s12904-024-01637-7","DOIUrl":"10.1186/s12904-024-01637-7","url":null,"abstract":"<p><strong>Background: </strong>Clinicians are frequently asked 'how long' questions at end-of-life by patients and those important to them, yet predicting timeframes to death remains uncertain, even in the last weeks and days of life. Patients and families wish to know so they can ask questions, plan, make decisions, have time to visit and say their goodbyes, and have holistic care needs met. Consequently, this necessitates a more accurate assessment of empirical data to better inform prognostication and reduce uncertainty around time until death. The aims of this study were to determine the timeframes for palliative care patients (a) between becoming comatose and death, and (b) between being totally dependent and bedfast, and then comatose, or death, using Australia-modified Karnofsky Performance Status (AKPS) scores. The secondary aim was to determine if covariates predicted timeframes.</p><p><strong>Method: </strong>This is a large retrospective cohort study of 2,438 patients, 18 years and over, cared for as hospice inpatients or by community palliative care services, died between January 2017 and December 2021, and who collectively had 49,842 AKPS data points. An Interval-Censored Cox Proportional Hazards regression model was used.</p><p><strong>Results: </strong>Over 53% (n = 1,306) were comatose (AKPS 10) for longer than one day before death (mean = 2 days, median = 1, SD = 2.0). On average, patients were found to be totally dependent and bedfast (AKPS 20) for 24 days, before progressing to being comatose. A difference in life expectancy was observed at AKPS 20 among people with cancer (mean = 14.4, median = 2, SD = 38.8) and those who did not have cancer (mean = 53.3, median = 5, SD = 157.1).</p><p><strong>Conclusion: </strong>Results provide clinicians with validated data to guide communication when answering 'how long' questions at end-of-life. Knowledge of projected time to death can prompt timely conversations while the patient can understand and engage in meaningful conversations. The importance of considering covariates such as location and diagnosis in determining timeframes has been highlighted. Shared decision-making and essential person-centered end-of-life care can be planned.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"12"},"PeriodicalIF":2.5,"publicationDate":"2025-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11727548/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142980255","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}