BMC Palliative Care最新文献

{"title":"Translation, cross-cultural adaptation and validation of the Chinese version of supportive and palliative care indicators tool (SPICT-CH) to identify cancer patients with palliative care needs.","authors":"Zhishan Xie, Siyuan Tang, Claire E Johnson, Lin Xiao, Jinfeng Ding, Chongmei Huang","doi":"10.1186/s12904-024-01641-x","DOIUrl":"https://doi.org/10.1186/s12904-024-01641-x","url":null,"abstract":"<p><strong>Introduction: </strong>People diagnosed with cancer are the most frequent users of palliative care. However, there are no specific standards for early identifying patients with palliative care needs in mainland China. The Supportive and Palliative Care Indicators tool (SPICT) can identify patients with cancer who are in need of palliative care across healthcare settings.</p><p><strong>Objective: </strong>To translate, cross-cultural adapt the SPICT and validate it among cancer patients with palliative care needs in a Chinese healthcare context.</p><p><strong>Method: </strong>We translated and culturally adapted the SPICT from English into Chinese, following both Beaton's and WHO's recommendations: (1) initial translation, (2) synthesis, (3) back translation, (4) expert committee review, and (5) pretest. The psychometric properties (e.g., content validity, internal consistency, and inter-rater reliability) were analyzed. Convenience sample was used to recruit 212 hospitalized cancer patients between January and August 2023. Their needs were assessed by two nurses within 24hours to determine the inter-rater reliability and stability of the Mandarin version of SPICT (SPICT-CH).</p><p><strong>Results: </strong>All of 36 items were retained in response to expert review. The Scale-Content Validity Index/Ave (S-CVI/Ave) of the SPICT-CH was 0.98, demonstrating very strong content validity. The SPICT-CH exhibited good coherence (Cronbach's alpha = 0.76) and reliability (Kappa = 0.71, 95% CI 0.71-0.72, P < 0.05).</p><p><strong>Conclusion: </strong>The SPICT-CH has good content validity and acceptable reliability among cancer patients within a Chinese hospital setting. This instrument can be effectively integrated into routine clinical practice to early identify patients who need palliative care in mainland China.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"4"},"PeriodicalIF":2.5,"publicationDate":"2025-01-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11708097/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142957284","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":"Job burnout and resilience among palliative care professionals in china: a qualitative study.","authors":"Fang Tan, Yan Wu, Na Li, Chuan Zhang, Shan Chen, Lan Huang, Yang Chen, Jianjun Jiang, Qian Deng","doi":"10.1186/s12904-024-01638-6","DOIUrl":"https://doi.org/10.1186/s12904-024-01638-6","url":null,"abstract":"<p><strong>Background: </strong>Medical professionals who are engaged in palliative care commonly experience negative emotions resulting from the pain and grief experienced by patients and family members, which results in enormous psychological pressure for professionals, and the risk related to job burnout is significantly greater.</p><p><strong>Objective: </strong>We aimed to explore the factors influencing job burnout and resilience among palliative care professionals.</p><p><strong>Methods: </strong>We conducted a qualitative study using semistructured interviews and purposeful sampling methods. Face-to-face interviews were carried out from September 2023-April 2024 in the palliative care ward of one of the top three hospitals in a province of China. A total of 22 palliative care professionals were interviewed. The interview data were coded and relevant topics were extracted and summarized from two perspectives: factors influencing job burnout among palliative care professionals and resilience to job burnout. Data analysis was guided by Colaizzi's seven-step method.</p><p><strong>Results: </strong>This study identified personal, work, institutional, and social factors affecting job burnout among palliative care professionals in China. Personal factors include the original intention of engaging in palliative care, psychological qualities, and ways of coping with stress. Work factors include work intensity and environment and the characteristics and nature of palliative care work. Institutional and social factors include promotion mechanisms, wages and benefits, government policy support and professional recognition, as well as cultural conflicts from traditional China. The factors that affect resilience include personal internal factors and external factors. Personal internal factors come from good self-regulation and emotional balance, while external factors come from an increasingly sophisticated social support system and effective intervention measures to cope with job burnout.</p><p><strong>Conclusion: </strong>Our research found that many factors affect the job burnout and resilience of palliative care professionals. Promoting the construction of a professional team in palliative medicine, rational allocation of human resources, improving the welfare benefits of professionals, enhancing their social status, safeguarding their legitimate rights and interests, establishing effective emotional and social support systems, and implementing effective intervention measures in cultural contexts are all effective ways to reduce work fatigue and enhance resilience. Future research needs to investigate intervention measures to address or prevent burnout.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"2"},"PeriodicalIF":2.5,"publicationDate":"2025-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11702277/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142957278","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":"Xerostomia: a silent burden for people receiving palliative care - a qualitative descriptive study.","authors":"Emir Murphy Dourieu, Dominika Lisiecka, William Evans, Patricia Sheahan","doi":"10.1186/s12904-024-01617-x","DOIUrl":"https://doi.org/10.1186/s12904-024-01617-x","url":null,"abstract":"<p><strong>Background: </strong>The prevalence of dry mouth in the palliative care population is well documented and increases due to polypharmacy, radiotherapy and systemic conditions. Saliva as a lubricant for the mouth and throat has implications for swallowing, chewing, and speech. The literature about the experience of xerostomia (perceived feeling of dry mouth) in palliative care is scarce. Clinical evidence suggests that xerostomia has a negative impact on people's comfort, however, no recent studies explored this impact in detail. This new knowledge is paramount to adhere to the principles of palliative care.</p><p><strong>Aims: </strong>To evaluate the impact of xerostomia on the lives of people receiving palliative care with particular reference to eating and speaking.  DESIGN: A qualitative descriptive study (interview design). Thematic analysis was used for data analysis.</p><p><strong>Setting: </strong>A single specialist palliative care centre in Ireland.</p><p><strong>Results: </strong>The majority of participants (35/40) had cancer. Xerostomia was reported to have multiple physical, psychological, and daily life consequences. Participants provided insights into the impact of xerostomia on sleeping, eating, talking, denture wearing, and they described in detail their intra-oral sensations associated with xerostomia. The negative effect of xerostomia on speech was reported as the most significant to participants.</p><p><strong>Conclusion: </strong>Xerostomia has a profound impact on the daily lives of people receiving palliative care, including physical and psychological consequences. Speaking is often affected, which can impede the person's ability to communicate. There needs to be increased awareness of the impact of xerostomia and more research is required to understand how best to manage xerostomia in a palliative care setting.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"1"},"PeriodicalIF":2.5,"publicationDate":"2025-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142933181","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Awareness-raising activities of advance care planning for community residents: a nationwide cross-sectional survey in Japan.","authors":"Masayo Kashiwagi, Noriko Morioka, Miho Terajima, Kyoko Hanari, Takehiro Sugiyama, Ryota Inokuchi, Nanako Tamiya","doi":"10.1186/s12904-024-01635-9","DOIUrl":"10.1186/s12904-024-01635-9","url":null,"abstract":"<p><strong>Background: </strong>Japan is implementing awareness-raising of advance care planning for older adults; however, only 451 out of 1 741 municipalities were engaged in advance care planning awareness-raising activities among residents, according to a 2017 survey. This study examined advance care planning awareness-raising activities among community residents by local governments after the 2018 revision of the government guidelines, as well as utilization of the revised guidelines, issues in awareness-raising activities, and directions for future activities.</p><p><strong>Methods: </strong>This cross-sectional questionnaire survey was conducted in prefectures and municipalities nationwide in 2022. Questions included the status, content, and issues of advance care planning awareness-raising activities for community residents. A multi-level logistic regression analysis was used to examine the characteristics of municipalities engaged in activities.</p><p><strong>Results: </strong>Responses were received from 43 prefectures (response rate: 91.5%) and 912 municipalities (response rate: 53.1%). Of the municipalities, 63.6% (n = 580) reported \"active\" advance care planning awareness-raising. A high financial capability index and implementation of awareness-raising activities in the prefecture where the municipality was located were significantly associated with its awareness-raising activities. Municipalities engaged in awareness-raising activities reported experiencing issues related to the objectives, methods, and outcome evaluation of the activities.</p><p><strong>Conclusions: </strong>Five-hundred eighty municipalities engaged in awareness-raising activities-a number that had increased significantly since the 2017 survey. Municipalities that could not engage in awareness-raising activities should receive financial support and other forms of support from prefectures. Furthermore, to ensure that municipalities clarify the purpose of awareness-raising and the desired outcomes, indices for quantitatively measuring results and achievements should be developed.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"303"},"PeriodicalIF":2.5,"publicationDate":"2024-12-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11686830/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142907813","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":"Specialized palliative outpatient clinic care involvement associated with decreased end-of-life hospital costs in cancer patients, a single center study.","authors":"Anna-Maria Tolppanen, Annamarja Lamminmäki, Vesa Kataja, Kristiina Tyynelä-Korhonen","doi":"10.1186/s12904-024-01633-x","DOIUrl":"10.1186/s12904-024-01633-x","url":null,"abstract":"<p><strong>Background: </strong>Studies show that hospital deaths bring significant health care costs, and the involvement of specialized palliative care can help to reduce these costs. The aim of this retrospective registry-based study was to evaluate end-of-life hospital costs in patients dying in a university hospital oncology ward, with or without specialized palliative outpatient clinic contact at any timepoint.</p><p><strong>Methods: </strong>The study population consists of all patients who died in the Kuopio University Hospital oncology ward in the years 2012-2018 (n = 457). Hospital costs in the last 30 days of life and data on treatment decisions and background factors were gathered. Costs for patients with and without palliative care contact were compared. Effects of various variables on the costs were analyzed using gamma regression model.</p><p><strong>Results: </strong>Both the last 14 days' and 30 days' hospital costs before death were significantly lower among those 65 patients [14.2%] who had had a specialist palliative care contact. This was seen in inpatient day costs, microbiology, radiation therapy, laboratory, drug, radiology, and total costs. In a multivariate analysis including age, gender, year of death, time from diagnosis to death, and cancer type, the costs for 30 days prior to death were 33% lower in those patients who had had palliative care contact.</p><p><strong>Conclusions: </strong>Our results provide first indications that a contact to specialist palliative care in an outpatient clinic may reduce end-of-life hospital care costs in hospital-deceased cancer patients.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"302"},"PeriodicalIF":2.5,"publicationDate":"2024-12-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11681669/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142899653","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":"Australian Palliative Care Outcome Collaboration (PCOC) phases: cross cultural adaptation and psychometric validation for Polish palliative settings.","authors":"Katarzyna Wilk-Lelito, Anna Białoń-Janusz, Magdalena Kowalczyk, Elżbieta Wesołek, Tomasz Grądalski","doi":"10.1186/s12904-024-01616-y","DOIUrl":"10.1186/s12904-024-01616-y","url":null,"abstract":"<p><strong>Background: </strong>Measuring palliative care quality requires the application of evaluation methods to compare clinically meaningful groups of patients across different settings. Such protocols are currently lacking in Poland. The Australian Palliative Care Outcome Collaboration (PCOC) concept of Palliative phases precisely defines patients, enables episodes of care extraction for benchmarking and further assessment of service delivery. The present study is aimed at developing cross-cultural adaptation and psychometric validation for a Polish translation of Palliative phases.</p><p><strong>Methods: </strong>Forward and backward translation was performed to obtain a Polish draft version regarding definitions of the PCOC phases. The draft was then subjected to linguistic and graphical transformations in the process of cognitive interviewing. The acceptability of the Polish version was assessed based on staff perceptions of fit, ease of assignment and familiarity with the patient's and family's situation. Finally, cross-sectional analysis was conducted among 313 hospice and home-care palliative patients. The attending doctor and nurse independently evaluated the same patients using the Polish version of the PCOC phases to establish inter-rater reliability values. Then, to determine its construct validity, the PCOC indicators were referred to patients' prognosis, functioning level and PALCOM scale scores.</p><p><strong>Results: </strong>A Polish draft version of the PCOC phases was prepared. Seven of the 13 interviewees reported problems with comprehending this proposal. This prompted changes being made to linguistic and graphical aspects of the tool. The majority of respondents preferred the final graphical scheme of phases, prepared after round-two of interviews. Scheme application acceptability was confirmed in a practical trial. The respondents' overall conviction regarding degree of fit and assignment ease was high. Seventy percent of PCOC phase assignments was in agreement, and a moderate level or inter-rater reliability was obtained (kappa 0.573). The highest proportion of totally bed-bound patients with the shortest survival prognosis was observed for the terminal phase, while the highest complexity of palliative care needs was noted for the unstable one.</p><p><strong>Conclusions: </strong>The PCOC phases tool appears to be a valuable resource for specialists in palliative care settings to support audit measures. Practical training is recommended prior to its implementation in routine practice.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"301"},"PeriodicalIF":2.5,"publicationDate":"2024-12-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11674211/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142899648","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":"Differences in the palliative care phase between patients with nonmalignant pulmonary disease and lung cancer: a retrospective study.","authors":"Hanna Pihlaja, Heidi A Rantala, Silja Soikkeli, Milja Arminen, Sonja Aho, Sirpa Leivo-Korpela, Juho T Lehto, Reetta P Piili","doi":"10.1186/s12904-024-01618-w","DOIUrl":"10.1186/s12904-024-01618-w","url":null,"abstract":"<p><strong>Background: </strong>Patients with chronic nonmalignant pulmonary disease and lung cancer both need palliative care, but palliative care services may be better adjusted to serve cancer patients. We compared the timing and clinical practice of palliative care and acute hospital usage during the last year of life in patients with nonmalignant pulmonary disease or lung cancer.</p><p><strong>Methods: </strong>This was a retrospective study of all patients in a palliative care phase (palliative goal of care) with nonmalignant pulmonary disease or lung cancer who were treated at Tampere University Hospital, Finland, during the years 2018-2020. The data were collected from the hospital's medical records. Comparisons between the groups were performed by using the Pearson chi-square test, Fisher's exact test, or Mann‒Whitney U test when appropriate. Survival was estimated by using the Kaplan‒Meier method.</p><p><strong>Results: </strong>The study population consisted of 107 patients with nonmalignant pulmonary disease and 429 patients with lung cancer. Patients with nonmalignant pulmonary disease survived longer in the palliative care phase than patients with lung cancer (115 vs. 59 days, p < 0.001). Compared to lung cancer patients, patients with nonmalignant disease received a palliative care specialist consultation more often during hospitalization (66% vs. 45%, p < 0.001) than during a preplanned outpatient visit (6% vs. 52%, p < 0.001), were less likely to be referred to palliative care pathway (79% vs. 87%, p = 0.033), and spent more days in an acute care hospital during the last year of life (median of 10 vs. 6 days, p = 0.023). Contrary to lung cancer patients, referral to the palliative care pathway was not significantly associated with decreased acute hospital resource usage during the last month of life among patients with nonmalignant pulmonary disease.</p><p><strong>Conclusions: </strong>Compared to lung cancer patients, patients with nonmalignant pulmonary disease had longer palliative care phases but fewer visits to the palliative care outpatient clinic and fewer referrals to the palliative care pathways. Palliative care arrangements seemed to have more influence on the end-of-life care of lung cancer patients. There is a need for long-term palliative care services with better abilities to meet the special needs of patients with nonmalignant pulmonary disease.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"299"},"PeriodicalIF":2.5,"publicationDate":"2024-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11670334/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142899651","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":"\"I have never felt so alone and vulnerable\" - A qualitative study of bereaved people's experiences of end-of-life cancer care during the Covid-19 pandemic.","authors":"Lara Burton, Silvia Goss, Stephanie Sivell, Lucy E Selman, Emily Harrop","doi":"10.1186/s12904-024-01619-9","DOIUrl":"10.1186/s12904-024-01619-9","url":null,"abstract":"<p><strong>Background: </strong>COVID-19 drastically affected healthcare services world-wide. In the UK, many cancer services were overwhelmed as oncology staff were reassigned, and cancer diagnoses and treatments were delayed. The impact of these pressures on end-of-life care for patients with advanced cancer and their relatives is not well understood.</p><p><strong>Methods: </strong>Secondary thematic analysis of qualitative survey and interview data, collected from family members and close friends bereaved by cancer, as part of a national COVID-19 bereavement study (Survey N = 156; Interview N = 10).</p><p><strong>Results: </strong>Four key themes were identified: The impact of COVID-19 on contact with patients towards the end of life; Mixed experiences of support for family members; Variable communication quality from health and social care professionals; Prioritisation of COVID-19 and its impact on patient care. Hospital care was perceived more negatively than community care in almost all areas, while support from cancer charities and district nurses was appreciated the most. Almost all participants felt that COVID-19 was detrimentally prioritised over care for their relative/friend.</p><p><strong>Conclusions: </strong>People bereaved by cancer were uniquely affected by pandemic-restrictions and disruptions to services. As services re-build post-pandemic, improvements in palliative care in hospitals, investment into community care, and ensuring compassionate communication with patients and families must be prioritised, alongside preparedness for future pandemics or similar events.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"300"},"PeriodicalIF":2.5,"publicationDate":"2024-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11670489/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142899644","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":"Validity and reliability of the integrated palliative care outcome scale (IPOS) in Korea: a multicenter study of terminally ill cancer patients.","authors":"So-Jung Park, Yujin Park, Mira Han, Sun-Hyun Kim, In Cheol Hwang, Go-Un Woo, Yoo Jeong Lee, Young Sung Kim, Hyun Jung Jho, Yoon Jung Chang","doi":"10.1186/s12904-024-01630-0","DOIUrl":"10.1186/s12904-024-01630-0","url":null,"abstract":"<p><strong>Background: </strong>The Integrated Palliative care Outcome Scale (IPOS) is a key tool for assessing the quality of palliative care using patient-reported outcomes. This study aimed to culturally adapt and translate the IPOS to Korean and verify its psychometric properties for use in palliative care settings.</p><p><strong>Methods: </strong>The IPOS was translated and culturally adapted, followed by validation in 119 terminally ill cancer patients and 28 healthcare providers across six Hospice and Palliative Care Units from September 2023 to January 2024. Reliability was assessed using internal consistency, test-retest reliability, and inter-rater reliability. Concurrent validity was assessed using Spearman's correlation coefficients between the IPOS items and the corresponding EORTC QLQ-C15-PAL and the corresponding FACIT-Sp-12.</p><p><strong>Results: </strong>The Korean IPOS demonstrated good internal consistency, with Cronbach's alphas of 0.74 for patients and 0.81 for staff. The test-retest reliability showed moderate-to-good stability, with an intra-class correlation coefficient of 0.722 for the IPOS total score. Concurrent validity was supported by moderate correlations with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL) and Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp-12). Known-group validity was demonstrated by significant differences in the IPOS scores across Phase of Illness.</p><p><strong>Conclusion: </strong>The Korean IPOS is reliable and valid for assessing palliative care outcomes. This validation supports its use in clinical practice and research and provides a robust framework for evaluating and improving palliative care delivery in Korea.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"298"},"PeriodicalIF":2.5,"publicationDate":"2024-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11665220/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142883401","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":"Decision-making about palliative sedation for patients with cancer: a qualitative study in five European countries linked to the Palliative sedation project.","authors":"Michael Van der Elst, Sheila Payne, Maria Arantzamendi, Nancy N Preston, Ian Koper, Alazne Belar, Holger Brunsch, Séverine M Surges, Claudio Adile, Yasmine Grassi, Zoe Cockshott, Jeroen Hasselaar, Johan Menten","doi":"10.1186/s12904-024-01612-2","DOIUrl":"10.1186/s12904-024-01612-2","url":null,"abstract":"<p><strong>Background: </strong>Palliative sedation refers to the proportional use of titrated medication which reduces consciousness with the aim of relieving refractory suffering related to physical and psychological symptoms and/or existential distress near the end of life. Palliative sedation is intended to be an end of life option that enables healthcare professionals to provide good patient care but there remains controversy on how it is used. Little is known about decision-making processes regarding this procedure. The aim of this study was to explore decision-making processes in palliative sedation based on the experiences and perceptions of relatives and healthcare professionals.</p><p><strong>Methods: </strong>We conducted a qualitative interview study with dyads (a bereaved relative and a healthcare professional) linked to 33 deceased patient with cancer who had palliative sedation, in seven in-patient palliative care settings in five countries (Belgium, Germany, Italy, the Netherlands, and Spain). A framework analysis approach was used to analyse the data.</p><p><strong>Results: </strong>Two main themes are defined: 1) Decision-making about palliative sedation is a complex iterative process, 2) Decision-making is a shared process between the patient, healthcare professionals, and relatives. Decision-making about palliative sedation appears to follow an iterative process of shared information, deliberation, and decision-making. The patient and healthcare professionals are the main stakeholders, but relatives are involved and may advocate for, or delay, the decision-making process. Starting palliative sedation is reported to be an emotionally difficult decision for all parties.</p><p><strong>Conclusions: </strong>As decision-making about palliative sedation is a complex and iterative process, patients, relatives and healthcare professionals need time for regular discussions. This requires a high level of engagement by healthcare professionals, that takes into account patients' wishes and needs, and helps to facilitate decision-making.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"295"},"PeriodicalIF":2.5,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11662527/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142873095","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}