Camilla Wall, Karin Blomberg, Elisabeth Bergdahl, Helena Sjölin, Fredrik Alm
{"title":"Patients near death receiving specialized palliative home care being transferred to inpatient care - a registry study.","authors":"Camilla Wall, Karin Blomberg, Elisabeth Bergdahl, Helena Sjölin, Fredrik Alm","doi":"10.1186/s12904-024-01549-6","DOIUrl":"10.1186/s12904-024-01549-6","url":null,"abstract":"<p><strong>Background: </strong>The majority of palliative care patients express a preference for remaining at home for as long as possible. Despite progression of disease there is a strong desire to die at home. Nonetheless, there are transfers between care settings, demonstrating a discrepancy between desired and actual place of death.</p><p><strong>Aim: </strong>To map the prevalence of patients near death undergoing specialized palliative home care and being transferred to inpatient care in Sweden.</p><p><strong>Methods: </strong>A national retrospective cross-sectional study based on data from the Swedish Register of Palliative Care. Patients ≥ 18 years of age enrolled in specialized palliative home care with dates of death between 1 November 2015 and 31 October 2022 were included (n = 39,698). Descriptive statistics were used.</p><p><strong>Results: </strong>Seven thousand three hundred eighty-three patients (18.6%), approximately 1,000 per year, were transferred to inpatient care and died within seven days of arrival. A considerable proportion of these patients died within two days after admission. The majority (73.6%) were admitted to specialized palliative inpatient care units, 22.9% to non-specialized palliative inpatient care units and 3.5% to additional care units. Transferred patients had more frequent dyspnoea (30.9% vs. 23.2%, p < 0.001), anxiety (60.2% vs. 56.5%, p < 0.001) and presence of several simultaneous symptoms was significantly more common (27.0% vs. 24.8%, p 0.001).</p><p><strong>Conclusion: </strong>The results show that patients admitted to specialized palliative home care in Sweden are being transferred to inpatient care near death. A notable proportion of these patients dies within two days of admission. Common features, such as symptoms and symptom burden, can be observed in the patients transferred. The study highlights a phenomenon that may be experienced by patients, relatives and healthcare personnel as a significant event in a vulnerable situation. A deeper understanding of the underlying causes of these transfers is required to ascertain whether they are compatible with good palliative care and a dignified death.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11344375/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142057043","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":"Real-world data of anamorelin in advanced gastrointestinal cancer patients with cancer cachexia.","authors":"Ari Nishimura, Satoshi Hamauchi, Akifumi Notsu, Kunihiro Fushiki, Kotoe Oshima, Takahiro Tsushima, Takeshi Kawakami, Akiko Todaka, Tomoya Yokota, Hirofumi Yasui, Yusuke Onozawa, Kentaro Yamazaki","doi":"10.1186/s12904-024-01538-9","DOIUrl":"10.1186/s12904-024-01538-9","url":null,"abstract":"<p><strong>Background: </strong>Cancer cachexia is characterized by the loss of body weight (BW) and anorexia. Anamorelin (ANAM) is a selective ghrelin receptor agonist with appetite-enhancing anabolic action. The ONO-7643-05 trial demonstrated that ANAM increased lean body mass and improved anorexia in a Japanese population. However, the clinical outcomes of patients on ANAM have not yet been reported.</p><p><strong>Patients and methods: </strong>We investigated the clinical outcomes of patients with unresectable, advanced, or recurrent gastrointestinal cancer (colorectal, gastric, or pancreatic cancer) who were treated with ANAM between April 2017 and August 2022. Cachexia was defined as the presence of anorexia and a loss of ≥ 5% of BW within 6 months. To evaluate the response to ANAM, the patients who had discontinued ANAM within 3 weeks were excluded. Response to ANAM was defined as maintenance of or increase in BW and improved appetite from baseline at every 3-week evaluation. We also collected data on the reasons for the discontinuation of ANAM and the correlation between clinical factors and ANAM response. Safety analysis of ANAM was performed for all patients who received ANAM.</p><p><strong>Results: </strong>Seventy-four patients were included in this study (49 males and 25 females), with a median age of 67.1 years (range, 36-83). The primary tumors were colorectal cancer in 27 (36.5%), gastric cancer in 20 (27.0%), and pancreatic cancer in 27 (36.5%). The Eastern Cooperative Oncology Group performance status was 0 in 10 (13.5%), 1 in 44 (59.5%), and ≥ 2 in 20 (27.0%). The number of previous chemotherapy regimens was 0 in 20 (27.0%), 1 in 22 (29.7%), and ≥ 2 in 32 (43.2%). ANAM was discontinued within 3 weeks in 28 patients for the following reasons: low-grade (grade 1 or 2) adverse events in 15 patients, ileus in three, grade 3 fatigue in one, progressive disease in one, censored follow-up in six, and unknown reasons in three. The proportion of ANAM responders was 63.6% (95% confidence interval, 47.8-77.6%). Among baseline characteristics, age ≥ 75 attenuated the ANAM response (p = 0.03). ANAM responders showed better disease control with chemotherapy than non-responders (75.0% vs. 37.5%, p = 0.02).</p><p><strong>Conclusions: </strong>ANAM may improve the outcomes of patients with gastrointestinal cancer cachexia in clinical practice.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11344333/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142057044","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}
India Tunnard, Katherine E Sleeman, Andy Bradshaw, Anna E Bone, Catherine J Evans
{"title":"The influence of care home registration type and size on senior care leader's confidence to provide palliative and end-of-life care: an explanatory sequential mixed methods study.","authors":"India Tunnard, Katherine E Sleeman, Andy Bradshaw, Anna E Bone, Catherine J Evans","doi":"10.1186/s12904-024-01525-0","DOIUrl":"10.1186/s12904-024-01525-0","url":null,"abstract":"<p><strong>Background: </strong>Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care.</p><p><strong>Aim: </strong>To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care.</p><p><strong>Design: </strong>An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration.</p><p><strong>Setting/participants: </strong>UK care home senior care leaders, purposively sampled by registration type, size and geographical location.</p><p><strong>Results: </strong>The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59-4.97, p = 0.33; large - aOR 0.65, 95% CI 0.18-2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance.</p><p><strong>Conclusion: </strong>Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11340158/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142037445","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}
Tara Delamere, Joanne Balfe, Lorna K Fraser, Greg Sheaf, Samantha Smith
{"title":"Defining and quantifying population-level need for children's palliative care: findings from a rapid scoping review.","authors":"Tara Delamere, Joanne Balfe, Lorna K Fraser, Greg Sheaf, Samantha Smith","doi":"10.1186/s12904-024-01539-8","DOIUrl":"10.1186/s12904-024-01539-8","url":null,"abstract":"<p><strong>Background: </strong>The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and future CPC need, but quantifying need is hampered by challenges in defining the population in need, and by limited available data. The objective of this paper is to summarise how population-level CPC need is defined, and quantified, in the literature.</p><p><strong>Methods: </strong>Scoping review performed in line with Joanna Briggs Institute methodology for scoping reviews and PRISMA-ScR guidelines. Six online databases (CINAHL, Cochrane Library, EMBASE, Medline, PsycINFO, and Web of Science), and grey literature, were searched.</p><p><strong>Inclusion criteria: </strong>literature published in English; 2008-2023 (Oct); including children aged 0-19 years; focused on defining and/or quantifying population-level need for palliative care.</p><p><strong>Results: </strong>Three thousand five hundred seventy-eight titles and abstracts initially reviewed, of which, 176 full-text studies were assessed for eligibility. Overall, 51 met the inclusion criteria for this scoping review. No universal agreement identified on how CPC need was defined in population-level policy and planning discussions. In practice, four key definitions of CPC need were found to be commonly applied in quantifying population-level need: (1) ACT/RCPCH (Association for Children with Life-Threatening or Terminal Conditions and their Families, and the Royal College of Paediatrics and Child Health) groups; (2) The 'Directory' of Life-Limiting Conditions; (3) 'List of Life-Limiting Conditions'; and (4) 'Complex Chronic Conditions'. In most cases, variations in data availability drove the methods used to quantify population-level CPC need and only a small proportion of articles incorporated measures of complexity of CPC need.</p><p><strong>Conclusion: </strong>Overall, greater consistency in how CPC need is defined for policy and planning at a population-level is important, but with sufficient flexibility to allow for regional variations in epidemiology, demographics, and service availability. Improvements in routine data collection of a wide range of care complexity factors could facilitate estimation of population-level CPC need and ensure greater alignment with how need for CPC is defined at the individual-level in the clinical setting.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11340184/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142037444","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":"Advantages, barriers, and cues to advance care planning engagement in elderly patients with cancer and family members in Southern Thailand: a qualitative study.","authors":"Supakorn Sripaew, Sawitri Assanangkornchai, Pawita Limsomwong, Rungarun Kittichet, Polathep Vichitkunakorn","doi":"10.1186/s12904-024-01536-x","DOIUrl":"10.1186/s12904-024-01536-x","url":null,"abstract":"<p><strong>Background: </strong>Older cancer patients are vulnerable to poorer health outcomes during cancer treatment. Although the Thai elderly had their own preferences towards future medical care and advance care planning (ACP) could help cancer patients make informed decisions, Thai physicians report a low ACP engagement rate. Thus, this study aimed to explore the perceptions of older cancer patients and their families towards ACP engagement.</p><p><strong>Method: </strong>We used a qualitative approach to explore the perceptions of non-haematological cancer patients aged ≥ 60 years old and their primary caregivers. The study was conducted at the Oncology Radiotherapy Referral Center, Songklagarind Hospital in Southern Thailand. Semi-structured in-depth interviews were conducted with the patients and their caregivers. Thematic analysis was used to identify and analyze recurring patterns and themes of perceptions regarding ACP engagement within the interview transcripts.</p><p><strong>Results: </strong>Among the 138 families approached, 32 interviews were conducted. Three themes were found: (1) Advantageous opportunity: the patients believed ACP would help them realize their life values, and ensure that their preference would be respected; (2) contemplation and barriers to ACP: ACP is unfamiliar and unnecessary, might have low utility, worry patients and family members, take away optimism, would not be a proper activity for the patient at the current health situation; and (3) Cues for ACP initiation: perceived conformity with one's religion, awareness of the current cancer state, having multiple comorbidity or experience suffering related with medical care, wishing not to burden family, having close family members, and trust in physicians.</p><p><strong>Conclusion: </strong>ACP engagement could be hindered or promoted by perceptions of older patients and/ or their family members, as well as the communication skills of the care providers. Care professionals who aim to initiate ACP should minimize the potential barriers, make the ACP benefits salient, and watch for cues indicating a propitious time to start the ACP conversation.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11337743/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142009770","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":"Pattern of admissions and needs assessment for palliative care services among in-patients in a tertiary health facility in South-Western Nigeria.","authors":"Babatunde Akodu, Olufunmilayo Olokodana-Adesalu, Moninuola Ojikutu, Ann Ogbenna, Taiwo Agunbiade, Nwando Nwosa, Ashti-Doobay Persaud, Matthew Caputo, Denise Drane, Charlesnika Evans, Adeboye Ogunseitan, Joshua Hauser","doi":"10.1186/s12904-024-01537-w","DOIUrl":"10.1186/s12904-024-01537-w","url":null,"abstract":"<p><strong>Background: </strong>Palliative care evolution focuses on education and medication accessibility. As little as 12% of palliative care needs are met. Assessment of the domains of Palliative care and patients' and families' experience are essential in life-limiting conditions. The Lagos University Teaching Hospital (LUTH), have the National Cancer Centre without offering palliative care services.</p><p><strong>Aim: </strong>The aim was to examine pattern of admissions and needs assessment for palliative services among patients admitted into LUTH wards.</p><p><strong>Materials and method: </strong>Responses were entered into a data sheet inputted into Epi info version 7.2. Descriptive characteristics of the participants were presented as frequencies and percentages for age, sex, pattern of disease, domains of Palliative care, Advance care Plan, Preparation for home care, death and Education about the illness and category of medical conditions (palliative and non-palliative conditions). Together for Short Lives (TfSL) tool was used to categorize respondents' conditions into Palliative and Non-palliative conditions. Chi-square test was used to determine association between independent variables (pattern of diagnoses, stage of disease, advanced care plan, preparation for home care/ death and education on illness) and dependent variables (category of medical condition). Chi-square test was also used to explore the association between specialty of the managing doctor (independent variable) and Advance care plan (dependent variable). The level of statistical significance was P-value < 0.05.</p><p><strong>Results: </strong>80.6% of the respondents had palliative care conditions, 83.7% had family members as their caregiver while 13.2% of the participants had no caregiver and 65.9% had no advance care plan. There was no preparation for home care or death in 72.1%, 70.5% had education about their illness, and 68.2% were in the advanced stage of their disease. Participants attending the surgery non-trauma unit (51.6%) were more likely to have advance care plans. Adults were more likely to have palliative care conditions (79.8%) compared to children (20.2%), and was statistically significant.</p><p><strong>Conclusion: </strong>Majority of the participants need palliative care services but are unavailable and unmet and the most predominant condition was cancer. Majority had no advance care plan or preparation for home care or death despite having advanced stage of the disease. This survey emphasized the need for symptom management, communication and provision of support.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11331655/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142005644","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}
Emma J Chapman, Carole A Paley, Simon Pini, Lucy E Ziegler
{"title":"Updating a conceptual model of effective symptom management in palliative care to include patient and carer perspective: a qualitative study.","authors":"Emma J Chapman, Carole A Paley, Simon Pini, Lucy E Ziegler","doi":"10.1186/s12904-024-01544-x","DOIUrl":"10.1186/s12904-024-01544-x","url":null,"abstract":"<p><strong>Background: </strong>A conceptual model of effective symptom management was previously developed from interviews with multidisciplinary healthcare professionals (HCP) working in English hospices. Here we aimed to answer the question; does a HCP data-derived model represent the experience of patients and carers of people with advanced cancer?</p><p><strong>Methods: </strong>Semi-structured interviews were undertaken with six patients with advanced cancer and six carers to gain an in-depth understanding of their experience of symptom management. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation. Inductive framework analysis was used to align data with themes in the existing model. A deductive approach was also used to identify new themes.</p><p><strong>Results: </strong>The experience of patients and carers aligned with key steps of engagement, decision making, partnership and delivery in the HCP-based model. The data aligned with 18 of 23 themes. These were; Role definition and boundaries, Multidisciplinary team decision making, Availability of services/staff, Clinician-Patient relationship/rapport, Patient preferences, Patient characteristics, Quality of life versus treatment need, Staff time/burden, Psychological support -informal, Appropriate understanding, expectations, acceptance and goals- patients, Appropriate understanding, expectations, acceptance and goals-HCPs, Appropriate understanding, expectations, acceptance and goals- family friends, carers, Professional, service and referral factors, Continuity of care, Multidisciplinary team working, Palliative care philosophy and culture, Physical environment and facilities, Referral process and delays. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and COVID-19. Constructs that did not align were Experience (of staff), Training (of staff), Guidelines and evidence, Psychological support (for staff) and Formal psychological support (for patients).</p><p><strong>Conclusions: </strong>A healthcare professional-based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Additional domains were identified. We make four recommendations for change arising from this research. Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles; improved access to communication skills training for staff and review of patient communication needs. Further research should explore the symptom management experience of those living alone and how these people can be better supported.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11331639/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142005645","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}
Amara Callistus Nwosu, Sarah Stanley, Catriona R Mayland, Stephen Mason, Alexandra McDougall, John E Ellershaw
{"title":"Non-invasive technology to assess hydration status in advanced cancer to explore relationships between fluid status and symptoms: an observational study using bioelectrical impedance analysis.","authors":"Amara Callistus Nwosu, Sarah Stanley, Catriona R Mayland, Stephen Mason, Alexandra McDougall, John E Ellershaw","doi":"10.1186/s12904-024-01542-z","DOIUrl":"10.1186/s12904-024-01542-z","url":null,"abstract":"<p><strong>Background: </strong>Oral fluid intake decreases in advanced cancer in the dying phase of illness. There is inadequate evidence to support the assessment, and management, of hydration in the dying. Bioelectrical impedance analysis (BIA) is a body composition assessment tool. BIA has the potential to inform clinal management in advanced cancer, by examining the relationships between hydration status and clinical variables.</p><p><strong>Aim: </strong>BIA was used to determine the association between hydration status, symptoms, clinical signs, quality-of-life and survival in advanced cancer, including those who are dying (i.e. in the last week of life).</p><p><strong>Materials and methods: </strong>We conducted a prospective observational study of people with advanced cancer in three centres. Advance consent methodology was used to conduct hydration assessments in the dying. Total body water was estimated using the BIA Impedance index (Height - H (m)<sup>2</sup> /Resistance - R (Ohms)). Backward regression was used to identify factors (physical signs, symptoms, quality of life) that predicted H<sup>2</sup>/R. Participants in the last 7 days of life were further assessed with BIA to assess hydration changes, and its relationship with clinical outcomes.</p><p><strong>Results: </strong>One hundred and twenty-five people participated (males n = 74 (59.2%), females, n = 51 (40.8%)). We used backward regression analysis to describe a statistical model to predict hydration status in advanced cancer. The model demonstrated that 'less hydration' (lower H<sup>2</sup>/R) was associated with female sex (Beta = -0.39, p < 0.001), increased appetite (Beta = -0.12, p = 0.09), increased dehydration assessment scale score (dry mouth, dry axilla, sunken eyes - Beta = -0.19, p = 0.006), and increased breathlessness (Beta = -0.15, p = 0.03). 'More hydration' (higher H<sup>2</sup>/R) was associated with oedema (Beta = 0.49, p < 0.001). In dying participants (n = 18, 14.4%), hydration status (H<sup>2</sup>/R) was not significantly different compared to their baseline measurements (n = 18, M = 49.6, SD = 16.0 vs. M = 51.0, SD = 12.1; t(17) = 0.64, p = 0.53) and was not significantly associated with agitation (r<sub>s</sub> = -0.85, p = 0.74), pain (r<sub>s</sub> = 0.31, p = 0.23) or respiratory tract secretions (r<sub>s</sub> = -0.34, p = 0.19).</p><p><strong>Conclusions: </strong>This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. Our data demonstrates the feasibility of using an advance consent method to conduct research in dying people. This method can potentially improve the evidence base (and hence, quality of care) for the dying. Future BIA research can involve hydration assessment of cancers (according to type and stage) and associated variables (e.g., stage of illness, ethnicity and gender). Further work can use BIA to identify clinically relevant outcomes for hydration ","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11331739/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142005643","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}
Filipa Baptista Peixoto Befecadu, Maria Gonçalves, Cláudia Fernandes, Carlos Laranjeira, Maria Dos Anjos Dixe, Ana Querido, Sophie Pautex, Philip J Larkin, Gora Da Rocha Rodrigues
{"title":"The experience of hope in dyads living with advanced chronic illness in Portugal: a longitudinal mixed-methods study.","authors":"Filipa Baptista Peixoto Befecadu, Maria Gonçalves, Cláudia Fernandes, Carlos Laranjeira, Maria Dos Anjos Dixe, Ana Querido, Sophie Pautex, Philip J Larkin, Gora Da Rocha Rodrigues","doi":"10.1186/s12904-024-01528-x","DOIUrl":"10.1186/s12904-024-01528-x","url":null,"abstract":"<p><strong>Background: </strong>Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time.</p><p><strong>Methods: </strong>We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio.</p><p><strong>Results: </strong>Dyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included \"Living one day at the time,\" \"Having inner force/strength,\" and \"Maintaining good health.\" Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one.</p><p><strong>Conclusions: </strong>The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11325565/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141983668","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":"Physicians' experiences and perceptions about withholding and withdrawal life-sustaining treatment in Chiang Mai University Hospital: a cross-sectional study.","authors":"Nattanit Ketchaikosol, Kanokporn Pinyopornpanish, Chaisiri Angkurawaranon, Nisachol Dejkriengkraikul, Lalita Chutarattanakul","doi":"10.1186/s12904-024-01511-6","DOIUrl":"10.1186/s12904-024-01511-6","url":null,"abstract":"<p><strong>Background: </strong>Withholding or withdrawing life-sustaining treatment in end-of-life patients is a challenging ethical issue faced by physicians. Understanding physicians' experiences and factors influencing their decisions can lead to improvement in end-of-life care.</p><p><strong>Objectives: </strong>To investigate the experiences of Thai physicians when making decisions regarding the withholding or withdrawal of life-sustaining treatments in end-of-life situations. Additionally, the study aims to assess the consensus among physicians regarding the factors that influence these decisions and to explore the influence of families or surrogates on the decision-making process of physicians, utilizing case-based surveys.</p><p><strong>Methods: </strong>A web-based survey was conducted among physicians practicing in Chiang Mai University Hospital (June - October 2022).</p><p><strong>Results: </strong>Among 251 physicians (response rate 38.3%), most of the respondents (60.6%) reported that they experienced withholding or withdrawal treatment in end-of-life patients. Factors that influence their decision-making include patient's preferences (100%), prognosis (93.4%), patients' quality of life (92.8%), treatment burden (89.5%), and families' request (87.5%). For a chronic disease with comatose condition, the majority of the physicians (47%) chose to continue treatments, including cardiopulmonary resuscitation (CPR). In contrast, only 2 physicians (0.8%) would do everything, in cases when families or surrogates insisted on stopping the treatment. This increased to 78.1% if the families insisted on continuing treatment.</p><p><strong>Conclusion: </strong>Withholding and withdrawal of life-sustaining treatments are common in Thailand. The key factors influencing their decision-making process included patient's preferences and medical conditions and families' requests. Effective communication and early engagement in advanced care planning between physicians, patients, and families empower them to align treatment choices with personal values.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11320918/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141976950","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}