BMC Palliative Care最新文献

Background: Studies have shown that needs and expectations concerning palliative and hospice care differ in relation to patients' diversity characteristics. Patients from minority groups may encounter various barriers that can prevent them from using or receiving appropriate, high-quality care. While corresponding measures and approaches exist that aim to address the diversity of patients, it is currently unclear, to what extent they are utilized by German palliative and hospice care facilities.

Methods: To examine the current state of sensitivity or responsiveness to diversity of German palliative and hospice care providers, a mixed-mode cross-sectional survey was conducted using a random sample (n = 1901) of German hospices, palliative care units in hospitals, outpatient hospice services, specialized palliative care teams (so-called 'SAPV teams'), and other service providers listed in the online guide of hospice and palliative care services of the German Association for Palliative Medicine (DGP).

Results: Among the respondents (n = 346, response rate = 18.2%), the majority perceived diversity responsiveness as a development that is gaining importance but did not necessarily consider addressing it in their facility. While a majority of facilities (56.9%) considered diversity in their mission statement, dedicated activities to promote diversity responsiveness - like diversity trainings for staff members (35.3%), designated diversity commissioners (4.6%), or dedicated internal working groups (4.3%) - were less common. Similarly, written materials and services depending strongly on communication were not generally available. Barriers to implementing such services were mostly related to organizational difficulties (31.8%), missing knowledge on how to implement corresponding measures (28.3%), and decision makers not being convinced of the necessity (25.7%). Furthermore, 25.1% of respondents reported lacking financial resources.

Conclusions: The surveyed palliative and hospice care facilities often did not address patient diversity sufficiently. Although a larger share of the respondents was generally aware of the need for diversity-sensitive care to improve patient orientation, corresponding structures and services were not commonly available. To address existing barriers, efforts to further raise awareness, as well as support measures to help facilities implement diversity-sensitive concepts are necessary.

Background: With increasing life expectancy and the growing burden of chronic diseases, healthcare systems are shifting from hospital-centered models to community- and home-based care. The use of home mechanical ventilators (HMVs) facilitates early discharge from hospital settings yet creates significant physical, psychological, and social burdens for caregivers. Identifying strategies to reduce ventilator dependency during palliative inpatient care may alleviate these challenges.

Methods: This retrospective, cross-sectional, descriptive study employed a quantitative approach with purposive sampling. The study included 75 bedridden patients who were transferred from intensive care units (ICUs) to palliative care services with a planned transition to home healthcare. A multidisciplinary rehabilitation program encompassing respiratory, physical, nutritional, and psychological interventions was systematically implemented in the palliative care unit. Data on the patients' functional and nutritional status, as well as pressure ulcer risk scores, were collected and analyzed to evaluate their association with successful weaning from HMV.

Results: Among the study population, 77.3% (n = 58) were successfully weaned off HMV. Significant predictors of ventilator weaning included higher Early Functional Ability (EFA) scores at admission, particularly in the sensorimotor and cognitive domains, as well as greater improvement in Karnofsky Performance Scores during the palliative stay. Improvements in nutritional and pressure ulcer risk scores were not significantly associated with ventilator weaning.

Conclusions: Multidisciplinary palliative care with targeted rehabilitation interventions may effectively reduce HMV dependency in patients transitioning from intensive care. A higher initial functional status and improvements in physical performance are key determinants of successful weaning, potentially lowering the burden on caregivers in home settings.

Background: We hypothesized that cancer patients, their family members, and cancer and palliative care practitioners were experiencing significant COVID-related stress and changes to cancer care and sought to characterize contributing factors.

Methods: We completed a mixed methods study to explore cancer care-related experiences during the COVID-19 pandemic of cancer patients, family members, and cancer and palliative care practitioners. Participants were recruited from an ongoing clinical trial.

Results: Patients were pursuing curative-intent surgeries for upper gastrointestinal cancers. Between October 2020 and July 2021, we collected 491 surveys from 181 cancer patients and 26 family caregivers and conducted 71 in-depth interviews with 48 cancer patients, 6 family caregivers, and 19 practitioners. Patient-reported quality-of-life measurements were not associated with a corresponding COVID surge. Patients and caregivers were generally satisfied with their care, trusted providers, and were often unaware of pandemic-related changes. In contrast, practitioners reported significant pandemic-related changes to cancer care delivery with associated practitioner anxiety, fatigue, and moral distress. All felt that visitor restrictions negatively impacted care.

Conclusions: Our data suggest that cancer patients coped well overall despite pandemic-related disruptions whereas cancer care clinicians experienced significant stress. These findings can inform future disaster-preparedness planning and policy-setting in institutions providing cancer care.

Context: Many individuals receiving specialist community palliative care experience unplanned hospitalisations or emergency department presentations. Understanding the reasons for this is essential to developing person-centred solutions.

Objectives: To identify the reasons for unplanned hospitalisations among people receiving specialist community palliative care.

Methods: A PROSPERO (CRD42024495016) registered scoping review reported according to the PRISMA extension for scoping reviews. A search of CINAHL, PubMed, Embase, and Scopus was undertaken for studies published from 2014 to 2025. Two reviewers completed title, abstract and full text screening and data extraction. Extracted reasons for hospitalisation were inductively coded using a content analysis approach, allowing for a descriptive summary of findings.

Results: Thirteen of the 2482 studies identified met the inclusion criteria. Six categories of hospitalisation reason were generated: (1) unrelieved symptoms (16 subcategories), (2) acute event (five subcategories) (3) signs of deterioration, (4) patient or carer distress/fatigue, (5) misunderstanding of the goals of care and (6) other/unknown. Of the sub-categories, dyspnoea (n = 11 studies, 85%), pain (n = 9, 69%), gastrointestinal symptoms (n = 9, 69%) and infection (n = 7, 54%) were the most frequently reported reasons for hospitalisation. Comparative studies (n = 5) of specialist versus usual or no palliative care showed mixed hospitalisation outcomes, with limited statistical detail.

Conclusion: This scoping review provides insight into patterns of hospitalisation, despite variability in data collection methods. This approach provides a foundation for developing targeted service improvements aimed at supporting individuals to stay at home for more extended periods in the last year of life.

Background: Brain metastases occur in 20%-40% of women with breast cancer, the most common malignancy in women worldwide. These patients frequently require palliative care to improve quality of life; however, their needs and experiences remain poorly characterised. This study explored attitudes, practices, and perceived barriers and facilitators related to palliative care among patients with brain metastasis from breast cancer in China.

Methods: Between October and December 2024, we conducted qualitative interviews with 16 women with brain metastases from breast cancer at a public hospital in Shenzhen, Guangdong Province, China. Participants were purposively sampled and interviewed face to face using a semi-structured, pilot-tested topic guide. Using directed content analysis, we analysed interview transcripts to identify concepts and key ideas within a deductive framework (attitudes, practices, barriers and facilitators). From these initial concepts, categories were inductively expanded and core themes were generated.

Results: Findings clustered into four domains: attitudes (goal incongruence among stakeholders; misunderstandings and stigma surrounding palliative care; evolving acceptance linked to perceived benefits); practices (managing neurological symptoms; maintaining cognitive function; optimising of pain management; coordination across family, community, and hospital settings); barriers (financial strain, limited understanding, cultural-familial norms); and facilitators (multidisciplinary care, family/community support, policy support).

Discussion: The findings highlight the need for improved communication and education to align expectations and enhance palliative care. Addressing the economic burden and cognitive decline, and strengthening professional team support, family and community engagement, and policy/organisational backing, may enhance palliative care delivery and outcomes. Future research should examine longitudinal shifts in awareness, evaluate transferability to other tumour types and sites via multicentre studies, and incorporate clinicians' and caregivers' perspectives to optimise symptom-control protocols and family-community-hospital coordination.

Background: Neonatal palliative care (NPC) represents a deeply emotional and ethically complex experience for families confronting the anticipated or actual loss of an infant. Although the clinical dimensions of NPC are increasingly acknowledged, there remains a lack of comprehensive synthesis regarding how parents perceive and construct meaning from this profoundly distressing journey.

Aim: This study aims to synthesize qualitative evidence on parental experiences during neonatal palliative care, with a focus on their emotional responses, decision-making processes, sources of support, and pathways to adaptation and meaning reconstruction.

Design: This study constituted a systematic review and meta-synthesis of qualitative research.

Data sources: A comprehensive search was conducted across nine electronic databases from their inception to November 2024, including PubMed, Web of Science, PsycINFO, Embase, CINAHL, CNKI, WanFang Data, VIP, and the Chinese Biomedical Literature Service System. Qualitative studies examining the experiences of parents who received neonatal palliative care were selected for synthesis.

Review methods: Two reviewers independently screened articles, extracted data, and appraised methodological quality using the Joanna Briggs Institute (JBI) checklist. Thematic synthesis was performed using synthesis techniques.

Results: Twelve studies met inclusion criteria. Five overarching themes were identified: parent-infant bonding, decision-making dilemmas, emotional struggles, the role of professional support, and the dynamics of support networks.

Conclusion: Parents' experiences in NPC are shaped by profound emotional struggles and the presence or absence of empathic, informative, and respectful communication. Peer and professional support systems play a critical role in facilitating emotional processing and post-traumatic growth. Enhancing communication training and integrating peer support programs into NICU settings may help meet the psychological needs of bereaved parents.