Journal of Palliative Care最新文献

Objective: Patient-centered care is widely recognized as a crucial component of high-quality end-of-life care. As this approach remains limited in China, this study sought to develop quality measures specifically tailored to end-of-life care within the country. Methods: Initial indicators were established through a comprehensive review of existing measures. Using the modified Delphi Method, a two-round survey with experts (n = 14) was applied to evaluate the importance of each item. Results: The authoritative coefficient of two rounds of expert consultation was 0.86 and 0.87, and the Kendall coefficient of concordance for the two rounds was 0.232 and 0.270 (P < 0.001), respectively, demonstrating an acceptable consensus among the experts. As a result, 31 key quality indicators were identified and deemed important. Conclusions: This study developed a scale for patient-centered end-of-life care quality measurement in China, consisting of six dimensions and 31 indicators. This scale lays a solid foundation for quality improvement initiatives and future development of patient-centered end-of-life care.

ObjectiveCAPACITI (Community Access to PAlliative Care via Interprofessional Teams Improvement) is a virtual training program that teaches primary care providers how to incorporate an early palliative approach to care in practice. Building this capacity can help primary care providers better meet the needs of their seriously ill patients; however, there has been limited in-depth study as to the added benefits of active facilitation in on-line education. We completed a qualitative inquiry with CAPACITI participants to explore perceived differences in self-directed and facilitated e-learning to understand how these modalities contribute to change in practice.MethodsWe completed a qualitative analysis of semi-structured focus groups with primary care teams that participated in CAPACITI. This study was part of a cluster randomized controlled trial where teams were randomized to self-directed or facilitated modalities for each of the three CAPACITI modules. We followed a qualitative descriptive design, using a constant comparative approach to determine emergent themes to understand participant experience and preference in learning modality.ResultsWe conducted 63 focus groups throughout the trial, representing 42 unique teams, about a quarter of which had experienced both learning modalities at the time of the focus group. Qualitative analysis revealed three main themes: changes in thinking (ie identifying patients early in the illness trajectory), change in behavior (ie increased collaboration), and preference in learning modality and perceived benefits. Interestingly, we found no overwhelming preference in learning modality.ConclusionsSelf-directed and facilitated learning modalities were both perceived as effective in promoting changes in thinking and behavior among primary care providers across diverse care settings. Future studies should further explore the use of tailored facilitation such as simulated patient encounters and innovative coaching strategies to optimally promote behavior change in virtual palliative care education.

ObjectiveIdentifying research priorities is very important for palliative and end-of-life care to ensure research is focused on evidence gaps. This project aimed to identify and prioritise palliative and end-of-life care research areas within the West Midlands region in United Kingdom (UK).MethodsA modified Delphi technique approach was used with palliative care stakeholders. The first round was item generation via rapid interviews. Data were analysed using content analysis and all the items were grouped into main categories. For round two, an online survey was conducted to present all the items from round one, and stakeholders were asked to rate the priority of items on a Likert-type scale (1 = not a priority to 7 = essential priority). Items that achieved consensus in round two were presented to the third round, where stakeholders ranked them in descending order.ResultsWe completed and analysed 56 rapid interviews which resulted in 158 research items under 15 categories. The research items were rated by 30 stakeholders and seven items which reached consensus were subsequently ranked in order by 45 stakeholders. The highest ranked item was 'Integrated care systems to prevent crisis', followed by three research items related to 'equity' in palliative care.ConclusionsOur research priorities, although unique for our region, mirror previously research priorities from other regions and countries. This suggests issues of integration and equity in palliative and end-of-life care remain unresolved, despite ongoing initiatives and research to address these issues.

ObjectiveMotor neuron disease (MND) is a progressive neurological disorder with no known cure that damages motor neurons. The purpose of this analysis is to examine the place of death for MND patients in the United States during the coronavirus disease 2019 (COVID-19) pandemic and to investigate the extent of specific comorbidities.MethodsWe obtained death certificate and associated comorbidities data for all U.S. MND deaths from 2018 to 2021 and conducted a population-based cross-sectional analysis of the deaths pre-COVID-19 (2018-2019) and during COVID-19 (2020-2021). We hypothesized that place of death and comorbidities associated with place of death for MND patients in the United States were altered during the COVID-19 pandemic in comparison to the 2 years period before the pandemic.ResultsWe analyzed 30 066 MND deaths (14 562 pre-COVID-19 and 15 504 during COVID-19) aged 20 years and older. During COVID-19, MND deaths at home increased (54.4% vs 45.5% pre-COVID). Hispanic individuals had an increased likelihood of dying at home compared to a nursing home or hospice (OR = 1.57, 95%CI: 1.22-2.02), but a decreased likelihood compared to a hospital (OR = 0.61, 95% CI: 0.51-0.72). Among the top comorbidities listed, there was a 27.8% increase in diabetes mellitus and a 20.2% increase in essential hypertension during COVID-19. During COVID-19, diabetes mellitus was more commonly reported as a comorbidity for deaths occurring in hospitals (OR = 1.40, 95%CI: 1.03-1.89) or at home (OR = 1.26, 95%CI: 1.03-1.55), while essential hypertension was more commonly reported with deaths at home (OR = 1.17, 95%CI: 1.01-1.36).ConclusionOur analysis showed an increase in at-home MND deaths as well as certain comorbidities during the COVID-19 pandemic, suggesting MND patients had a higher likelihood of death from non-COVID-19 comorbidities.

Objective: This study aimed to show evidence from existing literature about the experiences and challenges managed by informal caregivers of older adults in home-based palliative care. Methods: A scoping review was conducted using Arksey and O'Malley's framework. Eight electronic databases, Academic Search Complete, AgeLine, APAPsycArticles, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete, Global Health, Medline, PsycINFO, Social Work Abstracts, and Web of Science from the EBSCO platform were searched. After full text review, data were extracted and charted. Major themes were established following thematic content analysis. Results: A total of 3859 records were yielded through the electronic database search. After duplicate removal and screening of titles/abstracts and full-texts, a total of 11 studies were included. From these 11 studies, themes were identified: (1) exhaustion and health deterioration, (2) the strain of multifaceted obligations, (3) insufficient medical support and training for caregivers, (4) lack of respite care, and (5) financial strain in caregiving. There is a need for large-scale evaluations of interventions and informal caregivers should be engaged in this process. Conclusions: There is a need to recognize and support a wide array of informal caregivers socially and financially to help them obtain more services and resources. Policymakers need to make more accessible resources and the existing benefits more customized to the unique needs of the informal caregivers of home-based palliative patients.

ObjectiveWith the growing need to integrate palliative care into healthcare systems, nurses in hospital settings often provide care for patients with life-limiting conditions, many of whom lack formal education in palliative care. This study aimed to assess knowledge, attitude, and self-competence of nurses working in hospital settings regarding palliative care.MethodsThis study evaluated 129 hospital nurses in Colorado. It used the Palliative Care Quiz for Nursing, the Frommelt Attitude Toward Care of the Dying Scale, and the Palliative Care Nursing Self-Competency Scale to assess their knowledge, attitudes, and perceived self-competence.ResultsThe mean scores were knowledge, 11.69 (SD = 2.8); attitudes, 123.35 (SD = 11.44); and self-competence, 167.5 (SD = 31.5). The lowest scores were in psychosocial and spiritual care. Nurses generally feel competent; however, they often lack confidence in addressing patients' social and spiritual needs. They experienced unease when discussing death and exhibited paternalistic attitudes. Significant differences were found in educational background, nursing experience, personal caregiving experience, and practice setting. Positive correlations exist between attitudes, knowledge, and self-competence, indicating that greater knowledge and competence were associated with better attitudes toward end-of-life care.ConclusionsThis study highlights the need for educational interventions focusing on communication skills, pain management, psychological and spiritual care, and patient-centered care to improve nurses' competence in delivering high-quality palliative care in hospital settings.

Objectives: Inequities in access to physical health care for those with mental health conditions and substance use disorders are well recognised, and evidence of unequal access to palliative care is emerging. This study uses complete national data to examine the place of death for those with specific mental health conditions in Aotearoa New Zealand. Methods: Mortality data between 2013 and 2018 was linked to secondary mental health service usage. Place and cause of death were compared between those with diagnoses of bipolar affective disorder or schizophrenia and those without, stratified by ethnicity. Results: A cohort of 498,293 individuals was identified. People diagnosed with bipolar disorder and schizophrenia had different patterns of cause and place of death from other New Zealanders. This group was less likely to die in hospices, even after adjustment for differences in cause of death and age (adjusted OR 0.59, CI 0.52-0.68). Patterns of place of death differed by ethnicity. Conclusions: Inequities in healthcare provision for those diagnosed with psychotic disorders continue at the end of life, with reduced access to hospice facilities. Further research is needed to understand the quality of healthcare provision and wishes of those with mental health conditions in end-of-life care.

Objectives: Antibiotic use in patients with advanced cancer at the end of life (EoL) is common but controversial, with limited evidence on its efficacy in improving symptoms. This study aimed to evaluate the prevalence of antibiotic use during the final 30 days of life in patients with advanced cancer and its impact on symptom improvement within a palliative care setting in Saudi Arabia. Methods: A retrospective cohort study was conducted in the palliative care department of King Fahad Medical City, Riyadh, Saudi Arabia. The study included all advanced cancer patients who received inpatient palliative care and died between January 2022 and March 2023. Medical records data were analyzed to assess infection-related symptoms, antibiotic use, and symptom improvement 3 days (D3) post-diagnosis. Results: A total of 220 patients were included, with a mean age of 61 ± 17 years and a mean palliative performance scale of 37%. Antibiotics were prescribed to 89% of patients, primarily empirically (82%). Piperacillin/tazobactam (53%) and meropenem (17%) were the most commonly used antibiotics. Symptom improvement at D3 was observed in 54% of symptomatic patients (n = 95). Improvements were significant for fever (42% to 15%, P < .001), pain (58% to 37%, P < .001), cough (16% to 7%, P = .004), and shortness of breath (32% to 20%, P = .003). The logistic regression model analysis identified no significant predictors of symptom improvement. Conclusion: Antibiotics are widely used EoL care for advanced cancer patients, but their impact on symptom improvement is modest. The findings underscore the need for judicious antibiotic use, guided by individualized care goals and interdisciplinary collaboration, to optimize symptom management while minimizing unnecessary interventions.

Objectives: It is common for relatives to feel uncertain about what to expect at the bedside of a dying loved one. The Centre for the Art of Dying Well together with clinical, academic and communications experts created a 'Deathbed Etiquette' guide offering information and reassurance to relatives. This study explores the views of practitioners with experience in end-of-life care on the guide and how it might be used. Methods: Three online focus groups and nine individual interviews were conducted with a purposive sample of 21 participants involved in end-of-life care. Participants were recruited through hospices and social media. Data were analysed using thematic analysis. Results: Discussions highlighted the importance of effective communication that normalises experiences of being by the bedside of a dying loved one. Tensions around the use of the words 'death' and 'dying' were identified. Most participants also expressed reservations about the title, with the word 'deathbed' found to be old-fashioned and the word 'etiquette' not capturing the varied experiences of being by the bedside. Overall, however, participants agreed that the guide is useful for 'mythbusting' death and dying. Conclusion: There is a need for communication resources that can support practitioners in having honest and compassionate conversations with relatives in end-of-life care. The 'Deathbed Etiquette' guide is a promising resource to support relatives and healthcare practitioners by providing them with suitable information and helpful phrases. More research is needed on how to implement the guide in healthcare settings.

Objectives: To assess the trends in palliative care consultation utilization and identify associated factors among older adults hospitalized with hip fractures in the United States between 2016 and 2020. Methods: We conducted a retrospective cohort study using data from the National Inpatient Sample from 2016 to 2020. The study included patients aged 65 and older admitted to hospital with a primary diagnosis of hip fracture. We identified palliative care consultations using ICD-10 code Z51.5. Multivariate logistic regression analyses were performed to identify predictors of palliative care utilization, adjusting for demographics, clinical variables, and hospital characteristics. Results: A total of 293,749 admissions for hip fractures were identified, of which 9546 (3.2%) had palliative care consultations. A consistent upward trend was seen in the proportion of patients receiving palliative care consultations across all fracture types. Patients of color (Black: odds ratio [OR] = 0.73, 95% confidence interval [CI]: 0.65-0.83; Hispanic: OR = 0.67, 95% CI: 0.60-0.75 compared to White), those in lower-income quartiles (lowest: OR = 0.81, 95% CI: 0.76-0.87 compared to highest), smaller hospital size (OR = 0.84, 95% CI: 0.79-0.89 compared to large), and rural hospital (OR = 0.63, 95% Cl: 0.59-0.68, compared to urban teaching) were associated with fewer palliative care consultations. Conclusion: The number of palliative care consultations during hip fracture hospital admission was low, although the proportion increased over time. Significant disparities were observed and further research should explore barriers to palliative care access and develop strategies to enhance its delivery across diverse healthcare settings.