The objectives of this study were to evaluate the psychometric properties of a palliative care self-efficacy instrument developed for intellectual and developmental disability (IDD) staff using Rasch analysis and assess the change in palliative care self-efficacy between 2 time points using Rasch analysis of stacked data.

Staff from 4 nonprofit IDD services organizations in a US Midwestern state (n = 98) answered 11 questions with Likert-style responses at baseline and 1-month follow-up post training. Rasch analysis was performed to examine rating scale structure, unidimensionality, local independence, overall model fit, person and item reliability and separation, targeting, individual item and personal fit, differential item functioning (DIF), and change in palliative care self-efficacy between 2 time points.

The rating scale structure improved when 5 response categories were collapsed to 3. With the revised 3 response categories, the instrument demonstrated good psychometric properties. Principal components analysis of Rasch residuals supported the assumption of unidimensionality. Model fit statistics indicated an excellent fit of the data to the Rasch model. The instrument demonstrated good person and item reliability and separation. Gender-related DIF was found in 1 item, and work tenure–related DIF in 3 items. Overall palliative care self-efficacy improved between 2 time points.

Rasch analysis allowed for a more thorough examination of this palliative care self-efficacy instrument than classical test theory and provided information on rating scale structure, targeting, DIF, and individual persons and items. These recommendations can improve this instrument for research and practical contexts.

Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This article sets out to describe clinical and cultural characteristics of pediatric end-of-life patients in a majority Jewish and Muslim country with religious and legal constraints around end-of-life care.

We conducted a retrospective chart review of 78 pediatric patients who died during a 5-year period and could potentially have utilized pediatric palliative care services.

Patients reflected a range of primary diagnoses, most commonly oncologic diseases and multisystem genetic disorders. Patients followed by the pediatric palliative care team had less invasive therapies, more pain management and advance directives, and more psychosocial support. Patients from different cultural and religious backgrounds had similar levels of pediatric palliative care team follow-up but certain differences in end-of-life care.

In a culturally and religiously conservative context that poses constraints on decision-making around end-of-life care, pediatric palliative care services are a feasible and important means of maximizing symptom relief, as well as emotional and spiritual support, for children at the end of life and their families.

This study aimed to investigate the association between professional characteristics and the prevalence of advance directives among palliative care professionals.

This is a descriptive cross-sectional study. A diverse sample of 327 healthcare professionals completed an online survey investigating demographic variables, length of time working in palliative care, post-graduate qualifications in palliative care, and development of their own advance directives.

The prevalence of advance directives among professionals working in palliative care was associated with factors such as higher academic qualifications, holding a post-graduate qualification in palliative care, and working in palliative care for a longer time. Furthermore, psychologists were most likely to have registered their own advance directives, compared with other healthcare professionals.

Post-graduate palliative care education and professional experience in this area appear to be important factors associated with palliative care professionals writing of their own advance directives. However, our study suggests that just being involved in or familiar with the context of palliative and end-of-life care does not guarantee that health professionals register their advance directives.

Preferences for end-of-life (EoL) care settings is of considerable interest for developing public health policy and EoL care strategies. Culture, the cause of illness, and background characteristics may impact preferences. The present study aimed to explore preferences for EoL care settings: homes, hospitals, and inpatient hospice units among the general healthy population in Israel. Possible associations between the setting preferences and socio-demographic characteristics were also examined.

A cross-sectional survey was conducted among 311 healthy adults who were recruited through a representative internet panel of the Israeli population using the Israeli census sampling method. The sex ratio was almost 1:1 with 158 women (50.8%) and 153 men (49.2%). All participants completed self-report measures using an online survey system. The questionnaires assessed sociodemographics and preferences for EoL care settings.

This survey revealed that 52.1% of the participants expressed preference for being cared for at home rather than in an inpatient hospice unit, 40.8% expressed being cared for at home rather than in a hospital, while 36.7% had no preference regarding being cared for in hospital or in a hospice unit. Among the socio-demographic variables, only age and gender were found to be significantly associated with preferences for EoL care settings.

The present study highlights the need to be cautious when regarding home as the preferred EoL care setting, as some individuals declared that they would prefer EoL hospice/hospital care. Age and gender should be considered when discussing and tailoring strategies regarding EoL preferences.

This study investigates the views on death among cancer patients in Japan and examines how these views are related to age, sex, and physical condition. We also investigate how these views are related to where patients would like to spend their final days and whether or not they would like to be told how long they have left to live.

We targeted 450 cancer patients receiving outpatient treatment in the radiology department at the University of Tokyo Hospital. We used the Death Attitudes Inventory (DAI) developed by Hirai to measure attitudes about death.

Of the 450 patients approached, we received responses from 310 (69% collection rate). The results of the t test and one-way ANOVA showed that, in terms of “death anxiety/fear,” the under-65 group (17.73 ± 6.69) scored significantly higher than the 65-and-over group (15.43 ± 7.69, t = 2.685, df = 280, p < 0.01); the group with KPS scores 70 or above (16.88 ± 7.21) scored higher than the group with KPS scores below 70 (12.73 ± 7.09, t = 2.168, df = 280, p = 0.03); and no significant difference was found for sex, metastasis, or treatment stage.

Our results demonstrate that, although views on death among cancer patients may differ according to sex, age, and physical condition, taking these factors into account when understanding such views can be useful in predicting where patients may wish to spend their final days.

This study reports the evaluation of the original 31-item Quality of Dying and Death Questionnaire (QODD) using a sample of caregivers of recently deceased older adults in China, and the validation of a shortened version (QODD-C) derived from the original scale.

The translation was performed using a forward and back method. The full scale was tested with 212 caregivers of decedents in four regions of China. Confirmatory factor analysis tested the model fit between the full Chinese version and the original conceptual model and generated the QODD-C. The psychometric analysis was performed to evaluate the QODD-C's internal consistency, content validity, construct validity, and discriminant validity.

A five-domain, 18-item QODD-C was identified with excellent internal consistency reliability (Cronbach's α = 0.933; split-half Pearson's value = 0.855). The QODD-C total score was significantly associated with constructs related to five domains. The caregiver's relationship with the decedent, the decedent's age at death, death reason, and death place was significantly associated with the QODD-C total score.

The QODD-C is a valid and reliable instrument for assessing the quality of dying and death among the Chinese populations.

Patients with terminal cancer receiving home palliative care present differential healthcare utilization trajectories before death. It remains unclear which situational elements influence these trajectories among disparate patient groups. The aim of this study was to compare situational influences on “persistently high” and “low stable” trajectories of healthcare utilization in patients who received palliative care support at home.

Bereaved family caregivers were recruited from our prior quantitative study investigating healthcare utilization trajectories in oncology patients on home-based palliative care. In-depth interviews were conducted with 30 family caregivers. Data were analyzed using thematic analysis.

Analysis of data uncovered how the 2 utilization trajectories were influenced by the interplay of 1 or more of 4 situational elements. Perceived symptom control in patients, influenced by their determination to die at home, shapes the susceptibility to situational contingencies, resulting in differential utilization trajectories. Caregivers’ mental readiness in dealing with unexpected circumstances has a significant impact on the overall manageability of care, ultimately affecting decisions related to healthcare utilization. The concordance between symptom needs and scope of homecare services in a given situation proves to be an important determinant. Lastly, perceived accessibility to informal support in times of need acts as a contextual reinforcement, either preventing or precipitating decisions regarding healthcare utilizations.

Our findings hold important implications for the provision of homecare services, in particular, the need for comprehensive assessment of end-of-life wishes during homecare enrolment and strengthening psychological preparedness of caregivers. Expansion of home-based clinical interventions tailored to high utilizers, and funding for temporary in-home respite should be considered to optimally manage potentially preventable acute healthcare utilization.

Substance use disorders (SUDs) are frequently encountered in hospice palliative care (HPC) and pose substantial quality-of-life issues for patients. However, most HPC physicians do not directly treat their patients’ SUDs due to several institutional and personal barriers. This review will expand upon arguments for the integration of SUD treatment into HPC, will elucidate challenges for HPC providers, and will provide recommendations that address these challenges.

A thorough review of the literature was conducted. Arguments for the treatment of SUDs and recommendations for physicians have been synthesized and expanded upon.

Treating SUD in HPC has the potential to improve adherence to care, access to social support, and outcomes for pain, mental health, and physical health. Barriers to SUD treatment in HPC include difficulties with accurate assessment, insufficient training, attitudes and stigma, and compromised pain management regimens. Recommendations for physicians and training environments to address these challenges include developing familiarity with standardized SUD assessment tools and pain management practice guidelines, creating and disseminating visual campaigns to combat stigma, including SUD assessment and intervention as fellowship competencies, and obtaining additional training in psychosocial interventions.

By following these recommendations, HPC physicians can improve their competence and confidence in working with individuals with SUDs, which will help meet the pressing needs of this population.

It has been suggested that psychosocial factors are related to survival time of inpatients with cancer. However, there are not many studies examining the relationship between spiritual well-being (SWB) and survival time among countries. This study investigated the relationship between SWB and survival time among three East Asian countries.

This international multicenter cohort study is a secondary analysis involving newly admitted inpatients with advanced cancer in palliative care units in Japan, South Korea, and Taiwan. SWB was measured using the Integrated Palliative Outcome Scale (IPOS) at admission. We performed multivariate analysis using the Cox proportional hazards model to identify independent prognostic factors.

A total of 2,638 patients treated at 37 palliative care units from January 2017 to September 2018 were analyzed. The median survival time was 18.0 days (95% confidence interval [CI] 16.5–19.5) in Japan, 23.0 days (95% CI 19.9–26.1) in Korea, and 15.0 days (95% CI 13.0–17.0) in Taiwan. SWB was a significant factor correlated with survival in Taiwan (hazard ratio [HR] 1.27; 95% CI 1.01–1.59; p = 0.04), while it was insignificant in Japan (HR 1.10; 95% CI 1.00–1.22; p = 0.06), and Korea (HR 1.02; 95% CI 0.77–1.35; p = 0.89).

SWB on admission was associated with survival in patients with advanced cancer in Taiwan but not Japan or Korea. The findings suggest the possibility of a positive relationship between spiritual care and survival time in patients with far advanced cancer.

Meeting the needs of people accessing healthcare from ethnic minority (EM) groups is of great importance. An insight into their experience is needed to improve healthcare providers’ ability to align their support with the perspectives and needs of families. This review provides insight into how families from EM backgrounds experience children’s palliative care (CPC) by answering the question, “What are the experiences of EM families of children’s palliative care across developed countries?”

A systematic search of articles from 6 databases (Scopus, Medline, Web of Science, APA PsycINFO, CINAHL, and Global Health) with no limit to the date of publication. The search was conducted twice, first in June 2022 and again in December 2022. The extracted data were analyzed using thematic synthesis.

Eight studies explored the experiences of families of EM in different high-income countries. Four themes were identified: unmet needs leading to communication gaps, accessibility of hospital services and resources, the attitude of healthcare workers, and the need for survival as an immigrant.

Overall, the study shows EM families rely heavily on healthcare professionals’ cultural competence in delivering palliative care for their children. There is an interplay between EM families’ culture, spiritual ties, communication, and social needs from this review. Understanding how to bridge the communication gap and how families use their culture, faith, and spirituality to manage their pain, and grief and improve their quality of life would be extremely beneficial for healthcare practitioners in increasing their support to EM families accessing CPC.