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To (1) identify clinical situations that may contribute to the experience of moral distress (MD) among professionals working with motor neuron disease (MND), (2) measure the occurrence and intensity of MD, and (3) explore associations with professional quality of life, turnover intention, and associated risk and/or protective factors.
Methods
A cross-sectional online survey was distributed to healthcare professionals working in MND services across Europe. Data were analyzed using descriptive and inferential statistics.
Results
In total, 230 responses from professionals across 17 European countries were analyzed from the international survey. And 67% of respondents indicated that MD resonated with their experience of working with MND. Those who considered leaving or changing their position due to the challenges associated with caring for this patient population were also more likely to report resonance with MD (χ2 = 7.772, p = 0.020). The intensity of MD was associated with reduced professional quality of life (burnout [β = 0.106, p < 0.05], and secondary traumatic stress [β = 2.881, p < 0.001]). A total of 24 clinical scenarios were identified as potential contributors to experiences of MD in this population. Across all professional groups, service-/organization-level factors were the most common and distressing barriers to providing effective MND care.
Significance of results
This study demonstrates that MD is experienced by healthcare professionals working with MND across Europe. MD was associated with reduced professional quality of life and increased intentions to leave or change positions, underscoring its potential implications for workforce retention and sustainability. The findings show that system/organization, patient/condition and family-level causes are the primary drivers of MD in this population. Future research should focus on evaluating the effectiveness of interventions designed to address these key drivers and mitigate the impact of MD among healthcare professionals working with MND.
To raise awareness of fertility preservation and counseling in palliative care and explore considerations for practice.
Methods
This case report describes the rapid decline and death of a 36-year-old man with astrocytoma. Despite early fertility discussions with the palliative care team, sudden clinical deterioration prevented semen collection prior to death. Following death, the spouse requested post-death sperm retrieval.
Results
Post-death sperm retrieval and cryopreservation were successfully completed within the viability window. To achieve this, urgent interdisciplinary coordination across palliative care, emergency medicine, reproductive specialists, and hospital legal and executive teams was required.
Significance of results
The case highlights the importance of early and ongoing fertility counseling for patients of reproductive age in palliative care. It demonstrates that clear pathways and coordinated systems can enable post-death sperm retrieval when aligned with patient and partner wishes. The development of evidence-based policies, training, and patient resources may reduce barriers and support clinicians to conduct sensitive, informed fertility discussions.
The intersection of medicine and Buddhist spiritual care in institutional end-of-life settings remains underexplored, particularly regarding post-death rituals. This qualitative study examines how Buddhist assisted chanting (zhunian, 助念) – a 24-hour continuous recitation of Amitabha Buddha’s name – functions as a model of holistic end-of-life care that addresses the spiritual, emotional, psychological, and relational dimensions of dying.
Methods
Semi-structured, in-person interviews were conducted with 34 participants (18 volunteers, 8 patients, and 8 family caregivers) at the Lotus Assisted Chanting Association housed within Cihai Hospital in Shenzhen, China, between June 22 and July 5, 2025. Interviews were conducted in Mandarin, transcribed, and anonymized. Coding was performed in NVivo N15 using an iterative thematic framework developed by open-coding an initial subset of transcripts.
Results
Three care frameworks emerged: (1) spiritual care, including adherence to end-of-life Buddhist practices, acceptance of death, belief in rebirth, and release of worldly attachments; (2) emotional and psychological care, encompassing companionship, peace and tranquility, and financial burden alleviation; and (3) reverse care, in which dying patients exercised personal agency and tended to those around them by resisting over-medicalization, expressing concern for caregivers, and transforming caregiving into an opportunity to practice filial piety and strengthen faith.
Significance of results
These findings characterize Buddhist assisted chanting as a reciprocal model of end-of-life care that extends care beyond the moment of death. Dying patients act as moral agents who tend to those around them, challenging the unidirectional caregiver–recipient model that underlies most palliative care research. These contributions show how culturally and spiritually informed palliative care prepares families for loss and shapes how patients find meaning at the end of life. More broadly, this study illustrates how Buddhist ritual frameworks can render dying as a humanistic and mindful process.
Colorectal cancer is a leading cause of cancer mortality in Australia, with many patients requiring complex end-of-life care. Evidence of potentially burdensome end-of-life care specific to colorectal cancer populations in hospital settings is limited. This study aimed to examine factors associated with indicators of potentially burdensome end-of-life care among people who died from colorectal cancer and received hospital-based care in New South Wales, Australia.
Methods
A retrospective population-based cohort study was conducted using linked data from the NSW Cancer Registry, hospital, and mortality records (2014–2019). Adults aged ≥20 years whose underlying cause of death was colorectal cancer and who were hospitalized in their final year of life were included. Multivariable logistic regression models examined associations between patient demographics and all indicators. Multinominal logistic regression examined predictors of a composite indicator comprising 4 indicators of potentially burdensome end-of-life care.
Results
Of 9,476 colorectal cancer decedents, 15.7% died in acute care. Within the last 30 days of life, 13.1% had >1 emergency department presentation, 9.2% had >1 hospital admission, and 3.1% had an intensive care unit admission. The composite indicator identified 71.3% of patients with no indicators, 18.9% with 1, and 9.8% with ≥2 indicators of potentially burdensome end-of-life care. Higher odds of potentially burdensome end-of-life care were observed among people who smoke, people living in rural locations, who had a lower socioeconomic status, a prior cancer diagnosis, or their final admission was to a private hospital. Females, people with comorbidities, and people who had a longer survival duration, had lower odds of potentially burdensome end-of-life care.
Significance of results
Findings highlight socioeconomic and system-level disparities that may inform policy and clinical strategies to improve equitable, patient-centered end-of-life care.
To translate the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-ELD14 (EORTC QLQ-ELD14) into Chinese and validate its effectiveness in China.
Methods
The Chinese version was developed through a rigorous translation and back-translation process based on the Brislin model, followed by cross-cultural adaptation through expert consultation. A total of 260 elderly cancer patients from a tertiary hospital in Tianjin were recruited between June 2024 and February 2025 to evaluate the instrument’s reliability and validity.
Results
Among the 248 completed responses, the Chinese version of the EORTC QLQ-ELD14 demonstrated robust psychometric properties. The questionnaire comprises 7 dimensions (14 items), with item-level content validity indices ranging from 0.800 to 1.000 and a scale-level content validity index of 0.980. Exploratory factor analysis identified 7 underlying factors, accounting for 82.913% of the cumulative variance. Internal consistency was excellent, with a Cronbach’s α of 0.958 for the total scale and dimension alphas exceeding 0.800. Test–retest reliability was 0.849 for the total scale and ranged from 0.813 to 0.856 across dimension.
Significance of results
The Chinese version of the EORTC QLQ-ELD14 has good reliability and validity, which is suitable for evaluating the quality of life of elderly cancer patients within Chinese cultural contexts.
The breath counting task (BCT) has shown evidence of validity as a behavioral measure of mindfulness in healthy populations but remains largely untested in clinical contexts. The BCT is a computerized measure of present-moment awareness based on breath-counting accuracy. This study provides a preliminary evaluation of its validity in adults with advanced cancer and their family caregivers.
Methods
Fifty-five patient-caregiver dyads were randomized to a 6-week mindfulness intervention or usual care. Participants completed the BCT and self-report surveys at baseline, post-intervention, and 1-month follow-up. The BCT’s construct validity was examined through: (1) sensitivity to mindfulness intervention using linear mixed models, (2) convergent validity via correlations with self-reported mindfulness and theoretically related constructs (e.g., inner peace), and (3) criterion validity via correlations with clinical outcomes (e.g., quality of life).
Results
Findings differed for patients and caregivers. Among caregivers, the BCT demonstrated sensitivity to intervention; breath-counting accuracy on the BCT increased over time in the mindfulness condition and remained stable in the usual care condition. Among patients in the mindfulness condition, greater breath-counting accuracy was moderately associated with better quality of life at follow-ups, including a significant correlation at 1 month (r = .57, p < .05), supporting its criterion validity. Evidence of convergent validity was limited. However, for patients and caregivers, greater breath-counting accuracy was moderately associated with higher self-reported mindfulness facets following intervention.
Significance of results
Preliminary findings suggest the BCT may capture certain attentional aspects of mindfulness in patients with advanced cancer and caregivers; however, patterns varied across groups, highlighting the need for further evaluation of its validity in clinical contexts.
While parental prognostic awareness is a vital concept, its complexity can sometimes be underestimated. Our study aimed to understand how parents of children with serious illness engage with the idea of their child’s death from a lived experience perspective.
Methods.
Bereaved parents of children known to a statewide pediatric palliative care service, who died at the age of 16 years or younger from any medical condition, participated in semi-structured interviews. Reflexive thematic analysis was employed, informed by a phenomenological framework.
Results.
Twenty bereaved parents (6 fathers) participated; children ranged in age from 1 day to 16 years. Findings were categorized into 2 main themes: (1) Daily realities of engaging with the idea of death, with subthemes: variability in contemplating death, conversations with their child, conversations with family and friends, conversations with clinicians, making treatment decisions, and not engaging with death, and (2) factors influencing engagement, with subthemes: implicit factors, changes in clinical condition, and clinician communication.
Significance of results.
Parents’ engagement with the idea of their child’s death was individual and dynamic. Our findings offer tangible examples of how parents contemplate and operationalize this engagement over time, helping clinicians appreciate the complex and non-binary nature of prognostic awareness. Clinicians should explore how parents engage with the idea of their child’s death both during and outside clinical encounters over time, acknowledge their role in supporting and guiding parents, and recognize that there is no single way for parents to process the idea of their child’s death.
Although spiritual pain in cancer patients has been extensively studied, little is known about the spiritual pain experienced by bereaved caregivers in Japan.
Objectives
This preliminary scale development aimed to clarify the structure of spiritual pain experienced by bereaved caregivers of cancer patients.
Methods
This preliminary scale development was conducted as a secondary analysis of the nationwide J-HOPE4 survey, a cross-sectional questionnaire study of bereaved family members of cancer patients. Thirty-five items related to spiritual pain were analyzed using exploratory factor analysis (EFA).
Results
Responses were obtained from 930 bereaved caregivers in general hospitals and palliative care units. Seven constructs were obtained through the EFA: Loneliness, Life’s heartlessness, A sense of unfinished business, Distress over patient deterioration, Remorse, Regret, and A sense of loss.
Conclusion
This preliminary scale development provides insights into the structure of spiritual pain experienced by bereaved caregivers of cancer patients. Further validation using independent samples is required.
Significance of results
Seven factors of spiritual pain were identified among bereaved caregivers of cancer patients, and understanding this multidimensional experience may inform supportive care.