Palliative Medicine最新文献

Background: Psychological distress is a common problem near the end of life, for which we lack effective, timely and scalable treatments. No previous study has assessed whether microdose psilocybin can improve symptoms in this population.

Aim: To determine whether microdose psilocybin is safe, feasible and potentially efficacious in a palliative setting.

Design: Open label, single-arm clinical trial of a 3-week oral psilocybin intervention, starting with 1 mg daily in week 1, increased to 2 mg in week 2 and 3 mg in week 3.

Clinicaltrials: gov NCT04754061.

Setting/participants: Two-center study in Ottawa, Canada of adults with advanced, incurable illness and an estimated prognosis of 1-12 months, experiencing severe psychological distress.

Results: We enrolled 20 participants (59% of those screened) between January 2024 and April 2025, of which 17 began and 13/17 (76%) completed the intervention. Participants were 40-84 years old, 53% female, and 82% had cancer. There were no serious adverse events reported, and nine mild or moderate adverse events. Four participants withdrew due to disease progression or poor response. Of the 13 remaining participants, nine (69%) reported a meaningful global improvement (Patient Global Impression of Change ⩾ 5); 8 (62%) reported >50% improvement in Hamilton Depression Rating Scale scores, 7 (54%) reported >50% improvement in Hospital Anxiety and Depression Scale scores and 9 (72%) reported a meaningful improvement in Demoralization Scale II scores.

Conclusions: Microdose psilocybin is a safe, feasible and potentially efficacious treatment for psychological distress in people with advanced illness.

Introduction: Muslims constitute the largest religious minority in Euro-American countries. Interactions between Muslim patients and healthcare providers in end-of-life care may give rise to religio-cultural ethical dilemmas, resulting in tensions. Understanding these tensions may support care providers in navigating the critical transition from life to death within non-Muslim majority contexts.

Aim: To thematically map ethical tensions arising from religio-cultural dilemmas in end-of-life care for Muslim patients, and to equip healthcare professionals in Euro-American contexts with the insights needed to address them.

Design: A scoping review was conducted in accordance with the Johanna Briggs Institute (JBI) methodology.

Data sources: A comprehensive literature search was performed in Scopus, Medline, CINAHL, and APA PsycInfo, from inception to 7 November 2024, in collaboration with a medical information specialist. Empirical studies addressing religio-cultural ethical dilemmas and tensions in end-of-life care for Muslims were included.

Analysis: Ethical tensions were examined using a structured framework integrating theological perspectives with empirical findings.

Results: Of 9237 records screened, 12 studies met the inclusion criteria. Three overarching themes emerged: (1) end-of-life communication, (2) spiritualizing pain, and (3) treatment withholding/withdrawal. Tensions were most pronounced when divergent moral frameworks prioritized conflicting principles.

Conclusions: Ethical tensions in end-of-life care for Muslim patients in Euro-American healthcare settings reflect diverse, context-dependent interpretations of Islamic principles. Addressing these tensions requires early, culturally sensitive engagement and the development of a shared ethical framework in close collaboration with healthcare providers, Muslim chaplains, mosques, imams, and umbrella organizations.

Background: Effective advance care planning depends on clinician-patient communication quality. However, ACP-CAT, the only validated observer-rated instrument, remains untested in real-world clinical encounters and non-Western contexts.

Aim: Validating ACP-CAT in assessing clinician-patient communication quality with advanced cancer and chronic kidney disease in Hong Kong, comparing against patient and family ratings of clinician communication.

Design: Cross-sectional study of adult patients with advanced cancer or chronic kidney disease from five hospitals and one hospice service. Two independent raters evaluated audiotaped advance care planning conversations using ACP-CAT, while patients and family members assessed communication quality using the Chinese Quality of Communication Questionnaire (C-QOC). We assessed the psychometric properties, including interrater reliability, convergent and discriminant validity.

Setting/participants: One hundred and thirty-seven advance care planning conversations involving 84 cancer patients, 53 renal patients, 107 family members, and 20 clinicians.

Results: ACP-CAT demonstrated high interrater reliability (mean Gwet's AC1 = 0.81; 88.6% agreement). Convergent validity was demonstrated through significant correlations between ACP-CAT total score and patient-rated C-QOC End-of-life planning subscale (r = 0.29, p < 0.01), family-rated C-QOC summary score (r = 0.27, p < 0.05), and family-rated C-QOC End-of-life planning subscale (r = 0.34, p < 0.01). Discriminant validity was supported by absence of correlations with patients' self-rated health status and information or decision-making preferences (all p > 0.05). Clinicians frequently explored patients' fears and health goals, but rarely discussed nonmedical priorities, valued activities, or surrogate decision makers.

Conclusions: ACP-CAT demonstrates strong concurrent validity with patient- and family-rated measures and ecological validity in real clinical settings. These findings support its reliability for assessing advance care planning communication quality across diverse cultural contexts.

Background: The use of artificial intelligence (AI) in medicine has surged. Given the sensitive nature of palliative care, it is crucial to apply AI tools in a patient-centered and ethical manner.

Aim: We sought to understand the ethical implications of implementing AI-based tools in palliative care from various stakeholders.

Design: Using a framework of ethics of care, we conducted thematic analysis to identify emerging themes.

Setting/participants: We recruited and interviewed 22 participants: six patients, four care-partners, five clinicians, three bioethicists, and four clinician-bioethicists, recruited through a single hospital clinic for patients and care-partners and purposeful snowball sampling for clinicians and bioethicists based on their knowledge and interest in AI-based tools. The mean age of participants was 48 years old; 64% were male. Clinician participants had practiced for a mean of 11 years, and ethicists for 15 years. We aimed to recruit clinicians and bioethicists from multiple states and specialties.

Results: From the interviews we extracted five main themes: (1) Primacy of the doctor-patient relationship over AI performance; (2) Humans have intuition and nuance that AI lacks; (3) Agreement about the importance of oversight of AI tools; (4) New AI technologies should include a process for patient education; and (5) AI increases efficiency, scalability, and a more unified approach to serious illness.

Conclusions: When building and implementing AI-based tools, we recommend: establishing oversight committees; reflecting on the unique contributions of humans to care; proactively educating patients and contextualizing the tools; and ensuring data use is restricted to clinical care.

Background: Homecare workers (paid workers without professional qualifications who provide care for people within their own homes) are crucial providers of end-of-life care (the last 6 months of life) but are not part of the healthcare multidisciplinary team. Little is known about the homecare worker role within interprofessional working practices.

Aim: To explore the experiences of end-of-life homecare provision, from multiple perspectives.

Design: A qualitative multiple case study using semi-structured interviews, and the option to create a Pictor chart - a visual diagram of relationships between those involved in care provision. Data were analysed using a reflexive thematic analysis. An adaptation of Bronfenbrenner's ecological systems theory was used to inform the analysis.

Setting/participants: Homecare workers and managers, people receiving care, carers, social, and healthcare practitioners from three economically and culturally diverse geographical regions within England.

Results: 133 participants were recruited (case 1 = 49, case 2 = 34, case 3 = 49). Although examples of good practice were seen, common barriers to collaboration between health and social care practitioners and homecare workers were identified: lack of healthcare practitioner knowledge/training on homecare workers' role and its value, and poor communication (gatekeeping by managers, asynchronous working practices, restricted access to documentation and systems).

Conclusion: The homecare worker role was poorly understood and undervalued with inadequate communication and interaction between practitioners, potentially impacting on quality of care. Collaborative practice is necessary for provision of high-quality care, but we found this was often absent due to knowledge, professional, and organisational barriers. Further research should explore suggested strategies to address the barriers identified.

Background: Palliative care is advocated for improving quality of life and symptom control in people with progressive neurological diseases. However, most research has been conducted in Western culture, leaving a gap in Asian contexts. Understanding illness experience and perceived needs is essential for developing culturally tailored palliative interventions.

Aim: To explore the lived experience of people with progressive neurological diseases in Hong Kong and their perceptions of palliative care.

Design: Qualitative study using an interpretive description approach and thematic analysis.

Setting/participants: Twenty-five patients (10 Parkinson's disease; 15 multiple sclerosis) were interviewed from August to October 2022.

Results: Four themes were identified: (1) struggles with "invisible pain": living with unpredictability and uncontrollability; (2) renegotiating life amid progressive loss of functions; (3) a desire for person-centered holistic care, and (4) dilemmas in future care planning amid limited awareness of palliative care. Participants experienced profound psychospiritual distress, disrupted self-identity, and social disconnection. While seeking acceptance and a positive outlook, they felt their holistic needs were overlooked by a healthcare system focused mainly on physical symptoms. Most were unfamiliar with palliative care, viewing it as irrelevant to progressive neurological diseases, yet desired compassionate, whole-person care, including psychospiritual support. Despite recognizing the need for future care planning before cognitive decline, barriers including emotional burden, family reluctance, and limited information impeded open discussions.

Conclusions: Progressive neurological diseases significantly affect psychospiritual and social wellbeing. A person-centered, symptom-based palliative care approach, tailored to the fluctuating trajectory of progressive neurological diseases, is essential to address these multidimensional needs.

Background: Grief experienced by parents following the death of their child is profound and places them at a higher risk of adverse health outcomes. Memory making practices intend to provide families the tools to meaningfully adjust and make sense of a child's death. Although memory making practices are established in end-of-life care, it remains uncertain how memory making interventions are experienced by families during bereavement.

Aim: This study aims to provide evidence-based insights into the memory making experiences of parents during neonatal and paediatric bereavement care.

Design: This is an exploratory descriptive mixed-methodology study using a Melbourne-based cross-sectional electronic-survey.

Setting/participants: Thirty-three bereaved parents participated in this study. All families were known to the Neonatal Intensive Care Unit and/or the Victorian Paediatric Palliative Care Program at The Royal Children's Hospital. This study captures the experiences of bereaved parents whose children died between 1 January 2018 and 31 December 2020.

Results: The majority of parents who took part in memory making activities had a positive experience. Parent responses came together across four themes: (1) Experiential memory making is emotionally challenging but rewarding, (2) Physical memory making keeps the child real and part of the family, (3) Regret over missed opportunities and (4) Catering to individual needs.

Conclusion: Personalised provisions of love and care were dignities parents could warmly reflect back on during their bereavement. Importantly, tailoring memory making practices to the unique needs of the family and the dying child ensures both have their needs acknowledged and met.

Background: Community Palliative Care Services, a limited resource, helps patients spend as much time at home as possible by managing their symptoms and supporting caregivers in the community.

Aim: To describe the characteristics of patients discharged alive from the Community Palliative Care Services and to determine the outcomes of those discharged alive, including overall survival, subsequent place of death, and health service use.Design, setting/participants:Linked administrative clinical data were analysed for all adults discharged from an Australian metropolitan Community Palliative Care Services in Sydney between July 2010 and September 2018. That data comprised death records, ambulance, emergency, and hospital admissions. Factors associated with 30-day re-presentation to these services after discharge from the Community Palliative Care Services were examined using logistic regression.

Results: Of 5270 community patients, 20% (n = 1095) were alive at discharge. The median follow-up after the first discharge was 259 (95% CI 214-287) days, with 40% (n = 454) of these having a subsequent community palliative care referral. Six hundred and sixty-four (61%) died within a year of discharge, and 45% (n = 495) died in the community. Patients who lived in private residences and who had a malignant disease had higher odds of 30-day hospital re-presentation.

Conclusion: As the demand for Community Palliative Care Services increases, delivering equitable and efficient services to patients with palliative care needs becomes challenging with limited resources. Factors associated with hospital readmission shortly after discharge from the Community Palliative Care Services should be further explored to determine interventions that may support patients and families in their illness trajectory.

Background: Palliative Care is concerned with relieving suffering and improving the quality of life of patients and their families. Currently, questions arise about how to provide patients with good end-of-life care. There has been increasing interest in the beneficial effects of using psilocybin-assisted therapy in patients with severe chronic illnesses near the end of their lives and who present symptoms of depression and/or anxiety.

Aim: Explore the role of psilocybin-assisted therapy in palliative care, synthesizing evidence from clinical trials and longitudinal studies.

Design: Systematic review.

Data sources: A bibliographic search was performed in April 2024 in B-on, PubMed, Web of Science, and Scopus. Eligible studies included peer-reviewed quantitative research (RCTs, longitudinal, and observational designs) with adult participants in palliative care settings, examining the efficacy and safety of psilocybin-assisted therapy. Reviews, gray literature, and studies outside the scope of palliative care were excluded.

Results: Of the 215 articles found, six studies (n = 74 participants; age range 22-75 years) met the inclusion criteria. Across randomized and open-label trials, psilocybin-assisted therapy produced clinically significant reductions in depression and anxiety, with 57-79% of participants achieving ⩾ 50% symptom reduction on standardized scales (e.g. HAM-D, HAM-A, BDI, STAI). Improvements were sustained for up to 6-8 months in most trials, and in one follow-up study, for up to 4.5 years. Reported adverse effects were generally mild and transient, including nausea, vomiting, and temporary increases in blood pressure and heart rate; no serious adverse events were observed.

Conclusions: Psilocybin-assisted therapy consistently demonstrated efficacy and safety in the reduction of depressive and anxiety symptoms. However, more studies exploring integrating psilocybin-assisted therapy into existing palliative care healthcare systems are needed. This includes investigating the feasibility, acceptability, and cost-effectiveness of integrating psilocybin-assisted therapy into routine clinical practice.

Background: Specialist palliative care provides holistic care for individuals with health-related suffering and those close to them. Historically this included people with advanced cancer, however, people living beyond cancer also have significant unmet needs. Specialist palliative care could potentially provide support, but evidence for their role is limited.

Aim: To generate consensus opinion among European experts about the role of specialist palliative care for people living beyond cancer.

Design: The PRiSM project (Specialist Palliative care's Role in Cancer Survivorship Model) was an electronic Delphi study. Participants provided anonymous feedback on statements across three rounds. Consensus was pre-defined as ⩾75% within each group. Spearman's Rank Order Correlation determined stability and the Chi square test for goodness of fit compared group outcomes.

Setting/participants: European professional experts and patient advocates were invited via email, forming two groups undertaking simultaneous processes: specialist palliative care (86 experts representing 19 countries/regions) and oncology (54 experts representing 17 countries/regions).

Results: Eighty specialist palliative care and 49 oncology experts completed the process. Outcomes were achieved about the general core functions of specialist palliative care and areas requiring education, and their potential role for people living beyond cancer. Sixty statements reached stable consensus in both groups. Comparing other outcomes, 16 statements reached consensus in only one group, nine with a significant difference.

Conclusions: European specialist palliative care and oncology experts reached consensus that specialist palliative care should have a role in supporting people living beyond cancer, specifically in pain management. Results will inform a new care model.