Palliative Medicine最新文献

Background: There is a lack of evidence to guide the administration of phenobarbital for managing refractory symptoms in paediatric palliative care patients at home during the terminal phase.

Case presentation: Three terminal home-based paediatric cases with refractory symptoms that caused significant distress to both the child and family during the final days of life. All three cases had several changes in medications before receiving phenobarbital.

Case management: The first case had a loading dose of phenobarbital based on an adult guideline; the second case commenced a continuous phenobarbital infusion without a loading dose of phenobarbital; and the final case had a weight-based loading dose.

Case outcome: In the absence of paediatric clinical guidelines for the use of phenobarbital in refractory symptom management, a weight-based loading dose of phenobarbital before commencing a continuous infusion provided enhanced symptom management when compared with a loading dose using adult guidance or the absence of one.

Conclusion: Further research is needed on the administration of a loading dose of phenobarbital for managing terminal refractory symptoms in the paediatric palliative care population during the terminal phase. This will help to establish evidence-based guidelines for paediatric palliative sedation, ensuring appropriate relief of refractory symptoms for a peaceful death at home.

Background: Transitioning from hospital to community represents a vulnerable stage in the palliative care journey for patients with advanced illness. The decision regarding care setting is often shaped by multiple factors and involves a range of challenges and burdens.

Aim: To synthesise the decision-making experiences of patients with advanced illness and their caregivers during transitions from hospital to community palliative care.

Design: A systematic review of qualitative studies. Thomas and Harden's thematic analysis approach was used for data synthesis. The review protocol was registered in PROSPERO (CRD42023494617).

Data sources: PubMed, Web of Science, The Cochrane Library, Embase, CINAHL, CNKI, WanFang and Vip were searched up to 22 November 2023.

Results: Ten papers were included in this review. Three themes emerged: (a) perceived insecurity of transfer, highlighting perceived risks associated with transitions and the resulting decision-making difficulties; (b) balancing priorities in care, reflecting how patients and caregivers weigh multiple considerations, including medical support, caregiving capacity and personal commitment; and (c) love and belonging-regaining meaning of lives, illustrating the spiritual meaning of care settings for patients and caregivers.

Conclusions: Patients with complex psychosocial needs and their caregivers were particularly vulnerable during the decision-making process, especially when external support was insufficient. Therefore, healthcare providers are recommended to actively engage by enhancing communication skills and utilising decision aid tools to provide comprehensive and sufficient information to patients and caregivers.

Background: Therapeutic advances have significantly extended survival for certain groups of patients with incurable cancer, creating a growing population living long-term with incurable cancer. However, the absence of standardized definitions and terminology has contributed to limited recognition of this distinct group and their specific care needs.

Aim: To achieve consensus on definitions and terminology for patients living long-term with incurable cancer by incorporating perspectives of patients, informal caregivers, healthcare professionals, and other relevant stakeholders.

Design: A modified hybrid Delphi study, comprising focus groups and a three-round Delphi consensus process.

Setting/participants: Three focus groups were conducted with patients (n = 11), informal caregivers (n = 4), and healthcare professionals (n = 6). The multidisciplinary expert group comprised medical specialists (n = 5), epidemiologists (n = 3), and patient advocates (n = 2). The Delphi study involved 78 panelists (73 unique respondents) divided into three subpanels: patients and informal caregivers (n = 22), healthcare professionals (n = 36), and other stakeholders (n = 20). All participants were from the Netherlands.

Results: We achieved 88% consensus on the terminology: Patients living long-term with incurable cancer. Consensus was reached on the definition (94%) for patients living for two or more years with: (1) incurable metastatic cancer, (2) incurable hematological malignancies, (3) incurable locally advanced cancer, or (4) patients with exceptionally long survival for their cancer type, despite not meeting the 2-year criterion.

Conclusions: This modified hybrid Delphi study established the first consensus-based framework for patients living long-term with incurable cancer, providing essential groundwork for improved recognition and tailored care approaches for this population.

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.

Background: This study leverages the Province of Quebec (Canada)'s 2014 End-of-Life Care Act, which regulates the use of continuous palliative sedation and mandates its reporting, to describe its use at a population-based level.

Aim: To describe the demographic and clinical characteristics of patients who received continuous palliative sedation, and to examine variabilities in clinical practice across diagnoses, indications, and care settings.

Design: Retrospective convenience cohort of patients who received continuous palliative sedation until death.

Setting/participants: A total of 1005 patients' reporting forms from academic and regional hospitals and hospices between January 1st, 2016 and March 31st, 2022 were analyzed, representing 12% of all reported continuous palliative sedations performed in the Province of Quebec.

Results: The sample was 51% male, median age of 73 years (IQR 64-81). Most (45%) received continuous palliative sedation in academic hospitals, 40% in hospices, and 15% in regional hospitals, but none in chronic care institutions or at home. Cancer was the most prevalent diagnosis (78%). The main indications were psychological/existential distress (57%), respiratory distress (34%), pain (28%), and delirium (24%); half had more than one form of distress. Overall median duration was 2 days (IQR 1-5), significantly longer in cases of psychological/existential distress (3 days, IQR 1-7; p < 0.0001). Medications commonly used were methotrimeprazine (74%), midazolam (69%), and lorazepam (48%), frequently in combination. 93% of patients died peacefully, while 6% experienced incomplete symptom relief, and 1%, complications.

Conclusions: The study demonstrated that standardization in the practice of continuous palliative sedation can be achieved across diverse clinical settings.

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: Informal caregivers are vital in providing end-of-life care to their loved ones. However, there is a lack of systematic understanding of their coping strategies during the caregiving process.

Aim: To synthesize qualitative data about coping strategies of informal caregivers of people with non-dementia terminal illnesses with a prognosis of less than 12 months.

Design: Systematic review and thematic synthesis of qualitative studies and qualitative components of mixed-methods studies, appraised using the Mixed Methods Appraisal Tool.

Data sources: Seven electronic databases (Airiti Library, CINAHL Plus, PsycINFO, PubMed, Scopus, Wanfang, and Web of Science) were searched from inception to August 2025.

Results: Analysis of 44 studies involving 691 caregivers generated five themes revealing that caregivers employ both adaptive and avoidance strategies. Caregivers managed distress by avoiding acknowledgment of death and decline, mobilizing professional and social support networks, cognitively reframing their situations through positive reappraisal and acceptance, deriving meaning through fulfilling relational obligations and spiritual beliefs, and maintaining normalcy by continuing personal routines and shared activities with care recipients. Coping emerged as a complex, fluid process wherein caregivers shifted between strategies to manage dual stressors: caregiving responsibilities and pre-death grief encompassing losses of identity, time, and anticipation of death.

Conclusion: Caregivers dynamically navigate simultaneous stressors of caregiving demands and pre-death grief through multiple strategies. Palliative care services should integrate routine caregiver grief assessment throughout the illness trajectory and implement early interventions addressing both caregiving stress and pre-death grief, rather than only addressing caregiving burden and bereavement.

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: Internationally the number of young adults living with life-limiting conditions is increasing. Holistic concerns of this population have not been reviewed. It is unclear whether patient reported outcome measures used in this population capture their symptoms and concerns.

Aims: To: (1) identify and synthesise the symptoms and concerns of young adults (aged 18-39) living with life-limiting conditions; (2) evaluate the content validity of patient reported outcome measures used in this population.

Design: A mixed-methods systematic review and framework synthesis. PROSPERO ID CRD42024565986.

Data sources: MEDLINE, EMBASE, Cochrane, CINAHL, PsycINFO, AMED from inception to 04/07/24.

Results: A total of 16552 articles identified, 100 included. Among these, 34 studies addressed aim 1. Of these 18 were qualitative, 12 mixed methods, 3 quantitative, and 1 used quantitative and qualitative methodologies. 66 quantitative studies addressed aim 2. They used 65 patient reported outcome measures, and 13 questionnaires to capture pre-defined symptoms and concerns. Symptoms and concerns included: physical (fertility and reproductive health, sexual concerns), psychological (embarrassment, suicidal thoughts and body image), social (loss of independence, balancing roles as a parent, missing out on events), spiritual concerns (uncertain future, life on hold), and quality of healthcare concerns (age-specific caring environments, role of partners as caregivers, involvement in decisions). Of the patient reported outcome measures identified as used with young adults, few were holistic.

Conclusion: This review highlights the need for holistic, age-specific person-centred outcome measures for young adults living with life-limiting conditions. We present a conceptual framework of symptoms and concerns that can be used to develop or modify existing patient reported outcome measures for this population.