Palliative Medicine最新文献

Background: Provision of bereavement care is not standard practice in palliative care, meaning routinely collected data to understand support quality at a service level is scarce. Survey research can fill this gap.

Aim: To pilot and refine a survey and the survey method to measure the quality and variations in bereavement support at a service level.

Design: Cognitive interview study. In analysis we used a combination of reparative and descriptive cognitive interview approaches to ascertain measurement errors and any participation distress.

Setting/participants: People bereaved due to cancer (13-19 months post death) were consecutively recruited via a hospital-based palliative care service.

Results: Twenty bereaved people participated (parental bereavement 8/20, partner 7/20, sibling 3/20, adult child 2/20); median age 59 (range 28-76), 6 men. Cancer deaths occurred 16-19 months before the interview. Identified measurement errors, mostly related to comprehension, were fixed. We refined the definition of bereavement support in the context of the survey and reordered the sections to reduce emotional burden and improve time completion. Participating in the survey was considered distressing yet personally valuable, relevant and important for improving bereavement support.

Conclusions: We developed, piloted and refined a survey to assess quality and variations in bereavement support which can be used by palliative care services in clinical practice for quality improvement. Survey participation, while potentially distressing, was acceptable to and valued by bereaved people.

Background: Advance care planning enables individuals to define goals and preferences for future medical care. Despite advances in research and the production of tools and methods for advance care planning, uncertainty remains regarding whether and which interventions support intended outcomes for patients. This lack of clarity is occurring despite high financial investment into advance care planning research through grant funding, relative to other palliative care areas.

Aim: To utilise published reviews to explore the efficacy of current advance care planning interventions, including how they are evaluated, and whether they achieve their intended outcomes for adults living with an advanced illness.

Design: Meta-review of reviews.

Data sources: Five electronic databases (PubMed, CINAHL, EMBASE, Medline and PsychINFO) were searched for reviews published between 2015 and 2025. Quality of reviews was assessed by the AMSTAR-2 tool.

Results: Thirty-nine reviews were included. Fifteen reviews evidenced significantly decreased hospital utilisation in line with patient's preferences following advance care planning. Fourteen reviews evidenced significant increases in patients receiving care consistent with their goals, and 12 evidenced significant increases in patients documenting their preferences. Evidence on the impact of advance care planning on decisional conflict was mixed.

Conclusions: This review highlights where advance care planning interventions significantly impact outcomes defining successful advance care planning. The existence of a range of interventions can accommodate preferences of patients or families regarding how to receive and engage with their options. This heterogeneity is, however, a challenge for synthesising research data to understand the impact of interventions and inform practice.

Background: The need for palliative care is rising rapidly, but meeting global demand is falling behind. Telepalliative care offers a potential solution, though its implementation requires careful ethical evaluation.

Aim: To provide an overview of the ethical concepts and arguments related to telepalliative care as presented in the argument-based literature.

Design: We conducted a systematic review of argument-based literature following PRISMA-guidelines (PROSPERO: CRD42024533732). Data extraction and synthesis followed the Qualitative Analysis Guide of Leuven.

Data sources: We searched 12 databases covering medical, ethical, and technological disciplines using broad, unfiltered terms. Publications in English, French, German, or Dutch on telehealth, palliative care, and ethics were considered. Two researchers independently screened publications, using peer review as a quality proxy due to the lack of standards for argument-based literature.

Results: Twenty-six publications were included. Two main ethical approaches emerged: one related to the four principles of biomedical ethics and the other to care. Regarding respect for autonomy, telepalliative care may both promote and limit autonomy, with concerns raised about informed consent, privacy, and confidentiality. Regarding beneficence, potential improvements in symptom management and quality of life were identified. Regarding non-maleficence, risks such as replacing in-person care and medicalizing the home environment were highlighted. Regarding justice, issues of access, equity, distributive justice, and environmental issues were addressed. Concerns about the patient-provider relationship and holistic care were central to care-related arguments.

Conclusions: Telehealth's benefits challenge its incompatibility with palliative care, however, significant risks threaten core palliative care values. Thus, careful implementation must prioritize ethical considerations.

Background: Refugees experience barriers to health care after resettlement and may have distinct palliative care needs. There is no systematic guidance to support person-centred palliative care services that are responsive to refugees' needs and preferences.

Aim: To synthesis evidence regarding factors enhancing the wellbeing of refugees with advanced life-limiting illness, and their families, to inform palliative care in high-income resettlement countries.

Design: A systematic review of primary research studies. We applied a strength-based assets framework to the data extraction and synthesis and conducted a directed content analysis.

Data sources: We searched nine electronic databases.

Results: Ten of the 1006 studies identified were included in the review: two qualitative, one quantitative and seven case studies. We identified 17 assets that enhanced refugees' wellbeing: resilience, religion, spirituality, sense of identity, belonging, community connections, health and death literacy, acculturation, family and social support, social capital, community structures, access to funeral information, access to services, palliative care service approaches, and workforce capacity. Resilience was linked to identity and belonging, connections within cultural and religious networks, social capital and creating meaningful funeral rituals in resettlement. Palliative care workforce capacity, death literacy, acculturation, refugees' grief experiences and willingness to discuss and plan for death, influenced refugees' attitudes to palliative care, communication with staff about treatment, prognosis and spiritual care, and care outcomes.

Conclusions: Further research, co-designed with diverse refugee groups, is needed to inform palliative care service approaches, develop interventions to strengthen key assets and explore the nuanced role of social capital in end-of-life care.

Background: The last three months of life (end-of-life phase) are profoundly challenging for patients with brain tumours and their family caregivers. Post-bereavement outcomes are largely unknown.

Aim: To better understand long-term outcomes of a brain tumour diagnosis on families, we aimed to describe caregiver experiences during the end-of-life phase and beyond.

Design: In this sequential mixed-methods study designed together with bereaved caregivers, we used an online survey. This comprised end-of-life experiences, and post-bereavement outcomes (family functioning: Family APGAR; resilience: CD-RISC-10; mood: HADS; prolonged grief: PG-13-R; post-traumatic stress: TSQ).

Setting/participants: Caregivers of patients with brain tumours who were bereaved ⩾6 months ago were invited through social media and charities.

Results: 105 bereaved neuro-oncology caregivers participated. The end-of-life phase was marked by high symptom burden and disruption to family life, compounded by often unsatisfactory information provision and support. Forty-three percent did not describe the patient's death as dignified. Most caregivers were not well-supported post-bereavement, and current functioning was impacted by notable rates of prolonged grief disorder (64%), post-traumatic stress disorder (42%), depression (35%), anxiety (61%), disruption to family life (53%) and low levels of resilience. Multivariable regressions found better resilience and family functioning to be protective factors for both post-traumatic stress disorder and prolonged grief disorder symptoms, with a dignified death additionally linked to caregivers' prolonged grief scores, explaining 23.8% and 51.0% of variance, respectively.

Conclusions: Bereaved neuro-oncology caregivers have high rates of adverse mental health outcomes, highlighting a pressing need for improvements in palliative, end-of-life and post-bereavement services.

Background: The number of young adults living with life-limiting conditions is increasing. This population requires palliative care responsive to their needs and preferences.

Aim: To identify patient reported outcome measures developed, adapted and validated to assess the health outcomes of young adults (aged 18-25 years) living with life-limiting conditions. To examine their measurement properties and identify the most comprehensive, valid and reliable measures.

Design: A systematic review and evaluation of measurement properties. PROSPERO ID (CRD42023443273).

Data sources: MEDLINE; EMBASE; CINAHL; PsycInfo; AMED and Cochrane Library from inception to 03/07/2023. Searches were emented by hand-searching references.

Results: Four thousand nine hundred twenty-two papers were identified. Five hundred and fifty-six full texts were assessed for eligibility. Thirty-five papers reporting 68 patient reported outcome measures were included. Most studies recruited young adults living with cancer (n = 29/35), we did not identify any studies with young adults living with complex neurodisability. Most measures (n = 61/68) were existing paediatric or adult patient reported outcome measures. Seven (n = 7/68) were young adult measures. Most were two-dimensional. The most assessed measurement properties were internal consistency, construct validity and structural validity. None of the measures were recommended for use as they did not meet sufficient criteria for content validity and internal consistency.

Conclusion: There is a lack of multi-dimensional patient reported outcome measures for young adults living with life-limiting conditions, especially for non-cancerous conditions. Future studies may identify existing holistic measures developed for children or adults and adapt them for use with young adults. Studies should ask young adults and professionals about the relevance, comprehensiveness and comprehensibility of items.

Background: Research focusing on health care in end-of-life among cancer patients with mental disorders is limited and presents inconsistent findings.

Aim: To investigate disparities in health care in end-of-life among patients who died from lung cancer according to pre-existing mental disorders.

Design: A Danish nationwide cohort study linking nationwide registries on health care in end-of-life including specialist palliative care (including hospice admissions), 'drug reimbursement for terminal illness', high-intensity-treatment during the last 30 days before death and death at hospital, analysed using Poisson regression, adjusted for sociodemographic and clinical factors.

Setting/participants: All adult decedents who died of lung cancer in Denmark from 2011 through 2020, including individuals with mental diagnoses prior to their cancer diagnosis.

Results: Among 36,323 patients dying from lung cancer, 12% had pre-existing mental disorders. Patients with mental disorders were less likely to receive specialist palliative care (adjusted risk ratio (RR) 0.90; 95% CI: 0.87; 0.94), hospice admissions (RR: 0.86; 95% CI: 0.80; 0.94), chemotherapy (RR: 0.66; 95% CI: 0.57; 0.76), radiotherapy (RR: 0.82; 95% CI: 0.74; 0.92), surgery (RR: 0.47; 95% CI: 0.22; 1.00), hospital admissions (RR: 0.96; 95% CI: 0.92; 0.99) and to die in a hospital (RR: 0.88; 95% CI: 0.85; 0.91), compared to patients without mental disorders. No disparities were observed in receiving drug reimbursement, admissions to intensive care units or emergency care.

Conclusion: Pre-existing mental disorders were associated with a lower probability of specialist palliative care, but also some high-intensity-treatments in end-of-life. These patients may be deprived of optimal palliative care but also appeared less subjected to possible overtreatment in end-of-life compared to patients without mental disorders.

Background: The provision of physiotherapy and occupational therapy in palliative care is often poorly understood. There is currently no guidance on how to deliver these services in the community, potentially leading to unwarranted variation in practice and unmet patient need.

Aim: To identify aspects of physiotherapy and occupational therapy provision in community palliative rehabilitation that could improve outcomes.

Design: A realist review of the literature following RAMESES standards, with stakeholder input throughout.

Data sources: Iterative literature searches were conducted from September 2023 to April 2024. All relevant data sources relating to delivery of physiotherapy and occupational therapy in community palliative care were included.

Results: Forty-two international publications were included, published between 2000 and 2023. Five key aspects were identified: (1) Early referral into community palliative rehabilitation. (2) Layered model, basing level of service on complexity of needs. Within this, clinicians without professional qualifications deliver simple interventions after assessment by a qualified physiotherapist or occupational therapist while specialist clinicians review more complex presentations. Services are cohesive by being integrated with primary care, other community services and specialist medical and palliative care and there is representation of physiotherapists and occupational therapists within leadership teams. (3) Holistic assessments form the backbone of the service with personalised interventions tailored to patients' needs and goals. (4) Accessible and flexible services are offered to meet patients' needs throughout their palliative journey. (5) Information and education for patients and carers are available throughout.

Conclusions: Integrating these five key aspects of physiotherapy and occupational therapy provision into community palliative rehabilitation could help ensure palliative patients receive the therapy they need.

Background: Volunteer services that provide direct support to patients receiving palliative and end-of-life care in hospitals are new and developing, but little is known about the use and experience of such services from key stakeholders.

Aim: Explore the perceptions of volunteers, and healthcare professionals, towards newly established hospital end-of-life-care volunteer services, in five countries.

Design: A phenomenological approach was adopted, using focus group interviews. Data were analysed using an adapted framework analysis.

Setting/participants: Acute hospital in-patient units, in five European countries. Participants were recruited if they were: Volunteers from the end-of-life-care volunteer service, or Healthcare professionals working within the wards that the volunteer service is operational.

Results: 20 Volunteers and 20 healthcare professionals were recruited. Most participants were female (70%, n = 14/65%, n = 13). The healthcare professionals included a majority nurses (60%). Three overall themes were generated: (1) Volunteers provided 'unique, distinct, 'community' support' bringing familiarity to an unfamiliar, medically focussed environment. (2) Volunteers were able to 'establish a connection centred on 'being there' within the acute hospital environment' despite the fast paced and highly changeable environment. (3) Through 'relational interactions adapted to the individual person' volunteers attended to patients' existential and emotional needs.

Conclusion: These services confer benefits that are transferrable across cultures and countries, 'fusing' formal care with the informal visiting of family or friends, attending to patients' existential needs. Recommendations include exploring ways to embed the end-of-life care volunteer service into this unique environment, alongside continuing research to explore cultural differences across different countries.