Palliative Medicine最新文献

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.

Background: Preparing for the end of life is believed to help mitigate emotional suffering for both patients and their caregivers. However, empirical evidence on the emotional benefits of feeling prepared for death remains limited.

Aim: This study uses data from the international iLIVE project to examine how perceived end-of-life preparedness is associated with emotional suffering among patients and their caregivers before and after death.

Design: Data from a prospective cohort study from the iLIVE project (2020-2023) were analyzed. Participants were surveyed at baseline, 1-month follow-up, and where possible after the patient's death. The association between end-of-life preparedness (ICECAP-SCM/CPM) and emotional suffering (ICECAP-SCM/CPM & HGRC) was examined using OLS regression models, adjusting for socio-demographic and health-related covariates.Setting/participant:Data came from 1041 patients and 496 caregivers across 11 countries, enrolled in the iLIVE project.

Results: Feeling fully prepared for the end of life was significantly associated with lower levels of emotional suffering for both patients and caregivers. Among patients, preparedness was linked to reduced emotional suffering at baseline and follow-up. For caregivers, these associations were even more pronounced at baseline, follow-up, and after the patient's death.

Conclusions: Perceived preparedness for the end of life was associated with lower emotional suffering for patients approaching death and their caregivers, both during the illness and after bereavement. These findings suggest that encouraging end-of-life planning may support emotional well-being across the final phase of life and beyond.

Background: Identifying palliative care needs in older adults is challenging due to variations in the indicator focus, applicability, and sensitivity of existing instruments.

Aim: To systematically review the appropriate instruments for identifying potential palliative care needs in older adults and to assess their clinical performance and effectiveness.

Design: We conducted an umbrella review of systematic reviews that evaluated validated instruments for identifying palliative care needs in older adults across any healthcare setting (PROSPERO registration number: CRD42024616393).

Data sources: PubMed, Web of Science, CINAHL, Cochrane Library, CNKI, WangFang, and VIP databases were used to systematically search for published studies from their inception to October 2024.

Results: Eleven systematic reviews were included in this study and a total of 29 instruments were identified in the literature. Of these, eight provided data on clinical performance. The Surprise Question (SQ), Supportive and Palliative Care Indicators Tool (SPICT), Necesidades Paliativas (Palliative Needs) (NECPAL), and the Palliative Care Rapid Emergency Screening (P-CaRES) were the most frequently identified instruments in older adults. Findings regarding the prognostic capacity of these instruments were inconsistent across the reviews. While three reviews reported the effectiveness of these instruments, evidence on their impact remains limited.

Conclusion: The SPICT and NECPAL instruments have been implemented across diverse healthcare settings, including inpatient, outpatient, and general practice environments, demonstrating good sensitivity in their applications, while the P-CaRES is recommended for identifying palliative care needs in emergency departments. Future research should employ rigorous study designs to validate their effectiveness in enhancing patient-centered outcomes.

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.