Palliative Medicine最新文献

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: Multidisciplinary neuro-palliative care has been increasingly recommended for the management of patients with motor neuron disease. While international guidelines have highlighted the importance of early palliative care referral, the best model of practice has not been well-defined.

Aim: The objective of this study is to evaluate the outcomes of a structured multidisciplinary neuro-palliative care model developed in regional hospitals in Hong Kong.

Design: A 10-year retrospective chart review.

Setting/participants: Adult motor neuron disease patients under care of three regional hospitals in Hong Kong. Data of patients under the care of multidisciplinary neuro-palliative care taskforce and those who were not were analyzed.

Results: There were 140 motor neuron disease patients included in study. Patients in multidisciplinary neuro-palliative care group received more healthcare intervention and palliative care services, including occupational therapist (92.86% vs 78.57%, p = 0.021), dietician (67.35% vs 42.86%, p = 0.007) and speech therapist (96.94% vs 76.19%, p = 0.000) services, community support by non-governmental organizations (74.49% vs 19.05%, p = 0.000) and formal bereavement support (78.26% vs 17.07%, p = 0.000). Significantly more patients in multidisciplinary neuro-palliative care group had completed Advance Medical Directives (46.94% vs 4.76%, p = 0.000). Patients under multidisciplinary care had longer survival compared to those who were not (HR 0.539, 95% CI 0.372-0.782, p = 0.001). This remains significant after adjusting for factors affecting survival in multivariate analysis.

Conclusions: Multidisciplinary neuro-palliative care demonstrated benefits in motor neuron disease patients in terms of better care coordination and service delivery, higher rate of Advance Medical Directive completion, with possible better survival observed. Future prospective studies are warranted to assess the impact on patient-centered outcomes.

Background: The Analgesia Nociception Index device may serve as a guide to a person's parasympathetic activity via the heart rate variability. It is used to assess the level of discomfort of non-communicative patients at the end of life. Although the index's acceptability in palliative care have been demonstrated, the healthcare professionals and the patient's relatives did not have direct, continuous access to the monitor screen.

Aim: To evaluate how healthcare professionals and patients' relatives in a palliative care unit perceived the use of the Analgesia Nociception Index.

Design: A qualitative, comprehensive, two-centre study was based on individual, semidirective interviews. The interview data were evaluated in a reflexive, thematic analysis.

Setting/participants: We interviewed (i) healthcare professionals who used the Analgesia Nociception Index in their routine practice and (ii) the relatives of patients who had been monitored with the tool during their stay in the unit.

Results: A total of 28 interviews were conducted. The device was perceived mainly to be an additional medical technique for increasing a person's level of comfort. Some professionals highlighted a risk of re-medicalizing the end of life, with a display screen that distracted attention from the person. A few relatives stated that the changes on the screen were a way of staying in touch with their loved one's perception. The tool helped to increase the value of the relatives' support.

Conclusion: The present results might help clinicians to tailor the monitoring to each patient's situation and to communicate more effectively with both care teams and relatives.

Background: Healthcare assistants play a critical role in providing palliative and end-of-life care in the community across many healthcare systems internationally. Despite working alone in emotionally demanding and unpredictable settings, no research has examined their psychological wellbeing or factors influencing turnover.

Aim: To investigate the correlations between mental wellbeing, intention to leave their role and workplace support in lone working healthcare assistants providing palliative and end-of-life care in the community.

Design: Explanatory sequential mixed methods study, using cross-sectional survey (Warwick-Edinburgh Mental Well-being Scale and Turnover Intention Scale, project team-developed questions), followed by interviews. Quantitative data analysed using descriptive and inferential statistics, qualitative data analysed using framework approach.

Setting/participants: Lone working healthcare assistants from a UK non-profit organisation providing palliative and end-of-life care.

Results: Among 218 survey respondents (22.5% response rate), 80% (n = 174) reported average to high mental wellbeing (mean = 52.2, SD = 8.6). Intention to leave was low (mean = 14.9, SD = 5.3). Higher wellbeing correlated with lower intention to leave (r(216) = -0.25, p < 0.001). Interviews (n = 14) and survey data revealed support from known individuals, particularly line managers, was most valued and accessed by 87.2% of respondents, significantly associated with higher wellbeing and lower turnover intention. Clinical supervision and peer support were frequently accessed and valued, though impact on wellbeing and retention varied. Anonymous online support services remained largely unused despite high awareness.

Conclusions: The study challenges assumptions about psychological distress experienced by this workforce while showing that targeted, personalised workplace support strategies could be key to retention, offering evidence-based pathways for strengthening workforce sustainability.

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: 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: 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: 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.