Palliative Medicine最新文献

Background: Cannabis is the most commonly used illicit drug worldwide. Although evidence for its medicinal use is limited, interest in medicinal cannabis is increasing. There is little understanding of cannabis use and attitudes among patients with cancer.

Aim: To characterise the perception and practices of patients with cancer towards cannabis use, including information sources, reasons for use, perceived safety and comfort discussing cannabis use with their oncologists.

Design: Single site, anonymous survey based cross-sectional cohort study.

Setting/participants: Adult patients with cancer from a metropolitan hospital were recruited via consecutive sampling from oncology outpatient clinics between November 2020 and November 2021.

Results: Of 272 respondents (84% response rate), 60% (n = 157) were greater than 61 years of age and 56% (n = 146) identified as male. The principal source of information regarding cannabis use was the internet and media (n = 95; 39%). The main reported reason for interest was to improve the side effects of cancer treatments (n = 135; 71%). Of the 27 cannabis users who responded, 90% perceived cannabis as safe. Among non-cannabis users, 73% (n = 159) were interested in cannabis use. 19% (n = 40) of non-cannabis users did not feel comfortable asking their oncologist about cannabis use and 42% (n = 13) of cannabis users did not inform their oncologists of their use.

Conclusions: There is great interest and positive attitudes towards cannabis use among patients with cancer. Health professionals should be proactive in discussing cannabis use as patients may seek information about cannabis elsewhere.

Background: The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) was developed to assess symptoms and concerns comprehensively for people with dementia. There is a high demand for comprehensive assessment of people with dementia in China.

Aim: To translate and culturally adapt the IPOS-Dem into Chinese.

Design: Conceptual equivalence, forward and backward translations, and expert review were performed to develop a prototype Chinese version. Two rounds of cognitive interviews were conducted to ensure the items and scoring format were clearly expressed in the Chinese version.

Setting/participants: Professionals, including a physician, a nurse, a linguistic researcher and a humanities researcher, were involved in the prototype Chinese version development. A purposive sample of 12 health care professionals working in three Chinese nursing homes participated in the cognitive interviewing.

Results: The Chinese version was perceived as clinically useful. Challenges arose regarding comprehension of some items due to difficulties in translating the precise meanings. These included 'Drowsiness (sleepiness)', 'Difficulty communicating' and 'Do you think s/he felt at peace?'. Considering how a symptom affects an individual presented was also challenging for respondents, as they needed to judge whether the symptom was present and/or causing distress. Selecting the appropriate term to name the measure elucidated the current understanding of dementia and palliative care in China, both of which remain poorly understood.

Conclusion: This study highlighted the importance of cultural adaptation in conveying meanings across cultures. Most items were translatable and conceptually equivalent. The term 'at peace' and the concept of 'being affected' generated the most challenges in comprehension and judgement.

Background: Palliative sedation involves using sedatives to reduce consciousness until death. Though common in end-of-life care, it remains complex and controversial, with unclear quality parameters and limited guidance for improvement. A comprehensive overview of elements that reflect quality in palliative sedation is currently missing.

Aim: To identify quality reflecting elements for palliative sedation reported in peer-reviewed, indexed and gray literature.

Design: Scoping review using Levac et al.'s methodological framework, including systematic searching, screening and narrative synthesis.

Data sources: Academic databases with indexed sources (MEDLINE, EMBASE, CENTRAL, CINAHL, PsycINFO) and databases also containing gray literature (MEDNAR, Web of Science) were searched between February and December 2023 for sources with primary data published after 2009, without restrictions on population or study design.

Results: Among the 60 sources analyzed, 157 elements reflecting palliative sedation quality were identified and thematized into 22 themes and four overarching domains: (1) process elements of decision-making such as indication, proximity to death, timing, patient involvement, proactiveness, patient support, family involvement, artificial nutrition and hydration; (2) process elements of performance, such as level of sedation, medication use, monitoring, duration, care continuation, family support; (3) outcome elements covering patient comfort, family well-being, family satisfaction, professionals' well-being and satisfaction; (4) process elements of collaboration and documentation.

Conclusion: This scoping review found a broad range of elements reflecting palliative sedation quality - beyond clinical performance, sedation outcomes or patient level elements alone. These insights can inform the development of a core set of indicators to support quality monitoring in palliative sedation.

Background: Emotional and psychosocial support is vital for children with life-limiting or life-threatening conditions and their families. Memory-making interventions, which create lasting memories, are gaining recognition, yet a comprehensive synthesis of their efficacy and scope is lacking.

Aim: To systematically review and synthesize evidence on memory-making interventions for children and young people aged 0-19 years with life-threatening or life-limiting conditions and their families in paediatric palliative and bereavement contexts.

Design: A systematic review conducted in accordance with Joanna Briggs Institute guidance for mixed-methods reviews and reported using PRISMA guidelines. Narrative synthesis was used to identify key themes related to the effectiveness, implementation and family experiences of these interventions.

Data sources: PubMed, EMBASE, CINAHL, PsycINFO, Web of Science, Cochrane Library and Scopus.

Results: Eleven articles met the inclusion criteria, identifying three categories of memory-making interventions: storytelling-based, art-based legacy and physical keepsake creations. While statistical significance was limited, studies suggested small to moderate psychosocial benefits. Narrative synthesis identified four key themes: emotional expression and comfort; family connection and communication; memory preservation and personalization; and grieving support and continued bonds. Digital storytelling was the most common intervention. Families emphasized the need for personalized and culturally sensitive approaches to improve engagement and relevance.

Conclusions: Memory-making interventions provide valuable emotional and psychosocial benefits for children and young people and their families in paediatric palliative and bereavement contexts. Tailored, well-supported interventions can strengthen resilience and well-being. Addressing challenges like technological barriers and cultural sensitivities may optimize these interventions and improve care quality.

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.