Palliative Medicine最新文献

Background: Outcome measurement is essential to progress clinical practice and improve patient care.

Aim: To develop a Core Outcome Set for best care for the dying person.

Design: We followed the Core Outcome Measures in Effectiveness Trials (COMET) Initiative guidelines, which involved identifying potential outcomes via a systematic literature review (n = 619 papers) and from participants in the "iLIVE" project (10 countries: 101 patients, 37 family members, 63 clinicians), followed by a two-round Delphi study, and a consensus meeting.

Setting/participants: Clinicians, researchers, family members, and patient representatives from 20 countries participated in the Delphi Rounds 1 (n = 462) and 2 (n = 355). Thirty-two participants attended the consensus meeting.

Results: From the systematic review and the cohort study we identified 256 and 238 outcomes respectively, from which we extracted a 52-outcome list covering areas related to the patients' physical, psychosocial, and spiritual dimensions, family support, place of care and care delivery, relational aspects of care, and general concepts. A preliminary 13-outcome list reached consensus during the Delphi. At the consensus meeting, a 14-item Core Outcome Set was ratified by the participants.

Conclusions: This study involved a large and diverse sample of key stakeholders in defining the core outcome set for best care for the dying person, focusing on the last days of life. By actively integrating the perspectives of family carers and patient representatives from various cultural backgrounds this Core Outcome Set enriches our understanding of essential elements of care for the dying and provides a solid foundation for advancing quality of end-of-life care.

Background: About 25% of palliative medication incidents involve continuous subcutaneous infusions. Complex structural and human factor issues make these risk-prone interventions. Detailed analysis of how this safety-critical care can be improved has not been undertaken. Understanding context, contributory factors and events leading to incidents is essential.

Aims: (1) Understand continuous subcutaneous infusion safety incidents and their impact on patients and families; (2) Identify targets for system improvements by learning from recurrent events and contributory factors.

Design: Following systematic identification and stratification by degree of harm, a mixed methods analysis of palliative medication incidents involving continuous subcutaneous infusions comprising quantitative descriptive analysis using the PatIent SAfety (PISA) classification system and qualitative narrative analysis of free-text reports.

Setting/participants: Palliative medication incidents (n = 7506) reported to the National Reporting and Learning System, England and Wales (2016-2021).

Results: About 1317/7506 incidents involved continuous subcutaneous infusions with 943 (72%) detailing harms. Primary incidents (most proximal to patient outcomes) leading to inappropriate medication use (including not using medication when it was needed) were underpinned by breakdowns in three major medication processes: monitoring and supply (405, 31%), administration (383, 29%) and prescribing (268, 20%). Recurring contributory factors included discontinuity of care within and between settings, inadequate time, inadequate staffing and unfamiliarity with protocols. Psychological harms for patients and families were identified.

Conclusions: System infrastructure is needed to enable timely supply of medication and equipment, effective coordinated use of continuous subcutaneous infusions, communication and continuity of care. Training is needed to improve incident descriptions so these pinpoint precise targets for safer care.

Background: Supporting clinical teams to improve care for inpatients with palliative care needs and their carers is a known priority. Patient reported experience measures (PREMs) may assist in improvement work. Evidence about how to collect and feedback PREM data for this population and context is required.

Aim: To determine the feasibility of implementing a brief, validated PREM, consideRATE and appraise its acceptability as perceived by inpatients with palliative care needs, their carers and clinicians.

Design: A prospective study using: 1) PREM administration, screening log and field note completion; and; 2) a focus group with clinicians.

Setting/participants: Eligible participants recruited from three wards (cancer care and internal medicine) of an Australian tertiary metropolitan hospital. Participants included patients screened to have palliative care needs (using the SPICT^TM criteria), their carers and multidisciplinary clinicians (including clinical managers).

Results: Feasibility: A 71% response rate was achieved (n = 80 from 112 eligible patients approached). Mean screening time to inform eligible patients for PREM completion was 7.5 min. More than half of eligible participants (n = 47, 59%) opted for electronic completion of consideRATE and mean completion time was 6.12 min. A third of participants required assistance for PREM completion (n = 27, 34%). Score distribution varied across response options, albeit with a positive skew towards 'very good' and 'good'. Two thirds of respondents (n = 50, 62.5%) provided ⩾1 free-text response. Acceptability: Clinicians valued consideRATE data noting feedback needed to be: accessible, supported by free-text and responsive to local contexts.

Conclusions: It is feasible to implement consideRATE for inpatients with palliative care needs. Clinicians note consideRATE data is acceptable in informing improvement foci.

Background: Advance care planning can improve patient and family outcomes; however, minoritised ethnic communities experience access barriers. Co-production offers a way to design culturally appropriate information and support, but evidence is needed to understand its implementation in palliative care.

Aim: To explore and describe how two charities used co-production to develop and deliver community-based advance care planning workshops for South Asian elders.

Design: Workshops were co-produced by two charities. In parallel, a multi-component qualitative study was conducted comprising workshop observations, semi-structured interviews with charity staff and focus groups with workshop participants, facilitated by community co-researchers in English, Hindi, Urdu and Punjabi. Data were analysed using thematic analysis.

Setting/participants: Four workshops were held in a London (UK) community setting (each with 5-30 participants); four interviews were conducted with charity staff members, and three focus groups with 16 workshop participants.

Results: We describe three main themes: Co-production in action: organic origins and trusted foundations; Co-production processes embedded in equal partnership; and Impact of the workshops. Fundamental to co-production processes was the community-led approach of the local charity, the trust of the local South Asian community and the relationship between the charities, including transparent communication and mutual respect. The workshops were reported to be useful and enjoyable, engendering a sense of agency and connection and helped disseminate awareness and knowledge through the community, benefitting the wider system.

Conclusions: Co-production can help widen access to advance care planning. Findings offer an in-depth example of co-production-in-action to inform intervention development and research.

Background: Evidence based guidelines for treatment of physical symptoms during the last days of life in older people are not available.

Aim: We wanted to synthesize the existing evidence on the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting during the last days of life in older people to develop recommendations that can help guide clinical practice.

Design: A systematic review was conducted (PROSPERO #CRD42023406100) and reported in accordance with PRISMA guidelines.

Data sources: MEDLINE and EMBASE were searched from inception till March 2023, together with national and international guideline databases.

Results: Four predominantly descriptive studies on opioid use were included for the treatment of pain and four for dyspnea, without clear evidence for the choice of one specific opioid, nor a specific opioid dose. For death rattle, five randomized controlled trials and two retrospective studies were included. These provide evidence for the prophylactic treatment of death rattle with hyoscine butylbromide. For fever, nausea, and vomiting, no articles met the inclusion criteria.

Conclusion: Limited evidence exists to guide the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life of older people. Other than the use of opioids for treatment of pain and dyspnea and prophylactic administration of hyoscine butylbromide to decrease the likelihood of developing death rattle, no specific recommendations can be formulated for use in clinical practice. This demonstrates the challenging nature of research in the last days of life of older people, despite its pressing need.

Background: Rural areas frequently encounter restricted access to healthcare and end-of-life services. Given current pressing realities, understanding their unique perspectives on what constitutes a good death is essential. Existing research has largely overlooked the voices of rural residents.

Aim: To obtain a more comprehensive understanding of rural residents' expectations regarding a good death.

Design: A meta-synthesis. By exploring the logic within relevant content, the stages of the life course serve as the framework for integration.

Data sources: PubMed, Web of Science Core Collection, Embase, Cochrane Library, CINAHL (EBSCO), PsycINFO (EBSCO), China National Knowledge Infrastructure (CNKI), WanFang, and China Biology Medicine disc (CBM) were systematically searched from their inception to May 2023.

Result: Of the 1100 articles retrieved, 8 studies were included. This paper outlines "the path to a rural good death": (1) When death is perceived as distant: acknowledge its inevitability while striving to achieve a successful and complete life journey. (2) As death approaches: maintain composure and have the capacity and support to face it. (3) When death truly arrives: depart in an envisioned scenario. (4) What's left behind: be properly arranged.

Conclusion: The essential characteristics of a rural good death align with previous interpretations. However, distinct aspects emerge: communities play a significant role, characterized by reciprocal relationships; the role of medicine is less emphasized; and "rurality" deeply shapes residents' expectations of a good death. The pathway to a good death presented in this article is aspirational, requiring collaborative efforts to make it a tangible reality.

Background: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation.

Aim: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems.

Design: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation.

Participants: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities).

Results: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated.

Conclusions: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation.

Background: Perinatal palliative care can offer compassionate support to families following diagnosis of a life-limiting illness, to enable them to make valued choices and the most of the time that they have with their newborn. However, home birth is usually only offered in low-risk pregnancies.

Case: A couple who received an antenatal diagnosis of hypoplastic left heart syndrome and who had made a plan to provide palliative care to their baby after birth requested the option of a home birth.

Possible courses of action: Recommend birth at hospital or explore the possibility of a home birth with perinatal palliative care support.

Formulation of a plan: Multidisciplinary discussion and collaboration enabled a plan for home birth to be made which anticipated potential complications.

Outcome: The baby was born at home and died on day 5 of life receiving outreach nursing, paediatric and palliative care support and buccal and oral opioids for symptom management. We include reflections from the family on the importance of this experience.

Lessons: We provide a list of potential criteria for considering home birth in the setting of perinatal palliative care.

View: Facilitating a home birth in the setting of perinatal palliative care is an option that can be hugely valued by families, but this service may be practically difficult to deliver in many contexts. Further research is needed to understand the preferences of women and families receiving perinatal palliative care.

Background: Adequate death preparation positively influences families' experience before death and during bereavement. However, how to prepare families in non-Western cultures has received scant attention.

Aim: To explore family caregivers' experiences in preparing for a relative's death in specialist palliative care in Taiwan.

Design: A qualitative study employing reflexive thematic analysis of data collected from semi-structured interviews was conducted.

Setting/participants: Twenty-two family caregivers from seven hospitals participated.

Results: The overarching theme was 'getting everything right to have no regrets between the dead and the living'. We developed two themes to explain preparations for the time surrounding and after the death, including the deceased' afterlife: (1) 'having a good ending but not the end of the relationship', which addresses preparations for the death itself, the funeral, the afterlife and maintaining connections and (2) 'using religious beliefs and cultural norms to guide preparation', which explores perceptions of a good death, including refrain from strong emotions before and after the death.

Conclusion: Funeral arrangements, enhancing the deceased's afterlife and maintaining connections to the deceased are crucial for families' experiences which can be impacted by actions they take as they prepare for the death. A culturally appropriate death is beneficial for the dying relative which includes preparing to not show strong emotions during and after the death. These insights inform the importance of the cultural context in death preparation in Taiwan and provide perspectives for palliative care beyond Western culture, potentially benefiting Chinese populations, predominantly East Asian and Buddhist societies.