Palliative MedicinePub Date : 2025-01-01Epub Date: 2024-10-19DOI: 10.1177/02692163241286110
Joshua Gallagher, Bárbara Antunes, James Sutton, Isla Kuhn, Michael P Kelly, Robbie Duschinsky, Stephen Barclay
{"title":"Self-care towards the end of life: A systematic review and narrative synthesis on access, quality and cost.","authors":"Joshua Gallagher, Bárbara Antunes, James Sutton, Isla Kuhn, Michael P Kelly, Robbie Duschinsky, Stephen Barclay","doi":"10.1177/02692163241286110","DOIUrl":"10.1177/02692163241286110","url":null,"abstract":"<p><strong>Background: </strong>Policy and practice encourages patients to engage in self-care, with individual patient management and remote monitoring of disease. Much is known of the moderate stage of chronic disease, without a clear understanding of how self-care applies towards the end of life.</p><p><strong>Aim: </strong>To review the current evidence on practices of self-care in life-limiting conditions and its impacts on healthcare utilisation, quality of life and associated costs.</p><p><strong>Design: </strong>We systematically searched 10 scientific databases (MEDLINE, CINAHL, Embase, PsycINFO, Cochrane Central, Cochrane Database of Systematic Reviews, Scopus, Sociological Abstracts, Social Work Abstracts and Health Management Information Consortium) from inception to October 2023 with citation and hand searching. A narrative synthesis was undertaken, with quality and relevance assessed using Gough's Weight of Evidence framework. Titles and abstracts were independently screened by three researchers.</p><p><strong>Results: </strong>Findings from 33 studies revealed self-care as increasingly burdensome or unfeasible towards the end of life, with patients delaying use of professional care. Self-care became increasingly burdensome for patients, carers and professionals as illness progressed. Self-monitoring may exacerbate hospitalisations as patients delayed seeking professional help until crises arose. Findings regarding quality were inconclusive, with some evidence suggesting that self-care can decrease care costs.</p><p><strong>Conclusions: </strong>This review has shown that research on self-care is an evolving area of study, with a current focus on acute care and hospitalisations. Future research should seek to provide a more complete account of the relation between self-care and non-acute care use, and quality, with further efforts to study self-care costs incurred through self-funding.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"53-69"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673300/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142472105","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2025-01-01Epub Date: 2024-10-10DOI: 10.1177/02692163241287640
Raditya Bagas Wicaksono, Amalia Muhaimin, Dick L Willems, Jeannette Pols
{"title":"<i>Utilizing intricate care networks</i>: An ethnography of patients and families navigating palliative care in a resource-limited setting.","authors":"Raditya Bagas Wicaksono, Amalia Muhaimin, Dick L Willems, Jeannette Pols","doi":"10.1177/02692163241287640","DOIUrl":"10.1177/02692163241287640","url":null,"abstract":"<p><strong>Background: </strong>The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial.</p><p><strong>Aim: </strong>To explore how patients and families navigate palliative care and the problems they experience.</p><p><strong>Design: </strong>An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis.</p><p><strong>Setting/participants: </strong>Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia.</p><p><strong>The analysis: </strong>Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices.</p><p><strong>Conclusions: </strong>Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"139-150"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142400936","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2025-01-01Epub Date: 2024-10-16DOI: 10.1177/02692163241287650
Philip D Austin, Wei Lee, Robyn Keall, Melanie R Lovell
{"title":"Efficacy of spiritual interventions in palliative care: An umbrella review of systematic reviews.","authors":"Philip D Austin, Wei Lee, Robyn Keall, Melanie R Lovell","doi":"10.1177/02692163241287650","DOIUrl":"10.1177/02692163241287650","url":null,"abstract":"<p><strong>Background: </strong>Spiritual care is increasingly recognised as an essential component of care in palliative settings. Given this growing body of literature on spiritual interventions, there is a need to systematically evaluate and synthesis findings from previous systematic reviews.</p><p><strong>Aim: </strong>To systematically synthesise the available evidence from systematic reviews concerning (a) the efficacy of spiritual care interventions and (b) the extent and nature of spiritual care interventions used in specialist palliative care settings.</p><p><strong>Methods: </strong>An umbrella review of systematic reviews was conducted in accordance with PROSPERO (CRD42024455147) and followed the Joanna Briggs Institute methodology for umbrella reviews.</p><p><strong>Data sources: </strong>Electronic databases (Ovid Medline, Embase, APA PsycINFO, Cochrane Database of Systematic Reviews, CINAHL and Web of Science) and references of accepted systematic reviews were searched for systematic reviews from inception to 2024. The AMSTAR-2 criteria was used to assess risk of bias within systematic reviews.</p><p><strong>Results: </strong>A toal of 27 reviews met the eligibility criteria and reported the effects of 14 different spiritual care interventions across 431 studies including 55,759 participants. Findings show that spiritual care interventions especially dignity therapy and life-review may be effective for improving outcomes including spiritual wellbeing, emotional symptoms, quality-of-life and physical symptoms in people receiving specialist palliative care. Under half of included reviews report follow-up data where only emotional symptoms and quality-of-life are reported at more than one time-point.</p><p><strong>Conclusion: </strong>Overall, spiritual care interventions have positive effects on spiritual wellbeing, quality of life and mood, compared to control conditions. Increased methodological rigour is needed to capture effect and duration of effect with spiritual care interventions at different phases of palliative care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"70-85"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673315/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142472102","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2025-01-01Epub Date: 2024-10-15DOI: 10.1177/02692163241286652
Joni Gilissen, Annelien Wendrich-Van Dael, Chris Gastmans, Luc Deliens, Robert Vander Stichele, Lara Pivodic, Lieve Van Den Block
{"title":"Mixed methods process evaluation of an advance care planning intervention among nursing home staff.","authors":"Joni Gilissen, Annelien Wendrich-Van Dael, Chris Gastmans, Luc Deliens, Robert Vander Stichele, Lara Pivodic, Lieve Van Den Block","doi":"10.1177/02692163241286652","DOIUrl":"10.1177/02692163241286652","url":null,"abstract":"<p><strong>Background: </strong>We developed the ACP+ intervention to support nursing home staff with implementation of advance care planning. While ACP+ was found to improve staff's self-efficacy, it did not change their knowledge about advance care planning.</p><p><strong>Aim: </strong>To describe the level of implementation, mechanisms of impact, and contextual factors.</p><p><strong>Design: </strong>Process evaluation embedded in a cluster randomized controlled trial in nursing homes (NCT03521206). Throughout and immediately following the 8-month ACP+ implementation, we collected weekly diaries, post-training surveys, attendance records, facility data, and conducted interviews (<i>n</i> = 32). We applied descriptive statistics and thematic analysis.</p><p><strong>Setting and participants: </strong>Management, staff, and ACP+ trainers in seven intervention homes.</p><p><strong>Results: </strong>Although most participants reported they valued ACP+, 33% of eligible staff across nursing homes attended training (range: 6%-69%) and only a few reported they felt ready to engage in actual care planning conversations. Half of all nursing homes adapted parts of the intervention (e.g., more/fewer/shortened training; assigning a coordinating role for practical management). Enough time to consolidate skills, and management support were key for staff engagement in advance care planning, and limited time and staff shortages were significant barriers. Staff reported increased awareness of the importance of advance care planning and felt there was a more systematic way of organizing advance care planning.</p><p><strong>Conclusions: </strong>There was limited staff engagement. Management ownership, clear roles, and collaborative practices may enhance nursing home advance care planning. Accessible and ongoing training for all staff, and ample practical learning opportunities are needed.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"113-125"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142472104","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2025-01-01Epub Date: 2024-12-04DOI: 10.1177/02692163241300867
Sofia C Zambrano, Martina Egloff, Valentina Gonzalez-Jaramillo, Andri Christen-Cevallos Rosero, Simon Allan, Pilar Barnestein-Fonseca, John Ellershaw, Claudia Fischer, Dagny Faksvåg Haugen, Urška Lunder, Marisa Martin-Rosello, Stephen Mason, Birgit Rasmussen, Valgerdur Sigurðardóttir, Judt Simon, Vilma A Tripodoro, Agnes van der Heide, Lia van Zuylen, Raymond Voltz, Carl Johan Fürst, Paula R Williamson, Steffen Eychmüller
{"title":"A core outcome set for best care for the dying person: Results of an international Delphi study and consensus meeting.","authors":"Sofia C Zambrano, Martina Egloff, Valentina Gonzalez-Jaramillo, Andri Christen-Cevallos Rosero, Simon Allan, Pilar Barnestein-Fonseca, John Ellershaw, Claudia Fischer, Dagny Faksvåg Haugen, Urška Lunder, Marisa Martin-Rosello, Stephen Mason, Birgit Rasmussen, Valgerdur Sigurðardóttir, Judt Simon, Vilma A Tripodoro, Agnes van der Heide, Lia van Zuylen, Raymond Voltz, Carl Johan Fürst, Paula R Williamson, Steffen Eychmüller","doi":"10.1177/02692163241300867","DOIUrl":"10.1177/02692163241300867","url":null,"abstract":"<p><strong>Background: </strong>Outcome measurement is essential to progress clinical practice and improve patient care.</p><p><strong>Aim: </strong>To develop a Core Outcome Set for best care for the dying person.</p><p><strong>Design: </strong>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.</p><p><strong>Setting/participants: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"163-175"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673312/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142771324","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2025-01-01Epub Date: 2024-12-08DOI: 10.1177/02692163241306667
Aileen Collier
{"title":"What can patient safety science do for palliative care? Bridging the gap.","authors":"Aileen Collier","doi":"10.1177/02692163241306667","DOIUrl":"10.1177/02692163241306667","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"4-6"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142795011","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2025-01-01Epub Date: 2024-10-23DOI: 10.1177/02692163241287639
Amy Brown, Sarah Yardley, Ben Bowers, Sally-Anne Francis, Lucy Bemand-Qureshi, Stuart Hellard, Antony Chuter, Andrew Carson-Stevens
{"title":"Multiple points of system failure underpin continuous subcutaneous infusion safety incidents in palliative care: A mixed methods analysis.","authors":"Amy Brown, Sarah Yardley, Ben Bowers, Sally-Anne Francis, Lucy Bemand-Qureshi, Stuart Hellard, Antony Chuter, Andrew Carson-Stevens","doi":"10.1177/02692163241287639","DOIUrl":"10.1177/02692163241287639","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Aims: </strong>(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.</p><p><strong>Design: </strong>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 <b>P</b>at<b>I</b>ent <b>SA</b>fety (PISA) classification system and qualitative narrative analysis of free-text reports.</p><p><strong>Setting/participants: </strong>Palliative medication incidents (<i>n</i> = 7506) reported to the National Reporting and Learning System, England and Wales (2016-2021).</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"7-21"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673304/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142505532","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2025-01-01Epub Date: 2024-11-08DOI: 10.1177/02692163241291343
Claudia Virdun, Elise Button, Jane L Phillips, Catherine H Saunders, Patsy Yates, Tim Luckett
{"title":"Feasibility and acceptability of the brief patient-reported experience measure consideRATE within the hospital setting for patients with palliative care needs, their families/carers and clinicians.","authors":"Claudia Virdun, Elise Button, Jane L Phillips, Catherine H Saunders, Patsy Yates, Tim Luckett","doi":"10.1177/02692163241291343","DOIUrl":"10.1177/02692163241291343","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Aim: </strong>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.</p><p><strong>Design: </strong>A prospective study using: 1) PREM administration, screening log and field note completion; and; 2) a focus group with clinicians.</p><p><strong>Setting/participants: </strong>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<sup>TM</sup> criteria), their carers and multidisciplinary clinicians (including clinical managers).</p><p><strong>Results: </strong><i>Feasibility</i>: A 71% response rate was achieved (<i>n</i> = 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 (<i>n</i> = 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 (<i>n</i> = 27, 34%). Score distribution varied across response options, albeit with a positive skew towards 'very good' and 'good'. Two thirds of respondents (<i>n</i> = 50, 62.5%) provided ⩾1 free-text response. <i>Acceptability</i>: Clinicians valued consideRATE data noting feedback needed to be: accessible, supported by free-text and responsive to local contexts.</p><p><strong>Conclusions: </strong>It is feasible to implement consideRATE for inpatients with palliative care needs. Clinicians note consideRATE data is acceptable in informing improvement foci.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"151-162"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673302/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625266","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2025-01-01Epub Date: 2024-12-08DOI: 10.1177/02692163241302678
Oliver Clabburn, Tracey Stone, Naheed Anwar, Taskin Saleem, Salim Khan, Verena Hewat, Usha Grieve, Lesel Dawson, Michelle Farr, Sabi Redwood, Lucy E Selman
{"title":"Co-production in practice: A qualitative study of the development of advance care planning workshops for South Asian elders.","authors":"Oliver Clabburn, Tracey Stone, Naheed Anwar, Taskin Saleem, Salim Khan, Verena Hewat, Usha Grieve, Lesel Dawson, Michelle Farr, Sabi Redwood, Lucy E Selman","doi":"10.1177/02692163241302678","DOIUrl":"10.1177/02692163241302678","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Aim: </strong>To explore and describe how two charities used co-production to develop and deliver community-based advance care planning workshops for South Asian elders.</p><p><strong>Design: </strong>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.</p><p><strong>Setting/participants: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"126-138"},"PeriodicalIF":3.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673291/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142795010","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative MedicinePub Date : 2024-12-01Epub Date: 2024-10-10DOI: 10.1177/02692163241286648
Tim Biesbrouck, Dine Ad Jennes, Nele Van Den Noortgate, Maaike L De Roo
{"title":"Pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life in older people: A systematic review.","authors":"Tim Biesbrouck, Dine Ad Jennes, Nele Van Den Noortgate, Maaike L De Roo","doi":"10.1177/02692163241286648","DOIUrl":"10.1177/02692163241286648","url":null,"abstract":"<p><strong>Background: </strong>Evidence based guidelines for treatment of physical symptoms during the last days of life in older people are not available.</p><p><strong>Aim: </strong>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.</p><p><strong>Design: </strong>A systematic review was conducted (PROSPERO #CRD42023406100) and reported in accordance with PRISMA guidelines.</p><p><strong>Data sources: </strong>MEDLINE and EMBASE were searched from inception till March 2023, together with national and international guideline databases.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1088-1104"},"PeriodicalIF":3.6,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142400946","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}