PROGRESS IN PALLIATIVE CARE最新文献

{"title":"Palliative Care and Thanatechnology","authors":"Jason Mills","doi":"10.1080/09699260.2022.2087270","DOIUrl":"https://doi.org/10.1080/09699260.2022.2087270","url":null,"abstract":"The field of palliative care continues to grow and evolve over time, according to various societal and technological contexts. The recent publication of the Oxford Textbook of Public Health Palliative Care represents a pivotal step in the evolution of the field, shining a light on more inclusive and populationbased public health approaches to reframe death, dying, loss and caregiving. It also introduces preliminary conceptual work intended to bridge often perceived divides between increasing technological advances and the social model of public health palliative care. This points to the need for further consideration of the nexus between palliative care and thanatechnology. The term thanatechnology was coined by Sofka in the 1990s with reference to then current and emerging communication technologies that could be used to facilitate death education, grief counselling and thanatology research. Sofka and colleagues later described it as ‘a conduit for living, dying, and grieving in contemporary society’. Over the following decade, the use of various digital technologies spread widely to influence nearly all aspects of modern life, including a variety of social media platforms used in both professional and non-professional contexts. However, implications of this growing use, from a thanatological perspective, may not be obvious to users. Mortal as human existence is, digital footprints are not necessarily washed away in the sands of time. Indeed, it has been highlighted that social media platforms are ‘full of dead people’., It is these types of digital death and digital afterlife that characterize thanatechnologies in their capacity to maintain humanity through, for example, memorialization and the conscious cultivation of digital legacies to be left behind. For the bereaved, some may find a perpetual online presence comforting whilst for others this may cause distress; importantly, instructions can be issued in advance to accommodate individual preferences but users need to be aware of how to do this. Recognition of the need to support people in making informed choices about options available can be found in guides developed for the general population by national palliative care organizations. See for example, Palliative Care Australia’s ‘Guide to a social media afterlife’ (https://palliativecare.org. au/wp-content/uploads/2015/08/PCA001_Social-Media -Guide_ONLINE.pdf). Apart from social media presence, other key examples of using thanatechnology include the consideration of digital assets and use of end-of-life planning software (see for example, https://www.mywishes.co.uk). The remit of palliative care includes the promotion of holistic health and wellbeing, during periods both before and after death, for everyone living with dying, loss and bereavement. It is not surprising, then, that both professional and informal caregivers have adopted the use of digital technologies to enable care and achieve personalized goals of care. Although not labell","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"203 - 204"},"PeriodicalIF":1.7,"publicationDate":"2022-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43640270","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A novel nurse-coordinated home care model for palliative care in advanced cancer: A pilot interventional study from suburban Mumbai","authors":"A. Ghoshal, A. Damani, J. Deodhar, L. Quadros, K. Ganpathy, M. Muckaden","doi":"10.1080/09699260.2022.2081440","DOIUrl":"https://doi.org/10.1080/09699260.2022.2081440","url":null,"abstract":"Background: Demand for home-based health care services has increased considerably in India. Traditionally, home-based care services are physician-led which puts pressure on the understaffed healthcare sector. This study aims to pilot a new model, the Nurse coordinated Home Care (NCHC) service in suburban Mumbai (India). Methods: In this pilot interventional study, 101 patients with advanced cancer along with their caregivers were enrolled over 16 months. The nurse coordinator (NC) administered study questionnaires every month. Follow-up visits were based on case severity. Local general practitioners (LGPs) were identified and involved in patient care. Results: Severe Edmonton Symptom Assessment System (ESAS) symptoms were reduced by >2 points in 4 out of 7 instances (57.1%). The number of physician visits was lesser than NC visits (162 vs 341), home deaths were more than hospital deaths (57 vs 14), study retention rate was 99%, 87.5% LGPs participated, 98% of questionnaires were returned. Satisfaction on FAMCARE-2 showed a maximum score of ‘Satisfied’, caregiver burden in ZBI was little/no for 95%, mean scores for ESAS pain was 2, PPSv2 score was 70%−100% for the majority, mean scores on EORTC QLQ-C15-PAL were 77 - Functional scales, 21.5 - Symptom scales, and 64.3 - Global health status/quality of life. NCHC median intervention costs per patient were less than usual care (₹2049.50 vs ₹11490.09). Conclusion: A home care service model that includes nurse coordination and case management streamlines access to healthcare services and resources while reducing the cost of care along with reduced caregiver burden, with increased levels of satisfaction.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"11 - 17"},"PeriodicalIF":1.7,"publicationDate":"2022-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47580632","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Facilitators of and barriers to continuity with GPs in primary palliative cancer care: A mixed-methods systematic review","authors":"Emilie Couchman, S. Ejegi-Memeh, S. Mitchell, C. Gardiner","doi":"10.1080/09699260.2022.2074126","DOIUrl":"https://doi.org/10.1080/09699260.2022.2074126","url":null,"abstract":"Background: General practitioners (GPs) have a key role in palliative care provision for patients with advanced cancer. Continuity is valued by patients with such needs but is limited within current primary care systems. Exploration of the facilitators of and barriers to continuity in this complex context is required. Aim: To identify facilitators of and barriers to continuity with GPs in primary palliative care among people with advanced cancer and/or their close persons. Design: Mixed-methods systematic review with content and thematic analyses. Data sources: Keyword searches were carried out in five databases (Ovid MEDLINE(R), Ovid EMBASE(R), CINAHL, Web of Science, and Cochrane), policy documents and grey literature search engines in December 2020. Evidence was reviewed using relevant quality appraisal tools; data were extracted and tabulated. Findings were reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement, and the review was prospectively registered on PROSPERO. Results: Seventeen studies were included. Six studies originated from the UK; six from Europe; three from Canada; and two from Australia. Two studies were mixed-methods, four presented quantitative data, and 11 papers reported on qualitative studies. Four themes were developed: (1) the role of GPs in facilitating continuity; (2) the role of patients and/or close persons in facilitating continuity; (3) changing needs throughout the disease trajectory; and (4) the organisational context in primary care. Conclusions: Facilitators of and barriers to continuity in primary palliative care are outlined. Further research is required to explore how patients and/or their close persons experience continuity in primary palliative care. Specifically, the work required of them to achieve their desired level of continuity, and their capacity for action in this context, needs further attention.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"31 1","pages":"18 - 36"},"PeriodicalIF":1.7,"publicationDate":"2022-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44229912","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"National survey of sibling support services in children’s hospitals","authors":"Kim Mooney-Doyle, Quinn Franklin, Samantha Burley, Maggie C. Root, T. Akard","doi":"10.1080/09699260.2022.2094173","DOIUrl":"https://doi.org/10.1080/09699260.2022.2094173","url":null,"abstract":"Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support services for siblings are critical to promote positive outcomes and decrease negative consequences and align with parents’ desires to support all of their children. These include services offered to the sibling or family to provide comfort or enhance the quality of life during a child’s serious illness. Despite national standards, sibling support services are often difficult for families to access. The aim of this study was to describe sibling support activities provided through teaching children’s hospitals across the United States using a cross-sectional, descriptive design. Results indicate most hospitals surveyed offer sibling support services that focus on sibling education about the illness; parent education on how to anticipate the siblings needs; and activities for families to do together, yet face barriers to delivery. Services focused directly on siblings and actively supporting their adaptation were least often provided and less than half reported screening siblings for psychosocial distress. Findings suggest that sibling support services may be an important resource to minimize distress and promote adaptation for siblings. This description of current and available sibling support services is an important starting point for enhancing services, policies, and institutions that fully envelope siblings into patient- and family-centered care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"341 - 348"},"PeriodicalIF":1.7,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44938424","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The writing was on the wall: Decision making near the end of life in advanced liver disease","authors":"S. Kotha, P. Berry","doi":"10.1080/09699260.2022.2067702","DOIUrl":"https://doi.org/10.1080/09699260.2022.2067702","url":null,"abstract":"The important role of palliative care in the management of end stage liver disease is now well established, but a number of barriers related to physicians and patients may still impede timely referral. In this article, an anonymised patient’s clinical course is described, one which ends in what most would regard as a ‘bad death’. This despite the fact that his history clearly indicated a poor prognosis. The reasons behind the clinical decision to escalate care are explored in light of current evidence. These include increasing optimism around the utility of organ support, lack of consensus around use of prognostic scores, examples of liberal approaches to transplantation for alcoholic hepatitis and acute-on-chronic liver disease, the transplant imperative, and patient preference. A case is made that if a patient has expressed a clear preference to pursue life-sustaining treatment, there will be occasions where a ‘bad death’ is morally acceptable. It is concluded that palliative care should be integral to the care of patients with advanced liver disease, but that hepatologists should be upskilled and become more comfortable around clinical uncertainty.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"349 - 355"},"PeriodicalIF":1.7,"publicationDate":"2022-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43601545","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transition to adult services for young people suffering from life-limiting neurodevelopmental disabilities: A case series","authors":"H. Cheng, Chak-ho Li, K. Yeung, Tracy W. Lee, K. Chan, Wai Kei Vicky Chung, Dany Hsu, O. Chan, Ruby Chui, C. Man, K. Cheung, C. Wong, M. P. Wu, Chun-hung Chan","doi":"10.1080/09699260.2022.2066270","DOIUrl":"https://doi.org/10.1080/09699260.2022.2066270","url":null,"abstract":"Due to advances in medical care, a growing number of young people with life-limiting neurodevelopmental disabilities (LLNDDs) are now surviving into adulthood. However, the traditional model of care between pediatrics and adult medicine was fragmented and did not match their multi-facet needs. A special working group that includes pediatricians, adult palliative care team, and representatives from non-governmental organizations (NGOs) was formed, providing a period of joint care of 12–24 months before transitioning to the adult palliative care team. A retrospective case series of 19 young adults with LLNDDs, recorded during the July 2015–June 2020 period at the study institution is presented. Recruited patients’ age ranged from 18 to 38 (mean 26.2 [SD 6.1]). Majority of them (n = 14) require residential care at long-term care facilities (LTCFs) and high level of nursing care, which include artificial nutrition (n = 8) and home ventilator (n = 5). All patients referred to our palliative care (PC) program were engaged in a structured advance care planning (ACP) process. Seventeen patients (89.5%) had their Do-Not-Resuscitate (DNR) directives in place and two mentally competent patients completed their own advance directive (AD). All deceased (n = 10) had their DNR directives being honored. In conclusion, the palliative care needs of young adults suffering from LLNDDs should be properly addressed and implementation of a joint transitional care model between pediatrics and adult PC team is one possible method. Future research should encompass a better care model that addresses the multi-facet needs of young people suffering from LLNDDs, especially the transition from pediatrics to adult medicine.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"364 - 370"},"PeriodicalIF":1.7,"publicationDate":"2022-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43636927","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Nurses’ perception regarding barriers of palliative care provision for people with severe mental illness: A qualitative study","authors":"S. Saber, M. Mardani-Hamooleh, N. Seyedfatemi, H. Hamidi","doi":"10.1080/09699260.2022.2053394","DOIUrl":"https://doi.org/10.1080/09699260.2022.2053394","url":null,"abstract":"It has been postulated that a palliative approach in psychiatric ward has the potential to increase the quality of care for people with severe mental illness (SMI). This study aimed to explain nurses’ perception about barriers to provision of palliative care for people with SMI. In this qualitative content analysis study, semi-structured interviews have been conducted with 26 Iranian nurses. Two categories and four subcategories were formed. The categories included poor organizational and professional infrastructure, and inadequate patient/family follow-up system. The first category includes lack of specialists who provide palliative care, lack of palliative wards, and lack of teamwork. The second category contained erroneous cultural beliefs and lack of attention to the role of family. The society must deal with the cultural taboos associated with mental illness through cultural-based interventions. Furthermore, attention should be paid to the role of families in palliative care. The health system should try to build relevant palliative care units to facilitate the provision of it for people with SMI.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"288 - 294"},"PeriodicalIF":1.7,"publicationDate":"2022-04-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45687714","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Palliative care: walking through the primary school gate","authors":"C. Kennedy","doi":"10.1080/09699260.2022.2058308","DOIUrl":"https://doi.org/10.1080/09699260.2022.2058308","url":null,"abstract":"The recent literature highlights the need to improve access and extend the reach of palliative care beyond the confines of traditional clinical settings. Following Abel and colleagues, a reimagining of palliative care to address these concerns will require the promotion of public health partnerships and community participation including members of school communities in their experience of grief, loss and bereavement care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"137 - 140"},"PeriodicalIF":1.7,"publicationDate":"2022-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45908967","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Do not resuscitate orders in the time of COVID-19: Exploring media representations and implications for public and professional understandings","authors":"J. Bird, F. Wilson","doi":"10.1080/09699260.2022.2052505","DOIUrl":"https://doi.org/10.1080/09699260.2022.2052505","url":null,"abstract":"Context: During the COVID-19 pandemic, the UK press featured headlines that heightened concerns around Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders, particularly the use of ‘blanket’ DNACPR orders applied to older people in care settings. The portrayal of DNACPR may impact professional and public understandings with implications for end-of-life care. Objectives: To explore the portrayal of DNACPR orders in the general and academic press and consider implications for public and professional understandings and practice. Method: Academic papers and articles published in the general press during the first wave of the COVID-19 pandemic in the UK were retrieved. Those pertaining to the use of DNACPR orders were analysed thematically. Results: Analysis of 179 media articles and 11 professional commentaries identified mixed understandings of DNACPR as indicated within three themes: rationing of acute services, championing autonomy in DNACPR decisions, and communication and trust. The call to ‘protect the NHS’ marginalised palliative and social care services with DNACPR constructed as a rationing tool. This led to ethical challenges around autonomy, DNACPR decisions, communication and trust. Conclusions: Media coverage of DNACPR orders was contentious and raised questions around the value of life and quality of dying, particularly for vulnerable individuals. DNACPR orders were conflated with frailty, futility and rationing of acute services and the marginalisation of palliative care. Nevertheless, media outputs stimulated advocacy and support for human rights and autonomy. However, it is unclear what the legacy will be for public and professional understandings of advance care planning and the quality of dying.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"269 - 280"},"PeriodicalIF":1.7,"publicationDate":"2022-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43675323","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Challenging decision-making at the end of life in an SCLC patient with severe paraneoplasia and immune CPI-toxicity: A case report","authors":"D. Hamberger, M. Villalobos","doi":"10.1080/09699260.2022.2052504","DOIUrl":"https://doi.org/10.1080/09699260.2022.2052504","url":null,"abstract":"Background In advanced tumour disease, the situation of patients may worsen due to paraneoplastic syndromes and the side effects of new therapies. In small cell lung cancer, immunotherapy has shown an improvement in outcomes for the first time in decades. Still, the prognosis remains dismal, challenging supportive care for new treatment side effects and the shared decision-making process at the end of life. Case presentation we present a patient with advanced small cell lung cancer. His situation is complicated by ectopic ACTH production with severe hypokalaemia and immune-related myocarditis after treatment with atezolizumab, leading to changing ECG findings and bradycardia. Conclusions At the end of life, priorities can shift, so medical treatments must be critically questioned regarding their benefit for the patient. New oncological treatment options may hazard the timely integration of palliative care and thus, lead to more extended hospital stays and more aggressive care. The challenging shared decision-making is time-consuming crucial in achieving goal-concordant care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"305 - 309"},"PeriodicalIF":1.7,"publicationDate":"2022-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45718361","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}