Library Services Musgrove Park and Somerset Partnership
Current Awareness End of Life This monthly Current Awareness Bulletin is produced by the Library, Musgrove Park Academy to provide staff with a range of resources focussing on end of life care. It includes recently published guidelines and research articles, news and policy items.
This guide provides a selection of resources relevant to the subject area and is not intended to be a comprehensive list. All websites have been evaluated and details are correct at the time of publications. Details correct at time of going to print. Please note that resources are continuously updated. For further help or guidance, please contact a member of library staff.
This guide has been compiled by: Jess Pawley Senior Library Assistant Musgrove Park Hospital Library Service jessica.pawley@tst.nhs.uk Issue 2 February/March 2016
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Contents Click on a section title to navigate contents Page Recent journal articles
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Books
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Cochrane Systematic Reviews
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Guidelines
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UpToDate
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Reports, publications and resources
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Topic Alerts and Updates
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Training & Networking Opportunities, Conferences, Events
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Literature search service
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Training and Athens
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Library contact details: Library Musgrove Park Academy Musgrove Park Hospital Taunton Somerset TA1 5DA Tel: 01823 34 (2433) Fax: 01823 34 (2434) Email: library@tst.nhs.uk Blog: http://librarymph.wordpress.com @musgrovesompar
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RECENT JOURNAL ARTICLES BACK TO TOP This is a list of journal articles on the topic of end of life. Some articles are available in the library or on-line via an OpenAthens password by following the full-text link. If you would like an article which is not available as full-text then please contact library staff. Please note that abstracts are not always available for all articles. ________________________________________ Title: The impact of a new public health approach to end-of-life care: A systematic review. Citation: Palliative medicine, Mar 2016, vol. 30, no. 3, p. 200-211, 1477-030X (March 2016) Author(s): Sallnow, Libby, Richardson, Heather, Murray, Scott A, Kellehear, Allan Abstract: Communities play an increasingly significant role in their own health and social care, and evidence demonstrates the positive impact of this work on a range of health outcomes. Interest is building regarding the application of the principles of the new public health approach to those facing the end of life and their families and communities. To review the evidence relating to the impact of a new public health approach to end-of-life care, specifically as this applies to efforts to strengthen community action. A systematic review employing narrative synthesis. Both meta-ethnography and the use of descriptive statistics supported analysis. Eight databases (AMED, ASSIA, BiblioMap, CINAHL, Cochrane Reviews, EMBASE, MEDLINE and PsycINFO) were searched from the earliest record to March 2015 using set eligibility criteria. Eight articles were included in the analysis. Three main themes emerged from the meta-ethnography: making a practical difference, individual learning and personal growth and developing community capacity. The quantitative findings mapped to the meta-ethnography and demonstrated that engaging communities can lead to improved outcomes for carers such as decreased fatigue or isolation, increase in size of caring networks and that wider social networks can influence factors such as place of death and involvement of palliative care services. Evidence exists for the impact of community engagement in end-of-life care. Impact assessment should be an integral part of future initiatives and policy makers should recognise that these approaches can influence complex issues such as carer support, community capacity, wellbeing and social isolation. The Author(s) 2015. ________________________________________ Title: Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying. Citation: Sociology of health & illness, Mar 2016, vol. 38, no. 3, p. 479-492, 1467-9566 (March 2016) Author(s): MacArtney, John I, Broom, Alex, Kirby, Emma, Good, Phillip, Wootton, Julia, Adams, Jon Abstract: Home is frequently idealised as the preferred location for end-of-life care, while in-patient hospital care is viewed with suspicion and fear. Yet many people with a terminal illness spend their final days in some form of medicalised institutional setting, such as a specialist palliative care inpatient unit. Drawing on semi-structured interviews with in-patients at a specialist palliative care unit, we focus on their difficulties in finding a better place of care at the end of their life. We found that participants came to conceptualise home though a sense of bodily vulnerabilities and that they frequently understood institutional care to be more about protecting their family from the social, emotional and relational burdens of dying. For a significant number of participants the experience of dying came to be understood through what could be practically accomplished in different locales. The different locales were therefore framed around providing the best care for the patient and their family. 2015 Foundation for the Sociology of Health & Illness.
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Title: Neonatal deaths: prospective exploration of the causes and process of end-of-life decisions. Citation: Archives of disease in childhood. Fetal and neonatal edition, Mar 2016, vol. 101, no. 2, p. F102., 1468-2052 (March 2016) Author(s): Hellmann, Jonathan, Knighton, Robin, Lee, Shoo K, Shah, Prakesh S, Canadian Neonatal Network End of Life Study Group Abstract: To determine the causes and process of death in neonates in Canada. Prospective observational study. Nineteen tertiary level neonatal units in Canada. 942 neonatal deaths (215 fullterm and 727 preterm). Explored the causes and process of death using data on: (1) the rates of withdrawal of life-sustaining treatment (WLST); (2) the reasons for raising the issue of WLST; (3) the extent of consensus with parents; (4) the consensual decision-making process both with parents and the multidisciplinary team; (5) the elements of WLST; and (6) the age at death and time between WLST and actual death. The main reasons for deaths in preterm infants were extreme immaturity, intraventricular haemorrhage and pulmonary causes; in full-term infants asphyxia, chromosomal anomalies and syndromic malformations. In 84% of deaths there was discussion regarding WLST. WLST was agreed to by parents with relative ease in the majority of cases. Physicians mainly offered WLST for the purpose of avoiding pain and suffering in imminent death or survival with a predicted poor quality of life. Consensus with multidisciplinary team members was relatively easily obtained. There was marked variation between centres in offering WLST for severe neurological injury in preterm (10%-86%) and severe hypoxic-ischaemic encephalopathy in full-term infants (5%-100%). In Canada, the majority of physicians offered WLST to avoid pain and suffering or survival with a poor quality of life. Variation between units in offering WLST for similar diagnoses requires further exploration. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rightsand-licensing/ Full Text: Available from Highwire Press in Fetal and Neonatal
Title: Chemotherapy at end-of-life: an integration of oncology and palliative team. Citation: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Mar 2016, vol. 24, no. 3, p. 1421-1427, 1433-7339 (March 2016) Author(s): Chan, Wing-Lok, Lam, Ka-On, Siu, Wai-Kwan, Yuen, Kwok-Keung Abstract: Palliative chemotherapy is increasingly used in cancer patients near end of life. With the development of newer anticancer agents which have less side effects and higher expected efficacy, the decision on palliative chemotherapy in patients near end of life is complex. This article illustrates how oncologist and palliative care physicians can work together effectively. This article also gives an overview about the risks of palliative chemotherapy near end of life, patients' and physicians' perspectives in choosing the aggressive treatment and describes what an oncologist should do when facing this challenging situation.
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________________________________________ Title: Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach. Citation: Palliative medicine, Mar 2016, vol. 30, no. 3, p. 279-295, 1477-030X (March 2016) Author(s): Jones, Louise, Candy, Bridget, Davis, Sarah, Elliott, Margaret, Gola, Anna, Harrington, Jane, Kupeli, Nuriye, Lord, Kathryn, Moore, Kirsten, Scott, Sharon, Vickerstaff, Victoria, Omar, Rumana Z, King, Michael, Leavey, Gerard, Nazareth, Irwin, Sampson, Elizabeth L Abstract: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia. The Author(s) 2015. ________________________________________ Title: Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Citation: Clinical psychology review, Mar 2016, vol. 44, p. 75-93, 1873-7811 (March 2016) Author(s): Nielsen, Mette Kjaergaard, Neergaard, Mette Asbjoern, Jensen, Anders Bonde, Bro, Flemming, Guldin, Mai-Britt Abstract: Caregivers of terminally ill patients may experience anticipatory grief or low levels of preparedness for the patient's impending death. Both concepts are related to a forewarning of the impending loss. Anticipatory grief has been suggested to be grief work before the loss, which would improve bereavement outcome, but recent studies indicate a negative impact. Hence, this review systematically investigates key issues relating to anticipatory grief and preparedness for the death; definitions, measurement tools, and potential effects on caregiver outcome. We used a systematic approach (PRISMA statement). Databases were searched for publications during 1990-2015. Studies on adult caregivers of terminally ill adult patients were included if anticipatory grief or preparedness was assessed by a measurement tool. Anticipatory grief was captured in the definition "pre-loss grief." High levels of grief and low levels of preparedness during caregiving were associated with poor bereavement outcome such as complicated grief. The assumptions that grief work before the loss would alleviate bereavement outcome was not confirmed. Thus, the concept of anticipatory grief is questioned. High preparedness was associated with improved caregiver outcome. Additional support should be given to caregivers with pre-loss grief and low preparedness. Copyright 2016 Elsevier Ltd. All rights reserved. ________________________________________
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Title: Palliative care reimagined: a needed shift. Citation: BMJ supportive & palliative care, Mar 2016, vol. 6, no. 1, p. 21-26, 2045-4368 (March 2016) Author(s): Abel, Julian, Kellehear, Allan Abstract: Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers-an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care. Published by the BMJ Publishing Group Limited. ________________________________________ Title: What are the views of hospital-based generalist palliative care professionals on what facilitates or hinders collaboration with in-patient specialist palliative care teams? A systematically constructed narrative synthesis. Citation: Palliative medicine, Mar 2016, vol. 30, no. 3, p. 240-256, 1477-030X (March 2016) Author(s): Firn, Janice, Preston, Nancy, Walshe, Catherine Abstract: Hospital-based specialist palliative care services are common, yet existing evidence of inpatient generalist providers' perceptions of collaborating with hospital-based specialist palliative care teams has never been systematically assessed. To assess the existing evidence of inpatient generalist palliative care providers' perceptions of what facilitates or hinders collaboration with hospital-based specialist palliative care teams. Narrative literature synthesis with systematically constructed search. PsycINFO, PubMed, Web of Science, Cumulative Index of Nursing and Allied Health Literature and ProQuest Social Services databases were searched up to December 2014. Individual journal, citation and reference searching were also conducted. Papers with the views of generalist inpatient professional caregivers who utilised hospital-based specialist palliative care team services were included in the narrative synthesis. Hawker's criteria were used to assess the quality of the included studies. Studies included (n = 23) represented a variety of inpatient generalist palliative care professionals' experiences of collaborating with specialist palliative care. Effective collaboration is experienced by many generalist professionals. Five themes were identified as improving or decreasing effective collaboration: model of care (integrated vs linear), professional onus, expertise and trust, skill building versus deskilling and specialist palliative care operations. Collaboration is fostered when specialist palliative care teams practice proactive communication, role negotiation and shared problem-solving and recognise generalists' expertise. Fuller integration of specialist palliative care services, timely sharing of information and mutual respect increase generalists' perceptions of effective collaboration. Further research is needed regarding the experiences of non-physician and non-nursing professionals as their views were either not included or not explicitly reported. The Author(s) 2015. ________________________________________ Title: Building a taxonomy of integrated palliative care initiatives: results from a focus group. Citation: BMJ supportive & palliative care, Mar 2016, vol. 6, no. 1, p. 14-20, 2045-4368 (March 2016)
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Author(s): Ewert, Benjamin, Hodiamont, Farina, van Wijngaarden, Jeroen, Payne, Sheila, Groot, Marieke, Hasselaar, Jeroen, Menten, Johann, Radbruch, Lukas Abstract: Empirical evidence suggests that integrated palliative care (IPC) increases the quality of care for palliative patients and supports professional caregivers. Existing IPC initiatives in Europe vary in their design and are hardly comparable. InSuP-C, a European Union research project, aimed to build a taxonomy of IPC initiatives applicable across diseases, healthcare sectors and systems. The taxonomy of IPC initiatives was developed in cooperation with an international and multidisciplinary focus group of 18 experts. Subsequently, a consensus meeting of 10 experts revised a preliminary taxonomy and adopted the final classification system. Consisting of eight categories, with two to four items each, the taxonomy covers the process and structure of IPC initiatives. If two items in at least one category apply to an initiative, a minimum level of integration is assumed to have been reached. Categories range from the type of initiative (items: pathway, model or guideline) to patients' key contact (items: non-pc specialist, pc specialist, general practitioner). Experts recommended the inclusion of two new categories: level of care (items: primary, secondary or tertiary) indicating at which stage palliative care is integrated and primary focus of intervention describing IPC givers' different roles (items: treating function, advising/consulting or training) in the care process. Empirical studies are required to investigate how the taxonomy is used in practice and whether it covers the reality of patients in need of palliative care. The InSuP-C project will test this taxonomy empirically in selected initiatives using IPC. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/productsservices/rights-and-licensing/ ________________________________________ Title: To be involved - A qualitative study of nurses' experiences of caring for dying patients. Citation: Nurse education today, Mar 2016, vol. 38, p. 144-149, 1532-2793 (March 2016) Author(s): Andersson, Erika, Salickiene, Zivile, Rosengren, Kristina Abstract: The aim of this study was to describe nurses' experiences (>two years) of caring for dying patients in surgical wards. Palliative care is included in education for nurses. However, the training content varies, and nurse educators need to be committed to the curriculum regarding end-of-life situations. A lack of preparation among newly graduated nurses regarding dying and death could lead to anxiety, stress and burnout. Therefore, it is important to improve knowledge regarding end-of-life situations. A qualitative descriptive study was carried out in two surgical wards in the southern part of Sweden. The study comprised six interviews with registered nurses and was analysed using manifest qualitative content analysis, a qualitative method that involves an inductive approach, to increase our understanding of nurses' perspectives and thoughts regarding dying patients. The results formed one category (caring-to be involved) and three subcategories (being supportive, being frustrated and being sensitive in the caring processes). Nurses were personally affected and felt unprepared to face dying patients due to a lack of knowledge about the field of palliative care. Their experiences could be described as processes of transition from theory to practice by trial and error. Supervision is a valuable tool for bridging the gap between theory and practice in nursing during the transition from novice to expert. Improved knowledge about palliative care during nursing education and committed nursing leadership at the ward level facilitate preparation for end-of-life situations. Copyright 2015 Elsevier Ltd. All rights reserved.
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BOOKS BACK TO TOP If you are unable to find a book, or require a book that is not on this list, please ask library staff who will be able to locate the book for you using interlibrary loan. Please note that some books detailed below may not be available in your local library and would need to be ordered for you. New books available to borrow. Palliative care nursing at a glance Ingleton et al 2016
Palliative and end of life care in nursing Nicol et al 2014
From the back of the book: Palliative Care Nursing at a Glance is the perfect companion for nursing students, health and social care practitioners, and all those involved in palliative care delivery, both in the clinical and home setting. Written by an expert team of academics, nurses, educators and researchers it provides a concise and easy-to-read overview of all the concepts and clinical decision-making skills necessary for the provision of good-quality palliative and end-of-life care. Divided into six sections, the book includes coverage of all key clinical applications, principles of symptom management, palliative care approaches for a range of conditions and patient groups, exploration of the roles of the multi-professional team, as well as ethical challenges.
From the back of the book: With the number of people requiring palliative and end-of-life care set to increase by 2020, it is the responsibility of every nurse, regardless of specialism, to know how to provide highquality care to this group of people. Yet caring for those nearing the end of life can throw up complex issues, including handling bereavement, cultural and ethical issues, delivering care in a wide variety of settings, symptom management and also ensuring your own emotional resilience. This book is specifically designed to equip nursing students and non-specialists with the essential knowledge in relation to the care and management of people nearing the end of life.
Taunton and SomPar NHS staff - Have you visited the EBL eBook catalogue? Follow the links below and login via OpenAthens to read online books free for 5-10 minutes each day, send requests for eBook loans or purchase suggestions Taunton & Somerset eBook catalogue Somerset Partnership eBook catalogue About OpenAthens 8
COCHRANE SYSTEMATIC REVIEWS BACK TO TOP Reviews from February 2016 Hospital at home: home-based end-of-life care
Protocols from January 2016 Psychosocial interventions for fatigue during cancer treatment with palliative intent
GUIDELINES BACK TO TOP NICE Guidelines NG31- Care of dying adults in the last days of life
UPTODATE BACK TO TOP What’s new from our clinical decision-making tool on the topic of end of life care. UpToDate (Access for Musgrove Park Staff only) Please contact library staff for details on how to access these resources; you will need an Athens password.
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REPORTS, PUBLICATIONS AND RESOURCES BACK TO TOP SCIE (Social Care Institute for Excellence) End of Life Care National Council for Palliative Care
European Association for Palliative Care European Association for Palliative Care th
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14 World Congress of the European Association for Palliative Care- information from the 14 World Congress of the European Association for Palliative Care, held in May 2015 Royal College of Physicians Palliative and end of life care toolkit National Institute for Health Research Themed review- Better Endings: Right care, right place, right time NHS England Transforming end of life care in hospitals: the route to success ‘how to’ guide e-Learning for Healthcare End of life care: e-learning modules to support NICE Guideline NG31 Care of Dying Adults in the Last Days of Life
Faith at end of life: public health approach resource for professionals Public Health England has published Faith at end of life: public health approach resource for professionals. This publication explains the importance of faith at the end of life, for professionals, providers and commissioners working in communities. It provides information to help ensure that commissioning and delivery of services and practice takes account of spiritual needs of the largest 6 faith groups in England and remains appropriate to the community setting in which they work. End of life care: helping people to be cared for and die at home This briefing is for people working in housing, public health, care and support. Recognising a gap in information on this topic, Public Health England commissioned the Housing LIN (Learning and Improvement Network), the leading voice of expert advice and support in the field of housing, care and support services, to produce this briefing.
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A long and winding road: improving communication with patients in the NHS This report warns that poor communication in the NHS has a profound impact on patient care, staff burnout and public funds. It argues that inadequacies in communication are damaging medical care and wasting much-needed NHS resources and estimates that the total cost, in England alone, is likely to be in excess of ÂŁ1 billion a year. It says that better communication between healthcare professionals and patients can save costs, improve health outcomes and enhance the quality of experience of patients and the professionals who support them.
TOPIC ALERTS AND UPDATES BACK TO TOP ABSTRACTS AVAILABLE VIA LINKS BELOW- FOR FULL-TEXT PLEASE ASK LIBRARY STAFF
Patients' and families' perspectives of patient safety at the end of life: a video-reflexive ethnography study Int J Qual Health Care 2016 28: 66-73
NHS Evidence
Hospital at home: home-based end-of-life care Cochrane Database of Systematic Reviews, Published Online: 18 FEB 2016 FREE FULL TEXT
TRIP Database To what degree is palliative care integrated in guidelines and pathways for adult cancer patients in Europe: a systematic literature review. BMC Palliat Care. 2016 Mar 3;15(1):26 FREE FULL TEXT What are the views of hospital-based generalist palliative care professionals on what facilitates or hinders collaboration with in-patient specialist palliative care teams? A systematically constructed narrative synthesis. Palliat Med. 2016 Mar;30(3):240-56. Patient Related Determinants of the Administration of Continuous Palliative Sedation in Hospices and Palliative Care Units: A Prospective, Multicenter, Observational Study. J Pain Symptom Manage. 2016 Feb 24. [Epub ahead of print]
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Building Resilience for Palliative Care Clinicians: An Approach to Burnout Prevention Based on Individual Skills and Workplace Factors. J Pain Symptom Manage. 2016 Feb 24 [Epub ahead of print]
TWITTER BACK TO TOP The latest from popular Twitter pages dedicated to end of life care: End of Life Studies @EndofLifeStudy Public Health Palliative Care @PHPalCare European Association for Palliative Care @EAPCOnlus Cicely Saunders Institute @CSI_KCL Palliative Medicine Journal @PalliativeMedJ
TRAINING & NETWORKING OPPORTUNITIES, CONFERENCES, EVENTS BACK TO TOP
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Effective Non-Medical Prescribing in End of Life Care- 15 April 2016, Hallam Conference Centre, London th
Effective Nurse Prescribing in End of Life Care- 15 April 2016, Hallam Conference Centre, London Westminster Health Forum- Priorities for palliative and end of life care policy: choice, quality th and integration- 19 April 2016, London th
Implementing the NICE Clinical Guideline on Care of the Dying Adult- 19 May 2016, Hallam Conference Centre, London th
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9 World Research Congress of the European Association for Palliative Care- 9 -11 June 2016, Dublin th
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15 World Congress of the European Association for Palliative Care- 11 -13 May 2017, Madrid th
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5 International Public Health and Palliative Care Conference- 18 - 20 September 2017, Ottawa, Ontario, Canada- Includes links to past conferences and presentations
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LITERATURE SEARCH SERVICE BACK TO TOP Looking for the latest evidence-based research but haven’t got time to trawl the databases? Do you need a literature search carried out? Do you need to find evidence to support an improvement? Do you want to know how something has been done elsewhere and whether it worked?
Library staff provide a literature search service for busy clinicians who are pressed for time.
To request a search please complete and return the appropriate form, providing as much information as possible. Alternatively if you would like an assisted search training session, where we will sit down with you and go through the steps of a literature search, then please contact the library. Musgrove staff click here to access literature search form Somerset Partnership staff click here to access literature search form
TRAINING AND ATHENS BACK TO TOP Most electronic resources are available via an Athens password. You can register for this via the Library intranet page, or from home at www.swice.nhs.uk and following the link for Athens selfregistration. Please note that registering from home will take longer as it will need to be verified that you are NHS staff/student on placement. The library offers training on how to access and use Athens resources, as well as an introductory course on critical appraisal. You can book a course through the Learning and Development intranet page, or by contacting the library directly.
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