June end of life current awareness by Musgrove Park Hospital Library

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 5 June 2016

Contents Click on a section title to navigate contents Page Results of Library Current Awareness Survey

Colleague App

Recent journal articles

Books

Guidelines

UpToDate

Reports, publications and resources

Topic Alerts and Updates

Twitter

Training & Networking Opportunities, Conferences, Events

Literature search service

Training and Athens

Library contact details: Library Musgrove Park Academy Musgrove Park Hospital Taunton Somerset TA1 5DA Tel: 01823 34 (2433)

Email: library@tst.nhs.uk Blog: http://librarymph.wordpress.com @musgrovesompar

RESULTS OF LIBRARY CURRENT AWARENESS SURVEY BACK TO TOP

During 2015-6 the library team introduced a number of new current awareness bulletins as a result of feedback from staff. Along with the fortnightly Library Alert monthly updates were produced for: Dementia Stroke End of life Sign up to safety

Mentorship Cancer ITU

While we had some feedback that these bulletins were useful, we felt due to the cost in library staff time, it would be better to have more detailed evidence. We circulated the survey via email to the various email lists, added a link on the Library webpage and also put reminders in the Library Alert and Staff Bulletin. During the month when we received 211 replies on all bulletins covering both Taunton and Somerset and Somerset Partnership staff. The final report can be found here

COLLEAGUE APP BACK TO TOP The MPH Staff App has specifically been produced and designed to offer both current and future employees relevant information related to their work. Whether seeking information about policies and procedures, following us on Twitter or even taking advantage of special offers, all can be found here.

Library monthly current awareness bulletins are also available. To download, please follow this link Please note- The app has not been created by the library. If you have any problems downloading or accessing the app then you will need to contact the IT department.

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: We have to talk: results of an interprofessional clinical simulation for delivering bad health news in palliative care Citation: Clinical Simulation in Nursing, Aug 2016, vol. 12, no. 8, p. 320-327, 1876-1399 (August 2016) Author(s): Pastor, Diane K., Cunningham, Robin P., White, Patricia H., Kolomer, Stacey Abstract: Background: Primary care providers, including nurse practitioners and social workers, are often the first point of contact in communicating difficult health news to their clients. Method: This article reports an innovative interprofessional simulation created by faculty to pair graduate nurse practitioner and social work students to deliver bad health news in a simulated primary care setting. Results: Students improved in their readiness to work together in delivering bad news and reported that they gained proficiency in completing this task. Conclusions: This project promoted improved communication and interprofessional practice skills in graduate nursing and social work students.

Title: Perceptions of Palliative Care in the NICU Citation: Advances in Neonatal Care, Jun 2016, vol. 16, no. 3, p. 191-200, 1536-0903 (June 2016) Author(s): Falck, Alison J., Moorthy, Sheela, Hussey-Gardner, Brenda Abstract: Background and Purpose: The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was to examine provision of PC as experienced by mothers and healthcare providers (HCPs) of NICU patients with life-threatening illnesses. Palliative care components explored included communication, choices, comfort, psychosocial and spiritual needs, and coordination of care. Methods: In this qualitative, descriptive study, we conducted semistructured interviews with mothers of infants with life-threatening illnesses and NICU HCPs who cared for these infants. Mothers selected HCPs who were key figures during their infant's NICU stay to participate. Interviews were transcribed and manually coded until themes emerged and theoretical saturation was achieved. Researchers reviewed charts for demographics and notes pertaining to PC. Triangulation of maternal interviews, HCP interviews, and chart notes was performed. Results: Theoretical saturation was achieved after 12 interviews. Mothers identified 5 nurses and 1 physician to be interviewed. Five themes were identified following data analysis and triangulation: (1) communication, (2) privacy, (3) continuity of care and relationship building, (4) maternal knowledge seeking, and (5) emotional turmoil. Implications for Practice and Research: Of domains of pediatric PC explored, participants emphasized transparent communication, family meetings as a venue for collaboration and shared decision making, the significance of psychosocial support for maternal emotional distress, and the importance of continuity of care across an often long

and stressful hospitalization. Although mothers desired privacy, participants valued the security of the open-room NICU design. Future research should address components of PC that predominate in this specialized population.

Title: Anticipatory Grief: A Mere Concept? Citation: American Journal of Hospice and Palliative Medicine, Jun 2016, vol. 33, no. 5, p. 417-420, 1049-9091 (June 2016) Author(s): Moon, Paul J. Abstract: Anticipatory grief (AG) has been studied, debated, and written about for several decades. This type of grief is also recognized in hospice and palliative care (HPC). The question, however, is whether the reality of AG is sufficiently upheld by professionals at the point of concrete service delivery. In other words, is AG a mere concept or is everyday practice of HPC duly informed of AG as evidenced by the resulting care delivery?

Title: Is There a Need for Early Palliative Care in Patients With Life-Limiting Illnesses? Interview Study With Patients About Experienced Care Needs From Diagnosis Onward Citation: American Journal of Hospice and Palliative Medicine, Jun 2016, vol. 33, no. 5, p. 489-497, 1049-9091 (June 2016) Author(s): Beernaert, Kim, Deliens, Luc, De Vleminck, Aline, Devroey, Dirk, Pardon, Koen, Van den Block, Lieve, Cohen, Joachim Abstract: The early integration of specialist palliative care has been shown to benefit the quality of life of patients with advanced cancer. In order to explore whether other seriously ill people and people at even earlier phases would also benefit from early palliative care, we conducted 18 qualitative interviews with people having cancer, chronic obstructive lung disease, heart failure, or dementia at different phases of the illness trajectory about how they experienced care needs related to their disease from diagnosis onward. Respondents experienced needs within the different domains of palliative care at different stages of the illness and different illness types or duration of the illness. This study contributes to the understanding of primary care needs of patients for whom palliative care (not necessarily specialized palliative care) could be beneficial.

Title: Palliative care case conferences in long-term care: views of family members Citation: International Journal of Older People Nursing, Jun 2016, vol. 11, no. 2, p. 140-148, 17483735 (June 2016) Author(s): Parker, Deborah, Clifton, Karen, Tuckett, Anthony, Walker, Helen, Reymond, Elizabeth, Prior, Teresa, McAnelly, Kristien, Jenkin, Peter, Israel, Fiona, Greeve, Kim, Glaetzer, Karen Abstract: Aims and objectives: This paper examines the use of structured Palliative Care Case Conferences in long-term care. The issues families bring to the Palliative Care Case Conference, their level of distress prior to the conference, the extent to which these issues are addressed by staff and family satisfaction with this process are described. Background: In most developed countries, up to 30% of older people die in long-term care. A palliative approach generally refers to the resident and family as the 'unit of care'. Interventions, which include family in palliative care, are required in this

setting. Design: Descriptive and thematic results from the intervention arm of a pre-post, sequential mixed method study. Methods: Examination of documents of 32 resident/family dyads participating in a Palliative Care Case Conference, and interviews with the residents' family postintervention. Results: Main concerns raised by family members prior to a Palliative Care Case Conference were physical and medical needs, pain, end-of-life care planning and nutrition and hydration. Families rated a high level of concern, 7.5 on a 10-point rating scale, prior to the Palliative Care Case Conference. A formalised Palliative Care Case Conference process ensured issues relating to end-of-life care planning, pastoral care, pain and comfort and physical and medical needs were well documented by staff. Issues relating to care processes and the family role in care were less well documented. All families, interviewed postintervention, recommended Palliative Care Case Conferences; and over 90% of families felt their issues were addressed to their satisfaction. Families also reported an increased understanding of the resident's current and future care. Conclusions: The Palliative Care Case Conference in long-term care provides an important platform for family to voice concerns. Palliative Care Case Conference documentation indicates that staff are attending to these issues, although more reference to concerns relating to care processes and the family role could be made. Implications for practice: Increased communication between staff and family, in the form of a Palliative Care Case Conference, may reduce stress, anxiety and unwanted hospitalisations during the palliative phase.

Title: When a Patient Discusses Assisted Dying: Nursing Practice Implications Citation: Journal of Hospice and Palliative Nursing, Jun 2016, vol. 18, no. 3, p. 184-191, 1522-2179 (June 1, 2016) Author(s): Lehto, Rebecca H., Olsen, Douglas P., Chan, Roxanne Raffin Abstract: Patients with terminal illness in their final stages of life may contemplate their options for death and dying. There has been growing public interest and media attention regarding patient decision making and autonomy at the end of life. The article provides updated legal and ethical discussion about issues and trends associated with the assisted dying debate. A case study of a patient who was considering assisted dying via moving to the state of Oregon is presented. Practical strategies and resources for palliative care and hospice nurses who may have dialogue with patients relative to end-of-life concerns are described.

Title: Palliative Care and Intensive Care Units: A Systematic Review Citation: Journal of Hospice and Palliative Nursing, Jun 2016, vol. 18, no. 3, p. 201-211, 1522-2179 (June 1, 2016) Author(s): Roczen, Marisa L., PhD, Kenneth R. White, Epstein, Elizabeth G. Abstract: Palliative care has become a crucial component of providing high-quality care to critically ill patients in the early 21st century. While efforts to assess the delivery of palliative care in critical-care settings have been made, few syntheses of published evaluation studies focusing on a wide-ranging selection of clinical and nonclinical outcomes exist. We thus systematically reviewed the evidence for effects of palliative care programs. Original research studies were selected, which evaluated the effect of palliative care interventions in medical, surgical, and combined intensive care units (ICUs) on selected clinical and nonclinical outcomes in ICUs. Search of MEDLINE/PubMed, CINAHL, and Web of Science from 2000 through 2013 was performed. The inclusion criteria included ICUs (surgical,

medical, or combined) or ICU patients as the level of analysis and outcome evaluation of palliative care practices delivered in an ICU setting. The literature search revealed 1577 citations. Reviews of titles, abstracts, and articles resulted in 12 studies for inclusion. While quantitative evidence for the effects of palliative care interventions on patient and organizational outcomes was mixed, several consistent significant findings could be identified.

Title: Opportunities to maximize value with integrated palliative care Citation: Journal of Multidisciplinary Healthcare, May 2016, vol./is. 9/(219-226), 1178-2390 (05 May 2016) Author(s): Bergman J., Laviana A.A. Abstract: Palliative care involves aggressively addressing and treating psychosocial, spiritual, religious, and family concerns, as well as considering the overall psychosocial structures supporting a patient. The concept of integrated palliative care removes the either/or decision a patient needs to make: they need not decide if they want either aggressive chemotherapy from their oncologist or symptom-guided palliative care but rather they can be comanaged by several clinicians, including a palliative care clinician, to maximize the benefit to them. One common misconception about palliative care, and supportive care in general, is that it amounts to "doing nothing" or "giving up" on aggressive treatments for patients. Rather, palliative care involves very aggressive care, targeted at patient symptoms, quality-of-life, psychosocial needs, family needs, and others. Integrating palliative care into the care plan for individuals with advanced diseases does not necessarily imply that a patient must forego other treatment options, including those aimed at a cure, prolonging of life, or palliation. Implementing interventions to understand patient preferences and to ensure those preferences are addressed, including preferences related to palliative and supportive care, is vital in improving the patient-centeredness and value of surgical care. Given our aging population and the disproportionate cost of end-of-life care, this holds great hope in bending the cost curve of health care spending, ensuring patient-centeredness, and improving quality and value of care. Level 1 evidence supports this model, and it has been achieved in several settings; the next necessary step is to disseminate such models more broadly. Full Text: Available from National Library of Medicine in Journal of Multidisciplinary Healthcare Available from National Library of Medicine in Journal of Multidisciplinary Healthcare

Title: End-of-life Care Planning and Fragility Fractures of the Hip: Are We Missing a Valuable Opportunity? Citation: Clinical Orthopaedics & Related Research, 2016, vol./is. 474/7(1736-1739), 0009921X Author(s): Dunn, Robin, Ahn, Jaimo, Bernstein, Joseph, Dunn, Robin H Abstract: Background: Approximately 20% of all geriatric patients who sustain low-energy hip fractures will die within 1 year of the injury, and approximately 3% will die during the initial inpatient hospital stay. Accordingly, the event of a geriatric hip fracture might be an apt prompt for discussing end-of-life care: in light of the risk of death after this injury, the topic of mortality certainly is germane. However, it is not clear to what degree physicians and patients engage in end-of-life planning even when faced with a hospital admission for this potentially life-threatening

condition.Questions/purposes: We assessed the frequency with which end-of-life care discussions were documented among a sample of geriatric patients admitted for hip fracture surgery.Methods: We studied 150 adult patients, 70 years and older, admitted between September 2008 and July 2012 for the care of an isolated low-energy hip fracture, who did not have documented evidence of end-of-life care planning before the time of admission. For each patient, the medical record was scrutinized to identify documentation of end-of-life care discussions, an order changing "code status," or a progress note memorializing a conversation related to the topic of end-of-life care planning.Results: Of the 150 subjects who had no documented evidence of end-of-life care planning at the time of admission, 17 (11%) had their code status changed during the initial hospitalization for hip fracture, and an additional four patients (3%) had a documented conversation regarding end-of-life care planning without a subsequent change in code status. Accordingly, there were 129 (86%) patients who had no record of any attention to end-of-life care planning during the hospital stay for hip fracture surgery.Conclusions: Our findings suggest that physicians may be missing a valuable opportunity to help patients and their families be better prepared for potential future health issues. End-of-life care planning respects patient autonomy and enhances the quality of care. Accordingly, we recommend that discussion of goals, expectations, and preferences should be initiated routinely when patients present with a fragility fracture of the hip.Level Of Evidence: Level IV, therapeutic study.

Title: Education in End-of-Life Care: What Do Experienced Professionals Find Important? Citation: Journal of Cancer Education, 2016, vol./is. 31/2(272-278), 08858195 Author(s): Jors, Karin, Seibel, Katharina, Bardenheuer, Hubert, Buchheidt, Dieter, Mayer-Steinacker, Regine, Viehrig, MarĂŠn, Xander, Carola, Becker, Gerhild, Viehrig, MarĂŠn Abstract: End-of-life care is an essential element of quality cancer care. Nevertheless, a majority of physicians and nurses working at cancer centers feel unprepared for this task. As part of a larger survey study, we investigated what suggestions experienced physicians and nurses have to improve education/training on end-of-life care. In an open question, participants were requested to suggest changes to the end-of-life curriculum for physicians and nurses. Answers to this question were content analyzed using the qualitative data analysis software MAXQDA. Physicians and nurses at 10 cancer centers throughout Baden-Wuerttemberg were surveyed. From the total 1131 survey participants, 675 (483 nurses, 167 physicians, 25 unknown) responded to the open question regarding suggestions for education/training in end-of-life care. Two main categories were inductively developed: (1) format (i.e., structure and method of teaching) and (2) content (i.e., knowledge and know-how required for care of the dying). Regarding format, both professional groups most often wished for more practical experiences with dying patients (e.g., internships at hospices). Regarding content, physicians and nurses most frequently requested (1) more basic information on palliative care, (2) increased skills training in communication, and (3) knowledge of how to appropriately care for patients' caregivers. The results of our analysis reflect already trained physicians' and nurses' interest in furthering their knowledge and skills to care for dying patients. The suggestions of experienced physicians and nurses should be integrated into the further development of palliative care curricula.

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. Some books from our electronic book collection- click on book cover and log in with your OpenAthens password to browse free online or to request access.

Spirituality and coping with loss: end of life healthcare practice Greenstreet, W 2016

Textbook of palliative care communication Wittenberg, E 2016

From the back of the book: Spirituality and Coping with Loss: End of Life Healthcare Practicedescribes a research study that reflects nurses' experience of the nature of loss encountered in end of life care settings as well as the ways in which spirituality is a resource in coping in these situations. Key findings indicate how nurses' spiritual development impacts their proficiency in spiritual care. These findings will be of interest to nurses and nurse educators as well as other healthcare professionals.

From the back of the book: This resource was uniquely developed by an interdisciplinary editorial team to address an array of providers including physicians, nurses, social workers, and chaplains, and it unites clinicians with academic researchers interested in the study of communication. By featuring practical conversation and curriculum tools stemming from research, this text integrates scholarship and inquiry into translatable content that others can use to improve their practice, teach skills to others, and engage in patient-centered communication. The volume begins by defining communication, explicating debatable issues in research, and highlighting specific approaches to studying communication in a palliative care context. Chapters focus on health literacy and cultural communication, patient and family communication, barriers and approaches to discussing palliative care with specific patient populations, pain, life support, advance care planning, and quality of life topics such as sexuality, spirituality, hope, and grief. Team communication in various care settings is outlined, and current research and education for healthcare professionals are summarized. Unique to this volume are chapters on conducting communication research, both qualitatively and quantitatively, to promote further research in palliative care.

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 eBook catalogue About OpenAthens 9

GUIDELINES

UPTODATE BACK TO TOP Whatâ&#x20AC;&#x2122;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.

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

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

NEW National Council for Palliative Care report The National Council for Palliative Care (NCPC) have published a new report Staff prepared to care? Capacity and competence in the end of life care workforce. CQC Review A different ending: End of life care review This review of end of life care found that people from certain groups in society sometimes experience poorer quality care because providers do not always understand or fully consider their needs. In light of this, the report argues that some commissioners and providers might not be fulfilling their duties under the Equality Act 2010 as all public bodies have a legal duty to consider the needs of a range of equality groups when carrying out their day-to-day work. The review identified examples of good practice, but found that action is needed to make sure everyone has the same access to high quality, personalised care at the end of their lives, regardless of their diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances. NHS Employers End-of-life care information and training End-of-life care is an important subject. It gives more choice to patients on how and where they die, and ensures that they receive high quality care as they approach the end of their lives. We are working with Health Education England on a new programme of work which aims to support and encourage NHS organisations to invest in the education and training of staff to deliver high quality, end-of-life care. A low priority? How local health and care plans overlook the needs of dying people LINK OPENS BEST IN CHROME BROWSER Hospice UK’s report on the priority of palliative and end of life care in local health and care needs assessments and strategies.

“Hiding who I am”- The reality of end of life care for LGBT people Everyone should have the right to high-quality palliative care when they have a terminal illness, regardless of their condition, where they live, or their personal circumstances. The UK has been ranked as the best country in the world for the quality of palliative care on offer here. However, access to this care is patchy. One in four people who need palliative care miss out each year. LGBT people experience significant barriers to getting palliative care when they need it. This report explores why.

TOPIC ALERTS AND UPDATES BACK TO TOP ABSTRACTS AVAILABLE VIA LINKS BELOW- FOR FULL-TEXT PLEASE ASK LIBRARY STAFF

NHS Evidence Delirium and agitation at the end of life BMJ 2016; 353 (Published 09 June 2016) Advance care planning, palliative care, and end-of-life care interventions for homeless people: A systematic review Palliat Med. 2016 Jun 3. [Epub ahead of print]

Medline Plus Prevalence of and Factors Related to Discordance About Prognosis Between Physicians and Surrogate Decision Makers of Critically Ill Patients JAMA. 2016; 315(19):2086-2094

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

15 World Congress of the European Association for Palliative Care- 11 -13 May 2017, Madrid th

5 International Public Health and Palliative Care Conference- 18 - 20 September 2017, Ottawa, Ontario, Canada- Includes links to past conferences and presentations

LITERATURE SEARCH SERVICE BACK TO TOP Looking for the latest evidence-based research but havenâ&#x20AC;&#x2122;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.