New publication builds on ethical framework for end-of-life care

A new book due to be launched by Cork University Press on November 16th develops and expands on the Ethical framework on end-of-life care produced by the Hospice Friendly Hospitals programme last year (more details HERE)

End-of-life Care ethics and lawwritten by Joan McCarthy, Mary Donnelly, Dolores Dooley, David Smith & Louise Campbell takes the eight modules of the ethical framework as its foundation.

The book draws on the body of research on the ethical issues in caring for patients at the end-of-life. It pulls together guidelines, codes of conduct, legal positions and bioethical perspectives to act as a multidisciplinary reference source for healthcare and legal professionals seeking clarification on these complex issues. Further details and context on the publication are available HERE.

Therese Brady Library Summer Newsletter now available

The Summer issue of the Therese Brady Library Newsletter is now available.

This issue features; updates on library developments, upcoming conference dates, resource update on using the new iphone/ipod touch app for EBSCO databases, article overviews and a review of ‘The Spirit Level

You can read the digital edition of the newsletter HERE

 

 

 

Europe-wide survey reveals priorities for end-of-life care

Europe-wide survey reveals priorities for end-of-life care.

A new study of end-of-life care preferences in the UK, the Netherlands, Belguim, Portugal, Spain and Italy conducted by Kings College London has revealed that for many the quality of their remaining time outweighs quantity of remaining years.

The study, conducted by EU funded PRISMA consortium (based in KCL) addressed peoples attitudes to issues around end-of-life care like dealing with pain, the buden of being cared for by a loved one and the value of extending life in cases of serious illness.

71% of the 9339 people surveyed indicated they would rather improve the quality of the life they had left with only 4% of respondents stating they would wish to extend life.  Professor Irene Higginson, head of PRISMA sees the findings as an indication that more emphasis needs to be placed on patients priorities for care at end-of-life.

 

Smart research – Smart phone apps in palliative care & bereavement

Continuing the theme of smart libraries and smart research tools here are just a few smart phone apps to make keeping up to date with new research in palliative care and bereavement even easier.

PubMed Apps – If you regularly conduct searches for medical literature online you are likely to be familiar with PubMed the National Library of Medicines Medline citation database. PubMed has several smart phone apps both free and fee based.

PubMed on Tap – This app has both a free and a paid version. Pubmed on Tap is the paid version and costs €2.39 while on tap lite is the free version. Both allow for PubMed searching and include reference storage, PDF retrieval from the web, links to full text articles will open in your phone’s browser and both apps integrate the advanced search features of the PubMed database. Of the free PubMed apps  PubMed lite is probably the best though search results are limited to ten items so if you plan on making extensive use of PubMed on your phone it may be worth opting for the full version of PubMed on Tap.

British Medical Journal Logo Like PubMed, The British Medical Journal (BMJ) has a number of apps catering to different specialities from disease specific apps (diabetes, depression) to apps for medical students and a doctors toolkit. Of the BMJ apps, the Best Practice Decision support app is relevant to all allied health professionals. It provides a searchable database of guidelines, evidence and symptom details and facilitates quick access to expert opinion and best practice guides across medical disciplines.

Journal RSS – This is a really useful free app which enables RSS feeds from selected journal publications direct to your phone. You can select journal titles from a range of publishers like Elsevier, Oxford and Nature and  receive RSS updates and table of content alerts.

PalliMed Blog app

PalliMed is a blog dedicated to providing information, research reviews and commentary on Palliative, End-of-Life and hospice care. Its contributors are palliative care physicians and the blog is a valuable resource for new publications and insight on end-of-life issues. The Pallimed app is free  and is available for both iphone and andriod.

Similarly the GeriPal blog aims to provide up to date insight and research reviews on palliative care and geriatrics. The Geripal app is free and provides mobile access to the blog. This is a particularly useful app for anyone with a particular interest in eldercare.

Irish views on death & dying

New research published in the current volume of the Journal of Medical Ethics (Vol 36) presents the findings of a survey aimed at examining the Irish public’s understanding of death and dying.

The national survey, funded by the Irish Hospice Foundation asked respondents to comment on a range of ethical issues in relation to death and dying including questions about their familiarity with terms like advance care directive, palliative sedation or artificial hydration as well as questions about their attitudes to death and dying, their preferences for treatment and decision making in event of terminal illness.

Responses indicate that there is a general lack of awareness of the terminology of end-of-life care, that most respondents expect honest communication in relation to terminal diagnoses and that a large degree of trust still exists in physicians ability to make the right end-of-life care decisions. Consistent with patient and family responses in the National audit of end-of-life care, the research indicates that for most people the quality of death is important.

Article abstract is available HERE and access to a full text copy is available via the Therese Brady Library

Illness, crisis & loss – now available through the Therese Brady Library

The Therese Brady Library now subscribes to the journal Illness, crisis & loss in electronic format. Coverage ranges    back to Volume 7  Number 9, 1999 .

Illness, crisis & loss is published by Baywood, the publishers of Omega; the journal of death and dying and the title is a  resource for exploration of the psychosocial and ethical issues related to terminal and life limiting illness, human crises and trauma as well as bereavement, loss and palliative care. The scope of topic coverage makes it a useful source for  professionals and researchers in the areas of bereavement, counselling, therapy, social work, medical care or support services for those in crisis.

Username and passwords for access are available from the library for Irish Hospice Foundation staff and students.

Nursing Times article examines delayed hospital discharge for patients with palliative needs

The current issue of Nursing Times features the findings of a (UK) audit of patients with palliative care needs. The findings point to poor communication,  equipment shortages, difficulties transferring patients to care pathways and lack of cooperation between hospitals and social care networks as causing delayed discharge for palliative patients.

View the full article here; Why do patients with complex palliative needs experience delayed hospital discharge? | Practice | Nursing Times.

Also in the current issue, Clare Lomas examines why nurses should adopt a systematic approach in facilitating patients end-of-life preferences in her article ‘Hospital nurses should be ‘systematic’about end-of-life care’

Research in End-of-life & Palliative care – 2 new articles

Two recent articles spotlight some of the issues arising for palliative and end-of-life care researchers both in conducting searches for literature and conference abstracts and also in delivering their own research output.

In ‘Not published, not indexed: issues in generating and finding hospice and palliative care literature‘  published in the current Journal of Palliative Medicine Tieman, Abernethy and Currow address the challenges in conducting definitive searches for palliative care literature and conference abstracts. Their findings indicated a conversion rate of conference abstracts to journal publications of just 15.9%

Anyone reading Tieman et al’s article should note their reference to the Australian site Care Search – a resource well worth keeping an eye on as it provides updates on new publications and research in palliative care and bereavement.

In ‘Delivering research in end-of-life care;  problems, pitfalls and future priorities’ in the current issue of Palliative Medicine, Bennett, Davies & Higginson review challenges to presenting end-of-life care literature in light of shifting health care policy and priorities.  Members of the Therese Brady library can obtain full text copies of this article by contacting the library.

Resource spotlight – End-of-life care intelligence network

The National End-of -Life Care Intelligence Network (NEoLCIN) was established as part of the UK End-of-Life care strategy to collate research and information on palliative and end-of-life care.

The NEoLCIN website brings together research, data sources, resources and even case study profiles to create a repository of information to assist practitioners, researchers, social and health care workers and those researching end-of-life care quality.

The  resources section features links to relevant journals and publications and the data sources page lists reliable sources for the assessment of end-of-life care subdivided into categories such as dementia, hospice care, mortality, place of death or sudden death.

This is a very comprehensive portal site for anyone looking for reliable end-of-life care research and assessment material so well worth bookmarking or signing up for their email content alerts.

‘Spirit in a place of strangers’ – Seminar – NUIM Centre for transformative narrative inquiry

 NUI Maynooth’s Centre for Transformative narrative inquiry presents an evening seminar on Wednesday 9th June 7.30 – 9.30 p.m. and a class on Thursday 10th June from 9.30 a.m – 3.30 p.m entitled ‘Spirit in a place of strangers’. 

The seminar will be presented by Professor Arthur  W. Frank  of University of Calgary. Professor Frank, a medical sociologist has published extensively on the subject of illness and its impact on the individual, drawing at times on personal experience, in publications such as ‘At the will of the body’. The seminar will examine narrative techniques for the exploration of the illness experience and as such would be of interest to palliative and social care workers, pastoral care workers, hospice and bereavement professionals as well as those interested in medical sociology or narrative technique.

Further details and booking information can be obtained by contacting Mary Corbally at the Department of Adult and Community Education NUI Maynooth Phone (01) 708 3784.  Email: mary.corbally@nuim.ie