Lancaster University is to share in a £4 million European research project, the first of its kind in end of life care planning, which will inform Government and European policy.
The Action Project is an EU funded investigation which, ultimately, seeks to improve the quality of life for people with advanced lung and colo-rectal cancers.
Lancaster will work with organisations in the Netherlands, Belgium, Italy, Slovenia and Denmark to collect data from patients, their families and health care professionals.
The four-year study, which began this week, will ‘test drive’ the effectiveness of a new structured conversation model, developed and now being used in the US, where people are invited to assess their options and express preferences for end of life care.
More information about this project can be found at the following page:
A complete hospice culture change to ‘truly include’ family carers has been recommended by Lancaster University researchers looking at the future of hospice care over the next decade.
Professor Sheila Payne, the Director of the International Observatory on End of Life Care at Lancaster University and President of the European Association for Palliative Care, working with Research Associate Dr Hazel Morbey were engaged by the Commission for the Future of Hospice Care.
“There has been a history of policy changes designed to benefit carers but, sadly, the experiences of family carers of those approaching the end of life appears to be largely unchanged and continues to be unnecessarily challenging,” said Professor Payne.
“The question is why? In our view, the culture of hospice care needs to truly include family carers as central in their relationship with patients and as worthy beneficiaries of support both during and after the death of the patient.”
Professor Payne presented her findings and recommendations at the Help the Hospices Conference in Bournemouth on 23rd October 2013.
The aims of the study were to draw together existing knowledge about hospice care relating to family carers of those facing the end of life and to provide recommendations to address gaps in service for them.
The report draws on published and grey literature and evidence from empirical research predominantly from studies of support services in the UK, Australia and Canada.
The report flagged up:
The study shows carers often experience considerable physical, psychological, social and financial challenges for which they are largely unprepared. They also perceive they have little choice in decision-making about their role and the nature of care provision. And little is known about the full economic cost for individuals in providing end of life care.
Changes to employment patterns with more female workers, delayed pension entitlement and more part-time working are likely to mean people will have to combine paid employment with care provision.
And the diversity of family ‘constellations’ now require complex care arrangements, especially for divorced, step and single carers. Multi-generational caring roles are becoming more commonplace with a ‘sandwich’ generation in middle age providing care to those older and younger than themselves.
The study flagged up evidence that many health care professionals often feel unprepared for supporting and understanding carers’ experiences. Many hospice staff are intrinsically motivated to help family carers but systems and work patterns consistently place barriers in how carers are recognised and supported.
The report recommends:
“The culture of hospice care needs to truly include family carers as central in their relationship with patients and as worthy beneficiaries of support both during and after the death of the patient”
Professor Sheila Payne
Director, International Observatory on End of Life Care
“This is a timely reminder of the huge contribution that family carers make to people who have a life-limiting condition and how they need to be better recognised and supported by hospices. While hospice staff have a genuine desire to work well with family carers, there are still barriers that prevent them from doing so and their needs are often overlooked as a consequence.
“This report will act as a catalyst for hospices, and the organisations which support them, to help increase overall awareness of carers’ needs and develop new ways of working to help support them better.”
National Clinical Lead at Help the Hospices
Umbrella organisation Help The Hospices, which supports independent and voluntary hospices - about 80% of UK hospices, set up the Commission, chaired by Dame Claire Tickle, a year ago to examine the future of hospice care. All Lancaster University’s research recommendations have been included in the Commission document.
Follow the Twitter discussion, (#HospiceConf).
A greater openness to research in hospices, achieved through a range of initiatives including a new research-orientated framework and partnerships, has been recommended by Lancaster University academics examining the future of hospice care in the UK.
The hard-hitting study, which identified 20 barriers to research associated with hospice care, said the hospice environment was not always conducive to research. Apathy and, in some cases, 'overt hostility' towards research created barriers for starting new projects at some UK hospices.
Led by Professor Sheila Payne, the Director of the International Observatory on End of Life Care at Lancaster University and President of the European Association for Palliative Care, the team were engaged by the Commission for the Future of Hospice Care to look in detail at Research in Hospice Care.
Professor Payne presented findings and recommendations at the Help the Hospices Conference in Bournemouth on 22nd October 2013.
The report also highlighted that the majority of hospice organisations in the UK tended to work in isolation on specific initiatives rather than combining as a 'community of effort' and benefiting from research partnerships with the NHS or University sectors.
The study found that some hospice trustees and senior managers knew very little about research or understood the implications of research or the need for research.
And a lack of research leadership and mentorship within the hospice sector, together with a lack of infrastructure, clarity, understanding, resources, funding, capacity, time, skills and expertise were also singled out as barriers.
The study found there was little engagement with service user involvement in research and the nature of undertaking research with patients with advanced conditions and their families was 'challenging'.
Click this link to download the report in full.
View Sheila Payne's blog about this study.
Follow the Twitter discussion, (#HospiceConf).
Professor Sheila Payne was invited to present a key note talk at the 3rd Symposium in palliative care at Barretos, Brazil on 3-5th October 2013. She highlighted the challenges that remain in undertaking research in palliative care as well as the progress that has been made. The thee day Symposium attracted a large multi-disciplinary audience from southern Brazil. She also met with clinicians and funders at the Barretos Cancer Hospital and the newly built Children's Cancer Hospital which offers services to a huge population in southern, central and eastern Brazil. She combined her trip with presenting the EAPC revised Atlas of Palliative Care in Europe at the Opening Plenary session of the Brazilian National and Portuguese speaking International Congress held in Porto de Galinhas from 10-12th October.
An e-newsletter has been developed as a resource for communities intending to undertake community engagement around public awareness and end of life issues (practitioners, strategic end of life leads and commissioners). Drawing upon a range of projects being undertaken in the north west of England this resource presents an overview including filmed video clips, PDF reports and resources of different projects, identifies the catalysts, what is working, challenges, lessons learned and suggests future steps. This resource has been funded by a Lancaster University, Faculty of Health and Medicine Knowledge exchange grant as a partnership between the International Observatory on End of Life Care and Stories to Change CIC.
Visit the site by clicking here.
The fourth Summer Academy for the Doctorate in Palliative Care took place between the 24th and 28th June, this year. With students spanning a wide range of disciplines and from many countries, the Academy, as in previous years, was a great success.
One of our new students, Janette Fish, was able to attend the Academy with the help of bursary funding from Alison Walters, who has graciously supported several Observatory-led activities in memory of her husband Richard Walters.
Janette is a bereavement counsellor at St Christopher's Hospice, London.
Updated: 28 June 2013
Dr Anne Grinyer has won an award for one of the most valuable texts of 2012, as chosen by the American Journal of Nursing's panel of judges.
The review had this to say of Anne's publication "Palliative and End of Life Care for Children and Young People: Home, Hospice and Hospital":
Children who have life-limiting conditions that will end in death upset the normal order of life. This is a highly emotional and difficult topic, even for health care professionals. This well-written book incorporates references and case studies to illustrate the point.
The book documents many of the problems in the current system of palliative care for children and young adults. It also suggests changes in policy that will improve service delivery. I especially appreciated the focus on the need for bereavement care after the death of a child.
Click here for more information.
Updated: 08 January 2013
Martin Loučka (FHM) who is a Research Associate undertaking a PhD from the Czech Republic, based at the International Observatory on End of Life Care, has been awarded the top prize for a lecture on 'Measuring the development of Palliative Care across the World: Methodological Challenges' in the 2012 International Palliative Care Network Conference (an online US based conference). Martin's research which is designed to improve methods for international comparative analysis in palliative care, has been funded by an EU FP7 Marie Curie training awarded call 'EURO IMPACT'.
Click here for more information.
Updated: 07 January 2013