National and local NHS policy has a major focus on reducing deaths in hospital, particularly deaths shortly after admission, which are seen as “avoidable”, “inappropriate”, “preventable”, expensive, contrary to patient preference and a reflection of inadequate services in the community and in care homes. In practice, the decision-making processes that lead to hospital admission shortly before death are often complex and challenging … more
ARC East of England Palliative and End of Life Care Theme (2019-2024)
Dr Stephen Barclay leads the Palliative and End of Life Care theme of the National Institute for Health Research Applied Research Collaboration (NIHR ARC) East of England. This ambitious long-term (2019-2024) programme of work is focusing on regional and national inequalities in palliative and end of life care, out-of-hours care and the PEoLC needs of the ageing UK population. We are building on our established collaborations with regional universities, service providers and practitioners, working closely with Dr Morag Farquhar, Senior Lecturer at the University of East Anglia.
Jointly, the PEoLC Themes of ARC East of England and ARC South London will lead a national cross-ARC collaboration. The initiative is co-directed by Dr Barclay and Prof. Irene Higginson of Cicely Saunders Institute. Further details to follow soon!
Bereavement support study
This study explores bereavement support (BS) provision in Primary Care and the services available from the bereaved person’s perspective. Interventions such as the those provided by Addenbrooke’s Bereavement Care Service, for example acknowledging grief, offering information, practical advice and the opportunity to discuss the death, are well-received. We will investigate whether these methods can be applied to Primary Care, where there is a scarcity of evidence-based BS guidance … more
CAPE: Community cAre Pathways at the End of life: mapping the pathways to improve care
Of the half million people who die each year in England, less than one in five die at home, yet home is where most would prefer to die. Some receive excellent care, but many do not. The NHS is seeking to raise the standard of care for all and enable more to die at home. The key question this study addresses is: for whom is home death “good”? … more
Feasibility study of Amber Care Bundle (collaborators)
The NIHR HTA programme (National Institute for Health Research, Health Technology Assessment programme) has recently awarded a grant on which the Cambridge team are collaborators. Principal investigator is Dr Jonathan Koffmann, Cicely Saunders Institute, London.
Optimum ‘hospice at home’ services for end of life care (collaborators)
What are the features of Hospice at Home models that work, for whom, and under what circumstances? (PI Prof Claire Butler, Kent; Cambridge second research site).
- Repeat interviews with carers of people at the end of life to measure service use
- Post-bereavement interviews with carers to assess quality of dying and death
- In depth interviews with carers, commissioners and providers to explore barriers and enablers to service provision
Study protocol published (Butler C et al. 2018; https://bmjopen.bmj.com/content/8/5/e021192). Fieldwork underway. Contact Dr Brooke Swash.
Marie Curie “Design to Care”
The UK is undergoing a demographic shift, with people living longer, and towards the end of their life, with increasing frailty and multiple health issues. Coupled with more people living alone and away from family members who often take on important caring roles, there are increasing pressures on health and social care services and the communities in which they live to provide appropriate palliative and end of life care. To meet these changing needs this research explores … more
Patterns of prescribing in end of life using Clinical Practice Research Datalink
Retrospective cohort analysis of prescribing in final 12 months of life for CPRD patients who died between 2010 and 2015. Descriptive analyses of temporal trends in polypharmacy and drug classes specific to symptom management and End of Life Care.
“Prepared to Share?”: Patient data sharing in complex conditions and at the end of life
Data sharing in our daily lives can be so easy. Most people believe that it is the same in the healthcare system. Many think that there is a unified electronic NHS record.
In fact, each organisation has electronic or paper records of its own. IT systems of different organisations generally do not talk to one another. There are legal and ethical challenges that make patient data sharing difficult … more
Realist review of palliative and end of life care in primary care and the community in the UK
The assumption of the realist approach, in the tradition of Pawson and Tilley (1997), is that all programmes work, but for some people, in some contexts and some of the time. Our review aims to specify the “mechanisms” which bring about good end-of-life-care outcomes and the contexts which trigger, support or block those mechanisms. Further details in PROSPERO protocol. Lay summary here. The project is funded by the NIHR School for Primary Care Research and is part of the work of the Evidence Synthesis Working Group.
Realist review of the management of complicated grief in primary care and community settings
Taking a similar approach to the above study, this realist review focuses on the care of people experiencing complicated grief. Further details in PROSPERO protocol. Work will start in the summer/autumn of 2019.
The ‘oldest old’ near the end of life
“The ‘oldest old’ near the end of life” project combines qualitative and quantitative methods to examine end-of-life care issues from the perspective of very old people and their carers. Collaborating with one of the world’s longest-running studies of older old age, the Cambridge City over-75s Cohort (CC75C), we are working with a rare dataset gathered over three decades from following-up a representative population of older people into their last years … more
Studies of CLARHC (Collaboration for leadership in applied health research and care) fellows, Academic Clinical Fellows and medical students
Admissions from care home to hospital in the last week of life
A study of 10 years’ national data from Hospital Episode Statistics and Office for National Statistics Mortality Dataset. Led by Dr Rebecca Farndale, NIHR School for Primary Care Research GP Academic Clinical Fellow.
Patient transfers from hospice or hospital to care home at the end of life
The study includes: 1) a systematic literature review, which revealed a very limited literature with no direct evidence from patients themselves, and 2) a focus group study with five hospice inpatient teams in the Eastern region, which confirmed that staff find the issue of moving patients from the hospice to care homes extremely challenging. The study is led by Dr Tabitha Thomas.
Who does (not) access hospice services, and why?
Systematic literature review concerning inequalities in access to hospices and community-based specialist palliative care services in the United Kingdom, Australia, Canada and New Zealand. Conducted by Jake Tobin, Sebastian Tullie and Alice Rogers (medical students) and supported by Isla Kuhn (medical librarian). Builds on our recent study of the local hospice at home service (Buck et al. 2018, http://dx.doi.org/10.1136/bmjspcare-2017-001367).