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
Advance Care Planning in heart failure: a feasibility trial
This study will build on the just-completed doctoral research of Dr Markus Schichtel. It investigated how to optimise advance care planning in heart failure. A funding application for a feasibility cluster randomised controlled trial of a proposed intervention is under review.
Advance Care Planning in hospitalised frail elderly patients
The study includes a systematic literature review and interviews with hospital healthcare professionals to understand their views of the benefits and barriers of ACP with this group. Led by Dr Sarah Hopkins, NIHR CLAHRC Fellow, Cambridge Clinical Research Fellow, Registrar in Geriatric and General Internal Medicine.
Anticipatory prescribing in community end of life care
This work includes several studies led by Ben Bowers, Dr Richella Ryan and Dr Stephen Barclay.
As NIHR CLAHRC Fellow, Ben Bowers conducted 1) a systematic review on anticipatory prescribing in adult end of life care in the community and 2) a qualitative study of GPs’ views, experiences and decision making around anticipatory prescribing. His PhD Studentship, awarded by the NIHR School for Primary Care Research, takes this work further through the Anticipatory Prescribing in Terminal Care (APT) study. It will review 360 patient records for current practice on issuing and using ‘Just in Case’ drugs in the community. You can read how the study will handle patient data here.
Dr Richella Ryan is undertaking 1) a UK-wide study of local anticipatory prescribing policies and procedures and 2) a modelling study of anticipatory prescribing processes, in collaboration with the Engineering Design Centre.
The team also held two workshops on Anticipatory Prescribing (3 Apr 19, London, and 1 May 19, Cambridge) for health professionals and policy makers. Ben Bowers presented on the evidence base for AP, Richella Ryan on current policies and Rob George on the Gosport inquiry. Thirty focus groups were held across the two days to discuss both good practice and safety concerns. The data are currently being analysed.
Future Care Study: Decision-making concerning eating and drinking for people with progressive neurological disease with and without decision-making capacity
The Future Care Study is a research project that is seeking to find out how people feel about their future care, particularly issues concerning eating, drinking and mealtimes as the end of life approaches. We are investigating the views of the public, patients, professionals and family members to learn about issues surrounding nutrition and hydration, mealtimes and decision-making capacity. This information will be used to develop advice to assist those with progressive neurological diseases … more
Just in Case Drugs study
Widespread practice in the UK, ‘Just in Case’ drugs seeks to reduce crisis hospital admissions and improve symptom control at home. To date, no research study has looked into how patients and their informal carers (family and friends) view and experience JIC drug practice. This qualitative study, involving 8 to 12 patients and their informal carers, will aim to address this gap. The study is part of Ben Bowers’ PhD research.
We will ask patients and their carers to take part in one to three research conversations. With patients’ permission, we will look at their GP-held electronic records to discover the circumstances in which the drugs were prescribed and then given. The study analysis will look for patterns and differences in views, experiences and prescribing practices. Findings will be shared widely with local service providers and the public to help inform future practice.
Patterns of prescribing in end of life using Clinical Practice Research Datalink data
Retrospective cohort analysis of prescribing in the final 12 months of life for all CPRD patients who died between 2010 – 2015, with descriptive analyses of temporal trends in polypharmacy and drug classes specific to symptom management (e.g. opioids). The study is led by Amelia Harshfield.
“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
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 in preparation
Stopping oral cancer treatments at the end of life
We are planning future fieldwork, based on findings from our recent systematic review: Clarke G, Johnson S, Corrie P, Kuhn I and Barclay S (2015). “Withdrawal of anticancer therapy in advanced disease: a systematic literature review”. BMC Cancer, 15: 892, doi: 10.1186/s12885-015-1862-0
Recently completed studies
Advance care planning for the end of life in Neuromuscular Disease
The study, led by Andy Hiscock, is on advance care planning in Duchenne Muscular Dystrophy. The systematic literature review found that the literature has rarely addressed discussions concerning the end of life in Duchenne Muscular Dystrophy and related conditions that affect young people and young adults. Interviews showed that end of life care is rarely addressed until severe illness intervenes, at which point the young person’s views cannot be elicited. Parents and clinicians seek to protect them from thinking of their inevitable death in early adult life.
Advance care planning with the frail and elderly
The study includes 1) a systematic literature review of patient and professional attitudes to ACP with frail & elderly individuals and 2) focus groups with GPs in Cambridgeshire to investigate their attitudes to ACP with frail and elderly individuals. It is led by Dr Tim Sharp, a GP Academic Clinical Fellow.