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
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
Complicated grief prevalence in adults aged 65 and over
Elderly people (those 65 +) are more likely than any other age group in the UK to experience the loss of a close family member or friend. Bereavement experience and support needs of older adults have been largely neglected due to the assumption that bereavement is “less” problematic in old age than in other life stages. There is increasing awareness that the negative impact of bereavement for older individuals can be greater than for younger adults … more
Fatigue in teenagers and young adults treated for cancer
This is the topic of the MD of Dr Anna Spathis. The study involves a systematic literature review, a multicentre electronic survey, and a qualitative intervention co-design study aiming towards a trial of a non-pharmacological intervention.
Frail older carers in palliative care
Tessa Morgan‘s PhD study of the experiences and role-perceptions of lay carers of people approaching the end of their lives who are themselves older and frail. The study includes: 1) a systematic review; 2) in-depth qualitative interviews with people aged 75 and over whose partner is receiving palliative care; and 3) longitudinal analysis of the Cambridge City over-75 cohort data, examining older peoples’ caregiving trajectories over time.
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
“Prepared to Share?”: Patient data sharing in complex conditions and at the end of life
The “Prepared to Share?” study is about sharing patient data across healthcare settings and professional boundaries, in the contexts of complex conditions, advanced and progressive disease, and /or at the end of life. While the majority of patients and the public believe that we have a unified NHS record or that patient data sharing works as effectively as online banking or social media, this is not the case. Each healthcare setting has … 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
Where do most people prefer to die?
A systematic literature review (Hoare S et al. 2015) of patient preferences for place of death concluded that we should be cautious about stating that most patients want to die at home. The review identified significant missing data, because in many cases patients’ preferences were not recorded. When this data was included in analyses, it was not known where most patients wanted to die. Despite these findings and research of others, where patients die continues to be used in policy and practice as a metric of quality in end-of-life care. In collaboration with local and national colleagues, the research team have submitted a proposal to establish a research network to identify more accurate alternative end-of-life care metrics.
Studies with a new home
The ambitious programme of work on breathlessness was first started by Dr Morag Farquhar as an NIHR Career Development Fellow in Cambridge. It was a collaboration between Cambridge, King’s College London and RAND Europe. Morag is now a close collaborator in her role as Senior Lecturer at the University of East Anglia.
Living with Breathlessness
Chronic Obstructive Pulmonary Disease (COPD) is a chronic, incurable, progressive, respiratory condition with a high symptom burden. The Living with Breathlessness study is a programme of work that seeks to provide new evidence on the trajectory of care needs and preferences of patients with COPD and their informal carers … more
Learning about Breathlessness
This study aims to develop an evidence-based educational intervention for informal carers of patients with breathlessness in advanced disease. It uses a mixed method four-stage design synthesising a triad of expert sources: (i) systematic review (ongoing review to identify the key format, timing, and delivery modes of carer interventions), (ii) informal carer expertise, and (iii) clinician expertise … more