Project title:
Understanding Hospital Admissions Close to the End of Life (ACE) Study
Type of research:
Applied research
Background & Scientific Rationale:
Where patients die, and whether that place is their choice, reflects how we view and care for people at the end of life. 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, occur at points of crisis and can involve multiple decision-makers, particularly when patients are elderly and have illnesses in which prognostication is difficult. Most of the limited research concerning such hospital admissions has been quantitative in nature. The ACE (Admissions Close to the End of life) study conducted a qualitative investigation of the decision-making processes of community, ambulance and hospital healthcare professionals involved in such admissions, and also gained the perspectives of next of kin after the death.
Research aim:
The study aimed to understand the factors that influence decisions to admit adult patients with a range of potentially life-limiting conditions to hospital, who subsequently die within three days of admission.
Methods:
- A systematic literature review of factors leading to hospital admissions close to the end of life.
- Retrospective case studies of recently deceased patients identified through hospital bereavement care services, with healthcare professionals from community and acute settings involved in the admission identified from hospital records. Up to five professionals were interviewed concerning each case shortly after the death with the deceased patient’s next of kin approached for an interview after 6 months.
Key findings and outputs:
Results:
It is unknown what proportion of patients prefers to die at home or elsewhere. Reported preferences for place of death often exclude the views of those with no preference or not asked: when ‘missing data’ are included, they supress the proportion of preferences for all locations. Caution should be exercised if asserting that most patients prefer to die at home.
The findings have significant practice implications for how end-of-life care is measured and have been discussed by senior policy officials. In December 2015 evidence from the study was used to inform discussions with Department of Health officials about the importance given to place of death as a quality marker. Specifically, findings fom this study and those of other academics dissuaded policymakers from using ‘death in usual place of residence’ as an ambition target for future end of life care provision. The discussion also prompted further consideration of alternative metrics for measuring patient choice in end-of-life care.
Hospital admissions for end-of-life patients, particularly those who die shortly after being admitted, are also recognised to be an international policy problem. How patients come to be transferred to hospital for care, and the central role of decisions made by ambulance staff in facilitating transfer, are under-explored. The study found that Ambulance interviewees were broadly positive about enabling people to die at home, provided they could be sure that they would not benefit from treatment available in hospital. Barriers for non-conveyance included difficulties arranging care particularly out-of-hours, limited available patient information and service emphasis on emergency care.
Publications:
- Morris ZS, Fyfe M, Momen N, Hoare S, Barclay S. Understanding Hospital Admissions Close to the End of Life (ACE) Study. BMC Health Services Research. 2013 March 11; 13;89. doi:10.1186/1472-6963-13-89 (PDF)
- Hoare S, Morris ZS, Kelly MP, Kuhn I, Barclay S. Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death. PLoS One. 2015 Nov 10;10(11):e0142723. doi: 10.1371/journal.pone.0142723 (PDF)
- Hoare S, Kelly KP, Prothero L, Barclay S. Ambulance staff and end-of-life hospital admissions: an interview study. Palliative Medicine. 2018. doi: 10.1177/0269216318779238 (PDF)
For a ‘BITE’ sized summary of the research, please see
Related News:
- Press Release: Missing Data Complicate Picture of Where Patients Choose to Die
- Poster: Coordinating death: Exploring healthcare professional interactions in the hospital admissions of patients close to the end of life. Presented at The British Sociological Association annual conference 2016.
- Findings also informed the NIHR Dissemination Centre (2015) Themed Review. Better Endings: Right care, right place, right time.
For further information on this project, contact Sarah Hoare at seh91@medschl.cam.ac.uk or Dr Stephen Barclay at sigb2@medschl.cam.ac.uk .
