ACE Study – understanding admissions close to the end of life

Click on the image above to download the briefing paper

The End of Life Care Strategy (Dept of Health 2008) suggests that hospital deaths for end-of-life patients  are contrary to popular choice, as well as costly for  the  NHS. Current health policy is to reduce the number of  people who die in hospital, particularly the number of patients who die shortly after admission. These admissions are often deemed to be ‘avoidable’ or  ‘inappropriate’, and may reflect inadequate staff skills,  inadequate staff training, a lack of available care in the community, or a combination of these factors. The decision-making process leading to hospital  admission can, however, be complex, particularly
if patients are frail and elderly. Researchers at the Cambridgeshire and Peterborough CLAHRC are undertaking a study (ACE) that investigates the assumption that hospital admissions close to the end of life are ‘inappropriate’, by taking into account a range of perspectives, including that of health care
professionals, informal carers and patients.

The ACE study is a 3 phase mixed methods study, focusing on the experience and care of patients with dementia,  chronic respiratory disease or cancer. Qualitative data will describe how admissions are understood and viewed, whilst quantitative data will provide a measure of attitudes, perspectives and intentions.

The first phase involves case studies of patients who die within 3 days of admission to hospital, and includes interviews of healthcare professionals involved in the hospital admission. Any admission to hospital involves a series of decisions, therefore both community and hospital staff will be interviewed. The second phase introduces focus groups with patients and commissioners. The focus groups will discuss vignettes that describe situations involving end-of-life patients, with the aim of arriving at a decision on the most appropriate action for the patient, including possible hospital admission. A postal questionnaire based on these vignettes will form the final phase, and will be used to quantify and validate findings from the previous two phases

The ACE study will improve on the current understanding of how end-of-life care decisions are made in practice, and how health care professionals and next of kin view and experience the patient’s admission to hospital. It aims to make policy and practice recommendations for improving end of life care pathways, which will help to ensure that patients are able to die in a place appropriate for their care needs, and according to their chosen preference.

We are undertaking the pilot phase of the ACE Study and have obtained Research Ethics and Research Governance approvals at all sites and are piloting Phase 1 in one hospital. Despite considerable logistical challenges we are finding clinicians are very willing to be interviewed, which augurs well for the main study.

The ACE Study protocol has been published in BMC Health Services Research Morris Z, Fyfe M, Momen N, Hoare S, Barclay S. (2013). “Understanding hospital admissions close to the end of life (ACE) study”. BMC Health Services Research: 13; 89