Managing clinical uncertainty in palliative and end of life care

South LondonGeneric Health Relevance
Start Date: 1 Jan 2017 End Date: 31 Mar 2018

Around 500,000 people die per year in the UK, with around half of them dying in hospital. However, most people say they want to die at home. Too often this does not happen because there is little discussion between patients, families, and health care professionals about what patients want.

It is particularly difficult for health care staff when they are uncertain about whether a patient may recover and are concerned that they may only have a few months left to live.

In response to this, a new approach called the AMBER care bundle was developed at Guy’s and St Thomas’s NHS Foundation Trust to care better for hospital patients whose situations are clinically uncertain. The care bundle encourages staff, patients and families to continue with treatment in the hope of a recovery, while talking openly about people's wishes about where they or their family member might die. The patient’s status and their wishes are revisited daily.

Palliative and end of life care researchers at CLAHRC South London have carried out a small study to explore the AMBER care bundle and observed some benefits as well as areas of concern. Dr Jonathan Koffman, who led this study, says ‘Before more hospitals use the AMBER care bundle it is important that we rigorously study whether it improves care or not’.

Together with colleagues from the Cicely Saunders Institute and the University of Cambridge, Dr Koffman is conducting a 15-month feasibility study to compare the care bundle with usual care. This study, which was adopted by the CLAHRC in December 2016, developed out of extensive discussions with the Cicely Saunders Institute PPI group.

Dr Jonathan Koffman