Title: Improving care, assessment, communication and training at the end-of-life (I-CAN-CARE)
Funder: Marie Curie

Abstract: Background This research programme is focussed on improving the care of patients approaching the end of their lives (last days). The programme involves conducting sensitive research in vulnerable patient groups (or with relatives). We will therefore work closely with patient/carer representatives ensuring that our research meets the high expectations of service users. This research programme consists of two work packages (WPs) each with distinct aims. WP1 is concerned with improving care at the end-of-life in patients who are receiving sedatives. Routine objective assessments are not currently undertaken in these patients. Bispectral Index (BIS) monitoring is a non-invasive method for monitoring depth of sedation. It consists of a forehead sensor which collects electroencephalogram information. WP2 consists of three studies exploring ways to improve the accuracy of multi-disciplinary clinical predictions of survival, understanding prognostic communication and improving the education and training of clinical staff. Aims and objectives The overall aim of this programme is to improve end-of-life care for patients and their families by better assessment of dying patients, by improving clinicians’ skills in prognosticating and by understanding how prognoses are communicated. This research programme consists of two work packages (WPs) each with distinct aims. WP I 1. To review and synthesise the literature on monitoring of sedation at the end of life 2. To review and synthesise the literature on assessment of quality of death and dying 3. To assess the feasibility of using Bispectral (BIS) monitoring in dying patients 4. To undertake a randomised pilot study of BIS in dying patients WP2 1. To understand the process by which multi-disciplinary estimates of survival are formulated and agreed 2. To understand the structure and functioning of prognostic communication between health care professionals and the relatives of dying patients 3. To determine whether an on-line training programme can improve the prognostic accuracy of novice clinicians Methods WP1 We will undertake two systematic reviews, one related to the monitoring of sedation and one related to the choice of appropriate outcome measures for studies in dying patients. We will then use a mixed method approach to undertake a developmental, feasibility and acceptability study in 30 patients in the last two weeks of life and their families. We will then progress to a randomised controlled pilot study to inform the design of a large scale randomised controlled trial comparing objective monitoring with BIS (accompanied by dose titration of medication) versus usual care. This will be a two armed study involving 30 patients in each arm. WP2 WP2 consists of three studies. The first study is a psychological research experiment involving approximately 100 clinicians during which participants will be asked to predict the survival of patients from information provided in clinical vignettes. The clinicians will then be provided with “advice” by another professional or impersonally from information provided by a prognostic score, and asked if they wish to revise their judgment. The study will investigate the extent to which prognostic judgment is altered with receipt of advice. The second study will use analysis of audio recordings of bedside discussions between clinicians and carers to explore how prognostic information (and uncertainty) are communicated in real life settings. The third study consists of a randomised controlled trial to assess the effectiveness of an on-line training package to improve clinicians’ prognostic accuracy. How the results of this research will be used The culmination of WP1 will be an external funding application for a large multi-centre study of sedation monitoring and titration. These results will be applicable throughout the UK (and beyond). The results of WP2 will have implications for training of medical students and junior doctors nationally and internationally.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE