End of life care definitions and triggers for assessment: a summary and discussion of the literature

This report was commissioned by the NHS National Programme Director for End of Life Care in 2008 to inform the development of national policy regarding end of life care prior to the controversy surrounding misuse of the Liverpool Care Pathway (Ellershaw and Wilkinson, 2003) and its subsequent discontinuation from use in clinical practice. It was situated on the Department of Health’s webpages for end of life care until taken down following internal reorganisation of the website and the redistribution of responsibility for end of life care within the National Health Service some years later. The subject of end of life prognostication was as sensitive then as it is now however, although in many respects, it is much more visible as a subject for social, political and academic debate these days, not least because of the many examples contained within subsequent reviews of the Liverpool Care Pathway’s misuse by clinicians or practitioners who failed in some instances to fully understand the importance of ‘diagnosing dying’ before putting individuals onto the care pathway, and their failure to heed the very first rule of its use, namely; that such decisions should always be discussed with those who were dying and their close family members before putting them on the pathway wherever possible.

The majority of clinical interventions contained within the Liverpool Care Pathway for the Dying were, and continue to be clinically sound when used appropriately; although the evidence base for some of them remains sparse though it is an area of practice which continues to be under-researched even to this day. The main problem outlined in the wake of the Liverpool Care Pathway controversy lay in the inability of clinicians to prognosticate accurately which, when combined with a natural aversion to having difficult conversations with patients and family members, and the lack of investment or interest in palliative and end of life education led to inevitable mistakes occurring. I still recall the evident satisfaction of one manager who called to explain why she was withdrawing her staff from an end of life programme I was running because the ‘LCP’ was being introduced into her areas and she thought that was all that was needed to provide good end of life care. We clearly know better now.

The review undertaken was neither funded nor intended to be a comprehensive systematic review of the literature, but rather a twenty-page summary and starting point for discussion about the way in which we recognise that someone is dying and how we could or should respond to that fact. The need for discussion is as pertinent today as it was then, not least because of the fact that more patients and family members expect us to have answers to these questions, though clearly this is still a work in progress for many of us and will continue to be until we fully understand the benefits of having such conversations with them.

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