It is almost 20 years since ideas about an integrated pathway for the care of the dying were formulated by John Ellershaw and his colleagues in Liverpool. When I first heard the originator speak about it at a lunchtime seminar in Sheffield in November 2001, I recall a two-fold reaction.
On the one hand it seemed a devastatingly simple idea, to lift the skills so carefully honed in the hospice setting, and apply them at scale in the hurly burly of the acute hospital. Yet it also troubled me for reasons I could not quite pinpoint at the time. In the discussion I recall asking: ‘why pathways and why now?’ There seemed to be something of the moment, which was right and purposeful, but also something that was disturbing and potentially worrying.
Could the comfort skills of hospice that promote peacefulness and relieve suffering at the very end of life be transferred to a ‘pathway’ with its own momentum and logic? Would this achieve greater benefit, potentially for far greater numbers than are found in the hospice environment? Should the attempt even be made if it risked adumbrating the fuller, more considered approach that had led Cicely Saunders to focus on ‘total pain’ and the care of the ‘whole person’?
Whatever my musings, the Liverpool Care Pathway (LCP) was soon in the ascendant. As it gathered momentum, it found endorsement from policy makers, it generated quality improvement and research studies, and in due course its ‘roll out’ reached beyond the shores of Britain to several other countries. There was a sense of hubris among its protagonists – ‘What a difference an LCP makes’, enthused one editorial in 2007.
A few years later, when fissures began to appear in the LCP project, it therefore had a long way to fall. It came under critical scrutiny from professional colleagues outside of palliative care. It was attacked by the broadsheet and tabloid press. Then wider public commentary produced hostile reactions that struck at the heart of some of the established principles of palliative care.
It was a perfect storm. An enquiry was called for under the chair of Baroness Neuberger. The committee scrutinised, reflected, heard testimonies from patients’ relatives and sifted the available evidence. After huge endorsement across various jurisdictions, now in the face of sustained scrutiny it was recommeded that the LCP should be withdrawn from use, from 2014.
Prominent voices from the palliative care world offered their thoughts, assessments and opinions on what had taken place. Some opined that they had known all along the LCP enterprise was flawed and lacked an ‘evidence base’. Others, despite its shortcomings, could see no realistic alternative to what it had delivered. In the various plans and strategies that followed, broad principles and values replaced the specificity of the LCP. Policy makers had a less secure peg on which to hang palliative care strategy. The field seemed to be in a strange kind of limbo.
From the social research perspective however, that could not be the end of the matter. As the dust settled on the LCP it seemed more, rather than less, important to work out how it had come into being, what factors contributed to its demise and what the resulting implications were.
A shared interest in these questions brought me back into active collaboration with my erstwhile colleague, Professor Jane Seymour, at the University of Sheffield. In an article published in Wellcome Open Research, we have set out an extended analysis of the LCP story. We have added to the narrative by a careful assessment of the literature on integrated pathways. We have drawn on the social science concept of ‘boundary objects’ to make sense of how the LCP bridged different professional groupings and settings. We have commented on limitations in the implementation that weakened the LCP roll out. Finally, we have added our thoughts on the wider failure to consider the unintended consequences of implementing the LCP, which meant the programme lacked a duty of foresight.
Using the ‘open’ principle of research publication favoured by the Wellcome Trust, our article now awaits peer review. We are looking forward to reading and responding to the comments. Meanwhile, we are embarking on a related endeavour and a new set of questions: what happened to the LCP when it was adopted outside of the United Kingdom, and what were the international consequences for the LCP following the recommendations of the Neuberger report in its homeland?