Dr Sean Hughes, Research Associate, Integrated Palliative Care (InSup-C) and Professor Sheila Payne, Director, International Observatory on End of Life Care, Lancaster University, UK (and President of the European Association for Palliative Care).
Two weeks ago, the hastily commissioned report into the Liverpool Care Pathway (LCP) was published. More Care, Less Pathway (hereafter: the review) made 44 recommendations, the most significant being that the LCP should be phased out in England within 6-12 months. This was a bit of a shock to those of us practitioners and researchers in the palliative and end of life care field. It was clear, once the review had been commissioned, that change was afoot – but few of us expected the demise of such a well-recognised approach to care of the dying.
The LCP was developed with the best of intentions in the 1990s. It aimed to take the best of hospice care – dignity, symptom control, communication, documentation and holism – to hospitals and other care settings. It soon became prominent in guidance on end of life care emanating from government and other national organisations. It had its origins in ‘managed care pathways’ developed in the USA as a mechanism to standardise and improve care, and contain costs.
However, the review panel took issue with the use of the word pathway when used in relation to end of life care. Bereaved family members who gave evidence to the review were unhappy with it. Some perceived ‘pathway’ as a one-way street heading in the direction of certain death and with no opportunity for reprieve. The review contended, rather starkly, that in some instances this amounted to the impression that clinicians had effectively taken a decision ‘to kill their dying patients’.
Some professionals evidently viewed the LCP as a series of prescriptions and instructions. This led, in some circumstances, to a tick box approach to care that compromised clinical judgment and responsibility – never the intention of the LCP. In particular, the review suggested that using the LCP in this way sometimes led to the denial of food and water to dying people. It was this issue that so fired up the tabloid press and which they continued to highlight after the report was published.
But what started as a sensible idea and potentially works in one context may be less applicable in another unless it is implemented with sufficient resources including staff training and sufficient time. Some in the research community also expressed concern that there was a thin evidence base for the effectiveness of the LCP compared with other models of end of life care. This raises an important issue of how new complex health care interventions are tested, the robustness of the evaluative research and the investment in implementation that is needed.
Of broader concern is the notion of ‘care pathways’ themselves. Although the review recommends dropping the term, it is in widespread use in relation to all manner of health and social care – not just in the UK but also around the world. Team members at the International Observatory on End of Life Care in Lancaster University are key partners in an European Commission FP7 funded study called, InSup-C, investigating best practice in integrated palliative care pathways in cancer and chronic disease. The patient and family carer experience will be central to this study. We anticipate that this will ultimately provide a guide for professionals and service delivery organisations in how best to deploy integrated care using the pathway model across Europe.
The Liverpool Care Pathway will now be replaced in England; the devolved nations will decide for themselves. But a close reading of the review report reveals that there is still much to be recommended in the LCP approach. It is the implementation and communication with the public that needs more attention.
From the research point of view the report is clear and uncompromising recommending – among a number of important topics – that the National Institute for Health Research “…fund research into the experience of dying, because there are critical and legitimate social and health objectives and benefits that must be understood, in how patients, their relatives or carers experience care at the end of life.”
Surely, a compelling priority for us all.
This post was first published by Lancaster University on 7 August 2013 and is reproduced here with our thanks.