The Liverpool care pathway: a cautionary tale

After a six month independent review commissioned by the minister of state for care support, Norman Lamb, a series of recommendations has been made to improve end of life care in England.1 The review, led by Julia Neuberger, was prompted by press reports of poor end of life care associated with the Liverpool Care Pathway for the Dying Patient (LCP). The review panel concluded that in the light of numerous accounts from bereaved family members of poor care associated with the LCP, and without strong evidence of the pathway’s potential benefits or harms, use of the LCP could no longer be justified. The panel recommended that the pathway should be phased out, and replaced within six to 12 months by individualised care plans and condition specific guidance.2

If used appropriately, the LCP can provide a model of good practice for the care of dying patients. However, undoubtedly some patients have received poor care in association with the pathway. The review panel was told of many experiences where communication was inadequate and patients seemed to have been over-sedated or denied food and drink.

Was this a failure of the paperwork or of its implementation? If implementation and training are key, would investment in these areas—rather than developing guidelines from scratch—be a more efficient use of resources? The lack of strong evidence of the LCP’s benefits undermines this argument. However, the converse is also true: the absence of prospective evidence of harm should caution us against the assumption that simply withdrawing the LCP will improve end of life care.

Ultimately, the decision to phase out the LCP was made on the basis of little more than an accumulation of anecdotal evidence. Without independent prospective evidence from controlled trials, the LCP became unusable. This should serve to warn us of the dangers of the national implementation of tools that are not properly evidence based. The recommendation by the panel to phase in condition specific guidance over the next six to 12 months should therefore be approached with caution. It is imperative that we do not repeat the same mistakes, and introduce new guidance without first testing it properly.

Correspondingly, the panel strongly recommended the need for investment in research, into both the biology and the experience of dying. Recent data from the National Cancer Research Institute show that in 2012, of £507m (€588m; $781m) spent on cancer research, just 0.31% went to end of life care.3 In non-cancer conditions, spending on end of life research is likely to be even less. A stronger evidence base is needed to guide both policy and practice in end of life care. For such research, evaluation of patients’ and families’ outcomes, including their experience of care and quality of death, is essential; analysis of process is not an adequate proxy.

Retrospective national surveys of the bereaved consistently report that the quality of end of life care is poorer in hospitals than in hospices.4 The well intentioned aim of the LCP was to bridge this gap by distilling the key elements of end of life care from the hospice setting, and transforming them into a series of prompts to guide care in hospitals and across community settings. But dying can be a complex process, and requires individual treatment decisions, with skilled staff, frequent senior review, and a supportive environment. By reducing end of life care to a series of prompts, did the LCP over-simplify the care of dying patients? Did the pathway’s paperwork become a substitute for thought and care? Certainly, it seems possible in some cases. The LCP was rolled out rapidly across England as a key part of the National End of Life Care Programme and the End of Life Care Strategy. During this process, what was intended as a guide may have become interpreted by some as a protocol.

The hospice movement has shown us that it is possible to provide good care to people who are dying. The failure of the LCP has demonstrated that translating this care to other settings is far from straightforward. Publication of the review should be used as a catalyst to improve end of life care, through research, education, and investment in infrastructure. Healthcare professionals need to be provided with the knowledge, skills, and attitudes required to care for dying patients. In addition, they need a system that allows them time, continuity, and sufficient resources to support this care 24 hours a day, including access to senior support and specialist palliative care advice. The ability to communicate uncertainty and share decision making with patients and families is essential.

This is a cautionary tale. The LCP, once suggested as a model of good practice by the Department of Health, General Medical Council, and National Institute for Health and Clinical Excellence in the United Kingdom, is being phased out. It improved the deaths of some patients, but has been the focus of profound grief and regret for others. The independent review has made wide ranging and valuable recommendations to improve end of life care, with implications for healthcare practitioners, commissioners, and policy makers. As Neuberger and other members of the review panel identify, for end of life care to improve, we need to shift the focus away from process, and towards outcomes and experiences of care—as reported by patients, their loved ones, and carers.