Katherine Sleeman: Dying people need care, not just care plans

Exactly three months after Julia Neuberger recommended that the Liverpool Care Pathway (LCP) should be phased out in the UK, the first randomised controlled trial (RCT) of the LCP was published in the Lancet. [1] The cluster randomised trial, carried out in Italy among patients with cancer, showed little benefit of the LCP in improving the overall quality of end of life care. Some secondary endpoints—such as breathlessness, and feeling treated with kindness, dignity, and respect—did improve, while coordination of care, family emotional support, and control of pain and nausea and vomiting did not.

The LCP was developed in the late 1990s in an attempt to bring the high quality of care of dying people provided in hospices to the hospital setting. Greeted with enthusiasm by policy makers, it became an integral part of the NHS End of Life Care Plan and End of Life Care Strategy, and within a decade had been cited as a model of best practice by the Department of Health, NICE, and the GMC, and rolled out nationally. The UK government’s independent review was convened in early 2013 following numerous media reports implicating the LCP as the cause of poor end of life care in the UK. The review concluded that in the presence of substantial, though anecdotal, evidence of harm, and in the absence of strong evidence of benefit, use of the LCP could no longer be justified. [2]

In a stinging editorial to accompany the new research paper, Abernethy and Currow apportion much of the responsibility for the national promotion of an untested intervention to “bureaucrats who failed to understand the implication of widespread implementation of an initiative for which the net-effects were ill-defined.” [3] They note that while clinicians are required to justify their practice using the available evidence, all too often, policy makers are not. [3]

The independent review recommended the LCP should be phased out over six to twelve months, and replaced with individualised care plans and condition specific guidance. Given the short time scale (now three to nine months), there can be little hope that whatever is implemented in place of the LCP will be based on strong evidence from RCTs. Therefore it is essential that any new intervention is prospectively evaluated using patient and carer outcome measurement, allowing the quality of care to be monitored, and poor practice to be identified promptly.

So, one piece of paper will replace another. In our enthusiasm for neatly distilling healthcare into flow diagrams and tick boxes, we have perhaps lost sight of a more important question: what is the extent to which any care plan can be expected to improve care of the dying? Care plans can provide knowledge, but seldom will they enhance understanding. And as the LCP experience suggests, knowledge without understanding may paradoxically be detrimental to care.

As appealing as it may be to policy makers to swap one end of life care plan for another, this can be little more than window dressing unless the deeper issues are acknowledged and tackled. No care plan can compensate for a poor environment, lack of time, patchy specialist palliative care support, and inadequate education and training of generalists. Dying is complex, and a good outcome for one patient will be different to the next. We need to move away from the assumption that the dying process can be conveniently slotted into a care plan, and focus instead on teaching healthcare professionals how to care for the dying, rather than how to tick boxes.

Katherine E Sleeman works at King’s College London, Cicely Saunders Institute, Department of Palliative Care Policy and Rehabilitation. She is on Twitter @kesleeman

I declare that that I have read and understood the BMJ Group policy on declaration of interests and I have no relevant interests to declare: Katherine Sleeman has an NIHR funded clinical lectureship in palliative medicine. She splits her time between clinical work as a palliative medicine registrar, and academic work at the Cicely Saunders Institute, King’s College London.

1.    Costantini M, Romoli V, Leo SD, et al. Liverpool Care Pathway for patients with cancer in hospital: a cluster randomised trial. Lancet. 2013.
2    Department of Health. More care, less pathway: a review of the Liverpool Care Pathway. July 2013.
3.    Currow DC and Abernethy AP. Lessons from the Liverpool Care Pathway-evidence is key. Lancet. 2013.