Last reviewed 8 August 2017
Jef Smith discusses the Liverpool Care Pathway (LCP), what went wrong with it and what should replace it.
The Liverpool Care Pathway for the Dying Patient was developed in the late 1990s to help doctors, nurses, residential homes managers, and other health and care workers provide sensitive and appropriate end-of-life care. It was initially designed for cancer patients but latterly its use was extended to cover the whole range of people in the last stage of their lives.
For a while, from its inception, opinions on the use of LCP were almost universally positive. Assessments based on disciplined research which were published in various learned journals found that doctors, nurses and relatives were agreed that the system significantly improved dying people’s involvement in their medication and care; concepts such as respect, kindness, dignity, communication and emotional support featured prominently in comments.
Alongside these, however, there were also critical voices. Some focused on quite detailed issues such as what emphasis LCP placed, or failed to place, on hydration and whether consent for treatment or the withdrawal of treatment was always properly sought. Others drew attention to the less than totally disciplined way in which the scheme was sometimes administered and even alleged that deaths had been improperly hastened in some instances. Discussions in the press became increasingly angry, fuelled by the worrying revelation in 2012 that many NHS trusts had received incentive payments for meeting LCP targets, a practice which appeared seriously distasteful to most people outside the sometimes heartless world of health service finance.
As a result, Baroness Julia Neuberger was appointed by the Department of Health to lead an independent review of LCP, and her report, More Care, Less Pathway, published in July 2013 reinforced the criticisms and recommended that NHS England should phase out the use of LCP. Its principle finding, however, was that LCP, far from being inherently dangerous or uncaring, had suffered from the fact that in a disturbingly high number of cases it had not been properly applied. Many advocates of the scheme indeed continue to insist that LCP was unfairly blamed for bad practice carried out in its name by staff who had been insufficient trained or were poorly supervised. Nevertheless, by the time of the Neuberger report the name LCP had been irredeemably damaged; it had to go.
The less than adequately answered question was what was to replace it. Neuberger’s recommendation of “an end-of-life care plan for each patient, backed up by condition specific good practice guidance” begged any number of questions. Customised case-by-case practice is of course ideal, but what LCP had striven to provide was a set of basic principles and a framework for intervention around which individual support could be built. In a care home, for example, it is all very well telling relatively inexperienced front-line staff to provide personalised care for a dying resident, but for such instructions to be effective homes need some sort of generally accepted framework of what good practice looks like.
The scrapping of LCP left a void which at least for a while, and some would say for much longer, has seriously set back the quality of terminal care. Belatedly but still very welcome, two major contributions to filling this gap came from Skills for Care (SfC) and the National Institute for Health and Care Excellence (NICE).
Skills for Care Principles
SfC’s 2015 publication Common Core Principles and Core Skills Education and Training Framework sets out both the underpinning values and the competences for workers providing care for adults at the end of life. It describes seven principles, which at a slight risk of overwhelming the subject with words, do indeed highlight for workers in residential homes and others a sound basis for this most demanding area of practice.
Principle 1 requires care to be person-centred. Respect, dignity, choice and independence are preeminent, cultural diversity and spiritual preferences have to be respected, risk management must be proportionate and realistic.
Communication, central to Principle 2, must be “straightforward, appropriate and timely”, again personalised to the individual and reflecting their cultural and spiritual needs. Principle 3 deals with integrated working, workers having “a good understanding of, and respect for, the services provided by their colleagues in other disciplines”, not as easy as it sounds.
Certain words begin to crop up repeatedly in this document. In Principle 4, for example, which demands “good and clear information”, we again come across “straightforward”, a reminder of those shifty evasions in conversations with people close to death which many of us have been guilty of, placing our own fears and embarrassments above the client’s need for candour.
Care needs to be well-planned of course, says Principle 5, with regular reviews — people can and often do change their minds about their care — again good co-ordination with other agencies, and a frank recognition of the conflicts which can arise between dying people on the one hand and, on the other, their — perhaps well-meaning — families and friends. Care workers too have needs and rights of their own, and Principle 6 urges employers to offer sympathetic support and guidance when needed. For their part, employees should not hide, or worse deny, their emotional vulnerability, remaining open to the help from colleagues which enables them to continue functioning effectively.
Finally, Principle 7, again directed largely to employers, calls for “appropriate learning and development opportunities”, and staff are once more enjoined to take up opportunities for improving their practice. The statement of “competences, underpinning values and knowledge”, which follows in the document and which inform SfC’s specific end-of-life care qualifications, is worthy of detailed study. Required knowledge, for example, is listed to include one’s own professional boundaries, the roles of fellow practitioners, professional Codes of Practice, relevant legislation and other statutory guidance, the impact of one’s own beliefs, risk assessment and management, theories of change and loss, and of course person-centred care.
There is insufficient space here to do justice to the equally valuable work NICE has done on end-of-life care. Its guidelines on Care of Dying Adults in the Last Days of Life, published in December 2015, which supplements an earlier (2011) quality standard on general end-of-life care for adults, covers much of the same ground as the SfC document. NICE’s great strength, however, lies in the strictness of the process by which its evidence-based conclusions are reached. The second of its quality statements, relating to “individualised care”, for example, draws on extensive local data collection, though regrettably this information is somewhat skewed by an emphasis on statistics gathered by the Royal College of Physicians on people dying in hospital.
It comes as a relief to take a look at actual good work on the ground. This is conveniently provided by the National Council for Palliative Care (NCPC) which makes a series of awards each year to projects displaying excellence in this field. In 2017 there were 90 entries for its four categories, and I took a particular interest in the award for “effective person-centred co-ordination”, won this year by the Wandsworth End of Life Care Co-ordination Centre.
The Centre brings together four organisations, the Wandsworth Clinical Commissioning group — which also provided funding for this two-year pilot — Trinity Hospice, Marie Curie Cancer Care, and St George’s Healthcare NHS Foundation Trust. Rather than having to go to various care providers separately, dying people and their families have just one point of contact for dedicated end-of-life care — community nursing, daytime health and personal care, overnight nursing care and emotional support, and a range of helpful information and advice.