Dr Dermot J Ward
Whenever I happened to be visiting Dublin over the past few years, I might ask a medical friend or colleague,”Does the ‘Liverpool Care Pathway’ (LCP) register with you?” I can’t remember any recognition response. Just a blank look or negative nod of the head. Actually, at this point in typing this piece I rang a specially regarded and trusted medically informed friend who mentioned having heard something of it in relation to end of life care in the UK but confessed to knowing very little about it.
Perhaps I have failed to note any references to the LCP in Irish Medical Times, which first published this piece, but for the life of me can’t recall any. And, perhaps unreasonably, I can fume inwardly about the LCP as a toxic clinical commonplace in England. You deserve some clarification.
The LCP was developed in the late ‘nineties by the Royal Liverpool University Hospital and the Marie Curie Hospice for the UK (curiously, except for Wales) for the care of terminally ill cancer patients. The pathway to death, as it has frequently been referred to, was later extended to all patients (in the NHS), deemed to be dying.
Alarm bells began to ring openly in 2008 in an article in The American Journal of Hospice and Palliative care which criticised the LCP for its failure to take an explicit position on artificial hydration. in 2009 The Daily Telegraph (DT) declared that the pathway had been blamed by some doctors for hastening the death of some mortally ill patients and possibly masking signs that the patient was improving. Rumbling criticism continued and perhaps understandably physicians in palliative medicine wrote in support of the LCP.
A major source of continuing criticism was the DT. On October 27, 2012 a headline on p6 by medical editor Rebecca Smith announced “NHS begins inquiry into death pathway”, following families having lodged complaints that patients placed on the pathway had been denied food and drink when they were dying. It was also stated that “leading doctors say the procedure is being used to “hasten death” and is based on guesswork”. A National End of Life Care programme was charged with looking at how the “death pathway” was being delivered.
There have been four recurring charges made against the LCP : that whatever the protocols say, families are not being consulted by doctors; that it is impossible for medical staff to predict when death is imminent and so the decision to start the LCP is at best guesswork and at worst a form of euthanasia imposed without consent; that by removing all drips, especially fluids, the diagnosis becomes self-fulfilling; and that the programme’s use of heavy sedation so dulls a patient’s reactions that he or she cannot say a proper goodbye to their loved ones.
On November 3, 2012 the DT quoted Care Minister Norman Lamb, “We will tackle the death pathway”.
Two days earlier the DT Social Affair Editor headlined a piece “Death pathway trusts paid millions”. (like so many politically embarrassing revelation this was obtained under the Freedom of Information Act introduced by Tony Blair who may have reason to regret it). The item stated….”Almost two thirds of NHS trusts using the Liverpool Care Pathway may have received payouts totalling millions of pounds for reaching targets related to its use. Research from the DT shows “about 85% of trusts adopted the regime which can involve removal of hydration and nutrition from dying patients…”.
“The LCP can only work if each patient is fully consulted, where this is feasible, and their family involved in all aspects of decision making”. This clearly had not been been happening.
Please note this was still 2012, with of course Care Minister Lamb was, “Absolutely determined” to tackle the pathway’s failings.
Fast forward to DT, August 3, 2015 and “The new end-of-life guidelines are lethal”, when one of the first doctors to raise concerns about the LCP pushing elderly patients to premature death published what I hope will be the definitive condemnation of the LCP and recent NICE (originally National Institute of Clinical Excellence but morphed by pen pushers into the National institute for Care and Health Excellence, and yet continuing to use the NICE acronym) pronouncements on end of life care which merely muddy the waters further. In achieving his goal Professor Patrick Pullicino (Professor of Clinical Neuroscience at the University of Kent) makes special mention of The Mental Capacity Act 2005, UK, and its designation of a “Decision Maker” and “Best Interest” meeting. The Decision Maker who takes end-of-life decisions could be a nurse. He correctly sees this as effectively usurping the role of the responsible senior clinician and the undermining of centuries-old evidenced based care. He declares the new NICE guidelines continue to use these provisions and trenchantly states that consultants must be restored to full care of, and responsibility for, their patients.
Pullicino considers the diagnosis of who was actually dying was the core problem of the LCP and not at all helped by NICE guidelines whichhe condemns as totally inadequate to make a diagnosis and is not evidence based. This leads back to the LCP risking patients onto inappropriate and potentially lethal treatment.
I cannot overemphasise the importance of of Professor Pullicino’s publication and will end verbatim with its last paragraph. My plagiarism anyway colours so much of the above. My only reservation is that physicians in hospices need special inclusion.
“Evidenced-based medicine is the gold standard for 21st-century health care. The LCP abandoned this and was disastrous not only for patients but for all medicine. All physicians in general hospitals should use only evidenced-based treatments and pathways, and NICE should ensure all pathways meet this standard. Its current proposal certainly does not.”