Friday 23 November 2012

Liverpool Care Pathway – An Hideous Strength

This article, published in the NLJ, confirms everything that we have been saying and deserves to be given the widest possible coverage.

There is, indeed, a lethal power at work; without sounding too dramatic, it is an Hideous Strength that has been 'floating' ideas for years, subtly altering our perceptions of what is acceptable and unacceptable, of what is right and wrong.

This is the New Law Journal -


A lethal power?

Date: 23 November 2012 
Authors: Jacqueline Laing
Issue: Vol 162, Issue 7539
Categories: OpinionJacqueline Laing addresses concerns about the Liverpool Care Pathway


In 2008, a year after the Mental Capacity Act 2005 came into force, the Liverpool Care Pathway was recommended as the Department of Health’s end-of-life care strategy. Only a year later 300 hospitals, 560 care homes and 130 hospices in England had rolled out the programme. Around 130,000 people a year now are reported to die on the Pathway (29% of the annual 450,000). Freedom of Information Act requests performed by one enterprising journalist subsequently revealed financial incentives to hospitals and care homes that implemented the programme (J Bingham, “NHS millions for controversial care pathway”, The Telegraph, 1 November 2012). Millions of pounds were paid to roll out the regime. The sub-programme, Commissioning for Quality and Innovation (CQUIN), requires that local NHS commissioners remunerate trusts for meeting “Gold Standards” targets in implementing the Pathway. In certain areas, targets are set specifically to increase the numbers of people in their hospital dying on the Pathway. More worryingly, some hospitals had set targets of between a third and two thirds of all the deaths to be Pathway deaths. Certain hospitals doubled the numbers of patients dying on the Pathway in one year. Eighty five per cent of NHS trusts have implemented the programme. Of those, 62% revealed that they had either received, or expect to receive, financial recompense for meeting targets associated with the implementation of the Pathway.

Concerned health professionals insist that there are indeed problems with the regime. Professors Patrick Pullicino (Kent, neurosurgeon), and Mark Glaser (Imperial College, oncologist), and other doctors have suggested that there are both difficulties of diagnosing imminent death with any certainty and grave dangers surrounding the institutionalisation of this relatively recently implemented national end of life regime (P Millard, A Cole, R Bearcroft, G Craig, D Hill & M Knowles, “Deadly one-way street”, 8 July 2012, The Daily Telegraph). Families and doctors tell of having intervened to take patients off the Pathway then to find that the patient recovered. Many were not told their loved ones were on the Pathway while others fear the programme has a homicidal character not acknowledged by its proponents.

The Pathway was, until recently, widely advertised as a model of good practice in the last hours of life by successive national Department of Health policy frameworks. It is praised by health professionals who formulated or have implemented it. Academic articles abound in which professionals using the programme are shown to find it constructive. Indeed, when a patient is clearly in the last hours of life, it may well be that acts recommended by the strategy are entirely appropriate. The problem arises when they are not indicated, ie on the strength of misdiagnosis, or when the sedation-dehydration regime is implemented to satisfy managerial targets or countless other unjustifiable possibilities.

Reversing the burden of proof

Part of the difficulty is that, where a patient is diagnosed as terminal and imminently dying, the combination of morphine and dehydration is likely to undermine a patient’s capacity. Persistent dehydration of even the fittest sedated patient will kill him. This was the problem with the Pathway from the very outset. It reversed the burden of proof, on the strength of a diagnosis that is not always certain, so that an increasingly incapacitated patient would have to speak on his own behalf in favour of water. Even assuming he was healthy enough, in an environment in which the Pathway is normal his pleas may not be heard.

Recent revelations of financial incentives and staggering compliance in rolling out the managerial programme radically alter the debate. Diagnostic concerns in the context of arguably self-fulfilling sedation-dehydration regimes and overarching financial and political pressure to implement the Pathway, suggest that the regime may have acquired a lethal power of its own. This lethal character is almost certainly one that exists independently of the best intentions of those who formulated or apply it. Some of history’s most important lessons highlight the problems of institutionalising programmes that invite homicide and reverse burdens of proof in ways that undermine the vulnerable.

Controlling death

Critics have been warning for many years of the numerous financial, medical, political and research interests there are in controlling death whether passively or actively (see J Laing “Food and Fluids: Human Law, Human Rights and Human Interests” in Artificial Nutrition and Hydration Ed C Tollefsen (Springer, 2002); “Vegetative” State—The Untold Story” 152 NLJ 7045, p 1272; and “Mental Capacity Bill—A threat to the vulnerable” 154 NLJ 7139, p1165).

The independent inquiry sought by Baroness Knight of Collingtree (Hansard, 5 November 2012) and many families, healthcare professionals, journalists, academics and lawyers is both judicious and timely. However useful the Pathway may be in individual cases properly applied, incentivised and managerialised death targets become problematic in the context of uncertain diagnosis, a steadily ageing population, spiralling healthcare costs, and the philosophical dehumanisation of the vulnerable pervasive in contemporary bioethics. The targets themselves constitute improper pressure on healthcare professionals’ employment and livelihood. As such, they predictably invite and rationalise grave human rights abuse with tragic consequences for the defenceless incapacitated in hospitals and care homes.

Dr Jacqueline Laing, BA, LLB (ANU) DPhil (Oxon), barrister, High Court of Australia, senior lecturer in law, London Metropolitan University.

6 comments:

  1. "Recent revelations of financial incentives and staggering compliance in rolling out the managerial programme radically alter the debate. Diagnostic concerns in the context of arguably self-fulfilling sedation-dehydration regimes and overarching financial and political pressure to implement the Pathway, suggest that the regime may have acquired a lethal power of its own. This lethal character is almost certainly one that exists independently of the best intentions of those who formulated or apply it. Some of history’s most important lessons highlight the problems of institutionalising programmes that invite homicide and reverse burdens of proof in ways that undermine the vulnerable.

    Controlling death

    Critics have been warning for many years of the numerous financial, medical, political and research interests there are in controlling death whether passively or actively."


    Thankyou for copying this excellent post of Jacqueline Laing's. The article confirms the direction in which my own thoughts on this issue have been travelling in recent weeks and, in particular, material I've been reading in respect of the the role of the EU's institiutions in the promoting the use of the LCP.

    What has struck me, time and again, is what big business palliative and end of life care and the Liverpool Pathway have become.

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  3. I believe the history of the rather aggressive palliative care ethos that now holds much of the NHS in it's grip may be traced back some years.

    Some 62 years ago, in 1948, Cicely Mary Strode Saunders, a hospital almoner, during her many visits to a 40 year old Polish patient, Ela Majer Tasma, who was dying of inoperable cancer at the Archway Hospital, Highgate, told Ela of her frustration at the inadequate care and pain relief available for him and others like him. Cicely spoke of her dream of a hospice that would properly relieve the suffering of those who were dying.

    Cicely is said to have fallen in love with ela - who had Anglicised his name as David Tasma. David and Cicely had many discussions about Cicely's dream, of what sort of a place it should be and of the sort of care it should provide. They felt it should provide holistic care of the whole patient and allow patients a far better quality of life and better pain relief in their last months than could ever be provided in hospital.

    David (Ela) Tasma clearly loved Cicely and her hospice dream and when he died he left the following - which I've found among the probate records:

    Ela Majer of Archway Hospital Highgate Middlesex died 25 February 1948 probate London 22 May to Cicely Mary Strode Saunders spinster. Effects: £1411 19s

    along with instructions that this sum (worth over £36,000 at present values) was to be used to help Cicely to found her hospice.

    When Cicely eventually raised the money to found her hospice, St Christopher's, she wrote that it's founder was really David Tasma and placed a window in the hospital to commemorate David.

    Cicely, a remarkable woman ( a sort of British Mother Theresa?) was to become Dame Cicely Saunders, founder of UK's hospice movement. She had a wonderful conception of care for those who are dying, one which bears little relation to the regime of terminal sedation and fluid and nutrition withdrawal we so often read complaints about in the press these days:

    "On the whole, patients dislike very much being made to feel "dopey" and, if given the choice in the discussion of the control of their pain, will tend to endure a certain amount of discomfort if they thereby remain alert. Our aim should be full relief combined with a capacity to enjoy friends and food and all the activity that is possible."

    (Cicely Saunders Selected writings 1958-2004)

    So what went wrong?


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  4. I think what went wrong was that the model of quality hospice care was transformed into a cheap, universal model for all hospitals, a model for which the NHS was ill equiped because it was denied adequate funding. As a result, the 25% of NHS Trusts that are said to be almost bankrupt may be in a position where they have no choice but to cut corners.

    I recall studying similar problems with the Mental Health Act (of 1957, Believe). Then Health Minster, Barbara Castle, and her government wanted to transform the legacy bequeathed to them of patients, too often inappropriately locked away for life, in the antiquated, Victorian asylums that had evolved out of the workhouses of past centuries. Barbara Castle truly wished to provide a more humanised form of care.

    The aim of the new Mental Health Act was Care In the Community, to decant patients out of ancient institutions into care homes in the community where a significant proportion, it was hoped, would learn to live independent lives.

    Money, however, was as always the root of all evil and the Mental Health Act was denied adequate funding. Many of the old asylums were nevertheless closed down and patients who had become heavily institutionalised were, as they euphemistically called it, 'decanted' into the community with nowhere to go and little or no support for them.

    The result was an unmitigated disaster.

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  6. I understand that Cicely Saunders retired from St Christopher's Hospice in 1985, although she continued to write and lecture. The then, Dame Cicely Saunders died of cancer in St Christopher's Hospice in 2005.

    In 2001, the Dame Cicely Foundation was founded, devoted to international research and education.

    In 2007 The Dame Cicely Foundation seems to have become The Cicely Saunders Foundation.

    And in 2000 these organisations appear to have been incorporated in the charity and limited company:

    Cicely Saunders International.

    I imagine Dame Cicely would be astonished to see what her vision has now become. St Christopher's Hospice, which grew from Ela Tasma's donation £1,411 (£36,000 in real terms today) and Dame Cicely's tireless work, a limited company and charity with a net worth in its last trading year of £31,061,000.


    * Woops, sorry, I wrongly stated Dame Cicely died in 1995 in my original post: she died in 2005.

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