Treat with care

By Dr Simon Bennett, University of Leicester.

The government has responded to Baroness Neuberger’s report into the Liverpool Care Pathway (LCP) by announcing its termination. The report, More Care – Less Pathway, claimed that 130,000 patients were subjected to the LCP annually. Financial inducements were offered to encourage take-up. Introduced to improve patients’ end-of-life experience the LCP can involve heavy sedation (such that patients can no longer communicate with nursing staff and loved-ones) and the withdrawal of food and water. Popular with medical staff the LCP became feared and reviled by those forced to watch family members die a frightening and undignified death. Instead of easing pain and suffering in too many cases the pathway amplified it. Some of those who gave dying relatives water were admonished by nurses. Campaigns by papers like the Daily Mail hastened the LCP’s death. Too often the Pathway had more to do with euthanasia than care. A frightening new development you might think? Not so. The National Health Service has been here before.

Case 1: On 16 May 1966 the Physician Superintendent at London’s Neasden Hospital issued the following Memorandum: “Respiratory Failure and Cardiac Arrest Resuscitation …. The following patients are NOT [sic] to be resuscitated:- Very elderly, over 65 years; Malignant disease; Chronic chest disease; Chronic renal disease; Top of yellow Treatment Card to be marked – N.T.B.R. (i.e. Not to be resuscitated)”. The instruction was followed for sixteen months … until on 20 September 1967 the BBC made it public. (I cannot think of a better justification for ensuring the British Press remains immune from political meddling). The Minister for Health ordered that the instruction be withdrawn. Some doctors regretted only that the instruction had been committed to paper. They would have continued using Neasden’s NTBR protocol.

Case 2: On 19 February 2012 British newspaper The Independent on Sunday published an article by retired London midwife Joyce Prince. Ms Prince reflected on the time she spent caring for the inhabitants of Shepherds Bush, sixty years ago a tough and impoverished neighbourhood. In the 1940s and 1950s British women lacked many of the freedoms they enjoy today. Lacking education and subject to a paternalistic and sexist culture many had little influence over child-bearing. They had as many children as the man of the house (usually the sole breadwinner) desired. According to Ms Prince working-class women, aware of the psychological and financial stresses of large families, developed a pragmatic (but illegal) method of family planning: they engaged in infanticide. Mysterious deaths were attributed to ‘overlaying’, the women claiming they had suffocated the baby when they rolled on to it while asleep. Ms Prince’s midwife tutor (now deceased) came to terms with the problem of overlaying by locating it in the wider context of poverty, ignorance, patriarchy and exploitation: “Mrs James played an important role in supporting women who had to explain themselves in the courts. She listened carefully and non-judgmentally to their story …. Mrs James never discussed what I can only think now was collusion in infanticide”.

No doubt the NHS staff involved in the practices outlined above believed they were doing the right thing. Nevertheless the fact remains that in each case the NHS failed to live up to the highest ideals of the service. Specifically Primum non nocere (first, do no harm).

The problem with models

The problem with a care model like the LCP is that it subsumes variability within a singular, overarching characterisation. Models average or flatten-out the features of those things with which they are concerned. Financial models flatten-out the complexities of economic life. Care models flatten-out the complexities of human existence. They deny human variability.

Care models like the LCP induce formulaic responses. A patient who is the subject of a care model is treated not as an individual but as an average specimen. The nuances of her/his case are subsumed within an overarching vision of what health professionals assume it is like to be nearing the end of one’s life. Care models depersonalise the treatment process. In extremis they dehumanise it. Care models are authoritarian in nature, their authoritarianism acting on both the patient and the carer. This is why nurses saw nothing wrong with shouting at visitors who gave dying relatives water.

Here is some advice for anyone who comes into contact with the health profession. Never defer to authority. Never take what is said at face value. Ask questions. Get a second opinion. Doctors and nurses are fallible, especially when they are fatigued and have targets to meet. Remember this fact: hospitals can be dangerous places. The World Health Organisation notes: “Roughly one in ten patients admitted to hospital in developed countries suffers some form of medical error”. If that doesn’t persuade you to treat medical advice and ‘care’ plans with a degree of scepticism, nothing will. Usually the NHS does a great job. Occasionally, however, as demonstrated by Neasden Hospital’s 1966 NTBR policy and the LCP, it spawns something sinister.

 

Dr Simon Bennett is Director of the Civil Safety and Security Unit at the University of Leicester.

8 Comments

  1. Posted 16/09/2013 at 15:22 | Permalink

    Angela: you are sadly far from alone…..please join https://www.facebook.com/Against.Liverpool.Care.Pathway ..since when has ‘an infection’ been a ‘terminal illness’ that you treat with dangerous drugs instead of the appropriate antibiotics????? Its wilful neglect and should be recognised as manslaughter ….

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  2. Posted 14/09/2013 at 13:13 | Permalink

    Patient Safety and the Liverpool Death Pathway- in 2006, in response to the enormous number of avoidable deaths caused by Diamorphine injections, the National Patient Safety Agency published mandatory advice on the use of injectable Diamorphine. It read: “This document sets out background information, the actions required, and how to implement these whilst ensuring urgent access to palliative care drugs” and recommended: ” 4 Ensure that naloxone injection, an antidote to opiate-induced respiratory depression, is available in all clinical locations where diamorphine and morphine injections are stored or administered. ”
    …having examined the contents of ALL of the ‘Just in Case’ boxes the Liverpool Care Pathway places in care homes, dementia care homes and people’s own homes across the UK, I found that NONE of them contained any Naxolone at all. Moreover, Naxolone is mentioned in exactly NONE of the documentation for LCP v.11 or indeed v.12, and in none of the prescribing guidelines bearing the ‘LCP’ trademark worldwide. How is it then, that Ellershaw’s invention ever came to be touted as the ‘level of the best’ in palliative care practice – unless of course, espiratory depression and continuous terminal sedation until death were considered to be desirable side effects of its co-administration of Diamorphine and Midazolam …http://www.nrls.npsa.nhs.uk/resources/?entryid45=59803

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  3. Posted 26/08/2013 at 12:17 | Permalink

    See you’re currently supervising a PhD that compares and contrasts team-working in the NHS with that in the airline industry- Liverpool Care Pathway ‘teamwork’ seems to involve one nurse holding the doors open while another kicks all the elderly passengers off mid-flight to give the first class passengers more legroom….

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  4. Posted 23/08/2013 at 00:30 | Permalink

    Fascinating – Superintendent McMath’s memo identified specific groups for NTBR orders.. “The following patients are not to be resuscitated: Very elderly, over 65 years; malignant disease; chronic chest disease; chronic renal disease”.

    Compare this to the advice issued in 2011 to the new NHS commisssioners who were due to take over in 2013 in ‘ACT&EarlytoAvoidA&E’ http://www.endoflifecare.nhs.uk/search-resources/resources-search/publications/imported-publications/act-early-to-avoid-a-e.aspx …p4. identifies those who are to be offered ‘End of Life Care’ only…it reads

    ” For the purposes of this guidance people are
    ‘approaching the end of life’ when they are likely to die
    within the next 12 months.
    This includes people whose death is imminent
    (expected within a few hours or days) and
    those with:
    (a) advanced, progressive, incurable conditions
    (b) general frailty and co-existing conditions that mean
    they are expected to die within 12 months
    (c) existing conditions if they are at risk of dying from a
    sudden acute crisis in their condition
    (d) life-threatening acute conditions caused by
    sudden catastrophic events.

    For some people the appropriate start for end of life care
    might be at the time of diagnosis of a condition which
    usually carries a poor prognosis, for example motor
    neurone disease or advanced liver disease.”

    Just about covers the entire working classes and anyone left who fought in WW2 and needs a bit of work done on them!

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  5. anon
    Posted 23/08/2013 at 00:11 | Permalink

    ..and if you want to see something sinister…look at the Government’s ‘Omega ‘ reports from its ‘end of life care network’…they costed up the ‘bed days saved’ by failing to admit elderly patients to hospital,and then based their entire election-pledged ‘NHS savings by 2015’ on them ..:) Sinister? I think you’re being rather ‘cautious ‘ in your choice of words there! No wonder they refused a Public Inquiry with evidence on oath…

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  6. anon
    Posted 22/08/2013 at 23:25 | Permalink

    By the way Dr Bennett, did you read the ‘Baker Report’?..it was commissioned by the Govt. after the Gosport War Memorial Hospital murders involving Jane Barton. It appears that she killed over 800 patients (not just the 12 who got an inaquest)….Prof.Baker advised the Govt.that all of them needed an inquest each, or a Public Inquiry….so the government buried the report. Its taken Ann Reeves (who’s mother was killed there whilst waiting to go home) 10 years to get the government to release it …you know why? Because the Government’s ‘response’ to this appalling mass murder was to invent a pathway called …..the Liverpool Care Pathway!!! How’s that for ‘risk management and crisis avoidance’? The LCP actually RECOMMENDS the dangerous prescribing practices that Jane Barton used…only speeds up death by adding dehydration and starvation as well as adding midazolam to the diamorphine. A positive boon for those who are genuinely suffering from intractible agony and are only an hour or so from death anyway…but guaranteed to kill those who are not too… Its here….https://www.gov.uk/government/publications/gosport-war-memorial-hospital-deaths-of-patients Mrs Reeves is on twitter at @ann_poppy …seems the NHS always need to have a way of murdering the elderly….if you shut one down, they simply invent another…

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  7. anon
    Posted 22/08/2013 at 23:09 | Permalink

    Look up National Patient Safety Agency incidents and palliative care…..chilling entries for 2008 included mix ups and misreadings of CT scans, with entries that read ‘.. wrong patient placed on palliative pathway.’ We all know what that led to !
    NPSA said the hospitals were allowed to assess the level of harm done themselves, and that the NPSA just had to take their word for it – the accuracy of these AIRS register self assessments was never independently checked.
    Cheaper than a skip, the LCP ….

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  8. Angela Rowland
    Posted 18/08/2013 at 23:34 | Permalink

    I have just been through watching my mum die after being put on the Liverpool pathway although this name was never used, they told us that my mum who had contracted streptococcus and pneumonia after a hip replacement had no chance of recovering,they told us she would pass quickly and quietly once the antibiotics were stopped and her NG feed tube and canula were out, this was not the case, mum lived for 9 days, on the 6th day mum was awake, smiling and feeding herself, she was the same on the 7th day to until around tea time and she started shaking, she was burning up, i told the sister she needed help she was suffering but he walked away, they left mum to suffer with no fluids, no paracetamol, the nurses were told not to take her obs anymore and if a doctor wasnt available they were not to call outreach again, there was nothing comforting or peaceful watching my mum fighting for every last breath on the 5th of july, no one questioned what they were doing to her apart from me but the surgeon just replied ” your mum had her chance and didnt respond” if they hadnt made so many mistakes in her care and put her through 3 operations that werent on time so she was left nil by mouth for a week this would never of happened, they didnt care from the day she got the infection, she was shoved on a post op ward with no care, she was left on a commode for an hour and then left to fall when she tried to get off it on her own, we had no support through this, im sure it works for some peoples final hours but not for someone suffering from painful infections for 9 days.

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