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Even by the Mail’s Standards, this is Low

30 Nov, 12 | by Iain Brassington

The Liverpool Care Pathway provides a rubric for managing the care of the terminally ill as they approach death.  A helpful pamphlet explaining what it is and what it does is available here.  Ideally, I’d quote the lot; but for the sake of efficiency, I’ll make do with an edited quotation:

What is the Liverpool Care Pathway (LCP)?

The LCP is a pathway/ document that outlines this best care, irrespective of your relative/ friend’s diagnosis or whether they are dying at home, in hospital, in a hospice or a care home.

Medication/ treatment

Medication will be reviewed and any medication that is not helpful at this time may be stopped and new medication may be prescribed so that if a symptom should occur there would be no delay in responding.

It may not be possible to give medication by mouth at this time, so medication may be given by injection or sometimes if needed, by a continuous infusion by a small pump called a Syringe Driver, which will be tailored to individual needs.

It may not be appropriate to continue some tests at this time; these may include blood tests or blood pressure and temperature monitoring.

The staff should talk to you about maintaining your relative’s/ friend’s comfort; this should include discussion regarding position in bed, use of a special mattress and regular mouth care. You may want to be involved in elements of care at this time.

Diminished need for food and drink

Initially, as weakness develops, the effort of eating and drinking may simply have become too much and at this time help with feeding might be appreciated.

Your relative/friend will be supported to take food and fluids by mouth for as long as possible.

When someone stops eating and drinking it can be hard to accept, even when we know they are dying. It may be a physical sign that they are not going to get better. Your relative/friend may neither want or need food and/or drink and decisions about the use of artificial fluids (a drip) will be made in the best interests of your relative/friends for this moment in time. This decision will be explained to you and reviewed regularly.

This can be paraphrased further: medically futile treatment may be withdrawn; the main criterion for administering drugs will be symptom alleviation rather than life extension; some testing may be discontinued; it’s possible that there’ll come a point when artificial nutrition and hydration are no longer in the patient’s best interest, and they might be withdrawn if and when that point is reached.

None of this is particularly cheery; but death rarely is.  The LCP simply recognises that there are some times when aggressive treatment – or very much treatment at all – simply isn’t worth the candle, and advises on how to manage such situations.

The LCP found itself under attack from the Daily Telegraph at the end of October, with the suggestion that it might put patients at risk, on the basis that NHS trusts were being rewarded financially for putting patients on to it.  This followed reports that some medics were equating it with euthanasia, on the grounds that statistical evidence shows that people live longer when not on the pathway.  Of course, that should hardly be a surprise given that implicit in the whole idea of the pathway is the idea, borrowed from palliative medicine, that fighting to keep people alive isn’t always desirable.  (The financial incentives bit is, I’ll admit, a bit strange – but it could be something as simple as the LCP being recognised as best practice, and funding decisions being used to incentivise that – or withheld if best practice isn’t followed.  Still: that’s just a guess, and there’s a whole book’s worth of stuff about NHS funding that I don’t understand.)

Anyway: that wasn’t going to stop the Daily Mail giving its own version of the story, and  running its own human prurience interest piece about someone who was put on the pathway, but fed by her family, and who survived – and then another two days later.  Melanie Phillips joined in, too, with the nuance for which she’s famous.  Naturally, that someone on the pathway might go on to recover is not all that surprising: medicine is an imperfect art; but – vitally – it doesn’t follow that decisions to use the LCP are unreasonable or indefensible at the time.  Rather, best practice would simply be to keep these decisions under review – as the Marie Curie Palliative Care Institute Liverpool, which pioneered the LCP, admits:

The patient’s condition should be continually monitored in order to assess the patient’s needs and to give support to the relatives/carers.  Clinical experience has shown that in around 3% of cases, the patient’s condition can improve and the patient is no longer deemed to be in the dying phase. A full reassessment of the patient is then undertaken and an alternative management plan is put into place. The patient’s [sic] whose care is supported by the LCP must be assessed closely by the doctors and nurses at the bedside. LCP Version 12 also includes a formal process for reviewing decision making by the multidisciplinary team at least every 3 days over and above the ongoing assessments of the patient’s condition.

Point is, this looks like a bit of a non-story, unless your standard for clinical acceptability is perfection – and even then, we’d need to know more about rates of aggressive treatments to extend life, and the quality of those lives.  Aggressive treatment simply to extend life mighn’t be morally acceptable in some cases – though it’s much less likely that the press’d complain about that.

Anyway…

The Mail is at it again: NOW SICK BABIES GO ON DEATH PATHWAY, it screams.  My instincts are that any headline in any newspaper - but especially the Mail – that begins with the word “Now” is probably unmitigated scaremongering bullshit.  This article is a rehashed version of the piece from the BMJ to which I linked a couple of weeks ago.  Except…  Well, here’s the Mail‘s version of a key part:

Earlier this month, an un-named doctor wrote of the agony of watching the protracted deaths of babies. The doctor described one case of a baby born with ‘a lengthy list of unexpected congenital anomalies’, whose parents agreed to put it on the pathway. [emphasis mine]

It does sound rather as if the LCP was suggested by medics, and the parents agreed.  But wait!  Here’s the BMJ version:

The voice on the other end of the phone describes a newborn baby and a lengthy list of unexpected congenital anomalies. I have a growing sense of dread as I listen. The parents want “nothing done” because they feel that these anomalies are not consistent with a basic human experience.

Slightly different, what say?

And if you search for the words “Liverpool”, or “Pathway”, or “LPC” in the BMJ article… can you guess how many times they appear?  That’s right.

Almost once.

So what we’ve got, really, is a non-story about the LPC reworked into a scaremongering ZOMG!  Teh evil doctorz is killin ur babies piece of journalism.  It’s all there: shoehorning in the LCP, and renaming it – a recognised “best practice” protocol – a “death pathway”; the alarmist rent-a-scare quotation from the Medical Ethics Alliance; the out-of-context quotations…  We could play yellow-press bingo.

And this stuff does matter: it’s not just a quibble over terminology, or interpretation.  It matters because, like it or not, people do believe what they read in the papers.  At least some of the people reading that article are likely to have a seriously ill child, or to know someone with one, or to have had some contact with serious paediatric illness.  And it’s likely that this kind of story will add to their fear and distress: as if having an ill child isn’t bad enough, the doctors don’t want to treat her but would prefer to starve her to death, and if the doctors don’t want to, the managers will insist that they do anyway, yadda yadda… and added to it utterly needlessly.

Sometimes fear can be warranted, and causing it justified.  But it is not at all obvious – to say the least – that this is one of those times.

On the other hand, causing this kind of distress makes good commercial sense.  It shifts units (and causes people like me to link to the website: kerching!).  It’s a pornography of fear.  And it’s foetid.

Incidentally, Anthony Wrigley, who runs Keele’s MA in Ethics of Cancer and Palliative Care in cooperation with the Marie Curie hospice in Liverpool, and who knows a thing or two about this stuff, notes something else:

The odd thing about the story is it seems internally inconsistent. The Mail is obviously anti-euthanasia but all the critical aspects of the article were about how terrible it is to allow children to die slowly.  At the same time it acknowledge that the LPC was only implemented in cases where further treatment was futile and death inevitable.  The obvious conclusion from this is that active euthanasia is the position the Mail is actually arguing for whilst being explicitly opposed to it.  So, if we ever wanted any more proof that the Mail writes a load of [ballistics] all the time, here is another to add to the pile.

He didn’t use the word “ballistics”, obvo.

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  • http://www.facebook.com/sue.schoen Sue Schoen

    Bravo!!! It won’t placate the people who have convinced themselves we are all murdering scumbags but excellent points, well argued nevertheless!

  • http://www.facebook.com/alica.jones.16 Alica Jones

    Its the fact that it is done without knowledge or consent in 60% of datasets submitted to MCPCIL that should be concerning a few more doctors with ‘Ethics’ degrees -

  • http://www.facebook.com/alica.jones.16 Alica Jones

    The lack of ethnic monitoring is also of concern….the ageism is demonstrated,but the lack of ethnic monitoring is unlawful under the Equality Act…

  • http://www.facebook.com/alica.jones.16 Alica Jones

    Tony Nicholson was ‘actively euthanased’ on it…I think that was (one) of the Mail’s points….ergo: we already have ‘euthenasia on demand’ with a valid advance directive and a complaint of intractable pain. The fact that there is no signed consent form or advance directive in the vast majority of LCP cases to date led them to draw the conclusion that these people appeared to have been ‘involuntarily euthenased’….

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    This is simply not true.
    To euthanise someone means deliberately having set out to end their lives. That’s a world away from halting procedures that are medically futile and potentially burdensome. All the LCP does is provide a guideline to manage that withdrawal.
    Neither do ADs allow for euthanasia. You can’t request to be killed (or demand treatment, for that matter – see Burke): all you can do is state a refusal to accept some or all treatment.
    Finally, (as far as I understand things) consent isn’t required to withdraw futile treatment. In some circumstances it may be politic – but if someone is approaching the end of their life, it’s not obvious either that they’d be capable of signing a form, or that it’d be humane to go pestering them anyway.

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    Whose knowledge or consent?

    The LCP is, by its nature, only applied right at the end of life. It’s likely that the patient will not be lucid, or even conscious, at this point. So that seems to leave the family. But why should they get the final say? Doesn’t the medics’ expertise in the process of dying count for more?

    I’m also not quite sure what you mean by “doctors with ‘Ethics’ degrees”: why is the word “ethics” in scare-quotes?

  • Binding&Hoche

    Why is it likely that the patient won’t be lucid at the end of life Iain – or will be unconcious? If by its nature, the LCP is only applied right at the end of life, why are MCPCIL so firmly asserting it is ‘reversible’, i.e.that you can be taken off it?

    Medics expertise or opinion means damn all to me as a patient – I might have a crappy medic with the expertise of a slug and the ethics of a hyena….my choice is all that matters – my consent -

    And regarding my comment on ‘ethics’ – just because someone has a degree in ‘ethics’ doesn’t mean they have any – any more than a degree in ‘religious studies’ ensures you’re ‘religious’. And a degree in medicine doesn’t makes you any good at it….

    • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

      It’s likely because the LCP only kicks in when a patient’s condition has reached that sort of point. I don’t see the reversibility point.

      And I’m still puzzled by your “ethics” point; you seem to be suggesting that the LCP is by its nature incompatible with “genuine” ethics; but you’ve given no indication of what that might mean, and you’ve given no argument at all for the claim.

  • Binding&Hoche

    ..you have to go to court to withdraw a treatment you’ve started dont’ you?

    • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

      Nope. People often do, but there’s no requirement to continue futile or burdensome treatment.

  • Binding&Hoche

    ..and I think you’ll find that deactivating a defibrillator has been declared an ‘act’ rather than ‘an omission’ in UK case law….

    • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

      Case law is irrelevant when it comes to drawing moral distinctions. Besides: merely deciding in law that something is an act tells us nothing about whether that act is legally – or morally, for that matter – permissible.

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