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This can be paraphrased further: medically futile treatment may be withdrawn; the main criterion for administering drugs will be symptom alleviation rather than life extension; some testing may be discontinued; it’s possible that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come a point when artificial nutrition and hydration are no longer in the patient’s best interest, and they might be withdrawn if and when that point is reached.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