A sad day for palliative care

Three weeks ago I wrote about my dismay at the Daily Mail’s attack on the Liverpool Care Pathway. This week Baroness Neuberger’s team has published its report: “More Care, Less Pathway.” Amongst its recommendations is this:

The name ‘Liverpool Care Pathway’ should be abandoned, and within the area of end of life care, the term
‘pathway’ should be avoided. An ‘end of life care plan’ should be sufficient for both professionals and lay
people.
Unsurprisingly the Mail is gloating over its victory:
  • Ministers order Liverpool Care Pathway to be ditched within a year,
  • Review by Baroness Neuberger reveals how end-of-life treatment was used as an excuse for appalling levels of care
  • Families were not told their loved ones were on the ‘pathway’ to death

The Mail has been leading a campaign against it…

I stand by every word I wrote three weeks ago. I am quite disappointed by how much the report has pandered to the Mail. If you read the comments sections of my last post, you will see many of the commentators are strongly opposed to the LCP. Whilst I think many of the comments are misguided, and just plain wrong I have not moderated any of them. (Unlike the Mail website which always blocks all of my comments posted as ‘alienfromzog’). I want to take this opportunity to respond to the comments, to the report and to the Mail. My main frustration is that when you read what people think caring for the dying should involve, it’s often words like “Caring,” “TLC” or “Individual” are used. Similarly many relatives say they want good communication. What is so frustrating is that this is precisely what the LCP is. What it’s for. If you don’t believe me , read this: Marie Curie Example LCP documentation.
It took years to recover from the damage done to the vaccine program by the Mail’s irresponsible reporting – and we’re still not there yet. This is why the Mail is so malevolent. And yes, I do blame the Mail in part for the children who have died of measles. Years of hardwork, research, evidence and education – all undone by Melanie Phillips and her malicious publication. And who suffers? The most vulnerable in society. There have been various articles and blogs written to defend the LCP. In all of them that I’ve read, they begin with an acknowledgement that the LCP used inappropriately has led to many of the problems reported in the press. I have not done that and this is deliberate. I am not pretending that bad practice does not occur. It does – in all areas of healthcare and all healthcare systems. I will always condemn bad practice but the idea that not using the LCP pathway properly means there’s a problem with the LCP is ridiculous. Moreover, by beginning with such acknowledgements I believe that all these articles and also the Neurberger report has conceded too much ground – allowing the LCP critics to claim victory.
Perfectly preventable problems of communication between clinicians, relatives and carers
appear to account for a substantial part of the recent controversy and unhappiness
surrounding the LCP.
I care about quality of care. Abolishing the LCP will make the Daily Mail happy. It will make the government look like they’re doing something and will almost certainly lead to less-good care. Almost without exception, the critics have said “Care of the dying should be….” and what follows that, as I said above, is in the LCP. So, in order to improve care we plan to abolish a tool that works when used properly rather than addressing the issues that lead to it not being used properly. This is insane. But then, that’s what government by tabloid press always is. My great fear is that scrapping the LCP will mean a return to ad-hoc, ‘hit and miss’ palliative care. This is a major backward step.
I do want to address a couple of specific points as well; firstly the LCP is not euthanasia by the back door. Secondly the payments for use of the LCP to hospitals have been presented as money for killing off patients and this is a gross misrepresentation.
I am against euthanasia. I think giving doctors the power the kill is a grave error – even when people are suffering horribly. Good palliative care is the very opposite of euthanasia. My professional experience – and this is especially true in children – is that we over-treat to the nth degree. We are not good in the profession in acknowledging that we cannot cure and fix everything. Most of us in medicine are ‘fixers’ by nature. A lot of what we do in medicine is nasty and invasive. I have no problem with doing nasty and invasive things to people who will benefit from them. I have major issues with doing nasty and invasive things to people when it will not help. This is about not having another round of chemotherapy when we know it won’t help. This is about not force-feeding people with artificial nutrition as their body shuts down. This is about not doing endless – and increasingly difficult  – blood tests just so we can chart the dying process. Integrating care pathways for dying patients mean we provide comfort and care for people in their last hours and days. This is vital.
The way the NHS funding works is quite complicated. Since the early 1990’s there has been a so-called purchaser-provider split and hospitals then get paid for providing specific treatments. One of the parts of this is so-called ‘quality-care indicators’  (or whatever they’re called this week). Essentially a portion of the money paid by primary care trusts / GP consortia is dependent on meeting the quality indicators. One such indicator was the use of the LCP in dying patients – x% was the threshold for payment. This actually makes a lot of sense; Let us assume that the LCP provides an excellent framework for caring for dying patients. Secondly, all patients who die in hospital are categorised as ‘expected’ or ‘unexpected.’ Death is often not a surprise – i.e. medical staff know that a patient is in the last phase of illness. The internal audit process simply reviewed what percentage of the ‘expected’ deaths were on the LCP when they died – i.e. had the medical team stopped doing invasive procedures on someone or were they still trying to cure? Nothing is absolute and some patients will die unexpectedly. Some people will have a theoretically reversible condition and it is right to keep on treating and yet we still fail – but the evidence is clear, in the majority of cases, we know someone is dying and the focus of care should change. A simple audit of whether the LCP is used of not is a good marker of this. The use of money to drive things is an inevitable consequence of how the modern NHS is structured – a perhaps cynical view that NHS trusts will only do things for financial incentives. On a more practical level, the trusts used this money to pay for specialist palliative care teams to support the use of the LCP and help the other clinical teams use it effectively. The abolition of such payments is a sensible political move but will probably also result in trusts not focusing on palliative care.
Speaking as the son of someone who died in an excellent hospice; speaking as a doctor who has worked on the wards where integrated care plans for dying patients have been used – and as someone familiar with LCP specifically I say this:

This is a very sad day for the healthcare in the UK. There is not a problem with the LCP – there is only a problem with poor practice – rarely. The number of patients who have received excellent care far outweighs the few who haven’t. Not that those don’t matter, they really do but I am sure that the bad practice was worse before we had integrated care for dying patients and will probably be worse again. What’s most annoying is when you read the comments sections or listen to radio phone-ins people talk about what they want end-of-life care to look like and it is precisely what is in the LCP. It is worrying to me that the Daily Mail wrote a couple of sensational and misleading articles and forced this change of policy. Deeply worrying. I know that a small group of people in the late 90s worked very hard to put together the research and develop the LCP. I suspect they are very demoralised. I know a lot of people work in palliative medicine and I expect they are depressed and despondent. All because a lying, evil rag – not even fit to be fish ‘n’ chip wrapping – calls itself a newspaper and constant prints streams of lies and sensation. A sad day.

Dr alienfromzog BSc(Hons) MBChB MRCS(Ed) DCH