An opaque code: the Liverpool Care Pathway and a gap in perception

The independent report into end of life care, ‘MORE CARE, LESS PATHWAY: A REVIEW OF THE LIVERPOOL CARE PATHWAY’ has been published. Eagerly awaited, following months of controversy (click on the category below for other posts) , the report contains a paragraph that at first sight seems somewhat trivial…but which I think holds a key to the whole problem,

The Review panel has reluctantly concluded that the term ‘Liverpool Care Pathway’ is most unhelpful: anxious and upset relatives cannot be expected to understand what an ‘integrated care pathway’ is, let alone what it has to do with Liverpool.

                A ‘pathway’ suggests to most people a road that leading somewhere. When someone is ‘put on’ a pathway, it sounds like, as one carer put it, they are being placed on “a conveyor belt to death”. In the context of the debate about assisted dying and euthanasia, some carers have formed the impression that “the pathway” represents a decision on the part of clinicians, in effect, to kill their dying patients, when that is clearly not the case.

[page 17]

The LCP controversy has highlighted many things, not least the prevalence of poor communication at the end of life, but the importance of the ‘perception gap’ between doctors and patients has not received much attention. The two are of course connected. The paragraph reproduced above is all about perception, and I will use it as a springboard from which to explore this aspect of the LCP.

When the LCP was first adopted I found it quite a challenge. This was because its implementation required work. Before the LCP a patient’s final days would, in many cases, just happen. That is not to say that we were passive, lazy or negligent…just reactive. Doctors and nurses responded to symptoms and altered the care that was given appropriately. Families reported that their loved ones were in pain, we prescribed some morphine or a sedative.  Often, because our minds had not been focussed on the possible burden or futility of ongoing medical treatments (such as antibiotics, infusions or tubes) they would continue by default. The LCP ensured that these factors were anticipated, so the patient did not have to wait for pain killers or go through unnecessary interventions.

But the LCP was a ‘thing’ to be ‘implemented’. And, like any new or different form of treatment, it required discussion. So I found myself sitting down with families who were often bleary eyed with tears or outright fatigue, to introduce a whole new concept. It felt uncomfortable – describing it, justifying it, ‘selling’ it, this Pathway, when the family were under the impression that their loved one’s journey was nearly over. Another pathway, another plan, another change…

My initial thoughts about the LCP were, ‘Why? We’re doing it already. This just turns dying into another booklet…’ But its benefits became clear, and I will not describe all of them here. Because I saw those benefits I concluded that the work of describing and explaining it to families was worthwhile. It put them in the picture. It ensured that the ground was prepared for the adjustments that might be made around the bedside; the drip that might come down without being replaced, the blocked cannula that might be removed without being re-inserted, the feeding tube that might become coiled in mouth and taken away without being re-passed. Before the LCP such changes or omissions would have been discussed, of course, but now the philosophy of care, of minimising burden, was out in the open. But the work had to be done.

The work was complex. It was nothing less than a crash course in the pathophysiology of dying, the concept of treatment burden, the ’double effect’ of opiates… all the while remaining sensitive to individual circumstances. Doctors are used to such conversations, but now there was another step…to encapsulate those principles of palliative care and present them in a new package, the LCP. Here it is. Strange words. As that paragraph from the report suggests…Liverpool – why?, Care – that’s easy, Pathway – what? Well it’s just a name…it means nothing. The important thing is what it means for your relative.

The acronym became familiar to doctors and nurses. In fact it became a shorthand for ‘final days of life’. He’s on the LCP. She’s for the LCP. Don’t you think it’s time for the LCP doctor? Such phrases were not signs of a callous attitude, but instances of medical shorthand. Our conversations teem with them. And overnight, when junior doctors were called to see dying patients, it became common for that shorthand to become manifest. The LCP could be ‘started’ at 3am, unknown to the family. All it meant was, the patient is dying. It formalised the clinical impression. But was it too easy? It is quite possible that such automaticity led us to underestimate the gap in perception between us and our patients’ families. What became shorthand for us became an impenetrable code to families. Codes suggest secrecy, sacerdotalism, an imbalance of power, decisions made without discussion.

But if we did the work, made the time to talk families through it, there was no problem. So what happened? It would seem that on numerous occasions the work of talking was squeezed out, while the implementation – all those adjustments, all those omissions – remained. The ground was not prepared. The code was applied, but the explanation was not given. Thus, as described on page 22 of the report,

As if caught in the midst of a perfect storm, relatives and carers would discover that a previously sentient person was now semi-comatose. They were told that, following an overnight decision by a relatively junior clinician, this patient had been ‘placed on the pathway.’

 

This is the gap in perception. I, a doctor who is well used to seeing patients die, would interpret such a change in conscious level as the natural progression in a patient’s terminal illness, and the LCP as being no more than a corollary to this, a way of organising his care… but in the eyes of his family there has been a deterioration COINCIDENT IN TIME with a NEW TREATMENT. How could any reasonable lay person not assume that the LCP had led to the deterioration? Without the work of explanation the LCP is therefore at best opaque and at worst, to some who feel vulnerable or poorly served by the very hospital in which their loved one failed to recover following an acute admission, outright sinister.

This excerpt crystallises another gap in perception, in the area of consent;

                ‘No one explained anything to us about what would take place once the Pathway was implemented, or what would happen otherwise. We weren’t given anything to read and, as far as I can remember, the issue was raised so tentatively by the doctor and nurse that at the time we were simply unaware that we had taken such an important decision.’ [page 24]

 

The concern is echoed in one of the panel’s conclusions,

From the submissions of evidence that the Review panel has received, it is clear that one of the central issues causing difficulty seems to be some misunderstanding and uncertainty over whether deciding to implement the LCP is a treatment decision that requires the patient’s consent (if the person has capacity) or requires the decision to be taken in the patient’s best interests (if the person lacks capacity). [page 23]

Decision. The leather-skinned, busy, functional doctor in me reacts to this. Decision? I know that the LCP was designed with nothing more than comfort and dignity in mind, elements of care that should not require shared decisions or consent. But the empathetic, reflective doctor in me accepts that because the LCP appears to represent a change in treatment, every effort must be made to carry the family along in complete and explicit agreement. There is no point harping on about whether consent or assent are legally required. If the conversation is had, if the work is done, the gap in perception will be filled with words and mutual understanding. But the work has to be done.

Why do I use the term ‘work’ so much? It sounds churlish and reluctant. I use it because I think we need to prioritise the role of the conversation, rather than let this seemingly soft side of medicine give way to the never-ending, ever more urgent  list of hard tasks that our doctors, junior and senior, must accomplish in an average day. As the flow of acute admissions increases, as our patients’ degree of frailty increases with the average age of the population, we have to come up with better ways of organising that ‘work’.  The report’s introduction concludes with this entirely appropriate comment,

We feel strongly that if acute hospitals are to deal with dying patients – and they will – whether or not they are using the LCP – they need to treat patients, their relatives and carers with more respect. Hospitals and other institutions need to make more time available to them at any hour of the day or any day of the week. We know that hospitals are often short staffed, and that senior staff may often not be present at night, over weekends, and on Bank Holidays. This is perceived by many as one major cause of poor levels of care and communication. In order that everyone dying in the acute sector can do so with dignity, the present situation has to change.

Unless we can find the time to talk, at length, gaps in perception will persist, and our good intentions will continue to be misconstrued.

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3 comments

  1. The LIverpool Care Pathway might have been an Opaque Code but for those like myself whose loved ones were placed on it without consultation or adequate diagnosis of a terminal illness it was little more than a Code Red. It was also being “sold” not just to vulnerable, unsuspecting relatives but as a brand across the world which means that somewhere, someone was making money out of it alongside the generous financial incentives for its use to cash-strapped NHS Trusts. The real gap in perception is the denial experienced by those who continued to support it despite reports of the wide-spread suffering it was causing. It’s now evident that those initial reports dismissed as “scaremongering” in the press were not only very real but have shocked the independent inquiry who have now, thankfully, called for it to be scrapped. I hope we can keep the beneficial aspects of end of life care while removing the loophole via dehydration that opened the door to deaths based on subjective decisions, often by junior doctors and poorly trained staff, on dying and “quality of life” in a system “with a black hole where its heart should be”. The NHS is now being forced to look at its narcissistic self on a daily basis by the public who use it and had trusted it to deliver quality care – if it doesn’t like the reflection it’s time for radical change and not discussions about good intentions in the face of the most shameful episode in palliative care in living memory.

  2. As one of those who’s ‘perception’ a non terminally ill relative was killed with it (substantiated by 4 expert witnesses, a post mortem, immunohistology), I’d say the only person ‘in denial’ about what shits you have in medicine and nursing nowadays was you.

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