So the abolition of the Liverpool Care Pathway now looks a certainty. A rash of negative newspaper headlines last year, seemingly out of the blue, prompted ministers to set up an independent review led by former King’s Fund chief executive Baroness Julie Neuberger; today that review has recommended that the pathway should be phased out ‘within the next six to 12 months’.
The instinctive reaction of many GPs and other healthcare professionals today has been scepticism. Whatever comes next will be the Liverpool Care Pathway by any other name, it has been suggested. The change will be a cosmetic one to appease the Daily Mail. Others have gone further, suggesting on Twitter for instance that the pathway has been unfairly ‘demonised’ and ‘killed through ignorance’.
This stance echoes the response of much of the medical profession last year, when concerns were first raised. One hospital doctor wrote of the ‘panic spread by hacks and politicians’. A letter signed by 1,300 healthcare professionals argued that media criticism had caused ‘a lot of distress among families of patients and doctors’. Our very own Dr Martin Brunet, whose Pulse blog ‘Beyond the Headlines’ explores the coverage of health stories in the national press, asked whether the row was ‘a storm in the Mail’s teacup’, and concluded that ‘while individual patient stories should never be ignored, neither can they be used as evidence that the Liverpool Care Pathway is fundamentally flawed’.
Such a response from the profession in the face of apparently alarmist news stories about a long-established, evidence-based practice is entirely understandable. But with the benefit of hindsight, it was also misguided, for two key reasons.
Firstly, while the medical profession, hospitals and even Jeremy Hunt were in rare agreement that the LCP represents the gold standard for end-of-life care, it is clear now its implementation in many cases has fallen far short. Horror stories from patients’ relatives in the Daily Mail and elsewhere have perhaps been too easy to dismiss as hyperbole, but Baroness Neuberger’s sensible, measured report today points to real failings.
It found ‘a significant number of relatives and carers do not feel that they were involved in discussions about the care plan, or even offered the chance to be involved.’ A recurrent theme is that of inexperienced, junior clinicians making the decision to put patients on the LCP overnight or at weekends, when senior staff are less likely to be around.
The absence of palliative care services at night and over the weekend is flagged up as a serious issue, as are the incentives paid to hospitals for use of the pathway. There are issues with sedation and pain management – the report found ‘many hospital patients appear to be put on a syringe driver with morphine as the “next step” on the LCP, even if morphine is not the right drug or pain relief is not what is needed.’ And perhaps most shocking is the section on hydration and nutrition, with concerns that ‘risk-averse’ staff are overusing the ‘nil by mouth’ instruction. ‘There can be no clinical justification for denying a drink to a dying patient who wants one, unless doing so would cause them distress’, the report concludes.
(It’s worth noting too that despite the widespread assumption that the LCP represents the gold standard, today’s review raises real questions over its evidence-base, pointing to ‘significant gaps’ in the evidence and finding that ‘formal, independent, prospective testing of the LCP has not yet been carried out after nearly 10 years of its dissemination, which is a major cause for concern.’)
But secondly, and more significantly, the entire episode represents a catastrophic underestimation of the importance of genuine communication and engagement with patients. Even if the entire controversy was a phantom problem whipped up by the national media – and the findings already cited suggest that it was not – in this day and age it can never be enough for doctors to simply blithely insist that a medicine or a technique or a pathway is supported by the evidence, or that it is what they would want for themselves.
As every GP faced with yet another lengthy online printout knows all too well, the rise of the internet and the era of instant, mass communication has contributed to increasingly well-informed patients challenging the medical consensus. And when it comes to dealing with this kind of media storm, any sniff of ‘doctor knows best’ in the response from the profession will ensure that response falls on deaf ears.
Ultimately what comes next for end-of-life care may not look very different from the Liverpool Care Pathway. Those behind the review insist the changes will be substantive, but even if the new ‘end-of-life care plans’ differ largely in how they are presented to patients, the change will have been an important one. As one of the review’s panel put it at the press conference today, the Liverpool Care Pathway is now seen as a ‘toxic brand’ - and whatever healthcare professionals think of it, the pathway is next to useless without the confidence of the patients who are placed on it, and their relatives.
And as for the profession? Well, there are clearly lessons for the NHS in terms of how it listens to patient feedback and responds to media concerns. But Baroness Neuberger’s report also points to wider, systemic issues, which as she herself points out on a number of occasions echo some of the concerns raised in the Mid Staffordshire inquiries.
‘Forget the headlines, look at the evidence’ seems to have been a running theme throughout the Liverpool Care Pathway debate. Today, GPs could do worse than to forget the headlines about the pathway being axed, and instead look in detail at the evidence in the report.
Steve Nowottny is the editor of Pulse. You can follow him on Twitter @stevenowottny.
