It was announced in the media, to general applause, that after the Liverpool Care Pathway (LCP) was subjected to almost universal criticism NICE have replaced it with a "patient focused guide".
The LCP was named because it was developed at the Royal Liverpool University Hospital; in the late 1990s it was adopted by many healthcare providers in England to try to ensure that end-of-life care was standardised. Central to the LCP was the idea that medical staff would regularly review the care and treatment being given to terminally ill patients so that futile treatment, or treatment no longer in the patient's best interest, was not continued. By withdrawing care and treatment when it was no longer of therapeutic benefit patients were spared the indignity of often invasive procedures and their negative side effects when many would argue they should be afforded the greatest dignity. The checklist, used to ensure that nothing was omitted when these crucial decisions were made, has meant that it was easy to label the plan as a 'tick box exercise' and, in the rare cases where it was misapplied, rubbish the entire plan.
As a legal academic I understand these moral panics, they're the knee-jerk reactions that inevitably follow bad news - bad things happen and governments fear that doing nothing will be seen as impotent. This is why there were wide-spread calls to 'burn the video nasties' after the horrific murder of Jamie Bulger, despite there being no credible evidence that the killers were inspired by on-screen violence; that the Dangerous Dogs Act, now widely regarded as the worst piece of legislation Parliament has drafted, was rushed through; and why after the school shooting in Dunblane gun control laws were tightened even though the weapons used were possessed illegally. My point is that more rules, or different rules, are rarely the answer. This type of response provides a simple and comforting solution when the understandable need to feel that something is being done needs sating. All too often however there is no simple response, and seeking comfort in reactionary policy, whilst understandable, is not rational.
The government commissioned report that led to the pulling of the LCP did not criticise the plan itself, rather it identified that in some instances it had been used in the wrong way. The LCP did, for example, support making a decision about whether hydration should be given in the last hours of life where doing so could cause harm, or was of no therapeutic benefit. The LCP did not support the bad decision-making that led to reports of patients desperately sucking at sponges to sate their thirst and it certainly didn't justify withdrawing hydration from patients so that they died of dehydration as some sensationalist reports suggested. There were undeniably bad decisions; there will undoubtedly be more in future. However, ditching the LCP is akin to accepting the excuses of the bad workman who always blames his tools and redesigning his tools for him. Odder still would be to accept the bad workman's excuses and rename his tools rather than redesigning them, yet NICE are retaining many of the core principles of the LCP.
There is little to criticise in the new guide - it embodies patient autonomy which has long been recognised as the guiding principle of good medical practice, respects the dignity of the patient, and retains the strengths of the LCP. However, if we are going to afford respect to the dignity of patients at the end of their lives we also need to be discussing how to safely and compassionately provide an assisted death to those who request it.
Thanks to Joanna Cartwright for her assistance in organising my thoughts, it is for her years of experience around assisted dying and her not her genetic proximity that led to me relying on her.
This blog post was first published on the University of Northampton blogsite.