Throwing the baby out with the Liverpool Care Pathway

This week’s proposal that the Liverpool Care Pathway for the Dying Patient be withdrawn due to variable and sometimes poor implementation is frankly shocking.  See the full report here.

On that logic surely most of the standards and pathways that have ever been invented need to be withdrawn, and the National Institute for Clinical Excellence should immediately shut its doors.

Most NICE guidance is followed variably, if at all.  Yes my dear CEO, honestly – just go and ask your staff.

It still takes an average of 17 years for evidence to be translated into practice (Cooksey, 2006).

I first came across the Liverpool Care Pathway for the Dying Patient when I was doing my compulsory stint as a ‘real manager’ doing hospital on-call duties at nights and weekends.

During the wee small hours I’d be discussing the most pressing issues with the nurse in charge.  Sometimes it was beds, sometimes it was a ‘difficult’ family, occasionally it was a doctor who couldn’t get anything out of the vending machine.

Almost always, talks in the wee hours related to people who were dying.

The saddest situations were those where we all felt let down by the system. People in the last hours of life were admitted into hospital for no good reason.  When the beds were tight we just looked at each other, silently hoping that the poor soul would not linger, for themselves and for the next person languishing on a trolley in A&E and needing active care.

The message from staff was clear: these patients demonstrated inadequate provision at earlier stages of care or during out-of-hours to undertake the difficult process of talking about and planning for death.  If I had a pound for every time I heard ‘the on-call doc doesn’t know them, so they’ve insisted they be admitted’…  No pathway = no DNAR = no preparation for the patient, the relatives or the appropriate supportive services = less compassionate situation for everyone.

The Liverpool Care Pathway for the Dying Patient later found its way back into my world a couple of years later when I led a project to implement it in the local area.

“We tried that, it didn’t work”.  (Another pound please?)

I spent my time visiting, talking to staff and managers, hospice owners, GPs, out of hours services, hospital site facilitators, intensivists etc.  Talk, talk, talk, talk, talk.

Slowly, things changed.  I found if I asked something small enough – like what about trying it out with one patient?  Reluctantly, they would have a go.  It almost never went badly.  If it did, we talked about it, considered why.

“Doctors will never do this you know.  They have no idea how to talk about dying.”  This intrigued me.  Doctors are supposed to understand life and death.  How could they not be prepared to talk about it?

But it seemed to be true.  On reflection, doctors are often doctors because they want to save life, not because they want to ease the journey out of it.  Thank goodness for those who do.

The hospitals introduced training for breaking bad news.  We trained individuals one at a time to understand and follow the pathway.  They tried it out one patient at a time.  It was really, really slow work. 

It’s not just about showing people a new form, it’s about teaching them a whole new skill set.

But people said things like:

• If it wasn’t for this pathway things would get missed.
• We never used to talk about spiritual needs.
• We never used to consider the needs of the bereaved carer – who loses their loved one and various professionals overnight.
• It really helps to have a piece of paper to start the conversation.  I now say ‘it says here I have to ask you about where you’d like to spend your final hours’ or some such thing.

I’ve seen too much care that relies on practitioners to remember ‘perfect’ care – things always get missed.  In fact, the last ten years of my career have been largely based on errors of omission, investigating incidents, agreeing standards or supporting projects that deal with antibiotics that weren’t given, inhalers that weren’t checked, patients that weren’t monitored, surgical kit that wasn’t taken out of the patient etc.

And, let’s not forget.  We like our professionals to be professionals and experts, but many patients and carers are reassured by knowing there’s a structure – they can see you’re not just making this up.  A friend asked me for a copy of the pathway for normal labour.  She was about to give birth for the first time and had no idea what was supposed to happen.

Throwing the pathway out because people don’t use it properly is like shutting all the hospitals in Koegh’s review.  Can you imagine? 

“We’re not saying hospitals are bad in principle, but they’re not always being used properly.”  Seriously?!

“Hospitals should be replaced over the next 6 to 12 months by places where good and compassionate care is provided.”  Do me a favour.

Implementation takes work, time and effort and is something that almost nobody in the NHS is trained to do.  Maintenance of implementation also takes work, time and effort, and few appear to appreciate that either.

I see absolutely no reason to think that implementing the recommended replacement ‘end of life care plan’ will be any easier.