In December, NICE released their long-anticipated guidelines for the care of patients in the last days of life. When you read it, you could be forgiven if you fail to spot how it differs from the now much maligned Liverpool Care Pathway. As far as I understand, the main objections were that the Liverpool Care Pathway was incorrectly implemented (mostly in secondary care) and the word ‘pathway’.
The new NICE guidelines have magically erased the word ‘pathway’. Good job! Next, there is a lot of careful language in the revised guideline – to assess and reassess the patient, to try non-pharmacological treatments first, and make sure you communicate with the patient and their family. It’s just a pity that so did the previous Liverpool Care Pathway guideline. I can’t help but feel that end of life care pathways are a bit like inventing (or reinventing) the wheel: they’ll only work if someone puts the effort to turn the axle. What was needed was a culture change (dare I say in secondary care?), not a new guideline.
We must avoid a tickbox menu of potential places of care
I am passionate about delivering good quality palliative care. However, there is one aspect which I fear we’re still not getting right – the preferred place of care. The new NICE guidelines still have the line under ‘providing personalised care’ saying that their individualised care plan should include ‘preferred care setting’. Community and hospital teams use the traditional four options: home, hospital, hospice or nursing home.
The problem we face is that all of these are loaded with stereotyped lack of understanding by your average patient. How many times do we hear patients tell their family, ‘as long as you don’t put me in a home.’ It takes time and effort to dig underneath such comments, and if the conversation is rushed it can either simply reinforce the patient’s preconceptions or convince the patient that they have a true ‘choice’ which is guaranteed.
The simple truth for your average patient who is approaching the end of their life with well controlled symptoms is that they have a choice between their own home or a nursing home. I would love to see the look on a hospital bed manager’s face if I rang them asking for a bed for a dying patient. Similarly, it’s unfair to block a bed in a hospice for a patient with perfectly well controlled symptoms when someone else is in severe pain or distress.
Increasingly, I’m coming to view ‘preferred place of care’ in the same light as a birth plan. I have started using that metaphor with patients and they seem to respond well to it. They like the fact that they don’t need to make a final decision on the spot. They like that we can review the decision as further information comes to light. It allows me to say that if their symptoms become poorly controlled we’ll ask the hospice if they have a bed. It also has a side effect of normalising death, just as birth plans seek to normalise childbirth. Just as we need to avoid a tickbox culture of sedation and analgesia for the dying patient, we must avoid a tickbox menu of potential places of care.
Dr Phil Williams is a First5 GP in Lincoln, and former RCGP National Lead for the First5 initiative