This is an article that I’ve recently written for the Pilgrims Hospice magazine…
UNDERSTANDING THE LIVERPOOL CARE PATHWAY
When my husband died at Pilgrims Hospice Canterbury in January this year I knew nothing of the Liverpool Care Pathway (LCP). Ben and I had been cared for wonderfully by the hospice during the week leading up to his death – after having looked after Ben at home for many months, it was a relief to be in the hands of caring and experienced professionals, and I walked away from the hospice feeling eternally grateful for how the team there had carried us through those difficult days.
Since then, our time at the hospice has never been far from my mind, and so when end of life care started to come up in the news with a furore over something called the Liverpool Care Pathway, I took an interest and decided to find out more.
What is the Liverpool Care Pathway?
The Pathway is a set of guidelines, designed to ensure the maximum dignity and comfort possible for a dying person. It was formulated in the 1990s by the University of Liverpool in conjunction with Marie Curie, as a way of rolling out the kind of best practice already used in many hospices to all medical institutions. It encourages doctors and nurses to regularly review all aspects of a dying patient’s care and make adjustments as and when necessary to make them as comfortable as possible. This would include, for example, checking that all medications or tests are actually still helpful to the patient and dropping any that aren’t. New drugs to reduce pain and discomfort may be introduced. If, in the last few days or hours the patient is no longer interested in, and no longer needs food or drink, these would be stopped. Conversely the LCP’s process of constant review could lead medical staff to decide that the patient has taken a turn for the better and should come off the Pathway.
Described like this, it is hard to understand why there has been such an outcry against the LCP. Unfortunately it seems to have been applied and communicated very poorly in some hospitals (not hospices, significantly), leading to complaints, scandal in the media and a government-commissioned report recommending that it be scrapped.
Was Ben on the LCP?
With all this fuss and debate about the Pathway going on, I wondered whether Ben had been put on it. Certainly his end of life care resembled what I had read about the Pathway (for example, his drugs were pared down to the essentials, nobody was pushing him to eat and drink when he was no longer willing or able to). However, nobody had spoken to us about it, and since communication with relatives is a cornerstone of the LCP, I was unsure. As has always been the way, the counselling and medical teams at Canterbury Hospice were very happy to talk to me and answer my questions.
I discovered that Ben had not in fact been on the Pathway, in fact only roughly 60-70% of people at the hospice are. ‘Why?’ I wondered. In Ben’s case it was because his decline had been very rapid – when he had gone into the hospice at the beginning of the week we had hoped he would be staying only for a week’s respite, but after a few days his condition deteriorated quickly, so quickly that it would have been inappropriate for the medical staff to start talking us through the Pathway as Ben’s final hours were already upon us.
I asked what would have been different if Ben had been on the Pathway, and the answer was ‘nothing’, well not in terms of Ben’s care – LCP practice and normal hospice practice are basically the same (remember that the LCP was based on what hospices were already doing!). The only difference would have been the medical staff using the LCP as an extra tool to guide and prompt them, and there would have been more time spent talking with us the family about the decisions being made about Ben’s care. As it was, there wasn’t time for this.
Compassionate common sense
I can understand that many people might be worried about how they or their loved ones will be treated in their last few days of life, having heard the storm of criticism in the media lately. However, I can say that in my experience – whether the LCP is used or not (as I have discovered, it makes little difference in a hospice setting) – the care at Pilgrims is what I would call ‘compassionate common sense’. That’s basically what hospices are so good at, and what through the introduction of the LCP it was hoped hospitals might also be able to do – what a shame that it has backfired so badly. Fortunately, at Pilgrims, while the LCP itself will be put aside for now, the excellent practice on which it was based shall continue to go on.