The Liverpool Care Pathway, The Dirty Secret of the NHS.

I’ve always made a distinction between my ‘online’ activity,  and my real life, and when I set this blog up I was determined to maintain that partition but I have to accept that all of us are a product of our own personal experience and that the truest things that any of us say are those that have touched us the closest.

Yesterday my mother-in-law died of complications due to pancreatic cancer. She was one of the most formidable, intelligent, incisive, and eloquent people that I have ever met, she could hold her own in any conversation or argument, we both shared an interest in politics and current affairs, and so we hit it off immediately. I can’t say we always agreed, that would be boring, mostly we duelled and I’d hope that she’d concede that honours were generally even.

But this article is not a eulogy to my mother-in-law, nor is it a criticism of the care she received, at the hands of the NHS, since she was diagnosed with pancreatic cancer two years ago. This article is about the manner in which this fine lady was allowed to die, and it’s written in the hope that anyone who reads this who has a close relative with a terminal condition, might become alert when they hear a doctor or a nurse talk of the euphemism that is ‘the Liverpool Care Pathway’.

Under these cicumstances my mother-in-law is just a case study and if I deviate from objectivity then I hope you will forgive me but it will not be my intention to do so.

My mother-in-law, from this point onwards to be refered to as J, was admitted to hospital on the 2nd of this month after becoming extremely sick due to an infection, later diagnosed as gastroenteritus, to be frank her life expectancy at that point was probably only measured in weeks at worst, and months at the very best anyway, and that was understood by J and everyone close to her.

Initially, J was put in an isolation ward and the infection was treated with antibiotics, steadily J improved and she was moved to a public ward but unfortunately due to complications related to J’s terminal condition her liver was no longer processing correctly and J’s condition deteriorated. The day before yesterday, the evening before her death, my wife went to see her again, that evening J was as lucid and eloquent as ever though my wife did comment, on her return, on the yellowing of her complexion.

Up until this point, I make little criticism of the care and treatment at the hands of the NHS, in fact I would commend them, but it is from this point onwards that the care ceased to be appropriate even for a dog, let alone a decent, hard working human being who had always payed her taxes and played by society’s rules.

At 10 am the next morning my wife received a telephone call from a Dr C, a doctor at Southampton General Hospital, requesting that she and her sister attend a meeting at the hospital at mid-day because J’s condition had deteriorated overnight. We all arrived at the ward, prompt, at noon but as no doctor was to be found, we all went to see J.

It is extremely difficult to visit a person you know well and respect, and to recognise that they no longer possess the faculties, the sentience, which define us all as human beings. It is a horror beyonds words, to recognise the frame but not the characteristics of humanity, to see a writhing, restless animal in pain. There is still compassion but dear God, the horror of it.

The three of us, my wife, her sister and myself sat around J waiting for Dr C, I walked away after five minutes, love and duty compelled the others to stay. It won’t come as a surprise to you if I say that both my wife and her sister are very intelligent people, the apple, afterall, doesn’t fall too far from the tree, and while waiting, sitting by their mother’s side, in that time, they realised that the ‘plugs’ or ‘temporary intravenous ingress’, or whatever they are called, which allow the intravenous infusion of drugs and antibiotics, which had been in her left wrist for two weeks were no longer there. I was there long enough to see the look of recognition on their faces. Something had changed and it wasn’t just the deterioration of J’s condition.

Obviously, the stark deterioration in J’s condition in the last 24 hours was uppermost in all of our minds as we met Dr C and a specialist nurse in a side room, in hindsite, would it be so unreasonable to consider that the half an hour delay was a form of emotional/psychological conditioning ? I’ll leave it to you to decide whether we’d been emotionally ‘softened up’ for what was to come.

The very young Dr C talked too much, the specialist nurse kept quiet and smiled convincingly. It was couched as a question, open to J’s daughters to decide, but really under the circumstances, there appeared to me only the confirmation of a decision already made.

I attended as a husband of one of the daughters and I was determined not to intervene in any decision making, though for a long time neither could bring themselves to say the words that Dr C wanted to hear, that didn’t stop me from asking questions. “I’ve heard terrible stories of patients who have not been fed or hydrated”, I ventured. The smiling nurse intervened, “We will treat her in compliance with the Liverpool Care Pathway”. Those last three words were said quickly (evasively ?).

No one can know everything, and I’d not heard of the ‘Liverpool Care Pathway’ before, my wife had heard of it, but she was so emotionally pummelled by that time, that she’d forgotten its context. Little did I know that the ‘Liverpool Care Pathway’ was exactly the kind of programme I’d been worried about, I’d been seduced, in my ignorance, into accepting what I most feared.

Eventually, the two daughters agreed and the verbose Dr C congratulated them on making their difficult but ‘correct’ decision, the nurse smiled.

In hindsite, my wife and I both realise that the decision to withdraw all medication, painkillers,, food, and water, unless explicitly requested by the patient (this is what the ‘Liverpool Care Pathway’ is) had already been taken at a meeting of that DR C mentioned had taken place the evening before, when J was still capable of making the decision herself, and that she had been allowed to deteriorate to that lamentable condition before the family had met her, probably so that they would find the decision ‘easier’ to make.

A palliative nurse talked to us then, reassuring us that J would receive the best palliative care in the time that was left to her. My wife and her sister wanted her to go to the local Macmillan hospice, as she had been registered with them  but they were told that she’d receive the appropriate care at the hospital. “How many palliative nurses are there in the hospital ?” I asked,”Four” came the reply (I found out later that at least half of these were part time). “How can you ensure that she gets the appropriate care if there are only four of you in such a large hospital ?” I countered, There was a hestitation before, “All the nursing staff have had training.” “If they’ve all had training then what’s the point of specialised palliative nurses like yourself ? Palliative care is not only about the dying but also about the bereaved, how can a nurse on a ward with five other patients ensure that ?” I pursued. There was no satisfactory answer but it was clear that J would not be moved.

I went home an hour after that, but the two girls remained by their mother’s side. My wife returned home around six o’clock as she was led to believe that her mothers condition was stable. Around eight she received a phone call to come into the hospital as her mother was getting even worse.

When she and her sister arrived an east asian nurse was behind the ward desk. “Is our mother  here ?”, my wife asked. “Yeh, she still here”. “In the ward?” “Yeh, behind curtain.”

They made their  way to J’s bed and sat down, J appeared to be sleeping. My wife’s sister  commented on how peaceful she looked in comparison to earlier  in the day. They held her hand, waiting for her to wake up. After ten minutes they realised that J, was dead. But they sought the nurses confirmation. “Nurse, is my mother dead ?”, “Yeh, she dead”- “But couldn’t you have told us that she was dead?”- “I tell you, she dead-” “No you didn’t”, ” No, I tell you, she gone.”……………………………………………………………………..”Did my mum die peacefully?”- “Oh no, she vomit blood.”

Needless to say that both sisters are traumatised after the day’s events.

Now, I’m not sure whether or not this falls beneath the standard of NHS palliative care but I’m pretty certain it falls well below most peoples expectation of it. Did J suffer in that final 24 hours ? It is my honest opinion that she most certainly did. She silently writhed on the bed, and when my wife took her hand she brought it quickly to her mouth trying to drink from it. The dehydration caused her mouth to fill with white foam.

As for my own view, this halfway house between continued care and euthanasia, which is the Liverpool Care Pathway, ensures all of the negatives of both alternatives, while delivering none of the benefits of either.

J was not alone, this practice is going on in every NHS hospital across the country every day, in some respects J was lucky, she lasted less than a day, others can survive for alot longer. I suspect the staff have become hardened to the reality and have ceased long ago to ask themselves whether it’s morally right.

If you decided to embark on the ‘Liverpool Care Pathway’ yourself as a form of suicide, you’d be sectioned and forcibly medicated. If you did it to another, you’d be locked up for murder.

If you have a loved one who is terminally ill, then please don’t wait until the end before talking to someone about this, otherwise you’ll not be able to rationally understand what’s going on, and watch that the hospital staff don’t embark on the Liverpool Care Pathway before talking to you first, as they most certainly did in J’s case.

For more information about the procedure of the Liverpool Care Pathway, please follow this link .

Update- Since writing this I’ve discovered that 18 countries have adopted the Liverpool Care Pathway (LPC) procedures, it may be called something different in your country

Latest Update found here.