Moments after coming off the Care Pathway, my mother was enjoying a G&T and scrambled eggs – and lived for another seven precious weeks
00:05 GMT, 7 December 2012
When my mother was taken off the Liverpool Care Pathway, after more than four days without food or fluids, the first sentence she uttered was this: ‘Institutional scrambled eggs are usually revolting — but these are quite delicious.’
They didn’t sound to me like the words of someone for whom all hope had gone, as I’d been told at the beginning of the week.
This was on Thursday, October 11, this year. The previous Monday, the doctor at the hospice had taken us aside and gently confirmed to us what a nurse had told my sisters the night before.
A doctor can make an educated guess of when their patient will pass, but they can't definitely know – and it is at least arguably wrong for the LCP guidelines to expect them to
Our mother’s illness had entered its terminal phase, she said, and her treatment was being changed. All the evidence showed that her body was now closing down, and, although it was often terribly hard for relatives to accept, she might no longer want or need food or drink.
We were told we could expect her to live for about 33 hours (the nurse had mentioned the same specific figure). But the doctor added that she’d known patients in my mother’s condition survive for as long as a week.
After our talk, a nurse gave my sisters a leaflet headed Relative/Carer Information Leaflet, Liverpool Care Pathway.
So this was it. The end. Except that it wasn’t. As the days toiled by, with my mother drifting in and out of consciousness — sometimes coherent, sometimes totally doo-lally from her illness and the painkillers which were her only treatment — she never asked for food or drink.
As far as I’m aware, no one offered her any either. I’m ashamed to recall that the thought didn’t even occur to me, so firmly was the idea planted in my mind that she was past wanting or needing any earthly sustenance.
But by lunchtime on that Thursday, my younger sister Catherine had other ideas. Our mother still recognised her four children, often smiling at us, and though she no longer spoke, she clearly understood what we were saying.
So, since there was nothing in the LCP guidelines to suggest it was cruel to offer a dying patient liquids, Catherine hesitantly put the obvious question we all should have asked long before: ‘Um, Mummy, would you like some water’
Mum thought for a second, as if she’d been wanting something but wasn’t quite sure what. Then she nodded. After half a glass of water, drunk through a straw, she perked up. So we ordered the scrambled eggs, her power of speech returned — and the next day she was propped up in bed, reading and drinking gin and tonic.
The LCP experts say in their leaflet that some people, at the very end of their lives, neither want nor need water (picture posed by model)
Far from dying after 33 hours or a week, Mum lived on for a month-and-a-half after the LCP was first prescribed, until she was finally gathered to her Maker at one in the morning, a week ago today.
Now, of course, I don’t know what would have happened if my sister hadn’t put that question.
Perhaps my mother would have asked for water unprompted; or maybe someone else would have offered her some.
But since even three of her four children didn’t ask it — we, who loved her so devotedly and for so long — I find it worryingly easy to believe that nobody else would have made the offer either.
After all, aren’t the LCP experts to be trusted when they say in their leaflet that some people, at the very end of their lives, neither want nor need water
All I can say with any certainty is that if, indeed, my mother had been left without, she would have died not last Friday, but some time around the middle of October. The doctor’s prognosis that she had a maximum of a week to live would have been self-fulfilling.
Some may ask: ‘So what’ And I’ll come to that in a moment. But first, I need to make it 100 per cent plain that I have no adverse criticism whatsoever of the doctor who put my mother on the pathway.
She clearly had plenty of training and experience in end-of-life care — and she was far from the first of her profession to underestimate my mother’s resilience.
Unlike so many doctors we’ve read about recently, she did everything exactly by the LCP book, explaining all the implications to the family, while showing kindness that went far beyond her duty.
She was most certainly not trying to hasten Mum’s death. She was genuinely convinced that this would come within a week, with or without treatment, and she was trying only to make it as easy and painless as possible for her.
My only quarrel, as far as it goes, is with the book itself — and, more specifically, with the assumption underpinning the pathway, which is that medical science can accurately tell when a patient has only hours or days to live.
As the son of a woman who had the Last Rites five times over her final five years, when various doctors had judged the end to be imminent, I say this is simply untrue.
A doctor can make an educated guess that his patient will be dead within, say, three days. But he can’t know — and it is at least arguably wrong for the LCP guidelines to expect him to.
With so much doubt about doctors' ability accurately to predict a time of death, can we really be happy that the Government offers NHS trusts financial incentives to put patients on the pathway (picture posed by models)
As for the nursing staff and volunteers at Trinity Hospice in South London, I’ll bless them for as long as I live.
Far from wanting my mother to hurry up and die, they seemed to take pride and pleasure in the way the tough old bird in Room 5 kept going, month after month.
When Mum wasn’t on the LCP, I’d arrive at odd times of the day or night to find a nurse patiently, lovingly attending her and laughing with her, spoon-feeding her wonderful-looking dishes from a kitchen that would do credit to a five-star hotel.
My two sisters also spent hours every day at the hospice looking after her. But they have known and loved her all their lives for the perceptive, funny, brave, selfless, religious woman she always was.
For professional nurses, it takes a special sort of dedication to keep clean, comfortable and free from bedsores a woman they’ve only ever known as a toothless and helpless 85-year-old, bedbound from a broken hip, bright yellow from jaundice, weak from diabetes, sometimes irrational from morphine, and dying from bowel cancer that had spread to her liver and bones.
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‘How are you today’ they would ask her — and on the days when she could speak, she would answer, without fail: ‘I’m very well.’
They showed that dedication in super-abundance — and if I were able to choose where to die, I would pick Trinity Hospice every time, with its spacious rooms, broad and immaculately tended gardens, and delicious scrambled eggs.
Which brings me back to that question: so what if my mother had been left on the LCP and her life had been cut short by a few weeks
I can’t pretend her quality of life was very high during her last 50 days — although she often smiled, seldom complained, read a bit, tried to knit and clearly enjoyed the company of her children, grandchildren and many friends who came to wish her well.
What is certain is that they were hugely expensive — adding enormously to a bill for her stay that must already have run into many tens of thousands of pounds.
Mercifully, Trinity is a charity funded one-third by the NHS and two-thirds by voluntary donations. So my penniless mother and the family didn’t have to worry about that.
But clearly, if all the terminally ill were given the quality of care my mother enjoyed, with three nurses needed twice a day just to turn her over, this country’s hopes of economic recovery would be buried for good.
So it is foolish to pretend that money is irrelevant to the debate about the LCP.
But with so much doubt about doctors’ ability accurately to predict a time of death, can we really be happy that the Government offers NHS trusts financial incentives to put patients on the pathway
Can it be right that 130,000 people die on it each year, including nearly one-third of all those who die in hospital
Or that trusts, which cannot legally be named, go to court (albeit unsuccessfully) to argue their right to deprive patients of treatment
Since so many of us will die on the pathway, isn’t it high time we had a full judicial inquiry into this modern way of death Or are we content to go on telling ourselves that doctors always know best