The lethal medical arrogance behind the Liverpool Care Pathway
Published in: Daily Mail
Step by grudging step – and led by this paper – official Britain has begun to wake up to the scandal of the Liverpool Care Pathway.
The LCP is intended to ease the final hours of patients who are close to death and to spare them the suffering associated with invasive treatment.
Numerous relatives have claimed, however, that their loved ones were put on the Pathway – which involves the withdrawal of food and fluids as well as medical treatment – without their consent.
Far worse, they claimed that some of these patients were not in fact dying when they were put on the Pathway, but were then starved and dehydrated to death as a result.
On Saturday, for example, the Mail told the story of 82-year-old Patricia Greenwood, who was put on the Liverpool Care Pathway by doctors in Blackpool, who removed all her feeding tubes and drips.
But then her family defied orders and gave her water, which sparked the beginning of a remarkable recovery. Now she is planning to go on a world cruise.
The controversy over the LCP was given fresh impetus in the summer when a group of doctors, led by neurologist Professor Patrick Pullicino from the University of Kent, claimed that death on the LCP was a ‘self-fulfilling prophecy’ and a form of backdoor euthanasia, being used to get rid of difficult patients and to free hospital beds.
As such claims mounted, the reaction by the medical establishment was to dismiss them out of hand.
In the past few days, however, the story has suddenly changed. The Association for Palliative Medicine, which had hitherto said there was no problem with the LCP, abruptly turned on a sixpence and said it was launching an inquiry into it.
The next day, the NHS announced it would lead its own investigation into the Pathway by talking to relatives and clinicians, and looking at complaints.
Someone somewhere seems finally to have realised that there is indeed a significant problem here.
Since I first wrote about this just over two weeks ago, the reaction to my article has been an education in itself. For I received two kinds of messages.
The first, from still-distraught relatives, was a steady stream of harrowing accounts of what happened when their loved ones were inappropriately, as they believed, put on to the Pathway.
Of course there are occasions when, through either their own distress or the complexity of the situation, relatives may fail to grasp that their mother or father is indeed close to death, and may therefore genuinely misunderstand that to continue to administer food or treatment in those circumstances would be inhumane.
But most of the accounts I received contained deeply alarming details which simply cannot be brushed aside.
One woman, for example, wrote that her father suffered a severe stroke caused by a blood clot in his brain. ‘All fluids were removed from him and we were told he was in the final phase of his life,’ she wrote.
‘All we were told was that there was no hope for him; it was a matter of time before he died. Eight days later, he opened his eyes and proved everyone wrong by pulling round. Two years on from this he is back at home, although in a wheelchair and with some loss of speech.’
Another woman’s 85-year-old mother was admitted to hospital with an infected gall bladder. The following day doctors told her, to her shock, that her mother was gravely ill and had no chance of survival.
The doctors, who included three consultants, told her that if she did not agree to the Pathway she would be adding to her mother’s distress and misery. She signed the form – only to be horrified subsequently to find her mother highly disorientated, agitated and distressed from lack of fluids and treatment.
‘I compelled the nursing staff to restore hydration and medications, or take full responsibility for the outcome if they failed to. I also took matters into my own hands by feeding her natural yogurt, soft foods and spooning water into her – something which was to continue until she was released three days later, having been restored to full health, cracking jokes and saying goodbye to those who were unfortunately left probably to suffer the same fate.
‘A year has since passed. My mother has a robust appetite and has never succumbed to the “impending doom” I was led to believe she could not escape.’
The stories continue in the same vein.
Another woman’s father was in a nursing home waiting for surgery to amputate his legs following complications from cancer.
The man’s daughter was called by a nurse who told her that her father was on the Pathway, and who then overrode her objections to that decision. Distraught, the daughter wrote to her father’s surgeon begging him to intervene to save her father’s life – which he did.
‘Dad had his amputation and has made a good recovery. I visited him today; he was sitting up asking for sweets. We talked about him coming to us for the Christmas hols. It really could have been a different story. He’s my dad, he is 83 and has a right to choose to live.’
A number of relatives who wrote to me believe their loved ones were killed by the withdrawal of food, fluids and treatment on the Pathway. Their anguish is acute.
‘Whilst trying to have a balanced view on the overall care of my father,’ wrote one woman, ‘the desperate fear and anguish on his face as staff talked about his imminent death in front of him will never be forgotten. I remain devastated that we could not help him. I feel that the LCP is unethical and in my father’s case was illegal.’
If it is hard to believe such systematic abuse could possibly be taking place in our hospitals and care homes, the second kind of message I received furnished all-too-chilling reinforcement.
These were from doctors, nurses and other NHS staff. They did not wish to examine any of the evidence. Facts seemed to be totally irrelevant.
They simply knew for a certainty that all the claims made by relatives – and by Professor Pullicino and his colleagues – were totally untrue, because apparently medical staff like them only ever have their patients’ best interests at heart.
Many were incandescent with rage that I had publicised concerns that patients who were not dying were being starved and dehydrated to death. Several accused me of deliberately sensationalising the issue in order to sell newspapers, and that to that cynical end I had set out to terrify dying patients and their relatives.
One doctor wrote: ‘You are a disgrace. Your attitude towards journalism is deliberately inflammatory, and you peddle misinformation and prejudice even though you should know better.
‘I sincerely hope that when you find yourself lying in an NHS hospital on your deathbed, that the LCP is used to ease your suffering as humanely as possible. Let us hope you aren’t judged for writing this stupid tirade by those who have the misfortune to look after you.’
Someone who described himself as an ‘NHS palliative care worker’ wrote: ‘I believe that a boost in your journalistic profile was behind the article, and the style in which the article was written was intentionally emotive and can have no real aim to discuss or analyse the use of this Pathway.’
Like parrots, these medical staff listed the virtues of the Pathway in treating the dying, and told me that what I had written could not possibly be true.
This was to miss the point by a mile. I had already written that, when someone was truly dying, withdrawing food or treatment was merely long-acknowledged good medical practice. And if that was all the LCP was doing, that was fine.
The concern, however, is that it is often being applied to patients who are not dying – but who then die as a result. To avoid any misunderstanding, I clarified this vital distinction still further in a subsequent piece on the Mail’s website.
But the angry medical staff simply refused to accept that the LCP was ever being used on patients who were not dying, and as a result was killing them. They dismissed all such claims as odious and with no substance at all.
Yet how could they know? The answer was as chilling as it was high-handed: only doctors could tell who was dying.
One doctor wrote: ‘Neither you nor patients’ relatives are trained to recognise dying, and are thus not qualified to comment on the process.’
Another wrote: ‘I am trained in this area and work in this area every day caring for the dying and their families. You are a sensationalist journalist looking for a story to sell your newspapers.’
The arrogance of such doctors was truly monumental. Account after account by aghast relatives was swept aside without a second glance; such witnesses were dismissed as too emotional or too stupid to understand what apparently only the doctors could know.
The most vicious accusation these medics hurled my way was that articles such as mine would so terrify the dying and their relatives that they would view doctors as killers and refuse to accept their medical advice.
I entirely share the concern about the erosion of trust in doctors, and the baleful effects of such suspicion. But if trust has been eroded, it is because so many people believe that elderly patients are being starved and dehydrated to death.
A proper ethical response is surely to investigate such concerns, not use emotional blackmail to suppress them.
And it is no use medical professionals hiding behind the undoubted examples of good practice in care for the dying. The context for these growing claims of abuse is the well-documented and shocking neglect or ill-treatment of so many elderly people in NHS hospitals or care homes.
What my correspondence has illuminated is the compelling evidence of abuse of the LCP – and the all-too-revealing arrogance of the furious NHS staff who deny it all: confirmation of the disturbing attitudes about which the relatives gave such vivid testimony.
It is essential that this thick carapace of professional obfuscation is swept aside if the truth is ever to be established about the Liverpool Care Pathway.