Paul Lamb lost an appeal against a court ruling that a doctor could not help him commit suicide. A review of a different kind of end-of-life care regime recommended the phasing out of the Liverpool Care Pathway. Nikki Kenward warns that disabled people must remain vigilant.
On Saturday 13 July 2013, I woke up to the astounding news that the review of the Liverpool Care Pathway had found that it should be phased out. This hideous, dangerous, indiscriminate, and sometime barbaric tool used to clear us out – the old, the disabled and sometimes those who just got in its way, regardless of age or infirmity – was going. Deaths had been hastened by the premature or over-prescription of strong pain killing drugs or sedatives and worse still, the unnecessary withholding or prohibiting of oral fluids
All the fighting, the efforts to convince people of the mismanagement and downright cruelty and illegality of the regime were being echoed by everyone. Even the British Medical Association declared on Newsnight that it was ‘obscene’ and ‘unacceptable’.
Was the furore real and will it count for much when the dust and the dust of recent graves settle?
How did the furore come about and what was it about the Liverpool Care Pathway that caused so much devastation?
Back in March 2013, the friends and families of the growing number of victims dying from the use of the pathway gathered in Leeds. They gathered with memories of the most awful suffering, loved ones who had cried out for food, for water, and died in so many cases before their time. They had been invited to make their contribution to a review of the pathway. It’s to them that we must bow down in thanks for their courage and determination to end it.
For those of you who don’t know, the Liverpool Care Pathway dates from 2000 when John Ellershaw a consultant in palliative medicine and Deborah Murphy, manager of the palliative care team directorate at a Liverpool hospital, came up with what they saw as a better more effective and certainly cheaper way to transport cancer sufferers to the ‘other side’. All the pathway needed then was a formula to help spread it to everyone and everywhere and some fictions about dying that would soon sound like facts.
Following opposition from doctors, the pathway was given a face-lift in 2009. But sadly it just covered up the wrinkles and underneath was the same evil old goat.
The revised version said that relatives were now to be included and talked to before the treatment was administered. It also said that the loss of interest in and a reduced need for food and drink is part of the normal dying process.
This is a fiction that formed and still forms the very backbone of the regime. If you want someone to die, take away their fluids and the average time of survival is 33 hours. Among those fighting to be heard and who was being ignored was Dr Anthony Cole who chaired the Medical Ethics Alliance. Speaking at a meeting in the House of Lords in January 2013 he said: “In fact no one can survive without hydration and nourishment. They are basic human needs. The human body has a built-in control system to ensure that fluid intake continues.”
Unless a patient arrives with a large part of their body missing, a prognosis of death where the person is hours away from dying, is a misnomer or in the case of the Liverpool Care Pathway, a lie.
Step forward Patrick Pullicino who has been vilified, threatened and ignored, who said: “The crux of the problem is that it is not possible even for an experienced specialist to determine with any accuracy if a person’s medical condition is going to be imminently fatal. Since there is no proven scientific way to predict imminent death, the decision of the Liverpool Care Pathway consensus group is more a consensus on perceived quality of life than on the likelihood of impending death.”
There will be few people reading this who don’t shudder at the phrase ‘quality of life’. Given the odd use of ‘anticipatory prescribing’, a form of what Pullicino described as reverse medicine took place.
So what are we to make of the shock results of the review? We who have fought for change are of course pleased and relieved because the fight is over. Or is it?
Why phase it out? If it’s so bad, just get rid of it. Surely we need the reassurance that it’s really gone and hasn’t left a few infected areas that will flare up again when we’re not looking.
The review strongly suggests that research for the accuracy of prognostic tools for the last weeks to days of life be developed – more tools, more tick boxes.
Is the Mental Capacity Act, used throughout the life of the pathway, still a dangerous tool? The review quotes the Act and despite some rhetoric states that regarding a prognosis that a person is near the end of life, which may as we now know be wrong, that the decision ultimately remains with the clinician.
An amendment to the Act is desperately needed to protect disabled and vulnerable people from the subjective attitude of some doctors towards us.
But how were people employed in a caring profession allowed to get away with this barbaric behaviour for so long? Will anyone be made to answer and pay for what many relatives regarded as murder? The review panel openly admits that it didn’t look at medical records, so we have opinion based on people’s horrific experiences without the facts to look at more closely.
The fight will not be over until we can trust those employed to care for us. In the meantime I’ll still be keeping away from hospitals for as long as I can and I’d advise you to do the same. I’m waiting for their next move, out of the frying pan and into the pyre. I think it will be ‘comfort care’. Look out and run, if you can, when you hear that.