THE MANY DISGUISES OF THE LIVERPOOL CARE PATHWAY
Unfortunately my Father had to go in to hospital recently. The farcical process he and we as a family have had to endure has been very disturbing. It has felt like an attempted murder.
My Father is 77 years old and despite his Parkinson Disease (which he was finding very manageable) is relatively fit and healthy. He got rushed into our main hospital 23 miles away on Christmas morning with terrible pain in his chest, shoulder and arm. He was assessed and dealt with very quickly and efficiently. We found out he had a very badly infected gallstone and he was put on some antibiotics. They said they didn’t want to operate yet because of complications which might happen because of his Parkinson’s, they were hoping it would settle down. So they sent him to our local small Hospital in a town where he and my frail, elderly mother lived together to convalesce and be monitored, this also meant we could visit easier. This is when the nightmare began!!!
By early January, he was in pain and not eating at this point he feels sick because of the amount of acid he was making due to his gallstones. At this point Reapers who work for someone Grim decide to wield their scythe quickly, so quickly you don’t even know its happening. He deteriorated virtually before our eyes. Everyone noticed that his Parkinson’s was now more obvious as he was stressed and agitated. I asked what was going on with him he was loosing weight and he was confused and sleepy, there was a definite lack of communication and conveniently never any one to speak to. He had no drip in to hydrate him, never did have one, and his fluid chart was filled in now and again, also his chart kept saying food refused. I become obsessed with looking at his charts I noticed they’d started giving him morphine. By now he was very poorly. Staff were always either unable or unwilling to give him any time to help him with his drinks let alone food. We felt he wasn’t a priority. Maybe they’d been asked by the doctor not to make him one. There always seemed to be drinks left but not drank by him. I kept asking questions and getting nowhere it was like a closed shop. I asked my Mum “do you think they have him on the Liverpool Care Pathway?” I questioned staff if he was on it and I was assured he wasn’t but what they fail to tell you is just because the paperwork hasn’t been filled in for it that doesn’t mean they are not on an end of life pathway, same thing but without the paper trail. So mum and I set about making sure he had plenty to drink while we were there even when he was sleepy we would take wet tissues to drip in his mouth. We even smuggled all manner of foods in for him just to keep him alive. I stepped up my visiting and I believe we kept him going. He had disappointed them and was still alive, how inconvenient for them.
I always took my Mother to the hospital to visit with me as she has no other means of getting there. I soon noticed that when I popped out of the ward to get a drink or a newspaper they would go and speak to my Mother, it became very obvious that they were almost hiding until I left. When I came back they would disappear again. I’d ask my Mum what they had said to her and got very worrying, upsetting answers. She was told things such as ‘to prepare that he’s dying’ or ‘there’s nothing we can do’ I felt they were convincing my Mum, almost brain washing her when she was vulnerable because I was away from her. I strongly believe they wanted her to make the ‘final decision’.
Towards the middle/end of February I finally found my voice. I was like a dog with a bone I felt the need to protect my Father so strongly I couldn’t believe I had it in me. I rang and spoke directly to his Doctor who said he was dying and nothing else could be done. My argument was he wasn’t dying until the failing health system got their hands on him. Just because he had lost interest in food didn’t mean this was part of a dying process for him. He was unsupported where food was concerned. I told the Doctor we hadn’t been informed he was not being fed or hydrated. My concerns about basic nutrition hadn’t been listened to and his mis-diagnosis of what he alone thought was near death was negligent. He began to spout of about cost and lack of his mental capacity, which was so obviously due to dehydration. This is when I blew my top and the realisation of what was happening became very clear, he had used parts of the pathway to rid society of an old person who was burden on a crumbling NHS. Of course he denied it, saying he only wanted what was best for my Father,I say, “Liar, liar Grim Reaper.” I said to him, “shame on you,” and dismissed him as my dads doctor immediately as his services were no longer required. I can’t believe I had the strength to do that. By now we are now at the end of March and he was still poorly but defiantly nowhere near death.
I knew I was at war with a killing machine driven by an enemy within, called a budget, nurses and doctors are not our friends where our sick and vulnerable friends and relatives are concerned, you must not trust them or believe anything they say. Their sole purpose is to rid society of imperfect life forms and use any part of the Pathway to do so; leaving their precious budget intact. Nurses need to have more authority, they always do what the Doctor has asked of them, even if this is clearly wrong, they ask no questions, they are merely puppets.
We had a long discussion with the hospital, I became more argumentative and more of a pain in their side that wasn’t going away. I told them if you think I’m going to watch my father die of starvation on a NHS ward in their bed you have another thing coming. I want a new Doctor who will regularly assess my father and not have a negative affect on his health. I think I even warned them I was going to the papers with my story if things didn’t improve, anything to bolster up my case.
Thankfully my Father is now improving; only because I had insisted on more time being spent on him by the staff. I would not take no for an answer. He has been fed energy milk, which he was never offered before. After another of my rants to a nurse, I happened to get my hands on, it was agreed my Mum and I could go in to help with feeding actually during meal times, but only because I suggested it, they had not prompted this themselves. He is also on anti-sickness drugs now which are helping and arrangements have been made for him to have an endoscopy so they can finally see what they can do to help his swallowing, again something that had not been offered before. He is sat up in bed these days talking and laughing and is much more alert, more like his old cheerful self. I don’t think he is even aware of the battle I had with the enemy which is probably for best. In the end I did find a better doctor who rings me at home to let me know what’s going on, he says he’s not given up on dad. He seems nice and willing to help (trust on hold) It’s been a long process a lot has been said, lots of water under the bridge, mostly cloudy, but things are getting better.
Please I implore you, if you have any one vulnerable in hospital young or old watch them like a hawk, they can be snuffed out in a blink of an eye. Don’t believe any thing they tell you, question absolutely everything, don’t let them go to their grave and say I wish I could have done more, regret is a terrible thing. Act sooner rather than later like I did. Looking back I am glad I was vile to them,which is out of character for me, I had nothing to loose. I had to take on a different personality to achieve what I wanted, being nice clearly doesn’t get you any where. This is only a brief account of our experience as I could fill a book with more details and facts, but I hope this has been enough to warn you.
“They are the enemy and not my friends. Prepare for war”.
May 2013 – Maz’s Dad was eventually placed into a Nursing Home and despite excellent progress due to good food, plenty to drink and good standards of care he has recently been poorly again necessitating a further stay in hospital. Maz continues to remind staff within the hospital that she is aware of the LCP and is keeping a close eye on all of them. Despite good standards of care whilst at the hospital Maz’s dad died following a stroke.
Jackie Leotardi wrote…
My father, Leslie Smith (pictured left), died on 19th June 2012 at the Basingstoke Hospital on the LCP.
My family would describe the experience as horrific. The LCP’s claim, that “patients are put on the pathway only when all reversible conditions have been appropriately treated” is untrue – in practice there are gross breaches of LCP protocol.
A year previously, my father had been discharged from Basingstoke Hospital in agonizing neck pain, which the Hospital put down to “wear and tear”. Following a private consultation at the Hampshire Clinic and a CT scan it was found that my father was actually suffering from a broken neck – a “hangman’s fracture” and he was re-admitted as an emergency to Basingstoke hospital.
Eventually he was fit enough to be discharged and come and live with us in Old Basing. Although he was severely disabled he enjoyed family life immensely and at the time of his final illness was enjoying the European football championship and helping his granddaughter Lily revise for her A’ levels. He was re-admitted to Basingstoke Hospital on Friday evening 15th June 2012 with a bladder infection.
He appears to have been “parked” by the hospital on a hospital ward with no urgency whatsoever put behind arriving at a full diagnosis and treating him. His condition deteriorated and he became very short of breath, but despite our vehement protestations, the medical team refused point blank to carry out appropriate investigations to properly diagnose his condition, such as an emergency CT scan.
We were told by doctors on the morning of his death, 19th June 2012, that he had an inoperable abdominal perforation and that a move to palliative care on the Liverpool Care Pathway was the only compassionate step to take. When we challenged the diagnosis, on the basis that he had no symptoms of perforation and the Hospital had only done 2 x-rays which were inconclusive, the doctors insisted that it was not in doubt and palliative care on the LCP was the only option.
We now have the LCP document from his medical notes — Basingstoke and North Hampshire NHS FT – LCP generic version 12 – December 2009/BNHFT V12 – signed by his geriatric consultant and a “Junior Sister” (?? surely not qualified to make a clinical diagnosis of viscose perforation?). The LCP document states a diagnosis of just ‘perforation‘. This is sloppy and imprecise. No details are given of which organ is supposedly perforated or which part of the organ is perforated – it is just a poor guess at diagnosis by people who could not be bothered to arrange a proper scan or else were frightened of spending hospital money on a scan for an old, disabled man. It is grossly inadequate.
Three hours after Leslie’s death the geriatric consultant rang us at home to say she had passed his case to the coroner and there would be a post mortem. When I asked why, she was most insensitive and abrupt which was very upsetting and just kept telling me that “it’s all in the hands of the Coroner”. Eventually she admitted to me that the Hospital had contacted the Coroner about my father’s death because they were unable to complete the MCCD (medical certificate of cause of death) as they simply did not have anywhere near enough detail about his condition to meet the standards required by the MCCD. (Ironically, I later discovered that rules for the MCCD were tightened up following the Shipman Inquiry).
At post mortem by the Coroner’s pathologist it was found that diagnosis of perforation was catastrophically incorrect – there was no sign of viscus perforation and my father had died from respiratory failure caused by pulmonary emboli, a treatable condition which – with prompt diagnosis and medication – can be cured.
In reply to my formal complaint to Basingstoke Hospital regarding my father’s treatment, the Chief Executive Mrs. Mary Edwards said:
Your father was reviewed by the on call consultant at 8.00 am on 16 June 2012… The consultant requested surgical review of your father… There is no record of review by the surgical team on (Saturday) 16 or (Sunday) 17 June, and from our notes we are unable to determine whether this was requested… I can only apologise that the planned surgical review suggested in your father’s medical notes on 16 June did not take place. This is not the standard of care we would expect to deliver and I am very sorry that this did not take place. In the absence of the surgical review the possible need for a CT scan was not considered”.
In my opinion, the treatment of my father at Basingstoke Hospital was a typical demonstration of the institutional intolerance, apathy and discrimination towards elderly patients prevalent in NHS hospitals where the LCP is practiced.
I believe there is no place for the LCP in NHS hospital as it is too easily abused and it puts the most vulnerable in our society at great risk. However, if it remains it is ESSENTIAL that the diagnostic documentation is tightened up to the standards of the MCCD with all the safeguards introduced after the Shipman Inquiry.
My father was not seen as a human being by doctors in Basingstoke Hospital, but as just as an old cripple, whose life was not worth the cost of a CT scan. Even if someone is actually terminally ill and can be classed under that vague LCP terminology as “dying” (which my father wasn’t) - that dying person is still entitled to the full protection of the Law as they approach their natural death.
OTHER STORIES ABOUT PEOPLE; NOT REFERED TO IN TEXT BUT OF INTEREST.
“Elderly wife ‘left to die’ after hospital put her on end-of-life programme.” Read more »
“Pensioner placed on Liverpool Care Pathway without family’s permission dies after spending eight days without food or water.” Read more »
“The put my mum on death pathway but didn’t tell me, says Toyah: Singer tells how she found out when overhearing a hospice nurse.” Read more »
“Police probe the death of mother on ‘care pathway’: Son claims ‘cruel’ withdrawal of fluids and food was ‘attempted murder’.” Read more »