I wanted to update this post and condense it down a bit as it was all so raw when I wrote it but it’ll have to wait for another day as I’m finding it difficult to just read through it, let alone re-write it. I’ll always miss Larry and two years on I still miss him every bit as much as when I wrote this. I know I was blessed to have had a brother like him and I am starting to remember more of the happier times we spent together and smile about them. That doesn’t mean that I will ever consider the way he died okay. But it is a start x
“As soon as you’re ill, they kill you!”
– Derek and Clive (Peter Cook & Dudley Moore)
“How people die remains in the memory of those who live on”
-Dame Cicely Saunders
Here we are in March 2011 and it’s almost spring, there are signs of life waiting to burst forth from the trees and flowers and it can’t come soon enough for me. It’s been a rough, long and cold winter, with more snow in London again this year. I’m not a great fan of snow myself, nor freezing temperatures, mostly because I find it impossible to keep my hands and feet warm, no matter what I wear. For many reasons I am looking forward to spring and summer in the hopes that they will finally melt the ice that has taken up refuge in my heart. If the cold weather wasn’t enough to chill me to the bones, November also brought the untimely death of my wonderful and very well loved brother Larry. It was not a quick, nor painless death and three times I witnessed him in a state of mortal terror at his unfolding fate, crying (for the first time in his life) but without being able to make any tears. Although Larry had a cycling accident in France at the end of June 2010 there were a series of fortunate incidents that helped him to cling to life. The turning point came when he was brought to the UK and had to endure a series of calamities that no one should have to go through, least of all someone in such a delicate state.
Larry’s death was hastened when he was put on ‘The Liverpool Care Pathway’, something I had never even heard of before I witnessed it in action first hand. When researching it I found out that it was created to assist elderly terminally ill cancer patients to die, preventing their continued suffering when there was no hope whatsoever of recovery. It sounded a lot like euthanasia to me, although I thought that was illegal in this country, as I had heard of cases where terminally ill people wanted to go to other European countries to end their lives but were often prevented from doing so. Now in the UK, the LCP is being rolled out in a lot more situations and settings with a ‘tick box system’, so that just about anyone who presents a challenge to their medical team can now be placed on it.
Larry and Roland Lucas on a diving holiday in Gozo.
I read with interest that there were many eminent professionals in palliative care (Professor Peter Millard, Emeritus Professor of Geriatrics, University of London, Dr Peter Hargreaves, a consultant in Palliative Medicine at St Luke’s cancer centre in Guildford, and four other people) who have objected to the way this scheme is operated and their concerns about it, stating that ‘forecasting death is an inexact science’. They wrote an open letter to the Daily Telegraph in 2009 to express their concerns publicly (http://www.telegraph.co.uk/comment/letters/6133157/Dying-patients.html). I would like to thank each and every one of them for speaking out and I hope that the scheme will be looked at more closely at some point as a result.
In Larry’s case, he was not ‘terminally ill’ at all in the accepted sense, nor did he have cancer. I have read a great deal now about The Liverpool Care Pathway and how it is claimed to be so ‘humane’ for those with terminal illness, yet it was used in the case of my brother and in my humble opinion was anything but humane. I will always believe that he should never have been placed on the scheme at all. I watched him being dehydrated and starved to death, unable to do anything to stop the nightmare from unfolding before my eyes. It was like watching a murder or a sacrifice, committed by unthinking and unfeeling aliens. He suffered a great deal, not just due to the stress, hopelessness, ignorance and poor care but also because people so often forgot that just because a person can’t talk that their ears work perfectly well, the hospital chaplain being one case in point who was having a charming conversation about sandwiches when I arrived in his room the day before he died. I don’t know about you but talking about food at the bedside of a starving and dehydrated man does not seem to me to be showing compassion. I didn’t bother to take her to task and waste what would be the last visit with my brother but was glad when she scurried out of the room. Suffice it to say that Larry’s was not an easy, nor a timely death. I believe with all my heart that he should and would still be here if he had either remained in France or received the proper care. He couldn’t even complain about his treatment because he developed hydrocephalus and couldn’t speak, although there was no explanation forthcoming about how that happened, or why it wasn’t picked up on sooner. We have our suspicions but of course no one will now ever listen to them. Brain injuries, like strokes, can take a long time to recover from but this seems to have escaped everyone concerned in Larry’s care. He did not heal according their schedule, how unreasonable of him?
The first grave error was his removal from the state-of-the-art French hospital he was in after the accident when only four weeks had passed, almost two of which he spent in coma. I was surprised they allowed his release at all but don’t know any of the details. He was flown back to the UK with six broken ribs and a broken collarbone, and after having had brain surgery and a tracheotomy and before the bone flap had been replaced, so had no protection for the injury site of his brain. It takes up the three months for the injury site to repair itself and the flap is only replaced after the healing is well underway and all chance of complications or the need for further surgery is over. Despite all this he was not taken straight to another brain injury unit on arrival in the UK. London has a very good brain injuries unit, perhaps several, but instead he ended up in some backwater in a general hospital, where they seemed to have no clue how to treat him. He also contracted MRSA the day he arrived there. I noticed on their website that they claimed NO cases of MRSA.
It’s all too late for Larry; we can’t bring him back of course. Some people console themselves with the fact that they believed that he was a mere vegetable, rather than seeing any signs of the fit and healthy person they used to know before. Perhaps they thought that life in his condition was no life at all and were agreeable to the ending of his life, of course I can’t speak for anyone else. I knew that Larry wasn’t a vegetable, I spoke to him at great length, asking a great deal of questions and asking for a ‘yes/no’ response with the movement of a hand or a foot, once for ‘yes’ and twice for ‘no’, repeating the questions several times to make sure the answers were consistent. This was also done by and witnessed by another brother, who was also communicating well with him. Between us we asked him if he knew what had happened to him – he didn’t remember much about the accident itself. We asked if he knew where he was – he knew he was in a hospital. We asked if he knew why he was there and what had happened, and I also explained that the reason why some of his limbs didn’t work, as they should, was because of the injury and resulting surgery to his brain, rather than a physical disability – he hadn’t known this. Most importantly, we asked him if he wanted to live, even if it meant that he’d never walk again and he gave a definite ‘yes’ on both counts, again and again, that to be alive was what he wanted, in fact he got very animated when asked this question as if he believed we could do something about his fate. He wanted to fight his illness and was raring to give it his all. I also observed that since his accident, Larry had never looked so much like his old self as he did after they stopped giving him the antibiotics. He perked up no end and was much more alert, responding to the music and sound files that my brother played to him.
We tried to let the doctors know that he had made improvement, but it fell on deaf ears. They treated us as an irritation at best and like troublemakers at worst for having the audacity to question their decisions. We had known Larry for a lifetime, he was someone we loved and believed in, and we were familiar with his (and our) upbringing and mental agility, as well as his fighting spirit. We pleaded with them for two weeks’ grace, for Larry to have a chance to show improvement and fight the aspirational pneumonia that had failed to respond to the ultra broad-spectrum antibiotics, the drugs they had described as ‘the big guns’, which we believed actually made him worse. They refused to remove him from the LCP and his care, which was already poor, nose-dived. They stopped washing him, hid his catheter under the bedclothes, and folded the bag up double for some inexplicable reason. They also withdrew all drugs and set up a morphine pump, although we noticed there were never any of the sponges in the room that they said we could wet his lips with, in fact they only turned up when he was on deep sedation. It was also cruel that he had witnessed the death of his father in law in his own home on the same scheme that was now robbing him of his life – and he knew exactly what was happening to him. The old gent however did have terminal cancer and was suffering. Larry was thought to be ‘suffering’ even when he cleared his throat or had wind, no one was taking any notice of what was really going on with him, and those of us that did were ignored. Larry only began to suffer when he was dehydrated and starved to death and had he actually been ‘terminally ill’ as they said, then surely he would have died anyway, without the dehydration and the horrible scenes that burned themselves onto our memories and split our family in two forever.
It seems there was no justice for Larry, but I have always believed in karma, that what goes around comes around, so there is no hatred from me to anyone involved in Larry’s death, I don’t deal in hate. All I ask is that they remember his name and what they put him through, how they made him suffer in the name of ‘not suffering’. I hope that they one day fully understand what it is that they have done on a mere whim. Interestingly the inquest into Larry’s death was also rushed forward and took place two days before Christmas. Many of us who wanted to, couldn’t attend – with the snow preventing travel for my relatives who don’t live in London, others being very busy at work at that time of year. I couldn’t go because I spent six weeks in bed with severe and painful sciatica, unable to walk, and couldn’t even manage to get a doctor to return my calls during that time, how I love the NHS. Christmas didn’t happen at all in 2010 for us, we had no heart for celebration anyhow. Two of my brothers did manage to attend the inquest, and it confirmed a few things we suspected about Larry’s treatment.
The most interesting thing to happen since was that his death certificate didn’t mention ‘The Liverpool Care Pathway’ at all (although it was mentioned in the inquest), instead it was all wrapped up neatly citing that his death was the result of ‘intra-cranial haemorrhage and bronchial pneumonia, the result of the accident in France’ – the only thing is that Larry had ASPIRATIONAL pneumonia, due to the constant reflux of his liquid food, time and again we told the nurses that he was supposed to be elevated when fed and time after time they had him lying flat. I never once heard the word ‘bronchial’ mentioned during his entire time in hospital. While researching aspirational pneumonia I noted that there is apparently no proof that aspirational pneumonia responds to antibiotics AT ALL. I also read up about the ultra-broad spectrum antibiotic they used on him and was horrified to discover that it was capable of causing atrophy to all the muscles of the spine, leaving me to wonder if they did a wonderful clean up job to sweep it all under the carpet? Although I am not a medical person and cannot claim to have all the answers, I did know my brother well enough. I would imagine that the intra-cranial haemorrhage would seem most likely to have been the result of both the dehydration and the withdrawal of the blood-thinner warfarin that was previously preventing his blood from clotting while he was bedridden. To top it all off when my sister asked for a transcript of the inquest she was told she couldn’t have one, even though the government website clearly states that ‘any interested party can obtain a copy of the inquest information for the cost of an administration fee’, my sister is both an ‘interested party’ and was quite happy to pay the administration fee, so it seems quite odd to me that she was refused information about her own brother’s inquest, which had they not rushed it forward by a couple of months, she would have been there in person, we all would.
The saga of Larry’s death has caused wounds so deep, in so many people that they will possibly never heal completely. The one thing that we can all agree on is what a wonderful, kind human being he was. Our love runs deep and everyone who knew Larry well is going to continue to miss having him in their lives, those who might find it easy to go on without him probably never really knew him to start with. Despite our feelings about what has happened and the relationships that may have broken down as a result, Larry was a man of good humour, truth and honour, a more well-balanced and non-judgmental man I’ve never met, and he deserved so much more respect than he ever got, and someone needed to say that.
So that’s why I’ve been quiet.
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