Liverpool Care Pathway. The Liverpool Care Pathway is highly criticized by shitty news papers such as the Daily Mail who have no clue what they are talking about and yet still feel they have a right to send wrong and dangerous information in to the world that is untrue and misrepresents the fact. The Jobbing Doctor describes quite accurately how I feel about the Daily Rag and their 'journalism' in relation to the Liverpool Care Pathway: "The Daily Mail, in its own unique way, is a bilious hate-filled rag full of sensationalism and bias. Similar to the Sun, but for those with GCSEs, with slightly fewer pictures." But I digress.
The Liverpool Care pathway is a protocol that helps medical staff when patients are actively dying. It provides space for all active treatment to be revoked and focus ONLY of patient comfort and symptom control. This may (notice: MAY) include withdrawing artificial hydration. it does NOT say people should not be given drinks if they can still swallow. Nor does it say people should be dehydrated to death.
The main problem is not the Liverpool Care Pathway itself but the implementation of it. So communication is vital. But also, people are not supposed to be on the Liverpool Care pathway for weeks. So normally you will not be on it for weeks. But mostly just for days or even hours sometimes. It is for people who are ACTIVELY dying. Not just terminally ill. But when the body is physically shutting up shop. So if you don't give someone food and drink for days or weeks, it is not a good thing. But if they only have hours or a couple of days left, then it is not their main cause of death. It should be reviewed every few hours......
We could argue Jane was on it too long. She took about 12 days to die once in the hospice. By the time she went in to the hospice, she already was dehydrated for about 5 days due to no longer being able to swallow. So yes, Jane died of dehydration whilst on the Liverpool Care Pathway. In her case, the Liverpool Care Pathway hastened her death. And maybe she could have been given IV fluids. Maybe the Liverpool Care Pathway was not applied appropriately in her case. Because the fact that she took so long to die proves her body was not yet actively dying from the brain tumour. So the lack of fluids killed her. In a way, you could say she died because of the Liverpool Care Pathway. Which was wrong. I did not know this at the time and I had the impression Jane was pain-free.
But this may sound callous and harsh, she was going to die soon. I could have prolonged her life for weeks by giving her fluids and food through a tube. She would have slipped in to a coma eventually. But that might not have been for weeks. Or months. And she might have been able to communicate with me during that time. But most likely she would not have been able to make much sense of the world, hydrated or not. So we would have had a few more weeks but there is no way to measure what kind of quality of life that would have been for a young woman, fully incontinent, bed-bound, unable to understand the world around here or hold conversations of any kind.
I still think about it. Did I do the right thing? Probably not. I should probably have fought harder for getting her hydration sooner. The thing that is upsetting me more and more is the idea that I did not talk to Jane about it enough. I very quickly assumed the role of carer and probably very soon took over the decision making. I perhaps took away her right to decide too soon and did not put enough effort in trying to find out if she was still able to have thoughts about it.
But it was the way it was. She lasted longer than the doctors anticipated once she came to the hospice. And the problem with dehydration is that you can not, after a week of absolutely no fluids, suddenly decide to give loads of fluids again and say: oh, maybe this patient is not actually dying just yet, let's re-commence fluids. By then, someone may already be in organ failure so you are kind of on a path of no return.
No point in revisiting things. It wasn't as if she died unnecessarily from a curable disease. I think the best I can say is that she died earlier than she should have due to implementation of the Liverpool Care Pathway. However, the Pathway protocol itself ensured that her death was painless.
But then again, that is what thought then, and still think now, when I knew nothing about these things. The more I learn at university, the more angry I get. I did not know better. But doctors back then did, and did they do the right thing? Did I ask them enough questions?
I am afraid that learning more at university will make me re-visit and re-think the whole thing. And I am so scared that because of knowing more, I will have some belated trauma about Jane's death. I don't want that. I have accepted it and, mostly the way it went. If gaining knowledge about it means I am going to doubt every decision that was made back then, I prefer to remain ignorant.
PS: For those who are really interested in what the LCP *really* says, you can read the entire LCP document guidelines here. You will see that there is nothing wrong with the pathway itself and that the problems are its implementation.
Painting by numbers
6 days ago