This is not truly a rant but it is something that has caused me to be concerned. Most of you know that I worked in care looking after mostly terminally ill people. I did a wonderful course at the local hospice that looked at every angle of death, how to help people pass away with dignity, pain-free and as little stress as possible. The course was mentally exhausting because it brought to the surface all our emotions our own fears and the fears we have for others, but it taught us all so much, it made us dig inside ourselves, not always easy to do. I found the hospice to be giving care at a level I had not seen before, amazing standards.
Towards the end of the course we were given our little books which were the handbook of the Liverpool Pathway set out as a basic guide line to achieve a pathway to a gentle trauma free death. When out in the community I then began to become aware of it, and for some families it gave them the comfort they needed to feel they had a plan to make sure their loved one died with dignity in a controlled situation.
This was not true for all families as it seemed some did not understand it and for some families they were not fully aware of their loved ones being on it often their loved ones had been put on it in hospital without the correct level of communication. I found that one case stuck in my mind, it raised the doubt that maybe it did not fully look at each patient as an individual as it should. One evening I was tending a lady who was close to death she had been floating in and out of consciousness, we were told that she was to have no food or fluids just general mouth care to keep her comfortable, she would have choked if she had been given food. As I was washing her she came around and her daughter was at her bedside she held her hand and said I would love a cup of tea, the daughter looked at me with her eyes full of fear, can I give Mum a cup of tea she said. I said, do you want to, she said with tears in her eyes, yes I really do, will she choke? I said I was not sure but I went and made the cup of tea, I came back to find the daughter just cuddling her Mum, she was so very ill, gently we gave her tiny sips of tea, little coughs came after each sip. She drank about a third of a cup, she smiled and closed her eyes she passed away 20 minutes later in her sleep. The daughter hugged and thanked me for making her last wish happen, I knew I could be in big trouble because I did not stick to the care plan but I felt it was the daughters right to be able to make that decision.
Care at all levels must be tailored to the needs of each patient, I now nurse my granddaughter who is very ill, I listen and follow my gut instinct to give the best care I possibly can. The Liverpool pathway I believe was not always interpreted the correct way, everything in life should be flexible and no way should hospitals or Doctors receive payments for putting patients on a pathway. I am glad the reviews came along and changes are coming from it, although my experience in the community was so much better than that of hospital care which is very sad.
Thanks for sharing this beautiful story. We found Mom’s care at home until her death was so dignified and personal. Although she was on the LCP, it didn’t interfere with our interaction with her in her last days and hours. I think you are right, though, about the difference between in-hospital LCP and that experienced by a loved one dying at home xx.
Thank you for the comment Lesley, it is good to know that your Mum had the correct care and a dignified passing. I was also pleased to know that she had been on the Pathway and it had worked the way it was designed too. I know the training the hospice gave us was that the pathway should be a positive aid, and not the horror stories that you do read. I had more positive experiences than bad ones thank goodness. All the people I cared for and still do are always treated as individuals just the way I would want to be. xxxx