“Pathway of death drugged and deprived patients of fluids” NOT FOR MY MOM

My contributors are getting faster and faster. I was so heartened by the email which came in this morning. It refers to the recent report by Baroness Neuberger about the Liverpool Care Pathway. The writer, who wishes to remain anonymous, shares her story and invites me to post it.

I am incensed by the withdrawal of the Liverpool Care Pathway and wanted to have a way to share my experience of it. There is no public way and the press have their own agenda so thank you for your blog.
My mom was on Laurel 3 at the Royal and was really poorly. She had suffered for a long time and the doctors and nurses said that she was palliative. They explained to me fully what this meant and hooked me up with a nurse who was part of the palliative care team. I can honestly say that they spent hours with my sister, myself and my mom- not just doing the medical things but also finding out about her and her life.
She was comfortable throughout all of this. Her morphine was given through a machine. She had water from a drip; and the nurses on the wards came and did all the things which I expect nurses to do. I am a retired nurse and in those days we used to call it TLC, making the patient comfortable, pain free and dignified as they met their end.
We noticed that mom was becoming a bit swollen and the nurse explained that she was not able to get rid of the water that was going into her. It was decided with us involved that we should stop the drip. We could still give her fluids on a sponge, which we were encouraged to do, and to make sure her mouth and tongue did not dry out.
Throughout all this, and they were some of the hardest days of my life, we saw the care and compassion of the nurses. Not a death pathway, just a way of treating mom with the dignity and compassion that she deserved at the end of a full life. And ask: “Will patients’ and relatives’ experience of end-of-life care be improved by the withdrawal of the LCP?” For me the jury is out.
I am sad that this pathway is ending. What will replace it? And whatever that report says, I can only give my own experience. Which is truly professional care in the time when we needed it most.

For this lady, the LCP was a tool for making her mother comfortable at the end of her life. I have seen other times, where as part of my job as Chaplain, the LCP has been used to great effect to help with patients coming to the end of their journey. That is not to say that there are not expamples of poor practice, possible because of under-resoucing or inadequate training, clearly there are. Baroness Neuberger is a respected person, and whilst I do not want to demur, I, too, can only post people’s honest opinions about treatment.

I suppose the question remains: “Will patient’s experience be better with the dismantling of the LCP?” For Baroness Neuberger the answer seems to be in the affirmative. For me the jury is out.

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