Friday 23 March 2012

Liverpool Care Pathway – A 'Quality Control' Document

Implementation of the LCP protocols require that a diagnosis of 'dying' first be made.

In the following post, blogged on 14 March 2012, no such diagnosis of 'dying' has been made; the decision to implement the LCP protocols is reached solely on an assessment of the patient's condition and perceived quality of life and, as has been confirmed elsewhere in these pages by Dr. Pullicino and others, is - put plainly and simply - euthanasia.

Sad times

My mum had a massive stroke a couple of days ago. The doctors were amazed she survived it, I'm not sure it's a good thing that she has. I feel bad about thinking this, as I know her will to live is very strong, even though she has many serious health issues. However, her quality of life has been poor at best for the past couple of years, she's elderly, frail and this seems to be the final straw. The stroke has left her unable to speak or swallow and paralysed down her right side, although her doctor says she can hear. At the moment she's kept hydrated with a drip and food comes through a tube in her nose and the only other treatment seems to be time. They say the next few days will be crucial.

My fear is that she's afraid and anxious (which she is at the best of times), locked in her body and unable to communicate how she feels. Yesterday she developed a nasty infection, so was given constant oxygen, a course of antibiotics, another drug to bring her heart-rate down, and she was attached to a monitor giving out constant readings. Funny how you stare at a screen even though you have no way of interpreting the data. It doesn't actually tell me the things I really want to know like how she's feeling, is she frightened, can she hear me, will she get better? The only thing I can be relatively sure of are my feelings of inadequacy and powerlessness to help.

The future seems so uncertain right now. Even though like all mothers and daughters we've had our ups and downs, the prospect of life without my mother makes me very sad. There would be no-one to share stories about growing up in the backstreets of Bolton in the 1950s, about life working in the cotton mills, about my beloved grandmother, who died when I was six. When we've seen her recently, one of the best ways of engaging her was to ask about her childhood, life in the war, other members of the family etc. Her longterm memory was still good and we both enjoyed these chats - they were one of the few things lately that could bring the old sparkle back to her eyes.

I keep telling myself it's the natural rhythm of life and everyone's got to die sometime. It's just that since she came to York to be closer to us about five years ago, whenever I've thought of her dying, I always imagined it to be in her bed at home, feeling secure with the people she loves around her. This is no criticism of the staff at the acute stroke unit, who couldn't have been more kind and caring. Yesterday she had Tristan and Rowan two of her three grandchildren at her bedside, plus Rowan's wife, Nicky and Philip and me. Today Felix is coming from Bristol, and it's at times like these when you really appreciate your family - it's enormously comforting for me to know that Lily's surrounded by people who love her.

The doctor told me last night that if there's no visible signs of improvement by this morning then the plan is to implement the Liverpool Care Pathway. As I understand it, this means that all treatment except palliative care will be discontinued. My mother will be cared for, made comfortable but she will not be given oxygen, drugs, drips etc so that hopefully she will be able to have a peaceful and dignified death. I'm told this is not a one-way street and that if she rallies then therapy can be resumed, but sadly at the moment this doesn't seem likely.

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