Read :A Good Death ?

Alex James Shares her thoughts 

A Good Death

 This week Tania and I chatted about a good death. It seems very topical at the moment with news items about death without dignity and families being denied opportunities to discuss endings with their loved ones through lack of information.

 In this blog I’d like to share some of my own experiences of death with you and hopefully provoke some thoughts about good death not only for those you love but for yourself.  In the conversation with Tania I shared with you the story of my brother Simon who, I had had some involvement with towards the end of his life. Simon and I had not grown up together but our relationship rekindled after my father’s death and when Simon was dying of Aids. I talked about my own perception of how I believed a good death would be for Simon – all tucked up in a nice clean hospital bed with a few chosen loved ones by his side. I’m sharing this because I think it’s important that we don’t get a good death and our own interpretations of a good death and our assumptions for others confused. Basically, a good death, I believe, should be as far as is possible pain free and wherever possible in the chosen place of the dying individual. In spite of all of my knowledge and attempts to help him my father died alone in a hospital bed in a confused state. Until his death , I spent every day with him, my son and I lifting him and changing his bedding as there was not enough staff to care for him. In the bed opposite my father a man cried out every few minutes in pain, asking for water and a pee but no one came … they responded with … just coming Mr X or wait a minute we are busy. I’m not blaming them there was only two staff for 16 elderly patients. His food was placed by his bedside, he couldn’t reach it. It was heart breaking to watch and at first I tried to focus only on my father ,but finding it too distressing to do nothing my son and I gave the man small sips of water and in the end I complained that he needed a pee and was wet, which eventually provoked some attention to his needs. My father messed several times and my son and I changed him, bathed him and we managed to get some cream for his sore bottom. It wasn’t dignified for him but better than lying in his own wet urine. We felt helpless, my son and I tried hard to make his last days comfortable as we could. We both felt like we were being a nuisance as we asked staff for clean sheets and bathing equipment –what if we hadn’t been there? It was a blessing that he was confused, he’d have hated to die like that. In the hospice where I worked it was a completely different story, patients tended to with dignity, time given to accompany the lonely, holding their hands, ensuring families got support too. Pain managed as far as was possible and people receiving genuine compassionate care at a time when they were afraid or lonely.  I don’t understand why the way we receive care at the end of life is such a lottery.  The thought of dying alone and in pain drenched in my own urine or excrement and desperate for a sip of water scares me. We must try to instigate changes, for everyone’s sake none of us is immortal.  Why is it that so little attention seems to be given to end of life care in our hospitals? Why are there so few staff?  I think we need to really look at this – like everything it begins with communication. I sincerely hope the press attention will open a forum for discussion  and that if your thoughts about your own wishes for end of life care have been provoked share them – let’s talk !!

Alex

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