I think there is a misunderstanding about what palliative care means for patients, for families, for professionals and for the society in general. There is still a lot of people who think it is only for end-of-life care for the last few days or weeks of life and I hope that we’re trying to get over that and say it’s important earlier on in the disease process, preparing people earlier on for their symptoms, their anxieties, their issues within their family network...
I think there is a misunderstanding about what palliative care means for patients, for families, for professionals and for the society in general. There is still a lot of people who think it is only for end-of-life care for the last few days or weeks of life and I hope that we’re trying to get over that and say it’s important earlier on in the disease process, preparing people earlier on for their symptoms, their anxieties, their issues within their family network. So I think that’s the most important thing that we need to move on with trying to explain to people what palliative care can offer. And I think if we start providing that information that it can improve quality of life, it may even improve length of life but it will help the person and their family do the things they want to. For instance I always remember one lady who had MND was in a wheelchair with a feeding tube and a communication aid and it would be very easy for her to say my life’s not worth living. She went on a holiday with her daughter and they went into the nightclub and she found with her communication aid she was able to communicate much more easily than anybody else in the noisy nightclub. She found that a gin and tonic went down a feeding tube very well and if she felt sleepy or wobbly it didn’t matter she was in a wheelchair and she could join in on the dancing on the dance floor in the wheelchair but the only problem was everybody else wanted to have a go at pushing as well. So I think that’s she could see that she could still do things And often with progressive diseases people see the things they can’t do and we need to encourage people to see the things they can still do. It may not be the things they want to do or they’ve done in the past but can they see the things they can do to improve their quality of life. And I think palliative care services have shown now in studies that we can improve quality of life reducing symptoms and improve how people are so that they can get on and do the things they want to.
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