The great final leveller – Making end of life care fairer

Being there for someone in the last few days of their life is just about the toughest thing you can do. At the same time as you are focused completely on them, you are struggling with your own terrible feelings of distress and grief. And then, when it’s finally over, you discover it’s not over at all. As a carer or family member you have to find a way to carry on when your world has been blown apart. I know because I’ve been there when my mum died 13 years ago.

There is so much that the NHS and others can do to make this, which will always be a terrible time, as least awful as possible but too often families and carers are left to struggle. If you can call me lucky, (and to be fair I don’t feel all that lucky), the doctors and nurses that supported me and my family were fantastic and made something so awful much more bearable.

Last year, an independent review of palliative care was carried out, looking at the way people with life-limiting or life threatening conditions, and their families and carers are supported. Our system is a mish-mash. Some services are funded by the NHS, some by charities,  and some paid for by individuals and families themselves. Many people don’t get the service that would be best for them if they had the opportunity to choose from all the options.

If a local hospice is the place that you and your family feel is right, that’s where you should be able to spend that precious time. If you think hospital or a care home is the best place, again that’s what should happen. If being at home is right for you and your family, then that should be made to work with the right kind of help.  There is a push to ensure more people die at home than in hospital – generally what people want – but often not enough support for families. Without the right kind of support, carers and families often can’t cope. The person ends up being readmitted to hospital as an emergency, and sometimes never comes home again. Not what anyone wanted.

If you and your family do decide being at home is the right place, then effective support needs to be available 24-7. How many times are we told help will be on hand only to discover that the office is only staffed 9 to 5? If it’s 2am, how are you supposed to manage until the morning? Crises don’t just happen in office hours.

Yesterday, the Government and Marie Cure Cancer Care announced funding for pilot sites to explore what better support for people at the end of life would look like and how this can be made to work. Although it’s easier not to think about it, this is one thing we’re all going to have to confront eventually. We need to make sure that when we’re facing this one great final leveller, there is the equity of support to make it no worse than it has to be – for the person themselves,  of course, but also for their families and carers.




We are supporters of the Dying Matters Coalition. More information is here


March 21, 2012 - Posted by | Relationships | , ,

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