The importance of our My Life, My Decision project was brought into sharp focus on the 2nd January when research from Compassion in Dying featured on BBC Radio 4. You can listen here until 30th January: http://www.bbc.co.uk/programmes/b04vqxyz
Early in 2015, the PM programme opened with the Compassion in Dying research that despite 80% of us wishing to stop life sustaining treatment if we lost capacity to make our own decisions (from something like a head injury or dementia), only 4% of us have actually taken steps to ensure this wish would be respected.
Many of us operate under the mistaken assumption that if and when something happens to us, our next of kin will be able to make choices about the treatment we receive on our behalf. However, although our loved ones’ views will be taken into account, the medical team caring for us are under no obligation to follow what they say. As our My Life, My Decision project emphasises, if you have strong wishes you should use your legal right under the Mental Capacity Act to record these in a legally binding way Advance Decision.
The programme heard from Celia Kitzinger, a supporter of Compassion in Dying who has personal experience of what can happen if you do not record your wishes. Celia told listeners the tragic story of her sister Polly, who as a young woman was left seriously brain damaged after a car accident. For weeks after the accident, Polly was in a deep coma and the doctors said she was likely to remain in a vegetative or minimally conscious state for the rest of her life. At this point, Celia says she and her family knew, from Polly’s character and previous things she had said, that Polly would want to die than remain in this state. However, since next of kin cannot make decisions about treatment, Polly has been sustained in this way since 2009. Sadly, Celia told the programme, this goes against everything Polly stood for; she did not believe in prolonging life at all costs and had mentioned in past conversations that she would want to refuse treatments keeping her alive if in such a condition. However, without recording her wishes these anecdotes mean little and Polly is kept alive.
Celia regretfully recounted the situation as it is now, with her sister rarely able to recognise her family and pleasure being occasionally enjoying the taste of chocolate, and questioned if this is the kind of life Polly would want to lead. Her story illustrates why it is important for everyone (young, old, ill or not) to record their wishes in advance.
We strongly agree with Celia, and My Life, My Decision can help YOU record your wishes if you have not yet done so. Just click the ‘Services Near Me’ tab at the top of the page, or call Compassion in Dying’s Information Line on 0800 999 2434 (free from landlines and open office hours Mon-Fri).