Would you want to be kept alive for months – or years – in a coma? This happened to a member of our family, Polly Kitzinger, after a car crash in 2009.
Polly suffered severe brain injury and was expected to die. But ‘medical heroics’ and repeated life-sustaining treatments ensured that she survived: first in a coma (a vegetative state and then a minimally conscious state), eventually regaining consciousness (two years later), but with profound neurological and physical disabilities. Her memory and ability to understand the world around her is severely limited, she often seems exhausted and in pain, and she is dependent on round-the-clock nursing care. She may well live like this for another 20 years. The whole family agrees that Polly – a fiercely independent and physically active woman – would from the beginning have refused the treatments that were keeping her alive, and would have been appalled by the prospect of her current life.
Can you avoid such a fate? Yes, you can. If Polly had written an Advance Decision (previously known as a ‘living will’) refusing life-sustaining treatment in such a situation, she – and her family – could have avoided what she has been put through over the last five years, and may yet have to endure for many more. An Advance Decision allows you to set out any treatments you want to refuse if you are unable to speak for yourself. (These might include CPR, artificial feeding or hydration or antibiotics.) As long as it is completed correctly (signed and witnessed), an Advance Decision is legally-binding and cannot be overruled by anyone. You cannot, under current UK law, request assistance to die, but you can refuse treatments that are keeping you alive.
As long as you have ‘mental capacity’ – i.e. are able to understand, retain and weigh information – you have the right to refuse medical treatment you do not want, even if your doctors consider your decisions unwise. But if you lose that mental capacity – e.g. because you are in a coma following a car crash, sporting accident (think Michael Schumacher) or medical emergency – you can get your treatment wishes respected only if you have previously made an Advance Decision. Otherwise, treatment decisions are made by your medical team (or in some circumstances by judges) – and not, as many people wrongly believe, by your family or others close to you (although they should be consulted). The principle of ‘sanctity of life’ is key to medical (and legal) decision-making. This means that doctors can – and with advances in medical technology often do – choose to maintain your life well beyond the point where you would have considered it a life worth living.
How to write an Advance Decision
Writing an Advance Decision is relatively simple. You don’t need a solicitor. You don’t even need a special form: you can just write it out, and ensure it’s signed and witnessed. If you want to refuse life-sustaining treatments, you must also include the statement ‘I maintain this request even if my life is at risk.’
Many people find that it is helpful to use one of the Advance Decision templates available on the internet as a way of thinking through the issues. We particularly recommend the one available from our partner charity Compassion in Dying – their website and information line (details below) also offer further information and support. Many GPs are willing to discuss Advance Decisions, and, in any case, you should lodge your Advance Decision with your GP once it is completed, signed and witnessed, so that it is in your medical records. You should also ensure that those close to you have copies (and that you have discussed it with them!). Finally, do regularly review – and, if necessary, update – your Advance Decision, particularly if your medical circumstances change.
A recent survey suggests that although 82% of people in the UK have strong views about their end-of-life treatment, only about 4% have an Advance Decision in place. Why don’t more people write one, particularly as it is so easy to do so? Many people simply have not heard of them – or, if they have, they think such documents are only for those who are old, sick, or nearing the end-of-life. Others say that thinking about death is morbid, ‘tempting fate’, or just too difficult. It is all too easy to prevaricate or procrastinate … Our message is: if you are horrified by what happened to Polly, don’t risk it happening to you and your family.
Writing an Advance Decision is the single most effective thing you can do to ensure that you get to decide on your medical treatment should you lose your mental capacity. Not only does it protect you from unwanted medical procedures and interventions, including possibly-unwanted prolongation of life, it also helps your loved ones to know that your wishes are being honoured. Please do it – today.
For further information:
This piece was written for us by Sue Wilkinson and Celia Kitzinger.
Sue Wilkinson is a Professor in the Department of Social Sciences at Loughborough University
Celia Kitzinger is a Professor at the University of York and Co-Director of the Chronic Disorders of Consciousness Research Centre: www.cdoc.org.uk Email: email@example.com