We Love Polly

Writing an Advance Decision
Celia Kitzinger  Celia.kitzinger@york.ac.uk
Download a generic form of
Celia's Advance Decision
in .doc Word format here 

When you are ill, you can usually make your own decisions based on discussing treatment options with your health care team. But if you develop a severe mental illness or suffer serious brain damage (e.g. from a car accident or stroke) the medical team will make the decisions for you. Such decisions may take little account of what you would have wanted in the situation.

In 2007 a new Mental Capacity Act came into force. The Act is designed to protect people who ‘lack capacity’ (i.e. are judged unable to make decisions for themselves). It states that any treatment should take into account what an individual might have wanted. The Act also allows anyone to make legally binding 'Advance Decisions'- statements setting out any refusal of treatments in given situations. You do NOT need a lawyer for this.

My sister Polly championed the rights that are enshrined in the Mental Capacity Act. Indeed, she helped others to write Advance Decisions. Ironically, however, she never got around to writing one herself. She suffered very severe brain injuries in a car accident on 30 March 2009 and has been kept alive artificially since then in a coma, vegetative state, minimally conscious state and now conscious with profound multiple neurological and physical disabilities. Because she lacks capacity, she is unable now make her own decisions about treatment. We were shocked to discover that ‘next of kin’ have no automatic legal rights to make decisions about her care: all decisions are the responsibility of the clinical team treating her.

Please consider taking action now to ensure that your health care choices will be respected. You could write an Advance Decision. Alternatively (or in addition) you can appoint someone to represent you by setting up a Lasting Power of Attorney now. Visit the sites below for step-by-step, guides of what to do.

Compassion in Dying: www.compassionindying.org.uk Info about advance decisions; sample advance decision forms

Court of Protection: ‘Making Arrangements for Yourself’ http://www.publicguardian.gov.uk/arrangements/arrangements.htm about appointing someone to represent you

I am attaching a copy of my own Advance Decision. This is almost identical to the one I have signed and placed on my medical records: as you can see, I have removed the names of family members and my GP, my home address and few other personal details. The decisions I have made might offer a useful starting point for thinking about the decisions you might want to make. Note however that these are my own personal decisions and would not be right for everyone - in particular I have refused a broad range of treatments from the moment I lack capacity, some of which you might prefer to accept. Please feel free to get in touch if you have any questions or observations: celia.kitzinger@york.ac.uk

Back To A Call to Action
Back to       
A Call to Action