After Paul was knocked down I felt I had to make some positive out of a terrible situation to help other people and it’s what anyone who has spent their entire working lives serving the public, like Paul and I, would do.
Family, friends and acquaintances would comment on how if it were them in Paul’s state, they would want family to let them go and many of these people had already had the conversation with their loved ones. It became apparent then that people didn’t realise how powerless we are to enact on others’ beliefs and wishes, unless the affected person holds a legally binding Advance Decision or Lasting Power of Attorney.
I have done a dozen newspaper, magazine and TV interviews to raise awareness of Advance Decisions. Paul’s case has also been on the front page of newspapers, TV news, radio and talk shows and is used in legal and medical training courses, lectures and academic literature in Court of Protection matters, Disorders of Consciousness, Advance Decisions, Deprivation of Liberty and the Mental Capacity Act. Soon after I told our story, the helpline for Compassion in Dying had a record response and an increase of 40% more calls from people wanting help in planning for and writing Advance Decisions (Living Wills) and every time I do a new interview, the enquiries to Compassion in Dying peak. When I started the Advance Decisions campaign, independently by using a London press agency (Amy Sharpe who now is a journalist with The Mirror) in July 2016 I was just speaking the truth as there was nothing else I could do. I had no idea that we would change case law and help reshape medical practise, thanks to Paul and as he was an unforgettable person I know he would be happy that he has helped to do this and have a positive impact.
Paul, like most people in the UK, did not have an Advance Decision. It would be good if everyone made decisions now that would be legally binding should there come a time in the future when they are unable to decide for themselves what medical treatments they might not want to have, or might wish to have and in what circumstances. This can happen immediately and with no warning due to injury or illness. That way, you are making your own decisions and are not reliant on doctors, a judge, or family (if they have any say on your behalf at all) to make decisions for you if you are incapacitated.
The easiest way to start is by using the following Charities. I used both to help me write my Advance Decision which is then printed, signed, dated and witnessed and I keep each signed copy in my handbag, in the car, on the noticeboard at home and with family.
Although it’s not necessary, my Advance Decision also specifies certain medical treatments (such as CPR, mechanical ventilation, artificial nutrition & hydration, tracheostomy etc) and at the timescale I refuse all of these medical interventions, irrespective of diagnosis or prognosis (as Paul also believed and had discussed with different people, but unfortunately didn’t put it in writing). Otherwise, my personal fear is that people and doctors can argue about aspects such as diagnosis and prognosis. Obviously this depends on beliefs, be it religious, personal wishes, family, work experiences or for whatever reason.
Writing an Advance Decision takes no time at all. It can be changed or updated at any time but once it is done you can go on living and enjoying life and it’s one less thing to worry about!