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. Press had already turned up at the door and I was scared, so thought the only way is to go through a professional media agency.
Family, friends and acquaintances would comment on how if they were in Paul’s state, they would want family to let them go and many had already had the conversation with their loved ones. It became apparent then that people do not realise how powerless we are to enact on others’ beliefs and wishes, unless the affected person holds a legally binding Advance Decision to Refuse Medical Treatment or Lasting Power of Attorney. Whilst he was in hospital, it was myself informing medical staff that Paul did not hold an Advance Decision, but never were myself nor family asked first if he held one; he received treatment by default.
I have done a dozen newspaper, magazine and TV interviews to raise awareness of Advance Decisions, urging all adults to hold one. I could not raise awareness until the defendant in the Criminal Case was found guilty or plead guilty, so the first national media interview was in June 2016. Paul’s case has also been on the front page of newspapers, headline TV news, discussed on radio and talk shows and is used in legal and medical training courses, lectures, seminars and in literature regarding Court of Protection matters, Disorders of Consciousness, Advance Decisions, Medical Ethics, 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) 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 hold 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 say for themselves what they would like to happen. This can occur immediately and without 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 and if mental capacity and the ability to make your own decisions is not going to return.
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 and witnessed copy in my handbag, in the car, on the noticeboard at home and with family. You can also give a copy to your General Practitioner.
Although it’s not necessary, my Advance Decision also specifies certain medical treatments (such as mechanical ventilation, antibiotics, artificial nutrition & hydration, tracheostomy, etc) and the timescale I refuse all of these medical interventions, irrespective of diagnosis or prognosis (as Paul also believed and had discussed with different people). Otherwise, my personal fear is that people can disagree about different aspects. Obviously this depends on beliefs, be it religious, personal wishes, family, work experiences or for whatever reason.
Writing an Advance Decision to Refuse Medical Treatment takes no time at all. Paul and I often discussed our fears of having some kind of accident or illness and being left in some terrible, helpless state. With an Advance Decision, you can help plan for an event like this happening, secure in the knowledge that should the worst happen your wishes will be respected. Then it’s done! Although you can revise it at any time.