Richard was very grateful that he was able to make a legally binding document (in England and Wales) called an Advance Decision to Refuse Treatment, also sometimes called a Living Will or an Advance Directive.
An Advance Decision allows you to write down any treatments that you don’t want to have in the future. This will only be used if you can’t make or communicate a decision for yourself.
Because it’s legally binding, a healthcare professional has to follow it (provided they know you’ve made one). If they ignore an Advance Decision, then they can be taken to court.
For Richard, this gave him peace of mind, because he wanted to be kept pain free, even if such treatment shortened his life. The existence of the Advance Decision meant that I knew this, too and so did the rest of the family. Because we all knew his wishes we did not have to make difficult decisions at a very emotional time. If you would like to know more, please see compassionindying.org.uk/making-decisions-and-planning-your-care
From compassionindying.org you can download a template for an Advance Decision as well as factsheets and research documents.
Sadly, the latest research shows that GPs don’t always understand that Advance Directives are legally binding. This research also shows:
- that GPs have a reluctance to discuss dying, even when the patient knows their illness is terminal. politicshome.com/news/press-release/compassion-dying/105793/gps-lack-sufficient-awareness-and-understanding-living and
- that they need to do more bmj.com/content/366/bmj.l5065.full
It is therefore important to make sure that you give your GP’s practice a copy of your Advance Directive and that you make sure your next-of-kin know your wishes.
My tip: Make an Advance Decision now. You never know when illness or accident will strike.
In addition, Richard held a formal document recording the fact that he did not want to be resuscitated, which he carried everywhere in his wallet.
Richard took the original documents (Advance Decision and DNR Form) with him when he entered the hospice and he immediately made sure that doctors and nurses were all aware of his wishes, because he knew there might come a time when he could no longer communicate.
Sadly, not everyone is able to make their wishes known so clearly: in such a case these documents become even more vital.
Another recent report from Compassion in dying shows that, of those where a close family member or friend died recently, approximately half felt they died well (42%) and a half felt they died badly (45%).
Of those who died badly, people believe better communication (39%), improved coordination of care (33%) and being able to die in place of their choice (31%) could have made a positive difference.
My tip: If you know that you do not want to be resuscitated, speak to your doctor and your loved ones and make sure they all know your wishes. Obtain the appropriate form from your GP’s practice to carry with you.