An Advance Care Directive - a document which sets out an individual's wishes for care and treatment if they are unable to speak for themselves - are a minefield: emotionally, legally, logistically, ethically and financially. I mean, where do you start?
Let’s take a step back and I will tell you what happened to my wife and I when we went to make a will, which is called estate planning even if you don’t own an estate as I, disappointingly, do not. It is in some ways like end-of-life planning or decision-making.
We were going well talking to the solicitor about what we wanted to happen to our possessions in the event of untimely death. Everything was fine until we got to the children; the difficult decisions such as what should happen if we both died suddenly in a car crash and their grandparents were also fatally injured? We hadn’t thought about that, so we said let’s go home and have a chat about it and we will get back to you. And so we did - and 10 years later we still haven’t gone back.
I mean we keep meaning to but you put these things off. Don’t you?
End-of-life decision-making is hard but only a small bit of it is difficult really. Most of us know what we don’t want, we don’t want to suffer or be a burden on those we love, or to survive in a state where we could not move, communicate, think or experience the world around us. Where it gets difficult is with the ‘what if’s’.
- What if you needed a short period of life support and then you got 65% back to the way you were before you got sick?
- What if you had chemotherapy for cancer and you had a stroke and went deaf from drug side effects?
- What if your heart stopped at the supermarket should your family try to do CPR if they know how?
- What if you really understood all the different terminology and legal implications?
Put simply, there are too many possibilities to think through for everyone so all you can do are two things: communicate your values so people around you and who might care for understand what is important to you and secondly make someone responsible for representing these values and your interests if, and when, circumstances require it.
If you create this clarity of vision and sense of responsibility around you, this provides your family and friends with a mechanism through which to influence what can be influenced in a manner which respects your view of the world. There are different ways of recording and communicating your values and priorities and there are different levels of responsibility you can allocate to a trusted relative or friend.
In a follow up article to this one my colleague, Jane Anderson, a solicitor and barrister who works with the Guardianship Board in South Australia will further explain the different legal implications of such choices.
From the perspective of a doctor who has to talk with patients and families during difficult times at the end of life, it is of tremendous help to have an objective record of the kind of outcomes which are acceptable - or not - to patients. It is also of great help to families to know who has the mandate to communicate on their behalf.
Advance Care Directives are legal documents with specific requirements of witnessing and consent. Advance care plans and clinical plans and pathways are informal, and represent the opinions and views of those involved in their creation. They must be current and inclusive. I will leave to Jane to demystify this issue some more.
In the meantime, just remember that an Advance Care Directive is like insurance - it doesn’t matter until you need it.
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