Ed: Have you been thinking about whether an advance care plan is something you should get around to doing? Perhaps you’re unsure about why it matters? Here, drawing on his caring experience and expertise as a registered Justice of the Peace, Palliverse Contributor Glen Davis muses about the relevance of advance care plans for us all.
If you live in Victoria and would like to know more about advance care plans, The McCabe Centre for Law and Cancer is hosting a community Q&A panel on advance care planning for patients living with serious illnesses at the Wheeler Centre in Melbourne tomorrow – Thursday 19 May from 6:00 pm – 7:30 pm. You can still register for this public forum aimed at providing patients, carers and community members a better understanding of how advance care planning can support better decision-making at the end-of-life.
We have the option to make plans that guide or direct the decisions made about our health care in the event we are unable in future to make those decisions for ourselves.
Notice this is an option and not an obligation. You do not have to make a plan and it is an offence for somebody to force you to.
First, a few terms. “Advance Care Planning” is the process of consultation, research and decision about what health care decisions are important to you. “Advance Care Directive” is the document recording your decisions.
The Advance Care Directive guides decisions that will be taken about your care by treating doctors. Certain subjects, such as directions refusing resuscitation, are binding on doctors.
The law varies in each jurisdiction. Some States allow a lot of freedom, while others require the use of the official form and tightly regulate witnesses. To find the deal in your State, type into your search engine “Advance Care Directive [my State]”. South Australia is the most prescriptive State, but it has a very comprehensive brochure with a lot of good suggestions about content.
The trend legally seems to be that Advance Care Directives will come to supersede, in time, the “Enduring Power of Attorney (Medical)” which appointed a person to make decisions about medical care on behalf of a person no longer able to make their own decisions.
That brings us to the real point of this little post : Why does it matter?
An Advance Care Directive allows you to record how you want decisions made about your health care if you are unable to make those decisions. You can have the peace of mind that you have chosen to receive what you wish in life-sustaining treatment, comfort care, palliative care and end of life. It allows you to choose who it is that you want calling the shots for you.
You can ease the task of those people who must make decisions when you cannot. When there are difficult choices to be made, the people you entrust to make them for you have the great advantage of knowing what you want. If you have not made an Advance Care Directive recording your choices, life can become very difficult for those directing your care, especially if their own views are different from yours.
Here are the kinds of events which bring an Advance Care Directive into effect. If you are unconscious or in a coma, if you suffer stroke damage, if you have dementia, if you are in an accident producing serious head injury or if you have a serious mental health episode, you may be unable to make your own health decisions. So there are quite a lot of different triggers. Notice that many of them can occur at any stage of your life and can catch you by surprise. Leave this decision one day too late, and it becomes permanently too late. There is no rewind button.
It is a compelling story. Wholly advantageous, no downside and it’s free (except in South Australia which has not been able to resist a few bucks’ fee for their forms).
Why then do the great majority of people being assessed for palliative care have no Advance Care Directive in place? Who is best able to help people write their Advance Care Directives? What is the role of the palliative care community?
We dislike having to confront our own potential disability and mortality. So we defer and hope to avoid the task. We would rather sip coffee in a sidewalk café and watch people go by.
In Australia, the Advance Care Directive has been unbundled and sits alone as an unpleasant task. In the US, 42 States have legislated to support a sensitive, helpful and well-designed package called Five Wishes, described as “A Living Will”. What the Five Wishes does in 12 pages takes the South Australian Advance Care Directive 62 pages.
Speaking as a sample of one, I exercised my medical power of attorney and wrote my wife Carole’s Advance Care Directive when she entered residential care, now in the final stage of dementia. That is not an option available under the law in some States, so you should check the law applying to Advance Care Directives in your State. A short form had been presented to me with the other admission documents and I filled it in. I was facing much grief about the admission into placement and I mustered the effort to rise to my responsibility. I knew Carole’s views because we had spoken long ago about the deaths of relatives. For myself, the task remains undone for the same reasons as most of the population.