As Palliative Care West Australia launches its new campaign “You only die once”, urging people to prepare an advance care directive, it seems the right time to post this clip when Studio 10’s Kerri-Anne Kennerley, Joe Hildebrand interviewed me.
In this very poignant interview, recorded in May this year, Kerri-Anne explains candidly that she never accepted or expected that her beloved John was just about to die. She asks how we should tackle the advance care directive, something we don’t want to think about before it’s needed.
For a start, there is never a right time. No matter when, it always feels like the wrong time.
So the simple answer, I believe, is just to start one and talk about it with those you love. Tell yourself as you sit down to look at the relevant websites that you will only consider it for half an hour today. Set the timer on your phone and then wrap up when it rings, with the promise that you’ll sit down at it again another day soon. But if you find yourself settled in and engrossed in the process, keep going.
There are several different approaches to advance care directives and a learned lawyer on a panel I sat on recently reminded the audience that once you register it with a lawyer it is a legally binding document. This means, if you say ‘not for resuscitation’ if you have a particular illness and then change your mind some years later, your out-of-date advance care directive might not say what you want it to say – it might give permission to stop resuscitation when now, 10 years later, you want another two years, even if this is with a very low quality of life.
Another problem, almost the opposite, recently pointed out by a gerontologist, is when the advance care directive is updated every couple of weeks – or even days – often at the urging of family, and no one can keep up. So the document creates more confusion rather than more clarity with medical carers as it keeps being re-written.
We have to remember that advance care directives are a relatively new way for our culture to manage end of life, so we are having teething issues. But the more we do them and the more we think about what we want, the more the concept will develop.
Some argue we don’t need a document, just a conversation with those we love. But I would say, that’s a huge beginning. The mother and daughter in Palliative Care WA’s promotion never talked about what the older woman wanted. This was not about medical care but whether her ex-husband should be allowed at her bedside – one of the social aspects of your situation at dying that you can address.
The good thing about having a conversation, is that you need to clarify your thoughts. Most of us find taking a few notes effective for this. Your notes don’t have to be long. Talk, conversation, notes. All are words, shared words. All are helpful.
To register to be part of a conversation on 11 steps you can take to have a better death, at Newcastle Station, go to: https://good-grief.com.au/lets-talk-at-secret-book-stuff/
For more about Palliative Care Western Australia’s ‘You only die once’ campaign, go to: https://palliativecarewa.asn.au/you-only-die-once-campaign/
For more about the End of life directions in aged care, go to ELDAC at: https://www.eldac.com.au