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Saturday, June 25, 2011

The Advance Care Directive (pt 2)

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Having blathered on in my previous posting about how important this document is for someone who has been told by a doctor treating them that their ‘life expectancy has been significantly reduced’ by some condition (or, to put it bluntly, they’ve been told they are likely to die before too long), let me explain just a couple of things about it.

    Any adult can create an Advance Care Directive that suits them, and a document for this purpose can take many forms. It's a good idea to do so, no matter who you are or how old. Who knows when we might suddenly find ourselves in such a situation? But what is below is directed specifically at people in the category of 'terminally ill', as it will suit their circumstances better than a broader Advance Care Directive available to anyone. 

1. As you see from what I said in the first sentence, a professional is involved before you start. You can’t decide the Advance Care Directive completely on your own if you want it to be a relatively simple process. You need a diagnosis from your GP or other treating doctors that confirms the nature of your illness.

    Only then can you make an Advance Care Directive that is as legally valid and uncomplicated as it can be for you. The last people you want to be deciding your fate are lawyers, trying to make sense of a document you've concocted!

2. In the document, you make known your wishes about a number of things. In fact, it’s stronger than that. You direct medical staff to respect these wishes.

    The details will be on the form you get, but they deal with things such as how you want resuscitation to be handled in an emergency, artificial feeding or administration of fluids.

3. You can make a direction about when the time comes that you are getting near to death. Let’s not mince words. You need to think about exactly what palliative treatment you want. Put simply, palliative care treats pain and/or makes you as comfortable as possible, but doesn’t aim at treating your underlying condition because that’s probably past being treated. It is intended to make things better for you as the end approaches.

    Do you want to be kept alive for as long as possible, no matter what? Do you want nature to take its course, as far as possible? Exactly what lawful medical interference, if any, would you like or expect while you are dying?

    These are serious questions and I feel sure they should be discussed with someone else – e.g., your GP or carer - because what you decide also affects what they do at the time and thus puts responsibility for you and your treatment squarely on their shoulders.

    In that sense, even though it’s a critical time for you, this is one time when it really is not just about you. They are going to have to live with your decisions and what you ask of them, and that is not likely to be easy for them, no matter what. That's why clarity is needed; why this document is so vital.

    That’s about it, really. Remember, this is just me talking. There are real experts in palliative care out there, and it would be wise to seek their guidance while you still have your rational faculties and you’ve accepted that you do need to make these decisions at the right time.

    That time is NOT when you’re lying unconscious at the final stages of your illness in Emergency or hooked up to a battery of life-prolonging devices. You need to have a say in this. Don’t leave it to others if it can be avoided – it’s not fair on you or them.
NB You can get similar forms online to the one we have, but when we investigated all those, we felt they were unnecessarily long and complicated. The one we used is plain, easy to read and understand, and seems to cover everything adequately from a legal point of view.
Let me be clear that I’m talking only of Australia here. Other countries have different laws, so if you think it’s something you want to make a decision about and you live elsewhere in the world, you’ll need to be sure how it’s done there. One thing I do know is that laws on this vary widely, not only from country to country, but often from state to state within a country. I can't even be certain that what I said applies uniformly in all states of Australia.
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  1. Thanks for the information. I had no idea such a thing could be done. I can see how this would be a great relief to get done and would give much-needed peace of mind.

  2. And thanks to you, Jackie, for making people more aware of what's involved in 'letting go' via Twitter. For those of you who don't know about it, don't fail to read this story:


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