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Friday, June 24, 2011

Something vital - an Advance Care Directive

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Yesterday I signed what was probably the most important document of my life, and it has given me enormous comfort and relief to have done so. If I were being dramatic, I’d say it’s the most important document of my death, except perhaps for my Will.

    But this has nothing to do with a Will. That, in my case, was dealt with long ago, and if you haven’t made your Will, then you should. It will save a lot of people plenty of trouble if you do. My father died intestate; i.e., not having made a Will, and this had a tremendous cost for my mother I won’t go into here.

    The document I’m referring to now is called by various names, but in the end they amount to the same thing. The one I have filled in and signed is called an Advance Care Directive. It is designed specifically for people who are generally regarded as terminally ill.

    Even if you are not in this fairly exclusive club of ours (hey, we don’t let just anyone in!), the document contains things worth thinking about, especially if you may be placed in the position of being a carer for someone likely to die soon because of their medical condition.

    Don’t be spooked by this. It’s too important for pussy-footing about. Practically no-one knows just when they will die, and the precise manner of their death, even if they think they do. But some of us have the privilege of knowing how, when and why we might expect to die. Others have the burden of knowing this about someone they care for. That burden can be made a lot lighter for them, and a comfort to you, through an Advance Care Directive, also  known as a Living Will.

    If you’re suffering from an illness that your doctor tells you that you can expect will significantly reduce your life expectancy, you need to make an Advance Care Directive, and that’s what this about.

    I‘m talking now directly to the person who is terminally ill, but if you‘re caring for someone in this situation, then adapt my language to suit. I’m being blunt because there are some who don’t accept that they could die soon, and they need a wake-up call to deal with this.

    The devil, as they say, is in the detail, and it’s the detail that may decide whether or not your death is as comfortable as you would want it to be. Making decisions about some things while you are able to do so will save you from a fate that may be worse than death. Literally – I’m not being melodramatic here.

    For some of you, certain decisions absolutely critical to the way you will die are often left too late for you to have a say in them. They’re left till you can’t make them yourself, and that means someone else has to make them for you – if the law permits. It turns out that it can be a very big 'if'.

    That’s OK, you might say – my parent, spouse/partner/children will know what I would want and make the right decision. Or my doctor will know. I’ve made it pretty clear.

    It’s just not that simple. They may not know some very vital things that only you do. Even if they do know these, if they don't have them down in black and white, signed by your doctor and certified by a JP, you could be trapped in a limbo that is terrible not only for you but for your family, whose hands are now tied because they don’t have the legal right to do what they are pretty sure you would want.

    Impossible, you might say. No, you’re wrong. It can happen, has happened and will continue to happen without an Advance Care Directive.

    Now that I’ve cleared the deck, I’ll write in a second (and final) part what the critical bits are and you'll quickly see why you simply can’t afford to ignore them.

pt 1 << you are here | pt 2 | home | WHAT'S NEW! | stories from my past


  1. This is so important. Really, any of us should have it, as we never know when we'll be left severely incapacitated by an accident or other unforeseen event.It's not that easy filling in the ACD, quite confronting, as we found when doing one with my mum. Her doctor helped us quite a bit.
    The funny thing was, when mum, aged 88 and suffering many after effects of a stroke 3 years ago, was suddenly taken to hospital recently, almost comatose in what looked like another stroke, and was asked (when she was vaguely aware) if she wanted 'intervention' (ie resuscitation if necessary) she said, yes, of course! She has no understanding of her age, where she lives and why, these days. As it was, she recovered anyway, but I did have some awkward moments there.

  2. Thanks very much for backing me up, Julie. I know you have had to face all this as the primary carer for your Mum, so whatever you say on this comes from experience.

    I did make an adjustment to the original posting because it looked like ONLY terminally ill people could have an Advance Care Directive. Of course that's not true. Anyone can, but as I said above, the posting is geared very much to the people in my category.


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