Advance Care Planning - Putting it in writing

Shaynee, 65 - Has made an Advance Care Plan:
I think that an Advance Care Plan is as important, if not more important, than a will. Can you imagine discussing with your kids, “Oh, I’m not going to make a will. You can have this, you can have that, you can have this”. I mean, I…if you said that to any thinking person they’d say, “Are you crazy not putting it in writing?” So you’re going to put in writing everything that happens after you die, but as to what circumstances you want to die under, you’re going to have a chitty-chat thing. Plus the fact that I really will never forget the picture in my mind of that, um, mother and…not mother, the sister and daughter begging the people in the hospital to let the mother go and the hospital people saying, “Sorry, you don’t have it in writing”.

Heather, 53 - Was Medical Substitute Decision Maker for friend, Glenna:
When it came to actually doing an Advance Care Plan, which it, it actually was very late, um, we’d had numerous discussions about her writing down what she kept telling me she wanted to happen, um, because her answer always was, “But, oh no, you know what to do. Do the right thing”. And I’m going, that’s all very well for me to know and for my family members to know I’m doing the right thing, there’s all these other people that are around you and they will question because what you’re asking doesn’t really fit with what a lot of other people, um, might choose to do. So yeah, she, she was absolutely adamant again that with, um, doing an Advance Care Plan that I should be there and maintain my medical Power of Attorney.

Terry, 80 & Mary-Anne, 49 - Mary Anne is Medical Substitute Decision Maker for her parents:
They had actually received the paper work through me, so that mum…my parents both had a chance to complete, um, to the best of their ability, what they wanted, um, out of the paperwork, so it was… um, had been… um, they were able to think about it ahead of time and then they brought those um papers to, um a meeting and then it was um, um, tweaked I guess; so finalized, lots of, um, discussion arose out of that.

Ted, 80 - Medical Substitute Decision Maker for wife, Jan:
The family have to know your wishes or that person has to know your wishes because some people in a family argue about whether you should be cremated, whether you should be buried, whether you should be put in a mausoleum and whether your ashes should be scattered wherever. This is the end of the, the planning section as to what you want done. The be…beginning is how to look after you medically up to that particular point, um, but it’s all in the planning and, um, every family should be aware of this and be able to fill these…and give people that indication as to what you want.

Mary-Anne:
Although you think you know your parents quite well, um, there’s still always a few, um, little instances that um have been brought to light. I know my dad’s had terrible problems with his neck over the years and, um, certainly dad writing down, “Oh, when I lie down in bed, I like to lie on my right side, and with this special pillow, in this particular way” – so you know, you suddenly know all of those little things now.

Shaynee:
I’ve also seen brothers and sisters, when a parent is terminally ill or suffering greatly and they’ve been given the option to turn off life support, or a child even, and there’s been family friction and arguments and even if the family agrees, there has been a certain amount of guilt involved - and I didn’t want my kids to have that.

Mary-Anne:
I think dad wrote in his Advance Care Plan about quality of life is certainly, um, including things like being able to move as best he can, use his hands. If he has to have a frame, well that’s not so bad, he could use that. Um, as long as he could eat and enjoy food, um, enjoy the family of course. Um, I think as long as he could at least hear the football, um, and hear Carlton winning, he would be very happy – and hear their theme song being played at the end of the game - that would make him very happy. Um, yeah, so there were things like that, I guess, mostly, but yeah, being able to…and certainly toileting and things like that were, you know, pretty important as well.

Ted:
As far as any discussions have taken place, have taken off… taken place between my family and they know my situation – it’s exactly the same as Jan’s; that we don’t want to be life prolonged, um, it’s to be ended comfortably.

Mary-Anne:
I think we’ve done the right thing. By doing the Advance Care Plan, I think that at least I have it documented and because it’s updated, um, I think every two years, we have another look at it and, and review any…and you can do it at any time but, um, it’s regularly updated, so we can keep on top of things as their health needs change.

Shaynee:
I was happy that my doctor had a copy. Advance Care was great there. They said to me, um, “Who would you like copies sent to?” And I said, “My three kids”. You have to give it to your GP because the GP just has to verify that you’re sane. I paid him a lot of money for that but…(she laughs) no, he verified that I’m sane and, um, what was great was that it could be… asked for it to be sent to all the local hospitals.

Mary-Anne:
The final Advance Care Plan was, was drawn up, um, and then sent out to, um, my parents and myself, um, and mum and dad had theirs signed by their GP as well and yeah, the final copy sent to me for safe keeping.