Advance Care Planning - Starting the conversation

Shaynee, 65 - Has made an Advance Care Plan:
I think all of us arrive at the decision to make an Advance Health Care Plan through a lot of different paths. Um, for me, um, in a very vague way, I saw films and media about people who were injured or disabled and the thought was at the back of my mind “Gee, I don’t think I’d like to go on like that”. But what brought it home more was my partner died about three years ago from lung cancer and then about…so watching that, also made me think perhaps more deeply and then my mother suffered her sixth stroke. I’d been caring for her up until then but when she was in hospital with the sixth stroke, um, there was a gorgeous little old lady of ninety-seven, lying next to her, who weighed about thirty-five kilos. And while I was talking to mum, she appeared to me to have just gone into a lovely sleep – this lady. However, it was the time of afternoon tea, the nurses came in, discovered she wasn’t breathing and called a blue alert.

Everyone raced in and started giving her, um, artificial respiration, And during this period, her daughter and her sister arrived and begged the staff to stop – to let their mother go. Um, and the staff refused, on the grounds that they had not done any Advance Care Plan and they actually brought her back, which I, I couldn’t agree with and it distressed me greatly because she looked so peaceful and she was so ill.

Heather, 53 - Was Medical Substitute Decision Maker for friend, Glenna:
We had a fairly close, personal relationship, so we’d see each other probably a couple of times a week. It was often around the children, um, she…and I’m in the medical field. She did not have a good understanding of medicine at all. She had a few, um, medical issues. She eventually started asking me about them, um, and most of the time I was right because then she’d go to the… to her GP and find out that yes, I was right. So, she developed that trust that I actually did understand medicine and health reasonably well.

Terry, 80 & Mary-Anne, 49 - Mary Anne is Medical Substitute Decision Maker for her parents:
Having worked in, um, acute coronary care units around Melbourne for, um, the last, whatever, twenty plus years, um, I’ve found, um, circumstances where, um, a patient has been unable to communicate what, um, their wishes would be as regarding medical treatment - um, whether to consent to it or, or refuse it - um, and then it falls to, um, usually a spouse or a, um, a child, um, one of their children, so, um… to make those decisions and often times, it’s not easy – it’s a stressful situation for those concerned and they have to make the best decision that they can. Um, and sometimes there is conflict because, um, there might be two siblings or, or a spouse and sibling who don’t understand, um… um, or they do understand but they don’t necessarily know what their, um, parent or wife or husband would want, um, and, um, they’ve both got…wanting to do the best for that person but they disagree on what they think is the right way to go.

So, if you have an Advance Care Plan, I could see that if that is documented ahead of time and you…everybody’s on the same page, it makes it so much easier for everybody concerned. So um, my parents had recently asked me to, um, be their Alternative Medical Enduring Power of Attorney, so, um, I was very honoured to be entrusted with that role, so I felt that the Advance Care Plan linked in beautifully with, with that. So, I decided that, um… to bring them along and have them complete one, so that we were all on the same page.

Ted, 80 - Medical Substitute Decision Maker for wife, Jan:
When we first discovered Jan had a problem was when she started to lose her confidence. And, how we noticed that was firstly it was with her driving. She’d make excuses about not being able to, to drive to certain facilities. And I had a collapse back in 2003, taken to Monash Hospital and she wouldn’t drive over there. Now, we thought that was a bit peculiar that she wouldn’t do it but, um, we arranged for other people to take her there, when it was necessary – but I was there for a week. Um, that was one of the things. Now, the doctor was also suspecting something was wrong so, um, she then sent Jan to a specialist in Aged Care, who actually played golf at the same club as Jan and, um, he then said that - to me - that things weren’t as good as they could be.

Heather:
When I approached her when she became less well and I knew she didn’t have supports other than us and we had moved away from where we had been living, I suggested that she should get somebody to be her advocate. Um, I had a sense that she probably would ask me but I wasn’t keen to do it because I knew that her, um, life was fairly complex and that it would be quite difficult to unravel when she, when… ‘cause I knew that the way she lived her life it would be when, not if - um, it would be hard to unravel if someone was her advocate.

I suggested a solicitor, I solicit…I suggested an accountant that she’d had a long-term professional relationship with, um, so someone who was separate. I also suggested that she could go to the, um, office of the Public Advocate and ask them. She didn’t want a bar of that. She wanted somebody she knew, somebody she trusted, um, so she went through and got financial and medical Power of Attorney and both were for me – and again I was a bit reluctant to have both but she was adamant.

Terry:
It took a little while to sink in that, that this sort of thing should be done but then we heard her reasons for thinking it and, um, despite the fact that all our, our remaining children get on well together, there, there could, could be… differences of opinion arise. So, um, we were quite happy to go and do this.

Ted:
Because we’ve had discussions when she was well enough, and because we knew a lot of people, um, who had been suffering and she had said, “I don’t want to be like that. I don’t want to have… end up my life with these things up my nose and all wired up for sound. Just let me go”. So, I was able to sign those papers accordingly and just said, well, if she does suffer a stroke or a heart attack, then she is to be made comfortable, and… as possible, and not be kept on life support - because her quality of life is no longer.

Shaynee:
Quality of life was very important, for me. For each person, it’s different but for me, I didn’t want to spend years being fed by a tube, laying on my back, not being able…in a nappy. I just didn’t want to go there. And then a friend mentioned to me – I, I honestly had never heard of Advance Care Plan – and a friend mentioned to me that she’d made one and I said, “Oh, yippee! Um, can you give me a phone number?”