Advance Care Planning - Making it easier for everyone

Heather, 53 - Was Medical Substitute Decision Maker for friend, Glenna:
I always had my documents with me so I’d really advocate, whoever is the advocate, to carry them with them all the time. From the, the moment I had them, I had a package that went with us everywhere - um, not literally everywhere but most places. Um, I carried it with me and the other thing that was interesting was when I produced it and wanted to give it to people, in fact, people wouldn’t take a copy and I had to insist and I was insistent because, because I wasn’t a blood relative - that’s where I was coming from and as a health professional, I was very much aware that it’s really important to know who is the contact person.

Ted, 80 - Medical Substitute Decision Maker for wife, Jan:
Well, it’s similar to all the other documents that you have. Now produced, it’s going to assist family and the facility that the patient has now gone into, to um, take care of you in the manner that you wish this to happen.

Heather:
As she deteriorated over a couple of years, so she was, um, she died nearly two years ago so about eighteen months before that, she’d had quite a significant admission to a major hospital. Um, so from that time on, she just steadily declined. She, she desperately wanted to stay in her own home so she was allocated a case manager and I suppose we just threw everything at her. We had funding, we supplemented with private money, just keeping her in her home.

Terry, 80 & Mary-Anne, 49 - Mary Anne is Medical Substitute Decision Maker for her parents:
Now that we have the Advance Care Plan, I can see that, um, because it’s there in black and white, I can actually say to all my siblings or, or my mother or my father, whoever it is that I need to discuss it with, um, that this is what that person would want. Here it is signed by them. This is what they would want, um, and letting, um, my siblings know that it’s okay – I’ve heard what you’re saying and I respect what you’re saying but this is what mum or dad would want. And don’t feel bad that you haven’t done your utmost to protect them or, um to, um, look after them and give them the best that you wanted for them.

If it hadn’t been in writing, I don’t think I could’ve convinced anybody that what she wrote down was what she wanted. Um, they would’ve accepted the not for CPR, that’s pretty common – once you get older, it is not…fairly futile thing to do. The no tubes feeding, that’s fairly common but the other things about being able to sit in your recliner and just watch TV and eat chocolate, that, that’s… that’s not that common. A lot of people don’t see that as quality of life. So, to be able to advocate for that, you’ve got to be really firm and having it in writing just makes it that much easier.

Shaynee, 65 Has made an Advance Care Plan:
One of my questions was, to the Advance Care, what happens if you get a really religious doctor who believes in “life” at all cost? You know, life is everything. Give them anything to keep them alive. I said, “What would happen if the kids come along and say, “No, our mum made an Advance Health Care Plan and we’re not, you know, we want that carried out”. And it was actually a very interesting answer. Apparently if they went, if that doctor was prepared to go to court and they did not have that written, and I could not respond, their chances were wooh. But, if they had the written Advance Care Plan, they would win. And um, first of all, I don’t want them to go to court. I don’t want anything like that but that, that was also reassuring for me.

Heather:
I think the Advance Care Plan was also probably even more useful for the case manager because then she was able to say, “My client, this is what they are saying, I’m not being unreasonable”. Because the case managers have case, um, meetings and I, I believe she was having a lot of difficulty saying across to the other case managers, “No, this lady really truly wants to stay in her own home and we are going to continue to provide her, as much as we can, until we, you know, we’ve reached that absolute limit”. And to be able to get across to the case managers that this is the type of personality that is the client.

Mary-Anne:
Memories aren’t all that reliable, no matter how old you are, um, and also, everybody’s viewpoint will be very different, um, because I know, even amongst my own siblings, they would all say “Oh, but I remember this” or “I remember that” or “I think mum or dad would want this” and we all remember things differently and have different experiences. So, it needs to be absolutely clear in that instance really, what, what that, the person wants, not…not what we think.

Terry:
Make it all black and white, there’s no grey in the middle.

Mary-Anne:
Yeah, it cuts out the grey, that’s right.

Shaynee:
I got wonderful peace of mind from having my Advance Health Care Plan. And in fact, even though my children argued somewhat, I noticed two of them went out and made Advance Care Plans. So, I think it gives most of us peace of mind.