Taking care of dying time - long version

Text: We would like to acknowledgement of Traditional Owners of the land. We would like to pay our respects to the elders past, present and future.

Text: Advance Care Planning is about having a conversation with your family, friends and medical professional about the kind of medical care you would want or not want, if you became seriously ill or injured.

Voice: My name’s Chris Thorne. I’m the Aboriginal Community Support Worker for the Koolin Balit project and I work for the PCP in Benalla. I’m going to have a bit of a yarn about advance care planning.

So, I thought it would be really good to tell the story of my lived experience, of how important it is to have an advance care plan. I’ve just been through a situation that wasn‘t real good, and there wasn’t an advance care plan to help us out.

So, I think, it’s pretty amazing how time goes on and you spend a lot of time with the people that you love, the people that you care about and for all different reasons, we have those people in our life. I don’t think we ever get really ready and prepared for those phone calls that happen. And, I had one of those phone calls and they told me that Uncle was rushed to hospital and he wasn’t looking too good.

So you go into panic mode and he was a long way away from here and I just didn’t know what to do first. I knew I had to get there, but I didn’t know the things I needed. There were work commitments, there’s family commitments, there’s all these things, and it sends you into chaos. You have strange thoughts and crazy thoughts but I knew that I had to be there. I just had to go. So as quick as I could, I got organised and off I went on this journey. They took me up to Intensive care. I walked in and saw someone who I love, lying there on life support and I just, well I lost it.

Then I had this overwhelming thought that I needed to be strong for the other young fellas there. I was the senior man there and I needed to bring it together and help the others deal with what was going on there. And that starts the journey of how hard it was to be there with someone that you love so much and know that you can’t do anything. The doctors are trying to do everything they can and the family is just not in a good place.

The family starts talking about the what-ifs. What are we going to do and how we’re going to do it? It didn’t take long to work out that there wasn’t an advance care plan and that just made things a whole lot worse, because then the arguments started about, “Dad never said that, he said this”, “no, no, no, no, Dad didn’t say that, he said this”. Because of the emotions in the room, it turned to anger pretty quickly. I felt that it was my responsibility then, to step into the middle of some pretty angry accusations. We talked, we cried, we laughed, we yelled, we screamed; every emotion you can think of.

It has been the hardest thing I’ve had to do in my life so far. I had that man in my life for 25 years. He grew me up. He took me off the streets and he grew me up. He taught me about respect, he taught me about love, he taught me about commitment, he taught me about culture. So I knew that he had given me what I needed to get through this. I didn’t know what an advance care plan was until all this happened, but I sure do know now.

When the doctors came in, as they did many times, to talk to me being the senior person there, and asked me to talk to the family about – have we thought about turning off the machines? How do you say that to someone? How do you talk about a subject like that, when all you want is that person you love so much, back? But it had to be done. It had to be done.

So, I thought the best thing was to do it outside the room. So, the hospital had a really nice outdoor garden, so we sat there, we had a cup of tea, we cried again, we laughed some more and I thought of how important it was to be able to tap into those emotions. So I used these, to tell the kids about some of the things that we used to do when they were little and it was amazing to see how they turned that around. So then we could make an opportunity to talk about the decisions we had to make.

I wouldn’t wish it on anyone, having to sit there and go through those sorts of emotions and not knowing what to do. How easy it would be to be in a position where every one of us had had an advance care plan? If every one of us were aware of what his wishes were. If every one of us was strong enough to carry out his wishes, without the arguments, without the yelling and screaming. Without the negative stuff. I wish we had have had one, but we didn’t.

So I’m telling this story because I want people to realise that everyone in your family needs an advance care plan. You need to talk about this; it’s not just a thing for old people. It’s for everyone in your family that you care about: your children, your aunties, your uncles, your brothers, your sisters, your partner. Everybody needs to talk about this subject, so you don’t have to go through what our family went through.

I hope that this little yarn will get people to think about it, and at least bring up the subject with their own family. Because I think it’s extremely important. Because how would you feel standing at the end of the bed, looking at that person that you loved as much as the person that I loved and not knowing what their wishes were? How do you know whether that person you love wants the machine turned off? How far do they want to push the health care? Were they terminally ill and they just gave up and they just wanted to be left alone to die. How do we know if we don’t talk about this stuff? How do we understand what our mums and dads want? But more important, how do we understand what our kids want? Our kids need to talk about this subject.

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But how wonderful would it be if you talked about this. If you all had an advance care plan. If you all had the same piece of paper, and every one of you knew you had it in your file. So if you were ever faced with this horrible thing, every one of you in the family could pull out the advance care plan, you’d have your family meeting, everybody‘s on the page, everybody knows what mum, dad, brother, sister, kids, know what their wishes were. How amazing would that be?

You wouldn’t have to go through all the trauma, all the problems, all the anxiety, all these horrific things, because everybody’s arguing thinking they know best. You can download off the internet, advance care plans and fill them out. And you don’t have to be a Philadelphia lawyer to fill it out. You can just fill it out; spread it around with all your kids, your family, one to your doctor and you got it. And there’s no arguments and we can change it at any time you like. We know that you’ve taken care of your dying stuff, so you can get on with your living.

It’s like there’s this HUGE weight off your shoulder that I’ve taken care of my dying time. All of us need an advance care plan, so none of us have to go through that trauma. That’s how much we love our kids and our family. That’s why we should do it. Have a think about it.