My name is Anne Gale, I'm the public advocate here in South Australia and I'm responsible for the Office of the Public Advocate.

Advance Care Directives are very important, they are a significant opportunity for people to express their wishes about their future care, their future housing, their future wishes.

If the unfortunate occasion arises where they lose decision-making capacity, if I make an advance care directive, I might appoint my spouse or one of my children to be a Substitute Decision-Maker.

I am them empowering them to make decisions with, and for me, if things change in my life and I can't make them for myself as well as I could in the past.

People's lives change all the time, it's not just about getting older, something could happen in your life. It could be temporary even; you might have a car accident and you're not able to make some decisions for a period of weeks or months, the person might get better, but it might be lifelong change for some people.

The Office of the Public Advocate and the Department of Health and Wellbeing Office for Aging Well, have partnered together to develop this toolkit for people who are appointed Substitute Decision-Makers.

This toolkit is designed to help people understand their role as a Substitute Decision-Maker and assist them in conducting that role responsibly and as the person who made the Advance Care directive would have wished.

The most important message I would leave with a person, is to respect the person's wishes, get to know what they would have wanted, and you are responsible for making decisions as they would have made them.

It's not a role where you take over decision making or make decisions that you think might be right.

The role is about what the person would have wanted, and sometimes we all have different opinions about that, so it's important to step back be objective and fulfil the role as the person would have wanted you to.

Their wishes, their values, their life.

My name's Elizabeth, and my brother and I were appointed Substitute Decision-Makers by my dad.

He'd done his Advance Care Directive a couple of years before he died, and we got the guernsey with the support of our other siblings to do that.

I think it was incredibly helpful that Dad had an Advance Care Directive, and that we were able to act as his substitute decision makers in that last period.

The key bit is that we knew what he wanted and that we were able to advocate for that. He was in the second world war, and he had a quite major wound and so spent like a year in hospital and apart from that had been remarkably well, so it wasn't until very close to his death that he needed real assistance.

He'd gone into hospital with a sort of gout is what we thought it was, some sort of weird thing going wrong with his foot.

It was a country hospital they didn't have any regular medical staff, so they were having Locum staff coming in, it was it was not the ideal situation, and working out what actually was the matter was difficult, and in the meantime, he was obviously deteriorating, he was getting much weaker and less mobile.

As time went by he was less engaged you know, he was detaching in a way he was kind of handing over the reins in a sense, and one of the key things about that was that he really did want to go home and one of the things that he'd said in this Advance Care Directive was that he wanted to die at home, and as it became clearer that there wasn't going to be any real improvement and that there wasn't anything more to be done - he didn't want anything more to be done, then we began the discussions of, how can we get him home.

It so took the pressure off of us because we knew what he wanted.

In most aspects Advance Care Directives aren't legally binding, but actually knowing what the person wants it makes it so much easier to think well we're going to do our best to give him a really good send-off, if he's going to go, we want to make it as good as possible, and we've got his ideas about what would that be for him.

If we hadn't had an Advance Care Directive, then we would have been much more in the dark as to what was the best move.

I would have felt a lot more pressure to do a lot more active advocacy and I would have felt a lot more pressure to negotiate in potentially difficult circumstances with my siblings who were fantastic, but it's partly equals dad said what he wanted, and if Dad hadn't said what he wanted I may have had to persuade them about what he wanted and that would have been harder for sure.

So having something that had been written up when he wasn't really unwell, he'd done it in his own words, really, really helped.

Probably the most important thing it's a precious opportunity, it's an amazing honour really to be trusted with that role, and I'm so glad and grateful that we had the chance to do it for him.

He really made it easier by having the Advance Care Directive, and I hope that we could make it easier for him in his last days to have this easy and secure and peaceful a time as possible.

Your role as a substitute decision maker is set out very clearly in the Advanced Care Directives Act. It talks about how you should make decisions, when you should make those decisions, who should be involved in decision making. It talks about the principles that you have to kind of abide by to make decisions for the appointer.

Your Role is really to uphold the wishes of the appointer and the instructions and the values that they have written down in their Advanced Care Directive.

The other thing an appointer can do when they make an Advanced Care Directive is they can appoint one or more substitute decision makers and they can be specific in the document if they want to about how those decisions are made by their substitute decision makers.

You might be able to make decisions together or separately but you advise each other of the decisions that you make.

When you are undertaking the role of a substitute decision maker it can be tricky to know how to make decisions and what to give preference to and so as a bit of a guide the first consideration really is the wishes of the person who made the document and the person who appointed you.

You want to be really clear about the appointer's wishes and their values and their beliefs including their cultural and religious beliefs.

While we might sometimes think that we should make the decision that's best for the appointer or in their best interest that's really not what the Advanced Care Directives Act asks of the substitute decision makers - it's really asking for them to make the decision that the appointer would have made themselves and in some cases to take on a level of risk that the appointer would have wished to take on and that's in line with the decision that they would have made and in line with their whole kind of lifestyle and their history of decision making for themselves as well.

The principles of the Act say that the wishes of the appointer are really most important and then underneath that we also need to consider as substitute decision makers that we should choose the least restrictive option. We should make sure that their freedoms are not restricted more than is necessary.

There might be family members or friends that the appointer may or may not want involved in their life or in their care and they might have expressed those wishes.

They might have written them into their Advanced Care Directive and so it's important to uphold those wishes around how they would want information to be shared and people that they would want around them.

You should really as the substitute decision maker have conversations with the appointer about the things that are important to them while they have decision-making capacity and especially before you sign the Advanced Care Directive.

Before it's witnessed and completed you should have a conversation with the appointer about their wishes and the things that you'll be expected to uphold and make sure that they're things that you can feel okay about.

It's important to know that as a substitute decision maker your role is to uphold the wishes of the person and to stand in their shoes when you're making a decision and it's also important to know in particular what the binding refusals are that they've made in their document.

A binding refusal relates to instructions in the Advanced Care Directive around health care that the person would want to avoid or outcomes that they would want to avoid or health care that they wouldn't want to receive.

As a substitute decision maker you would step in and make decisions for the appointer when they're not able to make a particular decision for themselves. Sometimes there are scenarios where there are disputes that arise about decisions or about who should be making a decision and you can contact the Office of the Public Advocate around that as well.

We have a dispute resolution service - we help people to talk about decisions that need to be made, to stay future focused, to talk about the person's wishes and to talk about their needs and what their Advanced Care Directive says.

We get people together to resolve those issues. We help them to talk through their concerns, any issues that they're having around decision making and we try and help them to prioritise the wishes of the person and to come up with a plan or an arrangement that everybody can work with so that they can move forward and make decisions.

Standing in the appointer's shoes as a substitute decision maker you might come across decisions that you're asked to make that are really difficult or challenging and you might not know how to approach that and there are a few things that you can do that might help.

One is to ask lots of questions. Ask health practitioners and service providers for their point of view on things. If you're jointly appointed or if the appointer has appointed more than one substitute decision maker you can talk amongst yourselves about those decisions.

You can also talk with friends and family of the appointer as long as that's something that they would have wanted you to do. You can share information with other people and get their assistance or their input into decision making as well.

If you're wondering about what the Advanced Care Directives Act says or about what your options are around certain decisions you can also call the information service at the Office of the Public Advocate. We give people information about how to approach those decisions every day and we love to help people.