CASE STUDY: Talking about choices

Discussion of advance care planning in the community is a great way to prompt individuals to think about their own advance care directives and things they need to consider when talking with their family. A community discussion focused on how advance care planning can be a warm and supportive place for people to talk about their beliefs, such as their preferences regarding their substitute decision-maker, end-of-life treatment and place of death.

Catherine is a volunteer with Advance Care Planning Australia (ACPA) at Austin Health in Melbourne. She is one of a small group of highly qualified and experienced volunteer ambassadors who implement ACPA's Community Education Program. The volunteers are supported by training, supervision and ongoing education, and are linked to the ACP Advisory Service. The program visits community groups throughout the broader Austin Health catchment (north-eastern metropolitan) area to provide education and stimulate discussion about advance care planning. The volunteer ambassadors encourage people to think and talk through solutions to sensitive situation raised during advance care planning. 

People's preferences, as written in their advance care directives, are ideally workable and flexible, Catherine says.

"For example, when choosing their substitute decision-maker, people say, 'What if the person lives overseas?', and I say, 'Well, it's doable, but it could make it difficult. The person overseas might be the only option you've got, but it also has to be a workable arrangement."' 

Ideally someone local is a better option.

Catherine says a lot of people don't realise that there is choice at the end-of-life. They feel that medical decisions may be out of their hands because they don't have medical expertise.

"But it's not a 'medical merry-go-round' that get on and can't then get off. You can become informed about your health options ahead of time so that you can make choices about the kind of care you'd prefer and exercise your options and make choices about the kind of care you'd prefer. 

"There is a broader death literacy that we can all develop. For example: What does a good death mean? Are you at peace with your life? What do you want at the end of your life? If your recovery is unlikely, do you want to be surrounded by medical equipment and well-intentioned people who are not your family? When your time is limited, how do you want to spend that time? The way you die matters a great deal to your family. 

"We choose our words and guide the discussion carefully. But we want people to understand that there is a choice. And at the end-of-life you can exercise that choice." 

A lot of the discussion in the facilitated group, even about death, is surprisingly light and warm.

"I remember a small group: we were sitting in small living room with an open fire. It was a winter's day and there were about 10 of us in the room. One of the women opened up about her husband, who has died recently - it was good to see that she felt comfortable enough to talk about it. She talked about her husband dying the way he wanted to, at home, and that one of her friends came over after the death and helped her to lay out her husband.

"And I thought, it is really great, to feel comfortable to talk about that. I thought that was a really good situation."

Catherine says that the discussion in the groups often turn to feelings and attitudes towards place of death, where a workable plan is also helpful. While many people say that they want to die at home, it's difficult when you're well to imagine the natural progress of any health condition and how it may affect others. It's easy to forget that simply getting older with no health problems in particular is also part of that picture.

"I remember one woman who opened up the conversation by talking about her mother, who had dementia and who wanted to die at home. The daughter was the sole carer and it got to the stage where some of the mother's behaviours were rather challenging. She'd get up at night and wander around the house and turn the gas on. And the daughter got so fearful that the house would blow up that she couldn't go to sleep without leaving all the windows open. She said that in the course of looking after her mother, she changed from being the daughter into being a physically and emotionally exhausted carer. She lost that daughter-mother relationship. She was the exhausted carer, and she said she started to resent it.

"There is a lot of pressure to be able to die at home. But it depends on so many things. I use the example sometimes of myself. I've got one daughter - my son lives interstate - and I'm very conscious of what I would be landing on her. And I tell her although my preference would be to die at home, if I needed to go into care to help her, then I would understand." 

Catherine says that discussions can often stir up strong emotions for people, especially people who have been recently bereaved.

"We always say, 'Look, if it has stirred anything up for you, please come and talk to us later. Don't go home with that knot in your stomach.' 

"But the feedback from the groups is very positive with people reporting that they are glad they came and took part in the discussion. We have feedback from over 4500 people. We've had people say, 'Look, I really wasn't going to come today but I'm glad I did.' 

"People say, 'Even though we've done an advance care directive, you've given us more to think about. We need to go and change a few things and review it.' Or they say, 'You've made me think about advance care planning in a different way - I've never thought about it in that way.'"