CASE STUDY: The things that matter

The things that matter

Advance care planning community education sessions and facilitated discussions are a great way to prompt individuals to think about advance care planning and the things they need to consider when undertaking their planning. 

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 with the ACPA Advisory Service. The program visits community groups throughout the broader north-eastern Melbourne metropolitan area to provide education and stimulate discussion about advance care planning. Catherine talks here about how these sessions can prompt and assist people to prepare their own Advance Care Plans. 

Catherine explains that the volunteer program provides basic advance care planning information to groups like Probus, U3A, community houses, learning centres, retirement villages, seniors groups and chronic illness groups, usually to people aged 55+. The groups may be as small as 10 people or as large as 100. She says the program has changed over the five years it has been running. 

"In the beginning, we started out with a very static, didactic approach, with a PowerPoint presentation that we didn't deviate from. We've changed to a more personal, values-laden approach. We still maintain the core information, but we now use a lot of examples from our personal experience to illustrate points." 

She explains that the change is to encourage people to think about how it is one thing, but these more down-to-earth discussions help people to think, "How can I go about this myself?"

The groups help people to clarify their values and attitudes, prior to having conversations with their family about the things that matter to them. 

"It's a great way to get people to appreciate that we are all different. They start sharing stories. One of them might relate something from their life, which then encourages other to open up." 

Catherine says that, over time, the group facilitators have been able to identify advance care planning issues about which people are often confused, such as powers of attorney and their function. 

The education sessions allow for a general explanation of matters such as advance care directives and substitute decision-makers. Catherine says she encourages people to think carefully about their choice of substitute decision-maker. 

"You need to choose very carefully who you want to be your substitute decision-maker. Your healthcare decision-maker doesn't have to be a family member, such as your spouse. A lot of people choose someone who is not immediate family. They might be too emotionally engaged at the time, and not able to think clearly. You need to put a little bit of thought into who is the best person for that role." 

Ideally, Catherine says, the substitute decision-maker is the spokesperson for decision-making. Your healthcare decision-maker doesn't have to be a family member, such as your spouse. A lot of people choose someone who is not immediate family. They might be too emotionally engaged at the time, and not able to think clearly. You need to put a little bit of thought into who is the best person for that role.

"There was an article in the newspaper recently, which quoted an intensive care doctor saying something like: 'If you haven't had this discussion, then meeting me in intensive care can be your worst nightmare'. 

"It's not a matter of pinpointing which treatments you will or won't have, it's about talking about what you value and what you considered when decisions need to be made about your care if you can't make those decisions for yourself. It is very difficult for a lot of people to get into the right head space for that, particularly the demographic we talk to, who are people who are well and living independently in the community. They can't imagine themselves ever being in a space where they will be too unwell to talk to their doctors about the type of care they want. That's why these type of exercises are so valuable. If it is important to you, then talk about it with the family."

She says there are frequently also questions about medicine and negotiating healthcare choices. 

"For example, a lot of people don't know that they can refuse any treatment at any time. They're quite surprised by that. 

"The explosion of medical technology in our hospitals is allowing us to live longer because of improved treatments and so on, but it doesn't occur to people that this can create a particular problem that we need to respond to at the end of life. Many people are still in the frame of mind that medicine can do anything. It can, up to a point, but beyond that, it can't. We need to talk to our family about the type of care we'd prefer to receive: from very technology-driven aggressive-type care to something in between to palliative care. It's important that our family know." 

Catherine says there is also a lot of confusion about what palliative care (often called comfort care) is - many people think it's only for the very end of life. 

"Modern palliative care has really progressed as a specialty. We don't talk specifically about palliative care in the group, but when it comes up, we find that people who have actually experienced it, for example as the spouse of someone who's been treated with palliative care, found it to be overwhelmingly a positive experience."

Catherine says the discussions can cover some sensitive topics, but the facilitators are very aware of the language they use and are careful to guide the discussions carefully and thoughtfully.

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