The key matters
Veronica Spillane is a volunteer with Advance Care Planning Australia (ACPA) at Austin Health in Melbourne. She is one of a group of highly qualified and experienced volunteer ambassadors who implement ACPA's Community Education Program. She is also involved in taking calls on the national ACPA telephone Advisory Service. The volunteers are supported by training, supervision and ongoing education. Veronica talks here about three broad types of issues people raise when thinking about Advance Care Plans.
'The most common questions we are asked are, "Who do I choose as my substitute decision-maker?" and "How do I raise this issue with my family?" Also, we like to encourage people to think about advance care planning as a values-based process rather than a series of decisions about specific medical interventions.'
Choosing a substitute decision-maker
"A lot of people wonder who is best to nominate as their substitute decision-maker', Veronica says. Sometimes the choice is obvious, but sometimes people have no-one to ask, or they don't want to choose the person who tradition might suggest as the more appropriate person, such as the eldest son.
"Someone might say, 'I don't have any family any more, and I don't know who to name as my substitute decision-maker'. One lady told us that she had nominated her financial counsellor as her substitute decision-maker. We understood that she didn't have a lot of choice, but this put her in a vulnerable position."
Sometimes people don't want this substitute decision-maker to be a family member, and ask if they can choose a friend (they can). Ideally, the family is aware of and accepting about the person chosen for the role.
"I recently spoke to a lovely chap who was in his 80s and thought it was about time he did some planning! He was living independently and had a number of adult children. He wanted to talk through who would be his substitute decision-maker. One of his children was a doctor, so he thought she would be a good choice, but she lived overseas. So we teased things out with him, pointing out that he could appoint the daughter, but if she was needed and she was overseas, then she'd be managing the situation on the phone. We talked about the option of an alternative substitute decision-maker and he decided he would think about this and talk some more with his family." Depending on the state or territory, more than one substitute decision-maker may be appointed.
"Many people call us about families where there is conflict, and we are able to offer some tips on navigating such situations," Veronica says.
Sometimes, people are concerned that their spouse or partner might have difficulty 'letting them go' and will be including to follow their own beliefs rather than those of the person who has nominated them. "This is a common concern. We can talk about the fact that it is common, which can help people to realise that is not just their situation, and we can also help them work through the options."
Raising the topic with the family
Death is not a topic often talked about, although Veronica points out that this is changing: 'death literacy' is improving and people are more able to talk openly about their concerns.
"Initiative such as Dying to Know and Death over Dinner (community-based initiatives that encourage people to open up and talk through their thoughts and fears concerning dying) have contributed to this, as have significant developments in public policy and legislation."
Yet in many families, the topic is still taboo, and sometimes older people feel blocked from talking about the issue by well-meaning family members.
"People often say, 'I tried to raise this with my family, but they stopped me saying, 'Oh Mum, don't be so morbid.'' There is an element of superstition: a feeling that if you talk about it, it might happen.
"So we can suggest ways in which they might open that conversation with their family. We can give them some printed information to share with the family.
"One of the things that we can contribute is a degree of comfort with talking about things to do with death and dying. This acts as a model for the people who talk to us and who don't have much exposure to those sorts of things. It's about trying to talk about death in a gentle and caring way and not in a denying way."
Talking about values
Veronica says ACPA encourages people to think about advance care planning as a process of considering and discussing their personal values. It's not about trying to imagine every possible medical event that could occur at the end of life, and what a person would want done in each event.
"It's not really a question of, 'Do I want to be resuscitated in particular situation?' If that was the case, your Advance Care Plan would be the size of the phone book! It's impossible to imagine every conceivable eventuality.
"Advance care planning is not about accounting for every situation; it's about informing the process and allowing people to understand what you would have wanted. Rather than saying that you do or don't want to be resuscitated in a given situation, you might say more broadly, for example. 'I don't want 'x' to happen if I have a low chance of survival or a very high change of being much more impaired that I am now.' What is important to you? Do you need to be able to think? Walk? Talk? Different people have different preferences around issues like this, and that's what the Advance Care Plan needs to reflect."
It's important to review and update your Advance Care Plan regularly, Veronica says.
"We encourage people to review their Advance Care Plan every couple of years and make sure it's still current, considering any changes in the family or changes in your health and wellbeing."