Respecting your values

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Sometimes people realise after completing their advance care directive that the person they've chosen to be their substitute decision-maker is not the right choice. The advance care planning process is flexible and allows people to revise the details of their advance care directive as needed.

Kathryn Whiteside is an Advance Care Planning Clinician at Austin Health in Melbourne. She has helped many individuals and their families work through the advance care planning process. The following case details how one man chose, and then changed, his substitute decisions-makers, to ensure that his values would be represented when needed.

Michael* had been dependent on his mother as his primary carer for a number of years. He was in his 50s with significant illnesses, including being wheelchair-bound and requiring PEG feeding. His circumstances changed dramatically when his mother developed dementia and needed to move into a residential aged care home. Michael initially appointed two of his sisters as his substitute decision-makers to replace his mother.

Kathryn had got to know Michael over some years through his hospital stays, and over many conversations had come to understand his values and concerns. One day he came into the hospital with a serious (and given his other illnesses, life-threatening) chest infection. During that admission, he realised that his sisters were not going to be his best choice as substitute decision-makers.

"He realised that his sisters didn't agree with his preference, which was that if he became really unwell and got to a point where he didn't recognise his family, he didn't want any further active treatment. He then had to think, 'If I can't have my sisters in this role, who can I have?'

"Because of his cultural background, he had to have someone who the family would respect. He chose a couple who had been friends of the family for 30 years. We set about doing the advance care planning document again - but then we realised that they regularly went overseas to visit their family, which would leave him with nobody here to represent him."

Michael thought through his options and chose one person from that couple and another family friend. Kathryn says the process Michael went through was a reminder that people don't always appoint the right people as their substitute decision-maker the first time.

"It was an interesting exercise in all the different things that one might go through to finally locate the right decision-maker."

Then, in a discussion facilitated by Kathryn with his new substitute decision-makers, Michael talked through the issues that most concerned him. They talked about what gave his life meaning: the sorts of things he valued. They also talked through what an unacceptable situation would be for Michael.

"We talked through a number of scenarios. For example, what would he want if he had a chest infection, which was quite possible. What would he want if he had a heart attack - this was also possible.

"We talked a little about what treatment he might or might not want, depending on the likely outcome." Michael clarified for his substitute decision-makers that any illness or treatment that took away his ability to communicate would be his 'line in the sand'.

"The thing that was very important to him was his ability to communicate with others. Communication was the only way he could train his carers but also express his needs and preferences. He was totally dependent on other people for all his daily care needs. If he lost his ability to speak and lost his ability to see, then he wouldn't be able to direct anyone else or organise any of his care. So this was very important to him."

These details were in his advance care directive, but the discussion facilitated by Kathryn explored his values and reasoning behind such decisions, meaning that his substitute decision-makers would have the confidence to make suitable decisions on behalf if needed.

*Name has been changed.

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