It's not all up to you
Advance care plans can greatly reduce the burden on family members when a crucial decision, such as whether or not to prolong a particular treatment, is needed.
Diane Chaffers 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. Diane describes the following case to demonstrate how an Advance Care Plan can be tremendously reassuring for families facing important but painful decisions.
June*, aged 70, was having dialysis and was also diabetic. She knew that her health could soon deteriorate significantly, and told Diane that she didn't ever want to go into a residential aged care home. If an aged care home became inevitable, she said she would prefer to stop the dialysis.
"Dialysis patients are in the unique position where they can actually choose to cease treatment, should their symptoms become overwhelming or their quality of life dramatically diminishes," Diane says. A person dependent on kidney dialysis will usually die peacefully within a few days of dialysis being stopped.
June wanted to write an Advance Care Plan. Diane helped her to explore her beliefs, values and preferences and prepare a written plan. June's husband, James, became her medical enduring power of attorney.
Diane saw June regularly at the hospital. Over the next five years, June had some strokes, and although she remained living at home, cared for by James, she gradually became wheelchair-bound, her speech began to slur, and her health deteriorated in key ways.
James had a heart condition and it was becoming harder for him to care for June at home. One day June fell at home and was badly injured. She was admitted to hospital: she was in a lot of pain, which was hard to control. Given her condition, injury and need for nursing care, it became obvious that once the pain settled, she would have to go into a residential aged care home, which she had expressly state she did not want to do.
"She didn't want to go into an aged care home. Her mental condition started to deteriorate and her mental competency was brought into question. She started to refuse dialysis," Diane recalls.
James, June's husband, was staying at the hospital with June but his behaviour was worrying the nursing staff. He was fussing around his wife - trying to get her out of bed and into a chair - and the nurses were worried about her safety.
"I had a good relationship with him, so I felt I was able to call him into a room, sit him down, and ask him, 'What's going through your mind?'" James broke down. He knew that he couldn't take June home now that she was refusing dialysis. While he acknowledged to Diane that the decision to cease dialysis needed to be made, he couldn't bring himself to make it.
"He felt powerless. He couldn't make that decision, even though he had medical enduring power of attorney. He said, 'I've got five adult children, what will they think?'
"At that point, I said, 'Well, you don't have to make that decision. Your wife did an Advance Care Plan, do you remember?' And he said, 'I remember, but I didn't really pay much attention to it at the time.'
"So I said, 'Okay, how about if I go and make a copy, and let's have a look at it.'"
James read the Advance Care Plan his wife had written - it told him what he needed to know. Diane made copies for James and June's children and the family met and agreed that June's wishes were clear. The dialysis was stopped and palliative care began. June died three days later.
Diane says, "It was the Advance Care Plan that really helped the family. They understood that the decision had already been made by her."
An Advance Care Plan can be a tremendous relief, Diane says, taking the weight of a very difficult decision off a grieving family. "It removes that burden of responsibility. That's what we want people to understand. It takes the burden of responsibility of decision-making off the family."
*Name has been changes.