What are your goals?
A 'goal of care' as stated in an Advance Care Plan may be quality of life at the end of life, rather than wishing for life to be prolonged at any cost.
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. The following case shows how an Advance Care Plan can help a person to say 'no' to an unwanted end-of-life procedure, even when they cannot speak themselves.
While it's an unusual situation, Diane offers this story as an example of how a written Advance Care Plan can support and advocate for patients, which often means just reminding people that this patient has an Advance Care Plan and this is what is says.
"There have been a few situations where I've been involved in advocating for patients, which often means just reminding people that this patient has an Advance Care Plan and this is what it says."
Diane recalls receiving a call at the hospital one day to come to the room of Julian*, a patient who she had previously helped to prepare an Advance Care Plan. Julian had been very sick for a long time, and his situation had suddenly become dire, probably irreversibly so. He was semi-conscious, unable to communicate and had 'acute abdomen': acute abdominal pain that needed investigating.
"By the time I got there, there are was an intensive care consultant in the room and two surgeons. They'd cleared out the room." The specialists were planning the next steps in Julian's treatment - an ultrasound to be followed by emergency surgery. It was a dramatic measure to propose for someone in very frail health.
No one had been able to contact Julian's wife. She was Julian's substitute decision-maker and Julian had insisted that only his wife be involved in making decisions, not their children.
"So they were trying to get hold of his wife, but the surgeon was saying, 'We've got to take him to theatre.' The surgeon was getting quite insistent about it."
Yet the surgeon acknowledged that Julian's chances of surviving the surgery were thin. Diane found herself in the role of Julian's advocate, by virtue of the fact that she had helped him think through his preferences for his Advance Care Plan and had had extensive discussions with him. She felt certain that he would not want surgery to proceed with limited chance of a good outcome.
"So I said, 'Look, he has an Advance Care Plan. Are you aware of that?' And the intensive care consultant said they were aware of it, but 'It doesn't say anything about not wanting to go in for surgery.'"
Diane reminded them that an Advance Care Plan doesn't need to cover every conceivable treatment. Instead, the plan spoke strongly of his general goals of care. He said that if he became unable to communicate with his family, play with his grandchildren or see them grow up, he wanted his life to end peacefully.
A kidney specialist was called to give his opinion, and he recommended starting palliation rather than the proposed surgery. This was agreed, and Julian was taken to a single ward and made as comfortable as possible with palliative care. His wife came in not long afterwards and confirmed that the right decision had been made.
Without an Advance Care Plan documented and preserved, Julian's outcome may have been different. Diane says that the increasing focus on patient-centred care makes the above scenario less likely than it once was, but emphasises that Advance Care Plans have been an important part of the development of patient-centred care.
"I think Advance Care Plans have encouraged doctors to accept patients' decisions far more readily than they used to."
The story is also a reminder that it is important your Advance Care Plan is stored with your substitute decision-maker, hospital, GP, specialist and/or in MyHealthRecord.gov.au.
*Name has been changed.