Putting it into words
The advance care planning process can help people to think about their treatment preferences and choices and express their hope for certain outcomes if their illness progresses.
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 shows how a simple discussion about advance care planning was a turning point for a woman who had not acknowledged until that point how ill she was, but who realised she could still determine future healthcare decisions for herself.
Alina* was in her 50s and had dealt with a serious and chronic illness for a long time, although she managed her illness very well. She had reached a stage where her doctors could offer no further active management of her disease. Kathryn was asked to meet with her to have a discussion about advance care planning.
"She asked me, 'What's that?' And I said, 'Well, we can talk about who might make your medical decisions if you are no longer able to make them, and what instructions and guidelines you might want to give that person,'" Kathryn says, recalling that Alina "was a bit upset and dubious about it." Kathryn offered to return the next day to talk more about advance care planning, and Alina agreed.
"Her husband, Keith, was with her when I returned the next morning. She started out by saying to me, 'I never realised how unwell I was.'"
Kathryn says that Alina had been told her doctors that they wouldn't use intubation or ventilation if her condition worsening. "She was quite angry, but then she started to recognise that the doctors had been trying to tell her how ill she was. They had said to her they were at the 'maximal level of their medical management.'
"She thought she was receiving the best treatment possible and doing very well. But she hadn't really understood what they meant. No staff had actually said, 'We are unable to cure your disease.' She hadn't realised that she had been on maximum treatment, and that now the focus needed to change to looking after her symptoms, such as pain and shortness of breath." For Alina, realising the actual situation was a relief in many ways.
The subsequent advance care planning discussion that Alina, Keith and Kathryn had helped to clarify Alina's situation, and she told Kathryn she was very grateful for the opportunity.
"Alina was really wonderful. She has been in control of her condition for a long time. She now lives with her condition rather than fighting it. She made some significant decisions about not wanting further active management, but realised she could still have control in managing her symptoms of pain, fatigue and reducing mobility."
Kathryn described advance care planning discussions as sometimes being a way of 'reframing home'.
"You can never take away hope, but you can reframe it. So initially a person with a serious illness is hoping for a cure. Then, if a cure is not a possibility, they hope for containment of the illness. And then, if that doesn't happen, they hope for the best symptom management they can get. And then eventually a person may be hoping for a peaceful death. So it is not about taking away hope, it's about changing the face of hope so that they can cope with that."
Advance Care Plans can assist people to express their hopes for different stages in their illness, and make these preferences clear to people, like Alina's husband, who act as their substitute decision-maker, to ensure that their preferences are met.
*Name has been changed.