Pandemic brings advance care planning into focus

Broaching the topic of end-of-life care preferences is uncomfortable, but not to be avoided.

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Creating your own advance care directive could help open up discussions with patients about their end-of-life preferences, an important first step in ensuring their wishes are respected.

This week is National Advance Care Planning Week, aimed at encouraging people to start a difficult conversation with family, friends and healthcare workers.

Figures from My Health Record show just one in six Australians has an advance care directive, despite the fact that almost half of the population will be unable to make their own end-of-life decisions.

The spread of COVID-19 throughout aged care facilities has brought a sense of urgency to older Australians, according to palliative care clinician and former GP Dr Will Cairns.

“The pandemic reminded people that you can’t be sure the circumstances of your illness will allow you to have your choices expressed, and you need to document [your wishes] while you’re well enough to voice them,” he told The Medical Republic.

“When you get too sick, have a stroke, or something like that, you’ve lost the opportunity to have an influence on your own care.”

This reminder highlighted the way different circumstances can change preferences and wishes, according to Dr Cairns.

“Many elderly people started to think about what they would want in the event of a pandemic coming to their residential aged care facility or to themselves, and what their wishes might be in that context,” he said.

Preferences can also shift dramatically over time; the prospect of using a wheelchair for mobility may be unacceptable to a younger person but be considered a reasonable adaptation to make once they are older, said Dr Cairns.

Similarly, the goals and values of the patient – and the context in which they were expressed – should be kept in mind when following advance care directives.

Dr Cairns described one situation where his patient, an elderly woman with a do not resuscitate order, suffered a cardiac arrest in hospital, but her heart started up again within 30 seconds.

Her family was left with the choice of putting in a pacemaker or not, and ultimately decided in favour of intervention.

“They felt that what they didn’t want was for her to have a fall if her heart stopped temporarily, and break her hip or bang her head – that would be worse,” said Dr Cairns.

“So they decided that they would put a pacemaker in, because that would allow her to reduce her risk of being disabled but not dead.”

Dr Cairns believes GPs are well-placed to monitor these changes and subtleties, being one of the few specialties where long-term care is the norm.

“In general practice, you have this long, personal relationship [with patients] and your role is to translate the realities of our biology and our finite life changes into a way for people to lead their lives,” Dr Cairns told TMR.

“Part of that is planning and preparing for the bad things that might happen.”

While opening those conversations with patients can be difficult at best, Dr Cairns encouraged GPs to familiarise themselves with the advance care planning system in their state.

“One way of doing it is to do your own advance care plan – although no one else is going to be exactly the same as you, it helps you to think about how you’re going to [start that process with patients],” he said.