‘Listen, engage and be involved’: The future of advance care planning

Community engagement and understanding could be the path that leads to effective advance care planning in Australia as a push to make the process more person-centred gains traction.

Roughly 30% of older Australians have some form of advance care planning documentation in place, indicating that more than two-thirds are forgoing the chance to formalise their preferences and wishes for end-of-life care. 

Less than 15% of those documents are also legally binding, meaning even well-intentioned efforts could result in an older person not receiving the kind of care they want.

These are just some concerns about advance care planning conversations in Australia. Discussions around the loss of capacity – when capacity should or should not be assumed – and the fact there is no advance care plan recognised by all states and territories are also recurring. 

Advance Care Planning Australia Director and Palliative Care Doctor Greg Parker told Hello Leaders that one of the first steps to strengthening advance care planning is moving away from the medicalises approach.

“What’s really become front and centre is that we need to bring it back into a humanist approach and move away from the completely medicalised approach. We need the ability to sit down, listen, engage and be involved with an individual’s journey. Capture the nuances and the essence of their needs,” he explained.

“The pendulum swing, not only in the advance care planning space but end of life care overall, let’s bring it back to the community. Let’s listen to what people want and what their will and preferences are. 

“Then we can look at how we support people downstream. It does require investment in social structure and support for our communities. Not necessarily a monetary investment, but just a true investment in terms of recognising that this is as important as every other aspect of healthcare.”

Dr Parker previously said the incoming rights-based Aged Care Act will go a long way to reinforcing a humanist approach to advance care planning and end-of-life care. However, he explained that it’s also about education and awareness within the community. 

“If anything, it starts with recognising that these discussions are part of life rather than waiting for a crisis to happen. Let’s find ways that will engage our communities to have conversations and think about advance care planning.”

Complex change takes time

One of the most challenging elements of advance care planning is the fact there’s no uniform plan or directive recognised by all states and territories. Therefore, moving state – or even suffering a life-threatening injury while in another state – could make an advance care plan legally irrelevant. 

Dr Parker said there should be a move toward establishing consistent documentation that outlines someone’s medical and personal end-of-life wishes but it cannot happen overnight. 

“We need to recognise that it’s a complex citation and that will take time to change. It’s important to work with what we have at this stage,” he explained. 

“It’s about how we use what we have in the current context to support individuals and their families. I think we all have an obligation, from a health professional perspective, to understand what our local processes and legislation are.”

As for capacity, he wants to see change that results in healthcare and legal professionals starting at a point where capacity is assumed. He does not want a blanket approach.

“Even if there are points where a person’s cognition changes, do not lose sight of the fact that it is very much point and decision-dependent. We need to have the context of engaging and having a conversation, rather than making assumptions and stereotypically labelling people because you have A, B, C or D conditions,” Dr Parker said.

With residential aged care being the biggest predictor for having advance care planning documentation – 38% of residents have one – the push for early education is viewed as a critical step in raising awareness.

Many vocal supporters of advance care plans want early education that reinforces the fact these documents can and should be updated regularly rather than a set and forget. 

There are also calls for more education in aged care and healthcare settings. This is one of the focal points Dr Parker said Advance Care Planning Australia is committed to. 

“We want to have an informed community that understands and has awareness of the benefits of advance care planning. The community should also recognise that it is voluntary, iterative, complex and takes time,” he shared.

“The second part is to support health professionals and aged care workers to be educated, informed and skilled in terms of being able to approach the conversation. I don’t think we should be scared of starting conversations, but it’s how we then take it to the next level. 

“At a system level, it’s to ensure there are enabled systems to support the interaction between the individual, family, entrusted substitute decision-makers and health professionals who know them best, to be able to foster the conversation. 

“The story is as important as the formalities and I think that’s what we need to make sure we don’t lose sight of.”