Quality conversations fix advance care planning misinterpretations

Evolution has been critical for South Australian aged care provider Barossa Village with the regional operator embracing new approaches to advance care planning for its residents over the last 15 years. 

Its first major foray into this space occurred in 2009 when the organisation adopted the Respecting Patient Choices Program, an initiative from Austin Health Clinical School of Nursing that was favoured by SA Health.

At that stage, it was a true momentum shift with the nurse-led initiative providing a detailed suite of changes for a successful advance care planning program. 

However, as Barossa Village General Manager Matt Kowald explained at the Advance Care Planning Australia National Symposium in Adelaide, it wasn’t always smooth sailing due to diverse viewpoints.

“We had lots well meaning people writing aged care directives and there were often comments like ‘In line with my Christian wishes’ which to me is difficult to interpret. An advance care plan requires some detail and needs a person to have that medical knowledge around the dying process,” he told Hello Leaders.

“I think that that was one of our early learnings. People wanted to know what happens when you die.”

This resulted in Barossa Village creating and sharing its own information covering themes around death and dying. The booklet now includes insights on best practice recommendations.

“People can hold onto it and know what each stage looks like, what to expect and decide what they do or do not want. It is a conversation starter,” he added.

Enabling ownership

Change has also occurred in their approach to advance care planning. In 2019, Barossa Village participated in the End of Life Directions for Aged Care (ELDAC) Working Together Program. This helped them learn more about best practices for end-of-life care and where improvements could be made in workforce and organisational knowledge.

The ELDAC program also saw Barossa Village host a Barossa Palliative Care Symposium. The event brought together the region’s end-of-life specialists, general practitioners and other service providers to encourage networking and recognise how it could enhance palliative and end-of-life experiences.

This resulted in reappointing a palliative care link nurse and strengthened partnerships with local GP Dr Christine Hoff from Angaston Medical Practice who is passionate about her clients and ownership over all facets of end-of-life care.

“I wouldn’t trade my palliative care link nurse in at all. She helps keep the momentum. When we’ve had other programs, such as Respecting Patient Choices, it lost momentum because no one owned it. You need to find that passionate individual inside your organisation, grab hold of them and allow them to make that their own,” Mr Kowald said.

While this evolution was not without its challenges, he added that it was essential to form new relationships to ensure the organisation could effectively play its role in the end-of-life care journey.

“It’s complicated because an aged care provider can’t write somebody’s advanced care directives: there is an inherent conflict of interest. What we can do is help get the decision-makers in the room and allow them to have a conversation with a medical professional,” he said.

“When talking about advanced care planning, we’re [aged care providers] in the implementing part. We’re not at the writing it up part. Hopefully, all of that work has been done in the community beforehand. 

“But more often than not it hasn’t happened and we still have lots of challenges to try and get people to understand what the end-of-life care pathway would look like and what care planning and conversations about that could look like.”

A palliative care module has also been integrated into staff orientation while its Leecare software systems include a Palliative Care Pathway and assessment tools for daily use by staff to help implement and monitor palliative care.

Communication and capacity

Roughly 90% of Barossa Village residents have an advance care plan (referred to as an Advance Care Directive in SA), with the remainder having another form of legal direction such as an enduring power of attorney or enduring guardianship document. 

Additionally, 85% of residents have a Seven-step Pathway outlining the end-of-life clinical care plan that would come into effect if required. Mr Kowald said the involvement of a clinical pharmacist has benefited here. 

These tools and support services are not just assisting at the very end stage of life. Mr Kowald added that they can now better recognise deterioration sooner.

“I don’t think aged care is given enough credit in that space because it has to be very intuitive. But we need to be tuned in to the people we’re looking after a long way out,” he shared.

“It has been important for us to identify early when people are deteriorating so we can start moving people towards their end-of-life care and start honouring some of those wishes.”

Meanwhile, when talking about advance care planning, conversations around capacity are unavoidable and unfortunately for many people living with dementia, the legal view is that a dementia diagnosis often means their capacity is lost. 

This is why early and ongoing conversations related to advance care planning are essential.

Roughly 80% of Barossa Village residents live with dementia, yet Mr Kowald is confident they can make decisions for themselves. For him, it’s about enabling choice and having conversations in a way the person can understand so that they can understand the impact of those decisions.

“Legal capacity is a very interesting topic and one that is jurisdictional and will depend on the doctors involved as well. We will assess someone, not that we can determine whether someone has capacity or not, but we are very happy to have a conversation with someone and understand their wishes,” he said.

“It doesn’t matter if they’ve got dementia; if they say they want something or they don’t want something then we should take that on balance and recognise that if someone said they wanted this to happen in 2022 it doesn’t mean they want it in 2024.

“It is about person-centred care. It’s about making people comfortable in the environment and making sure that person is receiving the care they need at that point in time.”