Facilities encouraged to join study that ‘leads to chain reaction of interest and discussion’

All aged care facilities should take part in a pioneering national study of advance care directives among seniors in Australia, writes Megan Corlis, director of research and development at Helping Hand Aged Care.

Last year, I sat on the advisory committee for Advance Care Planning Australia’s pilot National Advance Care Directive (ACD) Prevalence Study. I understood the need for better baseline data about the proportion of people who have recorded their future treatment preferences with their health care service.

Independently of my involvement, our North Adelaide facility applied to take part in the study.

The site manager nominated to participate because they were unsure about their performance around the availability of advance care directives in residents’ health records and the study provided an opportunity to set a benchmark.

Advance care planning and ACDs are important in the aged care sector for several reasons.

First and foremost is for our residents. The concept of reaching the end of life and making decisions about health care is quite complex. Yet many residents have the ability to make decisions and have strong feelings about how and where they want to spend their last days.

They are clear about the interventions they would or would not want, their final stages of care, the place they want to die and who should be with them at the end.

Next, it is difficult for loved ones to make objective decisions about a person’s care or life-prolonging measures during a sudden health emergency or deterioration when they are emotional and upset.

In some circumstances, intervention may extend life but without quality, or prolong the dying process with potentially burdensome and invasive treatment. Yet given the choice, the older person may have opted against that course of action.

Additionally, the average age of our residents has increased over the past 10 years to over 85. With increased complexity related to chronic health conditions and loss of decision-making capacity due to dementia, we would prefer that new people entering our facilities come with an ACD or else make one as soon as possible and before a health emergency.

Having residents’ preferences written down, stored and easily accessible to healthcare providers increases the chance that their preferences will be known and followed.

What’s involved?

Our research and development team at head office oversaw the research at Helping Hand to ensure the facility and staff were prepared. The audit work at the North Adelaide facility was co-led by the site manager, who is a registered nurse with a keen interest in advance care planning, and other staff.

They worked together on coordinating the audit and pulling together the information required, while engaging clinical governance colleagues. They also gave updates on the project at the weekly nurses’ meeting.

The audit was an intensive but short activity that was completed within several days in our setting. One person collected the data, but they had to review both hard copy and scanned electronic files. If you had more people on the task and predominantly electronic records, it would be quicker.

When our site report came in, we distributed it to all staff and sites. We escalated the findings to an organisational level to share learnings that were relevant to everyone.

The benefits

Taking part in the ACD Prevalence Study was worth the work involved. One of the important aspects was obtaining baseline data. Aged care tends not to run off objective data but this project provided genuine evidence on the number, type and quality of ACDs at our site.

We also received a report that benchmarked our performance against that of other services nationally.

The evidence is now a base for our continuous improvement activity. For example, as a direct result of our learnings from the study and the report, we have a proposal for a project to roll out advance care planning and ACD documentation more formally across the organisation.

The exercise also helped us to think through the complexities relating to some residents – such as those with advanced dementia – who require a supported decision-making approach.

Participating in the study also increased awareness of advance care planning and ACDs among staff across sites. Whenever something a bit different happens at a facility, it permeates through the organisation. It leads to a chain reaction of interest and discussion and the focus on that area naturally improves.

For people who are considering involving their facility in this year’s study, I suggest appointing a key project contact to manage the administration requirements and ensuring everything is well prepared.

Choose project members with a passion for or a focus on advance care planning because they are the ones who will champion the continuous improvement activities based on the report.

For the many benefits gained from participating in the prevalence study, Helping Hand is taking part again this year and we are actively promoting the study across our eight residential sites.

I’m keen to use the project as a vehicle to raise awareness of the issue and the value of completing ACDs, not only for residents, but for their families and our employees.

Applications for the National Advance Care Directive Prevalence Study 2018 are open on ACPA’s website.

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