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Dr Matthew Grant
10 April 2019

Dr Matthew Grant

"Have you ever written down what you would want if you were very unwell?" I asked Colin, a man in his 70s who has end-stage lung disease.

"Oh yeah, I think I did that with my daughter – an advance care plan? We signed it off with our GP," he replied.

"That's great. Do you happen to have it with you?" I asked, pleasantly encouraged by Colin's forward planning.

"Hmmm, I'm not sure. It might be in the filing cabinet at home, or maybe with my daughter."

I encounter this sort of scenario far too often. Advance care planning is challenging on many fronts. It is time-consuming, often difficult to talk about, and healthcare professionals may find it a confronting conversation to initiate. However, it is worth the effort. It can translate to better care for the individual and their family, and health professionals can tailor care according to the patient's wishes.

It is particularly exasperating to meet people like Colin who have gone to the effort of discussing their wishes and writing them down, yet they remain inaccessible. In an emergency, Colin could be taken to any number of public or private hospitals, visited by locums and community nurses, and assessed by ambulance officers. We need to get the Advance Care Plan (and information about who is the advance care custodian) to the point of care where it is needed. There is no central repository for this information, and even if a few services have access to these documents, they can still easily fall between the cracks.

In Victoria, the recently revised Medical Treatment Act 2016 increases the need for such a central repository. It requires medical practitioners to make reasonable attempts to identify whether a patient without capacity has an advance care plan or directive, or medical decision-maker. How is the doctor in the emergency department to know that Colin has his advance care plan sitting in his filing cabinet at home?

My Health Record enables this information to be contained in the one place.

At present the system is still evolving. With more health practitioners and patients accessing the system over the coming years, it will offer the opportunity to have all these documents in one place, available at the time of emergency.

Presently, there are still some barriers to My Health Record acting as this central repository. The foremost is engagement, with few individuals having uploaded their advanced care plans onto the system.

The more people who do this, the more health professionals will know to access the system for this purpose. Advance care plans at this stage are required to be uploaded by the individual, not their doctor. Ambulance officers are at the forefront of emergency response and need access to these documents. I look forward to a time when they can access the system.

My hope is that in five years when I receive phone calls from community nurses or ambulance officers, we know what the patient would want in these circumstances. Currently, so much of what we do is guess work. The most important first step is people talking with their family, friends and health professionals about what they want, and writing it down in an advance care plan or directive.

These plans are useless unless they are accessible. My Health Record offers this potential.

Dr Matthew Grant is a Melbourne-based palliative medicine physician with appointments at several Victorian tertiary hospitals. He is also a research fellow at the VCCC Palliative Medicine Research Group and sits on advisory boards and working groups across palliative medicine and primary care. He originally trained as a GP and is focused on examining systems of care that improve coordination between specialist and primary providers. Dr Grant is also a Clinical Reference Lead for the Australian Digital Health Agency.