This article was written with contributions by Joel Rhee and originally published on newsGP.
Only 14% of older Australians have an advance care directive (ACD), leaving the majority unprepared for end-of-life treatment decisions.
In fact, according to research and consultation led by Advance Care Planning Australia (ACPA), the completion of ACDs for preferences of care and/or to appoint a substitute decision-maker is not occurring as part of routine care planning.
The prevalence of ACDs in a person’s health record across sectors was 6% in general practice, 11% in hospitals, and 38% in residential aged care.
Ensuring people have choice and control over healthcare decisions, now and into the future, is an important component of quality aged care – it’s also why ACPA is seeking to partner with GPs to encourage patients to start advance care planning while they still have decision-making capacity.
Start the conversation
The first and most important step in advance care planning is to start the conversation.
Opportunities for conversation may come naturally, for instance after discharge from the hospital or when patients are newly diagnosed with a chronic or advanced illness.
Another useful strategy is routinising the conversation, by including it as part of an over-75s health assessment or a chronic disease management plan. Patients should be encouraged to continue the conversation with their loved ones and to also have the conversation with other health providers involved in their care.
Some patients may then want to outline their preferences and instructions for their future healthcare in an ACD. This document comes into effect when a person is no longer capable of making their own medical decisions, providing a sense of certainty, choice and control in the face of declining health.
ACDs are legally-binding when completed and signed by people with decision-making capacity.
For older people in residential aged care, 38% have an ACD, while 30% have an advance care plan completed by someone else (eg a family member or carer).
The majority of the plans completed by someone else include treatment-limiting instructions. However, these plans can only be used as guides, as there is no legal framework for these documents in Australia and doctors can be left confused about their legal status and whether they are legally binding.
Earlier planning is enormously beneficial to ensure documents are written by the individual, clearly expressing their own wishes.
Refer to National Advance Care Planning Support Service
GPs can contribute to turning those statistics around and help their patients by referring them to ACPA’s National Advance Care Planning Support Service. This service is part of an initiative funded by the Federal Government and delivered by those with expertise in advance care planning.
ACPA can help GPs across Australia by accepting referrals, supporting patients to understand advance care planning, and supporting the completion and advising about the storage of relevant forms according to the rules and regulations of each state and territory.
The support service can also help people to identify a substitute decision-maker, encourage discussion around values and preferences, and promote conversations with others. This allows GPs to focus on decision-making capacity assessments and witnessing of documents.
By referring patients, GPs can help them complete documents before they become too unwell, lose decision-making capacity or move into residential aged care.
According to Associate Professor Joel Rhee, Chair of RACGP Cancer and Palliative Care Specific Interests, advance care planning is not only increasingly recognised as a key component of end-of-life care, but also for people who are getting older and all those who may lose decision-making capacity in the future.
‘Those in primary healthcare, GPs and practice nurses, along with staff in residential aged care facilities and hospitals, all have a shared role in this area,’ he said.
Xanthe Sansome, the Program Director at ACPA, said it is important to remember that advance care planning ‘involves multiple conversations and people need time’ to consider their values and preferences.
‘ACPA’s National Advance Care Planning Support Service, led by highly experienced and trained volunteer facilitators, provides access to evidence-based information resources and the correct forms,’ she said.
By referring patients to ACPA’s Support Service, GPs can more easily make a difference in the future healthcare of their patients.
Once GPs refer patients to the service and the documentation has been prepared, patients can then return to their GP for document completion.
When referring patients, GPs must ensure their patients have given consent to be contacted by ACPA, have decision-making capacity, and have a basic understanding of the concept of advance care planning so they are open to a conversation with the Support Service team.
When to start the conversation?
Advance care planning conversations can be introduced through:
- usual assessments and care planning, such as the over-75 health assessment and chronic disease management planning
- opportunistically (e.g. follow-up consultations after a hospital admission).
Advance care planning is relevant for all adults but should be prioritised for those who:
- have an advanced chronic illness, life-limiting condition or new significant diagnosis
- are at a key point in their illness trajectory (eg planning or assessment for aged care services, or during transition to residential care)
- have declining ability to make their own decisions (eg a progressive cognitive impairment)
- in the view of a GP who knows them well, the GP would not be surprised if the patient was to die in the next 12 months (‘The Surprise Question’).
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