Advance care plans on My Health Record ‘a step in the right direction’

One of the challenges of advance care planning is ensuring that an up-to-date copy of relevant documents, such as advance care directives, are accessible to the treating doctors.
 
This is according to Associate Professor Joel Rhee, Chair of RACGP Specific Interests Cancer and Palliative Care. But better linkage with My Health Record could be a solution.
 
‘Advance care planning documents placed in the My Health Record will improve [patients’] accessibility to acute care clinicians and other health professionals at the time of need when important clinical decisions need to be made,’ he told newsGP.
 
‘Enabling patients to personally upload these documents into My Health Record has been a step in the right direction.’
 
To mark National Advance Care Planning Week (22–26 March), the Australian Digital Health Agency (ADHA) has released a new set of national guidelines to assist healthcare providers in supporting patients wishing to add advance care planning documents to their My Health Record.

The guidelines, developed as part of the National Goals of Care Collaborative led by the ADHA and the Western Australian Department of Health (DoH), provide guidance about how to store and access documents related to advance care planning, and goals of care discussions that occur in the context of end-of-life care.
 
Dr Simon Towler is the clinical lead for end-of-life care at the WA DoH and Chair of ADHA’s National Goals of Care Steering Committee. He told newsGP that ensuring this information is available and accessible is both ‘critical and respectful’.
 
‘It underpins best practice and is in line with the ADHA’s commitment to enhanced models of care,’ Dr Towler said.
 
‘As many Australians now have a My Health Record, and health professionals are increasingly accessing [these] when providing care, there is a much greater opportunity to ensure that a person’s considered wishes and preferences for care and their life choices can be recognised and taken into account.’

He says the guidelines also have the potential to ‘greatly assist’ patients and healthcare professionals to engage in a well-informed, shared decision-making process.
 
‘It is respectful, it is best practice and it should be the standard for all healthcare,’ Dr Towler said.
 
Although linking advance care plans with My Health Record can benefit some patients, Associate Professor Rhee said the same cannot be said for those who are less familiar with technology and the internet.
 
‘[But] the [new ADHA] guidelines may help to address this gap by enabling GPs to assist their patients by uploading advance care planning documents on their behalf,’ he said.

‘Advance care planning documents placed in the My Health Record … may also help to prevent situations where everyone is scrambling to find the latest copy of the relevant documents which might be stuck to the patient’s fridge, or in their safe, or in their lawyer’s office, which is closed for the weekend.’
 
To protect patient privacy, My Health Record has created a discrete, easily identifiable platform to store and view the documents, which can be accessed by the patient and their healthcare providers regardless of location.
 
This is particularly important for patients who receive healthcare in multiple settings and practices, use both public and private health services, and for those who travel regularly.
 
The platform has been endorsed by the National framework for advance care planning, Advance Care Planning Australia and Palliative Care Australia, who all recommend use of My Health Record to store documents related to advance care planning and goals of care discussions that occur in the context of end-of-life care.
 
But Associate Professor Rhee says the benefits can only be realised if every part of the system works.
 
‘This means seamless integration of hospital and practice-based electronic medical record systems with the advance care planning functionality of the My Health Record system,’ he said.
 
‘[It includes] the patients uploading the documents, or GPs uploading them on behalf of the patients – if this functionality is available – and acute care clinicians checking My Health Record for a copy of relevant documents.’
 
My Health Record is also not the only source of advance care planning information, rather one possible storage option.


Associate Professor Joel Rhee says the most important aspect of advance care planning is having the discussion itself.

The ADHA guidelines state that a health professional ‘can upload a person’s advance care planning documents or goals of care documents related to end-of-life care to a person’s My Health Record if instructed by the person’. This however, requires the clinical software used by the health service to be configured to support this functionality.
 
Associate Professor Rhee recommends practices check with their software provider if unsure.
 
‘Hopefully the vendors of common GP clinical software will implement the functionality to enable GPs to assist their patients by uploading advance care planning documents on their behalf,’ he said.
 
An ADHA spokesperson told newsGP the agency currently has limited visibility of when software providers will implement the enhancements, but that it is ‘on their radar’.
 
‘This is important work. It will take time and commitment to ensure the process is seamless and supports patients well,’ Dr Towler said.
 
‘I am optimistic that the work between the ADHA and the primary care information technology providers will underpin this work.
 
‘We absolutely recognise the demands upon GPs and will be seeking to ensure that these processes can be streamlined as much as possible.’
 
Administration and functionality aside, Associate Professor Rhee has consistently advocated that the most important aspect of advance care planning is having the discussion.
 
‘What are the patient’s goals of care, and their preferences?’ he said.
 
‘What is the level of understanding of the patient about their own health and prognosis? Are [the] patient’s goals of care realistic? What can be done to ensure that future healthcare will reflect the patient’s goals of care and preferences?
 
‘Advance care planning is also an important opportunity to discuss whether the patient has any healthcare needs that are not being met. [There are] a number of excellent resources … developed specifically for Australian general practices.’
 
The RACGP’s position statement on advance care planning supports inclusion into routine general practice, while its Silver Book provides practical approaches to advance care planning in the clinical setting.
 
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