With funding from the National Health and Medical Research Council of Australia, we’ve been conducting research on the My Health Record. To understand more about one of the documents within the record, we recently reviewed the legal and ethical issues surrounding Advance Care Directives in Australia, and considered implications for storage in the My Health Record (see McCarthy et al., 2017).

There are many legal and ethical issues relating to Advance Care Planning and Advance Care Directives in Australia, and both doctors and patients navigate complex legal issues relating to legal capacity to make decisions, and either create or identify the validity of Advanced Care Directives. Advance Care Planning holds opportunities and benefits for those who engage with the process, and an Advance Care Directive gives individuals the chance to determine the care they will receive in the future, when they are no longer able to express those wishes.

Patients may be empowered by the opportunity to control their own care, and the Advance Care Directive can reduce the risk of receiving unwanted or burdensome medical procedures. The Advance Care Planning process may also reduce family conflict arising from different motivations or opinions among family members on appropriate medical care.

However, legal and ethical barriers exist that may limit implementation of Advance Care Directives.

”It is concerning that so few Australians are using the Advance Care Planning Document within My Health Record”

One of the key barriers identified in the literature to date is that people generally lack awareness and knowledge of the legal nature, purpose, and benefits of Advance Care Planning. This poor knowledge could affect people who would benefit from having an Advance Care Directive, as well as health professionals who are responsible for decisions relating to implementation of the Directive.

Poor knowledge and understanding of the law surrounding both the planning phase and the Directive itself may be improved through greater collaboration between healthcare practitioners, legal professionals, and patients. Such a collaboration would (a) help to ensure that an Advance Care Directive is written in a way that is legally binding where relevant, and that it is also clear for their doctor to interpret; and (b) potentially be of benefit in guiding the implementation of Directives.

Identified barriers to both Advance Care Planning and Advance Care Directives must be overcome to ensure that patients are able to document and store their preferences for future health care.

The My Health Record provides an accessible means of storing Advance Care Planning decisions and any Advance Care Directives so that these documents are accessible to healthcare providers when they are needed. This access is vital to ensure that Advance Care Directives are implemented as intended by the patients who make them.

Given the lack of other free storage options for these documents, it is concerning that so few Australians are using the Advance Care Planning Document within the My Health Record. Collaboration and cross-promotion between legal information websites and the My Health Record may improve awareness and uptake of this system.

Our research seeks to discover the views and experiences of patients with communication difficulties and their family members, direct support workers, legal professionals, and health professionals, including GPs, Practice Nurses, and Practice Managers, on using the My Health Record.

Recently, we completed several interviews with Australian lawyers in relation to their views on the My Health Record. Now we really want to find out the views of GPs within this research, in ways that are not too time consuming and that maintain confidentiality. With the system set to move to an Opt Out system it is really important that we discover the barriers to and facilitators for use of the My Health Record, and the views and experiences of GPs as key health professionals in the process.

GPs, Practice Nurses and Practice Managers who wish to participate confidentially in our research and share their views can complete a very short, ethically approved survey online, by going to https://www.surveymonkey.com/r/MyHRMedical

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Full reference of article:

McCarthy, S., Meredith, J., Bryant, L., & Hemsley, B. (2017). Legal and Ethical Issues Surrounding Advance Care Directives in Australia: Implications for the Advance Care Planning Document in the Australian My Health Record. Journal of Law and Medicine, 25(1), 136-149.