Making decisions is something we all do every day, often without much thought. We make breakfast, pick an outfit for the day, take medications, respond to mail, and tackle decisions as they arise in our lives. This is a basic human right and one that sometimes we may take for granted.
So, what happens if we have an illness or disability that impacts our ability to make some decisions?
Even when a person requires a higher level of support with decision making, they should be supported to exercise their own decision making to the greatest extent possible. The principles of the NSW Guardianship Act 1987 aim to promote the independence and choices of the person at the same time as ensuring their care and protection, so a guardian (substitute decision maker) is a last resort only to be used when necessary. Ideally, guardians should have a deep knowledge of the person, including their needs, will and preferences as their role is to stand in the shoes of the person and try to make the decision that they would have made themselves if they were able to.
We spoke with Bernard and his wife Helen about their experiences acting as a private guardian for a close family friend. Their friend experienced some difficulties with their health and living situation, and after a hospital admission, it became clear that they needed some support to leave hospital and to live safely. A guardianship hearing was arranged after an application was submitted by the treating healthcare team, and Bernard and Helen attended as long-standing friends. During the tribunal hearing, Bernard was suggested as a possible person who could be appointed with a guardianship role. This was not a role that he sought, or anticipated, but when discussing the supports his friend would need, Bernard was the natural choice to become a guardian.
Following the hearing, planning meetings were held to discuss his friend’s discharge from hospital and what steps needed to be taken to ensure his ongoing welfare. Bernard soon realised that being appointed as a guardian allowed him to join those important meetings to advocate on behalf of his friend and to ensure that his will and preferences were at the forefront when any decisions were being made.
“Although I initially didn’t anticipate taking on a guardian role, once I was appointed, it allowed me to be a better friend. Being a guardian provided me with access to all the meetings where important decisions were being made, and as my friend’s advocate and knowing them so well, I could ensure that the decisions were in their best interest. It provided me with joy to see the progress and positive changes that this led to within my friend’s life” – Bernard: advocate, guardian, and close friend.
Bernard chose to only accept the appointment as a guardian for the advocacy area of substitute decision making, with the Public Guardian providing support for other areas of decision making such as accommodation and services. Bernard chose to keep this distinct separation of decision making as he was conscious that he did not want his role as a guardian to impact his relationship with his friend and to change the dynamic of their friendship.
As Bernard navigated this new space of guardianship, he became aware of other types of decision making such as Person Responsible. The Person Responsible is a hierarchy of responsibility for when someone needs medical or dental care but are not able to fully consent to the treatments themselves. This hierarchy guides health professionals when making decisions and allows someone’s support network to advocate and make health decisions on their behalf if needed.
Acting as a private guardian has not come without its challenges, however. Navigating legal processes, tribunals and multiple agencies to advocate for a represented person can be challenging, even with consent and authorisation to act as a guardian. Bernard highlighted the importance of clear information about the rights and responsibilities of guardians and shared the need for relevant resources and support so that guardians can implement their role fully. Bernard added that he found it essential to be able to gain access to important documents such as medical reports to effectively act as a substitute decision maker.
Bernard also faced challenges in balancing his role as a friend and a substitute decision maker for someone who had previously lived independently with minimal support services in place. Bernard wanted to maintain a positive relationship and was conscious of ensuring he respected his friend’s autonomy and maintained trust while supporting him to make important decisions.
“It has been rewarding to work together with professionals to ensure my friend’s voice is heard, and we have seen significant improvements in his health, hygiene, and social interactions.
My friend is once again able to take part in activities and to continue building relationships with friends and family”.
– Bernard: advocate, guardian and close friend.
Thank you, Bernard and Helen, for sharing your experiences of guardianship with us, we really appreciate you sharing your time and insights with us.
If you've been appointed as a private or Enduring Guardian, NSW Trustee and Guardian can support you in your role by providing information, guidance and education. Find out more here: Guardian support services | NSW Government
