Why did you join ACPA as a volunteer community ambassador?
I joined ACPA as a volunteer community ambassador because of the opportunity the role gives me to support individuals and health practitioners to implement advance care planning, should people be unable to make decisions about their health care treatment for themselves.
I’ve also been helped in my personal life by mother having an ACP. (see more below). This helped to ensure that decisions reflected her values, and made a very difficult situation, much easier than it otherwise would have been.
What kind of activities do you do in your role as a volunteer community ambassador?
I’m a relatively new ACPA volunteer community ambassador, working for 4 hours each week on the National Advisory Service. This mostly involves taking calls from people anywhere in Australia, with their queries about ACPs in their state or territory.
Most calls are made by people enquiring for themselves or a family member, and those working with people developing an ACP or likely to benefit from an ACP.
What did you do professionally before volunteering with ACPA?
I have retired, but my professional roles have influenced my decision to become an ACPA community ambassador.
I started out my professional life as a psychiatric nurse, working in Melbourne, then in London.
I did general nursing when I returned to Australia, intending to go back to mental health practice when I completed my course. However, I was introduced to critical care, and subsequently did an intensive and coronary care course, which led to me becoming an academic. I went on to complete a Masters in Bioethics, and ethics became my main area of teaching midwifery, medical, nursing and paramedic students.
How has your professional prepared you for your work with ACPA?
My critical care nursing practice highlighted the fact that people may receive very invasive health care interventions that they may refuse if they could be asked for their consent.
In Australia, with our advanced health care system, treatment, including invasive intensive care treatment, is typically undertaken unless there is legally binding evidence of the patient’s refusal. In many situations, the availability of this care is wonderful for patients and their families/friends, but this is not always the case - a fact known to experienced critical care staff. I think this is why, in Australia and overseas, critical care practitioners have been involved in the development of frameworks to enable advance care planning.
My work as an academic, teaching ethics and health care law, has also informed my commitment to ACPs. My post graduate students, including those involved in aged care and critical care, would discuss case studies in which people without capacity to refuse or consent to treatment, would be given life-sustaining treatments they may not choose.
Among the most distressing stories, were orders to administer tube feeding to people who appeared to be resisting this, but were unable to state their refusal in ways that would be legally binding.
My work as a mental health nurse, has also influenced my interest in ACPs for people receiving psychiatric treatment. This is a group for whom recognition of their values and wishes, and understanding of their care and its impact, is often dismissed and disregarded because of our attitudes to people with mental illness. So I have welcomed legal changes in Australia, that enable people in a number of jurisdictions to develop psychiatric advance directives.
Do you have any personal experience with advance care planning?
My personal experience with my Mum has highlighted for me many of the benefits that the research about ACPs shows.
In the 1990s, my Mum appointed me as her substitute decision-maker (SDM) under the previous (and more limited) Medical Treatment Act that operated in Victoria. I made sure I spoke with her about her wishes and clarified questions that I had. For example, she was a minister of religion, and supported people with very advanced dementia, so I thought she might want her own life sustained, regardless of her cognitive state. She promptly rejected the idea, with a laugh suggesting I should have known better!
Years later, at 88, her physical health deteriorated and she was no longer able to drive, significantly affecting her ability to continue her community and religious work, and her capacity to live independently. There was conflict in our family about how best to support our beloved mother, particularly given the independent, very full life she had led. The conflict was distressing for our Mum as well as us, and I was worried about what might happen if I was required to make a decision as her SDM.
For this reason, I suggested that my brothers and I all meet with our Mum to record her treatment wishes and values in writing. This meant that both she and I could feel reassured that potential conflict about medical treatment decisions would be avoided or minimised. But it was also a good meeting for all of us. We all cared about our mother and our relationships with each other are important to us. My brothers also learnt about the value of ACPs for themselves!
Aged 89, my Mum became very unwell and her cognitive status was intermittently impaired over a period of a few weeks, but no underlying cause/s could be found. When her condition took a further downturn and she lost consciousness, I had to decide whether to call an ambulance or leave her at home to be cared for without medical investigations and interventions.
My conversations with my Mum, and the ACP she’d developed helped me decide to care for her at home. She died the following day, and lay in state, the matriarch of the large extended family that sat with her and celebrated her life (and our good fortune to be her children, grandchildren and great grandchild) in the hours that followed.
What makes you a good ACPA volunteer community ambassador?
While it’s not necessary for my role, my personal and previous professional experiences, help me to see the importance and benefits of ACP for the person involved and their families/friends. However, it’s also essential to listen carefully to the person’s story, to make sure I’m responding to their particular concern and circumstances.
I felt very anxious about the role initially, as it’s hard starting out, to feel confident that you’ll know how to respond to callers’ wide range of questions and their different jurisdictions. But like anything I guess, confidence and knowledge builds up over time, and if a query can’t be answered immediately, the caller can be reassured we’ll get back to them shortly!