As the co-convenor the Parliamentary Friends of Palliative Care and of Dementia I want to encourage every adult, no matter what age, to complete an advance care plan. Why? Because tomorrow is guaranteed to no one. Accidents and health emergencies happen every single day, and what happens if tomorrow you become seriously ill or totally unable to communicate or make your preferred treatment decisions? A friend of mine regained consciousness on her kitchen floor following a stroke, unable to speak or move. Decisions about her treatment and care had to be made by others.
As we age it’s even more important to have end-of-life care plans. I remember a quote from Dr Sarah Winch from a 2014 National Palliative Care Week, where she said, ‘We have not cured death and we’re not likely to, so why don’t we plan for one of life certainties?’ Your advance care plan will make sure your loved ones and healthcare providers make sure your treatment and care preferences actually happen the way that you want. Effectively, you’re still in charge. Most importantly, your family will know exactly what you do and don’t want. It will save many family arguments and the emotional pressure and guilt for family members having to make tough decisions on your behalf. And why? Because I understand that almost 50 per cent of us will be unable to consent to medical decisions that are made at the ends of our lives—we won’t be well enough to do so. So start the process at National Advance Care Planning Support Service on 1300208582, and have a look at the website for practical advice and an email starter pack. Make sure you look at the relevant information, given that each state and territory has slightly different laws and arrangements, and find out where you can get along to an advance care planning session.
Ideally, you should start planning when you are healthy and well, before there is actually a need for a plan. A Palliative Care Australia survey some years ago found that 88 per cent of people thought it was important to think and talk about their preferences for end-of-life care, but only 56 per cent of people had acted. In my state of WA the components of an advance care plan are: the enduring power of guardianship to appoint a substitute decision-maker; an advance health directive—a legal recording of your wishes regarding future medical care; and the advance care plan itself, the one that documents your wishes and instructions with your substitute decisionmaker and doctor. Your enduring guardian is someone you elect to make decisions on your behalf regarding your care. It needs to be someone you trust implicitly, who will listen to your values and wishes for future care and do what you want. You also need to know which of these instruments has precedence over the other in each state and territory.
An advance health directive is a legal document which contains your decisions about future treatment and can be completed only while you have the capacity to communicate your decisions. Start the process by getting hold of the documents and then think about what life means to you. Write down what you consider a good death. Have a bucket list and do as much as you can while you can. Build your support crew and your enduring guardian. Create and sign an advance health directive and discuss your plan with your health professionals and personal support team. Write down a care wish list. Palliative care services—do you want them in hospital or at home? The majority of us want to die at home, but only 15 per cent of us actually do so. How will you plan and prepare for this if this is your preference? You can incorporate your cultural and religious beliefs as well.
Discuss everything with the people you love and have that tough conversation. It is a tough one to have and to start. Like in many things in our lives, our thoughts can change, and these documents can be updated to ensure that your needs are met. It’s important that you have this discussion, no matter what age you are. I had a discussion with my own daughter about what was right for me, and then it was only a couple of years later when I was with her for 11 days in ICU when the view was that she was not going to survive. I had said to her, ‘What do you want if it’s you, not me?’ She said, ‘Gee, Mum!’ I said, ‘I need to know.’ I can only say that I was so grateful that I’d that discussion with my daughter, who was just over 30 at the time, so I knew exactly what she wanted should it have become necessary.
I really encourage you to have these tough discussions. Start thinking about and planning for this yourself, and make sure that you take that pressure off your family members. Make sure it is a care delivery and setting that you really want—home versus hospital. There is a wealth of information on the Advance Care Planning Australia website. Please make sure you visit it and have a look at the wonderful Dementia Australia live the life you please as well.