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In the lead up to National Advance Care Planning Week (23-27 March) we spoke with Elizabeth, an Australian palliative care doctor in a metropolitan hospital. She's supporting hundreds of patients and their families in their final weeks and days. Here she shares her top tips for increasing your odds of experiencing a more peaceful death.
1. Don't grow old or get seriously unwell without a plan
Trust me - you don't want to be an elderly person or critically ill and sent off to hospital without an Advance Care Directive to guide your care. Don't be that person. Don't let it happen to your parents. Get your affairs in order and write the plan! Don't wait for a crisis.
2. Appoint a substitute-decision maker you can trust
Around 50% of people will be unable to make their own end-of-life treatment decisions. If this happens to you, who will speak for you? Your substitute decision-maker should have the confidence to speak up, stay level-headed in a crisis and be prepared to advocate for what you would want. Make sure it's someone you trust to make decisions according to your values, not theirs.
3. Don't assume your doctor will know the best treatment for you
Doctors are experts in medicine; we're not mind-readers. We want to do the right thing, but feel bound to save your life if you don't clearly express your wishes otherwise. If you don't communicate what quality of life means to you or what medical outcomes you would find unacceptable, how you would expect an emergency doctor you've never met to make the right call for you?
4. Talking about dying is not harder than a prolonged, painful death
Let's not mince words. Our death denying culture is robbing too many people of a comfortable and dignified end. People put off the conversation believing it to be too difficult. But those who do advance care planning report feeling more comfortable and at peace with the knowledge that they have documented their wishes. Having seen the consequences of patients ending their days without a clear plan, my advice is start the conversation sooner, rather than later.
5. Lose 'the battle' metaphor
I'm not convinced the 'battle' metaphor is helpful for someone facing the end of their life. The battle infers it is something that can be won or overcome by the bravest 'warriors'. Sometimes all that fighting talk gets in the way of honest and realistic conversations about how the patient might want to spend the time they have left. Regardless of illness or medical prognosis, death is the ultimate fate of us all. Death is a natural life experience, it's not something we 'succumb' to. And it's not a failure! If metaphors are needed, I would prefer 'journey'.
6. Advance care planning is not just for old people
We don't all get to live out our threescore years and ten. Sudden events can happen to anyone. Car accidents, heart attacks, strokes, the list goes on. If you're unlucky enough to find yourself in this situation, chances are you will be unable to make your own medical treatment decisions. Without a plan making your preferences clear, then you leave it up to others to make life and death decisions for you.
7. Having a loving family does not guarantee a peaceful end
Bad things happen to great families. I've seen the most loving of families torn apart because they cannot agree on the best course of action for a family member. Don't let this happen to your family. Better to have this conversation over a relaxed family dinner, rather than at 3am in the emergency room.
8. Speak up and be clear about what you want
The key to dying well is living well for as long as possible. Be clear about what matters most to you. In your final days is it more important that you remain lucid or pain-free? Would you prefer the quiet company of close family or a larger circle of friends? You might prefer the comfort of your beloved pet. Remember, the most important part of your advance care plan is you. This is your opportunity be heard.
Get involved in National Advance Care Planning Week!
National Advance Care Planning Week is an initiative that encourages Australians to plan their future care and will be held 23 - 27 March. Visit the website for more information, find participating events Australia-wide or to access a free email information pack.
For free, personalised advice call Advance Care Planning Australia's National Advisory Service on 1300 208 582, 9am - 5pm (AEST) Monday to Friday.
Advance Care Planning Australia is supported by funding from the Australian Government.
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