Elizabeth is a palliative care doctor in an Australian hospital. She’s been supporting patients and their families to live a quality life and through their final days. In her many years working as a palliative care doctor, Elizabeth has learned a lot about living, dying well, and not so well. Here she shares her tips for having your wishes for your final days respected.
1. Don’t get older or become seriously unwell without a plan
Trust me - you don’t want to be elderly or critically ill and sent off to hospital without an advance care directive to guide your care. You don’t want to let it happen to your parents or your partner either. 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 30 per cent 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 treatment that you want
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 acceptable and unacceptable, how would you expect an emergency doctor you’ve never met to know what you would want?
4. Talking about dying is never as hard as a prolonged, painful death
Truth be told, our death denying culture is robbing too many people of a comfortable and dignified end. People often put off the conversation, believing it to be too difficult. Yet those who do advance care planning report feeling more comfortable 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. Stop talking about a ‘battle’
Talking about a ‘battle’ is not helpful for someone facing the end of their life. This suggests it’s 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 an individual might want to spend the time they have left. Death is the ultimate fate for all of us and it’s a natural life experience. It’s more helpful to think of it as a ‘journey’ rather than a ‘battle’.
6. Advance care planning is not just for older people
We don’t all get to live to a grand old age. Sudden critical incidents like car accidents, heart attacks and strokes can happen to anyone. If you 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 treatment decisions for you.
7. Having a loving family does not guarantee they will know your preferences
I’ve seen the most loving of families torn apart because they cannot agree on the best course of action for a family member in a critical situation. Don’t let this happen to your family. Better to have this conversation over a relaxed family dinner, rather than at 3AM in Emergency.
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. Remember, the most important part of advance care planning is you. This is your opportunity to be heard.
Make your wishes known when you cannot speak for yourself, upload your advance care planning documents to your My Health Record. By adding advance care planning documents to your record, your wishes can be safely and securely accessed if they were ever needed in a medical emergency. Find out more about uploading your advance care planning documents to My Health Record.
Remember, the most important part of advance care planning is you. This is your opportunity to be heard.
* Names and personal details have been changed for privacy reasons.