A quick guide to preparing for the end of life
By Dr Elly Warren – FRACGP
If this topic makes you want to turn the page, resist the urge! For many of us, talking about death is scary, taboo, or morbid. We’d rather avoid the topic.
Regardless of age or life stage, planning for the end of our lives can be empowering, reduce anxiety and bring us closer together. It’s important to talk about what you want at the end of life with those closest to you. We all have a responsibility to make sure our loved ones know our wishes. We don’t have to (in fact, we shouldn’t) wait for a crisis to start these conversations.
We’re not very good at talking about dying in Australia. Almost 80% of Australians agree they should think and talk about their preferences for end-of-life care with family. Only 25% of Australians, however, have talked to another family member about their wishes. There is a disconnect between what people think and what they do. While most Australians think that planning ahead will give them a sense of control over their care, give them a say in where they spend their final days and reduce the stress on loved ones, only:
- 43% have a will
- 18% have a Power of Attorney
- 18% have an Enduring Guardian
- 17% have an Advance Care Directive, plan or other document outlining wishes for end of life.
There are many reasons why people have never talked, or sometimes even thought about, their end of life wishes.
These might include:
- Cultural or religious traditions
- Fear of dying
- Belief that they are too young
- Belief that they are too healthy
- Reliance on others to raise the conversation
- History of trauma and abuse
- Currently experiencing abuse or neglect
- Not wanting to upset others
- Not having anyone to talk to
Many people die in hospital in ways that they wouldn’t choose. Between 60-70% of Australians would prefer to die at home but only about 14% do. Families are often faced with difficult decisions at the end of life. Early conversations can help future decisions and improve culturally appropriate and person-centred care when the time comes.
Here are a few simple steps to make the end of life process easier:
- Write a will
- Appoint a Power of Attorney
- Appoint an Enduring Guardian
- Write an Advanced Care Directive
- Register as an organ and tissue donor
- Plan your funeral
- Document your wishes with your GP, local health service and or My Health Record
- Most importantly, talk to your loved ones about all of the above!
It is free to write a will and appoint a Power of Attorney and Enduring Guardian through the NSW Trustee and Guardian if you receive a Full Centrelink Age Pension. Alternatively, you can use a personal lawyer. Your Power of Attorney can manage your assets and make decisions about your finances like paying bills and managing investments. They can also sign legal documents for you. Your Enduring Guardian can make health and lifestyle decisions for you. They can make choices about where you live and the treatment you receive. It is important to choose your Power of Attorney and Enduring Guardian carefully as they are in a position of trust and have a responsibility to act in your best interests.
If you become unable to make decisions, an Advanced Care Directive is a way to say what healthcare treatments you would like to have or refuse. Doctors and family members cannot override a valid Advanced Care Directive in NSW. An Advanced Care Directive may include:
- The person who you would like to make medical decisions for you if you are unable to
- Details of what is important to you, such as your values, life goals and preferred outcomes
- The treatments and care you would like or would refuse if you have a life threatening illness or injury.
Making decisions about your own life and having those decisions respected is an essential right, including for those with cognitive impairment or living with a disability. Cognitive impairment is not a reason to exclude someone from their own decision making. Their decision-making can be supported and enabled by those closest to them, so that the important choices are still theirs.
Remember, having a discussion about dying doesn’t mean you are about to die. We should all get our affairs in order, no matter how old or young, unwell or fighting fit. It’s also important to know that you can review or revisit any of your decisions or documentation and update them at any time if your circumstances change.
So, take the plunge and start your conversation about death and dying today! Once you cut through the first awkward moments, it can be fun, funny and save your loved ones a whole lot of grief and distress later.
For more information, insights and conversation starters, take a look at
these websites:
- NSW Trustee and Guardian
- www.tag.nsw.gov.au
- Dying to Talk
- www.dyingtotalk.org.au
- Aboriginal and Torres Strait Islander yarns
- www.dyingtotalk.org.au/aboriginal-torres-strait-islander-discussion-starter
- CareSearch
- www.caresearch.com.au
- Organ Donation register
- www.donatelife.gov.au
- The Groundswell Project
- www.thegroundswellproject.com
- Death Over Dinner
- www.deathoverdinner.org.au
- Or talk to your friendly GP!
Elly enjoys being a GP at Your Family Doctors at Erina and Yerin Eleanor Duncan Aboriginal Health Centre. She cycles huge distances to raise money for cancer research, support and prevention. Check out her ‘What should I know about cancer?’ series on Instagram @drelly_warren and ‘Dr Elly’s Tour de Cure adventures’ on Facebook @drellystdc. Her newest project will take her to Bright, Victoria in Jan 2022, where she will ride 500km in 36hrs to improve cancer outcomes for Aboriginal and Torres Strait Islander people. www.alpineeveresting.com.au