How to talk about your advance care planning when you’re unsure what to say

Over my dead body. A fate worse than death. I could’ve died on the spot. Frightened to death. We talk about dying all the time in casual conversation without even thinking about it.

But when it comes to serious discussions about our own death, we’re not so comfortable; more than 80 per cent of Australians say it’s important they talk to family members about their end-of-life wishes but less than 30 per cent have actually done so.

It’s easy to come up with excuses for putting off the conversation about how you would like to spend your final weeks, days and hours – you’re too busy right now, you don’t like thinking about your own mortality, your kids don’t like talking about your mortality or, perhaps most likely, it’s a really big topic and you just don’t know where to start.

But Lana Glogowski sees the real-life benefits of clearly communicated end-of-life wishes every day in her role as the chief executive of Palliative Care Western Australia, and recommends documenting your own thoughts in the series of documents that make up advance care planning.

There are eight key strands of advance care planning. Some are well known, such as nominating an enduring power of attorney (EPOA) or enduring power of guardianship, logging an advance health directive (AHD) with health authorities and ensuring you’ve created a will. Others are part of common conversation you might’ve chatted about but not recorded your thoughts on, such as organ and tissue donation and palliative care. But you’re likely to be less familiar with an advance care plan.

An advance care plan sets out your preferences on a wide range of end-of-life issues, from the treatment you receive to the people who visit you on your deathbed, that’s designed to ensure your values are respected and you die with dignity.

“An advance care plan is all about your choices being recognised,” Glogowski notes.

She points out that there are helpful resources available, too, for people who are struggling to start the conversation with their loved ones, let alone commit their wishes to a formal document – whether that be an advance care plan, an EPOA, an AHD or a will.

“Many people have found it too confusing in the past to find the information they needed online because it can seem like some of the forms have too many bits that don’t apply to them,” she explains. “We’d really encourage people to visit our new site, youonlydieonce.com.au, where all of the resources are in one place and they can find answers to the questions they may have about advance care planning.”

Youonlydieonce.com.au, which is part of Palliative Care WA’s big push to teach more Aussies about the importance of advance care planning, even has links to helpful kickstarters you can use if you’re unsure where to start when it comes to thinking and talking about the end of life – which we’ve made a short summary of here.

Kickstart your advance care planning

Before launching into a discussion about death over the family dinner table, Glogowski recommends taking the time to reflect on how you like to live, because this can shed more light on how you may wish to spend the time near your death. Some of your considerations could include:

• How important is quality of life versus length of life; would you rather your time on Earth was extended as much as possible by medical science even if that meant you became sicker during the period you were kept alive?
• Are there considerations that might impact the type of end-of-life care you receive; for example, is it key that you have a chance to say goodbye to loved ones, does the thought of being a burden on your family worry you or are there activities, such as walking or eating, that you feel it’s important you retain?
• Do you have a bucket list; are there things you would like to do, say or experience before you die? How important is it to you that you tick everything off your list and would you want others to help you do so, if you were no longer able to make that decision?
• How much information do you like to know any illness you may have; are you a person who likes to hear the basics from their doctor and nothing more or do are you an avid user of Dr Google? How much information on an illness do you tend to share with your loved ones? And do you like to be very involved in decisions about your own care or are you happy to leave it in the hands of the doctors?
• Is the location of your death important to you; is your heart set on dying at home in your own bed or would you prefer to be within reach of healthcare professionals in, say, a hospital or hospice? Is there a location, such as a favourite beach or park, that you’d love to visit one last time if you’re able?
• What would be most important to you as your death nears; would you prefer a big crowd of visitors, just a few close friends or family members or is there someone in particular you’d like to see or speak to? Would you like to have music playing, activity and chatter around you or a quiet environment?

Opening the advance care planning conversation

Once you’ve clarified in your own mind some of the big issues that influence your end-of-life wishes, you may prefer to write down the topics you’d like to broach with loved ones, especially the two or three big points that are most important to you.

Youonlydieonce.com.au includes a link to a great ‘discussion starter’ document that you can download and fill in or complete online, which helps you note down your answers to the big questions we covered above and advises you on your next steps.

Your next step is to decide whether your family works better with a more formal discussion or an informal chat.

If it’s the former, you could set a date to talk to your children, partner, spouse or a trusted friend to discuss not just your advance care plan – you could use your completed discussion-starter document to help your loved ones understand your thoughts in more detail –  but to go over your will and any EPOA, enduring power of guardianship or AHD you may have.

If your partner and kids prefer a more relaxed chat, there a few easy ways to kick off the conversation over a cuppa. You could try:

• Bringing up the recent passing of a celebrity to open the discussion about your own wishes
• Raising the end-of-life care of a person you know or have known, so you can go on to talk about how your wishes compare to the treatment they’re receiving or received
• Mentioning that you’ve come across the online discussion starter and that it got you thinking about your own end-of-life wishes.

Lana Glogowski of Palliative Care WA says that you may need to broach the conversation more than once and communicate your wishes in small chunks, but that simply having the chat can make a big difference to your end-of-life outcome.

“If you just have the talk, you’re way ahead of the eight-ball,” Glogowski says. “Even if you haven’t written it down, emergency physicians say it’s immensely helpful for your family to be able to explain your treatment wishes to them.

Once your family is comfortable with the conversation, you could then make a date to have a more detailed discussion that includes your completed discussion-starter document, your advance care plan itself or any EPOA, AHD or will you’ve already completed.

“But if your children don’t want to, or can’t, have that conversation with you, writing it down is hugely valuable so you’re all on the same page,” Glogowski adds.

Your next advance care planning steps

You can read more about advance care planning here and find all of the information and resources you need to make your own at youonlydieonce.com.au. Palliative Care WA also runs workshops to help older Australians document get started on their advance care planning.

Once you’ve done your advance care planning, you should keep the original documents in a place that your loved ones can easily find. Digital versions can be provided to your GP and any hospital at which you’re already being treated, and uploaded to the national My Health Record system run by the federal government.