It’s time to talk about death, dying and end-of-life care

Over recent years, a number of ground-roots programs and organisations have emerged to shine the spotlight on conversations around death and dying, highlighting the importance of taking part and planning for the inevitable.

One of those organisations working towards making Australians, of all ages, more death literate, is the GroundSwell Project, who are behind national event Dying to Know Day.

Director of the GroundSwell Project, Kerrie Noonan, says these are conversations that “everyone ought to have” and says it’s never too early to discuss and think about.

“People often think of end of life conversations almost like a medical procedure,” she explains.

“It’s common to think that people don’t want to have end of life conversations or that people will be distressed if you bring it up.

“But recently, there have been a number of community surveys challenging this.

“Palliative Care Australia often have surveys that show a majority of Australians want to talk about planning for death better – in 2016 there was a great report that found over 70 percent of over 55s think we should talk more about death and plan better for dying.

“We probably just need to stop repeating the myth that death is a taboo topic and no-one wants to talk about death.”

While advocating for people to initiate conversations about end of life care, Ms Noonan says it’s also important to not always leave it until the last minute.

“There are triggers that lead to end of life conversations – most of us have these conversations when we’ve had a health scare or when we read an article like this,” she says.

“For the most part, people tend to avoid talking about it until one of these triggers come along.

“I would encourage people to not be afraid but instead use it as a time to take action.

“If people talk about their wishes BEFORE sh*t hits the fan, they are more likely to be able to make thoughtful choices about their care.

“Don’t wait for the crisis, but if one happens, then use that to allow yourself to think about what your end of life wishes are.”

When discussing and deciding on end of life care and what our individual needs and wishes are, Ms Noonan says it is important to engage with people as well as health professionals.

“We all absolutely need to talk to our doctor and/or other health professionals, but the conversations can’t stop there – your family and friends are the ones who will be advocating on your behalf and you can empower by sharing your wishes,” she explains.

“Writing things down definitely changes something within the person and it also helps as a substitute decision maker because your wishes are in black and white.”

She adds that there is the option to use a ‘formal’ advance care directive, or write your own wishes, noting that under law, both count.

Ms Noonan also suggests appointing an enduring guardian – a person who can legally speak on your behalf if you don’t have capacity.

Palliative Care Australia’s Chief Executive Officer Liz Callaghan reiterates the importance of end of life conversations, saying it is vital to have them with family so they understand your end of life wishes and are able to advocate for you.

“We know families struggle to talk about death and dying, how they want to be remembered and how they want to leave this world,” Ms Callaghan says.

“Four out of five Australians think it’s important to discuss their end of life wishes, but only one in five has actually had the conversation.

“While it’s scary to talk about death and dying, it’s vital we do.

“If we don’t talk to our families and friends about what we want when facing the end of our lives, then they have no information, no guidance, on which to base decisions they may have to make on our behalf.

“Talking in advance can reduce stress at the time of a serious illness and can help your family to make decisions about your care… if people can talk about what type of care they would want, they are more likely to receive it when the time comes.”

While encouraging the discussion with family and friends, Ms Callaghan says it’s important to keep talking about what you want. Noting that your care wishes may change over time.

She also acknowledges that while there is no “right time” to start these conversations, Palliative Care Australia encourages anyone living with a chronic illness or aged over 65 to begin to think and talk about their care wishes.

To assist you and your family with end of life conversations, Palliative Care Australia has developed a Dying to Talk resource which Ms Callaghan says aims to reach into the community to “normalise dying in Australia” and to help Australians work out what’s right for them at the end of their lives.

“The online discussion starter and card game is an easy, interactive and accessible way for all Australians to work out what is most important for them at end of life,” she explains.

“The resources support you to work out what you would be most important to you and how to raise the subject with your loved ones.

“If you want to start the conversations Palliative Care Australia’s Dying to Talk resources, your General Practitioner and Advance Care Planning Australia are great places to start.”

Access the Dying to Talk, Dying to Know Day resources and more information on end of life conversations online via the GroundSwell Project or Palliative Care Australia websites.