How to make talking about death and dying easier
Death is an uncomfortable topic of discussion. We don’t like to talk about it. We tend to avoid it when it comes up. And we resort to euphemisms to speak about it.
But on average 435 Australia die each day, according to the ABS. Most will know they are at the end of the lives, and hopefully most will have had time to think, talk about, plan and achieve the “good death” they want.
However, few of us ever really spend much time thinking about the end of our lives, or that of our loved ones. But we have to if, as we all want for ourselves and the ones closest to us, we want to have a good death.
It’s a conversation that the first ever two-day Good Life Good Death Expo in Queensland is trying to start. An initiative of Palliative Care Queensland, the free expo aims to help people start the conversation, remove taboos, and to normalise death. It’s only when we can acknowledge death as a natural part of life that we are able and willing to prepare for the death we want – and to make the best choice to get there.
Breaking down the taboo of death and dying
John Haberecht, president of Palliative Care Queensland and Director of Learning & Development at the Centre for Palliative Care Research & Education, says death is “one of the last taboos”.
“I often say death and dying is like sex was in the Victorian times – nobody wants to talk about it,” remarks John.
It wasn’t always this way though, 100 years ago very few people died in hospitals. They died at home surrounded by family, friends, neighbours and loved ones.
“It was very much a part of life,” says John, “But now very few people experience that.”
“Our society, our health system, has removed death and dying from everyday life.”
With death and dying so removed from our everyday lives, the fear of the unknown is strong. But John has seen first-hand how speaking openly about how we want to die has helped many families when they are at the end of life stage.
The importance of starting the conversation
Having spent many years as a clinical nurse in palliative care, working with patients, families and carers in both the community and hospital setting, John saw the same situation time and time again.
“The doctors come to the family and say, ‘What would your mum/dad/child want? What would they want in this situation?’ In most cases, they would look at each other and say we’ve got no idea,” says John.
“[The expo] is very much about helping people to be comfortable with having those conversations… it’s about making it easier for people when they get to those critical situations in their lives, where decisions need to be made.”
John adds, “We know from evidence, from anecdotal feedback, that people find it so much easier when these discussions have already been had. When family members say, ‘When it gets to the point where I'm not going to have quality of life anymore, then I want XYZ to happen. I don't want this, I don't want that.’”
Tackling the hard topics at the expo
Too often information, resources and support about death and dying is hidden from public view – and very rarely do you even see the words “death” appear or spoken in relation to end-of-life care.
It’s why Palliative Care Queensland chose the expo name “Good Life, Good Death”. Death is, after all, a part of life, and ideally a good life should end with a good death. The expo will be a safe, fun and friendly space that will provide you with information, resources and support to have a good life and good death. The expert talks will introduce people to what it takes to achieve a good death, as well as the resources and support services out in the community you may not know are available to you.
“One of the things that people often used to say to me when I worked in the clinical area is, ‘I had no idea there was so much support available’ because the resources and the support that are available as they get toward end of life are tremendous,” says John.
“Things like being put in touch with organisations that can help with financial support if they need, home care, or health professions visiting people at home. People often think they need 24-hour healthcare but it's generally not necessary. People can be managed very well at home with daily visits from nurses to help with their care.”
“Until we're faced with a situation where our loved ones might need that home care, that extra support, it's naturally not something we're going to think about,” adds John.
It’s time to discuss what a good death looks like
Contrary to public perception, a “good death” is not an oxymoron – and the expo is all about getting people to start thinking about what they want for a good death, and giving them the information they need to take control of the final stage of life when the time comes.
“The first thing is to have the conversation or series of conversations around death and dying – identifying what it is that the person would like as they get towards end of life,” advises John, adding, “It’s also identifying the things they don't want to happen; for example, going to ICU if there's no prospect of them having any quality of life after.”
“Secondly, it’s about documenting their wishes. There are a number of document around that are important to get in order: Advance Health Directive, Enduring Power of Attorney, a Will. The Statement of Choices is another option here in Queensland, even though it’s not a legal document,” says John.
“You want to know the person’s wishes for their own care, as well as how they want their assets distributed after death.”
And lastly when the time comes, a good death is, “Having the person comfortable. It's not only physical comfort, it's psychological and spiritual comfort.”
But you can only get to that stage if you’ve thought about your death, you’ve planned for it, and you know, to the extent you can, what to expect when the time comes.
In the end, we all want a good life and we all want a good death – one surrounded by our loved ones, where we are well cared for, and hopefully at peace. And we want that for our loved ones too. It is possible – there are many stories of “good deaths” and you can be one of them.
Where: Brisbane Convention and Exhibition Centre
When: 10am to 3pm, October 27-28
Cost: FREE event. No registration required.
For more information, visit the Good Life Good Death Expo website.