My mum died on a summer’s morning.
When I walked out of the hospital, where I had spent the last several days and nights curled on a small couch next to her bed, I felt like a stray root of some ancient tree that had accidentally broken out of the earth and into foreign air – wholly unprepared for the strange world I now found myself in.
I thought that when she died, maybe the sun would have fallen out of the sky. But it was still bright, golden – as vibrant as my mum had been. On the drive home along the Tasmanian coastline Mum had loved so much, the sea spread out to the horizon in rolls of brilliant emerald.
Being with her in the months, days and hours up to her death from cancer was the hardest thing I have ever done. It also felt like the most important.
And there was one piece of information that allowed us to recognise what was happening at a crucial moment: a sign that death was close.
This information was imparted by a nurse whose name I don’t know. She pulled us aside in the hospital corridor when it suddenly became apparent they wouldn’t be sending Mum home with a dose of antibiotics like the times before.
The nurse asked if we knew there are often changes to someone’s breathing shortly before death: alternations between periods of shallow breathing, deeper rapid breaths and sometimes substantial pauses known as Cheyne-Stokes breathing.
This meant that several days later, when her breathing did exactly this, rather than calling for a nurse to ask what was happening, my dad, brother, sister-in-law and I spoke to Mum as she died.
It meant Mum died hearing the voices of her family telling her how much we loved her; she died being held.
There are some other things I wish we had known about death in the months beforehand – things that were confronting, heartbreaking, signs of impending death we missed entirely or which we misunderstood as meaning she had more time left.
And while every death is different, experts say knowing some of the common signs that it may be near can change the experience for both the person at the end of their life and their loved ones.
Dr Kerrie Noonan, a clinical psychologist and director of the Death Literacy Institute, says that today most people are quite removed from death, dying and illness – meaning we may not recognise signs that someone is approaching the end of their life.
“So, when those signs come, we often haven’t seen them before and are relying on health professionals to point them out,” says Noonan, an adjunct associate professor at La Trobe University’s public health palliative care unit. “And if that doesn’t happen, they can be quite shocking and difficult to cope with.”
Understanding the signs
Jason Mills, a registered nurse and associate professor at Flinders University’s research centre for palliative care, death and dying, says the dying process – from months to hours before death – varies for everyone and there will be different symptoms and trajectories even among those with the same illness.
But he says there are some common changes when someone’s body is shutting down due to advanced illness or age-related decline.
Eating and drinking decreases, and may stop altogether. This can be upsetting to loved ones, Mills says, because food has such a prominent place in our social and family lives.
But he stresses: “It’s not that they’re giving up on you or that they don’t love you. Their body just can’t tolerate it any more.”
Ken Hillman, professor of intensive care at the University of New South Wales and director of the Simpson Centre for health services research, says “becoming weaker, not moving around as much, drifting in and out of consciousness” are all common.
As is delirium, which may range from confusion, drowsiness and delusions, to hallucinations, euphoria and agitation.
Some dying people experience a surge in mental clarity or energy levels in their final days or hours. This may offer a chance for lucid goodbyes – but can also give friends and family false hope the person is recovering.
Irregular, loud and laboured breathing can also be distressing to hear, or make it seem the person has died before they actually have.
“It can be really frightening when you’re at the bedside of someone dying, and the period of them not breathing is very, very long and so relatives think they’ve passed, then suddenly they take this huge breath,” Hillman says.
Mills recommends asking a health professional if you’re concerned by something, since there are often things that help – including adjusting positions, medication or sometimes simply an explanation.
“For example, rattly breathing can be really distressing for family and people around someone who’s dying, and often clinicians can prescribe [medication], because ultimately the noisy breathing is due to fluid secretions accumulating at the back of the throat … but it’s not actually causing distress or harm to the dying person.”
Both experts encourage holding the dying person’s hand or gently stroking their forehead, and continuing to speak to them.
“I always tell relatives hearing is the last to go,” Hillman says.
‘Death-denying society’
Hillman says the medicalisation of death – while alleviating a lot of suffering – can mean social and spiritual aspects are forgotten.
“We live in a death-denying society,” Hillman says, noting that since doctors are “programmed to cure people” even they can struggle to step back and recognise that someone is dying.
Pressure to do everything possible to extend life can come from both families and health professionals, Mills adds. “Whether it’s tacit or otherwise, death is often seen as a medical failure.”
Cultural and religious beliefs also influence if and how death is discussed.
Eliza Munro, a Gamilaroi woman and sorry business consultant with Ngiyani Wandabaa, is exploring death and dying in First Nations communities globally as a Churchill fellow.
She says beliefs vary across communities. In some, death is celebratory – a return to ancestors; some hold to Christian concepts of heaven and hell; and for some, talking about death and dying is taboo and often seen as “manifesting death”.
“[If it’s taboo] this impacts access to palliative care and planning ahead for sorry business and sad news … as well as the cultural protocols after someone has passed,” Munro says.
Munro and Mills both stress that not knowing a person’s wishes for their death and beyond can affect the grieving process and have significant financial impacts on families trying to make decisions for them.
Mills says avoiding the topic also means missing opportunities to support others.
“If we’re all busy being in denial about death, what often happens is people disappear – when they find out someone is dying, they think, ‘That’s scary, I don’t know what to say’.”
“Death literacy is our ‘knowhow’ around death, dying, loss and grief, and how that helps us to plan better and to be prepared for end-of-life and death experiences,” says Noonan, who helped develop the concept and a tool to measure it.
Using this index in a survey of 1,202 Australians (chosen to be nationally representative, though the full data is not yet published), Noonan says death literacy appeared to grow between 2019 and 2023, with Covid-19 and the introduction of voluntary assisted dying laws triggering more learning about end of life.
For all of us, information helps reduce the fear of the unknown.
“Uncertainty tends to cause stress and anxiety … so whether you read some information, or have a conversation with a friend – if you can find a way to alleviate that uncertainty, your anxiety and stress, on one level, can come down,” Noonan says.
Even with extensive planning, support and a knowledge of the most common signs, Mills also reminds family and friends to be gentle with themselves, as dying is unpredictable.
“When someone has been spending hours on end by someone’s bedside wanting to be there the moment they die, then the moment they walk away to go to the toilet, that person dies … it’s not helpful to beat ourselves up and say, ‘I should have done this or that,’” he says.
Alongside decision-making, he says discussions about death can help us to live more meaningfully.
“I’m not trying to romanticise death – it’s not easy, but it’s an important part of life and the better we can understand it and prepare for it, then I think we’re all better for it, individually and collectively.”
• In Australia, support is available at Beyond Blue on 1300 22 4636, Lifeline on 13 11 14, and at MensLine on 1300 789 978. In the UK, the charity Mind is available on 0300 123 3393 and Childline on 0800 1111. In the US, call or text Mental Health America at 988 or chat 988lifeline.org
