What is a death rattle? What to expect when expecting the end of life

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What is a good death? What is a death rattle?

No question is off limits for palliative care nurse specialist Rachael Zielinski, who tells families and relatives that death and dying are not something to whisper about.

To make her point, she raises her voice. “As a community we need to reclaim the experience of death and dying. It is OK to talk about it,” she tells a workshop called Last Days attended by 20 people in Sydney’s south.

Palliative care specialist nurse Rachael Zielinski is holding workshops aiming to equip people facing loss.Credit: Jessica Hromas

A palliative care nurse with 20 years of experience, Zielinski also wants to bring back the D words: death, dying and dead. Euphemisms like “passing” or “gone” can be confusing, she said, recounting the confusion of a woman who didn’t realise her death was imminent.

About 160,000 people die in Australia each year. Zielinski has seen hundreds die.

Every Christmas Day she remembers the first death she saw: Mrs Merriweather’s nearly 40 years ago.

Then only 18 and living in Sandgate, England, Zielinski sat with the older woman in her final moments and then kept vigil next to the woman’s body.

Last Days was developed by aged and community care provider HammondCare to demystify death and help people navigate death and dying. More sessions across Sydney have been funded by NSW Government’s Sydney North Health Network.

HammondCare’s Dr Andrew Montague said carers, family members and friends were often unprepared for what may be confronting at end of life.

“There is a need to help those who care for people at end of life to equip them to navigate their journey,” said Montague, the general manager health and hospitals. “It will also seek to encourage more openness in making and documenting end-of-life choices.”

According to a survey of 1000 Australians last year by Palliative Care Australia, 88 per cent of respondents agreed it was important to start thinking and talking about their wishes and preferences for care (if they were to become seriously or terminally ill). Despite that, only 56 per cent of those surveyed had talked about or recorded their end-of-life wishes.

Katrina Pearson was at the session to discuss how to manage the palliative care of her mother Robyn, now 72, who was diagnosed with a degenerative disease 11 years ago.

Pearson spoke with her mother about her wishes – before she agreed to go into an aged care facility when she could no longer walk. “It is important to talk about it, and it was good that we talked when she was able to do so.”

Research from Western Australia’s palliative care experts found many people thought palliative care was for the last days of life, thinking their doctor or specialist had given up. Yet research from the United Kingdom found people who receive palliative care earlier live longer and have a better quality of life.

Zielinski said: “We love early referrals. When we get people who are in the terminal phase, we get upset. We could have done so much more.”

Palliative care’s practical aspects include writing a will, delegating someone to make decisions about care, managing symptoms and pain, and identifying what is important in the final days and where and how someone wants to live and die.

Often the wishes of the dying are far from grandiose, such as a desire to eat at a local restaurant once more, look out on a garden, have grandchildren visit or have their dog on the bed.

“Many want to stay at home, in their same bed, but may change their opinion,” Zielinski said. “Dying in a hospital is not a failure.”

But dying at home takes a village.

Zielinski hopes the Last Day’s three-hour workshop and workbook will provide a place to ask questions and challenge preconceptions that caring for someone at the end of their life is something technical, private and hidden.

“Death and dying are the last taboo. We are all going to die, and many of us will care for someone who is dying.”

Death was a process like birth, with recognisable stages and progression, said Zielinski. Unlike birth, though, there are few workshops for families, and no books on “what to expect when you are expecting [to die]” or film adaptations.

The person dying usually sleeps more and eats and drinks little or nothing, which can upset families used to making food to demonstrate love and affection.

“Someone in their last days may only want a tiny spoonful of yoghurt,” she said.

The dying person may attempt to eat to show their love, too.

She recalled a woman who made her husband a grazing plate of a tiny piece of “posh chocolate”, a minuscule bit of sandwich, and fruit.

“He took a little nibble from the sandwich and put it back,” Zielinski said.

That upset his wife.

“I said [to her], ‘That is just the most beautiful thing I’ve seen. It’s a pure gift of love. Look at that, he actually doesn’t need or want it.’ So it’s about education. It’s about understanding those changes.”

Families frequently find “the death rattle” – experts call them terminal secretions – distressing because they think the person dying may be in pain or anguished.

“It is like a snore, which you are not aware you are doing,” she said.

It is caused by uncleared mucus at the back of a throat, she told the workshop. “That gurgly sound you hear, well, that person is so deeply unconscious, they’re not aware that that saliva is sitting there – that they are not trying to cough or swallow to get rid of it. But the sound will distress you. So remember that Rachael said this might happen. It’s not distressing Mum or whomever that is.”

Many deaths are gentle but a few are traumatic. In those cases it is often the words of a carer or a family member, even a prayer or a kind word, that make more of a difference than any medicine.

That was the case with a deeply religious woman who couldn’t be calmed until a pastoral care worker kneeled with her and prayed. She died soon after.

“I have never seen anything like that,” said Zielinski. “We [health professionals] can’t do what [family and friends] can do. We are empowering people to think they have a place.”

A pilot of the program over the past two years found 73.9 per cent of participants strongly agreed that they know more about how to support a person in their last months, weeks and days of life, while nearly 70 per cent understood what to do to relieve physical symptoms.

Info: Last Days

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