Palliative care nurses see us in our final hours — these are the life lessons they’ve learnt

Anne Myers was once confused and shaken by death.

After more than a decade as a nurse, including in hospital ICUs, her mother died.

“I’d seen a lot of deaths in my nursing life, but it was the closest human to me that had died,” she said.

“It kind of sent me down a ‘oh my god, I don’t know what’s happening to me’, this grief I’m experiencing.”

Soon afterwards, she became a palliative care nurse.

“I ended up just going down the path of ‘what is death, what is death and dying all about?'” she recalled.

More than 15 years later, here’s what she and other palliative care nurses have discovered on how to die well and live well.

Dead people visit you before you die – and if that happens, go with it

Anne-Marie Jackson has been a palliative care nurse for 26 years but began her medical career 40 years ago in the UK at a time of high fear and anxiety.

“Just when HIV and AIDS had come out,” the Irish-raised nurse said.

“I’ve seen so many deaths, and not one has been the same.

 

“But you know, when death is imminent, some things, there’s some things that happen.”

One of those things can be feeling, sensing, hearing and even seeing the presence of others, who aren’t physically there.

“People will see their dead relatives in the room,” she said.

“And, you know, families will go and tell them that they’re not seeing them. And I’m like, well, they actually probably are seeing them, because … it happens quite a lot.”

Ms Myers said in her experience it was common and could be linked to the delirium that often sets in shortly before death.

“Within that delirium they will hallucinate, and see family members that have died,” she said.

“They start saying ‘Mum, mum’ and they’re 90.

“We always say to the family to support that, because whatever they are seeing, it can be a source of comfort for them. That they are going to meet whoever they haven’t seen for a long-time.”

Palliative care nurse Marita Rees said her own brother saw the presence of a long-dead family member in the room just before he died.

“It was quite amazing, because the person that he saw and what she said she was doing, it was just so true to what she would have been doing. It was almost a preparation type thing.

“You also see a lot of people hold on to life.”

At the end, some patients hold on until they’re ready

In her decades of nursing, Marita Rees has not only seen patients visited by the dead in their final moments — she’s seen terminally ill people who should die within the week or the month hold on much longer than doctors expected, usually for birthdays or anniversaries.

“Many actually end up happening [die] on Christmas Day, because its almost like they have held on for Christmas,” Ms Rees said.

“Definitely people hold on for people, family that are coming, travelling from somewhere else [to say goodbye].

“And then we’ve also seen people let go, when someone is not there. Like when someone is keeping vigil, and they leave the room just for a moment, and they’ll go then.

“I feel like I see it with mothers and their children, and it is almost like mothers are mothers till the last breath, even though their children might be 50 or 60.”

 

Ms Jackson teared up recalling how one man apparently refused to die until he had said goodbye to specific loved ones.

“We had a young gentleman … unconscious for nearly a week… and his hand it was like a rag doll. It would just flop there,” she said.

“And I remember saying, you know is there anybody, is he hanging on for something else, anything, because he’s hanging on for something?

“And they say nobody. Everybody has said their goodbyes.

“And I said, were there any pets? And she’s like, ‘yeah yeah, we got two dogs, two gorgeous dogs and they were his life’. And I says ‘go get the dogs’.

“The two dogs came in, and the two of us cried — this is no word of a lie – he lifted his hand and put his head on the two dogs’ heads. And he died within the next half an hour.”

Beautiful things happen – but people don’t change

The trio have cared for literally thousands of dying people, and while many deaths are sad, people are capable of extraordinary beauty when time is short.

Ms Myers said for some, it provided a focus for their love.

“It can be a good thing for families. It can bring them together. They are in room and sharing stories,” she said.

“Things like parents [who are terminal] writing out individual birthday cards for their kids until they are 18, or making videos.

“And the amount of women that have left their partners that come back and nurse them to their death. I mean what a generous act. It’s extraordinary.”

 

Ms Jackson said the love she had seen had surprised her.

“Sometimes it’s like the Aussie battler that comes to the party, and they care for their loved ones at home,” she said.

“I’ve seen sons with no women there, caring for their mother so beautifully and you are like ‘oh my god, they are able to do this’. Absolutely phenomenal.”

But the trio agree a bitter, selfish or angry person doesn’t suddenly become warm, kind and generous.

Ms Myers said people didn’t change who they were at their core on their death beds, and people around them didn’t change dramatically either.

“Some people self-reflect a bit,” she said.

“But the dynamics don’t change.”

Ms Rees agreed 180-degree turnarounds are the stuff of Hollywood fiction.

“It doesn’t happen,” she said.

“And often people don’t get the opportunity to change. It’s too late. They’re already wired the way they are.”

Live your life now

The nurses have all truly seen that life is beautiful and fragile, but sadly too many people wait too long to live it.

“Life is short. Life is precious,” Ms Myers said decisively.

It’s a sentiment she carries in her own life, where she’s working less, spending more time with her horses and writing a book.

“We have so many people that come onto our program, that are 66 years old. And they’ve got the caravan in the driveway, ready to hit the road for their retirements,” she said.

“Worked hard all their life and get a cancer diagnosis. It happens a lot”.

 

Ms Rees recently walked the centuries-old Charles Bridge in Prague – something on her bucket list.

“My advice for living is to absolutely seize the day,” she said.

“For me it’s about prioritising and doing things that are on my bucket list, and I’m looking forward to doing more in the future.”

Ms Jackson agreed and encouraged Australians to break down the taboo around the topic of death and planning ahead for it.

“How many people have got a will? Or if you do, have you discussed what you would like done if something happens suddenly?” she asked.

Ms Myers began her career in palliative care trying to work out death.

So has she?

“Now that I’ve seen what death looks like, I’m fine with it,” she said.

“I mean a cancer diagnosis and the treatment … that’s pretty tough.

“But I know, the moment before, if you are surrounded by the people who love you and you are getting good care it is a beautiful way to go.

“It’s not something to be frightened of.”