A friend for life – even as death approaches
‘Advanced recreational officer’ Jane McNamara spends the final days with palliative care patients and says the intensely personal journey she often takes with patients is “the most rewarding work I have ever done”
JANE McNamara steps into the empty room and stands beside the empty bed. Closing her eyes, she holds her own private, personal moment’s silence in respect for its last occupant, now gone forever.
And she knows that, before too long, she’ll be doing it all again.
Jane’s official title may be ‘advanced recreational officer’ for Gold Coast Health’s palliative care unit, but her job is as both memory maker and memory keeper.
She has helped hundreds of patients make their final days some of their best, and she holds them all in her heart – even dreaming of them at night.
“Sometimes I wonder when my own time comes to die, whether they’ll all be there waiting for me. Holding that vigil like I have for them,” says Jane.
“It’s a lovely wish, and one that I hope comes true. Each one was so much more than patient to me, the time we spend on this ward is intensely intimate and meaningful.
“It can be heartbreaking and it can be joyous, and it’s the most rewarding work I have ever done.”
While she’s held a number of different roles during her time working for Gold Coast Health, Jane believes each job was a step along the path to this position, the place where she says she truly belongs.
Indeed, she holds a special role within a special team, one that has been nationally recognised for its collaborative approach. The unit of doctors, nurses and allied health professionals have become known for their passion for world-class treatment, community education programs and pursuit of research to improve the experience of patients. Like a one-woman makea-wish foundation, part of Jane’s role is to grant as many of her patients’ desires as possible … although she says she is restricted not so much by budget as by time.
But she says focusing on the end stages of life has made her realise just how great even the smallest pleasures can be.
“I had one patient who was on an all-fluid diet as part of his condition, but I found out he really wanted some Fruit Tingles and lemonade ice blocks. The next day I brought them in and the look on his face … it was like he won the lottery,” she says.
“He was just overjoyed, it’s so simple but so meaningful.
“Our patients are not interested in going skydiving or swimming with the dolphins, their time is limited and their energy is low – but it just means that all of those little things mean so much more. It puts everything into perspective … how important it is to feel the sun on your skin, to hear the birds in the trees and to hold someone’s hand.”
The palliative care unit at Robina Hospital was created with exactly those pleasures in mind. The rooms open on to a courtyard with a fountain, trees and lush gardens, with beds able to be rolled outside.
On the day of our visit, there is gentle music playing and the smell of freshly baked scones as patients, family members and even staff gather in quiet groups on the warm spring day.
Jane says this ‘scone therapy’ is one of her most effective treatments, with the aroma enticing even those who are bed-bound into the outdoors.
“Everything is about purpose and pleasure, putting meaning and magic into these days,” she says.
“When I first applied for this job, I was asked how I envisioned this role and I said that I know I can’t change their illness, but I can change their journey.
“Sometimes that’s just through talking to the patients, sometimes it’s by baking scones or sometimes it’s helping them come to terms with the reality of what is happening.”
And sometimes Jane’s simple tasks can carry huge emotional weight.
She’s organised weddings on the ward, birthday parties and, most important of all, helped her patients with their legacy work.
She says not every patient is ready or willing to talk about their life’s legacy as it takes real acceptance that they are going to die, but for those who can, it provides huge comfort for both the patient and their family.
For Jane, it is simultaneously the most rewarding and heartbreaking part of her job.
“I had a young mother in here, her son was just nine years old, and her legacy work was writing a series of cards for him to open throughout the rest of his life,” she says.
“She covered his birthdays, his Christmases, his graduation and even his wedding.
“It was an incredibly emotional experience for both of us, but it gave her so much relief to know that a piece of her will stay with her son into the future.
“As we neared the end of the cards, she could no longer write so she was dictating it to me and we would cry and laugh together.
“She passed away two days after we finished the last card. She knew her work here was done and she could truly rest in peace.”
The magical moments Jane has experienced in this job are almost overwhelming.
There’s the time that Jane, passing by a room with her trusty camera in hand, caught the last kiss between husband and wife on film, the time she made a Melbourne Cup fascinator for an elderly woman’s teddy bear and was rewarded with the first smile they had seen from the patient since her admittance, the surprise party she helped a patient plan for his wife …
But there was one patient who almost broke her own heart.
“He was a young father and so handsome, his wife was beautiful and their two children were just gorgeous,” she says.
“They were like this perfect family … but he was dying.
“The children were about
The time we spend on this ward is intensely intimate and meaningful
seven and nine and so loving, we really bonded – they felt safe with me. They even told me one day that their mum was going to take them to the beach, but they said they would rather go to the hospital. That’s exactly the kind of environment I want to create.
“The kids and I helped make a special blanket for their dad, it’s something we do with a lot of patients and families because it’s simple, soothing work and at the end you have something the patient can use.
“But the children asked me what they would do with the blanket when their father dies? I said they could take turns wrapping it around them like their father’s hugs. The both nodded, and then the boy said, ‘or we could use it to dry Mummy’s eyes when she’s sad that Dad’s gone’.
“Later on, their father wanted to hold a special ceremony for his family, he bought them each a piece of special jewellery and wrote the words he wanted to say.
“His brother was meant to read it but he was too emotional so I read it for them. Then each of the children received their jewellery and he had his last dance with his wife.
“That was an intensely beautiful but emotional day.”
Jane says after that patient died, she struggled with her own grief – deciding in the end to see a counsellor.
“I told the story and the counsellor started crying! That’s when I realised that my reaction was okay. This job can be tough because we’re not shutting off the emotions, we’re turning them on to connect with people and help them more.
“I’ve learned to practice plenty of self-care to manage, I get regular massages, I try to eat well, I exercise, and I spend time with my husband.
“I try to be happy on the ward because that’s what people need, it’s not about me … I need to be the shoulder they can lean on, even though I’m not a counsellor. I’m just someone to talk to, but my only job is to listen and not add to the burden.”
Despite the incredible work she does, Jane is adamant that there is nothing special about her as an individual, but rather the entire palliative care team – as well as Gold Coast Health itself to fund and see the value of such a position as hers.
Jane says from consultant doctor to cleaner, the entire ward works together for benefit of the patient.
Indeed, during our visit, one of the cleaning team helps a patient through the doors and butters a scone for him before returning to her work. And it doesn’t stop there.
“When we lose a patient, we have a special handmade blanket that we cover them with. Then the team walk besides the bed as it’s taken to the morgue. We never stop caring.”
And then, of course, there
It can be heartbreaking and it can be joyous, and it’s the most rewarding work I have ever done
is Jane herself.
“Every time we lose a patient, I go into their room and have a quiet moment to remember them. I want to create that space for them before the next person comes in.
“Every single patient is important to me, in some ways I am their memory holder.
“Maybe that’s why I dream of them … I just want to see them again.”