Honouring his final wish: a local journey through end-of-life care

Brett Gardiner was a true gentleman with sparkling eyes - the kind that always looked as if they were smiling.

You'd never have guessed the pain he was concealing behind them.

And he wasn't one to talk about his health issues.

"People look at you differently when they know," he'd say.

He'd been battling and defeating cancer in one form or another for the past 30 years and had become a master at hiding the pain.

But things were looking up last year - the love of his life had finally agreed to marry him after 23 years of persistent requests.

Karen and Brett were married in April 2018 in front of close friends.

Soul mates: Karen and Brett Gardiner

Soul mates: Karen and Brett Gardiner

Noone could have possibly known then the sore throat which had been troubling Brett since February was a warning sign of what lay ahead.

The sore throat persisted despite doctors' nonchalance.

After visits to an Ear Nose and Throat specialist for a biopsy, and to the Coffs Cancer Institute, Karen and Brett booked a day trip down to Royal North Shore for an evaluation.

"We went for a day and stayed for 60," Karen said.

"They could tell before they even operated that it wasn't going to be a good outcome."

Brett was booked in for non-invasive open-heart surgery before he could go under for the laryngectomy to remove the squamos cell carcinoma which had embedded itself in the fold of his voice box.

He was in surgery for 20 hours, and came out without a voice.

But in true form, Brett was up and about in a few hours after coming to.

"The nurses couldn't believe it because noone does that. He was just such a determined person," Karen said.

"He just wanted to make everyone laugh and be happy."

The pair spent last Christmas in hospital, but Brett managed to make it home to the Nambucca Valley in time for New Years, albeit 14kg lighter.

"Everyone said 'you must be happy to be home'. But we weren't, because everything had changed. He no longer had a voice," Karen said.

His scar tissue made it impossible to use an electrolarynx on his neck; he had a tube attached to the electrolarynx which he placed in his mouth, and a white board. Karen also learned to lip read.

"It took us a long time to get his mojo back," Karen said.

Brett no longer had the energy for the long walks that were a feature of their lives before.

But we just got back to living. And we never forgot to appreciate each other - that's what a serious illness does.

As far as they knew, Brett was again cancer-free.

But in July he developed soreness under his chin and jaw and was sent for a CT scan.

The cancer was back, and this time it had wrapped itself around his carotid artery.

Brett was again put under for immediate operation.

"But it was too big, too aggressive and couldn't be removed," Karen said. "And he couldn't have radiation or chemotherapy because he'd already had the maximum allowable, previously."

After so many days in hospital, Karen and Brett vowed there'd be no more. Like 70 per cent of Australians, Brett's wish was to die in the comfort of his own home.

Unfortunately, only 10 per cent of those who would prefer to pass at home get to do so, according to reports released by the Productivity Commission into social health reforms.

And without the support of both the Macksville Palliative Care team, the ladies from Silver Chain, and their family, who were on a rotating roster of care, Brett would not have been able to either.

"It was fantastic being at home. We could eat lunch, we could go out on the deck and watch the birds. We could smile and cry here together," she said.

We were so lucky to have that time together to grieve and say goodbye.

Karen said the Macksville Palliative Care team visited every day to check on medication.

"There were so many medications - the sheer amount was mind-boggling," Karen said.

"But the team were very good and very kind. A doctor came every fortnight, but was also available over the phone at any time.

"We're very lucky here on the Mid North Coast to have access to two palliative care doctors."

The local chemist provided another vital service by doing home deliveries.

Because of Brett's high tolerance to medication, he needed to be assessed every week.

"We'd just get in control of the pain and it would go up a notch," she said.

"And the worst part was he couldn't scream out because he didn't have a voice."

In the end it was decided to put Brett in a palliative state even though he wasn't palliative because the pain became too immense.

A hospital bed was delivered and set up in their lounge room.

"He so desperately didn't want to go back to hospital - he'd spent so much time there," Karen said.

"When the bed came he was not very lucid - he gripped the rail, panicking because he thought he'd been transferred to a hospital. But then he heard our clock chime and the birds outside and just instantly relaxed, knowing he was at home."

Not long after the bed arrived so did the Silver Chain nurses.

"They were just so wonderful. And they accepted our wishes to not go to hospital," Karen said.

"A registered nurse from Silver Chain would come late afternoon or evening. They showed us how to draw up medication and instilled confidence, talked in easy to understand terms, never in a rush, and stayed until everything was sorted. They also offered Facetime when we were unsure.

"And when we were exhausted a registered nurse stayed overnight, allowing us a much-needed rest.

"Sometimes when they would arrive Brett would be in distress - so naturally I would be too. But they were so calming.

It was the difference between being in an ocean without paddles.

"One night will always stand out for me. He'd lost the ability to swallow. The Silver Chain Nurse came in and said 'I will not leave you until he's down and settled'. She even went to Macksville to get drugs. And when she left she gave us her number so we could call her if we needed."

On September 29, the day Brett passed away, the Silver Chain nurses still paid a visit.

"She turned up and said 'You did it!' This is what you wanted - for him to die at home," she said.

Karen is glad to have honoured Brett's dying wishes.

She hopes her experience will highlight to others in the community that support services are there if they want to make the same choice.

"And I wanted to recognise those wonderful people. We would not have been able to complete our journey of my husband passing away at home without the support of Silver Chain and the palliative care team.

Karen is also grateful for the way the community rallied around her in her time of need, with care hampers, meals, flowers and chocolates.

"When things like this happen your world shrinks," she said.

"It was so overwhelming the generosity of neighbours. They were so kind - people I didn't even know came to offer their help."

About Silver Chain

Silver Chain's Last Days Of Life is a home support service available to people of all ages, who are in the final stage of a life-limiting illness and wish to die at home, or stay at home for as long as possible.

Nurses are available 24 hours a day, seven days a week. They work with GPs and community nurses to provide qualified and reliable support in the home, including:

  • a daytime visit by an assistant-in-nursing to provide daily personal care and/or respite for carers
  • an evening visit by a registered nurse for clinical care and support
  • overnight support by a registered nurse who can provide clinical advice and support via the phone or video link (on a video device provided by Silver Chain).

Your Local Health District community or palliative care nurse or GP can refer you to the program.

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