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Canberra Today 20°/24° | Friday, March 29, 2024 | Digital Edition | Crossword & Sudoku

Alan’s ‘distressing’ story inspires palliative care review

AFTER Alan Bevan couldn’t get the appropriate palliative care for his partner in the lead up to her death, it inspired an ANU-led paper highlighting the failings of palliative care. 

Mr Bevan, 68, who co-authored the paper, says his partner, Sue McKeough, was diagnosed with Alzheimer’s disease at 49 and died in a nursing home more than five years later.

When Ms McKeough fell into a coma in the final weeks of her life, Mr Bevan says he felt he was the only one responsible for her care.

“There were all sorts of problems associated with getting a palliative care specialist and finally I got someone only hours before she died,” he says.

“Up to that point there were no specialists there. It seemed that it was just me caring for her.

“The issue was she had no specialist palliative care support in the nursing home. I didn’t fully understand what was happening up until that point.

“I was just stretched emotionally, not knowing what was going on, or what sort of care she should have.”

Mr Bevan didn’t get access to a palliative care specialist until just before Ms McKeough died, who told him his partner was dying in the final eight hours.

“I was so distressed by my inability to get appropriate palliative care,” he says.

“The nursing home staff were bringing in food when she was in a coma.

“I can’t convey how important it was to have someone who understood what was happening, who was able to tell me my partner was dying.

“She told me that Sue wasn’t not going to last more than a week and it turned out she didn’t last eight hours.”

Mr Bevan was asked to join the report after ANU researchers came across his wife’s story.

His experience has since helped inform a review of palliative care that is calling for involvement from patients in all decisions across the end-of-life care sector. The paper is a report of collaborations with patients or carers in palliative care policy, education and research internationally.

Dr Brett Scholz, research fellow at the Medical School, ANU College of Health and Medicine.

Lead author of the report Dr Brett Scholz says how people are cared for in their final days needs a revamp – specifically by involving people who have lost loved ones.

“This review shows we are not meeting policy expectations about involving consumers in how we are cared for before we die and we are missing out on a lot of the benefits of patients’ point of view,” says Dr Scholz from the ANU College of Health and Medicine.

“Death is an important part of life that everyone will go through and using that experience of knowing what it is like to have someone die in hospital or a nursing home could make that situation a little bit easier for others.

“It is never going to be a good experience, but if you have experiences informing the kinds of treatments you offer, the services and what it looks like to die in a hospital you could make it more comfortable and easier for families who are grieving.”

The review suggests patients and consumers should be part of all levels of decision-making processes that health services offer, as well as in delivering education, conducting research, and setting policy agendas.

“At the moment patient involvement is tokenistic and we are recommending real engagement from consumers,” says Dr Scholz.

“When someone we love is dying we look to doctors and think they know best but they are not the experts in our own lives.”

Mr Bevan says he was shocked to discover how ill prepared institutions and medical professionals were around his partner’s end of life care.

“I thought palliative care was something that would happen for people when they needed it,” he says.

“I think that Sue should have had a palliative care specialist from when she was first diagnosed.”

The paper is published in “Palliative Medicine”. Dr Scholz will be presenting the review today (August 1) in Canberra.

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2 Responses to Alan’s ‘distressing’ story inspires palliative care review

Christopher Emery says: 2 August 2019 at 11:19 am

What state are they talking about?

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Canberra CityNews says: 2 August 2019 at 4:28 pm

Hi Christopher,

The paper is a report of collaborations with patients or carers in palliative care policy, education and research internationally.

Regards,
“CityNews”

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