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A Dying Wish Should Be Granted Sooner Rather Than Later, Experts Say

The first time Alan Bevan was told his partner was dying was on the day of her passing.

Sue had been diagnosed with Alzheimer's disease six years prior, when she was 49. Alan remembers feeling the weight of the diagnosis -- and the years that followed as her carer.

"I made a commitment to hold her hand and walk with her through that journey, and it proved very challenging," he told 10 daily.

"But I had wrongly assumed that in a first-world country with a well-advanced medical system that at the end of her life she would be well looked after."

Sue McKeough was diagnosed with Alzheimer's disease at the age of 49. Photo: Supplied

Alan admitted his partner to a nursing home five years after her diagnosis. While he started to notice her decline, he said the nursing staff were not resourced to deliver palliative care.

"The people bringing in food or drink continued to bring in trays when Sue was comatosed," he said. 

On another occasion, he remembers being asked by a nurse whether to deliver his partner Morphine.

"I became aware that I was responsible for Sue, because there was no one giving her the care that she needed," he said.

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Palliative care is designed to care for someone  who has a life-limiting condition and aims to comfort, not cure.

The World Health Organisation also refers to improving the quality of life of patients' families as they approach death, though this is not always limited to their end of life.

According to Professor Jane Phillips, Professor of Palliative Nursing at the University of Technology Sydney, this requires a holistic and individualised approach.

"For someone whose needs aren't complex, it might be provided by their GP, family, community nurses or home care workers," she told 10 daily.

"But if someone has more advanced or complex symptoms, they'll often need the input of a specialist palliative care team."

Photo: Getty images

Today, specialist palliative care services in Australia are provided in hospitals, residential homes and outreach care, and are largely funded by state governments and territories.

But with the growth and ageing of the country's population -- and an increase in chronic diseases -- the profile of those requiring such care is changing.

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'It Took Far Too Long To Get Someone To Care For Sue'

By the time Alan managed to organise a palliative care specialist for his partner Sue, she only had hours left to live.

"The specialist was the first person who said to me that Sue was in fact dying. Even though that wasn't what I wanted to hear, it was useful to be told what was happening," he said.

Sue died later that day.

"I felt that having made a commitment to care for Sue throughout that I had fallen at the last hurdle -- that I didn't get her the best possible care in the last week or two," he said. 

"At the end of the day, it just took far too long to get someone who knew what they were doing to care for Sue.

"What I have learnt is that good palliative care is critically important, and that as a system, there are circumstances in which it is not well handled in Australia. "

Alan's experience has helped to shape a new review calling for patient's and carers' voices to inform changes to end-of-life care.

The paper, led by Australian National University's Dr Brett Schozl, looked at 11 studies and found that sharing experiences with medical students and health professionals fostered a more "authentic" learning experience.

"Experiences like Alan's are going to be quite different for a range of individuals," Scholz told 10 daily.

"It's a difficult part of life, but unless we learn from a variety of experiences, then I don't think we're providing the best care that we possible can."

Scholz believes this should be translated to all levels of decision-making, to educate others, conduct research and set policy agendas.

Calls For A Community-based approach

In Queensland, there is a growing movement towards 'public health palliative care' and discussions about how society can help to support those managing death and dying.

Palliative Care Queensland recently launched a 'Compassionate Community Conversation' series that facilitates free discussions in 15 locations across the state.

"All of us are affected by loss, dying and grief at some point, so we need to look at the bigger picture," CEO Shyla Mills told 10 daily.

"People are having these conversations but they're not being as open with health professionals, so we need to start shifting the focus to how we work with the community to keep these conversations going."

Mills agreed this extends to talking with both patients and carers.

"Excellent palliative care is about first working with the person and their family to identify the goals of their care, and then having the services and support networks to deliver them," she said.

This could involve granting a terminally ill person their final wish -- a heartwarming initiative the state government launched last week with Palliative Care Queensland that will see a donated ambulance take patients who require constant care on journeys before they die.

Mills said she has been blown away by the response to the initiative across the world.

"It's a simple idea and all of society can do this," she said.

"Hopefully people can start to see how beautiful it can be to work with people at the end of life to achieve their wish."

Featured image: Getty

Contact the author ebrancatisano@networkten.com.au