It wasn't until the final hours of Sue McKeough's life that her husband Alan Bevan was able to find her end-of-life care.

Sue had fallen into a coma weeks prior, but Mr Bevan, 68, felt he was the only one responsible for his wife's care.

"Up to that point, there were no specialists there. It seemed that it was just me caring for her," he said.

"I obviously knew that she was gravely ill, but I wasn't entirely sure what the prognosis was."

Sue was diagnosed with Alzheimer's disease at 49 and died just five years later in a nursing home.

"I had assumed that in a first-world country like Australia, there would be palliative care services available," Mr Bevan said.

"But in my experience, that wasn't the case."

Despite attempts through Sue's nursing home and GP, Mr Bevan wasn't able to find his wife a palliative care specialist — someone who has expertise in providing comfort to people at the end of life — until her last day.

"I had promised … that I would hold her hand to the very end," he said.

"l had done that through some pretty tough stuff. But in those last couple of weeks, I felt I wasn't able to provide the level of care that she needed, nor was I able to get her the care that she needed.

"I found that to be extraordinarily distressing."

Sue McKeough was diagnosed with Alzheimer's disease at the age of 49. ( Supplied: Alan Bevan )

Mr Bevan is now hoping that by sharing Sue's story, he can help to change end-of-life care in Australia for the better.

His experience has helped to inform a new review, published in Palliative Medicine, that calls for patient and carer voices to be prioritised across the end-of-life sector.

"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," he said.

"She told me Sue wasn't going to last more than a week, and it turned out she didn't last eight hours."

Review calls for stronger patient input

The report, which Mr Bevan co-authored with researchers at the Australian National University (ANU), looked at the extent to which consumers help to inform palliative care services, education, policy and research.

Lead author Brett Scholz said despite the philosophy of palliative care being consumer centred — "to give people the best possible death" — the contribution of patient and carer voices to the palliative care sector was limited.

"This review shows we are not meeting policy expectations about involving consumers in how we are cared for before we die," said Dr Scholz, a research fellow at ANU College of Health and Medicine.

"We are missing out on a lot of the benefits of patients' point of view.

"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."

Dr Scholz said although collaboration between healthcare services and consumers was "relatively good" at an individual level (for example, when deciding on treatment or advanced care plans), there was little meaningful engagement with consumers at a systemic level.

"Whenever I ask researchers or people working in services about whether they have partnered with consumers, invariably, the response is, 'They are grieving, they don't have time, they don't want to be a part of this'.

"But then when I ask, 'Well, have you actually asked them?', nobody really has."

Across the health sector, Dr Scholz said medical professionals' expertise was often privileged over the lived experience of patients.

"Consumers are often not really treated as the experts, even though they're the ones living through the condition," he said.

"I'm not saying we need to get rid of the medical expertise, but I'd rather see these things work in synergy, so we're maximising people's experiences … to try and find the best outcomes."

Currently, a lot of patient input was tokenistic, Dr Scholz said.

"Sometimes, people get wheeled out at a conference or in front of a committee to tell their story, but they're not actually involved in a decision-making capacity," he said.

"What I think we really need to do is to ensure consumers are part of decision-making at every stage, and that there is power in that decision making."

Benefits of involving consumers

The review, which looked at 11 studies, found that when patients and carers shared their lived experience with medical students and health professionals, it allowed for a more "authentic learning experience" where people could ask questions without fear or embarrassment.

It also found that the perspectives of consumers brought insights into palliative care that improved research focus, quality, relevance and impact.

"International policy has highlighted the benefits of 'involving users in the design' of palliative care services since the early 2000s," the authors wrote.

"Academics and clinicians might improve the relevance of their work if they are able to more meaningfully partner with consumers in systemic roles."

Dr Scholz said he'd like to see dedicated positions in academia, policy and practice for people with lived experience of palliative care.

"I think at the moment we still value all these other expertise, and we're still not listening to these people," he said.

Dr Scholz said although there were challenges to engaging patients and their loved ones at the end of life, there were ways to support consumer leadership and make space for their contributions.

"There are huge benefits that come when we collaborate with consumers," he said.

"It is never going to be a good experience, but if you have experiences informing the kinds of treatments you offer ... you could make it more comfortable and easier for families who are grieving."

Palliative care improving, experts say

Palliative care specialist Sonia Fullerton said palliative care in Australia had improved in recent years.

"We're focusing less on the actual very end of life and more on integrating into health services and health systems earlier in the patient's course of disease," said Dr Fullerton of the Victorian Comprehensive Cancer Centre.

"I think that's been quite successful. But I would have to say that not every Australian has access to high quality palliative care, which is what we'd like to aim for.

"For example, if you're living in the country, you may have trouble accessing palliative care specialists which are not as widely available as they are in the city."

Dr Fullerton said one area that could be improved was providing medical care for people who would rather die at home than in hospital.

While 70 per cent of Australians would prefer to die at home, only 10 per cent do, she said.

In 2018, Palliative Care Australia launched a consumer and carers register to provide opportunities for patients and carers to contribute to policy development and research.

Palliative Care Australia CEO Rohan Greenland welcomed the ANU review.

"Co-design should be standard practice, where consumers serve as equal contributors to work with policy makers and service providers," Mr Greenland said.

"We've got a new National Palliative Care Strategy that was signed off by all governments in February this year, and that has an emphasis on the consumer voice."

In a statement, a spokesperson for the Federal Health Minister Greg Hunt said the provision of palliative care was the responsibility of state and territory governments, but that the Federal Government provided subsidies for palliative care medicines under the Pharmaceutical Benefits Scheme.

The Federal Government has committed almost $80 million over three years to strengthen the palliative care system, and a further $57 million to improve palliative care for people living in residential aged care.