Big things are afoot for palliative care in the ACT, not least helping the carers of people with life-limiting illnesses.
Palliative Care ACT has been working on a non-clinical respite centre called The Hub, which is expected to be operating before Christmas after three years of hard work getting it to fruition.
Located in a house in the inner-north, The Hub will accommodate palliative care patients in a home-like environment, allowing their carers - their families, their loved ones - to take a break, to have some respite. It has four suites in which a patient and their carer can stay and enjoy some down time together or the patient can stay by themselves, seen to by staff, while their carer has some time away. Each stay is expected to be a maximum of seven to 10 days.
The Hub is different to a patient being placed in a hospice or a hospital.
They are not there to die. It's not about medical treatment, as such, but about ensuring they are comfortable and cared for while those who usually look after them can attend to other aspects of their lives for a little bit. Without. Feeling. Guilty.
This is about recharging the carer so their loved one may eventually get the death they want.
Palliative Care ACT president Louise Mayo said, nationally, 70 per cent of people faced with a life-limiting illness wanted to die at home supported by their families and loved ones. They did not want to die in a hospital. However, only 14 per cent of people achieved that wish to die at home.
"We undertook some research a couple of years ago to understand why people weren't achieving to die at home and the two things that came through that research were carer fatigue and carer isolation," Ms Mayo said.
"So, The Hub is about trying to address both those issues."
Ms Mayo said The Hub was to sit alongside the "fantastic" clinical care in the ACT. The house will be on six-month trial initially to see how well it works before a purpose-built facility is made to suit the model of care.
"We have so many people requiring respite care now and there is only one respite bed at Clare Holland House," Ms Mayo said.
"And if you're over 65, you can go for respite in aged care facilities, but not many people wish to do that. The Hub is very much a place where you can come and just rest a while until your energy levels are restocked and you can go home."
The Hub is such a novel concept in palliative care that it has led to a research partnership between Palliative Care ACT and the University of New South Wales. Together, they will embark on a three-year research project, which will include looking at how The Hub works and its impact on the wellbeing of carers and palliative care patients.
"There's lots of respite centres but there's no respite centres where you and the carer go together," Ms Mayo said.
Lead researcher on the project, Dr James Connor, a sociologist with the University of New South Wales (Canberra) said it was an opportunity to study a real-life situation to improve outcomes for all.
"No one has done this in the carer space before as a way of helping carers out. What we're coming on board to do is give an evaluation of how effective it is, given this is a world-first intervention to try to make the experience of carers and people near the end of life, a little bit better," he said.
Dr Connor said his research in the past found that a carer's experience was greatly influenced by how they were able to manage the frequent uncertainty around a loved one's prognosis, when it may be months or years before they passed away. The university would continue to research the experience of carers through this new collaboration with Palliative Care ACT
"As a carer, you're often the second fiddle, you're the left-out person when it comes to end-of-life options because, obviously, most of the focus and support is on the person who is dying," he said.
"This is a very difficult position for carers because they put their life on hold. They have that burden, of course, of caring for a loved one, a parent or a partner who is dying which has its own awful, unpleasant, sad, difficult emotions that go along with that.
"But they're also missing out on lots of other things in life like engaging with the community, normal social activities, sport, staying in contact with friends. So it's a very difficult place for carers to be. So, with Palliative Care ACT we will work to identify what the key difficulties might be for carers and help them through this process."
The university would also be working with Palliative Care on policy and advocacy around end-of-life options in the ACT.
"And how we might understand the difficult questions of achieving policy and social change around end-of-life options for people," he said.
Ms Mayo, meanwhile, was excited The Hub was so close to being a reality and to often a safe have for families.
"It will be a place that feels restful, calm, tranquil," she said.