Royal Flying Doctor Service highlights sorry state of palliative care access in remote areas
Royal Flying Doctor Service CEO, Martin Laverty, delivered the following speech at the launch of the Dying to Talk in the Bush research project earlier this week.
In the middle of this year, the Flying Doctor published research conducted with health consumers in remote and outer regional Australia – those who traditionally rely on the Royal Flying Doctor Service for access to care.
We asked the question, ‘What is the most important issue to you right now, around your health?’. And it won’t surprise you the number one response… was access to healthcare.
I was very pleased we were able to conduct this survey with the help of our friends, the Country Women’s Association (CWA) and National Farmers’ Federation (NFF). The CWA, NFF and ourselves weren’t surprised that access was identified as the central issue; and palliative care are was prominent in that response. When thinking about access, palliative care was very much on the mind of country Australians.
In the wake of that survey, I asked our senior medical officers who work in remote Australia: What’s the extent to which we at the Flying Doctor are involved in palliative care services? And what’s palliative care like in country Australia?
The response I received was silence. For those of you that know country GPs they are not usually shy and retiring, so I had to probe a little deeper because I understood the silence actually meant ‘Martin you’re asking a silly question. There is no structured palliative care in parts of remote Australia’.
Our medical officers said our bush hospitals do a great job and particularly if you’re somewhere like Broken Hill where Sarah and John Wenham are experts in palliative care and they’ve made things happen. But not everyone is lucky enough to live somewhere, where – by good fortune – a palliative care expert has decided to locate themselves.
The medical officers replied to my question on what palliative care is like in country Australia by saying we move patients around.
In fact, the thing we do most with those in the final stages of their life is we manage the disruption of having to leave the bush to go into the city to receive access to palliative care. Health professionals were saying they were actually managing the dislocation that is the reality of dying in parts of remote Australia.
Hoping for some better news I went to the academic literature and I got lucky. I found a study published by Melissa Jensen in February of this year which found there has been a sum total of only 13 studies of palliative care in remote and outer regional Australia. I was actually impressed that there were so many … but when you think about it, 13 studies means we don’t really understand the nature of palliative care in the bush, if there is only that level of academic interest in it.
There was one theme common to each of these 13 publications; the word hardship. Hardship is not a word you encounter every day, but the researchers were saying for those in the final stages of life, to live in remote and outer regional Australia is, in fact, to deal with the hardship of having to leave your home, of having to leave your community, to go into a metropolitan region to be able to access the care you might need.
Part of that research spoke of a snapshot of 500 people from remote Australia receiving their cancer care. And of those 500 people, a majority said they would prefer to forgo their cancer treatment to instead be at home to die… Six of seven women who had gynaecological cancers said they had chosen to die and forgo their cancer treatment; to instead be at home rather than face the dislocation to themselves and their families to be taken out of their home to be placed in the city.
It’s not too big a stretch to say that in country Australia people are choosing to die sad deaths without access to health care that those in the city take for granted.
There is some good news out of this academic research. There are some pointers as to what works. For those who know John Wakerman, a champion in rural research circles, one of his studies in 2014 found that the respite centre in Alice Springs that is providing day access for people requiring palliative care is working effectively. And from a big catchment area, people are benefiting. Respite works. We also know from a study in 2014 that providing GPs and GP practices with extra training (they are the front line of many health services in remote Australia) – that works. And what a simple intervention it is to provide that extra capacity.
But overall the literature is telling us that it’s pretty sorry state when it comes to the network of palliative services in remote Australia. I’ve been reflecting on what the Royal Flying Doctor Service could itself do better.
I was delighted when Palliative Care Australia approached us to think about how might we be involved in helping the uptake of care plan discussions, or even before that stage, initiating those very important discussions that our doctors, our nurses, will have with patients in remote areas about planning for those final stages of life.
So today we are able to announce that with the very generous support of the Commonwealth Department of Health we are undertaking a research project over the next 12-18 months in different parts of remote Australia, where our clinicians and RFDS staff will be talking with their patients about the potential to undertake formal and informal paths of care planning.
We are also going to do something that I think is very important. We’ve decided through this project that we should be able to map the existing care pathways to palliative care services for remote areas. We know in the bush that one size never fits all and that in different parts of our great land there are good, average and bad pathways in access to palliative care services. We are going to map that gap, if you like, and when we map the gap of the good and bad access to palliative care services in Australia, we’ll think what can the Royal Flying Doctor Service do. If you think about us, we are in fact a platform for delivering services into remote Australia. It may be that there is a greater role for us to deliver services, but I think more likely we’ll want to form deeper partnerships with others to be able to extend palliative care services.
We need to be able to lead a discussion with the wider community about thinking and talking and end-of-life care planning.
For those of you that might know Lighting Ridge, there is an extraordinary community initiative in that town. The funeral home, the traditional funeral parlour which you might see in the city, in Lightning Ridge is voluntarily run. It’s a community funeral home. The people of the community have recognised they won’t have a commercially sustainable service, so they’ve got together and they provide their own funeral services.
I’ve been reflecting on the nature of voluntary funerals. For those of you who have been through bereavement or have lost someone close you will have experienced, if you are lucky enough to live in a community with deep roots, someone will have knocked on your door and said here’s a casserole. To my mind, wouldn’t it be better if the casserole arrived when someone is in those stages of coming towards the end of life so that we are able to better engage before someone dies and we can talk about what is the most natural thing in the world – dying.
I think if we look at the community notion of coming together to help out at death, how can communities themselves get together to help out more during life?
And I think that’s where the Flying Doctor mapping palliative care pathways in remote Australia is going to have to recognise that it won’t always be doctors and nurses and health professionals that will be best-placed in the bush to help; that in fact in many cases it will be the very community itself.
Mr Laverty’s speech has been lightly edited for brevity and clarity.
To read more about Dying to Talk in the Bush click here.
Dying to Talk resources can be found here.
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