By Yasmin Noone
Australia’s palliative care movement could be in danger of drifting too far away from its grass roots if consumers, advocates, service providers and aged care workers do not redirect it back on course and contribute to the Senate inquiry into palliative care, now underway.
Executive director of Palliative Care Council, South Australia, Tracey Watters, believes that the recently announced Palliative Care in Australia Senate inquiry presents the sector with a ‘once in a lifetime’ opportunity to tell the government all that is good, bad and ugly about the current state of palliative care services.
But, she said, if this opportunity is not seized and the government does not hear the real life stories of older people, their families and friends who have been denied access to vital, quality and timely palliative care services – and the sad tales about the consequences – then the palliative care sector will be at a loss.
“From a consumer’s point of view, there seems to be an inordinate number of barriers to accessing specialist palliative care services,” Ms Watters said.
“Dying is no longer what promotes palliative care…Palliative care is becoming acute care. People are having to get into a crisis situation to get [palliative care] services, which is really juxtaposed to what palliative care should be.
“My worry is that in the growth and development of palliative care as a specialty is almost taking it away from its grass-roots [objective], which is to care for people with a terminal illness and help them make use of their time until they die.
“Here in Adelaide, palliative care [services] are quite well served but there are still an emerging number of people almost being denied access because, again, specialist palliative care services are becoming acute-focused…
“…If we don’t grow that palliative approach from its grass roots then it will simply go off track and loose its essence.
“The Australian Senate inquiry presents an opportunity for us to speak directly to government about the current gaps between the [palliative care] rhetoric and a consumer’s reality.”
Ms Watters stressed the holistic nature of palliative care services and how essential it is for palliative care nurses and staff to adopt the palliative approach to care, rather than employ a “reductionist” approach which separates the spiritual, emotional, clinical and psychological aspects of palliative care from one another.
“A good hospice or palliative care nurse should be able to deliver bereavement care to families. We have to say that palliative care is holistic and have staff that are imbued with all of the skills that requires.”
In an ideal world, she explained, palliative care would be defined as a core specialty and the government would integrate palliative care services right across the health system in all areas, rather than applying ad-hoc and piecemeal funding for individual projects or catchment areas.
And, just as the Productivity Commission recommended in its inquiry into aged care, Ms Watters thinks that palliative care services should be made the core business of aged care.
“We know that people aren’t going into an aged care facility for lifestyle. They are going there because they have high care needs and staff have to be high care staff who are well-rounded in all aspects of care. Let’s not divide care into medicine and nursing. We’ve got to start working together.”
The Senate inquiry, to be conducted by the Senate’s Community Affairs References Committee, has been dubbed the broadest ranging inquiry into the entire Australian palliative care system, ever.
Announced late last year, its terms of reference span all facets of service provision from the factors influencing access and choice to funding and the system’s interface with the aged care sector.
Written submissions from interested individuals and organisations are currently being sought and must be received by the committee by March 2.
Palliative Care Australia is expected to put forward a national submission which will feature state-specific issues.
Each state organisation will therefore provide its own submission to the national peak body, detailing concerns particular to its location.
According to Ms Watters, this is so “the government can look at the Palliative Care Australia submission and say, ‘This is a problem in NSW but it’s not a problem in Canberra. So what can we do to fix it?’”
Over the next few weeks the state peak bodies will hold individual seminars in order to garner community and stakeholder opinion about what the key issues are.
The Palliative Care Council, South Australia, will host a member and stakeholder forum on both Monday 30 January (4-6.30pm) and Tuesday 1 February (2-4.30pm).
At the sessions, the council will make note of attendee’s comments and thoughts about the Senate inquiry’s terms of reference and examine the disease trajectory models that form the basis for understanding the place of palliative care.
The council has also created a list of seminar questions to help guide the forums, enable members to prepare what they will say on the day and, in the case of non-attendance, help members submit their ideas to the organisation in writing before the cut-off date.
“I know [the inquiry] is about the good, bad and the ugly but sorry, [the government] already knows about the good. It’s the bad that has to come to the surface.
“…So you have to tell your story. It’s like voting. If you have an issue, then how are you going to get [your issues] on the agenda for change [if they are not articulated]?
“This is an opportunity to unite to direct change.
“The Senate inquiry for palliative care won’t happen again for decade or more. At the moment, we have willing ears and the only people to ‘get’ the reality [of how it palliative care services really are delivered on the ground] are the people on the ground.
“We need to hear from there so we can provide safe environments for people who are dying.”
For more information about Palliative Care Australia member Senate inquiry forums happening around the country, contact each of the organisations individually using the details below: