Her belief and her concern for the families of terminally ill children – that they shouldn’t have to suffer – are matched only by her disbelief at the apathy of so many who could turn the situation around.
“You can’t change the fact that a child is going to die, but my vision is that the child’s family doesn’t need to suffer unnecessarily … our team works to change their journey,” she says.
Fleming arrived in Australia from New Zealand as a newly minted RN who quickly embraced paediatrics and oncology, observing along the way that paediatric palliative care didn’t exist in Australia.
Sara and the then AMA head Dr Michael Rice took exception to the 1995 Report to Parliament on the care of people who are dying in South Australia for its failure to include any mention of child mortality or paediatric palliative care.
It was South Australia’s gain that she decided things had to change. Undertaking a Masters in Palliative Care through Flinders University, Sara started a paediatric palliative care working party which gained a research grant to interview families that had recently received palliative care. The group published their work in 1997 as The Interstellar Cold; Parents experiences of their child’s palliative care. The process revealed a glaring lack of empathy for the families’ harrowing experiences. Each had suffered from a lack of medical, psychological and bereavement counselling, a situation that eventually led to funding a specialist position at the WCH.
But do things change?
Only last year, Improving End of Life Care for South Australians, a report by the Health Performance Council of South Australia, acknowledged that the Women’s and Children’s Hospital was the state’s only centre for children’s palliative care services. The report said that although WCH served patients across the state and provided a consultant service for non-palliative care clinicians, it was not resourced as a Level 6 service. It currently has 2.1 full-time equivalent positions, with recurrent funding for 1.4.
Due to funding vagaries that last figure is now down to about 1.2. “Our current financial situation leaves us unable to plan ahead with any surety,” Fleming says.
Some specific bequests and fundraisers for the WCH Foundation give the palliative care team extra breathing space. But that doesn’t alter the fact that three part-time nurses and a part-time doctor, an arts therapist, business manager and secretary have to cover a huge area – all of South Australia and the Northern Territory.
They deal with up to 80 families a year, a role which in addition to hospital work, means travelling through isolated parts of Australia, mentoring health workers in remote clinics on the palliative approach, as well as liaising with affected families. Into the bargain, the WCH team coordinates several bereavement groups, bereaved fathers and siblings, as well as running regular workshops for bereaved mothers.
Sara is a peer mentor with the Palliative Care Australia managed National Standards Assessment Program (NSAP). She also works with and counsels practitioners in other emotionally dangerous professions.
She practises what she preaches – “whatever roasts your chicken” is one of her mantras – affirming the need for people to confront and overcome their own fears related to suffering and dying before they will be able to act on another’s behalf.
Sara lets off steam by cycling. She’s currently getting up to speed for the community ride in association with the Tour Down Under, and is a strong supporter of Cycle for Sam, the charity that supports the WCH Paediatric Palliative Care Service.
“I cuss about a lot of things while I ride,” she says, “mainly the apathy of some people who can’t grasp the importance of what we do.
“There are mainly good days,” Sara says, “when you feel that you’ve made a difference. In palliative care, you quickly realise that there are very few dills involved … you’re working with really good people.”
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