End-of-life Doula care.

I'm an end-of-life doula on Kangaroo Island. Living on an island presents paradoxes - we love the isolation from the mainland, but we get frustrated by being isolated from the mainland. We need to accept well-meaning FIFO services that usually have a high staff turnover. We get stuck in the turnstile of having to start our story from the beginning, again, as yet a new face sits poised to take down notes. We appreciate that services are trying their best but despair at the lack of deep understanding of the local context and community.

The 2019/2020 fires showed the community the depths of its resilience, resourcefulness, and creativity in facing problems head-on and supporting each other through the challenging times that followed.

Our health service, like all health services around the country, is stretched and overwhelmed. Staffing is a challenge - GPs and nurses willing to make a life here are few and far between. There isn't enough housing, and the isolation doesn't suit everyone.

So establishing KI Doula Services just became a 'no brainer' really. A local service that rallies local resources needed from the community, to empower the community to look after its own. It isn't rocket science. It's simply about stepping back in time and doing what was done historically when we didn't outsource dying and death to facilities, and we understood that health was more than just medicine.

Working as an EOL doula is immensely diverse, and gives me the privilege of getting to the heart of what matters to people. I have walked around privately owned properties with those wanting to know whether it might be possible to be buried on their own land when they die (it is). The conversation evolves naturally and opens into what they would like to happen as the end of life nears.

I have provided a 'cooling unit' to families who had a person die at home, and wanted to keep them there until they were ready to let them go. I gently guide them to care for their person, to wash them and dress them, so they can hold vigil until they decide, usually two or three days later, to gently release them into the care of a funeral director.

I have witnessed a casket painted by grandchildren about to lose their beloved grandfather, complete with envelopes of 'punkin seeds' and fishing hooks and love letters so he would have something to do 'in heaven'. I have danced with a woman after her hair fell out from chemo, and who wanted to reclaim some sense of control of her life. I've sat with many people as they navigate and craft Advance Care Directives, presented to numerous community groups about end-of-life options, been a companion, a sounding board, a shoulder, a re-arranger of rooms, or an organiser - whatever is needed so that a household can continue to function and at the same time embrace the reality that someone in that household is facing death. My support frees them up to do the thing they specialise in - loving and just 'being' with that person.

As I type I am coordinating support for a relatively young man with early onset dementia. No family. He lives in poverty. His small band of supporters are extraordinary in doing what they can. They want to care for him until the very end. They don't want him to die alone and afraid, even if he no longer recognises them. My role is to gently guide and empower them - not barrell in and fix - but be there for the long haul, walking beside them so they can give him this amazing gift of love.

I've written more than I ever intended, to try and capture the kind of non-medical role that an end-of-life doula can play in the life of a person facing end-of-life. I've only scratched the surface. The job takes whatever shape the client gives it.

I think trained and experienced End-of-Life doulas can have a significant role to play as part of a pall care team around a person, and I would like to see the role become more 'mainstream' and not just accessed by those courageous enough to think outside the square. The Kangaroo Island health service is indeed taking those first steps in accepting the role, which can be funded through the NDIS 'My Aged Care' package but there is still a long way to go. Young people die too, as do those that are ostracised for any number of reasons.

A structured approach to incorporating EOL doulas into palliative care can ease the pressure on the health system, and provide highly personalised and individualised support so that end-of-life wishes might come to fruition for more people.

Thankyou.