Turning the lens: Palliative care through the eyes of a carer

Categories: Care and Featured.

The film crew pulls up to the double-storey house nestled in the middle of a wide, leafy street in the outer suburbs of Melbourne, Australia.

It’s a big home. Warm and inviting, the kind of house most Aussie kids dream of growing up in.

The crew unload their gear from the boot of the car, taking note of the lush, well-manicured garden and the set of sagging wooden steps leading to the front door.

Before they have time to knock, a middle-aged man greets them. It’s hard to look past the heartache written all over his face, but there’s an easy, gentle confidence to him too.

The man’s name is Simon Waring and he is ready to talk.

‘When you realise how uncertain life is, you do begin to appreciate the value of family and friendships. You really don’t know what’s around the corner.”

Simon’s son, Marmaduke, was diagnosed with neuroblastoma at just fifteen months old. Almost immediately, Simon became his full-time carer.

Marmaduke received early intervention through chemotherapy, spending endless months in and out of hospital. Although declared clear of cancer after his chemotherapy, Marmaduke had a serious relapse. He died three years later, just five weeks after his mother succumbed to breast cancer.

It’s Marmaduke’s story that Simon is commemorating for the cameras, reflecting on the impact palliative care had on his son’s quality of life at this time. Simon says that the pain relief given to Marmaduke at home enabled him to live comfortably during his final  weeks.

Simon’s words are crisp, purposeful and wrenchingly raw.

“The end of his journey, to have him at home in his bedroom with all his own colours, his own toys, his sounds, have his brothers climbing in an out of his bed – it was as normal an environment as he could possibly have.”

Produced by Moonshine Agency in 2015 as part of the Little Stars campaign, Marmaduke’s Story raises issues most viewers have probably considered in the abstract, but have never had to personally endure.

What does it mean to have a “good death”? What type of decisions should a terminally-ill patient be able to make about their own quality of life? And what if the terminally ill patient is a child? What then?

It’s powerful to unpack these unthinkable questions through film. No other medium extends the same opportunity to see, hear and react to the human experience quite like moving pictures do.

Marmaduke’s Story might only be 8 minutes long, but the film makes the difficult decisions carers and loved ones of terminally ill patients contemplate, feel achingly real.

The strength shown by Simon while caring for Marmaduke is truly inspiring. His experience stays with the viewer long after his face fades from view.

Which is why, close to a decade after its release, Marmaduke’s Story continues to be shared in hospitals and universities around the world, helping to educate students and staff about paediatric palliative care.

We know that facts don’t easily change minds or opinions. If they did our world would probably look very different.

As such, impact filmmakers use storytelling to elicit emotional reactions from audiences. If a film can centre its message around a person’s sense of identity or values, it will go a long way towards creating lasting, positive behavioural change.

The impact of Marmaduke’s Story  lies in its simplify. There’s no grandiosity or saccharine film techniques.

Simon speaks directly to camera, recounting the final, treasured moments he had with his young son. His positioning on screen feels intimate and familiar, like the viewer is sitting in his lounge room with a steaming cup of tea and a few shortbread biscuits.

This is just a father in a green t-shirt, speaking candidly about the son he adored and lost too soon. There is a heavy emotional strain and deep vulnerability, but there is hope too.

Simon –and the documentary more broadly – wears his agenda on his sleeve: everyone must have access to the care they need to live well until the very end.

Moonshine Agency has spent the past 12 years making documentary films that have enhanced public understanding of palliative care by focusing on not only the patient experience, but the carer experience as well. To learn more, about our work, please visit www.Moonshine.Agency

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