Living and dying in the place that matters most
Living and dying in the place that matters most
by Natalie PeckThursday, March 21, 2019
On National Close the Gap Day we share the story of The Purple House, which is delivering hope, choice and comfort to remote Indigenous communities.
It’s hard not to get caught up in Sarah Brown’s quiet enthusiasm. The pioneering CEO of the Purple House in Alice Springs has an infectious passion for providing dialysis to people in very remote Indigenous communities.
She and her hardworking “mob” see first-hand every day how a flexible, holistic care model can deliver meaningful benefits to those in remote areas - closing the gap on Indigenous health inequality in a very practical, grassroots way. But of course, there’s always more to be done!
Based in Alice Springs NT, Purple House is a not-for profit organisation that supports remote Indigenous people, who are up to 50 times more likely to experience end-stage kidney disease than non-Indigenous Australians.
With humble beginnings in the corner of Sarah’s lounge room 16 years ago, the Purple House model of care has grown significantly – and is now being replicated country-wide.
“We could never have dreamed we would be where we are,” says a very modest Sarah, who has been nursing in remote regions for over 20 years. “The original aim was to get a single dialysis machine in Kintore (530 km west of Alice). That was the dream.”
“First we purchased one dialysis machine in Alice, just to try and get people well enough to travel seven hours away to the nearest hospital. Then we got another unit for the back of the clinic at Kintore. People’s health just improved so much. Word spread, and we started to get calls from other communities asking for help. So it’s really grown organically.”
Today Purple House boasts 150 staff, 16 small clinics in remote NT and WA (operating 6 days a week, 52 weeks a year), the Purple Truck (a self-contained 2-chair dialysis unit on wheels – made famous most recently for assisting Australian acting legend Jack Thompson), smaller support services in Alice Springs, Darwin and Perth and their first SA clinic under construction in Pukatja.
“Purple House was essentially created because Aboriginal people from remote communities knew that the standard service they were getting from hospitals (which involved leaving their home, family and country to access care) was totally inappropriate for them, their families and their aspirations.
“Patients were either choosing to move to town for treatment and feeling completely miserable and heartbroken and dying really early. Alternatively they were choosing not to start treatment at all and were passing away prematurely on country without any medical care.
“So the Pintupi people wanted to find a model of care that placed their cultural priorities front and centre and providing some agency over their own lives.”
Working together with remote community art centres, the Pintupi elders raised $1 million through an art auction at the Art Gallery of NSW in 2000.
“It was independent money and no-one could tell them how to spend it and so they had a unique opportunity to build a health service from the ground up, incorporating things that were important to them.”
And nothing is more important than ‘Ngurra’!
Ngurra means both ‘country’ and ‘home’ in Western Desert languages, and is the centre of everything for many Aboriginal people.
“Up where we live, Aboriginal people have a strong connection to a particular piece of land. It’s absolutely vital that people who have cultural knowledge of that land have an opportunity to pass it on to their kids and their grandkids. The only way to do that is to be ‘on country’ and with the right people at the right time. That cultural knowledge can’t be passed on unless you are physically in that spot. You can’t read it in a book or share it via skype.”
Remote community members also feel a strong need have the chance to travel back country for ‘sorry business’, funerals and culturally significant ceremonies and will “worry themselves sick” if they can’t make it home.
“In lots of ways our model is a palliative care model,” explains Sarah.
“The beauty of good palliative care is that it looks at individuals and their families and what they need for the time they’ve got left in their lives. What are their aspirations for how they want to spend that time? Who they want to spend it with? That’s very central to how we work at Purple House. It’s just for our mob we are working in two worlds with active treatment in dialysis alongside an overarching understanding that people with end stage renal failure – even with the very best medical care – have a reduced life expectancy.”
Sarah describes being able to help people go home to die on country as one of her “absolute career highlights.”
“Over the years we’ve a managed to get a number of patients well enough to go home on dialysis, only to find that their circumstances change or another condition (like cancer or dementia) deteriorates.
“Because they were already at home, we’ve had the chance to have important discussions with them and their family to plan a time when dialysis would stop. Allowing them to have those conversations and pass away peacefully on country was very, very meaningful.
“Usually that’s been a decision between clinicians, family and everyone else that this is the right time. Then making sure that the last week or weeks of their life is comfortable – free from the arduous restrictions of dialysis.”
“I’ve been around when communities have organised camping trips to take an elder out to her birthing place for the last time and all her family went there too. She could tell them the stories for the last time and sleep out under the stars in a swag. Our primary care nurses out bush and the family all worked together to make sure that person had a comfortable death on their bit of country. That’s such a great honour for us to help make that happen… very powerful.”
Purple House’s work was significantly boosted by last year’s Commonwealth decision to add a Medicare item number for dialysis in a very remote location, which provides $590 for each dialysis treatment.
“It’s been an absolute game changer for us, and for the future of renal treatment in remote Australia.”
“Having dialysis machines available in remote communities gives us so much more flexibility to work with people around how they want to spend that last bit of their life. Sometimes that last bit might last for years or sometimes only weeks. But it’s completely fabulous to be able to help people make those decisions.”
Sarah is quick to point out (still from that same corner of her Alice Springs lounge room) that the Purple House success story belongs to many people – the Pintupi people, the nurse practitioners, clinicians, volunteers who have worked so hard and their other government and community supporters.
But most of all their story belongs to every person they have assisted home for a good life and a good death in the place that matters most to them.
“So many of the stories you get from remote Australia are negative or challenging. This is a hugely positive story… which really challenges some myths about remote Aboriginal communities. It’s essentially a story about people power. How Aboriginal people who had a problem, came up with their own solution and are now really, really proud of what they have achieved,” said Sarah.
“It’s also about just looking after each other better and sucking the juice out of every day you’ve got together.”
Purple House is hosting a two-day conference in Alice Spring (9 April-11 April 2019) to share conversations with like-minded health care professionals about remote dialysis and keeping culture strong. The Conference includes a day trip to a community to see remote dialysis in action! Limited places still available. See here for details.
National Close the Gap Day is on 21st March 2019