We all die. That truth is inescapable. But in Central Australia, dying is very different.
Here, Aboriginal patients stack one life-threatening diagnosis on top of another, often starting in childhood and too often involving preventable conditions. Consider the following: Rheumatic heart disease affects little kids in remote communities, who may have been running round playing football before the sickness struck but afterwards, because of the infection, their heart is permanently damaged and playtime stops. Heart valve surgery, in young kids. Heart failure in teenagers. Kidney failure in young people. Some need dialysis from their 20s, or 30s. This means leaving home and coming to town, maybe living away from family in a renal hostel, and for many this will be for the rest of their lives. Then there is lung damage, bronchiectasis, caused by chronic infections in childhood, and often made worse by the virus HTLV1, which is endemic to Central Australia. Lung disease can mean being on oxygen at a young age and trying to figure out how to still have a life - despite being attached to an oxygen concentrator, and chained to a power point, then dying of respiratory failure in your 30s or 40s. And it is widely known that diabetes is killing Aboriginal people limb by limb, damaging eyes and kidneys along the way.
These are the patients who need palliative care in Central Australia, along with their heartbroken families. Statistics about “closing the gap” come to life – they have faces, names, stories, a sense of humour. They are people who want to live and are amazingly resilient. Beautiful older people with precious cultural knowledge, whose leadership is still needed by their communities, young people with all their lost potential, and parents leaving children and partners behind.
Talking about death and dying is difficult. It’s difficult for us as health professionals because it seems wrong for people to die the way our patients in Central Australia die, so it feels like we should try harder to get them more time. Palliative care is about accepting dying and planning ahead, but what happens here is hard to accept. In fact – we should NOT accept it. And it’s difficult for our patients because they are trying so hard to survive.
When we talk about dying (“finishing up” – the “dying” word is not usually appropriate), we balance hope and support for the person’s struggles, with the need to make decisions about treatment, and start to address “what ifs.” So maybe next time they get sick, everyone (patient, family, and clinic staff) may decide it is ok not to come back to town in the doctor plane, but to stay on country and die there. Is that possible? Or next time they are retrieved, rather than going to intensive care, the sick person can come to the Comfort House, so palliative care can look after them.
As I write this, I remember so many people who we have looked after in our palliative care facility, the Comfort House. Though I can’t tell individual stories, I can share some things I have learned that make a difference for our Aboriginal in-patients.
- Relationships and reputation
Getting to know someone before the really hard conversations makes a difference. But too often we find we already know them - we have looked after their sister, their cousin, their father.If we have made them and their family feel safe and heard in those difficult moments, it will make the difference as to whether they will accept us now. Also, making sure that we are culturally safe – providing bush medicines, accessing ngangkaris (traditional healers) and having regular smoking ceremonies to clean the facility, assures people they will be respected.
Making sure there are language speakers around, who can board with the patient, using Aboriginal Liaison Officers (ALOs) to translate important medical things and to explain to us what is worrying the person can all make a difference. So too can finding relatives to come and visit or having music in languages (CDs of beautiful gospel music from many communities in Central Australia) to play to people who are on their own. Homesickness is a terrible thing when you are dying away from your country.
- Supporting family
Decision-making is usually shared in Central Australian Aboriginal culture. Patients do not have difficult conversations on their own. Everyone has to hear the same information, and families, led by the right decision-maker, make decisions together. Sometimes everyone just has to hear the same thing, but there is no decision to make. “Antibiotics are not working. Heart is weak. Kidneys are not working. The person will not get better.” But all the talking is essential – respectful, honest, plain language talking. So too is sitting down and being ready to answer questions. This is a time when sadness for the family and patient are expressed. Everyone needs to be there – often 20 or more people come in from communities hundreds of kilometres away, children too, with more people on the phone from further away, listening in.Those serious family meetings are often very quiet, with little eye contact as people hear the news of another impending death, and it sinks in. Then making a welcoming space for people to stay with the sick person, and a safe space for necessary cultural grief practices at the time of death.
I love the team I work with, and our ALOs, who have taught me, and care with so much affection for our Aboriginal patients, laughing and crying with them and their families, advocating for them and bearing witness to their distress, protecting their dignity so carefully. We grieve for our patients, and we miss and remember them when they’re gone.
So yes, death in Central Australia is part of life – it’s just that it’s too much, and too soon.
Program of Experience in the Palliative Approach (PEPA) Project team. Cultural Considerations: Providing end of life care for Aboriginal people and Torres Strait Islander people (4.81MB pdf). Brisbane, QLD: PEPA; 2017.
Dr Christine Sanderson, Palliative Care Specialist, Territory Palliative Care – Central Australia, Alice Springs Hospital