Today I got up early and ran the length of the island/peninsula (I'm not quite sure which it is). I saw too many kangaroos to count and numerous hog deer. No wombats, however. One kangaroo dashed across the path so close that he startled me. I think I startled him also. They're not used to people running along the path before dawn. At a distance you can tell the hog deer apart from the kangaroo because they run with constant height while the kangaroo bounce up and down as the race across the plain.
The island is beautiful and full of vegetation that I've never before encountered. It's more marsh-like than I had imagined. There are areas reclaimed by the water where dead gummy tree trunks stand testament to the forest that once ruled there. Intermittently, the trail opens into panoramic vistas of the lake. Ferns predominate on the forest floor. The earth is rich and black.
After breakfast, we prepared to make the journey across the water to the headquarters of the Coop where Lily and Shadow and family from the Northwest Territories were going to demonstrate some of their ceremonies for the local community. We had a marvelous barbecued lunch, met many people we'd seen in the last two years, and then watched Lily and Shadow do their "burning cure". I wrote about this last year in my blogs which are still available on www.futurehealth.org. Briefly they heat palm tree bark in a fire and apply that to painful areas of one's body. This year I asked them to treat my left sacroiliac area. I've been doing more intensive stretching and yoga to open my hips and pelvis (which a healer in Warburton told me were way too stiff) and I've discovered an old injury from 30 years ago which has become painful again as I have removed the armoring that had collected around it. The heat felt wonderful and I enjoyed as much of it as I could. Then they did the ritual where they put people on top of a fire on paper tree bark and throw water onto the fire with the people covered by blankets. It's like a mini-sweat lodge that lasts only a couple minutes. This is their cleansing/smoking ceremony. I also wrote about this last year and Shadow and Lily used their children again. Then they demonstrated spear throwing and it was time to go home.
On the way home, I interviewed Laura, an aboriginal patient advocate (in both senses of the term) from Western Australia who was part of Culture Camp this year.
Laura works the whole of Western Australia. I asked her about her job. She said, "We connect with go-to people in the region. We promote people's rights in the health system. I ask people if they have any problems we can assist them with. I offer to advocate to services about an individual complaint or problem but also more systemic issues because we find that a lot of people don't want to make official complaints either because they have no faith that the service will address their complaint or that they'll get worse treatment if they make a complaint. I think people don't realize that it is an official process that services are obliged to respond to."
I asked Laura about the kinds of problems she often encounters. She said, "People feel discriminated against because they are aboriginal. A lot of what we are addressing is miscommunication and misunderstanding. Often people feel that they get stuck or left in between services. Often it's up to them to get from A to B and people don't know how to do that. Also people have to travel ridiculous distances to access a test or a specialist or an operation. I'd qualify by saying some of that happens in the regions. A lot of times it's about it being available in a timely way. Like the specialist might be coming back in another three weeks or six weeks.
"I hear the same stories so often. One example of racism and discrimination is a young mom being told upon arrival to emergency that her small baby must be suffering from drug and alcohol withdrawal even though she had never drank or smoked or taken drugs. I hear this story regularly. By definition all aboriginals are drunk or doing drugs. Sometimes when people are sent to Perth they might be given a taxi voucher to get themselves to the hospital. They might be sitting in the airport for hours because they don't know how to get a taxi or they don't know what a how to get is a taxi or they're afraid to get into a car with a strange person or they revert to their original language because they're stressed and can't remember how to speak English.
"We do have a service that is just to liaise with aboriginal country patients but it isn't big enough to meet the needs and it's Monday through Friday 9 to 5 and a lot of things happen outside those times.
"In the hospitals even though we do have recently more aboriginal liaisons, often they'll only be liaising on certain wards in the hospital where the majority of aboriginal patients are. You can still be in the hospital and be told you're not entitled to the aboriginal liaison."
I asked Laura for her perceptions of the failure of the health care system for aboriginal people. She said, "Too often it assumes and doesn't communicate or ask the patient anything. They don't ask if they understand. There is a huge divide between services. The assumption is that someone else is taking care of it and it falls back on the patient.
"I think the aboriginal medical services do an outstanding job but we don't have enough health services or health workers to meet the need, particularly outside of Perth. We still have a lot of services in Perth but people can't afford them. Few services advertise that you have no cost for your appointment or that you have a much smaller cost.
"In Perth we have one aboriginal medical service where people get a free medical appointment under the close the gap initiative. Any aboriginal person at risk for getting a chronic disease gets free medication. Private practice gp's can bill the government for aboriginal patients or not. It's up to them. Any patient can take their receipt from the doctor and get a rebate from Medicare. A lot of people don't have the money to pay up front for the appointment. A lot of elders will put them last and not have funds for their appointment or their medication or even their transportation.
"Renal dialysis is one of the saddest examples of that division. A lot of places have no public dialysis services. You can get a machine in your house that the government pays for. You have to have enough space to house the machine and keep it away from children, etc. You have to own your own home or be able to stay for a long time. A lot of people are in Perth just to get their dialysis treatment. 80% are in Perth because there's no dialysis at home or they're waiting for people to die so they can get their spot on the machine. Quite often we have patients who have absconded. We get calls about patients who are not turning up for dialysis. I'll find them staying in the park down from my office because there's not very much in the way of affordable accommodations. That's where they find other countrymen who care about them and look after them. Or they've been kicked out of hostels which care for aboriginal patients because drinking is forbidden and they've had a drink.
"We advocated for a lady getting dialysis for quite a while. They gave her a tablet. She stopped turning up for her dialysis appointments. The service alerted us. We found her. She thought she just needed to take the tablet now and no longer needed dialysis. She didn't understand that without a transplant she'd be on dialysis for the rest of her life. We don't really have accessible interpreting services for a lot of regions. Even in Perth there's a lot of ignorance that aboriginal persons speak languages other than English. Often they let a grandchild do the interpreting. A lady found out she had cancer in Perth. They got her granddaughter to interpret. By the time she found out what her options were, they weren't possible any more. The cancer had progressed too much. We've had quite a few cases in the past 18 months."
"What about mental health care?" I asked.
"One of the biggest things because we ask people what issues they have is the lack of counselors or accessible programs or culturally secure programs for aboriginals. It's a huge void. Namely, the commonest thing is a family member ringing the service for help for someone else. Service says it's unethical to help without the person coming into their office or the gp making a referral. Then the crisis is not managed and the call ends in suicide. Yet they consider acting and preventing a suicide unethical. I think for our population a family referral would be very valuable.
"When people do manage to access services, the family is very out of the loop. A lot of services say that would be unethical because that's a breach of confidentiality. I know that a lot of patients want their family to come to the appointments but the providers still say it's a breach of confidentiality. The person is living with the family and even if they don't want the family involved, the people who are living with them need to be involved. Sometimes the patient doesn't even understand English and the services are using an interpreter and still refusing to involve the family.
"It's difficult for aboriginal people to leave country when they are sick or for births or deaths because country is their place for healing and their source of spirituality and support. For some remote communities, everyone knows where they fit and how they relate to everyone. It must be very difficult to come to Perth where no one cares about you and you don't fit. There is assistance for people who need to travel to give them an escort. That's up to the gp. Administrative stuff happens at the hospital and the hospital argues sometimes even when the gp says they need the escort. I had a man who was 70 years old who hadn't been to Perth for 50 years and all that the clerk wanted to know was if he could walk or not to go to his appointment. Particularly if people are going down for a test, they are outpatients so their accommodations are separate from the hospital. We have very limited services to help people get from the airport to their accommodations to their appointments. People lack the savvy to do this. A family was given a voucher for the public transport but they had never seen a bus in their life so they walked a couple kilometers to the train and didn't understand how to pay and then they got a fine. If they had a German accent they would have been tolerated but because they look aboriginal they were not tolerated. A young family couldn't find accommodation in Perth. The husband was from over 3000 km away. We helped him transfer to Darwin because it was closer to home. He was quite grumpy and bit snappy, but he was in his mid-30's suffering renal failure. It's not reasonable to expect him to be nice under those circumstances and" In the end he went home to be with family when he needed to and got an infection and died.
"I remember when we first went into the region people said you get to Perth in a plane and you return in a box. Our mob doesn't seek services until they're quite unwell which contributes to that perception. The understanding may need to be two way."
Next I asked Laura about the relationship of health care to traditional community healers, She said, "The aboriginal medical service because they're part of the community are able to link into traditional healers though they don't employ them. Often families do that off their own back [meaning pay for healers with their own funds]. Some willingness exists in mental health to work with traditional healers. Coverage doesn't exist for the moment. We have an expanding statewide mental health service. It will take a while to filter out what that means. We're not really sure what the status of their obligation is.
"It depends upon what region you're from whether or not you have healers. Sometimes it's the willingness of a particular staff member to see something like that especially for acute mental illnesses. The person might require an acute place to stay. People have to go a long way from home to access anything. That's hard for their recovery and for the family engagement. A lot of services say that social emotional wellbeing is not a part of what they provide. For example, the 70 year old man who needs an escort being told he doesn't. When someone doesn't have the means to get to the hospital for their appointment, that's a problem. Culture is treated as a layer you put on the end to make it seem a little nicer. They don't understand that people might not access service at all because it conflicts terribly with their own beliefs."
That seemed to be the theme of this week. Culture is not an afterthought. It is all important. Here is where the health system and the community disconnect. For the health system, culture is just cute art, because science has the answers and patients should just do as we say. Of course, even the recent history of medicine reveals that what medicine believes to be absolute fact turns out to be incorrect. We are curiously without history in medicine. Whatever we believe today, we act as if we have always believed it.
Here is an example from the United States. The cost of treating people who have had at least one hospitalization for depression and are on public funding has increased by 30% over the 10 years from 1996 to 2006 in a study just published. During that time no improvement in outcome was seen. Hospitalization frequency dropped, and so did psychotherapy from 58% to about 35%. Medication use increased from 81% to 87%. The increase in cost was attributed to the use of more expensive drugs, such as the adjuvant use of antipsychotics to treat non-psychotically depressed patients. Are we doing the right thing if costs go up with no improvement in outcome?
Implicit within the appreciation of culture is the understanding that medicine itself is just a story. Theories are stories and stories change. Treating the story is often more important than treating the disease because the disease is the story and the story is the disease. Our stories about the world arise from our bodies and represent our bodies' ways of communicating internal states. Change the internal state, change the story. Change the story, change the internal state. This is not obvious at all from within the biomedical paradigm.