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.