Shared understanding about concepts related to medication was extremely
limited and even the ways in which staff and patients use and understand
the English term 'medicine' is very different. This was explained by
one of the patients:
.. Yolŋu say medicine if you swallow it through your mouth or put it on
a sore; if you give it through an injection its called 'djektjin' (not
medicine)
The Yolŋu patients also used the term 'medicine' to refer to substances such as phosphate, although when asked about her understanding of this term one patient was unsure if phosphate was a 'medicine' or a 'poison'. Confusion is therefore inevitable when talking about the action of medications on the chemical components of blood if Yolŋu use the same term to refer to both.
Examples of miscommunication related to the names and functions of medications
used in renal care have been described elsewhere .The extent of this problem
is illustrated even more vividly in the following extract from an interview
with long-term renal patient. This patient, who has a high level of fluency
in conversational English, talked about her knowledge of the names and
actions of her medications:
.. I've forgotten all their names - I can remember one or two...Caltrate
- we take two with food three times a day morning, dinner and afternoon;
the Caltrate brings down the levels of phosphate if they are too high;
(phosphate) makes you better again, no it makes you bad, if we don't look
after ourselves with the Caltrate, if we don't take it, the thing called
phosphate will reach high levels and hit our head...give us brain damage
...I don't really know what their (the other medications) names are: there's
Caltrate, that's the one I know best and magnum - the medicine called
'magnum' is like this, orange...when we take that, it's a separate thing
for our hearts and we eat it so we can walk for long distances but whenever
I take it my head goes a bit crazy and spins around - I become dizzy,
my head spins around; I'm sorry I don't know the names of the other medicines;
you know - you're a Balanda!
The patient did not mention any of the medications administered by injection
which, as she later explained, was because she was asked about medicines,
the term used by Yolŋu only for medications taken by mouth or applied
to the skin. When asked specifically about medications given by injection
she replied:
.. one injection EPO; and what else?
Another of her regular medications is Heparin, an anti-coagulant given
to prevent blood clotting, which is administered directly through the
tube while the patient is on the machine:
..if the Heparin hadn't been doing its job properly the blood would just
keep going through; that's the story about Heparin.. they put it through
the tube and they keep it there...to make the blood flow less strongly
so that the blood doesn't go too fast...so the blood doesn't flow too
fast..
The patient's understanding that this medication has an action which
is opposite to that which is actually the case had never been identified
- and therefore never rectified - during her many years on dialysis. Her
suggestion that there needed to be better education about medications,
particularly for new patients, could ensure that the poor education she
has received is improved :
the doctors need to do more with the new patients
to explain things properly - it's not so much for those of us who have
been here a long time; they need to really think about the new people
because they are very worried - they always sit in their with worried
heads so it's up to me to help them. We need more information... they
need to talk more and explain more when I'm lying on the bed - they should
talk about all the different medicines and say 'look, this one here is
Heparin and what's it going to do? It's going to stop your blood and this
one is EPO and you're going to get this for the rest of your life'. (interview with renal patient)
The patients' extremely limited understanding about their medications was not simply due to lack of information about the medications themselves. It is clear that such information has little meaning without first achieving a shared understanding about how the body works, the nature and causes of renal disease and the connections between food intake, the biochemical components of blood and the ways in which the various medications act on the body.
There is a strong expectation that patients will take their medication
as instructed and staff express frustration when this does not occur.
As long as patients are unable to make an informed choice about their
treatment, however, this is simply a matter of trust:
all comes to a bit of trust - take this and you'll
get better - yeh,right... (interview with renal physician)
This is problematic even in a culture that has a tradition of 'compliance'
with medical advice, but it is seriously inadequate for patients from
a culture which does not. In 1971 Hamilton recorded the following observation
about Aboriginal health care, which unfortunately remains just as relevant
to current practice:
The communication difficulties between medical staff
and Aborigines are not merely a result of language difficulties: in order
to give meaning to medical instructions and the reasons for them it is
necessary to find concepts which overlap the two cultural systems. If
this cannot be done the result is simply a chain of apparently arbitrary
orders and a kind of bullying to see they are carried out. (p.2)