I need the whole hour to tell you something good about it with so much gold.
I want you all to enjoy your dreaming things that have really helped raise the herself
into the good workload.
I'm going to be in the Iraq war.
Part II.
This evening we've spoken about the diagnosis of brain death and like I said you've had
a lot of information fairly quickly. There's another important more personal area that
we really only touched on and that's around the consent for organ donation. So let's
just take stock for a minute. We're talking about a very stressful time and it's important
to take a step back for a moment and really discuss the decision making process that goes
on in this situation. To assist us with this discussion, it's my pleasure to introduce
Bernadette Richards. Bernadette's a senior lecturer at the University of Adelaide with
a research focus on medical law. Welcome Bernadette. You've done some research in the
past on the community attitudes towards organ donation. Can you outline for us tonight about
this and what your research has found? Sure. I was involved in a team a couple of years
ago that did some quite extensive research on community attitudes into actually embryos
and organs but we're not talking about embryos tonight so we'll leave that for another time.
An interesting starting point from some of the things that we asked was one question
we asked was we had a discussion there about the status of a brain dead person. Now to follow
on from the information that we've heard already, what the community views, they showed that
there's a lack of certainty and a lack of understanding of brain death out in the community
because we had 45% of our respondents were quite clear. They said yes, that's a dead
body but only 20 and then they had 25% said it's a living body which shows that there's
a lack of understanding of the real status there so we found that quite interesting.
We then asked who do you think ought to be making these kinds of decisions? Now if we
talk about organ donation as a whole 60% so the majority of our respondents actually said
yes we are in support of organ donation and an overwhelming majority, we felt because
there was 73%, I'm giving you a lot of numbers here but quite often that's the easiest way
to make sense of it, said that the decision of whether or not to donate rests with the
actual person who is the newly dead person. It's something that we, a decision we make
in our life to what is to happen to our bodies when we are dead but there was a small percentage
around 13% who said that it's really up to the immediate family, the partner, the spouse,
the children, the parents but if there is a conflict between individual choice and what
the family wants, we had 72% said we actually think that what ought to happen is what the
donor decided during their life even if it upsets those who remain and that was the community
views that we received. 73%. So what do you think from your research and the work that
you've done in this area, what do you actually think determines people's willingness to donate?
Have you got any? Mine's really instinctive and we did get some evidence that higher education
levels tended towards a support for organ donation. I think it's a how long it's a
piece of string kind of thing, it's as individual as anything, I think it's education, I think
it's religious, I think it's personal experience. Has someone in your family needed an organ
transplant at some point? Do you know someone? I think there's just a whole variety of different
factors that actually come into play and it's a very, very complex process. Can you explain,
we've hedged around the issue of consent and so could you explain to us the consent to
medical treatment from a legal point of view? Medical treatment, during our life of course,
we actually have a very fundamental right to agree to what is or is not done to our bodies
so consent to medical treatment legally is about a conversation, it's about a conversation
between the person who will be treating and the doctor and the patient, it's about an
exchange of information, the law refers to it as material information and there's a
whole great slice of literature about this but at its very simplest, material information
is that information that would influence your decision making process. What would make a
difference to you and that usually goes into the risks inherent in the treatment, the possible
outcomes of the treatment, positive and negative and of course what happens if you don't have
that treatment and the bottom line is of course the autonomy of the individual person where
we as individuals whilst we are living, because we do need to then move on to donation which
happens after we are dead, whilst we are living we have the fundamental right to agree to
what is or is not done to us. So how's that different to consent for organ donation? Well
there's the whole living and dead issue and the absence of the conversation, the contemporaneous
conversation, the conversation must happen beforehand, the conversation must happen in
forums such as this or with your family and consent to organ donation is really something
that takes place as a result of legislative provisions, so did you want me to explain
what they are? In Australia we actually have a very rare situation where all of the states
agree with each other, we have a group of acts collectively called the human tissue
acts, the one here in South Australia is called the transplantation and anatomy act and there's
various combinations of that description around the states. Now here in South Australia we
have a provision in the legislation which is essentially that the designated officer
who we've been introduced to is to be comfortable that there is evidence that the donor has
consented during their life to being a donor. Now quite often registration, being on the
organ donation registry would be sufficient, here in South Australia of course it's all
in our driver's licence and so there needs to be consideration of what's on the register.
Now according to the law if there is no such evidence then they need to turn to what's
called the senior available next of kin which is a hierarchy of relations to you. Now for
a child your senior available next of kin is your parent, then either a brother or sister
if they're over 18 or a guardian. For an adult it's your spouse then it's either your son
or your children over 18 then it can be the parent or brother or sister so the parents
about the brother or sister. So then the law directs to having a conversation with the
next of kin. If there is evidence that the potential donor had specifically said no during
their life because you can register and no as well then there is also room for that conversation.
The aim of that conversation is to determine whether or not there's been a change in view
or circumstance or maybe they've had a conversation over the recent times to indicate that perhaps
whilst they hadn't got around to being at all they weren't on the register they would
like it or they were on the register but something's happened and they've changed their mind.
So that conversation happens afterwards but it has to be done by proxy with the family
at times. Essentially legally being on the register is enough authority however we're
human beings and there's also a very real emotionally charged situation and there's
some very real people before Stuart and Stephen and their colleagues that need to be talked
to. So alongside the law we have National Health and Medical Research Council the NH and MRC
have ethical guidelines and those ethical guidelines very clearly stipulate what to
do. These ethical guidelines look very much like the ANSIQ guidelines, they look very
much like the law but there's a little bit of a change and it's quite a subtle shift
but it's a significant shift because it talks about the need to have that conversation with
the family and the need to respect the family and the need to respect the fact that whilst
there's legal here there's also ethical considerations here and there's a mourning process and that
the family needs to be respected and the guidelines say that if there is evidence of significant
upset within the family then it really ought not to proceed even if there is clear evidence
that the person has indeed consented because according to the NH and MRC guidelines they've
got a very nice phrase here which is that consent in these circumstances is a permission
it is not a directive or a mandate. I see and so the consent process is quite a it's
not black and white. No I mean the law would like it to be it goes as far as possible for
it to be black and white but embedded in the law is the recognition of the very human process
that we're going through. And just to clarify can a dead person consent then? They can try.
We can take all reasonable steps and it comes back to this conversation I think we can take
all reasonable steps we can put if we feel very strongly either for or against then we
put our name down on the register we have that conversation with our families we do
everything that we possibly can to consent but at the end of it all we are dead and there
is no property in human human body you cannot dictate what does or does not happen to your
body you can't except for donated to research is about it legally and so then as soon as
our existence is not there our personality is not there then we become that web of individuals
that are around us supporting us. Thank you Bernadette that's really stepped through some
pretty tricky issues I think and I'm sure there'll be some questions about that afterwards.
We were going to take questions now but we are short of time so we're just going to defer
all the questions until the end if you'd bear with us through that because we just have
some other very important things that we want to cover with you. Thank you Bernadette.
