you walk into a doctor and the bad news
is confirmed you have cancer and it’s
probably terminal you’re told that you
can have chemotherapy which might work
but there’ll be serious side-effects you
say no thank you I’m gonna live the rest
of my life to the full spend that with
my family no chemotherapy
the doctor says actually no we really
think you need the chemotherapy and
we’re gonna give it to you anyway
by force if necessary that sounds
horrible doesn’t it that’s just that’s
just wrong it’s up to us whether we have
medical treatment or not no matter how
serious it is isn’t that just a
fundamental right well for most of us it
is but for people with serious mental
illnesses this can happen all of the
time they say no to medical treatment
but then they get it anyway the reason
for this the legal reason is that if you
don’t understand the nature and effect
of a decision that you’re making the law
says that you don’t have capacity to
make that decision legally then someone
else can make it for you whether or not
that’s right that’s the way the law
works so if this happened to a person
who had capacity the situation that I
said at the start they could sue the
doctor the doctor could even be charged
with a crime a person with a mental
illness though who’s found to lack
capacity can be treated against their
will so this legal concept of capacity
has a profound importance it separates
out legal from illegal now talking about
legal concepts most people here know
about guilty versus not guilty in fact
you probably know quite a bit about it
you know that guilty means proving
something beyond reasonable doubt and
that not guilty doesn’t necessarily mean
that you didn’t do it most people
probably don’t know that much about
capacity though and maybe you should
because how it works
raises some very difficult but important
questions like why is it that
jehovah’s witness can refuse a blood
transfusion even if that will result in
their death but someone with a mental
illness can’t refuse medical treatment
and we should care because this could be
anyone every year one in five
Australians experiences a mental illness
over a lifetime the rate is almost one
in two now we would never allow somebody
without a mental illness to have forced
medical treatment so why do we pick on
those of us who do why is that okay
isn’t that discrimination doesn’t that
interfere with people’s rights well
these are tough questions and over the
last decades there’s been a big rise in
opposition to this part of our legal
system there’s been a big rising concern
for autonomy freedom of decision making
and there’s been a lot of people with
direct experience from the mental health
system who’ve said no we need to stop
forcing people to have treatment whoever
they are give people the decision-making
power over their own bodies and these
perspectives are incredibly important no
matter how much good we might think that
it does in the long run we have to
acknowledge that getting forced medical
treatment is always awful it’s always a
violation and it’s not good enough just
to say well they’ve got a mental illness
it’ll do them good they need it there’s
nothing to worry about
there is something to worry about but we
need to stop and think from the other
perspective what would happen if we
stopped this involuntary treatment what
would happen to those people with mental
illnesses who said no to treatment for
their illness and here’s the thing maybe
they said no because of their mental
illness if we stop treating them then
aren’t we giving in to the illness say
the person with clinical depression who
says no to treatment because as she’s
clinically depressed she can’t imagine
that the treatment could work or the
person with schizophrenia who says no to
because his schizophrenia makes him
think that the doctors are trying to
poison him so we have a dilemma
treating people against their will seems
wrong but not doing it seems wrong to
and this dilemma brings us to the heart
of the problem of what are we doing here
what is the point of our law and policy
for people with mental illnesses seems
like it could be about two things is it
about their protection protecting people
from the effect of mental illness or is
it about autonomy freedom of
decision-making whichever you think it
is you probably think it’s needs to be
either one or the other it can’t be both
because those two are incompatible but
I’m not so sure it’s such a common human
tendency to think that something is
either this or that but I think if we
think like that here that’s when we get
into trouble to explain only thinking
about autonomy can lead us to places
that most of us would be uncomfortable
with three years ago the British
Parliament had an inquiry into their
Mental Capacity Act what they heard was
that social services some local health
authorities had been purposefully using
a part of the Act which was supposed to
protect autonomy in order to stop
treating clients who told them to go
away not by the way in order to protect
these people’s autonomy but in order to
save money what happened to the people
they stopped treating well we don’t know
but we know that without social services
without treatment some people with
serious mental illnesses can have pretty
awful lives homelessness prison death is
that what we want so you see that
thinking about autonomy can actually
lead you somewhere which is callous and
inhumane on the other hand as we saw the
critics of forced treatment also have a
point throughout our history very bad
things have happened too
people with mental illness all in the
name of their protection so what’s the
answer I think that we need to think
about autonomy and protection at the
same time every time we make a decision
about someone and to say how that could
work
firstly I think that it means if you do
understand the nature end of effect of a
decision that you’ve made whether you’ve
got a mental illness or not and whatever
that decision is that decision should
always be respected so we do respect
autonomy but we also acknowledge a role
for protection and I’m going to tell you
about a way that that can work it’s
called risk relative capacity and to
explain how that can work let’s think
about somebody with a serious mental
illness
call him James James as a young person
he has to gets afrien eeeh James is in
hospital and a doctor comes to do a
routine blood test and James says I
don’t want it the doctor asks him some
questions and finds that James know
something about blood tests but doesn’t
seem to fully understand what they’re
for
does James have capacity to make that
decision well this is not a risky
decision he doesn’t need this blood test
it’s not gonna hurt him if he doesn’t
get it so we don’t need to expect a high
level of understanding of James before
we’d say his capacity in fact we don’t
even need to assess his capacity let him
decide another doctor comes to James and
asks him if he wants to participate in a
medical research trial and James says
yes the doctor asks him some questions
and finds out that James understands
something about medical research trials
but doesn’t seem to fully appreciate
what this one is does James have
capacity to make that decision
well medical research trials can carry a
level of risk so in that case it’s okay
for us
make sure that James does understand
what he’s getting himself in for so we
can assess his level of capacity against
the level of risk of participating in
this research so maybe he does maybe he
doesn’t we need to check sometime later
James is in hospital again he’s been in
a car accident the doctor comes to him
to do a blood transfusion and James says
I don’t want it the doctor asks him some
questions and James seemed to understand
what a blood transfusion is that doesn’t
seem to fully appreciate the situation
that he’s in the doctor knows that he’ll
probably die without one does James have
capacity to make that decision
well refusing the blood transfusion is a
very risky decision it’s not complicated
but it’s risky in that case we can
expect and look for a higher a better
level of understanding of the decision
from James before we would say he has
capacity even though the decision about
whether to refuse a blood transfusion is
only as complex as the decision as to
whether refuse a blood test our standard
of capacity for the transfusion should
be higher now maybe James does
understand just because he has a mental
illness doesn’t mean that he doesn’t but
it’s okay for us to make sure after all
if we get it wrong and he dies we don’t
get another chance
so that’s risk relative capacity that’s
how it works if you think about it
what’s going on there is you’re
balancing autonomy and protection in all
of those decisions now risk relative
capacity is applied in our system at the
moment informally to some minor extent
but it is not a part of formal policy
and it’s not a part of our legislation
on capacity and the reason is it’s
considered controversial and it’s
considered controversial because it adds
an element of protection into a test
that people think should only be about
autonomy as I said at the start it’s
we only think about one of those things
that we get into trouble now you might
think that what I described that making
this adjustment for capacity and
understanding versus the risk of a
decision doing that every single
decision that sounds hard
sounds tricky it sounds difficult and it
is difficult because you’re balancing
two completely different things but so
it should be it should be hard to work
this out because it’s an incredibly
difficult and complicated decision let’s
go back to criminal law we spend weeks
months sometimes a large amount of money
on criminal trials to work out whether
somebody is guilty of a crime or not
when we do that we balance two
completely different things we balance
the defendants right for a fair trial
and the people’s right to justice it’s
not an easy balance to make sometimes
guilty people walk free I think we need
to accept that deciding capacity is also
not an easy balance but it’s one that we
need to try to do as well as possible
and if we can do it if we can learn to
balance our respect and care for
people’s welfare with a strong and
constant respect for people’s autonomy
if we learn to think about both of those
things and always at the same time we
can make our system better thank you
you
is confirmed you have cancer and it’s
probably terminal you’re told that you
can have chemotherapy which might work
but there’ll be serious side-effects you
say no thank you I’m gonna live the rest
of my life to the full spend that with
my family no chemotherapy
the doctor says actually no we really
think you need the chemotherapy and
we’re gonna give it to you anyway
by force if necessary that sounds
horrible doesn’t it that’s just that’s
just wrong it’s up to us whether we have
medical treatment or not no matter how
serious it is isn’t that just a
fundamental right well for most of us it
is but for people with serious mental
illnesses this can happen all of the
time they say no to medical treatment
but then they get it anyway the reason
for this the legal reason is that if you
don’t understand the nature and effect
of a decision that you’re making the law
says that you don’t have capacity to
make that decision legally then someone
else can make it for you whether or not
that’s right that’s the way the law
works so if this happened to a person
who had capacity the situation that I
said at the start they could sue the
doctor the doctor could even be charged
with a crime a person with a mental
illness though who’s found to lack
capacity can be treated against their
will so this legal concept of capacity
has a profound importance it separates
out legal from illegal now talking about
legal concepts most people here know
about guilty versus not guilty in fact
you probably know quite a bit about it
you know that guilty means proving
something beyond reasonable doubt and
that not guilty doesn’t necessarily mean
that you didn’t do it most people
probably don’t know that much about
capacity though and maybe you should
because how it works
raises some very difficult but important
questions like why is it that
jehovah’s witness can refuse a blood
transfusion even if that will result in
their death but someone with a mental
illness can’t refuse medical treatment
and we should care because this could be
anyone every year one in five
Australians experiences a mental illness
over a lifetime the rate is almost one
in two now we would never allow somebody
without a mental illness to have forced
medical treatment so why do we pick on
those of us who do why is that okay
isn’t that discrimination doesn’t that
interfere with people’s rights well
these are tough questions and over the
last decades there’s been a big rise in
opposition to this part of our legal
system there’s been a big rising concern
for autonomy freedom of decision making
and there’s been a lot of people with
direct experience from the mental health
system who’ve said no we need to stop
forcing people to have treatment whoever
they are give people the decision-making
power over their own bodies and these
perspectives are incredibly important no
matter how much good we might think that
it does in the long run we have to
acknowledge that getting forced medical
treatment is always awful it’s always a
violation and it’s not good enough just
to say well they’ve got a mental illness
it’ll do them good they need it there’s
nothing to worry about
there is something to worry about but we
need to stop and think from the other
perspective what would happen if we
stopped this involuntary treatment what
would happen to those people with mental
illnesses who said no to treatment for
their illness and here’s the thing maybe
they said no because of their mental
illness if we stop treating them then
aren’t we giving in to the illness say
the person with clinical depression who
says no to treatment because as she’s
clinically depressed she can’t imagine
that the treatment could work or the
person with schizophrenia who says no to
because his schizophrenia makes him
think that the doctors are trying to
poison him so we have a dilemma
treating people against their will seems
wrong but not doing it seems wrong to
and this dilemma brings us to the heart
of the problem of what are we doing here
what is the point of our law and policy
for people with mental illnesses seems
like it could be about two things is it
about their protection protecting people
from the effect of mental illness or is
it about autonomy freedom of
decision-making whichever you think it
is you probably think it’s needs to be
either one or the other it can’t be both
because those two are incompatible but
I’m not so sure it’s such a common human
tendency to think that something is
either this or that but I think if we
think like that here that’s when we get
into trouble to explain only thinking
about autonomy can lead us to places
that most of us would be uncomfortable
with three years ago the British
Parliament had an inquiry into their
Mental Capacity Act what they heard was
that social services some local health
authorities had been purposefully using
a part of the Act which was supposed to
protect autonomy in order to stop
treating clients who told them to go
away not by the way in order to protect
these people’s autonomy but in order to
save money what happened to the people
they stopped treating well we don’t know
but we know that without social services
without treatment some people with
serious mental illnesses can have pretty
awful lives homelessness prison death is
that what we want so you see that
thinking about autonomy can actually
lead you somewhere which is callous and
inhumane on the other hand as we saw the
critics of forced treatment also have a
point throughout our history very bad
things have happened too
people with mental illness all in the
name of their protection so what’s the
answer I think that we need to think
about autonomy and protection at the
same time every time we make a decision
about someone and to say how that could
work
firstly I think that it means if you do
understand the nature end of effect of a
decision that you’ve made whether you’ve
got a mental illness or not and whatever
that decision is that decision should
always be respected so we do respect
autonomy but we also acknowledge a role
for protection and I’m going to tell you
about a way that that can work it’s
called risk relative capacity and to
explain how that can work let’s think
about somebody with a serious mental
illness
call him James James as a young person
he has to gets afrien eeeh James is in
hospital and a doctor comes to do a
routine blood test and James says I
don’t want it the doctor asks him some
questions and finds that James know
something about blood tests but doesn’t
seem to fully understand what they’re
for
does James have capacity to make that
decision well this is not a risky
decision he doesn’t need this blood test
it’s not gonna hurt him if he doesn’t
get it so we don’t need to expect a high
level of understanding of James before
we’d say his capacity in fact we don’t
even need to assess his capacity let him
decide another doctor comes to James and
asks him if he wants to participate in a
medical research trial and James says
yes the doctor asks him some questions
and finds out that James understands
something about medical research trials
but doesn’t seem to fully appreciate
what this one is does James have
capacity to make that decision
well medical research trials can carry a
level of risk so in that case it’s okay
for us
make sure that James does understand
what he’s getting himself in for so we
can assess his level of capacity against
the level of risk of participating in
this research so maybe he does maybe he
doesn’t we need to check sometime later
James is in hospital again he’s been in
a car accident the doctor comes to him
to do a blood transfusion and James says
I don’t want it the doctor asks him some
questions and James seemed to understand
what a blood transfusion is that doesn’t
seem to fully appreciate the situation
that he’s in the doctor knows that he’ll
probably die without one does James have
capacity to make that decision
well refusing the blood transfusion is a
very risky decision it’s not complicated
but it’s risky in that case we can
expect and look for a higher a better
level of understanding of the decision
from James before we would say he has
capacity even though the decision about
whether to refuse a blood transfusion is
only as complex as the decision as to
whether refuse a blood test our standard
of capacity for the transfusion should
be higher now maybe James does
understand just because he has a mental
illness doesn’t mean that he doesn’t but
it’s okay for us to make sure after all
if we get it wrong and he dies we don’t
get another chance
so that’s risk relative capacity that’s
how it works if you think about it
what’s going on there is you’re
balancing autonomy and protection in all
of those decisions now risk relative
capacity is applied in our system at the
moment informally to some minor extent
but it is not a part of formal policy
and it’s not a part of our legislation
on capacity and the reason is it’s
considered controversial and it’s
considered controversial because it adds
an element of protection into a test
that people think should only be about
autonomy as I said at the start it’s
we only think about one of those things
that we get into trouble now you might
think that what I described that making
this adjustment for capacity and
understanding versus the risk of a
decision doing that every single
decision that sounds hard
sounds tricky it sounds difficult and it
is difficult because you’re balancing
two completely different things but so
it should be it should be hard to work
this out because it’s an incredibly
difficult and complicated decision let’s
go back to criminal law we spend weeks
months sometimes a large amount of money
on criminal trials to work out whether
somebody is guilty of a crime or not
when we do that we balance two
completely different things we balance
the defendants right for a fair trial
and the people’s right to justice it’s
not an easy balance to make sometimes
guilty people walk free I think we need
to accept that deciding capacity is also
not an easy balance but it’s one that we
need to try to do as well as possible
and if we can do it if we can learn to
balance our respect and care for
people’s welfare with a strong and
constant respect for people’s autonomy
if we learn to think about both of those
things and always at the same time we
can make our system better thank you
you
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