Chapter 3 - Mental health and human rights
Introduction
3.1
Mental illness raises many human rights issues. People
with mental illness experience discrimination within society, and even within
the health care system; mental illness can cause significant social disadvantage
that under-resourced services may fail to adequately address; during episodes
of acute illness, a person with mental illness may be unable to assert their
rights at the very time when those rights may be most vulnerable to being
breached; people experiencing acute mental illness may be treated against their
will, or confined against their will, which can be a serious threat to their
rights.
3.2
Human rights have been central to discussion about
mental health care reform in Australia
and overseas. Australia's
1991 Mental Health statements of rights and responsibilities
focused on consumers' and carers' human rights. The intention was 'to promote
social justice, equity, access and a compassionate society with metal health as
a primary goal'.[96]
3.3
In the early 1990s, the National Inquiry into the Human
Rights of People with Mental Illness sought to assess how well the human rights
of the mentally ill in Australia
were being honoured. The findings were not encouraging. That inquiry was
conducted by reference to human rights instruments developed through the United
Nations system and to which Australian governments are committed either as a
matter of legal obligation or as a matter of policy.[97]
3.4
The Human Rights and Equal Opportunity Commission
(HREOC) summarised the findings of the Burdekin Report:
... people affected by mental illness suffered from widespread
systemic discrimination and were consistently denied the rights and services to
which they are entitled.
Families and carers were found to be badly overstretched and
insufficiently supported. As well as improved crisis facilities and other
community mental health services the Burdekin Inquiry recommended better
information for carers and greater provision for involvement in decisions.
... recommended consistent accountability mechanisms and service
standards.[98]
3.5
The National Mental Health
Strategy (NMHS) has been significantly influenced by the Burdekin Report and
the Statements of rights and responsibilities.
This has included the development of national standards for services. In 1996
the Australian Health Ministers' Advisory Council's National Mental
Health Working group endorsed National Standards for Mental Health
Services (the Standards) which
signified 'an important milestone in the achievement of the 1992 agreement by
Australian Health Ministers to the development of national standards for mental
health services under the Mental Health Strategy'.[99]
3.6
The Standards
demand that the rights of people affected by mental disorders or mental health
problems be upheld by mental health services. They include twelve criteria
regarding consumers' and carers' rights. The criteria state, among other things,
that: mental health services staff should comply with relevant legislation and
instruments protecting the rights of people with a mental illness; consumers
should be informed of their rights and responsibilities; consumers should have
access to independent advocates and to accredited interpreters; and consumers
and carers should have easy access to a responsive and fair complaints
procedure.[100]
Consumers' rights
3.7
The Burdekin Report made the obvious points that people
with mental illness are human beings with human rights, and that they are
entitled without discrimination to the full range of human rights.[101]
The report concluded that:
... our current neglect in terms of violations of the most fundamental rights of Australians
affected by mental illness ... demand an urgent, concerned and effective
response.[102]
3.8
People with mental health issues are protected by the
anti-discrimination provisions of the Disability
Discrimination Act 1992:
The DDA was enacted to eliminate, as far as possible,
discrimination against people on the grounds of disability, and to ensure that
people with disability have the same rights to equality before the law as the
rest of the community.[103]
3.9
HREOC informed the committee that all states and
territories, except for South Australia, now also cover disabilities from
mental illness with their equal opportunity or anti-discrimination laws in
broadly similar terms to those contained in the Commonwealth Act.[104]
3.10
HREOC also submitted that a 2000 evaluation of
Australian mental health legislation found that there had been significant
progress in reform of that legislation since the adoption of the NMHS:
Every state and territory has amended or is amending its mental
health legislation to move away from an emphasis on detention to a model based
more properly on human rights – although the same evaluation showed that no
Australian jurisdiction had achieved full compliance with the UN Mental Health
Principles.[105]
3.11
Reforms made under the NMHS have been beneficial for
consumers:
We acknowledge the extent to which some of the changes driven by
the National Mental Health Strategy have
influenced mental health services. Apparent among these is the consumer
involvement in auditing services and the development of the National Mental
Health Practice Standards and the National Mental
Health Service Standards.[106]
3.12
Not all consumers do believe, however, that current
policies adequately reflect their human rights:
There is a growing worldwide social movement of mental health
consumer-survivors that sees itself in the tradition of the civil rights
movements, women’s liberation and feminism, Gay
Pride movement, and also the physical
disabilities movements that are now recognised as communities with their own
cultures, needs and rights. The rights of these other movements to speak – and
be heard – in their own voices, from their own direct experience, and from
within their own communities and cultures, is now generally recognised,
accepted and respected in Australian society. This is not yet the case for
mental health consumers and survivors.[107]
3.13
Consumers' rights may be compromised in other ways. Two
of the most critical are denial of services and abuses within services.[108]
Denial of services
3.14
The Statements of
rights and responsibilities states that 'the consumer has the right to a
co-ordinated and ongoing range of adequately resourced ...treatment'.[109] Many consumers, however, are denied
proper treatment because insufficient resources are allocated to mental health
services. In the words of the HREOC submission, 'Governments have not matched
their words with resources'.[110]
3.15
According to insane australia:
The current, limited public debate on mental health in Australia
today focuses largely on the appalling lack of resources for mental health
services. At insane we agree that mental
health services are grossly neglected in this country and that many people are
dying, mostly through suicide, from this neglect. This neglect needs to be seen as not just a
failure to resource an essential service but as a violation of our fundamental
human rights.[111]
3.16
However, insane australia submitted that lack of
resources is a second-order issue. It argued that people in desperate need are
denied access to services not only because of lack of resources but also
because they do not meet diagnostic criteria.[112]
It also argued that the real cause of human rights violations is the stigma
surrounding mental health. This stigma results in discriminatory practices
which are intrinsic to the system. Insane australia claimed that without a
changed approach the allocation of more resources would only entrench the
current human rights abuses of mental health consumers and survivors.[113]
3.17
The committee has discussed issues surrounding the
allocation of resources to mental health services, stigma attaching to mental
illness and problems regarding diagnosis. These matters are examined in Chapter
4, Chapter 7 and Chapter 5, respectively.
Abuses within services
3.18
Abuses within services are said to include hostile
environments, mental health staff ignoring or dismissing consumers' personal
feelings, physical abuse and forced treatment. Graphic examples are included in
Chapter 8. The evidence suggests that if there were greater levels of consumer
participation in their own treatment and in the provision of mental heath
services this might alleviate at least some of those concerns.
Consumer participation
3.19
The Burdekin Report and the various documents that comprise
the NMHS endorse consumers' participation in the mental health system. One
consumer commented on the findings contained in the Burdekin Report:
For the first time in the history of mental health policy in
this country we were perceived outside the sick role. This was a very
significant change in policy direction and one of the key platforms of the
First National Mental Health Strategy. There
was a new vision for consumers to start playing vital roles in ‘the system’; as
peer supporters, educators of the mental health workforce, as consultants to
the system, advocates and other paid roles in service delivery; consumer
evaluators and decision makers; service auditors; researchers; orators and
visionaries.[114]
3.20
A number of witnesses stated, however, that the promise
of substantial consumer participation in the delivery of mental health care had
not been met:
Although National and
State Mental Health Plans emphasise the
importance of consumer participation, particularly in the planning, monitoring
and review of mental health services, there is little evidence that consumers
are meaningfully and substantially involved in the development of the methods
and procedures used in the monitoring and review of services.[115]
3.21
Another witness submitted that:
Consumer involvement in mental health programs and services is
largely tokenistic, minimal and
inadequate. Consumers need to be
involved in their own treatment and in remaining well, and in the design of
appropriate services and programs. There is currently very little funding and
support for consumer driven services and recovery focussed services.[116]
3.22
The National Mental Health Plan 2003-2008 has
identified the need for greater consumer participation at all levels, including
the development of policy, planning, implementation and evaluation of services,
and research.[117]
Extent of participation
3.23
The Australian Government submitted that at the
national level consumers are now integral participants in policy forums and
committees and are members of project reference groups.[118]
Consumers and carers account for 25 percent of the membership of the Mental
Health Council of Australia (MHCA), the peak body
representing groups and individuals concerned with mental health.[119]
3.24
A witness who has been a consumer representative on a
number of government advisory boards argued that the representation of consumer
organisations on MHCA, on which other interested parties were also represented,
was not sufficient for the views of consumers to influence decision making:
Having responsibility for drafting a constitution [for the MHCA]
we tried to build in clauses that would ensure that the consumer voice did not
get swamped by all the professional and other voices which we knew would now
demand to be part of this new and potentially influential body. It was obvious
right from the beginning however that the MHCA could not be for the consumer
voice the strong articulation that NCAG[120]
had been. Put simply, we would never have the numbers ... Having the numbers is
essential because we don't have the power derived from professional authority.[121]
3.25
The Australian Mental Health Consumer Network made a
similar point:
Because of differences in
assumed and real power between consumers and other players in the mental health
industry the Australian Mental Health Consumer
Network policy is that consumers should work together in at least pairs.[122]
3.26
The MHCA agreed that consumers are not sufficiently
involved in mental health services:
The [National Mental Health]
Strategy has established consumer and carer participation in service planning
and delivery as a desirable goal, though there is little evidence it has
progressed into a practical reality. It has established consumer rights as an
accepted part of service delivery, though again there is considerable evidence
that the exercise of such rights is weakened
by a lack of support for consumers and carers. There is inadequate and patchy
funding to train and support carers and consumers to enable them to participate
fully in this role, and what is available often does not address mental health
issues specifically. As importantly, a change in service culture and practice
by the mental health workforce is required so that they recognise the rights of
and work effectively with consumers and carers. This is a fundamental and
urgently needed element of workforce training and service.[123]
3.27
The involvement of consumers needs to respect the
diversity of mental illnesses, but also the diversity of treatment outcomes and
experiences. The unpaid nature of many consumer advocacy roles, the stigma that
still attaches to having experienced mental illness, and the organisation of
consultative meetings during the working day are factors that work against
consumer representatives being people who have fully recovered from an illness
or are successfully managing it while engaged in full-time work.
3.28
If people with a mental illness who are living and
working in the community are involved as consumer representatives, this would
provide a greater range of viewpoints, with several advantages:
(a) they are an excellent resource that comes into play; and (b)
the community begins to understand that good outcomes are highly possible. To
do that we need to think about when we hold meetings and have funding to cover
costs.[124]
3.29
The National Mental Health
Reports (NMHRs) compiled by the Commonwealth Department of Health and Ageing
contain data on the progress of mental health reform under the NMHS.[125]
The latest report found that:
Overall, the results suggest that the involvement of consumers
and carers in mental health service development is increasing when assessed
against these 'coarse' criteria.[126]
3.30
These 'coarse' criteria relate to the structural
arrangements made by service delivery organisations for involving consumers and
carers, with the data being assigned to one of four levels. A Level 1
arrangement is one in which consumers and carers are given a formal place in
the local decision making structures or a specific consumer and carer group is
established to advise on all aspects of service delivery. A Level 4 arrangement
is one in which agencies have made no specific arrangements for consumer and
carer participation.[127]
3.31
The 2005 NMHR found that the proportion of
organisations with some type of formal mechanism for consumer participation had
increased from a 53 percent 'baseline' in 1994 to 82 percent in 2003. Ten years
into national mental health reform, however, 18 percent of mental health
service organisations remained without a basic structural arrangement for
consumer and carer participation.[128]
3.32
Taken at face value, these data indicate that,
throughout Australia,
arrangements have been made by most organisations to enable consumers to have
input to the delivery of mental health services. The 2005 NMHR states, however,
that consumers and carer representatives had suggested that the progress
reported by the states and territories in the previous NMHRs did not match
consumers' and carers' perceptions. In particular, consumers and carers
considered that the measures used in the survey did not provide information on
the extent of the commitment of an organisation to employing consultants.
3.33
In the 2003 National Survey, on which the 2005 NMHR was
based, additional data were sought on the employment of consumers and carers as
an indication of the commitment of organisations to consumer participation.
These data showed what was described in the 2005 NMHR as 'a more realistic
picture':
Nationally, a total of only 53.6 fulltime equivalent consumer
consultants and 8.6 carer consultants were employed across the 251 mental
health service organisations funded by state and territory governments. Total
expenditure on consumer and carer consultants in 2002-03 was $2.5 million, or
0.2 per cent of total spending on salaries and wages.
Consumer and carer consultants are not employed in all states
and territories. Three jurisdictions (Western Australia,
Tasmania and the Northern
Territory) reported neither category within their
2002-03 workforces.[129]
Rationale for consumer
participation
3.34
There was no real dissent from the widely-held view
that consumers have a major role to play in mental health care. One witness
summarised that role:
Consumers can and should play a core role in monitoring service
quality and ensuring that services are responsive to consumer needs. This includes employing consumers as consultants
within services as well as ensuring they contribute to pre-service and
in-service training for mental health professionals. Statewide consumer advocacy organisations are
another important component as they can identify and seek redress for systemic
problems as well as resourcing and supporting consumers taking on consultancy
roles in services.[130]
3.35
The Victorian Mental Illness Awareness Council informed
the committee that:
It has been our observation and experience that the knowledge
and skill gained through the “lived experience” is invaluable with regard to
assisting other consumers not only when people are quite unwell, but also in
the recovery and rehabilitation phases of their illness.[131]
3.36
Consumers play a useful role in the treatment even of
forensic patients.[132] At the Thomas
Embling Hospital
in Melbourne,
which treats forensic patients, consumers perform valuable functions:
One of the things that has been a remarkable success—to me, at
least—has been the development of consumer representatives within the hospital
and within the community service ... when this started seven or eight years ago I
was somewhat sceptical about whether this could work, given the nature of our
system and the nature of our patient population. In fact, it has been an
extraordinary success. Every unit has its own consumer rep. We employ consumer
representatives who have been patients in the hospital and are now in the
community. They make a very important contribution to the running of the
hospital and to the whole way in which we manage treatment.[133]
3.37
While there is clear support for consumer
participation, its extent seems still to be too limited. This limited role
afforded to consumers is even more clear when it comes to the absence of
consumer-run services.
Services delivered by consumers
3.38
The committee heard evidence suggesting that twelve
years after the adoption of first National
Mental Health Plan there are no consumer-run mental health services in Australia,
and that resources have not been put into exploring successful consumer-run
services despite ample evidence from overseas that these work:[134]
Where is the money to investigate whether consumer-run crisis
services are less damaging than professionally run ones, or peer counselling is
more effective than drugs once every two weeks and so on.[135]
3.39
The Australian Mental Health
Consumer Network submitted examples of publicly-funded, consumer-run services
that had apparently achieved success in other countries. These were: safe
houses that provide 24 hour crisis respite; sub-acute 'peaceful places'; and
'warm lines' that consumers can ring to speak to people who have experienced
mental health issues first hand.[136] The
SOAR Consumer Case Management in Madison, Wisconsin,
and the employment of consumer case workers in Hawaii
were also cited as examples of successful consumer-run services.[137] AMHCN pointed out that the only
consumer-run recovery service in Sydney
was achieving success but completely lacked government support:
Pitane Recovery Centre is the only consumer run recovery centre
for consumers in metropolitan Sydney.
This centre has no funding whatsoever from mental health services and relies on
small community grants, membership fees, and fundraising efforts of consumers.
Yet this centre is gaining an international reputation due to providing a
unique range of recovery activities which consumers not only enjoy but have
given very positive feedback.[138]
3.40
Not everyone was supportive of consumer-run services.
As regards the provision of treatment by consumers, one professional service
provider observed:
That consumers feel they could do better is important and is
another indictment of service failure. ... During the sixties we had consumer
groups taking responsibility for the treatment of early psychosis. This
experiment failed – people with psychosis do need medication. There is
professional knowledge, and for all disorders evidence-based care is better
than compassionate care...[139]
3.41
A community-based, volunteer, non-profit support and
advocacy organisation submitted that:
In theory the provision of services for consumers by consumers
is laudable. However, to what extent this is feasible given the level of
debilitation is unknown.
Having said that, only consumers can give a consumer perspective
on what is and is not perceived by them to be a positive approach. However,
because of the many different illnesses that make up mental illness, the vast
variation in levels of severity of episodes from time to time for the
individual, and the vast differences between people it has to be recognised
that this is a very complex question with no straightforward answer.[140]
Involuntary treatment
3.42
In an environment in which human rights are clearly
tenuously maintained and sometimes breached, the forced treatment of
individuals is a difficult and controversial practice. Involuntary admissions
and treatment are common, and can be the norm in acute inpatient settings. For
example, 83 per cent of patients admitted to St Vincents Acute Inpatient Unit
in Sydney
are involuntary admissions.[141] The
actual level of people being treated against their will is probably higher than
figures alone suggest. In addition to involuntary admissions, some patients are
threatened with being made involuntary if they attempt to leave hospital.[142] In practical terms, these too might
be considered 'involuntary' patients.
3.43
Involuntary and coerced 'voluntary' treatment give rise
to questions regarding human rights, especially when the person being treated
has not been charged with a crime:
...for 5 months I was imprisoned in Mental Institutions and
injected and forced to swallow tranquilisers against my will, without any
proven wrong doing or transgression. I am completely innocent and seek full
justice...[143]
3.44
Some took the view that the philosophical and practical
problems with involuntary treatment were so great that it should never occur.[144] Most people with a mental illness are
entitled to refuse treatment. In the words of one carer:
Frustrating as it may seem to bystanders, especially families,
individuals who are ill do have a right to refuse treatment. Some do so through
lack of insight or misinformation; some for very sound reasons and good
understanding of the effects of treatments.[145]
3.45
Some persons,
however, do not have the legal right to refuse treatment. Mental health laws in
all Australian jurisdictions make provision, in certain circumstances, for the
detention of people with mental illness and for involuntary treatment. The
relevant provisions in the different Mental Health Acts vary among the
different jurisdictions, but generally they provide that if persons appear to
suffer from a mental illness, if their health or safety is at risk, or if they
pose a threat to members of the public, they may be 'scheduled' or 'sectioned'
as involuntary patients.
3.46
The Mental Health
Commission of New Zealand recently published a paper, No-Force Advocacy by Users and Survivors of Psychiatry, prepared by
Tina Minkowitz,
an American human rights lawyer and a self-described survivor of psychiatry.
Also published in the document are commentaries on the paper from lawyers and
consultant psychiatrists.[146] The introduction to that paper states:
Minkowitz advocates for psychiatry without compulsion. Two
principal grounds underlie her advocacy: force is a breach of human rights, and
secondly that force is counter-productive, doing more harm than good. She
examines a range of relevant human rights and human rights instruments,
including the UN Convention Against Torture.[147]
3.47
The lawyers' commentaries on the Minkowitz paper focus
on the limits of a human rights approach, especially when the courts are
unwilling to uphold those rights, and on difficulties involved in relying on
the UN Convention Against Torture. It is argued that allegations of
mistreatment may provide a more effective route for challenging forced
incarceration and compulsory treatment than reliance on the Convention.[148]
3.48
Two consultant psychiatrists who commented on the
Minkowitz paper and the Mental Health
Commission itself did not entirely agree with the 'no force' proposal. They
considered that, in the words of Dr Codyre,
an Auckland-based psychiatrist, the use of compulsion needs to become the rare
and temporary exception rather than the rule for engaging people with serious
mental illness in care and treatment.[149]
There was agreement also that compulsion was overused. Dr
Curtis, an Australian psychiatrist, stated
that not all involuntary examinations are necessary,[150] and the Mental health Commission
considered:
... we believe that those emergencies [occasions when compulsion
is necessary to protect people from immediate danger to themselves or others]
are far less frequent for people who have not committed a crime than New
Zealand's compulsory treatment rates
suggest.[151]
3.49
Involuntary treatment, usually administered in the form
of drugs, may be provided in an institution or in the community. Insane
australia submitted that outside of the hospital setting forced treatments and
coercion are found in the widespread and growing use of Community Treatment
Orders.[152] Insane australia submitted
that voluntary patients are often coerced into treatment by the threat of being
made involuntary patients, or are deceived, tricked or bullied into taking
potent psychotropic drugs with harmful side effects.[153] At the same time, the Committee
heard from families who had tried to ensure that someone was admitted to or
kept in hospital, and who felt that discharge was often neglectful, and
sometimes tragic in its consequences.[154]
Consumers versus carers
3.50
Involuntary treatment also raises issues for carers,
and is an area in the treatment of mental illness where there is at least the
potential for tensions between the rights of carers and those of consumers. The
Statements of rights and responsibilities
states that:
Carers and advocates have a right to comprehensive information,
education, training and support to facilitate the understanding, advocacy and
care of those consumers they care for.[155]
3.51
However, some consumers and their advocates consider
that consumers and medical personnel should have absolute discretion not to
provide information to carers:
Crucially also, governments and service providers must resist
the ongoing pressure from carers to facilitate greater access to confidential
information about consumers. Privacy of information concerning mental health is
a fundamental right protected at every level - from the International Covenant
on Civil and Political Rights down to domestic legislative regimes and
professional codes of ethics. And it has vital therapeutic importance. It is
essential for consumers' trust and rapport with therapists that they are confident
their privacy will be respected. Periodically in Victoria
there is pressure to broaden the capacity of services to disclose information
to carers beyond the provision of the Mental Health Act 1986. As it is that provision discriminates against
consumers in that the comparable provision which applies to users of general
health services under the Health Services Act 1988 contain no such exception.
Facilitating greater access to personal information for carers than already
exists is likely to lead to further distrust of and disengagement and
alienation from mental health services.[156]
3.52
Some carers see things in a different light. A father
of a son who experienced mental illness and who committed suicide and husband
of a wife who requires care, including occasional hospitalisation, for bi-polar
disorder, informed the committee that:
In the case of my son, no information was ever provided to those
who were expected to care for him after each of his 3 discharges. Family were
not even informed that he was to be discharged despite the assumption that they
would care for him. He was in effect discharged onto the street.
I now have a much more aggressive approach and will demand, with
whatever threats are necessary, information about my wife and how to care for
her. This should not be necessary, but all too often is.[157]
3.53
Parents who lost a daughter to suicide submitted:
We would rather have our daughter alive with some of her rights
set aside than dead with her rights (uselessly) preserved intact.
The most important 'right' that a mentally ill person (or an
outside person coming into contact with a violent patient) has is the right to
life...[158]
3.54
The committee is concerned that consumer rights,
including the right to privacy, should be respected, but this should not become
an excuse for failure to engage with the families of those with mental illness,
inadequate discharge planning or failure to implement appropriate community
care.
Accountability issues
3.55
Providers of mental health services, in common with
providers of all public services, should be accountable to the people for the
efficiency and effectiveness of those services. This requires that:
Accountability mechanisms should be developed and implemented
across the mental health system at both a Federal and state level to ensure
that the progressive policies and philosophies contained in plans such as the
National Mental Health Plan (NMHP) 2003-08 are actually delivered in practice.[159]
3.56
One measure of effectiveness is whether every person
with a mental illness who requires care receives care. In the absence of an
accurate assessment of needs, it is not possible to know if this has been the
case. An indication of needs is provided by an Australian Bureau of Statistics
study that found that in 1997 approximately 18 percent of Australian adults
(2.4 million) had experienced a mental disorder at some time during the
previous 12 months.[160] The committee
heard estimates that perhaps only 40 percent of people who should be treated
are treated,[161] and that:
Mental health consumers are less likely to be diagnosed with
health problems, less likely to complete treatment, and less likely to receive
state of the art treatment.[162]
3.57
There were concerns expressed about the level of
accountability at a systemic level:
... blaming the victim and shooting the messenger is very much
alive and well in the mental health care system. Thus, accountability is only limited to the
few things governments, organisations, managements and staff cannot get away
with.[163]
3.58
Another witness contended that:
... one of the reasons there are gaps in services generally and
why certain groups continue to fall through the cracks is because both levels
of government are not really held accountable for the mental health status of
their communities. Governments should be aiming towards marked percentage
improvements in the health status and quality of life in the population
generally and in particular for vulnerable groups.[164]
Accountability to consumers
3.59
For the individual who does receive treatment the most
significant measure of the effectiveness of mental health services is the
outcome for that individual. Some consumers and service providers hold
different views about what constitutes a successful outcome. According to the
Victorian Mental Illness Awareness Council:
The failure to either understand or respect the principles of consumer
participation is perhaps best demonstrated by the introduction of consumer
outcomes.
Consumer outcomes have been introduced in some clinical and
non-clinical services. Consumers in the psychiatric and disability
rehabilitation sector were given a choice of measures. What the services failed
to do was provide consumers with the education necessary to make an informed
decision. Thus, services got the measure they preferred.[165]
3.60
Successful outcomes include the concept of recovery
from illness, but recovery from mental illness may not have the same
connotation as recovery from a physical ailment:
Recovery is a myth; promulgated by over-optimistic therapists ...
Recovery is a very positive and uplifting word. It has been linked into a
limited medical model where it does not fit. 'Personal recovery' may be a
better term as it stresses the individual ...[166]
3.61
The Centre for Psychiatric Nursing and Practice
submitted that consumers should define recovery and what approaches should be
used to facilitate recovery.[167]
Desirable outcomes therefore may have a significant element of subjectivity:
Outcome measures need to be consumer driven, if they aren’t then
their validity and reliability is highly questionable. We need to stop the pretence
that experts know best and it is they who know what indicates a good outcome.
The person receiving the service can only determine what constitutes a good
outcome. Therefore measures need to be developed in collaboration with them.[168]
Advance directives – A way forward?
3.62
Consumers are likely to achieve successful outcomes if
they participate in their own treatment, but this may not be possible at those
times when they are extremely unwell. This has led to suggestions that when
consumers are experiencing good health they could give advance directives (also
known as 'living wills') about matters that may affect them later, during
episodes of illness, including directives about their treatment.
3.63
HREOC produced a discussion paper on 'living wills' ten
years ago. The Commission defined a 'living will' as:
... a voluntary statement outlining the types and conditions of
medical care that a person would prefer in a given situation prior to requiring
care. A person may also nominate one or a number of substitute decision-makers
(Power of Attorney) to make decisions of their own behalf. A living will sets
out a consumer's wishes in relation to treatment decisions in advance ... A
living will may also cover financial, personal and medical decisions
concurrently.[169]
3.64
The discussion paper addressed several issues
surrounding the making and implementation of advance directives, including
their legal status, invocation and advocacy implications. HREOC invited comment
from interested parties, and received several submissions in response, but
appears not to have proceeded to making a report.[170]
3.65
The submissions made in response to HREOC's invitation
canvassed many matters of a legal, medical and practical nature. The committee
has noted these matters, but has not been able to consider them in detail. It
is of interest, however, that provision has already been made in Canada
for agreements similar to the proposed advance directives.
3.66
The committee was told that if consumers with episodic
illnesses were able to prepare advance directives regarding their treatment and
other matters of importance this could somewhat alleviate their situation if
they are involuntarily detained. A witness gave the following example of what
might be included in an advance directive on treatment:
‘I do not want ECT unless’ or, ‘I have been tried on Mellaril
and I have really bad side effects from it. Please don’t put me on Mellaril,
but I have had this other drug before and that has been okay.’[171]
3.67
The committee was also given an example of another
important matter that could be included in an advance directive:
... one woman was taken by the police from her flat. They left two
children under 10 in the flat. This woman became very upset. They saw that as
part of her psychotic illness so they just kept medicating her more and more.
It turned into a crescendo in the acute setting. This woman said to us that she
wanted to have an advance directive that said: ‘If I get taken away by the
police, this is my sister’s number. Please ring her. She needs to come
straightaway and look after the kids.’ That does not seem to be too difficult a
request. If it is all written down beforehand, it is very empowering for people
to have.[172]
3.68
Other witnesses similarly advocated the making of
advance directives. The Mental Health Legal Centre (MHLC) informed the
committee that it considered the introduction of 'living wills':
... is crucial for people who know there is some likelihood that
they might be involuntarily detained against their wishes. They can include areas such as treatment eg.
what drugs to avoid, views on ECT, activities or therapies of preference,
nominated contacts and people to be consulted or not; employment and study,
role of family; what will happen to the children, this is especially important
if the consumer is a single mother – no medical intervention will have any
salutary effect unless mothers know their children are safe; the bills are paid
etc. [173]
3.69
Dr Meg Smith OAM, speaking at a national conference on
mental health services at the University
of Newcastle in 1997, discussed
what could be included in advance directives, making similar points to those of
Ms Epstein
and others. She identified 'treatments to which one objects' as being
appropriate for inclusion in an advance directive. She reported that in her
case haloperidol had dreadful side effects, while another medication,
clonazepam, was much more pleasant, had fewer side effects and worked just as
quickly as haloperidol.[174]
3.70
From her experience as a member of the New
South Wales Guardianship Board Dr Smith
suggested that guardianship legislation, or the principles of guardianship, may
be an appropriate vehicle for the making of advance directives.[175] She also offered practical advice to
people thinking of making a living will:
-
Research the current service system. Choose a
couple of hospitals, asylums or places where you can be cared for.
-
Pick some good friends or carers to carry out
your wishes; who do you know who is strong, determined, articulate, persistent?
...
-
Find out about new treatments and services. Talk
to other consumers. Ask your health care workers...
-
Educate your health care workers. What are their
attitudes and values?[176]
3.71
According to Dr Smith:
Living wills and, more importantly, the process of making one,
can be a powerful way of accepting disability in your life and putting it into
some context. I don't think very much now about impending illness or worry
about what is going to happen if or when I become ill. Like my other will it is
tucked away to be activated when necessary.[177]
3.72
However, Dr Peter
Bartlett, Nottinghamshire Healthcare NHS
Trust Professor of Mental Health Law at the
University of Nottingham, UK, observed that, based on the judgements of British
courts, there may be difficulties in the application of advance directives:
The courts have no stomach for taking rights seriously in this
area, [involuntary treatment] particularly when the contest is between a
psychiatric patient and doctors or other well-intentioned professionals. The
precisely similar problem occurs, by the way, for advance directives: the experience
is that the courts will bend over backwards to find reasons why they don't
apply.[178]
3.73
Despite some possible legal problems, MHLC stated that
the development of 'living wills' is 'an essential tool to protect the human
rights of people with episodic illness'.[179]
It recommended to the committee that there should be a national approach to
pursue the initiative.[180]
Conclusion
3.74
Since the release of the Burdekin Report there have been significant advances in the
official acknowledgment of consumers' human rights and the incorporation of
those rights in legislation. Nevertheless, there is evidence that, in practice,
the rights of consumers may be denied by a lack of adequate services, and there
is anecdotal evidence that consumers have sometimes suffered abuse within
services.
3.75
Consumers also do not participate in their treatment to
the extent that the NMHS demands that they should. Witnesses made many
suggestions as to how consumer participation could be increased. These
suggestions may be found in the submissions made to the committee, and should
be explored further by service providers.
3.76
A suggestion of particular interest, which should be
explored as a matter of priority, is that people who have episodic illness
should have the right to make advance directives regarding their treatment and
other matters of importance. If these directives were followed by service
providers, there could be many advantages. Consumers would have a greater voice
regarding their own treatment, within a legally recognised framework, however
sick they might occasionally be. Service providers could be more efficiently
guided toward successful treatment strategies, which would reduce the time
consumers spend in care, reduce the pain and suffering they endure, and reduce
the costs. Transitions into and out of acute care could be smoother, and less
traumatic for family members. Finally, many of the serious concerns surrounding
inappropriate treatment and unnecessary curtailment of consumers' rights could
be addressed.
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