The Human Rights Context of Mental Health Issues

Graeme Innes AM

Human Rights Commissioner & Commissioner Responsible for Disability Discrimination

MENTAL HEALTH LEGAL CENTRE (MHLC) FORUM: “ADVANCE DIRECTIVES”

Thank you for the opportunity to speak today.

I would like to acknowledge the traditional owners of the land on which we stand, and pay my respects to their elders past and present.

My congratulations to the organisers for organising this forum and opportunity to discuss a potential mechanism to protect the rights of people with mental illness and enhance the delivery of mental health care.

My role as Human Rights Commissioner is not to speak as an expert on mental health, but to emphasise the human rights dimensions of the way that we, as a nation, respond to mental health issues.

Today, we are here to discuss one of the myriad recent recommendations made by the Senate Select Committee on Mental Health to address the crisis in the delivery of mental health services and improve the protection of rights of people with mental illness. This crisis is not new. And the desire for reform is not new either.

The drive for national mental health reform began in Australia in the early 1990s with the convergent desires of consumers, families, carers and mental health professionals to see a high quality, comprehensive and responsive mental health care system. It coincided with the adoption by the United Nations of the Principles for the Protection of People with Mental Illness and the Improvement of Mental Health Care in 1991. These Principles emphasised community based care options and respect for the basic rights of persons with mental illness. While it is not a binding instrument in itself, the Commonwealth, State and Territory governments recognised the value of incorporating those principles into policy, and attempted to do so in the First National Mental Health Strategy in 1992.

At the same time, the Human Rights and Equal Opportunity Commission conducted a national inquiry into the human rights of people with mental illness which commenced in 1990. In 1993 the Commission released the report of this national inquiry. It is widely known as the Burdekin report, in honour of the massive contribution by its Chairman, my predecessor as Commissioner Brian Burdekin. The Burdekin Report treated the UN Mental Health Principles as a benchmark in determining whether or not the rights of people with mental illness were being protected. The Inquiry exposed the devastating personal consequences of grossly inadequate mental health and welfare services and found multiple breaches of basic human rights.

Another milestone in the attempt to reform service delivery occurred in 1996 when all governments agreed to the National Standards for Mental Health Services. While these standards are not a direct replica of the UN Mental Health Principles, they do reflect a basic commitment to provide services that respect individual human rights and equitable access to high quality mental health services.

For example, the Standards state that Mental Health Services should:

• obtain informed consent before personal information is communicated to people outside the Mental Health Service
• develop treatment and support plans with the consumer and other persons nominated by the consumer
• offer the least restrictive alternative to inpatient treatment and support, with consideration being given to the consumer’s preference; and
• assist in minimising the impact of admission on the consumer’s family and significant others, including care of dependent children.

Twelve years after the release of the Burdekin Report, the Human Rights and Equal Opportunity Commission, in collaboration with the Mental Health Council of Australia and the Brain and Mind Research Institute, initiated a new national review to capture the key critical themes in mental health care from the perspective of those who use or deliver its services on a daily basis. 351 submissions were received and over 1200 people told their stories at 19 national community forums held across Australia. These experiences were analysed using the National Mental Health Standards. As you may be aware, the report Not For Service captured persisting, distressing and daily experiences of inadequate mental health and community care and indicated that the rights of people with mental illness were still not being adequately protected.

In particular, and of importance to this forum today, concerns were strongly expressed across all States and Territories regarding the misuse and incorrect application of policies and procedures designed to protect the privacy and confidentiality of consumers. The complexity of, and misunderstandings about, privacy laws and policies hindered communication between consumers, carers and clinicians and led to obstructions in the provision of treatment and support to consumers.

There were many examples where mental health professionals refused to communicate with carers and family even when consumers had expressed a desire, and provided specific authorisation, for others to be involved in their care.

Despite Standard 5.3 stating that the “Mental Health Service encourages, and provides opportunities for, the consumer to involve others in their care' submissions were received indicating that some services actively discouraged the involvement of others, including carers and other mental health workers, in treatment and care plans. This denial, especially when involvement was specifically requested by the consumer, angered both consumers and carers alike. The exclusion of carers was seen to be detrimental to the planning and delivery of treatment and support.

Concern was also expressed that the impact of admission on the consumer’s family was not minimised and that children of parents with mental illness were not always notified of admission and their needs were not considered while their parent was in hospital.

According to one presentation at the forum held in Bunbury, no arrangements were made for the care of dependant children when their mother was admitted to hospital:

The police were fantastic with that woman but there was nothing done for her children when she was taken away.

Concern was also expressed regarding the lack of continuity of care and extreme distress for consumers and their families and carers when admission was required.

Concern was also expressed that clinicians often mistakenly assume that consumers lack the capacity to give informed consent and for this reason did not discuss matters with consumers.

One submission from Indigenous Social Justice Association and Justice Action in NSW specifically recommended the use of Advance Directives:

We have received complaints that people close to a patient have been told by staff that the person has objected to notice and other information being given out and the patient has stated that they made no such objection. This is abuse of the law which could be guarded against by our suggested Advance Directives, admission procedures and creation of a information consent Form, but really it ought not occur for reasons of right conduct.

Prior to the release of Not For Service, Federal, State and Territory governments were given an opportunity to respond to concerns raised. Interestingly, both South Australia and the Northern territory mentioned the use of Advance Directives in their responses:

The South Australian Government said:

Advanced directives can be made by a consumer to empower others to make treatment decisions on his/her behalf during temporary and permanent incapacity. However, in SA consumers are not currently empowered by law to express, in writing, their own wishes or treatment preferences in advance for periods of temporary incapacity. Ulysses Agreements are one form of advanced directives that has been used in many countries in various ways. There is strong consumer support for legislative recognition of this concept in SA.

The ACT government said:

MHACT, in collaboration with the Australian National University is currently trialling advanced agreements where consumers, clinicians, carers and others involved in care sign an agreement when the consumer is well that enables an agreed plan to be followed if the consumer becomes unwell. The project is in the early stages and will be evaluated after 12 months.

HREOC sees that advance directives have an important role to play in advancing the rights of people with mental illness to:

• Participate in decision-making processes, including the collaborative development of treatment and support plans
• Promote individual autonomy
• Promote informed consent
• Enhance communication between people with mental illness, service providers and other people nominated by the person with mental illness

To this end, HREOC supports the recommendation made by the Senate Select Committee on Mental Health to design and implement protocols that would, at the very least, recognise the rights of consumers to identify substitute decision-makers, appropriate treatments and for other financial, medical and personal decisions, particularly for the care of children.

However, as can be seen from the comments made by both the ACT and South Australian Governments, States and Territories have already commenced this very important work and HREOC believes that this is where the work should continue – at State and Territory level. While HREOC may have played a role 10 years ago in identifying an area of concern and potential solution, given that HREOC does have power over these issues or jurisdiction to intervene at State level, HREOC does not see itself as a central figure in the development and implementation of advance directives in each State and Territory. Rather, relevant agencies in each State and Territory should now be involved. The agencies would include, but not be limited to, the Attorney General’s Department, Department of Health, Guardianship Tribunal and Office of the Protective Commissioner and the Office of the Privacy Commissioner.

Given the recent spotlight on mental health, HREOC believes that now is the ideal time to pursue the use of advance directives to promote and protect the rights of people with mental illness and to improve the delivery of mental health care. HREOC encourages participants at the forum here today to engage with the relevant authorities in each State and Territory to make this option a reality.