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Beyond the Walls - Tihei Mauriora

Presentation to ANZAPPL
3 June 2000

Fiona McDonald, Legal Advisor & Moe Milne, Kaiwhakahaere

Tihei Mauriora - the celebration of the life essence. The moment when the new born child inhales its first breath and then breathes independently and with freedom. Tihei Mauriora! The celebration of the mother and the father of the life that has been nurtured and protected within the confines of the womb. The potential for this new life is given recognition as his life essence establishes its own rhythms. Tihei Mauriora.

Today I will be discussing how the Code of Rights and Maori needs, values and beliefs, and Maori concepts of health can work together to ensure that the rights are upheld and that the Oranga or wellness of Maori consumers is enhanced.

Aotearoa has a unique place in the medico-legal world. No other country gives health and disability consumers so many rights with the force of law. This is particularly important for Maori consumers and their whanau, as it means that receiving a culturally safe service is not dependent only on the goodwill of the provider but is a requirement of Right 1(3). While the Code of Rights applies to all consumers of health and disability services, they can be empowering for more vulnerable consumers such as mental health consumers.

It is important to remember that the Code is about people and respect for people underlies all the rights within it. Closely associated with this right to be respected are the rights to fair treatment and to dignity and independence.

Mental health service providers must always keep in mind the objective of providing the service so as to optimise the consumer's independence and quality of life. These first three rights of the Code together form an attitudinal umbrella under which all services must be delivered.

The whakatauki (proverb)

He aha te mea nui o te ao? He tangata He tangata, He tangata.

What is the most important thing in this world? It is people, it is people, it is people.

Let me tell you about "Hone". Hone was an inpatient in a psychiatric unit. On our arrival, Hone stood to deliver a mihi to us, his manuhiri. This actually took some time as Hone was so heavily medicated, he kept falling asleep during his whaikorero. He kept apologising, and the staff made attempts to get him to sit down. We said it was "kei te pai" as it was culturally necessary for Hone to feel he was carrying out his Maori requirements to welcome us to his place. Hone is a Maori male, aged around 35 - 40. On admission he was seen to be potentially violent and was diagnosed as having schizophrenia. Hone was then heavily medicated as a consequence. Some time later I met Hone at a hui for Maori providers. Again he stood to mihi. During the hui, Hone described aspects of his journey that keep him in a state of dependence and mental illness.

Hone now lives with discrimination because he has experienced a mental illness. His diagnosis, treatment and continuing care plan have been influenced by the fact that he is Maori, male and considered potentially violent. He feels that his mana has been desecrated, and this was partly due to non-recognition of his role as kaikorero for his people. He was not given the opportunity to perform karakia and learnt very quickly not to talk to his ancestors in public view. Hone's whanau were not involved in the decisions about his care in the community and yet there was the expectation that whanau would care for him - that is without support or resources. Hone's whanau are now a bit frightened of him because they've been told he could be dangerous because he is porangi. Hone feels he is not respected therefore his mana (dignity) is undermined and he now has to deal with double discrimination.

It is interesting to note at this point that providers' worries about the Privacy Act have engendered a habit of secrecy and lack of communication which is contrary to good practise. It is also extremely difficult for Maori who choose to have whanau as their primary support when providers do not co-operate to ensure that the consumer's best interests are paramount.

Many of you here today will know that Maori have extremely high readmission rates, and short hospital stays. You will also know that Maori usually enter psychiatric institutions:

• as committed patients (Mental Health Compulsory Treatment Act).
• through Police, the Courts, the Prisons.

The paper, Oranga Tangata, Oranga Whanau, (which is available) describes how whanau can be involved in an individual's wellness. I have included some opinions. As we travelled the country in this past year, we heard many stories from mental health consumers. Maori consumers and Pacific Island consumers told us stories that Karl Pulotu Endemann and myself - who are both nurses found really hard to believe. The largest deficit being in the area of information particularly with regard to medication and side effects, status, whanau involvement and making decisions.

"Maori people are dying with their rights on."

The challenge for providers and caregivers within mental health services is to remove the bricks that are an integral part of our institutions. These are not necessarily the buildings or the bricks and mortar.

For all consumers, de-institutionalisation must also mean the changing of behaviours and shifting attitudes. For Maori the institutions of racism and discrimination also need to be destroyed. Providers and caregivers cannot continue to deliver services or to de-institutionalise, from their own stereotypes or cultural paradigm. If we are to celebrate the life force, if we are to enhance oranga for Maori consumers then, we must take stock of the impact of our actions.

Tihei Mauriora.

Fiona McDonald:

As you have already heard the Health and Disability Commissioner Act became law in 1994. It is, as one commentator has noted, an Act with attitude. The Act is built on the premises that (1) the pre-existing law was inadequate to protect health and disability services consumers, and (2) there was a power and knowledge imbalance between health professionals and the consumers of their services that needed to be righted. To help fix this, Parliament authorised the creation of a Code of Health and Disability Services Consumers' Rights and suitable methods of enforcement.

The Code of Rights sets out 10 rights that all health and disability consumers are legally entitled to, and imposes corresponding duties on providers of health and disability services. The Code came into effect on 1 July 1996. The Code is a statutory regulation and, as I have already said, it gives health and disability services consumers legal rights and imposes legal duties on providers.

The Act defines the terms I've been talking about. "Health consumers" include "any person on - whom any health care procedure is carried out". "Health care procedure" includes "any provision of health services to any person by any health care provider". "Health services" covers any "services to promote health". The definition of a "health care provider" includes "any person who provides, or holds himself or herself out as providing, health services to the public or a section of the public whether or not any charge is made for those services".

Similarly "Disability services consumer" includes any person with a disability that reduces that person's ability to function independently and means that the person is likely to need support for an indefinite period. "Disability services provider" means "any person who provides ?disability services". "Disability services" includes "goods, services, and facilities provided to people with disabilities for their care or support or to promote their independence or that are provided for purposes related to or incidental to the care and support of people with disabilities or to the promotion of the independence of such people".

As you can see the term "provider" is defined very broadly in the Act, and extends beyond registered medical professionals such as doctors and nurses to include natural and alternative therapists and healers such as Tohunga, as well as home-based caregivers or whanau members and anyone else providing or holding themselves out as providing a health and disability service.

The first three rights in the Code provide an attitudinal umbrella under which health and disability services providers must work. Moe will discuss these rights in more detail later. However, the requirement to respect people, have regard to their dignity and independence, and not to seek to discriminate, exploit or harass people are basic human rights and have been strongly expressed in many national and international protocols such as the Human Rights Act, the International Covenant of Civil and Political Rights, the United Nations Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care and so on. Right 1, Right 2, and Right 3 also link very strongly to the internal codes of conduct that have been regulating the health profession for many thousands of years, initially expressed in the Hippocratic Oath.

All consumers have rights under the Code of Health and Disability Services Consumers' Rights. Consumers are not rendered ineligible to exercise their rights and providers are not excused from complying with their obligations under the Code because the consumer has a mental illness. If the consumer is confused or uncooperative because of illness or medication they still retain their rights under the Code.

If a consumer is subject to a compulsory treatment order under the Mental Health (Compulsory Assessment and Treatment) Act they lose their rights under Right 7(1) of the Code to make an informed choice and give informed consent to the provision of mental health services and under Right 7(7) to refuse consent to services ordered by the Court in the compulsory treatment order. However, a consumer in this position retains all other rights under the Code including the right to refuse services that are not included in the compulsory order. For example, such a consumer could retain the right to refuse to have a tooth extracted.

Right 7(2) creates a presumption that every consumer is competent to make an informed choice and give informed consent. Right 7(3) states that when a consumer has diminished competence they still retain the right to make informed choices and give consent to the level appropriate to his or her level of competence. Right 7(4) sets out the procedure when a consumer is held not to be competent to make an informed choice and give informed consent. As you can see a provider may still provide services to a person who lacks competence "where the services are in the best interests of the consumer". It is important to emphasise that when considering the "best interests of the consumer" regard must be paid to the consumer's social, religious and cultural circumstances and needs, as well as clinical circumstances.

If the views of the incompetent consumer have not been able to be discovered the provider is to take into account the views of other suitable persons interested in the welfare of the consumer and who are available to advise the provider. This may involve consultation with the family, friends or people such as kaumatua.

Informed consent is a process that culminates in the consumer making an informed choice. For a consumer's choice to be meaningful it must be informed. This involves a process where consideration must be given to Right 5 and Right 6 as well as Right 7 of the Code.

Right 5 gives the consumer the right to effective communication in a form, manner, and language that enables the consumer to understand the information presented to them. The second limb of the Right 5 says that the consumer has a right to an environment that allows both the consumer and provider to communicate openly, honestly and effectively. Effective communication might include allowing an appropriate amount of time for the consultation so that questions can be asked and answers given, using culturally appropriate methods of communication, using plain language, or providing written or visual explanations. Regard for a consumer's cultural values and consideration of his or her physical privacy also facilitates effective communication and is an integral part of the communication process. In addition, it is important to consider the needs of consumers who require the assistance of an interpreter. The importance of communicating with consumers cannot be overstated. Many complaints arise because of poor communication between consumers and providers.

Right 6 sets out consumers' right to receive information that they need to make an informed choice, or information that they would expect to receive in their circumstances. Providers should not be keeping information back from consumers if it is information that the consumer would expect to receive, such as an explanation of the consumer's condition, or side effects of medication. The list set out in Right 6(1) is indicative of the types of information that should be provided. This is particularly important for mental health consumers, as Moe will expand on.

In community mental health there will be occasions when members of families and whanau providing care to relatives with a mental illness have a dual role - as providers themselves, and as family providing support. The Code of Rights imposes obligations on family and whanau-based caregivers as they can be considered to be disability services providers for the purposes of the Health and Disability Commissioner Act. The relationship between family and others providing mental health services must be approached in a manner consistent with the Code. The requirement to co-operate envisages seamless transition between mental health providers, and extends, for example, to requiring that information relating to mental health services be shared with family caregivers to enable them to provide ongoing quality care. For example, where a whanau member is a principal caregiver of a relative discharged from a hospital into his or her care.

Having said this, it is also important to distinguish between co-operating and sharing information, and allowing the consumer to exercise their right to choose and express a preference as to who will provide services. For various reasons, there will be times when a consumer may prefer not to have a particular member of their whanau involved in their care. When this happens, the consumer may also express their wish that their personal health information not be shared with that person. Although the Commissioner's jurisdiction and the Code of Rights does not extend to privacy of information, sometimes providers will need to consider the overlap between their obligation to co-operate with others, and the need to respect a consumer's request that certain information about their health is not shared with certain members of their whanau. As long as the actions of the provider are reasonable in the circumstances, he or she is unlikely to be found in breach of the Code.

Right 4(4) is also particularly relevant in the context of mental health. This right ensures that services are provided in a manner that minimises potential harm to a consumer and optimises quality of life. Optimising the quality of life is defined in the Code as meaning to "take a holistic view of the needs of the consumer in order to achieve the best possible outcome in the circumstances." A provider of mental health services must look beyond the purely clinical perspective and address the consumer's quality of life in a manner that pays regard to and places importance on physical, mental, cultural and spiritual care to ensure the wellness of the individual consumer.

The Code therefore is tool with which mental health consumers can empower themselves to receive treatment free from discrimination and stigma, providers can use the Code as a model for good practice.