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The Code, Child and Adolescent Mental Health and Concepts of Maori Health

Presentation to the RANZP Faculty of Child and Adolescent Psychiatry Conference and the Child and Adolescent Mental Health Services Conference
30 June 2000

Moe Milne, Kaiwhakahaere

1. Introduction

No health or disability service can be provided to a consumer without his or her informed consent. The right to make an informed choice and give informed consent is fundamental to individual autonomy, and is one of the essential elements in the Code of Health and Disability Services Consumers' Rights. The concept of respect for the intrinsic value and uniqueness of each individual child underlies all the Rights within the Code.

The Act and Code give power to groups such as those experiencing behavioural problems, psychological disorders or mental illness. Quality services are maximised in situations where consumers know and trust that the provider is working in partnership with them. While it is often difficult to achieve this partnership relationship when consumers are unwell, in a position of vulnerability, or lacking adequate information, positive outcomes can result when this inherent imbalance is redressed through the Code.

2. Respect - the key to the Code

Right 1, Right 2 and Right 3 of the Code of Rights provide, in a sense, the umbrella under which all the other rights in the Code fall. These rights go to the attitudes of providers. If a provider does not respect a consumer this is likely to impact on how services are provided to that individual. Respect is a key professional and social responsibility for all who are involved in the provision of health and disability services. Under Right 1, Right 2, and Right 3 of the Code of Rights consumers are entitled to be treated with respect, to be free from discrimination and exploitation and to have services provided in a manner that respects that consumer's dignity and independence.

Children's status in European society has traditionally been poor and this lack of respect has been reflected in policy, law and societal attitudes. Children have been vulnerable to paternalism and protectionism. Children have seldom been given individual respect but have been treated as subsets of their parents and have been excluded from participating from decisions impacting upon their lives, andparticularly from participation in decisions about their health care. For Maori these attitudes have been reflected in poor health status. The Commissioner has often spoken of the particular importance of the first three Code Rights for consumers who are vulnerable. Consumers who are young and who may not be competent to consent for themselves are particularly vulnerable and need to be shown particular consideration.

Right 3, the right to dignity and independence, focuses on the qualities of the individual child. This respects the dignity and mana of the child and reflects the view that children are taonga, to be treasured.

Right 2 of the Code, in particular discrimination, is of particular relevance for children. Children accessing mental health services may face double or triple discriminatory barriers to accessing care. All children receiving health or disability services may face discrimination because of their age - issues may not be communicated clearly to the child; information may not be conveyed to the child; the child's wishes may not be taken account of and any complaints or concerns made by the child may not be taken seriously. This reflects the traditional attitudes discussed earlier.

A further hurdle faced by children in claiming their rights as a health or disability services consumer is discrimination because of their illness. Often there may be a decision made by providers that because of a person's mental illness the consumer would not understand the information anyway so does not need to receive it.

The third hurdle faced by some children may be discrimination on the grounds of race or ethnicity. Maori are disproportionately represented in mental health statistics. There are suggestions that Maori mental health consumers are more likely to be described as being dangerous, and are more likely to be heavily medicated.

Right 1(3) states that consumers have the right to be provided with services that take into account the needs, values and beliefs of different cultural, religious, social, and ethnic groups, including the needs, values, and beliefs of Maori. This is a very important right when considering the treatment of children and young persons from other cultures, particularly Maori children. Every health care interaction involves the convergence of attitudes and cultures. The relationship between a provider and consumer involves a power imbalance between the provider and the consumer, which may mean that the health provider is in a position to impose the health provider's reality onto the consumer. Negative attitudes held by a provider about the consumer's values and beliefs can impact upon that consumer's mana and wellbeing and that consumer's perceptions of the value of the service he or she has received.

Health providers cannot seek to impose their views or attitudes on providers, the needs, values and beliefs of other cultures must be respected and services must be provided in accordance with those cultural requirements. Maori children, or indeed any child from a differing ethnic background than from the predominant pakeha/European culture, will have special cultural needs that must be addressed.

3. Informed consent

The essential elements of the informed consent process are effective communication, full information, and freely given, competent consent. Many problems of consent arise from poor communication. Right 5 of the Code therefore entitles every consumer, including children, to effective communication in a form, language and manner that enables the consumer to understand the information provided to them. Further, every consumer has the right to an environment that enables both consumer and provider to communicate openly, honestly and effectively.

Creating an environment for effective communication might include allowing the appropriate amount of time for consultations so that questions can be asked and answers given, using culturally appropriate methods of communication, using plain language rather than medical jargon, or providing written or visual explanations, and diagrams, toys or videos. It may also include encouraging as many support people as possible to be present to create a safe environment for the child. It should not be assumed that children understand advice given to a parent or that the parent can be relied upon to pass information on to the child.

Respecting the rights of children as individuals is important, as well as having regard for the child's cultural values. Consideration of the child's physical privacy also facilitates effective communication and is an integral part of the communication process. The involvement of whanau, or other support persons such as Kaumatua or rongoa Maori may help create an unthreatening environment. Children and young people's sense of identity is, in some cases, bound up with the relationships they have with their parents or their wider whanau.

One of the four cornerstones of Maori Health is the concept of Te Whanau. The concept of whanau deals with the linking of relationships from a common ancestor. Today, this means grandparents. Although the Code focuses on individuals and their rights, whanau is encompassed in the Code's fundamental principles. Taking into account the needs of Maori means that providers must recognise the relationship between children and their whanau. The wellbeing of the child cannot be enhanced without recognition of the importance of whanau wellbeing to that individual. Similarly, whanau wellbeing is enhanced by the individual wellness of its members.

Within whanau, Maori children and young people are regarded as taonga (precious/treasures) and rangatira mo apopo (tomorrow's chiefs). Children belong not only to matua (parents) but also to kaumatua and kuia (grandparents) and tipuna (ancestors). The whanau has collective responsibility for the care of children and young people. Therefore whanau involvement in decision-making is an essential component in achieving wellness and support for that child and for the family.

The law relating to the ability of children to consent to medical treatment is complex. One thing which is clear is that there is no one particular age at which all children can consent to all health and disability services. Indeed, the development of the law in this area demonstrates a trend away from age-related thresholds, and instead focuses on the competence of the individual child. The Code of Rights reflects this trend. Under the Code, the relevant question is not what is the age at which a child may validly consent to services, but rather the level of understanding of a particular child, which enables him or her to consent to the provision of a particular service. There is no blanket answer to this. It is not acceptable to assume that children or adolescents with mental illness are automatically incompetent. Children should be assumed to be competent unless assessed otherwise.

The assessment of a child's competence to consent should be made on a case by case basis and should ideally involve the whanau in the assessment process. The individual child's capacity to understand fully what is proposed must be assessed in light of the specifics of the situation and treatment. For example a child may be competent to consent to the setting of a broken leg but may not be competent to consent to a heart transplant. The uniqueness of the individual child must be taken into account and respected. In a mental health situation the child/young persons mental state may also have to be assessed to determine whether it impacts on their capacity to give consent. However, for the purposes of informed consent, the Code includes in the definition of 'consumer' those persons who are entitled to consent on behalf of the consumer if the consumer is unable to consent to the provision of services, whether this is because of the consumer's age or health status. For example, the parents or guardians of the child, welfare guardians, and those with power of attorney under the Protection of Personal and Property Rights Act 1988. This definition does not extend to wider whanau members, friends, Kaumatua, or other individuals who may have an interest in the consumer's wellbeing but who are not the consumer's legal representative.

However, there will be times when the views of such people need to be taken into account before services are provided. In instances where a consumer is not competent to consent and no-one entitled to consent on his or her behalf is available Right 7(4) states that providers must take into account the views of "suitable persons who are interested in the welfare of the consumer", providing the consumer's views have been unable to be ascertained. Right 7(4) of the Code details the steps to be followed in such cases.

A child's ability to understand will be affected by the way information is conveyed to them and in what environment and also by their emotional state and developmental maturity. Right 6(1) of the Code sets out information that a reasonable consumer in the consumer's circumstances would expect to receive, regardless of whether a choice is being made or consent is being given. Even where a child is not competent to consent, whether it be because of their degree of understanding and maturity, or because their judgement and understanding is impaired by mental illness, he or she must still be provided with information.

The extent of the information provided and the degree of complexity communicated should be tailored to that individual child's ability to understand. For Maori, decisions about the extent and complexity of information to be provided to the child should involve whanau. Two sets of information may need to be provided for children who are not sufficiently mature to make an informed choice and give informed consent. One set of information for the child, tailored to that child's level of understanding, and one set of information to the parent(s) who may be giving consent and to other whanau members.

The It is interesting to note, in the context of this discussion, that Article 12 of the United Nations Convention on the Rights of the Child (which New Zealand ratified in 1993) requires that all children be assured the right to express their views on all matters that affect them, and that those views be given due weight in accordance with the age and maturity of the child. Right 13 gives children the freedom to seek, receive and impart information and ideas of all kinds. Right 17 states that children should be ensured access to appropriate information.

Even if a child lacks competence to consent to provision of services, the child retains all the other rights in the Code.

4. Support

Every consumer has the right to have one or more support persons of his or her choice present (Right 8). Depending on the circumstances, a child's support person may also be the person entitled to give consent on his or her behalf. In most cases the presence of whanau or a kaumatua will not be an issue. It is only when safety may be compromised or another consumer's rights unreasonably infringed that the presence of a support person may be denied. There may be situations where it is not safe for a support person to remain with the child. The important thing to remember with regard to this qualification, as with the rest of the Code, is that the individual circumstances of each case must always be considered and an attempt made to comply with the Code as much as possible in those circumstances - it is not an 'all or nothing matter'.

5. Complaint

Providers can learn from consumers' comments, complaints and suggestions and use them to improve the quality of service and care they offer. For this reason, Right 10 of the Code enables consumers to complain about the services they receive, in any form appropriate to them. This includes children, although in practice complaints about service provided to a child will often be made by the child's parents or whanau. Children who exercise their right to complain must be taken seriously and have their complaint dealt with appropriately.

6. Appropriate standards

Right 4(4) of the Code emphasises the right to receive service provided in a manner that minimises potential harm to the consumer and optimises the quality of life of that consumer. Clause 4 of the Code defines 'optimises the quality of life' as meaning to take a holistic view of the needs of the consumer in order to achieve the best possible outcome in the circumstances. It is important therefore to emphasise that it is not just the physical wellbeing of a child that a provider of psychological or psychiatric services to a child should be concerned with. The Code emphasises holistic care of the child - care for the whole person. This means that a provider of mental health services must look beyond the purely clinical perspective and address the child'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 child.

The recognition that health is holistic is a cornerstone of Maori health. Te Hingengaro is generally interpreted to refer to mental health. It recognises that the mind, thoughts and feelings cannot be separated from the body or soul. Together they determine how people feel about themselves and are therefore very important factors influencing a person's health. Te Tinana is the physical body/representation of the ancestors. Maori believe that the mind, body, and soul are all closely inter-related and influence physical wellbeing. Physical wellbeing cannot be dealt with in isolation. nor can the individual be seen as separate from their family.

Treatment that an adult may take for granted may be particularly traumatic for a child. The trauma undergone by the child may have long term consequences for that individual child's wellness of the spirit, mind and body and may damage that child's potential for wairua (growth and development) in the future. Issues of mana/tapua are also important, particularly for adolescents.

Another factor that may damage the child's potential for growth and development in the future may be the recorded diagnosis of mental illness itself. A child may be diagnosed with a mental illness, and that diagnosis will follow that child throughout its life. The diagnosis has consequences in terms of the stigma and discrimination that faces those who are judged to have a psychiatric illness.

Right 4(5) of the Code is the right to co-operation among providers to ensure quality and continuity of services. When dealing with Maori it may be particularly important for providers to contact those individuals who are able to work inside the whanau to ensure co-ordination and quality of care. Such individuals may include Kaumatua rongoa Maori or other family members.

7. Conclusion

The Code of Rights is a tool for the empowerment of children and the parents/whanau of those children who receive mental health services in New Zealand. It imposes duties on providers of mental health services to ensure that the individual child is respected. The individuality and uniqueness of each child and the circumstances in which that child is in must be recognised by providers and incorporated into the care that child receives. Ensuring that children are effectively communicated with and receive full information can only improve the health professional's relationship with the child. The child's wellbeing in the holistic sense will be enhanced because of the reduction of fear and the increase in understanding felt by the child. Effective communication and the involvement of whanau and support persons may reduce any long-term trauma felt by children who may feel alienated by a procedure that they felt has been imposed upon them by others and which they had no understanding of or involvement in.