Page Section: Centre Content Column
The Code of Rights and Maori Concepts of Health
The Code of Rights and Maori Concepts of Health -
Co-operating to Achieve Individual and Whanau
Wellbein
1. Introduction
Kia Ora mai ano tatou
katoa
Aotearoa New Zealand 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. The Code
of Health and Disability Services Consumers' Rights is a tool for
the empowerment of all health and disability services consumers in
New Zealand. While the Code's focus is on individuals as consumers,
it also has the ability to encompass the aims and aspirations of
Maori, Maori concepts of health, and whanau wellbeing.
Significantly, the Code also considers the principles of Te Tiriti
o Waitangi as a means of achieving empowerment and wellness for
Maori health and disability services consumers.
Maori are high users of health and
disability services. However, for a variety of social and cultural
reasons, they don't often complain when the quality of these
services, or the manner in which they are provided, is
inappropriate. It is important that individuals and whanau are
aware of the Code of Rights and how to exercise the rights within
it. This paper discusses how this aim can be achieved within the
framework of Maori concepts of health, Te Tiriti o Waitangi and the
Code of Rights.
2. The Health and Disability
Commissioner Act and Te Tiriti O Waitangi
At the outset, it is useful to
outline how the Health and Disability Commissioner operates within
the context of Te Tiriti and the Government's objectives for Maori
health.
The Health and Disability
Commissioner Act 1994 establishes the role of the Commissioner and
defines the Commissioner's functions. You may be interested to know
that under section 10, one of the matters to be considered in
respect of the qualifications for appointment as Commissioner is
the person's knowledge and recognition of the aims and aspirations
of Maori.(1) Furthermore, section 7 requires the Commissioner and
every person exercising or performing any power or function under
the Act to take into account the Crown's objectives as notified in
the Health and Disability Services Act 1993, and published in Whaia
te ora mo te iwi Maori (2) which includes objectives in relation to
the special needs of Maori. (3)
The Government established as its
principal Maori health objective "the improvement of Maori health
status so as to enable Maori the opportunity to enjoy the same
level of health as non-Maori." This objective is supported by
section 20(1)(c)(iii) of the Health and Disability Commissioner
Act, which specifies what the content of the Code of Rights is to
include, and Right 1(3) of the Code itself, which gives every
consumer 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.
Indeed, as Commissioner, I actively
seek to ensure that Maori access the Code, that the Commissioner's
office reflects its commitment to the principles of Te Tiriti, and
that the rights of Maori consumers are promoted and protected. The
appointment of a Kaiwhakahaere demonstrates this. The
Kaiwhakahare's role focuses on the special needs of Maori,
including the need to promote awareness and education among Maori
consumers about rights under the Code, for the purpose of
responding to the disparities in health that exist between Maori
and non-Maori. This includes taking active steps to encourage Maori
to exercise their rights.
I also recognise the importance of
the individual to the whanau and of the whanau to individual
wellness. For instance Health and Disability Commissioner
advocates, whose role is to assist consumers to resolve their
complaint at the lowest appropriate level, are also required to
consider the needs, values, and beliefs of Maori when resolving
complaints, including the involvement of whanau to achieve the best
long-term outcome. More importantly, consumers are legally entitled
to the support of whanau through the exercise of Right 8 of the
Code.
(1) Health and Disability
Commissioner Act 1994, s10(f). See also s10(g), "the person's
recognition of the social, cultural, and religious values of
different cultural and ethnic groups in New Zealand."
(2)Ministry of Health, 1991
(3)See Health and Disability
Services Act 1993, ss8(1)(e) and 8(3)
3. The Code of Health and Disability Services Consumers'
Rights
The Code of Rights, which came into
force on 1 July 1996, is an example of how individual rights may be
protected in legislation in a manner which requires effect to be
given to tikanga Maori. The Code gives rights to all consumers when
receiving health and disability services and places corresponding
duties and obligations on all providers of health and disability
services.
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 obligation on all providers is
to take reasonable actions in the circumstances to give effect to
the rights in the Code. These are:
- the right to be treated with respect
- the right to freedom from discrimination, coercion, harassment,
and exploitation
- the right to dignity and independence
- the right to services of an appropriate standard
- the right to effective communication
- the right to be fully informed
- the right to make an informed choice and give informed
consent
- the right to support
- rights in respect of teaching and research
- the right to complain
While all the rights in the Code are
relevant to Maori, some give particular assistance. However, before
I discuss these, it is important to outline the values and beliefs
of Maori in respect of health and wellness, and how they are linked
to the principles in the Code.
4. Concepts of Maori Health
There are four cornerstones to Maori
health that are recognised in health service delivery. These
are:
Te Wairua Maori
This is the non-material, spiritual
essence of a person. It is the life force that determines who you
are, what you are and where you are going to and provides a vital
link with the ancestors. The Code recognises this aspect under
Right 1, the right to respect.
Te Hinengaro
This concept is generally
interpreted as referring to mental health (illness and wellness).
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 thus their state of health. The Code's
holistic approach to consumer wellness and the aim of enhancing the
consumer's quality of life is consistent with te hinengaro.
Te Tinana
This is the physical body / the
present representation of the ancestors. Maori believe that the
mind, body and soul are all closely inter-related and influence
physical well being. Physical health cannot be dealt with in
isolation, nor can the individual person be seen as separate from
the family. Right 8 of the Code, the right to support, is important
in respect of the latter point.
Te Whanau
Finally, the concept of te whanau
deals with the linking of relationship from a common ancestor.
Today, this means grandparents. As I have already mentioned,
although the Code focuses on individuals, te whanau is encompassed
in its fundamental principles. Taking into account the needs of
Maori means providers must recognise the relationship between
individuals and their whanau. The wellbeing of the individual
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.
5. Linking Maori concepts of
health to the Code of Rights
The Code assists in achieving
individual wellness, which in turn contributes to whanau wellness /
oranga whanau. I would now like to move on to a more detailed
consideration of how these concepts are interwoven. While I am not
able to give advance interpretations on the Code's application, I
hope that you will find the following general comments useful.
Right 1
The Code of Rights is about people,
and respect for the uniqueness and individuality of all consumers
underlies all the rights within it. As a broad statement of
principle, a consideration of Maori needs, values and beliefs is
inherent in Right 1, the right to respect. Closely associated with
Right 1 are the rights to fair treatment (Right 2), and to dignity
and independence (Right 3). These first three rights of the Code
together form an attitudinal umbrella under which all services must
be delivered.
Specifically I interpret Right 1(3)
to mean a requirement to include the four cornerstones of Maori
health mentioned above, and Te Tiriti o Waitangi, which Maori view
as an essential document for the negotiation of wellness. The Code
sits alongside Te Tiriti as a means of achieving oranga through the
empowerment of Maori consumers. The Code does not seek to replace
Te Tiriti but rather to enhance the well being of Maori through
encompassing its principles.
Health and disability services
providers must always keep these matters in mind and not ignore
them. Providers should work to avoid offending against these values
and endeavour to deliver the service in a way which is consistent
with them. Right 1(3) also obliges the provider to take account of
the environment which impacts on the individual and their
whanau.
Right 4
Right 4 deals with consumers' right
to services of an appropriate standard. Of special significance to
Maori consumers is Right 4(3), which gives every consumer the right
to have services provided in a manner consistent with his or her
needs.
Maori consumers often feel that they
are discriminated against, as what they need to ensure their mental
wellness/oranga hinengaro does not fit in with the schedule or
standard procedure followed by a provider.(4) Providers must
recognise this need in order to comply with Right 4(3). Also, a
Maori consumer (who is the provider's guest/manuhiri) may not
object at the time as this would go against their sense of cultural
responsibility to the provider, who is their "host" in this
context. The resulting mental conflict can have detrimental
physical effects. It is critical that when a Maori consumer's
consent is obtained for a procedure that the process of consent is
carried out in a manner consistent with his or her needs, oranga
hinengaro and oranga wairua.
In addition, for Maori certain parts
of the body are tapu and this may need to be taken into account if
examination or treatment involves these parts of the body. The
solution may be as simple as providing facilities for consumers to
wash after a procedure, thereby returning them to a state of "noa"
or "commonness". The right to have such needs taken into account is
provided for in the Code. Right 7, which I will refer to in detail
shortly, is also important here, as it gives consumers the right to
make decisions about the return, disposal, storage and utilisation
of any body parts or bodily substances.
Right 4(4) is also particularly
relevant in the context of Maori 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 legally 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." This is consistent with the
Maori perception of health which is dependent on a balance of
wellbeing in the various aspects of the whanau, the individual's
life and, the surrounding environment i.e. Maori wellbeing is
comprised of spiritual, mental, whanau, physical and, environmental
elements.
Under Right 4(5), every consumer has
the right to co-operation among providers to ensure quality and
continuity of services. This envisages seamless transition between
providers to ensure appropriate care for the consumer, and obliges
providers to take positive steps to ensure that their service is
properly co-ordinated with that of other providers. This right
includes instances where the consumer is receiving services from
providers with quite different thinking on what is appropriate care
for the consumer. For instance, a consumer may choose to see both a
Tohunga and a conventional practitioner. Interaction and
co-operation between each provider, while assisting to facilitate a
co-ordinated approach to the consumer's care, may also increase
awareness of the consumer's wider needs, for example, their
cultural or spiritual needs.
It is also important to note that in
certain situations, the Code's requirement for co-operation extends
to requiring the sharing of relevant information about care and
services with family and whanau-based caregivers to enable them to
provide ongoing quality care to their family member. 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 my 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 5
Of further help to Maori is Right 5,
which gives all consumers the right to effective communication in a
form, language and manner that enables the consumer to understand
the information provided. This places an obligation on the provider
to ensure that information being communicated is able to be
understood, and in some instances this may include the provision of
a competent interpreter where necessary and reasonably practicable.
In addition, Right 5(2) states that 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 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.
Competent interpreting encompasses
elements of training and knowledge (including knowledge of ethics
and the role of the interpreter and the cultural understandings of
illness). Therefore, if it is culturally inappropriate for a son to
interpret his mother's gynaecological condition, for example, then
this should be taken into account as part of the provider's
obligations under Right 1. Similarly, if the consumer expresses a
preference for a female interpreter in such a situation, then the
provider is obliged to provide a female interpreter where
practicable. At the very least, the Code requires the provider to
take reasonable steps to provide a female interpreter in accordance
with the consumer's expressed preference.
Right 6
Right 6 gives consumers a right to
full information and sets out a list of the type of information
consumers should receive to enable them to make choices about
health and disability services. While Right 6(1) states that every
consumer has the right to the information that "a reasonable
consumer, in that consumer's circumstances, would expect to
receive", providers should bear in mind that may Maori consumers,
particularly older Maori, often have no expectation of what is
happening or will happen to them.
In addition, while consumers have
the right to honest and accurate answers to questions about
services, there may be a variety of reasons, including cultural
protocol or even fear, why Maori consumers do not ask any questions
at all. For example, an elderly Maori woman may simply not know
where to begin to ask questions or seek information about services,
choices and decisions which are outside the realm of her
experience. In this respect it is important to remember that
providers will often need to give certain information to Maori
consumers without being asked to do so.
Because a provider cannot presume to
know a consumer's personal circumstances or needs, the information
offered should include the likelihood of success of the various
options; their likely effects and any associated physical,
emotional, mental, social or sexual outcomes; the consequences of
not accepting the proposed treatment; the costs of treatment and
any financial interest of the provider. Providers may explain which
option they recommend and why, but must accept that the consumer
has the fundamental right to choose as well as a right to seek a
second opinion. This may include taking time to consult with whanau
so the consumer can advise the provider of his or her decision made
in a collective way.
Ultimately, the obligations under
Right 6 often require providers to make certain judgements about
the information they should give. While the consensus of medical
opinion as to what information should responsibly be given is
relevant, it is not the final determining factor in terms of the
Code. Good communication between consumer, whanau and provider is
essential in getting the balance right.
Right 7 - Informed
consent
Right 7(1) provides that services
may be provided to a consumer only if that consumer makes an
informed choice and gives informed consent, except where any
enactment, or the common law, or any other provision of the Code
provides otherwise.
In terms of the Code, informed
consent is a process rather than a one-off event, and can only
occur where the consumer has been supplied with sufficient
information in a form he or she can understand (see Rights 5 and 6,
above). Usually, consent will be verbal. However, Right 7(6) also
requires consent to be in writing in certain situations, for
example, where a consumer is to undergo a general anaesthetic or
there is a significant risk of adverse effects on the consumer.
Sometimes a consumer may be unable to sign a consent form or may
prefer not to do so for cultural reasons. In these cases, verbal
consent is still required, and the provider should make a full and
accurate record of the steps taken to obtain consent.
Right 7(2) states that every
consumer must be presumed competent to consent, unless there are
reasonable grounds for believing that the consumer is not
competent. For instance, where a consumer is unconscious, has an
intellectual disability, or is a child, he or she may not be
competent to give informed consent to a particular service.
Accordingly, for the purpose of informed consent, the Code includes
in the definition of 'consumer' those persons who are entitled to
consent on behalf of the consumer, for example, the parents or
guardians of a 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 well being but who are not the consumer's legal
representative. However, there will be times when the views of such
people may well have to be taken into account before services are
provided, in instances when a consumer is not competent to consent
and no one legally entitled to consent on his or her behalf is
available. Right 7(4) of the Code details the steps to be followed
in such cases.
I would like to illustrate this by
referring briefly to an example on which I was recently asked to
provide comment - that is, organ donation and removal, and
retention and return of body parts.
In addition to the Code rights
already discussed, the Code also sets out specific rights in
respect of the removal and use of an individual's body parts and
bodily substances. Right 7(9) gives every consumer the right to
make a decision about the return or disposal of any body parts or
bodily substances removed or obtained in the course of a health
care procedure; and Right 7(10) then states that any body parts or
bodily substances removed or obtained in the course of a health
care procedure may be stored, preserved, or utilised only with the
informed consent of the consumer.
These provisions apply whenever it
is proposed that body parts or substances be removed from a
consumer's body, regardless of the reason for removal. Therefore,
before attempts are made to obtain consent from the consumer, the
consumer should be fully informed about the proposed process for
removal, the reason for removal, what the part or substance is to
be used for, and any options the consumer has in respect of those
parts or substances (e.g. return or disposal.)
Where the provider is considering
removing body parts or substances from a consumer who for any
reason lacks the competence to consent, the provider should first
try to ascertain the views of the consumer on the matter. This may
be achieved through previous discussion with the consumer, in
accordance with Rights 7(5) and 7(9) of the Code through an advance
directive, such as an organ donation card or driver's licence.
If the provider is unable to
ascertain the consumer's views, then the provider should raise the
matter with suitable persons, such as members of the consumer's
whanau, or a Kaumatua or Minister, who have a sufficient
relationship with the consumer to enable them to advise the
provider. Good practice includes informing these suitable persons
of all the relevant information needed to express a view on the
matter. Ultimately, before a procedure can go ahead, the provider
is also obliged under Right 7(4) to consider the best interests of
the consumer and, in this respect, this should occur in a manner
which takes into account the sensitivity of the situation and the
needs, beliefs and values of the consumer and his or her
whanau.
Right 8
Right 8 states that every consumer
has the right to have one or more support persons of his or her
choice present, except where safety may be compromised or another
consumer's rights may be unreasonably infringed. This right
recognises the importance of the participation of whanau in
achieving individual wellbeing and specifically provides for whanau
to be present. Where an individual wishes to have the support of
whanau, Right 8 empowers him or her to take a more positive role in
communicating with the provider and participate in decision making.
However, it is important to remember that the choice as to the
presence and identity of support persons is that of the consumer.
Therefore, where an individual chooses not to have whanau support
for whatever reason, this decision must also be respected.
Right 10
Right 10 gives every consumer the
right to complain. Providers must comply with all the relevant
rights in the Code when dealing with complaints. Of particular
importance in this context are Rights 1(1) and 1(3), Right 2 and
Right 8.
While the Code gives the individual
consumer the right to complain, under the Health and Disability
Commissioner Act it is possible for anyone, including a member of
an individual's whanau, to complain to the Commissioner or an
independent advocate where it appears that the Code may have been
breached. However, before I investigate a complaint the consumer's
wishes are taken into account and he or she must usually be willing
for the complaint to proceed.
Therefore, Rights 1, 8 and 10 of the
Code allow for whanau hui as a means of resolution of complaints.
In addition, my ability to call a mediation conference under
section 61 of the Act potentially gives whanau a further
opportunity to provide input into the resolution of complaints.
(4) In this respect, see also Right
2 of the Code which gives every consumer the right to be free from
discrimination, coercion,harassment, and sexual, financial or other
exploitation.
6. Conclusion
The Code of Rights has the potential
to contribute to improving Maori health status by assisting in the
empowerment of individuals and, through individuals, of the whanau.
I challenge you all to use the Code to achieve this aim.
Consumers, for you and your support
persons, whether they be friends, family, whanau or others, it is
not enough to know that these rights exist. Nor is it enough to
wait until there is a major problem and call the Commissioner.
These rights are yours. Use them on a daily basis as your guide and
insist on quality, professional, co-ordinated services.
Providers, remember that your role
is to serve the consumer and assist in maximising their quality of
life. Your focus must always be on the consumer. Take the time to
stop and listen to consumers, their families, whanau, and other
providers.