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Unravelling the Code
The Code of Health and Disability Services Consumers'
Rights
Significant Issues and Developments
1. Introduction
The Code of Health and Disability
Services Consumers' Rights came into force on 1 July 1996. Its
incorporation as regulation under the Health and Disability
Commissioner Act 1994 gives New Zealand a unique place in the
medico-legal world. No other country has a Code which gives
consumer rights the force of law. While the Code is gradually
becoming known by both providers and consumers in the health and
disability sector, the path to acceptance of its ten rights has not
been without some debate - although I would have to say that very
little has arisen during the first 21 months of the Code's
operation to indicate fundamental difficulties with the Code
itself. Today I would like to focus on some of the issues which
have arisen from the application of the Code during these early
months.
2. The Commissioner's
Legislation
Health and Disability
Commissioner Act 1994
The authority for the Code and its
content is the Health and Disability Commissioner Act 1994. The
purpose of the Act is defined in section 6 as:
to promote and protect the rights of
health consumers and disability services consumers, and, to that
end, to facilitate the fair, simple, speedy, and efficient
resolution of complaints relating to infringements of those
rights.
This objective is achieved through
the implementation of the Code, the establishment of a complaints
process to ensure enforcement of the rights contained within it,
and through the ongoing education of consumers and providers. While
I will be discussing the Code as the primary means of achieving the
first part of this objective, other members of my staff will speak
about the complaints process which has been established to ensure
enforcement of these rights, and the interface between this process
and that of the health professional bodies. Later in the morning I
will also address my role and jurisdiction as Commissioner, as it
is defined by the Health and Disability Commissioner Act and as it
has been interpreted judicially, and will look at the powers given
to the Commissioner to carry out this role.
The Code of Health and
Disability Services Consumers' Rights
The application of the Code is
extensive and covers the breadth of all providers of services in
the health and disability sector. It covers any person or
organisation providing or holding themselves out as providing a
health care service to the public, whether that service is paid for
or not. This includes all registered health professionals and
hospitals, and extends to alternative health providers. The
definition of a disability services provider is even wider as it is
not limited to those providing services to the public. Arguably the
Code extends to those caring for a family member with a disability
within their own home. The Code therefore brings a degree of
accountability to practitioners who are beyond the medical
mainstream - naturopaths, homeopaths, acupuncturists, rest homes,
etc - professions which have been exposed to little regulation in
the past. It has particular advantage for the elderly and
disability service consumers who previously had little
protection.
There are 10 rights in the Code:
1. the right to be treated with respect
2. the right to freedom from discrimination, coercion,
harassment, and exploitation
3. the right to dignity and independence
4. the right to services of an appropriate standard
5. the right to effective communication
6. the right to be fully informed
7. the right to make an informed choice and give informed
consent
8. the right to support
9. rights in respect of teaching or research
10. the right to complain
Clause 1 of the Code requires
providers to inform consumers of their rights and enable them to
exercise those rights. However, the rights in the Code are not
absolute - Clause 3 states that providers are not in breach of the
Code if they can show they have taken "reasonable actions in the
circumstances to give effect to the rights, and comply with the
duties" in the Code - a matter which must be decided on the
particular facts of each case I consider. It is important to
remember that compliance with the Code is not an "all or nothing"
matter. If circumstances are difficult, the obligation on the
provider is still to take all reasonable steps to comply with the
Code as much as possible in those circumstances. The Code does not
override other legislation and nothing in the Code requires a
provider to act in breach of any duty or obligation imposed by any
enactment or prevents a provider doing an act authorised by any
enactment.
While I am not able to give advance
interpretations of the Code, and there is insufficient time this
morning to discuss each Code right in detail, I would like to
discuss the Code's application in those areas which to date have
given rise to the majority of complaints to my office. My comments
will therefore be under the four broad headings - the right to
respect, the right to appropriate standards of service, the right
to informed consent, and the right to complain.
3. The Right to Respect -
The "Key to the Code"
The right to respect is the
cornerstone of the Code. The Code is about people and respect for
the intrinsic value and uniqueness of each individual underlies all
the rights within it. It is not coincidental that respect is listed
as the first of the rights in the Code.
Closely associated with Right 1 are
the rights to fair treatment (Right 2), to support (Right 8) and to
dignity and independence (Right 3). The latter right is of
particular importance to consumers of disability support services.
While the provision of any service, particularly a disability
service, entails a degree of dependence on the part of consumers,
Right 3 directs providers to always keep in mind the objective of
providing the service so as to optimise the consumer's independence
and quality of life. The first three rights of the Code together
form an attitudinal umbrella under which all services must be
delivered. If providers conduct themselves in a manner consistent
with these rights, and if they communicate effectively with
consumers, the likelihood of complaints is markedly reduced.
One issue of interpretation which
has arisen is the meaning of the right to privacy contained in
Right 1 of the Code. The Act states that the Code can deal with
matters of privacy other than those dealt with by the Privacy
Commissioner. The right to privacy in the Code is therefore not a
right to personal information privacy, but a right to personal
physical privacy. The distinction between the two is not always
clear cut however, and there will sometimes be an overlap. For
example, where the lack of an appropriate private space means that
information is given in the presence and hearing of others, a
possible breach of both the Health Information Privacy Code and the
Code of Rights may occur. Where this happens, I have the ability to
consult with the Privacy Commissioner to decide how best to deal
with the matter.
4. The Right to Services of
an Appropriate Standard
All consumers have the right to
receive services of an appropriate standard. Prior to the
implementation of the Code, many aspects of health and disability
service standards were already regulated by statute or regulation,
with a number of statutes regulating health professional groups,
and their registration and discipline. However, this legislation
traditionally focused on enforcing standards of clinical practice,
and the disciplinary mechanisms under such statutes were unable to
adequately resolve Consumers' complaints on other matters. The Code
provides a framework for addressing professional standards in a
wider context. This context includes the guiding principle that the
service is to be consumer-focused, not provider oriented.
Accordingly, Right 4 of the Code - along with all the other rights
in the Code - applies to all providers, not just those who are
registered, or for whom legislation has historically provided.
Right 4(1)
Right 4(1) states that every
consumer has the right to have services provided with reasonable
care and skill - the standard on which the common law of negligence
is based - and I can receive complaints about acts or omissions
which fail to meet this standard. The potential scope of this Right
is very broad and covers everything from a pharmacist incorrectly
labelling and dispensing medication, to a Crown Health Enterprise
failing to provide a system for storing quarantined products
separately from non-quarantined products, to a midwife allowing an
inappropriate time delay to occur before obtaining a consultant
referral during a consumer's labour.
Sometimes a provider's failure to
meet the standard of reasonable care and skill may lead to a
consumer's death. It is significant that the Code covers such
situations. Medical professionals are now less likely to be
prosecuted for manslaughter due to a recent amendment to the
criminal law which requires their conduct to be a "major departure
from the standard of care expected of a reasonable person - in
those circumstances." The Code of Rights and the complaints process
of the Health and Disability Commissioner Act still provide an
avenue for redress and accountability in circumstances where the
departure from an acceptable standard of care fails to meet this
new criminal law standard. Indeed, I am empowered to investigate
not only individual providers, but also the systems behind the
provision of service - a matter not previously addressed by the
criminal law in "medical manslaughter" cases.
Right 4(2)
Right 4(2) gives every consumer the
right to have services provided that comply with legal,
professional, ethical, and other relevant standards. The Code is
therefore a means by which standards set by other bodies can be
enforced. However, a matter which has given me cause for concern in
recent months is the absence in many sectors of industry standards
against which conduct can be assessed. Safety and quality standards
are not always clearly defined, and where providers are not
formally regulated, there are sometimes no suitable standards by
which conduct can be measured. In these situations the accepted
practice of other providers may indicate the standard to be met. If
no standards are set, I may also interpret Right 4(2) with
reference to appropriate overseas standards. Alternatively, by
forming an opinion as to what is reasonable in the circumstances, I
myself effectively set a standard. This, at the very least, has the
advantage of prompting debate on the matter within the relevant
sector.
While Parliament has a part to play
in setting standards, I believe that responsibility for
establishing and maintaining quality standards ultimately lies with
provider groups themselves. These standards must be consumer
focused and input is needed into their development by consumers.
The Code is not, and should not be, the primary mechanism for the
establishment of standards. As general Code awareness improves, and
provider groups recognise that I will define applicable standards
in the absence of industry based standards, I envisage greater
provider responsibility for standard setting. Those groups adopting
voluntary standards should be aware that the Commissioner will use
them in assessing compliance with the Code of Rights. In this
sense, what may be perceived or intended as voluntary standards can
become de facto regulation. I also hope that the development of
opinions on the Code will, over time, help entrench an
understanding of, and responsibility for, the provision of
consumer-focused, quality care. However, I note that both "de
facto" regulations or standards set by providers will not of
necessity be accepted as "appropriate". They may not be
"reasonable" in the circumstances or meet an individual consumer's
requirements or meet international standards.
Right 4(3)
Right 4(3) gives every consumer the
right to have services provided in a manner consistent with his or
her needs. It has been argued by some that this confers a right of
access to services consistent with needs. Such an interpretation is
unlikely to be upheld. The Health and Disability Commissioner Act,
on which the Code is based, makes it clear that the Code applies to
the quality of services actually provided. It gives no authority
for the Code to extend to purchasing decisions. Furthermore, the
wording of Right 4(3) itself refers to the "manner" in which
services are provided, rather than the fact of provision itself.
While initially there was some confusion over the application of
the Code to purchasing criteria and funding matters, its scope now
seems to be understood by most of the consumers who make a
complaint.
Right 4(4)
Obviously, if a consumer suffers any
harm, physical or otherwise, as a result of the provider's actions,
the Commissioner may find the provider in breach of the Code.
However, it is interesting to note that the Commissioner's ability
to find a breach of the Code goes further than that. Actual harm is
not a necessary element for such a finding. Right 4(4) provides
that services must be provided in a manner that minimises potential
harm to a consumer and optimises his or her quality of life.
Providers must therefore have in place safety management systems by
which risks to consumers are identified and managed.
Right 4(5)
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. For example, it
is important that providers hold sufficiently detailed and accurate
records of the service provided, and transfer relevant information
to subsequent providers to allow them an adequate picture of the
consumer so that quality services can continue to be provided.
The health and disability sector is
extremely complex. Individual providers do not provide care in
isolation from other parts of the sector and it is important that
all providing service and supporting the provision of service
recognise their interdependence. My experience over the last 21
months has been that lack of communication between providers and
the inability to look beyond one's own individual part in the
provision of service is one of the major issues in the sector
today.
5. The Right to Informed
Consent
Another issue, central to the Code,
is the right to make an informed choice and to give informed
consent. Informed consent is not a one-off event, but a process
containing three essential ingredients, namely,
- effective communication between the parties,
- provision of all necessary information to the consumer
(including information about options, risks, benefits and costs),
and
- the consumer's freely given and competent consent.
These ingredients work together and
are represented in the Code by Rights 5, 6 and 7 respectively. Each
one of these rights protects a fundamental component of the
informed consent process. Although emphasis is often placed on the
more technical Right 7, my experience has been that many complaints
boil down to a simple lack of proper communication between the
parties. I will therefore address all three rights.
Effective Communication and
Interpreter Services
Right 5
Right 5 of the Code gives every
consumer the right to effective communication in a form, language,
and manner that enables the consumer to understand the information
provided. Where necessary and reasonably practicable, this includes
the right to a competent interpreter. 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. Experience to date has shown that most complaints
stem from poor communication, and many negative outcomes can be
traced to unnecessary misunderstandings between the parties.
Providers need to take all
reasonable steps to ensure that they provide consumers with
sufficient information, in a form which they can understand, and in
an environment which facilitates open, honest and effective
communication. Creating such an environment might include allowing
an appropriate amount of time for the consultation, using
culturally appropriate methods of communication, using plain
language, providing written or visual explanations, and considering
the needs of consumers who require the assistance of an
interpreter.
The requirement for an interpreter
to be provided in certain situations has given rise to considerable
comment, especially within the medical profession. While all agree
that the requirement is good in theory, many regard adherence to
this requirement as unworkable in practice. However, it is
important to remember that an effective service cannot be
delivered, and Right 4 of the Code cannot be met, if a provider is
unaware of the full nature of the symptoms and the consumer fails
to understand the requirements of ongoing treatment. Accordingly,
if not having an interpreter means that a provider's obligation to
provide services with reasonable care and skill cannot be met, then
it is my view that no services should be provided.
As always, the test for whether the
provider has met the Code's obligation to provide interpreter
assistance will depend on whether the provider took reasonable
steps to facilitate the best interpreter services available in the
circumstances. A consideration of practicalities is built into the
Code and the particular circumstances of both the provider and
consumer will be taken into account in deciding if the obligation
has been fulfilled.
For example, a sole GP on the West
Coast is unlikely to be able to obtain a low cost Korean
interpreter for the occasional tourist that happens to get sick. In
this instance, the most reasonable step will probably be to rely on
the consumer's fellow tourists, friends or family. On the other
hand, it is likely to be "reasonably practicable" for a general
practitioner in South Auckland servicing a largely Samoan
population to arrange for interpreter services where these are
needed.
Information the Consumer
Should be Given
Right 6
Consent is not valid unless it is
given with complete understanding of what is being consented to.
The Code is clear that services can be provided only if the
consumer chooses and gives consent which is informed. Accordingly,
Right 6(2) of the Code gives consumers a right to information that
a "reasonable consumer in the consumer's circumstances" needs to
make an informed choice or give informed consent. In addition,
Right 6(1) gives consumers a right to the information that they
would expect to receive, irrespective of whether a particular
choice is being made, and sets out a list of such information. The
list is not an exhaustive one, but rather is indicative of the type
of information a provider should make available. In addition,
consumers are entitled to honest and accurate answers to questions
about services, and are entitled to receive, on request, a summary
of information provided.
In practice, the obligations under
Right 6 require the provider to make certain judgements, for
example, as to the "expected risks" associated with a proposed
medication or treatment, and what the "reasonable consumer in that
consumer's circumstances" would want to know. The consensus of
medical opinion as to what information should responsibly be given
is relevant, but is not the final determining factor in terms of
the Code. Good communication is essential in getting the balance
right.
The language of Right 6 focuses on
the concept of "choice" as well as the more traditional concept of
"consent". This is to emphasise that the Code envisages consumers
taking an active role in decision-making. If consumers are to be
empowered to make choices, it is important for them to be advised
of all their treatment and care options, not just those which are
publicly funded. This is particularly important given that the
Health Funding Authority may not always fund the full range of
available treatment options. However, I would emphasise that in
communicating effectively and giving options, providers should be
careful to do so from the consumer choice perspective and not
involve personal political views or lobbying views, as this may not
be considered professional.
Because a provider cannot presume to
know a consumer's personal circumstances or needs, the information
offered to a consumer 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
should explain which option they recommend and why, but must accept
that the consumer also has a right to seek a second opinion.
Consent and the Presumption
of Competence
Right 7
Right 7 of the Code is perhaps the
most technical of all the Code Rights and has generated a number of
enquiries about its application. In particular, questions have
arisen with regard to issues of competence and the giving of
consent. I would like to briefly clarify the Code's application in
this context.
Right 7(1) requires that services
may be provided only if the consumer makes an informed choice and
gives informed consent, except where any enactment, the common law
or the Code itself provides otherwise. Right 7(2) then contains a
presumption of competence. Following on from this, Right 7(3)
states that where a consumer has diminished competence, that
consumer retains the right to make informed choices and give
informed consent to the extent appropriate to his or her level of
competence.
The fact that a consumer has, for
instance, an intellectual impairment or severe behavioural problem
does not necessarily mean that he or she is incompetent to consent
to all health and disability services. The provider must focus on
the ability of the consumer to understand the information necessary
to give informed consent. This will depend on the individual
consumer and the type of service. For example, the level of ability
necessary to consent to treatment with a high degree of risk or
complexity or with serious consequences for the consumer will
usually be different from that required to consent to minor and low
risk procedures. In assessing the consumer's competence to consent,
the provider may wish to check with other experts or take into
account the views of caregivers or support persons. The assessment
of a person's competence is itself a health procedure which should
be performed with "reasonable care and skill" under Right 4(1) of
the Code. In every case it is important to remember that while
consumers may not be entitled to consent due to a lack of
competence, the Code still gives them rights and protections.
Providers must supply them with information about the procedure or
service suitable to their age, maturity and interest, and this
information must be communicated in a form, language and manner
that enables them to understand.
Right 7(4) sets out a procedure that
must be followed before a service is provided in situations where
the consumer is considered incapable of giving informed consent.
This procedure must be adhered to unless one of the exceptions
maintained in Right 7(1) applies, for example, where an emergency
situation exists. The first requirement of Right 7(4) is that the
provider must attempt to obtain informed consent from someone
entitled to give consent on the consumer's behalf, such as a parent
or welfare guardian. If someone legally entitled to consent is
available, that person has the right to give informed consent as if
they were the consumer. For the purposes of the informed consent
provisions, the Code's definition of "consumer" includes a person
entitled to give consent on the consumer's behalf.
If no-one legally entitled to
consent on the consumer's behalf is available, the remaining steps
set out in Right 7(4) must be followed. An important requirement is
that the proposed service must be in the best interests of the
consumer. This may involve a clinical assessment by the provider of
the need for treatment. The "best interests" test may also move
from the narrow clinical focus to a wider inquiry as to what would
be appropriate in the particular consumer's circumstances,
including considering the consumer's quality of life after the
treatment. A clinical decision about what is in the best interests
of the consumer is not the end of the matter however. In addition,
the provider must take reasonable steps to ascertain what the
consumer would have wished to happen if he or she were competent.
Services should only be provided where they are consistent with the
consumer's views or, where these views cannot be ascertained, where
the views of other suitable persons able to advise the provider
have been taken into account. It is not a matter of obtaining
informed consent from a "suitable person", as the premise on which
Right 7(4) is based is that no one who is legally entitled to
consent is available. Rather, it is a matter of the provider taking
into account the views of such persons in deciding whether
treatment would be appropriate.
6. The Right to
Complain
Right 10
Complaints are a means of monitoring
the strengths and weaknesses of both systems and staff. 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 service they receive and sets out the basic requirements
of a complaints process.
Consumers can complain in any form
appropriate to them. Complaints may be made directly to the
provider, any person authorised to receive complaints about the
provider, or any other appropriate person, including independent
advocates provided under the Health and Disability Commissioner
Act, or the Health and Disability Commissioner. Every provider is
obliged to facilitate the fair, simple, speedy and efficient
resolution of complaints, while at the same time complying with all
other relevant rights in the Code. In particular, the complaints
process must use procedures that keep consumers informed and in no
way must a complaint jeopardise the provision of service.
Resolution of complaints
directly with provider
In most cases, resolution of
complaints is best achieved by the consumer speaking directly with
the provider. This enables the parties to understand the issues
which led to the complaint and assist in ensuring that these are
not repeated. It is usually easier for providers to address a
complaint directly and put in place whatever changes are necessary,
than to be subject to an investigation by my office with the
formality this entails. It is important that consumers know that
they can have the assistance of a support person of their choice or
can seek advocacy assistance during this process.
7. Conclusion
The Code of Rights is unique, and
its provisions fundamental to the maintenance of the integrity,
dignity and independence of every individual consumer in the health
and disability sector. Compliance with the Code leads to consumers
becoming empowered - and providers are duty-bound to ensure that
this occurs. While my role as Commissioner is to act as a
"watchdog" for consumer rights and ensure that the purpose of the
Health and Disability Commissioner Act is achieved, the success of
the Code as consumer legislation will ultimately depend on the
skill with which providers communicate with those receiving
service.