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The Code of Rights and Methadone Treatment

1. The Act

 

From 1 July 1996 the Health and Disability Commissioner Act 1994 became the primary vehicle for dealing with complaints about any health service provider or any disability support service provider in New Zealand. From that date the Code of Health and Disability Services Consumers' Rights came into effect and with it a national system of independent consumer advocacy and complaints processing.

It is a key element in the new environment of consumer-focused and consumer-accountable health and disability services, and was supported by and owes its origins to work done by both major political parties.

Purpose

The purpose of the Act is 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.

2. The Code

The Code takes the form of regulation under the Act. The rights contained in the Code therefore have the force of law. The development of a Draft Code was the first task of the Health and Disability Commissioner, and was completed in October 1995 after nine months of consultation and drafting. The final Code of Health and Disability Services Consumers' Rights became law in May 1996 and took effect from 1 July 1996.

There are 10 rights defined in the Code. They are:

1. the right to respect

2. the right to fair treatment

3. the right to dignity and independence

4. the right to proper standards

5. the right to effective communication

6. the right to be fully informed

7. the right to make informed choices and give informed consent

8. the right to support

9. rights when taking part in teaching and research

10. the right to complain.

3. Scope of the Legislation

The Code of Rights deals with quality of services throughout the health and disability sectors, whether public or private, paid for or not. It does not govern which services are or are not provided. This means that my office does not have jurisdiction over complaints about funding or entitlement to services. The Code nevertheless ensures that all health and disability services, including methadone treatment programmes, are consumer focused and respect certain fundamental consumer rights. This can also have a bearing on consumers while they are waiting to receive service. For example, the right to be informed means that those who undergo tests to determine their eligibility must be given the results of those tests. If they are placed on a waiting list for admission to a programme they have a right to know when they can expect to start receiving the service. Those who are involuntarily discharged from a programme likewise have the right to results of tests and the right to complain.

In 1996, the Ministry of Health commissioned a paper on the delivery of treatment for people with opioid dependence in New Zealand. My office had already received a number of enquiries and complaints in relation to the delivery of methadone and was able to look at some of the issues in the context of the Code of Health and Disability Services Consumers' Rights. Some of the matters I now want to cover were raised in my response to that paper. I understand that Barbara Arnold of the Ministry of Health will be discussing the paper in a workshop tomorrow. It will be useful to consider my comments when discussing the issues raised in that workshop.

While the Code in its entirety applies to methadone services, I will address the following Code rights in particular as they have a particular bearing on issues which have come to my attention:

• Right One - Respect
• Right Four - Appropriate standards of service
• Right Ten - Complaints

4. The Code of Rights in the Context of Methadone Treatment

The Ministry of Health Protocol for Methadone Treatment declares five objectives for treatment: to reduce the spread of diseases, to reduce crime, to reduce death and illness, to improve health and social functioning and to assist with withdrawal where appropriate. This puts the service in a somewhat unusual situation. Most health services treating individuals for a condition have the wellness of the consumer as their exclusive focus. Some aspects of the objectives in the protocol for methadone treatment are obviously general public health or social objectives.

I do not wish to imply that there is anything improper about this. Rather I want to give a reminder that programmes of this nature may pose special risks to the rights of the individual, comparable in some sense to measures authorised to prevent the spread of notifiable diseases. In fulfilling these wider social objectives, methadone programmes must not lose sight of the rights of individual consumers.

Respect

The object of the Code is to ensure that everybody receiving a health or disability service receives that service in accordance with certain fundamental consumer rights. The foundation of these rights is embodied in Right 1 - the Right to be Treated with Respect.

An inevitable imbalance of power occurs when a provider becomes the sole legitimate source of an addictive drug. This is a risk factor placing the consumer in danger of being dismissed as an individual without proper consideration or respect. When we consider this in addition to the risk already posed by the wider social objectives of treatment programmes, we can see the crucial importance of the Code of Rights to methadone consumers.

Obligation of providers to respect privacy

Privacy is a fundamental component of respect, and Right 1(2) of the Code entitles the consumer to "have his or her privacy respected."The Act specifically excludes the Commissioner from receiving complaints about privacy of health information, so privacy in the Code context refers to physical privacy.

A common privacy issue for methadone consumers is the taking of observed urine samples. Section 14.3 of the Ministry Protocol states that "it may be necessary to observe the passage of urine on some occasions."

Most people would feel this is an invasion of privacy. Clearly some form of drug testing is necessary in a treatment programme and the prevailing method is the urine test. Equally clearly, effective steps must be taken to ensure the integrity of the sample. How are providers to achieve this while meeting their obligations under the Code?

Clause 3 of the Code obliges providers to take all reasonable actions in the circumstances to give effect to the Code rights. They must show that they complied with the Code as much as possible in the circumstances. Each case will depend on its own individual facts and I cannot lay down hard and fast rules about what will, or will not, breach the Code.

However, I can say that to avoid being found in breach of the Right 1(2) a provider must show that all reasonable steps were taken to accord the consumer privacy. This may well involve showing that it took steps to explore alternative means of testing and that such means were not available or acceptable. I therefore encourage services to explore any possible alternatives to observed urine testing.

If an observed urine test is shown to be appropriate and necessary it must be done in a manner which respects the privacy of the consumer to the greatest extent possible.

Steps to accord the consumer privacy will extend to the question of where and how the test is administered and by whom. The Ministry Protocol specifies "in appropriate environment for taking urine samples" and states that "staff of the appropriate gender should be involved"

Specifying gender may not be enough. Many people would expect the observation of passing urine to performed by someone with clinical qualifications, specifically a nurse or doctor. I understand that some programmes send consumers to an external laboratory where the procedure is administered by clinical personnel.

Privacy is subjective, varying not only from person to person but from culture to culture. Right 1(3) gives consumers "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" Taking all this into account, I would recommend that providers avoid, if at all possible, using lay counsellors and other non-medical staff to administer observed urine tests. It may happen from time to time that special circumstances exist which make this necessary, but the onus is on the provider to demonstrate that this was the case.

5. Appropriate standards of service

Right 4 of the Code states:

1) Every consumer has the right to have services provided with reasonable care and skill.

2) Every consumer has the right to have services provided that comply with legal, professional, ethical, and other relevant standards.

3) Every consumer has the right to have services provided in a manner consistent with his or her needs.

4) Every consumer has the right to have services provided in a manner that minimises the potential harm to, and optimises the quality of life of, that consumer.

5) Every consumer has the right to co-operation among providers to ensure quality and continuity of services.

Several issues relating to the delivery of methadone services arise from Right 4.

Right 4(1) requires that services be provided with reasonable care and skill. It may be stating the obvious to point out that methadone is a dangerous and addictive drug and its administration requires particular care and skill. The recent case of the Christchurch doctor who prescribed large doses of methadone and tranquillisers to a consumer who subsequently died underlines the importance of this obligation. It is sad to note that his actions were motivated by frustration with the very long waiting times for access to the authorised methadone service.

Right 4(2) refers to professional, legal, ethical and other relevant standards. In this matter I have particular concerns about the current standards for methadone treatment in prisons. The Department of Corrections "protocol for Methadone Treatment Programmes in Prisons" states the aim to "reduce and, or, eliminate the dependency on addictive drugs by people remanded in, or sentenced to prison." It goes on to specify 21 days as the withdrawal period for prisoners which under special circumstances may be extended to 42 days.

I have concerns about the appropriateness of applying this withdrawal regime to people who are on a legitimate, prescribed programme of medication, particularly in the matter of remand prisoners who are in a methadone programme when admitted to prison. Many of these will not go on to be convicted and sentenced to imprisonment.

The withdrawal from a high dose of methadone maintenance over a period of 21 days may not be consistent with prevailing standards for planned withdrawal and would probably not be carried out in any accredited methadone programme. Such a regime is likely to cause the consumer considerable discomfort and is unlikely to result in lasting abstinence. Even 42 days would in many circumstances be insufficient. Of particular concern is the fact that current protocols issue by the Ministry of Health state "to assist individuals to achieve a successful withdrawal" as an objective of treatment and yet the protocols give us no guidance at all in relation to this.

I must consider each case on its own particular facts and therefore cannot declare in advance that any particular course of action would definitively be a breach of the Code. However, the universal implementation of this protocol without discussion between providers clearly holds the risk of breaches as does inconsistent application of withdrawal programmes by RHA funded providers.

The Ministry's commissioned paper on the treatment of opioid dependence suggested that "special therapeutic opportunity exists to initiate treatment, particularly for those opioid dependants who are in the Justice Service as a direct result of their condition" and that there is a potentially great societal benefit through them being provided with appropriate treatment. I agree. The Department of Corrections Protocol is scheduled for review. I welcome that review and hope that the Department will be consistent with the principles of the Code of Rights. I will be happy to provide input into the review and the Department has already visited me in relation to this matter.

I believe that suitable training should be required to ensure delivery of services of an appropriate standard. This includes training for GPs and pharmacists, and also includes prison staff, in order to maintain services of an appropriate standard for all methadone consumers.

Right 4(3) and 4(4) give consumers the right to services consistent with their needs and services which minimise harm and optimise the quality of life.

I have heard anecdotal accounts of large groups of consumers losing takeaway privileges because a few unidentified consumers may have diverted supplies. The obligation to provide services consistent with an individual's needs should not be prejudiced by the actions of other persons. Where a consumer is required to travel a substantial distance to pick up daily doses and so becomes unable to hold down a job it is hard to argue that the service is being delivered in a manner "onsistent with his or her needs' or that it's optimises the quality of life of that consumer"

Right 4(5) gives consumers the right to co-operation among providers to ensure quality and continuity of services. I support an integrated approach to the delivery of health care and liaison between all providers involved in the delivery of methadone treatment. This co-operation should extend to other providers outside the methadone service, such as ante-natal and obstetric carers, mental health services and prison medical staff. The protocol for prisons is explicit that providers must work jointly and yet we are aware that this has not occurred.

In the matter of standards generally it is of concern that approaches to treatment vary from service to service. Different service providers, for example, appear to have differing views on the relative merits of long-term maintenance versus the achievement of drug-free status. Other variations relate to acceptance of GP management of methadone consumers and standards of urine testing. The Ministry paper represented, in part, an attempt to standardise treatment of opioid dependency in New Zealand. I trust that this impetus will continue to a conclusion as it is in the interests of consumers to achieve an integrated, standardised model of care.

6. The Right to Complain

As a general rule, the greater the vulnerability of the consumer, the greater must be the care taken to enable that consumer to complain without fear of repercussion. I have recently released case notes and comments for the rest home industry. I focused on this industry because I had received a significant number of complaints and most of these complaints did not come from the consumers themselves. Obviously some were not able to complain due to age and infirmity but in many cases they would not complain because they were highly dependent on their provider. Methadone consumers are similarly vulnerable. It is in the nature of the service that there will be frequent disagreements relating to breaches of the rules and the consequences - withdrawal of takeaway privileges, withdrawal of GP supervision or even discontinuance of supply. Although the rules exist for the safety of the consumer, their implementation can easily take on the appearance of "reward and punishment"

A clear and speedy complaints process is vital in this context. Right 10 of the Code obliges providers to have in place a process for the handling of complaints, and sets minimum standards for that process. It includes the obligation on providers to inform the complainant of the availability of the Health and Disability Advocacy service and the Commissioner. Thus consumers are made aware of an option outside the service itself if they are not happy with the process or outcome. I would recommend that providers ensure that they have easily accessible processes and that consumers utilise them.

Complaints about access

I believe that those seeking treatment should have available a clear and independent process of complaint and review of decisions about access. The Ministry of Health's Protocol requires, in section 7.3, that services "bill have a clearly described procedure for individuals to seek a review of their situation, particularly when a person is involuntarily discharged or refused access. To parallel the standards of objectivity and fairness available to those who complain about their rights under the Code being breached, I believe that some external process of review of access decisions should also be available. In accordance with my earlier comments about consistency I believe that this avenue, too, should have clear and consistent processes across all services.

Right 2 - the Right to Freedom from Discrimination, Coercion, Harassment and Exploitation.

During consultation on the Code a methadone support group showed me a copy of a letter from a methadone provider to a consumer stating that that if they complained again they would be withdrawn from the programme. Such a letter would now be a blatant breach of the Code. I would like to think that times have moved on and that such incidents, which had a formative effect on the Code, belong in the past. I encourage consumers and providers to adopt the Code of Rights as a fundamental basis for consumer-focused quality of service.