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European Network of (ex-) Users and Survivors of Psychiatry
Secretariat
EUROPEAN DESK
P.O.Box 645
3500 AP Utrecht
The Netherlands

Secretary to the Working Party on Psychiatry and Human Rights
Directorate General I – Legal Affairs
Council of Europe F-67075 Strasbourg
France

Utrecht, October 23, 2000

WHITE PAPER ON THE PROTECTION OF HUMAN RIGHTS AND DIGNITY OF PEOPLE SUFFERING FROM MENTAL DISORDER, ESPECIALLY THOSE PLACED AS INVOLUNTARY PATIENTS IN A PSYCHIATRIC ESTABLISHMENT

Preambule:

The European Network of (ex-) Users and Survivors of Psychiatry (ENUSP) has been running a throughout discussion on the document which should aim to ensure protection of the human rights and dignity of people suffering from mental disorder, especially those placed as involuntary patients, including their right to appropriate treatment.

The European Network is the only European-wide user organisation that is user-runned and user-controlled. Our membership includes organisations from the New Independent States in Eastern Europe as well as organisations from Western Europe.

Various national (ex-)user/survivor organisations are still continuing the detailed discussion. Nevertheless we have the shared concern that the actual outcome could easily become just the opposite of protection.

In ENUSP we question the need for a special legal instrument concerning the human rights of people labelled as mentally ill or having a mental disorder. We want the same human rights, as have all other citizens. Special legal instruments and legislations most often deal with legitimating why we should not have the same human rights as other human beings.

We protest energetically against planned massive discrimination of the human rights of so-called mentally ill and handicapped people which is included in the called "›White Paper‹ on the protection of the human rights and dignity of people suffering from mental disorder, especially those placed as involuntary patients".

On the whole we do not share the ideas of the Working Party, that certain enforced treatment strategies are for the person's own good and should therefore come before the observance of fundamental human rights such as the inviolability of the private home and the individual.

On the principle of informed written consent, each individual person should have full self-determination as regards his/her own treatment, including the right to non-pharmaceutical help/treatment. Also with regard to privacy and the administration of information sensitive to the person involved people labelled as mentally ill or as having a mental disorder should have the same rights as have other citizens.

A treatment against the will shall fundamentally base on the same law principles as in the medical area: treatment with informed consent. The obligation to explain intended treatments and depict risks realistically, against which psychiatric institutions obviously constantly offend, has to be finally carried through. If the person intended to be detained is unable to make a legally recognised declaration, his/her natural will have to be respected. If he/she cannot express his/her natural will, an advance disposition will have to be respected. If this disposition is not recognised, one has to proceed on the assumption of a denial of the consent.

Instead of an expansion of the scope of – not uncontested – psychiatric special laws on "mental illness", which can be all and nothing, only those persons who endanger their own lives or the lives of others by a chronic loss of self control should be denied their freedom and removed to a closed psychiatric clinic – and then only as long as this danger cannot be averted in another way.

In 1994 the Parliamentary Assembly of the Council of Europe adopted a recommendation [Recommendation 1235 (1994) on psychiatry and human rights.] on psychiatry and human rights. Recommendations which, compared with legislation in some European countries, would mean considerable progress as to the rights of psychiatric users. The Assembly pointed out, among other things, that the following rules should be included in a set of rules approved by the Council of Ministers:

Rule i, b: in the event of compulsory admission, the decision regarding placement in a psychiatric institution must be taken by a judge and the placement period must be specified.

Rule ii, b: lobotomies and electro convulsive therapy may not be performed unless informed written consent has been given and unless the decision has been confirmed by a select committee.

Rule ii, e: patients must have free access to an independent counsellor.

Rule iii, c: no mechanical restraint should be used.... there must be no permanent infringement of individuals' rights to procreate.

These rules have not been carefully included in the White Paper, as it is now.

If and when the Council of Europe wishes to work out guiding standards, the Council should, in our opinion, be ahead and point at rules, which will lift the legal position of people labelled as mentally ill. Instead of being ahead, the Working Party has chosen finding the smallest common denominator, which may, more or less, legitimate the lack of basic human rights from which psychiatric users are suffering in most European countries. Instead of increasing the tendencies, which are found in a few countries towards strengthening the basic rights, it seems as if attempts are made to legitimate legal initiatives in some countries, which are weakening the legal position of people labelled as mentally ill and/or as having a mental disorder.

One element in the White Paper should, as seen from our point of view, be emphasised as a step forward: the proposal saying that in future psychiatric involuntary measures are only to be taken in cases which might involve serious danger to the person concerned (including to his/her health) and/or serious danger to other persons (point 3, b.). This means that the treatment criterion found today in the UN recommendations ["Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care" adopted by the UN General Assembly in its resolution 46/119 of 18 February 1992. Principle 11 and 16], in the previous recommendations from the Council of Europe [Recommendation No. R (83)2 concerning the legal protection of persons suffering from mental disorder placed as involuntary patients. Article 3 b], and in national legislations, no longer will apply.

We find, however, that there is a need for tightening up such a purely danger criterion for involuntary measures; the formulation should be: immediate danger to the life of the person concerned or immediate danger to others. The danger criterion should not include danger to the health of the person concerned.

There are indications in the White Paper that in future it shall be possible to treat people involuntarily without preceding involuntary placement/deprival of liberty and outside the psychiatric departments/institutions, e.g. in people's private home (point 3, introduction). We take strong exception to a development within psychiatry resulting in the person's private home being used as the physical frames of involuntary treatment. Involuntary treatment without preceding involuntary placement also conflicts with the mentioned UN recommendations: According to Principle 11 of the UN "Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care" treatment may only be given without the patient's informed consent if the patient is held as an involuntary patient.

We also find it unacceptable that in the White Paper it is legitimated that insufficient possibilities in a country or a region of help and treatment may justify the use of involuntary placement (point 3, d.). We are concerned about this, as the use of compulsion must never be due to lack of necessary services offered from society. Sufficient alternative offers must be aimed at, thus avoiding the use of involuntary measures as much as it may possibly be done.

We are totally unable to understand why the Working Party behind the White Paper is considering that in exceptional cases the possibility of permanent infringement of an individual's capacity to procreate (point 11, 7) should exist. Compulsory sterilisation is a thing of the past, already abolished in many countries. Ideas about eugenics should not be reintroduced by the Council of Europe.

1. The scope of application of a new legal instrument.

In the European consumer movement it is accepted that we are speaking about

users, former users and survivors of psychiatry, each term based on the principle of self definition and determination (which is an inherent human rights).

The European Network is against involuntary treatment in the community because such powers would:

• Increase discrimination against people with mental health problems.
• Be impractical as, for instance, if a person is determined to move away, then in practice it will be very hard to stop this from happening.
• Be used disproportionately against black and minority ethnic groups- we would expect, a higher proportion of black people and people from minority ethnic groups to be subject to these powers.
• Would lead to service avoidance and loss of trust in community support workers.
• Increase the incidence of self harm as result of service avoidance. Loss of trust in workers and services will lead to an increase in suicide attempts, as people shy away from services seen as essentially coercive.

2. The categories included in the concept of mental disorder.

In the European (ex-)users/survivor movement we prefer terms such as (severe) mental, emotional, spiritual distress rather than mental disorder. We are against diagnosis based discrimination, the only acceptable differentiation can be based on the level of legal competency determined by the court using independent expert opinion and direct hearing of the person involved and his/her advocate.

3. The criteria for the involuntary placement in a psychiatric establishment and for the involuntary treatment.

According to the European (ex-)user/survivor movement the only acceptable ground for involuntary placement can be the direct immediate danger to the life of the person concerned or immediate danger to other persons. Involuntary treatment should only legally be applied in case of situations, which are immediate, absolutely and apparently life threatening to the person concerned.

Suspect of a danger is not a sufficient condition for involuntary act. Also we should treat involuntary placement and involuntary treatment separately.

In most cases (when direct severe danger is present) involuntary placement (and a possible proper and legally justified) restraint is sufficient to prevent harm and self-harm.

In these cases involuntary treatment can not be imposed.

There must always be an appeals procedure.

4. The procedures for taking a decision of involuntary placement and of involuntary treatment.

Court decision in as short period as possible (12-24 hours). Apply for legal aid. An appeals procedure must be foreseen.

No ECT and neuroleptic treatment or any other irreversible treatment can be initiated before the court decision. Independent expert opinion and the involvement of a lawyer and/or the substitute decision maker named by the patient should be also involved.

Advance directives or psychiatric wills should be respected.

If there is no advance directive / psychiatric will or substitute decision-maker available, the local (ex-)user-survivor organisation should be consulted. Consent from a guardian or family member can not replace the above measures, as often there is an explicit conflict of interest between the patient and the guardian/family member.

5. The procedures for involuntary placement and treatment in cases of emergency.

Only life saving treatments (or treatments explicitly consented in advance directive) should be carried out until the court makes the decision with the involvement of an independent expert and substitute decision maker or patients rights advocate.

6. Involuntary treatment – specific conditions.

7. Special treatments.

No controversial treatments (ECT, lobotomy, psychosurgery) should be carried out on involuntary patients. Second opinion must be available. Informed consent is the guideline!

At the very least, any new legislation needs to apply the strictest possible safeguards. In particular:

• It should certainly never be given compulsorily to anyone whether they retain capacity or not.
• It should never be used as an emergency treatment
• It should not be given at all to the young and to pregnant women.
• Legislation should specify the responsibility for the safety of equipment, imposing a legal duty on clinics to monitor equipment with penalties for those who do not.
• Safety standards during these treatments should be comparable with those provided when procedures are carried on under general anaesthetic in general hospitals.
• the users being asked to consider this treatment be given full and balanced information, including risks and side-effects as disclosed by those who have had this treatment previously and in recent research.
• The treatment should be the subject of a genuinely independent inquiry as soon as possible.
• There should be strict monitoring to include ethnicity and morbidity.

8. The involuntary placement and treatment of minors.

The same guarantees as for adults with even more precaution. Court should investigate if there is a conflict of interest between the minor (patient) and the parents (guardians). In that case consent from the parents/guardians must not replace an independent expert opinion and a substitute decision maker (named by the patient if available) or patients rights advocate.

9. The involvement of the police, courts and the prison system in the involuntary placement and treatment.

Police and prison should be involved only in criminal cases. Courts should always be involved in making a decision on involuntary placement/treatment.

10. Research on people suffering from mental disorder placed as involuntary patients in a psychiatric establishment.

There are people who think beneficial to participate in research projects. Advanced directives should be promoted and people asked to claim if they wish to participate in research projects in the advance directives. If there is no advance consent research must not be carried out on involuntary patients.

11. The human rights of people suffering from mental disorder, especially those placed as involuntary patients.

Human rights are inherent and can't be ignored as they come from our human existence. Temporary withdrawal of liberties can be based upon court decisions only and should be regularly reviewed involving (ex-)user/survivor advocates/organisations (citizen participation as a human right) and independent expert and substitute decision makers (if any) or patients rights advocates.

12. The discrimination of people suffering from mental disorder.

Should be prevented by effective anti-discrimination policies developed through a meaningful involvement of (ex/)user/survivor organisations.

It should be unlawful to discriminate against a user, whether in employment, social security benefits, social and health provision etc. Furthermore, discrimination by stigmatisation in any media should also be unlawful.

The authorities should be obliged to take concrete measures to improve and maintain the quality of life of mental health service users. Specific funds should be set up, to be used for mental health promotion and anti-discrimination campaigns.

13. The termination of involuntary placement and treatment.

i., if the court decides so

ii., if there is no longer a reason for the involuntary placement/treatment

14. The review of the lawfulness of the involuntary placement and treatment.

Should be regular, court, independent expert, human rights committees (if any), local (ex-)user/survivor organisations, substitute decision makers (if any) and patients rights advocates should be involved.

15. The setting-up and monitoring of quality standards for the implementation of mental health legislation.

National and regional (ex-)user/survivor organisations should be involved in the process. Reports of the monitoring should be made public.

Concluding observations

As soon as the White Paper passes, it enforces an extensive right of treatment of the psychiatrists inside as well as outside psychiatry. Even after leaving a psychiatric institution after an acute stay,(ex-)users and survivors of psychiatry shall possibly be forced in freedom to do a prophylactic application of psychiatric drugs for life. Even in psychiatric quarters, ambulant coercive treatment is a controversial topic: So the plenary assembly of the World Federation for Mental Health accepted this resolution of the World Network of Users and Survivors of Psychiatry (WNUSP) in September 1999 in Santiago de Chile:

"Because of our concerns about the expansion of community based forced treatment we have resolved, that the WFMH will be supporting the resistance WNUSP against community based forced psychiatric treatments."

Even electroshocks shall be allowed against the will of the ›patient‹. All that is a scandalous offence against article no. 3 (physical and mental inviolability) as well as article no. 8 (private life) of the European Convention on Human Rights. In the case of refusal of the ›patient‹ not even an independent judicial decision shall be necessary in some countries, instead a permission of a social worker or manager of the institution shall be enough for the execution of the treatment.

If various other institutions have access to the treatment files, we have to speak of massive offence of data protection: We defeat the telephone tap only because of rules of the House because it offends against article no. 10 European Convention on Human Rights (freedom in getting and notifying of ideas and messages). A right on file inspection shall still be kept back of (ex-)users and survivors of psychiatry.

In all these bills we see obvious offences against all efforts for the abolition of unequal judicial treatment and for judicial equality with physically ill people.

Considering the due menace to our human rights, the positive aspects of this bill step decisively into the background and/or get a downright cynical character: While ›users‹ of psychiatry can completely lose the power of disposal over their own physical inviolability, they shall be fobbed off with the right to a beside table in a psychiatric institution. That lobotomy on children shall be forbidden is as commendable as the planned participation of (ex-)users and survivors of psychiatry in complaint commissions. Nevertheless no complaint commissions, independent of influence from psychiatric institutions and with a full-time team including lawyers is planned. So the planned complaint agencies at best have an alibi function and cannot be an effective control on power abuse and inadmissible treatment and commitment. Moreover it remains an open question, as to what one will be able to complain against – when this whole set of human rights offences, included in the White Paper come into force giving the power of nearly unrestricted arbitrary treatment is to psychiatrists.

We wonder about the nonchalance with which the resolutions made at the Health Ministers' conference in November 1999 in Brussels shall be offended. With these resolutions the bills formulated at the conference "Balancing Mental Health Promotion and Mental Health Care", a common meeting of the WHO (World Health Organization) and the European Commission in Brussels in April 1999 have been accepted. Counting here in particular: the "development of mental health legislation based on human rights, emphasising freedom of choice" (quoted of: World Health Organization / European Commission (1999): Balancing mental health promotion and mental health care: a joint World Health Organization / European Commission meeting. Brochure MNH/NAM/99.2. Brussels: World Health Organization, p. 9)

(Ex-)users and survivors of psychiatry want legal security, too. (Ex-)users and survivors of psychiatry follow the laws or offend against them just the same manner as everyone else. Human rights are not divisible. (Ex-)users and survivors of psychiatry must have the same rights as persons with physical illness.

The White Paper, as presented by the Working Party, should be withdrawn. With a view to working out a new proposal to the Committee of Ministers of the Council of Europe, a new working party should be appointed, the European Network of Users and Survivors of Psychiatry (ENUSP) and the member organisations of this network being richly represented.