Further to the joint-letter which Mental Health Europe (MHE)1 submitted along with other concerned organisations, we would like to individually respond to the working document of the draft Additional Protocol to the Oviedo Convention on human rights and biomedicine2 (the draft Additional Protocol) and thank the Committee on Bioethics for affording us the opportunity to contribute. We regret, however, that we could not respond in a more detailed manner due to late notification relating to the public consultation.3 Unfortunately, despite some positive aspects reflected in the document, MHE is concerned that the Additional Protocol remains poorly timed and as a result could serve to undermine, rather than protect, the rights of persons with psychosocial disabilities in Europe as well as contribute to a fragmentation of human rights law. While groundbreaking at its inception, the Oviedo Convention itself is now out-of-step with the paradigm shift required by the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD); introducing a new Additional Protocol based on the Oviedo Convention therefore seems, to MHE and others, to be unwise. As noted repeatedly in several responses to last year’s questionnaire launched by the Council of Europe on the draft Additional Protocol, the UN CRPD requires a shift away from the medical approach to disability which unfortunately is not reflected in this draft. As drafted, the Additional Protocol appears to run contrary to the UN CRPD, in particular Articles 5 (discrimination), 12 (equal recognition before the law), 14 (liberty and security of the person), 15 (freedom from torture, inhumane and degrading treatment) and 25 (right to health).
Traditional mental health and guardianship laws in Europe have led to many human rights abuses against persons with psychosocial disabilities/mental health problems, a fact acknowledged by the Commissioner for Human Rights of the Council of Europe who recommended to Member States that, in light of the UN CRPD, they should ‘identify and remedy possible flaws and gaps depriving persons with disabilities of their human rights in relation to legislation concerning, inter alia, guardianship, voting rights and compulsory psychiatric care and treatment’.4 MHE is worried that the draft Additional Protocol will serve as a justification to continue with the status quo despite the fact that State Parties to the UN CRPD, which includes a majority of Member States of the Council of Europe as noted in the joint-letter, are required to implement a move away from treating persons with disabilities as objects rather than subjects of the law. In addition, the draft Additional Protocol appears to reinforce commonly held misconceptions about the perceived dangerousness of persons with mental health problems.5
The draft Additional Protocol also suffers from a false presumption that forced interventions are justified as they fulfill ‘therapeutic purposes’. There are increasing numbers of psychiatrists who would question the ‘therapeutic’ nature of such involuntary measures particularly as other alternative and consensual measures can be more effective and indeed more human rights compliant. In this regard, while MHE is happy to see the importance placed on alternative and least restrictive measures, the draft Additional Protocol largely supports business-as-usual, meaning that the decisions of persons with psychosocial disabilities can be overridden by one doctor on the basis of factors linked to their disability. The draft ignores the reality of the stigma experienced by persons with psychosocial disabilities both in legal and health care systems. Of course, one hopes that our judges and health professionals deal with persons under their care in a disability neutral way but the reality is very different and has arguably led to the system we have today where persons with psychosocial problems have been deemed incapable of making their own decisions predominately on the basis of their disability.
As the Committee on Bioethics will be aware, the Committee on the Rights of Persons with Disabilities (CRPD) recently issued Guidelines on Article 14 of the UN CRPD. 6 The Guidelines clarify that there should be an absolute prohibition of detention on the basis of impairment including for reasons related to perceived dangerousness of persons with psychosocial or intellectual disabilities as well as for alleged need of treatment as these reasons are tied to disability and therefore discriminatory and amount to an arbitrary deprivation of liberty. The Guidelines specifically referenced the intention of some regional bodies to adopt additional binding instruments which would allow for involuntary internment and forced treatment of persons with psychosocial disabilities. As a result, these Guidelines could be seen as a direct and negative response to the draft Additional Protocol.
The Guidelines go on to state that mental health services should be based on free and informed consent of the person concerned and refer to General Comment No.1 on Article 12 of the UN CRPD, published by the CRPD last April. General Comment No. 1 articulates an understanding of legal capacity which is not reflected in the current draft of the Additional Protocol as it still allows for substituted decision-making on the basis of a person’s psychosocial disability. There are positive aspects within the text which do reflect the need for supported decision-making including references to the need for support in order to allow people to exercise their autonomy as well as to ‘persons of trust’. However, taken as a whole the text largely supports the status quo for substituted decision-making and allows for ‘best interest’ type determinations to be made even though the UN CRPD requires States to do away with this approach and move towards a standard based on the ‘will and preferences of the person’. MHE is of the view that this standard is not adequately reflected in the current draft.7The Guidelines also include reference to access to justice and reparation and redress for persons with disabilities deprived of their liberty and quotes from the ‘United Nations Basic Principles and Guidelines on remedies and procedures on the right of anyone deprived of their liberty to bring proceedings before a court’, recently adopted by the Working Group on Arbitrary Detention. 8 These Basic Principles state that persons with disabilities should be provided with compensation for arbitrary or unlawful deprivations of their liberty. Regrettably, MHE notes that this key human rights issue is absent from the draft Additional Protocol.
Several UN Special Rapporteurs have also taken firm stances on forced placement and treatment on the basis of disability including the Special Rapporteurs on the right to health9, the rights of persons with disabilities and torture. The Special Rapporteur on the right to health has requested the Human Rights Committee to re-draft its General Comment on Article 9 of the UN International Covenant on Civil and Political Rights in order to bring it into line with the UN CRPD, stating that ‘mental health detention is never justified and must be abolished, and that laws permitting such detention, including laws that authorize institutional confinement or treatment based on the consent of a substitute decision-maker, must be repealed’.10 The Special Rapporteur on torture, in his report focusing on human rights abuses in healthcare systems, recommended that States should ‘impose an absolute ban on all forced and non-consensual medical interventions against persons with disabilities, including the non-consensual administration of psychosurgery, electroshock and mind-altering drugs such as neuroleptics, the use of restraint and solitary confinement, for both long- and shortterm application. The obligation to end forced psychiatric interventions based solely on grounds of disability is of immediate application.’11
These statements, along with those authoritative comments made by the CRPD, taken together would seem to raise serious concerns about whether a Protocol pertaining to the non-consensual placement and treatment of persons with disabilities could ever be seen to be human rights compliant if enforced for reasons linked to disability or impairment.
The paradigm shift required by the UN CRPD is still in its infancy and the jurisprudence of the CRPD is still evolving. However, the two recent authoritative pronouncements from the CRPD on Articles 12 and 14 appear to contradict the underlying ethos of the draft Additional Protocol. MHE remains of the view that given that this initiative intends to establish a completely different set of human rights standards which justify the denial of key human rights for persons with psychosocial disabilities, it is therefore, at its core, discriminatory. MHE is deeply concerned that, in its current form, the Protocol could solidify mental health laws which have resulted in the stigmatisation, mass detention and forced treatment of persons with psychosocial disabilities across Europe as well as create uncertainty for Member States who could face the unenviable task of trying to implement opposing regional and international human rights obligations. Furthermore, this draft comes at a crucial time when many Member States are in the process of reforming their mental health laws in order to transition to the social model of disability. In light of these concerns, MHE believes that the efforts of the Council of Europe would be better spent harmonising European human rights standards with the UN CRPD. We urge the Council of Europe and its Member States to withdraw the draft Additional Protocol in light of recent and ongoing developments relating to persons with psychosocial disabilities in the field of human rights. Lastly, the UN CRPD itself is revolutionary because persons with disabilities were represented in the room during negotiations and at every stage of the process, with a level of access to the treaty making process that remains unprecedented today. MHE recommends that should the Council of Europe remain determined to continue this process, the Committee on Bioethics should take a more participative approach to the drafting of this document.
As the title sets out that the Additional Protocol will specifically apply to persons with ‘mental disorder’, MHE is of the view that this runs contrary to the prohibition of discrimination outlined in Article 5 of the UN CRPD.
The Preamble recognizes the ‘potential vulnerability of persons with mental disorder’. However, the current model of disability sees persons with disabilities not as vulnerable due to their disability but as people put in vulnerable situations due to the way society views them and the lack of adequate support and services. This important distinction should be reflected in language relating to persons with any type of disability. The Preamble goes on to say that the existence of a mental disorder in itself shall in no case justify an involuntary measure however as this Protocol applies only to persons with psychosocial disabilities, having a psychosocial disability is a necessary precondition for applying this differential set of rules.
MHE is uncomfortable with the term ‘mental disorder’ which derives from the purely biomedical approach to disability and mental health care. Additionally, ‘mental disorders’ are defined in accordance with ‘internationally accepted medicals standards’. However, MHE, which includes among its members psychiatrists and mental health professionals, has been highlighting the problem with using documents like the DSM-V and the International Classification of Diseases which lack an evidence base and are not intended for use for such purposes.12 There was worldwide outcry from service users and professionals about DSM-V which was the culmination of increasing concern that the construction of categories of ‘mental disorder’ was running far ahead of scientific evidence. There have also been concerns raised in the international community that both these documents are influenced by the Pharmaceutical sector who benefit greatly from both forced placement and forced treatment.
Defining a non-consensual treatment for persons with psychosocial disabilities as an intervention with a therapeutic purpose is problematic. Many users of mental health services as well as mental health professionals would deny that being forced to undergo treatment is therapeutic. Article 25 of the UN CRPD on health is clear, healthcare should be administer on the basis of free and informed consent.
As mentioned above, the inclusion of reference to a ‘representative’ who may take decisions on behalf of a person with a psychosocial disability who does not have the capacity to consent runs contrary to their right to make free and informed decisions about their health, as outlined in Article 25 d), and read in conjunction with Article 12 of the UN CRPD on legal capacity.
MHE would question whether many of the bodies proscribed by law in Europe are competent to make medical decisions on behalf of an individual. We know that, for instance, the reliance on Courts to make decisions on behalf of persons with disabilities has in part led to the current situation of institutionalisation in many countries across Europe.
Persons with psychosocial disabilities may have difficulties understanding legal processes particularly niche laws such as mental health legislation. MHE believes that if a person is at risk of being deprived of
This Article is open to interpretation if ‘appropriate environment’ is left undefined. In many Member States mental health facilities and institutions go unmonitored and are implicitly believed to be ‘appropriate environments’ for persons with disabilities despite poor conditions. Without a definition of what an ‘appropriate environment’ would be, the Article is vague and offers little protection. As a result, this Article weakens the protection provided by the monitoring regime required by Article 20.
As stated above, given that these Articles only apply to persons with psychosocial disabilities, having a psychosocial disability is therefore a prerequisite for denying such persons of their rights and on this basis it is discriminatory. The CRPD Guidelines mentioned above are clear, depriving a person of their liberty on the basis of their impairment or reasons tied to their impairment including perceived dangerousness of persons with a psychosocial disability or alleged need of treatment would constitute an arbitrary deprivation of liberty.
MHE is concerned that this safeguard is not robust enough particularly as the assessment is based on just one doctors opinion. It also does not specify that this doctor should know the individual beforehand. Mental health problems are complex and personal in nature and if an assessment is made on the basis of diagnostic manuals by just one doctor who is unfamiliar with the patient, there is potential for misdiagnosis. In addition, MHE would question the ability of a doctor to judge what a person may or may not do on the basis of one medical examination.
As mentioned above the UN CRPD requires a standard where the wills and preference of a person are respected. Having to ‘take account’ of the opinion of a person, as well as any relevant previously expressed wishes, does not rise to the level of respecting that person’s ‘wills and preferences’.
This safeguard is again weakened by the fact that a second opinion is not sought and only the doctor in charge of a person’s care is responsible for assessing if the relevant criteria are no longer met. Persons with psychosocial disabilities often face stigma from health professionals even mental health professionals. It is the view of MHE, that mental health care should be based on an equal and consensual relationship of dialogue between the individual and the clinician and this Article would justify the traditional imbalance that has existed within this relationship by further empowering doctors to make decisions concerning the freedom of their patient.
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