Person Centered Care Masterclass Deprivation of Liberty Patricia T Rickard-Clarke 23 January 2017
People with disabilities, both mental and physical, have the same human rights as the rest of the human race The whole point about human rights is their universal character Lady Hale (P [2014] UKSC)
Overview Definitions Domestic and international human rights obligations Deprivation of Liberty Physical restraint Chemical restraint Environmental (Detention) Proposed Legislative Provision
Definition A restrictive procedure is a practice that: Limits an individual s movement, activity or function Interferes with an individual s ability to acquire positive reinforcement Results in the loss of objects or activities that an individual values or Requires an individual to engage in a behaviour that the individual would not engage in given freedom of choice (HIQA Guide to Designated Centres: Restraint Procedures 2016)
Restrictive Procedures include - Physical or Mechanical restraint, in which a person or a mechanical device restricts a person s freedom of movement or access to their own body Chemical restraint, is the use of medication to control or modify a person s behaviour when no medically identified condition is being treated, or where the treatment is not necessary for the condition or the intended effect of the drug is to sedate the person for convenience or disciplinary purposes. Environmental restraint, is the intentional restriction of a person s normal access to their environment, with the intention of stopping them from leaving. Includes denying a person their normal means of independent mobility, means of communicating, or the intentional taking away of ability to exercise civil and religious liberties.
Constitution of Ireland All citizens shall, as human persons, be held equal before the law (Article 40.1) The State guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate the personal rights of the citizen (includes right to bodily integrity and right to privacy) No citizen shall be deprived of his personal liberty save in accordance with law (Article 40.4.1)
European Convention on Human Rights Article 3 No one shall be subject to torture or to inhuman or degrading treatment or punishment Absolute right Negative obligation the State must itself refrain from subjecting anyone within its jurisdiction to treatment or punishment that meets the threshold of being torture, inhumane for degrading treatment Positive obligation this requires the State to have laws in place to adequately protect vulnerable group from ill-treatment Procedural obligation to have procedural procedures in place to enable effective investigation to be carried out in a prompt and independent manner leading to sanctions for any violation
European Convention on Human Rights Article 5 Everyone has the right to liberty and security of person. No one shall be deprived of his liberty save in accordance with a procedure prescribed by law exceptions (Article 5.1) Crime, infectious disease, persons of unsound mind Everyone who is deprived of his liberty by arrest or detention shall be entitled to take proceedings by which the lawfulness of his detention shall be decided speedily by a court (Article 5.4) Everyone who has been the victim of arrest or detention in contravention of the provisions of this Article shall have an enforceable right to compensation (Article 5.5)
European Convention on Human Rights Deprivation of Liberty (Council of Europe Guide on Art 5 [2014]) Article 5 contemplates the physical liberty of the person and ensures that no one is deprived of that liberty in an arbitrary fashion Deprivation of liberty is one of degree of intensity and not related to the nature or substance Deprivation of liberty is not confined to the classic case of detention following arrest or conviction, but may take numerous other forms ( i.e. the placement in social care institutions). (P,PQ living arrangements for a person who lacks decision making capacity) The right of liberty is too important in a democratic society for a person to lose the benefit of Convention protection.especially when that person is legally incapable of consenting to, or disagreeing with the proposed action. The fact that a person lack capacity does not necessarily mean that he/she is unable to understand and consent to proposed action
European Convention on Human Rights Article 8 Everyone has the right to respect for his private and family life Article 17- Prohibition of abuse of rights Nothing in this Convention may be interpreted as implying for any State, group or person any right to engage in any activity or perform any act aimed at the destruction of any of the rights and freedoms set forth herein or at their limitation to a greater extent than is provided in the Convention Article 18 Limitation on use of restrictions on rights The restrictions permitted under this Convention to the said rights and freedoms shall not be applied for any purpose other than those for which they have been prescribed
Unsound Mind Not defined in ECHR Case law (Stanev v Bulgaria, Shtukaturov v Russia, Winterwerp v the Netherlands, DD v Lithunania) 3 minimum conditions must be satisfied The individual must be reliably shown, by objective medical expertise, to be of unsound mind, unless emergency detention is required The individual s mental disorder must be of a kind to warrant compulsory confinement. Deprivation of liberty must be show to have been necessary in the circumstances The mental disorder, verified by objective medial evidence, must persist throughout the period of detention
European Convention on Human Rights Act 2003 ECHR incorporated into Irish law Irish Courts must now interpret Irish law in a way which gives effect to the State s obligations under the ECHR regardless of whether legislation pre or post 2003 Every organ of the State must perform its functions in a manner compatible with the State s obligations under the ECHR Judicial Notice must be taken of: Any declaration, decision, advisory opinion or judgment of the European Court of Human Rights Any decision or opinion of the European Commission of Human Rights Any decision of the Committee of Minister of the Council of Europe
UN International Covenant on Civil and Political Rights 1966 Article 9 Everyone has the right to liberty and security of person. No one shall be subjected to arbitrary arrest or detention. No one shall be deprived of his liberty except on such grounds and in accordance with such procedure as are established by law (9.1) Anyone who is deprived of his liberty by arrest or detention shall be entitled to take proceedings before a court, in order that that court may decide without delay on the lawfulness of his detention and order his release if the detention is not lawful (9.4) Anyone who has been the victim of unlawful arrest or detention shall have an enforceable right to compensation (9.5)
ICCPR: Human Rights Committee (Dec 2014) State parties should revise outdated laws and practices The existence of a disability shall not in itself justify a deprivation of liberty but rather any deprivation of liberty must be necessary and proportionate, for the purpose of protecting the individual in question from serious harm or preventing injury to others It must be applied only as a measure of last resort and for the shortest appropriate period of time, and must be accompanied by adequate procedural and substantive safeguards established by law The procedures should ensure respect for the views of the individual and ensure that any representative genuinely represents and defends the wishes and interests of the individual
UN Declaration on Bioethics and Human Rights 2005 To promote respect for human dignity and protect human rights, by ensuring respect for the life of human beings, and fundamental freedoms, consistent with international human rights law..the interest and welfare of the individual shall have priority over the sole interest of science or society (Arts 2 + 3) The autonomy of persons to make decisions is to be respected. For persons who are not capable of exercising autonomy, special measures are to be taken to protect their rights and interests (Art 5) Any preventative, diagnostic and therapeutic medical intervention is only to be carried out with the prior, free and informed consent of the person concerned, based on adequate information. The consent should, where appropriate be express and may be withdrawn by the person concerned at any time and or any reason with disadvantage or prejudice (Art 6)
UN Convention on the Rights of Persons with Disabilities 2006 (Art 12.1.2 + 3) State Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law State Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life State Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity
UN Convention on the Rights of Persons with Disabilities 2006 (Art 12.4) State Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measure relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person s rights and interests.
UN Convention on Rights of Persons with Disabilities (Deprivation of Liberty) (Art 14) State Parties shall ensure that persons with disabilities on and equal basis with others (a) Enjoy the right to liberty and security of person (b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty, is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty State Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of the Convention, including by provision of reasonable accommodation
UN Committee on Article 14 (September 2015) Committee reaffirms that liberty + security of person is one of the most precious rights to which everyone is entitled Art 14 is in essence a non-discrimination provision, it specifies the scope of the right prohibiting all discrimination based on disability in its exercise. Thereby, Art 14 relates directly to the purpose of the Convention - the full and equal enjoyment of all human rights. States parties should refrain from the practice of denying legal capacity of persons with disabilities and detaining them in institutions against their will, either without the free and informed consent of the persons concerned or with the consent of a substitute decision-maker, as this practice constitutes arbitrary deprivation of liberty and violates articles 12 (equal recognition before the law) and 14 of the Convention.
Deprivation of Liberty Principles European Court of Human Rights ECHR set down general principles: Important not to confuse the question of the benevolent justification for the care arrangements with the concept of deprivation of liberty Human rights have a universal character and physical liberty is the same for everyone, regardless of their disabilities What would be a deprivation of liberty for a non-disabled person is also a deprivation for a disabled person The key feature is whether the person concerned is under continuous supervision and control and is not free to leave The person's compliance or lack of objection, the relative normality of the placement and the purpose behind it are all irrelevant to this objective question
Ireland: Current Policies Mental Health: Code of Practice on the Use of Physical Restraint in Approved Centres (MHC) Rules Governing the Use of Seclusion and Mechanical means of Bodily Restraint (MHC) Other: Policy on the Use of Physical Restraints in Residential Care Units for Older People (HSE 2010) Currently under review Towards a Restraint Free Environment in Nursing Homes (DofH 2011) Restrictive procedures in designated centres for persons with disabilities: What constitutes a notifiable event? (HIQA 2014) Guidance for Designated Centres: Restraint Procedures (HIQA 2014/6) Guide to Professional Conduct and Ethics for Registered Medical Practitioners (Medical Council 2016)
Regulations Health Act 2007 (Care and Support of Residents in Designated Centres for Persons (Children and Adults) with Disabilities) Regulations 2013 A Written report is required in relation to any occasion on which a restrictive procedure including physical, chemical or environmental restraint was used (Reg 31(3)) The registered provider shall ensure that, where restrictive procedures including physical, chemical or environmental restraint are uses, such procedures are applied in accordance with national policy and evidence based practice. (Reg 7(4))
Procedure prescribed by law (ECHR) In conformity with law (UNCRPD) MHAct gives authority to clinician to decide to detain Person detained is entitled to legal representation Is entitled to be given description of proposed treatment Is entitled to have detention reviewed by Mental Health Tribunal Can appeal decision of the Tribunal to the Circuit Court Person is detained in an approved centre Person may be admitted as a voluntary patient if indicates a wish to be so admitted
Mental Health Act 2001 Predates European Convention on Human Rights Act 2003 All legislation both pre and post 2013 must be interpreted to comply with ECHR UN Convention on the Rights of People with Disabilities 2006 The developed jurisprudence of European Court of Human Rights on DOL issues Mental Health Act does not address the issue of persons who come within its provisions but who lack decision-making capacity Assisted Decision-Making (Capacity) Act 2015 provides legislative framework for those who lack decision-making capacity The rights of patients who are voluntary patients are often ignored
Recommendations of Expert Group Mental Health (Amendment) Bill 2017?? Reference to significant intellectual disability and severe dementia in MHAct to be removed to comply with UNCRPD The Review states that issue of deprivation of liberty must be set in the context of the principles set out in the capacity legislation This recommendation therefore concludes that where a person is being detained and if all treatment is refused by a person with capacity then the person should be discharged
Gaps in current Irish legislation Do not address deprivation of liberty/restraint and formal legal process required by ECHR or UNCRPD (for those who lack capacity) In a limited manner in relation to attorneys and decisionmaking representatives No legislation on the use of chemical restraint Policies and Regulations Philosophy and culture do not reflect requirements of human rights obligations People living in nursing homes/residential centres are still subject to unnecessary restrictive procedures Consent is not obtained Legislation must address these issues: Ireland due to ratify UNCRPD must be Convention compliant
Capacity and Consent A person who has capacity is in a position to refuse any form of medical treatment any form of invasion of his/her body (chemical restraint) any form of physical for mechanical restraint to his or her movement or mobility Any form of environmental restraint (right to decide where to reside) What safeguards are in place to ensure the consent of the person is obtained for a person whose capacity is in question or who lacks decision-making capacity? Doctrine of Necessity cannot be used
Environmental Restraint Place of Residence/Deprivation of Liberty Issues Consent of person is required for admission to a nursing home/designated centre A person who lacks capacity enjoys the same right to physical liberty and security of person as everyone else and this can only be curtailed with proper safeguards the right to privacy and family life Right to decide on residence must be respected Respite Care tell the truth
Context for legislation Must be in the context of ADMC Act 2015 How capacity is to be construed functional approach Guiding principles must apply Mechanisms for the support/assistance to make decisions Pre Planning Advance Healthcare Directives + Enduring Powers of Attorney Contemporaneous Decision-Making Assistant, Co-Decision- Maker and Decision Making Representative Oversight of Decision Support Service Court Jurisdiction Independent Advocate
Disability (Miscellaneous Provisions) Bill General Scheme of the Equality/Disability (Miscellaneous Provisions) Bill (17 August 2016) Head 3 Deprivation of liberty [To provide legislative clarity with regard to who has statutory responsibility for a decision that a patient in a nursing home or similar residential care facility should not leave for health and safety reasons. Provide for an appeals process.] Disability (Miscellaneous Provisions) Bill (21 Dec 2016) Second Stage 7/8 February 2017 Committee Stage Deprivation of Liberty
Deprivation of Liberty Part 13 of ADMC Act?? Every person to have the right to: Consent to or refuse admission to designated centre Consent to/refuse supervision and control while there Leave at any time If person has capacity can decide If person lacks capacity - procedure prescribed by law if intervention necessary. Person must be given information on the: reason for the intervention nature of the intervention effect of the intervention
What procedures should the legislation provide for? Admission is necessary to provide care needs to the relevant person Assessment of care needs Review is it necessary and proportionate Emergency process where urgent intervention is necessary Access to an independent advocate Right of appeal to the court/process of appeal
Medication HIQA (Health Information and Regulator Authority) Regulator Administering sedatives to a person who wanders during the night primarily for the convenience of staff is an example of chemical restraint not acceptable Aras Attracta Use of psychotropic medication to manage behaviour without knowledge as to why the medication was prescribed Staff member responsible unable to confirm whether or not the resident had a psychiatric diagnosis, Two staff present all the time around a resident restrictive practice no evidence of this restriction being given a due process consideration, independently reviewed or time-limited Older People Evidence of large use of antipsychotic medication
Chemical Restraint (1) Art 3 ECHR Chemical restraint, is the intentional use of medication to control or modify a person s behaviour or to ensure a patient is compliant or not capable of resistance, when no medically identified condition is being treated, or where the treatment is not necessary for the condition or the intended effect of the drug is to sedate the person for convenience or disciplinary purposes. Chemical restraint is inhuman and degrading treatment Issue: Is it Medical Treatment or Chemical Restraint? The appropriate use of drugs to reduce symptoms in the treatment of medical conditions such as anxiety, depression, or psychosis, does not constitute restraint
Chemical Restraint (2) Informed Consent required for medication Inappropriate use of antipsychotic drugs Can harm person (gait disturbance, memory impairment, sedation, withdrawal, movement disorder, functional decline, increased fall risk) Increased risk of adverse side effects in older people Disturbed behaviour in older people may indicate Physical discomfort, medical illness, sensory impairment or presence of unmet needs that cannot be easily communicated Understanding behaviour and triggers for behaviour Personalised and comprehensive assessment necessary Behaviour should be described rather than labelled Very clear documentation for prescribing/reasons why Skilled staff/training required
Legislative Provision: Hopefully! Chemical restraint which is the use of medication to control or modify a person s behaviour when no medically identified condition is being treated, or where the treatment is not necessary for the condition or the intended effect of the medication is to sedate the person for convenience or disciplinary purposes shall never be used.
Legislation Physical Restraint Guiding Principles in ADMC Act to include consent and policy documents Environmental Restraint specific legislation Chemical Restraint specific legislation
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