1. Involuntary Treatment – Legal capacity, Article 12 CRPD and the paradoxes of beneficience. Jerome Bickenbach Swiss Paraplegic Research FUNDAMENTAL RIGHTS OF PERSONS WITH INTELLECTUAL DISABILITIES AND PERSONS WITH MENTAL HEALTH PROBLEMS Stakeholder meeting 4-5 November 2010 Vienna, Austria

2. Background A.People with temporary, permanent or episodic difficulties in cognitive or emotional functions of such severity as they [or others] percieve them to interfer with their decision-making capacity. (or communication problems) PEOPLE WITH MENTAL HEALTH PROBLEMS

3. Background B.Fundamental rights: Convention on the Rights of Persons with Disabilities Civil rights and human rights Personal right and social and economic rights… All apply to persons with mental disabilities, but because of fear, stigma and stereotyping, people with mental disabilities have to fight for the most basic and personal of rights… THE RIGHT TO BE A PERSON

4. CRPD – GENERAL PRINCIPLES THE ISSUE RESPECT

5. Background Caveat: Brutalizing, humiliating, cruel and lethal treatment obviously exists around the globe – these are massive injustices, but clear and obvious injustices and ones (We know this because brutalizing treatment are never justified as brutalizing but as essential, necessary, beneficial, in the patients best interest…) So, more legally challenging treatment scenarios are more useful for policy development and CRPD implementation

6. CRPD: Article 12, legal capacity and treatment decision-making How does the CRPD apply to respect for the person in treatment settings? How should CRPD be interpreted? How would this interpretation be applied in specific cases where autonomy and beneficience conflict? IS INVOLUNTARY TREATMENT PROHIBITED BY ARTICLE 12?

8. Article 12 - Equal recognition before the law: Rights 2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. 3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

9. IS INVOLUNTARY TREATMENT PROHIBITED BY ARTICLE 12? What we know already about Article 12… It has both a negative (protecting against abuse) and a positive (providing support for decision- making) focus. But does It anticipates in subsection 4, not just a) the need for decision-making support, but also b) the possibilities of (legitimate) constraints or limitations on the exercise of autonomy?

10. Scenarios of Involuntary treatment and involuntary non-treatment The refusal (to consent to) life sustaining treatment The refusal of prescribed treatment (directed at underlying disease) The refusal to prescribed treatment (directed at on professional outcomes, e.g. normal behaviour) The request to end life The request for treatment that is professionally judged not in ones interests (harmful, non-beneficial)

11. Implementation of Article 12 in real cases States parties obliged to put into place legal effective and enforceable mechanisms to… Protect LEGAL CAPACITY SUPPORT the exercise of legal capcity Provide SAFEGUARDS to any limitations to legal capacity

12. Does Article 12 require No treatment if no consent? Emergency, life-saving, unconsious....?

13. Does Article 12 require Respecting every decision about treatment? cf. Jehovah wittness child refusing blood transfusion

14. Does Article 12 require Rejection of 'ends justify means' justifications? What ends, what means?

15. Does Article 12 demand Non-prescriptive, non-judgmental support? Supporting, respecting … …but disagreeing and trying to persuade to change mind

16. What does Article 12 require? enjoy legal capacity on an equal basis with others...

17. Background C.Respect for the person covers all aspects of life, but treatment settings often are the most challenging (Treatment across sectors: medical, rehabilitation, social services…) D. Bioethical principles: Autonomy Beneficience Non-maleficience Justice …although all are at play in treatment settings with persons with mental disabilities, the most ethically and legally challenging scenarios occur when AUTONOMY and BENEFICIENCE CONFLICT

18. Article 12 - Equal recognition before the law: Safeguards Such safeguards shall ensure that measures 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, proportional and tailored to the persons 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 persons rights and interests.

19. How does the CRPD apply to respect for the person in treatment settings? How should CRPD be interpreted? Protecting the right of LEGAL CAPACITY – the right of a person with mental disabilities to be respected as an autonomous decision-making person. Providing such SUPPORT as is required to exercise legal capcity. Provide SAFEGUARDS to any limitations to legal capacity as may be imposed on autonomous decision-making: free of conflict of interest and undue influence, proportional and tailored to the persons circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body.

20. Legal and Moral perspectives Moral Human rights, respect, autonomy, personhood, equality… Legal (legal) Person, legal capacity, informed consent, competence…

21. When autonomy and beneficience conflict The refusal (to consent to) life sustaining treatment The refusal of prescribed treatment (directed at underlying disease) The refusal to prescribed treatment (directed at on professional outcomes, e.g. normal behaviour) The request to end life The request for treatment that is professionally judged not in ones interests (harmful, non-beneficial)