negotiating autonomy: law, ethics, medicine and the role of psychiatric advance directives

1. Daniel L. Ambrosini, LLB/BCL, MSc, PhD Postdoctoral Research Fellow Harvard Law School, Program on the Legal Profession 6thJEMH Conference on Ethics in Mental Health Peterborough, Ontario November 29, 2012 negotiating autonomy: law, ethics, medicine and the role of psychiatric advance directives

2. Background • Growing demand for advance directives in Canadian mental health • Kirby Report (2004), Health Canada Glossary Project (2006); Mental Health Commission of Canada, Toward Recovery Report (2009); Canadian Hospice Palliative Care Association (2010) • Ethical debates (Ulysses contracts; self-binding problem; pre-commitment) • Legislative disparity across Canadian jurisdictions (i.e. type of document; duty to consult; duty to inquire; override principle; good faith clauses) • Common-law jurisprudence on autonomy and/or advance directives • Canada: Malette v. Shulman, [1990] O.J. No 450; Fleming v. Reid, [1991] O.J. No 1083; Starson v. Swayze, [2003] 1 S.C.R. 722. • US: Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990); Hargrave v. Vermont, F.3d 27 (2nd Circuit 2003).

3. More practically… Are individuals with certain types of mental disorders more or less likely to use different forms of advance directives, and how is this related to notions of autonomy, empowerment, and recovery? What types of instructions do individuals with mental illness include a PAD?

4. Advance Directives in Mental Health

5. HISTORICAL FACTORS IN THE DEVELOPMENT OF AUTONOMY IN MENTAL HEALTH

6. legislation across canada

7. Two Types of Advance Directives • Psychiatric advance directives (PADs) • Instructional directives: detailed information • PADs legislation enacted in over 30 US states • Specific to mental health issues • Mandates in case of incapacity • Proxy directives: appoint agent • Governed under Civil Code of Quebec (CCQ) • Predominantly for end-of-life and finances/property

8. preferences for instructional or proxy directives

9. Autonomy and Decision-Making

10. Civil Code of Quebec: Autonomy, Empowerment, Self-Determination • Autonomy (ability to self-legislate) • Decisions related to protective supervision shall respect one’s rights and safeguard autonomy (CCQ, 257) • When a court examines applications to institute protective supervision they should consider the degree of autonomy of the person (CCQ, 257) • Empowerment (ability to share information) • Mandate is a contract whereby the mandatorempowers a mandatary to represent him or her in the event of incapacity (CCQ, 2130) • Self-determination (ability to choose – yes/no) • The right of the Québec people to self-determination is founded in fact and in law. The Québec people is the holder of rights that are universally recognized under the principle of equal rights and self-determination of peoples (Act Respecting the exercise of the fundamental rights and prerogatives of the Quebec people and Quebec State, s. 1)

11. Mandates in Case of Incapacity (QC) • Example of mandate found on site of Curateur Public Québec • Section 4.1: Responsibility of Mandatary • “My mandatary is responsible for ensuring my moral and material welfare. In this sense, he is authorized to make any decisions and take any steps to meet my daily needs while respecting my wishes, my personal and religious values, my habits, my standard of living and degree of autonomy.” • Section 8: Partial Incapacity • Homologation: “I am fully aware that should I become partially incapable, some of the powers specified in this mandate could limit my rights and autonomy.” OR • Residual capacity: “I will retain full autonomy in decisions about my person.” OR • Prefer to refer it to the court

12. Powers of Attorney for Personal Care (Ontario) • POAs are also proxy directives • “a one-sided instrument, an instrument which expresses the meaning of the person who makes it” (Sweatman, 1993) • Substitute Decisions Act, s. 50 – allows for a Ulysses like arrangement • The grantor can include a provision in their POA authorizing attorney to use necessary and reasonable force to take a person to any place for care or treatment; • The grantor making the POA must then make a statement that he understands the effect of making such a provision; • A capacity assessor must assess individual’s capacity within 30 days after POA executed to ensure he understands it.

13. Capacity and Competence • Important to distinguish between capacity (medical) from competence (legal) • Challenges in assessing capacity (fluctuating; not global) • Quebec law recognizes partial capacity (CCQ, 258) • Was the decision made during a “cool moment”? • Is there a “cloud of suspicion” that the individual was not capable to complete the advance directive? • What happens to autonomy when an individual with mental illness becomes (partially) incapable?

14. The Self-binding Problem • Assume an individual is capable and decides to make an advance directive at Time 1 (T1) in the event he becomes incapable at Time 2 (T2). • If the advance directive is challenged at T2, how much weight should be given to the T1 preferences, which presumably were based on prior experiences? • Does the specific instruction reflect a “momentary interest” or a “fundamental value”? • Diachronic justification: respecting autonomy does not depend only on retrospective values but includes looking prospectively • Authenticity: need to assess the decision that is most congruent with a person’s life history

15. The Self-binding Problem • Simple commitment: promise or contract by one person to undertake an obligation to act in a certain way in the future • Pre-commitment: does not always involve a reciprocal undertaking by another individual (requires an inner resolution) • However, values and identities change over time that can lead to successive selves • Justifications to honour advance directives based on views of authenticity, identity, temporality, values...

16. research study aims • To examine the relationship between autonomy and PADs through the lens of evidence-based ethics. • To explore preferences for instructional (PADs) or proxy (mandates) directives in mental health. • To analyze advance directive legislation across Canadian provinces and territories. • To dovetail interdisciplinary aspects of PADs from a legal, ethical, and medical perspective.

17. hypotheses Quantitative • Individuals with higher levels of autonomy, empowerment, and recovery are more likely to choose instructional directives (PADs) over proxy directives (mandates). • Individuals with schizophrenia-spectrum disorder are more likely to choose instructional directives (PADs) than individuals with depression or bipolar disorder who are more likely to choose proxy directives (mandates). • The degree of autonomy, empowerment, and recovery of individuals who completed a PAD will increase more over a three-month period than among individuals who completed a mandate. Qualitative • Individuals’ values and experiences with mental illness, as communicated before and after completing a PAD, would be congruent with the instructions included and reasons for choosing an instructional directive.

18. methods

19. methods MEASURES & INSTRUMENTS *Measure administered at baseline and 3 months

20. embedded mixed methods design(design based on creswell & plano-Clark, 2003)

21. moment of choice PSYCHIATRIC ADVANCE DIRECTIVE • A psychiatric advance directive (PAD) is a legal document that allows you to protect your own personal interests if you become incapable by documenting your treatment preferences; • A PAD is an instructional directive (you declare your detailed instructions about the kinds of medical treatment you would like if you became incapable in the future); • A PAD informs your treatment providers who to contact if you become incapable; • You can appoint one or more persons to make decisions on your behalf if you become incapable; • You are able to include your detailed preferences regarding crisis symptoms, medication, hospital choices, and instructions to treatment providers who assist you when you are incapable; • You will sign the mandate along with two witnesses; • A PAD differs from a will, and can only be used while you are alive; • If you become capable after a period of incapacity, you can decide to change or terminate your mandate if you would like. MANDATE IN CASE OF INCAPACITY • A mandate is a legal document used in Québec to protect your personal interests if you become incapable by appointing someone else to make decisions on your behalf; • A mandate is a proxy directive (you appoint someone else to make decisions for you if you become ill and incapable to decide your choices); • A mandate informs your treatment providers who to contact if you become incapable; • You can appoint one or more persons to make decisions on your behalf if you become incapable; • You should have complete confidence in the person whom you choose to make your decisions for you; • You will sign the mandate along with two witnesses; • If you become incapable in the future, the mandate is given to a court who will approve the document; • A mandate differs from a will, and can only be used while you are alive; • If you become capable after a period of incapacity, you can decide to change or terminate your mandate if you would like.

22. data analyses quantitative qualitative Content analysis (ATLAS.ti) Enumerative approaches Transformation methods • Descriptive • Univariate and multivariate logistic regression • Modified extreme case analysis

23. results of hypothesis one • H1: Individuals with higher levels of autonomy, empowerment, and recovery are more likely to choose instructional directives (PADs) over proxy directives (mandates). • Result: Overall, 76% of individuals (n=41) chose PADs while 24% (n=13) chose mandates. • Result: Higher levels of autonomy, empowerment, recovery does not significantly predict choice of document (n.s.) • Result: Higher level of subjective negative perceptions towards medication predicted choice of PADs (OR= 1.3, 95% CI: 1.0-1.6).

24. results of hypothesis two • H2: Individuals with schizophrenia-spectrum disorder are more likely to choose instructional directives (PADs) than individuals with depression or bipolar disorder who are more likely to choose proxy directives (mandates). • Result: 100% of individuals with bipolar disorder, 75% of individuals with depression, and 53% of individuals with schizophrenia chose a PAD. • Result: Significant correlation between choice of document (PAD or mandate) and type of mental illness (bipolar disorder, depression, schizophrenia) (Fisher’s exact test, two sided, p < 0.01). • Result: Individuals with schizophrenia were not more likely to choose instructional directives versus proxy directives (n.s.). • Result: Many individuals asked to complete both documents (forced choice).

25. results of logistic regression

26. results of hypothesis three • H3: The degree of autonomy, empowerment, and recovery of individuals who completed a PAD will increase more over a three-month period than among individuals who completed a mandate. • Result: Individuals’ scores on autonomy, empowerment, and recovery remained stable from baseline to 3 months when the PAD and mandate group were combined (n.s.). • Result: When PAD and mandate group were separated, there was a small, yet significant, difference over 3 months on autonomy (API) (t= -2.7 (36), p = .01). • Result: Only two participants (n=59) asked to change a specific provision in their documents at 3 months.

27. results of hypothesis three

28. results of hypothesis four

29. 2 1 3

30. medication preferences in pads

31. advantages/disadvantages of pads

32. qualitative study

33. INTERVIEW GUIDE

34. results of emerging themes Trust Social Contact Family Isolation/reliance Doctor-patient relationship Spirituality Causal attribution Absence of relationships Recovery Autonomy Advance directives

35. results: advance directives “Well for instance...it will give me a sense of peace of mind that to know that if I get to the point that I can’t say anything there’s something in place that can represent myself.” - Individual with bipolar disorder “Someone has access to this to follow what was decided and also with the...psychiatrist that I’m seeing in the next building would have a copy of it...that’s comforting in respect that there is no unknowns…” - Individual with depression

36. results: negotiation “I would like to negotiate but…sometimes a person’s looks don’t correspond with their mental capacity.” - Female with depression “To negotiate with my doctor and my nurse and to talk and after we have reflection…But they talk to me first and we have a discussion.” - Female with schizophrenia

37. results: autonomy That’s one of my struggles at the moment. I’ve always been very autonomous, always taken care of things in spite of my alcoholism...So my autonomy is, I wouldn’t say it’s gone, but it’s not that I don’t feel the autonomyit’s just I have problems dealing with day to day responsibility at the moment…it’s nothing major that I have to do it’s just I just don’t feel like doing it anymore. As if everything I’ve done before I’ve given 110% and I just can’t give anymore. So that sort of, excuse the expression, screws up my autonomy because I’ve always been autonomous I’ve never really had any problems with that...except that I have problems dealing with responsibility or accepting or wanting to do things...autonomy is good, it’s always been good, at the moment it’s not as good as it was and I’m sure it’ll come back. - Individual with depression

38. results: trust & social networks Trust doctor Social networks “I don’t have very much support other than I totally trust the doctors.” - Female with depression “My best friend is me...it’s not others.” - Female with schizophrenia “I don’t have too many relationships that I can rely on...maybe one that I would trust my life with.” - Male with bipolar disorder • “He knows me for many years...its a very trustful relationship.” - Female with schizophrenia • “My trust is complete...I don’t have mistrust in the medical system.” - Male with depression • “They are the best doctors...I trust them with my life” - Female with bipolar disorder

39. trust & social network

40. study limitations • Sample size • Participant selection bias (phase II) • Hybrid nature of PAD • Interviewer bias

41. contribution to knowledge 1 2 3

42. future directions: interdisciplinary framework Definitions of autonomy, empowerment, dignity Devise toolkits Electronic registry Legislative reform Definitions of autonomy National prevalence rates Negotiation training

43. FUNDING SOURCES “In diseases of the mind, as well as in other ailments, it is an art of no little importance to administer medications properly but, it is an art of much greater and more difficult acquisition to know when to suspend or altogether omit them.” – Philippe Pinel, Treatise on Insanity (1806)