1. Understanding psychiatric advance directives and how they work Acknowledgment: Support from the National Institute of Mental Health, the John D. and Catherine T. MacArthur Foundation, the Greenwall Foundation, and the National Resource Center on Psychiatric Advance Directives (NRC-PAD) www.nrc-pad.org Jeffrey Swanson, PhD Department of Psychiatry & Behavioral Sciences Duke University School of Medicine

2. Definitions and overview of psychiatric advance directives (PADs) in the USA Definitions and overview of psychiatric advance directives (PADs) in the USA Purpose Purpose Features Features Origins Origins Research on the effectiveness PADs Research on the effectiveness PADs Barriers to PADs and how to overcome them Barriers to PADs and how to overcome them PAD completion and use PAD completion and use Treatment engagement and satisfaction Treatment engagement and satisfaction Crisis prevention Crisis prevention Reduction of coercive interventions Reduction of coercive interventions Presentation Outline

3. What are psychiatric advance directives? Psychiatric advance directives (PADs) are legal instruments that allow competent persons to document their decisions and preferences regarding future mental health treatment and/or designate a surrogate decisionmaker in the event they lose capacity to make reliable treatment decisions during an acute episode of psychiatric illness. Psychiatric advance directives (PADs) are legal instruments that allow competent persons to document their decisions and preferences regarding future mental health treatment and/or designate a surrogate decisionmaker in the event they lose capacity to make reliable treatment decisions during an acute episode of psychiatric illness.

4. Key features of PADs Two legal types of PAD instruments; in many states can be used separately or together 1. advance instructions 1. advance instructions 2. proxy decisionmaker 2. proxy decisionmaker PADs are device for advance communication (“forecasting”) treatment decisions (consent/refusal) preferences and values to guide future decisions emergency information portable “psychiatric resume” Proscriptive and prescriptive functions Limited waiver of confidentiality Sometimes viewed as “self-commitment” or “Ulysses contract” Sometimes viewed as “self-commitment” or “Ulysses contract”

5. PADs are a variation on medical advance directives but with key differences... assume restoration of capacity assume restoration of capacity patients informed by treatment experience patients informed by treatment experience mental-health-specific issues (e.g., avoiding involuntary treatment) mental-health-specific issues (e.g., avoiding involuntary treatment) and in Virginia, PADs are folded into a comprehensive health care advance directive, combining medical and mental health directives. and in Virginia, PADs are folded into a comprehensive health care advance directive, combining medical and mental health directives.

6. Where did PADs come from? Driving factors in the USA in the 1990s Driving factors in the USA in the 1990s Medical advance directives and federal law Medical advance directives and federal law Supreme Court decision in 1990 Cruzan v. Director, Missouri Department of Health Supreme Court decision in 1990 Cruzan v. Director, Missouri Department of Health required “clear and convincing evidence” of a patient’s wishes in order to withdraw life-sustaining medical treatment. required “clear and convincing evidence” of a patient’s wishes in order to withdraw life-sustaining medical treatment. Cruzan decision defined need for written documentation as evidence of incapacitated patients’ treatment preferences Cruzan decision defined need for written documentation as evidence of incapacitated patients’ treatment preferences Patient Self-Determination Act 1991 Patient Self-Determination Act 1991 required hospitals receiving federal funds to ask patients if they had an advance directive on admission, and to have a policy for implementing advance directives required hospitals receiving federal funds to ask patients if they had an advance directive on admission, and to have a policy for implementing advance directives

7. Where did PADs come from? Driving factors in the USA in the 1990s Driving factors in the USA in the 1990s Mental health advocates adapted advance directives to the context of mental health crises. Mental health advocates adapted advance directives to the context of mental health crises. Way for consumers to exert more control over own treatment. Way for consumers to exert more control over own treatment. Avoid involuntary treatment. Avoid involuntary treatment. New emphases on recovery, patient-centered care, and shared decisionmaking in mental health services. New emphases on recovery, patient-centered care, and shared decisionmaking in mental health services. Family involvement in treatment decisionmaking. Family involvement in treatment decisionmaking. Political collaboration: Protection & Advocacy attorneys, state-level NAMI, and mental health consumer advocacy organizations came together to support PAD legislation in several states. Political collaboration: Protection & Advocacy attorneys, state-level NAMI, and mental health consumer advocacy organizations came together to support PAD legislation in several states.

8. Increasing interest in PADs in the US: new laws in 26 states since 1991 MONTANA NEW JERSEY NORTH CAROLINA OREGON OHIO OKLAHOMA SOUTH DAKOTA TEXAS UTAH VIRGINIA WASHINGTON WYOMING NEW MEXICO ALASKA ARIZONA HAWAII IDAHO INDIANA ILLINOIS KENTUCKY LOUISIANA MAINE MARYLAND MICHIGAN MINNESOTA PENNSYLVANIA

9. PAD prevalence… Chicago (n=205) Durham (n=204) San Francisco (n=200) Tampa (n=202) Worcester (n=200) 2004 MacArthur Network Survey of 1,011 psychiatric outpatients: Have you completed a mental health advance instruction or appointed a health care agent? 3.9% – 12.9% said yes. 100% 50% 25% 75% 0%

10. PAD prevalence… Chicago (n=205) Durham (n=204) San Francisco (n=200) Tampa (n=202) Worcester (n=200) Would you want to complete a PAD if someone showed you how and helped you do it? and latent demand 65.5% – 77.5% said yes. 100% 50% 25% 75% 0%

11. Research questions What are the barriers to PADs? What are the barriers to PADs? Barriers to completion and use Barriers to completion and use Different barriers perceived by consumers and clinicians Different barriers perceived by consumers and clinicians Does PAD facilitation work for people with serious mental illness? Does PAD facilitation work for people with serious mental illness? Address barriers and help them complete PADs? Address barriers and help them complete PADs? When consumers do complete PADs, what do these documents contain? When consumers do complete PADs, what do these documents contain? Are PAD instructions feasible and consistent with clinical practice standards? Are PAD instructions feasible and consistent with clinical practice standards? Do PADs work as intended? Do PADs work as intended? Might they have other, indirect benefits? Might they have other, indirect benefits?

12. What do clinicians think of PADs? Survey of 591 North Carolina mental health professionals Survey of 591 North Carolina mental health professionals psychiatrists psychiatrists psychologists psychologists social workers social workers Knowledge and attitudes regarding PADs and perceived barriers to implementing PADs Knowledge and attitudes regarding PADs and perceived barriers to implementing PADs

13. NC clinicians’ perceived barriers to implementation of PADs Operational barriers Operational barriers lack of communication between staff across service sectors; inpatient/outpatient discontinuity lack of communication between staff across service sectors; inpatient/outpatient discontinuity lack of access to the document in a crisis lack of access to the document in a crisis Perceived clinical barriers Perceived clinical barriers inappropriate treatment requests/refusals inappropriate treatment requests/refusals consumers’ desire to change their mind about treatment during crises consumers’ desire to change their mind about treatment during crises concerns with competency to complete document concerns with competency to complete document

14. Psychiatrists: Do you agree with North Carolina’s law regarding Advance Instructions (AI) for Mental Health Treatment and Health Care Power of Attorney (HCPA)?

15. Psychiatrists’ support for PADs increases significantly when they are aware that the law does not require them to follow advance instructions when those instructions deviate from accepted clinical standards of care. Psychiatrists’ support for PADs increases significantly when they are aware that the law does not require them to follow advance instructions when those instructions deviate from accepted clinical standards of care. Importance of having accurate knowledge of the law’s actual provisions regarding clinicians’ compliance with PADs

16. Design of core study: Effectively Implementing PADs (R01 MH63949 and MacArthur Network funded) Enrolled sample of 469 persons with serious mental illness from 2 county outpatient mental health centers and 1 regional state psychiatric hospital in North Carolina Enrolled sample of 469 persons with serious mental illness from 2 county outpatient mental health centers and 1 regional state psychiatric hospital in North Carolina Random assignment: Random assignment: 1. Experimental group: Facilitated Psychiatric Advance Directive (F-PAD) (n=239) 1. Experimental group: Facilitated Psychiatric Advance Directive (F-PAD) (n=239) 2. Control group: receive written information about PADs and referral to existing resources (n=230) 2. Control group: receive written information about PADs and referral to existing resources (n=230) Structured interview assessments at baseline, 1 month, 6 months, 12 months, 24 months; record reviews Structured interview assessments at baseline, 1 month, 6 months, 12 months, 24 months; record reviews

17. Short-term outcomes Short-term outcomes PAD completion rate; change in perceived barriers to completion PAD completion rate; change in perceived barriers to completion PAD document structure & content PAD document structure & content Intermediate outcomes Intermediate outcomes Outpatient treatment engagement Outpatient treatment engagement Working alliance with clinicians Working alliance with clinicians Long-range outcomes Long-range outcomes Frequency of mental health crises Frequency of mental health crises Reduction of coercive crisis interventions and involuntary treatment Reduction of coercive crisis interventions and involuntary treatment PAD study outcomes

18. Consumers’ perceived barriers to completing PADs Did not understand enough about PADs. Did not understand enough about PADs. Difficult to find someone or somewhere to get help to complete the PAD. Difficult to find someone or somewhere to get help to complete the PAD. Did not know what to write in the PAD. Did not know what to write in the PAD. Did not have anyone they trusted enough to make decisions for them. Did not have anyone they trusted enough to make decisions for them. Did not have a doctor they trusted. Did not have a doctor they trusted. Did not like to sign legal documents (or did not trust legal documents). Did not like to sign legal documents (or did not trust legal documents). 85% percent endorsed at least one barrier 55% reported 3 or more of the barriers

19. F-PAD designed as a structured but flexible session to provide orientation to PADs and direct assistance: F-PAD designed as a structured but flexible session to provide orientation to PADs and direct assistance: gather information or input from requested sources (e.g., clinician, family) gather information or input from requested sources (e.g., clinician, family) guided discussion of treatment choices guided discussion of treatment choices complete statutory forms complete statutory forms appoint proxy decisionmaker appoint proxy decisionmaker obtain witnesses & notarization obtain witnesses & notarization file document in medical records (clinic, hospital) file document in medical records (clinic, hospital) register document with national and state electronic registries register document with national and state electronic registries PAD alert bracelet PAD alert bracelet Provide consultation about PAD to proxy and clinician Provide consultation about PAD to proxy and clinician Facilitated Psychiatric Advance Directive (F-PAD) Intervention

20. Key findings: PAD completion and structure Completion: Intervention group participants significantly more likely to complete PADs: Completion: Intervention group participants significantly more likely to complete PADs: (61% vs. 3%.) (61% vs. 3%.) None 8% AI only 23% Completed both AI and HCPA 68% HCPA only 5%

21. Key findings: PAD completion and document content (cont.) Prescriptive vs. proscriptive function Prescriptive vs. proscriptive function Almost all PADs included treatment requests as well as refusals, but no participant used a PAD to refuse all medications and/or treatment. Almost all PADs included treatment requests as well as refusals, but no participant used a PAD to refuse all medications and/or treatment. Concordance with standard care Concordance with standard care PAD instructions were systematically rated by psychiatrists, and mostly found to be feasible and consistent with clinical practice standards. PAD instructions were systematically rated by psychiatrists, and mostly found to be feasible and consistent with clinical practice standards.

22. PAD content: Relapse Factors All subjects listed at least one risk factor for relapse (median=3). All subjects listed at least one risk factor for relapse (median=3). 58% specified nonadherence with medication or other treatment as a relapse factor. 58% specified nonadherence with medication or other treatment as a relapse factor. 20% described detailed behavioral patterns of decompensation. 20% described detailed behavioral patterns of decompensation.

23. PAD content: Crisis Symptoms 98% of subjects listed at least one crisis symptom they wanted to communicate to inpatient doctors (median=5). 98% of subjects listed at least one crisis symptom they wanted to communicate to inpatient doctors (median=5). 21% listed aggression/anger as crisis symptom 21% listed aggression/anger as crisis symptom 24% listed self-harm or suicidal ideation as crisis symptom 24% listed self-harm or suicidal ideation as crisis symptom

24. PAD content: Medications 94% gave advance consent to treatment with at least one psychotropic medication. 94% gave advance consent to treatment with at least one psychotropic medication. 77% refused some medication. 77% refused some medication. 76% gave reasons 76% gave reasons 72% listed side effects for refused meds 72% listed side effects for refused meds No participant refused all medications and or treatment. No participant refused all medications and or treatment.

25. PAD content: Hospitals 88% gave advance consent to hospitalization in at least one specified facility 88% gave advance consent to hospitalization in at least one specified facility However, 62% also documented advance refusals of admission to particular hospitals However, 62% also documented advance refusals of admission to particular hospitals 51% gave reasons, such as, “I do not wish to go back to that hospital, I was thrown in a dark room and am scared and was hurt by another patient last time.” 51% gave reasons, such as, “I do not wish to go back to that hospital, I was thrown in a dark room and am scared and was hurt by another patient last time.”

26. PAD content: Other Information 52% wrote instructions to staff on ways to avoid or reduce reliance on restraints and seclusions. 52% wrote instructions to staff on ways to avoid or reduce reliance on restraints and seclusions. 62% refused ECT under any circumstance. 62% refused ECT under any circumstance. 72% of the sample listed a history of side effects to particular medications. 72% of the sample listed a history of side effects to particular medications. 16% listed additional medical conditions they wanted providers to be aware of (e.g., diabetes, hypothyroidism, hypertension). 16% listed additional medical conditions they wanted providers to be aware of (e.g., diabetes, hypothyroidism, hypertension). 28% of subjects also documented medication and/or food allergies. 28% of subjects also documented medication and/or food allergies.

27. Do PADs work?

28. Key findings: outpatient treatment engagement At 1 month follow-up, F-PAD participants: At 1 month follow-up, F-PAD participants: Significantly greater positive change in working alliance with case managers and clinicians (adjusted odds ratio=1.67) Significantly greater positive change in working alliance with case managers and clinicians (adjusted odds ratio=1.67) Significantly more likely to report receiving mental health services they felt they needed (adjusted odds ratio=1.57) Significantly more likely to report receiving mental health services they felt they needed (adjusted odds ratio=1.57)

29. Key findings: outpatient treatment engagement (cont.) At 6 months follow-up, PAD completers had At 6 months follow-up, PAD completers had Significantly greater improvement on treatment satisfaction scale (Mental Health Support Program— MHSP—scale) Significantly greater improvement on treatment satisfaction scale (Mental Health Support Program— MHSP—scale) Adjusted odds ratio=1.71 for top quartile Adjusted odds ratio=1.71 for top quartile “As the result of services I received, I deal more effectively with daily problems…I am better able to control my life…I am getting along better with my family…I do better in school and/or work.” “As the result of services I received, I deal more effectively with daily problems…I am better able to control my life…I am getting along better with my family…I do better in school and/or work.”

30. Key findings: outpatient treatment engagement (cont.) At 6 months follow-up, PAD completers had At 6 months follow-up, PAD completers had higher utilization of outpatient services higher utilization of outpatient services medication management visits (probability 41% vs. 33% per month) medication management visits (probability 41% vs. 33% per month) outpatient crisis prevention visits (probability 19% vs. 10% per month) outpatient crisis prevention visits (probability 19% vs. 10% per month) At 12 months, PAD completers had significantly increased concordance between requested and prescribed meds. At 12 months, PAD completers had significantly increased concordance between requested and prescribed meds.

31. Key findings: prevention of crises and coercion By 6 months follow-up, PAD completers had fewer crisis episodes (adjusted odds ratio=0.46) By 6 months follow-up, PAD completers had fewer crisis episodes (adjusted odds ratio=0.46) At 24 months, PAD completers had reduced likelihood of coercive crisis interventions (adjusted odds ratio=0.50) At 24 months, PAD completers had reduced likelihood of coercive crisis interventions (adjusted odds ratio=0.50) Controlled (weighted) for propensity to complete PAD. Controlled (weighted) for propensity to complete PAD.

32. History of coercion in PAD study participants: Lifetime prevalence of coercive crisis interventions Type of interventionPercent Police transport to treatment67.78 Placed in handcuffs41.84 Involuntary commitment61.09 Seclusion on locked unit49.79 Physical restraints used37.66 Forced medications33.89 Any coercive crisis intervention82.43

33. Predicted Probability Incapacity, no PAD Incapacity, with PAD No incapacity, no PAD No incapacity, with PAD Follow-up wave 12 months24 months6 months Adjusted predicted probability 1 of any coercive crisis interventions at follow-up for psychiatric advance directive (PAD) completers and noncompleters, by any episode of decisional incapacity within period 1 Estimates produced from GEE regression Model 2 (see Table II).

34. Summary of key findings Large latent demand but low completion of psychiatric advance directives among public mental health consumers in the USA Large latent demand but low completion of psychiatric advance directives among public mental health consumers in the USA Structured facilitation (F-PAD) can overcome most of these barriers: Most consumers offered facilitation complete legal PADs. Structured facilitation (F-PAD) can overcome most of these barriers: Most consumers offered facilitation complete legal PADs. Completed facilitated PADs tend to contain useful information and are consistent with clinical practice standards Completed facilitated PADs tend to contain useful information and are consistent with clinical practice standards

35. Summary of key findings (cont.) Even though PADs are designed legally to determine treatment during incapacitating crises, they can have an indirect benefit of improving engagement in outpatient treatment process. Even though PADs are designed legally to determine treatment during incapacitating crises, they can have an indirect benefit of improving engagement in outpatient treatment process. PADs can help prevent crises as well as reduce the use of coercion when crises occur. PADs can help prevent crises as well as reduce the use of coercion when crises occur. Cooperation from clinicians and systematic implementation is needed in order for PADs to succeed. Cooperation from clinicians and systematic implementation is needed in order for PADs to succeed.

36. www.nrc-pad.org