Understanding psychiatric advance directives and how they work

1. Understanding psychiatric advance directives and how they work Jeffrey Swanson, PhD Department of Psychiatry & Behavioral Sciences Duke University School of Medicine 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

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

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.

4. Key features of PADs • Two legal types of PAD instruments; in many states can be used separately or together • 1. advance instructions • 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”

5. PADs are a variation on medical advance directives • but with key differences . . . • assume restoration of capacity • patients informed by treatment experience • 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.

6. Where did PADs come from? • Driving factors in the USA in the 1990s • Medical advance directives and federal law • 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. • Cruzan decision defined need for written documentation as evidence of incapacitated patients’ treatment preferences • 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

7. Where did PADs come from? • Driving factors in the USA in the 1990s • Mental health advocates adapted advance directives to the context of mental health crises. • Way for consumers to exert more control over own treatment. • Avoid involuntary treatment. • New emphases on recovery, patient-centered care, and shared decisionmaking in mental health services. • 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.

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

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

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

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

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

13. NC clinicians’ perceived barriers to implementation of PADs • Operational barriers • lack of communication between staff across service sectors; inpatient/outpatient discontinuity • lack of access to the document in a crisis • Perceived clinical barriers • inappropriate treatment requests/refusals • consumers’ desire to change their mind about treatment during crises • 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. Importance of having accurate knowledge of the law’s actual provisions regarding clinicians’ compliance with PADs • 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.

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 • Random assignment: • 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) • Structured interview assessments at baseline, 1 month, 6 months, 12 months, 24 months; record reviews

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

18. Consumers’ perceived barriers to completing PADs • Did not understand enough about PADs. • Difficult to find someone or somewhere to get help to complete 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 a doctor they trusted. • 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. Facilitated Psychiatric Advance Directive (F-PAD) Intervention • 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) • guided discussion of treatment choices • complete statutory forms • appoint proxy decisionmaker • obtain witnesses & notarization • file document in medical records (clinic, hospital) • register document with national and state electronic registries • PAD alert bracelet • Provide consultation about PAD to proxy and clinician

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

21. Key findings: PAD completion and document content (cont.) • 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. • Concordance with standard care • 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). • 58% specified nonadherence with medication or other treatment as a relapse factor. • 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). • 21% listed aggression/anger 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. • 77% refused some medication. • 76% gave reasons • 72% listed side effects for refused meds • No participant refused all medications and or treatment.

25. PAD content: Hospitals • 88% gave advance consent to hospitalization in at least one specified facility • 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.”

26. PAD content: Other Information • 52% wrote instructions to staff on ways to avoid or reduce reliance on restraints and seclusions. • 62% refused ECT under any circumstance. • 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). • 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: • 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)

29. Key findings: outpatient treatment engagement (cont.) • At 6 months follow-up, PAD completers had • Significantly greater improvement on treatment satisfaction scale (Mental Health Support Program—MHSP—scale) • 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.”

30. Key findings: outpatient treatment engagement (cont.) • At 6 months follow-up, PAD completers had • higher utilization of outpatient services • medication management visits (probability 41% vs. 33% 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.

31. Key findings: prevention of crises and coercion • 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) • Controlled (weighted) for propensity to complete PAD.

32. History of coercion in PAD study participants: Lifetime prevalence of coercive crisis interventions

33. Adjusted predicted probability1 of any coercive crisis interventions at follow-up for psychiatric advance directive (PAD) completers and noncompleters, by any episode of decisional incapacity within period Incapacity, no PAD Incapacity, with PAD No incapacity, no PAD No incapacity, with PAD Predicted Probability 6 months 12 months 24 months Follow-up wave 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 • 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

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. • 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.

36. www.nrc-pad.org

37. www.nrc-pad.org