1. Psychiatric Advance Directives: Perspectives and Research Highlights 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 Jeff Swanson Marvin Swartz (with help from Richard Bonnie) Department of Psychiatry & Behavioral Sciences Duke University School of Medicine

3. Increasing interest in Psychiatric Advance Directives (PADs) in the US – new laws in 25 states since 1991 PENNSYLVANIA MONTANA NEW JERSEY NORTH CAROLINA OREGON OHIO OKLAHOMA SOUTH DAKOTA TEXAS UTAH WASHINGTON WYOMING NEW MEXICO ALASKA ARIZONA HAWAII IDAHO INDIANA ILLINOIS KENTUCKY LOUISIANA MAINE MARYLAND MICHIGAN MINNESOTA

4. 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? Would you want to complete a PAD if someone showed you how and helped you do it? and latent demand 3.90% – 12.87% said yes. 65.50% – 77.45% said yes. 100% 50% 25% 75% 0%

5. High latent demand for PADs but low completion rates Problem: Why don’t people complete PADs? (What are the barriers?) Problem: Why don’t people complete PADs? (What are the barriers?) Don’t know enough about PADs Don’t know enough about PADs No one to help with the mechanics of completing the document No one to help with the mechanics of completing the document Don’t trust anyone to appoint as proxy decisionmaker Don’t trust anyone to appoint as proxy decisionmaker Proposed solution: Facilitated Psychiatric Advance Directive Intervention Proposed solution: Facilitated Psychiatric Advance Directive Intervention 60-90 minute structured, manualized session with trained facilitator. 60-90 minute structured, manualized session with trained facilitator. Educate and assist consumer in completing legal Advance Instruction and/or Health Care Power of Attorney Educate and assist consumer in completing legal Advance Instruction and/or Health Care Power of Attorney

6. Research questions Does PAD facilitation work for people with serious mental illness? (Will they complete PADs?) Does PAD facilitation work for people with serious mental illness? (Will they complete PADs?) Assuming consumers do complete PADs, what do the documents contain? (Are PAD instructions feasible and consistent with clinical practice standards?) Assuming consumers do complete PADs, what do the documents contain? (Are PAD instructions feasible and consistent with clinical practice standards?) Do PADs work as intended? (And might they have other, indirect benefits?) Do PADs work as intended? (And might they have other, indirect benefits?) How do PADs interact with other leverages? How do PADs interact with other leverages?

7. Design of core study: Effectively Implementing PADs (R01 MH63949 and MacArthur Network funded) Enrolled sample of 469 patients with serious mental illness from 2 county outpatient mental health centers and 1 regional state psychiatric hospital in North Carolina Enrolled sample of 469 patients 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

8. Short-term outcomes Short-term outcomes PAD completion rate PAD completion rate 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 Reduce MH crises Reduce MH crises Reduce coercive crisis interventions and involuntary treatment Reduce coercive crisis interventions and involuntary treatment F-PAD study outcomes

9. Key findings: PAD completion and document content 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%.) PAD structure: 71% of PADs combined the instructional directive with health care power of attorney. PAD structure: 71% of PADs combined the instructional directive with health care power of attorney.

10. 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. 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. Concordance with standard care: PAD instructions were systematically rated by psychiatrists, and mostly found to be feasible and consistent with clinical practice standards.

11. 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 OR=1.67) Significantly greater positive change in working alliance with case managers and clinicians (adjusted OR=1.67) Significantly more likely to report receiving mental health services they felt they needed (adjusted OR=1.57) Significantly more likely to report receiving mental health services they felt they needed (adjusted OR=1.57)

12. 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 OR=1.71 for top quartile Adjusted OR=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.”

13. 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.

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

15. 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).

16. 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). Completing a Facilitated PAD reduced by about 50% the chance of any coercive crisis intervention over 24 months: Adjusted Odds Ratio = 0.50 (p<0.05)

17. 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

18. 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

19. 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. PADs may have their greatest impact for people under other forms of leveraged treatment. PADs may have their greatest impact for people under other forms of leveraged treatment.

20. How an instructional PAD can work “ I didn't ever want to receive ECT again. I had received it back in 2001 and it really messed me up… [This time, with a PAD] I did not receive any treatments that I did not want. They were very respectful….I really felt like the hospital took better care of me because I had my PAD. In fact, I think it's the best care that I've ever received.” “ I didn't ever want to receive ECT again. I had received it back in 2001 and it really messed me up… [This time, with a PAD] I did not receive any treatments that I did not want. They were very respectful….I really felt like the hospital took better care of me because I had my PAD. In fact, I think it's the best care that I've ever received.”

21. How an instructional PAD can work “The doctor didn't treat me like a nut case because some hospitals do. [He said] ‘You've got rights and it's great that you know you have them.’ He said to me, ‘Now you know your rights and we'll try to respect those completely’…And he did a lot for my health too.” “The doctor didn't treat me like a nut case because some hospitals do. [He said] ‘You've got rights and it's great that you know you have them.’ He said to me, ‘Now you know your rights and we'll try to respect those completely’…And he did a lot for my health too.”