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 SwansonMarvin Swartz(with help from Richard Bonnie)

Department of Psychiatry &

Behavioral SciencesDuke University

School of Medicine

Increasing interest in Psychiatric Increasing interest in Psychiatric Advance Directives (PADs) in the US – Advance Directives (PADs) in the US –

new laws in 25 states since 1991new 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

PAD PAD prevalence…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 and latent demanddemand

3.90% – 12.87% said yes.

65.50% – 77.45% said yes.

100%

50%

25%

75%

0%

High latent demand for PADs but low High latent demand for PADs but low completion ratescompletion rates

Problem: Why don’t people complete PADs? Problem: Why don’t people complete PADs? (What are the barriers?)(What are the barriers?) Don’t know enough about PADsDon’t know enough about PADs No one to help with the mechanics of completing the No one to help with the mechanics of completing the

documentdocument Don’t trust anyone to appoint as proxy decisionmakerDon’t trust anyone to appoint as proxy decisionmaker

Proposed solution: Facilitated Psychiatric Proposed solution: Facilitated Psychiatric Advance Directive InterventionAdvance Directive Intervention 60-90 minute structured, manualized session with 60-90 minute structured, manualized session with

trained facilitator.trained facilitator. Educate and assist consumer in completing legal Educate and assist consumer in completing legal

Advance Instruction and/or Health Care Power of Advance Instruction and/or Health Care Power of AttorneyAttorney

Research questionsResearch questions Does PAD facilitation work for Does PAD facilitation work for

people with serious mental illness? people with serious mental illness? (Will they complete PADs?)(Will they complete PADs?)

Assuming consumers do complete Assuming consumers do complete PADs, what do the documents PADs, what do the documents contain? (Are PAD instructions contain? (Are PAD instructions feasible and consistent with feasible and consistent with clinical practice standards?)clinical practice standards?)

Do PADs work as intended? (And Do PADs work as intended? (And might they have other, indirect might they have other, indirect benefits?)benefits?)

How do PADs interact with other How do PADs interact with other leverages?leverages?

Design of core study: Effectively Design of core study: Effectively Implementing PADs (R01 MH63949 and Implementing PADs (R01 MH63949 and

MacArthur Network funded)MacArthur Network funded) Enrolled sample of 469 patients with serious mental Enrolled sample of 469 patients with serious mental

illness from 2 county outpatient mental health illness from 2 county outpatient mental health centers and 1 regional state psychiatric hospital in centers and 1 regional state psychiatric hospital in North CarolinaNorth Carolina

Random assignment:Random assignment: 1. Experimental group: Facilitated Psychiatric Advance 1. Experimental group: Facilitated Psychiatric Advance

Directive (F-PAD) (n=239)Directive (F-PAD) (n=239) 2. Control group: receive written information about PADs 2. Control group: receive written information about PADs

and referral to existing resources (n=230)and referral to existing resources (n=230) Structured interview assessments at baseline, 1 Structured interview assessments at baseline, 1

month, 6 months, 12 months, 24 months; record month, 6 months, 12 months, 24 months; record reviewsreviews

Short-term outcomesShort-term outcomes PAD completion ratePAD completion rate PAD document structure & contentPAD document structure & content

Intermediate outcomesIntermediate outcomes Outpatient treatment engagementOutpatient treatment engagement Working alliance with cliniciansWorking alliance with clinicians

Long-range outcomesLong-range outcomes Reduce MH crisesReduce MH crises Reduce coercive crisis interventions and Reduce coercive crisis interventions and

involuntary treatment involuntary treatment

F-PAD study outcomesF-PAD study outcomes

Key findings: Key findings: PAD PAD completion and document completion and document

contentcontent Completion: Intervention group Completion: Intervention group

participants significantly more likely to participants significantly more likely to complete PADs: complete PADs: (61% vs. 3%.) (61% vs. 3%.)

PAD structure: 71% of PADs combined PAD structure: 71% of PADs combined the instructional directive with health the instructional directive with health care power of attorney.care power of attorney.

Key findings: Key findings: PAD PAD completion and document completion and document

content (cont.)content (cont.) Prescriptive vs. proscriptive function: Almost Prescriptive vs. proscriptive function: Almost

all PADs included treatment requests as well all PADs included treatment requests as well as refusals, but no participant used a PAD to as refusals, but no participant used a PAD to refuse all medications and/or treatment. refuse all medications and/or treatment.

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

Key findings: Key findings: outpatient outpatient treatment engagementtreatment engagement

At 1 month follow-up, F-PAD At 1 month follow-up, F-PAD participants:participants: Significantly greater positive change in Significantly greater positive change in

working alliance with case managers working alliance with case managers and clinicians (adjusted OR=1.67)and clinicians (adjusted OR=1.67)

Significantly more likely to report Significantly more likely to report receiving mental health services they receiving mental health services they felt they needed (adjusted OR=1.57)felt they needed (adjusted OR=1.57)

Key findings: Key findings: outpatient outpatient treatment engagement treatment engagement

(cont.)(cont.) At 6 months follow-up, PAD completers hadAt 6 months follow-up, PAD completers had

Significantly greater improvement on treatment Significantly greater improvement on treatment satisfaction scale (Mental Health Support Programsatisfaction scale (Mental Health Support Program—MHSP—scale)—MHSP—scale) Adjusted OR=1.71 for top quartileAdjusted OR=1.71 for top quartile ““As the result of services I received, I deal more As the result of services I received, I deal more

effectively with daily problems…I am better able effectively with daily problems…I am better able to control my life…I am getting along better with to control my life…I am getting along better with my family…I do better in school and/or work.” my family…I do better in school and/or work.”

Key findings: Key findings: outpatient outpatient treatment engagement treatment engagement

(cont.)(cont.) At 6 months follow-up, PAD completers hadAt 6 months follow-up, PAD completers had

higher utilization of outpatient services higher utilization of outpatient services medication management visits (probability medication management visits (probability

41% vs. 33% per month)41% vs. 33% per month) outpatient crisis outpatient crisis preventionprevention visits (probability visits (probability

19% vs. 10% per month) 19% vs. 10% per month) At 12 months, PAD completers had significantly At 12 months, PAD completers had significantly

increased concordance between requested and increased concordance between requested and prescribed meds.prescribed meds.

Key findings: Key findings: prevention of prevention of crises and coercioncrises and coercion

By 6 months follow-up, PAD completers had By 6 months follow-up, PAD completers had fewer crisis episodes (adjusted OR=0.46)fewer crisis episodes (adjusted OR=0.46)

At 24 months, PAD completers had reduced At 24 months, PAD completers had reduced likelihood of coercive crisis interventions likelihood of coercive crisis interventions (adjusted OR=0.50)(adjusted OR=0.50)

Controlled (weighted) for propensity to Controlled (weighted) for propensity to complete PAD.complete PAD.

Pred

icte

d Pr

obab

ility

0

0.1

0.2

0.3

0.4

0.5

0.6Incapacity, no PAD Incapacity, with PADNo incapacity, no PADNo incapacity, with PAD

Follow-up wave

12 months 24 months

6 months

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

1 Estimates produced from GEE regression Model 2 (see Table II).

Pred

icte

d Pr

obab

ility

0

0.1

0.2

0.3

0.4

0.5

0.6Incapacity, no PAD Incapacity, with PADNo incapacity, no PADNo incapacity, with PAD

Follow-up wave

12 months 24 months

6 months

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

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)

History of coercion in PAD study participants: Lifetime prevalence

of coercive crisis interventions

Type of intervention PercentPolice transport to treatment 67.78Placed in handcuffs 41.84Involuntary commitment 61.09Seclusion on locked unit 49.79Physical restraints used 37.66Forced medications 33.89Any coercive crisis

intervention 82.43

Summary of key findingsSummary of key findings Large latent demand but low completion of Large latent demand but low completion of

psychiatric advance directives among psychiatric advance directives among public mental health consumers in the USApublic mental health consumers in the USA

Structured facilitation (F-PAD) can Structured facilitation (F-PAD) can overcome most of these barriers: Most overcome most of these barriers: Most consumers offered facilitation complete consumers offered facilitation complete legal PADs. legal PADs.

Completed facilitated PADs tend to contain Completed facilitated PADs tend to contain useful information and are consistent with useful information and are consistent with clinical practice standards clinical practice standards

Summary of key findings Summary of key findings (cont.)(cont.)

Even though PADs are designed legally to Even though PADs are designed legally to determine treatment during incapacitating determine treatment during incapacitating crises, they can have an indirect benefit of crises, they can have an indirect benefit of improving engagement in outpatient improving engagement in outpatient treatment process.treatment process.

PADs can help prevent crises as well as PADs can help prevent crises as well as reduce the use of coercion when crises occur.reduce the use of coercion when crises occur.

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

How an instructional PAD How an instructional PAD can workcan work

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

How an instructional PAD How an instructional PAD can workcan work

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