Psychiatric Advance Directives:
Perspectives and Research Highlights
Jeff Swanson
Marvin Swartz
(with help from
Richard Bonnie)
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
Increasing interest in Psychiatric Advance Directives
(PADs) in the US –
new laws in 25 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
WASHINGTON
WYOMING
NEW MEXICO
PAD prevalence… and latent demand
100%
Would you want to complete a PAD if someone showed
you how and helped you do it?
65.50% – 77.45% said yes.
75%
50%
2004 MacArthur Network Survey of 1,011 psychiatric outpatients:
Have you completed a mental health advance instruction or
appointed a health care agent?
3.90% – 12.87% said yes.
25%
0%
Chicago
(n=205)
Durham
(n=204)
San Francisco
(n=200)
Tampa
(n=202)
Worcester
(n=200)
High latent demand for PADs but low completion rates

Problem: Why don’t people complete PADs? (What
are the barriers?)




Don’t know enough about PADs
No one to help with the mechanics of completing the document
Don’t trust anyone to appoint as proxy decisionmaker
Proposed solution: Facilitated Psychiatric Advance
Directive Intervention


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
Research questions




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?)
Do PADs work as intended? (And might
they have other, indirect benefits?)
How do PADs interact with other
leverages?
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
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
F-PAD study outcomes

Short-term outcomes



Intermediate outcomes



PAD completion rate
PAD document structure & content
Outpatient treatment engagement
Working alliance with clinicians
Long-range outcomes


Reduce MH crises
Reduce coercive crisis interventions and involuntary
treatment
Key findings: PAD completion and
document content

Completion: Intervention group participants
significantly more likely to complete PADs:


(61% vs. 3%.)
PAD structure: 71% of PADs combined the
instructional directive with health care power of
attorney.
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.
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 OR=1.67)
 Significantly more likely to report receiving
mental health services they felt they needed
(adjusted OR=1.57)

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 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.”
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.
Key findings: prevention of crises
and coercion



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)
Controlled (weighted) for propensity to complete PAD.
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
0.6
Predicted Probability
0.5
0.4
0.3
0.2
0.1
6 months
0
1
12 months
Follow-up wave
Estimates produced from GEE regression Model 2 (see Table II).
24 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
Incapacity, no PAD
Incapacity, with PAD
No incapacity, no PAD
No incapacity, with PAD
0.6
Predicted Probability
0.5
0.4
Completing a Facilitated PAD reduced by about 50% the
chance of any coercive crisis intervention over 24 months:
0.3
Adjusted Odds Ratio = 0.50 (p<0.05)
0.2
0.1
6 months
0
1
12 months
Follow-up wave
Estimates produced from GEE regression Model 2 (see Table II).
24 months
History of coercion in PAD study
participants: Lifetime prevalence of
coercive crisis interventions
Type of intervention
Police transport to treatment
Placed in handcuffs
Involuntary commitment
Seclusion on locked unit
Physical restraints used
Forced medications
Any coercive crisis intervention
Percent
67.78
41.84
61.09
49.79
37.66
33.89
82.43
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
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.
PADs may have their greatest impact for people
under other forms of leveraged treatment.
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.”
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.”