Transcript Ever Arrested (% Yes)

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
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
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.
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”
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.
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
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.
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
PAD prevalence…
100%
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?
3.9% – 12.9% said yes.
25%
0%
Chicago
(n=205)
Durham
(n=204)
San Francisco
(n=200)
Tampa
(n=202)
Worcester
(n=200)
PAD prevalence… and latent demand
100%
Would you want to complete a PAD if someone showed
you how and helped you do it?
65.5% – 77.5% said yes.
75%
50%
25%
0%
Chicago
(n=205)
Durham
(n=204)
San Francisco
(n=200)
Tampa
(n=202)
Worcester
(n=200)
Research questions

What are the barriers to PADs?



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?


Barriers to completion and use
Different barriers perceived by consumers and
clinicians
Are PAD instructions feasible and consistent with
clinical practice standards?
Do PADs work as intended?

Might they have other, indirect benefits?
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
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
Psychiatrists: Do you agree with North Carolina’s law regarding
Advance Instructions (AI) for Mental Health Treatment and
Health Care Power of Attorney (HCPA)?
Partly
Yes
100%
80%
13%
60%
22%
40%
67%
54%
20%
0%
AI
HCPA
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.
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
PAD study outcomes

Short-term outcomes



Intermediate outcomes



PAD completion rate; change in perceived
barriers to completion
PAD document structure & content
Outpatient treatment engagement
Working alliance with clinicians
Long-range outcomes


Frequency of mental health crises
Reduction of coercive crisis interventions and
involuntary treatment
Consumers’ perceived barriers to
completing PADs



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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
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
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%
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.
PAD content: Relapse Factors


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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.
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

PAD content: Medications

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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.
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.”
PAD content: Other Information

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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.
Do PADs work?
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)

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.”
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

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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.
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
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
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.
Cooperation from clinicians and systematic
implementation is needed in order for PADs to
succeed.
www.nrc-pad.org
www.nrc-pad.org