FACILITATING USE OF ADVANCE DIRECTIVES BY PEOPLE
WITH MENTAL ILLNESS: AN IMPLEMENTATION STUDY
Law, Business, Policy, & Education
SCHOOLS OF LAW AND MEDICINE
Richard Bonnie, LL.B.; Tanya Wancheck, Ph.D.; Laura McLaughlin, M.P.H.
Duke University Team Members: Jeffrey Swanson, Ph.D.; Christine Wilder, M.D.
Advance directives provide a legal instrument for
people with serious mental illness to plan ahead
for their own treatment during a future crisis.
Distribution of Perceived AD Benefit Scores
PUBLIC HEALTH PROBLEM
BY SAMPLE GROUP
Many people with serious mental illness (SMI) are unengaged (or
sporadically engaged) with the treatment system, non-adherent to
medication, and prone to relapse and incapacity. As a result, they are
at risk of coercive mental health intervention or involvement with the
criminal justice system.
Advance directives (ADs) provide a legal instrument for people with
SMI to plan ahead for their own treatment during a future crisis by
authorizing a health care agent and documenting treatment
preferences in advance. Previous research suggests ADs can promote
empowerment, sustain treatment engagement, and reduce the need
for coercion.
POLICY CONTEXT IN VIRGINIA
Established in 2006, the Commission on Mental Health Law Reform
focused on consumer empowerment as a foundational element of
reform strategy. Rather than creating a stand-alone psychiatric
advance directive statute to provide people with SMI the option to
complete ADs, the Commonwealth’s Health Care Decisions Act
(HCDA) was revised to incorporate mental health care. When the
revised HCDA was ratified, information was lacking on how the law
would be implemented, how it would interact with involuntary
treatment law in real-world practice, and whether it would ultimately be
effective in improving the health of those with SMI.
RESEARCH STRATEGY
•
Survey stakeholders to ascertain baseline knowledge,
expectations and attitudes about the HCDA statute and the use
of ADs for mental health care
Document implementation activities in four “vanguard sites” and
measure the effect on the AD completion rate
Measure how completing an AD affects the clinical course in
vanguard sites through aggregated data and through
interviews with the client sample
STUDY METHODS
15
NO AD
TRAINING
28
24
14
10
10
5
3
2
7
5
15
5
Mean
25%
20
21
25
ATTENDED AD
TRAINING
19
18
11
10
5
2
1.5
1.75
1
2.00
2
2.25
9
3
2.50
2.75
3.00
3.25
3.50
3.75
4.00
POS SCORE
1 Disagree
Strongly
2 Disagree
Somewhat
3 Agree
Somewhat
4 Agree
Strongly
ADDITIONAL SURVEY FINDINGS
COMPLETED Internet-based survey of major stakeholder groups
(N=485), including hospital and community service board administrators,
clinicians, mental health consumers, family members, and advocates.
ONGOING Structured interviews with 100 SMI consumers in Community Service Boards who have completed ADs. Interviews focus on
their experience and outcomes with facilitated ADs. Content analysis
of de-identified completed AD documents.
• ADs are expected to
improve treatment
engagement and
continuity of care for
people with serious
mental illness, thereby
decreasing the occurrence of outcomes such
as suicide and legal
coercion, which are
painful and costly to
individuals and society.
1 Clinicians and administrators who reported having participated in
AD training also reported more positive attitudes about ADs.
HCDA, but may overestimate the use of ADs by their clinicians.
Our initiative aims to identify the key barriers and enabling factors that
will determine whether the use of ADs is successfully implemented
among people with SMI and will measure its effect on their health
outcomes, safety, and quality of life. The study’s findings will be used
to develop specific recommendations to improve the implementation
process and ensure a positive impact of the HCDA in Virginia as well
as in other states interested in implementing similar policies.
•
20
2 Administrators are more familiar with AD policy and changes to the
OBJECTIVE
•
Mean
25%
Percent
LEGAL INNOVATION
• This “real time” study of
activities promoting use
of advance directives
(ADs) in four sites
documents barriers to
implementation and
steps taken to overcome
them during a
coordinated process.
3 Relevant stakeholder groups broadly support the implementation of
ADs under Virginia’s HCDA, but…
• Current knowledge of HCDA varies substantially across and
between stakeholder groups
• Practical experience with AD facilitation and implementation is
lacking
• Specific training in legal and clinical aspects of ADs is desired
and needed
IMPLEMENTATION FINDINGS
1 Substantial barriers threaten to derail implementation; these need
to be identified, confronted, and creatively addressed over time:
• Real and perceived lack of resources for facilitation of ADs
• Real and perceived liability for clinicians
• Information system infrastructure lacking
• Attitudinal and practice change in crisis care is needed to ensure
that AD documents will be available, read, and followed
2 Successfully implementing ADs will require a multi-pronged approach:
• Vanguard sites (Charlottesville/Albemarle, Prince William
County, Chesapeake, and Norfolk) to serve as exemplars
• “Bottom-up” as well as “top-down” adoption
• Incentivize front-line staff
• Different types of facilitators and different methods may be
appropriate to reach various AD constituencies
• Targeted, ongoing training sessions
Presidential Inauguration Research Poster Competition
April 14, 2011
• Virginia is the first state
to provide a meaningfully
enforceable Ulysses
Contract and is unique in
embedding ADs within
health care decisions
law.
• The development,
implementation, and
evaluation of this new
law has featured close
collaboration of
consumers, clinicians,
administrators,
policymakers, and
researchers.