Shared Decision Making and Medication Management in the Recovery Process

Article (PDF Available)inPsychiatric Services 57(11):1636-9 · December 2006with88 Reads
DOI: 10.1176/ · Source: PubMed
Mental health professionals commonly conceptualize medication management for people with severe mental illness in terms of strategies to increase compliance or adherence. The authors argue that compliance is an inadequate construct because it fails to capture the dynamic complexity of autonomous clients who must navigate decisional conflicts in learning to manage disorders over the course of years or decades. Compliance is rooted in medical paternalism and is at odds with principles of person-centered care and evidence-based medicine. Using medication is an active process that involves complex decision making and a chance to work through decisional conflicts. It requires a partnership between two experts: the client and the practitioner. Shared decision making provides a model for them to assess a treatment's advantages and disadvantages within the context of recovering a life after a diagnosis of a major mental disorder.
PSYCHIATRIC SERVICES November 2006 Vol. 57 No. 11
Mental health professionals com-
monly conceptualize medication
management for people with se-
vere mental illness in terms of
strategies to increase compliance
or adherence. The authors argue
that compliance is an inadequate
construct because it fails to cap-
ture the dynamic complexity of
autonomous clients who must
navigate decisional conflicts in
learning to manage disorders
over the course of years or
decades. Compliance is rooted in
medical paternalism and is at
odds with principles of person-
centered care and evidence-
based medicine. Using medica-
tion is an active process that in-
volves complex decision making
and a chance to work through
decisional conflicts. It requires a
partnership between two ex-
perts: the client and the practi-
tioner. Shared decision making
provides a model for them to as-
sess a treatment’s advantages
and disadvantages within the
context of recovering a life after
a diagnosis of a major mental dis-
order. (Psychiatric Services 57:
1636–1639, 2006)
lthough the exact definitions of
compliance and noncompliance
remain a topic of debate, Weiden and
Rao (1) suggested that the most com-
mon definition of the word is “a devi-
ation or cessation of a medication reg-
imen that is less than what was rec-
ommended by the doctor.” Compli-
ance interventions are often designed
to increase clients’ behavioral con-
formity to a practitioner’s view of op-
timal treatment. Shared decision
making diverges radically from com-
pliance because it assumes that two
experts—the client and the practi-
tioner—must share their respective
information and determine collabora-
tively the optimal treatment. Con-
temporary evidence-based approach-
es to the management of long-term
medical illnesses are based on the
process of shared decision making.
Similarly high standards should be
adopted in psychiatry. In this Open
Forum, we present a rationale for
adoption of the shared decision-mak-
ing approach in psychiatry from both
the client and practitioner points of
The client’s perspective
Choice, self-determination, and em-
powerment are foundational values
for people with disabilities, including
people with psychiatric disabilities
(2). Shared decision making is a clini-
cal model that upholds these values.
It helps to bridge the empirical evi-
dence base, which is established on
population averages, with the unique
concerns, values, and life context of
the individual client. From the van-
tage point of the individual health
care client, the efficacy of a particular
medication is not certain. Instead,
when a person is handed a prescrip-
tion for medication, the question of
how the medication will affect the in-
dividual becomes an open experi-
ment for two co-investigators—the
client and the practitioner.
Using medications is a dynamic
journey, not a static event, particular-
ly for people with long-term disorders
(3). Researchers have noted that
many clients approach medications
like naïve scientists conducting a lay
assessment of medication effects—
not just on symptoms but on personal
identity and quality of life as well (4).
In this respect, people with psychi-
atric disabilities are very similar to
other groups of people with long-
term disorders. As with people who
are HIV positive and using antiretro-
viral treatment, people with psychi-
atric disabilities sometimes assess that
the treatment is worse than the disor-
der and reject or alter treatment ac-
cordingly (5). As with people who
have rheumatoid arthritis, people
with psychiatric disabilities some-
times assess that medications work
best when used strategically to deal
with certain symptoms or only when
the symptoms are present and are ex-
perienced as distressing (6,7). As with
people who are HIV positive, people
with psychiatric disabilities some-
times assess that it is not worth using
medications because of the discrimi-
nation and social rejection associated
with medication use (3,8). As with
cancer patients, people with psychi-
atric disabilities sometimes reject
medications because they are an un-
Shared Decision Making
and Medication Management
in the Recovery Process
PPaattrriicciiaa EE.. DDeeeeggaann,, PPhh..DD..
RRoobbeerrtt EE.. DDrraakkee,, MM..DD..,, PPhh..DD..
Dr. Deegan is Director of Pat Deegan,
Ph.D., and Associates, L.L.C., 17 Forest
Street, Byfield, MA 01922 (e-mail: patri- She is also with
the University of Kansas School of Social
Welfare, Lawrence. Dr. Drake is with
Dartmouth Psychiatric Research Center,
Lebanon, and with the Department of
Psychiatry, Dartmouth Medical School,
Hanover, New Hampshire.
OOppeenn FFoorruumm
dee.qxd 10/19/2006 9:51 AM Page 1636
wanted reminder of illness (9,10). As
with people who have hypertension,
people with psychiatric disabilities
sometimes do not see the necessity of
using medications because they are
uncertain that they are actually ill
(11). Finally, as with many people
with long-term disorders, people with
psychiatric disabilities sometimes
conclude that it is best not to use
medications as prescribed because
they are ineffective (12).
The compliance model, with its
emphasis on obedience to medical
authority, is far too simplistic to ad-
dress the complex decision-making
processes that are required to discov-
er optimal use of medications within
the process of recovering from major
mental disorders. For instance, Dee-
gan (13) found that people with psy-
chiatric disabilities often use “person-
al medicines,” defined as self-initiat-
ed, nonpharmaceutical strategies, to
improve wellness and avoid unwant-
ed outcomes, such as hospitalization.
Personal medicine includes activities
and interventions that give life mean-
ing and purpose, that raise self-es-
teem, and that promote a sense of
mastery and accomplishment. When
medications support or enable people
to more effectively pursue activities
such as employment, parenting, and
returning to school, they are per-
ceived by clients as a valued tool in
the recovery process. However, if
medications interfere with personal
medicine, such that clients cannot en-
gage in valued social roles and activi-
ties, the medications are viewed as
blocking the recovery process and are
often rejected. Insistence on compli-
ance in such situations is experienced
as countertherapeutic and unhelpful.
On the other hand, shared decision
making allows the practitioner to
work as an expert collaborator, active-
ly helping the client to identify per-
sonal medicines and to optimize regi-
mens and dosages of specific medica-
tions to support and complement the
recovery of valued social roles.
Sometimes there can be tension
between the practitioner’s and client’s
views of medication effects. Deegan
(13) described this as a clash of per-
spectives and questioned who has the
privilege to judge that a medication is
“working.” For example, a practition-
er might perceive that the medication
is helping the client to be more in
control, but the client might feel that
“the medication is controlling me.”
The practitioner might observe that
medication has returned the client to
baseline, but the client might experi-
ence feeling that “I am not myself
anymore.” The practitioner might
conclude that symptom abatement
has been achieved, but the client
might experience that the price of
symptom abatement has been a dis-
abling transformation of self into a
“drugged me” or a “not-me.” The
compliance model fails to provide a
framework for respectfully resolving
such differences in perspective. The
result is often an awkward and un-
helpful standoff, in which the practi-
tioner insists on compliance and the
client quietly discontinues medica-
tions. Shared decision making, on the
other hand, acknowledges two kinds
of expertise and requires the two ex-
perts to explicitly establish consensus
on what the problem is, what the
treatment goals are, and how they will
know when the goals have been met.
The practitioner’s perspective
Psychiatric practitioners understand
that current medications can be effi-
cacious in terms of ameliorating the
symptoms of severe mental illness
and preventing relapses (14). They
also recognize that nonadherence
among mental health clients who are
given these prescriptions is high,
usually 50 percent or greater (15).
The discrepancy between the estab-
lished efficacy of medications and
the significant number of clients
who do not use them as prescribed
can be frustrating for the clinician
(16) and has historically been attrib-
uted to a failure on the part of
clients to follow treatment as pre-
scribed by the practitioner (17).
This construction of compliance as
the client’s failure to obey medical ad-
vice has been criticized along a number
of dimensions over the past three
decades: it is rooted in medical pater-
nalism (3,18), it lacks an appreciation
of the importance of the client’s role in
health care decisions (19), and it attrib-
utes deviance or blame to clients who
do not follow medical advice (6). Addi-
tionally, it has been noted that in an era
of rapidly evolving scientific knowl-
edge, the evidence base supporting
and opposing treatment options is
complex and at times contradictory or
unclear (20). Thus the very ethics of
practitioners who make decisions for
clients and expect them to comply has
been called into question (21).
Intuitively, practitioners have long
understood that more than an insis-
tence on compliance is required to
help clients use medications effec-
tively. Thus, in the midst of the enor-
mous body of research literature on
compliance and interventions to im-
prove it, there has always been the
call to move beyond compliance to
therapeutic alliance. As early as 1957,
Balint (22) contrasted patient-cen-
tered medicine with illness-centered
care, effectively challenging medical
paternalism by moving the client
from the periphery to the center of
medical decision making. In psychia-
try, as early as the 1970s a negotiated
approach to medication management
was proposed as a two-stage process
of forming a clinical hypothesis and
negotiating a mutually acceptable
treatment disposition between the
client and practitioner (23). In the
1980s Diamond (24) suggested that
clients’ medication use sometimes re-
flected a desire to have control over
their lives and outlined strategies for
practitioners to establish a therapeu-
tic alliance, including framing med-
ication use in the context of the
client’s life, goals, and history. In the
1990s Frank and Gunderson (25)
found a superior treatment course
and outcome for clients who had
good therapeutic alliances with prac-
titioners. Corrigan and colleagues
(26) proposed reframing compliance
as a collaborative relationship in
which both parties assume responsi-
bility for creating a treatment regi-
men that will actually be carried out.
Frank and colleagues (27) described a
philosophy of outpatient care that in-
cluded efforts to share information
with clients over time and to present
the treatment experience as an exper-
iment in which the client and the cli-
nician are coinvestigators with com-
plementary areas of expertise. Aquila
and colleagues (28) proposed that the
therapeutic alliance be reframed as a
rehabilitation alliance involving a sup-
PSYCHIATRIC SERVICES November 2006 Vol. 57 No. 11
dee.qxd 10/19/2006 9:51 AM Page 1637
portive network of care, including the
practitioner, client, family members,
friends, and other caregivers.
In the 21st century, the medical pa-
ternalism in which the construct of
compliance is rooted was further
challenged by the Crossing the Qual-
ity Chasm report by the Institute of
Medicine (29). In that report, person-
centered care was cited as one of six
overarching aims to achieve quality in
medicine and was characterized as
being “responsive to individual pa-
tient preferences, needs, and values
and ensuring that patient values
guide all clinical decisions.” The 2006
follow-up report (30) found that the
framework of the Quality Chasm re-
port was applicable to providing
health care for people with substance
abuse or mental health conditions,
despite some unique challenges
posed by these populations. That re-
port again called for care to be person
centered and supportive of the deci-
sion-making abilities and preferences
for treatment and recovery of people
with substance use or mental health
The inexorable trend is away from
compliance and toward shared deci-
sion making, which entails a process
of collaboration to arrive at a mutual-
ly acceptable plan for moving forward
in the treatment process. This
method involves two experts: one
who knows the scientific literature
and has clinical experience, and one
who knows his or her own prefer-
ences and subjective experiences.
The practitioner’s role is not to ensure
compliance but rather to help the
client learn to use medications and
other coping strategies, optimally in
the process of learning to manage his
or her own illness. Shared decision
making requires the type of therapeu-
tic relationship needed to help the
client manage co-occurring substance
abuse, to avoid or minimize medica-
tion side effects, and to develop prac-
tical solutions to using medications in
ways that support recovery. In the
shared decision-making paradigm,
the language of medical authority,
compliance with therapy, and coer-
cive treatments disappears in favor of
terms and concepts like education,
working alliance, individual experi-
ence, informed choice, collaborative
experiments, and self-management of
There are undoubtedly situations
in which shared decision making is
not fully applicable. For instance, in
emergency situations or in situations
in which there is temporary deci-
sional incapacity, shared decision
making may not be achievable. In
such situations, psychiatric advance
directives can help protect client au-
tonomy and provide practitioners
with a guide to making treatment de-
cisions that are guided by clients’
preferences and values. Advance di-
rectives are a method of treatment
planning consistent with client-cen-
tered care and shared decision mak-
ing. They have been shown to be of
substantial interest to clients who are
high users of crisis and hospital serv-
ices, especially if practitioners are
supportive of their use (31).
Future directions
Research on shared decision making
in psychiatry is under way (32–34),
but much more is needed. We need
to better understand the dynamic na-
ture of decisional conflict experi-
enced by people with psychiatric dis-
abilities over the course of the disor-
der and recovery. Rigorous qualita-
tive studies are particularly helpful in
mapping the phenomenology of such
complex processes (3,35–37). We
need to develop and study tools that
support the shared decision-making
process. Specifically, up-to-date, In-
ternet-based decision support aids
must be developed so that practition-
ers can quickly access relevant re-
search findings (38). Clients also re-
quire accessible information and de-
cision aids in order to make decisions
about treatment options in light of
personal life goals, values, and expe-
rience (39). Additional interventions
are needed to support clients’ move-
ment through decisional conflict, to
help activate clients to become in-
volved in the shared decision-making
process, and to train practitioners in
communicating and collaborating
with clients (40). Support for clients
who are working through decisional
conflict should be multidimensional
and coordinated across service types
and settings. Complementary com-
ponents for self-help, peer-to-peer
support, case management services,
and medical teams should be devel-
oped in settings that include mental
health clinics, hospitals, and primary
medical care. The effectiveness of
these supports and interventions, as
well as related cost savings, should
also be researched.
Using medication is an active process
that involves complex decision mak-
ing and a chance to work through de-
cisional conflicts. It requires a part-
nership between two experts: the
client and the practitioner. Shared
decision making embraces current
science, individual experiences, the
client’s right to autonomy, informed
decision making, the practitioner’s ex-
pertise, and the dyad’s skill in forming
an alliance. It provides a model for
practitioners and clients during the
dynamic process of assessing a treat-
ment’s advantages and disadvantages
within the context of recovering a life
after a diagnosis of a major mental
The authors acknowledge the University
of Kansas School of Social Welfare for its
support of this research on shared deci-
sion making.
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dee.qxd 10/19/2006 9:51 AM Page 1639
    • "However, knowledge of SDM as method is limited within the mental health field (Adams et al., 2007; Deegan & Drake, 2006) and research to date has focused primarily on SDM in medical decisions in somatic care (Duncan et al., 2010; O'Connor et al., 2001 O'Connor et al., , 2007). Studies available regarding patients' desire for shared decisions shows that they want more information and influence over their care (Deegan & Drake, 2006; Hamann et al., 2005) and that their willingness to engage in SDM is dependent on the quality of the patientprovider relationship (Eliacin et al., 2015). Studies, which focus on implementing SDM in psychiatric services are few and there are currently no studies on the implementation and effects of SDM in community-based mental health services. "
    [Show abstract] [Hide abstract] ABSTRACT: Background: Despite the potential impact of shared decision making on users satisfaction with care and quality in health care decisions, there is a lack of knowledge and skills regarding how to work with shared decision making among health care providers. Aim: The aim of this study was to evaluate the psychometric properties of three instruments that measure varied dimensions of shared decision making, based on self-reports by clients, in a Swedish community mental health context. Method: The study sample consisted of 121 clients with experience of community mental health care, and involved in a wide range of decisions regarding both social support and treatment. The questionnaires were examined for face and content validity, internal consistency, test-retest reliability and construct validity. Results: The instruments displayed good face and content validity, satisfactory internal consistency and a moderate to good level of stability in test-retest reliability with fair to moderate construct correlations, in a sample of clients with serious mental illness and experience of community mental health services in Sweden. Conclusions: The questionnaires are considered to be relevant to the decision making process, user-friendly and appropriate in a Swedish community mental health care context. They functioned well in settings where non-medical decisions, regarding social and support services, are the primary focus. The use of instruments that measure various dimensions of the self-reported experience of clients, can be a key factor in developing knowledge of how best to implement shared decision making in mental health services.
    Article · Jul 2016
    • "Within residential-continuum supportive housing programs, the role of medication management takes on an added dimension because compliance with medication and treatment is an important criterion in determining whether residents qualify for less-restrictive housing options. Overall in mental health care, decision making about medication and treatment has shifted given the influence of the recovery movement (Deegan & Drake, 2006). The focus on recovery has been endorsed by the U.S. Department of Health and Human Services and is now a guiding framework for transformation of mental health services, moving care beyond symptom reduction to addressing what each person needs to pursue a meaningful life (Davidson, Rowe, Tondora, O'Connell, & Lawless, 2008 ). "
    [Show abstract] [Hide abstract] ABSTRACT: Objective: Growing recognition exists of housing as a social determinant of health, and thus, health care reform initiatives are expanding the reach of health care beyond traditional settings. One result of this expansion is increased Medicaid funds for supportive-housing programs for people with severe mental illnesses. This qualitative study explores the ways in which case managers working in a supportive housing program approach treatment and how their approach is influenced by both program requirements and their beliefs about mental illness. Method: The study is part of a longitudinal qualitative study on recovery for people with severe mental illnesses living in supportive housing. Multiple interviews (n = 55) with 24 case managers from a residential-continuum supportive-housing program were conducted over 18 months. To provide an in-depth view of case manager perspectives, the study uses thematic analysis with multiple coders. Results: Overall, case managers understand supportive housing as being a treatment program but predominantly characterize treatment as medication management. The following themes emerged: believing medication to be the key to success in the program, persuading residents to take medication, and questioning the utility of the program for residents who were not medication adherent. Conclusions: Case managers understand supportive housing to be a treatment program; however, given the external constraints and their own beliefs about mental illness, case managers often equate treatment with taking medication. Study findings demonstrate the need to train case managers about mental health recovery and integrated health care. The findings also have implications for policies that tie housing to services.
    Article · Jul 2016
    • "This observation also is consistent with recent research addressing cultural perspectives of psychiatric medication (Vargas et al., 2015) as well as with calls among psychiatrists to engage in " shared decision making " with clients who are reluctant to take medication. Such calls recommend discussion about the pros and cons of medication in terms of what clients care most about, such as their engagement in " valued social roles and activities, " and their subjective interpretations of side effects (Deegan & Drake, 2006, pp. 1636-1637). "
    [Show abstract] [Hide abstract] ABSTRACT: The authors present a narrative case study of an urban American Indian male college student who integrated Indigenous and professional therapies during an acute period of stress, loss, and depression. As the first published case of an American Indian in an urban context, this article expands on previous clinical cases by focusing on the client’s perspective relative to his own conceptions of help-seeking behaviors. Based on qualitative analysis of five audio-recorded interviews, this case utilizes an innovative methodology to portray four approaches to healing (medication, counseling, bonding, and spirituality) that contribute to holistic well-being. Implications for counseling psychologists include being aware of how some American Indian clients may (a) view professional treatment dynamics through a Native cultural lens (e.g., seeing ideal communication as a “rhythm”), (b) utilize an expanded range of therapeutic agents, (c) resist medication for cultural and spiritual reasons, and (d) refrain from discussing spiritual matters with professionals.
    Article · Jun 2016
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