Department of Psychiatry, University of Vienna, Austria
Bronx Psychiatric Center, New York
Nathan S. Kline Institute for Psychiatric Research, New York, USA
Correspondence: Kim Hopper, Nathan Kline Institute, 140 Old Orangebury Road, Orangebury, New York, USA; e-mail: hopper{at}nki.rfmh.org
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ABSTRACT |
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Aims To explore the interests, concerns and planning activities of informed mental health service users contemplating such directives.
Method Standard qualitative research techniques were used: field observations, interviews, focus groups, archival research and key informant interviews; 33 persons participated in the interviews and focus groups. Transcripts were coded and analysed for thematic content, and results were member-checked.
Results Training set in motion labour-intensive projects: conceptualising how a psychiatric advance directive would work in ones life, mobilising resources, reviewing past experiences and assessing risks. Especially meaningful was the prospect of being treated as a responsible agent in future interactions with the mental health system.
Conclusions Advance directives are best thought of as complex planning tools for future psychiatric crisis management, rather than focal interventions to enhance compliance. Research is needed to explore the institutional response to this prospective decision-sharing initiative.
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INTRODUCTION |
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The only randomised effectiveness study of psychiatric advance directives showed no impact on outcome of care with regard to compulsory admissions, hospital days or patient satisfaction (Papageorgiou et al, 2002). However, as with other complex community-based interventions (Schoenwald & Hoagwood, 2001; Ablon & Jones, 2002; Hohmann & Shear, 2002), questions have been raised about actual operational specifics and how they might have influenced the impact of local efforts to implement such directives (Thomas, 2003).
No scientific consensus exists on what the intervention is. It is unclear what it means for people with severe and persistent mental illness to undertake the anticipatory planning culminating in an advance directive. This study empirically explores the deliberations of informed mental health service users contemplating this option.
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METHOD |
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Formal training in psychiatric advance directives, by the user-run Resource Center, had begun in May 2000. Up to five educators crisscrossed the state, offering intensive sessions, working with official healthcare proxy forms, to recipients of public mental health services. By January 2002 (when recruitment for this study ended), the programme had logged 279 training sessions statewide, involving nearly 6000 participants.
Data collection
Standard qualitative techniques were employed. Field observations were made
over a period of 6 weeks by one of the authors (M.A.), who attended eight
training sessions. These sessions also served as recruiting sites for
potential interviewees and focus group participants. Archival research was
undertaken to locate and review relevant legislation and memoranda, annual
reports of the training programme and interim evaluations of its work. Key
informant interviews were conducted with the training programme director,
three trainers, state officials, legislative aides, advocates and peer
specialists. Extensive open-ended interviews were conducted by one or two
researchers (M.A. and K.H.) with 20 individuals who had received training in
the preparation of advance directives at one of three different psychiatric
rehabilitation programmes. The aim of our study was to interview ten people
who had decided to compile a psychiatric advance directive after participating
in the training and ten people who had declined to do so. The latter were
recruited from among 88 of 270 trainees who had expressed interest in
participating in the study, as were three of those who had decided to draft an
advance directive; the other seven people in the advance directive group were
recruited through snowball sampling. Another 13 people were recruited for two
focus groups. All 33 participants (Table
1) had extensive experience with mental health services and crisis
interventions; most had been hospitalised on several occasions for severe
mental illness. Interviews lasted 16 h and could take two sessions to
complete; the focus groups ran for 1 h. Participants were invited to
think out loud as they reflected on the training and recalled
their subsequent reasoning and actions vis-à-vis psychiatric
advance directives. All sessions were tape-recorded and transcribed. Finally,
preliminary results underwent provisional member-checking in subsequent
discussions with the training project director and six study participants.
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After the study had been fully explained, all participants gave written informed consent to the taping of all communications, analyses of transcripts and publication of results and anonymous quotes. Informed consent forms had been approved with the study plan by the New York State Office of Mental Healths Institutional Review Board.
Analysis
Transcripts of interviews and focus group meetings were coded for content
following prescribed conventions (Miles
& Huberman, 1994; Emerson
et al, 1995; Ryan
& Bernard, 2000). Data collection (interviewing) and initial
analysis (coding) proceeded in a linked fashion. All three investigators
closely read transcripts of the initial interviews, identifying topics of
interest (open coding) either because they pertained to issues already flagged
in the literature (e.g. comprehension, illness and identity, coercion) or
because they emerged in the interview as issues of vital concern to the
participant (ensuring respect, patching system gaps in record-keeping,
customising treatment). These separate readings were then compared and
extensively discussed, and a synthetic set of codes was constructed to guide
both the conduct of the next interviews and analysis of their transcripts.
This process was repeated, modifying the working codebook and recoding earlier
sets of transcripts in a directed fashion (focused coding), then testing the
most recent codes on fresh transcripts, until a final set of 10 codes (see
Appendix) and 24 sub-codes was arrived at; in this way,
saturation was reached, at which point new data could be
accommodated by existing categories. This coding protocol was systematically
applied to the entire corpus of transcribed text using software (QSRN6)
to facilitate marking and retrieval of segments. The substantive groupings of
text (e.g. knowledge of advance directives; feasibility worries; family and
friends) were examined and interrogated so that higher-order
themes concepts (Becker,
1998), schemata (Agar &
Hobbs, 1985) and low-level theories
(Strauss & Corbin, 1990) might be analytically derived. This process was aided by working
memoranda that set down provisional interpretations or hypotheses about what
we had witnessed. In this way, we attempted to map the contours (or cultural
domains) of a still-evolving practice: the implicit rules, organising
anxieties, defined tasks and unresolved tensions at stake in these attempts to
reckon with the prospects of psychiatric advance directives
(Spradley, 1980).
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RESULTS |
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After describing the training process, we report results under two headings: the work involved and the meanings construed. To anticipate somewhat: it was the deliberating process itself a process that can all too conveniently be black-boxed in simple outcome studies that emerged as the defining feature of this inquiry.
Training
Eight workshops, involving one or two trainers and 10100
participants, were observed. All took place as a part of the regular
rehabilitation curriculum at participating sites. Written material and actual
forms were distributed, a detailed run-through of the process was conducted
and questions actively solicited. The last typically concerned the legal and
administrative basis of psychiatric advance directives, their scope and
limitations, procedures for revising or revoking them and details regarding
appointing an agent. Most of those attending the workshops clearly understood
what the directives were about and endorsed their intent. Discussion of
probable logistical complications (e.g. lack of a central registry), however,
raised doubts about the feasibility of these directives.
Work
Grasping the concept
Interviewees showed no difficulty in understanding the concept of
psychiatric advance directives. The syntax might have been irregular at times
It means you have to go back to the word itself, it means
advance is thinking forward, in a moment of center and lucidity and being
directive but, as subsequent discussion confirmed, the meaning
was clear. Several interviewees and focus group members were already familiar
with healthcare proxies through prior experience with kin or friends. Others
had learned about them before the training from consumer advocates or
presentations in mental health settings.
Imagining directives in ones own life
Notwithstanding the intuitive appeal of psychiatric advance directives,
committing to the process that would culminate in a fully executed directive
proved difficult because it meant individualising what one would entail.
Participants were drawn to the concept because their wishes would be more
likely to be honoured in situations in which they had felt powerless in the
past. A designated agent and documented preferences would improve
record-keeping and communication in a system widely seen as inadequate in
both.
Participants imagined trusted agents undertaking interpretation and negotiation on their behalf: articulating their wishes, translating what clinicians were saying and responding in accordance with the participants preferences. Directives held the promise that participants would not have to explain everything yet again, that they would be believed without having to persuade strangers, that confrontations could be avoided through judicious intervention by their proxy and that appropriate treatment would be expedited. Instead of fruitless and increasingly furious exchanges with hospital personnel, one participant imagined producing a card with her proxys name and stepping back to let negotiations proceed in a calm and orderly fashion.
No participant viewed advance directives as a blanket means to refuse treatment. None seized upon it to make a point or lodge a grievance. Without exception, the participants were concerned chiefly with improving their treatment, ensuring that their own experience would become part of the evidence base on which future decisions would be predicated. The directives were designed to inform clinical teams, and a great deal of thought went into enhancing their instructive value. Interviewees were hopeful, too, that having a directive would alleviate the burden on others by assuming responsibility for treatment in advance of crises.
Imagining advance directives in action could also produce reasons for avoiding them. One interviewee feared that executing a directive could actually invite the situation it was designed to manage. For others, pragmatic issues dominated: more paperwork, more hassles; concerns that the directive might not stand up in court or would be overridden in practice. For many, past experience counselled scepticism, if not outright pessimism: in their minds, the mental health system could hardly be trusted to reform merely because of this legalistic tool. Such doubts could be disabling, derailing the deliberation process early on.
From concept to labour
Finding oneself intrigued by the notion and personalising the concept of an
advance directive does not yet commit one to the necessary work of executing
it. A number of catalysts can be identified in the accounts of participants
who took the step. These tended to operate in cumulative fashion, acquiring
persuasive force over time (only a few participants initiated the process soon
after the training). Further discussions with mental health professionals
clearly motivated some to proceed. Others had been asked about advance
directives during their last stay in hospital and now had occasion to act.
Many were nudged by terminal illness or psychiatric hospitalisations affecting
their families or partners. For others, a reconfigured personal network
supplied previously missing others who could be trusted to serve as
proxies.
Reviewing past experience
An essential part of the labour was a systematic review of past experiences
with psychiatric crises, hospital admissions and medication history.
Rehearsing the past, we were repeatedly told, is an exercise fraught with
trepidation and pain but necessary to make sense of your own
history. Contemplating an advance directive can reframe a psychiatric
history as a resource from which valuable guides to future system involvement
might be gleaned. It can also be risky: memories of traumatic experiences
(psychotic crises or difficult treatment situations) can be both upsetting and
feared as possible triggers of a new episode. This reinforces the impression
that the drafting of advance directives may need to proceed according to the
individuals own timetable, as service users work through their personal
riskbenefit ratios.
Mobilising resources
Executing an advance directive means negotiating a host of practical
difficulties: securing the technical assistance to complete the documentation,
filing the requisite copies at appropriate sites, notifying key collaborators
and setting up procedures for periodic review. Appointing the agent proved the
decisive issue. Family members were typically the first option, with siblings
and aunts or uncles often preferred to parents (seen as too close to serve as
advocate for the individuals wishes). Some candidates were eliminated
because the responsibility would be too hard on them or because
they might be unable to act with the requisite discretion. Peers were
considered, together with concerns that they might not be seen as competent by
professionals. Some believed that appointing a mental health professional
would give them a distinctive edge. A number were disappointed to learn that
their own therapists refused because of possible conflict of interest. Even
when appropriate candidates were identified, some were reluctant to approach
them, fearing rebuff.
Completing the process
Respondents varied greatly in the duration of decision-making. Again, few
executed a directive in the immediate aftermath of training. Others took years
to mobilise the resources and muster the courage to see the process through.
For one interviewee, it had taken a decade-long, wholesale reconfiguration of
her personal life before the trusted others were in place. It was not unusual
for several versions to be discarded before a satisfactory directive was
completed. In all but one executed, the process included appointing an
agent.
Although not a specific goal of this study, we did learn much about the content of psychiatric advance directives. Apart from preferences for certain hospitals or specific professionals, requests to allow favoured coping strategies (such as being left alone at times or listening to music) and boundary rules (such as not being touched by staff without being asked) or to proscribe certain drugs or treatments (such as electroconvulsive therapy) were among the detailed instructions. Favoured medications were also named and dosages specified. Reasons for choices, drawn from past experience with ineffectiveness or unwanted side-effects, were documented. Some listed people whose company they preferred and others whose presence they could do without. Much thought was given to ensuring that the advance directives were feasible and that preferences fell reasonably within the range of options of the mental health system. Participants were intent on not compromising mental health professionals with either the content or the style of the directive. It was widely assumed that an ill-advised set of instructions for the appointment of an overly aggressive advocate could backfire, provoking resentment and non-compliance on the part of healthcare staff.
Meaning
Taking on responsibility
Committing to the work of drawing up an advance directive was demanding and
consequential. For many, this meant accepting a new order of responsibility
for managing their illness, containing the trouble crises might cause,
securing the allegiance of essential others and thinking through what would
constitute a productive response from mental health professionals. It meant
taking oneself seriously as an actor in the orchestration of ones
treatment, not merely being its object or victim.
The ordeal of looking ahead - and back
Anticipatory planning for psychiatric emergencies is both taxing and
unnerving. Undertaking a searching inventory of past experience and
present-day resources, facing up to the possibility of losing
capacity and the humiliation it so often entails, taking pre-emptive
action to forestall gratuitous harm and ensure interventions of proven
benefit, and asking someone to assume the role of agent: this takes courage
and perseverance. Effectively taking the process through to completion was a
source of great satisfaction and pride for the participants.
A doubly instructive effort
Psychiatric advance directives provide a means of coming to terms with the
exigencies of living with severe mental illness and understanding how others
figure in that story. Their benefits additionally extend to critically
positioned future readers of these directives mental health
professionals in crisis settings whose knowledge of the
directives author would be substantially enhanced.
Holding on to ones identity
Making formal arrangements for ones true self to be present,
consulted and represented by a surrogate was a much-prized feature of
psychiatric advance directives. The force of the document (that they
would have to honour it) resided in its power to transmit the
intentions of a self whose capacity calmly to articulate its interests could
become degraded at times. In the hectic circumstances of psychiatric crises,
the directive would contain and project a corrective competence, stemming the
inertial process of becoming just a psychiatric patient. Here
was written evidence that people had thought enough of themselves
before coming to the hospital that they put some thought into this.
That made it a thing of respect.
A new form of cooperation
Advance directives serve not only a protective purpose (as a
shield and buffer) but a collaborative purpose (as
a contract) as well. In exchange for stipulating their preferred
terms and conditions for receiving care, individuals pledge to work with the
system, negotiating problems through the intervention of an appointed
intermediary.
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DISCUSSION |
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Discordant cases
Even on their own terms, qualitative methods are incomplete if they fail to
account for discordant cases in the textual evidence amassed. In one departure
from the pattern, a long-term veteran of the mental health system saw advance
directives as completely irrelevant in his own case, but did endorse them for
others as protection against abuse he had witnessed. A second exception,
occasionally voiced in training sessions, should also be mentioned: the stance
of people with so little trust in the system that the prospect of undertaking
the work of preparing a directive seemed no more than an elaborate joke.
Limitations of the study
Although the small sample size and interview time frame are limitations,
the exploratory nature of this study should be stressed. Within the limits of
experience to date, this group of informants proved willing and able to
think out loud about the whole process with researchers in
attendance, rehearsing anxieties, misgivings, hopes and their own peculiar
brands of riskbenefit accounting. Sufficient resonance across the group
was reached that we think it safe to say that the themes emerging in these
labour-intensive planning projects are worth pursuing with more rigorous and
protracted methods of investigation.
Interest v. follow-through
Our findings are congruent with other studies, cited earlier, that
documented high levels of interest in psychiatric advance directives among
people with a diagnosis of severe mental illness, their families and providers
(Amering et al, 1999;
Backlar et al, 2001; Swanson et al, 2003;
Srebnik et al, 2003).
We, too, found that most people easily understood the concept of advance
directives and were uninterested in using them to refuse all treatment
(Sherman, 1998;
Backlar et al, 2001;
Valletto et al,
2002). Given the well-documented obstacles to implementing advance
directives lack of information and support for staff, legal
uncertainties, want of ongoing assistance and administrative indifference
(Howe, 2000;
Srebnik & Brodoff, 2003) the low rates of completion of such directives are not surprising.
Discordance between interest and follow-through is not uncommon in studies of
preparatory planning: for example, only 16% of healthy, motivated relatives of
people with Alzheimers disease returned a self-addressed stamped
envelope to ratify an earlier willingness to participate in research
(Wendler et al,
2002).
Advance directives as projects
We found the space between expressed interest and formal execution to be a
patchwork of industry. Queried about their thinking and activity after the
training sessions, study participants talked about work: sometimes
inefficient, occasionally stalled, usually protracted and operating at
variable pace. Although a few were flummoxed by the scale of the project, most
were not only ready to engage in constructive thinking about their directives,
but also willing to take on more responsibility for treatment preparedness
than ever before. This meant substantial activity and personal risk. What
sustained the work and made the risks worth taking was the promise of a new
relationship with the mental health system, one built on collaboration and
respect for their own experience-based expertise. Accordingly, people were
careful to structure their directives so that professionals could respond
constructively.
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System receptivity |
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Psychiatric advance directives are best conceived as complex interventions that require lengthy development work if they are to stand a chance of success (Thomas, 2003). The development work includes not only patients, family members and clinicians, but also the system itself. A host of legal, procedural and logistical problems, well described in the literature on healthcare proxies (Slewchuk, 1998), remain to be addressed. Resolving them will require substantial investment of resources to effect the necessary changes in administrative infrastructure and professional culture, at a time when the moral economy of care appears to be heading in a number of contrary directions (Hopper, 2001). Advance directives hold great potential to engage consumers in a serious and balanced collaborative process, but without a serious systemic commitment this bold experiment may prove a cautionary tale instead.
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APPENDIX |
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Feasibility
Concerns about the logistics of advance directives, including legal status,
mechanics of use and the systems capacity to respond.
Experience
Experience with the mental health system - positive and negative - and
especially with coercion.
Anxiety
Fears raised with respect to drafting an advance directive thinking about
past, future, oneself as agent.
Intent
Changes the informant hopes to make through the vehicle of an advance
directive.
Unintended changes
Changes the informant fears might ensue because of an advance
directive.
Content
Actual content of an advance directive.
Action
Comments relating to deciding on or taking action, or barriers to action,
in drafting an advance directive.
Editorial
Expressed opinions, ideological statements.
Uncoded
Material not otherwise coded.
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Clinical Implications and Limitations |
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LIMITATIONS
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ACKNOWLEDGMENTS |
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Received for publication December 16, 2003. Revision received September 16, 2004. Accepted for publication September 29, 2004.