Using a Hypothetical Scenario to Inform Psychiatric Advance Directives

Participants in this study were clients of the Massachusetts Department of Mental Health receiving services from one of five contracted community mental health agencies. Participant recruitment began in November 2000 and ended in July 2001. The first 150 eligible volunteers were included in this study. All participants met state criteria for a serious and persistent mental illness. Participants were 18 years of age or older, able to communicate in English, and provided written informed consent. Two institutional review boards approved the study protocol and the informed consent document. Written informed consent was obtained from participants after they received a complete description of the study. A previous publication provides a detailed description of the sample and data collection methods ( 15 ).

The HCPQ is divided into five parts and evaluates participants' attitudes and preferences for treatment-specific choices and assesses basic health care values. HCPQ topic areas include health status, assessed with the 12-item Short Form Physical and Mental Health Summary Scales (SF-12) ( 17, 18 ); advance care planning; treatment preferences concerning scenarios about medical and psychiatric state; beliefs, values, and concerns about the end of life; and interview feedback and follow-up, including questions regarding comfort and stress associated with the interview and talking about the end of life ( 15, 16 ). Participants' health care values and beliefs were obtained by agency clinicians who were trained to administer the HCPQ.

The HCPQ was supplemented by an addendum where clinicians subjectively evaluated participants' understanding of the questions, obvious comfort or distress during the interview, apparent cognitive impairment or mental status abnormalities (each rated on a 5-point scale), and expressions of a negative reaction to any question.

The hypothetical psychiatric health state scenario describes the progressive deterioration of a psychiatrically ill person and asks about providing medications, emergency interventions (restraint or seclusion), and electroconvulsive therapy (ECT). Clinician interviewers first read the scenario with an imaginary patient as the subject and then asked the participant to select the most appropriate treatment choice for this person. Participants were then asked to choose among the same treatment options for himself or herself. Where applicable, scenarios included elements pertaining to judicial review, in accordance with Massachusetts legal requirements. Results from the hypothetical medical health state scenarios are described in previous work ( 16 ).

Psychiatric treatment preferences were examined through cross-tabulation analyses. Correlations were identified between treatment preferences and having a proxy decision maker; medication noncompliance; age; physical and mental well-being; psychiatric diagnosis; cognitive impairment; understanding of questions; and comfort, stress, and negative reactions to the interview.

The findings from this study suggest that consumers are able to identify their preferences for psychiatric advance directives by responding to hypothetical psychiatric scenarios. Only a small number of participants experienced significant distress during the administration of the HCPQ, and most participants had a good understanding of the questions and concepts. Participants provided similar, though somewhat lower, approval of involuntary psychiatric treatments for themselves compared with an imaginary patient. Of note, involuntary treatments, such as the provision of medications, medication injection, and seclusion or restraint, were supported by over two-thirds of participants. In contrast, use of ECT as a "quick and effective treatment" was supported by less than one-third of participants.

These findings supplement our previous work, which found that the HCPQ provides a feasible, acceptable, and useful standardized approach to medical advance care planning for persons with serious mental illness ( 15 ). Similar to our previous analyses that conclude that persons with serious mental illness were able to designate treatment preferences in response to end-of-life health scenarios ( 16 ), this study shows that the same is true for psychiatric health scenarios.

Mental health providers, family members, and consumers support the use of psychiatric advance directives as an important means of strengthening communication, avoiding unwanted treatment, obtaining needed treatment, and empowering consumers ( 7, 13 ). One-half to two-thirds of persons with serious mental illness consistently express interest in completing psychiatric advance directives ( 7, 13 ), and one recent study found that 61% completed psychiatric advance directives when this process was facilitated through a structured session with a manual ( 20 ).

A significant barrier that limits the use of advance directives among individuals with serious mental illness is difficulty obtaining appropriate supports to complete a psychiatric advance directive ( 7 ). One recent study found that 44% of consumers needed nontechnical support to complete psychiatric advance directives (terminology paraphrasing, discussions of the purpose, when they can be activated, role of surrogate decision makers) and 35% wanted help from a case manager ( 4 ). In contrast to software-produced advance directives, the HCPQ is a semistructured interview that provides support to consumers while it is being completed and allows for alliance building between the clinician and the consumer.

Clinicians can use the HCPQ "imaginary person" methodology to support consumers in designating advance directives. The initial presentation of health state scenarios through the "imaginary person" point of view allows the consumer to think of the situation in the third person, as a story, and ask questions about it. This process facilitates active discussion of treatment preferences while ensuring that individuals have the opportunity to request clarification and enhance their understanding of treatment choices. It can reduce consumer anxiety, improve understanding, and set the stage for thoughtful responses. This process also can increase clinician sensitivity to proposed treatments and their impact on a consumer. Once completed, documented preferences can guide health care providers, proxies, and court-appointed guardians in choosing treatments when the consumer may be unable to either make or communicate his or her choices.

Our findings regarding treatment preferences are similar to recent reports suggesting that consumers prefer methods for deescalating crises over restraint and ECT ( 3 ). Most participants supported the use of involuntary treatments in an emergency situation (medications, 70%; medication injection, 76%; seclusion and restraint, 73%). Participants were least likely to support the use of ECT (32%), which aligns with findings by Srebnik and colleagues ( 3 ) and Backlar and colleagues ( 21 ), who found that 72% and 57% of consumers, respectively, refused ECT. Of note, participants in our study were more likely to support the use of ECT when their life was in danger (60%).

As noted in other studies, several characteristics were associated with psychiatric treatment preferences. The provision of medications was associated with greater understanding, compliance with medications, and age. Sixty-five percent of participants identified one or more medications that they did not want to receive. This is slightly lower than the 71% that has been reported elsewhere in the literature ( 20 ). Preferences about specific medications that one would never want to receive were associated with younger age and medication nonadherence.

There are several limitations that should be considered in the interpretation of this data. As mentioned in previous studies using this data set ( 15 ), the study sample was drawn from one urban and suburban area, was not culturally or racially diverse, and used a purposive sampling method of self-selected participants. In addition, although the study sample consisted of individuals receiving mental health treatment services, the extent of participants' experience or knowledge with each health issue or procedure is unknown. Health care preferences may be shaped by poorly formed understanding of treatment procedures; however, this concern is broadly applicable to general health care decision making, as well as for health care proxies who speak on behalf of others. Furthermore, stigma and misperception may influence decisions about some psychiatric treatment choices. For example, the low acceptance of ECT, which aligns with findings from other studies of persons with serious mental illness ( 3, 21 ), may indicate that persons receiving mental health treatment experience the same distrust and misperception of ECT that is held by the general population ( 22, 23 ).

Future studies may wish to examine the utility of the HCPQ among members of ethnic minority groups, other cultures, or individuals in rural settings. Future studies also may wish to examine the utility of the HCPQ in enhancing the therapeutic alliance between consumers and clinicians and in ensuring that consumers receive preferred interventions during periods of compromised decision making.

In summary, our study illustrates that persons with serious mental illness may benefit from the use of a semistructured interview technique for eliciting preferences to be included in a psychiatric advance directive. The use of a hypothetical psychiatric scenario was intended to prepare persons with serious mental illness to identify treatment preferences in a nonintimidating manner. This approach was associated with minimal distress, high rates of understanding, and the elicitation of treatment preferences that are similar to those reported by others. This study complements existing data ( 15, 16 ) and supports the use of the HCPQ as a means for eliciting medical and psychiatric treatment preferences for advance directives.

This study was funded by grant 35497 from the Robert Wood Johnson Foundation through the Promoting Excellence in End-of-Life Care Program. We are grateful to Steven Carreras, Ph.D., Anna Rubley, L.I.C.S.W., Meredith Hanrahan-Boshes, R.N., and Sally Neylan Okunfor, B.S.N., M.M.H.S., for their assistance as project directors. We are also grateful to Keith Miles, M.P.A., and Stephen Bartels, M.D., M.S., for assistance in developing the evaluation program. The HCPQ is further described at www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3825.

The authors report no competing interests.

Ms. Van Citters is affiliated with the Dartmouth Psychiatric Research Center, Dartmouth Medical School, Lebanon, NH. Dr. Naidoo is with the Department of Psychiatry, Massachusetts General Hospital, and is Instructor in Psychiatry, Harvard Medical School, Boston. Dr. Foti is with the Department of Psychiatry, University of Massachusetts Medical School, Worcester. Send correspondence to Dr. Foti at the Department of Psychiatry, University of Massachusetts Medical School, 55 Lake Ave. N., Worcester, MA 01655 (e-mail: [email protected]).