Embedding Advance Directives in Routine Care for Persons With Serious Mental Illness: Implementation Challenges
Abstract
For people with serious mental illness, research demonstrates the potential positive effects of having an advance directive with specific instructions for mental health care. The Commonwealth of Virginia has undertaken efforts to incorporate the completion of psychiatric advance directives into routine mental health services for individuals with serious mental illness. The inherent complexities of advance directives—a single legal tool for use by a heterogeneous array of consumers, providers, and organizations—have led to more barriers than had been anticipated. This article describes challenges encountered in the first three years of implementation efforts. Data are from feedback on early training attempts and experiences of staff at pilot sites and work groups convened for the implementation project. The authors describe a range of challenges, such as how to present a complete and clear message about the nature, purposes, and potential advantages of psychiatric advance directives to various audiences, in particular their use in recovery-oriented care; how to promote cross-system collaboration among potential users of these directives; and how to overcome resource constraints and sustain interest in the process. Virginia’s experience reinforces the importance of developing multifaceted implementation strategies, such as the creation of informational and training tools to spread implementation more effectively, the identification of “champions” or staff members who are invested in implementation, and the development of multiple approaches to facilitating completion of advance directives by consumers.
Advance directives for health care are witnessed written documents or oral statements that allow competent adults to declare their treatment preferences with regard to health care or to designate a proxy decision maker to act on their behalf should they be deemed incapable of making informed choices on their own. About two-thirds of states have enacted legislation specifically authorizing use of advance directives in mental health care, typically called psychiatric advance directives (1). A key feature differentiates psychiatric advance directives from other tools related to mental health crisis planning: psychiatric advance directives are legally binding on proxy decision makers and treating clinicians (2).
Psychiatric advance directives are potent tools both because of their extrinsic legal effect and because of their intrinsic effect on recovery-pertinent and clinical outcomes. Proponents of psychiatric advance directives contend that they have the potential to advance consumer empowerment and increase autonomy by facilitating collaborative, consumer-directed treatment planning—an argument that has been supported by research (3–5). Psychiatric advance directives may also empower consumer support systems (for example, family members) burdened with making difficult decisions by documenting consumer preferences for general medical or psychiatric care (3,6,7). In addition, many studies have examined the clinical usefulness of psychiatric advance directives and have demonstrated, for example, that they contain a variety of treatment-relevant information (8,9), that clinicians rate the vast majority as clinically useful (8), and that their use may improve therapeutic relationships by encouraging discussions between consumers and providers (10). Moreover, an experimental study demonstrated that consumers who had completed psychiatric advance directives were half as likely as consumers who had not to require coercive interventions over a two-year period (11).
The Commonwealth of Virginia has explicitly committed its mental health service system to adopting the recovery model and making recovery-oriented services widely available (12–14). Key stakeholders in Virginia collaborated to develop and enact innovative legislation on psychiatric advance directives (2007–2010) (15,16) and to promote widespread incorporation of these legal tools into routine mental health care (2010–2014). Virginia lawmakers specifically intended to integrate mental health, general medical, and end-of-life care into a single holistic advance directive. Therefore, advance directives with instructions for mental health care are often not called psychiatric advance directives in Virginia. (For the sake of clarity and convenience in this article, however, we use the term psychiatric advance directive.) [A description of Virginia’s advance care planning reform is included in an online supplement to this article.]
Virginia appears to be the first state to purposefully commit itself to systematically incorporating psychiatric advance directives into routine mental health care practice. Research about how to implement psychiatric advance directives is sparse and typically focuses on implementation at the level of the individual agency (17). Therefore, Virginia’s efforts have the potential to expand the understanding of implementation of psychiatric advance directives. We have all been directly involved in the implementation process. One author (RJB) was the chair of the commission that recommended and drafted the legislative changes. The others have made presentations about the legislative changes and psychiatric advance directives, drafted curricula, overseen data collection, organized collaborative workgroups, provided technical assistance, and more. Our aim in this article is to report experiential data from the first three years of Virginia’s implementation efforts. The data have been culled from feedback on early training attempts, the experiences of staff at pilot sites who met with us monthly, and the experiences of work groups convened for the implementation project. This information provides a qualitative picture of the statewide implementation effort.
Identifying and Overcoming Challenges and Impediments
To be successful, implementation efforts require more than education of stakeholders. They also require collaboration and coordination among community-based organizations, state and local mental health agencies, and peer-run and advocacy groups to overcome numerous cultural and organizational obstacles (18). In the following sections, we describe the main impediments encountered during implementation of psychiatric advance directives in Virginia.
The Complex Nature of an Advance Directive
One particular challenge with which we have struggled is how to present a complete but clear message about the nature, purposes, and potential advantages of psychiatric advance directives. What kind of document is an advance directive? Is it a health care tool or a legal instrument? Psychiatric advance directives are both, of course, and their dual nature creates intriguing challenges in regard to educating and engaging (or assisting others to educate and engage) individuals in all groups that may be expected to execute and apply them.
Our initial focus when presenting psychiatric advance directives was to emphasize the legal nature of these documents because it distinguishes them from other advance care planning tools. The legal nature of psychiatric advance directives also means that completing one can be cast as a single legal event with a certain amount of concreteness and definitiveness. However, this focus seemed to overshadow the recovery-oriented nature of psychiatric advance directives and their ties to a dynamic process of advance care planning.
As implementation efforts have matured, we have shifted the narrative toward a focus on the recovery process. The most immediately compelling message for individuals and providers—both of whom are deciding where to invest their limited resources—is that psychiatric advance directives are tools that serve larger efforts in regard to treatment engagement and crisis planning. Yet we still must communicate the formalities required so that resulting documents are legally valid and, therefore, maximally utilized.
System and Community Factors
Unauthorized practice of law.
Perhaps the greatest impediment to optimal implementation of psychiatric advance directives is the Virginia state bar’s ruling on the unauthorized practice of law (UPL). A formal opinion issued in 2005 reaffirmed the bar’s position that assisting a person to complete a legal document constitutes the practice of law, and we were advised by the bar ethics staff that advance directives are legal documents. It follows that in the absence of legislative action, only lawyers may assist in the facilitation of an advance directive (19). UPL is subject to a range of potential penalties, including civil action by the attorney general to enjoin the individuals or agencies or criminal action (20). Fortunately, the Virginia General Assembly was aware of the potential for UPL issues when it revised the Health Care Decisions Act (HCDA) in 1991 and specifically declared that “assistance in the completion and execution” of advance directives by “health care providers” does not constitute UPL (21). Although we have been able to take advantage of the exemption for health care providers, the UPL ruling disqualified a vital sector of implementation partners—peer-run and advocacy organizations—from facilitating the execution of advance directives.
Research indicates that peer acknowledgment and acceptance of new interventions serve as a powerful endorsement of those services (18,22), yet Virginia has not been able to fully capitalize on this. Several peer and advocacy agencies in Virginia, such as the Virginia Organization of Consumers Asserting Leadership and the National Alliance on Mental Illness–Virginia, strongly supported the HCDA amendments authorizing psychiatric advance directives and began preparing to provide education and facilitation. When they became aware of the UPL ruling, however, they reasonably retreated from providing individuals with active assistance in completion of a psychiatric advance directive because of concerns about liability.
Outreach and cross-system collaboration.
A lack of collaboration across systems has proven to be another system-level barrier that impedes the adoption of psychiatric advance directives. The implementation of psychiatric advance directives spans several different groups. For example, emergency department staff, law enforcement agencies, and peer-run organizations may have an interest in seeing mental health care consumers take advantage of such a potentially effective tool. Furthermore, the UPL issue means that attorneys may be involved at some stage. The involvement of all these groups points to the need for early and frequent outreach to promote collaboration across providers inside and outside the mental health services system. However, Virginia has struggled to form collaborations because of the diversity of agency aims, resource availability, and other constraints.
Limited treatment resources in a crisis.
Connecting an individual with crisis services in a way that is informed by the person’s psychiatric advance directive has been difficult because of the inherent complexities of the fragmented health and mental health care systems. The reality of limited inpatient services means that provisions expressing preferences regarding particular hospitals are probably not feasible in many cases. Moreover, admission to a psychiatric hospital via a psychiatric advance directive is functionally a voluntary admission (23). However, involuntary beds are sometimes easier to locate, and public financing of hospitalization is skewed toward involuntary admissions, which leaves payment for admission via psychiatric advance directives uncertain. Access to outpatient psychiatric evaluation in a crisis is scarce in many parts of the state (24).
Electronic medical recordkeeping.
A final system-level obstacle is the slow adoption of what was assumed to be a plausible mechanism for making psychiatric advance directives accessible—electronic medical records (EMRs). Public outpatient agencies and hospitals are in various stages of implementing EMRs, and they are using different EMR programs, which makes it very unlikely that psychiatric advance directives will be seamlessly available across provider sites or regions, even if they are entered into an EMR. Among the legislative changes adopted in 2009 was a mandate to create an electronic registry for advance directives in Virginia (25). However, use of the registry appears to be low because of poor accessibility and lack of widespread knowledge about it. As a result, stakeholders have developed “low-tech” stopgap measures, such as wallet-sized alert cards, and they encourage consumers to provide physical copies to local hospitals and mental health providers.
Organizational Factors
Incorporation into agency culture.
Virginia’s public mental health system is centralized under the Department of Behavioral Health and Developmental Services (DBHDS), which oversees the state psychiatric hospitals and the public outpatient mental health agencies, called community services boards (CSBs). The system is also decentralized, however, in that DBHDS has relatively little direct authority over the CSBs. CSBs are controlled by local governments and are quite diverse in their established attitudes, practices, and resources. DBHDS contracts with the CSBs annually, but there is no central governing body that can prescribe intervention-specific cross-site policies and procedures. The result of this diversity is that, from the outset, CSBs occupy various positions along the “continuum of readiness” to adopt psychiatric advance directives, which need to be addressed on an individual basis.
Changing or shifting agency culture to incorporate a new intervention or perspective is problematic in most cases (26). Psychiatric advance directives fit nicely with the recovery model, but without clear and persistent emphasis on this message throughout the agency, promoting and facilitating use of psychiatric advance directives will likely be viewed by an overworked staff as just another uncompensated task.
Identifying “champions.”
Another key lesson learned regarding integration of psychiatric advance directives into an agency is the need for a “champion”—a staff member who is invested in implementation of psychiatric advance directives and can commit substantial effort toward coordinating implementation in his or her agency. Research has noted the utility of having a champion within an organization because that person can serve to maintain the agency’s focus on and commitment to a new intervention (18). In the case of psychiatric advance directives in Virginia, having a champion at each pilot site provided our team with a consistent on-site contact who knew the agency’s structure and was able to help adapt implementation to the agency. The benefits of having a champion are counterbalanced, however, by the reality that centering the majority of efforts on one person can leave implementation in a tentative position. If psychiatric advance directives are not sufficiently rooted and the champion leaves the agency, the seedling efforts will be lost.
Resource constraints.
The fact that the first three years of Virginia’s psychiatric advance directive implementation project have coincided with the nationwide recession has also proved to be a major barrier. As is widely acknowledged, changes in health care insurance and reimbursement practices over the past several years have led general medical and mental health care providers to closely consider what services are “billable” and, therefore, economical to offer. The past few years have also seen substantial erosion in support for public health care services. These general trends also have had an impact on the implementation of advance directives, because CSBs were not able to underwrite services to facilitate completion of directives by consumers or commit as much effort as they might otherwise have done.
Individual Factors
Sustained interest in the process.
The facilitation process can be long and difficult. In addition to the difficulty of explaining the material to consumers, facilitation sessions can be emotionally taxing because they require thinking about past experiences that may have been unpleasant and contemplating future mental health crises. Moreover, working through the forms and all the areas that they cover requires cognitive and attentional skills that may be difficult for some consumers, in many cases because of the effects of medications. Some consumers may be able to complete the facilitation session in a relatively brief period (about an hour), whereas for others the facilitation session may need to be broken up over multiple meetings. Additional factors, such as variable access to transportation or busy work schedules, can make follow-through on all steps in the process difficult for consumers. Experience has demonstrated that “no shows” for facilitation appointments for psychiatric advance directives are not uncommon and that agencies need to develop proactive strategies for helping consumers see the process through.
Difficult material.
Psychiatric advance directives present difficult material because of their legal nature. There is no single form that must be used in Virginia, and thus consumers have options from which to choose. Most psychiatric forms, however, have been drafted by attorneys. They thus include terms that ensure their legality but that make them difficult for the average layperson to understand. For example, the form drafted for use in the implementation project, which includes sections for all types of health care and has been refined to make it easier to use, is ten pages long with extensive explanatory text.
Without having a good understanding of the psychiatric advance directive’s purpose and worth, consumers are less likely to follow through in completing one, and if they do complete one, they are less likely to keep it updated or make sure that it is referenced when they are in crisis. A final problem regarding material content is the fact that current options for consumers who are illiterate or are not fluent in English are limited, raising questions about consent and comprehension.
Communicating with providers.
Ideally, a consumer communicates with his or her providers to some degree during the process of completing a psychiatric advance directive, but many factors may keep the consumer from doing so. Moreover, after creating a psychiatric advance directive, it is a consumer’s responsibility to inform providers about the psychiatric advance directive—providers have a duty to follow it only if they are aware of it. The current lack of a cross-system infrastructure for storing and accessing psychiatric advance directives also places a burden on consumers to provide copies of their directives, so that they are accessible during crises. These additional burdens on consumers present another barrier to which implementing agencies must attend.
Communicating with agents.
The effectiveness of psychiatric advance directives depends on a consumer’s ability and willingness to communicate with the agent designated in the directive to make health care decisions on the consumer’s behalf. In Virginia, agents do not need to sign a psychiatric advance directive for it to be valid. Therefore, a consumer could appoint an agent without ever discussing the issue with him or her. Even in cases that are not extreme, however, communicating with agents can still present problems. A consumer should engage in a thoughtful initial conversation with his or her agent about the details of the psychiatric advance directive and keep the agent informed of changes in the directive. However, such discussions most likely occur outside of facilitation sessions, and it is thus difficult to ensure that these vital steps are taken.
Future Efforts to Overcome Barriers
The issues faced during the initial phase of implementation led to the refinement of several strategies undertaken by implementation sites and highlighted areas that required more attention during the next wave of implementation efforts. One key outcome is the creation of necessary informational and training tools to spread implementation more effectively and consistently. In particular, an implementation manual and training curricula have been developed (27). The manual is framed in functional terms and addresses the three broad intra-agency tiers of staff involvement: administration, direct supervision and management, and individual service provider. The curriculum consists of basic orientation training, which provides education to individuals interested in executing a psychiatric advance directive, and substantially more intensive training for peers and providers who are interested in facilitating completion of psychiatric advance directives. Both tools are informed by lessons learned from the implementation efforts and are designed to help other agencies streamline their implementation process.
A second key feature of the next wave of implementation is the appointment of a designated individual whose primary responsibility is coordinating implementation efforts across agencies and systems. The need for such an “implementation coordinator” became apparent because psychiatric advance directives span agencies and systems that do not necessarily have a natural networking infrastructure in place. The enthusiasm for psychiatric advance directives is widespread, but it has become clear that their boundary-spanning nature does not naturally “grow” a concomitant infrastructure for their access and use. The implementation coordinator will proactively reach out to CSBs and other agencies to encourage implementation and offer valuable technical assistance and consultation.
Additional efforts not yet undertaken but on the horizon involve developing a widely accessible repository for psychiatric advance directives and determining what partnerships are most feasible for bolstering the systemwide implementation of psychiatric advance directives (for example, local outpatient provider, local law enforcement, and local acute inpatient provider). Implementation efforts must include working with emergency department physicians to develop policies and procedures that encourage accessing and utilizing psychiatric advance directives in crisis situations.
Conclusions
Virginia’s three-year experience in promoting the use of advance directives in mental health care reinforces the importance of developing multifaceted implementation strategies while remaining nimble enough to respond to unforeseen challenges. Some challenges are characteristic of efforts to change the culture and practice of any organization—identifying and supporting champions, establishing incentives, developing practicable procedures, and making services accessible and desirable—whereas other challenges arise from ambitious statewide implementation goals. These challenges may appear daunting, but we remain optimistic that they can be overcome.
Acknowledgments
The research and implementation activities described in this article were supported by grants from Robert Wood Johnson Foundation Public Health Law Research Program (2009–2010; grant 67241); the John D. and Catherine T. MacArthur Foundation Research Network on Mandated Community Treatment (2011; grant 05-85323-000HCD); the Virginia Department of Behavioral Health and Developmental Services, in cooperation with the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration; the David L. Bazelon Center for Mental Health (2010–2013; contract 720C-04276-10R00); and the National Association of State Mental Health Program Directors (2012–2014; contract 720C-04358-13M00). In addition, the University of Virginia Law School Foundation provided financial support for this work. The authors acknowledge the important contributions of Jeffrey Swanson, Ph.D., and John Oliver, Esq., their partners in designing and implementing the advance directives project in Virginia; Jim Martinez and Rhonda Thissen, M.S.W., from the Virginia Department of Behavioral Health and Developmental Services; and Jessica Kostelnik, Ph.D.
The authors report no financial relationships with commercial interests.
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Cover: In the Loge, by Mary Cassatt, circa 1879. Pastel and metallic paint on canvas prepared with a pastel ground. Gift of Mrs. Sargent McKean, 1950 (1950-52-1), the Philadelphia Museum of Art. Photo credit: the Philadelphia Museum of Art/Art Resources, New York.
History
Published in print: January 01, 2015
Published online: 2 January 2015
Authors
Funding Information
John D. and Catherine T. MacArthur Foundation10.13039/100000870: 05-85323-000HCD
Substance Abuse and Mental Health Services Administration10.13039/100000058: 720C-04276-10R00
Robert Wood Johnson Foundation10.13039/100000867: 67241
National Association of State Mental Health Program Directors: 720C-04358-13M00
University of Virginia Law School Foundation:
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