Psychiatric advance directives

Journal of the American Psychiatric Nurses Association

Psychiatric Advance Directives Paula K. Vuckovich, APRN, BC, PhD Psychiatric advance directives (PADs) have been legally defined in 12 states and implemented in all but 9. PADs may prevent unwanted treatment and identify preferred treatment. They may also allow mentally ill persons to exercise autonomous control over care even during periods of illness-induced incompetence. PADs can be beneficial for intermittently psychotic patients who have a trusted health care provider and a surrogate decision maker. Because of the growing interest in the use of PADs, nurses should be informed about the intended purposes, benefits, and drawbacks of them. (J Am Psychiatr Nurses Assoc [2003]. 9, 55-9.)

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sychiatric advance directives (PADs) are legal documents directing treating professionals to provide psychiatric care in accordance with an individual’s preferences and specific needs (National Mental Health Association [NMHA], n.d.). PADs can be implemented when a mentally ill individual is incapable of making treatment decisions, and they can provide an alternative to involuntary treatment (NMHA; Stavis, 1999; Swanson, Tepper, Backlar, & Swartz, 2000). Prompted by concern that the majority of seriously and persistently mentally ill (SPMI) persons in the United States are receiving inadequate treatment, mental health advocacy groups are pursuing various legal approaches to ensuring quality care. For example, one legislative effort reduces restrictions on involuntary hospitalization and establishes the terms for involuntary outpatient commitment (National Alliance for the Mentally Ill, 1999, 2001). Another legal effort, favored by those who object to the coercive nature of involuntary treatment, promotes the use of PADs (NMHA, n.d.). This article presents a discussion of PADs, considers the advantages and disadvantages of PADs, and outlines the role of psychiatric nurses in their implementation. OVERVIEW OF PADS PADs are a specific form of the advance directives required by the Patient Self Determination Act of 1990 (Srebnik & La Fond, 1999; Swanson et al., 2000). Individuals in all but nine states (Table 1) who are currently competent but anticipate that at some time mental illness may render them

Paula K. Vuckovich, APRN, BC, PhD, is a lecturer at the School of Nursing, California State University, in Los Angeles, California. Reprint requests: Paula K. Vuckovich, APRN, BC, PhD, 5996 Birdie Dr., La Verne, CA 91750. Copyright © 2003 by the American Psychiatric Nurses Association. 1078-3903/2003/$30.00 ⫹ 0 doi:10.1016/S1078-3903(03)00052-1

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incapacitated can deploy PADs and direct future treatment. Six states do not allow any use for mental health treatment; three states prohibit their use for psychiatric hospitalization and electroconvulsive therapy (ECT). New York (New York State Office of Mental Health, 2000) and Maryland (NMHA, n.d.) require that patients in the public mental health systems be informed about and, if requested, given assistance to develop advance directives. Twelve states (Table 2) have a separate form of advance directive for psychiatric care (Stavis, 1999).

As long as the principal’s expressed wishes are not inconsistent with accepted medical practice, given the available resources, health care providers are legally expected to comply. Depending on state law, a PAD can be an instructional directive, a durable power of attorney, or a combination of both. An instructional directive is an expression of the person’s wishes and desires as to what treatment should be given or not given in the event he or she loses the capacity to make health care decisions. A durable power of attorney is a legal document that permits an individual, or principal, to delegate decision making authority to an agent, that is, someone who is familiar with his/her views. The durable power of attorney gives specific direction to the agent to act when the principal’s own decision-making authority has been suspended. The agent then has the legal responsibility for ensuring execution of the principal’s wishes and/or deciding in the absence of explicit knowledge of the principal’s wishes (Gallagher, 1998; NMHA, n.d.). Uses of PADs PADs may be used for the following purposes: (a) to specify refusal or consent for specific medications or treatments (e.g., ECT) and/or admission to psychiatric facilities or outpatient services; (b) to present the principal’s preferAPNA Web site: www.apna.org 55

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Table 1. States in Which PADs are Not Allowed or Limited* Alabama Arkansas California (may not be used for psychiatric hospitalization or ECT) Indiana Louisiana Montana Pennsylvania Wisconsin (may not be used for psychiatric hospitalization or ECT) Wyoming (may not be used for psychiatric hospitalization or ECT) ECT ⫽ electroconvulsive therapy. Note. *Most current data available. Adapted from “The nexum: A modest proposal for self-guardianship by contract: A system of advance directives and surrogate committees-at-large for the intermittently mentally ill,” by P.F. Stavis, 1999, Journal of Comtemporary Health Law and Policy, 16, p. 88-95.

Table 2. States With Specific PAD Laws* Alaska Hawaii Idaho Illinois Maine Minnesota North Carolina Oklahoma Oregon South Dakota Texas Utah Note. *Most current data available. Adapted from “The nexum: A modest proposal for self-guardianship by contract: A system of advance directives and surrogate committees-at-large for the intermittently mentally ill,” by P.F. Stavis, 1999, Journal of Comtemporary Health Law and Policy, 16, p. 88-95.

ences for mental health providers, nonmedical therapies, alternatives to hospitalization, and/or alternatives in times of crisis; (c) to detail previously used ineffective or harmful interventions, and (d) to stipulate who to notify in a crisis, who may or may not have access to confidential information, and who should care for children or pets. As long as the principal’s expressed wishes are not inconsistent with accepted medical practice, given the available resources, health care providers are legally expected to comply. An instructional directive may be used to inform the treating mental health professional of the principal’s preferences even if state law does not have such a provision. It is the responsibility of the principal to provide copies of the PAD to treating professionals, the selected agent, and others. Execution and Revocation of PADs Advance directives for health care only come into use when an individual has lost the capacity to make autonomous decisions. In most states PADs are not specifically 56 APNA Web site: www.apna.org

authorized but allowed under general laws, and directives may be executed and revoked at will as long as the person is capable of expressing his or her intentions. In states with PAD laws, both execution and revocation require that the principal be determined competent to make such decisions. In such states PADs can be overruled only under specific circumstances. For example, refusal to be hospitalized can be overruled when the individual meets involuntary commitment criteria (Stavis, 1999). Accordingly, there is an expectation that PADs will be used to avert involuntary outpatient commitment more often than involuntary inpatient hospitalization (Swanson et al., 2000) LEGAL AND ETHICAL ISSUES A primary objection to involuntary treatment is that it deprives the patient of autonomy and infringes on the legal right of a competent person to self-determination and informed consent (Appelbaum, 1994; Gutheil & Applebaum, 2000; Szasz, 1982). Both the Code of Ethics (American Nurses Association, 2001) and Standards of PsychiatricMental Health Nursing Practice (American Nurses Association, 2000) require psychiatric nurses to promote patient autonomy to the extent possible. Although there is general agreement that severe psychosis renders a person incompetent and incapable of self-determination (Schopp, 2001), most serious mental illnesses are characterized by intermittent rather than constant psychosis (Stavis, 1999). Theoretically, PADs can preserve the autonomy and self-determination of the mentally ill to make treatment decisions when not acutely psychotic. Szasz (1982) initially proposed using “psychiatric wills” to refuse all forms of psychiatric treatment. Therefore there is concern that PADs will be used by the SPMI patients to refuse treatment altogether. Other groups, such as the National Alliance for the Mentally Ill (Honberg, n.d.), advocate the use of PADs in directing treatment at the onset of illness in the hope that involuntary hospitalization can be avoided. Instructional directives delineating refusal of specific unwanted treatments (e.g., a particular medication) seek to preserve autonomy and facilitate voluntary consent to treatment. However, there are ethical concerns about how much autonomy is possible with an irrevocable PAD that consents to future treatment.* Involuntary treatment and PADs are based on the ethical principle of beneficence. Parens patriae decisions to treat the mentally ill are justified by the belief that the treatment will contribute to the patient’s well being and that the state has an obligation to act to preserve the interests of those *Such consents are referred to as “Ulysses contracts” in reference to the legend that Ulysses ordered his crew to bind him to a mast and not to release him no matter what in order that he might listen to the songs of the sirens who lured men to their doom.

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Journal of the American Psychiatric Nurses Association

unable to care for themselves (Gallagher, 1998). Because involuntary treatment is seen as a breech of personal liberty and freedom, case law has generally ruled that only danger to the self or others is sufficient cause to deprive a person of liberty (Schopp, 2001). Significantly, involuntary hospitalization on the grounds of dangerousness deprives the individual of liberty, but the right to informed consent remains intact. Only a determination of incapacity enables a facility to treat the patient without consent. A capacity hearing must be held before a refusing patient can receive medication unless there is an emergency (Gutheil & Appelbaum, 2000). PADs consenting to medication in advance could minimize the delays and need for legal procedures. It might be argued that a formal capacity hearing prior to administering medication to a refusing patient provides more assurance of justice and protection of autonomy than honoring a PAD that the principal wishes to revoke. However, determination of incapacity is also legally required to prevent revocation of a PAD. If formal procedure were more protective of autonomy than a physician’s determination of incapacity, one would expect that the patient’s wishes would often prevail in such hearings. However, the patient’s medication refusal is overruled in the majority of capacity hearings (Gutheil & Appelbaum, 2000). Gallagher (1998) argued, “To the extent that substantive law grants psychiatric patients the right to make choices about their treatment, advance directives offer a viable method of ensuring that those choices are known and respected by providers”(p. 783). The NMHA “Issue Summary” characterizes case law this way, “Although most of the advance directives statutes are not specific to mental health case law, case law suggests they are applicable unless stated otherwise” (NMHA, n.d., p. 5). BENEFITS AND DISADVANTAGES OF PADS Benefits Perhaps the most important benefit of a PAD is the establishment of a working therapeutic alliance that includes the patient, health care provider, and family or other designated agent. Ideally, a PAD is formulated within a clinical treatment situation with all individuals concerned actively participating. In the process of identifying recurrent patterns of crisis or relapse and treatments that are helpful, ineffective, or harmful, there is the potential for improved care even if the advance directive is never used (Swanson et al., 2000).

Ideally, a PAD is formulated within a clinical treatment situation with all individuals concerned actively participating. When a psychiatric crisis occurs and the patient is seen by an unfamiliar health care provider, PADs can be useful in eliminating trials of ineffective treatments which may delay effective treatment (Backlar, 1997). They can also prevent costly, time consuming, and potentially dangerous treatment April 2003

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errors. Patient advocacy groups encourage the use of PADs to reduce the likelihood of patients being involuntarily and forcibly medicated, restrained, and hospitalized (Bazelon Center for Mental Health Law, 1998). If the directive has been constructed so that the agent is empowered to act as soon as predictable signs of the illness worsening are detected (and is not forced to wait until the patient becomes seriously ill or “dangerous”), effective treatment may be instituted early in an exacerbation of illness, thereby avoiding involuntary procedures, extensive reviews, coercive measures, and unnecessary hospitalizations. If treatment in crisis is provided by a known and trusted health care provider, the provider can point out to the patient that he or she has agreed to what is being done and eliminate some of the resistance that comes from the sense of being coerced or feeling unheard. When an unfamiliar provider is encountered, the existence of a directive that specifies the patient’s preferences may permit the patient a measure of control. Susman (1998) found that patients who resist treatment respond more favorably to staff decisions perceived as “fair” and that they reacted better when they felt they had had a “voice” in the decision-making. Resistance to treatment is often a result of distrust steeped in prior experiences of coercion. PADs can serve the multiple functions, such as maintaining autonomy by formalizing the patient’s “voice” in the decision-making, encouraging early initiation of treatment, and avoiding legal proceedings and treatment refusal. They can also eliminate some of the family dissension over when and how to access treatment because decisions have already been agreed upon. Disadvantages Proponents see the only drawback to a properly negotiated PAD is that it might prohibit treatment options not previously anticipated (Swanson et al., 2000). Although proponents envision a scenario in which all parties negotiate in concert and the PAD is used to further the “best interests” of the principal, opponents see a different picture. There is concern that PADs could be used to prevent treatment of an involuntary patient indefinitely, returning state hospitals to the holding facilities of the past (Miller, 1998). In addition, because providers are prohibited by law from being agents or even witnesses to PADs, it would be possible that a PAD could be developed by an individual and his or her lawyer with no input from a clinician. Such a PAD might bind the health care provider to treatment that does not include the preferable options (Howe, 2000). Another concern is that the agent could be guided by his or her own wishes and concerns rather than the principal’s. For example, a family member, serving as an agent but also personally affected by a principal’s psychotic behavior, might be more intent on ending the disturbing behavior than respecting the principal’s desire to be medication free or not receiving a certain treatment. If execution of a directive reflecting the provider’s or family’s requirements is used as APNA Web site: www.apna.org 57

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a condition of discharge, the coercion involved could undermine any protection of autonomy a PAD might provide (Swanson et al., 2000). Proponents acknowledge these possibilities but suggest that these situations occur in the absence of PADs as well (Williams, 1999). BARRIERS TO EFFECTIVE USE PADs are legal in most states but are not widely used. Some difficulties with implementing PADs are similar to those encountered with medical advance directives (Backlar, 1997; Srebnik & La Fond, 1999). Other problems are particular to the realities of psychiatric illness (Howe, 2000; Williams, 1999). Although the law requires every person admitted to a health care institution to be informed of advance directives and every health care provider educated on their use, few individuals have the discussions with families and/or health care providers about their health care related wishes. In evaluating projects to promote use of advance directives by the mentally ill, it was estimated that less than 2% of participating mental health consumers formulated and executed a PAD (Srebnik & La Fond, 1999). Even when discussions have taken place, wishes are often ignored (The study to understand prognoses and preferences for outcomes and risks of treatments [SUPPORT] Principal Investigators, 1995) Multiple barriers exist related to developing and implementing PADs. The SPMI patient most in need of such a directive must first reach a state of remission sufficient to establish competency for informed consent. Some of these individuals may never be willing or legally able to participate fully in treatment decisions (Swanson et al., 2000). Capacity to consent may be challenged if the PAD is in conflict with what the current treating clinician believes is in the patient’s self interest. Patients and families are not always given information about PADs and may be unaware of how to access the forms necessary for use in a particular state. Time is required for an in depth discussion with the patient, the family, the agent, and the psychiatric care provider to learn about the reasonable options and reach a workable agreement. Another challenge involves the compensation to health care providers for the necessarily lengthy session involved in determining capacity and ensuring that the PAD is executed with appropriately informed consent (Backlar, 1997). Even if the resources are found for proper execution of a PAD, the treatment providers must be aware of the existence of the PAD and be willing to implement it. Pragmatically, getting the forms signed, notarized, and copied and then distributing the PAD to the general health care provider, the mental health provider, the individual designated as agent, family members, and psychiatric treatment centers can be daunting (Swanson et al., 2000). The aforementioned activities are challenging tasks for someone with stable mental health. In the absence of assistance it is unlikely that a 58 APNA Web site: www.apna.org

patient with a SPMI would be able to execute an advance directive.

If a PAD is available, the treatment team must be committed to respecting the patient’s wishes contained in it. Provisions in many state laws allow that directives can be overridden if a provider finds that he or she is not in accordance with accepted medical practice and/or the patient meets the criteria for involuntary treatment (Stavis, 1999). Srebnik and La Fond (1999) pointed out that medical advance directives are only honored 20% to 50% of the time. If a PAD is available, the treatment team must be committed to respecting the patient’s wishes contained in it. An articulate agent with the ability to effectively advocate for the patient is critical. Most health care professionals are not well informed about PADs, and this may require the agent to educate them. PADs are not the answer to under-funded mental health care systems. PADs can not force insurance companies or states to provide expensive preferred alternatives to government hospitals, nor can they authorize payment for nonformulary medications. NURSING IMPLICATIONS Psychiatric nurses can be instrumental in making PADs more widely available and in ensuring that they are honored. Ulrich (1999) outlined the nurses’ role in informing the patient about the options made available by the PSDA and in communicating to the treating physician the patient’s concerns and preferences. He viewed nurses as facilitating communication between the patient and the physician. When the psychiatric nurse is the primary mental health provider or a case manager for a mentally ill patient, the nurse can initiate discussions about PADs, assist patients in their formulation, inform other providers of their existence, and facilitate their implementation by members of the treatment team. In all of these roles psychiatric nurses are required by the professional standards (American Nurses Association, 2000) to do their utmost to ensure appropriate involvement of significant others in patients’ care. Treatment decisions involving mental health care often do not take into account the larger context of the individual’s life in family or community. Nurses can encourage a patient to invite family members or significant others to participate in treatment decision-making and educate families and patients about PADs. Part of psychiatric nursing’s obligation to the community includes actively lobbying for those things that improve mental health care (American Nurses Association, 2000). The first priority is sufficient funding for mental health care. No law regarding mental health treatment is of any use Vol. 9, No. 2

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without adequate funds allocated to implement effective treatment. With that understood, it would also be reasonable for psychiatric nurses to actively advocate for statutes authorizing PADs where none exist and to advocate for the resources required to effectively implement PADs in states in which they are currently legal. Nurses could also be active in research regarding use and effectiveness of PADs. Whether PADs can live up to their potential will not be known without programs to implement them and evaluation of the clinical outcomes.

REFERENCES American Nurses Association. (2000). A statement on psychiatric-mental health clinical nursing practice and standards of psychiatric-mental health nursing practice. Washington, DC: Author. American Nurses Association. (2001). Code of ethics for nurses. Washington, DC: Author. Appelbaum, P.S. (1994). Almost a revolution: Mental health law and the limits of change. New York: Oxford University Press. Backlar, P. (1997). Ethics in community mental health care: Anticipatory planning for psychiatric treatment is not quite the same as planning for end-of life care. Community Mental Health Journal, 33, 261-268. Bazelon Center for Mental Health Law. (1998). Psychiatric advance directive. Retrieved November 3, 2001. Available: http://www.Bazelon.org/ advdir.html Gallagher, E.M. (1998). Advance directives for psychiatric care: A theoretical and practical overview for legal professionals. Psychology, Public Policy, and the Law, 4, 746-787. Gutheil, T.C., & Appelbaum, P.S. (2000). Clinical handbook of psychiatry and the law (3rd ed.). Philadelphia: Lippincott, Williams & Wilkins. Honberg, R.D. (n.d.)Advance directives. Retrieved July 29, 2002. Available: http://www.nami.org/legal/advanced.html Howe, E.G. (2000). Lessons from advance directives for PADs. Psychiatry, 63, 173-177. Miller, R.D. (1998). Advance directives for psychiatric treatment: A view from the trenches. Psychology, Public Policy, and the Law, 4, 728-745.

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National Alliance For the Mentally Ill. (1999). PACT across America: An advocacy strategy. Retrieved June 6, 1999 and August 12, 2002. Available: http://www.nami.org/about/pactacross.html National Alliance For the Mentally Ill. (2001). Platform 8. Legal issues: 8.2 Involuntary commitment/court-ordered treatment. Retrieved August 12, 2002. Available: http://ocd.nami.org/update/platform/legal.htm National Mental Health Association. (n.d.). NMHA toolkit on psychiatric advance directives. Retrieved July 29, 2002. Available: http://www. nmha.org/position/advancedirectives.cfm New York State Office of Mental Health. (2000). Advance directives: Planning for the future. Retrieved November 3, 2001. Available: http:// www.ohm.state.ny.us/omhweb/omhq/q1299/advance%5Fplanning.htm Patient Self Determination Act of 1990, 42 U.S.C. § 1395 cc(f) & 1396a(w) (1994). Schopp, R.F. (2001). Competence, condemnation, and commitment: An integrated theory of mental health law. Washington, DC: American Psychological Association. Srebnik, D.S, & La Fond, J.Q. (1999). Advance directives for mental health treatment. Psychiatric Services, 50, 919-925. Stavis, P.F. (1999). The nexum: A modest proposal for self-guardianship by contract: A system of advance directives and surrogate committees-atlarge for the intermittently mentally ill. Journal of Contemporary Health Law and Policy, 16, 1-95. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) Principal Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized persons. Journal of the American Medical Association, 274, 1591-1598. Susman, J. (1998). The role of nurses in decision-making and violence prevention. Journal of Psychosocial Nursing and Mental Health Services, 36(7), 18-26. Swanson, J.W., Tepper, M.C., Backlar, P., & Swartz, M.S. (2000). Psychiatric advance directives: An alternative to coercive treatment. Psychiatry, 63, 160-172. Szasz, T.S. (1982). The psychiatric will: A new mechanism for protecting persons against “psychosis” and psychiatry. American Psychologist, 37, 762-770. Ulrich, L.P. (1999). The Patient Self-Determination Act: Meeting the challenges in patient care. Washington, DC: Georgetown University Press. Williams, X. (1999). Advance directives are what you make them. National Empowerment Center Newsletter. Retrieved November 3, 2001. Available: http://www.power2u.org/selfhep/directives.html

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