xxAACP Newsletter, Volume 15, Number 3, Summer 2001
Update on: Psychiatric Advance Directives
Psychiatric advance directives (PADs) allow competent persons to declare their preferences for mental health treatment and appoint a surrogate decision-maker in advance of a psychiatric crisis during which they may lose capacity to make reliable healthcare decisions. PADs are a response to an evolving debate in mental healthcare policy about the principle of respect for individual autonomy in decision-making when it may conflict with the responsibility to provide appropriate services to persons with severe mental illness. Over the past decade, this debate has fueled intense critiques of involuntary treatment and inspired new interest in psychiatric advance directives (PADs), as a possible remedy for loss of consumer autonomy in mental healthcare decisions. PADs are also hoped to reduce consumer alienation from the treatment process, and associated poor clinical outcomes.1-4 Based on the hope of reducing coerced treatment and improving treatment outcomes, more and more state legislatures are adopting PAD statutes and also encouraging the appointment of healthcare proxies for persons with severe mental illness.
Some states’ PAD statutes permit both an instructional directive, specifying preferences regarding future treatment, and appointment of an agent to state these preferences in person should the individual be incapacitated. While the notion of "contracts" for future psychiatric treatment has long been discussed,5 PADs began to gain wider attention following passage of the Patient Self-Determination Act (PSDA) in 1991. The PSDA requires any hospital receiving federal funds to notify all admitted patients of their right to create an advance directive.6 While intended mainly to give persons control over their own healthcare at the end of life, the PSDA also inspired mental health advocates to promote advance planning as a means for persons with psychiatric disorders to retain autonomy (e.g., by proxy), even during periods of incapacity.
PADs are a variation on general healthcare advance directives (ADs), which may include three types of anticipatory decision-making: (1) informed consent to future treatment; (2) a forecast of personal values to guide treatment decisions in contingent situations or events; (3) and the entrusting of someone to act as a proxy decision-maker. The role of a healthcare agent (HCA), or proxy decision-maker, is to help ensure that the patient’s previously expressed wishes are fulfilled; to further interpret what treatment the patient would wish to receive (or not receive); or to act in the patient’s best interest, to protect the patient’s welfare. Advocates of advance directives have hoped that such planning would foster useful dialogue between doctors and their patients, help patients to be better informed, and, finally, increase patients’ autonomy in making their own healthcare decisions at the end of life.7
Overview of PADs in the U.S. at present. Forty-six states permit some psychiatric treatment decisions to be addressed in generic healthcare ADs.8 However, a number of states that do allow mental health treatment decisions to be addressed in generic ADs limit the decisions that may be made and prohibit a surrogate from making particular treatment decisions. Surrogates in these states may not authorize placement in a mental health facility, electroconvulsive treatment, and involuntary commitment, even if authorized in the AD. Twelve states have laws that authorize advance directives specifically for mental healthcare. In all of these statutes, including North Carolina, revocation of the PAD is conditioned on competency such that the PAD remains in effect during incapacitating crises. Eight of the twelve states allow the appointment of a surrogate decision-maker as part the PAD, while the others allow appointment of healthcare agents through broader statutory provisions. Fairly consistent standards apply to surrogates acting on behalf of persons who lose capacity to make decisions about their mental healthcare. Oregon’s 1993 "Declaration for Mental Health Treatment"9 was among the first legal documents of this kind to be used in the United States. The 1997 North Carolina "Advance Instruction for Mental Health Treatment"10 was patterned after Oregon’s law, but was amended in 1998 to provide for appointment of surrogate decision-makers only through generic Health Care Power of Attorney.
Objections to PADs include a number of practical problems. Many people with a severe mental illness may be unable to prepare a reliable PAD. Completing the document ideally requires an understanding of PAD concepts, an accurate appraisal of one’s own illness trajectory, reasoned consideration of the benefits and drawbacks of specific treatment options, and the ability to articulate these preferences to a mental health professional. One must also manage the logistics of completing a legal PAD, such as obtaining witnesses and having the document notarized and recorded. There is no legal requirement that a person consult with a clinician before completing a valid PAD, which is perhaps an added potential problem with these documents’ implementation.3 However, individuals must possess a degree of insight into their symptoms and course of illness—in order, for instance, to recognize patterns in their responses to different medications. Some clinicians surveyed in an Oregon study predicted that consumers who most need to plan ahead for a psychiatric crisis, such as those with severe paranoid symptoms, will be least inclined to do so. Instead, according to this view, consumers who are relatively healthy, stable, insightful, and articulate—and those with relatively little risk of decisional incapacity in a future psychiatric crisis—are the ones who may be interested in PADs and able to complete them. Such selectivity would beg the question: Who really benefits from PADs?
While a PAD can be used to designate a surrogate decision-maker, many people with long-term mental illness are socially isolated and have no one involved in their lives that could serve as an appropriate healthcare proxy. Indeed, a mental health clinician may be their only "trusted friend." However, to prevent potential conflicts of interest, PAD statutes typically exclude treating clinicians from categories of persons that can serve as healthcare proxies.
Economic feasibility may also present a problem for implementing PADs in crisis care. What if consumers use PADs to request forms of treatment that are more expensive than they would otherwise receive—such as treatment with a novel medication, clinical management by a private psychiatrist, or admission to a particular facility? Will such preferences be honored for consumers unable to pay for treatment? If not, are PADs a sham?
Medical feasibility also may complicate implementation of PADs. Existing PAD statutes typically specify that clinicians are not bound by advance directives at variance with accepted standards of medical care and practice. However, it is not clear how this exception will be interpreted. In the extreme, it may mean that PADs will be honored only when they agree with a clinician’s opinion about treatment for the patient—in which case the PAD becomes superfluous, of merely symbolic benefit. The likelihood that PADs could be overridden (or simply ignored) by hospital clinicians causes significant concern to stakeholders who might otherwise favor PADs. Rather than facilitating continuity of care, some providers fear that PADs will backfire if not honored, causing patients to feel betrayed and further alienated from treatment, and perhaps jeopardizing case managers’ role as trusted patient advocates. A host of ethical issues are also raised about overriding—or honoring— the prior wishes of an individual now incapable of making treatment decisions.
A significant challenge to PAD implementation is how to ensure timely access to PAD information during a crisis. A hospital clinician seeing a new patient during a psychotic episode has no way of knowing whether the patient has a PAD, unless the patient tells the clinician or has a copy of the PAD on hand. In response to this potential problem, advocates for PADs propose a centralized computer registry to make the documents readily accessible to providers. Such a system has yet to be implemented.
The utility of PADs in outpatient treatment settings has yet to be tested. However, it seems likely that a PAD will be only as effective as the clinician or case manager who facilitates preparation of the document. PADs may work if prepared with adequate consultation, if integrated with a continuous treatment plan, and if regular follow-up services are available from a mental healthcare provider who is supportive of the PAD.
Clinicians and consumers interested in learning more about PADs can read more on-line at the Bazelon Center’s webpage at http://bazelon.org/advdir.html. Templates for developing PADs can be downloaded for use at the Bazelon site.
Jeffrey Swanson, PhD , Associate Professor of
Psychiatry and Behavioral Science, Duke University Medical Center.
Marvin Swartz, MD, Professor of Psychiatry and
Behavioral Sciences and Head, Division of Social and Community Psychiatry, Duke
University Medical Center.
References:
1. Swanson, J.W.,
Tepper, M.C., Backlar, P.B., & Swartz, M.S. (2000). "Psychiatric
Advance Directives: An Alternative to Coercive Treatment?" Psychiatry,
63 (2): 160-172.
2.
Srebnik, D.S. & La Fond, J.Q. (1999). Advance directives for mental
health treatment. Psychiatric Services, 50 (7): 919-925.
3.
Backlar, P. (1995). The longing for order: Oregon’s Medical Advance
Directive for Mental Health Treatment. Community Mental Health Journal,
31(2): 103-108.
4.
Backlar, P. & McFarland, B.H. (1996). A survey on use of advance
directives for mental health treatment in Oregon. Psychiatric Services,
47(12): 1387-1389.
5.
Appelbaum, P.S. (1991). Advance directives for mental health treatment. Hospital
and Community Psychiatry, 42:983-984.
6.
Greco, P.J., Schulman, K.A., Lavizzo-Mourey, R., & Hansen-Flaschen,
J. (1991). The Patient Self-determination Act and the future of advance
directives. Annals of Internal Medicine, 115: 639-643.
7.
Pearlman, R.A. (1994). Are we asking the right questions? Special
Supplement, Hastings Center Report, 24 (6): S24-S27.
8.
Fleischner, R.D. (1998). An analysis of advance directive statutes and
their application to mental health care and treatment. Prepared for the
Advocacy Training/Technical Assistance Center (ATTAC) of the National
Association of Protection & Advocacy Systems, Inc. (NAPAS).
9.
Oregon Revised Statutes (1993) ORS 127.700-127.737.
10.
North Carolina General Statutes (1997). N.C. Gen. Stat. 122C-71.
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