Psychiatric advance directives can be one tool to assert your right to be free from coerced psychiatry, but they can sometimes be “superceded” or even misused as a tool against your human rights. The Journal of the American Academy of Psychiatry & Law had a dialogue featuring an article and replies, including from Robert Bernstein, director of Bazelon Center, an MFI Sponsor Group.
Journal of American Academy of Psychiatry Law
34:3:385-394 (2006) by the American Academy of Psychiatry and the Law.
ANALYSIS AND COMMENTARY
Superseding Psychiatric Advance Directives: Ethical and Legal Considerations Jeffrey W. Swanson, PhD, S. Van McCrary, PhD, JD, Marvin S. Swartz, MD, Eric B. Elbogen, PhD and Richard A. Van Dorn, PhD Dr. Swanson is Associate Professor, Dr. Elbogen is Assistant Professor, and Dr. Van Dorn is Research Assistant, Department of Psychiatry and Behavioral Sciences; and Dr. Swartz is Professor of Psychiatry and Head, Division of Social and Community Psychiatry, Duke University School of Medicine, Durham, NC. Dr. McCrary is Associate Professor, Department of Preventive Medicine, and Senior Fellow, Institute for Medicine in Contemporary Society, School of Medicine, Stony Brook University, Stony Brook, NY. This work was supported by the Greenwall Foundation, the John D. and Catherine T. MacArthur Foundation Research Network on Mandated Community Treatment, and the National Institute of Mental Health through a research grant (R01-MH063949) and an Independent Research Scientist Career Award (K02-MH67864) to Dr. Swanson. Address correspondence to: Jeffrey W. Swanson, PhD, Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Box 3071, Durham, NC 27710. E-mail: email@example.com
Psychiatric advance directives (PADs) were introduced in the 1980s as legal instruments for psychiatric patients to retain some choice over their own mental health treatment during periods of decisional incapacity. However, PADs are nested in larger structures of mental health law and policy that protect the interests of parties other than the patient, and which, in situations of conflict involving the treatment of incapacitated patients, tend to favor the clinician’s professional judgment over the patient’s manifest wishes to avoid standard treatment. Thus, PADs are trumped by civil commitment law and may also be legally overridden by clinicians who, acting in good faith, consider PAD instructions to be inconsistent with accepted clinical standards of care. We discuss philosophical-ethical and legal issues surrounding overriding PADs and offer analysis of the possible future of legal cases in which the question of overriding PADs and fiscal concerns may collide.
Psychiatric advance directives (PADs) were introduced in the 1980s as a means for psychiatric patients to retain choice and control over their own mental health treatment during periods of decisional incapacity.1–4 PADs provide two legal devices—mental health advance instructions and proxy decision-makers—that can be used, separately or together, to refuse or consent to specific types of treatment during a future mental health crisis. Twenty-five states have enacted PAD statutes, and new research suggests there is high latent demand for PADs; 66 to 77 percent of over 1,000 mental health consumers recently surveyed in five U.S. cities indicated that they would complete PADs if given the opportunity and assistance to do so.5 However, the new PAD statutes contain a large contradiction: although the intent of PADs is to increase patient self-determination, PAD statutes allow doctors to override treatment requests they deem inappropriate. The extent to which clinicians override PADs in practice, the situations in which they override them, their reasons for doing so, and how they communicate these reasons to patients and family members could either seriously undermine PADs or actually help to implement these legal instruments more broadly. In this article, we discuss criteria for superseding PADs and the ethics implications for overriding or honoring them. We also speculate on legal prospects for the override features of current PAD statutes.
The Legal Backdrop for Overriding PADs
Current state laws that authorize PADs give doctors wide discretion to ignore them. Specifically, in cases in which the patient’s advance choice of treatment (or choice to forgo treatment) conflicts with the doctor’s view of the standard of care, PAD laws do not require that doctors follow the patient’s wishes; more to the point, most of these laws provide broad legal immunity to doctors who, in good faith and consistent with clinical standards, decline to follow, in whole or in part, a patient’s advance treatment instructions as documented in a PAD. Clinicians are obligated to follow whatever portions of the PAD they can, even if they override some particular instructions. However, that clinicians are granted discretion to decide which PAD instructions are to be followed and which are not weakens the instrument to some degree. Weakening PADs even further, civil commitment law trumps a PAD in every U.S. jurisdiction.
The override features typical of PADs are clearly illustrated in the language of one of the newest PAD statutes to be enacted in the United States: Pennsylvania’s mental health advance directive and powers of attorney law (Act 194), which became effective on January 30, 2005. Pennsylvania’s PAD statute is modeled after, and incorporates, many of the features of other states’ statutes, most of which were enacted in the 1990s. The Pennsylvania law allows competent individuals to specify their wishes directly regarding mental health treatment before becoming incapacitated, and to appoint an agent to carry out their wishes during future periods of incapacity. The law also reinforces the requirements of the federal Patient Self-Determination Act of 1990 by obligating facilities and providers of mental health treatment to ask patients whether they have a PAD when they are admitted for treatment and to inform all patients about the availability of PADs as part of discharge planning. Treatment facilities are also required to place a copy of the mental health advance directive or power of attorney in the patient’s mental health record.
However, Pennsylvania’s Act 194 also contains three specific sections devoted to ensuring that physicians can override these directives with few (if any) consequences. First, the section on construction of the law explicitly states that the PAD statute shall not be construed to affect “the ability to admit a person to a mental health facility under the voluntary and involuntary commitment provisions of the Mental Health Procedures Act.”6 Second, the section on compliance contains a clause allowing a physician, who “cannot in good conscience comply” with the instructions of an agent appointed under a PAD because the instructions are “contrary to accepted clinical practice and medical standards,” to refuse to comply so long as he or she makes “every reasonable effort” to assist in the transfer of the patient to another provider who is willing to comply. If reasonable efforts to transfer the patient fail, the patient may be discharged, at least under the statute.7 Third, the section on liability states that a physician who acts in good faith may not be subject to criminal or civil liability or disciplined for unprofessional conduct as a result of refusing to comply with a PAD, the provisions of which the provider deems violate “accepted clinical standards or medical standards of care.”8
Thus, according to Pennsylvania’s (quite typical) PAD statute, as long as mental health care providers act in good faith on the basis of their perception of the standard of care, and make reasonable efforts to transfer the patient, the law provides virtually complete protection for the provider from the consequences of overriding a PAD. In effect, whereas PADs are supposed to promote psychiatric patients’ autonomy and self-determination, these instruments may actually reinforce doctors’ professional autonomy.
The Problem with Advance Directives
Psychiatrists’ responses to PADs can be understood in the larger context of the development of medical advance directives, which have faced similar challenges and problems over the years. Like PADs, medical advance directives were seen as having great potential to help guide difficult medical decisions for incompetent persons, and were expected to provide the means for people to fulfill their wishes regarding their own health care after they could no longer speak for themselves. In practice, however, such directives—particularly “living wills” containing written treatment instructions—often failed to live up to expectations.
Beginning with California in 1976, all states enacted advance directive statutes of some sort, including either living wills (containing instructions about particular treatments and medical conditions) or durable powers of attorney (appointing a surrogate decisionmaker) or both.9 The federal Patient Self-Determination Act of 1990 (PSDA) was later enacted to promote the use of written advance directives after the U.S. Supreme Court, in Cruzan,10 permitted states to apply a strict evidentiary standard of “clear and convincing evidence” to oral statements by patients who had not completed written directives. The PSDA requires health care facilities receiving federal funds to inform patients of their rights under state law to prepare an advance directive, to inquire and document whether patients have executed a directive, to ensure compliance with state laws by respecting advance directives, and to educate health care providers regarding these legal instruments.11 Despite the PSDA, research suggests that the prevalence of written medical advance directives in the general public remains no higher than 25 percent (possibly much lower in many locations) and did not substantially increase after passage of the federal law.12–16
A number of studies have suggested reasons why written medical advance directives have had limited success and have not been widely adopted. First, even when patients have executed written advance directives, physicians often are not aware of them. Perhaps more important, when physicians are aware of advance directives, these documents often have limited or no effect on clinical decisions.14,17–20
That clinicians are granted (by law or in practical reality) considerable leeway to override medical advance directives at their discretion has contributed to the belief among many observers that advance directives (especially living wills) “have no teeth”—and that they may never be very effective vehicles for enacting patients’ true preferences. There are limited empirical data regarding the practice of overriding medical advance directives, but clinical experience and anecdotal reports suggest that overrides occur with some frequency.21–25
Overriding patients’ advance directives raises several ethics concerns. It would seem that physicians have an ethics (if not always a legal) obligation to try to honor advance directives, in that doing so conveys respect for patients as persons and enhances their well-being—core values at the foundation of patient self-determination.26 In contrast, when a physician deliberately overrides a patient’s competently executed advance directive, the physician may violate the principles of informed consent to treatment, including the patient’s right to refuse treatment, and, in effect, usurp the power that the law has invested in advance directives, to ensure that persons receive treatment that they would choose and do not receive treatment that they would refuse, when incapacitated.
Medical Advance Directives and PADs
Notwithstanding the aforementioned problems, there are legitimate reasons why physicians might override some advance directives in good faith. Brock21 has outlined three general types of scenarios in which health care providers might consider overriding a medical advance directive: (1) when there are good reasons to doubt that the advance directive accurately reflects what the patient would have wanted; (2) when the moral authority of the advance directive is questionable due to conflict with important current interests of the patient and/or changes in the patient’s personal identity; and (3) when the interests of persons other than the patient warrant overriding the directive. In the following discussion, we review possible implications of these scenarios for PADs and the question of whether PADs in practice will be (or perhaps should be) overridden in certain situations. We then offer some analysis of the possible future of legal cases where issues of overriding PADs and fiscal concerns may collide.
Considering Brock’s first scenario from a clinical point of view,21 uncertainty about what the patient actually wants might offer a reasonable justification for overriding a PAD. Severe and persistent mental illness can impair persons’ baseline ability to make and communicate reliable decisions about their own health care. Hence, at least some persons with psychiatric disabilities may never be the best judges of what is in their own best interest, or even the best voice of their own authentic preferences. Carl Elliott has phrased the problem this way:
People do not always mean what they say; they do not always say what they want; and they do not always want what they say they want. That much is, if not exactly clear, at least uncontroversial. What is controversial is, recognizing this, how to proceed. How are we to interpret statements made by a patient who is now, by virtue of his medical condition, unable to interpret them for us? [Ref. 27, p 61].
However, from the perspective of patients with a long history of psychiatric treatment, PADs may actually convey treatment preferences much more accurately than medical advance directives or living wills do, to the extent that such preferences are shaped by previous personal encounters with the health care interventions in question. Precisely through their accumulated personal experience with the negative and positive aspects of treatment, psychiatric patients may gain a more authentic appreciation of the personal value of avoiding or receiving particular types of treatment in the future. In contrast, medical patients who execute living wills may lack this relevant experience and appreciation of future treatment contingencies. That patients complete advance directives having no familiarity with the actual situations or decisions they will face in the future grants physicians, under some circumstances, an ethical warrant to override such directives as invalid expressions of a person’s true preference.
For example, an experienced anesthesiologist might argue that a critically ill patient’s advance instruction “never to put me on a ventilator if I am in a coma” does not reflect what the patient would actually want in a real situation confronted years later—particularly if the patient had never experienced being critically ill at the time the advance directive was executed, and if there is a reasonable probability of recovery. In contrast, a psychiatrist would be hard pressed to argue that a patient with schizophrenia who has been repeatedly hospitalized and treated with haloperidol lacks the personal experience to inform, in a PAD, refusal of this drug or refusal of hospitalization. Also, the range of treatment options and choices may be much more constrained in mental health care, compared with end-of-life medical care, making it easier to predict the contingencies one might actually face during a future mental health crisis. In short, highly specific PADs may be less susceptible to override than medical advance directives.
Of course, PAD instructions may also raise such doubts, in some situations, about whether a particular advance instruction accurately reflects what the person would have wanted. Consider, for example, a patient who refuses electroconvulsive therapy (ECT) in a PAD, but has never experienced ECT. Let us suppose the patient later experiences severe, life-threatening depression that is refractory to antidepressant medications. It is not difficult to imagine a physician second-guessing such a PAD by asking: “Would this person really have wanted to forego the best—and perhaps only—remaining effective treatment option?”
Brock’s second criterion contains two components and addresses the complex issue of what is to be done, first, when the person has “suffered such profound cognitive changes that there are doubts about whether personal identity is maintained between the person who executed the advance directive and the present patient” (Ref. 21, p 55), and second, when the directive seems to be in conflict with important present interests of the person. On this score, PADs may be susceptible to override.
For some clinicians, the simple fact that PADs are typically completed by patients who have chronic disorders that impair thinking, judgment, insight, and basic perception of reality may call into question the validity of the advance instructional document. Cognitive impairment associated with major psychopathology may be long-lasting, and may even become a permanent feature of an altered personality. Such cases might cast doubt on the assumption of continuity of “identity” and agency between the patient’s self as currently presented and the “prior” self as represented by the PAD document. For similar reasons, some ethicists have opposed PADs altogether as instruments of “self paternalism” or “Ulysses contracts” that inappropriately favor the documented preferences of a prior self over those of the present person, arguably a valid self and worthy of respect, even in a psychotic state.28,29 Concerns about patient safety—suicidality, in particular—may also call into question the moral authority of a treatment-refusal PAD, due to potential conflict between the patient’s autonomy interests and the patient’s present safety and survival interests.
In the third scenario for overriding medical advance directives, the interests of others justify not honoring the directive. The example Brock21 offers for this situation is when the interests of a patient near death have substantially diminished and interests of the family are the driving force in medical decisionmaking—a phenomenon colloquially known as “treating the family.” The “other interests” may also involve the interests of physicians or society in general, rather than family members. For example, physicians may assert a prerogative to override a medical advance directive in cases where the doctor believes further life-sustaining treatment will be physiologically futile, yet the patient, via an advance directive, or the patient’s family directly, is demanding that aggressive treatment be continued. One could argue that forcing a physician to prescribe aggressive treatment under such circumstances would violate his or her professional integrity and, more broadly, the integrity of the medical profession itself.30 An additional argument along these lines might be made on the basis of distributive justice: that it is unfair to expend scarce medical resources on futile care for one patient merely because that patient requests such care in advance, when other patients who might benefit are going without needed treatment due to lack of resources.
Physicians’ legal defensiveness is another powerful factor representing “other party interests” that may influence PAD override decisions. In earlier studies,31,32 we defined “legal defensiveness” broadly to refer to clinicians’ general level of concern about the implications of both civil and criminal law regarding their treatment decisions for seriously ill patients. Specifically, legal defensiveness in this context refers to the aggregate of clinicians’ attitudes and practices arising from, or attributed to, the perceived threat of legal sanction in response to their decisions to intervene (or not to intervene) in particular ways for incapacitated psychiatric patients.
In one of these studies, Swanson and McCrary31 examined the effects of physicians’ legally defensive attitudes on their responses to hypothetical end-of-life treatment scenarios in a survey of 301 physicians practicing in academic medical centers in Texas. We found that physicians with attitudes of extreme legal defensiveness were more likely to define what constituted futile versus beneficial treatment at an arbitrary threshold which, in effect, maximized the physician’s latitude and prerogative to override patients’ (ostensibly reasonable) preferences for end-of-life treatment abatement. These findings suggest that some physicians (though a minority) tend to assume an adversarial position in their consideration of treatment decisions for critically ill patients—an attitude that anticipates, and thus may actually create, conflict with these patients or their surrogates.
Considering PADs along these lines, a legally defensive psychiatrist might be expected to override a patient’s advance refusal of treatment primarily out of concern for being held legally liable for any adverse consequences that might follow from honoring the patient’s request—such as the possibility that the patient might engage in violent behavior if left untreated.
More broadly, the “other party interests” scenario may arise for PADs when physicians feel professionally or socially obligated to provide treatment that the patient has refused in advance. For example, the potential conflict between the interests of patients and those of physicians and others was highlighted in a recent decision of the U.S. Court of Appeals for the 2nd Circuit (Hargrave v. Vermont),33 which struck down a state law that allowed mental health professionals to override a person’s advance refusal of psychotropic medications through a general health care proxy.34–36 Specifically, the court ruled that the Vermont override law, which applied only to persons with psychiatric disorders, was discriminatory on the basis of disability and thus violated the Americans with Disabilities Act, Title 3. Opponents of the court’s decision in Hargrave have argued, among other things, that priority should have been given to the larger interests of society in this matter—for example, the interests of taxpayers who might ultimately have to pay for longer hospital stays for psychiatric patients with PADs that refuse antipsychotic medications.
Brock’s third type of override scenario21 has a special application in the case of patients with PADs who also meet criteria for involuntary civil commitment. As we have already suggested, in every U.S. jurisdiction with a PAD statute, PADs may be overridden by a civil commitment order for patients whose condition qualifies for such intervention either (1) under the doctrine of parens patriae or (2) through exercise of the state’s “police powers” to protect public health and public safety (e.g., in the case of a patient with a violent history who is considered to pose a danger to others).37
There is some irony in the fact that involuntary commitment legally trumps a PAD, because PADs have been promoted to stakeholders explicitly as a means to avoid or decrease the incidence of involuntary treatment. The potential for conflict between the interests of patients and those of others, including the safety interests of the general public, highlights a key weakness inherent in PADs. There is no clearly identified legal mechanism, other than involuntary commitment, to enforce a patient’s own advance wishes for treatment if the patient later resists such treatment when incapacitated. Likewise, there is no legal mechanism that will enforce a patient’s right to refuse all intervention at a time when the patient poses an imminent danger to self or others.
Brock’s third criterion may also apply in cases of iatrogenic illness (i.e., when the patient’s condition has been caused, or exacerbated, by the physician himself or herself). Research suggests, for example, that physicians are significantly more likely to override a patient’s do-not-resuscitate (DNR) order when the cardiopulmonary arrest is due to a complication of treatment, especially when the complication arises from a physician’s error.38,39 Similarly, surgeons and anesthesiologists often demand that patients’ DNR orders be suspended in perioperative settings before they will agree to perform or facilitate palliative surgical procedures for terminally ill patients.40–42 The reasoning provided in both of these examples includes: (1) fear of peer and professional condemnation for a patient death (especially where hospital policy views all deaths in surgical contexts as “unexpected”); (2) personal feelings of failure when physicians are more directly responsible for a patient’s death; and (3) fear of litigation for negligence or even homicide.41,42
Regarding PADs, analogous situations could arise if clinicians are faced with PAD refusals of treatment for patients whose mental health crises are ostensibly “caused,” or at least made worse, by previous episodes of inadequate treatment or preventable adverse side effects of treatment. For example, consider a PAD refusal of all antipsychotic medications (similar to the actual request of Nancy Hargrave, the plaintiff in Hargrave v. Vermont) by a currently psychotic patient who has been treated in the past only with old-line neuroleptics that have caused unpleasant extrapyramidal symptoms and tardive dyskinesia. A psychiatrist might consider overriding such a patient’s PAD and prescribing a newer (and more expensive) pharmacotherapy regimen (e.g., olanzapine) which is known to be more tolerable and perhaps more effective in relieving psychotic symptoms. The psychiatrist’s ethical and practical reasoning here might be: (1) mental health professionals—or, broadly, the mental health care system—are partly responsible for the patient’s past adverse experiences with treatment; (2) these past experiences have contributed both to the present crisis and to the patient’s distorted preference to forego all medication, a preference that may be considered misinformed because it includes refusal even of medications that the patient has never tried and which the psychiatrist believes would benefit the patient; and (3) therefore, under these circumstances, it would be irresponsible and perhaps negligent for the psychiatrist to honor the patient’s PAD refusal. A similar situation may occur in the case of a PAD refusal of hospitalization, when the psychiatrist believes that the alternatives available for intervention and treatment in the community are poor, or that lack of access to adequate community-based care has contributed to the patient’s current relapse.
Legal Challenges to Overriding PADs
All of these reasons for overriding PADs assume what the state statutes make explicit—that it is legally permissible for doctors to do so. But the question arises, how firm is the legal footing on which the override features of the current PAD statutes rest? The case of Hargrave v. Vermont remains today the latest word from the federal courts on the overriding of PADs. Yet, the fiscal and social concerns of some critics of this decision are not easily dismissed. The practical implication of the court’s decision was to impose an obligation on the state of Vermont to provide inpatient custodial care to acutely ill patients like Nancy Hargrave on an indefinite basis, allowing their symptoms to remain untreated if they have documented in advance a (presumably competent) wish to forego medication.
Vermont did not seek a writ of certiorari from the U.S. Supreme Court to review the Second Circuit Court’s decision in Hargrave. Presumably, state officials decided against appealing this decision because the number of patients affected would likely be very small, and the state was willing to assume financial responsibility in the event that extended inpatient care would be needed in such cases. However, other states may be less willing to face the prospect of financing essentially custodial care for severely ill but otherwise treatable psychiatric patients—particularly in the absence of a determination of dangerousness.
No other case like Hargrave appears to have been adjudicated in any other jurisdiction to date. However, with more and more states adopting PAD statutes, and new research showing a large latent demand for PADs among consumers in public mental health systems throughout the United States,5 it is perhaps not unlikely that another case will arise to challenge the states’ authority to override advance refusals of treatment. It is difficult to predict what the outcome would be. On the one hand, if a similar case were to be litigated in one of the 22 states with PAD statutes that currently allow physicians to override PADs (essentially at their discretion, on the basis of their perception of the standard of care), the precedent of Hargrave and the federal ADA might make it quite difficult for states to defend these special override provisions, in that they apply only to psychiatric patients’ directives. On the other hand, critics of the Hargrave decisions (and fiscal conservatives generally) might take a different tack. It could be argued that even if Nancy Hargrave had the right, while competent, to refuse treatment with medication during a future period of incapacity, she was not entitled to have the state pay for extended inpatient care so that she could remain indefinitely untreated with medication. It might follow from such an argument that funding for psychiatric hospital care could be denied to any patient who refuses medication in advance, provided the patient was not dangerous.
Some of the states’ PAD statutes already include language suggesting that PAD instructions do not entitle patients to receive services that are not “feasible” or would not otherwise be paid for (i.e., in the absence of a PAD). For example, a PAD request to be admitted to a private drug abuse rehabilitation program carries no obligation for the provider to offer this to the patient on any different terms than would have obtained without the PAD. One could imagine broadening these statutory “feasibility” provisions to include denying payment for any hospitalization without medication, on the grounds that such a hospitalization would be unfeasible, and would be longer and more expensive than would have been the case without the PAD refusal of medication. The potential shift of the burden of care for treatment-resistant psychiatric patients from public resources to family, private, or other resources might also be raised as an ethics and public policy issue.
What would be the legal implications of such a policy? Perhaps there are some clues in the claims asserted by the parties in Hargrave—particularly certain constitutional arguments that were raised, but overshadowed by the ADA issue on which the courts actually decided the case. Both the district court and the Second Circuit in Hargrave based their decisions solely on statutory grounds (i.e., that the federal ADA superseded the state statute because of its facially discriminatory application). However, in the district court, both parties also made constitutional arguments, with Vermont claiming that to permit a durable power of attorney for health care to trump the state’s authority to treat committed persons would be contrary to the state’s police and parens patriae powers, while the plaintiff argued that Vermont’s actions were a violation of her procedural and substantive due process rights under the Fourteenth Amendment of the U.S. Constitution. These constitutional arguments were not adjudicated by either the District Court43 or the Second Circuit.33
But suppose that the Vermont state legislature (or any state legislature, in response to a similar case) were to pass a statute denying funds for inpatient care of nondangerous persons who competently refuse medication in advance of a mental health crisis. On the one side, such a statute might be construed in some cases to conflict with the state’s parens patriae obligation to care for persons who cannot care for themselves. On the other side, it might raise, in a new context, some of the central questions that have animated the right-to-die debate. Do individuals have a fundamental right to refuse treatment? If so, does such a right supersede a state’s parens patriae authority and, perhaps, even obligate the state to fund its exercise with public resources? Further claims of discrimination might be raised, too, by comparison with the lot of terminally ill patients who refuse life-sustaining intervention and are not thereby denied publicly funded custodial hospital care.
Such a statute probably would face a constitutional challenge, which would ultimately have to be decided in the federal courts. The U.S. Supreme Court has consistently held, except in cases where rights previously determined to be fundamental (such as the right to relocate from state to state) are penalized by denial of state benefits, that persons have no constitutional right to receive public financing of social services and, hence, that state discretion in limiting any such benefit or service is very broad.44–48 Because the U.S. Supreme Court has never specifically held that the right of competent persons to refuse treatment is fundamental (despite limited dictum to that effect in Cruzan10) and has instead allowed states to impose evidentiary restrictions and other obstacles to patient autonomy in such cases, it is not at all clear that the current Court would impose on such state statutes the judicial standard of strict scrutiny reserved for fundamental rights. The state’s arguments in such a case could take the following forms: (1) even if Nancy Hargrave has a right to refuse medication, she has no corresponding right requiring the state to fund her indefinite care in the absence of her willingness to take medication (at least on a trial basis); and (2) the state has a legitimate interest, perhaps even a compelling one, to take steps to prevent unnecessary harm to mentally ill persons by providing them with treatment proven to ameliorate their symptoms. Such arguments have been persuasive in similar cases on the basis that decisions allocating state monies do not penalize the exercise of a right; they simply fail to fund its exercise. It seems likely that if a state passed a statute like that described above, many courts would not overrule it on constitutional grounds. If circuit courts of appeal did reach varying conclusions, it might persuade the U.S. Supreme Court to grant certiorari.
Further, consider social and humanitarian concerns that could be raised in cases like that of Nancy Hargrave. Even if the patient prefers to remain unmedicated, what are the implications of a state policy that confines such persons with mental illness, possibly adding to their suffering? Is such a position wise social policy? Should the state provide an incentive for patients to accept treatment by forcing them to rely on private health insurance in such cases (if they have it)? These and similar issues have been raised eloquently by Dr. Paul Applebaum, who notes, “If large numbers of patients were to complete advance directives such as Nancy Hargrave’s, declining all medications, hospitals might well begin to fill with patients whom they could neither treat nor discharge” (Ref. 35, p 752).
Also consider how such a case could present a direct conflict between a statute such as Pennsylvania’s and the Hargrave decision, whereas under the Pennsylvania-type statute, a patient could be discharged if attempts to transfer were unsuccessful, but in a jurisdiction bound by Hargrave, the patient could not be discharged unless he or she recovered (presumably without medication) and no longer met involuntary commitment criteria. Because Nancy Hargrave chose to remain unmedicated, she probably had very distinct preferences (which could have been vitiated) about whether she would want to do so in an institutional setting or be allowed her freedom. In a vigorous exchange with Dr. Appelbaum, Michael Allen, a staff attorney at the Bazelon Center for Mental Health Law, argues that the “consumer’s wishes” are dominant and that if psychiatrists were no longer allowed to override a PAD, “trust building, peer support, talk therapy, and other naturalistic supports” would be acceptable (and implicitly feasible) alternatives.34 Dr. Appelbaum’s response argues that Allen’s solution ignores one inevitable fact—that in some cases of severe mental disorders, trust cannot be built, nor alliances established, despite the best efforts of providers.49 The combined impact of these problems could present untenable conflicts for both physician and patient. Dr. Appelbaum further suggests that a major practical consequence of Hargrave is that psychiatrists will be reluctant to encourage (or perhaps even actively discourage) their patients to sign PADs. This result could constitute the worst of both worlds, where lawmakers believed they had given patients a legal way to implement their choices, but instead conflicts between statutes and case law combine with provider reluctance in a way that, paradoxically, disempowers patients without offering treatment to ameliorate their suffering. Such an outcome should be avoided if at all possible.
The new PAD statutes contain a large contradiction: among the provisions of these “let-the-patient-decide” laws are exceptions, which, in effect, render PADs as “let the doctor decide after all” (or, perhaps more accurately, “let the doctor decide whether the patient gets to decide”). PADs are qualified and nested in larger structures of law and policy that protect the interests of parties other than the patient, and which, in situations of conflict involving the treatment of incapacitated patients, tend to favor the clinician’s professional judgment over the patient’s manifest wishes to avoid standard treatment.
It is too soon to hazard any confident prediction about whether PADs, and the practice of overriding them, will become a prevalent or problematic feature of the mental health services landscape in the years to come. The legal prognosis for state laws that currently protect physicians’ prerogatives to override PADs is also uncertain. We can, however, speculate that the successful implementation of PADs will depend, to no small degree, on clinicians’ individual decisions to honor, and in some situations to set aside, patients’ wishes documented in PADs. Having reasonable safeguards for clinicians who decline PAD requests or refusals of treatment (i.e., when such requests clearly deviate from ethics- and evidence-based standards of care) may be not only prudent, but necessary for clinicians to support broad implementation of PADs and for patients in general—the vast majority of whom will never use PADs to refuse all treatment—to derive any benefit from them.50,51
By their nature, PADs are complex vehicles of communication. They may be used to accomplish a variety of goals and may serve several functions: proscription as well as prescription of future treatment, engagement of a trusted third party as a surrogate decisionmaker, and the so-called Ulysses contract—a form of self protection against the potentially adverse consequences of one’s own decisions during a future state of mind impaired by acute psychiatric illness. PADs almost unavoidably raise the specter of advance refusals of treatment during such states and, thus, the possibility of direct conflict with the professional standards and scruples of treating clinicians. That such clinicians are also, these days, acutely attuned to the nuances of legal risk and that they would generally rather be sued by disenfranchised psychiatric patients than by their family members (or, in the worst case, by the victims of the patients) brings to front and center the possibility that such directives will be overridden. And what then? Again, it is too soon to tell, but the fate of PADs, and the rights of clinicians to override them, will probably depend on the reasons for, as much as the results of, clinicians’ decisions to disregard patients’ advance wishes in individual cases. Some of the reasons that mental health professionals might override PADs may correspond to recognized and justifiable criteria for overriding medical advance directives in general. Other reasons and motives, however, may simply represent an inappropriate exercise of medical paternalism.52 Legal policy development, formulation, and application of clear guidelines for overriding PADs and educational outreach to clinicians regarding this and other issues surrounding PADs are all needed, but are hampered by the lack of empirical research on these topics.
Szasz TS: The psychiatric will: a new mechanism for protecting persons against “psychosis” and psychiatry. Am Psychol 37:762–70, 1982[Medline] Appelbaum PS: Michigan’s sensible “living will” [letter]. N Engl J Med 301:788, 1979[Medline] Appelbaum PS: Advance directives for mental health treatment. Hosp Community Psychiatry 42:983–4, 1991[Free Full Text] Backlar P: The longing for order: Oregon’s medical advance directive for mental health treatment. Community Ment Health J 31:103–8, 1995[Medline] Swanson JW, Swartz MS, Ferron J, et al: Psychiatric advance directives among public mental health consumers in five U.S. cities: prevalence, demand, and correlates. J Am Acad Psychiatry Law 34:43–57, 2006[Abstract/Free Full Text] 20 Pa. Cons. Stat. 5843(a)(4) (2004) 20 Pa. Cons. Stat. 5804 (a)(2) and 5804(b) (2004) 20 Pa. Cons. Stat. 5805(a)(6) (2004) Meisel A, Cerminara KL: The Right to Die: The Law of End-of-Life Decisionmaking. New York: Aspen Publishers, 2005 Cruzan v. Missouri Dep’t of Health, 497 U.S. 261 (1990) Omnibus Budget Reconciliation Act of 1990, Pub. L. No. 101-508, 4206, 4751, 104 Stat. 1388-115-117, 1388-204-206 (codified as 42 U.S.C.A. 1395cc(f) (West 1995 & Supp. 2002)) (1990) Bradley EH, Wetle T, Horwitz SM: The Patient Self-Determination Act and advance directive completion in nursing homes. Arch Fam Med 7:417–23, 1998[Abstract/Free Full Text] Emanuel EJ, Weinberg DS, Gonin R, et al: How well is the Patient Self-Determination Act working?—an early assessment. Am J Med 95:619–28, 1993[Medline] Lo B, Steinbrook R: Resuscitating advance directives. Arch Intern Med 164:1501–6, 2004[Abstract/Free Full Text] Silverman HJ, Tuma P, Schaeffer MH, et al: Implementation of the patient self-determination act in a hospital setting: an initial evaluation. Arch Intern Med 155:502–10, 1995[Abstract] Teno J, Lynn J, Wenger N, et al: Advance directives for seriously ill hospitalized patients: effectiveness with the Patient Self-Determination Act and the SUPPORT intervention. J Am Geriatr Soc 45:500–7, 1997[Medline] Danis M, Patrick DL, Southerland LI, et al: Patients’ and families’ preferences for medical intensive care. JAMA 260:797–802, 1988[Abstract] Fagerlin A, Schneider CE: Enough: the failure of the living will. Hastings Center Rep 34:30–42, 2004 Hanson LC, Tulsky JA, Danis M: Can clinical interventions change care at the end of life? Ann Intern Med 126:381–8, 1997[Abstract/Free Full Text] Prendergast TJ: Advance care planning: pitfalls, progress, promise. Crit Care Med 29(suppl):N34–N39, 2001 Brock DW: Trumping advance directives. Hastings Center Report 21:S5–S6, 1991 Danis M: Following advance directives. Hastings Center Report 24:S21–S23, 1994 Danis M, Southerland LI, Garrett JM, et al: A prospective study of advance directives for life-sustaining care. N Engl J Med 324:882–8, 1991[Abstract] Hardin SB, Yusufaly Y: Difficult end-of-life treatment decisions: do other factors trump advance directives? Arch Intern Med 164:1531–3, 2004[Abstract/Free Full Text] Howe EG: Lessons from advance directives for PADs. Psychiatry 63:173–7, 2000[Medline] President’s Commission for the study of Ethical Problems in Medicine and Biomedical and Behavioral Research: deciding to forego life-sustaining treatment: a report on ethical medical and legal issues in treatment decisions. Washington, DC: U.S. Government Printing Office, 1983 Elliott C: Meaning what you say. J Clin Ethics 4:61–2, 1993[Medline] Dresser R: The Ulysses Contract: bound to treatment. Hastings Center Rep 14:13–16, 1984 Swanson JW, Tepper MC, Backlar PB, et al: Psychiatric advance directives: an alternative to coercive treatment? Psychiatry 63:160–72, 2000[Medline] Schneiderman LJ, Jecker NS, Jonsen AR: Medical futility: its meaning and ethical implications. Ann Intern Med 112:949–54, 1990[Medline] Swanson JW, McCrary SV: Medical futility decisions and physicians’ legal defensiveness: the impact of anticipated conflict on thresholds for end-of-life treatment. Soc Sci Med 42:125–32, 1996[Medline] McCrary SV, Swanson JW, Coulehan J, et al: Physicians’ legal defensiveness in end-of-life treatment decisions: comparing attitudes and knowledge in states with different laws. J Clin Ethics 17:15–26, 2006[Medline] Hargrave v. Vermont, 340 F.3d 27 (2nd Cir. 2003) Allen M: Hargrave v. Vermont and the quality of care. Psychiatric Serv 55:1067, 2004[Free Full Text] Appelbaum PS: Psychiatric advance directives and the treatment of committed patients. Psychiatr Serv 55:751–2, 763, 2004[Free Full Text] Keefe B, Pinals DA: Durable power of attorney for psychiatric care. J Am Acad Psychiatry Law 32:202–4, 2004 Jacobson v. Massachusetts, 197 U.S. 11 (1905) Casarett D, Ross LF: Overriding a patient’s refusal of treatment after an iatrogenic complication. N Engl J Med 336:1908–10, 1997[Free Full Text] Casarett D, Stocking CB, Siegler M: Would physicians override a do-not-resuscitate order when a cardiac arrest is iatrogenic? J Gen Intern Med 14:35–8, 1999[Medline] Cohen CB, Cohen PJ: Do-not-resuscitate orders in the operating room. N Engl J Med 325:1879–82, 1991[Medline] Reeder JM: Do-not-resuscitate orders in the operating room. Assoc Periop Reg Nurses J 57:947–51, 1993 Walker RM: DNR in the OR: Resuscitation as an operative risk. JAMA 266:2407–12, 1991[Abstract] Hargrave v. Vermont, No. 2:99-CV-128 (D. Vt. filed Oct. 11, 2001) Shapiro v. Thompson, 394 U.S. 618 (1969) Dandridge v. Williams, 397 U.S. 471 (1970) Fullington v. Shea, 404 U.S. 963 (1971) Schweiker v. Hogan, 457 U.S. 569 (1982) Mem’l Hosp. v. Maricopa County, 415 U.S. 250 (1974) Appelbaum PS: In reply: Hargrave v. Vermont and the quality of care. Psychiatr Serv 55:1067–8, 2004[Free Full Text] Swartz MS, Swanson JW, Ferron J, et al: Psychiatrists’ views and attitudes about psychiatric advance directives. Int J Forensic Ment Health 4:107–17, 2005 Srebnik D, Brodoff L: Implementing psychiatric advance directives: service provider issues and answers. J Behav Health Serv Res 30:253–68, 2003[Medline] Swanson JW, McCrary SV, Swartz MS, et al: Overriding psychiatric advance directives: factors associated with psychiatrists’ decisions to preempt patients’ advance refusal of hospitalization and medication. Law Hum Behav [available currently in online publication at: http://dx.doi.org/10.1007/s10979-006-9032-1]. Accessed August 24, 2006
J Am Acad Psychiatry Law 34:3:402-405 (2006) Copyright © 2006 by the American Academy of Psychiatry and the Law. This Article ANALYSIS AND COMMENTARY
Commentary: The Climate for Physician Adherence to Psychiatric Advance Directives Robert Bernstein, PhD
Dr. Bernstein is Executive Director, Bazelon Center for Mental Health Law, Washington, DC. Address correspondence to: Robert Bernstein, PhD, Bazelon Center, 1101 15th Street, NW, Suite 1212, Washington, DC 20005. E-mail: firstname.lastname@example.org
Factors that may be significant in rationalizing physician overrides of psychiatric advance directives (PADs) are not only features of individual clinical scenarios, but also are artifacts of the faltering mental health system being navigated by both provider and patient. This system, frequently viewed as hostile to consumer choice and increasingly focused on reacting to recurrent crises, is not predisposed to accepting proactive, person-centered measures such as PADs. In fact, PADs may hold great promise in improving clinical outcomes and even reducing system costs. But to realize the full potentials of PADs requires that providers understand their roles in challenging or perpetuating problems in the larger mental health system.
In evaluating the susceptibility of psychiatric advance directives (PADs) to override by physicians, Swanson et al.1 discovered the chilling irony that a measure intended to advance personal choice may ultimately sustain or even bolster professional control. Their analysis of various legal and practice considerations reveals a host of justifications that can be invoked during a period of temporary incapacity, to supplant the expressed wishes of individuals with the expert decisions of health care professionals. Certainly, it would be naïve to deny the reality of situations where meaningful and responsible emergency interventions may conflict with an individual’s treatment preferences previously expressed through a PAD. In such instances, physician expertise may be crucial to avoid serious harm to self or others. On the other hand, it would be equally naïve to deny the reality that mental health systems charged with serving the people most likely to have executed PADs—those diagnosed with so-called serious mental illnesses and vulnerable to recurrent psychiatric crises—carry a tradition of entrenched practices that dismiss, ignore, or even oppose personal choice when they do not comport with professional recommendations.2 In their study of factors influencing PAD overrides, Swanson et al.1 frequently (and properly) compare PADs to medical advance directives and frame a good deal of their analysis in the context of three criteria formulated by Brock3 in reference to physician overrides of patients’ directives in physical health care. These apply to situations: (1) where there are good reasons to question whether an advance directive accurately reflects the individual’s preferences; (2) when there is a conflict between the advance directive and the current interests or personal identity of the individual; and (3) when the interests of others may warrant an override.
When translated to the arena of mental health care, these scenarios can have special implications that favor the individual’s decision-making. For example, as Swanson et al.1 note, one ironically positive consequence of living with recurrent crises, as do many people who have serious mental illnesses, is that personal preferences expressed in PADs may be based on direct knowledge of how emergency interventions have transpired in the past. In this sense, individuals’ instructions for crisis responses contained in PADs may be far less hypothetical than those for medical or end-of-life care. Nevertheless, this is no guarantee that physicians will readily accept the validity of individuals’ preferences for psychiatric treatment. The authors find that when applied to mental health care, consideration of these criteria may, in one way or another, embolden physicians to apply their own judgments over preferences expressed through a patient’s PAD.
The examination by Swanson et al.1 of factors that might rationalize overrides occurs largely on the level of the physician and the individual patient. On their face, these scenarios illustrate how complicated best-practice decision-making may be for a physician treating an individual in crisis who has expressed preferences that diverge from the professional’s recommendations for mental health treatment. However, to assume that these predicaments are inevitable aspects of psychiatric care for people with diagnosed serious mental illnesses would ignore the reality that, in some very significant ways, they are artifacts of the larger mental health system being navigated by both the patient and the professional.
The elephant in the room, bluntly described by the President’s New Freedom Commission on Mental Health, is that the nation’s mental health system is “in shambles.”4 To a startling degree, public mental health myopically concentrates on immediate crises affecting people with long-term disabilities. Not even doing that with particular success, the system produces remedies that create and tolerate shameful outcomes such as cycles of re-institutionalization, homelessness, and incarceration. Indeed, having carefully examined the delivery of mental health services in this country, in its final recommendations the New Freedom Commission found it necessary to articulate such rudimentary elements as the need for mental health services to be individualized, to reflect the goals and preferences of the person being served, and to convey a sense of hope and recovery.5 The commission concluded that the mental health system is so askew that to achieve these fundamentals will require nothing short of a “transformation.”
Physicians’ consideration of PADs, both conceptually and in direct clinical practice, cannot be disaggregated from these larger realities. Given the state of the nation’s mental health care, it seems safe to assert that many individuals who are, or should be, served by these systems go into crises needlessly. Meaningful community-based services and supports would obviate the need for their PADs to be activated in the first place, thus making the dilemmas presented by Swanson et al.1 uncommon.
Taking the world as we now find it, mental health emergencies do occur with great regularity, and physicians may be routinely confronted with the problematic scenarios discussed by Swanson et al.1 Each of these scenarios carries the imprint of larger systemic failure in mental health care. While the realities of crisis care may oblige physicians to take some immediate action—honoring advance directives, superseding them, or finding some middle ground—failing to attend to the broader factors bringing about these dilemmas simply replicates the short-sightedness that is a hallmark of today’s faltering mental health system. In short, the challenge is whether physicians react to PADs in ways that perpetuate the problem or become part of the solution.
Brock’s3 first two criteria are closely intertwined, relating to the physician’s doubts that instructions expressed through an individual’s PAD accurately reflect that individual’s wishes, either at the time the PAD was executed or (per Brock’s second criterion) in light of major subsequent changes in the individual’s personal identity. Despite the reality that these preferences may have been informed by an individual’s past experiences in mental health crises, as Swanson et al.1 explain, a physician may feel challenged when an individual with a refractory crisis who has not actually experienced a particular therapy refuses this intervention via a PAD. They envision the physician second-guessing the PAD by asking, “Would this person really have wanted to forego the best—and perhaps only—remaining effective treatment option?” In this scenario, a more central clinical question that acknowledges the mental health system’s responsibility to its consumers may be: “Why don’t I know whether this individual, who has a history of mental health crises, would want to forego the best, and perhaps only, effective treatment option?”
The short answer is that, notwithstanding reams of treatment notes and other clinical records, the mental health system often knows very little about the individuals it serves, even its long-standing consumers. Clinical relationships in public mental health, both in hospital and community contexts, tend to be quite transient. Even on the diagnostic level, labels commonly flip-flop among various major mental illnesses. What passes for “therapy” in the public system is frequently little more than a discussion of medication compliance and a review of clinical symptoms. While there is a push to adopt more person-centered approaches,6,7 for these approaches to take hold meaningfully in practice will require both a culture change and an allocation of resources sufficient to support something more than superficial contact between consumer and provider. As it stands, unless the individual has designated a spokesperson via the PAD, the physician may have a difficult time turning to professionals who routinely serve the individual to discern what the individual would actually prefer and who that person is. Of course, any determination of a PAD’s validity, given significant changes in an individual’s identity, presupposes an understanding of who the person is in the first place and what factors guide that individual’s decision-making.
The likelihood that PADs may not explicitly address foreseeable emergency situations in many ways speaks to the reactive stance of public mental health services and their inattentiveness to consumers’ best interests.8 One would expect that between crisis points mental health providers have discussed the benefits of completing advance directives with the individuals they serve and that many consumers with PADs have made them known to providers. Recognizing that the whole intent of an advance directive is to be proactive, these providers should feel some responsibility to review various eventualities with the individual and encourage documentation of personal preferences in ways that will increase the likelihood that PADs will be understood and honored. To the extent that these interactions do not routinely occur, the stage is set for the scenarios presented by Swanson et al.1
The third scenario contemplates that individuals’ PADs may be superseded in recognition of “other interests,” broadly encompassing everything from physician liability to the well-being of the family and the needs of society. When public safety is the primary “other interest,” there is a long-standing, if still contentious, discourse about the interface between mental health and the legal system and individual rights that may inform physicians’ thinking. As a practical matter, Swanson et al.1 note that civil commitment may trump instructions contained in an individual’s PAD when the dominant presenting issue is physical safety. The authors also note some less discussed “other interests” that may rationalize overrides of individuals’ directives, including the expenditure of limited resources and prudent management of taxpayer dollars. Referencing the Hargrave decision,9 Swanson et al.1 point to the extreme situation of an individual whose PAD refuses all psychiatric medications, thereby protracting hospitalization. They predict limited tolerance for directives that may incur new costs, including the expense of inpatient care that becomes essentially custodial as a result of individual preferences.
The larger view, of course, is that mental health and related systems are hardly models of efficiency in their encounters with people likely to have PADs. Beyond the human impact of these outcomes, cyclical hospitalizations, incarceration, and even the needless dependency bred by a lack of rehabilitative services for people with serious mental illnesses all entail substantial waste of taxpayer resources across many public systems. In some instances, outmoded state psychiatric hospitals have remained open not out of clinical need, but because they are large employers and political pressure works to avert their closure.10 Against this backdrop, cost arguments invoked with regard to honoring PADs make a statement about the priority afforded consumer choice as compared with sometimes highly questionable “other interests.”
In many respects, the system’s record of disregard for individual preferences, sometimes manifest as outright coercion, has helped to perpetuate the dysfunction noted by the New Freedom Commission. Far before PADs appeared on the horizon, perceptions that the system was hostile to personal choice fomented a strong reaction among mental health consumers seeking to assert self-determination.11,12 While reflecting diverse viewpoints and aspirations, mental health consumerism has reacted to disempowering tactics in ways that are sometimes blatantly hostile to psychiatry itself.13 Given that a sense of control over one’s life has long been conceptualized as a core aspect of psychological health, it might be expected that the mental health system would be jarred by such assertions.11 But reverting to its incongruous defaults, the mental health establishment has generally avoided self-critical reflection on its failure to engage the people it is charged with assisting.7 Rather, it has been prone to create new pejorative labels for these consumers, such as “hard to serve,” “non-compliant,” or “lacking in insight.”
What is unknown at this point and has potentially significant implications for societal interests, economic and humanitarian, is whether the experience of having one’s PAD honored during a mental health crisis may ultimately foster trust and engagement. An amicus brief filed in Hargrave by 18 former state mental health commissioners and many disability organizations suggested just that, pointing to the ways PADs can promote therapeutic alliances between consumers and their physicians.14 Ultimately, positive experiences with PADs may show important clinical and economic benefits that mitigate a broad array of “other interest” concerns.
Yet, the inconvenient truth is that dynamics ubiquitous in the larger mental health system, inadequate or misused resources, short-sightedness, systematized neglect, expedient reliance on coercion, and low expectations of both consumers’ and providers’ capabilities conspire against advance directives’ showing their worth in public mental health. In many ways, the system is predisposed to assume that good, scientifically grounded practice is somehow in conflict with individual rights, including the right to personal decision-making.7 From the consumer perspective, past experience with the mental health system may, on the one hand, highlight the critical importance of PADs and, on the other hand, recognizing the system’s inclinations, give reason to view PADs warily. Certainly, a track record of PADs’ being routinely superseded will only reinforce consumers’ attitudes that the very system purporting to help them robs individuals of dignity and a sense of control over their own lives. And that would be very sad.
Swanson JW, McCrary SV, Swartz MS, et al: Superseding psychiatric advance directives: ethical and legal considerations J Am Acad Psychiatry Law 34:385–94, 2006[Abstract/Free Full Text] Tomes N: The patient as a policy factor: a historical case study of the consumer/survivor movement in mental health. Health Affairs 25:720–9, 2006[Abstract/Free Full Text] Brock DW: Trumping advance directives. Hastings Center Report 21:S5–6, 1991[Medline] President’s New Freedom Commission on Mental Health: Interim report of the President’s New Freedom Commission on Mental Health: Letter to the President. Washington, DC: U.S. Department of Health and Human Services, 2002, p x President’s New Freedom Commission on Mental Health: Achieving the promise: transforming mental health care in America. Final report. Washington, DC: U.S. Department of Health and Human Services, 2003 Bazelon Center for Mental Health Law: A new vision of public mental health: an act providing a right to mental health services and supports. Washington, DC: Bazelon Center, 2002 Bracken P, Thomas P: Postpsychiatry: a new direction for mental heath. BMJ 322:724–7, 2001[Free Full Text] Bazelon Center for Mental Health Law: Disintegrating systems: the state of states’ public mental health systems. Washington, DC: Bazelon Center, 2001 Hargrave v. Vermont, 340 F.3d 27 (2nd Cir. 2003) Becker FW: The politics of closing state mental hospitals: a case of increasing policy gridlock. Community Ment Health J 29:103–14, 1993[Medline] Bernstein R: A seat at the table: trend or illusion? Health Affairs 25:730–3, 2006[Abstract/Free Full Text] Chamberlin J: On Our Own: Patient-Controlled Alternatives to the Mental Health System. New York: Hawthorne Books, 1978 Rissmiller DJ, Rissmiller JH: Evolution of the antipsychiatry movement into mental health consumerism. Psychiatr Serv 57:863–6, 2006[Abstract/Free Full Text] Brief of amicus curiae of 18 former state mental health commissioners, the National Mental Health Association, and others in support of the appellees, filed in Hargrave v. Vermont, p 28
http://www.jaapl.org/cgi/content/full/34/3/398#R1 J Am Acad Psychiatry Law 34:3:398-401 (2006) Copyright © 2006 by the American Academy of Psychiatry and the Law. ——————————————————————————–
ANALYSIS AND COMMENTARY
Commentary: Toward Resolving Some Dilemmas Concerning Psychiatric Advance Directives George Szmukler, MB, BS, MD, FRCPsych and John Dawson, LLM George Szmukler is Dean, Institute of Psychiatry, King’s College London, and Consultant Psychiatrist, South London and Maudsley NHS Trust, London, UK. Mr. Dawson is Professor of Law, Faculty of Law, University of Otago, Dunedin, New Zealand. Address correspondence to: George Szmukler, MB, BS, MD, FRCPsych, Institute of Psychiatry, King’s College London, De Crespigny Park, London SE5 8AF, UK. E-mail: email@example.com
Dilemmas about when psychiatric advance directives (PADs) should be overridden are complicated by conflicting legal frameworks that may nonetheless operate concurrently—a legal scheme based on decision-making capacity (or competency) set against a legal scheme based on civil commitment, in which the latter may “trump” the former. A single statute in which the strengths of both schemes are “fused” may be possible. There is evidence that the promise of PADs in enhancing patients’ control over their treatment can be achieved without legislation for PADs and where civil commitment is given legal precedence. An example is the “joint crisis plan” in which, through a negotiation facilitated by an independent third party, a joint agreement is reached between patient and service provider about what treatment should be given when, as a result of a relapse of mental illness, the patient loses the ability to make treatment decisions. This clinical instrument may significantly reduce later involuntary treatment.
Swanson et al.1 provide a most interesting exploration of the grounds for overriding psychiatric advance directives (PADs), both ethical and legal. We will comment on three aspects of advance directives that arise from their paper: first, some issues in law; second, the place of involuntary treatment within conflicting legal frameworks; and third, alternative forms of advance statements that would not prevail over clinicians’ powers under civil commitment legislation, yet may still prove effective. By way of introduction, we should say that we work in jurisdictions where there is little doubt that PADs would be trumped by civil commitment legislation and where PADs are therefore not often made. The Mental Capacity Act 2005 in England and Wales,2 in which advance refusals are given statutory force, excludes the treatment of mental disorders in those domains where the Mental Health Act of 19833 is intended to operate; that is, when a patient objects to treatment that is deemed necessary by clinicians in the interests of the health or safety of the patient or for the protection of others. Although many have argued that the British Government’s proposed reform of mental health legislation for England and Wales should include an incapacity, incompetency, or impaired decision-making criterion, which would in turn be likely to enhance the efficacy of PADs (or “advance statements”), so far this proposal has been rejected. (For example, see Mental Health Alliance 2006,4 an association of more than 70 organizations opposed to the recent Mental Health Bill 2004,5 which includes the Royal College of Psychiatrists, the British Psychological Society, MIND, and the British Association of Social Workers.)
Questions of Law
We are surprised at the discretion apparently extended to American clinicians to override a patient’s stated wishes if they violate “accepted standards of care.” As Swanson et al.1 state, overrides based on clinical discretion threaten to undermine the fundamental basis of a PAD—that is, the idea that the PAD represents evidence of informed consent to future treatment, made by a patient when he or she has capacity, to be implemented later when capacity is compromised. What trust can patients have in the process if doctors have such discretion to override their decisions?
Although we are not American lawyers, we consider it possible that the authors have misconstrued the effect of “immunity” clauses of the kind included in the new Pennsylvania PAD legislation. In our view, immunity clauses should not be viewed as conferring a power on clinicians to treat unwilling patients without their consent, because immunity clauses are not power-conferring provisions at all. We believe the authors are making an error in not distinguishing clearly between PADs involving requests for future treatment and those involving refusals of future treatment. The former can clearly be disregarded by clinicians when the request is for nonstandard treatment, as no such request should be permitted to force a clinician to provide treatment against his or her better judgment. With regard to valid advance refusals, however, the matter is quite different. We believe that a clinician could only treat a patient involuntarily who had issued such a refusal when the clinician had a clear legal power to do so—conferred, for example, through civil commitment legislation—which could be relied upon to trump an advance directive.
Clauses conferring immunities on clinicians in advance directive statutes should not be read as conferring any such power of involuntary treatment: first, because immunity clauses are not directed at that situation, but at inappropriate requests for future treatment; second, because no legislation should be read to confer a power of involuntary treatment unless that meaning is abundantly clear, as a general constitutional principle; and third, because to read an immunity clause to confer such a power could produce the absurd outcome that a person who executed a PAD refusing treatment could end up having lesser rights to refuse treatment than those who have not completed an advance directive at all.
The decision in Hargrave v. Vermont6 might therefore be criticized if it takes the position that even a power of treatment derived from a civil commitment statute cannot trump a valid advance refusal. But it could still be considered a perfectly sound decision to the extent that it supports the general principle that only clear powers provided by law can authorize involuntary treatment of objecting persons. An advance directive refusing future treatment is simply a valid way for a person to indicate an objection in advance.
Involuntary Treatment in Conflicting Legal Frameworks
At a conceptual level, the content of a PAD should be considered just as one would a contemporaneous treatment request by the patient. The following questions would then arise:
As in a contemporaneous request, does the patient have the necessary information to make a treatment decision? In the case of a PAD, this translates into the question of whether the patient foresaw the present circumstances sufficiently accurately at the time the PAD was formulated.
As in the case of a contemporaneous request, a PAD seeking an inappropriate or unavailable treatment would not be met; or a request for a more expensive treatment option would be considered, but would not necessarily be met.
In the case of an apparently imprudent contemporaneous treatment decision, attention would be drawn to the patient’s capacity (or competence) to make treatment decisions. Thus, if a PAD has been made, one would similarly ask whether the patient clearly had capacity at that time. Furthermore, the more serious the decision, the stronger the evidence that may be required that the patient did have capacity. How can the clinician now be satisfied that this was so, then? This consideration would suggest that the patient’s capacity at the time of making a PAD needed some form of assurance, with an added degree of rigor if there were a risk of serious harm.
Where there is a risk of suicide, the approach to a PAD treatment refusal would be the same as a contemporaneous treatment refusal. How should we respond to a high risk of suicide in a patient who retains decision-making capacity? If it were the case that the state’s interest in preventing suicide were to override contemporaneous, competent treatment refusals, the same would apply to a PAD. Similar considerations would apply where there is a risk of serious harm to others (except that there is an alternative regime that might be called on: the criminal justice system).
But there is a problem here. These questions make sense when the framework for contemporaneous decision-making mirrors that for PADs. But that is not the case. Psychiatrists, faced with a patient who is rejecting treatment and where involuntary treatment (usually involving hospitalization) is being considered, do not need in the majority of jurisdictions to assess the patient’s decision-making capacity. Contemporaneous decisions in psychiatry are made within a legal framework based on civil commitment, whereas PADs derive from a framework based on decision-making capacity. At least in the United Kingdom and Australasia, the former regulates treatment not on the basis of the patient’s capacity to make decisions, but on clinicians’ (or judicial) judgments that the patient meets the civil commitment criteria, which are usually based on the presence of serious mental disorder and a significant threat of harm to the patient or others. The incapacity (or incompetency) scheme, on the other hand, is the framework applied in other areas of medicine, with psychiatry being the exception. This framework privileges a patient’s autonomy in a way that civil commitment legislation does not. Patients, provided they have capacity, are allowed to refuse treatment, even if the outcome may appear to the clinician to be dire, yet avoidable. The separate cultures of the two legal frameworks contribute to the tense marriage described by Swanson et al.1 The bizarre, and ethically problematic situation exemplified in Hargrave v. Vermont, in which a patient can be detained on the grounds of mental disorder, but cannot be treated because of a PAD (or because he or she retains capacity), is possible because of serious incompatibilities in the two frameworks based in separate sets of principles.
In an attempt to develop a principled and non-discriminatory approach to mental health legislation, we have proposed a “fusion” of civil commitment and capacity legislation into a single legislative scheme.7 Such legislation would cover both “physical” and “mental” disorders (because the distinction does not stand careful scrutiny). It draws on the respective strengths of both frameworks. Capacity-based legislation is based on the proposition that the justification for involuntary treatment is the lack of capacity of the patient to make treatment decisions, whatever the causative disorder, “psychiatric” or “non-psychiatric.” For the patient who lacks capacity, treatment decisions are then made by a substitute decision-maker, in the patient’s “best interests.” In England and Wales, the Mental Capacity Act of 2005, which was over a decade in gestation, provides well-honed, practical definitions of “capacity” and “best interests.” Our proposal is that the definition of capacity in that Act should form the basic justification for all involuntary treatment in a “fused” Act.
However, a weakness of capacity-based schemes is the lack of attention paid to rules governing emergency treatment, conveyance to and detention in hospital, and the use of force in securing treatment. But these are precisely the strengths of civil commitment schemes, which should therefore also be incorporated in a “fused” act. While there are some complexities concerning the management of mentally disordered offenders who retain capacity, we propose a set of principles that would balance public protection against decision-making capacity.
Alternative Forms of Advance Statement
In the United Kingdom at present, in the absence of any scope for PADs that would take precedence over the treatment powers conferred by civil commitment legislation, other approaches to taking account of patient treatment preferences have been developed. Indeed, noting the limitations of PADs in America described by Swanson et al.,1 we wonder whether many, or even most, of the ostensible advantages of PADs may be achieved in this way. A structured expression of patient preferences for future treatment can be attained via two main formats in the UK—through “crisis cards” (CCs) or “joint crisis plans” (JCPs). (Some might argue that the Care Programme Approach,8 in mental health—a standardized NHS format for assessment of needs, which includes a defined “care plan” that the patient should sign—should achieve a similar objective, but in practice the views of the service provider remain dominant.)
In the case of CCs, patients state their treatment wishes without reference to the service provider. Although advocated by some patient groups, their uptake has been very limited. In contrast, the JCP involves a particular kind of discussion (or negotiation) between the patient and the service provider and seeks agreement on what should be done in the case of relapse. Those involved in the discussion include the patient; a relative, friend or advocate; the patient’s care coordinator; the psychiatrist; and, most important, an independent facilitator—to date, a mental health professional but with no association with the clinical team. The role of the last is to ensure that the patient’s wishes are heard, and that he or she has the last word on what should be included in the JCP, including its wording.
A successful discussion results in an agreement between the patient and service provider on the terms of the JCP. The content of a JCP in fact usually comprises much more than a statement of treatment preferences or refusals in the event of a crisis. It may include early signs of relapse, what measures might be helpful or unhelpful at an early stage, what treatments have worked or not worked when relapses have become established, who should be contacted, when admission would be appropriate, drug allergies or adverse effects, and practical needs (for example, who should look after a pet if hospitalization is necessary). The JCP’s specificity of content, based on a collaborative analysis of past illness episodes, is a great strength. It is made clear to the patient and advocates that the powers of treatment provided by the Mental Health Act could prevail over the instructions contained in the JCP, but that the treatment team will endeavor to the best of their abilities to follow the agreed crisis plan. If agreement cannot be reached, a CC remains an option, or it may be stated in the JCP, with the patient’s approval, that a particular treatment preference has not been agreed on by the clinical team.
A randomized controlled trial of JCPs has now been conducted in England.9 Almost 40 percent of patients who were eligible—those with a psychosis and at least one admission to the hospital in the previous two years—took up the opportunity to complete a JCP. Had the study gone longer, more would probably have participated. The study found that the rate of compulsory admissions to the hospital was halved among patients with JCPs, a significant difference. There was a nonsignificant trend for reduced hospitalizations. Although the numbers were small, there was also a significant reduction in violent incidents in the JCP group. An earlier qualitative study found that patients who had JCPs reported that their advance statements were uncoerced, that they felt more empowered and more in control of their treatment, and they would recommend JCPs to others.10
These are promising findings. They show that patients can effectively voice their treatment wishes outside a legal framework, and that agreements between patients and service providers about future care, as in JCPs, can result in improved outcomes. The dialogue between patient and service provider is probably a critical success factor. We believe that JCPs could be a useful option even in jurisdictions where PADs are possible. They may also be able to exist alongside legislation permitting involuntary outpatient commitment, where they could be regarded as a less restrictive alternative.
Swanson JW, McCrary SV, Swartz MS, et al: Superseding psychiatric advance directives: ethical and legal considerations. J Am Acad Psychiatry Law 34:385–94, 2006[Abstract/Free Full Text] Department for Constitutional Affairs: Mental Capacity Act 2005. London: The Stationery Office, 2005. Available at: http://www.opsi.gov.uk/acts/acts2005/20050009.htm. Accessed June 2006 Department of Health: Mental Health Act 1983. London: HMSO, 1983. Mental Health Alliance. Available at www.mentalhealthalliance.org.uk. Accessed June 2006 Department of Health: Draft Mental Health Bill 2004. Norwich, UK: The Stationery Office, 2004. Available at http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsLegislation/PublicationsLegislationArticle/fs/en?CONTENT_ID=4088910&chk=6GB8PU. Accessed June 2006 Hargrave v. Vermont, 340 F.3d 27 (2nd Cir. 2003) Dawson J, Szmukler G: Fusion of mental health and incapacity legislation. Br J Psychiatry 188:504–9, 2006[Abstract/Free Full Text] Department of Health: The Care Programme Approach. HC(90)23/LASSL(90)11, 1991. A recent policy booklet, “Modernizing the Care Programme Approach,” is available at: www.dh.gov.uk. Henderson C, Flood C, Leese M, et al: Effect of joint crisis plans on use of compulsory treatment in psychiatry: single blind randomised controlled trial. BMJ 329:136–40, 2004[Abstract/Free Full Text] Sutherby K, Szmukler GI, Halpern A, et al: A study of ‘crisis cards’ in a community psychiatric service. Acta Psychiatr Scand 100:56–61, 1999[Medline]
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