In 1990, in Cruzan v. Director, Missouri Department of Health,
the U.S. Supreme Court recognized the constitutional right of a patient to refuse medical treatment. Elder law practitioners are quite familiar with the most common implementation of this proposition via traditional health care advance directives, such as living wills and designations of health care representatives. During the past 25 years, state legislatures have begun to recognize that traditional health care advance directives do not adequately deal with the management of mental health issues. Approximately half of U.S. states have enacted legislation for a new type of advance directive, generally referred to as a mental health care advance directive or psychiatric advance directive (PAD).
The content of these statutes varies widely, and there is no uniform mental health care decisions act to provide guidance to state legislatures and others wishing to put PADs in place. In addition, about half the states do not have a PAD statute, and some states only address mental health issues in passing, if at all.
The first half of this article summarizes the Uniform Health-Care Decisions Act (UHCDA) and the features of state PAD statutes. The second half summarizes support for and criticism of PADs and advocates for a model uniform PAD act.
II. Comparing Traditional Health Care Advance Directives With Psychiatric Advance Directives
In Cruzan v. Director, Missouri Department of Health,
the U.S. Supreme Court found that the patient’s wishes to end life support outweighed the state’s interest in keeping the patient alive. In the wake of Cruzan, the Patient Self-Determination Act (PSDA) of 1990 was enacted to promote health care advance directives. Mental health advocates proceeded to apply the tenets of the PSDA to individuals with psychiatric disorders, and by the late 1990s at least 10 states (Arizona, Idaho, Illinois, Minnesota, North Carolina, Oklahoma, Oregon, Texas, Utah, and Wyoming) had enacted their own PAD statutes.Traditional health care advance directives focus heavily on end-of-life health care decisions for patients who are terminally ill or permanently unconscious. These directives generally fit into three categories. Instructional directives allow individuals to provide instructions about their health care to ensure that their wishes are carried out if they become incapable of making their own decisions. Proxy directives allow individuals to designate a health care agent to make health care decisions on their behalf if they become incapacitated. Hybrid directives include both instructions and agent designations. The Uniform Law Commission created the UHCDA in 1993 to serve as a model statute for health care advance directives.In theory, the UHCDA could address all types of advance health care planning, including planning for mental health care. In practice, however, the UHCDA is most effective at providing guidance for traditional health care advance directives and end-of-life decision-making. As discussed in more detail later in this article, the UHCDA does not provide adequate guidance for handling psychiatric conditions that are cyclical in nature, such as bipolar disorder and schizophrenia.
To address this gap, about half of U.S. states have enacted legislation to create a type of health care directive specifically for individuals with psychiatric conditions and the management of acute mental health episodes. Although the terminology varies among the state statutes, these directives can be generally referred to as PADs. One author summarized the difference between traditional health care advance directives and PADs in this way: “[O]ne directive attempts to guarantee … a good death; while the other endeavors to secure … a good life.”Both traditional health care advance directives and PADs provide individuals the ability to refuse medical intervention. However, some PADs give patients the unique ability to consent to treatment even in the face of their contemporaneous refusal. This ability is documented in a specific type of PAD, often referred to as a “Ulysses arrangement,” that allows individuals to ensure that they receive treatment during an episode even if they refuse treatment at the time.The name of the arrangement comes from the story of Ulysses (from The Odyssey), who ordered his men to tie him to a mast to resist the call of the Sirens even if he fought to be set free once he was overcome by the Sirens’ cries. Similarly, an individual enters into a Ulysses arrangement while still capable of thinking clearly about treatment options and preferences. At the same time, the individual authorizes medical personnel to administer treatment even if he or she actively resists during a period of incapacity (and even if the individual lacks the capacity to give informed consent at the time of treatment).To be effective, a statute that authorizes Ulysses arrangements must include several features. First, the statute must allow individuals to decide whether the PAD will be revocable or irrevocable during periods of incapacity. Without the ability to make the PAD irrevocable under certain conditions, individuals would be unable to make a self-binding agreement and could amend or revoke the agreement while in the middle of an episode that causes them to refuse treatment.Allowing individuals to choose whether to include this provision gives them the ability to customize the PAD to fit their specific situations. This feature may increase the likelihood that individuals will execute PADs: A study cited by the Washington legislature indicated that a significant percentage of individuals did not want the ability to revoke the PAD during periods of incapacity, but “at least as many consumers do want to be able to revoke.” The study also showed that even when individuals had the ability to revoke the PAD during periods of incapacity, out of 37 crisis events, only three events resulted in an attempt to revoke, and two of those attempts affected only a specific section of the PAD.To allow an individual to form an effective Ulysses arrangement, the statute must also provide a clear procedure for making an irrevocable directive to ensure that the principal is doing so willingly and knowingly. Similar to traditional health care advance directives, the risks of coercion, undue influence, and fraud must be addressed to protect vulnerable individuals. In the absence of safeguards, health care providers may also hesitate to provide the type of care the individual would prefer.Finally, on a practical level, the ideal statute that enables Ulysses arrangements should provide the option for someone to arrange for (and the individual to consent to) transportation to a mental health facility if he or she is experiencing an episode. This ensures that the individual is able to obtain treatment and that someone is authorized to provide this transportation even if the individual resists.III. Overview of the UHCDA and State Psychiatric Advance Directive Statutes
Some states specifically cover mental health issues in their traditional health care advance directive statutes (e.g., Alaska), while others allow other types of instructions in traditional health care advance directives (e.g., Alabama). The following discussion focuses on the UHCDA and states with stand-alone PAD statutes.
A. Execution Requirements
The UHCDA allows for instructions regarding health care decisions as well as a power of attorney for health care. The comments to the UHCDA provide that such instructions include “any type of written or oral direction concerning health-care treatment,” which can be general or related to a particular condition or situation. The UHCDA also provides that while individual instructions can be oral or written, a power of attorney for health care must be in writing and signed by the principal.PAD execution requirements in most states are similar or identical to execution requirements for traditional health care advance directives: The PAD must be in writing, clearly intended to convey the principal’s wishes regarding mental health care, dated and signed by the principal, and either notarized or witnessed by one or two adults attesting to the principal’s competence and freedom from duress, fraud, and undue influence. A few states also require an agent’s signature if one is appointed in the PAD, but the directive is generally not invalid if the agent does not sign or if the agent’s signature is not properly witnessed. New Jersey allows the PAD to be supplemented by a video or audio recording.A few states have more extensive execution requirements. For example, in addition to requiring signatures of the principal and two witnesses, Louisiana’s PAD statute requires “a written psychiatric examination performed by a physician or psychologist attesting to the principal’s ability to make reasoned decisions concerning his behavioral health treatment.” Indiana requires the signature of the treating psychiatrist attesting that the principal’s preferences in the PAD are appropriate and that the principal had capacity when he or she signed the PAD. Colorado’s PAD statute lists additional items that must be included, including the principal’s demographic information, the principal’s instructions regarding various types of treatment, the agent’s signature (if one is being appointed), the agent’s contact information, the agent’s scope of authority, contact information for the principal’s health care provider, and contact information for the health care facility where the principal is enrolled, if applicable. Wyoming requires that the PAD contain the principal’s demographic information, the principal’s Social Security number, the name of the treating institution (if any), information about the attending physician, agent information, and instructions regarding “psychiatric restabilization measures” countersigned by the attending physician.Most states require that subscribing witnesses and notaries be disinterested. The definition of “disinterested” varies, but usually some or all of the following individuals are not allowed to be notaries or witnesses for a PAD:
• A person designated to make medical decisions on the principal’s behalf;
• A treating medical professional or the employees or family members of the professional;
• The owner or operator of the health care facility in which the principal is a patient or resident or the family members of such owner/operator;
• Certain family members, often including the principal’s spouse and other immediate family members, sometimes including all family members related by blood, marriage, or adoption;
• Individuals with a claim against the principal’s estate; and
• Beneficiaries of the principal’s will or an heir at law.B. Agent Appointment and Default Rules
The UHCDA and the majority of state PAD statutes allow, but usually do not require, the principal to designate an agent (sometimes referred to as a health care proxy or attorney-in-fact) and an alternate agent to carry out the principal’s instructions. A few states allow the principal either to limit the agent’s actions to specific instructions in the PAD or to allow the agent to make all mental health care decisions on behalf of the principal. The agent may need to accept the appointment in writing before he or she may serve, but the lack of an agent’s signature generally does not invalidate the rest of the directive. A few states also allow the principal to appoint a guardian or conservator in the PAD. Most states prohibit health care providers and owners, operators, and employees of health care facilities from being appointed as a principal’s agent, but some states provide for an exception if the individual is related to the principal.If a patient does not have a health care advance directive, if the directive does not designate an agent, or if the agent is not “reasonably available,” the UHCDA provides the following default list of family members who are authorized to step in: (1) the spouse, unless the couple is legally separated; (2) an adult child; (3) a parent; or (4) an adult brother or sister. If none of these individuals are available, “an adult who has exhibited special care and concern for the patient, who is familiar with the patient’s personal values, and who is reasonably available” may step in as the agent.Only a couple of PAD statutes include a similar list of default surrogates. Minnesota’s statute provides that if the principal is incapable and has not designated an agent, the principal’s “nearest proper relative” (defined as the principal’s spouse, parent, adult child, or adult sibling, in that order) is to step in to give written informed consent. New Jersey’s list comprises the principal’s legally appointed guardian (if any); a family member; the mental health care professional and psychiatric facility involved in the patient’s mental health care; and “any other person acting on the patient’s behalf.”C. Capacity Determinations
The UHCDA and most PAD statutes either (a) define capacity as the ability to understand relevant treatment options, including the risks and benefits of each option, and the ability to make and communicate mental health care decisions or (b) define incapacity as the inability to perform those tasks. A few states define capacity simply as the ability to provide informed consent to a given procedure. Interestingly, Nebraska and New Jersey’s statutes provide that the principal’s capacity is to be evaluated relative to the specific decision being made, meaning that at any given time, the principal may be deemed capable of making some health care decisions but not others.Most states require that two physicians or mental health care professionals make the capacity determination, which often must be in writing and added to the patient’s medical records. Alternatively, some states specifically provide that a court can make the determination.The UHCDA and a few state statutes provide a presumption that the principal has capacity to make a health care decision, give or revoke a health care advance directive, and designate or remove an agent. Other states include a presumption of capacity for only some of these actions. For example, Tennessee’s statute provides a presumption that a person has capacity to make mental health care decisions and to revoke a PAD but does not specifically provide a presumption related to other situations. Montana’s and New Mexico’s statutes provide a presumption that a person has capacity to make a health care decision and to create or revoke a directive. Oklahoma’s and North Carolina’s statutes provide that a physician can presume that the principal was capable at the time the PAD was created. Louisiana’s statute provides that a principal automatically regains capacity upon release from a health care facility. Washington has detailed procedures for determining and reevaluating capacity.D. When Does a Psychiatric Advance Directive Become Effective?
In most states, a PAD becomes effective either upon execution or when delivered to a health care provider. Some states explicitly distinguish between when a PAD becomes effective (i.e., the PAD is deemed valid) and when it becomes operative (i.e., the PAD takes effect). For example, Nebraska’s PAD statute provides that a PAD becomes effective upon execution but that the PAD becomes operative if the principal loses capacity (as determined by two physicians, one of whom can be designated in advance by the principal). The UHCDA is similar, providing that an agent’s authority generally becomes effective if the principal becomes incapable and the agent’s authority ends if the principal regains capacity. However, the UHCDA and four states allow the principal to define exactly when the PAD becomes operative.E. Sample Psychiatric Advance Directive Forms and Content
Some state PAD statutes include a list of items that can be included in a PAD, although most of these statutes do not require the inclusion of all the items. The majority of states with PAD statutes also provide a sample PAD form, but this form usually is not required; rather, the PAD must be in substantially the same form as the sample form. Forms vary widely and may include any or all of the following information:
• Preferences regarding psychotropic medications, electroconvulsive therapy (ECT), admission to an inpatient facility, emergency interventions, and experimental studies or drug trials;
• Selection of a physician to determine capacity or to treat the principal;
• Appointment of an agent;
• An individual’s mental health history;
• Types of interventions that work for the principal and those that do not;
• The principal’s typical reactions to certain interventions;
• Measures to help prevent the principal’s hospitalization;
• Ways that facility staff can help the principal cope with a mental health crisis; and
• The names of those who are and are not allowed to visit the principal during an episode.Some forms also include nonmedical details, such as whom to contact if a mental health crisis occurs and instructions regarding the supervision of the principal’s minor children. Many states also allow the principal to include additional instructions.F. Inpatient Mental Health Care and Intrusive Therapies
Most states allow the principal to state preferences in a PAD for different types of mental health interventions, including the use of psychotropic medications, the use of ECT, and admission to an inpatient facility. Some states’ sample PAD forms include questions about specific types of interventions that may be involved in emergency situations, such as the use of medication, seclusion, and restraints. Kentucky allows the principal to refuse specific psychotropic medications but not entire classes of medications.Some states limit an agent’s authority to consent to therapies that are more intrusive. For example, some states only allow an agent to consent to certain invasive treatments if the authority is specifically stated in the PAD. Others prohibit an agent from consenting to certain types of treatment altogether; for example, Nebraska does not allow the principal to consent to psychosurgery in a PAD or to authorize the agent to consent to it. Pennsylvania does not allow the principal to delegate the power to relinquish parental rights or to consent to psychosurgery. Some states also limit how long a PAD can authorize admission to or retention in a treatment facility (or allow the principal to limit the duration if desired). In addition to requiring the agent’s consent to inpatient admission, a few states provide specific procedures that must be followed, such as an investigation by the facility into the appropriateness of the placement prior to admission and at certain intervals.Washington’s PAD statute includes the most detailed provisions regarding the use of more intrusive interventions. The statute includes a detailed procedure for admitting a principal for inpatient treatment if the principal is incapable, the principal refuses admission, and the PAD is irrevocable during incapacity. In addition, if the principal consents to ECT and ECT is used, the ECT use and the reason for its use must be documented.G. Revocation and Expiration of Psychiatric Advance Directives
No state requires that a PAD be completely irrevocable. Some state PAD statutes specifically provide that a PAD is effective until it is revoked by the principal or by court order. Other states provide for automatic expiration of a PAD, most commonly providing for expiration after 2 years, sometimes after 3 years or 5 years, unless the PAD is amended or revoked earlier. A handful of states allow the principal to specify an expiration date. The majority of PAD statutes that provide for the automatic expiration of a PAD anticipate the possibility that the expiration period may end while the principal is incapable. In that case, the statutes generally provide that the PAD continues to be valid until the principal regains capacity. Some states also provide for the automatic revocation of the designation of a principal’s spouse as agent in the event of divorce or legal separation unless otherwise specified in the document.The UHCDA provides that the designation of an agent can only be revoked in writing, but the principal can revoke all other parts of a health care advance directive “in any manner that communicates an intent to revoke.” Some states offer multiple options for revoking a PAD, including some or all of the following: a written revocation, revocation by physical act, oral notification of the agent or a mental health care provider, execution of a new PAD, or any other act that clearly shows that the principal intends to revoke the PAD. In about half the states with PAD statutes, a revocation is effective only after it is communicated to the supervising health care provider or health care institution. A few states require that the revocation be in writing and signed by the principal and one or two witnesses. Interestingly, two states (Nebraska and Washington) provide that if a principal with capacity makes decisions that are inconsistent with the PAD, the principal waives the inconsistent provisions of the PAD, but the PAD is not automatically revoked in full.In the majority of states, a principal must be capable in order to revoke a PAD. However, there are some exceptions. Colorado allows the principal to revoke the PAD at any time, and a few states provide that the principal can revoke the PAD during periods of incapacity unless the PAD specifies otherwise. Washington allows the principal to choose whether the PAD is revocable while the principal is incapacitated. Montana allows the principal to choose whether the PAD is irrevocable during a period of incapacity, and the principal can also decide to make the PAD irrevocable for a certain amount of time after a period of incapacity.In many states, PAD revocation requirements are essentially the same as those for traditional health care advance directives. However, some states impose more stringent requirements to revoke a PAD. The revocation requirements for a traditional health care advance directive are rarely stricter than those for a PAD.H. Can a Principal’s Wishes Be Disregarded?
The UHCDA and most state PAD statutes provide that an agent has a duty to make health care decisions for the principal consistent with the instructions in the PAD. In the absence of explicit instructions in the PAD, an agent generally must act in good faith in accordance with the principal’s known wishes. If the principal’s wishes are unknown, the agent generally must make decisions in accordance with what the agent in good faith believes to be in the principal’s best interests or in accordance with the way the agent believes the principal would act.Most states require medical professionals to comply with PADs to the greatest extent possible, although the treating physician is generally allowed to take into consideration traditional medical practice and standards of care, the availability of requested treatments, and relevant law. Montana, New Jersey, New Mexico, and Pennsylvania make it clear that these considerations apply when decisions are being made by an agent, but they generally apply to situations in which a health care provider is “acting under authority of” a PAD.The UHCDA and several states provide additional exceptions that allow medical professionals to either disregard or opt out of following a principal’s wishes. For example, Colorado’s PAD statute provides that medical professionals must comply with the instructions in the PAD unless doing so “will cause substantial harm” to the principal. Other states provide explicit overrides if a court order exists or in case of emergency (generally if the principal poses an imminent threat to self or others). Louisiana’s PAD statute allows a physician or other health care provider to act contrary to an incapable principal’s expressed wishes (a) in an emergency in which the principal’s instructions have not worked and (b) if the treating physician “determines that psychotropic medication is essential” and an administrative review determines that the medication is “medically essential.” The decision to override the principal’s wishes can be valid for no more than 60 days. Indiana’s PAD statute is much more permissive, providing that the statute “does not preclude an attending physician from treating the patient in a manner that is of the best interest of the patient or another individual.”The UHCDA and most states also provide a procedure in which a medical professional who does not want, or is unable, to comply with the PAD can withdraw from treating the patient. The health care provider is generally required to notify the patient and agent of this withdrawal and note it in the patient’s file. Some states require that the provider continue to treat the patient until another medical professional agrees to provide care or to take steps to transfer care to another provider. Other states merely require that the withdrawing physician not actively impede such a transfer.I. Conflicts Between Principal and Agent
Not all states explicitly address how to deal with conflicts between a principal and an agent or between an agent and the instructions in a PAD. At the most basic level, the UHCDA and many states provide that the right of an individual with capacity to make his or her own health care decisions is not affected by the state statute or the existence of a PAD. However, at least two states allow the principal to grant the agent the authority to make decisions when the principal is capable; in that case, if the decisions of the capable principal and agent conflict, the principal’s decision overrides the agent’s.A few states provide that if a conflict exists between instructions in a properly executed PAD and an agent’s decision, the instructions in the PAD take precedence unless the PAD explicitly states otherwise. Kentucky’s PAD statute provides that an agent can override the instructions in a principal’s PAD “only if there is substantial medical evidence that failing to do so would result in harm to the grantor.” In Montana, an agent may override the wishes of an incapable principal if (a) the PAD is irrevocable if the principal is incapable; (b) the PAD authorizes the agent to make the decision that is the source of the conflict; and (c) the supervising health care provider determines that the treatment decision is “medically appropriate” and in accordance with the law.Some states provide for more formal dispute resolution mechanisms. New Jersey, for instance, provides for resolution of disagreements among parties by means of procedures established by each psychiatric facility, which may involve consulting an ethics committee, another person designated by the facility, or a court. Other states specifically provide for court resolution under certain circumstances, such as if an individual disagrees with a decision made pursuant to a PAD or if an agent does not comply with a PAD. As mentioned previously, Washington’s statute includes detailed procedures for admitting an incapable principal for inpatient treatment if the principal refuses and if the PAD is irrevocable during periods of incapacity.J. Duties and Liability of Agents and Health Care Professionals
The majority of PAD statutes provide that the treating health care professional is obligated to include a copy of a patient’s PAD or any PAD revocation of which the professional is aware in the patient’s medical record. Four states (Montana, Nevada, New Jersey, and Pennsylvania) obligate the physician to affirmatively inquire as to the existence of a patient’s PAD. Colorado, New Jersey, and Tennessee also impose a duty on health care professionals to communicate the existence of a new, amended, and/or revoked PAD to the treating physician or to a new facility if the principal is being transferred.Most states limit the liability of an agent who acts in good faith pursuant to a PAD. This generally includes protection from criminal liability, civil liability, and professional disciplinary action. However, Pennsylvania imposes civil liability on an agent who willfully fails to comply with a PAD.Most states protect medical professionals from criminal liability, civil liability, and/or professional disciplinary action as long as they act in good faith when following the agent’s instructions or when refusing to follow the PAD or the agent’s instructions. Three states also absolve a medical professional from liability for not following a PAD if the professional is unaware of the PAD’s existence. Hawaii and North Carolina specifically address the issue of informed consent, providing that health care providers will not incur liability arising out of a claim to the extent that the claim is based on an alleged lack of informed consent. Four states also limit liability for a physician’s determination of a principal’s capacity (or lack thereof). However, Hawaii, New Jersey, and New Mexico affirmatively impose liability, such as disciplinary actions for professional misconduct or fines, if a mental health care professional or psychiatric facility intentionally fails to act in accordance with the law regarding a PAD.K. Criminal Liability
Several states impose criminal liability under certain circumstances, such as if a person (a) intentionally alters, conceals, destroys, or falsifies a PAD or revokes a PAD without the principal’s consent; (b) coerces or fraudulently induces a person to execute, revoke, or not execute a PAD; or (c) falsifies or forges a PAD or an amendment or revocation thereof. Under its PAD statute, Kentucky specifically imposes criminal liability for causing or conspiring with another to cause unwarranted hospitalization of a principal or for denying an individual the rights established in the statute. Kentucky also imposes criminal liability for violating the confidentiality of an individual’s mental health record. The majority of states prohibit making the execution, amendment, or revocation of a PAD a condition for obtaining health insurance, life insurance, or similar coverage or a condition for obtaining health care. Most states do not explicitly list a penalty for this conduct, but New Jersey and Oklahoma impose criminal liability in such situations.IV. The Case for Psychiatric Advance Directives
A. Traditional Health Care Advance Directives Fail to Adequately Cover Mental Health Issues
One of the main reasons advocates believe that PADs are necessary is because traditional health care advance directives are not suited for handling mental health issues. At a basic level, traditional health care advance directives and PADs cover very different situations. Traditional health care advance directives are usually intended to cover end-of-life issues. In those situations, patients are unlikely to recover from illness or incapacity and may be unable to communicate their wishes to health care providers. On the other hand, PADs are generally intended to cover psychiatric conditions that are cyclical in nature, such as bipolar disorder and schizophrenia, meaning that a patient is likely to recover from a particular episode but also to experience future episodes. In addition, patients experiencing acute episodes of mental illness may actively resist certain mental health treatments that they would otherwise approve. Dealing with the very different situations addressed by traditional health care advance directives and those addressed by PADs require different approaches.
Traditional health care advance directives generally take effect only if the principal becomes terminally ill or permanently unconscious, which means that such directives would not be triggered during an acute episode of mental illness. PADs, on the other hand, are triggered under very different circumstances and allow principals to use their prior treatment experiences to inform the type of care they receive in the future.In the absence of a PAD, a mental health care professional may be hesitant or unable to intervene even if the professional has worked with the individual before and knows what is likely to be the most effective treatment. In that situation, the only viable alternative may be to have the individual involuntarily committed. However, criteria for involuntary commitment are often very strict, given the restrictions on liberty involved. Consequently, there can be a drastic divide between when an individual becomes incapable of making his or her own health care decisions and when an individual meets criteria for mental health intervention. Given that early intervention can often make a considerable difference in an individual’s prognosis, not to mention his or her relationships, employment, safety, and general well-being, the inability to intervene early can have a serious detrimental effect.Another shortcoming of traditional health care advance directives is that a principal can generally revoke the designation of an agent and all or part of the directive at any time, regardless of the principal’s capacity. Therefore, the UHCDA and most traditional health care advance directive statutes do not allow principals to form Ulysses arrangements nor do they provide guidance to agents or health care providers on how to handle treatment when such agreements are in place. PADs allow principals to document informed consent, which protects health care providers and increases the likelihood that principals will get the care they want and need.Lastly, traditional health care advance directives, by their nature, force the principal to confront the prospect of permanent incapacity and death. Some critics point out that having to face end-of-life decisions at the same time as mental health care decisions could be confusing or upsetting and may discourage those with mental illness from creating advance directives at all.B. Advantages of Psychiatric Advance Directives
As discussed previously, one major advantage of PADs is that they help principals avoid “coercive interventions” and the trauma of involuntary inpatient placement. One study found that 82 percent of respondents to a survey about treatment experiences reported “coercive care that was very disturbing to them.” Interventions included being handcuffed; transported by the police; involuntarily committed, secluded, or restrained; and forced to take certain medications.A Ulysses arrangement or PAD can help prevent such drastic measures, allowing principals to communicate the best way to intervene early and to authorize less intrusive interventions (or prohibit very intrusive interventions) in advance. This improves the likelihood that principals will obtain treatment early enough to prevent the need for involuntary commitment and avoid a commitment hearing or guardianship proceeding, which can be dehumanizing and stigmatizing; police interactions, which can be dangerous; and other negative outcomes, such as harming others.
Another advantage of PADs involves continuity of care. Those with chronic illnesses covered by traditional health care advance directives are more likely to be treated by the same health care professionals throughout their illness, whereas those who experience acute episodes of mental illness may need treatment in unfamiliar settings, such as in hospitals or jails. Many PAD statutes and sample PAD forms allow individuals to specify their preferred health care providers, indicate which interventions have and have not worked in the past, and provide additional context that may improve treatment. Accordingly, PADs may allow individuals to get care from their usual mental health care providers, who are already familiar with their conditions and medical histories. In the absence of being treated by their usual physicians, individuals are nevertheless more likely to receive consistent care in accordance with their wishes if a PAD is in place and enforceable wherever they receive treatment.
In addition, similar to the process of creating traditional health care advance directives, the process of creating comprehensive PADs can help principals consider exactly what their wishes are and communicate those wishes to loved ones. One commentator pointed out that “[m]erely contemplating the possibility of mental illness may cause a person to take preventive measures.” As a result, the process of creating a PAD may prevent future crises, thereby improving mental health outcomes. Knowing that a PAD is in place and that his or her wishes will be respected during a crisis may reduce an individual’s stress and anxiety that can exacerbate mental illness.Some advocates also note another potential benefit of creating a PAD. During PAD creation, the treating psychiatrist explains treatment options to the principal (including risks, benefits, and alternatives) and the principal has input into his or her own care, whether via a PAD, an agent, or both. Thus, the PAD creation process results in a conversation that involves the principal in his or her own care even if the principal ultimately can be overruled under certain circumstances.As described previously, PADs also give the principal increased specificity and control. PADs can include everything from the principal’s medication preferences to who should take care of the principal’s minor children during an episode of mental illness. This empowers the principal and helps avoid the infantilization that often comes from institutionalization. A principal actively involved in his or her treatment plan is also more likely to follow the plan and prevent future episodes. Principals might be more willing to reach out for help in the early stages of an episode if they know that their wishes are likely to be followed.PADs also may improve treatment simply because they provide additional information about which treatments work and how the principal tends to react to certain treatments, information that is particularly helpful if the treating physician has never had contact with the principal. For example, Washington’s sample PAD form includes the following details:
• Preferences for medications, including those to which the principal explicitly consents and does not consent;
• Interventions to try prior to hospitalization, such as allowing the principal to call someone or having someone call the principal, arranging for the principal to stay overnight with someone, or taking the principal to a health care provider for medication management;
• Interventions to be tried prior to using seclusion or restraint, such as holding a one-on-one conversation to talk the principal down, providing additional medication, offering privacy, providing a distraction, or offering a neutral person to settle a dispute;
• The order in which the principal would prefer seclusion, restraint, and emergency medications to be tried;
• Preferences about who can visit the principal in a facility; and
• Open-ended instructions about what may help the principal avoid hospitalization, how the principal generally reacts to hospitalization, and how hospital staff can help the principal.
PADs have the potential to decrease the cost of health care and the use of public resources. The legislative history of the Washington PAD statute cited a study of more than 100 participants in which, after 37 crisis events, 11 PADs “specified alternatives to hospitalization which saved a significant amount of money.” Earlier intervention can lead to improved health outcomes, which in turn decreases treatment costs borne by the patient, health insurance, and public assistance programs. Reducing the need for commitment hearings preserves public funds expended on judicial and public defender resources. In addition, taxpayer money is saved if patients get help from a facility of their choosing (perhaps a private hospital) and if stable patients who can work have health care provided by an employer or another source rather than Medicaid or another form of public assistance.C. Criticism of Psychiatric Advance Directives
Criticism of PADs, and Ulysses arrangements in particular, falls into several categories. Some believe that Ulysses arrangements are paternalistic and compromise individual autonomy, either because these arrangements allow the state to intervene in a person’s decisions even when he or she is not a danger to others or because they allow a person’s “past self” to dictate what will happen to the person’s “present self.”Critics also worry that PADs pose an increased risk of undue influence on and abuse and coercion of patients by doctors or family members, such as a situation in which family members coerce a patient into forming a Ulysses arrangement that is used to intimidate the patient into complying with certain treatments. Relatedly, some argue that Ulysses arrangements lack necessary procedural due process protections because an agent can force the patient to be hospitalized or treated even if he or she does not meet commitment criteria.Other concerns focus on the issue of informed consent. Some critics believe that the consent given in a PAD is invalid because the consent is not contemporaneous with the treatment. Some worry about the risk of unanticipated consequences resulting from the principal having a change of heart or failing to anticipate all possible situations. Of course, this is a more serious issue when the PAD directs (rather than refuses) a specific treatment, particularly if the treating physician is not the one who counseled the principal about the risks and benefits when the PAD was executed or if the risks and benefits have changed significantly. To alleviate this concern, some argue that the PAD should be ineffective once the principal is deemed incapable, but that would defeat the purpose of a PAD for many, if not most, individuals with mental illness.There is some concern about ensuring that a principal is capable when he or she executes a PAD, particularly when the state’s PAD statute provides for a presumption of capacity. Accordingly, some see a need to require an explicit competency assessment at the time of PAD execution and third-party witnesses to ensure that the principal is capable and that there is no undue influence or fraud. On the other hand, some commentators express concern that if the treating psychiatrist is involved in the initial competency assessment, the psychiatrist could exert undue influence if he or she influences a patient to do what the psychiatrist sees as best rather than what the patient wants.D. Responses to Criticism
PAD advocates have responded to the criticism in several ways. They have pointed out that allowing individuals to execute PADs is actually a form of self-paternalism as opposed to state paternalism. They argue that it respects individual autonomy and, in fact, not allowing individuals to form Ulysses arrangements is a form of state paternalism because it prevents individuals from doing what they want. In addition, some believe that the past self is still the “most logical, least paternalistic person to dictate treatment” for the present self. Judy A. Clausen, a visiting associate professor of law at the University of Florida Levin College of Law, has written several articles on the topic.
Regarding due process concerns, Clausen states that “the liberty deprivation involved in implementing a Ulysses arrangement is minimal compared to the deprivation of freedom involved in involuntary commitment.” Indeed, a patient with a PAD provides advance consent in many situations, but those who are involuntarily committed often do not get that opportunity. However, Clausen believes that PAD statutes should provide some formal protections, including limiting the length of hospitalization; requiring doctors to follow a capable patient’s wishes; requiring express written consent before administering treatment in the face of episode-induced refusals; prohibiting patients from using Ulysses arrangements to dictate use of ECT and psychosurgery; and allowing patients to seek injunctive relief from the courts if necessary.To improve informed consent and guard against unanticipated consequences, Clausen suggests ongoing dialogue between doctors and patients and the continual updating of directives. She also posits that the use of broad language in PADs and the ability to appoint an agent who can react to changing circumstances help make PADs more flexible. She advocates for the automatic expiration of Ulysses arrangements (but not revocable mental health advance directives) after a certain number of years. In Clausen’s view, allowing patients to give informed consent in advance is preferable to depriving them of the ability to provide consent at all. At the very least, automatic expiration for a Ulysses arrangement ensures that the consent given is relatively recent. In addition, there may actually be a strong argument that informed consent is valid in PADs with Ulysses arrangements: “Informed consent in the directive is valid because Ulysses arrangements are only appropriate” for those who have cyclical illnesses and have therefore experienced similar episodes before.Bruce J. Winick, who was a professor of law and professor of psychiatry and behavioral sciences at the University of Miami Miller School of Medicine before he died in 2010, responded to these concerns somewhat differently, positing that it is unusual for there to be totally new treatments (although the likelihood of this happening depends heavily on the duration of the period of incapacity). He pointed to the importance of specifically limiting liability in the PAD statute or requiring that the principal appoint an agent.Of course, automatic expiration of PADs presents its own challenges. Principals must be aware that their PAD has expired or must at least consider the possibility. As many elder law practitioners can attest, clients have a hard enough time updating wills and incapacity documents to account for major life changes. A judgment has to be made as to whether it is better for a principal to have an out-of-date PAD or no PAD at all.
V. The Case for a Uniform Psychiatric Advance Directive Act
In Making the Case for a Model Mental Health Advance Directive Statute, Clausen explores the shortcomings of both the UHCDA and most state PAD statutes regarding the management of mental health issues. She believes that although PAD statutes generally prohibit principals from revoking PADs if they become incapable, this is not enough to enable individuals to form Ulysses arrangements, wherein they authorize treatment during periods of incapacity even if they resist treatment at the time. One of the biggest shortcomings is that most state PAD statutes fail to provide specific procedures for treating individuals against their wishes expressed in a PAD; therefore, clinicians may be less likely to honor these wishes without an explicit waiver of liability in the PAD statute. In addition, the presumption of capacity included in many statutes and the ability of a capable principal to revoke PAD instructions make it more difficult to form an effective Ulysses arrangement.Clausen also believes that execution requirements in most current PAD statutes are minimal and may not provide effective protection against abuse. As discussed previously, most, if not all, states that have implemented the UHCDA have added witnessing requirements for PADs, as they have done for wills, powers of attorney, and other similarly powerful documents, to provide protection against coercion. Those with mental health issues may be “especially vulnerable to coercion because they may perceive the threat of involuntary commitment or forced administration of medication.” Clausen posits, “Ensuring that there are robust protections against abuse is even more critical in the context of Ulysses arrangements … because there is a danger that family and providers will coerce the patient into forming a Ulysses arrangement and then use the arrangement as a tool to intimidate the patient to comply with a treatment regimen.”Similarly, the ability of principals to make oral instructions and designations, as allowed in the UHCDA and some state PAD statutes, is a double-edged sword. On the one hand, it may increase the prevalence of advance directives in general because it gives principals flexibility and helps them avoid formalities that could discourage them from creating directives. On the other hand, that same flexibility could increase the likelihood of fraud, increase the potential for physician liability for false accusations, and fail to ensure that principals are capable when they put a directive in place.On a practical level, different terminology used by different state statutes can cause confusion, particularly if principals need to use their PADs in a state other than the one in which the PAD was executed. This issue is compounded by the fact that half the states have no PAD statute at all.
VI. Practical Issues and the Need for Further Improvements
One of the biggest hurdles to the formation of traditional health care advance directives is simply getting the principal to follow through and create one. The same is true with PADs. It is difficult to have conversations about sensitive topics, which could be a bigger issue in states where principals rely on their agents to communicate and carry out their wishes rather than a PAD with very detailed instructions. As one mental health care professional put it, “There is a human aversion to thinking about those situations and planning ahead.”Reported barriers to creating a PAD include not having a trusted person to name as an agent, not knowing what to put in the PAD, not understanding PADs or knowing they exist, and not knowing where to find help to complete a PAD. In addition, the need for witnesses, a notary, and sometimes a psychiatrist, plus related rules surrounding conflicts of interest, may make it difficult for people to comply with the technicalities required to execute a valid PAD.One study shows how a simple intervention can vastly improve the likelihood that an individual will complete a PAD and that the PAD will be successful. In the early 2000s, researchers at Duke University studied the impact of a “facilitated” PAD, which was created over the course of a 90-minute interview conducted by a trained facilitator. The test group, whose members created a PAD (the facilitated PAD group), was compared with a control group whose members only received a brochure, written information, and a referral to community resources. The study found that 62 percent of those in the facilitated PAD group completed a PAD compared with only 3 percent in the control group. Researchers also found that the PADs created by the facilitated PAD group were specific, clinically useful, and aligned with standards of mental health care.In later follow-ups, researchers found that the participants who had executed PADs experienced fewer crisis episodes and were more satisfied with their treatment. Even at the 2-year mark, those with PADs had experienced fewer interventions such as involuntary commitment, emergency interventions such as seclusion and restraint, and police transport.Advocates point to a need for training on the health care provider side, both for creating PADs and for following them once they are in place. In a similar vein, there is a need for better procedures for communicating PAD instructions to health care providers, particularly in a situation in which the patient is seen in an emergency room, prison, or other setting where the providers are unfamiliar with the patient. Some states have repositories for health care advance directives, but they are not necessarily well integrated with health records or otherwise readily available. The Substance Abuse and Mental Health Services Administration (SAMHSA) has suggested several possible solutions to this problem, including (a) creating wallet cards with a summary of the principal’s PAD instructions, (b) adding PAD instructions to the principal’s smartphone emergency contacts, (c) providing peer-run programs, and (d) conducting workshops. Some hospitals use chaplains to create PADs and traditional health care advance directives; it also may be possible to include PADs in required crisis planning.SAMHSA hopes that as the stigma surrounding mental health lifts, more people will voluntarily communicate about their mental health issues and ensure they get the treatment they want and need by creating PADs.
1 497 U.S. 261, 110 S. Ct. 2841, 111 L. Ed. 2d 224 (1990).