DURING A MENTAL health crisis, patients with psychiatric diagnoses tend to suffer a loss of cognitive function and decision-making faculties. Psychiatric advance directives (PADs) are designed to ensure that these patients maintain some level of autonomy over their medical decisions even if they cannot retain decision-making power during a mental health crisis. This article explores the regulatory landscape surrounding PADs, including their legal foundation and barriers to their effective use in practice.
What is a PAD?
One type of medical advance directive, PADs allow individuals to make decisions about their medical treatment and to avoid prolonged resuscitative measures if they become incapacitated. PADs are a specific subset of advance directives for individuals who suffer from frequent psychiatric episodes that erode their ability to make fully informed decisions about their medical care and treatment. With a PAD, people with a mental illness can state their treatment preferences in advance of a crisis.1
PADs come in two forms. One type documents a patient's acceptance or refusal of certain types of treatment, including specific medications or therapies. The second type authorizes a healthcare proxy to undertake medical decisions that align with the patient's wishes while the patient is incapacitated. Both PADs are used together in some cases, but the laws governing PADs vary by state. Certain states have specific legal requirements for involuntary commitment based on mental illness. For example, New York courts require a finding that a patient is mentally ill; in need of continued, supervised care and treatment; and poses a substantial threat of physical harm to self and/or others. In contrast, other states, including Louisiana, require only a finding that the individual is dangerous to self or others or is gravely disabled as a result of substance abuse or mental illness. (For additional state legal details, please see www.mentalillnesspolicy.org/national-studies/state-standards-involuntary-treatment.html.) The existence of two separate directives (one for general medical disorders and one for mental health disorders) may cause confusion in an emergency.
Typically, PADs must be witnessed and notarized when the individual is competent and able to select his or her preferred treatment choices as well as a healthcare proxy to make informed healthcare decisions on the patient's behalf if the patient becomes incapacitated.2,3 PADs and other advance directives further serve to aid practitioners and patients under their care to collaborate on mutually agreed-upon treatment options. However, advance directives cannot cover all potential emergent psychiatric developments.2,4-7
Individuals may give instructions on many aspects regarding mental health care and treatment, including medications for psychiatric treatment, preferred facilities, and the selection of a treating healthcare provider. In addition, people may document instructions regarding the use of specific mental health therapies, such as electroconvulsive therapy and participation in research and/or clinical trials.
For hospitalization, patients may designate specific preferences and approaches to care that facilitate their recovery and identify interventions that hinder their well-being. For example, they may relay a preference for management with medication rather than electroconvulsive therapy or placement restrictions (restraints). Specific directives may also include a list of permitted visitors in the acute care setting and information on the care of children or pets.5,8
As in all cases, however, PADs are subject to certain caveats as determined by medical necessity. For example, PADs cannot overrule accepted standards of medical care and may be disregarded if a patient's emergency psychiatric medical needs are not contemplated within the written directive.8
Legal foundations and legislation
The Patient Self-Determination Act enacted in 1990 motivated hospitals and healthcare facilities to put into practice programs that support the autonomy of adults who make advance directives for healthcare decisions.9-11 In addition, the Centers for Medicare and Medicaid Services declared that patients are entitled to articulate advance directives as well as have hospital staff comply with these directives. The Joint Commission stipulates that patients in behavioral health facilities must be asked whether they have completed a PAD and to document this information.12
Individuals may choose to insert a “Ulysses clause” into their directive. Named after the character in Greek mythology, the Ulysses clause authorizes healthcare professionals to disregard a specific advance directive under some some conditions (see What's in a name?).13 For example, patients who know they are likely to refuse medication when they are in a psychotic state may use the Ulysses clause to specify that they want to receive treatment even if they object at the time of crisis.14 Some healthcare professionals are uncomfortable with the Ulysses clause because it puts them in the precarious position of respecting directives expressed in the past while disregarding what the individual is currently expressing.8,11 Further, several state laws permit involuntary psychiatric treatment for a committed patient under judicial order.
Completing a PAD
Individuals considering completing a PAD should know the benefits and limitations of PADs. As previously stated, a PAD should be prepared when the individual is mentally stable and fully capable of making informed decisions regarding healthcare needs and choices.8,10 Significant decisions about mental health care can be made by most people with serious mental health disorders.15,16
Completing a PAD enables many adults with psychiatric illnesses to maintain independence during the treatment process and supports their recovery. Several steps need to be discussed so that the process is thoughtful and logical. A team approach may work best.8
An initial conversation should start with a mindful reflection of the individual's goals in treatment. For example, writing a list of desired outcomes may help the patient think things through. If any language barriers exist, a certified medical interpreter should be enlisted either in person or by phone.9 Garnering the support of trusted family members, friends, therapists, and healthcare practitioners will ensure that a patient's medical needs are clearly set out in the PAD, including any proposed deviation from standard protocols, and that family and caregivers are aware of the patient's preferences.
The next step is to select a healthcare agent (also known as a proxy or patient advocate) who can assist in determining treatment options in line with the patient's wishes, particularly in circumstances not contemplated in the patient's PAD. Laws vary from state to state—some states allow a second person as a reserve healthcare proxy in the event the first proxy is unable to serve in this role. The chosen healthcare agent should be reachable in the event of a crisis, or when a patient loses the capacity to make informed healthcare decisions.
Before completing the PAD, individuals need to review the respective laws and regulations that govern their respective states' PADs. Consultation with a lawyer with experience in preparing PADs could also be helpful. They should perform any required prerequisite steps to assign a healthcare proxy and use any standard forms provided by the state to list any desired form(s) of treatment or prohibited medications. Refer individuals to helpful resources for more information about their state's requirements (see Resources for patient education on PADs), such as information about individual state protection and advocacy agencies that can advise on state requirements.
Because a PAD is a legal document, it should be typed on a computer, if possible, so it is legible. Consultation with an attorney is recommended. After completion, the form is then signed and dated. Again, rules vary—generally one or more persons are needed to be a witness and to have the form signed by a notary public, depending on state law.
Patients should then make several copies of the PAD. One copy should be secured on their person and another should be kept in an easily accessible place, and additional copies should be given to their healthcare providers of record and usual medical facilities. A copy should also be given to trusted people for use in the event the patient enters a previously unknown medical facility. In addition, a copy should be filed with the individual's state repository, if available. A centralized place where copies of advance directives are stored, it can be accessed by checking with the state's protection and advocacy agency.15,16
The PAD remains valid until it is revoked, verbally or in writing. An individual who is considered legally competent may revoke a PAD at any time. If an individual is deemed legally incompetent, the PAD cannot be revised. If an individual is considered incapacitated, the state laws will provide guidance as to revoking the advance directive or overruling the agent. Individuals should be reminded to keep their PADs up to date, as preferences and treatment considerations may change. Reminders can be placed in a patient's electronic health record to alert staff to review directives on a regular basis. The plan of care should be updated to include any changed treatment decisions recorded in the PAD.4,8,9,17
While all states have specific statutes that articulate requirements for medical advance directives, only 25 states have enacted statutes that recognize and allow PADs. Some of those states have removed some barriers to implementation by creating a standard form for PADs.
In the states that lack specific statutes on PADs, there is some confusion as to how a PAD should be interpreted and applied. Although a PAD may have the same force as a general medical advance directive, healthcare professionals may be confused by the lack of a standard format that clearly and succinctly lays out a patient's wishes.2,17
In a landmark case affirming the autonomy of psychiatric patients over their personal healthcare decisions, a US District Court determined in Hargrave v. Vermont that written directives regarding mental health treatment could not be overruled by clinicians in nonemergency situations. In Hargrave, a Vermont resident sued the state, claiming a medical facility had failed to honor her desire to refuse medication in the event of a psychiatric episode when facility staff medicated her in contravention of her PAD. The court determined that the state law allowing medical facilities to overrule a patient's directive in nonemergency situations was discriminatory and unenforceable. The decision was a victory for mental health advocates who campaigned for equal rights for individuals with mental illness under the Americans with Disabilities Act.3
However, most states still allow medical providers broad discretion to override the instructions contained in a patient's PAD. For example, PADs may be overruled when the PAD instructions conflict with an accepted standard of care, a given course of treatment is not available, or the PAD instructions conflict with state or federal law. Specific interpretations of a state or local law concerning the application of agency law (such as healthcare directives or powers of attorney) and how that law intersects with or is superseded by laws concerning the care and treatment of those experiencing a disabling mental illness should be addressed with local attorneys.
Many barriers may discourage the completion of PADs. The complexity of finishing intricate forms that require witness signatures and notarization poses a significant barrier for patients with recurring mental illness. Many individuals with mental illness do not have robust support systems or trusted individuals to name as healthcare proxies. Even when individuals complete PADs, they do not always file the forms with their healthcare providers and preferred medical facilities, so the document may not be available to inform medical professionals about the patient's treatment choices during an acute episode of mental illness. In emergency situations, a patient may be directed to a nonpreferred facility that does not have the PAD on record, or staff may not have time during a medical emergency to adequately review a PAD and use the directive to form a treatment plan.
Stigma and bias about the competency of people with mental health disorders is another barrier that may limit completion of PADs. Nurses and other healthcare professionals may be unfamiliar with the document and may need to be educated about it.9,18 Nursing staff may perceive this tool as time-consuming and cite a lack of time or adequate staff as an impediment to completion.11,12
Finally, some healthcare professionals feel that PADs will result in an inventory of unwarranted demands. However, research supports that most instructions are rational and consistent with standards of care.8,11
On the horizon
Moving forward, recommendations include eliminating the need for two separate directives and supporting legislation to incorporate PADs into existing advance care directive laws. This would remove the need to construct a general advance directive for healthcare and a specific PAD.16 Education in community groups needs to be implemented to ensure that patients, family, patient advocates, and healthcare professionals understand the importance of completing a PAD.12
Fortunately, PADs appeal to both individuals and families alike because they help to promote self-determination. Cultures that value group dynamics will also endorse their use.11 Nurses and healthcare providers, including staff in EDs and inpatient and outpatient units, should be in-serviced on state laws that require adherence to PADs as well as asking patients if they have a PAD. Health records should be reviewed regularly and agency policies should include periodic checks with individuals to see if they want to initiate or update a PAD.11,15
By working together, communities, nurses, and healthcare providers can strive to eliminate the stigma associated with mental health disorders and empower individuals to share in the decisions involving their care and treatment, thereby increasing autonomy as well as patient satisfaction with the healthcare system.
What's in a name?
The Ulysses clause gets its name from Homer's epic poem, The Odyssey, which recounts the tale of the mythical hero Ulysses. Ulysses instructed his crew to tie him to his ship's mast before it sailed past the enticing sirens so he could hear their songs but be unable to follow them to his death. By doing so, he was able to delight in the beautiful music without enduring the tragic consequences.3,8,20 In the context of PADs, an individual deemed legally competent can revoke a PAD at any time; however, what happens during a crisis, when the person is incapacitated and wants to revoke his or her PAD? The insertion of a “Ulysses clause” into the directive allows the patient to stipulate that the treatment directives cannot be revoked during an episode of incapacity, so that the PAD remains intact during an emergency situation in which the patient is not considered competent.
Resources for patient education on PADs
Mental Health America
National Alliance on Mental Illness
National Disability Rights Network
National Resource Center on Psychiatric Advance Directives
Substance Abuse and Mental Health Services Administration
U.S. Advance Care Plan Registry