FAQs

[excerpted from Swanson, Swartz, Elbogen et al., (2006) Effectively Implementing Psychiatric Advance Directives, unpublished grant application, “Background & Significance” section]:

Historically, PADs are a variation of medical advance directives (ADs), legal instruments that typically offer three types of self-directed planning of one's own health care in anticipation of a later time of decisional incapacity: (1) a competent individual's informed consent to future treatment; (2) a statement of personal values and general preferences to guide future health care decisions; and (3) the entrusting of someone to act as a proxy decision maker for future treatment. 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), durable powers of attorney (appointing a surrogate decision maker), or both (Meisel & Cerminara, 2005). The federal Patient Self-Determination Act of 1990 (PSDA) was later enacted to promote the use of written ADs after the U.S. Supreme Court, in the Cruzan case, permitted states to apply a strict evidentiary standard of “clear and convincing evidence” to oral statements by patients who had not completed written directives (Cruzan v. Missouri Department of Health, 1990). The PSDA requires hospitals and other health care organizations to inform patients of their rights under state law to prepare an AD, to inquire and document whether patients have executed ADs, to ensure compliance with state laws by respecting advance directives, and to educate health care providers regarding these legal instruments (Omnibus Budget Reconciliation Act of 1990, 1990).
In the wake of the PSDA, mental health advocates appropriated some of the ideals of ADs and applied them to the context of consumers with psychiatric disorders, who were seen to be particularly vulnerable to loss of autonomy and at risk of receiving unwanted interventions (Backlar, 1995). Advocates hoped that PADs would give persons with severe mental illness greater autonomy and control over their own lives – both directly, during time of crisis, and perhaps indirectly, by improving continuity of care and working alliance with mental health professionals, and thus decreasing the need for involuntary treatment (Appelbaum, 1991; Backlar, 1995; Swanson, Tepper, Backlar, & Swartz, 2000; Winick, 1996).

If you are determined to lack capacity to make your own decisions about treatment, your health care provider must follow the treatment instructions that are written in your PAD or given by your health care agent. Your health care provider may notify all other providers of the instructions in your PAD.   However, your health care provider is not required to follow your PAD instructions if they conflict with accepted standards of medical care or are contrary to your needs during an emergency.

• Tell your outpatient doctor or your case manager about your PAD so that they are aware of it.
• You should keep copies of your PAD, or your PAD registration card, on your person at all times.

No. The following states have established a PAD statute:

In some states, the generic advance directive limits the decisions that may be made about mental health care and may prohibit the general health care agent from making mental health treatment decisions.

Your Health Care Agent will make the same treatment decisions as you would if you were able.

• Your Health Care Agent must act as you would act if you were capable.
• Your Health Care Agent must do what you instruct in your PAD.
• Your Health Care Agent can discuss and review treatment information.
• Your Health Care Agent can change your health care provider.
• Your Health Care Agent can decide on your admission to a treatment facility and/or medications and ECT (electroconvulsive therapy).
• You can limit your Heath Care Agent to making only mental health treatment decisions.
• You can tell your Health Care Agent of any medications, treatments or hospital admissions you want considered.

When your health care provider determines that you are incapable of making decisions, your health care agent will be consulted about your treatment. If your health care provider is not available, then the attending physician or eligible psychologist decides when to consult your health care agent. The decision to consult your health care agent must be put into writing.

You can appoint any capable and competent adult who is 18 years or older. They cannot be providing your health care. You can appoint more than one Health Care Agent. However, only one can serve as your Health Care Agent at a time. You must indicate your order preference.

Yes. This is done through a document called a Health Care Power of Attorney, or a Durable Power of Attorney for Health Care, sometimes also called a health care agent, surrogate, or proxy decisionmaker.

You can appoint any capable and competent adult who is 18 years or older who is not your health care provider.

THIS IS NOT SO IN STATES THAT HAVE A SEPARATE MENTAL HEALTH CARE AGENT AND ALSO A REGULAR HEALTH CARE POWER OF ATTORNEY. CONCEIVABLY BOTH COULD BE AUTHORIZED SIMULTEOUSLY.

This varies from state to state. Generally, when your PAD instructions are not followed, your mental health care provider must notify you or your health care agent, and then document this notification in your medical record with the reason for not following your PAD.

No.  Your PAD will be followed as closely as circumstances and the law allow.

Involuntary commitment to a treatment facility takes priority over what your PAD says about hospitalization. However, your preferences regarding medication and other aspects of treatment while hospitalized should be followed even while you are involuntarily committed.

Yes.  Your PAD would not be followed:

• If it conflicts with “generally accepted community practice standards.”
• If the treatments requested are not feasible or available.
• If it conflicts with emergency treatment.
• If it conflicts with applicable law.

A PAD is a legal document created by a competent person. The purpose of the document is to allow the person to give instructions for future mental health treatment or appoint an agent to make future decisions about mental health treatment. The document is used when the person who created the document experiences acute episodes of psychiatric illness and becomes unable to make or communicate decisions about treatment.

This varies state by state. Generally, the answer is yes, you may change or end your PAD at any time you are considered "capable." For more detailed information about how to revoke or modify your PAD, you should click on your state and refer to either the statute or the frequently asked questions for that state.

You should give it to your mental health care provider who will make it a part of your medical record.

This varies state by state. Refer to your state's page for information about forms and requirements. Generally, you can create a PAD by filling out the provided form for your state. If your state does not have a specific form, your state's statute should list the criteria for making your own valid form. You usually are required to have your PAD form witnessed and formally signed, and sometimes even notarized. You must have your form given to your attending physician and your other mental health treatment providers.

This varies state by state. Refer to your state's page for information about forms and requirements.  Generally, you can create a PAD by filling out the provided form for your state. If your state does not have a specific form, your state's statute should list the criteria for making your own valid form. Most states require the PAD form to be witnessed and formally signed, and some states require it be notarized. You must make sure that your PAD form is given to your physician and your other mental health treatment providers, so that they will have access to your PAD during any future crisis.

Additional information you can include in your PAD:

• a person to contact in case of a mental health crisis
• possible causes of your mental health crisis
• ways to help you avoid hospitalization
• how you generally react to hospitalization
• other relevant instructions

Generally, incapacity means that, at a particular time, you lack sufficient understanding or ability to make and communicate mental health treatment decisions. However, the legal definition of incapacity varies from state to state, and some states do not define incapacity. Usually, incapacity is determined by a physician or eligible psychologist, but in some states it must be determined by a judge.

A PAD generally permits you to plan for, consent to, or refuse future treatment, such as:

• hospital admission
• administration of medication
• electroconvulsive treatment (ECT)

A PAD permits you to make these decisions in advance, anticipating that you may experience crisis at some future time when you will not be able to make decisions or communicate your wishes about treatment.

There are two main reasons:

• A PAD makes it possible for you to be treated according to your wishes.
• Creating a PAD can facilitate a more informed and open dialogue with your treatment provider.

The law was enacted in order to encourage individuals to make advance health care decisions regarding life-sustaining care. It was not until after enactment that the value of advance directives in psychiatric care was seriously considered.

With respect to psychiatric advance directives (PADs), there is considerable interest among individuals at risk of psychiatric crises in creating a psychiatric advance directive, but attitudes of clinicians about PADs are associated with this interest. As a result PADs are not yet widely used. However, as PADs become more popular, they could usher in a new era of revolution in medical decision making, greatly increasing patient authority over medical decisions.

Reviews of the impact of this federal law are mixed.  Advance directives are typically more advocated than used, although receiving information on advance directives appears to have an impact on individuals' interest in obtaining a directive.  Facilities generally comply with requirements, but few document in the record if the individual has an advance directive.  There is little in the way of public education and communication between individuals and doctors falters in this regard.

Individuals may file complaints concerning the advance directive requirements with the state survey and certification agency for Medicare and Medicaid.  Health plans and institutions must inform consumers that they have this right.

Under the law and implementing regulations , hospitals, skilled nursing homes and nursing homes must provide the required information to individuals at the time of admission.  In the case of managed care health plans, the required information must be provided at the time of enrollment.  In the case of hospice programs, information must be provided at the time of initial receipt of care and in the case of home health care or personal care providers, in advance of the individual receiving care.

The state Medicaid agency (directly or through a contract) must develop a written description of the state's advance directive law to be distributed by Medicaid providers and by health plans.  Any revisions to that state law must be incorporated no later than 60 days from when they become effective.

When Medicaid contracts with a managed care plan, it must require the plan to comply with the federal law requirements for maintaining written policies and procedures regarding advance directives.  The managed care plan must then meet the requirements of this law (as described in this document).

Under this federal law, an advance directive is defined as:

A written instruction, such as a living will or durable power of attorney for health care, recognized under state law (whether statutory or as recognized by the courts of the State), relating to the provision of health care when the individual is incapacitated.

If permitted under state law, providers can refuse to implement provisions of an advance directive, based on conscience objections.  The facility must make clear when instructions of an advance directive would not be followed due to a conscience objection and:

• Provide a clear and precise statement of limitations if the provider cannot implement the advance directive based on conscience;
• Clarify any differences between institution-wide conscience objection and those that may be raised by individual physicians;
• Identify the State legal authority permitting a conscience objection,
• Describe the range of medical conditions or procedures affected by the conscience objection.

Individuals with mental illness have equal rights under this law with other users of health care.  They may establish an advance directive for health care (generally this is used for end-of-life care), or establish a health care agent for health care.

In addition, this law can be used to establish an advance directive for mental health care, to be used in the event the person becomes incapacitated, and/or to appoint an agent for mental health care.   Individuals with mental illness are empowered to make advance decisions concerning their health-care needs when they are incapacitated.

The law requires that these entities meet certain requirements in order to be paid under Medicare or Medicaid.  The entity must:

• Provide adults with written information concerning their right under state law to participate in decisions concerning their medical care.
• Provide adults with written information on its policy regarding advance directives.
• Maintain written policies and follow certain procedures with respect to advance directives.
• Document in the patient's medical record whether or not the patient has executed an advance directive (including a psychiatric advance directive).
• Comply with all State laws regarding advance directives (this includes complying with any state law on psychiatric advance directives).
• Not condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive.  This does not mean, however, that a provider is required to provide care that conflicts with an advance directive.
• Inform the individual that complaints concerning implementation of these advance directive requirements may be filed with the state agency that surveys and certifies Medicare and Medicaid providers.
• Provide staff and community education on issues related to advance directives.

Certain provider entities must comply with the law in order to receive Medicare or Medicaid payment from the federal government.  However, the requirements of the law apply for all individuals in these facilities (or treated through these providers), not only for people who are on Medicare or Medicaid.  Provider entities covered under the law are:

• Hospitals;
• Skilled nursing homes;
• Nursing homes;
• Providers of Medicare and Medicaid home health care;
• Medicaid personal care providers;
• Health maintenance organizations competitive medical plans and health care prepayment plans;
• Hospice programs certified by Medicare or Medicaid.

In addition, state Medicaid agencies have certain obligations under the law.

Federal law does not require individuals to complete any form of advance directive (and nor do state laws), and it expressly forbids requiring an advance directive as a requisite for treatment.

The intent of the law is to provide an opportunity for adults to express their desires about medical treatment in advance, and to educate the entire population on advance directives.  The law was enacted with the intent to offset a perceived imbalance between health care consumers and providers. The federal law does not grant consumers new rights; those specific rights are spelled out in state law.  The federal law requires hospitals and other providers (including psychiatric hospitals and other mental health providers) and health plans to maintain written policies and procedures with respect to advance directives.

The Federal Patient Self Determination Act  (enacted in 1990) addresses the rights of health (including mental health) care users to stipulate in advance how they would like to be treated by health care providers when they are incapacitated.  These wishes can be articulated by consumers in a specific document (an advance directive) or by appointing someone as a health care agent to speak for them.