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National Empowerment Center - Articles

Making Advance Directives work for you

By Daniel Fisher, M.D., Ph.D. 

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Typically many of us have had the experience of being forcibly medicated, restrained, and/or hospitalized during a time of crisis. If only we could have informed the mental health workers ahead of time of ways that had helped us get through a crisis in the past, these uses of involuntary procedures might have been reduced or eliminated. A well-executed Advance Directive could be such a means of lessening the use of coercive practices. A poorly executed one, however, could actually increase the use of coercion. There are a number of challenges to meet to ensure that an Advance Directive is a friend and not a foe:

  1. Learn the terminology:
    1. Advance Directive (AD) - a legal document that allows competent people to give instructions regarding the health care they would like to receive during a time of crisis when they would not be competent to make their own decisions. The written part of an AD is called an instructional directive. The AD also describes the conditions that must occur for the AD to be implemented. The AD can also designate someone to be your health care agent in the event you are no longer competent. This is called Durable Power of Attorney (DPOA). A special case of an AD, which describes the conditions in which life supports would or would not be provided to an incompetent person, is called a Living Will.
    2. Principal - the person who states his or her health care decisions in the AD.
    3. Health care agent/proxy/attorney-in-fact - some of the names given to the person designated by the principal to ensure that his or her instructions in the AD are carried out when the principal is incompetent.
  2. Learn about the laws upon which AD's are based
    1. The Federal Patient Self-Determination Act of 1990 requires that each health care provider receiving Medicaid or Medicare must:
      1. Inform patients of their state's laws regarding Advance Directives
      2. Note in the patient's chart whether or not he/she has executed an Advance Directive
      3. Ensure that the state's Advance Directive laws are followed
    2. Learn about your state's Advance Directive law. Contact your state Protection and Advocacy Agency. The NEC can give you contact information.
  3. How to develop a plan to make an AD work for you - Advance Directives can benefit a few consumer/survivors who are good self-advocates and are part of an empowered social network. On the other hand many consumer/survivors, who often lack the individual advocacy skills and/or lack strong advocates as friends, should develop a plan to address the following issues:
    1. Make sure the AD is your plan. Mental health facilities are typically poor at ensuring that the goals of consumer/survivors are expressed in their treatment plans. Therefore, an AD prepared by a mental health facility "for" a consumer/survivor may well not express that person's wishes, but instead will likely reflect what the provider thinks the person "needs." You should not sign an AD prepared for you by someone else unless it actually reflects your wishes. You do not have to sign an AD if you don't like what it says. You can always prepare your own AD instead.
    2. Find a way to ensure that your doctors will follow the AD. I learned that in Oregon, even though doctors were given legal immunity, they say they do not have to follow AD's. In addition, they say that they are not obligated to follow the health care agent's decisions. There is a case in Vermont testing this last point (see accompanying article by Xenia Williams).
    3. Select a good health care agent. This needs to be a remarkable person with some of the following traits:
      1. Someone you trust deeply, who cares about your welfare, and who knows you well
      2. Someone who knows your wishes regarding physical and mental health care through discussions and through access to your instructional directive
      3. Someone who is easily reachable night or day (for instance someone with a phone or better yet a beeper) and who is willing and able to speak with health care personnel
      4. Someone who is a strong, articulate advocate and is well informed about the types of treatments proposed
      5. Someone who the health care providers will take seriously
      6. Someone whose role will be undisputed. Some states prevent certain people from becoming agents. For example the state of Washington excludes your treating provider, and the operators of certain care facilities. These provisions help prevent conflicts of interest.
    4. Make the AD accessible. Ensure that a person's updated AD is at the right place at the right time in a manner that recognizes the principal's need for confidentiality. In urban areas, where someone could be taken to any number of emergency facilities, this is a big barrier.
    5. Carefully specify when, how, and by whom the principal is declared incompetent. The threshold could be set at a lower level than the state law for commitment (such as a person prone to mania might put in an AD that an agent would take over when they had spent $2,000 beyond his or her means).
    6. Clarify the issue of when or if a principal who has been declared incompetent can revoke the AD. If it turns out that either your wishes are not being followed or your agent is not working on your behalf, you should be able to revoke the AD even after you have been deemed incompetent. Some states do not allow this provision.
    7. Develop safeguards to ensure that ADs are followed in the manner that the consumer/survivor intended. Only a carefully chosen, highly regarded agent can partly ensure the process is fair. However, if the status of the agent were low relative to that of the treating facility, he or she would need outside quality assurance to protect the rights of the consumer. Such assurances rarely occur in mental health.

These are but a few of the complexities involved in Advance Directives. The Bazelon Center is urging Protection and Advocacy programs to institute ADs on a wide scale. Robert Fleischner from the Center for Public Representation, Northampton, Massachusetts, has prepared an excellent analysis of ADs: "An Analysis of Advance Directives Statues and their Application to Mental Health Care and Treatment." A copy can be obtained from NAPAS, 900 Second St., NE, Washington, DC 20002. Fleischner concludes: "Despite the uncertainties, their inherent limitations and barriers to their use, advance directives may offer people with mental illness a formidable device to gain more control of their treatment and to promote their autonomy." Several consumer/survivor groups have also indicated an interest in using them. I would recommend caution and careful study. Some consumer/survivors have the skills and network needed to have the AD work for them. Many mental health consumers, however, typically lack many of the resources, social supports, and self-esteem needed to make an AD work in their behalf. In such a situation, they are often at the mercy of the system and there are not sufficient safeguards to ensure that the AD will work for them. In those cases the AD can actually make it easier for health care officials to coerce the consumer. We want to find out what people's experience with advance directives has been. We would love to hear from you.

Additional Information on Advanced Directives