Prepared by: Antistigma Home Page National Stigma Clearinghouse Web: <> E-mail: <> ADVANCE DIRECTIVES Articles about Advance Directives: 1. Mary Ellen Copeland 2. Bruce Taylor Seeman 3. Daniel Fisher 4. NAPAS Duke University Program on Psychiatric Advance Directives (Click here) <> Advance Directives by Mary Ellen Copeland Mental Health Recovery Newsletter, May 2004 Through the past several issues of this newsletter, I have been addressing various parts of the Wellness Recovery Action Plan. In this issue I want to focus on two parts of the Advance Directive: signs that I need assistance and support from others, and a home/community/respite plan. An Advance Directive is like the living will of mental health. You may have heard it referred to as a Crisis Plan. There is a form for this plan that you can download on the website It is also available there in Spanish. When I mention the Advance Directive, many people say to me, I don't need an Advance Directive now that I am using the Wellness Recovery Action Plan (WRAP). In fact, you may be one of the many people who say that since they started using WRAP, they haven't had a crisis. And that is great. Or they will say, I haven't had a crisis in years so I don't need an Advance Directive. I disagree. Given the uncertain circumstances of the world, and of our lives, we never know when we might get overwhelmed and old difficult feelings, thoughts and behaviors return. We may become deeply depressed, very anxious and agitated, begin hallucinating or hearing voices, or begin to abuse substances that we have avoided for a long time. Without an Advance Directive, others can take over control of your life. Perhaps people you don't want to be involved will be making decisions for you. You may be given treatment that have not helped, or even been harmful in the past. You may be restrained or coerced in ways that are traumatizing. Having an Advance Directive keeps you in control even when it feels like things are out of control. The people you have chosen will take over, and do the things you want them to do, things that will help you to recover quickly. If you don't have an Advance Directive, people might take over when you can really use your WRAP to take care of yourself, they might do things that are not helpful and they might assist you in ways that are not helpful to you. They might make the situation worse. You may have developed the first four parts of WRAP. Those are the parts that you use for yourself. You write it so you can understand it. The Advance Directive or Crisis Plan is different. You have to write it so others can understand it, so that they can do for you whatever it is that would be most helpful to you. When you have completed your Advance Directive, you give a copy to each of the people you want to help you. Review it with them in case they have any questions or there is something they don't understand. You could even have all your supporters get together and discuss your plan with you to assure that everyone will do what you want them to do. Some sections of the plan are quite straightforward and you can easily do these on your own or in your WRAP group: what you are like when you are well, who you want to assist you when you are in crisis, the medications you are using, treatments that help and those that don't. The sections I am going to address here are more difficult for most people. They were hard for me. Signs that others need to give me assistance and make decisions for me. It is really important to take your time developing this section. You don't want people stepping in and taking over when you can take care of yourself. Think back to times when you were having the most difficulty and really couldn't think clearly or take care of your self. This is the worst of it. It is not pleasant. If you think about it for a while and start feeling badly, leave it for a while and come back to it later. Even better, work on it with a friend or in a WRAP book. After you finish, or when you take a break, do some thing special, something that makes you feel good about your self, like listening to a favorite CD, calling a good friend, playing with your pet or doing some art work. When you write these things you want to be very specific so someone else can understand it. They are different for everyone. Some ideas would include: -Washing my face so much that it is red and bleeding and I still won't stop -Counting things- like ceiling tiles-over and over without stopping for four hours -Shoplifting -Purposefully breaking up furniture -Being violent with others -Non-stop crying for two days -Thinking I am someone famous -Spending over $100 on things I clearly don't need- like junk from the dollar store -Thinking the television is talking to me -Wearing lots of garish make-up -Hitting my pets or children -Not knowing who my family members and friends are -Not moving for three hours -Refusing to eat for more than two days -Consuming alcohol -Having other signs that I am not OK and telling others I am fine Home/Community/Respite Plan Even though you may be having a very difficult time, hospitalization may not be the best option. For me, if I stay at home with my things, sleep in my own bed, have my own food while I am supported by close friends and family members who know what to do that is helpful, I get past the difficult time more quickly. Hospitalization in a place where you have never been before, where you are away from your friends and family as well as many of your wellness tools, may not help and may make you feel worse. In addition, because of insurance issues, hospital stays are often very short, too quick to be really helpful, and are sometimes not even an option. Many people have benefited from developing a plan so that they can stay at home supported by friends and family members, possibly attend a treatment program during the day, or a peer run crisis respite center. This is a much better option for them. For instance, a number of years ago, I wrote such a plan for myself. And a time did come when I was deeply depressed. I didn't tell anybody. And I was living alone at the time. However, my counselor and my daughter noticed the signs that I had written in my plan. As they had been instructed, one of them called all the women in my women's group and several family members I had named in the plan. They arranged so that someone would be with me around the clock. Mostly they had two-hour shifts, but one person spent the night each night. They knew what food would be most appealing to me so they cooked it for me. They knew what kind of activities to encourage (like walks) and what not to encourage (playing board games or watching the news on television). They knew who my care providers were, were in touch with them, made arrangements to take me to see them, and actually took me there. When I was rude and told them to leave, they didn't pay any attention. My plan also told them that if I became abusive to them or they felt they could not keep me safe, who they should contact and what should be done. It worked. In a few days I was feeling much better and could begin the process of recovering from this crisis. My more recent plan contains several crisis respite centers as options. I haven't had to use it recently, but if I had to, I have already made those arrangements. There are also several programs in the community that I could attend during the day that might be helpful and that would give my supporters a break. When you are thinking about this plan for yourself, thinking about answers to the following questions might be helpful. You could discuss them in your WRAP group: -Is hospitalization always an option when you are having a hard time? -Is hospitalization the best option when you are having a hard time? -What are the pros and cons of hospitalization? (Advantages of staying home rather than going to the hospital when you are having a difficult time). -Why is it important to have a plan so that you could stay at home or in the community? -Why might you feel better more quickly if you stayed at home or in the community? -What would you need in order to stay home when you are having a difficult time? -What could you do for yourself if you stayed home when you were having a difficult time? What are the Wellness Tools you could use? -What could others do for you if you stayed home when you were having a difficult time? -Do you have friends or family members who could take turns providing you with care and support? Who are they? -Are there any programs in your community that you could attend during the day and be at home in the evening? What are they? -Are there any respite programs in your community? What are they? -What health care providers would be available to support you and how could they help? Wellness Tool - Getting Through These Difficult Times This is a very hard time in the world. Every time we read the newspaper or watch television, we see pictures of terrible things that are happening. This can be very upsetting. Some people are noticing that they are feeling more depressed and anxious. Difficulty feelings are coming up more often. Several things you might do that would help: -Decide if there is some action you could take based on your beliefs and concerns. It might be an e- mail, letter or phone call to a public official, sending a letter to the editor of your newspaper, attending a public meeting, taking part in a vigil or demonstration or sharing your concerns with others. -Avoid reading the newspaper or parts of the newspaper that are disturbing, be selective about what you watch on television and listen to on the radio. -Do lots of good things for yourself that affirm the wonderful person you are-take a walk, visit a friend, make yourself something special to eat, play with a child or grandchild -- whatever it is that makes you feel good. -Do something nice for someone else. Bake a loaf of bread for a neighbor. Help them with household chores. Visit someone who is sick. -Use your Wellness Recovery Action Plan. Do the things on your Daily Maintenance Plan every day. It is especially important now when you are under constant stress. Use the other parts of your plan as you need to. Check your list of Wellness Tools. Are there any other good things you could be doing for yourself? Source: NYAPRS E-News  
  _____________________________ ARTICLE 2 Psychiatric Documents Can Aid Mentally Ill in Crises BY BRUCE TAYLOR SEEMAN Newhouse News Service, May 2004 People with psychiatric problems who struggle daily to maintain their footing are relying on an increasingly popular document to protect them if they falter: a page or two of written instructions that spell out their care. Some documents list medications to be given. Others identify which doctor to call, whether electric shock therapy may be used, or what kind of music works best to soothe a patient's distress. The documents, called "psychiatric advance directives" (PADs), are similar to living wills: Both aim to honor people's autonomy by carrying their voices forward if they become too sick to speak for themselves. No national estimate exists on how many people have chosen the tool, and doubts persist among skeptics who see risks in giving patients a forceful voice regarding their treatment in psychiatric emergencies. But people like Kathy Cleary, 44, a former nurse diagnosed with borderline personality disorder and depression, say a greater voice in treatment is precisely why the documents make sense. During a difficult episode, Cleary used her PAD to block an attempt by jittery hospital workers to put her in leather restraints. Such a step would only have escalated her agitation, she says. "I was arguing with them," remembers Cleary, of East Hartford, Conn. "I had the document in my hands. They said, `We´ve never heard of this.´ They said they wanted to call their lawyer. And their lawyer said, `We´re not sure this is perfectly legal, but until we find out differently, we better do as it says."´ About 9 million Americans struggle with serious mental illnesses such as bipolar disorder, schizophrenia or clinical depression. Many experience repeated episodes of instability. When healthy, however, most are competent to outline their desired care, especially with professional help, mental health advocates say. Some of the documents are written under state laws on living wills that allow people to formalize choices for end-of-life medical care. Some states -- Ohio recently became the 19th -- have enacted laws that specifically outline procedures for establishing an advance directive for mental health care. The first large-scale study of PADs is under way with a $2 million grant from the National Institute of Mental Health. Led by a team of Duke University researchers, the four-year project will follow 500 people to see whether providing help motivates people to complete PADs, and how well the documents work with doctors and hospitals. Mary Ellen Mixon, 56, would like to establish a PAD that outlines important features of her illness. She is claustrophobic. She needs her medication at 7 each night. At times, her mind races. Given her struggles with bipolar disorder, the former bank executive knows she needs help completing the document. "My lack of control is my fear," says Mixon, of South Pasadena, Fla. "I've always made my own decisions, on my career, my kids." Now, she says, she worries that a bad turn will send her into the streets, or to an unfamiliar psychiatric hospital, where "they don't know me." Jeffrey Swanson, the associate psychiatry professor at Duke who is leading the new study, said an effective PAD may act as a "psychiatric resume" for a patient in crisis: "This is who I am. I had my first psychotic episode when I was 21 years old. This is the medication I am allergic to. This is the one that works best for me. And I want you to notify my mom." Like a living will, a PAD requires two witnesses and must be notarized. It may also identify someone who accepts the legal responsibility of acting as an advocate when the document's author is deemed incompetent. In Connecticut, state officials are finalizing a PAD "tool kit," a 20-page guide to help consumers complete their documents. One of the promoters of the project is Karen Kangas, director of recovery affairs for the state mental health department. Kangas, diagnosed with bipolar disorder, has completed a PAD that outlines preferred medication and other treatment particulars. Her representative is her son, Deron Drumm, 32, who as a child watched her ride the cruel ups and downs of her disease. He once called 911 just in time to prevent her death from an overdose. And he has listened to his mother's painful stories about her treatment once inside the locked halls of psychiatric hospitals. "I envision a doctor not wanting to recognize (her PAD)," says Drumm. "But I've got power of attorney, and I have the advance directive. If he insists on a medication that I know doesn't work, I'm ready to fight him. I know how to do it." While many doctors and hospitals are accustomed to living wills being used as guides when patients approach death, PADs may be used in more complicated circumstances. People caught in a psychiatric crisis may disavow earlier written requests for hospitalization or medication. They could become combative, forcing doctors to consider whether the no-restraints or no-isolation declarations in their PADs should be overruled for safety's sake. In a recent medical journal study, a University of Washington researcher found that nurses, social workers, doctors and hospital administrators had concerns about the documents. Some professionals said people with psychiatric illnesses might not be competent to outline their own care. Others worried that doctors would not have access to the documents or even know that a patient had one. Some said psychiatric advance directives would spawn legal suits by those claiming the documents were not properly honored. Dr. Paul S. Appelbaum, chairman of the psychiatry department at the University of Massachusetts, said PADs have "considerable potential" but could become outdated and dictate treatment for a patient whose condition is evolving. "These issues really need to be thought through," said Appelbaum. Advocates for people with mental illness, meanwhile, say much of the skepticism can be attributed to the documents' newness. They insist that until a person with psychiatric disabilities is judged incompetent, he or she carries the same rights as others to decide about care. "They have this idea that consumers can't rationally decide about their own advance directives," said Chris Koyanagi, policy director for the Bazelon Center for Mental Health Law, a legal advocacy group based in Washington, D.C. Swanson, the Duke researcher, said the documents may help patients even if an emergency never arises. People who talk to a doctor about their treatment preferences, as well as what may be done to prevent a relapse, may feel more in control of their care and adhere to that treatment. "If someone starts to get sick and loses insight into needing treatment, the therapist may say, `Let´s see what you said (in your PAD) about needing treatment to avoid going back to the hospital," Swanson said. Mental health organizations have posted blank PAD forms on their Web sites. Some state governments have allotted money for programs that urge people to sit down with their doctors and complete PADs. Over the past three years, at least 200 people in Ohio have completed PADs, officials estimated. Mental health advocates are now exploring ways to establish a privacy-protected central registry so that doctors, nurses and other professionals can check to see whether a new patient has a PAD. "This is just another step in the whole progression of how we deal with mental illness," said Ron J. Rees, director of the Washington County (Ohio) Mental Health and Addiction Recovery Board. Meanwhile, a track record is developing among patients who have successfully used their PADs. Joe Peterson, 51, of New London, Conn., was hospitalized in 2000 when doctors tried to force him to take a schizophrenia drug that he said overmedicated him. Peterson refused, knowing he had completed a PAD saying he did better on anti-anxiety drugs. "Chemical restraints such as neuroleptics may not be used," read his PAD. The hospital initially balked at Peterson's request, then relented and discharged him, recalled Susan Werboff, director of Connecticut's Protection and Advocacy for Individuals with Mental Illness Program. Source: Newhouse News Service  
  ARTICLE 3 Making Advance Directives Work For You By Daniel Fisher, M.D., Ph.D, Dec. 2000 National Empowerment Center <> 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: I. 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. II. Learn about the laws upon which Advance Directives are based: 1. The Federal Patient Self-Determination Act of 1990 requires that each health care provider receiving Medicaid or Medicare must: Inform patients of their state's laws regarding Advance Directives, Note in the patient's chart whether or not he/she has executed an Advance Directive, 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. III. How to develop a plan to make an Advance Directive 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: Someone you trust deeply, who cares about your welfare, and who knows you well Someone who knows your wishes regarding physical and mental health care through discussions and through access to your instructional directive 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 Someone who is a strong, articulate advocate and is well informed about the types of treatments proposed Someone who the health care providers will take seriously 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. End of Article by Daniel Fisher ______________________  
  ARTICLE 4 Q & A re Psychiatric Advance Directives: A Tool for Taking Control of Personal Treatment Decisions During a Mental Health Crisis Source: National Association of Protection and Advocacy Systems, Inc. (NAPAS) February 2000 Many states have recently passed laws which give people the right to specify, in advance, choices about how they will be treated in the event that a mental illness renders them incapable of making their own medical treatment decisions. These "psychiatric advance directive" laws offer an exciting tool for people with serious mental illness to retain control over personal choices at the very moment when the structure of the mental health system threatens a total loss of individual control. What is An Advance Directive? An advance directive is state statutory authority for a person to specify, in advance, choices about how he wants to be treated in the event that illness renders him incapable of exercising treatment choices. Today, every state has some form of advance directive statute. There are two types of advance directives: 1)Durable Power Of Attorney (a.k.a. Proxy or Agent) This is, by far, the most common form of advance directive. It allows a person to designate agents to make health care decisions on their behalf if they are unable to do so. This agent is responsible for carrying out that person's wishes. The wishes could be described in either a written record of consumer preferences or made known to the agent in some other way. This person does not need to be an attorney; 2) Instruction Directive A legal document that spells out a person's wishes regarding their health care in the event that illness renders them incapable of exercising treatment choices. Most advance directives statutes allow individuals to make decisions related to mental health (psychiatric) treatment as well as physical health treatment purposes. This said, it is not uncommon for an advance directive statute, while allowing mental health treatment to be addressed, to specifically prevent, the agent from making certain mental health treatment decisions - usually convulsive treatment, involuntary commitment and pycho-surgury. A very small number of states specifically exclude mental health (psychiatric) health care from their generic advance directives statutes. Most of the states which exclude mental health (psychiatric) treatment from their generic advance directives statute have other specific laws which address advance planning for mental health care. What Are Some Benefits and Barriers to Use of Advance Directives? Individuals with serious mental illness may find several benefits from completing an advance directive for mental health care decisions. The overarching benefit is the opportunity to empower themselves at a time when mental health professionals determine them incompetent to make medical treatment decisions. If decision making power is returned, and an individual is confident the advance directive will be followed, some persons with mental illness indicated an increased willingness to agree to voluntary intensive psychiatric care. Advance directives may also improve the quality of health care received by people with mental illness because it can identify for mental health providers the types of medical intervention which have been most beneficial when past crisis situations have arisen. An advance directive may also improve the quality of care because it offers a vehicle for sharing information that would normally be unavailable to personnel. One benefit of improved care is that an individual may be less likely to need hospitalization or, if hospitalization is necessary, the rate of stay may be reduced. A fiscal and administrative benefit results from the existence of an advance directive because it shortens the time spent litigating issues related to civil commitment and forced treatment. Advance directives can be a real tool for empowering individuals with mental illness. However, in some states the advance directive statute itself sets up barriers to effective use. Some barriers could include a state statute that: 1) limits the type of treatment that can covered in an advance directive; 2) fails to make it clear whether the advance directive can cover psychiatric health care concerns; and 3) have confidentiality restrictions that limit the information proxies can receive related to diagnosis, treatment modalities, medications, side effects or community resources. There are also social and attitudinal barriers that can reduce the effective use of an advance directive, these could include: 1) health care providers who refuse to honor advance directives and no penalty for such a refusal; 2) lack of knowledge by medical or law enforcement personnel about the existence of an advance directive; 3) receipt of care in an emergency room or law enforcement setting where there is lack of knowledge of the directive and little time for consultation with a proxy; 4) a medical and judicial system which is unsure of the legal weight of an advance directive; 5) doctors fear the advance directive might direct nontraditional, inappropriate or expensive care; 6) people with mental illness may not be able to identify someone they can trust to be their proxy; and 7) mental health professionals fear civil or criminal liability if they honor an advance directive over a families objections. What Should a Psychiatric Advance Directive Include? Every state requires some degree of formality in the execution of an advance directive. In many states there is a mandatory form which must be used for the document to be valid. Examples of some of the issues which could be covered in an advance directive include: 1) specific treatments that have and have not worked in the past; 2) who should be contacted if an involuntary treatment occurs and preferences for where that commitment should be; 3) temporary custody arrangements for child or pet care; and 4) allergies to food and medicines. Where Can I Go for More Information About Advance Directives? The Bazelon Center for Mental Health Law (<>) has available a sample psychiatric advance directive form which provides step-by-step guidance for completing an advance directive and raises personal and legal questions an individual might consider when completing an advance directive. This document is available on their website or by contacting their office at: 1101 15th Street, NW, Suite 1212, Washington, D.C. 20005, (202) 467-5730. In addition, each state has a protection and advocacy program (P&A) that may be able to provide free guidance and assistance to individuals who wish to complete an advance directive. For information about the P&A in your state contact the National Association of Protection and Advocacy Systems at 900 2nd Street, NE., Suite 211, Washington, D.C. 20002, (202) 408-9514 or visit their website at <>. (Disability Issue Areas). This Association also has available "An Analysis of Advance Directives Statutes and Their Application to Mental Health Care And Treetment." End of Article _____________________ The Antistigma Home Page thanks 'Mental Health E-News' a service of the New York Ass'n of Psychiatric Rehabilitation Services, for forwarding the articles above.  
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