Poisoned Lives: Fetal Alcohol Syndrome
Yma A. Johnson, Ann Arbor Observer- 11/30/2003

When Moses Campbell was thirteen, he broke into the homes of two neighbors on the east side of Ann Arbor. Each time, he stole the mother's underwear, spread it around the house, and lit small fires nearby. Although the damage was minor, his mother, Susan Campbell, was shocked and frightened. Up until then, she says, her son "had never done anything wrong."
    Not that Moses' life had been easy. Born in Detroit in 1978, he was adopted by the Campbells at age three and a half, after he was featured in the Detroit Free Press column "A Child Is Waiting." Susan and her husband were aware that his parents were developmentally disabled and that Moses himself had mild cerebral palsy and developmental delays. They did not know that his mother had drunk enough alcohol during her pregnancy to damage his brain permanently. At age eighteen, Moses set another fire and was jailed for six months. While in jail, he was diagnosed with fetal alcohol syndrome (FAS).
     FAS was fast identified in 1973 by University of Washington researcher David Smith and student Kenneth Jones, who'd been studying birth defects among children with exposure to alcohol in utero. They defined three diagnostic criteria for the full syndrome: slow prenatal or postnatal growth, a characteristic face with small eye slits, a short upturned nose, and a flattened midface and central nervous system damage.
    About one child in 500 is born with FAS. Additionally, about one child in 100 children is born without the facial features but with some degree of "fetal alcohol effects" (FAE). FAE children appear physically normal but have hidden damage to their nervous systems. Fetal alcohol exposure is now considered to be the leading preventable cause of mental retardation.
    Alcohol is a very potent neurotoxin; even small quantities can have devastating consequences. Depending on how much the mother was drinking and what organs were developing at the time, every part of the growing fetus is at risk. You can't "say that this many drinks causes this kind of effect and that many drinks causes that kind of effect," says Barb Wybrecht, cofounder of the U-M's FAS clinic and parent of an adopted child with the syndrome. "It doesn't work that way. There are some babies who miss the bullet."
    Moses did not miss the bullet. When Moses arrived at the Campbells', Susan recalls, "he couldn't talk. He had maybe ten words." They were fortunate that his delayed development had already been diagnosed-at least Moses was able to get some support services right away.
    Unlike many FAS children; Moses was always popular and friendly--in fact, too friendly. At age five the Campbells took him to be assessed by a psychiatrist. "He never should have come with me the way he did," the doctor warned them afterward. "I'm a complete stranger to him, and ` he just jumped right up and put his hand in mine. He's too trusting." Susan was taken aback. She had never thought about this lovable behavior as a problem. But Moses was so trusting because he had no sense of boundaries. As a youngster he would walk into strangers' houses. Punished for entering one home, he would simply enter another. Asked why, he would explain that no one had told him not to go into that house. "He just didn't have that sense that a stranger is a stranger," Susan recalls. "He never got that."
    Severely impaired judgment and an inability to learn from consequences are common among FAS/ FAE children. "When he started school it became apparent that he couldn't focus at all," says Susan. Like many other alcohol damaged children, he found the bright lights, noise, and activity of a normal elementary classroom overwhelming.
    Moses was moved into a form of special education called a self-contained classroom. "He did much better as long as he had a lot of structure and small groups," Susan says. Working in a three-sided carrel and wearing noise-blocking headphones, Moses finally was able to concentrate. "He loved school," Susan remembers. "He began to learn his colors, his letters. It was just amazing, the change." His IQ tested in the mid-seventies, putting him in the category "educable mentally impaired." But "he had a way with people," Susan recalls. "Once he met you, he never forgot a person. He was very charming and out going, very affectionate and loving. But then in other areas he had a great deal of trouble--paying attention, following directions, understanding what was said to him, comprehending things, staying seated."
    When Moses was six, Susan sent him to get a diaper for her newborn baby. Five minutes later he asked, "What am I supposed to be getting?" "A diaper," she replied After another five minutes, Moses returned with a shirt.   Sometimes he would be able to function in a relatively normal way. At other times, his brain would seem to short-circuit, particularly under stress like fatigue, cold, or hunger. "He would go out in the cold without gloves, and people would call me and say, `We have your child at our house. We found him walking without gloves, crying, and we brought him in. His hands are numb,"' Susan says. "He wouldn't realize how cold he was until it got too late. He would have earaches so bad his eardrum would rupture, and he wouldn't tell us until right at that point. He would be in bed, sobbing. He wouldn't even come down and tell us."
    Susan described Moses' symptoms to various health care professionals. None recognized his FAS. At age eleven, however, he was diagnosed with attention deficit hyperactivity disorder (ADHD) and was put on Ritalin. Moses responded well to the medication. His teacher called to say she couldn't believe this was the same child. Off came the headphones, and Moses emerged from his cubby. Able to absorb and filter information more normally, he transferred to Clague Middle School. Then, at thirteen, Moses began setting his bizarre fires. A mental health assessment concluded that his behavior wasn't malicious or sociopathic, but an "impulse disorder." Moses' doctors switched him from Ritaiin to an antidepressant, imipramine, which seemed to help.
    With supportive and understanding teachers, Moses continued to progress academically. In middle school he had a girlfriend who was severely dyslexic. He was able to read fluently but couldn't understand the content. She couldn't read, but she could understand. He would read things to her, and she would tell him what they meant. Moses moved on to Huron High, held a job at Meijer for two years, and was even in a play at Performance Network. Then, "at eighteen, he began to go on and off the imipramine," recalls Susan. "At this point, I think, he began drinking. He began to smoke cigarettes. Very quickly he started to really fall apart. We noticed strange behavior."
    Moses became depressed and began to sleep with a butcher knife under his pillow. One day his mother found him walking up and down the street carrying it. When she asked why, she says, Moses told her "he was carrying the knife in case a child had a string that was caught around her neck and needed him to cut it." It appeared he was thinking about a tragic accident a few years earlier, when a child was strangled after the drawstring from her hood caught on a slide. Even so, Susan recalls, "it was very scary, and we couldn't stop it, because we couldn't get him to take the imipramine.
    "I called the police and said, 'Something is wrong with my son. This isn't normal. He has a history of fire setting, and I'm afraid. I don't think the neighborhood is safe from him. Would you please take him to the hospital?"' But Moses wouldn't go voluntarily, and the police explained that while his behavior was strange, it wasn't strange enough for him to be hospitalized against his will. Three days later Moses used gasoline to light a fire at a neighbor's home. The residents were out of town, and if they hadn't had fire-retardant carpeting, the blaze would have been massive. Moses himself called 911 to report the fire. Questioned by police, he denied responsibility-but the next day he disappeared with a stranger and resurfaced in another city. He approached a police officer to say that he was lost and to admit he'd set the fire.
    Moses was tried and sentenced to six months in the Washtenaw County Jail. At his mother's request, Barb Wybrecht visited him there for an FAS assessment. Wybrecht finally made sense of Moses' peculiar web of symptoms. The jail staff was very cooperative, and his mother was able to get him back on imipramine. A couple of times she had him put in solitary confinement. He didn't like it, but she felt it was necessary for his own protection. "I knew people could take advantage," Susan explains. Even at age eighteen, she says, her son was so naive and impressionable that "he would do anything anyone asked him to do." "He still believed in Santa. The saddest thing was the Christmas before he went to jail, he was still leaving cookies and letters for Santa."
    Michael Dorris's 1989 book The Broken Cord is the best known popular treatment of FAS. An eloquent and depressing chronicle of Dorris's struggles with his adopted son "Adam," the book also details the virulent destruction wrought by alcohol in some Native American communities, particularly among the Lakota Sioux. Adam suffered from seizures, severe language problems, and brain damage so pervasive that he never learned to cross streets safely. Not long after the book was published, at age twenty-three, he was struck by a car and killed.
    Many parents of FAS/FAE children, and the professionals who deal with them, were troubled by The Broken Cord. Some parents, mistakenly assuming Adam's extreme case was typical, were so terrified they tried to return their adopted children. The picture was further clouded in 1997, when Dorris committed suicide after being accused of physically or sexually abusing four of his other children. After his death, Dorris's estranged wife, author Louise Erdrich, described his history of suicide attempts, alcoholism, and violent outbursts. Nonetheless, Dorris's book helped bring home the reality of fetal alcohol poisoning. Even after FAS was medically defined in 1973, many professionals had been slow to recognize the problem. "We had at least five or six high-quality therapy people tell us the different ways we were failing in our parental duties," recalls Eric Anderson. Anderson and his wife, Marilyn, adopted a Sioux child in 1968, three years before Dorris adopted Adam.
    Scott was less than ten months old when he came from South Dakota to Michigan. The adoption was part of a coordinated effort between social workers in Michigan and their counterparts in South Dakota to move Native American children from the social services system there into good homes in other states. According to Eric, every child he's aware of from that program would eventually be identified as FAS or FAE. It doesn't appear that the children were given up for adoption simply because the birth parents recognized their disabilities. Instead, the adoption of so many FAS/ FAE kids reflected how widespread alcoholism was in the Native American population and how vulnerable alcoholic women are to unplanned pregnancies.
    The Andersons were initially told that Scott's mother gave him up for adoption when he was a month old. Only later, Eric says, did they learn that "that decision was prompted by Children's Protective Services' taking him away from her." Because Scott was the Andersons' first child, they did not always recognize how unusual his behavior was for an infant. When he was around two and a half years old, Marilyn says, "we discovered that he 'was wandering around the house in the middle of the night. That could have been one of our first clues, but we didn't know what it meant. The pediatrician didn't know what it meant."
    As a young child, Scott had trouble straightening up his room. "On a beautiful summer's day, when he could have gone out and played when he finished straightening up his room, he would spend the entire weekend straightening up his room," says Eric. "He never got anything done, and it didn't seem to bother him." Marilyn was frustrated; to her, Scott seemed to be disobeying willfully. This is a common assumption about FAE kids, because their performance can be very inconsistent--one day they might be able to recite their alphabet, the next day not.   Scott was quiet and kept to himself in early elementary school. In fourth grade, however, a teacher had him tested for learning disabilities. Marilyn was furious, but the results showed Scott to have a "normal" IQ. (If he had achieved the same score today, he probably would have been diagnosed as learning disabled.)
    When Scott was nine, his birth mother died. A letter from the Bureau of Indian Affairs, notifying him of a stipend from her grazing rights,. also listed the names of several relatives. The Andersons connected with Scott's half sister, who had been adopted in Grand Rapids. Afterward, Scott's aunt contacted the Andersons. She told them Scott's mother had had a habit of drinking about a quart of liquor a day. Although it was obvious Scott needed help, the Andersons found it hard to focus on his problems, because they had their hands full with his younger sister, Sarah. Sarah, who also was adopted, "really provided a smoke screen for Scott, because she was very abrasive," recalls Eric. "He was very easy to get along with." Scott started using drugs in middle school, but "it took us a long time to figure this out," admits Marilyn. "That's unfortunately pretty typical. Some people see it as self-medication because of frustration, not fitting in, not being able to do what's expected."
    In seventh grade Scott was diagnosed as "emotionally impaired," a then-popular term that Eric describes as "the garbage, can for `This kid probably needs services, but we can't quite figure out why."' He repeated the eighth grade twice and finished with exactly the same scores in every class. "The second time they passed him," his father says. "You can't keep people in the eighth grade. forever."
    Like Moses, Scott had an extremely high threshold for pain--a symptom of central nervous system damage. He'd perform daredevil stunts on his bike, hitting cars and trees. Once he showed up at his parents' door with his arm broken in two places--his father recalls that it looked as though he had an "extra joint." "If I had broken my arm like that and looked at it, I would probably faint," says Eric. Al a teenager Scott would ride his skateboard on his back, headfirst--so you don't know where you're going, you can't see anything, and your head is the first thing that's going to hit," summarizes Eric. Such behavior by FAS/FAE kids may look suicidal, but it actually stems from a profound inability to understand consequences. Recalls Eric, "I spent my life saying, `What do I have to tell him not to do today?"' "These are extremely difficult children to parent," says Marie Heys of the U-M FAS clinic. "It is never surprising when there are behavioral problems."
    When Scott was thirteen, Eric found a syringe, and Scott was sent to drug rehab. At fourteen he was caught stealing a motorcycle and ordered committed to another substance abuse treatment center. Then came charges for shoplifting and joyriding. "You get to the point where you dread to see police cars, people in blue uniforms, and have the phone ring," says Eric. Scott passed through a series of treatment centers, incarcerations, and unstable living situations. He fathered four kids (including one set of twins) by three women in eight months.
    Over the years, Scott was diagnosed with attention deficit disorder, depression with psychotic features possibly induced by crack cocaine use, and borderline personality disorder. "It's fairly typical to collect long lists of diagnoses, because they present differently on different days," says Eric. Marilyn had done some volunteer work with Barb Wybrecht. When Marilyn described some of the problems she was having with Scott, Wybrecht suggested an FAS evaluation. Five years ago, U-M physician Sheila Gahagan diagnosed Scott with "nonprogressive brain damage, alcohol exposed."
    With help from the Association for Community Advocacy, Scott's parents were able to get him on Social Security disability and find him a subsidized apartment. He did all right for a while, but then the liquor bottles started to appear again. Marilyn began coming over weekly to clean the apartment. Fearing he would lose his housing, they finally hired someone to clean regularly.
    Like Moses, Scott has a kindness and generosity coupled with a dangerous lack of discernment. He had been bringing homeless people to his parents' house on and off for years. Scott started a relationship with a young woman who was severely mentally ill and addicted to crack and alcohol. He moved her into his apartment. "I could see that things were really going downhill for both of these kids," says Marilyn, who tried unsuccessfully to initiate a dialogue with the woman's caseworker. Four years ago, in an alcoholic blackout, Scott attacked his girlfriend. In March 2000 he was sentenced to forty to sixty months for assault with intent to commit rape. He's been in prison ever since.
    Unlike the Campbells and the Andersons, Brenda and Ken Turner knew that their daughter's birth mother was an alcoholic when they adopted Isabel in 1973. But they had no idea how serious the implications would be. "At the time, we didn't think about it for a minute," says Brenda. The ninth of ten children born to a Native American mother, Isabel was three and a half years old when the Turners adopted her. Ken, a minister, and Brenda, an educator, were self-described "children of the sixties" committed to providing a home for an older, minority child. Isabel was given up for adoption at birth, and the Turners' was her fourth home. It was immediately evident that she had some developmental delays, but given her history, they assumed it was trauma related and figured she would catch up. But there was also a cluster of other symptoms.   She couldn't label colors. Thinking she might be color blind, they took her to a pediatrician, who said she wasn't. "But in lots of other ways, she seemed not precocious, certainly, but more or less in the normal range," recalls Brenda.
    As is typical with FAS/FAE children, Isabel's problems really began to emerge when she hit school. She attended a Montessori kindergarten in Ann Arbor and repeated kindergarten after the Turners moved to Seattle. "In first grade, then, we really began to see problems, because she just couldn't read," says Brenda. Isabel also "had a lot of trouble socializing with peers, and missed social cues."
    A psychologist who tested her was "totally mystified," Brenda says. A scatter pattern of spikes and dips yielded an IQ of 100--average. Isabel could remember some things but not others, and clearly had problems retrieving information. She could understand a concept like sunrise, but would forget a word like breakfast. "If I would say, `Go upstairs and pick up your shoes and come downstairs,"' says Brenda, "she'd get to the stairs and couldn't remember any of the things that I'd asked her to do."
    The Turners' pediatrician put them in touch with FAS pioneer David Smith, who diagnosed Isabel's syndrome. In addition to small, close-set eyes and an atypical finger development pattern, "she had just matchstick arms and legs, painfully thin," says Brenda. "She wasn't unhealthy, but you would have noticed these just really skinny little legs, which is another marker."
    Although the diagnosis explained the root of Isabel's problems, "they were still just doing the very earliest work, so nobody was able to give us advice on how to help her best," Brenda recalls. "So we just sort of bumbled along for all of her life." Trying to find a successful educational setting, the Turners moved Isabel to a private school for children with learning disabilities, back to the public schools, then to a Catholic middle school, and then to a parochial high school. "We were always in schools' and teachers' faces," Brenda recalls. "I got to the place where every year I would just kind of prepare this handout." It detailed what teachers were likely to notice and offered suggestions, like writing assignments on the board instead of just giving them verbally.
    Isabel's high school in Washington valued children of varying abilities, enrolling everyone from the gifted to children with learning challenges. Isabel did well. Then, in her junior year, the Turners moved back to Michigan, where they enrolled her in a public school in Farmington Hills. The biggest obstacle to her graduation was the math requirement. "This is someone who on a good day today cannot tell you what eight times seven is," Brenda says. "She can do some simple addition and subtraction, but she really can't do any multiplication and division." Still, with incredible daily support from a teacher and with the use of a calculator, she was able to graduate. "My strategy was to figure. It's real clear there are a whole lot of things she can't do--what can she do?" Brenda recalls. "It was very clear from early on that art was something she could do."
    The summer after high school, with Brenda paving the way, Isabel put together a portfolio and was accepted by the Center for Creative Studies (now the College for Creative Studies) in Detroit. She attended for a year and did fairly well. Because Isabel's Native American heritage was becoming increasingly important to her, she then transferred to the Institute of American Indian Arts in Santa Fe, New Mexico, where she completed an associate's degree. Once again, getting around the math requirement presented problems up to the eleventh hour. "I was in their faces and kept trying to come up with alternatives, and eventually, one week before graduation, they said she passed. And who knows," says Brenda, laughing good-naturedly. "I think they were tired of hearing from me."
    Then Isabel announced her desire to attend the University of Alaska at Fairbanks--a four-year college with a core curriculum including math and foreign language. "I'm thinking, 'We can't do this--this is just impossible;"' remembers Brenda. "But I'm an academic. I know how to read catalogs, and 1 know how to play with the system." Isabel is Athabascan Indian, and her people's native language, Kaska, is disappearing. Knowing that a traditional foreign language course was beyond Isabel's grasp, Brenda "did some nosing around" and located a Kaska language expert in the Yukon who agreed to take Isabel on for a summer experiential course. Brenda visited the university frequently and made good friends with Isabel's professors, who looked out for her. Isabel also got tutoring and social support from Rural Student Services, an office that, Brenda says, "was really designed for Native American kids who came from little villages to the university and had never been in the city before." With "phenomenal help," Isabel graduated with a teaching certificate. She now teaches art at an urban elementary school. But even at age thirty-four, she continues to struggle. Says Brenda, "We're still in the parenting mode."
    Donna Sabourin heads Washtenaw County's Community Support and Treatment Services (CSTS). Several years ago, Parents Supporting Parents, a network of families with alcohol-affected kids, asked Sabourin to attend one of their meetings. Founders Vern and Betty Soden, adoptive parents of an FAE child, have been instrumental in educating both the community and the local agencies about FAS/FAE. "What-we realized through the dialogue was that it wasn't that we were unwilling to provide the services," Sabourin recalls. "In some areas there's been a lot of progress made around recognizing and diagnosing this disorder--but as far as really knowing how best to help the person, there's still not a lot of information."
    Two years ago, CSTS hosted the area's first FAS training conference. "A big part of the conference was parents who had really studied this on their own and gotten up on all the latest research, and then also had their own personal experience," Sabourin says. "The parents were actually teaching the professionals about the nature of the disorder and what they needed." Other advocacy groups joined CSTS in sponsoring follow-up training sessions last year and this past October.
    But even with strong family and professional support, life will always be precarious for FAS/FAE kids. Moses Campbell is living proof of how quickly, and disastrously, things can go wrong. Between the ages of thirteen and eighteen, Moses had done well. Then, a few weeks of not taking his medication and a small amount of substance abuse locked him firmly into the criminal justice system.
    After completing his jail sentence, Moses was released on probation and returned to high school. But "he was changed," recalls his mother, Susan. "Now he'd been in jail for six months, and he wasn't the same sweet kid. He was having more problems in school and talking about jail to these young mentally impaired kids that he was in school with." He wasn't obeying his mother as readily anymore, either. As he reached the cusp of legal majority, she was losing control.
    Counseling was a required part of Moses' probation. CSTS picked him up the first week and took him to therapy. The next week Moses was supposed to take the bus. He missed the appointment; he said he got lost trying to get there. But he missed the following appointment, too, and then disappeared for a week. "He'd never done anything like this," Susan remembers. "I thought he might be dead." He reappeared just in time to check in with his probation officer, but then he missed yet another CSTS appointment. At that point the counselor flagged him for violating his probation. Moses was sentenced to three to ten years in prison. That was seven years ago, and he's still behind bars.
    Prisons operate on rigid, punishment-based rules. The system assumes that prisoners can understand and avoid negative consequences and like many other FAS/FAE kids, Moses couldn't. Once incarcerated, he climbed rapidly through the security levels. Another inmate, taking advantage of his naivete, asked him to steal a radio. He was supposed to go into the owner's cell, wrap the radio in a shirt, and leave. Moses forgot the shirt and walked out with the radio in plain sight. The prison stopped giving him imipramine because he was holding it in his cheek and trading it far cigarettes. He wrote an inappropriate letter to a caseworker who had been nice to him. "He confuses sexual and nonsexual," Susan says. "When he likes someone, particularly a woman, he has no discernment." The caseworker brought charges. "He got bumped up a couple of security levels for that," says Susan sadly. "She felt very threatened." Susan admits that she can easily understand why the woman was so alarmed. But it distresses her that the prison system makes no allowance for Moses' disability. "They don't seem to have any awareness of that. They just keep having the same expectations of him that they do for everyone else, and he can't meet those."
    After participating in a riot at Ionia Prison, Moses was sent to the Alger Maximum Correctional Facility in the Upper Peninsula. He has been in and out of solitary confinement, sometimes for months, and Susan hasn't seen him in three years. A former Alger inmate told a friend of Susan's that Moses was sexually involved with other prisoners. "I'm not sure if it was consensual or if he was raped," she says. Susan is encouraged that over the last ten months Moses hasn't gotten into any new trouble. She hopes that he may finally be learning how to work with the system. But FAS expert Barb Wybrecht says that's unlikely. Wybrecht says that disabled inmates function better at higher security levels because choices there are so limited, their lack of judgment doesn't come into play. But once they regain some freedom, the same problems that increased their security status resurface.
    Barring another criminal charge, Moses will be released in 2006. But when he does get out, Susan says, "I don't know what we'll do with him. He set a fire right down the street. The neighbors are scared of him." Before Moses went to prison, Susan asked his caseworker whether he could be placed somewhere if he didn't return home. Her answer, Susan says, was "If you put him out, he will be living homeless in downtown Ann Arbor. That's where our clients end up."
    Not all FAS/FAE. kids face such a bleak future, especially those who are identified early. Recent research in animals has confirmed. that training can compensate for some alcohol-induced deficits. But even with prompt diagnosis and help, the brain damage is permanent. And even though Smith and Jones did their pioneering work thirty years ago, the full scope of the problem may still not be known. For instance, experts now suspect that a significant number of children diagnosed as ADHD and learning disabled are actually fetal alcohol affected. With limited prospects for treatment, prevention is a top priority. To reach at-risk moms, the U-M's FAS diagnostic clinic holds lectures at the Washtenaw County Jail. Since FAS/FAE cuts across races and socioeconomic levels, Parents Supporting Parents also does presentations at local high schools.
    Some advocates say that women of childbearing years should not drink at all. They note that the characteristic FAS facial features result from damage done during the first month of pregnancy when most women are unaware that they have conceived. Although alcoholics remain at greatest risk, social drinkers, too, can have affected children. Studies have found subtle but significant impairments in children born to women who consume as few as one and a half drinks per week. For any woman who can become pregnant, advocates say, the rule for preventing FAS is starkly simple: zero alcohol equals zero risk.

Psychiatric Documents Can Aid Mentally Ill in Crisis
Bruce T. Seeman, Newhouse News Service- 11/30/2003

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.