Originally Published: April 28, 2012 9:58 p.m.
This is the fourth in a six-part series that explores challenges people face when they seek treatment for mental health issues. The final two articles in the series explore reasons for problems with care and how to help yourself and loved ones get care that works.
Nick grumbled as his mother Tracy drove him to the Advanced Placement testing center. He had already taken SATs and ACTs - why did he have to take more tests? He hadn't spent a single minute preparing. His mother grabbed his arm and handed him two No. 2 pencils as he got out of the car. She hoped he'd actually sign in and take the tests.
Two months later, the test results arrived. Nick had passed all the exams and therefore earned 16 college credits - he could skip an entire semester of college!
Tracy shook her head. The whole thing was so typical of Nick. In the first week of school, teachers routinely called him the brightest and funniest kid they'd ever taught. But he had trouble paying attention and staying focused. And he really, really didn't like being told what to do - he could make grown-ups' lives miserable. By the second parent-teacher conference, his teachers were always grim-faced.
Nick was so talented, though, that somehow he managed to get by for years. In addition to being an honor student, he played varsity basketball and often talked about being "in the zone" when he played. Charming and personable, he made friends easily and had a steady girlfriend.
Then it all fell apart his freshman year in college. Tracy got a call telling her that Nick had been taken off campus in handcuffs and driven to an emergency psychiatric evaluation center. When she arrived, they told her that he'd had a psychotic episode - he couldn't tell what was real and what was illusion.
Within two days, all the experts she consulted urged her to have him involuntarily committed to a psychiatric hospital for further evaluation and treatment. Completely at sea, facing a child whose behavior made no sense to her, she took their advice - and ended up feeling like Dorothy in "The Wizard of Oz," facing strange territory and unfamiliar dangers.
Emails she sent to family members reflect her disorientation and frustration. Five days after Nick was admitted, she reported that he said that he hadn't seen the doctor and didn't know his diagnosis. The nurses refused to tell him, saying that the doctor was the one with that information. Nick sometimes refused to take his medicine, hoping that this action would force the doctor to come and explain to him what was happening. But if he ever saw the doctor, he didn't remember.
It's possible that the drugs they gave him caused some memory loss - but then, why didn't the doctor write down his diagnosis and give it to him?
In school, Nick had seen the movie "One Flew Over the Cuckoo's Nest," which dramatized mistreatment of patients in a mental institution. Imitating the movie's hero, he started trying to organize the other patients to break out of the unit. He was immediately moved to the most restrictive ward, intended for people who are at risk for suicide - despite the fact that he wasn't. Nick was confined to his room and a guard was posted at his door. Visiting was severely limited.
On Nick's 19th birthday, Tracy arrived in the morning with some donuts and other little treats for Nick. She wasn't allowed into the ward. She wasn't even allowed to come to the door of the unit and hand the goodies over to an aide. They sent two staff members down to the lobby to take the things from her. She didn't know what she'd done wrong.
She asked for a copy of Nick's medical records, hoping to learn his diagnosis. Tracy was a nurse practitioner, and was well connected in the world of medicine. She had access to nationally renowned psychiatrists, leading pharmacists, and other experts. Even though Nick had signed a release giving her full access to his medical records, she was told that she could see them only after he was discharged.
Nick didn't know what the pills were that he was being given. He didn't have ready access to family and friends. He felt as if he were in a prison lockdown. All of these constraints increased his anxiety and paranoia. Tracy had similar feelings. Eight days after Nick was admitted, she still didn't know who key staff members were, who was in charge, who to direct her questions to, or how to get important information.
She found out, belatedly, that there were group sessions in stress management and so forth that might help Nick, but it wasn't clear if he knew about them. The group sessions were announced over the PA system. But for several days he had been confined to his room. Had anyone told him that he was now allowed out? Had anyone drawn a connection for him between attending group sessions and being discharged? Tracy couldn't get answers to any of these questions.
A week after his birthday, she was told that she could get a pass to take him out for as long as she wanted one day. When she returned him to the hospital, she found out that the pass had only been for four hours. Once again, she found herself in trouble for having broken a rule that she didn't know about.
If you are advised to involuntarily commit a family member, questions you might want to ask include:
What is the name of the person who will diagnose and treat my relative? What are that person's credentials?
How quickly will treatment start?
Is there emergency treatment to stabilize my relative before the regular treatment starts?
How often and for how long each session will the person making treatment decisions see my relative?
How do I make arrangements to talk with that person?
If my relative is treated with drugs, how much time passes before a new drug is tried if the first one doesn't seem to be helping?
How do I arrange to see my relative's medical records each time I visit?
If I want to get a second opinion about diagnosis or treatment, what does that process look like?
Who is in charge of my relative's care throughout the day?
If I have questions or concerns, what is the escalation path? (Who do I ask to speak with if the first person I talk with doesn't seem to be in a position to help with the issue?)
How will I find out the facility's policies regarding visitors? Regarding rules for family and friends? Regarding rules for patients?
What steps are taken to help patients understand and remember their diagnosis, treatment plans, rules and so forth, especially if their condition or treatment results in some memory problems?
Once someone is involuntarily committed, how do they get out?
Will insurance cover the costs of the facility and all the people who treat my family member? For how long?
What steps are taken to provide referrals and coordinate care after discharge?
Elizabeth L. Bewley is president and CEO of Pario Health Institute and the author of "Killer Cure: Why Health Care Is the Second-Leading Cause of Death in America and How to Ensure That It's Not Yours." To tell Elizabeth your story or to ask her a question, write to email@example.com.