dying with her rights on
By Laurie Turley
In the zeal to impeccably protect the patient's civil liberties and rights, an increasing number of troubled and psychotic patients are what I choose to term dying with their rights on.--Darold A. Treffert, M.D.
The following story provided by Laurie’s anguished sister demonstrates the tragic barrier that current Health Insurance Portability and Accountability Act (HIPAA) regulations place between persons affected by serious brain illnesses, including schizophrenia, and access to effective treatment that could be monitored and augmented with the support and care of family members. This problem is most pronounced when the brain illness causes a lack of self-awareness of the disease, a condition known as anosognosia. The National Shattering Silence Coalition’s Points of Unity include its position that HIPAA is in need of modification to explicitly allow the sharing of information about diagnosis and treatment between healthcare providers and families of adults who present with unstable serious brain illnesses.
My sister, Carol, was a high honors student in high school, graduating valedictorian in her senior class and receiving a full scholarship to study journalism at an Ivy League college. Something happened while she was away at school, but my brother and I, being several years younger, weren’t privy to the hushed conversations between my parents and older siblings about just what was the matter. I knew Carol could be volatile and prone to outbursts of anger and irrational reasoning. I also knew she was creative and full of ideas about the world that I found intriguing and inspiring.
I Did Not Realize for Years That She Was Ill
I left home at seventeen when I went to college. I never really lived with my family after that, only returning home to visit on holidays. By then, Carol was living with a man with whom she bore a son. She held jobs—a staff writer for a magazine and a writing teacher at the local university. She wrote beautiful poetry. Writing and books were her love and her life. While family gatherings were often uncomfortable and awkward when she was around, I wasn't present to witness the worst of her behaviors. I was unaware of just how seriously ill she was and only knew she was “different.” I loved her, loved her writing, loved her creativity, and loved my sister for herself.
It wasn’t until several years later, after I had married, lived three states away, and my second child was an infant, that my mother called to tell me they had to have Carol committed to the state psychiatric hospital. Just like my mother's own brother, my sister was involuntarily admitted to the same state hospital where my uncle had lived many years before his death. I learned that my sister had inherited the family illness: schizophrenia.
Details of the years following that first hospitalization are sketchy, at least from what I knew. On trips home to see my family, I visited Carol in the hospital, in her home, and in the outpatient mental health center where she introduced me to her friends. I cried with her when her twelve-year-old son was removed from her home by Child Protective Services and put into foster care, where none of us were able to see him due to legal restrictions and a “conflict of interest” of our relationship with her. I rejoiced with her when she finally agreed to stay on medication and when she found a psychiatrist who was willing to work with her—in her words, “like a tinker, an alchemist”—until they found just the right combination of medication that would keep her stable for the next twenty years.
Even though she was medically stable, Carol still struggled daily to find her place in a world that couldn’t see her as the beautiful soul I knew. Most saw her only as a mentally ill person. Medication kept her stable, but she never fully recovered. She never broke free of schizophrenia and many of the symptoms that medication could not erase. Sometimes the medication failed, and she regressed as her medication was readjusted.
Carol aged prematurely, lost her teeth, was at times morbidly obese, and developed diabetes. She often had a dulled expression. She was violently assaulted in her apartment by someone who took nothing but her medication. Yet she maintained her generous nature and her creative drive to write poetry and fiction. I collaborated with her on compiling some of her poems, accompanied by my photographs, into a hard-cover book. In the spring before Carol died, we self-published this book and gave several copies to friends and family. She was even able to sell a few of them. It had always been her dream to be published, and even though this wasn’t the same as having her poems accepted by a large publishing company, she felt her dream had come true. It was the last good thing I was able to do for her.
Whole for a Time, But Then She Needed Help
A few years before Carol died, we began having long phone conversations. I was struggling with a crisis within my own family, and she alone was willing to listen to my problems any time, day or night. She talked me through many of my darkest times, having firsthand knowledge of the grief and helplessness that comes from seeing someone you love suffer. In exchange, I asked her probing questions to help me understand her disease. She generously shared insights into her illness and tried to help me understand what was impossible to comprehend. She was wise, giving, and forgiving. She was my rock of wisdom and support. When we spoke over the phone, my sister was complete and whole.
I visited Carol in her brand new apartment, which had been subsidized and furnished by charitable agencies. It was bright, with high ceilings, wood floors, and big windows. It had two bedrooms and clean furniture. I spent a weekend with her. We cooked meals and went shopping. She talked about wanting to teach a writing class again. I had every hope and reason to believe that my sister was going to thrive.
A little less than a year later, Carol began to sound halting in our phone conversations and sometimes rambled without direction, or her speech was slurred. She told me she had begun to hear voices again and that she was afraid she needed to have her medication adjusted. I encouraged her to do so soon. She promised me she would. She shared that she hadn’t seen her psychiatrist in some time but was going to make an appointment.
I now know that she probably never followed through. I believe that she had regressed too far into the illness to be able to make that rational choice on her own. Serious brain disorders such as schizophrenia take away a person’s ability to reason.
My own life situation took a dreadful turn. I was preoccupied with trying to cope with things at home, so I didn’t get to visit her that whole next year. When I finally did, nearly a year after she had moved into her new apartment, I found her lying naked on the couch. Her apartment had transformed from a comfortable, homey, bright space to rooms full of clutter so deep I could hardly make my way through. Unwashed dishes and molding food filled the sink and covered the stove. Dirty laundry, messy counters, and filthy tabletops created unsanitary conditions.
They Said She Was Her Own Guardian and Kept Me From Helping
How did this occur? I had to get help for her. With the help of Carol’s adult son and some other siblings, I got the numbers of her case manager and her former treatment providers. None of them would talk to me, except to say that my sister was her own guardian and had the right to refuse treatment, which she apparently did. Each of them told me that she was entitled to make her own choices, and there was nothing I or anyone else could do.
I knew because Carol told me, that she feared being sent “back up to the Hill,” which was what the state psychiatric hospital was called. I knew she feared to be in a locked ward and forced into treatment. I knew she had relapsed into a psychosis that rendered her unable to care for herself. I could not prevent her downfall, nor could I convince her to seek the treatment she desperately needed.
A visiting nurse knocked on the door while I was there to deliver her insulin, which Carol was responsible for administering to herself. The nurse tested her blood sugar levels. They were way above normal. While my sister sat outside on the deck and stabbed her arm with the needle of insulin the nurse had given her, I went with the nurse into the apartment. Amidst the filth, we discovered several vials of unopened insulin, evidence that she hadn’t taken her diabetes medication. It was obvious that she also hadn’t taken her antipsychotic medication.
I begged the nurse to help me help Carol. It was obvious that she needed to be on medication and back in treatment. If I could just make the nurse see and acknowledge that my sister was in need, surely she would file a report and help me get my sister into treatment. But the nurse repeated what every other care provider I’d called in the past month had told me: “Your sister is clearly in need, but she’s her own guardian. If she refuses treatment, there is nothing anyone can do.”
I left Carol in that horrible state, in that unsanitary, unsafe condition, with my heart broken. I returned home, promising her I would continue to call her and stay in touch. I promised myself I wouldn’t give up trying to persuade someone—anyone—to get her out of there and into treatment.
A week or two later, I received a phone call from Carol’s son. She had been taken by ambulance to the hospital with a serious and invasive lung infection. During the several weeks that she was under medical care, she resumed her psychiatric medication, and her ability to reason returned, even while her physical health continued to decline.
“They Should Have Let You Help Me. I Wasn't In My Right Mind.”
In one of our last phone conversations, Carol shared that she felt life returning within her, that she felt like she was awakening from a bad dream. She said to me, “I don't know how I got so bad. I was doing so well. How did things get so bad?” I told her we all knew she was deteriorating and tried to help her, but she had refused help. There was nothing we family members could do.
Her next words were among the last she ever spoke to me: “They should have let you help me. I wasn’t in my right mind.”
Not long after that conversation, the infection in my sister’s lungs—which I have no doubt began as a result of the unhealthy condition of her apartment—progressed into severe pneumonia. Despite the doctors’ efforts, they couldn’t clear the infection. After a week of intensive care, it developed into sepsis and took her life.
All our efforts to rescue her from descending back into the illness she couldn’t manage on her own had been futile. It took an invasive lung infection to get her back on antipsychotic medication, but it was too late to save her life. The laws designed to protect her civil rights were the very laws that prevented those who loved her most from helping her when she was unable to help herself.
Why Do Laws Deny the Most Seriously Ill Their Right to Live?
“They should have let you help me. I wasn’t in my right mind.”
Those words will haunt me until the end of my days. Those words are why I believe that families need to be listened to. Families, regardless of whether or not they have legal guardianship, should have the right to intervene and get their loved ones to humane and sound mental health treatment when they see the need. They’re the ones who see the signs first and most clearly.
My sister’s untimely death is why I believe that so many people who are left to “die with their rights on” are, in truth, denied their right to live because of our current restrictive laws. Carol’s last words to me continue to be my inspiration. They inspire me to fight for treatment for the seriously mentally ill who are unable to help themselves.
“They should have let you help me. I wasn't in my right mind.”
by Carol A. Snyder
Butterfly, stay away from my net,
It’s there on the ground.
I will not pick it up.
I will not chase after you as others do.
I would chase your colors, lovely lemons,
Butters, purples, monarch’s orange
and blacks away from the flowers
that others would snap their nets over.
Send you after the freedom
that you surely deserve.
I do not like being trapped.
Why should you?
THIS IS MY HEART, TAKE CARE
Because you’re probably going to squeeze my heart like clay,
I make it mud and send it to the river
to wash clean over stone and pebbles
to make it blue and green as the river water
fresh and sweet as river-rinsed air
And hope you’ll see it, what the river pours forth, as good.
even though you’ll probably never recognize me.
Even then, I wish this good for you.
To all reading this blog post, please, if you care about those living with serious mental illness -- whether you are someone living with serious mental illness, someone who cares, a family member/caregiver, or a mental illness professional -- join us. We need your voices.
Treffert, Darold A. “Letters to the Editor: Dying with Their Rights on.” American Journal of Psychiatry 130, no. 9 (1973): 1041. doi:10.1176/ajp.130.9.1041.
why i keep talking
By Alison Monroe
They want you to keep quiet. Talk anyway.
We family members of the sickest people with mental illness need to speak up because we have firsthand truth very few people have.
Unlike most people, we know mental illness is real. We know mental illness is not just the emotional issues and trauma and dysfunction that most people have. Our family members have a physical illness that affects their brain. They may have trauma and dysfunction and soul-sickness in addition to a brain illness, but because of their brain illness they cannot be made morally responsible for their own survival.
It Took Me a While to Know What I Was Talking About
D is 24 now, a schizophrenic meth user. For years the system has regarded D's problem as motivational, and it still wants to see it that way. The hospitals she stayed at tended to define her problem as drug abuse with some adolescent rebellion mixed in. If they could start her on medication for her brain, and impress on her how important it was to stay off drugs, she would be "in recovery" and thus able to live independently and maybe even get a job, and ready to be discharged from any hospital she was in. I followed her for five years, while she was discharged dozens of times—although as I describe below, the system didn't make it easy for me to do that—and during that time I began to understand how profoundly wrong the system's perception was.
I know now that schizophrenia often doesn't show up till the late teens. Her older brother had a schizophrenic break the year before she did; it gradually became obvious to all of us that there was something about him that would make him hard to live with and very hard for him to get a job. But we didn't understand what it was or who could do anything about it.
D ran away from home one Christmas Eve and turned up months later in a group home for teenagers. Someone had diagnosed her with schizophrenia and prescribed Geodon for her. After a month she pronounced herself cured and quit taking it. She commuted to an adult school and at least occasionally took meth. She was kicked out of the group home because she hit someone else. For the next five years, except for brief periods in other group homes, she was either in locked facilities or homeless.
Once during this five-year odyssey, D was released from an emergency psychiatric hospital—she had been in and out of them (5150'd, as we call it in California) some 15 or 20 times—and we were walking around in the City. We went into Whole Foods (a high-end grocery store) so we could use the clean, spacious bathroom there (bathrooms in the Tenderloin are pretty scarce). Reminded by a display of dollar sodas, she told me an anecdote about voices.
The last time she was in that Whole Foods, she was thirsty and saw a similar pyramid of sodas. She remembered she had no money. But a voice told her, “It’s all right, I’ve got it, it’s paid for.” So, gratefully, she took a can from the pyramid, opened it, and took a sip. Quickly a security guard grabbed her, twisted her arm up behind her back, dragged her into a back room, threatened to call the cops, and told her never to come into the store again. Whoever had told her the soda was paid for was nowhere to be found.
Thus I began to understand that a mentally ill person cannot be blamed for what their voices tell them to do. Telling people them to take responsibility for their actions is no substitute for treating them or for keeping them safe. Social worker Lynn Nanos, for example, understands this problem from eleven years of experience; she has dozens of anecdotes like this in her book Breakdown. It took me a couple of years to understand how totally illogical it is to make the sickest take the most responsibility.
During two horrible summers she was homeless (between short stays in emergency facilities) and slept in other people's tents or boats in several counties. She understood she had a government job where they paid her millions of dollars in secret bank accounts as long as she took meth every day. She had a case manager in our county—I was told she had "the highest level of care"—but to do anything for her they would have to find her, and as she had lost or sold her phone that did not happen.
Sometimes she would show up at my house to sleep, terribly thin and sunburned, talking about things I didn't understand and listening to people I couldn't see. She would sleep, but often she would bounce up again after a couple hours and say she had to go see or do something, and not come back for weeks. One time she stayed a couple days, and I was able to get her case worker to come over. He listened to her while she was lying in bed crying. D told him something that was hard for me to hear and hard to take in. She said that she had to take meth every day, at least a little bit, or her unborn baby would die.
I tried to explain to the people at the County that no weekly meeting with a social worker was going to be able to help D. I knew she could have no lasting hospital stay unless she was "a danger to herself or others,"but wasn't she a danger to her imaginary unborn baby? Surely the police would understand if they heard about this belief. Anyone would understand she had to be taken off the street, away from meth.
These two summers convinced that we were doing her no favor by giving her the chance to take meth. I saw her wandering around a park with only a shirt on—she told me it was a dress. I saw men following her around. She told me more than once that she was raped by strangers. She told me she washed out a meth pipe and injected the washings into herself. Her neighbors in homeless encampments complained to me that she was in danger and I needed to "take her home."
D is taking medications in a locked inpatient facility now, and on meds, but her delusions continue and have gotten worse. Her illness has progressed. She hears voices through chips in her head, and talks to them and to real people at the same time. A voice tells her meth is good for her or for her current imaginary unborn baby. She is sure her doctor told her she needs meth to stay alive.
While she has these ideas, it is not kind to her to give her the chance to take meth, any more than it would be kind to give an Alzheimer's patient the chance to hike on the freeway, or a drunken person the keys to a jet airplane.
It took a long time for me to see justice this way, and many people working in the mental health system still resist this vision. They think anyone, even those in terrible danger, who does not choose sanity and sobriety has a right to reject both.
The System Does Not Want Me To Talk
HIPAA (the Health Information Portability and Accountability Act) limits the information health providers can release. Our third Point of Unity in the National Shattering Silence Coalition is HIPAA reform: "Clarify and improve HIPAA policies to include family rights and prevent harm that occurs when parents who provide care are shut out of the process."
Our system interprets HIPAA pretty narrowly. Parents can't get information without a HIPAA release. I've tried to visit her at hospitals where nobody was able to tell her whether she was there or not, and struggled to understand case workers who were trying to alert me to her medical state and location without breaching some rule. Clients are not encouraged to sign HIPAA releases, and D told me hospital staff have actually advised her not to, telling her she's more likely to be "locked up" if she does. For parents to get information, clients have to sign a new release for every change in case management, every new stay in a facility, and for every different department in the overseeing agency.
Reforming HIPAA, though crucial to our struggle, has been met with resistance. Parents are up against a system whose beliefs, habits, bureaucratic interests, profit motives, and long-held idealism unite to keep parents out of the process. If the system didn't have HIPAA, it would have to invent it.
In my case, the system invented its own version of HIPAA when HIPAA wasn't strong enough to keep from me the information I wanted. Eventually, they quit accepting the HIPAA releases D signed even when she signed them. Her county conservator said that they could legally override these releases. I noticed that these withdrawals of permission happened when she was taken off Clozaril and I wanted to get her back on it (she does best on Clozaril). On the last occasion they withheld information, they accused me of violating HIPAA for telling her past and future providers what was going on with her treatment and her symptoms. Parents of course can't violate HIPAA. Nevertheless, D's caretakers persuaded her that I was in danger of being in legal trouble if she didn't sign a document cutting off information to me. After she signed that document, she signed another HIPAA release; but they ignore that release.
Why Do They Want Me to Keep Silent?
It's probably complicated. They want you to keep silent about what's happening with your loved one. It’s so much easier for everyone—except for you and your loved one.
I can understand that they don't want to be held accountable. No one working in the system wants to be blamed for the totality of disasters that happen daily. They took these jobs to help people, not to take the blame for a broken system and its broken parts. Unfortunately the result is that no part can be blamed and no one has to be accountable.
And many people working in the system seem to want to believe that everyone can recover with only voluntary measures. Workers are immersed in their jobs and find it hard to perceive a truth that is dissonant and makes them uncomfortable, even miserable. That some clients don't get better in weeks or months, or ever, and make horrifying, deadly decisions: no one wants to hear that.
A highly respected patients' rights advocate advised me, during this furor about HIPAA releases, not to share D's story without her involvement.
The advocate said:
"It is of serious concern to everyone involved in D’s recovery that her private and personal information has been shared far and wide with many many people who have no business hearing about D’s illness and her efforts to achieve meaningful recovery."
And again, she said:
"Maybe if you told D why you feel it important for her recovery story to be told to certain members of the mental health community, she would feel it is empowering to be consciously involved in advocacy efforts. You could help her have a voice, and she would know what is being said about her. To do that would be respectful of her constitutional right to privacy and communicate to her that she is in charge of her life and responsible for her recovery. Can you envision how this could achieve your goals? Can you see how positive and respectful this approach could be?"
I can see this. I wish, I wish, it could work this way. If she could take responsibility for her recovery, that would be wonderful. If she could overcome both her illness and her addiction, and help me write about it, that would be ideal. But if she takes responsibility for her recovery … doesn’t that mean she would also take responsibility for her disease? The idea horrifies me. Should she take responsibility for the effects of leaving her disease untreated, or not treating it the best way?
I've decided the most important thing is to keep her alive. Her life is more important than her privacy.
I Talk to Save Her Life
I talk to the public at hearings about mental health policy, and I send emails to other people involved in her care, to save her life. I don’t blame her for being mentally ill or using drugs, and nobody who stigmatizes her for this fully understands her situation. It’s not her fault she has a brain illness that has gone untreated for many months at a time. I believe I have gotten her another couple of years of life by speaking out about her situation and making clear to people that the danger she is in is not her fault. It does her no good to keep her illness and addiction a secret. I’m afraid that the worst thing that could happen to her—still a likely outcome—is that she will be on the street again, helpless, with no one knowing where she is or how to get her back into treatment, or in jail. Protecting her from rape, from injecting bad drugs, from AIDS, from violent interactions with police and others, and from incarceration that would traumatize and stigmatize her even more seems way more important than keeping her situation a secret. And in fact, when she is on the street, she gets better help from peers, police, and the system alike if they know about her mental illness.
I read that last New Years’ Eve, the body of Karina Banta, a woman just D’s age, was found in our county's landfill, having been dumped there by a trash truck from a transfer station not far from my house. Should the San Francisco Chronicle have kept it a secret that Karina had been homeless, mentally ill, and a drug abuser? Not at all; that information is part of her story and it helps the world to understand the danger our children are in.
Many, many parents of the seriously mentally ill tell people about the violence and tragedy their family has suffered. They do that to get help for their children, and even when that help comes too late to save their own child’s life, they do it to help others. See, for example, Dede Ranahan’s blog Sooner than Tomorrow, where parents tell their stories of seriously mentally ill loved ones who have killed other people or mutilated themselves. They tell these stories to save lives.
Khadeeja Morse, the mother of Mikese Morse, who ran over two bicycle riders in Florida in June 2018, has been telling the public the specifics about her son’s illness—to save him from execution. If she had not gone to reporters, to Facebook, and to every official she could find, with a wealth of detail, he would be facing the death penalty as a murderer. Instead, she managed to persuade the state prosecutor and the Sheriff that Mikese was not responsible for his actions and needed treatment. She was right to talk about him. She got him a chance at life.
I need to tell D’s story BEFORE she dies or gets involved in violence that sends her to the criminal justice system.
Sometimes, when you read a news story about a mass murder, parents do speak up, in the hope that people are willing to hear and put together the pieces. They say the person was "struggling with mental illness," they were "discharged with no services," they "fell between the cracks." We family members with firsthand knowledge can break this code so easily. Others will break the code, if we keep talking.
We Have a Chance to Change Things if We Keep Talking
The proponents of the civil rights of all mentally ill have campaigned sincerely for decades and won many victories large and small. Sincere passion drives the patients’ rights advocate I quoted above. The civil rights campaign, however, has overshot to the point where the system would like to pretend that mental illness doesn't exist and that little if any involuntary treatment or containment is ever needed. The passion for rights was real, and now it is misdirected and confounded with all sorts of bureaucratic inertia. But I think we have a chance to direct passion towards survival, treatment, and protection for our loved ones, if we can make people see what we see.
"What would happen if one woman told the truth about her life?
The world would split open." - Poet Muriel Rukeyser