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.