The following was, in similar form, published in The Marin Independent Journal. We thought we’d also share it here.
In well-heeled Marin County, staggering homeless statistics are visibly apparent in downtown San Rafael, near where I live. And this problem exists in urban areas across the country. The 20 percent, or 263 persons who are chronically homeless, cost the public greatly in emergency room visits, interaction with law enforcement, and incarcerations. In-depth media coverage reports that providing permanent housing and supportive services significantly reduces these costs.
Not clearly articulated are effective, holistic, long-term preemptive approaches. Largely because many don’t think the solution involves us. Or does it?
We know a myriad of factors lead to homelessness: environmental, economic, cultural, and bad luck. Brain disorders—also known as mental illness and includes substance abuse—is a leading cause of chronic homelessness. I bet all Marin’s overpriced housing that the 37 percent of homeless who self-report that they live with a “disabling condition” are underrepresented. Many also have anosognosia, a feature of serious mental illness that interferes with one’s ability to have insight that they are unwell. These individuals don’t accept treatment.
Fortunately, our city’s multi-pronged, reactive approach for current homeless includes a Police Department specifically trained for crises created by a person’s delusional thinking. A myriad of effective city agencies also support the homeless and those with brain disorders to reach independence. Still, a preemptive societal paradigm can address homelessness caused by brain disorders while strengthening community wellness.
It starts with knowing facts about mental illness and fighting stigma. Brain disorders don’t discriminate along ethnic or socio-economic lines. Bad parenting doesn’t cause mental illness either. One in five across the globe is diagnosed annually and an estimated 10 to 14 million Americans live with serious mental illness. Fortunately, brain disorders are treatable. But stigma prevents many from seeking treatment, which is devastating since early treatment equals greater outcomes. Let’s address brain disorders before a person becomes a statistic.
It’s cliché, but nurturing the whole child truly is a progressive investment in the whole community. We know that those lacking education are more likely to become low-wage earners and therefore statistically more likely to live on the margins.
Fostering youth wellbeing is possible through evidence-based programs in public schools. Initiatives fostering a healthy, inclusive school community can make the difference between a student feeling safe in his environment versus one who dangerously isolates. Adequate funding ensures reasonable mental health counselor ratios and also provides paid counselor training, psychological screenings for students, and most importantly that families can receive mental health education and support when symptoms first emerge. Brain disorders are lifelong illnesses that, similar to diabetes, for example, require ongoing management; with treatment, one can live fully.
Other youth programs foster wellbeing too. Studies show sports and enrichment programs promote healthy self-esteem and a sense of accomplishment. Feeling connected to one’s community, whether through sports, or clubs or other enrichment is critically important to young people. Engagement in positive activities reduces anxiety and depression disorder symptoms—possibly delaying onset for those at risk. Art, music, and performance arts provide students with beneficial life skills and tools for expression, valuable for us all, but especially for those who develop brain disorders.
Meditation positively alters brain structure, improves concentration and increases self-awareness, happiness, and acceptance. Schools with mindfulness and meditation curriculum have reported tangible long-term results.
Voters can also effect change by learning about HR 2646, the Helping Families in Mental Health Crisis Act of 2015 and lobbying their Senator to pass it. Importantly, this bill addresses critical roadblocks parents encounter in getting mental health treatment for their child. Presidential Candidate Clinton has also outlined a comprehensive Mental Healthcare Agenda proposing changes needed to guide a loved one from serious untreated mental illness to recovery.
It is likely your city’s many agencies and faith organizations are doing incredible work. If the long-term health of your community matters to you, consider getting involved with a school, an agency, or church; financially support relevant programs serving youth enrichment and intervention. Get informed, lobby your Marin County Supervisor and US Senator and vote. Because this is a big picture and we’re all in it.
Your thoughts are always welcome:
Mental Illness and the Medical Industrial Complex: parent / advocates can be a doctor’s best resource and yet are often undervalued.Posted: August 3, 2013
Proper treatment—talk therapy and appropriate medication—can save the life of a person with mental illness. Often it is a parent/ advocate driving toward that ultimate goal, one met with a myriad of obstacles. Every parent interviewed for our Behind The Wall project had at least one, if not several, hideous experiences with the “medical industrial complex.” We use this term to illustrate the oftentimes bureaucratic, impractical, impersonal, demoralizing system for patients with mental illness and their families. Our last post, Just Another Friday Night in Lock-Down is the story of one parent’s emergency room experience with her son.
Most common problems parents cite were caused by a general “one-size-fits-all” approach and more specifically, doctors who did not value the medical histories and insight parent/advocates could provide, health insurance policies that limit care or end treatment prematurely, obscenely long wait times in emergency rooms, a dearth of available, quality in-patient treatment facilities, and medical professionals who are poorly trained or administered medications inappropriate for a particular individual. Perhaps the most galling of all are restrictions framed by HIPAA laws, which were designed to guard patient privacy but in reality, excludes caregivers from direct information interchange with medical professionals despite their unique and experienced knowledge of the patient.
An individual living with mental illness usually has a long history of trial and error therapies. Contributor/parents to the Behind The Wall story collection have learned to adhere to a few critical and practical methods in dealing with the medical industrial complex. First, they constantly remind their over-eighteen child to sign the HIPAA waiver when they are in treatment and ask for one if it is not offered in order to allow medical professionals to communicate with a designated adult. Unfortunately, a person experiencing psychosis doesn’t always have practical matters, such as paperwork, top of mind. Second, parents advise, keep medical records of all treatments well-organized and close at hand. Many parents joke about binders filled with medical paperwork lining their shelves, overwhelming their offices. Because of the complex nature of diagnosing mental illness, it is crucial that each medical professional involved understands past treatments and outcomes. While a patient in crisis may present common symptoms, the go-to treatment may be potentially dangerous to some individuals.
One such patient, Miguel, who was diagnosed with schizophrenia, has never been able to tolerate a typical therapeutic dosage of most go-to medications. Once he gained fifty pounds in a week. Another time he lost his vision at a nearly full dose. One medication put him at risk for cardiac arrest. Luckily his mother maintains excellent records and researches medication so that when a doctor prescribed Clozaril, a heavy-duty drug known to be potentially legal to a small percentage of individuals, she was able to convince the doctor to find an alternative even though his symptoms were severe. Since Miguel experiences side effects to some degree with every medication, she knew a hard-core drug would be especially risky for Miguel.
Kerri’s son, Thomas, was living in a group home that was not her first choice but was decided upon by her insurance. There was no psychiatrist on premises. Instead, a prescribing nurse met once a week with residents to assess drug treatments. While living in the group home, Thomas complained about depression. The nurse prescribed Prozac, a medication that in the past had made Thomas highly agitated. Kerri doggedly tracked down the nurse at her off-site office and informed her of the negative reactions her son experienced when prescribed any SSRI medications and luckily, together, they were able to find an alternative.
In these cases, a parent was closely monitoring their child’s treatment and a doctor listened. One can only imagine what happens when there is not an advocate overseeing treatment. Or, in Marie’s case (from last week’s post, Just Another Friday Night in Lock Down) when a doctor ignores a parent’s pleas not to administer a benzodiazepine to her addict son.
Dan and Rebecca also closely monitor their daughter, Stella, who was diagnosed with schizophrenia and lives a few hours away from where she attends university. Stella called her parents saying she wasn’t feeling quite right, to which her parents urged her to visit the university health center. Later, Dan and Rebecca received a call from the medical center stating that Stella would be checked into a hospital. “If you don’t do it,” the nurse said, “the university will.” Dan rushed to retrieve his daughter and drove her to an emergency room at a well-respected hospital close to their home. They were ushered into a room with, as Dan describes it, “soft furniture,” where they waited over ten hours and still did not see a psychiatrist. Dan realized that sitting in the dismal waiting room was more damaging and stressful than not seeing a psychiatrist. It was also a Friday, and she wouldn’t have received treatment over the weekend. He took Stella home to rest for a long weekend and she was able to return to school and resume her life.
Dan followed a third bit of advice that other parents cite, which is to “trust your gut” because, as Dan explains, you know your child best. He advises parents to “strike a balance” between listening to medical professionals and using one’s own observation skills. After all, the doctor is exposed to a data set limited to a short observation window and medical records. They don’t know the person. Says Dan, “You might be told, ‘I think we’ve nailed it with this combination of meds,’ and you’re looking at your kid and she’s not there, it’s not her. You have to say, ‘No, I don’t think what I’m seeing is working.’”
There are many pieces that need to align before a person with mental illness can reach recovery, and having a trusted advocate is an invaluable one. The stigma around mental illness certainly impedes treatment; more troubling is that based on the experiences of our contributors, stigma seems to be perpetuated by the medical industrial complex itself.
HIPAA laws are a formidable barrier as well. That a medical professional cannot provide information to the parent/advocate is an obstacle to constructing full-circle treatment where all parties vested in the health of the patient are well-informed. Esme always made a point to contact Jennifer’s therapist to tell her what was really going on at home because she suspected her daughter didn’t always tell the truth in therapy. She would call and say, “I’m just feeding you information…” hoping to increase the efficacy of her daughter’s treatment, but never really sure what was transpiring.
After Kerri’s son was placed in a psychiatric hospital, it took two days for her to learn where he was, and when she arrived to visit him, the receptionist would not tell her and her husband where he was. It’s against the law, after all, until he signed the paperwork. A young man who was experiencing psychosis forgot to ask for the paperwork. Imagine.
*As promised in our very first post, the following story is provided by a guest blogger, edited by us. All names have been changed for privacy. Behind The Wall stands by the authenticity of this story.
Of the many parents we interviewed for our story collection, almost every parent interviewed had a similar story pertaining to ER care and treatment. This is one of many.
My son, Scott, who is in his mid-twenties, was experiencing his second acute, hypo-manic episode in seven months. He was terrified and highly agitated, believing he was going to die from lithium poisoning and insisted on having his blood tested. Right now. About a month before this night he had somehow been convinced by strangers, in person and on the internet, who he referred to as “cult members trying to kill people,” that drinking one’s urine and a gallon of distilled water each day was good for one’s health. While he decided on his own to lower some medications thinking his urine would boost his mental and physical health, he became convinced he had been lethally poisoned by the lithium re-circulating through in his body. He claimed the lithium overdose was causing headaches, and lightheadedness, though my husband and I had noticed he was forgetting to eat for long stretches and we were more alarmed by his news about drinking urine than the idea of lithium toxicity, but relieved he now admitted it had been a bad idea.
Scott and I arrived at a well-respected university hospital and were told to sit in the ER lock-down where emergency psychiatric patients are held. It amounts to two grubby, prison-like bedrooms and a small common area, which is a rather generous description. I was told to leave my purse and cell phone outside the room, which meant I couldn’t contact my husband, who was out of town, or family members taking care of our pets to let them know what was happening to us. Scott had been escorted from our driveway in an ambulance, a scene that lends itself to justified concern. Like prisoners, we were locked in the room. To use the restroom, we had to ask permission and someone unlocked the door to let us out. With nothing to read or watch, I couldn’t ignore the shabbiness of the place, the uncomfortable fiberglass chairs and the kicked-in scuffed walls; I kept wishing for a can of paint to have at least something constructive to do with the empty time before me.
I expected we’d have a wait before someone would appear and help my son. In the ER triage, though he believed he was going to die, I understood he was not a top priority.
An hour and thirty minutes passed with nary a nurse or doctor in sight. During this time Scott was quiet and we exchanged a few words. But as more time passed, he became agitated again and ranted that he was going to die from lithium toxicity. He was sure of it and also that no one would help him. I assured him he was not going to die and motioned through the glass window to the nurses and doctors. His agitation increased, he writhed, paced, and yelled, “I’m going to die.” His 6’2” body would not stay still because stillness, he said, would cause him to die. His eyes were wild and he was frightened. And there was nothing I could do for him.
A non- psychiatric resident finally appeared and asked me if my son had anxiety. Did he really ask me that? Could he see what was happening? He asked if Scott had ever been manic before and if he takes Ativan, an addictive benzodiazepine, used to treat anxiety.
“He’s an addict-alcoholic,” I said. “He can’t take anything in that category. Nothing. He cannot take that shit! He’s been sober for a year and we don’t need to stir up his brain now.”
I was very clear in reminding, or more likely teaching that intern that any benzodiazepine would be devastating to Scott, who is dually diagnosed with bipolar disorder and addictions. Benzodiazepines light up the addictive part of his brain, essentially accentuating the thirst an addict fights daily. A thirst that eventually quiets somewhat over time though never goes away, but comes back with a roaring vengeance with even a drop, like blood to a shark. That was the last thing he needed, especially coming so close— less than a week to be precise—to maintaining sobriety for a full year, a remarkable accomplishment for any addict.
The resident said Scott’s lithium levels would be checked, though did not offer a time frame, then offered a perfunctory nod and left. Scott resumed his crying, yelling, and pacing because he was ‘going to die.’ A nurse arrived to take his blood while I somehow held him still— all 165 pounds of him. When would we get the lab results? No one seemed to know.
I wondered how many hours I have spent in ERs and hospitals, not for my son’s mental illness, but for my own injuries or for either of my two sons. In fact, Scott’s brother was rushed to the ER on numerous occasions, more than I can count, from infancy through adulthood for a rare condition that requires emergency intervention whenever he contracts an illness in which he loses fluids (a flu, for example). There were three different broken bone incidences, torn ligaments and stitches. How kindly the nurses were, making sure my sons were not afraid, outlining procedures in advance, looking us in the eyes as they told us what would come next. Doctors took time to listen to the important parameters for treating my son whose rare condition requires added precautions. These past experiences were in stark contrast to how we were treated on this night, now a mentally ill patient and his exhausted mother.
By hour three, my son continued to occasionally rant and pace. I was trying to keep him still and tried logic… But logic with a hypo manic person, well, that’s another story…
An older woman, who announced herself as the attending physician, cracked the door of the lock-down. Her voice was angry and sharp. She said, “We’re going to give him Ativan and Haldol.” I repeated myself and told her Scott is an addict-alcoholic and can’t take the Ativan. She barked, “This has nothing to do with addictions! I’m the doctor. If he doesn’t get Ativan he will hurt himself.”
Before I knew it, four residents, a policeman, and a nurse were in the room to watch the crazy man pace and scream. One resident laughed. I felt humiliated and sad for my son, a young man who had once been an academic and athletic superstar, who had received a merit scholarship to college, and was now being laughed at by an uncompassionate intern who clearly knew nothing about mental illness.
Before I could refuse the Ativan, or even say anything to them, a resident gave him a shot of Haldol and Ativan. They were gone as soon as they left. My son was soon asleep. I was angry and deflated. Tears stung my eyes.
Four more hours elapsed during which no one spoke to or checked on us. During that time, a young couple, an exhausted woman and deeply depressed man, entered the small common area and sat in the stained chairs, never looking our way.
A nurse came into the lock-down with absolutely no explanation, to whisk us away to the “Behavior Health” area. Scott was drowsy and clearly incapable of fight or escape, and yet there was a police escort. The Behavior Health area was also locked down and my purse was taken away. My son and I went into a dark room and were told to keep the lights out. The air conditioner on this hot July was cranked to what felt like 60 degrees. As my son slept, I wiped crumbs off the chair, wrapped myself in a thin blanket and tried to get comfortable in the fiberglass chair.
We had checked in at 8:30pm and it was now 2:00am. I never thought we would wait so long to get some attention. I tried to rest, but all night I’d been in a state of anticipation, thinking that surely we would see a doctor soon and be able to check out. I had been told he would be seen “tonight” but tonight had passed. At 3:30am a resident came into the room just to apologize for keeping us waiting, telling me there were four people ahead of me and two were adolescents. “By law I have to see minors first.” And then he left.
I felt powerless and helpless. A nurse came by and asked me to close the door. “I can’t sit in total darkness,” I said, trying not to cry. The nurse suggested I wait in the main ER waiting area. I refused because I had seen too much coughing and blood there that night. More importantly I needed to be available to Scott, to advocate for him, though already that night I saw that the staff undervalued my experience and knowledge about his treatment history. I ignored the nurse and propped the door open to allow light in from the hallway. Surely, I kept telling myself, a doctor would soon be there and I didn’t want to be asleep when he evaluated my son.
Over the course of the next three hours, Scott awoke and told me his hypomania had dissipated and that he felt good and was ready to check out. I knew he was good to go home, he was calm and sounded like himself, even if groggy from the Haldol-induced sleep that allowed him to get the rest he desperately needed. The Haldol alone would have stopped the acute hypomania. I was relieved to see him calm, but underneath, I was furious the doctor had ordered an Ativan shot—potentially causing more damage for an addictive brain than had we never come to the ER.
Finally, at 6:00am, well over nine hours after we checked in, yet another resident appeared. But the resident was unable to conduct an evaluation because Scott could not be roused from his deep sleep. The resident went by my report though I’d had no sleep and hardly any food the day before, never a good combination for me even under the best of conditions. I had trouble remembering names of medications and what exactly brought us into the ER. I slurred words. All I could think of was that I was exhausted, cold, and I wanted out of that jail. Please, please let me out.
Scott was cleared to check out and we were told it would be another two hours before the paperwork was done. This is when I finally and successfully asserted myself. I demanded the paperwork be completed within the next hour. The resident listened and we were out within forty-five minutes. We walked out and into a sunny Saturday.
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