Patients With Schizophrenia Face Discrimination From Clinicians, Says Sibling of Brothers With the Condition

In part 4 of this 6-part video series, Lindsay Galvin Rauch describes the challenges her brothers with schizophrenia experienced when admitted to the emergency room and the advocacy required on her part as their sibling and caretaker.

“From the very first impression, they're already assuming that they're going to have to release this person back out onto the streets. They've had to cut off their compassion and their empathy for this person to a large degree,” says Galvin Rauch.

Throughout the series, Psych Congress steering committee member and CEO of Orbit Health Telepsychiatry, Encino, California, Edward Kaftarian, MD, interviews Galvin Rauch about her journey from victim, to advocate, to champion as one of 12 siblings, 6 of whom were diagnosed with schizophrenia.

Galvin Rauch and author Robert Kolker were one of this year's featured sessions at Psych Congress in San Antonio, Texas. Their session "Hidden Valley Road: A Story of Family, Trauma, and Hope" walked attendees through the writing of the critically acclaimed novel “Hidden Valley Road: Inside the Mind of an American Family” that centered around Galvin Rauch's family and their contribution to critical scientific discoveries in schizophrenia. 

Catch up on the series:

Part 1: Family Impacts Awareness and Research of Schizophrenia While Living With the Condition at Home

Part 2: Sibling of Brothers With Schizophrenia Finds Hope Through Therapy and Connectedness

Part 3: Genetic Research Offers Hope to Family With 6 Siblings Diagnosed With Schizophrenia

Read the transcript:

Dr Edward Kaftarian: You are an expert, because you've been through it. You understand it as much as anyone can understand the impact and the effect that this mental illness can have. You've had to deal with it your whole life.

There's hope that with a greater understanding, people can see that the victim shouldn't be blamed. In fact, we need to help victims of...I hate using the word victim.

Lindsay Galvin Rauch:  It's an accurate term.

Dr Kaftarian: You are an expert, because you've been through it. You understand it as much as anyone can understand the impact and the effect that this mental illness can have. You've had to deal with it your whole life.

There's hope that with a greater understanding, people can see that the victim shouldn't be blamed. In fact, we need to help victims of...I hate using the word victim.

Galvin Rauch:  It's an accurate term.

Dr Kaftarian:  People who have suffered, and suffer from schizophrenia or a family member, such as you, who have to deal with the ordeal. Do you think we're moving in the right direction?

With a greater sensitivity toward equity, and toward underserved, and marginalized classes in society now, there's getting more attention to people who have been wronged and who are discriminated against. Are you saying that we've forgotten about schizophrenia, and those suffering from psychotic disorders, and we need to start to focus on them too?

Galvin Rauch:  Yeah. If you want to motivate people financially, which seems that we live in a capitalistic society, that seems to be at the root of a lot of peoples' motivations. Having them live on our city streets is costing us more money through emergency room care, and if we just provided them with their basic needs.

The amount we have to spend on our own health insurance to cover those emergency room visits that those who suffer with psychosis are using to get the care they need, we could take those funds and provide just a roof over their heads and a warm meal.

Dr Kaftarian:  It sounds like you've not had the best experience in emergency rooms in America.

Galvin Rauch:  No. [laughs]

Dr Kaftarian:  Do you want to tell us about that if it's not too difficult for you?

Galvin Rauch:  Not at all. A good example, I spoke to, last night, my brother, Matthew, and the fight between the...He had his first psychiatric break since he was 22. He's 62. He lived independently for all those years.

He had his first psychiatric break because a new psychiatrist took his case over at the local mental health center, and switched his medicine he had been on since he was 42, he's now 62, and switched to Clozaril, and he had woken up. He was one of those magical cases. The way he described it was, it was like waking up from a nightmare. The voices finally stopped.

Dr Kaftarian:  He described it like that?

Galvin Rauch:  Mm-hmm.

Dr Kaftarian:  That's a lot of insight.

Galvin Rauch:  He described it that way.

Dr Kaftarian:  For someone suffering from that condition, that's a lot of insight.

Galvin Rauch:  To watch that progress he had made from the time he started taking Clozaril, to then ending up with a new psychiatrist, who changed his medicine to an injectable. The very fast decline was really heartbreaking to watch. It was so obvious to me, and he ended up in the ER.

He's a rough-looking person. He looks like he lives on the streets, even though he had his own apartment and his own car. He looks like a meth addict, even though he's not. Those folks, when they come into emergency rooms, get dismissed. Often, the ER staff has very little compassion for them.

They don't have an answer. They don't have a bed. They don't have any place to send this person that's coming into their ER. From the very first impression, they're already assuming that they're going to have to release this person back out onto the streets. They've had to cut off their compassion and their empathy for this person to a large degree.

They're often coming in for a medical condition, which in my brother's case, this last time was. He was falling, and fainting, and kept passing out. He'd get up to go to the bathroom and hit the deck. He took himself, and the ER doc was just going to send him home.

They called me to let me know that he was being sent home. I live a long way. I demanded that he not be. I had 2 other brothers have that happen to them. They died. They were sent home after having taken themselves to the ER. Both died from complications from toxicity of their medications.

Dr Kaftarian:  The neuroleptic malignant syndrome, wow. Your advocacy resulted in Matthew being able to get the care that he needed.

Galvin Rauch:  Correct. He was admitted that night. My demanding that he have a full cardiac workup resulted in him having heart surgery the next day, and having a stent put in. Which is a very simple procedure. It's not a big deal. He could have gone home within a few days.

This is the other catch. Here's the other catch with the whole messed up system we have. He spent four months in the cardiac unit at the hospital, because he couldn't go back to his apartment. His level of psychiatric need was still so high. None of the psychiatric hospitals in town would take him back because he was "stable."

Even though he really probably needed to spend a few months in a psychiatric hospital to get back on his Clozaril, and get back to his baseline. He's never gotten back to his baseline since then. It's been 2, 3 years now.

I had to go to the press in Colorado Springs, to "The Gazette," the local newspaper, and have an article written about how there's no nursing homes in his hometown that will take him.

Dr Kaftarian:  Wow.

Galvin Rauch:  The town he grew up in.

Dr. Kaftarian:  This is a glimpse into the unique challenges that people have. Not only people suffering from the disorder, but also the families. It's not enough that you had to be heroic in the sense that you were showing grit, courage, and hope.

That wasn't even enough. You had to use your creative mind to figure out how to navigate a system. You had to also be smart, which you are, clearly. Essentially, you had to check a lot of categories in order for your sibling to get the care that he needed, that he deserved.

He was caught in a unique position, where he had a significant medical condition, and a significant psychiatric condition.

The medical providers, oftentimes, in that situation, want nothing to do with people that have mental health challenges. Mental health people often want nothing to do with people who have severe medical conditions. These patients are stuck in the middle.

Lindsay Mary Galvin Rauch, is the youngest of twelve siblings, six of whom were diagnosed with schizophrenia—becoming one of the first families to be studied by the National Institute of Mental Health and the subject matter of Oprah's Book Club Selection, “Hidden Valley Road - Inside the Mind of an American Family” by Robert Kolker. Her journey inspired her to evolve from victim, to survivor, to advocate. She is also an accomplished co-owner of a meeting and event company for nearly 30 years, where she partners with industry-leading organizations, hospitals, doctors, and other keynote experts to produce impactful functions designed to engage and educate the public.

Edward Kaftarian, MD is a nationally recognized psychiatrist and leader in the field of telepsychiatry and healthcare technology. Trained at the Johns Hopkins Hospital, he is board-certified in Psychiatry, Forensic Psychiatry and Addiction Medicine. Dr Kaftarian has served in a variety of executive roles within the California prison system, including chief psychiatrist, senior psychiatrist, medical director, and director of pharmacy. He is the founder of California’s Statewide Prison Telepsychiatry Program, which is the largest correctional telepsychiatry program in the world. Dr Kaftarian is currently the Chairman and CEO of Orbit Health Telepsychiatry, a company that provides telepsychiatry services to jails and prisons.