Bedlam by Kenneth Paul Rosenberg, MD
An Intimate Journey Into America's Mental Health Crisis
Title: Bedlam: An Intimate Journey Into America’s Mental Health Crisis
Author: Kenneth Paul Rosenberg, MD
Publisher: Avery
Publication Year: 2019
ISBN: 9780525541318
Rating: 3.5 stars
As we get to the end of Mental Health Awareness month, I thought this was the perfect title to pull off my TBR to learn a little more about mental health and its treatment in America.
For Dr. Rosenberg, this topic is personal. At the beginning of the book, he recounts the story of growing up with his sister Merle, who was diagnosed with schizophrenia as a young adult. Seeing what Merle and their family experienced throughout Merle’s illness inspired him to go into the mental health field and to write this book looking at how mental health is treated in the United States.
According to the book, one in five Americans lives with a mental illness and many of them are living with an SMI (severe mental illness). The book and Rosenberg’s work focus mainly on those with SMIs. This of course not only impacts the individuals, but also their families, and their communities. Because mental health care can be hard to find and expensive to pay for, many people with SMIs self medicate with alcohol or drugs not prescribed to them by a doctor, which results in higher rates of Substance Use Disorder (SUD) and for people who experience psychosis, these substances can make the psychosis worse. To further complicate things, as we saw in Everything Here is Beautiful, the medicines prescribed to treat many SMIs have difficult side effects like weight gain, which can cause patients to stop taking the medicine when they are feeling better, or if the patient remains on their medicine regimen can lead to obesity and related health complications like heart disease. Rosenberg also points out that for many patients with SMI each experience of psychosis damages gray matter in their brains and makes it harder for them to recover. These incidents of psychosis can also lead to job loss and homelessness, which makes it harder to get mental health care due to lack of insurance and disposable income.
Rosenberg looks at the history of mental healthcare in the US. From overcrowded institutions with potentially deadly treatments (like putting patients in insulin comas to “reset” their brains) through the movement for deinstitutionalization that fell through on promises for smaller community-based care centers. At the time of writing, Rosenberg states that the three biggest mental health institutions were the Los Angeles County Jail, the Cook County Jail, and Rikers Island (also a jail). With limits on the number of hospital beds that can be used for patients with mental illness and many mental health treatment facilities being privately-owned and extremely expensive, many people with SMIs are locked away in prisons to await treatment opportunities and often locked in solitary confinement, which can worsen their illness or lead to suicide. An additional side effect of this is that police, who are untrained for these situations, are often the only first responders called to a mental health crisis situation. According to the book, there were 992 people shot and killed by police in 2018 and 21% of them had a mental illness. Rosenberg posits that not having appropriate medical care available for those with SMI leads to a higher toll on police and has worse outcomes for the individuals themselves as well as costing a lot in terms of the money needed to incarcerate people with SMIs (people with SMIs tend to cost much more to incarcerate than people without SMIs).
Rosenberg highlights just how far mental health treatment hasn’t come, especially in America. He explains how funding for research on SMIs is much smaller than research funding for other illnesses and how as a result, the medicines on the market at the time of writing are just slightly different forms of the first antipsychotics that came out in the mid-twentieth century. He says that these medicines treat the symptoms of SMI and psychosis, but none of them actually work to cure the SMI (there is currently no cure, and we aren’t moving any closer to one). America is apparently one of the only developed countries to continue to use restraints when patients arrive at the ER or hospital suffering from an SMI episode, which is dehumanizing and in the eyes of many doctors and patients alike, inhumane.
The book isn’t all doom and gloom and sad statistics though. In following several individuals with SMIs throughout his research, Rosenberg did find some with happy outcomes. In fact Patrisse Cullors, one of the founders of the Black Lives Matter movement is also an activist on mental health issues because her brother, Monte, lives with an SMI. After some bad interactions with the police during one of her brother’s episodes, Cullors and her family formed a support network so that they could handle things without police involvement, potentially saving her brother’s life. Rosenberg also talks about Mental Health Courts (MHCs), similar to drug courts, where a judge can mandate people to go into treatment and medical care instead of jails or prisons. He additionally mentions assertive community treatment (ACT) and assisted outpatient treatment (AOT) both methods of helping to treat people battling SMIs while keeping them in their homes and communities. Communities that use the MHC, ACT, and AOT programs are all seeing a sizable reduction in police shootings, rates of incarceration, and public dollars spent on treating and rehabilitating people with SMIs.
Last year, I read Robert Kolker’s Hidden Valley Road, a book about the Galvin family, who had six of their twelve children diagnosed with schizophrenia. Through reading that book, I learned a lot about schizophrenia and how it is handled within the US medical system. I got a more emotional look at how SMIs impact individuals and families earlier this month when I read Everything Here is Beautiful. This book built on both of those to give me a more up-to-date look at the mental health crisis and how it is treated in this country. Because this book was written and published pre-COVID, it doesn’t even touch on how COVID and the resulting isolation impacted the mental health care system and people with SMIs. Unfortunately, I feel like isolation, hospital overcrowding, and the rapid transmission of COVID within prisons only made the mental health crisis worse, but I don’t have official statistics on that. It also was written before 988 was established as the mental health helpline, which hopefully has resulted in some positive changes to how mental health episodes are handled, though again, I don’t have any conclusive evidence.
This book definitely wasn’t an easy read. Out of all of the people with SMIs that Rosenberg follows, even the ones with relatively good outcomes had hard stories. Their stories are stories of struggle, homelessness, addiction, incarceration, and trying to get help in a medical system that is out for money rather than healing (I am referring to the hospitals and insurance companies, not the doctors—many of the doctors Rosenberg talked to went into the field because they have a loved one with an SMI and actually care and want to make a difference). I learned a lot from this book that I hadn’t previously known, like how deeply the penal system is enmeshed in mental health care and how little we still know and are advancing in terms of SMIs.
I also think Rosenberg’s personal and professional backgrounds bring value to this project. He is knowledgeable about the medical and familial sides of SMIs and is able to write with compassion and understanding for doctors, patients, and families, which translates to the reader in ways that a book written by a journalist or a doctor without personal experience may not have been able to accomplish. However, Rosenberg still works to maintain a professional distance that presents a more objective story, but that I found frustrating. In terms of some of the more controversial aspects discussed in the book like restraining patients or MHCs that some argue can coerce people to get treatment against their will, Rosenberg states what different people believe on the topic without sharing or making clear his personal beliefs. That can be a powerful skill for a journalist, non-fiction writer, or documentarian (I’ll come back to that), but since he had experience as a doctor and a family member, I really wanted to know what his opinions are. I think the issues are complex and full of gray areas (for example: if someone I loved was having a mental health crisis, I wouldn’t want them to be restrained to a hospital bed, but if I were a doctor at a psychiatric ER and an agitated patient experiencing psychosis wanted to take a swing at me, I would likely feel differently), but I would like to see how someone who has had experience in multiple roles might think about the issue. His stark objectivity was somewhat frustrating to me and I would have liked to get more of his perspective.
The book ends with some really helpful resources such as practical advice and helpful tips for people with SMIs and their families. It has examples of some of the medical forms talked about in the book and also lists action items for people who don’t have or know someone with an SMI, but still want to be involved in meaningful mental health reform. I love this because it makes it easy for the reader to take what they have learned in this book with them after they are done reading and hopefully will get more people involved in ameliorating the mental health crisis in the US.
If this all sounds interesting, but you don’t want to read the book, you are in luck. In addition to being an MD, Rosenberg is also a filmmaker and has made a documentary also titled Bedlam that covers the same topics discussed in the book. I haven’t seen it yet, but I’m hoping to be able to watch it soon.