Inside Bedlam: a Q&A With Filmmaker Dr Ken Rosenberg

At a time when the healthcare system as a whole is in crisis—in the United States and around the world—Bedlam offers a critical perspective on the difficulty of providing care in a system stretched thin.

On Monday, April 13, PBS’s Independent Lens will air Bedlam, a documentary produced, directed, and written by Kenneth Paul Rosenberg, MD. The film masterfully weaves together the stories of patients and providers struggling in America’s strained mental health care system. Though much of the film takes place in Los Angeles, a city Dr Rosenberg considers the “canary in the coal mine,” Bedlam also follows mental health challenges in Dr Rosenberg’s family in Philadelphia.

At a time when the healthcare system as a whole is in crisis—in the United States and around the world—Bedlam offers a critical perspective on the difficulty of providing psychiatric care in a system stretched thin. The film tracks the rise of the prison system as a major site of care in the aftermath of deinstitutionalization and a failed, underfunded transition to community-based mental health centers.

The film’s tagline — “An Intimate Journey Into America’s Mental Health Crisis” — captures what Bedlam accomplishes so well. By closely following the stories of its subjects over the course of 5 years, the documentary gives a unique glimpse into the heartbreaking trajectories of patients who oscillate between the medical system and the prison system and between states of wellbeing and crisis. Dr Rosenberg allows the subjects to speak for themselves, and in doing so, offers an immensely humanizing portrait of a population that is often ignored and discriminated against.

Even for viewers with a wealth of psychiatric knowledge, Bedlam is worth watching. Dr Rosenberg contributes his valuable perspective as a practicing psychiatrist and demonstrates how storytelling lays at the foundation of both medicine and documentary filmmaking.

To learn more about the film, we sat in on a screening at Columbia University’s psychiatry grand rounds and spoke with Dr Rosenberg, an addiction psychiatrist with Upper East Health, author, and award-winning filmmaker.

Bedlam will air on Monday, April 13, 2020 at 10 pm EST on PBS’s Independent Lens.

How do you bring together your roles as a psychiatrist and filmmaker? How did you first get involved in documentary filmmaking as a psychiatrist?

I went to medical school to become a psychiatrist. The first 2 years are less clinical and more studying, some of which has nothing to do with psychiatry. So, I decided the first summer I had a break I would not do what I usually did, which is some kind of psychiatric research, and instead I would take a course [in filmmaking].

Filmmaking is much closer to psychiatry than one would think. You’re trying to tell a story, to get at the heart of the matter, and to use truth for a bigger cause to make a point.

My medical school, and then my fellowship and residency at Cornell, were extremely supportive of what I did. They raised money for me to make films and hold conferences, and before long, I was making films that were reviewed in the New England Journal of Medicine. It became clear that this was a way to further my psychiatric training; I found myself teaching other medical students about delirium and Alzheimer’s disease, and I made a film about why people become psychiatrists.

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Incorporating filmmaking into my education was much more congruent with who I was than studying parasitology or doing an autopsy or dissecting a cadaver. I was very grateful for the opportunity and it became synergistic [to my career].

Psychiatry and film are different worlds in some ways, and you’ve shown films in many settings, including Sundance and other festivals. How has the reception been?

The reception in the psychiatric community has been really gratifying, especially when we showed the film to the American Psychiatric Association and grand rounds at Columbia.

The entire board of the National Alliance on Mental Illness (NAMI) has come to support us, as well as the Treatment Advocacy Center — we have lots of support around the country. I was worried about [reception in the field of] psychiatry because I’m really critical of psychiatry [in the film]. I’m saying the drugs are not as good as they should be—they haven’t improved that much in 70 years—and that we, as a profession, have abandoned these people. The message I’m getting from psychiatry is: yes, that is correct.

There is a growing crisis of mental illness in this country and globally, with depression and anxiety being major challenges. Why focus particularly on “serious mental illness”?

I think you can focus on everything, but if you cast too wide a net, you don’t hit anything too well. Serious mental illness affects 4% of the population, causes incredible misery for families, and hasn’t been addressed. In psychiatry, we have addressed anxiety and depression well, but we haven’t addressed schizophrenia and serious bipolar disorder equally well. It’s clearly an area where we need attention. The jails are now the de facto asylums, where we put people with serious mental illness.

We don’t treat the sickest patients, and I think that’s a mistake. We don’t give them the attention they need. I don’t think that that’s true anywhere else in medicine, right? In cardiology, you don’t see people who have the most serious cardiac illnesses getting ignored. You don’t see Stage 4 cancer getting ignored. But in psychiatry, for many reasons, financial and poor prognosis, among others, these severe forms of illness are not given attention in terms of research. In the past 15 years research into schizophrenia drugs has decreased; drug trials are down by 90%.

The gold standard for bipolar disorder is a drug developed in 1949. Thank God we have lithium. But you know, if you have cancer there is a protocol that’s 2 or 3 years old. That’s not true for serious mental illness.

How do you see mental health care evolving given the dysfunction of our current system, particularly in the absence of any scientific breakthroughs?

Well, first of all I think we do need scientific breakthroughs. We search for NIMH funding to go into serious mental illness. The last time I checked, it was $452 million, whereas for cancer it’s $5 billion. When the World Health Organization looks at the cost burden, the social and financial costs of mental illness are greater than cancer, cardiovascular disease and all noncommunicable diseases combined.

We certainly can dedicate the time, money and effort that is dedicated to cancer to mental illness. We could also dedicate the advocacy. When’s the last time you heard about a Central Park marathon for serious mental illness? We don’t really have a war on serious mental illness the way we had a war on cancer in the 1990s.

The point of the film is to encourage more research, but it’s also to encourage the public to get behind this issue. Changes will not come because we have good presidents, or governors or mayors; it’s going to change because the public is as determined to fix serious mental illness as they are to fix cancer and cardiovascular disease. There needs to be a real shift in our society about that.

If we didn’t have a single new drug, a single new psychotherapy, we would still be far ahead if people got the treatment that we have. That’s not an original idea; that’s really the focus now of SAMHSA and NIMH — the focus on early intervention. The feeling in the research community is that we don’t have much to offer in terms of a new breakthrough for people with serious mental illness, but we can offer earlier treatment.

Patrick Kennedy, a friend and colleague who is in the film, is fond of saying that we need to treat serious mental illness the way we treat cancer. You don’t start treating in Stage 4, you treat in stage 0 or stage 1 and develop protocols. If we treat people earlier — and I know that to your readership I’m preaching to the choir — we’ll be so much further along.

Again, I take that back to advocacy, which is the whole point of my project, to build momentum in this country. We’re trying to start a movement for people and families who live with serious mental illness every day and do so in silence and shame and suffer immeasurably.

A particularly touching story in the documentary is that of Dr McGee, who struggles with the stress of practicing in a psychiatric ER. What is your advice to young trainees and others building a career in psychiatry working within a challenging system?

The great filmmaker Lina Wertmüller once said: everything is political. I think psychiatry is political. I think that if you are just a cog in the wheel and you’re just looking at crisis after crisis and feeling you can’t make a difference, that’s not enough for a very meaningful career. I think that you have to get involved in changing the system, and I think that gives you some agency. Dr McGee is now working directly on the streets with people who have serious mental illness in Los Angeles. I think that’s what you need. For people who are more sensitive and at risk for burning out, I think they need to be part of the conversation of change.

Toward the end of the film, Dr McGee walks out of the hospital on July 4th and she says, “This doesn’t make for a very good American story”. In many ways the story you tell is an American story—a story of closing the asylums and shifting to community care, of growing the criminal justice system, of a lack of housing and employment for people with mental illness.

What do you think are the specific challenges in the American context? Do you think there are other places where the issue of serious mental illness has been handled better?

We can learn a lot from other countries. Deinstitutionalization is something that happened worldwide, but there is a town that we can learn a lot from: a small town in northern Italy called Trieste. Trieste is a World Health Organization exemplar of community mental health.

Community mental health failed in part because of lack of funding, but also because it was not set up to deal with the sickest people, but to prevent new cases. In Trieste, as a small town of 220,000 people, they have community mental health available 24/7, and they have a few psychiatric beds in a locked ward. They tell me they rarely use them if at all.

I think that’s a good model. We can do compassionate community mental health that addresses people’s needs. However, there are things that Trieste has that we do not. They have universal health care. That makes a big difference. They are very big on preventive care, and everyone’s invested in the system—insurance is not a barrier. I think it’s hard to disagree that [universal healthcare] is probably a good idea for people who are seriously ill and living on the streets and in jails.

Moreover, Trieste doesn’t have a substance abuse epidemic. Up to 80% of the people living on the street, and some large percentage of people in jail, [in the United States] are actively using and addicted to substances. As an addiction psychiatrist, I’m always cognizant of substance abuse; co-occurring disorders are more the rule than the exception when you talk about people with serious mental illness.