American Madness & Belgian Hospitality
How public policy shapes the type of care we provide each other.
Hello,
It’s June 20th, and this is bipolar and bipartisan. I’ve been consumed with early summer travel and continuing to prioritize my own mental health journey, making it harder to find time to write. But, I’m excited to publish a few posts I’ve been working on in the coming weeks.
Today, I’m writing about two stories that caught my attention recently. The first was the cover story of The Atlantic’s May Issue: American Madness: My childhood best friend, a brutal killing, and the country’s failure to help the mentally ill. The second was New York Times coverage: A Radical Experiment in Mental Health Care, Tested Over Centuries.
When I read each, I was struck by the radically different approach to mental health care, and the types of outcomes each produces. I encourage you to give each a read, and below I’ll stitch together some themes.
Thanks for reading,
Tyler
How should we treat those with mental illness? What type of care is required and helpful, especially in times when individuals lose the ability to function in society?
There are scientific answers to these questions: medicine, sleep targets, recovery periods, therapy, and more. But there are also questions about patient rights, human experiences, physical space, and ensuring personal dignity; there is much less consensus on these topics, and approaches vary widely — especially when one adopts a global perspective.
These questions are the questions we need to be asking and answering, as a society. I have lost my mind: I’ve driven the wrong way, forgotten roommates’ names, developed paranoia, had sleepless nights, experienced the thrill of never ending ideas, and more. And, twice, I’ve been sucked into and spit out of a mental health system in America that has the patient experience wrong. I’ve suffered from the lack of personal space, the denial of patient rights, the inability to see family and friends, environments that don’t allow for good sleep or routine exercise, verbal and physical abuse by other patients, and the complete disregard for humane treatment.
So, what can we learn from two radically different models of treating patients? Let’s start in a Belgian town…
Belgian Hospitality
Geel, Belgium is a typical European town in many ways. 40,000 residents live in a village on a river founded in the 13th century that has seen its share of wars. There is a market square, agricultural and industrial economic activity, a zoo, a number of museums, and more.
Geel does one thing bolder than the rest of the world, though: for over 800 years they have rejected institutionalized mental health care as a silver bullet and fully embraced community based care as a solution. Inspiration for the way Geel treats mental health came from Saint Dymphna, the patron saint of mental illness, in whose memory the local church was built for following her flight to the city seeking refuge. Dymphna’s escape to Geel was short-lived, as she was killed by her father at age 15, when he lost his mind following the death of his wife and Dymphna’s mother.
So, how does Geel approach mental health care? Geel residents simply welcome the mentally ill into their homes. Locals call patients “boarders” and open up their doors for days, weeks, months, and years at a time — whatever may be required. People have historically traveled from all over Europe to be cared for in Geel, where they benefit from daily routines that ensure health outcomes, chores that preserve self-worth, and unconditional love that creates comfort.
At the program’s peak, some 2,000 boarders lived in 19th century Geel. Today, that number is down to 120, a function of fewer people traveling from across the continent to receive unique care; yet, 120 boarders living in the homes of every day residents of a 40,000 person city is still quite remarkable.
Importantly, this community based approach does not reject modern science. Instead, it complements it. There is a local psychiatric hospital with expert case workers who are on call 24/7, prescribe medications, and screen new boarding homes for patients. The characters in the New York Times profile speak to the benefits of such treatment.
A patient, Luc Hayen, who lives with a Geel resident who fosters three adults says: “I have a mighty life here… because I look to freedom, like every person pretty much.”
Hayen’s emphasis on the word freedom is important — because having the freedoms required to live a dignified life ought not be taken away from the mentally ill.
A provider, Liliane Peeters, who has fostered for 11 years, says “I wanted to take on that care; I have that somewhere in me. I actually wanted someone I could make a sandwich for.”
A leading local psychologist, Wilfried Bogartes, says: “Foster care is psychiatric care, which means that all the team members that you can find in a regular psychiatric hospital are involved in foster care.”
A scholar who wrote the forward to the book Geel Revisited, wrote: “Should they be treated as ill, possibly dangerous, confined in institutions? Or is there a chance that a more human and social approach, trying to reintegrate them into family and community life, a life of love and work, will succeed as well?”
American Madness
Juxtapose Geel’s story with the tragedy of Michael Laudor, and one can start to identify why America is experiencing an escalating mental health crisis with no signs of slowing down.
Michael was brilliant. An encyclopedia of knowledge, he was always reading in high school. He went to Yale for undergraduate studies, and returned for law school. He worked at a top consultancy, Bain & Company. The New York Times once called him a genius. But, Michael was diagnosed with schizophrenia, a disorder that would come to consume his life.
Following an episode of lost rationality, Michael was placed in New York City mental health ward. His childhood friend, Johnathen Rosen, gave him a call. Now, Rosen is telling the full story. In kicking off the tale of a locked ward, Rosen writes that there were “no phones in the rooms, just a payphone in the corridor.”
Sidenote: four decades later, many things haven’t changed. During a recent hospitalization, I shared one phone with 15 other patients. There was no privacy for inherently private conversations. There was limited access to the phone, because it had to be shared. During the most intense moments of one’s life, when they need to hear the love from their loved ones, most people in mental health wards pass on conversation altogether because of the way the phones work (or don’t).
On that initial call, Rosen asked his friend how he was doing in the “locked ward.” Michael responded “I’ve never been in prison before.” For centuries, and still today, American mental health patients have likened the experience of being in a mental health ward to that of being in jail. In America’s mental health hospitals, common rooms are filled with noise, and it’s hard to find a quiet space; doctors are spread too thin and inundated with paperwork, limiting the time they can spend with patients; individuals live with little stimulation or activities to keep their brains working; sleeping quarters are small, uncomfortable, and lack any sense of individuality.
Sidenote: A few of my fellow patients earlier this year at a mental health ward in Colorado — who have spent time in both institutions — say being in jail is better. One patient, upon a few of us leaving the ward, said “I’m going to miss the camaraderie. It’s kinda like being in jail.”
Michael ended up spending eight months in the mental health hospital, an institution to which he did want to return. He bounced around an assortment of outpatient care facilities, none of which provided him what he needed. He never found a cocktail of medications that seemed to cure his ailment (15 percent of people with schizophrenia may be treatment resistant, meaning medications do not treat their ailment). His madness continued with routine periods of psychosis, and it was never treated — not because America lacked a mental health system but because America lacked the right mental health system.
Rosen reports that during a period of increased delusions Michael’s mom said “We can’t do anything” because “They [Michael’s Family] doubted the efficacy of the system but feared its capacity for destruction, and they desperately wanted to save him from it.” The family now lives with an incurable pain, in part attributable to our country’s failed approach, and forever regret believing they did not move fast enough when Michael began experiencing intense symptoms again.
Michael murdered his long-time girlfriend, Carrie, who in a bout of hallucinations, he thought was a doll. He had stabbed her, and cut her throat. All the more tragic because she was pregnant with what would have been their first child together.
Michael, who was a hero to the mental illness community at the time, given his bravery in telling his story (which was set to become both a movie and a book), was overnight an example used by elected leaders as a reason why those with mental illness needed to be locked up. Michael’s story, and similar ones of violence, led to the blurring of how our country thinks about health and crime. As Rosen opines:
“Violence and mental illness have been legally entangled ever since dangerousness, rather than illness, became the de facto prerequisite for hospitalization. If a hospital could produce a bed, or mandate treatment, only for someone actively threatening harm, you could hardly blame the general population for mixing up the very sick and the very violent, or mental hospitals and prisons. Today the Twin Towers Correctional Facility, in Los Angeles, is described—by the L.A. County Sheriff’s Department—as ‘the nation’s largest mental health facility.’”
Following Carrie’s tragic death, Michael has lived with 280 peers in a psychiatric facility surrounded by a 16-foot-high fence for the better part of the last 25 years. A brilliant man has been locked up, again, and our society will never benefit from his full potential. A murderer has also been locked up, and yet it’s hard to not believe that society is the guilty party.
Public Policy Matters
How is it that American mental health care is so broken that many patients don’t want care because they don’t have faith in how it will be provided? The short answer is a well-intentioned reform effort gone wrong and a presidential promise only half fulfilled.
In the middle of the 20th century, many community activists became mental health reformers. They were intensely critical of state-ran institutions that were failing patients. People literally were chained and shackled. Lobotomy — surgery that put metals in patients’ frontal lobes — was common. Patients often lived for years in institutions that had no plan for them to return to their communities.
The result of tireless advocacy led to the Community Mental Health Act of 1963, a bipartisan piece of federal legislation championed by then President Kennedy. The overarching strategy was to shift mental health care from state-run institutions that were isolating patients from society in long hospital stays to a short-term care model that prioritized community based care when patients left hospitals. There was a promise of community based centers that would provide more humane and personalized care that did not require patients to be hospitalized 24/7.
Americans 60 years ago were trying to shift to a model of mental health care that looked more like what Geel, Belgium offers. President Kennedy put it this way in a special message to Congress on mental health care:
“I am proposing a new approach to mental illness and to mental retardation. This approach is designed, in large measure, to use Federal resources to stimulate State, local and private action. When carried out, reliance on the cold mercy of custodial isolation will be supplanted by the open warmth of community concern and capability. Emphasis on prevention, treatment and rehabilitation will be substituted for a desultory interest in confining patients in an institution to wither away.”
The big problem? We did part one, and not part two. That is, we defunded state institutions and liberated patients from a lifetime of isolation from society but never actually invested in community-based care at the same levels we were once investing in state institutions. The community centers Kennedy promised never came to be at scale, often suffering from the lack of funding.
We’re now left with the worst possible scenario. There are fewer beds available to mental health patients than there were a half century ago, despite more patients who need care. There is less funding for mental health providers, despite a shortage of workers. While we’ve done away with 72 day stays, most mental health facilities are trying to get patients out within 72 hours — much too short of a time to provide adequate care. Most importantly, governments — now counties, no longer states — never really changed their models for the type of physical space patients occupy.
It is in this context that major public policy debates about mental health are happening today. One key choice that elected leaders — including New York City’s mayor and California’s Governor — are facing is whether to exercise government authority to increase involuntary hospitalizations. In short, policy makers are increasingly taking the view that those who cannot help themselves, especially homeless people experiencing acute mental health challenges, should be more regularly involuntarily admitted to mental health facilities.
The arguments can be persuasive: untreated mental health poses a societal public safety risk; mental health care costs are soaring for governments, especially emergency rooms bills; and the government has an interest in protecting those who can’t meet their own needs.
Yet, I find myself quite conflicted. A few months of research has taught me that the United States only half fulfilled Kennedy’s promise — defunding state institutions, but not building anything to replace them. And I’ve personally experienced our current in-patient offerings twice, neither time convinced the model we have today is the right one.
If Americans — including the most vulnerable living homelessly in our major cities — are rejecting voluntary admission to institutions that many know have failed in the past, is the right answer to involuntarily admit more people to an already overworked system? I’m not so convinced.
Bipolar Roundup
A fact about bipolar, a wellness tip, and a recommended read.
A Fact: people with bipolar disorder can experience both depressive symptoms and manic activity at the same time, a period called a “mixed state”
A Wellness Tip: keeping a journal, including to write about your emotions, track symptoms, prioritize, and express gratitude is often cited as a common cure.
A Recommended Read: Are you a Vegas aficionado? Are your eyes glued to the Olympics every two years? Interested in how a bipolar life can take a toll on loved ones? I highly recommend Fast Girl: A Life Spent Running from Madness. Author Suzy Favor Hamilton chronicles her complicated relationship with running as she moves from midwest roots to the pinnacle of her sport in Barcelona, Atlanta, and Sydney. Throughout, she battles an undiagnosed disorder that eventually fully consumes her in an alternative life she creates for herself in Las Vegas. The memoir is equal parts inspiring, shocking, sad, and full of love.