There are two things you never want to have happen to you. One of them is to suffer a mental illness. The other is to suffer a mental illness and try to get admitted to a hospital.
The problem is that the folks who work in emergency units don’t especially care for the mentally ill. Trained to deal with problems in the escalating order of their urgency, emergency unit staff perceive the mentally ill—with their long, rambling stories, their imprecise diagnoses, their ticks and twitches—as a nuisance to the smooth running of their necessary operations.
You see those signs in emergency waiting rooms that say you will be taken care of in the order of the severity of your illness? Those signs guarantee that if you have arrived at the emergency room with a mental illness, you will be the very last person to be looked after, unless you have a saw in hand and are threatening to take your head off.
In 2001, I accompanied my older brother to an emergency waiting room and tried to get him admitted to the psychiatric unit. Days later we were still there, the two of us, sitting in a hallway, cooling our heels, waiting.
But before I relate that story, I should back up a bit. I should contextualize things. I should provide my mental health credentials. I know a little something about craziness, because I’m a little bit crazed myself, and I’m pretty sure that the mental health system has made me that way.
My introduction to mental illness, my apprenticeship in craziness, occurred 30 years ago. In the fall of 1976 my youngest brother, Ben, first evidenced schizophrenia. He was 18. Like most people who encounter a mental illness for the first time, my family didn’t know what schizophrenia was. It seemed mysterious and otherwordly. We had no idea what the symptoms were, what the prognosis was, or how to access help. It took us four painful months to get my younger brother diagnosed, two more months to get him a bed in a hospital and the following year he was dead. Suicide. I’ve learned the hard way: schizophrenia generates a heat that burns in a lot of different ways.
My younger brother passed away before the Great Closing of the eighties. This was a time when government and associated mental health authorities concluded that larger psychiatric facilities were counterproductive. These larger institutions would be closed, so the theory went, so that smaller, more effective programs could be implemented to integrate mental patients into the community. The savings that would accrue from the closings would generate funds that would then finance workshops and clinics, and hire therapists and health care workers who would facilitate that necessary integration.
But then along came the unanticipated recession of the eighties. Budgets were eroded and all those plans for integration and facilitation melted and evaporated in the parching winds of the economic drought. The large psychiatric institutions closed all right, but the money that was supposed to follow the mentally ill into the communities never did. Instead, we entered the beginning of an epoch that I refer to as Laissez Faire Health Care. “Laissez faire” means let be or leave alone, and never has anyone invented a more appropriate term when it comes to how governments treat the mentally ill.
Take a look in our downtown core. See those folks on the street ambling about, talking to themselves, pushing shopping carts filled with bottles, stitching together shelters of plastic bags, lying down over top of grates in the pavement? That’s laissez faire health care. The appearance of these unfortunates on the streets, in the numbers you see today, coincides almost directly with the Great Closing.
One of the things that there is undeniably more of now, however, is the opportunity to wait. Waiting, it seems, is something you can find in abundance.
My older brother, Olivier, had the great misfortune to be diagnosed as schizophrenic in the middle of the eighties. He has been an outpatient with at least two psychiatric units that have since been shut down. One unit had only just been renovated. The hospital, brand new renovations and all, was abandoned. Another unit was spectacularly blown to kingdom come when Calgary’s General Hospital was dynamited. Many of the programs that were offered when Olivier was first diagnosed—group therapy, recreational therapy—have shrivelled and shrunk or disappeared, never to be seen again.
The medication my brother takes is potent stuff. It doesn’t fix his schizophrenia—nothing can do that, there is no cure—but it helps control the most disabling aspects: the hallucinations, scattered thoughts, paralyzing fears. But, as with many powerful drugs, there are often intense—and dangerous—side effects. One of these can be a sudden, critical diabetic spike. That occurred to my brother one evening. His blood sugars abruptly rose, he began sweating, his speech slowed, he stumbled and slurred. I rushed him to the hospital and he was taken in immediately. (This is of particular interest when one compares the swift response to his diabetic—i.e., strictly physical— condition with the response taken to his later, solely mental condition. Hold that thought.)
Because the drug had such a severe, deleterious side effect, my brother was forced to switch medication. Months later Olivier experienced a mental crisis as a result of that change. His psychiatrist, concerned for his safety, signed an admittance and directed him to go immediately to the hospital. Because there is a history of suicide in my family, I take this kind of thing seriously and I accompanied him. When we arrived at admitting we were told the unit was full at the moment, but if Olivier would just take a seat in emergency, they would find him a bed.
The next morning when I returned, I learned that he was still waiting in emergency. He had progressed as far as a dark, secluded side hallway in the emergency unit, where they had provided him with a solitary chair. He sat there most of the previous day and evening, alone.
I asked when a bed on the unit would be ready and was assured that it would be “soon.” When I returned from work in the afternoon they still hadn’t found a bed on the unit. I went looking for my brother and couldn’t find him. I discovered that though he had been signed into the care of the hospital, nobody on the emergency team knew his precise location. One distracted nurse felt certain he had left shortly ago. Another said he was sure Olivier had checked out some hours past and gone home. I went searching and at last found him wandering the hospital grounds outside. He had hallucinated throughout the night and most of the day. Disoriented and frightened by the isolation, beginning to believe that the hospital staff were organizing some kind of dark plot, he had made his way outside. No one had questioned him. No one tried to stop him.
I encouraged him to return to emergency, but asked a nurse if she thought it was wise to put someone who was paranoid and delusional off on his own in a hallway. She apologetically acknowledged to me that it probably wasn’t wise, but then admitted to me in the hushed tones of a co-conspirator that it was too bad, really, but since the cutbacks there just wasn’t good care to be found for psychiatric patients. “Kudos for candor,” I thought to myself at the time, but her confession was not really what you want to hear from a caregiver when you are placing a relative into their supervision.
Since my brother’s psychiatrist was now out of town and unavailable, I called a psychiatrist friend of mine to see if she had any information or influence that might assist Olivier. “No,” she replied regretfully. She admitted that she had heard that waiting times for psychiatric patients could be quite extensive —there was a bed shortage—but referred me to a person coordinating schizophrenic care at the regional health authority. When I contacted him and told him that it was day three and my brother was still perched, untreated, unsupervised, in a hallway, he was sympathetic but advised me that it was not unusual for psychiatric patients to wait five days, even in emergencies. Was there anything I could do to speed up the process? The prescription offered by this gentleman for my brother’s troubles was that I should pen a letter of concern to the premier of the province.
And so it went. No one was responsible, or everyone was responsible, and there was never anything to be done in any case. Eventually, at the end of three days my brother was admitted, but if the motto of the medical health profession is “First do no harm,” I would submit that leaving someone experiencing a mental health crisis in a hallway, unsupervised for days, holds potential for enormous harm. I would submit that individuals suffering with mental health issues currently receive second- class care in our health-care system. I would submit that there are not just cracks in the mental health system, but gaping chasms that people with mental health problems slip through on a regular basis.
Mental health care is like a fish hauled to dry land, struggling for survival, gasping for water. Every so often the government deigns to release water from the spigot sufficient to keep the fish alive—but not enough to diminish its suffering. The long queues for beds are one symptom of that struggle— after all, my brother had been directed by his doctor to go to the hospital, and Olivier was compliant about accepting treatment. Pity the family that brings in a delusional relative who is afraid or suspicious or non-compliant.
Or what of those who are mentally ill and have no family to provide support and follow-up? What if you find yourself ill and delusional, but your family has passed away, or lives elsewhere, or is too elderly to provide support, or is alienated from you as a result of your irrational, unpredictable behaviour? Where will you go when the beds are full, and there’s no one around to ensure that you receive a placement? Hello! Welcome to the splendid liberty of the homeless.
And for those who are on the street, without family to offer support, there is the additional risk of another kind of institutionalization. The unspoken, unacknowledged dirty little secret of mental health care is that while the watchword of the past few decades has been “deinstitutionalization,” another kind of institutionalization has surreptitiously taken its place, and that is the prison system. Examine this, a statement from the John Howard Society of Alberta’s NGO Justice Summit Newsletter, February 2002: “…among those that we incarcerate [today] are people with mental health issues… Although some people with a mental illness commit serious offences… a large proportion of police contacts with and arrests of this community are for minor offences such as trespassing, disorderly conduct or other non-serious offences…”
In other words, the mentally ill, on the streets and without treatment, are incarcerated for behaviours that are entirely predictable because of their illness, and which would be preventable were they to receive treatment.
But what of the programs that were supposed to be generated to accommodate the mentally ill, and ensure their smooth integration into the community? Many of these operate outside the support of tax dollars.
I spoke at a fundraiser for the Calgary Association for Self Help earlier this year. The association was struggling to raise money for an art therapy program they offered the mentally ill. This program is the very epitome of the small, community-based initiatives that were supposed to receive government support as the larger institutions were closed. The entire operating costs amounted to a few thousands to administer—a pittance by health-care standards—but it’s not entirely supported by tax dollars. Consequently, Self Help must perform silent auctions, organize benefit dinners, run casinos and generally do whatever it takes to generate funding. Sometimes they come up short. Two years ago they were forced to close the art therapy program because they couldn’t raise the necessary funds. This year they got lucky—the Calgary Health Region bailed them out. But what about next year, or the year after?
If all of this sounds unpleasant, it’s because it is. But if it were only unpleasant or uncomfortable or discouraging that would be one thing, but it’s much more than that. For the mentally ill, this assistance often represents the difference between life and death. Suicide exacts a terrible toll among the mentally ill. Without support, therapy and follow-up, the risk of suicide increases enormously. Nor is it only patients who find themselves at risk. Because support for the mentally ill has been increasingly downloaded onto families, who often don’t have the skills to handle a person who suffers from a severe disorder, tragic situations can arise. One of the fellows my older brother saw on and off again in group therapy was picked up by the police. His elderly parents were his primary caregivers, and during a psychotic episode which the parents were entirely ill-equipped to handle, this man beat his father to death.
For the record, here is one person’s perspective from inside the system. In the descending hierarchy of medical care practices funded by the government, mental health care falls very low indeed. Why? Mental illness is, in a sense, an invisible illness. A person can suffer from depression, or bipolar dis- order, or schizophrenia, and appear perfectly healthy, so it’s easy to ignore. In addition, the mentally ill receive inadequate service because they have no economic clout and no political influence. As a result, there are very few consequences that those in power must face if mental health-care needs aren’t met. On the rare occasion when mental-health issues are publicly addressed in political forums, they are often dismissed as mere lobbying by a special-interest group. (And the very worst kind of special-interest group too—one without any particular ability to sway voters.) Ralph Klein’s response to AISH critics during the previous election campaign was especially telling. He hinted that the critics were freeloaders. This is the kind of response the mentally ill have come to expect.
There has been much talk and worried discussion about discovering alternatives to the economic woes of the present health-care system, of finding a precious “Third Way” that will diminish the fiduciary responsibilities of the government to the care of its citizens. In a sense, an alternative has already been found for the mentally ill and has covertly existed for years. If you want to know what it looks like, just open your window. Look out on your streets. That shifting, drifting, nomadic population is living the alternative right now, every minute, every day. Welcome to the future.
Clem Martini is an award-winning playwright and associate professor at the University of Calgary.