What’s happening in the world of antipsychotics might keep you awake at night.

WHY DOES IT SEEM LIKE everyone has an antipsychotic story they want to tell me?

For Victoria resident Roedy Green, his troubles hit a peak when he found he couldn’t haul himself out of a bathtub. He felt things had already begun going seriously sideways after a series of falls, then the 71-year-old computer programmer found that he was constantly sleeping—sometimes for up to 20 hours a day—which made Roedy feel like he was losing his grip on life. In addition to starting to feel demented, the final straw was the loss of muscle strength while trying to exit the bathtub. He and his housemate Geneva Hagen began to search for answers.

This Victoria pair discovered that in addition to many other pills he was taking to manage his HIV, diabetes and bipolar disorder, Roedy was being prescribed an antipsychotic—supposedly to help him sleep. Ironically, insomnia was one problem that he had never had, and what he needed was to stay more alert.

The drug quetiapine (also sold under the brand name Seroquel) is widely used to promote sleep, though that is not an approved use. It is formally approved by Health Canada to treat major depressive disorder, schizophrenia, and episodes of mania associated with bipolar disorder, but is often used in low doses for insomnia.

When the doctor asked, “So how are you doing on the Seroquel?” Roedy and Geneva were shocked. They hadn’t realized that a previous visit had resulted in a prescription for this antipsychotic. Apparently doctors at the geriatric clinic had misunderstood his complaint.

“With Seroquel he was just a zombie,” Geneva told me. “He was sleeping 18-20 hours a day. He couldn’t get anything done. It was like having a potted plant.”

THE INDISCRIMINATE USE OF ANTIPSYCHOTICS is likely one of the biggest pharmaceutical scandals of our time, centred around one of the most expensive and inappropriately used drug classes in modern society.

The problems of antipsychotics being used to treat sleep problems have been on the radar of the medical establishment for many years. Even though antipsychotics like quetiapine are not approved to treat insomnia, they are often prescribed for that purpose.

Some have blamed the growing use of antipsychotics on the recognition that other pills used for sleeping and anxiety—the benzodiazepines—are addictive and, over time, ineffective, but that is only part of the explanation.

What often comes up is the issue of “management” in long-term care. People with dementia can often become agitated and aggressive, and therefore antipsychotics seem helpful, especially in dealing with someone who can be physically abusive to staff or other residents. In low doses, antipsychotics can be very sedating. Plus they come with a whole host of adverse effects, including a kind of unpleasant agitated restlessness called akathisia, and tardive dyskinesia, quirky movements and tremors that can be mistaken for Parkinson’s disease.

The weight gain and diabetes associated with antipsychotics are also legendary. A Victoria psychiatrist once told me the story of prescribing an antipsychotic to a new patient. By his next visit a month later, the psychiatrist couldn’t recognize the patient, due to the ballooning weight he’d gained.

SINCE 2003, there have been many regulatory actions against quetiapine and other “atypical” antipsychotics, which include drugs like olanzapine and risperidone, both in Canada and the US. Warnings from the FDA and Health Canada have included increased risk of diabetes symptoms, of death in elderly people with dementia, increased blood pressure in children and adolescents, arrhythmia (heartbeat rhythm abnormalities), sleep apnea (which can cause breaks in breathing or very shallow breathing during sleep), excessive sleepiness, low blood pressure upon sitting up or standing (postural hypotension), and problems with balance, effects that increase the risk of falls. In 2010, Quetiapine’s manufacturer agreed to pay a US $520 million fine over allegations of promoting off-label (unapproved) uses, such as for anger management, dementia and insomnia.

A report commissioned by the BC Ministry of Health in 2011 said that 50.3 percent of all residential care patients in BC “were prescribed an antipsychotic between April 2010 to June 2011.” Since then, this problem has been the subject of numerous reports and guidelines trying to tackle the issue, with limited success.

In 2015, the BC Seniors Advocate Isobel Mackenzie identified the continued overuse of antipsychotics and antidepressants in residential care as worrisome, noting that while only four percent of BC seniors in long-term care have a diagnosed psychiatric disorder, 34 percent of them were prescribed antipsychotics.

According to the Alzheimer’s Society of Canada, about one-third of Canadian residents in long-term care are prescribed antipsychotic medications, despite the fact that professional geriatric societies have long warned against the use of these drugs in the elderly, especially those with dementia.

THE PRESCRIBING OF ANTIPSYCHOTICS is not only controversial but expensive. BC Pharmacare lists quetiapine as the tenth most expensive drug on the Pharmacare formulary, paying over $16 million in 2017/2018 for the drug.

Three of the top 20 drugs in BC Pharmacare’s list of most costly drugs are antipsychotics.

Nationally, antipsychotics prescribed for non-seniors were the third highest public drug expenditure of all drug classes (fifth highest for seniors). In Canada this drug class consumes about $600 million in annual public expenditure.

Last year Mackenzie slammed the Province again for making very little headway in reducing the use of antipsychotic medications in BC’s seniors. While numbers have decreased slightly in recent years, compared to other provinces, she complained that BC had made little headway in 2018. In that year, a quarter of BC seniors living in long-term care were still getting an antipsychotic medication without a supporting diagnosis, which is to say, they may be getting them for off-label uses.

Physicians know that the elderly need much more delicate prescribing, partly because as we age, our bodies change, and the ability to metabolize drugs is also reduced. Kidney function often diminishes with age, and without appropriately clearing drugs from your body, drugs can build up in your system, causing other problems.

Geneva told me that on the antipsychotic, Roedy became so impaired and disoriented that “we were both worried about dementia.”

“What made you think that the problem might be due to the drug?” I asked.

Geneva said there were two things: A friend had warned her several months earlier that many local patients are being prescribed Seroquel for sleep, and had advised her to avoid it. When she heard Roedy’s psychiatrist mention Seroquel, she remembered this warning and realized that something was amiss. “The bubble-pack had listed only the generic name quetiapine, but not its purpose,” she said.

Questioning that drug and immediately withdrawing it, they both believe, had Roedy back to normal within a few days. His scores on cognitive function tests improved dramatically.

“I’m not very social,” says Geneva, “yet since this happened I have had three other people tell me they are regularly using Seroquel for sleep.” She adds that none of those people seem very functional.

The stories of patients prescribed drugs, often without awareness of their purpose, are endless, and the concept of “informed consent” seems to not apply. Many of us are too shy to question the safety and appropriateness of what is being prescribed, not wanting to be a prickly patient in a world where primary care doctors are a scarce commodity. As well, many busy physicians may not know, nor have the time to lay out the possible complications of an antipsychotic prescription. But often they’ll respond if asked.

The inappropriate use of drugs such as quetiapine could be costing society immensely—not just in cost for the drugs themselves, but also in the rate of falls, broken bones, head injuries, drug-induced diabetes, motor vehicle accidents, and commitments to long-term care facilities.

The wrong prescription drugs can be as dangerous as street drugs. But it doesn’t have to be that way. Roedy Green, who was losing his ability to function, was halted in his spiralling downhill by questioning the drugs he was being prescribed. Asking questions and questioning answers can often help change the course of one’s treatment.

The medical world is slowly starting to wake up to the dire harms related to antipsychotics, and turning to safer, more effective ways to help people sleep. Doctors know that managing insomnia needs to focus on education and encouraging good sleep hygiene. The other issue too is that maybe our obsession with getting eight hours of uninterrupted sleep every night is downright harmful.

Drugs, if needed, should only be used for the shortest possible time in exceptional cases. Now it’s important for patients to insist on this. This is true for antipsychotics, and almost every other drug you may be offered.

Alan Cassels is a drug policy researcher and works at UBC.