Crisis behind closed doors
By Rob Wipond, June 2011
Data obtained through a Freedom of Information request show nearly half of all seniors in long-term care in BC are being given antipsychotics like Risperdal, Zyprexa and Seroquel. That’s almost twice the average for the rest of Canada and amongst the highest rates found anywhere in the world. And even though Health Canada warns these drugs cause a doubling of death rates in the elderly, care workers admit they’re mainly being used as chemical restraints in the absence of adequate staffing and proper oversight.
"IT WILL RELAX YOU.” That’s the only explanation hospital staff gave when administering the antipsychotic medication to Carl. At least, that’s the only reason he recalls—soon he began experiencing “very strange cognitive feelings.”
“I’m a reasonably logical person,” he says, but suddenly he was in a “swimmy universe that didn’t make any sense.”
Carl (not his real name) became indifferent to his normal interests; inexplicably disengaged when friends visited: “like I was talking to them through a tunnel.” He felt as if he was in a “mind meld” with the Alzheimer’s patient next to him, losing his memory and connection to the world. Though he reportedly looked more docile, inwardly he was intensely disturbed. “I wasn’t relaxed at all.”
Carl didn’t understand what was happening and assumed the serious physical illness for which he was receiving treatment was the cause. Yet his experiences come straight out of the clinical drug literature.
A 2009 study of people’s subjective experiences with taking antipsychotics found many complained about “cognitive impairment” and “emotional flattening,” while few mentioned calmness or relaxation.
Antipsychotics are a class of tranquillizing drugs routinely used to help rein in the minds of people diagnosed with intense schizophrenia. In recent years, they’ve been used increasingly (albeit usually in smaller doses) to “calm” elderly people with dementia in hospitals and long-term care facilities.
Yet they’re hardly benign. Now widely described in medical literature as “chemical restraints,” common effects include foggy somnolence and disorientation, cognitive impairment, akathisia or “inner agitation,” extreme weight gain, diabetes, loss of muscle control, and muscle rigidity. Within a year of use, fully one-third of seniors will have Parkinson’s-like tremors from drug-induced brain damage. Within several months of use, death rates of seniors double—mainly from heart attacks.
Fortuitously for Carl, one long-time friend visiting him daily happened to be a nurse. She knew his illness could’ve precipitated some temporary psychological slippage, but nothing like what she was seeing.
“His personality was changing,” she says. “His cognitive level was changing in a downward spiral.”
But hospital staff barely knew Carl except in this irrational, helpless state, so they told her she should prepare for her 65-year-old, recently retired friend to spend the rest of his days in a nursing home.
After hearing of Carl’s story, I wondered: How many more like him are there?
Half of all residents are given antipsychotics
For two years, I tried to find out how many seniors in BC long-term care facilities were being given antipsychotics. Freedom of Information deadlines came and went. Not a single report, document, or email appeared.
It seemed unbelievable that this number wasn’t known. Since 2002, Health Canada has been repeatedly warning doctors against using antipsychotics in seniors with dementia because of the doubling of death rates. Nevertheless, antipsychotic use in Canadian nursing homes has continued rising inexorably, and alarm has been spreading through the medical literature and media. In 2006, BC spent $76 million on antipsychotics, making them our fifth most expensive class of drugs (for comparison, that’s double the arts and sports funding in our provincial budget). Yet no one in BC’s health ministry had the slightest interest?
Even my contact at the Office of the Information and Privacy Commissioner became frustrated with my persistence. “I can’t keep going back just telling them to search again,” he said. Repeatedly.
And then in March of this year, it magically appeared (see downloadable document below). A provincial-wide analysis using PharmaNet data had been completed months before I’d first asked to see one in 2009.
So now we know: Nearly half (47.3 percent) of seniors in long term care facilities in BC are taking antipsychotics. That’s close to double the US and Canadian average of 26 percent, and four times the rate of Hong Kong, which is at the low end of the spectrum.
“Do we have any answers...as to why BC has a higher use of antipsychotics in LTC [long-term care]?” wrote Darlene Therrien, a health ministry research and policy director who was wondering if a methodological error could be producing such huge BC numbers.
“I can’t see any issues in the data that would explain it,” emailed analyst Brett Wilmer. “I’m pretty sure it’s a health system phenomena...”
When I received these documents, I requested interviews. Ministry of Health spokesperson Ryan Jabs emailed back, “I can’t find a person from the program area who is comfortable speaking with media on this topic.”
So we’re left on our own to figure out what those BC health system “phenomena” are—and how dangerous they might be.
Shocking lack of shock
Why such shockingly high numbers in BC? Those statistics, after all, suggest that in the next six months alone, antipsychotics will kill more than one hundred South Island elders. Yet when I investigate, it seems I’m the only one who’s shocked.
The Vancouver Island Health Authority lets me interview senior geriatric psychiatrist Dr Michael Cooper, Long Term Care medical director Dr Tom Bailey, and Long Term Care contract manager Norm Peters. VIHA won’t connect me with anyone who actually works in local nursing homes, though. So I dig up various health care assistants (HCA), licenced practical nurses (LPN), and registered nurses (RN) who’ll speak anonymously because they’re concerned about the issue.
For outside perspectives, I contact UBC’s Therapeutics Initiative (a renowned independent research group which, as The Tyee has ably reported, the BC Liberals have threatened to gut at the request of pharmaceutical industry reps). The Therapeutics Initiative put me in touch with its pharmacy services director Dr Adil Virani and Vancouver General Hospital’s Dr Thomas Perry.
All the physicians assumed from studies elsewhere that BC’s rate would be around 30 to 40 percent.
“I wish I could say I was shocked,” comments one nurse. “But I’m not. It hurts me. It saddens me.”
Many long-term care providers, in fact, suspect the number is low, and offer guesstimates for Greater Victoria like 85, 90 and even 100 percent.
“Antipsychotics are a regular part of the medication routine,” says one LPN. “It’s almost an admission requirement.”
“Show me the data,” responded a skeptical Dr Bailey to that, nevertheless conceding VIHA hasn’t investigated to find the actual rates.
Regardless, even 47.3 percent is far too high, says Virani. “Those aren’t anywhere close to incident rates for diseases that you would typically want to use these drugs for. So it suggests to me that these drugs are often used as a chemical restraint.” And at 90 percent, he adds, “I would want to go into that setting and say, ‘What the hell is going on?’”
The “benefits” of antipsychotics
Most long-term care staff don’t equivocate on what the antipsychotics are being used for. There are no Norwalk-style epidemics of schizophrenia breaking out in our residential facilities.
“It’s all for behaviour management purposes,” says an RN. “We have behaviours that are problematic, there’s no question.”
VIHA’s Cooper, the geriatric psychiatrist, gives a more refined answer, saying antipsychotics can be “enormously helpful” for dementia patients in efforts “to reduce the fearful emotional state which may be associated with agitation and aggression.”
In conjunction with that, VIHA’s Long Term Care medical director Bailey suggests our residents tend to be older, more physically dependent and suffering from more problematic dementia and dementia-related behaviours than in the past.
Long-term care staff describe neck choking, broken bones, thrown objects, constant wailing, incessant wandering, verbal harassment, disorderly insomnia, and all other manner of disruptiveness, and say tranquillizing antipsychotics help prevent and manage such behaviours.
For those reasons, many working in long-term care feel residents gain a higher “quality of life” from the drugs, and are less likely to have to suffer physical restraints. “They would have tremendous anxiety, agitation and distress if we were to take them off of those,” says one LPN.
However, the science does not support most of these assertions about higher quality of life. There are good reasons almost no antipsychotics have ever even been approved by Health Canada for any uses in seniors with dementia.
A 2010 Therapeutics Initiative report found certain antipsychotics “widely prescribed” as sleep aids “in the absence of evidence for effectiveness or safety.” A landmark 2006 US National Institute of Mental Health study, like a 2008 Cochrane Collaboration meta-review of all studies, found that for the vast majority of seniors with dementia, slight benefits of any kind from any antipsychotics were “offset by intolerability to associated side effects.”
Besides, apart from being amongst the world leaders in antipsychotic use, Canadian nursing homes also still use physical restraints more than most—over three times as much as in US homes and five times those in Switzerland.
And there’s been no demonstrable decrease of nursing home violence or injuries in sync with rising antipsychotic use. A 2010 International Journal of Geriatric Psychiatry study found preventing violence or helping patients feel better are not the real reasons the drugs are usually prescribed, anyway. “Noisiness/verbal aggression is increasingly associated with the use of regular antipsychotics, rather than physical aggression, agitation or irritability,” the authors stated.
That 15-year overview, much like a study examining 485 Ontario nursing homes, found that there were huge variations in prescription rates across facilities, regions and years, and the rates bore no relationship to patients’ levels of dementia, dependency or disruptiveness. The authors concluded that “the use of antipsychotic drugs in nursing homes is greater and less systematic” than ever before.
So what the hell is going on?
Unclear decision-making processes
Doctors prescribe antipsychotics in two ways. One is for regular daily intake. The other is called a PRN (from the Latin pro re nata) or “as needed” prescription, which is intended to be administered by carers in response to certain conditions or situations.
VIHA’s Cooper says individual care plans have “specific indications for when a PRN dose would be used.”
But long-term care staff say there’s enormous leeway, because the instructions they read often simply say general things like, “if agitation intervention is not effective,” “as needed,” or just “PRN.”
In response to pain, discomfort, aggression, sleeplessness, anxiety or disruptive behaviours, says a nurse, “I have a shopping list of PRN medications I can use.”
And decisions about how and when to sedate with antipsychotics are often heavily influenced by issues other than the good of residents.
“I’ve seen nurses whose main goal is to get the person off every single medication they possibly can,” says an RN. “Other people just medicate ad lib and medicate just to have the person quiet, just to have the person out of the way, and if they’re semi-comatose that’s fine, they’re not bothering anybody.”
A health care assistant describes a typical incident where a resident was “wailing” for no discernible reason, and was about to be given antipsychotics. Then she noticed the resident had bedsores on her back. “So I get her off her back onto her side, put a warm blanket there, brace a pillow behind her...I hold her hand and I talk to her, and she goes to sleep.” However, she continues, for that kind of caregiving, normally, “I don’t have time. In one of the facilities where I worked there were two staff and there were 50 residents [at night].”
Along with pressures from understaffing, comments an RN about this story, growing legions of casual, rotating care workers (including RNs) rarely get to know residents well enough to make good assessments or effectively intervene in a crisis with such warm, personal familiarity.
Indeed, many nurses say resident health records can’t even be maintained well enough in this context to understand residents’ true, often-changing circumstances and make good decisions about proper interventions. “The documentation is extremely crappy,” says one RN, echoing others. “Because there’s no time.”
Antipsychotics, continues the RN, then often become the quick fix “Timmy Horton’s drive-through” solution to any crisis.
Meanwhile, the physicians, many of whom only visit weekly or bi-weekly, rely on this same, weakening infrastructure of feedback. Consequently, one nurse explains, earnest doctors who wish to support harried staff are often most strongly influenced by whoever’s working and complaining loudest when they visit the facility. “The psychiatrist sort of is like a little pool ball that goes boing boing boing boing, based on whoever talks to him. They change medications, increase and decrease, and change it waaaaay too fast, before anything’s even evaluated or assessed.”
Cooper says he hasn’t heard such concerns, but states, “These medications should only be used in a very narrow range of circumstances related to psychosis and management of aggression that has not responded to non-medication approaches. Our geriatric psychiatrists are endeavouring to apply those recommendations consistently.”
Nevertheless, Cooper concedes his department is similarly too busy to examine if its psychiatrists are in fact collectively meeting those recommendations. “We’re on the ground trying to provide service to an enormously large number of nursing homes and nursing home residents, so we’re kind of run off our feet trying to make sure we provide the best possible clinical care.”
Evidently, all of this is why the Journal of Geriatric Psychiatry study said that lightening the “burden” on carers while simultaneously developing “clear guidance” for improved drug and non-drug crisis interventions is “a matter of extreme urgency.”
Perhaps not surprisingly, then, along with disregarding the lack of scientific support for antipsychotics in their rush to solve problems with drugs, many professionals haven’t bothered to keep apprised of their dangers, either.
For example, even though they were usually self-described to be more concerned and critical of the drugs than most, none of the long-term care staff I spoke to were even aware that Health Canada had issued warnings against seniors taking antipsychotics.
Virani regularly gives talks to health professionals, and confirms he’s also seen “mixed” levels of knowledge about their dangers amongst doctors, long-term care staff and pharmacists. “For me that seems like they’re missing something,” he comments, “especially if they’re prescribing or handling these drugs.”
VIHA’s Bailey is more circumspect. “It’s a very complex environment to be fully apprised of every single possible nuance of everything that you do.”
Dr Perry of Vancouver General Hospital understands but still worries about such lack of professional knowledge. Particularly with antipsychotics, he says, because they’re notorious for inducing precisely what they’re often used to control: restlessness or agitation. “That one is important to understand for anyone in the field,” he says. “Giving more drug may increase the restlessness.” Worse, he points out, the “paucity” of expressiveness common in people on antipsychotics makes assessments of their well-being almost impossibly challenging.
Which raises another pressing issue: What if you don’t want them?
Offers you can’t refuse
In these hectic environments, it’s easy to see how the preferences of residents themselves or their loved ones could be disregarded—a complaint that’s been emerging in media stories lately and frequently expressed to me.
In principle, residents have the right to refuse these drugs or, if they’re not deemed competent (and Bailey says they are not “99 percent of the time”), legal guardians hold that right.
However, while all the long-term care staff I spoke with routinely obtained consent from legal guardians for the use of physical restraints, none had ever done so for chemical restraints.
And if doctors discuss it, claims one LPN, they won’t say they’re chemically restraining your loved one, “They’ll say, ‘It will keep them calm and comfortable, and they’ll settle in more easily.’”
Bailey, VIHA’s Long Term Care medical director, says those rules are being tightened.
VIHA has a policy to “use the least restraint possible,” but following a 2010 directive from the BC Ministry of Health, VIHA recently issued more details and a consent form mentioning chemical restraints.
“The newer rules will ensure that there is more transparency,” says Bailey. “They’re not going to overlook informing family, because it’s required.”
However, there’s a gaping loophole. The policy defines a chemical restraint as any drug used to tranquillize a person’s behaviour and that “is not needed to treat medical or psychiatric symptoms.” Dementia-related behaviours, of course, are virtually always considered to be both medical and psychiatric symptoms.
“If [an antipsychotic] was prescribed as part of a regular care plan,” confirms Peters, VIHA’s Long Term Care contract manager, “it may not be considered to be a restraint.”
And if at that point you try to refuse, you may be perceived to be denying appropriate medical treatment and deemed incompetent to continue as legal guardian.
“I know from personal experience how abusively RNs and health authority bureaucrats have used antipsychotics, especially with their absolute sense of entitlement to do so,” declares one woman to me, who’s now taken a battle over her mother’s care to the Health Professions Review Board.
So essentially we’re forcing seniors and their families to accept this massive drugging campaign, even when the science and our own health regulator are warning it’s dangerous and misguided. Once again we have to ask, what the hell is going on? How did this monstrous fad get started?
Well, there appear to be billions of explanations.
Billions of reasons
Most antipsychotics aren’t legally approved for use in dementia patients. Although individual doctors have some discretion to prescribe drugs as they deem suitable, it’s illegal for pharmaceutical companies to promote such “off-label,” unapproved uses.
Companies do it, though. With seditious creativity. And they’ve made their antipsychotics into multibillion dollar cash cows largely by spending untold sums persuading health professionals they’re safe and effective for dementia patients in nursing homes. Settling the ensuing lawsuits seems to have become just part of the business plan.
In the US, AstraZeneca has settled innumerable lawsuits worth hundreds of millions of dollars with individuals and governments for hiding the dangers of their antipsychotic and illegally promoting its use for dementia patients. Pfizer and Eli Lilly both settled similar massive lawsuits, while Bristol Myers Squibb was additionally caught giving kickbacks to nurses and physicians for prescribing their antipsychotic. Johnson & Johnson was also caught giving tens of millions of dollars in kickbacks to pharmacies such as Omnicare.
All of these companies, including Omnicare, operate in Canada.
Queried about it, Health Canada issued this written response: “Health Canada is aware of the litigation involving off-label promotion of antipsychotic drugs in the US. We have no evidence of similar issues in Canada—that is, no systematic promotion of off-label use of antipsychotic drugs has been reported to Health Canada.”
Yet VIHA allows pharmaceutical reps to visit its facilities, as long as they get an appointment. Dr Cooper admits to meeting with pharmaceutical reps regularly when in long-term care practice in Penticton five years ago. Perry refuses such visits at Vancouver General Hospital, but promptly recounts how just recently two nurses told him about attending free dinners sponsored by AstraZeneca.
It seems naive to imagine that pharmaceutical companies simply play nicer here. If anything, Canada’s lack of whistleblower protections, poor record on investigating white collar crime, anaemic RCMP, and close-knit ties between pharmaceutical companies, researchers, health professionals and regulators have likely made us more gullible victims.
Changes ahead? To a degree...
Everyone I spoke with agrees we need to cut back on antipsychotic use in nursing homes—but with somewhat differing levels of, well, zeal.
“That’s really the big debate when you do a talk on this,” confirms Virani. “They’ll say, ‘Okay, Adil, I understand we shouldn’t use these drugs. Give me another solution.’ And that’s where it kind of falls down...In lieu of enough staffing, and in lieu of a safe environment, [antipsychotics] seem to be the best choice.”
VIHA’s Bailey is cautious. “It would be a fair statement to say that we would like to see fewer people on them,” he says. “But when you look at many [situations in which antipsychotics are being given] they may well, at least in the short term, be justifiable. In fact, it is my guess that the majority are.” He suggests, though, there may be some percentage who could be taken off them “as soon as is practical.”
Dr Perry conversely argues that antipsychotics should strictly be used in emergencies to temporarily subdue a person engaged in physical violence. “The side effects are so potent,” he says, “their use in [anything other than schizophrenia] should be very, very tightly limited.”
What about drugging to prevent people from becoming violent?
“The prevention against that ought to be multidimensional,” Perry responds. He describes a dementia patient who lashed out whenever someone peeled back the privacy screen while he was peeing. Why drug him, he asks, instead of avoiding humiliating him? “In a sensible system, everyone would be looking for hazards and attempting to remove them.”
“Every behaviour has a reason behind it,” agrees an LPN. Therefore, care providers need more training in alternative approaches to using chemical restraints, she argues, but “VIHA doesn’t believe in that.”
Although some changes, apparently, have gotten rolling.
In VIHA’s new guidelines, there’s a page suggesting various assessment procedures and non-drug interventions before proceeding to chemical or physical restraints. (However, by comparison, Vancouver Coastal Health issued eleven pages on antipsychotic restraints alone, including minimal dosage recommendations, creative alternatives, and warnings about carers’ “poor adherence” to alternative forms of crisis intervention.)
Peters feels an internationally recognized “residential assessment indicator” tool that’s been newly instituted in BC should help assess patients’ need of an antipsychotic.
Bailey says VIHA has begun developing an overarching long-term care medical advisory council. “It will be the first time we’ve had a structure that will enable us to address particularly critical issues and develop standards of care for our facilities.”
Pharmacy by-laws mandate long-term care patient medication reviews every six months, but currently they’re often done cursorily by mail or fax rather than in multidisciplinary teams, in person, like they ideally should be. Bailey hopes to “develop some better processes to ensure that actually happens.”
Meanwhile, this April, our provincial government issued a request for proposals to review antipsychotic use in long-term care.
“The media has raised concerns about the use of antipsychotics in long term care facilities,” the backgrounder stated. “Their concerns focus on whether appropriate consents are being obtained...and whether these medications are being used as chemical restraints due to insufficient staffing.”
The review is due at the end of June.
Most carers, though, feel they know already what’s needed: More staff, more stable staffing, and better trained staff. Plus better environments.
One RN describes a large Calgary facility with walkways, vegetation, benches and fountains. “The residents walked [a lot], they slept at night, there was almost no use of antipsychotics.”
Back in hospital with Carl, though, his nurse-friend was “horrified” to find him one day tied in four-point restraints, and still being pumped up on a “calming” drug that was, evidently to her, making him increasingly confused and agitated.
Partly due to her pleading, he was experimentally taken off his antipsychotic prescription after three weeks.
“Within days, I was back to normal,” Carl says, even though it would still be weeks more before he’d emerge from his physical illness. “I was laughing and joking with the nurses, I was carrying on normal conversations with my friends...It was like I woke up...I remember wanting to connect, I started to want all the familiar things in my life.”
After a year back at home on his own, Carl praises the “excellent care” he received in hospital, with this one notable exception.
“Had I not been fortunate enough to have a friend who was not only an advocate for me but a registered nurse, there’s every possibility I might have continued to receive those drugs and have been placed in a permanent facility out of my mind for the rest of my life.”
Rob Wipond is a finalist in this June’s Western Magazine Awards for his regular Focus column. He has been a freelance writer of magazine features, news articles, political commentaries, social satires, theatre and performance art for over two decades.