Karly's overdose: Whose fault?

Family says registry might save others

Like a dedicated bargain shopper, Karly Long went from doctor to doctor seeking the pills that would ultimately lead to her death.

No one seemed willing or able to stop her, though her family tried in vain to convince Toronto physicians she needed more than a plethora of prescription drugs to treat her bipolar disorder. The week before she died, Karly would obtain hundreds of pills - anti-anxiety drugs, anti-depressants, mood stabilizers, pain killers. She would get them in doctors' offices, walk-in clinics and hospital emergencies.

An exasperated Penny Long asked her 29-year-old daughter why she was taking so many drugs.

``Mom,'' she replied, ``nothing works.''

The Long family says she was right.

Nothing - not the drugs, and certainly not the health care system - worked for Karly.

One Sunday last May, Karly's body was found in her North York apartment. Toxicologists found evidence of eight prescription drugs in her system.

Her parents are calling for a drug registry in Ontario, one that enables doctors, emergency physicians and pharmacists to track and monitor a patient's prescription intake.

It is unclear how many deaths from prescription drugs occur each year in Ontario, due to under-reporting. But in 1998, a University of Toronto analysis of existing studies estimated adverse drug reactions kill 10,000 Canadians each year.

A central drug registry, similar to one in British Columbia, may have prevented Karly from falling victim to a cycle of drug dependency and eventual death, her family says. If anything, they argue, it would compel doctors to be more accountable for what they prescribe.

``What gives them the right to give out these powerful medications and not even monitor it? It's life and death with drugs,'' says Long. ``As far as I'm concerned, it was like handing her a loaded gun.''

Karly's family - her mother, father Jack and siblings Kim, Kelly and JJ - are united in their push for a drug registry. But they have stumbled into a debate that pits concern for patient safety against the more far-reaching concerns of a person's right to privacy.

Dr. Brian Hoffman, chief of psychiatry at North York General Hospital, agrees the concept ought to be explored. But Ontario's privacy commissioner, Ann Cavoukian, warns medical information - especially on prescribed drugs - that can be copied, downloaded or potentially fall into the wrong hands, can permanently damage a person's chance at a job or housing. It can destroy a life.

Karly's mother disagrees, and warns that something must be done to prevent another tragic death.

``The seriousness of someone dying or committing a violent crime - isn't that far worse than someone not getting a job?'' she asks.

The idea of a prescription drug registry has been bandied about by Ontario politicians in the past. Just last month the chair of the Health Services Restructuring Commission called a drug registry a natural evolution of the recommended reforms for primary care.

``We spend far too little on health information development,'' said commission chair Dr. Duncan Sinclair.

``We've got a big problem that we have to fix, including the aspect of a drug registry to foreclose on the kind of tragedy that the family you refer to went through.''

The coroner has yet to deliver his final report on Karly's death. But toxicologists found she had eight drugs, mainly painkillers and anti-anxiety drugs, in her system when she died.

They included oxycodone, acetaminophen, clonazepam, lorazepam, gabapentin, nefrazone, alprazolam and triazolam. All were within the acceptable limits, except oxycodone, which was double the acceptable level. The levels suggest Karly died of an accidental, not an intended, overdose.

Perhaps more intriguing is that the drugs were prescribed by as many as 11 doctors in the last two weeks of her life, according to information pieced together by the family using medical records and drug receipts.

Among the prescribing doctors were the family physician, Dr. Marilyn Hopp, physicians at the emergency ward at North York General and at walk-in clinics, notorious drop-ins for addicts. Hopp and North York General declined to comment on Karly's case due to a lawsuit by the Long family.

When police found Karly's body in her apartment on the morning of Sunday, May 16, they picked up half a dozen bottles of pills, an unfilled prescription for Tylenol 3, and 10 pharmacy receipts issued over the previous two weeks.

Later, when the family went through Karly's apartment, they collected still more prescription bottles in her medicine cabinet and more receipts in jacket pockets.

There was no suicide note. On the contrary, Karly - who, her mother says, never gave up hope of getting well - left behind a list tacked up on her fridge entitled ``Karly's Goals.''

One of those goals involved a last-ditch attempt to get admitted to Homewood Health Centre, a private addiction and treatment centre in Guelph.

She and her family had pressed their family physician to sign a referral for Homewood. The doctor finally agreed, although she wasn't convinced it was the right place for her.

But Karly was determined. Four days before her death, she faxed the pre-admission form to Homewood. On the cover page she scribbled: ``Please if there is anything you can do to get me in faster I would really appreciate it. I'm desperate.''

Dr. James Young, chief coroner for Ontario, said while an inquest into Karly's death is not out of the question, the difficulty is in deciding how to stop someone who is obviously drug-seeking or double-doctoring.

``They don't walk in and say `I'm a drug addict and I need codeine and I was just down the street getting codeine at another clinic.' And they don't say `I want help with my drug habit.' They say `I have a pain in my neck and I need medication for it,' '' he said.

``The issue of double-doctoring is a valid issue, but it's also a very complex one.''

The B.C. government set up PharmaNet for its 4 million residents in 1996 and while critics still question its advantages, government officials claim it has been hugely successful.

Funded by the Ministry of Health - at a cost so far of $56 million in capital and operating expenses - and managed by the College of Physicians and the College of Pharmacists, PharmaNet has been touted as a way to stop adverse drug reactions and double-doctoring.

The government claims at least 5,000 duplicate prescriptions have been discovered, and not filled, by pharmacists as a result of the registry. The province recently expanded its drug database from pharmacies into hospital emergency rooms and, just last month, into 100 doctors' offices as a pilot project.

Now Manitoba, Quebec and Alberta are exploring the idea.

In Ontario, the only equivalent is the Ministry of Health's own Healthnet, which has an adverse-drug warning system for pharmacists, specifically dealing with drugs prescribed to seniors and welfare recipients with the Ontario Drug Benefits Plan. Health insurance companies keep their own records, and some pharmacies, notably Shoppers Drug Mart, have their own internal system.

But any central database, with private medical information accessible to a variety of users, is highly risky and very expensive, says Dr. Ted Boadway, health policy director for the Ontario Medical Association.

``I would personally not favour a plan that didn't require consent. I don't think people should have their drugs available on a computer for whomsoever gets into it at their wish. People have privacy rights,'' he says.

Ontario privacy commissioner Cavoukian agrees, saying the only way such a registry could be set up is if there was privacy legislation accompanying it. All three major political parties have talked of such legislation. None has passed it, she says.

If any medical information is to be released, ``the individual should be the one to make the decision,'' Cavoukian says.

As a drug seeker, Karly probably would have refused consent, although presumably a drug registry would have stopped her from getting to the point where she was drug dependent. But Suzan Fraser, the Long family's lawyer, says what is unique about Karly is that she wasn't necessarily rejecting help.

``What's tragic in this case is she was someone looking for help and I think the system let her down,'' she said.

For months, the Longs battled doctors, nurses and receptionists, pleading with them not to give her more drugs and warning that Karly was becoming addicted to certain prescriptions. The family says they were stonewalled.

Even so, in the year and a half before she died, her family doctor, a psychiatrist at North York General Hospital and an emergency room physician all noted in their records that she was ``drug seeking'' or abusing benzodiazepines, drugs given to treat anxiety - the same kind of drugs found in her body.

Kim Long believes her sister's right to privacy should have been overruled by her right to live.

``We called doctors, psychiatrists, hospitals and anyone else that would listen. We screamed, we cried and we begged for help. No one would listen,'' she says.

On May 9, six days before her death, Karly was picked up by Toronto police for trying to pass fraudulent cheques in a Sears store.

The police and her family escorted Karly to Dr. Marilyn Hopp's office, where they discussed getting her into hospital. Karly reacted with anger and threatened suicide if she was admitted.

With that, the doctor filled out a Form 1 and Karly was taken to hospital to be admitted. She was seen by Dr. Bernard Stein, a psychiatrist in the emergency department who noted ``a long history of substance abuse'' and both a mood and personality disorder. But she was not suicidal, he decided. Karly was told to report to the hospital day program and sent home in a cab around midnight.

Karly showed up to the day program over the next three days and told the staff she was trying to get into Homewood. On the fourth day, she called to say she was too tired to come in. On the fifth day, she died.

Dr. Brian Hoffman, chief of psychiatry at North York General, said governments and health professionals across the country are looking for ways to build health information networks and ensure patients' records follow the patient. Drug information, as one aspect of that, warrants being looked at, he says.

``It may stop patients who abuse their medications or get multiple prescriptions. And if there was a co-ordinated system it may stop adverse drug reactions,'' he says.

The Longs have set up a Web site http://www.karlylong.net/ in hopes of finding similar cases and support for their quest.

Penny Long says she is reminded of a remark made by one of Karly's doctors who had some success treating her in Barrie.

``Remember,'' he said. ``Karly is not a bad girl trying to get good, she is a sick girl trying to get well.''