The daughter of an elderly dementia patient is revealing how her mother was given a potentially dangerous drug - unapproved for treating her condition - in B.C. care facilities.
Hilda Penner was given the anti-psychotic drug Loxapine, without consent and despite her daughter's objections, records provided by her family show.
"We told them they were not to give her anti-psychotic drugs," said daughter Doreen Bodnar of the care facilities. "We knew those drugs were terrible for her - that they did terrible things to her."
Penner was given Loxapine and other anti-psychotic drugs several times over a two-year period, as she was moved through several facilities in B.C.'s Fraser Valley.
According to Health Canada, Loxapine is intended for treating schizophrenia, but is not approved for dementia patients. In 2005, the agency warned anti-psychotic drugs have been linked to a higher death rate among seniors with that condition.
Records show the drug eventually contributed to Penner suffering a major seizure.
The 83-year-old died in November of natural causes. Her case is now under investigation by the provincial College of Physicians and Surgeons and the B.C. Ombudsperson.
"[Health care staff] made an invalid out of her," said Bodnar. "She couldn't walk and, a lot of times, she couldn't talk because they had her so drugged - and her condition got worse and worse and worse."
Doctor knew family's wishes: daughter
Penner was initially placed in Cheam Village in Agassiz in 2008. She had suffered from a stroke three years earlier. Bodnar said the family was unable to care for her at home, because dementia was setting in.
They chose Cheam because Penner's physician, Dr. Lachlan MacIntosh, was the medical director on site. Bodnar said MacIntosh knew the family was opposed to anti-psychotic drugs, because Penner had suffered adverse effects from another drug in that same class that she had taken after she had her stroke.
However, Penner did not settle in at Cheam, Bodnar said, and would constantly ask people to take her home.
"She wasn't ready to be locked up. She called me 17 times the first day. 'Get me out of here. Get me out of here. Get me out of here,'" said Bodnar.
"She was very repetitive. I guess that's why they started drugging her, because she just got annoying."
Doctor resigned
Records show MacIntosh authorized staff to administer Loxapine to Penner, after staff called him to say they couldn't settle her down.
"I did prescribe medications to Mrs. Penner without informing her family, not getting their consent," MacIntosh is recorded as saying in the records. "This was done, initially as a matter of urgency, in response to requests from nursing."
"He said [nursing staff] must have caught me in a weak moment," Bodnar recalled of her conversation with MacIntosh at the time. "That was the first thing that he told us. We were devastated when we found out that that's what he had done."
MacIntosh's assistant told CBC News he has "nothing to say" about the case.
In his response to the College, MacIntosh wrote Penner's agitation increased, to the point that she would "hit out" at other residents. He added that he often approved drug changes for patients over the phone.
"In defence of the prescription 'without consent,'" he wrote, "I would say this is probably a daily occurrence ... I had not been in the habit of informing families at that time."
Changes have been made since, he added, "I introduced a consent form for the use of anti-psychotics."
MacIntosh also told the College he also stepped down as medical director at Cheam, because of the fallout over the Penner case.
"I resigned...feeling I had been responsible for undue and unnecessary investigations of the facility by the authorities."
Family not informed of prescription
Bodnar said she discovered her mother was on the drug several weeks after it was first prescribed, when she showed up for a visit and her mother was incoherent.
"The care aide got her up - you know, he was just shaking her. 'Come on Hilda - wake up. Wake up.' She couldn't wake up. She was so dozy ... it was only then they told me she was being drugged."
Bodnar acknowledged her mother was very difficult for staff to deal with, but said she felt that was no excuse.
"I think that's the nature of dementia. I think you have to realize that when you take on the job. You don't have to drug people into oblivion, especially when it is threatening their life," Bodnar said.
Laura Watts, outgoing director of the Canadian Centre for Elder Law, pointed out it is illegal to give patients drug treatment without consent.
"It's clear. You cannot provide treatment to somebody unless they as a capable adult agree or if they are not capable the correct legal substitute decision maker. There is no end run that can be used," she said.
Watts said this is not an isolated case, and she has heard many similar complaints.
"This is happening as an epidemic across the country, and it has to stop. We would never accept drugging people with developmental disabilities, and what we are now doing is drugging our senior population into submission."
Dr. Paula Rochon at the Women's College Hospital in Toronto has studied the risks of using anti-psychotic drugs to manage dementia patients. She said there is almost always a better alternative.
"There are problems that can be solved in other ways," said Rochon. "We need to find better ways to manage these people so that they are comfortable and well looked after and they are safe."
Senior certified 'incapable'
Penner's family eventually took her to hospital in Chilliwack. Fraser Health then placed her in a "special care" unit at Maplewood House in Abbotsford, where staff again gave her Loxapine.
Her daughter complained again - in writing - and the drugs were stopped two weeks later.
Soon afterward, however, staff sent Penner to the Abbotsford Regional Hospital, where doctors certified her 'incapable' under B.C.'s mental health legislation. That meant her family no longer had any legal say over her care.
Watts said that the mental health legislation can be used inappropriately. "Once someone is certified - when you are in a situation of combat [with family] - it is a trap door that the system will use and certainly it is not appropriate to be used in most of these cases."
"We were scared when she was at the hospital to do anything," said Bodnar. "Because we were afraid when they certified her that if we spoke up at all they were going to just bar us from the hospital - and then mom would have nobody to speak for her."
Drugs triggered seizure
Records show Penner was put back on Loxapine again, and then suffered a major seizure.
"The seizure may be contributed to by her Loxapine and other anti-psychotic medications," reads a neurologist's assessment done at the time. "Nonetheless, I do not think we can stop them due to her extremely difficult-to-control behaviour."
Penner was eventually discharged to another care home in Langley, where Bodnar said she continued to deteriorate, but was not given any anti-psychotics. She died soon afterward, from complications caused by a blood clot.
Fraser Health declined a request for an interview, but sent a statement, which says anti-psychotic drugs are used on dementia patients when staff is unable to calm them down another way.
"While the preferred approach is to look for alternative ways to reduce the distress patients experience associated with dementia, medications, including anti-psychotics, are sometimes necessary."
'Standard practice': health authority
In Penner's case, Fraser Health calls the use of Loxapine "in keeping with standard practice."
B.C.'s acting health minister, Colin Hansen, indicated he is concerned about the increased use of such drugs in provincial facilities. He told CBC News he has ordered a review "immediately."
"We need to look more carefully at the manner in which the use of anti- psychotic drugs has grown," said Hansen. "I have asked Ministry of Health officials to work with the health authorities and to work with the College of Physicians and Surgeons ...to look at why."
Doreen Bodnar said she believes staff shortages, and perhaps lack of training or motivation, are the root of the problem.
"I think they want their job as easy as possible and a lot of times there is probably not enough of them," said Bodnar. "The doctors are not there to see if there's an actual problem."