To help their 91-year-old father manage anger and aggression related to dementia, his children went rogue with his medical care.
Without telling his doctors, they’ve been treating him with cannabis.
One of his daughters has a medical background. A retired nurse living in Portland, she had heard about the possible benefits of marijuana extracts in Alzheimer’s patients. Though there was little research on the topic – and it has a dubious federal legality in the United States – cannabidiol oil, became a last resort for the family.
“Things were getting really bad and he wasn’t going to be able to stay at home because of his aggressive behavior,” his daughter said.
For the past year, with the consent of her siblings and as her father’s medical decision maker, she has been giving him capsules of the oil. The compound has been shown to help with anxiety, pain and other ailments. It doesn’t contain the compound that creates a high in marijuana.
The Oregonian/OregonLive is not using the family’s names at their request for privacy reasons.
They felt let down by the medical establishment as their situation became more and more dire. Faced with having to institutionalize their dad, the family decided the risk was mild.
But there are risks. One doctor I spoke to warned others from trying it without informing one’s physician, saying cannabis could have adverse effects when combined with other medications.
For this family, though, the results were worth the risk.
“He’s so much calmer,” one daughter said. “He still gets confused and still wants to go home (when he is home) but he’s not upsetting everyone. He just seems happier. He smiles more.”
The family had become concerned by their father’s aggression, irritability and obsessive-compulsive behaviors. He had cut upholstery from the furniture and once smashed a light switch off the wall.
“When it got to its worst, he put his hands on one of the caregivers and shook her,” his retired nurse daughter said. “She went to the bathroom, locked the door, called my brothers.”
Then, she caught a story on the nightly news about a small study out of Israelshowing that cannabis helped Alzheimer’s patients sleep at night, become more social and less aggressive. She pitched the idea to her siblings.
“I was a little concerned at first, just the unknown of it,” his other daughter said, “but (my sister) had read a lot of research and filled us in on what she had read and we felt like we didn’t have a lot of options. We didn’t think it would harm him if we could try it.”
The family didn’t tell the 24-hour, in-home caregivers what their father was taking. They said only that they were trying a new medication.
The daughter used her nursing background to approach it scientifically, starting with a small dose of 5 milligrams per day and asking the caregivers to fill out a questionnaire at the end of each shift documenting her father’s appetite, sleep behaviors and mood.
“I needed to be able to measure what was happening,” she said.
She increased his dosage little by little, taking months to find a helpful amount.
It’s expensive – she estimated his monthly dosage would cost $600 retail – and it’s not been a cure-all. He still isn’t sleeping through the night, but he’s no longer aggressive.
Both women believe their father would be in a care facility without cannabis.
But they said it shouldn’t be this difficult. Doctors weren’t helpful, and his daughter had a hard time finding credible research on cannabis.
“What if there’s a downside to this? Will we ever know what it is?” she asked. When it comes to long-term effects on seniors, “We don’t have any idea. So it’s just feeling your way in the dark.”
And that’s what concerns doctors like Robert Hendrickson, associate medical director of the Oregon Poison Center at Oregon Health & Science University.
“If you’re not asking your physician about advice about a medication, then who are you getting your advice from?” he said. “You’re asking a medical cannabis dispenser who has no medical training, who doesn’t understand the adverse effects… who has a financial stake in your decision to determine what is effective, what the correct dose is, and in what form.”
Institutions that receive federal funding, like OHSU, have shied away from medical cannabis. Their physicians will not help a patient acquire it.
It creates an information gap – patients don’t feel they can talk to their doctors about it, doctors aren’t necessarily well-versed in the latest cannabis research, and patients then seek advice from people without expertise.
Janice Knox, an anesthesiologist who founded American Cannabinoid Clinics in Portland with her family of doctors, is trying to be that resource.
“It’s really sad because they (patients) are looking for information,” Knox said. “They want to use their doctors, they want someone to sit down and just talk to them about the pros and cons of cannabis.”
Knox cautioned people against consulting “the University of the Internet. It’s all over the place and people don’t know what’s true, what’s not true.”
But she wasn’t troubled ethically by the family’s choice to dose their dad.
“I don’t look at it as an ethical thing at all, no more than a patient giving a child an aspirin,” Knox said. “A child hasn’t consented to having an aspirin, but in our best judgment a child may need that aspirin. I think what’s happened is there’s been such a stigma from using marijuana that people feel like it’s a big negative thing, that it’s a crime they’re doing, something they have to hide … and they’re made to feel guilty for using it.”
It comes back to medical professionals educating themselves and having candid conversations with patients, even though research on cannabis is limited by the federal government’s classification of it as a drug with no medical value.
“If we’re going to deal with the federal problem, it’s going to have to come from our professional societies saying look, this is the practice of medicine, we consider this a valuable tool in this practice of medicine, let’s talk about this,” she said.