Ottawa woman with rare pain disorder denied medically assisted death
Ophelia Brown and her family have been turned away after months of fighting for access to medical assistance in dying (MAID).
It's a decision the 22-year-old Ottawa woman and her family never thought they would have to make.
“It’s been awful, watching her lose the ability to do the things she loves and lose her future,” said her mother Sheila Craig.
After more than a decade of severe pain, battling a rare disease called complex regional pain syndrome, Ophelia Brown and her parents, Sheila Craig and Ian Brown, decided to apply for a medically assisted death.
“There just isn’t anything worth living for anymore; it’s just pain and all I can see ahead of me is the pain getting worse. The best way I can describe it is it wasn’t time until it was time,” Ophelia said.
Complex regional pain syndrome is a condition that causes excess and prolonged pain that is much greater than normal. In chronic and severe cases, the pain can be disabling.
“When she talked about ending her life, as awful as it is as a parent to hear that, we totally understood,” said Craig.
As of March 2021, there have been changes to the medically assisted dying law.
Patients are no longer required to have a foreseeable natural death—a condition that will worsen over time may qualify.
That change allowed Ophelia to apply, but she was denied and told her case was too complex.
“No doctor is willing to touch her case; no doctor is willing to actually assess her. It’s just been devastating for all of us,” said Craig.
The Ottawa Hospital handles local assisted death requests. In a statement, they said doctors "have the right to choose whether or not to participate on a case-by-case basis."
“The course of doing MAID assessments is a very complicated and complex process. You’re not always going to find clinicians agreeing and sometimes clinicians will disagree with the patients,” said Dr. Chantal Perrot, a MAID physician and board member at Dying with Dignity.
Over the last five months, Ophelia's family has fought for her to receive access to a medically assisted death but has been continually turned away.
Time is not on their side. Ophelia's chronic pain condition is getting worse.
“In the five months I’ve spent fighting for my right to a dignified death, my disease has spread in ways I could not have predicted,” Ophelia said. “My body has shut down, and the emotional toll this process has had on me and my family is immeasurable.”
So, Ophelia and her family have chosen an ever more difficult path.
“She’s suffered for 14 years. How long do you have to suffer to access what is legally your right?” asked her father, Ian Brown.
A feeding tube has been removed and Ophelia will now only receive palliative care.
“Ophelia was quite distressed because it’s not dying with dignity in the same way that MAID would’ve been, in terms of maintaining the quality of life until the end,” said Brown. “There will be more suffering.”
Ophelia and her family will spend the remaining time they have together hoping to make lasting memories and fulfilling her final wishes, but it's not the end they hoped for; it will actually be worse.
“It’s been utterly brutal and not at all the way the last few months of our daughter's life should’ve been,” Craig said.
CTVNews.ca Top Stories
More than 115 cases of eye damage reported in Ontario after solar eclipse
More than 115 people who viewed the solar eclipse in Ontario earlier this month experienced eye damage after the event, according to eye doctors in the province.
Last letters of pioneering climber who died on Everest reveal dark side of mountaineering
George Mallory is renowned for being one of the first British mountaineers to attempt to scale the dizzying heights of Mount Everest during the 1920s. Nearly a century later, newly digitized letters shed light on Mallory’s hopes and fears about ascending Everest.
Toxic testing standoff: Family leaves house over air quality
A Sherwood Park family says their new house is uninhabitable. The McNaughton's say they were forced to leave the house after living there for only a week because contaminants inside made it difficult to breathe.
An emergency slide falls off a Delta Air Lines plane, forcing pilots to return to JFK in New York
An emergency slide fell off a Delta Air Lines jetliner shortly after takeoff Friday from New York, and pilots who felt a vibration in the plane circled back to land safely at JFK Airport.
B.C. seeks ban on public drug use, dialing back decriminalization
The B.C. NDP has asked the federal government to recriminalize public drug use, marking a major shift in the province's approach to addressing the deadly overdose crisis.
Sophie Gregoire Trudeau on navigating post-political life, co-parenting and freedom
Sophie Gregoire Trudeau says there is 'still so much love' between her and Prime Minister Justin Trudeau, as they navigate their post-separation relationship co-parenting their three children.
Decoy bear used to catch man who illegally killed a grizzly, B.C. conservation officers say
A man has been handed a lengthy hunting ban and fined thousands of dollars for illegally killing a grizzly bear, B.C. conservation officers say.
'I was scared': Ontario man's car repossessed after missing two repair loan payments
An Ontario man who took out a loan to pay for auto repairs said his car was repossessed after he missed two payments.
First court appearance for boy and girl charged in death of Halifax 16-year-old
A girl and a boy, both 14 years old, made their first appearance today in a Halifax courtroom, where they each face a second-degree murder charge in the stabbing death of a 16-year-old high school student.