Maggie Lanctot describes her daughter Stephanie's last few months of life as "a nightmare of pain that no parent should ever have to witness."
Stephanie Lanctot died at the age of 25 on Nov. 27, 2010 in Ottawa from stage four cervical cancer.
"Her pain was just unbearable — I mean her screaming — at one point they were draining the tumour and I could just hear her screaming through the doors of the operating room. One tumour became an open wound just eating away at her. She'd be screaming every hour … Mom, Mom help me," said Maggie Lanctot.
Lanctot's medical team at Elizabeth Bruyère Continuing Care in Ottawa had exhausted all pain medications trying to control the excruciating pain caused by the four tumours growing in her abdomen, but nothing worked.
Lanctot's medical team approached her with what they described as a "last resort" option.
It's a treatment called palliative sedation that is fraught with controversy among doctors both here in Canada and around the world.
Two weeks before her death, Stephanie agreed to be fully sedated to the point of unconsciousness because the pain was too intense.
So she was given midazolam, a benzodiazapene used as a sedative before anesthesia is administered for surgery.
Clinical therapy or euthanasia?
Dr. Jose Pereira, the medical chief of palliative care at the Ottawa Hospital and Bruyère Continuing Care in Ottawa, has used palliative sedation and said it is an important and useful option that is only used when symptoms such as pain, breathlessness or delirium are intolerable.
Pereira added the symptoms must also be refractory, meaning all other drugs that have been tried have failed to control the symptoms.
How often is palliative sedation used?
Bruyère hospital conducted an audit in 2008 looking back several years on how often palliative sedation was used. It examined patient charts and found that it was used on 16 per cent of dying patients with intractable, refractory suffering at the end of life.
Across Canada other hospitals have done audits like at Elizabeth Bruyère and it's been found that palliative sedation is used anywhere from four to 20 per cent of dying patients.
Despite being used at hospitals like Bruyère Continuing Care, the treatment is seen by some health experts as blurring the lines between a sound clinical therapy and euthanasia.
Dr. Marcel Boisvert, a retired palliative care doctor who worked at the Royal Victoria Hospital in Montreal, has used palliative sedation with a number of patients.
Boisvert said doctors can't say with 100-per-cent certainty that palliative sedation can't, in even a small way, hasten death because often artificial hydration and liquids are withdrawn from the patient when the sedation is given.
"You say you don't want to hasten a patient's death but if it lasts more than a week without hydration and nutrition but experts like nephrologists say beyond seven days [without] one drop of liquid probably adds a bit to the dying process," said Boisvert.
Debate over whether treatment hastens death
"So there's no surprise that the expression in quotation marks 'slow euthanasia' came about"
Pereira disagrees that withdrawing intravenous hydration can hasten death.
"Towards the end of life it's a natural phenomenon that you reach a point where you're not eating or drinking anymore and if you're starting palliative sedation it really is a moot point. There may be some who want to make the argument that palliative sedation is euthanasia and it's not, its absolutely not," said Pereira.
Pereira said international studies in both Italy and Japan back that up.
"Now there's emerging evidence to challenge those who say that palliative sedation invariably shortens life … it doesn't …now can we say with 100 percent certainty that it never shortens life? No."
Maggie Lanctot said her daughter chose deep, continuous palliative sedation because she couldn't bear being awake any longer with the pain.
In addition doctors had exhausted all treatments. She was going to die within a few weeks and doctors said there was nothing more that they could do for Stephanie.
Lanctot said Stephanie had a hard time convincing her sisters and father of her decision but she knew it was for the best.
'We just had to make her comfortable'
"It's a hard decision to make but when you see your own daughter and the cancer eating away at her … we just had to make her comfortable," said Lanctot.
Dr. Eugene Bereza is the interim director of the Centre for Applied Ethics at the McGill University Health centre in Montreal.
He's been called to the bedside as part of a palliative care team trying to decide whether to give palliative sedation.
Bereza said the moral quandary around palliative sedation will always focus on the intent of the medical team using it and he says hospitals should have guidelines, but not every case fits neatly into a set of rules.
"It's clear to me at least that the majority of people there know that at some level what we're really saying is this person's life ought not to continue because the suffering is so unbearable. They are frankly off better dead than alive. It's a very primitive way of articulating it but that's the sentiment."
Medical grey zone for doctors
"So now let's think of how we can do that most humanely but not break any laws. All I'm saying is the human condition is complex — we fall between the cracks when you're in that grey zone … it's never that crystal clear," said Bereza.
Maggie Lanctot felt that murkiness Dr. Bereza talks about. She said Stephanie looked very peaceful after she received the deep palliative sedation but she always wondered if that treatment may have ended her life prematurely.
"You just figure if you do that you're bringing it on even sooner but you know you listen to the doctors and they know best but for a week and and a half she didn't wake up but we still did talk to her."
"To be honest you kind of feel like you're giving up and letting them go and even though to see her suffer was unbearable you kind of feel like you're killing them," said Lanctot.