Montreal program helping patients with terminal neurological diseases

A team at the Montreal Neurological Institute-Hospital – The Neuro – has been helping patients suffering from terminal neurological diseases.

The Susan Cameron Cook Neuro-Palliative Care Program has been helping ease these patients mental and physical suffering throughout their illness and in their final days.

“We’ll try to go and really think outside of the box,” said Justine Gauthier, Nurse Clinician at the Neuro. “Not just about the medical, the nursing, or the psychological parts of it.”

“There was a lot of will from the community here at the Neuro after the Royal Vic moved to the Glen site,” explained Gauthier. “We didn’t have an onsite consult service for palliative care anymore, so we decided to build one that was adapted to the needs of our patients here.”

And they did just that.  

Founded in 2017 by Gauthier and Neurosurgeon Dr. Jeffery Alan Hall, the program aids through specialized consultation and comprehensive care.

“I think that we can help our patients actually throughout their illness,” said Gauthier. “A lot of people think that palliative care is only about end of life care and the terminal phase of illness.”

“But the way we see our clinic and our program here,” she added. “Is not at all just about the end of life phase.”

“I think we can help patients for a long time.”

They do this by ensuring patients receive the care that they want in the setting that they want.

If they choose to be at home, the program partners with the care network in the community.

“Many patients with neurologic illnesses and neurosurgical illnesses have a very long trajectory that can be difficult,” said Dr. Hall who is also the Director of the Neuro-Palliative Care at the Neuro.

“Many neurological illnesses have life-threatening elements to them,” he added. “This program is meant to ensure that we try to maximize quality of care for patients suffering from these illnesses.”

The care provided also includes them discovering what’s important to the patients like:

• Eating certain foods
• Ensuring the people they want are around, and accommodating those loved ones with a place to sleep and eat at the Neuro
• And some even wish to have their beloved pet by their side

They claim over 800 patients have benefitted from the program — like those with brain tumors, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), and progressive multiple sclerosis.

It has also inspired some interested in Neurosurgery – like Neevya Balasubramaniam and Franciska Otaner, McGill University medical students who organized a fundraiser for the program in November.

“We organized a hike at the Mount Royal and we invited medical students, staff at the Neuro, we invited nurses,” said Balasubramaniam. “We reached out to multiple organizations throughout Canada to help us promote this event.”

“Sometimes it’s not always about treating the disease, especially when the disease is incurable,” added Otaner. “Sometimes it’s just about bringing comfort and care to the patient, making them feel better.”

To ensure that the program keeps helping, the team also conducts research – hoping to expand the neuro-palliative care field. 

“Where they’re at in their illness trajectory,” said Gauthier. “We make sure that they know that we’re there for them.”

“And I think that’s what really makes a difference.”