Alberta’s plan to curb access to MAID worries ALS, Parkinson’s advocates

Jessie Ravnsborg chose to end her life when she was only 36 years old.

The Calgary woman didn’t want to die — but an aggressive, incurable disease made it impossible to continue living.

“The only control she had was when she was full,” said her mother, Heather Lucier.

Ravnsborg had a promising future before he fell ill. She had just received her master’s degree and went to Sierra Leone on a volunteer vacation when she began to develop weakness.

“She thought it was her hip flexors,” Lucier said. “Basically, I picked her up at the Calgary airport and took her straight to the emergency department at Foothills (Hospital) and nine days later, she was diagnosed with ALS.”

ALS, or amyotrophic lateral sclerosis, is a neurodegenerative disease that destroys motor neurons in the brain and spinal cord, causing voluntary muscle control to fail – but leaving the mind intact.

Patients become trapped prisoners in a closing body. There is no cure.

Ravnsborg was diagnosed in March 2018. She was 35 years old.

“Within four months, she wasn’t walking. Her diaphragm was weakening and she really didn’t think she was going to make it to Christmas 2018.”

But Ravnsborg knew her rights and what she wanted.

She had worked in the intensive care unit at Rocky View Hospital, her mother’s entire career was in health care, and she had sat at her stepfather’s bedside while he was kept alive on a ventilator leading to his death.

Ravnsborg did not want such an ending. Within hours of her devastating diagnosis, she had a sobering conversation with her mother.

“Quality of life for me is a meaningful engagement with people,” Lucier said, recalling that conversation from eight years ago.

“I’m not going to go on a ventilator. I’m not going to die. And I’ll likely use medical assistance in dying when I see fit,” her daughter said.

The Calgary mother was left feeling a “paradox of pride and devastation” but supported her daughter’s wish.

“Devastated and yet so proud that she would know what quality of life meant to her and could articulate it succinctly — that she knew what her plan would be.”

Throughout her journey with ALS, her mother said Ravnsborg was determined to live life to the fullest and connect with those she loved.

“When you know what your choice is, the focus shifts from ‘how am I going to die?’ for ‘how do I want to live?’ And that’s so important when an illness is taking over everything — except your attitude.”

Each ALS patient’s timeline is different: some decline over many years, but for others, the disease claims their bodies in just months.

This uncertain timeline has now prompted the Parkinson Society of Alberta and the ALS Society of Alberta to speak out about the province’s proposed changes to MAID.

Bill 18, introduced last month, would drastically limit who is eligible for medical assistance in dying, limiting MAID to those who may die of natural causes within a year.

The organizations fear that the proposed legislation could inadvertently harm people living with progressive neurological disease by limiting MAID eligibility based on the predictability of death rather than the severity of suffering.

“ALS is not a straight and predictable path … we really think policy needs to reflect that,” said Leslie Ring Adams, executive director of the ALS Society of Alberta.

“Someone living with ALS begins to grieve the moment they receive the diagnosis — it’s a significant amount of loss, one after another,” said Ring Adams.

“They may feel like they have no other control over any other aspect of this disease, but that’s such an important thing.”

There are also concerns about Alberta limiting advance care planning options for people who may later lose decision-making capacity.

“For our community, the ability to plan ahead isn’t optional—it’s critical.”

Alberta’s bill essentially aims to revert to the way Canada’s MAID program began in 2016 and remove the expanded eligibility granted in 2021, which allows those suffering from a serious illness or disability that is not considered terminal and who are in an advanced state of irreversible decline to use MAID.

The Alberta government said it aims to ensure MAID is not used in lieu of care or support for mental illness or disability.

The new rules will also prohibit doctors from initiating conversations about MAID with a patient or referring them to receive MAID outside of Alberta. There will also be new professional sanctions for doctors and nurses who break the rules.

Lucier believes this is denying people their right to informed consent.

“I believe patients should know all the options that are on the table. To make the best decision for themselves. And that decision should be between the patient and their care team,” Lucier said.

“I don’t believe the government should be making decisions about health care options that are nationally legal and have such strong guidelines.”

The ALS Society of Alberta said patients being able to have open conversations with health care professionals is critical.

“When someone is trying to navigate their choices, they should be able to go to trusted and respected professionals who can give them clear advice and suggestions about their options,” Ring Adams said.

“We support safeguards, but they must be balanced with respect and personal autonomy.”

Watching your child die quickly is a parent’s worst nightmare, and Lucier said the idea that future ALS patients potentially won’t have the same option her daughter had is anxiety-inducing.

“The only relief I had was that I knew when she said enough — that she could say, ‘I’m ready for MAID.'”

Ravnsborg died on November 2, 2019 – 20 months after her diagnosis.

As with the Ottawa rules, Alberta’s bill would ban requests made by patients in advance.

This includes people recently diagnosed with diseases such as dementia or Alzheimer’s who may want to give their consent to MAID before they lose decision-making capacity. (Quebec currently allows these requests.)

Lucier questions Alberta’s intentions to drastically reduce MAID access.

“I know in this proposed Bill 18 they think they’re putting in some safeguards — but as I look at those safeguards, they’re already in our law.

“So I have concerns about transparency.”

A request for an interview with Justice Minister Mickey Amery was ignored and he was not made available to answer questions before the legislature’s question period on Tuesday.

Instead, the ministry sent a statement. The province did not address the specific concerns of people with Parkinson’s or ALS, but instead responded to a portion of their letter that mentioned dementia and advanced requirements.

“Prior requests raise significant ethical, legal and practical concerns, which is why the Last Place End of Life Safeguards Act will ensure they remain prohibited in Alberta,” Amery said in a statement.

“Under current federal law, prior requests for MAID are prohibited, and the Penal Code requires that a person have the capacity to give express consent to receive MAID immediately before it is administered.”

Alberta Health Services says 1,242 people died through MAID in the province last year, although the statistics don’t break them down by eligibility factors.

The government says deaths in Alberta under Ottawa’s expanded eligibility rules increased by 136 percent between 2021 and 2025.