A pair of advocacy groups for those living with neurodegenerative diseases has issued a joint statement warning that the provincial government’s proposed changes to medical assistance in dying legislation could leave some of the province’s most vulnerable patients without meaningful end-of-life options.
Lana Tordoff, executive director of the Parkinson’s Association of Alberta, said the organization and the ALS Society of Alberta are urging the government to reconsider measures that could limit access for those with chronic, progressive neurological conditions.
The primary concern is the government’s plan to restrict eligibility to people whose natural death is reasonably foreseeable while eliminating what is legally known as “Track 2” MAID, where death is not imminent.
“These diseases don’t follow a straight line,” Tordoff said. “It’s very difficult to predict terminal status, but that doesn’t mean the suffering isn’t real or significant.”
Tordoff said one concern is ensuring people with conditions such as Parkinson’s disease and ALS can still access medical assistance in dying, commonly known as MAID, even when the course of their illness is uncertain. She said chronic pain, loss of independence and declining quality of life should be considered alongside whether or not a patient is deemed terminal.
Another issue is the ability to make advance requests. Tordoff said many neurological diseases can lead to cognitive decline or dementia, potentially leaving patients unable to provide consent later in the progression of their illness.
“There’s an opportunity to make decisions today that reflect your wishes in the future,” Tordoff said. “Families and caregivers need that clarity.”
She said decisions to pursue MAID are typically not made lightly or impulsively and if medical professionals are restricted from raising the topic, patients may not fully understand the range of options available to them.
“Without that information, people can’t make informed decisions about their care or their future,” Tordoff said. “There’s a rigorous screening process, and many people are declined if they don’t meet the criteria.”
Tordoff said while some may argue that choosing MAID could mean giving up the possibility of future treatments or cures, for many neurological conditions, including Parkinson’s and ALS, there is currently no cure.
Beyond medical considerations, Tordoff pointed to the financial burden faced by many patients and their families. Costs for medications, home care and specialized equipment are often only partially covered, if at all.
While she stressed financial strain should not drive end-of-life decisions, she acknowledged it is a reality many families must navigate.
If the proposed changes move forward, Tordoff warned of unintended consequences, including patients seeking care outside the province or refusing life-sustaining treatments.
“People may feel forced to leave their communities or make difficult choices earlier than they otherwise would,” she said.
Advocacy groups, including the Parkinson’s Association of Alberta and the ALS Society of Alberta, are calling for more consultation with medical professionals and community organizations before any legislation is finalized.
“There’s more to understand about the lived experience of these diseases, and that perspective needs to be part of the decision-making process,” Tordoff said.
The United Conservative Party government introduced the proposed changes in mid-March, saying they are intended to further restrict access to MAID and reinforce its use only in limited circumstances. Officials said the changes are meant to safeguard vulnerable people and emphasize that assisted dying should be considered only after other supports have been explored.
The government said the Safeguards for Last Resort Termination of Life Act is designed to underline that assisted death should not take the place of appropriate care, treatment or social supports.
When the legislation was tabled, Premier Danielle Smith said it was intended to restore clear limits and strengthen protections.
“This legislation strengthens safeguards and restores clear limits on eligibility to protect vulnerable Albertans facing mental illness or living with disabilities,” Smith said. “Those struggling with severe mental health challenges need treatment, compassion and support, not a path to end their life at what may be their lowest moment.”
The province said that while the federal Criminal Code sets the legal framework for MAID, provinces are responsible for delivering health care services, including end-of-life care.
Alberta’s government said it consulted with health professionals, academics and advocacy groups in 2024, along with conducting a public survey, before drafting the legislation.
The provincial government has also said it will continue working with stakeholders to ensure MAID is “carefully regulated, compassionate and protects vulnerable Albertans”.
Tordoff added that the organization is eager to work with the government.
