Ontario mom mourning her daughter shocked to find she could overrule her wish to donate organs

An Ontario mother who lost her daughter in a car accident over a week ago is seeking changes to this province's organ donation rules. She says she was asked if she wished to reverse her daughter's registration as a donor while in hospital.

Christine Milligan believes she should not have had the option to reverse her daughter's wishes.

Christine Milligan, left, is pictured with her daughter, Cassidey Ouellette, who died in a car accident on August 4. Milligan was shocked when staff at hospital asked if she wanted to reverse Cassidey's decision to be an organ donor. (Supplied)

Christine Milligan knew her daughter's wishes.

So when she was asked if she wanted to "revoke" her daughter's right to organ donation, she was taken aback.

"I think that was the worst question, in that time, that Cassidey's dad and I were asked," Milligan said in an interview with CBC Ontario Morning's Wei Chen. "We really weren't even thinking or functioning to even make a decision like that," she said.

"She already made the decision when she was 16 and started driving."

Cassidey Ouellete, Milligan's daughter, died last week in a car accident near Peterborough. She was pronounced brain dead in hospital. It was the day before her 20th birthday.

The Warkworth, Ont. family was at her bedside when they were asked whether they would like to go forward with donating Ouellete's organs. The daughter had signed her organ donation card when she received her licence at 16, so the answer was obvious to Milligan.

"I thought, 'Why would we not support a decision that she made?' We supported her her whole life—whatever she wanted to do," Milligan said.

But the question did come as a surprise. Milligan assumed that once a donor card was signed, it was non-negotiable.

"This was just a given for us, but it would've been so easy to say 'no' because we would be selfish and keep her that way."

Uncommon experience

Ontario's Trillium Gift of Life Network, the agency that oversees organ donations in this province, says it's uncommon for a family to overrule a loved one's wishes.

Ronnie Gavsie, president and CEO of the Trillium Gift of Life Network, says the province gives families the option to prevent organ donations if their loved ones have expressed regret. (Trillium Gift of Life Network)

The option remains, according to CEO Ronnie Gavsie, in the event that someone expresses regret about their donation status before they die.

"A person might register at a certain point in their life and then tell their family—based on a re-think of their decision—that they do not wish to be donors," Gavsie said.

"That can happen and the [Trillium Gift of Life Network] Act respects that that can happen."

In 2016, families overturned their loved ones' decisions in about 10 per cent of cases. That's down from 21 per cent in 2015.

Typically it occurs in exceptional circumstances, such as when a patient has profound brain damage and a family must choose to end life support. Gavsie says in situations like this, family members may have been with their relative in hospital for days.

"They are exhausted, they are drained," Gavsie said. "When the decision is made with the medical team to withdraw life support, [the family] wants to do it immediately."  

The challenge is that surgeons and healthcare professionals must begin removing the viable organs before life support stops, prolonging the experience.

"We now work very hard to try to help the family give us more time."

Support workers with Trillium encourage family members to leave the hospital for some rest and assist with the start of funeral arrangements in hopes of encouraging more donations.

Reviving private member's bill

To avoid confusion at the end of life, Trillium encourages people to share their wishes with family members. That way crucial decisions like organ donation can be made more easily in a time when emotions are high.

Milligan says that's not enough. Her brother, former Progressive Conservative MPP Robert Milligan, had introduced a private member's bill in 2012 to update organ donation rules. It was left in limbo when then-premier Dalton McGuinty prorogued the Ontario legislature.

That bill proposed two changes. The first would ensure that only donors can revoke their registration. The second would see all Ontario residents automatically registered as organ donors—also known as presumed consent—with the ability to opt out on personal or religious grounds.

"There's a lot of people who will say, 'Yeah, I would donate my organs,' but they never fill out the card," Milligan said.

Gavsie is skeptical. A 2015 Ipsos poll found that two-thirds of Ontarians believe that the organ donation system should be opt-in.

"They believe that donation is a gift—a personal choice—and accordingly would feel they were being forced to make a decision," Gavsie said.

Gavsie cited the agency's own research, which found no justification for presumed consent.

"We have been able to find no evidence, in any jurisdiction anywhere in the world, where presumed consent has been the factor to increasing the number of donors."

But Milligan remains committed to what she calls her new "mission" in life. She hopes that one day updated legislation will bear her daughter's name.

"I feel like now I'm on a mission to have that bill re-introduced and I'd like it to be Cassidey's bill."

With files from Ontario Morning