Mourning families increasingly blocking organ donations of loved ones

Requiring consent of the family proves an obstacle to helping Ontarians on waiting list for a transplant.

Original post here : www.thestar.com

Colin Arnott gladly reaffirmed the organ donation consent of his brother Ken, who 
died following a massive stroke in 2013. In his hands is a photo of the brothers in one 
of their last races together.   (STEVE RUSSELL / TORONTO STAR)

Grieving families are blocking the organ donations of one in five Ontarians who registered to donate before they died, the Star has learned.

Data obtained by the Star from the Trillium Gift of Life Network reveals how often opportunities for potentially life-saving transplants are lost because of family objections — a number that has steadily risen over the past three years.

Whitby’s Colin Arnott said he was “surprised” when asked by Trillium representatives to “reaffirm” the consent of his brother, a registered donor who died following a stroke in 2013.

“They told us Ken had signed his donor card — I didn’t know he had — and asked us if it was true those were his wishes,” he said. “I was surprised why they were asking us to affirm his decision if he already filled out the forms and signed his donor card.”

Like the majority of families, Arnott gave the go-ahead for his relative’s donation to move forward. Yet provincial data shows the number of cases where families step in to quash a loved one’s donation is rising.

In 2013, the province’s organ and transplant registrar recorded 14.5 per cent of families (representing 26 registered donors) who refused consent, a number that climbed to 21.1 per cent (62 donors) last year.

Given that one donor can save eight lives, the would-be donors could have meant a lot of good news for 1,524 people in need of an organ transplant on Ontario’s wait list. Experts say the refusals could prove fatal to those left waiting for a donor.

“If you have someone willing to donate and their family overrides it, there are consequences where people on waiting lists may die as a result,” said Jennifer Chandler, the University of Ottawa’s Bertram Loeb Chair in Organ and Tissue Donation. “At the same time, a bereaved family’s psychological needs have to be taken into consideration as well.”

According to Chandler, the divisive topic isn’t “a legal problem but a human one.” Various cultures interpret donation “as a question that is owned by the family rather than the individual,” she said.

Under the current system, anyone 16 or older can register online, by mail or in person at ServiceOntario kiosks to consent to donate their organs — hearts, lungs and livers — and/or tissues, such as skin, bones, heart valves and eyes.

But whether a donor’s wishes are honoured is another question.

The province’s Trillium Gift of Life Act does not specifically require family to reaffirm a registered donor’s consent. However, because the act calls for donations to be cancelled if there is “reason to believe that (consent) was subsequently withdrawn,” Trillium’s practice is to ask relatives if their loved one might have changed his or her mind.

“We will not go through with donation against the wishes of the family,” said a Trillium spokesperson in an email to the Star.

Trillium president Ronnie Gavsie also said a family’s consent is critical for moving the donation process forward.

The refusal statistics illustrate the importance of donors asking their next of kin to respect their wishes after they’re gone. “This is about sharing life, not giving something away,” she said.

Three years ago, Arnott’s younger brother Ken — a hard-working father of two who “never drank or smoked a day in his life” — was cycling with friends on a Friday morning when he began to feel numb and his speech became slurred. The symptoms were warning signs of a massive stroke. The 50-year-old was rushed to an Oshawa hospital, where he died four days later.

“The doctors tried clot-busting drugs, other early intervention methods, but Ken wasn’t getting out of it,” Arnott said. Following his death, Ken’s organs went on to save the lives of seven others; he was also an eye donor.

“Ken improved lives, he saved lives,” said Arnott from his Whitby home. “A big part of this is that he lives on somewhere else.”

Knowing he was carrying out his brother’s final wishes was comforting to Arnott, who has since become an advocate for organ and tissue donation. Still, he found it concerning that relatives have the power to overrule a donor’s consent, a move he compared to “nullifying a contract.”

“If you sign the donor card, it should become some sort of legal document,” he argued.

James Breckenridge, president of the Canadian Transplant Society, argues that asking members of a grief-stricken family to reaffirm consent is “poor timing.” It places them in an “awkward situation” where making such decisions is difficult.

He fears that the result is allowing life-saving organ donations to go unused.

“The last thing a family wants to do is think about something other than their lost loved one,” he said. “But it’s an awful thing when an organ donor is denied who had already gone out of the way to become a donor in the first place.

“Their organs will be destroyed and not passed on to someone else who could have used them to live.”