'It helps to help': Organ donor's mom urges more families to say yes to donation

Nova Scotia used to be a provincial leader in organ donation, but in recent years it has fallen behind. Last year, there were only 16 organ donors, and 12 families declined consent. Now there are calls to change the system to identify more organ donors and create a culture where every family talks about donation.

After years of declining donations in N.S., there are calls for change and pleas for families to consent

Kelly Patterson didn't know whether her son wanted to be an organ donor, so she said yes for him. His organs helped five people. (Shelly Peters)

After doctors broke the news to Kelly Patterson that there was nothing left they could do to save her son, Steven, after he suffered massive head injuries in a car accident, they asked if she would donate his organs.

It was four in the morning on a September day, two years ago, and the Nova Scotia woman was numb, exhausted and overwhelmed.

But in that horrible moment, Patterson said yes — she'd already had several days to think about organ donation as Steven lay lifeless in a hospital bed.

It could've gone differently.

"If I had 10 minutes to think about it, or the approach was wrong, absolutely I would've backed off in a minute," Patterson said from the Berwick, N.S., home that's adorned with family photos and memorials to Steven.

"We're talking about my son, my baby."

Her decision meant his 26-year-old heart, kidneys, liver and pancreas were donated to five people waiting for an organ transplant. Pneumonia had set in while Steven was in hospital, so his lungs could not be used.

Just 16 organ donors in N.S. last year

But even though she's a strong supporter of organ donation, Patterson's decision to consent was still a struggle — and helps to explain why there's a national organ shortage.

Most Canadians say they support organ donation but only about 20 per cent register. And only a fraction of them actually become organ donors when they die.

The national rate of organ donation is 20.9 people per million. In 2016, 4,500 people were on an organ transplant list, but only 2,835 organs were transplanted. That year, 260 people died — five Canadians a week.

Nova Scotia used to have a strong track record in organ donation but has fallen behind, according to Dr. Stephen Beed, the medical director for the Nova Scotia organ and tissue donation program.

Dr. Stephen Beed is an intensive care physician and head of Nova Scotia's organ and tissue donation program. As Nova Scotia's only donation doctor, he supports ER doctors and cardiologists in identifying whether a patient is a candidate for organ donation. (Elizabeth Chiu/CBC)

There were only 16 organ donors last year, down from 26 in 2011. This year, however, is showing improvement with 20 donors as of Tuesday.

The news is urgent for 125 Nova Scotians who are on a list waiting for an organ transplant. So far this year, eight people have died waiting for the call that never came. 

So why is there such a critical organ shortage? 

Patients become organ donors in one of two ways: when their brain has died (neurological death) or when their heart has stopped (cardiocirculatory death).

They may include people who have suffered severe traumatic brain injuries, a brain aneurysm, a massive stroke or a heart attack, or someone who has drowned. In all cases, they are injuries the patient will not survive.

Missing a 'rare' opportunity

Beed said the biggest problem stems from the fact organ donors are overlooked in critical moments. Emergency room physicians and cardiologists often don't recognize the life they've tried to save could also be an organ donor, he said.

Without that on their radar, there's no referral to the organ donation team.

"These are rare opportunities, and missing a single one is a big deal," said Beed. 

Ontario, Quebec and British Columbia lead the country in organ donation rates and have programs that feature mandatory referral and hospital donation specialists to ensure donation opportunities are identified.

Beed also works at a hospital in Saskatchewan, which is trying to boost its organ donation rate. Based on the success of other provinces, he's advocating for a rebooted program in Nova Scotia that creates a network of intensive care physicians — acting as donation doctors — to support health professionals in regional hospitals provincewide.

He hopes Nova Scotia can return to its place as "the best or pretty near the best" donor province within five to 10 years.

If the province matched the highest organ donation rates in the world, it would have 40 to 50 donors annually, he said.

Families can overturn consent

Many organ donors suffer an unexpected death that leaves families making a life-saving decision after receiving devastating news. The conversation between families and the organ donation team can last hours, but once consent is given, work begins immediately to get the viable organ to a matching donor.

Patterson understands why some families say no.

"You're brought in the hospital, and told that your child or your mother or your father's not going to make it — that's all you can bear to hear," Patterson said.

Kelly Patterson's son Steven (left) died in 2016. She donated his organs and since his death, she and her eldest son, Ryan (right), have decided to become organ donors. (Submitted by Kelly Patterson)

"Who's thinking about what you can do for others? Who's thinking about organ donation?" 

Families have the final say whether to consent to donation, even in cases when a patient is registered as a donor. 

About 12 families decline donation each year in Nova Scotia.

Beed said the organ donation team's job is to "enable our families to make their best decision on their worst day." Consent helps them craft a legacy for their loved one that they'll carry forward, he said. 

Leaving a legacy behind

Nine years ago, Pat Popwell of Reserve Mines saw a need to start a support group for people in Cape Breton who need or have received a lung transplant. 

Pat Popwell is a retired nurse and started a lung transplant support group in Cape Breton. (Pat Popwell)

The retired nurse and a registered cardiopulmonary technologist thinks a donor's wishes should be honoured and not overturned by families whose emotions are running high.

"It's the worst time ever to make a decision because you want to hold on to them but you want to let them go."

Even family members of people who need a transplant can be stricken with fear, she said.

Popwell praises Patterson's decision to change lives through donation. She's watched group members struggle with the most basic thing in life: taking a deep breath. 

Consenting to donation is an act of grace, courage and selflessness, she said.

"I would love to have that legacy." 

A grateful recipient reflects

Patterson had never talked to Steven about organ donation. She didn't think there was a need — he was in his 20s, healthy, and strong. So she had to make the decision for him.

She now urges all her family and friends to have a conversation about organ donation so if tragedy strikes, more families will say yes without having to endure agonizing decision-making at a traumatic time.

Her decision still helps her cope with grief.

She's overcome with tears at a letter from one of Steven's organ recipients. The man received one of Steven's kidneys on his 53rd birthday — the day after Steven died.

"I am here today because they took the time to make a selfless decision to share their loss to help another grateful person," wrote the married father and grandfather.

Kelly Patterson treasures this letter from one of Steven's organ recipients who received a kidney. (Elizabeth Chiu/CBC)

Patterson finds some solace in that gratitude.

"Knowing that Steven saved the lives of five people, not only five people — five families, five wives or husbands, daughters, sons, grandchildren — that helps," she said. "It helps to help." 

Beed has worked many Christmases in Nova Scotia and he's noticed a trend. A potential organ donor typically emerges over the holiday season.

"It'll probably happen this year," he said ruefully. 

"We need to at least make sure if it happens, we give that family the chance to help someone through donation."

About the Author

Elizabeth Chiu

Reporter

Elizabeth Chiu is a reporter with CBC Nova Scotia and host of Atlantic Tonight on Saturdays at 7, 7:30 in Newfoundland. If you have a story idea for her, contact her at elizabeth.chiu@cbc.ca.

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