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.”

Misinformation about organ donation driving donors away

Source : www.freemalaysiatoday.com

Cultural taboos, gory images and videos on the Internet are among the hurdles in getting Malaysians to donate their organs, says National Transplant Resource Centre chief.

KUALA LUMPUR: Misinformation and misconception about organ donation are scaring away potential donors, says National Transplant Resource Centre (NTRC) head Dr Lela Yasmin Mansor.

This is often the result of cultural taboos and fear of what happens after death, she told FMT.

“Mortality is frightening, so people don’t want to know about it.

“Fear gives rise to ignorance, and ignorance gives rise to fear. We are trying very hard to break that,” she said, adding that people refuse to accept facts given to them when they fear something.

“In the end, people do not pledge their organs even though they know that their religions allow it.” According to her, gory images and videos available on the Internet only worsen the problem.

Lela also condemned organ trafficking syndicates that prey on the weak, poor and vulnerable and said a new Act aimed at tackling the illegal trade was currently in the works.

Lela added that Malaysia was also a signatory to the Istanbul Declaration, which among others, aims to eradicate commercial organ transplants.

“We report every transplant done here and we also have a national transplant registry. Other countries and international bodies are monitoring us.”

She also said the media could play a role in “educating” the people about organ donation, and help fight public distrust about it.

Malaysians can pledge their organs by registering at the NTRC website, or alternatively, by going to public hospitals.

Related stories: National organ pledges double in five years

6 months after double-lung transplant, man runs 5K to inspire organ donation

Original post : Today.com

Exactly six months after undergoing a double lung transplant, Eamonn Kelly did what many with cystic fibrosis only dream about — he completed a 5K race.

"I just thought 'oh I had a transplant and I could do that,'" he told TODAY. "Then I realized it was a pretty big deal."

For four years, Eamonn Kelly, who has cystic fibrosis, depended
on oxygen 24/7. He could only do exercises where he could have his oxygen tank.

The idea to run a 5K came to Kelly as he recovered in the hospital; he wanted to do something to celebrate his new lungs. The 32-year-old science teacher ran in high school and college before his cystic fibrosis worsened, tethering him to an oxygen tank. He picked the Boston College Race to Educate 5K, which benefits his school, Saint Columbkille Partnership School, and that's when his wife, Elana Alfred, noticed something interesting. The April 30 date was exactly six months after his transplant.

"[When I] saw the significance of the date I wanted to do it," he said.

Six months after receiving a double lung transplant, Eamonn Kelly
ran a 5K, something he was unable to do for seven years before the transplant.

At birth, Kelly was diagnosed with cystic fibrosis, a rare genetic degenerative disease, which causes the mucous in the lungs, pancreas, and other organs to thicken and collect. This mucous build up in the lungs often leads to clogged airways and trapped bacteria, causing infections, which contribute to lung damage and eventual respiratory failure.

While treatments have extended the lives of people with cystic fibrosis, the average lifespan of a person who lives to adulthood with cystic fibrosis is 37. More than 33,000 people in the United States live with cystic fibrosis.

For four years, Kelly depended on oxygen to breath, seriously limiting his activities. He mostly walked and rode a stationary bike.

But he felt determined that life after surgery would be more active. As soon as he could, he started building up his strength. The day after his surgery he took about 40 steps. In the following days, he took more and more steps until he was walking around the hospital floor.

After leaving the hospital and starting rehab, he walked on the treadmill at a three miles per hour pace. After a week and a half, he tried running.

Thanks to a double lung transplant, Eamonn Kelly can join his
wife, Elana Alfred, on long hikes and not worry about lugging an oxygen tank.

"I churned up the speed for 10 miles per hour and I lasted for 10 seconds," he said. "That was way too hard."

His therapists suggested another approach — run for 15 seconds at a time, walk, then do another 15-second run. This built up his lung capacity and strength. Nearly a month after rehab, Kelly could run a quarter of a mile without stopping.

"It was so exciting to go from sort of measuring things in little second and minute increments to 'okay this is an actual distance,'" he elaborated.

Despite making steady progress, Kelly couldn't run three miles on the treadmill until a month before the race.

"Suddenly everything clicked and I was able to progress much faster," he said.

On race day, Kelly felt confident and finished the race in 38 minutes and 33 seconds, slightly longer than his personal record of 38 minutes.

Eamonn Kelly with wife, Elana Alfred, before Kelly received a
double-lung transplant to replace his lungs damaged by cystic fibrosis.

While doctors remain unsure as to how long the new lungs will extend Kelly's life, he's taking advantage of them. He and his wife hope to travel; Iceland and Japan are on their short list. They also want to buy a house and start a family. While running the race was a personal goal, Kelly hopes his 5K encourages others.

"I really want to inspire people to think about organ donation," he explained. "They would have the chance to give someone the same opportunity."

People interested in learning more about organ donation or signing up for it can do so here.

Original post : Today.com

Old Toys Get New Parts to Teach Kids About Organ Donation

Visit original post here

A torn arm or a missing ear is the sign of a well-loved stuffed animal. But for kids looking to extend their toys' lives even longer, a company in Japan is performing toy transplants using parts from donated plushies, Rocket News 24 reports. The best part is that it aims to teach kids about organ transplants at the same time.

It's estimated that just 10 percent of the global need for organ donation is being met. In Japan, where only 300 out of 14,000 people on a waiting list will receive a transplant, things look even more dismal than they do in most developed countries. Japanese children waiting for a donation face their own list of challenges to overcome.

In an effort to spark conversation around this important topic, the company Second Life Toys is inviting kids to send them their beaten-up stuffed animals. Toys in need of fixing are matched with a donor, and the donated toy's part is then transplanted to the recipient, making them look even better than they did before. You can check out some examples of the reborn creations below, and if you'd like to donate an old toy of your own you can visit their website.