The Chronicle Herald (Provincial)
Education lacking on opt-out law
Matthew Leblanc is only nine years old, but he's already had a kidney transplant and is waiting on the second one.
Matthew was born with kidney dysplasia, a condition where one or both of a baby's kidneys don't develop normally while in the womb. He spent the first six months of his life undergoing dialysis at the IWK Health Centre, and later at home.
“It was definitely a rocky road with lot of ups and downs. He was in and out of the hospital a lot,” said his mother, Tonia Leblanc, in an interview.
When he was 19 months old, his father could finally give him a kidney.
LIVING THROUGH UNCERTAINTY
Matthew has had episodes of rejection throughout the years. Rejection is when the body does not accept the new organ, attacking it as it would foreign invaders such as bacteria or viruses.
Over the last year, Tonia said his kidney function rapidly declined. Now Matthew is on the transplant waiting list again, along with about 200 people in Nova Scotia.
“Thankfully right now we are able to avoid (dialysis), but we're not sure how long that will last,” said Tonia.
Dialysis might require travelling to the IWK, which is difficult for the Cape Breton family.
Tonia said she hoped Matthew will get a call for a transplant before he requires dialysis. He's been on the list for two months.
“He's nine and he wants to be playing with his twin brother and doing fun activities,” she said.
Matthew is still going to school although he gets tired by the end of the day, but that could change any time, said Tonia.
Doctors did not give Tonia an estimate of when Matthew could be off the list, but it could go on for years. Even if they receive the call, Matthew might require more transplants in the future and the uncertainty that comes with long wait times makes the process more exhausting.
GRADUAL CHANGE
The family could see a glimmer of hope when Nova Scotia switched to an opt-out organ and tissue donation law about four months ago. The law presumes all adults consent to being donors unless they opt out of the program.
“We're hoping that sees our (donation) numbers go up and hopefully we'll be one of the best in Canada for organ donation,” she said.
“But I think it could take some time to get that rolling and see how it's going to impact us.”
Dr. Stephen Beed, medical director of Nova Scotia's organ and tissue donation program, said the program is seeing some changes under the updated Human Organ and Tissue Donation Act.
For one, health care providers are now required to contact the organ donation program if they have a patient who is close to death and meets certain clinical criteria to see if the patient could be an organ donor.
“We've seen a huge increase in the number of phone calls and referrals,” he said.
Physicians caring for these patients are often covering intensive care units or the emergency departments across the province.
There have also been more requests by hospitals such as the QEII to educate their staff, including physicians, about how organ donation works. Beed said he wasn't surprised at the large number of people who needed more information.
WIDE KNOWLEDGE GAPS
In Nova Scotia, organ donation from a deceased person is possible in only two circumstances: after brain death, also called neurological death, and after cardiocirculatory death. More information is available at www.nshealth.ca under the organ donation after death tab.
“The specific medical criteria that would qualify you as brain dead or neurologically dead is actually pretty complicated,” he said.
Until recently, specifics about organ donation and the declaration of brain death were not part of the curriculum at medical and nursing schools, nor were they always taught during medical residency. Things have been changing over the past five to 10 years, said Beed.
“But we have a whole generation of people out there who wouldn't have received much training on this topic at all,” he said.
Beed added that the knowledge gaps are more substantial and widespread than he thought they would be, which “screams that we need to continue our work in educating our health-care teams.”
The public also has a lot of questions about how the law affects them individually, but they're “overwhelmingly supportive” of the concept, said Beed.
The program has been working with vulnerable communities that have had low consent rates in the past, such as those living in rural communities, people who don't have a university education, and people of colour or visible minorities. After answering people's questions and addressing their concern, Beed said they often start supporting donation.
One misconception people have with the new law is that “people die every single day so there's potential organ donors every single day.” But that's not true, especially with the specific clinical criteria required for a someone to donate their organs after their death, said Beed.
“People who meet that criteria are actually quite uncommon,” he said. “If we miss even a single donor, that's kind of a big deal.”
It's also often overlooked that organ donation is not only important for the recipient, but also for the donor's grieving family.
“It gives them at least something positive in the middle of a tragedy. It helps frame the legacy of their loved one that they carry forward.”
As a mother whose boy is waiting for a kidney, Tonia said people shouldn't underestimate the effect organ donors have on people's lives.
“You never know when you are donating your organs who they're going to go to, no matter what, it's there to help somebody.”