Eleven-year-old Ava Walls had a dream that her grandma, Monica Goulet, walked out of an operating room in a beautiful, bedazzled dress from Hawaii. In the dream, Goulet was glowing. She had just received a new kidney.
Although the kidney is still a dream, the dress is not. Goulet has never had a chance to wear it because her intrusive dialysis regime enlarges her stomach, but it’s the first thing she plans to do if she gets a new kidney.
Meanwhile, she lives by the clock: Every few hours she hooks up a new bag of dialysis fluid to a catheter tube in her abdomen. Every month she edges closer to another year spent on the transplant waitlist. In February of next year, it will be three years.
Of all the provinces, Saskatchewan had the lowest organ donation rate from deceased donors in 2015.
The province is considering a shift to a presumed consent system and developing a new organ donation program.
But as Goulet's life hangs in the balance, hospitals are missing opportunities to take organs from willing donors.
The medical director for one of the most successful organ donation programs in Canada, Dr. Stephen Beed, says the medical community in Saskatoon is not recovering organs from some deceased donors due to a lack of training and awareness.
According to the Saskatoon branch of the Saskatchewan Health Authority, an average of two people die waiting for a suitable kidney every year.
The public sometimes wears the blame for failing to register as donors. Although the province prides itself on generosity, medical workers say Saskatchewan does not have a “culture of donation.”
Beed said facilitating donations isn’t a big enough priority in the Saskatoon hospitals where he has been working as a locum for more than a year.
He believes it is largely due to a lack of training, saying organ donation wasn't part of most medical college courses until recently.
“If you have somebody who is a donor and a potential donor, and facilitating donation might mean that you have to adjust the operating room schedule or a surgeon has to cancel something to make themselves available or whatever, that is not what I have seen here,” said Beed.
“In fact, I’ve seen the opposite, I’ve been witness to several examples where an opportunity was lost simply because of that kind of thing.”
Beed doesn't believe medical workers are adverse to adopting a better system, but said it is yet to happen in an organized way.
Tough talk, but necessary
Most people have seen it play out countless times in TV versions of hospital hallways and waiting rooms: that chaotic, unreal moment when a family finds out they are about to lose someone they love.
In real life, there’s only a narrow window of time between the trauma of learning that truth and raising the issue of organ donation.
In Saskatoon, critical care doctors like Mark James and Stephen Beed are sometimes tasked with initiating those conversations.
James, who is part of a national organ donation committee for Canadian Blood Services, said offering donation is a crucial part of good end-of-life care.
“It’s just another means by which we can, I guess, help donor families come to terms with their loss on the one hand, and meet the goals of care for their loved ones,” said James.
“And then in the bigger picture, the benefit to the family is huge.
“It extends to the recipient families, and if you were to be quite callous about it, there is a significant financial saving ... in terms of getting people off waitlists, off dialysis.”
Beed added that he has seen families who support donation become angry when they learn that their loved one could have been a donor, but wasn't offered the chance.
"Generally speaking, a family that is supportive of donation are very upset that this opportunity came and went," he said.
"They're under a lot of stress in the setting of the illness of their loved one and it's easy for things to get missed or for them to get overwhelmed, so the healthcare team need to be responsible for bringing this issue to the families."
In the span of a year, Monica Goulet will spend about 160 hours doing dialysis. Her granddaughter Ava knows the routine.
Step one: Attach the catheter tube to an empty bag so the liquid inside Goulet’s abdomen can drain out.
Step two: Attach a fresh bag of fluid to drain into the abdomen. The process uses a membrane inside the peritoneal cavity to remove toxins, a job that would usually be carried out by the kidneys.
Goulet’s failing kidney is the only one she has. She was born with a genetic defect that wasn’t diagnosed until she was about 26 but by then, her right kidney was so damaged by repeated infections that it had to be removed.
In February 2015, on the verge of her 60th birthday, Goulet found out she had stage four kidney failure in her remaining kidney. By 2016 she was told she would need to start dialysis to stay alive while she waits for a kidney transplant.
Since she started dialysis last year, Goulet has started speaking publicly about her experience to raise awareness about donation, and to confront the public with the reality of life on the transplant waitlist.
At an organ donation awareness event in May, Goulet held up the bag of dialysis solution to the crowd.
"I wanted to show you what I carry in my body every day," she told the crowd at the event.
It’s one way she can try to improve the province’s poor results when it comes to organ donation and encourage people to talk to their families about their wishes.
But she believes the best way to get more donations is to make them mandatory with an opt-out system of presumed consent.
“Right now people can choose to be a donor. I would love to see legislation where people have to become a donor when they are passing,” said Goulet.
“If they choose not to, if they have cultural or religious reasons or spiritual beliefs, whatever, then they can choose to opt out, but otherwise it should be mandatory.”
Her son and her sister both volunteered to donate their kidneys but neither was a suitable match.
She’s hopeful that two recent volunteers will prove to be a match but, if not, she will have to wait for a deceased donor. She was told in 2015 that could take three to five years.
Why so low?
Doctors Mark James and Stephen Beed both work in Saskatoon hospitals managed by the Saskatchewan Health Authority, which also runs the provincial Saskatchewan Transplant Program out of St. Paul’s Hospital.
James said there is no way to prove why organ donation rates in Saskatchewan are so low because nobody has ever had the resources to study it.
It’s believed that geography plays a role, with so many small, rural and far-flung communities that don’t have easy access to city hospitals. There’s also the issue of not having a “culture of donation,” something the transplant program attributes to a lack of public education and awareness.
Unlike some other provinces, there is no donor registry in Saskatchewan. Alberta, Ontario and Prince Edward Island have implemented "intent-to-donate" registries where residents can make their wishes known formally.
According to Canadian Blood Services, the number of registrations overall is relatively low, but it says health-care staff and physicians say "registry information can inform discussions with family members and bring families some relief and comfort when loved ones' wishes are known."
Saskatchewan citizens can sign up for a donor sticker to put on their health-care card, but even with the sticker the person’s family or next-of-kin can still veto the donation after they die.
Intent to donate not always enough
Stephen Beed said even those who are ready to donate do not always get the opportunity to do so because their cases slip through gaps in the system.
A Dalhousie University critical care professor with a special interest in organ donation, Beed was involved with the development of the organ donation program in Nova Scotia about 13 years ago.
In 2016, N.S. had the highest organ donation rate in the country. He said Saskatchewan is facing challenges now that N.S. was grappling with more than a decade ago.
“Within the health-care community there is a general lack of awareness about organ donation issues. It’s not on the radar screen of most of the medical community [in Saskatchewan],” said Beed.
He said there is an entire generation of medical workers whose education did not cover organ donation in any substantial way, because many schools only added it to courses in the past decade.
For that reason, Beed claims he has seen hospitals miss the chance to retrieve organs.
And chances are rare. In 2016, eight Saskatchewan residents received kidney transplants from a living donor. There were 14 deceased organ donors in the same year.
“I’ve been in the ICU where I’ve had potential donors and it’s like it doesn’t happen, and I go ‘Well, why? That was a huge opportunity lost,’” said Beed.
“So I’ve seen it firsthand here. I knew what the numbers were in Saskatchewan because of my national role. I knew Saskatchewan numbers were very bad, but having worked here I’ve seen how some of the challenges here have led to those bad numbers.”
Meanwhile there are more than 60 people waiting for a kidney transplant, which can be carried out in Saskatchewan. Other types of transplants are facilitated through the program but may require patients to travel to other provinces.
Beed said opportunities for organ donation should be treated with the same urgency as treating someone who was hit by a bus, for example.
“There’s just no way in the world that you’re not taking care of the patient. Doesn’t matter if you’re full, of course you’re taking care of them, and you do because it’s recognized as an absolute priority,” he said.
Sometimes, he said organ donation can be forgotten when emergency doctors are dealing with a catastrophic illness, a complex critical situation and a very distraught family.
He said emergency physicians — “gatekeepers” — need more education to stop possible donations slipping through the cracks.
“They’re the ones that are on the frontline and they see some poor guy that’s had a big stroke,” said Beed.
“They’re the ones that have to recognize, ‘Oh maybe I can’t do anything about a stroke but maybe he could be a donor - I should make a phonecall.’ But if they don’t remember or think about it then the opportunity comes and goes.”
Amy Pilon has never donated an organ, and she is not waiting for a transplant. But the 22-year-old from Prince Albert, Sask. says she is “one future of organ donation.”
When Pilon was seven, her grandfather Clarence Harris died waiting for a double-lung transplant after he was diagnosed with pulmonary fibrosis. About 10 years later her mom, Karen, was diagnosed with the same illness. She died in Edmonton waiting for a double-lung transplant in 2014.
Earlier that year, Pilon had been diagnosed with dyskeratosis congenita, a rare bone marrow syndrome that can lead to other diseases — including pulmonary fibrosis. Now her uncle has been diagnosed with it as well.
“I’m only 22 so it’s a very scary thing,” said Pilon.
“I want a family, I want to finish school, I want a career, I don’t know what’s going to come of those things.
“I don’t know when pulmonary fibrosis is going to come, if it is, but it’s something I try not to live my life scared of as much as it does scare me.”
Pilon and her father, Clarence Pilon, started the Karen Pilon Organ Donor Awareness Foundation in 2014.
She hopes that sharing her family’s story publicly will help dispel myths about organ donation.
Pilon also wants the province to introduce an opt-out system, but she said it needs to be accompanied by better education for the public.
She was shocked by the lack of awareness she saw online when the province announced it was considering a presumed consent model.
“Just reading through the comments was just so disheartening, and heartbreaking really, for me, and I think all of my family,” said Pilon.
“Because there are so many people that believe that 'If I’m an organ donor, doctors aren’t going to give me the same amount of care because they want my organs'.
“The amount of times that people were actually saying this astonished me because that just showed me the lack of knowledge and the lack of education that’s occurring around this topic.”
One of the hardest things for Pilon to reconcile about her mom’s death was that thousands of people died when her mom was waiting for a donation, and not a single match could be found.
Karen Pilon was sent to Edmonton to wait for her transplant, and her family were told it’s common have “dry runs,” where the organ arrives but is not usable for some reason. But it never arrived.
“We thought we had a good chance because we were told by doctors that we could get organs from anywhere within a 20-hour flight so that’s pretty much anywhere in North America we could have had lungs from,” said Pilon.
“And on average about 10,000 people in North America die, a day, according to 2008 statistics. So in 29 days that’s almost 300,000 people, and you’re telling me there wasn’t one? Because we didn’t have one dry run. Not one.”
'We're doing all that we can'
Erin Schimpf is the head of the Saskatchewan Transplant Program at St Paul’s Hospital.
She said she was not aware of any incidents in which an opportunity for donation was missed due to scheduling or adjustment issues, although she acknowledged that chances are missed.
“We have wonderful colleagues, supportive colleagues, and professionals throughout these buildings that have been nothing but supportive in facilitating us getting this done for these families in short order,” said Schimpf.
“I can’t speak for Dr. Beed, specifically what he’s referring to, and I would certainly not have the same experience myself, but reality is perception to that and I know that we have very supportive colleagues from the top down in this health region.”
In Saskatoon, there is a policy that deaths from all units in all the hospitals must be referred to the transplant program.
"When we see that we are not getting all the referrals from all those deaths we know right away what’s going on and we would go and we talk to the people in those departments," said Schimpf.
"We talk about 'OK, why aren’t we getting all the referrals? What’s happening here? Why can’t we increase that communication between us and you?”
Schimpf said the transplant medical team is "engaged" and dedicated to facilitating donations.
“Everyone has the same goal, is to get people well, is to offer them the best choices they can in their healthcare,” she said.
“We’re doing all that we can here, every single day, and down this hallway to make that happen,” said Schimpf.
In his speech from the throne on Oct. 25, 2017, Premier Brad Wall said the government will implement a new donation program before the end of the session.
The provincial government is yet to announce its decision on whether it will adopt an opt-out system, but the outgoing premier has expressed his support for presumed consent.
If it does introduce presumed consent, the government will be going against the recommendations of a report released by the provincial Standing Committee on Human Services last November.
It would also be the first Canadian province or territory to do so.
Although families affected by organ donation are eager to see it happen, the committee report said the province should instead set up a dedicated organ donation organization and a registry.
“Your committee understands that a presumed consent system for organ and tissue donation has not been implemented in any jurisdiction in Canada, and that implementation of such a system would likely be challenged in the courts,” reads the committee’s recommendation.
“Given this, your committee recommends the continued use of an enhanced opt-in system of consent for organ and tissue donation.”
The report also recommends introducing new roles for donor physicians, which are widely considered as being a key component of successful organ donation systems.
Their role would be to advocate for donations and develop programs related to organ donation, as well as educating frontline staff.
A health authority source told CBC News the province has confirmed it will fund new roles for a donor physician and donor co-ordinators, and possibly an external consultant.
The province said it could not confirm these details, saying it has "no updates" at this time.
According to Schimpf, public education will also be crucial to the success of any new program.
“When it becomes OK to speak about death in our culture, in our province, and to speak about the options that we have at the end of life, that’s when our donations are going to go up,” said Schimpf.
“And that’s part of the education that we need to be fostering and building in hospitals, at home, in the public sectors of all sorts, is that end of life care option and make transplant and donation a normal thing.”
When it comes to education for medical professionals, she said the program takes every opportunity to provide it.
A new type of donor
The provincial government is also supporting an increased focus on organ donations from “cardiocirculatory” deaths.
Most deceased donors in Canada are people who died from a “brain death,” which is determined based on neurological criteria, but donations from “cardiocirculatory death” are becoming more common in other provinces.
According the Canadian Institute for Health Information (CIHI), donation after cardiocirculatory death (or DCD) is defined as “donation from a patient with a severe brain injury or other terminal condition who does not meet the criteria for brain death but who has no chance of recovery and is removed from life-sustaining therapy with the consent of his or her family.”
Only two donations from cardiocirculatory deaths have ever occurred in the province but a DCD program was launched in Saskatoon in May.
Ethical concerns have been raised in the past over the question of how much time should pass after the heart stops beating before a person is declared dead.
Canadian guidelines dictate that a person cannot be declared dead until at least five minutes after the heart stops beating, but the amount of time differs around the world.
In Pittsburgh, Pa., it is two minutes, while in Denver, Colo., doctors have reported waiting just 75 seconds.
Beed said a small section of the medical community still raises concerns but he believes DCD has the potential to increase the number of donations in Saskatchewan.
“In almost every case of DCD the patient has a severe brain injury, so we’re not talking about a perfectly healthy 21-year-old whose heart stopped and they had five minutes without oxygen. Some of those people can be resuscitated and they do OK,” said Beed.
Ontario started doing DCDs in 2006 and by 2014, they made up 14 per cent of all donations.
According to the CIHI, DCDs made up more than 40 per cent of all deceased donations in the United Kingdom in 2012.
Schimpf said the number of hospital deaths that could lead to donation should increase from two per cent to about five per cent now that the province has a DCD program.
“We see increases across the country and internationally with deceased organ donation,” said Schimpf.
“We know that donation after [brain death] has kind of plateaued with the increase in safety: seatbelts, helmets and the wonderful work they do in our ICUs.”
James Breckenridge, the president of the Canadian Transplant Society, said his wife would be dead if Ontario had not started practising DCDs more than nine years ago.
In 2008, she was given two days to live as the symptoms of primary sclerosing cholangitis destroyed her liver.
“A regular brain-dead donor didn’t come forth and had she not had that (cardiac death) liver on the Saturday she wouldn’t be here today,” said Breckenridge.
The liver, a donation from the victim of a motorcycle accident, was a temporary fix that bought Breckenridge’s wife 10 months to wait for a better quality organ.
Within a year she had a permanent transplant that has given her good health for the past nine years.
Donation vs. Transplantation
Mark James believes any new program should include a standalone organ donation agency which is separate to the transplant program.
He said the current system, in which the transplant program also manages donations, is problematic.
“[Transplant teams] have ethically and morally and possibly even legally no role to play within managing a donor because of perceived and real conflict of interest,” said
“We need a standalone governance program to help manage this process and help through a co-ordinated and independent — in an ideal world we’d want an independent donor co-ordinator.”
Although he has been working towards changes "off the side of my desk" for years, he is optimistic that the province is taking steps to create separation between organ donation and transplant systems.
An Indigenous strategy?
Beed said the new program will need a separate Indigenous strategy to increase the number of donations from those communities.
He said Indigenous people could also make up a disproportionate number of people needing a transplant.
According to a 2013 report by CIHI, Indigenous people were more than three times as likely to be new patients for end-stage kidney disease than non-Indigenous people.
The same report suggested they were less likely to receive transplantation than non-Indigenous patients, with dialysis proving far more common, although often harder to access in remote communities. Indigenous people who were on dialysis also had lower survival rates.
Beed wants to see more advocacy and education for Indigenous communities across the province.
Facing up to the challenge
As she approaches her third year on the transplant waitlist, Monica Goulet can see a glimmer of hope on the horizon.
She said she had given up on the idea of a living donor after her son and sister were ruled out, adding that she would never ask anybody to be her donor.
But on a single day in November, two people offered to sign the forms to be tested for compatibility.
Goulet cried tears of joy when she heard the news and, although she’s very aware of the reality they might not be a match, her positive demeanour seems impermeable.
She misses small things like the daily baths she used to have and her connection to the community through her job as an Indigenous liaison for the Saskatoon Police Service. Vacations are tough; a batch of dialysis solution has to arrive at any destination Goulet plans to visit before she gets there.
But she has worked hard to build a protective seal to block out depressive and negative feelings. It’s not 100 per cent airtight, and Goulet faces a constant battle to keep exhaustion at bay. But she said she is determined not to let it bring her down, and she credits her family for helping her stay strong.
“When you have a chronic disease, one of the biggest things that you struggle with is depression and so it’s very easy to fall under the weight when you have that kind of assessment and that type of challenge in your life,” she said.
“And so for me it was either you rise to the occasion and face the challenge or else you let it consume you.”
Video: Matthew Garand, Chanss Lagaden
Graphics: Duk Han Lee