Organ donations: failures of the Quebec system

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Organ donations: the failures of the Quebec system

About forty people die every year in Quebec while waiting for an organ. Yet organs are wasted by a system that not only lacks resources, but monitoring and accountability.

Organ donation.

It all started during a tennis game in Bromont in 2019. Marc St- Laurent realized that he had difficulty speaking, as if he were intoxicated. The first sign of a terrible disease, amyotrophic lateral sclerosis (ALS) which would push him a little over a year later to seek medical assistance in dying.

Marc saw no way out of his illness, says Irène Trépanier, his spouse. But, on the other hand, he knew very well that by donating his organs, he would allow other people to continue to live. It felt like a balm, it gave meaning to his departure.

On the morning of November 17, 2020, Marc and Irène went to the Center hospitalier universitaire de Sherbrooke. It's the 64-year-old's last day.

The couple knew that in cases of medical assistance in dying, the heart cannot be removed, but they believed that the liver, kidneys and lungs could be used.

A few hours before the procedures, however, the Transplant Quebec nurse tells them that the liver and kidneys will be removed, but not the lungs.

Since the death of her husband, Irène Trépanier has continued her efforts to make the organ donation system work better in Quebec.

She mentioned to us that there was a lack of equipment to operate a device that does some sort of treatment to the lungs before they are transplanted. I said, “Well, come on, that doesn't make sense. These are lives that are at the end of that", says Irène Trépanier.

She is convinced that her husband's lungs were good. Athlete, he had never smoked. A month before his death, he had played a last game of tennis.

Lucie Vachon's husband could not donate his lungs either. André Masseau also had ALS. He requested medical assistance in dying on June 28, 2021. He died three days later, at the Haut-Richelieu Hospital, at the age of 57.

Through Transplant Quebec, the non-profit organization that coordinates organ donations in Quebec, Lucie Vachon learned that the liver and pancreas were not of good enough quality. The kidneys were removed. In the case of the lungs, the time to find a compatible recipient would have been too short.

Lucie Vachon also learned at the last minute that her husband's lungs would not be saved for donation, due to lack of time to find a recipient.

Maybe if we had known, we would have chosen another date, she regrets. Maybe my husband could have said, “I can wait another three days”.

“When you decide to give organs, you abandon yourself to the hospital, to the medical field. You say to yourself, they are the experts. But there are still gaps. »

— Lucie Vachon

An organ donation.

Good organs that are not allocated, unfortunately this happens regularly. And each time, in my opinion, it's a tragedy. This is unacceptable, says Dr. Pierre Marsolais. The intensivist and internist at Hôpital du Sacré-Coeur in Montreal has been deeply committed for years to the cause of organ donation.

Organ donors are rare. Only 1-2% of patients who die in hospitals meet the medical and legal criteria for organ donation.

In 2021, 888 people were waiting for organ transplants in Quebec. During the wait, 34 deaths occurred.

The shortage is there, underlines Dr. Michel Lallier, transplant surgeon at the University Hospital Center of Montreal and at the CHU Sainte-Justine. One case is already too many. Do people hear about it? Do the people who are waiting hear about it? Definitely not.

In the United States, a 2017 University of Pennsylvania study found that every year 28,000 potential organs go unused, including one in four livers.

Heartbreaking statistics, which even led a former Obama administration organ donation policy official, Jennifer Erickson, to declare in the Washington Post that after his death she wished that an investigative journalist ensures that his will to donate his organs will be respected.

Quebec does not collect data on so-called organ allocation. Currently, we do not have these figures, says Dr. Matthew Weiss, medical director of organ donation at Transplant Quebec. It is not one of our indicators. But it's something we're talking about more and more.

Doctor Matthew Weiss is Medical Director for organ donation at Transplant Québec.

This lack of follow-up and data is everywhere in the very complex organization of organ donation and transplantation, believes Dr. Samara Zavalkoff, pediatric intensivist at the Montreal Children's Hospital.

It was while meeting young patients waiting for an organ transplant in intensive care that she began to ask herself questions about the system. Like several other experts, she says he misses many potential donors, who are simply not identified.

This is a serious event that should never happen, insists Dr. Zavalkoff. When a donor is not referred, she says, it should be treated as a critical patient safety incident. Someone can die or have complications because they have to wait longer. You have to ask yourself questions and document the reasons why this donor was not referred.

If you don't evaluate a donor, it doesn't show up. surgeon Michel Lallier. It's just a death.

Donor and missed organ follow-up has been done for some time in Quebec. Between 2006 and 2015, committees under the aegis of Transplant Québec reviewed hospital files.

Everything was monitored, and people were more careful. Each time we identified a problem, we addressed the problem and called the people concerned, recalls Pierre Marsolais.

The College of Physicians of Quebec also conducted its own audits, which were even made public. In 2009, for example, there were 138 deceased donors in Quebec, while there could have been up to 344. But in 2010, the College of Physicians passed the torch to Transplant Quebec.

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The surgeon Michel Lallier wonders if these exercises of file review and evaluation of the medical act are still done today. There is an opacity there. I do transplants, I'm involved. Not knowing if it's happening or not is not normal.

In an email sent to Enquête, Transplant Québec states about its former internal monitoring committees that compared to the considerable efforts made in terms of time and resources, they brought few significant gains.

Dr. Matthew Weiss ensures that Transplant Québec will soon be able to better identify shortcomings in the organ donation process, through a new system of quality indicators, the IQDO. Starting this year, he says, we will have much more up-to-date figures, with more standardized definitions.

Lungs in an ex vivo pulmonary perfusion device

For the moment, Irène Trépanier, she discovers how difficult it is to obtain clear answers to her questions.

After the death of her husband, she communicates with all the possible authorities: the Protector of Citizens, the College of Physicians, the Fleurimont Hospital of Sherbrooke (CHUS) the University Hospital of Montreal (CHUM), (where all lung transplants in Quebec are done), and Transplant Quebec.< /p>

She wants to prove that her husband's lungs were good. She also wants to confirm that it is indeed a lack of equipment for the ex vivo machine that has caused the problem. The Ex Vivo Lung Perfusion System is a state-of-the-art technology that allows the lungs to be assessed, stabilized and even treated outside of the body. For cases of medical aid in dying, ex vivo is mandatory at the CHUM, to avoid overly invasive tests on living donors.

On April 1, 2021, Irène Trépanier received a response from the CHUM. The lack of availability of the ex vivo device, it is written, could have played a role in the decision, but there were other considerations. […] The lung transplant team judged the risk to be significant. The hospital suggests that the condition of organs removed as a result of medical assistance in dying may be problematic.

Yet that's not what Dr. Marcelo Cypel, a thoracic surgeon at the University Health Network in Toronto, finds. We have done nearly 50 lung transplants from donors who have had medical assistance in dying. And really, these are very good quality organs.

Through a lawyer, Irène Trépanier managed to obtain her husband's medical file from the Center Sherbrooke University Hospital. Investigationhad it read to Dr. Cypel and another Toronto thoracic surgeon, Dr. Marc de Perrot. According to them, nothing in these documents indicates that the lungs could not have been removed.

What is the precise reason why they were not? Irène Trépanier hoped Transplant Quebec would help her get more definitive answers. But in an email, the organization clarified that it had no decision-making power regarding the refusal or acceptance of an organ by a transplant program.

The organization also refused its request for access to Marc St-Laurent's file, citing the Act respecting the protection of personal information in the private sector.

Irène Trépanier deplores a lack of transparency. In my head, there is someone who has not done their job.

She had also asked Transplant Quebec if the lungs had been offered outside the province, as is common when the organs are not used in Quebec. On this issue, the organization is more transparent. They were not, we inform him by email. In cases of medical assistance in dying, organs cannot be allocated out of province. If there are exceptions, the sample must be taken by Quebec teams.

Following the steps taken by Irène Trépanier, however, Transplant Québec modified these directives. Since August 26, 2021, organs removed in the context of medical assistance in dying can now be offered externally. However, at least one organ from the donor must be accepted in Quebec. The presence of a local collection team is always required.

Contacted by Enquête, the hospitals concerned and Transplant Québec indicated that the Act respecting the confidentiality of medical information does not allow them to comment on the file.

Pierre Marsolais, intensivist and internist at the Hôpital du Sacré-Coeur de Montréal

It hurts me to say it . Quebec has been a leader. But for the past twenty years, it's as if we've been treading water, laments Dr. Pierre Marsolais.

In 2000, the rate of deceased donors per million population in the province was higher than the Canadian average. Quebec even surpassed countries like France. It is now below the Canadian average. In 2019, before the COVID-19 crisis, Ontario had a donor rate of 26.1, compared to 21.3 in Quebec.

The gap is still more marked with countries such as Spain and the United States, which respectively record donor rates of 48.9 and 36.1 per million inhabitants.

It However, there were two times when Quebec should have expanded its pool of organ donors.

Prior to 2007, the province only harvested organs from brain-dead donors. But that year, surgeons also began to do so after cardiovascular deaths.

In 2010, Quebec passed Bill 125, which required directors of medical hospital professionals to report any potential donors.

But the number of donors is not increasing significantly.

Regarding the law, the medical director of donations at Transplant Quebec, Matthew Weiss, says that many people in the hospital environment do not know that it exists. So they don't even know they're breaking the law. He adds that there is no mechanism to enforce it.

Since 2016, Quebecers can have recourse to medical aid in dying. And more and more of them want to donate their organs. Since the beginning of the year, 19 people have done so. Will we succeed this time in taking advantage of this new opportunity to increase organ donations?

Surveys indicate that more than 90% of the Quebec population wishes to donate their organs , recalls Dr. Michel Lallier. It's not that Quebecers aren't ready to give, it's that the organization isn't doing the maximum.

The system is saturated, adds Dr. Pierre Marsolais.

Lack of resources may contribute to failures in the organ donation system.

Recent incidents seem to prove them right.

I don't know where it stumbled, but something happened because we lost this donor, says neurosurgeon Jean-François Giguère, still troubled.

One ​​of his patients died a few weeks ago at Hôpital Maisonneuve-Rosemont. The patient had expressed his desire to donate his organs and his spouse agreed. But the case could not be processed for several days.

I was told that there were several donors at the same time and that we could not cope with the request, says Dr. Giguère.

Faced with this delay, the family changed their minds and the donor died without being able to donate his organs.

The doctor asked the hospital's morbidity-mortality committee to look into about this incident. He considers that he was unable to offer his patient the treatment he wanted, that of saving other lives by donating his organs.

When we is doing awareness campaigns so that everyone signs their card and that in the end, we don't have the resource, I find that there is a problem there.

Hôpital Maisonneuve-Rosemont did not want to comment on the file for the same reasons of confidentiality of medical information.

Dr. Matthew Weiss of Transplant Quebec says the incident is unacceptable. But he doesn't seem surprised. It also happened a few weeks ago, he says. We did not have the staff at Transplant Québec to process all the files that were open. It breaks my heart. It's our responsibility, but we just didn't have enough staff.

The criticism is not only going to Transplant Quebec, underlines Dr. Lallier. I'm not sure there is a government choice to say: "yes, organ donation must be a ministerial priority, and we will put the necessary funds in place".

Dr. Michel Lallier, transplant surgeon at the Center hospitalier universitaire de Montréal and the CHU Sainte-Justine.

Transplant Québec's annual budget exceeds $9 million. That of its Ontario equivalent, the Trillium Gift of Life Network, amounts to nearly $60 million.

Transplant Québec calls for a social debate on organ donation as there was on medical assistance in dying. Everything is on the table: presumed consent, role of the family in the decision, revision of the law to impose more accountability and reporting, funding and access to resources such as intensive care and operating rooms.

In the rest of the country, Health Canada has launched an initiative called the Collaborative in Organ Donation and Transplantation to meet critical needs.

On the program in particular: to create a pan-Canadian data system. Among other things, Dr. Samara Zavalkoff is working on a strategy to reduce missed opportunities for donor identification and improve accountability mechanisms in the system.

Dr. Samara Zavalkoff, pediatric intensivist at the Montreal Children's Hospital

Quebec does not participate officially, however, for reasons of provincial jurisdiction in health matters, according to the medical director of organ donations at Transplant Quebec.

The pressure is likely to increase on organ donation and transplantation coordination bodies. With the increase in donations in the context of medical assistance in dying, families are present throughout the process, and therefore witnesses. They begin to ask questions.

Irène Trépanier does not want to let go. As much as Marc, his mission was organ donation, she says, mine is to denounce, to try to get things done so that it doesn't happen again.

The report by Chantal Lavigne and Sophie Lambert is broadcast on Enquête on Thursdays at 9 p.m. on ICI Télé. It is also available in catch-up on ICI Tou.tv.

Organ donations: “We had a jewel and we broke it in Quebec”

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