Interview: Donating an organ is giving a new life!

Interview with Louis Beaulieu, Executive Director and Secretary of Transplant Québec

Interviewed by Stéphanie Wells

A member of the Ordre des orthophonistes et audiologists du Québec (OOAQ), Louis Beaulieu has been executive director and secretary of the board of directors of Transplant Québec since 2008. He was also appointed a member of the board of directors of the Fonds de la Recherche du Québec — Santé by the Council of Ministers of Quebec in January 2010.

Can you give us a brief history of Transplant Québec?

Transplant Québec has existed for over 40 years. The organization was founded by transplant surgeons in the early 1970s under the name Metro-Transplantation, even before the advent of anti-rejection drugs. At the time, kidney transplants were only done. Over the years the needs have increased. The organization, which took the name Québec-Transplant nearly 25 years ago, began to benefit from government grants and has expanded its action throughout Quebec. In the early 1980s, cyclosporin, an immunosuppressive drug, made it possible to perform heart, lung and liver transplants by considerably reducing rejection problems. Cyclosporin has played a critical role in the history of transplantation worldwide. Then, in 2011, as part of a strategic review, we adopted the name Transplant Québec, which reflects our roots while respecting the French language more closely. Our new logo is associated with the motto “Together for organ donation, for life” because partnerships, collaboration and mobilization are essential to the realization of organ donation and transplantation. Very often, two or even three hospitals are integrated into the process, from donor identification to transplantation, including graft harvesting.

I would like to briefly recall the mission of Transplant Québec, which has five main components. For more than 25 years, the organization has been mandated by the Minister of Health and Social Services to ensure the coordination of the organ donation process across Quebec and to manage a single waiting list, which guarantees the fairness of organ allocation. The third component focuses on mobilizing institutions and partners to make the gift, hence the somewhat clever expression “catalyzing interdependencies.” Next comes the education and hospital development component, which involves training activities in hospitals to keep teams aware of the importance of donation and the identification of potential donors. Finally, the last component focuses on education and the promotion of values favorable to organ donation among the general population and the importance of expressing consent.

More and more people are waiting for a transplant, but the number of donors is not increasing proportionally. According to statistics, the number of people waiting increased considerably between 2004 and 2012, while the number of people receiving transplants remained stable, and the number of donors even fell slightly. The wait is longer and there are more waiting patient deaths. Is it a logistical problem or a problem in raising public awareness about giving?

I would say both. An optimal organization of all services is essential to the realization of the gift. According to the Spanish, who are by far the best in the world and who form a separate category, but also according to the Americans and the French, it is essential to organize the donation system effectively at each stage of the process. There are two main issues. First, more importance must be given to the realization of donations in health institutions. Several steps have been taken to promote the culture of organ donation in hospitals. Even in small institutions where there are only one or two donors per year, it is very important to identify them and have them referred to us. Transplant Québec must also be more present in hospitals to train critical care personnel — emergency and intensive care — where the majority of donors are identified. Following retrospective audits of the system, a study by the Collège des Médecins concluded that if the optimal conditions had been met each time — a utopia, of course, but it still gives an idea — there would have been 320 organ donors in 2008.

And how many were there?

In 2008, there were 151 donors. We are a long way from the 320! 151 donors give an average of 19.4 donors per million inhabitants. Spain has already reached 36 donors per million inhabitants. We still have our work cut out for us. I like to compare us to Americans and French people, whose average is around 25 donors per million inhabitants. You have to be able to achieve such results in Quebec. While we are happy to have fewer car accidents and fewer gunshot deaths than in the United States and are proud to provide excellent care for stroke patients, we cannot rely on these explanations to justify our number of donors. One of the objectives proposed to health institutions is first to reach 20, to finally reach 25 donors per million inhabitants. 20, that's what I call our glass ceiling in Quebec: we can't do it and yet, we should be able to. In terms of public awareness and education, a lot of effort is being made to make people understand the importance of expressing their consent to organ donation. In Quebec, we are fortunate to be able to express it in three ways: first, the signature on the back of the health insurance card; second, the registration in the register of the Régie de l'assurance Maladie offered since February 2011, and thirdly, the registration in the register of the Chambre des notaires, offered since February 2011, and thirdly, the registration in the register of the Chambre des notaires, offered for almost eight years.

Are people registering in large numbers?

In the RAMQ register, which dates back about two and a half years, there were 1,100,000 registrations last April out of a potential of just under four million. This is done when the health insurance card is renewed, and the RAMQ sends out about two million cards per year. That's a rate of about 27% of registrations, but in the last year, it reached 32%. One out of three is still good. And the register of the Chamber of Notaries has nearly 900,000 entries, not to mention that it requires additional effort, because you have to consult a notary.

Does notarial consent have greater legal value?

There would be cause for debate, but in principle, the two registers have equivalent value. Regarding the question of the refusal of the family, we have found that yes, it happens, we will not hide it from ourselves, but when someone has made their wishes known in writing and has spoken to their loved ones, it is very rare that the family does not respect the wishes of the deceased. Generally, rejections happen when people have not made their wishes known in writing and have not told their loved ones about it. This is why public awareness and education are extremely important factors. At the moment, a lot of effort is being devoted to deploying a program for high school students, i.e. 15 and 16 years old, in all schools in Quebec. We want young people to be well-informed, while making them think about the importance of consent. Obviously, I would prefer for everyone to say yes to organ donation, but we must respect the desire of some to refuse it. It is interesting to note that in the register of the Chamber of Notaries, out of the 900,000 registrations, there are 86% yes and 14% no. This reflects the results of our 2008 and 2009 surveys, where 9 out of 10 people said they were in favor of organ donation. So yes, efforts must be made on both fronts, namely the organization of hospital services and awareness-raising.

There are things that are moving to improve the organization of the system. For example, there was a request to appoint part-time organ donation coordinators in each hospital who would have the medical responsibility for ensuring the realization of any potential donation. It will happen gradually, and soon, I hope. These are not decisions that depend on us, but on the Ministry of Health and Human Services. In collaboration with the Quebec Association of Health and Social Services Establishments (AQESSS), which includes all hospital centers and CSSS, a standard procedure has been established that has been in force since last year. From December 2012 to today, there is a sustained activity of about 13 to 14 donors per month. I will soon be in my sixth year at Transplant Quebec, and I had never seen this before. Our increased presence in hospitals certainly has something to do with this. What matters to me is sustainability in the face of change, including during the summer, which is often quieter.

We have also been offering online training since last May on the standard procedure, which more than 750 people have completed to date. Soon, we will know exactly who followed it, by hospital and by type of profession, which will allow us to better target our strategy. When it comes to education and awareness, you need to be there all year round, not just during National Organ and Tissue Donation Week. For example, in February, we release our statistics, in April, it's National Week, in April, it's National Week, and on October 17, there's World Donation and Transplant Day, not to mention the various conferences we participate in during the year... One of the initiatives I'm most proud of is the solicitation of municipalities, which began three years ago. At the time, 24 municipalities participated in National Organ Donation Week, and this year there were 82. It allows us to reach citizens on a municipal basis.

Let's go back to the Spanish model and its presumed consent. The donor rate per million inhabitants is more than twice as high as in Quebec, and ours is lower than that of the United States and France. How does presumed consent work, and why not apply it here? From a legal perspective in Quebec and Canada, what would be the legislative changes likely to increase the number of donors?

The National Assembly repositioned itself in December 2010 with the Act to facilitate organ and tissue donations, and it was decided to maintain an explicit consent model. This is how the RAMQ register was born, in which only “yes” votes are recorded, that is to say consents to organ donation. This choice seems more indicative of the North American spirit. The United States also has explicit consent, which is called the First-Person Consent, while the French and Spanish have presumed consent. It is important to know that these laws were passed in the 1970s. The relationship between the citizen and the state has changed considerably over the past 30 years. The British published a comprehensive study in 2008; and they decided not to adopt the presumed consent model for two reasons. First, they found that for a significant portion of the population, there is a certain lack of legitimacy for the authorities that govern us to decide for citizens the provisions relating to the integrity of the body at the time of death and all that follows. Second, with a presumed consent model, the state has an obligation to inform citizens of their right to say no. We would therefore be obliged to provide information on the refusal, which is correct, except that the procedure can be counterproductive: rather than educating people to say yes, we say: “You have the right to say no”. In some countries like Brazil, it was very, very misunderstood by the population, and they finally went back on their decision.

But in Europe, the results are convincing, aren't they?

Indeed. On the other hand, the Spanish claim that presumed consent is not what makes them successful. Rather, it is the organization of services and the study of data, whether it is hospital data in real time or retrospective data from audits evaluating the performance of the system. According to them, this is the key to their success, not to mention the importance of assigning doctors and nurses to donate organs. The French have presumed consent, but they always engage in a discussion with the family — like the Spanish, by the way — and if there is firm opposition from loved ones, they will not proceed with the donation despite the presumed consent. But unlike us, if they donate anyway, they cannot be prosecuted, because they have the legal right to harvest organs without explicit consent. But they observe a moral pact with the families of the deceased. And you should know that you need the help of the family to obtain essential information during the donor evaluation.

I will never forget what the Director General of the Agence de la Biomedicine de France said during a conference: “In some cases, a gift can do more harm than good to a family, and it must be accepted.” In the Civil Code of Quebec, it is written that the will of the donor must be respected, etc., unless there is a compelling reason. But it was never clearly defined. It can be understood from a legal point of view, or even from a medical point of view. It is the medical teams who are in contact with the family who must judge the situation, making the best possible decision under the circumstances.

Can you give us an example of a situation where giving can do more harm than good to a family?

Take for example a family that expresses fierce opposition and is experiencing great distress. We can explain as best we can, but a moral dilemma can arise: “Yes, he said it, but is that really what he would have wanted?” This is why we keep saying that it is extremely important to clearly express our wishes to our loved ones during our lifetime, who can attest to our wishes. It should be remembered that the issue of donation most often arises as a result of sudden death: a cerebral hemorrhage in 50% of cases, and trauma in 25% of cases.

The families are already very shaken up.

Indeed. Moreover, teams are very much stressed on the importance of decoupling, that is, that the neurological death is announced in the first place, and that the donation option be presented at a later time, preferably by another person, to give the family time to deal with the shock. She will be more open to discussing organ donation later on.

It would be desirable for all data from hospitals to be publicly available, and for them to be able to be compared effectively. Let me explain myself. A hospital like the CHUM, which treats patients for various health problems, should have a higher number of donors and a higher number of organs per donor than that of the Montreal Heart Institute, for example, whose patients obviously have hearts that are unfit for transplantation. It is therefore necessary to compare comparable ones, if I may say so, in order to generate emulation, but also to make medical teams even more aware of the importance of giving. They already are, but the publication of this data could further raise awareness of the importance of making a donation. We are working with AQESSS to convince health institutions to publish this data on a voluntary basis, but legal clarification would probably improve the performance of the system in general.

At Transplant Québec, were you disappointed by the government's decision to maintain explicit consent in 2010?

I would say no. An approach aimed at improving the organization of the system has been recommended for several years. A law of presumed consent could have given the false impression that our work was done. I fully understand the perspective of a person waiting for a transplant, and their interest in presumed consent. But France and the United States, whose two models are opposed when it comes to consent, are achieving the same results. So it's not the magic bullet. Perhaps we will get there in a few years, but this choice will have to be accepted by the population. Currently, according to the latest polls, Quebecers are divided roughly equally on the issue of presumed consent. In my opinion, an in-depth reflection on the aspects of the Civil Code on the concept of person would be necessary and would therefore open up a wider debate. That is why the government's decision did not disappoint us. For the time being, it is essential to focus our efforts on improving performance in health institutions, and when the time comes, we can reopen the issue of consent.

Smaller institutions are not always well organized to promote organ donation. However, it is essential to recognize potential donors quickly. Is the situation improving?

I am very enthusiastic about the results observed since December 2012, but organ donation still experiences significant fluctuations, because we are working on very small numbers, with 80 hospitals across Quebec. In the smallest establishments, it is really a constant effort, because out of 200 deaths, there are on average two potential donors, or 1% of deaths. But we are in the process of launching a pilot project in all institutions in Quebec where there is critical care (intensive care and emergency). The aim is to compile the statistics for four variables: the donor identification rate, the reference rate, the family consent rate and the number of organs harvested per donor. Each hospital will be able to identify, from the records of deceased patients, those who could have been potential donors. The hospital will have this data in near real time, which will be an important factor for improvement.

Two donors in a hospital is not much, but multiplied by several small establishments, isn't that considerable?

Absolutely. With 25 donors per million inhabitants, we would have nearly 200 donors per year out of a utopian potential of 320. It seems feasible to me, but we have to go at it in stages, celebrating our successes rather than constantly aiming too high and being disappointed at not reaching our goals. Rather, it is a question of aiming for a goal of 20, then 21, to finally reach 25 donors per million inhabitants. Together, collectively.

What is the impact of your promotional campaigns? Are you able to raise public awareness? Is the message about brain death reaching its target?

Brain death is unsettling to observe. The body is warm and the patient is breathing, but only thanks to assisted ventilation. It must be reiterated that in order to donate organs, death must be declared by two doctors who are not involved in organ harvesting or transplantation, while all other deaths are recorded by a single doctor. It is a security mechanism put in place by the legislator. For our part, it's about informing people about brain death, and reminding them that every effort is made to save the patient's life first. Then, when brain death is established and the donor is identified, there are only a few hours before the organs are harvested. In intensive care, special support is needed so that the body does not disorganize too quickly. There is an image that I like, even if it is imperfect, that of saying that you take the “little function that is left in an organ, but is no longer sufficient for life in the person's body”, and that you put it into someone else, so that life can continue, sometimes for 25 to 30 years.

More specifically, with regard to fibrocystic patients waiting for lungs, their number is constantly increasing. Can we hope to do more than thirty lung transplants per year in Quebec? Why is there such a difference with the Toronto transplant centre, which practices around 100 transplants per year? However, proportionally speaking, around sixty transplants should be done per year in Montreal to match Toronto's performance.

It is indeed necessary to be able to do more than 30 lung transplants per year, but donors must be there, with quality lungs. Ultimately, it is always the surgeon who decides whether to take the organs or not, because there is no turning back when you started to remove the recipient's lungs. In Toronto, they have one of the best lung transplant programs in the world, in particular thanks to ex vivo graft rehabilitation technology, which makes it possible to recover 40% of the lungs of potential donors instead of the usual 15%.

Will this technique be practiced in Montreal?

It is not yet, but it is coming and it is extremely promising. (Note by SVB: The directors of the CHUM lung transplant program, Dr. Pasquale Ferraro and Dr. Charles Poirier, have taught us that they will acquire an ex vivo infusion device in a few months, which will make it possible to do at least 5 to 10 more lung transplants per year.)

In Ontario, how many donors are there per million people?

Ontario's results were better than ours last year. It was a first. This year it seems to be more difficult. The Ontario government has invested heavily over the past decade, and post-death organ donation in Ontario has increased substantially. As for donations from living donors, especially kidney and liver donors, they are much higher than those from Quebec. We are in the last group in living donations, while in terms of deceased donations, we have been in the top group for more than ten years. Why aren't we getting more living donors? That is a very good question. It is observed that countries that are more successful in deceased donations are often less successful in living donations. Obviously, the harmful aspect for the donor must be considered. There is always a risk for the donor, even if it is minimal. It seems that in Latin countries, living donations are less encouraged than donations after death, perhaps because of legislation.

More macroscopically, a recent article in the journal Transplant shows that in the United States, there was an increase in living donations until 2004, but since then, there has been a decrease. We're trying to figure out why. Without going into details, seven or eight factors are mentioned to explain this decrease in living donations. That said, in Quebec, there are about six living donors per million inhabitants, while we should reach 15, or even 18. In Ontario, they have over 20 living donors per million people.

Are efforts being made for living donations at Transplant Québec?

Our mandate is vague and limited when it comes to living donations. We are ready to do more, always while respecting living donation or transplantation programs, and we believe that we could mobilize teams towards more effective practices, not to mention the education and awareness component. We have started to incorporate living giving more into our messages, but we still don't know what the impact is.

Have there already been lung transplants from living donors in Quebec?

As far as I know, that never happened.

In conclusion, would you like to add anything?

I am grateful for the chance to share information with your readers through this interview. We are very concerned about patients who are waiting for a lung transplant, and we work really hard, while encouraging all partners to excel, because we know that it is a matter of life and death. Moreover, one argument invoked for the implantation of ex vivo devices, which will eventually allow ten more lung transplants per year, is that the costs of hospitalizing a single patient waiting for months in the hospital for months would finance their use. The MSSS is very sensitive to this, but in the current context, with budget cuts, it is always necessary to demonstrate the cost-benefits. There is a great deal of receptivity to the issue of donation and transplantation, but it is important to constantly remind ourselves of the importance of transplantation and its impact on the lives of patients, both individually and collectively. Transplant patients often return to work, pay taxes, have friends, family, loved ones... Their lives were seriously threatened and all of a sudden, that's it, here we go again! It should be remembered that expenses in the area of donation and transplantation are in fact investments. Yes, there are costs to transplant, but they are much lower than those associated with frequent hospitalizations. It is an important message that we want to convey. Two studies published in 2012 — one from the Institut National d'Excellence en Santé et en Services Sociaux du Québec (INESSS) and the other from the Kidney Foundation of Canada — reveal that kidney transplantation generates net savings for the system. According to INESSS, up to 20 million could be saved over 10 years by increasing the number of deceased and living kidney transplant donations. According to a study by the Kidney Foundation of Canada, savings could reach 50 million if one in two transplant recipients returns to the workforce.

It is rare in health to be able to say that an intervention reduces costs. This is a source of inspiration for our decision-makers. I would like to add that it is important for each transplant person to share their experience. For example, why not go talk to your deputy, to inform him and raise his awareness. Most elected officials genuinely want to improve things, contrary to what the prevailing cynicism would lead us to believe. And it must be said: seven to eight out of ten people live at least five years after the transplant, all organs combined.

I would like to emphasize again an aspect that I have already mentioned: the importance of making your consent known to your loved ones. I would add that you should never exclude yourself as a potential donor. Even transplant recipients can sometimes donate when they die. People are often surprised to learn that the oldest donor was 88 years old, and that the youngest was two days old — which is very sad, of course... Nor should you rule yourself out because you suffer from this or that disease. Even if you had skin cancer seven years ago, it does not necessarily mean that you are excluded. It is up to Transplant Québec and the medical teams to qualify donors, and the acceptable risk is always assessed according to the health status of the waiting patient. Here is my message: make your wishes known, talk to your loved ones, and don't exclude yourself as a potential donor.

Thank you very much, Mr. Beaulieu.

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