HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, March 9, 1999

• 0907

[Translation]

The Chair (Mr. Joseph Volpe (Eglinton—Lawrence, Lib.)): Good morning and welcome. Pursuant to Standing Order 108(2) we are conducting a study of the state of organ and tissue donation in Canada. We are resuming our hearings.

Today we have a witness who is well known to members of the committee, Mr. Donald Langlais, who is the representative of a francophone province despite his name. He is the director of Québec-Transplant. We also have Mr. Richard Tremblay, president of the Canadian Association of Organ Donation. Each gentleman will make a five-minute presentation. I think they are each dealing with two different subjects, right?

We also have Ms. Isabelle Gendron, executive director of the Fondation Diane Hébert, and lastly, from the Queen Elizabeth II Health Science Centre, Ms. Mary Ellen Gurnham, Nursing Director.

[English]

I bid you a good morning as well.

We are going to begin, if we might, with Mr. Donald Langlais, whom we've seen before in this committee. This morning, if I'm not mistaken, colleagues will find before them a report. It's the Gélineau report, to which Mr. Langlais made reference last time. You have it there before you. He's not going to read it, but he's going to make reference to it. I believe Mr. Tremblay is also very much a part of this report. He will refer to it as well, but in a different capacity.

For the sake of those who have not been here before, I will tell you, you have about five minutes to present your testimony. Please don't feel you have to read exactly what you have. Tell us your message, and then we go from there to questions and answers from committee members and a dialogue for the time remaining.

Mr. Langlais.

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[Translation]

Mr. Donald Langlais (Director, Québec Transplant): Good morning. It is true that I have appeared before this committee before. I feel a bit more comfortable meeting with you and talking to you.

I will not be following the presentation outline exactly; I will deal with the major points. In the document that we tabled with you, our aim was to deal with the major mandates or concerns that you had and indicate the experiences that we've had and that we are working with currently in Quebec.

Québec Transplant was created after organizations such as Métro-Transplantation and following a study by a ministerial committee in 1991. The Gélineau report, in 1997, examined the whole issue of organ donation in Quebec.

The highlight of the last report was the new way of indicating one's willingness to be an organ donor through a sticker on health insurance cards. In Quebec, we now indicate our willingness to donate organs by placing a sticker on our health insurance cards. This is the card used when we arrive at the hospital.

We solicited the appointment of people to take intra-hospital responsibility in each hospital.

Québec-Transplant used to work on public awareness and has withdrawn from this field. In the meantime, following the Gélineau report, a group called Info don d'organes has been created and all associations involved in the cause of organ donation participate in it, including the CODA, the Fondation Diane Hébert and other foundations.

Québec Transplant will now focus mainly on managing the single centralized list of patients awaiting transplants, coordinating the overall organ donation process, training and educating nursing personnel, follow-up and of course, sound management.

Let us now turn to the documents you sent to us. I will attempt to examine briefly each of your expectations in order to provide you with a few examples of the work done in Quebec.

With regard to public awareness and knowledge of organ donation, 80% of the population apparently supports organ donation. One can verify this figure to see if this percentage is still valid, check out people's fears about the process and of course, make the facts about organ donation known in an easy to understand language. Public awareness activities are carried out by IDO, but Québec Transplant remains close to that organization to support it from the scientific and technological standpoint.

With regard to awareness and knowledge among health care professionals, it has been very clearly established that it is in the hospitals that potential donors can be identified. There are still health professionals who believe that there is a set age limit on organ donors, and that the donor has to have died accidentally. The level of misinformation among health care professionals is quite surprising.

The proposals we want to work on and which support your recommendations are as follows: to support continuing education of health professionals; to set objectives for every hospital; checking out the supply of potential donors; ask the agency that accredits hospitals to consider inserting awareness of organ donation in their accreditation document.

In Quebec, in every hospital centre, one person is appointed to take charge of the process of recruiting potential organ and tissue donors. Currently, approximately 80% of stakeholders have proceeded with this appointment.

We are also working on the development of what we call a follow-up tool. We know full well that patients who are potential donors are found mainly in units such as the emergency room or intensive care. We want to develop a tool that allows both the medical staff and nursing staff to verify and monitor, on each shift, whether there's anyone whose condition makes them potential donors.

We are currently negotiating for a statistical survey that would identify the percentage of potential donors out of the number of deaths per year. I would like to point out that it is very difficult for the individuals appointed within hospital centres to work if we are unable to give them specific objectives to be attained.

Nursing staff training and education is obviously one of Québec-Transplant's roles.

No matter how members of the public indicate their willingness to donate organs, if health professionals do not feel they have a responsibility, then all our efforts and those of groups dedicated to this cause may be in vain. Health professionals must be informed, their knowledge must be expanded and they must be challenged.

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You also referred to formulating national safety, procedural and post-operative standards.

A great deal of work has already been done at the national level. In March 1998, each agency responsible for organ donation was given the fourth version of the document entitled "Standard for Perfusable Organs—Canadian General Standards on Safety of Organs and Tissues for Transplantation". Clearly this is a concern, and one that is evolving.

Each of the agencies responsible for collecting and allocating organs uses its own procedures for checking into any risks that may be posed to the recipients.

We would like to make the following proposals on this subject: that national standards be promptly drafted and tabled; that there be an agency at the national level for epidemiological follow-up on recipients; and that research be pursued into developing an analytical tool that would detect any infectious illness that should not be transmitted.

In Quebec, the Public Health Department will be the agency that compiles this data and the Quebec College of Physicians and Surgeons will initiate an evaluation procedure for the whole process as regards both the donor and the transplant itself.

In conclusion, here are our observations. As medical technology evolves, we will see waiting lists for transplants getting longer. The public seems generally to be comfortable with the idea of correcting health problems by a safe and healthy organ transplantation. The hospitals are the key to the whole process.

Therefore we must make sure the process is safe, identify specific objectives and develop ways of evaluating these objectives and ensure follow-up. Thank you.

The Chair: Thank you, Mr. Langlais. We will now hear Mr. Tremblay.

Mr. Richard Tremblay (President, Canadian Association of Organ Donation): Mr. Chairman, ladies and gentlemen, it is with great pleasure that I appear before you this morning to explain the history of the Canadian Association of Organ Donation, whose activities began in December 1984 and whose mission it is to raise public awareness and provide medical assistance in Quebec, as well as to provide medical assistance to doctors from other provinces of Canada.

For many years now, we have participated in many public awareness campaigns for the cause of organ donation. We waged a national campaign entitled “D'un accord mutuel” supported by our financial partner, the Groupe La Mutuelle.

In Sherbrooke, we established a coordinates conservation bank which is the third in Quebec. In Sherbrooke, we also implemented the first heliport in Quebec for transportation of organs. In March 1987, we instituted the first 11 emergency transportation units for medical teams and human organ transport in existence in North America. This is unique and is carried out by volunteer police officers from across Quebec. There are almost 2,000 of us available in Quebec night and day, 24 hours a day and seven days a week to transport organs and medical teams from all over Quebec, London, New Brunswick, Toronto and so forth. These teams are received by the units, transported to the harvesting centre and then brought back immediately.

Since March 1987—we're celebrating our anniversary this month—we have made more than 5,000 emergency transportation runs throughout Quebec, which represents more than 7,000 hours of emergency driving, with more than half a million kilometres covered transporting more than 2,000 organs delivered to their destination and almost 3,000 instances of assistance to medical teams throughout Quebec. In terms of the number of human organs, we've transported over 1,000 kidneys, 338 hearts, 436 livers, 26 pancreases, 145 lungs and 443 other organs.

We've estimated that our work has allowed the Quebec health system to save and protect a budget of approximately $1.5 million, which has been reinvested in various transplant programs in Quebec, thanks to the support of our volunteers and people who have dedicated themselves to this cause 24 hours a day.

• 0920

Over the years, we have focussed our efforts on public awareness. We have distributed dozens and dozens, if not hundreds of thousands of organ donor cards throughout Quebec and Canada through our national partner. We've mobilized people and helped demystify as best we could this extraordinary cause.

We believe, and polls confirm this—we have attached a copy to today's presentation—that a high proportion of the population of Quebec and of Canada in general supports this cause. Naturally, I fully agree with the statement made by my friend Mr. Langlais of Québec-Transplant. Over 80% of the population is committed to this great cause. According to the same survey, 58% of the people who belong to the organization we founded feel that recognizing a donation is an exceptionally good way of promoting the cause.

This is why, in 1994, our organization established the first monument dedicated to the memory of organ donors of Quebec and Canada. This magnificent monument is located in Sherbrooke. It currently lists the names of over 600 deceased individuals who have posthumously received the title of Ambassadors of Health from His Excellency, the Lieutenant Governor of Quebec. A civic ceremony takes place once a year in Sherbrooke to honour the families and of course the donors.

This is a very emotional event, filled with recognition and respect for these people and it is, in our opinion, an excellent way to recognize this public-spirited gesture, this extraordinary gesture that enables us to transmit our health as a legacy. We believe that this kind of event should be done on a larger scale, in other provinces, in an attempt to promote the cause of organ donation as well as to recognize this very generous gesture.

In the documents that I submitted to the committee, you'll see that the following inscription appears on the front of the monument: “In homage to all those who have donated organs.” There is an extraordinary sentence that reads as follows: “Greater love has no one than this, to lay down life for a loved one.” What can you say about a person who gives their heart to someone they don't even know?

Mr. Chairman, dear members of the committee, on behalf of the Canadian Association of Organ Donation, what I'm telling you, and what we're humbly trying to communicate to the committee, is that the public supports the cause of organ donation. The population of Quebec and of Canada believes in this great cause. We have expertise throughout the country to carry out organ transplants. The only problem is that the supply of organs never meets the demand.

We fully support what Mr. Langlais has said and we believe that work must be done at the hospital level. To that end, the work will be easier if the public is made more aware of this cause. People will even take the initiative to tell medical staff that their children, brothers and sisters have consented to donate their organs to save someone else.

We believe that must invest in coordination in all hospital centres in Quebec and Canada in order to be able to respond to urgent needs. Right now as we speak, there are people who are dying throughout the country because of a lack of organs. So I do hope that decisions will be made very quickly to help this great cause as soon as possible so that organ donation becomes as natural as giving blood.

Thank you, Mr. Chairman.

The Chair: Thank you, Mr. Tremblay.

[English]

For the next two presenters, I would just advise members that we don't have a translated copy of the presentation. I have the original copies here with me, but our translation service hasn't been able to get the translated copies available for all members. I say that for colleagues, as well as for the two presenters.

• 0925

The two items will be made available and presented to colleagues as soon as they are translated. So if the two presenters think we're following directly from a written text, put your mind at ease—we're all ears instead.

But colleagues do have before them something from La Fondation Diane Hébert. It's a history of the foundation that's available in both languages and that's part of your package, but it's not from that material that Madam Isabelle Gendron will be making her presentation. Am I correct? Good.

[Translation]

Ms. Gendron, you have the floor.

Ms. Isabelle Gendron (Executive Director, Fondation Diane Hébert): Thank you. Good morning, Mr. Chairman, ladies and gentlemen.

I've come here mainly to discuss the Fondation Diane Hébert. This foundation was born out of the experience of Ms. Diane Hébert who, at the age of 25, was told that she would die if she did not receive a heart and lungs as soon as possible. Transplant programs were only in their infancy at the time, and she had to go to the United States for surgery. After having waited almost two years in California, she finally received her double transplant in Toronto. She was the first Quebecker to undergo such a procedure and her experience made the headlines several times.

She created her foundation in order to help other people in the same situation. The objectives of the organization are to help individuals awaiting a transplant or those who have received one by informing them about existing programs and providing them specialized medical material free of charge, by providing financial assistance for lodging, by producing a newsletter and, above all, by raising public awareness of organ donation.

It was 14 years ago this year that Ms. Hébert received the gift of life. She is still healthy and still just as grateful to the family that enabled her to see her daughter grow up.

Since that time, approximately 5,700 Quebeckers received donated organs. Most are still alive, thanks to the anti-rejection drugs that have been put on the market.

I do not wish to repeat what my colleagues have said.

The Chair: Don't worry if there's any repetition, because good news is always nice to hear.

Ms. Isabelle Gendron: In the documents I received from Parliament, I read that there was a project underway to create a national register for organ donors. Organ donation is a decision made in a thoughtful manner. If it has to be recorded in a national register to be valid, we agree that this should be the way to proceed.

Many Canadians die waiting for us to react. The creation of an official database to identify donors would enable every Canadian to express his or her wishes and make it possible to establish statistics on the actual number of donors. Voluntary registration will give certainty to the stakeholders about the willingness of each donor and will certainly increase the number of donors. A trial period for such a register would be the best way to test public reaction and would allow us to evaluate the results. We lose nothing by trying, except a few lines on a tax form.

In closing, I congratulate the members of the committee for their initiative aimed at consolidating the situation in Canada on this major topic and to encourage Canadians to exercise their right to participate in this gift of life.

The Chair: Thank you very much.

[English]

Now we'll go to Mary Ellen Gurnham. Mary Ellen Gurnham comes from faraway Nova Scotia. Welcome to Ottawa. Go ahead, madam.

Ms. Mary Ellen Gurnham (Nursing Director, Queen Elizabeth II Health Sciences Centre): Good morning. Thank you very much for this opportunity.

I work with the multi-organ transplant, bone-marrow transplant, and the regional tissue bank situated at Queen Elizabeth II Health Sciences Centre in Halifax. I think we're in somewhat of a unique position, in that we provide the only solid organ, cornea, and bone marrow transplant program in the Atlantic region. Our tissue bank is also one of the most comprehensive tissue banks in Canada.

• 0930

I've organized my presentation to talk about some of the factors impacting on the supply of organs and tissues as well as some of the recommendations we believe would help advance the cause.

We believe there are ineffective hospital practices with regard to donor identification, and I think you've heard that from the previous speakers. That's in part because health professionals are very reluctant to approach families. It's very hard to make a transition. You've been caring for a patient and family with a focus of trying to identify what's going on with them and offer some hope and cure. To make that transition then is difficult—to approach a family, even though you may believe in organ donation and how organ donation can help a grieving family.

There has been research conducted by the Partnership for Organ Donation involving Canada, the Netherlands, Spain, and the U.K. that has demonstrated this in terms of hospital attitudes and the lack of follow-through by hospital staff and the level of comfort they have in approaching families for organ donation.

I think this is related to the inadequate knowledge and support for health care professionals regarding donor identification, donor suitability, and also management. We sometimes, particularly in some of our smaller hospitals, lose donors because of the lack of knowledge of donor management, which is a very complex process.

There is also a lack of accountability and incentives for donor procurement. There is a shortage of specially trained health care professionals to support transplant programs, including ICU and peri-operative registered nurses, tissue bank specialists, information and data management specialists, and in some jurisdictions physicians and surgeons. There is lack of a national database, lack of national standards. Although there has been a lot of work done to develop standards, they are not yet implemented and there is no guarantee of consistency across the board in approaches by different programs.

Recognition for donor families has already been mentioned, and coordinated funded bereavement programs for donor families is also, I believe, an issue.

Some of our recommendations include investment of resources at the donor source, which includes ongoing education for health care professionals regarding donor identification, donor suitability, and donor management. In Nova Scotia in 1997 we had a fairly concerted campaign among the staff in the transplant program and the physicians, who did some speaking engagements in hospitals across the province, and we saw our donor rates rise dramatically. We had 133 kidney transplants that year, 89 of which were from cadaver donors; we also had 21 livers and 11 hearts. We have not been able to sustain that.

Other recommendations include counselling and role modelling on approaches to caring for grieving families, how to ask for donations, and how to do the medical and social screening, which is very comprehensive and involves asking some very personal questions at a time when families are grieving.

Another recommendation is appointment of physicians and nurses in community secondary and tertiary hospitals who would champion and be accountable for organ and tissue donation. These individuals could be a resource to staff; they could be called in to actually do the consent and the medical and social screening, so that the families are approached by someone who has the knowledge, comfort, and expertise to do this work.

Other recommendations involve a focus on recruitment and retention strategies for ICU and peri-operative nurses, and development of funding for accredited post-diploma or degree programs to train transplant coordinators, tissue bank specialists, and others specifically in donor criteria, management, organ profusion, tissue retrieval, and processing. We have actually had to send our tissue bank specialist away to the States for some training. There are no programs in Canada, and there are really no programs that focus in on the roles of transplant coordinators either. It's all in-house, which I think creates to some degree a lack of standardization.

Development and ongoing management of institutional databases is another issue. We believe there need to be processes to track, audit, and report upon the rates of actual to potential organ and tissue donors at the hospital, provincial, and national levels. These processes could be integrated in the Canadian Council on Health Services Accreditation and would provide feedback to health care professionals, administrators, boards, and governments on the effectiveness of institutional practices. I'm not convinced that our current practice of looking at donor rates per million population really captures what is actually happening out there.

The establishment of a national registry of organ donors may provide useful data to target groups for education. The information provided in the registry would support health care professionals in approaching donor families if that information were available to coordinators and the ICU or emergency department teams on a real-time basis.

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We don't believe the information should be used to override the wishes of families. If it's there, though, it can often be a vehicle to approach families to say that the husband, for example, has signed his donor card, because oftentimes we find families do not discuss these issues among themselves.

The establishment of a real-time national waiting list is required and would support programs in the allocation of donor organs. The Canadian donor coordinator role is to ensure all donated organs are placed within the Canadian system, utilizing the resources available to them. If there is no national waiting list, the coordinator is then required to call all Canadian centres. However, one can't confuse the national waiting list with the national sharing agreement.

There is a national sharing agreement between liver transplant programs. There presently is an understanding in relation to the sharing between heart transplant programs, but there is no national agreement. There is no national sharing agreement for kidneys. Most programs do support sharing of organs for high-status, critically ill patients; however, due to the extremely long waiting lists in larger provinces, smaller programs may be disadvantaged if sharing was expanded to less critically ill patients. For example, if Ontario has 150 patients waiting for livers and Nova Scotia has 20, Ontario will obviously come up more often in the queue. Should Nova Scotia be required to defer organs to Ontario? Should we be disadvantaged due to Ontario's longer waiting lists and lower donor rates? We think more efforts should be invested in increasing donor rates, rather than expanding sharing agreements to include low-status patients.

There is a need for programs to recognize and support donor families. Donor families can be very powerful advocates for transplantation. Currently, families are recognized in writing from individual programs. The Canadian Association of Transplantation has supported an initiative in which medals can be presented to donor families. This has focused mainly on organ donors, so we believe a national federal program recognizing organ and tissue donors and their families is warranted.

In Halifax, we have had many donor recognition events. I have been absolutely amazed at the importance of these events for donor families, and how far they will travel to come to these events. They come to Halifax from P.E.I., from New Brunswick, from Cape Breton and from Newfoundland. It has been very moving, but I think we can do better. We do not have the resources to provide ongoing bereavement support for these families, and I think that is a real need.

There does need to be separate, non-portable funding to support transplantation activities and technology development. In Nova Scotia, the funding for transplantation is vested in global hospital budgets. Particularly in Atlantic Canada, I believe there is a need to develop a regional, interprovincial approach to donor procurement, management, retrieval, public and professional education, quality assurance, transportation of teams, and interprovincial cost-sharing. We do have good relationships with our colleagues in New Brunswick and in Newfoundland, but we really don't have a formalized structure or process. It's something I really think we can improve on, and we have started some initiatives to try and move in that direction.

Support and funding for the implementation of national standards, and an accrediting process governing organ and tissue donation and transplantation are required. The need for standards and an accrediting process has been highlighted in the proliferation of both U.S. and Canadian private tissue banking and processing centres within our health care system.

In summary, I guess I would like to say that all of the issues I raised are important, but if I'm to leave one message with you, I really do believe—and so do my colleagues—that putting resources into ongoing education and support for front-line health care professionals to prepare them in approaching donor families will significantly improve donor rates. We need to keep the level of consciousness for organ donation up there in people's minds.

Thank you.

The Chair: Thank you, Madam Gurnham.

I'll go immediately to opposition questions, beginning with Dr. Keith Martin.

Mr. Keith Martin (Esquimalt—Juan de Fuca, Ref.): Thank you very much, Mr. Chairman.

[Translation]

Thank you very much for agreeing to appear before our committee.

[English]

Monsieur Tremblay, what a brilliant idea to honour the donors in such a poetic and moving fashion. I hope what you have done in Quebec can be translated to the rest of the country, along the lines of what Mrs. Gurnham mentioned. I think that would be really outstanding.

I have a couple of questions. Monsieur Tremblay or Monsieur Langlais, one of you mentioned the stickers that people have an opportunity to put on their health cards. Can you tell us how many opportunities people have to actually put those stickers on their health cards?

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Secondly, I wondered if any of you were aware of the Philadelphia experience, the Delaware Valley experience. Their organ donor rates have far exceeded the Spanish experience, and they're adopting that program throughout the United States. I think that would be very useful.

To Mrs. Gurnham, are you aware of or do you know of the difficulties to test for potential donors, particularly those who are potential donors for marrow?

Finally, when you mention that we have to have individuals within hospitals who have the capability and ability to approach families in a sensitive fashion, would it be fair to say that these are not new positions, but are people who have existing positions within hospitals and who have extra training that gives them the capability to do this?

Thank you very much.

The Chair: To whom did you want to direct those four questions?

Mr. Keith Martin: As I said, Monsieur Tremblay or Monsieur Langlais for the first question about the sticker on the health card. On the Philadelphia experience, it was to anybody who might be aware of that. And the last question was to Mrs. Gurnham.

The Chair: I would advise the witnesses that if there isn't enough time left in that time slot, I'll give you an opportunity a little later on, so don't feel rushed.

[Translation]

Mr. Tremblay.

Mr. Richard Tremblay: Mr. Chairman, here are the stickers that we are currently distributing in Quebec and that are placed on the health insurance card. They are extremely successful right now and allow rapid identification of individuals who have authorized organ donation. In Quebec, this is working very well.

We tell the public often that those who place the sticker on their health-insurance card should discuss it with their family to notify them that they want to donate their organs.

Perhaps you have other comments.

Ms. Isabelle Gendron: Mr. Chairman, the pamphlet Mr. Tremblay has shown you is distributed systematically whenever the health- insurance card is renewed in Quebec. Moreover, all members of Info don d'organes distribute it. The Fondation Diane Hébert distributes approximately a 100,000 per year in addition to those distributed by the Canadian Association of Organ Donation and other organizations.

[English]

The Chair: What's the return rate? You get rid of 100,000 per year, but how many come back?

[Translation]

Mr. Donald Langlais: Every individual in Quebec receives this document or is asked to sign it. There is no return formula to indicate whether people signed it or. We don't have that kind of accounting: I send 100,000 and 80,000 or 20,000 are sent back to me. We presume that the people who agree to organ donation will sign. The wording that appears here is in fact quasi-legal: “I declare that I am willing to make an organ donation”. This is virtually a will that has been analyzed from a legal standpoint.

To answer your question, distribution does take place, but we don't have that kind of accounting.

The Chair: Mr. Tremblay.

Mr. Richard Tremblay: To complete the answer to the question by the member, the monument that you see here lists the names of over 600 Quebeckers and Canadians who have donated an organ. This ceremony takes place once a year, in September, and is attended by 2,000 to 2,500 people. They receive a scroll from the hands of His Excellency the Lieutenant Governor who pays posthumous tribute to the donors. This is very well perceived by the public, and especially highly appreciated by the families.

The Chair: Mr. Tremblay, could you circulate your document?

[English]

I have about a minute left for Mary Ellen Gurnham. Did you want to respond to that question regarding the Philadelphia experience?

Ms. Mary Ellen Gurnham: Actually, I'm not familiar with the Philadelphia experience, but I am familiar with the model that has been used in Wisconsin. I don't know if it's the same kind of process, though.

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Mr. Keith Martin: Howard Nathan is the one who has been a spearhead of that. It's called the Delaware Valley experience in Philadelphia.

Ms. Mary Ellen Gurnham: No, I'm sorry, I'm not aware of it.

The Chair: It's not the bone marrow?

Ms. Mary Ellen Gurnham: In terms of the problems Canadian Blood Services is having in—

Mr. Keith Martin: It has come to my attention that there are a few people who had needed marrow, and people had volunteered to get tested, but the Canadian Blood Services didn't have the money to test the potential donors.

Ms. Mary Ellen Gurnham: I'm not aware of that. It has not been our experience in Halifax. We have not encountered that problem.

Mr. Keith Martin: Thank you.

[Translation]

The Chair: Ms. Picard.

Ms. Pauline Picard (Drummond, BQ): I'm very pleased that you agreed to participate in the health committee's study of organ donation. Hello again, Mr. Langlais; I'm very happy to see you again.

What is the link between the Canadian Association of Organ Donation and Québec-Transplant? You seem to be very well established in Quebec, but does your role include work in other provinces?

Mr. Richard Tremblay: We have very close ties with Québec- Transplant. For organ transportation, we receive calls from the coordinator of Québec-Transplant who tells us, for example, that they need five units for such and such a hospital centre, that we should go and get such and such a team. You need one transport unit for each organ. A unit must therefore go to the Institut de cardiologie to get a heart, another goes to get a liver and the other the lungs; the unit changes for each organ. Our link with Québec-Transplant is therefore obvious.

We have established these 11 units in Quebec only. We mentioned in our presentation that we hope that this kind of humanitarian work could be done in other provinces of Canada. We believe that this commitment by police officers—I myself am a police officer—is quite exceptional, because they are available 24 hours a day all year round. And I would like to announce, and this is a first because we only found out yesterday, that the RCMP has just associated itself with our Chicoutimi unit for organ transport.

We serve all the recognized harvesting centres in Quebec, from Chicoutimi to Quebec City, Sherbrooke and Montreal. The RCMP has just joined us and the Chicoutimi police force to adequately serve this large region where we lack volunteers to carry out the numerous transport runs.

We therefore receive calls from Québec-Transplant. I myself was president of that corporation. We are very well established in Quebec and we are considering establishing this kind of activity in other provinces in the coming years.

Ms. Pauline Picard: You must have an administrative centre in order to receive requests from Québec-Transplant. How are you funded?

Mr. Richard Tremblay: We are funded by corporations and mainly by significant fundraising. As I already mentioned, we also receive significant assistance from the Mutual Group of Canada, which enables us to fund our units throughout Quebec, as well as from the Canadian Tire Foundation of Quebec.

We receive no government aid in Quebec; we self-finance our activities. Since 1987, our trucks have been on the road night and day, 24 hours a day. We distribute units to police forces who agree to sponsor them and we pay for the cost of gasoline, which represents an expenditure of approximately $25,000 a year. All this is funded by the Canadian Association of Organ Donation. The unit vehicles are police emergency vehicles equipped with blinking lights and sirens which enable us to get quickly from point A to point B, to provide airport links from one hospital to another and to transport organs and especially medical teams to their destinations.

Ms. Pauline Picard: Mr. Langlais, were Québec-Transplant and the Canadian Association of Organ Donation founded following the study by the Quebec Ministry of Health? Did you participate in this study and if so, did you make recommendations at the time?

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Mr. Donald Langlais: I did not take part in Mr. Gélineau's study. It must be pointed out that Québec-Transplant existed when Mr. Gélineau presented his report. Essentially, there was a problem with organ transplants in Quebec. The ministry gave Mr. Gélineau and his team a mandate to conduct a study on the overall situation in Quebec and to try to determine whether certain adjustments could be made.

As I said earlier, public awareness was handled more by organizations such as Canadian Association of Organ Donation, the Fondation Diane Hébert and others. Québec-Transplant was asked to focus mainly on the issues we discussed earlier, namely training and education of hospital staff, among other things, and ensuring liaison with those in charge of recruitment. Therefore, in that sense, I did not take part in that work. In a way, I'm the one who is implementing all these elements.

Ms. Pauline Picard: All right.

Mr. Donald Langlais: Of course, the foundation that exists, such as the Fondation Diane Hébert, the Kidney Foundation, the Canadian Association of Organ Donation and others are organizations that were created when the importance of everything surrounding organ donations was first noted. This was done following experiences like that of Mr. Tremblay, who took this to heart at some point and said that something had to be done.

They had some good expertise, such as the ability to quickly transport organs within Quebec, because timing is always an issue in transplants. At that time, we felt this was a very interesting notion that would help us enormously.

Ms. Pauline Picard: Very well.

The Chair: Briefly, Mr. Tremblay.

Mr. Richard Tremblay: Ms. Picard, I did participate in the birth of Québec-Transplant and the Gélineau Committee. Québec- Transplant used to be called Métro-Transplantation. It became Québec-Transplant with the committee headed by Dr. Roberto Iglesias who had been appointed at the time by the Minister of Health to oversee the creation of Québec-Transplant.

I can tell you that organizations such as the Fondation Diane Hébert all appeared before the Gélineau Committee to explain what the problem was. When we established the Canadian Association of Organ Donation in 1984, we felt it was totally unacceptable that human organs be literally lost in taxis or ambulances transporting surgeons. Imagine that you're a doctor with a medical team, carrying a little icebox containing a human organ that must quickly get from point A to point B. It was really not well organized and police officers who had the necessary expertise to do this were available.

[English]

The Chair: Mary Ellen Gurnham, you started off by saying that yours is the only transplant organization in all of the Atlantic provinces. Do you have a collection system? That's probably the wrong term. Do the Atlantic provinces have an organized system like the one Mr. Tremblay is describing? Is there anything similar?

Ms. Mary Ellen Gurnham: No, not to that degree. We use a lot of planes, because we have to fly teams to do retrievals. The transplants are all done in Halifax, so the patients are brought to Halifax. If they're kidney patients, there's usually enough time for them to actually come from their homes. If they're liver or heart patients, they are actually in Halifax, with pagers, waiting for transplant. For the most part, we use planes and we use ambulances to transport the teams, but it's not as coordinated.

The Chair: That's to transport the teams.

Ms. Mary Ellen Gurnham: Yes, and the teams then bring the organs back.

The Chair: Okay, so you're transporting retrieval teams into various places in Atlantic Canada, as well as transporting potential transplant recipients.

Ms. Mary Ellen Gurnham: Yes.

The Chair: Who pays for all those transportation costs?

Ms. Mary Ellen Gurnham: The transport of teams is paid through the global hospital funding. The transport of the patients is paid for by the patients themselves.

The Chair: Okay, thank you.

[Translation]

Mr. Richard Tremblay: Mr. Chairman, we regularly meet doctors from Halifax at the Jean-Lesage airport in Quebec City, or in Sherbrooke or Montreal. Our organ transportation units and our police officers go to pick up the doctors from Halifax to drive them to a hospital, wait for them, and drive them back to the airport with the donated organ to catch their plane to Halifax.

• 0955

[English]

The Chair: But the coordination for all of that begins and ends with the transplant centres. So it would be your....

[Translation]

Mr. Richard Tremblay: We operate solely in conjunction with Québec-Transplant. It handles the coordination with the people in Halifax.

The Chair: Thank you.

Ms. Caplan.

[English]

Ms. Elinor Caplan (Thornhill, Lib.): I was interested in the discussion from the Maritimes about the need for a national waiting list, and the discussion of how sharing agreements work. We heard from a witness from Halifax that in fact we have a national waiting list today that is threatened with disappearing. Are you familiar with the national waiting list that's in place today and the problems of that national waiting list?

Ms. Mary Ellen Gurnham: Is that the waiting list that MORE has produced, for the status three and status four patients, the critically ill patients? Yes, I am.

Ms. Elinor Caplan: Could you give us your perspective on what the problems are?

Ms. Mary Ellen Gurnham: It's my understanding that MORE has really done this out of the goodness of their hearts, and that they are not prepared to continue to do it. They want a different structure and different kinds of support from the other transplant programs in order to continue. That's my understanding of what the issues are.

Ms. Elinor Caplan: When you say the goodness of their hearts, do you know how long this has been in place?

Ms. Mary Ellen Gurnham: I couldn't say specifically how long it's been in place. It's been a number of years. But my understanding of what the issues are—and I'm not on the ground floor dealing with this on a day-to-day basis—is that they were finding it very expensive to continue to maintain and they wanted to try to put in a different kind of process.

Ms. Elinor Caplan: That was a sharing process, where all of the centres would share the cost of doing it?

Ms. Mary Ellen Gurnham: Yes.

Ms. Elinor Caplan: Is it your understanding the other centres didn't want to participate?

Ms. Mary Ellen Gurnham: I don't think there was consensus from all of the other centres in terms of how this should happen, or on the dollars required to sustain it.

Ms. Elinor Caplan: So my question is if you're calling for national standards, sharing agreements, and waiting lists, are you suggesting this all be imposed, since there seems to be difficulty in getting consensus among the centres at this time? How would you suggest we go about trying to develop your recommendations?

Ms. Mary Ellen Gurnham: I think there already is a process in place that has developed national standards, and I believe for the most part those standards have been approved by the various stakeholders and committees.

Ms. Elinor Caplan: But you said—actually, I wrote it down—there's no consistency in how they're applied and there's no accountability.

Ms. Mary Ellen Gurnham: Not at this point in time, because—

Ms. Elinor Caplan: How would you suggest we do that?

Ms. Mary Ellen Gurnham: Those standards have not yet been implemented.

Ms. Elinor Caplan: Why?

Ms. Mary Ellen Gurnham: It is because they're still in draft form.

Ms. Elinor Caplan: Who's drafting them?

Ms. Mary Ellen Gurnham: I know André LaPrairie has been heading up the process, and there have been a variety of committees and subcommittees looking at standards for overall organ transplantation, tissue banking, and blood.

Ms. Elinor Caplan: Is it your suggestion that the accountability mechanism be through accreditation?

Ms. Mary Ellen Gurnham: Yes. I believe we need to move to an accreditation-type process for transplant programs so we can ensure consistency of standards.

Ms. Elinor Caplan: Is there any reason the association for hospital accreditation couldn't do that today? Do you know why it hasn't been done?

Ms. Mary Ellen Gurnham: I don't think there's been any request to them, and I don't think, in the absence of having agreed-upon national standards, there's been a standard by which they could then measure. It's my understanding that the committees that have been working on the standards have approached the Canadian Standards Association to help do the auditing process for the standards.

Ms. Elinor Caplan: Do you think there should be a requirement for all the centres to share data and information to make that available, and if so, by whom?

Ms. Mary Ellen Gurnham: If you're going to set a standard and you're trying to develop a national approach, then it's difficult to do that if there isn't some level of requirement. Theoretically, there is not a requirement for hospitals to be accredited by the Canadian Council on Health Services Accreditation.

Ms. Elinor Caplan: That's my next question.

• 1000

Ms. Mary Ellen Gurnham: However, their funding and their ability to be maintained as teaching hospitals is indirectly tied to the fact that they are an accredited hospital. So I think there are other ways to provide incentives for transplant programs to buy into this. I would expect the majority of transplant programs—I couldn't say all of them—are part of teaching hospitals and teaching programs. I think there are already mechanisms in place to encourage programs to participate in the process.

Ms. Elinor Caplan: So we're talking about an encouragement, a consensus-building model, as opposed to.... Your advice is to not attempt to impose something?

Ms. Mary Ellen Gurnham: I don't think that has been the way we've gone about it in other practices. I would be surprised if there wouldn't be buy-ins, though.

Ms. Elinor Caplan: There have been suggestions for a national agency.

The Chair: You can come back on the next round.

Monsieur Langlais, is your organization part of that team to which Mary Ellen Gurnham made reference regarding the development of national standards?

[Translation]

Mr. Donald Langlais: I explained earlier in my presentation that, like all the other transplantation programs in Canada, I believe, we took part in studies such as “Standard for Perfusable Organs: Canadian General Standard and Safety of Organs and Tissues for Transplantation”. It sets out standards designed to ensure the safety of transplants. In other words, we do not want to give people diseases such as HIV. So standards have been established.

Ms. Gurnham was saying that at the moment we cannot be sure that each province or each program applies these standards to the letter. When we get an organ from Ontario, we ask the coordinators of the transplantation programs to provide epidemiological, serological and blood-typing data. Quebec is one of several provinces that requires some tests. However, I cannot be sure that the same tests are done in the Atlantic provinces or elsewhere.

Let me give you an example. P24 is a biochemical test that shows whether an individual is a potential HIV carrier. For the last two years, this test has been done automatically in Quebec, as far as I know. I'd have to check whether tests of this type are required in all programs. That is where the problem Ms. Gurnham mentioned occurs—ensuring that standards are established, applicable and applied by everyone. If that were the case, we could really guarantee high quality organs at the national level that could be transported between provinces.

[English]

The Chair: In your recommendation four, on page 25 of the English version of that report, the committee recommends the blood product procurement agency be assigned responsibility for quality control—the preservation and distribution of tissue, in particular bones, cardiac valves, eye tissue, and skin. Did the committee make that recommendation because of what you've just said about the need for that coordinated system and the establishment of those kinds of standards, whether they be through accreditation or other vehicles, or did you envisage some other way of the mechanics of this?

[Translation]

Mr. Donald Langlais: There are no miraculous solutions to this. Once the standards are established, the main thing is to apply them and to require—through accreditation or otherwise—that they are followed. That is the important point. How will this be done? Will we work from consensus? I have no opinion on that.

[English]

The Chair: Okay.

Madame Wasylycia-Leis.

Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP): Thank you, Mr. Chairperson.

I'd like to follow up Elinor Caplan's questioning. Actually, I'll turn it around and get at it from a different way, and ask Miss Gurnham about the whole question of standards. It seems to me we have, as you've indicated, draft standards. There's been a lot of participation by all the participants, all the organizations and bodies involved. We have the authority right now under the Food and Drug Act for the government to act. My question to you would be not why haven't the hospitals or other organizations acted, but why hasn't the federal government acted?

• 1005

Ms. Mary Ellen Gurnham: I don't know that I'm in a position to answer that question. I would say, however, that I do believe individual programs have acted. We have all had access to the draft standards, and we have, at least in Halifax, started working on meeting the standards in areas where we are not meeting them. We have implemented a comprehensive medical and social screening tool that we use for all organ and tissue donors. But we have no guarantee, as Mr. Langlais just said, that the same processes are in place across the country. I think that's part of where an accreditation process would come in to help us assure that. I think individual clinicians want to ensure patient safety. They need the support and resources in order to do that.

Ms. Judy Wasylycia-Leis: Let me just follow that up with Mr. Langlais. In your report you also talk very clearly about national standards and call for an immediate drafting and tabling of such national standards. Again, it seems to me a lot of work has been done, and this matter is before this committee, as it has been before many other committees. What's it going to take for us to get something to happen on this front as quickly as possible?

[Translation]

Mr. Donald Langlais: I hope we don't have to wait until accidents of the type we saw with the blood system happen before we get a set of standards.

In Quebec, standards are respected at the outset, and we go one step further as regards the whole sociological background of our client population. For example, we realize that people with tatoos could cause some problems. We share information on our experiences in Quebec with the other programs. In the case of the sociological questionnaire that we give donor families to make sure there are no specific dangers the issue is to determine whether the other programs will introduce a similar questionnaire. Will they follow our example, because our experience with the questionnaire has been positive? That we do not know. That is why I say we have to find the right approach. Is hospital accreditation what is required?

The Quebec College of Physicians will be responsible for evaluating the quality of medical procedures. When it studies transplant and retrieval files, it will check whether all the elements required for safety are in place, whether they have been properly administered and whether the correct results were obtained—that is, that the transplanted organ met the requirements and was not one that should not have been transplanted.

At the moment, each program looks after standards for its own area. In Quebec, the College of Physicians has this responsibility, and I believe it has established a committee to set up some objective criteria for determining that all the required information is in the file.

We need some way of ensuring that everyone agrees that a certain minimum standard is required. We have a problem in this regard at the national level.

At the moment, it is up to individual programs to accept and apply these standards or not. All of the programs are working to determine the lowest and the highest level of standards.

[English]

The Chair: Just before I go to the next questioner, I want to remind all members that House leaders are anticipating a vote in the House any time now. We will probably be interrupted by bells. Please don't feel uncomfortable as a result. They will be half-hour bells, and we've agreed that five minutes before the end of those half-hour bells we will interrupt our hearings, if it should happen while we are still here.

Madam Minna.

Ms. Maria Minna (Beaches—East York, Lib.): Thank you.

This morning we've talked about national accreditation. We've talked about national standards to ensure the quality of organs coming from other parts of the country that may not have national registries, and so on, and the fact that there have been attempts to establish these standards, or they are being drafted. But there seem to be a lot of things happening in different parts of the country at different levels and in different areas.

• 1010

I would like to ask two questions. One, would it help for a body, and presumably the national government, to be seen as a coordinating body that could call together a national forum with all of the experts in the different fields of this area to discuss starting something? The other question is if this isn't the appropriate role, then what should be the role of the federal government? We've seen across the country, I get the sense, a lot of struggling going on. Now we are having hearings and this is a national standing committee.

What role do you see for the national government? Secondly, do you think that having a national forum on this issue would help to pull together some of this stuff?

The Chair: You can all answer it if you like.

[Translation]

Mr. Donald Langlais: I believe the creation of a forum or any other entity that brought together all the experts to establish standards would be a very interesting step. How could the federal government do that? I am not familiar with all the workings of the federal government, but I think there are a number of forums in which a consensus could be reached. There are forums in which people meet to establish and recognize all these standards.

Let us look at the whole issue of blood. At the moment, Quebec has Héma-Québec, while the rest of Canada has a different model. However, I am sure that the two blood agencies have the same quality standards. It is quite clear if Quebec had some specific blood requirements as of tomorrow, we would proceed in the same way as we do in the case of organ donation. We get organs from other provinces, and the other provinces get organs, as well as blood, from Quebec.

So I'm sure there are some forums within which these standards could be established and recognized. Do we need to formalize this through legislation or otherwise? I don't think so, because that would become quite cumbersome, but the federal government could certainly help out, could be the facilitator, and, if necessary, play a leadership role in this effort. Subsequently, however, it would have to turn the responsibility over to provincial officials. In addition, as Ms. Gurnham was saying quite clearly earlier, it will have to identify problems at the national level. If, somewhere in Quebec, an organ was received that could be contaminated and this is realized three weeks later, we have to be able to determine who received the organ and what the consequences are. So there has to be an immediate operational connection. We need a framework somewhere to establish procedures of this type.

The Chair: Mr. Tremblay.

Mr. Richard Tremblay: I fully support Mr. Langlais's approach.

The Chair: Ms. Gendron.

Ms. Isabelle Gendron: I too support his approach. In any case, the Fondation Diane Hébert does not handle this aspect of organ donation in Quebec.

[English]

The Chair: Madam Gurnham.

Ms. Mary Ellen Gurnham: In relationship to the standards, I would suggest that you look at what process has already been put in place to develop the standards, because I believe there has been a lot of work done and a lot of stakeholder involvement from across the country in the development of those standards.

I'm not convinced a national forum is going to help advance that unless there was a specific gap in the process of standards development that a national forum could help meet. I think what is required in terms of support from the federal government is to establish the infrastructure to help implement and audit the standards. It's one thing to have the standards agreed upon; it's another thing to have them implemented, audited, and assessed to make sure that programs are applying them in the way they're meant to be applied.

Ms. Maria Minna: Or actually get to the point that would....

Ms. Mary Ellen Gurnham: Or look at agencies that already exist within health care to actually implement standards and to audit them to see if we can build upon or use those mechanisms and processes.

I think the federal government has to set up an expectation for the standards to be met. I think that is a role, but then there has to be a process to support that. I think that's where the work really needs to happen now.

The Chair: Mr. Elley.

Mr. Reed Elley (Nanaimo—Cowichan, Ref.): Thank you very much, Mr. Chair.

Once again, welcome to our committee. We appreciate very much you coming today.

More people are beginning to know this, but I have a daughter at home who is eight years old who was born with one kidney. That kidney is diseased. If the kidney continues to deteriorate, then of course the only logical lifesaving operation for her will be a kidney transplant. So my interest in this is far more than academic. I have a big stake in this for my family, for my daughter.

• 1015

I get very upset when I hear about people saying let's have another national consultation. We've consulted this whole issue to death. If we consult it more, it won't be just the issue that goes to death, it will be many more people like my daughter who will go to death. So let's not have any more national consultations. Let's do something about this problem. We've been talking about it now, nationally, for nine years, I think.

It seems to me a very simple matter that we can get national standards. They're already there. They can be developed. We have the infrastructure; it's there. It's in our hospitals, it's with our medical professional people. What's the big problem? Why do we have to keep talking about this? Why can't we just do it? We know there's a role for the federal government, but surely it's on the local basis that we have to get our act together.

Mr. Langlais, I read in your document where you said that in Quebec there is in every hospital centre one person appointed to take charge of the process of recruiting potential organ and tissue donors. We've heard many witnesses come to this committee saying this is one of the problems, that across the country there are uneven appoaches to this, so that many potential donors slip through, because there aren't those people in place at the local level to actually at the time say to people, in a gentle and kind way, this would be a wonderful thing.

Mr. Langlais, if this is in place in Quebec, has it indeed increased donor donation? And if it hasn't, why not? Maybe you could just answer that question first. I have a few others.

[Translation]

Mr. Donald Langlais: We must remember that these individuals were appointed just a year ago. So we will have to see what sort of results this approach produces.

However, we do have very specific experience with the hospital at McGill University, where a full-time employee does this job. This year, there has been a significant increase in organ donations at this hospital. As I was saying, we have to be careful when we look at this increase in the number of donors. If you look at the figures for just one year, they are not conclusive. We need to see the results over a two or three-year period.

However, this year, we tried to identify the people with this responsibility and we spoke to them at meetings. It can be said that Quebec has never had as many donors. Is there a connection between the two facts? Once again, I prefer to be very cautious. I think we will have to wait a year or even two or three years before we really see the effects of this new approach.

One thing that is clear, and the committee has no doubt heard this frequently, is that this has to be done in hospitals, people have to be appointed to do this job and we have to develop ways of following up the potential donor, as I was mentioning before. We should avoid not identifying donors. Once they are identified, there is a whole process that must come into play. I would go so far as to say that expertise is required as well for those who work with the family.

Québec-Transplant can help all Quebec hospitals when they find themselves in this situation. There must be good relations with the family. However, I think that the appointment of these individuals to take charge of the recruitment of potential donors, together with a good team of professionals, could have a positive effect on the number of donors. That is an interesting approach.

[English]

The Chair: You can come back again, Mr. Elley.

Mrs. Redman.

Mrs. Karen Redman (Kitchener Centre, Lib.): Thank you, Mr. Chair.

Some of the most moving witnesses we had testimony from were parents of children who were waiting for organ donor transplants. I take under advisement a lot of the great suggestions that have been unveiled here today, but it strikes me that a public awareness education campaign is pivotal in the overall background of having Canadians step up and not only offer to be donors, but also to be more receptive to the kinds of interceptions that may be made at a time when they're very sad.

• 1020

There are a couple of really good suggestions. I'm wondering, as a national government, how we provide leadership and maybe give a step up but also get out of the way. There are some national organizations that do a very good job. I wonder if any of you would like to comment on what the optimal role of the federal government would be in engaging those groups that I think are already doing a very good job.

The Chair: We'll start with Mary Ellen Gurnham.

Ms. Mary Ellen Gurnham: To support the work they're already doing and to recognize and value them for the work they're doing would be one step, and perhaps in some way to make ongoing statements about the importance and value of organ and tissue donation.

I keep hammering on the tissue donation because I think it's a piece that gets lost. For example, in Halifax we have a waiting list for cornea transplants that is at least 200 people. We are not getting the number of corneas that are available because we don't have well enough developed hospital development programs to go out and do that. I think there is a need for more public education there, because I think it's one area that people, when they sign their donor cards, very often have an emotional response to.

I think money will always be an issue in terms of the money that's required to mount some of these campaigns. In our hospital budget we have no money for public awareness. We do that based on fundraising and from donations from corporations and from some of the companies we interface with. The Mutual Group every year during the transplant week does a very good job at generating some media press to support some of those initiatives.

The Chair: We were just discussing up here at the table how we thought we had presenters earlier on who gave some indication that in some parts of Canada there is a surplus of corneas. But you're telling us there is a deficit—

Ms. Mary Ellen Gurnham: In Atlantic Canada.

The Chair: —in Atlantic Canada. Some coordination probably would be helpful. I don't mean that in a wry sense, but like every other member on a committee I'm trying to put my head around what the problem is. We've learned that for some tissues and some organs in some places there's a surplus, and yet there's a crying deficit in other places. At least one province came before us that is now in a situation where it must export outside Canadian boundaries any of its organs because it can't access lists locally.

I'm sorry to cut into your time here, and I won't, but—

Ms. Mary Ellen Gurnham: If I could speak to that in terms of corneas, I know we had heard there was a surplus of corneas in Quebec, and when we tried to find out what the issues were so we could in fact purchase some of these corneas so we could offer them to our patients, in fact the surplus was that they recovered corneas that did not meet the criteria for donation for research purposes. So there wasn't a real surplus when we dug down and investigated further. But that gets back to having a consistency of standard for criteria, etc.

The Chair: Thank you very much.

Mr. Tremblay, do you want to answer Madam Redman's part?

[Translation]

Mr. Richard Tremblay: I'm totally convinced, Ms. Redman, that Canadians need more public awareness campaigns, not just one-week efforts. Under Bill C-202, which was passed in December 1996, Parliament decided that the last full week in April would be organ donation week. Talking about organ donation for just one week is not enough. We need to talk about it regularly. On the basis of my humble experience, I would say that when we establish public awareness campaigns during the national week or month, we see incredible results. Is that a coincidence? I have been working in organ donations for 15 years, and I have noticed that every time we step up our awareness campaigns, there is a much more pronounced reaction on the part of Canadians.

• 1025

I come back to the issue of recognition. I remain convinced that it must exist and be maintained.

We established a cenotaph and we will soon have a second one in Quebec. So there will be another ceremony. I have been a police officer for 27 years, and I have received medals in the course of my duties, for doing much less than what organ donors do. I have recommended that Canadian authorities, through their chancelleries, give out medals to each donor family. Mr. Chairman, you would be astonished to see how much this helps families cope with their grief.

People do not necessarily come to terms with their grief in the first hour after death or after the decision is made to retrieve the individual's organs. The grief often lasts much longer for the families.

I have received medals for doing much less, and I think Canadian officials should seriously consider presenting a medal in the memory of organ donors. The medal would be recognized and official and it would give the family official recognition.

In my career as a police officer, I did everything I could to deserve a medal, because I tried to do my job to the best of my abilities. However, these people give a gift totally anonymously, a gift for which they expect nothing, of course. They give part of themselves, because it is no longer of use to them. This is the greatest gift, and I think their gesture should be acknowledged at a very high level.

We must also continue our public awareness campaigns, not just one week a year, but throughout the whole year, as was said previously, so that organ donation becomes a natural reflex and the process becomes less complicated. This will help us save lives.

[English]

Mrs. Karen Redman: I appreciate that, and I would like to reiterate the fact that we heard from a doctor—I believe it was a Dr. MacDonald in Halifax—who said that we don't have the 40% turndown rate that the Spanish model has, that in reality we have a very good rate of having donor acquisition if we approach the people in the right way. I realize this is not a single problem; it is one of coordination and a multi-pronged approach. And I appreciate the opinions you've all brought to the table today.

The Chair: Mr. Martin.

Mr. Keith Martin: As my colleague Mr. Elley said, we don't need to study this to death any more. It has been a problem for a long time. The longer we wait the more people will die.

I'd submit to you that the public already supports what we're discussing here. Study after study shows that, and I think we need more opportunities to be organ donors.

I would submit to Monsieur Tremblay that with the card going out.... I don't know what happens in Quebec, but my health card has been sitting in my wallet for ten years, so it has been collecting dust. People need opportunity after opportunity, on a repeated basis, to be an organ donor. I'd like your opinion on that.

Secondly, to resolve the issue, Ms. Gurnham, on the fact that some provinces lack organs and others have them, perhaps a national database having organ donors would do that.

Lastly, because organ donation is a safe medical procedure, the committee should not be waiting to dot the i's and cross the t's on national standards without doing the two or three very simple things that we can implement tomorrow to radically increase the organ donor rate in this country.

The Chair: I gather that last point was not a question, Mr. Martin, so I'll go directly to Monsieur Tremblay for that first question, and then to Madam Gurnham for the second.

[Translation]

Mr. Richard Tremblay: It is true that many people have not used their health-insurance cards for a long time. That is why I was speaking earlier about an ongoing public awareness campaign on organ donation. We have to repeat the message constantly, and we must insist that families make a decision about organ donation. That is extremely important in order to avoid confusion and in order to allow hospitals to act quickly once the organ-donation card is produced. That is why we need not just a few annual campaigns, but also an ongoing public awareness effort about organ donation throughout the country.

• 1030

[English]

The Chair: On the second question?

Mr. Keith Martin: I just want to thank you, Mr. Tremblay, for emphasizing the fact that people have to speak to their loved ones when they sign their cards. Thank you.

Ms. Mary Ellen Gurnham: I think to some degree we have not addressed, as a country, the whole issue of tissue donation, which corneas would fall into. I think that is something we really need to move on and look at, the whole issue of tissues in terms of bone, skin. There are corneas. Bone marrow is also considered a tissue.

There is an ability to improve that if we have areas in the country that have surplus corneas and those of us who need them aren't aware of that. Again, there needs to be some sort of infrastructure built in so we that we can share information. Perhaps a national database on that would be useful. It would depend on how it's constructed and managed and maintained. But I think the whole issue of tissue donation and the distribution of tissues is something we really have not addressed, and it is something that does need to be looked at.

The Chair: Thank you.

Mr. Jackson.

Mr. Ovid L. Jackson (Bruce—Grey, Lib.): Thank you very much, Mr. Chair. I have only one question, probably for Dr. Langlais, but maybe the other guests may answer as well.

When I listen here, it would appear that somehow there's some angst about when you do actually retrieve organs, which takes a lot of hard work and has to be done in a timely manner, and so on. There's some concern with regard to patients, I think somebody mentioned, with tattoos, or they may have some ailment, and all of a sudden you do all this work and there's a patient receiving the organ, and now they end up with another disease.

Is there some kind of fear here that maybe there is not enough information when you retrieve an organ, or is there enough of a check to make sure that notwithstanding the fact that you're glad to get the organ, the organ in fact comes from a person who can be donated without the transmission of another disease?

The Chair: Mr. Langlais?

[Translation]

Mr. Donald Langlais: As far as Quebec goes, I can assure you that we comply with all the standards we helped established through our work on the national committees. I was saying earlier that we had even gone a little further by performing some physical examinations, for example in cases where people have tatoos. We ask the family of the potential donor to fill in a sociological questionnaire to ensure that there are no aspects of the donor's life that could provide contradictory information. Consequently, organ retrieval in Quebec is carried out as safely as possible in light of current scientific knowledge.

There was also a question as to whether these standards were followed in the same way in each of the other provinces. I think so, but I cannot state that categorically, because there is no authority that has laid down the minimum standards that everyone must follow.

I am quite sure that in Halifax or in Ontario, under the MORE program, all the necessary tests are done to ensure safe organ retrieval. However, once again, I have to rely on people's good faith, just as the people in Ontario say they are sure that we in Quebec are doing a good job. There is no place we can go to ensure that everything is done safely. I can say that our current practices in Quebec are very safe.

I am sure Ms. Gurnham will be able to say the same thing, namely that there is no one body officially responsible for compliance with standards.

• 1035

[English]

Mr. Ovid Jackson: Now what we've heard as a result of this is that accreditation is one form of doing it. Is there another forum that would help you work together to make sure that you not only have a standard, but the standard is quite high?

[Translation]

Mr. Donald Langlais: Work is going on at the moment, and the scientific community is involved in a number of efforts to establish standards for retrieval and other procedures. The federal government could support this work, through a secretariat or otherwise, to ensure that these committees exist not only because of everyone's good faith, but also to provide a place where people could get information quickly, by dialling a single number. That would be a huge step forward. At the moment, the committees are sometimes chaired by someone in Newfoundland, Vancouver, Quebec or Ontario, and there is no continuity. We have no guarantee of continuity. If we could get continuity, that would be a big step forward.

[English]

The Chair: Mr. Jackson, is that it?

Mr. Ovid Jackson: Yes, thank you, Mr. Chair.

The Chair: Madam Picard.

[Translation]

Ms. Pauline Picard: I would like to ask Ms. Gendron a question.

A number of witnesses have told us that signing the organ- donation consent form, on a driver's licence, for example, did not amount to informed consent. This practice is very much challenged by families, because they may not necessarily respect their relative's signature.

From your experience at the foundation, would you say that the sticker that people in Quebec currently place on their health- insurance cards, with the information it contains, reflects informed consent?

Ms. Isabelle Gendron: I could not tell you how donors are identified in hospitals, but from what I have heard, the family's permission is generally requested before anything is done. The stickers we distribute are actually designed more to promote public awareness. A signature on the sticker placed on the back of the health-insurance card is legally acceptable, but in practice, I think hospital officials generally ask the immediate family to sign the organ-donation authorization.

We send out a brochure to all Quebeckers encouraging them to discuss this issue with their next of kin so that these individuals know what their choice is regarding organ donation.

Ms. Pauline Picard: If I understand correctly, in the information you send out, you ask people who sign these stickers placed on the back of their health-insurance cards to ask their immediate family to sign as well.

Ms. Isabelle Gendron: Until April 1998, we distributed organ- donation cards. At the time people had to name two individuals who were aware of their decision; it had to have been discussed with them. In April 1998, the Ministry of Health and the members of Info don d'organes developed the sticker, because we realized that in practice, hospital staff had enough trouble finding the health- insurance card and even more trouble looking through personal effects to find the organ-donation card. This experiment did not work out very well.

Ms. Pauline Picard: The health card still exists. Whenever we go to the hospital or to see a doctor, we have to present our card. There are many people around who can see that a person has signed the card to indicate that he or she wants to make an organ donation. The family members cannot deny that the person signed the sticker.

Ms. Isabelle Gendron: That is correct.

The Chair: Mr. Langlais.

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Mr. Donald Langlais: I'll read you exactly was is written on the sticker:

I hereby consent to the removal, upon my death, of all my organs that are suitable for transplant.

This wording is similar to that of a will. I know that Ms. Gendron is not directly involved, because that is our job at Québec-Transplant. We could proceed without requesting the consent of the family, because the individual had signed the card, which is similar to a will. If we were to go to court, we would probably win.

However, we do not do that, and we always approach the family, even if the person who signed the sticker took the time to inform the family, because we need to know whether the person was still willing to make an organ donation. Might the person have changed his or her mind in recent months?

When the question is properly asked and the situation clearly explained, when there is a good team to support the family and help it deal with the various aspects of brain death, only about 10 to 15% of people say no. The others agree. The better the family is informed, the less they fear a declaration of brain death and the more likely they are to agree.

So our work with families is more social than legal in nature. Social factors do not play a significant role in refusals. Only 10% of people—not 50%—say no.

Ms. Pauline Picard: You spoke earlier about a sociological questionnaire you have families fill in.

Mr. Donald Langlais: When the coordinator of Québec-Transplant is on duty, he always starts by doing a series of serological, immunological and other tests, but he must also ask the families some questions and have the sociological questionnaire filled in. Families are asked some very specific, personal questions about the potential donors to determine whether there is anything that would make them unsuitable. The coordinator of Québec-Transplant asks the questions. In addition, the physician that is maintaining the person's life artificially is asked to do a very specific physical examination. We mentioned tatoos, because that is something very visible, but we also want to know why a person has needle marks on their arm, for example. In such a case, we would ask the family if they know about that. The family could say that the person had been given a particular drug. It's very important to know that.

Ms. Pauline Picard: Thank you.

[English]

The Chair: Ms. Caplan.

Ms. Elinor Caplan: Thank you.

I really appreciated the presentations of the panel today. We've heard a number of areas that I think will be very helpful to the committee in making our recommendations. One of the things I've heard, and we've heard repeatedly from other panels, is that this is a very complex area because it's a shared jurisdiction. I see heads nodding.

We've heard about public education. In the area of staff education, you mentioned the need for continuing education of the providers, particularly the doctors and the nurses, and I made a list of all of those who potentially have a role. I'd like you to each tell me who you think has the primary responsibility for continuing education of the doctors and the nurses. I'll start at the bottom of my list.

All of the doctors and nurses belong to professional associations. They are required to be members of colleges, the governing councils, the licensing and disciplinary bodies. If they work in a transplant centre they're affiliated with the university usually, as you said. It's a teaching hospital. There's a board that runs that university. There's also a board that runs the hospital. Then there's the province that funds the hospitals through global budgets, and then there's the federal government.

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Could you identify for me who you believe have responsibility for continuing education and training of the staff? Did I miss anyone on that list of possible people responsible for that area, which is a very important one? It seems to me the federal government's pretty far away from the role of the requirement for continuing education—yes or no? And who do you think, please?

The Chair: We'll start with Mr. Langlais, and I'll ask you to be brief when you give that response. Go ahead.

[Translation]

Mr. Donald Langlais: Having worked a great deal in hospitals, I would think so. The best experience and the best training are acquired on the job. That is where people become responsible. The university hospital which has a research and teaching mission, is the preferred place to offer training.

As we go higher up in the hierarchy of responsibilities, we see that the government probably has a role to play in the area of commitment. I used the English term, because I like it. The government must tell everyone that it recognizes the importance of this strategy and that it's prepared to help out in whatever way it can. I'm not speaking necessarily of money. We may be talking about other types of help. However, there is something that flows from this commitment, even though I think that the training will be provided at lower levels in the hierarchy of responsibilities.

In Spain, training is provided on the job, in university- teaching hospitals. That is where the responsibility...

[English]

Ms. Elinor Caplan: It's the responsibility of the teaching hospitals—

Mr. Donald Langlais: Yes.

Ms. Elinor Caplan: —and the boards of those hospitals to ensure that the staff are properly trained? Thank you.

Any other opinions?

The Chair: Madam Gurnham.

Ms. Mary Ellen Gurnham: I think the staff of those teaching hospitals is the responsibility of the hospital and the board. However, not all donors come from teaching hospitals. I think the issue is if you have, in Neil's Harbour, for example, a very small community health centre—I don't know if it's still a hospital any more—where you may have one donor in five years, it's virtually impossible to maintain the level of expertise. That's why I believe we need to identify people in community secondary and tertiary hospitals who have that accountability. In our teaching hospital we have a physician who has the accountability for public and professional education, as does the whole transplant program, but we're situated in one centre. We reach out to the rest of the province, but it's not good enough.

Ms. Elinor Caplan: Is that the role of the teaching hospital? Is it the role of your ministry of health? Do you see a role for a national agency, or is there also a role for the licensing colleges in your province for those people involved in transplantation, to ensure they are up to date as far as educational standards are concerned?

Ms. Mary Ellen Gurnham: I think it's a shared role. I think the universities can offer it through the continuing medical education and nursing education programs. I think the transplant program has an accountability to ensure that's happening. We need some support or resources in the community, though, so that's where the provincial government would come in. I would see the evidence of ongoing continuing education in the area of transplantation being vested in part of the accreditation process.

Ms. Elinor Caplan: So you think the place for accountability is through accreditation as well?

Ms. Mary Ellen Gurnham: It could also be there as well, yes.

Ms. Elinor Caplan: To ensure the education of the staff—

The Chair: We'll go on to the next questioner.

Ms. Elinor Caplan: Thank you; that's very helpful.

The Chair: Madam Wasylycia-Leis.

Ms. Judy Wasylycia-Leis: Thank you, Mr. Chairperson.

I'd like to pursue this whole area of responsibility and the appropriate role for government in terms of regulating the issues around organ donations and tissue donations and transplants.

First of all, I'd like to ask all the participants if they've received a copy of the government's risk management framework proposal dated May 1998. I was going to ask if you've received it and what you think of it, so I would suggest that we find a way to make sure that participants get a copy of this framework, because it does impact on the work of the committee and on this whole area about finding the right way to move forward.

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I have a couple of questions out of this paper for you to consider and comment on, if possible. It would seem to me that—

The Chair: Madam Wasylycia-Leis, do you want them to comment on it now, or are you asking them to write back to the committee a response to this paper once they receive it?

Ms. Judy Wasylycia-Leis: That's two things, Mr. Chairperson. I would suggest that in fact members appearing before us today actually get a copy of this paper and send their comments back to us. But let me ask a specific question out of this paper around which they may be able to respond today.

We know from other presenters that this whole area of organ donations is becoming big business. We have the possibility of a lot of buying and selling and trading and importing around this issue. What's the appropriate role for government with respect to regulating these products that come into this country?

One of the suggestions in this paper is that we actually move toward the way we're now handling food, where you set up criteria on paper, and importers must meet those criteria. It's basically a paper approval process, without a lot of resources for inspection and surveillance. In fact it suggests that in cases of emergencies—and this is an area where we'll see a lot of emergencies—we allow for the emergency release process to kick in and government to then be removed from any liability. I have a concern about that.

I wonder if you've thought through these issues and what your initial comment might be. As well, I look forward to receiving your comments to this paper.

The Chair: I don't know whether you want to take a shot at that, but let's go, Madam Gurnham.

Ms. Mary Ellen Gurnham: I don't think I can really answer your question without more thought, but I believe it's probably more of an issue in the area of tissues than of organs.

We've had experience in Nova Scotia and in the Atlantic region where American tissue banks have come in. What they can offer hospitals is something we can't offer. They come in and they pay the hospitals for all of the resources for recovering tissues, and those tissues then get sent to the States for processing. Very few of them have the potential to come back to Canada, because our demand is not as great as the demand in the States. When our program was approached by an American tissue bank and I went to our provincial government, there was no policy around this kind of initiative, whether or not the government would.... They just never thought about that kind of whole process.

My concern with all of this is the potential total impact on the donor pool, because the general public does not differentiate between organ and tissue donation, and if they have this view that tissues and organs are being sold and sent out of the country, I think that is going to significantly impact on people's willingness to be organ donors.

I think it is a very complicated issue. There is a lot of buying of tissue across borders that happens now because of the whole supply and demand piece. There really isn't any process regulating that, and I do think there needs to be. I think it is a real gap.

The Chair: Does anybody else want to try that? Okay, thank you.

Mr. Elley.

Mr. Reed Elley: Thank you very much, Mr. Chairman.

I wonder if the panel could help me out here for a few minutes. When a patient comes into a hospital for anything whatsoever, if they are an organ donor, if they have somewhere signed something that says they're an organ donor, will that appear automatically on their charts?

Ms. Mary Ellen Gurnham: In our organization, it does.

Mr. Reed Elley: Good. What about Quebec?

[Translation]

Mr. Donald Langlais: That will be apparent from the health card. The sticker is placed on the health card. If brain death seems likely, a hospital official who wants to check whether or not the person wishes to donate his organs needs only to look at the back of the health card. It is as simple as that.

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[English]

Mr. Reed Elley: So in Nova Scotia it does happen—

Ms. Mary Ellen Gurnham: At the Queen Elizabeth II Health Sciences Centre it does happen.

Mr. Reed Elley: So in one hospital in Nova Scotia this happens. It doesn't happen automatically in the province of Quebec, and probably it doesn't happen across Canada, although we don't know that.

Wouldn't it be a simple thing to do to have every person who has signed a card for organ donation in this country be put into a national registry? All the provinces would cooperate, all the names would go to a national registry. Whenever a person came into hospital and their chart was being made up, it would be the duty of someone in that hospital to punch in their name or their PIN number or whatever, and see whether they're an organ donor and then put it on their chart so that it goes with them right through the hospital system. Comments?

[Translation]

Mr. Donald Langlais: I would repeat that we must recognize that organ donors are individuals who have experienced brain death. They can be identified through a major registry, by signing the health-insurance card or any other way. Nothing will happen if this individual who is a potential donor is not identified at the time brain death occurs. The key is to know who the potential organ donors are, to clarify that and then to intervene in a positive fashion. Let us be clear. In Quebec, even if a potential donor has not signed his health-insurance card, we ask the family whether they will authorize organ donation. We get many organ donations in this way. These people were not registered in any way, but we get results nonetheless.

I don't think the registration method changes anything. We must identify the donors and then proceed. That is an opinion which...

[English]

Mr. Reed Elley: I'm just trying to see how the comments you made would violate anything I said in terms of having a national registry.

[Translation]

Mr. Donald Langlais: The question is actually quite useful. Why should we have a national registry?

[English]

Mr. Reed Elley: I think there are people who slip through the cracks, and you just never find them. So I think we're endeavouring to find ways to tighten up the system across Canada so we don't lose these people. If people in hospitals don't know these people are potential donors, nothing will happen. So I think we have to find a way to make that possible.

Comments from Ms. Gurnham?

Ms. Mary Ellen Gurnham: I guess if we don't have people in hospitals actually asking the questions, whether it's on their chart or not is not going to make a difference. In Nova Scotia we now have donor identification on the health card, and I think by the year 2000 all the people who have health cards will be provided with the opportunity to put that on their health card.

We're establishing with MSI a link into the hospitals so that we can actually do the key-in. I don't know how that will work, because we don't have the linkages set up yet. Before we would go to the expense in infrastructure of setting up a national registry, it might be useful to assess the efficacy of provincial base links in that way, to see if it does make a difference. But I think you have to have both parts: you have to have the donor identification, then you have to have to have the trained staff at the point of care who actually do the asking at the time.

Mr. Reed Elley: Okay, let's make sure we don't drag our feet on this, because with the technology today we should have instant access to organ donors.

The Chair: Thank you, Mr. Elley.

Just before I close, I wonder if any of you can clarify something for me. Maybe this is an unfair question for anybody except Mr. Langlais and Madam Gurnham, but my understanding of the way the Spanish system works is that there really isn't a registry system per se. In reality, what happens is that a potential donor is identified once he or she has been declared brain-dead or once the hospital procedures identify that someone has expired, and then at that moment the deceased becomes a potential donor.

Clarify for me what happens here. We have a potential donor through self-identification, through signing a card, signing a health card, whatever—or does the potential donor get listed on the chart only upon expiration?

• 1100

Ms. Mary Ellen Gurnham: We ask that question on admission. Again, I think there are to some degree inconsistent practices. Then we do audits of the records to try to assess whether or not we're capturing them.

I think it happens in a variety of ways. We ask on admission. We also ask at the point where it looks as if someone is heading the way in terms of their status toward being a potential donor.

Ms. Elinor Caplan: I have one last short question.

The Chair: It will have to very short.

Ms. Elinor Caplan: Following up on the idea of auditing and roles and responsibilities, do you see a role for the provincial government, through their regulations under their public hospitals act, to require procedures for education, or asking within their hospitals and reporting on that, as well as through accreditation procedures?

Ms. Mary Ellen Gurnham: Yes, I do. I think what's lacking now is any reporting upon or accountability mechanism.

Ms. Elinor Caplan: So the provinces also could initiate that.

[Translation]

Mr. Richard Tremblay: Mr. Chairman, I'm expecting to receive the May 1998 document referred to by Ms. Caplan earlier.

Since I have not seen it, the only comment I can make is that we must be extremely vigilant and cautious when we talk about the commercialization of organs or tissue. If we don't have some very strict control procedures, we could do irreversible harm to the cause of organ donation. We must be extremely vigilant when we start talking about dollars and organ donations at the same time. That is unacceptable to families. You will appreciate that I am eager to see this document.

[English]

The Chair: I'll give you a ten-second closing comment.

Ms. Mary Ellen Gurnham: I do believe, in response to your last question, that accreditation would afford more consistency nationally across the board.

The Chair: On behalf of all committee members, I thank each and every one of you for taking the time out of your day and for the travel you've undertaken to come here as well. I know the one who has come the farthest is Madam Gurnham, but the rest of you have travelled some distance as well. Thank you very much for sharing your experience and expertise with the committee.

The committee is adjourned until the call of the chair.