HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, February 9, 1999

• 0904

[English]

The Chair (Mr. Joseph Volpe (Eglinton—Lawrence, Lib.)): Order. We can get started, colleagues, ladies and gentlemen.

Welcome to the third sitting of the health committee's study on the state of organ and tissue donation in Canada.

• 0905

Today we have two panels of individuals. For our first panel, I welcome Madam Madeleine Murphy; Madam Lina Cyr; Monsieur James McLaren; and Monsieur Bert Hoferichter.

I welcome all of you to the committee's hearings. I'm sure your presence and your contribution will help give us a better insight into the issues associated with organ donations and transplants. We thank you for sharing with us your personal experiences.

For those of you who aren't familiar with what happens in a committee environment, typically what we'd like to do is engage you in a presentation for about five minutes, during which you will be uninterrupted. After that, we'll have questions from both opposition and government members. We try to establish a dialogue-type environment, but that too is fairly well structured. If you could stay within those five-minute parameters, then, we'd be very appreciative.

Madam Madeleine Murphy, how would you like to begin?

Ms. Madeleine Murphy (Individual Presentation): Oh, I'm the beginner? Okay.

I am here as the mother of a son who is on dialysis. Philip, an assistant to one of your colleagues in our Parliament, works long hours, as you do, and in addition spends, twice a week, five more hours at the end of his day on dialysis. He also spends every Saturday afternoon tethered to this wonderful machine that sustains his life.

Philip—he's behind me—is here to help me answer questions that may require a better memory than mine.

Philip and I have spent a lot of time reading and researching the topic of organ donation, so when he informed me that Mr. Allan Rock had referred this topic to this health committee, I made a point of attending your meetings as an observer. That is why I am familiar with the documents you are considering.

Although there are 13 strategies in your blue book, I have chosen to expand on two notions in this brief. I cannot emphasize strongly enough, however, that your recommendation to implement at least some of the strategies will be far better than recommending none at all. I believe it would be a mistake to refer the ideas to further study. This subject has been studied to death over the last 20 years or so, and now is the time for action.

I brought packages of information here today that include my covering letter to the members of Parliament, explaining a table I devised that regroups—and simplifies, I hope—your approach to recommendations.

The two issues I wish to address are, one, the declaration of donor wishes, and two, respecting the wishes of the declared donor.

First I will address the declaration of donor wishes. As you know, we have a fragmented method for declaring our wishes—that is, our driver's licence, which some provinces have discontinued; the health card, which some provinces provide and others don't; and donor cards provided by other organizations, of which the distribution is very sporadic at best. That's not to mention that these documents are not always available when needed.

To me, the method of signing a consent that seems the most efficient is the one that would provide a space on the federal income tax return. It could simply ask the taxpayer to check off one of three choices: (1) I wish to donate my organs/tissues upon death; (2) I do not wish to donate; or (3) I am undecided.

This method of recording would have the added benefit of facilitating the input of this information into a national registry of declared donors. It would also allow a person to reconsider each year. In the case of minors who don't complete income forms, the decision would remain with the parents, as it should anyway.

• 0910

As an aside, the precedent for using the income tax form for matters other than income has already been set by Elections Canada, starting with our 1997 return.

I've given you each a package—and I don't know whether you've received this yet—that includes a covering letter explaining my views and a sample of the income tax form that shows the box Elections Canada uses. It also shows a little yellow insert explaining enumeration.

There is a box on the first page that allows us to designate whether we wish to be enumerated via this form. There is also a small yellow insert with the tax form explaining enumeration and a follow-up insert in the 1998 form reporting the results and further information on enumeration.

What a perfect vehicle this would be for also educating the public regarding organ donation, which is another important strategy in your blue book. It would also allow us to expand each year on a different aspect of organ donation with a view to educating.

The second issue I'd like to address is respecting the wishes of declared donors. If we have a clear declaration of the deceased's wishes, I believe we are honour bound to respect those wishes, and should not put the burden of decision on loved ones.

I have multiple reasons for believing this. First, it seems to me redundant to ask permission when the principal's wishes are already recorded. Second, it would make the health professional's task less stressful if they could inform the family of the patient's death, with the usual sensitivity and compassion, and inform them that they are proceeding to fulfil his wishes to donate his organs to help others. This would be in contrast to asking the family, and burdening them with the decision.

I don't have real evidence to back up this next statement, but I suspect there are times that organ retrieval does not take place because some members of hospital staff are understandably reluctant to approach family or because some hospitals are not staffed with personnel trained to do the asking.

In addition to taking the stress off hospital personnel, I strongly believe it would take the stress off the family. I have some anecdotes to illustrate this notion but will cite only one due to time restrictions.

At the time of my dear brother-in-law's death, my sister was too stressed and fatigued to deal with the questions related to organ donation. Although she was approached, after several questions she said no. Less than 24 hours after his death she looked at me with anguish and told me she wished they had taken all that would have benefited others, because that was what he had wanted.

You see, he had signed his consent on his driver's licence, and discussed it with her, because of my experience with my son, his nephew. She continues to not only mourn him but also to deal with this regret.

Thank you.

The Chair: Thank you, Ms. Murphy.

Madam Cyr.

[Translation]

Ms. Lina Cyr (Individual Presentation): Good morning. It is a great pleasure to be here today. I'm very happy that someone is starting to think about organ donation. You have established a standing committee, and I hope that committee will remain in place.

In 1987, 11 years ago, I had a liver transplant. After that, I decided to found the Association des greffés du Québec to bring together people who had been waiting for a transplant for some time. As you know, waiting for a transplant is not like being treated for cancer. In your families, one out of two will eventually have cancer, while perhaps only one in one hundred will have to wait for a transplant. This is why we need governments to get involved.

• 0915

We are very happy to see governments becoming involved. Only about 1% of people receive an organ transplant, while one out of two people have heart disease. This is why organ donations are very difficult to find. They are associated with many taboos, and we have to work very hard to make donation a national cause, as many other diseases already are.

In Montreal, I founded the Maison des greffés du Québec—a shelter for people waiting for organ donations. It is the only one of its kind in Canada. People who come need some kind of support once they are ready to receive a transplant. Sometimes, they have to wait for months and months. I know one, Mr. Tremblay, who has been waiting for a lung at my shelter for 18 months now. That is extremely long.

I suggest that the government establish committees with a specific mandate within hospitals. That is where everything starts. Once a patient is near death, when that critical moment arrives, it is very difficult to approach the families and ask them to donate the organs of their loved ones. There should be specific committees to do this. There should also be awareness-raising activities in schools and cegeps. There should be posters and public service messages broadcast on TV all year round, as other messages are.

We need to make many more people aware of this problem. Awareness is very much lacking. As Ms. Murphy was saying, we need to establish education committees who would explain that an organ cannot be bought or lent. It can only be given. Myself and other organ recipients know exactly what that means. We were terminally ill, we were near death, and we were waiting for someone else to die so that organs could be retrieved.

We should talk about this within our families. Organ donation means survival. That young man sitting behind us, who works here and has to undergo four hours of dialysis three times a week does not have a high quality of life. There are so many people in Canada. Why can we not procure organs so that donations are there when we need them?

The United States has issued a stamp highlighting organ donation. They have done that. Now I believe that the governments of Canada and Québec should become very involved in organ donations. Thank you.

The Chair: Thank you, Ms. Cyr.

[English]

To you, Mr. McLaren.

Mr. James McLaren (Individual Presentation): Good morning. I'm very proud to be here this morning as a recipient. Who better to talk about transplantation than the living proof, those who have received a life-giving transplant?

I am very grateful for my second chance at life, and I really wish to take this opportunity to present some of my views in the hope that they will be of some help in establishing some kind of national, unified campaign to improve the situation in organ donation in this country.

As a very proud Canadian, I am hurt and dismayed when I hear other countries say, “Oh, Canada; you are lagging so far behind in organ donation”. It doesn't have to be this way. We can make changes.

After my recovery I spent a lot of time trying to help within the transplant community by doing as much as I could to promote organ donor awareness. We need much more work in the field of education, I believe, in making more people aware in this country.

I wear a badge that says, “Ask me about my transplant”. When people do, it opens the door for talks about organ donation. It's amazing, some of the reactions I get from people: “Oh, no way, you haven't had a heart transplant; you couldn't have, you look so good”. Well, I ask you, what is transplant recipient supposed to look like?

• 0920

This is something we must work on. I feel it is my duty to help to get that awareness out there by standing up, being seen, being visible, and by speaking out and being heard as a transplant recipient to help in this area.

I've submitted a brief to you covering what I believe are the main problems in organ donation in this country and what I believe are very plausible solutions. I'm quite positive that with the information this committee will be gathering, from lay people like myself and from professional organizations, a good basis of information and ideas will come forth and some good recommendations will be put forward. This is a wonderful opportunity for us to do something in this country about our problem, and I'm very confident that something good will come of this. Anything at all that helps the organ donor rate in Canada, I'm all for.

Some things that have been said already I will reiterate. The problem in this country is identification of potential donors. This has been a big problem, basically because of the fact that we don't have a unified system in the country. Every province is using their own system, many of which are lacking legally, which forces us to ask for consent from the family or next of kin. This opens the door to refusal, and again, the donor's wishes are not being honoured.

There have been studies in this country and elsewhere in the world that I believe will show over 90% of people believe a donor's wishes should be honoured. What is happening is that we are bypassing law with protocol by asking the question of the family, giving them the chance to say no. Obviously, if the family makes that decision, no donation will take place. Whether it's law or not, it's protocol.

I think the answer to that is to have a system where the family is not placed with the burden of making that decision. I will cite the example of the organ donor registry that's now over one year old in British Columbia.

A legal document is signed stating even the organs the donor does or does not wish to donate. This is based on the health number of the proposed donor. It is scanned into a computer. When a potential donor is identified in hospital, simply with the name they can find out if that person has a health card number. When they discover the health card number, they can find out if the person is registered. If so, a fax of that legal document can be provided within seconds. The family can be shown this, and told, “Here are Uncle George's wishes”. It's in black and white.

It does require staff people who have been properly trained to do this. It's a very difficult job. But if it is done right, the question does not have to be asked of the family, and refusal will almost be eliminated.

The other problem is identifying the donors. A system called “required referral”, which has been in place in other areas, especially in Pennsylvania in the Delaware Valley transplant program, has over a five-year period shown dramatic results. The hospital is required by law to identify any potential donor and notify the organ procurement organization of wherever.

If a properly trained staff person is on hand to work with this system and to talk to the family, a lot more donors will be identified and more donor organs will become available.

This could help immensely. Some of the figures show that as much as 40% of possible donors are missed by not asking, or not identifying them.

If these simple practices—and I say simple, but it's probably not as simple as I think it is—can be put into practice right across the country, there will be a dramatic effect on the organ donor rate of this country. The bottom line is that there are people dying now who don't have to die. We can save Canadian lives with a few simple changes in our system.

I also believe a public education program is extremely necessary, particularly in our school systems, so that children learn about organ donation and transplantation at an early age.

The brief I have presented to you is much more detailed. I believe you all have a copy of it. If anyone has any questions specifically about the organ donor registry in British Columbia—I feel that would be a good example to follow for a national registry—I would be more than happy to attempt to answer any and all of your questions.

Thank you.

• 0925

The Chair: Thank you, Mr. McLaren.

You may not know it—members do know—but we will also have representatives from British Columbia on that registry a little later on.

To members, I think this would be a good opportunity to ask Mr. McLaren some questions to be even more prepared for subsequent presenters.

Let's go on to Mr. Bert Hoferichter.

Mr. Bert Hoferichter (Individual Presentation): Good morning, Mr. Chairman, fellow recipient, and honoured donor families.

It is a rare privilege for me to speak to you today. The heart that is beating in my chest is not my own. It is on loan to me. It is my responsibility to take the best possible care of that most precious gift. The family of the silent hero gave it to me in loving memory. It demonstrates a very deep and profound understanding of God's most precious gift, the gift of life.

I received my gift at the age of 57, after a very active career in professional photography. It gave back to my wife and my three children the loving husband and grandfather they so richly deserve.

Organ donation works. Right here in Ottawa, a man saved the lives of three others. Brian Smith, former NHL hockey player and TV broadcaster, was maliciously gunned down at his place of work by a demented person. His wife and his family had the strength and courage and wisdom to give the gift of life, to donate his organs for someone else to carry on.

Seven-year-old Nicholas Green was gunned down on a family holiday in Italy. His parents made a decision, right in Messina, Sicily, on Nicholas' bedside, to donate all his organs. It saved seven people's lives, and he became a national hero in not only Italy and Europe but also the United States.

In 1997 we had 1,578 transplant operations performed in Canada. We had 2,829 people on the transplant waiting list, and of those, 150 died prior to receiving an organ.

Organ transplantation has become the preferred treatment of end-stage heart, kidney, lung, liver, and pancreas diseases. It works. The longest living kidney transplant now goes back to 1954.

In our own group, which is the Heartlink group of the Toronto Hospital, we have 183 living heart transplant patients, some of them going back to the inception of the program in 1986.

There was a time when a heart transplant recipient was given at the most five years, and we were content with that. Things have changed drastically.

I am absolutely amazed at the lackadaisical-type law we have in Ontario. There is really no hard and fast rule for donating an organ. I go about the country, and in the province, to speak to service clubs about organ donations. I think for most of us, once we have gone through the experience we have, it becomes like a religion. We become pastors, and we go out there and preach. In my preaching I speak to service clubs and to people about organ donations.

If I were to make any recommendation to this committee, it would be that the fourth part of M-222, to fulfil the will or the intent of a donor, is the most important. Most people say they have an organ card, but when it gets to the second stage, that something—God forbid—should happen, the family will say no.

In Canada, with a population of some 30 million people, we had exactly 402 organ donations in 1997. It's the lowest among the civilized countries. In countries like Belgium, there's a surplus of organs available.

• 0930

We should never confuse, however, the size of our country with others'. To transport an organ from Vancouver to Toronto means a six-hour plane ride, and the window of opportunity to transplant an organ, which used to be four hours, is now up to eight. It's very difficult to compare ourselves to European countries.

Our rank among organ-donating countries is second lowest, and I think it's high time we changed that. It has improved over the years, but certainly not to the point that we take advantage of every possible donation out there. We must make sure that the will of the donor will be done.

I am concerned about removing the financial incentive to hospitals. From a layman's point of view only, I think there is a cost involved in taking the organ out to the hospital—for instance, it might be in North Bay, a small hospital—and of course transplanting the organ. If we take away incentives, I wonder if there is also a reason not to procure an organ.

I believe we must continue with M-22, and see it become law to make it more accessible for the hundreds of people on waiting lists and for the people who are senselessly dying without organ donations.

Thank you.

The Chair: Thank you, Mr. Hoferichter.

We'll now turn to questions from the committee, beginning with Dr. Martin.

Mr. Keith Martin (Esquimalt—Juan de Fuca, Ref.): Merci beaucoup, monsieur le président.

The Chair: Excuse me, Dr. Martin, but I neglected to advise all committee members that we are joined again by Senator Simard, who is here as an observer and also as a recipient. He has declined to make a comment, but he may change his mind a little later on.

I'm sorry for interrupting.

Mr. Keith Martin: Thank you.

I'd like to thank all of you for coming here today. I thank Senator Simard for the help he has given in bringing this forward within Parliament. He has been extraordinarily helpful, as has Mrs. Murphy, and the rest of you. I thank you for the great work you've done in trying to bring this issue forward.

I'd like to draw your attention to a couple of points.

In your brief, Mr. McLaren, you very articulately showed that if a person tells their family members when they choose to become an organ donor, if they express to them what they're doing, then the acknowledgement rate, or the fact that the family does not go and actually get in the way of preventing that person from donating their organ, jumps from 56% to 96%.

Mr. James McLaren: Correct.

Mr. Keith Martin: So if on an income tax form, for example, there was an area there for the person to say they would like to be an organ donor, and also a section that asks whether they have discussed this with their family, do you think this would enable that person's wishes to be acknowledged and fulfilled in the unfortunate circumstance that the person passes away?

I'll just go through the questions, if I may, before you answer.

Mr. Hoferichter, could you please tell us about your experiences in using the Internet, and whether you feel the balkanized system we have today in the country is not working, and we need a national registry?

Mrs. Murphy, perhaps you could tell us what you think about being able to use this form within the income tax system and how effective that would be with a national database.

Thank you.

The Chair: Mr. Hoferichter, do you want to go first on this one?

Mr. Bert Hoferichter: There was an excellent incident just this morning, when I met James McLaren. James, though the Internet, has given me advice on various problems that people like us have. Mine was particularly my cholesterol level, and what drug I should use. James suggested—he had the same problem—a change to another drug. I changed to it, with the consent of my doctor, and my cholesterol level went from 12 to 5.5 within two months.

So there is a lot of interaction between transplant recipients and between donors who ask questions. I don't know what I would do without the electronic media at my fingertips each and every day. No matter what problem we have, I think we learn more from each other than we might learn in a clinic from a doctor.

• 0935

Anything to add?

Mr. James McLaren: Yes, thanks.

It's very important to share your experiences with others. Let's face it, not one of us has done this before. Maybe you could say misery loves company, but I don't think Bert and I have any misery. Everything in our life now is just wonderful thanks to our donors, who have given us this opportunity.

In answer to the first part of your question, talking to the family, it has been proven by those figures I quoted that when a family knows the wishes, they are more liable to give consent. But I think the most important thing is to have some type of system where we don't have to be faced with the consent problem—in other words, not letting the family have to make that decision.

I think that's what everyone really is saying, although maybe in different ways. We do need some method of actually protecting the donor's wishes and seeing that they are carried out.

If we examine the human tissue gift acts in each of the provinces, it will be found that within those acts it actually does state, as law, that those wishes should be attended to, but because of the different systems we have, they aren't. If we are forced to ask the family for permission, we are going to get refusals, and I think that is one problem we can overcome by having a system.

Again, the system in British Columbia is only a year old, but I'm sure statistics will show, in time, that this system eliminates the need to ask. The refusal rate will go down and the donation rate will go up. I'm convinced that this will happen.

The Chair: Mrs. Murphy.

Ms. Madeleine Murphy: Dr. Martin asked a question regarding the income tax form. I believe I mentioned in my brief that the precedent for using the income tax form for something other than income has already been set by Elections Canada. It's right on the front page of our income tax form. It also would be a natural lead-in to inputting this information on a national database, since all the information is inputted anyway by Revenue Canada.

I also mentioned the fact that this little yellow flyer came with the 1998 form and also with the 1997 form, when it was introduced. It gives us a perfect vehicle for talking about organ donation, for informing people. We could even target a different aspect of organ donation every year, because we do our income tax every year.

So that would target not only the declaration but also the national registry and the education part of our strategies in our blue book and in Dr. Martin's motion.

I also believe, as Mr. McLaren was saying, that people are really appalled. Because people ask me about my son's health, it's a natural lead-in to the topic of organ donation, and I've conducted a little mini-survey over the years. I ask people if they realize that even though they have written somewhere that they want to give their organs, their uncle or their father or their spouse can say no. Without exception, every person I've questioned has been appalled by this. They treat it with disbelief.

If you sign some document saying you want to give your organs, that should be honoured. The next of kin, as I said in my brief, should be approached with compassion and informed of the passing, but should be told the process for organ retrieval is taking place.

The Chair: Thank you, Mrs. Murphy.

Madam Picard.

[Translation]

Ms. Pauline Picard (Drummond, BQ): First of all, I would like to thank Dr. Martin for having made it possible for the committee to study the issue of organ donation. Thank you.

I'm very moved by our panel here today. Some of you have received donated organs. The fact that you are here, in good health, and even alive, is truly miraculous. This might help people understand just how important organ donation is.

• 0940

My first question is to Ms. Cyr. I come from Québec, as you do. You mentioned the Maison des greffés du Québec. I have never heard about it before. That proves just how little information we really have. If we ourselves don't need a transplant, we don't think about this very much. We are touched to some extent when organ donations are discussed and when we see a TV ad about someone who was saved by an organ donation. But it doesn't go further than that. So I'm very happy to have you here today to tell us about the Maison des greffés. What is the purpose of your shelter? What role does it play?

Ms. Lina Cyr: When I received my liver transplant in 1987, I was living in Montreal. Transplants are not performed in the regions, and I saw how much need there was for some kind of shelter for recipients in Montreal. The Maison des greffés has 27 rooms, accommodating people waiting for all kinds of organs. It gives them an opportunity to talk to each other, encourage each other, and share their experiences. These are not experiences you can share with just anyone.

So we take them in. We spend a lot of time talking about organ transplants. I received my transplant 11 years ago, and I have been working to promote organ donations for 11 years now. In Québec, we have formed a coalition—Québec Transplant. We work very hard, but don't always find listeners. However, when you knock at a door for enough years, someone will finally open it.

Many people had asked me for shelter because I had founded the Association des greffés du Québec, which brought together transplant recipients. That is why I founded the Maison des greffés. It is located on Sherbrooke Street, and serves all hospitals in Montreal and Quebec City. People come to stay from all parts of Quebec. Two thirds of their costs are covered by my foundation, the Fondation Lina-Cyr. The residents themselves pay $15 a day. For that sum, they receive room and board and transportation to the hospital. We organize activities. And also have nurses. But there is little participation by governments.

Ms. Pauline Picard: Are your residents people who have received a transplant and come to you to convalesce, or are they waiting for an organ donation?

Ms. Lina Cyr: Both. They come to wait. We have one resident who has been waiting for a lung for 18 months now. So they wait at the Maison des greffés, and then come back for the convalescence.

Ms. Pauline Picard: Do health care workers participate in the process? Do you have some kind of arrangement with the hospitals? Do people ask you to put them in touch with donors or recipients?

Ms. Lina Cyr: The residents are sent to us by hospitals. The hospitals send them. I have a government permit for this.

Ms. Pauline Picard: Are they sent by doctors? Do you have psychologists? Which health care workers contact you directly?

Ms. Lina Cyr: A patient of the Royal Victoria Hospital will have his case dealt with by social workers, psychologists and doctors at the Royal Victoria.

Ms. Pauline Picard: What is the greatest problem facing the Maison des greffés at present?

Ms. Lina Cyr: The greatest problem is how long recipients have to wait. They are far from their families. For example, if they come from Val d'Or, their families can visit on weekends. We are geared to families. However, they do count on me a great deal. They come to my house and rely on my experience. They see that I received a transplant 11 years ago, and I'm still alive. So if they're waiting for a transplant, they can look at someone who has been living with one for 11 years. The longest-surviving liver recipient received his transplant 15 years ago. The longest- surviving lung recipient received his transplant seven years ago. At the Maison des greffés, we provide our residents with a good quality of life. We try to give them everything we can, but we will need government assistance to give them more.

• 0945

Ms. Pauline Picard: Do you have data from other provinces about organ donations or organ searches that could benefit Quebec? Quebec could also exchange information with other provinces and other hospitals.

Ms. Lina Cyr: We have Québec Transplant. We established the IDO a year ago. The IDO is a committee suggested in the Gélineau report. We have a great deal of documentation and surf the Internet for Québec Transplant. It's a very interesting exercise.

Ms. Pauline Picard: On the basis of your experience, what would be the best way to raise awareness about organ donation?

Ms. Lina Cyr: People are aware of the issue. The problem is in the hospitals themselves. Doctors and nurses are extremely overloaded and do not have time to stop and ask families for organ donation. So, in co-operation with the IDO, we're trying to establish committees in hospitals that would train people solely to perform that task. They would have all the information they needed to help families understand the importance of organ donation.

Of course, it is better to see a government ad on TV, rather than an ad by a small organization. I strongly recommend that committees be established in the hospitals and that promotional and public service messages be broadcast on TV and disseminated in schools and elsewhere.

[English]

The Chair: Merci, madam.

You've just raised a question in my mind. Some of the literature says—and this is contrary to an opinion that's already been expressed by this panel and others—that perhaps the opting in or opting out issue is not the one that will result in greater or fewer numbers of organ donations and donors. What is most effective, apparently, is a properly trained, dedicated organ management and procurement team.

On the basis of what you said just a few moments ago, Madam Cyr, I'm wondering what your experience has been with local procurement and management teams, whether they exist and whether they are as well trained as some of the people and the literature indicate they should be.

[Translation]

Ms. Lina Cyr: I belong to the IDO and to Québec Transplant. The Québec Transplant report stated that people should receive better training within the hospital environment.

[English]

Ms. Madeleine Murphy: May I add something to that?

The Chair: Certainly.

Ms. Madeleine Murphy: That is one of the strategies. The identification of the donor is very important, because if the donor is not identified when he's in a comatose state in the hospital, there's no donation. He just gets buried, and that's it. So that is a very important aspect of organ donation.

Now, that might be considered a provincial matter, because it's a hospital thing. However, I don't know if there is a place for this committee to recommend to the provinces that this be a basis for accreditation in the hospital, that there be a proper identification of all patients and also an accounting of all patients who are in a position to donate in an ICU.

So I would think that's a good one, because as I said, without the identification there's no donation.

I think Canada is ready to raise the donation rate. There are a lot of things we can do. I'd like to see Canada match the countries that we're using as models, but I wouldn't be surprised if Canada could surpass them and become a model. We wouldn't have to go across borders to look for models.

The Chair: Well, thank you for your confidence, Madam Murphy. The committee members here are determined to look for a way in which the federal authority can play a leadership role.

Madam Ur.

• 0950

Mrs. Rose-Marie Ur (Lambton—Kent—Middlesex, Lib.): Thank you, Mr. Chair.

I thank you all for your presentations. It must be difficult to share your experiences, but you're strong soldiers, and you've done your job well. I certainly was moved by your presentations.

Mr. McLaren, do you have any information as to how the Pennsylvania transplant team got around their privacy act when they implemented their referral team?

Mr. James McLaren: They had to pass legislation to do that. I don't know the number offhand, but there was legislation passed to do that.

I don't know all of the details. I'm in the process of corresponding with somebody in Philadelphia who is trying to fill me in on a lot of those details.

Later in the hearings I'm sure there will be somebody from the British Columbia Transplant Society who can tell you more about that, as they are trying to implement it in British Columbia. It was based in large part on the Delaware Valley transplant program system. I'm sure they will have much more up-to-date and professional information on that aspect of it.

Mrs. Rose-Marie Ur: Sure.

In your document—and it was well put together, by the way; I haven't read it all, but I've been reading excerpts—you mentioned the lack of consent, or how it can be overturned by family. You were saying that if we could have this national registry, it would be important to the families, because the onus wouldn't be put upon the families at such a moving period in their lives.

Do you feel it's happening like that in B.C. with the registry they have there?

Mr. James McLaren: It's pretty hard to draw any conclusions from one year of activity, and a lot of the stats are not out yet, or are not available to me. I do believe, though, and I think it stands to reason, that if the proper approach is made to the family in taking that awful decision off their minds....

I mean, let's face it; there couldn't be a worse time for a family to have to make that decision. Many families who did refuse donation have stated later that they wish they had made a positive decision, but they can't go back and change it.

So if the family is not faced with that decision, I really do believe it will be very advantageous to increasing our donor rates.

Mrs. Rose-Marie Ur: I believe Ms. Murphy had stated that with regard to her sister. I think it probably could be part of the bereavement healing process for people who have lost their loved ones to be able to educate those who are experiencing these very emotional times, for them to be able to go out and speak to people who have gone through this experience.

Is that what your sister is doing in terms of trying to cope with her actions?

Ms. Madeleine Murphy: She does it on an individual basis. She hasn't taken it up as a cause. She has other causes.

But you make a good point. If one of your loved ones donates his organs, it would help in the bereavement process. In her case, it has stalled it. She actually did say that she wishes they had taken everything that would have benefited others. She did state that. She would feel better about it today if she had not been approached, because she knew he wanted to give his organs. It was just a stressful time.

Mrs. Rose-Marie Ur: Exactly.

Although this probably would fall under provincial jurisdiction, with the dollars involved in transplants do you think there should be a separate transplant fund, a travelling transplant fund, in provinces? Would that alleviate the concerns? Perhaps one hospital can't—

Ms. Madeleine Murphy: A transplant...?

Mrs. Rose-Marie Ur: A transplant fund. It sounds a little callous, but it's been brought to our attention that some hospitals may find it difficult financially to retrieve organs or to do organ transplants. Would that be an added benefit to some of the concerns being experienced in some of the hospitals?

Ms. Madeleine Murphy: I hadn't thought of it from that point of view. I had thought of it from the point of view of our provinces including that in our health plan, and hospitals being reimbursed.

I believe that's one of the notions you mentioned, Bert, that we should have incentives, not disincentives, for retrieval in our hospitals. Because of the cost of retrieval, it may be a disincentive to identify and go ahead with the retrieval.

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As to whether that could be included in our health plan, well, physicians who do appendectomies are reimbursed, and the hospital is also reimbursed by our health plan; why not organ retrieval?

With regard to a special fund, I don't know. I hadn't explored this.

Anybody? Nobody? Where's my helper?

Voices: Oh, oh.

The Chair: We can come back to it later, Madam Murphy.

Ms. Madeleine Murphy: I hadn't even thought in that direction. I don't know.

The Chair: Mr. Myers.

Mr. Lynn Myers (Waterloo—Wellington, Lib.): Thank you very much, Mr. Chairman.

I want to begin by thanking each and every one of you for being here this morning and presenting. I'm very impressed by what you have to say and how you're saying it, in a meaningful way that will help us in this very important area.

I wanted, Mr. McLaren, to go to your summary on page 5. You talk about, under items 7 and 10—and maybe this is a question I'd ask each of the presenters at some point—advertising and marketing and also a “massive public education program to put donation in a positive light”.

It seems to me that's a very important thing that we as a committee have to look at, this whole area of public awareness and education, and making sure we get those messages out. Maybe you could start by addressing that, and perhaps some of the others could comment as well.

Mr. James McLaren: I can speak of course only for British Columbia, where I live. With the advent of the new organ donor registry, there was quite a media campaign, but I think it needs more than that. If they're putting commercials on television, people are at the refrigerator, let's face it.

As for putting ads in newspapers, they've had posters of different people who have had transplants. It will say, for instance, “Theresa, 44, heart and double-lung transplant”.

I don't know how much effect that really has. The idea was to try to show the public that transplant recipients are normal, everyday people who have returned to normal lives as best they can. But I do think the education is easier for people to understand and pick up on when they hear it from a transplant recipient.

I'm a very strong advocate of having all recipients...or those who are capable, or who feel like it. Some don't, and won't want any part of it. I understand that. But for those, like me, who do, I think we should be out there. We should be the ones who are helping to educate the public. We've been through it. I've used this term before, and I'll use it a million times in the next year, I'm sure: we're living proof. I think that's so important.

It's sometimes shocking when I hear people's reaction of, “Why is there a shortage when so many people die?” I don't think the average Canadian understands that in organ donation, there's the criteria of brain death, which limits the available pool—if I may use such a crass choice of words—to 1% of deaths. From there it goes down, as you go through things where there's injury or disease. Then, of course, you get the big problems—lack of identification and lack of consent.

So advertising and making the public aware I think is paramount to the success of the program. Whatever system we end up with in Canada, be it national or provincial, it won't matter if people aren't supporting it.

With regard to to the type of system, we could have everybody in the country signed up to whatever system we choose, but if we don't have identification and if we don't have consent, it matters not.

So I think education is so important. It has to be done.

The Chair: Mr. Hoferichter.

Mr. Bert Hoferichter: I believe we should very much follow the model of some of the heart foundations—I can't think of names right now—where they continuously do a monthly television campaign. Whether it's done on a provincial or a national level is immaterial. I've been in the donation situation for the last four years, and I don't think I have seen any kind of reminder on TV. I don't recall seeing anything in the media other than, for instance, the fact that last week we lost an organ that was donated.

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The bad things are what you see in the media, not the good things that are really happening, and I think we need to continue on.

On another line, an organ privacy act in Ontario was established in I think 1950 or 1954. Nobody has asked a donor's point of view, but I would love to be able to know who my donor was, to put my arms around that person's family and to say thank you.

The hardest thing I had to do after I came home from the hospital, after being five months in the hospital, was to write a thank you letter to the donor family. I had to sit down and say thank you, which was a tremendously hard thing to do. I don't know why there is this mystique around it. I'm sure the donor family would love to meet me, and I would love to meet them, but, no, we can't. It's a mystique; better not get into that.

So if we can expand, on a national level, making people aware of organ donations, I think we might be more successful.

The Chair: Thank you very much.

Ms. Elinor Caplan (Thornhill, Lib.): Can I ask just a little question?

The Chair: Yes, okay. We have one minute. Go ahead, Madam Caplan.

Ms. Elinor Caplan: It really is a very short question.

I too want to say how much I appreciate your coming and sharing your experiences with us.

You've mentioned that you believe families should not be able to overrule the wishes of people who say they're donors. The difficulty we have, as lawmakers, is how do you do that in law?

I'd ask, then, what penalties you think should be in place for families or doctors who don't abide by the wishes of potential donors. Because if you say there should be a law that says they can't, we need to have some advice on how we would do that.

The Chair: That was a longer question than I had thought it would be, Madam Caplan.

I don't know whether you want to give this one a crack.

Go ahead, Mr. Hoferichter.

Mr. Bert Hoferichter: I think the laws are broken to begin with. I know how old my donor's heart was. Legally, I shouldn't know it. I didn't ask for it; it slipped out in conversation.

I think the medical people, be they surgeons or what have you, are quite willing to give you the good news and say this and that. So I think the laws are broken unconsciously.

The Chair: I think what Madam Caplan was getting at is what kind of penalties we should have against those who break them—How shall I put it?—in a negative sense. In other words, they don't provide the gift of life when there was an indication that there should have been such a donation.

It's a very difficult question, I understand that.

Madam Murphy, you want to try it, right?

Ms. Madeleine Murphy: No.

First of all, I don't think there should be any penalty anywhere in this field. If we have in place the notion that the next of kin is not in the position to refuse, I think there wouldn't be an opportunity to break whatever law you want to call it. There wouldn't be that opportunity.

Again, if the law's in place and the next of kin is not consulted, and if it becomes an issue at the time of death, then I believe it should be dropped. But I don't think it would become an issue in most cases. I believe the next of kin would be relieved not to have to be burdened with that decision at that time.

The Chair: But you would agree that the question of consultation with the next of kin preferably has to take place well before the issue of donation does occur, and that the problem really takes place when such consultation hasn't occurred prior to the moment.

Ms. Madeleine Murphy: When you're saying “consultation with the next of kin”—

The Chair: Sometimes the potential donor doesn't advise their next of kin that he or she has indicated a willingness to provide a donation.

Ms. Madeleine Murphy: That's why, if we have some kind of document such as the income tax form, there might have been an indication of the patient's wishes. If there's no indication anywhere, then it's obvious that we'd have to ask the next of kin, and if the next of kin says no, then in my opinion there shouldn't be a penalty.

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Ms. Elinor Caplan: I asked the question because I think it's important to know that when people come forward and say they shouldn't be able to overrule the wishes, and people are upset at the thought that their wishes can be overruled, as lawmakers, it's very difficult for us. I agree with you; you don't want to put penalties in place. On the other hand, you want to frame policies that are going to work.

I think the idea of people discussing this and communicating it is extremely important, but I don't think anyone around the table believes you should have a law that would force wishes to be adhered to.

The Chair: We'll let Mr. Hoferichter have a last comment.

Mr. Bert Hoferichter: Why does it have to be difficult? I have in my wallet an organ donor card. If our laws are such, why do they have to ask my wife or my children for permission? I have given the permission. I have said, okay, take my organs. They shouldn't be asked.

Ms. Elinor Caplan: Well, that's where the dilemma comes in.

The Chair: Madam Caplan, we can continue to discuss—

Ms. Elinor Caplan: Should there be a penalty if your wife or someone in that situation says they don't want this to happen?

Mr. Bert Hoferichter: No.

The Chair: Thank you to our witnesses. Unfortunately, our time is up, and we have another panel.

There are other members who want to continue the questions. They'll be able to ask the other panellists or they can exit from the table for a few brief moments and perhaps continue some of the discussion outside.

I want to thank each and every one of you for coming and sharing your experiences with regard to a very difficult issue. Obviously there are a lot of components to the issue that as members we have to come to grips with. We thank you for giving us the opportunity to share your experiences. It will allow us to shed some light on our own darkness on the matter.

Mr. Hoferichter, Mr. McLaren, Madam Cyr, and Mrs. Murphy, thank you very much.

We'll have the next panel up in a moment. We'll take a short recess.

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• 1013

The Chair: Colleagues, we're ready to resume with our second panel.

With us we have Mr. Ron Thompson; Ms. Tina Colson-Burke; David Sklar, who has just had his bar mitzvah—mazel tov—and is today accompanied by his father, Murray Sklar, although I gather it's David who is going to be doing most of the talking; and then Denise and Larry Evans.

Welcome to each and every one of you. I noted that you were in the audience during the first panel, so you're already familiar with the way in which we'll proceed. We'll give you about five minutes each.

If you have much more material that doesn't get covered by either your presentation or the question and the answer session, and you would like to share it with us, I want to invite you to submit those presentations in writing to the committee clerk. Those additional observations or thoughts that you might have later on will then be distributed to all committee members.

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If you wish, then, you can think of this as just an introduction. It will be a worthwhile introduction for us, and as I say, anything else will be a bonus.

Last time I started with the last panel member on my left, so this time I'll start with the one on my right.

Mr. Ron Thompson (Individual Presentation): I knew that was going to happen.

Voices: Oh, oh.

The Chair: Ron Thompson, go ahead. You don't have to use all five minutes, but you can go up to five.

Mr. Ron Thompson: Thank you, Mr. Chairman. I'll do my best to go as quickly as I can.

I'd like to thank the committee for even existing, and certainly all the people who are here, including Dr. Martin, who's from my homeland.

The Chair: But he's a Toronto boy.

Mr. Ron Thompson: He represents Esquimalt.

Voices: Oh, oh.

Mr. Keith Martin: It's in the middle of the country somewhere.

Mr. Ron Thompson: I'm here today representing a couple of children who are in Toronto waiting for a few different transplants.

I had hoped to compile some information. My wife and I, as we wait with our child, have been trying to use our time proactively to provide something for you. Unfortunately, our little boy went into heart failure a couple of weeks ago, and we spent a lot of time in the hospital. Providing something became a little less of a priority. I humbly apologize for that.

I did bring a picture, though, if anybody wants to have a boo at the cutest baby in the world.

We're from a small mid-island community on Vancouver Island. Robbie was diagnosed with a heart disease called dilated cardiomyopathy. It's a rare disease in infants. It's a little more frequent in the adult population. The only solution for Robbie is a heart transplant.

We've been in Toronto, living at the Ronald McDonald House, in one room. We share a kitchen with 20 other families. We've been there since September 1.

When Robbie went through his assessment on September 1, it took eight days to do a head-to-toe blueprint of the little guy to determine what type of candidate he would be for a transplant. Dr. Benson and Dr. West, leaders in pediatric transplant technology in Canada, sat us down and told us Robbie was a good candidate for a heart transplant, but he probably was going to die before a donor organ would show up. The last children of Robbie's age waited a year for a life-saving organ.

Now, when we heard that information, our first question, obviously, was why this type of therapy is even offered if there is such a critical shortage of organs. We've had lots of discussion about adult transplantation. It certainly is the greater percentage of the people who are waiting and hoping for organs in Canada, but we can take the one in four statistic, or whatever the statistic is, of how many people are dying waiting for organs and multiply it by a whole bunch in terms of pediatrics.

There's another little girl who's waiting in the hospital right now. Her name is Sabrina. She's 13 years old, and she's waiting for a double-lung and heart transplant. She has been told she is probably going to die before a heart and lung match can be found.

What I would like to emphasize to the committee is that far too many children are dying in Canada, waiting for organs. We live in the best community in the world, where we're from on Vancouver Island. So many people have reached out and asked what they can do. We have asked one thing—that they discuss organ donation amongst their families. Because if they ask you, they're going to ask you at the worst possible time.

We're continually amazed at the lack of information out there. It was obvious to us, when we tried to compile data on how many children in Canada have died waiting for organs in the last ten years, that the information is not available. That, I think, is a benchmark of the state of organ donation in Canada. How can we make effective change if we haven't even collected the data?

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Like other things we're known for internationally, I honestly believe, being the kind of people we are in Canada, we have the opportunity to boast the greatest organ donation rate in the world. That I do not doubt.

We have yet to meet a person in our journey who has said they're opposed to it. The question is always, “Why do we have such a poor organ donation rate?” We do our best to be as proactive as we can, and we ask people to ask another question—that is, “Why do we not have the best organ donation rate in the world?” Let's be proactive about it and get something done.

When I visited little Sabrina, the 13-year-old, on Saturday—she was ventilated—I asked her what she would like me to say to the committee. She said, “Just go in there and kick some butt”. So I'm kicking some butt.

I beg the committee to not only consider the many, many hundreds of adults who are waiting but also keep in mind the dozens and dozens and dozens of children, and their families associated, who are dying waiting.

If you need to be convinced, go to the Toronto Sick Kids hospital and visit the ward. Visit the ICU. Visit the clinic. Meet some of these children who are waiting. None of these children have lung disease because of smoking, or heart disease because of their diet or lifestyle. None of these children have chosen their disease.

Then, for the second part of your trip, meet some of the families who have gone through the miracle of transplantation. Watch them trying to control their kids who have received new hearts, lungs, livers, pancreases, kidneys, and watch them bouncing off the wall.

I beg you, please, let's do something.

Thank you.

The Chair: Thanks, Ron. I hope you can tell Sabrina that you did do what she asked you to do. This has been televised, so if she doesn't believe you, tell her to turn on CPAC and she'll see it happen. Maybe some of your objectives will have been accomplished, because that's obviously transmitted nationwide.

I hope there will be some press coverage of some of your experiences, which will help to convince others who may be out there and who haven't thought about it.

Tina Colson-Burke.

Ms. Tina Colson-Burke (Individual Presentation): Thank you.

Several years ago, I was asked to donate my late husband's corneas. I was asked this question by the pastoral care minister who was on duty at the hospital the night he died.

I had questions as to how the procedure would be conducted, and all my questions were addressed very clearly and succinctly. I had no problem whatsoever signing the consent form. If my husband's other organs would have been of any use, I gladly would have donated those as well.

I was probably very fortunate in the hospital in that the oncologist and psychologist would come and speak to me on a daily basis, preparing me for the inevitable. In so doing, they helped me mentally commit myself to knowing that if I hadn't been asked by the hospital to make any kind of organ donation, I would have done it of my own free will. I can tell you, having been in that situation, it's the one bright thought in an otherwise terrible situation.

My husband had not made any commitment in any sense as to what he wanted done with his organs. It was only toward the end that my husband actually signed a living will, and I was left with the dilemma of all sorts of health care issues. But if my husband had made that commitment, I would have honoured it even if I might have objected to it.

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I have to say that families who cannot make that commitment and sign that consent form should not in any sense be censored or penalized by the law or anyone else. Unless, unfortunately, you've walked in that person's shoes, you cannot understand it, but I do believe we all need to be better informed and better educated.

I think the question about whether we wish to be organ donors has to be continually answered. I personally believe that is through the health care system. Each and every one of us has to make a visit to a doctor's office, and we have to present our health card. At that time, the receptionist or the nurse has access to information about us on their computer system. It's at that time, if we haven't made that commitment, that the question can be asked.

If we're not going to do it in the health care system, I have to say that I personally do not believe that tax returns are the way to go. There are certain things that I personally believe the tax return is used for, and it's not for collecting information for potential donors.

I strongly believe in advertising, education, and constant reinforcement and affirmation that it is important, and that it is the responsibility of each and every one of us to make that commitment in writing so that everyone in need of an organ has the right to a life when ours draws to its close. I think it's the greatest gift each and every one of us can make to one another.

Thank you.

The Chair: Thank you.

David, I understand you want to share some of your time with your dad. You can go ahead.

Mr. David Sklar (Individual Presentation): I didn't know who my donor was, and I wish I could just write a thank you note to his family, saying how much I really appreciated it.

I don't know what else.

The Chair: When did you receive your transplant?

Mr. David Sklar: About a year and a half ago.

The Chair: Maybe your dad wants to share some of that experience with us. Thanks, David.

Mr. Murray Sklar (Individual Presentation): Thank you, David.

A little over a year and a half ago, around October 1997, David received a liver transplant. We don't know what caused David's illness. It was acute, and there was no history of the illness, so it was quite a shock to all of us.

But thank God, and thanks to the great support of the hospital, and above all the donor, the anonymous donor, we were able to quickly receive good news of a liver transplant. I believe we were one of the fortunate few who received a donor transplant that expeditiously, that quickly.

We're so grateful for what happened—and you see, David here is a living testimony of the results of the miracle of liver transplantation—I wanted to share some of my experiences and some of my views with you in the limited time we have available.

There's something I've noticed very recently in Quebec. We take the subway to work, and in it there has been a lot of advertisements for Héma-Québec. There are pictures of young children who have received a multitude of blood transfusions—20, 30, 50. It certainly appeals emotionally to all of us.

Why can there not be some similar advertising, and a budget for such advertising, for donor transplants, for recipients of transplants? My son has mentioned to me on several occasions that he'd be more than pleased to have his picture in any publication that would be willing to have it.

• 1030

Why not create this, as a lot of the other panel members have said, as another method to sensitize the public, to make them aware in a more emotional way, in a more personal way? The example of young children would be very appealing. I can't think of any better way of doing it. I have been told that Héma-Québec has received a tremendous amount of support, a tremendous amount of blood transfusions, as a result of their very recent advertisements.

On a second related matter, in terms of incentives, the main focus of my initial participation here was to offer to the committee some of my views as a person who concentrates on taxation matters. Why not provide a refundable income tax credit, in the terminal tax return of the deceased, or his or her immediate family member, for the gift of life that he or she has given? I'm sure the Department of Finance together with Minister Rock can come up with a quantifiable figure.

Far be it from me to even suggest what an amount should be, but I would like to quote to you from a publication of the Law Reform Commission of Canada, entitled Procurement and Transfer of Human Tissues and Organs, working paper 66, 1992. I'm sure many of you have already read it.

I will quote just one paragraph, page 133:

Thirdly, the current Canadian system of tissue and organ procurement is based largely on the gift ethic. Organ and tissue sales are generally prohibited in Canada. However, if pure altruism is responsible for some of the existing tissue scarcity, then non-altruistic incentives, including cash or tax benefits, might boost supplies. Any such reforms of the existing system, given the values and interests implicated, would seem to be of national importance.

Now, I take note of the fact that one of their recommendations about this tax incentive was essentially rejected. On page 189, where the question was asked, “Should the charitable-gift concept of donation be given practical, monetary effect through the tax law?”, the author said this:

While it is unclear whether such incentives would increase supplies, it is likely that charitable deductions would benefit higher-income taxpayers the most.

Because of that, it was not recommended that they should go ahead with such a system.

But what the author here did not recognize, or did not realize, is that a 100% refundable tax credit incentive would cut across all financial barriers. It would treat the donors, regardless of their income level, with the same credit, whatever that amount would be.

That, in a nutshell, is the recommendation I would make. I know it might be slightly controversial, but I think it's time to take the bull by the horn. If bees could be attracted more to honey, then I suggest maybe we should consider some other non-altruistic method as a way to try to decrease the waiting list for donor transplants.

Thank you.

The Chair: Thank you, Mr. Sklar. I wouldn't worry about the controversy. The committee is here to hear all the suggestions, whether they are controversial or not, and will then try to sort out the ones they can collectively agree upon.

I thank you very much.

I don't know which of you two wants to start, Larry or Denise. I see Denise thinks you should shoulder the burden.

Go ahead, Larry.

Mr. Larry Evans (Individual Presentation): Members of the committee, you might have in front of you a picture of a little girl on a swing. I'm not sure if you do.

The Chair: Yes, it's in the brief.

Mr. Larry Evans: Three months ago today, on November 9, 1998, Denise and I lost our little girl, April. She was on the heart transplant list at Sick Kids. She had been diagnosed with restrictive cardiomyopathy four days after her first birthday. This makes the heart muscle too stiff and doesn't allow it to fill and pump properly. Blood therefore backs up into the other organs.

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On a good day, April felt like she had the flu, and on a bad day, she had symptoms of congestive heart failure. Although she was very sick on the inside, April was a very happy little girl. She enjoyed the swings. She enjoyed the slides, bike rides, skating—anything outside.

We were told there was no cure for this, and our only option was a transplant. This was very devastating news, but at Sick Kids they were doing an average of one transplant a month. They were having very good results with them, so there was hope.

April was placed at number one for her size on the transplant list. They sent us home with a lifeline pager and we were told to wait. Well, we waited for six months. She was number one on the list, and we didn't get one call. April hung on for as long as she could, which was six months.

It's much too late for April, of course, but people are going to die this week in Canada. We have to do something now, before Robbie and Sabrina have the same fate as April.

I think we have to begin possibly in the medical schools, educating the doctors and nurses on how important it is for organ donation. I believe they really do want to help. I can't see why they wouldn't.

Seven years ago, Spain had the same poor rate we have, 14 donors per million. Within that seven years, by training their physicians and transplant coordinators on approaching families for the required approval—where every donor is approached and no one is missed—they now have the best donor rate in the world, of 30 donors per million.

Who makes the request is very important. Some data I have come by shows that in the U.S. and Canada, the consent rate for an untrained requester—and this is usually a physician in a single conversation—is 9%, but where it is a trained transplant coordinator or someone who is trained to ask the question, the rate is 67% to 75% for that family to give the okay to donate the organs.

I think as Canadians generally, we all want to sign our cards. I'm not sure what is the best way to educate Canadians, whether it's on the income tax form, the driver's licence or the health card. I think that should be studied carefully, because it's very important.

But I also think the parents or the next of kin do have a right to know that at the time of the death, they do have an option. They don't just have to pull the plug. They have the option to give someone else their life.

If a person who is 18 years old or older signs their donor card, I think that's their request. As Bert says, that's what he wants to do, and his request should be respected.

I'm not sure how that would work in terms of the law, but to me, it makes sense. At 18 years of age you should be able to make that decision on your own.

Another important thing is getting rid of the financial disincentives. I believe transplants should be another medical procedure. It would be nice to see our health care system under a federal system, but at least in Ontario it should be covered by OHIP, as is normal medical procedure.

I think the most important thing we could do today would be to have the family of person who's on life support in Canada approached, and asked, by a trained transplant coordinator. That alone would probably double our rates in a very short period of time—no one is missed, and the proper person is asking the proper questions.

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Another big thing shows up as a problem, even at Sick Kids, which is probably one of the finest facilities in the world. When April died, all that could be transplanted from her were her heart valves and her corneas. We could donate them. There was a chance of infection with them—we knew that—but we got a letter from MORE about two months after her death, saying that the eye bank was not contacted. So right there....

That's all I have.

Mrs. Denise Evans (Individual Presentation): Larry and I are here today to share some of our experiences and concerns about organ donation here in Canada.

We read the minutes from your last meeting, and we know it was said that on average, 140 Canadians a year die waiting for organs. That's almost three Canadians a week—three people who could have received the gift of life if the donating of organs in Canada was more commonplace.

Our government could prevent a lot of these needless deaths by implementing the required approval, which is also the required referral that somebody earlier had spoken of; it's the same thing. I wrote about it my letter. It's where everybody is approached, and nobody can be just taken off life support.

With this procedure, everyone still has the right to say no to organ donation, but more importantly, everyone is given the choice of donating their loved one's organs and saving the lives of fellow Canadians.

We need to start approaching all families of persons on life support about organ donation, because they have the right to know that the organs of their loved one can save up to six people. That's six life-saving transplants taking place from the generous gift of one person.

When asked, 89% of Canadians said they support organ donation, yet people in Canada are not donating organs. This in part is because people, shocked by the loss of their loved ones, are not thinking about organ donation but the tragic death of their father or sister or daughter.

I've been in the emergency room situation, where you're hoping and praying for your child to pull through, and it's heartbreaking and paralyzing when they don't. This is the time when it's so important for somebody to approach the families. We, of course, are for organ donation, for obvious reasons, but people who don't know about it are not going to be thinking about that. People need to come in and approach these families, because in the Hospital for Sick Children, in all of their experiences, the people who are donating the organs get a lot out of the donation, as well as the people, of course, who are receiving the organs.

We also need to educate Canadians about organ donation to eliminate some of the false myths, such as transplantation being experimental. I had one of April's nurses tell me that she and her husband would never donate their or their children's organs because transplants are experimental. That was someone in the medical field telling me this as she was leaning over my child, who would die if she didn't get an organ.

The vitality rate for the first five years after a heart transplant is 85%. The quality of life is very good, or they wouldn't do transplantation. People need to know that. There are people running marathons and climbing mountains after heart transplants.

One particular woman—I'm pretty sure she was from Quebec—climbed Mount Fuji three months after her heart transplant. She did it to raise awareness of or promote organ donation in Japan, where the rates are very low.

April was born with restrictive cardiomyopathy, but up until her first birthday, when she actually went into heart failure, she appeared perfectly healthy. After her three-week stay in hospital, where April was stabilized, we got to take her home. She was in great spirits, always smiling, cruising around the furniture, playing with her toys, and doing what any one-year-old would be doing.

She was far from being a frail little girl, hospital-ridden, waiting for an organ. April was at home, enjoying a good quality of life with her brother and sister. She was healthy enough to receive a heart at any given time in the six months she waited. My daughter could have lived a full life—gone to school, got married, had children and grandchildren. April could have celebrated her second birthday if a procedure like this had been in place. Instead, Larry and I retire every evening with very sad hearts, dreading the new dawn of facing another day without her.

• 1045

We have some of the world's finest transplant facilities here in Canada, but we fall short when it comes to donating organs. It's like establishing the best food bank worldwide and not giving out the address. We have missed some crucial steps here, and need to look at ways of rectifying our now-critical shortage of organs. We in Canada need to make organ donation more commonplace before more Canadians die, before another parent loses their child.

You were asking about the privacy act in Pennsylvania. It's not only Pennsylvania that goes by this required approval now, it's federal, all across the United States. If somebody is on life support, before taking them off life support the organ retrieval people—I'm sure there are different ones throughout the States—must be contacted, and they then send somebody who is trained, such a coordinator, to approach the family. Nobody just gets taken off life support without the family being approached.

I think that's the best thing, because you still have the right to say no. But everybody has the right to donate organs.

I want to read a quote that I read in The Globe and Mail while we were waiting for a heart for April. It's such a beautiful quote. It said:

Dying is an inevitable part of living. Saving or prolonging someone's life in the process is the best kind of memorial.

And that's it.

The Chair: Thank you, Denise. I'm sure I speak for all committee members when I offer our condolences, even if it's belated.

I think all of you have delivered a very strong message, and we'll get ourselves around that.

Mr. Elley.

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

I want you to know that you're not facing a group of people here today who have no feelings or empathy for your situation. Like Ron Thompson, I come from a small community on Vancouver Island. I have a little girl who has only one kidney. That kidney has severe damage to it, and I would think that in the very near future, unless a miracle occurs, she will have to have a kidney transplant. It's no fun at all having to contemplate the fact that you might lose your child. So we know where you're at.

It's just terrible that it has taken so long in this country for us to get our act together on this very serious issue that faces probably all of us, I would say, in some form or shape, whether it's ourselves or a family member or close friend or someone we remotely know. It faces all Canadians.

So we have no right at all to abdicate any kind of responsibility for it. Certainly those of us on this committee would never want to abdicate our responsibility. However, we've been in this state for a long time, and it's been taking years for us to get our act together.

Ron, you shared something that kind of startled me. I don't know why I shouldn't have known this, but perhaps most Canadians don't know it either. There seems to be some type of cloak of secrecy around, for instance, the number of children who have died waiting for transplants.

Why is that? Is it because we don't want to talk about failure in this country? Have you run into other things like this?

Mr. Ron Thompson: I wish I could come to this table and just present a bunch of solutions. The challenge that's before us is great. Our conversations with the different organizations and doctors....

You have to realize that as a family, we're certainly not in the best state of mind to do the best research. Our minds are usually occupied.

I think there's an issue of conflict of interest, quite often. I know with the cardiac specialists we're dealing with, they have to be very careful about how they talk about organ donation, because the public misconception is vast. I think that is a key we have to address.

• 1050

In terms of the data, I think it really symbolizes the state of our organ donation. We don't have a national body that's collected some good, hard, raw data that we can make really good decisions on.

I'm very fortunate; I've spent my life working in information technology, and I'm actually quite surprised at the lack of information technology when it comes to the medical process in Canada.

So I can't give you an answer to that. I don't know why that data is not there. I wish I could have it, because what I wanted to do was come here and say x amount of children are dying each year waiting for organs, and if that many children died from air bags in a certain kind of car, we certainly wouldn't allow that kind of car in Canada. Unfortunately, the doctors couldn't get me that information on time.

So I don't know. I wish we could have the data.

Mr. Reed Elley: I think what you're trying to tell us—I think Larry and Denise alluded to this too, and David has said that he'd be glad to have his picture on any kind of advertisement that might help this process—is that there is a need to get this out into the public's eye and somehow make every Canadian aware that they can give the gift of life in a situation that might arise.

Is there something we can do, as a committee, to push that, to streamline that, to make that happen in Canada?

I address this to any of the people who have come to share with us this morning.

Mr. Ron Thompson: I'd love to touch on that, if you don't mind.

I work in the media. Unfortunately, the tube is one of our best conduits of information, and we get a lot of information from people who are wondering why this information is not broadcast across the country. It's a national issue, and I think there's an opportunity to do a very effective campaign across television and publications just to break down some of the top five myths of organ donation. Because it's always the same questions we get from people. It's always the same ones. We can eliminate the whole experimental misnomer. We can address what is a suitable candidate. We can start giving numbers.

Canadians want to be proud, and certainly we've established in our wonderful history how generous we are as a country. People want to help. We get phone calls from all over the country every single day from people wanting to help.

The Chair: Denise Evans.

Mrs. Denise Evans: I agree with Ron about commercials. Actually, right now there's somebody working on a commercial with April in it. Somebody who read about her in The Toronto Star approached us about making a commercial. The fellow who worked in the film industry and who approached us is a recipient of a live kidney, from a live donor, and he's very pro-organ-donation. They're not being paid for doing this. There's an agency working on it. They're going to show some home video clips of April, and say at the end how much it matters, and that this is what's happening.

I think it's very important that people see the flesh, and they know. Just from the people April touched in her short life, I know those people are all very pro-organ-donation now. They realize she could have lived a long life had more people donated organs.

So I think commercials are a great idea. Think of commercials for recycling, drinking and driving; they've been very effective.

The Chair: Thank you very much.

Mrs. Redman.

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

I would like to say that I appreciate how compelling each and every one of your testimonies were, and how productive the suggestions you've brought forward have been. I really appreciate it.

I wanted to zero in, Ms. Colson-Burke, on your description of somebody coming in—I believe it was the psychologist—to talk to you over time. I sense that's essential, especially when we're talking about children who don't file income tax returns and don't have a driver's licence. This obviously is going to be a parental or guardian-type decision.

Can you talk a little bit about the team or the person who came to talk to you?

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Ms. Tina Colson-Burke: Yes, most certainly. What I'd like to say is that, unfortunately, because of different things that have happened in the last few years in the health care system, a lot of the people who would have fulfilled the role that the psychologist filled have left the hospital system. So there's a gap there that needs to be filled.

Basically, the role that the psychologist played with me was to talk to me so that I would be psychologically ready for my husband's death. Because even though we know our loved ones are very ill, and they are really not going to recover, we all secretly hope that a miracle will take place.

So in talking to me and discovering who I was, and my belief system, and the relationship I had with my husband, she and I were able to talk about certain things. In doing so, not only was I prepared to accept and actually be able to say out loud that he was going to die—that's the hardest thing, the admission to yourself that your spouse or your loved one is not going to get well—but I was also able, by talking about preparing myself and letting go, to talk about other things and to give serious consideration to what I wanted to do.

Organ donation is something that I have always felt I wanted to do, personally, and I felt that if anything could be salvaged, then I wanted to give whatever gifts there were, and pass them on. Unfortunately, there wasn't much to salvage, but what there was did benefit two people who were then able to have the give of sight.

Mrs. Karen Redman: That's terrific.

I have just one additional question.

Mr. Thompson, you talked about being in the media. When you talk about statistics, are you suggesting that we as nation should say, all right, this is our target, and we're working toward either being the best in the world or matching Spain's statistics? You talked about the fact that it can be compelling to people to have that kind of information.

Mr. Ron Thompson: Yes. At Christmastime we sent out, to our hundreds of friends and relatives, this letter of how Robbie was doing and how we were coping. Three-quarters of it contained some of the factoids of organ donation in Canada.

We had no idea that little letter would have such a huge impact. People were writing us back, and a lot were actually quite livid, actually, about some of the facts—the hospitals not being reimbursed for the extraction, for example. People have been jumping up and down about that one, and the fact that we have this low organ donation rate.

On that alone, if we could just put that up on a screen for 15 seconds during Hockey Night in Canada, you would find that the country would jump.

Mrs. Karen Redman: Thank you.

The Chair: Madam Picard.

[Translation]

Ms. Pauline Picard: Thank you for being here today. Your testimony is extremely moving. You have truly revealed the heart of the problem associated with organ donation.

Mr. Thompson, do you believe that there are still myths about organ donation, religious myths, for example? When I was young, the particular branch of Christianity which I practised propounded belief in the resurrection of the body. There was a kind of myth about this. At the time, I did not know enough to realize this made no sense, but for some people, donating the organs of a loved one might be a problem on that level. Do you think such myths are still among us, and is it not perhaps time to help people understand that organ donations should be viewed in a positive light? We should be telling them that, in dying, they can give the gift of life to someone.

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[English]

Mr. Ron Thompson: Oh, without a doubt. I think one of the neatest articles that we've seen in the paper recently was for clergy heads from different faiths to sign their organ donor cards in public. I think it was very brave of them to do that. I think the ethnic and religious communities certainly can be key players in providing life for people.

Something I'm sure the committee already knows is that the people who face the most difficult challenge in transplantation are the minority groups because of the blood match, and quite often they're the most reluctant to donate. It's only through education.

We've yet to find any religions or ethnic backgrounds that state anywhere that organ donation is a wrong thing to do. I think Larry and Denise actually have some information on that.

But I agree; I think we need to show people that transplantation is a way of life now, and it's going to affect more people in the future as we move into the millennium.

[Translation]

Ms. Pauline Picard: Thank you.

I have a question for David. David, please tell us what you experienced when you learned you were to have a liver transplant. How did it happen? What did the people around you do? Were you afraid? Did people reassure you? Did people explain exactly what would happen?

[English]

Mr. David Sklar: Well, I was so sick, and getting sicker, that I don't remember when they told me I was going to have a liver transplant. I remember my mom told me that. It was the day before, and I was getting all prepared. I was so sick I can't remember when, or what was happening.

So I don't remember; I was sick.

[Translation]

Mr. Murray Sklar: May I add something?

Ms. Pauline Picard: Yes.

Mr. Murray Sklar: The whole thing happened very quickly. David became ill around the end of September. Initially, doctors did not seem to know what was causing his illness. But towards the end, he began to have jaundice. It was obvious he had some kind of hepatitis. Doctors did not know exactly what kind of hepatitis he had, but his liver function continued to decline. They did a biopsy, and saw he had a serious liver disease. At the start, liver transplant was brought up only as a possibility, but at the end it became a necessity. Thanks to the efforts of doctors, particularly Dr. Jean Tchervenkov of the Royal Victoria Hospital, whose work I would like to publicly acknowledge, David was first on the list in Quebec, and two or three days later, after a phone call by Dr. Tchervenkov, was first on the list in Canada. With God's help, and thanks to the doctors' efforts, he received an organ very quickly.

Ms. Pauline Picard: Were you given support by health care professionals?

Mr. Murray Sklar: Yes. Obviously, we—the entire family—were in shock. I remember one nurse. I was in tears. I started crying when I learned that David would definitely need the transplant. I remember one nurse, who took me into a small room and assured me a liver would be found for David. She said that our doctors were among the best anywhere. She said: "Don't worry, we will find a liver quickly." Luckily, they did.

Ms. Pauline Picard: Were you given support before and after the operation? Were health care professionals able to give you all the information and support you needed in your situation?

Mr. Murray Sklar: Yes, particularly after the transplant. The staff of the Montreal Children's Hospital were great. Transplants for children there are rare; most of them are done at the Royal Victoria Hospital. They had a private room for David. Obviously, he was in isolation and had a nurse 24 hours a day, before and particularly after the operation. At the beginning, however, things happened so quickly that we only learned a transplant would be absolutely necessary three or four days before it happened.

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Ms. Pauline Picard: Thank you very much.

The Chair: Thank you.

[English]

Mr. Martin.

Mr. Keith Martin: Thank you very much.

Thank you very much, all of you, for coming here today and showing the courage, under very difficult circumstances, to give your testimony.

Ron, we certainly hope Robbie and Sabrina receive the transplants they require.

You've all articulated the tremendous difficulty that exists right now, particularly in pediatric transplantation and in the need for parents to actually make some decisions, perhaps beforehand, on behalf of their children.

I want to ask Mrs. Colson-Burke something. It's to do with what was said before by Mr. Sklar.

I would submit to you that it's not a problem of Canadians not wanting to give their organs. The big problem is in neglect right now, and not marking it off. We have to find a way in which we can get more people to do this. Not everybody actually goes to their doctor. There are a lot of people who don't go for extended periods of time. They have a certain problem when they're going to their doctor, and they may not want to talk about organ donation when they see their physician for the problem they're going for.

What is your opposition, for example, to having an opportunity on the income tax form that every year people can go and have an opportunity to check off whether or not they want to be an organ donor? Because the adults of the family are going to be doing this, they could also put down for their children, as their guardians, whether or not their children should or shouldn't be organ donors. They can discuss it with their families at that time.

Ms. Tina Colson-Burke: First of all, you're absolutely right; not everybody does have to go the doctor. Unfortunately, not everybody files a tax return, and sometimes people who file tax returns and may have a tax liability do not necessarily address the payment of that tax liability either, sir.

So while in essence it's a good suggestion, I think in practice in may break down for that and other reasons.

As well, I would be very concerned about parents giving their written permission on a document like a tax return. Tax returns are filed once a year. There are times when families unfortunately break down and separate. If a parent filing a tax return is not the custodian of those children, and yet indicates on the tax return that they have given their permission, in the event of their children's death, that the organs of those children be used in transplants, what might be the legal repercussions of that?

I think also that whatever other information may be provided on tax returns for the needs of ascertaining taxes to be paid or tax credits to be given, the purpose of a tax return is for us to declare our income, and tax payments to be made or credited accordingly. I think a lot of people would have problems with a tax return being used as a vehicle for one-stop shopping. Taxpayers may feel that Revenue Canada perhaps has access to too much information as it is, based on the questions that are asked on a tax return.

The other question—or problem, perhaps—is that Revenue Canada will be becoming an agency. In doing so, we do not know what may happen several years down the road in terms of the filing of tax returns, or the gleaning of information provided on those tax returns. We don't know where that may end up and what kinds of controls may or may not exist. I think it's a serious problem.

As well, at the time when the average taxpayer is filing their tax return it's a very busy period within Revenue Canada to process those tax returns on a timely basis. There are several months every year where people are brought in for a specific period of time. They are not permanent employees but are brought in to assist in this process. Then later on in the year there is a period of time when reassessments take place. That is another busy time of the year.

• 1110

It's very possible, assuming the form is being used for the consent of organ donation, that the information may be overlooked in the hurry to process the actual tax information.

As well, downsizing is a common fact of life. I'm not going to get into that and get off topic, but that means fewer people are responsible for the same volume, or growing volume, of work.

So I personally have concerns. I'm not sure how effectively these controls can be put in place to protect the rights of individuals—and the legalities—and also ensure that the information is gathered correctly and on a timely basis.

As well, what process would be in place if somebody files a tax return and then in the interim decides they don't want to be a donor any more? What other avenue would be open to them to withdraw their consent?

Thank you.

The Chair: Thank you very much.

Ms. Minna.

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

I wanted to go back to Ms. Colson-Burke, simply because from everything I've heard so far, from the previous submissions and of course this morning, it seems to come down to a number of things. One is information across the country, awareness that it's not at experimental stages and what have you. The other is people being exposed to the concept, or even beginning to think about the possibility, of signing their names somewhere or giving permission. The other, of course, is at the hospital, having a specialized team that approaches loved ones who are waiting for the person to die to be able to begin to deal with that issue. It seems these steps are very important.

I want to go back to something you said with respect to family doctors. In this case, talking about children, they can't sign health cards and what have you. The reality is that you're dealing with parental permission.

Going back to MDs and doctors, everyone has a pediatrician when their children are born and raised. At some point children go to doctors. They have flus and all kinds of things. Even though adults may go to a doctor after two or three years, not regularly, children tend to be there much more often than adults.

Would you advise that the family doctor, who knows the family fairly well, would approach this topic? It's sensitive, and the parent who has a healthy child obviously doesn't want to discuss it, but from an educational perspective, the doctor could to some degree sensitize them so that if they ever find themselves at any time in a hospital where an expert team of sensitive people approach them, it wouldn't be the first time.

Yes, they are shocked, but it's something they've discussed before. It's something a professional has discussed with them. While nobody likes to discuss these things, it's part of the realities of life.

I'm wondering whether you think there would be some way for there to be some protocol for doctors—I'm not sure I would say it should be mandatory—to follow with their patients, with the adults or the parents of children.

I wonder whether you think that would be a protocol one could put in place.

Ms. Tina Colson-Burke: I think it's very appropriate. I think perhaps through every stage of life we should be constantly educated and reminded and have the reinforcement of the necessity, and the responsibility to one another, to share that gift of life.

From my experience, it was addressed very humanely and very kindly. I took no offence to the way I was treated or approached. The minister who was actually the one who came into the room and spoke to me about my consent did it in a way that caused no offence whatsoever.

I think it can be addressed very sensibly and very compassionately. It's only because we have a fear of death that we shy away from this.

• 1115

So it's an education process, and everyone, including our medical caregivers, can play a very proactive role in it.

Ms. Maria Minna: Just one more question, Mr. Chairman.

Mr. Sklar, with regard to your idea of a tax incentive, I must say, I personally react to it somewhat negatively. You did say it was controversial.

It's one thing to have tax incentives in other areas, but organ donation seems so personal. The first thing I begin to think of is, well, what value do you put on it? Do you put a value on the heart and liver that's slightly different from the kidney, the cornea, or the tissue? I mean, we could go on. The other day we heard all kinds of various aspects of the human anatomy.

So I have some difficulty with that, simply because of that. I'm not sure how you'd do it.

As well, there's the impression it might leave that it's something that is taxable, and somehow tied to finance.

I wonder if you could expand on that a bit. I imagine you've given it some thought.

Mr. Murray Sklar: Yes, I know it is a concern. I'm going to the federal budget lock-up next week. I can tell you, from my experience attending many of these here, that if you want information and education quickly, instantaneously, if you have a budget proposal to give a particular incentive for donations on death, or post-mortem donations, then in my view you will get that information delivered instantaneously, through all the major accounting firms in cities across Canada. The newspapers giving budget information will pick it up, and that will give information and education to the public.

Now, I agree with you that the quantum mechanics may be a delicate issue. How do you quantify an amount? But why can't there just be an arbitrary fixed amount, across the board, of x thousands of dollars for the deceased in his tax return?

If the Canadian government could give $400 to each student through the student program in last year's budget, why can we not quantify x thousands of dollars for a donation, regardless of what particular organ is donated? What do we have to lose? We have everything to gain. We have life to gain for children. We have the possibility of that child, that adult, receiving an organ and getting back to having a worthful life, one where he or she could contribute back to society the receipt that was given by the donor. I see it as just a positive thing.

As I say, you can attract a lot more bees with honey than with vinegar. If you're in the position of a family waiting for a transplant, you will not turn your nose and be that concerned about the financial incentive. You'll be so grateful to get a donation that you won't care about the fact that it may affect the sensitivities of certain people about the idea of giving a donation. Just be a parent waiting for a donation and you'll understand what I'm saying.

The Chair: Thank you, Mr. Sklar.

That brings this panel and the questions to an end. I want to thank all of our panellists for coming and sharing obviously very personal experiences. Judging from the people around the table, it was most moving, and I hope it has a lasting impression.

Once again, Larry and Denise, our support and our condolences. Thank you for coming.

Murray and David, thanks a lot. David, you're one of the happy people, and I hope there's a lot more like you down the road. So mazel tov on two counts.

Tina Colson-Burke, thank you very much for your composure and for your insights.

Ron, I hope things work out for Robbie, and give our regards to Sabrina as well.

At our next sitting we will have the procurement agencies, so some of the questions raised today will be raised again next week with obviously a different slant. So on behalf of all committee members, thank you very much.

We have other business to attend to, but I'm going to adjourn for a couple of minutes. Members may wish to conduct a private conversation—one that won't go beyond two minutes.

I thank you very much.

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• 1128

The Chair: Order. Would the committee members come back to the table, please.

I want to thank the members of the press and the media. We will welcome you again, at another time—Thursday, same time, same station.

I want to thank all the committee members for their patience. I didn't want to rush anybody out, but I thought from the perspective of the work we're doing that the attention the media and the press were giving to the topic merited the indulgence of time. Especially with the very powerful message that some of the witnesses provided, I thought there should be ample opportunity for public questioning of what was going on.

I have a couple of motions before us. The question is whether or not we should go in camera. I guess I have to be guided by you.

• 1130

Two motions are in order. I received one at beginning of last week, and one obviously toward the latter part of the week. But I'd hesitate to start discussions on the motions and then find someone asking me to go in camera, cutting the discussion halfway.

Mr. Lynn Myers: Mr. Chairman, I move that we go in camera. I think that's appropriate.

Mr. Reed Elley: Mr. Chairman, I understand from Beauchesne's that you have to give 24 hours' notice to go in camera, and we have not had that.

The Chair: That may well be, but the advice we have from our resident expert here is that as long as the committee agrees, we can do it when it comes up.

I know there will be some decisions that will be coming out of the meeting, in camera or not. I guess the issue is whether or not that should be public. I think the decisions will obviously be public. I don't know whether there's any objection to whatever decisions coming out being public—and there shouldn't be—but the discussions may involve a back and forth of some negotiations. That's the main purpose of an in camera meeting.

I hope you will accept my interpretation there, Mr. Elley.

I'm going to entertain a motion to go into in camera discussions. We don't need a seconder for Mr. Myers' motion.

Are members in favour of going in camera?

(Motion agreed to)

[Proceedings continue in camera]