HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, March 2, 1999

[English]

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The Chair (Mr. Joseph Volpe (Eglinton—Lawrence, Lib.)): Order.

Perhaps I could have the attention of colleagues for just a couple of minutes before we turn our attention to the business at hand. We're going to have to wait a moment or two until the video is prepared, but I wanted to raise an issue with colleagues.

I'm looking for some direction and guidance. We have had a substantial number of potential witnesses contact the committee, asking to be part of this study. That's typical of what happens when a parliamentary committee undertakes a particular study. All stakeholders want to be part of the process, and want to have input. On occasion, some of those people don't call us, so we make an effort to reach out to everyone as part of our mandate.

A couple of weeks ago, a group of presenters suggested that the model the committee ought to look at, from the point of view of comparisons, is the new Canadian Blood Services, the Canadian blood agency that replaced the Red Cross. It is the largest tissue “harvester”, if I can use that term, in the country, and is the only one that has a truly national breadth and scope.

We made efforts to contact them on February 5. There's been some confusion in terms of messages between the executive and the board of directors of that agency. The latest response we have received is that they might not be able to meet with us.

I think they have something valuable to offer us, and I'm looking for the committee's suggestions with respect to the next phase.

We can do one of the following. One, we can write the board of directors and ask them to ensure they are ably represented by their executive, before our committee, at a time that we have already established.

Two, we can write the executive again and suggest to them that we have x number of dates left. As I recall, for colleagues around the table, the 24th is the last day we sit for the purpose of hearing testimony.

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Alternatively, we can forgo all niceties and advise them that they will be present at a particular date.

The clerk reminds me that the appropriate term is that we can “summon” them to be here. I was trying to be a little more kind.

Now, I only want to spend a moment here. I've given you three directions. Does anyone have a comment?

If not, then, I'll take it as an indication that you want me to be as firm as possible in ensuring that they'll be here. We'll do that.

Ladies and gentlemen, thank you very much for your attention. Pursuant to Standing Order 108(2), we'll continue with our study on the state of organ and tissue donation in Canada.

We have today a series of witnesses. Let me make a quick introduction of the ones who are here.

Over on my left is Rabbi Reuven Bulka; Dr. Aaron Spital, immediately before me; Dr. John Yun, immediately to my right; and Dr. John Beamish Dossetor, over on the extreme right.

That's purely geographical, with no political allusion.

Rabbi Bulka has to leave at about 10.30 a.m. We're going to try to be as accommodating as we can, so I'll let him go first.

Gentlemen, typically what we do here is have presentations of about five minutes. There's a little bit of flexibility in that, but I hope you'll stay as close to that five minutes as possible. The rest of the time is devoted to questions and answers with colleagues around the table. For us, that's sometimes the most important aspect of you presentation here, with all due deference to the expertise you bring us. I'm now going to leave it to your good conscience to engage members on both sides of the table.

Rabbi Bulka, would you please.

Rabbi Reuven Bulka (Individual Presentation): Thank you for the opportunity to share some thoughts with you.

My first comment is to congratulate all of you on this momentous initiative, which is so vital if we are to address what is a major health challenge and major moral challenge as well, to my mind.

We as Canadians are generally very nice people, but there are two levels of nice. One is the passive, do-no-harm nice, and the other is more exalted, but also more difficult to actualize. That involves going out of your way, just a bit, to be nice.

How do we score on this level? If organ donation is the gauge, we rank much lower than most industrialized countries. We are also quite low on blood donations, with only 3% to 5% of Canadians being blood donors. These are going-out-of-the-way, nice gestures, and we are not as high on that as we could and should be.

People in Canada die waiting for organ donations. Our pressing needs are not being met by the population at large.

It is difficult to legislate goodness, obviously, but we can make goodness more attractive. Our approach needs to be multi-faceted. We need to launch a frontal assault on the mindsets of Canadians to the point where signing an organ donor card—and, yes, donating blood—is almost automatic.

Not only the government but all levels of leadership in society have a role to play in this. At our branch of the Kidney Foundation, the eastern Ontario branch, we brought together religious leaders who signed a giant organ donor card. We held a news conference and effectively debunked the myth that religions do not favour organ donation, because the opposite is the case. Religion in general allows, and even encourages, such an endeavour.

In cooperation with and having the support of the Ottawa Citizen, we published a brochure on organ donation, copies of which are being made available to this committee.

It would set a wonderful example if, at every level of government, all federal, provincial and local politicians signed their organ donor card in a highly visible, public manner.

The places where such signing is made possible for the general public need to be more accessible. Organ donor statements could be on tax forms, on the back of lottery tickets, passport applications, etc.

These are promotional activities to encourage organ donation. There are many more. I have noted just a few.

There are also major policy initiatives, aside from the need for a centralized and co-ordinated effort, that could be of immense help. I would have no problem with offering, for example, tax incentives to encourage the signing of an organ donor card and offering a reduced estate tax rate for the family of an organ donor.

I have not worked out the fine details of such a proposal, but the general principle is one worthy of further serious consideration.

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This tax credit can be justified based on the significant health care savings that accrue from kidney transplant, for example, as opposed to dialysis.

Some may argue that by offering tax incentives to the estate, we are robbing organ donation of its purely altruistic activity. I concede the point, but would argue that we should not allow the lives of people to be sacrificed on the altar of pure altruism.

Finally, the mindset in approaching organ donation may need a revisit. I speak specifically, and not officially, about the need to have family agreement to carry out the donor's wishes to have organs donated following the donor's death.

It is undoubtedly vital to convey the donor's wishes to the family, and as soon as and as nicely as possible, but following that, it may be more appropriate to follow through on the donor's wishes even if the family refuses its consent.

With the crisis we are facing—the critical shortage and the pursuant loss of precious life—we are forced to asked whether the present protocol of gaining family consent is justifiable.

We could avoid some of the controversy in this matter by notifying the public of this basic change in policy regarding the carrying out of the donor's wishes, and why the change is being implemented. This would effectively change the nature of any conversation between donor and family, with the family realizing the finality of the donor's wishes.

Such a change may not be possible overnight, but it is worth contemplating as a necessity in our emergency situation. The short-range fallout will hopefully be worth the long-range life-saving.

This committee is all about saving lives, and about creating a life-saving and life-enhancing mentality amongst all Canadians. I hope these ideas, added to the many others you receive, will help in this vital endeavour.

Thank you.

The Chair: Rabbi Bulka, thank you very much. You've been very generous with your time. I guess you took me seriously when I said I was going to take time off you and give it to Dr. Aaron Spital, who's come from Rochester.

Colleagues, I should have indicated earlier on that today, of course, we taking a look at the bioethical and moral dilemmas associated with organ donation and transplantation. I'm glad Rabbi Bulka started us off on that plane.

Let me now welcome Dr. Aaron Spital, from the University of Rochester, nephrology unit, where he is an associate professor of medicine.

Dr. Spital, we have a copy of all of the slides you're going to show on the screen.

Dr. Aaron Spital (Associate Professor of Medicine, Nephrology Unit, University of Rochester): Thank you very much. It's certainly an honour to be here.

I'd like to begin by pointing out that it's about 45 years since the world's first successful kidney transplant was performed between this pair of identical twins. Since that time, much experience has accumulated with the use of living donors. However, the practice, as valuable as it is, remains controversial.

I've devoted much of my professional life to studying ethical issues in this area, and I'd be happy to answer questions on it. However, I'd like to devote most of my comments to a plan designed to facilitate public commitment to cadaveric organ donation known as “mandated choice”.

The driving force behind this proposal, of course, is the severe shortage of organs, which we experience in the United States as well as in Canada and most countries around the world.

This next slide—and I think this is in the notes I gave you—shows the situation in the United States, demonstrating the progressive rise in the waiting list, which is now, just for kidney alone, almost 41,000 people, while the number of renal transplants performed in the United States remains relatively constant.

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This situation leads to much morbidity and mortality among needy recipients with a variety of types of end-stage organ disease, but the most tragic thing is that much of this morbidity and mortality is preventable, since we are recovering organs from at most about half of potential donors. So every day, life-saving cadaveric organs are continuously being lost.

We need to ask what accounts for our low rate of procurement. One of the things that's very important to recognize here is what our system is, and how it works.

We operate, in Canada and the United States, under opting-in systems that of course require explicit consent before organs can be removed and used for transplantation. Now, while the law gives each of us the right to make legally binding declarations regarding our wishes about posthumous organ donation, in practice the decision almost always falls to the family to decide, and as we see, the need for family consent is an important barrier to organ procurement.

Because donors often are young people who have died unexpectedly, families are often devastated and in shock. Under these circumstances, clear thinking may be impossible. Further compounding the problem is that the wishes of their loved ones are frequently unknown. As well, of course it's very stressful for hospital staff to approach grieving families to ask for consent.

It's not surprising that as a result of this mixture of grief and confusion, there are very high rates of refusal among families, with at least 50% of families, probably more, saying “no” when asked.

This actual behaviour, interestingly, contrasts with public opinion polls showing widespread support for organ donation. This is shown in polls in this country and in the United States. The majority of people say they would want their own organs donated after death. So this discrepancy between what we see in actual practice and in abstract responses suggest that perhaps if the stress of decision-making could be removed, consent rates would be higher.

How can we achieve that? Well, the way to do that is to eliminate entirely the need for family consent. We can accomplish this by having all competent people decide what they want done with their organs after death and then being sure that those wishes are honoured.

Can we justify such an individualistic approach? The Council on Ethical and Judicial Affairs has said that the individual's interest in controlling the disposition of his or her own body and property after death suggests it is ethically preferable for the individual rather than the family to decide to donate organs. This view is supported in the law as well.

Similarly, Professor Carl Cohen, at the University of Michigan, has said this of the family consent process: “We ask the wrong persons, at the worst possible times, what they should never have been asked at all.”

If Professor Cohen is right, how then can we achieve this individualistic approach? Mandated choice is designed to achieve precisely this. Under this program, all competent adults will be required to address and decide the question of posthumous organ donation prospectively. One would be able to change his or her mind at any time, but a decision made would be binding, unable to be overridden by the family unless the individual had granted the family veto power.

What are the advantages to this approach? First, because it would no longer be necessary for family and staff to address this issue, the great stress that now occurs during the consent process would be eliminated.

Second, decisions would be made in a relaxed setting, where thinking would be clearer.

Third, it would increase public awareness of the great value of and need for organ donation, and may well be one of the most effective educational tools we have seen. It would eliminate delays resulting from the need to obtain family consent, which can jeopardize the quality of organs.

Finally, all of this could be accomplished without compromising altruism and autonomy, which are the philosophical foundations of our current approach.

What are the concerns with this approach? One of the concerns is that it is slightly coercive in that it forces people to make a decision about something they have not had to make a decision about before.

Barbara Katz pointed this out when she first suggested this plan 15 years ago. She said:

The law often permits minor burdens when the benefit to be procured...is great. Since the gain to the public is likely to be substantial...we as a society can legitimately decide to tolerate the negligible intrusion on an individual's privacy presented.

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Would families accept being excluded from the decision-making process? Well, the Council on Ethical and Judicial Affairs has pointed out that it is unlikely that the promotion of individual autonomy would be objectionable to the families of organ donors. The vast majority of families see their role as safeguarding their loved ones' wishes. To support this claim, they point out that in a recent poll, 93% of families said they would honour a family's wish to donate organs.

Of course, the real question is, would mandated choice really work? We don't know the answer to this, since there have been no actual trials of this proposal. However, there are attitudinal data available, and these attitudinal data are supportive. They show that the vast majority of the public believe that the individual rather than the family is best suited to decide to donate organs, and that the family should not be able to override their loved one's wishes in this area.

There have also been two studies specifically designed to look at mandated choice. In the first study, 65% of the respondents said they would support enacting a law of mandated choice. In the second study, a nearly identical percentage said that if such a law were enacted, they would sign up to say yes. A smaller percentage wasn't sure. If that small percentage of undecideds could be convinced to say yes under mandated choice, we could conceivably have as much as 75% of the public as committed organ donors.

In conclusion, mandated choice appears to be an acceptable method to obtain consent for posthumous organ donation that would likely increase the rate of consent by: eliminating the family consent barrier; transferring the decision to a relaxed setting; facilitating the awareness of the great value and need for organs; and protecting individual autonomy.

This has been endorsed by the Council on Ethical and Judicial Affairs of the American Medical Association, United Network Organ Sharing, and the Harvard Law Review. While the problems with opinion polls are well known, I think the data are strong enough to suggest that we should at least give it a trial in a pilot study.

Thank you very much.

The Chair: Dr. Spital, thank you very much. We had some problems with the audiovisual equipment, and I'm sorry, but we lived through it.

I'd now like to go to Dr. John Yun, who comes from Richmond, B.C.

Dr. John Woo-Sup Yun (Individual Presentation): Thank you.

I may be the sole dissenter in the whole enthusiasm for transplant. I have decided to give this presentation to explain my ambivalence toward open transplantation, specifically that of heart and lung transplantation. I only recently have come to change my opinion about the whole process of organ transplant. I'll describe my personal experience in the process of arguing against transplantation.

When I was an intern at a busy trauma hospital in 1988, I had the opportunity to keep alive brain-dead patients for organ transplant. At that time, there was always an aspect of excitement in adjusting the ventilation support machines, or so-called life support machines, and in making sure the urine output was maintained to perfuse kidneys with powerful drugs and fluid. One had to monitor carefully the electrolytes in varying aspects of the body to keep the donor alive, or else the whole thing would become futile. So-called brain-dead patients needed all the skills of intensive care to keep them alive.

Now I am an oncologist, practising an entirely different kind of medicine. Instead of spending my time in ICU, I spend much time in the palliative care unit, or PCU. I counsel my patients about life and death issues. Cancer patients deal with death all the time. Most people, even in difficult times, find life to be precious, and ending it unnaturally and prematurely to be strongly repulsive.

I am a practitioner in a multicultural community, with people of varying backgrounds—Caucasian, Chinese, East Indian, Christians, Buddhists, Sikhs and so on—but all of these people find life precious and worth protecting.

Only recently have I begun to re-examine the whole question of organ transplant. The arguments for transplant sound very life-giving; often it is called “the gift of life”. It's rather appealing to think one can give part of oneself so that someone else can go on living.

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The problem started, however, when I began to think about the life of the donor. I assumed that the donor was dead. Once dead, no one will object to any way we dispose of the body, as long as it is respectful. But now I believe those patients I looked after as an intern in ICU were alive.

As I said at the beginning, I stayed all night in ICU to keep a patient alive. There was no objective difference before or after the patient was declared brain-dead by a neurologist or myself. Now I realize that “brain-dead” is a diagnosis instituted under certain criteria with organ donation in mind.

Often when we withdraw the life support machine and IV medication, death will ensue, and follow quickly. But that's my whole point; only when we stop life support measures does death ensue. But is there more than one death—brain death and real death?

Is brain-dead the same as dead? I answer “no”.

Is imminently dying the same as dead? I answer “no”.

Would the consent of the dying patient make the ending of life justifiable? I answer “no”, as I do in the case of euthanasia.

Consider the brain-dead patient. There is an objective difference between the death that follows stopping life-support measures and the death caused by removing a heart or lung. Yes, even if we obtain full consent prior to the patient becoming unconscious, even if we get the family on side, the difference is that in the former case, stopping life support, the body follows its natural course. In the latter, removing a heart or lung, we directly intervene.

Likewise, there's a difference between someone dying from a car accident and dying due to the removal of a heart or lung. The latter action requires direct intervention.

It is interesting to note that Kevorkian wants to use his clients' organs for transplant. In his mind, once his client gives his consent to have his life taken away or to be killed out of mercy, the next step of using the organ is not an ethical dilemma. Most people find this scheme rather uncomfortable, if not contradictory. Kevorkian's last lawyer, apparently a supporter of euthanasia, ended up quitting because he was no longer able to stomach Kevorkian's zeal for organ transplant from the people he had killed out of mercy.

Consider the term “organ harvesting”. What does this metaphor imply, that the donor's body is some kind of plant from which fruit—human organs—can be obtained?

I believe using another person as a means, even for a good cause, is wrong. We have to treat persons as ends in themselves. Donors cannot be thought of as a means for organ transplant. We must not change the definition of death for any other means, to get more organs to harvest. We must not jump to the conclusion...the dubious definition of death.

When all the functions of the brain cease, is one less alive? How about when the brain only partially functions? Is one less alive?

We live in a multicultural society. In my practice, many of my patients teach me their meaning of death, which is different from mine.

For example, Buddhists believe that after all the signs of life are not apparent—heartbeat, breathing, or movement—many hours can pass before the spirit leaves the body. If there's any attachment to current life, such as desire or pain or interference, this can rob him or her of eternal peace.

I receive requests to leave the body in the same position, same room, same clothes, for hours after apparent death. Many cultures object vigorously to suicide and the mutilation of the body. The western scientifically and technologically driven culture should not think itself superior to these cultures.

I urge you to resist all temptation to liberalize the definition, legal and otherwise, in terms of the availability of organs. A person is either dead or alive, and many people have different meanings for that. Please respect that.

I have outlined my personal experience in my change of opinion in organ donation, when I scrutinized my own assumptions and the definitions I took for granted. Once I accepted that brain death was not death, the whole process was brought into doubt.

Thank you.

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The Chair: Thank you, Dr. Yun.

I'd like to turn now to Dr. John Beamish Dossetor.

I must say, Dr. Dossetor, while I was perusing your curriculum vitae I noted that you left out one very important element—namely, that you have a progeny now in government disseminating some of the wisdom you've accumulated over the years.

Dr. John Beamish Dossetor (Individual Presentation): Yes. Thank you.

I wish to thank the standing committee for the opportunity to address it for a few minutes this morning. It's a privilege for me. I've spent a major part of my career in this field, and its problems are a major interest and concern for me.

I was principally involved in transplantation for kidney failure, but I changed my career into bioethics in the mid-1980s, and I have become progressively frustrated by our inability to increase the supply of donated organs from persons who have died with primary death of the brain.

I would like to enter into discussion with Dr. John Yun on that at some other time.

The Chair: You could do it here, actually, Dr. Dossetor, except that our time's going to be limited.

Go ahead.

Dr. John Dossetor: I have seen some summaries of many of the views that have already been presented to this group. I am not going to repeat those with which I'm in strong favour, though I happen to be in strong favour of Dr. Spital's point of view of mandated choice, which I personally have espoused for a couple of decades.

I certainly believe this committee may be a wonderful opportunity to improve the situation in Canada. I intend to spend my few minutes stressing certain parts of the brief that I previously have submitted to the committee.

I will now address the question of donation from persons who have died other than by primary death of the brain.

I can remember the situation as it was in the 1960s, prior to the clarification of the brain death criteria. At that time, traditional criteria were used for the diagnosis of death—arrest of breathing and heartbeat. Many different dying situations were reviewed by the team. We found that periods of up to an hour and a half of delay between the declaration of death and removal of kidneys was quite compatible with later excellent recovery of kidney function.

When the agreement of brain death was agreed upon in 1968 to 1970, from the Massachusetts General committee on this, it became acceptable to remove organs while the heart was still beating in that small group of dying persons who met those criteria. We stopped looking for organ procurement from the large proportion—about 90% of those who die—of persons dying with traditional criteria of primary arrest not of the brain but of the cardiac and respiratory function.

I believe we now have to look again to procure organs from this larger group of dying persons. Such persons dying in such a way, in which most of us will die ourselves, is now being called the, “non-heartbeating cadaver donor”. Such dying persons are no longer used in North America, though they have continued to be used in Europe as a source of organs to be procured after death in addition to those who have primary death of the brain.

You might ask why we have concentrated, during the last three decades, so much on that small number of deaths that meet the criteria for brain death. There are several reasons.

First, the brain-dead criteria are reliable and relatively simple to use.

Second, the organs are fully perfused, after primary death of the brain, up to the time of organ removal.

Third, organs such as the liver and the heart cannot regain function as well as the kidney if there has been a period of non-perfusion, as is the case when organs are removed after people have died with the traditional criteria.

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Fourth, there are fewer ethical dilemmas—and Dr. Yun would not agree with this—in relation to procurement from those who have died with primary death of the brain criteria.

These are potent reasons for preferring procurement from bodies after brain death. However, we are now faced with the fact that organs from such dead persons are not meeting the needs of those on waiting lists. Therefore, in addition to greater efforts to procure organs from those who have died with brain death criteria, I believe we need to go back to considering obtaining organs from the much larger group of dying persons, cost what it may—and it will be costly—if we are to try to meet this criterion.

In some countries in Europe, over half the donors of various organs and tissues come from the non-heartbeating cadaver donor group.

I want to stress this aspect in my presentation this morning, as I believe this aspect may not have been stressed by other witnesses to the committee. It is an area that is not free from controversy, but then, no area of transplantation is.

I now want to move to voicing my support for other measures that will increase the availability of organs from that 85% of the general public—and I agree with Dr. Spital—who allegedly are in favour of organ donation for transplantation should they suffer from primary brain death, which is usually primary trauma to the brain or severe and sudden intercerebral hemorrhage.

This is a source of viable organs of such value that I believe we should not be content until we can say that ethically obtained, viable organs that could be used for transplantation are not being buried in the ground in Canada.

The federal government could help the situation by: one, legislating mandated choice, which has been very beautifully described; two, promoting organ donor choice as part of advance directives or living wills; three, establishing a national waiting list in electronic real time for those in immediate need of transplants; and four, enabling a national organ procurement organization, working with the provinces with federally supported, full-time positions in major institutions.

Something like a new, centrally administered procurement agency is what is claimed to have made all the difference in Spain. I could point to this diagram here, showing the figures from 1990-96. The white column is the rate of donors per million population in Spain. The darkest column is Ontario's rate and the intermediate colour is the rate for the whole of Canada.

You can see that the rate for Ontario and Canada runs at about 14 per million per year. The rate in Spain has risen to as high as 28 per million per year.

I would like to point out that this was due to reorganization of the procurement on a centralized basis, not the introduction of presumed consent, which they already had. I'm not dilating into the presumed consent issue, but many countries in Europe have presumed consent. Spain already had it, and had rates of 15 to 17 prior to this central reorganization.

I would recommend creating a Canadian standard for procurement processes, possibly using the CSA, similar to the recently developed CSA standards for safety, for all transplanted organs and tissues.

I would favour enabling a national organ-sharing program between provinces. At the moment, although the liver transplant surgeons do a certain amount of interprovincial sharing, this virtually does not occur elsewhere.

Lastly, I would recommend funding a federal task force or national forum similar to that which took place in December 1997 on the xenotransplant question, which we're not considering today.

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Such an initiative should consider the soundness of our reliance on brain death as the only basis for organ procurement, which it's largely become, and explore other options based on wider ethical concepts of participatory family decision-making and consent in end-of-life issues.

Thank you very much for hearing me.

The Chair: Thank you, Dr. Dossetor.

What we'll do now is turn to questions from colleagues on both sides, leading off with Dr. Martin.

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

Thank you all very much for coming today to guide us through our deliberations.

My first question is for Rabbi Bulka.

Rabbi Bulka, you've done an incredible job pushing this issue amongst the public, and I wonder if you could reiterate for this committee something that you and your colleagues with other religious beliefs, from other religious groups, did when you went together and signed donor cards.

Could you please tell this committee what the response was for these different religious leaders on the issue of organ transplantation?

As well, Dr. Spital, you're an active transplant surgeon right now, are you?

Dr. Aaron Spital: I'm not a transplant surgeon. I'm a nephrologist.

Mr. Keith Martin: Okay. Sorry. Perhaps you or Dr. Dossetor could explain to this committee what it would be like to harvest an organ after the so-called life support system was turned off, whether those organs would be viable or not, and whether in transplant surgery you would have a much greater chance of having a viable organ transplanted if that organ was removed from somebody on cardiopulmonary support as opposed to turning the cardiopulmonary support off, letting that person so-called die, and then having to engage in the extraction of that organ and the transplant of that organ.

Perhaps you could tell the committee about the viability of that organ being transplanted into somebody who simply does not have an option in terms of receiving that organ, who needs it to live.

Those are the two questions I have.

Rabbi Reuven Bulka: We decided it was not enough for religions to endorse the idea of organ donation. It would be more appropriate if the people who were the leaders within their faith communities would actually come and sign donor cards. This would be a signal to their communities that it's not only okay but it's the right thing to do. It's more than just preaching; it's actually doing.

So we had leaders of the major faith communities coming. They all said they would not mind getting the organs from any of the other faiths. The Anglicans said, “I don't mind taking a Roman Catholic kidney if that's going to save me.”

Voices: Oh, oh.

Rabbi Reuven Bulka: So we had a very good experience there. Apparently, the Kidney Foundation says requests for organ donor cards went up fourfold in the short period afterwards.

Obviously, this is the type of thing where you can't sustain the momentum of it. Nevertheless, we have continually talked about it. We have a video of the event. We had a press conference at the time. As far as I know, none of them have lost their jobs because they did this.

We also, by the way, had a giant organ donation signing card here in Parliament, I think last year. We had many parliamentarians sign this giant organ donor card, which actually hangs in the Kidney Foundation's eastern Ontario branch.

All that I have heard about this has been good. It's been very educational for the community to know that there's almost an across-the-board agreement on it with the major religions. There really is no hang-up, although the issue brought up by Dr. Yun is a legitimate one in terms of making sure that the person donating is actually dead. This is a concern that all religions have, that it should not be that we hasten the death of someone in order to save somebody else's life.

Barring that, there's a general agreement about this, which I think is quite significant.

Mr. Keith Martin: Which religions were there, Rabbi Bulka?

Rabbi Reuven Bulka: From what I remember, we had representatives of nine religions. The Roman Catholic Archbishop was there. We had the representative of the Anglican. We had someone from the Hindu religion. I think we had someone from the Muslim religion, and the Jewish religion. I think we may have had Baha'i, although I'm not 100% sure.

So we had representatives from the major religions.

Mr. Keith Martin: Okay. Thanks.

Dr. Dossetor, would you like to answer the second question, or...?

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Dr. Aaron Spital: I don't think there is any doubt that the organs removed from an individual whose heart is still beating are of better quality, and in general will work better. As Dr. Dossetor told us, the kidneys are able to tolerate lack of blood flow longer than the other organs.

For me, though, the question is not so much that the organs are better quality and will work better from a cadaver where the heart is still beating but whether it is ethically justified to use.

With regard to Dr. Yun's concerns, if we were to remove organs simply because they worked better, without paying attention to the ethical concerns, from an ethical point of view I think that would be indefensible.

So for me, the issue is not that, yes, the organs are of better quality—from a heartbeating preparation, yes, there's no doubt about that—but whether we are ethically justified in removing the organs from a cadaver where the heart is still beating.

I disagree with Dr. Yun's assessment of the situation. I think an individual whose brain is dead is dead, so I think it is ethically acceptable to proceed. But for people who believe otherwise, as Dr. Yun does, it would not make any difference that the organs were of better quality from a heartbeating preparation.

The Chair: Madam Picard.

[Translation]

Ms. Pauline Picard (Drummond, BQ): I would like to welcome all our witnesses and say that their testimony was most interesting. However, since I am not a scientist myself, I'm wondering about a few things.

I found Dr. Yun's presentation rather disturbing, and I would like to ask Dr. Dossetor, who has a great deal of experience in bioethics and medicine, to explain the difference between brain death and death. It is clear from the CV we were given that he is a master in this field.

You said that in some countries organs were retrieved from cadavers, from bodies in which the heart was no longer beating. Here, we seem to rely much more on brain death. What is the difference between retrieving organs from bodies in which the heart is no longer beating and retrieving organs from individuals who have experienced brain death? Is it preferable to retrieve organs from an individual who has just experienced brain death?

[English]

Dr. John Dossetor: Thank you for the question.

One has to experience what brain death actually means before one can convince oneself that the individual is dead, though their heart is beating. This is a difficult concept to get across to people, and I understand Dr. Yun's point.

At the risk of being a little macabre, I will describe a case, reported in the British Medical Journal, of a young woman who had a severe cerebral hemorrhage while pregnant. She became brain-dead, brain-dead by the fact that her brain had no electrical activity. She was kept alive, if you want to call it that, though I personally call it “body on life support”—or rather, “organ support”—for a matter of 10 weeks, I think, before she was delivered of a live infant.

There have been a number of such cases. It was not possible to maintain the respiration and cardiac vasomotor tone and other aspects after delivery, and she went to a delayed autopsy, delayed by 10 weeks.

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The reason for using that type of language is that when the autopsy was carried out, and the skull was opened, there was nothing but water inside. The pathologist describes how he was able to look down into the upper part of the spinal canal, because there was nothing there.

It is possible for a brain to not only die but also undergo what's called “liquidive necrosis”—that is, it becomes water—and yet maintain the rest of that preparation in a state of physiological function. I'm trying not to use the word “live”, because the body is not alive.

These are very difficult concepts. I've taken an extreme example, which I hope doesn't sound too shocking, but I think it is a fact that there are reliable ways.

One can also inject dye into the artery in people with a very great rise in intercranial pressure. Because the brain is in a very tight box, once it starts to swell it cuts off its own blood supply. One can show quite easily, in brain-dead individuals, that there is nothing getting to the brain—no blood. So the blood is just not circulating into the brain, although it's circulating everywhere else.

It's on this type of evidence that people are convinced that the brain is dead. Now, whether the brain is dead means that the person is dead, as I believe, is a matter of some degree of philosophical and religious judgment. I'm glad Rabbi Bulka has been so strong in pointing out that all the major religions believe one can reliably diagnose that a brain is dead, and when that is the case that the individual has already died.

The Chair: Thank you.

Dr. Yun, you wanted to make a comment.

Dr. John Yun: I think that kind of example is precisely the kind of example we would use to argue that brain-dead is not necessarily dead.

Let's raise hands, shall we, on who believes that someone who can carry a baby for x number of months is dead?

I mean, it's a very difficult concept for me to accept that brain-dead is dead, as you described. I understand this is the philosophical point.

I think part of the reason we believe brain-dead is dead is that in western culture, we value our intellectual capacity. We appreciate more the people who have higher thought capacity, with higher-capacity brain function.

I don't think someone is dead just if that crucial organ is no longer functioning at all. This kind of comment will be brought out further by Dr. Michael Brear and Dr. Ruth Oliver, who have a lot more experience in researching that area.

The Chair: I know you'd like to engage each other in debate, and we would enjoy listening, but all of you, in your presentations, have elicited some questions, or at least some interest for questions, from our colleagues, and I'd to go to the colleagues instead, with your permission.

Madam Minna.

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

I hate to do this, but I'd like to go back to Dr. Yun, and maybe some of the others.

In your presentation, you said that “often” when we withdraw life support machines and IV, death follows, but you don't say “always”, which is interesting. Are you suggesting that death, as you call real death of the body, does not always ensue? What does that mean in terms of having diagnosed brain death, and what is the criteria of brain death? I know I heard it means there is no electrical activity. I guess you're relying on what, sophisticated...?

Dr. Dossetor gave us an extreme example, but I know they're not always in that range.

Dr. John Yun: It's very interesting. I work in a small, peripheral hospital as an oncologist. Twice per month I do an ICU call. I was called to pronounce someone brain dead. I thought it was fascinating. When I went looked at the criteria, they do not include no electrical activity.

What you have to do is turn off the ventilator, the life-support machine for the lung, and see how long it takes for the person to take a breath. You wait ten minutes, and if there is no breath taken, this is one stage. It is called apnea test.

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The next stage you go through is brain-stem testing. For instance, with a little bit of cotton you see if their eyes blink, and you put a little cold water in their ear to see if their eyes move. Then you apply painful stimuli at the sternum, for instance, to see if the body moves.

So they have a protocol or set-up to go through each step, to see if there is any evidence of brain-stem reflex or spontaneous respiration. Those are the tests you go through.

The Chair: Before I go to Dr. Spital—

Ms. Maria Minna: I had one other question, but go ahead.

The Chair: Just a second.

I just want to remind all colleagues that in the next panel, we have someone who is making a specific presentation on all the protocols associated with brain death. That doesn't mean you can't ask questions of the witnesses before us. I just wanted to give you an indication that we have brought someone specifically for that.

Dr. Spital.

Dr. Aaron Spital: I would just like to make the comment that to my understanding, although I do not pronounce brain death routinely, the criteria for the pronouncement of brain death are extremely reliable. They do involve more than what Dr. Yun just outlined here.

For example, some of those things that were outlined can happen in comatose people who have potential for complete recovery. There needs to be more than that. In brain death there is no circulation to the brain. There is no blood flow to the brain. There is no electrical activity. There also has to be the absence of reversible factors, such as drug intoxications and hypothermia.

It is my understanding that the criteria are much more stringent than what was just outlined here. It should be stated that all of those persons declared brain-dead by somebody who really knows the criteria will, when life support is withdrawn, have cessation of cardiac and pulmonary function very quickly. They are dependent on life support, absolutely dependent on it.

The Chair: Rabbi Bulka.

Rabbi Reuven Bulka: I would like to add to this. This issue, the question of whether brain death is an acceptable criteria, has been a subject of intense debate in Jewish medical ethics areas.

In the original Talmudic sources about it, the criteria for death was basically cessation of breathing. The general conclusion that has been reached, and the consensus more or less accepted by the majority, is that cessation of brain activity, measured in the ways Dr. Spital has outlined, is effectively the equivalent of decapitation. That's the metaphor used. Basically, if the head and the body are not interacting, it's as if the head has been cut off from the rest of the body. It's just that you don't see it. It's effectively the same thing.

The general presumption is that if a person is decapitated, they are dead, and this would be a case of decapitation without the head being decapitated.

The Chair: Thank you.

Mr. Elley.

Mr. Reed Elley (Nanaimo—Cowichan, Ref.): We're certainly right into it this morning. It's fascinating.

Dr. Yun, you've injected something into our discussions that we perhaps haven't had before. I think it brings up a rather serious problem that perhaps we haven't, as legislators, in many areas, not just in the area of organ transplant...in terms of sometimes the moral dilemmas we face in creating public policy that ends up in legislation.

I have great respect, for instance, for the example you cited about Buddhists and their particular belief about the exit of the spirit after death. However, there would be major disagreement amongst the world religions, perhaps, on that one point.

For instance, the Christian viewpoint is that once death comes, the spirit immediately leaves the body. So there would be some differences that would perhaps, in the formulation of public policy on an issue like this, boil down to some problems in the moral dilemmas we face.

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I guess the question I'm trying to get at here is, how do we, as legislators, taking into consideration the differences, perhaps, between religions on some of these basic points, then reconcile those with the formulation of public policy? Can any of you give us any direction on how we could go about that, and whether it becomes a serious issue in terms of such a thing as mandated choice?

Do you understand what I'm getting at?

The Chair: That's a pretty broad question, Mr. Elley. I'm going to give each of our witnesses an opportunity to take a stab at it.

Dr. Dossetor.

Dr. John Dossetor: I'm not sure anybody can fully answer the question of how one makes policy when different religious views do not coincide. I would say, though, that within the context of the mandated choice proposal, there should be three possible answers to the question: one, yes, I am prepared to have my organs used if I should die a brain death, because that's implicit at the moment; two, no; and three, I'm not prepared to answer the question. People have the option to just remain mute.

I think that's relevant to the differences that exist in the population on such a difficult matter.

The Chair: Dr. Yun.

Dr. John Yun: How to approach it? With great caution. I guess that's what your job is.

I cannot make a specific comment. I'm just here to raise the possibility of caution in mandating anything, because the concept of mandated choice in itself is a very difficult option.

The only reason we think about mandated choice is that there is a lack of organs, so be careful with your intentions.

Much of the data is presented—you have seen the graphs—with organ donation in mind, self-interest, in a way. And that's not in a negative way; everybody who is involved with this has great compassion and the noble ideal of saving lives, but I think we have to look at it very carefully in terms of the life of a donor.

In terms of different religions, Dr. Brear, who will follow, will explain more in that area.

The Chair: Dr. Spital.

Dr. Aaron Spital: I hesitate to disagree with Dr. Dossetor at all, because I certainly respect his wealth of experience. I disagree slightly, though, in that I do not think people should be given the option that they'd like to leave the decision for another time. I think that would greatly dilute the value of the program. Many people, I fear—and there is some experience similar to this in Virginia—when given that option, choose that one, to delay the decision. So I'm afraid that way, we'd wind up in the same situation we are in right now.

One way to protect people who are afraid to say yes or no is to give families veto power. But I think it's very important that people think about this, and if we give them that option, many of them are going to take the easy way out.

I'd like to also disagree with Dr. Yun, again, on the concept that the only reason for mandated choice, the only reason we talk about it, is that we need more organs. There's another very valuable role that mandated choice would serve—that is, more than any other system for obtaining consent, it would ensure that an individual's wishes would be honoured.

So it protects autonomy more than any other system. We don't know whether we would get more organs or not. Maybe it would work, maybe it wouldn't, but it would make sure that a person's wishes would be honoured, whatever they may be.

The Chair: Rabbi Bulka.

Rabbi Reuven Bulka: I think the question you raised forces us to focus on what we're actually doing. We're not forcing people to agree to donate their organs, we're forcing them to choose what they want to do. They have the option of saying no, and I think this has to be respected.

I and everybody here, I think, would be against legislation that said everybody's organs are open season, and that if they die, the government takes them over.

There are countries that have these, by the way. Muslim countries have this type of legislation. We would be against that.

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I think by saying to the population at large that you have to make a choice, but you have a yes or no choice, we're not forcing them to say yes. We may be encouraging them to say yes, but they still have the right to say no. If their religion tells them they cannot say yes, so be it. We still have a large pool within Canada where the religion says not only yes but as well it's a terrific thing to do.

So I don't really think we're stepping on anybody's toes. We would if we were twisting them into doing something they didn't want to do. As far as I can see, we're not doing that. We're far away from that.

The Chair: Thank you, Rabbi Bulka.

Madam Ur.

Mrs. Rose-Marie Ur (Lambton—Kent—Middlesex, Lib.): Thank you, Mr. Chair. This is a most interesting morning.

Dr. Yun, I also will pick on you a little bit this morning. You certainly brought a new tone to our discussions.

Could you explain to us what brought about this profound change in your attitude toward organ transplantation? Secondly, since you're extolling other ways of transplantation, you must be a strong supporter of xenotransplantation, then, are you?

Dr. John Yun: My experience is very simple. I took for granted lots of assumptions that the brain-dead are dead. I actually have in my pocket a driver's licence that says I'm an organ donor. The whole problem happened last summer, when I talked to a friend of mine, and he brought up a philosophical point about how the soul leaves the body, which is the Christian definition.

I often get requests from Buddhists, etc., to not even touch the body, to leave it alone. They believe the soul is still left in the body until all apparent signs are gone.

That kind of attitude brought up the philosophical point of view of when death ensues. That's the whole fundamental problem I personally have.

Last week I was called to pronounce brain death. It did not require an angiogram to make that diagnosis. It did not require an EEG. It did require a clinical process for checking the brain stem. I went through that, and found myself in a bit of a dilemma as to whether I should declare the person brain-dead. What I actually did showed that all evidence of brain-stem reflex was absent. It met the criteria for brain-dead, but was the person dead?

That's the theme that keeps coming back for me. If the person is alive, I think the question takes on a totally different tone.

So my change of thought is very simple in terms of the idea of when this person dies. Does a person die more than once, brain death and then later a real death? Is the seat of the soul in the brain?

It's that kind of question that my change in perception came from.

Mrs. Rose-Marie Ur: So it's not so much medical as the other issues.

Dr. John Yun: Actually, it's a little bit medical. I do look after cancer patients, and sometimes when you walk into a room, you can be startled to realize that a person who may seem to have died is still alive. Only when you go very close can you see that they may be sick and hardly breathing, but they're still alive. I have to keep reminding myself that this person is alive, and deserving of 100% of my care. Because sometimes there might be a temptation to say, “This person is almost dead, so I'm just going to neglect them.”

So that's part of my personal experience, looking after dying patients. Is the brain-dead person a dying patient rather than a dead person? This is my personal clinical experience.

Mrs. Rose-Marie Ur: I don't think that happens, though, really, what you just said—and maybe I've misinterpreted—that if a person appears to be near death, we'll just leave them, let them die. Being a nurse in my previous life, that's not the way I handled my patients. I was there until the last minute. It was not, just because they were going to die, so be it.

Dr. John Yun: I'm glad you're that way, and I try to be that way too.

It's very interesting what someone once told me. Let's say there are two emaciated persons, very weak and almost dead. One person is a beggar, found on the street, and the other one is a millionaire. When you walk in, I was asked, at which one would you first glance? Immediately I felt a little guilty; the first glance would probably go to the millionaire.

Why do I say that? We all have pure intentions, but when it comes to practice, the assumptions we have, the biases we have, will affect the purity of our intentions.

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I'm not going to admit that if someone is all shrivelled up and dying I don't think of them as a person, but it is very tempting to just walk away and not give the 100% that is due a person.

Mrs. Rose-Marie Ur: And regarding xenotransplantation—

The Chair: Madam Wasylycia-Leis.

Mrs. Rose-Marie Ur: He didn't answer my question. Perhaps I'll ask him again later.

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

I'd like to pursue generally this whole area of mandated choice and the issue of overriding family opinion. It seems to me that this whole area has proven to be one of the most divisive issues before us, and an issue that has caused a lot of debate. There is a huge range of opinion on it.

My questions, then, are for all of you to answer, as time permits.

The Chair: Madam Wasylycia-Leis, you might want to focus on one, because I suspect you're going to get an answer from more than one, and then you won't have the time for all of them.

Ms. Judy Wasylycia-Leis: All right, then, I'll start with Dr. Spital. I'll pose these questions and perhaps time will permit others to answer.

What is the evidence to suggest that mandated choice would actually have an impact in terms of increasing numbers of donors in our society today? What is the evidence to show that moving toward overriding family consent would actually make a difference in terms of actual increase in donations? What legislative or regulatory mechanisms would be required to make this a reality? Which level of government should be doing it, federal or provincial, or can it be done through a joint, co-operative, federal-provincial mechanism?

Finally, many of those who have appeared before this committee have suggested that we as a society have not taken the elementary decisions and positions to increase the number of organ donors in this country. Before we even address the issue of mandated choice and overriding family consent, we haven't done the work as a society to educate the population about the importance of donating their organs. We haven't done the work with organ transplant centres in terms of providing teams of professionals to work with the community and the family. We haven't done everything possible within our current means to actually deal with this issue.

My question is, isn't it important for us to do some of those elementary steps first, to carry out some of the recommendations that have been made time and time again from other committees, from the federal-provincial committee dealing with this issue, before we look at mandated choice and overriding family consent?

The Chair: Dr. Spital, I know there's only one question there.

Dr. Aaron Spital: I could use a few hours for that.

I'd begin by saying that in the first place, mandated choice is not really a radical suggestion, I think, from the point of view of its impact on the family.

Robert Veatch, a well-known ethicist in Washington, D.C., has pointed out that the legal framework in Canada and in the United States for consent for cadaveric organ donation is an individualistic approach. It says that the wishes of the individual should be honoured, and that family consent was put in as a way to deal with situations where an individual had not made their wishes known, or had not declared them. So mandated choice, by emphasizing the individual, is simply emphasizing what the law already says is the way things should be.

Furthermore, public opinion polls agree with that. A Gallup poll we did in the United States indicates that people overwhelmingly think the individual rather than the family should be the one making the decision about what should happen with the individual's organs after death. So they fully support the intent of the Uniform Anatomical Gift Act in the United States and the Human Tissue Gift Act here in Ontario.

With regard to your question about what evidence there is that mandated choice would increase the supply of organs, as far as I know there is no evidence that it would do that. These are hypothetical suggestions based upon reasoning. Of course, you never know until you try it.

That's why I believe we need a pilot study. But I believe the reasons, the hypotheticals, are so strong, a pilot study is in order.

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I do not recommend that this should be something automatically implemented on a national, provincial, or state-wide level. I think we should see how it works locally and then decide whether or not it's something that should be implemented on a broader scale.

The Chair: Rabbi Bulka, you have a comment.

Rabbi Reuven Bulka: I'd like to address the issue of family override. This is a bothersome issue. I think we've been wrong on it. I think there's a moral problem here and there's also a religious problem, a very deep one.

For example, if a person makes a will, in other situations you say, look, this is what was said in my will and this is the way it has to be respected. Somehow or other, with regard to organs, it's become skewed, for whatever reason.

From a religious perspective, if a person says that after they go they want their organs to give life to someone else, what they're basically saying is that they want this as a merit for themselves. Whether it means they're going to get better entree into the world to come or whatever, to them it's absolutely vital.

The real question we have to ask is, how did we ever get to the point where we gave other people, no matter who, the right to destroy the desire of a person to save somebody else's life?

I mean, I could make a very strong argument that it is immoral, unethical, and sacrilegious to do that to anybody who really wants to save somebody else's life, to stand in the way and say, no, hold it, we're not going to let you do that.

So in regard to this question, I think we have been totally wrong on it. It's not so much a question of getting society gently into it; we have to really say there's no logical, moral, or religious basis for having had this position in the first place. We should be sliding into a different mindset on this very easily, because as Canadians, who I think understand the concept of democracy, endorsed by religious groupings, this is something we should naturally have had all the time.

On this question, then, which is a legitimate question, I think we have to really turn around and ask how we ever got into this mess in the first place. There really is no basis for it, and we should try to get out of it.

There's no doubt—and Dr. Spital gave evidence on this—that family override is a predominant issue in terms of organ procurement, and there's no justification for it.

Dr. Aaron Spital: Can I make one brief point about that also? Because I agree completely with Rabbi Bulka.

I'd also like to say that we're not facing a situation where suddenly now, if an individual who declared they would like to be a donor after death has a family coming in saying, “No, don't do it”, we're going to do it anyway. That's a very unlikely scenario. It may happen, but it would happen only rarely.

The vast majority of families, when their loved ones' wishes are known, want to make sure those wishes are honoured. So this is not about overriding family consent; this is about giving families information about what their loved ones wanted. It probably would provide comfort for most families, because now when they go into this decision process, they often have no idea what the person wanted.

The Chair: Thank you very much, Dr. Spital. I'm glad you raised that last point, because there is an element of the question of legalities, about what happens with organs and who—dare I use the word—“owns” them upon death.

Dr. Dossetor—and I don't mean to draw him into this discussion—in his brief pointed out the grey area of the legalities associated with death and the possession of organs.

Can I be so bold as to draw you in on that, Dr. Dossetor?

Dr. John Dossetor: I understand that the tradition in law is that there is no possession in a dead body. Nobody owns it. The family has the responsibility of disposing of the dead body. You can't leave your body to somebody in your will, because you do not own that. It's not part of your estate, as I understand, in law.

So there is a hiatus, actually, as to who owns the body. In a sense, nobody does. The example is that theoretically, if a transplant is taking place and an organ is about to be placed into somebody, and someone from another hospital says, yes, I'll take it, and then walks out with it, and steals it, the only thing in law that person has done is to trespass. You can't actually steal in that sense.

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So there's a very strange hiatus in the law, as I understand it.

The Chair: Thank you, Dr. Dossetor.

We have time for only two questioners. I'm going to go to Madam Redman.

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

Dr. Spital, I'd like to follow up on the previous question. You talked about asking the family at the worst possible time something they should never have been asked at all. I realize we've focused on whether or not to mandate organ choice.

A previous presenter, Dr. A. MacDonald from the Maritimes, talked about the fact that when we have teams trained in a sensitive manner, and they are necessarily not the physician who has dealt with the person in the hospital but somebody trained to deal with exactly this issue, we have a very low turndown rate. Actually, in Spain the refusal rate is as high as 40%. That has not been a problem in this country but rather the fact that we miss organs because we don't have those teams in place to ask the question.

I realize this is another level of dealing with this situation, but I'd just like you to comment on the effectiveness of having teams in hospitals to actually ask families if they're willing to be donors. Have you looked at that?

Dr. Aaron Spital: I haven't looked at having teams in hospitals. What is happening now in the United States is that there has been a new federal law mandating that all deaths or imminent deaths are referred to organ procurement organizations, and that the only people who will be permitted to request consent from families will be so-called designated requesters. These are individuals who have been trained and have experience in requesting consent for organ donation.

The thinking here, and the limited experience available, as you point out, is that they will do better, and that consent rates will be higher, when designated requesters, people with experience in requesting this, people who are not afraid to make these requests, are the ones doing the asking.

I support those efforts. I think those are valuable efforts. I do not think, though, this any way nullifies or negates the value of having mandated choice, because I think it would still be very helpful for families to know, at a minimum, what their loved one's wishes were.

As well, even if we could increase consent rates in that way, we need to ask the question of who really should be in the position to make this decision. When we ask ourselves that, most of us say we want to make that decision for ourselves. We don't want somebody else to make that decision for us.

If we feel that way—and that's what public opinion polls show—I think all of these questions are really questions we shouldn't really be deciding as individuals. We should be discussing these questions and then asking the people in society what they think. These are very value-laden issues. I think most people feel they want to make those decisions.

Again, even if we could increase rates—and I think we can through the mechanisms you described—we are still from an ethical point of view better off having individuals make these decisions for themselves.

Mrs. Karen Redman: Aside from the living will, what mechanism would you see? Aside from a driver's licence, as well, is there any other vehicle to use to achieve that choice for the individual?

Dr. Aaron Spital: Several have been suggested. One is the driver's licence. Of course, I would emphasize that I do not support people going to a motor vehicle bureau and being asked to decide that question there at the motor vehicle bureau. This is something people need to know long before they get there, that they're going to be asked and have to answer that question.

Some people have suggested asking the question on tax returns. My only concern with that is that people may not be feeling very generous at that time of the year.

Voices: Oh, oh.

Dr. Aaron Spital: There are countries that have national identification cards, which could be incorporated into that.

These are some of the mechanisms that have been suggested as places for making the declaration.

The Chair: Thank you.

I'm going to go to Mr. Vellacott.

Mr. Maurice Vellacott (Wanuskewin, Ref.): I have a quick question requiring a yes or no answer from each of the panel members.

First, should an anencephalic infant—in other words, a baby born without a brain but with other viable organs and tissues—be considered, and assumed as, a donor?

Dr. Bulka, and then down the road, yes or no. Do you think they should or shouldn't be?

Rabbi Reuven Bulka: It's a tricky question. I don't know whether I can give a yes or no answer.

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I think in a situation like this, you get into a dicey area in that you don't want the state to make these decisions. You have to have a mechanism whereby since this child can't make the choice.... My tendency would be to lean toward allowing the family to make the choice for the child in this situation. The alternative would be government getting into it, and that's a slippery slope.

Mr. Maurice Vellacott: Okay. They are brain-dead, though, in effect.

Dr. Aaron Spital: I agree with Rabbi Bulka.

Mr. Maurice Vellacott: You think it's a family issue?

Dr. Aaron Spital: I think it is something that families should be allowed to decide. The recognition of anencephaly can be made with a high degree of certainty. It's a very reliable diagnosis. I think the family should be able to make that decision.

Mr. Maurice Vellacott: Notwithstanding the fact that the person is brain-dead, no brainwaves or anything.

Dr. Yun.

Dr. John Yun: I strongly disagree with the previous two speakers. Many anencephalic babies do breathe spontaneously. They do swallow. They do react to stimuli. They are not brain-dead, as I have been taught, with entire brain-stem reflexes, etc.

I'm not trying to be personal—I'm sorry—but we already have assumed that an anencephalic baby, without a brain, is not a person. To me, that's wrong.

Either someone is living...and if someone is alive, because they have no brain they're not necessarily not a person. The seat of the soul, the Christian point of view, is not necessarily the brain. Be very careful about that. Someone is either alive or dead. If someone is alive, they and their family deserve the entire protection of the law.

So be very cautious about proceeding with the assumptions you make.

Mr. Maurice Vellacott: Right.

I have one more quick question to interject here, but perhaps you first could give me a response, Dr. Dossetor.

Dr. John Dossetor: Just to reframe the question, is that yes or no for being a donor?

Mr. Maurice Vellacott: Yes.

Dr. John Dossetor: No.

Mr. Maurice Vellacott: Or should it be assumed or considered that one is a donor?

Dr. John Dossetor: I think not.

Mr. Maurice Vellacott: Okay.

Quickly, perhaps you could rank for me, on the recipient end of it, an individual who would be the most bona fide, if you will, recipient of an organ transplant. I'll set it up this way. Let's assume they're all equal in terms of their general state of health and so on, but if the person is younger, would they rate a little higher on this organ donor recipient list?

Or let's say the individual was the primary wage earner in the family. Would that rate them higher on that list of recipients?

As well, let's say I was an individual who—

The Chair: If you don't stop there, you're not going to give them enough time to answer the question.

Mr. Maurice Vellacott: Okay. I'm just wanting them to come at it in a couple of different ways in terms of how they set up criteria.

The other would be if I had a smoking problem and—

The Chair: We're off in about 30 seconds, Mr. Vellacott, so if you want an answer, you have to stop.

Mr. Maurice Vellacott: Okay.

Rabbi Reuven Bulka: Quickly, I just want to go back to that first question and say that we were answering the question based on the presumption that there was no brain activity whatsoever on this baby that you were asking about. It was a totally—

Mr. Maurice Vellacott: Yes, but I'm actually moving on from that now.

Rabbi Reuven Bulka: I understand, but I wanted to make the answer clear on that one.

On this issue, this is something we can talk about for days on end. Coming from the tradition that we do, we base our assessment on the following criterion: We ask the doctor which person of the ones they have in front of them has the greater chance of survival.

So that's it. That's our criterion.

Mr. Maurice Vellacott: Okay.

Dr. Aaron Spital: I don't think age should be a criterion for allocation of resources. This is not something I've given a great deal of thought to, but my initial impression is that wage-earning should also not be a criterion. I think that's something that can change all the time.

I think people should compete equally. People are valuable in and of themselves, and I think they should compete equally for organs.

The Chair: Dr. Yun.

Dr. John Yun: I have no further comment on that.

The Chair: Dr. Dossetor.

Dr. John Dossetor: I think one should use the criterion of optimizing the human life outcome. This makes it very difficult, but certainly social worth, wealth, and age, per se, should be entirely out of the consideration. One optimizes the outcome.

The Chair: Thank you, Dr. Dossetor.

• 1035

I wanted to give all members an opportunity to get a question in. We've gone over our time, but I'm going to go to two last members.

I'm going to ask you to ask one question each. Please identify one person to whom you would like to ask that question, and then I'll jump immediately to the second one.

Mr. Myers.

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

We heard you talk, Dr. Spital, in terms of mandated choice. I think in answer to a previous question you laid out some options and mechanisms.

I want to ask you, Dr. Dossetor and Rabbi Bulka, if you have a preference in terms of how best to accomplish that. In other words, is there a recommendation for this committee as to how best to bring about mandated choice?

Dr. John Dossetor: I would use a national form, such as a tax form, and I would make it clear that this is dissociated from family override. I think that's a totally separate issue.

I would put it, as I said, in a threefold question, but mandated.

Rabbi Reuven Bulka: I would prefer seeing it in a census-type thing that was sent out. I agree with Dr. Spital that tax time is not the best time. I mean, I'm giving all my money to the government, and why should I give my organs too? That may be the mentality people have.

I would opt very strongly for a census-type situation. That would make the most sense for this type of thing. It would have to be preceded by a lot of education, though, because we're trying to change the mindset of people, and that doesn't come easy.

Mr. Lynn Myers: Thank you very much.

The Chair: Mr. Jackson.

Mr. Ovid L. Jackson (Bruce—Grey, Lib.): I have just one quick question, Mr. Chair.

I'd like to know what the outcome is for an anencephalic or brain-dead child. How long would they live?

The Chair: Do you want to direct that to anyone in particular?

Mr. Ovid Jackson: We'll get the answer from wherever we can. Whether they want to write it in or tell us, I think it's a good question.

Dr. John Dossetor: I think I can answer it.

They always die, usually after a matter of a few days, but they may, as Dr. Yun mentioned, breathe. So they have brain-stem function. Whether they have brain death or a failure of brain life is a philosophical point.

Dr. John Yun: Many of my cancer patients do die in a few days, too, but the fundamental question is not how long they live but whether they are a living person. I keep coming back to that fundamental question.

Mr. Ovid Jackson: For me, that's an educational point.

The Chair: I have one very brief question myself.

Dr. Dossetor, in your brief you talked about the fact that organ transplantation has become part of “standard medical care”. I think you used that term. Help me understand a little bit what you meant by that.

Is it something that's performed two or three times a week? Does it fit a set of criteria established by some body, or does it fit into some other category?

Dr. John Dossetor: I think what I meant was that when it moves out of the experimental, it becomes a standard form of treatment. It is the best treatment for chronic kidney failure and therefore is part of normal medical practice.

The Chair: Widely recognized as such? Is that what you mean?

Dr. John Dossetor: Yes. It's universally recognized in Canada as such.

The Chair: Okay.

Dr. John Dossetor: The failure to supply that is a problem.

The Chair: I understand.

As all of you can sense, there are a lot of other questions committee members would like to have asked. I'm going to assume the responsibility for having cut them off.

I thank you on their behalf and my own for sharing your wisdom and your expertise with us. Regrettably, we have only this much time, but we have others as well who are just as anxious to illuminate this subject for us.

Again, on behalf of everyone here, thank you very much, Dr. Dossetor, Dr. Yun, Dr. Spital, and Rabbi Bulka.

We'll recess for about two minutes while we bring the other members forward.

• 1039

• 1046

The Chair: Colleagues, we will continue our presentation on issues related to bioethics and ethics in general as associated with organ donations and transplantations.

We have in this panel, from the Medical Research Council of Canada, Dr. Francis Rolleston, director of ethics and international relations; someone who appears before us as an individual, Dr. Ruth Oliver, psychiatrist; from the University of Victoria, Dr. Eike-Henner Kluge, chair of the philosophy department; from the Ottawa Hospital, Dr. Robert Nelson, professor of medicine in neurology; and appearing as an individual, Dr. Michael Brear.

I noted that some of you were in the audience during the last panel, so you may be familiar with the process. We're going to ask you to make a presentation of about five minutes. I would ask you not to go beyond that. Then we'll go into questions from colleagues on both sides of the table.

Let's begin with Dr. Ruth Oliver.

Dr. Ruth Oliver (Individual Presentation): The most important thing I can offer you today is that if you can see me, hear me, and understand what I am saying, whether or not you believe what I say or agree with what I say, you need to know that I, 22 years ago this month, survived the criteria for clinical death—some might say brain death. Within a period of less than 24 hours, I was there at least two times, and had to be resuscitated three times.

Now, 22 years later, I'm living testimony that people survive so-called clinical death and brain death, and not just survive as vegetables—a derogatory term—but can become totally functional, totally contributing members of society.

I was a third-year psychiatric resident when this event took place. Eighteen months later, I wrote my fellowship, my specialty exam. Six months after that, I wrote my licensing exam, because as a foreign medical doctor, I needed to get a licence to practice as a doctor independently. So I jumped a few independent intellectual hoops after this event.

So remember, you've seen one and heard one. You know they can survive. That's the most important message.

• 1050

I'll give you a little bit of the clinical background here. This information was provided, but unfortunately has not yet been translated into French. I left another two English copies here, but it was not soon enough to have the translation done in time.

This took place down the road, at Kingston General Hospital. I was at Queen's, a third-year resident in psychiatry. I was 30 years old, and I was pregnant for the third time. My pregnancy was completely normal until the baby was at 35 weeks' gestation. I presented at emergency because I had heart palpitations.

I was admitted. By scan and X-ray, they discovered I had hydramnios, which is a great deal of fluid, and an anencephalic baby. Labour was induced on March 25. My stillborn, anencephalic son was born just after midnight, March 26.

Between 1 and 1.5 litres of blood were expelled with the placenta. I was therefore found to be very anemic. My first resuscitation involved giving me blood, because at 3 a.m. the following day, March 27, about 26 hours after the delivery, I was bleeding continuously. I deteriorated into a loss of consciousness and was comatose by 8 a.m., with a very stiff neck. Blood pressure was down to 70 systolic.

So that was my first resuscitation. I needed a lot of blood transfused.

At that point they didn't know why I was unconscious. Carotid angiograms were done. They found that the blood vessels were deviated, so they thought I had a hematoma, or a brain bleed, if you like.

A neurosurgeon was called in. They did a craniotomy and found there was nothing wrong with my brain. There had been no bleeding. There was no problem when he opened, but right after he opened, the brain began to swell rapidly and then bleed from every level they had made the incision through. It became uncontrollable.

At this point I went into a coma, and stopped breathing. They put me on a respirator. I had poor eye movement and no response to very deep pain, so I was returned to the ICU in critical condition, because I was continuing to ooze.

One hour after the surgery and right in the ICU, I developed the irreversible symptoms of dying—fixed, and dilated pupils, quadriplegia, and no response to pain. Fortunately for me, my neurosurgeon right there in the ICU opened the flap, put in a syringe, and pulled out a collection of blood. Immediately my pupils came down and started reacting again, and became equal. They then took me right back to the ICU, because they still had this problem of bleeding.

As they were trying to prepare me for the surgery, I went back into the situation of fixed, dilated pupils, quadriplegia, not responding to pain, and not breathing. That was the third resuscitation.

Again, I had bled a collection of 200 ccs of blood. When you have blood and you have brain swelling, the vital section of the brain that controls your pulse, your blood pressure, slips down into the spinal cord. That is called a tentorial herniation.

• 1055

As my neurosurgeon later told me, nobody had ever been known to survive a tentorial herniation. I survived it twice. He told me it wasn't in the literature. He'd never seen one, known one, or heard of one.

All of this is to point out that what can look extremely critical, and what seems to be failure at all levels...because 24 hours later, I was conscious. The following morning I was intelligent, I was aware, and I was responding to pain. Within 24 hours after that, they took out the respirator.

The rest is history. It was complicated—I was in hospital three and a half months—but I'm basically only covering the area in which I was called clinically dead. Some people may say because no EEG was done I was not brain-dead, but I have comments about that.

After I was conscious enough and aware enough to understand my situation, many people came to see the so-called miracle patient.

After discharge, when I was complaining in his office about a slight speech defect, which you may detect I still have, he just laughed at me because of what he had taken me through. That's the only thing I have left, a little bit of dysphasia, a little bit of a problem sometimes naming something. I know in my head what I want to say, but the word doesn't come out clearly.

I was also epileptic. I had gone into epilepsy for several days, right in that acute phase. The final chapter on that epilepsy was written on April 1 of this year. Many times over the years they tried to take me off the anti-epileptic drugs. Every time I would get a seizure, my EEG would become abnormal again.

On April 1, it was an act of faith. I unashamedly will tell you that I prayed about it, and when I was finished with my prescription at the end of March, I simply did not renew it. I simply did not take any more anti-epileptic drugs.

We are now looking at 10 months, and I haven't had a seizure, not even a slight twitch—nothing.

So I'm completely symptom-free except—and I say this with a little bit of humility—I have some problems naming things sometimes.

The Chair: Can I ask you to bring the presentation to a close?

Dr. Ruth Oliver: You know, in all the years it never occurred to me to ask for my medical records. Last Friday, by FedEx, I received my medical notes from Kingston General Hospital. It's a lot of pages, but they just cover the crisis time. They have in the record over 500 pages dealing with the whole admission, but this is only the nurses' and ward notes. The neurosurgeon at the time was not in the country. I don't exactly know where he is. So I don't have his personal notes, but everything he wrote in hospital is here. So you can verify some of what I say. I'm happy to share my notes with you.

The Chair: Thank you, Dr. Oliver.

Dr. Eike-Henner Kluge.

Dr. Eike-Henner Kluge (Chair, Department of Philosophy, University of Victoria): Thank you, Mr. Chairman.

I would like to thank this committee for the opportunity to appear before it. This is a subject dear to my heart.

My oral comments will fall into three parts—observations touching the current situation; remarks about certain proposals for changing retrieval laws; and recommendations for changing the situation. Since the time for oral presentation is too short to provide details, I refer the members of the committee to my written brief, all three parts of which were submitted and I believe will be available in translation.

I say “brief”, but one is a 140-page study I did on establishing a human tissue bank at the request of Health Canada, Health Protection Branch, in 1996. Together with supporting documentation, that may deal with some of the issues this committee is dealing with.

As to the current situation, I would suggest a major contributor to the current organ shortage is the transplant societies' refusal to act in accordance with the wishes when next of kin object.

• 1100

The societies maintain that if they acted on donor wishes and had followed current ethics and law, next of kin would be outraged, and this would lead to a drop in donations.

I refer to this in my brief as the so-called ghoul objection. This is the transplant societies' term. As I show in my brief, this reasoning is logically bizarre.

Furthermore, the problem is caused by the inappropriate retrieval protocols of the societies themselves that violate ethical and legal standards. According to the transplant societies' own data—I take these from MORE, Multiple Organ Retrieval and Exchange Program in Ontario, and PORT, Pacific Organ Retrieval for Transplantation program in B.C.—fully one-third to 35% of organs are lost when next of kin are asked despite the fact that there is a valid organ donor card.

So with respect to some of the information you heard from Dr. Spital, who said there are no data, in fact there are data to show that 35% of the organs in fact are lost when people are asked, despite a valid donor card.

That strikes me as unethical and uneconomical, and it kills patients on waiting lists. It should be changed by introducing national, enforceable standards that respect the ethics of informed consent. The reasoning behind this is more fully developed in my brief.

The transplant societies and others have suggested that the shortage could be ameliorated by changing the law. These suggestions include: encouraging donation through granting of preferred-recipient status to organ donors; offering financial inducements; legalization of presumed consent; routine harvesting; and introduction of required response, or what in the United States is called “mandated response”, to a legally stipulated request.

I have serious misgivings about these options, with the exception of required or mandated request. Again, they're outlined in my brief, to which I respectfully refer this committee.

In the first place, they violate fundamental ethical principles that are integral to decision-making within the Canadian health care context. It seems to me that if there's a way to ameliorate the current organ shortage without violating such fundamental principles, that would be a preferred option.

In the second place, given the current reluctance of transplant societies to implement the ethics and laws now, there is precious little reason to assume that they would follow any new laws. Even if these laws were based on proposals originating from the societies themselves, what is to prevent them from circumventing the laws by their protocols?

On a more positive note, I would make four recommendations. Again, these are fleshed out both in my 15-page brief and in my 140-page study on setting up a human tissue bank, which, as I said, was commissioned by Health Canada, Health Protection Branch.

My recommendations are: one, that a national organ retrieval service, similar to the Canadian Blood Services, be set up; two, that laws or regulations be passed to establish required response; three, that a computerized national organ donor registry be established and linked to the national organ service; and four—something different—that government institute a research program dealing with activation of appropriate genetic and cellular mechanisms to allow the selective growth of organ systems.

That is, in fact, within the realm of the possible, as some research indicates at the present time. This would not merely solve the organ shortage once and for all but it would also place Canada globally in a lead position in the biological sciences, something not to be sneered at.

There's no need to impress on this committee that the current organ shortage is unacceptable for human, as well as medical and financial, reasons. We are dealing with preventable deaths, which has ramifications far beyond the immediate sphere of the donor and prospective recipient, because it affects the availability of health in general, and the finances of this are of course familiar to this committee.

However, as Rabbi Bulka asked before, how did we get into this situation that we have a 35% gap? The answer I would like to emphasize is that part of the reason for the shortage lies in what strikes me as a fundamental violation of the ethics of informed consent in the protocols used by the current transplant societies. Their protocols send a message that organ donation really doesn't mean anything; it's the wishes of others that really count.

• 1105

It is surprising to me, under the circumstances, as I pointed out in an article in the Canadian Medical Association Journal two years ago, that anyone bothers to donate at all if they know their wishes may be overridden.

I would therefore urge this committee not to view the problem merely as one of balancing practical and moral concerns. A mere balancing would in fact be a de facto betrayal of a moral right. A principled approach, such as the one I suggested in my brief, offers at least as good a chance of ameliorating the shortage as changing the law.

Such approach would also have the support of Canadians. Again, there are data from the transplant societies themselves. Canadians want their wishes to be followed, in this, their final and most meritorious act.

Thank you very much.

The Chair: Thank you, Dr. Kluge.

We'll now go to Dr. Nelson.

Dr. Robert F. Nelson (Professor of Medicine, Neurology, Ottawa Hospital): Thank you, Mr. Chairman.

My presentation will be focused primarily on the biology and the actual pronouncement of brain death.

Brain death is defined as the irreversible loss of the capacity for consciousness combined with the loss of all brain-stem functions, including the capacity to breathe. It is said to occur when there is no evidence of function of the cerebral hemispheres of the brain stem.

Traditionally a person was considered dead when they stopped breathing and there was no evidence of heart action. About 40 years ago mechanical respirators were developed, which could be used when breathing stopped. As these became more efficient, the patient could be maintained on a respirator for an indefinite period of time. Patients did not need to die when their breathing stopped.

More recently, cardiac resuscitation became possible when the heart stopped. Nowadays, resuscitation after cardiac arrest is commonplace, although long-term survival and return to a useful life is unusual.

It becomes apparent, then, that mere cessation of heart action or breathing does not invariably signal death.

In 1968 a committee met at Harvard and proposed that death could be considered when the brain stopped functioning, and that brain death was equivalent to death of the individual.

Subsequent committees in various jurisdictions all over the world have established specific operational criteria by which a diagnosis of brain death could be determined.

In 1987 a group of Canadian neurologists, neurosurgeons and neurophysiologists proposed a set of criteria, adopted by the Canadian Medical Association, that for the past decade have been used throughout this country. In the past month, a special committee of neurologists has published an updated version of the operative criteria.

I will not go into the ethical philosophical matters of personhood and what constitutes the essence of an individual. Rather, I wish to focus on biological facts and explain how the average physician goes about trying to determine brain death.

First I will speak to the biological basis of brain death. Simply put, the brain consists of two hemispheres, considered the thinking or cognitive parts of the brain. The brain stem is the part that connects the two hemispheres with the spinal cord through which nerve messages course to the peripheral nerves, which control body and limb movements and through which information is brought back to the brain from peripheral sense organs.

The brain stem also contains vital centres that control breathing, heart rate, blood pressure, temperature, and other functions necessary for the maintenance of life. If the hemispheres are destroyed, thought itself has no home. If the brain stem centres are damaged, some or all functions necessary for life are lost, although a few, such as breathing, may be artificially sustained.

Various clinical conditions may result from localized brain damage. Consciousness may be lost when either a large portion of both hemispheres is damaged or the upper part of the brain stem, which contains pathways for arousal, is destroyed.

The person is then said to be in a coma. This may be reversible, as when the cerebral cortex is suppressed temporarily by an anaesthetic, or may be permanent, as when a massive brain hemorrhage has destroyed much of the hemispheres.

When the hemispheres have been destroyed slowly by disease, such as Alzheimer's disease, the brain stem may be preserved but the patient is said to be in a persistent vegetative state. Their thought processes are greatly interfered with, but they can still breathe and function.

When the hemispheres are preserved but the brain stem has been damaged, as by a stroke, the messages from the brain cannot reach the spinal cord and the patient cannot move their limbs. They are said to be in a locked-in state. The brain is locked into a body over which is has no control.

All of these conditions much be distinguished from brain death.

• 1110

I was going to outline how we go about determining brain death, but I think I will skip much of this. It's in a handout I've prepared.

Generally, brain death can be determined by a simple examination. When we developed our criteria about a decade ago, we made sure this could be an examination that could be carried out in the downtown Toronto university hospitals or in the northern territories with equal ease. In other words, we did not depend on technology to be able to determine brain death.

As has been mentioned by several speakers this morning, it depends on examination of brain-stem reflexes, and looking for evidence that there is still some functioning of the cerebral cortex.

I'll not go into any more details on that. However, there are certain caveats people may overlook that are important to consider.

The patient's temperature, when they lost consciousness, must have to have been at least at normal levels. A person found in a snowbank, for example, may be in a state of hibernation and not really dead. They may in fact recover consciousness when warmed up.

A patient who has taken an overdose of drugs may appear dead and yet survive.

In these and in other circumstances we may use special tests, such as an electroencephalogram to detect brain electrical activity. There are other tests we carry to determine whether there is brain blood flow. If the blood flow is lost to the brain because of increased intracranial pressure so that no blood can get into the brain, the brain obviously cannot survive for very long. We're talking matters of minutes here.

The context in which the diagnosis of brain death is made is most important. In almost all cases, death is anticipated. The patient may have sustained a severe head injury, their condition deteriorating over several days. They may have suffered a massive hemorrhaging of the brain or into the spaces surrounding the brain, causing an increasing pressure, which prevents blood from getting to the brain tissue.

Most people who die in hospital die when their heart stops. Only a few die from brain death.

I'd like to suggest some safeguards to make sure that we are not prematurely declaring a person brain-dead. I have six of these.

One, there should be a reason for considering brain death to begin with. The situation should be one in which there is reason to suspect that severe brain damage or dysfunction has occurred and that death is imminent.

The examining physician must be familiar with the standards and guidelines set down by the CMA. In most hospitals, the physician will be an intensive care specialist, a neurologist, or a neurosurgeon.

The physician must have no stake in the patient's demise. That is, the physician pronouncing a patient brain-dead must not be the treating physician for a potential organ recipient.

Whenever possible, a second physician should carry out another examination, completely independent of the first physician. In many cases there may be some initial doubt as to whether the criteria are met, and another examination should be carried out after a number of hours, or perhaps even a day, has passed. A decision must never be made hastily just to obtain organs for donation.

Brain death must never be declared until all the criteria are met. Indeed, by this time, the patient will usually be hypotensive, with falling body temperature and reduced output of urine.

Finally, brain death is not a matter to be agreed upon by consultation with family members or others, but the family should be kept informed of the patient's status. The family, however, has every right to decide the implications of the diagnosis of brain death. There may be a lot of arguments about what right they have in determining whether or not the organs are to be donated.

Certain religious and ethnic groups have taken a stand against the concept of brain death, and physicians making brain death pronouncements must always be cognizant of and sensitive to the beliefs of the patients and their families.

Thank you.

The Chair: Thank you, Dr. Nelson.

Now I'll go to Dr. Rolleston, please.

Dr. Francis S. Rolleston (Director, Ethics and International Relations, Medical Research Council of Canada): Thank you, Mr. Chairman, and honourable members.

I'd like to thank you for inviting me to participate in today's hearing. I'm here as the staff person responsible to the Medical Research Council for managing the council's ethics issues.

I understand I was invited here to talk about Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. I believe you have copies of it on the side table.

The policy statement is, I believe, of MRC's numerous policy statements in ethics issues, the most relevant to the present work. In my view, the essential point is that this policy statement seeks to set out the means of ensuring that research meets high standards of ethics. Any new technique, including transplantation, requires research before it can become part of established health care. Such research must involve humans as subjects.

• 1115

The policy statement replaces policies of the councils that have been place for at least 20 years. The fundamental principle that is accepted by many countries is that before it is started, any research project involving humans must be approved by a properly constituted research ethics board. This has been the case for research funded by the council since the late 1970s.

The present policy statement has evolved from previous ones. It provides greater precision on procedures and principles for ethics review than did previous documents, and we believe it is in line with or exceeds policies in other advanced countries.

However, policies are merely words on paper unless they are implemented. Two issues arise with respect to the implementation of this policy statement—its authority and the assurance that it is actually being effectively implemented.

Though this policy is the only national Canadian policy statement, the research funding councils have authority only over the funds they are provided by the Government of Canada. These research funds are expended completely in universities and affiliated teaching hospitals and research institutes, which together carry out at least 60% of health research in Canada.

If—and I emphasize the word “if”—the councils implement the policy effectively, we will be able to assure Canadians that the research supported by the councils meets the standards set out in the policy statement.

Further, because research institutions will probably not want to work with a double standard, we may have some confidence that all research in the university sector, funded from any source, meets the same high standards. This will include all the research sponsored by industry within the academic sector.

However, there is as yet no means of providing assurance that research performed outside institutions receiving funds from the councils meets acceptable standards. Formal adoption by government of this policy statement, or of a comparable one for all research that government performs, funds, or uses in its regulatory functions, would be a significant step forward.

In this regard, the committee may wish to note the leadership that has been shown by the College of Physicians and Surgeons of Alberta, which requires ethics review by their research ethics board of all research carried out by physicians in Alberta who are not subject to review by one of the university or teaching hospital research ethics boards.

The second and central issue is the effectiveness of the implementation of the policy statement. On the basis of visits in the last few months to each university with a medical school, I am confident of the very high standard of dedication by all involved in the research ethics review processes in Canada's academic health research community.

A national workshop that we organized three weeks ago confirmed this view. It brought together approximately 100 people nominated by academic and industrial organizations to discuss steps to increase the effectiveness of the work of research ethics boards.

This meeting also showed a very strong commitment to working together across the country and between sectors, particularly between academe and industry, to the goal of the highest standards of ethics and research. The Medical Research Council is now working hard to build on this foundation.

Thank you.

The Chair: Thank you, Dr. Rolleston.

Dr. Brear.

Dr. Michael Brear (Individual Presentation): Thank you. Bonjour, mesdames et messieurs.

I'm a general practitioner, and much of what I do is to protect my patients from the enthusiasms and fashions of specialists.

The first important fact that I wish to establish to you, as legislators, is that the so-called brain-dead criteria used in Canada do not comply with the legal definition of death. Brain-dead criteria do not comply with the legal definition of death.

The so-called beating-heart cadavers used as donors are in fact living patients. They are sick, they are dying, but they are living and not dead. Dying is not dead. No matter how rapid the process and how irreversible the process, they are dying, sick people.

• 1120

There exists those means that shall support their lives. These means are artificial. Their life is real life. These artificial means can only assist a body that is a living body. If the body lives, we live.

The second important fact that I wish you to consider is that we're talking about two patients—one with a sick heart and one with a sick brain. We have the means to help one but not the other. What will be the criteria for death when we have treatment for both?

In the living, the heart, the brain, and the lungs work in unison. Their activity in the living is inseparable. The three separate systems of the lungs, heart and brain are in fact codependent. Death of one system is rapidly followed by death of the other systems. Death involves disintegration, disillusion, and destruction, and I believe a true definition of death should include those codependent three systems—total non-function and the condition of destruction and disintegration.

Please turn to pages two and three of the presentation. There you will see my scientific objection to organ retrieval based on brain-dead criteria. These are scientific objections.

One, brain death can only be diagnosed at autopsy. In the biggest study by the National Institute of Health in the U.S.A., as long ago as 1980, known to the medical profession for nearly 20 years, it was impossible to verify that a diagnosis made prior to cardiac arrest in one who is brain-dead by any set of criteria would invariably correlate with a diffusely destroyed brain.

How can a condition only determined after death be a requirement for declaring death? Surely this must be the focus of your concentration today.

At least seven cases are reported of brain-dead women giving birth to healthy babies. These indicate the presence of persisting pituitary, persisting spinal, and persisting total bodily function. They illustrate the amazing growth and development of the human fetus from early pregnancy in brain-dead women.

Twenty percent of brain-dead people have active cortical activity, as demonstrated on electroencephalogram. Brain-dead people have awakened on electrical stimulation. Some spectacular experiments have been done by Dr. Hassler, reviewed in International Journal of Neurology, as long ago as 1977.

You may ask, why have they not been repeated? I don't know.

Brain-dead people require general anaesthetic to prevent reaction to pain. The reactions include moving the limbs and trunk. The Lazarus syndrome involves sitting up and crossing the arms over the chest. This reaction to pain also causes marked increases in blood pressure and heart rate, which settle only on giving general anaesthetic.

Brain-dead people demonstrate oesophageal activity, which is centred in the brain stem. Brain-dead people survive without replacement of arginino-vasopressin, an essential-to-life hormone produced only in the brain stem.

Brain tissue can take over the function of absent or destroyed brain tissue. Cerebral-type activity can occur outside the cerebrum.

In small children, the remaining non-dominant hemisphere takes over the function of the dominant hemisphere that has been removed for cancer. An adult will partly recover the loss of the non-dominant hemisphere.

The survival of three children born with anencephaly—that is, without cerebral hemispheres—demonstrates cerebral activity occurring in tissue other than cerebrums, which must be therefore in the brain stem or elsewhere.

• 1125

Total recovery from a diagnosis of brain death has been reported. A women contacted me three years ago, describing her experience of suffering the locked-in syndrome. Apparently her family were told she was brain-dead.

This interior consciousness cannot be measured at all. If we cannot measure it, surely you must assume it present in all cases of unconsciousness and coma. In turn, we record the pubertal change and production of procreative cells. This case is the first case of a patient transferred, brain-dead, from an intensive care unit to a long-term home.

It raises the possibility, with modern techniques, of a brain-dead male fertilizing a brain-dead female and fathering a child.

Qualification for a brain-dead donor in Canada demands a normal temperature, which is only maintained by an active brain stem. Thus, a diagnosis of brain-dead demands that a brain be alive. Brain-dead people display normal features in developing fevers and bed sores, shivering, and in responding to antibiotics and IV therapy, etc.

In view of the sheer weight of this scientific evidence, many doctors are rationalizing...in their writings and in conversations. I'll give you an example of a number of them.

I refer you to example 12. I asked a young doctor involved in brain retrieval, organ retrieval, whether what he was doing was right or wrong. His answer was, “Wrong.” This illustrates the impossible heavy burden on doctors.

Last week, at about 2.30 a.m., a young doctor who was asked to verify brain death, faced with hospital protocols, phoned me for my advice. He knows the falsity of brain-death criteria. He is faced with a new mandate in the hospital, a new law, to force him to discuss organ donation with relatives.

The Chair: Dr. Brear, excuse me for interrupting you, but I'll have to ask you to bring your presentation to a close and for you to bring out the other elements of the presentation through question and answer. Please note as well that we already have the documentation in our hand, and we'll be using that collectively in the question-and-answer session.

If I were to allow you to go on with the rest—and I note that you have quite a bit more—we wouldn't be able to get into questions at all. Is that okay?

Dr. Michael Brear: I just would like to give maybe two quotations.

The Chair: Go ahead.

Dr. Michael Brear: This is a quotation from Dr. Truog of Harvard, where they established the criteria 20 years ago. Dr. Truog, an anaesthesiologist and professor at Harvard, says:

The diagnosis of brain-death is incoherent in theory and confused in practice. However, there is precedent for justified killing. The idea is not anathema to the public. Surveys show that one third of physicians do not believe brain-dead patients are really dead...but justify their actions.

He believes the deception of brain death has well served its purpose in preparing the public to tolerate the practice of harvesting of organs from the living.

Across the world in the last year or so, there has been evidence of the crumbling consensus of opinion on brain death. Dr. Tontifilippini of Australia wrote just a few months ago that, “to say that the brain-dead are dead is clearly a falsehood”.

The Chair: That raises a question, Dr. Brear. I want to ask you something. If the basic tenet of medical society is, “Thou shalt do no harm”, can you help the committee out by giving us an indication of what the position of the colleges of physicians and surgeons might be in this regard?

Dr. Michael Brear: I would think they would adopt an attitude that would sort of be summed up by the expression, “Thou shalt not kill”.

The Chair: Well, let me go back to, “Thou shalt do no harm”. Assuming one accepts all of the positions you outline, it would appear to the uneducated—i.e., non-professional—that there is a practice amongst physicians to accelerate, if not in fact induce, death.

Now, not being terribly sophisticated in the art of science and medicine, that strikes me as the ultimate expression of doing harm. Has someone brought this to the attention of the colleges of physicians and surgeons?

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Dr. Michael Brear: I don't know.

The Chair: Would it be a logical thing to ask any practitioner of medicine today why they would not have raised this with their own college?

Dr. Michael Brear: I have submitted an article on this to the Canadian Medical Journal, upon which this presentation is based. It was dismissed by the editor as uninteresting to the reader and too long, and easily done by a letter to the editor.

I think there's a certain attitude and a certain ideological belief in the establishment in medicine today. Yes, I think there's a certain view, and I believe certain views are not acceptable.

The Chair: Okay.

I'm going to go to questions from colleagues.

Dr. Elley.

Mr. Reed Elley: Oh, Dr. Elley.

This is most interesting—most interesting. I'm going to let other people perhaps address their questions to Dr. Brear and Dr. Oliver on the issues they've raised. Instead, I want to talk to Dr. Kluge, and ask him a question.

Doctor, you were quite forceful, I think, in your presentation, and seemed to me to be suggesting that somehow we as legislators ought to be enacting a law that would override family objections at the time of possible organ retrieval.

I must say, I have some question about that, and some concern. We're talking about biomedical ethics here.

Let's pose a situation that could occur if indeed this kind of thing were legislated by Parliament. What if the religious views of the parents were entirely different from those of the patient, and we had, at that point, entered into a regime where there was a law on the books saying one could override the objections of the family, and the result of this overriding of the moral and religious objections of the family at that time was that there was severe mental and emotional anguish caused by this action, and therefore, within the lives of, say, the mother and the father, depression resulted, and a great feeling of guilt that they were not able to stop this action at the time of their son's or daughter's death?

Do you think we then have the right to inflict that kind of emotional and mental anguish upon people simply to retrieve organs?

Dr. Eike-Henner Kluge: Let me put my reply into context by reminding you that the human tissue gift acts or their equivalents—and this is outlined in my brief and the study that accompanies it—in all the provinces have three sections.

The first section is definitional. As a legislator, I'm sure you're aware of the need for that. The second section deals with consent. The third section deals with punishment if consent is not followed.

The second section of the consent acts of all provinces states that the consent of the competent owner is “full and binding authority”. I'm sure, as a legislator, you're aware that “full authority” means no other authority is required, and “binding” means in fact that consent is binding, and it may be overridden only on pain, as outlined in the third section.

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The third section of the human tissue gift acts states that if the donation is made, the consent is given as specified in the second section. Anyone who knowingly ignores that is liable to imprisonment and a fine.

It seems to me that legislators do not put such pieces into legislation unless they mean what they say. In other words, the intent of section 3, in my estimation—and I speak as former director of ethics and legal affairs of the Canadian Medical Association, so I'm somewhat familiar with policy—is to signal that they intend that the law in fact be followed.

Therefore, with respect to your question of whether we should change the law, on a provincial level, clearly not. All one has to do is enforce the law.

At a national level, what would be required would be something similar to what in fact has been passed by all provincial legislatures, including by the federal government, with the exception of the Northwest Territories, now Nunavut, etc., where in fact we have an anomaly. It is the only place in North America where organs may legally be sold, because the law is silent on that issue. I refer you to my study for the Health Protection Branch.

With regard to your question concerning the feelings of the next of kin, let me put it to you this way, sir. Is it reasonable for a dying person to suffer the last agony knowing, or suspecting, that her or his last meritorious wish, which means everything to him or her—that is why she or he made that particular designation—is liable to be overruled by others simply for emotional reasons?

Mr. Reed Elley: Well, I don't think you've answered my question. You've given me a lot of legalese.

Dr. Eike-Henner Kluge: I would be pleased to, if you were to be specific.

Mr. Reed Elley: Dr. Oliver wants to comment.

Dr. Ruth Oliver: I'd like to comment as a psychiatrist. Mine is definitely the specialty that deals with long-term anguish and depression, especially in relation to the death of a loved one.

Many times when death occurs in a crisis situation like that, a lot of the things are new, such as brain death, etc. People do not have the chance to digest and fully understand, in the acute moment, what the full implications of a decision are.

As a psychiatrist, I have patients who, for instance, get into motor vehicle accidents. Years later, it is typical for the insurance to ask for all the old records. Many times I even get patients who have signed consent through their own lawyers, let alone the insurance letters.

My policy? Over 20 years I have learned the key word is “informed” consent. It is one thing to say you will donate all your organs when you're well and healthy, but nobody knows the circumstances of their own death. Nobody can predict exactly what those circumstances will be. Informed consent involves having some idea of the circumstances or the perspectives before giving consent.

Therefore, many times I find I'm calling patients back to say, “You've signed consent; let's have an appointment, and I'll inform you of what's in your chart.” If they still want to go ahead and release their records, I do so.

That, to me, is informed consent. My experience in other contexts is that most patients, when they fully realize the implications, reverse their decision to give consent.

That is why it is absolutely not okay to dismiss family. They are the people who know these persons the most. They've lived with them. This is who they trust. Therefore, although somebody in theory wants to give their organs, and that should be respected, if the circumstances of the death are different from what that person might have predicted, you don't know whether they would still say yes. Maybe the person closest to them, because they know the values or the beliefs or the principles of that person, can say, well, if they knew this, or if they knew that, they would not have given consent.

So I really don't believe the family should be left out of the circumstances of the dying patient.

Second, I really believe it's all very well to say legally we must adhere to the law, but informed consent is the critical issue, and I don't think that is being satisfied a lot of the time.

The Chair: Thank you, Dr. Oliver.

Madam Picard.

[Translation]

Ms. Pauline Picard: Dr. Oliver, in Quebec we have our health insurance card, and on the back of it we can indicate whether or not we wish to donate our organs, and then sign the card.

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Every time we go to a hospital or to see a doctor, as in all the other provinces, we show our health card. So doctors know what our wishes are. If I had a fatal accident, the hospital would ask for my health card, which would show that my wish was to donate my organs.

I think this is an individual choice. I am 50 years old and I am well informed, as are most people who sign the card. Why would the family's consent be required? As a responsible, intelligent adult, I have personally made the decision to donate my organs. You seem to be saying that there must be consensus among the family, among the individual's relatives, in order to tell a specialist to go ahead and retrieve an individual's organs.

[English]

Dr. Ruth Oliver: I have two comments to make on that.

First, I think even with the previous panel, most people use the term “after death”. One of the problems we have here is that if you review the literature worldwide, there is not a consensus on how people go about declaring people brain-dead. There needs to be a standard international protocol so that no matter which doctor examines that patient and makes a decision, all are using the exact same criteria.

So one of the controversies involved here is that if there is any suspicion that the person is not totally dead when the organs are removed, the principle on which you sign that donor card is not being met. That is the first thing.

I think family is very good at keeping doctors honest, making sure that whatever they believe their family member meant is in fact what is happening when the organs are removed.

The second thing I wanted to say was that, as I said before, if somebody signs that card, it's not specific enough unless that person says, “No matter under what circumstances my death occurs, I want my organs donated.” Because if the circumstances are unique in any way, it's not informed consent. That's what I'm saying.

If you add, in a legal document, that under no matter what circumstances a person dies....

It's like the issue of cremation. You can have a division in families. Some people do believe, some don't, but a family can take consolation, whether they agree or not, as long as it is written down that the person says, “I want to be cremated, no matter what.” The family can say, well, we don't like it, but we respect his choice.

As a psychiatrist, I've experienced that a lot. They'll say, well, that was his wish, and I have carried out his wish.

The overriding statement should say, “No matter what, I want my organs given.” I'd like it as specific as that.

The Chair: Thank you, Dr. Oliver.

Madam Minna.

Ms. Maria Minna: Thank you.

A number of the presenters have talked about brain death. Earlier there seemed to be, between Dr. Yun and other presenters, and even here this morning...about the criteria used, and how one decides. Dr. Yun earlier seemed to think that the electrical brain test was not necessarily done. Some people here say that it is done.

What I first want to know is whether there is a consistency in the medical field in deciding whether or not a person is brain-dead. I think that would be paramount to saying that we agree that brain death is...the person is dead or not.

Dr. Nelson, I think you talked earlier—and I want to make sure I'm correct—about waiting a few days. Now, were you suggesting that after a person has been declared dead today, you wait a few days to see whether or not the diagnosis or the decision is correct? This is important stuff.

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As well, there is research done in all medical spheres. How much research is going on in the field with respect to brain activity?

Then I have a second question that has to go to Dr. Kluge.

Maybe I'll just throw them all out and people can answer them—

The Chair: It all has to fit into the first five minutes, Madam Minna, so you can speak for 4 minutes and 59 seconds, if you like.

Ms. Maria Minna: Okay. I'll stop there for now, and see if I can get another one in.

The Chair: Dr. Nelson.

Dr. Robert Nelson: The criteria have been accepted by the Canadian Medical Association and are generally the same across the country. I should just emphasize, though—perhaps I didn't make it entirely clear—that generally the criteria indicate that one can make a diagnosis by bedside examination.

When there is some question about it, then we do other tests, such as an electroencephalogram, but in many cases this may not be mandatory or necessary. I think generally the basic criteria are the same, at least across Canada.

Sorry, but what was the second you asked?

Ms. Maria Minna: Is there a margin of error, then, when you simply do it by the bedside? The other had to do with research.

Dr. Robert Nelson: Oh, yes, about the time.

What I was trying to emphasize with the time is that if one finds that almost all the criteria are there but you're not quite sure about whether or not the patient, for example, is able to breathe when you turn off the respirator, if there is some detail that doesn't meet all the criteria, then we usually do not say that the patient is brain-dead at that point. We examine the patient after a period of time has passed to make sure that all the criteria are met before we actually do say that the patient is brain-dead.

Ms. Maria Minna: Dr. Kluge, you talked about a lot of things, but in particular you said the government should institute a program to allow selective growth of organs. The first time I heard of this was on one of these late television medical documentaries or what have you.

How advanced is that technology, and how realistic? Would it apply to things like heart and liver and lungs, which seem to be the major organs?

Dr. Eike-Henner Kluge: It's cutting-edge research. It's being done in part in the United States, in part in Japan at the present time. In fact, it is in the process of allowing limb buds to be regenerated, and they are in the process of trying to apply that to organs.

This is why I emphasize that there should be a program funded by the federal government to piggyback on the current research and pursue it further in that area.

Yes, it is viable. Yes, it is working.

Ms. Maria Minna: Could you grow a brain?

Dr. Eike-Henner Kluge: No, definitely not, under the circumstances.

Perhaps I can piggyback onto something that was said before. Some presenters may be under the impression that brain death is not legal in Canada. I would remind this committee that it was established in 1976, in the Manitoba Court of Appeal, in a case called Regina v. Kitching and Adams.

In fact, that is the basis on which the Canadian Medical Protective Association recommended to the Canadian Medical Association that in fact they come up with the criteria Dr. Nelson has talked about.

Again, to clarify something, if I may, there are two different concepts of brain death floating around. One is what is called a “whole” brain death, while the other one is purely “cerebral” death. Whole brain death includes the definition included in the legal case of Regina v. Kitching and Adams, which includes the brain stem. There is no known record of anyone surviving that at all, ever.

The Chair: Madam Wasylycia-Leis.

Ms. Judy Wasylycia-Leis: Let me just ask a couple of questions around ethical considerations that I don't think have been touched on in any great detail this morning.

Perhaps I'll start by asking a question of Dr. Kluge, and anyone else who would like to jump in. As time permits, feel free.

I would like to ask about the questions of the ethical considerations in terms of allocation of organs and tissues. From my understanding, and based on previous testimony, we do not seem to have in this country a systematic approach for determining access to organs or tissues. From what I understand, there seems to be a system with respect to liver transplantation, but I'm not sure about other areas.

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What needs to be done to ensure some type of justice and equality of access in this whole area of the recipients of organs?

The second question has to do with commercialization in this area. I think there's great potential, because of the demand, for commercial forces to take over. Some would say there is a reality today of market forces at work in this area. That raises all kinds of questions of ethics and questions of quality and safety.

My question is, what is the role of government in terms of protecting the public from market forces and the vagaries of the market in this whole area?

Dr. Eike-Henner Kluge: Perhaps I can take the last question first, because there are in fact criteria, with respect to your first question, not for anything except liver...but in fact for others.

With respect to your last question, I outlined some some suggestions to that in my brief on pages four to six.

In terms of commercialization, all western countries, so to speak, have come out against that. There are some jurisdictions, notably Brazil and India, where in fact it is perfectly legal to buy and sell organs. But most western countries in fact have opposed that, the reason being that the profit motive, among other things, should not be involved in a meritorious act.

Furthermore, once you introduce a profit motive, you have trouble with NAFTA because then it becomes a good for sale.

Furthermore, there are potential problems, I am told by my colleagues, with respect to having to redraft the Criminal Code and the Offences Against the Person Act, because you then distinguish between the body and the person. Therefore, if you can sell the body, then an offence against the person becomes an offence against the body, in which case the whole thing just goes up in smoke.

This may seem like pie in the sky, but in fact there are some serious legal problems involved in that.

Furthermore, who should reap the profit? Should it be the next of kin or the individual?

Furthermore, there are some studies on anticipatory sale, making a futures market for organs. The question then becomes, who guarantees the quality of these organs? Would you make sure there are lifestyle-monitoring police to ensure that somebody who sells an organ in fact provides an organ that is fit for the purpose, as in a sale of goods, of course, as required for something being fit for the purpose?

Again, I go through these in my brief. I simply touch on these here.

Finally, of course, there's the fact that this goes against the very notion of the right to self-determination of the individual in terms of a person, not as a body, when we gave up slavery. There is no ownership legally in human bodies, but that doesn't mean we don't have a right of disposition. As soon as we commodify, we conflate again the right of disposition and the right of ownership, and we're back to slavery.

The Chair: Dr. Rolleston, did you want to comment on that? You want to stay away from that.

Voices: Oh, oh.

The Chair: Ms. Wasylycia-Leis, a very short one.

Ms. Judy Wasylycia-Leis: Let me ask you, Dr. Rolleston, about the whole question of an appropriate regulatory framework for dealing with ethics in research.

From my understanding, although Canada hasn't fared very well in terms of an active donor rate, comparatively speaking, we seem to be heading the world in terms of research into xenotransplantation. Are we fully informed of all of the research that is going on in this area and what guidelines are at work to ensure that we're proceeding on the basis of an ethical framework and on the basis of protecting, again, the public from any egregious developments?

Dr. Francis Rolleston: This is an area that is very much in flux. It's a new area. One of the frequent suggestions is let's hold a moratorium until we work these things out. The difficulty is, you don't work them out unless you have experience and information.

It brings together the question of the treatment of animals as commodities, which is a fact that is very important. It brings the question of the danger of transfer of diseases across species boundaries by implanting tissues into new animals. That requires an enormous amount of research.

The issues of the transplantation and the decision-making processes around the research, I would suggest, are well done in terms of the research involving humans, as long as the consent process is adequately addressed, which of course is the essential issue.

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The other issues of safety are matters for the Health Protection Branch, and they are looking at them quite hard, as I understand.

The Chair: Dr. Rolleston, I don't have a lot of time left. I'm going to divide the following slot available between Madam Ur and Mr. Vellacott.

Madam Ur.

Mrs. Rose-Marie Ur: Thank you, Mr. Chair.

My question is addressed to you, Dr. Nelson, regarding ethical concerns. Do you not think the ethical concerns in transplantation can probably be addressed by, if we have the qualified people, whether it be the acute care team as well as the procurement team, setting them up so that there's a balanced approach there? That would address some of the ethical concerns that have been addressed at this particular meeting.

Dr. Robert Nelson: I'm not entirely clear on the question, except that I think probably the best guarantee—and this is what I've found from personal experience of obtaining organs for donation—is the rapport the treating physician has with the patient and family at a time long before the problem or the question of organ donation comes up at all.

I must say, I'm a little bit surprised by some of the discussion implying that there is often a disagreement between what the patient would have wished and what the family wishes. In general, in my dealings, most of the time the family will say, well, my daughter or my wife or whoever wanted to donate her organs, and I want to fulfil her wishes.

I think Dr. Dossetor, or someone else earlier this morning, mentioned having a team of people approaching the families. I think that's an excellent idea, because most of the time these teams are very sensitive to the family and to the situation at hand.

So I think that part of it, if this is what you're referring to, is an excellent idea. I think, however, it's very important that we maintain the integrity of the treating team and the team involved in caring for the potential recipient. I think these have to be kept apart.

Mrs. Rose-Marie Ur: I guess that's what I was trying to say. That's where you get the ethics in, when you have the two teams involved.

Dr. Robert Nelson: Yes. I think these have to be separate.

Mrs. Rose-Marie Ur: You made that point about family. I often wondered, listening to presentations, how often it really occurs where families say no to a donor's wish. Is it really that prevalent, or are we just assuming it is?

Dr. Robert Nelson: I don't know.

Dr. Eike-Henner Kluge: The data provided in my brief, from Ontario and Quebec, show 35%.

Mrs. Rose-Marie Ur: Do I have one more?

The Chair: No, I'm going to go to Mr. Vellacott. Thank you.

Mr. Maurice Vellacott: I have to be up front, I guess, and state that I had some questions or queries on the issue of brain death before, and now, probably more than ever, I have some reservations. I'm jolted, frankly, when we hear that we give anaesthetic to the so-called donor when they take organs from him or her.

Just as a comment, first off, before I get to my question, I would be very interested to get the written criteria that I think you mentioned you have, Dr. Kluge, from the CMA.

Dr. Eike-Henner Kluge: They are available in Dr. Nelson's—

Mr. Maurice Vellacott: Okay, thanks.

Dr. Eike-Henner Kluge: With regard to the anaesthetic, it may be important for you to know that the reason anaesthetics are given is not to kill pain. Anaesthetics also serve, as Dr. Nelson will point out, as vasopressor drugs, controlling all sorts of body processes. In fact, that is the major reason—

Mr. Maurice Vellacott: Yes, I'm aware. I'll just interject that I'm aware of some of that background. It's just interesting to me that, for whatever the reasons, anaesthetics are required.

Quickly, Dr. Kluge, just yes or no, is my impression correct that doctors no longer take, or are required to take, the Hippocratic oath?

Dr. Eike-Henne Kluge: I have met personally four physicians in my career...and I've met thousands who in fact have taken it.

I don't know whether my colleagues here—

Mr. Maurice Vellacott: I guess my question, though, is does a doctor have to take the Hippocratic oath any more?

Dr. Eike-Henne Kluge: No.

Mr. Maurice Vellacott: Okay. Thank you.

I had the privilege in my former life—I call it my “PMP” life, or pre-MP—to work as an orderly. I did chaplaincy work, and was elected to the historic first-in-the-country Saskatoon District Health Board in 1995, with a budget of about $300 million. There we would discuss from time to time this thing about informed consent.

I would be interested to hear the response of each of the panel members on this. In your view, is signing, as I did at one point, on a driver's licence whether you would donate or not, or an organ donor card, or on a a tax form or whatever, in that simple manner, informed consent if the potential donor has not had the process or the procedure explained?

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My view of informed consent involves somebody sitting down and explaining what would occur, whether by slides, pictures or videos, to give a more graphic understanding of the process.

With that in mind, from a health board context—and we talked about the legal suits that might be incurred and so on if there was not proper informed consent—is simply signing the back of a driver's licence, yes or no, informed consent?

We can run down the line, I guess, starting with Dr. Brear.

Dr. Michael Brear: I would say definitely not. I would agree with Dr. Oliver here that to inform a patient of the total conditions that may apply is extraordinarily difficult.

For example, to have an honest, informed living will, the document would be long and deep to explain all the possible clinical situations that might apply.

Therefore, to simply have a card that says, well, yes, I want to donate, means they would have to have access, or to speak to someone who has access, to the world's literature, because there is hopeless confusion and division around the world on this issue of brain-dead criteria.

Therefore, I would say nobody in Canada who signs a donor's card has informed consent. Absolutely not.

The Chair: Dr. Rolleston.

Dr. Francis Rolleston: Informed consent is clearly essential to the research function. There's a very strong belief that the actual consent form is not the informed consent. The informed consent is the process that leads to the decision of whether or not to sign the consent form.

Mr. Maurice Vellacott: And is there that?

Dr. Francis Rolleston: That is the critically important issue.

On the other hand, I think the issue of informed consent is one in which the individual being asked for his or her consent probably is the best person to decide whether he or she has enough information to make the appropriate decision.

The Chair: Dr. Nelson.

Dr. Robert Nelson: With regard to informed consent, as Dr. Brear has mentioned, the informed consent could be as long as you wanted to make it, but to my understanding, informed consent is when the information given to the patient is the information necessary for them to make a decision with regard to the outcome or the implications of what they're consenting to.

Mr. Maurice Vellacott: I didn't know zip when I signed the donor part on my driver's licence.

At any rate, do you know what I'm saying?

Dr. Robert Nelson: Yes.

Mr. Maurice Vellacott: I didn't know anything. No doctor sat with me. I didn't know anything, or not as I do at this point.

The Chair: Dr. Eike-Henner Kluge.

Dr. Eike-Henner Kluge: With respect, I would like to point out that we're not dealing here with informed consent to treatment, because the dead person is not in need of treatment when the organ is removed. It is rather analogous to informed consent for what shall happen to your body in terms of burial.

The informed consent form and process with respect to what Dr. Rolleston says for what is required for the disposition of your human remains is not subject to the same ethics of consent as that which happened to you when you were suffering or undergoing treatment. I speak here as a specialist in medical ethics.

Really, the issue isn't whether you have a long informed consent form for treatment that will happen to you but rather whether you require that kind of process for disposing of your human remains.

The Chair: Dr. Oliver.

Dr. Ruth Oliver: Getting back to the brain-death issue, we don't know that they're dead. Most people would rest more if they knew for sure it was after.

The Chair: If you check something off, is that informed or not?

Dr. Ruth Oliver: No.

The Chair: Okay. Thank you.

I want to thank you very much, but I want to ask a brief question or two myself.

Dr. Kluge, previous presenters have indicated that the issue of mandated consent was present in Spain when Spain had a very low donor rate, and that therefore this issue of mandated consent may not be as germane to the low donor rate as some people would hold out.

Do you share that view?

Dr. Eike-Henner Kluge: Pardon me, but I'm not sure I understand your question.

The Chair: Well, once somebody has given consent, we can't have the family override.

Mr. Eike-Henner Kluge: I would point to a cultural difference between Spain and Canada. I don't have data on Spain. I do have data on Canada. The data come from the transplant societies themselves—namely, that there is a 35% loss when families in fact do override. Those are their figures.

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So mandated request would work only if in fact at the same time the protocols were changed so that next of kin would not override the response that has been given. Of course, one would want to see that coupled with appropriate counselling.

Here I refer you to an experience that may not have been mentioned to you. It comes from Pittsburgh, from one of the pioneers in transplantation, Dr. Starzl. He in fact was faced with a similar problem and instituted a counselling program. He in fact did follow the request of the patient but counselled the next of kin. He ignored their wishes and simply did counselling. The retrieval rate was in fact almost identical with the donor rate. It didn't solve the organ problem, but it certainly ameliorated it a great deal.

So there has to be this combination of mandated request plus a change of protocol. If the transplant societies still continue to ignore what in fact they should be doing, you're going to continue to lose those organs.

The Chair: Then there's the question of penalties, which you raised. You talked about legislative penalties that may have consequences that are either economic or other.

To whom would those penalties apply? You've identified two sets of individuals—one, families that may not be supportive of the consent, and two, the transplant societies themselves, which do not respect the consent. To which are you referring?

Dr. Eike-Henner Kluge: I'm referring to the latter.

I'll refer you to a legal case from Vancouver that never reached judicial determination because it was settled out of court. In this case, it was known that somebody had donated his organ. The next of kin objected. They did not retrieve the organ. Somebody died because the organ was not retrieved. They tried to institute a suit under the current legislation in effect in B.C. and it was settled out of court.

The appropriate person to whom to address this would be the persons responsible for not following the legal wishes, in all provinces at the present time—namely, the societies.

The Chair: But the CMA and college of physicians as bodies would be supportive of penalties imposed on their members?

Dr. Eike-Henner Kluge: With all respect, sir, the CMA, incorporated in 1867 by an Act of Parliament as a parliamentary corporation, speaks only for 60%, at best, of Canadian physicians. Its sole interest, and in fact mandate, is to advance the private interests of physicians, not of health care. That is why the CMA challenged the Canada Health Act.

So I find it rather peculiar that you would ask me that question.

The Chair: Well, this is a peculiar environment.

Dr. Rolleston, my last question is for you. I was looking at some statistics on the health profile of all nations, classified on a yearly basis. We always come out on top. In the number of physicians or doctors per 100,000 population, I note that Canada is listed at 221 and Spain at 400.

Are you aware in your studies of those figures being variables that impact directly on donor rates?

Dr. Francis Rolleston: I'm sorry, I have no information on that question.

The Chair: Okay.

Then all I'm left with is the pleasant task of thanking you on behalf of all colleagues in the committee for a most interesting set of presentations and for the candour with which you addressed our questions.

On their behalf and mine, thank you very much.

The session is adjourned until the call of the chair.