HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, March 16, 1999

• 0914

[English]

The Chair (Mr. Joseph Volpe (Eglinton—Lawrence, Lib.)): Thank you for your patience, ladies and gentlemen, colleagues.

Pursuant to Standing Order 108(2), we will recommence the study on the state of organ and tissue donations in Canada.

Today we have two panels. There's quite a large number of people. We will try to accommodate everybody the best we can. We have a reduced quorum because a couple of other committees have apparently stolen away some of our members. We will make a couple of adjustments as we go along. When some of our opposition members come in I'll make those announcements.

• 0915

In the meantime, let me begin by introducing members of our first panel. For those who are in the audience or for members on either side of the table, we'll be looking primarily at issues that relate to ethics, practices, and legislation today. We'll be dealing with particular areas the committee hasn't looked at in great detail to this point.

I know all of our witnesses will disagree with my introduction, but I hope it covers the ballpark, so you'll be able to fit in there.

I will begin with brief introductions, and if there's anything else that needs to be said, I'll ask the witnesses to make their presentations or add introductions to their presentations as we come to them. This will be in order of their appearance.

First is Dr. Sam Shemie, the principal investigator at the Hospital for Sick Children in Toronto. He's accompanied by Dr. Diane Hébert, who's an expert on transplantation. Welcome to you both. I'm familiar with that city. I hate to say I've been at that hospital as well, not because it isn't a great place, but I always try to avoid hospitals if I can.

From the Delaware Valley Transplant Program in Delaware, Pennsylvania—

Mr. Howard Nathan (Executive Director, Delaware Valley Transplant Program): Philadelphia.

The Chair: —Philadelphia—we have Howard Nathan, who is the executive director. A special welcome to you, coming from borders outside Canada. I hope you'll enjoy your stay here, as I know we will enjoy your presentation.

We have Dr. Carole Guzman, who is associate secretary general at the Canadian Medical Association. Bonjour, madame. With her is Dr. Gordon Crelinsten, chair of the committee on ethics for the Canadian Medical Association.

From the Canadian Healthcare Association we have Mr. Larry Odegard, executive director. He has come from B.C. That's a little bit farther away than Pennsylvania, but he's still on our side here, Nathan. Ms. Kathryn Tregunna is director of policy development at the Canadian Healthcare Association. I didn't ask whether you came from the other side of the hills either.

Finally, from the Toronto General Hospital in Toronto, we have Colleen Shelton, who is a clinical nurse specialist. Colleen, you're welcome as well, of course.

Can we start with Dr. Sam Shemie? For the doctor and all of our other witnesses, typically we have about a five-minute period of introduction. I realize today, because we have so many here, if I gave everybody five minutes I'm not sure if we'd cover everything. But I will treat you as one witness and try to be very flexible with the clock. I think my colleagues will give me that flexibility. I see them saying yes. This is sort of like the monastic silence and therefore its acquiescence.

Dr. Shemie and Dr. Hébert have some presentations that won't be all that visible on the monitors, so they have a handout. Unfortunately, it's not in both official languages, but it may be essential for us to follow some of the slides. I will authorize that they be distributed, and I'll see that my colleagues on the other side receive the appropriate type of explanation.

I think Howard Nathan will have similar difficulties. In the interest of making sure members have at least the graphs before them that are legible, even if they are only in one language, and especially because he comes from another place, I will authorize that distribution as well.

Ladies and gentlemen, after all your presentations are finished, we'll go to members for the question and answer session. Some members will be coming in and maybe floating back and forth. It won't be out of any disrespect, so please accept the fact that they will be going back and forth. It's typical of the functioning of a committee.

Dr. Shemie, you're first.

Dr. Sam Shemie (Principal Investigator, The Hospital for Sick Children): I'll leave the floor to Dr. Hébert.

The Chair: Chivalry lives.

• 0920

[Translation]

Dr. Diane Hébert (Transplant Expert, The Hospital for Sick Children): The purpose of our presentation here this morning is to draw the committee's attention to pediatric transplants, a subject that is often forgotten when discussing transplants in general.

Our presentation is divided into two parts: first of all, I will present the specific aspects of transplants in children and the consequences of the lack of organs for that population; after that, my colleague Dr. Sam Shemie will present our experience of organ donation in our hospital and will make recommendations and suggestions on ways to increase organ donations for pediatric patients.

[English]

The official need of children, infants, and adolescents with transplantation comes from different areas. First is the disease that leads to organ failure. Secondly is their size and their age. What really happens to these children initially, after they go on transplant lists, is they have to wait quite a long time. What really leads them to be put on transplant lists, in most instances, is congenital or familial diseases. They are the most common cause of organ failure in the pediatric population.

The age of presentation of end stage organ failure may begin at birth. In fact, some children with congenital heart disease that will go on to heart transplantation will be put on a transplant list even before they are born, at 36 weeks gestation, as the diagnosis of severe congenital heart disease can be made in utero. Finally, some children will simply be placed onto the transplant list either during infancy, childhood, or adolescence.

What really happens to these children while they're waiting on the transplant list? First of all, many of these children, if they have to wait for a very long period of time, will get very sick and many will die due to the lack of availability of organs. Secondly, end stage state organ failure affects growth and psycho-motor development in these children, so even if they get transplants, they will have some catching up to do.

As you have heard in this committee from many parents who have children on the waiting list, there are many psycho-social consequences to a family and to the child who is waiting for a transplant. First of all, there is the chronic disease and increased burden of care on these parents. Secondly, there is always the question “Will my child be able to get an organ, or will my child die”? Finally, because pediatric transplantation requires specialized care that is only available in a small number of centres, many children and their families need to relocate for a certain period of time to big centres, which really causes a lot of havoc in a family.

It is interesting in this day and age that because of the success of pediatric transplantations, the number of children and adolescents who require transplants is increasing, and the only limitation right now is organ availability.

I will briefly review the outcome of transplantation in children to show that this is really the best way to treat many diseases; otherwise the children will die. The outcome will vary by the disease leading to organ failure and the age or size of the recipient. What is really important in pediatrics, and the difference between pediatric patients and adults, is for certain graphs it is important for a child to get a matched-size donor. We cannot put an adult heart into a baby. So it is very important that pediatric organ donation also be considered.

The number of children who have had organ transplants in Canada up to 1997 is over 1,000, and this number increases every year. Around 100 children receive transplants. The outcome for each organ transplanted is shown in the handouts. It has improved and approaches 80% at one year and about 70% at five years.

What is really somewhat disturbing, though, is the number of children who will die on the waiting list while waiting for organs. In the past five years, in the data from Ontario, about 10 children per year have died while on waiting lists. Hopefully, some results from this committee will help.

I will now let my colleague Dr. Shemie discuss organ donation in the pediatric population. Thank you.

The Chair: Thank you. Dr. Shemie.

Dr. Sam Shemie: We were interested, in addressing the issue of the shortage of pediatric organs in our institution, in getting insights into things we do well and things we could do better. Dr. Hébert referred to some of the issues in pediatric organ donation that make it distinct from adult organ donation. In particular, children have been poorly studied in the past.

There is the issue of parental consent. A child is a precious member of a family, and when that child dies and becomes a potential organ donor, the impact on that family is huge in terms of emotion.

There is the issue of the size restriction of donors and transplants, as Dr. Hébert referred to, and the site restriction. There is generally one pediatric institution in every major city across Canada, as opposed to many, many adult institutions that may deal with organ donors.

• 0925

The logistics of organizing pediatric organ donations are much simpler than those for the adult counterparts, because the number of hospitals you have to deal with is much smaller.

I'd like to take you through a typical sequence of events that might lead to a child becoming a potential organ donor. The most common conditions that might lead to that are a traumatic head injury from a motor vehicle accident, drowning, or sudden infant death. All of these are acute, sudden, and unexpected injuries in previously normal children. The impact is huge on that family.

These conditions lead to a devastating brain injury that requires intensive care management and life support. If that brain injury is severe, that child will evolve, unfortunately, to brain death.

Please let me make a couple of comments about brain death to remind you that it is defined as the complete and irreversible cessation of brain function that is medically and legally equivalent to death, in this country, in North America, and in many countries around the world. Regarding the diagnosis of brain death, first you have to recognize that it's there; second, you have to diagnose it; and third, you have to confirm it, and the confirmation has to be done by two separate physicians, at two different points in time, by rigid and strict criteria.

There are only two possibilities after brain death is diagnosed. That is death without organ donation or death with organ donation. There is no other choice. When a child or an adult is brain dead, that person will die. There is no question about that. The question is whether they die donating their organs or without donating their organs.

There are very few things that are black and white in life, but brain death is one of them. The issue is that we cannot change all the events leading to a child becoming brain dead. That is out of our hands. In fact, if you look at the types of injuries that cause brain death, all of those are decreasing in incidence. For trauma this is because of safety precautions, seatbelts, car safety, a decrease in drunk driving, and safer cars. People positioning their children on their backs has markedly reduced the incidence of sudden infant death. So the number of conditions that lead to brain death will decrease over time. We can't change that. What we can change is what happens once that child is declared brain dead, in terms of the approach to the family.

Because of the issue, we applied to the Kidney Foundation of Canada for support in looking specifically at the issue of organ donation in children. We reviewed an eight-year experience at the Hospital for Sick Children from 1990 to 1997. There were 153 suitable patients. That's approximately 20 per year. When I mean suitable, I mean the children who are brain dead and medically eligible for organ donation. Of those, 128 organ donations were requested, which means that 16% of families were not approached for consent for organ donation. Of the families who were approached, 63% said yes, which is very good, and those families are heroes. But 37% did not consent. The characteristics of families who do not consent are that the child is of younger age and English is generally not their first language, or they come from a multicultural background. Clearly, there are issues of communication and cultural differences that need to be addressed in this issue.

After consent was granted in those 63% of patients, the majority of them, nearly 80%, went on to actual donation. However, over 20% of them did not proceed to donation because of medical instability that led to dysfunction of their organs and did not allow them to be sufficient for transplantation.

Overall, if you look at the bottom line, the actual donation rate, in our experience, is 41%, which is reasonable, but that means 59% of families and children who could go on to organ donation do not do so for multiple reasons. Each child who goes on to donate provides four organs for a potentially life-saving transplantation in four other children, so the impact is quite significant.

Because of the deficiencies we identified retrospectively, we have now implemented an organ donation team to address each of those issues.

The first issue is that all families should be approached and be given the opportunity to consent to organ donation. That should be mandatory.

Second, there needs to be coordination around the consent process. That requires somebody who is devoted to that position, is knowledgeable, sensitive, and compassionate, and has the ability to call on interpreters or cultural and religious liaisons to communicate better with families around issues of death, organ donation, and transplantation. That process needs to be carried out over time. It shouldn't be a rushed situation. There should be multiple meetings with these families.

• 0930

The third thing—I think it's very important—is the aggressive medical management of the potential organ donor to make sure those organs are in optimal functioning condition for transplantation.

In summary, we feel pediatric organ donation has a distinct position as compared to that of adults, and it needs individual attention. From a national strategy point of view, we feel there should be mandatory reporting and referral of all brain death in all age groups in the childhood population, from newborns to adolescents, and that an organ donation team, similar to the model we've established at the Hospital for Sick Children, should be available to each pediatric centre and should include a mandatory request to each family, coordination of all aspects of the consent process, and devoted and aggressive medical management to the potential organ donor. We at the Hospital for Sick Children would volunteer to help in any way the government would see fit in order to establish a devoted pediatric national program for organ donation.

Thank you.

The Chair: Thank you very much, Dr. Shemie and Dr. Hébert.

Let's go to Mr. Howard Nathan, the executive director from the Delaware Valley Transplant Program.

I remind colleagues that some of the presentations may not be in both official languages, but they'll be so provided in the course of the next week.

[Editor's Note: Slide Presentation]

Mr. Howard Nathan: Thank you, Chairman Volpe.

I'd like to thank the committee for allowing me to come to Canada and give this testimony. I wanted to briefly talk to you about some legislation in the state of Pennsylvania, which has now actually become the federal mandate in the United States.

As Mr. Volpe said, the Delaware Valley Transplant Program is a regional donor program in Philadelphia. We represent a coordinated effort of 12 hospitals that perform transplants and a network of 166 hospitals that refer us potential organ donors. It's a population base of 9.8 million people, and 30.4 donors per million were recovered in 1998, which I'll talk about in a minute.

To give you a perspective, just in our region there are 3,000 people waiting for transplants. About two-thirds of those are kidney patients. So there's quite a public health crisis in Pennsylvania and the rest of the United States. There are about 65,000 people waiting for transplants in the United States, just to put things in perspective.

One of the things we focused on just now was, as Dr. Shemie presented, kids waiting for transplants. Certainly, this is about patience.

One of the things Dr. Shemie just presented had to do with potential donors. This is a study that was done to determine the potential in the United States. The reason there's a shortage in general is that there are just not that many donors, period, because of the number of people who become brain dead. Out of 2.2 million people who die in the United States, one-half of 1%, statistically, are even eligible to become donors. Similar to Dr. Shemie's data, about a third actually become donors, 25% are never referred to the donor program by the hospitals, and about half of the families who are asked, or about another third, say no to donation. The two issues—the families who say no and the issues related to hospitals not referring donors to the donor program—are what I want to focus on and are the reason for our legislation.

I'll provide a little background. A legislator presented what's called presumed consent legislation to basically say that everyone in our state was to be a donor unless they said no. I'll show you some of the headlines that resulted from that in a minute. The next thing we did with that donor study that we extrapolated to the U.S... And most importantly, when this started out we wanted to get cooperation from everybody, similar to who's around the table—physicians, hospital administration, hospital associations, and the donor programs in the state.

This is what the editorial said about presumed consent: that it just wouldn't work, that the government's role is not to coerce people to mandate donation in every case, but to still request it from families. So we took advantage of the attention to this and changed the proposed law to the following.

• 0935

The law was passed in December 1994 and implemented in March 1995. It's called Pennsylvania Act 102.

Interestingly, the Governor of Pennsylvania, Robert Casey, a year and a half prior to that had a heart and liver transplant, which was somewhat controversial in the state. He went on to take his office again and sign this into law.

The law does three things, and I'm going to focus on two of them. The first is it reinforces patient autonomy. While people are alive and well, they can make a choice for donation through their driver's licence or other document of gift. I won't be talking about that, but I will be talking about promoting public awareness and changes in how hospitals participate in the donor system.

The first is a driver's licence registry where people can say yes to organ donation, and I'll show you a copy of that in a minute. We have 24-hour access to that donor program. So in those tough situations, not necessarily with children but with adults, where we have a person who is brain dead, we can call the registry and see if that person was on the registry and make sure the family has that information.

The next thing it did was establish a fund for awareness where you could actually check off a dollar extra on your driver's licence, and a fund for public education, for school education, has been generated and there's actually now more than $1 million in the fund to start doing more education.

One controversial aspect I won't touch on is some reimbursement for donor family funeral expenses, which is a total pilot program of a voluntary benefit program, all from these voluntary contributions.

This is a picture of the driver's licence. It's not a great picture. Nobody likes their driver's licence picture. But you can see electronically under the picture is “organ donor”. That is registered in a computer system in our state, and several other states in the United States now have this, so that the donor programs have access to this 24 hours a day.

There are now three million people out of eight million drivers in less than three years who have registered, even without any marketing. We haven't gotten the money out on the street to do this advertising and marketing. So there's a great amount of awareness already in people's minds about signing up to be a donor.

The most important part of the legislation that I'll talk about has to do with changes in hospital participation. What it did was change the system. Rather than identifying potential donors, as Dr. Shemie indicated, rather than putting the burden on the hospitals, physicians, and nurses, this puts the problem with the donor programs. So rather than trying to figure out who's a donor and who isn't, this requires hospitals to call on all people who die, not just brain dead patients. What happens is the donor program determines who's suitable and then the request is made by a trained requester, typically teamed with a physician and a nurse from the hospital. The team is led by the donor coordinator.

The next thing it did was require medical record reviews to do this type of compliance measurement to see who was a potential donor, who might have been missed, and there's actually a fine provision for each hospital, $500 for each instance of non-referral. This has never been levied, but the concept was that this is a public health problem and that hospitals have to comply. It got people's attention from the highest levels, and it's been quite a cooperative effort since.

The referrals, of course—and you can see this red line—went up significantly from about 200 phone calls per month through our donor program to about 4,000 phone calls a month. It did two things. One is it obviously got people into the system. The second thing it did was get hospitals used to the fact that when somebody dies, that person could be a potential donor, regardless of how they died or the cause of death. Many of these people are obviously ruled out within about a minute or two because of age or other criteria, but the hospitals actually felt it made a lot of sense to put the burden on the donor program to make these decisions.

We have people who triage these calls to appropriate professionals, and within minutes an answer can be given. Then immediately, if the person is ventilator-dependent and a potential donor, a transplant coordinator—a donor coordinator—is dispatched to the hospital, and upon arrival, within an hour, can begin the process of coordinating a donation.

• 0940

The results have been phenomenal. Donation has increased 43% in the past four years. Kidney transplants increased 53%; extra-renal transplants, hearts, livers, pancreas, and lungs, 62%. Overall transplants increased 57%. It's unprecedented in the United States and the world in terms of these increases.

As to the track record, you can see in the last four years a continuous rise in donations, from about 200 per year to now about 300 per year.

In regard to the donation rate, about 3.1 organs are transplanted per donor. Then also the donors per million, which is a measure of performance, is at about 30.4 donors per million. We came from just above the average to, now, about the number one or number two program in the country, with the largest volume in the country.

Also with tissue donation, bone donation increased 35% and eye donation increased 10%. This is with lowering the age. The quality of tissues recovered is significant, because we're hearing about all people who die, and bone and eye donation can come from anybody who dies under the age of 65 years or so, because those tissues can be recovered after the heart stops, about 24 hours afterward.

I apologize for rushing.

The model program got a lot of headlines in the U.S. Since its implementation, other states have implemented it—about seven other states between 1995 and 1998.

Recently, in August 1998, as a condition of participation of hospitals, all hospitals in the United States have been required to follow this routine referral mandate. They have about a year to implement it. Again, there were questions and concerns about it, but the idea is cooperation between the health care community and the donor programs, who are in essence the people who are the experts, who do this every day.

Because of the decoupling of the request, meaning that you separate the conversation of the death of a loved one so that the donor program comes in and talks about donation in a very sensitive way, consent rates have increased, not quite as high as Dr. Shemie indicated. Certainly pediatric hospitals usually have a higher consent rate, but our overall consent rate now approaches 60%.

Last but not least is public education. Whether you like him or hate him, Michael Jordan lent his image to organ donation. He did it for free. It's about the only thing he ever did for free. It has been a national campaign. Certainly the idea is getting the people on the streets talking about donation and getting general acceptance. This is what we want people to think about and talk about around the dinner table. So the national slogan in the U.S. is “Share your life. Share your decision”. Most importantly, talk about it with your family.

Thank you very much.

The Chair: Thank you, Mr. Nathan.

We'll move quickly along to Doctors Carole Guzman and Gordon Crelinsten.

I think you're going to be doing the speaking.

Dr. Carole Guzman (Associate Secretary General, Canadian Medical Association): No, Dr. Crelinsten will.

The Chair: Okay, go ahead, Dr. Crelinsten.

Dr. Gordon L. Crelinsten (Chair, Committee on Ethics, Canadian Medical Association): Thank you, Mr. Volpe. I am joined today by my colleague, Dr. Carole Guzman, associate secretary general of the Canadian Medical Association. We thank the committee for inviting us to participate in these important deliberations on the state of organ and tissue donation in Canada.

The Canadian Medical Association is a voluntary, professional organization representing the majority of Canada's physicians and comprising 12 provincial and territorial divisions and 43 affiliated medical organizations.

[Translation]

The mandate of the Canadian Medical Association is to play a leadership role among physicians and to promote a higher standard of health and health care for Canadians.

As it has always done, the Canadian Medical Association will continue to defend health issues that are in the interest of all Canadians before this committee and other public forums.

• 0945

[English]

In keeping with ongoing policy review processes within the Canadian Medical Association and in light of current developments in this field, the Canadian Medical Association's policy on organ and tissue donation is currently under revision. Nevertheless we would like to offer some thoughts on the broader context of organ and tissue donation.

Organ transplantation is an important treatment option for several medical conditions, and the shortage of available organs is a significant barrier to accessing this treatment choice. Therefore the commendable goal of exploring different means and measures to increase the supply of organs for medical treatment must be pursued.

Although the goal of increasing the availability of organs for those transplants that have become standard medical treatment is ethically unassailable, not all means or measures to achieve this end are necessarily or equally so. The respect for autonomy or personal choice is a core value in Canadian society and in our health care system. This value underpins transplantation medicine insofar as organ donation is grounded in the “gift” philosophy. Any means or measure to procure organs will tend to be more ethically dubious the more coercive they are or the less they respect autonomy, personal choice, and the concept of altruistic giving.

The CMA supports the concept of a national organ donor registry insofar as it can balance the goal of increasing the supply of organs with the preservation of the values of personal choice and uncoerced giving, at the same time respecting the need for privacy.

In assessing organ and tissue procurement means and measures, it is important to recognize that the primary obligation of physicians in the context of a direct patient-physician relationship is to the patients to whom they have an immediate duty of care. For some physicians this duty is to the potential recipient, while for others it is to the potential donor.

Physicians, by the nature of their work, also form professional relationships with the families of patients, to whom they also have obligations, even after their patient has died. Increasing the supply of organs will be more problematic if it adversely impinges on this fiduciary relationship and compromises the physician's ability to advocate for and to discharge obligations to both patients and families.

For that reason, the Canadian Medical Association believes that preferred means and measures for increasing the supply of organs should put less emphasis on decision and persuasion at the time of crisis, when the patient is dead or dying, and greater emphasis upstream, where decisions can be taken and clarified to families in circumstances that are less emotionally demanding and the precepts of informed consent can be more carefully paid attention to.

Public education, of course, is central to any comprehensive organ procurement strategy. Physicians not only can play an important role, but are willing to do this in such areas as education, not only of themselves and other health care professionals, but also of their patients and their families. This in turn may require physicians themselves to become better educated on these matters.

There are other important values that should be considered when assessing means and measures to increase the availability of organs for transplantation, such as privacy. When we create national databases and registries, we need to exercise caution in order to protect individual privacy and consent.

The field of transplantation raises numerous other issues that the committee should also consider in its deliberations. Although many transplantation procedures such as kidney and heart transplants are now standard medical care, others are more experimental. Developments in transplantation medicine are raising questions for which traditional ethics review processes may not be adequately prepared. The potential risks and harms to the public and to the individual associated with xenotransplantation, for example, are extensive and very difficult to gauge. It is important that issues arising in this regard be discussed and considered more publicly, as well as in the context of traditional ethics review.

• 0950

To conclude, Mr. Chairman and members of the committee, the Canadian Medical Association thanks you for inviting us here today. We will continue to follow the deliberations of your committee closely and will advise you of our progress in reviewing our policy.

Thank you.

The Chair: Thank you very much, Dr. Crelinsten. I guess I should have introduced you as a member of the Canadian Medical Association just before you began. I didn't, so I hope my reflection on that will be sufficient for those who have been following the deliberations on their television.

Let me now go to the Canadian Healthcare Association. We have two individuals here, Larry Odegard and Kathryn Tregunna, but I understand Kathryn Tregunna, the director of policy development, is going to give the presentation.

Go ahead, Madam.

Ms. Kathryn Tregunna (Director, Policy Development, Canadian Healthcare Association): Thank you.

The Canadian Healthcare Association appreciates the opportunity to appear before the standing committee today. As many of you know, the Canadian Healthcare Association is a federation of provincial and territorial health associations. Historically, CHA has been the national voice for hospitals. In 1995, we changed our name from the Canadian Hospital Association to the Canadian Healthcare Association to reflect the broadening scope of our membership. Today, through our members, CHA represents hospitals, long-term care facilities, home and community agencies, community health services, public health, mental health, addiction services, housing services, and professional and licensing bodies. The issue of organ and tissue donation and distribution affects this broad continuum of care.

Over the last ten years, our association has been involved in a number of specific initiatives related to organ and tissue donation. These are outlined in our brief. CHA members believe that while these individual activities have been important, there is now a need for action on a coordinated national strategy for organ and tissue donation and distribution in Canada.

Larry Odegard will outline the elements that CHA has identified as key to a national strategy. Larry joins me today as the CEO of one of our provincial associations, the British Columbia Health Association. Also, for the record, the last time I checked, Sharon Sholzberg-Gray was actually our CEO with the national association, so I apologize for that mix-up.

In addition to a systems perspective on the issues related to organ and tissue donation and distribution, Larry also brings his previous administrative experience at the University of Alberta Hospital in Edmonton—one of the leading transplant centres in Canada—and with the integrated health authorities in Alberta. Larry also has some experience with the human organ procurement and exchange program, the HOPE program, in Alberta.

Mr. Larry Odegard (Executive Director, Canadian Healthcare Association): Thank you, Kathryn, Mr. Chairman, members and colleagues.

The Canadian Healthcare Association has identified a number of elements that, from our members' perspective, are key to developing and implementing a national strategy. Other initiatives, such as public education and promotion of organ donations, will also be key elements in the national strategy to improve organ and tissue donation distribution in Canada.

The CHA's priority elements include, first of all, a standards-based approach to ensuring the safety of organ and tissue donation and transplantation. The Canadian Healthcare Association supports such a national standards-based approach to ensuring the safety of organ and tissue donation and transplantation and is looking forward to participating in the development of these standards. The CHA urges Health Canada to include public health expertise among the experts and stakeholders consulted in the formation of these standards. This input is necessary in order to address issues of disease transmission.

The second element is an active role by the therapeutic products program—or TPP—Health Canada's regulator in monitoring compliance with national standards through a process that is transparent and retains TPP's ultimate accountability. The Canadian Healthcare Association believes the therapeutic products program of Health Canada must have sufficient resources to ensure that the risk management process for organ and tissue donation distribution meets the highest standards and does not create unnecessary barriers to participation in the national strategy.

• 0955

Third is the implementation of a national registry to record the wishes of potential donors. The CHA urges the Standing Committee on Health to review the merits of various options, some of which you've heard today and earlier, and to propose concrete actions that will enable the quick development and implementation of a national registry, or a comparable effective mechanism, to record the wishes of potential donors. This registry should be national in scope and an integral component of the broader strategy for organ and tissue donation and distribution in Canada. The basis of this national registry might be the same across the country, or the national registry might link or establish a network of different systems developed in each province or territory.

Fourth is the implementation of a national wait registry of individuals waiting for transplants. The Canadian Healthcare Association supports the development of a wait registry that would be updated daily and use clear and consistent ratings for the individual's degree of urgency. The current wait system, which relies on a case-by-case tele-search, would be improved through a real-time tracking system, agreements on decision-making authority, and a national sharing algorithm.

The fifth element, which has been referred to earlier, is education of health care providers. The Canadian Healthcare Association strongly urges the Standing Committee on Health to consider the education of health providers involved in organ and tissue donation distribution and transplantation as an integral component of an overall national strategy. Health care providers must receive training and education in the complexities of this important issue.

The sixth element is sustained and sufficient funding. The CHA believes a national approach to ensuring sustained and sufficient funding for a national organ and tissue donation and distribution strategy must be developed.

Seventh, there must be immediate action on a number of elements in the implementation plan for the national-provincial strategy on organ and tissue donation and distribution in Canada, which is now the responsibility of the national committee on organ and tissue donation and distribution.

We urge the Standing Committee on Health to recommend, at a minimum, action on those elements of the strategy that can stand alone. For example, on national safety standards and a national registry, rather than waiting for consensus on all of the elements, development of an overall national strategy may need to occur incrementally. However, an overall vision of the key components are essential if Canadians are to have access to the needed organ and tissue donations.

Overall, the Canadian Healthcare Association urges the Standing Committee on Health to recommend concrete actions necessary to develop and implement a coordinated national strategy for organ and tissue donation and distribution in Canada. The provincial and territorial members of the CHA are committed to working with others in addressing these issues and implementing a national strategy.

Just to briefly recap, to achieve the aspirations of our colleagues expressed today, we request support for the development of the structure and the process that will achieve national safety standards; ensure compliance monitoring; establish a national donor registry; develop and maintain a national wait registry; provide appropriate education for health professionals; ensure sufficient sustained funding; take immediate action on many of these elements; initiate action to develop a national strategy; and involve us in this process.

We thank you for this opportunity to present, and we look forward to the discussion.

The Chair: Thank you, Mr. Odegard.

• 1000

For our last presenter, I'll go to somebody who's been very patient—like everybody else—Colleen Shelton from the Toronto General Hospital.

Ms. Colleen Shelton (Clinical Nurse Specialist, Toronto General Hospital): Thank you, Mr. Volpe, and thank you again for the opportunity to speak with you on this important issue of organ and tissue donation across Canada.

In my position as the clinical nurse specialist at Toronto Hospital in the multi-organ transplant program, I'm in a unique position and environment to contribute to all phases of the transplant process, from assessing candidates, consulting on patients in the in-patient and ambulatory care areas, where we follow over 2,000 such patients, to the organ donor team.

The Chair: Excuse me. I know you want to get everything in, but our translators are having a difficult time following you. Perhaps you could just slow down a little.

Ms. Colleen Shelton: Sure.

In addition to my position at Toronto Hospital, I am also a certified critical care nurse with over ten years' experience. I care for critical care patients in another facility, where I periodically care for organ donors and their families.

When I think about the situation in Canada around organ donation, I am left to distill all our concerns into one essential issue: altruistic goodwill. The current system in Canada is completely dependent on goodwill, and every person in the chain of the process must have that goodwill in order to go on to secure organ donation from a potential patient.

The health care professionals in ICU need to have the goodwill to consider the plight of another patient; an unknown patient who's waiting for transplantation. They need to have the goodwill to contact the retrieval agency and approach the family at a time of grief to ask them to consider another.

The family needs to have the goodwill to choose to give up the organs of their loved one in order to save another's life, someone who is completely unknown to them. I'm here to tell you that goodwill is simply no longer enough.

I believe four key strategies need to happen. I don't have the answers for how to implement them all, but I have some suggestions. You may know that the state of Arkansas recently repealed their bike helmet law for motorcycle riders. That's extreme. I'm not going to recommend that for Canada. They did it because of public pressure, although I suspect they'll have an increase in organ donor rates—they'll look forward to that. But Canada needs a required request or a required referral process, trained and designated requesters, fair remuneration for hospitals, and a public awareness campaign.

At present, in an ICU environment, many families aren't even offered the choice to consider organ and tissue donation. The choice is essentially made for them because the health care providers simply choose not to ask. I believe most of that is because they're uncomfortable approaching families at a very emotional and difficult time, and I appreciate that. In my practice, before experience in transplant, I participated in these discussions and it was very difficult.

I didn't have all the answers. Patients and their families had very detailed questions about the process. What happens? How does the donor get cared for? I didn't have the answers that time, and I'm sure our consent rate at that time was not very good.

Since receiving training and participating in other organ donation requests, it has been very different. When I work in a critical care environment and speak with families, I have the answers for them. My training has taught me I'm not there to coerce anybody; I'm there to give them their opportunity, present them with information, and let them make the choice that's right for them. Organ donation is not right for every family, but people need to have the right to choose, and we don't always give them that.

So I believe we need trained and dedicated requesters who can intervene in this decoupled approach, as Mr. Nathan has talked about, which is certainly used around the world in transplant programs that are very successful.

The second issue is that of required referral. I believe, as Mr. Nathan's model is suggesting, we need a system in Canada that requires referral for every death, every incidence of brain death, to ensure that the proper decision is made as to the potential donation ability of the patient who is brain dead.

I also think we need fair remuneration for hospitals. There are costs to organ donation. In the presentation notes I believe you'll receive later, I've outlined these costs in a table for you. When a donor is identified, it means an additional six to ten hours in ICU, six to ten hours that another patient cannot be in ICU receiving care. Those are costs borne by the hospital. The donor then requires four to six hours of surgery in the operating room. That cost also needs to be included in any remuneration strategy.

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When I break it all down—and we have done some analysis of the situation in our province—the costs for an organ donor in ICU and the OR are about $6,000 to $7,000 per donor. That's to have the nursing staff available, the medical staff available, the resources, equipment, medication, all at our beck and call to be able to perform this important service.

For hospitals that are regional, neuro, or trauma centres, who may have ten to twenty donors a year, that's a big cost when you multiply it out, and for centres that may only see one or two donors a year because they're very small, it's still a chunk of their budget. I'm sure you'll agree with me that over the last five years our hospitals have had excruciating cuts to their budgets. It's simply not fair to ask them to somehow have the goodwill to absorb these costs in their budget when we're being asked to cut back on photocopying. How do you have $7,000... find it somewhere else, comprise somebody else's care, so that we can absorb the cost of organ donations somehow? It has to get better. It has to be fair reimbursement for fair cost to help provide this. I don't think the costs are unreasonable.

The last issue I'll bring up, and it has certainly been brought up by many of my colleagues here on this panel this morning, is that of public awareness. When we speak with families, my experience has been that families either are very pro donation or they're completely against it. These people have perhaps had some discussion around the dinner table or some news item or whatever has brought it to their attention and they've made the decision as a family, or they understand what each other's wishes are. We need a campaign, a federal campaign, hopefully, that will bring this issue to light with families in homes across the country, that will let people talk about what their wishes are so that when we have to have this conversation, the family can feel comfortable that they are proceeding in the interests of the patient and have their best wishes enacted as they would wish.

Those are my recommendations. The current system is in need of change, and I think we have to capitalize on our goodwill as Canadians and build a stronger foundation to support the efforts towards organ donation for the health of our nation.

Thank you very much.

The Chair: Thank you, Colleen Shelton.

I'll go to questions now from our colleagues on both sides. For those of you who are unfamiliar with the system, the members of Parliament sitting to my left are members of the opposition parties and those sitting to my right are members of the government side. We don't typically operate on a partisan fashion here, but I just thought I'd give you that little bit of information. The opposition always has an opportunity to ask the questions first, so I'll go directly to Mr. Martin.

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

Thank you all very much for coming here today. This is probably, in my view, one of the best sessions we've had so far in terms of articulating constructive solutions that we can employ here for the people of our country.

Thank you also for articulating that organ donation is safe, it's not experimental, and it is the only hope of life for many patients who need it.

Dr. Shemie, you did a very good job of articulating the issue of brain death, that somebody who is brain dead is indeed dead. Could you give to our committee chairman or clerk the criteria for brain death that you use at Sick Kids? That would be appreciated, if you don't mind doing that.

Mr. Nathan, thanks for coming all the way from the U.S. Spain has a high rate, and we have heard much about it today. Your rate is significantly higher than Spain's. Could you tell us why Spain's model may not be the best model for Canada and what you've done that is better than theirs?

I have two final points. I wonder, Dr. Crelinsten and Dr. Guzman, if the CMA would consider having a program where physicians would have a package of organ donor response sheets or documents, that each patient in this country could have one of those forms on their charts—consider that as a program, if you like.

Ms. Shelton, thanks again for articulating the cost involved in organ donation and also the fact that while it may cost $7,000 to have that person donate organs, it will save the taxpayer $200,000 every four or five years. So I'll leave that for you.

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The Chair: Thank you, Mr. Martin. I'm going to have to be a little bit more rigorous on the time and the responses.

Mr. Nathan, I think you were first.

Mr. Howard Nathan: Dr. Martin, the Spanish model utilizes physicians who are employed by the Spanish health care system who are typically intensive care unit physicians. Part of their salary is paid to work as transplant coordinators in hospitals. In essence, they're playing a dual role, taking care of patients on one hand and then, secondarily, identifying donors. Actually, part of their salary is required to do that.

The reason I don't think of the work in North America is because I think in Spain the health care system is different. Number one, physicians over there are certainly revered, and the population is much more homogeneous. Whether we like it or not, there is a little bit more skepticism here in North America about relationships between patients and physicians. Often these patients are coming in as trauma patients. They don't have a relationship with the physician. They just met them an hour or two ago. To have that dual role of not only taking care of a patient and then turning the other corner and becoming the donor coordinator can sometimes be a little bit threatening to the families.

I think what we've proposed is making infrastructure changes such that the donor programs are separate from the hospitals but in a cooperative effort with the attending physician groups. So there is a specialist whose sole job is to educate doctors and nurses in hospitals and to also be available to talk to families on a moment's basis, if you will, to bring up donation in what we call a decoupled approach. The team caring for the patient takes care of the patient and makes every effort to save them, and unfortunately has to explain what brain death is, in a sensitive way. Then an expert is brought in as part of the team at a later point to bring up the request of donation in a separate conversation. We think that's a better model. We don't think the other system can work. We think it also perhaps may be more expensive, but I don't have data on that.

The Chair: Mr. Nathan, I want to assure you that the doctors we have on this committee are held in God-like reverence by the other committee members.

Speaking of doctors, Dr. Crelinsten.

Dr. Gordon Crelinsten: I think Dr. Martin has made a very important point. I think the relationship between doctors and patients at times is a very intimate relationship, and there is no better place to initiate the kinds of discussions that are necessary to improve the awareness of the importance of being a donor than during those very careful interactions between doctors and their patients. The emphasis, as many have mentioned, should be placed upstream in the relationship between patients and their physicians so that the awareness of individual patients to the importance of becoming donors is allowed for individual patients to consider and to make informed choices regarding that particular importance.

As physicians have already taken the time to discuss public health issues with their patients, whether it be the risks of smoking or the risks of drinking and driving, physicians across the country would be encouraged to engage their patients in discussions regarding the importance of organ donation. Of course, these particular instances would be recorded in their charts. Who would be a better advocate for the wishes of the patients at difficult times than the physician who really knows the narrative of their life and the expression of their wishes at a time when they're not faced with the emotion of either death or dying?

As others have mentioned here, the ultimate reward of the altruistic gift of giving an organ resides in the individual, not in the family. Even though it's important for the family to understand the wishes of an individual, the family ought not to be the primary recipient of the reward of altruism in donating their loved one's organs, but should be reflecting the wishes of their loved one, if in fact their loved one were able to make that decision. Who better to help individuals and families understand those decisions and to be aware of the importance of those decisions than their physician, in the intimate relationship that is involved between a doctor and a patient?

The Chair: Dr. Crelinsten, thank you.

Ms. Shelton, last comment.

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Ms. Colleen Shelton: To add to what my previous colleague just mentioned, it is important that in that patient-physician relationship in the critical care environment there is the trust to help facilitate this kind of donation conversation, but I would caution you that our studies and studies across North America show that part of the process that assists this conversation is that the person is dedicated to the ideal of organ donation and has training and experience in the process.

We know when staff physicians in hospitals approach families about organ donation... .and these are women and men who have experience. You know who I'm talking about; they're people who have good rapport, a good sense of trust with the patient, and a manner that facilitates the conversation process. They are able to speak with families well, and we see a good, what we call, conversion, where you approach a family and the family consents to organ donation.

When we have organ donor coordinators or specialists request organ donation from families—and these again are people with lots of experience and proper training in the process—they also have very high conversation rates. Families understand the issues. They have the time to support the families through the grieving process, and this is so important to help the families make a good and right decision for themselves.

However, I would caution you that if you just say any physician or any health care provider in ICU, that may not be enough. We know that when people who perhaps are still completing training or only spending part of their practice in an intensive care environment approach families, they have a very poor rate of conversion. Again, a lot of it is inexperience and not having familiarity speaking with families about such difficult and emotional issues. So the people need to be committed and experienced and, ideally, trained.

With regard to the issue of the cost of organ donation, we know patients in organ donor failure expend or take up a disproportionate number of health care dollars to support them while they are in heart failure, respiratory failure, and kidney failure. The current cost, for instance, for hemodialysis, is put at somewhere between $25,000 and $35,000 a year.

Transplant surgery is expensive, and I won't deny that, but to give somebody a kidney transplant and then support them in the ambulatory care setting afterwards... their costs are significantly less. We're seeing that it's only between $2,000 to $5,000 a year in the care to support post-transplant recipients versus all the amount of resources and equipment and dollars we put into the pre-transplant organ failure survival for these patients. So these are important factors to consider, but again, we can't ignore that a hospital maintaining a donor has its own cost inherent in the process.

The Chair: Thank you, Ms. Shelton.

Before I go to the next questioner, I want to give Dr. Shemie a moment or two to respond as well.

Dr. Sam Shemie: Thank you for your comments, Mr. Martin.

The issue of brain death in children is similar to that in adults. Let me reiterate the definition. It is the complete and irreversible cessation of brain function. That means these patients are unconscious, they cannot think, they cannot feel, they cannot move, they cannot see, and they cannot breathe, and those functions will not recover.

There has been previous testimony in this committee meeting that somebody was previously diagnosed with brain death and yet is now alive and functioning. That cannot be true. The use of the term “brain death” is being used inappropriately or that person is misinformed.

For children, there are important things that you must include and exclude in the diagnosis of brain death. One, there must be an explicable cause accounting for that person's situation that has caused the brain death. If you do not have an explicable cause, you cannot diagnose brain death. The example would be somebody coming in with a traumatic head injury, who is comatose and brain dead. That is an explicable cause. For somebody presenting to an emergency room with coma of uncertain ideology who is brain dead, there needs to be an explicable reason for that situation.

The patient has to be at normal temperature, and there are strict clinical guidelines for the examination to confirm brain death. That examination has to be done, again, at two different points in time by two different physicians, and that includes clinical testing of the absence of consciousness, the absence of lower brain function responsible for breathing and reflexes of what we call cranial nerves, and again, a strict test for the absence of breathing under conditions of elevated carbon dioxide in the blood, which is the stimulator for breathing.

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So it's the complete and irreversible absence of brain function, both higher-brain cortical function and lower-brain brain-stem function, and those patients do not recover.

The Chair: Thank you, Dr. Shemie.

I'll go to Madam Wasylycia-Leis.

Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP): Thank you, Mr. Chairperson. I have a couple of questions each for the CMA and CHA representatives.

First to Dr. Crelinsten, you talked in your paper about xenotransplantation, which has been a fairly major issue before this committee, and we've learned that there is a very high level of research going on in this country. While we may have a low rate of donors, comparatively speaking, we seem to have a very high level of research into the use of animal organs. But we also learned that there are no guidelines in this country. There are no criteria around how and when and why this research should be going on, and contrary to what is happening in Europe, we are going sort of full bore on the whole thing as opposed to slowing things down to make sure we've put it in the proper ethical context and allow for public debate.

What would be your advice with respect to a role for government or the community at large to ensure that we proceed cautiously and on solid ethical ground?

Dr. Gordon Crelinsten: Thank you for that question.

Xenotransplantation, as you are aware, is a relatively new technology that, as you point out, is burgeoning and becoming quite active in research areas.

The Canadian Medical Association does have affiliated organizations that are intimately involved in xenotransplantation issues, whether they be specialty societies who are particularly interested in this area and other research areas, which are actively investigating important guidelines for the activity of xenotransplantation.

The CMA itself is presently reviewing the report of the National Forum on Xenotransplantation on the clinical, ethical, and regulatory issues, which has been deposited, and we are in the process of studying that to make recommendations to the ethics committee.

Our ethics committee meets regularly and is made up of members from across Canada who can bring points of view in a national perspective, discuss these issues from a national point of view, and attempt to reach national consensus. The important issue is that these members are able to bring back these particular issues and ideas to their regions and to their societies to help make individuals across Canada aware of the tremendous importance of the issues you bring up.

Ms. Judy Wasylycia-Leis: Would you support a moratorium in this country until we can sort out some of the issues around xenotransplantation?

Dr. Gordon Crelinsten: As an organization, the Canadian Medical Association has not addressed that particular issue. From an individual point of view, speaking as a physician involved in medicine and taking care of patients, I think a blanket moratorium is often not a good idea. I think important discussion about all of the issues, whether they be clinical, ethical, or regulatory, needs to take place in a very cooperative national forum.

Ms. Judy Wasylycia-Leis: How much time do I have on this round?

The Chair: You have one minute.

Ms. Judy Wasylycia-Leis: Let me come back later. I assume I'll get another round, hopefully.

Let me then just ask Dr. Crelinsten one other question pertaining to his notes about physician involvement in educating and informing the public around the merits of donating organs.

In all of my lifetime I've never been asked or had this topic addressed by a physician when I've gone for a physical or for any kind of medical advice. Do you see the day when doctors are fully educated around this whole system to the point where physicians in their offices could initiate discussions with patients about the merits of organ donation?

Dr. Gordon Crelinsten: I think physicians play a critical role in educating patients about all kinds of health care matters that impact on their health and the health of society. When I was chairman of the ethics committee of the Royal College of Physicians and Surgeons of Canada, which you will hear from later this afternoon, we initiated the importance of making sure that the teaching of ethics and the evaluation of its learning was an important and integral part of all training programs of specialists in Canada. In fact, those ethics modules have modules that are involved specifically with the questions of transplantation.

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Secondly, there's an increased incidence and increased importance of the development of communication skills in all of the 16 medical schools of Canada. So I think the medical schools have recognized the importance of communication between physicians and patients and patients' families and have taken the initiative to make sure student physicians are well schooled in communication skills and can become the kinds of good converters that Ms. Shelton has pointed out.

The Canadian Medical Association, through numerous educational initiatives such as the Canadian Medical Association Journal and professional development programs, has increasingly spent time talking about transplantation and its importance.

The Chair: Thank you, Dr. Crelinsten. I don't mean to be sarcastic about this, but does your response reflect the fact that until recently there wasn't that focus on ethics and communications that there would be now?

Dr. Gordon Crelinsten: Medical schools have always had an important part of their curriculum involved with ethical decision-making and communication skills. It has become known that there can be an initiative to improve the teaching of ethics, the teaching of communication skills, the teaching of surgery, or the teaching of diagnosis and treatment in other areas. I think medical schools and training programs have been very forward thinking in taking advantage of new ways of developing teaching and the evaluation of learning and certification of these particular skills.

The Chair: Thank you, Dr. Crelinsten.

Madam Caplan.

Ms. Elinor Caplan (Thornhill, Lib.): Thank you very much.

I too appreciate the excellence of the presentations this morning.

I have a number of questions. The first has to do with the jurisdictional issues. We know, and it has been referred to by a number of people, that the provinces have an important role to play. They fund the hospitals, they decide which hospitals will deliver which programs, and they decide the funding level of those budgets.

We had representation from British Columbia that they have a transplant agency that actually holds all the funds for the transplantation program and reimburses the hospitals. Perhaps if you wanted to give us your views, I'd be interested in knowing if you feel that works and that's better than giving the hospitals the total budget for the transplantation programs. The hospitals that do not have transplantation programs want to be encouraged to identify donors as well, and I believe that was the rationale for that method of funding.

I don't think, Ms. Shelton, you're referring to going back to advising the provinces to do program funding or line-by-line funding, but I do find it interesting that you feel transplant programming and the identification of transplant donors should be dealt with outside of the hospitals' ability to set priorities and to manage.

I wonder, and this is a question for everybody, what level of accountability you feel there should be in the reporting of identification of donors, conversion, and that sort of thing in the program. I wanted Mr. Nathan to comment on the accountability mechanisms in the Pennsylvania program.

I have questions for the CMA with regard to two issues. Firstly, I wasn't sure from your presentation if you were suggesting that families should not be able to override the wishes of an individual. Secondly, when you talked about privacy, do you have a concern about anyone who either joins a registry or is on a national waiting list? I wasn't sure what the concern was for patient privacy in the context of your presentation. I'd like you to clarify that as well.

The Chair: We don't have a lot of time for that. Let me just go in quick order, then. Mr. Nathan, on the question of accountability, you probably have built that in already and the costs associated with it.

Mr. Howard Nathan: Yes. In the United States the Health Care Finance Administration, or medicare, certifies each donor program. In fact, the original funding came outside of any type of budgetary thing. The OPOs, the organ procurement organizations, were cost reimbursed. It means that for any cost they incurred at a hospital, they would reimburse the hospital and they in turn were reimbursed for the cost of recovering the donor. In your system, in essence it would be outside of the hospital's budget.

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With regard to accountability, at the federal level there are performance standards for each of the 62 donor programs, and the state also monitors what's going on with the hospitals to make sure they're complying with the law.

Ms. Elinor Caplan: Is that data publicly available?

Mr. Howard Nathan: Absolutely.

The Chair: Mr. Odegard.

Mr. Larry Odegard: Thank you very much, Ms. Caplan, for the question. I just want to comment on the strengths of the B.C. program, which you heard of last week, and there certainly are strengths there. I have also worked in Alberta, where there is a much different approach. The important thing is that we should build on the respective strengths. There is no particularly right way of doing it. The challenge here is that we need new money for these new programs. We have heard a great deal of debate and discussion about health care expense. I'd urge the committee to think more about investment in life rather than health care expense, because really that is the issue here.

If I could comment as well on the accountability issue, that certainly is one of the real advantages of the B.C. program. In having the centralized coordination of those services, there is a greater capacity for accountability measurement and reporting.

The Chair: Ms. Shelton.

Ms. Colleen Shelton: With regard to accountability, I'm in complete agreement. At a federal level there need to be some penalties or some enforcement associated with making sure you identify the donors, and there has to be some incentive in the program.

With regard to the funding issue, in hospitals right now, whether you're a transplant centre or not, and most are not, if you identify a donor, there are costs associated with it, but those costs aren't built into your budget at the beginning of the year. You're basically forming your budget on what you think your regular patient load will be, and nobody is building in that extra cushion to support the donor cost. It's simply not possible, given the levels we're seeing certainly in this province. In Ontario we know that our nursing staff levels are far below the national average. We have barely enough to care for the patients, let alone invest in the rest.

Ms. Elinor Caplan: Are you saying that the transplant program doesn't identify how many transplants they're going to be doing in a year?

Ms. Colleen Shelton: Each year we have an idea of how many transplants we will be doing, and we receive appropriate funding for that transplantation and the follow-up care for the recipient as well as for the assessment. We don't get money for the donor. We have money to support organ donation insofar as we have organ donor coordinators that go out and assist the hospitals with the process. But we can't reimburse the hospital at the other end of the equation for the nursing staff to care for the donor and for the equipment and resources that institution will use in the care they provide to that donor. Those are the expenses that need to be covered somehow or else built into the budget and designated for this purpose alone.

The Chair: Thank you.

I'll now turn to Dr. Shemie on that same question.

I'm going to ask Dr. Crelinsten to reply afterwards. I'll give you an opportunity later to respond to that other concern.

Dr. Sam Shemie: I would just like to clarify an issue; that is that there is a very strict distinction between the transplant program and the organ donation process. The transplant programs run independently, certainly in our hospital. The organ donation issue is relegated to the intensive care practitioners, nurses and physicians. It is an additional burden to the current practice right now in terms of when you have a child who is potentially brain dead, the amount of time it takes to counsel families and to manage that patient and to get them to the point where they can be true transplant donors is enormous. Our data reflect the fact that unless you have somebody who is devoted to that position, who sees it as their responsibility, the details of that care get omitted, and that translates very clearly into a reduction in transplantable organs.

The Chair: Thank you.

Mr. Grewal.

Mr. Gurmant Grewal (Surrey Central, Ref.): Thank you, Mr. Chairman.

I join my colleagues in welcoming the witnesses to the committee. As well, I'd like to thank all of them for their excellent presentations.

I have two quick questions. Mr. Nathan mentioned that in Pennsylvania there are about three million registered donors, and I guess the population is about eight million. In British Columbia, where I'm from, the population is six million, and the number of registered donors is 180,000. So you have more than double the number of registered donors per million.

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In British Columbia, there is an organization called the British Columbia Transplant Society. They have been operating there since 1986, and I believe British Columbia is much more advanced than many other provinces in Canada in organ donation, as they claim. Their budget is something like $28 million. So I would like to find out from you how you can do in your state something we can't do in our province, and how much the cost is, in terms of millions per year, roughly.

My second question, Mr. Chair, is that after listening to all the witnesses over a few days, I found out that the most important element to make organ donation programs successful is public education and public awareness. I wonder, do we have a national organ donors day? Would it be a good idea to have a national organ donors day whereby we can educate, make the public aware, and promote organ donation in the general population?

So these are the two questions, Mr. Chair.

The Chair: Mr. Nathan.

Mr. Howard Nathan: Thank you for the question. Because it's part of the driver's licence program, the initial set-up to change the computer that generates a driver's licence was about $300,000, and basically that's the entire cost of the entire program forever, except for the public education component, which we're going to do later on.

Mr. Gurmant Grewal: Is that cost per year?

Mr. Howard Nathan: No. It was one time, in 1995. The reason it's different in B.C. is that in Pennsylvania, you literally stand there, you get your picture taken and stand in front of a computer and make a choice. With B.C.'s transplant program, they give you a brochure, you take it home, discuss it, and you may or may not send it back to British Columbia Transplant. The idea is basically for people to make an informed decision, and they have an opportunity every four years, if you will, because we renew our driver's licences every four years.

So that's the difference, I think. It's because it's part of public awareness on a routine basis, so that people are asked that question when they show up. They also do voting the same way in the United States. When you register to vote you can do it when you renew your driver's licence in the same way—you push a button.

The Chair: I'm sorry. Mr. Grewal asked a question about what the start-up costs were.

Mr. Howard Nathan: They were $300,000.

The Chair: That's U.S., that's about $450,000 Canadian. But what's the maintenance cost?

Mr. Howard Nathan: None.

The Chair: None whatsoever?

Mr. Howard Nathan: None, because what happens is that the people at the driver's licence centres who are giving out a driver's licence are there anyway. It's part of the system already. The only thing we had to change was the one field for whether you wanted to put organ donation on your driver's licence. That's the total cost. So there are no ongoing costs at all to the donor program, because it's part of the routine of getting your driver's licence renewed.

The Chair: What about the access costs?

Mr. Howard Nathan: The state police and the Department of Transportation have a 24-hour hotline. Actually, it's used for law enforcement. We basically call them whenever we have a potential donor, and they give us the information over the phone. They can also fax it. Again, those people are there anyway. It doesn't burden them because it doesn't happen that often in a day—it might happen 10 times a day at most. So the amount of work that's involved is in some respects inherent in the system that already exists.

The Chair: Mr. Grewal had a second question. Did you want to address that one, about public education?

Mr. Howard Nathan: Yes, I think that's a great idea. In the United States we have what's called organ donor awareness week, and I think in Canada you have the same. Ours is in the third week of April. I'm sure the Kidney Foundation or whatever does it here.

The Chair: Dr. Hébert.

Dr. Diane Hébert: There is an organ donation week in Canada. It is the third week of April also, and it has been going on for many years. It may need to be more publicized to really serve as a better public education forum for the public. But that week has been designated as organ donation awareness week.

The Chair: Dr. Crelinsten.

Dr. Gordon Crelinsten: Did you wish me to respond to Ms. Caplan's questions?

The Chair: If you want, you can pick up on Mr. Grewal's second question, then you can piggy-back on to that and respond to Ms. Caplan.

Dr. Gordon Crelinsten: I agree that public awareness and public participation through an organ donors day or week is important. I think Canada, as has been pointed out, has that week and it needs to be promoted to a greater degree.

I would like to address Ms. Caplan's questions, and maybe take the privacy one first.

The Chair: Dr. Crelinsten, one second. I think it's still in Mr. Grewal's time and he had a supplementary for you.

Dr. Gordon Crelinsten: Okay.

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Mr. Gurmant Grewal: Just for the sake of clarification, how much are we able to achieve with the organ donation week we have? Is it a national week? Are we doing enough in all provinces? Is it an integrated effort?

Dr. Gordon Crelinsten: I may not be the appropriate person to answer this question in that the Canadian Medical Association, although it probably recognizes the fact that there is a national donor week, does not have the statistics as to why it's not better promoted and better understood.

The Chair: I'll take a brief comment from Ms. Shelton and Dr. Shemie.

Ms. Colleen Shelton: The centres that have transplant programs usually run a lot of local activities around organ donation awareness week, again, in the third week in April, and have done so for many years. The difficulty is there's no national agency charged with promoting organ donation issues during that week so the activities are very local, they're very small in scope, and they don't address the grander scale that needs to be approached in this country.

The Chair: Dr. Shemie.

Dr. Sam Shemie: I'd like to reiterate Colleen's statement. How many people around this room have ever heard of organ donation awareness week? I suspect there were very few prior to this committee. It reflects the fact that it's done at a local, regional level without a national voice.

The Chair: Dr. Crelinsten, I interrupted you, but if you feel you can be brief, you can respond to Ms. Caplan.

Dr. Gordon Crelinsten: I'll address the privacy issue first. Health care decisions that individuals make are private decisions. I think Canada and Canadians respect the value of personal choice and respect for autonomy regarding all health care decisions, which are something that individuals make and do not necessarily, unless they themselves wish to, share with others. So any means of procurement of organs that impinges on the ability of individuals to make private individual choices that are voluntary and not coercive would be contrary to what Canadians believe in general.

Ms. Elinor Caplan: I understand the non-coercive. I'm not sure I understand the privacy concern.

The Chair: Do you want to address that, Mr. Nathan, on the privacy access?

Mr. Howard Nathan: I think we concur with Dr. Crelinsten. I think the issue is basically making sure that the people have the opportunity to make the decision, as Ms. Shelton talked about, not only in the driver's licence situation, but even in those crisis situations, because many people still don't talk to their family and haven't made a decision. So it has to be brought up at that time, unfortunately, in a sensitive way by trained professionals.

The Chair: Ms. Tregunna.

Ms. Kathryn Tregunna: I actually want to go back to the issue of drivers' licences.

The Chair: I just asked him about the privacy safeguards on drivers' licences. Go ahead.

Ms. Kathryn Tregunna: It's not directly related to privacy. I want to let people know that in Nova Scotia our member informed us that they will be phasing out the driver's licence approach and they're moving towards recording the donor wishes on the health card, for a number of reasons, including the one that more people would be registered in that way. With the driver's licence you have to make an instant decision, and if later you decide that after talking with your family you would like to become a donor, you have to pay to get your driver's licence changed.

So in our brief we very clearly say that the national registry may not be identical in every province, but would link whatever system has been successful in each province.

The Chair: I wonder if you would address for us the issue of what happens if both in the driver's licence situation and in the health card situation a potential donor changes his or her mind a month, a week, a year after that first decision. Have you got that in your system?

Mr. Howard Nathan: Absolutely. They can go back and get a driver's licence reissued at least, I think, once or twice for free. So if they change their mind, they literally have to go back physically and get it reissued.

The Chair: What would happen under that health card mode?

Ms. Kathryn Tregunna: In the Nova Scotia model there would be a disincentive to have your driver's licence changed because the individual would be charged, whereas for the health card, every time you go to your physician or hospital facility they check that your address is correct, and there could also be a time at that moment to change a wish.

The Chair: Ms. Minna.

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Ms. Maria Minna (Beaches—East York, Lib.): Thank you, Mr. Chairman. I have a few questions for Mr. Nathan and then for the CMA and CHA I think together.

First, for the driver's licence people, there's been a great deal of talk about whether or not the indication of the patient is final or if the family has the right to override if they chose to say no. I wasn't quite clear whether it's final or not in your system.

The other question is on the reimbursement of a portion of the funeral costs, which you said is a pilot project. I was trying to understand why that would be the case for incentives. There are some ethical issues. We've talked about incentives before, and there were some reactions to that around this table. In terms of the hospitals having to refer all that, I'm not sure whether you said there was a penalty if they did not, but if there is a penalty, what would it be and how is it applied?

The last one for you has to do with the area that all hospitals now in the U.S. have to refer. Is there a national coordinating body in addition to your state organizations, and what is its function? I'm not too clear whether there is or not.

My final question, Mr. Chairman, is to the CMA and the CHA. We have had a great many presenters from various hospitals and associations within Canada, and different provinces that have some really good programs—the Hospital for Sick Children has some, B.C. has some, Alberta has some, Nova Scotia has different ones. I guess my question is, has there been any discussion between the two associations to discuss how you might propose, or lobby, or ask for a national structure? Has there been any attempt to look at standards within each organization or together? We know there isn't a coordination of any kind, but given that you're two national bodies, have you at any time attempted to try to come up with some coordination or suggestion or attempt at national standards or what have you? I see that as very much your role, I would think. I wondered about this, and if so where is it at, at the moment?

The Chair: Do you want to go first, Dr. Crelinsten?

Dr. Gordon Crelinsten: National standards and guidelines often reflect the state of practice, and I think the Canadian Medical Association itself is not in the business of establishing guidelines but rather acts as a repository for those guidelines that do exist across Canada from its various affiliated organizations and provincial members. Those guidelines are available to all members of the Canadian Medical Association, and at least when our ethics committee meets there is an availability for opinions from across Canada to be expressed at a table such as this so that national consensus of these issues can be achieved and be brought back to the various regions and localities for discussion and implementation.

The Chair: Mr. Odegard.

Mr. Larry Odegard: Thank you for the question. I think there has for years been an informal network of connections between the respective transplant centres and specialists, and although there haven't been formal relationships on this particular issue—we have been distracted by other health issues over the last few years—we would be very willing at both the provincial and the national levels to engage in that discussion and to jointly work at developing standards approaches and guidelines and assist Health Canada in that process.

The Chair: Ms. Tregunna.

Ms. Kathryn Tregunna: If I could add to that comment, it's been indicated to us from our members that we really don't want to reinvent the wheel. There has been a lot of work done by the national provincial strategy, and I believe element seven and others address some of the discussions we're having here today. So we should build on that and move forward with concrete action. So certainly CMA and CHA would be partners with a number of other organizations, provincial, territorial, and federal governments to move into action.

The Chair: Ms. Minna.

Ms. Maria Minna: I'm sorry, Mr. Chairman, I think I would like to hear from Dr. Nathan, if I could.

The Chair: Sure.

Dr. Howard Nathan: On the issue of the driver's licence, it is a final decision. By law it is a final decision. It is a legal document, as is a living will or a donor card. In practice, however, I can tell you that the donor programs still present that information and want to proceed, but if there is violent opposition and no consent from the family, we will not proceed.

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I think Ms. Shelton said this whole system is still based on public trust and goodwill. If we were to violate that, even if we had the legal right, there would be a lot of outcry and the donation program would fall apart. So at this point in time we don't formally act on it. At some point in time we may, particularly in instances where no family member is available.

In terms of the incentives, this is a very controversial issue. This has been debated in transplantation for the past 10 years. A legislator put this forth. It almost went out without any debate. It went through the law, and we have it. It has taken four and a half years to write the policies with some ethicists, and it will be implemented this summer. It basically will give a voluntary benefit to families who donate organs, in the amount of about $200 to $300. It's 10% of the total fund that's available. The idea is to see if this in some way gives some families some incentive. Many families it may not influence at all, but there may be some families who haven't discussed it and it may help them to make that decision.

So we're going to study it for a period of three years on all patients who donate and all families who are asked and who do not donate, and we have two ethicists from the University of Pennsylvania and the University of Pittsburgh who are going to study these families and the health care professionals involved to determine if it makes a difference.

On the penalty to hospitals... I'm going through her list.

The Chair: We've become very familiar with the penalties to hospitals. But today you've struck a gold mine, because the chair is really patient.

Mr. Howard Nathan: I appreciate your patience.

On the penalty to hospitals, again, by law, for each case of a patient not being referred—and this is all people who die, not just brain-dead patients, which is about 100,000 people in the state and 2.2 million people in the U.S.—in Pennsylvania there was a $500 fine per occurrence, potentially. It has never been levied by the Department of Health, but what it did, though, is when we set up policies and procedures, it caught the attention of hospital CEOs and administrators to take this law seriously and to set up appropriate programs and teaching mechanisms in hospitals to make sure the system worked appropriately.

On national bodies, I think you are going to hear from someone next week from the United Network for Organ Sharing, which is the national body in the United States that governs organ procurement and transplantation. It basically certifies every transplant centre, every organ procurement organization in the country. The other part it does is basically set the allocation systems for each organ to be distributed. You'll hear about that next week.

There are two other national organizations. One is called the Coalition on Donation, which is a non-profit organization formed of all the transplant groups in the country and constituents to do national public education campaigns, like the Michael Jordan campaign. So there's a single unified message getting to the national public through public service; everybody uses the same message. In the past, everybody created their own message. It was expensive and people didn't hear about it. Now we have one message.

Last but not least, the financial arm of our government, Health Care Finance Administration, governs the performance of organ procurement organizations and monitors their finances on an annual basis to make sure their costs reflect appropriate expenditures for organ procurement.

The Chair: Thank you, Mr. Nathan.

Before I go to Mr. Vellacott, I'll take a brief comment from Mr. Odegard.

Mr. Larry Odegard: As a comment with regard to Mr. Nathan's remarks, I would urge the committee to hold in reserve the penalty option until we have exhausted all other alternatives in public education, training development, and other opportunities to collaborate.

The Chair: I'm sure the committee will listen to your advice. I'd heard of a penalty option that was ten times that amount and to double every time there was an infraction. So he's really a moderate voice in that regard, Mr. Odegard.

Mr. Larry Odegard: Is this an opportunity to open the health funding debate?

The Chair: I think we already did, about three or four weeks ago.

Mr. Vellacott.

Mr. Maurice Vellacott (Wanuskewin, Ref.): With respect to the comment Dr. Shemie made earlier here with regard to this individual being misinformed—and I think it was another particular term that was used there—the individual who made the comment was a medical doctor, a psychiatrist, and in fact, I guess, had the psychiatry specialty after that particular event. The other individual was a practitioner who actually has to declare death in a trauma or emergency ward in a Vancouver hospital.

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So I guess my question, in part to Dr. Shemie, but to Howard as well, is this whole issue of this uniformity across the world—and Dr. Crelinsten might want to respond as well. My understanding is that there's not a uniformity of definition for brain death across the world. Even within our own country, it was said that you first go through certain basic tests, and then if you require more sophisticated equipment... And I take it that in remote outposts or settings up here, which are not the U of T or big urban teaching hospitals, you don't have that sophisticated equipment. So we don't necessarily within our own country have all in the way of equipment to do this extension, if you will, if there's any question or doubt about it. Do you know if your definition of brain death conforms to exactly what we have in Canada with the CMA, or around the world for that matter?

Mr. Howard Nathan: You know, brain death is really a clinical diagnosis by a physician. There are criteria that are set up. But I think actually our standard, if you will, is based on the literature, because it's the medical literature that expounds what brain death is. I think the level of expertise in diagnosing brain death is what you're talking about, and I think the two physicians can address that. The clinical test is the most important—the examination of the patient. The confirmatory tests—the EEG, the brain wave studies, or the blood flow to the brain—are not required by these studies. It's only if the physician determines he or she wants it. The most important part is the clinical examinations—usually two exams several hours apart. In this country it sounds like two physicians have to do that.

Mr. Maurice Vellacott: So in the United States then, across all the states of the union, you've got kind of a... your medical association laid out that these are the basics.

Mr. Howard Nathan: Typically, they're hospital protocols that are set up. Hospitals take what's in the literature, and they have an ethics committee or a committee set up in the hospital that looks at the literature and sets up a standard of practice for that institution. In general, different hospitals can practise in different ways. That's up to the physicians in that hospital. The ultimate decision of death is made by a physician.

Mr. Maurice Vellacott: Okay.

Dr. Crelinsten.

Dr. Gordon Crelinsten: The Canadian Medical Association, as pointed out, has affiliate organizations. Recently, a committee called the Canadian Neuro-Critical Care Group, which is made up of members of our affiliated societies—the Canadian Neurological Society, the Canadian Neurosurgical Society, the Canadian Association of Child Neurology, and the Canadian Society of Clinical Neurophysiologists—proposed a definition of brain death that is similar to the clinical diagnosis you've heard from Mr. Nathan and Dr. Shemie. The definition states that it is a clinical diagnosis that is made at the bedside, that confirmatory tests may or may not be necessary at the discretion of the examining physician, and that there may be time limits, such as 24 hours or less, to make that determination. But in large part, the diagnosis of brain death is made at the bedside and is a clinical diagnosis.

The Chair: Dr. Shemie, do you want to address that too, please?

Dr. Sam Shemie: Yes. I appreciate Dr. Crelinsten's comments, because we share that practice. The difficult issue of brain death... as you say, internationally there are some countries that are still addressing the issue of transplantation, and therefore the issue of brain death. Particularly, Japan is presently addressing the issue of pediatric brain-death criteria and is seeking our input into establishing formal criteria in that country.

I think it is widely accepted that clinical examination is sufficient for the diagnosis of brain death. Where you may use accessory testing, such as electroencephalograms or brain-flow studies, is when you are unable to do a proper clinical examination, for instance, in trauma to the face where you cannot examine the pupils to establish that they are truly not reacting to light, or for children or adults with spinal cord injury, where you cannot appropriately examine neurologically below the level of that spinal cord injury. Those situations in which there is some uncertainty as to the accuracy of the clinical examination are the situations where you would use additional, more sophisticated testing to establish that diagnosis. But in the majority of cases, clinical examination at the bedside, without the use of sophisticated technology, is widely accepted and used in the determination of brain death.

The Chair: Mr. Odegard.

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Mr. Larry Odegard: If I could just supplement those comments, my experience in both rural Saskatchewan and Alberta is that the ideal donor candidates, which will frequently be ventilator-dependent, would be transferred to appropriate facilities where the health professionals would in all likelihood have both the skills and knowledge to make these diagnoses appropriately. So I would think that as well would be the normal approach to treatment.

Mr. Maurice Vellacott: I have just a very short question for Dr. Howard Nathan. Would you be aware of those in the States that do question to some degree? I'm thinking particularly of Dr. Schumann, a neurologist. That's one name I'm aware of, and some others were also brought to my attention. Are you acknowledging that there would be some of those, but that in terms of brain death you're saying “widely accepted” means by the core, the bulk, the majority, if you will?

Mr. Howard Nathan: I think in my experience in our state, which has about 160 hospitals, there's no question that without exception brain death is accepted as a standard of practice. There are people who claim they have had patients survive, and I think the committee has heard that. In 21 years of practice I have never been in a situation where someone who has been diagnosed as brain dead, whether or not they were an organ donor, survived. They are without question dead.

The Chair: Dr. Shemie.

Dr. Sam Shemie: I'd like to reiterate something I said previously. Irrespective of the issue of organ donation, once the diagnosis of brain death is made, that patient will die. So if you separate out the issue of organ donation, that patient is still going to die. The issue is whether or not they die in addition to donating the organs. Again to be clear, it's not an issue of brain death and whether we should maintain life support treatment if they don't donate their organs. That's not the issue. Life support treatment in the form of a mechanical breathing machine is withdrawn. The choice is whether or not it's withdrawn with organ donation. That is standard practice in North America and in many countries around the world.

The Chair: Thank you very much.

On behalf of all committee members, I want to thank Dr. Shelton, Ms. Tregunna, Mr. Odegard, Dr. Crelinsten, and Dr. Guzman. Are you a doctor or just Mister?

Mr. Howard Nathan: It's Mr. Nathan. I should have corrected everybody.

The Chair: I referred to you as Mister. We had you less esteemed than all the other doctors.

Thank you very much, Dr. Hébert and Dr. Shemie.

I think you've already heard from all colleagues that this was a most informative exchange. We thank you very much for the trouble and time you've taken to share with us your experiences and expertise. If you think any voice or syllable has been lost, I can only assure you that it has been captured for all time in the record, which will form part of our deliberations.

I'm going to suspend for about 10 minutes before we go on to the next panel. I ask you to join us in having a little bit of juice and some healthy food for a few moments before we go into the next session.

Thank you very much.

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The Chair: The committee is resuming its session.

I want to compliment the staff. We have the best researchers on the Hill for this committee, but we also have the clerk, who is a person of the world and obviously has treated us to this very little refreshment, but it's one that excites the palate, at least from first visual experience. So my compliments, Madam Clerk.

We're going to resume our second panel. Let me introduce everyone first.

We have, from the Canadian Association of Critical Care Nurses, Rosella Jefferson, and from the Canadian Nurses Association, Sharon Nield. Good morning to you both.

From the Royal College of Physicians and Surgeons of Canada, we have Dr. Michel Brazeau and Dr. James Hickey. Welcome, gentlemen.

We have from the Ottawa Hospital, Civic Campus, Liz Anne Gillam-Eisen, from “Rose des Sables”, Linda Peltier, and from the University of Victoria, British Columbia, Dr. Rosalie Starzomski.

I noticed that most of you were in the audience when we had that first panel, so I think you're familiar already with the way we go. We typically go for about five minutes apiece from each presenter, and I think the clerk has given you an indication of that. Then we go on to questions from colleagues on either side.

I know some colleagues and some of the witnesses are still finishing up on some of those refreshments. I'll try not to call on you when the refreshments are directly in front of you.

So now that we've told everybody in Canada what's going on and we've contributed to the transparency of what transpires in these things, let's start with Dr. Rosalie Starzomski from the University of Victoria. She is an ethics consultant, Vancouver General Hospital and Health Sciences Centre. Doctor, welcome.

Dr. Rosalie Starzomski (Ethics Consultant, Vancouver General Hospital and Health Sciences Centre): Thank you very much. It's a pleasure to be here. I listened to the panel previous to this with great interest.

What I want to spend a few minutes talking a little bit about is some of the empirical research that I've conducted in the area of organ donation and transplantation. I've been a nurse working in this area for 20 years and actually moved into the area of ethics because of some of the issues I encountered in my practice as a nurse, particularly related to transplantation.

I see the ethical issues, as they fall out from transplantation, as falling into three broad areas: the macro issues, the issues of resource allocation at the level of society around how much we should be spending on transplants; some of the meso-level issues or the institutional-level issues, where we talk about things like selection criteria for transplantation; and then the micro-level issues, where we talk about organ donation specifically and different ways of expanding the organ donor pool, and some of those issues also fall into the macro- and meso-levels.

In my thinking about that, and also because of some of my experience, I designed quite a large study looking at resource allocation for solid organ transplantation toward public and health care provider dialogue, and I conducted 34 focus groups in British Columbia with members of the various health care professional groups, as well as members from a variety of different societal groups, and talked about a whole series of ethical issues that emerge from transplant case studies, as well as from some of the common practice that was occurring at the time.

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Interestingly, one of the things I found was that there was quite a bit of support within the consumer groups for the idea of organ donation—and I know you've heard about that over time at some of the presentations here. In fact, that was about 93% of the people, and in the group of 34 focus groups, there were 188 individuals. So 93% of those people were in support of organ donation as compared to about 76% of the health care providers. That was quite interesting to me, because as a health care provider myself and as a nurse, I thought actually there might be more support coming from that health professional group.

When I began to look at some of the reasons why there was less support within the health care professional groups, it really was primarily because of concerns that individual nurses, particularly critical care nurses working in transplant hospitals, had about the whole transplant program, concerns they had about how patients were selected for transplantation, concerns they had about how decisions were made about who would be added to the transplant waiting list, areas they were concerned about when it came to caring for recipients of transplantation and donors at the same time—some of the stress this was actually putting on the individuals involved in the various critical care units, and also because of some of the worries they had about technology moving faster than we were able to keep up with, with some of the policy around the technology that was being developed.

Interestingly, with the health care providers, the largest group of people who were non-donors were critical care nurses who worked in transplant hospitals. I think that says a lot about some of the kinds of things we need to be paying attention to when we're talking about making changes at the level of institutions and some of the complexities of those cultures in which people work.

With the consumers, part of the reason that people were not interested in being organ donors was because of some of their own personal, cultural, and religious beliefs. In the area of ethnocultural attitudes and beliefs, there has been very little work done looking at how we make this whole area of organ donation culturally sensitive. So I think that's one of the areas around which I would like to recommend that we look to doing further research.

I want to read for you a transcript excerpt from one of the nurses who was working in a critical care area, about some of the stress that they actually feel in caring for both donors and recipients.

When I was working in [another centre] most of the time I dealt with recipients and very, very few donors. And then when I come here, and we have the donor [going] out and then the next day the recipient comes in, and I cannot switch my emotions. I just feel very tense inside and because I was still thinking of the family of the person who just passed away and then trying to think of, oh, this person got his transplant. I don't know, I just don't feel happy about that and I feel very worried. I just can't, you know have my emotions switched off, you know?

I think that highlights some of the stress these nurses are working under—and it's nurses and physicians—and it once again focuses on some of the areas that were raised earlier this morning around trying to make sure we provide the support and education within hospitals and critical care programs so that people can actually be involved in organ donation.

The other areas we talked about in the focus groups were areas like consent for organ donation. Without exception, all 188 people who participated in the study were absolutely amazed to find out that their own individual consent about organ donation might not be honoured when the time came and that families might be able to override their wishes. So that was a major concern. I'm not suggesting necessarily that families ought not to be involved in this process, but I think, as the speakers earlier this morning talked about, it should be something individuals discuss with families prior to their coming to be in that situation, so that we have a better understanding of what it is people would want to have happen when they get into these tragic situations.

The other area we discussed was xenografting, and that was mentioned earlier this morning. Without question, there was great concern on the part of the individuals within these focus groups about the fact that perhaps technology was moving faster than we were able to actually provide policy to direct the development of the technology in this area, and they really called for more public discussion.

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There were several other places where people had very important things to say, particularly when it came to decision-making around transplantation. There were lots of concerns about the fact that there were not the levels of transparency at the various places where decisions were made around transplantation, which members of the general public would like to see. I think that was an important point.

In conclusion, I just want to support some of what I know the committee has already heard about the development of a national approach to coordination, standards and regulations, and data management for transplantation in Canada. Within that national approach there should be room for some type of ethics advisory committee, ethics commission, or something of that nature, so we can discuss the really perplexing ethical problems transplantation brings about.

I think there is also a need for improved institutional systems for organ donation. Earlier this morning we heard some suggestions for how we might be able to do that. I think we need to move toward the development of a Canadian model for organ donation and take from the best practices of places like Spain, the Delaware Valley Transplant Program, etc., the kinds of practices we can put into place that will actually develop a system for us that is Canadian, but also features some of these best practices.

There's no question, from my own research and that of colleagues, there is a need for improved professional education and discussion about transplantation. Although public education is very important, and ethnocultural issues are being much more closely studied and are having much more attention paid to them, there is a great need for professional education.

One of my colleagues at the University of Victoria, Dr. Anita Molzahn, has conducted a study that shows the majority of nurses and physicians in Canada do not know about issues like brain death. They are very unfamiliar with ways to refer patients for organ donation. There are issues they have that need to be discussed further within some of their own professional groups.

Whatever type of national organization we develop—of course, it would need to have provincial cooperation—we need to build in support for research and evaluation. This is an area where health policy is developed in somewhat of a piecemeal way, and I think we need to look more closely at best practices and evaluate some of what we're doing in the area.

Finally, I am supportive of some of the work I know has been done by the ACHS in this area. I think they've put forward 11 or 12 points on how we might strengthen this system.

I thank you very much for the opportunity to present and look forward to your comments.

The Chair: Thank you, Dr. Starzomski.

I'll go to Rosella Jefferson, vice-president of the Canadian Association of Critical Care Nurses.

Ms. Rosella Jefferson (Vice-President, Canadian Association of Critical Care Nurses): Thank you for the invitation to present on behalf of the Canadian Association of Critical Care Nurses, CACCN. We're a non-profit specialty organization dedicated to enhancing the quality of care provided to critically ill patients and their families in all regions of Canada, in both teaching and community health centres and in all areas of responsibility—direct care, education, administration, and research. CACCN stands alone as a specialty organization with the clear mandate of advancing critical care nursing.

We've been asked here to address three key points: CACCN's position on organ and tissue donation; the role of critical care nurses in organ donation; and the attitudes and concerns of critical care nurses about organ donation. I'll highlight the key points presented in our brief.

Before I begin, I would inform the committee that we have not surveyed our members to determine their responses to these issues. Rather, these are the views of the board of directors. These members represent all regions of Canada, from Halifax, London, Winnipeg, Regina, and Vancouver. These views concur with CACCN's philosophy, vision, and standards.

What is the role of the critical care nurse? There are an estimated 15,475 critical care nurses across the country working in both teaching and community health care centres. The priority of critical care nurses is to care for the client and family experiencing life-threatening illness or injury. If it becomes apparent that survival will not be an outcome, the critical care nurse's responsibility shifts to one of comfort and support.

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Through the relationship developed with the family, the critical care nurse is in a unique position during this period of transition to help the family through the processes of brain death declaration, decision-making regarding organ donation, and grieving.

It is CACCN's position that the critical care nurse should recognize potential donors and participate in the process of organ donation. This includes contact with the organ retrieval centre and collection of necessary specimens, as well as ongoing support of the family and optimal care of the organ donor until such time as the nurse either transfers or accompanies the donor to the operating room or the transplant hospital. The critical care nurse is in a position to promote the role of organ donation as a way to offer some meaning to a tragic and unexpected loss.

While the critical care nurse is crucial to successful organ retrieval, the premier focus for the nurse is the care of the donor and the family. The critical care nurse must remain non-judgmental throughout the process. If, despite appropriate education and discussion, a family declines organ donation as an option, the position of CACCN is that the family's wishes should be respected.

CACCN supports the development of national evidence-based organ donation protocols and standards, and initiatives aimed at enhancing the skills and comfort levels of critical care providers and improving inter-agency collaboration.

We are concerned with the impression that the critical care team could or should be more cooperative with organ and tissue donation and transplantation. We agree that collaboration of those involved is imperative, yet the factors influencing the process of organ donation and the eventual transplantation are numerous and complex.

We suspect it seems difficult for this committee to rationalize putting more money into research when it seems evidence is already available and the need for organs is so great. We believe, however, that the Canadian experience should be better explored and described, focusing not just on knowledge and attitudes of critical care nurses and physicians, but on resources, staffing shortages, ethical issues, and agency culture and commitment toward organ donation and transplantation.

CACCN would welcome the opportunity to partner with key stakeholders in research initiatives aimed at organ donation. We contend that facility commitment, agency culture, and medical practice are significant to the process of organ donation. Agencies must value and support organ donation through policy development and practice that demonstrate commitment.

Financial support is needed to provide orientation and ongoing programs for critical care staff regarding the process of organ donation and the skills required to effectively and sensitively approach potential donor families.

If a facility has guidelines that limit a nurse's ability to initiate discussions, or nurses perceive they may not initiate discussions, opportunities for organ donation may be lost. The critical care nurse should be recognized as a key collaborative partner with physicians in organ donation, with the accountability and responsibility of identifying potential donors and initiating discussions exploring beliefs and wishes regarding organ donation with the family.

Other factors may be contributing to the current organ donor crisis. Just as there are now more potential recipients due to changes in health care delivery, there may be fewer potential donors due to changes in public education and lifestyles. For example, one wonders if significant head injuries among Canadians have decreased as a result of programs aimed at decreasing drinking and driving and improving the use of seatbelts, car seats, and bike helmets.

Critical care nurses are playing key roles in initiatives aimed at reducing the severity of head injuries, illustrating our ongoing commitment to health promotion, illness prevention, and community partnerships.

To further address the concerns we've described in our written brief and in today's presentation, CACCN recommends the Standing Committee on Health invite direct critical care providers of both adults and children, with and without transplant experience, from community- and tertiary-level agencies to present their issues and perspectives.

Thank you.

The Chair: Thank you very much, Rosella Jefferson.

Let me go immediately to the Canadian Nurses Association, represented by Sharon Nield, who is the manager, nursing policy and regulatory support.

Ms. Sharon Nield (Manager, Nursing Policy and Regulatory Support, Canadian Nurses Association): Thank you.

I'm very pleased to be here this morning to represent the Canadian Nurses Association and to be here with our colleagues from the Canadian Association of Critical Care Nurses. We're pleased to participate in this important discussion about organ donation and transplant, and we welcome the perspectives of other nurses participating in this review in different capacities.

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The CNA is a federation of 11 provincial and territorial nursing associations representing more than 110,000 registered nurses in Canada. As the professional voice of nursing in Canada, our mission is to advance the quality of nursing care in the interest of the public.

You have heard from many expert groups on the issues of organ donation and transplantation over the past few weeks. My nursing colleagues here today are providing you with insight into the specific issues facing nurses, who are directly involved in this issue. I will focus my remarks around a few key national policy issues to which we believe we can make a contribution.

As you have heard from other witnesses, the issues surrounding organ donation and tissue transplantation are complex, involving a host of factors, including ethical and organizational considerations, education issues, and public awareness.

In 1994 the CNA developed a policy statement on the role of the nurse in organ donation and tissue transplantation. Copies are available to you. Our policy supports the role of the nurse in organ donation and tissue transplantation. Key elements of our policy include the need for appropriate information to allow for decision-making, the need for open and effective communication, and the development of positive collaborative relationships among the health care team.

A thorough understanding of agency policies and procedures regarding organ and tissue transplantation, combined with a knowledge of the legal and ethical issues around consent and confidentiality, are prerequisites for nurses to play a positive role in this process.

As we look at the role of this committee in making recommendations from a national perspective, we see three main areas of activity. The first area for national action is the area of education of health care professionals, and I believe that's a theme you have heard and will hear in the discussion.

We have heard that currently there are few incentives at the micro-level to support organ donation and transplantation. There is too much reliance on goodwill. Professional education must shift this perspective so that consideration of organ donation is part of a best practices approach, and by this we mean that it becomes an integral, accepted part of the professional's approach to care.

This is achieved by the health care professional having a good knowledge and understanding of the benefits of organ transplantation and the suitability of organs for donation and referral, the processes to be followed within the particular institution, and techniques to manage the sensitivities, the cultural, religious, and ethical components of communicating with and encouraging families to consider organ donation, and the professional's role in enhancing public awareness of the issue.

While the individual health care professional is responsible for his or her own education, there is a role for professional associations, regulatory bodies, educational institutions, health care agencies, and governments in supporting a best practices model. We recommend increased education of all health care professionals with respect to organ donation and tissue transplantation and believe there is considerable room for collaborative, multidisciplinary educational activities in this area.

The second area where we see the need for national action is in providing the strong leadership required to break down the current regionalized approach to organ transplantation and to develop a national structure. From the presentations you have already heard, we know what must be done. Plans and clear recommendations have come forward and been accepted, yet there has been little movement to a national model.

CNA endorses the call for a national registry and supporting structure as a means to enhancing the efficient, equitable, and effective handling of organ donation and tissue transplantation across Canada. We support a national approach, operating within the framework of our publicly funded health care system. We believe it is time for a commitment to action.

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The third area where we would recommend national action is in the area of public awareness. Consistent messages about the importance of organ transplantation and its possible benefits would go a long way in raising the understanding and profile of this process. The public would benefit from a greater understanding of the process of organ and tissue donation and what their rights and obligations are as possible donors or as family decision-makers. In addition, public awareness campaigns would overcome some of the misunderstandings and myths that persist, for example, with respect to brain death.

The federal government has had an excellent track record in facilitating collaborative national public awareness campaigns related to health promotion and disease prevention. Similar efforts to improve public awareness of this issue would be an appropriate role for the federal government and would demonstrate leadership. The CNA would be supportive of any such initiatives and would be a willing participant. As the largest group of health care professionals, nurses play an important role in public education about health issues.

In conclusion, the Canadian Nurses Association recommends that the committee use this review as an opportunity to lead the action required to improve Canada's record in the area of organ donation and transplantation. Registered nurses across Canada support organ donation and are active participants in the donation process. They play a strong role as patient and family advocates. We encourage support for collaborative education efforts, an increase in public awareness campaigns, and the development of a national registry and supporting structure.

Ladies and gentlemen, we look forward to your commitment to action, we thank you for your time, and we wish you well in your deliberations. Thank you.

The Chair: Thank you for those well wishes.

Let me go now to Liz Anne Gillam-Eisen, from the Ottawa Hospital, Civic Campus.

Ms. Liz Anne Gillam-Eisen (Organ Donor/Trauma Coordinator, Ottawa Hospital, Civic Campus): Thank you.

I'd like to thank Mr. Volpe and the members of the Standing Committee on Health for inviting the Ottawa Hospital, Civic Campus Organ Procurement Program, to share our experience, views, and concerns regarding the state of organ and tissue donation in Canada. Many of the issues I will talk about have been mentioned by previous witnesses; however, I'd like to expand and share our views with you today. Please, bear with me.

Unlike countries and programs that have had sustained success in outcome performance, such as Spain, Canada does not have a national coordinated system with formal policies to guide and regulate this area of health care. This is evident by the inconsistencies seen in Canadian organ procurement organizations or OPOs. At the present time, there is no regulation that standardizes operations. Mandate, practices, organizational structure, reporting mechanisms, and funding methods are varied and unique to each province and/or region within a province.

The term OPO is used in the United States to describe a federally contracted program that provides coordination of and facilitates the organ procurement process. In Canada the term OPO has loosely been adopted; however, we have no regulatory body that oversees the organ donation and transplant processes in our country. The Ottawa hospital program is among 15 individual organ procurement organizations in Canada. In the beginning, the responsibility of organ donor coordination belonged to the intensive care unit staff. The charge nurse, intensivist, and bedside nurse who are assigned to the patient would be responsible not only for the running of the unit and direct care of the potential donor and family, but also the booking of operating rooms, coordination of incoming teams, and ensuring that all tests and procedures were completed and results were communicated to the appropriate team members. The MORE Toronto program provided direction over the telephone.

As with many programs, the Ottawa OPO was born out of the existing transplant programs in the hospital. In 1986, the responsibility of the donor process was assigned to the two recipient coordinators because on-site coordination was deemed essential by the critical care staff in our hospital. However, because these two individuals were directly involved in the recipient management and care of recipients, the hospital community felt it was inappropriate to have the recipient coordinators involved with the identification of potential donors, approaching families, and declaration of brain death.

The Chair: Excuse me, may I ask you to just—

Ms. Liz Anne Gillam-Eisen: I'm too fast.

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The Chair: I can follow you fairly well, but if I want to follow you in French, I have to go through a medium, and the medium requires a slower pace.

Ms. Liz Anne Gillam-Eisen: I should slow down. Thank you.

The Chair: Thank you.

Ms. Liz Anne Gillam-Eisen: These crucial steps of the process were again left solely to the already overburdened critical care staff. There are hospitals and programs in Canada that continue to practise using the above-mentioned models. In 1991 the transplant committee of the Ottawa Civic Hospital proposed that a donor coordinator be hired, whose responsibility would be to facilitate the entire donor process, from identification of potential donors to declaration of brain death, approaching next of kin, obtaining consent, donor maintenance, assessment of donor, donor's allocation of organs and tissues, and the retrieval itself.

My background and previous work experience is that of a critical care nurse, which was felt to be one of the essential qualifications for the position. Since the establishment of the donor coordinator role, Ottawa's donor rate has fluctuated between 17 donors per million population to a high of 30 donors per million population. Last year, Ottawa's donor rate was 24 donors per million population—10 higher than the provincial and national rate.

I'm going to talk a little bit about informed consent, because that is an issue that I think has been raised many times over the last six weeks to almost two months that you've been meeting. These are some of my feelings and concerns regarding an informed consent.

As the health care professional and team member coordinating the donor process, I am responsible for approaching families and ensuring an informed consent is obtained. The potential donor may have communicated their intent to be an organ-tissue donor to the next of kin. However, it is unlikely, unless they actually work within the transplant profession or have done considerable research, that an individual has the knowledge required to constitute a prior informed consent. The family must receive information that everything was done that could be done for their loved one. A considerable amount of time is spent with each family ensuring they understand what has happened to their loved one, that brain death is death. The tests that are carried out to diagnose death need to be explained, and re-explained if necessary. Unless the family understands that death has occurred, it would be impossible for them to feel comfortable in allowing organ and tissue donation to proceed.

Also, all the information regarding the donor process needs to be shared with the family, including timing, what organs and tissues can be donated, confidentiality, and the Human Tissue Gift Act, before the signature on a consent form can be obtained. I spend approximately an hour with each family ensuring that they understand the process and are comfortable with the decision they have made.

I also would like to talk a little about the medical and social history questionnaire and the fact that we need families, number one, to understand the process, but also to be partnered with us in the process. Without them we would lack valuable information and would not be able to go forward with the process.

A comprehensive donor medical and social history questionnaire is now a required element at the Ottawa Hospital. For those of you who have given blood recently, the questions are similar to the Canadian Blood Services screening process, and include very personal information regarding sexual and social behaviours, including drug use and history of recent incarceration. The family's cooperation is essential to ensure the most accurate information is obtained and the safety of our transplant system is protected. It is the responsibility of the donor coordinator to ensure the information on the above mentioned questionnaire is obtained in a compassionate and reliable manner.

Despite the lessons learned by the blood scandal, not all programs are utilizing a comprehensive medical and social history questionnaire. This is another example of the lack of Canadian standards of practice and the need for a national structure to regulate compliance.

Next, I'd like to go through—and I know the committee has heard an awful lot about these—the Spanish and other models. This is something that, as a member of the national coordinating committee, we are looking quite strongly at as perhaps a model that Canada might be able to follow. So bear with me.

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Canada should develop an organized structure for donation, perhaps using a proven and validated model as a template and reformatting it to suit unique Canadian needs. The Spanish structure was designed around the key weakness in their and our current system, that of donor identification. The model could be adaptable to the Canadian health system, as they too have decentralization of health care responsibilities to the regions—in our case the provinces. Even further, the delegation of the actual donor process is the responsibility of authorized donor hospitals and specialized teams.

The national coordinating structure in Spain provided for the development of national legislation, policies, documents, and a forum for ethical and research discussions. National legislation designates key authority and key processes that must be followed to ensure optimal results with a standardized and accountable approach toward donation.

Other responsibilities of the national structure include the coordination of mass media, public relations, and social marketing strategies. The national structure facilitates the collection of data and the flow of information and coordinates research activities. The department of health in Spain assumes joint responsibility for the outcomes with the region.

It was essential to clarify and define the key responsibilities and lines of authority within this three-level structure. As Spain has done, Canada could identify which hospitals should be authorized donor hospitals. Donation teams could be placed within these facilities to facilitate the donor process.

Standardized training is another essential element that has been addressed by successful programs. The personnel at all levels have received the required education and training for the activities and responsibilities they assume. A formal course for the education and ongoing proficiency of the coordinators is in place. Donor coordination is seen as a unique discipline and is funded as such. It is not viewed as a division of transplantation.

The Spanish model has proven and sustained success, improved donation rates, and declined waiting lists, especially for renal patients. Last year the donor rate in Spain was over 30 donors per million population.

In conclusion, Canada is unique among major transplant countries as it does not have a central administrative system to address critical transplant issues, from organ and tissue donor awareness to organ sharing, safety practices, and transplant performance. There needs to be an overall structure or national organized approach to ensure accountability and safety within these important health care programs. There is need for governments to invest significant resources in such a structure to not only support donation, but to ensure optimum public safety. There is the need for governments to support a coordinated approach to public education as a critical component to the donation process. Perhaps, using a proven model as a template, we have the opportunity of developing an effective donation program within Canada's health care system.

A final note, and one near and dear to my heart as a donor coordinator, is the lack of recognition of donor families, the true heroes in the donor process. Standards of care for families must be identified, and ongoing recognition by government and programs must be a priority. I urge the federal government to support and fund the donor medal of honour. The medal is a concrete symbol that donor families cherish. These people and their families have contributed more to society and others at a time of personal tragedy, death, and grief than most of us will throughout our entire lives.

I'd like to thank the committee for the opportunity to share my experiences, views, and suggestions with you, and if you have any questions I'd be pleased to attempt to answer them after the panel presentations.

The Chair: Thank you very much.

I'll go now to Linda Peltier from Rose des Sables.

[Translation]

Ms. Linda Peltier (Registered Nurse, Grief Counsellor, Rose des sables): Good morning. Thank you very much.

The beginning of the third millennium places the issue of organ and tissue donation at the eye of a hurricane of new requirements. For Rose des sables enregistrée, the firm of which I am the founder, this time is an opportunity for social objectives and a humanitarian mission to be fulfilled by means of organ and tissue donations, now vital to modern medicine.

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Over the past few years, I have carefully planned my involvement in this field, in order to equip myself with the tools required to promote organ and tissue donation: 15 years of experience in intensive care and emergency care in hospitals in Quebec; five and a half years as coordinator and clinical counsellor at Quebec Transplant; a Masters Degree in death studies from the University of Quebec in Montreal and more recently, the foundation of a grief counselling firm, Rose des sables.

I want today to provide testimony on a very special opportunity in this field, focussing on the two preliminary stages of the organ and tissue donation process: identification of organ donors who are brain dead and techniques for approaching organ donors' families.

[English]

In 1998, the Partnership for Organ Donation Inc. concluded a study throughout Canada and the United States in order to identify the reason for the shortage of donors. As a result, the medical record review indicated that 51% of potential donors are not referred to the responsible organ procurement organization. The reasons explaining this weak rate of identification are numerous.

The first cause is explained by the frequent remodelling of the selection process of heart-beating cadavers. The identification criteria are constantly changing, the procedure updated too often, information incomplete, and long delays.

The second cause resides in the complexity of the rules transmitted to the health care team. The concept should be defined and unique. Every brain-dead patient is to be considered a potential donor and should be referred to the responsible organ procurement organization. The next step would confer to each transplant specialist the final decision according to the specific needs of the patient awaiting transplantation.

[Translation]

The second aspect of my testimony has to do with techniques for approaching organ donors' families in order to obtain consent for donation. As the Medical Records Review Report shows, only 63% of organ donors families are approached in order to obtain consent. Here again, this situation has as much to do with health care team members in hospitals as with the present organ donation process.

Physicians and nurses have lost the ultimate battle: death has won over care, medication, and leading-hedge technology. Health care team members are facing the patient's death and—however little acknowledged—their own values and the range of emotions that characterize grief. Shaken, they wonder whether members of the family of the patient, a potential organ donor, are prepared to be approached for consent.

Studies have shown that 86% of families approached affirmed that organ donation helped them by highlighting one positive aspect of death, and that 89% of them would do the same if the opportunity arose again.

Requesting consent is therefore part of the organ and tissue donation process, but a protocol for appropriately approaching organ donors' families must be established.

On the basis of my further academic training and particularly my active participation in situations in the organ and tissue donation process, I submit to you the following summary of a protocol for appropriately approaching potential organ donors' families.

1. After the physician has announced the patient's death, at least 15 minutes, called a period of letting go, should elapse before families are approached for consent to organ or tissue donation, which will double the rate of consent.

2. Health care team members requesting organ or tissue donation should ensure that families understand and accept the concept of brain death, the medical examinations required, and the mechanical maintenance of the cadaver organ donor.

3. Health care team members requesting organ donation must themselves understand and respect donors' families' values, decisions, and questions.

4. Health care team members requesting donations must explain the benefits of organ and tissue donation for families' grief and for recipients and their families.

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[English]

Recommendations included in the final report deposited in 1997 by the Gélineau committee included concrete action in order to attain a better donor identification rate and to approach the families of donors by using more adequate techniques. The recommendations state that a doctor or a nurse should be appointed in every hospital, responsible for recruiting potential organ and tissue donors.

Personally, I would suggest the creation of a specialized team, which would include doctors and nurses. This solution could solve problems such as availability, time restraints, level of responsibility, and permanence of a team.

[Translation]

In light of this recommendation, Rose des sables enregistré is prepared to train and equip the many health care team members involved in the organ and tissue donation process in hospitals.

In order to validate the principles underlying my testimony, I have also undertaken a study that, I am convinced, will show that a specific protocol for identifying organ donors and appropriately approaching organ donors' families will substantially increase the number of transplants possible in the mid term. Novartis Pharma Canada Inc., a manufacturer of immunosuppressive drugs, is already subsidizing this study, and other pharmaceutical companies have also indicated very marked interest in becoming involved. Transplant team physicians in university hospitals in Quebec have also given the study their support.

Allow me to conclude my testimony by reiterating, firstly, the importance of allowing the many stakeholders in the organ and tissue donation process to better understand and accept the process of facing the death of a patient, identifying that person as a potential organ donor, and maintaining that person—whatever we may think, death is still a forbidden subject among health care teams and members of the public—and, secondly, the importance of providing a clear and specific process, developing effective tools, and making available a training program appropriate to the multidisciplinary nature of the organ and tissue donation process.

I hope I have convinced the committee that identifying potential organ donors and approaching organ donors' families have proven to be crucial stages in the organ and tissue donation process, and that it is imperative to validate these premises. A follow-up study will certainly be a necessary next step.

I also want to suggest that I submit the results of my study to the committee, so that committee members can read and validate the various aspects of my testimony today.

Higher organ donor identification and organ transplant rates are the ultimate objectives of these hearings. Thank you for giving me an opportunity to share with you my heartfelt convictions and, I hope, to play an active part in achieving the objectives of the committee and all stakeholders in the organ and tissue donation process.

The Chairman: Thank you. I can assure you that you've been successful. I don't know if you've managed to convince the entire committee, but I can assure you that your presentation will have had an effect.

We will go on to Dr. Michel Brazeau and Dr. James Hickey. Dr. Brazeau.

[English]

Dr. Michel Brazeau (Chief Executive Officer, Royal College of Physicians and Surgeons of Canada): Thank you, Mr. Chairman. The Royal College of Physicians and Surgeons of Canada is honoured to have been invited to this meeting with the House of Commons Standing Committee on Health and to have the opportunity to contribute to the study of some of the ethical issues relative to organ donation and transplantation.

During preliminary discussions with the staff of the committee, the college pointed out that although it is a standards-setting organization for specialty care in Canada, the college does not have specific standards relating to the issues before you. We were asked to come to explain the role of the Royal College of Physicians and Surgeons of Canada within the health care community, to discuss why the college does not have specific standards relative to issues such as the ethical considerations surrounding organ transplantation, and to present the perspectives of specialty medicine on the diverse interpretations that can be encountered in the health care community for a given standard, a given principle, or a given guideline.

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The Royal College of Physicians and Surgeons is an organization that is essentially composed of medical specialists dedicated to ensuring the standards and quality for specialty care in the community. We've left with you a number of documents that will describe in detail our organization. Currently, there are approximately 30,000 medical specialists who are members of the royal college. The vast majority are located in Canada. I'm very proud to call attention to a particular characteristic of our organization, which is the committee work, so important to the college, that continues to be carried out, essentially, on a volunteer basis.

The ultimate authority of the college is our council. The overall activities are administered by an executive committee, and the day-to-day activities are administered by the chief executive officer and four directors.

The standard-setting role of the college applies mainly to post-graduate medical education, where the college accredits the training programs for specialty medicine in the 16 faculties of medicine in Canada. The college credentials medical specialists and administers the examinations leading to certification of medical specialists nationally.

Our standard-setting role also applies to continuing professional development. The college has now initiated a mandatory maintenance-of-certification program for all fellows of the college. In so doing the college recognizes changing public expectations as to physician accountability and assists its members in the explicit demonstration of their ethical obligation to maintain their competence throughout their career.

Finally, the college plays a standard-setting role in the broader arena of health policy, where it contributes to the establishment of broad governing standards for specialty care. We are particularly focusing at this point in time on the physician workforce, the relationship between the physician workforce and other health care profession integrated services, and also on the development of new organizational models for specialty care in Canada.

As we carry out our activities, the college relates intimately with the faculties of medicine and national specialty societies in constantly maintaining the high standards of post-graduate medical education in Canada. The college thereby has the opportunity of facilitating the introduction of change at the very point of entry of young Canadians into specialty medicine. In the documents we are leaving with you, we have provided a number of examples as to how, through the accreditation process of training programs in Canada, the college can facilitate and contribute to change when warranted.

The Royal College of Physicians and Surgeons and its counterpart in family medicine, the College of Family Physicians of Canada, are often confused with the provincial licensing authorities, which are also called colleges. It should be clearly understood that the authority to license physicians to practise in Canada resides with the provincial licensing authorities or provincial colleges.

The royal college grants specialty certificates to those who have completed the required training in post-graduate medical education programs that meet royal college standards. It also credentials those who have met the requirements for credentialing and those who have passed the required examinations. Licensing authorities can and do authorize physicians to practise, whether or not they have a specialty certificate from the Royal College of Physicians and Surgeons of Canada. The high standards relative to royal college certification do, however, make that credential very attractive when recruiting medical specialists, and the certificate of the royal college is in fact the established entry point for the register of specialists in Canada.

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The college recognizes 53 specialties and subspecialties in Canada. That is the very reason the college does not attempt to set specific standards in each of these domains, but rather collaborates with the national specialty societies, the faculties of medicine, the licensing authorities, and other organizations to that purpose. More specifically, the royal college does not establish specific clinical guidelines in each of the arenas of medical practice.

Finally, to address the issue as to the perspective of specialty medicines with regard to the different ways in which a given standard, principle, or guideline may be applied by a medical specialist in his daily activity, one needs to focus on the ultimate challenge of medical practice. The challenge is to deal with the suffering, the disease, and the disabilities of individuals, every one of us being different in some way from every other person and reacting in very different ways in different settings. To best respond to each patient's needs, the physician must integrate and reflect upon the array of specific considerations that arise relative to each patient. It should not be surprising to see principles, guidelines, or standards not being applied in the same way in all settings to all individuals.

In conclusion, we would like not only to draw attention to the role the college can play in facilitating change at the point of entry of young medical specialists, but also to point out one of the main challenges of medicine today in the ethical domain, and that is to go beyond the ethics of the patient-physician relationship and to engage more fully in the ethical relationship between medicine and society. This is not a matter of choice. It is an obligation the medical profession must rise to.

Thank you, Mr. Chairman.

The Chair: Thank you, Dr. Brazeau.

I'll go immediately to my colleagues on my left here, starting with Mr. Vellacott.

Mr. Maurice Vellacott: To the witnesses, I appreciate the testimony you have given so far.

First, I want to address one question to Dr. Rosalie Starzomski. We've always assumed, I think, running over a number of weeks here, that if there were more public education and we somehow got the public up to speed, that in and of itself would make for a very significant increase in terms of donor donation. It has kind of been alluded to again today, I think. In view of some stats, I'm thinking that maybe we want to get them up to a level of exposure, such as intensive care nurses or the CCU, as you said, because then it goes down. Am I correct in understanding that?

Dr. Rosalie Starzomski: What I was suggesting is that when studies have been done looking at public awareness and whether the public is interested in being donors, the numbers have been very high. In my study they were as well. Of the individuals I studied, 93% were interested in being organ donors. Now, whether that translates into practice is, of course, another question.

Mr. Maurice Vellacott: Was it 77% for the CCU?

Dr. Rosalie Starzomski: That was of the critical care staff. The health care provider staff was much lower.

I'm not suggesting that we shouldn't continue with public awareness campaigns. Those are very important, particularly, as I was trying to highlight, in the area of the variety of ethnocultural groups, who right now don't get any culturally appropriate information about this.

But the area where there is a bottleneck, quite frankly, is at the level of the institutions and the critical care units themselves. Not all of the people who work there are convinced that transplantation is a good thing. They're not all supportive of transplantation. What my study showed is that a number of critical care nurses have decided not to be organ donors because of the concerns they have about the transplant program in general. So what I was suggesting is that we need to focus some of our attention on opening up a dialogue within those critical care units in order to understand more about what's happening and the lived reality of those nurses and why they believe being organ donors is not important for them.

So it's a double-barrelled thing, but I think a lot of attention has been put on needing to educate the public, which is something I'm supportive of. But the public is telling us in these various surveys we've done that they want to be organ donors but they need to be asked, and they need to be asked, as many of my colleagues here have said, in a supportive environment where this issue can be explored appropriately.

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Mr. Maurice Vellacott: I ask that question because somehow in my mind was this model of possibly showing a video, or what exactly a person would encounter in terms of a donation of an organ, or what the family would be facing, or what it would play out like. But in hearing you, it's the kind of education the public would get, because you would have thought if anybody is exposed to and understands what this whole area is about, it would be these ICU and CCU nurses. Yet you have a little reticence or reluctance there, and you have to dialogue, I agree, with those people on that.

Dr. Rosalie Starzomski: Right. There's certainly some preparation they've had and some education, no question, but there needs to be more of that, and more discussion, just openly, about transplantation in general.

The focus in critical care areas, and my colleagues here will probably speak to this further, is very much on saving lives, and organ donation and transplantation are a small part of what those nurses do.

Mr. Maurice Vellacott: Let me get my next two questions in very quickly because I think my time is expiring. I'll ask this question then, and before you respond I'll get the other one in.

You think doctors and nurses don't know about issues surrounding brain death, you said. I find that surprising, and I would have thought that would have been fairly uniform across the piece, especially among doctors.

My other question, and each one of you can respond here, is this. Would you be in favour of expanding—and I talked with one of the doctors from the previous panel; it's come up before—the definition of brain death to a more widened, broader, liberal—and I mean that, Joe, in a non-partisan, small “l” sense of the word—definition of brain death so that the cortical brain death, higher brain death, is all that's required to make this determination of brain death? There would be other functioning of the brain, but not the cortical, and we'd move to that broader definition.

There is talk of that, apparently, and it was acknowledged by some of the medical people here.

Dr. Rosalie Starzomski: To answer your first question about doctors' and nurses' knowledge about organ donation in general, my colleague at the University of Victoria, Dr. Anita Molzahn, conducted quite a large study of the CNA, the Canadian Nurses Association, and the CMA, the Canadian Medical Association, members, a couple of thousand from each group, and the numbers she reported were that, on the average, about 62.2% of the nurses responded appropriately to the questions, whereas 63.3% of the physicians had the correct answers when it came to knowledge about transplantation.

The questions that most responded to incorrectly related to brain death legislation and religious barriers to organ donation. So those were the two areas where there was the least amount of knowledge.

Around your second question about expanding the definition of brain death, I think the definition of brain death we have currently is very adequate. I think what has happened, from my reading of some of the testimony that was given to this committee, as well as what's been reported in the media, is people have misinterpreted that very definition. I think we probably need to be much clearer with the public about what we mean when we talk about brain death as it's currently defined.

I think the discussion to expand that is one that probably does need to occur, but at this point I'm not prepared to make a statement to support, or not support, that because I think we haven't had the discussion we need to about what the implications are related to that.

Mr. Maurice Vellacott: Do any of the others wish to quickly respond to that?

The Chair: It will have to be very quick.

Ms. Linda Peltier: I'll make it quick.

Of course, if you start changing the criteria of brain dead, you'll have the same effect on hospitals because they won't have the same information. Secondly, the public will be scared because we will change to make it ease a couple of people.

I think the most important thing is to change the attitude of the health care team about bereavement, death, and how to approach the family. Give them the tools on how to support the family, so that the family will make the decision and you will be able to gain the 50% of donors you're losing, not by doing any changing, just by supporting and giving information.

The Chair: Sharon Nield.

Ms. Sharon Nield: I would suggest that there needs to be more focus on people understanding the current definition, which seems to be quite workable. But if we're looking at a survey that shows almost 40% of physicians and nurses are not aware of the legislation, and I understood Rosalie to say it was the legislative issues around brain death, it really highlights the need for more education of health care professionals.

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Mr. Maurice Vellacott: Is the definition yes or no?

Ms. Sharon Nield: I would suggest that it's not important at this time to expand it. But if so, a discussion would need to be had, and quite a serious one.

The Chair: Liz Anne Gillam-Eisen.

Ms. Liz Anne Gillam-Eisen: Brain death, as it stands now, is death. The death certificate of a donor is signed and dated the time the donor is declared brain dead, not the time they're removed from the ventilator. If there's still some brain function, that is not death; the patient is not dead. We wouldn't be able to sign death certificates prior to removing patients from ventilators. I think as we stand now, the definition is death, and that's what we've been trying to educate health care professionals about, and we need to obviously continue doing that in a better and more effective manner.

Mr. Maurice Vellacott: The medical circles have expanded it, and you're not in favour of expanding it at present?

Ms. Liz Anne Gillam-Eisen: As far as removing organs from the living, no, I'm not. My personal feeling is that no, they must meet the criteria for death. Those criteria have been defined by neurosciences and health care professionals and physicians, and I think it's an adequate definition.

The Chair: Dr. Brazeau.

Dr. Michel Brazeau: No comments.

The Chair: So you're in favour of the status quo?

Dr. Michel Brazeau: That is not at all what my silence says.

The Chair: I interpret your silence, so—

Dr. Michel Brazeau: If you're going to interpret, I'll speak up.

The Chair: That's good.

Dr. Michel Brazeau: I think in fact, no, we're not in favour of the status quo, and I would make two comments at this point in time. One would perhaps tend to look at the issue as one of insufficient... or information inadequately being put forward. That is very often not the problem we are finding within the medical community in our educational processes. We are finding that very often the information is there, is accessible, but that it's not sufficient to bring about the type of discussion or changes that clearly we are seeking at this point in time. We have to go beyond this; we have to go beyond making the information available.

We're indicating that within our own environment at the royal college, with the leverage we have in terms of medical education, there are certainly a number of opportunities for us to intervene, together with other organizations, and to start at probably the most appropriate point, the point of entry, for the young medical specialists who are coming through. We certainly can intervene there. We are certainly looking for more than just making more information available to the medical community. We have pointed out that we're looking for a much better integrated health care system at this point in time in dealing with issues such as these.

We have not come forward with an in-depth review of how our 30,000 fellows look at the issue. We just didn't have the time in the timeframe that was allotted to us. But these are issues that the royal college I think wants this committee to know it is very willing to deal further with. Clearly, as you move along with your work, I'm quite sure some of the national specialty societies and other groups will be looking again for our collaboration in ensuring that the proper educational processes are put into place to bring about the required changes.

We have no specific suggestions at this point in time as to what those changes should be.

The Chair: It may be a wee bit of an unfair question on my part, but I'll ask it anyway. You monitor standards, and I took your presentation to be one that indicated you're very involved in the monitoring of the standards of each of the specialties and in ensuring that the appropriate standards are always met. So to my mind you must have a collection of data systems in place so that you can draw information, assess it, evaluate it, and then apply it. Am I wrong in that?

Dr. Michel Brazeau: No, you're right in that. But I think what has to be specified is that we are looking at broad governing standards, that we do not monitor, for example, through the accreditation of the educational programs, the details of practice or practice-specific details for the 53 specialties and subspecialties that exist in Canada. That's a formidable number of specialties and subspecialties. What we in fact do is ensure that the broad governing standards are out there, that they are being dealt with in the faculties of medicine, but we do not get involved in the fine-tuning of the practice-specific standards. That becomes much more the work for the national specialty societies, for the faculties of medicine themselves, for the clinical departments themselves. We do not go into that depth unless a specific focus is put on an issue, and we work jointly on that with other organizations. But at the outset, we're looking at very broad governing standards.

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The Chair: Maybe it's incorrect to use the word “specialty”, but let me use it for the purposes of the academic discussion we're having. In this area of specialty, it would be only those individuals involved in this area who would be establishing standards, not the royal college.

Dr. Michel Brazeau: No, the royal college establishes broad governing standards as to responsibility, for example to teach medical ethics to the residents in all of our programs. There are standards relating to the teaching of ethics, but the very specific aspects, the specific issues that are dealt with in ethical consideration, are not monitored individually nor put forward by the college specifically. We do not have specific standards as to ethical considerations or issues relating to organ transplantation.

We do have a number of documents, and you have examples of those within the documents we've left for you, where we do act as a resource and ensure that the discussions and focus on these issues are there. There are broad standards and obligations, but at this point in time we don't go into the depth that perhaps some think we go into. We can. We can decide if there is going to be a thrust in that direction. The royal college can certainly get involved in that activity, be extremely supportive, and use its full leverage with the faculties of medicine in those circumstances.

The Chair: Dr. Brazeau, I thank you for that clarification. Perhaps one of the reasons you might have found a bit of confusion about why you were asked to come before the committee is that some weeks back we had a representative who suggested that standards could be established and met only if you had all the appropriate stakeholders at the table. The people that were suggested at the time were, of course, the actual physicians and specialists, but not their representative organizations, because the representative organizations would represent the business interests, if I quote them correctly, of the practitioners. The people who should be most involved in establishing the standards, with both the clinical practices as well as the ethical practices, really resided with the colleges of physicians and surgeons. This is why the committee was interested in hearing your views.

Now, if you'll forgive me—and I'm only a single individual on this committee—it sounds as if the ball has come back across the other side of the net.

Dr. Michel Brazeau: Not completely.

The Chair: Okay.

Dr. Michel Brazeau: We are not dissociating ourselves from this, but we are asking people to have reasonable expectations about what we are doing presently in that arena. You do call attention to some very important aspects within the medical community. Yes, the Royal College of Physicians and Surgeons advocates for specialty care in Canada. We do not advocate for the specific interests of medical specialists. Medical organizations at times are caught up with advocating for both aspects—the interest of the individual specialist and the interest of the patients they care for.

Those organizations generally fare well in that avenue. It does bring about some difficulties and there are some concerns, but there are certainly no difficulties in getting together the different types of organizations, particularly the ones I've referred to before, the national specialty societies, the royal college, and the faculties of medicine, with other organizations, such as the CMA and many others beyond, to exercise some thrust.

What's clearly anticipated or expected from the royal college right now is undoubtedly more involvement in dealing with the day-to-day issues that are of concern to Canadians. I think the royal college is saying we are very willing to get more involved in these issues, but we cannot pretend to get fully involved in the detailed specific standards that apply to all 53 of our specialties and subspecialties. We just do not have the capacity to do that. But we are a collaborating organization.

We are not standing aloof from all of this. We are trying to take the role of an umbrella organization and, when necessary, make sure the partners are being brought together. We're doing this concretely right now on some other issues relating to the recruitment of international medical graduates and the issue of rural medicine. We're willing to tackle some of these issues. We can't tackle all of them at the same time, and we cannot be reasonably expected to prescribe the specific standards in detail.

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The Chair: We may come back to that again, Dr. Brazeau.

[Translation]

Ms. Pauline Picard (Drummond, BQ): Good afternoon. I want to thank you for having come here to give us your testimony; all the presentations have been very interesting.

To follow up on the chairman's question, could you provide me with further clarification, Dr. Brazeau? Your college trains specialists who have a role to play in the study currently being conducted on the issue of organ and tissue donation; one also hears the term xenotransplantation. Did I hear you say that in the course of the training provided to specialists, you do not offer any training regarding standards or codes of ethics or conduct?

Dr. Michel Brazeau: That's not quite the case, madam.

Ms. Pauline Picard: No?

Dr. Michel Brazeau: First of all, we do not train specialist- physicians. We set out Canadian standards that are applicable in 16 faculties of medicine. We also handle the professional development of all specialist-physicians who are members of our organization. Another organization, the Collège des médecins du Québec, is engaged in similar activities, and we work closely with that college.

With regard to the issue of ethics, we do indeed have a role to play and we are very active in the area of medical ethics. We don't do this by decreeing specific rules applicable in individual circumstances, for instance in the case of transplants. Instead, as a standards organization, we issue a general statement on the ethical responsibilities of doctors. More specifically, we endorse the standards of the Canadian Medical Association as well as the code of ethics that prevails in the province of Quebec.

In fact, there are several codes of ethics in existence and we have not developed our own. We ensure that faculties of medicine adequately present and teach ethical issues and adequately address the questions that arise.

One of the issues I referred to earlier was not only that of the responsibility of a doctor toward his or her patient, which has always been dealt with exhaustively in the code of ethics that currently governs us in Canada, but also the respective responsibilities of the medical profession, or medicine, and of society as a whole. That is a fundamental question that the profession will have to address, that it has already started to examine and to which the Royal College will certainly contribute.

No, we are abstaining, but we don't go into detail. We ensure that ethical issues are clearly included in the responsibilities of faculties of medicine, that they are adequately taught, but without claiming to define in detail the rules that govern each specialty.

The Chairman: Madame Picard.

Ms. Pauline Picard: I would like to get your opinion on current codes of ethics or conduct or on this code in relation to tissue transplantation, organ donation and xenotransplantation. Right now, aren't we at an impasse of sorts? Isn't it true that the rules are unclear? I get the impression that every organization shows good faith, but that the rules of the game are not clear.

Dr. Michel Brazeau: I share your opinion that every participating organization is acting in good faith. I'm not as convinced as you are that the discussions always go into as much depth as they could or should, but I believe that we all hope that this will become the case.

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I don't know if you want me to deal with this issue in a specific manner. Unfortunately, you're asking me my personal opinion. I am a clinical microbiologist. My involvement in transplantation activities is therefore quite specific. I'm probably not the best person to ask. I think that many other individuals who appeared before you could give you a better informed personal opinion to answer your question.

Ms. Pauline Picard: My question is for Dr. Starzomski. You referred to serious problems of professional ethics and conduct resulting from the fact that nurses are worried about the choices made in transplantation with regard to care afforded to donors and recipients, the issue of cultural beliefs and the fact that this whole process is not sufficiently transparent. Don't nursing staffs receive any training regarding the ethics and professional conduct issues surrounding the strategy for donated organ and tissue transplantation?

[English]

Dr. Rosalie Starzomski: Thank you for your question. In terms of basic education, I teach in a nursing school, so we provide some basic education to our nurses about issues around transplantation and ethics. We also provide information to the students about specific kinds of issues they should be concerned about around ethnocultural differences.

We have nursing units where there are a number of nurses from different kinds of educational programs. They are involved in the day-to-day dynamics of working in that unit, with all the stresses, patient care issues, etc., that come up. There are often gaps in their education, and one of those gaps is in talking about their own personal feelings about ethical issues related to transplantation. There is a gap in hospitals, in general, in talking about what we're doing. We're all busy doing something, but we often don't get a chance to talk about what we're doing.

When I was doing my study I did three focus groups with critical care nurses. When I talked to those nurses, they told me it was the first time they had a chance to come together as a group to talk about their opinions and ideas on organ transplantation. These are the very nurses who are involved on a day-to-day basis in caring for donors and recipients. So in hospitals the resources are limited to have the time to spend, after the basic education, to talk about some of these issues.

The ethnocultural issue I was referring to was in relation to the kind of information that needs to be available, so in different critical care units, the idea of organ donation can be presented in a culturally sensitive way to people from different cultural groups. We have research that shows members of some cultural groups are not as willing to be organ donors as members of other cultural groups.

Although the research is very limited and we need to do more work in this area, it shows part of that is related to who presents the information, whether the person is from the cultural group they're asking for the donation to come from, and just the kind of information that's presented. In our western world we come from a very autonomy-based kind of ethic, whereas some groups from other cultures come from a very family-oriented ethic. So a lot of work needs to be done in that area. Once again, in our busy critical care units, we have not paid a lot of attention to this.

[Translation]

The Chairman: One last question.

Ms. Pauline Picard: I'm very interested in xenotransplantation. I get the impression that we have not received much information about that. In the course of the training that you provide to future health care professionals, do you address this new practice of xenotransplantation?

[English]

Dr. Rosalie Starzomski: That's another very good question. On a personal level, I do because I come from a background of having worked in the area of transplantation for 20 years. This issue is very interesting to me and I make sure the students I'm working with have an opportunity to discuss it. But I don't think that's necessarily the case across the board, because different people have different interests.

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In ethics it's the same way. I work as an ethics consultant at the Vancouver Hospital, and in discussing this with my colleagues I have found some of them have very limited understanding of what's happening in the xenograft area, just because of their own personal areas of interest.

So in terms of that one issue, based on my study and the comments other people have made to me over the last number of months about this, we need to have much more public discussion about xenotransplantation. We need to be writing about it within our own professions. Nurses need to be thinking about it. Physicians need to be thinking about it. We have an opportunity to review the document from the xenotransplant forum that was circulated to many of us across the country. But I think it needs to be raised to another level of discussion, with much more public discussion.

The Chair: Thank you, Dr. Starzomski.

Madam Redman.

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

Jumping right on Dr. Starzomski's last comment, what is the best process or platform to make this a public debate, as opposed to a discussion amongst a small group of professionals?

Dr. Rosalie Starzomski: It's a great question. I'm going to leave a copy of my research study that focused on how to talk about these kinds of ethical issues within some kind of public context. One of the things I found was that people from all walks of life in all different kinds of places are very interested in these discussions.

I had round table discussions with people in the downtown east side in Vancouver who knew nothing about transplantation, other than what they had heard in the media, but they had a lot of feelings about some of these issues, particularly issues like xenografting.

I talked to church groups, high school students, and seniors and it was the same kind of thing. Once the issues were raised, they had lots to say about them.

We should be looking at a multifaceted kind of approach, so we need to have some small-group-organized kinds of discussions in various places within the various provinces. We need to have more federal debate about it, some media debate about it, and opportunities for people to take part in discussing it in different educational areas and facilities. So it could be very much a multifaceted kind of approach.

Mrs. Karen Redman: Thank you.

Dr. Brazeau, you talked about removing ethics from the realm in which it currently exists to one between society and medicine. Again, that calls for public debate. I wonder if you would like to comment on what the best platform or vehicle would be to make it more public.

Dr. Michel Brazeau: I completely agree with you that this means bringing it into the public domain to a much greater extent. I'm perhaps a little critical of my own profession in saying this, but we have traditionally reached the public through the patient-physician relationship, and we have come to the public also advocating some of our specific concerns.

We need to get more into the mode of engaging in public discussions from this point on, and one of the elements that will make the medical profession ready to do so is the clear recognition that as medical systems and health care systems throughout the western world in particular are developing, the public will have to come to some decision in the fairly near future as to what they expect from their physicians. Will they essentially continue to be persons they can rely on to take the patients' best interests as the prime consideration, or are we moving into a society where we will look at physicians as individuals who are making services available, as determined by governments or authorities, in keeping with the national scope of programs?

Clearly, I think the physician community recognizes this as one of the important public debates that will be carried out. It will not be the only one, but I think it will drive us into becoming much more involved in public discussions and debates, hopefully on issues such as the one you're dealing with today.

Mrs. Karen Redman: Could you comment on the appropriate role of the federal government in those discussions, or have you thought that through?

Dr. Michel Brazeau: I think we have more than thoughts. We have already engaged in discussions with the federal government and we are engaged in discussions now. We have to be willing to engage in discussions with all of the authorities involved in any way with the health care system.

We need to look at all of the aspects. We have not sufficiently done so in the past. To some extent the physician community has felt itself to be displaced out of a number of the mainstream discussions over the past few years.

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I've also attempted to indicate to physicians that I have personally felt—and I think a lot of my colleagues feel the same way—that physicians have also withdrawn from the public discussions. The time has come, very clearly, for a change in outlook, and I believe the timing is quite appropriate to move back into it. And as we do, this will oblige us to entertain the discussions with the general public, its representatives, and the governments, be they federal or provincial. I recognize full well that health care is a provincial matter, but I think we need to get all of the components and all of the participants discussing these issues. The medical community is certainly more willing than ever to get involved in these discussions.

Mrs. Karen Redman: Ms. Jefferson, you talked about the role of the critical care nurse in approaching families in a sensitive manner, and the fact that you're caring for a patient, and depending on the outcome, perhaps critical care staff work is working with two hats on. Has your organization looked at who the best people are? Are the critical care nurses the best people to approach the family of a potential donor?

Ms. Rosella Jefferson: As far as the CACCN looking at that as a research program or investigating it formally is concerned, no. We certainly have some thoughts and discussions around that.

We're aware of the current notion of organ procurement officers. One of our responses to that is a bit of a worry. As nurses who are taking care of the patient, we would want to be involved in those discussions. I think the relationship between the organ procurement officer and the critical care nurse would be very important. It would be important that it be a collaborative relationship and one that utilized the relationship between the nurse and the family.

Sometimes that relationship isn't going to be of that long a standing. Sometimes it is. It depends on how long the donor was in the ICU prior to becoming brain dead.

Mrs. Karen Redman: Ms. Nield, in your final comment you talked about a call to action, and it's really nice to hear that it isn't just a call to action for the federal government. It's for all involved stakeholders.

Ms. Sharon Nield: Thank you.

The Chair: We'll have a very brief question from Mr. Vellacott.

Mr. Maurice Vellacott: I apologize that we didn't get you in before, Rosella, in response to my question of whether as a critical care unit nurse you are in favour of loosening or liberalizing the definition of brain death or whether you are comfortable with it as it is now.

Ms. Rosella Jefferson: Thanks for asking. I was having some thoughts as we answered.

I'm comfortable with the current definition of brain death being the standard for organ donation, and I guess my comment about changing that or taking it to another level would be that I think what you're hearing here is that there are some problems with education, awareness, and comfort levels in dealing with brain death, and there are a lot of ethical issues around that.

If you take it to a different level of cortical death, I think you'll just elevate that whole discussion and the uncertainties and open up an even greater need for debate, discussion, and collaboration around how that would look. It's one thing to negotiate how you're going to have a family deal with death at the current status, but with that, I think it would become very much more complex.

The Chair: Thank you.

I have two very brief questions to close off. I wonder if I could come back to Dr. Brazeau, because you raised another area when you spoke about the role of physicians and specialists in the community, and the thought that crossed my mind, of course, was the question of accountability. I think that's where the public is for virtually everybody, physicians included. It was refreshing to hear your response to a self-imposed question about what to do in that kind of situation.

Let me give you a very specific example, and I ask you this for the purposes of clarification. In the practice of kidney transplants, if a surgeon is questioned in his or her practices, I guess the appropriate place to go would be to the provincial college that provides the accreditation. But I'm wondering who would, or should anyone, provide a national focus for transplant practices?

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Dr. Michel Brazeau: Would you formulate that question to me one more time? I'm listening to each one of the words in the question.

The Chair: That reminds me of some of the things people accuse Americans of, that whenever you go to see a physician you have to have a lawyer beside you. This is the first time that somebody has actually been paying attention to what I've been saying, so Dr. Brazeau, thank you very much.

In the question, on issues where someone might have a complaint against, for example, a kidney transplant surgeon, the first step, or the place where one could look for accountability or responsibility, might be at the provincial college. But I'm wondering whether there should be, and if so who would provide it, such a focus at the national level for transplant activities?

Dr. Michel Brazeau: Before opening up on the national focus, and I think we have to regularly look at questions such as these at all of the levels, I would suggest that the first appropriate place where we would look is not the college of physicians and surgeons of a province. My own experience as the past president of a medical board in a teaching hospital, president of an evaluation committee in a teaching hospital, is that there are already mechanisms in place in the hospitals themselves to deal with these issues. There are peer review committees, there are ethics committees, and there are also identified champions within the community, generally within these very institutions. So the first place to look, when you're confronted with an issue such as this, is very often at the hospital level itself.

If the issue does not get resolved there, then I think the next appropriate step is in fact the college of physicians and surgeons of that province. The college has the mandate of protecting the public.

Should we have something that goes beyond that? I think we're finding that, by and large, in all spheres and aspects of health care we need to get our experiences, models, and approaches together. None of us alone ever has a clear perspective of reality. We have a very biased one, and clearly it's by bringing together the different elements of the puzzle through the different perspectives and appropriate discussions of these that we generally make headway. So I'm clearly always supportive. In the medical profession we also go beyond. There are no frontiers ultimately; we always go beyond. We go to the overall international community on some major issues, and we would not want to be stopped by specific frontiers.

However, to see a national organization as the place where we'd go to knock to resolve all of our daily problems, clearly I don't think that would fly very well. So a graduation of resources that we can look to, yes. For the specific problems, I think it's generally better to keep those close to home, and there are already opportunities within the hospitals themselves to deal with these issues. If they're not adequately dealt with there, clearly there is a responsibility of the provincial colleges to deal with these issues. But I certainly would not want to see this as the point where we stop. In science, in medicine, we always have had the opportunity and the benefit I think of being able to go beyond.

The Chair: Thank you, Dr. Brazeau. I returned a compliment by listening to every single word you said as well.

I have one last question for Liz Anne Gillam-Eisen. In the previous panel, and in other panels, we've talked about informed consent and the question of registry. I think you raised this, and I'm wondering whether names placed on the registry, at least from your perspective, constitute informed consent.

Ms. Liz Anne Gillam-Eisen: From my perspective, I don't believe they do. I think the information that needs to be provided is all the information surrounding brain death, the diagnosis of brain death, how it is actually diagnosed, as well as what organs and tissues can be donated, as well as the length of time it takes for the procedure.

If you look at signing the back of your driver's licence, or even the registry forms, they're two-sided. All that information is not on there. For medical procedures to go forward we need informed consent. That means information needs to be shared either with the individual or, in the case of the individual who is not able or is not there to receive that information, with their next of kin. I don't believe people participating or talking about their intent have enough information to have a truly informed consent. I believe the information they would like to be a donor is very important. This is something they feel is important, but it's not a truly informed consent as hospitals need to go forward with medical procedures.

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It's not a huge issue if they know what their family's wishes are. In the hundreds of families that I have dealt with, I've had only two families actually go against what they knew their wishes to be. However, in one case, it was because of the donor themselves. When I explained the process, they said that person would have been uncomfortable with that. They didn't realize that they had to go to the operating room on a ventilator, and if they had known that, they would not have consented to be an organ donor. They didn't understand brain death.

The Chair: Thank you very much for that explanation.

I'm sure all committee members have found this a most informative session. Every session seems to be much more informative, probably because our awareness levels get a little thicker.

I want to thank each and every one of you for the time and the patience you took and the frankness with which you addressed all of our responses. On behalf of all committee members, thank you very much. I can assure you that it's going to form an integral part of our deliberations.

The meeting is adjourned to the call of the chair.