HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Thursday, March 11, 1999

• 0914

[English]

The Chair (Mr. Joseph Volpe (Eglinton—Lawrence, Lib.)): Ladies and gentlemen and colleagues, thank you very much.

Pursuant to Standing Order 108(2), a study on the state of organ and tissue donation in Canada resumes its hearings.

This morning we are pleased to have in our midst a colleague from the province of British Columbia, the Honourable Penny Priddy, who is Minister of Health in the province of British Columbia. She's accompanied by another colleague at the provincial level, Mr. Ed Conroy, who is a member of the Legislative Assembly of British Columbia. With them as well is Mr. Bill Barrable, chief executive officer of British Columbia Transplant Society.

• 0915

We don't have a name tag for you.

Hon. Penny Priddy (Minister of Health, Province of British Columbia): I will introduce him.

The Chair: Madam Priddy, you can introduce him.

Our usual practice is to go for about five minutes for each of the presenters, and then go into question and answer. I don't have a clock here, so we're going to be flexible.

Madam Priddy, the floor is yours. You'll probably want to introduce our other guest as well.

Ms. Penny Priddy: I will do that, and thank you very much for both the invitation and the opportunity to appear before the committee this morning to speak on what is really a critical subject of organ and tissue donation in this country.

I will now do that introduction. With me is Dr. Neil Fatin, who is with the Ministry of Health in British Columbia and helps me in my work with the B.C. Transplant Society.

We don't all go to standing committees, but I've chosen to come here to this committee because I believe British Columbia has an important story to tell about our experience with the B.C. Transplant Society. We think it is a model that can be used by other provinces and certainly by the federal government, and we'll be of course encouraging you to look positively at doing that.

I have about five areas I'm going to cover. I am conscious of your time admonishment to us and your comment about flexibility, so I appreciate both of those. I will cover those areas as briefly as I can.

One of those I will speak briefly about is the B.C. Transplant Society, because you will be hearing more from Bill Barrable, who is the chief executive officer for them.

I want to comment very briefly on the impact on families, the cost issues, the issues around how wait times can be reduced, and the promotion and education that I believe needs to be done.

I'm not going to repeat for you all those things that I expect every other group appearing before you has told you about Canadian statistics and so on. But let me set the context from my province, which is British Columbia.

In British Columbia we have about 450 people on the wait list for solid organ transplant, and 12 of these are children: six little girls and six little boys. For any of us who have children or grandchildren, both of which I have, or have children who are close to us in our extended families, the idea that there are six little girls and six little boys waiting for an organ transplant is a very hard thing to actually go to sleep at night knowing.

So we believe being able to increase the organ donation rates will make an enormous difference in both saving lives and improving the quality of life for patients, and we think it will reduce health costs in the country over time. I don't think that's an insignificant issue for all of us, certainly as health ministers, including federal, who are faced with the kinds of financial challenges we all are. Being able to reduce health costs is important.

Let me give you an example from my province. It costs about $50,000 a year in British Columbia to maintain someone on renal dialysis for a year. A transplant costs $20,000 for the surgery, and then just over $6,000 a year for anti-rejection drugs. So already there is a huge health care cost that can be saved. Secondly, the faster we can get someone an organ transplant, the less ill they will become. They won't have to be hospitalized for long periods of time, and again there's a health care cost issue.

That's not the only reason we would do it. We'd do this because of the personal trauma for patients, but it is not insignificant to recognize there are cost issues as well. I believe organ donors are being lost because we don't have a clear, simple and unambiguous national system for organ donation, and that's what I hope you are hearing from all groups, that this is what we need.

Again, to keep the context in my own province, we have taken steps to try to address that in British Columbia. As I say, you will hear more, but we have the British Columbia Transplant Society, which is the only integrated organ transplant organization in North America.

• 0920

This organization, funded by the provincial government, manages all aspects of organ donor health issues. It maintains a donor registry. It maintains a waiting list registry. It actually has the dollars to pay for the surgeries in hospital. It does all the outreach to patients after their transplant surgeries. It provides the support to parents. It's an integrated system, as opposed having a hospital here, another clinic there and a doctor over there, where people don't have a smooth journey through the system. It's already a difficult enough journey. So in our B.C. story I think we have taken steps to be able to do a better job for patients in British Columbia.

One part is the cost issue I've already spoken about, and the other issue is reducing wait times. If we had a national registry or database of donors and a national database of people on the waiting list, the chance of getting a match earlier would be tremendously increased. Some people say maybe a national registry isn't the way to go and it isn't the best way to make a match, but let me tell you briefly about Shane, who's now five years old.

I was with him on Tuesday. He waited 15 months for a liver transplant. Imagine holding a six-month-old baby who needs a transplant. If his mom and dad, as a result of a national registry, only had to wait 14 months, 13 months or maybe 6 months because there was a larger system to be able to find a match from, we would have been able to reduce the tremendous trauma they have suffered.

I haven't been in that position and I wouldn't speak to it, but I would think if this were your baby, every week you waited would feel like a month; every day you waited would feel like a week or more. So a national registry has the potential to reduce wait times.

Third, in British Columbia we've only been able to launch our registry through a very aggressive outreach campaign of promotion and public education. After about a year, we have 180,000 people as potential donors on the database, but that only happens if you do very aggressive marketing on this with corporations, schools and institutions in the community, many of whom then becomes partners and do that work in partnership with the B.C. Transplant Society.

We have a radio station, CKNW, whose call numbers are 980. They ran a campaign to get 980 people signed up. We need those kinds of partnerships to do the promotion and education part. We can have a registry of people waiting, but we have to do active promotion to have a larger database of people who are potential donors. That's an important part as well and we'll be doing more work around reaching out.

I've talked about wait times, cost and promotion. The other important thing is staff training. We've just passed legislation in British Columbia, which will take effect April 1, to make it mandatory for all hospitals to notify the Transplant Society when there has been a death or when there might be an imminent death, so the data bank can be accessed and we can take away some of the trauma for a family that's already grieving.

We have donor cards that indicate whether a person has registered to be an organ donor or not. Even at 3 a.m. the person at the hospital, who would obviously have security clearance, can access the Transplant Society's data bank and get a faxed copy back that shows the wishes of the family member. We lose a lot of donations because it is very hard to ask a family at a tragic time to make that decision. We lose probably half of the potential donors in that way.

• 0925

So we're making it mandatory and also providing training to staff. As you can imagine, approaching a family at such a time is incredibly difficult and staff need training support to be able to do that. Those protocols are very clear for health care professionals who seek consent from suitable donors.

I want to stress that this legislation doesn't in any way interfere with an individual's or a family's right to refuse consent for organ donation. In fact, an individual who is clear they don't want to be an organ donor, as it says on the card, has the option of registering those wishes with us as well. That also makes it very clear for people.

In conclusion, on behalf of British Columbia, I urge the federal government to immediately coordinate a national organ donor strategy and partnership with the provinces. It will shorten waiting times and reduce costs. It will need active promotion and staff education. But the most important part—because you've heard all the statistics—is the faces of those children and those people who are waiting for donor transplants and miss opportunities because we don't have a system in place. So as you hear all those statistics across the country, I would urge you to try to put a face on every one of the numbers, because that face is a family waiting for that.

Bill Barrable will talk about some of the very specific recommendations around standards and so on for transplant centres. I don't think you need to hear that part from me.

We have an opportunity in Canada to be a world leader in this. British Columbia wants to be part of that with you.

I thank you for the time you've allowed me, and will accept any questions you have.

The Chair: We'll get to those very soon. I thank you for your presentation. Boy, you are almost bang on five minutes, so I want to thank you.

Our usual practice is to go to some of the other witnesses next. So if you'll allow, we'll go to them first and then we'll go to questions and answers.

Ms. Penny Priddy: Of course.

The Chair: I believe, Mr. Conroy, you have a short presentation for us as well. Go ahead.

Mr. Ed Conroy (Member of the Legislative Assembly of British Columbia, New Democrat Government Caucus): Thank you for the opportunity to be here. I'm pleased to join our Minister of Health, Penny Priddy, in urging the Standing Committee on Health to recommend that the federal government work with the provinces to develop a national organ donor system.

I know from first-hand experience the enormous stress on individuals who are waiting for a suitable organ, and on their families. It's a great blessing to have my life prolonged and my health restored because other British Columbians and their families consented to organ donation.

I was one of the hundreds of British Columbians on a waiting list for organ transplant surgery 16 months ago. I've had two liver transplants. I had one in the spring of 1996, which my body rejected, and I had another one about 16 months ago in the fall of 1997. I know first-hand the difficulty one goes through, not only as an individual, but what their families have to deal with in circumstances like this. I sit here now weighing about 220 pounds, but 16 months ago I was 160 pounds and about three days away from death. Then, for a miraculous reason, all of a sudden a suitable liver happened to arrive, which saved my life.

Needless to say, I have a huge commitment to having this issue resolved in some way. I know right now as I speak there are people all over Canada lying in beds as I was, a few days away from death, who have families and children—I have four—waiting for organ donations to come through to save their lives. And many of them aren't going to receive it, because we just don't have the system in place in our country that maximizes the availability of organs for transplant. That's why I'm proud of the leadership role British Columbia is taking to increase the rate of organ donation and decrease waiting times for organ transplant surgery.

• 0930

I believe the computerized organ donor registry is a key to a more effective organ donor system. As a model, the British Columbia organ donor registry presents some clear advantages. First, it establishes legal consent under the Human Tissue Gift Act of British Columbia. It is accessible to all citizens, not just to drivers, like some systems where consent is indicated on your driver's licence. Its database is accessible to all hospital intensive care unit staff. It can be updated at no cost to the registrant, and it is supported by a public education and marketing campaign.

By expanding this model nation-wide, I believe we can make real progress in addressing the transplant gap in Canada. We can ensure that all potential donors are identified, and thus reduce waiting times for many British Columbians and other Canadians who need a lifesaving organ transplant operation.

I applaud the thousands of British Columbians who have registered their intent to donate with the British Columbia organ donor registry and other Canadians who have made their wishes to donate known through whatever mechanisms are in effect in their provinces. But we need to make more Canadians aware of the urgent importance of organ donation and we need to develop a system for coordinating organ donations at the national level so opportunities to perform lifesaving transplant surgery are not lost.

Just before I had my second transplant, when I was really quite ill, a liver became available to me. I was in the hospital in Vancouver and they'd prepped me for the surgery. I remember it very well, because you have to take this horrible stuff that's the worst part of the whole procedure. I'd done that, and the doctor came in and said “I'm sorry, but we can't do your surgery today because the blood bank doesn't have enough blood.” It's not a criticism of the blood situation. We've been through that. It was in turmoil at the time.

It was very fortunate that B.C. and Alberta have communications, because when I couldn't receive that particular liver it went to Edmonton and was utilized in Edmonton. So the organ did its job. I was very, very grateful for that. It makes me think of the opportunities that would accrue through a national organ donor system if we were to have even more mechanisms in place.

As a transplant recipient who came very close to death as I waited for a suitable organ, I'm keenly aware of the need for increased donation. And as a member of government I'm determined to lend my voice to improve the chances of other British Columbians and other Canadians to receive this gift of life.

I came all this way from British Columbia yesterday for these brief few minutes, for which I'm very, very grateful. Organ donation has come so far in the last number of years in terms of its availability to people as a lifesaving measure. It seems to me, as we speak here today, that we're not keeping pace with the situation in our country. Organ donation and organ transplant is very, very successful. I'm sure that all of you now, if you don't know somebody personally, certainly know of somebody who's had an organ transplant of some kind. I think it's critical at this particular point in time that Canada get a system of dealing with donations and transplants that meets where we happen to be at this particular point in time.

In closing, I just want to say thank you very much for this opportunity to be here. I wish all donors and recipients good luck. Thank you.

The Chair: Thank you for sharing your experience with us.

I guess at this point we'll go to Bill Barrable, who's going to give us a more detailed description of the way the system works. Bill will be using some of the audio-visual equipment as well.

• 0935

Colleagues will see from the items circulated that we don't have a translated copy, but we have the agreement of members around the table to circulate that anyway. So I want to thank members from the Bloc and others who have consented to allowing that to go through, notwithstanding the fact that we couldn't get the material translated in time.

The floor is yours. We'll be listening attentively as you utilize the material and give us your presentation.

Mr. Barrable.

Mr. Bill Barrable (Chief Executive Officer, British Columbia Transplant Society): Thank you, Mr. Chairman.

I would like to thank members of the committee for inviting a representative of the British Columbia Transplant Society. Our minister, Penny Priddy, and Ed Conroy have both described the organ donor registry very eloquently, so I won't focus on that. I'll leave the video to expound on how that works.

In Canada there is no system to support organ donation and transplantation. When you look at jurisdictions in the world that have done a very good job in this area, like Pennsylvania and North Carolina, a variety of states in the U.S., and Spain, they have one thing in common, and that is that they have a system in place and they have accountability for hospitals, for hospital performance and organ donation. It's very critical. We can put an organ donor registry in place, and that's a very important part of a larger system, but the first and most important stage in ensuring that every family is given the option of organ donation is to have a system and accountability framework in place in hospitals to ensure that every potential organ donor and every family is offered the option of organ donation, that it's not discretionary, that this is an important public health issue and deserves to be recognized as such.

Right now we have many of the characteristics of a cottage industry in organ donation in hospitals. The work of this committee and the very fact that it's meeting and discussing this issue I believe is a positive recognition that this is moving from a cottage industry into being recognized as the important public health issue that we believe it is. So I know that there are a lot of Canadians, particularly those waiting for transplants, who are looking to this committee for leadership and really counting on you and the key people in the system to turn things around. We're very encouraged by the fact that you're sitting and meeting on this issue.

As the minister has alluded to, British Columbia has introduced new regulations to support organ donation. These are modelled after a system that was introduced in Pennsylvania in 1994. Since that time, since this act was passed, called Pennsylvania Act 102, the rate of organ donation and transplantation in Pennsylvania has increased 50%. This ensures that all deaths are reported to the organ recovery program. The regulations from the Transplant Society are appended to our submission to give you an understanding of how we have adapted those for British Columbia.

We've taken the best aspects, we believe, of what Pennsylvania has done, and other programs in the U.S., like North Carolina, where they've increased their organ transplantation, and tried to adapt them through the leadership of our government into regulations, which we hope are passed by the end of this month. We will then move quickly to implement that system so that we will have a full continuum, a full process, from the identification of potential donors, diagnosis of brain death, referral to the organ procurement organization, the B.C. Transplant Society, and then an inquiry to the the organ donor registry to determine whether that potential donor has registered their consent. If they haven't registered their consent, then trained individuals, nurses, social workers, pastoral care workers, will approach the next of kin in the hopes of achieving consent.

Our research suggests that both in British Columbia and in Canada, roughly 50% of all potential organ donors are not identified within the hospital environment. And without a system, that's not going to change. We could put an organ donor registry in place, and if we don't take care of that first step the registry is not going to have a tremendous impact. We need to have both. We need to have that system within the hospital in place and we need to have the public education and the organ donor registry in place to involve the public.

• 0940

One of the positive aspects of the registry's marketing and public education campaign would be that it would serve as a platform to get other key messages out to the public in a positive way. We need to affirm the living aspects of organ donation and transplantation, not just the post-mortem aspects. I know this committee has heard from various individuals on brain death issues.

I think a public education campaign to support a national registry could also address some of the myths regarding the way individuals are treated in hospital as it relates to organ donation. I think there are many positive opportunities there. The registry can serve as a public education platform and a hub in a wheel to get key messages out to the public, into the public domain. Together, that public education campaign around a registry, and legislative or standardized approaches to organ donation in hospital, will give Canada a system.

We can go from one of the worst scenarios in the western world to the best. We can go from worst to first. We would be one of the very few jurisdictions in the world, if not the only one, that had both a national registry and a national program to ensure that what happens in hospital leads to the families being put in control and being universally offered that option. If they're not offered that option of organ donation, then the decision is being made on their behalf, and that's not only illegal under the Human Tissue Gift Act, it's also unethical. So let's put a system in place to make sure that happens.

If I could, I would also like to refer to a third recommendation in our group. In addition to a national registry and legislation that would be provincial under the Human Tissue Gift Act to require notification or referral, the third key recommendation we have is that there be a national body established to regulate organ donation and transplantation. There are no approved standards for transplantation in this country. Frankly, that's just not good enough. We can do a lot better than that.

There are models out there we could look to as perhaps a template to establish such a body, like perhaps the Canadian Blood Services, with an independent board that has a national mandate to ensure that the standards are in place. They don't have to do all of the work, but we need to make sure that somebody's leading the way. This is something that's quite doable and I would ask that the committee consider it in the future.

Finally, before we go to the video, I would just like to make reference to some of the appendices. We have a number of organizations in Canada, voluntary, public and private sector, who have expressed an interest in supporting a national effort for organ donation and a national registry. There's a lot of money already put into supporting organ donation. Unfortunately, it's not focused perhaps as well as it could be.

There are millions of dollars spent as well every year by the provinces to buy corneas and tissues from the United States and other jurisdictions because we don't have a system in place to support that. The organ donor pool for tissues and bones and corneas is huge. There's no reason we should have to buy these tissues from the United States when we could be spending the same money to organize a system in Canada so we could eliminate the waiting list.

When Pennsylvania introduced legislated, mandated referral, they were able to eliminate the cornea waiting list in Pennsylvania. They now sell those surplus corneas to other programs across the United States. We can do that. There are millions of dollars spent every year by our governments buying these tissues from the U.S. Let's spend it in Canada, putting our own system in place.

I don't think we need a tremendous amount of extra money to solve this problem. We just need to get our act together and organize ourselves and reallocate those dollars. Let's spend them in Canada.

Having said that, again I'd like to thank the committee for inviting us. I guess now we could probably move to the video, with your permission, Mr. Chairman.

The Chair: Absolutely. Thank you, Mr. Barrable.

• 0945

[Editor's Note: Video presentation]

The Chair: Okay, thank you very much.

We'll go immediately to questions. I know our colleagues have been waiting to ask the minister and the other panellists a series of questions. We'll begin with Mr. Reed Elley from the Reform Party.

Mr. Reed Elley (Nanaimo—Cowichan, Ref.): Well, it's a real pleasure to welcome fellow British Columbians to the committee today. It's also a real pleasure and encouragement for us, I think, to see a group of people who have come as a team with something in place. I'm not surprised about British Columbia in this regard—I think we're running out ahead in a lot of ways—but certainly it's great to have you come and to present the kinds of things that you have today as an example for the rest of the country. I think this is something that could work right across the country.

• 0950

I want to explain a little bit about my own personal situation. I've done this before, but I think it brings the whole thing into more reality for us. It's quite possible that my daughter will be the thirteenth child on your list soon. She was born with one kidney, and that kidney is diseased. We know the steps that take place in something like this. If it goes into failure, of course, it's dialysis, and then we're waiting for that one kidney to show up so that she can have a kidney transplant.

By the way, I hope you won't mind my saying this, Madam Minister, because it's a bit of a plug for the Cowichan District Hospital, but I sure would love to see that new dialysis unit get up to speed. It's only working at a third of capacity. And it's not only my own daughter I'm concerned about in that regard, but also the people in my riding who still have to go to Victoria. It's great that this is in the Cowichan hospital. I just hope that even with the cutbacks and the present concerns that we all have about our health care system across Canada—largely because of federal transfer payment problems, of course—we can get these kinds of things solved, because they're a matter of life and death.

However, I am quite interested in kidney transplants and the availability of kidneys. It continues to boggle my mind. Madam Minister, you have said in your report that there are 449 British Columbians waiting for solid organ transplants, and that 420 of those are for kidney transplants. Here's a transplant situation that, to me... there shouldn't be 420 people waiting for kidneys. It's not as if we have to take them from cadavers. Families can donate them. Why do we have such a problem with kidney transplants particularly? How do we fix that problem if it's one of the biggest problems in terms of waiting? I would ask that question of either you, Madam Minister, or anybody on the panel, but I'd like to ask that first question.

The Chair: You won't get much time for a second one.

Go ahead.

Ms. Penny Priddy: Thank you.

Actually, I will turn it to Bill in a moment, but I do want to comment both on your question and on your comments. By the way, there is money for the renal dialysis unit to run at 100%, so you can know that with some comfort. The premier and I were just there the other day, actually.

There is a growing understanding of the fact that you can actually donate a kidney within the family. Last year there were 43 kidney transplants done in British Columbia with kidneys from family members. Again, as I said in my earlier remarks, the whole idea of promotion and public education is a particularly important one.

I want to comment on your question and just expand it a bit if I might, because one of the reasons your work is so important on this committee is that we are going to see a growing need for transplants for three reasons, regardless of the growth of the population—and let me do the kidney one first. We have a very high rate of diabetes, as we're discovering or have known, particularly in aboriginal communities. It's diabetes that very often prompts the need for a kidney transplant. We are seeing far more fibrocystic kidney disease. Maybe forty years ago that person wouldn't have lived and therefore wouldn't have had children, but we can do that now, so we are seeing a growing number. And dare I raise it, but with hepatitis C, we're going to see a growing need for liver transplants in this province as well.

It may not be the only one, but the last one I would mention is the following. When I graduated from nursing about 35 years ago now, if children with cystic fibrosis lived to be 16, 17 or 18, they were doing extraordinarily well. Of course, people with cystic fibrosis today are living not only to young adulthood, but middle age, and those are the people who most require single lung transplants.

So in many ways, because we're so much better at medicine, what this means is that we're going to have growing need. It's not just a population need, but because of some of those illnesses.

Bill, you might want to comment further about the kidney part.

The Chair: I'll give him a chance a little later, though, Madam Priddy. I have to go on to the next question, but you might find an opportunity to piggyback on others.

Madame Picard.

• 0955

[Translation]

Ms. Pauline Picard (Drummond, BQ): Welcome, Minister. We are honoured to have you and your colleagues here today.

You spoke about a coordinated strategy and partnership with the provinces and about the importance of establishing a national registry. Do you have a definite plan regarding this national registry? Would you see it as an independent body? Would the federal government play a leadership role, or do you think the registry should be run according to standards similar to those in place for the blood service, for example?

[English]

Ms. Penny Priddy: In this case I think I will ask Bill Barrable to comment.

Mr. Bill Barrable: Merci. I would suggest the model that has been set up for the Canadian Blood Services could serve as a model for transplantation in that they have a voluntary board that's accountable both to the public and to government. And they have an authority that goes along with that mandate to ensure that minimum standards are met and that they're enforced. I think that's something that could only benefit transplantation.

[Translation]

Ms. Pauline Picard: Do you have any results regarding the system established to raise awareness about organ donation? Do you have to have a long-term awareness campaign, or will a short campaign suffice? Has public response been favourable? Can you assess the impact of this campaign at the moment?

[English]

Ms. Penny Priddy: I think they're extremely favourable. What happened in British Columbia in the past and perhaps in other provinces is that you put a little sticker on your driver's licence and that was an indication. There are all kinds of complications with that, particularly at the time of a death, where a family member might say that really wasn't consent or they really didn't understand at the time, or whatever.

The fact that in just over a year's time 180,000 people have taken the trouble to get the form, to fill out the card, to put it in the envelope and send it back, which is certainly more trouble than just putting a sticker on your driver's licence—it's more efficient, though—says to me it's extraordinarily successful.

But I would say to you that it does take a sustained effort to do that. You can't just do a campaign and then expect it will produce all the results you need. Bill Barrable has done a superb job with this, but that's why those corporate and other kinds of partnerships are so important. We have one with the David Foster Foundation.

Lots of corporations are becoming involved in partnerships. It does have to be a sustained outreach effort and we do have to involve corporate partners and all of those other people who can get that information out.

[Translation]

Ms. Pauline Picard: Thank you very much.

The Chairman: Ms. Caplan.

[English]

Ms. Elinor Caplan (Thornhill, Lib.): I have several questions. I hope there will be time for a couple of rounds.

First I'd like to welcome you and congratulate you for coming forward with a very specific proposal. It's very helpful for the committee.

I heard a couple of words I'd like you to expand on. One was the need for accountability through the regulations and the legislation you brought in in your province. I'd like to know what the accountability measures are that you've brought in and that are becoming effective on April 1. Also, are you using accreditation as part of the accountability mechanisms? And are there other partners in the accountability provisions?

• 1000

Ms. Penny Priddy: I thank you for the question. Since we came as a team, I'll ask Bill to answer this one.

Mr. Bill Barrable: Thank you.

In terms of accountability, you can see in the appendices there are the draft regulations. In terms of hospital accountability, all hospitals with ventilator capability—and there are about 40 to 45 of them in British Columbia—will be required under the Human Tissue Gift Act—and there are potential penalties in the Human Tissue Gift Act such as fines to hospitals. I don't recall the amount of money, but there are fines if an organization does not comply with the act. So there is a measure of accountability, or at least a penalty if the hospital doesn't meet its requirements to refer all deaths and to ensure that someone who has been appropriately trained approaches the family. Those are some of the mechanisms for accountability.

In terms of accreditation, there are national standards through the Canadian Council of Health Services Accreditation. I know there are some initiatives underway to see that the accreditation body puts into place standards that ensure that hospitals have protocols and a policy in place that support organ donation. That doesn't happen necessarily right now unless the hospital buys into it on its own. There are no external requirements for them to do that, and that is the major gap in the system. So I see that this could be a very effective complementary mechanism that could be used to create that accountability framework.

Ms. Elinor Caplan: Does your accountability framework include recording of the data of numbers of transplants, organs available from hospitals, and making that information public?

Mr. Bill Barrable: Yes, it does. The regulations themselves stipulate that the hospital must keep records and that these can be evaluated periodically as a delegated responsibility by the Minister of Health.

Ms. Elinor Caplan: In your call for a national agency, what I've heard is that the B.C. model is working well. The video showed how the card is scanned in and then it's sent to the hospital at the time, and it helps in approaching the family to see an actual signed card by the loved one, so the issues of consent are clear.

Are you proposing the linkage of what each province is doing in a compatible system so that you'd run your own; it wouldn't be imposed by a national agency to require you to change what you're doing? If you have what you think is working well, and if Quebec for example has a sticker on their driver's licence, and as long as there was a database that could be linked, different approaches could then make information available. So if someone from B.C. was travelling in Quebec and unfortunately had a serious accident, the information could be sent to the hospital in Quebec, or vice versa. I'm only thinking of those two because we know there are mechanisms that both provinces believe are working well.

Ms. Penny Priddy: I think that is correct. I don't think the federal government—and we could all have the debate about when it's ever been discussed before—would impose a system that says you must do it this way. We think ours is the best model, but we're from British Columbia and of course we do. I think we would not suggest the federal government impose a method, but we are suggesting certainly the importance of national federal standards around the regulation and standardization of protocols and standards of treatment.

As an example, my premier and I were at the Children's Hospital and there was a baby being sent away—out of province, actually, to the States—for a liver transplant. So the premier asked why we have to do that. The answer was that we don't do enough of them to ensure that there's a quality of skill.

So part of it is those national standards, but the other part is the database part. If every province had whatever system they thought would work—and we suggest ours—and if there were a national database, you would then expand the number of matches. That is the position we would be taking.

• 1005

The other part, because in some provinces this may be an issue and you've heard about it from people in your presentations, is that when we did our consultations around the human tissue regulations you referred to, we didn't talk just with health professionals, we talked with religious leaders and with people from a whole variety of cultural backgrounds where this might be an issue to ensure it was as rounded as it could be. I think that would certainly be an issue that you would want to have occur in other provinces as well, so the consultation would take place in each province for those people who have religious and cultural concerns about this, or have needs to be met.

Ms. Elinor Caplan: I'd like to correct the record if I could.

[Translation]

I apologize, Ms. Picard. In Quebec, the sticker is on the health- insurance card,

[English]

not the driver's licence.

The Chair: Merci, Madame Caplan.

Mr. Robinson.

Mr. Svend J. Robinson (Burnaby—Douglas, NDP): Thank you, Mr. Chair. I too want to join in welcoming the witnesses. Obviously I'm particularly proud as a British Columbian and, if I may say so, a New Democrat, of the leadership of our government on this issue, Mr. Chair—

The Chair: Yes, you may say so.

Mr. Svend Robinson: I want to make it very clear that I'm here today... Although I'm not a regular member of the committee, my colleague Judy Wasylycia-Leis is a member and has been very supportive of a national register. Certainly I speak not just on her behalf but on behalf of all of my colleagues in thanking you for your leadership and for sharing that with the committee today. It's good to see old friends here, in particular Ed Conroy, who is—I think most members know—also a fellow elected representative in the B.C. legislature.

A couple of my questions have already been answered, so I just have two questions, Mr. Chair.

The first is to the minister. This sounds so eminently reasonable and logical, that there should be this kind of national coordination, that I guess the obvious question is what barriers you see currently to this going ahead. You sit at the table with other health ministers, presumably, from the provinces and territories—I don't know, they may sit at the table as well. I assume they do. You sit with Allan Rock, the federal minister. I wonder if you could share with the committee your perception of where the barriers might be, because presumably this committee, in going forward to make recommendations, will want to be aware of any particular areas of concern around the table.

Then my second question—maybe I'll just put the two, Mr. Chair. This isn't an area I'm personally familiar with—I always had my sticker on my driver's licence and sent in my card in British Columbia—but I'm wondering what the practice is with respect to individuals who have sent in their card and said, yes, I want to be a donor in the event of circumstances arising in which that would be appropriate. They send in their card, it's very clear they've given their consent, and then the family intervenes and says, well, whatever they said, we don't feel comfortable with this. What happens in circumstances like that? Are you able to proceed to respect the wishes of the donor, or is the family able to say no, whatever the donor said, they don't support this?

The Chair: We haven't given our witnesses much time to respond. Madam Priddy.

Ms. Penny Priddy: I will give a very quick response to the first one and ask Mr. Barrable to respond to the second question, because I think he can do that quite competently.

I'm not sure I've heard great barriers raised. I think with this it has been a matter of getting it high enough on an agenda for it to be addressed across the country. And maybe because not everybody knows someone who needs one, it's not on the top of the mind with a lot of people who think about the health care system. So I don't think there are huge barriers. I guess provinces would say they don't want something imposed on them, but we say that about everything. So that would be a concern.

The other thing is that people want to ensure that the confidentiality issues are maintained, and each province would need to reassure its public that only certain people have access codes to get into the database and those kinds of things. But I don't think there are big barriers. I think the issue is just the political will to drive this one higher on the health care agenda.

Bill.

Mr. Bill Barrable: In regard to your second question, that's a very good question to begin with. It's something that has arisen in the past, where family have overridden the wishes of their loved ones who have indicated either on their driver's license or by some other mechanism that they wanted to be a donor. That has happened. Our research has shown there are a number of occasions when that has happened.

• 1010

There are some prevailing myths within health care that if the family's wishes aren't followed a lawsuit may ensue. Legally, however, the reality of it is that under the human tissue gift acts in each province it is the right of the donors to have their express executed wishes followed. One of the concerns we had about the previous driver's licence system in British Columbia—and they do vary from province to province—was that it may not have constituted formal legal consent. So we've had situations in the past where the driver's licence was present, but there were occasions when it was allowed to be overturned by the family.

One of the reasons we established the new registry was that it met all the requirements of legal consent so we could fulfil the obligations of the Human Tissue Gift Act. However, the key in the future is going to be not only public education around this but professional education, so that health care providers understand it has the same force as a living will or an advance directive, and it should be respected.

Again, if we were to have a public education campaign around a national registry or virtual registry, that is a message that could go out to the public and help us to ensure that the law is followed, that the wishes of the donor are followed, and that the grieving families are treated with the utmost sensitivity. It's the responsibility of the health care professionals to care for that grieving family in a very difficult time. It's important that this message get out so the families understand that, and so they can be treated with the most sensitivity in the hospital setting.

The Chair: Thank you.

Before I go to the next intervener, Madam Priddy, I wondered, in light of the issue of confidentiality you've raised, whether you involved the provincial privacy commissioner when you set up the system in B.C.

Ms. Penny Priddy: Yes, we did.

The Chair: Thank you.

Madam Ur.

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

I can see why the registry is successful in B.C. and will continue to be with the minister at the helm. Your enthusiasm is shown well here this morning.

I have a few questions to ask.

Could you outline for the committee the cost to set up this registry, and its maintenance and evaluation?

Ms. Penny Priddy: I will, actually. But I'll say one thing before that. We do have copies of the brochure and the consent cards for everybody if you would like one afterwards. Having said that, I'll ask Mr. Barrable to answer this question.

Mr. Bill Barrable: In terms of the cost, it was split with government, and the initial contribution for the technology and the like came from government to get it going. That was somewhere in the neighbourhood of $250,000 to $400,000. In terms of the public education—the advertising, marketing, and development of a strategy—that was the majority of the cost. The government again contributed to that, as did the private sector. We had contributions from a variety of different organizations both in the media and elsewhere: pharmaceutical companies; credit unions; London Drugs; ICBC—which is the Insurance Corporation of B.C.—auto plan; CKNW, the radio station; BCTV; the Province and the Sun newspapers; and a variety of other organizations. I would guess in total it exceeded about $1 million of financial contribution and in-kind support, which is a little bit more difficult to quantify. But it was at least that.

I should also add that in jurisdictions where registries have been successful... There are a lot of registries out there around the world—none of them is quite as sophisticated, we believe, as the one in British Columbia—but a number of them are not very successful. One of the reasons ours has been as successful as it has been to this point—and we believe in the future we're going to take that much further forward; we've learned a lot in the last year—is that we followed some success factors that have been identified for registries in the U.S. One of the most successful ones in the world is in Illinois, where the government contributes in excess of $2 million a year to market, advertise, and promote organ donation. There's a strong commitment to this cause in that state.

• 1015

So if this is going to be successful, we can't do it by half measures. It has to be a total community effort with contributions from the private sector, government, and the voluntary sector, and that has really been the hallmark of the success so far in British Columbia.

Mrs. Rose-Marie Ur: What does it cost to maintain? Are there maintenance costs?

Mr. Bill Barrable: Maintenance costs would be less than $100,000 a year in terms of the technology and the staffing, but we need to do mail-outs, and printing costs and that sort of thing would be in excess of that.

Mrs. Rose-Marie Ur: And evaluation?

Mr. Bill Barrable: We were able to track whether the organ donor registry is being cleared. We've built in a program to do that. We can obviously monitor how many people have registered, and we put in some performance indicators to monitor what the consent rate is and the number of donors we have. It's a long-term proposition to get people recorded onto this. We're not anticipating that the registry is going to make a material impact on the number of donors in the first few years, but coupled with the regulations that force the identification and the notification... That will have an impact in a shorter period of time, the registry in the longer term, but together over the long term we'll see a marked improvement in organ donation in the province.

Mrs. Rose-Marie Ur: Do I have time?

The Chair: You have time for a very short question.

Mrs. Rose-Marie Ur: With your registry in B.C., can you see that being extended as the national registry since it's working so well? What prohibits that from becoming the basis for a national registry?

Ms. Penny Priddy: I'm not sure anything does prohibit that from becoming the national registry, other than the position or opinion that other provinces would have, but there's nothing from our perspective that stands in the way of that happening.

Mrs. Rose-Marie Ur: I mean, the wheel is invented; let's go.

Ms. Penny Priddy: That's why we're here.

The Chair: Mr. Martin.

Mr. Keith Martin (Esquimalt—Juan de Fuca, Ref.): Thank you all for coming in front of our committee today. I really appreciate your intervention.

I've been to London Drugs and had my driver's licence done and health card done. I've never actually had an opportunity to be an organ donor... although I am one from way back. So I'd suggest, to paraphrase you, Ms. Priddy, regarding people taking the trouble to be organ donors, let's make it no trouble at all. To have an opportunity on a repeated basis would be very helpful to increase your numbers, and perhaps getting that card in front of people's faces every year, perhaps through their tax form, would be very sensible.

The second thing is that you lose half your donors, and what we've found in statistics is that if people inform their loved ones of their decision, that number jumps to about 92%. So on your card is there a section where people can tick off the question, “Have you expressed your wishes to your loved ones?”

The Chair: I know he wants to catch his breath. Do you want to answer that?

Mr. Keith Martin: Actually, I want to introduce two quick questions.

Just yes or no, Ms. Priddy, is there an opportunity on the cards to tick off if you have told your loved ones about your decision?

Ms. Penny Priddy: No, there isn't, but the recommendation in all written literature that is available to people is that they do so.

Mr. Keith Martin: Okay. Thank you.

To bring your attention to a really critical problem occurring in our province, and indeed our country, there is a critical manpower shortage in terms of medical personnel. To deal with the kidney issue, most nephrologists are over the age of 50. The number we are training is less than half of what we are losing every year, and with the increasing demand on nephrology services, that is going to be a very serious problem in the very near future. I would submit to you that we need to invest in the manpower training not only for those people but also for the nurses and technicians who are required to give good health care in the province of B.C.

Lastly, I would draw your attention to the very critical lack of government funding for health care services in the north, in Prince George and in the surrounding areas. A crisis is taking place, as you know, and the British Columbians who live up there are suffering badly. So I just lay that at your feet.

Thank you.

Ms. Penny Priddy: At another time we could have the discussion about rural and remote health care services, but since this is about the organ donor service, I'd ask Dr. Fatin, who is a medical consultant to us, to comment on the issue you've raised about specialists.

Dr. Neil Fatin (Medical Consultant, Government of British Columbia): This issue we can take back to our graduate training program in the province and make sure they are aware of these facts, because they juggle the residency training programs each year with regard to future needs for services. So we will do that.

Mr. Keith Martin: Okay. They don't have the money, but thank you.

• 1020

I have one last point to make. Mr. Barrable, the Philadelphia experience is that they are an area where the demographics are very similar to what we have here in Canada. They've more than doubled their rate. They have a rate higher than Spain. Can you please tell us why?

Mr. Bill Barrable: I think one of the main reasons for this is that they have the support of their own government at a very high level. The former Governor of Pennsylvania, Robert Casey, was a heart and liver transplant recipient. He was a driving force in getting the legislation passed that ensured that all hospitals reported all deaths. This led to a 50% increase in the donation rate. They have provided leadership across America to other programs.

Again, the common denominator in those jurisdictions that do very well is that they have a system and an accountability framework in place to ensure that there's a high level of hospital performance in this area.

Mr. Keith Martin: Thank you.

The Chair: Mr. Barrable, what's the population per million ratio in British Columbia?

Mr. Bill Barrable: The donor rate in I think the last recorded year for the Canadian organ replacement registry was about twelve per million. So we have a long way to go to turn that around.

The Chair: But the base was obviously a lot smaller than the 180,000 that you now have in your registry.

Mr. Bill Barrable: In terms of what was on the driver's licence prior?

The Chair: Right.

Mr. Bill Barrable: Nobody really knew. We didn't have unique identifiers. We didn't know how many people had duplicate registrations, and we didn't have an accurate number. So we really don't have a comparator for that, unfortunately.

The Chair: We'd really have to wait at least a year in order to start that at a base figure to make a comparison.

Mr. Bill Barrable: I'm not fully sure I understand the question, but what I would say is that the system we moved from was not fully understood in terms of its success. We're moving to a system that we can now monitor and evaluate, and that's what we have.

The Chair: Thank you.

Madam Minna.

Ms. Maria Minna (Beaches—East York, Lib.): I have a couple of questions. I want to go back to the first one with respect to the card versus the sticker at the back of the health card, as they have in Quebec.

There are two issues there. One is that I understand you do it so that a person in fact has read it, has taken the trouble to go in, and it indicates a bit more of a proactive action.

We've had some submissions from other representatives, who have said they would recommend that the family have no say at all, that if there were a registration under the law that applies, the family does not have the right and should not be given the right to override that. Have you looked at that and decided not to, for reasons... I wonder if you would accept that kind of approach.

Ms. Penny Priddy: I'm sorry, I don't understand.

Ms. Maria Minna: If a person is registered, I presume from what you've said so far that the family does have the ability to override that registration.

Ms. Penny Priddy: They do, or at least we've had that occurrence happen, over the sticker on the driver's licence, but this particular card that people sign has been verified with our legal consultant, and it has the same legal status as an advance health directive would.

Ms. Maria Minna: Okay. If a family insists, do you have legislation that says that is not acceptable, not allowed in the hospital, that the medical professions must follow the consent, the sticker or the card rather than the family? At some point, where does it stop?

Mr. Bill Barrable: In fact, there is legislation that stipulates that the wishes of the donor are paramount. That's the Human Tissue Gift Act. The acts across the country are similar. In fact, that legislation is already in place. By custom, however, there are situations where the family is allowed to overturn the wishes of their loved one. That is something that actually the public doesn't support.

We've done a public opinion survey in B.C. that shows that 86% of British Columbians do not feel it's right for their loved ones to be able to override their wishes. So the law, the ethicists, and the public opinion are all going in the same direction: Thou shalt follow the wishes of the donor. Yet it still occurs, and I think this is an area where we need to have public debate and discussion and professional and public education.

Ms. Maria Minna: Okay. There's one other thing.

In your document presentation you talk about the organ donation organization, and there are two of them. Are the tissue and eye bank and all of that part of the organ donation? Is that all one and the same, or are they separate?

• 1025

Mr. Bill Barrable: In fact, organizationally they are separate. In terms of the registry itself, though, there is an opportunity for people to consent to tissue and eye donation, cornea donation, but organizationally in British Columbia the tissue bank and the eye bank are separate from the British Columbia Transplant Society.

Ms. Maria Minna: It that working well, or would you... Others have suggested there ought to be one organization that deals both with organ, tissue and eye, but there are specialties within this, so that it's easier to coordinate because you're dealing with one body, to put it crudely, one individual as opposed to more than one.

Mr. Bill Barrable: If I might speak to that, in jurisdictions that have high organ donation rates in the United States, typically the organ recovery for tissue, cornea and solid organ transplants—heart, lung, liver, etc.—are consolidated, they're usually done under one umbrella. So the trend is towards consolidating those services, and I believe the federal-provincial task force from 1996 recommended this as well. So we would certainly be supportive of it.

Ms. Maria Minna: So you wouldn't advise the federal government to have separate agencies; you're looking at one national coordinated agency. I presume in your own jurisdiction you're looking at the same thing?

Mr. Bill Barrable: Yes.

Ms. Maria Minna: Thank you.

The Chair: Thank you, Madam Minna.

Mr. Grewal.

Mr. Gurmant Grewal (Surrey Central, Ref.): Thank you, Mr. Chair. I join my colleagues in welcoming, thanking and congratulating all the delegates. In particular I welcome the health minister, Penny Priddy, who happens to be my MLA, and she's one of the four MLAs sharing my constituency. Welcome to Ottawa.

I have two quick questions. Number one is that B.C. Transplant Society was established in 1986, 13 years ago. Last year their operating budget was $23 million and it is fully funded by the Ministry of Health. I learned that the donor rate is 12 per million, which is not different from the rest of the country. Why so? Why there is not any increase in the number of donors?

Second, the provincial government ran out of money three weeks before the expiry of the fiscal year and the hospitals are operating with huge deficits, particularly the Surrey Memorial Hospital, where the minister and I are from. The services are prioritized there and people at the bottom of the list don't get any services in that particular hospital, and the minister knows very well that the doctors, nurses and other providers of health care services are under stress. Surrey Memorial Hospital recently had to cancel 60 emergency surgeries because of the shortage of beds. So I would like to ask the minister very quickly the question—-

The Chair: Let me interrupt a second. I've been listening because I wanted to see how this was going into organ donations and transplantation. I accept the merit in your question, but I think I'd like to stay on topic. I was waiting for the question to come on to see if it was in order. So as you ask your question, will you focus it on our topic, please?

Mr. Gurmant Grewal: That's what I was going to do, Mr. Chair. If you had heard the question probably you didn't have to ask about this one.

How does the minister or her government compromise the management of organ donation and transplantation with the offering of health care services in the emergency patients?

Ms. Penny Priddy: I actually will answer the second half of the question in a limited way, if that is all right with you, Mr. Chair, and then pass it over.

In terms of organ donor transplants, there is no indication that there are organ transplants not being done based on financial issues. Those are emergencies, like any other emergency in the province, and that health care is carried out. So we don't say to somebody, you can't have a liver transplant because your hospital's running a deficit or you don't have enough staff. That is an emergency situation and we will go ahead and perform that surgery.

Bill could take the first part of the question.

Mr. Bill Barrable: In terms of the organ donation rate, the reason that British Columbia and indeed the rest of Canada haven't had a higher organ donation rate is because we haven't had a system in place, and those are the elements that we're putting into place now. Three years ago our board was reconstituted. Prior to that there were a number of hospital staff, medical staff, representatives on the board, which made it difficult for this central body to take policy positions that were perceived to be different from the interests of the hospital institutions. That has changed, and it is one of the major reasons why the policy and the changes that have occurred in terms of systems have moved ahead in British Columbia. We expect that the situation in terms of organ donations is going to turn around as a consequence of that.

• 1030

I'd also like to mention that as a result of the organizational framework in B.C., starting in 1995 the Transplant Society began to fund in-patient transplant services. A major part of the budget you refer to is related to clinical work done by various organizations within the province. A very small proportion of our budget is for staffing for the Transplant Society, less than 20%, which is the converse of a hospital.

I'd like to mention that the BCTS pays the hospital institutions on a capitated rate. We pay the hospitals $20,000 for every kidney transplant and $100,000 for every lung transplant, so that the institution always has the resources in place to ensure that a transplant is done, that beds are available, so that the situation we saw recently, where lungs weren't used because there weren't “the resources available to do it”, doesn't happen in British Columbia. The hospital is accountable for delivering that service, and the money's there to provide it.

Mr. Gurmant Grewal: Thank you.

The Chair: Mr. Grewal, do you have some more?

Mr. Gurmant Grewal: I think that's all.

The Chair: Thank you.

Mr. Myers, we'll finish off with you.

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

I want to start by thanking the presenters. I thought what you said was very valuable and very insightful for us as a committee, and certainly your reputation has preceded you in terms of the good work you do in something that hopefully will be a model for us in a meaningful way.

To the honourable health minister, I want to go to the suggestion for us to take a look at your model for a national system, which is on page 3 of what I consider to be your report. I wanted to talk a little bit about the fact that, as you know, we have a somewhat informal national waiting list now. But you're calling for a much more solid one, a much better one, a much more indicative one in terms of what's needed across the country.

What do you see then in terms of partnership between the provincial and federal government? What do you see as the various roles? How do you see that breaking down in terms of the role of the provinces versus the role of the federal government in this new system you suggest we should have? I wondered if you could respond to that, because we're always very sensitive to the provincial jurisdiction, and—

Ms. Penny Priddy: I'm so pleased to hear that.

The Chair: Yes.

Ms. Penny Priddy: Yes. Thank you.

I think the provincial role is in many ways as we have described as a team here today, which is actually to manage this within our province, to manage it on the ground, to ensure that the resources that are available are integrated resources as we've described, because with this one everything works out of the Transplant Society, including the budget, which they then give to the hospital. So I don't see our role changing.

But I think the role of the federal government, and I would suggest in many cases it can be applied to other health issues, is a role of leadership in terms of standards, in terms of quality, in terms of some of those standards about how many transplants you have to do in order to maintain a quality control for those kinds of standards and protocols that surely would apply in any province. So the federal government isn't telling you how to run it, but it is saying there are certain standards and benchmarks you have to meet in order to have quality programs. For me, at least, as a political person, that is a mandate of the federal government that I could live quite nicely with, as well as working with the province to coordinate a federal database, because we can't do that as individual provinces. We have to have federal assistance and leadership in doing that. So I think the roles actually divide out quite nicely.

Mr. Lynn Myers: But if that's the case, why is a national waiting list as we perceive it now not working, or maybe even falling apart? Can you comment on that?

Ms. Penny Priddy: Bill can.

Mr. Bill Barrable: I think those specific questions related to that probably should best be addressed to the MORE program in Ontario and some of the other players that have traditionally operated the national waiting list. It's a priority that we should have one. Generally I don't think you'd find anyone in disagreement with that principle. I think what has prevented it from happening are some technical and other issues that are really internal to the system. In British Columbia we're very supportive of having a national waiting list, and when the various proposals came forward we offered to contribute our proportion of the cost of that program. We'd like to see it go ahead, and I would hope this committee could help to further that.

• 1035

Mr. Lynn Myers: In your opinion, then, is there a role for the federal government in that?

Mr. Bill Barrable: I think there's a leadership role. From my perspective—I'm not speaking from the provinces' perspective—the provinces' role is to manage and deliver the various systems. In this particular area I think there's a leadership role for the federal government in ensuring that somebody takes responsibility for it, but they don't necessarily have to do it themselves.

Mr. Lynn Myers: My final question is again to the health minister. You talked about the establishment of incentives to encourage each province to bring in legislation to facilitate the introduction of a system, etc. What did you have in mind when you used the word “incentive”?

Ms. Penny Priddy: Let me answer part of the question and I'll ask Bill to answer the other part.

We don't need to search the United States for our models, but because there are very successful models in Pennsylvania and Illinois—the two best-known ones—the Vice-President of the United States has actually mandated that all 50 states must have registries. So they are also looking at what they need to do to have all of their states on board.

In terms of the particular incentives, I'll ask Bill to comment.

Mr. Bill Barrable: Certainly. Since the White House mandated this, there have been some problems in implementation in some states that have not followed the implementation process of Pennsylvania. So some states have done a better job of implementing the concept.

In terms of incentives, we consulted with the folks from Pennsylvania, and they indicated one of the greatest strengths in getting buy-in was results. After they implemented the system, everyone could see very clearly how well they had done. This served as a great incentive, and any resistance that had been there before seemed to dissipate.

They had very strong support from the Hospital Association of Pennsylvania, and I should say that in terms of the regulations that are about to be passed by our government, the B.C. College of Physicians and Surgeons, the BCMA, the Registered Nurses Association and the Health Association of B.C. all support them.

Those are key elements to success. The organizations that have provided leadership in health care in that jurisdiction need to be behind the initiatives, otherwise they won't work. The concept is a great one, but if it's not accepted and those organizations have antibodies for the idea, it won't work. In terms of implementation, that is something the federal government needs to be sensitive to.

Mr. Lynn Myers: Thank you very much.

The Chair: You have about 30 seconds left in your time, Mr. Myers. I'll recognize Madam Ur.

Mrs. Rose-Marie Ur: I guess this is just a point of clarification. Madam Minister, you said each province has their own techniques. I don't quite understand that. An organ donation, whether you're in B.C. or Ontario, should be the same. How does one province differ in that attitude? I can't understand why they would think differently on an organ donation in one province compared to another. Maybe you can clarify that.

Ms. Penny Priddy: Certainly. I'm trying to be sensitive to the role of the provinces and the role of the federal government in terms of how health care is delivered. I just meant that somebody might choose to have a different kind of registration. Maybe they have a different form. Maybe they don't have everybody under one umbrella. We think ours is the best model. I just think the federal government would be unable and perhaps unwilling—I have no idea—to say you must do it exactly as British Columbia has done it, as much as we think that's fine. They may want to do their outreach or their coordination differently. Maybe they don't want the entire budget, which is, as I think the member from Surrey has said, $23 million. Maybe they want some of that. Maybe they want part of the fee, price or cost lodged with the hospital instead of the transplant society.

I only mean those kinds of differences. I can't imagine, though, that we would want to see any difference whatsoever in terms of the integration of services, the quality control, the database and so on.

The Chair: Thank you very much, Madam Priddy, Mr. Conroy, Mr. Barrable, Dr. Fatin. Thank you very much for your interventions and your responses.

I'm going to adjourn the meeting for about two minutes because we have an additional panel coming up afterwards. I know I join all of my colleagues on both sides of the table in thanking you for a most elucidating session.

• 1040

• 1048

The Chair: In our next panel we have three presenters. We have Madam Prudence Taylor, who is the project team leader from the Health Strategies Division in Alberta Health. Welcome, Madam Taylor. We have Kimberly Young, who is the transplant education coordinator, Capital Health Authority, and is with the H.O.P.E. Program, also from Alberta; and Mr. Calvin Lee, who is the chief operating officer of Gateway Information Facility for Transplant Services, but he's not from Alberta. He used to be.

I noticed you were all in the audience in the last session, so you're familiar more or less with our modus operandi, so to speak. I'll start right at the beginning and ask Ms. Taylor to make her presentation.

Ms. Prudence Taylor (Project Team Leader, Health Strategies Division, Alberta Health): Thank you, Mr. Volpe, and thank you to the committee for the invitation extended to me to come and meet with you today.

The purpose of my presentation this morning is to provide the members of the Standing Committee on Health an understanding of some of the critical elements to donation. I know these have been mentioned before, but it's my opinion critical steps have been overlooked and I'd like to suggest recommendations for the role of government to enhance the Canadian donation system.

Understanding the complexity of donation and transplantation is essential to the debate and the work of this committee. While steps in the donation process have been described that usually refer to the technical side of donation, there is another side that is poorly understood and articulated. This concerns the sociological phenomenon around donation and transplantation in our society.

Unlike other medical interventions, transplantation requires the full cooperation of society if the benefits are to be realized. Therefore an understanding of the complex set of beliefs, behaviours, interactions and relationships that come into being throughout the donation process is critical to the establishment of clinical standards and the development of public policy and legislation.

• 1050

To start with the technical side, there are many steps, each involving distinct tasks, that require the participation of a number of individuals, none of whom is responsible for this process from beginning to end. A single case can involve the participation of several hospitals within a province, emergency or ambulance services and, as a consequence of organ allocation, the participation of many hospitals across Canada.

[Editor's Note: Inaudible]

...tissue is also a consideration, which it generally is. This may involve regional and international tissue centres.

The clinical pathway to donation—and I'll just take you quickly through this—starts with the resuscitation of the individual who is suffering a cerebral insult in the field, in the emergency room, and then later in the intensive care unit—following through the organ donor route, however, tissue is more varied—the identification of an individual as a potential donor; consultation with an organ procurement organization; and the declaration of brain death.

The areas I'm taking you through are those that have been missed by other presentations, in my view.

The discussion with family regarding the events leading to the diagnosis of death is a distinct step. We have the family needs assessment; the offer to family members of the opportunity to consider donation, and the provision of support and comfort; and consent of both the family and the medical examiner and coroner, which is required by the provinces in many jurisdictions if the death falls under the fatalities act.

The risk assessment interview with the family is often overlooked. Having a consent process that avoids discussion with the family doesn't impact on the fact that the family has to go through an interview to determine the medical-social risks. These are very detailed personal questions about sexual preferences and behaviours. Others follow through the clinical assessment investigation and consultative process to determine organ suitability, allocation, and tissue recovery follow-up with the family in risk assessment.

The literature clearly describes the requirements of these steps, each critical to the pathway leading to donation and transplantation. The clinical settings and environments where this occurs include emergency rooms, intensive care units, operating rooms, hospital quiet rooms, chapels, laboratories, mortuaries and offices. These areas are often congested and lack privacy.

Donation needs to be recognized as a critical health care service requiring a comprehensive coordinated approach. The literature in this area demonstrates that attention to one step in the process will not solve the problems we are facing in Canada. Because many different individuals are involved in the donation process, specific responsibilities need to be defined to achieve a level of accountability and coordination. A total quality improvement approach is an important consideration to reduce the risks associated with donation and improve and sustain the efficiency and effectiveness of the donation process.

These concepts have been described by Spain, which has a comprehensive coordinated model that has led to sustained excellence in donation outcomes. The public view of donation has often been tied to the altruistic voluntary giving of the gifts of life, reference to which is seen in letters that flow between the families of donors and recipients, organized religion, and in legislation such as the Human Tissue Gift Act.

Attitude and behavioural models demonstrate that willingness to donate is indirectly influenced by a complex set of beliefs about donation. These beliefs are founded in knowledge, societal customs, religious views and personal experience. The lack of accumulated knowledge and support for a common theoretical donation structure have resulted in a diversity of opinions about what this is about and how it should occur.

Confusion around the theoretical base for donation in a cross-cultural society has led to different approaches to public policy, such as policy developed around the notion of taking versus giving. To be effective, public awareness and policy development need to be coordinated from a common foundation, and programs need to be developed to empower minority communities to become involved and participate.

Social marketing is another public health program that is an important part of a donation service. Donors vary from newborn babies to those in advanced years dying from a multitude of causes, from birth injury, accidental drowning, spontaneous brain hemorrhages, brain tumours, accidents, gunshot wounds, child abuse, suicide, and homicide. The families of the donors come with diverse needs and grief reactions. Individuals interacting with these families need skills in understanding grief reactions, the needs of families in crisis, and the ways to comfort and support. They must be comfortable in discussing organ and tissue donation and obtaining personal and private information about sexual behaviours and drug use. Research demonstrates that those skills, through special training, can be effective in creating an environment conducive to meeting the needs of potential donor families and, in doing so, enhance the likelihood of consent. Bereavement support is a critical aspect of donation practice.

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In summary, the approach to resolving the organ donation crisis in Canada should be coordinated, comprehensive, accountable and sustainable. In doing so, I recommend that the government of Canada cooperate to recognize donation as a unique public health service and to develop a comprehensive model for donation that is coordinated, accountable and transparent, based on a common sociological framework. Such a model will have a donation code of ethics to guide decision-making and legislation to find the scope of practice.

Under this, I come with a lobby to consider the cross-cultural issues in donation and the humanity side of working with families throughout this. I've heard comments that indicate that this is very difficult and it adds burden. As someone who has been involved with talking to families, supporting families, this is one of the most rewarding things I've ever done in my clinical health care practice. It is not burdensome; it's a privilege. But it needs to be done in a way that meets the needs of family.

I would like to give you a little example, if I may, of what a different cross-cultural approach may be.

I'm originally from New Zealand, and I worked with a very cross-cultural population there. I've been very sensitive to cultural beliefs and the way cultures bring understanding into decision-making.

I was involved in approaching an Inuit family one day. The concern was that this family would not understand donation, and how could they make an informed consent? I met with this family and explained what donation was about and explained very clearly that their son would be returned to them without his organs in his body, if this is what they chose to do, very aware that some of these things are important to cross-cultural groups.

When approaching the family—and I want to say I offer families the opportunity to donate; I do not ask or request taking from them—I asked them what their people, meaning the Inuit people, would think of donation. They actually retreated into a conversation amongst themselves for a considerable length of time. They put it into the context of what their people think of dying and death and helping others. I learned a lot about the Inuit people and how they consider and respect the living, and how they believe in the spirits and gods of nature helping them as they leave their loved ones to die. With that, they explained to me in very strong terms how this was something they felt their people would support, and given that, it was very important for their son to be a donor.

I think this cross-cultural knowledge of approaching families and giving families the opportunity is a very important foundation to what we're talking about here.

The Chair: Thank you, Madam Taylor.

I'm going to go to Kimberly Young, who's here wearing two hats today, so she's essentially going to give us two different presentations. She's sensitive to our need for respecting time, so I'm going to ask her to give one presentation now, then I'm going to go to Calvin Lee, and then I'm going to come back to her. Is that fair enough?

Ms. Kimberly Young (Transplant Education Coordinator, HOPE Program, Capital Health Authority; Representative, Canadian Association of Transplantation): That's fine. Have you any preference as to which is first?

The Chair: It's up to you.

Ms. Kimberly Young: Okay.

The Chair: Are you going to do this as a Capital Health Authority representative or...

Ms. Kimberly Young: Yes, I'll talk as the transplant education coordinator with the Capital Health Authority first.

The Chair: Okay.

Ms. Kimberly Young: As some background on my position, I have worked with the transplant program front lines for almost seven years, so I am an organ donor coordinator by role.

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The purpose of this brief is to provide the members of the Standing Committee on Health an understanding of the new initiatives undertaken by a health region in Alberta to design and implement a best-practice-based process for organ and tissue donation.

In the way of background, historically and presently donation is based on goodwill, with no standards of practice. This has contributed to fluctuations in donor performance from year to year. Because of lack of consistency, some donor families who have been approached for organ or tissue donation have reported dissatisfaction with the way this issue was handled during the hospitalization of their family member. Concerns included lack of information, information that wasn't correct about the process, and confusing information about brain death.

In a health system that is committed to transplantation of both organs and tissues, and to compassionate care for all families facing death of a relative, Capital Health believed more explicit guidelines were really needed then to ensure that eligible families were offered the option to donate, and that the communication was handled in a sensitive and consistent manner. The Capital Health region decided to systemize care that families were receiving in the emergency departments and the intensive care units, specifically for the donor situation. The goal of the project is to identify 100% of eligible potential donors and to provide the optimal care to families before and after the discussion on donation.

The project has four elements: a communication guideline for families of potential organ and tissue donors, a designated family support coordinator to facilitate the care team in observing the guideline, an in-depth education for hospital staff, and a quality assurance system.

A focused initiative was undertaken by the region, utilizing an external agency. The Partnership for Organ Donation, POD, from Boston, Massachusetts, in the United States, whom I believe you'll be hearing from next week, was the group we consulted.

To determine the potential donor pool, a diagnostic process using a medical record audit tool was developed by the Partnership for Organ Donation and was utilized. The attitudes and beliefs of staff were also utilized in a blind survey. With this baseline data, we could then move forward and take this area-specific information and highlight areas for potential improvement. The Partnership for Organ Donation provided facilitation, support, and technical assistance to what we created, the Capital Health Donation Committee, and they determined a project plan.

The program utilized a model similar to the one described by Spain and some successful American programs. The key to effecting change was thought to be through a holistic coordinated approach by health professionals responsible for donor identification and family intervention, introduced by those areas delivering front-line care. This is a different approach. We're talking about the people who are on the front lines versus the transplant and donor program.

I will now provide you with a project overview, including the structure of the donation committee, the development of guidelines, determination of roles and those important responsibilities tied to the roles, implementation of professional education, and performance monitoring systems.

The donation committee was paramount to the success of the project. There was commitment from the chief operating officer for the University of Alberta Hospital, the medical chief of neurosciences, and the hospital executive committee. The membership for the committee was multi-disciplinary and was derived from the areas in the region where, as I said earlier, the front-line care would happen. This included representatives from adult, pediatric, neuroscience units, and emergency. The transplant and donor programs were represented on the committee, but they had no leadership role.

So we established the committee, and the first order was to develop a guideline for communicating with those families. The focus of this initiative was on donor identification and communication.

To design and initiate an improved system for donation, a guideline was developed incorporating principles of best practice. We looked at the literature. We looked at other groups' experiences. We sought participation from the critical care professionals to identify and adopt optimal and orderly practices for this process, what would work in their area.

Consensus for practice was critical to the success of this initiative, including the timing of intervention by the organ procurement program. There was a real concern as to when we should bring in the organ donor program. We didn't want to provide confusion to families, by bringing an organ donor family in too early, that this was something we had given up on. That was a serious concern for these people on the front lines.

Also, a clinical trigger was identified to ensure referral to the family support program was consistent. A clinical diagnosis triggered the intervention, including the family support role, which I'll go on to describe now under roles and responsibilities.

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Donor families have diverse needs and unique grief reactions. Therefore, a family needs assessment must be done immediately to determine the best options for providing information, comfort, and ongoing support. Early in the project it became evident that the dedicated role for a professional to provide family support was absolutely required. The role was to be distinct from the donor program. The desire, as I said earlier, to separate family support and intervention from the organ procurement program was seen as essential. With early intervention involving the donor coordinator, the family could have misinterpreted the diagnosis.

The skills required for this role were consistent with those found in the disciplines of nursing, pastoral care, and social work. It was recognized that this should be a new position, not an added responsibility to an existing position, and it should report to the critical care or neurosciences area, and not transplantation. This was a critical step toward professionalization of donation as a unique area of health, and not a part of transplantation.

The next step was to develop an education plan. Studies undertaken in several Canadian hospitals on staff knowledge and attitude toward organ and tissue donation showed there was poor knowledge of best practices surrounding the donation process. That was done in that early diagnosis phase. We knew what staff understood. This could be attributed to the absence of professional education programs in this area and undefined roles and responsibilities for those people interacting with families. Therefore, it was essential to define these functions within the education program. Special training sessions are now being planned for those who have a role anywhere in this process.

Finally, regarding performance monitoring, the donor identification tracking tool, the medical record review, and family needs assessment tool will all be used to collect data and assist with identification of areas that require further development. The family support coordinator will also be responsible for monitoring regional outcomes and ongoing program evaluation. This will allow us to identify problem areas and assist in comparison of our performance against other regions or programs.

In conclusion, all families would benefit from a coordinated and supportive approach to donation during this time of personal crisis. Hospitals will benefit, there will no longer be role confusion, and data will determine performance, including the areas requiring further development. Adherence to the guideline will ensure all potential donors are identified and referred to the family support coordinator.

A system created by health professionals interacting with donor families in the critical care areas and emergency departments is desirable and sustainable, as these groups have designed guidelines that outline a standard for practice that they have determined and are then accountable for.

Some closing recommendations: The Capital Health region recommends the Standing Committee on Health further explore the opportunities identified by this initiative to promote a comprehensive holistic approach to foster behavioural change in the practice of identifying donors and in then caring for families.

The Chair: Thank you, Ms. Young.

Mr. Lee.

Mr. Calvin Lee (Chief Operating Officer, Gateway Information Facility for Transplant Services): Thank you for the opportunity to participate today in this important public examination.

In my comments I want to elaborate on just a couple of issues I've raised in my written submission, which I've titled “Potential Impact of Electronic Donor Registration on Organ and Tissue Donation”, and in doing so, probably to complement some of the remarks you heard earlier on with the first panel of people from B.C.

First a word about the context of my remarks. I'm with Gateway File Systems, and we're the Victoria-based company that developed, implemented, and supports B.C.'s organ donor registry. We're also collaborating with other organ procurement organizations and hospitals in the United States in implementing this same type of approach in California and Washington, D.C. In fact, hearing some of the questions, it is interesting to compare very similar kinds of issues they face down there.

One of our partners in Washington, D.C.—one of the non-profit organizations, the National Minority Organ/Tissue Transplant Education Program—really has exposed us to many of the cultural questions that Prudence just related.

In the California situation they're recognizing that in fact organ donation really is very much like an advance directive. It's one of a number of end-of-life decisions that people take. There's a linkage down there, especially from the hospitals, in terms of using the advance directive along with the organ donation form as a way of seeking consent in a wider way. It's not the core of the whole program, but it's one of the things they are going to try with one of the hospital maintenance organizations, and we in fact at this point are administering the advance directives registry for one of the hospital groups in Victoria.

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As has been previously raised with the committee, donor identification is a critical factor in proceeding from declaration of brain death to discussions with next of kin concerning the potential donation of organs and tissues. In this donor identification, three elements and their administration are of relevance: first, the original decision to donate; second, recording and registering or storing that decision; and third, recovering and applying the consent some time later at the time of death. I can elaborate later if you wish, but at this point suffice it to say that I know of no program, other than that in B.C., that deals with these three elements in any kind of integrated or even coordinated way.

Of particular concern, and discussed earlier on, are systems that use donor cards or key-entered data as the basis of their registration. Of course the difficulty with this is that they fail to bring the right information at the right time to the right place. It's a difficulty that is faced in a number of registry programs.

The donor identification approach adopted in B.C. is, to our knowledge, the first of its kind in the world. It applies technology in three areas, and you saw that on the screen to some extent. First of all, it scans this particular card as a registration form into what you might call a database. It indexes it using in fact, in B.C.'s case, the health care number. Secondly, it stores it. It's electronically stored on a server, which, because this is an image, takes up quite a bit of storage space. Thirdly, it is network-transmitted either over the Internet, telephone, or through a dedicated network such as HealthNet/B.C.

So here's how the technology actually works in B.C. The donor decision cards you were shown before, along with the organ donor information, are distributed through a number of means. As mentioned, they continue to use motor vehicle branches, continue to use health care, drug stores, and so on. These cards record the donor's decisions—and I underline the word “decisions”, because it does involve a check-off of a number of issues.

In California they're going to expand this. They deliberately want to have a section in there whereby the decision-maker is encouraged not only to sign the form but to add comments in their own handwriting, therefore underlining even more that it is an informed decision to consent. So these cards record the decisions, as you'll note if you have picked them up. The signed cards are then mailed, as shown, to the B.C. Transplant Society.

Once they're imaged into the system, the original consent form is now in electronic form. It's in electronic form that can be accessed by transplant officials in a number of ways. In British Columbia, the method used at this point is by interactive voice response—pick up the phone and simply get the information—you get a fax back, as was shown. But also available, and to be in use in B.C. and other places, is the ability to access this over the Internet or over a network. In that case it comes up on the browser screen, and simply using the print command, one gets the hard copy of this original signed consent.

Then of course this hard copy of the original signed consent form can be shared with the next of kin. The resultant donation decision becomes a validation of the original decision rather than a replacement of the deceased's original consent form.

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Now previous committee witnesses have stressed that for any program of organ donation to succeed, it must consider the support, initiative, and actions of those involved directly in the actual decision at the point of death. In her remarks, Kim has underlined the importance of that front-line focus. Of course this includes the next of kin, hospital intensive care professionals, and those who will approach the next of kin for permission to proceed with organ donation and recovery. For these individuals, the B.C. approach has a significant impact, as I've indicated in my written submission.

First of all, at the time they are approached, donors can be assured, almost like an advance directive, that their informed decision to donate will be both registered immediately in its entirety and applied definitively at the time of their death. Secondly, organ donation and procurement organizations, in their public education activities and promotions, can highlight an explicit process for fulfilling the donor's wishes. Third, hospital-based officials, like transplant coordinators and medical and hospital staff, will have a signed hard-copy image of the donor's original signed consent for a decisive introduction of the transplantation discussion, including an identification of the deceased as a donor for the next of kin.

In closing, I want to stress that we don't view organ donor registration as a program in itself. As Bill Barrable said, it will not succeed without significant public education and promotion, probably on ongoing attention to this. But this ability to capture and complement those kinds of things can have a dynamic effect. So the organ donor registry is only one tool in fostering organ donation. It's designed to meld with and enhance rather than replace other key strategies and programs.

Thank you again for the opportunity to be with you today. I would welcome your questions concerning donor registration and our case study experience, in both Canada and the States, with the implementation of this unique solution. I'd like, if you wish, to share information and our recommendations on legislative policy and other approaches we have encountered in our travels.

The Chair: Thank you very much.

Now, Kimberly Young, I'm going to ask you to be really brief on this one—really, really brief. Okay, you're done.

Ms. Kimberly Young: I want your ribbon back.

I'll start, then, and I'll read as rapidly as I can. But I did want to expand this somewhat not only to introduce a public awareness initiative but to talk about education in general.

As a representative for the Canadian Association of Transplantation this time, I'd like to look at that very important piece. So the purpose of this brief is to provide the members of the Standing Committee on Health an understanding of the need for public and professional awareness and knowledge regarding organ and tissue donations and transplantation, and to recommend an appropriate role for government to enhance the Canadian donation system through public and professional education initiatives.

So in the way of background, the disparity between the number of organs and tissues available and the needs of patients...

The Chair: I've been doing a lot of that, so I'm a bad guy. Even though I asked you to be brief, you went into fifth gear. You're now into Formula One. I'm speaking for our translators.

Ms. Kimberly Young: I'll slow down. Now you've got me going.

The Chair: So you've got to slow down.

Ms. Kimberly Young: Right, we'll kick back. All right, where was I, then?

The disparity between the number of organs and tissues available and the needs of patients requiring organ and tissue donation continues to grow. While this debate has evolved many solutions to the organ donor crisis, we recommend a comprehensive holistic approach to both public and professional education. We believe by increasing public and professional awareness there will be a corresponding increase in donor referrals and, ultimately, organ recovery and transplantations.

The Canadian Association of Transplantation has appeared before this group before. They are an association of health care professionals committed to enhancing and facilitating the transplant process. One of its main purposes is to educate health professionals and the lay public about organ and tissue donations.

I'll discuss public awareness first, and then professional education.

To be effective, public awareness needs to be coordinated from a common platform and programs must be developed to enable Canadians to participate. Public opinion polls suggest that up to 90% of Canadians support organ and tissue donations. This support may be demonstrated in hospitals when families facing tragedy actually introduce the option of donation themselves. When this occurs, the hospital system must be prepared to ensure the opportunity is not missed.

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Transplantation relies on societal acceptance. Therefore government needs to support a coordinated approach to public education as a critical component of the donation process. Education programs should consider cross-cultural knowledge, just as Prudence has identified, and the beliefs that lead to positive understanding of the donation process. Teaching materials should be designed to meet family's needs in a culturally sensitive manner. The utilization of spiritual and community leaders to promote acceptance and tolerance is effective in assisting the public to understand the value of this act of humanity.

Now I'll talk a little about the national organ and tissue donor awareness campaigns our group has committed to. CAT has sponsored several national awareness initiatives utilizing brochures, posters and flyers. A contest to establish a national theme with a common message was also promoted, leading to the slogan, “Lives are in your hands. Please consider organ and tissue donation”.

CAT then sought advice from the various media experts regarding our public awareness messages. The group unanimously suggested we adopt a single theme and use it for a number of years to sustain recognition and to heighten the impact. As ribbon wearing was gaining popularity for specific causes and the American donor programs were supporting a campaign for green ribbons, the Canadian Association of Transplantation chose to pilot the green ribbon program in one Canadian city. As a result of that pilot's success, the project went national in 1998.

So the green ribbon campaign was designed as a comprehensive awareness project to initiate visible support for organ and tissue donation. The key objective was to create a broadly recognized symbol of support, which would increase discussions surrounding the donation process. Ultimately these discussions can enhance donations opportunities.

Many programs and not-for-profit organizations use ribbons as a strategy to signify support and increase public awareness of campaigns. You can think of pink for breast cancer, red for AIDS awareness. For years, Americans have been wearing the green ribbons, demonstrating their commitment to donations. Now Canadians can participate in delivering this message. Green was chosen as it symbolizes life, and ribbon-wearing has become a cultural norm for identifying support for causes.

The colour or image of a ribbon cannot be copyright protected, thus fears of others utilizing a similar colour had been an initial issue. Recognizing that no single group can own a colour allows people to wear the ribbon with pride for our cause. Certainly other groups may choose green as well, and that's okay.

At the very least, the ribbon is meant to provoke curiosity and elicit discussion as to what it means. Green lapel pins, ribbons and posters were circulated throughout Canada last year in April for Organ and Tissue Donor Awareness Week. That campaign was such a success that this year our monetary commitment was doubled to provide the nation with a large increase in the products being distributed.

I'll now talk briefly about public education. In several Canadian hospitals, studies were undertaken to determine staff knowledge and attitudes. The result of these studies suggested poor knowledge, as I discussed earlier, regarding the practices surrounding the donation process itself, and this can be attributed to the absence of professional education programs in this area. Roles and responsibilities for hospitals and organ procurement organizations really do require clarification for accountability and comparison. Both hospitals and organ procurement organizations would benefit from national guidelines to ensure potential donors are identified and families are offered the opportunity to consider donation, utilizing communication techniques such as decoupling.

Limited knowledge about optimal practices may be attributed to the different levels of training in various donation-related activities. The Canadian Association of Transplantation produced a practice guideline, which could provide the foundation for the initiation of a practice model. To date, adoption of the guideline has been limited. Furthermore, few organ procurement organizations have standardized training programs. Programs have been established, but formal accreditation has not yet been sought. So a total quality improvement model must be adopted to ensure a comprehensive and coordinated approach to the donation process by all health professionals delivering care in the critical care setting.

In conclusion, the Spanish system is distinguished by a central coordinating body with sufficient authority and resources to bring a consistent set of practice and performance expectations to the country. Recognizing that the individual transplant programs across Canada cannot regulate practices in other programs or in hospitals, and that organs and tissues are shared nationally, clearly the need for national standards on education and practice exist.

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While the Canadian Association of Transplantation identified a need for and produced practice guidelines, without the authority to influence practice, utilization of any standard method for delivering care has been minimal. A coordinated Canadian model with public and professional education components must be created to improve and sustain the donation process similar to that reported by Spain.

Finally, in the way of recommendations, the Canadian Association of Transplantation recommends that federal and provincial governments recognize social marketing as an accepted role for government that is essential in order that the education needs of Canadians regarding organ and tissue donation and transplantation are addressed. Both the public and health professionals must be targeted to attain comprehensive understanding. Public awareness campaigns that gain the broad recognition necessary must be initiated and sustained over time; they must foster behavioural change and must be evaluated. Lastly, the donation process must be professionalized by establishing a national curriculum to ensure a consistent level of practice among health professionals involved in the donor practice.

Thank you.

The Chair: Thank you.

We've only just met, but I have this sense that you could be a permanent member of this committee. You ignore my suggestions just like everybody else does.

Some hon. members: Oh, oh!

The Chair: Mr. Vellacott.

Mr. Maurice Vellacott (Wanuskewin, Ref.): I'm going to ask my Alberta guest first of all, and I have a question later for Mr. Lee also.

In the letter where the Minister of Health for Alberta regrets that he cannot be here, he says:

I recognize the complexity of the donation process and would support a co-ordinated effort between the provinces and the Federal Government to raise the level of donation rates in Canada. I look forward to reading your final report and working with the Federal Government on this issue.

The British Columbia Transplant Society—and I saw you here earlier so I know you were listening in on that and might have seen their briefs as well—made one suggestion, and it's in respect to the incentives and also the universal referral in training and those kind of things and talking about linking it to the agreement on social union and/or transfer payments from the federal government. And they append the copy of the draft regulations for B.C.

I realize you don't speak on behalf of the minister and are not in a position to do that, but what would be your hunch in terms of the Alberta experience? How would they feel about that being linked directly into the social union and/or transfer payments? I know the history of Alberta and of some of the difficulties they've had where it's appearing that the federal government is intruding or moving too directly into that area. Do you have any hunches on this, the B.C. suggestion of linking it to social union and/or transfer payments?

Ms. Prudence Taylor: At the moment Alberta is looking at an initiative. That's a government initiative in Alberta. And the focus of this initiative is to create donation as a unique health care service and not to link it to something that it is not.

What's happened is that donations started as goodwill. It was linked to transplantation. The focus on this project is to link it as a health care service, and in doing so I wish to bring to this committee's attention that Alberta brought this nationally in the first place.

In 1995, the Minister of Health brought this to the Federal/Provincial/Territorial Advisory Committee on Health Services. Recognizing that Alberta had then fallen from one of the highest donation provinces in Canadian standards to one of the lowest during their restructuring, and realizing that the donor pool in Canada was a national one and this was a health issue, the minister brought to the committee the recommendation that we approach this globally as a health issue. Because organs and recipients move across provinces, it is a matter of the logistics of coordinating that.

I think there is support in understanding that there are mechanisms in place within the health systems in the provinces and that the feds... The provinces are accountable and there's a mechanism, as has been demonstrated in Spain, whereby this accountability can remain in the provinces and even within the regions in the province. But there needs to perhaps be a national coordinating body to develop standards.

Mr. Maurice Vellacott: I notice that's the wording here and I see a cooperative spirit, at least in some of the wording. So maybe just as an Albertan, period, that's why I was asking the question in terms of the linkage.

Kimberly, do you have a response on that?

Ms. Kimberly Young: I think Prudence answered it.

Mr. Maurice Vellacott: In terms of linking it directly to transfer payments, how do you think that would go over in Alberta? Speaking as an Albertan who knows the climate of things there, what do you think?

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Ms. Kimberly Young: I can't comment on that. I'm not certain about it.

Mr. Maurice Vellacott: I want to ask Mr. Lee a question. I read with interest and found this a fairly decently put-together brochure that you have in terms of “Give Life”. I noticed it mentions at the end and after the fact, if you will: “ORGAN donation, it's a FAMILY AFFAIR. Once you've made the decision to become an organ donor, you need to share your wishes with your family.” And it goes on, mentioning the fact of loss when family members don't know the wish of their loved one. I think that's been uniform testimony throughout here.

I am just wondering about your response to this as a suggestion. If that were maybe put more at the very outset, at the very beginning—I know what it goes down like in my marriage, and this isn't just theoretical. When I say to my wife, “I've made this decision, and now I just want to kind of inform you or let you know about it”, it kind of goes south from there, if you will.

In terms of the sequence of things—and I don't believe we're individuals or islands unto ourselves—would there be any merit or validity to placing that earlier in the sequence or maybe at the very beginning? Then you're not going to have any problems later with this whole loss that sometimes occurs because of family not being fully or more linked into the process.

Mr. Calvin Lee: I agree with you wholeheartedly. The form you see before you is one that was developed by the B.C. Transplant Society itself, and I think they would probably concede that if they were redoing the form there'd be certain changes.

I guess I can somewhat repeat what I said before. It has come to mind that really this kind of a decision is an informed decision. Although in the past many of us might have checked this off and it almost seemed like a “Why not?” kind of decision, it really is an informed decision, especially at the point of death, when medical personnel are involved and are looking for direction.

Then an indication that there has been discussion with next of kin highlighted on a form like this can really have an effect, as it does with advance directives. The advance directives form we're starting to develop in California really makes the organ donation part of discussion. Of course, those of you who may been involved with advance directives also note that there are powers of attorney and so on that in fact solidify that kind of discussion in some advance directives. So yes, I think it's critical to do that.

Mr. Maurice Vellacott: My suggestion would be, maybe even on that question—and I heard there was maybe openness to that, and it doesn't put people in an awkward position at the end—to ask if they have talked to their loved ones, talked to next of kin or whatever, right on the form itself. Then they know what they're dealing with at that point.

Mr. Calvin Lee: I think that would be important.

[Translation]

The Chairman: Ms. Picard.

Ms. Pauline Picard: No, thank you.

The Chairman: Thank you. I will now give the floor to Ms. Ur.

[English]

Mrs. Rose-Marie Ur: Ms. Taylor, you spoke briefly as to your approach with the Inuit family in addressing organ procurement, and I see in your file that you were a donor procurement coordinator. I haven't been at all meetings, but I don't think we've ever had a coordinator such as you here. Could you explain to us how you approach a family, the method you use? I only have five minutes to ask the question, so I'll be simple and maybe you can use the rest of the time. How would you approach me in a situation like that? I think it would be helpful for us to hear that.

Ms. Prudence Taylor: All right, I'll take you just quickly through a process.

Someone would introduce me to you from the primary care team, and if possible, someone from that primary care team would be in the room with me, preferably the nurse who is looking after your family member or the physician who is there. Then we would go through this transition, and basically I would ask the family what they understand of the events that happened that morning to ensure they understood brain death. Then I would get a sense of where the family are at from some dialogue: Is there anyone you need to call? What religious or meaningful cultural things might you want to be thinking of in the next little while? So I'm providing a supportive environment for that family.

Then I say to them, “Do you understand what comes next in the sequence?” There's often the role of the medical examiner's office, thinking of funerals, phoning people, and we get that together.

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When I get a feeling that the family has been able to make some decisions and been able think beyond the death as it is, I offer them the opportunity... There's one line I use: “Our hospital offers all families the opportunity to consider donation. This is something I would like to talk to you about at this time.” I've never had a family that was aggrieved or disgusted or angry at this being brought up in that fashion.

Mrs. Rose-Marie Ur: Have you ever been turned down?

Ms. Prudence Taylor: Once in the years that I was doing that, a family was in disagreement. One of the issues at that time was the HIV in blood, and the siblings of the family had some information that the parents did not have that they shared with me at a later time. That was the only case on which I was ever turned down.

Mrs. Rose-Marie Ur: I have another question. I was a nurse in my previous life. I don't think the age factor, donor versus recipient, has ever been mentioned here. What age grouping is there? Let's say for a child of six, or an older person verses a younger recipient, how far-reaching is the range in age of donor that you could use? Do you have any statistics on that?

Ms. Prudence Taylor: I don't have those statistics in front of me, but we could forward them to the committee.

A newborn baby can be a donor. In Canada, I think the oldest donor has been in their eighties—it was a liver donor.

I think what we're seeing now is more the biological condition versus the age of a person, how well they've been. A lot of us, as we're moving on now, are very healthy, so we'll contribute to a large donor pool.

With recipients again from newborn babies, there used to an upper age limit as programs were developing, but now I think it's looking on whether this transplant is going to benefit this individual in lifelong quality of life?

Mrs. Rose-Marie Ur: What if the child, the donor, was two years old?

Ms. Prudence Taylor: Oh, you're looking at the matches.

Mrs. Rose-Marie Ur: Say the child who was dying was two years old. How old would a recipient be before that wouldn't be a matter of the condition of that recipient rather than the age of the donor organ? Do you understand? Say someone wanted the heart of that two-year-old. Could a ten-year-old get that heart? That's what I'm saying.

Ms. Prudence Taylor: With some organs there needs to be a match, not just the biological match of what we call antigens but a size match and a blood match. The heart of a two-year-old needs to be into someone of about the same body size, because that heart isn't used to pumping into a larger person. It could be into a slightly smaller person as well, but not too small, otherwise it wouldn't be able to fit in the cavity of that smaller person.

Size match is very critical. Within about 10% is often used, but as we get into adult years there's a little bit more accommodation.

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

The Chair: Madam Caplan.

Ms. Elinor Caplan: Thank you very much. This has been very helpful for the committee.

I want to ask you to focus on the federal role. As I do that in my question, my understanding of the different terms is that federal is the federal government. National, in my view, is a partnership between the federal, provincial and territorial governments, where there's an agreement to proceed in a certain way, whether it's establishing a national body... and usually in that kind of a model there are costs shared between the different governments, and they send representation to set standards.

We've heard requests for a national body as opposed to a federal body. I wonder if you want to help us define what you believe the federal role might be within that national agency that has been recommended, and the role of the federal government in seeing that from coast to coast to coast we have the kind of participation and accountability and the development of standards, and so forth. What do you see as the federal government's role in helping to achieve that?

Ms. Prudence Taylor: Because donation and transplantation is not just a provincial matter, because organs fly across the nation, I think it's a national issue.

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Coming to your question on what I believe is federal, obviously the federal and provincial ministries need to discuss this. But perhaps I'll talk about some models to be considered.

One of them would be that this national committee could look at the status of this as a nation as the quality assurance committee council, which would therefore report to the Minister of Health, who can link up with the provincial ministries on looking at hot spots or issues in the donation process. This committee could be the committee for the public to access regarding national issues or not being set aside perhaps in their own province with issues related to donational transplantation. There could be a committee that looks at what important consensus documents are required across Canada.

So there are some things that it may be. It may be the committee to say what provincial legislation needs to be in place to provide support. Those are the types of functions I see for that committee. I see that committee perhaps as being an advisory committee to Canadians, and one option would be through the federal Minister of Health.

Ms. Elinor Caplan: What about the national waiting list and the national donor list?

Ms. Prudence Taylor: The national waiting list has a recipient candidate list. Currently the transplant community is looking at sharing arrangements across Canada to see how we share organs. Some of it is within provinces, but if a province doesn't have a match for that organ, basically, how should that organ be shared? That is an important waiting list. There are several options as to where that may be housed. The CIHI or CORR is one place that houses transplant data. Preferably, it should be central. It could be indirectly under the administration of this committee with it being contracted out to the CIHI.

With regard to donor registries, I think that's another issue. What makes donation work is not necessarily a registry. What makes donation work is the process being integrated and coordinated. The registry provides some background information, but you need to have the humanity of using that information with these families and places that's going to work.

As to whether a donor registry is required, I would say that it would be more important for Canada to know what its potential donor population is. That would come from medical record reviews and hospitals. Then look at how effective you are with the number of transplants or donors you actually actualize from that to how many organs are transplanted. Those would be the important registries I would see this national body being involved with. With the other registry, I'm not sure that would be our responsibility.

Ms. Elinor Caplan: Do you believe the national registry should make that kind of accountability information public?

The Chair: Ms. Caplan, one moment, please.

Ms. Prudence Taylor: I think we have to be transparent, and I think—

The Chair: Ms. Taylor, one moment, please.

Mr. Lee, can I have your comment before I go to the next one?

Mr. Calvin Lee: In reading the testimony from previous discussions here, I think a couple of things have been both highlighted and reinforced.

There was a reference to the Spanish model. My understanding is that it has a number of features that are important: first of all, it's a ground-up kind of focus; secondly, it recognizes that it's multi-jurisdictional, both within the provinces and the federal government, and it would seem that at this point building on—and this is where the term “social union” perhaps came in—the current focus between the ministers of health as the body to direct that, having a national committee and perhaps expanding that national committee as a focus; and then, thirdly, adding an action element to this. A number of witnesses have commented, “We're studying this and we're researching that, when are we going to act?”

I would see no real obstacle to the health ministers in fact directing some kind of a body under their auspices. That would seem to answer the question of what would be the role of the federal minister or the provincial ministers. They'd assume the roles they do, but they'd act within their natural body.

The Chair: Thank you.

Mr. Vellacott.

Mr. Maurice Vellacott: First, there's the issue of logistics, and maybe, Calvin, since you're at one end of the country, you could clarify this. Somebody asked me this the other day. In terms of getting an organ, if you had some national donor list or whatever from B.C. and let's say there was a heart to get out to P.E.I. or Newfoundland, from a practical or logistical point of view, what happens? This organ goes on ice right away or is preserved or whatever, and then it goes by air ambulance? How do they do that? Is it practicable, or are we looking mostly within the same tertiary care unit or hospital where the recipient receives that organ?

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Mr. Calvin Lee: First of all, I don't have a disciplinary knowledge of that, other than to underline once again the coordination between the hospitals. Obviously there are two types of hospitals. We're talking about the hospital where the death occurred, which probably is not a transplant hospital, and the transplant hospital, and then of course linking that to potential recipients. How that is done, I'm not entirely sure. I know Prudence and Kim—

Mr. Maurice Vellacott: Maybe one of our other guests has a response. I'm just curious about the logistics of getting it from one end of the country to the other or the distances that are feasible.

Ms. Prudence Taylor: Currently, if there's what we call a high status in the country, there is some voluntary sharing. It is not compulsory. It's voluntary at this stage. These are people in critical care units who are requiring transplants, and usually death is imminent without their having a transplant. Without that high-level status, the organs are first offered in the province. If the province cannot use them and those organs have no recipients, they may be offered in the region—and western Canada looks within itself—or they would go to a national list, if there were one in place, to look at who's the highest person on that list.

If they accept the organ—and some people may not for various reasons, but let's say they did accept it—there's an exchange of clinical information during that process, and then the private air ambulances fly the organs, such as livers, hearts and lungs, across the country. In Alberta often we were using Canadian Airlines and Air Canada, which were able to transport livers. However, with airline schedules changing, it has gone back in many cases to using air ambulances.

Mr. Maurice Vellacott: Is distance an issue, then?

Ms. Prudence Taylor: Distance is an issue for many organs, especially hearts and lungs. Livers are less impacted by distance. But it's also the time from when the organ was recovered to getting it to the recipient centre. If the recipient died before the organ got there, the organ may then need to be routed somewhere else. So the real crux is what we call the ischemic time, the time the blood supply from the donor is finished to the time the blood supply from the recipient has started again.

Mr. Maurice Vellacott: So once that organ is on ice or preserved, if you will, there's not an indefinite amount of time. Time limits are in place.

Ms. Prudence Taylor: That's correct.

The Chair: Ms. Minna.

Ms. Maria Minna: I have two questions. One is for Mr. Lee.

The card that is used in British Columbia is obviously signed by the donor, and it mentions that they should discuss it with their loved ones. Would it make a difference at the time of the hospital period or death if, when people sign, they were asked but were not obliged to have a loved one co-sign? This would not be to verify but to simply say, I understand that's his or her wish, nothing more. It would reinforce that they have in fact discussed it with a loved one, whether it's a spouse, a brother, a mother, or what have you.

To Ms. Taylor, you have obviously done a great deal of work with families, and you talk with them. We've been hearing different points of view. Some people say that even if there is a signature and a request from the deceased, families still have the last say. Others say they don't, that they may be informed but the legal rights of the deceased should not be abrogated, and therefore the transplantation should go ahead regardless of the family's sentiments. Where are you on that one?

Ms. Prudence Taylor: I have never experienced a family overriding the wish of a deceased. I have been with a family that was aware that was the deceased family member's wish, and they disagreed on it. Again it's how you guide that conversation, or say “Tell me why you think this was important to that person”. Generally the family come through in their own minds that now it's important for them to consider that wish.

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From my experience, families have never overridden the wishes of the deceased. Even though they knew what their wishes were and didn't necessarily agree with them for their own reasons, it became important for them to do it. So again, it's helping families find meaning as to why people made those decisions. That is all part of bereavement care, I feel.

Mr. Calvin Lee: I can't speak to why the signature wasn't on here, but one has to look at what the effect of that might be, especially if it's taken as an advance directive. Signatures that appear on advance directives usually are designated power of attorney, and there are witnesses there. The hospital may have a requirement to consult with that witness, or that person who signed, with some sense that it may have been a power of attorney. I'm speculating it could have that effect.

The Chair: Ms. Minna.

Ms. Maria Minna: To conclude, I understand that could cause some problems. It's not really a question, but I guess you're saying neither side is really right, and if legislation is passed that says the deceased's wishes are to be respected regardless of what the family feels, we may end up in a situation, if there isn't proper protocol, where it's easy not to have someone like you, because we will just go by this form and it's too bad if the family doesn't agree. You're saying that would be the wrong way to go.

Ms. Prudence Taylor: I think we also have some empirical evidence in legislation with presumed consent that hasn't had the desired effect. Both the legal and medical communities were hesitant to go against family wishes at the time of death. They felt the rebound negative effect for organ donation and transplantation in society would be worse than not allowing one family to follow their wishes.

We really need to think clearly about the consequences of penalizing families in that realm and not allowing families' wishes to be followed, especially in our society. Calvin referred to a study in Alberta that indicated significantly that families wanted to be involved in the consent process.

Ms. Kimberly Young: May I add to that, Mr. Chairman?

The Chair: Sure.

Ms. Kimberly Young: I'm a donor coordinator as well and I work with the families. Something that hasn't been brought out in this discussion yet today is the fact that knowing what may have been wished is only part of the consent process. You need to talk to that family and have them support the role you are going to take on behalf of the donor. If that family indicates they don't believe the card is true, or there was a change in the wish, you still need to work with that family to ensure donation occurs.

We need to gain the medical-social questionnaire information to ensure those organs will be safe, or as safe as we can deem them, and allow us to move forward to transplantation. Consent is a cooperative initiative that needs to be provided in a comfortable and caring way, because we need that information as well after. If the family declines and we go on, where will we get that information?

Mr. Calvin Lee: The concept of it being compulsory has been discussed in a number of ways in the committee around questions about presumed consent, mandated choice and so on. My observation has been that a focus on the compulsory element doesn't work very well at all. I think we've been saying it doesn't work on the ground with presumed consent. Medical practitioners all over the world have ignored presumed consent.

Dr. Martin has asked a number of times about the use of the income tax form, for instance, for what's called mandated choice. I think it's important that the committee consider advancing on a number of fronts in terms of enhancing organ donation.

If one makes that a compulsory element of one's income tax form, though, there can be a reverse effect. Having said that, I think it's important to include something like that in an income tax form as a choice that an individual can choose or not choose to make. If one looks at the compulsory elements around hospitals being required to report deaths, I think it's important to look at how it can now become a benefit to hospitals, how it can become administratively easier for them to do that kind of thing, rather than saying “Thou shalt”. Hospitals, medical practitioners, have very traditional authority that they can and will exercise, notwithstanding those compulsions.

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The Chair: Thank you very much.

Before we close, I just want to ask a question that has been asked before, but I want to see what the reaction is from the three of you if you choose to answer.

I think Bill Barrable referred on at least two occasions to legislation governing tissue and organ donations and the obligation to respect the wishes of the deceased with respect to donations of tissues and organs. He struck me as being pretty firm about his understanding of where that legislation placed obligation upon death. In Alberta, or in B.C., Mr. Lee, do you share the same kind of interpretation about the provincial legislation that would reflect the B.C. legislation?

Mr. Calvin Lee: I think I've just expressed how I feel. I would lean more towards a buy-in approach.

The Chair: But that's a personal view, not—

Mr. Calvin Lee: Well, I think it's also an observation of what I've seen in terms of legislative approaches and their effects in a number of jurisdictions in the United States.

The Chair: Madam Taylor.

Ms. Prudence Taylor: I think one thing is to look at the legislation that has not had the desired effect all over the United States. In fact, in Washington, Texas, and a number of other programs, this legislation has actually seen a significant drop in donation of both organs and tissues. Again, I come back to the idea that I do not think we would go for legislation such as what was described there. We would look more at the role of the hospital providing the clinical service than at placing the onus on the public within the...

Ms. Kimberly Young: And that was more the brief that I described on our process within the Capital Health area. They chose to have the front-line participants in the process mandate a guideline for their practice, rather than legislation. In the legislation in place, it says you must refer, but does it say at what time you need to refer? Does it say what interventions you need to utilize prior to referring? When a practice guideline belongs to an area, I think those in that area take ownership of it and respect that guideline.

The Chair: This has certainly been informative. All members appreciate your intervention, and we thank you very much for coming before us.

The meeting is adjourned to the call of the chair, except that we're going in camera for our future business.

[Editor's Note: Proceedings continue in camera]