Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology

Issue 14 - Evidence, May 11, 2000

The Standing Senate Committee on Social Affairs, Science and Technology met this day at 11:10 a.m. to examine the state of the health care system in Canada.

Senator Michael Kirby (Chairman) in the Chair.

[English]

The Chairman: Honourable senators, we are here to continue our series of hearings on the state of the health care system in Canada and, in particular, to continue our hearings on our first volume, which is designed to give background information and to bring people -- not only members of the committee, but those who end up reading the report -- up to date on the series of facts surrounding the current state of the health care system. We deal in that report with many of the myths that are floating about.

Today, our first witness is Dr. John Millar from the Canadian Institute for Health Information. He will present the highlights of his report, and then we will ask him some questions related to that. Welcome, doctor, and please proceed.

Dr. John S. Millar, Vice-President, Research and Analysis, Canadian Institute for Health Information: I apologize that I do not have French copies of the report here. We just could not open that vault this morning.

I thank you for this opportunity to present some of the highlights of this report to you. It is always gratifying for those of us who toil away in the field of health information to have that information put before those who are in a position to affect policy; I therefore welcome this opportunity.

This report came out on April 26. It is the first report that we have produced. It is a report that was produced in partnership with Statistics Canada. I should mention that the Canadian Institute for Health Information is an organization that was set up in 1994 by the joint efforts of the federal and provincial Ministers of Health to be an independent, non-profit organization in the business of providing the best available objective evidence on two big questions: First, how healthy are Canadians? Second, how well is the health care system performing? Our intent is to answer those two large questions.

This particular report is the second of two. An earlier report in March, issued by Statistics Canada, answered the question about how healthy Canadians are. This report is talking more specifically about the health care system, using the best available data and drawing on data at a variety of levels across the country with an expert group that involved many illustrious academics and practitioners across the country.

The first thing to draw to your attention in the report is that global question of how healthy Canadians are. This is something that I am not sure is widely appreciated. Over the past several decades, the health of Canadians has been going up and up and up, surpassing all other countries. We are now second in the world in terms of our life expectancy, second only to Japan. I would anticipate before long that we will be number one. We are increasing at a rate that is even more rapid than that of Japan, and Japan is experiencing some difficulties.

Within that overall good news story about the health of Canadians, there are some more disturbing stories, because certainly not all Canadians enjoy that high level of good health. Aboriginal people, particularly, have a life expectancy that is five, seven or twelve years different, depending on how you measure it. Certainly, people in northern, rural, and low-income, urban areas have a remarkably lower life expectancy than more affluent Canadians; so there are some problems.

You have a copy of the particular report before you, honourable senators. It does mention the life expectancy. It also goes into some details on the health care system. It documents some of the changes that have been taking place. The first and obvious change, outside of Ontario, is regionalization. Every other province is regionalized now, and they are beginning to show signs of truly being able to integrate services. That has been a major change.

The other major change is health care spending. I will show you some more details on how the spending has changed. This slide shows the public and private expenditures per capita in constant dollars. You can see that, through the 1970s and 1980s, there were constant, real-dollar increases in health care spending per capita, up until 1990, both in the public sector and in the private sector. Looking at that top graph, you see that in the mid-1990s it plateaued and began a period of real decreases in per capita health care expenditures in the public sector, whereas below, in the bottom graph, you see that private sector funding continued to increase unabated. That is the money people are paying out of pocket and through privately purchased insurance programs.

The Chairman: I want to be clear that we are talking about apples and apples. When you say "health care spending," can you tell me what services are included in that?

I ask that because, for instance, federal money for health care goes toward doctors and hospitals. I presume you are including a lot more than that. Is that right?

Dr. Millar: Absolutely, yes. I am including hospitals, doctors, some drugs, some home care, some nursing home care and some mental health services. It is mixed. The ones that are virtually entirely publicly funded are hospitals and doctors. However, when you get into the question of drugs, it is a mixture. When you get to home care, long-term care and mental health services, they are all a mix of public and private.

The Chairman: In terms of health care spending, when you say "long-term care," what are you including?

Dr. Millar: Everything.

The Chairman: In regard to nursing homes, you are referring to the full cost, some of which is funded through both public and private monies. However, when you say health care, you are including all those things.

Dr. Millar: Yes.

The Chairman: I ask the question because frequently from the federal side we use the words "health care" but we do not really mean health care; we mean medicare and hospital insurance.

Dr. Millar: This is much broader. It is all the public money being spent by federal and provincial governments on the health services that they provide.

The Chairman: As well as all the private money being spent on things that would remotely be called "health"; is that right?

Dr. Millar: Yes.

The Chairman: It is interesting to note that this report does not define what you mean by "health care."

Dr. Millar: It defines the services. It shows what services are being included.

At the very top end of both those curves, you see white dots, which are the estimates for the last couple of years showing that the public sector per capita funding has begun to increase once again in 1998 and 1999. The private sector continues to increase.

As a consequence, if you had taken a snapshot in 1997 looking at the per capita expenditures in Canada compared with other countries, you would see, as on this slide, that Canada is in fact fourth in the world among the G-7 countries in overall spending and is fourth in public sector spending. This is a very interesting slide. The United States spends more per capita out of tax dollars on health care than does Canada. They also spend more in terms of private expenditures, privately purchased insurance and out-of-pocket expenditures, than do Canadians. Yet, Canadians are almost the healthiest people in the world, whereas the United States ranks twentieth-fifth in terms of life expectancy. It is a curious observation, and there are various interpretations around it. Some people look at this and say, "Obviously, we should be spending more in the Canadian public sector." Other people say, "Clearly, no. This reflects how efficient we are being. For those public dollars we are getting such good outcomes." Other people say, "Part of the reason we are doing so well is that we are spending relatively little on health care, which frees up public money for other things like education and social services that are health enhancing." There are various interpretations of that.

There have been huge shifts going on in the way health care dollars have been spent so that the amount spent on hospitals as a percentage has dropped considerably. It is now at 31.6 per cent; it used to be in the mid-40s. Physician expenditures as a percentage share have dropped, whereas the amount being spent on drugs has been continuously increasing. Thus, that is now the second major health care expenditure.

These changes in funding and the reductions in funding have clearly created a lot of stresses in the system. It has been accompanied by a 25 per cent reduction in hospital bed availability. There has been a shift over to more outpatient services. There are many stresses that have gone along with that. One of those is that public confidence has been eroded significantly. We certainly have very well documented in this report that there has been less access to some services, such as emergency rooms and some specialist services and procedures. As a consequence of that and as a result of media attention to it, public confidence has dropped quite considerably. As you can see from this slide, it has dropped from 50 per cent or 60 per cent of people expressing confidence in the system down to some 20-odd per cent, which is quite a dramatic reduction.

On the other hand, when you ask people who have actually been the recipients of care, they express very high levels of satisfaction. That reflects the fact that the provider groups, that is, doctors and nurses, despite all the stresses, have been struggling to continue to perform to a high level. The performance measures we have show that there are good outcomes. It is an interesting dichotomy, which shows up time and time again when these types of surveys are done.

Access to services is one of the things we are very interested in monitoring; this slide shows the difference in access to physician services between the 1950s and the 1990s by income group. Back in the 1950s, the higher your income, the more likely you were to have physician services; whereas in current times, your access to physician services is the same, whether you are low income or high income.

What has happened with all these bed cuts? As I have said, 25 per cent fewer beds are available. Day surgery has doubled. The attempts that have been made to measure the health impact of this have been quite surprising to us. They are documented in the report, which shows that in Saskatchewan, where some 32 rural hospitals were closed, the overall health status measures actually improved more rapidly in the communities where those small hospitals were closed. In Winnipeg, where this issue was studied, some 15 per cent of hospital beds were reduced. In fact, the overall health status measures continued to improve as well. That was a bit of a surprise in this study.

Senator Cohen: Why did that phenomenon happen?

Dr. Millar: There is a variety of possible reasons, but nobody knows precisely the reason. One possible explanation is that, if there was a small hospital available and there was major trauma, for example, the trauma went to that hospital where there were physicians and nurses who were not used to dealing with that level of trauma. As a result, there may have been delays in getting to the level of care needed. People are now going directly to a higher level and better qualified service.

Another of the major problems that the report shows -- and everyone knows it is true -- is that there has been emergency room congestion. This slide shows that that emergency room congestion is reflected by headlines. Those headlines from right across the country have tended to occur in December, January and February. It has been well shown in more detailed studies that that is connected to the annual flu epidemic. Much of the congestion, both in the emergency rooms and in hospital beds in that period of time is driven by respiratory disease and can be attributed to flu.

What has been shown in some more detailed study across the country is that, where there is good information on the reasons for that kind of congestion, programs have been put into place that have dealt with it. As the chair of the CIHI board is fond of saying, "You cannot manage what you cannot measure, but where you do have good measurement you can manage it."

In Winnipeg, they brought in a program under which they increased flu immunization. They made the admissions and the discharges more efficient. They provided more bed availability during the peak season for flu. They provided more beds in the communities so that they could move bed blockers out of the hospitals. As a consequence of that intervention, they were able to avert the emergency room congestion that was experienced by many centres, such as Toronto, in the past winter.

What is going on with providers? It is not surprising that there is a lot of stress in the system, in particular among nurses where there is very good data now that shows that, amongst all the workforce categories, nurses are suffering more time off, more disability, more back pain, and so on. The nursing profession is clearly suffering. Nurses are also getting older.

The same thing applies to physicians. It is very much an older population, and the number of physicians has been declining slightly.

We are very interested in prevention and outcomes. In terms of some preventive measures, some data in here looks at mammography, for example, and early detection of breast cancer. It shows that there are quite considerable differences by province in the achievements being made there. Similarly, in immunization, although we believe one of the big areas that we do not have good data on in the country is immunization rates, we do have good data on communicable disease rates, and it is a goods news story there. We have been able to eliminate smallpox and polio and almost eliminate measles, and there is good news around immunization. However, there are many ongoing challenges in getting good data and trying to bring everyone up to the same level of high performance.

In terms of appropriateness of care, we have taken a look at the caesarean section rate across the country. The WHO recommends a caesarean section rate between 10 and 15 per cent. The overall rate in Canada has been climbing over the last few years. There was an attempt through the Society of Obstetricians and Gynaecologists of Canada to reduce the rate, and it went down for a while. However, it is back on the rise again. In some jurisdictions, they do extremely well. There are jurisdictions in Quebec, for example, where the caesarean section rate is as low as 13 per cent. There are jurisdictions on the West Coast that are up in the 25 or 27 per cent range. There is a huge variability. We do not have a full explanation for that at this time.

Senator Carstairs: Do you have statistics based on the time of day at which the C-sections are done?

Dr. Millar: No. It is not recorded in our database as to what time they are done.

The Chairman: Why did you ask that?

Senator Carstairs: Anecdotal experience would tell that you C-sections are done so that doctors can get a good night's sleep. They are not done between midnight and eight. They tend to be done up to midnight. If the labour is going to progress longer through the period of time, the C-section is done.

Dr. Millar: Our intent here in providing this data is to have that type of analysis done by the managers and providers at a local level so that, when they do have very high rates, they can identify exactly that kind of issue. We also know that in some areas it is driven by women's preferences. Some women prefer to have caesarean sections. There is a variety of explanations there.

In terms of outcomes, there is a recurrent theme in this report about the things we do not know. Again, it comes as a surprise to many people when they realize that we cannot report on good outcome data for many procedures that are done. Where we do have those data, we have presented it.

We do have an organ replacement registry that is operated by CIHI. From that, we have been able to show that the survival rates for kidney, heart and liver transplants are comparable across the country. There is good performance right across the country and good performance by comparison internationally. It is similar with communicable disease control and with rehabilitation outcomes. We do have some outcomes in those areas. It comes as a major surprise to many people that, for example, the leading cause of deaths is, as I am sure Dr. Keon has made known to you and to others, heart disease.

We cannot report on outcomes for acute myocardial infarction, how many people live and die, in a standardized way across the country. We simply do not have that data. We cannot report on how well people do with cancer or for major trauma or diabetes or for many of the common disease entities. We simply do not have, at the moment, any routine outcome reporting ability. We are working on that, and I am confident that in the course of the next few years for which we have the funding, we will be able to begin to fill in some of those blanks.

There are many other questions that we cannot answer. We do not have very good expenditure data at a regional level or by sector. As I have mentioned, we do not have good information on outcomes. We do not have good wait list data. One of the hottest political issues is how long people are waiting for procedures. There is no standardized way of reporting that. Safety is another major concern of the public: when people go into hospital, will they get the right treatment at the right time? That is an area that we regard as a high priority, and we are developing ways to attempt to measure that.

Mr. Chairman, I will stop there and attempt to answer any questions you may have.

The Chairman: Thank you. May I ask you some procedural questions? Procedurally, do you intend to produce an annual report?

Dr. Millar: Yes, we are committed to producing an annual report. It will not necessarily be as biblical as this. We will certainly have not only an annual report but also a series of reports coming out through the course of the year reporting on various aspects of the health care system.

The Chairman: We should make sure that when those come out, they go to all members of the committee. On your list of unanswered questions, I picked the "waiting line" as an example where you say there are no data. Are you in the process of putting in place an information system that will get that data?

Dr. Millar: Yes, we are. We already have in place a system that will be able to provide standardized information on emergency room wait times. That is in place, and we expect to have data flowing there within the next year. When it comes to waits for heart transplants or cardiac care or cancer treatments or cataracts or hip replacements, those are more difficult, but we are attempting to work with various professional groups to get those kinds of wait times as well.

The Chairman: Do you hope to be able to get that information in the next year or so, or is that some distance off?

Dr. Millar: I would hope to have some of those in the next year or so, but it is a struggle. It is not easy to do.

The Chairman: To the layperson, it sounds like it ought to be a no-brainer.

Dr. Millar: It is very difficult. You can read in the report quite a detailed explanation of all the issues around something as straightforward as trying to figure out how long you have to wait to get coronary artery bypass surgery or an angioplasty intervention. You need to define that, first of all. When do you start measuring? Is it when you get your chest pain? Is it when you first see the doctor or a specialist? Do you start it when you first get your catheterization? How do you track all those things? We do not have any databases starting as early as when someone sees the personal physician. The databases in primary care are absolutely and utterly dreadful in this country -- as they are in every other country. Bad as it may seem, and despite the amount that we do not know in Canada, we are still ahead of the pack. It is not as if anyone else is doing it a lot better. Australia is doing it better, but it is about the only country that is clearly ahead of us.

The Chairman: We are ahead of the pack because we are a single-payer system.

Dr. Millar: That helps a lot. As well, we do have some big databases. So far, issues like Bill C-6 have not limited the ability to share that data.

The Chairman: We have been through that in this committee, as you know. I should say to senators that all of the overheads that the witness used are in the report, along with a wide variety of others.

We have heard statements that would say roughly the following: Of the amount of health care services provided to an individual, some 30 or 40 or 50 per cent is provided in the last six to twelve months of an individual's life. In other words, the cost of medical care that an individual receives goes up enormously as the individual nears the end of his life. Is there any hard data that gives a number to that?

Dr. Millar: How much is consumed by people over a certain age?

The Chairman: No. Let me tell you where I am headed. People have said that the aging population is one of the big drivers of cost. My question is whether it is the aging of the population or simply the fact that as you increase life expectancy the costs associated with trying to delay death as long as possible in fact inevitably occur at an older age.

In other words, does a healthy 70-year-old put any more drain on the system than a healthy 50-year-old? Conversely, if a 55-year-old has cancer and is dying, is there any reason why the cost of that treatment should be less than the cost of treating a 75-year-old?

Dr. Millar: I would like to rephrase the question in the way I think about it. Clearly, we are living longer. The corollary to that is: Are we living healthier or less healthier? If we are living more healthily, then we could anticipate that the costs would not necessarily go up as we age. The early demographic findings published fairly recently by Statistics Canada indicate that we are living both longer and more healthily. Therefore, the anticipated impact on the health care system is not necessarily as severe as we once thought it might be.

The Chairman: To get back to my first question, we have heard from some witnesses whose basic thesis is that as someone gets really sick and ultimately dies at the end of that process, they consume a very large amount of medical services in dollar terms in an attempt to delay the end. Do we have any measure of what that costs? I am asking that because it seems to me that, if it is correct that that is a disproportionate amount of the medical services one consumes in a lifetime, then it may be that more than demographics is actually driving the change. That is to say just because people live longer then, by definition, they do not die until a later age. We seem to be focusing entirely on the age of 65, or on the number, rather than the fact that it is simply a reality that always through life, whenever it is time to die, it is that last six months that is really very expensive.

Dr. Millar: I am not aware that anyone has done the projections that we would need to come up with a valid answer. Projecting is a tricky game. Generally, we have avoided putting a lot of effort there.

The Chairman: Is it your feeling, therefore, that some of the bold statements of fact on that issue that we have received should be looked at with some scepticism?

Dr. Millar: Yes. I certainly would.

Senator Carstairs: In looking at what you have provided I have come across two or three charts in which data for Manitoba was not available. Since that is my province, can you tell what the explanation is for that?

Dr. Millar: Could you refer me to a specific chart, senator?

Senator Carstairs: I am sorry, but I cannot.

Dr. Millar: Manitoba is featured quite positively in this report because of the Manitoba Centre on Health Policy and Evaluation, which does superb work and which has provided a great deal of good data.

The Chairman: There is a chart on page 43 headed, "How Babies Are Born." There are only eight provinces listed. You do not have Quebec or Manitoba.

Senator Carstairs: It states that Manitoba data are not available.

Dr. Millar: The reason for that is that Manitoba and Quebec do not participate in one of our databases, which is the discharge abstract database.

The Chairman: Why not?

Dr. Millar: Because they have their own wonderful system, they do not really need us. They have high quality data. However, there has never been a sharing agreement set up so that we can capture it. It represents higher quality rather than less quality.

Senator Carstairs: That is the point I wish to make. If we are to reform the system, then we have to be willing to share all our information with one another. The fact that they are not included in this -- and I knew they had better information, as a matter of fact -- disturbs me because there does not seem to be the desire to share.

Dr. Millar: We would welcome any interventions in that area.

Senator Carstairs: I will do what I can. The second last slide is a glimpse inside the system. It has to do with rehabilitation outcomes. I was quite surprised by what I saw. It seemed to me that the improvement in functional status under joint replacement was very small. Yet, we hear constantly, from the elderly in particular, about the constant need of joint replacement.

Dr. Millar: It is an interesting observation. You will notice that this is under rehabilitation services. There are many things you can do for someone who has had a spinal injury and, over the course of time, see big improvements. For someone with an amputation, there is not much that you can do over time. I suppose that is a reflection of the degree to which you can expect to see change. This does not tell you what the expected change is. It just tells you what was achieved. These data were drawn from a pilot study that is beginning to explore the types of outcomes in the area of rehabilitation. It is like an early snapshot.

Senator Keon: I am really pleased to see the first report, which I think is a great beginning. Do you happen to have the flu data province by province? I think there is something very interesting falling out there, at least anecdotally. For example, Alberta boasts that the flu wave hardly affected them because of their regional organization and so forth. Ontario was hit the hardest because there is no regionalization. Do you happen to have graphs for each province?

Dr. Millar: They are available, but we do not have them in that format. They could be looked at, but I have not seen them in that way. They come from LCDC at Health Canada.

Senator Keon: It would be interesting to get them out before next year's epidemic, because this is one loop where we could have feedback almost immediately.

Dr. Millar: Indeed.

Senator Keon: Senator Carstairs referred to the end of your report and the short rehab section that continues on to home care. As the report indicates, this is just a beginning. I have felt for a long time that this is one of the areas that have to be addressed and organized.

Do you have in place a mechanism for looking at other countries that have invested a lot in this area? I am thinking in particular of Germany. About 20 years ago, they invested a great deal of money in rehab centres, which they built all over the country. They then found that they had a dysfunctional program from which they could not withdraw people and so forth. In your report you present continuity in terms of home care and rehab, which is terrific. What template are you trying to develop to look at this?

Dr. Millar: When developing indicators, wherever we can we are doing it to conform with international standards, if there are any. It is very easy for things like life expectancy, where there are some standard methodologies. The fact is that for many of these things we are the cutting edge. We are ahead of most other countries, so there are no comparative data. We are just inventing them on our own and hoping others will follow our lead. In fact, that is the strategy we are taking within the country. For example, the cardiac care network in Ontario has set a standard. We are encouraging that to be picked up in other parts of the country.

Senator Keon: How are your links unfolding with provinces like Manitoba and ISIS in Ontario? Are you getting direct links from there or is your information coming in through periodic reports or information-gathering sessions?

Dr. Millar: For most provinces, the links are very direct and they participate fully. We operate 14 databases for expenditures, organ replacement, major trauma, et cetera. There is a number of them. In most of those there is full provincial participation. There is this exception of Manitoba and Quebec for the biggest database, which is the discharge abstract database. By and large, there is very good cooperation with the provinces.

With specific organizations like ISIS, we also have a good working relationship. ISIS draws on our data for many of the research projects they do. Having said that, we are certainly looking for opportunities to develop further partnerships with whoever is interested in better using these data that we hold.

Senator Fairbairn: This looks like a very interesting publication. I am sure many questions were asked by you in terms of building this mechanism to get information.

I am particularly focused on the final part about home care and institutional care. I did notice the headline that everything old is new again with home care in Canada. This is one issue of the new health care system or the new health care reality in Canada that we need to know much more about -- not only where it exists but how it works. I guess it exists in every province of Canada. How it is connected to the hospital and the physician is one of the big questions, because sometimes those connections are very shaky, although the program in theory may be good. At this point in time, are you able to make any comparative comments between provinces in Canada, or are you still at the point where you are trying to get that kind of information? Is that information available right now?

Dr. Millar: At the provincial level, you could get comparative data on expenditures on home care and long-term care, but if you want to look at any sort of performance measure, there are none. The good news is that one of the many projects that we have underway is to develop better expenditure data at the regional level so that we can start to get a handle on how much money is going into all the various sectors, including home care and long-term care. Another project is looking at continuity of care indicators. That is one dimension of performance across the system that we are trying to develop, and we are working together with the Canadian Health Services Research Foundation to get some continuity of care indicators. In addition to that, there is a specific project looking at performance indicators in home care and long-term care. In the continuing care side of this, there already are data standards. A private company has developed a minimum data set, and that is now being picked up across the country. We are sort of the mediators for that. That is coming on stream quite quickly.

On the continuing care, the institutional side, I am optimistic that we will have good data that will provide us information on performance on the institutional side of community care. On the home care side, within the scope of the projects we currently are running, we may not have the data, but we will have developed the indicators and the data definitions and can begin the process of having them taken up by the provinces.

Senator Fairbairn: I am sure that we all in this room have had experiences of one kind or another in respect of home care. I have had two -- one in Alberta and one here in Ottawa. It struck me that it would be very useful were information available. Some of the gaps in both of those provinces were in totally different areas. People could learn from other people's strengths and weaknesses. Already we are hearing in the study that we have just started that this whole broader definition now of health care being in the home and the community is probably one of our greatest challenges.

Dr. Millar: I agree. It is a major challenge to find the performance, and you must also ask whether someone is being well-helped to move through that system appropriately.

Senator Fairbairn: To find their way through.

Dr. Millar: Yes.

[Translation]

Senator Gill: You said that your Institute had two major objectives: the report on the health of Canadians, and evaluating the performance system. How can your recommendations be implemented? You referred to the standardization of services, in comparison with other countries and among the regions of Canada. How could your recommendations be implemented across the country? Once the recommendations are made at the national level, how do you take geography into account? How and where can your recommendations be implemented?

[English]

Dr. Millar: Our organization is not mandated to make policy recommendations. Our mandate is to provide the very best possible information to put into the hands of policymakers so that they can use the information to develop policy. Our task is to get the best information, but not to make policy recommendations.

How do we envision the data being used to be relevant both internationally and between regions? We envision that the data is being provided to the governors of the system -- ministries of health, regional health authorities and so forth -- and also to the provider groups and the managers in the system, and also directly to the public. We are targeting this data at several difference parts of society.

For the managers and governors in the system, the intent is to support the development of better policies. For the health care system providers, this is clearly intended to support improved quality of service, the continuous quality improvement of service. A very practical example of that would be the C-section rate. For example, the C-section rate in Victoria, B.C., is 24 per cent. That has already stimulated people to pay more attention. They would go to one of the jurisdictions in Saskatchewan or Quebec that is down around 13 or 15 per cent and say to them, "Well, how did you do it? How did you get your rate cut in half like that?" It is to provide that ability to improve quality. Then, by getting this data into the hands of the public directly, we believe that with a better informed public you get, in fact, better governance, ultimately, and better accountability for what the public is getting for its money.

Those are the ways in which we are disseminating this information into various sectors to have its impact, but, again, not making direct policy recommendations.

[Translation]

Senator Gill: Do you have any data about Aboriginals and, if so, how did you get it? Who do you deal with at the national level?

[English]

Dr. Millar: The question of aboriginal health is very difficult. We do have data on health status, how healthy they are, and we know they are much worse off, although the gap between aboriginal and non-aboriginal is improving. There are generally improvements in both sectors. There still continues to be a huge gap, and it is the most egregious gap in the country. Aside from that, we have very little data. For example, when First Nations people go into hospital, their status is not recorded on the data, so we have no way of tracking that. We do not have any routine way of discovering what level of services they are getting or the outcomes related to that service. Any data available is mostly done on the basis of surveys. There have been some recent aboriginal health surveys. The best available information is in some Health Canada publications that have recently come out. If you refer to those, I think you will find that that is as good as it gets. We have very little in our database that can help shed light on that.

That being said, there is one area where we can help. Although we cannot identify specific aboriginal people within communities, there are communities in the country where they are largely aboriginal folk: Northwest Territories, Yukon, Nunavut, northern areas of Manitoba and so forth, Saskatchewan, B.C. and Quebec.

We can do small numbers analyses in those areas and provide the same type of data by region, as you see in the back of the document, and then go down to smaller regions. We can provide this type of array of data, which gives some sense, then, of how those largely aboriginal communities are being served and the outcomes related thereto. That is an area on which we are moving ahead.

The point I am making is that that will not be specifically aboriginal; nor will it be able to split out Métis from Innu or Haida.

Senator Fairbairn: Would it be the case, then, that in any given hospital you would not have a picture of the clientele of that hospital, whether it be aboriginal or people from other backgrounds? In other words, is there any way in which we can define that hospital population?

Dr. Millar: There is only one database that we have in which ethnic information is entered. That is the Canadian Organ Replacement Register. That captures, for example, aboriginals, Vietnamese or whatever you want. Aside from that one database, hospital databases do not record that. That has been at the wish of the ethnic groups themselves, who do not want to be identified.

The Chairman: You said earlier that, overall, lower-income people have a lower quality of health. You also said that lower educated people and rural people have lower quality of health. We recognize that the vast majority of aboriginal people in your database would be low income and rural. Therefore, even if they were not aboriginal, they would not have as good a health record as the average Canadian. Can you adjust your data to understand how much, beyond the fact that they are low income and rural, owes to the fact that they are aboriginal? In other words, I am trying to understand if you can isolate the aboriginal parameter alone or if the aboriginal data is in part because they are aboriginal and in part because they are low income and rural?

Dr. Millar: I can answer that question from the literature in broad terms. We know that racial or genetic factors on a population basis have a very small amount of explanatory power in explaining these differences. The Japanese are the healthiest people in the world and have been for 25 years, in terms of life expectancy. However, when Japanese move to another country, like Hawaii or California, then, by and large, they take on the same mortality patterns as the country in which they live. The aboriginal data all point the same way. This is not a question of being aboriginal. It is a question of having low income, low education, low employment and systematic exclusion from opportunity.

The Chairman: What about the fact that they live in rural areas?

Dr. Millar: The same thing applies in downtown Toronto or downtown Vancouver.

The Chairman: The data one talks about is aboriginal data because for various public policy reasons Canada has a different responsibility for aboriginal health. In fact, it is really a commentary on education, on income and a variety of other things for which we happen to have one particularly identifiable subgroup. Is that fair?

Dr. Millar: I absolutely agree with that.

The Chairman: I thought that would provoke a rebuttal from Senator Gill.

Senator Gill: How do you explain the huge increase in diabetes among aboriginal people? If it is not cultural, how do you explain it?

Dr. Millar: There are wrinkles in this story. I said that there are some small explanatory powers. It is not as if it does not have any. The first time I discovered this was when I was a medical officer in Prince George, B.C. I arrived on the job and found that they had a 50 per cent higher death rate. Immediately, when that hit the papers, everyone thought it was because of the pulp mills or that they drank too much. In fact, what we found is that they die more of heart disease, of cancer, of respiratory disease, of diabetes, of suicide, of homicide, of motor vehicle accidents -- more of everything. The pattern that has been shown time and time again is that, where you have a population of people dying more, they are dying more of everything. That is because they are simply more susceptible to getting sick and dying from whatever happens to be around. It is not to say that genetics is totally irrelevant. It does come into play. However, the powerful drivers are those things that make people more susceptible to disease. Those are related more to income, education, jobs, early childhood care, community cohesiveness, and so forth.

Senator Cohen: I have a question about immunization in Winnipeg and the successful results of cutting down emergency room delays. How is that information disseminated across the country, for example, to New Brunswick? The answer may be similar to the C-section answer. Is this report the first issue?

Dr. Millar: Yes. The Manitoba Centre for Health Policy and Evaluation routinely produces reports as well. The underlying information that led to the policy developments in Winnipeg had already been published. It does not get huge media attention. This is an attempt to add to the dissemination of that type of knowledge.

Senator Cohen: Wouldn't a simple solution be to immunize the people, and thus have less of a back up?

When Dr. Fraser Mustard visited us a few months ago, he said that a lot of the diseases of old can be traced back to the first five or six years of a person's life. Have you done any studies on that in conjunction with this report? Where did he get his statistics? It seems that we are very advanced in our medical knowledge, but in our information gathering and data we are almost primitive.

Dr. Millar: You have to understand that this report is an attempt to get standardized comparable data in every region across the country. That is a far different thing. Dr. Mustard's work is all based on research studies -- small, intense gatherings of data for a very specific academic purpose.

Senator Cohen: That could impact on health.

Dr. Millar: That is right. To answer your question whether we are doing anything in this area, we certainly are. CIHI received $95 million from the federal government a year ago, February, for three major projects. One of those, which will account for $20 million, is the Canadian Population Health Initiative. That is doing further research work in particular in the area of population health. One of the areas that will be researched is that early childhood piece.

One thing I should mention is the fact that at the moment, amongst all the indicators that we are trying to track in here, we do not have one for early childhood. We cannot say how well children are doing, region by region in the country. There has been an indicator developed at McMaster. It has been piloted now. One of the places in which it was piloted was Winnipeg. It is showing some results. Fraser Mustard has been part of that as well.

We are working with HRDC, McMaster, Statistics Canada and the Conference of Ministers of Education across the country to see if we cannot get that in place. It is used when children hit kindergarten. It can be done by the kindergarten teacher. It is not used as an individual way of identifying problem children. It surveys the whole class of kindergarten kids and captures how well they are doing in their ability to read and recognize words, and it tracks their numbers abilities, their social behaviours, their classroom behaviours and their emotional development.

It captures an array of about five or six dimensions and gives you a snapshot of how well the kids are doing at a given community. It relates that to the availability of things like qualified day care and various things. There is a community mapping piece that goes with it. It is very cost effective. We could assess every child in the country for as little as $4 million. This is something that we are trying to actively get in place as quickly as we can so that we can capture that very important dimension.

Senator Cohen: This would also give us a snapshot of the low-income population and what the results can be when you do not have access to healthy eating and life-style. That sounds interesting. It will be very informative for those of us who are not in that profession, such as myself.

The Chairman: Dr. Miller, your last answer says to me that there is a lot to be said for putting much more money in prevention rather than cure, and prevention starting at a very young age. Is that a reasonable conclusion?

Dr. Millar: It is, certainly in the area of early childhood. The data has been well examined, and repeatedly examined. The business case on this is very solid. The number that springs to mind is that every dollar invested in good early childhood care saves about $7 in the public sector over the subsequent 20 years. It saves in terms of health care costs, justice system costs, and so forth.

Senator Fairbairn: I am very glad that you gave us a vehicle to get that answer. I was going to ask how, if at all, you were able to factor a literacy component into any of your statistics.

What you have said on the early childhood side is critical. This committee has already heard one of our presenters comment on the other end of the scale, which of course can show you how the cost escalates. With our senior citizens, we can have up to 65 per cent having difficulty, for a variety of reasons, including skills, being able to read and understand prescriptions and medical advice. Anecdotally, the Canadian Public Health Association is considering this a distinctive enough problem that they are devoting their national meeting this year, a few weeks from now here in Ottawa, to how literacy levels affect every level in our society.

The early childhood effort will give us a tremendous benefit and is much easier to do than when you get up into other age groups. Do you suppose there is a way that you can find mechanisms to measure against literacy skills, against learning skills, in adults?

Dr. Millar: Literacy is a tricky area, and I am not an expert in literacy measures. You probably know that, if you look at international comparisons, it says that 98 per cent of Canadians are literate, or 99 per cent -- a huge number, but we know that that is not addressing the issue of functional literacy.

Senator Fairbairn: Then over 40 per cent have problems.

Dr. Millar: To get data on that by region requires surveys that are quite labour-intensive to administer, I understand. The other major endeavour, as part of this present project, is with Statistics Canada. They have $40 million of the $95 million. A good deal of that money is going into the Canadian community health survey. That will capture many things of interest, like smoking rates and diet and obesity and physical activity, but it will not capture literacy because of the difficulties of capturing that in a short survey instrument. It remains problematic. I am personally not aware of anything on the horizon that will do that in a systematic comparable way across the country, but I may not know about everything that is going on.

Senator Fairbairn: Starting at the beginning is the best way that we can solve the problem.

Dr. Millar: We could get it at least at the kindergarten level, which I agree is a perfectly reasonable place to start.

The Chairman: Going back to your opening slide, you talked about Canadians spending less than some other countries per capita and nevertheless being healthier. Is it a reasonable conclusion from that, and from some of the other data in the CIHI report, that it is difficult to draw a direct correlation between increased funding for health care and the increased health of Canadians?

I ask that because federal and provincial governments of all stripes get huge publicity by announcing an extra billion or million or whatever for health care. I think the average citizen reading that headline says that is a good thing because the health care system will be better and therefore Canadians will be healthier. Your data leads me to suggest that that conclusion is not obvious. It is certainly not obvious that, if you put $2 billion more in, you would get twice as much improvement as if you were to put $1 billion in. Is that true?

Dr. Millar: It is true to say it is complex. You must be careful to define what it is you hope to achieve. I think that is the key here. It probably would not change much in terms of life expectancy, because we are already at a very high level of that. Dumping more money into the system is not really meant to do that. We are really meant to be providing services that people need to achieve better health measured by other means than life expectancy. If people are getting a hip replacement and they are pain free and can function better, then they are healthier, but we do not capture that by life expectancy. I think a large part of the drive for more funding is to provide better services that do in fact often make people healthier.

The Chairman: Better and faster.

Dr. Millar: Yes. The flip side of this is the point I made earlier about why it is such a political issue and why it is so important that it be addressed politically. The more money that goes into the health care sector, and as you know that is now up to 40 per cent of some provincial government budgets, the less that is available for other things like early childhood care. There is always that balance that one has to trade off, and that is very important.

The Chairman: In light of what you said in response to Senator Cohen, investment not in health care but in something else may in fact in the long run have a bigger impact on health care than the direct investment in health care.

Dr. Millar: Precisely.

The Chairman: Thank you for attending today. Will you please tell your colleagues at CIHI that, as they get various reports, not only would we want them circulated to the committee, but as long as we are in the process of doing this study we would like them to come to the committee and take us through them?

Dr. Millar: Certainly.

The Chairman: Senators, our next two witnesses are Professor Margaret Somerville from McGill and Professor Laura Shanner from the University of Alberta.

Welcome, and please proceed.

Ms Margaret Somerville, Professor, McGill University: Thank you, senator. I have submitted two papers to the committee. One is an article entitled, "The ethics and law of access to new cancer treatments," which deals with the access issues at an individual level. I have also submitted a draft of a chapter -- and I will do a bit of advertising here -- from a forthcoming book that I have called, The Ethical Canary. There are two chapters in that on health care allocation, access, and ethics resources issues.

I would now like to make a few pointed remarks.

The first point to make -- and it is one that Professor Shanner will expand on -- is that ethics is not simply a matter of good conscience. That is essential, and we have to make sure we have it, but it is much more than that. It is a structured analysis in which we look for the values, and when we have conflicting values, we try to justify the choices we make. That is really what we have to do in limiting health care resources ethically. We have a situation of enormous complexity, and, unfortunately, enormous, unavoidable conflict. I want to speak at an even larger level than the previous witness, than just the health care system itself. I want to speak at the societal level, because in what we can call post-modern, secular, pluralistic, multicultural, western democracies -- all adjectives that apply to Canada -- we think that health care is the most important societal institution in value carrying, formation, and promotion -- and, if it does not do those things well, value destruction -- for the society.

There are many reasons why we have great difficulties in dealing with medicare, but I should like to discuss one in particular. I think Canada is probably the strongest example in the world of this. I come from Australia, so I am relatively familiar with their system, which is not dissimilar to ours, but the fact that Canada has always placed such a strong emphasis on a publicly administered, egalitarian system, and that there has been largely, to put it at its mildest, an inhibition of private health care, makes it even more important in terms of those values or functions at the societal level as a whole. Therefore, whatever we do, we are not just thinking about, does some person or some population get better health care? We are really thinking about, when we make those decisions, what are we doing at that values level?

Health care is so important because, whereas in the past, most of our communities created what you can call their "cultural-societal paradigm," which is really just a shared story that we all buy into, mainly through religion, in our kinds of societies, we have to create it through a secular institution. We usually create it through an institution that carries a value of caring for each other, because caring for each other is actually the existential glue that holds us together as a society. An institution that can carry the value of caring for the whole society can equally carry the value of not caring, if what we do is either not care or even just appear not to care. I think some of the outrage that we are seeing in Canada -- and I get lots of calls in my office -- is because suddenly people feel that they are not cared for any more or that there is not an appropriate level of that value of caring. Therefore, when we make these decisions, we have to keep those other, metaphysical aims and possible damages in mind.

The other interesting thing about this situation is that every one of us in Canada is in a conflict of interest, and the reason is as follows. As a taxpayer, I do not want to pay more tax; in fact, I would like to put in a strong plea that I might be allowed to pay less at some point. On the other hand, when I am sick and I go to the Royal Victoria Hospital, I do not want someone to tell me they cannot afford to treat me, or that I have to wait six months for something that should be done now, or that I have to be sent to the United States for radiotherapy treatment or whatever it might happen to be. We have this ambivalence inside ourselves: Yes, we want health care to be right, especially when it is for us or those we love; and no, we do not want to pay any more tax.

Another problem is that part of our societal vision of health care has been founded on the myth that we did everything possible, in terms of health care, for everyone who needed it. Our new information age has absolutely shattered that myth. I think that is only going to become more true.

I see the challenge as how to keep those features of the system that we need, not just for practical health care on the ground but as a Canadian society, and at the same time face the reality that we cannot do everything for everyone that would be of benefit for them, in terms of health care.

It is an incredibly difficult challenge to work out how to do that. I think we have been doing it on a piecemeal basis, we have been doing it according to what hits the front pages of the National Post or The Globe and Mail, and we do not have a coherent approach.

I think there are a multitude of suggestions that we could make, but I can only mention one or two of them. One is that we know that our society is no longer based on what is called "blind trust", which says, "Trust me, because I know what is best for you and will look after you." That is a paternalistic system. We see that very forcefully in the area of medicine in particular. With the requirements of the doctrine of informed consent, which Professor Shanner is going to talk about, we have changed to what is called "earned trust." That says, "Trust me, because I will show that you can trust me, and you only need continue to trust me while I continue to earn your trust." Blind trust, by contrast, is based on power, status, and authority. You will not have trust present if it is based on earned trust and you are not earning it. Again, I think there are problems in the health care system right at the governmental level. I would suggest to you that a lot of Canadians are not sure that their trust is being earned at the level of whether health care will be provided for them and those they love when they need it.

In that respect, I think you need to do some very particular soul-searching as politicians. I think I can call you politicians in the Senate, although in some ways perhaps you are not. One of the most unpopular suggestions I have made to politicians is implicit in the question of whether it would be ethically required of you, as the decision makers about what will constitute our Canadian health care system, to be absolutely subject, as any ordinary citizen would be, to the basic access to that system? In other words, do you, when you are older and influential, politically well connected, socio-economically well-off, get a transplant if someone who is just an ordinary, average Canadian, would not? This is a very difficult question, but I think it has to be faced.

One way to look at health care is to see it as a lifeboat, and realistically, that is what it is. No matter how much we talk about putting money into early childhood care, which I think is ethically required and good, ultimately, we still face maximum health care costs for people when they are older and chronically ill and, later on, dying.

The only difference is that we face them at 80 or 90 years of age instead of at 50 or 60 or 70. We still face them, unless people simply drop dead, which is becoming less likely with our new health care. There is now more that we can do, that we can afford to do, and the real ethical challenge is to work out how we can make those choices without being unethical either in the health care system or in the larger society.

I would also point out that we have grossly underdeveloped organizational or institutional health care ethics at the moment. We have fairly well developed clinical ethics. That is important, because the ethics can differ at the different levels. There are essentially four levels: The micro or individual; the meso or institutional; the macro or societal or governmental; and we have added to that recently the mega, which is the global level, which can also indeed influence our health care. In fact, one of the things most influencing Canadians' claims for very high-tech, high-level health care currently is they are going on the Internet and seeing what is available, particularly in the United States.

One of my colleagues who is a physician phoned me the other day to say he does not know what to do because he is absolutely beside himself about lack of time. He has people coming into his office who have received a diagnosis, who have gone on the Internet, who have 200 pages of print-out, and they sit down and they say, "Doctor, I would like to start here and discuss this with you." He phoned me to say that he was telling them, "Look, I have 20 minutes to see you. We can do one of two things. We can either talk about what you found on the Internet, or I can examine you and see how well you are doing and prescribe what you need, but I do not have time to do both."

We are fuelling people's claims at the very time that we cannot provide for them. This has been referred to as "the cost of our success." If we had failed, we would not be here today because there would not be anything we would have to worry about being able to pay for or not. It is because our medical research been so incredibly successful, especially in the last 15 years, that we have those dilemmas. They will not go away. They will increase. We need structures within which we can make these decisions.

To conclude, we are in a bind because we have two conflicting aims with medicare. There is the very practical aim of providing health care on the ground at a reasonable level with reasonable access to all Canadians who need it. At the same time, medicare carries a vision of our Canadian society and its values. It must operate on both those levels. What might be reasonable for one of those functions may not be for the other.

After thinking about this and writing it down, I came to the conclusion that if we want it to continue to function as a very important, value-creating mechanism, probably we have to give the most attention to what we need to do in practice in providing health care. No matter what we say, if we do not do that, people will not find the values that they need in our health care system. We should keep in mind it is often said that the ethical tone of a society is best tested by how it treats its weakest, most in need, most vulnerable members. For most of us, the only time we experience that is when we are sick. It is very important then.

The Chairman: Thank you. I will ask Professor Shanner to make her comments.

Ms Laura Shanner, Professor, University of Alberta: Thank you very much for inviting us here today. I will confine myself to some very scattered remarks to which you can refer later. I have previously made available a copy of an extended outline with this set of titles. It cannot possibly be read in 10 minutes, so I will not even try, but I will hit some highlights. I have also included a chapter I wrote for a health law practice manual on theoretical approaches to health ethics and its relationship to the law.

To start, we might even define ethics. One key element is that it regards others. Selfishness or self-regard is never considered an ethical principle or framework. There is, of course, reasonable self-interest insofar as we do not need to destroy ourselves in an effort to save others. There is a point at which our interests must be held to be equal with those of others. There may be times when we must accept sacrifices or compromises because the needs of others are more overwhelming.

Universality implies that anything I would expect you to do, I must expect of myself. Professor Somerville mentioned justification. This is not an attempt to find good-sounding, ethical words to justify the decision we were planning to make anyway. It is, instead, a requirement that we go back to the beginning, decide what we are trying to achieve, what issues are at stake for everyone who may be affected by this decision, and then to work through not only the most practical set of outcomes and mechanisms, but also juggle the values and the interests of everyone involved.

Finally, ethics must always concern itself with matters of the most serious importance -- of course, our health, our opportunities in life, our degree of suffering, and the fact that most of our health care interventions arise in poignant human moments, like the birth of a child or when we confront our own death or the deaths of loved ones. Health care is inherently infused with ethical concerns simply because of its nature.

I point out that public policy is also infused at all levels with those same sorts of concerns. The justification or the point of a policy body is to coordinate the efforts of all in the community to achieve things that are very important, and that we simply are unable to achieve working alone. Once again, the welfare of the community, our opportunities, our overall health status, our ability to succeed together, are very important to us individually.

Finally, it has been said that you cannot manage what you cannot measure. From an ethical perspective, I would refer to you Howard Brody, who pointed out that sometimes the measurable drives out the important. What is important? There is a very long list of different values that infuse our entire lives, not merely health care or health policy. However, in both health care and health policy, the attention to ethical values must be extraordinary, much higher than is required in our daily lives. I will talk about a few of these in greater detail.

The core of health policy tends to focus on the balancing of individual and common interests. One way of understanding this is that the protection of those who are most vulnerable, and respect for persons or individual autonomy, may very often be in conflict with what is just or fair, or with what is good in terms of the best outcomes.

I suggest that, as we try to balance these individual and common goods, you imagine that you are wearing bifocal glasses, of which one lens lets you see up close. In health care, it would be the patient and the patient's family and loved ones for whom nothing is more important than relieving the pain, delaying the death, achieving a healthy birth, and related concerns. At the individual level, ethics of beneficence and respect for those individuals indicate that we need to do everything humanly possible that may be helpful.

At the same time, we need to use the other lens, the distance lens, which allows us to see the entire community. This is where the justice questions, the allocation and shepherding of resources, and the overall good that we seek to achieve together must be considered. While individuals must never be subsumed or "chewed up" in the attempt to promote public or common goods, we do have to consider that what is best for individuals may not be best, and may even be harmful, for the collective. We need to somehow look out of both lenses at the same time without getting dizzy. This is quite a challenge.

As you can see, with multiple values, it will be very difficult to find a single right answer that achieves everything that needs to be covered. Indeed, this is not a complete list of relevant ethical values.

We might, therefore, focus on ethics not so much as the outcome of the specific yes or no answer, but as a matter of process -- how we engage in our reasoning, what we take into account, whether we are acting in an accountable and virtuous way. Whether we do in fact care about the results or that our deliberations occur from a position of genuine compassion for our fellow human beings, recognizing that every choice will leave something undone. Some of these may not be as well protected as we need them to be and that may leave what is called "a moral residue."

Let me discuss a core principle, non-maleficence, which simply means, do not hurt people. This is the most binding, most minimal limit of ethical behaviour: Above all else, no matter what else you do, even if you do not actively try to help someone, for heaven's sake do not leave people less well-off than they were before. In a clinical context, this would refer to the physical safety of patients and their medical outcomes, their emotional well-being, and of those who are related to or care about them, and respect for their personal values and life situations. There may be things that individuals cannot or will not sacrifice for other goods. Those values may not be consistent among members of the health care team and the patients or families, or the policy bodies and the larger social orientation.

One of the most important problems that we see with Alberta's Bill 11 fits in here, under clinical best interests. By setting up what has been referred to as a "non-hospital hospital," the non-hospital, long-stay surgical centre, we create a real concern for the welfare of patients following surgery. Why would you need to stay overnight after surgery? It is not so that nurses can notice if you happen to go into crisis. It is so that someone who is prepared to help you with whatever sort of post-surgical complication might arise is there to do so. These non-hospital surgical centres would not have a full staff of clinical specialists in cardiovascular disease or neurological complications, or complications with respect to any other body part that might be injured. They would not be training medical residents. Who exactly is going to be on call at three o'clock in the morning when the highest-ranking surgeons in an area have gone home for the day? There are very serious concerns there.

Let me deal with the policy effort to protect and strengthen public goods rather than undermine them. If we talk about an approach dealing with the whole health system rather than a piecemeal one, again Bill 11 fails. What good is there in providing for surgery when the real crunch in the health care system involves recovery beds, not surgical centres? Again, we have to look at health promotion and protection, the areas of poverty relief, education, environment, all of those important things.

My next topic is justice, the fairness of allocation. There are several different forms of justice. The most important one for health care is social justice: relative poverty or wealth, access to opportunities, access to health care. Certainly, it is very clear that those of us who work in allied health professions know the right people. I can easily get in to see a specialist. I know the language, I can do the research, and I have connections I can call. Other people are not as lucky. That disparity in availability of access is a significant moral issue.

I would also call attention to what have been called the "natural lottery" and "social lottery." Whatever we may have worked hard in our lives to earn, we did not earn our parents or our genetic endowment. We did not earn the society in which we live, whether it is racist and discriminatory, or one that truly values equal access, equal justice, and non-discrimination. The fact is that, wherever we start from, which is utterly beyond our control, may greatly affect our health status and need for health care and may also set the ground for our ability to acquire resources to access that care later. That needs to be taken into account when primary goods are at stake, such as the ability to feel relief from suffering, to engage in education or employment, to take care of family members. It is not fair to limit access to health care based upon initial conditions that could not be controlled.

There are several different criteria of distribution. Need, equal access, and, to some extent, first-come-first-served, are crucial to health care systems. These other options of merit, equal shares, or by lottery or random chance, may be helpful in other domains, but not in health care.

It has been observed that the need for health care is literally infinite. We are mortal creatures, and every time our lives are saved, the one guarantee is that we will return with another life-threatening complication. Further, as we take care of the big issues -- my life is not currently threatened -- we become aware of less compelling ones and seek treatment for them, too. This extends to medical cures for baldness or toenail fungus, among other things, while other, more serious health care needs may go unmet.

Informed consent is a foundation of health care, insofar as treatment administered to a patient without free, voluntary, informed consent is a form of assault. It is also foundational in health policy. If a team is elected without the informed population, then people do not know what they have agreed to. If a decision is made that is not part of the elected mandate, then again there has been no information and little or no opportunity for consent. This would be an important concern, in my view, about the process surrounding Bill 11 in Alberta, since three times now the public has said they do not wish increased privatization. Nevertheless, as of last night, the government has passed Bill 11, with closure actually used at all three levels -- at first, second and third reading -- to end debate prematurely.

Disclosure requires the utmost in honesty, first, in providing available information and admitting what we do not know. Special attention must be paid to risks. Again, in the Bill 11 context, the risks concerning NAFTA implications of increasing privatization and overnight stays in for-profit facilities are real.

We need to promote understanding through a genuine dialogue, giving equal consideration to all available evidence, rather than directing it in a certain way.

Next is voluntariness. Again, there are concerns with the process in Bill 11. The manipulation of wording leading us to the non-hospital hospital is an excellent example. The definitions are placed at the end of the bill rather than up front, as is typical, so that the actual definition of a private hospital escapes most people's attention unless they know already what they are looking for.

Let me talk about external coercion factors. Holding the Tory Party caucus to a party vote rather than a vote of conscience, or according to constituents' wishes, is in fact a form of coercion. Again, the rush to push the bill through despite protests seems to be a coercive factor as well.

Next is the coercive factors of a situation. In health care, we need to realize that the patient may be vulnerable, frightened, in pain, compromised by the illness. In politics, we need to understand the limitations of the communication between the public and the policy makers. Attention has not been paid to this except to use those constricting factors to the benefit of the policy agenda.

Since there is need for informed consent, and given the difficulties inherent in truly informed and free consent, we must have a trust relationship of the highest order in both the health care and policy relationships. This is due to the disparity in knowledge or power. There is a duty for the more powerful to not merely avoid trampling on the less powerful, but also to come to their aid, to protect the most vulnerable. We need to understand our motives and choices when we are in positions of power, and we must, therefore, avoid even the appearance of a conflict of interest, let alone an actual one. Violations of this trust will threaten not only the individuals who might be affected, but will also threaten to undermine the entire institution of either health care or the democratic political process.

I have for you a document taken from the New Democratic Party of Alberta Web site, and the address is on the copy. This outlines the shareholders of the Health Resources Group, which is now based at the old Grace Hospital in Calgary.

Jim Saunders is the former chief operating officer of the Calgary Regional Health Authority. The RHAs are supposed to be at arm's-length from the government in power. However, other Calgary Health Authority members include Jack Davis, a former secretary to the provincial cabinet, and Jim Dinning, the former treasurer. There are several members who are involved in a variety of health care investment firms that have all paid into supporting the Health Resources Group. This is clearly the motivation for Bill 11.

The initial representation was that Bill 11 would reduce the waiting list for hip replacements. On the grounds of danger to patients, the college of physicians and surgeons said that would not be acceptable.

A second attempt was made to justify overnight-stay surgery with appendectomies, which are not elective but emergency procedures. You would need a full emergency room and staff for non-appendicitis cases of abdominal pain.

Now they have hit upon hernias, as is done at the Shouldice Hospital in Ontario. Again, HRG is an orthopedic centre. It looks as if this is a bill looking for a procedure to justify it rather than a clear response to the needs of the health care system.

I will stop there. There is much more to be said, both about ethics in policy and in health care provision, and about Bill 11, but I am open to questions.

The Chairman: Before turning to Senator Keon, I would like to make several observations, initially to Professor Shanner, about her comments on Bill 11. I do not want to be taken as a supporter of Bill 11, but I have great difficulty with some of your conclusions.

You seem to feel that it is unethical for governments to proceed with legislation to which the public is very opposed.

On that basis, this country would never have abolished capital punishment in 1975. I regard that legislation as one of the more positive things that I have been involved in in my life. Every poll repeatedly showed that 80 per cent of the public was adamantly in favour of capital punishment. In fact, I have difficulty with the premise that it is an ethical issue -- because it clearly is not -- for governments to do things to which there is massive public opposition.

It seems to me the point of government is to lead. It is very clear that you do not like the way it is leading, but that is a value judgment that is difficult to elevate to the level of ethics.

Dr. Shanner: May I respond?

The Chairman: Certainly.

Dr. Shanner: I certainly would not agree with the blanket statement that governments should never act in ways that are contrary to public opinion. The way governments should and must act, however, is first with careful collection and evaluation of all available evidence -- for example, as this committee is undertaking.

In the case of Bill 11, there is very great evidence from New Zealand, Australia, and Great Britain about the effects of increased privatization in an otherwise public system. Further, there is evidence about Alberta's own practice of mixing public and private care regarding ocular surgery for cataract replacements.

When this information was raised in debate, it was summarily dismissed. Indeed, most of the researchers who have presented such information have actually been called such unsavoury names as "whiners, complainers, and left-wing nuts."

The Chairman: That is minor compared to what members of this committee have been called. It is hard for us to be sympathetic.

Dr. Shanner: There is always going to be disagreement about values. There will always be disagreement over how to set the priorities. There will always be times in which all of us will tend to act out of what we are used to and comfortable with, rather than going back to the beginning and thinking it all the way through.

In the example of capital punishment, for instance, the moral argument supporting the death penalty is really rather dodgy. Does the death penalty deter crime? The answer, through evidence, is clearly no. Is the death penalty cheaper than incarceration? The evidence indicates no, it is not. Is there any good reason to commit capital punishment, short of seeking vengeance out of the anger of those in the community who have been hurt? Since that is the only reason to go forward, and the reasons against continuing the death penalty are significant, the best answer is to end the death penalty and lead the public into revising its opinion based on a better discussion of what is known.

The problem with Bill 11 is that there is quite a lot of information. It is being discussed by a large percentage of the population, but not effectively at the policy-making level.

Further, what is the justification for Bill 11? There does not seem to be much. The main benefit will be to regulate contracts with private facilities. This speaks only to surgeries. It does not speak to private diagnostic facilities, private clinical facilities, physiotherapy centres. There are all kinds of private facilities. This bill does nothing to address that very legitimate concern. In fact, what it does primarily is open up overnight stays at for-profit private centres, which the government's own blue-ribbon panel last year identified as "hospitals." A non-hospital hospital remains a hospital.

Third is the concern about the use of coercive forces and manipulative language. If this is worth doing, let's talk about why. Simply to use slogans or name calling or to refuse to discuss the other side of the question is simply not an appropriate approach.

Those are my concerns.

The Chairman: On that basis, you would disagree with the vast majority of major legislative approaches by governments of all parties, federally and provincially, if you think that the use of slogans, party whips, and a variety of other things are not appropriate mechanisms for changing public policy. I am not even sure I disagree with you on that. I merely observe that much of what you have said would apply to a whole variety of things done by all parties across the country.

Let me make one other, general comment. I would like to move away from Bill 11 for a minute.

There is an implicit position, and perhaps in the case of Professor Somerville it was explicit, that in many of these questions there is a "right" answer.

Dr. Somerville: No.

Dr. Shanner: There are better answers and there are some that are clearly inappropriate.

The Chairman: "Better" is a value judgment. If I give you five answers, you can tell me that one is better than the other. In many of these issues, there is a judgment at the end and it is difficult to classify it as better or worse, since better, inevitably, has to be based on the decision-maker's personal values. I do not know how you avoid that problem.

Dr. Somerville: I would like to comment on the previous issue that you raised. It is true that you cannot establish ethics by consensus. If you could, the Nazis would be ethical. That is an easy example.

It is also true, and something that we have realized very much more of late, that it makes a vast difference whether we start our analysis of an issue with the law and then consider ethics, as we usually do today, as compared with starting from ethics and then considering law.

The Chairman: I will agree with that.

Dr. Somerville: If I may say so, one of the differences between your position and Professor Shanner's is that she is starting with ethics and then saying, "Having established the ethics, what law should we implement?" She finds Bill 11 unsatisfactory because of her ethical reservations. You say, "Let's use the legal process and see what happens."

Another point I meant to raise in my presentation is that we are very concerned about the ethics of interfering with medicare. I think that is the right approach. On the other hand, we have to be equally concerned about the ethics of denying access to private health care. That does not mean we should make a decision to do that. What it means, and this relates to your question, is that in doing that, we cannot just ethically say that is what we choose, and like it or not, we are going to have it. We have to be able to ethically justify that inhibition/prohibition on private health care. I am not sure that we will be able to do that in the future.

It will be a very complex debate, particularly since the governing ethics will be different at different levels.

To respond to your question about whether ethics is just what I prefer. No, the whole point about ethics is that it is not just what I prefer. It is a structured, analytical approach to a conflict. There are different values and different positions. You may well come out with totally different answers to the same question, depending on the ethical structure that you use for your analysis. However, you must be able to justify your choice. It is the justification of that choice that makes up the ethics.

Almost all of these questions are value judgments, which is why we have a conflict. If we all come to the same answer, we get what we call the "white light of ethical insight," but that does not happen.

Senator Keon: You began to answer the question I was going to raise. Moving again to Bill 11, the big issue facing us all right now is the ethics of holding a population hostage to a single-tier system.

Let me give you an example. I am frequently called by people who need a certain procedure that they have been told they cannot have in Canada under general anaesthesia. They want to know where to go in America.

Is it ethical for us to have decided that some apprehensive person cannot have anaesthetic?

Dr. Somerville: The dean at one university wrote to me wanting a copy of a book entitled Canadian Health Care Policy. One thing he said in his letter that gave me a shock in the realization of it, was that Canada really does have a private health care system, only it is in the United States, unlike Australia, where it is too far to go to access another system.

I think you are making a very important point. I certainly cannot answer whether it is ethical or not. I could, at some point, try to do an analysis of whether it is ethical to continue to do that.

That is exactly the point I was raising. We cannot simply assume that it is ethical to do that. We have to be able to justify that it is ethical. I do not know whether we are going to be able to do that. It is the issues that Professor Shanner raised.

If your primary value is equality of health care for the Canadian population, you may feel that we should provide for all basic needs and not go beyond that. You could possibly justify it. On the other hand, there is this joke going around in Ontario about a man who booked himself into a veterinary clinic with the last name of Fido because then he got a CT scan the next day, whereas he could not get it in the hospital for several months.

If you can spend your money on your dog, why should you not be able to spend it on yourself, if that is what you want to do? The reasons are societal. There are value reasons. There are social cohesion reasons, and there are community-forming reasons. That is why we have such an incredibly difficult job in doing this.

Dr. Shanner: If I could add, there is a real tension between this level, which is the policy for the community, and the health care providers level, which is at the bedside with individuals. Health care providers are committed to doing the best for the patient, and their job is to move mountains to get that procedure. When it is not available, the clinician is unable to do what is needed, and may be thereby constrained from meeting personal ethical requirements. There is a very difficult level issue already, in that whatever you decide, you must not undermine the ethical commitment of the care providers themselves.

The other piece of this is that allocation decisions are not appropriately made at the bedside; it must be here. By the time an individual says, "I need a procedure but I cannot get it. What will you do for me?", the problem, and the ethical failing, has already occurred.

We need to step back several levels. There are larger questions, and again I do not have answers for them. We need a very serious, community-wide conversation about what are the goals of health care? This affects everything, including how research monies are invested and what kinds of health care problems and technologies we will pursue. Do we expect significant benefit, say, to justify the enormous amounts that we are investing in genetics research? How do we deal with questions about repeated treatments, people with chronic conditions who come back again and again, and who end up using vastly more health care resources than people who are generally healthy but experience the occasional crisis situation?

We have questions about age. How do we deal with neo-natal intensive care? How do we deal with the increasing age of the population demographically? Are we going to institute an age limit beyond which we will not provide care and you are on your own, or do we say it is for all ages? There are limits that need to be imposed. It is not an age question, it is something else. However, what is that something else?

We need your leadership to help answer those questions in the community. Help us with that conversation. When we have to say no, to whom do we say no, and what is the justification? We cannot do everything for everyone.

Dr. Somerville: It is a very real and current problem, as we see if we look at the Supreme Court of Canada's major judgment on informed consent in a case called Reibl v. Hughes. There is another one, Lepp v. Hopp. Under that, the physician has to tell the patient all the information that would be material to a reasonable person in the same circumstances.

One of the things that is material to patients is knowing the possible range of treatments for what is wrong.Usually the patient questions what is best and what is worse. Physicians, at the moment, are restricted by health care budgets in the hospitals. Sometimes, what would be the best thing to do is not even available.

What does that physician do? A lot of physicians are fudging it and do not say much about it. Legally, quite apart from ethically, that physician is not obtaining informed consent when he or she does that.

I gave a lecture based on this paper the other day, and I had people from the hospitals falling under the table saying, "You mean you want us to tell patients about treatments that would be good for them, but that we cannot give them here?" I said that it was their legal obligation to do so. It is also their ethical obligation. One of these doctors said that it was already tough enough practising medicine, it would be impossible if they had to do that. In fact, that is what they should be doing, and some doctors are. It is very, very difficult.

The Chairman: Senator Carstairs has had an example of that in her family life.

Senator Carstairs: Quite frankly, the doctor was very ethical and said these are the options -- radiation, surgery, and therapy. He said that he could not administer therapy in this country for prostate cancer, since it was not available. He outlined all three. When I asked him what would he do if he were in that situation, he said he would have the special therapy. We went to the United States and had that therapy.

Dr. Somerville: I am sitting on the health technology assessment group at Health Canada. We had a meeting last week. There is a new technology out that Dr. Keon will know about. It is an implant device, and theoretically, it could save the life of anybody who has had any kind of heart trouble. One estimate of the cost of giving it to all Canadians who could benefit from it is that it would use between 4 and 5 per cent of our total health care budget -- one small technology.

We are dealing with the issues we see on the front pages of our newspapers. These are just the tip of an enormous iceberg.

Dr. Shanner: I will mention one last item to call attention again to issues that Dr. Millar mentioned earlier. All acute care services, everything done in hospitals and most of what is done in doctors' offices, account for about 15 per cent of our health status. If we want to be healthy Canadians, and if we seriously want to reduce how much we spend on our health budget, we will have to work in areas outside that budget. We need to focus on poverty relief, education, cleaning up the environment, and that long list of other social goods that create the conditions in which we experience health or illness.

There is another aspect to this. We should, perhaps, not focus on the patients, for whom wonderful intervention might be available, but we could only provide a few without bankrupting the country. Instead, we should step back and consider not just what is most effective in health care, but also how to keep people out of the acute care system in the first place, while maintaining a robust health care system for crisis situations that were not preventable.

Dr. Somerville: The only thing you can say about that is that maybe we have the wrong terminology when we say "health care," because that focuses on what we are doing about health. Actually, we are talking about illness care. It is, as Susan Sontag says "the kingdom of the well and the kingdom of the sick." We are dealing with how to treat the people in the kingdom of the sick. We get into a mess when we start to bring all these other things into it.

Senator Fairbairn: We could continue for hours on this topic. As I listened to you use key words such as value judgment and trust, another element struck me -- how to define ethics or offer ethical protection? There is also the ability of the people to understand the layers in the definition as well. This encompasses all of the additional issues such as poverty and lack of opportunity. However, with all the ethics, best practices, and goodwill that we can come up with, we are also looking at a great number of people who will not understand it, except perhaps in the most fundamental way. This is leading to the issue of wellness and illness.

Also, in consideration of what we have gone through and will continue to go through, there is another important issue. At the heart of a lot of the concern, which has come, certainly, in the form of organized demonstrations -- people just coming out to express themselves -- is there not a question of fear?

Dr. Shanner: Yes.

Senator Fairbairn: It really may be a lack of understanding, knowledge, and ability. There are many people who can use the Internet, as I have myself, and find a vast array of suggested new developments, but there are just as many people, not just in this country but in this world, who have no access to that part of the debate.

Those are my thoughts. The one that always comes through, when it comes to health, is the primal feeling of anxiety and fear, because there is nothing more personal.

Dr. Shanner: I think that you have two really wonderful, rich questions blended together. On the first, about who can understand all of this, there are two things to consider. One encompasses the areas of knowledge -- economics, politics, and the outcomes data. Very few people understand much of any of this at all, let alone the whole picture. The second part of this we might call "wisdom," which has nothing to do with knowledge or power. This is what you learned at grandma's knee about what is important in life. There is quite a lot of wisdom among those who are not in positions of power, knowledge, or authority. I think that your insight about the fear that arises when health is on the table is both instinctive and entirely reasonable. When your health is at stake, nothing else matters. Everyone pretty much recognizes that.

When we are reasonably healthy, we get distracted and we take our good health for granted. We worry about other things, such as paying bills and advancing in our jobs. It all comes to a screeching stop when we get sick, and suddenly it is very clear just what is important here.

I want to emphasize not only that recognition of the value of health and health care, but also a lot of the core ethical values. I am giving you some technical words here, but they really come down to: Do not pick on people, do not hurt them, do not kill them; and treat other people as you yourself would like to be treated. When you and your little brother shared the piece of cake, you divided it fairly. Help people. There is an understanding of integrity and honesty. If we did not learn this as young children, then I would have nothing to teach. I can only give it a name and call attention to the inate wisdom, or the wisdom learned very early, about what it means to live a good life and be a good person.

Those who have utterly no interest in philosophy may have an interest in religion. It is the same concept and is another explanatory system. It is a search for the good and how to make it manifest in our lives. People understand this, although they are very easily distracted.

The other piece, the public fear, again gets back to the process. We are completely vulnerable when we are ill because of fears related to disability or the loss of life. As citizens, we are, in a way, vulnerable to our policy leaders. When the policy leaders are not listening, not taking seriously how anyone else perceives this or experiences that, and decline to discuss the issues relevant to health care providers, then we have a situation where the lack of trust and powerlessness is much greater than in health care itself. I believe that it was the powerlessness and the undemocratic process that were being protested in respect of Bill 11. It is not just about health care in Alberta any more, it is also about whether the government is responsive to the people, and to those who are sworn and committed to help them.

Those are two different issues that are separable but very closely connected. We have seen the connection and the evolution in Alberta very clearly.

Dr. Somerville: I think one of the things that we have to do is look at the changes that have taken place in our society and how those changes are altering the context in which we deliver health care.

For instance, it is often said that our society is based on intense individualism. That means, for example, that with all the talk about rights to personal autonomy and self-determination, the individual's claims are given priority over the claims of the community. If we looked back to when we founded medicare, we might find that there was quite a different balance between community and individualism. We need to look at who the people are. We have seen an incredible increase, in the last 12 months, of cases in our Canadian courts where people have sued somebody to obtain health care. This has happened only recently in the United States as well. We have to ask why that is happening. I think one of the reasons is the baby boomers. They are well educated and articulate, feel that they have rights, and are used to getting what they think they need. There are all sorts of things that we have to look at to see why the situation is different now from what it was when we started medicare, and how that can be accommodated.

The Chairman: Thank you both.

The committee adjourned.