Proceedings of the Subcommittee to
Update "Of Life and Death"

Issue 8 - Evidence

The Subcommittee to Update "Of Life and Death" of the Standing Senate Committee on Social Affairs, Science and Technology met this day at 9:15 a.m. to examine the developments since the tabling in June 1995 of the final report of the Special Senate Committee on Euthanasia and Assisted Suicide, entitled "Of Life and Death."

Senator Sharon Carstairs (Chairman) in the Chair.

[English]

The Chairman: Honourable senators, today is our eighth day of hearings under our mandate to update the unanimous recommendations contained in the 1995 report of the Special Senate Committee on Euthanasia and Assisted Suicide, entitled "Of Life and Death".

I would remind honourable senators and witnesses that this committee is not reopening the debate on euthanasia and assisted suicide. It is dealing strictly with the areas of the report where the original committee made unanimous recommendations. I would ask that everyone bear this in mind.

We have two panels today. On our first panel we have one guest, Dr. Neil MacDonald from the Centre for Bioethics, Clinical Research Institute of Montreal. As a reminder to both Senator Roche and Senator Beaudoin, I will point out that Dr. MacDonald presented to our first committee. The focus of his testimony at that time concerned the training of physicians. Specifically, we have invited him back today to talk about the training of physicians in pain management and palliative control. Dr. MacDonald, you are most welcome once again.

Dr. Neil MacDonald, Centre for Bioethics, Clinical Research Institute of Montreal: I am pleased to meet with you once again, five years after I first appeared before the committee on euthanasia and physician-assisted suicide. I am a palliative care physician. I also work in a bioethics program, and I am a former cancer centre administrator. I used to be the director of the provincial cancer program and the Cross Cancer Institute in Edmonton, Alberta, some years ago.

Since we are talking about education, I will limit my comments to education in palliative care. We could talk about the general education of professionals, the specific education of people training in palliative care and, very importantly, the education of patients, families, and the community in palliative care. I will limit my comments to the training of medical students and residents in medical schools, but I would be pleased to comment or answer any questions on other areas of palliative care education, if time allows.

Approximately five years ago, I presented information in which I pointed out that the training of doctors in palliative medicine was clearly unsatisfactory. Five years and five months later I am back, and I would like to be able to tell you that the situation has changed positively and dramatically, but it has not. It still remains, by and large, unsatisfactory, although there are a few areas where it is clear that there has been some improvement.

Not only to offer you rhetoric, but also to give you a bit of evidence on the statement I make, is the slide on end-of-life care. This is a review of 50 major medical textbooks that are studied by our residents and students. The people doing the study reviewed the chapters on common causes of death. They found, as you will note, that in more than half of them there was no information that was at all helpful to people reading these textbooks on dying from cancer, dying from congestive heart failure, and so on. It was as if, in the medical textbooks, people do not die.

You will also note that in both the worst and the best textbooks, geriatrics and family practice were rated slightly higher, but the worst textbooks were those on cancer and AIDS, two causes of chronic illness and death where suffering is manifest.

About the same time -- that is, 1999 or late 1998 -- there was an interesting study of the people who run the clerkships in internal medicine in our hospitals through, primarily, American experience. In this study, they were asked what were the important, core topics that had to be taught to the residents and the students. End of life did not appear on the radar screen at all. At the top were the important but conventional things that we teach, such as hypertension, management of coronary artery disease, and management of chronic pulmonary disease. Cancer pain was not included, and neither was a specific emphasis on end of life.

That intrigued me and a number of my colleagues. You may recall that I gave you some data previously from the Canadian Palliative Care Education Group, which has representatives in each of our schools to observe the hours of teaching in palliative care. We have maintained regular surveys, and in 1999 we started asking for the medical students' opinions on their experiences and the calibre of our teaching in palliative care.

I am showing now a graph of survey results from the University of Alberta and from McGill. Both these schools are, by the nature of their research programs and teaching hours, arguably at the top of our Canadian medical schools in palliative care teaching.

Our students were asked, at the end of the day, for their thoughts on teaching in hypertension and breast cancer. We postulated that the results would be extremely good. We assigned a "1" as very good and a "4" as very bad. Their overall experience, as expressed here, was good. Looking at the palliative care experiences, though, the students did not think the teaching was nearly as good.

Regarding management of cancer pain, only 3 of the combined group of 110 students -- representing about 50 per cent of the overall class -- thought that their overall experience and the teaching were excellent. Two thought the experience was very good, but the majority, 49 plus 7, thought the experience was either not very good or, indeed, very poor.

Contrast that with the teaching in hypertension, which brought an entirely different result. The majority of these students thought their experience was either excellent or very good.

We have a paradox here. Any time you stand up in medical school to teach, you get a rating. I know that the ratings at McGill for lecture and small group presentations are excellent. I have worked at the University of Alberta and I know the ratings there are excellent. The students listen to us lecture and they say that the teaching is very good, but, at the end of four years, they say that the overall experience is unsatisfactory.

This paradox goes back to my earlier statement about what happens on the wards. Research tells us that students and residents learn primarily from clinical experience with patients, as directed by role models on the wards. We do not have role models on our wards to teach proper end-of-life care. We can lecture, but it is to relatively modest effect without those role models who are, on a day-to-day basis, demonstrating excellence in care to our students.

Factors limiting pain control were the subject of a recent study amongst oncologists and palliative care doctors in the Province of Quebec. On the scale used for this study, "1" is excellent and "5" is poor. In the opinions of these physicians, the big problem in managing cancer pain does not lie with access to drugs, but with physician reluctance to use opioids and patient misunderstanding about the use of pain medication. The problem also lies with education. They say that our problem in Canada is not access to proper therapy for pain management, but rather teaching it and applying it well.

I have listed for you the common educational aims to which, if you were to ask 16 Canadian deans, they would likely all subscribe. The list is extracted from a review of the literature in medical school education. We want to teach in the home and community; to shift from the institution and to teach whole-person care. We must learn to work in teams, because that is the way modern medical care is conducted. We must improve communication skills and, of course, we want to think of medical issues in ethical terms. These are common aims not just for palliative care, but for medical education in general.

How do we spend our time in medical schools? I have noted that in our hospitals, I often see our residents and interns or students wearing operating-room green. I thought in part that might be a fashion statement, but it is more than that. In our survey, we compared the time that our students spend in operating theatres with the actual time they spend in the community or in interdisciplinary teaching situations. An exceptional discrepancy was found.

We asked the students whether they wanted more palliative care teaching and 85 per cent said yes. They were at some pains to tell us that they did not want us to take them out of the operating theatres necessarily, but in both these schools, they were able suggest some selected areas where time could be assigned for clinical palliative care teaching.

It is a common complaint in medical schools that there is so much new information and no room in the curriculum. This information suggests room can be found by moving priorities around. Palliative medicine is not a special-interest group. The teaching of palliative medicine provides an excellent laboratory, if you wish, for the general principles of medical education that people espouse.

Some things have improved. Five years ago, I said our group was updating the Canadian palliative medicine curriculum, which we did. We published that in a book called Palliative Medicine containing contributions from representatives of 12 of our 16 medical schools. We arranged, through a pharmaceutical company grant, to give copies of this book, which is printed by Oxford Press at cost, to the graduating class of each of our Canadian medical schools in one year. A second year is now under way, and the book is in the process of being translated into French. It will be distributed to our francophone schools in the next academic year.

This is an excellent example of people working together. I am very proud to note that this book is sold commercially around the world and has been a success. We have been asked by Oxford Press to produce a second edition because of its sales. I am proud to report that the people who wrote for this textbook have donated all of their royalties to a Canadian palliative care education fund.

Our next slides show something important that comes, in part, from the initiatives of a number of doctors, including an Ottawa doctor, Dr. John Seely, former dean at the University of Ottawa. These doctors have been contacting the LCME, or the Liaison Committee for Medical Education, which is the group that reviews our medical schools in Canada and the United States, to try to increase that agency's expectations. This year, they have included for first time this statement: "Clinical education must include experience in palliative care management and end-of-life care." The rhetoric is in place, and now we must see how we will proceed.

There is an interesting report published by the Institute of Medicine of the United States Academy of Sciences. If the senators do not have a copy, I strongly recommend you obtain one. I can tell you how to get it from the institute of medicine. This is a review of the status of palliative and end-of-life care in the United States, printed two years ago, and entitled, "Approaching Death." The report uniformly concludes that care was clearly inadequate. It contains a number of first-rate recommendations that I will address later. It is an excellent summary document on palliative care and end of life in the United States.

This is my question: Are we looking at inequalities in education, or inequities? An inequality is something we cannot address; it is an empirical difference. I am older than most of the people sitting behind me, and although I would like to be younger, I cannot be. That is an inequality and I cannot do anything about it. An inequity, though, is a difference that is unfair or unjust, the dimensions of which can be changed. I regard the level of interest in palliative care education and palliative care research in our medical schools as an inequity, because it is possible to recognize the differences and do something about them. It takes willpower and a setting of priorities.

How do we do that? I call your attention to a very interesting book by a sociologist named Everett Rogers. He talks about how ideas are diffused through society, how they gain acceptance, how you can have something promising like a better keyboard for computers that never gains acceptance, and how you can teach people in a variety of ways to accept an idea. This slide is a summary of his ideas, very briefly expressed. I call your attention to the orange arrow. Critically, he makes the point that you can come up with good ideas, but unless you can convince those in charge, the opinion leaders, the people who change the curricula, the people who set the exams, the people who audit process, then these good ideas will not be accepted, even with community pressure, senatorial pressure, and acceptance and completion of a set of information by palliative care people.

In five years, we have seen a great deal of information and good teaching material in palliative care, but I have given you some evidence that it has not been satisfactory.

In palliative medicine and end-of-life care, we have seen adaptation of new concepts and the development of a specific body of knowledge. Persuasion through role models is a critical factor that must be achieved. Decision-making by influential opinion leaders must occur. We then need implementation, ensuring that we have appropriate audit and examination content and assessment of what we are doing in end-of-life care. We are clearly still at points 1 and 2 on the adaptation of a new concept.

I would be remiss if I did not mention one other area of improvement, although I will not talk about this formally. We introduced for the first time, in July, a residency training program for palliative care that is sanctioned by the royal college. I understand that probably about eight of our sixteen schools will participate in the first year. We are not certain about the total number of residents, but it will probably range between 10 and 20. This is a start. However, this is a one-year fellowship. This will not train people in research or in education. We do not have support for that kind of critical faculty establishment grant that is needed in all of our Canadian schools.

I call your attention to a very positive movement that has major connotations for Canada, and that is that the United States, after lagging behind us, is getting its act together. This overhead shows core principles of end-of-life care that come from a document from the Milbank Foundation and the hard work of Kathy Foley and Christine Cassel in the United States. They established these core principles and distributed them to the leading medical associations in the United States. If we had these core principles in place, and were teaching them, we would be in pretty good shape in Canada.

This overhead shows a summary of all of the associations that Dr. Cassel and Dr. Foley, working with the heads, were able to bring together to endorse those core principles. Such a movement, to my knowledge, has not occurred in Canada, and it is very important that it does. We are seeing a massive increase in training opportunities and in research funding. The National Institutes of Health in the United States, for example, have put forward a specific request for research in palliative care and have offered support. That is good, because in medical education the borders are transparent. However, it is not so good, inasmuch as, if we remain inadequate, we will lose very good people to the United States. I call your attention to the fact that a very important individual in the University of Toronto program and the head of the program at the University of Alberta have recently moved to the United States. The opportunities there are now becoming manifest. If we do not follow along in both education and research, then we will become an educational colony in this area, and that is an unsatisfactory situation.

I would like to come back in five years and be able to say that we have moved from rhetoric to tangible activity. Tangible activity consists of such things as providing venues for bringing the medical societies together to endorse end-of-life care principles, and where we can ask our deans and our department heads and our medical schools what they intend to do about end-of-life care, how they intend to meet the challenge from the United States, and how they will produce the capacity to train people in education and research to forward the critical work that must be done in this area.

The Chairman: I was hoping that you would bring us better news than you were able to bring this morning, but I was aware that not as much progress has taken place in the last five years as we had hoped.

Senator Beaudoin: You focus on the educational aspect of palliative care, where not much progress has been made. What about the provinces? They have something to do with this as well. We have a certain responsibility in this field, but so do they. What do you suggest for them? It is a divided field.

Dr. MacDonald: This takes us outside of education specifically. A number of the provinces, and you will probably know more about this than I do, have specific initiatives in palliative care. They have introduced some interesting programs in Ontario, amongst others, to train physicians in the field -- to come back and obtain some palliative care training. They also have provided a more credible arrangement for funding for palliative care physicians, because it does not lend itself well to fee for service.Taking the time to analyze the difficult problems that patients and families have and to provide counselling and psychosocial input does not lend itself to a fee-for-service arrangement. It is not like a chest X-ray. There are some initiatives that vary from place to place.

Nevertheless, I want to concentrate on the medical schools, and I want to concentrate on the heads of our national societies. it is important for a community group, for our Senate, to take the lead in meet with the heads of our national groups, the people who are in charge of the overall educational process in our medical schools, and the people who run the medical councils of Canada. You could meet with the royal college and the college of family physicians to see whether they concur that there are inequities in the teaching in our medical schools, to see if they would buy into some core principles, and then to see what they can do to take matters forward. I think that is done at a national level within the schools and does not depend uniquely upon provincial health care input. They can help a great deal by setting up good situations in which palliative physicians can practise, and perhaps assist in continuing education. Medical schools interact on a national as well as a provincial level.

Senator Beaudoin: Do you think that we need to change the legislation here, or is that not the problem?

Dr. MacDonald: I do not pretend to be an expert on legislation. Any comments I made would be naive.

I am struck by one interesting point, though. I also have a major interest in research, and I have recently chaired the MRC's standing committee on ethics in human research. Our boards across the country are reviewing research. By definition of the tri-council guidelines for research, we must include people from the community. We cannot review and introduce research programs without community input. It struck me as ironic that we do not have a similar, clear-cut, established role for the community in looking at the education of our physicians and our other health professionals.

It strikes me that one suggestion worthy of discussion is whether, on our major medical school committees, our curriculum committees, et cetera, we should have mandated numbers of people from the community, just as we have mandated numbers of people from the community in research.

Senator Roche: We know that one of the stages in the process of death is initial denial, and it appears that the medical profession is almost in denial about the need for palliative care. That was the impression I got from you. Even though a great majority of the students want more education in palliative care, I am wondering, Dr. MacDonald, if you can give us your view. I am sure all the senators on this committee are very much in favour of palliative care and, consequently, education in the medical schools that will produce more knowledgeable physicians in this respect. However, what can we do if the medical profession itself does not give a higher priority to the training of physicians in palliative care? We can certainly, I suppose, indicate in our report that this should be done. Is it not a question of reaching into the minds of those who set the curriculum and those who are charged with developing physicians?

We are not charged with developing physicians, but the medical profession is. I am wondering about the effect of our admonition, so to speak. If we put such an admonition in our report, what effect will it have if the medical profession is still wanting to spend their resources and time on curing illness rather than dealing with the facts of death?

Dr. MacDonald: Yes. Again, I will try to indicate that I think you have a very strong moral role to play in Canadian society. The teaching of palliative medicine and end-of-life care is not just an educational but also an ethical issue. I think that you may have either the means or the moral authority to move some ideas forward, such as the one in the United States, to see if it is possible to create an authoritative leadership, with some foundation or government support, to draft end-of-life principles and then ask our major medical groups to buy into them. That is what they have done in the United States and it appears to be having a very major impact.

I do not believe that it is satisfactory to leave the process of education, so vital to the community at large, completely without community input. You must think of ways to facilitate real community input.

Senator Roche: I take your point that education is too important to be left entirely to the professionals.

Do I take it that you think the report that we are working on might be enhanced if it contained a section on end-of-life principles?

Dr. MacDonald: Yes, it would, but I call your attention to your last report. You did recommend that there be increased and better end-of-life training, and that just is not satisfactory. That is not sufficient. This report should be complemented by some proposals on how we can move from rhetoric to tangible improvement. Examples from the United States have demonstrated that they are making major progress by working with the opinion leaders, by working with the people who run the major medical associations, and by working with the people in the medical schools. They are making real strides.

Although I was invited to talk about education, I will point out to you two major changes that have occurred in palliative and end-of-life care in the last five years because they are germane to education, in my opinion. The first is, we are not just talking about cancer. The vast majority of patients in current programs have cancer, but a support study in the United States has clearly shown that the levels of suffering when dying of chronic obstructive pulmonary disease, AIDS, advanced renal disease, or advanced coronary artery disease, are equivalent to those of cancer patients. The principles should apply broadly through the whole area of chronic illness.

The second important change is that palliative care has currently pretty well been relegated to the very last days of life. This is not sensible or logical, because if you are suffering from, for example, cancer of the pancreas, you did not just develop pain or weight loss in the last month. That pain, weight loss and psychosocial distress, occurred at the time of diagnosis. We are trying to ensure that the principles of palliative care infuse the whole course of a chronic illness and that we get away from this illogical and artificial division, where you are ostensibly being "actively treated" for cancer with chemotherapy that may or may not prolong your life, and then it is time for palliative care. The time for palliative care, logically, is at the onset of the diagnosis of a chronic illness that, predictably, will end your life.

Senator Roche: Finally, I am interested in the set of end-of-life principles, which you reviewed rather quickly.

Dr. MacDonald: I will leave them with you.

The Chairman: I have them, senator.

Dr. MacDonald: I would strongly advise obtaining a copy of the document entitled "Approaching Death", because it is a masterful, thoughtful account of end-of-life care in the United States, much of which is germane to our situation. It has chapters on research and education, and on economic issues in palliative care. It is a very good document. I will either arrange for you to receive a copy or describe how you can do so, and I would be pleased to leave the Milbank report for your perusal.

I would also be pleased to leave you a copy of Palliative Medicine. We are rather proud of this book. It is going into its second edition now and we will continue trying to use this as a vehicle to influence teaching in our medical schools.

The Chairman: We know that this week, probably tomorrow, in fact, the Senate will receive Bill C-13 -- and I am sure Dr. Friesen will prick up his ears from the back of the room -- which is concerned with the Canadian Institutes for Health Research. There will be a number of institutes established to conduct research. Do you think it would push the palliative medicine agenda forward if there were to be one on palliative care?

Dr. MacDonald: Dr. Friesen and I go back a long way. We were both residents together at the Royal Victoria Hospital and I have discussed this issue with him fairly recently. I feel strongly about one specific idea, and that is that frailty through the course of an advanced, chronic illness is a universal problem. There are steps being taken to improve the lot of frail people, many being psychosocial, and in improved nursing care, home care. I have been discussing with Dr. Friesen the possibility of a biological research initiative to look into the specific causes of muscle weakness and frailty, and whether at this point in our knowledge we might be able to bring forward some interesting research, ideas, and interventions. I think we can.

Dr. Friesen has very helpfully provided me with some suggestions on how this might be achieved through CIHR, and I will try to follow through on those.

The difference is that the United States has published what they call "RFAs". Their National Institutes of Health said, "Here is an area of research where we are not doing very much", and they added financial enticements. I will continue my discussions with Dr. Friesen on whether some type of RFA in an area such as loss of function and frailty would be a reasonable idea in Canada. I think it would.

This discussion does bring up the important issue of getting started. According to the 1996 survey, if you add up the total number of doctors who are supported by their medical school in palliative care in this country, it is under 18. There are biochemistry departments in separate medical schools that have 18 people. We do not have that investment in capacity.

We need to provide grants that would attract some of our best and brightest and enable them to train in some of our first-rate research centres, of which we have very few in Canada. The University of Alberta certainly stands out, as do the Universities of Ottawa, Laval, and McGill, among others. Alternatively, we could send them to train with colleagues in the United States and then attract them back.

We need to build capacity and to establish upfront financial incentives for that. Otherwise, we can always say we should be doing this and that, but there is nobody to do it.

The Chairman: Can I just get a clarification on that? Did you say that there are 18 doctors in medical schools across the country with expertise in palliative care?

Dr. MacDonald: No, there is a far greater number with expertise. The number I am referring to is from our survey of 1996 when we asked how many people were supported by the medical school in their palliative care activities. That refers to people involved in research and education as well as clinical care. The total added up to just under 18.

There are some medical schools where the investment is very substantial. The University of Alberta is one. The investment at the University of Ottawa is very good, but there were a number of schools in 1996 where respondents to the survey could not identify any individual who was receiving medical school support. There are many doctors in the community. However, I am speaking about capacity, about the people in the medical school who write those textbooks and articles and who do the research and set up the teaching models. That is the group that we are lacking.

The Chairman: Honourable senators, there are four witnesses joining us for the next panel, Dr. Henry Friesen, Dr. James Young, Professor Brian Mishara, and Mr. Russel Ogden.

Professor Brian Mishara, Department of Psychology, Université du Québec à Montréal: I thank honourable senators for the opportunity to appear before this committee to update the report of the Special Senate Committee on Euthanasia and Assisted Suicide, which was released in 1995.

I was impressed by the Senate committee report. It is an elegant document in which the committee's recommendations are clearly presented and well justified by a sophisticated understanding of many of the complex issues involved.

I will make a few brief remarks based upon my experience as the director of the centre for research and intervention on suicide and euthanasia at the Université du Québec at Montréal, and on some of my experiences in investigating human rights issues and euthanasia when I held the Bora Laskin National Fellowship on Human Rights Research, as well as my involvement in several research studies. I will restrict my remarks to results of studies since the report was published in 1995.

Suicide is not illegal in Canada. However, we do not encourage or facilitate suicidal behaviour and section 241 of the Criminal Code makes it illegal to do so. We control access to means of suicide with firearms legislation and barriers on bridges.

When someone is suicidal, or has attempted suicide, we usually do everything possible to avert a lethal outcome. We have suicide prevention programs and we offer the best medical care possible following a suicide attempt. We do so because of the belief, based on years of practical experience and research results, that although people consider suicide because of a situation that they perceive as intolerable and interminable, they are usually mistaken. Despite their belief that their desperation will last for ever, we know that the situation can generally be improved significantly.

Thus, despite the adolescent or middle-aged man's belief that life cannot go on after a girlfriend or spouse terminates a relationship, we know that the anguish need not and will not last for ever.

Similarly, when a clinically depressed person is feeling that life is hopeless, we know that depression may be treated and the feeling of hopelessness can disappear. Experience has shown that suicidal intentions, no matter how rational they may seem to a person, generally reflect reactions to transient, highly emotional situations and that the perception of the hopelessness of the situation usually changes if appropriate help is given.

Many people feel that the desire by people who are terminally or chronically ill to hasten death is different from the suicidal intentions of healthier individuals. Justifications for condoning or facilitating actions to shorten life in these "special populations" by suicide, euthanasia, assisted suicide, or by refusing or discontinuing treatment are based upon the premise that the suffering or anguish they experience is truly intractable.

If we do condone the hastening of death by these means, we assume that the desire to end life prematurely is determined by the inevitable course of the illness, and that the person's reasons for choosing a premature death are a direct consequence of an irreversible disease process.

It is therefore of crucial importance in any deliberation concerning death and life decisions with persons who are terminally ill, or who suffer chronic degenerative diseases, to consider whether the reasons for hastening death are truly related to irreversible consequences of the illness, or if other factors, such as inadequate pain control or untreated clinical depression, are responsible for the person's desire to end life prematurely.

I have provided members of the committee with an issue of the journal Omega -- Journal of Death and Dying from 1999, in which I published a synthesis of research and evidence on factors affecting the desire of terminally or chronically ill persons to hasten death. The goal of that article was to understand why some people shorten their lives by suicide, euthanasia, assisted suicide, and refusing and discontinuing treatment, while others choose to continue to live despite a terminal or serious chronic illness. I believe that the results of that analysis may have important policy implications.

Before considering the results of that investigation, I believe it is important to consider several issues that complicate any attempts at legislation in this area.

First, any legislation concerning euthanasia, assisted suicide, or stopping or withholding treatment generally limits access to these means to persons who are considered terminally ill. There have been a number of recent research studies that indicate that for many diseases, cardiovascular disease being an example, it is extremely difficult, if not impossible, to determine whether a person is terminally ill and to make accurate estimates of chances of survival and the timing of death. Although for some diseases, such as certain forms of cancer, survival estimates may be more precise, we are not currently able to accurately determine the probability of survival and reliably categorize people as terminally ill.

Second, one must make an important distinction between decisions concerning life and death that occur in the hours and days before a person would die a natural death, and decisions made earlier. In the Netherlands, euthanasia is practised most frequently when the person is expected to live only several more hours or days.

Furthermore, decisions concerning life and death at this stage are complicated by the fact that the majority of patients who are so close to death have their competence to make meaningful decisions significantly impaired. Lynn and colleagues did a prospective study that was reported in 1996. They followed patients over a long period of time and determined who actually died. They started with 9,105 terminally ill patients. They learned that of those who had a poor prognosis, that is, a 20 to 29 per cent chance of surviving for six months, over half were so impaired that they had problems responding to any verbal stimulus or with moving their eyes or bodies purposefully, and 59 per cent were too sick to engage in meaningful conversation.

Therefore, meaningful, informed consent is often impossible at this stage in the development of a life-threatening illness. The frequent occurrence of cognitive impairment near the end of life may seem less important if advance directives are available that indicate the individual's previous desires. However, some recent research suggests that what people think they will want at a future time, or when their situation changes in a certain way, is not consistently related to what they eventually do want when they are in that situation.

For example, I am just completing a longitudinal investigation where we followed 101 persons with advanced AIDS. We evaluated plans and intentions to foreshorten life by suicide, euthanasia, and assisted suicide. We followed people, and several have died.

We find very little consistency in follow-up data at six-month intervals concerning the extent of the intention of these people to end their lives prematurely. As one example, an individual clearly complained that he had no desire to continue living if he were ever bedridden or a burden to others. He said that he had the means available to take his life, and a willing assistant. When this person found himself in a situation much worse than he ever imagined -- he was bedridden, blind, and dependent upon medical apparatus to survive -- he did everything possible to live another few minutes, hours, or days despite constant suggestions by his companion that perhaps the time to die by assisted suicide had arrived.

In another instance, a person who vehemently expressed the view that only God can end life and one must go on regardless, was pleading for someone to end his life immediately during the last two days of agony before his death.

Most people in Canada believe that individuals with chronic degenerative diseases such as senile dementia, multiple sclerosis, and many forms of severe handicaps, would have a strong desire to hasten death. However, research studies clearly indicate that these diseases, as well as several other disabilities, are not linked to an increased desire for suicide, euthanasia, and assisted suicide. Research shows that the extent to which people with chronic diseases desire to end their lives prematurely varies according to the disease and the stage and progress of the illness. For example, persons with AIDS have the highest risk of ending their lives by suicide in the months after they first learn that they are HIV positive, even before they have experienced any symptoms.

Furthermore, the principal reasons people with terminal illness choose to end their lives prematurely depend upon the nature of the terminal disease. In cancer patients, uncontrolled pain and suffering has been found to be an important factor influencing decisions to hasten death. The research findings clearly suggest that, as the Senate committee previously recommended, there is a need to develop better policies and practices in order to ensure that all patients have access to adequate pain control and reduction of suffering. Although this is true for cancer patients, research data has not found significant links between pain and suffering and the desire for euthanasia or assisted suicide in other illnesses.

With cancer patients, despite the increased availability of palliative care services for the terminally ill, as Dr. MacDonald mentioned, in Canada people must have the label of "terminal" and usually have stopped active treatment of the illness in order to have access to palliative care. In Canada, palliative care is reserved for a certain elite, usually those who suffer from cancer, who have stopped all other treatment, and who are fairly advanced in the illness. There is no indication that they are any more in need of good palliative care than persons suffering from other diseases and at other stages in the development of the illness.

Besides studies relating pain in cancer patients to the desire to hasten death, there has been considerable research in all diseases on the link between depression and the desire to end life prematurely. The majority of people who stop treatment, refuse treatment, or choose assisted suicide or euthanasia, can be diagnosed as suffering from clinical depression.

In some instances, the person was clinically depressed before he or she became ill and the illness is an additional reason to express a pre-existing desire to die. However, it is more often the case that the depression is related to the effects of the illness or its treatment. It is related to loss of abilities, social isolation, feeling useless, being a burden, and side-effects of treatment such as certain medications. It is possible that treatment of the depression will reduce or eliminate the desire to hasten death.

As I mentioned, in some instances, the depression is what is called "iatrogenic", that is, it is a side-effect of the medications used to treat the illness. In other circumstances, for example with degenerative brain diseases, the depression may be a direct physiological consequence of the terminal illness.

In any consideration of legislation to allow or facilitate means of hastening death, including refusing and stopping treatment, I believe that members of this Senate committee should consider that before allowing access to any form of a premature death, we have an obligation to determine whether the patient suffers from clinical depression and, if so, provide adequate treatment.

The basic premises underlining most arguments in favour of some form of access to a premature death are based upon the belief that, under some circumstances, a person may be better off dead. Furthermore, it is assumed that a person is capable of realizing that the circumstance exists or is imminent, or someone else, for example, a physician or family member, is capable of making such a determination.

Survey studies suggest that most Canadians believe that there exist circumstances where death is preferable to continuing to live. However, research has consistently shown that our beliefs about what we think is intolerable for others or ourselves is often inaccurate. We are not very good at predicting what we will want in future circumstances, and we are even less accurate at predicting what someone else will desire.

Finally, I would like to discuss the role of caregivers, including physicians and family members, in end-of-life decision-making. Research indicates that family members often knowingly do not respect the patient's expressed desires. Some studies show that family members tend to rely solely upon recommendations of physicians in these matters. Surveys also indicate that physicians and other caregivers tend to feel ill at ease and lack clear guidance concerning how to react to family members and advise them. There is a clear need for development of guidelines and training for physicians and other caregivers in this matter.

My review of recent research indicates that we need to conduct more investigations to better understand why some individuals choose to end their lives prematurely and others continue to live despite terminal illness or a serious degenerative disease. There is a particular need for evaluative research to determine the effectiveness of interventions and programs that may reduce the desire for a premature death in the terminally ill by suicide, euthanasia, or assisted suicide, as well as decisions to stop or refuse treatment.

Although depression is clearly linked to a desire to hasten death, we do not yet have clear indications that the relief of depression diminishes this desire. We need to test different pilot programs that focus on improving the quality of life, and controlling and reducing clinical depression, in order to determine which interventions may be effective.

The Chairman: Senators, the next witness is Dr. James Young.

Dr. James G. Young, Chief Coroner, Office of the Chief Coroner of Ontario: It is an honour and a pleasure to be invited back to the Senate hearings. It is not often that anyone wants to see or hear from a coroner a second time. I thank you for that privilege.

When I appeared the last time, it was in an educational role, to explain the practical aspects of investigating deaths and how euthanasia played out in everyday life in Ontario. The Office of the Chief Coroner took no position in regards to broadening or not broadening the definition of euthanasia.

However, we do strongly support the work of this Senate committee, including the earlier report. I would be remiss if I did not commend you for it. It was an excellent piece of work.

To recap very briefly, the Ontario coroners, who investigate 30,000 deaths a year, are all medical doctors. They investigate deaths in homes, in institutions, in all settings in the province.

Deaths where we are dealing with palliative care and with potential euthanasia fall into the two broad categories of home deaths and deaths in institutions. I will briefly recap our concern in each area.

There is no question in our minds that there are probably instances of euthanasia that occur in home settings. How many, and where and when, we frankly do not know, for a number of reasons. Very often, the coroner is not called to a home scene to begin with because the death is expected. There are no charts available; the patient usually has access to opiates and strong analgesics. If no one at the scene indicates that anything is amiss, then it is not obvious to us that there is the need for an investigation or that anything has happened.

There are occasions when coroners are called on weekends, on nights, when other doctors do not want to get out of bed, but coroners are forced to, and they do attend. We have made it clear to coroners that if they attend a scene where there seems to be an unusually large number of people, some of whom seem to be there in an advocacy role, that they should pay close attention to those investigations and, in most instances, order autopsies.

As I indicated last time, even autopsies are difficult because the patient is already on strong analgesics, and interpreting the dose level relative to the death is very problematic. However, there are instances potentially where drugs that were not prescribed may be found in the system.

Of greater concern to our office, and of continuing concern, is monitoring very closely what goes on in institutions. The risk of someone deciding that euthanasia is in order and not properly discussing it with or informing patients or families and, in fact, running amok at an institution is of concern to us. Coroners and medical examiners in North America are, unfortunately, called to investigate such cases from time to time. Again, these investigations are very complex, very difficult, but they are performed and, on occasion, do result in instances of this type being uncovered.

Our preference in Ontario has never been to debate this issue in the courts, but it has been necessary for us to have an inquest into the issue of euthanasia and three criminal trials that involved a family, a nurse, and a doctor, where we believed that life had been ended or attempted to be ended prematurely.

One reason for pursuing these cases in the courts was because we believed that these people should not be making decisions unilaterally, and that they should not be martyred for their actions but, rather, should stand trial for them.

The common feature in all of these cases was that it was very difficult to decide what to charge people with and how to proceed with the prosecution.

That led to our recommendation, which was adopted by your committee and which we still feel is very important, that the definition of euthanasia should be clear in the law and that there should be a clear section in the Criminal Code that states: "This is where you go beyond euthanasia and this is what the appropriate punishments are for that". That draws the line, wherever it may be, and firmly. It continues to be a concern to us that it is not as clear as it should be.

In inquests at the Christopher Robin Home, the issue was that the children who were receiving active care were suddenly classified as palliative without consultation with the family or adequate testing, and without adequate charting. In many instances, opiates were added to their medical regime for no obvious reason. It became a question of institutional blindness where people, we believe in good faith, felt that they were offering what they described as comfort care, but in isolation, without discussion, and without considering alternatives. The holding of the inquest became an important educational tool.

Currently, there now appears to be a little less debate concerning euthanasia. Our belief is that this is just a low point in the cycle, and that something will cause the debate to reappear at some point.

We have been involved in some investigations of euthanasia- related cases but we have had no further prosecutions in the past five years in Ontario.

We have conducted extensive education in regards to palliative care. I want to be very clear that I, along with my colleagues across the country, strongly support the concept of and the need for palliative care.

Regarding the principles that Dr. MacDonald talked about earlier, I remind the committee that when there was a raging debate about "do not resuscitate" orders, people got together and established principles that became the norm. Consequently, there is little debate any more on that topic. There is great value in establishing principles and in giving people a comfort level about palliative care.

We find, as we continue to lecture, that there is a broad misunderstanding in the medical community about palliative care. We are not looking for palliative care to be discontinued, but rather for it to be carried out in an appropriate manner. We are clear about our guidelines and we expect palliative care to take place. We expect reasonable doses of drugs to be given and we understand that those drugs may shorten someone's life and that that is appropriate. What we cannot tolerate is someone purposefully ending a life by giving either an inappropriate drug or an inappropriate dose of a drug. We want to make these issues clearer.

Since we were last here five years ago, unfortunately Dr. Kevorkian was able to continue his activities for some period of time in the United States. When one Ontario citizen crossed the border for a consultation and returned, we launched a dual investigation with Michigan into Dr. Kevorkian's activities. From a personal point of view, I am pleased to say that Dr. Kevorkian is languishing at the state's pleasure right now and is not practising his brand of judge and jury.

Over the past few years, he appeared to become bolder. He widened his methods and became even less choosy about the situations in which he agreed to intervene. Therein lies the risk or danger when one person starts out on a personal crusade.

Much of our information is anecdotal, but we believe there have been some improvements in pain care. I fully support Dr. MacDonald's comment that there is a long way to go. We hear about it when we go to investigate deaths and the families make complaints. We strongly believe that we have a long way to go in education on palliative care. I was very interested in, and would agree entirely with, Dr. MacDonald's comments.

We conclude that much more needs to be done in the area of pain control. If adequate pain control is available, many people will choose that alternative rather than considering or debating euthanasia.

We believe the Criminal Code, as I said earlier, should be clarified and a separate offence created. I know it is not on the table right now, but if ultimately there was a change, we continue to believe there would be a role for coroners and medical examiners in monitoring euthanasia.

There still remains a great deal to be done in clarifying the issues in the debate. It is very easy to produce a survey favourable to change if you ask certain questions. Asking a cancer patient in tremendous pain about euthanasia, without describing alternatives, will certainly get a favourable answer. Asking the same question of a patient on the first day of a diagnosis of AIDS may bring a very different answer. I find little solace in surveys because they are fatally flawed from the beginning, in my opinion.

Dr. Henry Friesen, President, Medical Research Council of Canada: Madam Chair, I have read very carefully the presentations of a number of witnesses, as well as the background information, and I will first offer some context for my remarks about research.

I begin by quoting from an American playwright: "To intervene in the lives of our fellow human beings, in their pain and their suffering, is the most authentic answer to the question of our humanity."

I see your focus on this important issue, in leading this inquiry, as an expression of your humanity.

End-of-life care is not only about pain and cancer. I echo the remarks of Dr. MacDonald. There is a contextual expression of end-of-life care. There are different trajectories of end of life, depending on the nature of the underlying illness. There is a different contextual arrangement that is applicable, depending on the age. It is a very different situation when a child is dying, compared to someone who has chronic illness, particularly in the form of loss of neurological function over many years. There is a difference in the family support systems that encourage and support individuals who are dying. There is also an acknowledgement, as I read the views of a number of experts, that we simply lack a lot of baseline information, so that when we try and evaluate whether progress is being made, too much still depends on anecdote.

Finally, as part of the contextual statements, I also recognize that end-of-life care is part of Canada's health care system, with its varied expressions in the different provinces. A provincial role and responsibility is paramount in considering this issue.

I will address particularly the role of the agency that I have the honour to head, the Medical Research Council of Canada, as the lead federal agency supporting research coast to coast, across the full spectrum, including end-of-life care research issues.

I am also here to tell you what Senator Carstairs has already indicated: The MRC's proud record of achievement and its legacy of 40 years' contribution to developing the research capacity in this country will end when Bill C-13 is enacted, and will have its new expression in the Canadian Institutes for Health Research.

The question is often asked, how much does the Medical Research Council invest in end-of-life care research issues? The question is straightforward, but I must tell you the answer is not. Science is an endless frontier and end-of-life issues have many antecedents. Arguably, research into those antecedents is part of end-of-life research.

Let me give you an example. Dr. Tony Yaksh is one of the premier authorities in the world on pain management. His insight was developed in pursuit of an inquiry into pain mechanisms in the spinal cord. There are today, literally millions of people around the world who benefit from the application of his insight into pain management at various stages. Research can focus on the care of people with terminal illnesses, but, happily, terminal illnesses of yesterday are now treatable and sometimes preventable illnesses today.

I graduated when there was a raging polio epidemic in Winnipeg. Today, indeed for the last decade, there is no more polio in the North American hemisphere. When I graduated, the management of the terminal illness of individuals with polio was a huge challenge. How do we cope with individuals in iron lungs on a protracted, chronic basis?

I am here to tell you today that all of us observed the anguish of Sue Rodriguez confronting Lou Gehrig's disease, amyotrophic lateral sclerosis. The mechanisms of the etiology that lead to the loss of the same kinds of nerve cells that were destroyed by the polio virus are, in fact, affected by Lou Gehrig's disease. In my view, we are not far from the day when, rather than being focused on how to manage and support those who suffer inexorably leading to death from Lou Gehrig's disease, we will see that turned around by prevention or therapies. It is a similar situation for AIDS. Just a few years ago, it was inevitably a death sentence. Today, it is in many cases still a very difficult illness, but in fact it is becoming a chronic care issue as opposed to a terminal illness.

End-of-life issues have many expressions and the tempo and style of those expressions are variable. Science is a continuum, an endless frontier, where all the insights and tools, from the most fundamental knowledge about molecules to its application to the research, the social sciences, sociology of communities, impact on the agenda.

I looked carefully at the situation five years ago, when you issued your report, and compared it to today, where we see a substantial increase in investments. We chose at that time to broaden our research portfolio. Today, $16 million is committed by MRC to literally hundreds of projects in support of end-of-life care, many of them, of course, focused on pain. Let me illustrate and offer a few examples: In psychiatric dimensions of palliative care, you heard from Dr. Chochinov, who raised and touched upon some of the same issues that you heard about today from Professor Mishara; quality of life following admission to palliative units, Dr. Cohen from McGill; quality of life and psychosocial impact of chronic disease; evaluation of chronic pain; self- management programs; pain in children, a program undertaken by Professor McGrath, who is also one of Canada's distinguished scientists, funded by the MRC.

I am also here to say that palliative care research is underfunded. For research to flourish, you need four essential elements. You need people, and Dr. MacDonald spoke about that. The Canadian Palliative Care Association has made the point that we need to build capacity. We need to provide and invest in people, because no amount of money thrown at a problem, particularly in research, will lead to helpful solutions if there are not people who are able and capable of using that money carefully and appropriately. You need facilities. We heard again about a supportive environment from Dr. MacDonald. Medical faculties seem not to appreciate and invest adequately. It again indicates that no one organization or institution can in fact provide all the solutions.

I am here also tell you that MRC has established a first-step program with the Canadian Palliative Care Association to build partnerships and to seek joint funding for individuals eager to embark on a career in this area. It is the first program of its kind.

I am also here to tell you that I think we are on the threshold of a whole new organizational, institutional approach -- a modernized health research enterprise in this country that will be built once Bill C-13 is in place. It will create the Canadian Institutes of Health Research, which have as their most fundamental goal and objective, building an environment that is internationally competitive. The Prime Minister has said Canada must be a place where new knowledge in its fullest expression is created, from the most fundamental to the most applied. We need to see an integrated vision for health research, and attention being paid not only to fundamental science, but to its application, translation, adoption and dissemination, for the benefit of Canadians.

There is an opportunity, in this new structure, for organizations like the Canadian Palliative Care Association to have systematic input into priority setting. The Canadian Institutes of Health Research will have the capacity to invest strategically in a way that the MRC was unable to do. The National Health Research and Development Program, one of the components of Health Canada, will be incorporated into the Canadian Institutes for Health Research, and that whole area will become part of their portfolio, as will MRC's.

The transitional programs that have already begun with the new funding provided by the government will again provide new opportunities. One of those is the Community Alliances for Health Research, where organizations like the Canadian Palliative Care Association, in partnership with researchers, can put forward ideas and proposals that can be supported by the Canadian Institutes for Health Research.

I look forward to a new era, a new opportunity, where the important issues that will affect us all very intensely and personally at some stage in our lives, will be more appropriately addressed with knowledge generated by greater investment in more focused research than has ever been the case; and where there will be encouragement of an interdisciplinary, integrative health research environment developed through the CIHR. I look forward to seeing that bill move forward from the House to the Senate and ultimately adopted and proclaimed.

The Chairman: Our last presenter this morning is Mr. Russel Ogden, who also appeared before us in our first consideration of this significant issue.

Mr. Russel Ogden: Honourable senators, I thank you for the invitation to speak with you this morning. You may recall that when I appeared over five years ago, I called for research into the illegal behaviours of assisted suicide and euthanasia. Therefore I was especially pleased that your report "Of Life and Death" recommended an investigation into the frequency of requests for assisted suicide and voluntary euthanasia, the reasons underlying such requests, and whether there were alternatives acceptable to those who make these kinds of requests.

I would like to be clear that I am not here to discuss whether illegal death is right or wrong. My interest as a researcher is in understanding why some people ask to be killed and why some people agree to help them to die. I believe that you will agree that these questions are of fundamental importance to end-of-life care and that they also have obvious relevance to Canadian criminal law.

As a researcher, I would like to talk about the kinds of barriers that I have encountered in trying to conduct the very sort of research that "Of Life and Death" recommended five years ago. I suggest to you that without designated funding, and without explicit governmental support for such research, it is unlikely that academic institutions will help us get much closer to answering the research questions that were posed in Chapters VII and VIII of "Of Life and Death".

In my written brief in 1994, I suggested that inquiries into assisted death issues needed to be supported by some form of protection, perhaps by the Minister of Justice. You might recall that when I spoke with you then, I had just completed an investigation into the "underground" phenomenon of assisted death amongst persons with HIV.

When I first appeared before the Senate committee, that study was a matter of ongoing concern. It was the subject of an inquest before the Vancouver regional coroner's office. In an effort to learn more about a woman who had been suffocated after a failed assisted suicide, the Vancouver regional coroner sought to compel me to disclose confidential information that I had obtained during the course of that research. I refused to reveal the information because it would have undermined the confidential relationship that was central to the research in the first instance. Obviously, I could never have learned about secret, illegal acts of assisted death if people thought that they would be brought before a court as a result.

Ultimately, the coroner determined that I had a public interest privilege to protect the privacy of my research participants. The common law test that was applied in this case is known as the Wigmore criteria. That is a case-by-case test. According to recent legal opinion from University of British Columbia law professors, Michael Jackson and Marilyn MacCrimmon, the Wigmore criteria may be the best option for researchers who wish to challenge the ability of a court to force the disclosure of confidential research information.

When I was defending the privacy of my research participants before the coroner, I argued that the integrity of the research enterprise demanded that researchers not be perceived as an arm of the criminal justice system. Unfortunately, the administration at Simon Fraser University, where I conducted the research, did not share the same concerns for academic freedom and declined the opportunity to support the argument in the coroner's court. This sent a negative message to researchers who investigate illegal behaviours. Indeed, the criminology school at SFU took steps to warn all prospective graduate students that they could not count on support from the university administration if complications were to arise in the course of their research into sensitive behaviours. As you can imagine, that altered the nature and scope of graduate research at that institution, and perhaps elsewhere. It was not until four years and a day after the coroner's ruling that the Simon Fraser University president issued an apology and stated that the university had been wrong in its failure to defend freedom of academic inquiry.

Nevertheless, there is still widespread concern that the university does not wish to facilitate research into highly sensitive topics such as euthanasia, prostitution, or illegal drug use. I understand that the current climate is such that there is no way that a graduate student or a faculty member would be permitted to conduct research under the protocol that it had permitted me. Specifically, the university no longer allows researchers to give assurances of absolute confidentiality to their participants. This is tragic because it is stifling empirical inquiry into critical social policy areas. It stifles the very research that you have called for, into requests for euthanasia and assisted suicide.

You heard testimony earlier from the NHRDP that there has been funding available for end-of-life research in the form of "synthesis" papers, and that this is a very safe way to do research. It seems to be the new direction for sanitized and safe academic inquiry. However, I submit that evaluation research of this kind, while it is very useful for bringing together what we already know, cannot inform us in the same way as direct empirical investigation.

The institutional barriers to conducting research into assisted death are not unique to Canada. After the "Of Life and Death" report recommended further research on this topic, I took up Ph.D. studies at Exeter University in England. There I completed more than 100 interviews in four countries: England, the Netherlands, the U.S.A., and Canada. Again, I was researching end-of-life issues with respect to voluntary euthanasia and assisted suicide. Near the end of that field research, it was discovered that the Chair of the departmental ethics committee had secretly altered the original ethical approval and the statement of university support for sustaining confidentiality in the research. He insisted that the ethical approval of the research had not been, "revised, rescinded, or countermanded". However, that was a complete misrepresentation. The informed consent of all my research participants was undermined and the research conditions under which I thought I was working never really existed.

Exeter University held an inquiry that found "the ethical approval of Ph.D. research was mishandled and demonstrated serious incompetence and subsequent misjudgment by the department". It found that the supervision of the research was both inadequate and unsatisfactory. I use these words freely because they are the language of the university's own report, but to this day, Exeter University still refuses to clarify the true nature of the ethical approval of that research, despite a clear directive from its own university senate committee of academic inquiry that it should do so. This kind of institutional inertia has grave consequences for research and researcher morale.

Therefore, I am very sorry to tell you that although my research fell squarely within the scope of the "Of Life and Death" report's recommendations from chapters VII and VIII, I have not yet found a way to revive it. The message here is that academic institutions do not, at this time, provide the necessary fertile environment for implementing the Senate committee's recommendations for research into assisted suicide and voluntary euthanasia.

I would like to suggest some potential solutions to this problem. First, there needs to be independent funding targeted at the research recommendations in chapters VII and VIII of the "Of Life and Death" report. This funding should be open to qualified researchers who are not necessarily working within an institutional setting. Second, there needs to be some kind of protection for participants and researchers in order to facilitate the collection of data and its security.

As I said in 1994, and I repeat, perhaps the Minister of Justice could authorize confidentiality provisions. These provisions could be similar to those that are already available to Statistics Canada researchers. Another alternative protection might be the equivalent of what are known as "privacy certificates", which are available in the United States through the U.S. Department of Justice, or there might be something known as a "confidentiality certificate". This is available through the Department of Health and Human Services in the United States. The Senate should explore the possibility of implementing these kinds of protections for researchers in Canada.

Finally, I should like to briefly address the "Of Life and Death" report's unanimous recommendation that voluntary euthanasia and counselling assisted suicide remain criminal offences. As I stated earlier, I am not here to debate the right or the wrong of these crimes. However, I do wish to inform the committee of some new developments within the underground assisted death movement.

I call this movement a "deathing counterculture" because its constituents see themselves as providing what they call "deathing services", much the way a midwife or a physician might participate in birthing. This so-called "deathing counterculture" is organized and sophisticated. You heard from Dr. Young about Jack Kevorkian broadening the scope of his activities. This movement is not much different. Its members have pioneered what they call the "NuTech" initiative. This is a technological imperative to develop non-pharmaceutical devices that bring about rapid and painless death. It appears that they have achieved this goal because the movement has produced an array of devices that can cause painless death in a matter of minutes. They are relatively easy to construct and require none of the substances or precursors that, you heard earlier, are under the jurisdiction of the Canadian Therapeutic Products Program.

Indeed, most of the necessary components for these devices can be purchased at large retail outlets. As these NuTech devices require no injections and no lethal doses of medication, there is no "smoking gun" to suggest any foul play. To be sure, numerous field trials by this organized, underground movement suggest that the true cause of death from these "deathing" devices is consistently undetected and overlooked.

I bring this to your attention because the underground technological imperative to create non-pharmaceutical methods for assisted death raises serious challenges to the health care professions, legislators, and policymakers. The NuTech devices raise many of the same issues as the morning-after pill because they generate distance between patients and their health care providers when it comes to discussion of end-of-life decisions.

This underground movement is virtually unstoppable and it appears to be a growth industry. I have no solutions for you on that. This is an entrepreneurial response to what are seen as barriers to legal medically assisted death. It is an outcome of prohibition. It is characteristic of what we have already seen many times with respect to other taboo behaviours. I raise this because we need to consider the consequences of choosing prohibition and social control of assisted suicide and voluntary euthanasia.

Senator Beaudoin: My question is addressed to Dr. Young. You said that at least some sections of the Criminal Code have to be clarified?

Dr. Young: Yes, sir.

Senator Beaudoin: It is my understanding that you were addressing at least two areas, namely, withholding of treatment and refusal of treatment. Is that what you are suggesting, in those two fields, or in other fields?

Dr. Young: I would establish a separate Criminal Code section that defines an offence called "euthanasia" and the punishments for it.

The problem the courts run into when there is a case that may contravene the current Criminal Code is that there is a huge debate among Crown counsel and police as to what charges should be laid. Do we lay first or second degree murder charges or manslaughter charges? Most commonly, in Ontario, we have ended up settling on "administration of a noxious substance," which is a long way from what was originally intended by that section.

Along the same lines, the courts have wrestled with what is reasonable punishment. If the offence were clearly enshrined in the Criminal Code, including the range of punishments, that would then become much less of a problem and would add clarity to the debate. The definition of an offence can change and I am not arguing for or against what it should be. I am simply arguing that there should be clarity.

One important element in keeping a rein on activities is clearly defining the line and some ability to adhere to it. That is the problem we run into now.

Senator Beaudoin: At the time of the previous report, the name of Sue Rodriguez was often in the news. The ruling at that time covered the question of assisted suicide to a certain extent and, indirectly perhaps, euthanasia.

The previous report contained unanimity in at least three or four fields: palliative care, withholding of instruments, refusal of treatment, and some others. The purpose of this committee is to give effect to those subjects on which there was unanimous agreement amongst senators.

The Chair of a group of doctors in Canada said that we do not need any change in the legislation. He is from Montreal.

The Chairman: The representatives from the Royal College of Physicians and Surgeons did not agree with a need for new legislation, although the Canadian Medical Association holds an opposite view.

Senator Beaudoin: They said that we do not need to change the Criminal Code. I was surprised by their comment, but that is an interesting proposition.

You said that you are in favour of modifying or amending the Criminal Code. I come to the conclusion that we need more clarity in the code for caregivers -- doctors, nurses and so on. They need to know what they have a right to do and what is not legal.

At present, we are not dealing with euthanasia and assisted suicide per se, but rather with all the other aspects of the first report. Even in that field, I am inclined to think that we should not rely only on jurisprudence, be it in Quebec, Ontario, or other provinces. We need a clearer Criminal Code on those subjects.

The Criminal Code is amended often. It is a difficult part of the law, but a very important one. On the withholding of instruments and the refusal of treatment, perhaps we may improve the Criminal Code in those two fields.

I do not see many problems in the field of palliative care, as criminal law is not involved in that. In what way do you think we should amend the Criminal Code, for the purposes of this committee?

Dr. Young: The area I spoke about falls within your mandate. Justice Sopinka stated in his ruling that there is a clear point at which someone is committing a criminal act. The problem is in interpreting that point. Anything we can do to add clarity to that would ensure that people understand the concept has the effect of promoting palliative care as well.

The changes I am proposing add clarity. I am not asking that any lines be changed, I simply ask for clarity. I think a separate Criminal Code definition of euthanasia and a set of punishments would go a long way toward that clarity.

I knew that there was some debate among the physician groups, but they are not dealing with the subject every day on a practical level, and I am. It would be very useful if the subject were better defined, which would also serve the current interests of this committee.

Senator Beaudoin: We have two schools of thought here. Some people say, "Leave it to the doctors. Leave it to the courts if there is a problem." Other people say, "Better criminal law will solve this problem." I am attracted by the second.

To leave everything to the courts, even if we do have a good judicial system, is not possible. We -- the members of the Senate and the House of Commons -- still have the obligation to make good laws. I am of that school. My impression is that we should, perhaps, in our report, make some propositions to that effect and not leave it entirely to doctors, nurses, and the courts, as they do in some countries. In this country, we should select the second school of thought.

You are dealing every day, as a coroner, with death. Your experience is very important to us. If you say that we need more guidelines, more information and better laws, I will buy that. I think that is the solution.

Dr. Young: I am always pleased when someone agrees with me. As someone who works in the justice system every day, I came to the conclusion long ago that the less left to that system the better. It is cumbersome and not the best way of resolving any issue.

Senator Beaudoin: I would not go that far, however, because I have a tremendous admiration for our judicial system.

Dr. Young: I do too, but it also causes lots of problems.

Senator Beaudoin: Supreme Court decisions over the past five years have told Parliament, "Do your job, and we will do ours." They do a fantastic job. The legislative and judicial branches of the state must do their work. That is all I am saying.

Dr. Young: I am suggesting that, even if clarity is added, the courts occasionally will have to act. The problem now is that there is not sufficient clarity. A lot of the cases and problems could be avoided by clarifying things. You will never eliminate the courts from the issue. However, it is much easier for the courts to act when there is a clear line, and it is then a question of whether or not behaviour crosses that line. Leaving too much to interpretation causes inconsistencies for physicians and nurses. Different practices can arise across the country because different people interpret the same law differently. I do not think that is healthy, particularly when those doing the interpreting are not trained in the law.

The Chairman: Dr. Young, would you say that, in the Province of Ontario, it is almost impossible to convict for euthanasia and assisted suicide?

Dr. Young: Certainly in our experience, it is extremely difficult. There is no offence called "euthanasia", so you are trying to fit a square peg into a round hole. We have had convictions for the administration of a noxious substance, but it was quite a square peg in a round hole at that point. Two of those cases went from first degree murder, all the way down past second degree, manslaughter, and assault, and into administration of a noxious substance. It was difficult and awkward, but, by the same token, the province felt that the actions were outside of the norm to a degree where they had to be dealt with in the courts. That was the best we could do.

Senator Corbin: Dr. Friesen, you alluded to underfunding of research in the field of palliative care. I presume you were talking about government funding. What private sources of funding are currently available? Are you aware of whether pharmaceutical companies, or other bodies of that nature, are doing any serious research respecting palliative care?

Dr. Friesen: The funding of research in Canada has four major contributing sectors: the federal government, the provincial governments, the voluntary sector, and then the private sector, or industry. The pharmaceutical industry is the largest single investor today, to the tune of about $1 billion per year. Within that portfolio, there are many examples of research that impacts on end-of-life care issues. One of the major examples is AstraZeneca, which has set up not quite a world product mandate class, but close to it, in pain mechanisms, discoveries, and molecules, in Montreal. Why did they choose Montreal? It was because there are some very innovative researchers in Montreal who have made important new discoveries about molecules that could be developed for a whole new applicability in pain management.

The short answer to your question is yes, there is substantial private sector investment. My latest information is there might be 120 people engaged in that one effort in Montreal. It is only one example. There are a number of others like it -- but not perhaps on the same scale.

There are also many clinical trials involving new therapeutic agents and products that are funded by the private sector. There are, of course, some more modest investments by local community foundations and volunteer groups. The most notable among those would be the support generated by the Canadian Cancer Society and the National Cancer Institute.

Senator Corbin: In terms of private involvement in this type of research, are the results generally available to the professional community at large, or is it restricted, confidential information because of considerations such as propriety rights, the development of medication, and so on? What is the score there?

Dr. Friesen: All the knowledge generated through research investments by the federal and provincial governments and voluntary agencies is in the public domain. I would guess that the knowledge generated with primary support from the private sector, to a considerable degree, emerges in the public domain rather more quickly than in the past. This is particularly so if there is a partnership initiative with the federal government, as in the case of the MRC. All of those research topics are published. The lists are available.

The barrier to application lies not so much in whether it is in the public or private domain, but rather in the dissemination and use of the new knowledge. It is being generated in ever greater amounts, with ever greater speed, so that even a practitioner who is trying to maintain his or her currency has difficulty absorbing all the new information that could be utilized to advantage.

One new trend is that more knowledgeable patients or clients more often than not now come armed with Internet-generated information that they have assembled. There is a more informed dialogue between the patient or client and the practitioner, in which the client will say, "Doctor, I have seen all this new information. Why are we using this medication versus that?" It is an interesting new aspect of professional practice, and in my view, it is probably a healthy one.

Senator Corbin: Dr. Young, to continue the exchange you had with Senator Beaudoin on clarifying certain things in the Criminal Code, I gather that you were not promoting murder for compassionate reasons?

Dr. Young: No. I am not saying there should be any change necessarily in the definition. I am saying that whatever definition we are using -- and assuming we stay with the current definition -- it should be clear in the law, with a clear Criminal Code offence that says "to go beyond this is euthanasia and here are the appropriate penalties for that".

Senator Corbin: Dr. Young, I would like to get your reactions to Mr. Ogden's comments about the organized, underground "deathing services". Does that pose a problem for you?

Dr. Young: It poses a large problem. I am aware, anecdotally, of the reports on this. In Ontario, we have not been able to expose such things firsthand. I have a suspicion that he may be right, that things are moving in that direction, and for the reasons that I stated. First, we are not often called to a home situation, and when we are, we are largely limited to the information that we are given. If it can be demonstrated that someone was terminally ill, and those present appear to be behaving appropriately, it is difficult to do anything about it. In most cases, suspicions are aroused either because someone says or reports something that launches an investigation or, in the case of hospitals, because there is an unexpected element to a death.

Senator Roche: Once again, I am driven back to one of my principal concerns. It seems to be almost impossible to draw a sharp dividing line between palliative care, which we support, and moving toward euthanasia. The testimony this morning has been quite remarkable in that respect. I took from Dr. Young's comment that under an umbrella of palliative care, and often in individual homes, there are some suspicious cases. I will leave that comment for now and invite Dr. Young to make any additional response that he wishes.

Mr. Ogden has given us what I would almost call "bombshell" testimony. Although I thought I was following this field of study fairly closely, I did not know that there was an underground assisted death movement, which he is calling "deathing counterculture". He says that it is an organized, underground movement that is virtually unstoppable and appears to be a growth industry.

I suggest that we take this testimony very seriously, if it is credible -- and I am not suggesting that Mr. Ogden's testimony is not credible -- or we dismiss it. It is tantalizing, but there is insufficient empirical evidence that this deliberate development of a death industry is taking place. I am left with the same confusion that I have expressed before: How can we discuss palliative care and the need to strengthen all the bases for it without also addressing Dr. Young's testimony -- and I will invite him to respond first -- about there being a line that people must understand they cannot cross?

Dr. Young: There are a number of public organizations dedicated to ensuring that people are comfortable and can die with dignity. I am not using the name of any one in particular. There are also groups such as the Hemlock Society, but whether or not those groups represent what Mr. Ogden was talking about, I honestly do not know. I do not know the extent of their activities because they are very difficult to investigate. The book published by the Hemlock Society, which indicates how to induce death chemically, has created major problems for coroners and medical examiners across North America. In many instances, it became a primer for people who were not terminally ill, but who rather were depressed and wanted to commit suicide. If these mechanisms exist -- and I do not know that they do -- could they and would they be misused? My suspicion is they would be. The book was used and misused. The underground movement involved in that book grew. Beyond that, I would have to defer to Mr. Ogden. I am in the unenviable position of wondering if it indeed exists and I cannot find it.

Senator Roche: Before we go to Mr. Ogden, Dr. Young, morally acceptable and legally permissible palliative care includes, among other things, the withdrawal of treatment and the administration of morphine in very large doses. Is it your professional opinion that these two instruments are employed deliberately to hasten death in some of cases to which you have referred?

Dr. Young: I am not sure whether I would include withdrawal, although it could hasten death. The fact is that it is the person's right to refuse the treatment. I would be inclined to say that falls within an acceptable range. Are medications used to hasten death? It is my belief that this does happen on occasion.

Senator Roche: Therefore, as this committee discusses the enhancement of good palliative care, we would have to point out that this overuse of drugs is not acceptable?

Dr. Young: That is important. Clarity in drawing a line is very important. With the promotion of good palliative care, the chances of people then wishing to intentionally cross that line diminish. That is why I support Dr. MacDonald's views so strongly. They are one more step, along with the clarity, in ensuring that people stay on the right side of that important line.

Senator Roche: That point has been made frequently in the testimony and has been helpful.

Mr. Ogden, I start with your last sentence: I raised this business about the underground movement "because we need to consider the consequences of choosing prohibition of assisted suicide and voluntary euthanasia rather than other forms of regulation and social control."

With great respect, I do not know what you are talking about in that sentence.

Mr. Ogden: When I referred to the consequence of choosing prohibition, I meant that it forces people to pursue alternatives that they cannot achieve through the legal system.

For example, if an individual cannot access a legal assisted death, and is convinced that euthanasia is desirable, he or she will find the means. In this case, the means involve a number of devices that I have alluded to here. One of them is known as a "de-breather", which literally recycles one's own air until oxygen is depleted and the body dies. Others devices involve the breathing of inert gases, such as helium and nitrogen. Death from breathing these gases, which are readily available in our own atmosphere, occurs within a matter of minutes. Some reports state as quickly as six or seven minutes.

The point I am trying to make is that when we prohibit certain behaviours, and members of the public still desire to engage in those behaviours, they will find other ways of doing so. Prohibition of alcohol leads people to construct their own distilleries. Prohibition of prostitution means that people will still find other, illegal ways of engaging in it. Prohibition of legal assisted death means that some individuals will still find ways to access this kind of service.

The benefit of supporting regulation and other forms of social control is that, if we are open to the legalization or quasi- legalization of certain behaviours, we can bring them under some form, not only of state observation, but also professional and societal observation.

I know that this committee is not comfortable with importing the Dutch experience into Canada, but one of the outcomes of regulating euthanasia in the Netherlands is that assisted suicide in that country is actually a very socially controlled behaviour. Over the last 20 years, access to euthanasia and assisted suicide has become increasingly regulated in Holland. There are currently far more social controls over those behaviours than previously.

Senator Roche: Are you an advocate of the Dutch experience?

Mr. Ogden: I would say that there are benefits to the Dutch experience, but I do not know whether it is exportable to Canada. I think that we must solve these problems here.

Senator Roche: I took it from your testimony about this underground movement that someone -- whether it is us or some element of the law -- should do something about it. Your testimony leaves me in some confusion; it may be my own inadequacies.

I do not know what to do about this testimony, Madam Chair. I do not know whether to take seriously that there is an underground movement and pursue it to see if there are more facts, and invite the witness to give us more detailed information, or dismiss it.

The Chairman: To pursue it at this point, quite frankly, would not be relevant to our study. However, what is relevant is that we did make a recommendation that research should be conducted in this country to find out why people want to access euthanasia and assisted suicide. That was one of our unanimous recommendations.

What is relevant from what Professor Ogden has said today is that that research has not been conducted. In fact, if I understand correctly from Mr. Ogden's presentation, not only has it not been conducted, but also, at least specifically in your case, obstacles have been put in your way. Is that essentially what you wanted to contribute today?

Mr. Ogden: Yes.

Senator Roche: If there is an underground movement -- a growth industry, as Professor Ogden says -- that promotes death, do you not think the public and the Parliament of Canada should know about it? We should understand its full dimensions before we attempt a report that will deal with this whole area.

The Chairman: Except that we would then be going into non-unanimous recommendations of this committee. If you give careful reading to what we wrote in our first report, you will note that we knew then of evidence that euthanasia and assisted suicide, for a variety of reasons and by various means, was going on in Canada.

Senator Roche: However, he called it a growth industry.

The Chairman: Whether it is a growth industry, whether or not it has grown since 1995, we do not know, since we decided deliberately not to look at euthanasia and assisted suicide.

It is also fair to say that we did hear evidence, and not just from Mr. Ogden, that people were committing euthanasia themselves. They were getting assistance in euthanasia from others, even in 1995. I do not think that it is in this committee's interest at this time to go down that particular road.

I have a question for Professor Mishara, who thus far has been left out of all this.

I read with great interest your Omega article, particularly the detailed research you did to make the connection, as has Dr. Harvey Chochinov, between dying and depression. However, the fundamental question is, can you force treatment for depression on people? You cannot force any other treatment on them.

Mr. Mishara: I do not think that is the main issue. It is a question of recognizing that depression may be present. This is the problem with technical solutions such as legislation, which inhibits certain behaviours and permits others.

For example, right now people very clearly have the right to refuse or stop treatment. That is a technical solution, but we know that many people who decide to stop treatment are clinically depressed. No one has said, "Maybe that person is clinically depressed. Maybe that person should be offered some treatment or help, or counselled about this." The only legal solution we have is a technical one; that is, "This is a right. I say, stop treatment". The issue becomes not what is inhibited or permitted, legal or illegal, but the obligations of a society to understand the complex dynamics involved in life/death situations and to provide services.

Obviously, there is not much one can do if someone says, "No, I do not want to take any antidepressants. I do not want to talk to anyone about it. I just want the machine unplugged." You have a very clear right to refuse treatment. That is something that is unchangeable.

However, in research and in proposing solutions, it is easier to decide that we will spend our money on pain medication There is a lot of research going on, but it is mostly in the area of pain control, while other, psychological dimensions are ignored. Dr. MacDonald proposed some criteria for good palliative care that go far beyond simply controlling pain. This is relevant to issues like the underground death movement. If people are, for whatever motivations, seeking out a premature death, there will be means of finding it. No one who engages in the compassionate murder of a loved one is really thinking, at the moment, "This is illegal. I might go to jail for it." They are thinking, "Someone I love is suffering. I have to do this."

The problem is that the technical solutions are not necessarily adequate. This whole process of education and awareness and providing information is much more difficult to ensure. From my point of view, it is much more important than making something now legal illegal, or proposing very technical solutions.

The Chairman: The fifth core principle of the document presented by Dr. MacDonald refers to assessing and managing various problems, and I think the order given is important. It references psychological, social, spiritual, and religious problems. You see an assessment of and treatment for depression as part of quality end-of-life care, if it is desired by the patient and perhaps the patient's family?

Mr. Mishara: Yes. There are clear indications that this is not often available. Currently, when it is available in Canada, it is for a certain elite who suffer from cancer, who have refused further medical interventions, and who have managed to live in a large city where good palliative care service is available.

Senator Beaudoin: Dr. Mishara, at the end of your presentation, you state, "Research indicates that family members often knowingly do not respect the patient's expressed desire. Some studies show that family members tend to rely solely upon recommendations of physicians..." You conclude from that that "Physicians and other caregivers often feel ill at ease and lack clear guidance concerning how to react to family members..."

We need guidelines, but the situation may vary from one province to another. Some provinces already have legislation to which the doctors are obliged to give effect. For example, we are improving more and more the area of living wills, of writing down the mandate and the "procuration", as we say in French. These documents are legal and binding on doctors and caregivers.

What do you suggest on the development of guidelines? For me, it may be partly a question of law, but perhaps you have something else in mind.

Mr. Mishara: In some cases there is a written, signed document, but often there is not because people do not anticipate that their situation will worsen, that they will become comatose or unable to make decisions for themselves.

There are studies available from other countries, and I have no reason to believe that Canadian results would be any different. For example, in Israel a lengthy investigation of just who is making the decisions was undertaken. Very often, when a person is incapacitated, the family is consulted. "What do we do? Do we unplug the machine?" This is a very difficult situation. The research suggests that family members will often make a decision that is more consistent with what they think is best for the person, regardless of what he or she has said earlier. A person may have said, "I want to be unplugged. I do not want to continue living," but a loving family member will not have the heart to do it.

The studies report that when family members are asked how they came to their decisions, they often respond that they asked the doctor what to do.

Again, we go to back to Dr. MacDonald's testimony. There is very little training in medical schools about how to respond when a family member asks a doctor what to do. This is rarely part of a doctor's formal medical training, and even if it is, we do not have guidelines that state under what circumstances to give what form of advice. The doctors often feel very ill at ease.

That result has been expressed in surveys in Ontario, for example, of physicians regarding requests for euthanasia by family members and individuals. They want to know how to answer when someone says, "What do I do?" There needs to be some sort of formal consensus that is included in the training.

I also touched on the issue of informed consent. All research to date suggests that what people say they would like in the future is not necessarily related to what they actually want, if they are conscious and capable of expressing that desire, later on. This poses ethical issues and practical concerns because there is an incredible inconsistency. It is very easy when you are in good health and not dying to say, "If I was ever hooked up to a machine that was keeping me alive, I would like to have it unplugged." However, when you are actually hooked up to that machine and facing death, very often you do not feel the same way about things. There are moral, legal, and technical issues with advance directives.

Technical solutions are often not adequate. We can pass a law saying that people must write out their wishes and others must respect them, making everything clear, or we can regulate additional pain medication, but what we really want is to humanize care, and that is something that cannot be legislated. Policies and practices must be developed and then made available.

Senator Beaudoin: If someone states in his will that he wishes not to be resuscitated in a certain situation, and if the family asks the doctor to ignore that will, the doctor would be taking a chance, because a will is a will.

Mr. Mishara: A will is a will but, in practice, the doctor may ask the family if there is one, and family members can answer any way they want. The will is not automatically transferred to the doctor.

Senator Beaudoin: In some provinces, it is registered and we the jurists try to refine the system. Of course, the will states something, but it must be read.

Mr. Mishara: In an instance of clear directives, the doctor must follow them. However, in many circumstances, there is no will and no indication, but for a family conversation or discussion at some point in time.

The studies I mentioned, where family members do not necessarily respect their wishes, reflect those instances where they report what the person said they wanted, but subsequently make another decision on advice from the doctor. I do not know what percentage of Canadians have living wills of some sort. The other issue is that people are fickle in terms of what they thought they would want 10 years before when they made out their living wills.

Senator Beaudoin: It is law in the making, as we say.

Senator Corbin: My question is to Dr. Young, and perhaps Professor Mishara may wish to respond too, because being the serious person he is, Dr. Mishara would weigh his words carefully. He relates survey studies and talks about research.

Dr. Young, you said that surveys are flawed from the beginning. You even went so far as to qualify the word "flawed", but I forget how.

Dr. Young: Yes.

Senator Corbin: One objective of this committee is to ensure that we do come up with precise, non-controversial definitions that everyone plainly understands, whether in the field of medical practice, or criminal law, or just John Q. Public. Why is it that you do not seem to have any faith at all in surveys?

Dr. Young: I should qualify that. I accept what I said, and I said it in strong terms. The type of survey to which I referred is the poll that asks, "Are you in favour of euthanasia?"

Senator Corbin: Precisely.

Dr. Young: The question is vague and can elicit many answers because different people think of it in different terms.

Senator Beaudoin: That is right.

Dr. Young: Most people would answer "yes" in the case of someone with intractable pain, leaving aside the argument of whether or not it can be treated. If you then ask, "Are you in favour of euthanasia for parents with Alzheimer's disease," fewer people would say "yes". However, the survey question does not ask that and does not make that distinction. In my mind, they are answering the question in terms of whether or not the suffering person deserves euthanasia. However, that could include Alzheimer's patients, persons who are retarded and have serious medical conditions, and people with a terminal disease, if we forget that AIDS is not as terminal as it once was. About 10 years ago, we had cases of attempted suicide in Toronto in which a doctor was convicted. He gave sleeping pills to two patients the day they were diagnosed as being HIV positive. That could fall under the definition of, "Are you in favour of euthanasia?"

My problem is that the question is not specific enough. I have not seen a general survey of Canadians on euthanasia that gives enough detail that I am confident that we are getting the right answer. That is my concern. I hope that clarifies it.

Senator Corbin: Perhaps the scholar has some comments.

Mr. Mishara: I agree fully with Dr. Young. There are two types of information we can obtain from surveys. One is attitudes and beliefs, and the other is information about behaviour and practices. It is one thing to ask, "Did you do something to have your mother's death occur earlier," or on a survey of physicians, "How many patients have you had who have requested that you do something that ended their life earlier? How many times have you engaged in this behaviour?" Those data give us a good indication of the extent of the practices in the country.

However, on the types of things that Dr. Young mentioned, such as attitudes, "Are you in favour of such and such," you find that people have different understandings of these words. Even if you give the definitions and you get reliable indications of what people believe, this has little relationship to their behaviours. One example is that most Canadians believe that people who suffer from chronic degenerative diseases should have access to euthanasia and would want to end their own lives in those circumstances. In fact, people say, "If I ever had a chronic degenerative disease, I would want to die rather than continue to live." However, the research studies have consistently found that people with a wide range of chronic degenerative diseases are no more suicidal or desirous of dying early than the general population. Some studies have found that they are less suicidal and less desirous of an early death.

Those attitudes must be interpreted with a great deal of caution. However, there are surveys of behaviours and practices that give us valuable information.

Senator Corbin: Is it your view that the media treats these surveys with the necessary caution in their presentation to the public?

Dr. Young: At the risk of offending the media, I think sometimes they get misreported and we hear that Canadians are in favour of this or against that. I am always very cautious for that very reason. I agree with the professor on the other kind of questions. I think there is much more reliability to them. Yes, they are misinterpreted, in my view.

The Chairman: Thank you very much for your presentation.

I will ask everyone except the senators and the immediate staff to leave now. I wish to go in camera for a few minutes.

The committee continued in camera.