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

Issue 9 - Evidence

The Subcommittee to Update "Of Life and Death" of the Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:00 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: Today is our ninth day of hearings under our mandate to update the unanimous recommendations contained in the report of the 1995 Special Senate Committee on Euthanasia and Assisted Suicide, entitled, "Of Life and Death." I would remind honourable senators and witnesses -- in particular, those who are watching via the television cameras -- that this committee is not reopening the debate on assisted suicide and euthanasia. It is dealing strictly with the areas of the report where the original committee made unanimous recommendations. I would ask everyone to bear this in mind as we proceed through these hearings.

Before us today we have two witnesses, Ms Virginia Jarvis and Dr. David Roy, from the Clinical Research Institute of Montreal. You are both very welcome here this morning. I would ask you to keep your opening statements to 15 minutes, at which point there will be a great number of questions. Please proceed.

Ms Virginia Jarvis, Clinical Research Institute of Montreal: Thank you very much for asking me to comment on the current practices concerning pain control and sedation. Before I start, I should like to make my perspective known, and that is of palliative care nursing at a large acute care teaching hospital. I have minimal contact with the community.

In terms of addressing the issues relating to the recommendations made by the Senate committee in 1995, I have not seen a great deal of change in pain control practices.

Overall, there remains a certain amount of ignorance in the treatment of pain, particularly in the terminally ill patient. There also continues to be a fear amongst physicians, nurses, pharmacists, patients and families that opioids cause death, and nothing could be further from the truth. We know that the greatest chance of opioids causing respiratory depression is with the first dose. Further, we are fortunate that, even if this were to occur, there is an antidote to this affect. It is a simple thing to reverse. Moreover, what we know about opioids is that they do not cause any sort of organ damage as do many other medications. Commonly used medications such as non-steroidal, anti-inflammatory drugs can cause irreversible damage to the kidneys and bleeding from the gastrointestinal tract, which can be very life-threatening. Many chemotherapy procedures, for example, can cause any number of life-threatening side effects. By comparison, opioids are much safer drugs.

Physicians and nurses also continue to fear causing addiction in their patients, and patients and family members fear that they or their family members will become addicted.

The mistake of our society is that so much attention is paid to the small percentage of our population who have problems of addiction. There are far more citizens of Canada who live with a cancer diagnosis and other painful conditions than those who suffer from addiction to opioids. For all the campaigns against aberrant drug behaviour, our society is denied the information that morphines and other opioids have a very valuable and legitimate medical use. This is, in part, the reason for the fear that lies behind the physician's reluctance to prescribing opioids for pain. Further, the emphasis seems to be placed on the number of milligrams the patient is receiving. That is completely irrelevant. What is of the utmost importance is the effect.

Opioids are a treatment for pain, just as antibiotics are a treatment for infection or chemotherapy is a treatment for cancer. As such, with the education of how to treat pain and the knowledge of the pharmacokinetics of the opioids, I do not think there is any reason for the first of the recommendations, namely, that the Criminal Code be amended to clarify the practice of providing treatments for the purpose of alleviating suffering that may shorten life.

My first point is that pain is a condition that requires medical treatment. Treatment for any condition requires educated evaluation of the risk/benefit ratio.

Concerning the second recommendation, namely, the establishment of a set of guidelines for the provision of treatment for the purpose of alleviating suffering, where that may shorten life, to my knowledge I do not know of any such guidelines that have been established.

Regarding the third recommendation, that of education and training with respect to pain control, I think that we have a very long way to go. I am reminded on a daily basis that what I take as being very basic knowledge of pain control with the use of standard medications clearly poses enormous problems for many health care practitioners.

An important part of my job is in teaching primary and advance aspects of pain control for nurses and physicians. As part of those sessions, I always ask: Who has taken a course in pain management? I have yet to see one hand raised. I have a 30-year history working in palliative care. I am finding an increasing, albeit small, number of nurses who have had somewhat more time allotted to pain management education in their basic training programs. However, overall, the knowledge base required for good pain control is lacking. Mostly, I find that nurses base their practice on overt experience rather than educational knowledge. I often find the rationale of practice equivalent to, "Such and such worked for Mrs. White, therefore it will work for Mr. Black." This is hardly evidence-based practice, and it is something that we should be very concerned about.

I am aware of the education initiatives for physicians in palliative care; however, there are very few courses for nurses to learn pain and symptom management and palliative care. Much of the education on pain control and pain management for physicians and nurses is left in the hands of drug companies. Moreover, there are no training programs for nurse consultants in the clinical application of symptom control and palliative care practices. Indeed, I have had to seek my own training outside of Canada.

Nurse consultants in palliative care should be the role models and educators for those working with the terminally ill. Experiential learning is only as good as the education that underpins it. If the experts are denied education, then how can we possibly increase symptom knowledge for nurses in the community or in the hospital? I will extend that to physicians because I have a great deal of working knowledge with the physicians and advise them on symptom management a great deal. No wonder nurses feel that they have brought about a patient's death because they have administered the last shot of morphine. The bottom line is: We cannot stop our patients from dying. They die from their disease, not the last shot of morphine that may have brought relief in the patient's last couple of hours of life.

In terms of sedation practices, I think there have been some changes, and for the better. In 1996, Dr. Chater, myself, Judi Paterson, who was a clinical nurse specialist in palliative care at the time, and Dr. Viola undertook a research project to determine the origins of the term "terminal sedation;" to obtain the opinions of world experts on sedation practices and whether or not those experts had sedated patients, what medications they used, how successful the treatments were and, most important, whether or not these experts supported euthanasia and assisted suicide.

The following is actually from the abstract of that research project. I believe it is a pivotal project. We sent a postal survey to 61 selected palliative care experts. There were 59 physicians and two nurses. Neither of those nurses was from Canada. We were seeking their response to a proposed definition of "terminal sedation," to estimate the frequency of this practice, the reasons for its use, to identify the drugs and dosages used, to determine the outcome, and to explore the decision-making process. Opinions on physician-assisted suicide and voluntary euthanasia were also sought. About 87 per cent of the experts responded from eight countries, although predominantly from Canada and the United Kingdom. Forty per cent agreed unequivocally with our proposed definition; 4 per cent disagreed. About 89 per cent reported using terminal sedation in the last 12 months -- and over half of these for up to four patients. Reasons for using these methods included various physical and psychological symptoms.

The most common drugs used were midazoiam and methotrimeprazine. Neither of these drugs are opioids, but rather anxiolytics, drugs that take away fear and suffering. They are indeed very comforting medications. Decision making involved the patient, the family and various aspects of the ease with which decisions were made. The use of sedation was perceived to be successful in 90 out of 100 patients. Ninety per cent of respondents did not support legalization of euthanasia, and I think that is a very important point.

In conclusion, sedation agents are used by palliative care experts as tools for the management of symptoms. The term "terminal sedation" should be abandoned and replaced with the phrase "sedation for intractable distress in the dying." I do not know why the Senate committee used the term "total sedation." I have no rationale for the use of that term.

We are all very busy, but it behooves us to hear the poignant story of why we decided to do that research project. It is a very personal experience of mine. I had the privilege of caring for a patient who had very extensive disease from renal cancer, a gentleman in his mid-50s. He had developed disease in his neck and his spine. He was seen by all the relevant experts and everyone agreed that this man should have surgery to stabilize his neck and relieve his excruciating pain.

The surgery was not curative but rather palliative. He was then to have radiation therapy. This is all very good medicine. The patient had surgery to have rods inserted into the vertebrae. Although his pain was difficult to control post-operatively, we had wonderful expert advice from the anaesthetist and we were well on the way to making him comfortable as he recovered.

Unfortunately, a short time after his surgery, the spinal rods became infected and the patient's pain rose accordingly. The doses of medications were increased appropriately, rotation of opioids was done as side effects from the morphine became problematic. In other words, all the right things were being done for this patient. The anaesthetic department was involved; palliative care and pastoral care was involved, but this man's pain continued to rise. We could not control it.

This patient was a big man and he had a big voice and he would cry out. The nursing staff were wonderful to him and the family. They did all they could to comfort him. They kept at the physicians: Is there nothing more we can do?

Eventually, the suffering extended to the nursing staff and the attending physicians. Some nurses could not handle looking after the patient because they were having nightmares. Some staff were selected to provide at least some continuity of care for this man. The patient continued to cry out and to call out. He would shout, and I can assure you this was very loud, "If I were a dog, you would shoot me. Help me. Please help me."

The discussion then arose around sedating this man to relieve his suffering. The decision was made that to administer sedation to relieve his suffering was tipping the balance of the slippery slope argument of euthanasia. As a consequence, this patient died screaming. He never did go into a coma. He died crying for God to help him.

The nurses who cared for him required some counselling, and it was offered but little was actually provided. It is something that, even some eight years later, causes distress to those who were involved, and I include the physicians, the chaplains and all those involved in this case.

I do not think this situation would happen today. I think all involved would be willing to sedate this patient. Often, we find that sedating a patient even for a short while can abort the spiral of pain that is a combination of physical pain, fear of increasing or recurring pain, and emotional suffering and spiritual distress.

In conclusion, I will repeat, sedating agents are used by palliative care experts as tools for the management of symptoms. The term "terminal sedation" should be abandoned and replaced with the phrase "sedation for intractable distress in the dying."

The Chairman: Thank you for your presentation.

Mr. David Roy, Clinical Research Institute of Montreal: Honourable senators, a brief consensus has emerged over the last 20 years with respect to withholding and withdrawing life-prolonging treatments. Several difficult situations can be identified in which these decisions must be made.

I will make a brief comment on the ethics of managing pain and anguish. I will also reflect on how we forget the past -- which should be to our chagrin -- and I refer here to the recommendations, which seem to be totally covered with dust, of the Law Reform Commission of Canada in 1983. That document should be dusted off and brought back in front of us.

My next point will deal with palliative care, palliative medicine education and research, which seems to be dwindling and dwindling. Where have all the flowers gone? Well, my question will be: Where have all the leaders gone? Or where will they come from?

Finally, I will comment on palliative care and palliative medicine in the home. Dying at home is not always pretty.

A consensus has emerged that, although saving lives always has been and will remain a primary goal of clinical practice, the initiation and continuation of intensive life-prolonging procedures may indeed result in little more than a stretching out of the dying curve or an extension of an unbearable and unrelentingly miserable life. Ms Jarvis gave a couple of examples.

Since the beginning of the 1970s, and particularly 1976 with the famous Quinlan case in the United States, patients, families, nurses, doctors and people from all walks of life have been asking whether an extension of life to the bitter biological end is the right thing to do, particularly when the sick and the dying find the physical, emotional and personal costs of such treatment to be hardly bearable. A trend has developed over two decades and its direction is away from an ethic of prolonging life at all costs, particularly costs the patient cannot bear, towards an ethic of emphasizing the quality of life and of dying over the duration of life taken as an absolute value.

The contemporary clinical-ethical consensus about withholding and discontinuing life-prolonging treatments emerges from the realization that treatments are a means and their use is not an end independent of the clinical goals that a patient accepts and that clinicians can achieve. It is these clinical goals that should govern decisions about initiating or discontinuing treatments, recalling all the while that these goals vary along the course of the disease. They also vary from patient to patient, even when patients have identical or very similar clinical conditions.

It is the nature of the patient's response to treatment plans that indicates the appropriate time to "down regulate" intensive, life-prolonging care and to "up regulate" palliative care. The shift is rarely abrupt, rarely of the on/off binary kind of change. Moreover, certain interventions, such as radiotherapy or surgery, may serve curative clinical goals for some patients and palliative goals for others. The treatments are not rigidly put in boxes. They can be used for quite different purposes, depending upon the evolution of the patient.

In a long continuum of evolving disease and correspondingly changing clinical goals, moments are reached when it is clinically, ethically and legally justifiable to withhold or to discontinue clinical treatments such as resuscitation procedures, respiratory support, dialysis, antibiotics, antiviral treatments, chemotherapy, surgery, and assisted hydration and nutrition. The discontinuance of this last-mentioned intervention is still very controversial.

Some people, including physicians, nurses and other health care professionals, may still be quite unaware of this trend and consensus, and others may think this direction is simply wrong. Moreover, some particular cases, perhaps even many, would inevitably provoke -- and a number of these cases always will -- agonizing decisions and discussions, intricate deliberations and difficult decisions, if for no other reason than that persons, both in their bodies and biographies, are simply too complex to be reduced to principles.

People who think that we can put the entire control of decision making in this utterly complex area into a few little principles that you then apply, or into a few articles of a piece of law that you then apply, are sadly mistaken. It is not that the principles are not required; it is not that the articles of law cannot be helpful. However, if we intend to micro-manage and micro-regulate decisions in this area, we will fail, as we should fail, in attempting to substitute articles of ethics or articles of law for clinical and personal and professional judgment. The difficulty, of course, is that when professional and clinical judgment is no longer adequately functioning, when clinical and personal and professional judgments are not properly educated, then we have problems. The tendency then is, "Give me a law, because the doctor's or the nurse's judgment is no longer working." That is not the approach to take.

You will always find individual professionals who make bad judgments. It is when you see a trend of bad judgments that absolutely major efforts will need to be made. Are we seeing trends of bad judgments? That is difficult to determine without extensive studies, and whether or not the extensive studies could ever uncover a trend in very bad judgments is another matter. However, when you have cases coming before the courts on a regular basis, when you have coroner's inquiries that must be mounted, and when you have families divided and torn against hospitals, then we had better start to look at whether or not medical and nursing education in the area of clinical ethics has somehow slovenly sloughed off and needs to be revivified and rejuvenated. I think it has to be revivified and rejuvenated because it is sloughing off down into the areas of a degree of neglect.

In the late 1970s and early to mid-1980s, centres for ethics started to arise in the universities in various areas. Clinical ethics courses, medical ethics and nursing ethics courses started to crop up all over the place. There was a passionate interest in getting doctors and nurses involved in the teaching of clinical ethics. We are starting to see now that the pioneers and the leaders that did this in the late 1970s and early and mid-1980s, even up into the 1990s, are all getting old. They are all approaching retirement. It is not so obvious that there are younger people coming up with the same passion, the same experience and the same skills to carry on these courses.

Paralleling the rise in centres for ethics was the rise of palliative care and palliative medicine here in Canada, or at least the beginning of the first centre that I started and directed in Montreal in 1976.We were just beginning to found and to stimulate palliative care in Canada. That gradually led to the establishment of a home care service. People came from all over the world to Montreal and then to Ottawa and then to other places in Canada to learn how to deliver palliative care and palliative medicine in hospices, in hospitals, and in the home.

The Royal Victoria McGill Palliative Care Service closed down the home care service in 1997. It does not exist any more. I have seen people in the home. These were not the poorest of the poor, by any means, but they were in rural areas. The patient was sent back home to die from the cancer, with bottles of oral morphine and a few rigid instructions as to how to administer it. I went to one of these farmhouses, and it was a disaster to see the family totally torn apart, not knowing what to do. When they followed the strict regulations, the pain was crushing, and they did not dare to give more. About a week later, they called me and said, "We want to give it all. We can't take it any more. We just can't take it, and she can't take it." I scrummed around and found a doctor who would travel the two-and-a-half hours there to take care of the woman, but she died before he could even get in the car and leave the next morning.

That is only an anecdote, but we can move across Canada and look at those who are being asked now more and more to die at home. The ambulatory care movement, or, as the French would say, the "virage ambulatoire", is great for those who can walk but not so great for those who cannot. This area will need to be studied. How do people die in the home?

Another area that I am starting to organize now, along with a group of various kinds of scientists, is how the poor die in Canada. We do not know how the poor die in Canada, and I am not so sure we want to know either. Knowing how the poor die in Canada would be an implicit, mandative responsibility that would work through the professions and up through the ministries of health and right up to the top politicians. I am not too sure we want that mandate of responsibility to become too publicly well-known. It will require hard decisions about where we should be putting our resources. Should we be putting our resources in the building of massive, mega-hospitals with the most high-tech equipment, involving millions of dollars, when we are neglecting the much more widespread need for community care and home care at a very primary, simple level? I am not saying it is an either/or thing, but there is a danger that we are going for the bigger and the high-tech that we are ignoring the massive suffering that is taking place on the ground level.

When patients refuse treatment, we seem to think that there are no problems. The patient is clear, conscious, lucid and stable in their will. However, when clear, conscious, stable patients, young and beautiful on top of that, refuse life-prolonging treatments, sometimes clinical staff who become bonded to them find it extremely difficult. The Nancy B. case in Quebec in 1990-91 is an example of that.

Another area is when burdens are not proportionate to benefits. I will not have time to go through a whole range of cases, but everything I am saying here, though it was written down, was written down on the basis of 23 years of working at the bed-side, particularly in intensive care units, neuro-trauma units, and severe burn units. Consider the case of an 84-year-old woman with advanced Parkinson's disease, advanced senile dementia of the Alzheimer's type, and pneumonia. Did treatment of that pneumonia with antibiotics involve burdens that were beyond benefits? We thought so in the early 1980s. She was deteriorating more and more with bed sores and had no consciousness whatsoever. There were no family members. There was a three-hour debate about what to do. During that debate, a young doctor said that we must deliver the antibiotics, treat the pneumonia. I said, "Really? Are we in a garage? The carburetor is not working, so we are going to fix the carburetor. There is no engine, no pistons, no battery, no tires, nothing left on the car, but we are going to fix the carburetor? We have to look at the entire patient. We are not here to treat a lung; we are here to treat the human being." In the context of looking at the totality of the patient, a decision was taken that it would be cruel to treat pneumonia after pneumonia after pneumonia, treat the biology and forget the person. She got worse and worse and worse. She was already beyond any ability to tell us anything.

When burdens are not proportionate to benefits, we cannot codify a series of little rules that will tell you exactly what to do in every case.

You must have very inspired and long experienced-based judgment. That does not mean that some decisions will not be mistakes, or will not be on the borders of the grey area of not knowing whether or not we did the right thing. That is part of the practice of care for severely ill people, of not always being certain that you have done the right thing.

When treatments are bound to fail, there are situations where you keep pumping blood into people who continue to bleed. It is like facet water going right down the drain, which you will not be able to reverse. However, you might be able to stabilize a person long enough for them to achieve his or her life goals, as was done for a man who kept coming back for his transfusions as his periods of remission got shorter and shorter. The nurses were screaming at the doctor for doing the transfusions, and the doctor replied, "I'm not forcing him to come back here. He is coming back on his own accord. He's got something he wants to say achieve." This man came back for the last time, with his suitcase and his wife, and he said, "Now I have come to die here. I don't want any more transfusions, just keep me comfortable." What did he do? He was building a porch around an old Quebec house, and he would not die before that porch was built.

The treatments here served the man's life plans. It was not an overly aggressive and unjustified prolongation of life by any means. The contrary, of course, can take place when we push when we should not, when being alive is no longer meaningful.

I have worked on a great number of cases of vegetative state, what is called "persistent vegetative state." We should never use that phrase, but it is used even in the medical literature, so I will. It is persistent or permanent states of unawareness and unconsciousness. It is not coma. Coma is deep sleep with no wake cycles. In persistent vegetative state, which becomes permanent after a period of observation, it has been recommended by the British Association of Physicians that a period of 9 to 10 months be used to observe a patient with severe neurological damage. If over a period of 9 to 10 months there are no signs of awakening and, in fact, there are signs of cerebral deterioration that can be neurologically assessed, then the persistent vegetative state becomes permanent vegetative state. It is at that time, if not earlier, when decisions should be broached about whether or not to continue hydrating and artificially feeding a person. Those decisions are extremely difficult.

I have been in two situations where the whole family, together with the physicians and the nurses, decided that the key question was not, "Are we justified in continuing after 10 months," but "Are we justified in continuing?" The burden was on those who wanted to continue, and no one wanted to continue. The parents, the husband, and the children all asked to stop the feeding, and the woman died within approximately three days.

A year later, I was in an institution where there are many such young people, with severe neurological trauma; indeed, all permanent vegetative states. The families come and their own family member, and then they visit with the other families; it is a big community of vegetative state patients and their families. At one point, one of the families raised the question as to whether or not their son should have continued artificial hydration and nutrition, and no one knew what should be done. Everyone was torn apart. I was asked by one of the doctors who knew me and the family to come to the institution to about this situation. Before I went to that appointment, rumours began, to the effect that this guy is coming, he will stop everything; he will kill this boy. I did not know this. I went in, we talked for a long time, and then I started to get feedback from the nurses and from the other people working there. We all came to the realization that we could not, in those circumstances, stop the assisted nutrition and hydration because in that context it would have been equivalent to exploding a bomb. The boy died of total system collapse six months later.

The entire situation must be taken into account when you make these decisions. This is emerging now under the program that we started approximately five to six years ago, developing what an "ethics for complexity" means. An ethics for complexity cannot be reduced to a couple of rules and a couple of principles.

There is one last area on which I will comment briefly. When anguish or pain are overwhelming, the important thing is that all the pain control and anguish control, the drugs, the dosages, the frequency, and the routes of administration that are used, should serve the fundamental goal of maintaining, if possible, a person's consciousness, with enough space so that they can think and talk and go through the things they want to go through. If you do not do that, pain totally reduces that space of mind, so that there is no liberty to think of anything except the pain and/or the accompanying symptoms, such as vomiting, excessive fatigue, et cetera. There are other people for whom the only peace they can achieve is by not maintaining consciousness.

Some people need to sleep before they die. By saying the word "sleep", I am not using a euphoric term for euthanasia. They need to sleep before they die. Some people can be reawakened and stay awake for a while, some cannot. That was the point about pain and anguish.

I will finish by offering one recommendation with respect to the Law Reform Commission of Canada. In 1983, the Law Reform Commission of Canada made five recommendations as to how the Criminal Code should be amended. Two of the recommendations had to do with not de-criminalizing or legalizing euthanasia, and not de-criminalizing and not legalizing assisted suicide.

The third, fourth and fifth recommendations are, briefly, the following: Nothing in sections 14, 45, 198, 199 and 229 of the Criminal Code of Canada should be interpreted as requiring a physician -- this is recommendation 3 -- to continue to administer or to undertake medical treatment against the expressed wishes of the person for whom such treatment is intended; recommendation 4, nothing in those sections shall be interpreted as requiring a physician to continue to administer or to undertake medical treatment when such treatment has become therapeutically useless in the circumstances and is not in the best interests of the person for whom it is intended; and recommendation 5, nothing in the same sections of the Criminal Code shall be interpreted as preventing a physician from undertaking or obliging him or her to cease administering appropriate palliative care intended to eliminate or to relieve the suffering of a person, for the sole reason that such care or measures are likely to shorten the life expectancy of the person, a likelihood that is extremely exaggerated in the lay mind.

William Kerr, writing in the New England Journal of Medicine, contrasted that with a 600-page volume put out by the United States and referred to the beauty and simplicity of this document. He closed his article by stating that "states in our country that have not yet established ethical legal standards in this field would do well to study and consider the wisdom applied to these difficult issues by the Law Reform Commission of Canada."

Provinces, or even the federal Government of Canada, if they have not yet established ethical legal standards in this field, would do well to study and consider the wisdom applied to these difficult issues by the Law Reform Commission of Canada. That is David Roy, not William Kerr.

These guidelines for amending the code give wide space for clinical judgment. That space is necessary. That space will not be filled with adequate clinical judgment unless we get moving and organize the courses and the research. You cannot teach for very long if you do not do research. The courses and the research are needed for palliative care, palliative medicine and clinical ethics of palliative care and palliative medicine. As a matter of fact, those courses with examinable material, by and large, do not exist.

The Chairman: I wish to begin the questioning because I think there is a bit of difference between the evidence of the two witnesses, and perhaps we can resolve that before we move on. Ms Jarvis, you indicated that you did not think there was any need for changes in the law. Let me say that the 1995 report was in response to the Law Reform Commission's report, in which they said there needed to be some changes in the law. Dr. Roy seems to think there do need to be some changes in the law. Can we balance those two in some way?

Ms Jarvis: There was a change in the law with regard to pain control. In some ways, Dr. Roy and I agree, in that we must always consider the risk-benefit ratio. I do not feel that pain medications shorten life. There is no need to amend the Criminal Code because pain medications do not shorten life. We know that with the first dosage there is considerable risk, but that situation could apply to anyone who was going in to have surgery. That does not fall under palliative care.

The other risk is with increasing opioids too rapidly, and the problem there is ignorance. My point is that we need to have well-educated people who are able to make good, clinical judgments. In palliative care, we do not accept the side effects of opioids as the norm. We do not accept that, because it is very unpleasant. Just increasing opioids can cause seizures or other types of unpleasantness for patients. We do not want that.

If we are getting to the edge of where we cannot control pain, and I think we are doing better by using different agents, then we need to look at sedation practices, with everybody involved. However, do we need a law to acknowledge that these things actually shorten life? I am not so sure. It does not matter how hard we try, patients will die and we must accept that.

The Chairman: Taking aside the phrase "shorten life" -- because Dr. Mount, by the way, has written to me in exactly the same way that you have expressed, that he does not like that phrase because he does not think it is applicable any longer. We also heard from Dr. Macdonald last week, who indicated that because of lack of training and lack of people with knowledge and expertise in the field, and pleading very hard for that knowledge and expertise, he is still of the view that the law needs to be changed because the vast majority of physicians who are doing end-of-life care are fearful of providing the drugs because of potential legal ramifications.

Mr. Roy: The sections of the Criminal Code, as they now stand, that were referred to by the Law Reform Commission could indeed be used against physicians, and they should be changed. They are totally outdated. That is not the question.

The key question is: In what way should the laws be changed? If the legislation is changed with draft bills that try to micromanage, those bills will cause more trouble and concern than if they simply left the articles the way they are now.

The way the Law Reform Commission had suggested amending those sections was with the paragraphs that I just quoted to you. Those paragraphs left things wide open. If you start detailing, there must be two witnesses. One witness must sign here, the other consultant will be called upon here. Legislation that details procedure will never address the infinite variety of situations that may arise.

That is why some of the drafts that have been put forward have caused more concern amongst the physicians who have seen them than the actual articles as they now stand.

There is another reason, though, that we should very carefully to consider how the Canadian Criminal Code should be amended in these matters; that is, that the consensus that I spoke to you about at the very beginning of my remarks is a consensus that is widely held throughout North America. There are indications that consensus is beginning to break down in the United States over the last several years. In 1997, a doctor from Kansas was sent to prison for 30 months because he gave pain control medication to an elderly woman who was in considerable pain because of cancer and because he disconnected respiratory support for an elderly man who was an advanced diabetic who had a massive stroke that left him totally incapacitated. In Canada, similar decisions, taken in a clinical context, with proper communication between treatment staff and family, would lead to no legal suit in any sense whatsoever.

The case we heard about from Montreal was due to very poor communication between family and staff with respect to the disconnecting of the respirator from the patient. That led to enormous emotional and other kinds of difficulties.

At present, there is a trend in the United States for doctors to limit the prescription of adequate pain control medication because they are frightened they will be sued. Spending 30 months in jail does not help one's practice. The movement now taking place is towards a system of rigidly regulated clinical and medical practice in these areas of palliative medicine and intensive care. We must not ignore that movement; it could influence Canadian procedures.

With all the educational programs that we have to organize, with all the investigation as to how home care should be properly organized and financed, we must not ignore the fact that the Criminal Code could breathe a cold chill down the backs of people working in these areas.

Senator Beaudoin: I was impressed by your two presentations; they were right on point. The objective of this committee is clear-cut. We wish to give effect to the points on which the committee members were unanimous in the 1995 report.

You appeared before the previous committee, Dr. Roy, and I remember everything you said. The difficulty for this committee is to put those unanimous points into law. One of the most difficult things in the world is to draft a perfect law.

The Criminal Code is an even more difficult situation because within that body of laws we must be precise. When we are precise, the risks are that the legislation will not be adequate after a certain time.

Dr. Roy, you referred to the Nancy B. case. I think that was a good decision. I do not have any problem with withholding of treatment or refusal of treatment or withdrawal of instruments. We all agree on that. However, the way to reflect the opinions of Nancy B. in our legislation worries me. You seem to have some doubt about the consequences of the Nancy B. case. I should like to know more about what you have in mind.

Mr. Roy: I have no doubts about the decision in that case. In my opinion, it was one of the best decisions we have had in Canadian jurisprudence. The only other decision that had the same power was the Stephen Dawson decision in the British Columbia Court of Appeal in the 1980s. In that case, the first court wanted to justify the parents' request that all treatment be withheld from Stephen, who had an infection from a shunt for hydrocephalus. The shunt had to be removed and cleaned and a new one put in. Of course, the boy would have died. The first court agreed with the parents that the patient's life was miserable. The second court got better testimony from the doctor, who knew Stephen personally. That court found that the descriptions of Stephen in the first case did not correspond to the real Stephen. The descriptions made his life so poor and miserable that reading that you would say, "Let him go." Those who knew Stephen, however, said, "No, he is not that bad."

I met Stephen about 14 years later, when I was working with another doctor who was looking at babies who had suffered as a result of their mothers taking drugs during pregnancy. He took me in to see Stephen, who was about 21 at the time. He was, of course, very mentally damaged. However, he was a very affectionate boy. He came up to me, threw his arms around my neck and hugged me. There were people who wanted to make everyone believe that his life was not worth living. He was watching television by himself that day.

Nancy B. was suffering from Guillain-Barré syndrome, which causes total paralysis. She could not do anything for herself. She could not wipe the rolling sweat off her brow in the hot summer. She requested through various signals that she wanted her respiratory support stopped. Her parents concurred. The hospital did not know what to do. The ethics committee was divided. Finally, the case went to the courts. Justice La Forest explained in his judgment that withdrawing respiratory support in this case would be neither homicide nor suicide. He clearly distinguished them and referred to the Law Reform Commission documents that I have just cited. He used them in great part as the basis for his judgment. I have no reservations with this judgment at all. In fact, it is a judgment that has set ethical precedent in the clinical world, at least in Quebec.

Senator Beaudoin: What is difficult is the equilibrium between what the medical experts are thinking and what the Criminal Code says. I agree with you, we should give a great deal to the medical experts. They should have some leeway. However, we have to put in place some parameters for the protection of everyone. Are you saying that the doubt should be in favour of the doctors and the nurses? Am I to conclude that the Criminal Code should not intervene too much, but be in place merely as a guardian, because the situation evolves from years to year? We are no longer in 1995. Perhaps we have come to some other conclusions. In other words, the whole debate is between those who say, "Leave it to the courts and to the doctors," and those who say, "Enact good legislation and try to find an equilibrium between what the law is saying and what the medical experts are thinking."

Mr. Roy: I am not a lawyer and I have no idea as to how to write legislation. How should we change it, and in what directions? Excuse me for citing this document again, something that I have used in teaching for almost 23 years. I have used it in clinical ethics courses across the country and in other countries. If someone told me I had but three minutes to answer the question, "In what direction should we go?", I would say, "Follow the direction in this document." They are extremely simple statements, but they contain very clear parameters. They do not suffocate families and professional staff when they have to make these decisions.

It involves not just doctors. There is a judicial model in which the decision will be taken by judges or a semi-official body such as an ethics committee. Then there is the family model, in which the family decides. Then there is the medical model, in which the doctors decide. Neither of those models is adequate. What in practice is evolving, and where it works the best, is when doctors and nurses, who see the patient most of the time, get together to work out these decisions. When that works, it works beautifully. It does not always work because families are frequently divided right down the middle. In some cases, you have to go to the courts -- and the courts are there for that.

If we could amend the law to take into account the committee's unanimous recommendations, as well as have an interpretive section that would state that, normally, these decisions should be taken by treating physicians and clinical staff, together with family, if the patient is unconscious, and that the courts are there when people cannot agree, we would be 95 per cent ahead of ourselves. If we try to micromanage a piece of legislation, it will simply not work.

Ms Jarvis: I would like to make one comment in relation to the phrase "to shorten life" and the differences between Drs. Macdonald and Mount. Not having enough education is not a good reason to change the Criminal Code, because you need knowledge to know how to administer these medications. If the education is not there, we will not be any better off.

I have been at this for many, many years. I can tell you that it is very difficult to give someone relief by using pain management medications. It has to be in the hands of the skilled or the end result will be a bigger mess.

Mr. Roy: It is not just a question of medication -- and I know Ms Jarvis will support me on this. A great deal of pain -- and I could give you a range of cases -- was fundamentally caused by unrelieved emotional distress. In one case, the doctors kept giving pain control medication in higher and higher dosages. The poor patient had been abandoned by her husband. She had lost her beauty; she had lost her hair. She was bloated with steroids. She knew she would not live very long. The doctor, who understood that, came to see her day after day. He brought her small gifts, and they started to become friends. Things started to get better, and in two weeks they were able to cut down the pain control. In three weeks, she got back on her feet. This story cannot stand for all stories. When we reduce pain control to giving drugs, we are making a terrific mistake. Who has the time today to go back to see a woman or a man every day for three weeks? Doctors are cut to the bone with long waiting lists.

You can see that we are talking about a complex problem. We can change a law; however, if we do not change all these other things, the paper on which the law is written will be just a beautiful piece of paper, one that will do nothing.

The Chairman: I want to clarify that I do not think you are in any conflict whatsoever with either Dr. Macdonald or Dr. Mount on this particular issue.

Senator Corbin: Mr. Roy, I do not care to question you on anything you have said. I am quite convinced about the common sense approach to your statements and practices. I do, however, want some clarification from Ms Jarvis. You made an allusion to drug companies and a comment about leaving it in their hands. Could you expand on that, please?

Ms Jarvis: What I am finding in my own clinical practice is that there is very little time given to pain management and pain control in the professional work environment. What I am finding, however, is that the drug companies are providing funding for symposia, or dinner meetings, at which we discuss medications and pain control. There is nothing in my job description that specifies that I should allot any of my time to education.

Mr. Roy: Ms Jarvis is correct. Drug companies have a bad name in many areas. There is the opinion out there that they give things, but at times there are really strings attached. In the area of medical research, look at the case of Dr. Olivieri in Toronto, which has turned out to be one of the worst debacles that we have had in years. The story is complex. In a good number of areas, without the drug companies we would have no education, period. In fact, we would have no seminars, symposiums or colloquiums. We would not have them, period.

If we are to get on a high horse with respect to drug-company-supported education but do not find a way ourselves to publicly that education within hospitals, clinics, long-term care units and medical schools, then we should stop criticizing the drug companies, because they are the only ones helping us in many areas to have those courses.

By and large, doctors and nurses are not stupid. They can sense when they are being pressured to push one drug over another. They are not little babies. I am not saying that that pressure is not an ethically important thing to watch out for, because it is. However, we are in a complex world. If someone asked me, "Would you prefer to have no education at all, if it cannot be funded publicly, as opposed to having education funded by drug companies with respect to palliative care and palliative medicine?" I would say, "Give me the education funded by the drug companies."

Ms Jarvis: That is exactly where we are right now. In nursing, for example, there is no money for education. We must approach the drug companies in order to go to conferences, or whatever. There is no money in the hospital purse for nursing education.

Mr. Roy: There are drug companies and then there are drug companies. There are some drug companies that have acquired the sense of societal and community mission. They are remarkable. There are also the others that can be discussed, but not here.

Senator Corbin: I wish to thank you very much for coming here this morning and making those statements. They are very useful and helpful.

Senator Milne: I am a newcomer to this committee. I am only here today, but I must tell you that your testimony before the committee this morning was most powerful and most compelling. I have concerns that arise out of it.

Dr. Roy asked: What is dying at home like? How do the poor die? Do we really want to know? Is anything being done? Are any studies being undertaken to follow through on the answers to those questions?

Mr. Roy: With respect to the question of how the poor die, about three years ago, when I was working with some street people in the area of HIV/AIDS, I came up with an idea to organize an action research program, where the research component would be simply to get enough information to know how to model the delivery of care in the home. I devised a four-page letter of intent for a very powerful foundation in Canada. They evaluated the letter of intent, and they invited me, with other key people, to come for a personal discussion about a month ago. They rarely ever do that, which is a positive sign. At the end of April, I must deliver to them a more developed letter of intent. I am hoping that they will provide start-up money to get the studies going in several of the major cities of Canada, including rural area areas, as to how the poor die. We want to know that.

We may be surprised. The poor may die much more peacefully than the middle class and the rich; we do not know. However, I do not think they do. When we know that, we will have a much more detailed idea of how we can mobilize people like Ms Jarvis, and others, across Canada to have palliative care programs that are deliverable.

It is not clear how to do that in poor, dysfunctional families. You cannot just knock on the door and say, "Do you need some help?" Dysfunctional families are something to see. Again, there is a wide spectrum of poverty and dysfunctionality. It becomes even worse in the area of dying, when the key people in the family are going. There is the start of a movement afoot.

The international poverty health network at the WHO recently sent out an editorial that they asked all editors of nursing and medical journals to publish. I published it in the Journal of Palliative Care, which I have edited for the last 16 years -- that is, since its beginning. We published a co-editorial on poverty, about how the poor die, and how we do not seem to have an international ethic with respect to global poverty, let alone poverty in our own countries. As the millennium changes, there seems to be the beginning of a change of social consciousness. The poverty literature is growing incredibly, not only in sociological terms but also in medical terms -- that is, in ethical, broad, social-global ethical terms.

You asked: Are things happening? I think that there are the beginnings of buds that may grow into powerful activities.

The Chairman: I think Ms Jarvis would like to make a comment here.

Senator Milne: I was just going to follow through on something Dr. Roy said, but please go ahead, Ms Jarvis.

Ms Jarvis: Regarding the aspects of the middle class and the poor, right here in Ottawa, in our institution, if patients do not have private insurance they cannot die at home. You must have private insurance to ensure 24-hour nursing coverage. Home care will provide up to 40 hours, which is one shift per day. There is a hidden cost in our society, in that our patients' family members often must give up their work in order to look after their loved ones at home. That is a cost that is never taken into account.

We then have the problem regarding the availability of drugs. We can often get drugs in the hospital, but when it is time for the patient to go home, their drugs are not covered by the ODB and our patients are paying out thousands of dollars a week if they choose to continue on that medication that is bringing them some relief.

Senator Milne: We all know which member of the family usually gives up a job to stay at home.

Dr. Roy, you spoke about this consensus towards treatment that has been developing over 20 years and how people are now backing away from it in the United States and in Canada. To try and keep this consensus going, why are there few younger people coming along to replace the aging population that you said were discovering the ethics courses and the consensual approaches? Why are there are no younger replacements for them?

Mr. Roy: I think there are younger people coming into ethics, but I am not too sure they are coming into ethics with the same motivation to get their hands dirty emotionally; that is to say, to get into the emotional fray that you were able to find in the early people in the United States, Canada, the U.K. and, to a certain extent, in Europe. The new generation seems to be more concerned about preparing high-brow publications.

In other words, there has been a shift to the academic level in the area of clinical, medical and bioethics research. We need the academic level, but at the clinical level, physicians and nurses must have free time for that from their professional practice -- for example, if you are to continue a professional practice in psychiatric nursing plus ethics of nursing, or if you are to be a physician working so many hours a week in intensive care and so many hours a week in clinical ethics. That model has not worked out very well, for economic reasons, for payment reasons.

Some physicians and nurses have gone for special training in clinical ethics but they are not many in number. Those who have no medical or nursing background whatsoever and who come into the area of clinical and medical ethics are of a rare breed if they have enough science background to be become familiar with the medical and the nursing world. Instead, they tend to move into the academic area. They discuss all the same matters that we are discussing today but from a highly philosophical and academic point of view.

There are a good number who have gone into the academic world of medical and clinical ethics, but we do not have too many on the ground who are involved in the actual clinical consultation work. Then again, it is not a recognized profession. For the hundreds of consultations that I have done over 20 years, never have I accepted one cent. I was supported because I ran a research laboratory in a clinical research institute and I could take the time to do that, but mine was a rare situation.

A bioethicist who is teaching at the university is seeing more and more students per class, as the number of professors is cut back. There are many papers to grade and it is very difficult for them to leave the hill and go across the city to do a consultation on the spot.

This is a complex question with no simple answer. We must come up with some innovative ways to attract young people into this area.

The Chairman: As you were speaking, I was thinking of Ms Jarvis at the same time; it all seems to be part of this whole dilemma, in the academic community, between "publish or perish" or "teaching versus research" or "practice versus research" or "bedside nursing versus administrative nursing."

How can we change that direction in nursing, for example? It seems to me that the palliative care nurse is all that is left of the so-called "bedside nurse." Now we take young nursing students and we give them four or five years of training at an academic institution. Then we tell them it is not really their job to do bedside nursing, that their job is to do administrative nursing. How can we change that direction? Should we be changing that direction?

Ms Jarvis: That is an important but very difficult question to answer. Nursing has changed over the years, as has our population in terms of longevity and so forth. In terms of palliative care, it is absolutely pivotal for our Canadian citizens to have nurses who are actually trained appropriately in palliative care. Working as a palliative care consultant, I require a great deal of knowledge. I would never get that at the basic level doing regular bedside nursing. I do not do bedside nursing, although I am at the bedside a lot and my family will tell you I am there far too long.

We must start with the universities. I sound like a broken record. I have been asking: Why can't we start a course to train people, like myself, in palliative care? Then we can train others. We can train the bedside nurses to have better skills and a better understanding of what they are doing. We are so mixed up with fancy titles and theories and so on. I think the essence of patient care is often lost at the higher levels of education in nursing.

Mr. Roy: We need to remember where we are temporally. We are at the end of the millennium and soon to enter a new one. Times have become excessively difficult over the last four to five years, given the side effects of the financial/economic globalization movement. Governments and health care systems worldwide have been affected by budgetary constraints and cuts. Bad judgments have been taken in a number of places, like the Province of Quebec, to give excessive early retirement to the doctors and nurses who were our most skilled. We lost thousands to the "Rochon-ization" of the system. Rochon was the minister at the time. He is not the only one to blame, but the results of that decision are horrific at the moment.

Nurses are burned out and over-burdened. In those contexts, the key words are "demoralization" and "demotivation". We cannot expect superb bedside care when new ideas are coming up that need to be organized but our people are demoralized, demotivated, burnt out, and struggling at home at the same time. Nothing is getting better; the situation is getting worse.

We will close thousands of beds across the country this summer as nurses and lab technicians go on holiday. Thousands of blood samples are lined up waiting to be tested. Patients wait four or five months for important tests and, in some cases, four to five months for radiological treatment. Some patients who are able to are going to the United States to be treated.

I know you have heard all of this, but some of your questions must be discussed in that context. That was not the context in 1990, and I hope it will not be the context three years from now, but that is the context now. Some of the responses to your questions will inevitably be pessimistic or negative or uncertain or doubtful, but there are many young and not-so-young leaders who are willing to get up and say that enough is enough. Maybe we need to publicly demand the resignation of the ministers of health. At some point, we must stand up on the barricades, and we are coming very close to that point.

Senator Beaudoin: Yes, you referred to the report of the Law Reform Commission. I have the greatest admiration for that commission. I knew many of the commission members, including the Chief Justice of Canada and Justice Jean-Louis Beaudoin.

Are those conclusions adequate even now? Some people have changed their views to a certain extent. I remember the Sue Rodriguez case, for example, dealing with assisted suicide, though that is not part of our concern here. Do you agree that that report from 1983 or 1984 is still valid, or should it be updated?

Mr. Roy: No, it is valid as it is. You may want to reflect and ask other people whether something should be added, but the five points there remain for me the guiding principles that we need today, exactly as they are. We should not change the two recommendations with respect to assisted suicide or euthanasia. The other three points cover exactly what we are discussing today, almost 20 years later.

Senator Beaudoin: That is the purpose of my question.

Mr. Roy: I would push them as they stand.

Senator Beaudoin: They seem to be quite right, in my opinion. The other day, we were told by some doctors that we should not legislate too much. Others say we should give effect to the five points in the law reform report. I do not have any problem with that.

However, you have answered my question; you have said very clearly that the report is still valid.

Senator Corbin: I think the word "conundrum" may apply to the struggle between the law and professional ethics. There is the general prescription that you should not kill; that applies to everyone, war being the exception, perhaps. I would not want to see the police, the legislator, the jury, the judges and perhaps the coroner at the bedside of dying people. In other words, I put my trust in professionalism, whether it is at the nursing level, at the medical level, or any other level within that general field.

You did touch upon the perhaps excessive temptation to legislate into every minute detail what is allowed and what is not allowed in terms of palliative care and the treatment of terminally ill persons. Would either of you have a parting comment above and beyond what you have already told us?

Mr. Roy: I will pick up on your word "policing". A number of years ago, the United States, in the famous Baby Doe case, set up what were called flying squads. The moment they would get a hot call, they would come flying in to check if babies were being adequately cared for in the intensive care units or if they were being allowed to die needlessly. It was a horrific, horrendous, only-the-Americans-can-do-it kind of mess, and it died out quickly. It was police at the bedside.

The only way we can maintain the Law Reform Commission's suggested non-criminalization of euthanasia and assisted suicide adequately is if we have enough sense to know when not to apply the law. Circumstances will bring us to the borders of conflict between ethics and law, circumstances where the administration of high doses of drugs will be very difficult to distinguish from euthanasia. As a famous Belgian jurist said, we should maintain the law against euthanasia, but we should know when not to apply that law or when not to apply it in all of its force. Unless we have a sensitivity for the kind of complexity that characterizes human life in these areas, we will blunder in either of several extremes. There are not just two. You put your finger on one of them, and I fully support you. I am not too worried about getting to the point where we have investigative squads and so-called ethics police at the bedside because it would not work very well and it would not last very long.

Ms Jarvis: I agree.

The Chairman: When I proposed in the Senate of Canada that we needed to do a review of our unanimous recommendations from the 1995 report, it was because I thought Canadians needed to hear again from witnesses like you. Thank you very much for your presentation this morning.

Honourable senators, the Minister of Health is not able to join us next Monday. He will be joining us at some time in the future, but we have to yet to set the time.

Our next meeting will be next Tuesday at 9:00 a.m. It will be an in camera meeting. We will, in fact, begin the draft. Even though we have not heard from the minister, I think it is important for us to establish the parameters of our draft report. You will be receiving materials in two separate communiqués. I have made it very clear that nothing is to go out until it is available in both official languages. One document will be ready tomorrow and will be distributed to your offices. The other document, unfortunately, will not be available until Monday, at which time it will be distributed to your offices. We will proceed with our draft on Tuesday, and you will have both sets of materials, I hope, by the close of business day on Monday.

Senator Corbin:I am a little worried if we get the French on Monday that we will have insufficient time before the meeting to go into it. How do you plan to proceed at that meeting?

The Chairman: The presentation that you will receive either later today or tomorrow will, in fact, be a draft outline of where I think we want our researchers to go. We may get, quite frankly, no further than that at our meeting on Tuesday. What you will be getting later is some background materials on recommendations that we may or may not make. I am not sure we will even get there by next Tuesday. We will keep the information flowing to you as quickly as we can, and we will make it flow in both official languages.

Senator Beaudoin: After we hear the Minister of Health, will there be any other witnesses?

The Chairman: We have finished and completed with the witnesses, other than for the Minister of Health. We can make adjustments to the text after his testimony, at the appropriate time.

The committee adjourned.