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

Issue 7 - Evidence

The Subcommittee to Update "Of Life and Death" of the Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:02 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 the seventh day of hearings under our mandate to update the unanimous recommendations of the Of Life and Death Report of the Special Senate Committee on Euthanasia and Assisted Suicide.

I would remind honourable senators and witnesses, and those who are following the committee on television, that this committee is not reopening the debate on assisted suicide or euthanasia. It is dealing strictly with the areas of the report where the committee made unanimous recommendations. I would ask that everyone bear that in mind as we proceed through these hearings.

We have two groups before us today. They are the Catholic Health Association of Canada and the Barreau du Québec. Welcome. I would remind each group that you have a maximum of 15 minutes to make you presentation. Please proceed.

[Translation]

Sister Annette Noël, Vice-President, Board of Directors, Catholic Health Association: The Catholic Health Association is a national Christian association supportive of health care in the tradition of the Roman Catholic Church. As the national voice for Catholic health care, we actively promote health in all its aspects: physical, emotional, spiritual and social. Our association encourages all activities designed to promote wellness, prevent disease and cure sickness.

Our membership comprises eight provincial associations, 34 owners of health care organizations, 127 hospitals and long-term care facilities and homes, health care professionals and affiliate organizations and individuals.

Many of CHAC's member hospitals and homes are actively involved end-of-life the care and offer palliative care services. The Association has articulated ethical norms for the care of dying persons. They are included in a health ethics guide published by the Association. We have bilingual versions of the chapter covering end-of-life care.

The Association appeared before the Special Senate Committee on Euthanasia and Assisted Suicide in 1994. We greatly appreciate the opportunity to appear before this Senate committee as part of an update on a topic that is very dear to us: life and death.

Advances in science and technology are dramatically improving our ability to cure illness, ease suffering and prolong life. That is wonderful. At the same time, these advances also raise new ethical questions concerning end-of-life care. In the face of such issues, the CHAC emphasizes the necessity of maintaining a balance between two important obligations.

We are obliged not to intentionally kill someone; as a result, assisted suicide and euthanasia are not acceptable options. At the same time, we are not obliged to use life-sustaining procedures which would impose burdens on individuals or families which are out of proportion with the benefits to be gained from such procedures.

Having raised these considerations, I will now give the floor to Dr. Latimer who will continue our remarks.

[English]

Dr. Elizabeth Latimer, Professor, Department of Family Medicine, McMaster University; Presenter, Catholic Health Association of Canada: At the outset, I should like to say that it is an honour to be here. I had the honour to testify before you in 1994 and it is a great honour on this day to be a presenter with the Catholic Health Association of Canada.

On behalf of the association and myself, we would like to congratulate you on revisiting these issues for an update. It has been very affirming for us that you have a continued interest in these issues and I would ask you to maintain that interest in future.

We have entitled our brief "The Luck of the Draw", which is a phrase that we have chosen to illustrate the very vital point that the care of dying people in Canada will depend, at the present time, to a very large degree on luck. We would like to illustrate for you what that luck might be.

You have the brief before you and, on page 5, I should like to begin by highlighting some of the issues in care for a woman named Mrs. J.H, who is 63 years old and has end-stage heart failure in Canada. I wish to highlight how Mrs. J.H. has "good luck" in her end-stage care.

I know you will have an opportunity to read this brief afterwards but, in essence, Mrs. J.H. begins by having a cardiologist, who is able to talk with her, who is able to order medications for her shortness of breath, her suffocation, her end-stage heart failure. The cardiologist helps her make decisions. The hospital in which she is receiving her care has staffed an interdisciplinary palliative care service and they are called to be involved in her care.

Mrs. J.H.'s luck continues to hold, in that her particular home care community has not suffered too badly under the downsizing of economics in health care in Canada, and they are also assigning a high priority to palliative care needs in their community. The result is that she has services available to her through home care. She also has a family doctor who has had some educational training in palliative care and has embraced a desire to care for her palliative care patients at home.

The community has also designed and funded an agency inter-institutional palliative program, which allows a variety of settings for care, so that Mrs. J.H. can be admitted to a unit for palliative care at end of life if her needs require that. You can see that, with home care support, a good family doctor, palliative care awareness all around and the funding of a palliative care team to go to the home to help her family doctor, she is indeed able to go home and is at home for three weeks with excellence in care.

When her shortness of breath, which in end-stage heart failure can approach suffocation, becomes more problematic, she becomes somewhat agitated and delirious and requires admission to a palliative care setting, which is able to happen for her because those arrangements and facilities are in place.

Over the page, on page 6, we can see that key components of the "luck of the draw" include the nature of her illness. At the present time in Canada, palliative care is usually associated with cancer. For the association, I have intentionally chosen a lady with end-stage heart failure so that we can reiterate that there are many people who need palliative end-of-life care who may not receive it because their diagnosis is not cancer. The lead physician on Mrs. J.H.'s primary attending health care team was a cardiologist; however, she had many doctors who embrace the palliative care philosophy.

I have already mentioned settings for care. A community requires these.

Where there is a palliative care program, there will be services for people. In the vast majority of communities in Canada where these do not exist, needed services will not be available.

Mrs. J.H. has doctors who are assuming her care and will care for her.

Again, there is an elaboration of those on page 7, including number 3, effective home care services and palliative care expertise to go to her home.

On page 8, there is a radically different scenario. If we were to take any of the five key components, which are listed on page 6, out of Mrs. J.H.'s care, the scene would be dramatically different, with ineffective symptom control and fractured care. For example, if she did not have aware physicians or an aware health care team, certain things would not be able to happen for her. If there was no in-patient facility for her to go to, she would need to return to an emergency room, suffer unrelieved symptoms, and possibly die in an emergency room, in a setting that would be opposite to her needs.

I should like to move now to page 9, where we list recommendations under six headings, beginning with care for patients and families, which we have placed as a number 1 issue in Canada. There are a number of points indicated, including the fact that 75 per cent of Canadians still die in institutions, and services there are grossly underfunded and grossly lacking.

Restructuring and downsizing of our health care delivery system across Canada has resulted in a downsizing of palliative care services also -- services that were never effectively funded in the first place. At the same time, downsizing has created a situation where surgeons and other hospital services would welcome alternate settings for care so that palliative patients might receive needed services in settings suited to their needs.

Coordinated programs are still quite rare. No province in Canada has a policy for palliative care with necessary funding, and partial palliative care, as indicated, may exist more frequently than is effective for patient care.

Our recommendations for action include policy development at the federal and provincial levels, with funding requisite to set in place the palliative care services that are necessary. We believe that palliative programs should be developed and should exist in every community, urban or rural, in Canada. We believe that the palliative care standards, as developed by the Canadian Palliative Care Association, should be embraced, and we wish to see them embraced at the level of health ministries, hospitals, community care, and long-term care settings.

We would also like to see these standards as mandatory for hospital accreditation in Canada. We would like to see the obstacles impeding good palliative care addressed. At every community and every organization, the obstacles will vary depending, but along with conjoint planning for a program each centre must identify its own obstacles to effective care.

I would now like to move to our second major set of recommendations, under the general heading of "education". Suffice it to say that the recommendations are in your brief and here on the overhead as well. As you have heard, there are 16 medical schools in Canada, one or two of whom have minimal palliative care education. The remainder do not. We would like to recommend that there be a level of education for all medical trainees as undergraduates, in residency training, and similarly in nursing and other professional groups. This is fundamental to moving ahead in end-of-life care in Canada.

We would also like major colleges for the professions, nationally and in the provinces, to identify a basic knowledge and educational standard, which all trainees must meet and which all practising physicians must meet in end-of-life palliative care.

Under the heading "research", we would draw your attention to the brief. It is sufficient to say that we support and recommend this, our belief being that it would flow out of effective, fully developed clinical programs. As well, funding bodies need support and encouragement to fund in this area.

Regarding advanced health directives, again, this is detailed in the brief. We would like to say that they are important. They are not a panacea for good care by any means; perhaps their major role is in encouraging families and sick people to begin to talk, even in informal dialogue, about their wishes at the end of life.

In the area of life-sustaining treatments, our emphasis here would be that decisions for cessation and non-initiation of therapies are being made in Canada on a daily basis. Decision making is an important and complex process. There are no simple, hasty solutions to guiding health care teams in this area. What is required is compassionate, effective, interpersonal communication. As such, we hearken back to the huge educational need in Canada for health care teams in all aspects of end-of-life palliative care. We believe that education and preparation would enhance the whole process of life-sustaining treatment issues.

The last topic is sedation practices. As we say in the brief, some patients require sedation at end-of-life care. Dr. Chater of Ottawa, who is referenced in our brief, suggests a change of title in this area to "sedation practices in end-of-life care for the treatment of symptoms." This wording would be a more appropriate approach. She has written a paper that we suggest may be important in this area.

Again, sedation practices come out of a good knowledge base and clinical practice in palliative symptom control. This brings us back to our emphasis on the need for professional health education. If people know how to provide symptom control and emotional support and if palliative care expert teams exist in hospital and in the community, which we are also recommending, then sedation practices will be ethical and will be carried out for the intended reasons -- that is, symptom control and a restful state for a sick person at the end of life.

Dr. Richard Haughian, President, Catholic Health Association of Canada: Honourable senators, in conclusion, the Catholic Health Association of Canada affirms the vision that was presented by the unanimous recommendations of the early report. It contains a vision of care of those who are dying, a vision that we strongly affirm.

Our brief is showing that some progress has been made towards those recommendations, but a lot still has to be done. We are strongly suggesting that palliative care not be looked upon as an add-on but as an integrated part of the health care delivery system. This, in fact, becomes a model not just for end-of-life care but for care throughout the whole system. I know we are not the first ones to say that, but we strongly emphasize that.

Lastly, we strongly believe that this fits in very much with the values of Canadians, that we are known for our humanitarian interest, for concern about those in need, and we should really be acting to reflect this as a national policy for those who are dying. We want to be known, really, in the international community for what we are doing to care for those who are dying.

The Catholic Health Association of Canada again thanks the Senate for this opportunity to present to you. We hope that your report will be strong. If there is any way in which we as an association can work with you in implementing recommendations we would be glad to do that.

[Translation]

Ms Suzanne Vadboncoeur, Director, Research and Legislation Division, Barreau du Québec: I am pleased to be here on behalf of the Barreau du Québec in response to your invitation to deal specifically with chapter 6 of the Senate report which deals with agreements and advance directives. I am accompanied on my left by Ms Edith Deleury, professor of family law and human rights law at Laval University, who is a member of several ethics committees. On my right is Mr. Jean-Pierre Ménard, who is a lawyer in private practice, a professor and a medical specialist.

We are here to discuss the current situation in Quebec as regards advance directives. I want to start by apologizing to people who are not legal experts: our presentation will perhaps seem a bit more technical than the Association's presentation was. I do hope, however, that we can word the presentation in a way that is understandable.

In Quebec, with respect to legislative or regulatory provisions, I will describe what guides citizens as well as medical teams in terms of care. Ms Deleury will tell you a little bit more about the mandate in case of inability, which is a Quebec creation that has existed for 10 years in the Civil Code, and Mr. Ménard will tell you about a very flexible vehicle that we have with the Civil Code in Quebec, one that is a little bit broader than the living will.

We will conclude with two recommendations. In Quebec, legislative provisions with respect to care are governed by the Canadian Charter of Rights and Freedoms which, in section 7, states that everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice, and by the Quebec Charter of Human Rights which states in section 1 that every human being has a right to life, and to personal security, inviolability and freedom. He also possesses juridical personality.

These fundamental values, these fundamental rights form the basis of the new Quebec Civil Code which has been in force since January 1, 1994. The philosophy of the Civil Code focusses on the autonomy of the person, the rights and respect of his integrity, of his inviolability. The entire chapter on consent to care in the Civil Code is based on these fundamental values from the charter. In sections 10 and 11, the Civil Code reiterates the content of the charters. It establishes guidelines and basic principles that govern all provisions regarding consent to care. I am going to read section 10.

Every person is inviolable and is entitled to the integrity of his person.

Except in cases provided for by law, no one may interfere with his person without his free and enlightened consent.

That is the basis of everything. Section 11 states:

No person may be made to undergo care of any nature, whether for examination, specimen taking, removal of tissue, treatment or any other act, except with his consent.

If the person concerned is incapable of giving or refusing his consent to care, a person authorized by law or by mandate given in anticipation of his incapacity may do so in his place.

You can truly see that that is the fundamental basis of all provisions of the Civil Code.

Sections 12 to 25 of the Civil Code address consent to care. Whether it is a situation of being capable or incapable, real consent or substituted consent, cases of emergency or non-urgent situations, for care required according to the state of health or not, etc., there are provisions to cover all of these situations.

As for specific pieces of legislation, I must point out some that cover the delivery of care in Quebec. The Act respecting health services and social services -- the Bible for doctors, nurses and hospitals -- also sets out guidelines that must be used to manage and deliver health care and social services.

Once again, it revolves around the patient, around his right to integrity and his right to be informed of the care he is receiving. There is also the Public Curator Act which applies, namely in all cases where the person does not have a legal representative. In that case, the Public Curator acts as a tutor or curator and must, in some cases, give his consent to the care that is being proposed for the person who is incapable of giving his own consent.

As for regulatory provisions governing care, there is the physicians' code of ethics. There are some sections that state that, once again, the physician must abstain from any action that is contrary to medical science data, and that he must only provide care or issue a prescription or prescribe treatment if medically necessary. Obviously, that is a criterion that must always be complied with when end-of-life care is being provided.

In the case of nurses, the code of ethics which must also be taken into consideration requires that nurses strive to establish a relationship of mutual trust with the patient, as well as respect the patient's values. We see here again that the desires expressed by the patient with respect to care or the interruption of treatment must normally be taken into account first and foremost.

That was a very quick overview of the legislative and regulatory provisions applicable in Quebec with respect to care, and I will now give the floor to Professor Edith Deleury so that she can tell you about the mandate in case of inability that is contained in the Quebec Civil Code.

Ms Edith Deleury, Professor, Laval University: I would like to thank you for the attention you are paying to the state of Quebec law in this area, and more specifically, in the area of advance directives. As Ms Vadboncoeur has already said, Quebec civil law has undergone a host of major reforms in recent years, and more specifically in the 1990s, when we reformed the safeguards for people who are incompetent and when we introduced the idea of a mandate in case of inability.

As its name indicates, the mandate in case of inability is a mandate, and it is part of the general provisions of legal acts governed by sections 21 and 30 of the Quebec Civil Code, from which it does however derogate with respect to specific provisions.

One of the features of the mandate, in the case of inability, is that it does not come into effect until the person has been found to be incapacitated. This mandate in case of inability allows us, when we are still fully lucid, to designate a person who, in the event of our becoming incapacitated, could take decisions on our behalf with respect to our treatment as a person and the administration of our property.

Under Quebec civil law, the mandate in case of inability is broader than the strict advanced directives for consent to care. This mandate in case of inability reflects, if you will, the spirit we referred to earlier and deals with respect for the autonomy of the person, which is the cornerstone for the Civil Code reform, and the basis for the previous reform of the rights of the legally incapacitated.

Of course this mandate must be approved before coming into effect. This approval presupposes that the person's incapacity has been verified. It enables a person to set out what care he wants to receive or not, to clearly outline it, and to place decision-making power in the hands of a third party.

So we are talking about a representative that the person designates himself, to whom he entrusts the responsibility of making decisions in accordance with his wishes as expressed. The mandate in case of inability is a document that has increased in use since 1990, and especially since 1994.

Here are some figures: in total, between 1990 -- when these provisions came into force -- and 1998, 7,904 mandates were approved. These are impressive figures that increase statistically on an annual basis. Another interesting fact to note is that on June 30, 1996, there were almost 400,000 notarized registered mandates, in other words, mandates that had not yet been approved. That is without counting the ones on the Bar's registration list and the mandates that have not been registered by one of the two chambers.

This mandate generally includes clauses covering the refusal of aggressive treatment and also what is referred to as a living will. However, as I pointed out earlier, the mandate can sometimes be limited to simply administering the person and sometimes to the simple administration of his property, in which case it can be completed with protective supervision.

The idea is to enable the person to equip himself with protective supervision that is strictly private. He determines his own protective supervision, which will entrust his mandatary with the responsibility, in accordance with the directives provided, of making decisions that will be taken regarding consent to care.

It is true that the mandate has its limits, and we have listed some of them in our brief. The first of these limits is that the mandate represents the will of the mandator at a specific point in time, in other words when the mandator drafted the mandate, whereas consent to care, as we know, is an on-going and evolving process by definition.

The sometimes vague nature of its wording can give rise to ambiguity and leave room for interpretation. There are in fact mandates that can be written in general terms. When someone says that he does not want extraordinary care to be administered to him, the word "extraordinary", as we know, gives rise to many discussions. There is a tendency to replace this terminology with "care that is not disproportionate with respect to the state of the person", which is much more accurate.

Nevertheless, the way the mandator drafts the mandate is extremely important with respect to the way that the mandatary will apply it. In this regard, perhaps a public education and information process should be put in place.

Since it is also a written document, it is an instrument that is less flexible than a verbal expression of one's wishes. Moreover, the health care team may be unaware of the existence of the mandate, the mandator or the mandatary as they may not always have the document at their fingertips, especially in the event of an emergency.

This document is also somewhat formal, since it must be approved. It is true that the legislator added some flexibility about two years ago, since it is now possible for a notary to proceed with the instruction and follow up the request for approval before the courts, but it is still the court that will make the decision as a last resort.

Moreover, contrary to provisions governing protective supervision of persons of full age who are unable to give consent which were put in place by the Quebec legislators in the 1990s, with this mandate, it is impossible to restrict the powers of the representative that have been designated by the person, based on the person's degree of incapacity.

The mandatary, once the mandate has been approved, has full powers with respect to treatment of the person, and moreover, based on the interpretation set out in section 21.35, paragraph 2 of the Civil Code, with the exception of specific provisions, he is entrusted with full authority over administration, even if the person is only partially incapacitated.

So it is impossible to make changes based on the degree of the person's incapacity. Whereas under protective supervision, such as tutorship or curatorship, respect for the residual autonomy is a factor that must be taken into account by the court that must decide whether or not to use protective supervision.

Finally, with respect to carrying out the mandate, there is no monitoring mechanism. The only possibility that exists is requesting that the mandate be revoked.

This instrument does have its limits, but as we have seen, it has made great strides since it was introduced in the Quebec Civil Code. It is complemented by provisions in section 12 with respect to substituted consent, to which it is linked and on which I will let Mr. Ménard continue.

Mr. Jean-Pierre Ménard, Barreau du Québec: We will start with section 12 of the Civil Code which is a mechanism for expressing one's wishes that is a bit broader than the mandate and much less formal, and which oddly enough, was overlooked in the 1995 report. When looking at chapter 6, under administrative directives, we realized that the report is silent on section 12 of the Civil Code which offers an approach that is much broader, less formal and easier to use than the mandate or the other mechanisms for expressing one's wills that have been discussed to date.

It is interesting to examine section 12, because in introducing this mechanism, the Quebec legislator decided to take a path that is considerably different from common law rules. Section 12 of the Quebec Civil Code is an original creation of Quebec civil law with respect to advanced directives. It is important to look at how it is different from the path chosen by common law to discuss these issues.

Our common law rules are strongly based on the evolution of American law in this area. Following a series of decisions by the U.S. Supreme Court in the Quinlan case, which challenged the State's interests in preserving life, in opposition to the wishes expressed by the person who was dying, the United States Supreme Court adopted the following approach: when a person has not issued directives or expressed his will with respect to his end-of-life conditions, the State must step in and the State must essentially act with a view to protecting and maintaining life. That is the philosophy of the role of the State with respect to maintaining life in a common law system; the same holds true for rules governing abortion and end-of-life decisions.

The State has a preponderant role to play in preserving and sustaining life. The Supreme Court has said that, where the patient has not given any instructions, the State has the duty to sustain life. And so, States have legislated to that effect. There are over 10,000 brain-dead patients in hospital in the United States who are on very costly life support without any real hope of improvement in their condition.

Almost all jurisdictions in the United States have established rules with respect to living wills. They have set conditions under which patients can express their end-of-life wishes. These conditions are generally quite prescriptive and subject to the existence of medical prognoses, as well as specific term and formats. The trend in many Canadian provinces is to pass similar legislation, or legislation modeled after these rules.

However, Quebec's Civil Code has an entirely different approach, which is much broader and which does not flow from the principles of American common law, but which essentially draws from the Civil Code philosophy with respect to personal autonomy. You will find this on page 7 of our brief. It says that a person who gives his consent to or refuses care for another person is bound to act in the sole interest of that person, taking into account, as far as possible, any wishes the latter may have expressed. That is a key element of section 12 of the Civil Code.

It goes on to say that if he gives his consent, he shall ensure that the care is beneficial notwithstanding the gravity and permanence of certain of its effects, that it is advisable in the circumstances and that the risks incurred are not disproportionate to the anticipated benefit.

How is this different from the legal framework that is to be found in the advanced directives? There are several differences. The wishes may be expressed at any time when a decision must be made, so that there is no rigidity. There is no time limit. It possible that the wishes could have been expressed 5, 10 or 15 years earlier. The issue is whether or not these wishes are still valid. There is no formal procedure as such. There is no need for the courts to be involved or to confirm the wishes. These can be expressed at any time. It is very flexible. A decision can be made today, just as it can be made tomorrow. The wishes can be expressed either orally or in writing. The individual can then change his or her mind very quickly in response to changing circumstances. This is then a very flexible vehicle which has a much broader scope than a mandate given in case of incompetency, which is one of the means by which a person can express his or her wishes, but it much broader than that. It very simple and easy to use.

However, its simplicity does limit what can be done. It can sometimes be difficult to prove that these are indeed the previously expressed wishes of the patient. The medical community tends to always seek a certain level of certainty or guarantee in assessing these decisions, especially when they are quite significant and far-reaching. Often, they will question the validity of the patient's wishes in the absence of any real evidence. That is perhaps one of the shortcomings of this mechanism.

The mechanism is much broader than the rules of common law with respect to living wills and other such vehicles. If what you are looking for in this debate -- and this is important for your committee -- is some standardization or interprovincial agreement on these things, the Barreau du Québec would say to you: do be careful. Given that the Civil Code rules are broader, more permissive, and more centered on personal autonomy than those of other provinces, the Barreau du Québec is rightly concerned that the scope of section 12 of the Civil Code might be decreased if the goal is to have standardized principles for all provinces at any cost.

It is important that principles found exclusively in the Civil Code can apply to any situation where a Quebecker under these regulations must make an end-of-life decision. The mechanism in section 12 is original and inspired by the Civil Code. It is somewhat different from, though there are some meeting points between the two, the thinking followed in common law. It is inspired purely by the Civil Code and it is important for the Barreau du Québec that its workings be clear in any type of intervention to be made concerning a person's last wishes.

[English]

Senator Beaudoin: I am very impressed by the testimony we have heard this morning. It is fascinating.

[Translation]

I asked this question to Dr. Lamontagne the other day. I asked him: Do you believe that we need to legislate or not?

I have listened to the common law and civil law experts this morning. Of course, there are many pieces of legislation in Quebec and in the other provinces.

If we leave aside the terms "euthanasia" and "assisted suicide", what we agree to unanimously in our report is that we must legislate in certain areas such as the unhooking of life-support machines, refusal of treatment and aggressive therapy.

I believe that we need to improve our Criminal Code. However, I would like to know what you think. Maybe you will tell me that the Civil Code is a extremely good document. I am sorry that we did not mention section 12. That was a mistake, but let us not forget that it came at the very end of the report in 1995.

Is this legislation enough? Should we legislate? I believe that we should do so, at least to amend the Criminal Code as the civil law seems very solid to me. Mr. Ménard emphasized the difference between the common law and the civil law: one is written and the other one is based on precedents.

Ms Deleury: The Barreau du Québec underlined in its brief that it seems timely to amend the Criminal Code as you suggested yourself in your report in 1995. I refer especially to page 34 of the report.

These amendments would clarify matters for practitioners and this might bring about a lowering of the current resistance as we still see defensive medicine.

Senator Beaudoin: Is your answer yes?

Ms Deleury: For my part, yes, and I believe that it is also the opinion of the Barreau du Québec. The Criminal Code needs to be clarified. The Law Reform Commission of Canada itself suggested it and there seemed to be some consensus about it.

As for the Civil Code, its provisions are sufficiently flexible and it is true that they are not perfect. They have been shown to have their limits, but I believe that they work well together and can be applied to most situations.

We find certain medical and hospital cultures in certain circles. People tend to be afraid of being sued, which can lead them to taking more aggressive action in the fear that palliative care might be considered a criminal action under the Criminal Code.

[English]

Dr. Latimer: I am a clinician. I have been in this field for 18 years. I do not think physicians on the clinical level are worried about legal liability for certain kinds of treatment. I come back to the issue of clinical services and education. If anything, the sorts of educational recommendations that we are making would mean that all health care team members would know about these things -- that is, cessation of treatment, advance directives, et cetera. If anything -- and, again, this is my impression -- I think the concept of people being over-treated is actually not true. Health care has moved along in such a way that if a person indicates that they want to cease treatment and, accordingly, have given a sense of that either to their families or via a directive, I believe that their health care teams and their doctors are quite willing to embrace that. In fact, it may be more difficult, as a result some of the recent downsizing of our health care delivery system, to get aggressive life-support treatment than to have treatment cease.

That may be a new idea for the committee. I do not know if you have heard that from anyone else. Cessation of treatment occurs when there is a wish on the part of the patient or family agreement -- that is, not a divisive situation. Where the clinical context is correct, I think many clinicians and doctors are opening to those sorts of directives, either verbal or written. However, the patient who wants to find life support beyond what a physician would find reasonable may have a more difficult time receiving that sort of care.

I do not know whether legislation is the answer. I believe education is the answer. We have proposed main stream educational recommendations that, as of next year, all medical schools should have palliative care and end-of-life care, including the legalities, in their curriculum. It would please me tremendously if that recommendation were made.

[Translation]

Mr. Ménard: There is a major difference between the legislation we have and how it is applied. We need to have rules to make society feel safer. The problem we now have is that even with the rules we do have, we find that there is quite a difference between the legislation as it is expressed and understood here and the way it is applied every day in night hospitals and long-term care facilities.

Even if we wanted to work on the legislation, we would need to provide education for society. The families, patients, medical practitioners and academics have to be informed about these rules.

These are not rules in the sense of clauses, but principles. Essentially, the law contains principles and these principles must be well known, because the implementation issues with these laws arise because people either ignore them, do not understand them or are afraid of these rules.

You can have all the legislation in the world, the problem is, if it is not understood, if it is not applied, and if it does not frame the whole decision-making process, then we will be back here in ten years' time discussing these principles and trying to understand why they were not applied.

I think that what Dr. Latimer underlined is very important. The issues are different depending on the care environment. It is true that more and more, the real concern of elderly and vulnerable people is not being over-treated, it is a concern of not being treated enough.

There is a growing problem, which legally, will create some major challenges in access to care and in access to some specific forms of care. In the health care sector there is a growing reluctance -- unfortunately -- to restrict access to certain levels of care on the basis of age, for example, and not on the basis of medical prognoses, which is quite different.

In an emergency, the first question that is asked is "How old are you?" This may determine treatment, in part, and this should never be accepted. Legislators need to send a clear message. Access to services must never be determined by age, care should really be determined by the medical prognosis of each individual.

This is a growing issue, even more so than the issue of suspending treatment. Whether or not decisions are being made for that person, it is access to certain forms of care that will extend their life. This issue is going to grow exponentially before long.

Senator Pépin: Doctor Latimer, you say that physicians do not seem to fear a backlash. However we have heard otherwise. It probably depends on the province. It has been said that some physicians or that some nurses fear a backlash if they provide the palliative care proposed. This is what we have been told, that even if the will is there, they are afraid of implementing it. Yet you say no?

[English]

Dr. Latimer: I do not have a sense that that is the case, no. I think there may be some confusion about how best to treat patients sometimes, and I believe that that is an educational need, an education need in terms of how much analgesic, what are the goals of care, how to help a sick person and their family make decisions at end of life for palliative care. There may be confusion around how to proceed with all that, but with the exception of complex situations, which do arise now and again in any institution, health care hospital or at home, such as a family divided, et cetera, or other kinds of issues, it is my sense that most physicians and health care team members wish to do the best for the patient. They need guidance, advice and some teaching in how to do that. They also need the presence of an interdisciplinary health palliative care team in their setting upon whom they can call.

In some of the more high-profile problematic cases we have seen in Canada, I am not sure whether those teams were available or were accessed to assist with care. However, I do not hear people saying that they are worried about repercussions if the process is followed, if there is good dialogue with the family, with the patient, if there is good symptom control, good documentation of what is done, the nature of the symptoms, why medications have been applied, and the results of that application.

Senator Pépin: The difference is between the process and how it is organized.

Dr. Latimer: Health care delivery systems are grossly inadequate in this way. It is as though, in educating undergraduate students, from that beginning, we do not acknowledge that 50 per cent of the people for whom doctors and nurses care will die. We do not acknowledge that and it is not taught. That proceeds right up to care. There is no preparation for the fact that you will meet dying people; how to look after them is not addressed. Student doctors in their final year have said to us, "I did not know that there would be so many dying people in hospitals." It upsets them. Our medical school provides more education in this area than others, and it is still grossly inadequate in our setting.

What we are proposing, therefore, is for mainstream educators and mainstream health care systems to embrace the need to prepare people in this area, as well funding it in hospitals and so on. Separate from that, I agree with what Mr. Ménard was saying about education. There is a large educational gap in what health care teams understand the law and good ethical practice to be. There is much confusion about that. I am not able to comment on whether we need more legislation because I am not a lawyer. In my opinion, more education, in terms of practice and law, would go a long way.

[Translation]

Senator Pépin: Thank you, Mr. Ménard, for your comment about how elderly people fear that they will not receive enough treatment and that age should not dictate the care that they receive. Some witnesses mentioned that even though they said and wrote down their last will, their directions were not respected. We were told that in some health care centres, patients gave their last will to the management of the centre and that it was not respected. Why were their directions not implemented? What can we do to ensure that they are? You hinted at an answer when you said that there was a lack of education and we have heard this a number of times since the beginning.

Mr. Ménard: When it comes to treating sick people, we still live in an old paternalistic culture. We do not view sick people as independent people. They are often reduced to their illness. It is like when a surgeon says: "This morning I am treating two spleens and three livers." You treat patients, not people. Legislation can only do so much in terms of changing these attitudes. Legislation reflects cultural values. In any law, the values and the choices of a culture are expressed. This is good, but we need to go further still. We need to educate ordinary people about these issues. We cannot just limit it to the medical environment, we need to empower people and inform them about their rights when it comes to their last wishes and how to implement them. We definitely have a long way to go before we bring an end to the vestiges of paternalism that permeate the entire health care system. Despite everything, the system is basically paternalistic. Legislation can only do so much to change this. I represent health care consumers. There are also victims of health care.

Senator Pépin: We also need to educate senior citizens.

Mr. Ménard: Yes, seniors have lived, for the most part of their lives, in a society where the doctor held the upper hand in the patient-doctor relationship. Long-term care patients find it very difficult to assert their will and their rights. People do not pay enough attention to what is happening.

Senator Pépin: When an emergency arises, they respond to the emergency, they were trained to provide care, they do no think to check if the patient has expressed the will not to be the object of extraordinary measures.

Mr. Ménard: This should be known in advance. The whole team should know the patient's wishes.

Senator Pépin: I am not lawyer but I have heard about section 12 of the Civil Code of Quebec. As you tried to explain it, there seems to be more openness or perhaps more lenience. If a Quebec patient is in another province and becomes seriously ill, would it be that province's law that would apply?

Mr. Ménard: Normally it is the law of the province of residence that applies. If a person in Quebec has expressed his verbal wishes to his loved ones, for example: if I am in a vegetative state, I do not want to be hooked up to a respirator, that is enough in Quebec. If that same person goes to Ontario and ends up in a vegetative state in Ontario, Ontario law requires a written directive to assert his wishes. Now, if the patient has no written directive in Ontario, what are they going to say: No, we will continue to use life support and continue to resuscitate every time there is a cardiac arrest, or should they follow the principle of the Quebec code where the family explains that there was a verbal communication whereby the patient made known his or her views to not be hooked up to a respirator for life support and should they respect those wishes? In the reconciliation that needs to be done, we are saying you need to be careful. Quebec law goes further. We would like these wishes to be respected when people are treated elsewhere.

[English]

The Chairman: Mr. Ménard, it is important to clarify just what the committee report said. The committee report did not recommend that we have a uniform advance directive across the country.

What we said is as follows -- and I am quoting:

The committee recommends:

...the provinces and territories establish a protocol to recognize advance directives executed in other provinces and territories.

Mr. Ménard: We understand properly what the committee has reported. Our concern is a wish to avoid, in the process of implementing this principle, any sort of compromise.

The Chairman: That was never the intention, nor do I think it would ever be the intention.

Mr. Ménard: We are quite comfortable with that.

There is one more thing regarding the last page of our brief.

[Translation]

On the last page of our recommendations, the committee comments quickly on non-voluntary euthanasia. The Bar asks you not to open this question of mercy killing, according to the recommendations of your committee in 1995. There is no need for legislation on this issue.

[English]

Senator Roche: I congratulate the Catholic Health Association of Canada on an excellent brief. I even hope that some of your language, particularly in the concluding section, would find its way into our report.

Dr. Haughian, as you know, this committee is dealing with unanimous recommendations from 1995. Those recommendations, to be brief about it, centre around palliative care. Your brief, of course, has been extremely helpful, as have others, in insisting that the bases of palliative care must be increased.

A number of the witnesses who have come forward, despite the admonitions of the Chair, have drawn us into the areas on which there is not unanimity. In other words, they have raised the whole question of euthanasia and assisted suicide.

It seems that if people want to talk about euthanasia and assisted suicide, we say "Go over there," because, over here, in this committee, we are talking about, essentially, palliative care. I am concerned about whether it is totally realistic to separate the two.

In your brief, principle 5, number 17, you state that the withholding and withdrawal of treatment should be recognized as just one part of palliative care. You and I know what that means, but I am concerned that the public may not understand the distinctions that are made between withdrawal of care on the one hand, which is legitimate, legal and moral, and a form of euthanasia on the other. It is my impression that the public does not have this sophisticated understanding.

Maybe I am wrong, but that is what I think. Of course, in this respect, I am very pleased to note your call for increased education, first of all of the physicians and student physicians, and the public generally.

I am wondering what advice you might have for us when we do this report as to whether we can concentrate on palliative without going into the areas in which palliative care allows people to die in comfort and dignity. Can we completely separate the extended questions of euthanasia from our desire to let people die in comfort and peace?

Dr. Haughian: Senator Roche, I will pass this to Dr. Latimer. We have discussed this and I think she would like to respond to it.

Dr. Latimer: It is a good question. Perhaps we cannot entirely separate them. People that we see as patients and families understand what palliative care is when we very simply tell them what the term means in terms of comfort care. I had one patient many years ago who said, "I have never heard the word, but it sounds like a `pal;' and do I ever need a pal."

I will never forget him because he taught me that that is what he needed -- a pal with expertise. You can quickly tell people what palliative care is. They understand that it is not acting with the intention to take life.

However, it would not hurt to have continued dialogue about the differences.

The thing we must say about euthanasia is that it means acting with the intention to take life by a lethal injection. That is what it is. It would be very helpful in this country if, when we are using that word, that is what we are talking about. Assisted suicide, we know what that is, too.

Lay people seem intuitively to be able to grasp, particularly if they are supportively cared for, what the goals are -- a state of calm, physical comfort, allowing nature to take its course, and assisting with symptom control.

My own view about focusing much on the euthanasia and assisted suicide issue is this -- and we have also talked about this in the association: If we had everything in place for quality end-of-life care in Canada, then that would be one thing. Right now, I find it almost immoral for us to talk about taking people's lives when we have not done the harder task, which is to have palliative services in place for people.

We use the title, "The Luck of the Draw." It really is that way. In any city, in any centre, in any town, what you get depends on the luck of the draw. You could die very badly in Canada. There are people dying very badly in Canada.

I really feel that an interpretation of palliative care as to what it is and what we are aiming for can be readily accepted by the public. In fact, something is beginning to happen where towns are now, more than ever, beginning to want to have their own hospices. Lay people are beginning to raise funds for hospices in Canada, which resembles, to some degree, the United Kingdom system. I think people know what palliative end-of-life care is.

Senator Roche: Should we explicate in the committee's report what it is that we are not talking about here, in order to make the distinction clear?

Dr. Latimer: Yes, you could emphasize, in words as plain as they can be, just what palliative aims to do, including symptom control, sedation when it is necessary for symptom control, and then a very brief sentence about what it is not.

Senator Roche: A brief sentence? I do not know.

Dr. Latimer: Perhaps a brief paragraph.

The Chairman: Senator Roche, I would like Dr. Latimer to comment on a statement you made. You talked about withdrawal of care and you put that together in a sentence with withdrawal of treatment. It seems to me that the two things are quite different. Continuation of care can co-exist with withdrawal of treatment.

Dr. Latimer, would you comment on that?

Dr. Latimer: Yes, I guess, suffice it to say, absolutely.

There was a physician in hospice care in the United Kingdom in 1982 who used to say that the question of whether or not to treat the patient is a false question. Granted, in those days a lot of the issues were framed around to treat or not to treat. The real question, he said, is this: How shall we treat the patient? His other question related to care: How shall we care for the patient? Asking those questions allowed him to talk about active palliative treatment, which is a combination of medical health care expertise and the psychosocial support of a whole person.

That reminds me to say that there is still one area that needs a fair bit of education amongst health care planners, and that is the false belief that palliative care is a passive, hand-holding, do-nothing kind of approach. Consequently, health care planners tend to think that it should be inexpensive and that volunteers can probably do it all. Volunteers are very helpful, but there is a great need for medical health care expertise in ministries, with hospital CEOs, health councils, and so on.

Dr. Haughian: In answer to your question, Senator Roche, the way we develop our briefs is a model we would suggest, even in terms of educating the public. The emphasis is on care of the dying person, but we clearly state the context. For example, on page 4, we clearly state that we are not talking about euthanasia and assisted suicide. That must be constantly repeated in whatever education we do and in your report.

Senator Roche: One of the unanimous recommendations of the committee was that government should establish a third category of murder, which would not carry a mandatory life sentence, and so on.

What is the position of the Catholic Health Association of Canada on that recommendation, which has been revisited by witnesses who have come before the committee? They have tossed it back here on the table again. Some think it is wise; some think it is unwise. Does the Catholic Health Association of Canada have a position on the establishment of a third category of murder for what is called compassionate homicide?

Dr. Haughian: Yes, the Catholic Health Association of Canada does have a position. If we go back to the brief that we presented earlier, we state quite clearly that we do not agree with that. It does not take seriously what "euthanasia" and "assisted suicide" really mean. It will demean the person who is the object of that type of act.

We are concerned about the disabled, the vulnerable, the handicapped, et cetera. Generally, we do have a position on it. We are against that type of compassionate suicide. We do not address it in this brief because it was our understanding that the issue was not under study by this committee. We outlined our position in our previous brief, and we confirm that again.

Senator Roche: I wish to make a slight correction. Because it was a unanimous recommendation, then we would be dealing with it, would we not?

The Chairman: We may or may not, depending on what the committee decides. Senator Corbin made it clear yesterday that, while it was unanimous on the day it was tabled, it was not unanimous three weeks later.

Senator Roche: Right. In any event, do I understand, Dr. Haughian, that in your first testimony, in 1994, you did deal with this question?

Dr. Haughian: We did deal with it and our position has stayed the same.

Senator Roche: I will go back and read it.

Senator Corbin: On that very point, it was unanimous in the report as tabled on June 6, 1995. As I said yesterday, I was unavoidably absent, having been sent on a mission outside the country. Therefore, I was not in a position to express my opposition to that clause. However, at debate stage in the Senate, following the tabling of the report, I did so. It may be unanimous in the text, but it certainly was not unanimous in spirit. That is another issue.

May I ask whether or not these written presentations this morning will be appended to the proceedings of the committee? I think they are excellent presentations, compared to others. I hate comparisons, but they are extremely well presented and they state the issues quite clearly.

The Chairman: As you know, Senator Corbin, it is not the custom to append any brief unless the committee recommends otherwise.

Senator Corbin: Yes, unless the committee indicates otherwise.

The Chairman: However, we would not be operating equally with all other presentations if we made exceptions. I concur that these were excellent presentations today. They will form a body of the documentation that will be held in the Library of Parliament.

Senator Corbin: But will the public who will be viewing our proceedings later on or reading our proceedings be able to request copies of these presentations, and will they be sent out?

The Chairman: Absolutely.

Senator Corbin: I have four questions, not comments.

First, I think it was Dr. Latimer who referred to the research issue, was it?

Dr. Latimer: Yes.

Senator Corbin: On page 11, you recommend that "research funding bodies (both government and private) be encouraged to support research in palliative care." Is there much private funding available at this stage with respect to that sort of initiative? How could we encourage private enterprise or individuals to donate more? I agree with you that area deserves extreme attention.

Dr. Latimer: There is not a lot of private funding available. As to encouraging more donations, I think the interpretation of palliative care into a mainstream agenda, both for society and for health care, would help.

As well, we had said in the brief that we would like to see palliative and end-of-life care on the main agenda in health care planning and, for society as well, these sorts of issues and familiarity. That translation to industry or other private groups would then occur, either individually or on a national basis.

Senator Corbin: But there does not seem to be a concerted interest in funding this sort of research.

Dr. Latimer: Not at the moment, no.

Senator Corbin: The drug companies could be doing more. They are all well off.

Dr. Latimer: Yes.

Senator Corbin: I am passing the message on publicly. First, of all people, they should be doing more.

Dr. Latimer: In some fairness to them, they do support a fair bit of education in palliative care in Canada, but they might have an interest in the research area. There is a group in the United States, the Robert Wood Foundation, which has a lot of holdings, and they are behind a huge physician education project in end-of-life care. That project is just beginning. That is one example of where a foundation might be drawn into funding.

Senator Corbin: Well, the message is out there, for what it is worth.

[Translation]

Sister Noël, I had a quick look at the code of ethics that you provided for us. There is so much in there that I have to ask myself how health care practitioners manage to make any sense of it all. I think that ethics standards are probably taught at university. Associations and institutions each have their own code of ethics. The religious factor figures into it, some take it into consideration and others do not. There must be some basic element when it comes to drafting codes of ethics. What has your experience been with respect to this? I am sure that you have had to deal with patients who have different opinions when it comes to life and death. How do you manage to reconcile all of these different perspectives? It cannot be done with one code of ethics.

Ms Noël: What colours my thoughts is my experience in health care in Catholic institutions. Fundamentally, ethics relate to life. People have a lot in common when it comes to the respect and dignity of life. It is rare that other religions run contrary to this respect.

[English]

Dr. Haughian: Senator Corbin, that is a very good question. In the process of producing this ethics guide, there was wide consultation not only among Catholics or Christians, but also feedback from medical associations and nursing associations was solicited. This guide is used widely in Catholic and Christian-based institutions, but we also find it is used outside of that context.

From a careful read of many of the articles that we have here, and the values on which they are based, you will discover that are not specifically Catholic. They have grown up within a Christian context, but they very much express many of the values and principles that are more and more accepted within the general medical and nursing community.

If we were to compare this to other codes of ethics, you would find more agreement than disagreement. Though different groups are developing different codes, there are many of areas of agreement. For example, our association sits down with the CMA, the CNA, and the CHA to draw together joint statements related to ethics and we have much agreement in terms of those principles. I believe that there is a place for individual codes, and you will find that there is much agreement on the basic principles underlying those.

[Translation]

Senator Corbin: A number of previous witnesses underlined this problem of the mandate over time. A mandate is drafted in 1990 or in 1994 and end-of-life decisions are being made in the year 2005. Does this mandate still apply? Medical and legal concepts evolve. What value or what importance should be ascribed to a mandate that is getting old and that has not been renewed with time?

Ms Deleury: That is an important question. The mandate contains the guidelines that have been conferred to a mandatary who will apply them because they represent the patient. Obviously, a mandate of this type will be entrusted to someone that you know very well and who in turn knows you very well and who will, in theory, be able to adapt his or her response or attitude according to your personality. Indeed, things do evolve very quickly.

You brought up the issue of information and of the exchange that needs to take place when drafting the mandate. The current trend is to use prepared forms. People do not take the time to discuss it, to think about it. When we talk about education, it seems to me that we must provide more information and we must promote more discussion between the mandator and the mandatary. People need to learn more about the nature of treatments in different circumstances in order to ensure that the decisions made by the mandatary reflect the true wishes of the mandator. Here, the issue of information and education becomes essential.

There may be a trend to use pressure -- in the current context where there are large numbers of seniors who are entering these long-term care centres -- to ask the people entering these institutions to sign a mandate a bit too quickly.

However, there are long-term care centres that are holding information sessions, which allow for the exchange of information which will lead to the signing of a mandate. Once again, it is an issue of culture and information.

Mr. Ménard: In any case, section 12 allows a person to express different wishes later. It is flexible and even if it is not written, there is no problem. The idea is to know the wishes of the person and not the form used to express these wishes. Even if a mandate was given in 1995, and the treatment is being given in the year 2005, if the person said in 2005 that they wanted something different, then the mandate is ignored. It is the most recent wishes that override and as soon as the person indicates they have changed their mind, then that is what is respected.

Ms Vadboncoeur: We need to emphasize -- and this comes back to the need for education -- the confidence that must exist between the mandator and the mandatary. This link is extremely important. The mandatary must be able to know, or even guess if need be, not only the needs, but also the comfort wishes of the person that they represent. We need to educate people to urge them to entrust this mandate to someone in whom they have complete confidence in order to avoid, 15 years later, any disagreements.

[English]

Senator Corbin: I wish to address this question to the other group, perhaps Dr. Latimer or whoever wishes to respond.

On page 9 of your brief, under "Care for Patients and Families," you raise a familiar theme. You talk about the effects of restructuring and downsizing health services across Canada affecting palliative care. That is a passing phenomenon, if I may suggest. I hope it does improve. I do not downgrade the serious concern you have in this respect.

More fundamentally, do governments across Canada have serious palliative care policies or not?

Dr. Latimer: We have a recommendation about that in the brief, that they must be developed. No, to my knowledge there is not a province that has a serious palliative care policy. Some provinces, like Ontario and others, are funding some education initiatives that are very helpful for practising health care professionals. They are not large initiatives, but they do exist. When it comes to policy for patient services, where one could say, "In X province every person in this situation will be able to receive, if it be their choice, the following range of services and we will fund those services," that has not happened.

I should mention a word about funding because it is important and we were talking last evening about the cost of a palliative care consultation team in a hospital.

It is my belief that, yes, it costs money, but the cost is so infinitesimal compared to the global budgets of hospitals at the present time that we cannot easily accept that money could not be found. Recognizing that there are problems with money, it is a question of shifting some priorities.

If we were to see a consultation/collaborative care team in every hospital in Canada as a beginning step, with some outreach function into the community, that would go a long way to getting things under way, also coupled with education of all professionals and practising physicians.

Senator Corbin: Dr. Ayoub appeared before this committee yesterday but left before we could question him. He insisted, as have other witnesses in the past and during the current exercise, on the continuum of care. How many governments have bought into that concept of continuum of care? This is what palliative care is all about, whether you live in big cities, in private or in public institutions, regardless. I have the impression that we do not have that continuum of care.

Dr. Latimer: No, we do not.

Senator Corbin: Governments have not focused on it.

Dr. Latimer: Also, communities have not been charged with examining that continuum. We have in the appendix of our brief, a document -- I was involved with the OMA -- that talks about programs for palliative care. It suggests a continuum, a seamless system of care, in which a patient can fairly readily move amongst all the settings that he or she may require. Like Mrs. J.H. in our submission today, a patient should be able to move from hospital to home and to an in-patient palliative setting.

We could count on the fingers of one hand how many of those systems exist in Canada. With funding and coordinated planning, communities could perhaps develop the systems at their own level, but there needs to be a mandate from above that this must be developed.

Similar to education, the medical schools, I feel confident, could fairly quickly move to education if, in some very nice way, they were told that they had to do it.

The Chairman: We will do our best, Dr. Latimer.

Dr. Latimer: You have to be nice and firm.

Senator Corbin: I am not a partisan person, so do not attach that notion to what I am about to say, but Premier Harris of Ontario, more and more often, is making pronouncements and dictating how certain things should be done in schools with respect to teachers, programs, pupils. It happened again yesterday or the day before.

I never hear any comments from above from anybody, regardless of political colour, concerning palliative care, that one ought to do this and one ought not to do that. What is wrong? We are dealing with young people and, in many cases, middle-aged people but mostly with senior citizens who have given their lives to building this country, yet we seem to neglect them, to forget them. That is the crying shame of the lack of governmental policies in this era.

Dr. Latimer: One thing you might want to consider is using the phrase "palliative end-of-life care." Some people in acute care hospitals and other settings -- and maybe the premier himself -- may think that palliative care is something that is done "over there," done by nice people, but over there and so therefore not important. Moving it to centre stage might be assisted by combining an "end of life" phrase with palliative care.

Senator Keon: Ms Deleury, you described an extensive experience with advance directives in your province. I have had limited experience with them in my professional life as a heart surgeon. When I have seen conflicts between designated responsible people and the health care team, it has usually occurred when the palliative care experts had not been involved early enough, or in a rather acute situation where there had not been time to involve the palliative care experts.

In your extensive experience, have you been able to see the incidents of conflict between the designated responsible person and the health care team and whether there was a correlation between those incidents and the involvement of professional palliative care?

[Translation]

Ms Deleury: The conflicts which you refer to can, and indeed do, occur. However we have to acknowledge that patients today are much more assertive with respect to their rights. My colleague Jean-Pierre Ménard mentioned that there was a certain resistance, given the hospital culture particularly, that we need to consider. Nonetheless, in the case of a conflict between the medical professionals and the mandatary, the mandatary can assert that if the wishes of the patient are not respected, legal action may be taken. It remains a clash between the very powerful and the very weak. Sometimes, some of them are less demanding than they would like to be, given the somewhat imposing structure that they have to deal with, thus the gap that we were talking about earlier between the legal statutes, the standards and the practices.

One must however acknowledge that there have been some changes in the past 10 years. My colleague Mr. Ménard could speak at length on those changes that occurred in hospital culture.

Mr. Ménard: It is important to know that the decision-making authority of the designated representative, the mandatory is specifically defined in Quebec law. In other words, the mandatory cannot make any decision he wants. He has to act in the interests of the person he represents, taking into account that person's will and making sure that the care is beneficial and appropriate, and that the risks are not out of proportion with the benefits. The law provides that if the health care team does not act in the interest of the person, according to the mandatary, the representative can bring the case before the courts. In Quebec, it is done quite regularly under the new legislation. The new section 16 of the Civil Code provides that the mandatary may get the merits of the decision tested. The courts make a determination, taking that section 12 into account. The rules are set out in detail, there are mechanisms to manage such a conflict. It is managed legally, but not humanely. The first way to manage that kind of conflict is through communication between patient and doctor. Conflicts arise almost always because of communication problems, inadequate information and positions that are overly authoritarian. The patient is not given the time needed to understand and accept those decisions.

In Quebec legislation, there are extremely speedy and efficient mechanisms to resolve such conflicts. Problems of that nature do arise.

Ms Deleury: Concerning the data that might be available about such conflict resolution, my colleague just refereed to section 16 of the Civil Code. That section allows the use of court proceedings in the case when an institution feels that the mandatary is not acting in the best interest of the incapable person and does not seem to carry out that person's will. Under the present legal framework, there have not been many court cases dealing with the rights and powers of the mandatary.

[English]

The Chairman: I have a question regarding the ever-increasing cost of drugs. As we move to more in-home care and to more in-home palliative care and hospices, and so on, will there be a problem? Once outside the hospital setting, in most provinces -- not in the province of Quebec -- drugs are no longer covered by the health care system. Will that be a problem?

Dr. Latimer: That is a good question. Many of the medications that we order outside hospital in Ontario are covered, particularly for people over the age of 65. There is private insurance coverage also for those under 65, from employee drug care plans, et cetera. However, there is a group of people who have no extra coverage.

Some of the medications are very costly. Some of the opiate-analgesic preparations for pain control are costly, so there will be an issue there. There is already an issue there in Ontario. I am not sure about other provinces, but I think they have the same issue.

The other issue that we know about in Ontario concerns the criteria for ordering certain palliative care medications. A group of physicians in Ontario are about to join together to lobby to have a palliative care formulary of medications that would be freely available for palliative care situations, defining "palliative care" as broadly and as flexibly as we can so that people will have access to the medications they need.

To answer your question, yes, there will be some cost issues and there are some obstacles to ordering some of the medications at the present time.

The Chairman: I made that comment because I read a study in the past week that would indicate that if you earn less than $25,000 a year in this country then you are probably 75 per cent less likely to have a private pharmacare program. On the other hand, if you earn over $100,000, you are likely to have 100 per cent coverage. There is a gap here.

I want to thank all of you very much for participating in today's forum. All the senators think your presentations were extremely critical and important.

[Translation]

Ms Vadboncoeur: When we were asked very recently to take part in this meeting, we were told to limit our comments to chapter 6 which deals with advance directives or agreements, therefore issues that have more to do with civil law. That is the reason why I brought with me experts in the field. I see that our mandate is to study all the recommendations contained in the unanimous 1995 report. The Barreau du Québec is used to making comments on Quebec legislation or federal government legislation. We could study the other recommendations and send you a report because I feel that your hearings will be over by then. I do not know whether this offer is of interest to you. It will depend on your deadlines.

[English]

The Chairman: We would be delighted to hear any additional comments that you have. We are trying to table the report on June 6, which would be exactly five years from the date of the original report. We think that is symbolic. It is clear that we believe not nearly enough has been done, and that will be clearly reflected in the report. That is what we want to do. It is a report card to tweak some people into doing a little more.

[Translation]

Senator Corbin: You would have to send us your comments on the other recommendations by mid-April.

[English]

The Chairman: I think we can deal with them until the first week in May.

[Translation]

Senator Beaudoin: I would like to get some comments on the jurisprudence and on a few sections of the Criminal Code dealing with refusal of treatment. We often conclude too quickly that there is no need for legislation. I believe there is always a need for legislation. We have a lot of laws that are not excellent, but we will never have too many excellent laws. I would be very grateful if you could do it by June, it would be very useful to us.

[English]

The Chairman: Thank you very much.

The committee adjourned.