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

Issue 3 - Evidence

The Subcommittee to Update "Of Life and Death" of the Standing Senate Committee on Social Affairs, Science and Technology met this day at 9:08 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 third day of hearings under our mandate to update the unanimous recommendations of the 1995 Special Senate Committee Report on Euthanasia and Assisted Suicide entitled "Of Life and Death." I remind honourable senators and, most particularly, the witnesses that this committee is not reopening the debate on assisted suicide and euthanasia. It is dealing strictly with the areas of the report in which the original committee made unanimous recommendations. I ask everyone to bear this in mind as we proceed.

Today we have five witnesses who have been invited to address us on the issue of palliative care: Dr. Michel Brazeau, who is accompanied by Dr. Henry Dinsdale, Dr. Gordon Crelinsten, Sharon Shlozberg-Gray, Jeff Poston and Ms Sharon Nield.

Dr. Michel Brazeau, Chief Executive Officer, Royal College of Physicians and Surgeons: Madam Chair, thank you for your invitation. I am a medical microbiologist and infectious disease physician and chief executive officer of the Royal College of Physicians and Surgeons of Canada. I am not an expert in medical ethics. I am accompanied, however, by Dr. Henry Dinsdale, former president and executive director of the Royal College of Physicians and Surgeons of Canada, and former president of the National Council on Ethics in Human Research. I consider him to be very much an expert on the question of ethics. He is here to assist me in responding to your questions.

I intend first to speak briefly about the Royal College; I do not miss an opportunity to do so. I will then go on to some general statements on the issues before us and then pursue, with some specific comments, the chapters from the previous recommendations.

The Royal College of Physicians and Surgeons of Canada is an organization of 32,000 medical specialists dedicated to ensuring the highest standards and quality of health care. The Royal College accredits the residency training programs in all 16 faculties of medicine in Canada. The college also grants certificates in 53 specialties and subspecialties and two special programs, including one in palliative medicine.

I will immediately point out that I have provided notes from my presentation, documents about the Royal College, and also documents published by the college since 1995 on the issues before you. There are also a number of excerpts from our annals from fall 1999 that deal specifically with bioethics for clinicians.

Recently the Royal College has become much more involved in the organization and delivery of health care services. The college recognizes that it cannot set the standards for the training of medical specialists without becoming intimately involved in defining and determining the environment in which they practise. We at the Royal College are convinced that we are in a period of in-depth renewal of the health care system in Canada, which will take some years. We are not simply repairing the system.

To become and remain fellows of the Royal College, our certificants must maintain their professional development, publicly demonstrated, and pledge to uphold the highest standards of professional behaviour. The payment of annual dues by our members and the remarkable volunteer contributions of over 1,500 of them, up to 40 days per year, allow the college to fulfil its mission, which is largely educational.

As many other such colleges are finding throughout the world, this is a time when we must re-engage in a fundamental aspect of our role -- ethics as an important part of professional behaviour.

The Royal College has adopted the code of ethics of our colleagues at the Canadian Medical Association. These guidelines spell out the rules and principles applicable to each of our members in his or her professional activity. However, our biomedical ethics committee and administrators of the college are now studying emerging ethical issues that include the collective responsibilities of physicians, the public, and governments in the social contract that binds us all. The organization of Canadian health care services lends itself to the study of this particular topic.

Is there any need to remind ourselves of the change in our perceptions from 1990 to 2000? In 1990, the focus was on the oversupply of physicians and nurses and the over-utilization of the system. Today, it has shifted to shortages of physicians and nurses and the potential under-utilization of health care services caused by reduced access -- both major concerns for the public.

Since 1996, the Royal College has clearly distinguished between the general competencies of the medical specialist and those that are specific to each specialty. Our CanMEDS 2000 project defines the core competencies for Canadian specialty physicians as those of medical expert, communicator, collaborator, manager, health advocate, scholar, and professional. It is the development of the latter role that enables medical specialists to manage the ethical dilemmas that confront physicians on a day-to-day basis. Specialty-specific educational objectives will provide medical specialists with the competencies needed, for example, to optimize their recourse to the available arsenal of modern therapeutics to manage pain.

As a last general comment, the Royal College strongly suggests that the Canadian Institutes of Health Research be involved as a fundamental resource in dealing with many of the issues.

We now review some of the chapters containing recommendations from June 1995.

First, we thank you for the opportunity to draw to your attention the new, one-year program of added competence in palliative care that is accredited jointly by the College of Family Physicians of Canada and the Royal College of Physicians and Surgeons of Canada. The accreditation standards of these programs are appended to your documents. Four programs have already been approved by the Royal College at the universities of Alberta, Manitoba, McGill, and Laval. Requests from McMaster, Ottawa, and Montreal universities are presently under review.

Unfortunately, training programs in palliative medicine have not been adequately funded until now. Also the infrastructure and the means to provide adequate palliative care, to ensure enough health professionals are trained, to inform the public, and to conduct much-needed research are severely lacking. The needs of an ageing population for palliative care are constantly increasing. The incidence of cancer is rising and many other circumstances warrant increased access to palliative care services. The time period during which palliative care services are provided to individual patients must be extended. It is not enough to provide this type of care only at the moment of death.

I should like to take this opportunity to give you some appreciation of the perceptions of some of our members on palliative care and the current situation. I should like to quote first from Dr. John Seely, on the recommendation that governments make palliative care programs a top priority in the restructuring of the health care system.

Absolutely nothing has been done to address this at the Federal or Provincial level. As far as I know, there is no national strategy on palliative or end-of-life care, nor has there been any attempt in any of the provinces to make palliative care programs a top priority.

It is perhaps worth adding that the needs for palliative/end-of-life care are likely to increase substantially in the coming years as a result of a number of factors: increasing number of elderly persons (both in absolute numbers and as a proportion of the population), increasing prevalence of cancer and increasing application of palliative care to non-cancer patients (e.g.patients with end stage organ failure, ALS, AIDS, and patients who decide to discontinue dialysis), while every study that I am aware of has documented significant unmet needs for simple pain and symptom control in terminally ill patients in acute-care institutions, long term/chronic care institutions or ambulatory settings, in addition to unaddressed psychosocial, emotional and spiritual needs.

Modern palliative care services were established in Great Britain in 1967. Many of our eminent Canadian specialists have commented that our American colleagues have more than made up for their early delays and are a shining example of what can be accomplished with determination and appropriate means. Let us follow in their footsteps.

Adequate access to quality palliative care services would have a positive impact on several of the other issues in the Senate subcommittee's report. We believe the five recommendations drafted in 1995 on palliative medicine are still very valid and more than ever applicable.

Chapter 4 concerns pain control and sedation practices. The 1995 report acknowledged that providing treatment aimed at alleviating pain and suffering that may shorten life was legal. On the other hand, the report recommended that the Criminal Code be clearer on this issue. We believe that the focus should be placed on information and education rather than on such a change.

The second and fourth recommendations in this chapter proposed that Health Canada develop the guidelines and standards for the provision of treatment to alleviate suffering where it may shorten life and for the practice of total sedation of patients. This task was to be carried out in collaboration with the provinces and territories and national professional associations. The Royal College recommends that this point be reconsidered. Health Canada should play an important supportive role, but the major responsibility for this lies clearly with the professional associations working with the public.

Regarding the third recommendation in this chapter, on education and training in pain control, the Royal College acknowledges its own responsibility in this matter. Thus, the college will use its powerful levers in the accreditation, certification and professional development of specialists. A greater understanding of the laws that regulate health care delivery will be at the forefront of our discussions for integration into our educational objectives.

Chapter 5 concerns withholding and withdrawal of life-sustaining treatment. In light of the clinical experience of the last five years, the need to modify the Criminal Code may be much less than previously anticipated. The specialized teams probably have more power to analyze each situation, make decisions and take appropriate action. Nowadays, communications with patients and their families are more direct and open. Greater access to consultants in ethical matters greatly assists caregivers in their work. We reiterate our previous comment on the participation of Health Canada in the development of clinical guidelines.

As to chapter 7, on assisted suicide, the majority of the recommendations remain valid to us and should be acted upon.

Chapter 8 concerns euthanasia. The Royal College considers the 1995 recommendations still valid, except perhaps for the need to modify the Criminal Code. Although this issue is clearly contentious, the medical specialists we have consulted believe there is no convincing need for modification at this time.

In conclusion, the implementation of the 1995 recommendations on palliative care must remain a high priority for all. The Royal College remains committed to enhancing the quality of training for medical specialists in relation to the issues that are encompassed within your document.

The Chairman: Thank you.

Mr. Jeff Poston, Executive Director, Canadian Pharmacists Association: I thank you for this opportunity to appear today. The Canadian Pharmacists Association is the national voluntary organization representing pharmacists in all areas of practice in Canada.

In approaching the process of reviewing and updating the committee's recommendations, we went back to the pharmacists with whom we spoke in 1995 and inquired of them how they have seen things change at the grassroots in everyday pharmacy practice in the hospital and in the community. If we revisit some of our recommendations relating to palliative care at that time, a number of positive trends seem to be emerging.

First, we see young graduates in medicine, pharmacy, and nursing who are more familiar with palliative care in general and having an improved level of knowledge. There also seems to be some evidence that family caregivers, physicians, nurses, and pharmacists have been working more and more as a team in this area. The consumers themselves, the general public, seem to have greater access to information relating to the issue of palliative care in general.

However, there are many areas that appear to remain of concern. Generally, without any major crises to bring the issue to public attention in the mainstream media, it seems to have lost profile and is not much of a focus for debate.

If we are to make progress in this area, the Senate committee may wish to consider a public opinion survey, and further work with the public to ascertain what consumers are thinking on this issue.

We see that home palliative care is far from being considered an integral part of our health care system. Funding cuts and jurisdictional issues have prevented the expansion of the health continuum to address home care and palliative care, to be able to provide symptom control, symptom relief, and pain control for patients so that they can die with dignity in the comfort of their own homes with their families and loved ones around them.

Current manpower shortages in health care professions make it difficult for the system to find sufficient providers of palliative care services, particularly on a home care basis and in the community.

Our poll of pharmacists across the country found that there are major provincial variations in the availability of palliative care and in access to those services. In some provinces, access varies from region to region, and there are certainly significant differences between rural and urban communities.

Funding remains a critical issue. The fact that access to some drugs is not covered, and the cost of drugs, force people to make difficult choices. In provinces with high deductible or co-pays in drug plans for seniors, patients have to consider whether they can afford expensive medications for control of symptoms, and some patients have been reported as foregoing treatment because of their fear of leaving their spouses destitute.

We see an increase in situations where patients have been admitted to hospital in order to receive medications free of charge, as a way of ensuring that symptom control and palliative care can be provided at the end of life.

We have certainly seen a trend in the development and growth of our knowledge with respect to pain control and sedation practices. New medications, more experience with using a variety of medications, and a greater willingness by practitioners to prescribe those medications in the provision of care to terminally ill patients have been recognized. Our members still report that there is resistance by some, particularly older, practitioners to prescribing the level of opioids needed to ensure that relatively pain-free end of life.

We have seen developments. My colleague from the Royal College of Physicians and Surgeons talked about total sedation. The term used in the literature is "terminal sedation". These are areas in which we have seen developments. I have appended to our brief a recent paper that provides the pharmacists' perspective on terminal sedation.

We welcome recognition of pharmacists' role as drug experts with respect to palliative care. Many protocols have been set in place that allow pharmacists and nurses to adjust the dosage of pain medication for patients receiving palliative care in the hospital or at home.

We have also recognized that many patients and their families appear to be better informed, realizing that they do not have to die in pain, and are becoming more open about asking for terminal sedation, particularly in the hospital situation. Patients and their families appear to be bringing up the issue of terminal sedation earlier than in the past.

We recommend to the committee that terminal sedation and total sedation practices be openly studied to assess their prevalence. This certainly builds on the recommendations that you heard from Dr. Brazeau on the need to work on clinical guidelines in this area.

On the issue of advance directives and living wills, practitioners have indicated to us that they have seen increased use of these over the past five years. Better-informed patients have started to use instruments accessed via the Internet. Although more and more providers are considering these as legally binding, we still hear of cases where patients' families have taken them out of the hospital when providers have indicated that they are not willing to abide by advance directives. Some work still needs to be done, and we recommend that the legal status of living wills or advance directives needs to be formally recognized in many jurisdictions.

I will now move on to the issue of physician-assisted suicide and terminal sedation. Building on the comments I made before, terminal sedation is an area where we do see the need for some further research. There is a suggestion that this is an issue that CIHR could look at, within that new structure. It is perhaps an area that would be well served by the participation of some of the institutes in that new structure. It is difficult to conduct research relating to the dosage, use and duration of therapy with medication in these sorts of circumstances. There is a need for a case-based approach to research in this area, and we certainly would encourage that that be done.

In our 1995 submission, we provided a list of conditions that we felt would need to be in place if physician-assisted suicide was to be permitted or contemplated in Canada. We should like to draw your attention to the experience in Oregon, where the Oregon Death with Dignity Act legalized a form of physician-assisted suicide. The act was passed at the end of 1997, and there has been some recent evaluation of that initiative. Under the act, terminally ill patients receive prescriptions for self-administered, lethal medications from their physicians.

Senator Corbin: On a point of order, is this not outside the scope of our study? We are dealing now specifically with euthanasia and assisted suicide. I thought your admonition at the beginning of the meeting was clear. We do not want to get involved in that.

The Chairman: Mr. Poston, the point of order is correct. That is outside the scope of the review by this committee. However, I thank you for providing us with the information because it is based on your original presentation and gives us an update. We will be updating certain sections in terms of the information available, although not dealing with the recommendations. From that perspective, it is useful material.

Mr. Poston: That was our intent in submitting it. We wanted to update our previous submission on the topic.

In closing, I should like to reiterate that patients need to be free to make appropriate choices with respect to their end of life. Also, an issue that has been of considerable debate within our profession is the need for providers to be free to refuse to participate in certain procedures on the basis of ethical or moral considerations.

As an association, we are concerned about the great variations in access to and availability of palliative care services across the country. We also believe that, in order to ensure access and portability of health coverage for those services, the provinces need to work on harmonizing the level of service available and expanding it where necessary. The availability of palliative care services should not be a function of where one lives, but of where those services are needed.

The Chairman: Thank you. Now from the Canadian Healthcare Association, Sharon Sholzberg-Gray.

Ms Sharon Sholzberg-Gray, President and CEO, Canadian Healthcare Association: The Canadian Healthcare Association, known as the CHA, is pleased to appear before your subcommittee. As requested, I will be providing an update on new developments related to the recommendations presented in the Senate's 1995 report entitled, "Of Life and Death."

CHA is the federation of provincial and territorial hospital and health organizations committed to preserving and strengthening Canada's health system. Through our membership, CHA represents regional health authorities, hospitals and health care facilities and agencies that employ approximately 1 million health care providers and serve Canadians across the country. These organizations are governed by trustees who act in the public interest.

CHA's mission is to improve the delivery of health services in Canada through policy development, advocacy, and leadership.

Through our provincial and territorial members, CHA represents a broad continuum of care including hospitals; long-term care facilities; home and community care agencies; community health services; public health; mental health; addiction services; children, youth and family services; housing services; and professional and licensing bodies. Therefore, many of our constituents deal with life-and-death realities on a day-to-day basis.

Our presentation today will focus on providing updates on three types of initiatives: CHA-specific initiatives; collaborative initiatives involving the Canadian Healthcare Association; and other initiatives of which we are aware.

With respect to CHA initiatives, the Senate Committee on Euthanasia and Assisted Suicide recommended that governments make palliative care programs a top priority in the restructuring of the health care system, and that there be an integrated approach to palliative care across care settings. These recommendations will not be completely implemented until we are able to realize the vision of an integrated health care system and until there are adequate levels of funding for this system.

CHA's vision is of a publicly funded health system that provides access to a broad range of comparable health services across Canada. Given that, and our breadth of membership, CHA's policy development and advocacy initiatives tend to focus on system issues. In this context, palliative care is part of the broad continuum of needed services for which CHA is continually advocating.

Some of CHA's current advocacy initiatives are focused on developing a sustainable health care system and ensuring adequate and long-term funding for it. Specifically, CHA's advocacy initiatives encompassing palliative care include "CHA's Framework for a Sustainable Health Care System in Canada, A Discussion Paper." This document outlines seven key components, including responding to the changing health needs of Canadians and realizing the vision of an integrated and innovative health care system.

One of CHA's purposes in developing this document is to encourage and facilitate public discussion and debate regarding our health care system and the necessary components for its sustainability. This document is available on CHA's Web site and will soon be available through our press. I brought copies with me for your information. Palliative care is an integral component of our vision of an integrated and innovative health care system.

Another CHA policy initiative is our brief to the Finance Committee in preparation for the 2000 federal budget. CHA prepared a brief entitled, "Creating a Sustainable Healthcare System for the New Millennium." Copies are available for your information.

I will spend a few minutes reviewing our funding recommendations because adequate funding of the existing health care system and the broader continuum of care is required if palliative care is to receive appropriate resources within the publicly funded system.

CHA believes that funding is needed for an integrated continuum of care, one which provides access to all types of health services; in other words, disease protection, health protection, health promotion, illness treatment and palliative care across the continuum of settings, including the home, the community, and institutions.

Unless all parts of the health care system are developed to their full potential, hospitals will continue to face crises as they strive to accommodate both higher service demands and funding constraints.

As the health care system adapts to change, the devolution of resources away from the traditional institutional infrastructure of hospitals must not imperil access to these needed health care services. Investment in and augmentation of all parts of the continuum of care is needed as we work toward the optimum system of an integrated, patient-centred continuum of care.

The current health care system is in crisis. Without adequate and sustained funding, many important and needed services such as palliative care will once again, or will continue to be, viewed as "boutique" services.

I am sure you have recently heard the word "boutique" applied to services in some of the discussions between the premiers of this country and the federal government on the issue of health. We believe that all of these services are an essential part of the Canadian health care system. None of these so-called "extras" can be termed "boutique".

CHA's funding recommendations include urging the federal government to immediately commit, by April 1, 2000, at least $1.5 billion to the Canadian health care system in order to stabilize the existing system and lay the foundation for creating a sustainable, accessible, integrated, innovative and publicly funded health care system for the new millennium.

We are also urging the federal government to provide a growth factor or escalator to the cash component of the CHST to ensure the long-term sustainability of our health care system. This growth factor should be introduced by April 1, 2001. Without it, important services will continue to be vulnerable to cost-cutting measures.

In addition, CHA is urging the federal government, in consultation with the provincial and territorial governments and health care organizations, to explore new funding mechanisms for health care. Such mechanisms may enable comparable services across a broader continuum of care to be available to all Canadians.

In the current atmosphere of crisis, it is difficult for health care facilities and agencies across the country to develop and implement innovative services, including appropriate palliative care services.

A third CHA initiative is our board of directors' "Watching Brief." At the annual review of strategic directions in October 1999, our organization's board of directors reaffirmed the need for CHA to maintain a watching brief on palliative care. This includes issues related to supporting informal caregivers and accessibility.

CHA's fourth area of initiatives related to palliative care are our CHA board policies. Over the years, CHA's board of directors has approved a number of policies related to palliative care services and issues. Since 1994, policies related to palliative care include an updated 1995 joint statement on resuscitative interventions and a 1999 joint statement on preventing and resolving ethical conflicts involving health care providers and persons receiving care, of which I will speak further in a minute or two.

In addition to those specific initiatives, there are a number of collaborative projects related to palliative care in which CHA is an active partner.

In this respect, CHA has been and will continue to be very supportive of other groups who are collaborating on or taking the lead in important palliative care initiatives. The Special Senate Committee on Euthanasia and Assisted Suicide made a number of recommendations regarding the development of guidelines to govern the withholding and withdrawal of life-sustaining treatment, the training of health care professionals in all aspects of palliative care, and the collection of information regarding specific treatments.

I will briefly describe three activities in which the CHA has been recently involved that directly touch on palliative care issues.

The joint statement on preventing and resolving ethical conflicts involving health care providers and persons receiving care was developed cooperatively and approved by the boards of directors of the Canadian Healthcare Association, the Canadian Medical Association, the Canadian Nurses Association, and the Catholic Health Association of Canada. This statement is available through each of the sponsoring associations -- some of them are represented here today -- and is available on all of our Web sites. I have brought some copies for your information.

This joint statement deals primarily with conflicts between the person receiving care, or his or her proxy, and care providers. It offers guidance for the development of policies to prevent and resolve ethical conflicts over the appropriateness of initiating, continuing, withholding, or withdrawing care or treatment.

Another collaborative initiative is the Canadian Palliative Care Association's project entitled, "Palliative Care Training for Support Workers", which is being funded by Health Canada. CHA is pleased to be participating in this important project as a member of the national advisory group. I brought a brief summary for your information. I am sure you will be hearing more about this innovative project from the Canadian Palliative Care Association.

CHA's interest in this project is in ensuring that all providers, including support workers, have access to appropriate training resources and support networks.

CHA and other national groups are also working with the Canadian Institute for Health Information on a home care indicators project that includes indicators related to palliation.

CHA is pleased to be involved in these initiatives, which encourage the development and implementation of key processes and resources related to issues of life and death.

In terms of an update on other initiatives in which CHA is not directly involved, the Senate Special Committee on Euthanasia and Assisted Suicide made a number of recommendations regarding the development of guidelines and standards for palliative care practice. In my written remarks, which I have given to the clerk of the committee, I note that the Canadian Palliative Care Association has received funding from Health Canada to work in this area. I should like to correct that and say that they are still seeking funding but have not yet received it. In fact, they are seeking funding from private sources as well.

In this connection, I should like to point out that the Canadian Palliative Care Association, whose work we value very much, has not received core funding from Health Canada. Thus, it will be less able in the future to carry on its important work in the palliative care area. I should like to make a plea on their behalf, before this committee, for Health Canada to reinstate core funding for the Canadian Palliative Care Association, and other, similar associations, so that they can carry on their valuable work.

Another recommendation from the Special Senate Committee on Euthanasia and Assisted Suicide referenced respite care as an essential component of an integrated approach to palliative care. The Canadian Healthcare Association has made its members aware of an excellent report available through the Canadian Association for Community Care related to respite care. I am proud to have played a role in this project. Formerly, I was the executive director of the Canadian Association for Community Care.

While there has been some progress in responding to palliative care issues over the past five years, there is still much to be done to ensure that palliative care services are integrated into the Canadian health care system. They need to be adequately funded so that they are available to all Canadians. They should be provided within national standards or guidelines and form part of a national database of health services. They should be supported by training resources for all providers and provide needed respite care. The Canadian Healthcare Association, and our provincial and territorial members, will continue to work with others to develop these needed resources and ensure that they are available across the country to health care organizations, providers, and consumers.

Thank you for the opportunity to appear today.

The Chairman: Thank you, Ms Sholzberg-Gray.

Dr. Gordon L. Crelinsten, Chair, Committee on Ethics, Canadian Medical Association: Madam Chairman, I am a cardiologist in private practice in Montreal and an Associate Professor of Medicine at McGill University. With me today is Dr. John Williams, Ph.D., Director of Ethics, Canadian Medical Association.

[Translation]

The Canadian Medical Association is grateful for this opportunity to meet with the subcommittee. Since you will be hearing from other medical organizations and individuals involved with the issues you have identified to study, we will not attempt to cover all of these issues. We will focus on a few of them and will answer questions on the others to the best of our ability.

[English]

Some members of the subcommittee will recall our presentation of November 23, 1994. We stand by the recommendations we made at that time and will not repeat them today. Instead, we will focus on what has occurred since your report was issued in 1995.

In 1996, the General Council of the Canadian Medical Association approved a new version of the association's code of ethics that resulted from an extensive revision process lasting four years. Several articles of the revised code pertain specifically to the issues you are considering. For example, article 3 states:

Provide for appropriate care for your patient, including physical comfort and spiritual and psychosocial support even when cure is no longer possible.

Article 15 states:

Respect the right of a competent patient to accept or reject any medical care recommended.

Article 18 provides:

Ascertain wherever possible and recognize your patient's wishes about the initiation, continuation or cessation of life-sustaining treatment.

Article 19 states:

Respect the intentions of an incompetent patient as they were expressed (e.g., through an advance directive or proxy designation) before the patient became incompetent.

Article 21 states:

Be considerate of the patient's family and significant others and cooperate with them in the patient's interest.

Article 42 states:

Collaborate with other physicians and health professionals in the care of patients and the functioning and improvement of health services.

In 1998, the Canadian Medical Association updated the policy on physician-assisted death, which we presented to you in November 1994, and renamed it "Euthanasia and Assisted Suicide." The changes were relatively minor and were intended to bring the policy into conformity with the 1996 version of the code of ethics.

In our previous appearance before the committee, we discussed at length the joint statement on resuscitative interventions developed with the Canadian Healthcare Association, the Canadian Nurses Association, and the Catholic Health Association of Canada. A revised version of that document was published in 1995. Subsequently, the four organizations produced a pamphlet for patients, families, and health care providers entitled, "Making Decisions About Cardiopulmonary Resuscitation".

More recently, these same organizations developed a joint statement on preventing and resolving ethical conflicts involving health care providers and persons receiving care. Copies of all these documents are attached for your study.

These publications are evidence that the Canadian Medical Association has not been idle in regard to the issues addressed by this committee in your 1995 report.

Of the report's 28 recommendations, however, none was directed to our association. Many of them called for changes in the law or other initiatives by the federal or provincial and territorial governments. Since, for the most part, governments have not responded to these recommendations, there has been little opportunity for the Canadian Medical Association to participate in their implementation.

Although we agree with the spirit of most of the recommendations in your 1995 report, we respectfully disagree with the call for Health Canada to develop guidelines and standards for the provision of treatment for the purpose of alleviating suffering where that may shorten life, for the practice of the total sedation of patients, and to govern the withholding and withdrawal of life-sustaining treatment.

Neither Health Canada, nor any other branch of government -- federal, provincial or territorial -- is capable of producing guidelines for medical practice. Some years ago, the Canadian Medical Association facilitated a guidelines development process that issued a set of Canadian clinical practice guidelines dated 1994. Guideline 7 of that document states:

Clinical practice guidelines should be developed by physicians in collaboration with representatives of those who will be affected by the specific intervention(s) in question, including relevant physician groups, patients and other health care providers as appropriate.

There may be a role for government in funding the development of such guidelines by the appropriate organizations, but governments should not try to do the development themselves. They have neither the appropriate expertise nor the requisite credibility in the area of clinical practice. We are asking for strong cooperation from government in helping national organizations develop these guidelines for the use of health care professionals in these areas.

On a more positive note, the Canadian Medical Association is strongly supportive of the efforts of organizations involved in palliative care to extend these services more widely. We have followed with interest the literature on the deficiencies of end-of-life care in the United States, especially the SUPPORT study, or "Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments". With financial support from the Robert Wood Johnson Foundation, the American Medical Association has developed a set of sophisticated curriculum packages for its "Education for Physicians on End-of-Life Care" program, which is intended to improve such care.

It is our understanding that the Joint Centre for Bioethics of the University of Toronto has received funding to extend this excellent program into Canada.

In 1998, Professor Donna Wilson and colleagues at the University of Alberta produced a voluminous report on "Social and Health Care Trends Influencing Palliative Care and the Location of Death in Twentieth-Century Canada." The Canadian Palliative Care Association has been revising its document "Palliative Care: Towards a Consensus in Standardized Principles of Practice." Health Canada is currently funding a project to produce "A Guide to End-of-Life Care for Elderly Persons", which should be finished within the next few months. The Centre for Bioethics of the Clinical Research Institute of Montreal continues to publish the internationally recognized Journal of Palliative Care. The Canadian Medical Association applauds these activities and looks forward to seeing their results integrated into mainstream medical education and clinical practice.

With regard to the issues of withholding and withdrawal of life-sustaining treatment, advance directives, assisted suicide and euthanasia, we consider that the Canadian Medical Association policies we presented to you in 1994 have stood the test of time and do not require revision. We stand by the recommendations we made to you when we appeared on November 23, 1994.

Thank you for this opportunity to speak with you. I look forward to your questions.

The Chairman: Thank you.

Ms Sharon Nield, Manager, Nursing Policy and Regulatory Support, Canadian Nurses Association: Thank you for inviting the Canadian Nurses Association to participate in this important discussion. The CNA is a federation of 11 provincial and territorial nursing associations representing 110,000 registered nurses across the country. We welcome this update to your report "Of Life and Death" from a number of perspectives.

First, one of our key recommendations when we presented to the committee in October 1994 was to ensure broad public debate on end-of-life issues. This review provides the opportunity to further the discussions begun at that time and returns the issue to the public eye.

Second, we welcome the opportunity to reflect on and summarize our own activities in support of the committee's and our own recommendations. In keeping with the purpose of your task, we will restrict our remarks to our perceptions of the progress made, our own contributions, and recommendations for further emphasis.

We commend the committee for "Of Life and Death." The recommendations speak to many of the concerns we expressed, particularly those related to palliative care, pain control, advance directives, and education. Your comprehensive report reflects the very diverse views of your witnesses on this complex and difficult issue.

The landscape of the health care system has changed dramatically in the last five years. Some of these changes, such as increased multidisciplinary care, greater demand by consumers for information and for control over their own care, and advanced technologies for pain and symptom management have facilitated the adoption of the committee's recommendations. Other changes, such as shifts to community care without sufficient resources and a continued linking of end-of-life issues with resource allocation, have hampered the more comprehensive and appropriate policy framework that was envisioned and to which our colleague from the Canadian Healthcare Association has also referred.

End-of-life issues appear to have fallen from the public view, resurfacing only in light of high-profile media coverage in circumstances such as the Latimer case. This sparked much of the testimony at the time of the committee hearings. We continue to believe that public discussion and education, separated from individual circumstances that are very emotional, needs to occur. As our demographic profile shifts to an older population, these issues will increasingly demand a national policy approach to end-of-life issues.

The nursing profession, in conjunction with many of our colleagues around the table today, has played its part in implementing many of the recommendations contained in "Of Life and Death."

The CNA code of ethics for registered nurses, which establishes the ethical responsibilities for Canadian nurses, was updated and re-issued in 1997 following an extensive and lengthy national consultation process. Strengthening the ethical values of "choice" and "dignity" were key elements of the revisions. In guiding ethical decision-making, the code highlights the expectation that registered nurses will involve clients in decision-making, respect informed decisions of competent persons to refuse treatment, and will practice within relevant legislation governing consent or choice. It also highlights the need for nurses to respect decisions and lawful directives about care choices and to respect and honour clients' wishes regarding quality of life.

As well as providing the code of ethics, CNA has developed comprehensive educational material regarding application of the code for use by schools of nursing and provincial and territorial professional associations. We have also created a national ethics advisory committee to provide advice to CNA regarding further updates required to reflect the changing health care system and the need of nurses for guidance within that system.

At the time of our presentation to the committee five years ago, we had just completed the joint statement, to which reference has been made this morning, with six other national health organizations, on advance directives. This has been widely distributed to nurses. In May 1998, we began a series of "Ethics in Practice" papers, of which the initial paper was on the nurse's role in advance directives. Again, this has been widely distributed to nurses and used by provincial and territorial nursing associations. It provides information about specific types of advance directives and case study examples.

The joint statement on preventing and resolving ethical conflicts has also been referred to by my colleagues. It was publicly released last June and has been widely shared with our members. Setting out the principles upon which informed choices can be made, the statement also provides health care organizations and professionals with specific guidance on a process to resolve ethical conflicts. This is a very important document, as we face increasingly difficult choices of care in a highly complex environment.

Beyond the leadership activities of professional associations, however, individual nurses have acted to clarify issues around end-of-life care and ethical dilemmas. One example was demonstrated by registered nurses in Montreal who experienced professional development sessions with a nurse ethicist. As a result, two of the staff nurses set about organizing an education project for all of the staff nurses within their unit that allowed them to develop end-of-life protocols and discussions on advance directives with every patient. Their project was presented to the Canadian Bioethics Society conference, later to the CNA biannual convention, and also to the International Congress of Nurses convention in London this past June. Key to their success was increasing the comfort level of the nursing staff, and all of the staff who worked with them, in handling the issue with patients. This is but one of many examples of how nurses are attempting to ensure that the choices of clients are supported and that ethical problems around end-of-life care are avoided.

In all, open discussion, respect for the wishes of the clients and their families, and clear institutional processes are key. Nurses believe that end-of-life issues must be considered in the context of the goals of care. If this goal-oriented approach is taken, we might reach a situation in which patients can find meaning in their decision-making because their choices are meaningful.

Despite the progress in terms of education, policy development, and care plans, however, we know there is more work to be done. The area of palliative care, which we highlighted in our 1994 brief, particularly home-based palliative care, remains of concern.

The funding cuts of the 1990s have resulted in an acute care system that sends people home "quicker and sicker," and little funding has been provided for community care. The committee's recommendation for an integrated approach to palliative care has not been realized. This has also been brought forward by my colleagues this morning.

Although those facing terminal illnesses may choose to die at home, supports are needed to ensure that they do so cared for, as free from pain as possible, and with dignity. People need to be free from the feeling that they are a burden. The burden of care should not rest on family members, who are also carrying the burden of loss and grief. It is often the lack of such supports, and the burden that is placed on their loved ones, rather than the illness itself, that make people consider assisted suicide.

We recommend that governments be encouraged to provide funding for quality palliative care programs in both hospital and home care settings. As noted by the committee, respite care is an essential component of such a program.

We would encourage and support more research into palliative care, pain management, and quality-of-life issues, and hope that this will be a feature of the proposed Canadian Institutes for Health Research, once they are established.

We are interested in the comments of other witnesses regarding your recommendations on providing clarification with respect to the Criminal Code. While we have taken the approach that education, open dialogue, and sound policy direction should minimize the occurrence of litigation about end-of-life issues, we know that many of our members, particularly those who are working in home care settings, remain concerned about their liability.

In summary, we welcome this review and offer the following recommendations:

First, that the federal government continue to seek ways to enhance public discussion on the issues of euthanasia, assisted suicide, and end-of-life issues to truly determine what values we hold as a country, and that more public information be provided about consumer choice with respect to care and refusal of treatment;

Second, that research into palliative care and quality of life be encouraged through the auspices of the Canadian Institutes for Health Research;

Third, that a funded, integrated and national plan for community and home care be provided that will ensure quality palliative home care for Canadians; and

Fourth, that legislative changes be broadly communicated to the health care community.

Across the country, our nurses deal with difficult and complex issues of end-of-life treatment on a daily basis. The current state of the health care system has made it difficult for nurses to feel that they are meeting the quality of care and the ethical standards that they demand of themselves and that they are required by legislation to provide. The CNA will continue to provide a leadership role to assist and educate our members, and we look forward to your support.

The Chairman: I wish to thank all of you. We will now proceed to questions.

Senator Roche: First, I wish to thank the witnesses, who have been very informative.

I should like to ask Dr. Brazeau what he thinks of the following sentence: People are dying in excruciating pain; people are attempting suicide, failing, and ending up in worse shape than before they attempted suicide. That sentence is in the context of a plea for more palliative care facilities.

I can see I have given you a problem with that question. Let me rephrase it: Do you believe that people are dying in excruciating pain and that people are attempting suicide, failing, and ending up in worse shape than before they attempted suicide?

Dr. Brazeau: The answer to the first part of the question is that I am told that that has been occurring in Canada, that people are in excruciating pain and dying in that way. I am also told by the medical specialists who are caring for them with teams of other people that that is occurring less. What I am hearing mostly from these medical specialists is that we need to do much more to ensure that this no longer occurs.

Senator Roche: The chairman and the clerk will recognize that the sentence I read was from the brief of Professor Downie, who appeared before us, and who, in answer to my request to her, said that she would provide us with empirical evidence. Has anything arrived yet?

Dr. Heather Lank, Clerk of the Committee: Not yet.

Senator Roche: What happened this morning, with Senator Corbin's point of order and intervention, is illustrative of the problem that we are facing in this committee. When one of the witnesses went into the area of euthanasia and assisted suicide, from what I understood to be an advocacy position -- and I believe Senator Corbin also interpreted it that way -- it was brought to our attention that the mandate of this subcommittee is not to deal with those areas, but to deal with the unanimous decisions of the committee, which revolved around more palliative care. I sense that witnesses are coming before this committee -- not all, but some witnesses -- and are leading us toward addressing the areas that had divided the committee in its original report, assisted suicide and non-voluntary euthanasia. That leads me to wonder if we can, in fact, differentiate realistically. Does the public, even some of the informed public, consider palliative care to include assisted suicide and involuntary euthanasia?

Ms Nield, in her excellent testimony, concluded her remarks by saying that her association called for a greater discussion of questions around euthanasia to "determine what values we hold as a country."

I do not propose to try to resolve this dilemma at the moment. However, I am flagging it here to indicate my deep concern that our intention -- and the need for greater palliative care both at hospitals and at home in particular is obvious -- is perforce being clouded by the discussion that looms on the difficult questions on which there was not agreement. Personally, I do not know what to do about this.

The Chairman: Senator Roche, I am not sure this is the appropriate time for this discussion.

Senator Roche: It may not be, Madam Chairman.

The Chairman: I want to correct something on the record. When we heard the presentation this morning from the Canadian Pharmacists Association, you implied that their brief indicated that they would make some comments indicating their support of euthanasia. If you read the fourth point in their brief, senator, you will see that it is very clear. They have stated that their positions and recommendations, as stated in 1995, are still valid if the government were to legalize euthanasia. They certainly have not been advocates -- and they are not advocates now -- of euthanasia. That must be clearly on the record.

Senator Roche: Madam Chairman, I take your point. However, Professor Downie's previous testimony certainly led to a discussion, if not to advocacy, of this position.

Perhaps I will direct this question to Ms Nield. Nurses are on the front line of this whole subject. In your view, does the public differentiate between good palliative care on the one hand and assisted suicide on the other?

Ms Nield: I am not sure that I am able to speak on what the public believes. The experience of nurses is that there is a great deal of confusion around some end-of-life issues and on the nurses' responsibilities. I believe that quality palliative care is better understood now than it ever has been. I also believe that there are serious issues related to access to palliative care. I believe that alters the public's perception. It has not been my experience that palliative care and assisted suicide are intrinsically linked.

Dr. Crelinsten: I echo what has been said. I cannot speak for the public. I can speak for what I think the members of the Canadian Medical Association feel, which is that participation in euthanasia and assisted suicide is not the job of members of the association.

Speaking as a physician who often cares for people near the end of life with severe, advanced cardiologic illness, my personal experience tells me that the patients I care for and in whose care I participate do not blur the lines between palliative care and the relief of suffering, whether it be physical, mental, spiritual or emotional, and assisted suicide. In fact, many of the patients who enter into that discussion feel that assisted suicide may be a failure of palliative medicine. They look to assisted suicide as a way out when the precepts and skills of palliative care physicians are either not available to them or are not sufficiently capable of dealing with the issues that they present.

Senator Roche: Ms Sholzberg-Gray, after receiving the report "Of Life and Death", which called unanimously for greater palliative care, and to which the government did not respond after witnesses told the committee that there is a crisis in palliative care, do you think the reason the government has not responded to the recommendations is that they did not want to get into issues that involve the highly controversial subject of assisted suicide and euthanasia?

Ms Sholzberg-Gray: No. The fact that the government -- and I am speaking here of the federal government, as well as provincial and territorial governments -- has not adequately funded health care, which includes all services, including palliative care, is not related to fear of discussing issues like assisted suicide but, rather, a lack of understanding or willingness to sufficiently fund the health care system in this country. Remember that some years ago -- in fact at the time that the committee first presented its report -- all governments in Canada were in a heavy cost-cutting mode. That was the objective of government at that time. We are now coming around to the notion that shifting the burden of the deficit to the health sector is not necessarily the way to go. It is not related to fear of discussing these issues but, rather, fear of spending money on those much-needed services. I am looking forward to the appropriate funding for those services, including palliative care.

The Chairman: Ms Sholzberg-Gray, do you also think that one of the causes may be that palliative care was kind of a new kid on the block at about the same time that these cuts were being made, and that because it was not part of the core funding, it has never become a part?

Ms Sholzberg-Gray: I think you are right. It is not the only thing that was the new kid on the block, so to speak. We are talking about a wide range of community services that are not properly funded and are not part of our core medicare services in this country, remembering that "medicare" is defined as hospital and physician services. We have not yet extended those services in the way that we should.

Some provinces have included palliative care as part of their core services in recent times. I understand, for instance, that your own Province of Manitoba, Madam Chair, is just bringing palliative care services into core funded services. That is an important move. The truth of the matter is that it would be useful if, when the federal government discusses with the provinces and the territories -- presumably as early as this May -- extending the continuum of care, that discussion could be broader than just home care or community care, and include a variety of services and mention by name palliative care and other kinds of services to which Canadians do not have access in any pre-determined way. It must be noted that we have this patchwork quilt across the country where, in one province, people might receive supplies and pharmaceuticals for palliative care at home, while in other provinces they do not. In some provinces, one might be able to die with dignity at home, while in other places that possibility is not there. The role of long-term care facilities in this mix, for example, is not well understood.

It is important to look at the health system in an integrated way, as the committee itself recommended, and that palliative care services be understood and funded within that context. We are looking forward to the discussions that will ensue in May, now that we are looking to develop a health system that meets the needs of Canadians in all settings and for all kinds of services.

[Translation]

Senator Pépin: We heard last week the representations of palliative care associations. Following your representations, we all agree that the percentage of elderly people in the population has increased considerably and that more people get cancer and die of cancer. We are therefore unanimous in establishing that we should allocate more funds to the various associations and to research.

However, I would like to emphasize a point raised in the brief of the nurses association. You state in one of your recommendations on Chapter 8 that there is no need to modify the Criminal Code. The medical specialists said the same thing when they were consulted. Palliative care providers told us something must absolutely be done in that area. The nurses also mentioned in their presentation that the issue must be clarified. Can you tell me why your approach is different from the approach of the people on the front line?

Mr. Brazeau: The different point of view expressed by medical specialists is a reflection of the marked progress in the technology over the last five years. Such progress helped clear up the confusion which existed in the public and in the medical profession.

People involved in pain management and palliative care have benefited also from that evolution, and more information is available now. They feel more at ease to take medical and professional measures which might have a shock effect.

Nowadays, we talk a lot about the imputability of physicians. We would be quite willing today to advocate positions which would differ strongly from those we would have taken five years ago.

Such comments testify to the decision-making power physicians have acquired following a well defined clinical experience; a better understanding of the issues makes their task easier. This is why the Royal College of Physicians and Surgeons stresses education programs aimed at a better understanding of Canadian legislation, among other things, as one of the main solutions enabling us to go forward.

Senator Pépin: Is it one of the reasons why we should invest more funds in training programs?

Mr. Brazeau: We are now in an important period in Canada regarding the change in attitude on health services funding. Funding is not the issue. We must not lose sight of the need for a better integration of those services. People are working increasingly in teams or in cooperation with other people or other groups. Developing the models needed for a better integration of services is a complicated process. It is the main challenge for the years ahead. We have the ability to develop different management models, adapted to the regions, across the country. We will not be able to do it in one or two years, but the medical community is ready to take up the challenge. It is how the public should look at the renewal of health services.

Senator Pépin: We must simply keep learning how to work with the various levels.

Mr. Brazeau: We must dare to do it without forgetting the time it took to establish health services as we know them in Canada today.

[English]

Senator Pépin: I have a question for the representative from the Canadian Nurses Association.

You are the people who are working day-to-day with the legislation or recommendations. What are some of the elements of a quality palliative care system? What are patients' families experiencing today?

Ms Nield: The most significant element is access within an integrated and coordinated system. For example, nurses who work in community health centres in Ontario have told us that it is not possible for them to help their clients move into a palliative care program unless they have a particular qualifying diagnosis. The patient may not be dying actively enough to qualify for the particular program in their area. If a program is restricted or limited to someone who is very actively dying because there are fewer resources for that program, then it does not serve the broad, integrated approach that we ask for today. It needs to be integrated into that continuum of care, particularly with long-term care and the treatment of chronic illness. There must be a balance of appropriate treatment and pain and symptom management and control, as well as psychological, spiritual and emotional support for the individual within the context of the family.

What are people experiencing today? Some very fortunate people are experiencing that. The nurses who work within that system feel very fortunate to be there and to be able to provide care in that context. However, many people do not qualify, for whatever reason. Because of lack of access, because of the geography, because of the region, they are not able to access palliative care services. They may be dealing with end-of-life issues in an acute care hospital that does not have palliative care resources and is understaffed, underfunded, and overburdened. They may be dealing with it in their homes in which they have access to very little home care support. We hear from nurses who work in community and home care that it is a very difficult situation. I think that would be echoed by patients and their families.

Senator Pépin: Someone said that we must learn how to work together. I agree that it will vary from one region to another because we have different perceptions. However, you said that access is very difficult and you gave a reason. Is it also because of lack of money for the patient? Mr. Poston said that the cost of medication varies. He also said that, depending on the amount of money that they have, some can receive the best medication. Does it vary because the legislation varies from one province to another?

Mr. Poston: It varies because of the differences in drug plans across the provinces and also, obviously, depends on the patient's age and financial status. As a rule, a variety of those factors affect an individual's ability to qualify for drug benefit support.

Senator Pépin: Perhaps I misunderstood you, but did you not say that some families or people were removing patients from hospital?

Mr. Poston: We have heard of patients who, despite the codes of ethics in medicine, reported that advance directives were not being complied with.

In those situations in the hospital setting, the family had decided to care for the patient at home.

Senator Pépin: As a nurse, what are the main questions in dealing with the end-of-life issue?

Ms Nield: The lack of clarity about how well advance directives and the patient's wishes are really being balanced is a serious issue for nurses working in home and community settings.

I believe the individual ethical problems are being handled better. I believe there is more education, more understanding, more working together, but the increase in high-tech care, on the one hand -- the availability of very highly technological and acute care responses -- and the lack of resources for home and community care on the other, create an awkward situation to navigate.

Our nurse ethicists remind us that when we use the negative language of "withdrawing or withholding treatment", that often creates a situation in which the patients feel they will receive less of something. If we can move more toward establishing goals of care that respond to choice and the individual needs of patients, that will create a better context.

[Translation]

Senator Corbin: Dr Brazeau, I am trying to understand what is the specific role of the Royal College of Physicians and Surgeons of Canada vis-à-vis the general training of medical professionals. At the present time, in medical schools across the country, are physicians being trained adequately before they reach any level of specialisation? Is there adequate training in palliative care? Or is it rather a topic which is only dealt with very briefly? We were told five years ago that a few hours were dedicated to it before going on to more interesting topics.

Mr. Brazeau: I have to answer in the negative, it is not adequate. I have to tell you also that it is precisely the reason why measures have been taken to rectify the situation. Thus, there has been an integration of services. Regarding the medical profession, the first aspect of service integration we must look at is integration of medical services between specialists, family physicians and their colleagues.

We looked at the issue of palliative care together with the College of Family Physicians of Canada and we agreed on a one-year program of supplementary training in palliative care. It is certainly not sufficient, but it is a start.

Senator Corbin: It is however much more than what was done in the past.

Mr. Brazeau: Yes, and I actually gave you a list of medical schools which have such programs already and those having programs which will be certified soon. Nevertheless, the changes flowing from our standards and rules for each specialty regarding those issues are even more significant.

Another element might even be more significant: some people say that, in medicine, we are still paying the price of the industrial revolution and that we have fragmented the patient too much into medical specialties.

Therefore, the aim was to address such issues when, as early as in 1996, the Royal College looked at the general training as well as all aspects of training for medical specialists who must pay much more attention to those various roles, not only as specialised physicians but also as communicators. I see a direct link between their role as communicators and the challenges they will face with the integration of services.

It is not adequate, but we do not just stand idly by. Actions have been taken for years, the first results are obvious, and many more will be taken to ensure progress.

[English]

Senator Corbin: I would like to address a more general question and invite any of the interveners to respond as they wish.

I thought I detected a desire -- it may or may not be subtle -- on the part of the organizations represented here this morning for a corporate view of codes of ethics development, and by that I mean, to a certain degree, to the exclusion of government or governments.

In other words, what you are saying is, "We, of all the people in this country, are best placed to develop significant, up-to-date codes of ethics and practices in the alleviation of human pain. Yes, the government may provide us with the funds, of course." I subscribe to that last part. There are underfunded initiatives that require more attention. I come back to what I call your "corporate view". To some extent, I believe in that myself. It is you the practitioners, with the education, the formation, the experience, the knowledge, and the cross-pollination in day-to-day practice, who are most capable, if you wish to put your mind to it, of developing a broadly based code of ethics and practices that aim at alleviating human pain and making the passage to death more supportable.

I wonder if you understand my point.

Dr. Henry Dinsdale, Past President, National Council on Ethics in Human Research, Royal College of Physicians and Surgeons of Canada: Madam Chairman, if I might respond to that, this is an extremely important issue. I might use a comparison with the United Kingdom, where in 1973, the Department of Health asked the Royal College of Physicians in London to come up with ethical review guidelines on the use of humans in research. There was a clear interaction and request from government. The Royal College of Physicians responded by putting together a set of guidelines that the United Kingdom Department of Health adopted two years later.

I think one of the problems we have in Canada is a marked under-utilization by government of the enormous strength and wisdom of the professionals in the country. It is a very muddied situation. I think Dr. Crelinsten referred to this in part.

We see it, for instance, in the Health Protection Branch and aspects of regulation of drugs, where there is already a very close interaction between government regulators and industry, but where there is a steep learning curve required on interaction with the professionals who are willing and able to provide advice.

I see this as one of the real challenges of the health care system.

In an odd way, in a federal system, you are able to promulgate national standards primarily through either non-governmental or relatively free-standing organizations.

For example, at the Royal College we can set national standards for the training and practice of specialists, although obviously each province has its own licensing authority. That is also the case with the hospital associations. In an odd way, these groups that are at somewhat of a remove and have strong moral suasion are able to have standards established, enforced, and accredited across the country.

A question was asked about the lack of response from Health Canada to some of the previous suggestions about guidelines. I would have been interested to know how Health Canada either maintained a silence on that or responded to it. It is only within the last few months that Health Canada has begun to put together an envelope of ethics. It is now beginning to think about this situation and ask: What should the role of Health Canada be in looking at some of these issues? I have no idea what answers they will come up with, but I think they are beginning to ask the questions for the first time.

Dr. Brazeau mentioned that I am past president of the National Council on Ethics in Human Research, a group that has been supported by the Royal College, the three funding research councils, and Health Canada. An important question now is: How will we evaluate the research ethics boards across the country? The kind of mechanisms we need are the ones for which we find models at the Royal College. A clear question should go out to these professional organizations, and government can do what it wishes with the response. We must better develop that interaction.

Ms Sholzberg-Gray: I think Dr. Crelinsten was talking about the importance of developing clinical guidelines and the role of the Canadian Medical Association in that area. I think that is an important role. Having said that, though, it is important for Health Canada to play some kind of brokerage role through the federal, provincial and territorial committees that meet on a regular basis. Again, that points to the complexity of our country, where we have a federal system and a shared responsibility in health. Some would argue that the federal government sets national standards and uses spending power. However, some provinces would dispute that statement and say that delivery of the system is in the hands of the provincial governments. Somehow -- that is, through the federal, provincial, territorial committee process -- more work must be done. In addition, the federal government could help through funding processes, including bringing together a number of stakeholders such as national associations, which do not hold all wisdom, understanding that the public interest must be represented in any cooperative mechanism.

Those are ways in which the federal government could bring people together without being prescriptive. We were all saying that they should not to lay down the guidelines and impose them on anyone. I think it is a complex issue and we all have a role to play here, including all the governments and the public.

Mr. Poston: You said the professions can play a key role in the development of ethics and guidelines. However, is there a need for research to inform that process and for information to be systematically gathered and analyzed to help formulate such guidelines and ethical statements? Building on what Ms Sholzberg-Gray said, there is a real need for public consultation so that we have a clear understanding of what the underlying societal values are on which we will base these ethics. That is particularly important, given the multicultural nature of Canada.

As the Chair pointed out, our comments with respect to the Oregon experience are solely based on the fact that we made some conditional statements in our 1995 brief, wherein we stipulated, "if the government was to do things." We were drawing the committee's attention to some research and to an experience that has addressed some of the conditions that we had mentioned with respect to "if that was the case." It is learning from experiences in other areas, which is part of the research process, that will help us inform the development of such guidelines and the formulation of appropriate ethics.

Senator Beaudoin: I would like to come back to the basic question of the Criminal Code. I am very surprised to hear that, today, there is less need to modify the Criminal Code than in 1995.

It is difficult to amend the Criminal Code, although we do it regularly from time to time. In this field, however, it is much more difficult. Is the public aware of the differences between withdrawing and withholding, and so on? My answer is "No, they are not aware."

I remember a discussion I had with some experts on this matter. In 1995, we were able to develop a lexicon: What is euthanasia? What is assisted suicide? Thank God, we succeeded. It is very positive, in my opinion. However, it does not mean that everyone agrees with that lexicon. That is the problem. We were unanimous in many fields but we were majority/minority-minded in two areas. Finally, we will draft a bill on the subjects where we were unanimous. We should have had them that much earlier, but we did not succeed.

There are two ways to settle this problem: Leave it to the courts or do our job. Our job here is to develop better laws. There is no doubt in my mind that we have a lot to do. The provinces have a lot of competency in that field. In the area of the Criminal Code, we are king; in the area of health and welfare, we are not. We are very important, but we are not alone.

[Translation]

Dr. Brazeau, why do you say that there is no need to amend the Criminal Code?

Mr. Brazeau: We do not say that it is not necessary to modify the Criminal Code. We say that, from the point of view of specialized medicine, il is not necessary to change it. Our medical specialists tell us that, with the experiences of the last few years, a better understanding of the Criminal code contents, of what it means and how it is to be applied on a day-to-day basis, has answered their concerns and eliminated the existing barriers to providing specialized care in Canada. Nevertheless, we are not saying that it might not be necessary for other reasons.

[English]

Senator Beaudoin: I agree with you entirely.

The Chairman: Senator Beaudoin, I have a supplementary question. When the representative of the family physicians was here last week, he indicated that, because of the Dr. Nancy Morrison case in Nova Scotia, there was a real chill on providing adequate amounts of opiates -- not potassium chloride, that was a whole other issue. Doctors were now retreating from giving adequate amounts of pain relief. How would you respond to that?

Dr. Brazeau: That was specifically alluded to with the medical specialists with whom we have been discussing this issue. In fact, they did not express the same point of view as was put forward by the family physicians. They claim that they see things differently. I indicated earlier to Senator Pépin that the members commenting now are saying that, in their own units, they are seeing clarification of the interpretation of the law and how it should be applied, and clarification of what it is possible for them to do.

They are feeling a greater empowerment and are willing to move forward, to do the analysis necessary to make the required decisions, and to take the necessary action and ultimately be willing to defend their actions and be accountable for them.

Senator Beaudoin: I would agree with you in the case of palliative care. There is no problem there, in my opinion. There is a question of money and some other issues, but palliative care is not a big problem. We are all in favour of it. The provinces have a lot to do, since hospitalization is provincial. Do not forget that.

We, the federal authority of this country, also have a lot to do in health. We have jurisprudence in the field of withdrawing and withholding treatment. In my opinion, that is not good enough. It should be clearer, and the only way to render that clearer is to amend the Criminal Code so that the doctors and the nurses will be protected. They will know, at last, what they can and cannot do. That is not bad thing, in my opinion.

Dr. Brazeau: I repeat that our intention is not to prevent you from doing this. I do suspect that, from the discussions with the specialists that we have been relating, some other thoughts come to mind. It is quite clear that the specialists we have talked to are convinced that moving ahead and getting substantial progress in terms of palliative care would impact on the other issues that are before us, including the withholding and withdrawal of services, and would probably attenuate considerably some of the other issues confronting them or that have confronted them in the past.

The underlying concern is that if there are modifications to the Criminal Code, as put forward by a number of our people, we must then go through the process of interpretation of the new rules. At this time, they are concerned about the major impacts that a change in the Criminal Code could bring about. They do not necessarily see that impact as essentially and fundamentally positive.

Dr. Crelinsten: In our presentation this morning, we did say that the Canadian Medical Association stood by the recommendations we made on November 23, 1994. For the record, it is important to reiterate the recommendation on this particular issue. We do agree with Senator Beaudoin that it is important that the general part of the Criminal Code be clarified so that physicians are not culpable if they withhold or withdraw treatment that patients do not want. We made that recommendation in 1994, and I think the Canadian Medical Association would stand by that.

Ms Sholzberg-Gray: I am a little reluctant to speak about the law. I must admit that, once upon a time, I was a practising lawyer. I no longer am. I understand Senator Beaudoin's concern about relying on the jurisprudence, since that jurisprudence may not always be clear and give direction to people in the field -- doctors, nurses, and others, including hospitals that belong to my national association.

The joint statement, to which we referred, on resolving ethical conflicts is one step in the right direction. Underlying that joint statement is a clarification and understanding of what withholding and withdrawing treatment means and the necessity for proper communication between families and people providing care. Hopefully, it will mean that hospitals and professionals will not be subject to prosecution or litigation. It does seem that things would be clearer if these items were clarified in the criminal law, which is the one area in which the federal government has absolute jurisdiction.

However, one reason people put forward for not doing it is that these kinds of joint statements have meant that, in practice, people seem to be working quite well in explaining withholding and withdrawal of treatment, so the criminal law might not be needed. Then again, it might be needed for further clarification.

Senator Beaudoin: This is an interesting point because it comes from the experts, and I believe in experts. Another point is the guidelines. You say that the House of Lords in the United Kingdom has engaged in some consultations in order to learn more about the guidelines. I think they are right and we should do that in this country. However, our problem is a bit more complicated. Sometimes we need guidelines in legislation, especially with the Charter of Rights and Freedoms. We have a tremendous amount of jurisprudence -- 400 cases -- on the Charter of Rights and Freedoms. You need to be quite an expert to understand it all. It applies to everyone, and our world is becoming more and more complex.

I agree that we, the legislative branch, should not draft or make guidelines without consulting the doctors, the nurses, the hospitals, et cetera, because they know what we do not. However, we must do our job. Sometimes guidelines need to be crafted by Parliament or the Governor in Council, after consultation with the authorities concerned, in order that the population knows exactly what can and cannot be done.

If you give that power to certain groups, as brilliant as they may be, the results could vary from one province to another. We need some standards in this country on health care. When something is contained in the Criminal Code, there is no problem because it applies across the country. That is quite an asset. Those who do not have that arrangement look at Canada and say, "Oh, you were right." In that sense, although we should have a great deal of consultation, we must accept that, in the end, the guidelines should be contained in our laws and regulations. Do you want to leave that to the doctors and the associations, with the risk that it may vary from one province to another? That worries me.

Dr. Brazeau: We agree that we should have national standards and we are a national standard-setting organization. Within the realm where we intervene, we see our role as being very effective. Internationally, in much the same way you pointed out previously, it is perceived as a marked strength for Canada to have a standard-setting association of this type.

More specifically, on the issue of how that clarification could be brought about, I am not prescribing anything, but I am indicating that our members are not seeing a need for this at this time. It might be necessary for other groups in society. It is also important that we dissociate the issues that we have related in terms of ethical and other practice guidelines. Our own organizations are becoming much more aware of the necessity of getting the public involved in all that we do. Our activities are now conducted with the participation of lay members on our boards, our groups, and our committees, and they are contributing very strongly. This is certainly helping us along.

I do not have a final comment on which way we should go in terms of the Criminal Code. I have only brought forward our own opinion on this.

Dr. Crelinsten: This is not an easy situation to address. Much of what has to be clarified probably has more to do with the actual meaning of words than the operational organization of guidelines.

I was referring to the kind of guidelines that health care professionals use as clinical practice guidelines. They allow health care professionals, on the basis of evidence, to proceed in a way that is more likely to produce good results than bad ones.

These kind of guidelines, whether they are concerned with treating acute myocardial infarction, end-of-life issues, or complex cancers, are best established by the professionals who work in that area.

There is no doubt that Health Canada, as an arm of government, has a responsibility to facilitate those professional groups that should be required to prepare those guidelines and actually do the work, whether it be in spirit or financially. It may even be that they can facilitate the appropriate experts that the professional societies may require to improve their guidelines. However, the ultimate responsibility for the knowledge, skills and attitudes that are required to carry out those clinical practice guidelines that result in interactions between health care professionals and patients ought to reside with the professionals who are expected to operate by those guidelines.

I may now be speaking personally rather than as someone from an organization. The ultimate role for lawmakers and government is to establish for the professional organizations in this country a moral compass by which you measure the values of society, and we then operationalize them for you.

When we hear your values, we have difficulty operationalizing them, primarily because of issues which revolve around funding, human resources, and knowledge. That is what I meant with respect to guidelines being established by professional organizations, which also have a responsibility for self-governance and self-regulation and to ensure that they do the best thing, albeit with the strong input of the moral compass and the organizational structure that organizations such as Health Canada can provide.

Mr. Poston: My colleague from the CMA has eloquently pointed out that it is the role of the professions to develop the guidelines that will be used in the decision making of individual practitioners in the care of patients. However, Health Canada, along with the provinces, has an absolutely critical role in providing the structure, finance, and administration with respect to the health care system. In that way, the environment within which practitioners have to make those decisions and provide that care will be supportive and adequate to meet their needs.

One example of that is Health Canada's recent initiative with respect to the development of home care. It is a very good example, although it is an extremely difficult task. Home care is variable, fragmented, and financed through different mechanisms. However, it is an initiative in which Health Canada has a critical role to play in terms of facilitating and developing the process. Thus, we will be able to achieve greater harmonization with respect to the accessibility, the nature of services, and the funding that is available. As a result, individual practitioners will have an environment in which they can provide the standard of care that our patients deserve.

Senator Beaudoin: It is within the framework of the country, which is a federation. We have to fall within the Constitution and the division of powers. However, there are many ways in which there may be cooperation between Ottawa and the provinces. We are experts in that field. There is also the question of money and the famous spending power. If we have too much money, we may spend it for good reasons. I think health is one of those.

[Translation]

Senator Pépin: My approach is somewhat different and is based on my experience in the field. When I was a nurse and our medical specialists came, we had to apply the regulations. Clearly, they were the bosses in the department.

We told them often: "What you say is true, but when it comes time to apply the regulations, we should simplify some things, improve some practices. It would make it easier and we would have far less problems.". We are faced with the day-to-day activities of nurses who apply the palliative care regulations and we are faced with the experts who give us their advice.

I believe it will be very interesting to communicate again with you.

[English]

The Chairman: Ms Nield, you indicated that patients are being released back into the community "quicker and sicker", I think was your expression. I think we have all accepted that. My own experience is that they are released into the community, however, without much in the way of directives, without much in the way of support, and without much in the way of funding.

In your experience, what do you think is needed to make quality palliative care, which I think is available in many of our senior hospitals, available through a home care delivery system?

Ms Nield: What is needed is an integrated system in which the same kinds of services that are available in hospitals are available to someone in a home and community setting. That would include access to appropriate professionals, funding for drugs and treatments, and access to support both for the individual patient and the family members who are caring for that patient.

We hear today that home and community care is often off-loaded onto individual family members. I have with me a research report released by the Status of Women that indicates that there is a significant amount of off-loading for home care onto females. They, in turn, suffer in a variety of ways, including career development, health problems, and poverty.

In nursing, one of the issues that we have struggled with in the last decade is that the amount of professional development and education funding for nurses who generally work as employees has been cut dramatically. It is very difficult for nurses to increase their skills in palliative care and in home care.

The Canadian Palliative Care Association has a nursing committee that has asked us to develop a certification program for palliative care nursing as a specialty. Currently, there is no funding for that. The resolution of that issue would move this forward.

The Chairman: Mr. Poston, when you were presenting your information, I was concerned that you seemed to be indicating that your association does not believe that there is sufficient opiate treatment being made available to many patients in this country.

Mr. Poston: Since 1995, we have seen an improvement in the use of medications in palliative care. What is being reported to us -- and I think the evidence you received from the College of Family Physicians would echo that -- is that there is still a reluctance to provide adequate dosage by some physicians. That points to the need for ongoing training and education in the area.

The Chairman: In your experience, would that more likely happen in a home care setting than in a hospital setting?

Mr. Poston: It is more likely to happen in a home care or community setting, where physicians may not have received training. It really points to the need for education and training in that area, yes.

The Chairman: I think the profession has come to a realization that doctors' time is valuable time as well.

I congratulate doctors for finally deciding that they deserve some quality care time in their lives as well. Nobody can be a 24-hour physician, any more than you can be a 24-hour anything.

That leads us, it seems to me, into an increasing dilemma in our communities. If we are going to have more and more care delivered in the community, how are we going to restructure the time of physicians so that they will then be willing or able to deliver that service in the community, when most of their structure is built on the doctor's office and the clinical setting? I would suggest it is rarely, any longer, in the person's home. How are we going to change that dynamic?

Dr. Brazeau: The medical profession has already indicated that it is willing to take up that challenge. The references to the necessity for better integration of services, and to look at it in terms of the continuum of care, are important. In fact, the medical community comes together in a setting which is supported by the Canadian Medical Association, which is called the Canadian Medical Forum. That forum has looked at the issue of the current shortage of physicians in some specialities, but it is focusing even more on the need, at this time, to start thinking "out of the box" and to stop looking at issues in the same terms as in the past, as far as health care service organizations are concerned. We are starting to talk about needs.

It will not surprise anyone that in fact we have not, in terms of physician supply, looked at needs at any time in the past. We have been managing supply, essentially, and trying to use some surrogates in order to define need. We now must approach the issue of need more effectively. Fortunately, it appears that the methodologies to do that are now becoming available. In the past, they were not. We now need to focus, in the medical community and beyond, on how we can best work together, how we can best integrate the services, and how we can best provide the continuum of care. This will probably mean a different sharing of responsibility.

Physicians in our community have already sought our help in order to ensure that, in rural settings, for example, it becomes possible for physicians to acquire advanced skills, special skills, and to provide better care. This will require collaboration on the part of specialists. The Royal College is already on record that we will collaborate with the family physicians to accomplish that. That sets an example. The type of integration that we can perhaps accomplish within the medical community, which will go through further education and training, which will go through different sharings of responsibilities, is something that we can start looking at and modifying in terms of the relationships between different health care professionals. We are willing to do so, and we have started to take up that challenge. The medical community is doing it at the Canadian Medical Forum, which brings together all our different organizations.

Dr. Dinsdale: Part of what you raise is really the use of the physician's time. Here, in addition to interaction with other health care professionals, it is important for physicians to understand that the activities they undertake each day can be broken down into four different groups. There is the core diagnostic and treatment role, which they must play. There is a pastoral role, which sometimes gets confused in different aspects. There is a very heavy administrative burden put on many specialists in hospitals. We also expect many of these people to be doing research. These are four important areas, and physicians have to get it clear in their own minds which roles they feel are essential ones in an area where there is a great shortage of workers in the professional field. Interaction with other groups is extremely important, and obviously interaction with the nursing profession and social workers is key. People need to be clear as to what their role is.

Having said all that, it is my clear belief that, although we hear a lot about community care, community care really is care by the community. This is the great burden we are hearing about on women in our society as a result. I think we have to realize that this is a realistic result of the off-loading of care into the community. There just will not be enough health care professionals to deal with this, and in that sense, you need to look at some sort of relief, particularly for women in our community who are coping with this. There is a real domino effect in this process.

Ms Sholzberg-Gray: I know you directed your question to doctors, and of course they play an important role in providing all kinds of care, including end-of-life care, but we are talking about care in the community. We are not only talking about doctors, nurses, and social workers, but all the community supports that enable people to live in the community. That includes homemaker services and home-support services, which have not been alluded to up to now, and which could help families, particularly women, in their efforts to take care of people who are dying in their homes. We have to look at the multiplicity of services -- not just the professional ones, but the ancillary services that enable people to live in communities. We ought not to forget that. That is part of providing care across a broad continuum.

Senator Corbin: Mr. Poston made a statement that I find disturbing or unsettling. He said that, in some provinces, patients have been admitted to hospital in order to receive their medications free of charge. He also said that, when one considers that patients live longer and that their quality of life is greatly enhanced by spending their final days in their home environment, forcing them to be in hospital because medications are paid for seems counterproductive and somewhat inhuman.

How generalized is that practice and who is responsible for forcing patients into hospital?

Mr. Poston: I would say it is a fairly common feature of the Canadian health care system. Because drugs are not part of the Canada Health Act, patients end up being kept in hospital in order to get expensive drug treatment.

Senator Corbin: Because they are too poor or because their families do not want to pay?

Mr. Poston: Because drugs are not part of the Canada Health Act, they are not covered. The only coverage that you have for drugs in the Canadian health care system is provided through provincial drug benefit plans or through private insurance. This affects people who are not eligible for a provincial drug benefit plan. They may be unemployed, but this particularly affects the working poor because, while they may be employed, they may not qualify for drug plans provided to people receiving welfare or social assistance, and yet still may not be able to afford treatment. In some of the provinces, the deductible for drug treatment is as much as $1,700 before the provincial plan kicks in. It is a real problem.

Senator Corbin: Then you are compounding the problem of too many patients and waiting lists in hospitals for people who need important and direct medical intervention.

Mr. Poston: A very important part of the federal initiative around home care is to look at providing one of the things we strongly advocated for as an association, which is the provision of a pharmaceutical benefit as a part of whatever turns out to be the national home care initiative. If that were available, the decision to discharge a patient from hospital would not place the patient at risk of not having the drug therapy that they have perhaps been stabilized on in hospital. A very important plank of the development of home care and community care is to ensure that people have access to the appropriate medications.

Dr. Dinsdale spoke of the administrative burden that physicians face. A major administrative burden for pharmacists in the community, and for family physicians, is just sorting out access to medications. We have done a study that shows that as many as 70 per cent of new prescriptions written in Canada require additional administrative workload by the pharmacist, and often by the family physician, to determine what coverage that patient has. Our president was working in his pharmacy last week, and he had to transmit a drug claim six times for six different drugs. He was trying to find an antibiotic that was covered by a patient's drug plan, and with the physician waiting on the phone, he transmitted six claims on line before he found one antibiotic that the patient's plan was able to cover. That is a good example of the significant burden that community pharmacists and family physicians are facing in trying to deal with improving access to medications.

Senator Pépin: I have a question of clarification. Mr. Poston, you mentioned that caregivers should be free to refuse to give a specific treatment, but do you not think that then they should refer the patient to other doctors or to a palliative care centre?

Mr. Poston: Yes. Our code of ethics, and our recent national statement on refusal for care, have a requirement that that patient be referred to somewhere where they can gain access to that service or that product.

The Chairman: I thank you all very much. This has been a very informative session.

The committee adjourned.