Subcommittee to update "Of Life and Death"
of the Standing Senate Committee on Social Affairs, Science and Technology

FINAL REPORT

Chair: The Honourable Sharon Carstairs
Deputy Chair: The Honourable Gérald A. Beaudoin 

June 2000

MEMBERSHIP 

The Honourable Sharon Carstairs, Chair

The Honourable Gérald A. Beaudoin, Deputy Chair

The Honourable Senators:

* Boudreau P.C. (or Hays)
Corbin
Keon
* Lynch-Staunton (or Kinsella)
Pépin

* Ex Officio Members

The Honourable Senator Roche participated fully in all stages of the Subcommittee's work.

The Honourable Senators Kirby, Milne, Robichaud, P.C. (St. Louis de Kent), Robertson, and Roche also served on the Subcommittee at various stages or participated in its work.

Staff from the Parliamentary Research Branch of the Library of Parliament:

Mollie Dunsmuir and Nancy Miller Chenier, Research Officers 

Heather Lank
Clerk of the Subcommittee

Extract from the Journals of the Senate, Thursday, November 25, 1999:

Resuming debate on the motion of the Honourable Senator Carstairs, seconded by the Honourable Senator Mercier:

That the Standing Senate Committee on Social Affairs, Science and Technology be authorized to examine and report upon 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. In particular, the Committee shall be authorized to examine:

1. The progress on the implementation of the unanimous recommendations made in the report;
2. Developments in Canada respecting the issues dealt with in the report;
3. Developments in foreign jurisdictions respecting the issues dealt with in the report;

and

That the Committee submit its final report no later than June 6, 2000.

After debate, the question being put on the motion, it was adopted.

Paul C. Bélisle
Clerk of the Senate

_________________________

Extract from the Minutes of Proceedings from the Standing Senate Committee on Social Affairs, Science and Technology of Monday, November 29, 1999:

It was moved by Senator Carstairs - That a Subcommittee to Update "Of Life and Death" be established, comprising five members, including the Honourable Senators: Carstairs, Kirby, Pépin, Beaudoin and Keon;

That the Order of Reference adopted by the Senate on Thursday, November 25, 1999;

That the Standing Senate Committee on Social Affairs, Science and Technology be authorized to examine and report upon 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. In particular, the Committee shall be authorized to examine:

1. The progress on the implementation of the unanimous recommendations made in the report;
2. Developments in Canada respecting the issues dealt with in the report;
3. Developments in foreign jurisdictions respecting the issues dealt with in the report;

and

That the Committee submit its final report no later than June 6, 2000;

be referred to the Subcommittee.

That the Subcommittee be authorized to send for persons, papers and records, whenever required, and to print from day to day such papers and evidence as may be ordered by it;

That, pursuant to Section 32 of the Financial Administration Act, the Committee’s authority to commit funds be conferred on the Subcommittee;

That, pursuant to Section 34 of the Financial Administration Act and Guideline 3:05 of Appendix II of the Rules of the Senate, the Committee’s authority for certifying accounts payable be conferred on the Subcommittee; and

That the Committee’s power to permit coverage by electronic media of meetings be conferred on the Subcommittee.

The question being put on the motion, it was agreed.

Catherine Piccinin
Clerk of the Committee

TABLE OF CONTENTS

 THE SUBCOMMITTEE'S CONCLUSIONS

 INTRODUCTION 

PART I: THE NEED FOR A NATIONAL STRATEGY -- OUR PRIORITY

A. Quality End-of-Life Care: The Current Context
        1. End-of-Life in the Current Health Care System
        2. Specialized Training for End-of-Life Interdisciplinary Teams
        3. Research
        4. Guidelines

B. Achieving Quality End-of-Life Care
        1. A National Strategy
        2. Professional Training and Public Education
        3. Research
        4. Guidelines
        5. Advance Directives

C. The Federal Role in Quality End-of-Life Care
        1. Federal Involvement in a National End-of-Life Strategy
        2. Federal Health System Funding Initiatives
        3. Federal Research and Information Dissemination Efforts

PART II: REPORT CARD 2000 -- PROGRESS ON THE UNANIMOUS 1995 RECOMMENDATIONS FROM OF LIFE AND DEATH

A. Palliative Care
B. Education and Training
C. Research
D. Guidelines and Standards
E. Advance Directives
F. Legislative Initiatives

LIST OF RECOMMENDATIONS FOR QUALITY END-OF-LIFE CARE

APPENDIX I: UPDATE 2000

A. Palliative Care in Canada - Provincial Update
        1. British Columbia Ministry of Health and Minister Responsible for Seniors
        2. Alberta Health and Wellness
        3. Saskatchewan Health
        4. Manitoba Health
        5. Ontario Ministry of Health and Long-Term Care
        6. Quebec Ministry of Health and Social Services
        7. New Brunswick Health and Wellness
        8. Nova Scotia Department of Health
        9. Prince Edward Island Health and Social Services
        10. Newfoundland and Labrador Department of Health and Community Services

B. Major Canadian Developments and Events in End-of-Life Health Care Since 1995

C. Legislative Proposals Introduced in Parliament in Response to the Unanimous Recommendations

D. Citations for Advance Directives Legislation in Canada

E. Sources for Sample Directives

APPENDIX II:

A. Witnesses Appearing Before the Subcommittee

B Brief Submitted to the Subcommittee

C. Materials Received by the Subcommittee

APPENDIX III: TERMINOLOGY

 QUALITY END-OF-LIFE CARE:
THE RIGHT OF EVERY CANADIAN

Unfortunately, in end-of-life care, we do not have a vocal constituency: The dead are no longer here to speak, the dying often cannot speak, and the bereaved are often too overcome by their loss to speak.

(Harvey Chochinov, testimony before the Subcommittee, February 28, 2000)

 

THE SUBCOMMITTEE'S CONCLUSIONS

As set out in the 1960 Canadian Bill of Rights, Canada is founded upon the dignity and worth of the human person. That dignity and worth compels the provision of excellent end-of-life care at a time when each person is at his or her most vulnerable.

Quality end-of-life care must become an entrenched core value of Canada's health care system. Each person is entitled to die in relative comfort, as free as possible from physical, emotional, psychosocial, and spiritual distress. Each Canadian is entitled to access skilled, compassionate, and respectful care at the end of life. This Subcommittee sees care for the dying as an entitlement for all.

Calls for a more compassionate and comprehensive approach to end-of-life seem to be assigned a low priority in the existing health care system. Thus, in spite of statistical evidence indicating an increase in the numbers of total deaths and acknowledged changes in demographics, disease patterns, and health care institutions, there has not yet been the required shift of resources to end-of-life care.

The Subcommittee sees the emergence of quality end-of-life care as the key mechanism for improving the care of the dying, including:

• service delivery by interdisciplinary teams;
• access to services in the most appropriate location;
• availability of services when needed, whether for a few hours or around-the-clock;
• availability of services before death is imminent;
• services for a broad-based clientele, both with respect to cultural background and type of illness;
• awareness and skill in pain and symptom management; and
• support for caregivers and family members.

The Subcommittee believes that such quality end-of-life care will not happen unless the federal government takes a leadership role in developing a national end-of-life care strategy. To ensure that quality end-of-life care becomes a core entitlement for all Canadians, the Subcommittee recommends:

INTRODUCTION

The Subcommittee to Update Of Life and Death was authorized to examine and report upon developments in end-of-life care in the five years since the tabling of that report. In particular, the Subcommittee studied the progress made on implementing the unanimous recommendations made in the 1995 report of the Special Senate Committee on Euthanasia and Assisted Suicide with respect to palliative care, pain control, sedation, withholding or withdrawing life-sustaining treatment, and advance directives. The Subcommittee chose to use the same terminology defined in the 1995 Report, and relevant definitions can be found in Appendix III to this report.

From the start of this endeavour, the Subcommittee heard repeated calls from witnesses for more and better end-of-life care for all Canadians. As the Subcommittee examined the progress in implementing the unanimous recommendations in the 1995 report, it realized that the principles, expertise, and medical infrastructure required for the care of people facing death were evolving far too slowly. Inadequate federal and provincial collaboration, deficient allocation of resources, and insufficient attention to the end-of-life health care needs of Canadians were some of the contributing factors.

Within the parameters set by the Constitution, the Subcommittee sees a place for active partnership by all levels of government in establishing a higher priority for quality end-of-life care. For example, there are already several working committees that cut across jurisdictional boundaries. Quality end-of-life care should be available to every Canadian who needs it.

The respective roles of federal and provincial governments loom large in any discussion of health matters. End-of-life care is no exception. Constitutionally, the provincial governments have wide powers to regulate local health matters and this gives them the primary role in the delivery of health care services. The federal government gains its authority through more general powers, such as the criminal law (including public health and safety) and the spending power. Additionally, it has specific responsibility for certain groups, including Aboriginal peoples, military personnel and veterans, and inmates in federal correctional institutions. Under the Constitution Act, 1867 provincial governments have jurisdiction over hospitals (section 92(7)), property and civil rights within the province (section 92(13)) and matters of a local or private nature in the province (section 92(16)).

The Subcommittee's hearings took place during a time of continuing debate about the future of the Canadian health care system and how it should be funded. The Subcommittee understands the complexities of the dual jurisdiction over health care, but it has also been clearly told that Canadians value their health care system, and want to see inter-governmental cooperation, rather than intransigence, to ensure that excellent health care remains an entitlement of each Canadian. A core aspect of this entitlement must be the right to expert, compassionate, and interdisciplinary care at the end of life.

The Subcommittee believes that, as Canadians, we will afford what we value.

A. Quality End-of-Life Care: The Current Context

Of Life and Death defined palliative care as "care aimed at alleviating suffering - physical, emotional, psychosocial, or spiritual - rather than curing." Partially because palliative care has been too narrowly associated with the specific diseases of cancer, a move towards the more encompassing term "quality end-of-life care" is apparent and appropriate. The Subcommittee believes that this includes adequate pain and symptom control, appropriate use of life-sustaining treatments, and support for patients and their families. Quality end-of-life care expands the concepts of palliative care to include all end-of-life situations.

Regrettably, the Subcommittee heard that many of the unanimous recommendations had not been implemented. It heard instead about a possible crisis in end-of-life care. There was evidence of uneven provision of services, and disruptive and ineffective care leading to substandard outcomes. Access to, and the successful delivery of, quality end-of-life care, where it exists, was described as the "luck of the draw" rather than as a basic entitlement. While there was evidence of some progress within the health care professions, governments had not significantly addressed the issue of quality end-of-life care for a variety of reasons, including funding cutbacks.

Statistics indicate an increase in the number and percentage of deaths in Canada, the growth of the ageing population with long term chronic diseases, and rising rates of diseases such as cancer, AIDS, and cardiovascular impairment in the general population.

There is an absence of counter measures to address the situation: no equivalent increase in palliative programs; no evidence of dedicated public funding for palliative care services; no effective strategy within Health Canada; and no action with respect to groups under federal jurisdiction such as Aboriginal peoples, defence personnel, and the inmates of penitentiaries. Coordination between federal and provincial governments seems minimal. There are individuals with the necessary training and expertise to design appropriate programs, and it is inexcusable that these programs do not yet exist.

The current situation described to the Subcommittee with respect to death, diseases and palliative care is as follows:

• Over 220,000 Canadians die each year.
• 75% of all deaths occur in people over 65 years of age.
• 75% of the deaths take place in hospitals and long-term care facilities.
• Each death potentially affects the well being of an average of five other people.

• An estimated 5% of dying Canadians receive integrated and interdisciplinary palliative care.
• About one quarter of the total deaths in Canada are related to cancer, but cancer patients account for more than 90% of those receiving palliative care.
• The number of institutional palliative care beds has been cut as result of health care restructuring.
• Few provinces have designated palliative care as a core service with a specific budget.

• People are receiving significantly different treatment in various institutions across the country.
• People over 65 years of age are less likely than younger people to want to die at home.
• Rural residents have considerably less access to palliative care than the residents of large urban areas.
• Most of the costs and other burdens of homecare are assumed by the family.
• Palliative care relies disproportionately on charitable donations for survival.

The Subcommittee realizes that it is difficult to advocate end-of-life care, which emphasizes relief of suffering, in a medical and social culture that strives for cures. However, care of the dying has to evolve in line with such variables as changing demographics, shifting disease patterns, and the restructuring of the health care system. There must be a greater emphasis on palliative care principles within the context of quality end-of-life care.

The integrated approach to end-of-life support is crucial, and goes beyond the physical to encompass psychological, social, emotional, and spiritual needs. Consistent with the 1995 report, the Subcommittee identified several goals necessary to achieve quality end-of-life care, including:

• integration of end-of-life care within the health care system;
• specialized training;
• increased research; and
• the ongoing development of guidelines.

The following sections provide an overview of the current situation with regard to each of these factors.

1. End-of-Life in the Current Health Care System

Currently, health insurance coverage for the health care needs of Canadians is financed by both provincial and federal governments. The provincial governments are responsible for the design and delivery of health care in a manner compatible with the national standards codified in the federal Canada Health Act.

Physicians who provide palliative care are generally paid on a fee-for-service basis for work conducted primarily in private homes, hospitals, and nursing homes. Other professionals who form part of a palliative care team, such as nurses and social workers, are usually paid by salary. New approaches are necessary in order to eliminate the paralysis that can occur because of such different payment methods.

Palliative care in hospitals is usually paid for by a provincial health plan, which typically covers professional care and drugs, medical supplies, and equipment while the person remains in the hospital. Some hospitals designate a specific inpatient palliative care unit of acute care hospital beds to provide speciality care for terminally ill patients with complex needs, while others set aside individual beds within different sections of the hospital for people needing palliative care.

In long-term care facilities, however, residents may be required to pay varying amounts for their care and supplies. Long-term, chronic, or continuing care facilities, such as nursing homes, may offer palliative care consultation services but are less likely to have specialized palliative care units. Residents of such facilities who need more specialized palliative care services may need to seek hospital admission. In continuing care centres/hospices, there is usually a daily room and board fee, and most operate with insufficient or no provincial funding support.

Selected aspects of home-based palliative care may be paid by the provincial health plan as part of a homecare program, but these plans do not always include the cost of drugs and equipment such as pain pumps, oxygen, and commodes used at home, forcing some to seek admission to hospital. Some plans pay for only a limited number of hours of professional and home support services. Consequently, people may need to use private insurance, personal savings, or contributions from social agencies and service clubs to cover costs.

2. Specialized Training for End-of-Life Interdisciplinary Teams

Quality end-of-life care involves an interdisciplinary team, including physicians, nurses, pharmacists, social workers, and pastoral caregivers. Appropriate education and training are crucial for all members of the interdisciplinary end-of-life care team.

Few universities or community colleges in Canada presently offer palliative care training programs. If they do, these programs can result in an undergraduate or graduate degree, a certificate, or a diploma. Universities occasionally offer individual courses relevant to palliative care as part of a larger faculty program, usually in the area of health sciences, such as medicine and nursing, or through the social sciences, such as sociology or psychology.

Some colleges and universities offer certificate programs that have a variety of mandatory multidisciplinary courses together with one or two electives. Offered on a full-time or part-time basis, these programs are aimed at increasing the knowledge of professionals currently working with terminally ill individuals. Despite the above, the health science community is not sufficiently coordinating its training resources for the care of the dying.

3. Research

Increased research and greater dissemination of findings is necessary to assist in articulating values, in assessing technological interventions, and in developing innovative service delivery. To be useful in providing new insights, such research should involve collaboration across disciplines and encourage researchers to develop innovative approaches.

There is presently a disturbing lack of research into end-of-life care and related issues, including data collection, surveillance, and ongoing monitoring related to various end-of-life situations, studies into the effectiveness of certain medical and non-medical interventions, measures of appropriate and cost-effective health care services, and analysis of demographic, geographic, cultural, and other variables.

4. Guidelines

Ethical guidelines, in conjunction with clinical practice guidelines, are essential to quality end-of-life care. Ethical guidelines, based on the inherent dignity and worth of the individual, provide a base for actions within a specific cultural and religious structure. Clinical practice guidelines encourage all caregivers to apply standardized and effective ways of intervening in a clinical situation.

In general, discussions about ethics are guided by certain principles, such as autonomy, beneficence and justice. Autonomy generally encompasses self-determination, personal liberty and freedom of choice. Justice refers to the overall question of fairness, of equitable distribution of scarce resources. Beneficence seeks to ensure that any intervention is for the benefit of the patient and not for experimental, economic, or other reasons. The trend is away from an ethic of prolonging life at all costs and toward an ethic that emphasizes the quality of life and of dying.

Guidelines for clinical practice are important for several reasons: they limit variations in practice that may signal problems in the quality of service; they eliminate or reduce unnecessary costs associated with variations in practice; they influence the scientific direction of health care practice; they identify evidence-based "best practices"; and they help to educate the public about the risks and benefits of procedures.

B. Achieving Quality End-of-Life Care

Witnesses offered many suggestions for implementing, clarifying, updating, or enhancing the 1995 unanimous recommendations, which continue to provide a solid basis for progress. These recommendations and comments are the foundation of the following sections.

1. A National Strategy

Witnesses consistently called for the development of a national strategy for end-of-life health care, perhaps including a requirement that Health Canada provide an annual progress report on the national status of quality end-of-life care. Such a national strategy would include widely accepted core principles. As well, there would be a coherent conceptual framework for quality end-of-life care, encompassing common standards, clinical guidelines, uniform information collection and dissemination, optimal use of technology, and standardized assessment tools. Witnesses repeatedly emphasized that end-of-life care must be extended both in terms of the diseases covered, and the period of time for which it is provided.

Witnesses emphasized the need for integrated, accessible, and adequately funded services that could support patients and families in varied institutional and home settings in rural and urban communities. Expanded and properly funded end-of-life home care services should include: financial coverage for drugs and both professional and non-professional care services; access to community day programs and 24-hour pain and symptom management teams; and support for families such as respite care and bereavement follow-up. End-of-life care should be interdisciplinary and skilled, and include community participation in the planning, implementation, and evaluation of programs and services.

Although various sites for delivery of services were discussed, some witnesses suggested that any health care facility, including hospitals, long-term facilities, and community care facilities, should demonstrate appropriate standards in end-of-life care as a mandatory condition of accreditation.

Witnesses advocated treatment modes employing holistic pain and symptom management, and moving beyond the pharmacological dimension to providing psychosocial, emotional, and spiritual comfort. Several witnesses stressed the need for adequate diagnosis of, and treatment for, clinical depression.

Witnesses also identified certain populations as having particular palliative care needs. The examples they gave included: the lack of access experienced by people living in rural and geographically isolated areas; the need to incorporate traditional approaches for Aboriginal peoples; the requirement that palliative care be provided in a manner appropriate to the condition and personal wishes of people with disabilities; and the absence of services in federal penitentiaries for inmates living with cancer and AIDS.

2. Professional Training and Public Education

Witnesses talked of end-of-life care professionals, such as physicians, nurses, social workers, pastoral care workers, physiotherapists, occupational therapists, nutritionists, pharmacists, respiratory therapists, and psychologists, and of the need to develop a clear, effective, and mandatory curriculum on end-of-life care. They suggested that all training facilities and licensing agencies should ensure that there is sufficient competency in end-of-life care. Some witnesses suggested that the ability to meet established standards in end-of-life care should be a condition of certification or licensing. Other witnesses stressed a role for the larger community in curriculum development and the evaluation of educational endeavours, thereby improving communication between the public and the health care community

Within this curriculum, several witnesses called for education with respect to pain control and sedation as an alternative to legislation clarifying the legality of alleviation of pain. They wanted expanded knowledge that focused on chronic diseases such as end-stage heart disease and lung disease, musculoskeletal disease, neuromuscular disease, and others. They sought assurances that teaching would cover the complexities of multiple palliative care settings, not only institutional but also urban and rural community care. Some noted that palliative care education must cover the treatment of children as well as adults.

3. Research

For witnesses, decisions about end-of-life care, as in other areas of the health system, required access to good health data in order to document the level of resources consumed and the benefits produced. This includes surveillance data, empirical research, and dissemination actions. Witnesses noted that the current collection of data is not coordinated or coherent. Definitions and concepts are not consistent among provinces, and systems for collecting and synthesizing data are not compatible.

There were calls to launch an end-of-life research strategy involving designated funding levels with federal and private partnership. Some witnesses suggested that this should include the provision of financial incentives and research networks to attract and support researchers.

Witnesses suggested several prerequisites to conducting systematic, continuing collection of data on end-of-life care at the national level. They saw a need for: consensus-based definitions and standards; data on trends in public and private services; information on the development of and effectiveness of services; and greater access to and sharing among separate federal and provincial databases. As well, witnesses wanted better measures of rural and urban differences in the delivery of end-of-life care. They suggested that the Canadian Institute for Health Information, along with Statistics Canada, be encouraged to develop population-based indicators of quality end-of-life care.

4. Guidelines

Witnesses agreed that the federal government must be committed to end-of-life care that reflects the values and assumptions of Canadians. The challenge is to ensure that decisions are based on a clearly understood and broadly accepted set of principles or guidelines. Some witnesses suggested ethical values to guide health policy decisions, including: equality of access, compassion, efficiency and effectiveness, collective and personal responsibility, accountability, and quality.

Some professional groups strongly felt that the responsibility for guideline and standard development in areas such as the alleviation of pain, the practice of total sedation, and the withholding and withdrawal of life-sustaining treatment should not be left only with government, which has neither the appropriate expertise nor the requisite credibility in the area of clinical practice. They did, however, note the importance of communicating with the public, and accepted a supportive role for Health Canada.

5. Advance Directives

Witnesses stressed that advance directives, whether instruction directives (telling the physician what types of treatment the patient does or does not want) or proxy directives (designating a certain person to make the patient's medical decisions), should not be viewed as purely legal documents. Whether people give too little or too much detail in their advance directives, there may well be interpretation problems, with physicians and family members sometimes disagreeing on the meaning. Most people do not update their advance directives, and family members may feel that a dated advance directive does not reflect the patient's current thinking. Sometimes medical staff may not be aware that an advance directive exists, although witnesses recommended the use of a wallet-sized card or bracelet to signal the existence of an advance directive.

Most of these problems are associated with the traditional view of advance directives as based on the principle of the patient's autonomy, and the witnesses noted that advance directives are now best seen as part of a planning and communication process that helps people prepare for death in the context of their loved ones. The preparation of an advance care directive can facilitate discussions between people and their family, and provide guidance and support for substitute decision-makers who must make the difficult decisions regarding life-sustaining treatment. If loved ones and medical professionals have engaged in a process of serious communication, the problems associated with the interpretation and application of advance directives are much less likely to arise. The passage to death is eased, the level of comfort rises, and the burden of care is lightened for the substitute decision maker.

C. The Federal Role in Quality End-of-Life Care

The Subcommittee acknowledges the separate and sometimes overlapping federal and provincial jurisdictions involved in its study. It also recognizes that health care is at the centre of a wide-ranging national debate on social priorities. However, this Subcommittee emphasizes that all Canadians are entitled to continuing quality health care up to the moment of death. In 1998, at a meeting of federal, provincial, and territorial health ministers, all governments made a commitment to give priority to continuing care.

To ensure that end-of-life care emerges from the current health care restructuring as a core service available to all Canadians, the Subcommittee supports a leadership role for the federal government. The federal government’s current role has several dimensions:

• through funds transferred to the provinces via the Canada Health and Social Transfer (CHST), it contributes to a national health care system;
• through health surveillance activities, it anticipates and responds to diseases and other health-threatening conditions;
• through information and research efforts, it generates data and increases knowledge about health systems and health status;
• through ongoing initiatives aimed at population health, it seeks to understand influences on the health of individuals and communities across the country; and
• through direct work with First Nations and Inuit, active and veteran members of the Canadian military, and inmates under federal authority it aims to address the health needs of populations under its direct jurisdiction and to ameliorate any inequitable health outcomes.

Within the federal health framework, the focus has shifted to initiatives supported by strong evidence of effectiveness, using a "life stages" approach including end-of-life issues; and encouraging coordinated, horizontal action among federal departments. Horizontal action refers to an integrated approach by all relevant federal departments, rather than an isolated vertical approach by separate departments.

There have also been efforts to identify clearly the values held by Canadians and to link these to the effect of the health care system on individual families, which exist in diverse forms and within various social and ethnic communities. In addition, there is a recognition that various determinants or influences make the experience of dying different for different cultural groups.

1. Federal Involvement in a National End-of-Life Strategy

The Subcommittee envisions three components of the national strategy to address end-of-life care:

• a short term action plan to be implemented immediately by the federal government;
• an integrated horizontal strategy at the federal level, involving all relevant departments with broad responsibilities to the Canadian population or with specific responsibility for groups such as First Nations and Inuit, veterans, military personnel, and inmates in federal correctional institutions; and
• a federal, provincial, and territorial strategy involving the Conference of Ministers of Health and/or the Conference of Deputy Ministers of Health.

The Short Term Action Plan

There are several areas where immediate efforts could yield results beneficial to the dying and their families. The Subcommittee strongly feels that the Canada Health Act should encompass home care and pharmacare as essential medical services, together with the additional funding necessary to support these services. There must be a full examination of ways to achieve this goal.

As part of the national strategy on end-of-life care, the Subcommittee recommends:

As well, the Subcommittee strongly encourages the federal government to study how family members who leave their jobs to care full time for a dying relative could be given income assistance, or income and job security, through changes to existing federal employment and taxation programs. Programs like those currently available for parental support could provide a starting point. The necessary changes to accomplish this objective must be undertaken at once.

As part of the national strategy on end-of-life care, the Subcommittee recommends:

The Subcommittee recognizes that the Canada Health and Social Transfer (CHST) as a block fund covers the area of post-secondary education along with health and other social programs. It heard that the health sciences community, and others involved in end-of-life care, have not made significant progress in education and training. The Subcommittee clearly sees the area of post-secondary education in end-of-life care as one that needs a coordinated approach by the provinces in partnership with the federal government.

As part of the national strategy on end-of-life care the Subcommittee recommends:

The Integrated Horizontal Strategy

With Health Canada as the lead department, an interdepartmental strategy could involve the following departments:

• Finance Canada, with respect to health system financing and to possible taxation measures to help individuals and family caregivers;
• Human Resources Development Canada, with respect to studying income support and other programs for family members caring for the dying;
• Indian and Northern Affairs Canada, with respect to social supports in end-of-life care for Aboriginals under federal jurisdiction;
• National Defence, with respect to active military personnel facing an end-of-life situation for themselves or their families;
• Veterans Affairs Canada, with respect to its health benefits program for eligible veterans; and
• Correctional Services Canada, with respect to end-of-life care for inmates within correctional institutions or after release into the community.

To facilitate a coordinated approach to the national strategy on end-of-life care, the Subcommittee recommends:

The Federal, Provincial and Territorial Strategy

A federal, provincial and territorial strategy should be developed through the Deputy Ministers, who meet twice annually, and who currently have four main advisory committees focusing on population health, health services, health infrastructure and health human resources. The Subcommittee heard from Health Canada that there have already been several unconnected policy efforts that focused on health care factors relevant to end-of-life care such as homecare, continuing care, data collection and surveillance.

To promote a collaborative movement toward the national strategy, the Subcommittee recommends:

2. Federal Health System Funding Initiatives

The Subcommittee believes that the value placed by Canadians on the end stage of life will ultimately affect the way that health care resources are allocated. Because costs and values are interconnected in our approach to our health system, the Subcommittee feels that, as a country, we will fund end-of-life initiatives because we recognize their importance. However, Canadians in the process of dying cannot wait indefinitely for the health care system to incorporate quality end-of-life care. The Subcommittee cannot stress too strongly the urgency of developing quality end-of-life care for individuals and their families.

The Subcommittee is fully aware that the provision of health care services are a provincial responsibility. The federal government does not generally provide institutionally based health care services, except for those communities under federal jurisdiction. However, the Subcommittee is also very aware that in February 1999 First Ministers gave unanimous agreement to a Health Accord, negotiated in the context of the Social Union, that supported the commitment to the priority areas of homecare, continuing care, and community-based care. Under the Health Accord, the provinces and territories agreed to devote any increase in the 1999 federal budget for CHST health funding to health care priorities in their respective jurisdictions. The federal spending power was essential to the development of the Canadian health care system, and can still be used to promote Canada-wide objectives.

In keeping with this federal, provincial and territorial agreement, the Subcommittee recommends:

3. Federal Research and Information Dissemination Efforts

At the federal level, health research funding has been significantly altered with the development of the Canadian Institutes of Health Research and the Canadian Health Services Research Foundation. In addition, Health Canada, through its $150-million Health Transition Fund, has supported numerous large-scale pilot projects aimed at innovations in palliative care specifically and in pharmacare and homecare more generally. Current research efforts both inside Health Canada and through outside research bodies have the potential to contribute to our understanding of end-of-life decisions, treatment modes, and individual and family needs.

The Subcommittee understands that information can be a tremendous driver for change and that there are ongoing efforts to create data collection and tracking systems and also to implement methods for disseminating the accumulated knowledge. Currently, however, data collection on end-of-life care is not coordinated, and there are inconsistencies of definitions, concepts, and systems. However, federal efforts to develop, in collaboration with the provinces, an integrated Canadian health information system are moving forward. In addition, the federal and provincial support for the Canadian Institute for Health Information ensures that there is an ongoing effort to collect data for health system management and for health indicator measures.

To advance our understanding of end-of-life care, the Subcommittee recommends:

The Subcommittee wishes to make note of the thousands of volunteers who provide palliative care and to them we extend our heartfelt thanks.

Overall, progress on the 1995 unanimous recommendations has been insignificant or non-existent. For this reason alone, the Subcommittee recognizes the need for strong federal leadership and recommends a coordinated and intensive national strategy. It also became obvious to the Subcommittee that, in the five years since these unanimous recommendations, the whole area of end-of-life care has evolved into something broader and more inclusive than the earlier focus on palliative care.

Although there has been movement conceptually in this area, the Subcommittee still sees the need for action on all of the areas identified in the 1995 report. Therefore, within the context of the national strategy on end-of-life care, the Subcommittee recommends:

The federal government should make the five-year plan and annual reports available on its departmental website, in addition to the printed version.

The following sections deal with the 1995 recommendations in six subject areas: palliative care, education and training, research, guidelines and standards, advance directives, and legislative initiatives. The commentary contained in each section is a synthesis of statements by witnesses. The Subcommittee asked witnesses to provide an update from 1995 and to report their perspective on actions taken or not taken on the unanimous recommendations. At times witnesses commented on individual recommendations, and at other times they commented more generally. Our grouping of comments attempts to recognize this.

Witness Commentary: Overview

There is no national strategy on palliative or end-of-life care, and no provinces have made palliative care a top priority. In addition, there is no effective inter-departmental strategy, or even intra-departmental strategy within Health Canada. Very little palliative care is provided on First Nations reserves, in military hospitals, or in federal penitentiaries. There have instead been sporadic efforts to address palliative care at the federal, provincial and territorial levels, as well as at Health Canada. In all areas, funding and the allocation of resources are seen as the crucial issue.

Witness Commentary: Federal, Provincial, and Territorial Level

In September 1998, all health ministers identified continuing care, which encompasses home and community care and institutionalized long-term care, as one of their key priorities for collaborative action. This was reaffirmed in September 1999.

After the 1998 commitment to continuing care, Health Canada worked with provincial and territorial counterparts to identify possible directions and priorities for enhancing services. It is preparing a detailed overview of current home and community care programs that will include a focus on palliative care.

The federal-provincial-territorial advisory committee on health services and the federal-provincial-territorial working group on continuing care are two examples of cross-jurisdictional work.

Witness Commentary: Health Canada

After Of Life and Death was published in 1995, Health Canada established an inter-branch committee to assess action on the recommendations.

For First Nations on reserve and for Inuit communities, a new $90 million per year program of home and community care will begin in 2002-2003. This could include palliative care options for those who die at home. Other First Nations and Inuit access palliative care programs through provincial and territorial health services. The Non-Insured Health Benefits, available to all First Nations and Inuit without residency or income restrictions, covers pharmaceuticals prescribed for pain or other symptoms. There is also a manual on palliative care for Aboriginal people with HIV/AIDS. A pilot project in Manitoba works with seriously ill First Nations children and organizes 24-hour support services in their home communities.

Health Canada terminated the operational funding for the Canadian Palliative Care Association previously available through the National Voluntary Health Organizations Program. Prior to the termination, Health Canada provided $338,000 between 1995 and 2000.

Health Canada has provided developmental support for HIV/AIDS community programming and for hospice palliative care.

Witness Commentary: Provinces

Palliative care exists as a patchwork quilt across the country. Access varies from region to region, with significant differences between rural and urban communities. Many people are unable to access palliative care because the closest hospital may be understaffed and overburdened, because there is no home care support, because they have been given the wrong diagnosis, or because death is not imminent.

Health care remains focused on hospital care, and many acute care hospitals lack the basic funding to maintain core palliative care teams. The number of palliative care beds has been cut as a result of health care reform.

Home care is variable, fragmented, and financed through different mechanisms. There are few consultation teams available for home or long-term care situations and minimal community hospice services to provide visiting volunteers, day programs, and respite for families. The delivery system for service allocation is too rigid for the 24-hours-a day care required by terminally ill people at home.

Care in the community and the home is often off-loaded onto individual family members, with women shouldering a major portion of the care. This can result in health problems, stunted career development, and poverty. There is no provision at the federal level to protect family members, either fiscally or through security-of-income legislation. Respite care is rare, and caregiver burnout leads to rehospitalization.

Provincial drug plans often depend on the patient’s age and financial status. Where there are high deductibles (as much as $1700) or co-payments, patients have to consider whether they can afford medication for symptom control. Some patients sacrifice treatment for fear of leaving their dependants destitute. Some are admitted to hospital only so that they can receive the necessary medications without charge. Some drug plans will not cover specific dosages of narcotics.

Many provinces have policies limiting the number of hours for which nursing care and homemaker support is available. Even comprehensive private insurance plans can be overly rigid in specifying service provider coverage (i.e. nurse coverage when a homemaker is needed).

A more detailed discussion of palliative care in individual provinces can be found in Section A of Appendix I.

• The training of health care professionals in all aspects of palliative care be increased.

Witness Commentary

Palliative care requires collaboration among service providers, is delivered across multiple settings, extends beyond cancer to chronic diseases, and thus involves unique education and training challenges.

At present there is no consistency in whether undergraduate medical students receive palliative care training, or in what format. Some post-graduate medical programs have mandatory palliative care rotations, but teaching is inconsistent. Training medical students to function as a team is rare. As for continuing medical education, there are a few sporadic and underfunded palliative care initiatives. Recently, the University of Toronto launched the Ian Anderson program on end-of-life care. Funded by a $1 million donation, it aims to train 10,000 physicians in palliative care principles over the next five years.

There is a new one-year post-graduate program of added competence in palliative care that is jointly accredited by the College of Family Physicians of Canada and the Royal College of Physicians and Surgeons of Canada. Seven of the 16 medical colleges have applied for this new program; Alberta, Manitoba, McGill, and Laval have been approved, while McMaster, Ottawa, and Montreal are under review. Unfortunately, there is no specific funding for salaries for residents or for infrastructure support, and a resident's salary for one program year costs over $40,000. Even if each faculty produces two specialists a year, it will be a long time before there is a critical mass of expertise.

A 1996 survey showed that only 18 physicians in Canada were supported by their medical school for palliative care work.

A minority of nursing, social work, pharmacy, psychology, and other health care programs offer palliative care training. There is limited continuing education, and the interdisciplinary approach is not taught. There is not yet a certification program for palliative care nursing as a speciality because there is no available funding.

Health Canada, in conjunction with the Canadian Palliative Care Association and the Canadian Association for Continuing Care, has developed a national palliative care training package for health support workers.

Witness Commentary

There is little curriculum in medical schools for pain and symptom relief. The Canadian Palliative Care Education Group surveyed students at McGill and the University of Alberta, and found that only 3 students out of 110 thought that their pain management teaching experience was excellent.

Increased knowledge with respect to pain control and sedation has led to a greater willingness to use such medications in the care of the terminally ill. However, fear of the possible consequences among physicians, often reinforced by family members, still inhibits proper drug use, unnecessarily increasing suffering at the end of life. The Royal College of Physicians and Surgeons acknowledged its responsibility to influence this through accreditation, certification, and professional development of specialists. Pharmacists, in their role as drug experts, work with other professionals to develop protocols allowing adjustments to the dosage of pain medications.

Witness Commentary

Health care consumers need to be more aware of their treatment at the end of life. Health Canada has tried to disseminate information to the general public through various avenues, including a palliative care information sheet for seniors, and a symposium on trends and issues in palliative care in the provinces and territories.

• Research into palliative care, especially pain control and symptom relief, be expanded and improved.

Witness Commentary

Obstacles to palliative care research include: ethical concerns about involving dying persons and their families in the research process; the absence of adequate and specific funding; the lack of trained researchers; and the absence of relevant, practical and validated outcome measures.

The Canadian Palliative Care Association has developed an agenda for palliative care research through consultation with the public, caregivers, and researchers. Although there was significant private-sector interest, federal funding was not available. Negotiations with Health Canada to develop the project further were protracted and ultimately unsuccessful.

The major research funding agencies, such as the Medical Research Council (MRC) and the National Cancer Institute of Canada (NCIC), have contributed a tiny fraction of their funding to palliative care research. One estimate identified only six MRC grants over five years. The MRC acknowledged its underfunding of palliative care research, but pointed to current funding of $16 million in end-of-life projects, ranging from pain management to the psychosocial effects of chronic diseases. The NCIC distributed an estimated $500,000 to end-of-life projects. It recently collaborated with the Canadian Cancer Society to provide $60,000 per year of infrastructure funding to a national network of palliative care programs and allocated money to study the issue of dignity among the dying.

Estimates suggest that Health Canada has funded some 25 projects, for a total contribution of about $7 million. Through the National Health Research Development Program (NHRDP) about $1.2 million has been spent since 1997 on research synthesis projects on end-of-life and palliative care or on individual scholar awards looking at pain management and psychosocial issues. Through the Cancer Bureau, six palliative care programs are developing standards and common definitions for data collection, as well as determining the feasibility of collecting systematic information for palliative care. Through the 1997 Health Transition Fund, with $150 million over three years, several projects related to palliative care in home care and integrated service delivery have been initiated.

There is currently no systematic way to determine what is happening in palliative care across Canada. There is no single tracking system, no national database, and no provincial-level databases. Data systems at Statistics Canada, the Canadian Institute for Health Information, and Health Canada are not organized consistently across the continuum from institutional care to community care to home care. However, the Canadian Institute for Health Information is currently working with national groups on a facility and home-based continuing care project that includes indicators related to palliation.

The Canadian Institutes of Health Research does not currently support an end-of-life or palliative care research institute, but it could potentially do so within its four-way focus on biomedical research, applied clinical research, research into health services and systems, and research into societal and cultural determinants of health.

Witness Commentary

No such study has been done, and the context surrounding this recommendation has changed somewhat over the past five years. Total sedation is now more often referred to as "sedation for intractable distress in the dying", and it is an accepted part of pain management.

Witness Commentary

The recommended legislation and guidelines were not put in place, so no such research was possible.

• Research be undertaken into how many are requesting euthanasia, why it is being requested, and whether there are any alternatives that might be acceptable to those who are making the requests.

Witness Commentary

Research has linked depression to a desire to hasten death and there is a particular need for evaluative research to determine the effectiveness of interventions and programs that may reduce any desire for a premature death in the terminally ill.

Direct empirical research into euthanasia and assisted suicide is hindered by the illegality of these actions. Confidentiality is essential and funding bodies such as universities can be extremely vulnerable to public opinion on such sensitive issues. Independent funding needs to be made available to qualified researchers, and some legal protection for participants is necessary.

Witness Commentary

The Canadian Palliative Care Association continues to seek a national consensus on acceptable standards of practice applicable to all practice settings and program models, whether institution or community-based, professional, or volunteer. In 1995, with Health Canada support through the National AIDS Strategy, initial consensus on national guidelines and standards was achieved. By 1998, with funding from the Canadian Breast Cancer Initiative, a national consensus was achieved on 70 per cent of the standards.

Recently, the Canadian Palliative Care Association received from Health Canada $46,000 of an estimated $450,000 needed to complete and disseminate national standards. At the same time, Health Canada funded a manual of national guidelines to support end-of-life care for seniors.

Witness Commentary

Health Canada has recently begun to develop an organizational approach to ethics, but the professional associations strongly feel that they have the major capability for guidelines and standards development. They advocate working with the public and having Health Canada play a supportive role.

Health care providers understand that appropriate management of dying patients is ethically supported and legal. Over the past five years professional organizations involved in end-of-life care have individually and collaboratively developed codes of ethics and joint statements on many key issues. This has prevented or helped to resolve ethical conflicts over the appropriateness of initiating, continuing, withholding, or withdrawing end-of-life care and treatment. The professional organizations involved in collaborative action include the Canadian Healthcare Association, the Canadian Medical Association, the Canadian Nurses Association, and the Catholic Health Association of Canada.

Witness Commentary

The recommended legislation and guidelines were not put into place.

Witness Commentary

Eight provinces and one territory have now passed and proclaimed advance directive legislation (for further details, see Part D of Appendix I, "Citations for Advance Directives Legislation in Canada").

While advance directives continue to receive widespread support, some new concerns have arisen. For example, advance directives, if not updated regularly, may be implemented after a patient has changed his or her mind. Alternatively, family members may feel that a change in position has occurred. The health care team, or even the family, may not be aware of the advance directive. An emergency situation may arise in which the application of the health care directive is not clear, or emergency medical personnel, such as ambulance drivers, may have a legal duty to revive the patient.

A public education and information campaign might alleviate these potential problems. There are several examples of good educational packages prepared by senior citizen groups.

There has been no coordinated attempt to establish reciprocal arrangements allowing the implementation of advance directives executed in another province or territory. One difficulty is that some provinces do not have both types of directives: an instruction directive, which sets out the medical treatment desired, and a proxy directive, which says who should make decisions in the event of incompetency. It would be difficult for a province with only proxy directives to implement an instruction directive.

Witness Commentary

There have been no amendments to the Criminal Code with respect to end-of-life situations.

There is, however, general agreement that rarely, if ever, will properly administered pain control shorten life. It is increasingly accepted that proper pain control should not create a legal issue. However, lay people and many medical personnel still mistakenly think that pain control or proper withholding and withdrawal is somehow inappropriately hastening death. This can create unnecessary confusion and lead to unsatisfactory care, so a clarification of the law should take place. However, legislation should not become an attempt to micromanage medical practice; legislation cannot substitute for good judgement, good practice and an understanding of the appropriate medical ethics.

There are other areas requiring legal clarification, such as the right of mature minors to consent to or to refuse treatment and the unilateral withdrawal of treatment in futile situations.

1995 Recommendation on Compassionate Homicide

Finally, Of Life and Death contained a recommendation that the Criminal Code be amended to provide for a less severe penalty for compassionate homicide than for murder. The Subcommittee does not intend to deal with this recommendation for several reasons: there has been no change in the law, and the Minister of Justice, when requested to appear, noted that the Latimer case is before the Supreme Court of Canada and comment on the issue by a political body is therefore inappropriate.

LIST OF RECOMMENDATIONS
FOR QUALITY END-OF-LIFE CARE

1. That the federal government, in collaboration with the provinces, develop a national strategy for end-of-life care.
2. That the federal government, in collaboration with the provinces, establish a five-year plan for implementing this national strategy.
3. That the federal government prepare an annual progress report on implementing this national strategy.
4. That the federal government immediately assess the need for home care and pharmacare for the dying and establish, in collaboration with the provinces, the funding required for these programs.
5. That the federal government immediately implement income security and job protection for family members who care for the dying.
6. That the federal government, working in collaboration with the provinces and the educational community, explore ways to increase multidisciplinary training and education of professionals involved in end-of-life care.
7. That the federal Minister of Health work with other relevant federal ministers to develop an interdepartmental strategy on end-of-life care.
8. That the federal Minister of Health discuss the establishment of a federal, provincial, and territorial strategy on end-of-life care with provincial and territorial counterparts at the next meeting of the Ministers of Health.
9. That the federal Minister of Health discuss with provincial and territorial counterparts appropriate measures for funding of end-of-life initiatives.
10. That the Canadian Institutes of Health Research be encouraged to establish an institute that focuses on end-of-life issues facing Canadians of all ages with all medical conditions.
11. That the Canadian Institute for Health Information be encouraged to develop indicators for quality end-of-life care.
12. That the federal Minister of Health coordinate and implement a multi-dimensional agenda for end-of-life research that involves relevant departments, agencies, and other levels of government.
13. That the federal government, in collaboration with the provinces, develop a five-year plan for implementing the 1995 unanimous recommendations.
14. That the federal government prepare an annual progress report on the implementation of the unanimous recommendations.