THE SENATE
LE SÉNAT
QUALITY END-OF-LIFE CARE:
THE RIGHT OF EVERY CANADIAN
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
i
ii
ORDERS OF REFERENCE
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:
iii
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
iv
TABLE OF CONTENTS
THE SUBCOMMITTEE'S CONCLUSIONS.................................................................. 1
INTRODUCTION .............................................................................................................. 3
PART I: THE NEED FOR A NATIONAL STRATEGY -- OUR PRIORITY ........... 5
A. Quality End-of-Life Care: The Current Context........................................................ 5
1. End-of-Life in the Current Health Care System .................................................. 7
2. Specialized Training for End-of-Life Interdisciplinary Teams ........................... 8
3. Research............................................................................................................... 9
4. Guidelines ............................................................................................................ 9
B. Achieving Quality End-of-Life Care ........................................................................ 10
1. A National Strategy............................................................................................ 10
2. Professional Training and Public Education...................................................... 12
3. Research............................................................................................................. 12
4. Guidelines .......................................................................................................... 13
5. Advance Directives............................................................................................ 14
C. The Federal Role in Quality End-of-Life Care ......................................................... 14
1. Federal Involvement in a National End-of-Life Strategy .................................. 16
2. Federal Health System Funding Initiatives........................................................ 19
3. Federal Research and Information Dissemination Efforts................................. 20
PART II: REPORT CARD 2000 -- PROGRESS ON THE UNANIMOUS 1995
RECOMMENDATIONS FROM OF LIFE AND DEATH.................................. 23
A. Palliative Care ........................................................................................................... 24
B. Education and Training ............................................................................................. 27
C. Research .................................................................................................................... 29
D. Guidelines and Standards.......................................................................................... 32
E. Advance Directives ................................................................................................... 34
F. Legislative Initiatives ................................................................................................ 35
LIST OF RECOMMENDATIONS FOR QUALITY END-OF-LIFE CARE ............ 37
v
APPENDIX I: UPDATE 2000 ........................................................................................ 39
A. Palliative Care in Canada - Provincial Update.......................................................... 39
1. British Columbia Ministry of Health and Minister Responsible for Seniors..... 39
2. Alberta Health and Wellness ............................................................................. 40
3. Saskatchewan Health ......................................................................................... 41
4. Manitoba Health................................................................................................. 42
5. Ontario Ministry of Health and Long-Term Care.............................................. 43
6. Quebec Ministry of Health and Social Services ................................................ 45
7. New Brunswick Health and Wellness................................................................ 46
8. Nova Scotia Department of Health .................................................................... 47
9. Prince Edward Island Health and Social Services ............................................. 48
10. Newfoundland and Labrador Department of Health and Community
Services ....................................................................................................... 50
B. Major Canadian Developments and Events in End-of-Life Health Care
Since 1995.......................................................................................................... 51
C. Legislative Proposals Introduced in Parliament in Response to the Unanimous
Recommendations.............................................................................................. 52
D. Citations for Advance Directives Legislation in Canada.......................................... 53
E. Sources for Sample Directives .................................................................................. 54
APPENDIX II:
A. Witnesses Appearing Before the Subcommittee....................................................... 55
B Brief Submitted to the Subcommittee ....................................................................... 61
C. Materials Received by the Subcommittee................................................................. 63
APPENDIX III: TERMINOLOGY ............................................................................... 67
vi
vii
viii
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:
1
•
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:
Recommendations 1-3:
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; and
3.
That the federal government prepare an annual progress report on
implementing this national strategy.
2
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
3
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.
4
PART I
THE NEED FOR A NATIONAL STRATEGY -- OUR
PRIORITY
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-oflife 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
5
of penitentiaries.
minimal.
Coordination between federal and provincial governments seems
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:
Deaths
•
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.
Diseases
•
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.
Palliative Care
•
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.
6
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.
7
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
8
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 fulltime 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.
9
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,
10
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 nonprofessional 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.
11
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 endstage 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.
12
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.
13
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
14
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.
15
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:
Recommendation 4:
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.
16
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:
Recommendation 5:
5.
That the federal government immediately implement income security and job
protection for family members who care for the dying.
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 endof-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:
Recommendation 6:
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.
17
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:
Recommendation 7:
7.
That the federal Minister of Health work with other relevant federal
ministers to develop an interdepartmental strategy on end-of-life care.
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
18
been several unconnected policy efforts that focused on health care factors relevant to endof-life care such as homecare, continuing care, data collection and surveillance.
To promote a collaborative movement toward the national strategy, the
Subcommittee recommends:
Recommendation 8:
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.
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
19
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:
Recommendation 9:
9.
That the federal Minister of Health discuss with provincial and territorial
counterparts appropriate measures for funding of end-of-life initiatives.
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
20
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:
Recommendations 10-12:
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 multidimensional
agenda
for
end-of-life
research
that
involves relevant
departments, agencies, and other levels of government.
The Subcommittee wishes to make note of the thousands of volunteers who
provide palliative care and to them we extend our heartfelt thanks.
21
22
PART II: REPORT CARD 2000
PROGRESS ON THE UNANIMOUS 1995
RECOMMENDATIONS FROM OF LIFE AND DEATH
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:
Recommendations 13-14:
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.
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
23
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.
A.
PALLIATIVE CARE
1995 Recommendations
•
Governments make palliative care programs a top priority in the
restructuring of the health care system.
•
There be an integrated approach to palliative care. The delivery of care,
whether in the home, in hospices or in institutions, with the support of
volunteers, must be coordinated to maximize effectiveness. The provision of
respite services is an essential component.
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.
24
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 crossjurisdictional 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 NonInsured 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.
25
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 24hours-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
26
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.
B.
EDUCATION AND TRAINING
1995 Recommendation
•
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
27
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.
1995 Recommendation
•
Education and training with respect to pain control be expanded and
improved for all health care professionals.
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.
28
Pharmacists, in their role as drug experts, work with other professionals to develop
protocols allowing adjustments to the dosage of pain medications.
1995 Recommendation
•
The Federal Ministry of Health, in cooperation with the provinces and
territories, sponsor a national campaign designed to inform the public as to
their rights with respect to the refusal of life-sustaining treatment.
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.
C.
RESEARCH
1995 Recommendation
•
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.
29
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.
30
The Canadian Institutes of Health Research does not currently support an end-oflife 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.
1995 Recommendation
•
The federal government, in cooperation with the provinces and territories,
undertake a study in order to determine the frequency and conditions under
which total sedation is practised.
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.
1995 Recommendation
•
Research be conducted in order to determine the frequency with which and
conditions under which life-sustaining treatment is withheld or withdrawn
under the recommended legislation and guidelines.
Witness Commentary
The recommended legislation and guidelines were not put in place, so no such
research was possible.
1995 Recommendation
•
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.
31
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.
D.
GUIDELINES AND STANDARDS
1995 Recommendation
•
The development and implementation of national guidelines and standards be
continued (palliative care)
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 endof-life care for seniors.
32
1995 Recommendations
•
The division of Health Canada responsible for health protection and
promotion, in cooperation with the provinces, territories and the national
associations of health care professionals, develop guidelines and standards for
the provision of treatment for the purpose of alleviating suffering where that
may shorten life.
•
The division of Health Canada responsible for health protection and
promotion, in cooperation with the provinces, territories and the national
associations of health care professionals, develop guidelines and standards for
the practice of the total sedation of patients.
•
The division of Health Canada responsible for health protection and
promotion, in consultation with the provinces and territories and the relevant
professional associations, establish guidelines to govern the withholding and
withdrawal of life-sustaining treatment.
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.
33
1995 Recommendation
•
Professional guidelines be amended so that they are consistent with these
recommendations, the amended Criminal Code, and the national guidelines
(withholding and withdrawal).
Witness Commentary
The recommended legislation and guidelines were not put into place.
E.
ADVANCE DIRECTIVES
1995 Recommendations
•
Those provinces and territories that do not have advance directive legislation
adopt such legislation.
•
The provinces and territories establish a protocol to recognize advance
directives executed in other provinces and territories.
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.
34
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.
F.
LEGISLATIVE INITIATIVES
1995 Recommendations
•
The Criminal Code be amended to clarify the practice of providing treatment
for the purpose of alleviating suffering that may shorten life.
•
The Criminal Code be amended and necessary legislation be enacted in order
to explicitly recognize and to clarify the circumstances in which the
withholding and withdrawal of life-sustaining treatment is legally acceptable.
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
35
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.
36
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.
37
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 multidimensional
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.
38
APPENDIX I: UPDATE 2000
Of Life and Death contained 16 appendices, describing the information received by
the Committee, either from witnesses or other sources.
Update 2000 updates the
information that is relevant to the unanimous 1995 recommendations.
A.
PALLIATIVE CARE IN CANADA - PROVINCIAL UPDATE
1.
British Columbia Ministry of Health and Minister Responsible for Seniors
Organization
In 1997 responsibility for the direct management of most health services was
transferred from the Ministry of Health to 11 Regional Health Boards, 34 Community
Health Councils, and 7 Community Health Services Societies (health authorities).
Palliative care is among the services planned and delivered regionally and locally.
Palliative care continues to be defined as a core service with continuity of care as a
guiding principle regardless of the setting. The health authorities are expected to provide
an integrated network of palliative services to clients and their families across a continuum
of care: medical, hospital, or community.
Services
Through budgets allocated to the health authorities, the Ministry funds palliative
care services, both hospital and community-based, such as home care nursing, home
support workers, rehabilitation, and bereavement counselling.
The former funding
arrangement for the Hospital and Partnership program is now annualized in the health
authorities' base funding. All health authorities are currently reviewing their palliative
care plans. Communities in British Columbia vary in the range and comprehensiveness of
available palliative care services.
39
As of July 1999 the Ministry provided operating funds for 5 free-standing hospices
with 42 beds. Several hospice projects are in the proposal stage, but many rural hospice
programs continue to rely on community fund raising.
Post-1995 Initiatives
In 1997 the British Columbia Hospice Palliative Care Association developed a
continuum of care model as a blueprint for communities involved in coordination. Health
authorities are using this model as the basis for planning.
The 1999 report entitled Continuing Care: Community for Life reviewed
continuing care and recommended the removal of financial barriers to care in the
community; especially the disincentive for community palliative care caused by the cost
of drugs and medical supplies.
2.
Alberta Health and Wellness
Organization
Since 1995 the regional health authorities have responsibility for hospitals,
continuing care facilities, community health services, and public health programs. They
deliver health services in the regions and work with local communities to deliver health
services to local residents. There are currently 17 authorities covering the province. All
regional health authorities are expected to provide palliative care as a core health service.
Services
Alberta Health and Wellness provides funding for allocation by the regional
authorities to programs such as palliative care. Regional authorities make their decisions
on the basis of assessments of local needs.
The Edmonton Palliative Care Program, started in June 1995, is the largest in the
province, with 56 beds providing long term palliative care for patients unable to be looked
after at home but too stable to require admission to the acute palliative care units. These
continuing care palliative care beds are distributed among four community hospitals in the
40
city. Its palliative care consultation teams are also available on a 24-hour basis to provide
consultation services to patients at home, in acute care facilities, and in emergency rooms.
Calgary has organized services slightly differently. Palliative care consultation teams
assist with pain and symptom management, and also arrange for movement among
suitable care settings. Palliative care services are available though home care, hospitals,
and two residential hospices. The free-standing hospices are not funded directly and have
daily rates.
In 1997 Alberta Health and Wellness established the Long Term Care Review
Advisory Committee to address four priority issues: home care, drug strategies,
accommodation policies, and health-related support programs. Palliative care was one of
the crosscutting elements considered in this review.
The provincial home care program currently covers palliative care clients beyond
the $3000 per month limit imposed on other clients. Some medical supplies are available
with minimal or no charge.
Post-1995 Initiatives
Alberta Health and Wellness implemented a Palliative Drug Coverage Program in
February 1999. It has an annual budget estimated at $3 million.
The Ministry has developed and funded a guide for caregivers for release in 2000.
3.
Saskatchewan Health
Organization
Since 1993, when the district health boards were formed with the authority to
provide all health services, Saskatchewan Health works with them to provide an integrated
continuum of client centred services. Funding is allocated on the basis of health needs
assessments and service planning conducted by the districts. While all of the 32 district
health boards aim to provide palliative care, there are still some inconsistencies in
services.
41
Services
Palliative care is provided through home care, long-term care, and acute care
services. In districts without designated hospital beds, places in special care homes can be
used for end-stage palliative care without the usual user charges. Urban centres like
Saskatoon and Regina have large palliative care programs with interdisciplinary teams and
24-hour response teams.
There is strong support for palliative services at home, and these have increased
significantly as financial barriers have been reduced or removed. Thus, the provincial
drug plan provides drugs without charge to people designated as palliative by physicians
or by case management assessments. In addition, the required dietary supplements and all
required basic supplies, such as medical dressings, are now available at home or in special
care homes, just as in hospitals.
Post-1995 Initiatives
In 1999 the Saskatchewan Palliative Care Association held a conference aimed at
increasing physician knowledge of palliative care.
4.
Manitoba Health
Organization
Since 1997 funding flows from Manitoba Health through 13 regional health
authorities that provide a broad range of programs and services along the care continuum.
Palliative care in the home and in the hospital is designated as a core category of service
for provision by the regional health authorities.
Services
Because there is an expectation that palliative care is provided as a core service,
Manitoba Health is working with the regional authorities to develop an accountability
measure for service expectations in this area. Since 1999 the Department, through a
special palliative care initiative, has targeted funding to all regions to enable them to
assess the current status and future needs of palliative care services.
42
While Winnipeg has the largest palliative care capacity, with 20 beds at the St.
Boniface General Hospital and 30 beds at the Riverview Health Centre, acute care beds
are available in other hospitals throughout the province. The Winnipeg Regional Health
Authority has also received funding to develop 24-hour response teams, specialized home
care services, and different ways of remunerating physicians for their palliative care work.
Home care is a well-developed program that is intended to cover palliative care in
its comprehensive approach with few limits on eligibility and no user fees. However,
Manitoba Health is working with the regional authorities to further enhance home-based
palliative care and to reduce financial barriers to drugs and supplies.
There are two free-standing hospices supported by volunteers.
These are
organized by the Palliative Care Coordinating Network and the Manitoba Hospice
Palliative Care Association.
Post-1995 Initiatives
Since 1998, there have been ongoing efforts to establish a new fee structure for
physicians who provide palliative care counselling to patients and their families.
Manitoba Health is currently drafting a Palliative Care Policy Framework in
conjunction with the regional authorities.
The May 2000 budget has indicated an expansion of Pharmacare to include
coverage for palliative drugs.
5.
Ontario Ministry of Health and Long-Term Care
Organization
The Ministry of Health and Long-Term Care retains the responsibility for
palliative care services provided in hospitals, in long-term care facilities, and in the
community by varied service providers.
43
Services
In hospitals, interdisciplinary teams provide palliative care in special units or on an
outreach basis. Access to specialized in-hospital palliative care beds was considered by
the Health Services Restructuring Commission. It recommended that 0.41 beds per 1000
population (75 years and over) be identified for palliative care from the 8.23 beds per
1000 population for continuing care beds.
In the community, visiting professional health care and homemaking services are
provided through 43 Community Care Access Centres. The CCACs are responsible for
arranging home nursing care, professional therapies, and homemaking services. They also
manage the process for admission to long-term care facilities. In addition, there are 86
community hospice organizations across the province, most supported by voluntary
service organizations.
The Ministry funds training sessions for staff of nursing homes, homes for the
aged, Community Care Access Centres and other community service organizations and for
physicians. In addition, it funds a Volunteer Visiting Hospice Initiative for hospice
organizations to train and supervise volunteer visiting services and bereavement
counselling services in the community.
The Ministry funds several supportive housing programs for people with
HIV/AIDS. Access to personal support and homemaking services is available on a 24hour per day basis.
The Ministry funds the salaries and administrative costs of local coordinators of
pain and symptom management teams. They are employed by services agencies like the
Victorian Order of Nurses. They coordinate a list of volunteers who have expertise on
pain control.
44
Post-1995 Initiatives
In April 1999, the Ministry began a two-year pilot project to fund physicians to
provide in-home services through an arrangement other than fee-for-service. The care
model is to be evaluated from the perspective of patients, families and service providers.
6.
Quebec Ministry of Health and Social Services
Organization
The 18 regional boards established by the province continue to plan, organize,
coordinate, and ultimately allocate resources to health and social programs and services
according to particular needs and priorities. Palliative care, like other types of care, is
provided on the basis of needs assessment and other factors.
Services
Within each region, hospitals are organized to provide acute palliative care from
their global budgets. Some larger hospitals in urban areas have designated palliative care
beds, day care units, multidisciplinary teams of nurses, occupational therapists,
physiotherapists, social workers, pastoral services, psychologist, psychiatrist, dietician,
and volunteers, as well as bereavement counselling.
In the non-urban areas of the
province, the provision of this range of services is difficult.
The local community service centres (CLSC) coordinate community and home
based palliative care.
After referral from a physician or designated health care
professional, a CLSC can evaluate individual palliative care requirements and either
provide the services or refer the individual to an appropriate agency. For example, the
CLSC can arrange for home care nursing, homemaker services, medical and psycho-social
counselling, and nutritional counselling. In larger centres it may have a palliative care
team including nurses, social worker, physiotherapist, nutritionist, and respiratory
expertise. It can ensure that help is available for assistance with daily living and for family
support. It can organize the provision of materials, equipment, and some drugs.
45
The centres for residential and long-term care also have palliative care services.
Supplies and medication are usually provided through the provincial insurance plan.
Post-1995 Initiatives
In May 2000, at its annual congress, the Quebec Palliative Care Association
released a report on the state of end-of-life care in the province. This work was funded by
the province and will now lead to the development of a working group to establish a
comprehensive provincial policy on palliative care.
7.
New Brunswick Health and Wellness
Organization
In 1996 the administration of the Extra-Mural Hospital Corporation (EMH) was
transferred to the eight Regional Hospital Corporations. Since that time, there have been
some adjustments as hospital standards and EMH standards and programs have
overlapped but the impact on palliative care services has been minimal.
Services
Most hospitals still have designated palliative care beds and services. Hospice
programs that provide volunteer and counselling support are also available.
The Extra-Mural Program is well developed for provision of palliative care and
continues to provide services in people's homes, as well as in other locations outside the
formal institutional setting of a hospital. There are about 30 sites for service delivery
located throughout the province. The program is financially accessible and provides
access to multidisciplinary care with no limits on visits after assessment of needs. If there
is no insurance coverage, palliative care drugs and supplies are provided without financial
restrictions. The families of dying patients are also viewed as clients.
46
Post-1995 Initiatives
In 2000, reorganization of the departments covering health and social services
brought changes for the shared homemaker services. Although the budget is limited, it is
expected that palliative care clients at home will continue to be a priority.
8.
Nova Scotia Department of Health
Organization
In 1994 regionalization in Nova Scotia was implemented and the Central, Eastern,
Northern, and Western Regional Health Boards were created. Joint planning from 1996 to
1997 resulted in the transfer of responsibility for hospitals and public health services from
the health department to the Regional Health Boards. Long-term care remains the
responsibility of the Department of Health. In 2000 the four regions will be further
divided into nine health districts to encourage more community participation.
Services
The regions often have designated units and dedicated palliative care nursing
programs to provide acute care services for palliative care, but the largest palliative care
programs are in Halifax and Sydney. In Halifax, the Queen Elizabeth II Health Sciences
Centre offers a six-bed inpatient unit, in-hospital consultation services, clinic follow-up of
ambulatory patients, home consultation services, and bereavement support. In Sydney,
the Cape Breton Health Care Complex also has a mobile consultation team available to
nursing homes and private homes.
Nova Scotia has made palliative care one of its priority areas for development. In
1998 a task force presented 39 recommendations on an integrated model of palliative care
to the Department of Health. The focus of the recommendations was that palliative
services should be available to clients in all settings, and that palliative consultation teams
of physicians, nurses, social workers, and pharmacists be available to patients and primary
care providers in acute care, home care, and long-term care.
47
Palliative care as part of continuing care remains a problem. Palliative care
services through hospices that are primarily staffed by volunteers are scattered through the
province. The 1998 provincial consultation involved multiple stakeholders who noted that
the high level of palliative care offered in nursing homes needs to be more integrated with
acute and home care.
There have been several changes affecting health professionals. Sessional fees for
palliative care consultation physicians promote greater accessibility to physicians in all
sectors.
Palliative care at Dalhousie Medical School and the schools of nursing at
Dalhousie and St. Martina's is integrated throughout the entire program.
Post-1995 Initiatives
A collaborative demonstration project funded through the federal Health
Transition Fund and organized between Nova Scotia and Prince Edward Island is
addressing palliative services in rural settings. In particular, it is looking at the needs of
formal and informal caregivers in rural areas.
In 2000 the Working Group examining the issue of deaths at home released a
brochure entitled "Expected Death in the Home," and will also release a booklet on
preparing for unexpected death at home. This document, prepared in cooperation with the
RCMP and other emergency response personnel, will provide advice to families and
communities on issues to be addressed at end-of-life.
9.
Prince Edward Island Health and Social Services
Organization
The Department of Health and Social Services works with five Regional Health
Authorities to establish the overall goals and objectives for the system, develop policies,
and allocate funding to services including palliative care.
48
Services
Palliative care services are offered through acute care, long-term care, and home
care. Hospice Associations provide volunteer support. There is an eight-bed inpatient
palliative care unit at Prince Edward Home, a continuing care facility, with services
provided by physicians with palliative care training. Most of the seven hospitals have
designated beds and most of the five regions have multidisciplinary palliative care
committees.
A 1997 review of hospice palliative care identified some limitations and gaps:
inconsistent and fragmented services across the province; limited accessibility as most
resources are in the Queens Region; limited availability of after-hours support; less than
optimal knowledge and skills about hospice palliative care practice; and the need for
greater integration of formal and informal palliative care supports.
A Provincial Palliative Care Advisory Committee has recently been established to
respond to this report by developing an implementation plan and by facilitating
information sharing with respect to initiatives related to palliative care.
Post-1995 Initiatives
The PEI/NS Rural Palliative Care Project, funded through the Health Transition
Fund, is examining a model of rural home care in East Prince Health Region and Southern
Kings Health Region.
A key component involves support and education for those
providing palliative care. It will develop, implement, and evaluate an overall education
curriculum and program for physicians, nurses, pharmacists, and others on the rural
primary care team. This is scheduled for completion in late 2000.
A family and patient resource manual entitled "Caring for a Loved One at Home"
has been developed.
A federally funded Tele-Home Care Technology Project in the West Prince Health
Region will enable a dying person and their family to have live visual and audio contact
with health professionals up to 24-hours per day.
49
A policy regarding "Pronouncement of Death in the Home for an Unexpected"
Death has been developed in cooperation with the Island Hospice Association.
10.
Newfoundland and Labrador Department of Health and Community Services
Organization
Since 1994 the delivery of institutional and community health services has been
provided under thirteen regional governance structures and one provincial board for
cancer care, the Newfoundland Cancer Treatment and Research Foundation. The intent
was to have two health authorities in each region, one for institutions and one for the
community.
Services
The six Regional Institutional Boards can offer palliative care through beds located
in institutional settings such as acute care or long-term care centres. On April 1, 1998 the
mandate of the four Health and Community Services Boards and two Integrated Health
Boards was broadened.
They now receive global funding for palliative care in the
community from the Department of Health and Community Services.
The Health Care Corporation of St. John’s has the most extensive palliative care
program. It includes an eight-bed in-patient palliative care unit as well as comprehensive
consultative service encompassing institutional and community care for pain and
symptom. Other Regional Institutional Boards have limited access to palliative care beds.
The Newfoundland Cancer Treatment and Research Foundation also has a
palliative care service which conducts outpatient pain and symptom management clinics.
Along with the Health Care Corporation of St. John’s, it is a provincial resource on
palliative care, providing referrals, liaison, and educational services as required.
Physician education and training in palliative care is provided through three
designated days in the undergraduate medical curriculum at Memorial University, a one
month rotation for Family Practice Residents at the Health Care Corporation in St John's,
50
and some time for Family Practice Residents at the Newfoundland Cancer Treatment and
Research Foundation. For other professionals, the Provincial Palliative Care Committee
supports various educational initiatives including an annual conference.
Post-1995 Initiatives
The Department, in consultation with regional representatives, is currently
conducting a provincial survey and national scan on palliative care issues. This will be
followed by the development of a Provincial Framework for Palliative Care Services,
including standards of care, policies and protocols.
B.
MAJOR CANADIAN DEVELOPMENTS AND EVENTS IN END-OF-LIFE
HEALTH CARE SINCE 1995
April 1999 - A new, one-year post-graduate program of added competence in palliative
care was jointly accredited by the College of Family Physicians of Canada and the
Royal College of Physicians and Surgeons of Canada. By February 2000, 7 of the
16 medical colleges had applied for the new program.
1999 - The Canadian Healthcare Association, Canadian Medical Association, Canadian
Nurses Association, and Catholic Health Association approved the Joint Statement
on Preventing and Resolving Ethical Conflicts Involving Health Care Providers
and Persons Receiving Care. Among other issues, this addresses decisions about
initiating, continuing, withholding, or withdrawing care or treatment.
September 1998 - All health ministers identified continuing care, which encompasses
palliative care within home, community, and institutionalized long-term care, as
one priority for collaborative action. This commitment was reaffirmed in 1999.
51
Spring 1998 - The National Advisory Council on Aging, a federal order-in-council body,
devoted an issue of its newsletter, Expression, to the theme of palliative care and
seniors.
1998 - The Canadian Palliative Care Association, with funding from the Canadian Breast
Cancer Initiative, achieved consensus on 70 percent of the national guidelines and
standards for end-of-life care. This process continues the update of the 1989
"Guidelines for Establishing Standards, Palliative Care Services," originally
produced by the federal health department's Subcommittee on Institutional
Programs.
March 1997 - Health Canada supported a symposium on palliative care with provincial
and territorial participants. The subsequent report is titled Proceedings of the
Invitational Symposium on Palliative Care: Provincial and Territorial Trends and
Issues in Community-Based Programming.
February 1997 - The federal budget announced the Health Transition Fund of $150
million over three years. This initiative supported several home-based palliative
care projects in selected provinces.
C.
LEGISLATIVE PROPOSALS INTRODUCED IN PARLIAMENT IN
RESPONSE TO THE UNANIMOUS RECOMMENDATIONS
Bill S-13
Senator Carstairs
An Act to amend the Criminal Code (protection of health care
providers)
Introduced and read a first time - November 27, 1996.
Bill S-29
Senator Lavoie-Roux
An Act to amend the Criminal Code (Protection of Patients and
Health Care Providers)
Introduced and read a first time - April 29, 1999.
52
Bill S-2
D.
Senator Carstairs
An Act to facilitate the making of legitimate medical decisions
regarding life-sustaining treatments and the controlling of pain
Introduced and read a first time - October 13, 1999
Read a second time and referred to the Standing Senate Committee
on Legal and Constitutional Affairs - February 23, 2000.
CITATIONS FOR ADVANCE DIRECTIVES LEGISLATION IN CANADA
In the past five years three provinces -- Alberta, Saskatchewan and Newfoundland --
have passed and brought into force new legislation; the Yukon and Ontario have significantly
amended their legislation; British Columbia has proclaimed its 1993 legislation; and Prince
Edward Island has passed legislation which is not yet in force.
British Columbia
Representation Agreement Act, R.S.B.C. 1996, c. 405
Health Care (Consent) and Care Facility (Admission) Act,
R.S.B.C. 1996, c. 181
Alberta
Personal Directives Act, S.A. 1996, c. P-4.03
Saskatchewan
The Health Care Directives and Substitute Health Care
Decision Makers Act, S.S. 1997, c. H-0.001
Manitoba
Health Care Directives Act, C.C.S.M. c.H27
Ontario
Substitute Decisions Act, 1992, S.O. 1992, c.30
Health Care Consent Act, 1996, S.O. 1996, c.2, Sched. A
Quebec
Arts. 10-25, Quebec Civil Code
New Brunswick
No legislation, but the Department of Justice is apparently
developing attorney for personal care legislation.
Nova Scotia
Medical Consent Act, R.S.N.S. 1989, c. 279
Prince Edward Island
Consent to Treatment and Health Care Directives Act,
S.P.E.I. 1996, c. 10. Not yet in force.
53
Newfoundland
Advance Health Care Directives Act, S.N. 1995, c. A-4.1
Yukon
Health Act, S.Y. 1989-90, c. 36, s. 45; as amended by S.Y.
1995, c. 8, ss. 19 & 20
Northwest Territories
No legislation
Nunavut
No legislation
E.
SOURCES FOR SAMPLE DIRECTIVES
The University of Toronto Joint Centre for Bioethics has a living will form on its
website, together with useful information about living wills, their legality in the various
provinces, and the factors that should be taken into consideration when constructing either a
proxy or instructive direction.
See the Joint Centre for Bioethics home page at:
http://www.utoronto.ca/jcb.
54
APPENDIX II
A. WITNESSES APPEARING BEFORE THE
SUBCOMMITTEE
Witnesses
Issue No.
Date
Alberta Life Foundation
Calgary, Alberta
ÖMr. James Mahony
6
March 20, 2000
Alliance for Life Ontario
Guelph, Ontario
ÖMs. Jacki Jeffs, Executive Director.
6
March 20, 2000
Barreau du Québec
Montreal, Québec
ÖMe Suzanne Vadboncoeur, Director,
Research and legislation Division;
ÖMe Edith Deleury, Professor, Université Laval;
ÖMe Jean-Pierre Ménard.
7
March 21, 2000
Campaign Life Coalition
Ottawa, Ontario
ÖMr. Peter Ryan, Director (New Brunswick).
6
March 20, 2000
Canadian Healthcare Association
Ottawa, Ontario
ÖSharon Sholzberg-Gray, President and CEO
3
February 22, 2000
Canadian Medical Association
Ottawa, Ontario
ÖDr. Gordon L. Crelinsten,
Chair, Committee on Ethics
3
February 22, 2000
Canadian Nurses Association
Ottawa, Ontario
ÖSharon Nield, Manager, Nursing
Policy and Regulatory Support
3
February 22, 2000
55
Canadian Palliative Care Association
Ottawa, Ontario
and the
Association québécoise de soins palliatifs
Montréal, Québec
ÖDr. Bernard Lapointe, President
2
February 15, 2000
Canadian Pharmacists Association
Ottawa, Ontario
ÖMr. Jeff Poston, Executive Director
3
February 22, 2000
Care in Dying
Ottawa, Ontario
ÖMr. Mark Cameron, coordinator
ÖDr. Joseph Ayoub, oncologist,
Institut du cancer de Montréal
6
March 20, 2000
Catholic Health Association of Canada
Ottawa, Ontario
ÖSister Annette Noël, Vice Chair,
Board of Directors
ÖDr. Elizabeth Latimer, Professor,
Dept. of Family Medicine,
McMaster University
ÖDr. Richard Haughian, President
7
March 21, 2000
Prof. Harvey Max Chochinov
Winnipeg, Manitoba
University of Manitoba
4
February 28, 2000
College of Family Physicians of Canada
Mississauga, Ontario
ÖDr. Richard MacLachlan, Head
2
February 15, 2000
Council of Canadians with Disabilities
Winnipeg, Manitoba
Ö Mr. Hugh Scher, Chair,
Human Rights Committee.
6
March 20, 2000
Council on Ageing of Ottawa-Carleton
Ottawa, Ontario
ÖProf. David Bernhardt, President;
ÖMarian Chapman, Chair
“Of Life and Death” Update Task Force.
5
February 29, 2000
56
Department of Health Canada
10
Ottawa, Ontario
ÖThe Honourable Allan Rock, P.C., M.P.,
Minister of Health;
ÖCliff Halliwell, Director General,
Applied Research and Analysis Directorate,
Information, Analysis and Connectivity Branch;
ÖBarbara Ouellet, Director of Home Care
and Pharmaceuticals,
Health Care Directorate,
Policy and Consultation Branch;
ÖDr. Christina Mills, Director, Cancer Bureau,
Laboratory Centre for Disease Control
Health Protection Branch
May 15, 2000
Department of Health Canada
4
Ottawa, Ontario
ÖBarbara Ouellet, Director
ÖNancy Garrard, Director,
Division of Aging and Seniors,
Health Promotion and Programs Branch
ÖDr. Christina Mills, Director, Cancer Bureau,
Laboratory Centre for Disease Control,
Health Protection Branch;
ÖLeslie Gaudette, Section Head,
Treatment and Palliation Section,
Cancer Control Assessment and Surveillance Division,
Cancer Bureau, Laboratory Centre for Disease Control,
Health Protection Branch;
ÖDebra Gillis, Director,
Health Programs Support Division,
Medical Services Branch;
ÖCliff Halliwell, Director General,
Applied Research & Analysis Directorate,
Information, Analysis and Connectivity Branch
February 28, 2000
Department of Health Canada
Ottawa, Ontario
ÖCarole Bouchard, Manager,
Office of Controlled Substances;
ÖDr. Brian Gillespie, Senior Medical Advisor,
Bureau of Pharmaceutical Assessment.
6
March 20, 2000
Prof. Jocelyn Downie
Halifax, Nova Scotia
Dalhousie University (Nova Scotia)
1
February 14, 2000
57
Elizabeth Bruyère Centre
4
Ottawa, Ontario
ÖMaryse Bouvette, nurse,
Palliative Care Program
ÖDr. Cori Schroder, Palliative Care Program;
ÖDr. Ray Viola, Palliative Care Program;
ÖDiane Hupé, Vice President, Palliative Care Program.
February 28, 2000
Euthanasia Prevention Coalition of Ontario
London, Ontario
ÖMr. Alex Schadenberg, Executive Director.
6
March 20, 2000
Virginia (Ginny) Jarvis
Ottawa, Ontario
Palliative Care Nurse Consultant,
Ottawa Hospital
9
April 4, 2000
Dr. Neil MacDonald
Montreal, Québec
Centre for Bioethics,
Clinical Research Institute of Montreal
8
March 28, 2000
Dr. Douglas Martin
Toronto, Ontario
University of Toronto
5
February 29, 2000
Medical Research Council of Canada
Ottawa, Ontario
ÖDr. Henry Friesen, President
8
March 28, 2000
Prof. Brian Mishara
Montreal, Québec
Department of Psychology,
Université du Québec à Montréal
8
March 28, 2000
Office of the Chief Coroner of Ontario
Toronto, Ontario
ÖDr. James G. Young, Chief Coroner
8
March 28, 2000
Russel Ogden
New Westminster, B.C.
8
March 28, 2000
Dr. David Roy
Montreal, Québec
Clinical Research Institute of Montreal
9
April 4, 2000
58
Royal College of Physicians and Surgeons
3
Ottawa, Ontario
ÖDr. Michel Brazeau, Chief Executive Officer
ÖDr. Henry Dinsdale, Past Chief Executive Officer
February 22, 2000
Dr. Peter Singer
Toronto, Ontario
University of Toronto
4
February 28, 2000
Prof. Barney Sneiderman
Winnipeg, Manitoba
University of Manitoba
1
February 14, 2000
59
60
APPENDIX II
B. BRIEF SUBMITTED TO THE SUBCOMMITTEE
The following brief was received from an organization that did not appear before the
Subcommittee.
Physicians and Scientists for a Healthy World
Nepean, Ontario
61
62
APPENDIX II:
C. MATERIALS RECEIVED BY THE SUBCOMMITTEE
Books
Cassel, Christine; and Marilyn Field. Approaching Death, Improving Care at the End of
Life, Washington, D.C.: National Academy Press, 1997.
Cassel, Christine and Kathleen Foley. Principles for Care of Patients at the End of Life:
An Emerging Consensus among the Specialties of Medicine, Millbank Reports,
December 1999.
Comité Consultatif National d’éthique.
France, January 2000.
End of Life, Ending Life, Euthanasia, Paris,
MacDonald, Neil, editor. Palliative Medicine – A Case-Based Manual, Oxford University
Press, 1998.
Fisher, Rory; Margaret Ross; and Michael MacLean, editors. A Guide to End-of-Life Care
for Seniors, Ottawa: University of Toronto, University of Ottawa, and Health
Canada, 2000.
Articles
Bowman, Kerry; Douglas Martin; and Peter Singer. "Quality end-of-life care," Journal of
Evaluation in Clinical Practice, 6 (2000) Blackwell Science.
Chochinov; Harvey Max; and Douglas Tataryn, Jennifer Clinch, Deborah Dudgeon. "Will
to Live in the Terminally Ill," The Lancet, 354:9181 (September 1999) 816-819.
Ganzini, Linda; Heidi Nelson; Terri Schmidt; Dale Kraemer; Molly Delorit; and Melinda
Lee. "Physicians’ Experiences with the Oregon Death with Dignity Act," The
New England Journal of Medicine, 342(8) (February 24, 2000) 557-563.
Goode, Erica. "Terminal Cancer Patients’ Will to Live is Found to Fluctuate," New York
Times, September 4, 1999.
Groenewoud, Johanna; Agnes Van des Heide; Bregje Onwuteaka-Philipsen; Dick
Willems; Paul Van der Maas; and Gerrit Van der Wal. "Clinical Problems with the
Performance of Euthanasia and Physician-Assisted Suicide in the Netherlands,"
The New England Journal of Medicine, 342(8) (February 24, 2000) 551-556.
63
Hoffman, Brian F.. "Advance Directives: Principles, Problems and Solutions for
Physicians," Annals, Royal College of Physicians and Surgeons of Canada, 30:3
(April 1997) 169-173.
Hogan, D.B.; C. Patterson; E. Boustcha; P. McGann; J. Morin; K. Rockwood; and D.
Strang. "Writing Terminal Educational Objectives for Royal College of Physicians
and Surgeons of Canada Accredited Training Programs in Geriatric Medicine,"
Annals, Royal College of Physicians and Surgeons of Canada, 28:5 (August 1995)
291-296.
Kinsella, Douglas and Marja Verhoef. "Determinants of Canadian Physicians’ Opinions
about Legalized Physician-Assisted Suicide: A National Survey," Annals, Royal
College of Physicians and Surgeons of Canada, 32:4 (June 1999) 211-215.
Last, John. "Medicine and Literature: Passion, Compassion, Confusion, and Other
Emotions in Stories of Sickness and Healers," Annals, Royal College of Physicians
and Surgeons of Canada, 32:8 (December 1999) 449-452.
Latimer, Elizabeth. "Ethical Care at the End of Life," Journal of the American Medical
Association, 158(13) (June 1998) 1741-1747.
Latimer, Elizabeth; John McDonald; and John Krauser.
"Excerpts from OMA
Colloquium on Care of the Dying Patient -- Toward the Provision of Effective
Palliative Care in Ontario, Ontario Medical Review, (July/August 1998) 22-28.
MacDonald, Neil. "Summary of Do Not Resuscitate Form for Province of British
Columbia," Annals, Royal College of Physicians and Surgeons of Canada, 33:1
(February 2000) 25.
Mishara, Brian. "Synthesis of Research and Evidence on Factors Affecting the Desire of
Terminally Ill or Seriously Chronically Ill Persons to Hasten Death," OMEGA:
Journal of Death and Dying, 39(1) (1999) 1-70.
Nielsen, Torsten. "Guidelines for Legalized Euthanasia in Canada: A Proposal," Annals,
Royal College of Physicians and Surgeons of Canada, 31:7 (October 1998).
"Physician-Assisted Suicide and Euthanasia in Practice", The New England Journal of
Medicine, 342(8) (February 2000) 583-584.
Sneiderman, Barney. "The Case of Robert Latimer: A Commentary on Crime and
Punishment," Alberta Law Review 37:4 (1999).
Somerville, Margaret. "Guidelines for Legalized Euthanasia in Canada: A Rejection of a
Proposal," Annals, Royal College of Physicians and Surgeons of Canada, 32:1
(February 1999) 8-10.
64
Sullivan, Amy; Katrina Hedberg; and David Fleming. "Legalized Physicians-Assisted
Suicide in Oregon – The Second Year," The New England Journal of Medicine,
342(8), (February 24, 2000) 598-604.
SUPPORT Principal Investigators. "A Controlled Trial to Improve Care for Seriously Ill
Hospitalized Patients," Journal of the American Medical Association 274(20),
(November 22/29 1995) 1591-1598.
Trevor-Deutsch; Burleigh; and Robert F. Nelson. "Refusal of Treatment, Leading to
Death: Towards Optimization of Informed Consent," Annals, Royal College of
Physicians and Surgeons of Canada, 29:8 (December 1996) 487-489.
Trollope-Kumar, Karen. "Suffering and Healing," Annals, Royal College of Physicians
and Surgeons of Canada, 29:8 (December 1996) 485-486.
Young, James. "A Coroner’s View Regarding the 'Right to Die' Debate," A Coroner’s
View, 425-439.
Government Publications
Canada, Health Canada. Palliative Care: Info Sheet for Seniors, Division of Aging and
Seniors.
Canada, National Advisory Council on Aging. Expression, Newsletter of the National
Advisory Council on Aging, Vol. 11, Number 3, Spring 1998.
Unpublished Documents
Canadian Healthcare Association, Canadian Medical Association, Canadian Nurses
Association and Catholic Health Association of Canada. "Joint Statement on
Resuscitative Interventions" (Update1995), October 1995.
---. "Joint Statement on Preventing and Resolving Ethical Conflicts Involving Health
Care Providers and Persons Receiving Care," 1999.
Canadian Palliative Care Association. "Canadian Agenda for Research in Palliative
Care," A Report by the National Research Advisory Committee of the Canadian
Palliative Care Association, March 31, 1999.
Ogden, Russel. "Non-Physician Assisted Suicide: The Technological Imperative of the
Deathing Counterculture."
65
66
APPENDIX III: TERMINOLOGY
(Excerpt from the 1995 Report Of Life and Death)
For the purposes of its study the Subcommittee chose to use the same terminology defined
in the 1995 Report. The following are the relevant definitions:
"Palliative care" is care aimed at alleviating suffering - physical, emotional,
psychosocial, or spiritual - rather than curing. It is concerned with the comfort of the
suffering individual.
"Total sedation" is the practice of rendering a person totally unconscious through the
administration of drugs without potentially shortening life.
"Treatment aimed at the alleviation of suffering that may shorten life" is the
administration of sufficient amounts of drugs to control suffering even though this may
shorten life.
"Withholding of life-sustaining treatment" is not starting treatment that has the
potential to sustain the life of a patient.
"Withdrawal of life-sustaining treatment" is stopping treatment that has the potential to
sustain the life of a patient.
"Advance directive", referred to as mandate in the Quebec Civil Code, and also
commonly known as a living will, is a document executed by a competent individual
concerning health care decisions to be made in the event that the individual becomes
incompetent to make such decisions. Advance directives can be divided into two
categories - instruction directives and proxy directives. The latter are also known as
durable powers of attorney for health care. In an instruction directive, an individual sets
out what or how health care decisions are to be made in the event that he or she becomes
incompetent. In a proxy directive, an individual sets out who is to make health care
67
decisions in the event that he or she becomes incompetent. A valid advance directive is
one completed according to the requirements set out in the relevant legislation.
Throughout this Report, when the expression advance directive is used, validity is
assumed unless otherwise indicated.
"Futile Treatment" is treatment that in the opinion of the health care team will be
completely ineffective. This term does not include treatment that may be effective but
whose results are deemed undesirable.
"Free and informed consent" means the voluntary agreement by a person who in the
possession and exercise of sufficient mental capacity, as defined by an appropriate
medical professional, makes an intelligent choice as to treatment options. It supposes
knowledge about the consequences of having or not having the treatment and about
possible alternatives. The consent must be free from coercion, duress and mistake.
68