National Action Planning Workshop on End-of-life Care
Health Canada Secretariat on Palliative and
End-of-life Care
Workshop Report, March 2-4, 2002 Winnipeg,
Manitoba Strachanï Tomlinson March 2-4, 2002
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(1,402KB)
Contents
Acknowledgements
Introduction
National Action Plan on End-of-Life Care
1: Availability and Access to
Services
2: Education for Healthcare Providers
3: Ethical, Cultural and Spiritual
Considerations
4: Public Education and Awareness
5: Research
6: Support: Family, Caregiver and
Significant Others
7: Surveillance
Implementation Challenges
Structure
Next Steps
Closing Remarks
Appendix 1: Acronyms and Key Terms
Appendix 2: Key National Events: A
Chronology
Appendix 3: Presentation Slides -Dr. Neil
Hagen
Appendix 4: Presentation Slides -Ms. Ceal
Tournier and Ms. Gaye Hanson
Appendix 5: Definitional Issues in National
Action Planning Workshop
Appendix 6: Organizations
Appendix 7: Participants
Acknowledgements
Sincere thanks to the volunteer Steering Committee Members and
Working Group Co-Chairs who helped to organize the workshop.
Dr. Pierre Allard Mr. Barry Ashpole Ms. Sharon
Baxter Dr. Fred Burge Dr. Harvey Chochinov
Dr. Robin Cohen Ms. Kirstin Doull Dr. Michael
Downing Mr. Eugene Dufour Rev. Dr. Neil Elford
Dr. Robin Fainsinger
|
Dr. Neil Hagen Dr. Laura Hawryluck Ms. Lorna
Hillman Ms. Laurianne Jodouin Ms. Rosella
Kinoshameg Dr. Francis Lau Dr. Larry Librach
Dr. Sue Morrison Dr. Neil MacDonald Ms. Patricia
Russell Ms. Judy Simpson
|
Introduction
Quality palliative and end-of-life care involves not
only professional health care providers, but also family
and other volunteer caregivers. It encompasses not only
the physical, but also the spiritual, social,
psychosocial, cultural and emotional dimensions of
patient care. It is sustained by research and
surveillance and it involves different levels of
government.
Canada has the opportunity to take an international
leadership role in establishing what we think should be
priorities for end-of-life care. We can forge a new
component to our health care policy that reflects our
values on life, so that it is truly comprehensive, from
cradle to grave.
This workshop is an important first step - and a
catalyst to further action - in developing a national,
five -year action plan for end-of-life care.
Senator Sharon Carstairs, Minister with Special
Responsibility for Palliative Care
The Elders taught us to look at the whole picture.
That's why we're here nationally today. We are the
roadbuilders for the youngsters. We have to build it well
so that they will respect us. Ken Saddleback,
Cultural Advisor, Kiwetahk Cultural Society, Alberta
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. Dr. Harvey
Chochinov, Professor, Department of Psychiatry, University
of Manitoba
The National Action Planning Workshop on End-of-life Care
1
took place in Winnipeg, Manitoba on March 2-4, 2002.
Over 150 participants attended the workshop, representing a
broad spectrum of stakeholders across the continuum of
palliative and end-of-life care, including healthcare
providers
2
, representatives of federal and provincial/
territorial governments, consumers, Aboriginal peoples,
researchers, delegates from health charities, professional
associations, advocacy groups and non-government
organizations.
The purpose of this workshop was to launch the development
of a national action plan to ensure that all Canadians have
access to quality end-of-life care. The conclusions in this
report consolidate and follow through on the considerable
work already in place in and included all individuals
involved in formal caregiving, e. g., physicians, nurses,
specialists, community workers, volunteers, etc.
Canada and other countries on implementing change related
to end-of-life care. This workshop focused on the following
seven areas:
- - Availability and Access to Services
- - Education for Healthcare Providers
- - Ethical, Cultural and Spiritual Considerations
- - Public Education and Awareness
- - Research
- - Support: Family, Caregiver and Significant Others
- - Surveillance.
This workshop was the first step in launching the
development of a national action plan. The next step
involves collaborative work between the Health Canada
Secretariat on Palliative and End-of-Life care and the
project Steering Committee as they follow through on this
report. As one participant put it, "the time is now",
reflecting the belief that, based on the significant work
already completed in this area and the political will
behind the initiative, there is an unprecedented
opportunity
to move forward and make important progress in
quality palliative and end-of-life care.
Opening Sessions
The workshop opened with a powerful demonstration
of
Aboriginal dances by First Nations Drummers and Dancers.
George Bear, the dancers' spokesperson, emphasized that,
regardless of age, dancing and singing are regarded in his
culture as important to healing.
Participants were welcomed by Ms. Abby Hoffmann, Director
General, Health Care Strategies and Policy Directorate,
Health Canada. The Honourable David Chomiak, Minister of
Health, Manitoba and His Worship Mayor Glen Murray, City of
Winnipeg also extended their welcome to participants and
thanked Minister Carstairs for acting as a champion of
palliative and end-of-life care in Canada.
The Honourable Sharon Carstairs, P. C., Leader of the
Government in the Senate and Minister with Special
Responsibility for Palliative Care, provided opening
remarks. The Minister shared her personal experiences of
how death has touched her life. She expressed her deep
commitment to improving palliative and end-of-life care in
Canada and her profound appreciation of the contribution
made by workshop participants in this area.
Dr. Neil Hagen, Head, Division of Palliative Medicine,
University of Calgary, gave the keynote presentation on
quality end-of-life care, describing progress made to date.
He framed the challenge of developing a national action
plan using three questions:
- Can it work?
- Does it work?
- Will it make a difference?
Dr. Hagen's presentation slides are included in Appendix
3.
Ms. Ceal Tournier, National Aboriginal Health Organization
(NAHO), and Ms. Gaye Hanson, Hanson Consulting, provided an
overview of the Aboriginal Peoples' perspectives on
end-of-life care. Their presentation slides are included in
Appendix 4.
Norms for Working Together
Participants agreed on the following norms for working
together during their discussions at the Workshop.
1. Create something you can be proud of in 5 years' time.
2. Be clear and concise. 3 Collaborate to reach
agreement. 4. Think strategic and national. 5.
Share the air time. 6. Look for solutions that are
simple and elegant.
Participants also recognized the importance of treating
each other with respect and being mindful of cultural
differences.
National Action Plan on End-of-Life Care
There is no magic answer. ...We want to stay focused on
developing an action plan - on determining what we can
do, not what we can't do. Minister Sharon
Carstairs
Participants worked in groups to provide feedback on the
Discussion Paper prepared for the workshop and develop
priorities and actions related to the following seven key
areas (alphabetical order):
1. Availability and Access to Services 2. Education
for Health Care Providers 3. Ethical, Cultural and
Spiritual Considerations 4. Public Education and
Awareness 5. Research 6. Support: Family,
Caregiver and Significant Others 7. Surveillance.
The conclusions of these seven groups are outlined in this
report; they vary in format and depth, reflecting the
current situation in each area.
The National Aboriginal Health Organization (NAHO) also
prepared a draft discussion paper on quality end-of-life
care, palliative care, and home and community care for
Aboriginal peoples. Aboriginal delegates met during the
workshop to share their perspectives on discussions. In a
post-workshop meeting, Aboriginal delegates explored their
understanding of a national action plan and identified next
steps after the workshop, including dissemination of their
final discussion paper.
This report launches the implementation phase of this
project. As such, the plan is meant to be iterative, with
regular updates and revisions that reflect the current
situation in each area. The role of the Working Group
chairs for the seven areas in this report is to support
dissemination and implementation and enable monitoring of
results. Follow-up will happen as soon as possible in each
area.
Note: This report reflects the work and discussion of the
Working Groups formed for this workshop and does not
reflect the official policy of Health Canada unless this is
clearly stated.
Priority 1: Availability and Access to Services
The challenge is to describe the availability and
access to services for palliative and end -of-life care
that presently exist across Canada, define clear goals
for comprehensive a ccess and availability, and develop a
strategy to provide quality palliative and end-of-life
care for all Canadians irrespective of their type of life
threatening illness.
Vision 2010
Palliative and end-of-life services - structured along a
continuum of specialization from primary healthcare to
services whose core activity is limited to the provision of
palliative care - are available and accessible to all
Canadians. Achieving this vision improves systemic
performance within the healthcare system and enhances
system capacity. Business cases provide both the health
care and economic rationale for this approach. Both best
practices and working, funded models are being diffused
across the country.
Priority 1.1:
Make available integrated, accessible and adequately
funded palliative and end-of-life care to all Canadians.
|
Action |
By Whom |
By When |
1.1.1
|
Direct Federal and Provincial/ Territorial (P/ T) Health
Ministers to support collaborative work focused on ensuring
that quality palliative and end-of-life care is available
across Canada. Expanded and properly funded end-of-life
home care services should include financial coverage for
drugs; both professional and non-professional care
services; access to community day programs; 24-hour pain
and symptom management teams; support for families such as
respite care and bereavement follow-up. Key
characteristics:
- public accountability/ reporting for what each
province/ territory is doing regarding palliative and
end-of-life care
- responsibility centre in each province/ territory
- provincial/ territorial/ regional accountability
- address particular needs of individuals from specific
groups: urban, rural, remote, aboriginal, pediatrics
and others
- services need to be developed within the context of
an improved home and continuing care sector and primary
health care sector.
|
TBD based on structure for this initiative
|
Before August Premiers' meeting, provide advice on
core components of end-of-life and palliative
care to ensure that Premiers identify palliative
and end-of-life care as a priority in home and
community care.
|
1. 1. 2
|
Establish and adopt norms for palliative and end-of-life
care across federal/ provincial/ territorial areas of
jurisdiction.
|
TBD based on structure for this initiative
|
December, 2003
|
1. 1. 3
|
Ensure that advocacy/ accountability is undertaken at the
local, regional, provincial/ territorial and national
levels to support this federal/ provincial/ territorial
initiative.
|
TBD based on structure for this initiative
|
December, 2002
|
1.1.4
|
Ensure that health care delivery at end-of-life is
adequately funded.
|
Federal/ Provincial/ Territorial (F/ P/ T) Health
Ministers
|
|
Priority 1.2:
Make available integrated, accessible, adequately funded
palliative and end-of-life care in varied institutional and
home settings in rural and urban communities.
|
Action
|
By Whom
|
By When
|
1.2.1
|
Support the cost of drugs for end-of-life care to assure
that patients can afford to be out of the acute care sector
and in their home communities.
|
P/ T Ministers of Health
|
December, 2004
|
1. 2. 2
|
Provide support for caregivers, such as families, e. g.,
income security, job protection, tax benefit for loss of
salary, no loss of seniority, drug benefit plan.
|
P/ T Premiers and Ministers of Health
|
December, 2004
|
1.2.3
|
Promote/ support end-of-life care to meet the particular
needs of Aboriginal communities, i. e., community based and
culturally sensitive. Promote action at the federal
level (regarding populations it serves directly) as a
demonstration of leadership by example.
|
TBD based on structure for this initiative
|
|
1.2.4
|
Establish and implement standards for community based
end-of-life care.
|
TBD based on structure for this initiative
|
|
1.2.5
|
Ensure that health care professionals receive adequate
funding through the primary care model of health care
delivery involved in palliative and end-of-life care.
Palliative and end-of-life care should be part of overall
provincial-territorial strategies for primary health care
renewal.
|
Professional Associations and P/ T Deputy Ministers
of Health
|
|
1.2.6
|
Develop programs at the federal and provincial/
territorial levels aiming at development and capacity
building of the voluntary sector in each community.
|
Canada's Voluntary Sector Initiative (VSI)
|
|
Priority 1.3
Formalize accountability mechanisms in each jurisdiction
(federal, provincial/ territorial, regional, First Nations,
Métis and Inuit) to ensure accessible and equitable
palliative and end -of-life services throughout Canada.
|
Action
|
By Whom
|
By When
|
1.3.1
|
Identify an individual (senior) to be responsible for
comprehensive policy development in palliative and
end-of-life care in order to address the vision for
palliative/ end-of-life care.
|
P/ T Premiers
|
2002
|
1. 3. 2
|
Develop specific standards for palliative and end-of-life
care across all care settings, including a mechanism to
ensure rigorous application, e. g., through quality
improvement indicators.
|
Canadian Council on Health Services Accreditation (CCHSA)
|
December, 2004
|
Priority 2: Education for Healthcare Providers
The challenge is to develop accessible and effective
strategies for educating healthcare providers to provide
holistic, interdisciplinary and quality end-of-life care
for Canadians.
Priorities
Participants in this group identified the following three
priorities and identified the same action areas for each
priority.
Priority 2.1:
Develop an effective and relevant national education
framework for service delivery at all levels based on
standards.
Priority 2.2:
Develop a National Framework for Entry - to - practice
education for healthcare providers.
Priority 2.3:
Develop a National Framework For Continuous Learning and
Competency for generalists and specialists.
Each of these priorities require action in the following
five areas:
1. Surveillance and Data 2.
Funding/ resources 3. Standards 4. Key methods/
tactics 5. Key partners.
Members of this group had wide ranging discussions focused
on each of these five areas for action. More specific
action steps will be developed as part of following through
on this work.
Priority 3: Ethical, Cultural and Spiritual
Considerations
The challenges are to:
- equip public and healthcare providers with the
abilities to have discussions about ethical decisions
throughout the process of dying
- enable culturally-specific practices and
relationships that support the dying process and
provide meaning for patient and family and assist
healthcare providers with cross cultural sensitivity
- develop broader understanding and use of
spirituality to support and respect the diversity of
meanings and practices of the dying process to the
person, family, and healthcare providers.
Priority 3.1: Advocacy
|
Action
|
By Whom
|
By When
|
3.1.1
|
Advocate for the inclusion of ethical, spiritual and
cultural dimensions in all aspects of end-of-life care.
|
Health Canada (HC), Social Sciences and Humanities
Research Council (SSHRC), Canadian Institutes of Health
Research (CIHR) in partnership with professional
organizations, across jurisdictions, provincial ministries
of health, Inter-Faith groups, cultural groups, Aboriginal
Elders
|
March, 2003
|
3.1.2
|
Develop a vision, set of values and competencies based
on
existing research and knowledge on ethical, spiritual, and
cultural dimensions of end-of-life care and death.
|
Canadian Bioethics Society (CBS), Canadian Association of
Pastoral Practice and Education (CAPPE)
|
March, 2003
|
3.1.3
|
Coordinate the legislation regarding advance care planning
across the provinces and across care jurisdictions to
ensure values, beliefs and culture are consistently
respected.
|
Federal Government to coordinate with Canadian Bar
Association, P/ T Ministries of Health
|
March, 2005
|
Priority 3.2: Education
|
Action
|
By Whom
|
By When
|
3.2.1
|
Develop and ensure implementation of ethical, cultural and
spiritual curricula for all those concerned in end-of-life
care, including adult and pediatric perspectives.
|
Professional colleges, MCC, CHPCA, CBS, Ethics Educators,
Ethics Centres, Ian Anderson Program, Aboriginal Elders,
CAPPE and cultural groups
|
March, 2003
|
3.2.2
|
Teach respect for diversity and individual interpretations
of spirituality and culture.
|
Spiritual Leaders, Community Leaders, Canadian Council of
Churches, Federal Department of Canadian Heritage,
Canadian Race Relations Association, clinical educators ,
spiritual care providers in health care agencies/
organizations, Aboriginal Elders, cultural groups,
professional associations, Victorian Order of Nurses
(VON)
|
March, 2005
|
3.2.3
|
Enable puclic discussion about the search for and the
benefits of spirituality, values, beliefs and meanings at
the end-of-life.
|
Provincial Palliative Care Associations, CHPCA,
As
sociat
ions of Churches, hospitals, professional
associations, ethics centres, Local Council of Churches,
Catholic Health Association of Canada, CAPPE, Elder and
cultural groups, VON
|
March, 2005
|
3.2.4
|
In a culturally sensitive manner, develop education for
the public on advance care planning that enables them to
understand what to expect in the decision-making process
and the implications of decisions.
|
Universities, Colleges, Clinical Ethical Centres,
professional associations, Provincial Association of
Gerontology, Canadian Association of Gerontology,
Aboriginal Elders and cultural groups, Working- Group
on Public Education and Awareness
|
March, 2004
|
Priority 3.3: Research
|
Action
|
By Whom
|
By When
|
3.3.1
|
Action By Whom By When Promote interdisciplinary research
in ethical, cultural and spiritual dimensions of
end-of-life experience and appropriate care.
|
CIHR, SSHRC, Canadian Association of Social Workers
(CASW), Rural and Remote Health Interdepartmental Committee
(CRP), various religious organizations, Aboriginal Elders
and cultural groups, working-group on research
|
March, 2004
|
Priority 3.4: Practice
|
Action
|
By Whom
|
By When
|
3.4.1
|
Develop strategies to support (including financially) the
dying person and his or her family in their cultural and
spiritual beliefs at the end-of-life, e. g., dying in place
of choice.
|
Professional associations such as CASW, CAPPE, Canadian
Chamber of Commerce, Canadian Bar Association, Institute of
Chartered Accountants, Canadian Home Care Association
(CHCA), Ethics Centres, CIHR, SSHRC, VON, professional
societies, Aboriginal Elders and cultural groups
|
March, 2004
|
3.4.2
|
Develop guidelines and standards for (a) the provision of
treatment for the purpose of alleviating suffering where
that may shorten life; (b) practice of the total sedation
of patients; and (c) to govern the withholding and
withdrawal of life-sustaining treatment.
|
Health Canada in collaboration with the provinces,
territories, and national associations of health care
professionals
|
March 2004
|
Priority 4: Public Education and Awareness
The challenges are to: a. have every Canadian
accept dying as a natural process of life, and b.
ensure/ enable/ help/ educate every community, family and
individual to know how to work together with the
community and health care system to access quality
end-of-life care.
Priority 4.1
Create a national public education campaign to address
the two points in the challenge statement. The campaign
would include the following elements:
- consistent messages and terminology used by everyone
at all levels across the country - multimedia, i.
e., look at ways to reach different targets and groups of
people - in conjunction with current initiatives if
possible.
|
Action
|
By whom
|
By When
|
4.1.1
|
Develop key campaign messages.
|
CHPCA in partnership with others, e. g., Health Canada,
provincial organizations, QEOLCC, private sector and
provincial governments
|
Immediately
|
4.1.2
|
Develop the campaign
|
Contractor
|
To be determined
|
4.1.3
|
Develop awareness tools.
|
Contractor
|
To be determined
|
Priority 4.2
Develop multiple information sources of quality, credible
information on hospice/ palliative care and end-of-life
care that are targeted to specific audiences and use a
variety of methods.
|
Action
|
By Whom
|
By When
|
4.2.1
|
Continue to support the development, implementation and
expansion of the Canadian Virtual Hospice.
|
Health Canada, CVH, private sector and others
|
Immediately and evaluate in two years
|
4.2.2
|
Create and/ or verify and disseminate education and
skills-based resources for the local level.
|
To be determined based on tructure for this initiative
|
To be determined based on structure for this initiative
|
Priority 4.3
Encourage Canadians to plan for the ends of their lives.
|
Action
|
By Whom
|
By When
|
4.3.1
|
Develop an inventory of tools for providers, individuals
and families.
|
Health Canada in partnership with CAG, QEOLCC, CHPCA,
provincial governments, CHA and others
|
Start immediately
|
4.3.2
|
Develop standards for health care settings admissions to
ensure that physicians or other health care practitioners
ask every patient or decision maker about their goals
regarding end-of-life care. (Follow example of long term
care sector.)
|
Provincial Ministries of Health Hospital Accreditation
(CCHSA) Canadian Medical Association (CMA)
|
2 years, followed by evaluation 22
|
Priority 5: Research
The challenge is to create an infrastructure (e. g.,
structure and process) with a critical mass of
interdisciplinary investigator research teams to support
all types of palliative care and end-of-life
4
research (basic science, clinical, health
services, population-based, psychosocial, ethics and
cultural) that will help prevent suffering and provide
optimal palliative and end -of-life care and allow
monitoring and dissemination to ensure the uptake of
research findings.
Priority 5.1: Human Resource Capacity Building
|
Action
|
By Whom
|
By When
|
5.1.1
|
Create capacity through multi-level training programs,
senior and junior scientist awards, clinician scientists,
buy-back salary, studentships and career awards, summer
institutes and undergraduate education.
|
Health Canada Secretariat to assemble a coordinating group
that includes representation from national planning
research group participants, governmental and
non-governmental national granting agencies, universities,
and private research foundations.
|
Group assembled by April 2002
Programs in place
by March, 2003
|
Priority 5.2: Infrastructure
|
Action
|
By Whom
|
By When
|
5.2.1
|
Develop a national network with central coordination
capacity and the ability to identify and organize specific
streams of activity with a view to creating centres of
excellence. (Responsibilities and function to be defined.)
|
Health Canada Secretariat to assemble a coordinating group
that includes representation from national planning
research group participants, governmental and
non-governmental national granting agencies, universities,
and private research foundations
|
Group assembled by April, 2002 Proposal: June, 2002
Network: November, 2002
Meeting in October, 2002 in Montréal at
International PC Congress
|
5.2.2
|
Creation of thematic centres of excellence supported by
the national palliative care community and universities,
with emphasis on national mentoring.
|
National Network created in 5.2. 1
|
June, 2003
|
5.2.3
|
Develop a funding strategy to find resources for research,
capacity building and leadership development, e. g.,
inventory of sources and terms of reference including
private, public, non-governmental and other partnership/
leveraging opportunities e. g., chronic diseases, stroke,
Canadian Palliative Care Research Initiative; Regional
Partnership Program for palliative care; Millenium Chair;
CIHR.
|
To be determined based on structure for carrying forward
this action plan
|
March, 2003
|
Priority 5.3: Informed Peer and Ethical Review
Actions for this priority will be developed later in the
process.
Priority 6: Support: Family, Caregiver and Significant
Others
The challenge is to ensure access and a
vailability
to
universal, quality and appropriate support for caregivers
and other family members.
Priority 6.1:
Put forward a family caregiver agenda to develop National
Caregiver Legislation.
|
Action
|
By Whom
|
By When
|
6.1.1
|
Develop a national caregiver action plan on end-of-life
care.
|
CCC-CCAN, CHPCA, CAPPE, QEOLCC and
|
September, 2003
|
6.1.2
|
Advocate for implementation of the national caregiver
action plan with strategic processes at all levels, e. g.
the primary health care initiative.
|
CCC-CCAN, CHPCA, CAPPE, QEOLCC, and others
|
2007
|
Priority 6.2:
Promote a mulitsectoral approach to reduce or alleviate
the financial burden for families.
|
Action
|
By Whom
|
By When
|
6.2.1
|
Introduce paid leave similar to parental leave.
|
Human Resources Development Canada
|
March, 2004
|
6.2.2
|
Amend current legislation for job protection in the Canada
Labour Code and provincial labour codes (The federal
government should provide the above for their employees in
the next collective agreement.)
|
F/ P/ T governments
|
March, 2004
|
6.2.3
|
Extend and increase the existing tax credit for
caregivers.
|
Canadian Customs and Revenue Agency (CCRA) and Ministry of
Finance
|
March, 2004
|
6.2.4
|
Ensure equitable access to out-of-pocket expense
reimbursement for end-of-life care e. g., medications,
equipment, respite care, transportation.
|
F/ P/ T governments
|
March, 2004
|
Priority 7: Surveillance
The challenge is to build, within the broad scope of
palliative/ end-of-life care for all diseases, all ages
and all locations, an effective, national,
population-based surveillance system to improve quality
care at end-of-life. This system will facilitate: i)
health service planning, program and policy development,
ii) clinical and outcomes measurement, and iii) social
and population research.
Priority 7.1:
Establish an accountable governance structure.
|
Action
|
By Whom
|
By When
|
7.1.1
|
Mandate a national Palliative Surveillance Workgroup to
lead the surveillance initiative, including development of
a business plan (see Action 7.3. 3).
Build on
earlier work such as CaPDN and Canadian Virtual Hospice.
|
National Steering Committee supported by the Secretariat
and Population and Public Health Branch, Health Canada.
|
May, 2002
|
Priority 7.2:
Establish common palliative definitions, indicators and
data set.
|
Action
|
By Whom
|
By When
|
7.2.1
|
Conduct consensus building exercise to reach agreement on
core indicators and a data set for palliative care.
|
National Palliative Surveillance Workgroup
|
March, 2003 and ongoing
|
7.2.2
|
Implement a pilot project on core indicators and data
set.
|
To be determined, with reporting to National Palliative
Surveillance Workgroup
|
December, 2003
|
7.2.3
|
Develop a population-based palliative data set and
comprehensive indicators.
|
National Palliative Surveillance Workgroup
|
December, 2005
|
7.2.4
|
Implement a population-based
palliative dat
a set and
comprehensive indicators.
|
National Palliative Surveillance Workgroup
|
December, 2007
|
Priority 7.3:
Secure funds to establish national palliative data
surveillance.
|
Action
|
By Whom
|
By When
|
7.3.1
|
Secure sustainable funds to support the national
palliative surveillance working group and to contract a
consulting group to develop a business plan.
|
Steering Committee and Secretariat
|
April, 2002
|
7.3.2
|
Secure funds to a) develop the business case, including
identification of existing databases and resources with
palliative related information, and b) carry out Priority
7. 2.
|
Steering Committee and Secretariat
|
October, 2002
|
7.3.3
|
Develop a business plan to fully detail the structures,
policies and funding resources required.
|
Contracted consulting group reporting to the Palliative
Surveillance Workgroup
|
September, 2002 28
|
Implementation Challenges
Participants worked in plenary and small groups to
identify implementation challenges related to the national
action plan. Following is a synthesis of these challenges
for consideration during next steps.
a. Attitudes The attitudes of Canadians towards
issues related to death and dying vary depending on a host
of factors such as background, culture, religion,
spirituality, ethnicity, education, values and ethics. The
action plan needs to take these attitudes into
consideration when designing educational materials,
programs and processes focused on enabling changes in
perspectives and attitudes.
b. Champions Leaders are required in each
jurisdiction and key issue area to advocate for the ideas,
visions, supports and resources required to implement the
plan and to enable buy-in of programs and services in the
action plan.
c. Coordination The end-of-life care area lacks
a mechanism for moving forward in a coordinated and
strategic manner. There is limited organizational capacity
and capability for basic activities such as information
sharing, priority setting and operationalizing the
plan.
Effective coordinating structures require a built-in
capacity to "think outside the box", e. g., system design,
knowledge application, models of care.
d. Definitions For the purposes of this
workshop, key terms were defined in the background
discussion paper. However, while developing action plans in
the seven working group areas, participants recognized the
need to come to agreement at a national level - for
implementation purposes - on key terms such as palliative
care and end-of-life care. To clarify this issue, a small
group of volunteers described three different perspectives
outlined in Appendix 5.
Other definitions required include: "good" end-of-life
care, surveillance system, outcomes, indicators, caregiver,
volunteer, healthcare provider, etc.
e. Inclusion An effective national plan must be
sensitive to and include a variety of health care
providers, volunteers, disciplines, organizations,
associations, cultures, ethnic groups and perspectives. The
perspectives of Aboriginal populations must be integrated.
Sometimes, in the interests of a national approach, the
unique richness of a variety of perspectives can be lost.
f. Managing Complexity The situation in
end-of-life care is complex, with several levels of
initiatives - local, regional, provincial, national - to be
addressed, as well as ethical issues such as privacy
legislation and security. Research demands are also
complex, e. g., given the number of Institutes at CIHR that
need to address research on end-of-life care, a special
advisor model may be required for coordination purposes.
Political environments are not fixed, e. g.,
changes of governments may lead to discontinuities in
policy. There are challenges in the relationships between
provincial and federal governments and Aboriginal/ Inuit/
Métis leadership.
g. Monitoring and Evaluation The plan needs to
be monitored on a regular basis and evaluated based on
benchmarks for success.
h. Resources Existing resources are
insufficient to address changing demographics in relation
to the demand for end-of-life care. Targeted funding is
required to implement the action plan, e. g., to develop
business plans and a marketing strategy, to free up
clinicians for time to do research, to support recommended
programs such as surveillance.
For resources to
flow to palliative and end-of-life care, this area needs to
be valued by those who have influence and positional power
in relation to resources.
i. Vision Although previous reports and
recommendations have developed national visions for
palliative and end-of-life care, each issue area also needs
its own vision that is part of a clear, national vision.
Structure
Following the identification of implementation challenges,
participants discussed structural models for implementation
of the action plan and created possible structures for
consideration by the Health Canada Secretariat on
Palliative and End-of-Life care. This activity involved
lively discussions and the development of a wide range of
options.
At a meeting of Steering Committee members and Working
Group Co-Chairs following the workshop, a small sub-group
of volunteers was created to review the draft structures,
and distill them into two or three choices. These choices
will be forwarded to the Secretariat for a decision on how
to move forward. The sub-group will be meeting shortly to
do its work.
Next Steps
The Steering Committee and Working Group Co-Chairs will
meet before the
end of May, 2002 to recommend a structure,
decide on next steps, and develop a strategy for
operationalizing the plan. The focus will be on an early
success in each of the seven action areas and a realistic
plan for longer term implementation.
Closing Remarks
In closing, Minister Carstairs thanked participants for
their contribution and reminded them of the importance of
collaboration in making the action plan a reality in the
day-to-day lives of Canadians. She reaffirmed her
commitment to palliative care and end-of-life care issues
and will continue to act as a strong supporter and
facilitator of this initiative.
Ms. Abby Hoffman, Director General, Health Care Strategies
and Policy Directorate, Health Canada, remarked on the team
effort and hard work of participants during sessions. She
also recognized that more work is required to finalize the
National Action Plan and that she appreciated
the
contributions of Steering Committee members.
Working Group Chairs and the Secretariat in this regard.
Health Canada will do its best to champion the plan while
recognizing that future resource and policy decisions
cannot be pre-judged. She noted that Health Canada is only
one of the partners in this initiative, and that she is
looking forward to collaborating with other stakeholders in
ensuring the success of this initiative.
Mr. Eugene Dufour, President, Canadian Hospice Palliative
Care Association, thanked participants on behalf of the
CHPCA and asked people to keep in mind that it is the
little successes that will help to move this initiative
forward.
The workshop closed with a song and prayer offered by Mr.
Ken Saddleback, Cultural Advisor, Kiwetahk
Cultural
Society, Alberta and Mr. Bob Cardinal, Aboriginal Cultural
Helper, Royal Alexandra Hospital, Alberta.
Appendix 1: Acronyms and Key Terms
AFN
|
Assembly of First Nations
|
CACC
|
Canadian Association for Community Care
|
CACL
|
Canadian Association for Community Living
|
CAD
|
Canadian Association of the Deaf
|
CAG
|
Canadian Association of Gerontology
|
CAPC
|
Centre to Advance Palliative Care
|
CAPCA
|
Canadian Association of Provincial Cancer Agencies
|
CaPDN
|
Canadian Palliative Data Network
|
CAPO
|
Canadian Association of Psychosocial Oncology
|
CAPPE
|
Canadian Association for Pastoral Practice and Education
|
CAR
|
Canadian Association of Radiologists
|
CARA
|
Community Academic Research Award (California)
|
CARO
|
Canadian Association of Radiation Oncologists
|
CARP
|
Canadian Association of Retired Persons
|
CAS
|
Canadian AIDS Society
|
CASW
|
Canadian Association of Social Workers
|
CBCN
|
Canadian Breast Cancer Network
|
CBS
|
Canadian Bioethics Society
|
CCC
|
Canadian Coalition of Churches
|
CCC - CCAN
|
Canadian Caregiver Coalition
|
CCHSA
|
Canadian Council on Health Services Accreditation
|
CCRA
|
Canadian Customs and Revenue Agency
|
CCS
|
Canadian Cancer Society or Canadian Cardiovascular
Society
|
CCCS
|
Canadian Critical Care Society
|
CFPC
|
College of Family Physicians of Canada
|
CHAC
|
Catholic Health Association of Canada
|
CHCA
|
Canadian Home Care Association
|
CHPCA
|
Canadian Hospice Palliative Care Association
|
CIHI
|
Canadian Institute for Health Information
|
CIHR
|
Canadian Institutes of Health Research
|
CMA
|
Canadian Medical Association
|
CME
|
Continuing Medical Education
|
CMHA
|
Canadian Mental Health Association
|
CNA
|
Canadian Nurses Association
|
CPhA
|
Canadian Pharmacists Association 33
|
CPHA
|
Canadian Public Health Association
|
CSN
|
Canadian Society of Nephrology
|
CSPCP
|
Canadian Society of Palliative Care Physicians
|
CSCC
|
Canadian Strategy for Cancer Control
|
CVH
|
Canadian Virtual Hospice
|
F/ P/ T
|
Federal/ Provincial/ Territorial
|
HC
|
Health Canada
|
HCCC
|
Health Charities Council of Canada
|
NACA
|
National Advisory Council on Aging
|
NAHO
|
National Aboriginal Health Organization
|
NCI
|
National Cancer Institute (US)
|
NCIC
|
National Cancer Institute of Canada
|
NCPB
|
National Cancer Policy Board
|
NCWC
|
National Council of Women of Canada
|
NGO
|
Non-government Organization
|
NHS
|
National Health Service (UK)
|
NIH
|
National Institutes of Health (US)
|
NVO
|
National Voluntary Organizations (Coalition of)
|
ORPCC
|
Ottawa Regional Palliative Care Centre
|
PHCTF
|
Primary Health Care Transition Fund
|
P/ T
|
Provincial/ Territorial
|
QEOLCC
|
Quality End-of-Life Care Coalition
|
RCPSC
|
Royal College of Physicians and Surgeons of Canada
|
RPCP
|
Regional Palliative Care Program
|
RPHCP
|
Rural Palliative Home Care Project
|
SSHRC
|
Social Sciences and Humanities Research Council
|
ST
|
Systemic Therapy
|
VON
|
Victoria Order of Nurses
|
WHO
|
World Health Organization
|
Key Terms
Collaboration
5
is a process through which parties who see different
aspects of a problem can constructively explore their
differences and search for solutions that go beyond their
own limited visions of what is possible. Collaboration
involves joint problem solvingand/ or decision making among
key stakeholders in a problem or issue.
Interactivity Continuum.
Five features are critical to the process: (1) the
stakeholders are interdependent (2) solutions emerge
by dealing constructively with differences (3) joint
ownership of decisions is involved (4) stakeholders
assume collective responsibility for the future direction
of the domain, and (5) collaboration is an emergent
process.
Nature of Collaborative Problems
- disparity of power and/ or resources - problems
complex, not well defined, scientific uncertainty -
stakeholders not clear, unorganized - differing
perspectives may lead to adversarial relationships -
incremental or unilateral efforts unsatisfactory -
existing approaches and processes insufficient.
Consensus
Most dictionary definitions equate "consensus" with
"unanimity", but at this workshop, the word will have its
more popular meaning, "substantial agreement".
We will measure the degree of consensus that has been
achieved by asking participants to express one of the
following positions:
- I agree with the proposal;
- I can live with the proposal;
- I disagree, or remain undecided.
Priorities
- are applied recommendations
- describe a major area of responsibility and commitment
in a challenge area
- require collaboration among stakeholders to be
successful.
Actions
- are measurable statements that define each priority
- describe clearly what is going to be done
- enable you to fulfill your priority
- provide a realistic stretch, i. e., they plan for
success
- enable buy-in from key stakeholders.
Stakeholders
- are organizations or individuals who have a strong
interest in the success of the National Action Plan on
End-of-Life Care, e. g., non-government organizations,
patients and their families, caregivers, healthcare
providers, Health Canada and other organizations.
Vision
- is a statement describing a preferred future for
end-of-life care in Canada
- looks five years ahead
- provides a realistic stretch
- enrols others through its focus and appeal.
Appendix 2: Key National Events: A Chronology
1984
|
Chronic Pain: A Monograph on the Management of Cancer
Pain, Report of the Health Canada Advisory Group on the
Management of Severe Chronic Pain
|
June 1995
|
Of Life and Death, Report of the Special Senate Committee
on Euthanasia and Assisted Suicide
|
June 2000
|
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
|
December 2000
|
Blueprint for Action by the National Stakeholders/ Quality
End-of-Life Care Coalition
|
February 2001
|
Canadian Strategy for Cancer Control Consultation
Conference (Working Group on Palliative Care)
|
March 2001
|
Senator Sharon Carstairs becomes Minister with Special
Responsibility for Palliative Care and advisor to the
Minister of Health on palliative care
|
June 2001
|
Secretariat on End-of-Life and Palliative Care established
in Health Canada
|
January 2002
|
Steering Committee Meeting for National Action Plan on
End-of-Life Care Workshop
|
March 2002
|
Invitational Workshop: National Action Planning Workshop
on End-of-Life Care, March 2-4, Winnipeg
|
March 2002
|
Implementation begins: Action Plan and Next Steps
|
Appendix 3: Presentation Slides - Dr. Neil Hagen
End of Life Care: A National Action Plan
The Challenge
- construct an action plan to assure that there is
quality end of life care for all Canadians
Introduction
- Can it work?
- Does it work?
- Will it make a difference?
The Ethical Imperative
- to relieve suffering
- to set health priorities to achieve primacy in relief
of correctable suffering
Definitions: Meeting Patients' Needs
- Palliative Care
- End of life Care
- Supportive Care
- Psychosocial Oncology
Elements of the Problem
- the medical model (science driving change)
- silos of care
- primary care services
- medical education
- supporting the care providers
- resear
ch and research capa
city
- funding ethos: funding items vs. governance of health
care delivery
The Root Problem:
System performance:
Why doesn't our health care system work as well as it
should?
Diffusion of Innovation: Examples
- Controlling scurvy in the British Navy
- Technology run wild: proliferation of CT scans in the
1970's
- promotion of condom use in San Francisco
Diffusion of Innovations
- Diffusion is the process by which innovation is
communicated through certain channels over time, among
the members of a social system. Everett M. Rogers 1995
- "What do we know about adoption of innovation?"
Jocelyn Lockyer. J Cont Educ in the Health
Professionals 1992; 12: 33-38.
- "Organizational aspects of health communication
campaigns: what works?" Thomas E. Backer, Everett M.
Rogers eds.
Diffusion of Innovation and Change Management
- Identify the poor outcome and the desired outcome to
be attained through the innovation
- identify all stakeholders and powerbrokers
- identify barriers to change
- set up strategies to effect measurable change through
consensus and developing a demand for the innovation
measure the change and reassess the outcome
National Efforts to address the Problem : USA
- NCI -designated cancer centres should play a central
role as agents of national policy in palliative care
- NCI should promote research in Palliative Care and
promote capacity building in Palliative Care research
- enhance data systems to evaluate the quality of care
delivered
- improve education in end-of-life care at the
undergraduate and post graduate levels
Canadian National Initiatives 1985-2002
- Report on the needs of people living with cancer in
Canada B. Adair, J Loveridge et al. 1986-1990
- pain was prevalent
- patients with pain often or usually were receiving no
medication
- of those receiving analgesics, they often did not
work well
- Canadian national initiatives 1985-2002 40
Cancer 2000
- October 1988: The CCS and Health and Welfare Canada
co-hosted a national conference: "Cancer control in
Canada: the challenge to coordinate".
- October 1989: the Cancer 2000 Task Force first meets.
Establishes nine expert panels, 80 submissions from
national organizations.
- Result: 62 Goals in 15 broad areas, including
palliative care, research and education. 117
recommendations in palliative care
Canadian National Initiative 1985-2002
- NCIC workshop 1994: Diffusion of Standards of Care
for Cancer Pain Hagen NA, Young J, Macdonald N. CMAJ
1995
- Tertiary cancer centres should routinely screen for
pain and should have expert multidisciplinary pain
clinics
- Faculties of Medicine should regard expertise in pain
and symptom control as core undergraduate and post
graduate curricular material
- Research funding agencies should establish processes
to promote research in
symptom control
Canadian National Initiatives: 1985-2002
- 1995 Senate Report: Of Life and Death
- Canadian national initiatives: 1985-2002
- 2000 Senate Report "Quality End-of-Life care: The
Right of Every Canadian"
Canadian National Initiatives: 1985-2002
Canadian Hospice and Palliative Care Association
- National Consensus-based Model to Guide Hospice
Palliative Care (to be released March 11, 2002)
- Quality End-of-Life Care Coalition
- a group of 25 national stakeholders
- created the "Blueprint for Action" (December 2000)
Canadian National Initiatives: 1985-2002
Canadian Strategy for Cancer Control
Canadian National Initiatives 1985-2002
Canadian Strategy for Cancer control: progress to date
- 12 working groups, extensive consultation
- Integration report
- Governance and Action Workshop
National Efforts to Improve End-of-Life Care: What has
Been Learned?
- Health care delivery, and the public policy that
supports health care delivery, change direction slowly
- not all ideas that ought to work, do work
- some positive change has occurred
Canadian National Initiatives 1985-2002
Successes to Date:
- research support in palliative care
- clinical
trials-NCIC - CIHR - palliative care program
development - Canadian Society of Palliative Care
Physicians - Palliative Medicine: a Case-Based
Manual - experience in national action plans
The Challenge
- construct an action plan to assure that there is
quality end of life care for all Canadians
Introduction
- Can it work?
- Does it work?
- Will it make a difference?
Appendix 4: Presentation Slides - Ms. Ceal Tournier and
Ms. Gaye Hanson
A Background and Discussion On: Quality of End Of Life
Care Paliative Care and Home and Community Care for
Aboriginal Peoples
Unique Characteristics of Aboriginal Peoples and
Communities
- Demographics: fast growing, young Aboriginal
population
- Loc
ation - Non-isolat
ed, semi-isolated,
isolated and remote
- Housing - Affordability and Quality
- Jurisdiction, Responsibility and Self-Government
- Local Access to Health Care
- Cost of Service Delivery
Cultural and Spiritual Considerations
- Diverse belief systems = need to demonstrate
sensitivity to individual cultural/ spiritual beliefs
and practices
- Experience of death and traditions, beliefs and
culture surrounding it need to be fully supported
Planning Issues
- Cultural and Spiritual Considerations - are different
among Aboriginal groups
- Increasing Aboriginal Research Capacity vital to
assuming control over research and health
- Ethics, Values and Policy Related Challenges -Complex
- Health Care Delivery Models for new innovative health
care models
Support: Family, Caregivers and Significant Others
- Health and safety concerns
- Lack of local expertise, adequate space and equipment
- Respite and personal support for caregivers
Surveillance: General Population
- Increased demand for services
- Decreased supply of informal caregivers
- Increased devolution of health care
- Emphasis on consumer-directed and self-managed care
Summary of Responses to Interviews and
Questionnaires
- Priorities
- Basic requirements
- Care at home
- Respect and support for all religious, spiritual and
cultural beliefs
Action
- Aboriginal participation in:
- Identifying
issues of Aboriginal peoples in palliative/ end-of-life
care - Based on that information, develop new
delivery models for Aboriginal Peoples -
Documenting delivery models which are best practices
- Conduct research to identify models for Aboriginal
Peoples palliative care
- Do needs assessments to include urban Aboriginal
peoples
- Identify jurisdictional barriers and create a
coordination mechanism to eliminate these
- Educate and train an appropriate number of health
workers to work with Aboriginal Peoples, regardless of
residence or location
- Provide supervisory and professional development for
health workers in Aboriginal communities
Appendix 5: Definitional Issues - National Action Planning
Workshop
While the National Action Planning Workshop began with
instructions that we were not to address the specific
word-smithing of definitions, the issue of definitions
became an issue for the workshop. The goals of clear vision
and clear communication of the issues to the public and
policy makers require a clear definition of the core issue
being addressed.
It became apparent during the workshop that there were at
least two fundamentally different conceptions of the core
issue.
Model 1: Palliative Care
The first conception understands palliative care as the
overarching issue. Here, end-of-life care is a concept
within palliative care and the focus of the workshop and
the national strategy is the promotion of palliative care
services and the philosophy of palliative care. It might be
visualized as:
This understanding emphasizes the inter-disciplinary focus
and holistic approach of palliative care as the context for
end-of-life-care. It is unclear, however, how to
distinguish between palliative care as a philosophy
practiced by many in end-of-life care and palliative care
as a specialty practice. During the workshop both
palliative care as practice and palliative care as a
philosophy were apparent.
Model 2: End-of-Life Care
The second conception has end-of-life care as the central
issue. Here, palliative care is a component of end-of-life
care. Palliative care focuses on issues beyond end-of-life
care, such as care for those with chronic illness and
potentially life-threatening illness in remission. In
addition, end-of-life care focuses on a number of issues
beyond the scope of palliative care, such as advance care
planning (which could/ should be undertaken even by healthy
and young persons who may experience an unanticipated,
acute, life-threatening event such as an accident). This
conception can be visualized as:
Model 3: Goals of Care
In another conception the relationship of palliative care
to end-of-life care is captured over time:
This conception seems to focus on the goals of care over
time:
Summary
It seems clear that the National Action Planning Workshop
needs agreement on the focus in order for the vision and
messages to be clear. Some questions need to be
addressed:
- Is there agreement that the urgent need is to
focus
on improving end-of-life care?
- Is the urgent issue to promote the philosophy of
palliative care generally?
- Is palliative care a philosophy or a specialty
practice?
- In a desire to promote the expansive and inclusive
philosophy of palliative care, might the National
Action Planning Workshop diffuse the issues and fail to
focus on improved care of dying?
Following presentation of these models, participants were
asked to indicate by a show of hands which of Models 1 and
2 they used in their work. A majority chose Model 2, but
a significant minority chose 1, thus illustrating the
challenge regarding development of a definition that can be
used by all stakeholders.
Appendix 6: Organizati
ons
Following is a brief overview of organizations that are
either represented on the Steering Committee for this
initiative or involved with palliative and end-of-life care
in Canada.
- Aboriginal Health Institute (AHI) was
established to increase the ability of Inuit to
communicate and share information and expertise with
other Inuit across the north, reducing the isolation
felt by many health workers, communities and
individuals. (
www.tapirisat.ca )
- ALS Society of Canada (ALS) is small,
voluntary national health organization committed to
providing care and finding a cure for ALS. (
www.als.ca
)
- Arthritis Society is a national, non-profit
organization devoted to funding and promoting research
into the underlying causes and subsequent cures for
arthritis, and to promoting the best possible care and
treatment for people with arthritis. (
www.arthritis.ca
)
- Assembly of First Nations (AFN) is the
national representative/ lobby organization of the
First Nations in Canada. There are over 630 First
Nation's communities in Canada. The AFN Secretariat is
designed to present the views of the various First
Nations through their leaders in areas such as:
Aboriginal and Treaty Rights, Economic Development,
Education, Languages and Literacy, Health, Housing,
Social Development, Justice, Taxation, Land Claims,
Environment, and a whole array of issues that are of
common concern and arise from time to time. (
www.afn.ca
)
- Association of Canadian Medical Colleges
(ACMC): ACMC provides the national voice for academic
medicine in Canada, contributing to improving the
health of all Canadians through medical education and
biomedical and health research. (
www.acmc.ca
)
- Association des hôpitaux du
Québec (AHQ) is an umbrella organization
offering short-term care, rehabilitation, residential
and long-term care services to Quebec residents. The
Association and its members believe in the importance
of developing and maintaining accessibility to
high-quality care and service for everyone. (
www.ahq.org/
apropos
)
- Association quèbècoise de soins
palliatifs operates within Québec to
provide a multidisciplinary approach to palliative
care. It also promotes education in the community and
training of personnel. (
www.aqsp.org
)
- BC Centre for Excellence in HIV/ AIDS is fully
supported by the BC Ministry of Health, provides
education to healthcare providers, conducts natural
history and observational studies, develops innovative
laboratory tests, and carries out clinical trials. Its
drug program is at the core of the Centre's activities.
(
cfeweb.hivnet.ubc.ca
)
- Canada's Association for the Fifty-Plus/ Canadian
Association of Retired Persons (CARP) is a
non-profit organization whose mandate is to promote the
rights and quality of life of mature Canadians. (
www.50plus.com
)
- Canadian AIDS Society (CAS) is a coalition of
community-based AIDS organizations. CAS advocates on
behalf of people and communities affected by HIV/ AIDS,
facilitates the development of programs, services and
resources for
member groups, and provides a
national framework for community-based participation in
Canada's response to AIDS. (
www.cdnaids.ca
)
- Canadian Association for Community Living
(CACL) is a national association dedicated to
promoting the participation of people with intellectual
disabilities in all aspects community life. (
www.cacl.ca
)
- Canadian Association for Community Care (CACC)
promotes the development of high-quality, flexible,
responsive and accessible community care services in
Canada. It also supports research, education and
training on issues related to community care. (
www.cacc-acssc.com
)
- Canadian Association for Pastoral Practice and
Education (CAPPE) is committed to the
professional education, certification and support of
those endorsed by their faith communities in ministries
of pastoral care, counseling and education. (
www.cappe.org
)
- Canadian Association of Provincial Cancer
Agencies (CAPCA) is a national organization
consisting primarily of provincial cancer agencies. It
is committed to making a significant contribution to
Canada's overall cancer control effort by reducing the
incidence of cancer, the mortality from cancer, and by
improving the quality of life of those living with
cancer. (
www.capca.ca
)
- Canadian Association of Psychosocial Oncology
(CAPO) is the oldest interdisciplinary professional
association in North America dedicated to helping
people to cope with cancer by encouraging
interdisciplinary excellence in psychosocial research,
education, and clinical practice in oncology. (
www.capo.ca
)
- Canadian Association of Retired Persons
(CARP): see Canada's Association for the Fifty-Plus.
- Canadian Association of Social Workers (CASW)
provides a national leadership role in strengthening
and advancing the social work profession in Canada. It
promotes social justice and well-being for all Canadian
residents and furthers the interests of social work
internationally. (
www.casw-acts.ca/
)
- Canadian Association of the Deaf (CAD) is the
national, non-profit consumer organization of the Deaf
people of Canada. It combines the purposes of a
research and information centre, an advisory council, a
representative body, a self-help society, and a
community action organization. (
www.cad.ca
)
- Canad
ian Association on Geron
tology (CAG) is a
national association which provides leadership in
matters relating to the aging population in Canada. It
helps to foster research, education, and policy aimed
at improving the quality of life of the elderly in
Canada. (
www.cagacg.ca
)
- Canadian Bioethics Society (CBS) seeks to
bring together persons and organizations concerned and
involved with the ethical and humane dimensions of
health care. (
www
bioethics.ca/english
)
- Canadian Breast Cancer Network (CBN) is funded
by Health Canada and acts as a link between breast
cancer groups across Canada to broaden their resources,
provide educational activities, and share
information. (
www.cbcn.ca
)
- Canadian Cancer Society (CCS) is a national,
community-based organization of volunteers, whose
mission is the eradication of cancer and the
enhancement of the quality of life of people living
with cancer. Their work is focused in five areas:
(i) funding cancer research through their research
partner the National Cancer Institute of Canada (NCIC),
(ii) providing leadership in the fight against
cancer, e. g., through the Canadian Strategy for
Cancer Control (CSCC), (iii) helping Canadians
prevent cancer, (iv) keeping Canadians informed
about cancer, and (v) helping Canadians who live
with cancer. ( www.cancer.ca)
- Canadian Cardiovascular Society (CCS) is a
non-profit medical society that represents over 1, 000
cardiologists, cardiac surgeons, and cardiac
researchers working to advance the cardiovascular
health and care of Canadians through leadership in
professional development, advocacy, and the promotion
and dissemination of research. (
www.ccs.ca
)
- Canadian Caregiver Coalition (CCC-CCAN) is a
bilingual alliance composed of individuals, groups, and
organizations working to influence policy and to
promote awareness and action on care giving issues in
healthcare policy. (
www ccc-ccan.ca
)
- Canadian Council of Churches (CCC-CCE)
encourages ecumenical understanding and action
throughout Canada and relates to the World Council of
Churches and to other agencies serving the world-wide
ecumenical movement. From time to time, the Council
undertakes special projects and initiatives. (
www.ccc-cce.ca/english
)
- Canadian Council on Health Services
Accreditation (CCHSA) is a non-profit,
non-governmental
organization with approximately
1,800 organizations voluntarily participating in an
accreditation program based on national standards. (
http://www.cchsa.ca/site/pt_link.php?query=Message&plain=1
)
- Canadian Critical Care Society (CCCS)
represents Adult and Paediatric Critical Care Medicine
physicians in Canada. It espouses the philosophy of
collaborative multidisciplinary practice to promote
research, education and patient care in Critical Care
Medicine. (
http://critcare.lhsc.on.ca/ccc/cccs/main.html
)
- Canadian Healthcare Association (CHA) is the
federation of provincial and territorial hospital and
health organizations, representing a broad continuum of
care across Canada. It is committed to improve the
delivery of publicly funded health services in Canada
through policy development, advocacy and leadership. (
http://www.cha.ca/
)
- Canadian Home Care Association (CHCA) is a
national organization which influences the development
of national policy regarding the role of home care and
community support as an integral and mandatory
component of the health system. (
www.cdnhomecare.on.ca
)
- Canadian Hospice Palliative Care Association
(CHPCA) is the national association providing
leadership in the pursuit of excellence in care for
persons approaching death so that the burdens of
suffering, loneliness and grief are lessened. The
Association aims to increase awareness, develop
national standards of practice and support research on
hospice palliative care in Canada. (
www.cpca.net
)
- Canadian Institutes of Health Research (CIHR):
is Canada's premier federal agency for health research.
Its objective is to excel in the creation of new
knowledge and its translation into improved health for
Canadians, more effective health services and products
and a strengthened healthcare system. (
www.cihr.ca
)
- Canadian Medical Association (CMA) is a
national voluntary professional organization
representing more than 50, 000 physicians across the
country. It has developed a Code of Ethics to guide
physicians in areas of traditional medical ethics, as
well as in human rights and recent bioethical
discussions. (
www.cma.ca/cma/
)
- Canadian Mental Health Association (CMHA)
exists to promote the mental health of all people and
to serve mental health consumers, their families and
friends through the combined efforts of volunteers and
staff in locally run organizations throughout Canada. (
www.cmha.ca/english
)
- Canadian Nurses Association (CAN) is a
federation of 11 provincial and territorial nursing
associations representing more than 110,000 registered
nurses. It promotes high standards of practice,
education, research and administration in order to
advance the quality of nursing in the interest of the
public. (
http://www.cna-nurses.ca/_frames/aboutcna/aboutusframe.htm
l)
- Canadian Pharmacists Association (CphA) is the
national voluntary organization of pharmacists
committed to establishing
the pharmacist as the hea
lth
professional whose practice ensures optimal patient
outcomes.
( http://
www.cdnpharm.ca/cphanew/about/abframe.htm
)
- Canadian Public Health Association (CPHA) is
the national, independent, not-for-profit, voluntary
association that represents public health in Canada and
links to the international public health community.
CPHA's members believe in universal and equitable
access to the basic conditions which are necessary to
achieve health for all Canadians. (
www.cpha.ca
)
- Canadian Society of Nephrology (CSN) promotes
the highest quality of care for patients with renal
diseases by setting high standards for medical
training, education and research to increase the
knowledge, skills and attitudes of
nephrologists.
(
csn.medical.org
)
- Canadian Society of Palliative Care Physicians
(CSPCP) has more than 160 members: the major issues of
interest are the CHPCA Norms of Practice and palliative
care education for physicians at all levels.
- Canadian Virtual Hospice is a Government of
Canada web-based initiative, announced in November
2001, that is designed to be of benefit to palliative
care patients and their families, healthcare providers
and researchers across Canada. (
web.
hc-sc.gc.ca/ahc-asc/media/nr-cp/2001/2001_121_e.html
)
- Caregiver Network Inc. was created to help
caregivers of the elderly and ill, by providing
information on the Internet, in a newsletter, in a TV/
video series, and through seminars.
www.caregiver.on.ca
)
- Catholic Health Association of Canada (CHAC)
is a national Christian community committed to
healthcare in the tradition of the Catholic Church. It
is concerned with health in all its aspects: physical,
emotional, spiritual, and social. (
www.chac.ca
)
- Childhood Cancer Foundation ~ Candlelighters
Canada is a national volunteer charitable
organization that works with professional and volunteer
organizations and is dedicated to improving the quality
of life for families experiencing the effects of
childhood cancer through the provision of resources,
parent support and the promotion of research. (
www.candlelighters.ca
)
- Coalition of National Voluntary Organizations
(NVO) is an umbrella, not-for-profit coalition
comprised of over 130 national voluntary charities
active in health and social services, the environment,
justice, education and international
development.
(
www.nvo-onb.ca
)
- College of Family Physicians of Canada (CFPC)
is a national voluntary organization which promotes
high standards of medical education and care in family
practice. (
www.cfpc.ca/about_
us/mission.asp
)
- Community Hospice Association of Ontario
(CHAO) promotes, represents and assists the development
and enhancement of community hospice services including
those services for children. These services include
respite care, grief counseling and friendly visiting. (
http://www.pogo.on.ca/guide/provi_details.php?org_id=13
)
- Federal/ Provincial/ Territorial Health
Ministers' Meeting at St. John's, September 26,
2001: agreement and progress on a number of initiatives
were announced on behalf of federal, provincial and
territorial Health Ministers. Ministers viewed a
presentation on palliative care and discussed current
pressures and directions that are being pursued to
ensure Canadians have access to high quality
end-of-life care and support.
- Frosst Health Care Foundation is an
organization dedicated to providing patients, patients'
organizations and health charities with a more unified
voice in the ongoing healthcare reform discussions in
Canada. The Foundation's main objective is to ensure
that the needs and values of patients continue to be
the first priority in health care. (
www.fondationfrosst.ca
)
- GlaxoSmithKline Foundation (GSK) matches
personal contributions of eligible employees and
retirees of GSK to qualifying educational institutions,
health and human service organisations, and arts and
cultural organisations in the United States.
(www.gsk.com
)
- Health Charities Council of Canada (HCCC)
represents national health charities which bring
together a wealth of knowledge, expertise, experience
and resources, to improve the health of Canadians and
strengthen Canada's health system. (
www.healthcharities.ca
)
- Heart and Stroke Foundation of Canada (HSFC)
is a Federation of Provincial and National
Foundations
led and supported by more than 250,000 volunteers. The
Foundation receives no core operational funding from
government sources and is dedicated to improving the
health of Canadians by preventing and reducing
disability and death from heart disease and stroke
through research, health promotion and advocacy. (
www.heartandstroke.ca
)
- Huntington Society of Canada (HSC) is a
national network of volunteers and professionals
committed to finding new treatments and ultimately a
cure for
Huntington disease (HD), and to improve
the quality of life for people with HD and their
families. (
www.hsc-ca.org/
)
- Inuit Tapirisat (ITC), was established in 1971
as the national voice for the Inuit of Canada. One of
their objectives is to take measures at the national
level, along with other national Inuit organizations,
to protect and promote Inuit culture, language, values,
health, education, justice and any other matter that
impacts upon the ability of Inuit to shape the future
of their society within Canada. (
www.tapirisat.ca
)
- Kidney Foundation of Canada (KFOC) consists of
volunteers, patients, donors and staff members working
together to help Canadians suffering from kidney
failure and related disorders.
(www.kidney.ca
)
- National Aboriginal Health Organization (NAHO)
is an Aboriginal designed and controlled body dedicated
to improving the physical, mental, emotional, social
and spiritual health of Aboriginal peoples. It is their
fundamental belief that the advancement and sharing of
knowledge in the field of Aboriginal health is a key to
empowering Aboriginal peoples. (
www.aboriginalcanada.gc.ca/abdt/interface/interface2.nsf/engdoc/1.html
)
- National Advisory Council on Aging (NACA)
consists of up to 18 members from all parts of Canada
and all walks of life, who assist and advise the Mini
ster of Health on all matters related to the aging of
the Canadian population and the quality of life of
seniors. A team of federal public service employees
located in Ottawa provides support for the Council's
operations. (
www.hc-sc.gc.ca
/seniors-aines/seniors/english/naca
)
- National Council of Women of Canada (NCWC) is
national, non-partisan federation of voluntary
organizations working to improve conditions for women,
families and communities through education, empowerment
and community involvement. (
www.ncwc.ca
)
- National Cancer Institute of Canada (NCIC)
with its partner the Canadian Cancer Society, and with
the Terry Fox Foundation, undertakes and supports
cancer research and related programs in Canada that
will lead to reduction of the incidence, morbidity and
mortality from cancer. (
www.ncic.cancer.ca
)
- Quality End-of-Life Care Coalition (QEOLCC)
represents a broad cross-section of stakeholders who
wish to be part of the process of creating a national
strategy for end-of-life care in Canada. Members
include:
- ALS Society of Canada -Arthritis
Society - Canadian AIDS Society -Canadian
Association for Community Care - Canadian
Association of Social Workers -Canadian Association of
the Deaf - Canadian Association on Gerontology
-Canadian Breast Cancer Network - Canadian Cancer
Society -Canadian Healthcare Association -
Canadian Home Care Association -Canadian Hospice
Palliative Care Association - Canadian Pharmacists
Association -Caregiver Network Inc. - CARP:
Canada's Association for the Fifty-Plus -Childhood
Cancer Foundation (Candlelighters) - Coalition of
National Voluntary Organizations -Frosst Health Care
Foundation - GlaxoSmithKline Foundation -Heart and
Stroke Foundation of Canada - Huntington Society
of Canada -National Advisory Council on Aging -
National Council of Women of Canada -VON Canada
- Regional Health Authority-Central Manitoba Inc
(RHA) provides leadership in implementing a quality
community needs-based health system through education,
consultation and the allocation of resources to improve
health in the Central Region of Manitoba. (
www.rha-central.mb.ca
)
- Royal College of Physicians and Surgeons of
Canada (RCPSC) is a national, private, nonprofit
organization of medical specialists dedicated to
ensuring the highest standards and quality of health
care. (
rcpsc.medical.org/english
)
- St. John Ambulance Canada is a world-wide,
non-denominational charitable organization dedicated to
enabling Canadians to improve their health, safety and
quality of life by providing training and community
service. (
www.sja.ca/english
)
- Victorian Order of Nurses for Canada (VON) is
a national healthcare charity that cares for the lives
and well being of Canadians in their homes and local
communities while contributing to the development of
health and social policy in Canada. (
www.von.ca
)
- Veterans Affairs Canada (VAC) offers a variety
of services to veterans, including a Pastoral Care
program and Between Friends support groups.
- Volunteer Canada is a national organization
committed to supporting volunteerism and civic
participation through ongoing programs and special
projects. Its board members, partners and members
represent hundreds of different
communities across
Canada. (
www.volunteer.ca
)
Appendix 7: Participants
Name
|
Affiliation
|
Prov
|
Tel
|
Ms. Deborah Adams
|
Program Manager, The Temmy Latner Centre for Palliative
Care, Mount Sinai Hospital
|
ON
|
416-586-4800, x 6776
|
Mr. Michael Aherne
|
Associate, Institute for Professional Development/ Pallium
Project Consultant
|
AB
|
780-413-8195
|
Dr. Pierre Allard
|
Director, Institute of Palliative Care, Elizabeth
Bruyère Centre
|
ON
|
6
13-562-6301
|
Mr. Barry Ashpole
|
Chair, Communications and Public Policy, Ontario
Palliative Care Association
|
ON
|
905-309-6208
|
Ms. Heather Balfour
|
District Management Consultant, Saskatchewan Health
|
SK
|
306-787-3216
|
Ms. Sharon Baxter
|
Executive Director, Canadian Hospice Palliative Care
Association
|
ON
|
613-241-3663, x227
|
Ms. Mary Anne
|
Bourque Chaplain, SCO Health Services
|
ON
|
613-562-0050, x1674
|
Dr. Michel Brazeau
|
CEO, Royal College of Physicians & Surgeons
|
ON
|
613-730-6205
|
Ms. Carleen Brenneis
|
Program Director, Regional Palliative Care Program,
Capital Health
|
AB
|
780-450-7767
|
Ms. Pam Brown
|
Director, Regional Palliative Care Service, Calgary Health
Region
|
AB
|
403-943-0252
|
Dr. Fred Burge
|
Research Director and Associate Professor, Dalhousie
University, Department of Family Medicine
|
NS
|
902-473-4742
|
Mr. Brian Burnett
|
Facilitator
|
MB
|
204-261-5322
|
Mr. Robert Cardinal
|
Aboriginal Cultural Helper, Royal Alexandra Hospital
|
AB
|
780-477-4425
|
Ms. Donalda Carson
|
Executive Director, Prince George Hospice Society
|
BC
|
250-563-2551
|
The Honourable Senator Sharon Carstairs
|
P. C., Leader of the Government in the Senate and Minister
with Special Responsibilty for Palliative Care
|
ON
|
613-949-7123
|
Ms. Janet Carver
|
Palliative Care Coordinator, Lunenburg and Queens Counties
|
NS
|
902-521-0081
|
Ms. Andrea Challis
|
Research Coordinator, Health Canada
|
ON
|
613-957-7774
|
Ms. Cheryl Chapman
|
Health Canada
|
ON
|
|
Mr. David Cheperdak
|
Executive Director, Victoria Hospice Society
|
BC
|
250-370-8725
|
Ms. Gail Chester
|
Social Worker, Yukon Home Care Program
|
YT
|
867-667-3624
|
Dr. Paula Chidwick
|
Clinical Ethics Fellow, University of Toronto Joint
Centre for Bioethics
|
ON
|
416-978-1898
|
Dr. Harvey Chochinov
|
Professor, Department of Psychiatry, University of
Manitoba/ Cancer Care Manitoba
|
MB
|
204-787-3380
|
Mrs. Velda Clark
|
Director, Palliative Care Services, Regina Health
District
|
SK
|
306-766-2665
|
M
rs. Margaret E. Clarke
|
Executive Director, Hospice & Palliative Care
Manitoba
|
MB
|
204-889-8525
|
Dr. Robin Cohen
|
Research Director, Palliative Care, McGill University
|
QC
|
514-934-1934, x35158
|
Mr. Duncan Conrad
|
Program Consultant, Health Promotion and Rehabilitation
Directorate, Veterans Affairs Canada
|
PEI
|
902-566-8111
|
Dr. Marlyn Cook
|
Physician, IFNA Physician Services
|
ON
|
807-737-3030
|
Ms. Shelly Cory
|
Senator Carstairs' Office
|
ON
|
613-949-7123 58
|
Dr. Michael Coughlin
|
Ethics Consultant, St. Joseph's Healthcare, Hamilton
|
ON
|
905-522-1155, x3099
|
Ms. Stephanie Craig
|
Senator Carstairs' Office
|
ON
|
613-949-7123
|
Dr. Patrick Critchley
|
Palliative Care Physician, QEII HSC & Dalhousie
University
|
NS
|
902-473-2878
|
Ms. Lynn Cummings
|
Nurse Manager, Victoria Hospice Society
|
BC
|
250-370-8848
|
Ms. Eleanor Davies
|
Past President, Chair of Advocacy, Active Volunteer,
Hospice Palliative Care Association, PEI
|
PEI
|
902-569-1670
|
Dr. Mervyn Dean
|
Regional Medical Director, Palliative Care, Western Health
Care Corporation
|
NF
|
709-637-5000, x5414
|
Ms. Jo Ann Derrickson
|
Administrator, Pine Acres Home
|
BC
|
250-768-7676
|
Ms. Linda Doody
|
Manager, Seniors Programs, Department of Health and
Community Services
|
NF
|
709-729-5246
|
Ms. Kirstin Doull
|
Senator Carstairs' Office
|
ON
|
613-949-7123
|
Dr. Michael Downing
|
Medical Director, Victoria Hospice Society
|
BC
|
250-370-8715
|
Dr. Deborah Dudgeon
|
Director of Palliative Care Medicine Queen's
University
|
ON
|
613-533-6000, x77694
|
Mr. Eugene Dufour
|
President, Canadian Hospice Palliative Care
Association
|
ON
|
519-272-8210, x2621
|
Dr. Serge Dumont
|
Professor, School of Social Work, Laval University
|
QC
|
418-656-2131
|
Ms. Janet Dunbrack
|
Consultant
|
QC
|
514-932-1253
|
Rev. Dr. Neil Elford
|
Manager, Supportive Care Services, Royal Alexandra
Hospital
|
AB
|
780-477-4195
|
Dr. Robin Fainsinger
|
Director, Division of Palliative Care Medicine, Dept. of
Oncology, Un
iversity of Alberta/ Clinical Dir
ector,
Region
al Palliative Care Program
|
AB
|
780-477 4038
|
Mr. Brian Falck
|
Consultant, Manitoba Health
|
MB
|
204-788-6637
|
Mme. Justine Farley
|
Medecin, Association québécoise des soins
palliatifs
|
QC
|
514-345-3511, x3395
|
Dr. Konrad Fassbender
|
Senior Research Associate, Alberta Cancer Board Palliative
Care Research Initiative
|
AB
|
780-450-7525
|
Ms. Alma Favel-King
|
National Coordinator, Home & Community Care Assembly
of First Nations
|
ON
|
613-241-6789
|
Dr. Margaret Fitch
|
Coordinator Supportive Care/ Head Oncology Nursing,
Cancer Care Ontario
|
ON
|
416-480-5891
|
Dr. Gerri Frager
|
Medical Director, Pediatric Palliative Care, IWK
Health Centre/ Dalhousie University
|
NS
|
902-470-7262
|
Dr. Gillian Fyles
|
Medical Leader, Pain & Sympton Management/ Palliative
Care Program, Centre for the Sourthern Interior, BC Cancer
Agency
|
BC
|
250-712-3994
|
Dr. Pierre Gagnon
|
Psychiatre, professeur, Maison Michel Sarrazin, CHUQ,
Université Laval
|
QC
|
418-691-5075
|
Dr. Romayne Gallagher
|
Director, Division of Palliative Care, University of
British Columbia
|
BC
|
604-822-1603
|
Ms. Leslie Gaudette
|
Acting Chief, Treatment and Outcomes Surveillance,
Health Canada, Cancer Division
|
ON
|
613-946-5159
|
Mr. Gary Goldsand
|
Coordinator, Clinical Ethics Services, Royal Alexandra
Hospital
|
AB
|
780-491-5330
|
Mr. Trent Gow
|
Director, Hospice Association of Ontario
|
ON
|
416-777-0449, x28
|
Ms. Avis Gray
|
Facilitator
|
MB
|
204-453-5102
|
Ms. Roda Grey
|
Senior Health Policy Analyst, FNIB, Health Canada
|
ON
|
613-954-0757
|
Dr. Neil Hagen Head
|
Division of Palliative Medicine, University of Calgary
|
AB
|
403-670-2304
|
Ms. Mary Elizabeth Harriman
|
Director, Policy Coordination and External Relations,
Heart and Stroke Foundation of Canada
|
ON
|
613-569-4361
|
Dr. Laura Hawryluck
|
Physician Leader, Ian Anderson Continuing Education
Program in End of Life Care/Assistant Professor Critical
Care Medicine, University of Toronto
|
ON
|
416-946-7899
|
Ms. Karen Henderson
|
Founder, Caregiver Network/ How to Care
|
ON
|
416-323-1090
|
Ms. Lorna Hillman
|
President, Canadian Caregiver Coalition / La
coalition canadienne de aidantes et aidants natunels
|
ON
|
250-3
84-0408
|
Ms. Mary Hitchman
|
Provincial President, New Brunswick Palliative Care
Association/ Representative, CHPCA
|
NB
|
506-623-3406
|
Ms. Abby Hoffman
|
Director General, Health Care Strategies and Policy
Directorate, Health Canada
|
ON
|
613-946-1791
|
Rev. Glen Horst
|
Coordinator of Pastoral Care Services, Riverview Health
Centre
|
MB
|
204-478-6281
|
Dr. Mary Anne Huggins
|
Director, Palliative Care Program, Princess Margaret
Hospital / University Health Network
|
ON
|
416-946-2135
|
Ms. Mary Hughes
|
Power Director, Acute and Continuing Care, Department of
Health and Social Services, Government of PEI
|
PEI
|
902-368-6132
|
Ms. Kendra Hunter
|
Policy Analyst, Primary Health Care Division, Health
Canada
|
ON
|
613-957-3053
|
Ms. Denise Hycha
|
Palliative Care Program Coordinator David Thompson Health
Region
|
AB
|
403-341-2168
|
Ms. Janina Jaw
|
Community Living Worker
|
NU
|
867-897-8877
|
Ms. Laurianne Jodouin
|
Program Manager, Palliative Benefits Program, Home
and Community Care Specialist, BC Ministry of Health
Services
|
BC
|
250-952-1174
|
Ms. Sandy Johnson
|
Executive Director, Hospice Saint John
|
NB
|
506-632-5723
|
Rev. Dr. Dale Johnson
|
Clinical Coordinator, Spiritual Care, Vancouver Hospital
& Health Sciences Centre
|
BC
|
604-875-4643
|
Dr. Nuala Kenny
|
Chair, Department of Bioethics, Dalhousie University
|
NS
|
902-494-3801
|
Ms. Rosella Kinoshameg
|
Vice President, Aboriginal Nurses Association of Canada
|
ON
|
705-859-2594
|
Ms. Barbara Korabek
|
Director Home Care, Calgary Health Region, Canadian
Home Care Association
|
AB
|
403-943-1640
|
Ms. Vivien Lai
|
Senior Policy Advisor, Alberta Health & Wellness
|
AB
|
780-415-2850
|
Dr. Bernard J. Lapointe
|
Directeur, Division des soins palliatifs, Hopital general
juif Sir Mortimer B. Davis
|
QC
|
514-340-8222
|
M. Jacques Lapointe
|
Chef du service de pastorale du (CHUM) Centre Hospitalier
de l'Université de Montréal/ Association
Canadienne pour la pratique et l'éducation
pastorales
|
QC
|
514-890-8000, x25021
|
Dr. Francis Lau
|
Director and Associate Professor, Health Information
Science, University of Victoria
|
BC
|
250-721-8576 60
|
Dr. Neil Lazar
|
Critical Care Medicine, University Health Network &
University of Toronto
|
ON
|
416-340-3438
|
Ms. Janis Leiterman
|
Director, Clinical Services, Victorian Order of Nurses for
Canada
|
ON
|
613-233-5694
|
Dr. S. Lawrence Librach
|
Director, The Temmy Latner Centre for Palliative Care, Mt.
Sinai Hospital/ Director, Palliative Care, Sunnybrook
& Women's College Health Science Centre
|
ON
|
416-586-4800, x6773
|
Ms. Liliane Locke
|
Program Director, Palliative Care, SCO Health Service
|
ON
|
613-562-0050, x1294
|
Ms. Emmie Luther-Hiltz
|
Coordinator, Cancer Patient Family Network, Cancer Care
Nova Scotia
|
NS
|
902-473-2637
|
Mr. Jay Lynch
|
Project Coordinator, University of Ottawa Institute of
Palliative Care
|
ON
|
613-562-0050
|
Ms. Catherine MacDonald
|
Senator Carstairs' Office
|
ON
|
613-949-7123
|
Ms. Nancy MacDonald
|
Baffin Regional Occupational Therapist, Department of
Health & Social Services
|
NU
|
867-975-4808
|
Dr. Neil MacDonald
|
Bioethics Programme, Clinical Research Institute of
Montreal
|
QC
|
514-987-5620
|
Mr. Chris MacDonald
|
Department of Philosophy, Dalhousie University
|
NS
|
902-429-5771
|
Dr. Joan MacIsaac
|
Director, Palliative Care Services, Queens Health
Region
|
PEI
|
902-368-4781
|
Ms. Sandra MacLeod
|
Policy Analyst, Health Services Division, Health
Canada
|
ON
|
613-941-5217
|
Mr. Vincent MacNeil
|
Senator Carstairs' Office
|
ON
|
613-949-7123
|
Mr. Michael Martin
|
Senior Policy Analyst, National Aboriginal Health
Organization
|
ON
|
613-237-9462
|
Ms. Debbie Mayer
|
Registered Nurse, Mohawk Council of Akwesane Home Care
Programs
|
ON
|
613-575-2341
|
Rev. Dr. Don Mayne
|
Chair, North American Interfaith Network
|
AB
|
780-466-2757
|
Ms. Ann McKim
|
Project Manager, Rural Palliative Home Care Project
|
NS
|
902-893-5554, x2149
|
Ms. Lorena McManus
|
Program Director, Palliative Care Sub Program, Winnipeg
Regional Health Authority
|
MB
|
204-237-2371
|
Ms. Lynne Mitchell-Pedersen
|
Facilitator
|
MB
|
204-786-5502
|
Dr. R. Sue Morrison
|
Manager, Palliative and End-of-Life Care Unit, Health
Canada
|
ON
|
613-946-9851
|
Rev. Gary Myatt
|
Staff Chaplain, Queen Elizabeth II Health Sciences Centre
|
NS
|
902-473-2400
|
Mr. Cyril Nair
|
Chief, Health and Outcome Statistics, Statistics Canada
|
ON
|
613-951-8387
|
Dr. Murray Nixon
|
Provincial Medical Advisor, Continuing Care Branch,
Department of Health, Province of Nova Scotia
|
NS
|
902-424-3726
|
Ms. Marlene Nosé
|
Senior Policy Analyst, Health Programs Support, Health
Canada
|
ON
|
613-954-6848
|
Ms. Laurie Ann O'Brien
|
Manager, Palliative Care Consultative Services/ President,
Newfoundland & Labrador Palliative Care
Association, Health Care Corporation of St. John's
|
NF
|
709-777-5742
|
Ms. Dale Orychock
|
Director, Palliative Care, Cape Breton District Health
Authority
|
NS
|
902-567-7870
|
Ms. Barbara Ouellet
|
Director, Health Services Division, Health Canada
|
ON
|
613-954-1930
|
Ms. Deborah Palumbo
|
Senator Carstairs' Office
|
ON
|
613-949-7123
|
Ms. Edna Parrott
|
President, Saskatchewan Palliative Care Association
|
SK
|
306-542-3386
|
Ms. Anne Patenaude
|
Policy Analyst, Office of Rural Health, Health Canada
|
ON
|
613-946-2615
|
Mr. Jose Pereira
|
Alberta Cancer Foundation Professorship in Palliative
Medicine, University of Calgary
|
AB
|
403-670-2307
|
Ms. Marian Perrett
|
Facilitator
|
MB
|
204-837-4718
|
Dr. Rhéa Plouffe
|
Manager of Pastoral Care & Counseling Dept., Cross
Cancer Institute
|
AB
|
780-432-8545
|
Ms. Pat Porterfield
|
Clinical Nurse Specialist, Palliative Care, Vancouver
Hospital & Health Science Centre
|
BC
|
604-875-4715
|
Ms. Simone Powell
|
Research Analyst, Knowledge Development Section, Health
Canada
|
ON
|
613-952-7605
|
Dr. Daryl Pullman
|
Associate Professor of Medical Ethics, Memorial University
of Newfoundland
|
NF
|
709-777-6220
|
Ms. Joanne Purvis
|
Facilitator
|
MB
|
204-477-6890
|
Ms. Della Roberts
|
Hospice Palliative Care Coordinator, Delta Hospital, South
Fraser Health Region, Fraser Health Authority
|
BC
|
604-946-1121
|
Dr. Paddy Rodney
|
Assistant Professor, University of Victoria School of
Nursing/ Research Associate, Providence Health Care Ethics
Services
|
BC
|
604-323-5923
|
Ms. Corinne Rowswell
|
Palliative Care Coordinator, East Prince Health
|
PEI
|
902-888-8038
|
Ms. Patricia Russell
|
Senior Policy Analyst, Palliative and End-of-Life Care
Unit, Health Canada
|
ON
|
613-941-9309
<
/TD>
|
Mr. Ken Saddleback
|
Cultural Advisor, Kiwetahk Cultural Society
|
AB
|
780-585-3793
|
Ms. Vivian Sandberg
|
Regional Health Systems Analyst, Health Canada
|
MB
|
204-984-0548
|
Ms. Sheila Scaravelli
|
Vice President, Patient Services, Pictou County District
Health Authority
|
NS
|
902-752-8311
|
Dr. Brent Schacter
|
President & CEO, Cancer Care Manitoba
|
MB
|
204-787-2241
|
Ms. Kendra Shaw
|
Policy Analyst, Employment Insurance Analysis, Human
Resources and Development Canada
|
QC
|
819-997-5675
|
Mr. Russ Simmons
|
Facilitator
|
MB
|
204-885-3740
|
Dr. Trevor Smith
|
Assistant Professor, Health Studies & Gerontology
University of Waterloo
|
ON
|
519-888-4567, x5879
|
Dr. Kelli Stajduhar
|
CIHR/ MSFHR Post Doctoral Fellow, Centre on
Aging, University of Victoria/ Research Associate,
Vancouver
Island Health Region
|
BC
|
250-721-7487
|
M. Jean-François
|
St-Denis Deputy Director, Programs Branch, Canadian
Institutes of Health Research ON 613-954-7224 Ms.
Anita Stern Graduate Student, McMaster University
|
ON
|
905-525-9140, x22293
|
Ms. Ann Syme
|
Leader, Pain and Symptom Management, BC Cancer Agency
|
BC
|
250-519-5608
|
Ms. Carolyn Tayler
|
Director, Palliative Care, Simon Fraser Health Area
|
BC
|
604-517-8644
|
Dr. Mary Van Soeren
|
Acute Care Nurse Practitioner, Consultant
|
ON
|
519-780-0447
|
Ms. Roberte Vautier
|
Health Care Consultant, Extra Mural Program, Department of
Health and Wellness
|
NB
|
506-457-6927
|
Ms. Wendy Wainwright
|
President, BC Hospice Palliative Care Association/
Manager, Counselling Services, Victoria Hospice
|
BC
|
250-370-8715
|
Ms. Gail Watson
|
Facilitator
|
MB
|
204-889-9024
|
Ms. Heather Watson
|
Special Assistant to Minister McLellan, Health Canada
|
ON
|
613-954-1328
|
Dr. Robin Weir
|
Professor, School of Nursing, McMaster University
|
ON
|
905-525-9140
|
Ms. Dona Whalen
|
Social Worker, Nova Scotia Association of Social Workers
|
NS
|
902-473-8691
|
Dr. Keith Wilson
|
Psychologist, The Rehabilitation Centre
|
ON
|
613-737-7350, x5608
|
Dr. Cornelius Woelk
|
Medical Director of Palliative Care, Rural Health
Authority -Central Manitoba
|
MB
|
204-325-4312
|
Ms. Roberta Wraith
|
Manager - Health, Metis Nation of Ontario
|
ON
|
416-977-9881
|
Ms. Lynn Yetman
|
Coordinator, Volunteer Services / Palliative Care,
Colchester East Hants Health Authority
|
NS
|
902-893-4321
|
Footnotes
1 See Appendix 2 for a chronology of events leading up to
the workshop.
2 For the purposes of this workshop, 'healthcare provider'
was defined in the broadest sense possible.
3 The Working Group accepted the above statement in
principle. For the purposes of this Workshop, the group
wanted to focus on the need for a strategy.
4 Participants in this Working Group noted concerns around
definitions of palliative and end-of-life care, i. e., the
terminology must mean more than cancer care.
5 Barbara Gray. Collaborating: Finding Common Ground for
Multiparty Problems. Jossey-Bass Publishers, London,
1989.
|