MAKING A DIFFERENCE IN PALLIATIVE CARE - Covenant Health
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MAKING A
DIFFERENCE IN
PALLIATIVE CARE
HIGHLIGHTS OF THE COVENANT HEALTH
PALLIATIVE INSTITUTE
2012-2017
The Palliative Institute is committed to alleviating suffering for
patients and their families by supporting excellence in palliative
and end-of-life care.
ETHICS CENTRE SUMMARY REPORT | 1
MESSAGE FROM
KAREN MACMILLAN
Senior Operating Officer, Acute Services,
Grey Nuns Community Hospital & Executive Lead, Palliative Care
Covenant Health, Alberta, Canada
I am pleased to present to you, the highlights of our work by the Covenant Health
Palliative Institute. Since the Institute’s launch in October 2012 we have made significant
progress in achieving our goals. We will continue our work on improving and advocating
for palliative and end-of-life care, a high priority for Covenant Health. Covenant Health is
a key partner in Alberta’s integrated healthcare system and it is Covenant Health’s mission
to care for vulnerable populations. With more people living longer with life-threatening
illnesses, there is a great need for better palliative care.
Over the last five years and before the Institute was formed, our researchers and clinicians
have made steps forward in pain assessment, pain classification, clinical care pathways,
and advance care planning. Furthermore, the Institute hosts an annual gathering of the
palliative care community to review research and educate practitioners, and has facilitated
and held major conferences that focused nationally and internationally on palliative care
research and advocacy, and advance care planning research and education.
Some of the factors that have contributed to our success have been our strong links
to our partners and our ability to pilot projects and see results in the Covenant Health
environment. We have acquired a deep network, academic expertise, and esteem for
our work on an international level, and we have the capacity to build on the work that is
currently being done. We invite you to contact us to discuss the work we have already
completed and work that we may undertake on your behalf or in collaboration with you.
For contact information please see the outside back cover of this report.
Sincerely,
Karen Macmillan
MESSAGE FROM KAREN MACMILLAN | 2
OUR NETWORK:
ABOUT THE SUPPORTERS,
PALLIATIVE INSTITUTE PARTNERS,
COLLABORATORS
The Institute supports the Covenant Health strategic objective “We will
be leaders in robust palliative and end-of-life care and advocate for it as & CLIENTS
an essential part of the health system.”
Covenant Foundation
Our Five Pillars
Covenant Health Palliative Care Services
The Institute focuses on supporting excellence in palliative care through clinical University of Alberta
support, education, research, policy, and community engagement.
University of Calgary
Our Current Goals Provincial Palliative and End-of-Life Care
Steering Committee (Alberta, Canada)
1 Increase palliative care capacity to address gaps in service
Alberta Hospice Palliative Care
within Canada
Association
Supporting clinical tools, development and implementation of care
Alberta Health
pathways, knowledge translation, and public awareness
Alberta Health Services
2 Increase the use of Advance Care Planning (ACP) and Goals of
Alberta Innovates – Health Solutions
Care Designation (GCD)
(AIHS)
Partnering with ACP CRIO (Collaborative Research & Innovation Collaborative Research and Innovation
Opportunities Program) in identification of barriers, facilitators and Opportunities (CRIO) program
performance indicators, supporting change management projects, and
Partnerships for Research and Innovation
developing tools for the legal community. The Institute supports policy
in the Health System (PRIHS) program
and education for ACP.
Palliative Care Matters Initiative (Canada):
3 Advocate for a national robust palliative and end-of-life care system
13 national health organizations, 9 experts
The Palliative Care Matters Initiative, hosted by Covenant Health and Catholic Health Alliance of Canada
collaborative national partners, continues to advocate and support quality
Canadian Hospice Palliative
palliative care for all Canadians. The Institute, with its collaborators, is
Care Association
working to translate research into practice by publishing and undertaking
various knowledge translation approaches. Canadian Virtual Hospice
ABOUT THE PALLIATIVE INSTITUTE | 3
CLINICAL TOOLS
End-of-Life (Last Hours to The Edmonton Symptom Family Caregiver Satisfaction
Days) Care Pathway Assessment System - Revised
In response to Accreditation Canada’s
In response to criticisms of the 1997 The Edmonton Symptom Assessment recommendation, the Edmonton zone
Liverpool Care Pathway and in order to System - Revised (ESAS-r) is an palliative care program and provincial
improve on a 2011 Albertan version of internationally recognized nine-item Covenant Health palliative care has
a pathway, the Palliative Institute, and self-report symptom intensity tool adopted the FAMCARE-2 tool as a
Edmonton Zone Continuing Care revised developed for palliative care patients, measure of family caregiver satisfaction
and re-released the Palliative Care with the option of adding a 10th with palliative care services. A process
Pathway as the Care of the Imminently patient-specific symptom. Three studies evaluation study of the FAMCARE-2
Dying Pathway. The 2017 Care of the that gathered validation evidence of was conducted in Edmonton hospices
Imminently Dying Pathway will be the the ESAS were completed, which and the Grey Nuns Community
provincial framework for supporting care resulted in a revised version: the ESAS-r. Hospital Tertiary Palliative Care Unit.
in all patients’ last hours to days of life. A French translation study of the It was also piloted at the St Michael’s
ESAS-r, including patients’ perspectives, palliative unit in Lethbridge to test the
The pathway is a set of tools that
has recently been published. Future appropriateness of the tool in obtaining
enhances the quality of care and
research directions include examining family satisfaction feedback. The tool
provides comfort for a person in their
the role of the ESAS-r in the symptom is now utilized by all Edmonton and
last few hours or days of life. It provides
assessment of psychosocial and spiritual Covenant Health palliative units in
guidance for any member of the health
distress screening including aging, Alberta, with regular reporting and
care team in any care setting and
cognitively impaired, and non-cancer posting of family caregiver comments
offers a coordinated approach to care
palliative care patients. for the staff.
and communication. It can improve
outcomes, promote safety, increase
satisfaction with care, and optimize the Edmonton Classification System Paying Attention to Patient
use of resources. for Cancer Pain (ECS-CP) Dignity
A classification system for cancer pain The maintenance of dignity is an
Renal End-Stage Pathway identifies patients who may require more inherent component of the palliative
Conservative Kidney Management (CKM) complex management. This system care philosophy, frameworks, and
allows for improved assessment and clinical care. The Patient Dignity
is a treatment option for managing
management and facilitates appropriate Question (PDQ) is a novel, brief
advanced chronic kidney disease. This
comparisons of clinical and research approach for obtaining information
clinical care pathway is a resource for
experience. The classification system about personhood. Patients and their
patients and healthcare professionals
was created in Edmonton with multiple families are asked to respond to the
that focuses on quality of life, symptom
collaborators. A series of validation question: “What should your health
management, and living well without
studies have been conducted in care providers know about you (your
dialysis. The online pathway is publicly
Edmonton and international sites. family member) as a person to give
available to patients, families, and health
Findings from this program of research you (them) the best care possible?”
professionals at www.CKMcare.com.
have been presented and published The primary objective of this pilot
As a Collaborative Member of the internationally. Work is underway on study was to prospectively evaluate
Kidney Supportive Care Research translations into French, Spanish, the quality of using the PDQ on the
Group, the Palliative Institute has and Catalan. Tertiary Palliative Care Unit (TPCU) at
supported the development of this the Grey Nuns Community Hospital
pathway. The pathway is currently and two acute care hospitals as part of
moving from research to implementation an ongoing Division of Palliative Care
in collaboration with Alberta’s Kidney Medicine Residency project.
Strategic Clinical Network.
CLINICAL TOOLS | 4
CONFERENCES & OTHER ACTIVITIES
The Palliative Institute has hosted The seminar lead and organized by the completed in collaboration with the
and continues to host conferences in Palliative Institute in cooperation with Catholic Health Alliance of Canada.
the local, national and international the European Palliative Care Research
spheres in order to share and further Centre and EAPC Research Network. Knowledge Translation
the knowledge and practice of Researchers shared their experiences of Activities
palliative care: conducting collaborative research within
Canada and in both North America The Palliative Institute utilizes a variety
Annual Palliative Education & and Europe. The conference provided of methods to support turning
Research Days Conference great opportunities to connect, share research into clinical practice.
experiences, and discuss approaches Infographics, on-line learning modules,
This conference held in Edmonton, to palliative care research. world cafés, and change management
Alberta has become well known as a are some of the techniques beyond
centre of excellence to discuss and Environmental Scan of publishing that encourages utilizing best
further the practice of palliative care. Canadian Catholic Palliative practice. The Institute commonly uses
It has been held for 28 years and brings Care Services and Innovations Canadian Institutes for Health Research’s
together people interested in palliative Knowledge to Action approach to
care to network, educate health The environmental scan describes the improving best practice.
professionals and share research. scope of palliative care service delivery
and innovation in Canadian Catholic
European Association healthcare. Catholic facilities identified
for Palliative Care 22 palliative care innovations. Catholic
Research Network healthcare organizations completed
a self-assessment on their readiness
This international seminar was held to promote change. The project was See also ACPEL on pg.6
in December 2016 in Banff, Alberta. and Palliative Care Matters on pg.7
ETHICS CENTRE SUMMARY REPORT | 5
ADVANCE CARE PLANNING (ACP) & GOALS
OF CARE DESIGNATION (GCD): KEY PROJECTS
International Society of
Advance Care Planning &
End-of-Life Care Conference
The Palliative Institute hosted the
6th International Society of Advance
Care Planning and End-of-Life Care
conference (ACPEL 2017) in Banff,
Alberta with the support of the
Covenant Foundation and other
sponsors. 200 people from 16 countries
attended. More than 220 research
abstracts provided the international
scientific committee with ample material
to devise a strong conference program
that included poster walks and awards.
Part of the conference outreach included
a national webinar presented by a lay
person and physician. Delegates at
the conference said that seeing the
The Palliative Institute has undertaken practice of ACP. Both ACP and GCD webinar and being able to interact
projects to increase the use of Advance have been shown to lead medical care with ACP leaders was very helpful in
Care Planning (ACP) and Goals of Care according to patients’ desires when they understanding where ACP is
Designation (GCD) in partnership with cannot speak for themselves. This utilizes at internationally.
the Advance Care Planning Collaborative healthcare resources in an effective way.
Research and Innovation Opportunities ACP in lawyers’ practice
(ACP CRIO) research program: Barriers and facilitators to
the implementation of ACP In collaboration with the Canadian Bar
Integrating performance & GCD – application of Association, Legal Education Society
indicators in Alberta for learnings in two change of Alberta and Office of the Public
putting ACP & GCD management projects: Guardian/Trustee and ACP CRIO, the
into practice vascular surgery & fractured Palliative Institute undertook a research
hip surgical populations study to assess barriers and facilitators
The Palliative Institute chaired a to the lawyers’ role in ACP. Through
collaborative study to identify ACP The Palliative Institute is co-leading ACP numerous focus groups and a survey of
best practice indicators and distributed & GCD change management projects in 133 Alberta lawyers who practice in Wills
a report to provincial stakeholders the fractured hip and vascular surgical and Estates, Elder and Health Law, the
last year. Currently, the province is populations at two Covenant Health study identified critical gaps in lawyers’
auditing the use of many indicators hospitals. For each project, a team of key knowledge of health care practices and
for implementation into the provincial health care provider and administrative documents, and means of equipping
ACP dashboard. A series of reports and stakeholders, educators, process lawyers and clients with ACP tools while
academic articles will be published and improvement specialists and researchers fostering conversations between lawyers
presented nationally. have reviewed barriers and facilitators and physicians.
(at the patient, health care provider and
Performance indicators provide system levels) and developed a plan
information about progress and to implement ACP & GCD into regular
shortcomings in the adoption and surgical practice.
ADVANCE CARE PLANNING (ACP) & GOALS OF CARE DESIGNATION (GCD): KEY PROJECTS | 6
PALLIATIVE CARE MATTERS:
BUILDING CONSENSUS TOGETHER
The Palliative Care Matters (PCM)
initiative is intended to develop a
consensus of Canadians on the
Ensuring that the suffering of our fellow
future of palliative care and catalyze citizens is alleviated is at the heart of a civil
change in healthcare policy and society…. It isn’t enough to care; Canada
practice. The Palliative Institute
initiated, and hosted Palliative Care must turn its caring into commitment that
Matters (PCM) in collaboration with ensures palliative care is a part of the
13 national organizations.
Canadian health system and receives the
PCM included an Ipsos survey of 1540
attention and resources it needs.
Canadians in the summer of 2016, a
consensus development conference in Consensus Statement of the Lay Panel,
Ottawa in November 2016 (touching 1.2
Palliative Care Matters Conference, November, 2016
million Canadians), and a Conference
Board of Canada report released in June
2017 (providing recommendations for Following the conference, The Conference Board of Canada reviewed the consensus
action and implementation). statement and the work to date. The report, “Palliative Care Matters: Fostering Change
At the conference, a lay panel in Canadian Health Care,” provided the following insights on how to move forward
of Canadians considered the Ipsos implementing the recommendations:
public opinion research, heard the
• Acknowledge Patients and the Public as Experts in their own care.
presentations, and questioned experts
on how quality palliative care could • Develop a Better Understanding of the Landscape - Palliative and end-of-life
be delivered. The lay panel made
care is evolving. More people are dying outside of hospital settings than in the past,
20 specific recommendations
and this has implications for care provided in homes, communities, and long-term
addressing national frameworks,
care settings.
palliative home care, integration
of care, education and training, • Move from Organic to Strategic to Implementation - Access to quality care
indicators, and public awareness. is uneven within and across jurisdictions, with some populations significantly
underserved. Strategic frameworks and plans can be effective in addressing
Phase 1: Talk quality and access.
Listening to Canadians
• Recognize that Workforce Planning Is Essential - The future demand for palliative
From spring 2016 to fall 2016, we gathered
information from Canadians about what they know, and end-of-life care services means governments and other stakeholders must
how they feel, and what they expect. develop workforce capacity.
Phase 2: Understand
• Foster Current Opportunities in Home and Community Carel - Canada needs
Reaching Consensus
to immediately develop enhanced palliative and end-of-life capacity in home,
At a conference in Ottawa, November 7-9, 2016,
community, and long-term care settings.
a jury (lay panel) of Canadians heard the evidence
and developed a Canadian consensus around
what needs to happen. Going Forward
Phase 3: Do
The private member’s Bill C-277, “An Act providing for the development of a
Creating Change
framework on palliative care in Canada” was enacted in November, 2017. This bill
The Canadian consensus on palliative care is being
provides further impetus to move forward on an integrated palliative care strategy.
brought forward to policy makers, governments and
the public so we can all act together and make better
PCM is committed to action, organizing a meeting in February 2018, and utilizing the
palliative care a reality. collaborative impact framework to bring palliative care leaders together in developing
a national action plan. The Palliative Institute continues to chair and support PCM.
PALLIATIVE CARE MATTERS: BUILDING CONSENSUS TOGETHER | 7
As a society, we need to place as much
emphasis on this critical part of the life journey
as we do on bringing life into the world.
Don Newman, Chair of the Lay Panel
Palliative Care Matters
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RESEARCH & ACADEMIC PUBLICATIONS | 11Carleen Brenneis, Director 416 St. Marguerite Health Services Centre
Konrad Fassbender, Scientific Director 1090 Youville Drive West
Covenant Health Palliative Institute Edmonton Alberta T6L 0A3
Tel: (780) 735-9637 | palliative.institute@covenanthealth.ca | covenanthealth.ca/innovations/palliative-institute
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