Title: Integration of End of Life Care: A Health Canada Synthesis Research Project
Investigator Name: Donna Wilson, Ph.D.
Project Completion Date: March 2004
Research Category: Synthesis
Institution: University of Alberta
Project Number: 6795-15-2002/4780004
Help on accessing alternative formats, such as PDF, MP3 and WAV files, can be obtained in the alternate format help section.
 (138K)
Summary
Introduction
Most of the 220,000 Canadians who die each year now, principally
of old age and progressive ill health, do not have access to integrated
end-of-life (EOL) services.
Although growing in number, hospice and palliative care programs
are unevenly distributed across Canada, most are small with regard
to service capacity, and the services provided differs from one
program to another. Many dying Canadians are thus in the difficulty
position of having to actively seek the health and social services
that could ease their passage through the final days or weeks of
life, while most are at risk of uncoordinated and therefore potentially
inadequate EOL care.
Among all vulnerable persons, dying persons are arguably the most
vulnerable. The dying process is often difficult, as a result of
emotional and physical challenges. All too often, given the uncoordinated
state of EOL health and
social services in Canada, dying persons must rely on family and
friends to support them through the EOL process.
Although the loving support of family and friends when available
is irreplaceable, EOL care
is an important public obligation.
Overview of Synthesis Research Project
The aim of this October 2002 through September 2003 synthesis
research project was to identify EOL care
delivery models or approaches that would best foster integrated EOL care
in Canada. Four objectives guided this research:
1. To determine how developments toward increased health system
integration and/or regionalization have affected the delivery of
health care services to persons with terminal illnesses.
2. To evaluate the impacts and outcomes of integrated EOL programs
compared to traditional EOL care for
terminally-ill individuals, their families, health care providers, and health
care administrators.
3. To identify and describe best practice models or approaches from the point
of view of the infrastructure or components needed to support effective integrated
health systems that ensure quality EOL care
for terminally-ill persons and their families.
4. To identify the policy implications for federal, provincial, territorial,
regional, and municipal governments in Canada of a shift toward the provision
of EOL care in the context of integrated
health care/delivery systems.
Research Methods
An interdisciplinary international team undertook four interrelated
research activities.
1. An extensive literature search and review. In total, 27 literature
reviews were written.
- Canadian End-of-life Care Programs, Models, and Approaches
- International End-of-life Care Delivery Models or Approaches
- The Needs of Dying Persons
- The Needs of the Families of Dying Persons
- Pediatric End-of-life Care
- Gender Differences in the Experience of the Dying Process
- Culture and End-of-life Care
- Aboriginal End-of-life Care
- End-of-life Spiritual and Psychosocial Issues
- Bereavement
- Managing End-of-life Pain and Other Symptoms Through Non- Pharmacological
Means
- End-of-life Prognostication
- Literature Reviews That Have Focused on End-of-life Care
- End-of-life Topics Addressed In Randomized Controlled Clinical Trials Research
- Continuity of End-of-life Care
- End-of-life Case Management
- The Home as a Place of End-of-life Care
- End-of-life Care in Acute Care Hospitals
- End-of-life Care in Intensive Care Units
- End-of-life Care in Residential Continuing-Care Facilities
- End-of-life Care in Rural or Remote Areas
- Palliative Day Care
- End-of-life Respite Care
- Volunteers Involved in End-of-life Care
- Outcomes and Evaluation of End-of-life Care
- Education in Canada for End-of-life Care
- New Developments in End-of-life Care
2. The creation of three web-based questionnaires to gather current EOL needs
and issues information from persons near the end of life, their families and
friends, and EOL health care providers
and care planners.
3. The analysis of a complete set of provincial home care data, data that reflect
home care client and service trends over a 10-year period
(April 1, 1991 - March 31, 2001) in Alberta.
4. Site visits to gather information about EOL care
programs. Site visits were made to a broad selection of programs in five countries
or global regions: New Zealand, Australia, United Kingdom and Republic of Ireland,
United States, and Canada.
Key Components of a Canadian Best Practice Integrated End-of-life
Care Model or Approach
A considerable number of EOL care
delivery models and approaches exist, both in Canada and other
countries. For many reasons, the research team rejected all models
or approaches that involve for-profit EOL care,
and private pay or private insurance methods of payment for EOL care.
Instead of identifying a single model or approach as superior above
all, the research team identified key components within the various
models and approaches that are essential for fostering a best practice
integrated EOL care model
or approach in Canada. There are four such components:
1. Universality
2. Care Coordinator
3. A Broad Range of Basic and Advanced End-of-life Services, and
4. An Assurance of End-of-life Services Regardless of Care Setting.
Universality
A broad range of health care and social support services need
to be available to all persons who are near the end of life (EOL)
and their significant family members or friends.
Definitions
"Persons who are near the end of life" are individuals experiencing a decline in health that could reasonably be expected to lead to death within the next12 months.
"Significant family members or friends" are those persons who are actively involved in planning or providing support to persons who are near the end of life.
Justification
Much public and professional concern has existed for many years
in Canada over EOL care.
This concern has led to the ad hoc creation and growth of palliative
care programs, hospices, and EOL services
across Canada. The result of this necessary but largely grass roots
and voluntary effort is an uneven distribution of EOL programs
across Canada, considerable differences in the EOL services
that are available to Canadians who are near the end of life and
their significant family members or friends, unmet care needs,
and largely uncoordinated EOL care
services. Furthermore, public funding for EOL care
varies considerably across Canada and also within provinces/territories,
with most EOL programs today
relying heavily on private or charitable donations to address their
capital and operating costs.
Although death and dying may be intensely personal matters, EOL care
is an important public obligation.
Given the value that Canadians place on universal health and social
programs, EOL services for
persons who are near the end of life and their significant family
members or friends should not be limited by personal financial
resources or geographic location within Canada; nor should EOL services
be limited on the basis of age, gender, the condition that will
lead to death, the presence or absence of social resources such
as significant family members or friends and the ability to speak
one or both official languages of Canada, and any other relevant
factors - such as time of day or day of week.
Policy Implications
Given the current state of EOL care
in Canada, and projected as well as growing difficulties in the
absence of collective and concerted policy leadership on EOL care,
the development of a pan-Canadian End-of-life Care Network to
further EOL care and program
developments, including clear working practice guidelines and organizational
components, such as mandatory accreditation, is needed as soon
as possible in Canada to ensure a broad range of health care and
social support services are available to all persons near the end
of life and their significant family members or friends.
This initiative will require the following:
A. Intersectoral planning to ensure EOL care
is a priority for federal, provincial, and territorial governments
across Canada.
B. Intersectoral planning to ensure a common set of publicly-funded EOL services
are available across Canada for all persons near the end of life, and their
significant family members or friends.
C. Intersectoral planning to identify end-of-life (EOL)
care delivery models or approaches that would best foster integrated EOL care
in Canada. Full-service programs offer all health and social services that
may be needed by persons near the end of life and their significant family
members or friends, with service provision thus integrated within one program.
Limited-service EOL programs offer some
of the health and social services that are needed by persons near the end of
life and their significant family members or friends, and employ a Care Coordinator
to ensure EOL service integration.
D. Intersectoral planning to secure sustained federal government funding for
accredited EOL programs or program components,
and ensure ongoing provincial/territorial and/or regional fiscal support of
accredited EOL programs or program components.
E. Targeted federal research funding to strengthen EOL services
and EOL programming, including research
in the areas of: voluntary sector versus public sector provision of EOL care
services, the value of alternative therapies for persons near the end of life,
the amount and types of formal home care needed to prevent informal caregiver
burnout, the amount and types of health and social services needed to support
home deaths when these are desired, the amount and types of health and social
services needed by the frail elderly who live in private residences, the amount
and types of additional health and social services needed by persons living
in residential continuing-care facilities who are near the end of life, EOL staffing
trends and issues, and outcome measures for EOL care.
F. Intersectoral planning to further existing and additional EOL initiatives,
while supporting the growth and development of Canada's national EOL association
- the Canadian Hospice Palliative Care Association.
G. Intersectoral planning for the development and maintenance of a toll-free EOL telephone
service and/or website for the provision of information on EOL services
and accredited EOL programs to persons
near the end of life, their significant family or friends, and others such
as EOL care providers. This information
service should be a key resource to ease access to EOL services
for persons near the end of life and their significant family members or friends,
and a major EOL information source for
health care providers and planners.
H. Intersectoral planning for public service advertising to further public
knowledge and acceptance of the toll-free telephone and/or website service,
and End-of-life Care Network.
Care Coordinator
EOL services for persons
who are near the end of life and their significant family members
or friends should be arranged through an EOL Care
Coordinator - an individual with specialized EOL knowledge
and skills, such as a palliative care nurse, a nurse practitioner,
a palliative care physician, a community-based home care or public
health nurse, social worker, hospital-based case manager, or another
salaried individual who can: (a) assess EOL needs
and required EOL services,
(b) plan and prescribe needed EOL services,
(c) evaluate EOL services
and care outcomes, (d) work within a team or through a team concept
where the person who is near the end of life and their significant
family members or friends are the first and most significant team
members, and (e) be accessible and accountable at all times personally
or through a pre-arranged designate to each person who is near
the end of life and their significant family members or friends.
Justification
Most, if not all, EOL care
programs in Canada and those visited outside Canada employ a Care
Coordinator in a salaried position, almost always a Registered
Nurse with advanced EOL care
skills and knowledge. This person performs the intake assessment
and develops the initial care plan in conjunction with the person
near the end of life and their significant family members or friends.
This Care Coordinator then maintains a relationship with the person
who is near the end of life and their significant family members
or friends. The Care Coordinator also provides ongoing specialized EOL care
services, such as symptom assessment and management. Service integration
and care coordination are common outcomes of having a distinct
person made responsible and accountable for fulfilling this role.
Persons near the end of life and their significant family members
or friends benefit by having an enduring contact point through
which EOL care can be arranged.
A major issue, however, with regard to Registered Nurse and other
non-medical Care Coordinators is their lack of legislated and/or
organizationally-approved ability to prescribe common EOL medications
and services, including the admission and discharge of persons
near the end of life from health care facilities. This issue has
at least four serious implications:
(a) timely access to needed EOL services
is reduced, (b) some needed EOL services
may never be obtained, (c) fee-for-service family physicians are placed in
the position of having to take on the time-consuming and difficult role of
the Care Coordinator, and (d) palliative care physician specialists are not
used as efficiently or effectively as they could be if they worked in partnership
with a skilled EOL Care Coordinator
who can assess and manage the majority of EOL concerns,
and recognize when specialist palliative care physician services are required.
Timely care is critical to the identification of potential or
existing problems, the prevention of problems, and the early and
successful resolution of problems. Furthermore, timely communication
is one of the most fundamental necessities for integrated, high
quality EOL care. A single EOL Care
Coordinator, as opposed to a mesh of care providers, is one of
the most critical factors for ensuring the communication that is
needed by persons near the end of life, their significant family
members or friends, and their health care providers.
Although some comprehensive EOL care
programs exist in various parts of Canada and offer integrated EOL care,
with these programs often located within geographically-defined
areas, EOL care is more
often provided as a distinct entity within a distinct care setting,
such as an acute care hospital, nursing home, or private residence.
Integrated EOL care is much
more likely to be ensured, in the presence or absence of comprehensive EOL care
programs, when a single individual with EOL specialist
knowledge and skills is responsible for assisting the person near
the end of life and their significant family members or friends.
Policy Implications
A. Intersectoral planning is needed to ensure nurse practitioners
and other non-medical health care professionals with recognized EOL specialization
credentials can work to their full capacity within an expanded
scope of practice; a scope of practice that includes prescribing
from within a standard EOL medication
formulary (list) and prescribing other commonly needed services
for persons near the end of life and their significant family members
or friends, including admitting and discharging persons near the
end of life from acute care hospitals and other health care settings,
such as residential continuing-care facilities or freestanding
hospices that provide inpatient, respite, or day program EOL care.
B. Intersectoral planning is needed to ensure EOL programs
employ Care Coordinators on a salary, as opposed to fee-for-service, basis.
A Broad Range of Basic and Advanced End-of-life Services
A broad range of health and social services are needed by persons
near the end of life, and their significant family or friends,
including the health and social support services that are currently
available in Canada and additional EOL services.
Additional EOL services
are both basic and advanced health care and social support services
designed to meet the unique needs of persons near the end of life,
and the unique needs of their significant family members or friends.
Definitions
Basic EOL services are
those services that are provided by persons who do not specialize
in EOL care. Basic EOL services
are needed by most persons who are near the end of life, and their
significant family members or friends. Basic EOL services
are also needed throughout most EOL processes.
Advanced EOL services are
those services that are provided by persons who specialize in EOL care.
Advanced EOL services are
normally only needed by a small proportion of persons near the
end of life and their significant family members or friends. Advanced EOL services
are also normally needed during only a proportion of most EOL processes.
The basic and advanced EOL services
that need to be readily available and publicly funded are:
A. EOL care coordination
through a person with EOL specialization,
with this care coordination following a request for EOL care
from a person near the end of life, a significant family member
or friend, or a health care provider.
B. Sufficient formal home care, equipment, and medication to enable home-based EOL care,
in cases where this is the current living arrangement for the person near the
end of life and/or the desired place for EOL care.
C. Sufficient support, including financial and/or employment-related support,
to enable a significant family member or friend to provide home-based EOL care,
in cases where a private residence is the current living arrangement for a
person near the end of life and/or the desired place for EOL care,
and this family member or friend is willing to act as a home-based EOL caregiver.
A home-based EOL caregiver provides
needed physical and emotional care to a family member or friend in a private
residence.
D. Respite care in designated residential continuing-care facilities, freestanding
hospices, acute care hospital units, or other care settings for periods of
1 to 7 days and/or nights. Respite care should be available on both a planned
and unplanned or emergency basis.
E. Day support programs, designed as half day or day-long programs that involve
access to a comprehensive range of social and health care services within a
communal setting; such as public health offices, community centres, palliative
care units or hospice wings within acute care hospitals, residential continuing
care facilities, and/or freestanding hospices.
F. Spiritual and psychosocial support for the person who is near the end of
life, their significant family members or friends, and their care providers.
G. Bereavement support for significant family members or friends, and their
care providers.
H. Rapid assessment and treatment of pain and other symptoms in acute care
hospitals, residential continuing-care facilities, or hospices; settings that
are also prepared to provide end-stage comfort-oriented inpatient EOL care
when the person near the end of life is determined to be experiencing the last
hours of life.
I. On-call EOL specialists, for emergency
consultation, and to assist EOL care
planning and provision. This will require the development of tele/video conferencing
for consultation with remote areas.
J. EOL care and EOL program
information via a 24 hour, 7 days a week, toll-free telephone line, and/or
website.
K. Other supports in keeping with each unique dying person's culture, gender,
age, illness, health beliefs, personal interests and values, and other important EOL care
factors. This may include alternative therapies for promoting comfort, such
as massage or aromatherapy.
Justification
The needs of persons who are near the end of life vary greatly,
with these needs ranging from minimal (as in the case of a sudden
and unexpected death, or the case when a decline in health is accompanied
by few symptoms or symptoms that can be addressed rapidly or without
difficulty by non-specialists) to extensive (as in the case of
severely distressing symptoms and multiple or extreme needs that
require the attention of one or more specialists, or specialist
teams). The needs of persons who are near the end of life may also
vary from day to day, and hour to hour. Five EOL needs,
however, normally must be assessed and addressed: (a) pain and
symptom management, (b) assistance with activities of daily living,
(c) communication, including timely and relevant information, (d)
spiritual needs, and
(e) psychosocial needs.
The needs of significant family members or friends may also vary
greatly, and these needs may similarly vary from day to day and
hour to hour. Six common needs, however, normally need to be assessed
and addressed:
(a) the need for timely and compassionately-delivered information about their
family member or friend's ongoing state of health, (b) the need for emotional
support prior to the death, (c) the need to ensure their family member or friend's
comfort, (d) the need to be satisfied with formal care services and the work
of both professional and non-professional care providers, (e) diverse needs
related to enabling their work as direct or indirect caregivers, and
(f) other needs that arise from their cultural background, living circumstances,
or other unique factors.
All significant family members or friends will be bereaved following
the death, with some individuals severely bereaved. This bereavement
experience needs to be planned for prior to the death, with support
provided both before and following the death. This support should
be provided by a qualified bereavement counselor when this bereavement
is deemed by the EOL Care
Coordinator or others to be difficult or prolonged. Bereavement
services should be based on the knowledge that the level of and
type of pre-death support for significant family members or friends,
as well as their satisfaction with the care of their loved one
prior to death, are critical factors in the bereavement that will
be experienced post death.
Site visits to EOL programs,
and a review of the literature on (unpaid) EOL volunteers,
revealed a significant potential role for volunteers. Volunteers
can fulfill many different functions to support persons near the
end of life and their significant family or friends, and/or support EOL care
programs or services.
Site visits to EOL programs
also revealed the need to recognize as special individuals the
persons who are employed there, as they understand and act to further
the philosophy and work of hospice/palliative care. Staff education
is a form of recognition for EOL program
employees, while educating other staff and the public are important
for advancing EOL care.
Policy Implications
A. Targeted federal funding and other initiatives are required
to ensure an adequate level of EOL care
content in all entry level post-secondary health and social service
educational programs, to ensure all graduates possess the knowledge
and skills needed to provide basic EOL care
to persons near the end of life and their significant family members
or friends, and all graduates are able to determine when advanced EOL care
is required.
B. Targeted federal funding and other initiatives are required for 15 years
(2003- 2018) to increase the number of EOL specialists,
and ensure substantial growth in the number of EOL specialists
within all health and social service disciplines, so as to prepare for a substantial
increase with population aging and population growth in the number of Canadians
near the end of life. Increased educational offerings and increased accessibly
of education are both needed to ensure interested persons are not deterred
from pursuing advanced EOL education.
C. Targeted federal funding and other supports are needed in the form of scholarships,
bursaries, training allowances, and/or loan mechanisms for the individuals
choosing to pursue advanced EOL education.
Advanced EOL education must be affordable,
so as to not deter persons interested in pursuing advanced EOL education.
D. Intersectoral planning is needed to develop a common and successful strategy
for attracting, screening, training, and retaining (unpaid) EOL volunteers.
An Assurance of EOL Services
Regardless of Care Setting
EOL services should not
be limited by care setting. EOL care
must be provided in all settings where a person near the end of
life temporarily or permanently resides.
Justification
For some time now in Canada, the location of EOL care
and death has been one of the most significant issues for persons
near the end of life and their family members or friends. Unfortunately,
minimal EOL home care supports
and informal caregiver burnout have often led to hospital-based EOL care
and death.
In cases where there is a desire for home-based EOL care
by the person near the end of life, and/or their significant family
members or friends, sufficient home care services need to be provided
to enable EOL care and death
in the home. However, if the desire of the person near the end
of life and/or their significant family members or friends is to
avoid death in the home, then an appropriate alternate setting
is needed. Appropriate alternate settings for the final stage of
life are purposely-designated palliative care wards or hospice
wings in acute care hospitals, residential continuing-care facilities,
and/or freestanding hospices. In rural or remote areas, designated
beds within such facilities may also be appropriate alternate settings.
Few freestanding hospices currently exist in Canada. Freestanding
hospices are buildings designed as home-like places for EOL care
planning and provision. In some countries, freestanding hospices
are the centre for an integrated and broad range of EOL health
and social services that are provided within a defined geographic
area. Freestanding hospices normally have few inpatient beds, and
some have no inpatient beds. Most freestanding hospices, as well
as most palliative care and hospice programs provide the bulk of
their services in private residences, as home-based care. Furthermore,
most hospice and palliative care programs aim to make home deaths
possible. Regardless of care setting, palliation is the philosophy
that needs to guide EOL service
planning and provision.
Policy Implications
A. Intersectoral planning is needed to ensure EOL programs
provide EOL services wherever
the person near the end of life temporarily or permanently resides.
In most cases, this will be within private residences.
B. Intersectoral planning is needed to distinguish those acute care hospitals,
residential continuing-care facilities, and hospices that develop the capacity
to provide EOL inpatient, respite, on
call, and/or day program services.
C. Intersectoral planning is needed to secure federal, provincial/territorial,
and/or regional funding for residential continuing-care facilities with designated EOL beds,
hospice wings or palliative care units, and/or advanced EOL services.
D. Intersectoral planning is needed to ensure existing acute care hospital
and residential continuing-care facility capacity is used for EOL care
purposes; with freestanding hospices an option for providing inpatient, respite,
and/or day program services in cases where there is limited capacity for EOL care
in existing acute care hospitals or residential continuing-care facilities.
Research Team Members
Dr. Donna Wilson - Principal Investigator
Professor, Faculty of Nursing
Third Floor Clinical Sciences Building, University of Alberta
Edmonton, AB T6G 2G3
Telephone (780) 492-5574, Fax (780) 492-2551
 donna.wilson@ualberta.ca
Co-Investigators Who Contributed to and Endorse This Report
(in Alphabetical Order)
Dr. Stephen Birch (Hamilton, Ontario, Canada)
Dr. Margaret Brown (Adelaide, South Australia, Australia)
Dr. Lise Fillion (Quebec City, Quebec)
Dr. Christopher Justice (Hamilton, Ontario, Canada)
Dr. Janice Kinch (Calgary, Alberta, Canada)
Ms. Karen Leibovici (Edmonton, Alberta, Canada)
Dr. Margaret MacAdam (Toronto, Ontario, Canada)
Dr. Tom Noseworthy (Calgary, Alberta, Canada)
Dr. Karin Olson (Edmonton, Alberta, Canada)
Ms. Pam Reid (Halifax, Nova Scotia, Canada)
Mr. David Shepherd (Durham, England)
Dr. Sam Sheps (Vancouver, B.C., Canada)
Dr. Roger Thomas (Calgary, Alberta, Canada)
Dr. Corrine Truman (Edmonton, Alberta, Canada)
Acknowledgements
The research team would like to acknowledge the many EOL practitioners,
research assistants, researchers, and Health Canada personnel who
provided information and assistance to this synthesis research
project.
In particular, the research team would like to acknowledge the
contributions of four consultants to this project: Dr. Larry Librach
(Toronto, Ontario), Dr. Julia Addington-Hall (London, England),
Dr. Katherine Froggatt (Sheffield, England) and Dr. Neil MacDonald
(Montreal, Quebec). Many research assistants were also critically
important to this project, including: Selinda Berg, Eryck Silva,
Joe Huang, Selena Wong, and Ashikur Rahman.
The research team would also like to acknowledge the funding support
provided by Health Canada for this synthesis research project (project
#6795-15-2002/4780004). This funding support was received through a competitive
research proposal review process. Health Canada's recognition of the need for
this project is of particular significance, as this recognition signals a major
step toward furthering end-of-life care in Canada.
Disclaimer in Regard to the "Final Report. Integrated End-of-Life Care: A Health Canada Synthesis Research Project"
The interpretation and conclusions contained herein are those
of the Researchers and do not necessarily represent the views of
the Government of Canada nor Health Canada. Neither the Government
of Canada nor Health Canada express an opinion in relation to this
study.
Disclaimer in Regard to the 'Home Care Data Analysis Report'
that is based on Alberta Health and Wellness Data
The home care data analysis was made possible as a result of data
provided by Alberta Health and Wellness. The interpretation and
conclusions contained herein are those of the Researchers and do
not necessarily represent the views of the Government of Alberta.
Neither the Government nor Alberta Health and Wellness express
an opinion in relation to this study.
The views expressed herein do not
necessarily represent the views of Health Canada
In addition to the above summary, the full report can be accessed
in the following ways:
- The print version of the full report can be obtained in the
language of submission from the Health Canada Library through
inter-library loan.
- An electronic version of the report in the language of submission is available upon request from Health Canada by contacting the Research Management and Dissemination Division.
This research has been conducted with a financial contribution
from Health Canada's Health Policy Research Program. For permission
to reproduce all or part of the research report, please contact
the Principal Investigator directly at the following address: donna.wilson@ualberta.ca.
The Health Policy Research Program (HPRP)
funds research that provides an evidence base for Health Canada's
policy decisions. The HPRP is
a strategic and targeted program with a broad socio-economic orientation
and connections to national and international endeavours. The research
can be primary, secondary or synthesis research, a one-time contribution
to a developing research endeavour, or a workshop, seminar or conference.
|
