Toward Kinder Care - Canadian Breast Cancer Foundation

Transcription

Tracing women’s experience of breast cancer
from risk awareness through detection,
diagnosis, treatment and survivorship
By Terry Trussler, EdD
February 2007
Toward Kinder Care: Tracing women’s experience of breast cancer
from risk awareness through detection, diagnosis, treatment and survivorship
By Terry Trussler, EdD
Copyright 2007
ISBN 978-0-9782900-0-9
Design and production by: Pivot Design Group Inc.
Printed by: Advanced Graphics
For additional copies of this report, please contact:
Canadian Breast Cancer Foundation – Ontario Chapter
20 Victoria Street, 6th Floor
Toronto, ON M5C 2N8
Tel: 416-815-1313 x440 Toll-free: 1-866-373-6313 x440
Email: resourcesON@cbcf.org
Downloadable copies of the executive summary, recommendations and complete
report are available online at www.cbcf.org/ontario and at www.upfrontproject.ca.
The Up Front Partnership: working together to make a difference
The Up Front partners gratefully acknowledge the support of the project funders:
Canadian Breast Cancer Foundation - Ontario Chapter
Board of Directors, 2006-2007
Alison J. Youngman, Chair
Jean Blacklock, Vice-Chair
Dr. Shailendra Verma, Vice-Chair
Patricia Smith, Past Chair
Catherine Brayley
Dr. Susan Done
Deborah Dubenofsky
Susan F. Goodman
Carole Mayer
Randi Rahamim
Gary Shiff
Christy Teasdale
Mary Jane Thomson
Lilian Tomovich
Donna Van Alstine
Barry Yontef
Beverly Thomson, Honorary Chair
Up Front: New Perspectives on Breast Cancer
Project Steering Committee
Sharon Wood, Executive Director, Canadian Breast Cancer Foundation - Ontario Chapter
Beth Easton, Director of Allocations and Health Promotion, Canadian Breast Cancer Foundation - Ontario Chapter
Patricia Smith, Board of Directors, Canadian Breast Cancer Foundation - Ontario Chapter
Carolyn Jackson, volunteer, Canadian Breast Cancer Foundation - Ontario Chapter
S. Elaine Brown, Willow Breast Cancer Support Canada
Jackie Manthorne, Canadian Breast Cancer Network
Bill Campbell, Ontario Breast Screening Program, Cancer Care Ontario
Shannon Stuart, Princess Margaret Hospital Foundation
Bette Johnston, Princess Margaret Hospital Foundation Breast Centre Women’s Committee
FOREWORD
The following pages contain rich accounts of experiences of breast cancer care in Ontario from the perspective
of those who know it best: former patients, their personal care providers and health care professionals. While this
information is presented here as a final report reflecting the culmination of three years of research, the report is not
the conclusion of our work, but rather the beginning of a new phase of action. This report provides guiding evidence
for a coordinated effort to ensure that the breast care system can respond effectively to people’s needs across the
entire spectrum of breast cancer care in a way that more fully treats the whole person, not just the disease.
When we began this research initiative three years ago, we looked forward to being able to share its findings
with Ontario’s breast cancer community — to engage people in the process of change required to improve future
experiences of the entire continuum of breast health care. We were deeply moved by the openness and generosity
of the individuals who shared their personal and professional experiences. Most of all, we were motivated by their
desire to make a difference by being part of an initiative that will help others. This report is our promise to honour
their contributions.
Many people whose voices can be heard in this report talked about the need for a system that includes kinder care,
responds to individual patient needs, allows patients to be equal partners in their treatment and care, acknowledges
and accounts for the inequities some women experience in system access and quality of care, and addresses the
unanticipated hidden costs of breast cancer.
During the course of this project, it became clear that governments, policymakers, health care professionals, community
organizations and advocates are beginning to share a vision of the opportunities to improve the current breast cancer
care system, and the priority areas where these changes are most needed. Taking action to create change will require
participation from all of these groups. Our challenge is to work together effectively to build a system of care that
does not contribute to experiences of treatment stress, as revealed in the Up Front research findings, and to realize
an enhanced vision of coordinated care that better supports patients’ needs.
On behalf of the project partnership, the Canadian Breast Cancer Foundation – Ontario Chapter wishes to acknowledge
the individuals and professionals who were willing to speak so candidly about their experiences. Many women who
had experienced breast cancer indicated that their decision to participate in the research was a difficult one, as they
were unsure if they would be able to share their stories. However, they were motivated by the desire to help people
whose lives have been affected by breast cancer and those who will be diagnosed in the future. These stories now
collectively form the evidence to guide strategies for informed changes to the breast cancer care system. We are
honoured to receive the trust that women placed in us, and we are accountable to them to ensure that this research
leads to tangible changes in breast cancer care.
And finally, we would like to acknowledge with deep gratitude some key people without whom this work would not
have been possible. First, the early work of our colleagues in the British Columbia/Yukon Chapter of the Foundation
in a similar area served as an inspiration and catalyst for our own research to be developed. We appreciate their
encouragement and guidance, and the opportunity to learn from their experience as we created our own path. Second,
the Chapter’s Board of Directors gave their commitment and vision to this project, believing from the outset in its
importance and recognizing that, through it, we would learn a tremendous amount as an organization and be better
able to fulfill our mission by transforming recommendations to targeted actions for change. Lastly, we’re indebted
to the remarkable contribution of the Chapter staff team, led by Beth Easton, Director of Allocations and Health
Promotion, who navigated the uncharted territory of this work with dedication, patience, perseverance, compassion,
a sense of humour and a commitment to excellence that has ensured we have arrived where we are today.
Together, we have all changed as a result of this work. We have a renewed sense of purpose and recognize our collective
responsibility to pursue changes that will realize a vision of kinder care, and a future without breast cancer.
Alison J. Youngman
Chair, Board of Directors
Sharon Wood
Executive Director
ACKNOWLEDGEMENTS FROM THE CANADIAN
BREAST CANCER FOUNDATION - ONTARIO CHAPTER
As is the case with initiatives that are spirited by
hope and strive to bring about change, many people
contributed their energy, ideas and hearts to this
report, which represents the culmination of a threeyear research project partnership. The individuals
acknowledged herein contributed in a range of ways
to the project and this report, including in a volunteer
capacity. The few words offered in recognition of
them are only a small gesture compared to the
immense gratitude that they are owed.
PROJECT PARTNER REPRESENTATIVES
(2003–2006)
In 2003, the Ontario Chapter of the Canadian Breast
Cancer Foundation invited a number of key breast
cancer stakeholders to collaborate to improve breast
cancer care in Ontario. Representatives of partner
organizations served as members of the project’s
steering committee. Throughout the project these
individuals remained committed to a vision of the
project as an instrument that could lead to new
understandings and real change. They held fast to
the belief that the needs of those affected by breast
cancer must be better met, and to this end, they
provided insightful input and guidance throughout
each phase of the project.
Patricia Smith, Canadian Breast Cancer
Foundation - Ontario Chapter, Board of Directors
Carolyn Jackson, Canadian Breast Cancer
Foundation - Ontario Chapter, Board of Directors
Elaine Brown, Willow Breast Cancer Support Canada
Dallas Petroff, Willow Breast Cancer Support Canada
Jackie Manthorne, Canadian Breast Cancer Network
Bill Campbell, Ontario Breast Screening Program,
Cancer Care Ontario
Shannon Stuart, Princess Margaret Hospital Foundation
Shannon Doherty, Princess Margaret Hospital Foundation
Bette Johnston, Princess Margaret Hospital
Foundation Breast Centre Women’s Committee
RESEARCH INQUIRY
Leadership
Terry Trussler, EdD
Senior Scientific Advisor and Principal Investigator
Dr. Trussler provided ongoing strategic guidance
to the entire research project and acted as an
advisor to all aspects of the project’s work.
His role included providing guidance to the
project’s steering committee and to Canadian
Breast Cancer Foundation staff. He subsequently
analyzed and synthesized all research data to
write the project’s consultation report, entitled
“Treatment Stress: Probing Women’s Experiences
of Breast Cancer Care,” and this final report of
the project in its entirety.
The complex task of understanding and bringing
into focus the dense and poignant picture that
emerged from the project’s range of sub-studies
about breast cancer and women’s experiences of
breast cancer care rested in Dr. Trussler’s hands.
He demonstrated unwavering rigor in his efforts to
make coherent, accurate meaning of the data. His
efforts to recount and analyze the stories women
shared about their experiences of breast cancer
reflected a deep sensitivity to the women and the
stories they entrusted to the project. To his role,
Dr. Trussler brought a keen sense of responsibility to
help others understand what was learned through
the project, along with modesty about what remains
to be learned in this area of research.
Overall, Dr. Trussler’s enthusiasm for the project, and
his desire to learn and to understand better what was
being learned, nurtured a spirit of investigation that
invaluably enriched the project and its outcomes.
Studies
RESEARCH REPORT REVIEWERS
As noted, the Up Front research project included
several sub-studies. Each was led by a different team
or by an individual research consultant and each
helped to refine and elaborate the overall inquiry.
All of these contributors brought fresh insights and
energy to the project and made unique and valuable
additions to the project’s collective findings.
We are extremely grateful for the diligence and
generosity of the following three astute reviewers,
who read the full draft report and recommendations
and provided detailed feedback. Each reviewed the
report from unique and relevant vantage points and
without fail offered critical insights and suggestions
that served to significantly strengthen the report.
) literature survey
Jennifer Polzer, research consultant
) focus groups and key informant interviews
Tina Sahay, Health Promotion Consulting Group
Fred Ashbury, Partners in Creative and Effective
Program Solutions Inc.
) policy and program environmental scan
Caryl Arundel, Caryl Arundel Associates
) public opinion survey
John Pollard, Institute for Social Research,
York University
) community consultations
David Kraft, Strategic Communications
John Willis, Strategic Communications
Jennifer Dawson, research consultant
Deborah Dubenofsky
Senior Consultant, The Capital Hill Group
Director, CBCF - Ontario Chapter Board, and
member, Communications Advisory Committee
Carole Mayer
Clinical Leader/Manager of Supportive Care,
Supportive Care Oncology Research Unit & Sudbury
Genetic Counseling Services
Northeastern Ontario Regional Cancer Centre
Director, CBCF - Ontario Chapter Board, and Chair,
Community Development Advisory Committee
Dr. Shailendra Verma
Medical Oncologist, Ottawa Hospital Regional
Cancer Centre
Vice-Chair, CBCF - Ontario Chapter Board,
and Chair, Research and Health Care Advisory
Committee
TABLE OF CONTENTS
EXECUTIVE SUMMARY . . . . . . . . 1
INTRODUCTION . . . . . . . . . . . 3
METHODOLOGY . . . . . . . . . . . 4
PREVENTION . . . . . . . . . . . . 8
In Context
Research Literature
Up Front Findings
Policy Environment
Strategic Challenges
SCREENING . . . . . . . . . . . . . 11
In Context
Research Literature
Up Front Findings
Policy Environment
DIAGNOSIS . . . . . . . . . . . .
In Context
Research Literature
Up Front Findings
Policy Environment
14
TREATMENT . . . . . . . . . . . .
In Context
Research Literature
Up Front Findings
Policy Environment
17
CONTINUING CARE . . . . . . . . .
In Context
Research Literature
Up Front Findings
Policy Environment
20
NEW PERSPECTIVES . . . . . . . .
Participant Recommendations
23
COMMUNITY CONSULTATION . . . .
Process
Results
Improving Breast Cancer Care
Discussion
26
ACTIVATING UP FRONT:
REPORT RECOMMENDATIONS . . . .
Discussion
Recommendations
REFERENCES . . . . . . . . . . .
34
39
EXECUTIVE SUMMARY
A breast cancer diagnosis is an everyday reality for
Ontario’s health care system, where it occurs more
than 8,000 times a year. But former patients often
remember their lives being shattered in the moment
of their diagnosis. Many recall their subsequent
experiences in treatment for breast cancer as
exceedingly stressful events.
To find out why and how to help, the Ontario Chapter of
the Canadian Breast Cancer Foundation and its partners
undertook a research inquiry to speak directly with
women about their experiences in breast cancer care.
This is a summary account of the complete initiative.
Up Front used a range of methods over three years
to bring women’s experience into focus:
) A review of recent research on women’s
experience of breast cancer care;
) In-depth interviews with a diverse sample
of 15 care providers, former patients and
informal caregivers;
) Eight focus groups with 34 former patients
from across Ontario;
) An extensive scan of the cancer care policy
environment;
) A telephone survey of 802 women who have
never been diagnosed;
) A community consultation involving 137
former patients, held throughout Ontario; and
) Consultations with 26 cancer professionals,
held in Ottawa, Toronto and Sudbury.
toward kinder care
Wherever the project went, the views that
participants expressed — whether in focus groups
or community forums — had a high degree of
concurrence. While some regional differences
emerged, the deliberations were remarkably
consistent whether from north or south, rural or
urban Ontario. Our research revealed that most
former patients experienced a difficult path through
treatment. Only a small minority reported that
their care had lived up to their expectations.
Research participants told us that fighting
breast cancer is “as much emotional as it is
medical.” Women, they said, “should not have
to struggle with the system while struggling
with
cancer.”
From
experiencing
booking
errors to finding themselves a “go between” among
professionals, participants described how stress
mounts up in having to coordinate, manage and
navigate one’s own care without much direction or
emotional support along the way. Summing it all up,
the main message was that having breast cancer is
stressful in its own right, but that the health care
system often makes it even more so.
By contrast, a small minority of participants reported
experiences of “excellence” in their care, “fabulous
providers” and “no problems,” which seemed to
underline inconsistencies that most other former
patients cited. Interestingly, the larger sample of
former patients participating in our community
consultation brought out a small number of women
who had experienced optimal breast cancer care.
Their outlook on the health system, its providers
EXECUTIVE SUMMARY
1
and their own lives stood out sharply against the
experiences of other participants. What could make
treatment for breast cancer a “wonderful”
experience? The main ingredients seemed to be
what most other participants wished for: “informed”
participation, “emotional support” and “timeliness.”
uncertain circumstances they found themselves in.
They recalled feeling angry and resentful, rather
than empowered, by having to navigate their care
path without support. Most participants in the
inquiry wanted navigation assistance in the form of
a supportive professional.
PRINCIPAL FINDINGS
Provider Knowledge
Most former patients had more critical observations
about breast cancer care. Women who had been
through it told us about inherent structural
weaknesses in the cancer care system that made
their course of treatment appear to have no defining
compass and no one responsible for steering them
through it. The impact, they pointed out, only
worsened the apprehension and anxiety they were
already feeling with their cancer diagnosis.
Our research participants often expressed
disappointment with the breast cancer knowledge
of their primary providers. “What is the role of doctors
if they aren’t the experts?” Family practitioners
in particular were seen to be deficient in their
knowledge of symptoms, treatment information,
follow-up care and cancer-system navigation in
general.
Standards of Care
Communication/Coordination
Linkages among providers were largely perceived as
problematic. Former patients described their care
trajectory as “disjointed,” “lacking continuity” and
“riddled with gaps.” Professionals “not being in touch
with each other” was commonly cited as a flaw in
the system that not only aggravated patient anxiety,
but also, in some cases, instigated clinical errors.
Emotional Support
The emotional shock of a breast cancer diagnosis
was a common theme, frequently reported as an
unrecognized psycho-social issue affecting the whole
course of breast cancer treatment. While care of the
“physical body” was perceived as satisfactory, the
care of the “whole person” was generally perceived
as “sorely lacking” and at worst “inhumane.”
Treatment Information
Accessing reliable information was seen to be a
fundamental need frustrated by emotional turmoil
and systemic inconsistencies. “I didn’t know,” “no
one told me” and “I had to find out on my own” were
common reflections. Feeling “numb and dumb” with
their diagnosis, former patients described being
unable to absorb critical information required to
participate in decisions about their care.
Navigation
Many former patients wondered about the existence
of standards of care for breast cancer treatment,
and if so, whether they were actually being applied.
Most of these issues appeared to be experienced to
a greater extent by low income, aboriginal,
immigrant and rural women. Ironically, those
women who could least afford the burdens of illness
often had higher associated costs due to their
distance from facilities and the extra demands
brought about by travel and absence from home
and family.
The Up Front project presents a coherent summary
of women’s experiences with breast cancer that
demonstrates where systemic improvements could
benefit all Ontario cancer patients. Our participants
told us that patients should not have to manage
their own care for fear of “falling through the
cracks” and that cancer care should not take “years
to get over.”
The Canadian Breast Cancer Foundation and its
partners are in a good position to make a difference.
Women from all over Ontario told us they expect
more of cancer care. This report’s recommendations
support ventures that show potential to make
prevention information more useful, screening more
pervasive, diagnosis more supportive, treatment
more navigable, continuing care more accessible
and, in the end, “death kinder to women.” )(
Some former patients found it necessary to become
“aggressive” or “pushy” to “manage” their own
treatment programs out of distress with the
2
EXECUTIVE SUMMARY
INTRODUCTION
Former breast cancer patients have been describing
distress with various aspects of cancer treatment for
years, but little evidence existed that told the whole
story. “Until you’ve been diagnosed, you don’t really
know,” is a commonly heard reflection. So, with the
future of breast cancer care in mind, the Ontario
Chapter of the Canadian Breast Cancer Foundation
undertook a community-based research initiative to
speak directly with women about their experiences.
The goals of the project:
1) Understand breast cancer care’s strengths,
limitations and emerging issues
2) Develop partnerships for change
3) Create strategies to address gaps
4) Inform funding priorities
Conducting this inquiry involved a prolonged and
rigorous process to reveal the character of the
interface between breast cancer care services and
ordinary people. Partnerships were formed with the
Canadian Breast Cancer Network, the Ontario Breast
Screening Program (OBSP) of Cancer Care Ontario
(CCO), the Princess Margaret Hospital Foundation and
Willow Breast Cancer Support Canada. The initiative
aimed to produce evidence for the Foundation’s own
planning and to influence developments in the
health care field wherever possible.
The World Health Organization believes that
community health organizations have an important
role to play in reorienting health systems. Research
efforts are widely regarded as essential to the
process. The Ottawa Charter for Health Promotion
encourages community organizations to take the
lead in “shaping health policy,” “creating supportive
toward kinder care
care environments” and “strengthening skills for
health improvement.” Community-based research
facilitates this process by organizing a framework
in which people may learn collectively what needs
to be done and how to move forward.
The most extensively acclaimed model of community
health planning, Precede-Proceed, sets out several
phases of research to accomplish these goals. 41
According to decades of experience, health
promotion planning initiatives have proven most
effective when “preceded” by extensive investigation
of the “social,” “behavioural” and “environmental”
conditions surrounding a health issue, taking into
account existing “educational,” “organizational” and
“policy” arrangements. The Up Front project is just
one example of numerous investigations worldwide
validated by the Precede-Proceed Health Promotion
Planning Framework.
One of the many concerns of this project was the
role of social determinants, the socio-economic
factors that influence health beyond those in
individuals’ personal control. Many chronic diseases,
breast cancer included, are known to have greater
impact on people with less income, education and
social power. It has been demonstrated that lowerincome women, for example, have less frequent
diagnoses of breast cancer but greater mortality.
Research in Ontario has shown that this
inequity is not alleviated by universal health care. 46
To illuminate the role of social determinants, the Up
Front project undertook a concerted effort to
include lower-income, rural, aboriginal and
immigrant women amongst those who shared their
experiences in the inquiry. )(
INTRODUCTION
3
METHODOLOGY
This report synthesizes the findings of several
sub-studies. Each was guided by a general
inquiry framework, moving stage by stage
through an iterative process, over a three-year
time frame. The final result brings together both
qualitative and quantitative methods to inform
a descriptive account of breast cancer care in
Ontario from the perspectives of those who
know it directly in their own experience. Such
“mixed-method” studies are increasingly
regarded as a powerful way to explore practice
and policy in health care.
of 46 research reports was selected for extensive
review and synthesis. The sampling procedure
included research conducted in Ontario and
nationally that investigated women’s experiences
with breast cancer, including unmet needs across
the cancer care continuum, encounters with
cancer care services and special needs or
inequities. To narrow the field for the purposes
of the project, the literature review excluded
bio-medical research on such issues as the
causes of breast cancer, prevention and risk
reduction.
Each of the studies underlying the Up Front
project produced a final report detailing
methods and findings. The following summarizes
the methodological considerations of each substudy to describe the extent of the knowledge
development effort represented by this report.
The synthesis used matrix analysis to summarize
the contents of each selected research article
under the following headings: objectives,
methodology, findings and recommendations.
Each article was reviewed thoroughly and
relevant details were reported in the matrix. The
final report extensively described the literature
review process, summarized the general findings
and detailed the contents of the 46 articles
selected for synthesis. The summary and
synthesis were then used to inform the further
stages of the Up Front project, including the
final report.
LITERATURE REVIEW
To launch the Up Front project, a systematic
literature review was conducted by an
independent consultant. The review process
began with hundreds of abstracts published
between 1998 and 2004, but only a sample of
the most relevant could be selected for the
purposes of the project. Narrowing the field
required orderly procedures to be developed,
focusing on the project’s goals to investigate
women’s experiences of breast cancer care, with
particular regard for the impact of social
determinants of health.
An initial field of 734 abstracts was eventually
reduced to 183, and finally a purposive sample
4
METHODOLOGY
QUALITATIVE STUDIES
To conduct the primary study of experiences
with breast cancer care, the Up Front project
selected an experienced health care consulting
group from a request-for-proposal process.
Their research used in-depth interviews to
generate qualitative data on breast cancer care
in Ontario. Key informants, who either worked in
cancer care or who had intimate experience with
it, were interviewed by telephone. Systematic
efforts were made to ensure a diversity of
perspectives
and
experiences.
Fifteen
stakeholders were chosen for the interview
panel, including women recently recovering
from treatment, their informal caregivers,
professional care providers and program
administrators. The interviews were audiotaped
and the recordings transcribed verbatim.
cancer. The audiotaped interviews were
structured using themes generated from the
key informant interviews. Transcripts from
these interviews were combined with the focus
groups for subsequent analysis.
Members of the research team reviewed the
transcriptions independently and subsequently
used a consensus process to build an analytical
framework. The contents of the interviews were
analyzed for perceptions concerning gaps and
challenges in breast cancer care as well as ideas
about improving conditions. This process
disclosed an array of themes that captured the
main content of the interviews:
SURVEY RESEARCH
) care coordination
) emotional and practical support
) treatment information
) provider-patient communication
) distance from care
) wait times
) provider roles
A second stage of the qualitative study used
focus groups with women who had been through
breast cancer treatment and an additional series
of telephone interviews with informal caregivers.
The study team enlisted the assistance of local
treatment support group facilitators to identify
potential focus group participants. Five focus
groups were carefully recruited to achieve a
diversity of regional, cultural, age-group and
stage-of-treatment perspectives. A total of 34
women participated, including those in palliative
care, recent immigrants, young mothers with
children, rural residents and aboriginals. The
focus groups were held in Sudbury, Peterborough,
Waterloo and Toronto. Each was conducted as a
structured experience using themes gathered from
the key informant interviews as a springboard for
discussion. The sessions were audiotaped and
transcribed verbatim.
An
additional
10
telephone
interviews
were conducted with informal caregivers,
including spouses, sisters and daughters of
women who had been diagnosed with breast
toward kinder care
The qualitative studies were completed by a
formal research report that included a full
description of the process, recruitment methods,
analytical strategies and findings.
To obtain a broad view of women’s knowledge and
experience of breast cancer, the project enlisted
the services of York University’s Institute for Social
Research to conduct a public opinion survey. The
survey was designed to probe the experiences
of women who had never been diagnosed with
breast cancer.
A representative sample of Ontario women was
generated using random digit dialing (RDD)
methodology. Using RDD gives all households,
urban or rural, and not just those with listed
numbers, an equal chance of being selected.
Interviews were conducted with 802 adult women,
18 years of age or older. This response rate was
64.3% of 1248 households deemed eligible from
the RDD procedure. Findings from a sample of this
size are considered an accurate representation
of the population within plus or minus 3.5
percentage points, 19 times out of 20.
The questionnaire was developed and validated
in an iterative process to determine final wording
and the order of questions. A formal pretest was
used to check women’s understanding of the
questions and the overall flow of the interview. Due
to the intimacy of the survey topic all interviews
were conducted by women. Survey respondents
were probed on the following topics:
) most important health problem
) breast health behaviours
) likelihood of getting breast cancer
) knowledge about breast cancer
) breast screening and barriers
) prevention
) information needs
) advocacy
) demographics
METHODOLOGY
5
A comprehensive report of the general findings
and specific information about variances among
different groups of women was produced from
the survey.
POLICY ENVIRONMENT SCAN
The Up Front project enlisted a consultant to
examine the existing policy environment for
breast cancer programs and services. The
environmental scan included a review of relevant
literature, policy documents and interviews with
15 stakeholders from Ontario and elsewhere in
Canada.
The scan considered both Ontario and national
contexts as well as those of Australia, New
Zealand, the United Kingdom and the World
Health Organization. Policies, programs and
initiatives were investigated and compared,
including those of both government and nongovernment organizations.
The scan reviewed documents to investigate
stated policy and program directions, but not their
implementation. Stakeholder interviews provided
opinions and perspectives on how policy
implementation was working on the ground. A
complete report of the environmental scan was
produced considering policy on breast cancer
under the following themes:
) policy change and uncertainty
) rebalancing preventive, supportive
and palliative care
) system access and coordination
) system issues: treatment costs,
human resources and aging population
) accountability
) advocacy
COMMUNITY CONSULTATION
Once all phases of the foregoing research had
been synthesized, the Up Front project undertook
a consultative initiative to share the main
findings with select communities across Ontario.
The consultation invited women with breast
cancer experience and their caregivers to
compare the research findings with their own
experiences, provide feedback on relevance and
6
METHODOLOGY
contribute further suggestions toward improving
the system of care. Health care and social service
providers were invited separately to consider
Up Front findings from their professional
perspectives.
Foundation volunteers and staff succeeded in
hosting eight discussion forums in Ontario
communities, bringing together 163 individuals in
all. Consultations involving a mix of 137 former
patients and their caregivers were held in Ottawa,
London, Toronto, Etobicoke, Scarborough,
Sudbury, Sault Ste. Marie and Timmins. A separate
series of discussions involving a total of 26
professional providers was held in Ottawa,
Toronto and Sudbury.
The consultation process presented a structured
format for public discussion of breast cancer
treatment and care. Participants were invited to
share experiences and make recommendations
about how the breast cancer care system could be
strengthened. The discussion format probed
participants’
experiences
with
prevention,
screening, diagnosis and all phases of treatment.
Systematic procedures were used to document
what participants had to say. Designated note
takers were provided with a training brief in
advance and a structured workbook where they
could record small group proceedings, including
the verbatim comments of participants. A group
of note takers used laptop computers to record
dialogue in plenary discussions. Participants
were provided a further opportunity for private
comment on a program evaluation form.
All materials were transcribed and compiled into
a complete electronic text of the community
consultation. A research consultant sorted the
content to expose the main themes of the
discussion. Subsequent analysis examined the
content of participants’ talk for richly descriptive
accounts of lived experience with breast cancer
care. Samples of text recalling vivid personal
encounters or critical incidents were selected to
illustrate how breast cancer care is perceived
first-hand. These were compared with material
from the qualitative research phase of the
project to validate the findings.
UP FRONT REPORT
LIMITATIONS
To synthesize the preceding studies the author
employed matrix analysis to assemble a complete
picture of the inquiry. The matrix frames the
majority of the report in chapters representing
the breast cancer care continuum: prevention,
screening, diagnosis, treatment and continuing
care. Each continuum chapter subsequently
reviews significant findings from the inquiry by
drawing from the sub-studies under the following
headings:
The result of this complete process has produced
a rich account of breast cancer care in Ontario
from the perspective of those who know it best
from their own experiences. It should be kept in
mind that this research was exploratory. Its main
purpose was to consider cancer care practices,
policy and programs in terms of what women
and their caregivers experience. Given these
limitations, this report is not an evaluation of
Ontario’s cancer care services. However, the
findings may be useful in developing future
evaluative studies, generating hypotheses
for further research, providing fresh insights
into the complexities of patient experiences
in treatment or inspiring new approaches to
cancer care programs. )(
) In Context
) Research Literature
) Up Front Findings
) Policy Environment
In Context: These segments introduce the subject
of each continuum chapter, setting the context for
what was learned in the inquiry. The content of
these segments was derived from a broad
interpretation of all data from the inquiry and a
much wider reading of related research and media
on breast cancer.
Research Literature: Relevant studies of breast
cancer and its treatment are interpreted in
these segments. Only those studies selected for
inclusion in our inquiry on “women’s experiences
of breast cancer” are covered in this section.
Up Front Findings: Data derived directly from our
research subjects in various parts of the study
such as interviews, focus groups and the public
opinion survey are reviewed and interpreted in
these segments.
Policy Environment: These segments review
relevant policy documents recovered in the scan.
Participants in sub-studies reviewed in this report
provided many suggestions for the improvement
of cancer care services. These are described in
detail at relevant points in the document.
toward kinder care
METHODOLOGY
7
PREVENTION
IN CONTEXT
Until we know for certain what causes breast
cancer there can be little real certainty about how
to prevent it. Stopping cancer from developing in
the first place is the desired goal, but one that is
hindered by current scientific knowledge. Breast
cancer’s strong association with reproductive
hormones seems clear, but the mechanisms that
lead to breast cancer remain elusive. Indeed,
breast cancer appears to have multifactorial
origins, which might include a mix of predisposing
conditions, lifestyle factors, substance exposures
and individual genetic makeup.
Currently, breast cancer prevention is best
expressed in terms of reducing risk factors. Since
some of the known risk factors may be controlled
and others cannot, prevention means in effect
acting on the reducible risks. Family history
and aging are non-modifiable; however, healthy
body weight, exercise and diet can be controlled.
Hormone replacement therapy may be eliminated
or limited for menopausal conditions. Exposure
to toxic chemicals found in detergents, pesticides
and plastics can be reduced, but less so when they
persist as low-level environmental contaminants.
In the absence of scientific certainty, breast
cancer advocates are taking a precautionary
approach by urging women to reduce all the risks
they can manage.
8
PREVENTION
There is little certainty that risk reduction will
prevent breast cancer in everyone, but there is a
growing belief that alerting women early will have
a payoff in terms of the whole population.
Research evidence indicates that breast cancer
incidence can be reduced theoretically by 30% in
this way, although it would be impossible to
predict which individuals would benefit. The aim
would be to shift risk factors in a favourable
direction over the entire population. For instance,
banning known carcinogens in the workplace and
industrial waste might have such a broad
population effect.
In the meantime, research into the cause of breast
cancer will continue to disclose new approaches to
prevention. It may only be a matter of time before
science produces an answer that will prevent
much more breast cancer than women currently
experience.
RESEARCH LITERATURE
In view of the project’s focus on women’s experience,
our review of prevention research concerned
studies of women’s awareness, perceptions and
assumptions about the risk of developing breast
cancer. These studies tend to show that women’s
perceived risk of developing breast cancer is often
inflated. Indeed, most women seem to experience
some degree of “breast worry” depending on
family history and exposure to cancer in other
women around them. 58
One problem is knowledge. In spite of recent
attempts among community cancer organizations
to make risk factors and risk reduction practices
clearer, research continues to show that few
women have sufficient knowledge for breast
cancer prevention. Women are most likely to say
that family history or lifestyle are risk factors.
Yet, only 5–10% of breast cancers are thought
to be inherited. Thus women who emphasize
family history tend to overestimate their personal
risk and underestimate their capacity to act on
prevention. The often repeated “1 in 9 will get
breast cancer” message may be contributing to
similar misconceptions. 9, 24
Even so, the way in which perceived risk translates
into personal action on prevention is rarely very
direct. As with many health issues, only a small
proportion of women who do know their risk
factors seem to take preventive action.
Genetic screening has raised additional worries
among women with family histories of premenopausal breast cancer; however, the role of
genetic screening information raises considerable
doubts about what steps to take next. Since
prophylactic mastectomy or oophorectomy
(removal of the ovaries to limit the supply of
estrogen) are often the only available solutions,
and not all of those genetically predisposed will
get breast cancer, these women need specific
information and support.24
Studies of cultural and language factors have shown
that the ways in which cancer and risk are described
by providers and resource materials affect the
message women receive. Immigrant and aboriginal
women often need information to be delivered in a
way that respects their cultural perspectives. Thus
there continues to be a need to develop approaches
to risk communication and breast health education
that are culturally sensitive. 8
UP FRONT FINDINGS
Most of what the project learned about perceptions
and beliefs about breast cancer prevention emerged
from the random sample telephone survey of 802
women from across the Ontario landscape.
toward kinder care
Breast cancer certainly is a “top of the mind”
health issue and most often mentioned. Breast
cancer was the first mentioned, most important
issue for 40% of those surveyed. By comparison,
other cancers were considered most important by
21% and heart disease by 14% of respondents.
The reality is that heart disease is by far the leading
women’s health issue. The more educated women
of the survey were most likely to have known
this. It seems clear that women are very attuned
to breast cancer even if they do overestimate its
importance relative to other health issues. But
does concern lead to action?
The survey asked women what they do to maintain
their health. About 67% claimed that they
engaged in physical activities or exercise. About
63% said they tried to eat a healthy diet. Higher
income, more educated women were most likely
to have engaged in these activities.
The survey also probed smoking and drinking.
Only about 15% of the women surveyed were
“daily” smokers and 5% “occasional.” About 64%
of survey respondents were “moderate” drinkers;
21% were “near-daily drinkers” and 15% were
“non-drinkers.” Household income seemed to make
little difference to smoking or drinking behaviour.
Women’s perceptions about the cause of breast
cancer might offer insight into their beliefs about
its prevention. The survey found that the most
often mentioned cause was “family history,” by
35% of the sample. The next most commonly
mentioned causes were “smoking” (7%) and
“pollution” (6%). These findings certainly reflect
many uncertainties. Rightly or wrongly, women
seem attuned to breast cancer in their families,
and this has an important bearing on how they
perceive their personal risks.
The survey probed perceptions and misperceptions.
About 38% of participants, apparently provoked
by intense concern about the issue, felt they were
likely to get breast cancer. The actual lifetime
probability is one third of that: 11.4%. Nevertheless,
in reverse of expectations, the survey found that
65% of older women felt themselves to be less at
risk, even though the likelihood of getting breast
cancer increases with age.
PREVENTION
9
POLICY ENVIRONMENT
STRATEGIC CHALLENGES
Cancer prevention has taken on a sense of
urgency in recent years, as health authorities
have come to recognize the looming potential for
a surge in society’s burden of cancer resulting
from population aging. Cancer specialists are
realizing that it may be worthwhile to pursue
moderate reductions in cancer incidence by
doing prevention aggressively, even if the causes
are not perfectly clear. Lowering the number of
new cancers would reduce pressures on the care
system so that those who do get cancer will get
better support. This forward thinking approach is
known as “cancer control.”
If breast cancer incidence can be reduced by 30%
through reducing controllable risk factors, what
kinds of contributions would help to reach this
goal?
Since the underlying cause and associated risks of
breast cancer are still unknown, what should done
in the meantime? )(
Generally, there has never been a time where
interest in cancer prevention has been greater
than it is now.
Canadian Strategy for Cancer Control (CSCC)
National policy on cancer is organized in the
Canadian Strategy for Cancer Control (CSCC).
The aim of the prevention policy is to create a
prevention “system” by organizing the many
community-level cancer organizations that
already exist. Cancer-control prevention strategy
emphasizes whole population approaches that
would change people’s environments to support
health. This is “big picture” prevention where
people change because their environment
changes, e.g., healthy school lunches, workplace
fitness programs. 12
Cancer 2020
Cancer 2020 is Cancer Care Ontario’s plan to
reduce cancer incidence. Cancer Care Ontario
is an organization that steers and coordinates
Ontario’s cancer services and prevention efforts,
and is the provincial government’s chief cancer
advisor. The plan is forged in the view that, even
without full scientific evidence for cause-andeffect relationships, it is still desirable to reduce
exposure to any potential causes of cancer.
Cancer 2020 aims to reduce breast cancer
incidence 30% by focusing on diet and physical
activity. The plan outlines an overall preventive
strategy that includes tobacco use; diet and
nutrition; healthy body weight; physical activity;
alcohol consumption; occupational carcinogens;
environmental carcinogens; ultraviolet exposure;
and viral infections. 22
10
PREVENTION
SCREENING
IN CONTEXT
The aim of breast cancer screening is to detect
“smaller tumours earlier,” guided by the assumption
that timely surgery and treatment increase the
likelihood of long-term survival. Not all breast
cancers, however, behave so predictably in a
diverse population. Thus, studies evaluating the
effectiveness of screening techniques, especially
mammography, have yielded controversial results.
Depending on a variety of factors, including age
and screening intervals, the evidence either does
or does not show an improvement in the chances
of surviving breast cancer.
age range. One of the problems with knowing more
accurately how many women participate is that
only about 40% of all mammography in the
province is currently conducted by the Ontario
Breast Screening Program (OBSP), which operates
in dedicated breast screening centres, affiliate
sites in hospitals and a mobile coach in the north.
The balance is conducted in diagnostic clinics
that bill the Ontario Health Insurance Program
(OHIP) for mammography services. The goal of
the OBSP is to increase participation to 70% in
its clinics. 45
Most cancer care organizations endorse
screening, despite the controversy. Mass
screening mammography is thought to have
played a key role in a 30% reduction of breast
cancer mortality over the last decade. The
explanation for improved survival is likely a
combination of factors, including early diagnosis,
multi-disciplinary care and improved treatments.
Screening widely, across the whole population of
women, is thought to have contributed to finding
cancers before they were otherwise detectable
and could do more damage or negatively affect
survival. Cancer control advocates continue to
believe that increased screening participation will
improve survival and will also decrease pressures
on the health care system.
Another controversy for screening programs
is the age range. The best available evidence
suggests that screening mammography can
reduce mortality by 35% in the 50–69 age cohort.
The OBSP suggests screening at least every
two years for women in the 50–74 age range. In
British Columbia and the United States, screening
is recommended for women starting at 40.
Screening in the 40–49 age group, however, is at
the heart of the age-range controversy because
mammography appears to be least beneficial to
this group. Nevertheless, screening advocates
point to the increasing number of breast cancer
cases found among women in their forties as a
reason to encourage mammography despite the
controversy.
Participation in screening mammography is
considered to be sub-optimal in Ontario, calculated
as low as 27% and as high as 58% in the 50–74
Screening mammography is still considered the
best hope for women’s survival. The urgent need is
to increase participation. Whether the controversy
toward kinder care
SCREENING
11
has caused some women to doubt their need for
screening is unknown. Advocates are searching
for ways to get as many as 90% of women over
50 out for regular mammograms.
RESEARCH LITERATURE
Our exploration of recent research on women’s
experience of breast cancer screening produced
studies investigating the influences on and
obstacles to participation. Ironically, women of
recommended screening age (over 50) seem
to perceive a greater number of obstacles than
younger women. Women of all age groups, however,
have been shown to have more confidence in the
tumour detection capabilities of mammograms
over clinical breast examination (CBE) or breast
self-examination (BSE). It seems the greatest
influence on having a mammogram is the advice
of a physician. One of the major barriers is fear of
finding cancer. 4, 61
Due to concerns about broad participation some
recent studies have focused on the screening
experiences of women from diverse cultural
backgrounds. This research has shown that
immigrant and aboriginal women experience
significant cultural and language barriers. Women
from some ethnic cultures may misperceive
themselves to be at lower risk than other Canadian
women. Participation may also be impeded by
cultural codes framing modesty or privacy issues
for some immigrant and aboriginal women. These
studies often recommend language-appropriate and
culturally sensitive outreach strategies to improve
screening participation in such groups. 1, 2, 4, 62, 64
While research on breast cancer and women with
disabilities is apparently quite limited, one study
revealed that multiple physical barriers prevent
access to screening facilities and machines.
Obstacles to participation included screening
site locations, transit availability and the physical
accessibility of entrances, parking, elevators,
doors, waiting rooms, washrooms, changing rooms,
mammography rooms, mammography equipment,
ultrasound equipment and biopsy rooms. 5
Due to the growing demand for genetic screening,
recent studies have been investigating women’s
experiences with test results and implications for
care. Genetic screening has been shown to induce
intense levels of distress and anxiety among
women with positive results. The benefit these
12
SCREENING
women see in knowing their genetic predisposition
is that it increases their vigilance over changes
in their breasts. While most apparently do not
favour prophylactic mastectomy as a preventive,
some see oophorectomy as a more acceptable
alternative. In this way genetic screening
has raised a range of specific emotional and
information support needs. 28, 47, 56
UP FRONT FINDINGS
Most of what we learned about experiences with
breast cancer screening came from our survey of
802 Ontario women.
Women generally know the most obvious symptom
of breast cancer: 84% knew that a “lump in the
breast” was a symptom; 23% mentioned “pain”; and
18% a “discharge from the nipple.” Other signs and
symptoms were less frequently mentioned. Slightly
over half of the respondents could identify only one
symptom, and 11% did not know any symptoms.
Clinical breast exams (CBE) were a commonplace
experience: 91% of our survey respondents reported
having had a clinical exam: 61% “within the last
year”; 25% “within 1–2 years”; and 14% “more than
2 years ago.” A majority of the 9% who had had no
clinical exam were under 40.
As many as 91% of survey respondents reported
examining their own breasts: 46% “monthly”; 23%
“every 2–3 months”; and 29% “not in more than a
year.” Those more likely to believe they would get
breast cancer were more likely to examine their
breasts. Three-quarters of the women who did not
examine their breasts did not think they would get
breast cancer.
Rural women were more likely to examine their own
breasts than urban women: 95% v. 90%. Immigrant
women were less likely to examine their breasts
than those born in Canada: 84% v. 93%. Women’s
tendencies to examine their own breasts did not
appear to be related to their education. Asked where
they got their information about examining their
breasts, 88% reported being given material: 67%
by doctor or nurse, 9% from the popular media, and
5% through the OBSP.
Participation in mammography was surprisingly
strong in spite of the controversy surrounding
it: 97% of survey participants knew the term
“mammogram.” Considering all age groups, 54%
of survey respondents reported ever having a
mammogram: 38% every 2 years; 30% every year;
and 5% every 3 years. Considering women by age
group, 92% of survey participants over 50 had ever
had a mammogram, while the figure was 57% of
those 40–49, and 10% of those under 40.
Concerning their knowledge of the target screening
age, 34% of survey respondents correctly identified
50, while 45% thought it was 40. Younger women
with less education were likely to think the target
age is younger, while older women with more
education were more likely to believe the age is
50. One interpretation of the survey results is that
many women believe that mammography should
start at 40.
The OBSP appeared to be less widely known than
mammography in general. Fifty-two per cent of
survey respondents had heard of the OBSP; 7%
were unsure; and 41% had never heard of it. Twentyfive per cent of those who knew the OBSP had heard
about it from their doctor.
Age was the strongest predictor of who knew about
the OBSP. Women over 50 were most likely to know
of the OBSP. Women born in Canada were also
more likely to know the OBSP, as were rural women.
Lower-income women were less likely to know the
OBSP. Toronto women were least likely to know of
the OBSP.
Considering the strength of participation, belief in
the effectiveness of screening was not as solid as
expected. Forty-eight per cent of survey respondents
believe mammograms can detect most cases, while
43% believe that screening their own breasts can
detect only some cases, and 40% believe that
clinical exams can detect only some cases.
In thinking about ways to improve participation, the
survey asked how respondents would feel about
receiving a “prompt letter” from a provincial health
agency. Eighty-five per cent of respondents aged
50–74 would welcome a prompt letter, but this figure
decreased to 76% with the knowledge that health
records would be reviewed. Women 50 or older
were less likely to agree that reviewing their health
records was appropriate.
POLICY ENVIRONMENT
Screening has had longer and stronger acceptance
than primary prevention in breast cancer control
strategy.
Screening mammography is seen by the CSCC
as a vital contribution to cancer control goals,
though quality improvements are desired. Cancer
specialists know that abnormal mammograms
cause much distress and suggest that there needs
to be a universal agreement on the appropriate
management of people with positive results. The
strategy suggests screening must be supported by
public education, including education about primary
prevention when applicable. The CSCC also stresses
that education must address the cultural and
linguistic diversity of the population and the unique
needs of hard-to-reach groups. 13
Cancer 2020 Cancer Care Ontario
Breast screening is involved in a general strategy
to reduce the impact of all cancers. The plan is to
increase the participation of women aged 50–69,
currently estimated at 62%, to 90% by 2020. 22
Ontario Cancer Plan 2005-2008
The plan states: “All breast screening in the
province should become affiliated with the Ontario
Breast Screening Program as a means to support
recruitment and quality targets.” 20
If the cure rate through early detection can be
increased 30% by having more women screen
regularly, what contributions would help to reach
this goal?
Since screening centres are considered to be the
ideal place to educate about breast cancer and its
prevention, what contributions would optimize this
opportunity? )(
Women over 50 who had not had a mammogram (8%)
were asked “why?” “My doctor hasn’t suggested it,”
was the top reason.
toward kinder care
SCREENING
13
DIAGNOSIS
IN CONTEXT
Receiving a diagnosis of breast cancer is
commonly recalled as a shattering moment, and
yet, the news is delivered much the same way
thousands of times a year in Ontario’s health
care system. The suffering that so many women
experience amply demonstrates there is a service
gap in breast cancer care that begins at the point
of delivering the diagnosis.
Ontario’s array of breast cancer care service
organizations and care facilities is widely
acknowledged by many of its own professionals
to be fractured and unfocused.20 The absence of
links among providers, care path coordination
and navigation support impacts on what women
experience as they undergo treatment, starting
with their breast cancer diagnosis. Largely
because there is no link to a supportive care
service, emotional support is commonly absent
when the diagnosis is delivered. The trauma
that many women experience thus remains
unacknowledged and the consequences persist,
sometimes for years later.67
In most cases a breast cancer diagnosis is
delivered by a surgeon, who may be professional,
caring and supportive, but not linked to the cancer
care community in a way that offers immediate
support to the patient. If the diagnosis is delivered
in the surgeon’s office or at a hospital, women
commonly experience the complete absence of
a cancer care structure they can feel confident
about. For several reasons, including supportive
care needs, integrating surgeons into the cancer
care system seems a good idea. The difficulty is
14
DIAGNOSIS
that few surgeons specialize in treating cancer,
let alone breast cancer.
It has been shown that the way in which a breast
cancer diagnosis is delivered may influence a
woman’s trajectory over the entire course of
treatment. Most women report some form of
shock with their diagnosis no matter how well it
was delivered. Patient support needs at that
moment are largely informational; however, their
emotional state plays a significant role in their
receptivity and ability to make critical decisions.
Former patients call it the “numb and dumb”
stage.
A breast cancer diagnosis may involve several
steps through imaging, biopsies and other tests
before being confirmed, and thus wait times at
each stage play a role in patient distress. Women
told us that discrepancies in information, conflict
between providers and system fragmentation
intensify stress while they are already in a
stressful state. It was quite common for women
to say they had to insert themselves aggressively
into the management of their care.
RESEARCH LITERATURE
Our review of research featuring women’s
experience of a breast cancer diagnosis showed that
patient-physician communication affects patient
satisfaction as well as general health outcomes.
Much of the research demonstrating the need for
supportive care at the time of diagnosis has been
almost exclusively related to breast cancer.
Lengthy wait times from abnormal mammograms
are associated with ambiguity, anxiety and
fear. 27 Approximately 7–10% of women screened
will receive abnormal results, and 80% of
abnormal screens will not be cancer. Anxiety
about abnormal mammograms disrupts personal
and family life and may affect willingness to
continue screening at recommended intervals.
This evidence only serves to underline the
degree of anxiety and fear experienced with an
actual cancer diagnosis. 54, 55
Cancer specialists have suggested that an
ideal care model for breast cancer would use
facilitated referral to “integrated diagnostic
units,” combining imaging, biopsies and support.
However, few completely integrated diagnostic
centres for breast cancer actually exist, largely
because of the system’s disconnect with surgical
practice. 14, 55
Studies have found that the most significant
factor in the long-term psychosocial adjustment
of women with breast cancer was their perception
of the way the diagnosis was first communicated.
Enhanced expression of physician empathy has
been shown to be associated with less anxiety in
women with breast cancer. 14
UP FRONT FINDINGS
Most of what we learned about women’s experience
of their diagnosis came from interviews and focus
groups with women who had been through it.
Evidently, no one among those who participated
in the study had experienced optimal conditions.
Women expressed a common view that the health
system left the onus on the patient to coordinate
their own care, navigate the course of treatment
and make critical decisions—often based on
confusing and contradictory information—at a
time of excessive anxiety and fear.
The common thread we found in participant
experience of a breast cancer diagnosis was the
absence of a visible care structure.
“When you’re absolutely devastated, there’s
nobody there.”
“You come out of your surgeon’s office like
Bambi in the headlights.”
toward kinder care
“You feel as if you’re not being taken care of
because you’re seeing a surgeon, you’re one
of thousands of his patients, and he’s doing
12 surgeries a day.”
Professional participants in the study also pointed
to the health care structure as the source of the
problem.
“It’s the way hospitals are organized and
managed. They’re not managed according
to a disease site.”
Study participants said they found it next to
impossible to take in information or make the key
decisions about their treatment when they were
first diagnosed. Women wondered why it was that
physicians expected the patient, often with no
support other than a pamphlet, to decide on the
course of their treatment.
“It just seemed absolutely bizarre that the
decision making would be left in my court,
and I have to make choices between things
without having any expertise to make the
decisions.”
Overall, our discussions with women suggest there
is a critical disconnect between what physicians
believe and want to do in “patient-centred practice”
and what women actually experience in their care.
“I’m the patient not the cancer expert. I’ve never
had cancer. I want to be treated as a patient.”
Participant women suggested that support should
be available from “day one” and that the quality of
care needed to consist of more than a pamphlet.
What was desired was one-on-one discussion with a
woman who has been through a breast cancer
diagnosis or with an oncologist. Personal contact
was the all-important missing link.
“They [women] need to come into contact
with this person as soon as they are told they
have breast cancer, to go from the room in
which they were told of their diagnosis into
a counselling room for information and
emotional support.”
DIAGNOSIS
15
POLICY ENVIRONMENT
Leading cancer professionals have recognized
the snag in the cancer care system during the
diagnostic period. Indeed, much of what has been
learned about the problem has emerged from
experience with breast cancer.
Statements from the Ontario Cancer Plan hint at
knowing about patients’ frustration, but offer little
specific acknowledgement of the importance of
diagnosis in the continuum.
The stated goals of the CSCC recognize supportive
care needs during the diagnostic period
predominantly for information and emotional
support. A well-integrated program would include
access to information about the diagnostic process,
the interpretation of test results and subsequently,
the opportunity to talk about the implications of
test results. 14
Based on experience with the few existing breast
assessment units, the CSCC acknowledges that
concentrating diagnostic services and medical
specialists, coupled with information and
psychosocial supports, does lead to a high level
of patient satisfaction. However, a concern is that
the benefit of completing the ideal diagnosis may
be diminished by subsequent delays in scheduling
surgery and consultation with a cancer specialist.
Cancer Quality Council of Ontario (CQCO)
The Cancer Quality Council of Ontario is a body
within Cancer Care Ontario (CCO) with a mission to
improve the quality and performance of all cancer
services so that patients receive care that is timely,
accessible and appropriate. The CQCO works to
monitor and report on the quality and performance
of the cancer system, and to provide strategies
for healthcare providers and decision makers to
improve cancer services. The CQCO’s guiding report,
Strengthening the Quality of Cancer Care In Ontario,
does not address the diagnostic period, although it
recognizes a need to improve supportive care and
wait times. 23
16
DIAGNOSIS
“For the most part there are no clearly defined
mechanisms for integrating and coordinating
cancer services across the continuum. As a result,
patients find services difficult to navigate and
they often wait too long at each point in the care
process.”
The Ontario Cancer Plan hinges on Regional
Cancer Programs that will link providers, patients,
organizations and decision makers from across
the spectrum of cancer care within a defined
geographical area. This goal may well be an open
opportunity for innovation in breast cancer care
that could eventually be applied to all cancers. 20
Since the delivery of a breast cancer diagnosis
is considered to be a crucial moment and the
current approach lacks a critical link to support and
navigation, what could be done to effect a solution?
If a patient navigator is considered so widely to be
a solution to many of the issues women face during
treatment, what would help make it happen? )(
TREATMENT
IN CONTEXT
Women we spoke with commonly experienced
breast cancer treatment as a series of isolated
encounters with individual providers who rarely
consult each other. They apparently found few
perceptible links through the course of treatment
that would give the impression that their care was
being managed.
and time issues. Increasing distance from the
cancer centre seems to intensify these issues. Even
those living in urban areas may encounter problems
with travel to treatment centres, but those in rural
areas experience long drives, accommodation away
from home, absence from the family and all the
associated costs.
Breast cancer treatment usually covers three
distinct phases—surgery, radiation and systemic
therapy. Normally, surgery is arranged at a
local hospital; however, often cancer support is
unavailable. Thus patients are frequently unaware
of a cancer care system until they arrive at a cancer
care centre for radiation treatment. Consequently,
women commonly experience their trajectory
through breast cancer treatment as fragmented,
uncoordinated and isolating. 15
Systemic therapy introduces an array of advanced
information issues associated with understanding
potential benefits and potential side effects.
This difficulty increases with participation in
experimental treatments.
Wait times are an issue with each separate phase
of treatment and each contributes to the general
apprehension patients experience.57 Surgical wait
times may vary according to the schedules of
individual surgeons or priority procedures in the
operating rooms. Surgery is generally linked to
acute care in hospitals and often lacks a crucial
connection to cancer care centres. 15
Although radiation therapy is integrated with the
cancer care system, the centralized location of
treatment equipment raises transportation, cost
toward kinder care
Navigation is widely recognized by many working
in the field to be a fundamental issue for women
trying to cope with information, communication and
anxiety issues in the cancer care service system.
Supportive care is usually unavailable for most
women until they reach a cancer centre. Even there,
many former patients we spoke with were unaware
of the existence of supportive care services.
Homecare nursing is accessible to some women
where resources are available, but those in more
distant suburban, rural and remote areas reported
problems with access. Practical support for women
with child care and household responsibilities was
often needed but unavailable, too expensive or
inaccessible. Geographic and financial inequities
often intensified these burdens.
TREATMENT
17
RESEARCH LITERATURE
Our review of research featuring women’s
experiences in breast cancer treatment uncovered
several studies of patient perceptions. This research
suggests that women’s interactions with providers
are more satisfactory when they feel that their
personal efforts at acquiring information are
valued by their provider. In such instances, women
experience more sharing of power and partnering
in decision making. Women found interactions
unsatisfactory when they felt providers “brushed
off” or “ignored” information that they had acquired
on their own. In these situations, women felt
“powerless” and provider interactions had lasting
negative effects. 5, 6
Some research has investigated the treatment
experiences of rural residents. In general, rural
women encounter exceptional burdens over the
course of their treatment: travel time to treatment;
time away from home; household management and
child care; social isolation; inaccessible supportive
care; travel costs; and unrecoverable hidden costs. 32, 39
Studies of breast cancer patients have suggested
that significant numbers experience fatigue and
excessive anxiety while undergoing treatment.
Fatigue is known to interfere with daily life more
severely than is commonly recognized. Access to
quality information and services to treat these
common symptoms remains a system concern. 3
UP FRONT FINDINGS
Participants in this study often perceived the
absence of explicit communication among the
professionals treating them as a signal that their
care was not being effectively managed. A common
reaction was for women to assume responsibility,
often quite unwillingly, for keeping track of their
own trajectory.
“The surgeon... the oncologist... the radiologist,
you don’t feel they’re a team. I never got the
impression that they talked to each other.”
“To you it feels like a life-threatening situation,
but you’re just a patient to them.”
“Half the time the chemo orders came in
wrong and the only reason they were made
right was because the chemo nurses or the
pharmacist intervened with the doctors.”
18
TREATMENT
According to what study participants perceived, the
care system they encountered lacked “standards
of practice,” or “comparable standards” to those
in the United States. These women recalled that
supportive care was not introduced until late in the
course of their treatment, and they wondered why
such an important service was unavailable from the
beginning.
Where available, the support of community cancer
organizations was appreciated; however, such
assistance was described as unevenly distributed
and volunteers as unevenly qualified. Some women
expressed disappointment with the reception and
service they received from community cancer
organizations.
Because outpatient surgery was a common
experience among study participants, home nursing
care was felt to be necessary for managing dressings
and drains. Yet such services were not consistently
available among women in the study or not available
at all to the rural residents we spoke with.
Practical household support such as cleaning and
child care was often needed but unavailable or
unaffordable to women in the study. Lower-income
women had difficulty with hidden costs such as
transportation, salve for radiation treatment, antinausea medications, wigs and prostheses.
“We’ve gone and done the fitting for the
prosthetic but I can’t afford it right now.
I have to eat, you know.”
“If I’m sick and can’t provide mothering to my
children, where am I going to get the money
to hire someone else to do the job.”
Suburban and rural residents encountered travel
issues and hidden costs ranging over the five weeks
of radiation therapy. The greater their distance
from urban centres, so it seemed, the greater the
burden.
Informal caregivers such as friends and relatives in
the study reported that they needed but could not
find information, guidance and support for their role.
It was a universal desire of the women who
participated in the Up Front project to have had a
care coordinator or navigator dedicated to providing
information, support and guidance throughout the
course of treatment from the time of their diagnosis.
POLICY ENVIRONMENT
The fractured care experience that women encounter
during their treatment is widely recognized by many
professionals working in the field.
The Ontario Cancer Plan outlines six priorities for
action:
Because surgical oncology has evolved within the
acute care sector, it has lacked formally defined
relationships with other cancer treatment disciplines.
Thus cancer surgery lacks the infrastructure,
process and systems to operate within an
“integrated” cancer program. Radiation therapy
issues apparently relate more to the capacity to
handle the number of patients coming through the
system. Systemic therapy issues evidently relate to
keeping current with newly introduced medications
and quality expectations within demanding cancer
care environments.
The CSCC believes “patient focused care” should be
a standard for all organizations involved, including
community cancer organizations. The strategy
proposes the following:
) Developing care networks between cancer
centres and community care providers;
) Optimizing communication between care
providers through electronic records;
) Developing navigation aids/navigators to guide
patients through cancer care;
) Providing patients with access to Internet sites
for information, educational materials, guidelines,
protocols, clinical trials etc.
) Respecting patients’ right to pursue
complementary and alternative health care. 15
The CQCO describes how to improve supportive
care services in Ontario:
) Obtain commitment to integrated supportive
care for patients and their families;
) Broaden the development and use of provincial
standards and guidelines;
) Implement regional cancer programs;
) Close the gap by reducing demand for cancer
services and increasing capacity;
) Implement rapid access strategies;
) Invest in performance measurement and
accountability; and
) Advance the coordination and focus of cancer
research efforts in Ontario.
Patient-focused
regional
cancer
programs
across Ontario intend to bring together regional
cancer service providers and consumers to
achieve integration and quality goals. Community
involvement will be an important dimension. As part
of their annual report to Cancer Care Ontario and
their communities, regional cancer programs will be
required to report on ways in which they involve the
public and other stakeholders. 20
The plan recognizes that innovative new
technologies
are
required
to
promote
communication between the patient and health
care providers and to help patients navigate their
way through the complex cancer system.
Ontario Cancer Plan, 2005 Progress Report
The first annual progress report of the Ontario
Cancer Plan claims that cancer services are
improving. As one example, the progress report
shows that the introduction of new radiation
equipment reduced wait times 16%, from a median
time of 5.6 weeks in the second quarter of 2004–05
to 4.7 weeks in the same time period of 2005–06. 21
) Develop and test measurement tools for key
indicators; and
Because rural and lower-income women suffer
greater burdens associated with hidden treatment
costs and travel, what should be done to support or
advocate for them?
) Obtain dedicated resources to conduct the
necessary work (information systems, clinical
resources, research resources). 23
If integrated care is so desirable for the treatment
of breast cancer, what can be done to facilitate its
further development? )(
) Reach agreement on key supportive care
indicators across the spectrum of cancer care;
toward kinder care
TREATMENT
19
CONTINUING CARE
IN CONTEXT
Learning to live with the fear of breast cancer
returning and spreading is one of the main
challenges women face in moving forward and
getting on with life. Women who do experience
recurrence or metastatic breast cancer need to
know their situation is not hopeless. Many women
continue to live on productively with breast
cancer.
Nevertheless, the continuing care needs of women
living with breast cancer are considerably more
complex and the emotional distress more intense.
Follow-up care questions, treatment side effects,
quality of life and preventing recurrence are common
issues. Women living with breast cancer are likely to
need treatment information, symptom management
advice, psycho-social support and palliative care
services. The availability of services within reach
and women’s awareness of their existence seem to
vary depending on a range of factors.
Women with breast cancer need supportive
care services designed to meet the physical,
social, emotional, nutritional, informational,
psychological, spiritual and practical needs
throughout their treatment, but especially during
continuing care. 16 Currently, however, the services
and partnerships required to meet the needs
20
CONTINUING CARE
of women living with breast cancer and their
family members are known to be in short supply.
Programs remain unevenly distributed and, in
many settings, the required interdisciplinary team
does not exist. 16, 17
Across Canada there has been a move to
shift cancer care from hospitals back into the
community. Consequently, the family now shares
more of the burden of care in the home, including
dying at home. Thus the financial status of the
home and the care capacities of family members
can have a significant impact on quality of life for
women living with or dying from breast cancer.
Controlling pain and addressing psychological,
social and spiritual problems constitute the main
agenda of palliative care for patients whose
disease is not responsive to curative treatment. 17
Unfortunately, however, palliative care is unevenly
distributed and commonly not found as a key
program. Health system reviews suggest that a
reasonable allocation of resources to palliative
care has yet to occur. As such, the majority of
patients with advanced breast cancer continue
to die following a period of illness characterized
by the presence of pain, physical disability and
varying degrees of distress.
RESEARCH LITERATURE
Our exploration of the research on women’s
experience of living with breast cancer brought
forward studies of survivorship and continuing
care needs. This research suggests that women’s
experience of continuing care often revolves
around seeking information and support to manage
distress, anxiety and treatment side effects.
It has been shown that women are generally less
satisfied with symptom management in their care
than cancer treatment itself. While physicians
are seen as important sources of information,
many women seek additional help and support
from a range of other sources such as nurses,
pharmacists, media and the Internet. Women
often pursue complementary care services to
help with symptom management, including those
of chiropractors, herbalists, naturopaths and
massage therapists. Indeed, some women need
advice to sort through alternatives in their pursuit
of quality of life. 3, 31, 36-38, 40
Research on those who turn to complementary
and alternative care has shown that users were
younger, more educated, had greater household
incomes, were more likely to have attended a
support group and to have undergone systemic
therapy. Complementary care users were less
likely to believe that standard treatments alone
would either cure their cancer or prevent its
spread. Users often wanted to make decisions on
their own with some physician input; however, a
lack of evidence on the efficacy of complementary
care can be a barrier to such a dialogue. 7, 31
The promise of projects and programs that
empower women to rise above their disease
has been a subject of research on living with
breast cancer. Support groups have been shown
to have a significant impact on pain and anxiety
management, although not on length of survival.
“Dragon boating” has received much attention
from professionals and women living with breast
cancer: for women involved, breast cancer seems
to recede into the background as they become
focused on getting in shape and on the challenge
and fun of paddling. Increasingly, dragon boating
participants report being able to focus on life and
living rather than on disease and the possibility
of death—increasing their sense of “being in the
moment,” of “mindful living” and “aliveness.” 34, 38
toward kinder care
The impact of breast cancer survivorship on the
family and caregivers has been studied. The effects
of anxiety, pain and fatigue can have a significant
impact on women’s roles as mothers and wives.
Children often need information and emotional
support, which may or may not be available
through school counselling programs. Rural
women have been shown to experience greater
practical and emotional burdens associated with
travel, travel costs and isolation, all of which
may affect both their treatment decisions and
coping strategies. Lower-income women such as
single mothers have been shown to experience
particularly heavy burdens associated with
employment, child care and financial problems.
Having breast cancer can render lower-income
women even poorer. 11, 24, 30, 35, 39, 59
Research on palliative care has shown that
insufficient resources were in place from
1992–1999 to meet the needs of women dying
of breast cancer. Although 70% of women with
breast cancer died in hospital, consultation
with specialists in palliative care was shown to
be rare. A scarcity of palliative care specialists
working in cancer centres and acute care
hospitals continues to impact the delivery of endof-life-care. Family members have been shown to
exonerate professionals from responsibility for
such conditions in the belief that practitioners
were “doing all they could” given the limitations
of health care resources. 33, 44, 60
UP FRONT FINDINGS
Women who participated in our study expressed
feelings that the breast cancer service and
continuum tended to emphasize “cure” over “care.”
Their experiences with follow-up or the absence of it
pointed out weaknesses in the cancer care system
for which there appeared to be little recourse.
“After everything is done, it’s not over, right?
It’s never over. Yes you’ve been signed out of
the cancer centre and your treatments are
done, but still there are always questions.”
In the experiences of women who participated
in the study, the care system’s reliance on family
physicians for breast cancer follow-up seemed
fraught with problems.
CONTINUING CARE
21
“The oncologists are too busy to do follow-up
with you so they sign you over to your family
doctor. I had specific questions that I asked
my family doctor and she couldn’t answer them.
So she referred me back to the oncologist.
Trying to get back to the oncologist took weeks.”
In the view of our research subjects, once they
moved into a “palliative” stage, there were few
resources available.
“The sense comes over you that as a cancer
patient you’ve already been written off.
But you need to say I’m still here, I’m still
beating the odds.”
“You’re sort of relegated to the backburner
because, after all, you’re going to die.”
Both participant women and their informal
caregivers described the support of social workers
as accessible, warm, caring and important:
“someone who doesn’t limit support,” “someone
you can tell anything to so you don’t have to burden
your family.”
Women felt their family physicians were “ultimately
responsible” for supportive care, but the reality
was that “once the referral is given, it’s out of their
hands.”
“You need to have specific individuals that
can provide compassion and assistance.
You should pay them whatever they want
and have them trained that way.”
“I wondered who is going to look after me if
I need care. Palliative care is 40 minutes away.”
“And on top of the huge void of her absence,
now there’s nothing. It all comes to a screaming
end. So on top of the void of her gone, there’s
this huge void of any kind of social agency or
anything more.”
POLICY ENVIRONMENT
Cancer specialists recognize the importance of
supportive care and the critical need for palliative
care; however, the absence of trained personnel
and escalating health care costs continue to
frustrate the development of what are considered
to be essential services.
Supportive care is seen as an integral component
of cancer care, crucial for patients and families.
Defined programs and leadership, however, are
considered to be either absent, incomplete or
fragmented in most Canadian cancer centres
and community-based services. The strategy for
improvement is to use well-established existing
programs as models for programs in developmental
stages. 16-17
The range of services and the collaborative
partnerships required to meet the supportive care
needs of cancer patients and their families are
in short supply across Ontario. Services remain
unevenly distributed, and most cancer programs
do not have an appropriate complement of staff
to meet the full range of patient needs. Pockets of
excellence apparently exist and progress has been
made in some settings. Significant improvements
are required to provide appropriate levels of
supportive care throughout Ontario. 23
Since supportive care is so desired “throughout
the continuum,” what can be done to help realize
the dream?
Because women continue to suffer needlessly
through terminal illness, what should be done
to ensure that palliative care is more universally
accessible?
What more should be done to empower women
living with breast cancer to “survive and survive
and survive”? )(
Supportive care and palliative care were pointed out
to be especially difficult to access for rural/remote
residents. Rural providers reported having to source
funding for their patients’ supportive care.
“I think we need to make death kinder
to women.”
22
CONTINUING CARE
NEW PERSPECTIVES
The Up Front study brought a new level of
refinement to the efforts of the Canadian Breast
Cancer Foundation and its partners on behalf of
the women of Ontario. Engaging in a collaborative
research effort truly found the pulse of women’s
experience with breast cancer.
Our survey of Ontario women who have never
had breast cancer revealed that the majority are
concerned and motivated to do what is necessary to
protect their health. Largely, it was suggested that
the lack of clarity on prevention is holding women
back from achieving optimal results. Lower-income,
immigrant and aboriginal women were shown to
have significantly more information needs, but
even so, participation and interest are far from
absent. The survey also showed that screening
participation was greater than expected. Women
told us they would benefit from a letter prompting
them for their next mammography appointment.
Qualitative research with providers, informal
caregivers, women who have been through
treatment and those living with breast cancer
served to demonstrate the health impact of a
fragmented cancer care delivery system. While
toward kinder care
study participants expressed general satisfaction
with the strictly “medical” aspects of their
treatment, there was little satisfaction with the
coordination of their care, communication systems,
the quality of information resources and psychosocial support. The study also demonstrated that
lower-income women and rural residents experience
these burdens more intensely. Those who can
least afford the hidden costs end up with greater
financial burdens from breast cancer treatment.
Reviewing recently published research has only
served to underline and reinforce what the Up
Front project discovered in the Ontario landscape.
Thousands of women with breast cancer continue
to struggle through their experiences with the
cancer care system.
The scan of the policy environment has shown that
cancer care authorities are well aware of problems
with cancer care systems. The developing regional
cancer programs across Ontario offer a welcome
opportunity for reform. Perhaps there has never
been a better time for the proposals and suggestions
of community-based cancer groups.
NEW PERSPECTIVES
23
PARTICIPANT RECOMMENDATIONS
Supportive Care
As part of the research process, we asked
participants for their recommendations about
what could be done to improve cancer care. What
do Ontario women want from cancer care? Mostly,
what we heard from our research participants were
viable solutions that require the organizational will,
creativity and resources to implement.
Support Services
Care Coordination
Education of Students in Medical Fields
Supportive Practice
Women felt that family doctors, surgeons and
oncologists need to be educated about supportive
approaches to practise as well as supportive care
options for women diagnosed with breast cancer.
Participant women suggested that students in
medical fields should study how to navigate cancer
care systems so that they are better able to assist
their patients once they are practising.
Support from “Day One”
Electronic Patient Records
Peer Support
All participants talked about the need for an
electronic database in which providers could access
patient records from any location.
Women stressed that “peer support” should mean
somebody who has been through breast cancer.
Patient Involvement
Women suggested that someone should be assigned
to each woman when diagnosed with breast cancer
to act as navigator or care coordinator.
Support Groups
Women wanted to be able to sit with their team of
doctors in a conference to talk about their cancer
and the pros and cons of treatment options.
Women living with breast cancer strongly suggested
that support groups should be made available for
all women diagnosed with breast cancer as a critical
component of their care.
Continuity
Homecare Support
Women stressed that supportive care services
should extend from diagnosis onward.
Women felt there should be more access to
practical support to take care of their homes and
family responsibilities when they are too ill.
Care Teams
Providers emphasized integrated cancer care
teams working together to determine the patient’s
care plan.
Care Path
Providers suggested a standardized clinical care
path for breast cancer extending from screening
onward.
Patient Navigator
All informants believed that coordination, continuity
and supportive care would be strengthened by the
existence of a patient navigator role.
Partnerships
Providers emphasized that strong partnerships
between care and treatment providers across the
health system would be required to realize an
integrated breast cancer care system.
24
Women talked about feeling isolated as they were
moved from one health professional to another
with little consultation.
NEW PERSPECTIVES
Workplace Support
Women with breast cancer described a need for
support in the workplace to ease their return after
treatment.
Support for Caregivers
Women felt that there should be support groups
for informal caregivers to allow them to dialogue
with others going through the same thing.
Information Needs
Timeliness
Women said they found it impossible to take in
information or make decisions at the time of their
diagnosis. They need to be introduced to someone
supportive who can provide information they can
later discuss.
Personal Contact
Health Care Professionals
Women felt that they needed personal contact,
not just a pamphlet, at the time of their diagnosis.
Family Doctor
Targeted Material
Information packages should be tailored to cultural
and language groups.
Treatment Options
Participant women told us they needed clearer
treatment options depending on the type and stage
of breast cancer.
Clinical Communication
Spending Time with the Patient
Women recognized that oncologists and surgeons
are very busy, but felt that patients often need
more than a 20-minute appointment to sort out
their treatment.
Sensitivity Training
Providers offered suggestions about how to
strengthen the role of general practitioners and
processes for informing them about what is
happening to their patient at every step along the
care process.
Communication Technology
Providers found Tele-health and North Network
to be important ways to facilitate continuing
education, coordination and communication among
health care “teams,” which may be spread across
different locations.
Continuing Education
Women felt there needs to be professional
development opportunities where cancer specialists
can receive updates on new developments,
medications, communication skills and “how to talk
to people who are dying.” )(
Participant women talked about the need for
education among health professionals on how to
talk to patients.
Rural And Remote Residents
Building Locally
Building up local resource people to assist with
information and support was described as a critical
element of providing care and treatment in isolated
communities.
Increasing Services
Women and caregivers in remote areas emphasized
their need for locally accessible services.
toward kinder care
NEW PERSPECTIVES
25
PROCESS
Once the research findings had been compiled
and synthesized, the project undertook a
consultative initiative to share the results with
select communities across Ontario. Women with
breast cancer experience and their caregivers
were invited to compare our research findings
with their own experiences, provide feedback on
their relevance and contribute further suggestions
toward improving the system of care. Health care
and social service providers were also invited,
separately, to consider our research findings from
their professional perspectives.
Foundation volunteers and staff succeeded in
hosting eight discussion forums bringing together
163 individuals in all. Consultations embracing a
mix of 137 former patients and their caregivers
were held in Ottawa, London, Toronto, Etobicoke,
Scarborough, Sudbury, Sault Ste. Marie and
Timmins. A separate series of discussions involving
a total of 26 professional providers was held in
Ottawa, Toronto and Sudbury.
These meetings offered a structured format for a
public discussion of breast cancer treatment and
care experience. Participants were invited to share
their own experiences and to recommend how the
26
breast cancer care system could be strengthened.
The format probed participant experiences with
prevention, screening, diagnosis, treatment and all
phases of continuing care. Systematic procedures
were used to document and interpret what
participants had to say. These are described in detail
in the methodology section of this report.
RESULTS
Former patients and caregivers who attended the
consultations represented a range of experiences
with breast cancer, including women who were
recently diagnosed, still in treatment and several
years post-treatment. The content and tone of the
discussions were remarkably consistent whether
in northern or southern, rural or urban Ontario.
Inviting women’s reflections on their experiences in
breast cancer care, so we learned, seemed to touch
a collective nerve. The resulting commentary tended
to be dominated by experiences of “disconnect”—
shock, distress, excessive anxiety, apprehension,
vulnerability and isolation—associated with events
occurring in women’s treatment.
In general, the consultations not only corroborated
our research findings, but also contributed additional
and equally poignant material. It was apparent to all
who attended that women from across the province
are significantly challenged by the current system
of breast cancer care in Ontario. Participants were
neither angry nor militant about their experiences
in care, but clearly wanted to see things improve
by offering their personal recommendations. The
main message—sometimes heavily underlined on
feedback forms—was that having breast cancer is
stressful in its own right, but that the health care
system makes it even more so.
the inconsistencies that most other former
patients cited. Interestingly, a small proportion of
participants in the consultation had encountered
optimal breast cancer care. Their outlook on the
health system, its providers and their own lives
stood out sharply against the experiences of
other participants. What could make treatment
for breast cancer a “wonderful” experience? The
main ingredients seemed to be what most other
participants wished for: “informed” participation,
“emotional support” and “timeliness.”
Community participants generally confirmed the
needs identified by our qualitative research with
their own experiences, but they also helped to
point out more clearly how stressful being treated
for breast cancer can be. They described how
stress accumulates from health-system problems
and disturbances over the course of treatment, as
confusion and disorientation build in the absence
of coordinated breast cancer care in hospital
settings, poor service synchronization and lack
of teamwork among providers. From experiencing
booking errors to finding themselves “go betweens”
among professionals, participants described how
stress mounts up in having to coordinate, manage
and navigate one’s own care, each step of the way,
without much direction or emotional support. The
general perception shared by a large majority was
that the health care system is “like an assembly
line,” whose providers seem “burnt out” or simply
“don’t interact.”
The dominant theme of the community
consultation was the experiences encountered
in care that produced feelings of shock, distress,
excessive anxiety, apprehension, perceived
vulnerability and isolation:
Professional providers noted similar concerns,
although some were surprised by the extent
of “negative experience” described by former
patients. A registered nurse reflected that she had
previously assumed breast cancer care was easier
to navigate. Providers noted various stresses
and resource pressures in the health system that
impact optimal care. However, most agreed that
the current system of breast cancer treatment
lacks sensitivity to what patients are experiencing
and needs more attention to their support. These
providers expressed frustration with primary care
capacities, the shortage of family doctors and the
weaknesses in breast cancer knowledge among
those in practice.
By contrast, a small minority of community
participants reported experiences of “excellence”
in their care, “fabulous providers” and “no
problems,” all of which seemed to underline
toward kinder care
) communication/coordination breakdown
) diagnosis shock
) information overload
) unaided navigation
) provider knowledge gaps
) under-recognized inequities
Communication/Coordination Breakdown
“My results were in for 10 days and no one
signed off. It took three weeks and three
cancelled appointments. That was the
most stress.”
“Once the diagnosis is over you have
to do the work.”
“They found a second cancer that would
have been found far earlier if they had been
talking to each other.”
“My doctor went on holidays when I started
radio. I was burned [out] and there was no
one to talk to.”
“During treatment I had cramps and asked
my oncologist what to do. He said go see
your GP. I said, ‘but he didn’t prescribe it
[the treatment] to me, you did.’ ”
As we found in qualitative research, communication
linkages among providers were generally perceived
by consultation participants to be weak and
problematic. Professionals “not being in touch with
27
each other” was commonly viewed as an apparent
flaw in the care system that not only increased
patients’ anxiety, but also seemed to be create
communication errors that further compounded
apprehension. Community participants described
their experience with the “system” of breast cancer
care as “disjointed,” “lacking continuity” and
“riddled with gaps.”
In general, these former patients expressed
the view that “no one is coordinating breast
cancer care in treatment centres.” Overall, their
experience was one of “appointments with
different people who give different messages,”
with little perceived continuity and sometimes
looming inconsistencies.
Concerning wait times, consultation participants
described the anticipation of next appointments
and lab results as “the worst.” “Waiting is hard.”
Yet, what made “the worst” even harder for
some was when their excessive waits turned out
to have arisen from simple booking errors and
miscommunication among providers.
Diagnosis Shock
“Getting the cancer diagnosis and your
name in one sentence is a shock.”
“I got the cold facts and it took five minutes.”
“He handed me a form and said, ‘Well, it’s
malignant. You need surgery, sign this.’ ”
“The way she looked at me was as if I was
going to die, like it was a death sentence.”
Information Overload
“I didn’t know anything. I was only 30.”
“Every time you ask a question, it’s like
you’re not supposed to.”
“I got a pile of stuff. I was in shock. It’s
a lot of information. I didn’t realize about
important info until three weeks later when
it was too late.”
“I worked in oncology, and I was terrified.
I didn’t want to read anything.”
“During chemo, you get so much information
and different drugs, you’re overwhelmed...
You don’t know which questions to ask.”
“The resident oncologist walked in, said,
‘Well, the news is bad – you will probably
be unconscious in two days and dead in
three’ and walked out.”
“You have no questions, the doctors are
so busy, so I asked if I could have another
appointment and the nurses said ‘no.’”
“You can’t think or function, you’re dumb
and numb.”
“It felt like you weren’t really well listened to.
Primary nurses in my mind should have been
doing that, but they didn’t.”
“It was only after three months posttreatment that I realized, ‘I can think now.’ ”
“I find that unless a social worker has picked
up on it, it [shock] just goes unnoticed.”
“They treat the disease and not the woman.”
28
As with our research participants, the emotional
shock on the delivery of a breast cancer
diagnosis was a general theme for consultation
participants. Diagnosis distress was commonly
reported as an unacknowledged issue affecting
the whole course of breast cancer treatment and
subsequent recovery. While care of the “physical
body” during breast cancer treatment was
perceived as satisfactory, the care of the “whole
person” was generally perceived as “sorely
lacking,” “impersonal,” “lacking empathy,” “like
an assembly line” and at worst “inhumane.” A
few participants reported that their encounter
with breast cancer care took years to get over
and left some wondering whether they had
suffered from untreated “post-traumatic stress
syndrome.”
“After it was decided I needed chemo, no
one helped me or explained anything – I had
to do all my own research on the Internet.”
“Nobody tells you what to expect.”
“As a non-medical person it’s very scary
to make such decisions – we don’t have the
necessary medical background to make such
decisions on our own!”
Like our research subjects, consultation
participants felt that access to reliable information
was critical, but often found their receptivity to
it diminished by the emotional turmoil of their
diagnosis. Feeling “numb and dumb,” “mind
boggled,” or “like Bambi in the headlights,”
patients described being unable to absorb details
required to participate meaningfully in decisions
about their care. With little support to interpret
complex health issues —“I was told I read too
much!” — consultation participants reported feeling
“overloaded” and hustled through decisions they
did not understand.
Written information often only led to more
questions and no one seemed to be available to
answer them. “I didn’t know,” “no one told me”
and “I had to find out on my own” were common
statements about the experience. On the other
hand, participants also reported feeling that their
providers had withheld crucial information about
important issues such as “treatment side effects,”
“access to supportive care,” and the availability
of services such as “reconstructive surgery with
mastectomy.”
Unaided Navigation
“My oncologist later gave me three choices of
medication. How could I choose what to do?”
“When my doctor saw the results from my
mammogram he said he didn’t see anything
and asked me if I could see anything myself.”
As also reported by our research subjects,
participants in the community consultations
commonly found themselves obliged to insert
themselves into the management of their own
course of treatment, usually in a state of distress
over the uncertainties they were experiencing
at the time. Participants reported feeling angry
and resentful rather than empowered by this
experience: “What is the role of the doctor if
they aren’t the experts?” From acting as “go
betweens” among specialists to pushing for
“timely” appointments, participants reported
feeling forced to become “proactive,” “aggressive”
and “pushy” to make their way through treatment.
Some participants reflected that in hindsight they
regretted their passive “compliance” or placing
“so much trust in their [providers’] hands.”
When hearing accounts of these experiences
provider consultation participants expressed
surprise, which points to an apparent conflict
between professional assumptions about breast
cancer care and the realities of patient experience.
Provider Knowledge Gaps
“Unless you ask questions, you don’t know
what you have to do next.”
“I had a green discharge from [my] nipples
and my doctor said ‘stop drinking coffee.’ ”
“If people don’t know what to ask for,
it doesn’t come.”
“My doctor wouldn’t give me a mammogram
because he couldn’t believe that my lump
was breast cancer.”
“People must be their own advocate. I caught
several mistakes.”
“They [providers] think you are participating.”
“I asked my doctor for a mammogram.
He said ‘No, you’re only 45.’”
“If I knew then what I know now, I would
have been on her case.”
“I had inflammatory breast cancer, but the
doctor wasn’t on board ’cause he thought
I was too young.”
“Unless I had done the research myself, talked
to a whole bunch of people, made it my
business to know, I would not be here today.”
“I had bad reactions to the adhesives,
skin broke down, the home care people
didn’t know how to treat it.”
“When you’re sick, you’re not feeling well,
you don’t always have the strength to fight.”
“We didn’t know she had metastatic disease
until ten days before she died.”
toward kinder care
29
“The GPs know absolutely nothing about
breast cancer.”
“I had to get rid of my doctor for my mental
health.”
“At the end of treatment, you wonder if there
are standards for care.”
As with our research subjects, community
participants often expressed disappointment with
the breast cancer knowledge of their primary
providers. Several participants related stories
of having to convince a family doctor to further
investigate lumps or other symptoms they
had found themselves. There were accounts of
delayed diagnoses due to what were perceived as
“inexperienced” or “misguided” providers. Some
participants reported losing all confidence in their
general practitioner and subsequently having
to search for another family physician under
conditions of doctor shortages.
As with our research subjects, community
participants wondered if there are standards
of care for breast cancer treatment in Ontario
or whether those in existence are actually being
applied. Inconsistencies in treatment plans,
practitioner approaches, hospital programs, and the
competence of family physicians were perceived to
be indicative that standards of breast cancer care
are either absent, unregulated or compromised.
Under-recognized Inequities
As with our research subjects, consultation
participants pointed out significant sources
of distress that often depended on individual
circumstance, but nevertheless seem poorly
anticipated by the breast cancer care system:
financial burdens, distance from care, and age and
gender bias.
Financial Burdens
“Women are coming in who can’t afford
treatment because they can’t afford the drugs.”
“I had not enough money or benefits and
went bankrupt.”
“Financial stresses are overwhelming,
which doesn’t promote healing.”
“The biggest issues for single women
in jobs with no benefits were financial.”
30
The unanticipated expense of breast cancer
treatment—medication, nutrition supplements,
wigs, prostheses, transportation, parking,
house cleaning, child care and so on—was
a hot topic in consultation discussions.
Community
participants,
reflecting
their
common experiences, noted that all women
encounter unanticipated financial burdens
during treatment: “No one seems to know you
will have to pay for the medications.” But they
also recognized that costs are often greater for
young mothers as well as for rural, northern
and aboriginal women due to child care support
and travel costs. Participants noted that while
financial assistance was sometimes available, it
was another “information” item that was either
poorly communicated or never mentioned.
Distance from Care
“She’s driving in a snowstorm in January
to get to her radiation, she has to coordinate
child care, she’s alone.”
“After my surgery I was loaded up in a truck
and taken home. My husband had no clue how
to take care of me. I was still pretty out of it.”
“There was a power outage on the day I saw
my doctor and he said, ‘I think it’s negative.’
And then it was months before I saw him
again, and [in fact] I had breast cancer.”
“I had to go to Toronto to find out if it
was a recurrence – you’re on your own.”
“We don’t get the same treatment as in the south.
If we need treatment we have to pay but in
Toronto they have all their costs covered [sic].”
As with our research subjects, consultation
participants raised concerns about the quality of
care in the north due to the shortage of family
physicians, distance to treatment centres and
the scarcity of home-care services. Northern
community
participants
perceived,
often
misguidedly, that breast cancer care is inferior in
the north. Their experiences with rural isolation,
out-of-pocket expenses, treatment delays and
lack of local services only served to underline
their feelings that optimal care is compromised in
northern communities.
Age and Gender Bias
“Younger women can’t even get recognition
that they suspect a problem.”
“The laissez-faire attitude toward women
and breast cancer is sad.”
“All the oncologists I saw were men and they
often dismissed my concerns. But how do
they know what I know, what I feel?”
Simply being a woman was recognized by some
consultation participants as a vulnerability in
a health care system that can be “patriarchal,”
“hierarchical” and “dismissive.” Some former
patients felt “intimidated” or “not listened to” by
male providers. Younger women spoke of struggles
with getting their susceptibility to breast cancer
recognized by their primary providers. Those in
their 30s and 40s described having to fight to
have their symptoms acknowledged and tests
ordered by family doctors whose inclinations were
to “wait and see.”
IMPROVING BREAST CANCER CARE
Given the preponderance of difficult experiences with
the health care system, many participants in the
consultations reported that they had felt reluctant
to attend, not wishing to dredge up troubling
memories and emotions. Nevertheless, once
there and talking, they were eager to contribute
ideas about how to make breast cancer care more
supportive for women. It was clear that there was a
deep desire to participate in helping to improve the
system and to champion such developments.
Prevention
“No doctor even wants to tell you how to
prevent breast cancer because they don’t know.”
“Everyone is ‘finding the cure’ not prevention.”
“Messaging around preventing cancer is more
likely to reduce the risk of heart disease.”
“We need to know all the things that may
cause breast cancer, from healthy choices
to what’s in our environment.”
“Sex education in high school should include
breast health.”
toward kinder care
Participants commonly argued that breast cancer
prevention needs to be re-invented to clarify known
causes and risk-reduction practices. They sent a
strong message that there must be an end to the
subtle “victim blaming” of current approaches,
which tend to emphasize individual risk factors
without reference to potential environmental
risks: “Statistically I should not have breast
cancer.” Participants who had had breast cancer
often focused on environmental over personal
links, sometimes expressing frustration with the
apparent failure of their own earnest lifestyle
efforts to prevent cancer.
In contrast, providers focused more on expanding
efforts for behavioural and lifestyle change
around smoking, diet and exercise. The link
between both perspectives was a common call for
further research into the cause of breast cancer
in order to eventually improve prevention and riskreduction strategies.
Screening
“Reduce the age for mammograms.”
“The earlier the better for screening.”
“Mammograms are just one component.”
“When the message came out that women
should not do BSE, I think it was the most
irrational message that could have gone out.”
“We need to develop better technology to deal
with the shortcomings of mammography.”
“When young women go for birth control
pills they should receive BSE education and
symptom awareness.”
“Consider self-referral of women under 30
with breast lumps—at pregnancy clinics.”
Community participants expressed a common
feeling that breast screening programs should
begin at an earlier age than 50 and that breast
self-examination (BSE) should be taught early in
school programs. These views arose especially
in discussions about the experiences of younger
women having their symptoms dismissed or
misunderstood by health care providers, leading to
subsequent delays with diagnosis and treatment.
Most participants strongly endorsed BSE in spite
31
of research and subsequent media attention
indicating it has little effect on outcomes.
Women who had found their own cancer, or whose
confidence in mammography had been shattered
by false results, or who had been ignored by
practitioners, strongly emphasized women’s
continuing need to know their own bodies through
BSE. In contrast, providers emphasized the need
to improve mammography participation through
mass marketing campaigns that could be modified
to address cultural and language barriers.
Supportive Care
“I have a wonderful GP. He helped me.
He said, ‘It’s nothing you did or didn’t do.’
I think everyone should be told this.”
“I was fortunate – met a surgeon who had
a psych degree.”
“I was lucky because a volunteer was available
to talk to. I was freaking out.”
“You should be assigned a social worker right
after diagnosis.”
“Instead of being handed 8 or 10 different
pamphlets when diagnosed, someone should
sit with the woman, answer questions,
go over choices.”
Most participants expressed the need for emotional
support in the form of a “person” throughout
the care trajectory, from the delivery of a breast
cancer diagnosis onward. Women who had been
through it reflected on the emotion and trauma of
a breast cancer diagnosis and strongly emphasized
the need for support to cope with the shock and to
prepare for difficult decision making.
The underlying desire, however, went far beyond
wanting someone in a “provider role” to a more
“supportive system” that would include empathetic
personnel, access to reliable information and
consistent quality of care throughout the process.
Participants’ recommended elements of a postdiagnosis support program included education
on “what will happen next”; the opportunity to
ask questions; help navigating the care system;
assistance with making difficult decisions; and
32
access to people who had “been through it” to
learn from their experience.
Care Navigator
“The nurse met with me and gave me a binder
and went through everything. I would have
forgotten everything if not for the binder.”
“Someone needs to tell you what to do next.
This is what is missing.”
“Helping women understand the pathway.”
“If in those initial 48 hours, you have the
ability to get information from a knowledgeable
professional and have time to get your head
around it, that would be an incredible asset.”
“Unless you ask questions, you don’t know
what you have to do next.”
“Health professionals are helpful but are also
the enemy – need an advocate or ‘go between’
because there is a huge level of suspicion
about the medical system.”
“I would sensitize the managers, telling them over
and over the benefits of helping patients learn.”
The wish for the ongoing support of someone
to guide a patient through the whole course
of treatment, answer questions and provide
compassionate care was universal. Community
participants argued for the “ongoing involvement”
of a “care navigator,” a “buddy,” a “coach,” an
“advocate” or a “mentor.”
They described the navigator role as coordinating
care, advocating for the patient, and providing
information, direction and emotional support,
adapted to individual needs. Not only did women
want chart information to be transferred more
efficiently between practitioners and facilities,
but they wanted access to it themselves. They
recognized treatment as a staged process and
their need to know “what’s happening next” as
having a significant impact on their levels of
anxiety and stress.
Provider Education
“Not enough opportunity to reflect on findings
and how to apply them to your own work.”
“We are beginning to bring disciplines together,
but we’re not used to working this way.”
“When you work for an institution it’s often
hard to stand alone because you’re caught
between budgets and bottom lines.”
Professional participants pondered their own
difficult experiences with the breast cancer care
system and desire for its improvement, sometimes
echoing the concerns of former patients. They also
related the formidable challenges of keeping up
with research, translating findings into practice and
dealing with a health care system set up in isolated
silos. Nevertheless, they saw continuing education
as a crucial strategy for improved care.
Community participants felt strongly that there is
a widespread need to enhance the breast cancer
knowledge of all relevant providers and especially
general practitioners. They described an urgent
need for improved education on breast cancer
symptoms, patient navigation and access to
community support systems.
Survivor Volunteers
“Women need to support women.”
“An advocate doesn’t need a whole lot of
knowledge. It’s basic. I could do it now.”
“Right from the moment you know
you should get a buddy.”
Participants felt that breast cancer survivors could
make a valuable contribution to more supportive
breast care by acting as “buddies” during treatment
and “educators” in schools and social service
environments.
Research Investment
“I would dearly love to see the [Canadian
Breast Cancer] Foundation put more money
into primary prevention, finding the cause.”
Participants commonly expressed frustration with
the current state of knowledge about the cause of
breast cancer and the consequent weakness of risk
reduction and prevention strategies. Research into
the cause of breast cancer was widely perceived to
be a worthwhile investment.
Health Care Policy
“In the end, there are big systemic issues
that need to be addressed, and the biggest
is resources.”
“There is a disconnect between the experience
of women and how government is reacting.
We can look at our administrators in our
hospitals, but it goes beyond that. The MOH
[Ministry of Health] needs to recognize there
is a problem here, and women want and
deserve better.”
Former patients felt that stronger government
involvement is needed in setting and maintaining
standards of care that can compete with the best
available anywhere. Many felt Ontario should be
setting the example for everywhere else.
DISCUSSION
Overall, the community consultation helped not
only to corroborate much of what we learned
about women’s experience in care from the
research phase of the project, but also to point
out the impact on individuals. Many women,
possibly the majority, experience emotional
distress, uncertainty and isolation in various
encounters with the health care system while
being treated for breast cancer. The scarcity
of relevant community programs, disruptions
in communication, poorly delivered diagnoses,
unnecessary delays, unaided navigation, and other
system gaps all seem to aggravate the emotional
turmoil of having breast cancer itself. Excessive
stress is quite apparently a significant side effect
of breast cancer treatment in many care settings.
The effect that treatment stress may be having
on recovery from breast cancer, psycho-social
readjustment or other health outcomes should
be a topic of further investigation. )(
“We must spend more research money and
social energy on breast cancer prevention.”
toward kinder care
33
ACTIVATING UP FRONT:
REPORT RECOMMENDATIONS
DISCUSSION
Much of the evidence on women’s experience of
breast cancer treatment uncovered by the Up Front
project appears to be critical of the care system,
especially on key points about coordination,
emotional support, information, communication
and education. Even so, the project found that
very few women approached their participation
in interviews and focus groups with anger or
condemnation. In many cases, former patients
were reluctant to express their views because their
reflections often raised “difficult emotions.” Once
talking in groups, however, research participants
usually found that their private, thorny experiences
were not isolated, but more or less common.
Wherever the project went, the views that former
patients expressed—whether in focus groups
or community forums—had a high degree of
concurrence. Only a small minority reported that
their treatment experiences had lived up to their
expectations. The majority of participants in the
community consultations thought of these women
as “lucky.” Women who were not part of the
research process but served the project in various
ways also concurred that their experiences were
being voiced in Up Front research.
It should be kept in mind that most of the material
on the care system came from qualitative data
generated by former patients’ reflections and not
34
ACTIVATING UP FRONT
“satisfaction measures.” Because “improvements
to the care system” were solicited in the research
process, the resulting data tends to focus on
deficiencies and gaps. Nevertheless, research
participants commonly expressed their support
of Canada’s public health system and sometimes
named specific providers who “stuck out” for their
compassion, support and even humour.
Overall, it seems that these findings are not
entirely different from patient satisfaction
measures collected by Cancer Care Ontario’s
Cancer System Quality Index. The index reports
the results of more than 5,000 Ontario patients
who responded to a mail survey subsequent to
receiving care at participating cancer centres or
hospitals in 2004 and 2005. 19
On the surface, general satisfaction based on
median “overall impressions” scores appears to
be in the 85–92% range, where 100% represents
complete satisfaction. Women were somewhat
less satisfied overall than men. Median scores
on “emotional support,” however, average much
lower in the 50–58% range, and “coordination–
continuity of care” averages 61–71%. Obviously
there is room for improvement suggested by both
qualitative evidence and satisfaction measures.
As with the qualitative findings, some regional
differences emerge, but they appear to be small.
One seemingly large difference between Up
Front research findings and recent scientific
research concerns general practitioners. While
there were exceptions, Up Front research
respondents generally expressed disappointment
with their family doctors’ helpfulness concerning
breast cancer symptoms, system navigation and
follow-up care. In stark contrast, a study released
in 2006 involving 968 Ontario women with earlystage breast cancer suggested that women get
excellent breast cancer care from their family
physicians.44 The difference between what the
former patients interviewed by Up Front have
said and what the 2006 study reported can be
found in the measures. The study considered only
“serious clinical events” and “death” as measures
of adverse patient experience. While women may
feel somewhat comforted by such results, they
bear little resemblance to the confidence women
say they have in their family practitioners.
RECOMMENDATIONS
The Up Front project undertook a multi-year research
inquiry to describe women’s experiences with breast
cancer, aiming to inform future collaborative efforts
to improve Ontario’s cancer care system. The study
revealed that many women experience significant
daily life challenges and treatment-related distress
over the course of breast cancer care. The insights
and advice of study participants strongly suggest
that enhanced care services could benefit many
breast cancer patients. Further research is warranted
to investigate the potential health outcomes and
psycho-social benefits of enhanced programs,
practices and services.
The following recommendations respond directly to
service challenges identified by the participants of
the Up Front project. While the inquiry’s methodology
served to outline what women find problematic
about cancer care services, further analysis may
be required to identify and evaluate potential
solutions. With an overall aim to reduce the burden
of breast cancer on the health care system and its
patients, these recommendations may serve as
a useful starting point for discussion and action
amongst the following key stakeholders:
toward kinder care
) Up Front project partners:
) Canadian Breast Cancer Foundation - Ontario
Chapter
) Willow Breast Cancer Support Canada
) Canadian Breast Cancer Network
) Ontario Breast Screening Program,
Cancer Care Ontario
) Princess Margaret Hospital Foundation
) Ontario Ministry of Health and Long-Term Care
) Ontario Ministry of Health Promotion
) Cancer Care Ontario
) breast cancer patients and their personal
care providers
) health care providers and their professional
associations
) community breast cancer and cancer
organizations
) health care researchers
Specific recommendations are provided
in the following areas:
1) primary prevention
2) breast health education
3) health care provider education
4) screening/mammography
5) integrated care
6) patient navigation
7) supportive care
8) financial supports
9) wait times
10) post-treatment care
11) advocacy
ACTIVATING UP FRONT
35
1. Primary Prevention
The Canadian Breast Cancer Foundation - Ontario
Chapter should maintain primary prevention as a
priority for research funding. Strategies should be
undertaken to promote the availability of funding
for prevention research and to increase the number
of scientists working on prevention research.
The results of research into the causes and risk factors
associated with breast cancer should be more widely
disseminated to help fill public information gaps.
2. Breast Health Education
Strategies should be implemented to develop and
deliver improved breast health and breast cancer
messages addressing women’s information needs
and misconceptions.
Breast cancer signs and symptoms, risk reduction
and screening mammography should be priorities.
Message strategies should move beyond awareness
to promote improved breast health practices and
informed decision making. Information about breast
health and screening mammography should also be
made available for women younger and older than the
age range recommended for screening in Ontario.
Breast health and breast cancer information should
be tailored to specific age groups to highlight
age-related breast cancer risks and risk reduction
practices. Strategies should include educating health
care providers about breast cancer differences in
younger, middle-aged and older women. Breast
health content should be incorporated into current
health education curriculum in schools.
3. Health Care Provider Education
A strategy should be implemented to increase the
knowledge and capacities of all relevant health care
providers to more effectively respond to patient
needs across the continuum of breast cancer care.
Supportive care practices and knowledge about the
occurrence of breast cancer in younger women
should be a priority. Programs should be implemented
at different stages of provider training, including
relevant post-secondary and continuing education.
Best practice models should be reviewed and applied.
4. Breast Cancer Screening Mammography
To help reduce breast cancer mortality among women
aged 50–69, strategies should be undertaken
to increase screening mammography. Currently
36
ACTIVATING UP FRONT
unscreened and under-screened women should be
made a priority in order to address whatever barriers
they may face in accessing screening services.
Specific attention should be given to women of
aboriginal and other ethno-cultural minorities and
remote geographical communities, as well as to
those lacking primary care physicians.
Policies of the Ministry of Health and Long-term
Care should be introduced to bring all screening
mammography services into the Ontario Breast
Screening Program. All patients should have
the benefit of a comprehensive program that is
rigorously evaluated; targets individual women
for participation and recall; minimizes wait times
between diagnosis and treatment; and provides
navigation through cancer care services for the
newly diagnosed.
The Ministry of Health and Long-term Care should
implement policies to allow women aged 40–49
access to screening mammography in the Ontario
Breast Screening Program. The increasing number
of women in this age group who currently access
mammography services outside the OBSP should
have the same standard of care as women who
screen within the OBSP. Screening mammography
for the 40–49 age cohort would align Ontario’s
policy with most other provinces and territories
in Canada.
5. Integrated Care
A comprehensive model of integrated care1 should
be broadly implemented across the health care
system to alleviate service fragmentation and
enhance the delivery of accessible, coordinated and
efficient breast cancer care. A well-integrated model
of breast cancer care should span prevention, early
detection, diagnosis, treatment, supportive care,
post-treatment care and palliative care. Aiming to
increase patient satisfaction with care services,
the desired model should be flexible enough to
respond to specific regional circumstances while
coordinating local hospitals, health care providers
and related community networks.
The implementation of integrated care should
include the development of benchmarks that reflect
breast cancer patient perspectives and expectations.
Progress should be monitored and evaluated.
Practices should be reviewed to identify the most
effective strategies and technologies for efficient
exchange of relevant cancer care information.
6. Patient Navigation
A patient navigation strategy should be designed and
implemented to facilitate access to care programs
while aiming to improve service coordination and the
perceived continuity of breast cancer treatment.
The resulting strategy should be based upon a review
of existing models, best practices and cost-benefit
analysis. The development process should evaluate
models with a potential to be broadly implemented
across the health care system. Model programs should
be piloted in multiple settings throughout Ontario to
identify and address specific regional issues.
7. Supportive Care
Fully integrated supportive care2 services should
be made available to all breast cancer patients and
their families. Supportive care models should be
further developed and services should be broadly
implemented with monitored standards and
outcome evaluation.
Provider education should be developed to foster
a supportive care ethic in all cancer care services.
Strategies should be developed to facilitate access
to support services available in cancer care and
community settings for patients and their families.
Patients should be informed of supportive care
services early in their trajectory, ensuring access at
the time of their cancer diagnosis.
8. Financial Supports
Since expenses associated with breast cancer
treatment and care affect all women, a strategy
should be undertaken to increase awareness of costs
that are not covered in government health care
programs. Many patients are unaware of additional
expenses associated with cancer care and thus
find themselves ill-prepared to address financial
burdens.
A comprehensive screening process should be widely
implemented to identify patients needing financial
assistance and to connect them to available resources
early in their treatment. Healthcare providers should
be educated to inquire about financial needs and to
make appropriate referrals as necessary. Information
about available financial supports should be provided
when it is of the most use to patients: i.e., after a
treatment plan has been established and prior to
chemotherapy and radiation.
toward kinder care
Further research on the financial burdens associated
with breast cancer care should be undertaken in
areas where knowledge remains limited, including
costs associated with treatment, medication, travel,
and childcare.
Advocacy to address the financial impact of breast
cancer on patients should be undertaken and
encompass policy and practices related to income
security, private insurance plans and governmentfunded financial assistance.
9. Wait times
Continued efforts should be made to further reduce
wait times to ensure that delays in care services
do not add to the burden of disease. Government
should continue to address the barriers that impact
on timely care by continuing to invest in care
facilities, regional cancer centres, new technologies,
equipment, and human resources. Regional
inequities in quality of care and access to services
should be addressed.
10. Post-treatment care
Post-treatment care3 issues should be recognized and
addressed within cancer care services to effectively
respond to breast cancer patient needs. Strategies
should be implemented to improve information and
services for post-treatment care. Health care providers
should be further educated about post-treatment care
needs and how to communicate about issues such as
drug side effects, depression and lymphedema.
11. Advocacy
Partnerships should be developed and supported to
leverage policy and program changes that will lead
to more coordinated, integrated and equitable care,
responsive to the needs of breast cancer patients. )(
1
Integrated care emphasizes the continuity of patient experience
throughout the system of care, aiming to improve equitable access, patient satisfaction, effectiveness and efficiency across all segments of
the population. 42
2
Supportive care is the provision of services to meet the physical,
informational, emotional, psychological, social, spiritual and practical
needs of women diagnosed with breast cancer during the pre-diagnostic, diagnostic, treatment and follow-up care phases, encompassing
issues of survivorship, palliative care and bereavement. 16
3
Post-treatment care is the provision of services to address physical
and psycho-social needs that may arise following the completion of
formal treatment for breast cancer. Post-treatment issues include
physical side effects of treatment, such as lymphedema, or the need
for emotional support while transitioning from active treatment to
monitoring. Such physical and emotional concerns may arise in the
days or weeks immediately following treatment, or later, during the
first year after treatment and beyond. 29
ACTIVATING UP FRONT
37
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Ashbury, F. D., Findlay, H., Reynolds, B., & McKerracher, K. (1998). A Canadian survey of cancer patients’ experiences:
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