Patient Education and Counseling 39 (2000) 191–204

www.elsevier.com / locate / pateducou

Breast cancer patients’ experiences of patient–doctor

communication: a working relationship

a, b c
Carol L. McWilliam *, Judith Belle Brown , Moira Stewart
a
Faculty of Health Sciences, H.S. A., The University of Western Ontario, London, Ontario, Canada N6 A 5 C1
b
Thames Valley Family Practice Research Unit, The University of Western Ontario, Research Park, London, Ontario,
Canada N6 A 5 C1
c
Centre for Studies in Family Medicine, The University of Western Ontario, London, Ontario, Canada N6 A 5 C1

Received 2 June 1998; received in revised form 14 January 1999; accepted 18 March 1999

Abstract

The traumas of diagnosis and treatment for breast cancer are well researched and generally addressed in care. While
women with breast cancer continue to identify the need for better communication with physicians, studies to date have not
investigated how the process of communication between physicians and women with breast cancer actually unfolds. This
phenomenological study therefore explored how women with breast cancer experience patient–physician communication to
gain a greater understanding of effective approaches. Interviews of a purposeful sample of 11 women within 6 months of
initial diagnosis or recurrence of breast cancer were audiotaped, transcribed verbatim and analyzed using inductive
interpretation. Themes and patterns of positive and negative experiences emerged. All experiences began with the woman’s
feeling of vulnerability. In positive experiences, information sharing and relationship building were inextricably linked
components of a working relationship which was at the same time affective, behavioural and instrumental. This experience,
in turn, influenced the woman’s experience of control and mastery of the illness experience, and their experience of learning
to live with breast cancer. Findings illuminate the importance of comprehensively patient-centred, working relationships.
Several specific techniques to enhance effective communication are identified.  2000 Elsevier Science Ireland Ltd. All
rights reserved.

Keywords: Patient–physician communication; Breast cancer care; Therapeutic relationship; Patient participation in cancer care; Patient-
centred care

*Corresponding author. Tel.: 11-519-679-2111, ext. 6555; fax: 11-519-661-3928.

E-mail address: cmcwill@julian.uwo.ca (C.L. McWilliam)

0738-3991 / 00 / $ – see front matter  2000 Elsevier Science Ireland Ltd. All rights reserved.
PII: S0738-3991( 99 )00040-3
192 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
1. Introduction
Confronting treatment for breast cancer is a major
life challenge. Many practical problems accompany
health care for this life-threatening disease, including
issues of treatment choice, communication, psycho-
logical support, continuity of care [1,2] and physi-
cian approaches [3]. At a recent Canadian National
Forum on Breast Cancer, participants identified the
need for better communication of information and
improved patient–physician relationship, particularly
shared decision-making [4], as universal themes.
Recent qualitative research has identified specific
causes of distress characteristically unrecognized by
physicians: women’s reactions to their physicians’
attitudes; referral delays; depression; physical side
effects of treatment; problems with prostheses; and
psychological reaction to the loss of a breast [5].
Several solutions to these problems appear in the
literature. Opportunities to fulfill information needs
[6–9], to express feelings and ask questions [10], and
to assume some control in decision-making [9,11,12]
repeatedly have been documented as important. As
well, counselling has been found to reduce distress
[13]. Quantitative outcomes-based research of the
communication experiences of women with breast
cancer have demonstrated the positive impact of
excellent communication on reduction of anxiety
[6,7], depression [6,7], and emotional distress
[10,11,13]. Substantial literature also supports the
conclusion that patients are empowered by an excel-
lent communication process with health professionals
[19–26].
Yet a plethora of literature has reported the
breadth and depth of continuing concern with this
area [14–17]. Physician behaviours portraying or
facilitating excellent communication have been
found to occur very infrequently [10,12,25]. Positive
patient behaviours apparently have not compensated
for these limitations [10,26]. Despite clear evidence
of the substantial needs for information and support
among women with breast cancer [27,28], these
women continue to report difficulty in understanding
their doctors (49.5%) and in expressing their feelings
to them (46.3%) [10]. Physicians continue to under-
estimate both their problems in communicating and
their patients’ level of distress [29].
Qualitative studies to date have documented as-
pects of the experiences of women with breast
cancer, including the meanings of illness [30,31], the
growth-producing struggle of living with the uncer-
tainty of breast cancer [32] and the key events which
cause distress [5]. Using Lipowski’s [31] theoretical
framework of how individuals cope through their
conceptualization of illness, Luker et al. [30] classi-
fied the meanings which women with breast cancer
assigned to their illness, and found that the vast
majority identified their experience as a challenge
(62%), while fewer described their illness as ‘value’,
‘enemy’, ‘loss’, ‘weakness’, ‘punishment’, ‘relief’,
‘strategy’, and ‘warning’. The generally positive
attitudes of study participants suggest the appro-
priateness of working with these individuals to
overcome their illness.
In a phenomenological investigation of how
women with breast cancer experience the uncertainty
of their illness, Neilson [32] uncovered these
women’s vicissitude of emotions, reliance on suppor-
tive relationships, transitions through learning new
ways of being in the world, reflections on self, and
acceptance of uncertainty as part of life in their
struggle to gain meaning. Findings led this research-
er to emphasize the importance of caring interac-
tions, including discussion of the woman’s personal
experience.
Research by Jones and Greenwood [5] further
illuminates communication needs, identifying causes
of distress (including: worry; fear of recurrence;
physicians’ attitudes; delayed referrals and appoint-
ment times; depression; fatigue; and weakness, as
well as multiple side effects of treatment) often
underestimated by physicians. Yet studies to date
have not specifically examined the experiences of
patient–physician communication, to ascertain if and
how these psychosocial issues are addressed.
While much is known about the communication
problems and needs of women with breast cancer,
their actual experience of the process of patient–
physician communication has not been thoroughly
documented. There is therefore little information to
guide practitioners on how to go about refining their
communication approaches. The purpose of this
research study was to explore in-depth how women
with breast cancer experienced the very sensitive and
 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
real life dimensions of patient–physician communi-
cation in order to obtain a greater understanding of
how effective communication might be achieved.
2. Methods
Consistent with exploratory investigation of
human experience of everyday life, interpretive
phenomenology was used to study the meanings,
motives, intentions, emotions, and feelings ex-
perienced by women with breast cancer with respect
to their communication with all physicians involved
in their care experience regardless of physician role
and / or speciality [33–35].
2.1. Sampling
Initially, through a pamphlet in physicians’ offices,
women with breast cancer were invited to identify
their interest in and comfort with talking about
patient–doctor communication as they had ex-
perienced it in the course of receiving care for breast
cancer. A purposeful sample of 11 patients was
selected from these volunteers. Maximum variation
techniques were used to ensure relevance of findings
[33] to two phases of the breast cancer experience
(within 6 months of the initial diagnosis; and within
6 months of recurrence) and to the experiences of
women of varying ages, socio-economic status, and
sociodemographic backgrounds. Accordingly, study
participants, all Caucasian, ranged in age from 38 to
65 years (x 5 50.1 years). Seven of the women were
married, three were single, and one was divorced.
Four fell within the lower socio-economic category,
three the middle socioeconomic, and four the upper
middle socio-economic category. Eight were urban
residents and three lived in rural areas. Study par-
ticipants had experienced a variety of treatments for
cancer, including lumpectomy (n 5 5), mastectomy
(n 5 6), radiation (n 5 11), and chemotherapy (n 5
8), with six having experienced treatment in conjunc-
tion with their initial diagnosis, and five having
experienced a recurrence of cancer. Breast cancer
patients in the terminal phase of cancer were ex-
cluded to avoid placing extra demands upon them in
the last days of their lives; and to ensure that data
193
related to the experience of living with breast cancer,
rather than the experience of death and dying.
2.2. Data collection
In-depth interviews ranging from 1 h and 15 min
to 3 h in length (x˜ 5 2 h) were conducted by a team
of three experienced female investigators (two nurses
and one social worker) using a semi-structured
interview guide. Each interview explored the breast
cancer patient’s experience of patient–doctor com-
munication, identifying in particular: needs, expecta-
tions, perceived barriers and facilitators related to
effective communication; values and priorities re-
lated to patient–doctor communication; and ex-
periences and insights about information, support,
advocacy needs, and decision-making about treat-
ment choices. Interviews were audio-taped and tran-
scribed verbatim, maintaining anonymity. The inter-
viewers’ extensive field notes provided additional
data [36,37].
2.3. Data analysis
Inductive analysis techniques [33,38] were used
first by individual interviewers, and subsequently by
the team, to identify and describe themes and
patterns. Analysis and interpretation occurred con-
currently with data collection rather than sequential-
ly, extending beyond data collection. Thus, themes
and patterns were not developed in advance and
applied to data in the analysis; rather, the researchers
immersed themselves in the data repeatedly listening
to the audiotapes and simultaneously reading tran-
scripts, identifying and reviewing key concepts until
themes and patterns emerged. Ultimately, the re-
search team crystallized an understanding of how the
experience of patient–physician communication
transpired.
2.4. Authenticity
Credibility was established by: audio-taping and
transcribing all interview data verbatim to ensure
accuracy; systematic individual and team analysis;
member checking at the end of each interview; and
194 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
peer review of coherence, cogency and congruence
with life experience by both an advisory committee
of breast cancer survivors and a group of physicians
caring for women with breast cancer.
3. Findings
Women with breast cancer described both positive
and negative experiences of patient–physician com-
munication. Their individual experiences encompas-
sed encounters with three to eight physicians (x˜ 5
4.45). Six of the 11 women had one to three female
physicians on their medical team (x˜ 5 2). Of the total
of 49 physicians who had cared for these women, 12
were female, and 37 were male. Together, they
represented the disciplines of Family Medicine,
Oncology, Surgery, and Radiology. Relationships
with individual physicians were not emphasized,
rather the participants described their global ex-
perience of communication with physicians through-
out their medical care for breast cancer.
When the experience was perceived to be positive,
the communication constituted a working relation-
ship consistently portrayed by a pattern of four
themes: feeling vulnerable; sharing information and
building a relationship; creating the experience of
control; mastering the experience of illness and
learning to live with breast cancer. Negative com-
munication experiences began similarly with ‘feeling
vulnerable’. However, when ‘sharing information’
and ‘relationship building’ did not transpire positive-
ly, a working relationship did not materialize. In-
stead, physicians provided false reassurance, poorly
timed information, and no hope while the women
reacted with negative perceptions of the physicians,
anger, and non-acceptance of both the physician and
the information he / she provided. Women who de-
scribed negative experiences of communication con-
tinued to feel vulnerable, out of control of their life
and health, and unable to master the experience of
illness and learn to live with cancer. The following
re-constructions of positive and negative patterns
illuminate how patient–physician communication
interacts with the health and life of women with
breast cancer.
3.1. The positive pattern of patient–physician
communication: a working relationship
3.1.1. Feeling vulnerable
All experiences of patient–physician communica-
tion began with an overwhelming feeling of vul-
nerability at the time of initial discovery and diag-
nosis. Women described this vulnerability as follows:
When I got home my husband met me in the
driveway and he was very upset and he said ‘‘The
surgeon booked you and you have to go to the
doctor’’ . . . It was 4:30 and I said ‘‘okay’’. And
I was crying and we were both really scared.
I felt total disbelief. I think I had been one of
those many, many people who believed it would
never happen to them. I felt cursed by it . . . . I
felt that it was an indictment of the way I had
lived my life, that I was to blame . . . . I felt very
alarmed about the possibility of death.
We waited again until the Monday [ for the
results of diagnostic testing] and those were
horrendous days. Those are the worst days be-
cause you think ‘‘I’ll die and I’ll never see
anybody again’’ . . . . You think you are going to
die . . .
3.1.2. Building a relationship and sharing
information
Positive experiences of patient–physician com-
munication began with sensitive responsiveness to
these feelings of vulnerability. This was viewed as
physicians making an effort to build a positive
relationship with the woman, simultaneously convey-
ing just the right type and amount of information
with just the right amount of time and attention to
convey caring and to create an experience of actually
sharing information. Specific physician behaviours
contributed to the development of the relationship.
Spending time and not appearing rushed were im-
portant. As one woman explained:
Time was taken . . . to help predict what the
procedures were going to be like and how I was
going to choose them and in what manner I would
 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
choose them. That kind of ten or fifteen-minute
introduction to the relationship made a massive
difference for me. I wasn’t unclothed. I wasn’t
sitting in some little examining room. I wasn’t
wondering who was going to walk in the door,
how many students were going to be there . . . .
Those two occasions were very important to me.
They set the tone which was easy then for me to
sustain. It was one of mutual respect and sort of
just a bit of a balance in the mutuality of our
working relationship.
The relationship also was enhanced by the physi-
cian’s involvement, respectfulness, caring, honesty,
and attentiveness to patient concerns, all of which
were conveyed through the information-sharing pro-
cess. Other participants said:
I was touched by the fact that she [the physi-
cian] knew how important all this was and that
she bothered to call me personally at home and
tell me. . . . She certainly didn’t have to do that.
She could have waited until our next visit.
He told me what to expect. . . . He took me
seriously. I didn’t feel dismissed or written off.
Women with breast cancer recognized that they
too contributed to the process of relationship build-
ing, which they linked inextricably to the discourse
of sharing information:
As it affected me positively, it could as easily
have affected me negatively if I hadn’t trusted the
relationship and the discourse . . . with my
surgeon and with the radiation oncologist. I
would have been so much more troubled and so
much less able to just surrender to the procedure
once I decided it was the right thing to do.
Often it was necessary to be assertive in order to
have their needs met, particularly when ‘brush-offs’
were anticipated and ‘no answers’ were forthcoming:
. . . I’d say I’m assertive but not necessarily
aggressive. And I think I treat the doctor like a
person first . . . . I give people a lot of leeway,
195
but I don’t take ‘no’ for an answer, and I don’t
take a brush-off for an answer. I think it’s
something I’ve worked on because you know,
we’re talking about my life.
An enormous amount of energy was expended in
simultaneously monitoring one’s care and developing
a relationship with health care providers:
. . . I became quite . . . willing to entertain all
that medical expertise, [to] sift, sort, and [to]
understand and relate to it intelligently. I put a lot
of energy into relating to all these helpers care-
fully and intelligently.
Thus, in positive patient–physician communica-
tion both the physician and the patient played an
active role in building a relationship.
The inextricable link between relationship building
and sharing information was very apparent in
women’s accounts. Participants spoke at length about
their need for information, the physician’s availabili-
ty and willingness to answer questions, and the
physician’s effort at engaging them as patients in the
process of sharing information in an affective, be-
havioral, and instrumental way:
Telling me up front the diagnosis, the prog-
nosis, and the treatment; getting me involved in it,
not saying ‘‘you’re going for’’, without saying ‘‘I
would advise this is the approach we find works;
we feel this would help you.’’ To me, that was one
of the best things they could possibly have done.
And the fact that you had a number to call if you
had any concerns at all.
The physician’s leadership role in creating the
experience of sharing information was key. Physi-
cians who helped to create a positive experience of
patient–physician communication used their sense of
the woman’s needs, developed throughout the re-
lationship-building effort, to gage the extent of
information desired. They also made certain the
woman knew what to expect and guided her in
making informed decisions. The physicians who
achieved positive experiences of information sharing
196 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
drew upon their appreciation of the relationship to
facilitate these aims:
He gave me enough information, but he never
threw information at me that I didn’t want. He
didn’t, I noticed, offer the information on my
pathology. If I’d asked for it he would have given
it to me, but he didn’t sort of toss it at me.
Physicians perceived to be skilled at information
sharing provided guidance, facilitated participation in
the decision-making process and invited the
woman’s initiative in information sharing and in-
formation seeking:
On my first visit he asked me to write down any
questions I had. And then when I came back to
him, he would answer any questions I had. He
told me all he knew on the first visit . . . . Then
over the weekend, he gave me a book to read and
told me what would happen, depending on the
results . . . . He told me to make sure that I wrote
down any questions . . . for him.
Access to information was important at the time of
diagnosis and throughout treatment. Accessibility to
desired information fostered enacted connectedness
in the relationship just as connectedness in the
relationship fostered information sharing:
After I had my first chemotherapy I came down
with a high fever and chill. And when I phoned
the oncologist he returned my calls even though
they were late at night . . . He told me that if it
got any worse to go to emergency . . . . My
chemotherapy was every three weeks and every
time he came in he would always examine me, ask
me how I was doing, . . . ask if I had any
questions.
Participants who had positive experiences also
recognized their role in information sharing and
actively engaged in seeking and using information.
As one noted: ‘‘Sometimes one has to dig a little for
that information’’.
3.1.3. Creating the experience of control
Loss of control of one’s own life and health and a
loss of confidence in the ability to read one’s own
body accompanied the initial diagnosis:
I think that was one of the most devastating
blows—I thought I could read my own body . . .
and my own symptoms and that I was symptom-
free . . . . So when this breast cancer caught me
by surprise I lost my confidence in my ability to
read my own body.
Physicians who provided patients with the oppor-
tunity for choice and participation through their re-
lationship-building / information-sharing efforts help-
ed to create the woman’s experience of feeling in
control of her own life and health:
I felt in some ways I maybe was contributing to
my own care, that he was leaving me to help
myself in that way. And I think sometimes that
helps too, rather than making you appear like an
invalid.
However, participants also realized that they too
had to work at creating their experience of feeling in
control:
Right after the treatment when radiation was
finished it was as if I was trying to take my
healing process back into my own hands. I had
given myself over to the oncologist and the
radiation technologist. It was as if now my work
was going to be beginning, that I was going to
have to become my own doctor now and I was
going to have to decide what would help me to
feel safe, secure and focused and what would help
me to feel like I was helping myself appropriately.
Participants gained a sense of being in control of
their own life and health and moved toward mastery
of their experience of cancer through an active
process which extended over a period of time:
In the last year I’ve learned how . . . to let go
of that team of helpers . . . . I realized that
having so many helpers was building my fear
instead of dispelling it . . . . So . . . I’ve just
 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
begun to see them all less, the naturopath in-
cluded, and I have begun to sort of take my health
into my own hands. That’s been a very interesting
process.
3.1.4. Mastering the experience of illness
Physicians who created hope through their ap-
proach to relating and sharing information, particu-
larly when communicating bad news, contributed an
essential ingredient for mastering the experience of
illness. Their approach recognized the woman’s
unique potential for life and health:
If you are giving somebody even the worst
news, give it to them gently and compassionately;
don’t take all their hope away, because I don’t
care if it’s 99. 99 per cent fatal, you can bet I’m
going to go for that point 0.01. Let people have
something to aim for!
Don’t deny me hope. If you have information to
give me as a statistic, do the half full rather than
the half empty. Give it to me in the positive light.
Because every doctor knows that there are re-
markable cancer patients or patients that have
beaten the statistics time and time and time again.
The whole thing is that statistics are just an
average, just a number. Everybody’s different
. . . . If you can’t help, don’t hurt.
The women also acknowledged their own role in
this process of mastering the experience of illness:
There’s so many aspects of yourself and you
lose a few of them and you try to regain them
. . . . So every day you just try to do a better job
of it . . . .
In summary, participants’ accounts of positive
patient–physician communication identified how the
inextricable linking of relationship building and
information sharing in a working relationship clearly
contributed to creating an experience of regaining
control of one’s own life and health, mastery of the
experience of illness, and ultimately, learning to live
with cancer.
197
3.2. The negative pattern of patient–physician
communication
3.2.1. Feeling vulnerable
For several study participants, initial reassurances
by the physician that they did not have cancer
heightened feelings of vulnerability. A tendency to
ignore symptoms characteristically followed the ini-
tial elation that arose from false reassurance. Hence,
when the diagnosis was finally made, feelings of
self-blame and anger at self intensified the ex-
perience of vulnerability:
He [the surgeon] took me in the office and he
checked me out and that is when he said I had
very fibrous breasts and that I was too young to
have cancer and he gave me a book on checking
your breasts, and I can’t remember if it was on
breast cancer or not. . . . Before I left he patted
me and said, you know, ‘‘don’t worry about it’’
. . . . And I remember leaving and crying when I
left because I thought, ‘‘thank goodness.’’ I was
worried about cancer. . . . As the weeks went by I
felt it getting bigger and I’d say to my husband,
‘‘this seems to be getting bigger,’’ and he’d say,
‘‘the doctor says everything is okay’’ . . . . Then
in March . . . it was starting to hurt and I said,
‘‘There is something wrong with me.’’ I was
afraid every day. I was angry at myself because
usually I’m the type of person that does every-
thing in order. I had been doing breast self-
examination for years. I would go for a mammog-
ram every year. And I was angry at myself for not
going in sooner—for listening to what the
surgeon had said, for not going on my own
thoughts.
3.2.2. Undermining relationship building and
information sharing
A negative reaction to the paternalism inherent in
the well-intended physician’s false reassurance in
‘telling bad news’ undermined the relationship-build-
ing process from the outset:
I’m not a little child, I can handle this. The fear
is not going to make me run and hide. The fear is
maybe going to save my life. But he denied me
that (he said) ‘‘There, there, you’ll be fine. Don’t
198 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
be upset. It’s benign. Don’t worry about the one
that hurts’’.
The fragmented and provider-centred health care
system further precluded individualized care and,
thereby, also contributed to the undermining of the
relationship-building process:
I began to feel like a number or a nameless
person or a cancer patient. I felt like there wasn’t
any recognition of individuality. There was a
protocol that was followed and everyone was
more or less given the same treatment and I just
kind of subjected myself to it. I didn’t feel that I
received very much from it . . . . I felt like, if only
people worked at the cancer centre who them-
selves had had cancer, then the quality of the
conversation would be different. I felt a bit
patronized or condescended to . . . .
Lack of continuity of care further accentuated this
perceived lack of caring:
It was like a breakdown in communication
because I didn’t feel like telling my story to
everybody and it didn’t sound like they were so
interested. It seemed to me that . . . they didn’t
really care about me as a patient.
In keeping with linkages in the positive pattern of
communication, when building the relationship did
not transpire, information sharing was also impeded
as the patient ‘‘didn’t feel like telling [her] story’’, or
like participating in the working relationship:
The cancer doctor just bombarded me with
statistics and he wasn’t friendly and he wasn’t
approachable and he didn’t really act like he was
the expert. It was like the onus really was on me
to make all these decisions, which I don’t think as
a patient you can. I mean, that’s why you are
there. If I could have made the decisions about all
of this I wouldn’t have bothered going.
Providing too much information, or the wrong
kind of information, thwarted information sharing.
Similarly, providing information at the wrong time
also was perceived to be unhelpful:
I just saw his face and I heard the word
‘cancer’ and I don’t remember anything else and
then he went away again. And I think it might
have been better an hour or two later when I was
a little bit more awake . . . . I’m not sure that
coming out of my anaesthetic I was completely
[alert] . . . I just heard the words ‘‘yes, it was
cancer’’ . . . .
Another woman clearly described how both the
process and the content of the physician’s efforts at
providing information precluded the information-
sharing / relationship-building process:
His whole way of handling it was very dim and
grim and I was taking note of that the whole time.
I was thinking, ‘‘Well don’t be so negative. We
don’t know enough at this point for you to be so
negative. Let’s talk about our choices, options,
what’s going on here.’’
Conveying information without hope had a de-
vastating impact. Neither information sharing nor
relationship building transpired:
I just thought to myself, ‘‘No, no! I’m not going
to accept this as the bottom line. He is only one
doctor.’’ . . . I thought it was natural for people
to feel real scared by the whole situation, but as a
professional, as a surgeon, I thought he should
have been trained better to deal with this kind of
thing and [that he should have] understood that
until you know what is really happening you don’t
put all these seeds of worry in a person’s mind
without giving them any kind of hope or encour-
agement on the other side. And he didn’t.
When information sharing did not proceed well,
patients appeared less proactive in meeting their
information needs and described feeling lonely and
unsupported, as the relationship-building process
also was stalled:
. . . What hindered me was the fact that I had
to look up all the information on my own, that
there wasn’t a resource there for me. He didn’t
give me a book and say this explains everything
going on. I had to find out the information related
 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
to the therapy and everything myself . . . . There
was never talk of maybe you should see a social
worker or maybe you should go here and you will
get more information.
3.2.3. Creating the experience of control
When the relationship-building / information-shar-
ing process did not unfold positively, the experience
of feeling in control of one’s life and health was
undermined. One participant described her frustra-
tion, saying ‘‘None of them ever asked me how I
was doing or what I was doing that I thought might
be helping me.’’ Patients reported turning to alter-
native / complementary therapies in an effort to create
some semblance of control over their own destiny.
Sometimes physicians’ lack of recognition or dismis-
sal of alternative / complementary therapies under-
mined the women’s attempts at creating control over
their life situation. As two participants explained:
I really get upset about that [doctor not ap-
proving of her pursuit of alternative therapies]
because I know they’ve helped me. I know it’s
made a difference for me and I know it’s made a
difference in other people.
My own doctor, when I mentioned vitamins, she
said, ‘‘Oh, use anything on the market. They’re
all the same’’. She knows nothing, and didn’t care
anything about preventative measures, nutrition,
and certainly not homeopathy or . . . alternative
medicines or practices for massage or anything
that could help you. Nothing.
3.2.4. Mastering the experience of illness
Patient–physician communication that unfolded
negatively did not contribute to mastering the ex-
perience of illness as a part of one’s whole life:
. . . I still would like to have felt more invited
to address my own health care from a more
holistic point of view. How are you feeling, how is
your life, what are the stresses in your life, how
are your children, how is your marriage? I would
love to have a medical doctor even invite me to
question whether all those aspects of my life are
being attended to. Certainly they are not in
charge of all of them but to see that my body is a
199
response and is part of a seamless web with my
whole life . . . . That would be a wonderful thing
and that was not part of my experience.
Physicians’ failure to recognize issues of body
image and sexuality resulted in a diminished capacity
for ultimately learning to live with cancer as part of
one’s larger experience of life:
. . . I chose lumpectomy. He explained that
some older women who maybe . . . don’t have as
active a sex life any more or whatever, maybe
they are to a point where it doesn’t matter to them
so much whether they lose their breast or not.
Meanwhile, I’m thinking, ‘‘It’s part of your
body.’’
Failure to acknowledge the impact of the diagnosis
and treatment on the patient’s larger experience of
family life also undermined mastery of the ex-
perience of illness:
I guess I also needed someone who could take
into account . . . the impact on my husband, who
was probably more of a patient than I was for
much of the experience, and the impact on my
children. I didn’t hold my doctors responsible for
that, of course. I know there’s a limit to what they
could do. But I felt like my whole family had
become patients of the cancer industry and that
perhaps there may have been ways that my
children and my family may have been better
served.
Ultimately, learning to live with cancer did not
transpire. Instead, a sense of vulnerability remained.
As one woman testified:
Cancer is a very lonely time. It doesn’t matter
if very many friends come in, you are the one
who is fighting it. It really is a lonely time . . . .
You are still just wondering if they’ve got it all.
Fig. 1 presents an overview of the process of
patient–physician communication as described by
study participants. The communication process un-
folded from the initial experience of vulnerability,
and, when it transpired positively, was comprised of
200 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204

Fig. 1. Breast cancer patients’ experience of patient–doctor communication.

a working relationship containing an inextricably
linked effort at sharing information and building the
relationship. Success in these intertwined elements of
patient–physician communication was essential to
creating the woman’s experience of feeling in control
of her own life and health, and this feeling of
control, in turn, was central to mastering the ex-
perience of illness and learning to live with cancer.
When this working relationship did not contain these
intertwined elements, the patient gained no sense of
control, and continued to feel vulnerable. Ultimately,
her learning to live with what was perceived as a
life-time diagnosis was undermined.
4. Discussion
While interpretative research does not aim to
achieve generalizable findings, the understanding
derived from such studies may have applicability for
others confronting similar situations. The real-life
experiences described in this study illuminate many
 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
of the challenges of patient–physician communica-
tion related to breast cancer care: the range of
emotions women experience when diagnosed; the
pitfalls associated with communicating bad news;
and the delicate art of providing hope, realistic
reassurance, and information that is timely, appro-
priate, and adapted to very individualized needs.
These important issues have been the subject of other
work [2,3,5,7,9,10,12,14,18,39–41], however their
persistence suggests that there is still room for
refining the content and art of patient education and
counselling of women with breast cancer. While
recognition of such challenges presents little difficul-
ty, overcoming them takes concerted experiential
learning and understanding of the patient’s ex-
perience of the practitioner’s well-intended efforts.
The new and perhaps more important understand-
ing gained from this study is the illumination of
patient–physician communication during treatment
of breast cancer as a working relationship. The
synergistic interaction between information sharing
and relationship building constitutes an intervention
that is much more than the sum of its parts. While
many practitioners have mastered the skills of pro-
viding information, hope, reassurance, and support,
participants in this study emphasized the importance
of a working relationship which captures the affec-
tive as well as the instrumental and behavioural
dimensions of communication, linking the ex-
perience of information sharing inextricably to the
process of relationship building. The strength of the
relationship contributes to the experience of infor-
mation sharing, and artful information sharing
strengthens the relationship. Furthermore, in as much
as those providing medical care play a very promi-
nent role in the woman’s experience of life and
health during breast cancer care, how the process of
information sharing and relationship building unfolds
ultimately contributes to, or detracts from, the
woman’s experience of control over her own life and
health and to her learning to live with cancer. Thus,
the practitioner’s effort affects more than immediate
needs related to breast cancer care.
4.1. Practice implications
This new insight into the process of patient–
physician communication as a working relationship
201
with long-term effects has several important implica-
tions for the practice of patient education and
counselling. Findings suggest the merit of replacing
the traditional expert model of helping with an
enabling approach to care. Furthermore, findings
substantiate the importance of cultivating expertise in
the process of communication to complement and
strengthen, not to replace, expertise in the content
communicated. Thus, the art of doing both at once
must be mastered.
The intricacies of mastering this art of communi-
cation are perhaps particularly challenging in caring
for women with breast cancer. While the traumatic
effects of diagnosis and acute intervention for breast
cancer are well researched [39], generally under-
stood, and frequently addressed, understanding and
dealing with the vulnerability of women with breast
cancer means understanding breast cancer as both a
traumatic and a life-long chronic illness. Chronic
illness creates loss of self [40] and loss of confidence
in one’s health and normal bodily processes [41,42],
heightening the experience of vulnerability [43,44].
Feeling vulnerable may heighten the intensity with
which women with breast cancer feel the present
moments of patient–doctor communication, and
render more powerful their positive or, conversely,
negative experiences of the interaction.
As the synergistic effect of information sharing
and relationship building together helps to overcome
the experience of vulnerability and recreate the
woman’s experience of control over her own life and
health, several specific goals and approaches may
enhance communication with women with breast
cancer. Practitioners need to devote attention to
creating both reciprocity in the relationship [47] and
bi-directional information sharing to establish or to
restore and rebuild a more balanced partnership with
these patients. Helping women with breast cancer to
ask questions, re-emphasizing their right to know,
and fostering their exercise of choices may be
necessary. Supporting more active patient participa-
tion places a heavy burden on both partners, espe-
cially the physician, who needs to be aware of the
woman’s psychological issues, needs, and charac-
teristic response style [16]. But encouraging these
patients to be more assertive may also contribute to
positive outcomes of their cancer care [46].
Time, timing, and a sensitive understanding of
202 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
readiness for information is essential to success in
patient–physician communication. Information pro-
cessing is altered by anxiety. Information must be
provided in well ordered small doses that build upon
and reinforce preceding units [43]. Speaking plainly
and simply in the patient’s language and using the
patient’s metaphors help to clarify biomedical in-
formation and render biomedical judgement convinc-
ing [43], but also undoubtedly also foster relation-
ship building.
As both the speaker’s and the listener’s larger life
context shape the meaning of the message [48], each
individual’s broader understanding of the other af-
fects information sharing. True communication can
only occur if both the speaker and the listener have
derived from these experiences the same relation
between the words and what they are being used to
represent [48]. As the balance of power between
patient and professional is automatically altered by
the patient’s illness [47], the professional faces the
additional relationship-building challenge of shifting
the balance of power to re-establish equilibrium in
the relationship and, thereby, to foster the patient’s
usual sense of control over her life and health [49].
Complementary care provided by support groups
or other helping professionals may also need to be
mobilized to help women with breast cancer to
regain their sense of self and learn to live with
cancer as a chronic disease. Indeed, reframing the
provision of all care, particularly patient education
and counselling, to an approach which provides care
as an ongoing continuous process attuned to the
fluctuating emotions, potential for recurrences, and
all of the challenges to quality of life presented by
chronic illness is crucial.
Explicit reminders of the personal control over life
and health that the woman possesses despite her
experience of breast cancer, and support and encour-
agement to exercise that control, are an essential
component of patient education and counselling. The
patient’s desire for detailed information and prefer-
ence for use of the words ‘cancer’ and ‘malignancy’
when referring to their illness have been found to
indicate their readiness to return to exercising control
over their own life and health [14].
The loss of self that accompanies any chronic
illness, including cancer [44], often necessitates
borrowing the strength of others to sustain one’s
personhood while one’s own self is recovered. Hope
is essential to this process. To create hope, the
professional needs to assist the woman to acquire a
realistic picture of their life and health in the future.
The picture must be one clear enough to motivate her
to do what is necessary to achieve the goal, but also
uncertain enough to explicitly acknowledge the
possibility that the positive expectations and percep-
tions may not be realized [50]. A sense of meaning
and purpose in life, a reason to live and to reach out
into the future past the suffering of the present, must
be maintained or restored [16,45]. A sense of
connectedness, of mutuality, and affiliation allows
the individual to experience being able to count on
important others for affirmation and assistance dur-
ing the re-creation of self [45]. Thus, building a
relationship characterized by caring, sharing, and
trust is a fundamental component of hope, and, in
turn, helping the woman with breast cancer to live
with cancer.
5. Conclusion
The findings of this study illuminate how women
with breast cancer experience patient–physician
communication and underscore the importance of
creating a working relationship built upon a patient-
centered approach [51] and an enabling rather than
expert model of helping. Insights into the dynamic,
synergistic interaction between information sharing
and relationship building and the significance of this
interaction to restoring the woman’s sense of control
over her life and health and, ultimately, to helping
her learn to live with cancer are particularly pertinent
to the practice of patient education and counselling.
The study’s findings also have several implications
for research. Investigation of the physician’s ex-
perience and shared experiences of patient–physician
communication during the provision of treatment of
breast cancer may elicit further insights into com-
munication as a working relationship. Investigators
ultimately need to study the impact of patient
education and counselling strategies designed with
conscious attention to the integration of information-
sharing and relationship-building components,
measuring patient outcomes such as locus of control,
quality of life, and life mastery. Research might also
determine whether educational interventions for
professionals can enhance the art of integrating
 C.L. McWilliam et al. / Patient Education and Counseling 39 (2000) 191 – 204
affective as well as instrumental and behavioural
components of communication and the art of practis-
ing within an enabling rather than expert model of
care. Perhaps most importantly, findings suggest the
importance of investigating the impact of continuity
in the care provider–care recipient relationship on
both immediate and more long-term patient educa-
tion and counselling outcomes. Ultimately, this
direction in particular challenges professionals and
researchers to devise and test the impact of less
fragmented care delivery systems.
The theoretical implications of the findings of this
research also merit attention. The experiences of
study participants suggest that how patient–doctor
communication unfolds affects not just the manage-
ment of the illness, but the enactment of health and
life within the individual’s life context. Thus, ap-
proaching communication as a working relationship
has the potential to promote health, as it is currently
defined. This finding therefore also invites evolution
of theory explicating the contribution of patient
education and counselling to the field of health
promotion. Clearly, the insights gained from this
study of women’s experiences of the process of
patient–physician communication contain many op-
portunities.
Acknowledgements
The authors wish to acknowledge the women with
breast cancer who participated in this study, and the
survivors of breast cancer who have provided on-
going advice at all phases of this research project.
The talents of Carol Thompson and Linda Boyd in
preparing the figure portraying the complex model of
patient–physician communication and the invaluable
services at the Canadian Library of Family Medicine
are also acknowledged. This study was funded by the
Canadian Breast Cancer Initiative. The findings and
conclusions are those of the authors. No official
endorsement by the funding body is intended, nor
should it be inferred.
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