D COMMUNICATION IN CANCER CARE

National 

PATIENT-CENTERED

COMMUNICATIO

IN CANCER CARE

Promoting Healing and 

Reducing Suffering 

U.S. DEPARTMENT 

OF HEALTH AND 

HUMAN SERVICES 

National Institutes 

of Health 

PATIENT-CENTERED
 

COMMUNICATION
 

IN CANCER CARE
 

Promoting Healing and 

Reducing Suffering 

Ronald M. Epstein, MD 

& 

Richard L. Street, Jr, PhD 

National Cancer Institute 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

National Institutes of Health 
Professor and Head, Department of Communication, Texas A&M University; and Chief, Division of Health Communic

and Decision-Making, Houston Center for Quality of Care and Utilization Studies, Baylor College of Medicine 

(e-mail: r-street@tamu.edu). 

This monograph is available online at: http://outcomes.cancer.gov/areas/pcc/communication. 

A limited number of printed copies can also be obtained by calling 1-800-4-CANCER. 

Recommended Citation: 

Epstein RM, Street RL, Jr. Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Sufferi

National Cancer Institute, NIH Publication No. 07-6225. Bethesda, MD, 2007. 
Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .ix 

Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .xi 

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .xiii 

List of Tables and Figures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .xv 

Chapter 1. A Patient-Centered Approach to Cancer Communication Research . . . . . . . . . . . . . . . . . .1 

1.1	 Process of Communication. I: Capacity for Effective Patient-Clinician Communication
 

1.2	 Process of Communication. II: Aligning Patient and Clinician Perspectives
 

1.3	 Communication and Outcomes of Care
 

1.4	 Understanding the Importance of Context
 

1.5	 Conclusion
 

Chapter 2. A Framework for Patient-Centered Communication in Cancer Care . . . . . . . . . . . . . . . .17 

2.1 	 Fostering the Patient-Clinician Relationship
 

2.2 	Exchanging Information
 

2.3	 Responding to Emotions
 

2.4	 Managing Uncertainty
 

2.5	 Making Decisions
 

2.6	 Enabling Patient Self-Management 


2.7	 Conclusion
 

Chapter 3. Pathways from Communication to Health Outcomes: Mediators and Moderators . . . . . .39 

3.1 	 The Fundamental Task: Explaining the Link between Communication and Outcomes
 

3.2 	 A Conceptual Model of Communication and Outcomes
 

3.3 	 Moderating Factors Affecting Communication Processes and the Relationship of
 

Communication Process to Outcomes
 

3.4	 Multilevel Modeling
 

3.5 	Conclusion
 

Chapter 4. Key Communication Tasks and Outcomes: The Cancer Care Continuum . . . . . . . . . . . . .67 

4.1 	Prevention Phase
 

4.2	 Screening Phase
 

4.3	 Diagnosis Phase
 

4.4	 Treatment Phase
 

4.5	 Survivorship Phase
 

4.6	 End-of-Life Phase
 

4.7 	 The Real World of Cancer Care
 

4.8 	Conclusion
 
pp

6.3	 Methodological Issues in Communication Research in Cancer Settings
 

6.4	 A Timeline for Future Research
 

6.5	 Conclusion
 

Appendices 

Appendix A. Communication and Healing Relationships in Cancer Settings . . . . . . . . . . . . . . . . . .1

A.1 	 Understanding the Patient-Clinician Relationship 


A.2 	 Patient Participation in Care 


A.3	 Clinician Self-Awareness and Well-Being
 

A.4 	 Implications for Future Study
 

Appendix B. Information Exchange in Cancer Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1

B.1	 Patients’ Information Needs 


B.2	 Patients’ Information Sources 


B.3	 Information Exchange 


B.4	 Patient Recall and Understanding 


B.5 	 Implications for Future Study
 

B.6	 Communicating Bad News
 

B.7 	Communicating Prognosis
 

Appendix C. Recognizing and Responding to Emotional Distress in Cancer Consultations . . . . . . .1

C.1	 Benefits of Patients’ Emotional Expression 


C.2	 Clinicians’ Responsiveness to Patients’ Emotional States
 

C.3 	 Emotional Well-Being as an Outcome of Patient-Clinician Communication
 

C.4 	 Implications for Future Study
 

Appendix D. Decision-Making in Cancer Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1

D.1 	 Decision-Making in the Screening Phase
 

D.2 	 Decision-Making in the Treatment Phase 


D.3 	 Decision-Making in the End-of-Life Phase 


Appendix E. Interventions to Improve Communication between Patients with 

Cancer and Clinicians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1

E.1	 Communication Skills Training for Clinicians
 

E.2	 Cultural Competency Training for Clinicians
 

E.3 	 Communication Skills Training for Patients
 

E.4	 Interventions at the Team, Practice, and Health Care Systems Levels to Improve
 

Communication between Patients with Cancer and Clinicians
 

E.5 	 Implications for Future Study
 

Appendix F. Survey Instruments Used to Measure Patient and Clinician 

Communication Behavior in Cancer Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1

vii 

ix
 
T

here is growing recognition 

throughout the medical and 

scientific research community 

that an interdisciplinary approach 

to cancer prevention and control 

should incorporate patient-centered 

communication to maximize the 

benefit of current medical discoveries in diagnosis and treatment— 

particularly in the emerging era of 

personalized medicine. Although 

patient-clinician communication 

research traditionally has focused 

on outcomes such as patient satisfaction, comprehension, and 

adjustment, we need to strengthen 

our understanding of how these 

impact health behaviors and disease outcomes. As emphasized in 

the recent NCI-designated cancer 

center directors’ report, 

Accelerating Success against 

Cancer, “Patient-provider communications play a critical role in 

determining who will engage in 

health-enhancing lifestyles that 

reduce cancer risk. They impact 

the likelihood that a person at risk 

for cancer will seek and engage in 

appropriate screening, and they 

also determine whether appropriate 

pharmaco-therapies are used, and 

used appropriately to effectively 

blend with critical behavioral and 

lifestyle changes.” 

Highlighting the need to integrate 

social, psychological, and communication research with biomedical 

research, NCI’s Strategic Plan for 

Leading the Nation calls for 

research assessing the delivery and 

impact of patient-centered communication across the cancer care 

continuum, as well as innovative 

measurement approaches and 

study designs to help monitor and 

track the success of communication efforts over the course of the 

patient, family, and health care 

provider experience. 

Since its creation in 1997, the 

Division of Cancer Control at the 

NCI has played an important leadership role in this essential area of 

research. Originally under the 

leadership of Dr. Barbara Rimer 

(now at the University of North 

Carolina, Chapel Hill), we funded 

a major research initiative, the 

Centers of Excellence in Cancer 

Communication Research, and a 

new surveillance tool, the Health 

Information National Trends 

Survey. As we celebrate the 10­

year anniversary of the division 

and identify research priorities for 

the future, we continue to emphasize research on communication 

that is customized to patients’ 

needs. To further our goals in this 

direction, we commissioned the 

following monograph, PatientCentered Communication in 

Cancer Care: Promoting Healing 

and Reducing Suffering. 

Authors Ronald Epstein and 

Richard Street, Jr, propose a 

conceptual framework and 

describe the state of the science in 

patient-centered communication, 

noting several gaps in the r

and the need to improve an

sify study designs and meth

Their thoughtful analysis ch

lenges the research commu

undertake more ambitious s

of communication processe

address the temporal and co

al complexities of cancer ca

the course of treatment and 

vivorship. This will require 

development and use of mo

sophisticated measurement 

analysis techniques, and NC

remains committed to supp

this essential work. 

Understanding how to optim

communication process betw

patients/family and the heal

delivery team is essential to 

goal of reducing the burden 

cer. We look forward to con

collaboration with researche

practitioners to improve pat

centered cancer communica

strategies and hope that this 

graph will help to inform yo

work in communication scie

Robert T. Croy

D

Division of Cancer Con

Population S

National Cancer 
xi
 
y p

medical information and make difficult, life-altering, treatment decisions. Patients with cancer and 

their family members hope to 

receive care within a health care 

system that would provide them 

with an environment of unfailing 

support and focus on meeting their 

needs as best as possible. 

To facilitate the delivery of such 

“patient-centered” care and to 

enhance the National Cancer 

Institute’s (NCI) mission of reducing suffering due to cancer, the 

Outcomes Research Branch and 

the Health Communication and 

Informatics Research Branch of 

the Division of Cancer Control and 

Population Sciences at NCI, have 

identified the assessment, monitoring, and improvement of the delivery of patient-centered 

communication between 

patients/family and health care 

delivery teams across the cancer 

care continuum as a key 

research priority. 

Our prior work in the area of 

patient-clinician communication 

led us to identify the need for a 

comprehensive conceptual framework that would define core 

elements of patient-centered communication that could then be 

operationalized into standardized 

metrics for collecting data in 

diverse cancer care delivery settings. We also recognized the relative lack of understanding in the 

innovative research in this area, 

we commissioned this monograph, 

Patient-Centered Communication 

in Cancer Care: Promoting 

Healing and Reducing Suffering. 

The authors of the monograph, 

Ronald M. Epstein, MD, and 

Richard L. Street, Jr, PhD, have 

created a valuable piece of scholarship that has resulted from a critical synthesis of existing 

literature, the authors’ personal 

research experience of more than 

25 years, as well as discussions 

with a number of internationally 

recognized experts in the area of 

communication, oncology, health 

care delivery, quality of care 

assessment, and patient advocacy 

who participated in a symposium 

on patient-centered communication 

in cancer care that was organized 

by NCI during the course of the 

monograph project. 

Readers of the monograph should 

note that its focus is on optimizing 

communication processes between 

patients/family and health care 

delivery teams and not just the 

patient-physician dyad. Consequently, 

the authors’ conception of the term 

“patient-clinician communication” 

in this monograph is very broad, 

with the term “clinician” referring 

to all professionals who provide 

care to patients within the cancer 

context, not just physicians, and 

the term “patient” being used as a 

proxy for both the patient and their 

family members who are inv

in their care. 

This monograph is a critical 

step in our efforts to plan fu

NCI-funding opportunities t

will facilitate innovative res

studies in the area of patient

tered communication and pa

outcomes. We hope research

practitioners, and policy ma

will find it as beneficial in th

respective work. 

Neeraj K. Aror

Program Director, 

Centered Communication In

Outcomes Research B

Applied Research P

Division of Cancer 

and Population Sc

National Cancer I
xiii
 
T

he National Cancer Institute 

(NCI) acknowledges the 

following individuals, who, 

in addition to the primary authors, 

Ronald M. Epstein, MD, and 

Richard L. Street, Jr, PhD, made 

significant contributions to 

this monograph. 

Additional Authors 

The following individuals 

contributed to selected parts of 

the monograph: 

Ron D. Hays, PhD (lead author, 

chapter 5); Taj Hadee, MD (coauthor, appendix B); Jennifer Carroll, 

MD (co author, appendix D); 

and Timothy E. Quill, MD 

(coauthor, appendix D). 

NCI Staff 

• Neeraj K. Arora, PhD, was 

the NCI project officer for this 

monograph. His expertise in 

patient-clinician communication research led him to 

identify the need for the monograph, which was subsequently 

produced under his scientific 

leadership and management. 

• Steven B. Clauser, PhD, and 

Bradford W. Hesse, PhD, 

provided support for various 

aspects of the project. They, 

along with the project officer, 

provided significant scientific 

direction to the authors 

throughout the development 

of the monograph. 

• Wendy McLaughlin, MSW, 

MPA, served as the project 

coordinator and efficiently 

assisted the project officer in 

managing all the administrative tasks related to the 

monograph. She also provided 

valuable scientific feedback 

on several drafts of the 

monograph. 

• Tracy Layne, MPH, and 

Denise Buckley, ELS, assisted 

with several tasks related to 

the production and printing of 

the manuscript as an official 

NCI monograph. 

External Reviewers 

In addition to feedback from NCI 

scientific staff, the following 

individuals reviewed and provided 

the authors with helpful commentary on numerous drafts of the 

monograph: 

Anthony Back, MD; Phyllis 

Butow, PhD; Kevin Fiscella, MD, 

MPH; Jennifer Griggs, MD, MPH; 

Ron D. Hays, PhD; Gary Morrow, 

PhD; Timothy E. Quill, MD; 

Laura Siminoff, PhD; Kurt C. 

Stange, MD, PhD; and Stephen 

Zyzanski, PhD. 

NCI Symposium Participan

This monograph was signif

revised on the basis of insig

discussions and commentar

presented at the Symposium 

Patient-Centered Communic

Cancer Care, which was org

by NCI and held on May 15

2006, in Bethesda, Maryland

participants of the symposiu

Terrance L. Albrecht, PhD, 

Neeraj K. Arora, PhD; Anth

Back, MD; Rachel BallardBarbash, MD, MPH; Cathy 

Charles, PhD, MPhil, MA; 

B. Clauser, PhD; Paul D. C

PhD; Robert T. Croyle, PhD

Jo Deering, PhD; Ronald M

Epstein, MD; David H. Gus

PhD; Ron D. Hays, PhD; B

W. Hesse, PhD; Brent Jame

Lenora Johnson, MPH, CH

Susan Leigh, RN; Frances M

Lewis, PhD, MN; Merle H. 

Mishel, PhD, RN, FAAN; A

G. Mulley, Jr, MD, MPP; T

E. Quill, MD; Deborah Sch

MD; Joshua Seidman, PhD

C. Stange, MD, PhD; Richa

Street, Jr, PhD; Stephen Tap

MD, MPH; and Edward H. 

Wagner, MD, MPH, FACP. 
and formatting and editing of 

the manuscript submitted to 

NCI: Christopher Mooney, 

MS; Johny Garner, PhD; 

Judith Lardner, MS; Deborah 

Fox, MA; Peg Downen, BA; 

Patrice Mitchell, BS; and 

Sue Palmiero. 

• Penelope Randall-Levy, BS, 

helped the project officer edit a 

document that summarized key 

points of the monograph and 

was used as background for 

discussions at the NCI 

Symposium on PatientCentered Communication 

in Cancer Care. 

• Lori Alexander, MTPW, ELS, 

provided substantive editing 

services to prepare the final 

manuscript for printing. 

• The Matthews Media Group 

created the cover and interior 

design of the monograph. 

xv 
Tables 

Table 1.1 Examples of Patient-Centered Clinician Behaviors 

Table 1.2 Examples of Active Patient Participation Behaviors 

Table 1.3 Outcomes of Effective Communication 

Table 3.1 Pathways from Patient Needs to Communication to Outcomes: 

Mediators 

Table 3.2 Domains of Health-Related Quality of Life 

Table 3.3 Agency 

Table 3.4 Moderators of Relationship between Patient/Family Needs, 

Communication, and Outcomes 

Table 4.1 Six Functions of Patient/Family-Clinician Communication in 

Cancer Settings 

Table 4.2 Examples of Clinicians’ Communication Tasks and Outcomes at 

Each Phase of the Cancer Care Continuum 

Table 6.1 Behaviors that Clinicians and Patients/Family Must Engage in for 

Effective Communication 

Table 6.2 Outcomes Related to Effective Patient-Clinician Communication 

Table 6.3 Six Fundamental Functions of Patient-Clinician Communication 

Table 6.4 Some Moderators that Influence the Relationship between 

Communication and Outcomes 

Table 6.5 Clinician Behaviors that Can Improve Survival and Enhance 

Quality of Life during Each Phase of the Cancer Care 

Continuum 

Table 6.6 Recommendations for Populations and Settings to be Studied 

Table 6.7 Recommendations for Descriptive Research 

Table 6.8 Recommendations for Intervention Research 

Table 6.9 Recommendations for Methodological Issues 

Figures 

Figure 1.1 Elements of Patient-Centered Care 

Figure 2.1 Six Core Functions of Patient-Clinician Communication 

Figure 3.1 Conceptual Model of Communication, Mediators, and Health 

Outcomes in Cancer Care Settings 

Figure 3.2 Clinician Communication Behaviors that Enhance Social 

Support 

Figure 3.3 Two-dimensional Model of Moderation of the CommunicationOutcome Relationships in Cancer 

Figure 4.1 Communication Functions and Outcomes in Each Phase of the 

Cancer Care Continuum 

Figure 5.1 Testing a Mediation Hypothesis 
xvii
 
Although cancer communication has much in common with communication 

in other health contexts, several 

unique elements of cancer care 

make cancer communication 

research important. Among the 

distinct features of cancer care 

that affect communication are that 

few other illnesses are both lifethreatening and potentially curable, that care involves numerous 

clinicians and multiple treatment 

modalities (such as oral and intravenous medications, radiation, 

and surgery); that there is often a 

long period of uncertainty after 

treatment, and that the patient’s 

health care team often changes 

over time. In particular, communication in the cancer care setting 

must help patients: 

• Receive bad news 

• Handle the emotional impact 

of a life-threatening illness 

• Understand and remember 

complex information 

• Communicate with multiple 

health professionals 

• Understand statistics related to 

prognosis 

• Deal with uncertainty while 

maintaining hope 

• Build trust that will sustain 

long-term clinical relationships 

• Make decisions about treatment, possibly including participation in clinical trials 

• Adopt health-promoting
 

behaviors 


As acknowledged by the American 

Society of Clinical Oncology1 and 

Institute of Medicine (IOM) 

reports,2-4 communication is a key 

clinical skill. Unfortunately, few 

guidelines exist to help clinicians 

and health care systems communicate effectively with patients who 

have cancer. 

This monograph addresses communication between patients and 

clinicians that embraces three core 

attributes of “patient-centered” 

care: consideration of patients’ 

needs, perspectives, and individual 

experiences; provision of opportunities to patients to participate in 

their care; and enhancement of the 

patient-clinician relationship.5 In a 

2001 IOM report, patient-centeredness is noted to be a quality that 

relates not only to individual clinicians but also to the health care 

system (Figure 1.1).4 That is, 

patient-centered care depends collectively on clinicians, patients, 

relationships (clinical and social), 

and health services. The interactions among these elements are 

complex, and the shortcomings of 

any one element can significantly 

decrease the quality of care a 

patient receives. 
Improved Communication 

Improved Health Outcomes 

Informed, activated, 

participatory patient 

and family 

Accessible, wellorganized, responsive 

health care system 

Patient-centered 

communicative 

clinician 

We define patient-centered communication in terms of processes 

and outcomes of the patient-clinician interaction:5 

• Eliciting, understanding, 

and validating the patient’s 

perspective (e.g., concerns, 

feelings, expectations) 

• Understanding the patient 

within his or her own psychological and social context 

• Reaching a shared understanding of the patient’s problem 

and its treatment 

• Helping a patient share power 

by offering him or her meaningful involvement in choices 

relating to his or her health 

Patient-centered communication 

also builds a stronger patient-clinician relationship characterized by 

mutual trust, respect, and commitment. However, the outcomes of 

patient-clinician communication 

must extend beyond the interaction; ideally, communication must 

also contribute to enhancing the 

patient’s well-being and to reducing suffering after the patient 

leaves the consultation. For example, a patient-clinician encounter 

that meets the four criteria noted 

here may do little to enhance the 

patient’s well-being if a medical 

error occurred, if treatment was 

unacceptably delayed, if access to 

needed services was not available, 

or if subsequent family decisions 

undermined the intentions and 

decisions reached in the consultation. A model of patient-centered 

communication in cancer care not 

between communicatio

health outcomes. 

1.1 Process of Comm

I: Capacity for Effecti

Clinician Communica

For communication to 

to healing and reduced 

clinicians, patients, an

lies must have the capa

engage in communicat

iors that contribute to t

tives of patient-centere

individuals, clinicians 

will communicate com

when each is motivate

cient knowledge, unde

and self-awareness of 

required to communic

tively; and has suitable 

and linguistic skills to 

effective communicati

and adapt them approp

1.1.1 Role of motivati

Simply put, competent 

cators want to be so. A

reasonable to believe t

cians typically have a 

vation to provide high

health care, several fac

interfere with this desi

many types of skills, a

ual’s effort often wane

experiencing fatigue, a 

may contribute to med

Some clinicians may s

for their own needs ov

2 
communication appears to be 

stronger for clinicians who value 

caring and sharing in the patientclinician relationship8,9 and 

approach communication as not 

simply the transfer of information 

but also as the formation of relationships.10,11 

Patients, too, must be motivated to 

talk openly and honestly about 

their concerns, fears, expectations, 

and preferences. Some patients 

may deliberately avoid topics they 

find embarrassing or uncomfortable to discuss (such as sexual 

activity), that they think the clinician would disapprove of (such as 

disagreement with the clinician’s 

recommendation), or that they 

believe are not pertinent to the 

interaction or the clinician’s role 

(such as family relationships).12 

1.1.2 Role of knowledge 

Effective communication in health 

care settings requires that the clinician and patient have sufficient 

understanding of one another’s 

perspectives, the health condition, 

and the purpose of the interaction. 

They also should share conversational norms and an understanding 

of each other’s role in the interaction. With respect to knowledge, a 

significant challenge for clinicians 

is having an accurate understanding of the patient’s perspective, 

including his or her concerns, feel

nations, and validate or address the 

patient’s emotional state.12,13 Some 

research indicates that problems of 

misunderstanding may contribute 

to bias, especially when the race or 

ethnicity of the clinician and 

patient differs.14,15 

Although such knowledge can be 

learned through direct experience 

or vicariously through observation 

or experiential training, research 

indicates that clinicians often misjudge patients’ perspectives, 

including their preferences,16,17 likelihood to follow treatment, satisfaction with care18 understandings 

and beliefs about health,19-21 or 

emotional states.22 

With respect to patients, perhaps 

the greatest knowledge barriers are 

related to health literacy. This 

includes having an accurate understanding of health in general, as 

well as of disease states, the care 

process, and health-related terminology.23 For example, with some 

understanding of health concepts 

and terminology, patients are better 

able to understand and talk about 

various topics that arise in cancer 

consultations.24 This, in turn, 

increases the likelihood that 

patients can contribute to decisionmaking to the degree they wish 

and more capably provide 

informed consent.23,25,26 Thus, 

patient education interventions 

aimed at increasing patient 

involvement not only should 

health concerns.26 

1.1.3 Role of skill: clinician

The capacity to produce pati

centered communication als

depends on two types of ski

behavioral and perceptual. S

clinician behaviors can be co

ered “patient-centered,” give

research that shows them to 

quently correlate with patien

faction, adherence, and impr

health outcomes (Table 1.1)

Some behaviors, especially t

the nonverbal domain, are di

a function of one’s motivatio

state and orientation toward 

patient. For example, a clinic

who cares about the patient a

genuinely interested in what 

patient has to say will natura

have eye contact, be nonverb

attentive, and talk about topi

raised by the patient. Other b

iors may require more cogni

effort, especially if they are n

of the clinician’s communica

style, such as avoiding interr

the patient early in the consu

Still other behaviors may be 

novel for clinicians—such a

explaining disease processes 

everyday language—and con

able training and practice ma

necessary before these behav

can be carried out effectively

From a communication pers

tive, the most effective clinic
•	 Maintaining eye contact 

•	 Forward lean to indicate 

attentiveness 

•	 Nodding to indicate 

understanding 

•	 Absence of distracting 

movements (e.g., fidgeting) 

Verbal Behaviors 

•	 Avoiding interruptions 

•	 Establishing purpose of 

the visit 

•	 Encouraging patient 

participation 

•	 Soliciting the patient’s 

beliefs, values, and 

preferences 

•	 Eliciting and validating the 

patient’s emotions 

•	 Asking about family and 

social context 

•	 Providing sufficient 

information 

•	 Providing clear, jargon-free 

explanations 

•	 Checking for patient 

understanding 

•	 Offering reassurance 

•	 Offering encouragement 

and support 

are those who have a patient-centered communication “style” that 

they use across their consultations 

and in multiple contexts.30 For 

example, research shows that some 

clinicians routinely provide more 

information; engage in partnership 

emerges from a variety of sources, 

including socialization (e.g., as 

related to gender33,34 or culture35); 

repeated experience with certain 

kinds of patients, such as children 

or individuals older than 65 years; 

medical training;35-37 and philosophy of care.8 

Clinicians also must have observational skills and an appropriate 

level of self-awareness. Few studies have focused on clinicians’ 

mindfulness and self-monitoring, 

but the lack of these skills may 

lead to unexamined biases, careless 

errors in clinical practice,38,39 and 

confusion between the emotional 

needs of the patient and those of 

the clinician.40,41 Patient-centered 

clinicians presumably would be 

more successful when monitoring 

the dynamics of the interaction, 

including their role in the 

encounter, the patient’s role, and 

the way in which the encounter is 

unfolding. These clinicians also are 

aware of differences between the 

patient’s and their own explanatory 

model of the patient’s health and 

will explore the patient’s model in 

order to identify potentially problematic incongruities.21,42 Because 

they have a more general orientation to the patient’s perspective, as 

well as an awareness of their own 

feelings, patient-centered clinicians should be able to accurately 

assess the patient’s needs and be 

less likely to act on the basis of 

less favorably than oth

that these attitudes ma

quality of care patients 

The principles of self-

self-calibration, and se

during clinical practice 

formalized in discussio

ful practice—practice 

ized by the capacity fo

attentiveness to one’s o

processes, curiosity in 

disconfirming data, inf

bility, and presence.45-4

ing programs for cance

have incorporated self

activities.48-52 However

cal studies have explor

awareness enhances clin

Admittedly, there may 

uations—such as a me

gency or a self-destruc

patient—that call for c

use a communication s

which they strictly con

tent of the interaction, 

biomedical issues, inte

closed-ended question

decisions for patients. 

a general rule, “clinici

communication does l

enhance care or bring 

perspective into the en

1.1.4 Role of skill: pa

To achieve patient-cent

patients with cancer mu

nicate in a way that rev

needs, preferences, exp

4 
ing topics for discussion, and telling 

their “health stories” (Table 1.2).53 

These behaviors are “active” forms 

of communication because they 

interject the patient’s perspective 

into the interaction and have the 

potential to influence the clinician’s behavior and decision-making.32,33,54-56 By contrast, a patient 

who remains passive during the 

interaction does little to convey his 

or her needs, fears, expectations, 

beliefs, and preferences. Health 

outcomes may be at risk in these 

situations, and the encounter will 

not satisfy the patient’s need to feel 

known, understood, or heard or 

satisfy the clinician’s moral obligation to address the patient’s underlying concerns in order to 

maximize healing. 

Patients vary in their abilities to be 

active communicators. Although 

we are aware of no studies that 

have examined the communication 

of a particular patient across interactions with different clinicians, 

research indicates that patients’ 

communicative styles are associated with social, cultural, and 

personality factors. For example, 

the degree to which patients with 

cancer are active participants in 

consultations has been linked to 

their level of education24,57,58 and 

ethnicity.59 In other clinical settings, more active patient participation is associated with orientations 

to the patient-clinician relation

Communicating assertively 

•	 Offering opinions 

•	 Stating preferences 

•	 Interrupting, if necessary 

•	 Sharing beliefs about health 

•	 Introducing topics for 

discussion 

Expressing concerns and 

feelings 

•	 Expressing emotions 

•	 Disclosing fears and worries 

•	 Noting frustration 

Telling one’s health “story” in 

the context of everyday life 

ships (e.g., shared control vs. 

physician control),60 gender,61 

and personality.62 

1.1.5 Implications for improving 

patient-clinician communication 

Future research should focus on 

the most effective and efficient 

ways to expand clinician and 

patient capacity for patient-centered communication, particularly 

in the skill domain. Because personality and socialization are relatively stable attributes of 

individuals after age 30,63 skillbuilding in communication style 

and observation is particularly 

important early in a clinician’s 

clinicians acquire and efficie

deploy patient-centered beh

develop the perceptual acuit

assess the patient’s situation 

rately, maintain a sense of se

awareness, and monitor the 

of the encounter. To be effec

the instruction will need to u

multiple techniques, such as 

playing, group discussion, te

nials, patient or expert feedb

self-assessment, and practic

Given that misunderstanding 

subconscious bias are partic

problematic when the clinic

patient are from different cu

backgrounds, research is esp

needed to develop models fo

tural competency training in

ing patient-centered care. An 

individual patient, on the oth

hand, has fewer encounters w

clinicians than an individual 

cian will have with patients. 

patients’ communication beh

are conceivably more modif

Patient “activation” interven

are most successful when pati

• Believe in the legitimac

their participation in car

• Have some information 

their health condition an

treatment options 

• Learn specific communi

strategies and behaviors 

in their interactions with 

clinicians 
important for patient interventions 

as well, as research has shown that 

patients in minority groups and 

with lower socioeconomic backgrounds are often less participatory 

than their counterparts24,59 and that 

some patient education interventions are less effective for such 

individuals.69,70 Clinician and 

patient interventions are reviewed 

in greater detail in Appendix E. 

1.2 Process of Communication. 

II: Aligning Patient and Clinician 

Perspectives 

Although the behaviors listed in 

Tables 1.1 and 1.2 often characterize patient-centered communication 

at the level of the individual communicator, effective (or ineffective) 

communication is fundamentally 

an outcome of the interaction 

between the clinician and the patient 

and family members. Thus, patientcentered communication occurs 

when both parties communicate in 

a way to reveal, understand, and, 

ideally, align their respective perspectives on the patient’s health. 

We use the term “alignment” to 

capture the fact that effective communication is a process that 

requires cooperation, coordination, 

discovery, negotiation, and reconciliation in order to achieve mutual 

understanding, an accurate diagnosis, shared goals, an appropriate 

treatment plan, and a stronger 

patient-clinician relationship. 

make appropriate adaptations to 

meet the patient’s needs. Although 

individual behaviors have been the 

subject of communication 

research, the process of alignment 

rarely has been studied. 

1.2.1 Communication as a 

process of mutual influence 

As with all communication encounters, the clinical consultation is 

jointly constructed by the participants as they weave together communicative actions to create the 

conversation. How one participant 

communicates will affect the communication of the other.71 The fact 

that interpersonal communication is 

a process of mutual influence has 

important implications for patientcentered communication. If a 

patient believes that his or her perspective is not being addressed, he 

or she can use active communication tactics such as asking questions, interrupting, and expressing 

worries that may elicit more interest 

and inquiry from the clinician. For 

example, by asking a question, stating an opinion, or expressing concerns, the patient explicitly provides 

information that the clinician can 

use to meet the patient’s needs more 

effectively. This approach also 

serves to introduce conversational 

content the clinician is expected to 

address. Indeed, clinicians often are 

more informative, accommodative, 

and supportive with patients who 

the patient’s opinion or 

offering encouragemen

behaviors generally elic

patient involvement bec

clinician’s communicat

legitimizes and specific

the patient’s views.24,59,6

many of the behaviors l

Table 1.1 can elicit thos

1.2, and vice versa. 

1.2.2 Aligning commu

goals 

Within any clinical enc

the clinician and patien

for the interaction. The

related to each person’s 

tions, preferences, and 

purposes of the consult

Sometimes these goals 

quite specific and expli

deciding on cancer trea

discussing the side effe

tion. Other goals may b

eral and vague; for exam

patient may want to avo

cussing sexual dysfunc

effect of prostate cance

or a clinician may hope 

patient does not get “em

Communication goals 

lematic in consultation

reasons. First, clinician

patients often assume t

shares the same goals, 

tion that may be errone

clinicians and patients 

different expectations, 

6 
in the interview.17,73-76 Patient and 

clinician concordance on shared 

understanding of goals and expectations is important, as research 

links the lack of concordance to 

lower patient satisfaction and 

adherence.18,76 Also, not all patients 

may have the same goals. For 

example, some patients want to 

talk to their clinicians about family 

and work relationships; others 

think these topics are not pertinent 

to the consultation.77 Physicians 

may assume that a patient wants 

diagnostic testing for reassurance, 

but the patient may not necessarily 

want more tests.78 Without verifying that the clinician and patient 

share the same goals, the consultation may unfold with the clinician 

accomplishing his or her agenda, 

believing it is the patient’s agenda 

as well. The patient may appear to 

be listening cooperatively, while in 

reality he or she may be frustrated 

by the course of the consultation 

but does little to communicate that 

frustration to the clinician. 

In a particular series of consultations, an individual patient may 

seek many different things: 

• Care for routine surveillance 

• Test results 

• Discussion of treatment
 

options
 

• Evaluation of the effectiveness 

of treatment 

serious disease is present 

• Consideration of decisions 

about current and future care 

• Administrative purposes (work 

excuse, prescription refill) 

In addition, a patient may simply 

want to be understood. On the 

other hand, clinicians make 

choices about what to discuss. As 

mentioned previously, they may 

avoid some topics in an attempt to 

stay on schedule. They also may 

consider some issues, such as making sure that the patient understands the treatment options, more 

appropriate than others, such as 

discussing the patient’s family 

problems. 

On an individual level, a clinician 

or patient may have multiple, 

sometimes conflicting goals. As an 

example, a patient with cancer may 

want to talk about his or her feelings of losing hope, yet want to be 

perceived as strong and a fighter; a 

clinician may want to be supportive but feels a need to scold a selfdestructive patient. Moreover, 

these goals and preferences may 

change during the course of the 

consultation (e.g., a patient initially wants to make a treatment 

decision but then wants the clinician to decide; a patient does not 

want chemotherapy but decides to 

schedule it after hearing the clinician’s reasoning). Patients with 

multiple and conflicting goals may 

needed to understand the im

incongruity and malleability 

nician and patient goals on t

communication in the consu

the decisions reached, and th

sequent follow through. 

1.2.3 Adapting to meet the 

patient’s needs 

While communication is cha

ized by mutual influence, the

influences are often below th

of awareness. One key defin

ment of effective patient-cen

communication is the clinici

ability to monitor and consci

adapt communication to mee

patient’s needs. The observa

and perceptual skills describ

lier provide guidance for how 

cians can appropriately adap

communication. An obvious

important, form of adaptatio

presenting information in a w

patient understands. For exam

when discussing diagnostic i

mation, an observant clinicia

detect subtle, nonverbal cues 

patient confusion and either 

rephrase or restate the inform

Also, periodically checking 

patient understanding will he

clinician determine whether 

municative adaptations are n

A clinician may approach th

cussion of cancer treatment o

in a cognitive, rational way b

notice that the patient is emo

ally distraught. In this circum
offering reassurance or support. 

A second area important for alignment is discovering the way in 

which patients want to be involved 

in decision-making. Clinicians are 

not particularly good judges of 

patients’ preferences for involvement in decision-making in the 

cancer setting.16,17,73 Thus, it is 

important to identify these preferences and make appropriate adaptations. An oncologist who routinely 

solicits and encourages patient 

involvement in decision-making 

may take more responsibility if he 

or she senses that the patient wants 

this. This clinician may still 

actively encourage the patient to 

talk about his or her concerns, however. Conversely, clinicians who 

have limited perceptiveness or a 

fixed communication style will 

have less adaptability and will find 

they interact with some patients 

effectively but have considerable 

difficulty with others. 

Lastly, communication errors and 

misinterpretations are quite common in conversation and even more 

likely in cancer settings, where 

cognitive complexity and emotional intensity are particularly 

common. Thus, conversation repair 

is a normal and expected form of 

communication adaptation. 

Conversation repair is needed when 

there is a difference between how 

the clinician and the patient define 

or interpret words or concepts. For 

24% (standard deviation, 30%).79 

Similarly, in discussions of advance 

directives and resuscitation, the 

question of “doing everything” 

often arises;80 yet, families and 

patients may not have the same 

understanding as the clinician 

about the extent of “everything.” 

These kinds of miscommunications 

are even more likely when clinicians and patients are not of the 

same race, ethnicity, or socioeconomic status.14,15,81 On discovering 

these misinterpretations, clinicians 

can adapt their communication by 

simply rephrasing the information 

or perhaps engaging in a detailed 

discussion to unravel the miscommunication about therapeutic goals 

or actions.9,82-84 The key skills for 

clinicians are to recognize these 

miscommunications and make 

appropriate conversational repair. 

1.2.4 Implications for improving 

patient-clinician communication 

Clinicians vary their communication with different types of 

patients. Studies have shown that 

clinicians often talk more about 

relationships and feelings with 

female patients85 and give more 

information to better educated 

patients,33,35 and white patients.86 In 

addition, clinicians sometimes talk 

in more simplistic terms to older 

patients86 and vary the tone and 

length of their consultations 

depending on the nature of the 

cian bias or prejudicia

Lastly, little is known a

patients monitor, adapt

to specific situations. A

sal theory89 suggests th

tions of low emotional 

patients make commun

tations to meet their inf

needs, emotional needs

ment preferences. For e

patient who has accept

a cancer diagnosis mig

cerns about the side eff

chemotherapy to the cl

discuss different manag

options with few emoti

tones. This patient mig

interject his or her pers

given the explicit oppo

response to a question 

cian’s partnering behav

assertive patients may i

new topic of discussion 

out the clinician’s invit

However, in situations 

by high levels of physi

fort, anxiety, cognitive 

and/or ambiguity, the s

may become overwhel

the cognitive and emot

exceeds his or her capa

to the requirements of t

tion.90 In those cases, cl

need to adopt a differen

cation style than would 

work well for that patie

8 
ments clinicians make in response 

to ambiguous symptoms or poor 

prognoses. Recent findings suggest 

that when patients present symptoms that do not conform to typical 

disease patterns (“medically unexplained symptoms”), physicians 

tend toward premature closure, 

explore those concerns less thoroughly, and offer less validation and 

empathy.91 When encountering a 

patient with an incurable cancer, a 

sympathetic clinician may attempt 

to reduce his or her own anxiety or 

the patient’s anxiety by inflating 

estimates of a favorable prognosis.92 

The clinician’s task, then, is to 

restore sufficient comfort and order 

so that the patient can participate to 

the degree that he or she is capable. 

1.3 Communication and 

Outcomes of Care 

Patient-clinician communication 

may contribute directly or indirectly to a number of outcomes, a 

partial list of which is presented in 

Table 1.3. From a patient-centered 

care perspective, patient-clinician 

communication should contribute 

positively to at least one of three 

sets of outcomes; the first two, 

quality of the encounter and intermediate outcomes (e.g., adherence, 

self-care efficacy), may contribute 

to the third, health outcomes 

(improved survival, subjective 

well-being, and functioning). 

cian, and third parties. These perceptions are not necessarily 

congruent and often are highly 

Table 1.3 Outcomes of Effective Communication 

nosis. However, the patient m

have been dissatisfied becau

oncologist dominated the co

Communication outcomes 

•	 Strong patient/familyclinician relationships (trust, 

rapport, respect, involvement 

of family and caregivers) 

•	 Effective information 

exchange (recall of 

information, feeling known 

and understood) 

•	 Validation of emotions (e.g., 

empathy) 

•	 Acknowledgment, 

understanding, and tolerance 

of uncertainty 

•	 Patient participation in 

decision-making 

•	 Coordination of care 

Intermediate outcomes 

•	 Strong therapeutic alliances 

•	 Patient knowledge and 

understanding 

•	 Emotional self-management 

•	 High-quality medical 

decisions (informed by 

clinical evidence, concordant 

with patient values, and 

mutually endorsed) 

•	 Family/social support and 

advocacy 

•	 Patient self-efficacy, 

empowerment, and 

enablement 

•	 Improved adherence, he

habits, and self-care 

•	 Access to care and effect

use of the health care sy

Health outcomes 

•	 Survival and disease-free 

survival 

– Prevention and early 

detection of cancer 

– Accurate diagnosis a

completion of evide

based treatment 

– Maintenance of 

remission 

•	 Health-related quality of 

– Functioning: cogniti

physical, mental, so

and role 

– Well-being: physical, 

emotional 

– Health perceptions 

Societal outcomes 

•	 Cost-effective utilization 

health services 

•	 Reduction in disparities i

health and health care 

•	 Ethical practice (e.g., 

informed consent) 
behavioral evidence of such when 

a video recording of the encounter 

is evaluated.93 Lastly, the clinician 

and patient may believe they had a 

high-quality encounter although a 

chart audit finds evidence of inadequate care. Although a patient-centered care perspective might 

emphasize the patient’s judgment 

of quality, our contention for cancer care is that the perspectives of 

all stakeholders—patients, clinicians, relevant third parties (e.g., 

family members, clinic administrators)—must be recognized and, 

when discrepant, aligned. 

From the patient’s perspective, 

effective cancer communication 

should promote overall satisfaction 

with care as well as satisfaction 

with the clinician’s technical skills, 

the clinician’s communication, 

and the decision reached. Other 

indicators of high-quality care 

from the patient’s viewpoint might 

be considered proximal outcomes 

of communication, such as the 

following: 

• Feeling understood by his or 

her clinician 

• Actively participating in the 

interaction 

• Gaining an improved understanding of the diagnosis and 

treatment options 

• Obtaining help in coping with 

uncertainty 

communication, both past and current. In other words, positive or 

negative experiences in the past 

may influence how the patient perceives the quality of the current 

encounter. 

Although much less studied, the 

clinician’s perceptions of effective 

communication are also important. 

These outcomes include the following: 

• Satisfaction with the encounter 

• Sufficient understanding of the 

patient’s perspective (beliefs, 

values, concerns, preferences) 

to guide further medical care 

• Sense of having provided highquality health care (e.g., the 

patient is satisfied, is committed 

to a treatment plan, and leaves 

the interaction with a sense of 

purpose, hope, and optimism) 

• Rapport with the patient (trust, 

cooperation) 

While the patient’s judgment of 

quality of care may be related to 

intermediate patient outcomes such 

as self-care skills and adherence to 

a treatment plan, the clinician’s 

judgment of quality relate to job 

satisfaction and a lower level of 

burnout,94 both of which may affect 

the quality of future interactions 

with patients,95 attitudes toward 

patients (including bias), patient 

adherence,96 and even quality of 

care delivered.97,98 

patient’s judgments. W

ily member’s views dif

those of the patient, fam

tionships may be strain

lowering the patient’s q

life or becoming a barr

patient’s commitment 

Administrators and ins

perspective on the pati

encounter (e.g., guidel

ence, evidence of med

especially as it relates 

quality of care, efficien

priate use of resources

ing risk of litigation. T

perspectives are often 

yet there is little resear

the alignment might be 

More studies are neede

pare the patient’s, fami

cian’s, and other stakeh

assessments of quality 

importantly, to evaluat

munication factors tha

respective judgments a

degree of congruence a

1.3.2 Communication 

intermediate outcomes 

For patient-clinician co

tion to contribute to hea

reduced suffering in ca

must activate mechanis

directly affect health. In 

graph, we propose that 

health benefits of effect

clinician communicatio

its role in accomplishin

ate outcomes (Table 1.3

10 
produces greater patient understanding of the benefits of tamoxifen should lead, in turn, to better 

adherence to a therapy that has 

proven effectiveness in preventing 

breast cancer recurrence. If a patient 

with prostate cancer leaves a consultation with an accurate understanding of the risks and benefits of 

brachytherapy and feels involved 

and satisfied with a decision to 

undergo this treatment, he may be 

better prepared to cope with the 

potential side effects and thus have 

better emotional well-being. If, during a consultation, a patient with 

colon cancer learns sufficient selfcare skills for managing a 

colostomy, he or she may be better 

able to cope with the day-to-day 

management of fecal discharge in a 

way that did not interfere with 

social functioning. These potential 

pathways that link communication 

to improved health are discussed in 

more detail in Chapter 3. 

Clinician and patient perceptions of 

effective communication can contribute to, but do not guarantee, 

actual improvement in patient’s 

health or health behavior. Kinmonth 

et al.99 found that patients more satisfied with their diabetes care (an 

indicator of quality of care) actually 

gained more weight following the 

visit (an indicator of poorer diabetes 

management) than did less satisfied 

patients. Perhaps satisfied patients 

were less vigilant of their own self

requests for antidepressant medications they saw advertised on television, physician prescribing 

increased not only for patients with 

major depression but also for 

patients with questionable clinical 

indications.54 

1.3.3 Communication and health 

outcomes 

The two primary outcomes of 

effective communication should be 

improved survival and improved 

quality of life, particularly healthrelated quality of life. 

Even though, theoretically, better 

communication can lead to better 

treatment choices, the evidence is 

scant for direct links between specific patient-clinician communications and measurable changes in 

survival or the biological course of 

disease. However, there is growing 

evidence that communication can 

directly affect the patient’s emotional well-being and psychological symptoms. For example, adults 

with cancer have reported more 

hope,100,101 and children with cancer 

have experienced less anxiety and 

depression102 when physicians were 

open about the diagnosis and prognosis. According to Schofield et 

al.,103 communication that may 

lower anxiety included preparing 

the patient for diagnosis, giving the 

patient clear information, providing written information, discussing 

emotional states can be quit

plex. For example, patients w

cancer are often very anxiou

about common physical sym

(i.e., the fear these symptom

might be related to the cance

the clinicians’ use of reassur

can reduce this anxiety. In so

cases, however, providing re

ance may worsen outcomes 

appears to avoid the focus o

patient’s anxiety or is offere

before the patient can expre

or her concerns.106 

Little is known about how th

patient’s communication du

consultation affects emotion

well-being. Some studies in

that a patient’s participation 

decision-making may result 

greater levels of anxiety,107 p

due to a greater sense of resp

bility for treatment outcome

the other hand, patient invol

may lead to greater satisfact

which, in turn, is associated 

less emotional distress.105,107,1

In short, much more researc

needed on how patient-clini

communication and clinician

ily communication affect he

outcomes directly and throu

ious mediators. We will add

some of these issues in Chap

and 6. 
layers of context, including the following: 

• Disease factors (e.g., type of 

cancer, stage of disease) 

• Family and social environment 

• Cultural context 

• Media environments (e.g., 

coverage of health topics, 

access to information through 

the Internet) 

• Health care system 

• Societal factors (e.g., laws, 

socioeconomic status) 

Obviously, an attempt to account 

simultaneously for all elements of 

context that potentially affect all 

aspects of communication and cancer outcomes would be futile. 

Hence, in this monograph, we 

adopted the following as a way to 

make the role of context manageable. 

First, context is important for cancer communication because it is a 

source of potentially powerful 

mediators and moderators of 

patient-centered communication 

processes and outcomes (discussed 

in Chapter 3). 

Second, we hold that the primary 

context for the processes of 

patient-centered communication is 

the interpersonal context—the 

actual encounter among clinicians, 

patients, and families. In other 

words, what unfolds in these 

system; media coverage of a cancer issue; cultural aspects, such as 

the degree of fatalism and spirituality; and insurance coverage can 

influence whether clinician and 

patient even have a consultation at 

all. However, once the patient and 

clinician interact, these contextual 

factors influence communication 

through their effect on the interactants’ goals, perceptions, and 

behaviors. For example, a clinician 

and patient may discuss experimental treatment as one option 

only if the patient lives in a location where phase 3 clinical trials 

are being conducted. Family members may pressure a patient toward 

unconventional therapies which, in 

turn, may affect how the patient 

discusses treatment options with 

the clinician. 

Third, as will be discussed in 

Chapter 3, context is a source of 

moderators that reinforce or constrain the various pathways linking 

communication to improved 

health. Examples of such effects 

include a patient’s stronger intent 

to follow through on a treatment 

decision when family members 

support such a decision; a patient’s 

decision to stop chemotherapy 

because of news stories of miraculous recoveries from herbal treatments; or a patient’s decreased 

sense of personal control because 

of a spiritual belief that his or her 

fate rests in God’s hands. 

diagnosis, treatment, s

or end of life. In Chapt

examine cancer comm

processes and outcome

each of these phases. 

1.5 Conclusion 

This chapter provides 

of patient-centered com

with a specific focus o

tive communication de

only on clinicians’ and 

individual capacity for 

communication but als

abilities to adapt behav

align their perspectives 

plish shared goals. We 

several levels of outcom

be linked to effective c

tion, ranging from qua

within the encounter it

health improvement lo

consultation is over. H

also important to recog

patient-clinician comm

embedded within mult

of context that can mo

mediate the relationshi

communication proces

comes. Future research 

to an understanding of 

of cancer communicati

vide insight into how b

design interventions to 

cancer care. 

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16 
Our goal in this and the next 

three chapters is to develop 

a framework that can guide 

future research in patient-clinician 

communication in cancer settings. 

The framework should have several qualities; it should be 

• Simple enough to be generally 

understood and useful 

• Complex enough to account 

for clinical reality 

• Designed to involve all relevant 

players, including different 

types of patients, families, clinicians, and health care systems 

• Applicable to the relationship 

between clinical communication and relevant patient health 

outcomes 

Furthermore, the framework 

should contain measurable communication behaviors and meaningful links between the players, 

functions, and desired health outcomes. 

Our framework for patient-centered communication processes 

and outcomes in cancer care is 

organized around six core functions of patient-clinician communication (Figure 2.1): 

• Fostering healing relationships 

• Exchanging information 

• Responding to emotions 

• Managing uncertainty 

• Making decisions 

• Enabling patient self-


management 


These functions, however, are neither independent nor hierarchical. 

Rather, they overlap and interact 

to produce communication that 

can affect important health outcomes. Consider the situation of a 

woman with breast cancer who 

has been advised to take tamoxifen for five years after initial 

treatment. Several factors are necessary to maximize the likelihood 

that she will follow through with 

this recommendation. She should 

trust her clinical team, have information about side effects, know 

ways to manage her fears and 

anxiety, understand the uncertainties implicit in any treatment recommendation, have participated 

in the decision to take tamoxifen, 

and remember to take the medication. Interactions among these 

functions can be complex and 

recursive. For example, clinicians 

who provide high-quality information may be more trusted, 

which, in turn, may reduce patient 

anxiety. Conversely, patients who 

are excessively anxious may have 

difficulty assimilating information, which, in turn, may affect 

trust. 

Far more is known about some of 

these functions than others. There 

are hundreds of articles and several reviews of patients’ information 
Makin

Decisio

Fostering Healing 

Relationships 

Enabling Patient 

Self-Management 

Managing 

Uncertainty 

Health 

Outcomes 

needs and sources and on patients’ 

preferred roles in decision-making. 

There are also published articles 

about responding to patients’ emotions and the patient-clinician relationship in general. The literature 

on uncertainty and enablement is 

sparse, but the absence of prior 

studies should not diminish the 

importance of the role of these 

factors in effective communication. Research to date pertaining to 

these communication functions is 

summarized briefly here, with 

more extensive literature reviews 

and references in Appendices A 

through D. 

In this chapter, we describe the six 

functions and associated communication behaviors for both clinicians and patients. In the next 

chapter, we discuss various “pathways” through which these functions affect outcomes of care and 

factors that moderate the relationships between communication and 

outcomes. In Chapter 4, we discuss each of the functions and 

pathways within the context of each 

phase of the cancer care continuum. As previously noted, we use 

the words “clinician” and “patient” 

to refer to all relevant members of 

the health care team and patients’ 

family units, respectively. 

2.1 Fostering the Pat

Clinician Relationship 

Patient-centered cance

requires patient/family

relationships that are c

by trust and rapport. F

all parties should have 

understanding of each 

and responsibilities. R

are stronger when clin

to maximize the likelih

patients and families w

pate actively in clinica

ters. This may involve 

issues that can create d

care, such as those rela

ethnicity, language, an

Fostering effective rela

18 
nication. 

Healing relationships are more 

than sources of information and 

expertise; they also provide emotional support, guidance, and 

understanding.1-3 These relationships can help patients adjust better to their illnesses,3-6 perhaps partially by increasing social support, 

by providing early recognition of 

symptoms and emotional responsiveness, and by attenuating the 

effects of uncertainty. When interviewed, patients with cancer and 

their families say that they value 

clinicians’ enduring characteristics—caring; trust; continuity; and 

feeling known, acknowledged, and 

connected—more than specific 

communication techniques.4,7-11 

Patients’ perceptions of their 

physicians’ overall interpersonal 

style can be quite nuanced,12 yet 

patients’ questionnaire ratings 

about their health care experiences 

tend to reflect an underlying global sense of the physician rather 

than specific behaviors.13 In the 

following discussion, we focus on 

several factors that contribute to 

strong relationships, including 

trust, respect, and mutual understanding about roles and responsibilities, as well as the clinicianrelated factors of self-awareness 

and well-being. 

The patient’s and family’s trust in 

the clinician is a perception that 

the clinician will be present, com

informative, they were allowed to 

participate in the decision-making 

process, and they believed that the 

physician was sensitive to their 

concerns.14,15 However, the relationship between trust and the 

patient’s communication can be 

complex. On the one hand, a 

patient may be more open and 

willing to discuss personal and 

sensitive topics with clinicians 

they trust.16 On the other hand, 

patients who are trusting may feel 

less of a need to seek information 

and be involved in decisions, 

instead leaving these matters to 

the clinician.7 A trusting relationship can both depend on and facilitate communication. Less is 

known about clinicians’ trust of 

patients, but trust arguably must 

be mutual to have a committed 

and functional relationship in cancer care. 

Rapport is a perception of connection with another individual based 

on respect, acceptance, empathy, 

and a mutual commitment to the 

relationship.17 Rapport is accomplished both verbally, by expressing interest in another’s views, discussing shared goals and interests, 

and responding to emotions, as 

well as nonverbally, through 

directly facing another, using 

facial expressions of attentiveness, 

and speaking in an appropriate 

tone of voice.18 A sign of rapport is 

reciprocity of positive affect and 

ships and leads to more sati

ry interactions. 

One of the most important t

cancer care is for the clinici

patient, and family to establ

negotiate, if necessary, their 

respective roles in the relati

Patients and clinicians have 

tations for each other’s role 

behavior in the encounter.20-2

Sometimes the roles are cle

mutually agreed upon at the 

of the interaction, as would 

case when both clinician an

patient prefer greater clinici

control of the consultation a

decision-making. Sometime

expected roles are discrepan

must be reconciled, such as 

both clinician and patient w

more control over the decisi

making process. As mention

Chapter 1, the alignment pro

often successful when clinic

and patient cooperate and co

nate their communication to 

lish mutually agreed upon n

for their relationship. 

Regardless of their preferen

the clinician’s communicati

style, patients and their fam

generally want to be involve

the process of care, be infor

all the treatment options, fee

tened to, and feel that their p

cians know them as people, 

simply diseases.23-25 In order 

involved and to feel underst

patients must be able to effe
communication style, linguistic 

skills (e.g., health literacy), and 

belief in the legitimacy of patient 

participation.26,27 Correspondingly, 

clinicians can facilitate patient 

involvement in the relationship by 

engaging in the following:28-30 

• Partnership building and
 

encouragement 


• Joint agenda setting 

• Active listening 

• Taking measures to ensure 

patient understanding 

• Nonverbal behaviors conveying empathy and warmth 

Some researchers have examined 

congruence between what patients 

with cancer prefer regarding their 

involvement in medical decisions 

and what physicians perceive 

patients’ preferences to be.31,32 

However, few studies have been 

carried out in the cancer setting to 

compare the preferences of clinicians and their own patients about 

each other’s roles in the decisionmaking process. More research 

needs to be conducted on these 

issues, as discrepancies between 

the expectations of a clinician and 

patient for their relationship may 

lead to frustration and misunderstanding. Clarification, open discussion, and accommodation can 

repair misunderstanding,33 but 

often, misunderstandings remain 

unaddressed. 

views and expectations. These factors may explain why clinicians 

are not very accurate judges of 

patients’ preferences, a situation 

further complicated by differences 

in race, language, ethnicity, or 

educational level.34 Alignment of 

clinicians’ and patients’ expectations likely occurs when clinicians 

are more aware of and attentive to 

patients’ needs and when patients 

express their beliefs about the relationship openly. When patients and 

physicians are aligned in their 

preferences for control in the relationship, patients report greater 

endorsement of the physician, satisfaction with care, and intent to 

adhere to treatment.21,35 

To date, little research has examined the effect of clinician wellbeing and self-awareness on communication and healing relationships and the effect of the patientclinician relationship on clinician 

satisfaction, attitudes, and behavior. As noted in Chapter 1, communication requires clinicians’ 

ongoing capacity for attentiveness 

and self monitoring36,37 in order to 

identify patients’ perspectives and 

distinguish them from their own.38 

Clinicians’ ability to be attentive is 

also related to their own wellbeing. Clinicians who report 

burnout or job dissatisfaction also 

report lower quality of clinical 

care and demonstrate decreased 

capacity for empathy.39-48 With 

programs.40,46,49-54 Becau

nicians find relationsh

patients to be a major 

meaning in their work

patient-clinician relatio

likely contribute to hig

isfaction and less burn

turn, higher quality of 

2.2 Exchanging Inform

Patients with cancer an

ilies seek information 

cause, diagnosis, treatm

nosis, and psychosocia

the illness. Attending t

tion needs is importan

help the patient gain k

about his or her illness

develop a strong patien

relationship, to assist p

decision-making, and t

patients’ uncertainty.56-

patients with informati

increase satisfaction,59 

participation in the con

decrease anxiety, and i

ability to cope.60 Patien

cer and their families o

their information resou

only to understand the 

also to find hope.61-63 A 

selected literature on i

exchange in cancer set

sented in Appendix B. 

Important changes hav

in the process of infor

exchange over the pas

decades. Historically, 

20 
been given to patients’ opinions, 

needs, beliefs, values, and preferences. In addition, patients bring 

disease-related information to the 

consultation, often from discussions with other health professionals, lay informants, family 

members, media sources, and, 

especially, the Internet. Thus, 

there is a need to rethink research 

on patient-clinician information 

exchange, which has largely taken 

the deficit model. With a focus on 

insufficient information, the 

deficit model emphasizes that 

patients with cancer want as much 

information as possible64,65 and do 

not receive enough information 

from clinicians.66 However, we 

embrace a process model of information exchange that focuses on 

the reciprocal efforts of both clinician and patient to manage 

information and achieve, even 

negotiate, a shared understanding 

of the medical and personal issues 

underlying the patient’s health 

condition. The wide availability 

of health information on the 

Internet can cause patients to 

become frustrated by information 

“overload” and their inability to 

clearly understand their health 

status and appropriate course of 

treatment.67 Clinicians must help 

patients filter and understand clinical information, a sine qua non 

for informed or participatory 

decision-making.58,68,69 Moreover, 

information content varies accord

• Diagnosis or recurrence: sharing bad news and explaining 

test results 

• Treatment: Interpreting results 

of clinical trials for making 

decisions 

These information-sharing tasks 

are challenging. Related issues 

that are critically important to 

effective information management 

include uncovering the patient’s 

information needs and understanding what the patient knows and 

believes about health, including 

the meaning the patient ascribes to 

the illness. 

2.2.1 Patients’ information needs 

The information needs of patients 

with cancer differ among patients, 

change over time,68,69 vary depending on the type and stage of cancer, and persist throughout the 

cancer care continuum.70 Most 

patients report that they want to 

know as much information as possible about their type of cancer 

and the treatment options71,72 but 

often are overwhelmed by the 

sheer amount of information provided by clinicians, the mass 

media, and the Internet.67 However, 

some patients do not want information and use avoidance as a 

coping mechanism.73 At the same 

time, the family also may be 

requesting information. The difficulty in effectively managing 

do not always appreciate the 

plexity of patients’ and fami

concerns79,80 and thus may n

to the “heart” of the matter. 

absence of perceptual skills 

(Chapter 1) to detect the pat

expressed needs may explai

part why many patients and 

members remain dissatisfied 

the timing and amount of in

tion they are given by clinicians.62,66,75,76,78,81 

As discussed in Chapter 1, a

patients about their informa

needs, providing clear expla

tions, avoiding medical jarg

checking for understanding 

patient-centered communica

behaviors that facilitate effe

information management.81-8

Ideally, when patients perce

they are not getting sufficien

clear information, they shou

questions or express their vi

concerns, actions that typica

elicit more information from 

cians. Correspondingly, clin

should realize that patients w

information and should find 

of eliciting their information 

needs. Asking about inform

needs is especially importan

patients with cognitive defic

limited health literacy, as su

patients may want informati

be less assertive and take m

time with their physicians in 

ting it.84 Health care systems 

also help address the patient
late information

• Multimedia resources that help 

explain complex features of 

disease and treatment options29 

• Educational resources that provide instructions for patients 

and their family members on 

how to use the Internet to get 

the most useful information86 

2.2.2 Understanding what 

patients know and believe about 

health 

Clinicians, patients, and families 

often have very different illness 

representations,87 otherwise known 

as explanatory models,88 or “lay” 

or “common sense” models of 

health and illness.89-91 Illness representations consist of ideas and 

expectations about causality, time 

course, treatment, and prognosis 

and shape how patients respond to 

illness. These representations are 

the ways in which patients make 

sense of and react to their experiences of the illness. However, 

there are often unexplored differences between clinicians’ and 

patients’ illness representations, 

which can lead to misunderstandings and may lower quality of 

care. For example, a patient who 

believes that pain is an inevitable 

feature of cancer may not report 

new painful symptoms, thus delaying diagnosis of a potentially treatable recurrence. Because commu

cultural health care encounters. 

Illness representations are learned 

from a variety of sources, including mass media, the Internet, family, friends, and coworkers.92 

One of the factors contributing to 

differences in patient and clinician 

understanding of health information is that existential aspects of 

illness shape how patients interpret 

and use the information they have. 

Uncovering the meaning of the illness to the patient is an important 

part of the information-exchange 

process because patients with cancer often find that information not 

only helps them to understand the 

disease but also helps them to find 

hope,61-63 to feel known and understood by their caregivers,10 and to 

ascribe spiritual and other meanings to illness.93 This understanding can, in turn, enhance patient’s 

sense of self, peace, and wellbeing. Although patients most 

often prefer to get information 

from their health care providers92 

and trust such information, clinicians should not assume that 

patients have a similar understanding of clinical information, even 

when they are well educated, are 

likely to have greater health literacy, and are familiar with medical 

terminology.94 Hence, an important 

communicative task for the clinician is to uncover the meaning of 

the illness to the patient through 

empathy, active listening, and 

respective illness repre

and to provide more p

cancer care. 

2.2.3 Communicating 

information 

Communicating clinica

challenging and require

cians have skill in offer

tions the patient unders

framing information, an

visual aids.95 Communi

titative information is p

challenging. Patient un

of statistics may be lim

misunderstandings abo

and relative risk or mea

dard deviations, may re

ly concrete interpretatio

Graphical displays, esp

person diagrams, are in

being used to improve 

understanding of statist

the findings of at least 

suggested that patients 

words to pictures.96 No

the content of clinical e

change across the canc

tinuum, but the intende

sharing the information 

well. For example, clin

provide statistics on the 

mammography in detec

in order to persuade a p

have a mammogram. A 

may present informatio

risks and benefits of va

prostate cancer treatme

to have patients articula

22 
mates that are framed in positive 

outcomes (a 60% chance of surviving for five years) rather than 

estimates that are framed in negative outcomes (a 40% chance of 

dying within five years), clinicians 

should frame the information in 

both ways to avoid having the 

information be perceived as overly 

hopeful or pessimistic. 

In short, communicating clinical 

evidence is more than just “stating 

the facts.” Patients make subjective 

sense of the information through 

their own interpretive lens, and 

these interpretations are influenced 

by past experiences, their own illness representations and beliefs,90,97 

the experiences of others, their 

emotional states, and their goals. 

Patient-centered communication 

skills that can help clinicians manage clinical information include 

the following: 61,98 

• Use everyday language as 

much as possible 

• Repeat and summarize 

• Ask patients to restate information as a way to ensure they 

understand 

• Encourage patients to ask
 

questions 


• Engage in active listening 

• Allow adequate time for discussion with the patient 

• Be honest 

whelmingly endorse honest disclosure of a cancer diagnosis,99 the 

delivery of bad news continues to 

be stressful for clinicians and ineffective and/or traumatic for patients 

and their families.100 Patients report 

feeling upset or overwhelmed after 

they hear the devastating news of a 

cancer diagnosis; such anxiety 

makes assimilation and recall of 

further information difficult. 

Although no communication intervention can eliminate the lifechanging impact of a cancer diagnosis, the effective delivery of bad 

news can at least help patients 

become the following: 

• Better informed 

• More motivated to follow 

through with further evaluation 

and treatment 

• Less emotionally distressed 

• Better able to ask questions 

and participate in the clinical 

encounter 

• Better prepared to make treatment decisions 

• Better able to navigate the 

health care system 

• Clear about the level of uncertainty of the diagnosis 

The difficulty in managing bad news 

may be further compounded by a 

patient’s psychological and emotional factors, cognitive impairment, and low health literacy.94 

Clinicians, too, have conside

difficulty delivering bad new

passionately and clearly. Des

large body of literature with 

ingly sensible recommendati

delivering bad news, and an 

increasing number of course

students and residents, clinic

often deliver diagnostic infor

without prior training or sup

Many physicians report havi

overwhelmed and traumatize

their early experiences at del

bad news.102 They may know 

bad news should be delivered

they may be unable to carry 

process effectively because o

own discomfort, fear, anxiety

and lack of forums to deal w

their own feelings. Correspon

it is not surprising that the po

press and the medical literatu

includes patient reports of co

impersonal, blunt, evasive, ta

indirect, jargon-laden, and po

timed delivery of bad news. 

Clinicians’ actions at times f

their needs to reduce their ow

anxiety and uncertainty and 

the visit to closure, rather th

address such patient needs a

desire to understand and be 

stood, to gain emotional sup

and hope, and to be reassure

they are getting the best avai

treatment.105 

Uncertainty is implicit in dis

sions of prognosis. Patients 

ally state that they want an a
asked what information they wish 

to hear before it is disclosed, as 

well as when the disclosure should 

take place.96 However, physicians’ 

prospective estimates of prognosis 

are usually more favorable than the 

actual course of the disease,108 and 

many intentionally exaggerate 

prognosis when communicating 

with patients and families,109 probably because of their own discomfort.110 Correspondingly, patients 

frequently report not knowing their 

prognosis111,112 or they overestimate 

their prognosis, even when they 

have been given accurate information.111,113-119 As with bad news, cultural factors may be paramount. 

One recent review of interventions 

designed to help clinicians better 

inform patients about their prognoses and plan for end-of-life care 

indicated that most clinicians have 

not been successful with this task, 

perhaps because of inadequate 

attention to communication 

factors.120 

2.3 Responding to Emotions 

The threat, diagnosis, and treatment of cancer elicit a range of 

emotions in patients that include 

fear, sadness, anger, anxiety, and 

depression. Often, there are corresponding reactions in friends and 

family members. In clinical 

encounters, patients and families 

express these emotions in a variety 

of ways: fear,121 humor,122,123 nerv

It is particularly important to recognize and respond to patients’ 

emotional states, given that depression, anxiety, and adjustment disorders have major effects on the 

quality of life of patients with cancer.126-129 These emotions also can 

affect response to chemotherapy130 

and the experience of pain.131 

Clinicians can appropriately and 

directly address patients’ emotional 

distress by using verbal expressions of understanding, legitimation, empathy, and support, which, 

in turn, can lead to improvements 

in physical symptoms,132 alleviate 

the negative effects of inadequate 

social support,133 and foster a perception of being understood.134 

Moreover, by recognizing serious 

levels of emotional distress, anxiety, or depressive disorders, clinicians can prescribe medications or 

offer referral for psychotherapy 

that could directly improve the 

patient’s well-being,2,6,135 lead to 

mobilizing social support,136 and 

increase the likelihood that cancer 

treatment is completed. Attention 

to family members’ emotions can 

prevent caregiver burnout. Further 

discussion and a literature review 

on recognizing and responding to 

emotions in cancer settings can be 

found in Appendix C. 

Given the magnitude of patients’ 

and family members’ emotions 

generated by a cancer diagnosis, 

clinicians should be able to recognize a patient’s emotional state, ask 

patients’ emotional cue

they effective at uncove

patients’ fears and conc

Fewer than one-third o

ly distressed patients ar

as such by their physic

general, clinicians rarel

conversations about em

correspondingly, some 

learn not to bring up th

all. Part of the difficult

while some patients ex

tions explicitly (“I’m fr

that ...”), others are mo

disclose physical symp

psychological problem

others reveal their fears 

cerns indirectly80 or not 

unless prompted by the 

These direct and indire

emotional distress are 

ignored, displaced, or 

rather than being met w

empathic responses tha

edge cognitive and aff

dimensions of the pati

ence.141,142 Paradoxicall

ance can be counterpro

Although reassurance 

reduces anxiety initiall

may rebound to even h

after clinicians’ attemp

sure, especially if the p

as if his or her concern

addressed superficially 

clinician did not provi

quate rationale for reas

Effective responses to 

expression include the 

24 
• Empathy: “This is making you 

both worried and sad, is that 

right?” 

• Tangible help: “I think I can 

help by....” 

In contrast, less effective responses are asking leading questions, 

focusing on the physical aspects 

of health, and prematurely giving 

advice and reassurance. The 

absence of communication skills 

described in Chapter 1, as well as 

lack of time, environmental noise, 

and lack of privacy can be additional barriers to clinicians’ validation of and responsiveness to 

patients’ emotions.147,148 Educational 

interventions can help clinicians 

address patients’ emotional 

needs149,150 and the effects of interventions can be long-lasting.151 

Before leaving the discussion of 

responding to patients’ emotions, it 

is important to recognize that clinicians, too, experience a variety 

of emotions as they treat their 

patients, especially when confronting patients with life-threatening illnesses and patients for 

whom treatment is not always 

effective.40,43,47,48,152 Clinicians 

should have self-awareness of their 

emotions and must acknowledge 

and manage their emotions effectively; an important aspect of managing emotions is finding the right 

balance between involvement and 

distance to provide appropriate 

Unexamined negative emotions, in 

particular, can create distance 

between clinicians and patients 

that may be interpreted by patients 

as lack of caring. 

2.4 Managing Uncertainty 

We separate management of uncertainty from information exchange 

and decision-making because 

information, emotional support, 

and mutual understanding between 

clinicians and patients do not necessarily mean a reduction of uncertainty. Uncertainty is particularly 

salient in cancer care because the 

outcomes of cancer usually occur 

closer to the time of diagnosis 

(e.g., within five years) and cancer 

is often curable; in contrast, other 

major causes of death, such as diabetes, emphysema, and coronary 

artery disease, have more protracted courses and are usually not 

eradicated. According to 

Mishel,153,154 uncertainty in illness 

occurs when a person perceives 

aspects of the illness, treatment, 

and recovery as inconsistent, random, complex, and unpredictable. 

Uncertainty can have negative consequences, such as emotional distress, a loss of sense of control, and 

lower quality of life.155,156 However, 

maintenance of uncertainty may 

have self-protective value for some 

patients and families by allowing 

space for hope.157 Although uncertainty may stem from a lack of 

may be interpreted in many 

(Is no change in tumor mark

level a positive sign?). 

Uncertainty is particularly s

in discussions of prognosis, 

usually involve the presenta

statistics. Many patients hav

culty understanding statistic

mates and often interpret the

precise predictions. It is som

difficult to convey that statis

estimates are no more than a 

abilistic structuring of uncer

Furthermore, physicians hav

been perceived to have an ex

sive need for certainty158 and 

maintaining an illusion of ce

ty.159 Few empirical studies h

focused on the effect of shar

uncertainty with patients an

lies, and no study has been 

ic to cancer settings. Some 

vignette studies in primary c

settings suggest that express

clinician uncertainty in the f

“I don’t know” or “Let’s see 

happens” or the use of vagu

guage may have detrimental 

effects on patient confidenc

In other studies,162 however, 

expressions of uncertainty in 

context of an otherwise pati

centered style correlated wit

improved patient satisfactio

Patient-centered communic

should not only reduce unc

ty but also help patients wi

cer manage uncertainty.68 In 

situations, patients apprecia
uncertainty can improve understanding and probabilistic thinking, help maintain a positive outlook on future treatments and 

developments, and engage 

patients in vigilant self-monitoring for emerging symptoms. 

These interventions may improve 

communication and quality of 

life. One cognitive-behavioral 

intervention for patients with 

breast cancer, for example, 

improved cognitive reframing, 

cancer knowledge, communication skills, and coping.153 Similar 

interventions for men with 

prostate cancer led to improved 

psychological, sexual, and urinary 

functioning after prostatectomy.163 

A similar intervention led to better quality of life for men who 

chose “watchful waiting” without 

treatment.164 Internet resources 

may also help patients manage 

uncertainty, especially when the 

information and support received 

is perceived to be trustworthy and 

of high quality.165 In addition, 

health care systems can greatly 

assist the management of uncertainty by providing patient education resources and access to cognitive interventions. 

Although theories about the management of uncertainty have been 

proposed and psychological interventions based on those theories 

have been successful, little is 

known about what can be done as 

order to handle uncertainty effectively, yet it is not clear whether 

these resources can be provided 

during routine clinical care or if 

specialized psychological interventions are necessary. Clinicians’ 

actions to reduce uncertainty or 

provide reassurance have the 

potential to backfire, further raising 

patient anxiety and distrust.143-146 

These issues are paramount in the 

survivorship phase and will affect 

an increasing number of patients, 

including patients who do not have 

a guarantee of cure on the immediate horizon or who have oncogenetic mutations. These issues also 

affect patients for whom the management of long-term sequelae of 

treatment may introduce new 

uncertainties. 

2.5 Making Decisions 

Decision-making is a communicative task that is important in all 

phases of the cancer care continuum. A high-quality decision is one 

that is based on the patient’s values 

and understanding of the evidence 

and rationale for the decision. To 

achieve a high-quality decision, the 

patient’s needs, values, and preferences should be articulated and 

taken into account. However, 

achieving the best decision possible 

is often difficult for several reasons: 

• Clinicians are often unaware 

of the patient’s needs, values, 

and preferences 

health 

• Patients are often n

with the clinical re

supporting a prefe

An additional complic

process is that patients 

with respect to their pr

degree of involvement 

making,32,64,65,166-170 Clini

often unaware of patie

ences for involvement3

patient’s preferred leve

ment and decision may 

during the course of th

tion or from one visit t

Most of the literature o

making assumes a dya

clinician relationship, 

fact that most importan

in cancer care involve 

other accompanying fa

ber. A detailed literatu

decision-making in can

settings is in Appendix 

We find the model of t

decision-making propo

Charles et al.173 to be a 

useful starting point be

helps distinguish activ

participation from con

sion-making. The mod

three types of decision

that lie along a spectru

• Paternalistic: clini

treatment 

• Shared: clinician a

together decide tre

26 
making process differs with 

respect to the degree of patient or 

clinician control over the decision, 

each type proceeds through the 

same three stages—information 

exchange, deliberation, and making the final decision. Regardless 

of who is responsible for the final 

decision, the process is one that is 

ideally characterized by mutual 

engagement and participation at 

both the information-exchange and 

deliberation stages. Information 

exchange involves the clinician 

and the patient seeking and giving 

their respective viewpoints on the 

patient’s health condition. The clinician discusses clinical findings, 

options for treatment, the procedures involved, and his or her 

experience with these conditions. 

The patient discloses his or her 

needs, questions, preferences, concerns, and his or her knowledge 

about health and treatment. 

As discussed in Chapter 1 and earlier in the section on information 

exchange, clinicians and patients 

may need to help one another be 

accountable in the informationexchange process. If information 

presented by a clinician is difficult 

for the patient to understand or 

seems counter to what the patient 

knows, an educated, activated and 

motivated patient would normally 

ask questions and offer his or her 

own perspective.26 However, 

patients are often passive and 

intimidated by the clinical setting. 

er the reasons for the patient’s treatment preferences, which are often 

not readily apparent. For example, 

clinicians often have little understanding of patient’s reasons to 

forego mainstream therapy, and 

these reasons can be quite varied, 

including having a close friend/relative who died from cancer when 

receiving conventional treatments, a 

need for control, fear of side effects 

of conventional treatments, poor 

communication with clinicians, and 

expected benefits of treatment. As 

they work toward mutual or shared 

understanding of the situation during the deliberation stage, clinician, 

patient, and family identify similarities in their viewpoints and resolve 

any differences. In short, even if the 

final decision is made unilaterally, 

the decision-making process itself 

should still have been characterized 

by active engagement by all parties 

in the information-exchange and 

deliberation stages. 

In most cases, the quality of the 

decision reached will depend on 

how well four tasks were accomplished: 

• Perspectives of both clinician 

and patients were voiced and 

understood 

• Differences were reconciled 

satisfactorily 

• Mutual agreement was 

achieved regarding the best 

course of action 

critical for effective decision

ing. For example, some rese

indicates that the greater the 

between the preferences of 

patients with breast cancer t

involved and their perceptio

actual involvement, the less 

sional regret and greater sat

tion with care.173,175 Patients’ 

ations of care are better pred

by perceptions of having ha

shared role in decision-mak

than by their initial preferre

role;173,176 this may in part be 

their feelings of being invol

the process. Physician suppo

patient participation can inc

the participation of patients 

cancer,29,177 foster a sense of 

a choice of treatment, and le

greater satisfaction with car

This adaptation of the mode

Charles et al.173 is useful in t

makes an important distinct

between patient involvemen

decision-making process, w

number of studies indicate i

positive feature of patient-ce

care, and the issue of who a

responsibility for making th

sion. This model would acco

for findings indicating that m

patients want to be involved 

decision-making, want to kn

of their options for treatmen

want the decision to take int

account their needs and valu

Yet, many of these patients 

choose not to have sole or e

partial responsibility for the 
the patient-clinician interaction, 

and not the patient’s role per se in 

deciding treatment, is arguably the 

most important factor affecting the 

quality of decision-making. 

Specific communication strategies 

that could facilitate patient/familyclinician communication about 

treatment include the following: 

• Setting an explicit agenda 

• Listening actively 

• Checking understanding 

• Offering opportunities for 

involvement 

• Endorsing patient participation 

in discussions and the decision 

• Accommodating patients’ 

preferences 

• Communicating empathy 

and warmth both verbally 

and nonverbally 

Health care systems also have a 

role in supporting decision-making 

by facilitating access to information and providing decision aids 

and other resources. Decision aids, 

in the form of booklets, prompt 

sheets, video recordings, and interactive Web-based formats, can help 

patients understand and take an 

active role in decision-making.178,179 

Decision aids increase patients’ 

knowledge about options, lower 

decisional conflict, and reduce the 

proportion of patients remaining 

2.6 Enabling Patient 

Self-Management 

A sixth function of communication 

in cancer care deals with the practicalities of following through with 

care, helping patients to enhance 

their ability to solve health-related 

problems and to take actions to 

improve their health. This function 

is somewhat different from information management because it 

comprises recommendations 

(‘should do’ communication), 

instruction (‘how to’ communication), and advocacy (‘can do’ communication). Enablement 180-182 

refers to patients’ perceived ability 

to self-manage important aspects 

of their illness, which includes 

their ability to find information 

about the illness, cope with treatment effects, and seek appropriate 

care when needed. Implicit in 

enablement is the ability to adhere 

to treatment, navigate the health 

care system, and garner 

resources.181-183 Enablement 

includes things that clinicians can 

do for patients to remove barriers 

to self-management, as well as 

ways clinicians can help patients 

be more autonomous and capable 

of caring for themselves. The concept of self-management was 

advanced by Bodenheimer et al. 

and has been formalized into a 

chronic care model to be applied 

in primary care settings.184,185 

Enablement includes both things 

that clinicians can do for patients 

has been expanded and 

chronic disease manag

primary care settings.1

chronic care model em

collaboration in which 

and the team of health 

als each identifies prob

sets goals. Clinicians p

information but also te

how to gain access to 

knowledge. Education 

mation may come dire

the health professional 

from other patients (in 

tings), peers, or family 

Each contributes exper

shares responsibility fo

solving, the achieveme

outcomes and caregivi

trast to a paternalistic 

professionals help the 

make informed choice

understand that their re

is to help patients find 

motivation rather than 

course of action. The c

role is to teach problem

rather than solve all pr

patients—with an expl

enhancing self-efficacy

Self-management leads 

improved health outcom

reduced hospitalization

with chronic disease.186 

the idea that patient-cli

munication can enhanc

agement is relatively ne

settings. Patient-clinici

cation about self-mana

focus on any number o

28 
2.6.1 Advocating for patients and 

helping to navigate the health 

care system 

Patients often need advocacy, or 

actions taken on their behalf. 

Advocacy often includes interactions between clinicians and others 

within as well as outside the health 

care system. Some examples of 

advocacy are contacting insurance 

companies to provide needed care, 

personally coordinating care with 

another specialist, and making sure 

that a terminally ill patient has 

adequate home care services. 

Advocacy also includes interactions with the family to support 

the patient’s healing efforts. 

Navigation is a special form of 

advocacy. More so than with care 

of other illnesses, cancer care typically requires that patients navigate a complex health care system 

in which they interact with a variety of health professionals performing specialized services at 

multiple locations. Navigating the 

health care system is particularly 

challenging in the trajectory from 

detection of cancer to initiation of 

treatment but is also important in 

accessing services related to survivorship issues and end-of-life 

care. In some settings, specially 

trained “navigators” assess 

patients’ needs and, in collaboration with the patient, develop a 

ing their effectiveness or costs. 

Some ways in which clinicians can 

contribute to navigation include 

the following: 

• Help patients obtain confirmatory testing for suspected cancer in a timely fashion 

• Tell patients how to get to a 

specialist’s office 

• Explain clearly about when 

and with whom to follow up 

• Arrange referrals for psychotherapy, support groups, 

and/or social work 

• Coordinate care among specialists for hospitalized 

patients 

• Provide palliative/end-of-life 

care or direct patients to 

resources for such care, as 

appropriate 

2.6.2 Supporting patient 

autonomy 

Autonomy requires motivation 

and self-efficacy. Motivation has 

been studied in other settings, 

using self-determination theory to 

predict and influence patients’ 

motivation for change. Self-determination theory suggests that 

autonomy-supportive clinician 

behaviors tend to foster patient 

motivation.188 In contrast, when 

clinicians are directive and controlling, motivation tends to 

consider choices rather than 

ing a premature decision. T

approach has been applied 

success to smoking cessatio

weight loss, adherence to tr

ment, and exercise, topics t

related to cancer prevention 

quality of life.28,189,190 Autono

supportive clinician behavio

also enhance a patient’s sen

self-efficacy,186,191 but, as is 

case with motivation, self-e

is a prerequisite for enablem

but is not synonymous with 

concept. 

While navigation is a form o

advocacy for the patient, ac

tion is a form of self-advoca

the patient. Patient activatio

ventions,192 however, have m

focused on training patients 

how to get their questions 

answered and how to partici

decision-making. Interventio

help patients with the follow

• Find their way through t

health care system 

• Obtain access to the bes

cians for their particular 

tion 

• Recognize gaps and lap

care and bring them to c

cians’ attention 

• Improve adherence to tre

• Become educated consu

of health care 
selves. In addition to motivation 

and confidence (self-efficacy), 

patients also need the knowledge, 

skills, and resources to be able to 

follow through. Clinicians still 

need to provide recommendations, 

instruction, advocacy, and support. 

Even if a patient feels empowered 

and enabled, situations with regard 

to the patient’s illness change over 

time. Recommendations should be 

clear, with nontechnical language 

and simple sentence structure. 

Recommendations should be 

accompanied by recall-promoting 

behaviors such as repetition, summarization, categorization, and 

asking the patient to repeat complex recommendations so that it is 

clear that they understand.193-199 

Instruction helps patients do things 

for themselves. Instructions should 

include clear explanations on ways 

the patient should manage pain 

and other symptoms and how to 

follow through with a mutually 

agreed upon plan that might 

include scheduling medications, 

having an x-ray done, or talking to 

a social worker. Instruction also 

can include telling the patient and 

the family how and when to contact the clinician, how to make 

sure that the right people are present during family meetings, and 

what websites will provide relevant information. 

ple and organizations. In particular, 

health care systems have an important role in supporting patients’ 

self-management by providing 

easy access to personnel, experts, 

programs, and media that can 

guide and inform self-management. Some supportive resources 

that have been discussed in the literature include the following: 

• Use of lay health educators200 

and interactive media201 to help 

patients be more proactive in 

controlling pain and other cancer-related symptoms 

• Training patients how to use 

the Internet more effectively to 

access health information202 

• Sponsoring of communitybased programs for the management of cancer-related 

symptoms203 

• Assistance for patients regarding the use of complementary 

and alternative medicine204 

• Toolkits for learning selfadvocacy205
 

Few studies of enablement per se 

have been carried out in cancer 

settings, and navigation studies are 

just now being conducted. It is 

clear, though, that enabling 

patients to take a more active role 

in managing aspects of their own 

health care should be a focus for 

future communication research. 

and health outcomes. F

healing relationships e

the importance of mut

rapport, understanding

mitment, as well as ag

about each others’ role

tations as both require

results of effective com

Exchanging informatio

sizes the importance o

ing patients’ informati

integrating clinical inf

with the patient’s illne

tations (explanatory m

acknowledging both th

and process of informa

exchange, recognizing 

ease-related informatio

more available through 

Internet, communicatin

tic information accurat

also providing hope, a

ing barriers related to 

literacy and poor unde

statistical information. 

Responding to emotion

clinicians to elicit pati

tional distress; commu

understanding of the p

emotions to him or her

respond with legitimat

tion, empathy, and sup

Managing uncertainty 

that uncertainty often c

eliminated but can be m

providing information, 

and cognitive strategie

30 
ment of the patient and family in 

the information exchange and 

deliberation stages of the decisionmaking process and the identification of the person responsible for 

the final decision. 

Lastly, enabling patient self-management involves advocacy for the 

patient, including navigating the 

patient through the health care system; supporting patient autonomy; 

and providing guidance, skills, and 

access to resources. 

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38 
T

he relationship between 

patient-clinician communication and outcomes of care is, 

from a conceptual standpoint, one 

of the least developed areas of 

communication research. Much of 

the current literature on cancer 

communication focuses on immediate, proximal outcomes of communication, such as whether 

patients recall clinician recommendations, and intermediate outcomes, such as whether patients 

follow through with treatment 

(Table 3.1). The outcomes of greatest relevance to patients and their 

families, however, are health, survival, and quality of life. Survival 

Table 3.1 Pathways from Patient Needs to Communication to Outcomes: Mediators 

Communication outcomes (also mediators of 

relationships between communication and 

intermediate and primary outcomes) 

•	 Strong patient/family-clinician relationships 

(trust, rapport, respect, patient participation in 

the visit, involvement of family and caregivers, 

patient feels known and understood) 

•	 Effective information exchange (e.g., patient 

asks questions) 

•	 Validation of emotions (e.g., clinician expresses 

empathy) 

•	 Appropriate acknowledgment, understanding, 

and tolerance of uncertainty 

•	 Patient participation in decision-making 

•	 Patient self-management, navigation of health 

care system, and coordination of care 

Intermediate outcomes (also mediators 

between proximal communication outcomes 

and primary outcomes) 

•	 Patient knowledge and understanding 

•	 Access to care 

•	 Therapeutic alliances 

•	 Emotional self-management 

•	 Family/social support and advocacy 

•	 High quality of medical decisions (e.g., 

informed, concordant with patient values, 

mutually endorsed) 

•	 Patient agency (self-efficacy, empowermen

and enablement) leading to improved 

treatment adherence, health habits, and s

care 

Health outcomes 

•	 Survival and disease-free survival 

– Cancer prevention 

– Early detection of cancer 

– Accurate diagnosis 

– Completion of evidence-based treatment 

– Maintenance of remission 

•	 Health-related quality of life 

– Functioning: cognitive, physical, social, and 

– Well-being: physical, emotional, energy 

– Health perceptions 

•	 Other aspects of suffering (meaning, 

spirituality, etc.) 

Societal outcomes 

•	 Cost and utilization of health services 

•	 Disparities in health and health care 

•	 Ethical practice (e.g., informed consent) 
disparities, are important on a population level. Many of the mediators and moderators between 

communication behavior and these 

outcomes and between intermediate and primary health outcomes 

are poorly understood. 

Broadly speaking, the relationships 

between communication and survival (and disease-free survival) 

are likely to be mediated by patient 

access to and completion of recommended health care. Markers of 

disease such as blood tests, radiographic studies, and physical 

signs are commonly used to judge 

the effectiveness of treatments and 

are sometimes used as surrogate 

markers for survival. Although disease markers and adherence to 

treatment have been used in communication research in the settings 

of diabetes, hypertension, and 

other chronic illnesses,1 these 

markers have been used much less 

frequently in communication 

research in the cancer setting. 

The construct of health-related 

quality of life (HRQOL) is increasingly being used to measure subjective outcomes of care (Table 3.2). 

HRQOL refers to the impact of an 

individual’s health on his or her 

ability to function and on his or her 

perceived well-being, in physical, 

mental, and social domains of life. 

The functioning aspect of HRQOL 

includes basic activities, such as 

self-care, cognitive ability, and ability to perform at work, and the 

extent to which one is able to interact with family and friends. The 

well-being component of HRQOL 

relies almost exclusively on the perceptions of the patient and is therefore more subjective than the 

functioning aspect. Included in the 

well-being component is the degree 

to which the person has symptoms 

(physical well-being); feels happy, 

sad, depressed, or anxious (emotional well-being); and feels energetic or lethargic. Comprehensive 

HRQOL measures address multiple 

domains of function and wellbeing. Cancer can affect nonHRQOL domains as well, such as 

earning potential and standard of 

living, but the impact of communication on these domains is more 

gg, 

Social Interacting with f

family 

Role Performing job, h

hobbies 

Symptoms General Pain, nausea, fati

weakness 

Disease specific Itching, breathles

constipation, urin

frequency 

Emotional Anxiety, depressio

hopefulness (bod

Social Enjoying friends a

(Spiritual) (Personal meanin

transcendence) 

General health Self-reported ove

perception 

*Items in parentheses are encountered less frequently. 

speculative.2,3 Elements 

that have been assessed 

nication studies in canc

cancer settings include 

and social well-being, a

cases, symptoms and p

tioning.4,5 Very few can

nication studies have fo

effects of communicati

tal outcomes such as co

health care disparities. 

In this chapter, we disc

between communicatio

outcomes, intermediate 

and health outcomes, w

lar attention to the vari

ways through which th

communication functio

described in Chapter 2 

improved health. The c

40 
between improved communication 

and health outcomes. 

3.1 The Fundamental Task: 

Explaining the Link between 

Communication and Outcomes 

In this chapter, we discuss ways in 

which communication can lead to 

improved survival and quality of 

life either directly or through the 

mediating effects of proximal and 

intermediate outcomes. However, 

much of what we present is speculative, because very little is known 

about the mechanisms by which 

communication affects health outcomes. It is clear, however, that in 

some instances patient-clinician 

communication directly improves 

well-being. For example, a clinician who is encouraging and reassuring and offers clear, 

understandable explanations may 

help an anxious patient in the hospital to have a lower level of anxiety, sleep better, and have an 

improved appetite immediately 

after the clinical encounter. 

However, in most situations a more 

complex series of mechanisms 

links communication to health outcomes.6 Collectively, these links 

constitute particular pathways to 

better health through immediate 

outcomes such as greater mutual 

understanding, trust, and patient 

involvement in decision-making 

and through intermediate outcomes 

such as changes in patient health 

for a particular observed outcome. 

A clinician’s efforts to inform a 

patient about the benefits of treatment can increase the likelihood 

that the patient adheres to a potentially curative treatment regimen 

through several pathways. Those 

pathways might be mediated by 

increased trust and/or increased 

understanding. To study whether 

these pathways explain an effect of 

communication on health outcomes 

would require measures of the purported mediators: information giving, trust, understanding, and 

adherence. Although the cancer 

communication literature includes 

relatively few examples of studies 

in which mediation hypotheses 

have been tested, such hypotheses 

have been examined in communication studies in other settings.7 

Future studies should include 

measures of the elements necessary 

to establish whether a proposed 

factor is indeed a mediator of 

patient-clinician communication 

and health outcomes (Figure 3.1). 

Consider one of the few studies in 

which patient activation interventions have been evaluated in cancer 

settings. Oliver et al.8 examined the 

effects of interventions in which 

patients were coached to ask questions about the management of 

cancer-related pain. Patients in the 

activation group reported less cancer-related pain at follow-up than 

did patients in the control group. 

Changes were not mediated by 

effects of the intervention on 

patient-clinician communica

Did the intervention improv

patient’s information-gather

skills so that he or she knew 

to self-manage pain more ef

tively? Did the intervention 

mote a sense of self-efficacy 

confidence to use existing k

edge? Did the intervention l

patient to disclose more info

tion about the pain so the cli

could provide a personalized 

management plan to which t

patient could adhere more e

Without evidence of mediati

tors, we can only speculate a

why a patient intervention le

improved health. 

Before discussing pathways 

link patient-centered commu

tion to outcomes, we should 

acknowledge some controve

philosophical and theoretica

issues that are often embedd

the discussion of the relation

between patient-centered co

nication and outcomes. First

ions differ regarding whethe

communication is a means t

end or is simply an end itsel

instrumental viewpoint hold

communication is considere

important only when it can b

linked to changes in interme

or distal outcomes. Alternati

the deontological viewpoint 

that communication can be c

ered to be an important featu
behaviors may improve some outcomes but worsen others. Patients’ 

perspectives about the quality of 

care (e.g., as reflected in satisfaction measures) are particularly 

problematic because the clinician 

behaviors that enhance patient satisfaction are sometimes distinct 

from those that improve health outcomes. Patients who value patientcentered communication and who 

trust and endorse their physicians 

may be no more satisfied than 

patients who do not.10 In some situations, improved patient satisfaction may even mask deficiencies in 

other domains of practice. For 

example, patients who are more 

satisfied with their care sometimes 

have poorer intermediate outcomes, such as less healthy behavior, as indicated in a study in which 

diabetic patients who were more 

satisfied with their care maintained 

poorer weight control than did less 

satisfied patients.11 Also, some 

forms of active patient participation, such as question-asking and 

assertiveness, may produce more 

friction in the patient-clinician 

relationship, which, in turn, may 

decrease patient satisfaction.12 Yet, 

active participation in communication may result in better understanding and self-management. We 

would argue that, in these circumstances, patient activation was not 

the problem; rather, the patient 

may have achieved better clarity 

about his or her own values, and 

communication are many and, as 

noted in Chapter 1, may differ 

based on patients’ and clinicians’ 

values and goals. Moreover, some 

outcomes, such as satisfaction with 

care, may work against others, 

such as healthier behaviors. 

Communication, outcomes, and 

some mediators of the two are 

complex constructs, and each 

desired outcome will be affected 

by certain domains of patient-centered communication more than 

others.13 Ideally, relevant health 

outcomes should be defined 

through dialogue between patient 

and clinician. In this way, patient 

preferences can be clarified and the 

clinician can avoid mistaking a 

self-defined “good outcome” for 

what the patient really wants, as 

well as avoiding confusion of true 

disagreements in values or intentions with “poor adherence.”14 

3.2 A Conceptual Model of 

Communication and Outcomes 

The pathways linking the effects of 

communication with outcomes 

have not been explored in detail, 

but studies on communication in 

both cancer and noncancer settings 

suggest several common mediating 

pathways (Figure 3.1). By mediation, we refer to the steps between 

two components of a causal pathway that are necessary for proceeding from one level of the pathway 

to the next. Proximal and interme

in Figure 3.1, are comp

larger pathways that sta

communication and en

most distal outcomes. M

may involve one, two, 

more steps, but the con

model shown here is si

illustrate two steps betw

munication act and dist

and societal outcomes. 

ways may terminate at 

intermediate outcomes 

ble links can be found 

steps B and C, but evid

ing for step D or F (Fig

At the top of the conce

are patients’ and famili

related communication 

which include the follo

• Development of a 

relationship 

• Access to disease-

information 


• Response to their e

• Help with decision

and management o

tainty 

• Being empowered 

of self-care 

Although some of thes

be met without involvin

nication with clinicians 

we will focus on the ne

require some form of c

munication, whether en

based, asynchronous, o

42 
Link E suggests that sometimes 

communication can have a direct 

therapeutic effect on patients and 

families. For example, by providing 

information that a test result is normal, a clinician may directly reduce 

anxiety and thus contribute to 

improved HRQOL. In contrast, 

links B through F suggest that the 

pathway between communication 

and outcomes is mediated by a more 

complex series of steps. For example, a patient with breast cancer 

who is reluctant to take tamoxifen 

may first need to feel empowered 

to ask questions during a clinical 

consultation (a communication 

A 

B 

C 

D 

E 

F 

Communication Between Clinicians and Patients/Families 

Fostering healing relationships, exchanging information, responding to emotions, 

managing uncertainty, making decisions, enabling patient self-management 

Proximal Communication Outcomes 

Mediators of the relationships between communication 

processes and intermediate and health outcomes 

Intermediate Outcomes 

Mediators of the relationships between communication 

outcomes and health outcomes 

Health Outcomes 

Survival, health-related quality of life 

behavior). In response to the 

patient’s questions, the clinician is 

more likely to provide information 

about the overall benefits compared 

with the risks in a way the patient 

understands. The clinician’s provision of information leads to greater 

trust (a proximal outcome) and a 

greater willingness of the patient to 

follow through with recommended 

therapy (an intermediate outcome), 

which, in turn, may affect survival. 

However, development of the 

patient’s trust in the clinician and 

the health care system may involve 

not only the provision of information but also other kinds of commuG
 

nication behaviors, such as e

thy and asking for the patien

spective.15 Furthermore, the 

establishment of trust may fa

future communication about 

ent topics in different contex

thus, the effects of communi

are both recursive (link G, Fi

3.1) and cumulative across ti

The first set of mediators con

of proximal outcomes of com

cation, depicted by pathways 

include link B (Figure 3.1). T

step is explicit in the causal p

way because one should not 

assume that the performance 

communication task—the ex
excessive jargon or if the patient 

forgets, misunderstands, or misinterprets the clinician’s statements. 

Patients also vary in how they interpret emotional messages. A statement intended to convey empathy 

(e.g., “This must have been difficult 

for you.”) may be comforting to 

one patient but be experienced as 

insincere or patronizing by another. 

The social, psychological, and 

demographic factors that influence 

the pathway between communication and proximal outcomes is discussed in greater detail when we 

describe moderators of the relationships between communication and 

outcomes. 

The second set of mediators comprises at least seven pathways that 

form important steps between 

communication and health outcomes, providing improvements in 

the following: 

• Access to care 

• Patient knowledge and shared 

understanding 

• Therapeutic alliances (i.e., 

patient and clinician commitment to the relationship) 

• Emotional self-management 

• Family/social support and 

advocacy 

• Quality of medical decisions 

(e.g., informed, clinically 

sound, concordant with patient 

values, and mutually endorsed) 

habits, and self-care, which, in 

turn, can contribute to healing and 

reduced suffering. 

We do not imply that these are the 

only mediators of these relationships. We propose these pathways 

as a conceptual starting point and 

will describe them in greater detail. 

It must be emphasized that the relationships between intermediate outcomes and health outcomes 

comprise a vast body of literature 

encompassing adherence, social 

support, and health services delivery. Moreover, the relationships 

between adherence, social support, 

and treatment outcomes are not 

straightforward. For example, 

adherence to ineffective therapy 

may have positive benefits such as 

lowered anxiety and symptoms, and 

lack of adherence to recommended 

therapy with serious side effects 

may involve value-driven tradeoffs 

between quality of life and survival. 

There is a large body of literature 

on social support and health, yet the 

mechanisms whereby social support 

confers improved well-being are 

poorly understood but likely involve 

neurohumoral, psychological, and 

instrumental factors.16 Also, social 

support can affect adherence. We do 

not attempt to provide a survey of 

this literature, but it is important to 

mention these factors here in anticipation of a more detailed discussion 

later in this chapter. We also 

acknowledge that the pathways 

sometimes are bidirectional. For 

3.2.1 Improving acces

Helping patients get th

need is the first pathwa

communication can im

health. Access to care i

large percentage of Am

especially racial and et

ties, individuals of low

nomic status, and indiv

low health literacy.17 So

of poor access are due 

insurance and availabil

ices, but other aspects a

ble through patient edu

patient navigation prog

Encouraging patients to 

riers to care, enabling p

take the first steps in ga

to health services, and 

collaboration among he

sionals are three comm

activities that can help 

the care that they need

nicians must not only c

the need for a test, trea

referral; they must also 

patients actually get su

This pathway is accom

marily through links B

(Figure 3.1): link B sug

informative communic

patients understand the 

that is needed; link C c

understanding to utiliza

appropriate procedures 

ments; and link D conn

tion of appropriate serv

improved health. Howe

44 
move through a complex health 

care system. 

Health care systems, hospitals, and 

clinics can facilitate patient-centered communication in cancer care 

by providing patients with navigation programs and other instrumental resources. Busy physicians may 

need social workers, navigators, 

interpretators, or other professionals 

to help patients learn about and gain 

access to needed health services. 

Given the complexity of different 

insurance plans and eligibility 

requirements for government-sponsored health plans, electronic 

resources (such as websites and 

automated telephone systems) that 

provide easy access to integrated 

and comprehensive information 

about these services would greatly 

assist clinicians in helping patients 

to get access to the care they need. 

3.2.2 Improving patient 

knowledge and shared 

understanding 

Contextualized disease-specific 

knowledge and shared understanding are precursors of many of the 

other pathways. Knowledge and 

shared understanding are essential 

ingredients of informed decisions,18 

enhancing patients’ sense of control, facilitating adherence, and 

reducing anxiety. In order to be 

fully knowledgeable, patients and 

family members should have 

lead to shared understanding that 

builds patients’ trust in their clinicians and enhances participation in 

clinical encounters. 

However, clinicians, patients, and 

families see illness through the 

lenses of their particular health 

beliefs. The self-regulation theory 

by Leventhal and Carr24 and the 

explanatory model theory by 

Kleinman25 both suggest that 

patients have illness beliefs and 

models that are in part conditioned 

by their culture and prior experiences and, more currently, the 

Internet. These illness representations are often dynamic and complex, based on “common sense” 

rather than empirical research or 

scientific theory, and sometimes 

reflect a pseudoscientific aura. 

Nonetheless, they create a sense of 

threat and imply certain means for 

reducing that level of threat. 

Leventhal and Carr further suggest 

that patient decisions and actions 

that may seem irrational to clinicians actually may be attempts of 

the patient to reduce the threat of 

illness perceived on the basis of his 

or her own illness representations. 

These observations provide an 

explanation for why patients may 

take medications for hypertension 

only when they feel “tense”26 or 

why patients who believe that surgery spreads cancer27 may choose 

radiation or natural treatments. 

Clinicians also hold some of these 

of these beliefs, patients ma

have a coherent way of artic

them. 

Thus, shared understanding 

depends on making sure rele

information is exchanged, ev

patients’ and clinicians’ illne

resentations, and, when the r

sentations are in conflict, 

reconciling them. The media

effect of shared understandin

the relationship of communi

to outcomes, then, is due to 

edge and shared understandi

simply the exchange and rec

information. 

3.2.3 Enhancing therapeuti

alliances 

A dependable, trusting patie

nician relationship is particu

important for patients with c

because of the threat of the i

and the fear it evokes.29,30 In 

care, the patient and his or h

family typically encounter p

cians, nurses, technicians, an

other health professionals fr

multiple disciplines, includi

radiology, primary care, med

oncology, and surgery. The t

peutic alliance includes the i

lationships among multiple 

professionals, the patient, an

members of the patient’s fam

Indicators of a strong therap

alliance include mutual trust 

well as the patient’s percepti
(E in Figure 3.1) suggests that a 

strong relationship can lead to 

reduced suffering and increased 

healing by decreasing anxiety and 

promoting the patient’s sense of 

feeling known and understood.31,32 

Second, an indirect link suggests 

that communication that establishes and reinforces a strong therapeutic alliance leads to continuity 

of care, patient satisfaction, and 

commitment to treatment plans 

that can reduce rates of morbidity 

and mortality (links B, C, and D). 

Although we will discuss moderators later, two are worth noting here. 

First, social distance is an important 

moderator of the effectiveness of 

the therapeutic alliance. Patients 

appreciate clinicians who can 

understand and have empathy with 

their life circumstances. This fact 

may provide an explanation about 

why some patients are more satisfied in race-concordant relationships.33 Length of relationship is 

also a moderator of the therapeutic 

alliance. Patients tend to choose to 

remain with physicians whom they 

trust and tend to seek a different 

physician when trust is lacking.34 

3.2.4 Enhancing patients’ ability 

to manage emotions 

Patients with cancer and their families often experience a plethora of 

terrifying emotions as they face the 

potential for death and suffering 

ease-specific information and helps 

the patient understand the health 

care system, the patient may experience a greater sense of control, 

hopefulness, and/or peace.36 

Validating patients’ emotional experiences and encouraging them to 

express these emotions have been 

linked to lower levels of anxiety and 

depression.37-40 Communication that 

enhances patients’ self-confidence, 

sense of worth, and hope may confer meaning, motivation, and energy 

needed to pursue work or leisure 

activities and allow them to enjoy 

greater quality of life despite the 

cancer and its treatment. Although 

patients’ emotional distress can 

originate from many nonclinical 

sources (e.g., living alone), poor 

communication with their clinicians 

can compound this distress.41 Thus, 

patient-clinician communication 

can promote emotional well-being 

directly or through enhancing the 

patient’s ability to cope with stress, 

uncertainty, and unexpected setbacks outside of the consultation 

setting. 

3.2.5 Improving family/social 

support and advocacy 

Social support can have a major 

impact on physical health16 and 

quality of life42 and may improve 

survival among patients with cancer.43-47 Social support likely 

improves health outcomes through 

several mechanisms (Figure 3.2).16 

enhancing a sense of co

and providing opportun

process, share, or discu

situations confronting t

family, and friends can 

patient with emotional 

agement, which may re

levels of anxiety and ar

associated neurohumor

Second, family and soc

can provide instrument

encouragement, and ad

gaining access to and e

utilizing health service

cial resources to accom

related goals. Family m

friends can provide dir

they are present with th

or indirect (when they 

ics for the patient to di

into clinical conversati

tate communication be

cians and patients.50,51 

Third, family and socia

networks can enhance 

efforts for achieving se

as getting information 

illness that can be used 

for decision-making, q

smoking, or adhering t

Sometimes families an

provide help actively a

itly, and sometimes the

indirect and tacit and i

by setting implicit norm

behavior. All of these p

may increase self-estee

reduce feelings of depr

the patient. Few studie

46 
ferent settings;42 rather, studies 

have tended to be designed to 

examine individual aspects of 

social support (information52 or 

emotional53,54) or to create global55 

or aggregate scores.56-58 

Patient-clinician communication 

can contribute to improved health 

through the social support pathway 

in several ways. First, patient-clinician communication itself is a 

form of social support that 

decreases social isolation and pro

and support groups. Second, clinicians and patients can discuss ways 

of reinforcing patients’ social environments and the resources available within these networks (e.g., 

transportation, emotional support). 

Third, because cancer survivors 

with close supportive relationships 

often adjust better to the disease, 

clinicians can help direct patients 

to support groups and other 

resources, especially when a 

patient’s networks have failed to 

provide needed support.59 Face-to

these barriers by directing p

to online support groups, wh

have much greater reach and 

produce benefits that are com

ble to those of face-to-face 

groups.60 Lastly, because som

forms of social support may 

“negative” (promoting unhe

behaviors such as smoking o

intentioned nagging that cre

more stress),61 clinicians can 

cuss with patients the nature 

negative support and ways to 

age these problems or can ev

Figure 3.2 Several clinician communication behaviors can enhance social support, which improves health 

outcomes through several mechanisms. 

Clinician Communication Behaviors 

Strengthen 

Clinician-Patient 

Relationship 

Reinforce Existing 

Social Networks 

Direct Patients to 

Formal Support 

Groups 

Attenuate 

“Negative” Social 

Influences 

Social Support 

Reduced 

Psychological 

Arousal 

Instrumental Help 

and Advocacy Enhanced Self-Care 

Improved Survival and Health-Related Quality of Life 
medical decisions 

Patient-clinician communication 

also can improve health to the 

extent that it leads to the best possible medical decision for the 

patient. High-quality decisions are 

characterized by communication 

that achieves the following:62-64 

• Elicits the patient’s needs 

• Presents relevant clinical evidence in a way that the patient 

understands 

• Effectively addresses the emotional aspects of decisionmaking 

• Aligns clinician and patient 

perspectives so that the decision reached is concordant 

with the patient’s values and 

with clinical evidence (link B 

in Figure 3.1) 

High-quality decisions ideally 

improve both survival and multiple 

dimensions of quality of life.65 

The path to high-quality decisions 

is not always straightforward. First, 

decision-making is difficult when a 

patient’s wishes are unclear or 

ambivalent, such as when a patient 

with recurrent cancer wishes to 

decline additional chemotherapy 

that has limited effectiveness but 

does not want to “give up.” Second, 

experts may give conflicting recommendations, forcing patients to 

choose among different sources of 

authority. This situation is fre

mised when a patient’s decision 

preferences are in response to 

“common sense” notions about disease causation24 and not based on 

scientific understanding. Patients 

may choose less effective herbal 

treatments rather than chemotherapy, for example, because they are 

“natural.”66 Fourth, difficulties arise 

when clinicians try to communicate 

risk,67-69 as many patients have difficulty understanding numerical presentations of risks and benefits. A 

lack of understanding may lead 

patients to make choices that are 

unlikely to help them achieve their 

goals. Use of graphical displays 

can augment clinicians’ efforts to 

explain and understand risk; one 

especially helpful graphic is the 

100-person diagram, in which the 

proportion of positive and negative 

results is displayed in the form of 

stick figures of different colors or 

faces with happy or sad expressions. These tools improve patient 

understanding and their ability to 

use data to guide their choices.70-73 

Measurable indicators of better 

medical decisions include the following: 

• Consensus on treatment 

• Clinician and patient/family 

satisfaction with their respective involvement in the decision-making process 

• Concordance of the decision 

with the patient’s values 

means and capabil

Patient-centered comm

can produce a decision 

these criteria, but the u

come of the decision w

erated by a number of 

including unanticipated 

developments, such as 

ances; availability of tr

the patient’s home tow

coverage; and member

patient’s social network

or may not approve of 

treatment. Little is und

about the role of regret 

taking in decision-mak

are likely to influence c

3.2.7 Enhancing patie

empowerment and age

Patient-clinician comm

also can improve healt

empowering patients to 

capable agents in mana

health. Agency is a psy

construct that describe

to work within one’s e

to do things on one’s o

Agency incorporates m

self-efficacy, empower

enablement (Table 3.3) 

precondition for behav

adherence to long-term 

treatments, and self-ca

sense of control that pa

cancer feel has been lin

tional well-being and c

ing survivorship.74,75 In 

diseases, such as diabe

48 
or other life circumstances that 

limit their ability to self-manage. 

In such cases, social support interventions beyond those offered by 

the patient-clinician relationship 

may be necessary to develop or 

restore more effective coping and 

problem-solving strategies. 

O’Hair et al. describe a three-stage 

process through which communication can enhance patients’ sense 

of agency.77 At the first stage, 

patients are confronted with uncertainty as they try to find their paths 

through unfamiliar and often terrifying circumstances. By managing 

uncertainty, the problems acquire a 

structure; they appear manageable 

rather than chaotic and random. 

The second stage involves empowerment, which requires advocacy 

on the part of others (clinicians, 

family members, support groups, 

etc.), as well as patients finding 

and having a voice in the clinical 

environment, whether that involves 

seeking information, participating 

Table 3.3 Agency 

assertion of one’s perspective in 

both clinical and nonclinical settings.83 Patients and families who 

are enabled have the ability to 

solve problems and cope with 

health-related complications and to 

seek and interpret health-related 

information. They also have the 

ability and volition to follow 

through with appropriate treatment 

recommendations. 

Clinicians can help patients acquire 

agency through many of the components of patient-centered communication, including the following: 

• Supporting patient autonomy84,85 

• Building partnerships83 

• Managing uncertainty86 

• Facilitating information
 

exchange 


• Providing access to educational 

and problem-solving resources 

• Assisting with effective navigation of the health care system 

Agency Ability to work within one’s environment 

to do things on one’s own behalf 

Motivation Willingness to work toward a goal 

Self-efficacy Belief that one can accomplish a 

particular goal 

Empowerment Permission and encouragement to 

accomplish a personal goal 

Enablement Possessing the skills, tools, and abilities 

to accomplish a goal 

ability to solve problems.60,87 

3.3 Moderating Factors Aff

Communication Processes a

Relationship of Communica

Process to Outcomes 

Our model (Figure 3.1) high

the main effects of commun

on proximal, intermediate, a

tal health outcomes, as well 

pathways through which com

cation achieves these outcom

However, we recognize that 

experiences of patients and t

families over the course of t

cancer care continuum are b

dynamic and complex. Henc

number of variables may mo

relationships between comm

tion and various outcomes. 

A moderator is a qualitative 

quantitative variable that aff

the direction or strength of t

relationship between an inde

ent variable and a dependen

able.88 Moderators themselv

or may not have independen

effects on the dependent var

A variable is considered to b

moderator when its interacti

with a main independent var

can predict the outcome vari

For example, if a patient wh

considerable trust in his or h

nician was not as anxious as 

trusting patient when the cli

expressed reassurance about 

favorable prognosis, then th
mediate outcome. 

We have noted that the research on 

communication and outcomes in 

cancer settings is limited, and even 

fewer studies have been conducted 

on moderators of these relationships. Moreover, much of the 

research has been superficial at 

best, focusing most often on individual differences among clinicians and patients rather than on 

theoretical reasons explaining why 

these individual differences have a 

moderating effect. As a case in 

point, suppose an investigation 

found that the relationship between 

a clinician’s advice and the 

patient’s subsequent commitment 

to chemotherapy was moderated 

by whether the clinician and 

patient were of the same race. 

Although racial concordance moderated the effect of communication 

on adherence in this study, it is not 

clear why. The patient may have 

perceived a clinician of the same 

race to be more trustworthy or 

empathic and/or similar with 

regard to language use; each of 

these factors could account for the 

moderating influence of racial concordance. Importantly, one could 

easily identify other variables that 

may render racial concordance 

insignificant,89 such as the duration 

of the patient-clinician relationship, similarity in age or religion, 

or clinician skill at finding common ground with the patient. 

munication and outcomes in the 

noncancer setting, and the findings 

have indicated that female clinicians and their female patients talk 

about psychosocial topics more 

often than male clinicians and their 

male patients.90,91 One might infer 

from this finding that patient-clinician communication about emotional well-being and social 

functioning may lead to better outcomes for women than for men, but 

other moderators may be equally or 

more influential, such as the stage 

of the cancer, the type of cancer, the 

patient’s age, the patient’s social 

support, the degree of patient-clinician familiarity, the type of clinician 

(nurse, oncologist, family physician), the clinician’s age, and/or the 

patient’s personality. 

An important challenge for 

researchers is to uncover the cognitive, emotional, and behavioral 

processes accounting for the 

effects of variables moderating the 

relationship between communication and outcomes, as well as to 

identify the reasons some moderators are more important than others 

in certain contexts. Demographic 

information is easy to acquire, and 

its moderating influences are easy 

to analyze. In the absence of other 

measures, however, researchers 

often resort to speculation to 

explain the influence of demographic moderators. To make significant progress in understanding 

ate the relationship bet

communication and ou

Within the context of o

moderators operate at m

els, influencing the lin

communication and its 

antecedents, as well as 

ships between commun

proximal, intermediate

(health) outcomes. Alth

comprehensive review 

moderators of patient-c

communication in canc

beyond the scope of th

(see Appendices A thro

more detailed reviews)

an overview of some o

ables, particularly thos

see as particularly imp

need of further study. 

We place moderators a

dimensions (Figure 3.3

dimension related to th

which the factor is intr

extrinsic to clinicians, 

their relationship, and 

related to the degree to 

factor is mutable. Intri

tors (Table 3.4) are cha

of individuals and rela

that either directly or i

into affective and cogn

processes (Table 3.4). 

erators include the pati

tional state, health liter

perceived threat of illn

edge about the illness, 

vation, and self-efficac

corresponding clinicia

50 
Stable 

*Intrinsic to clinicians, patients, and other relationships 

Extrinsic moderators include 

disease factors (e.g., type of cancer, prognosis, and stage of disease), the family and social 

environment, cultural values and 

beliefs, the health care system, and 

economic factors. The stable-mutable dimension reflects the degree 

to which the moderator is susceptible to change. Understanding 

which factors are changeable and 

which are not is crucial in cancer 

care because interventions can be 

targeted to modifiable factors to 

increase the likelihood that communication will accomplish 

desired outcomes. Factors that are 

more stable (i.e., less modifiable) 

impose constraints or opportunities 

that must be taken into account. 

For example, health literacy (discussed later) is apt to be an important moderator of the relationship 

between patient involvement in 

decision-making and adherence to 

treatment. Patients who have a better understanding of the disease, 

their options for treatment, and the 

risks and benefits of different treatments will probably participate 

more effectively in the decisionmaking process. Because health 

Race 

Gender 

Education 

Primary Language 

Family Structure 

Income 

Cultural Values 

Type of Cancer 

Regulatory Factors 

Family Functioning 

Social Support Network 

Access to Care 

Media Coverage 

Stage of Cancer 

Illness Representations 

Social Distance 

Self-Awareness 

Clinician Attitudes 

Emotional Disorder 

Perceived Risk 

Extrinsic 

Muta

literacy is to some degree m

clinicians providing patient 

tion interventions prior to de

making92 can optimize the pa

capacity to participate effect

This enhanced participation 

lead to a greater likelihood o

pleting treatment and thus, l

survival. 

The importance of identifyin

mutable moderators of comm

tion-outcome relationships p

to the shortcomings of focus

solely on demographic facto

moderators. Demographic va

are, for the most part, stable. 
– Traits: personality, tolerance of uncertainty, 

risk aversion, attachment style 

– Primary language, English fluency 

– Education, health literacy, communication 

skills training 

– Cognitive deficits, ability to understand 

– Communication style 

• Linguistic and paralinguistic style (e.g., 

directness, passivity, eye contact) 

• Adaptability of communication style to 

different situations 

– Attitudes: general health beliefs, patientcentered orientation 

– Self-awareness 

• Ability to self-monitor 

• Ability to repair miscommunication 

• Predominantly states 

– Knowledge about the illness and treatment 

– Attitudes: stereotyping, expectations, 

health beliefs, perceived threat of illness 

– Well-being 

– Emotional states: anxiety, emotional distress 

– Motivation, self-efficacy 

Relationship factors: Patients, multiple 

clinicians, and family members 

• Mutual influence and accommodation 

• Family structure and functioning 

– Type of cancer 

– Stage of disease 

– Comorbid conditions 

– Overall health status 

• Social factors 

– Social support 

– Prejudice and bias based on race, 

social class, or other factors 

• Cultural factors 

– Cultural beliefs, values, and expec

– Adaptation and assimilation 

• Communication media 

– Use of electronic communication 

– Access to and use of the Internet 

– Media coverage of health topics 

• Health care delivery factors 

– Environment (noise, privacy) 

– Organization (scheduling, etc.) 

– Access to multidisciplinary teams, 

navigation programs, and clinical 

protocols 

• Societal factors 

– Access to care, transportation, ins

– Legal andregulatory factors (infor

consent, disclosure of private info

assisted suicide) 

– Eligibility for specific health servic

(palliative care) 

the reasons they are moderators are 

often due to potentially mutable 

factors. Consider, for example, the 

common research finding that older 

patients prefer to be less involved 

in decision-making than younger 

patients.93-97 It is unclear whether 

the relationship between age and 

preferences for involvement is due 

to expectations based on previous 

experience (a modifiable factor), 

traditional beliefs about control in 

the patient-clinician relationship (a 

potentially modifiable factor), or 

cognitive impairment (a stable factor). It would be important to discover the reason for an older 

patient’s preferences in order to 

determine whether the 

should take control of d

making (if the preferen

firmly held) or offer th

educational interventio

addition to providing in

about treatment option

imized the patient’s inv

and encouraged the pat

52 
cian makes the final decision.98 

3.3.1 Intrinsic moderators of 

patient-clinician communication 

and outcomes 

It is beyond the scope of this chapter to provide a comprehensive 

review of potential moderators of 

the effect of communication on 

outcomes. However, we discuss 

here four intrinsic moderators that 

are particularly important in cancer 

care and that are, to varying degrees, 

modifiable: health literacy, social 

distance, clinician attitudes toward 

different patients, and patient preferences for clinician and patient 

roles in cancer care. We emphasize 

that these moderators serve as examples from a longer list of modifiers 

and that these moderators overlap 

considerably in certain contexts. 

Health literacy 

Health literacy refers to a person’s 

capacity to obtain, process, and 

communicate information about 

health.99 Health literacy is an important moderator of relationships 

between communication and outcomes because it affects patients’ 

ability to understand clinical and 

health-related information.100 Low 

health literacy also may restrict a 

patient’s ability to be an active participant in medical consultations 

because of limited familiarity with 

health-related terms83,92,100 and the 

embarrassment of limited under

agency, may be less effective for 

patients with low literacy. 

The communication challenges facing people with limited health literacy may account for some of the 

disparities related to race,102 access 

to care,103 and poorer health outcomes among individuals with 

chronic disease, such as diabetes.104­

106 Moreover, low literacy is associated with lower rates of cancer 

screening and utilization of health 

care services.107,108 Interestingly, 

Lindau and colleagues109 found that 

patient adherence to attending a 

follow-up visit for abnormal findings on Pap smears was not related 

to objective assessments of health 

literacy but was related to physicians’ perceptions of low health literacy. These findings suggest that 

communication-related factors (e.g, 

patient participation, clinician attitudes toward patients) may play an 

important role in how literacy and 

related perceptions interact in consultations. Health care facilities can 

help address barriers related to low 

literacy by providing patients with 

educational resources specifically 

developed for low-literacy populations. Health literacy may relate not 

only to low educational level but 

also to culturally reinforced health 

beliefs. Thus, in addition to including easy-to-understand language, 

educational interventions also should 

be culturally appropriate.110,111 

Although we consider health liter

body.”) and mistrust of the h

care system (e.g.,“The medic

industry is withholding canc

cures for profit.”).27 

Social distance 

Although social distance has 

conceptualized in a number o

ferent ways, for our purposes 

to the number and importanc

dissimilarities between clinic

and patients. Social distance 

a perception or be based on o

indicators, and the two may o

not correlate. For example, a 

cian and patient from differe

tural backgrounds may have 

real differences in their respe

illness representations, prima

guage, beliefs about personal 

trol over disease, and treatme

goals.112 These differences ca

ate communication problems 

may account for situations in 

clinicians have difficulty und

standing the life circumstanc

patients who have cultural an

cational differences. On the o

hand, differences in race, gen

and cultural background may 

translate automatically into pe

social distance. A black fema

patient with children may fin

she has much more in comm

with a white female clinician 

same age who also has child

than with a much younger, s

black male clinician. 

Social distance is an importa

moderator of the relationshi
standing or bias (discussed later) 

that could lead to situations in 

which patients’ needs are not 

understood and for false assumptions about their values, needs, and 

capabilities.113,114 In these situations, 

communication related to information exchange and decision-making 

may not involve the patient understanding and shared knowledge 

pathway to immediate outcomes 

(knowledge, satisfaction with care) 

or intermediate outcomes (adherence, high-quality decisions). 

Second, social distance can make it 

difficult to establish effective 

patient-clinician relationships. 

Patients appreciate clinicians who 

can understand and have empathy 

with their life circumstance115 and 

provide them with a sense of being 

known.32 Clinician communication 

intended to enhance the relationship, such as expressions of empathy and shared understanding, may 

not be as effective in building the 

therapeutic alliance if the patient 

does not perceive the communication as sincere or believes the clinician is not capable of empathic 

understanding. In these situations, 

the clinician may be less able to 

comfort the patient and ease his or 

her distress. 

Third, although objective markers 

of social distance may be difficult 

to change, perceived social distance is mutable, especially with 

the effective and sincere use of 

cians communicate concern and an 

interest in the patient as a person. 

In turn, when patients share their 

beliefs, values, and preferences, 

they are sharing information that 

provides opportunities for the clinician to understand the patient 

better and for both parties to discover common ground. The power 

of effective communication in 

decreasing perceived social distance is suggested in studies that 

have shown that patient trust 

increases during the consultation 

when clinicians are perceived as 

more informative, caring, and 

interested in the patient’s views.15 

An increase in trust, in turn, leads 

to more continuity in the patientclinician relationship in that 

patients choose to remain with 

physicians whom they trust.34 

Clinicians’ attitudes toward 

patients 

Although most clinicians are not 

deliberately biased in their views 

about different kinds of patients 

(according to race, sex, or age), 

they may have subconscious attitudes that influence how they perceive and communicate with 

patients.116 Multiple factors, including power and social roles, lead to 

unconscious stereotypes and biases 

that affect clinicians’ interpretations of patients’ capabilities, character, and symptoms.114,117 These 

interpretations, in turn, influence 

clinician communication, such as 

following up on the concerns of 

these attitudes may rel

distance, other factors, 

sonality, likeability, an

tional style clearly hav

Clinicians’ attitudes to

patients may affect the 

which communication 

plishes desired outcom

ways. First, stereotypic 

toward patients are ove

tic. For example, a clin

assumes a patient is no

understanding complex 

tion (an assumption th

based on the demograp

teristics of the patient) 

matically conduct the c

in a more controlling m

especially if pressed fo

little of the communica

be patient-centered, thu

the potential of activat

pathways toward bette

In addition, many bias

ciated with negative pe

patients, and thus less 

The degree to which cl

their patients has been 

with greater patient an

satisfaction with their e

Negative attitudes abou

may be revealed subtly 

bal behavior, such as v

and body orientation.11

verbal behavior dimini

value and sincerity of v

behaviors that otherwi

considered patient-cen

as building partnership

ing information. 

54 
ical patients,9 researchers found 

that physicians recommended more 

intensive cancer diagnostic procedures for a white woman regardless 

of her communication behavior but 

recommended the same procedures 

for a black woman only when she 

was assertive in asking about the 

tests in the scenario. Clinicians’ 

negative attitude toward certain 

types of patients may be the reason 

for the higher number of black 

patients and poor patients who 

report that a positive self-presentation is important in getting good 

medical care compared with white 

patients and patients of higher 

socioeconomic status.120 As a consequence, patients who are socially 

disadvantaged and are less inclined 

to assert themselves in clinical situations bear a greater burden for 

achieving effective communication 

than do their more socially privileged counterparts.74,121 

Studies using vignettes often 

demonstrate evidence of clinician 

bias. However, several studies of 

actual consultations have shown 

that clinicians’ communication 

with and perceptions of patients 

are more a function of patient participation than demographic attributes, although the latter may have 

some effect.122,123 This finding suggests the need for health care facilities to develop educational 

resources that facilitate active 

patient participation. Also, inter

Patients preferences for clinician 

and patient roles 

Patients have expectations for their 

own role and the clinician’s role in 

cancer care, especially with regard 

to what issues are discussed and 

who has control over decisionmaking. Patient preferences may 

be an important moderator of communication-outcome relationships 

in several respects. First, a substantial number of patients with cancer 

do not achieve their desired level 

of participation in the decisionmaking process,95,124 which, in turn, 

can lower satisfaction with care 

and increase decisional regret and 

anxiety.125,126 Thus, a clinician’s 

well-intentioned but mismatched 

communication behavior, such as 

partnership building with a patient 

who prefers clinician control of 

decisions or assuming decisional 

control for a patient who wants to 

be involved in decision-making, 

may interfere with pathways to 

better outcomes, such as highquality decisions, the patient’s 

ability to manage emotions, and a 

strong therapeutic alliance. 

Patients vary with regard to their 

expectations for clinician and 

patient roles, a finding often associated with demographic variables. 

For example, older and less educated patients are more likely to 

prefer paternalistic decision-making models, whereas younger and 

more educated patients desire 

active and collaborative roles.93-97 

cussing their feelings directl

Patients’ preferences are som

mutable, as they may chang

depending on the nature of t

ness, the relationship with th

nician, and psychological di

preferences also may change 

the course of consultations. 

example, when a patient is s

or more distressed, he or she 

prefer to relinquish decision

trol to the clinician.95,129 Also

patient preferences may cha

during a single consultation

study, patients’ perceived ro

the consultation—not their p

ferred role, was the stronger 

dictor of evaluations of care

Patients who reported a shar

with their physicians were m

satisfied and evaluated their 

cians’ communication more 

ably than did patients who 

perceived that their actual ro

matched their previously sta

role preference. However, pr

ferred-perceived role match 

associated with less anxiety 

lowing the consultation.130 

In summary, patient preferen

for their own communicatio

well as that of their clinician 

and can moderate the effecti

of different patterns of comm

cation for achieving pathway

toward better outcomes. Bec

clinicians are not particularl

judges of patient preference

and because patients and cli
assessment will help the clinician 

to determine how to manage communication over time, to either 

accommodate the patient’s preferences or to discuss these expectations explicitly in order to align 

clinician and patient perspectives. 

3.3.2 Context as an important 

source of extrinsic moderators 

An ecological model of communication suggests that all communication, including the patient-clinician 

interaction, is situated; i.e., it 

occurs within multiple layers of 

context. By context, we are referring to aspects of the disease and 

the environment that can shape 

patient-clinician communication 

but that are external to the patientclinician relationship (Table 3.4).133 

The same communication tasks, 

behaviors, and principles may be 

associated with different outcomes 

depending on the context in which 

they occur. Unfortunately, the role 

of context in clinical encounters 

has not been addressed in most 

research on patient-clinician communication. Context is an important component of our model of 

patient-centered communication in 

cancer care because it is a source of 

numerous extrinsic moderators that 

will influence communication 

processes and outcomes. 

Several contextual elements have 

the potential to influence health 

• Cultural context 

• Media environment 

• Health care system 

• Societal factors 

Disease-related factors 

The type of cancer, stage of disease and phase along the cancer 

care continuum all influence the 

types of relevant communication 

processes and outcomes. Some 

types of cancer, such as basal cell 

skin cancers, are little more than a 

nuisance, whereas others are 

nearly always fatal. Some cancers 

involve multiple treatment options, 

which depend on a complex interplay of disease stage, patient characteristics, and patient preferences. 

Fewer treatment options are available for other cancers. 

Long-term prognosis and uncertainty also differ among cancers. 

For some cancers, a lack of evidence of recurrence after two years 

nearly guarantees a cure; other cancers may appear to be eradicated 

but recur many years later. Still 

other cancers have strong genetic 

components, and family members 

are likely to be affected even if cure 

is achieved in the index patient. 

Thus, we cannot assume that the 

findings of studies of women with 

breast cancer can be applied to 

women with lung cancer or 

leukemia. Chapter 4 includes a 

detailed discussion of how the 

goals of communication, the rele

The patients social env

consisting of extended 

friends, and coworkers

mediate and moderate 

ship between patient-cl

munication and outcom

who have social netwo

vide disease-related inf

emotional support, and

household tasks and tra

to medical appointmen

report better mental he

optimism than do patie

such social support.134,1

works also can either r

undermine the decision

a clinician and patient 

affect adherence and he

comes. Lack of social s

the form of family criti

ciated with a higher fre

visits in primary care s

and the same may hold 

patients with cancer. W

members are present in 

encounters, family-rela

can also moderate the r

between communicatio

comes.15,51 Family mem

facilitate the interaction 

patients acquire and un

clinical information) or 

interaction (e.g., interru

patient to interject their 

agenda); in addition, an 

number of participants 

cate the interaction. 

Clinicians must concep

cer care as a family iss

56 
are the primary caregivers for 

patients with cancer, offering both 

instrumental help and emotional 

support. In addition, family members themselves can be profoundly 

affected by the patient’s cancer; 

they frequently experience closeness and/or burnout from caregiving.137,138 Two levels of family input 

must be considered in improving 

clinical communication: how to 

manage office visits or hospital 

stays when the patient is accompanied by family and how to seek and 

incorporate family members’ perspectives when they are not present. A body of literature addresses 

the impact of cancer on family 

members, but very little of it 

directly pertains to the quality and 

style of communication. 

Cultural context 

The cultural context of cancer care 

is important because of the various 

ways it can affect patient and clinician communication styles, the 

interpretation of messages, and 

subsequent outcomes. Although we 

have discussed some of these 

issues as they relate to intrinsic 

moderators, we consider cultural 

context to be a source of extrinsic 

moderators because cultural 

beliefs, values, and practices 

extend beyond individuals and 

characterize larger segments of the 

population. Perhaps most obvious 

is that clinicians and patients from 

different ethnic backgrounds often 

preferred styles of communicating 

may vary across different cultural 

groups, particularly with respect to 

assertiveness and expressiveness. 

People from collectivist cultures 

(e.g., Asians) often have communicative styles characterized by 

indirectness, respect for authority, 

and accommodation to others;141 as 

a result, they may have more difficulty than patients from Western 

cultures in being assertive and 

expressive when communicating 

with clinicians.141,142 Western clinicians may interpret this as passivity or agreement. 

How messages are interpreted is 

shaped by culture. “Hearing 

voices” might be considered to be 

a sign of insanity by Anglos but 

interpreted as a religious experience by Mexican Americans.143 In 

brief, culture is a complex feature 

of context. Cultural beliefs about 

the cause of an illness, personal 

control over health, and the best 

way to manage health problems 

mediate what clinicians and patient 

talk about, how they talk about 

these topics, how they interpret one 

another’s communication, and the 

outcomes resulting from these 

encounters.25,142,144 

Media environment 

The media environment affects 

patient-clinician communication 

processes and outcomes in several 

respects. Media coverage of a 

health issue can influence 

media campaign promoting 

Bella therapy, an unproved 

treatment, which substantia

increased expectations and 

among patients with cancer

hopes were shattered once t

treatment was publicly show

be ineffective. 

Pharmaceutical companies u

mass media for direct-to-con

advertising to prompt patient

ask physicians, physician ass

and nurse practitioners for th

products—a strategy that app

be successful.146 Also, the me

environment, and the Interne

particular, offer extensive inf

tion resources for patients wi

cer and their families. On the 

hand, patients may benefit fr

information by better unders

their conditions and treatmen

expectations and participatin

effectively in medical interac

tions.60,87 On the other hand, m

of this information may be sc

cally suspect and patients oft

be overwhelmed with the she

amount of information availa

Changes in ways of accessin

mation have had a major infl

on the dynamics of patient-cl

interactions. No longer are p

only providing information a

their symptoms and illness ex

ences, they are also engaging 

bidirectional exchange of dis

related information, often co

ing the Internet prior to the in

meeting with an oncologist.87 
lenge of navigating a complex 

health care system. Facilities offering an effective “team” approach 

may provide care that is coordinated and features good communication among multidisciplinary 

team members. Such facilities also 

may offer informational and social 

support resources to clinicians and 

patients in person, through shared 

electronic patient records as well as 

the Internet. In contrast, loosely 

integrated care may require that 

patients use medical services at 

multiple facilities. Even simple 

changes in organizational procedures, such as longer scheduled 

visits, can have a significant effect 

on patient-clinician communication 

to the extent they constrain or facilitate patient involvement in the 

decision-making process. Longer 

visits are characterized by greater 

patient participation, and patients 

control proportionally more of the 

conversational floor.147,148 In short, 

health care systems should take 

into account the degree to which 

their organizational procedures 

affect the quality of patient-clinician communication, especially 

since problematic patient-clinician 

communication may lead to poorer 

outcomes, unnecessary tests, more 

readmissions, and higher costs.7 

Societal factors 

Although the subject of little 

research, societal factors, including 

the regulatory and legal environ

medications. Requirements for the 

informed consent process and disclosure of information provide legal 

safeguards that are intended to protect patients from abusive or negligent medical care. The requirements 

help ensure that clinicians are providing legally appropriate care and 

alert patients to their eligibility for 

services, such as hospice care. 

However, the volume of paperwork 

that must be reviewed and signed 

often imposes inconveniences that 

take up valuable time and could 

detract from clinician and patient 

goals for the encounter. In addition, 

a clinician’s direct or indirect experience with malpractice claims 

could influence his or her conduct 

in the consultation and attitudes 

toward patients. Many physicians 

worry about lawsuits, which, in 

turn, may contribute to a general 

distrust of patients.149 Some clinicians may adopt a more cautious 

and guarded style of communicating with patients because of fear of 

litigation, whereas others will use 

more patient-centered communication because these behaviors may 

lower the risk for malpractice.150 

3.4 Multilevel Modeling 

Given the complexities of factors 

affecting patient-clinician communication processes, the pathways 

though which communication 

achieves desired outcomes, and the 

moderators of these relationships, 

factors on the relationsh

communication and hea

These factors will be di

detail in Chapter 5, but 

five studies here. In two 

Street122,123 examined the 

which physician and pa

munication behaviors w

uniquely to their own p

acteristics, the other’s p

characteristics, and the 

munication behaviors. B

nested multilevel mode

able to discern that the 

individual style of com

(a predisposing influen

patient’s communicatio

(asking questions, expr

cerns) were stronger pr

the degree to which phy

information, issued dire

engaged in partnership 

and provided positive s

tional responses than w

characteristics per se (e

anxiety, and relational h

the physician). Of the p

acteristic variables, onl

education uniquely exp

tion in the physician’s c

tion; physicians engage

partnership building wi

educated patients. Stree

that patients did not talk 

to individual physician

patients did ask more q

offer more opinions wh

cians used partnership-

behaviors more frequen

tion, patients’ commun

58 
A more recent study from Street 

and colleagues similarly involved 

the use of multilevel analyses to 

examine variations in patientphysician communication and 

physicians’ judgments of the 

patients as communicators.151 The 

strongest predictors of the physicians’ use of patient-centered communication was the physician’s 

individual style, the degree to 

which the physician had a “sharing” (as opposed to physician-centered) orientation to the 

physician-patient relationship,152,153 

and the degree to which patients 

were actively involved and 

expressed positive affect. Patientcentered communication was not 

related to patient demographic 

characteristics. However, physicians’ judgments of patients as 

communicators were more positive 

for white patients than for black 

patients and for patients who 

expressed more positive affect. 

In a related study,154 physicians 

appeared to give more information 

to white patients than to black 

patients. However, when communication variables were entered into 

the equation, physician information-giving was no longer related to 

race per se but rather to the degree 

to which patients were active participants; i.e., black patients received 

less information because they were 

less actively involved in eliciting 

information from physicians. 

degree of the physician’s patientcenteredness, and the level of the 

physician’s supportiveness for the 

patient’s autonomy.155 The authors 

used surveys completed by 4,700 

patients of 96 physicians to examine the adjusted relationship 

between patients’ perceptions of 

their physicians and reported 

changes in health status. Although 

there were significant adjusted 

relationships, patients who saw 

their physicians more favorably in 

terms of communication and trust 

had a smaller risk of decline in 

health status. Multilevel analysis 

showed significant differences in 

patients’ perceptions of their physicians. These differences were unrelated to reported changes in health 

status, however, suggesting that 

unmeasured communication and 

relationship factors—not physicians’ overall communication 

style—affected health status. 

3.5 Conclusion 

Models of communication should 

be simple enough to be understandable and guide empirical research, 

yet complex enough to approximate clinical reality. We have proposed a model of mediation of 

communication in which the six 

communication functions described 

in Chapter 2 lead to proximal communication outcomes, which themselves act as mediators between 

communication and intermediate 

• Patient knowledge and s

understanding 

• Access to care 

• Therapeutic alliances 

• Emotional self-managem

• Family/social support an

advocacy 

• Quality of medical deci

• Patient agency (self-effic

empowerment, and enab

ment) 

In turn, these pathways lead 

ter adherence, health habits, 

self-care. Studies of modera

the relationship between com

cation and proximal, interm

and distal (health and societ

comes suggest that relations

factors need to be studied in 

greater depth, including issu

such as gender concordance

shared understanding, mutua

knowledge, and involvemen

family members in care. Fur

more, there may be underlyi

modifiable communication f

that account for some of the 

observed demographic diffe

in outcomes. Little is known 

moderating effect of differen

munication media (in person

phone, electronic, asynchron

etc.) on the process or outco

communication. Changes in 

health care system are under

improve patient safety, quali

care, and communication am
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66
 
T

he cancer care continuum 

demarcates a patient’s cancer 

experience into six phases. 

The first two phases, prevention 

and screening, involve the entire 

population. The diagnosis, treatment, and survivorship phases 

eventually will involve all patients 

with a diagnosis of cancer. The 

end-of-life phase is relevant for 

patients who have cancers that 

cannot be cured but clearly is also 

relevant to individuals who die of 

other causes. 

The patient’s position along the 

cancer care continuum is one of 

the most important contextual elements that determine the nature of 

the concerns raised during clinical 

encounters, the most relevant 

health outcomes, and the specific 

pathways by which communication 

affects those outcomes. In Chapter 

2, we described six functions of 

communication (Table 4.1) and, in 

general, the proximal outcomes 

associated with each function. For 

example, information exchange 

would be expected to lead to 

improved knowledge and shared 

understanding. In Chapter 3, we 

described pathways between communication and intermediate outcomes such as self-efficacy and 

adherence, and distal outcomes 

such as quality of life and survival. 

In this chapter, we consider in 

greater detail how each of the six 

communication functions affects 

specific outcomes at each of the 

Table 4.1 Six Functions of 

Patient/Family-Clinician 

Communication in Cancer 

Settings 

• Fostering healing
 

relationships 


• Exchanging information 

• Responding to emotions 

• Managing uncertainty 

• Making decisions 

• Enabling patient self-


management
 

six phases of the cancer care continuum. 

At all phases, clinicians may have 

to assess symptoms, foster change 

in health behaviors, deal with 

uncertainty, and/or discuss plans 

for the future. Nonetheless, the relative balance and importance of 

each communication task changes 

as each patient moves through the 

illness trajectory. Early in the continuum, there may be greater need 

to share information, but later there 

may be more of a need to deal with 

uncertainty; e.g., whether the treatment was effective. Similarly, at 

each phase, different outcomes 

also assume varying degrees of 

importance. For example, emotional well-being may be paramount at the time of diagnosis or 

recurrence, whereas physical functioning may be a more central 

issue during and after treatment. 

Although intermediate outcomes, 
Communication 

Functions 

Fostering Healing 

Relationships 

Exchanging 

Information 

Responding to 

Emotions 

Managing 

Uncertainty 

Making 

Decisions 

Enabling Patient 

Self-management 

Prevention 

Phases of the Cancer Continuum 

Screening Diagnosis Treatment Survivorship End of Li

such as adherence to treatment, 

often are necessary steps to 

achieve desired health outcomes at 

some phases, communication itself 

may have a more direct effect on 

well-being at other phases. 

At each phase, patients normally 

encounter a new set of clinicians. 

During the prevention and screening phases, cancer-related communication usually takes place in 

primary care settings. At later 

phases, surgeons and radiologists 

are involved in the diagnosis of 

cancer, and during the treatment 

phase, oncologists, radiation 

oncologists, surgeons, specialized 

nurses, and technicians are 

involved. Still later, patients often 

return to primary care settings after 

active treatment and often 

encounter specialists in rehabilitation and palliative care. Thus, communication research should take 

into account not only what is communicated but also with whom. 

We suggest a taxonomy of research 

agendas based on the phases along 

the cancer care continuum, relevant 

health outcomes, and the six communication functions (Figure 4.1). 

This perspective is intended to 

guide research that progresses from 

generalities about what improves 

communication to specifics on 

what will improve outcomes for a 

particular patient at a given point 

on the continuum. The taxonomy 

indicates, for example, 

be possible to look at u

ways and outcomes of 

exchange during the tr

phase. It also can help 

in the literature and pro

framework for design o

tions to improve comm

The proximal, interme

distal outcomes of com

were summarized in Ta

(Chapter 3). The discu

follows here (and Tabl

vides a framework for 

particularly important 

each phase of the canc

tinuum. Only some of 

comes have been discu

cancer communication 

68 
Prevention Providing individualized, Patient understanding Health behavior change Cancer preventio

linguistically accessible 

information about 

cancer risks 

and motivation to adopt 

healthy behaviors 

(smoking cessation, 

improved diet, exercise, 

etc.) 

Improvement in l

term quality of lif

Promoting behavior 

change and appropriate 

preventive interventions 

to reduce cancer risks 

Screening Providing individualized, 

linguistically accessible 

Patient understanding of 

risks and benefits of 

Completion of screening 

according to 

Early detection of 

(at a curable phas

information about the 

screening test 

screening 

Decision concordant 

recommended 

guidelines Improved health-

quality of life, bo

Decision-making about with the patient’s wishes immediate (e.g., l

screening when and values anxiety) and long

risks/benefits are unclear (e.g., fewer cance

or when multiple related symptoms 

options exist because of early 

Helping the patient to 

detection) 

navigate the health care 

system to follow-up on 

abnormal test results 

Addressing the patient’s 

worries and concerns 

Diagnosis	 Addressing the patient’s 

anxiety, fear, terror 

Communicating bad 

news 

Promoting recall and 

understanding of 

diagnostic information 

Helping the patient gain 

access to other 

diagnostic facilities 

Discussing probabilistic 

data 

Eliciting preferences for 

role in decision-making 

Communicating 

prognosis while 

maintaining hope 

Making decisions about 

anticancer treatments 

and advance directives 

Providing support to the 

patient, family, 

caregivers, and friends 

Patient understanding 

of the disease, 

prognosis, and 

treatment options 

Patient recall 

Achievement of 

preferred level of 

involvement in decisionmaking 

Satisfaction with choice 

of treatment 

Improved social support 

Self-efficacy 

Perceptions of control 

Timely and accura

diagnosis 

Improved health-

quality of life (esp

emotional well-be

cont’d on 
Treatment Eliciting the patient

s 

experience of 

treatment, symptoms, 

and side effects 

Presenting information 

about the effectiveness 

of treatment 

Deciding on future or 

ongoing curative and 

palliative treatments 

Eliciting and responding 

to emotions of the 

patient, family, and 

caregivers 

Survivorship 

(with or without 

known disease) 

Dealing with uncertainty 

about recurrence 

Eliciting discussion of 

the patient’s concerns 

and symptoms 

Eliciting and responding 

to the patient’s 

emotions 

Presenting bad news 

and making treatment 

decisions if recurrence 

or progression occurs 

Communicating 

prognosis while 

maintaining hope 

Strong patient/family

health care team 

relationship 

Patient understanding 

of treatment and side 

effects 

Patient understanding 

of and comfort with 

uncertainty 

Patient trust in 

clinicians 

Patient understanding 

of prognosis 

Completion of 

treatment at full 

recommended doses 

Self-efficacy 

Motivation 

Adherence to long-term 

treatments 

Timely detection of 

treatable recurrence 

Proactive health 

management 

Improved social support 

Remission 

Improved 

quality of 

minimal si

optimal p

emotiona

minimized 

isolation) 

Maintenan

remission 

Prevention 

or late eff

treatment 

Improved 

quality of 

optimal ph

emotional

functionin

End of life Eliciting the patient’s Decisions and Appropriate use of Improved 

report of symptoms substituted judgments palliative treatments quality of 

Communicating 

prognosis while 

maintaining hope 

concordant with the 

patient’s values and 

wishes 

Improved access to 

palliative care and 

hospice services 

symptoms

functionin

and spiritu

being) 

Making decisions about Improved social support 

anticancer treatments, 

life support, substituted 

judgment, and hospice 

care 

Responding to 

emotions of the 

patient, family, and 

caregivers 

Helping the patient 

navigate the transition 

to hospice care 

*These examples are designed to be illustrative and do not represent a comprehensive list of tasks or outcomes. 

70 
potent factors, such as the patient’s 

prognosis, influence how communication affects outcomes. Starting 

with current research on patient-clinician communication, we provide 

a roadmap for future work to study 

relationships between communication and outcomes. 

4.1 Prevention Phase 

Effective interventions for prevention involve much more than 

patient-clinician interactions. 

Because ideally they involve the 

entire population, most prevention 

efforts take a public health 

approach and use mass media to 

disseminate information and foster 

behavior change. Our discussion, 

however, specifically focuses on 

how patient/family-clinician communication can reduce cancer risk. 

Primary care physicians, physician 

assistants, and nurse practitioners 

are the major sources of health 

information related to prevention 

of cancer in health care settings for 

all patients except for patients who 

have a high genetic risk for cancer. 

Primary care clinicians also have 

an important role in motivating 

behavior change. 

4.1.1 Desirable outcomes 

Effective cancer prevention should 

ideally result in a lower risk of 

cancer, as well as a reduction in 

racial, ethnic, educational, and 

tion include use of immunizations 

to prevent cervical cancer and hepatitis B-associated liver cancer and 

the adoption of healthier habits, 

such as smoking cessation, exercise, and sun protection. 

4.1.2 Communication tasks and 

functions 

A large percentage of the population has behavioral risks for cancer 

that are difficult to change and 

require active patient participation 

and motivation. The patient-clinician relationship has an important 

role in fostering behavior change. 

Relationship building during the 

prevention phase should involve 

autonomy-supportive clinician 

behaviors such as active listening 

and encouraging patients to become 

involved in their own care, which 

will help them feel more enabled1,2 

and motivated.3, 4 Clinicians can 

help patients gain access to information about healthy behaviors and 

also can explore patients’ health 

beliefs that are not concordant with 

known prevention strategies.5 

Patients must make decisions 

regarding prevention, the most 

important of which is whether to 

try to change a behavior at all. In 

addition, patients encounter decisions regarding immunizations. 

For example, now that two human 

papillomavirus vaccines are available, many parents must confront 

to adopt healthy behaviors. 

Clinicians also should active

patients adopt healthy behav

One method for enabling pa

is the 5-A model to guide pa

through a behavior change 

process;6,7 the process includ

following: 

• Asking about the behavi

• Advising the patient to c

• Assessing facilitators an

riers to change 

• Assisting (actively) the p

• Arranging for further in

tions and follow-up 

Factors related to the health 

system are also crucial. Clin

practices that are organized 

prevention have been associ

with higher rates of recomm

cancer screening.8 Well-func

ing health care systems can 

vide patients access to cance

reduction programs, includin

counseling on diet, exercise

smoking cessation. In additi

such systems can address cli

cians’ lack of time and the c

ing demands in primary care 

encounters that make it diffi

focus on all relevant health r

is important to note that man

ommended patient self-mana

strategies may be inaccessib

patients with low socioecon

and educational levels unles
4.2.1 Desirable outcomes 

When cancer or precancerous conditions are detected at an early 

enough phase, they are more likely 

to be curable. Early detection can 

also reduce morbidity and suffering for patients who have cancers 

that are not curable. Thus, the most 

important intermediate outcome at 

this phase is the timely completion 

of recommended age-specific and 

gender-specific cancer screening, 

with appropriate follow-up for 

abnormal results. Communication 

about risks and benefits of screening generally occurs within the primary health care domain, whereas 

some screening tests and follow-up 

of positive screening tests often 

involve specialty care. 

4.2.2 Communication tasks 

and functions 

In the United States, many recommended cancer screening procedures are performed on only a 

small percentage of the population.9 

Lack of information may be one 

reason for low screening rates, but 

more often fear, inconvenience, and 

lack of access are the reasons 

patients do not have screening tests. 

In addition, some patients have 

health beliefs that cause them to 

doubt clinical guidelines. For 

example, patients may believe that 

mammography can cause cancer or 

these beliefs may have some basis 

in current or historical fact. 

Communication about screening 

must incorporate several steps. 

Patients must be informed about 

screening and its effectiveness, 

make a decision to schedule a procedure, and navigate their way 

through the health care system to 

have the procedures completed. 

Also, because most screening procedures involve some discomfort 

and inconvenience, clinicians need 

to address patients’ concerns and 

help make it easier to have the procedure completed. For example, a 

patient who is avoiding a 

colonoscopy may benefit from an 

explicit discussion about the tradeoffs: the discomforts associated 

with the procedure versus the presumed benefits. Some screening 

procedures, such as determination 

of serum prostate-specific antigen 

(PSA), are controversial, with opponents suggesting that the test may 

actually lead to worse outcomes. 

Discussions of risks, benefits, fears, 

and uncertainties involving PSA 

testing are necessary, although 

time-consuming. Some patients also 

fear knowing the result of a screening test, considering ignorance better than bad news. Eliciting and 

discussing those fears can improve 

the chance that patients will participate in screening. 

Barriers to screening disproportionately affect disadvantaged, 

ical visits. Racial and e

stereotyping and cultur

ences in language use 

further communication 

Knowledge deficits, fe

tainty, poor access, and 

understanding of proba

mates of risks and ben

improved through effe

munication, which inc

following steps: 

• Clarify the reason 

screening 


• Gain the patient’s 

• Offer tangible help 

gating the health c

• Provide interpreter

• Provide low-literac

informed educatio

Involving family mem

consultation also may 

motivating patients to 

through with screening

4.3 Diagnosis Phase 

4.3.1 Desirable outcom

Effective communicatio

improve the likelihood 

out diagnostic testing, i

patient of the diagnosis

mining initial treatmen

be accomplished quick

delays, and in an enviro

supports the patient’s e

72 
fied with their treatment choices 

and the process by which they 

reached their decisions. Improved 

social support, self-efficacy, and a 

sense of control are important intermediate outcomes as well. Patients 

with a greater sense of confidence 

may make better informed choices 

and may seek the support that they 

need. Confidence also may help 

patients anticipate and plan for the 

disruptions and discomforts of anticancer treatments. 

4.3.2 Communication tasks 

and functions 

During the diagnosis phase, clinicians initially must accomplish the 

following: 

• Assess symptoms that raised 

suspicion of cancer 

• Address patients’ anxiety, fear, 

and sometimes terror at the 

anticipation of a cancer diagnosis, even before communicating bad news 

• Communicate bad news 

clearly and compassionately 

• Involve family members in 

discussions and decisions to 

the degree that it will be helpful and desired by patients 

• Help patients recall important 

information 

• Assist patients with navigating 

their way through the health 

discussions and decisions 

about treatment 

• Assess patients’ desire to participate in decisions 

• Communicate prognosis while 

maintaining hope 

• Help patients make decisions 

about anticancer treatments 

and advance directives 

• Provide support to the patient, 

family, caregivers, and friends 

Mutual understanding and patient 

involvement in the consultation are 

also likely to help patients tolerate 

and follow through with treatment. 

All of these tasks are complex and 

apply to the treatment, survivorship, and end-of-life phases as 

well. Because these tasks often are 

encountered for the first time at 

diagnosis, we discuss them in 

detail in this section. 

The first major communication task 

at the diagnosis phase is either 

assessing symptoms that have 

raised the suspicion of cancer or 

notifying patients of results of a 

positive screening test. Some cancers, such as cancers of the cervix, 

breast, and colon are increasingly 

being diagnosed by routine or targeted screening, whereas other 

common cancers, such as cancers 

of the lung and ovary and hematological malignancies, usually are 

diagnosed in response to patients’ 

reporting of symptoms. The initial 

full diagnostic picture is clea

entire process of diagnosis m

take a day or less, but more o

takes place over the course o

eral days or weeks. Furtherm

patients may need to choose 

(if any) diagnostic procedure

pursue. The choice can be m

difficult if the diagnostic pro

dures are uncomfortable. Pat

experience chaos, terror, and 

ety during this phase, which

turn, affects their ability to a

late information and make ra

decisions. Thus, eliciting and 

dating emotions may becom

important and also more diff

during the advancement tow

definitive diagnosis. 

Patients’ decisions and unde

ings are frequently influence

information from multiple h

professionals, which can som

times be conflicting or uncle

Consider the situation of a p

with a brain lesion that appe

unresectable; a neurosurgeo

gests a brain biopsy to estab

tissue diagnosis, but the biop

associated with a risk of bra

injury, and a radiation oncol

suggests empirical radiother

because, in all likelihood, th

would be the treatment of ch

This case illustrates that som

clinicians cannot provide a d

tive diagnosis or prognosis. 

Although the process of esta

ing a diagnosis is typically a 
phase is delivering bad news. 

Although almost all patients in 

Western industrialized countries 

wish to know their diagnosis, 

patients vary in their desire for 

information about treatment and 

prognosis at the time of the initial 

cancer diagnosis. Clinicians must 

assess how much detail patients 

want. Particularly important is asking patients what role they would 

like their families to play: what 

information should be shared, with 

whom, and when. Ideally, patient 

preferences should be discussed 

before diagnostic testing, but in 

actual clinical practice, that is often 

not the case. Because recall of such 

information is typically poor, providing information in small chunks, 

repeating key points, categorizing, 

summarizing, and checking patient 

understanding are key communication skills.15-19 Audio recordings of 

consultations20-22 and written materials23 may be helpful. 

Managing the strong patient emotions associated with hearing bad 

news for the first time requires 

skillful clinician use of empathy. 

Patients’ emotional well-being 

after a diagnosis is enhanced by 

adequate preparation for the news 

before diagnostic testing, presence 

of friends or family members at the 

consultation, discussion of the 

patient’s feelings, and clear information presented in oral and written formats.24,25 Patients fear that 

they will face these challenges 

easy and often is done poorly. 

However, intensive training in this 

area can improve physicians’ ability and willingness to share bad 

news in ways that optimize information transfer, emotional support, 

and the patient-clinician relationship.27-29 Unfortunately, few physicians and other clinicians have 

participated in such training, and 

frequently, participants are not 

those whose skills are the most 

deficient. 

As discussed in Chapter 2, delivery 

of bad news also may occur later in 

the cancer care continuum. The 

recurrence or metastasis of a tumor 

that had been presumed cured may 

be emotionally devastating to the 

patient, require management of 

information and uncertainty, and 

involve treatment choices about 

which less is known than primary 

treatment at the time of initial 

diagnosis. Complex navigation of 

the health care system may be necessary to get additional expert 

opinions from sources outside the 

institution. 

The third major communication 

task during the diagnosis phase is 

making decisions about the initial 

anticancer treatment. In some 

cases of slow-growing cancers, 

patients choose to forgo anticancer 

treatment entirely or opt for watchful waiting if it is possible that the 

risk of treatment-related complications will exceed the therapeutic 

recommendations 

• Patient feels inform

knowledgeable 

• Patient later regret

decision
 

• Patient participate

or her desired leve

involvement 


These intermediate out

contribute to increased 

self-efficacy, and a hig

hood that adequate trea

be completed.30,31 

Making decisions depe

availability of adequate

friendly information.32 

related to the patient, c

health care system affe

quality, and quantity o

tion patients can obtain 

illness and its treatmen

who are more active co

tors tend to get better q

mation from their phys

addition to obtaining in

from their physicians, 

information from a var

sources: other health p

family, friends, the me

and, especially, the Int

though patients trust th

cians more than inform

the Internet, they tend 

for information before 

cancer consultation.34 W

searching the Internet, 

may be frustrated by th

useful information, con

74 
quality of these other sources. 

However, even clinicians can disagree with each other. In those situations, patients with strong 

relationships with their family 

physicians and other primary care 

professionals may rely on them for 

advice, or, alternatively, may seek 

additional opinions from specialists or lay sources. 

Presenting probabilistic information about treatment effectiveness 

and prognosis is challenging,36 as 

discussed in Chapter 2 (and in 

detail in Appendix B). Because 

patients and clinicians may understand semiquantitative words, such 

as “rare” and “mild” differently,36 

clinicians should be explicit and 

use graphics and written materials 

as well. Patients with low literacy 

generally need explanations in a 

face-to-face setting, especially for 

probabilistic information, and even 

then may not fully understand.10 

Written, video-based, or Internetbased decision aids can help to 

clarify options and can affect 

patients’ choices, sometimes paradoxically decreasing willingness to 

follow recommended guidelines 

when the absolute reduction in risk 

is low.37 An important area for future 

research is the effect of decision 

aids on patient-clinician communication; very little is currently known.38 

Information is necessary but not 

sufficient for decision-making;32 

patients and clinicians need to 

clinician makes decisions unilaterally, or consumerist models, in 

which the patient is an independent 

agent who uses the clinician only 

for advice. Nearly all patients, 

when given the opportunity to participate and express their preferences, tend to favor some degree of 

involvement in decision-making. 

Patients frequently do not want to 

take the responsibility for making 

decisions yet want to be involved 

and to participate in their care in 

meaningful ways.39 Patients with 

recently diagnosed cancer may be 

cognitively compromised because 

of the terror of the initial diagnosis, fatigue and other symptoms, 

family pressure, and information 

overload. Thus, they may not participate at levels that they might 

have anticipated.40 Although 

patients retrospectively may appreciate clinicians’ efforts to help 

them participate more actively, clinicians also must have the flexibility to recognize when they are 

imposing an unwanted burden of 

responsibility on patients.41 

However, reviews of interventions 

to increase patient involvement in 

decision-making (summarized in 

Appendix E) suggest that the 

degree to which patients achieve 

their preferred role in decisionmaking does not always lead to 

increased satisfaction or a lower 

level of anxiety. Rather, the quality 

of the interaction and the relationship may be more important— 

4.4 Treatment Phase 

During the treatment phase, 

patients and clinicians conti

discussions about planning a

participating in anticancer tr

ments. Patients frequently ex

ence uncomfortable side eff

such as fatigue, nausea, and 

yet these may go unreported 

unaddressed. Patients may w

discuss changing or stopping 

ment depending on the initia

response and side effects. 

4.4.1 Desirable outcomes 

Effective communication ca

encourage patients to compl

surgical treatment and/or rec

adequate doses of chemothe

agents or radiation. Better co

nication can lead to lower le

anxiety and depression, few

effects, greater social suppo

success in finding meaning.4

Completion of adequate trea

and attention to psychosocia

issues are both associated w

improved survival and health

related quality of life. Conve

poor communication may be 

tially responsible for the ina

quate treatment more comm

seen in minority populations

patients with low health liter

Patient factors that influence 

munication include access to 

expectations, trust, and level 

activation. 
stronger relationships with them. 

When patients have strong relationships with members of the 

treatment team, they may receive 

information and social support that 

help them tolerate transient fatigue 

and nausea and adjust to disfigurement and disability. Patients should 

feel that information was shared in 

ways that they could understand 

and recall to help them make 

informed decisions. Clinicians can 

help patients take charge of aspects 

of their care, gain access to needed 

treatments and services, and prepare 

for long-term care and surveillance. 

Addressing uncertainty and worries about the future are important 

at this phase but are rarely 

addressed. Clinicians often do not 

detect patients’ emotional concerns, often leading patients to stop 

raising the issues.49 The nature of 

worries during the treatment phase 

may also differ from that during 

other phases, and patients may be 

afraid even to mention concerns. 

Nonetheless, patients commonly 

ask themselves, “Is the treatment 

working?” or “Will I experience 

side effects?” Clinicians should be 

attentive to indirect cues,50-52 initiate conversations with patients 

about their worries, and ask 

directly about patients’ reasons for 

nonadherence or discontinuation of 

treatment.53 Acknowledging 

patients’ emotions,54 expressing 

empathy, giving choices to 

treatment. Clinicians may interpret 

patients’ expressions of discomfort 

differently based on racial or ethnic 

stereotyping, misunderstandings, 

and prior assumptions about 

treatment effectiveness.48 These 

interpretations may result in dose 

reductions that render chemotherapy ineffective or in cessation of 

treatment. 

For patients, communicationrelated factors that contribute to 

these treatment changes include 

the following: 

• Lack of understanding of clinical evidence suggesting that 

the treatment is effective 

• Lack of understanding that 

lower doses may be equivalent 

to no treatment at all 

• Lack of understanding that 

side effects may be transient 

and reversible 

• Distrust of the clinician, or 

feeling “experimental” 

• Distrust of the evidence on 

which treatment decisions are 

based 

• Information and recommendations from other sources (particularly the Internet) 

• Not feeling understood by the 

clinician 

Survivorship is more c

breast, prostate, colore

gynecological cancers 

other common cancers

lung, pancreas, and bra

for example. Currently

adults with cancer can 

alive in five years.56 

Survivorship has been 

the time from diagnosi

and is divided into acu

and permanent phases.

section, we address the 

and permanent phases, 

begin after initial treatm

surgery, radiation thera

chemotherapy has been 

(usually less than one y

diagnosis). Survivors i

viduals who have had r

after initial treatment, 

have treatment-induced 

and who will have rela

after remission. Surviv

an impact on family, fr

caregivers.60 Many of t

nication issues related 

ship have been discuss

sections on the diagno

ment phases and will n

repeated here. We addr

that arise for patients a

life in the next section

4.5.1 Desirable outcom

Ideally, effective comm

should result in greater 

of maintenance of rem

vention and treatment 

76 
ommended surveillance testing for 

recurrence, and treatment decisions 

made in concordance with the 

patient’s values. Because uncertainty and anxiety are common 

when active treatment is completed, feeling supported and 

understood are important intermediate outcomes on the pathway 

between communication and emotional well-being. 

4.5.2 Communication tasks 

and functions 

The greatest gap between the biomedical perspective (cure or remission) and the patient’s illness 

experience may occur at the survivorship phase. Although the clinician may celebrate that the 

patient has had a response to treatment when the tumor appears to 

have diminished in size or disappeared, the patient may be experiencing residual symptoms and 

other effects of the cancer and its 

treatment. Such symptoms as 

fatigue, paresthesias from neurotoxic chemotherapy, dysphagia 

from chest radiation, lymphedema 

from axillary node dissection, and 

slowed thinking from brain irradiation are rarely totally disabling, but 

they have an impact on quality of 

life and self-image. Many patients 

must learn to live with the results 

of disfiguring surgery and may 

need reconstructive surgery. They 

may experience late effects of can

earning potential62 and difficulty in 

obtaining health insurance. 

Patients and their families continue 

to need information during the survivorship phase. Patients, their 

families, and their work colleagues 

may have the misconception that 

all cancer is fatal; patients may 

interpret any new symptom as a 

harbinger of disease progression 

and may seek frequent diagnostic 

testing for reassurance. Clinicians 

and patients must decide about frequency of follow-up, which tests to 

use for surveillance, and the advantages and disadvantages of extensively evaluating new symptoms. 

Further explanations of prognosis 

may be needed during this phase. 

Patients often want to know the 

likelihood of recurrence and, if the 

cancer recurs, they want to know 

the effectiveness of treatment. 

At some point, most patients fear 

recurrence, and many worry about 

their children’s and other family 

members’ risk for the development 

of the same cancer. Depression is 

common at this phase. However, 

patients may be reluctant to share 

their feelings because they feel that 

they should be glad treatment was 

successful, and others may expect 

them to feel this way as well. 

Because patients tend not to disclose these concerns spontaneously, clinicians need to gain 

patients’ trust and to inquire about 

their concerns. Not surprisingly, a 

an appropriate balance betw

realism and hope is discusse

greater depth in Section 4.6. 

Patients who have had a goo

response to treatment have l

quent contact with health pr

sionals. Patients may have fe

opportunities to get informa

and reassurance and at the s

time need to re-establish a n

life. Family members may b

relieved and may be less rec

to disease-focused discussio

the patient may continue to 

wounded, afraid, and vulner

long after the successful trea

has been completed.59,63 Thu

clinician’s focus must be bo

controlling the disease and o

healing the patient. Healing 

with the willingness and abi

see the illness through the p

eyes as well as through a cli

lens and building a network 

social supports so that the pa

can move ahead with his or 

life. Prior patterns of respon

stress, anxiety, and social su

may predict how patients fac

stresses of survivorship. Cur

however, there is very little e

cal literature that can guide 

cians to communicate more 

effectively with cancer survi
symptoms, should be part of any 

cancer treatment program, regardless of curative intent. However, 

quality of life, rather than postponement of death, becomes more 

of a focus of care for most 

patients with treatment-resistant 

cancer. Clinicians should not 

assume that all patients value particular aspects of quality of life 

equally. For some patients, the 

ability to go to a family event may 

be more important than total relief 

of pain, and for others the ability 

to eat may take on particular 

importance. Thus, clinicians 

should inquire about quality-oflife issues directly. 

4.6.2 Communication tasks 

and functions 

In reviews of the communication 

tasks in end-of-life care, de Haes 

and Teunissen 64 and Tattersall et 

al.,47 noted that the following tasks 

are important: 

• Eliciting information from 

patients about pain and other 

symptoms 

• Providing accurate prognostic 

information while maintaining 

hope 

• Managing strong emotions in 

patients and clinicians 

• Making numerous decisions 

about initiation and cessation 

of palliative chemotherapy, 

• Dealing with patients’ fears of 

abandonment 

• Handling requests from the 

patient and family to use futile 

therapies, to set unrealistic 

goals, or to hasten death 

Information exchange can be problematic in both directions. Patients 

are frequently reluctant to report 

pain for a variety of reasons, often 

because they believe that reporting 

pain represents moral failure or 

weakness. The use of systematic 

questioning and quality-of-life 

questionnaires has helped patients 

to report pain and other 

symptoms.65,66 Even when offered 

the opportunity, however, patients 

may not report symptoms, and 

caretakers may take on the role of 

reporting symptoms and advocating for the patient. Patient passivity 

may be especially evident if the 

patient has cognitive decline, 

which is often noted with advanced 

cancer; in such situations, caretakers may assume the role of surrogate for the patient during 

encounters with clinicians. To 

make matters even more complex, 

families often do not present a unified view on what is best for the 

patient. 

Handling strong emotions is 

another important challenge in 

end-of-life discussions. The 

patient and family may express 

strong positive and negative feel

emotions.67-69 

Managing uncertainty 

most difficult commun

during the end-of-life p

because it involves bal

patient/family-clinician 

one about prognosis an

hope.70,71 Communicati

has three major challen

prognoses apply to gro

illness trajectory will b

each individual. Secon

and their families vary 

wish to know what wil

next. Patients who mig

knowing that they have 

not want to know that 

dying.72 Third, patients 

discomfited by physici

sions of uncertainty; co

the clinician may feel t

she has to assume a po

expressing more than c

known. 

The dialogue on hope 

challenges. Patients ge

to know the truth. How

asked, patients with ter

nesses often still expre

cure.73 Physicians often 

with these wishes by e

or avoiding discussion 

prognosis74,75 even whe

palliative treatments. A

nicians debate whether 

prognostic information 

to engage in “necessar

to soften the blow of a 

diagnosis,76,77 few data 

78 
intent when the patient is dying or 

saying that nothing can be done 

represent paternalism and abandonment, respectively. Although 

clinical guidelines for skillful communication about these issues 

exist,15,78 empirical data are lacking. 

A series of difficult decisions is 

often made during the end-of-life 

phase, perhaps more so than at earlier phases of the disease—and 

there is less evidence to guide each 

decision. Treatment options, 

including experimental treatments, 

must be considered one by one. 

The patient may need to decide 

which clinical outcomes are most 

important; for example, longer survival may come at the expense of 

more treatment-related symptoms. 

Clinicians should raise the issue of 

advance directives, as patients do 

not usually discuss them spontaneously. 

Typically, the family becomes 

more involved during the end-oflife phase. Family engagement in 

decisions varies according to the 

culture and the cognitive capacity 

of the patient. Clinicians must be 

skilled at keeping the focus on the 

patient’s wishes when communicating with anxious family members whose understanding, 

concerns, and values may differ 

from those of the patient.79 

Conflicts within the family about 

treatment goals, resuscitation, and 

hospice care are common. 

lies to engage hospice and 

palliative care teams and to manage home services, pain medications, insurance benefits, and other 

aspects of caretaking. Clear communication among the team and 

with the patient’s family is critical. 

4.7 The Real World of Cancer 

Care 

In Chapter 2, we described a general six-function model of communication, and in Chapter 3, we 

discussed some of the pathways by 

which communication might affect 

health outcomes. In the first part of 

this chapter, we presented a model 

of how the six communication 

functions interact with the six 

phases of the cancer care continuum to affect important health outcomes. In this section, the model 

will be applied to the specific illness trajectories of two patients. 

We suggest that this approach not 

only will bring the model to life 

but also will indicate how the 

model itself is dynamic and adaptable to a variety of particular situations. 

A model is only as good as its 

heuristic value. General models 

should be simple enough to be 

understood but complex enough to 

approximate reality and should be 

applicable to a wide range of situations. All models have limitations, 

and we assure the reader that the 

more central factor in our un

standing of communication 

health. 

Both of our cases are based 

patients, and identifying det

have been removed (Textbox

and 4.2). One purpose of pre

ing these cases is to indicate 

human experience, including 

fering and well-being, does 

necessarily conform to the m

that we create to describe it. 

for some patients, what seem

bad news may provide relief 

finally there is an explanatio

their suffering. In other situa

a single factor, such as lack 

transportation, low health lit

deafness, or cognitive dysfu

may be so powerful that mo

munication efforts are direct

toward overcoming that barr

yet other situations, being w

educated can be a hindrance 

because the emotional capac

deal with uncertainty does n

always match the patient’s in

tual capacity to gather inform

The cases presented here als

highlight that families are in

in the care of each patient w

cancer in a somewhat uniqu

and that each patient and fam

normally encounter multiple 

professionals who also are 

involved in each patient’s ca

somewhat unique way. Lastl

cross-cultural situations, com

cations that otherwise seem 
had a followup mammogram one year after she had discovered a lump in 

the right breast. The right breast was aspirated at that time, and the 

findings were benign. On the follow-up mammogram, a suspicious twocentimeter lesion was found in the left breast. 

difference between a positive scre

and actual disease 

Managing uncertainty: Interpretin

results 

Neither she nor her primary care physician had detected the mass by 

palpation. 

Fostering healing relationships: E

trust, understanding clincians’ lim

Ms. Rodriguez was referred to a large inner-city hospital that did not have 

a regional cancer center and had a lower percentage of Board-certified 

physicians on staff compared with other hospitals in the region. 

Enabling patient self-managemen

Eliminating disparities in access to 

of care 

Diagnosis phase 

The radiologist made an appointment for an ultrasound the next day, but 

the patient did not understand why an ultrasound was necessary and why 

she did not have an aspiration, as she had previously. When the radiologist 

said “suspicious,” Ms. Rodriquez thought he was being evasive. She missed 

the ultrasound appointment because of a lack of transportation. She 

attempted to call the radiology department to reschedule but was 

unsuccessful. 

Making decisions: Involving patie

decision-making. 

Exchanging information: Improvin

knowledge about the diagnostic 

Enabling patient self-managemen

the patient through the health ca

After a two-week delay, Ms. Rodriguez had an ultrasound that suggested a 

solid mass, and she was referred to a surgeon for needle biopsy later that 

week. Although the ultrasonographer mentioned that the mass was 

“solid,” Ms. Rodriguez did not know that the term meant that the mass 

was more likely to be malignant, nor did she realize that it was more 

appropriate for the diagnostic information to be conveyed by the 

physician, not a technician. 

Ms. Rodriguez returned to her primary care physician for a routine 

follow-up visit, but the reports from the ultrasound were not immediately 

available. Seeing that Ms. Rodriguez was distraught, the physician called 

the radiologist to obtain the findings. 

Enabling patient self-managemen

Communicating within the health 

Coordinating involvement of mult

clinicians for the patient’s care 

Exchanging information: Using el

communication technology 

Responding to emotions: Conveyi

and taking action 

The primary care physician explained the need for biopsy and probable 

surgery. 

Exchanging information: Using la

cont’d 

80 
Fostering healing relationships, making 

decisions: Activating patients to ask 

questions and participate in decisions 

She had a visit with a surgeon, the same one who performed the previous 

needle biopsy. She had an idea of what to expect because of her prior 

experience. 

Enabling patient self-management: 

Promoting continuity of care 

She was told that the surgeon would call with the result. However, when 

the surgeon did call, the message was taken by her 10-year-old child, who 

transposed the digits in the phone number. After several tries, Ms. 

Rodriguez did make contact with the surgeon’s physician assistant, who 

informed her that the biopsy was “positive” and that she should plan 

another appointment with the surgeon and to meet with the radiation 

oncologist. She was not sure what “positive” meant but assumed it meant 

that the tumor was cancerous. She was very upset and confused as to what 

would happen next. 

Fostering healing relationships: Conside

family and social factors in communicati

Exchanging information, responding to 

emotions: Delivering bad news clearly a

sensitively 

Exchanging information, fostering heali

relationships: Using in-person vs. telepho

vs. asynchronous communication 

Enabling patient self-management: 

Coordinating involvement of multiple 

clinicians 

She met with the surgeon’s physician assistant, who explained the options: 

modified radical mastectomy or lumpectomy with radiation therapy. She 

was afraid of surgery for three reasons: disfigurement, fear of spreading 

the cancer, and not waking up. She did not share these concerns with the 

physician assistant but otherwise found the meeting helpful and 

informative. 

Responding to emotions: Eliciting and 

addressing patient fears 

Making decisions: Facilitating informed 

decision-making 

She was given an informational pamphlet. It contained several words that 

she did not understand, but with the help of the surgeon’s nurse, she was 

able to get the basic idea to help her decide on lumpectomy plus radiation 

therapy. 

Exchanging information: Using written a

electronic media to reinforce informatio

transfer and informed decision-making 

Treatment phase 

A week later, Ms. Rodriguez had lumpectomy. After the procedure, the 

surgeon explained that he “got it all”; the margins were clean. She 

experienced more pain than she was led to believe she would have. She 

called the surgeon, and her nurse suggested warm compresses. Two days 

later, the pain increased and the incision reopened, draining a copious 

amount of purulent material. 

Fostering healing relationships, exchang

information, responding to emotions: 

Explaining and responding to unexpecte

complications 

Her surgeon saw her later that day but offered no explanation or apology. 

After a course of antibiotics, the wound healed by secondary intention but 

left a scar. 

Exchanging information: Dealing with 

adverse outcomes 

The patient was not offered reconstructive surgery, but a friend later 

suggested that she talk with her surgeon again about it. 

Enabling patient self-management, 

exchanging information: Making use of 

involvement of family, friends, and advo

cont’d on 
Ms. Rodriguez discussed the advantages and risks of chemotherapy with 

the oncologist. The oncologist also discussed other alternatives such as 

oophorectomy and hormone therapy and mentioned that research still is 

being done to determine the best option. She was given an informational 

booklet and asked to call once she had decided on the therapeutic option 

and whether she wanted to proceed. The list of side effects seemed 

frightening, so she did not make a follow-up appointment. She was also 

worried by the word “experimental”; she thought that she would be used 

as a guinea pig. Also, she did not understand the statistics on effectiveness 

in preventing recurrence. 

Exchanging information: Offering b

ation and the skills to process the 

Communicating with patients with 

health literacy 

Responding to emotions 

Making decisions: Communicating 

Fostering healing relationships: Es

and maintaining trust 

The radiation oncologist explained the course of radiation therapy and its 

risks, and, after Ms. Rodriguez provided consent, a five-week course of 

radiation therapy was begun. She came to know and trust the radiation 

oncology technician, and her brief conversations with her each day 

provided some comfort. 

Fostering healing relationships: Lo

level of patient anxiety 

Survivorship phase 

Ms. Rodriguez completed treatment and returned to her surgeon, radiation 

oncologist, and primary care physician for follow-up visits several times in 

the first year, with no indication of recurrence. Nonetheless, having not 

received chemotherapy put her at a 5% to 10% higher absolute risk for 

recurrence. Although she is afraid of recurrence, she and her family never 

spoke of these fears, and she did not initiate discussions of these issues 

with her physicians. If the cancer were to recur, she might blame herself, 

however, for not deciding to receive chemotherapy. 

Fostering healing relationships: Co

communication with multiple clini

Responding to emotions: Address

recurrence 

Managing uncertainty: Interpretin

estimates 

Judging the degree of numerical d

would be meaningful for the patie

*

Although this case is based on a real patient, details have been altered to maintain confidentiality and to avoid 

potentially identifying information. 

can result in serious misunderstandings. In one of the cases presented, a physician’s attempt to be 

honest in saying that a lesion was 

“suspicious” was interpreted as 

evasive rather than informative 

because the patient had inflated 

expectations of medical technology. To lose perspective on these 

individual factors risks missing 

important aspects of healing and 

suffering. These cases illustrate 

how during each patient’s individual trajectory, the six communication functions and the six phases of 

the cancer care continuum frame 

the communication challenges and 

outcomes relevant to the patient, 

clinicians, and family members. 

4.8 Conclusion 

This chapter describes some of the 

desired outcomes of communication during each phase of the cancer care continuum. At each phase, 

relevant outcomes are different, and 

the patient’s and family’s concerns 

change over time. Thu

munication processes t

essary to lead to those 

differ somewhat at eac

However, the phases h

similarities than differe

phases, a strong patien

relationship based on t

respect is important so 

necessary, accommoda

some points and greate

involvement at others. 

although the nature and 

information change du

82 
sense of fullness and bloating developed in the upper left quadrant of the 

abdomen. On the physical examination, there was tenderness in that area 

but no mass was palpated. The findings of fecal occult blood testing were 

negative, as were the results of upper endoscopy and colonoscopy. Blood 

chemistry levels and cell counts were normal. He began to lose weight. His 

physician suspected cancer, which he communicated to the patient. He did 

not communicate that he considered pancreatic cancer most likely. 

different points in the diagnostic proce

Responding to emotions, managing 

uncertainty: Dealing with anxiety until 

diagnosis is clarified 

Computerized tomography (CT) of the abdomen showed a large tumor 

involving the head of the pancreas. The radiologist suggested that it likely 

was inoperable. This information was communicated to the patient by the 

primary care physician. Mr. Groves was not surprised by the news. The 

patient wanted a surgical opinion. He indicated that symptom control was 

more important than life-extending procedures. 

Exchanging information, managing 

uncertainty: Communicating bad news 

Eliciting patient values and wishes

The surgeon suggested that a Whipple procedure might be possible, but 

whether it could be done would be known only after the abdomen had been 

opened. He estimated that the best-case scenario represented a 20% chance 

of long-term survival and a 30% chance of improved quality of life. Mr. 

Groves was devastated and terrified. He had not realized that the prognosis 

was so poor. 

Exchanging information, making decisi

Framing choices to help patients decide 

among options 

Communicating prognosis both accurat

and sensitively 

Responding to emotions: Managing te

Mr. Groves preferred to talk it over with his primary care physician. The 

patient searched the Internet and found data indicating the prognosis was 

worse than the surgeon suggested. The primary care physician contacted 

the surgeon directly, who communicated a more pessimistic picture to the 

physician than he had to the patient. 

Fostering healing relationships: Mainta

trust 

Exchanging information, managing 

uncertainty: Dealing with complex 

ambiguous medical information 

Mr. Groves and his primary care physician discussed and updated his health 

care proxy and living will. His primary care physician offered to help clarify 

the patient’s choices. 

Managing uncertainty: Discussing adva

care planning and end-of-life issues 

Both Mr. Groves and his primary care physician found information about a 

variety of chemotherapy regimens. A further Internet search by the patient 

led to 15 recently published reports, each supporting different regimens of 

palliative chemotherapy. Mr. Groves tried to reconcile the multiple 

conflicting sources of information about treatment effectiveness and 

prognosis. Although he was highly educated, he could not always 

distinguish between terms such as “treatment response,” “clinical 

remission,” “radiographic remission,” and “quality of life improvement.” 

He felt increasingly confused and anxious; the more he searched, the less 

sure and more anxious he became. 

Exchanging information, managing 

uncertainty: Effectively using informati

that patients bring to the consultation 

Enabling patient self-management: Usi

electronic media 

Responding to emotions: Managing an

related to uncertainty and cognitive ov

When Mr. Groves consulted with a local oncologist, he was offered one of 

the palliative chemotherapy options; other treatments were available only 

through clinical trials in other cities. Mr. Groves opted not to have surgery 

but chose to go to a major cancer center in another city to discuss 

experimental options. He would stay with relatives there. 

Enabling patient self-management: 

Facilitating family involvement in care; 

Reducing disparities in access to care 

cont’d on 
Mr. Groves never spontaneously complained of pain and only described a 

sensation of abdominal “fullness.” However, when a daughter visited from 

out of town, she noted that he seemed uncomfortable and woke 

frequently at night. His primary care physician consulted the palliative care 

team, who made a home visit. They suggested a trial of long-acting opioid 

pain medication, which improved the patient’s quality of life and sense of 

well-being. 

Exchanging information: Gatherin

information about the patient fro

members and friends 

Making decisions: Discussing palli

still in the active treatment phase 

Forgotten by the physician, but addressed by the home care nurses and 

clergy, were discussions about the meaning of the illness to the patient, the 

process of dying, and the role of the family. 

Fostering healing relationships, re

to emotions: Introducing psychoso

dimensions into discussions 

End-of-life phase 

Mr. Groves completed three courses of chemotherapy, two weeks apart, but 

worsened clinically. Jaundice and ascites developed, requiring paracentesis 

for comfort. He postponed the fourth and final course of chemotherapy, 

intending to return in a couple of weeks. His appetite and energy waned. 

He required increasing doses of oral opioids to control his abdominal 

discomfort. Mr. Groves and his primary care physician discussed hospice care 

and suspension of further anticancer treatment. 

Exchanging information: Discussin

treatment failure and transition to 

palliative care 

Managing uncertainty: Helping th

articulate end-of-life wishes 

Previously active in making decisions regarding his care, Mr. Groves 

relegated these and subsequent decisions to his girlfriend, who also was his 

health care proxy. He moved to another city (where she lived) and received 

hospice care in the home. 

Fostering healing relationships: 

Accommodating patients’ changin

for involvement in decision-makin

increased family involvement 

Mr. Groves died two weeks later, more rapidly than anyone expected. The 

day after Mr. Groves’ death, the oncologist called Mr. Groves’ girlfriend to 

tell her that he had admired how Mr. Groves coped with his illness and 

recognized the girlfriend’s role in caring for him. 

Fostering healing relationships, re

to emotions: Communicating with 

patient’s family and friends after t

patient’s death 

*

Although this case is based on a real patient, details have been altered to maintain confidentiality and to avoid 

potentially identifying information. 

cer care continuum, information 

still must be delivered clearly and 

clinicians should check whether 

patients have understood. Decisionmaking also changes during the 

cancer continuum in terms of content, impact, and scope; but, in general, patients want to be involved in 

some meaningful way at all times. 

There is tremendous variability 

among patients at any given phase 

of the cancer care continuum. 

Thus, each clinician should attend 

to each individual patient’s illness 

trajectory, needs, capabilities, and 

preferences. Clinical care involves 

one patient at a time. Importantly, 

from a research standpoint, each 

patient represents his or her unique 

model for understandin

particular communicat

iors that are necessary 

his or her survival, fun

and well-being. 

84 
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88
 
This chapter focuses on four major 

methodological issues in studying 

communication in cancer settings: 

measurement of patient-centered 

communication, mediators 

between communication and 

health outcomes, moderators of the 

link between communication and 

health outcomes, and study design. 

5.1 Measurement of PatientCentered Communication 

Psychometrically sound (reliable 

and valid) measures of communication behaviors are essential for 

conducting communication 

research in clinical settings.1 

Reliability refers to the extent to 

which a measure yields the same 

number or score each time it is 

administered. Thus, all other things 

being equal, the measure should 

reflect true change in the attribute 

being measured and not an intrinsic flaw of the measurement itself. 

Reliability is a necessary but not 

sufficient condition for validity of 

a particular measurement. Validity 

is the extent to which an instrument measures what it was 

intended to measure. In order to 

evaluate and support the construct 

validity of communication measures, the specific purpose of each 

measure and hypothesized associations between it and other constructs need to be specified. Also, 

because some overarching models 

of communication, such as the 

patient-centered model, are multifaceted constructs, each measure 

generally will assess some aspects 

better than others. 

Communication can be measured 

with use of a variety of methods, 

including patient report, clinician 

report, peer assessment, observational measures (direct observation, video or audio recording), 

medical records, diaries, and unannounced standardized patients 

(SPs; actors who portray patient 

roles consistently and reliably and 

present covertly in clinical practices with clinicians’ prior consent). Each method has different 

strengths and weaknesses and can 

yield different results. For example, observational measures often 

do not correlate strongly with 

patient perceptions of the same 

encounter as reported in surveys.2 

However, Tisnado et al.3 found 

generally good agreement between 

medical record and patient survey 

data measures of process of care in 

a study of 1,270 patients with diabetes, ischemic heart disease, 

asthma or chronic obstructive pulmonary disease, or low back pain. 

Concordance was best for areas in 

which there was little ambiguity, 

such as medication use, and worst 

in situations requiring interpretation and judgment, such as having 

received “counseling.” Similarly, in 

a study of 500 adults presenting 

with a physical symptom, there 

was good agreement between clini­

*The lead author of this chap

Ron D. Hays, PhD, Professor, 

Department of Medicine, Divi

General Internal Medicine and 

Services Research, University o

California, Los Angeles. 
clinician communicated a diagnosis and prognosis; clinicians 

reported communicating this information in 93% and 78% of visits, 

respectively, compared with patient 

reports of receiving this information in 63% and 43% of visits. 

Such studies do little, however, to 

elucidate the reasons for the discrepancies. It may have been that 

physician use of jargon or patient 

cognitive impairment interfered 

with mutual understanding of the 

information exchanged. Or, 

patients may have understood but 

then forgotten. Also, interpretation 

of some elements of communication may be broad, leading to discrepant reporting on the same 

events. For example, clinicians and 

patients often disagree on whether 

“counseling” occurred during a 

particular encounter, or whether 

“information about prognosis” 

was provided. 

The most commonly used methods 

in communication studies to date 

have been qualitative data from 

interviews and focus groups and 

both qualitative and quantitative 

data from direct observation of 

clinical encounters and from 

patient surveys. Focus groups and 

interviews are useful for eliciting 

perceptions and gaining insight 

into possible reasons for behavior.5 

These techniques help ensure that 

what is important to patients and 

their families is captured. Often, 

Observational approaches have the 

advantage of providing a direct 

view of a sample of behavior. 

However, they can require direct 

observation and audio recording, 

which some clinicians find intrusive. Also, clinicians who are not 

confident about their communication skills may be less likely to 

participate, thus perhaps limiting 

the degree of observed variability 

in clinicians’ communication 

behavior. Although direct observation studies capture the immediate 

experience of the visit, most cannot account for conversations in 

prior visits, nonverbal communication, and the overall experience of 

receiving care. For that reason, 

some studies in which visits are 

recorded on either audio or video 

also involve debriefing of clinicians or patients after the visit to 

clarify the reasons for their own 

actions and their perspectives on 

the other’s communication behaviors.6 Some coding systems have 

third-party coders listen to or view 

audio or video recordings and then 

place the clinician’s and patient’s 

verbal and nonverbal behavior into 

certain categories (e.g., providing 

information, expressing empathy). 

However, these coding systems are 

complex and fail to capture the 

salience of the acts from the participants’ perspectives. Coders 

require substantial training and 

experience. Few such systems are 

based on a particular theory of 

the same communicati

of the same data set (e

centered communicati

decision-making).7,8 O

ical encounters also ca

lyzed qualitatively by 

text-based analytic me

actual encounter or fie

erated by the observer

methods encourage ne

and observations to em

analysis of the data. 

Standardized patients 

been used to capture c

behavior in response to 

identical stimuli. Usin

overcome some difficu

using real patients to s

cians’ communication 

• Clinicians’ patient

case mix and patie

graphics, thus mak

isons among clinic

difficult. 

• Real patients and 

tend to self-select 

modate to each oth

iors over time. 

• The condition in q

occur with low fre

requiring multiple 

tions in order to fi

ones for the purpos

SPs often carry hidden 

recorders, which allow

quent qualitative and q

analysis of the interact

90 
own subjective experience by completing some of the same surveys 

as do patients. Because they learn 

some principles of communication 

and present the identical role to 

multiple clinicians, SPs become 

“connoisseurs of care.”17 Compared 

with real patients, SPs tend to rate 

clinicians more harshly, thus 

avoiding very high mean scores 

characteristic of patient ratings 

(ceiling effects); and rate individual clinicians with higher reliability.17,18 In addition, there are larger 

standard deviations in the scores 

given by SPs compared with those 

given by real patients, thus discriminating among clinicians to a 

greater degree. However, there are 

some limitations of SP-based 

methods: training and deploying 

SPs can be expensive, SP visits by 

nature are first visits to the clinician,19 some physical signs cannot 

be accurately portrayed, and SPs 

normally cannot undergo invasive 

procedures that might occur in real 

clinical settings. 

Patient surveys allow the patient to 

reflect on the effectiveness of communication and the nature of the 

patient-clinician relationship. 

There are numerous scales that 

claim to measure different aspects 

of clinician communication. 

Although patients may be considered the ultimate arbiters of 

patient-centered communication by 

clinicians, their survey responses 

clinician and do not discriminate 

among different aspects of communication; thus measurements of 

different constructs (e.g., trust, 

explanations, listening, autonomy 

support, clinician knowledge of the 

patient) share a substantial amount 

of common variance.20,21 

Ecological momentary assessment 

is a method of collecting data as 

quickly as possible after events 

take place to minimize problems 

with recall.22,23 Using pen and 

paper, the Internet, or handheld 

devices, a patient can record 

answers to survey items or narrative impressions. Different studies 

have used scheduled entries, 

entries triggered by specific events 

(such as a medical visit), or randomly prompted entries. Advances 

in information technology have 

increased the potential use of other 

sources of data for diaries, such as 

entries into shared medical 

records, e-mail text, and mobile 

telephone communications. Much 

more needs to be learned about the 

unique value of each source of 

data, however. 

Although family members are 

present in a large percentage of 

visits,24-26 their input is often not 

recorded or analyzed using observation methods, and the ways in 

which they affect and are affected 

by the patient’s illness often are 

studied only in the context of caregiving at home and burnout. In 

clinical teams caring for the 

patient. However, limited att

has been directed at the asse

of communication among pa

family members, and the he

care delivery team. When fa

members are present during 

more clinical encounters, th

input contributes to the evol

of the conversation. Studies 

family involvement in care o

extend beyond the patient’s 

For example, family membe

tended to perceive that their 

one had a “good death” if th

reported that the health care 

listened and were effective i

explaining the decedent’s co

tion.27 Similarly, the input of 

ple clinicians should be acco

for in some way. In reality, w

dyadic communication may 

during individual encounter

mally the patterns of commu

tion over time are much mor

complex and include the pat

multiple family members (so

whom may also be patients)

variety of clinicians of differ

professional training and spe

ization. Research methods a

design should account for th

work of relationships of vary

intensity between multiple m

bers of the family and the m

clinicians comprising the he

care team. 

Future research on commun

in cancer settings must be de
such as which communication 

function (e.g., fostering healing 

relationships, exchanging information) is assessed, and what is the 

most appropriate source of information for a particular aspect of 

care. A combination of data from 

multiple sources is needed to portray communication accurately 

between providers and patients. 

Studies involving both qualitative 

and quantitative analytic methods 

often yield more insight than studies involving either method alone. 

5.2 Mediators between 

Communication and Health 

Outcomes 

Communication sometimes affects 

health outcomes directly, but more 

often these effects are mediated 

through intermediate or proximal 

outcomes. Pathways between these 

proximal and intermediate outcomes of communication and subsequent health outcomes are poorly 

understood. For example, a patient 

with prostate cancer may decide to 

stop hormone therapy after completing radiation therapy if he 

thinks that his continued need to 

urinate at night means the treatment is ineffective (an illness representation28,29). Nonadherence in 

this case is due to communication 

problems: the patient made a false 

assumption about the treatment 

and did not ask the clinician for 

clarification. Meanwhile, the clini

whereas others are delayed. For 

example, communication interventions that improve adherence to 

chemotherapy for breast cancer 

will increase symptoms and 

decrease quality of life initially30 

but increase the duration of survival. 

Potentially important mediators 

between communication and 

health outcomes were described in 

Chapter 3 and include improvements in patient knowledge, emotional self-management, patient 

empowerment, therapeutic 

alliance, quality of medical decisions, access to care, and social 

support. Mediation can occur 

through more than one pathway. 

For example, a study may involve 

a comparison of two potential 

pathways explaining the effects of 

communication on health outcomes: patient acceptance of treatment and patient self-efficacy. 

Alternatively, the association 

between communication and 

health may be mediated by reaching a high-quality decision (i.e., 

clinically sound and consistent 

with patient values), which, in 

turn, may be mediated by better 

clinician understanding of the 

patient’s disease experience or better patient knowledge about the 

disease and treatment options. 

One or more mediation hypotheses 

can be tested using a stepwise 

process (Figure 5.1). The example 

illustrated in Figure 5.1 is a study 

suggests that an associ

between patient activat

may be mediated by pa

ence to treatment.31 If t

true, visits characterize

communication would 

improved pain relief on

patient took medicatio

scribed, and no such ef

be noted if the patient 

adhere to treatment. In 

assess mediation, a ser

ate models can be estim

whether patient activat

ciated with pain (Mode

line) and adherence (M

dashed line) and wheth

ence is associated with 

(Model 3, dotted line). 

ate model (Model 4) th

adherence and patient 

predict pain should sho

direct effect of patient 

on pain is smaller than 

Model 1. 

In addition to the stepw

structural equation mo

be used to evaluate me

directly. Structural equ

eling permits the simu

assessment of multiple 

variables and both dire

rect effects of one vari

another. Each variable 

treated as both an inde

variable and a depende

This approach allows t

tion of latent variables 

only measured variable

92 
activation on pain is smaller than it was in Model 1. 

Patient 

Activation 

Pain 

Adherence 

Model 1 

Direct Pathway 

Model 4 

All Pathways 

Model 2

Mediated Pathway 

Model 3

Mediated Pathway 

thereby accounts for random error. 

For example, structural equation 

modeling was used to provide support for a conceptual model of 

health-related quality of life developed by Wilson and Cleary.32 Used 

with analysis of data on patients 

after myocardial infarction structural equation modeling demonstrated that the severity of cardiac 

disease influenced health-related 

quality of life through two pathways. The first, a direct pathway, 

was not mediated, whereas the second, an indirect pathway, was 

mediated by the presence of 

patient-reported symptoms.33 

Communication functions also can 

serve as mediators of health outcomes. A recent study of 272 

health plans showed that the percentage of clinical care delivered 

by staff and group model systems 

(rather than independent practice 

association and network models) 

was significantly related to higher 

rates of immunization and of 

screening for cervical and breast 

cancer, heart disease, and diabetes. 

However, the type of health care 

system was not related to patient 

reports and ratings of care.34 Thus, 

although communication may have 

contributed to better preventive 

care through other pathways, communication (measured from 

patient’s perspective) did not 

explain the relationship betw

the type of system and preve

care. These findings suggest 

research is needed to find ch

in health care systems that m

able to enhance the provision 

patient-centered communica

These changes may include r

ing care at a comprehensive 

care center, having a health c

team to facilitate access to in

tion, and having a “medical h

where the patient could do o

shopping for coordination of 
and outcomes were discussed in 

Chapter 3 (and listed in Table 3.4). 

Moderators are variables that qualify associations of independent 

variables with a dependent variable. A moderator is identified 

when there is a significant interaction between two independent variables in a regression model. For 

example, the use of health care 

navigators to help patients receive 

adequate follow-up after abnormal 

findings on cancer screening tests 

may improve health outcomes for 

poor patients but not for wealthy 

patients. Similarly, interventions to 

improve patient participation in 

clinical care may have different 

effects depending on the patient’s 

level of education. Education 

would be a moderator of the relationship between patient participation in the consultation and 

subsequent satisfaction with care if 

patient participation had a positive 

effect on satisfaction for those with 

at least a high school degree, and 

patient participation had a nonsignificant effect for those without 

a high school degree. 

In research on physiological mechanisms, factors (such as blood 

pressure) can often be clearly classified as mediators, moderators, or 

outcomes. In behavioral research, 

however, the situation is more 

complex.35 Patient trust in the 

physician, for example, can be 

considered a mediator, moderator, 

or outcome, depending on the situ

choose to undergo psychotherapy 

only if their level of trust is sufficient. In other circumstances, trust 

in the physician may be a moderator; trust would moderate the relationship between recommending 

treatment and actually taking it, if, 

for example, patients with high 

levels of trust are more likely than 

patients with lower levels of trust 

to take medication as prescribed. 

Trust is also an intermediate outcome if it is on a pathway linking 

communication with a health outcome such as lower levels of anxiety. Decisions about whether a 

particular variable is a mediator or 

moderator may be based on theoretical reasons, such as testing a 

model predicting either the mediating or moderating effects of trust, or 

on empirical evidence, such as trying 

to uncover reasons why a hypothesized communication-outcome 

relationship did or did not occur. 

5.4 Study Design 

Most research on communication 

in cancer settings is cross sectional, primarily because such 

studies are less expensive and easier to do than longitudinal studies. 

In contrast, longitudinal studies 

provide a stronger basis for 

demonstrating the development of 

patient-centered behaviors over 

time and for drawing causal inferences between communication 

processes and health outcomes. 

randomized factor(s) t

affect the outcome are 

by the random assignm

patients to conditions. 

ized controlled trials o

cation interventions ar

challenging because o

plexity of intervention

involve patients, clinic

health care systems. In 

tions, clinical trials can 

tical, impossible for et

reasons, or prohibitive

Most randomized clini

represent a distortion o

practice in a number o

can give a false impres

effect of treatment at a 

level. Also, care provid

context of a randomize

more consistent and m

monitored than care in 

nity. In addition, partic

have characteristics th

complicate the interpre

intervention effects (e.

comorbid illnesses com

associated with the ind

tion) are excluded. As 

participants in clinical 

substantially from pati

not participate.36 Henc

ized clinical trials can 

what is possible (i.e., e

rather than what actua

pen when an intervent

mented beyond the con

trial. The findings mig

alize to care once it is 

in other less controlled 

94 
are not under the investigator’s 

control (e.g., delays in care, inability to afford a medication), in order 

to provide a basis for plausible 

inferences about underlying mechanisms. Because of the weaker 

study design, making sense of 

associations is more difficult in 

nonrandomized studies. 

Case-mix adjustment can help by 

statistically equating naturally 

occurring groups on variables such 

as age, education, and indicators of 

health (e.g., comorbidity) that are 

measured at baseline. But case mix 

cannot account for some factors, 

such as unmeasured burden of illness; in effect, the observed differences are the result of an unknown 

combination of disease state, treatment effect, and patient and clinician behavior. These factors make 

inferences about the effects of an 

intervention difficult. For example, 

in the Medical Outcomes Study, 

detection of depression was not 

significantly related to mental 

health outcomes. This nonsignificant result was due in part to the 

fact that sicker patients tended to 

receive more intensive care, which, 

in turn, increased recognition and 

treatment of other conditions such 

as depression. Because the 

Medical Outcomes Study measures 

of sickness failed to fully capture 

this factor,37 standard analyses 

showed no effect. Standard analyses also can show a paradoxical 

account for unmeasured burden of 

illness.39 

Multicomponent interventions are 

likely to be more successful than 

testing of individual elements 

(“molar” approach). Although each 

individual element may have a 

small effect, interventions that 

focus on synergistic approaches at 

multiple levels of the health care 

system (patients, clinicians, care 

managers, system design) may 

have a cumulatively larger effect. 

For a variety of reasons, studies of 

interventions targeted to more than 

just the patient or the clinician are 

rare, as are interventions that 

include family members and multiple clinicians. Because patients 

with cancer meet with multiple 

health professionals, studies of 

patients’ experiences over time 

require designs of clinicians nested 

within patients; most prior studies 

have designs in which patients are 

nested within clinicians. Also, the 

unit of analysis for system interventions generally should be the 

health care system. 

5.5 Conclusion 

For designing studies in cancer 

communication research, much can 

be learned from innovative 

approaches to measurement, conceptual models, and study design 

in other areas of research. The role 

of mediating and moderating vari

structural equations, and ins

mental variable models may 

sort out the complex networ

factors that influences the re

ship of communication beha

subsequent health outcomes
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(9) Carney PA, Eliassen MS, Wolford 

GL, et al. How physician communication 

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(10) Epstein RM, Franks P, Shields CG, 

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(12) Kravitz RL, Franks P, Feldman M, 

et al. What drives referral from primary 

care physicians to mental health specialists? A randomized trial using actors portraying depressive symptoms. J Gen Intern 

Med. 2006;21:584-589. 

(13) Kravitz RL, Epstein RM, Feldman 

MD, et al. Influence of patients’ requests 

for direct-to-consumer advertised antidepressants: a randomized controlled trial. 

JAMA. 2005;293:1995-2002. 

(14) McLeod PJ, Tamblyn RM, Gayton 

D, et al. Use of standardized patients to 

assess between-physician variations in 

resource utilization. JAMA. 

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(15) Tamblyn R, Berkson L, Dauphinee 

WD, et al. Unnecessary prescribing of 

NSAIDs and the management of NSAIDrelated gastropathy in medical practice. 

Ann Intern Med. 1997;127:429-438. 

(16) Tamblyn RM. Use of standardized 

patients in the assessment of medical practice. CMAJ. 1998;158:205-207. 

(17) Srinivasan M, Franks P, Meredith 

LS, et al. Connoisseurs of care? 

Unannounced standardized patients’ ratings of physicians. Med Care. 

2006;44:1092-1098. 

(18) Fiscella K, Franks P, Scrinivasan 

M, Kravitz RL, Epstein R. How do real 

and standardized patient ratings of physician communication compare? Ann Fam 

Med. (in press) 

(20) Franks P, Jerant AF, 

al. Studying physician effec

outcomes: physician interac

performance on quality of c

Soc Sci Med. 2006;62:422-4

(21) Franks P, Fiscella K

et al. Are patients’ ratings o

cians related to health outco

Med. 2005;3:229-234. 

(22) Patrick K, Intille SS

An ecological framework fo

munication: implications fo

Med Internet Res. 2005;7:e

(23) Bolger N, Davis A, 

Diary methods: capturing li

Annu Rev Psychol. 2003;54

(24) Shields CG, Epstein 

K, et al. Influence of accom

ters on patient-centeredness 

patients. J Am Board Fam P

344-354. 

(25) Flocke SA, Goodwi

KC. The effect of a seconda

the family practice visit. J F

1998;46:429-434. 

(26) Ballard-Reisch DS, 

Centering families in cance

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of support, culture and proc

provider communication in 

management. Patient Educ 

50:61-66. 

(27) Curtis JR, Patrick D

RA, et al. A measure of the 

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Interventions for Cancer. Washington, DC: 

American Psychological Association; 

2001:375-400. 

(29) Leventhal H, Diefenbach M, 

Leventhal EA. Illness cognition: Using 

common sense to understand treatment 

adherence and affect cognition interactions. Cogn Ther Res. 1992;16:143-163. 

(30) Martin M, Lluch A, Segui MA, et 

al. Toxicity and health-related quality of 

life in breast cancer patients receiving 

adjuvant docetaxel, doxorubicin, 

cyclophosphamide (TAC) or 5-fluorouracil, doxorubicin and cyclophosphamide (FAC): impact of adding primary 

prophylactic granulocyte-colony stimulating factor to the TAC regimen. Ann Oncol. 

2006;17:1205-1212. 

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Meyers FJ. Individualized patient education and coaching to improve pain control 

among cancer outpatients. J Clin Oncol. 

2001;19:2206-2212. 

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on clinical quality and patient satisfaction. 

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98
 
T

his monograph provides a 

framework for understanding 

how patient-centered communication can further the National 

Cancer Institute (NCI)’s mission to 

improve survival and enhance 

quality of life for those affected by 

cancer. In particular, health-related 

quality of life can be improved 

when clinicians are attentive to 

patients’ symptoms, functioning, 

and well-being in the physical, 

emotional, and social domains1 

across the cancer care continuum. 

However, improvements in survival and quality of life require 

effective communication among 

clinicians, patients, and family 

members in a health care system 

that fosters continuous healing 

relationships and care that is customized to meet patients’ needs.2 

Patient-clinician communication is 

especially important in cancer settings because of the levels of 

stress, uncertainty, complex information, and life-altering medical 

decisions that exist in such settings. Effective communication can 

ameliorate suffering directly, by 

enhancing the patient’s emotional 

well-being, and indirectly, mediated by factors such as social support and adherence. Thus, it is 

important to understand how to 

improve communication between 

patients and their family members 

and the health care delivery team. 

The importance of communication 

as a means of achieving the best 

health outcomes for patients is further underscored by the Institute of 

Medicine (IOM) report, “Crossing 

the Quality Chasm,” which identifies “patient-centeredness” as one 

of six key ways to improve health 

care and notes that “continuous 

healing relationships” are a means 

for achieving that goal.3 

This monograph has focused on 

optimizing the communication 

process between the patient/family 

unit and the health care delivery 

team. Because the family is central 

to patient care and because patients 

normally are seen by clinicians of 

different disciplines at various 

phases of the illness, we have used 

the term patient-clinician communication throughout the monograph as 

a proxy for communication between 

the patient/family and the health care 

team. By clinicians, we refer to all 

professionals who provide care to 

patients within the cancer context. 

By family, we refer to people in the 

patient’s social circle who are most 

relevant to the patient, regardless of 

whether they are biologically related. 

Patient-clinician communication was 

discussed within the context of the 

phases of the cancer care continuum, 

primarily the phases from screening 

to survivorship and end of life. 

Cancer prevention is important but is 

beyond the scope of this monograph. 

This chapter provides a brief summary of the overall monograph, a 

discussion of the gaps in the literathrough 5: Basic Principles, 

Functions, Mediators and 

Moderators, and Methodological 

Challenges 

Chapter 1 presents the basic principles of effective communication 

in cancer care. These principles are 

based on a philosophy of patientcentered care that embraces three 

core values: considering patients’ 

needs, perspectives, and individual 

experiences; providing patients 

with opportunities to participate in 

their care; and enhancing the 

patient-clinician relationship.4 

Patient-centered communication is 

characterized by verbal and nonverbal behaviors that are intended 

to accomplish the following:4-6 

Listen Disclose needs 

Avoid interruptions Share information a

symptoms and conc

Organize the visit Share information a

culture, and context 

Solicit patient’s beliefs 

and preferences Discuss expectations

• Elicit, understand, and validate 

the patient’s perspective (e.g., 

concerns, feelings, expectations) 

Elicit and validate patient’s emotions Voice concerns 

Provide clear and 

jargon-free explanations Discuss options 

Offer encouragement and support Ask questions 

Table 6.2 Examples of Important Outcomes Related t

Patient-Clinician Communication 

Outcomes 

Proximal Accurate transfer and understanding 

information 

Recognition of and appropriate resp

to emotional distress 

Establishment of trust and respect 

Mutual and cooperative participatio

the consultation 

• Understand the patient within 

his or her own psychological 

and social context 

• Reach a shared understanding 

of the patient’s problem and its 

treatment 

Intermediate Adherence to clinical guidelines 

Patient satisfaction 

Patient self-efficacy • Help a patient share power by 

offering the patient meaningful 

involvement in choices relating to his or her health 

Distal (Health) Improved survival 

Enhanced quality of life 

Reduction in health disparities 

Improved quality of care 

Decreased health care costs 

• Build strong patient-clinician 

relationships characterized by 

mutual trust, respect, and commitment 

100 
p

Patient-clinician agreement about each others’ 

roles and expectations 

Exchange information Recognize patients’ information needs See Appendix 

Integrate clinical information with the patient’s 

illness representations (explanatory models)7-9 

Acknowledge both the content and process of 

information exchange 

Use Internet-based resources10 

Communicate prognostic information accurately 

while also providing hope 

Overcome barriers related to low health 

literacy and poor understanding of statistical 

information 

Respond to patients’ emotions Elicit patients’ emotional distress See Appendix 

Communicate an understanding of the patient’s 

emotions to him or her 

Respond with legitimation, validation, 

empathy, and support 

Manage uncertainty Acknowledge uncertainty, to allow space 

for hope11 

Recognize that uncertainty often cannot be 

eliminated 

Help to manage uncertainty by providing 

information, support, and cognitive strategies 

Make decisions Consider the active involvement of the See Appendix 

patient and family in the information-exchange 

and deliberation stages of the decision-making 

process 

Identify who is responsible for the final decision 

Enable patient self-management	 Advocate for the patient, including help in 

navigating the health care system 

Support patient autonomy 

Provide guidance to patients about finding 

information, developing coping skills, and 

taking actions to improve their health 
Individual communication skills 

alone are not sufficient. Clinicians, 

patients, and families must align 

themselves toward common goals; 

adapt their communication styles to 

achieve mutual understanding; be 

willing to reconcile differences due 

to beliefs, language, or culture; and 

deliberate together over difficult 

decisions. Although individual 

behaviors have been the subject of 

communication research, the 

process of alignment rarely has been 

studied. Communication should be 

oriented toward outcomes, especially health outcomes, such as 

improved survival and meaningful 

enhancements of health-related 

quality of life (Table 6.2). 

Chapter 2 sets forth a framework 

for research on patient-centered 

communication in cancer care, 

with a discussion of six fundamental functions of communication. 

These functions are not necessarily 

hierarchical; rather, they overlap 

and interact (Table 6.3). (See 

Figure 2.1, page 19.) 

Chapter 3 explores pathways by 

which communication can lead to 

improved outcomes, including 

mediators and moderators. (See 

Figures 3.1 [page 41], 3.2 [page 

47], and 3.3 [page 52]; Tables 3.1 

[page 40] and 3.4 [page 53].) Two 

sets of pathways were discussed— 

those that lead directly from communication to health outcomes, and 

Intrinsic	 Relatively immutable 

Age 

Sex 

Personality 

Health beliefs 

Potentially mutable 

Illness representations 

Knowledge 

Attitudes 

Relationships among the pati

family members and health ca

Extrinsic	 Nature and phase of the illne

Cultural factors 

Social support 

Health care system 

Medium of communication 

(e.g., electronic, face-to-face) 

Legal and regulatory factors 

those that are mediated, i.e., pathways consisting of one or more 

links between a communication act 

and a given outcome of communication. Proximal outcomes form 

the first link and might include 

improvements in the following: 

• Access to care 

• Patient knowledge and shared 

understanding 

• Therapeutic alliances (i.e., 

patient and clinician commitment to the relationship) 

• Emotional self-management 

• Family/social support and 

advocacy 

• Quality of medica

(e.g., informed, cl

sound, concordant 

values, and mutua

• Patient agency12 (s

empowerment, an

enablement13-15) 

These pathways link e

communication to inte

outcomes such as impr

ence, health habits, an

Chapter 3 also address

tors, factors that influe

tionship of communica

proximal, intermediate

(health) outcomes. (Se

page 53.) Moderators 

102 
tionship) (Table 6.4). Researchers 

often identify fixed moderating 

variables such as age and gender, 

but little is known about why such 

variables affect the relationship of 

communication to patient health 

outcomes. For example, age may 

moderate the relationship between 

Prevention Foster health behaviors and promote 

prevention interventions as appropriate 

Diagnosis	 Provide emotional support and information 

Discuss areas of uncertainty and prognosis 

Encourage patient participation in care 

Treatment	 Provide emotional support 

Provide treatment-related information 

Encourage patients to complete treatment 

regimens 

Enhance social support 

Chapter 4 places each of the functions and pathways described in 

Chapters 2 and 3 in the context of 

each phase on the cancer care continuum and provides details about 

the communication needs; mediators, moderators; and proximal, 

intermediate, and distal (health) 

outcomes at each phase (Table 6.5). 

an important degree at the d

sis phase, it may be less cru

during the end-of-life (pallia

care) phase. 

Chapter 5 discusses method

cal challenges to studying co

nication in cancer settings. M

descriptive studies have been 

sectional and have relied on 

methods. Longitudinal studi

mixed-method studies, and s

involving multiple sources o

are relatively uncommon bu

needed to establish causal li

between communication and 

comes. Measuring commun

is challenging because of se

factors: the lack of theoretica

driven measures, discrepanc

findings depending on how 

vational data are coded and 

lyzed, and relatively weak 

correlations between ratings 

audio recorded encounters a

patients’ subsequent ratings 

same encounter. The chapte

discusses the need to develo

robust measures of proxima

mediate, and distal (health) ou

and of the processes accoun

the effects of moderators. 

Table 6.5 Examples of Clinician Communication Behaviors that 

Can Improve Survival and Enhance Quality of Life 

during Each Phase of the Cancer Care Continuum 

Phase	 Clinician Behavior 

Screening Promote efficacious cancer screening practices 

and follow-up 

Survivorship	 Help patients manage uncertainty 

Facilitate coping, functioning, and well-being 

Watch for signs of recurrence 

Help patients adhere to recommendations for 

ongoing surveillance, prevention and treatment 

End of life	 

(palliative care)	 

Help patients make decisions concordant with 

their values 

Involve and address the concerns of family 

members 

Provide optimal palliation to improve overall 

quality of life 
descriptive to prescriptive models 

—Implementing theories of 

patient-centered communication 

From a theoretical standpoint, 

three issues require further study: 

the descriptive models of patientcentered communication, communication improvement models, and 

communication theories that incorporate and inform general theories 

of health behavior and health 

psychology. 

Descriptive models of patient-centered communication must be 

developed more fully. Although 

there is general agreement about 

the goals and components of 

patient-centered communication,4,6,17 defining it as a set of discrete behaviors is difficult because 

communication is always interpreted individually within its context. Patient perceptions of care do 

not completely characterize 

patient-centered communication 

either. Their perceptions may relate 

more to overall impressions of 

their care and the clinician than to 

specific features of patient-centered communication.4 In addition, 

the elements of patient-centered 

communication are not necessarily 

correlated, suggesting that patientcenteredness is a multidimensional 

construct. For example, a clinician 

expressing empathy and support is 

practicing a form of patient-centered behavior. However, this 

behavior may occur independently 

There is a need for a communication improvement model that 

defines specific measurable elements of communication empirically linked to outcomes. These 

elements should then guide the 

development of interventions. 

Thus, the model should be evidence-based as well as theorydriven. To that end, effective 

communication would be judged 

on the basis of its ability to achieve 

a particular intermediate outcome 

or distal (health) outcome and provide a plausible explanation for 

this effect. For example, decisionmaking processes may be defined 

as patient-centered if they result in 

improved rapport, shared understanding, and appropriate followthrough. Ingredients of a “good” 

decision may include patient-clinician discussions of values, goals, 

clinical evidence, and illness representations and risks and subsequent patient-clinician agreement 

that the best possible decision 

was reached. 

Theories of communication that 

incorporate and inform general 

theories of health behavior and 

health psychology7 are needed to 

explain the relationship of communication to outcomes. Consider 

examples of such integration. 

Through their interactions with 

family, friends, various media, and 

clinicians, patients construct illness 

representations,18 otherwise known 

as explanatory models9 or “lay” or 

tions are important in c

because they influence 

sions (e.g., whether to 

low through on care) a

mechanisms. Commun

linked inextricably to i

sentations because the

els can be constructed, 

or modified during pat

cian encounters. More

crepancies between cli

views of the patient’s h

the patient’s own healt

contribute to poor outc

as inappropriate decisi

adherence to treatment 

ety and distress, and di

care. These discrepanc

likely in cross-cultural 

further emphasizing th

incorporate cultural co

into general communic

skills training. 

Communication conce

should be integrated w

of self-efficacy,23 self-d

tion,24 enablement,13-15 a

to show how communi

transform patients from 

recipients to active par

care and enable them t

more active role in ma

own illnesses. Relation

tered care is another co

may contribute to a the

communication contrib

health outcomes.25 

104 
• Greater attention to 

– Men 

– Racial and ethnic 

minorities 

– Low-education and 

low-literacy populations 

– Older patients 

– Gender concordance 

between clinician and 

patient 

– Family members and 

different family 

structures 

– Wider variety of cancers 

Clinicians 

• Continue to study 

oncologists 

• Greater attention to 

– Surgeons 

– Radiation oncologists 

– Interventional 

radiologists 

– Primary care clinicians 

– Nurses 

– Hospice workers 

Settings 

• Continue to study settings 

of outpatient oncology 

offices and clinics 

• Greater attention to studies in 

– Hospitals 

– Hospice settings 

– Long-term care 

facilities 

– Patient homes 

white women, with at least a high 

school education. Racial, ethnic, 

and educational factors contribute 

to significant disparities in access 

to care, delayed diagnosis, and 

completion of treatment,26-34 yet 

only a few studies in the literature 

on cancer prevention and decisionmaking have been designed to 

evaluate communication factors 

that may contribute to those disparities.35 Although studies have 

tended to focus on middle-age 

adults, older patients have different types of cancer and these cancers follow a different clinical 

course. Younger and older patients 

with cancer appear to have contrasting communication styles, yet 

few studies compare their communication needs and behaviors.16 

Even fewer studies have examined 

why the communication styles of 

older patients differ from those of 

their younger counterparts. As previously noted, reasons might 

include educational, cognitive, attitudinal, or disease-related factors. 

Gender and gender concordance 

have been studied in greater detail, 

but reasons why these affect communication and outcomes have not 

been studied. Families are essential 

sources of information, support, 

and caregiving for patients with 

cancer, yet communication 

between family members and clinicians has been studied inadequately.36 Little is known about 

how different family structures 

ties, older than age 70, or ha

lower educational levels and 

health literacy. By understan

pathways that contribute to s

disparities as different illnes

resentations, literacy levels, 

health care system factors, i

ventions can be developed to 

or eliminate disparities in ca

Cancer communication stud

clinical settings have primar

focused on patients with spe

types of cancer, especially b

cancer and, to a lesser exten

prostate and colorectal canc

Fewer studies have involved 

patients with more lethal can

such as cancer of the lung, pa

or ovary. The type of cancer 

important element of contex

likely affects patient-clinicia

communication and the rela

ships between communicati

and outcomes. Research sho

include patients with a wide

variety of cancers. 

Clinicians 

The majority of cancer comm

cation studies have involved 

ical oncologists. Fewer stud

have included surgeons and 

still, radiation oncologists, i

ventional radiologists, prima

care clinicians who care for 

survivors, and hospice work

substantial body of nursing l

ture on cancer communicati

exists, but few of the studies 

involve large enough sample
beyond the interactions of individual clinicians with patients and 

their families. Clinician stress and 

burnout appear to have a negative 

effect on the quality of care.37-39 

Healthy approaches to stress theoretically can be developed through 

clinician, patient, and system interventions,40-42 but these have not 

been studied in-depth. 

Settings 

Settings for communication research 

generally have been outpatient 

oncology offices and clinics. 

However, hospitals can be even more 

stressful for patients and families, 

and research should be done with 

patients in that setting. Studies 

should also be done in other settings, 

including homes, hospice settings, 

or nursing homes to get a richer 

understanding of communication. 

6.2.3 Descriptive research 

(Table 6.7) 

More often than not, descriptive 

research on cancer communication 

has been cross-sectional, has been 

conducted in outpatient settings, 

has involved patients during the 

diagnosis and treatment phases, 

and has focused on a few specific 

communication tasks, such as the 

following: 

• Patient self-assessed information needs and availability of 

and preference for different 

information sources 

ering bad news and patients 

preferences for delivery of 

ad news 

• Accuracy of physician statements about prognosis and 

patient preferences regarding 

frank disclosure of prognostic 

information 

• Correlates of patient preferences for and achievement of 

preferred roles in decisionmaking and the effect of dif

of emotional distre

Most descriptive studie

communication have in

patients with breast can

lowed by patients with 

and prostate cancer, wi

ies involving patients w

of cancer that carry po

noses. Cross-sectional 

tion studies have invol

of patient surveys and 

of audio recordings of 

tions with utterance-ba

Table 6.7 Recommendations for Descriptive Research 

• Characterize and study effects of continuous healing 

relationships 

• Analyze patient narratives of illness experiences 

• Understand effects of family involvement in clinical 

consultations in the interpretation of information, inv

in decisions, and caretaking 

• Characterize current use of electronic media as an adju

instead of face-to-face communication, including e-ma

medical records, and the Internet 

• Understand how patients experience and deal with inf

overload and associated confusion and anxiety 

• Understand how communication affects social support 

and outside the patient-clinician relationship 

• Explore the process of decision-making, including the 

the concept of shared decision-making 

• Investigate the effect of decision aids on communicati

• Observe how health care systems currently foster or im

patient/family-clinician communication 

• Characterize situations that require dealing with unce

and how clinicians and patients discuss uncertainty 

• Explore how clinical communication affects patient ag

enablement, and self-care 

• Understand the effects of clinician well-being, self-awa

and burnout on communication 

106 
tive communication about bad 

news and treatment choices is 

associated with improved quality 

of life. 

We suggest the following topics as 

areas for future descriptive research: 

• Continuous healing relationships 

• Communication environment 

• Family involvement in clinical 

consultations 

• Use of electronic media 

• Information overload 

• Social support 

• Decision-making 

• Health care systems 

• Uncertainty 

• Agency, enablement, and
 

action
 

• Clinician well-being and
 

burnout
 

Continuous healing relationships 

Patients focus on many aspects of 

their relationships with clinicians—not just communication. 

Qualitative studies suggest that 

patients value physicians’ enduring 

characteristics (e.g., caring, connection, knowing the patient as a 

person) more than specific communication techniques (e.g., 

expressing empathy, partnership 

building).43-49 Collectively, and over 

clinicians’ understanding of the 

way patients make sense of their 

illnesses (illness representations).8,9,18-20,50 When clinicians 

understand these illness representations, patients feel recognized, 

accompanied, cared for, and 

healed.18,51 Qualitative reports can 

further elucidate the way patients 

understand their own illnesses and 

feel understood by their clinicians. 

In turn, such reports can inform 

future research on ways of improving and monitoring the quality of 

continuous healing relationships. 

Although communication research 

primarily addresses single discrete 

clinical encounters, patients experience visits with clinicians in a 

more “narrative” way. Over time, a 

story unfolds, with each contact 

framed by history, anticipation, 

and retrospect. By taking a historical and longitudinal approach, 

some of the paradoxes noted in 

communication research—such as 

the relatively low correlations 

between observer-coded measures 

and patient self-reports of communication—may be better understood. The goals set out by the 

IOM’s “Crossing the Quality 

Chasm” report include continuous 

healing relationships characterized 

by trust and feeling understood.3 

Longitudinal research enables the 

study of these relationships as they 

unfold over time. 

patients experience these dif

personnel and what value th

place on these relationships. 

Studies should examine all i

tions in cancer care and, at m

mum, assess patients’ percep

and evaluate how different p

clinician relationships relate 

proximal, intermediate, and 

(health) outcomes. 

Family involvement in clinic

consultations 

Cancer has a major impact o

ily life.36 Family members at

most cancer consultations in 

diagnostic, prognostic, and t

ment discussions occur36 and 

cally visit frequently when p

are hospitalized. Yet, only a 

depth studies have considere

essential role of family mem

remembering and interpretin

information, discussing trea

options with and without the 

ence of clinicians, providing 

support, and providing “terr

management” to buffer the e

of devastating news.36,52-54 Fa

play a crucial role in improv

clinical communication in c

settings. Clinicians’ attitude

toward family involvement 

generally are positive,53 but f

members can disrupt the pat

clinician relationship, length

its, interject their own value

lead clinicians to offer less e

tional support.55 Clinicians c

rently make poor use of fam
Internet before and between contacts with health professionals.10 

Little is known about how this 

information shapes patients’ illness 

representations, makes its way into 

clinical conversations, or influences subsequent patient behavior 

and well-being. Another type of 

electronic communication, e-mail, 

is being used more often by clinicians and patients/families, and the 

impact of such communication 

likely will change important 

processes of care. Although e-mail 

communication can increase 

patient access to clinicians, it also 

may increase clinician workload 

and lead to stress and burnout. 

More research is needed on the 

ways in which electronic resources 

and e-mail can enhance the care of 

patients with cancer. 

Information overload 

Communication research generally 

has used an information-deficit 

model, which focuses on patients’ 

expressed needs for more information about an illness and its treatment, prognosis, and psychological 

impact. Paradoxically, a new generation of Internet-savvy patients 

and families find themselves with 

seemingly unlimited access to 

information and now need help 

judging its quality and relevance. 

Information overload can also be a 

source of anxiety. Often, contradictory or ambiguous information 

requires clarification by clinicians. 

Social support 

Clinicians provide social support 

during their interactions with 

patients and also facilitate 

patients’ access to social support. 

How clinical communication can 

result in increased social support 

and how social support might 

mediate the relationship between 

improved communication and 

improved health outcomes is 

poorly studied. Likely factors 

include neurohumoral and 

immunological responses to (lack 

of) social isolation, logistical and 

financial support, emotional support, and promotion of healthy 

behaviors through social norms 

and encouragement. A large body 

of literature documents the need 

for and influence of social support, 

but very few studies have specifically addressed the role of communication. 

Decision-making 

Several studies on decision-making 

address the balance of power 

between patients and physicians in 

making decisions under uncertain 

circumstances.56-62 (See Appendix 

D for a more extensive review.) 

However, few of these studies have 

addressed how decisions actually 

are identified and made in clinical 

practice. Future research should 

describe the process by which 

decisions are addressed, how 

patients participate in discussions, 

than the protagonists,63 

reflecting differing abi

tinguish acquiescence 

ment. Further explorat

nature of clinical decis

needed to guide future 

tions. Decision aids, w

video materials design

patients to make indep

choices among treatme

present opportunities t

patients and families p

the clinical interaction 

ate when confronting d

sions.64 However, the r

decision aids in facilita

munication is not well 

Health care systems 

The role of health care 

fostering communicati

explored minimally, al

role seems pivotal. In o

another, health care sys

access, the flow of info

use of time, financial i

and the structure of he

teams, all of which hav

on communication and 

care. Descriptive resea

cal communication in h

systems that have adop

tural changes to impro

care would inform futu

nication efforts. These 

might include impleme

approaches to care, sel

ment programs, Intern

patients, and patient ac

tronic medical records

108 
suggests that neurohumoral 

responses are activated not only in 

response to but also in anticipation 

of imagined unpleasant events.68 

These responses lead people to 

make hasty choices to avoid the 

imagined pain and anxiety of prolonged uncertainty. Further 

research can explore how communication raises awareness of, frames, 

reduces, and/or fosters acceptance 

of uncertainty across the different 

phases of the cancer care continuum. 

Agency, enablement, and action 

There is very little research on how 

patient-clinician communication is 

translated into patient action. 

Descriptive research can elucidate 

how patients are motivated to selfmanage aspects of the illness, 

acquire information, garner social 

support resources, and navigate the 

health care system with and without help from health professionals 

and family members. 

Clinician well-being and burnout 

Clinician well-being has a direct 

impact on the quality of care 

patients receive.38,39 Caring for 

people with cancer is emotionally 

taxing, burnout is not infrequent, 

and personal wellness strategies 

seem to have a positive effect on 

reported quality of care for 

patients.38,40,69-73 However, clinicians’ emotional needs and their 

feelings toward their patients are 

often not addressed.74,75 Further 

descriptive research can explore 

6.2.4 Intervention research 

(Table 6.8) 

Intervention research in cancer 

communication largely has focused 

on providing information, enhancing patient recall of information, 

improving the delivery of bad 

news, eliciting and responding to 

emotional needs of patients, 

advancing patients’ informationseeking skills, and increasing 

patient control of the decisionmaking process. An overview of 

intervention research is provided in 

Appendix E. 

A fresh look at improving communication in clinical cancer settings 

may be needed to meet the goals of 

improving patient survival and 

quality of life. As described in 

Section 6.3.1, the development of a 

communication improvement 

model, not just a descriptive model 

of communication, is needed to 

further intervention research. 

Although descriptive models are 

useful for research purposes, 

health care system planners and 

change agents need a model to 

guide interventions; this model 

should focus explicitly on elements 

that are likely to make a difference. 

The research framework should 

take into account the desirable outcomes and identify theoretical and 

empirical links between communication and desired outcomes. 

Planning of interventions should 

• Who should be the targe

the intervention? 

• What skills, attitudes, an

tent areas should be 

addressed? 

• When is the intervention 

likely to have an impact

• Where should the interv

take place? 

• How should the interven

be conducted? 

The areas for descriptive res

listed in the previous section 

also areas for potential inter

tions, but they will not be di

cussed again here. Four add

considerations should guide 

interventions: 

• Combining intervention

involving health care sy

clinicians, and patients 

• Focusing on improving 

access and agency, not j

attitudes and knowledge 

• Incorporating family an

social systems to optimi

patient care 

• Using all possible comm

tion media to foster con

healing relationships 
include health care systems 

changes in addition to targeting clinicians, patients, and ancillary personnel. Research should also focus 

on families and social systems, not 

just individual patients. 

Most cancer communication studies to date have focused primarily 

on changing clinicians’ (especially 

physicians’) communication 

behavior.76-78 Fewer studies have 

involved patients, and studies 

involving health care systems are 

rare. To provide a rationale for 

combined interventions involving 

patients, clinicians, and the health 

care system, we first present a brief 

overview and explain the limitations of interventions involving 

only clinicians, patients, or ancillary personnel. 

Clinicians 

Interventions generally consist of 

seminars for clinicians that are of 

three hours to three days in duration. Areas of focus include skills 

for eliciting patient concerns, 

expressing empathy, responding to 

patient cues, handling psychological distress, dealing with emotions, 

breaking bad news, helping 

patients manage pain, and working 

with patients who have limited literacy. The most effective training 

programs are long-term, involve 

multiple pedagogical methods, 

allow for rehearsal, provide timely 

feedback, and allow clinicians to 

work in groups with skilled facili

that the patients of physicians who 

have undergone such training consequently felt better informed, less 

depressed, and more in control.82,83 

However, many of these studies are 

characterized by a small sample 

size. Use of different measures of 

communication and health outcomes makes comparison across 

studies difficult. Furthermore, 

without incentives to participate, 

only interested and motivated clinicians attend communication skills 

courses, leaving the majority—and 

often those who need it the most— 

without training. Because experienced clinicians have usually 

developed rather stable routines for 

interacting with patients, communication training interventions need 

to be introduced early in the medical school curriculum. 

Changing the behavior of practicing clinicians presents an important challenge for two reasons. 

First, patient-centered communication represents not only a new set 

of behaviors and skills but also a 

fundamental difference in outlook 

on the patient-clinician relationship, in which the clinician’s task 

is to explore emotional aspects of 

suffering, not just physical aspects, 

and to empower—not just inform. 

Second, it is likely that many clinicians believe that they are “patient 

centered” because they are caring, 

thorough, and involved. However, 

a closer look at their communication patterns reveals otherwise. 

ble, and affordable. Al

understanding of the fu

skills that clinicians ne

to focus interventions o

skills and attitudes that 

affect patient outcome

ple, there is sufficient c

dence to suggest that c

interventions should en

clinicians at least learn 

modate patients who w

ticipate in their own ca

However, the effective

interventions will be d

patients are not prepar

pate in their visits or if 

facilities do little to en

sustain these training p

The cost of providing c

tion training to clinicia

considered in the conte

suffering and expense 

poor communication a

of the use of unnecessa

propriate cancer treatm

technologies. 

Patients 

Such interventions as i

coaching, interactive c

programs, videos of ro

and question prompt sh

vide patients with tool

about the disease, ask 

and participate in decis

making.86-88 The interve

improve information-g

decrease anxiety, impr

and stimulate discussio

Decision aids are used 

110 
They also raise patient satisfaction94 and may increase patients’ 

participation at later consultations.95 Patient interventions paradoxically may decrease patient 

satisfaction and not affect clinicians’ communication patterns if 

the clinicians are not “in tune” 

with the goals of the intervention, 

suggesting that combined interventions may have positive effects on 

communication that clinician and 

patient interventions alone cannot 

demonstrate. 

Ancillary personnel 

Numerous interventions for 

depression, diabetes, asthma, and 

other chronic illnesses have 

involved the use of care managers 

and/or navigators to educate, motivate, and activate patients to 

improve their own self-care and to 

help patients move through the 

health care system. While some 

research has examined the role of 

lay health educators to help 

patients with cancer manage pain,96 

to date, none has specifically 

examined how ancillary health 

workers affect communication 

between clinicians and patients 

with cancer.97 Clearly, if these 

interventions are to have a future, 

their incorporation into routine 

clinical care is essential. It is not 

clear if care management interventions will work in the long-term as 

stand-alone interventions in the 

absence of interventions at the cli

patient navigation should be 

explored further. Perhaps care 

managers and navigators may 

become unnecessary if appropriate 

changes to health care systems 

are made. 

Health care systems 

System-wide interventions have 

the potential to incorporate and 

build on interventions for clinicians and patients by coordinating 

approaches, a variety of health professionals and staff, and financial 

incentives. The chronic care model 

provides one way of understanding 

how health care systems can optimize care, including communication.98,99 The model includes 

self-management support, decision 

support, clinical information systems, delivery system design, and 

community resources and policies, 

all of which are aligned to optimize care. Coupled with clinician 

and/or patient training, improved 

communication with patients is a 

likely but unproved outcome of 

such systems. System-wide interventions benefit from attention to 

the following: 

• Providing leadership to clarify 

roles and set expectations for 

good communication 

• Setting incentives in the form 

of compensation, recognition, 

and job satisfaction 

settings, to foster better 

munication 

• Making sure time during 

clinical encounter is use

focus on substantive issu

rather than administrativ

• Developing systems for

monitoring the quality o

communication 


Potential interventions at the 

tice level include the followi

• Restructuring appointm

systems to improve acce

health care 

• Providing telephone inf

tion lines 

• Implementing health inf

tion systems that provid

patients with easy acces

health and disease-relate

information (e.g., patien

friendly websites); 

• Implementing shared el

tronic health records 

• Providing cultural comp

training for all clinical s

• Providing interpreters 

• Giving patients choices 

physicians and health ca

team members 

• Training patients to requ

appropriate treatment 

• Using family meetings
 

routinely
 
training. For example, the use of 

question prompt sheets in the waiting room or health-related websites 

that can be accessed from patients’ 

homes in anticipation of a clinic or 

hospital visit can jump-start important clinical conversations. Health 

care systems also can supplement 

face-to-face communication by 

adopting electronic communication 

systems that support patient-clinician interactions. Allowing patients 

to write in their personal medical 

charts also bolsters communication. 

Parallel interventions for clinicians 

and patients may improve the likelihood that clinicians will enthusiastically support patient efforts at 

self-management. Interventions at 

the health care system level can 

improve communication among 

multiple clinicians by providing a 

common information system, 

structural features that facilitate 

communication, care teams, and 

shared medical records. These 

measures are not a remedy for lack 

of clinician and patient communication skills, however. Combined 

interventions may be synergistic 

and should target more than just 

one of the elements (clinicians, 

patients, or health care systems). 

No single element necessarily may 

be effective alone, just as singleagent chemotherapy often has minimal or short-lived responses. 

In order to design and execute 

communication interventions at the 

nology. Changes that are designed 

to improve patient-centered care 

also should measure the effect of 

these interventions on the quality 

and ease of communication. 

Families and social systems 

We noted in the section on descriptive research that family members 

are frequently present during inpatient and outpatient consultations. 

How family involvement and family dynamics affect communication 

and health outcomes is not known. 

Intervention research can help 

family members assist the patient 

in gaining access to care, encourage healthy behaviors, and remember important details that might be 

forgotten by a patient in distress. 

Yet, in a recent review,36 no clinical 

trials to improve family-clinician 

communication were identified. 

The nature of family interventions 

could include the following: providing information to the family; 

using prompt sheets and coaching 

similar to those received by 

patients; conducting group visits 

that include patients, families, and 

clinicians (similar to such visits 

patients with diabetes);100 and 

offering family members the 

opportunity to write in the patient’s 

medical record (while also ensuring confidentiality). Family interventions may be especially 

appropriate for patients who lack 

functional or cognitive capacity, 

patients who present language bar

be explored early in th

Interventions to impro

clinician communicati

include skills for mana

dynamics and conflict.

of family interventions 

also include measures 

functioning. 

Which communication 

and outcomes should 

Communication resear

cancer care setting sho

the focus on several be

• Establishing contin

ing relationships, n

gle encounters 

• Helping patients b

consumers of know

just passive recipie

mation 

• Improving social s

within and extrinsi

patient-clinician re

• Managing uncerta

• Process of delibera

treatment decision

who decides 

• Partnership and ag

just self-efficacy o

Fostering continuous h

relationships 

We discussed the impo

narrative, history, and 

relationships in the sec

112 
communication should target the 

strengthening of these relationships. At the health care system 

level, patients should have 

improved access and continuity. 

Research should study the mediating effects of the therapeutic 

alliance on the relationship 

between communication and 

outcomes. 

Continuous healing relationships 

involve more than the patient-clinician dyad. As noted previously, 

interventions should include attention to family members and other 

members of the health care team. 

Structuring and evaluating such 

complex interventions will require 

qualitative as well as quantitative 

approaches. 

Continuous healing relationships 

should involve optimal use of all 

possible communication media. 

Very little is known, however, 

about how to incorporate even simple technology, such as e-mail, 

seamlessly into clinical practice. 

As information technology continues to change and is incorporated 

more often into practice settings, it 

becomes an opportune time for 

large-scale longitudinal research 

on the impact of information technology on healing relationships. 

Longitudinal studies of relationships will require innovative data 

collection techniques to reduce the 

burden on study participants and to 

phones. Follow-up intervals must 

account for the effects of interventions as relationships evolve over 

time. Also, interventions may have 

to occur over time. Patients’ needs, 

wishes, preferences, and emotions 

vary during the course of the cancer experience, and this could limit 

the effect of any single training 

intervention. 

Helping patients be effective consumers of knowledge 

With increased access to the 

Internet, shared medical records, 

and other resources, clinicians will 

have to help patients sort through 

information and put it into the context of their own illness. Clinicians 

and patients can be trained to 

engage in more productive sharing 

of information, but training would 

be optimized in a health care system that provides access to highquality health-related information. 

Improving social support within 

and extrinsic to the patientclinician relationship 

Social support has powerful effects 

on health, yet the potential of 

patient-clinician communication to 

broaden social support has not 

been explored in-depth. The mediating effect of social support on the 

relationship between communication and outcomes may be best 

explored in intervention studies 

that include components that 

enable patients to better use their 

social networks and form new ones. 

ventions should have both a

and cognitive elements. 

Particularly important is the 

ance of anxiety-driven prem

closure of decisions that wo

otherwise benefit from more 

cussion and deliberation. 

Realistically framing uncert

as providing both threat and 

can lower anxiety over the lo

run. In contrast, reassurance 

leads to a transient reduction 

anxiety, followed by a quick 

rebound to previous or highe

els.102 Very few studies have 

done on eliciting the patient 

that would influence the out

of decisions made under unc

tainty. Presenting clinical ev

to patients in ways that can b

ily understood and incorpora

into decisions is also crucial 

managing uncertainty.103 For 

ple, recent studies demonstr

the use of graphical displays 

enhance patient understandi

reduce reliance on anecdota

mation during discussions o

risk.104-107 Further studies mig

explore how the use of graph

influences oral communicati

whether electronic and pape

media for displaying graphic

equally effective. 

Four types of uncertainty ha

been proposed by Saunders:

• Interpersonal uncertaint

uncertainty in communi

occurs when people do 
of knowledge occurs when the 

clinician or patient is unsure, 

but there is an answer available 

that can reduce uncertainty. 

• Uncertainty in application 

occurs when the available scientific evidence is known, but 

there is still doubt about what 

to do because the populations 

studied differ from the patient 

in important ways, the findings are conflicting, or there 

are no data on outcomes of 

importance. 

• Moral uncertainty occurs when 

the goal of the clinical intervention is unclear, such as 

whether the patient wants 

aggressive treatment with a 

known probability of effectiveness even if it might involve 

greater discomfort. 

Each of these types of uncertainty 

requires a different approach to 

communication. 

Improving the process of deliberation for treatment decisions 

As noted previously, most decision 

research in cancer has focused on 

who makes the decision, presuming that there is conflict between, 

or mutual ignorance of, patients’ 

and clinicians’ values. However, 

optimal decision-making is a 

process that achieves mutual 

understanding by revealing the clinicians’ and patients’ respective 

thoughts and reconciling differ

clinicians and patients. 

Enhancing partnership and agency 

Self-management programs for 

patients with chronic disease focus 

on several features that may optimize outcomes in cancer settings. 

(See Tables 4.1 [page 68] and 4.2 

[page 70]). Although empowered 

patients have a sense of self-efficacy, they also need the means to 

identify problems, set goals, 

actively access resources, solve 

problems, and use physicians and a 

variety of other health professionals as partners in care. It remains 

unclear, however, which clinician 

communication behaviors promote 

self-care and self-management, 

and what combination of patient, 

clinician, and health care system 

interventions is necessary to transform fundamentally cliniciandirected care to partnerships. 

Further research should identify 

the phases of cancer self-management during which interventions 

are most appropriate and most 

likely to influence health outcomes. 

Which phases of the cancer care 

continuum should be targeted 

Most cancer communication studies involve patients making decisions about screening or patients 

with newly diagnosed cancer considering treatment choices. 

Additional intervention research is 

needed at these phases, but perhaps 

disease or its treatment

patients are dealing wi

rence and treatment fai

frequently must decide 

third-line treatments w

or unproved effectiven

comfort care. But clini

very little research to g

in presenting informati

ing with these difficult 

In addition, few interve

address patients’ needs 

mation and emotional 

decision-making, and m

uncertainty from diagn

survivorship. 

Longitudinal intervent

reinforcement and acco

to changing clinical re

provide patients and fa

needed continuous hea

tionships. Just as cance

involves different mod

offered sequentially—

which are intensive an

which take years—seq

gitudinal communicati

tions may yield the bes

How and when interve

should occur 

Drawing from complex

articulated in the IOM

the Quality Chasm” re

timing and context of i

may be as important as 

ventions themselves. A

previously, clinicians d

114 
• Study patient interventions in a wider range of clinical settings, 

with use of electronic media, and in combination with clinician 

interventions 

• Study the effects of care managers, navigators, and other 

personnel on the quality of care and patient outcomes 

• Focus on families and social systems, not just individuals 

• Focus on health care systems, not just clinicians, patients, care 

managers, and navigators 

• Develop system-wide interventions to incorporate and build on 

interventions for clinicians and patients 

• Consider self-management support, decision support, clinical 

information systems, delivery system design, and community resources 

• Study combined interventions rather than single elements 

Which communication behaviors and outcomes to target 

• Focus on continuous healing relationships, not just encounters 

• Focus on helping patients be effective consumers of knowledge, 

not just passive recipients of information 

• Focus on improving social support within and extrinsic to the 

patient-clinician relationship 

• Focus on managing uncertainty 

• Focus on the process of deliberation when making important 

treatment decisions, not just who decides 

• Focus on partnership and agency, not just self-efficacy or satisfaction 

Which phases of the cancer care continuum to target 

• Continue current research topics 

– Screening decisions 

– Treatment choices for patients with newly diagnosed cancer 

facing treatment choices 

– Palliative care decisions 

• Future research topics 

– Communication during the treatment phase 

– Survivorship, including the experiences of cancer survivors 

who have recurrence 

– End-of-life care 

– Longitudinal interventions across phases 

impact on overall communic

style. Patients, on the other h

generally have little experien

with physicians, and training 

be more effective when they 

confronting a serious illness 

in life. Although this concep

appears logical, communica

improvement models would 

depend on knowing when th

interventions actually have t

greatest effect. 

6.3 Methodological Issues 

Communication Research i

Cancer Settings (Table 6.9) 

6.3.1 Study design 

Most descriptive research in 

settings is cross-sectional. 

Longitudinal studies illumin

development of patient-cent

behaviors over time and faci

causal inferences linking co

nication processes with patie

health outcomes. Despite ca

longitudinal studies for mor

20 years,110 these studies are 

probably because of their ex

and complexity. Randomize

trolled trials of communicat

interventions are challengin

because of the complexity o

ventions that involve patient

nicians, and health care syst

considerable number of rand

ized trials have proximal end

that measure only communi
studies of patients experiences 

over time may require designs of 

clinicians nested within patients, 

the opposite of the traditional 

patient-nested-within-clinician 

design using a convenience sample. Also, health care system interventions ideally would use the 

system as the unit of analysis. 

Patients’ experiences are, by definition, incompletely captured using 

rating scales. Hence, a qualitative 

component of intervention studies 

can provide valuable information 

about how the intervention is 

received. There exists a considerable body of knowledge involving 

design of mixed-method studies in 

primary care that can be applied to 

cancer settings,111 including randomized controlled trials of health 

care system interventions. There 

are limitations to the use of real 

patients, including differences in 

clinician case-mix and self-selection of clinicians and patients. 

Observational studies and randomized trials can be conducted with 

use of standardized patients to 

overcome some of these challenges, and this topic is discussed 

in Section 6.4.7. 

In some cases, randomized controlled trials are impossible for ethical reasons, are impractical, or are 

prohibitively expensive. In those 

cases, it is possible to carry out 

carefully designed cohort or 

descriptive studies using qualitative and mixed-method methodology borrowed from educational 

program evaluation.112 

6.3.2 Interventions 

As noted previously, multicomponent interventions are more likely 

to be successful than a molar 

• Longitudinal design 

• Intermediate and distal outcomes 

• Nesting clinicians within patients and nesting patients 

clinicians 

• Evaluation of educational programs 

Theoretically informed choice of pathways and inter

and health outcomes 

• Improved patient knowledge and shared understandin

• Improved access to care 

• Improved therapeutic alliances 

• Improved emotional self-management 

• Stronger family/social support and advocacy 

• Improved quality of medical decisions 

• Improved patient agency 

Data sources 

• Current 

– Patient surveys 

– Interviews 

– Focus groups 

– Observations (direct or audiotaped) of practice 

• New methods 

– Patient or clinician diaries 

– Entries into shared medical records 

– E-mail text 

– Critical incident reports 

– Unannounced standardized patients 

approach of testing ind

ments. Although each 

element may have a sm

communication and ou

synergistic approaches 

levels of the health car

may be more effective

116 
(and are most sensitive to) changes 

in communication and which are 

most closely associated with health 

outcomes. These intermediate outcomes then can be used as indicators of future changes in health 

outcomes or as proxies for the 

moment-to-moment behavior that 

occurs in clinical settings, which 

can otherwise be difficult to measure. For example, consider the case 

of a man with prostate cancer who 

stops hormone therapy after treatment with radiation has ended 

because he thought his continued 

need to urinate frequently at night 

indicated that the treatment was 

ineffective (an illness representation). In this case, poor adherence, 

which also leads to poorer outcomes, is a result of communication failure because the patient is 

making false assumptions about 

the treatment. 

Another question to explore is 

which intermediate outcomes are 

most closely associated with 

improvements in quality of life and 

survival. Different intermediate 

outcomes may link various communication functions with various 

aspects of health-related quality of 

life. Also, some links may be 

immediate and others, delayed. For 

example, communication interventions that improve adherence to 

long-term hormone therapy for 

breast cancer will likely improve 

survival but may increase symptoms and thus decrease quality of 

life in the short-term. 

and shared understanding 

This pathway encompasses the 

translation of information into useful knowledge, the effect of useful 

knowledge on anxiety and wellbeing, and the attainment of a 

shared understanding when clinician and patient understand and 

align illness representations. 

• Improved access to care 

This pathway encompasses societal 

and health care system issues, navigational resources, and patient 

empowerment and enablement. 

• Improved therapeutic alliances 

As stated previously, one of the 

functions of communication is to 

foster continuous healing relationships. Once formed, the therapeutic alliance may also have a 

mediating effect on the pathways 

from communication to health outcomes. Studying this pathway 

should incorporate mixed-method 

research, given the discrepancies 

noted between what patients report 

in unstructured qualitative interviews and the content of commonly used survey instruments. 

(See Appendix A for a more extensive discussion of healing relationships.) 

• Improved emotional self-management 

Emotions have an important effect 

on well-being; however, only a few 

of the many possible mechanisms 

may be provision of timely i

mation, a continuous relation

with a health care team, and 

tance in navigating the health 

system. Also, the ability to m

uncertainty depends on and a

affects the patient’s emotion

• Stronger family/social s

and advocacy 

There is a large body of liter

linking social support to hea

However, of the four mecha

described in Chapter 3 (and 

3.3), it is not clear which of 

is most appropriate at each p

of the cancer care continuum 

with different types of patien

settings. Social networks can 

improve health outcomes by 

ting social norms for and fac

ing healthy behaviors, offeri

financial assistance, providin

sense of connectedness, low

physiological arousal, and in

ing self-efficacy. However, t

a need to understand how co

nication affects social suppo

which communication-relate

changes in social support, in 

affect health outcomes. 

• Improved quality of med

decisions 

Criteria for high-quality dec

should include evidence that 

decisions are clinically infor

concordant with the patient’

ues, and mutually endorsed. 
developed only recently, yet are 

important in understanding how 

communication might lead to 

improved adherence, health habits, 

and self-care. 

6.3.4 Defining and describing 

important moderators of the 

relationship between 

communication and health 

outcomes 

Space limits our ability to discuss 

all of the potential moderators of 

the relationship between communication and outcomes. (See Table 

3.4, page 52.) However, we consider three moderators to be particularly important and in need of 

future research: social distance, 

health literacy, and social networks. 

Social distance 

Social distance is the discordance 

between clinicians and patients 

with regard to interests, values, 

beliefs, and assumptions. This 

moderator may provide an explanation for effects related to differences in educational background, 

social class, race, ethnicity, and 

gender. The general communication literature suggests that patient 

reports of lower satisfaction with 

greater social distance may not be 

supported by direct observations of 

communication behavior.114 This 

raises two questions: Are we looking at the right elements of communication? Is social distance the 

moderator of the observed effects, 

combination of several demographic characteristics that may not 

occur independently; that is, differences between two ethnic groups 

may also include differences in 

skin color, language or dialect, economics, and educational background. Also, social distance is 

associated with other moderators 

that have a more direct theoretical 

relationship to communication, 

such as increased anxiety in the 

presence of someone who seems 

different, lack of a common illness 

representation, and misunderstandings due to different word usage.115 

Supporting that view is the observation that disparities in communication related to social distance 

may be the result of a patient’s 

prior impressions based on stereotyping, which change only gradually as he or she gets to know a 

clinician better.116 As another example, although age has been associated with a more passive 

decision-making style and fewer 

requests for information,16 agerelated differences may be far less 

or even disappear when highly educated, literate, nondepressed, cognitively intact seniors who use the 

Internet are compared with similar 

younger counterparts. By framing 

the moderators as behavioral variables, they may be perceived as 

amenable to change, in contrast to 

demographic characteristics, which 

are not. Thus, it is not unreasonable 

to propose that bias related to the 

tionship between comm

and outcomes. 

Health literacy 

The effectiveness of in

to improve patients’ co

tion skills, agency, and 

may be moderated by h

acy.117 Similarly, a bala

tation of treatment opt

also increase patient pa

in decision-making mo

ate patients who have s

background knowledge 

stand the health issues 

Social networks 

Social networks may m

well as mediate the rel

between communicatio

comes.113 For example, 

to which a patient follo

with a treatment plan m

erated by the degree of 

port for the plan. Altho

identification of moder

ables is important, it is 

important to understan

variables have a moder

6.3.5 Study population

Most patients enrolled 

communication studies 

narrow spectrum of pa

families affected by ca

and family members o

with cancer are studied 

quently than women. M

linguistic, ethnic, and r

minorities, and patient

118 
patients with cancers associated 

with poor prognosis. These studies 

should address the survivorship 

phase, time of relapse, process of 

considering experimental therapies, and palliative care. 

6.3.6 Data sources 

Currently, patient surveys and 

audio recordings of clinical consultations constitute the majority of 

communication data in quantitative 

studies, and interviews, focus 

groups, and audio recordings or 

direct observations of practice 

dominate qualitative studies. 

However, the use of other sources, 

such as patient or clinician diaries, 

entries into shared medical 

records, e-mail text, standardized 

patient encounters, and critical 

incident reports, is now more feasible, given advances in information 

technology. Diaries allow for 

moment-to-moment assessments of 

“life as it is lived”118 by sampling 

patients’ emotional states, physical 

symptoms, or critical experiences 

shortly after they happen. 

Longitudinal data obtained from 

studies involving diaries often 

reveal patterns not seen in retrospective reports. Unannounced 

standardized patients—actors who 

present covertly in clinical practices with clinicians’ prior consent—have been used in health 

services research to document 

important differences in prescrib

mix, patient and clinician selfselection and accommodation, and 

other sources of unexplained 

patient variance. Standardized 

patients can be deployed in a variety of settings and are detected less 

than 15% of the time. Other data 

sources, such as shared medical 

records, are still relatively undeveloped. The utility of these different 

data collection methods and 

sources needs to be examined in 

future research on communication 

in cancer settings. 

6.3.7 Measurement tools 

General principles 

Measures should be based on theory and theoretical relationships 

among communication functions, 

pathways, and outcomes. 

Obviously, richer qualitative 

description of some elements will 

always be necessary. 

Measurement of communication: 

directly observed and patientreported 

Communication measures can be 

general, applying to all communication situations in health care, or 

specific to particular contexts, such 

as delivery of bad news or decision-making. They also can be 

process-oriented, categorizing the 

type of linguistic event (e.g., asking questions, social talk), or content-oriented (e.g., providing 

prognostic information). We have 

distinct behaviors and/or use 

ferent nomenclature for sim

behaviors.4 Measures based 

audio or video recorded cod

schemes of the actual intera

often do not correlate strong

measures that are based on p

perceptions of the same enc

noted in surveys.77 In order t

cessfully monitor and impro

delivery and impact of comm

cation in clinical practice, m

ures of the key functions mu

capture, over time, in a relia

valid manner, the interaction

patients and their families w

multiple members of the hea

care delivery team. 

Following are some conside

drawn from a recent set of p

lished recommendations:4 

• Communication measur

should be theory based 

empirically validated. 

Particular attention shou

focused on correlations 

between the specific me

and future intermediate 

distal (health) outcomes

aspects of communicati

being measured should 

ified; “patient-centered 

munication” currently h

many connotations that 

ures of it are likely to re

very different aspects of 

tifaceted construct. 

Components of a measu

should be described, and 
retically plausible link as well 

as measures of proposed mediators along the pathway. 

• Communication measures 

should reflect what is important to patients and families. 

Researchers have noted differences between the way 

patients describe their experience of care in qualitative 

studies and the findings of surveys or observational coding 

of clinical encounters. Thus, 

there is an important role for 

focus groups, cognitive interviews, and ethnography in the 

development of measures. 

• Measures should account for 

all relevant participants in the 

interaction. When family 

members are present or there 

is more than one clinician 

involved in the patient’s care, 

their contributions to the conversation should be recorded 

and analyzed. Also, patient’s 

perceptions of communication 

should include observations of 

their interactions with other 

relevant health professionals. 

Surprisingly, even though family members are present in 

most interactions in which 

diagnosis and treatment 

options are discussed, their 

contributions rarely are 

acknowledged and thus, 

important data and interactions 

are missed. 

the purpose studied. Attempts 

to create single measures 

encompassing all relevant elements of communication have 

not been sufficient and have 

often yielded paradoxical 

results that cannot be explored 

in greater depth. However, 

general measures can allow for 

comparison across settings. A 

similar set of principles also 

applies to the measurement of 

outcomes, mediators, and 

moderators. 

• Outcomes measures should be 

standardized. There are numerous measures of health-related 

quality of life, both general 

and disease-specific or situation-specific.126-133 Different 

measures will likely be sensitive to various communication 

interventions for different diseases at distinct phases on the 

cancer care continuum. 

However, this creates difficulties extrapolating results from 

one study to another in different contexts. The Functional 

Assessment of Cancer Therapy 

(FACT) scales offers a partial 

solution by providing a “family” of scales, each of which 

incorporates common general 

outcomes measures as well as 

disease-specific or situationspecific outcomes.132-135 

• Measures of relevant mediators and moderators should be 

tems are needed to 

effects of intervent

system level. Altho

ments to capture p

jective experience 

available,136 they d

tify structural elem

as availability of m

nary teams and sha

records. 

6.4 A Timeline for Fu

Research 

A solid framework of 

based descriptive resea

domized trials indicate

communication is a ce

of high-quality care fo

and families affected b

The field is ripe for int

to improve the surviva

of life of people affect

cer, including patients

lies, and clinicians. Ho

several elements need 

developed to improve 

hood of success of larg

interventions and furth

tive research. These el

include the following: 

Defining pathways from 

cation to health. Resea

should be informed by 

standing of which fact

and moderate the relati

communication to sub

health care and health 

Some of these factors c

120 
behaviors such as use of empathy. 

These likely would be single-institution endeavors initially. 

Understanding these pathways will 

then inform what types of measures should be developed to 

describe relevant communication 

behaviors, intermediate outcomes, 

and health outcomes. 

Creating better infrastructures for 

data management. Longitudinal 

studies involve ongoing interventions, continuous data collection, 

and long-term surveillance of outcomes and communication behaviors. Data from current and past 

communication research tends to 

remain where it was collected and 

does not include standardized 

measures, limiting the usefulness 

of the data to other researchers. In 

the future, data should be sufficiently standardized and easily 

accessible so that multiple outcomes can be studied over time. 

Surveillance can be applied to 

communication (e.g., What percentage of patients with cancer are 

being told accurate prognoses? To 

what extent do clinicians assess 

patients’ understanding of these 

estimates?) in the same way it is 

applied to other clinical variables. 

Creating research networks and 

consortia. Interventions at the 

health care system level likely will 

require large numbers of participants. Thus, consortia of clinicians, 

clinical practices, and health care 

and technicians, can facilitate clinician and patient interventions across 

institutions. Because only the 

largest health care systems in the 

United States would have sufficient 

patients, resources, and clinicians to 

conduct large longitudinal trials, 

consortia of health care systems 

will be necessary to study systems 

interventions in most settings. 

Creating programs of research. 

Communication research should 

graduate from the cottage industry 

of individual studies to linked programs of research. Currently, funding for communication research 

that involves studying interactions 

between clinicians and patients is 

supported by grant mechanisms, 

which, by nature, have a three-tofive-year horizon. Cancer, however, 

can be a disease that affects people 

for many years or decades, taking 

into account long-term sequelae of 

the disease, its treatment, and the 

uncertainty of a cure. Programs 

could be positioned to create longitudinal data warehouses accessible 

to investigators nationwide and to 

tackle some of the difficult issues 

in the long-term care of patients 

and families affected by cancer. 

6.5 Conclusion 

Cancer will affect 40% of individuals in the United States at some 

point in their lifetime if current 

trends continue, and 64% of them 

will survive five years or more 

cancer requires effective com

cation between clinicians an

patients and family member

context of a health care syst

supports these efforts. Comm

cation is ubiquitous during a

phases of the cancer care co

uum, from prevention throug

survival and end-of-life care

Currently, patient-clinician c

munication occurs most com

in face-to-face outpatient an

tient settings. However, this 

changing, and electronic com

cation will play a greater rol

the future. When effective, c

munication creates shared k

edge and understanding, red

clinical errors, leads to medi

sound decisions concordant 

patients’ values, facilitates p

pation in care and follow-thr

and helps patients cope and 

meaning. Communication is 

sine qua non of cancer care. 

This monograph has provide

preliminary roadmap for und

standing how communicatio

improve health and health ca

all Americans facing cancer

field of cancer communicati

research has provided impor

insights into how effective 

communication can meet pa

information needs, assist wi

decision-making, and provid

emotional support. Historica

research has been hindered b

several factors: 
• Lack of common measures: we 

have suggested principles for 

developing measures of communication. 

• Lack of agreement on relevant 

outcomes: we have provided a 

framework of proximal, intermediate, and distal (health) 

outcomes that can guide future 

research, 

• Focus on only a few patient 

populations, types of cancer, 

and phases of the cancer care 

continuum: we have suggested 

expanding research to include 

all types of cancer and phases 

of the continuum. 

• Interventions that concentrate 

on either patients or clinicians 

and not both: we have suggested mixed and synergistic 

interventions involving clinicians, patients, and families. 

• Lack of considering factors 

related to health care systems 

that may improve communication: we have suggested some 

organizing principles for 

involving health care systems 

factors in communication 

research. 

Researchers also should turn their 

attention to communication challenges faced by minority and disadvantaged populations, patients in 

the survivorship or end-of-life 

phase of the cancer care contin

health-related information, improving social support, managing 

uncertainty, activating patients to 

take a greater role in clinical consultations and their own self-management, and preventing caregiver 

and clinician burnout. Interventions 

must also target or take into 

account health care systems factors 

that can support or undermine 

efforts to improve clinicians’ and 

patients’ communication skills. 

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128
 
Appendix A. Communication and Healing Relationships in Cancer Settings 

A.1 	 Understanding the Patient-Clinician Relationship 


A.2 Patient Participation in Care 


A.3	 Clinician Self-Awareness and Well-Being
 

A.4 Implications for Future Study
 

Appendix B. Information Exchange in Cancer Care 

B.1	 Patients’ Information Needs 


B.2	 Patients’ Information Sources 


B.3	 Information Exchange 


B.4	 Patient Recall and Understanding 


B.5 	 Implications for Future Study
 

B.6	 Communicating Bad News
 

B.7 	Communicating Prognosis
 

Appendix C. Recognizing and Responding to Emotional Distress in Cancer Consultations 

C.1	 Benefits of Patients’ Emotional Expression 


C.2	 Clinicians’ Responsiveness to Patients’ Emotional States
 

C.3 	 Emotional Well-Being as an Outcome of Patient-Clinician Communication
 

C.4 	 Implications for Future Study
 

Appendix D. Decision-Making in Cancer Care 

D.1 	 Decision-Making in the Screening Phase
 

D.2 	 Decision-Making in the Treatment Phase 


D.3 	 Decision-Making in the End-of-Life Phase 


Appendix E. Interventions to Improve Communication between Patients with Cancer and Clinicians 

E.1	 Communication Skills Training for Clinicians
 

E.2	 Cultural Competency Training for Clinicians
 

E.3 	 Communication Skills Training for Patients
 

E.4	 Interventions at the Team, Practice, and Health Care Systems Levels to Improve
 

Communication between Patients with Cancer and Clinicians
 

E.5 	 Implications for Future Study
 

Appendix F. Survey Instruments Used to Measure Patient and Clinician 

Communication Behavior in Cancer Settings 

Appendix G. Observation-based Instruments for Coding and Rating 

Patient-Clinician Communication 
130
 
T

he literature on how patientclinician relationships affect 

patient-clinician communication (and vice versa) is sparse, and 

even less is known about the 

patient/family-clinician interactions in cancer care. What follows 

is a review of selected relevant 

articles from the cancer literature 

as well as the general communication literature. 

A.1 Understanding the PatientClinician Relationship 

Most quantitative studies of communication focus on the accomplishment of specific communication tasks (e.g., delivering bad 

news, sharing information, or making decisions), but qualitative studies of patients and families dealing 

with cancer have tended to characterize the ways that these behaviors occur within relationships 

with clinicians. Clinicians are 

more than sources of information 

and expertise; they provide emotional support, guidance, and 

understanding.1-3 The findings of 

several studies have suggested that 

patients with cancer value clinicians’ enduring characteristics 

more than specific communication 

techniques.4-6 For example, Butow 

et al.7 reported that the most 

important factors in communication of prognosis to patients with 

metastatic cancer was that the 

communication be within a caring, 

trusting, long-term relationship 

and that there be open and repeated negotiations for patient preferences. Salander and Henriksson8 

found that patients reported that 

being “connected to health care” 

and “acknowledged as a person” 

by their clinicians’ as the most 

important features of their care, 

more so than the provision of 

information. Patients’ perceptions 

of their clinicians’ overall interpersonal style can be quite nuanced. 

Some patients, for example, distinguished among “inexperienced 

messengers,” “emotionally burdened,” “rough-and-ready experts,” 

“benevolent but tactless experts,” 

“distanced doctors,” and “empathic 

professionals” when discussing 

transitions to palliative care.9 

These perceptions may partially 

account for patients’ tendency to 

rate clinicians according to an 

underlying global sense of the clinician rather than according to 

specific behaviors, even when 

those behaviors are explicitly listed as items on a survey.10 

Therapeutic relationships with clinicians can help patients adjust 

better to their illnesses.3,5,11,12 

However, the mechanisms by 

which an enduring, strong relationship is formed and how a trusting 

relationship facilitates communication and helps patients adjust to 

their illnesses, is poorly understood. Some clues to the interactions between communication and 
communicated more through nonverbal channels than through verbal ones Physicians’ tone of voice 

may affect patients’ confidence in 

them and has even been correlated 

with the likelihood that a physician was sued.14 Effective communication presumably is a key to 

strengthening relationships and 

providing patients with a greater 

sense of support.1 Conversely, a 

global sense of trust, warmth, and 

caring also may allow for forgiveness for, and repair of miscommunications and medical errors. 

A.2 Patient Participation in Care 

Regardless of their preferred roles 

in making medical decisions, 

patients generally want to be 

involved in the process of care, be 

informed of all their treatment 

options, feel as if they were listened to, and feel as if their physicians know them as people not 

simply diseases.15-17 In order to be 

involved and feel understood, 

patients must be able to effectively 

and actively communicate their 

needs, concerns, and perspectives. 

From a communication perspective, active patient participation 

may be defined as the extent to 

which patients produce verbal 

responses that have the potential to 

significantly influence the content 

and structure of the interaction, as 

well as the clinicians’ beliefs and 

one’s health story (i.e., discussing 

health within the context of daily 

living). In general, compared with 

less assertive (passive) patients, 

patients who use these behaviors 

more often20-24 

• Have increased satisfaction 

with care 

• Receive more information and 

support from clinicians 

• Are more committed to treatment plans 

• Have a better understanding of 

treatment options 

• Experience greater improvement in health 

Although clinicians sometimes 

complain about overly talkative 

and controlling patients, many clinicians believe patients’ communicative openness is desirable.25 

Clinicians report that active communication reveals valuable information about patients’ health 

needs and beliefs26,27 and contributes to treatment recommendations better suited to an individual 

patient’s life circumstances.28 

In order to be more active communicators, patients need to have sufficient cognitive and linguistic 

resources and skills, believe in the 

legitimacy of their participation, 

and interact with clinicians who 

support their involvement.18 In 

studies that have included use of 

reassurance, encourag

Other communication 

clinicians that encoura

patient involvement in

it agenda-setting, activ

checking of understan

nonverbal behaviors co

empathy and warmth.3

they wish to be activel

patients with low heal

may lack sufficient kn

adequately understand 

information34 and lack 

tic repertoire to produc

ed, fluent conversation

tions.35 This fact may e

the findings of one stu

that educated patients 

cancer were more acti

nicative in their cancer 

tions than were less ed

patients.30 Patients’ com

self-efficacy is also rel

perceptions of greater 

in cancer care consulta

Some patients, especia

patients36 and patients 

Mediterranean and As

tures,37 are more likely 

passive roles and pater

tionships with clinicia

there is substantial var

among members of the

and it is not clear how 

preferences actually ar

The quality of the pati

relationship and the de

patient participation in 

sultations are inter-rela

132 
black patients often have less trust 

in physicians and the health care 

system, which in turn, may be one 

reason black patients may be more 

cautious and less engaged in their 

interactions with clinicians compared with white patients.39 On the 

other hand, trust may create less of 

a need for information.4 

A.3 Clinician Self-Awareness and 

Well-Being 

Communication requires clinicians’ ongoing capacity for selfmonitoring.40,41 Identification of 

patients’ concerns,42 recognition of 

changes in clinical status, exploration of patients’ emotions43 and 

early recognition of errors44,45 in 

care all likely depend on clinicians’ ability to be attentive, curious, and perceptive. 

Clinicians’ ability to be attentive 

and perceptive is related to their 

own well-being. Clinicians who 

report burnout or job dissatisfaction also report lower quality of 

clinical care and demonstrate 

decreased capacity for empathy.46-55 

Correspondingly, clinicians’ ability 

to self-monitor, their availability of 

means to improve personal wellbeing and job satisfaction, and 

their ability to derive greater satisfaction from the patient-clinician 

relationship have all been noted as 

possible avenues for improving the 

quality of care, including commu

• Sharing of feelings and
 

responsibilities 


• Self-care 

• Development of a personal 

philosophy 

• Balancing of work and home 

life 

However, few of these approaches 

have been studied formally. 

Some studies have shown benefit 

of education and training in selfawareness, communication skills, 

and ways to promote well-being. 

Multiday workshops for oncologists that included self-awareness 

sessions and communication training had a positive impact on 

burnout and self-rated communication skills.57,58 A descriptive study 

of workshops for residents suggested that previously unrecognized negative attitudes interfered 

with learning communication 

skills, and consciously addressing 

those attitudes facilitated future 

learning of communication skills.59 

A before-and-after study of an 

eight-week workshop on stress 

reduction through the use of meditation techniques showed increase 

in the capacity for empathy in a 

group of nursing trainees.52 In 

qualitative studies, mindfulness 

and self-monitoring were linked to 

better conflict-resolution skills60 

and more compassionate hospice 

care.61 Personal wellness strategies 

patient-perceived physician 

fulness is highly correlated 

satisfaction, patient trust in 

physicians, and physicians’ 

for patients’ autonomy.62 It i

that research in this area is 

preliminary and in need of f

attention. 

A.4 Implications for Future 

Qualitative data have pointe

way to future quantitative a

demiological studies of the 

patient-clinician relationship

Effective communication an

tionships are generally mutu

reinforcing. Nevertheless, a 

relationship does not ensure 

difficult and emotionally ch

issues are managed effectiv

The effects of conversation 

control of chronic diseases 

have not been studied in can

settings. In some cases, the 

ceived qualities of that relat

may be more important to o

comes than the specific com

cation techniques used. Con

communication may serve t

strengthen the patient-clinic

relationship, which, in turn, 

have a direct effect on quali

life, adherence to treatment

control of disease. These m

ing and recursive influences 

patient-clinician relationship

communication warrant furt

study. 
464. 

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Katsumata N. Relationship between outpatients’ perceptions of physicians’ communication styles and patients’ anxiety levels 

in a Japanese oncology setting. Soc Sci 

Med. 2001;53:1335-1350. 

(3) McWilliam CL, Brown JB, Stewart 

M. Breast cancer patients’ experiences of 

patient-doctor communication: a working 

relationship. Patient Educ Couns. 

2000;39:191-204. 

(4) Wright EB, Holcombe C, Salmon 

P. Doctors’ communication of trust, care, 

and respect in breast cancer: qualitative 

study. BMJ. 2004;328:864. 

(5) Bakker DA, Fitch MI, Gray R, 

Reed E, Bennett J. Patient-health care 

provider communication during 

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Instrumental and affective aspects of 

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Svarstad B. Asking question

ication: analysis of physicia

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al. Spontaneous talking tim

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Manning T, Swanson GP. Increasing 

patient involvement in choosing treatment 

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MM, Krupat E, Kravitz RL. Patient participation in medical consultations: why some 

patients are more involved than others. 

Med Care. 2005;43:960-969. 

(32) Williams GC, Deci EL. Activating 

patients for smoking cessation through 

physician autonomy support. Med Care. 

2001;39:813-823. 

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et al. Responding to the active and passive 

patient: flexibility is the key. Health 

Expect. 2002;5:236-245. 

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Health literacy and shared decision making 

for prostate cancer patients with low 

socioeconomic status. Cancer Invest. 

2001;19:684-691. 

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Parker RM, Glass J. Health literacy and 

cancer communication. CA Cancer J Clin. 

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Information needs and decision-making 

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Kelly PA, Souchek J. Racial differences in 

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RH. Toward creating physician-healers: 

fostering medical students’ self-awareness, 

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K, Beckman HB. Soliciting the patient’s 

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136
 
I

nformation exchange accounts 

for a large percentage of the 

time in clinical consultations. 

The first part of this appendix is a 

review of selected recent literature regarding the way information is managed in general, centering on four themes: patients’ 

information needs, patients’ 

sources of information, information exchange, and patient recall 

and understanding. The second 

part of the appendix addresses 

two specific areas in which there 

has been more intense research: 

communicating bad news and discussing prognosis. 

B.1 Patients’ Information Needs 

Patients with cancer seek information about the cause, diagnosis, 

treatment, prognosis, and psychosocial aspects of their illness, 

but these needs vary among 

patients and change over time.1,2 

Although most research has 

focused on delivery of information at or shortly after initial diagnosis, patients’ information and 

education needs persist throughout the cancer care continuum.3 

Attending to patients’ information 

needs is important not only in 

conveying the facts of the illness 

to the patient but also in developing a strong patient-clinician relationship and improving patients’ 

psychosocial well-being and coping abilities.4,5 Information given 

to patients with cancer should be 

tailored to the type and stage of 

cancer that they have and should 

also consider personal characteristics such as age, sex, and cultural identification.6 The availability 

of information has increased over 

the past decades, but many 

patients and family members 

remain dissatisfied with the information they are given and when 

they are given it.7 

Researchers have measured the 

information needs of patients with 

cancer through the use of selfreport surveys, individual interviews, and descriptive narratives 

in qualitative studies. Specific 

instruments have been developed 

to identify the general and diagnosis-specific information needs of 

patients with cancer. Some, but 

not all, of the instruments have 

been validated. The information 

needs of patients with breast and 

prostate cancer have been well 

described, whereas the information needs of patients with head 

and neck, lung, colorectal, gynecological, and testicular cancers 

have been less well described. In 

particular, the information needs 

of patients with breast cancer have 

been high.8,9 

Younger patients and those with 

breast, prostate, gynecological, or 

testicular cancer reported needing 

more information regarding sexuality, sexual functioning, fertility, 

*This appendix was also coaut

by Taj Hadee, MD, Departmen

Fellow, Instructor of Family Me

and Instructor of Pediatrics, 

Departments of Family Medici

Pediatrics, University of Roche

School of Medicine and Dentis
given to them by clinicians.16 

About two-thirds of patients with 

prostate cancer surveyed desired 

more information pertaining to 

the effects of brachytherapy on 

sexual function and on treatment 

options for erectile dysfunction.17 

Younger patients with prostate 

cancer have had greater general 

information needs than their older 

counterparts.18 In general, sexuality was often addressed later in the 

course of the illness than patients 

would have preferred. 

During the treatment phase, 

patients have valued detailed information about their treatment plan, 

potential side effects, and the 

potential impact of these on their 

quality of life.19-22 Patients with 

cancer frequently arrive at the consultation with expectations of side 

effects from treatment,23,24 and such 

expectations actually increase the 

likelihood of experiencing those side 

effects.24 Accurate information may 

help to decrease patients’ negative 

experiences and increase their 

participation in consultations.23,25 

Information on pain management 

also is often lacking from discussions with patients,26,27 as is information regarding possible emotional reactions, alternative treatments, and the long-term effects of 

cancer treatment.16 

Patients with cancer have used 

information not only to address 

their physical needs but to their 

better able to cope with their illnesses.29-33 

In general, the benefits of providing patients with information 

include increased satisfaction 

with and participation in the consultation, decreased anxiety, and 

increased ability to cope.34 

Patients with cancer often use 

their information resources not 

only to understand their disease 

but to find hope as well.35,36 When 

surveyed, more than 80% of 

patients with cancer said they 

wanted as much information as 

possible regarding their cancer 

diagnosis and treatment 

options.16,37 The more information 

patients received, the more satisfied they were.38,39 However, some 

patients with cancer avoid information as a coping mechanism.40 

Although information-seekers 

should be given larger amounts of 

information, doing the same may 

overwhelm information-avoiding 

patients.41 Interestingly, the 

greater the information needs of 

patients with cancer, the more 

anxiety, depression, and psychosocial concerns that they tended to have.42 Patients who were 

more dissatisfied with the information they received tended to 

have more information-avoiding 

behaviors.43 

Information needs change over 

time.44 At the time of diagnosis, 

patients may want full disclosure 

nosis, treatment optio

effects, and changes t

living. After patients h

treatment, the amount 

tion they need may be 

topics—psychosocial 

bilitation, recovery, an

rence—are no less im

them. 

Barriers to information

have been the source o

tration for patients with 

Patients with breast can

experienced barriers to 

information had decrea

functional, emotional, 

family well-being.46 Pa

encountered problems 

unable to access the in

they had communicatio

with their clinicians, if 

enced information over

had difficulties with in

retention, or if the info

were given was inaccu

Patients’ recall of infor

variable. Patients espec

not recall discussing ps

issues, sexuality, or sex

tion.16 Patients’ ability 

and retain information 

depending on the form

information and how e

them to extract it.47 Wr

als and audio recording

tations tend to improve 

are discussed in detail 

138 
received from their clinician and 

preferred information from this 

source.52,53 Generally speaking, 

patients with cancer continue to 

believe that their physician is the 

most highly trusted information 

source, even though 48% consulted the Internet before seeing their 

physician.53 Print resources are 

also commonly used,54 but use of 

this type of material has decreased 

since the availability of online 

access to health information. 

Although information-seeking 

behavior in general decreases with 

age,55 most patients with cancer are 

particularly interested in information regarding treatment and side 

effects.21,56,57 

Whether or not patients are satisfied with the information that has 

been presented to them by clinicians, they often use the Internet to 

confirm or expand on that information.58,59 Some cancer centers 

have created their own educational 

programs to instruct patients and 

their family members on how to 

use the Internet.60 Although there is 

concern about the quality of information found on the Internet,61,62 

there is little evidence of adverse 

outcomes related to inaccurate 

information from the Internet. 

Patients with cancer use the 

Internet not only to obtain general 

information on a cancer diagnosis 

and its treatment but to also gain 

access to other patients with cancer and support groups where they 

roles of patients.65,66 Also, advertisements have increased the use of 

the National Cancer Institute 

Cancer Information Service by 

patients with cancer, their families, 

and the general public.67,68 

Until recently, print information 

resources have been second only 

to information obtained from clinicians. Although the findings of 

some studies suggest that print 

materials can have a positive effect 

on patient recall and satisfaction,47 

others have found that patients 

with cancer may be satisfied with 

this information source but it does 

not appear to have a significant 

impact on recall.69 The format of 

information sheets may affect the 

usefulness of these materials for 

patients.70 Literacy limits the usefulness of written materials for 

large portions of the population.71-73 

Low-literacy print materials or 

videos help increase patients’ 

knowledge.74 

Telephone help lines can be a useful source of information and 

emotional support for patients 

with cancer.75,76 The National 

Cancer Institute Cancer 

Information Service (CIS) telephone help line has provided cancer information support services68,77,78 and outreach services for 

patients with cancer and their 

families.79,80 Individuals with a 

recent cancer diagnosis often use 

the service to obtain treatment 

is for patients to understand 

be understood. Clinicians o

have a flawed understanding 

patients’ information needs 

consequently do not provide 

enough information or the k

information patients find us

Correspondingly, patients d

always immediately disclos

stantive information about t

symptoms or concerns; clin

play a key role in helping p

to self-disclose.1 Clinicians 

always appreciate the comp

of concerns that patients ha

and thus may not explore ar

important to their patients.93 

Clinicians overestimate thei

informativeness94 as well as 

level of understanding of th

patients with cancer.94,95 Wh

imparting information, clini

often use medical terms tha

patients do not understand, 

they do not check patient un

standing.96,97 Clinicians also 

not be aware of their patien

information-seeking and inf

tion-avoiding coping styles 

thus may not tailor the man

information delivery accord

The breast cancer literature

ticular, includes description

importance of the flow of in

tion among clinicians, patie

and patients’ spouses.102 Pati

have viewed sharing inform

as an attempt to share powe

control in the interaction.103 
Among patients with lung cancer, 

many did not understand their situation well enough to make independent decisions and physicians 

were not aware of the information 

gap.105 Not only do patients with 

lung cancer express greater satisfaction with physicians who are 

informative, they also trust these 

physicians more than do patients 

who perceive their physicians as 

less informative.106 

Given that patients with cancer 

with more concerns are also more 

likely to have poorer quality of 

life,107,108 clinicians need to engage 

in behaviors that encourage 

patients’ disclosure of these concerns. Patient-centered communication is characterized by effective 

efforts by clinicians to elicit 

patients’ fears and concerns109 and 

encourage more active patient participation in the consultation.110 

Patient-centered communication 

has been associated with higher 

patient satisfaction with the clinician, and better coping, adherence 

to treatment, and quality of life in 

populations with and without cancer.111-113 Poor patient-clinician 

communication has sometimes led 

to patients’ poor understanding of 

their disease and the process and 

intent of staging and treatment; as 

such, they may lose confidence in 

their medical care team.114 In one 

study, patients and family members generally preferred a patient

Understanding 

Interventions to improve communication are discussed in Appendix 

E, but mentioned here are prompt 

sheets, audio recorded consultations, and patient-held records. 

Prompt sheets used by patients 

with cancer can improve their ability to gather information during the 

consultation.116-119 When physicians 

addressed concerns on patients’ 

prompt sheets, patients’ anxiety 

decreased and their recall 

improved.120 Physicians also said 

that they thought that prompt 

sheets stimulated useful 

discussion.121 

Audio recordings of clinical consultations have been helpful for 

patients’ recall and assimilation of 

information.48,122,123 Such recordings 

also increase patient satisfaction51 

and may increase their participation at later consultations.124 

Recordings, however, have had 

inconsistent effects on anxiety and 

psychological distress in 

patients.50,125 Most of the studies on 

audio recordings were done with 

initial consultations only; the findings of some studies have suggested that using audio recordings 

would be beneficial for all consult 

visits.122 Physicians have become 

more accepting of audio recorded 

consults,126,127 and although it is 

unclear if audio recordings can 

improve physician-patient relationships,128 one study demonstrated 

of patient-held records

information files, or lo

has helped patients an

communicate more eff

one another.129-131 

B.5 Implications for F

Information needs, inf

resources, patient reca

patient-clinician inform

exchange are all areas 

further study. The limi

many of the studies to 

been that they have inv

sample sizes; patients 

ed number of types of 

minority, non-English 

and low-literacy patien

focus on the initial ph

illness. The informatio

patients with forms of 

than breast, colorectal

cancer warrant additio

ration. Further longitu

may help track patient

tion needs over time a

recall and understandi

information provided t

Lastly, cancer survivor

better sources of infor

rehabilitation, surveill

recurrence, and late ef

B.6 Communicating B

Communicating bad n

been the subject of som

earliest cancer commu

research. Although no 

140 
• Better informed 

• More motivated to follow 

through with further evaluation and treatment 

• Less emotionally distressed 

• Better able to ask questions 

and participate in the clinical 

encounter 

• Better prepared to make treatment decisions 

• Better able to navigate the 

health care system 

• Clear about the level of uncertainty of the diagnosis 

However, the authors of a recent 

review concluded that despite a 

large body of literature with seemingly sensible recommendations for 

delivering bad news and an increasing number of courses to train students and residents, the delivery of 

bad news continues to be stressful 

for clinicians and ineffective 

and/or traumatic for patients.132 

Clinician-related factors in 

communicating bad news 

Beginning physicians, residents, 

and medical students often deliver 

diagnostic information without 

having had training or support in 

the task.133,134 Most physicians were 

untrained in communicating bad 

news at the time they were first 

required to deliver it, and many 

fear and anxiety,135,136 and lack of 

forums to deal with their own feelings. Correspondingly, it is not 

surprising that patient reports of 

cold, impersonal, blunt, evasive, 

tactless, indirect, jargon-laden, and 

poorly timed delivery of news still 

appear in the popular press and the 

medical literature. Clinicians’ 

actions may favor their needs to 

reduce their own anxiety and 

uncertainty and bring the visit to 

closure rather than address the 

needs of patients.137 

Patient-related factors in 

communicating bad news 

Communication at the bad news 

visit is affected by patient-related 

psychological factors, cognitive 

functioning, and health literacy. 

Patients report that they felt upset 

or overwhelmed anticipating devastating news or after hearing it, making assimilation and recall of additional information difficult. Patients 

may function at a much lower cognitive level when they are critically 

ill than when they are well.138 Low 

health literacy may lead to confusion; for example, the word “positive” may connote something good 

to a patient unfamiliar with the 

reporting of test results.72 

ships between the patient an

ily members play important 

in the communication of ba

and prognoses. In many 

Mediterranean, Latin Ameri

black African, and Asian cu

it is still common for clinici

disclose cancer diagnoses to 

members and not the patien

Although younger patients i

ingly say that they want inf

tion, it is also common for e

these patients to relinquish 

control to family members. 

is controversy about how to 

cile views about patient righ

autonomy as articulated in m

stream Anglo-Saxon culture 

the views and values of indi

from other cultures. It is oft

ommended that the patient 

initially be given the choice 

what they wish to know; the 

sequences of this approach 

not been studied. 

The diagnosis of cancer is 

delayed in racial and ethnic 

minorities and individuals 

socioeconomic status.143-149 O

factor affecting this delay i

ative lack of trust and there

less open communication b

black patients and white cl

cians compared with racial

cordant pairs.150 Further res

can clarify whether providi

ily understood information 

context of a trusting relatio

when cancer is first suspec
in communicating bad news 

Health care system-related barriers 

to timely and confidential provision of bad news include discontinuity of care, lack of access, lack 

of a private space, and environmental noise. Scheduling of sameday face-to-face meetings is difficult within most health care systems. Because of this, when 

patients want to know test results 

as soon as possible, it is often necessary for clinicians to communicate with patients by telephone—a 

method that both agree is suboptimal. When bad news is communicated by phone, other members of 

the health care team may be 

unaware of what has already been 

discussed with the patient.151 Teamrelated issues have rarely been the 

subject of empirical studies. 

Effect of poor delivery of bad 

news on patients 

Poor delivery of bad news appears 

to have important effects on 

patients’ subsequent coping and 

anxiety.132 However, it is unclear 

whether following recommended 

methods for delivering bad news 

affects satisfaction, knowledge, 

ability to make decisions, or follow-though with care. Further 

research can determine the optimal 

balance and degree of flexibility 

needed in the elicitation of patient 

perspectives, provision of information, and reassurance that the 

later reflection may be different. 

Training for clinicians 

The curriculum at many medical 

schools in the United States now 

includes sessions on giving bad 

news. Intensive training courses of 

several days’ length designed to 

help residents and clinicians 

improve their skills in communicating bad news have a lasting 

impact on skills,152,153 but the 

majority of less intensive courses 

have been evaluated only in terms 

of satisfaction of participants and 

intention to use the learned skills.132 

The exploration of clinicians’ emotions is a key feature of effective 

training courses. Future research 

can identify other key elements, 

with the hope of accomplishing 

training using less intensive and 

more cost-effective interventions. 

Training for patients 

In medical encounters not involving cancer, training, guidance, or 

information for patients in anticipation of a clinician visit has 

shown promise in improving the 

outcomes of the consultation.154,155 

Patient interventions, including 

decision aids and prompt sheets, 

have been used to help patients 

decide about cancer screening.156 

However, there have been no studies about interventions for patients 

undergoing diagnostic testing for 

managing anxiety, disc

the diagnosis might af

patient’s life, legal ram

and social support.157 

Implications for futur

communicating bad n

Although there is a su

body of descriptive, at

and intervention litera

delivery of bad news, 

issues remain unstudie

the following: 

• Long-term impact 

types of delivery 

• Patient satisfaction 

timing and manne

nication 

• Management of p

anxiety following 

disclosure of bad 

• Role of family me

such discussions 

• Means of reducing 

anxiety so that suc

sions can flow mo

Studies of delivery of 

tumor progression afte

and treatment failure a

needed. The impact of 

cation among clinician

the same patients and 

system factors on the d

consistent information 

understood. 

142 
among treatment options, plan 

their lives, and receive optimal 

palliative care. Communicating 

prognosis, thus, depends on the 

physician’s ability to estimate the 

expected lifespan of patients with 

cancer, the patients’ desire to know 

the prognosis, and the physician’s 

willingness to disclose the true 

prognosis. Considering the goals 

of information exchange, clinicians discussing prognosis with 

patients and families must choose 

what to disclose, when disclosure 

should occur, how to disclose 

prognostic information, and to 

whom the information should be 

disclosed. 

Much of what follows here is a 

summary of the review by 

Hagerty et al.158 of studies published before 2004, in which those 

authors suggested important 

themes in discussing prognosis 

with patients. Most of the studies 

reviewed had involved patients 

with early stage cancer and 

focused on the initial diagnosis 

and treatment decisions. The 

largest number of studies has been 

conducted in Australia, with the 

United States, the United 

Kingdom, Japan, and continental 

Europe also represented. Given 

large cultural differences among 

English-speaking, Mediterranean, 

and Asian cultures in discussing 

prognosis, and perhaps differences 

within the English-speaking 

world, many of these findings 

sions of prognosis is mixed and 

difficult to compare across populations.158 In one study, most patients 

with breast cancer knew their 

prognosis,159 but more recent studies of patients with melanoma and 

advanced cancer indicate otherwise,137,160,161 suggesting that uncertain or serious prognoses are withheld more often. There appears to 

be both a norm of silence161 and a 

norm of vagueness162 among physicians, patients, and caregivers in 

which euphemisms and discussions of treatment plans overshadow more frank discussions of difficult topics. When discussions of 

prognosis do occur, they are 

usually initiated by physicians.163 

What patients want to know 

In responding to surveys, patients 

tend to endorse wanting information about prognosis44,97,137,164-168 and 

value clear and straightforward 

presentations of data. However, in 

a study in the United States in 

which additional details about 

patients’ preferences were sought, 

many patients expressed reservations and qualifications about universal disclosure of quantitative 

survival estimates and many preferred qualitative rather than quantitative estimates;168,169 surveys of 

patients in Australia have shown 

no preference.170 Patients’ views 

may be ambivalent and inconsistent. They may reinforce physician 

wished to have discussed lif

expectancy with their physi

and only 59% of patients in 

Australia wanted to know th

prognosis at the time of dia

of metastatic disease.170 Man

patients preferred to be aske

information they wanted be

was disclosed and also wan

be asked when the disclosur

should take place.170 Patient

depression appeared more i

ed in knowing the most dire 

bilities, whereas patients wh

not depressed were more lik

want information about the 

mal possible survival or wa

information at all.170 Anxiou

patients, however, generally 

ed discussions about progno

were more likely to prefer t

nicians disclose that inform

family members.168,171 The fi

of studies involving conven

samples suggest that women 

to want more information th

do,166 but these findings wer

adjusted for actual expected 

nosis. Most studies were co

ed considering preferences 

necessarily considering the 

and nature of the patient-cli

relationship. It may be that 

nature of the communicatio

process also influences pati

preferences and responses a

should be studied in greater 
treatment options, physicians still 

commonly have difficulty providing prognostic information for several reasons. First, physicians’ 

prospective estimates of prognosis 

are usually more favorable than 

indicated by the actual course of 

the disease.172 Second, although the 

vast majority of physicians favor 

truth-telling, many feel uncomfortable about discussing dire prognoses173 and intentionally exaggerate prognoses when communicating with patients and families.174 

Correspondingly, patients frequently report not knowing their 

prognosis95,175 or overestimate their 

prognosis, even when provided 

accurate information.95,105,176-182 In 

these studies, higher educational 

level, lower levels of depression, 

and higher patient ratings of their 

physician were associated with 

better understanding, but further 

research is needed to examine 

causal relationships among these 

factors. 

Participants in discussions of 

prognosis 

Some literature exists on family 

involvement in cancer care, but little has been written explicitly 

about sharing of prognostic information.170 Although most patients 

prefer to have a family member 

present during discussions of prognosis,164,171 patients do want control 

over the information that family 

members first and using 

euphemisms diminished a patient’s 

hope.35 Disparities in provision of 

prognostic information has been a 

concern. Although most studies 

suggest that white patients of higher socioeconomic status tend to get 

more information than poor black 

patients, one qualitative study suggested the opposite outcome with 

regard to prognosis; poorer and 

nonwhite populations reported 

having more discussions of prognosis.184 

The results of several studies suggest that patients get information 

about prognosis from several 

members of the health care team, 

and that such information may be 

complementary or sometimes haphazard151 and contradictory. In one 

study, an organized team approach, 

in which the patient presumably 

received well-coordinated information increased patients’ understanding of their illness, including 

prognosis.185 Our understanding of 

specifically how teams can 

improve understanding and recall 

of prognostic information is limited, however. 

Elements of effective discussions 

of prognosis 

Although most studies focus on 

the content of discussions of prognosis, patients frequently suggest 

that the manner of presenting the 

they felt known, conne

acknowledged.186 

Communicating clinic

is challenging, raising 

about framing, use of 

and communication of 

Patient and clinician u

of statistics may be lim

misunderstandings abo

or mean survival may 

ly concrete interpretati

Graphical displays are 

used to improve patien

standing of statistical d

findings of at least one 

gested that patients pre

words to pictures.170 In 

however, health literac

assessed. Patients tend

framing estimates in p

(survival) rather than i

mortality. Use of a mix 

(survival) and negative 

language may enhance 

ing. Other recommend

the literature conform 

of general patient-cent

munication skills and 

elements specific to ca

munication or prognos

rizing and checking un

active listening, privac

time, and honesty.35 

Increasingly, the Intern

patient advocacy organ

provide more ready ac

prognostic information

recently, no studies ha

ducted on reconciling 

144 
most patients though that contradictory information would not 

undermine their trust in their 

physicians, a significant minority 

felt that it might. Those patients 

also tended to express that there 

was one correct answer to the 

question and reported discomfort 

with uncertain or contradictory 

primary data. Patient access to primary data on prognosis and ways 

to discuss this data effectively with 

health professionals is an important area for future research. 

The communication of hope is frequently encountered in the context 

of the discussion of prognosis.189 

However, patients’ experience of 

hope is related both to the process 

of communication as well as to the 

content of communication. 

Providing up-to-date information, 

answering questions, and offering 

emotional support are often seen as 

engendering hope, whereas a cold, 

impersonal clinical style appear to 

diminish hope.190 This finding 

implies that frank and honest discussion of prognosis need not 

diminish hope if it is conducted in 

a patient-centered manner. In some 

situations, the dialogue on hope 

appears detrimental to the discussion of prognosis.191 Some patients 

think that the burden of maintaining the appearance of a “fighting 

spirit” limits discussions of their 

fears and concerns, including about 

prognosis and quality of life. 

cultures do not.

However, there 

is significant change in some 

areas. Family members may take a 

more primary role in information 

exchange in Mediterranean and 

Asian cultures compared with 

Anglo-Saxons. In Spain,192 for 

example, over the past 10 years, 

there has been a radical shift from 

nondisclosure to disclosure. 

Relevant to settings in the United 

States, however, is recognition that 

several factors could contribute to 

patients’ desires for information 

about prognosis, including culture 

of origin, health literacy, educational level, prior illness experiences, and degree of cultural 

assimilation. Generalizations can 

be made on population levels, but 

they may not apply to individual 

patients; clinicians must be prepared to inquire about individual 

beliefs and values. We have not 

encountered any published work 

suggesting how the level of a clinician’s cultural awareness affects 

discussions of prognosis. 

Outcomes of discussions 

of prognosis 

Few outcome studies have separated discussions of prognosis from 

discussions of bad news or other 

aspects of cancer care. The results 

of studies that have been published 

suggest associations between 

recalled discussion of prognosis 

and increased satisfaction, as well 

whether collusion should be 

ken down quickly194 rather t

maintaining “necessary coll

temporarily195 to soften the b

(by delaying disclosure unti

be more easily assimilated)

cross-sectional design and p

ble bidirectional causality m

difficult to draw conclusion

the current literature. Future 

research on the relationship 

between discussions of prog

and quality of life is needed

We are aware of no interven

designed specifically to imp

the delivery of prognostic in

tion. However, inference mi

drawn from intensive works

to improve delivery of bad n

which have enhanced clinic

communication skills for at 

12 months following the int

tion.152,153 The most importan

vention in the United States 

large randomized trial for p

with a prognosis of no more 

six months.196 Specially train

research nurses provided in

tion about the disease, treatm

and prognosis, convened ind

ual and family meetings, an

cussed and documented pat

and family preferences with 

goal of improving commun

about advance directives, im

ing pain control, and lessen

likelihood that patients wou

receive unwanted intensive 

The trial yielded completely 
nician relationships and involve 

repeated contact and reinforcement 

in order to be effective.197 

Implications for future study of 

communicating prognosis 

Physician optimism and reluctance 

to paint a grim picture, along with 

patients’ highly variable desire to 

hear complete prognostic information, create a complex set of factors to consider in discussions of 

prognosis. Communicating statistical information is challenging 

especially with patients of low 

health literacy and low numeracy; 

there is very little empirical 

research to draw on in determining 

how best to communicate clinical 

evidence with these patients. 

Research should also address cultural values and beliefs and family 

issues. Patients need hope, but it is 

not known the degree to which 

skilled clinicians can provide 

hopeful messages without distorting prognostic information. 

Studies to date have addressed 

only parts of this complex picture, 

which may explain failure of even 

large innovative studies to improve 

communication about prognosis 

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154
 
One of the most important 

features of patient-clinician 

communication and cancer 

care is affective communication, 

an arena of particular salience, as 

patients are confronting a lifethreatening diagnosis, treatment of 

uncertain effectiveness with potentially debilitating side effects, and 

an uncertain future. Patients experience and often express a variety 

of emotions in their interactions 

with clinicians, including fear,1 

humor,2,3 nervousness, worry or 

sadness, or fatalistic thinking.4,5 

It is particularly important to 

understand the factors that lead to 

recognition of and response to 

patients’ emotional states, given 

their potential effect on treatment 

outcomes. Depression, anxiety, 

and adjustment disorders have a 

major effect on quality of life.6-11 

In addition, depression has been 

found to influence responses to 

chemotherapy, risk of death,12 and 

experience of pain.13 Anxiety has 

been shown to be a predictor of 

clinical response to treatment.12 

Early recognition of depression 

and anxiety is crucial for reducing 

the risk of suicide and social isolation and for initiating pharmacological and psychological treatments that improve quality of life. 

Most patients with cancer who 

have mental disorders have adjustment disorders and not major 

depression or severe anxiety disorders.9 Recognition of these disorders may lead to mobilizing social 

support14 and psychotherapeutic 

interventions that could improve 

quality of life and perhaps increase 

the likelihood that cancer treatment would be completed. 

However, the diagnosis of depressive and anxiety disorders is often 

missed in oncology practice. The 

findings of one large study demonstrated that emotional distress was 

recognized by physicians in 29% 

of affected patients,15 and results of 

another study showed that oncologists correctly identified 17% of 

patients who were found to be anxious and 6% of those who were 

found to be depressed on a standardized anxiety and depression 

scale.16 Communication barriers 

influence the diagnosis of mental 

illness,17-21 and some issues are particularly salient in the cancer setting. Many common symptoms of 

depression are also symptoms 

associated with cancer or its treatment, including fatigue, lack of 

energy, insomnia, and loss of 

appetite. Thus, clinicians must rely 

to a greater degree on elicitation of 

the patient’s emotional state and 

maintain the possibility that these 

physical symptoms may also signify underlying depression. 

Research to date on the role of 

emotion in cancer care primarily 

has focused on three issues: the 

psychological benefits of patient 

expression of emotion during the 
C.1 Benefits of Patients’ 

Emotional Expression 

Patients who share their emotions 

and feelings during medical consultations often experience therapeutic benefits. The use of humor 

has been found to decrease stress, 

increase comfort levels, and 

restore immune function.2,3 Patient 

narratives about their illness experience help to decrease emotional 

distress.22 Conversely, patients who 

restrain the expression of their 

negative emotions may become 

more anxious, depressed, and confused after receiving a cancer diagnosis.23 Disclosing emotions may 

even contribute to improvements 

in physical symptoms.24 The written disclosure of emotion can also 

buffer the negative effects of the 

inadequacy of social support.25 

Although emotional expression can 

have positive benefits, patients 

appear to vary in the kind and 

manner of emotions expressed. For 

example, humor in consultations 

can be either positive or negative. 

Patients with testicular cancer have 

reported that humor in the consultation can dispel tension and make 

them feel “normal,” but, if such 

humor is managed poorly, it can be 

a source of humiliation or stigma.26 

Just as disclosing emotions may 

have cathartic effects, failing to 

disclose emotions may hurt emotional processing. Patients may fail 

to underreport their difficulties 

with cancer to their clinicians.28 In 

one study, the worry of appearing 

disrespectful to clinicians caused 

some patients to withhold their 

feelings about wanting to reconsider decisions about treatment.29 

C.2 Clinicians’ Responsiveness to 

Patients’ Emotional States 

Most patients with cancer respond 

favorably when clinicians are 

receptive and interested in their 

emotional states and well-being. In 

one study of patients terminally ill 

with cancer, the patients perceived 

their clinicians more positively 

when they offered more emotional 

support.5 In another study, oncologists’ affective tone and socioemotional behaviors were associated 

with greater patient satisfaction.30 

Facilitating patients’ emotional 

processing helped them to participate more effectively in making 

decisions about palliative care.31 

Because cancer also has a significant emotional impact on patients’ 

family members, clinicians may 

need to help families address their 

own emotional distress and experiences.32 

Clinicians typically are not effective at recognizing patients’ emotional cues or at uncovering their 

fears and concerns, although some 

clinicians may be minimally 

receptive to patients’ emotional 

cal symptoms rather th

logical problems.35 Ad

difficulty is that the pa

are the most anxious o

are often the least likel

their emotional concer

findings of one study f

nurses were not accura

fying patients’ concern

could not even identify 

three primary concern

were biased toward co

physical symptoms an

treatment compared w

al and other psychosoc

The lack of communic

time, and a quiet priva

ment in hospital settin

be barriers to clinician

of and responsiveness 

emotions.37 With respe

the findings of several 

demonstrate that educ

ventions could help cl

become more adept at 

the patient’s emotiona

Clinicians can elicit th

concerns of patients w

more effectively with 

patient-centered comm

tactics such as open-en

tions, focusing on and 

psychological issues, a

statements.18 In contra

is less likely when clin

leading questions, focu

cal aspects of health, a

turely move into givin

reassurance. 

156 
of the studies have focused on 

patient-clinician communication 

during the survivorship phase, 

with emphasis on the management 

of anxiety related to uncertainty 

and on the process of reassurance. 

Cancer survivors with disease in 

clinical remission are often anxious and present physical symptoms that clinicians interpret as 

requests for reassurance. However, 

in other settings, clinicians’ 

expression of reassurance to 

patients without obvious disease 

can sometimes heighten the 

patients’ anxiety.40-42 In one of the 

few studies of reassurance, Stark 

et al.43 reported, not surprisingly, 

that in more than 90% of posttreatment oncology visits, clinicians 

attempted to provide reassurance, 

either spontaneously, or, more 

commonly, in response to patientreported physical symptoms. 

These attempts at reassurance 

often produced initial lowering of 

the anxiety level followed by paradoxical worsening of anxiety. 

Spontaneous reassurance (“you 

look well”) increased anxiety in 

the most anxious patients before 

their next scheduled visit, and 

offering a treatment plan without 

explanation raised the level of anxiety in all patients within one week 

after the consultation, regardless of 

the baseline anxiety level. 

Moreover, providing reassurance 

may worsen outcomes if it appears 

to avoid the focus of the patient’s 

provide reassurance. If extrapolations from studies of populations 

without cancer hold,41,42,44 clinicians’ reporting of normal test 

results may provide only temporary reduction of anxiety. In contrast, providing simple reassurance 

while offering clear explanations 

has a more neutral effect on anxiety.43 Through effective communication, clinicians can contribute at 

least temporarily to a transient 

decrease of patient anxiety, but the 

long-term effects of communication on anxiety in cancer survivors 

are unknown. 

C.3 Emotional Well-Being as an 

Outcome of Patient-Clinician 

Communication 

In the previous sections, we examined patients’ emotional expressions and clinicians’ responsiveness to these cues, but other elements of patient-clinician communication can also influence the 

affective states of patients with 

cancer following the consultation. 

For example, the way clinicians 

manage information can have a 

significant effect on patient emotions. Research has shown that less 

anxiety and depression were experienced by children with cancer in 

the initial stages when clinicians 

were open about the diagnosis and 

prognosis.45 Information about 

diagnosis may lead to greater 

hope, although the time between 

satisfaction.47 

Clinicians’ communication 

can directly influence patien

emotional well-being. For e

ple, the degree to which pat

perceive their clinicians’ co

nication as patient-centered 

facilitative may decrease po

sultation anxiety, although t

relationship was weaker for 

patients with more advance

ease.48 Communication that 

help reduce anxiety include

preparing the patient for dia

giving the patient clear info

tion, providing written infor

tion, discussing questions an

ings, encouraging the patien

involved in decision-making

being reassuring.47 Addition

compassionate communicat

empathy from clinicians als

play a role in reducing patie

iety and emotional distress.4

Other variables that may aff

patients’ emotions after the 

tation visit revolve around t

patient’s participation in dec

making. As patients particip

treatment decisions, they m

more anxiety regarding thei

responsibility in the outcom

that treatment. However, if 

are more satisfied with their 

increased level of involvem

then increased patient partic

is associated with reduced e

tional distress.50 
subsequent functioning and quality 

of life. Yet, clinicians rarely 

engage patients in discussions 

about their fears and worries. 

Emotional dialogue is embedded 

in other communication activities 

such as exchanging information, 

making decisions, and providing 

access to care, yet the interface of 

instrumental and affective communication is poorly understood. For 

example, is patient involvement in 

decisions facilitated by emotional 

dialogue and understanding, not 

just the provision of information 

and choices? Interventions to 

improve emotional responsiveness 

in clinicians have been successful 

in small-scale studies, but future 

research should identify and overcome barriers to participation in 

these interventions and provide 

means for sustaining the positive 

effects. 

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PN, Miller DK. Psychosocial-spiritual correlates of death distress in patients with 

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Badger S, Varghese F, Robertson M. 

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Pasnau RO. Critical review of psychosocial interventions in cancer care. Arch Gen 

Psychiatry. 1995;52:100-113. 

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al. Malignant melanoma. Effects of an 

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1997;24:S1. 

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Br J Psychiatry Suppl. 1996;30:109-116. 

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MH. Depression burden, self-help interventions, and side effect experience in 

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logical response on surviva

cer: a population-based coh

Lancet. 1999;354:1331-133

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Lema MJ, Zevon MA. The 

between depression and pai

cancer and chronic non-can

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Psychooncology. 2005;14:5

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V, Saul J. Psychiatric morb

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cancer. Br J Cancer. 2001;8

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their patients’ reported phy

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(18) Maguire P, Faulkne

Elliott C, Hillier V. Helping 

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(21) Carney PA, Eliassen MS, Wolford 

GL, et al. How physician communication 

influences recognition of depression in primary care. J Fam Pract. 1999;48:958-964. 

(22) Carlick A, Biley FC. Thoughts on 

the therapeutic use of narrative in the promotion of coping in cancer care. Eur J 

Cancer Care (Engl ). 2004;13:308-317. 

(23) Iwamitsu Y, Shimoda K, Abe H, et 

al. Differences in emotional distress 

between breast tumor patients with emotional inhibition and those with emotional 

expression. Psychiatry Clin Neurosci. 

2003;57:289-294. 

(24) Rosenberg HJ, Rosenberg SD, 

Ernstoff MS, et al. Expressive disclosure 

and health outcomes in a prostate cancer 

population. Int J Psychiatry Med. 

2002;32:37-53. 

(25) Zakowski SG, Ramati A, Morton 

C, Johnson P, Flanigan R. Written emotional disclosure buffers the effects of 

social constraints on distress among cancer 

patients. Health Psychol. 2004;23:555­

563. 

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humor for men with testicular cancer. Qual 

Health Res. 2004;14:1123-1139. 

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KM. The role of disclosure patterns and 

unsupportive social interactions in the 

well-being of breast cancer patients. 

Psychooncology. 2004;13:96-105. 

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Khuri FR. Communicating suffering in pri

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de Haes JC. Doctor-patient communication 

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145-156. 

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RW, Verhaak CM, et al. Patient participation in discussing palliative radiotherapy. 

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partners and other key relatives: a review. 

Eur J Cancer. 2003;39:1517-1524. 

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Schade E, et al. Problems to discuss with 

cancer patients in palliative care: a comprehensive approach. Patient Educ Couns 

2002;47:195-204. 

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Tattersall MH, Dunn SM. Oncologists’ 

reactions to cancer patients’ verbal cues. 

Psychooncology. 2002;11:47-58. 

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of concerns by hospice patients and their 

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women undergoing chemotherapy. Patient 

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Developing empathy to improve patient 

care: a pilot study of cancer nurses. 

Internat J Palliat Nurs. 2001;7:146-150. 

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results of self administered questio

survey. BMJ. 1997;315:572-575. 

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160
 
Much of the research on 

decision-making in cancer care has focused on 

three issues: 

• Patient preferences for involvement in decision-making 


• Relationship between patient
 

involvement in decision-making
 

and postconsultation outcomes 


• Understanding of the correlates 

of patients’ decision preferences 

Three phases of the cancer care 

continuum are predominant in the 

literature on decision-making: 

screening, treatment, and end of 

life. Decisions to screen for specific cancers arise when there is a 

choice of screening method (such 

as for colorectal cancer screening) 

or debate about the overall value of 

screening (such as with prostate 

cancer screening). Decisions about 

treatment arise when several treatment options are available and no 

single option is best for all patients 

(as often occurs with breast cancer). At the end of life, decisions 

involve discontinuing anticancer 

treatment, advance directives, treatment setting (including hospice), 

and assisted suicide. Decision aids 

are included in the discussion on 

interventions in Appendix E. 

D.1 Decision-Making in the
 

Screening Phase
 

Cancer screening programs— 

specifically those designed to 

detect breast, prostate, cervical, 

and colorectal cancer—aim to sort 

asymptomatic people who have 

cancer from those who do not. 

Increasingly, efforts have been 

made to promote informed decision-making on the part of the 

health care consumer and the clinician when discussing and evaluating screening options. Decisionmaking about screening often 

involves complex personalized discussions with eligible individuals 

about the risks and benefits of 

screening procedures. 

Communication about Risk 

Screening programs and clinicians 

vary in how they communicate, 

especially the degree to which they 

promote informed decision-making with eligible individuals. A 

2002 Cochrane review addressed 

the effects of personalized versus 

general risk communication on 

individuals’ decisions about 

whether to participate in health 

screening programs.1 The specific 

goal of that review was to see 

whether personalized communication about risk for disease influenced any of several possible outcomes. Personalized communication was defined as information 

tailored to an individual’s personal 

history or medical conditions that 

affect his or her risk of cancer. 

Personalized risk communication 

varies in detail and complexity as 

*This appendix was also co auth

Jennifer Carroll, MD, MPH, Rese

Assistant Professor, Department 

Family Medicine and James P. W

Cancer Center, University of Roc

School of Medicine and Dentistr

Timothy E. Quill, MD, Professor 

Medicine, Psychiatry and Medica

Humanities, and Director, Cente

Ethics, Humanities and Palliative 

University of Rochester School o

Medicine and Dentistry. 
• Behavioral, such as actual 

receipt of a screening test or 

adherence to choice regarding 

screening 

• Cognitive, such as knowledge 

of risk or accurate risk 

perception 

• Affective, such as anxiety, 

emotional well-being, satisfaction with decision made, or 

decisional conflict domains 

The review included randomized 

controlled trials of people who 

were involved with “real life decisions” about whether to undergo 

screening, studies in which there 

was a risk communication information component to the intervention, studies that addressed decision-making about screening programs, and studies that included 

any of the aforementioned outcome measures. Of the 13 heterogeneous identified studies that met 

the inclusion criteria for the 

review, 10 addressed personalized 

risk communication related to 

breast cancer screening and one 

each, to cervical, colorectal, and 

prostate cancer screening. Only 

some studies incorporated patientclinician communication; others 

focused on mass media and tailored communication interventions. In the six studies in which 

the intervention included a component of counseling (usually a 

health educator or graduate stu

informed decision-making. An 

interesting finding was that if the 

personalized information was 

more detailed or numerically specific relative to the patient’s own 

risk, there was less receipt of cancer screening than when the information was provided in a more 

general way. 

Patient involvement and 

postconsultation outcomes 

Studies on decision-making about 

screening thus far have primarily 

focused on breast cancer compared 

with other types of cancer. The 

studies have tended to include only 

a limited number of outcomes, 

usually, the actual receipt of 

screening services. Knowledge of 

the processes by which communication and decision-making 

informs other screening-related 

outcomes remains limited, yet 

these other outcomes may also be 

responsive to change. Effect modifiers (such as high risk status) may 

also contribute to decision-making 

regarding cancer screening and 

detection. Research published 

since 2002 has involved examination of aspects of communication 

and decision-making processes 

about screening for types of cancer 

other than breast cancer) and have 

also included diverse populations. 

More recent studies have yielded 

additional information about com

with their physicians i

patients’ decisions to u

orectal cancer screenin

er cross-sectional surv

viduals) following the 

phase of the study, par

who reported that they 

communication with th

were more likely to ha

screened (36%) accord

recommended guidelin

participants reporting 

munication (17%). Th

predictors of colorecta

screening or intent to c

screening among indiv

low income included h

line risk of disease, se

and recall of physician 

dation.3 This finding w

explored by Manne et 

collected data from 53

individuals diagnosed 

orectal cancer and fou

physician support, fam

and cancer-related dist

related to perceived be

screening. 

In another study, the d

actual levels of patient 

over decisions regardin

specific antigen (PSA) 

were examined.5 Both 

after visits, patients ex

preference for a shared 

to the actual decision. 

focused on decision-m

comes and role prefere

encountering differing 

162 
was shifted toward greater patient 

control. Twenty-five percent of 

men reported having greater decisional control over the PSA test 

than they had wanted, and 30% of 

men who wanted a shared approach 

made the decision themselves. The 

findings of another study6 demonstrated that the rate of PSA screening decreased from 98% to 50% 

when information was given with 

greater intensity and through a 

higher number of media (in person, video, etc.). 

Correlates of patients’ decision 

preferences 

Another line of research has 

involved evaluation of the role that 

belief systems and sociocultural 

characteristics play in decisionmaking about cancer screening. 

Among black women, for example, those who had had mammography were more likely to report 

having had recent contact with a 

physician; not surprisingly, they 

tended to believe that screening 

should be done annually and that 

early detection improves outcomes.7 

In a study about barriers to screening in rural Appalachia,8 physicians 

identified such barriers as time 

constraints and conflicting guidelines. Physicians’ perceptions that 

patients do not value prevention 

had a negative impact on communication about cancer screening. 

than the development of a trusting 

relationship, clinician responsiveness to patients’ concerns, and 

understanding of the patients’ 

views. Future work on decisionmaking in cancer screening needs 

to explore other outcomes, such as 

the cognitive and affective pathways of decision-making, rather 

than measuring only the receipt of 

screening service. Also, measures 

or tools to assess decision-making, 

rather than just personalized risk 

communication per se, are needed. 

The association between more 

detailed information and lower 

uptake of screening services is a 

curious finding that deserves further study, suggesting there may 

be a “dose-response” relationship 

to information about personalized 

risk and intention or receipt of 

cancer screening services. Perhaps 

more detailed communication 

about the relationship between 

one’s personal risk and populationwide benefits of cancer screening 

may attenuate one’s sense of personal need to undergo screening, 

given the marginal personal gain. 

Thus, increasing the communication may have the paradoxical 

effect of lowering an individual’s 

use of cancer screening services. 

Other poorly characterized factors 

may also be effect modifiers on 

decision-making about cancer 

screening. 

chemotherapy) or irrevocabl

as mastectomy vs. lumpecto

dominate the cancer commu

tion literature. The most dif

decisions are those that invo

tradeoffs between quantity a

quality of life and those that 

small but statistically signif

difference in clinical outcom

Patient preferences for 

involvement in decision-ma

The findings of surveys of p

with cancer regarding their 

ences for involvement in tre

decisions suggest that patien

wishes are often difficult to 

and that they change over ti

Some studies have indicated 

most patients prefer an activ

collaborative role,9-13 and oth

studies have demonstrated t

patients generally prefer the 

cian to make the final treatm

decisions.14-16 More importan

evidence suggests that patie

erences are affected by a nu

of factors. In cancer care, o

the key factors is the severit

illness. Patients who are sick

or more distressed generally 

to relinquish control of deci

to clinicians.17,18 Patients wh

older and less educated also 

more likely to prefer patern

decision-making models, w

younger and more educated 

patients desire more active a

collaborative roles.14,18-21 In o
patient’s health literacy has not 

been clearly linked to patient preferences for involvement, it is related to their ability to actively participate in these interactions,23,24 an 

issue discussed later. 

The wide variation in patients’ 

preferences regarding involvement 

in decision-making has prompted 

some investigators to call for tailored approaches to assessing 

patient preferences.9,25 Support for 

this position is found in several 

studies that have indicated that a 

substantial number of patients with 

cancer do not achieve their desired 

level of participation in the decision-making process.15,18 Butow26 

found that most patients with 

breast cancer did not obtain their 

preferred level of involvement 

(29% and 37% were more and less 

involved than preferred, respectively). Patients who had a mismatch on preferred and actual 

involvement expressed greater 

anxiety following the consultation. 

Physicians are not particularly 

good judges of patient preferences9,27 nor do patients and physicians perceive the decision-making 

process in the same way (e.g., 

shared or physician control12). 

Patient involvement and 

postconsultation outcomes 

A number of studies have been 

conducted to examine the relation

a choice for initial treatment (e.g., 

breast removal or breast conservation) was correlated with a shortterm reduction in depression and 

anxiety following treatment.28,29 

However, in another study, the perceptions of patients with breast 

cancer regarding the choice of 

adjuvant chemotherapy were not 

related to subsequent quality of 

life.30 The findings of another 

study showed that the degree to 

which patients with early breast 

cancer actively participated in their 

treatment consultations was related 

to the degree to which they 

assumed responsibility for the 

decision one year following treatment.31 The patient’s self-report of 

involvement in the consultation at 

the time of consultation also was 

predictive of having a choice for 

treatment one year later. In turn, 

decision responsibility and perceived choice were predictive of 

health-related quality of life at 

one year. 

Patient satisfaction with care and 

decisional regret has been the subject of considerable attention in 

research on communication 

between clinicians and patients 

with cancer. Some evidence has 

indicated that the greater the 

match between the preferences for 

involvement of patients with breast 

cancer and their perceived actual 

involvement, the less decisional 

regret and greater patient satisfac

Patients reporting a sh

with the physician wer

isfied and evaluated th

cians’ communication 

ably than did patients 

that their physicians ex

made treatment decisio

Decision aids can help 

patient-clinician comm

about treatment prefer

which, in turn, contrib

greater patient satisfac

decisional conflict.34,35 

The relationship betwe

involvement in the dec

ing process and outcom

part be mediated by cl

efforts to encourage gr

participation. For exam

ies that have involved 

observational and self-

ures, patients with can

more active participan

clinicians used partner

ing to encourage patie

ment.36,37 In turn, clinic

of patient participation 

sense of having a choi

ment and greater satisf

care.38 

Correlates of patients

preferences 

The quality of patient-

communication can af

decisions and decision 

and some research has 

other factors affecting 

164 
alternative and nonconventional 

treatments are influenced by a host 

of factors, such as having a close 

friend or relative who has died 

from cancer when receiving conventional treatments, beliefs, need 

for control, side effects of conventional treatments, poor communication with physicians, and expected benefits of treatment.40 Media 

hype about remarkable cures can 

also predispose individuals with 

cancer to choose experimental and 

nontested treatment.41 Regardless 

of the source of influence, clinicians often have little understanding of patients’ reasons to forego 

traditional therapy and/or choose 

alternative approaches. 

There is a large body of literature 

on decision aids for assessing 

patients’ decision preferences in 

general, and in the setting of cancer care specifically. The vast 

majority of studies on decision 

aids do not address their impact on 

patient-clinician communication. 

Research that has investigated 

their impact on communication 

will be reviewed later, in the discussion of patient activation interventions. In reviews of nearly 200 

decision aids pertaining to health 

care decisions of all types, 

O’Connor et al. reported that most 

of the aids were provided before 

the consultation to make decisions, 

included an emphasis on information about treatment options and 

about options, lowered decisional 

conflict, and reduced the proportion of people remaining undecided 

about the treatment. Importantly, 

simple decision aids seemed to be 

more effective than complex ones 

with respect to knowledge gained, 

more realistic expectations, and 

greater concordance between values and preferences. Contributions 

of decision aids to health outcomes and cost of implementing 

such interventions require further 

study. A follow-up to that review 

highlighted the fact that many of 

the decision aids described in the 

literature lack clear conceptual 

explanations of processes by 

which they are expected to achieve 

their goals, fail to recognize or 

acknowledge the values embraced 

by the decision aid itself, and are 

not thoroughly evaluated.35,42 

In cancer care, resources to support decision-making should take 

into account not only patient values but also patient competencies; 

patients with cancer often want as 

much information as possible but 

can be overwhelmed with the 

information available and the complexity of decisions. Continued 

development and evaluation of 

decision aids, especially ones that 

use interactive technology, may be 

resources for optimizing patient 

involvement in decision-making in 

a progressive, iterative fashion.43 

patient involvement in treat

decision-making per se, is t

most important factor affect

cancer outcomes. For exam

a study of patients with colo

cancer, the perception that t

clinicians explained treatme

options in a clear and unhur

manner was especially impo

to most patients, regardless 

preferences for decision-ma

roles.22 This finding is very 

to that of a qualitative study

which women with a variety 

cancers differed in their pre

ences for involvement in de

making but were similar in 

most reported that judgmen

about whether the right dec

was reached was related to 

ing of being listened to, inc

in the decision-making proc

(regardless of who made the 

decision), and trust in the ph

cian. Specific communicatio

strategies that may facilitate 

patient-clinician communica

about treatment include exp

agenda setting, active listen

checking understanding, off

opportunities for involveme

endorsing participation, and 

nonverbal behaviors that co

empathy and warmth.45 It re

unclear how often the patien

cian conflict about the treat

and screening decisions occ
point at which relief of pain and 

other symptoms takes precedence 

over prolonging survival. There are 

no clear landmarks for the transition to end-of-life care, complicating both the communication challenges and their study. Much of the 

literature on decision-making at the 

end of life is based on individual 

case reports, qualitative interviews 

and focus groups, attitudinal surveys, and expert opinion rather 

than on observation of interactions 

and surveys addressing specific 

communication tasks.46 Older studies from the hospice literature are 

not easy to access with use of standard search strategies. The studies 

that do exist indicate gaps in communication that result in inadequate symptom management, lack 

of emotional support, excessive use 

of medical technology, and insufficient use of hospice care.47 

In general, patients, families, and 

clinicians consider patient involvement in decisions during the endof-life phase to be important,48 and 

most patients want to participate in 

such decisions.49 However, the 

results of studies have suggested 

that there is substantial variability 

in patients’ wishes to be involved, 

that discussions about end-of-life 

issues are often inadequate, 50 and 

that clinicians usually underestimate patients’ desires to participate in decisions.9 Outcome measures have been developed to determine the quality of life for patients 

lations and settings.51 

End-of-life decision-making focuses on four areas: discontinuing anticancer therapies, the settings for 

end-of-life care, advance directives, 

and assisted suicide. Decisions in 

each of these areas involve the 

patient as well as the family;52-55 in 

fact, about half of all patients lose 

decision-making capacity before 

their deaths, so family-based decision-making is common.56 

Discontinuing anticancer 

therapies 

The decision to forego or cease 

anticancer therapies may occur at 

the point when gains in survival 

and functioning and reduction of 

symptoms may be offset by a 

decrease in the quality of life due 

to the treatment itself. However, 

studies suggest that consideration 

of quality of life has had little 

influence on clinicians’ recommendations and subsequent decisions to continue or cease 

chemotherapy.57 Clinicians who 

use third-line and fourth-line 

chemotherapy in the last months 

of life in the absence of clinical 

evidence of its effectiveness58 tend 

to be less skilled in communicating.59 Presumably, decisions on 

such treatment are based on clinicians’ emotions (feelings of guilt, 

failure, and blame) rather than 

open discussions about alternatives 

treatment with the fail

clinician and prefer to 

even long-shot experim

py to transitioning to a 

approach.62,63 Correspo

many patients’ decisio

on personal and spiritu

systems, advice from o

fear.64 

Accurate and complete 

about options at the en

necessary for informed 

making, but according 

naire surveys, most pa

fully understand their r

withdraw treatment on

or their rights to aggre

tom management with 

doses that may uninten

ten death.65 Less than h

patients were presented 

ment choices and infor

about quality of life.66 

patients who reported 

in decisions about end

had higher levels of an

least two weeks follow

sion. In one interventio

tate patients’ participat

and decisions, question 

lists were well receive

reduced the level of an

the impact on the proc

sion-making was uncle

Settings for end-of-lif

The decision about the 

which end-of-life care 

166 
regarding the setting of end-of-life 

care, no studies have specifically 

addressed patient-clinician discussions about this topic. 

Advance directives 

Discussions about advance directives and substituted judgment 

about life-sustaining treatments 

should the patient lose the capacity 

to decide are contextualized by 

numerous sociological, psychological, legal, and ethical factors that 

are beyond the scope of this 

monograph. A self-determination 

model suggests that patients would 

want to use a principle of substituted judgment if they lose capacity, but this application of selfdetermination theory is increasingly being called into question.68 

There is empirical support that 

some patients (especially those 

who are older and sicker) are more 

comfortable delegating such decisions to family members and, 

under certain circumstances, letting surrogates override the 

patient’s own living will, depending on the context, recognizing 

that decisions are unstable over 

time.69,70 However, patients and 

their surrogates do not always 

make the same decisions when 

presented with hypothetical scenarios, nor are their advance care 

decisions completely stable over 

time. Yet, most patients still favor 

the decision-making authority of 

should be aware that patients’ ability to maintain a positive attitude 

is associated with increased survival and quality of life74 and that 

clinician recommendations can 

have psychological benefit for 

patients.75 Thus, presenting “just 

the facts” and expecting patients to 

take a primary decision-making 

role may not always be good for 

the patient’s health and well-being. 

Clinicians also have an important 

role in fostering positive attitudes 

and hope. They must often share 

responsibility for the decision with 

the patient and his or her family. 

One qualitative study emphasized 

the importance of determining 

whether the patient was an 

“activist” or a “delegator” before 

approaching discussions of 

advance directives.76 

The SUPPORT study was an 

important effort to promote discussions about end-of-life issues with 

seriously ill patients, some of 

whom had cancer. 77 However, the 

intervention—nurses informing 

teams about the patient’s values 

and prognosis—produced no 

changes in the use of advance 

directives, and care was no more 

concordant with patients’ values in 

the intervention group than in the 

control group.77 Even when discussions occurred, physician understanding of patients’ preferences 

were no better than when such discussions were reported not to have 

ences and surrogate decisio

ing but rarely addressed val

uncertainty. The researchers 

that most patients had misco

tions about the process and 

comes of cardiopulmonary 

tation. Although physicians 

rately predicted who the pat

would choose as a health ca

proxy 89% of the time, they 

unable to predict patients’ p

ences in 18 of 20 scenarios 

ing advance directives.79,80 O

knowledge about the conten

process of discussions abou

advance directives or do-no

citate orders with patients w

incurable cancer is limited. 

Furthermore, traditional mo

decision-making consider o

parties—the patient and the 

cian. However, families are 

mally involved in end-of-lif

sions, even in Anglo-Saxon 

tures, and more so in Asian

African, Mediterranean, and 

American cultures.81,82 Mode

communicating about end-o

issues have only begun to ta

family into account,83 and fa

interventions have not been 

empirically. 

Assisted suicide 

Assisted suicide and euthan

are also issues that arise dur

end-of-life phase. Even in lo

tions where assisted death i

gal, 12% of physicians repo

ing received explicit reques
suicide,86-88 their implementation 

has been studied with only qualitative interview techniques with clinicians89 and patient/family units.90 

Clinicians’ reports suggested that 

their initial responses to such 

requests are to ask the patient to 

clarify his or her reasons for the 

request, address the physical 

symptoms and psychological 

issues underlying the request, and 

identify and treat depression. 

However, clinicians’ greatest difficulty in responding to such 

requests and reaching a decision 

was related to existential suffering—patients’ loss of meaning, 

loss of role function, and feeling 

that they are burdensome to their 

families. Patients and their families reported on clinicians’ qualities necessary to facilitate these 

discussions, including openness to 

discussing assisted suicide, expertise dealing with the dying process, 

and maintaining a trusting relationship despite potential disagreements.90 These interactions, however, have not been recorded or 

observed directly, nor is there 

information about how clinical 

communication affects suffering 

and quality of life in these settings. 

Implications for future study 

Little known about the content and 

process of discussions between clinicians, patients at the end of life, 

and their families regarding treat

more than in other domains of 

cancer communication, the 

patient’s implicit model of selfdetermination, desire for autonomy 

versus delegation to family or 

friends, desire for physician recommendations and willingness to 

confront difficult circumstances, 

all of which exist with an undercurrent of prognostic uncertainty. 

Addressing patients’ emotions and 

existential suffering appears to be 

a necessary first step in reaching 

decisions regarding end-of-life care. 

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(79) Tulsky JA, Fischer GS, Rose MR, 

Arnold RM. Opening the black box: how 

do physicians communicate about advance 

directives? Ann Intern Med. 1998;129:441­

449. 

(80) Fischer GS, Tulsky JA, Rose MR, 

Siminoff LA, Arnold RM. Patient knowledge and physician predictions of treatment preferences after discussion of 

advance directives. J Gen Intern Med. 

1998;13:447-454. 

(81) Carrese JA, Rhodes LA. Western 

bioethics on the Navajo reservation. 

Benefit or harm? JAMA. 1995;274:826­

829. 

(82) Blackhall LJ, Murphy ST, Frank G, 

Michel V, Azen S. Ethnicity and attitudes 

toward patient autonomy. JAMA. 

1995;274:820-825. 

(83) Lang F, Quill T. Making decisions 

with families at the end of life. Am Fam 

Physician. 2004;70:719-723. 

(84) Back AL, Wallace JI, Starks HE, 

Pearlman RA. Physician-assisted suicide 

and euthanasia in Washington State. 

Patient requests and physician responses. 

JAMA. 1996;275:919-925. 

(86) Quill TE. Opening the blac

physicians’ inner responses to pati

requests for physician-assisted dea

Palliat Med. 2004;7:469-471. 

(87) Emanuel LL. Facing reque

physician-assisted suicide: toward 

cal and principled clinical skill set

1998;280:643-647. 

(88) Tulsky JA, Ciampa R, Ros

Responding to legal requests for p

assisted suicide. University of 

Pennsylvania Center for Bioethics 

Suicide Consensus Panel. Ann Inte

2000;132:494-499. 

(89) Kohlwes RJ, Koepsell TD

LA, Pearlman RA. Physicians’ res

to patients’ requests for physician-

suicide. Arch Intern Med. 2001;16

663. 

(90) Back AL, Starks H, Hsu C

Clinician-patient interactions abou

requests for physician-assisted sui

patient and family view. Arch Inte

2002;162:1257-1265. 
172
 
E

ncounters between clinicians 

and patients with cancer are 

complex. Such experiences 

are often emotion-laden, and the 

participants must discuss a complex array of diagnostic and treatment information. As a result, 

many clinicians have expressed the 

need for communication skills 

training to help them, their 

patients, and their patients’ families have more positive, productive 

encounters.1,2 Research to date has 

focused on three issues: communication skills training for clinicians 

(mostly for physicians and nurses), 

cultural competency training, and 

communication skills training for 

patients. Very little research has 

been conducted to determine how 

interventions focused on changing 

the structure of clinical practices 

and health care systems may affect 

communication and related outcomes. 

E.1 Communication Skills
 

Training for Clinicians
 

In cancer care, clinicians have a
 

number of communication tasks
 

that must be accomplished skillfully. According to Beckman 


and Frankel,3 these include the
 

following:
 

• Delivering bad news 

• Helping patients make truly 

informed choices 

• Effectively working with 


families 


• Facilitating the transition to 

palliative care 

• Ensuring that end-of-life care 

honors the patient’s requests 

• Working with grief 

Clinicians generally feel more 

comfortable discussing diagnosis 

and treatment than emotional and 

psychological issues.4 Even the 

management of information is 

challenging; patients with cancer 

typically report that they want to 

know all the available information 

about their type of cancer and its 

treatment5 yet are often overwhelmed by the sheer amount of 

information provided by clinicians, 

the mass media, and the Internet.6 

Various communication training 

programs for clinicians have been 

described and evaluated in several 

studies. Typically, clinicians report 

that they find these programs to be 

satisfying and meaningful and to 

result in more confidence in handling difficult communication 

issues with patients who have cancer.7-11 For example, in one study, 

before beginning a communication 

skills training program, oncologists expressed difficulty with a 

number of communication issues, 

such as giving complex information, obtaining informed consent, 

and handling cultural differences. 

Three months after the three-day 
Other studies have focused on the 

effectiveness of interventions to 

teach clinicians emotion-management skills, such as expressing 

empathy, responding to patient 

cues, and handling psychological 

distress.14 A recent review of randomized controlled trials and controlled before and after studies 

designed to assess the effectiveness of communication skill programs demonstrated that physicians and nurses improved on 

several patient-centered skills, 

including communicating empathy, using open-ended questions, 

and providing appropriate responsiveness to patient cues. These 

improvements were sustained 

over several weeks.15 With the 

proper training, improvements in 

communication skills can be sustained over longer periods. In one 

study, 12 months following a 

physician intervention, there was 

no noticeable attrition in physicians’ improvement in the use of 

open-ended questions and responsiveness to patient cues (although 

there was a decline in empathy).16 

The physicians also interrupted 

less and made more of an effort to 

summarize information for 

patients, skills that had not been 

observed immediately following 

training. In a Japanese study, 

oncologists’ confidence in communicating with patients 

increased significantly after train

patient-centered communication 

in cancer care, it may have the 

unintended consequence of 

adding to the clinician’s stress. 

Other interventions have specifically focused on the effects of 

training to uncover and discuss 

emotional distress in patients with 

cancer. In one study, nurses trained 

in ways to discuss and handle 

patients’ emotions were indeed 

able to elicit more affective communication from patients than 

were untrained nurses.18 In another 

study, nurses trained to address the 

emotional content of medical 

encounters used more words related to emotions immediately and 

three months after training compared with a control group.19 

Communication interventions for 

clinicians have also been linked to 

patients’ perceptions of quality of 

care. Patients of trained physicians 

reported that they understood their 

disease better,20 felt less depressed, 

and believed they were more in 

control than did patients whose 

physicians did not have training.21 

In the most recent study, physicians who participated in an intensive training program (a series of 

six three-hour workshops) used 

more open-ended questions and 

were more effective at eliciting 

and clarifying the psychological 

concerns of simulated patients 

than were physicians who participated in a less intensive training 

Although most studies 

demonstrated improve

cation skills following 

few have had negative 

training program desig

increase physicians’ a

detect patients’ distres

significant differences 

those who participated 

workshops and the co

Instead, physicians’ ab

assess patients’ distres

tively associated with 

education level and se

distress both before an

intervention. A study 

indicated that an inter

designed to help detec

ical difficulties in pati

cancer was successful 

ing the detection of di

but few of the patients 

referred to psychologi

Unfortunately, there w

low-up on patient hea

comes.24 In another stu

satisfaction associated 

physician communica

program was attenuate

of practical problems, 

waiting too long to se

cian.25 These studies p

possibility that system 

zational barriers can h

effectiveness of comm

training programs. 

It is also worth noting 

studies reviewed here 

focused on skills train

cer consultations in ge

174 
patients with limited literacy.31 

The most effective training programs for clinicians are those 

that32,33 

• Are carried out over a long 

period of time 

• Use multiple pedagogical 

methods 

• Allow for rehearsal 

• Provide timely feedback 

• Allow clinicians to work in 

groups with skilled facilitators 

Moreover, because clinicians 

develop routines for interacting 

with patients, communication 

training interventions should be 

introduced early in the medical 

school curriculum. Such interventions have been successful. In one 

program for students in which 

patients with cancer were enlisted 

as part of an educational program, 

students in the intervention group 

valued listening, trust, and showing concern for patients to a 

greater degree than did students 

who did not participate in the program. 34 Although three to fiveday training courses can contribute to behavior and attitude 

change in students, these workshops may not be as effective as 

incorporating communication 

skills development throughout the 

medical and nursing curriculum. 

the construct has evolved beyond 

an awareness of language barriers 

and the ways cultures differ to the 

implementation of patient-centered 

communication (e.g., empathy and 

responsiveness to patients’ values 

and preferences).35,36 According to 

Paasche-Orlow,37 the essential 

principles of cultural competence 

are the following: 

• Acknowledgment of the 

importance of culture in people’s daily lives 

• Acceptance and respect for 

these differences 

• Minimization of the negative 

effects of cultural differences 

Clinicians and patients must adhere 

to these principles in order to communicate effectively. Cultural competency is important at all points 

across the cancer care continuum—during cancer screening, the 

informed consent process, decision-making about treatment after 

diagnosis, and palliative care.38 

Despite the need for programs in 

cultural competency,39-41 very few 

of these programs have been developed or evaluated to date. 

The challenges facing cultural 

competence training are manifold. 

Most medical students are not 

highly culturally competent with 

respect to understanding health 

disparities, stereotyping, and cultural differences in communication 

styles.42 When patients and clini

training indicated that these 

grams generally increase cli

cians’ knowledge of cultura

and their communication sk

when interacting with diver

patients and that patients re

greater satisfaction with suc

cians.44 However, there has 

little indication to date that 

education contributes to gre

patient adherence and impro

health outcomes. We suspec

like communication skills tr

the most effective cultural c

tency education will be prog

that provide intensive educa

before, during, and after cli

training45 and that involve m

pedagogical methods (role-p

ing, feedback, simulated pa

group discussion). Moreove

ing culturally competent cli

is but one requirement for a 

ally responsive health care s

Patients and clinicians also 

be supported with staff and 

tioners who reflect the com

served, with linguistically a

turally appropriate health ed

tion materials, and with acc

interpreters when needed.46 

E.3 Communication Skills 

Training for Patients 

Patients, too, play an impor

role in the success of clinica

encounters in cancer setting

key premise underlying pati

“activation” or communicat
“patient activation” interventions 

are those that 47-49 

• Promote the legitimacy of the 

patient’s participation in care 

• Provide information about the 

patient’s health condition and 

treatment options 

• Provide specific communication strategies and behaviors 

for patients to use in their 

interactions with clinicians 

• Deliver the intervention in a 

timely fashion so that the 

patient has an opportunity to 

act on behavioral intentions 

resulting from the program 

Patients in gynecology clinics who 

were advised to write down specific questions and take the list into 

the consultation reported that they 

had asked more of the questions 

they wanted to, felt more in control, and were more satisfied with 

the information they had 

received.50 With another intervention, patients were explicitly 

encouraged to be active information seekers and were advised to 

write down specific questions and 

concerns before the visit with their 

physician.51 Patients who received 

the intervention asked significantly 

more questions and had better 

recall of the information provided 

by physicians than did patients not 

receiving the intervention. It has 

been shown that having patients 

interventions may depend in part 

on providing patients with specific 

skills and goals for the encounter.53-55 

Simply encouraging patients to be 

more involved may not sufficiently 

help them overcome barriers to 

participation. In addition, interventions are more effective if the 

physician has a positive attitude 

toward patient participation.56 

There is a large body of literature 

on the use of decision aids to 

inform patients about their type of 

disease and help them identify 

their treatment preferences,57 and 

several studies have involved the 

evaluation of decision aids 

designed to enhance patient communication and participation in 

cancer consultations. The findings 

of many studies of aids to facilitate 

the involvement of patients with 

cancer in the decision-making 

process have demonstrated that 

patients receiving these interventions had greater knowledge about 

the surgical treatment of breast 

cancer, assumed a more active role 

in the process, had less decisional 

conflict, and were more satisfied 

with the decision-making 

process.58,59 In contrast, some studies have indicated less success 

with interventions designed to help 

patients in the decision-making 

process. For example, Davison and 

Degner60 reported that, paradoxically, women with breast cancer 

who used computer-assisted education designed to promote their 

women in the interven

were encouraged to us

mation and decision p

profiles generated by t

program at their clinic 

ments. In general, the 

women in both groups 

their preferred roles in 

making, but a higher p

women in the interven

reported playing a mo

role than expected. On

moderating factor not 

this study was the way 

physicians communica

patients. In another stu

with newly diagnosed 

breast cancer61 either r

multimedia program o

tional brochure; wome

groups achieved signif

in knowledge about tre

the two groups did not 

respect to their rates o

tion in decision-makin

with question prompt 

degree to which patien

questions, expressed c

offered opinions was r

their age, education, a

to which physicians fa

their involvement. Thi

highlights the fact that 

cian’s attitudes toward 

vation and behavior in 

tation likely moderate 

of patient activation in

and that the effectiven

interventions, in part, 

physician endorsemen

176 
increasing patients’ informationseeking and decision-making 

behavior. Yet, in cancer care, how 

patients manage their emotions 

and personal meaning of illness 

are also important. For example, 

in palliative care, patients’ participation may be less focused on 

medical information and more 

focused on discussing their experiences and life circumstances.63 

Even when interventions are 

designed to facilitate patients’ 

information-gathering and decision-making behavior, patients 

may be more interested in sharing 

their experiences with others 

rather than learning specific communication skills. In short, these 

results suggest that interventions 

designed to foster patient participation in cancer consultations 

should also focus on facilitating 

patients’ emotional processing of 

the disease, particularly when it is 

incurable. 

In summary, the research on activation and communication skills 

training for patients highlights the 

importance of providing specific 

communication strategies (e.g., 

through role models, prompt 

sheets, and writing down questions and concerns) when interacting with clinicians. Health 

information and encouragement 

also facilitate patient participation, but, to be most effective, 

patient activation interventions 

the consultation is particularly 

effective because patients can use 

these communication strategies 

while they are salient and relevant. It is important to note that, 

when programs to enhance patient 

communication are well designed, 

they can be effective in a variety 

of media, including pamphlets or 

booklets,50,55 prompt sheets,59 

video recordings,52 multimedia 

programs,61 coaching sessions,64-66 

or diaries.67 However, it is not 

known how long the effects of the 

intervention persist or how to 

simultaneously augment physician endorsement and facilitation 

of patients’ active involvement so 

that patients’ values and experiences are thoroughly discussed 

and incorporated into actual 

decisions. 

E.4 Interventions at the Team, 

Practice, and Health Care 

Systems Levels to Improve 

Communication between 

Patients with Cancer and 

Clinicians 

There are very few studies of the 

effect of changes at the team, practice, and health care systems levels 

on communication between 

patients with cancer and clinicians. 

Interventions at the team level 

Patients normally encounter multiple clinicians during the cancer 

researchers have called for 

improved communication w

health care teams,71 but ther

few interventions overall an

fewer in cancer contexts. 

Interventions in intensive ca

tings have had a positive im

on communication and lead

within health care teams,68 h

er, the impact on patients is 

unknown. Interventions to p

structured written communi

between primary care physi

and oncologists70 and betwe

eral practitioners and oncolo

nurses 72 appeared to facilita

information transfer, but a s

quent study showed that a s

intervention had little impac

patient health care and infor

tion-seeking behavior.73 The 

ings of one cohort study sug

that palliative care teams re

better patient insight into th

nesses than standard care,74 

results of a study of a team-

ing intervention indicated th

interventions to improve tea

functioning may not be effe

there is understaffing.75 Pati

held medical records have s

promise in improving comm

tion among team members a

facilitating patient understan

but effects on communicatio

between clinicians and patie

have not been reported. A s

care intervention to promote 

work between general pract

and oncologists appear to in
Interventions at the practice level 

In a series of studies, Stange and 

colleagues78-82 demonstrated that 

use of individualized interventions 

at the practice level could increase 

rates of cancer prevention and 

screening. These interventions 

involved research personnel 

trained in ethnographic and survey 

methods who would spend from 

several days to several weeks 

observing the organization, patient 

flow, and teamwork in primary 

care practices. These personnel 

would then meet regularly with the 

entire practice to propose changes 

in the structure of the practices tailored to the particular problems 

encountered. However, the impact 

of such interventions on communication between clinicians and 

patients, and the degree to which 

the effects of these interventions 

are mediated by changes in communication, is unknown. 

Interventions at the health care 

systems level 

One randomized trial identified 

problems in the physical layout of a 

cancer outpatient clinic and developed an intervention to make 

changes in that layout and to educate staff on communication techniques.83 Patients in the intervention 

group were more likely to report 

higher satisfaction with communication, better privacy, fewer interruptions, clearer language, suffi

Systems interventions to facilitate 

transfer of information between 

patients and physicians include 

care diaries in which patients and 

all members of the health care 

team could share information,67 

patient-held medical records,76 and 

direct access by patients to electronic medical records. In one 

study, patients expressed satisfaction with the care diary approach,67 

but no other randomized trials 

have been conducted to assess the 

effects of these approaches on 

communication, quality of life, 

and other outcomes. These interventions present compelling areas 

for future research. 

E.5 Implications for Future Study 

The evidence to date suggests that 

communication training interventions are generally effective for 

enhancing clinicians’ patient-centered behaviors and patients’ information-seeking and decision-making skills. In cancer care settings, 

more attention should be directed 

at developing programs designed 

to enhance clinicians’ cultural 

competency and to help patients 

discuss and manage their emotions 

and feelings. Despite the promising results of these interventions, 

such programs have not been 

implemented system-wide within 

cancer care settings. Moreover, 

there is a paucity of research on 

how changes in the structure of 

improve cancer care c

Interventions generally 

involved family memb

friends, nor have the e

intervention on caregiv

being been assessed. I

have very rarely comb

cian and patient trainin

evidence that lack of p

endorsement can unde

patient interventions th

wise successful. Very 

ventions incorporate m

reinforcing the effects 

vention over time. The

technologies hold muc

for improving patient-

communication.84 

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200
 
Program Planning 

Health 

Communication and 

Informatics Research 

Branch 

Outcomes Research 

Branch 

Cancer.gov 

ClinicalTrials.gov 

Cancer Control 

P.L.A.N.E.T. (Plan, Link, 

Act, Network with 

Evidence-based tools) 

Designing Print 

Materials: A 

Communications 

Guide for Breast 

Cancer Screening 

http://cancercontrol. 

cancer.gov/hcirb 

http://outcomes. 

cancer.gov/ 

http://www.cancer. 

gov 

http://www.clinical 

trials.gov/ 

http://cancercontrolplanet.cancer.gov/ 

http://appliedresearch 

.cancer.gov/icsn/ 

publications/guide. 

html 

NCI branch that supports basic and translational research 

across the cancer 

continuum on communication practices 

and infrastructure 

NCI branch that supports research to 

measure, evaluate, 

and improve the outcomes of cancer care 

Main NCI Web page 

with links to information, tools, and 

resources on cancer 

Searchable database 

of NIH and industrysponsored clinical 

trials 

Portal providing 

access to data and 

research-tested 

resources to design, 

implement, and 

evaluate evidencebased cancer control 

programs 

Document developed 

to improve the quality of information 

provided by breast 

cancer screening programs to consumers 
Communications 

Programs Work 

gov/pinkbook cation pro

planning 

Research Tested 

Intervention 

Programs 

http://rtips.cancer. 

gov/rtips/index.do 

Database 

grams and 

that can b

for individ

Risk Communication http://riskfactor.cancer.gov/publications Cancer risk 

resources f

and resea

Understanding 

Cancer Series 

http://www.cancer. 

gov/cancertopics/ 

understandingcancer 

Tutorials o

topics; som

available 

Additional Tools for Researchers 

Behavioral Risk http://www.cdc.gov/ Annual te

Factor Surveillance brfss/ health sur

System (BRFSS) ed in 1984 

health con

and risk b

the United 

Computer Retrieval http://crisp.cit.nih.gov Searchabl

of Information on of federal

Scientific Projects biomedica

(CRISP) projects 

Current Population http://www.census. Monthly s

Survey gov/cps/ household

ed by the 

the Censu

Bureau of 

Statistics 

202 
National Health http://www.cdc.gov/ Source of informaInterview Survey nchs/nhis.htm tion on the health of 

the civilian noninstitutionalized population of the United 

States; one of the 

data collection programs of the National 

Center for Health 

Statistics 

Surveillance, http://seer.cancer.gov Source of informaEpidemiology, and tion on cancer inciEnd Results (SEER) dence and survival in 

Program the United States 

SEER-Medicare http://healthser- Provides populationvices.cancer.gov/seer­ based data on indimedicare/overview/ viduals from the 

Medicare population 

with cancer, identified through the 

linkage of 

Surveillance, 

Epidemiology and 

End Results (SEER) 

data and Medicare 

claims data 


NIH Publication No. 07-6225
 

Printed October 2007