PATIENT-CENTERED COMMUNICATION IN CANCER CARE

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health

National Cancer Institute

PATIENT-CENTERED

COMMUNICATION

IN CANCER CARE

Promoting Healing and Reducing Suffering

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

This monograph on Patient-Centered Communication in Cancer Care was written under contract from the Outcomes Research Branch of the Applied Research Program in the Division of Cancer Control and Population Sciences, National Cancer Institute, NIH. Project Officer for this contract was Neeraj K. Arora, PhD (e-mail: aroran@mail.).

The primary authors of the monograph are

Ronald M. Epstein, MD Professor of Family Medicine and Psychiatry; Associate Dean for Educational Evaluation and Research; and Director, Rochester Center to Improve Communication in Health Care, University of Rochester School of Medicine and Dentistry (e-mail: ronald_epstein@urmc.rochester.edu).

And

Richard L. Street, Jr, PhD Professor and Head, Department of Communication, Texas A&M University; and Chief, Division of Health Communication 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: . 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 Suffering. National Cancer Institute, NIH Publication No. 07-6225. Bethesda, MD, 2007.

Patient-Centered Communication in Cancer Care Contents

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

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Patient-Centered Communication in Cancer Care

Chapter 5. Methodological Challenges in Studying Clinical Communication in Cancer Care . . . . . . .89 5.1 Measurement of Patient-Centered Communication

5.2 Mediators between Communication and Health Outcomes

5.3 Moderators of the Link between Communication and Health Outcomes

5.4 Study Design

5.5 Conclusion

Chapter 6. Summary, Conclusions, and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .99 6.1 Summary of Chapters 1 through 5: Basic Principles, Functions, Mediators and

Moderators, and Methodological Challenges

6.2 Gaps in the Literature and Important Areas for Future Research

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 . . . . . . . . . . . . . . . . . .131

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 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .137 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 . . . . . . .155 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 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .161 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 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .173

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 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .183

vii

Appendix G. Observation-based Instruments for Coding and Rating

Patient-Clinician Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .195

NCI's Communication Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .201

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