Uncertain Futures

This book examines children and young people’s attempts to participate in conversations about their own treatment throughout uncertain cancer trajectories, including the events leading up to diagnosis, treatment, remission, relapse, and cure or death.

• Clearly and compellingly written, Clemente relies on a new multi-layered method to identify six cancer communication strategies
• Illustrates that communication is central to how children, parents, and healthcare professionals constitute, influence, and make sense of the social worlds they inhabit—or that they want to inhabit
• Provides ethnographic case studies of childhood cancer patients in Spain, using children's own words
• Examines the challenges of how to talk to and how to encourage patients' involvement in reatment discussions
• In his critique of the “telling” versus “not telling” debates, Clemente argues that communication should be adjusted to the children’s own needs, and that children's own questions can indicate how much or little they want to be involved

Uncertain Futures is the winner of the 15th Annual Modest Reixach Prize.

Series Preface ix

Acknowledgments xii

Preface xiv

1. Children: Contributions to Communication and Illness 1

Alternatives to Speaking 5

Disclosure as a Dynamic and Heterogeneous Process 7

Disclosure to Children with Cancer 10

Problematizing Participation 13

Uncertainty and the Practice of Optimism 21

Multiple Uncertainties 21

Hierarchically Organized Uncertainties 23

Variable Uncertainties 23

Practicing Hope and Optimism 25

Ethnography and Conversation Analysis 26

Plan of the Book 31

2. A Linguistic Anthropologist in a Pediatric Cancer Unit 33

Culture and Disclosure Practices in Catalonia 34

Fieldwork with Children 38

Contexts of Children’s Questions 42

Investigating Avoidance 44

Multiple Ways of Talking about Cancer 47

3. Living and Dealing with Cancer 49

Focusing on Treatment 51

Guessing 55

Estar baixet (Having Low Blood Cell Counts) 56

Les llagues (Mouth Sores) 57

La febre (Fever and Infections) 58

Being Together 60

Acompanyar (Being at the Patient’s Side) 61

Menjar (Eating) 63

Fer una visita (Visiting) 64

Talking Privately 67

Uncertainties of Treatment 71

4. Co]constructing Uncertainty 74

Questions and Answers 76

Uncertainty and the Topic of Questions 79

Contingent Answers 80

Contingent Questions 86

Uncertainty and the Action of Questions 88

Answers that Lead to Subsequent Actions 90

Avoiding Answers and Avoiding Silence 93

Stepping into the Uncertain Future One Turn at a Time 100

5. Engaging in Communication at Catalonia Hospital 102

Learning the Diagnosis 103

L’entrevista (The Treatment Interview) 109

“And When Will I Be Completely Cured?” 111

Six Communication Strategies 127

6. Patient Pressure and Medical Authority 129

Everyday Life in Treatment 130

“How Many Chemos Do I Have Left?” 133

Seeking Answers Without Challenging Medical Authority 151

7. The Limits of Optimism at the End of Treatment 153

Remission 154

Relapse 159

Negotiating Death 161

“Is the Day of the Autotransplant Going to Be Delayed?” 168

Optimistic Collusion 178

8. Conclusion 180

Appendix A: Profiles of Patients 189

Children (ages 3-6) 189

Young people (ages 11-18) 190

Appendix B: Transcription Conventions 193

References 197

Index 214

"...opens up broader margins of reflection about how medical diagnoses, and in general medical communication, are delivered and negotiated and provides the reader with extensive references with which the theoretical discussion is constantly confronted and challenged...Clemente is surely paving the way toward a more fertile and effective collaboration between medical and linguistic anthropology..." - Letizia Bonanno, AAA Book Forum, 2016 Ignasi Clemente is Assistant Professor in the Department of Anthropology at Hunter College, CUNY, USA. His research interests include sociocultural and communicative aspects of pain and suffering, childhood studies, and embodied communication. His research on chronically ill children has been published in journals including Social Science and Medicine, Sociology of Health and Illness, and Communication and Medicine. Among others, he has contributed to the Oxford Textbook of Paediatric Pain (2013), the Handbook of Conversation Analysis (Wiley-Blackwell, 2013), Healthcare Settings: Policy, Participation and New Technologies (Wiley-Blackwell, 2010), and the Blackwell Guide to Research Methods in Bilingualism (Blackwell, 2008).

This book examines children and young people’s attempts to participate in conversations about their own treatment throughout uncertain cancer trajectories, including the events leading up to diagnosis, treatment, remission, relapse, and cure or death. Focusing on one hospital in Barcelona, Spain, Clemente examines the cat-and-mouse game between children and young people who persistently ask questions, and adults who attempt to protect the children from potentially distressing news.

Doctors and parents use six strategies that are often contradictory - including deception, complete non-disclosure, and partial disclosure - to regulate communication according to the changing circumstances of a specific child’s cancer trajectory. A fundamental objective of this communication regulation is to prevent the multiple uncertainties associated with cancer and its treatment from becoming the central focus of talk and social life. Clemente also highlights that containing these uncertainties requires an institutional mandate to practice hope and optimism, to hide negative emotions, and to curtail talk about the future.

Clearly and compellingly written, Clemente provides new models for examining cancer communication in this fascinating study that provides ethnographic case studies of childhood cancer patients in Spain, using children’s own words.

“Clemente opens our minds and hearts to the everyday lives of children with cancer, their parents and clinicians as they interact with one another, indeed as they carry on, in the face of numerous uncertainties.”

Myra Bluebond-Langner, University College, London and Rutgers University

"Ignasi Clemente’s book deserves to be read by all who are concerned with the state of health care communication, whether involving cancer or other serious illness, patients who are children or adults, and communications in hospitals, clinics or other medical settings."

Douglas Maynard, University of Wisconsin

“Uncertain Futures insightfully explores the delicate balance between silence and discussion, and sheds light on how the illness extends beyond the patient as parents rearrange their lives to love and care for their children in extremely difficult circumstances.”

Marjorie Goodwin, University of California, Los Angeles