Thomas W LeBlanc1,2, Nick Bloom3, Steven P Wolf4, Sarah G Lowman5, Kathryn I Pollak6,7, Karen E Steinhauser8,9,10, Dan Ariely11, James A Tulsky12,13. 1. Duke Cancer Institute, Box 2715, DUMC, Durham, NC, 27710, USA. thomas.leblanc@duke.edu. 2. Division of Hematological Malignancies and Cellular Therapy, Department of Medicine, Duke University School of Medicine, Durham, NC, USA. thomas.leblanc@duke.edu. 3. Department of Sociology, Duke University, Durham, NC, USA. 4. Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, NC, USA. 5. School of Dentistry, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 6. Duke Cancer Institute, Box 2715, DUMC, Durham, NC, 27710, USA. 7. Department of Community and Family Medicine, Duke University School of Medicine, Durham, NC, USA. 8. Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, NC, USA. 9. Department of Medicine, Division of General Internal Medicine, Palliative Care Section, Duke University School of Medicine, Durham, NC, USA. 10. Center for the Study of Aging and Human Development, Duke University, Durham, NC, USA. 11. James B. Duke Professor of Psychology and Behavioral Economics, Duke University, Durham, NC, USA. 12. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA. 13. Division of Palliative Medicine, Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.
Abstract
PURPOSE: The research on cancer treatment decision-making focuses on dyads; the full "triad" of patients, oncologists, and caregivers remains largely unstudied. We investigated how all members of this triad perceive and experience decisions related to treatment for advanced cancer. METHODS: At an academic cancer center, we enrolled adult patients with advanced gastrointestinal or hematological malignancies, their caregivers, and their oncologists. Triad members completed a semi-structured qualitative interview and a survey measuring decisional conflict and perceived influence of the other triad members on treatment decisions. RESULTS: Seventeen patients, 14 caregivers, and 10 oncologists completed the study. Patients and caregivers reported little decisional regret and voiced high satisfaction with their decisions, but levels of decisional conflict were high. We found sizeable disagreement among triad members' perceptions and preferences. For example, patients and oncologists disagreed about the caregiver's influence on the decision 56% of the time. In addition, many patients and caregivers preferred to defer to their oncologist about treatment decisions, felt like no true decision existed, and disagreed with their oncologist about how many treatment options had been presented. CONCLUSIONS: Patients, caregivers, and oncologists have discordant perceptions of the cancer treatment decision-making process, and bring different preferences about how they want to make decisions. These data suggest that oncologists should assess patients' and caregivers' decisional preferences, explicitly signal that a decision needs to be made whenever approaching an important crossroads in treatment and ensure that patients and caregivers understand the full range of presented options.
PURPOSE: The research on cancer treatment decision-making focuses on dyads; the full "triad" of patients, oncologists, and caregivers remains largely unstudied. We investigated how all members of this triad perceive and experience decisions related to treatment for advanced cancer. METHODS: At an academic cancer center, we enrolled adult patients with advanced gastrointestinal or hematological malignancies, their caregivers, and their oncologists. Triad members completed a semi-structured qualitative interview and a survey measuring decisional conflict and perceived influence of the other triad members on treatment decisions. RESULTS: Seventeen patients, 14 caregivers, and 10 oncologists completed the study. Patients and caregivers reported little decisional regret and voiced high satisfaction with their decisions, but levels of decisional conflict were high. We found sizeable disagreement among triad members' perceptions and preferences. For example, patients and oncologists disagreed about the caregiver's influence on the decision 56% of the time. In addition, many patients and caregivers preferred to defer to their oncologist about treatment decisions, felt like no true decision existed, and disagreed with their oncologist about how many treatment options had been presented. CONCLUSIONS:Patients, caregivers, and oncologists have discordant perceptions of the cancer treatment decision-making process, and bring different preferences about how they want to make decisions. These data suggest that oncologists should assess patients' and caregivers' decisional preferences, explicitly signal that a decision needs to be made whenever approaching an important crossroads in treatment and ensure that patients and caregivers understand the full range of presented options.
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