Dong Wook Shin1,2, Juhee Cho3,4,5, Debra L Roter5, So Young Kim6,7, Hyung Kook Yang6, Keeho Park6, Hyung Jin Kim8, Hee-Young Shin9, Tae Gyun Kwon10,11, Jong Hyock Park6,7. 1. Department of Family Medicine and Health Promotion Center, Seoul National University Hospital, Seoul, Korea. 2. Cancer Survivorship Clinic, Seoul National University Cancer Hospital, Seoul, Korea. 3. Cancer Education Center, Samsung Comprehensive Cancer Center, School of Medicine and SAHIST, Sungkyunkwan University School of Medicine, Seoul, Korea. 4. Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA. 5. Department of Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA. 6. National Cancer Control Institute, National Cancer Center, Goyang, Korea. 7. College of Medicine/Graduate School of Health Science Business Convergence, Chungbuk National University, Cheongju, Korea. 8. Department of Urology, Chonbuk National University Medical School, Jeonju, Korea. 9. Department of Biomedical Science, Chonnam National University Medical School, Gwangju, Korea. 10. Department of Urology, Kyungpook National University School of Medicine, Daegu, Korea. 11. Joint Institute for Regenerative Medicine, Kyungpook National University Hospital, Daegu, Korea.
Abstract
BACKGROUND: To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. PATIENTS AND METHODS: A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. RESULTS: Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P < .003); oncologists were more likely to skew their responses toward patient rather than family decisional control than caregivers (P < .001). Most respondents thought that family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P < .002). CONCLUSIONS: Patients, family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision.
BACKGROUND: To investigate how cancerpatients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. PATIENTS AND METHODS: A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. RESULTS: Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P < .003); oncologists were more likely to skew their responses toward patient rather than family decisional control than caregivers (P < .001). Most respondents thought that family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P < .002). CONCLUSIONS:Patients, family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision.
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