How families in Japan view the disclosure of terminal illness: a study of iatrogenic HIV infection

Abstract

Physicians in Japan typically do not disclose diagnoses of terminal illnesses to patients, in deference to the wishes of family members. Nonetheless, some evidence indicates that relatives of patients with iatrogenic HIV infection would prefer patient disclosure. We collected survey data from 314 family members in 225 households of hemophiliac patients who died from illnesses related to iatrogenic HIV infection in order to examine current attitudes toward patient disclosure in Japan. Family members reported that the diagnosis of iatrogenic HIV infection was disclosed to the patient by the primary physician in 32.8% of cases, by the family in 8.3% of cases, and not disclosed in 26.4% of cases. The majority of families indicated that the timing of the physician's disclosure occurred too late. Multivariate analysis indicated that families wished that patients had been informed of the diagnosis, despite the stigma associated with HIV in Japan. Furthermore, many families blamed the physician for the infection and fatality in those cases in which the physician did not convey feelings of regret. These results have important clinical ramifications to the practice of disclosing terminal diagnoses in Japan.

Keywords:

• HIV/AIDS
• disclosure
• bereavement
• iatrogenic disease
• Japan

Acknowledgements

This work was partly supported by the Grant-in-Aid for Young Scientists (B), The Ministry of Education, Culture, Sports, Science and Technology, Japan. The authors thank to anonymous reviewers who provided very useful comments on a draft of the report, and to Katsumi Ohira, Jugo Hanai, and the other members of the Committee to Investigate the Lives of Bereaved Families of Iatrogenically Infected HIV Patients who participated in this project, for their cooperation and feedback. Finally, I wish to express my heartfelt appreciation to all of the families who participated in the surveys.