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Practices and evaluations of prognostic disclosure for Japanese cancer patients and their families from the family's point of view

Published online by Cambridge University Press:  23 August 2012

Saran Yoshida ,
Mariko Shiozaki ,
Makiko Sanjo ,
Tatsuya Morita ,
Kei Hirai ,
Satoru Tsuneto  and
Yasuo Shima
Saran Yoshida*
Affiliation:
Center for Cancer Control and Information Services, National Cancer CenterTokyo, Japan
Mariko Shiozaki
Affiliation:
International Center for Human Sciences, Kinki University, Higashi-Osaka City, 5, Japan
Makiko Sanjo
Affiliation:
Department of Adult Health Nursing, Faculty of Medicine, Toho University, Ota-ku, Tokyo, Japan
Tatsuya Morita
Affiliation:
Department of Palliative and Supportive Care, Palliative Care Team, and Seirei Hospice, Seirei Mikatahara General Hospital, Hamamatsu, Shizuoka 433-8558, Japan
Kei Hirai
Affiliation:
Center for the Study of Communication Design, Graduate School of Human Sciences & Graduate School of Medicine, Osaka University, Suita, Osaka, Japan
Satoru Tsuneto
Affiliation:
Department of Palliative Medicine, Graduate School of Medicine, Osaka University, Suita, Osaka, Japan
Yasuo Shima
Affiliation:
Department of Palliative Medicine, Tsukuba Medical Center Hospital, Tsukuba, Ibaraki, Japan
*
Address correspondence and reprint requests to: Saran Yoshida, Center for Cancer Control and Information Services, National Cancer Center, 5-1-1 Tsukiji, Chuo-ku, Tokyo, 104-0045, Japan. E-mail: saryoshi@ncc.go.jp
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Abstract

Objective:

The primary end points of this analysis were to explore 1) the practices of prognostic disclosure for patients with cancer and their family members in Japan, 2) the person who decided on the degree of prognosis communication, and 3) family evaluations of the type of prognostic disclosure.

Method:

Semistructured face-to-face interviews were conducted with 60 bereaved family members of patients with cancer who were admitted to palliative care units in Japan.

Results:

Twenty-five percent of patients and 75% of family members were informed of the predicted survival time of the patient. Thirty-eight percent of family members answered that they themselves decided on to what degree to communicate the prognosis to patients and 83% of them chose not to disclose to patients their prognosis or incurability. In the overall evaluation of prognosis communication, 30% of the participants said that they regretted or felt doubtful about the degree of prognostic disclosure to patients, whereas 37% said that they were satisfied with the degree of prognostic disclosure and 5% said that they had made a compromise. Both in the “prognostic disclosure” group and the “no disclosure” group, there were family members who said that they regretted or felt doubtful (27% and 31%, respectively) and family members who said that they were satisfied with the degree of disclosure (27% and 44%, respectively).

Significance of results:

In conclusion, family members assume the predominant role as the decision-making source regarding prognosis disclosure to patients, and they often even prevent prognostic disclosure to patients. From the perspective of family members, any one type of disclosure is not necessarily the most acceptable choice. Future surveys should explore the reasons why family members agree or disagree with prognostic disclosures to patients and factors correlated with family evaluations.

Keywords

Prognostic disclosurePatientsFamilyCancerDecision making
Type
Original Articles
Information
Palliative & Supportive Care , Volume 11 , Issue 5 , October 2013 , pp. 383 - 388
Copyright
Copyright © Cambridge University Press 2012 

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