Telling the Truth of Cancer and Informed Consent at the Terminal Stage -Through a Questionnaire Survey to the Bereaved Families-

Hajime Fujimoto, Yojiro Hashiguchi, Hideki Ueno and Hidetaka Mochizuki

Department of Surgery I, National Defense Medical College

Introduction: We conducted a questionnaire survey among bereaved families of patients who died of colorectal cancer to determine wheather to inform them of the cancer diagnosis and informed consent at the terminal stage. Methods: Questionnaires sent to bereaved families of 187 patients who died of colorectal cancer after surgery between 1992 and 1999 were analyzed using data from the 95 bereaved families who responded. Results: Of these patients, 35% were told about their cancer (disclosure group), 53% were not told but appeared to be aware that they had cancer (notification group), and 12% were not told and appeared unaware (non notification group). The rate of cancer disclosure was significantly higher in the second half of the observation period than in the first. In the disclosure group, 63% could morally accept their physical deterioration at the terminal stage, compared to only 18% of those without disclosure. Among bereaved families in the disclosure group, 75% responded positively to disclosure, while only 36% in the non notification group did. Fifty-nine percent of patients survived longer than 2 years after operation satisfied with "favorable communication", while only 33% of patients who survived less than 2 years (p<0.05). Only 7.4% died at home. Among those dying hospitalized, 88% died at general hospitals other than ours, and only 27% of their families were satisfied with terminal hospital care. Discussion: Cancer disclosure helped patients with terminal cancer accept their physical deterioration more easily. Many patients and their families were dissatisfied with current terminal care, necessitating greater efforts to ensure a favorable environment at the terminal stage based on fully informed consent obtained from both patients and families.

Key words
informed consent, colorectal cancer, telling the truth of cancer, cancer disclosure, palliative care

Reprint requests
Hajime Fujimoto Department of Surgery I, National Defense Medical College
3-2 Namiki, Tokorozawa city, 359-8513 JAPAN

Accepted
April 28, 2004

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