Abstract

BackgroundAlthough the attitude among doctors toward disclosing a cancer diagnosis is becoming more positive, informing patients of their disease has not yet become a common practice in Japan. We examined the psychological process, from hospitalization until death, among uninformed terminal cancer patients in Japan, and developed a psychological model.MethodsTerminal cancer patients hospitalized during the recruiting period voluntarily participated in in-depth interviews. The data were analyzed by grounded theory.ResultsOf the 87 uninformed participants at the time of hospitalization, 67% (N = 59) died without being informed of their diagnosis. All were male, 51–66 years of age, and all experienced five psychological stages: anxiety and puzzlement, suspicion and denial, certainty, preparation, and acceptance. At the end of each stage, obvious and severe feelings were observed, which were called "gates." During the final acceptance stage, patients spent a peaceful time with family, even talking about their dreams with family members.ConclusionUnlike in other studies, the uninformed patients in this study accepted death peacefully, with no exceptional cases. Despite several limitations, this study showed that almost 70% of the uninformed terminal cancer patients at hospitalization died without being informed, suggesting an urgent need for culturally specific and effective terminal care services for cancer patients in Japan.

Highlights

  • The attitude among doctors toward disclosing a cancer diagnosis is becoming more positive, informing patients of their disease has not yet become a common practice in Japan

  • This study identified the first four psychological processes of uninformed terminal cancer patients as hope, suspicion, anxiety, and depression; in the fifth stage, the patients were categorized into two groups: gave up or accepted death

  • Of the 87 terminal liver cancer patients hospitalized during the recruiting period without being informed of their diagnosis or prognosis, 67% (N = 59) died without knowing their diagnosis

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Summary

Introduction

The attitude among doctors toward disclosing a cancer diagnosis is becoming more positive, informing patients of their disease has not yet become a common practice in Japan. A nationwide study on death with dignity conducted by the Health, Labor, and Welfare Ministry of Japan revealed that only 46% of terminal cancer patients had been informed of their disease, demon-. BMC Palliative Care 2006, 5:6 http://www.biomedcentral.com/1472-684X/5/6 strating that informing patients has not yet become a common practice in Japan [9]. The Japanese norm based on the traditional obligations of family and health professionals has resulted in the practice of not disclosing information or a diagnosis to the patient [12,13]

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