Frameworks for Information Disclosure to the Terminally Ill -In an Ethics of Relationship in Japan-

这项研究使用了我们早期关于临终关怀伦理问题的研究数据，采取了下一步合乎逻辑的步骤，并开发了四种可能的框架，在关系伦理的范围内向家人和患者披露信息。框架A在很大程度上依赖于不向患者提供信息并让患者家属做出决定而不造成伤害的概念。只有当患者表示他/她不想知道，或者当患者的家人已经知道患者的意图并与患者保持良好关系时，才会在道德上使用这种模式。在框架B中，家人首先收到信息，然后告诉患者。延迟告知取决于患者是否准备好听到这个消息。让病人知道并不等同于病人被告知。框架C要求医生将患者的绝症告知家属和患者。这样，当患者收到这一消息时，家属可以帮助和支持患者。框架D，只告知患者有关诊断和预后以及这些对未来意味着什么。这是最不寻常的，除了那些没有家人的患者。这四个框架通过L)家庭访谈，2)医生访谈，3)文献综述来检验。研究结果表明：1)框架D很少使用。这种家庭参与信息披露在日本是常态。2)框架C在伦理上最符合日本的关系伦理。

This study, using data of our earlier studies regarding ethical issues in terminal care, took the next logical step and developed four possible frameworks for information disclosure to families and patients within an ethics of relationships. Framework A relies heavily on notions of doing no harm by withholdmg information from patients and having the family make decisions. The circumstances that this model is ethically used is only when the patient indicates that he/she does not want to know or when the family already knows the patient's intentions and has a good relationship with the patient. In framework B, the family receives the information first and the patient is told later. The delayed telling depends on the perceived readiness of the patient to hear this news. For the patient to know is not the same as the patient being told. Framework C requires the doctor to inform both the family and the patient about the patient's terminal illness. In this way, the family can help and support the patient when the patient receives this news. Framework D, informs only the patient about the diagnosis and prognosis and what these mean for the future. This would be most unusual except in those cases of patients who have no family.These four frameworks were tested by l )family interviews, 2) physicians interviews, and 3) literature review. The results showed the following :1) Framework D is seldom used. This family involvement in information disclosure is the norm in Japan.2) Framework C fits most ethically with the Japanese ethics of relationship.