嚴重腦損傷病患家屬之醫病共享決策模式

Shared Decision Making Model for Families of Patients with Severe Brain Injury

醫病共享決策（shared decision making, SDM）是指醫療人員和病人在進行醫療決策前，能以現有實證結果及醫療專業為基礎，提供病人疾病相關資訊及可行的治療方案，引導病人或家屬提出個別化的考量及期待，經醫病雙向溝通後，共同訂定可行且對病人最有利的醫療決策。其已成為現今國際上良好醫療照護的一項重要指標。在醫病共享決策的過程中，醫師和病人或家屬之間應維持夥伴關係，醫師可透過醫病共享決策輔助工具（patient decision aids, PDA），協助病人或家屬了解不同治療選項間的差異，並引導病人或家屬表達自身的喜好或想法後，協助病人或家屬做出醫療決定，包括預立醫療照護諮商（advance care planning, ACP）。過程中病人或家屬需要主動表達自己的想法、價值觀、目標及對治療的喜好，雙方經由溝通協調後共同作出決策。但醫病共享決策應用於嚴重腦損傷病患的實際溝通對象僅為家屬，因家屬的角色受到親疏、財務負擔與繼承等多重因素影響，決策之複雜度遠較其它疾病為甚。本文試以嚴重腦損傷病患為例，探討醫療人員和病患家屬執行醫病共享決策實務之可行性。

Shared decision making (SDM) means that before medical staff and patients make medical decisions, they can provide patients with disease-related information and feasible treatment plans based on existing empirical results and professional knowledge, and guide patients or family members to express their personal considerations and expectations, through two-way communication between physicians and patients by patient decision aids (PDA), jointly make feasible and most beneficial medical decisions for the patients. It has become an important indicator of good medical care in the world today. In the process of sharing decision-making between doctors and patients, a partnership should be maintained between the doctor and the patient or family member. The doctor should assist the patient or family member to understand the differences between different treatment options, and guide the patient or family member to express their own preferences or ideas before assisting the patient or family members to make medical decisions, including advance care planning (ACP). During the process, patients or family members need to actively express their thoughts, values, goals and preferences for treatment, and both parties make joint decisions after communication and coordination. However, for patients with severe brain injury the actual target of communication shared decision-making only applied to family members. The role of family members is compromised by multiple factors such as kinship, financial burden, and inheritance. The process of decision-making is far more complex than other diseases. This article attempts to take patients with severe brain injury as an example to explore the possibility of shared decision-making practices for medical staff and patients' families.