筋萎縮性側索硬化症の病状説明

Communicating the Diagnosis of Amyotrophic Lateral Sclerosis

筋萎縮性側索硬化症（ALS）の説明の場には患者の同意を得て家族，介護者，多職種の同席を促す。病状，患者の性格，家庭環境などによって，患者の受け止め方は相当に異なるので説明の内容も工夫する必要がある。十分な理解や納得が得られていない場合には，繰り返し説明を行う。対象者の理解や受容の状態によっては，段階的に説明を行うことも考慮する。治療方針を決定しても，あらためてその方針を変更してもよいと伝える。多職種が参加した説明では，それぞれの職種が説明するのはもちろんであるが，チームリーダーが患者の受け止めを把握しておくことが大切である。

Abstract

When explaining amyotrophic lateral sclerosis, family members, caregivers, and other professionals are encouraged to be present with the patient's consent. Patients' perceptions vary considerably depending on their condition, personality, and home environment; therefore, the content of the explanation should be carefully considered. If the patient did not fully understand or provide consent to participate, the explanation was repeated. Depending on the patient's level of understanding and acceptance, we provided step-by-step explanations. The patients were informed that the decision could change later, even after the treatment plan had been decided. In explanations involving a multidisciplinary team, each professional explains; however, it is also important for the team leader to understand the patient's perceptions.