Burchardi Nicole, Rauprich Oliver, Hecht Martin, Beck Marcus, Vollmann Jochen
Institute for History of Medicine and Medical Ethics, Friedrich-Alexander-University Erlangen-Nuremberg, Glueckstrasse 10, 91054 Erlangen, Germany.
J Neurol Sci. 2005 Oct 15;237(1-2):67-74. doi: 10.1016/j.jns.2005.05.013.
Patients suffering from amyotrophic lateral sclerosis (ALS) eventually lose their ability to communicate their treatment preferences in later stages of the disease. A living will enables ALS patients to specify their choices concerning life-sustaining treatment in advance. Our premise was that completion of a living will should be preceded by a discussion between patient and physician. We conducted a qualitative study of a sample of 15 neurologists and 15 ALS patients from two neurology centers in Germany. Our aim was to explore how discussions about living wills are undertaken. Data analysis followed grounded theory techniques. Our findings showed that both the patients and the physicians considered living wills to be closely connected to forthcoming death. Physicians waited for respiratory failure to occur before they informed ALS patients about living wills, an information strategy that we called the "wait-and-see-policy". The patients completed their living will when they had accepted the hopelessness of their disease. They mostly used living will forms and did not see the necessity to set down disease-specific preferences. They intended to wait for symptoms to emerge before they made the decision about whether or not to accept life-sustaining treatment. The patients as well as the physicians pursued a wait-and-see policy towards end-of-life care, thus weakening the purpose of living wills. Our results point to the necessity and importance of an open and honest patient-physician communication which is a prerequisite for the discussion of living wills.
患有肌萎缩侧索硬化症（ALS）的患者在疾病后期最终会失去表达其治疗偏好的能力。生前预嘱能让ALS患者提前明确他们在维持生命治疗方面的选择。我们的前提是，在完成生前预嘱之前，患者和医生应进行讨论。我们对来自德国两个神经科中心的15名神经科医生和15名ALS患者进行了定性研究。我们的目的是探讨关于生前预嘱的讨论是如何进行的。数据分析采用扎根理论技术。我们的研究结果表明，患者和医生都认为生前预嘱与即将到来的死亡密切相关。医生会等到呼吸衰竭出现后才告知ALS患者生前预嘱的相关信息，我们将这种信息策略称为“观望政策”。患者在接受了自己疾病的无望结局后才完成生前预嘱。他们大多使用生前预嘱表格，认为没有必要写下针对特定疾病的偏好。他们打算在出现症状后才决定是否接受维持生命的治疗。患者和医生在临终关怀方面都采取了观望政策，从而削弱了生前预嘱的目的。我们的结果表明，开放和诚实的医患沟通是讨论生前预嘱的先决条件，这一点很有必要且很重要。
