Strand Jacob J, Feely Molly A, Kramer Neha M, Moeschler Susan M, Swetz Keith M
Division of General Internal Medicine, Department of Medicine, Section of Palliative Medicine, Mayo Clinic, Rochester, MN, USA
Division of General Internal Medicine, Department of Medicine, Section of Palliative Medicine, Mayo Clinic, Rochester, MN, USA.
Am J Hosp Palliat Care. 2016 May;33(4):363-8. doi: 10.1177/1049909114561997. Epub 2014 Dec 7.
We present the case of a 34-year-old woman with Klippel-Feil syndrome who developed progressive generalized dystonia of unclear etiology, resulting in intractable pain despite aggressive medical and surgical interventions. Ultimately, palliative sedation was required to relieve suffering. Herein, we describe ethical considerations including defining sedation, determining prognosis in the setting of an undefined neurodegenerative condition, and use of treatments that concurrently might prolong or alter end-of-life trajectory. We highlight pertinent literature and how it may be applied in challenging and unique clinical situations. Finally, we discuss the need for expert multidisciplinary involvement when implementing palliative sedation and illustrate that procedures and rules need to be interpreted to deliver optimal patient-centered plan of care.
我们报告了一例34岁患有Klippel-Feil综合征的女性病例，该患者出现了病因不明的进行性全身性肌张力障碍，尽管采取了积极的药物和手术干预措施，但仍导致顽固性疼痛。最终，需要进行姑息性镇静以减轻痛苦。在此，我们描述了伦理考量，包括定义镇静、在未明确的神经退行性疾病背景下确定预后，以及使用可能同时延长或改变临终轨迹的治疗方法。我们强调了相关文献以及它在具有挑战性和独特临床情况中的应用方式。最后，我们讨论了实施姑息性镇静时专家多学科参与的必要性，并说明需要对程序和规则进行解释，以提供以患者为中心的最佳护理计划。
