Demertzi Athena, Jox Ralf J, Racine Eric, Laureys Steven
Coma Science Group, Cyclotron Research Centre & Neurology Department , University and University Hospital of Liège, Liège , Belgium .
Brain Inj. 2014;28(9):1209-15. doi: 10.3109/02699052.2014.920526. Epub 2014 Jun 9.
Patients with locked-in syndrome often self-report a higher quality of life than generally expected. This study reports third-person attitudes towards several salient issues on locked-in syndrome.
Close-ended survey among conference attendees from 33 European countries. Analysis included chi-square tests and logistic regressions.
From the 3332 respondents (33% physicians, 18% other clinicians, 49% other professions; 47% religious), 90% agreed that patients with locked-in syndrome can feel pain. The majority (75%) disagreed with treatment withdrawal, but 56% did not wish to be kept alive if they imagined themselves in this condition (p < 0.001). Religious and southern Europeans opposed to treatment withdrawal more often than non-religious (p < 0.001) and participants from the North (p = 0.001). When the locked-in syndrome was compared to disorders of consciousness, more respondents endorsed that being in a chronic locked-in syndrome was worse than being in a vegetative state or minimally conscious state for patients (59%) than they thought for families (40%, p < 0.001).
Personal characteristics mediate opinions about locked-in syndrome. The dissociation between personal preferences and general opinions underlie the difference in perspective in disability. Ethical responses to dilemmas involving patients with locked-in syndrome should consider the diverging ethical attitudes of stakeholders.
闭锁综合征患者自我报告的生活质量往往高于普遍预期。本研究报告了第三方对闭锁综合征几个突出问题的态度。
对来自33个欧洲国家的会议参与者进行封闭式调查。分析包括卡方检验和逻辑回归。
在3332名受访者中（33%为医生，18%为其他临床医生，49%为其他职业；47%有宗教信仰），90%的人认为闭锁综合征患者会感到疼痛。大多数人（75%）反对停止治疗，但56%的人表示，如果自己处于这种状况，不希望维持生命（p<0.001）。有宗教信仰的人和南欧人比无宗教信仰的人（p<0.001）以及来自北方的参与者（p=0.001）更常反对停止治疗。当将闭锁综合征与意识障碍进行比较时，更多的受访者认可，对于患者而言，处于慢性闭锁综合征状态比处于植物人状态或最低意识状态更糟糕（59%），而他们认为对于患者家属而言则不然（40%，p<0.001）。
个人特征影响对闭锁综合征的看法。个人偏好与普遍观点之间的脱节是残疾观念差异的基础。对涉及闭锁综合征患者的困境的伦理回应应考虑利益相关者不同的伦理态度。
