Lerum Sverre Vigeland, Solbraekke Kari Nyheim, Holmøy Trygve, Frich Jan C
Institute of Health and Society, University of Oslo, Norway.
Sociol Health Illn. 2015 Jan;37(1):81-96. doi: 10.1111/1467-9566.12182.
This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2-5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.
本文探讨了运动神经元病（MND，又称肌萎缩侧索硬化症，ALS）中慢性病程和终末期的含义。运动神经元病的病因不明，也无法治愈，预期生存期为2至5年，但有几种干预措施可能改善病情或延长生命。本研究采用了对挪威医院和初级保健机构的医护人员以及家庭护理人员进行定性访谈的数据。参与者在整个疾病进程中，即使是在回顾病程时，也以微妙不同的方式强调了慢性病程和终末期的方面。由于医疗服务和医疗技术的改善，慢性病程和终末期之间的区别变得更加模糊，有时甚至含混不清。我们建议用“不稳定终末期”这一概念来描述这种模糊性。虽然运动神经元病是一种致命性诊断，但由于存在各种意外情况和干预措施会造成一个不确定的时间范围，所以它可能会受到质疑。这种不稳定性给依赖预后信息来安排工作的初级保健带来了挑战；医院通过预先安排会诊来应对这种不稳定性，从而避免明确给出预后。一些护理人员经历了我们所理解的“双重困境”，即同时面对慢性疾病和终末期疾病，这使得这个中间阶段更具挑战性。
