Department of Clinical Neurologic Sciences, Western University, London, ON, Canada.
Department of Clinical Neurologic Sciences, Western University, London, ON, Canada.
Handb Clin Neurol. 2022;190:105-125. doi: 10.1016/B978-0-323-85029-2.00011-7.
Life-limiting and life-threatening neurologic conditions often progress slowly. Patients live with a substantial symptom burden over a long period of time, and there is often a high degree of functional and cognitive impairment. Because of this, the most appropriate time to initiate neuropalliative care is often difficult to identify. Further challenges to the incorporation of neuropalliative care include communication barriers, such as profound dysarthria or language impairments, and loss of cognitive function and decision-making capacity that prevent shared decision making and threaten patient autonomy. As a result, earlier initiation of at least some components of palliative care is paramount to ensuring patient-centered care while the patient is still able to communicate effectively and participate as fully as possible in their medical care. For these reasons, neuropalliative care is also distinct from palliative care in oncology, and there is a growing evidence base to guide timely initiation and integration of neuropalliative care. In this chapter, we will focus on when to initiate palliative care in patients with life-limiting, life-threatening, and advanced neurologic conditions. We will address three main questions, which patients with neurologic conditions will benefit from initiation of palliative care, what aspects of neurologic illness are most amenable to neuropalliative care, and when to initiate neuropalliative care?
生命有限且危及生命的神经疾病通常进展缓慢。患者在很长一段时间内承受着大量的症状负担,并且常常存在高度的功能和认知障碍。因此,确定开始神经姑息治疗的最合适时间通常很困难。神经姑息治疗的实施还面临其他挑战,包括沟通障碍,如严重的构音障碍或语言障碍,以及认知功能和决策能力的丧失,这些障碍会妨碍共同决策并威胁到患者的自主权。因此,至少在患者仍能够有效沟通并尽可能充分参与他们的医疗护理时,尽早开始姑息治疗的某些部分对于确保以患者为中心的护理至关重要。出于这些原因,神经姑息治疗也有别于肿瘤学中的姑息治疗,并且有越来越多的证据基础来指导神经姑息治疗的及时启动和整合。在本章中,我们将重点讨论在患有生命有限、危及生命和晚期神经疾病的患者中何时开始姑息治疗。我们将解决三个主要问题,即哪些患有神经疾病的患者将从姑息治疗的开始中受益,哪些神经疾病方面最适合神经姑息治疗,以及何时开始神经姑息治疗?