Walter Hannah A W, Seeber Antje A, Willems Dick L, de Visser Marianne
Department of Neurology, Amsterdam University Medical Center, Academic Medical Center, University of Amsterdam, Amsterdam, Netherlands.
Section of Medical Ethics, Department of General Practice, Amsterdam University Medical Center, Academic Medical Center, University of Amsterdam, Amsterdam, Netherlands.
Front Neurol. 2019 Jan 14;9:1157. doi: 10.3389/fneur.2018.01157. eCollection 2018.
Chronic progressive neurological diseases like high grade glioma (HGG), Parkinson's disease (PD), and multiple sclerosis (MS) are incurable, and associated with increasing disability including cognitive impairment, and reduced life expectancy. Patients with these diseases have complex care needs. Therefore, timely advance care planning (ACP) is required. Our aim was to investigate timing and content of discussions on treatment restrictions, i.e., to initiate, withhold, or withdraw treatment in patients with HGG, PD, and MS, from the neurologists' perspective. We performed a national online survey amongst consultants in neurology and residents in The Netherlands. The questionnaire focused on their daily practice concerning timing and content of discussions on treatment restrictions with patients suffering from HGG, PD or MS. We also inquired about education and training in discussing these issues. A total of 125 respondents [89 neurologists (71%), 62% male, with a median age of 44 years, and 36 residents (29%), 31% male with a median age of 29 years] responded. Initial discussions on treatment restrictions were said to take place during the first year after diagnosis in 28% of patients with HGG, and commonly no earlier than in the terminal phase in patients with PD and MS. In all conditions, significant cognitive decline was the most important trigger to advance discussions, followed by physical decline, and initiation of the terminal phase. Most discussed issues included ventilation, resuscitation, and admission to the intensive care unit. More than half of the consultants in neurology and residents felt that they needed (more) education and training in having discussions on treatment restrictions. In patients with HGG discussions on treatment restrictions are initiated earlier than in patients with PD or MS. However, in all three diseases these discussions usually take place when significant physical and cognitive decline has become apparent and commonly mark the initiation of end-of-life care. More than half of the responding consultants in neurology and residents feel the need for improvement of their skills in performing these discussions.
像高级别胶质瘤（HGG）、帕金森病（PD）和多发性硬化症（MS）这样的慢性进行性神经疾病无法治愈，且会导致包括认知障碍在内的残疾加剧以及预期寿命缩短。患有这些疾病的患者有着复杂的护理需求。因此，需要及时进行预先护理计划（ACP）。我们的目的是从神经科医生的角度调查关于治疗限制（即对HGG、PD和MS患者启动、 withholding或停止治疗）讨论的时机和内容。我们在荷兰对神经科顾问医生和住院医师进行了一项全国性在线调查。问卷聚焦于他们在与HGG、PD或MS患者讨论治疗限制的时机和内容方面的日常实践。我们还询问了在讨论这些问题方面的教育和培训情况。共有125名受访者回复[89名神经科医生（71%），男性占62%，中位年龄44岁，以及36名住院医师（29%），男性占31%，中位年龄29岁]。据说，28%的HGG患者在诊断后的第一年就开始了关于治疗限制的初步讨论，而PD和MS患者通常不早于终末期。在所有情况下，显著的认知衰退是推进讨论的最重要触发因素，其次是身体衰退和终末期的开始。讨论最多的问题包括通气、复苏和入住重症监护病房。超过一半的神经科顾问医生和住院医师认为他们在进行关于治疗限制的讨论方面需要（更多）教育和培训。与PD或MS患者相比，HGG患者更早开始关于治疗限制的讨论。然而，在这三种疾病中，这些讨论通常在显著的身体和认知衰退变得明显时进行，并且通常标志着临终护理的开始。超过一半的参与调查的神经科顾问医生和住院医师认为需要提高他们进行这些讨论的技能。
