University of Rochester Medical Center, Rochester, NY, USA.
The University of Melbourne, Fitzroy, VIC, Australia; St Vincent's Hospital, Melbourne, Fitzroy, VIC, Australia; Vrije Universiteit Brussel, Brussel, Belgium.
Lancet Neurol. 2023 Jul;22(7):619-631. doi: 10.1016/S1474-4422(23)00129-1.
Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.
神经系统疾病从确诊之时起便会给患者及其家属带来身体、心理社会和精神或存在方面的痛苦。缓和医疗专注于通过针对这种多维痛苦来改善重病患者及其家属的生活质量。临床试验的证据表明，缓和医疗能够通过为运动神经元病、多发性硬化症或帕金森病患者提供门诊或家庭为基础的缓和医疗干预、为晚期痴呆症患者提供住院缓和医疗咨询、为社区中痴呆症患者提供电话式病例管理以及为长期护理中的晚期痴呆症患者提供护士主导的与决策辅助工具相关的讨论，从而改善患者和照护者的结局。遗憾的是，在当前的医疗保健标准下，大多数神经系统疾病患者并未得到其所需的缓和医疗支持。改善这种情况需要常规筛查以识别个体的缓和医疗需求，将缓和医疗方法融入常规神经系统护理中，并在神经科医生和缓和医疗专家之间开展合作。还需要开展研究、教育和宣传工作来提高护理标准。
