运动神经元疾病患者的姑息治疗:当前的挑战。

Degenerative Neurological and Neuromuscular Disease Pub Date : 2016-05-26 eCollection Date: 2016-01-01 DOI:10.2147/DNND.S85103
David J Oliver
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引用次数: 11

摘要

运动神经元疾病是一种进行性疾病,在疾病的发展过程中,患者及其家属面临着许多挑战,身体越来越虚弱,多种功能丧失。为这些病人及其家属提供护理同样具有挑战性,需要预测和回应病人的需求。随着对该疾病及其管理的了解越来越多,包括遗传基础、认知改变、通气支持和胃造口术等干预措施的使用,挑战也越来越多。还越来越需要确保认识到晚期阶段,以便所有人都能为生命的终结做好更充分的准备,包括认识到病情恶化和生命终结、预先制定护理计划、临终时的症状管理和社会心理护理,以及处理协助死亡的请求。仔细的评估和良好的多学科团队(MDT)工作可以使患者及其家属尽可能拥有良好的生活质量,并允许患者平静地死亡。
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Palliative care for patients with motor neurone disease: current challenges.

Motor neurone disease is a progressive disease, and the patient and his/her family face many challenges during the disease progression, with increasing weakness and multiple losses of function. The provision of care for these patients and their families is equally challenging, anticipating and responding to the person's needs. There are increasing challenges as more is understood about the disease and its management, including the genetic basis, cognitive change, the use of interventions such as ventilatory support, and gastrostomy. There is also an increasing need to ensure that the later stages are recognized so that all can be more prepared for the end of life, including recognition of deterioration and end of life, advance care planning, symptom management and psychosocial care at the end of life, and coping with requests for assisted dying. Careful assessment and good multidisciplinary team (MDT) work can enable patients and their families to have as good a quality of life as possible, and allow a peaceful death of the patient.

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