Marie Curie Hospice Newcastle, Newcastle upon Tyne, Tyne & Wear, UK
Marie Curie Hospice Newcastle, Newcastle upon Tyne, Tyne & Wear, UK.
BMJ Support Palliat Care. 2023 Oct;13(e1):e88-e90. doi: 10.1136/bmjspcare-2020-002428. Epub 2020 Jul 24.
NICE (National Institute for Health & Care Excellence) guidance recommends that healthcare professionals with expertise in palliative care should be an integral part of the multidisciplinary team in managing patients with motor neuron disease (MND). Those in the poorest prognostic group may benefit from early referral to help manage rapidly progressive symptoms, psychological distress and offer additional support with complex decision-making and early robust advance care planning. Patients frequently develop dysphagia and gastrostomy feeding can be used to prolong survival and improve quality of life. As the disease progresses patients may request withdrawal of life-sustaining treatment such as gastrostomy feeding; however, a literature search found no evidence or guidance on how best to facilitate this. We present the case of a patient with MND admitted to the hospice inpatient unit requesting withdrawal of gastrostomy feeding, outline the challenges and need for further consensus guidelines to inform practice.
NICE（国家卫生与保健卓越研究所）指南建议，在姑息治疗方面具有专业知识的医疗保健专业人员应该是管理运动神经元病（MND）患者的多学科团队的一个组成部分。那些预后最差的患者可能受益于早期转介，以帮助管理快速进展的症状、心理困扰，并在复杂的决策和早期有力的预立医疗照护计划方面提供额外的支持。患者经常出现吞咽困难，胃造口喂养可以延长生存期并提高生活质量。随着疾病的进展，患者可能会要求停止维持生命的治疗，如胃造口喂养；然而，文献检索没有发现关于如何最好地促进这一过程的证据或指导。我们介绍了一例 MND 患者入住临终关怀住院病房，要求停止胃造口喂养的案例，概述了所面临的挑战和对进一步共识指南的需求，以指导实践。
