Cheng Hon Wai Benjamin, Chan Oi Man Iman, Chan Chun Hung Red, Chan Wan Hung, Fung Koon Sim, Wong Kar Yin
1 Medical Palliative Medicine (MPM) Unit, Department of Medicine and Geriatrics, Tuen Mun Hospital, New Territories, Hong Kong.
2 Palliative Home Care Team, Tuen Mun Hospital, New Territories, Hong Kong.
Am J Hosp Palliat Care. 2018 Jun;35(6):847-851. doi: 10.1177/1049909117735832. Epub 2017 Oct 15.
Motor neuron disease (MND) is a neurodegenerative disease and manifested as progressive decline in physical, respiratory, swallowing and communication function, and ultimately death. Traditional model of care was fragmented and did not match with multifacet needs of patients and carers. Furthermore, there could be lack of integrated care at end of life for patients with MND in most lower- and middle-income countries or in places with inadequate palliative care (PC) coverage. In view of this, a special workgroup for patients with MND, which includes neurologist, respiratory physician, rehabilitation specialist, and PC physician was formed in Hong Kong since year 2011. In various disease phase, each specialty team plays a leading role in coordinated care of patients with MND. From July 2011 to June 2017, a total of 52 patients with MND were referred for PC; 41 deceased patients with MND were included into data analysis. Major cause of death remains pneumonia (54.8%) and respiratory failure (40.5%). Most of the patients with MND (66.7%) died in acute ward and neurology units, with only 11.9% dying in PC units and hospices. The PC team plays a major role in advance care planning (ACP), and most patients had their ACP documented at second or third PC clinic visit (93.8%). Patients with MND often have limitations in mobility, swallowing difficulty, respiratory insufficiency requiring ventilator support, and various psychosocial needs. This highlighted the importance of early PC referral.
运动神经元病（MND）是一种神经退行性疾病，表现为身体、呼吸、吞咽及沟通功能的进行性衰退，最终导致死亡。传统的照护模式零散，无法满足患者及照护者的多方面需求。此外，在大多数低收入和中等收入国家或姑息治疗（PC）覆盖不足的地区，MND患者在生命末期可能缺乏综合照护。有鉴于此，自2011年起，香港成立了一个由神经科医生、呼吸内科医生、康复专家及PC医生组成的MND患者特别工作组。在疾病的各个阶段，各专科团队在MND患者的协调照护中发挥主导作用。2011年7月至2017年6月，共有52例MND患者被转诊至PC；41例已故MND患者被纳入数据分析。主要死因仍是肺炎（54.8%）和呼吸衰竭（40.5%）。大多数MND患者（66.7%）在急症病房和神经内科病房死亡，仅有11.9%在PC病房和临终关怀机构死亡。PC团队在预先照护计划（ACP）中发挥主要作用，大多数患者在第二次或第三次PC门诊就诊时就有ACP记录（93.8%）。MND患者常存在行动不便、吞咽困难、呼吸功能不全需要呼吸机支持以及各种心理社会需求等问题。这凸显了早期转诊至PC的重要性。
