The Beacon Specialist Community Supportive and Palliative Care Service, Guildford, Surrey, UK.
Palliat Med. 2011 Apr;25(3):262-5. doi: 10.1177/0269216310389224. Epub 2011 Jan 12.
Long-term home-based invasive ventilation in patients with motor neurone disease/amyotrophic lateral sclerosis (MND/ALS) remains rare in the UK. We describe a case of an MND/ALS patient who was treated with long-term invasive ventilation at home but subsequently requested its withdrawal despite a seemingly stable period of his illness. We also discuss the impact of the delivery of this treatment and its withdrawal on his carers, primary healthcare team, community trust managers and specialist palliative care team.
在英国,长期在家中进行有创通气治疗运动神经元病/肌萎缩侧索硬化症(MND/ALS)的情况仍然很少见。我们描述了一例 MND/ALS 患者在家中接受长期有创通气治疗,但随后尽管病情似乎稳定仍要求撤机。我们还讨论了提供这种治疗及其撤机对他的照顾者、初级保健团队、社区信托经理和专科姑息治疗团队的影响。