Background NICE guidance recommends that non-invasive ventilation (NIV) should be considered for patients with motor neuron disease (MND). The guidelines acknowledge further research is needed on NIV withdrawal. There is little evidence focusing on the issues doctors face when withdrawing NIV in this group.
Aims To identify issues and challenges doctors have encountered when withdrawing NIV in MND patients.
Methods An electronic questionnaire was sent to 1000 members of the Association of Palliative Medicine. Participants rated how practically, emotionally and ethically challenging they found the process of NIV withdrawal. They were invited to expand on issues using free text.
Results 134 responded – 95% were doctors working in various settings, 62% were consultants. 60% had been directly involved in withdrawal of NIV in MND patients. Only 5% used a protocol or guideline. Most found the process of NIV withdrawal practically, emotionally and ethically challenging. The percentage scoring 5 or more on a likert scale (10 =very challenging) were 70% for practically challenging, 75% for emotionally challenging and 60% for ethically challenging. 12% found NIV very emotionally challenging scoring 10 on the scale. Thematic analysis of the free text revealed some common difficulties. Lack of guidance on practical aspects of withdrawal, poor advance care planning and the need to support all involved to prevent conflict were recurrent themes. Statements relating to the emotional burden were diverse but suggest a significant personal impact is felt by many palliative care doctors.
Conclusions The withdrawal of NIV in patients with MND appears to pose multiple challenges to palliative care doctors involved. Development of guidelines and a clear ethical statement of conduct may help with some of the practical and ethical challenges. Emotional issues appear more complex. Further research into the challenges faced by all professionals in the withdrawal of NIV is necessary.
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