End of life care and withdrawal of NIV

Whilst NIV can improve quality of life and prolong survival for people living with NIV, it will not prevent the disease from progressing.

As the patient’s disease deteriorates their respiratory muscles will become weaker. Patients will need increasing support from NIV to achieve effective ventilation and relieve symptoms. Initially this may mean they notice symptoms if nocturnal NIV has been disruptive. They may become more fatigued or breathless in the day and may benefit from daytime NIV.

If patients survive long enough they will need continuous NIV to maintain adequate ventilation and relieve symptoms of breathlessness. Ultimately NIV alone will become ineffective at achieving adequate ventilation and symptom control.

People living with motor neurone disease (MND) might wish to plan how to manage their breathing at end of life early on. This section provides information and guidance about stopping NIV and planning for end of life care.

Further resources to support your involvement in the withdrawal of NIV and end of life care in MND can be found in the Resources section. You can also refer to the comprehensive guidance for professionals published by the Association for Palliative Medicine for Great Britain and Ireland.

Learn more about the different aspects of end of life care:

Discussing the patient’s choice to continue or withdraw NIV

Considering the withdrawal of NIV

Making the decision to withdraw NIV

Supporting people who choose to continue using NIV

Ethics and legalities surrounding the withdrawal of NIV

Planning the withdrawal of NIV

Conducting the withdrawal of NIV

After the withdrawal of NIV

End of life care and withdrawal of NIV - FAQs