Ventilation choices at end of life

Knowing your options around ventilation can help you to plan ahead

As the breathing muscles continue to weaken due to MND/ALS, ventilation will become less effective. Ultimately there will come a point when ventilation can no longer sustain life.

This can be difficult to think and talk about in advance. When you do feel ready, these conversations can help you and your loved ones to plan ahead, practically and emotionally.

You have choices around your breathing support at the end of life. There are three main options:

• Continue with ventilation until end of life
• Stop ventilation in the final hours of life, to die without the machine on
• Stop ventilation earlier, if you feel that using it has become a burden

In this film Debbie outlines these options and how they may work. It is an introduction to help support your thinking and conversations. When you are ready, your care team can discuss these in more depth with you.

As ventilation is a treatment, you can legally choose to stop having it. This is called withdrawal. Withdrawal requires careful planning, with strong medications to manage symptoms and additional support from health care staff. You are likely to die within few minutes or hours of withdrawing from ventilation, if you are dependent upon it for your breathing.

The MND Association have useful in depth resources around withdrawal of ventilation and end of life. Find them in External Resources.