Understanding NIV

What is NIV?

How does NIV work?

What does NIV equipment look like?

How is NIV different from CPAP?

Potential benefits and risks of NIV

Will NIV help me live longer?

How might NIV improve my symptoms and overall wellbeing?

Are there any potential side effects or complications I should be aware of?

How does NIV compare to other treatment options for respiratory issues in MND?

The right time to start NIV

At what point in my MND journey should I consider starting NIV?

What symptoms or test results suggest that I should start NIV?

Are there any risks/benefits associated with starting NIV too early or too late?

Living with NIV

Can you tell me what life might be like on NIV?

What might the mask feel like?

Will I be able to use NIV and still carry out my normal activities?

How might NIV impact my mobility, ability to communicate or travel?

How might NIV use impact my family or caregivers?

Changes over time

How might NIV use change over time?

At what point might NIV no longer help me, and what are the next steps?

How will my healthcare team monitor and adjust my NIV treatment over time?

Stopping NIV

Can NIV be stopped at a later stage if I don’t want it anymore? How would that be managed?

What do I need to know about stopping NIV?

What symptoms might I experience if I stop using NIV?

How will my care plan change if I stop NIV?

What support is available to me and my family if I decide to stop NIV?

How can I document my wishes about NIV in my advance care plan?

Choosing NIV

What happens if I choose NIV?

What does the process of starting NIV involve?

How long do I need to wait to start NIV?

How much will NIV cost me?

Are there support groups or resources for MND patients using NIV?

What training will my caregivers and I receive?

Will NIV change my normal sleep positioning or routine, or make it difficult to fall or stay asleep?

How often will I need follow-up appointments?

Who should I contact if I have problems or questions about my NIV?

Occasionally, a person may be interested in starting NIV, but their doctor may recommend waiting or feel it is not the right option. If this happens to you and you want to better understand this decision or discuss your wishes, these questions may be helpful

Can you help me understand your reasoning for not recommending NIV?

What criteria or conditions would need to be met for NIV to become an option?

Would it make sense to discuss this with another healthcare professional for their opinion?

Choosing not to use NIV

What happens if I decide not to use NIV?

What are the potential consequences of not starting NIV?

What alternative treatments or management strategies are available?

Will saying No to NIV affect my other treatments and care?

Can I change my mind later if I decide I want to try NIV?

How often should we revisit the discussion about NIV?

What signs or symptoms should I watch for that might indicate I need to reconsider NIV?