Julie’s choice to stop NIV

"After being with you though everything, I get it and I fully support you"
- Russ, Julie's son

This is a poignant video that some people may find upsetting.

Julie and her son Russ tell us about their carefully considered decision for Julie to withdraw from NIV. This video was filmed a few weeks before Julie died.

Julie lived with MND/ALS for eight years. She talks here about how she felt her symptoms and quality of life had become unbearable for her. As ventilation is a treatment, people can refuse to continue with it.

For Julie, her end of life care plan involved intensive support, with strong sedation and painkillers. She was in a hospice with her family around her.

Russ was really involved in Julie’s decision. He helped care for her over the years and they had a very close relationship. Their discussions supported them to make a shared and well informed choice that they both felt comfortable with.

If you are considering stopping ventilation talk to your care team. You will need additional support and medications to ensure you are comfortable in your last hours.