Before starting NIV

When a patient declines NIV

Not all people living with motor neurone disease who have respiratory deterioration will want to trial non-invasive ventilation (NIV) and their choice should be supported.

However, as outlined in the following video, it is important to understand that the patient’s wishes might change so it is vital that healthcare professionals revisit the patient’s wishes.

“No now doesn't mean no forever - keep the conversation open.”

Julie, person living with MND

Reasons for declining NIV

Some patients may wish to delay starting NIV for various reasons which clinicians should explore. These might be because the patient has not been fully informed about NIV, is overwhelmed or not ready to accept the diagnosis.

Some patients may wish to keep their life as ‘normal’ as possible or not wish to prolong their life and others may decline for practical reasons such as the need for carer support to use the device. Healthcare professionals should explore these reasons and ensure that the patient understands the options and that the treatment plan is in line with the patient’s values and wishes.

Other treatment options

Healthcare professionals should discuss other treatment options available and explain that these options will not improve breathing and gas exchange in the way NIV can do. These options that have been used for managing the symptoms of respiratory insufficiency can be offered to all patients whether they use NIV or not.

In the following videos, Debbie Freeman, a Respiratory Nurse, explains how she discusses alternative supportive measures with patients who feel like NIV is not for them or they cannot tolerate the NIV and how she manages people who decline NIV.

The use of NIV may be revisited at times such as if the patient develops respiratory symptoms or wishes to talk about their future or gastrostomy feeding. Discussions about NIV should also trigger discussions around advanced decision making to ensure that patients’ wishes are communicated. Patients who decline NIV may also wish to decline other life sustaining therapies such as CPR or hospital admission.

The patient may wish to create an Advance Decision to Refuse Treatment (ADRT) that is legally binding and can be helpful in reaching a best interests decision in the event of a loss of capacity.

Good practice points