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.
Finding positions to support a patient’s breathing (eg the ideal position is an upright or slightly reclined position with the arms supported).
Providing adequate walking frames to reduce the pressure as this allows the patient’s weight to be supported and therefore, can help stabilise posture/balance, allowing better use of the muscles used to breathe.
Helping with anxiety and relaxation by means of psychological support, massage, aromatherapy and/or medication.
Using medications such as opioids or benzodiazepines to treat symptoms of breathlessness.
Opening a window or using a fan.
Managing fatigue. This might require referral to an occupational therapist.
Provision of ‘just in case’ medication. More about ‘just in case kit’ for MND
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
Healthcare professionals should provide opportunities to revisit patient’s wishes.
Healthcare professionals should support patients who decline NIV and discuss other treatment options available.