End of life care and withdrawal of NIV
Discussing the patient’s choice to continue or withdraw NIV
The patient’s breathing will become worse, which may result in them becoming dependent on using the ventilation and it becoming less effective.
It is clear from evidence that withdrawing non-invasive ventilation is a rare event. However, it is important that you discuss the different options with people living with motor neurone disease (MND) so they can plan how to manage their breathing at the end of life early on.
The patient should be made aware when starting NIV that they can stop using NIV at any time. They should be reassured that in the UK and many other countries this is ethical and legal, and that healthcare professionals will support them. They should also be made aware of the limitations of NIV and how their use might change with disease progression.
If the patient agrees, it is important to involve the patient’s family members in the discussions so they can raise any concerns. Whilst having these discussions, the patient and their family members should be given the opportunity to discuss possible future scenarios, for example becoming 24-hour dependent.
In this video Matt Cox, an Extended Scope Respiratory Physiotherapist, describes the challenges of discussing the withdrawal of NIV and end of life, as well as the need to provide early and regular opportunities for discussions.
“It's important to make sure that the carers recognise that it’s the patient’s decision to make and that it’s our role to support the patient in making that decision.”
Matt Cox , Extended Scope Respiratory Physiotherapist, Sheffield Teaching Hospitals NHS Foundation Trust
Withdrawal can be a difficult thing for patients and healthcare professionals to talk about. Ideally the professionals who have these discussions with patients will have knowledge and experience in stopping NIV, and understand the ethical and legal principles surrounding withdrawal.
However all professionals can help the patient explore their concerns, fears and options, even if they have no experience in withdrawal. Showing willingness to have these conversations, recognising uncertainty and respecting patient’s feelings and ultimate decision will help these discussions. You should provide regular opportunities for these discussions so you can revisit the patient’s wishes as their choice to continue or withdraw NIV might change.
Involving palliative care services early in the disease opportunities for experts in withdrawal to build a rapport with patients and their family members. Your multidisciplinary team may find it useful to nominate a key worker in the team to have the role of ensuing that discussions about withdrawal and end of life have happened. This helps to ensure that the patient can plan ahead.
“I tell patients that they can talk about anything with me. Patients often worry that they aren’t allowed to talk about death or NIV withdrawal. Sometimes I’ll say I’m not sure what the answer is and ask permission to seek help from the other members of the MDT. I think this reassures them that they have a safe place to talk to someone who respects their views.”
Esther Hobson, Consultant neurologist, Sheffield Teaching Hospitals NHS Foundation Trust
Good practice points
The patient should be reassured that stopping NIV is ethical and legal.
The patient’s decision not to talk about the withdrawal of NIV should be respected.
Professionals should show willingness to have conversations about end of life and provide regular opportunities for revisiting the patient’s wishes.
Should involve palliative care early.
Nominating a key worker in the multidisciplinary team to have the role of ensuring that discussions about withdrawal and end of life have occurred.