The withdrawal of non-invasive ventilation in palliative care patients: A report of seven cases with recommendations

Dyspnoea is one of the most distressing symptoms encountered in palliative care. For patients with intractable dyspnoea, endotracheal intubation is very rarely utilised, but non-invasive ventilation [NIV] using a tightly fitting face mask is occasionally used. The commonest indications are motor neurone disease and primary lung disease. Major difficulties can arise if the patient decides that the burden of ventilation exceeds the benefit, and requests its withdrawal. This is a rare, difficult situation. A literature search identified no published protocols. After the complex ethical and legal issues have been resolved, the process of withdrawing NIV remains a clinical challenge. The goal is to provide just enough sedation to allow a gentle death, free of dyspnoea, after the mask is removed. If sedation is excessive, sudden death may occur, creating the impression of a deliberate act of euthanasia. If sedation is inadequate, the patient may show signs of respiratory distress, causing great upset to family and staff.

This report describes seven cases, over a period often years, in which NIV was withdrawn. The lessons learned from each case are described in some detail. Valuable advice was also obtained from the Bulletin Board of Palltativedrugs.com1. Responses were received from 12 individuals [10 doctors, one nurse and one pharmacist] from six countries [UK, USA, Canada, Germany, Malaysia and Australia].

After experience with six patients a protocol was devised. This protocol was followed in the seventh case, with very satisfactory results.

The protocol describes three stages: preparation [covering legal and ethical issues, discussing with patient and family, warning that death may not occur until 12 to 24 hours after removal of NIV]; the procedure for NIV removal [commence the sedation early in the morning, use the intravenous route, use a combination of opioid and benzodiazepine]; and follow up bereavement support for the family and staff.