End of life care and withdrawal of NIV

Planning the withdrawal of NIV

An experienced member of the respiratory team or a palliative care consultant should validate the patient’s decision to withdraw non-invasive ventilation (NIV) and lead on the withdrawal.

This person should discuss the process of withdrawal with other healthcare professionals in the multidisciplinary team. They should identify key people to be involved in the withdrawal of NIV and their roles, and ensure that they understand the ethical and legal principles surrounding withdrawal.

When planning the withdrawal of NIV you must take an individualised approach, as patients will often have different wishes. Unless the patient has specified a later date, withdrawal should be undertaken within a reasonable timeframe after a request to withdraw NIV has been validated. There may be slight delays due to professional availability but this should not be longer than a few days and should be communicated with the patient and their family members.

Many patients will have had open discussions about their wishes for some time, with many creating an advance care plan outlining their wishes. However, this is not always the case. It is important that a member of the team is nominated to coordinate the process to ensure that all elements of withdrawal are well-planned including

identification of roles and responsibilities of people involved in the withdrawal of NIV,
where the withdrawal will take place,
when the withdrawal of NIV will take place and what will be done in practical terms,
completion of the audit after the patient has died.

A minimum of three people are needed to be at the withdrawal of NIV because one person is needed to manage the ventilator, one person is needed to manage the symptoms and one person should be present to support the family. It is vital that symptoms such as breathlessness and distress are anticipated, planned and effectively managed.

For patients who are likely to need rapid adjustment to symptom management, for example those dependent on NIV, a doctor should be present for the entire time.

“I feel totally reassured that the process will be painless, comfortable, relatively quick, and I totally have trust in the people, in the team that will do that.”

Julie, person living with MND

Communication is paramount for planning the withdrawal of NIV. The discussion should, with due respect to confidentiality, also be had with the patient’s family members. This should also be guided by the patient as to what detail they would like to know.

In the following video Matt Cox, an Extended Scope Respiratory Physiotherapist outlines what should be thought about and discussed with the patient and their family members when planning the withdrawal of NIV. This includes:

Where the patient wishes to be during the withdrawal of NIV
Timing of withdrawal
The physiological changes that may happen
Symptom control
Mechanics of withdrawal including who will do what
What will happen once the mask/ventilation has been removed
Address fears about distress
What additional professional support may be needed
Who the patient would like present at the withdrawal
What role family members may wish to have

When planning the withdrawal of NIV, it is also important to plan who will provide support for the family members following the death of the patient.

Detailed information concerning the planning of withdrawal of NIV

Good practice points

The person leading on the withdrawal should discuss the process of withdrawal with other healthcare professionals in the multidisciplinary team.
Withdrawal should be undertaken within a reasonable timeframe.
Nominate a person to coordinate the process to ensure that all elements of withdrawal are well-planned.
A minimum of three people are needed to be at the withdrawal of NIV.
Anticipate and plan management of symptoms such as breathlessness and distress.
Have detailed discussions with the patient and their family members about the withdrawal of NIV including when, where and how it will take place.
Plan who will provide support for the family members following the death of the patient.