End of life care and withdrawal of NIV

Decision making and advanced care planning

If a patient expresses a desire to withdraw there are several steps to take to ensure that this is the the right decision for them. This might also involve making or reviewing their advanced care plan.

In the following video, Julie and her son Russ talk about their decision for Julie to withdraw from non-invasive ventilation (NIV).

Like the decision to commence NIV, a decision to withdraw should be a process made together with patients, family members and their healthcare team over time. The clinician must assess whether the patient has the capacity to make informed decisions and ensure that this is their firmly held belief.

Assessing capacity

Capacity refers to a person’s ability to understand and retain sufficient information to make an informed decision and to be able to communicate any decisions that they make.

Most patients with motor neurone disease (MND) retain capacity to make decisions but cognitive impairment, communication difficulties, fatigue, emotional distress and physical symptoms may also hinder decision making. Consider involving other professionals including speech and language therapists and psychologists in this process, particularly if capacity is felt to be impaired.

To ensure the patient has capacity and that this is their firmly held belief, withdrawal should be discussed on at least two separate occasions and ideally involve two different senior healthcare professionals. An experienced member of team, usually a palliative care or respiratory consultant, should validate the patient’s decision to withdraw NIV and lead on the withdrawal.

At times, the patient and their family members may disagree. In this circumstance, it is advised that you seek medico-legal support and guidance.

It is important to clearly document the rationale for the decision to withdraw NIV and the process for the evaluation of the decision. This may include the following:

Who made the decision
What evidence was considered (including consideration of validity and applicability of ADRT)
Who was involved in discussions
That alternative approaches are known and rejected by the patient
That the patient knows they will die as a consequence of withdrawal
That there is no coercion, nor is the decision driven by mistaken kindness to the family
That this a settled view of the patient
Capacity assessment
Summary of the benefits and burdens (if applicable)
Statement of best interests (if applicable)

When patients do not have capacity to decide

It is unusual for patients with MND to lose capacity but there are often times when the patient may not be able to fully participate in this process. Capacity is decision specific which means patients may retain the capacity to make some decisions even if others must be made in their best interests. If the patient lacks capacity, they must check if an ADRT has been completed and that it is valid and applicable.

In the following video, Matt Cox, an Extended Scope Respiratory Physiotherapist discusses how he manages patients who are unable to communicate their wishes.

Advanced care planning

It is important to promote advance care planning early on. This allows patients to discuss their beliefs, goals and fears and develop their views. An advance care plan is not legally binding but provides an outline of what the patient’s wishes and choices are about their care and treatment. This is a useful guide for the patient’s family members and their care team.

This may not result in an advance decision to refuse (ADRT) that is legally binding but would be helpful in reaching a best interests decision in the event of a loss of capacity. Advance care planning is particularly important for patients who have lost one modality of communication or are showing signs of cognitive decline.

Resources to support your involvement in end of life care

Good practice points

Continuous discussions over time will allow the patient to explore their options and the MDT to assess the patient’s capacity to make the decision to withdraw and ensure that it is their firmly held belief.
Open and honest discussions can be held by all members of the team.
The ultimate decision should be assessed by an experienced member of the team based on discussions held over at least two occasions.
Clear documentation of the rationale for the decision to withdraw NIV and the process for the evaluation of the decision should be made.
Advanced care planning can support decision making.