End of life care and withdrawal of NIV


When should discussions about the withdrawal of NIV and end of life begin?

Patients should be made aware when starting NIV that they can stop using NIV at any time. Discussions about withdrawal and end of life should be part of a process. This involves having regular discussions about end of life as the patient’s wishes might change so it is important to revisit them.

When discussing the process of withdrawal, it is important that two senior healthcare professionals are involved and that the discussion occurs on at least two separate occasions.

What should early discussions about the withdrawal of NIV and end of life include?

Discussions about end of life should include the patient’s decision to continue or withdraw NIV. If the patient agrees, involve the patient’s family members in the discussions so they can raise any concerns.

Patients and their family members should be reassured that withdrawal of NIV is ethical and legal, and that healthcare professionals will support them. An example of how this discussion may be introduced at initiation of NIV is:

‘You can stop this treatment at any time you want to. If you are using it a lot you may want some help to manage any problems such as increased breathlessness that may occur when you stop it.’

What should I do if the patient does not want to discuss the withdrawal of NIV and end of life?

It is important that you respect the patient’s decision not to talk about withdrawal or end of life. These are highly emotional and sensitive topics and some patients do not want to discuss them. However, it is crucial that you show willingness to have these conversations and provide regular opportunities to open up conversations about them in order to review and re-discuss the patient’s wishes.

My patient’s family member is concerned about the ethics and legalities of withdrawing NIV. What should I do?

It is important that you anticipate the difficulty and impact that decision-making surrounding withdrawal of NIV can have on the patient and their family members, and you should explore their concerns and expectations. It is important that you reassure the patient and their family members that withdrawal of NIV is both ethical and legal.

The distinction between assisted death and stopping life-prolonging treatment can be important to discuss and can help the patient and their family members to gain confidence in the team. The MND Association provides useful information resources surrounding withdrawal which the family member might find helpful.

I do not feel comfortable talking about the withdrawal of NIV, as I feel it is unethical and has legal implications. What should I do?

Many people are concerned that the removal of NIV causes the death of the patient as there is often a short time period between the withdrawal of NIV and death. However, it is important to understand that death following withdrawal from NIV is not due to the removal of the ventilation but instead due to the motor neurone disease (MND).

Therefore, the cause of death remains the advanced neurological disease. As stated in the Association for Palliative Medicine’s position statement on the withdrawal of ventilatory support at the request of an adult patient with advanced neuromuscular disease (PDF, 1.3MB):

In UK law, a refusal of a medical treatment by a patient who has capacity for that decision, must be respected and complied with, even if to comply with this refusal could lead to significant harm to the patient, including to their death. To continue medical treatments that a patient does not want is to give treatment without consent, and legally constitutes a criminal offence of battery or a tort in civil law, justifying financial compensation…

Withdrawing a medical treatment that a patient with capacity no longer wants, even if this is considered life-­sustaining, is not assisted suicide. (APM 2015)

Therefore, it is important to respect the patient’s wishes. However, as stated in the guidance from the General Medical Council:

You can withdraw from providing care if your religious, moral or other personal beliefs about providing life-prolonging treatment lead you to object to complying with

(a) a patient’s decision to refuse such treatment, or

(b) a decision that providing such treatment is not of overall benefit to a patient who lacks capacity to decide.

However, you must not do so without first ensuring that arrangements have been made for another doctor to take over your role. It is not acceptable to withdraw from a patient’s care if this would leave the patient or colleagues with nowhere to turn. (GMC, 2010)

Therefore, you are able to withdraw from the patient’s care as long as you ensure that the patient is referred to another healthcare professional to take on the role.

I do not feel able to support the withdrawal of NIV, as it does not fit with my religious beliefs. What should I do?

See the General Medical Council’s guidance in the answer above.