End of life care and withdrawal of NIV
Ethics and legalities surrounding the withdrawal of NIV
People living with motor neurone disease (MND), their family members and even healthcare professionals such as yourself may have concerns surrounding the ethics and legalities of withdrawing non-invasive ventilation (NIV).
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 MND.
If the patient chooses not to withdraw from the ventilation, their respiratory muscles will still continue to weaken, they will become dependent on using the ventilation and the ventilation will become less effective, failing to sustain life. Therefore, death is due to the nature of the disease with progressive weakening of the breathing muscles. Thus, the cause of death remains the advanced neurological disease.
It is important to understand the distinction between assisted death and stopping life-prolonging treatment and these can be important things to discuss with the patient and their family members as it can help them gain confidence in the team. It is important to reassure the patient and their family members that withdrawal of NIV is both ethical and legal.
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 that you respect the patient’s decision to withdraw treatment.
In the following video Matt Cox, an Extended Scope Respiratory Physiotherapist explains the importance of recognising that death is not caused by removing the ventilation and that healthcare professionals should not be forced to participate in the withdrawal if this would make them feel uncomfortable.
If you do not feel comfortable supporting a patient’s decision to withdraw NIV then 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.
The guidance from the General Medical Council stipulates that:
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)
Good practice points
Understand that withdrawal of NIV is ethical as the withdrawal of NIV does not cause the death of the patient but this is instead due to the weakening of the respiratory muscles as part of the disease progression.
The patient and their family members should be reassured that stopping NIV is ethical and legal.