Brain death and the brain death protocol: diligence first

Archie Battersbee case

The case of 12-year-old Archie from England is a good example of the unrest that can arise. Archie was admitted to the hospital in April 2022 with severe brain injury. After an extensive medical examination, the doctors concluded that his situation was hopeless. They therefore wanted to stop his treatment.

His family did not agree with this. This led to a long legal battle, in which the determination of brain death was also part of the discussion. After four months, the judge decided that the treatment could be stopped. This happened in August 2022. The Archie case also led to confusion in the Dutch media regarding the concept of brain death among both the public and medical professionals.

Brain death and organ donation

Organ donation was not an issue in the case of Archie Battersbee. The reason the doctors wanted to determine brain death in his case was solely to be able to stop his treatment. This is exceptional. In 99.9% of cases where the brain death protocol is applied, it is in the context of a potential organ donation.

Neurologist-intensivist Michael Kuiper (Medisch Centrum Leeuwarden): 'These are patients with severe brain injury due to, for example, a brain hemorrhage, an accident, or oxygen deprivation after resuscitation. They are in the intensive care unit and are being mechanically ventilated. If doctors no longer see any possibility for recovery in these patients, there is a hopeless prognosis. This situation is discussed with the family. If the doctors think the patient may be brain dead, then'they consult the Donor Register. Upon consent for organ donation, they start the brain death protocol in consultation with the family. If, after fully completing this protocol, it appears that the patient is indeed brain dead, preparations for an organ donation procedure are started. This is called organ donation after brain death, also known as Donation after Brain Death (DBD).'

'Brain death is defined as the complete and irreversible loss of brain functions, including the brainstem and the medulla oblongata.'

Various medical specialists involved

The brain death protocol is carried out very carefully. Neurologist Rob Rouhl (Maastricht UMC+): 'The various parts of the protocol are all performed by medical specialists with specific expertise. For example, a (pediatric) neurologist performs the clinical neurological examination and a clinical neurophysiologist performs the EEG. For a TCD or CTA, a clinical neurophysiologist and neuroradiologist are involved, respectively. The apnea test is usually performed by an intensivist, anesthesiologist, or pulmonologist.'

Ensuring full execution of the protocol

'In addition, there is a legally established form that ensures all steps of the protocol are fully completed. Only when the entire brain death protocol has been completed and all criteria have been met does the neurologist declare at the end of this form the date and time that brain death was established. This is the moment of death, both medically and legally.'

Points of attention

Kuiper points out a number of points of attention in the protocol. 'An important point is that the cause of brain death is clear. Also, any neurodepressive medication must have sufficiently worn off before starting the protocol.'

'Another point of attention is the presence of spinal reflexes. Rouhl: 'Even after death, various movements have been described in brain-dead patients. For example, of the arms or legs. Although the patient has died and there is no longer any brain activity, there is still perfusion of all other organs and the spinal cord. Reflexes, so-called spinal reflexes, still run through the spinal cord. The movement of an arm or leg after stimulation is a spinal reflex and not a reaction from the brainstem. It is good for doctors and relatives to know that this can happen, but that it does not indicate reactions from the brain.'

Brain death and moment of death

As mentioned earlier, the moment at which brain death is established based on the brain death protocol is the moment of death, both medically and legally. This is different if a patient dies after the withdrawal of treatment, as is the case, for example, with organ donation after circulatory arrest (Donation after Circulatory Death or DCD). At that moment, blood circulation also stops.

In brain-dead patients, circulation continues as long as the deceased remains on a ventilator. Rouhl: 'At the moment that relatives say goodbye to a deceased (brain-dead) patient, the deceased still feels warm and is being ventilated. That goes against one's intuition. This may be a reason why confusion sometimes arises about whether a brain-dead patient has actually died.'

Incorrect use of the term brain death

It is important to use the term brain death carefully. Some of the confusion surrounding brain death and death may arise from the incorrect use of this term. For example, there are situations in which people are said to be brain-dead, but recover after a while and therefore have not actually died.

Kuiper conducted research into these situations. 'In all the cases I investigated, there was no actual brain death and there was a clear explanation for the fact that the people showed some recovery. For example, the term brain death was often used incorrectly, for instance at a time when the brain death protocol had not yet been carried out at all. Or the brain death protocol was carried out while the preliminary conditions had not been met, for example because there was no clear reason known for the brain injury or because there was an intoxication.'

Carefulness and certainty

All in all, Kuiper and Rouhl conclude that the brain death protocol in the Netherlands is put together very carefully. Rouhl: ‘This protocol has been well thought out. If you follow it accurately step by step, you can determine with certainty that someone is brain dead and therefore deceased. You can rely on that.’