Explaining death determined using neurological criteria to families

In 2013, in preparation for a pilot of a new national deceased donation simulation course for intensive care trainees, I emailed many colleagues in the UK to see if they were aware of any documents to help guide trainees in how to explain ‘brain death’ to families. Surprisingly, very little had been done in this area. This led to an email chain discussion from which the below was created.

There is no official validation of the below but it does reflect how I conceptually understand death determined using neurological criteria and how I approach communicating this to the families of patients under my care.

Explaining death determined using neurological criteria to families
(Actors representing family from the Nottingham Deceased Donation Course)

Essential message
• Death is suspected
• Tests to confirm death

Key points that are good to communicate
1. The brain injury is so severe that death is suspected to have already occurred
2. There is a plan to carry out a set of tests to see if the patient will ever regain any consciousness or ever breathe again.
3. If the tests confirm that these essential brain functions are permanently lost; this will mean the patient has died
4. The tests will be done carefully by two senior doctors
5. The tests will not hurt the patient
6. The tests will be done at the bedside by examining the patient and as part of the tests the patient will be removed from the breathing machine to see if the patient can breathe
7. The set of tests will be done twice
8. There is an opportunity for family to observe one of the tests if desired
9. If the tests do not show the presence of any of the essential brain functions, it will confirm that death has already occurred.

The order in which these key points is relayed will vary according to individual style and should be guided by paying careful attention to family reactions.

1. The essential message is the suspicion that death has already occurred and tests are going to be done to confirm this suspicion.
2. Avoids any mention of the confusing term ‘brainstem death’ or ‘brain death’ that is loosely used in the media and difficult conceptually to explain even for doctors. The Academy of Medical Royal Colleges (AoMRC) Code of Practice (2008) does not use either term but instead refers to the ‘Diagnosis and Confirmation of Death in a Patient in Coma.’
3. ‘Essential brain functions’ and the link to these being the capacity for consciousness and the capacity to breathe: this is in line with AoMRC, “Death entails the irreversible loss of those essential characteristics which are necessary to the existence of a living human person and, thus, the definition of death should be regarded as the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe.”
As a country that accepts brainstem death versus whole brain death, an emphasis on essential brain functions does not preclude that other brain functions may persist (eg anti-diuretic hormone production) just that these other brain functions are not essential for the capacity for consciousness or the capacity to breathe.
4. ‘Two senior doctor’ emphasises the importance in which the tests are being considered and the second opinion this brings.
5. Reassurance the tests will not hurt the patient. It is important the apnoea test is done last in any set of tests to ensure no brain stem reflexes are present before exposing the patient to a raised carbon dioxide level.
6. A short explanation of the tests with the emphasis on the apnoea test, which it is believed important in helping families understand and accept that death has occurred.
7. The tests will be done twice, again to emphasise the importance in which the tests are being considered.
8. An opportunity to witness the tests is provided. It is believed that witnessing the tests may be helpful in helping families understand and accept that death has occurred. It also encourages trust. It is usually best to let the family observe the second set of tests, as this enable the doctors to carry out the first set with less distraction, when reflexes are more likely to be present.

Other information that could be relayed in on-going discussion with the family
a. Consciousness as arousal / wakefulness and awareness (thoughts and feelings)
b. She will never wake up and never recover
c. It’s only the machine that is breathing for the patient and only because of the breathing machine is the heart still beating. Were we to turn off the breathing machine the patient would not breathe and the heart would stop.
d. No one who has had these tests performed correctly has ever woken up or breathed again anywhere in the world
e. Media reports are usually mistaken or the tests were done incorrectly
f. Persistent vegetative states and deep coma are different conditions
g. The anatomical location of these essential functions is in the brainstem, where the cranial nerves also arise. Which is why examination of the brainstem reflexes allows conclusions about these essential functions to be made.
h. Spinal reflexes may be present, as the spinal cord is not usually damaged.
i. Acknowledging that what is being described is commonly referred to as brainstem dead or brain dead; but often this term is used wrongly in the media.
j. Showing the CT scans and the use of other visual aids

An example
Accepting that individual styles may vary and rote quoting of any text would appear forced and unnatural, the below paragraph is offered. It is vital that family reaction and understanding is assessed as the information is relayed, and if there are points of confusion or distress, or the information is too overwhelming, that further explanation or time is given before proceeding.

The imagined case is for Margaret a middle-aged woman who had an overwhelming subarachnoid haemorrhage, who is in intensive care awaiting testing.

"As you know Margaret has had a very bad bleed in her brain. As you saw, she lost consciousness almost immediately and the paramedics had to put the breathing tube in because she was no longer breathing for herself. Since coming to hospital we have not seen her breathe and many of her brain functions appear to have ceased.

The scan of her brain is very abnormal and devastating. My fear is that the damage Margaret has sustained to her brain, is so severe, that she may have already died.

Another senior doctor and I are planning to carry out some tests on Margaret to see if she will ever regain any consciousness or ever breathe again. If the tests confirm that these essential brain functions are permanently lost, this will confirm to us, that she has died.

The tests won't hurt Margaret. One of these tests will be to shine a light in her eyes to see if her pupil gets smaller, much as the nurses have already been doing on the intensive care. We will also take her off the ventilator to see if she can breathe by herself.

The tests will be done twice. We’ll do the first set of tests shortly but we’ll give you the chance to watch the second set of tests if you wish. Some families find this helpful, to see for themselves.

I’m very sorry; but I expect the tests will confirm that she has already died.’