In 1959, shortly after the invention of positive pressure ventilation, Pierre Mollaret and Maurice Goulon published the first description of what would eventually be referred to as “brain death” in their manuscript “Le Coma Depassé.”1,2 Nearly a decade later, a committee commissioned by Harvard Medical School expanded on Mollaret and Goulon’s work and described their acceptance of the use of neurologic criteria to declare death when a person is unreceptive and unresponsive, does not move or breathe, has absent reflexes, and has an isoelectric electroencephalogram.2,3 In the ensuing 50 years, the use of neurologic criteria to declare death has become medically and legally accepted as death throughout much of the world.4,5
In 1959, shortly after the invention of positive pressure ventilation, Pierre Mollaret and Maurice Goulon published the first description of what would eventually be referred to as “brain death” in their manuscript “Le Coma Depassé.”1, 2 Nearly a decade later, a committee commissioned by Harvard Medical School expanded on Mollaret and Goulon’s work and described their acceptance of the use of neurologic criteria to declare death when a person is unreceptive and unresponsive, does not move or breathe, has absent reflexes, and has an isoelectric electroencephalogram.2, 3 In the ensuing 50 years, the use of neurologic criteria to declare death has become medically and legally accepted as death throughout much of the world.4, 5
Despite this, many people do not understand the concept of brain death, and among those who understand it, some object to it.6–8 This confusion can largely be attributed to the fact that most knowledge the public has about brain death comes from television, movies, and media, all of which can be misleading, at best, or grossly inaccurate, at worst.9–11 There are also varying religious perspectives on brain death, some of which prompt objections to the use of neurologic criteria to declare death.12–18 These factors can make communication about brain death challenging.
Here, as a final Chapter for this book that covers a wide variety of potentially challenging discussions with families, we tackle one of the most difficult. We provide data on how well providers communicate about brain death, review strategies to discuss brain death, address objections to brain death, then close by briefly discussing organ donation after brain death. Of note, although it is beyond the scope of this Chapter, we remind the reader that, when thinking about brain death, it is imperative that providers (1) review the guidelines for brain death determination, (2) consider pitfalls in brain death determination, including brain death mimics, and (3) familiarize themselves with local laws about brain death.
20.1 Data on the Effectiveness of Communication About Brain Death
The subject of brain death is arguably one of the most difficult topics for health-care providers to discuss with a patient’s family, given poor public understanding of the topic and lack of guidance for healthcare providers on how to approach these discussions.10 In a review of brain death protocols from around the world, Lewis et al. discovered that only 36% of protocols addressed the need to communicate with a patient’s family prior to declaration of brain death and only 12% noted the importance of communicating with a patient’s family prior to discontinuation of organ support.19
A discussion of the ideal ways to communicate about brain death is important because studies have shown that health-care providers sometimes fail to adequately educate family members about this complicated topic.20 In a study by the National Kidney Foundation, nearly one-third of donor family members of brain dead patients wished they were told more information about brain death.21 Savaria et al found that 15% of donor family members did not have a clear understanding of brain death.22 In interviews of the immediate next of kin of 164 medically suitable organ donor candidates, 39% of respondents said brain death was not explained to them and 20% did not understand that brain death is irreversible.21
20.2 Communicating About Brain Death
The fact that some families are inadequately educated about brain death is reflective of the fact that discussing brain death with a person’s family can be an incredibly difficult task for health-care providers. Who should discuss brain death, what should be said, when should it be said, where should it be said, and how should the conversation be structured?17 We dissect the answers to these questions herein (Tables 20.1 and 20.2).
|Review imaging of the patient’s brain and explain what is abnormal|
|Allow families to observe your examination, explain your findings, and describe how they compare to normal findings|
|Begin education about the possibility of progression to brain death early when it is clear there has been a devastating neurologic injury|
|Ensure that the entire medical team understands the implications of the brain death examination so that information given to the family is consistent|
|Involve ethics, palliative care, social work, psychology, hospital chaplaincy, and/or a spiritual guide early in the admission|
|Provide frequent education and reeducation about brain death including details on the examination, the possibility of spinal reflexes, the legal implications of declaration of brain death, and the discontinuation of organ support after declaration of brain death|
|Communicate candidly and patiently|
|Establish a bond of trust with the family|
|Express sadness and empathize with the family’s disbelief and grief|
|Use consistent terminology and layman’s terms|
|Allow family to gather and perform religious rituals prior to the confirmatory examination|
|After declaration, use the term “death” not “brain death” to avoid being unclear|
|“Brain death represents a devastating and irreversible neurologic injury incompatible with return of consciousness.”|
|“I truly wish recovery were possible.”|
|“This situation is terrible and I know that it happened very suddenly, which makes it even more stressful.”|
|“We will do all we can, but in some cases, even when we do everything, a person dies.’”|
|“We need to ask – ‘Who was this person before the accident?’ Then explain, ‘Based on our neurologic exam and tests, we have found that this person’s brain has no function, and therefore, they have died. We can support their organs with these machines and medicines, but they have died. They will not wake up. The person you knew is gone.’”|
|“The only good thing here is that they are not experiencing any pain or discomfort. They are not suffering.”|
|“The assessment is very detailed, so we can carefully evaluate for any evidence of brain activity. If there is any activity at all, that means they are still alive, but if there is no activity, that means they are dead.”|
|“The point of the apnea test is to test the lowest portion of the brain. This part of the brain should trigger the lungs to breathe as carbon dioxide rises in the body. If this does not happen, it means that even the base of the brain is not working at all.”|
|“Even though the brain is not working, there can sometimes still be reflexive movements due to activity from the spinal cord, the nerves, or the muscles. Although these are connected to the brain, and usually receive messages from the brain, they can send messages, sometimes, even when the brain isn’t working. Movements that are coming from the brain are different from movements being triggered by the spinal cord, nerves, or muscles.”|
20.2.1 Who Should Be Involved in Discussions About Brain Death?
Providers should ensure that all members of the care team (clinicians, nurses, therapists, social workers, case managers, and patient care technicians) have a proper understanding of brain death and are aware of the potential for a brain death evaluation so that families are provided with consistent information. Providers who have a close therapeutic relationship with the family should introduce brain death in conjunction with consultants who are involved in brain death determination. Palliative care consultation should be considered, because they can offer an additional support system for families both during hospitalization and after discharge.
20.2.2 What Should Providers Tell Families About Brain Death?
Providers should begin discussions about brain death by informing a person’s family that they suffered a catastrophic brain injury. They should disclose the etiology for this injury and demonstrate the extent of the injury on brain imaging. Additionally, they should both explain and demonstrate the neurologic examination before talking about brain death.
After establishing that an injury is severe and irreversible, providers should tell families that there are two types of death that are legally equivalent: (1) cardiopulmonary (traditional) death, which occurs when the heart and lungs stop working, and (2) brain death, which occurs when the entire brain stops working. They should further explain that when a person is brain dead, their heart and lungs only continue to function with the support of machines. Providers should then review their concerns that, in this case, the brain injury may be severe enough to cause brain death, but that a formal, thorough evaluation is necessary to meticulously assess for any signs of brain function.
Next, providers should describe the steps of the determination. They should begin by reviewing the prerequisites and the clinical examination in detail. It should be explained that any sign of brain activity during the assessment indicates that a person is alive, but if there is no sign of brain activity during a clinical examination, the next step would be to perform apnea testing. When describing apnea testing, it is important for providers to reiterate that if a person takes a single breath, testing is aborted, because this demonstrates life, and if a person shows any signs of instability during the assessment, the ventilator is reconnected. Providers must explain that, during this period, the carbon dioxide in a person’s body increases, and that if the base of the brain is working, this should trigger them to breathe. Families should be prepared for the potential for spinal reflexes and should be told that even when the brain is not working, the spine, muscles, and nerves can still show some activity. Additionally, providers should address the known or potential need for ancillary testing. Finally, providers should explain that if the clinical examination, apnea test, and ancillary test (if performed) reveal no signs of brain function, death will be declared, and that this will be the legal equivalence to cessation of the heart and lungs. Providers should disclose that, if a person is found to be brain dead, organ support will be discontinued.
Providers should invite families to observe brain death determination, as a recent randomized controlled trial suggested that this may improve understanding of brain death.1, 23 Importantly, this study demonstrated there was no apparent adverse effect of observing the determination on the psychological well-being of families. Providers should clearly explain the assessment and their findings during the assessment, if families are present, or after the assessment, if they are not.
20.2.3 When Should Providers Discuss Brain Death?
We recommend introducing the concept of brain death soon after it is evident that a person has suffered a catastrophic brain injury, if it is anticipated that they may progress to brain death. Although it may seem uncomfortable to discuss brain death shortly after meeting a family, it is best to prepare them and not delay the discussion. A lack of preparedness is associated with worse outcomes for families.24 It is helpful to provide families with a general timeline of when the team plans to perform the neurologic exam, apnea testing, and ancillary testing (if applicable), so they can set their expectations accordingly and coordinate arrangements for other family members or religious advisors to be present. Within reason, providers should be somewhat flexible when discussing this timeline; this gives families an opportunity to accept the situation and allows additional family members to come to the hospital before the brain death determination.
Although we discuss this further, it is worth noting that we strongly recommend against introducing the concept of organ donation during early discussions about brain death. It is best to delay discussion of organ donation until a designated organ procurement representative is present to discuss donation.
20.2.4 Where Should Discussions About Brain Death Take Place?
Providers should ask families where they prefer to discuss prognosis. Some families may wish to stay at the bedside, whereas others may prefer to meet in a private conference room. Please refer to Chapter 4, “Communication Skills for Critical Care Family Meetings” for additional details regarding family meeting organization.
20.2.5 How Should Discussions About Brain Death Be Structured?
There is an abundance of literature describing effective communication techniques when delivering bad news, as discussed throughout this text, all of which are applicable to discussions about brain death. Three commonly used techniques include (1) SPIKES (Setup (prepare the room), Perception (determine what is known), Invitation (ask if one can discuss the planned topic), Knowledge (give knowledge clearly and unequivocally), Emotions (address and emphasize), Summarize the plan); (2) NURSE (Name the problem or emotion, Understand the origin of the issue, Respect (both verbal and nonverbal), Support, Explore the feeling); and (3) Ask–Tell–Ask25 (see Chapter 4, “Communication Skills for Critical Care Family Meetings.”)
Trevick et al. recommend a seven-step approach to communication with relatives of persons who may become brain dead.24 The goal of this approach is to allow for an open line of communication and provide information in a timely manner. First, they recommend that providers (1) begin communicating with a person’s relatives early, (2) explain the severity and nature of the injury, and (3) indicate that prognosis is definitively poor. Second, as a patient deteriorates, they advise that providers discuss the possibility of loss of all brain function. Third, they encourage providers to review the events that led to admission, summarize events to date, and communicate likelihood of brain death. Fourth, they advise providers to explain that brain death indicates death of a person and that a person who is brain dead is legally dead, and recommend avoidance of unclear phrases like “passed away” or “moved on.” Fifth, they suggest providers ensure a family has adequate time to digest this information. Sixth, they instruct providers to facilitate discussions about organ donation with an organ procurement team. Last, they advise that providers offer families the opportunity to contact the intensive care unit team or organ procurement team after death with or without organ donation, as confusion, questions, and doubts may arise in the weeks or, even, months after death.