How do you want to respond if your loved one is considered brain dead? 

If you read this article after being told that your loved one is probably brain dead, I offer my greatest sympathy, because the prognosis is generally very poor. Moreover, it usually happens as a result of catastrophic brain damage, such as unexpected head injury, massive brain hemorrhage, and prolonged lack of oxygen after sudden cardiac arrest. Most people are not prepared to fully comprehend this condition. Here I will briefly outline important points that you need to remember when dealing with the medical team.

Brain death is a brain state in which the function of the entire brain including the brainstem has irreversibly ceased. (Uniform Determination of Death Act 1980) While it will take one book, even in layperson’s terms, to explain what brain death is, what it means to your loved one, and how it became a legal definition of death, important points pertinent to your important decision are provided here. 

Brain death is a newly created category of human death, which evolved over two decades in the 1960s and 70s. As resuscitative technologies (or life-sustaining treatments) advanced, people with devastating brain injuries (mostly due to trauma, stroke, and a lack of oxygen) became survivable thanks to ventilators and other life-sustaining technologies. Over these decades, it became clear that among those people, while many of them recovered, some of them never regained consciousness even when their hearts continued to function and breathing was maintained by the ventilator. These patients raised a serious question if such an existence constitutes human life or it is equivalent to the end of human existence, or simply death. 

The other important historical development that was evolving almost in parallel in the 1960s and 70s is organ transplantation technologies. Because the organs to be transplanted need to be as fresh as possible, a state of brain death was considered ideal because the brain is dead, but the body in which transplantable organs are located is not yet dead. It seemed logical to have these two new emerging technologies tie together. Because transplantation medicine was rapidly evolving in the 1960s and 70s, there was an urgent need to legalize brain death as human death so that organs are taken out from a dead donor, not from a living donor whose brain was irreversibly damaged. There was a great concern that removing the still-beating heart from the donor killed the donor. It was necessary to define such donors as already dead before removing organs. That was about the time the Presidential Commission in 1981 concluded by a majority opinion that brain death is equivalent to human death. They decided that it is no different from traditional death judged by the absence of spontaneous breathing, heartbeat, and the papillary reflex. 

Over the past three decades, brain death became a critically important condition for two reasons: indispensable source of transplantation organs, and stopping prolonged intensive life-sustaining treatment. 

Brain death results from severe and extensive damage to the brain. When the damage is so severe and extensive, the entire brain swells up and chokes up its own blood circulation because the pressure inside the head exceeds the pressure with which the heart can send the blood to the brain. The brain is an organ that is very susceptible to the lack of blood and oxygen supply. When this "choked up" condition lasts more than several minutes, the brain tissue starts dying out. When the death of the brain tissue reaches the entire brain, brain death ensues. As mentioned above, brain death is defined as "irreversible" "cessation" of "the entire brain including the brainstem". These three words or phrases have critically important meanings behind them. 

Irreversibility 

This is probably one of the greatest concerns for the family. How do we know for sure that the damage is not recoverable, at least partially? The answer usually comes from historical analysis. None of the cases that were properly diagnosed as brain dead ever recovered consciousness. However, there have been a number of cases whose body survived for weeks to months, and sometimes years, usually with ventilator support. Do those people survive without any brain function? We will come back to this important question later. 

Cessation

The concept of cessation is closely related to its irreversibility. Many organs under disease conditions stop functioning, but they sometimes recover when the disease that causes the cessation is treated. The kidney, the liver, and even the heart can cease to function temporarily under certain disease conditions. They often recover at least partially. Why does the brain not do the same? This is also one of the most important questions, which I will discuss later along with irreversibility. 

The entire brain including the brainstem 

Because the brain is a large organ that is differentiated into many different functions in different parts, it is rare that the entire brain is at once totally destroyed. If you excuse me for using a gruesome example, decapitation using a guillotine is the closest you could imagine. Does such a situation really happen in clinical medicine? In reality, physicians examine only representative brain functions of the brain stem. First, physicians examine all cranial nerves that originate in the brainstem.  Next, they perform an apnea test that proves the absence of the brainstem function to initiate breathing movement. 

What about the rest of the brain? Compared with the brainstem, the rest of the brain (cerebrum and cerebellum) constitutes 98% of the brain volume. There are several different methods, but they are examining only a limited function of the entire brain. The crudest but most widely used method is whether the patient can respond to deep pain. If there is no withdrawal of hand or grimacing, it is concluded that the patient is in a deep coma and the rest of the brain (98%) is entirely dead. Another method is to use electric activity (electroencephalography), and another is to use a blood circulation test. If there is no electric activity from the brain, or if there is no detectable blood circulation in the brain, these findings are interpreted as proof that the entire brain ceased to function. Critics have argued that such crude sampling would miss some surviving brain tissues, which could survive and regain some function if the body survives. In the UK, in order to avoid such difficulties, brain death is called brainstem death. They don't claim that the entire brain is dead, and that is sufficient to call the person dead. 

So far, you may find puzzling and even mysterious about what is known (and not known) to be happening in the brain when brain death is suspected. But a bigger question is: why is this brain state the same as human death? And you are not the only one. Numerous authors, commentators, and critics have raised questions and serious concerns, and this debate never ceases. In some jurisdictions, such as Japan, it took almost two more decades before the law recognized brain death as human death in selected organ donors. In this author’s view, the best answer to the why question is this: brain death is human death because the legislators of each jurisdiction chose to decide that way. And as exemplified by the history of Japanese brain death legislation, the reason for such a choice is the need to procure organs for rapidly growing organ transplantation. 

One common misunderstanding of brain death is that there is some scientific proof that it is human death, and most patients and families simply do not understand the meaning of brain death because they cannot understand the science behind brain death. The reason for such misunderstanding is partly due to the theory that was promulgated around the time that brain death was legalized in the 1980s. Often referred to as “somatic integration theory”, the rationale to equate brain death with human death is based on the theory that the brain is the integrating organ of all the organs in the body. If the brain stops functioning, all remaining organs such as the heart, lungs, kidneys, etc cannot function as an integrated whole. In other words, the brain is the necessary organ for a human organism as a whole to survive.  This theory has been shown to be false by empirical observations of brain-dead bodies, and a President Council in 2009 abandoned this theoretical defense. 

To be clear, there is no question that the brain is a vitally important human organ. However, it is still not essential for human life, if we consider the existence of a body without a functioning brain as one form of severe disability. Defining brain death as human death is purely a value judgment, not a scientific judgment. If you have a different value from the mainstream medical and legal authorities, there is no reason to believe it is human death, even if most people agree that it is probably the worst case of disability. 

The critically important question you have to ask yourself is this: Does your loved one want to donate organs? If your loved one is a committed organ donor, or even if your loved one’s explicit wishes are uncertain, you as a surrogate decision maker believe that she/he has likely approved the donation and you believe it is in the overall best interest for the patient to donate the organs, then the best course of action is to accept the diagnostic test of brain death, so that the organs can be prepared in the best condition for donation. 

If the diagnosis of brain death turns out negative, your medical team might propose a donation after the circulatory determination of death. It is one way to donate organs without establishing the diagnosis of brain death. While donation after circulatory determination of death is by itself morally controversial (because organs are taken out very quickly after the heart stops, usually within a few to several minutes at most), if you and your loved one feel that it is more acceptable than donation after brain death (or neurological determination of death), you want to explore this possibility. Please keep in mind that not every hospital can provide this service, and not every potential donor is qualified for this method of donation.

The current legal systems in the U.S., U.K., and most Western European countries equate an established diagnosis of brain death to human death. By definition, the declaration of death is irreversible and irrevocable. This means that you cannot reject the diagnosis of death, whether brain death or traditional death, once it is established. On the other hand, the diagnostic procedure of brain death involves certain risks. Like any other medical procedures performed in hospitals, particularly the ones involving risk, it is appropriate for you, as a family member or a surrogate decision-maker, to ask for informed consent before the procedure is initiated. 

While this author and other medical ethicists believe that formal consent is morally required before the diagnosis of brain death, professional organizations of neurologists and ICU doctors do not endorse the requirement for informed consent. On the contrary, there is now an effort to make it explicit that consent is not required before the diagnosis of brain death. Regardless, patients and their surrogates have the right to be informed, and a chance to consent or decline prior to any medical procedure. If you do not hear from them about consent, it is appropriate for you to ask about it. 

During the diagnostic procedure of brain death, while your loved one is breathing through the ventilator, this machine will be temporarily stopped. This is called an apnea test. While oxygen has been fully saturated in the body before stopping the ventilator, carbon dioxide which is generated by the body's metabolism quickly accumulates inside the body. Since the lungs cannot eliminate carbon dioxide through the ventilator, it can cause various effects on the body. The target observation is whether the patient makes any effort to breathe in response to the stimulation of the brainstem by the accumulated carbon dioxide. If the brainstem has lost its normal function, the patient does not make normal muscle movements to try to breathe. This is the critical test that decides the doctor's diagnosis. But the side effect of oversaturated carbon dioxide can happen occasionally, such as a sudden drop in blood pressure, and irregular heart rhythm which can lead to cardiac arrest. 

This request should be acceptable to the medical team. If not, you may want to insist and negotiate. It is the time that the patient’s survivability changes from hour to hour, and there is nothing wrong to continue life support while watching further development for several days to a week. The diagnosis of brain death is not necessarily beneficial to the patient if you and the patient do not want to proceed to organ donation. In the meantime, you should reflect on the possibility of donating organs further. There will be three possibilities while you continue watchful observation: 

1. If the loved one is truly in a state of brain death, she/he can go into cardiac arrest. You need to be prepared for a question on whether the medical team should do intensive treatment to revive the heart and blood circulation, or you want to request what is called do-not-resuscitate order, given a poor prognosis.

2. Regardless of whether the diagnostic criteria of brain death are met, if the loved one’s entire brain is not “dead”, she/he can continue to live on a ventilator for several days or longer.

3. If the loved one is truly not in the state of brain death, she/he can continue to live. Some neurologic signs that are incompatible with brain death may be detected, and the suspicion of brain death will be reversed. The long-term prognosis, however, is still uncertain at that point. There may be a small chance for some recovery over the long run, particularly if your loved one is young.

Unfortunately, alternatives to the diagnosis of brain death are generally not encouraging. The evaluation of the outcome all depends on your value system about life and death. Probably the most likely outcome is that your loved one will soon succumb to cardiac arrest. After all, when the concept of brain death was introduced in the 1960s and 70s, we physicians believed that whether we make the diagnosis of brain death or not, the patient will sooner or later die. It was believed that the difference is only a matter of days to a week at most. Thanks to the advancement of life-sustaining treatment, this difference became much longer and unpredictable. 

If your loved one and you feel that human life in any form and shape is more valuable than death, you could look after the loved one until the heart finally stops and she expires. Please keep in mind that if you ask the medical team to continue intensive medical support, particularly cardiac resuscitation if the heart stops, it may appear to be cruel to the patient because it might only slow down and prolong the dying process with heroic measures. It might be entirely reasonable and ethical to consider that natural life finally ends when the heart stops on its own. In that case, I encourage you to ask the medical team to place a do-not-resuscitate (DNR) order. 

The other end of the spectrum of the value of life is to view consciousness as the essential property of human life. In this view, permanent unconsciousness is not worth living. Since the chance of regaining consciousness at this stage (when doctors suspect brain death and recommend the formal diagnostic procedure) is statistically minuscule, it is entirely reasonable to transition from intensive life-sustaining treatment to what is called "comfort measures" or palliative care. The care becomes more focused on the comfort and dignity of the patient than sustaining life at all costs. Of course, there is nothing wrong to make this decision after the formal testing of brain death is done. But if your loved one is not an organ donor, and any further prolongation of such an existence is unbearable, it is reasonable to transition to  comfort measures without going through an additional test. 

This is a small but significant possibility if your loved one is young, particularly younger than low teens. Most cases of long survival (also called somatic survival) happened in children. As demonstrated by the case of Jahi McMath, once the diagnosis of brain death is established, it is almost impossible to reverse the legal status of death. On the other hand, if you decline the diagnosis of brain death, she/he may die from other reasons, including cardiac arrest, uncontrollable low blood pressure, and infections including pneumonia. If such common complications can be managed, your loved one can transition to the condition known as a persistent vegetative state, particularly if brain death actually did not fully develop. Young brains are resilient and adaptable. Even Jahi McMath, who was formally diagnosed as brain dead, was still reported to show some sign of awareness later. That might be a source of your hope. On the other hand, maintaining such a person is an enormous task. Very few long-term care facilities are willing to accept such severe disabilities. If you are a parent of this patient, are you prepared to take responsibility for this child who will be probably the most difficult case of mental and physical disability? 

I think you hear much different advice from healthcare professionals. Some will try to convince you that it is almost certain that your loved one is dead, and that the test for brain death is just a “normal” protocol in the ICU. In other cases, if you are away from the hospital for other important errands, you might be told that they have already tested and your loved one is already dead (by the neurologic criteria). This is what happened to Jahi McMath’s family. If you first hear about the possibility of brain death, I strongly recommend you ask for informed consent before the test is done, because once the test is done, it is too late and the result is irrevocable. 

To avoid any misunderstanding, I am not denying the important role of brain death in transplantation medicine and the efficient use of ICU beds. Nevertheless, as important as brain death may be for transplantation medicine and saving the ICU resources, it is indefensible to perform this test in a clandestine manner without giving the family and surrogate a full opportunity to participate in decision-making. Why can they not do the diagnostic test of brain death as transparently as a colonoscopy where you do not undergo the test without your full informed consent? The reason, in my view, is the inherently controversial and value-laden concept of brain death itself.