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Brain-Dead Person
: Human relationship–oriented Analysis of Brain Death

Masahiro Morioka

> General information of this book

(Ch.1 Ch.2 Ch.3 Ch.4 Ch.5 Ch.6 Ch.7)

I want to define “care of the sphere” as medical treatment that takes as its focus the work that supports and cares for the condition of the human relationships that surround the patient.

At some point the brain dead person’s heart will stop and their dead body will become cold. But until that point, the family do not fully comprehend that this will happen, and they have not said farewell to their loved one. This experience is necessary for a family to fully accept the death of a brain dead person. If you switch off the respirator and perform organ transplants before they can have this experience, then a perpetual scar will be left on the hearts of the family. The family’s acceptance of their loss comes about through care of the blood relative who has become brain dead -- care or attendance of the brain dead person. The first job of the medical treatment of the brain dead person is helping the family to attend the brain dead person.

*Translated by Alex Jones.
*Page numbers in the original (Hozokan edition) are marked by [(preceding page) / (following page)].

Chapter 2
What Kind of Place is an Intensive Care Unit?


Intensive monitoring and visiting limitations in the ICU

    Up until now many theories about brain death have paid little attention to the place known as the Intensive Care Unit. I think that this is because they have taken an interest only in the contents of the brain of the brain dead person.
    Just what kind of place is the Intensive Care Unit (ICU), that brings about the existence of the brain dead person?
    Simply put, the ICU is a room for patients with conditions so serious that if you are negligent for even a moment they might pass away. It is a single room in the hospital where all kinds of machines are brought together to assist patients who are watched over wide-eyed, given medical treatment, and nursed. If a patient in such a serious condition were left in a normal ward, then they might be neglected, because treatment for ordinary patients would be insufficient for their needs.[20/21] Further, if a seriously ill patient’s symptoms were to suddenly worsen and become urgent, all sorts of equipment would have to be dragged from here and there and by then it might be too late.
    So a room was created to bring together in one place all the equipment and machinery necessary to supervise and care for a seriously ill patient, as well as specialist doctors and nurses, to treat the patient without the possibility of neglecting them. This is the ICU.
    Please look at Figure 2, and Photograph 1. This is the ICU of Kobe City General Hospital (ICU/CCU Practice, Kanahara Shuppan, Kobe City General Hospital’s Intensive Care Department (ed.), Oct.1986, pp.328-329). The position of the beds is slightly different from a normal ward, and they are in a star formation like in the diagram. The main room of the ICU is the large room with four groups of beds arranged in star formations. Because machinery is placed between the beds, there is no line of sight between the patients. As you can see from the photograph, the beds are surrounded by various tubes and machines. Although the patients’ line of sight to each other has been blocked, it has been made possible to see the condition of all of the patients at a glance from the nurse’s station located at the center of the ICU. This hospital has been praised for its all-out efficiency, which makes it possible for a patient to receive emergency treatment in under four minutes, no matter where they are in the hospital: two minutes and thirty seconds to bring them to the ICU, and one minute to prepare medical equipment.
    Photograph 2 on page 24 shows a more typical scene in an ICU -- this is TokyoMedicalUniversity (photograph by Keiko Tajima from ICU Kango Nyuumon (A Guide to Nursing in the ICU), Igakushoin, Mar. 1989, p.135). The beds are lined up, with curtains drawn between them.
    The ICU is an extremely man-made space. Firstly, most ICU’s are large, closed-off rooms with no windows. [21/22] Under 24-hour illumination, doctors and nurses work busily in a standing position, new patients come and go regardless of whether it’s day or night, and there are all kinds of machines, flashing lights and noises. As the lighting never changes, you are not aware of the difference between day and night (although some ICU’s do have windows -- I visited an ICU in Chiba University Hospital’s where there are windows above the head of the beds in the ICU, and the lights are turned out at night).


Figure 2: Floor plan of ICU of Kobe City General Hospital

4.Central Monitor
5.Preparation and work room
6.Pre-surgery room
7.Intensive Care Unit (ICU)
8.Large machine storage room
9.Sanitation room
10.Aseptic (sterilised) surgery room
11.Primary washing room
12.Emergency elevator
13.Nurses’ lounge
14.Critical Care Unit (CCU) -- single bed rooms
15.Preparation room
16.Sterilised room
17.Recording and monitoring machines
18.Work room
19.Visiting corner
20.Conference room
21.Doctor’s lounge
22.Night duty room
23.Dialysis room
24.Family waiting room
26.Changing room
27.Briefing room
28.Anaesthesia room
29.Central elevator hall
30.ICU -- single bed rooms

Photograph 1: Beds in the ICU of Kobe City General Hospital



    The temperature is kept between 21-24 degrees, the humidity at 50-60%, and the room is ventilated around 10 times an hour. The result is that the ICU becomes a “clean room” with the least amount of germs and dust. A characteristic feature of an ICU is the system that provides ceaseless monitoring of the patients in their beds. The ICU has been readied so that even the slightest change in a patient’s condition will not be missed. This is made possible by a battery of machines and equipment that monitor the patient. These are called “monitors” or “the monitoring system.”
    First, monitors are placed next to the patient’s bed. These monitor the patient’s heart rate, blood pressure, body temperature and breathing, and display this information on a CRT screen. Then machines record the information as numerical values. [23/24] If a patient’s statistics become abnormal, a warning light flashes and an alarm sounds. This is to alert the doctors and nurses who will race to the scene.


Photograph 2: The inside of a typical ICU



     The bedside monitors are also linked to the nurses station which is on stand-by, so the nurses can keep an intensive watch over the condition of all of the patients from one place. The data is then processed by the computers, and stored away. Apparently, these days, these machines can create reports by themselves (please refer to ICUKango Nyuumon pp. 89-95).
    The ICU supervises patients by this kind of thorough monitoring. But apart from medical and nursing-related workers, it is to an extreme extent an exclusive world. In the ICU, the intensive supervision and treatment of the patient takes top priority, so it is necessary to send everyone else out in case they get in the way. One example of this is the time restriction on family visits. [24/25]
The inside of the ICU is kept as a “clean room,” free of dust and germs. This is because the natural resistance of seriously ill patients is so low that if bacteria should spread to them, their condition may worsen and they might die. To this end, patients are strictly supervised as regards infection. However, it sometimes happens that when a family comes to visit a seriously ill patient, they bring in germs and dust from outside into the ICU. Not only does this increase the danger of spreading germs by touching the patient, but they may also create further problems by contaminating the inside of the ICU and other patients. Also, if the family spends a long time next to the patient, they hinder the intensive supervision of the patient, and they might also upset the monitoring machines connected to the patient, for instance by touching the patient.
Because of this, most ICU’s have implemented time restrictions on family visits. In the case of Kobe City General Hospital mentioned previously, ten-minute visits are allowed twice a day, between 10:00 to 11:00 AM, and between 3:00 to 4:00 PM. In principle, up to two family members are allowed to visit. Before entering, they must wash their hands, put on protective clothing, hats and masks, special footwear, and use only clean items designated by the hospital (ICU/CCU Practice pp. 337-339). In Kanagawa Nagahama Prefectural Hospital, only two five-minute visits are allowed, at 1:30PM and 6:30PM (ICU/CCU Nursing Manual, Igaku Kyoiku Shuppan, Mar.1988, p.180, p.208). It seems that Japan’s ICU visiting time limitations are thought to be rather strict. [25/26]

The integration of compartmentalized medical treatment

    Brain dead people are created in this kind of place, the ICU. However, the ICU does not exist for the creation of brain dead people -- completely the opposite. The main function of the provision of intensive medical treatment in the ICU is to prevent the creation of brain dead people. Please grasp this point firmly, and do not misunderstand it.
    However, it is an unmistakable fact that brain dead people are created within the ICU. What are the particulars of becoming a brain dead person? Patients are brought into the ICU from emergency treatment rooms, surgery, or general treatment rooms. Now let us assume that a partially conscious patient or a patient in a coma has been taken into the ICU, and take a brief look at the process by which he or she becomes a brain dead person.
    A patient who is in a partial state of coma is brought into the ICU. Coma is a state in which the patient has almost no reaction to pain stimuli. Firstly, their mouth is pulled open to create an airway for breathing. In cases where something is stuck in the throat or windpipe, it is removed by sucking it out using a machine. Then an artificial respirator is attached to the patient’s mouth or throat. Artificial respirators are machines that pump air into the patient’s lungs because they are too weak to do it themselves, allowing the patient to keep breathing through artificial means. There is a computer inside the machine, allowing it to regulate correctly not only the rhythm and amount of air pumped in, but also the pressure inside the patient’s windpipe. [26/27]
    The patient’s temperature is measured, an electrocardiogram is taken, their blood pressure is measured, then a blood sample is taken and the blood gas is analysed. A small tube is inserted into the urinary bladder and their urine is tested. Booster medication, antibiotics and nutrients are administered through a drip. Intravenous Hyperalimentation (IVH) supplies 2000-3000 calories per day. Depending on the circumstances, a blood transfusion is made.
    As mentioned before, various machines are connected to the patient to monitor over them. Because of this, a patient receiving intensive treatment in the ICU is restricted by many tubes and connection cords, and cannot move their body freely. If they move their body, a nurse comes rushing over to check that the tubes and cords are still connected.
    A patient’s level of consciousness is measured, and the position and condition of their legs and arms inspected. Their pupillary reflexes are observed. So that a patient’s brain may return to its normal state, appropriate medical measures are taken. For example, if there is excess pressure in the cranium, drugs are given to reduce the pressure, or a needle is inserted in the head to drain internal fluid and reduce pressure.
    In this way, while a patient is receiving many kinds of simultaneous treatment one after another, they regain consciousness and are gradually pulled back from the abyss of death. However, despite this kind of complete medical treatment there are patients who slowly begin to develop the symptoms of brain death as stated in chapter 1. Their condition grows increasingly worse until finally they meet the standards for being diagnosed as brain dead. A “brain dead person” is born.
    This book is not a medical text, so I will not write in any more detail about the emergency medical treatment in the ICU. However a very important point has already been made clear in what I have said so far.
    The basic idea of treatment in the ICU is to combine various treatments of each part of the patient’s body in order to cure the whole body. Patients brought into the ICU usually have serious damage to many parts of their body. [27/28] For example, a certain patient had problems with their brain, their heart, their blood circulation and their respiratory organs. So it was necessary for the patient to receive treatment A for the brain, treatment B for the heart, treatment C for blood circulation, and treatment D for respiration, all at the same time. If we make this a more concrete example, a patient in a coma will receive medical treatment to heal each part of their body: artificial respiration apparatus to keep them breathing, nutrients and blood transfusions for their metabolism and circulation, fluid drained from their skull to relieve pressure on their brain, and so on.
    When various methods like this are combined in the ICU, the mutual relationship between each method, and the way of combining them are considered very thoroughly in order to provide comprehensive medical treatment. If they were considered blindly and rashly, then there is no way all of these individual treatments could be brought together. The issue of how to bring these individual medical techniques together to provide effective treatment for the whole body is at the heart of medical treatment in the ICU.
    When all of these individual techniques are successful, then the body will recover in a balanced way, and the patient will come out of a coma and escape brain death. If on the other hand, despite medical treatment restoring their heart and respiration through the help of machines, the treatment fails in the part known as the brain, then the patient will become a brain dead person.
    The methods of treatment in the ICU express the modern-day medical principle of compartmentalization. The principle of medical compartmentalization is covered in chapter 6. [28/29]

The system of supervision and efficient treatment

    The main distinguishing feature of the ICU is the thorough supervision that makes full use of various monitors. These monitors record even the slightest change in a patient’s condition, and if something unusual happens, they alert the doctors and nurses with alarms and flashing lights. At regular intervals the nurses go the patients’ bedsides and check their vital signs: their temperature, pulse, breathing, blood pressure and their state of consciousness. The ICU has been designed so that this monitoring can be done as efficiently as possible. For example, a patient’s current condition can be observed directly from the monitor in the central nurses’ station. It has also been made possible for nurses to have a panoramic view over all of the patients’ beds from the nurses’ station. The ICU has been designed so that not even minute changes in a patient’s body will be missed, and so resembles a giant watchtower (of course, patients who cannot be automatically monitored are watched over by bedside nurses who check their skin colour, respiration timing and so on, and supervision and medical decisions are left up to these nurses).
    The result of this intensive “watching” is that the ICU has become a place where, while being watched over with unblinking eyes, human bodies are only seen from a medical point of view. The people lying in the beds of the ICU are nothing more than “a human with a medical condition.” Information about whatever kind of life in society this person has lead, and whatever kind of roles they have had in their family is of no importance in the ICU (unless it relates to improving their medical condition). What kind of personal history this human has accumulated, and how they are seen now by the worried family outside the ICU bears no relation to the treatment within the ICU. [29/30] What is important in the ICU is the moment to moment medical condition of this human’s body. This is the way it is in the ICU.
    Concentrating fixedly only on the facts of this human’s medical condition, and putting off all else is so that the treatment of seriously ill patients in the ICU can bear results (meanwhile the nurses try their hardest to compensate for all that has been put off).


Figure 3: Two examples of ICU’s with individual rooms



     This state of affairs gives rise to the following paradox in the ICU. Namely, to watch over the patient, the hospital workers eject from the ICU the family -- who are watching over the patient. This is because the hospital workers are concentrating only on the medical aspect of the patient. [30/31] Apart from the few minutes twice a day when they can be face to face with the patient, the family can only wait outside the ICU. Compared to the all-pervasive medical line of sight of the nurses, and monitoring machines, the family’s “line of sight” to the patient inside the ICU is blocked. Only the medical aspect of the patient is watched seriously, and this unique, uniform gaze is all that fills the ICU.
    Treatment in the ICU is said to be comprehensive treatment that treats the whole human body. However, just when the human body should be seen comprehensively, in fact, the “human” is seen only one-sidedly, with all other aspects excluded to the utmost extent. I think this is the largest paradox of the ICU. Why does this paradox exist? It is because looking at patients in this way is thought to be tremendously efficient. In an efficient place, medical treatment can bring its full power to bear. Modern medicine is efficient medicine.
    The problem of “line of sight” in the ICU is made clearer if you take a look at figure 3 (ICUKango Nyuumon p.131). This is the layout of an ICU that has been divided into private rooms. The beds have been separated with walls or curtains between them. Fellow patients have had their lines of sight entirely cut off. However, it has been made possible to see all of the patients from the nurses’ station in the very center. Here the intense gaze of those supervising falls on all those being supervised. This one central watchtower is designed to allow supervision of many small rooms from one place.
    This looks incredibly similar to the structure of the modern European thinker Jeremy Bentham’s “Panopticon” -- a design for a prison. This was designed so that all the movements of the inmates could be seen from a central watchtower. [31/32] The ICU is at the forefront of contemporary medicine, which started in Europe, and so it is of deep significance that the model of the Panopticon reappears here. Perhaps only a modern gaze fills the ICU. 

The problem of a brain dead person occupying a bed

    So let us suppose that, despite the strenuous medical efforts within the ICU, a patient becomes a brain dead person. This is also a defeat of the ICU’s medical treatment. Considering contemporary medical treatment, we can’t expect brain dead patients to recover. We can only wait for their hearts to stop.
    A brain dead person is lying on a bed in an ICU. Their heart continues to beat normally for several days, and during this time, they must occupy a bed. This is the cause of many problems.

For how long should medical treatment continue?

    The first problem that arises is that of when to cease artificial respiration. It’s acceptable to discontinue artificial respiration if the heart stops within two or three days, but what should we do if the heart continues to beat for a week or more? If we discontinue artificial respiration, then a brain dead person’s heart will soon stop beating. It seems to be particularly true that in cases where a brain dead person is still young, their family expresses the wish that the patient remains as they are until their heart stops beating naturally. As far as the circumstances permit, the family’s wishes should be respected, but the issue is not that simple. [32/33]
    Firstly, if a brain dead person is continually occupying a bed, there is the danger that in an emergency, an emergency patient cannot be admitted to the hospital. Also, to regulate and maintain an artificial respirator takes a lot of labour. There is also the way of thinking that if a lot of labour is being spent on patients who won’t recover, it should really be spent on patients who have a chance of recovery. To run an artificial respiration machine of course takes a lot of money. This expense is sometimes paid by health insurance, and sometimes by the hospital. Payment by health insurance means it is paid for by our insurance premiums or taxes. There is the feeling that using public money on brain dead patients who have no chance of recovery is just throwing it away. Finally there is the opinion that keeping a brain dead person who has no chance of recovery on an artificial respirator is disrespectful to them as human beings.
    The continuous treatment of a brain dead patient is not limited to the use of artificial respiration machines. First and foremost there is medication to boost blood pressure, as well as various other medications supplied by intravenous tubes. Similarly, nutrients to keep the brain dead patient’s body alive are also supplied in liquid form. In some cases it is necessary to perform a blood transfusion. These kinds of medical treatments consume labour and money. And on top of that, there is a chronic shortage of blood for blood transfusions. There is the opinion that using valuable blood on brain dead patients who will not recover is just immoral.

How long should nursing continue?

    As stated in chapter one, brain dead patients require various kinds of care. [33/34] For how long should we continue to measure and record the temperature, pulse and blood pressure of a person who has no hope of recovery? For how long should we clean a brain dead person’s body for them? If nurses are tied up with this kind of continuous care, it could possibly hinder the care of other patients. Nurses might also become disheartened by the futility of having to give continuous care to a patient who will never recover.
    To supervise brain dead people properly requires many kinds of care. It takes about as much trouble and labour as for a patient in a coma. This point has rarely been given much weight in literature about brain dead people. Here I will try to introduce in a more concrete way the kind and level of care that is necessary to supervise both a brain dead person and a person in a coma, as it is the same.
    First, the inside of their mouth is cleaned regularly. Because the patient’s mouth dries out easily and is not very moist, it becomes easy for bacteria to breed. So using a cotton swab, the upper and lower teeth and gums, the tongue and the inside of the mouth are painstakingly cleaned.
    The body is wiped clean. If the skin is not kept clean, then rashes can break out, and it becomes difficult for the body to perspire freely. In particular, if the genital area containing the tube used to pass urine is not kept clean, it may become inflamed. The patient’s hair is washed with medicinal alcohol. The eyes, nose and ears easily become dirty and so are cleaned with an oiled cotton swab. Because patients in a coma often have their eyes slightly open, their eyes are covered with bandages to prevent the cornea drying out.
    The position of the body is changed. The patient is lying on the bed, connected to various tubes, and facing upwards in a fixed position. If they were to be left in this position, then the side of their body with the weight on it would develop bed sores. [34/35] So the position of their body is changed every two to three hours. This takes more than two people who turn the body in an instant. At the same time, massage and shiatsu is used to relieve the muscles. Because the patients cannot move themselves, the nurses exercise the joints of the legs, knees, thighs, and the shoulders at regular intervals.
    The patients have intravenous and blood transfusion tubes inserted in them. The skin is checked thoroughly and often, to make sure that the needles are inserted correctly, and that the skin has not become inflamed. A check is made on the amount of the drip.
    Urine and bowl movements are disposed of. Urine comes out through a tube, so the amount of urine is measured.
    Even supposing that a person is brain dead, if they are to be supervised correctly, then this amount of nursing is necessary to keep their heart beating. This is quite a burden. It wouldn’t be a strange thing if, when wiping down the patients’ bodies and changing their position, some feelings of doubt might arise in a nurse.

Funding treatment and providing insurance for brain dead people

    If you support a brain dead person in the ICU, it takes a certain amount of labor, medical resources and expenses. For example, according to Yusuke Sawada, costs for one week of IVH (high calorie drip), artificial respiration and care comes to:

    • 2 official diagnoses of brain death: 100,000yen
    • One week of examination in the ICU: 180,000yen [35/36]
    • Nutrient supplies, oxygen supply, medications, blood plasma, expenses for antibiotics: 580,000yen
    • Heart massage, death formalities: 80,000yen
    • Miscellaneous costs: 30,000yen

Total:1,060,000yen (around USD $10,000)

    Sawada says the following:

If a person receives care for 50 days after being pronounced brain dead, then including costs for dealing with the dead body, the total comes to approximately 6 million yen. The patient is liable for around 30,000yen and so in reality insurance pays up around 6-7 million yen for the care of the brain dead person’s body. (Zokuzoku Nosushi to Shinzoushi no Aida de (Between Heart and Brain Death Part 3.)), Medical Friend, The Japan Society for Transplantation (ed.) Sep. 1986, pp. 219-221.)

    So it’s not strange to hear medical staff calling for treatment and care for brain dead patients to be cut off as soon as possible. For example, KagoshimaUniversity hospital has set forth a policy to end application of antibiotics, blood pressure medication, dialysis and so on, even without the agreement of the patient’s family. The family’s agreement is required for the withdrawal of artificial respiration.
    These calls do not just come from the medical field. The same appeals can be heard from those thinking about national medical economics. For example, Shin’ichi Fujita, a member of the Asahi Shimbun group has this to say:

Once a person has been medically certified as brain dead, even though the respirator is moving and the heart continues to beat, it’s not to keep the patient alive but to console the family, and this is widely known. [36/37]
    This is nothing to do with the “life” of the patient, but nothing more than wasteful playing with the “dead body” of the patient, and sooner or later, I think that the general population will come to see the common sense of this.

(…statement partially omitted…)

    If a patient is judged to be brain dead, with a zero percent chance of his or her life being saved, then what cause does it serve to keep the respirator running for a day, two days or even a week, just because the family wishes it so?
    I think it’s just for appearances.
    Of course, to let go of a dead person, a certain amount of time is necessary; that goes without saying. However, just because of that, there is no logic to the idea that the dead body should be cared for indefinitely even after the medical diagnosis of “death,” just to let go of the dead person. After one week, the brain begins to liquify itself, and the smell of death is unbearable, I have heard. It seems that some people just do not wish to see the death of a blood relative.
    However, if the blood relatives were to look from the standpoint of the dead person, they would understand that to have all sorts of tubes and needles continually inserted into you, so your body is toyed around with for no good reason is a terrible annoyance and amounts to desecration. I have heard that in any hospital, the lowest cost for maintaining a body after brain death for one day is 50,000yen. In some hospitals one day costs more than 100,000yen. If claimed as “medical expenses,” this whole cost is paid as part of health insurance, and this is a problem. [37/38]
    Sooner or later we may have to draw the line. If brain death has been diagnosed, then because medical treatment stops (a dead person cannot be treated), I think there is no other choice but for families who wish the respirator to continue running anyway to shoulder the medical expenses themselves. How many people would really want to continue the maintenance of a dead body at 50,000yen or even 100,000yen per day? If, faced with these kinds of costs, a family says, “Please stop medical treatment” then there is really nothing more we should say to them.” (Seiji to Seimeirinri (Politics and Bioethics)), FA, Diet Members’ Bioethics Research League (ed.), Feb. 1985, pp.29-31.)

    In the final report of the Japan Medical Association’s Bioethics Committee (Jan.12, 1988), there is the following passage:

In the case of organ donation, medicinal and blood transfusion measures continue after the pronouncement of brain death, as well as artificial respiration. It should be examined whether or not the application of medical insurance is the best way to deal with the problem of medical expenses occurring in the case stated above.

    There is no doubt that the problem of medical insurance will become a matter for social debate.

What is the best way to treat and nurse a brain dead person?

    Due to the above circumstances, the first ethical problem of brain death, that is to say, the first ethical problem of the ICU arises. Let’s review it once again. The ethical problem of brain death was, what is the best way to proceed with the person to person relationships surrounding brain dead people? In the same way, the ethical problem of the ICU is, what is the best way to proceed concerning brain dead people within the place just described known as the ICU? [38/39]
    The ethical problems in the ICU can be organised into roughly three types.

1) Is it right to cut off medical treatment and nursing, and artificially accelerate the heart failure of a brain dead person?

2) Who should decide this?

3) What should we do if the family wants medical treatment and nursing for the brain dead person to continue?

    These are difficult problems that do not have a simple answer. There are many possible ways of thinking about it. I think that if the brain dead person has expressed the desire at some point, and if his or her family consents, then we should respect a request to terminate medical treatment and care. However, there is one condition. This is as follows: the decision to stop medical treatment should be made by the doctor in charge who has fully confirmed the patient’s former wishes and the family’s will. When the family wish for medical treatment and nursing to continue, the nurses and doctors, should continue for as long as possible, providing as much care as they can for the family of the brain dead person.
    I will try to state this point in a more easily understandable way.
    I think there are two ways of thinking concerning the grounds for the opinion that we should stop medical treatment and nursing of brain dead people. The first is that, although of course we want to keep a brain dead person’s heart alive, if we consider the labour of the doctors and nurses, and the hindrance to other patients in the ICU, and the expenditure of essential resources, and money, then we should end medical treatment and nursing. In other words, this opinion is that although there may be reasons for giving brain dead people medical treatment and nursing, if we consider the surrounding circumstances, this is not a good enough reason to continue treatment. I think that this argument is correct, if you think we should concentrate only on how to distribute scarce medical resources. [39/40]
    The other way of thinking is that we should end medical treatment and nursing of brain dead people because it is futile. Brain dead people are not going to recover. Giving them medical treatment and nursing is a complete waste, and therefore a meaningless action. The Japan Medical Association too, holds that as brain dead people are medically dead, then treatment of the dead body cannot be said to be medical treatment. This is their way of thinking. I think that this is mistaken.
    The reason for this is because, I think that the medical care of the dead body can be said to be excellent medical treatment. Using the phrase “dead body” here might suggest that I am thinking of the brain dead person only as a dead body, so to avoid this misunderstanding, I would like to rephrase my last sentence to the following: I think that the medical care of brain dead people can be said to be excellent medical care.
    Many people will probably have a strange impression as they read this. “There is no such thing as medical care for brain dead people. You see, brain dead people are already medically dead, and won’t recover, and aren’t even conscious. What kind of treatment are you going to give them? What kind of merit do you see in such treatment?”
    To those who think in this way -- you are already caught in a trap. This is the trap of thinking that you can understand brain death just by understanding the contents of the brain, as stated in chapter 1.
    You must change your way of thinking.
    Let’s return and consider the issue from the beginning. “Brain death” did not concern the contents of the brain, but rather person to person relationships. “Brain death” was about the human relationships surrounding the brain dead person. What I mean is, the medical care of a brain dead person is medical care of the “sphere” of the human relationships surrounding the brain dead person. [40/41]
    Well, what could “medical care of the sphere” be?
    The life saving treatment in the ICU was medical care that takes as its focus the treatment of the patient’s body and the inside of the patient’s brain. By contrast, I want to define “care of the sphere” as medical treatment that takes as its focus the work that supports and cares for the condition of the human relationships that surround the patient.

Medical treatment that centers around care of the sphere of person to person relationships

    Let’s take a more concrete look at the medical care of this sphere.
    When a comatose patient is carried into the ICU for the first time, the first thing that occurs is “life saving treatment of the comatose patient.” This medical care concentrates completely on the contents of the patient’s brain, and their body. From the time when this treatment fails, and the patient becomes a brain dead person, then “treatment of the sphere” -- which is different from the life saving treatment of the patient -- begins. Or, in other words, we begin the “medical treatment of brain death.”
    Amongst all the people surrounding the brain dead person receiving medical treatment, the most in need of assistance are the family of the brain dead person. As has already been stated before, the ICU is a world in which the attendant gaze of the blood relatives is excluded to the utmost extent. The family are continuously waiting outside the ICU, hoping to see the figure of their own kin recover and come out of the ICU, so to suddenly be told that “the patient is brain dead” leaves them at a loss for how they should react.
    This is because the family cannot yet completely accept the death of their blood relative. At some point the brain dead person’s heart will stop and their dead body will become cold. [41/42] But until that point, the family do not fully comprehend that this will happen, and they have not said farewell to their loved one. This experience is necessary for a family to fully accept the death of a brain dead person. If you switch off the respirator and perform organ transplants before they can have this experience, then a perpetual scar will be left on the hearts of the family.
    The family’s acceptance of their loss comes about through care of the blood relative who has become brain dead -- care or attendance of the brain dead person. The first job of the medical treatment of the brain dead person is helping the family to attend the brain dead person. Helping the family to attend the brain dead person means, establishing a quiet place away from doctors and nurses for the family attending the brain dead person, showing consideration, and in other words providing nursing care for the family.
    The emergency treatment in the ICU was medical treatment that prioritised the medical health aspect of the patient above nursing the patient. By contrast, the medical treatment after brain death is medical treatment that places priority on the nursing care of the sphere of person to person relationships surrounding the brain dead person. In particular, the nursing care of the family watching over the brain dead person becomes the main focus here.
    I think that the opinion that care of the family’s feelings is best left up to nurses, and that it does not deserve the name of “medical treatment” is due to the arrogance of doctors. This arrogance is the cause of a growing feeling of distrust of doctors by patients and families, as will be covered in the next chapter. By clinging to the fixed idea that medical treatment is to cure the bodies of people who have a chance of recovery, the treatment of brain dead people is ignored. If you are aware of the fact that the goal of medical treatment of a brain dead person is nursing care of the person to person sphere, you can easily come to understand the concept of medical treatment of brain death.
    The ethical problem of the ICU was how best to proceed concerning the relationships of the family, doctors and nurses, surrounding the brain dead person in the ICU. [42/43] Now, we can give this question only one answer. It is that doctors and nurses should care for the family watching over the brain dead person. Therefore I think that our society should adopt the courtesy of caring for the family watching over the brain dead person.
    This way of thinking is not entirely new in itself.
    As a matter of fact, in the case of “terminal care” for cancer patients facing death, alongside the care of the patients themselves, the importance of caring for the patient’s family is also beginning to be discussed. The family, watching over the final struggle against illness by a blood relative with whom they have shared a long life, are in a state of confusion, pain and sadness. The care of the mental health of the family continues after the death of the patient, by making efforts to contact the family and staying with them in their time of sadness. (Ganshi Kea Manyuaru (Care Manual for Cancer Deaths)), Masahiro IIo and Hiroomi Kouno, Igaku Shoin, Apr.1987). In the case of “terminal care,” the family receives this kind of care. This is not simply an addition to life-prolonging medicine. Instead, at the bottom of terminal care lies “nursing care of the sphere” of human relationships that takes the family as one of its main objects. One characteristic of the essence of nursing is care of the person to person sphere. In the ICU, specific techniques concerning the brain dead patient’s body were given priority, but even here the “nursing care of the sphere” was by no means absent.
    I want to call this medical treatment that centers around the “nursing care of the sphere”: “sphere treatment.” If “sphere” is too difficult a word, it can be expressed as “treatment of relations.”
    The treatment for brain death is the same. We must move towards the existence of medical treatment that centers around care of the sphere. [43/44]

Caring for Brain Dead People

    So, to support a family’s care of a brain dead person, doctors and nurses must do three things:

1) Guarantee a sufficient amount of time spent for the family to attend the brain dead person.

2) Offer to set up a quiet place where this can be done.

3) Offer basic minimum nursing care to a brain dead person.

    The first two relate to the care of the family, and the third relates to the care of the brain dead person. I shall explain them in order.
    The care of a brain dead person is care that allows the family to bid farewell and let go of the brain dead person, through realising that the brain dead person is at last a cold dead body that will not recover. In the case of a brain dead person, who is warm and with blood still flowing, it is significantly harder to say goodbye.
    When attending a brain dead person, the (imminent) death takes a lot of time to accept. Those with a warm brain dead person before them cannot suddenly let go as if it were a cold dead body; they need more time. Even doctors too, such as Tateo Sugimoto speaks of his experience as follows:

We have reached a point these days where there is no system where doctors and patients and their families can speak on completely equal terms. If there is a sudden unexpected incident such as a traffic accident, no matter how simple the contents of the doctor’s explanation is, a certain amount of time is necessary before a level of acceptance is reached. Even from my standpoint, as a person who understands the physiology of the brain, it took several days for me to accept it satisfactorily. [44/45] Understanding the inside of the brain and actually comprehending it in reality are two separate things. (Kita Kamo Shirenai Seifuku (A Uniform My Son Might Have Worn), p.198).

    A group formed by Yoshiko Taguchi, from Nippon Medical School, is conducting research that records in detail the mental condition of the brain dead person’s family (Asahi Shimbun 1988, Jan 26, morning edition). For example, the mental changes in the wife of a 52 year old brain dead man, were divided into four stages. The first stage lasted until 3 days after the diagnosis of brain death. It was a state of panic and incomprehension. The second stage was from the 3rd to the 4th day. This was a state of confusion and anxiety, and the family prayed for a miracle. The third stage was from the 4th to the 6th day. Their emotions become more ordered and they became able to think about things realistically. And when they reached the fourth stage, from the 6th to the 10th day, they finally accepted the death, and are able to ask for the respirator to be removed.
    In the case of this family, from the diagnosis of brain death to acceptance of the death took a little over one week. I don’t know under what conditions and for what length of time the family were allowed to visit the brain dead person in this ICU, but to accept the death of a family member, I think that several days to one week is necessary as the minimum length of time.
    Depending on the family, there are many levels to their acceptance of the death. For example, a level at which they understand it in their heads, but have not really registered it yet, a level at which patients’ sadness and confusion seems to have passed and they are comparatively calm, a level at which you have become able to assent to removing the respirator of your own free will, and the level at which you can finally accept in reality that the patient has passed away and calmly respond to the situation, and so on. It might take many months or even many years to reach this final state of mind, even after the patient’s heart has stopped beating. [45/46]
    Although there are many levels to be distinguished during the acceptance of death, I would like to think now about the level that could be described as “Having passed the state of confusion and panic, and reaching a level at which you have become able to assent to removing the respirator of your own free will.”
    By the above reasoning, to really assist in the care of brain dead people, the family must be guaranteed at least several days to one whole week. However, under the current system family members are not allowed into the ICU apart from about ten minutes twice a day, so I wonder if this guarantee is really possible. If only the hospital side would take an interest, it would not be impossible for the family to spend an extended amount of time in the ICU. Keiko Tajima says the following:

In America from the mid 1950’s to the 1960’s, the problem of “ICU syndrome” grew steadily worse, but one measure introduced to deal with it was to extend the visiting time of a family and break down the visiting restrictions, and it seems their condition began to improve.
    The relation of long visits to equipment, medical treatment, and the level and frequency of care in the ICU must be considered, but if nurses make accurate judgements according to the necessity of these things, it’s possible to say that attending will not in any way obstruct medical care or nursing. I hope that in the management of future ICUs, visiting times will have as few restrictions as possible.” (ICUKango Nyuumon, pp. 32-33.)

    So as long as the doctors and nurses do not resent it, isn’t it possible for the family to visit brain dead patients in the ICU for an extended period of time? Doubtless it will be said that there is the danger of the family bringing dust and bacteria into the ICU. But Tajima says, “There are modern ventilation systems and air purifiers, and if these are taken into account then surely this situation will improve.” (same publication, p.32.) [46/47] Further, because the patient is already brain dead, there is no need to be so nervous about the family causing the monitoring equipment attached to the patient to malfunction.
    Let’s think about nursing care in relation to a brain dead person. The very first thing that should be done is to make it so that the family receives support in their attendance of the brain dead person. If the very least consideration is to be given to the attendance of the death of a person and the family’s acceptance of this death, then we must not neglect to pay respect to the dying (or dead) person’s body and to keep it clean. For example, at a funeral, the body is treated with great care and made so that it looks presentable and not offensive. On the occasion of a funeral, a parting, this happens as a matter of common sense.
    The attendance of a brain dead person is the same. When they support the parting of the family from the brain dead person, I think that as a show of respect and courtesy to the family, doctors and nurses should keep care of the patient to a minimum. So it is not necessary to continue all the care that took place before the patient was pronounced brain dead. To be useful to the attendance of the family, only care that does not impinge on the dignity of a brain dead person should continue. For example, it’s acceptable to detach various types of monitoring equipment. It might also be acceptable in some cases to stop blood transfusion. The use of artificial respiration machines, intravenous tubes for nutrition, and various medicines including vasopressin should be kept to a minimum. The body’s position may still be changed, and it may be cleaned. The family members could participate in this care, not just the nurses. I think the exercising of the patient’s legs and arms can be left out. Exactly what should continue and what may stop should be decided by the nurses and doctors present at the time. [47/48]

Moving the bed outside the ICU

    If we think in this way, the number of kinds of machines and equipment around the brain dead person will be drastically reduced. Further, as this is not a life and death situation, there is no need for such severe observation. And if we do that, then another possibility for attending to the brain dead person arises. It’s as you think. Move the bed right out of the ICU. The bed has wheels attached, so swap the artificial respirator for a smaller one, and taking along the IVH drip, move the bed right out of the ICU.
    If the bed is put in an ordinary hospital room, then other patients may be disturbed, so an individual room would be fine. Depending on the size of the hospital, there is an even better method. Please take another look at the diagram 2 of the ICU at Kobe City General Hospital. There are many small rooms adjoining the main ICU. Amongst these, there is a family waiting room, a briefing room, a conference room, a doctor’s lounge and so on. One of these should be made into a room to attend the brain dead person. With a little juggling, this wouldn’t be impossible. In newly-established wards, rooms made especially for attending brain dead patients, between the ICU and ordinary wards, are being considered (a kind of “halfway-house” concept if you will). Of course, rooms for attending brain dead patients do not have to be permanently so; they may be used for other purposes according to the circumstances. Recently, in large hospitals, “serious illness supervision rooms,” lying directly between the ICU and ordinary hospital rooms have begun to appear. So for example, what if we section off a corner in this serious illness supervision room, and make it into a room for attending brain dead people? I think that it is worth considering. [48/49]
    If you take a brain dead person out of the ICU, then obviously it will speed up heart failure. However, because treatment of a brain dead person is nursing those attending them rather than extending the life of their heart, then if the family so wishes, doctors need not have a guilty conscience about this.
    Those who hold the opinion that medical treatment of brain dead people is useless medicine, also say that brain dead people should quickly be taken off respirators and moved out of the ICU. However, they are saying this only thinking of economic efficiency. The necessity of attending the brain dead person does not enter their field of view. This way of thinking should be ruled out.
    The members at the Japan Medical Association’s Bioethics Committee made a statement at a press conference to the effect that keeping brain dead people on artificial respirators was contrary to respect for human beings. However, the wishes of the brain dead person made before the event should take priority, followed by the judgement of the family attending the brain dead person, so this is not a general proposal that should have been put forward by an authoritative group.

From life saving medicine to medicine centered around nursing

    Well, let’s express what has been said so far as a diagram (refer to the following figure 4).
    A patient who cannot regain consciousness or is in a comatose state is brought into the ICU. Life-saving treatment is given, but despite that, the patient falls into a state of brain death. The treatment that takes place at this time is first and foremost treatment for the patient in a comatose state. [49/50] The nurses provide necessary care for the body so that life-saving treatment may have its greatest effect. They also try to present easily understandable information to the family waiting outside the ICU.

Figure 4: How the priority of treatment changes



    After the diagnosis of brain death, the nature of medical care changes greatly.
    After the diagnosis of brain death, medical treatment centers around the family’s attendance of the brain dead person, for which the doctors and nurses provide support and care. Medical care does not stop with the diagnosis of brain death. Medical care changes its character, and continues even after the diagnosis of brain death. In the diagram, three routes are shown after a diagnosis of brain death. [50/51] The middle route is that of caring for a brain dead person in the ICU until their heart stops. Depending on the circumstances at the hospital, the patient may not be able to be moved outside of the ICU, or perhaps the family wish to retain the best care to keep the heart alive; in these cases the patient stays in the ICU until their heart stops.
    The lower route is the case where a brain dead person is attended to in an empty room of the ICU or a general hospital room.
    There is one more route, the upper one. This is when organs are transplanted from the brain dead person. At the present time, organ transplantation from brain dead people is a race against time. A brain dead person who becomes a donor must be strictly supervised up until the time their organs are removed in a room specially prepared for the transplant operation. It becomes very hard to transplant if a prospective transplant organ does not have enough blood or nutrients circulating through it, or if it becomes infected with bacteria. A brain dead person who has been designated for a transplant operation undergoes strict round-the-clock monitoring by the doctors and nurses in the ICU.
    But even in this case, I want to assert the following: Even though supervision for the sake of organ transplantation is necessary, it does not follow that it is acceptable to make light of giving support to those attending the brain dead person. Organ transplants should only occur after the family have finished attending the brain dead person, and have accepted their death. I think that hospitals that are not confident they can prepare for and be ready to support a family attending a brain dead person, no matter how difficult it may be, should not be removing organs for transplant in the first place. The time that a family takes to let go of a brain dead person can only take place before organ removal and within the ICU.
    After the diagnosis of brain death, medical treatment changes as stated previously. Together with this, nursing in the ICU also changes. Up until this point, nursing in the ICU has been nursing before the judgement of brain death. [51/52] This is nursing where the nurses only care for the patient’s body so that medical treatment can have its greatest effect. This includes when they talk to patients and provide psychological care. By taking on the responsibility of providing information to the family waiting outside the ICU, they also care for the family. This is all the nursing there has been within the ICU up until now.
    Nursing that takes place after the diagnosis of brain death enters a new phase. This kind of nursing is “nursing care of the sphere”-- caring for the human relationships surrounding the brain dead person. More specifically, the aim of this nursing is to support the family of the brain dead person as they attend the brain dead person and come to terms with their death. It is necessary to combine this concept with previous ideas of nursing in the ICU.
    In addition to this, the meaning and content of nursing changes after the diagnosis of brain death. For example, before the diagnosis of brain death, “cleaning the patient’s body” has the aim of helping the patient to recover unharmed by keeping their body free from bacterial infection. However after the diagnosis of brain death, in addition to preserving the dignity of the patient, “cleaning the patient’s body” has aim of helping the family to accept the death of the brain dead person more smoothly by not allowing them to see an uncleaned body, which would have a negative effect on their psychological state. This will also help the nurses to say farewell to the patients.
    When medical care and nursing takes place after brain death, the largest problem is what to do about expenses such as labour costs and costs for medical goods. Some hold the opinion, just as Mr. Fujita did before, that after the diagnosis of brain death related expenses should be borne by the patients or the family themselves. However I disagree with this. This is because at the heart of Mr. Fujita’s way of thinking runs the idea that after brain death, medical treatment and nursing should be excluded as they are useless. I think that there should be a fixed limit to be borne publicly for nursing and medical treatment expenses that occur after brain death. [52/53] This is because I think that expenses for supporting the family’s attendance of the brain dead person should be considered to be normal medical expenses. Compared to the huge amount of public medical expenses, these are nothing more than a tiny amount.
    The difficult thing is the problem of whether or not to continue the nursing and attendance of brain dead people when there are not enough nurses in a hospital, or when spare beds in the ICU become filled up, or when medicines administered to the brain dead person are very expensive, and so on. This is known generally as “the problem of distributing scarce medical resources.” I’ve heard that in a hospital, in practice, this is a very distressing problem for those related. In this case, this decision is entrusted only to the doctors and nurses at the scene. In hospitals where there is an ethics committee, it’s probably best if the committee members (and including those outside the committee) listen to the opinions of many of the staff and then come to a decision. (There is not space in this book to state concretely the ethical standards pertaining to this event, but I think I would like to indicate two points: (1) there is no “cure all” prescription for this problem, and (2) it is still open to consider how an ethics committee works in a hospital.)
    At present there are many contrary opinions to this theory, such as: it’s impossible to secure rooms for attendance in a hospital, that it’s impossible (or undesirable) to increase the workload of hospital staff who are already so busy, that there is no precedent for this kind of treatment, that ICU’s will become disorganised, and that it’s too hard to provide training for nurses. I think that these problems can be overcome depending on how organised and motivated the medical care and nursing is in a hospital. Those who benefit from medical care are, surprisingly, aware of this point.
    In a hospital, and especially considering how tremendously busy the ICU is, it may be wise to create new staff positions to support the family’s attendance of the brain dead person. [53/54] These staff can be present at all kinds of deaths all over a large hospital, not just brain deaths, and can provide psychological support for near death patients as well as their families. If, considering a hospital’s system, it is not possible to arrange this kind of staff, then the first thing that should be done is to change the system gradually until it is.

Implementing attendance as a form of medical treatment

    The above are my suggestions. I want to ask doctors, nurses, and medical administrators to approach the ethical problem of brain death in this manner.
    I hear that, in recent years, in the ICU’s of many large hospitals, the consciousness and attitude of people related to the field of medicine have gradually changed in the way stated previously.
    For example, in the case of a nine-year-old girl who had become brain dead, the following care was given in the ICU in Kyoto First Red Cross Hospital. First, as the aim of nursing, the staff worked to support the family in their acceptance of the child’s death, and also to prevent more medical complications arising and the child’s outward appearance worsening. They moved the child to an individual room, and cleaned and generally cared for the body together with the family, and in particular strove to keep the outward appearance, such as the face, from worsening. “They also took on roles such as listening over and over to memories or words of self reproach, while cleaning the body and arranging the hair of the child with the mother, or just sitting together by the bedside.” Thanks to this, the mother and father were able to tentatively come to terms with the death in around four days. (Haruko Kawada et al. “Noushikanja no Kazoku ga Shi wo Juyou suru made no purosesu to sono Kango (The process of a family accepting the death of a brain dead patient, and related care),” Expert Nurse, vol.3 No.4 April 1987 pp.98-101.) [54/55] Considering this example, Seishi Fukuma says: “It looks as if from now on we’ll enter an age in which medical treatment continues during brain death and cardiac death, and even after death.” This is in harmony with my way of thinking stated up to now. (Round table conference: “Noushi no Kanjasan no Kazoku ni dou Taiou suru ka (How should we respond to the families of brain dead patients?),” Expert Nurse, vol.3 No.4 April 1987 p.107)
    I would like to express my respect for those medical practitioners who are already making continuous efforts in this direction.
    I strongly hope that this trend will become part of the mainstream of medical treatment and nursing in the ICU, and also in general contemporary medicine.
    Finally, let us give simple answers to the three ethical problems of the ICU. The three ethical problems of the ICU were:

1) Is it right to cut off medical treatment and nursing, and artificially accelerate the heart failure of a brain dead person?

2) Who should decide this?

3) What should we do if the family wants medical treatment and nursing for the brain dead person to continue?

    To start with, the first problem. I said previously that in cases where the person in question (the brain dead person) states it as a precondition, and the family agrees, then it is permissible to stop medical treatment and nursing. However there are some conditions on this occasion. They are that, only when the family’s attendance of the brain dead person has been paid sufficient respect, and when it is a previous desire of the brain dead person or the wish of the family, is the decision to artificially accelerate heart failure permissible. Of course, we need to be aware of reasons such as economic limitations, or the removal of organs for transplant, as grounds for hastening this process. [55/56]
    The next problem.The physician in charge should make the decision, firstly based on the previous intention of the brain dead person (that is to say, based on an opinion they expressed while still able to express their thoughts clearly), and secondly based on the wishes of the family. However, there should be more concrete discussion about the issue of who makes this decision. For example: what constitutes a family’s intention? Is the previous intention of the brain dead person really valid? I cannot conduct a deep and thorough examination of this in this book, so it will be necessary to do so at another time.
    I have already talked about the final problem. I think that the medical treatment and nursing that the family wishes for should continue to be carried out by the doctors and nurses for as long as the circumstances permit. This is my way of thinking.


(End of Chapter 2)

>> Go to Chapter 5

*For more information, visit Brain Death and Organ Transplantation in Japan.