We Are Our Brains (52 page)

FIGURE 35.
In 1656, Rembrandt recorded a crucial moment in the public dissection of a criminal in his
Anatomy Lesson of Dr. Deijman.
Surgeon Jan Deijman stands behind the dissected cadaver of “Black Jan,” a Flemish tailor turned thief. Assistant surgeon Gijsbert Calcoen stands patiently holding the top of the skull in which the brain will be deposited. Meanwhile, Dr. Deijman is using a pair of forceps to hold up the falx cerebri, the crescent-shaped membrane that separates the left and right cerebral hemispheres, thus exposing the pineal gland. The protocol required surgeons to do this at the end of an autopsy, because in those days the pineal gland was thought to be the seat of the soul (as taught by Descartes), and as an extra punishment the criminal's soul was made to see how the body had been dissected. Amsterdam Museum.

People are scared stiff of death. For this to change, they need proper information about the last stage of life, long before the time comes to die. In 2002 I responded to the fierce debate about introducing civic integration courses for foreigners—a discussion scarred by xenophobia—by urging the Health Council to make it compulsory for everyone in the Netherlands to do a civic
disintegration
course. At the request of the council's chair I drew up a debating paper on the issue, registered for posterity under the number 655-84. We had an animated discussion, but I wasn't at all surprised that the recommendation
didn't become part of the formal advice given to the government by this respectable body.

Yet I would still very much like to see an “exit course” of this kind set up for the general public and, in an amended form, for trainee doctors. It would cover all of the problems associated with the end of life, like euthanasia, pain relief, palliative sedation, and terminal dehydration. (On this latter point: In their book
Way Out: A Dignified End to Life on Your Own Terms
, Boudewijn Chabot and Stella Braam write that terminal dehydration need not be a terrible form of self-euthanasia if the right preparations are made, the mouth is kept moist, and a doctor provides the necessary medication in the final stage.)

Assisted dying also needs to be discussed. The stance of the Dutch Voluntary Life Foundation (SVL) on this is, “We are entitled to choose our time of death and to obtain the means to achieve this in a humane manner.” The Dutch Association for Voluntary Euthanasia distinguishes three groups whose needs aren't met by the current statutory procedures: people with dementia, chronic psychiatric patients, and old people who feel that their time has come. As far as the first two categories are concerned, the current euthanasia act has been applied in practice and is found to be usable (though doctors will only very exceptionally be prepared to countenance assisted dying in the case of psychiatric patients). However, for people who feel that they have reached the end of their lives but aren't terminally ill, the law needs to be changed. Yvonne van Baarle, former secretary of the Arts Council, set up a group to try to bring this about. We started an online signature campaign calling for this issue to be discussed in the House of Representatives. To our amazement, we collected the forty thousand required signatures within four days. Given the enormous positive interest, it's amazing how much abuse we received; our group was dubbed the “death squad.”

Decisions by patients to refuse treatment (living wills) are also frequently problematic. Although doctors are obligated by law to abide
by such decisions, they almost never do. Yet resuscitation can sometimes be unwise or even, as the Dutch doctor Bert Keizer memorably summed it up, “an extreme form of abuse.” While still an intern, I once saved somebody's life in this way, and I regret it to this day. The patient suffered a heart attack as the nursing staff were wheeling his bed into the ward. I immediately put my newfound knowledge into practice and managed to resuscitate him. Shortly afterward we received his medical file. It turned out that he had a lung carcinoma that had grown into his heart. In the days that followed, I sat by his bed day and night as he struggled for breath, constantly clearing his blocked airways. I could have saved him all of that misery if I hadn't resuscitated him! Things are changing, though, and Ruud Koster, a cardiologist at Amsterdam's Academic Medical Center, has shown that the chances of survival after resuscitation have improved considerably. Indeed, the odds have more than doubled over the last decade, with people now surviving heart attacks in 20 percent of cases. The availability of increasingly effective automatic external defibrillators (AEDs) and better treatment prevent significant brain damage in over half of heart attack survivors. Cooling a patient's body temperature down right after resuscitation can prevent much of the brain damage caused by the release of toxins after a period of oxygen deficiency. And having a heart attack near an AED gives you an optimal chance of survival. There seems to be less and less reason for NVVE members to carry “do not resuscitate” medic alert emblems. On the other side of the coin, in nine cases out of ten, resuscitating a newborn baby for more than ten minutes without a heart response leads to severe brain damage and should therefore be abandoned. How many would-be parents are aware of that?

After death—which, like it or not, is inevitable—you can donate your body “to science,” which means that it will be used for medical students to learn anatomy. There's nothing wrong with that, but if you really want to help science, you'd be better off donating your brain to the Netherlands Brain Bank, which has provided five hundred research groups around the world with brain tissue from over
three thousand postmortems, resulting in hundreds of publications with new insights into neurological and psychiatric disorders (see later in this chapter). It can also be clinically important to consent to a postmortem, which is carried out to establish whether the diagnosis and treatment were correct. At present, such consent is requested at the moment when someone has just died and all the relatives are numb with grief. I was recently present on one such occasion, and it was obvious from the way the trainee internist put the request that he didn't expect the relatives to agree to a postmortem. Indeed, everything he said seemed to militate against it, perhaps because it would save him a lot of work. Doctors are insufficiently trained to discuss this topic, which is especially sensitive when someone has just died. Such a fraught time is of course the worst possible moment to approach the family on this matter, and it's no wonder that the number of postmortems has declined considerably.

Topics that need to be discussed well in advance include brain death, tissue transplants, and the transplant of organs and corneas. Of course the same applies to burial or cremation. Other issues that an exit course would need to cover are Alzheimer's cafés, active donor registration, preparing a body for burial, embalming, coma and related situations (see
chapter 7
), near-death experiences (
chapter 16
), advice on euthanasia, cultural differences affecting the issues surrounding the end of life, the legal aspect of these issues, the molecular biology of life and death (see earlier in this chapter), mummification, non-heart-beating donation, psychological problems at the end of life, and living wills.

So even if there isn't a life after death, death itself gives us a lot to think about. It's so much easier for everyone involved if they know your views on this issue and have plenty of time to discuss them with you. As for me, my brain is going to the Netherlands Brain Bank. If I have time, I will give my colleagues written instructions as to what they should especially look for, along with some technical suggestions on how to go about it, which will undoubtedly irritate them. The rest of my organs and tissue can be used for transplants—that's
if anybody still wants them, because they've seen quite a lot of use already. And if doctors think that a postmortem is useful, they have my consent to perform one. I don't care what happens to the rest of me. That's a matter for my family to decide.

If you have any more suggestions for the exit course, I'd like to hear them. Are you looking forward to it? The course, I mean. For I wish you a healthy and enjoyable life that lasts as long as you want it to.

To find out the cause of brain disorders, you need to study the brain tissue of dead patients. In the late 1970s, however, it took me four years to obtain five clinically well-documented brains of Alzheimer's patients, even though there were one hundred thousand such patients in the Netherlands. This was because they didn't die in a teaching hospital but at home or in nursing homes. And it was impossible to obtain control material, because no one saw any point in carrying out postmortems of patients who didn't have brain disorders. But every piece of brain tissue from a patient with a brain disorder has to be compared with exactly the same piece of tissue from someone of the same age and sex who didn't die of a brain disease, who died at the same time of day, from whom the tissue was obtained at the same interval after death, and so on.

That's why in 1985 I took the initiative to set up the Netherlands Brain Bank (Nederlandse Hersenbank, NHB), which provides researchers with well-documented brain tissue. The neuropathologists of Amsterdam's VU University were involved right from the start. In just over twenty years, the NHB has provided five hundred research projects in twenty-five countries with many tens of thousands of pieces of brain tissue from over three thousand donors
(
www.brainbank.nl
). In 1990 it won an award for providing a good alternative to animal research, and in 2008 Princess Máxima, the wife of the Dutch crown prince, honored it with a visit.

At present, the NHB has two thousand registered donors who have given consent for a postmortem of their brain and for their brain tissue and medical data to be used for research purposes. When a donor dies, his death is established by an independent doctor and the NHB is contacted immediately. The donor has to be transported as quickly as possible, usually within two to six hours, to the VU Hospital for a postmortem. Around seventy pieces of brain tissue are dissected, eight of which will be used to establish the diagnosis. The remaining pieces are frozen at -80°C, cultured, or prepared in some other way and sent to the research groups. What is unique to the NHB is that the tissue is made available so soon after death. This is only possible because donors and their families have completed all of the paperwork in advance and know exactly what will happen when the donor dies. The undertaker, too, knows that speed is of the essence. I was once called by the police, who had stopped a speeding undertaker and were reluctant to believe his story that the deceased needed to be taken to the hospital as quickly as possible. But when another undertaker got stuck in rush-hour traffic, a police officer on a motorcycle escorted him down the hard shoulder with flashing lights.

The donors show great commitment. A donor with MS once called me to say, “I want to see the enemy.” So he came to the brain bank, where we mounted a microscope on his wheelchair table and the director showed him sections of brain tissue from MS patients. We get the strangest requests. Somebody once asked whether a relative could combine NHB donorship with donating organs for transplantation and their body to science. When I asked which relative of his he had in mind, he answered, “My mother-in-law.” He seemed eager to make sure that nothing of her came back! We have also had our fair share of legal problems. In 1990, we launched a campaign to recruit MS donors, which resulted in our being sued by the husband
of someone with MS. He thought that MS wasn't a brain disease but a muscular disease, arguing, “My wife's not mad!” We were also able to reassure a donor who asked if we would postpone the postmortem until her aura had dissipated.

It certainly isn't an easy decision to register as an NHB donor. Sometimes it helps when I tell people that I'm always very reassured to think that, whatever stupid things I say or do while I'm alive, at least my brain will be put to good use by the NHB after I'm dead.

Traditional Chinese medicine has countless remedies that are believed to prolong life. It's also often said of the many delicious dishes eaten in China that the food in question is good for your body or for a certain organ and that it guarantees longevity. When I say that I'm not so much interested in a long life as a good and interesting life, people tend to look a bit bewildered.