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“There is still a significant need for research“

Brain Death and Organ Donation: “There is still a significant need for research“


Sabine Müller

Doctor Sabine Müller, scientific employee of the project “Neuro SCAN: Ethical and Legal Aspects of Norms in Neuroimaging“ and group leader of the ”Neurophilo- sophy, Neuroethics and Medical Ethics“ task force; © Charité Berlin

Someone who dies of brain death for instance due to an aneurysm, can save lives with his organs – if he, depending on state specifications, owns a organ donor card, has not excluded himself from organ donation or relatives express the probable wishes of the deceased. Yet there are still too few organ donors compared to potential organ recipients.

One possible reason for this reluctance could be the fear of being prematurely declared dead. And in fact this fear seems to be justified at least to some extent, because the question of how brain death is one hundred percent accurately diagnosed is still unanswered, according to Doctor Sabine Müller of the Division of Mind and Brain Research at the Charité – University Medicine Berlin, Germany. Doctor Müller, presently there are about 16,000 people on the Eurotransplant-waiting list to receive a donor organ, 70 percent of which come from Germany alone1. Yet there are fewer donor organs available than are needed, which is why for example the Bundeszentrale für gesundheitliche Aufklärung (The German Federal Center for Health Education) also calls on people to carry an organ donor card, true to the motto: ”Organ donations give life”. They put this into perspective by pointing out: Organ donation kills – namely the donor. And yet it seems to be so easy: Brain death was determined and the organ can then be extracted. Isn’t it like that?

Sabine Müller: There are two different aspects you are addressing here. At first I would agree that organ donors are desperately needed, because there are many ill people with organ failure and in danger of dying. Your statement is therefore correct – organ donors are needed. However, we should more strongly ponder alternatives. Although at the moment transplantation medicine for irreversible organ damage is almost always the treatment of choice, alternative solutions could reduce the lack of organs. This aspect is often neglected in debates. Instead the topic is represented in a way as if you only needed to increase the number of donors and this would solve the problem. They forget that the number of brain dead patients, even if all people were organ donors, would not suffice to meet the demand for organs. In addition, the number of brain dead patients is fortunately declining. This is in part because neurosurgery is continuing to advance and partly because there are improved safety systems in motor vehicles for example. After all, this is something that should be welcomed. This is why technical alternatives should be developed, which by and by make organ donations redundant. On the one hand, “organs grown in the laboratory”, the so-called tissue engineering, should be mentioned here. Here, by growing the patient’s own cells, replacement organs could be created for him. On the other hand, organs that are grown from stem cells are also conceivable. In principle, these could be used for any donor. I think, for the heart area it is promising to develop implantable artificial hearts. I believe the research in this area is on the brink of this option, to where hopefully a human heart transplant in the future can be replaced by an artificial heart. But a brain dead patient does no longer need his organs. Why should you not take these organs without a bad conscience?

Müller: One question is whether the patient is really brain dead. This question refers to diagnostics – meaning whether you can actually always sufficiently and precisely determine if somebody is brain dead. The other question is whether somebody who is brain dead is actually dead. I am skeptical in both instances. At first let me address the issue of diagnostics: In Germany a diagnostic investigation is stipulated, which in essence contains clinical diagnostics. That is to say, it is determined whether apnea exists and whether the brain stem reflexes are still present. What’s more, the physician tries to determine if the patient is conscious and has pain perception. In many other countries, apparative diagnostic methods are mandatory. I think this is actually essential to get information on the brain’s condition. However, in Germany this type of diagnostics is only stipulated for specific patient groups or specific types of brain injuries. I believe this to be insufficient. So it is subject to the brain area damage, whether for example an EEG is required or not?

Müller: That’s correct. If the damage is primarily in the rear of the skull, then ancillary apparative diagnostic methods are necessary. This is also the case for children up to their second birthday. But generally in many other countries, apparative diagnostic methods are mandatory for all patients. This can be an EEG or also an angiography. Recently a journal of nuclear physics published an evaluation of different methods. Single photon emission computed tomography, abbreviated SPECT, was particularly recommended in the article. In 2008 the term brain death was reevaluated in the US by the President's Council on Bioethics. The connection between brain death and physical death was said to be empirically refuted. What was the consequence of this report?

Müller: The report so far has barely been acknowledged in Germany. The responsible authorities officially have not given a statement on the subject yet. So there is no response, neither from the German Medical Association nor from the German Ethics Commission, and no adjustment of guidelines. In contrast, in the US a heated debate ensued. The report largely agrees with critics of the brain-death concept. It is conceded that the empirical findings argue against the previous rationale for equating brain death with death. Up to now it was assumed that immediately after brain death, “actual” death – in the sense of cardiac arrest – would also occur. Today this can no longer be maintained. In one case there even were 14 years between brain death and death. Of course this is an exception and it is also not in the interest of the patient to leave him/her in such a condition for so long. Yet the case shows that brain death is not necessarily followed by final death.

In addition there are cases, where pregnancies were still maintained over several months to deliver healthy babies via Caesarean section. At the same time we know that you cannot mature a fetus in a dead body. After all, this requires a functioning maternal organism, where blood circulation and metabolism are working. And this is the case in brain dead patients. All of these are arguments that brain death and death are not the same. The President‘s Council however did not want to bear the consequences of this realization. After all, this realization offers only two possibilities: Either you prohibit organ extraction from brain dead patients, since they are not dead yet. An organ extraction would thus constitute killing the patient, which of course is not judicially legitimate. Or the laws would have to be adjusted accordingly. Killing brain dead patients would be permitted under these special conditions. However, this would result in ethical and legal objections. In particular, the fear is that this would legitimize assisted suicide.

Drip and heart monitor

© / Marko Volkmar A current study of the University of Lüttich, Belgium2 shows: Most locked-in-patients are happy despite their situation. However, according to regulations on brain death in the United Kingdom these patients could be considered as organ donors. How should transplant medical specialists handle this knowledge?

Müller: I cannot answer this question, you would have to ask a transplant medical specialist. Physicians in Germany surely tell themselves that it is not their fault if this is not handled correctly in Great Britain. You can only hope that physicians in the U.K. also carefully monitor whether somebody is still conscious – even if they abide by the so-called brain stem death criteria. But it’s true, according to the guidelines in the U.K this does not have to be checked. The example of locked-in patients in this respect raises the question of whether the existing criteria are actually adequate.

Müller: You should at least scientifically evaluate them. I think most criteria are merely rules of thumb, a blend of know-how and pragmatic approach. In early 2010, the American Academy of Neurology established that there is no evidence base for the statutory brain death diagnostics. On the one hand this pertains to the observation period all the way to the diagnosis of brain deaths, and on the other hand the type of apparative diagnostics method. We know that there are significant differences between apparative and clinical methods in diagnosis. In 11 percent of cases, one study detected deviations. That is to say, while according to clinical diagnostics the patient is determined to be dead, the apparative diagnostics states that he is still alive. There is still a significant need for research. Could the way out in part be a living donation? This is already possible for kidneys and livers.

Müller: This is definitely a way out. Of course here you have the problem of injuring a healthy person to help a patient. In addition you run the risk of being under social pressure. You need to make sure that people are not forced by their families to donate. We know from countries like Afghanistan or Pakistan for instance, that they practically only have living donations, since the brain death criterion is not acknowledged. Admittedly, generally women are forced to donate for male family members. These are for example women who are not married yet, who can not be married off or also widows – that is to say women who have no societal value in these countries. In contrast, the reverse scenario, meaning a living donation from a man to a woman, rarely ever takes place. And so living donations can be highly problematic. Cases like those of politician Walter Steinmeier, who donated one of his kidneys to his wife, are different. This was a voluntary organ donation and there certainly was no pressure placed on the donor. Article six of the German Transplantation Act is titled "Respect for the dignity of the Organ-and Tissue Donor" and is meant to ensure that the donor is treated with the same medical care and attention as the living patient. Isn’t that contradictory to the existing practice of extracting organs without general anesthesia?

Müller: In my opinion it is. Personally, the question of anesthesia is actually the most important question. The anesthetization of brain dead organ donors is of course an admission that the patient is still alive. After all, the official justification for not doing anesthesia says that it makes no sense to anesthetize a dead person. But if you administer anesthesia and argue that maybe there might be remaining sensation of pain or indisposition, needless to say you admit that the patient is still alive. Actually the issue of anesthesia appears to be of a more philosophical nature in my opinion, because generally during organ extraction an anesthesiologist is present, since the vital functions need to be maintained. Muscle relaxant drugs are also being administered. Of course you are aware of the fact that a conscious patient, who had muscle relaxant drugs administered to him, is completely defenseless, because pain and the resulting anxiety are still perceived. Meanwhile, administration of opiates is also recommended by the German Foundation for Organ Transplantation, abbreviated DSO – albeit not to relieve pain, but to be able to operate easier and suppress the donor’s responses, respectively, which interfere with the surgery. By responses you mean movements for example, though they are attributed to nerve impulses that come from the spinal cord. But can you actually distinguish these responses from conscious reactions? After all, the patients are suffering from brain damage, which inhibits any type of communication.

Müller: I think that we don’t know. Some say that these are just spinal cord reflexes. Others say it’s possible that there still is a sensation of pain. I think you cannot issue a definitive statement in this case. But I think that in case of doubt you should assume a possible sensation of pain. I consider it wrong to deny anesthesia based on philosophical or political reasons, especially since anesthesia in these instances would not be an additional expenditure, because an anesthesiologist is already present in the operating room. So this is just about adding additional drugs that cut off consciousness. This is already mandatory in Switzerland for instance and British anesthesiologists also call for it. That is to say, you can’t generally say that physicians hold that anesthesia is not needed. On the contrary, many anesthesiologists believe that it is necessary. The counter-argument in contrast ultimately always refers to the question of credibility – because if you were to officially order anesthesia, you then give the impression of extracting organs from a living person.

The interview was conducted by Simone Ernst and translated by Elena O’Meara

1. Source: Medienservice March 2011 Techniker Krankenkasse (health insurance): "Organ- und Gewebespende"

2. A survey on self-assessed wellbeing in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority
Bruno MA, Bernheim J, Ledoux D, Pellas F, Demertzi A Laureys S
British Medical Journal - Open (2011)


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