Organ Shortage as a Structural Problem in Transplantation Medicine




© Springer International Publishing Switzerland 2016
Ralf J. Jox, Galia Assadi and Georg Marckmann (eds.)Organ Transplantation in Times of Donor ShortageInternational Library of Ethics, Law, and the New Medicine5910.1007/978-3-319-16441-0_12


12. Organ Shortage as a Structural Problem in Transplantation Medicine



Alexandra Manzei 


(1)
University of Augsburg, Augsburg, Germany

 



 

Alexandra Manzei





Prof. Dr. Alexandra Manzei

is Professor for Sociology with the focus on Health Sociology at the Faculty of Philosophy and Social Sciences of Augsburg University, Germany. Her research interests lie in the fields of medical ethics, science and technology studies and social anthropology. Before her studies, she worked as a nurse in an intensive care unit where she cared for brain-dead and comatose patients.

 



12.1 Introduction


On November 1, 2012, legislative amendments to the German law governing organ transplantation came into force. From this date forward, the German transplantation law was no longer restricted to regulating the removal and donation of human organs and tissues. Instead, it is now declared purpose of the law “to promote the willingness to donate organs” (§ 1, (1) TGP). The amendments are intended to solve a problem which is typical not only for Germany: the problem of supply shortage in transplantation medicine, which is usually referred to as organ shortage. In the wake of this change in legislation, a lot of money is being spent on advertising to encourage people to sign a donor card—a measure which is considered as helpful for increasing the number of donor organs available for transplant. While many aspects of transplantation medicine are currently controversial in Germany, due to the scandals that occurred there in 2012,1 this measure taken for itself is entirely beyond dispute: it seems to be unquestionable that the problem of organ shortage could be solved by increasing the number of donor card holders. The underlying idea is that if there were enough donor card holders—if, for example, every German citizen would sign a donor card—there would thus be enough organ donors to meet demands. However, what both political actors as well as the public do not realize is that not every donor card holder will become an actual donor. Unlike often suggested by the medical system, it is simply not true that everybody can donate organs after death. Actually, there is only a very small group of patients who is able to donate vital organs at all: until a few years ago, and in most countries worldwide, only patients who die after a complete brain failure—the so called brain death—are allowed to become donors for vital organs. But, only a very small number of patients meet this description. According to the German Foundation for Organ Transplantation there are approximately 2000 brain dead people in Germany per year, other studies speak of up to 3000–4000 brain dead patients. Yet, measured against the number of patients who are waiting for an organ (which is about 11,000 in Germany), and due to the fact that normally not every organ is transplantable, it is certain that there will never be enough organs to supply every needy patient.2

Most people are not aware of these facts, as I have come to learn from the many lectures I have held on this subject in the last years. Due to an inadequate information policy over the last 20 years, which equates brain death with the death of the human being, most people—and not only medical laypeople—believe that they could donate organs even after lying in the morgue for 1 or 2 days. Of course this is not possible. Organs of a corpse are not transplantable, as they would poison the recipient. The reason for this false assumption is not only a lack of information or ignorance. Moreover, it is the equation of brain failure with the death of a human being itself—the so called brain death concept—which causes this false assumption. However understandable the equation from an ethical point of view might be, as a consequence it leads to the wrong conclusion: that increasing the number of donor card holders would solve the problem of organ shortage.

In the following I will focus on this problematic assumption and its consequences. I will show that the exclusive orientation of health policy towards increasing the number of donor card holders does not solve the problem of organ shortage. Furthermore, it reinforces the problem by concealing the real reasons for supply shortage in transplantation medicine. These are, first of all, a rapidly growing demand for organs caused by the fact that for an increasing number of diseases, organ transplantation is seen as “the one best way” of therapy. The second reason is the lack of organs brought about by intrinsic problems of the transplantation system itself.

In a first subchapter, I will discuss the fact that not everybody is able to donate organs after death except the very small group of brain dead patients. In a second and third subchapter, I will recount the historical genesis of the brain death concept (which means the equation of the complete and irreversible functional failure of the brain and brainstem with the death of a human being) and outline new scientific doubts concerning this concept. Questioning the brain death concept is—then—a necessary prerequisite for realizing that organ shortage is a structural problem of transplantation medicine. In the fourth subchapter, I will show that the demand for organs is increasing for intrinsic reasons related to the transplantation system and not because of a lack of willingness to donate organs. As a consequence, the rising demand for organs results in morally questionable practices to obtain organs. I will outline a few of these practices in the fifth subchapter. After gaining an understanding of organ shortage in this way—as an unsolvable structural problem of transplantation medicine in its current shape—the article ends with a final plea for the development of alternative forms of medical therapy. If we are to take the fact that there will never be enough organs for all needy patients anyway seriously, we must admit that we must substitute organ transplantation in the long run with medical procedures which do not require organs from living or dying human beings. If we do not do so, the moral pressure on living and dying human beings to serve as an organ and tissue reserve will increase, as well the negative consequences of organ shortage we have sadly become familiar with (e.g., organ trafficking).


12.2 Reasons Why Not Everybody Can Donate Organs After Death


It seems to be generally accepted that the problem of organ shortage could be solved by increasing the willingness to donate organs. This ostensibly proven knowledge remains largely unquestioned by politicians, the media, and the general public. Moreover, it seems to be unthinkable to doubt the relationship between the scarcity of organs and a low willingness to donate organs. Responsible for this taboo is the following argument, which—like some kind of ritual—is pointed out in the preface to almost any discussion on organ transplantation: “11,000 people are waiting for an organ. Each day, three of them die because there are not enough donor organs.” Thus, everybody who dares to question this relationship, or worse, refuses to donate their organs, is deemed as being guilty for the so-called “deaths on the waiting list . For every person that thinks and acts morally, this is of course an intolerable notion—an accusation which nobody is willing to expose themselves to, not even on a theoretical level. At the same time, there seems to be broad skepticism about organ donation throughout society, which has not only become manifest since the number of organ donors has decreased during this past year. For years, there has been an enormous discrepancy between publicly stated acceptance of organ donation and a much lower percentage of donor card holders—and this is not only true of the general population, but also of medical experts. Insofar, there are good and objectively justified reasons to withstand the moral pressure for the time being and challenge the seemingly self-evident relationship between organ shortage and the lack of donor card holders.

The first fact that needs to be emphasized in this context is that people do not die because other people refuse to donate organs at the end of their lives (an accusation which is implied by the mentioned argument). People die because of diseases or old age, or both. People die because human beings are mortal—even the most advanced medicine has not changed this fact until today. However, what modern medicine does change profoundly is the question of when and how a human being dies—and this is where transplantation medicine plays a very special role. Unlike other medical therapies, organ transplantation requires the availability of vital organs from other patients. Therefore, ever since its development in the middle of the twentieth century, organ transplantation is characterized by a moral, legal, and medical dilemma: Human organs are not freely available spare parts, which can be manufactured and sold like an artificial knee joint or a hip endoprosthesis. Human organs are vital parts of the human body. Before they can be used to help a patient in need, they must be removed from another—living or dying—human being. This fact is the real reason of the so-called organ shortage: it is not true that vital organs can be obtained after death as suggested by the information policy of the medical system and by health policy. On the contrary, organs from a normal corpse—cold and stiff—can definitely not be used for transplantation.3 An organ extracted from a dead body would indeed poison the recipient since the decomposition process of the corpse has already begun. Organs used for transplantation have to be vital and must not lack blood supply for a long time. With this in mind, the statements on the donation of “deceased donor organs” or “post mortem organs”, which are propagated in information brochures, must be regarded as misleading. They conceal the fact that organs from a dead body cannot be transplanted.

Hence, it is a wrong conclusion to assume everybody could donate organs after death. Actually, no one can donate organs after death. There is only a very small group of people who are able to donate vital organs anyway: only those individuals who are dying but still have a well-functioning organism—as is the case with brain death—can donate vital organs at all. Thus, in Germany vital organs can and may only be obtained from persons who have officially been declared brain dead. Brain dead people are dying patients who are lying in an intensive care unit and do not exhibit brain activity any longer. For a very short time (only a few hours up to 1 day) the bodies of those patients can be kept alive by receiving artificial respiration. However, the number of patients that actually meet these requirements is rather small. The exact annual number of brain-dead patients in Germany can only be estimated; reliable data is not available. The few German studies on this subject assume that there are up to 3000 to 4000 brain dead patients per year at maximum.4 However, even if all these people were suitable organ donors and all of their organs were transplantable (which usually is not the case), there still would not be enough organs to meet the demand. The Eurotransplant Organisation reported that there were 7919 patients waiting for a kidney in 2012, in Germany.5 In other words, even if each and every German citizen would hold a donor card, there would still remain a rather high number of unprovided patients since—to repeat the argument—not everybody is able to donate vital organs but only very few terminal patients at the threshold between life and death. These structural reasons for supply shortage have been completely ignored by politicians. As long as legislation focuses exclusively on the increasing of the willingness to donate organs, the structural problems of organ shortage remain unnoticed.


12.3 Dead or Dying? The Ambivalence of the Brain Death Concept


Another taboo in the political debate today is the essential ambivalence of the brain death concept as such, i.e., the question whether brain dead people are dead or dying.6 The taboo surrounding this question is a phenomenon which emerged in Germany at the end of the 1990s. During the thirty years before, since the late 1960s, when the state of complete brain failure in intensive care patients was observed for the first time7, the question of whether those patients should be considered as a dead or a dying human being has been the subject of highly controversial discussions—firstly in the medical system and later on in the public as well. Still in the early 1990s, during the preliminary stages of the ratification of the German transplantation law, the conflicts regarding the question when dead occurs culminated in bitter arguments between proponents and opponents of the concept of brain death.8 Hence, there are good reasons why the transplantation law does not answer the question (whether brain dead people are dead or dying) until today. It does not offer a definition of death. Instead, the legislative body shifted the responsibility to defining death to the medical system.9 Although there are statements in the law which seem to define brain death as the death of the human being a closer look shows the opposite.

There are three references in the law where the question of death is mentioned. In one article, the law dictates that prior to the harvesting of an organ, “the death of the organ or tissue donor must be ascertained in accordance with the current state of medical knowledge” (see § 3, [1] TPG). In the subsequent article it is stated that organs must not be obtained before the brain death of the donor is declared (which is described as “an unrecoverable failure of all brain functions in the cerebrum, the cerebellum, and the brain stem” (see § 3, [2] TPG). However, these two requirements are not discussed in relation to one another. It remains unclear whether brain death can be equated with the death of the human being, or not. Furthermore, § 16 TPG specifies that it is the duty of the German Medical Association (Bundesärztekammer) to provide a definition of brain death according to the current state of medical science in the form of guidelines. Correspondingly, the academic advisory council of the German Medical Association states in its Guidelines for the diagnosis of brain death: “In terms of natural and medical sciences a human being is considered dead when brain death has occured” (Deutsches Ärzteblatt 1998). But here, too, no explanation is given as to why the failure of the brain should be considered as equal to the death of a human being.

Whereas this absence of a definition of death—in the transplantation law as well as in the guidelines—at the first glance appears as a fundamental flaw, it is actually an adequate frame to implicitly reflect the ambivalence of the brain death concept. Fundamentally, medical science cannot provide a definition of death. What we understand as death (and as life) is a cultural, societal, or religious question. Medical science can diagnose death, but it cannot define it. In that sense it can be seen as a wise decision of the German legislator to not regulate organ donation strictly in form of the “opt-out-system” (as, for example, Austria or Spain do), meaning that anyone who has not refused would automatically be seen as an organ donor.10 Moreover, the legislature implemented the “opt-in-solution” or, rather, the “expanded assessment solution” (Erweiterte Zustimmungslösung) which means that only those people can become organ donors who themselves (or whose relatives on their behalf) have given explicit consent. In this way, everybody should be given the opportunity to decide for themselves—freely and without pressure—if they can accept the concept of brain death and, under these circumstances, agree to consent to donate their organs at the end of life. This idea expresses the absolute and coercion-free acceptance of the individual right to self-determination. Even today, this still remains as the basis of the new legislation in Germany.

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Aug 1, 2017 | Posted by in General Surgery | Comments Off on Organ Shortage as a Structural Problem in Transplantation Medicine

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