Constructivist Medicine, by Ger Wackers (1994)

This book is about modern medicine: its cognitive content, its technological tool kit and its moral and social order. It is the omnipresence of technology in modern medicine that sets modern medicine off against traditional forms of medicine. Technology is taken to account for the success of an interventionist medical practice. However, it is also technology that is held responsible for the disruption of traditional value systems, for objectionable moral and social consequences. Any attempt to understand modern medicine should take into account the role that science and technology played in its generation. In other words, an understanding of medicine requires an understanding of science and technology. Drawing on recent work in constructivist science and technology studies for the analysis, the empirical core of the book consists of three case studies. The first is on the pre-discovery work on insulin between 1889 en 1921: 32 years of research yielded conflicting experimental evidence and failed attempts to capture the internal secretion of the pancreas. The second case study analyzes the events during the 1952, high mortaility, polio-epidemic in Copenhagen's Blegdamshospital. A free lance working anesthetist's application of manual positive pressure ventilation reduced the mortality rate of bulbar polio from 90 to 15% within a couple of weeks. The third case study deals with the controversy concerning the definition and criteria of human (brain) death. Many of the controversial issues have remained unresolved since the end of the 1960s. Yet, many western countries have adopted some kind of brain related definition of death that can be employed legally in situations where life support systems hinder the diagnosis of death by the traditional criteria, and where consent has been obtained to remove organs for transplantation purposes after the patient's death.

Copies of this PhD-thesis are still available. Mail me if you want to obtain one: g.wackers@tss.unimaas.nl

Summary

Chapter 1: Into the ways of medicine
Chapter 2: The quest for certainty
Chapter 3: Existence, presence, identity and performance. Insulin: from hypothesis to standardization
Chapter 4: Theaters of truth and competence. Intermittent positive pressure respiration during the 1952 polio-epidemic in Copenhagen
Chapter 5: Death in the skull. Re-negotiating the end of human life
Chapter 6: Programs of action

Chapter 1: Into the ways of medicine

This study is about modern medicine's cognitive content, its technological tool kit and its moral and social order. It is the omnipresence of technology in modern medicine that sets modern medicine off against traditional forms of medicine. Technology is taken to account for the success of an interventionist medical practice. However, it is also technology that is held responsible for the disruption of traditional value systems, for objectionable moral and social consequences. Any attempt to understand the current shape of modern medicine - its knowledge, its technologies, the pattern and course of moral disputes - should take into account the role that science and technology played in its generation. In other words, an understanding of medicine requires an understanding of science and technology.

This study does not defend medicine's virtues. Medicine has champions enough. Nor does it join the ranks of critics who apply ethical theories or societal value systems to pass judgement about modern medicine's impact on man and society. Recognizing both the excitement and optimism expressed by witnesses and commentators of important, often life saving achievements, and the genuine concern and pessimism expressed by medicine's critics, this study does not adopt any of these evaluations as a priori assumptions about the nature of modern medicine. Rather than resorting to notions of scientific method and rationality to explain medicine's success, the description and the analysis in this study focus on the hands-on work of scientists, physicians and a variety of other actors in co-producing medicine's cognitive, technological, moral and social order. Addressing both issues of change and durability, leading questions in this study are: What kind of achievement are scientific discoveries and technological innovations? In what terms can we most plausibly account for them? How do technological achievements transform the content of medical knowledge, and how do they transform medicine's moral and social order? How can we account for simultaneous cognitive, technological and social changes on the one hand, and for the undeniable durability and obduracy of knowledge, technologies and moral principles on the other hand? How come that a technology that is life-saving in one setting, becomes highly problematic in another setting only a few years later? Why is it that academic medical ethics often operates like a fire brigade, rushing from one (moral) fire to another, always lagging behind scientific and technological developments and primarily dealing with ethical issues arising from the use of medical technologies that have already been introduced? How come that often the moral and political controversy is in the public domain, the opponents in the dispute being outsiders? How are new medical practices established despite the fact that the involved technologies still are very controversial?

Chapter 1 sets out to explain these general aims of the book. Starting off with three different `scenes', highlighting achievements and dilemmas at different times in different places, chapter 1 provides flashbacks into particular episodes in the history of modern medicine, while at the same time providing a preview of the three case studies that make up the empirical core of this study: the pre-discovery work on insulin, the 1952 polio-epidemic in Copenhagen, and the debate on brain death. Chapter 1 also provides a brief outline of developments in the field of constructivist science and technology studies, establishing this body of work as an important resource for the account of modern medicine developed in subsequent chapters. Pioneered in the 1970s by British scholars, sociologists made the bold claim that the technical content of scientific knowledge was amenable to sociological investigation and explanation. For the first time in the history of sociological thought scholars embarked on a sustained program of empirical research subjecting natural and scientific knowledge to the same scrutiny which had long been brought to bear on other systems of beliefs, such as religious or political thought. This new, relativist program of inquiry in the sociology of scientific knowledge was concerned with `how certain views about the physical and mathematical world come to count as correct within a society, rather than how a society can be arranged so that truth will emerge'. It was concerned with the `social construction' of scientific knowledge. In addition to these sociological approaches to knowledge-making, the 1970s and the 1980s also saw the emergence of an interest in a new type of technology studies with similar explanatory aims. These studies were concerned with the social factors that shape technological change, rather than with the effects or impact of technology on society. Of the various approaches within the field of constructivist science and technology studies this study draws most on actor-network or translation theory developed by scholars like Bruno Latour, Michel Callon and John Law. They share with other scholars in constructivist science and technology studies a focus on the work and strategies employed by a variety of actors engaged in controversies, or in overcoming resistances to the implementation of new sociotechnical practices. The specific shape of a sociotechnical practice is considered to be the (temporarily) stabilized result of an ongoing process of change fuelled by actors' unflagging hands-on work to overcome `conflict, difference or resistance'. This concern with the processes through which scientific knowledge and technologies are constructed reflects what is considered to be the proper job for the analyst: to find the sources and strategies of certainty and obduracy. It is the project of constructivist science and technology studies to work out in what sense and to what degree we can speak coherently of knowledge as being rooted in the concrete, hands-on work of participants working in a particular time and culture. This study attempts to work out the sources and strategies through which new propositions and entities (about the existence of certain substances or about the end of human life, new interpretations of clinical conditions or laboratory results, new technologies, etcetera) are invested with so much certainty that they become a seemingly inexorable part of the world's (cognitive, technological or social) order; at the expense of `old' truths and ways of seeing or doing things.

Chapter 2: The quest for certainty

Chapter 2 roughly falls into two parts. In the first part some space is devoted to the most basic, epistemological tenet of a constructivist approach, namely that `reality' is the stabilized result of concrete work in scientific and technological practices. This rather counterintuitive claim amounts to an inversion of the traditional epistemological position in which reality is a pre-existent entity of which science produces theories and representations. In this latter view, scientific representations of the world can be more or less correct. The problem, however, is how one can know for certain that one scientific representation is better than another. How, in other words, the certainty with which we hold scientific knowledge to be true can be grounded in reality. The first part of the second chapter speaks primarily to health care practitioners and philosophers of medicine who find this inversion problematic. Rather than addressing this issue in epistemological terms, chapter 2 discusses how philosophers of medicine have tried to grasp the notion of a disease in essentialist, biological and evolutionary concepts of disease. On the one hand, philosophers have criticized the `naive' essentialist concept of disease that underlies the familiar image of medical science uncovering more and more aspects of diseases, their causes and the pathophysiological mechanism through which they work. While recognizing the conventional nature of scientific knowledge about diseases, they fail, however, to provide precise accounts of how this socially produced scientific knowledge relates to unchanging, or even evolving diseases in the world. It is argued that a constructivist approach is an interesting way out of this long standing philosophical quandary. Chapter 2 makes this turn to constructivism by juxtaposing `traditional' and constructivist views on discoveries and on medical imaging. Although a constructivist approach suggests one to give up attempts to justify the certainty with which we hold knowledge to be true, it will provide a better understanding of how that certainty is produced and maintained. Finally, chapter 2 introduces some of the constructivist, translation-theoretical notions that are employed in subsequent chapters. They are introduced, not as a full-blown theoretical framework, but as a set of sensitizing notions that are fruitful in the exploration of the empirical material and the analysis of the various case-studies. The first of these sensitizing concepts is the notion of mute inscriptions. The notion of inscriptions refers to artificially produced numbers, lines and images inscribed on sheets of paper or photographic emulsions in a laboratory setting. These inscriptions are considered to be durable records in which aspects of the world have been captured. In this study, inscriptions is used in a broader sense to encompass both transient phenomena or symptoms that are considered to be expressions of an underlying disease, as well as inscriptions on durable media. Hence, the notion of inscriptions encompasses also non-artificially produced `inscriptions' like anatomic changes observed in a patient's dead body during autopsy. Inscriptions are the raw material scientists and physicians work with. When gathered in one place inscriptions obtained in different places, at different times, can be combined for comparison, classification, statistical analysis, superimposement, subtraction and graphic presentation. Inscriptions can be made part of a written text and reproduced. Pictures, tables and graphs in a text are not simple `illustrations' of that text. They are devices employed by the author to make the text strong enough to resist dissent. In other words, it is inscriptions scientists have to make sense of and which they use in communication with others. However, inscriptions are mute, they do not speak for themselves. They have to be translated. They need somebody to speak for them. This is the second important concept introduced in chapter 2: the notion of a spokesperson who translates mute inscriptions. Scientists and physicians act as spokespersons for inscriptions. They translate entities that do not have an articulate language, and as such they act as their representative. Simultaneously scientists speak for the entities that are assumed to be represented by the inscriptions, for the world behind the inscriptions. The central issue, of course, is how scientists and physicians arrive at `their translation'. The de novo translation of mute inscriptions forms the root of the translation-theoretical account developed in this study, in which translation is first of all conceived as a problem, and as an endeavour that may fail or succeed. The problem of translating is one of providing a plausible, persuasive interpretation of mute inscriptions. It is also a problem of persuading others to accept the interpretation proposed and to act accordingly. The analysis is concerned with all of the process by which something (inscriptions, images, recordings, cognitive or moral propositions, technologies) is invested with so much certainty, hardness, obduracy, that it becomes a seemingly inexorable part of the world's order. It is not only concerned with discursive forms of persuasion. Since all action and activity is situated, the analysis also comprises unintended, contingent and non-linguistic aspects of persuasive situations, as well as the work that has to be done to develop and maintain the practices providing stability. Rather than adhering to an (in the end) unjustifiable belief in pre-existent reality as a foundation for scientific knowledge, a constructivist approach and a translation-theoretical account will augment our understanding of how certainty in medicine is produced. It will emphasize the situated and collective work of people to explain the shape of modern medicine, rather than recurring to the operation of an instrumental rationality to explain either the success or the shortcomings of medical science and technology.

Chapters 3, 4 and 5 constitute the empirical core of this book. To allow for a successive development of the argument through these chapters, they each emphasize different aspects of medical practice. One criterium for their selection was that, taken together, they should cover a wide enough variety of practices, varying from experimental laboratory work to clinical diagnostic and therapeutic work, from the hand work of handling, animals, equipment and patients to the hand work of writing and arguing in articles and books. Another criterium for the selection of these three case studies was the occurrence of profound, multi-faceted changes of medical practices. Situations and periods were selected in which simultaneous changes occurred in scientific knowledge, in diagnostic and therapeutic technologies and capabilities, in moral perceptions and evaluations, in disciplinary and institutional organizations.

Chapter 3: Existence, presence, identity and performance. Insulin: from hypothesis to standardization

Chapter 3 deals with the (pre-)discovery work on insulin between 1889 en 1926. According to the canons of medical history insulin was discovered in 1921 by a Canadian research group in Toronto. The importance of this discovery was widely recognized. The 1923 Nobel Prize in medicine and physiology was awarded to two of the members of the team, Banting and Macleod. For the first time insulin provided physicians with an effective therapy for diabetes mellitus. In its severest forms diabetes mellitus had been a unremediable, lethal disease. However, the recognized discovery of insulin is only the turning point at which a long period of doubt and uncertainty about the very existence and identity of insulin ended. This period had lasted for 32 years since Minkowski's first formulation of a theory about the pancreatic origin of diabetes mellitus.

Chapter 3 describes Minkowski's experimental work on dogs in considerable detail. In 1889 Oscar Minkowski, working in the laboratory of the Medical Clinic of the University of Strassbourg operated on a dog and took out its pancreas. The operation was intended to demonstrate the feasibility of total pancreatectomies as an experimental method for studying the digestion of food in the gut in the absence of pancreatic juice. On the day after the operation Minkowski noticed that the dog passed a lot of urine. The urine contained 12% sugar. Minkowski recognized that the dog had some kind of experimental diabetes. Exploring the role of the pancreas in carbohydrate metabolism, Minkowski designed a series of experiments involving total and partial pancreatectomies, and combined transplantation and extirpation experiments. Minkowski designed these experiments both to improve the post-operative survival of the dogs and to rule out alternative explanations for the appearance of diabetes after the pancreatectomy. At the time, only the nervous system was recognized by leading diabetologists as being able to influence the function of tissues at a distance. The diabetes following the pancreatectomy would, in this view, be due to the extensive damage to the nervous system resulting from the operation, rather than to the removal of the pancreas. Minkowski, extirpated the whole pancreas, or parts of it, leaving the rest in situ. Or he transplanted a small part of the pancreas on a mesenteric pedicle into a subcutaneous pouch, removing the rest of the pancreas in a second operation. No diabetes developed as long as the transplant was viable. Minkowski exposed and ligated the transplant's blood vessels, leaving the rest of pedicle's tissues unimpaired; diabetes developed. Having effectively destroyed the transplant's connections to the gut, by which route other than through the blood flowing through these blood vessels could the pancreatic transplant exert its influence on sugar metabolism in distant tissues? The design of these experiments very much shaped Minkowski's translation of these mute inscriptions, that is, his hypothesis (pro)posing the existence of an internal secretion produced in the pancreas and secreted into the blood.

Minkowski's work caught the interest of a number of researchers working in different scientific disciplines. Pathologists and embryologists argued that the hypothetical internal secretion might be produced in the groups of cells described by Langerhans in 1869, Langerhans' islands. Laguesse proposed to call the hypothetical active principle insulin. Because of the extreme vascularity of Langerhans islands, physiologists like Schäfer argued that the pancreas contained a (ductless) gland within a gland. However, one of the most appealing aspects of the internal secretion theory for the explanation of pancreatic diabetes was that it suggested a program of action for the successful treatment of diabetes mellitus in humans: if Minkowksi was right, it should be possible to use the internal secretion in fresh pancreatic tissue of animals to substitute the deficiency in human diabetics.

The principle of substitution therapy was easy to understand. The practice, however, was obstinate. Minkowski's experiments did not allow any conclusion concerning the chemical nature or physical properties of the hypothetical internal secretion. Furthermore, there was the question what had to count as success. No biological assay was available yet. When was the administration of pancreatic tissue (extracts) considered to be effective? The obvious goal of the treatment was the alleviation of diabetic symptoms, that is, reduction of the glycosuria, improvement of the general condition, recovery from diabetic coma etc. But, how soon should the effect be visible: momentarily, within a couple of hours, the next day, the next week? And, how long should it last: a couple of hours, a day, a week or for ever? In chapter 3 this problem is exemplified in the work of the German physician Georg Ludwig Zuelzer, working in the first decade of the 20th century. In one instance Zuelzer injected a sample of pancreatic extract in pancreatectomized animals. The injection was unexpectedly followed by severe convulsions. Zuelzer had never seen a reaction like that before, neither in experimental animals nor in human diabetics. Zuelzer attributed these convulsions to some kind of poison in the extract: copper from the copper containers used for extraction. In Zuelzer's view these convulsions were not a property of the sought for pancreatic internal secretion.

In 1921-1922 the work of the Banting, Best, MacLeod and Collip in Toronto was imbued with the same kind of uncertainty concerning physical, chemical and biological properties of the sought for substance. In laboratory animals these researchers were able to add some new items to the list of biological activities that their pancreatic extracts were able to perform: reduction of blood sugar in normal rabbits, the restoration of glycogen formation in pancreatectomized dogs, the inducement of a hypoglycemic reaction in rabbits, characterized by convulsive seizures. Insulin was taking shape in the local settings of the research laboratory. The most persuasive demonstration of insulin's existence, and its presence in the extract, was the successful treatment of Leonard Thompson, a fourteen year old diabetic boy, reduced to skin and bones as a result of Allen's dietary regime, who had reached the final stage of the disease, sliding away into death if nothing else could be done. Glycosuria almost disappeared. The boy's clinical condition improved too. In the months and years to follow large scale productions facilities were established in Canada, the US, but also in Great Britain and Denmark. Problems relating to differences in potency between various batches of pancreatic extract were solved through international standardization procedures.

Successful treatment of experimental and human diabetes mellitus by means of a pancreatic extract provided a powerful argument for the existence of an internal secretion of the pancreas. Until its effect could be practically demonstrated the internal secretion was, despite the experimental evidence no more than a good looking hypothesis. Scientists who believed in the existence of insulin had to establish its presence in the pancreatic extract and to define its identity. Experimental scientists working on anti-diabetic pancreatic extracts had to convince themselves of the existence of the substance. Secondly, they had to convince others that it existed. Thirdly, they had to make sure the substance performed its existence, presence and identity in other places in the scientists' absence. In the wake of the `discovery' not only insulin stabilized as an entity in the world and as a reliable and effective technology, the pancreas and the disease, diabetes mellitus, had changed too. Thus, in chapter 3, emphasis is on the science, on the dilemma of insulin's existence, presence and identity, and the resolution of this dilemma in the `discovery' of insulin and the establishment of a worldwide network of new industrial organizations and institutions set up for the production, distribution and international standardization of insulin.

Chapter 4: Theaters of truth and competence. Intermittent positive pressure respiration during the 1952 polio-epidemic in Copenhagen

Chapter 4 analyzes the events during the 1952 polio-epidemic in Copenhagen. Emphasis in chapter 4 is on technological and therapeutic innovation in a Danish hospital specialized in the treatment of infectious diseases, where, in the fall of 1952, the medical staff had to cope with a high mortality epidemic of poliomyelitis. The severity of the 1952 polio-epidemic in Copenhagen was unprecedented in the history of the city. It was the severest ever for several reasons. The number of cases of poliomyelitis, in which the diagnosis was verified, requiring admission to hospital and treatment, was higher than ever. Although the majority of patients was under the age of fifteen, the 1952 epidemic distinguished itself from previous epidemics through the relatively high attack rate among adults. Furthermore, the incidence of involvement of the upper part of the central nervous system (bulbar polio) surpassed all previous experience. Blegdamshospital served as a the polio-center for the metropolitan area of Copenhagen and the eastern parts of Denmark.

Epidemics often relentlessly expose shortcomings in the health care system and existing therapeutic regimes. They tend to cast doubt about the truth of accepted knowledge and the effectivity and adequateness of technologies. Mortality among patients who were admitted to the hospital with so called bulbar polio was approximately 90 %. With one `iron lung' (Emerson) and six `cuirass respirators' at their disposal they were not nearly adequately equipped to meet an emergency of such vast proportions. The breakthrough in this dramatic situation came not from the hospital's medical staff and specialists, but from an outsider, a free lance working anesthetist, Bjørn Ibsen, who was not even affiliated to the hospital. Ibsen examined some polio patients on the hospital's wards, he studied patients' records and examined four patients at the autopsy room who had succumbed to the disruptive consequences of bulbar poliomyelitis. Patients with respiratory and/or bulbar polio felt as if they were suffocating from lack of air and drowning in their own secretions which they could not swallow down. The lack of oxygen which resulted from the respiratory insufficiency produced the foul blue skin color known as cyanosis. In addition to these symptoms the final stage of the disease was characterized by high fever, sometimes more than 40°C, a clammy skin, high blood pressure, and finally, a high total CO2 content in plasma. Blegdamshospital's physicians considered the high total CO2 content to indicate a metabolic alkalosis. The lungs of the patients in the autopsy room showed some degree of atelectasis, but, in Ibsen's view, not sufficient to make adequate ventilation impossible. Patients with severe respiratory insufficiency were treated in negative pressure respirators. Oxygen was given to counteract cyanosis and restore skin color to normal. These patients were well oxygenated due to the oxygen supply. Yet, they became unconscious and died. On the basis of his findings Ibsen drew some remarkable conclusions which were in disagreement with local clinical interpretations, prevalent in Blegdamshospital. Most of the symptoms and abnormal laboratory results characterizing the final stage of bulbar polio were usually considered to be due to the neurological damage caused by the virus infection in the central nervous system. Ibsen attributed the high blood pressure and the high total CO2 content in plasma to an accumulation of carbon dioxide in the patients blood. The high total CO2 content was, according to Ibsen, not an expression of a metabolic alkalosis but it indicated, quite to the contrary, a respiratory acidosis: which in physiological terms is exactly the opposite. Blegdamshospital's physicians had not recognized the role of CO2 accumulation in the production of the symptoms, and as a result of that CO2 accumulation had not been treated. According to Ibsen, patients died from the consequences of inadequate ventilation. Ibsen proposed a new treatment consisting of manual positive pressure ventilation through a tracheostomy. Chapter 4 describes in detail how his proposal was met with skepticism, but that he was given the benefit of the doubt. Arrangements were made for Ibsen to apply his proposed treatment to one of the patients: a twelve year old girl who was in a very bad condition, with paralysis of all four extremities, gasping for breath and drowning in her own secretions. Her temperature was 40,2sC. She was cyanotic and sweating. Despite good endotracheal suction Ibsen was not able to inflate the girl's lung properly which he thought partly to be due to secretions obstructing airways and partly to bronchospasm resulting from the manipulations during the operation and subsequent suction. In this desperate situation Ibsen decided to give her 100 mg of Pentothal intravenously to make her stop struggling. The girl collapsed immediately. Her own respiration stopped. Now he was able to ventilate the girl properly. The removal of the excess CO2 from the blood contributed to the drop in blood pressure, which was treated with plasma replacing infusions. Ibsen succeeded in stabilizing the girl's condition. The girl's skin color returned to normal - without the supply of extra oxygen. Blood pressure was restored to normal too. This twelve year old girl was the first patient during this polio epidemic who survived as a result of a medical intervention. Following Ibsen's demonstration of the effectiveness and superiority of manual positive pressure ventilation in the treatment of bulbar poliomyelitis Lassen, chief physician at Blegdamshospital, decided immediately to apply this `emergency' treatment to all patients with respiratory insufficiency and swallowing impairment.

The application of manual positive pressure ventilation, reduced the mortality rate of bulbar polio to 15 % within a couple of weeks. This was the beginning of the end of negative pressure ventilators (iron lungs and cuirass respirators). A new dividing boundary was traced through the `old' clinical syndrome of bulbar polio. The `old' irremediable disease was divided in a lethal but remediable `disease' of carbon dioxide accumulation and a viral infection of motor centers in the spinal cord and brain stem, causing transient paralysis of the muscles involved in swallowing and breathing. The former was a ventilation problem. The latter was no longer lethal when adequate ventilation could be maintained by means of positive pressure ventilation. The anesthetist's successful intervention during this polio-epidemic gave impetus to the re-evaluation of anesthesiology's status as a medical discipline.

Chapter 4 analyzes the rhetorical characteristics of these quick and radical changes in terms of the perceptive immediacy of the surviving girl, aided by the availability of a new device to measure carbon dioxide in expired air. This turned Blegdamshospital and the epidemic into a theater of truth and competence where Ibsen proved the plausibility of his pathophysiological account, displayed his own competence and skill as an anesthetist, and representing the discipline, the competence and skill that anesthesiologists in general could offer outside their traditional domain of the operating theater. Ibsen also displayed the effectiveness and superiority of intermittent positive pressure ventilation over negative pressure ventilation. Already during the epidemic in Copenhagen, and soon after, in Scandinavia, as well as in England and Germany, mechanical positive pressure respirators were designed, produced and released with an incredible speed, consigning the tank or body respirator to `the limbo of obsolescence'.

Chapter 5: Death in the skull. Re-negotiating the end of human life

Chapter 5 deals with the controversy concerning the definition and criteria of human (brain) death. The positive pressure respirator which received an enormous impetus through its successful deployment in the 1952 polio-epidemic in Copenhagen, became the centerpiece of the respiration centers and intensive care units that where subsequently established. It also became the symbol for modern medicine's `not-allowing-people-to-die'. The development, during the 1950s and 1960s, of respiration centers and intensive care units, of closed-chest cardio-pulmonary resuscitation, and of techniques to reduce and modulate the immune response that made solid organ transplantation (kidney, heart, liver) feasible, cast serious doubt on the `old' robustness with which a patient could be said to have died. The old criteria of the irreversible cessation of respiration and circulation did not suffice anymore. Brain related definitions of death were defended, and contested, as well by medical professionals and lawyers as by philosophers. The meaning of brain death, a condition that until the late 1960s was conceived of as the death of the organ brain in an otherwise living patient, shifted and was now to be equated with the death of the human being. It is in this case study that moral and legal issues come to the fore most explicitly, linked to arguments about matters of fact and technological feasibility and reliability. A controversy emerged. People were afraid to be declared death prematurely. Neurologists were accused of `inventing' brain death to facilitate the harvesting of donor organs from patients who, judged by the old criteria, were not yet dead. The various positions in this debate about brain death are far more complex than the simple opposition between traditional heart-lung and new brain related criteria of death. Many of the controversial issues have remained unresolved since the end of the 1960s. Many western countries have adopted some kind of brain related definition of death that can be employed legally in situations where life support systems hinder the diagnosis of death by the traditional criteria, and where consent has been obtained to remove organs for transplantation purposes after the patient's death. No closure of the controversy on brain death has occurred, yet legally endorsed practices of declaring people with dead brains dead have been established.

Chapter 5 examines in detail the various proposals for a redefinition of the end of human life, which can be grouped into four positions, three of which are brain-related: the traditional definition of `total death', brain stem death, whole brain death and neocortical death. These definitions of death do not only propose a link between human death on the one hand, and the cessation of functional activity in specified places in the body on the other. They also try to define or trace boundaries between what is allowable and what is not; when and how somebody should be treated as a living person, and when somebody may be treated as a corps, now and in the future. Hence, each position invokes different future medical practices and contain, in other words, different programs of action. Hence, definitions of death establish heterogenous associations of cognitive, moral, social and technical matters in an attempt to (re)shape medical practices. In the description of the various definitions of death, emphasis is on how these definitions distribute ontological, epistemological, moral and legal status differently. This is the sense in which the notion of a definition is used in this chapter, rather than as pertaining to a statement expressing the essential nature of something.
Chapter 5 then proceeds by describing how, in the Netherlands, the controversy on the redefinition of death has been partitioned. She is not everywhere anymore. Usually she is not in intensive care units, not in the private domains of medical practice. If anywhere, the controversy is in the public domain of the philosophical, ethical or legal literature or in public media like newspapers and television programs, where she flares up from time to time. What has taken place is a partitioning, an exclusion of controversy, doubt, uncertainty, and limitless negotiability into the public domain. This resulted in the establishment of a relatively stable, `doubt-free' private space where people can pursue their business. Between the inside and the outside there is a horizon of relevance. The description of this process is not concerned with the professional, personal or practical reasons various people might have to adopt one or the other definition of death. What counts is which choices eventually are made in specific documents (health council reports, bills of law, etc.), that had as an effect that an inside/outside or private/public boundary was formed. Emphasis, in this specific case, is on legal and semi-legal documents, leaving aside financial and other practical arrangements that were made.
Early statements on brain death were fairly vague. Notion like brain death, `coma dépassé' and irreversible coma were used almost synonymous. The differential importance of the brain stem or the neocortex with respect to the whole brain was not (yet) recognized. Neither was there a standardized set of procedures by which the irremediable destruction of the brain, and hence, brain death could be determined. Despite its vagueness the notion of brain death seemed to be robust enough to allow cross-disciplinary communication and discussion about this new way of thinking about the end of human life. On the other hand it was imprecise enough to allow adaption to specific disciplinary interpretations and vocabularies (in medicine, ethics, law). Brain death made sense to the neurophysiologist and biologist in the physician, as well as to the existentialist in the ethicist, as well as to the legislator working on regulations to facilitate organ transplantations. It is argued that the notion of brain death served as a boundary object.

In-house protocols, published almost two decades later, containing the whole brain definition of death and guidelines (check-list) for diagnostic procedures when physicians suspect brain death in a patient, exemplify how the relatively ill-defined and ill-structured notion of brain death became less abstract and well structured in the local settings of hospitals. The protocol structures, standardizes and normalizes the inside of the private space. It defines death as well as each actors role, and it assigns legitimacy of spokesmanship (who can speak for whom or what on which issues). Such co-definition and co-restriction narrows the range of possible actions and practices. It facilitates fact stabilization. Thus, in the local setting of hospitals brain death becomes more of a fact, and less subject and susceptible to the criticism and doubt raised by the ongoing debate in the public domain.

Chapter 6: Programs of action

Chapter 6 provides a resume of the theoretical argument developed in the course of the previous chapters. The notion of a program of action is proposed as the concept that allows comparisons to be made between the various case studies. The term conveys the image of a coherent, detailed plan which has been developed and designed for a particular purpose, for example to provide a particular service or to deal with a particular problem. In this sense, research programs, organ transplantation programs or vaccination programs, but also (proposals for) therapeutic regimes are instances of programs of action. These programs comprise multiple items which relate in specific ways to each other and to the program as a whole. Individual items and the program as a whole are interdependent. Their identity is determined by their mutual relationships. The notion of a program of action also includes overall program goals to which individual items relate.

Two dimensions of the notion of a program are of central importance. First, that a program can be a plan: a plan of events, jobs and activities that are to take place, including the times at which each thing should happen or be done. In this sense, the program of action is a statement assigning roles to various actors. But it has not been executed (yet). This brings us to the second important dimension of a program: its execution, implementation or performance. It is the implementation of the program that gives presence to what the program tries to establish. Performance realizes, gives existence. The capacity to perform programs of action is an important source for the certainty with which we hold knowledge to be true and technologies to be effective.

A program of action is the list of actions (interventions, measurements) performed by the scientists, and of reactions performed by the bodies under observation. Together these actions are considered to define or constitute a particular entity or condition. It is the performance of a particular agreed upon and stable pattern of actions and reactions that establishes or constitutes the identity of an entity.

It is argued that Minkowski is to be credited for the development of the capacity to perform the program of action called pancreatic diabetes. He is to be credited for the elimination, through the design of the program, of all the possible routes through which the pancreas' influence on sugar metabolism might be mediated, all but one: the blood. In the process of acquiring this capacity Minkowski turned what began as an experiment into a demonstration. It is also argued that in 1889 insulin did not exist because nobody had developed the capacity to perform the stable, repeatable program of action that would bring insulin into existence; a program of action that would give perceptible, visual presence and identity to insulin. Between 1889 and 1921 insulin was an entity without a program of action: that is why it was a hypothesis. All attempts to capture the pancreatic internal secretion in an extract can be seen as a struggle to acquire the capacity to develop and perform a program of actions that would unambiguously establish insulin's existence, its presence in an extract and its identity.
In Denmark the program of actions that constituted and gave presence to CO2-accumulation had mainly been performed in research laboratories working on problems of respiratory physiology, and in operating rooms. Prior to 1952, the program had never been performed in Blegdamshospital's clinical wards. Not with the same persuasive force as Ibsen's demonstration on the 12 year old girl.

For each of the four definitions of death discussed in chapter 5 it would be possible to list the diagnostic program of action that would establish the death of a human being. They would be strikingly different though. The diagnostic programs of action that establish total, brain stem, neocortical and whole brain death are intimately related to or are part of other programs at a discursive level. These discursive programs of action provide the verbal and discursive translation of the pattern of inscription produced whenever the diagnostic programs are performed. In the case of various diagnostic programs that establish death, these discursive translations are provided by the definitions of death outlined in chapter 5. These definitions of death are as many discursive programs of action in which scientific knowledge, technological capabilities, moral and legal issues are linked together. Yet, it is argued that, if required, it is possible to account for moral aspects of various programs of actions in terms of Jensen's basic moral principle of the responsibility for the weak. We should be prepared, however, to accept that their is nothing in the actions of people exhibiting solidarity with the weak that makes us necessarily perceive these actions as good or morally responsible. Actions have no intrinsic quality that makes them stand out as a model activity, a paradigmatic example of morally responsible action to be used by people as a standard for commenting on and judging past and future actions. Whether certain programs of action stand out as a standard depends on whether the moral order they presuppose, and the morality of their goals and means, goes unchallenged.

Discursive programs of actions may still be hypothetical or may have been realized. They may have been implemented in one place (laboratory, hospital, country) but not in another. The program of action of brain stem death is implemented in England but not in the Netherlands. The Netherlands have implemented a whole brain definition of death. CO2-accumulation had been realized in the operating theater but not yet in the infectious diseases wards of Blegdamshospital. Thus, in case a program of action has been realized, it is important to ask where it has been realized and where not, and to what extent. Programs of action have a history that stretches from their inception to their final implementation and stabilization. The implementation of new programs of action often requires the collaboration of scientists, physicians, engineers, philosophers, lawyers, etcetera. This implies the coordination of work and the establishment of agreement across disciplinary boundaries. The history of realized programs of action is characterized by a gradual, sometimes abrupt, reduction of indeterminacy, and an increase determinacy. The change from indeterminacy to determinacy is a change from doubt and uncertainty to certainty and obduracy, from hypothesis to fact, from promise and implication to effective therapy.

Finally, it is argued that if there is a general lesson to be learned from this study it must be a strategic one. A constructivist analysis of medicine emphasizes the contingency of medical practices as they are today. This implies that there is no principle reason why medical practices could not be otherwise. At a microlevel specific changes may be forged by the conscious strategies of one or a small number of actors. The overall shape of a medical practice, however, can hardly be conceived of as being the result of explicitly planned and rationally decided action. There were many small actors contributing to medicine's present shape and content. Medicine content and shape, its boundaries with the outside world, are also maintained by the work of many small actors. Hence, a constructivist analysis also emphasizes that it will be hard to change medical practices. For those who are critical of particular practices in the general domain of modern medicine, it is important to consider their relative position vis-à-vis the inside-outside boundary of that practice. For outsiders, whether they are lay people, policymakers or ethicists, it will be difficult to know what exactly is going on within the private space of, for example, research laboratories. For observers and commentators in the public domain developments will not become visible before they move out of the laboratory. This is an important reason why academic medical ethics often operates like a fire brigade, rushing from one (moral) fire to another. It is why they often lag behind scientific and technological developments, primarily dealing with ethical issues arising from the use of medical technologies that have already been introduced. For insiders of the practice this boundary constitutes a horizon of relevance. Those who want to raise issues about new developments at an early stage must be prepared to find a way to get inside. This will not always be possible, because sometimes the inside-outside boundary is very physical in nature.

For those who are concerned about or want to resist the implementation of new programs of action, whether they are ethicists, philosophers, policy makers or physicians, it is important to be aware of the existence of private spaces in laboratories, R&D-departments, and hospitals, where developmental work proceeds relatively sheltered from public scrutiny. It is important to penetrate or destabilize the horizon of relevance in order to be able to interfere with that work and challenge it at an early stage. Those who engage in the debate, irrespective of their original training, must be prepared to step over disciplinary boundaries and also tackle the scientific and technical issues. In stabilized practices cognitive, technical and moral issues are intimately linked and latched onto each other. Each of them may be challenged to induce a softening of the obduracy of the practice as a whole. The choice of the issue to be challenged will be a strategic choice. Subsequently one must be prepared to do the work to (re)construct a new obduracy and certainty. This will also involve work in, and collaboration with people from other disciplines. Programs of action can never be challenged, nor implemented by a single discipline alone.

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