At first sight, this public action can be described as a shift towards more patient autonomy, and a weakening of the professional paternalism of physicians. Our case study aims to analyse the changes in knowledge and in policy and their interplay which occurred especially from 2003 to 2009, although the development of patients’ autonomy as a political request had a long antecedent, which reaches back to the 1980s and the beginnings of the hospice movement and still continues. A crucial prerequisite for this movement was the enormous medical advancement in the treatment of disease and in the saving and prolonging life in the last 40 years. Increasing knowledge of vital functions and increasing technical possibilities of controlling and assisting or even substituting them have created new medical possibilities and blurred the demarcations of life and death Intensive care has expanded into a new medical discipline. A physician states:
“When I began practicing medicine in the late 1970s, an intensive care unit consisted of, that one was able to give artificial respiration to every tenth patient, that one placed an EKG next to the patients, and once per hour measured blood pressure. At that time that was called an intensive care unit. Compare that with today. Today we already have access to many vital parameters; through arterial and venial tubes, through pressure ventilation and through access to many, many life support systems we can access a body and life much more directly” (Voss, 160-166).
Of course the question of personal integrity and self-determination is of increasing importance in the medical encounter in general. Legal and broader cultural changes have made a patient’s veto more likely than it was 40 years ago. The asymmetrical relationship of doctor and patient is not only seen as a solution to medical questions but also as an ethical and legal question and is absorbed by the concept of “informed consent”. This means that decisions about therapy are to be made by doctor and patient in a consensual, cooperative way after the doctor has explained all relevant medical information to the patient. But this mode of consensual decision making is not applicable for treatment situations where the patient is in a condition of enduring unconsciousness, where the patient is no longer able to express himself. In such cases the advance directive gains importance as an organisational regulation tool that prevents patients from heteronomy. An increasing number of people make provisions for such cases by placing on record their decisions regarding the measures to be adopted in these circumstances in an advance directive and/or by nominating a person to be appointed by the court as their representative in a directive as to representation.
The discourse about the advance directive is a normative one and is closely connected to other subjects that are considered “ethical” like that of medically assisted suicide (euthanasia). In the course of the public development the understanding of selfdetermination shifts more and more towards the opinion that people should decide for themselves and can be considered responsible for their choices. One important resource for the question of how end-of-life decisions can be regulated by the instrument of the advance directive is of course professional knowledge. We want to show how this knowledge is transformed into normative political claims and how the political discourse and the legal regulation react to the professional knowledge and the medical practice.
To understand how this knowledge is transformed into a viable medical practice the development of the advance directive as an instrument to enable self-determination must be seen within the broader context of the increasing importance of patient’s autonomy in general.
What appears today as a matter of course that patients have the right to limit the therapy in the case of life-threatening illness is result of a change in the relationship of doctors and patients. “I would say that the will of the patient is also valid, if he can make it clear to me. And if someone says to me, I don’t want you to treat me, then I’d be damned if I treated them” (Voss, 68-70).
To characterize the success story of advance directives as a bottom up process, initiated by patients promoting autonomy would be excessively simplistic and misleading. In fact the public action must be described as a movement resulting from the involvement of professional groups. The hitherto analysed public action of the regulation of advance directives and the third amendment concerning the guardianship law of 2009 was guided and carried out by countless actors: the field of actors is dominated by institutionally organized actors like representatives of the German parliament, members and administration of the German federal government at the time, members of the Bavarian government and its administration, state ethics councils, courts including judges, prosecution and lawyers, furthermore hospice organizations, patient’s rights associations, organizations for consumer protection, physicians’ associations or medical associations, the German lawyers association, and the Christian churches and other Christian organizations. Especially legal, medical and ethical experts play an important role in the public action and are often members of several committees or organisations. Last but not least important groups of actors are patients, family members and doctors in a day-to-day practice of medical care. But patients play an important role as they deliver agitating behaviour which must be integrated in medical and legal practice. A lawyer pictures the following case:
“A patient converses with the doctor a lot. The doctor knows her very well. And she would like to depart this life because she doesn’t want to wait until the she reaches the final stage of cancer. And the doctor discovers that she committed suicide, but isn’t yet dead. And there is a conveniently an advance directive there, and this forbids the doctor from doing anything” (Johnson, 92-96).
From a medical perspective the woman could be saved by emergency measures as she is not yet dead, but the action of the doctor is also connected to a legal question, i.e. if not resuscitating must be treated as denial of assistance or as respecting the patient’s volition. In a lot of cases family members are spectators of the medical practice at the end of a patient’s life. Moreover they are often involved in the process of medical decision making. Family members are confronted with decisions about the patient’s life and dying; they are taking cases to court and they start reflecting about their own dying and formulate advance directives. These kinds of actions on a local level set the ball rolling towards the regulation of end of-life-decisions by advance directives and anchoring its binding-force in law.
As we can see by now, a wide range of societal actors is involved in the public action; professionals and lay-persons, politicians, scientists and others. The borderlines are fading between experts and those who represent certain interests.
"But because I write a considerable amount about it, I believe, which is at any rate also perceived by many who are aware of the issues, that I also have a say in the matter. And in this way it comes without further ado, I would almost say, to conversations. (…) And then there are even further inquiries. And then comes the request of whether you can perhaps help a little with phrasing. (…) That certainly has something to do, I think, with this combination of expert knowledge which is there and a certain media pressure, which can be applied – or political, however you want to put it” (Schmitz, 176-186). "An expert should ideally only be bound to the subject matter. In the circumstance as medical experts of our patients and their families, we are, as it were, the lawyers of those who are entrusted to us. We have to fight for that, but also not with professional tunnel vision" (Mehring, 424-427). Most experts can therefore be characterized as "policy entrepreneurs” as they not only develop political ideas from scientific experience but are also involved in supporting these ideas in a political process.
A special characteristic of the selected case study is not only that certain societal groups seem to be concerned but really everyone, as the question of regulation of end-of-lifedecisions affects aspects of life-conduct. On the one hand, everybody seems to be qualified to take part in the discourse about the importance of advance directives and everyone can speak as an expert about his own life, on the other hand, a lot of expert knowledge is required. Expert knowledge here means not only scientific knowledge but also a kind of expertise about professional, practical knowledge and knowledge about bureaucratic proceedings in courts, hospitals or nursing homes and, if nothing else, knowledge about political opportunities and constraints. Generally speaking, all different positions in the political discussion make use of the same knowledge resources. Expert knowledge is used to identify relevant criteria for the binding-force of advance directives and to explain or deny the need of a legal amendment. These different kinds of knowledge interact in the course of the public action. The regulation of advance directives seems to be a problem which is tangent to different presentations of the problem of end-of-life-decisions. Commissions, committees, working groups - regardless which institution or organization they belong to – are interdisciplinary and cover medical, legal, ethical, and sometimes even political or theological experts. No matter which profession or discipline, particularly those experts that can refer to practical experience in hospitals, hospices, courts etc. seem to make an important contribution to the discussion.
“But that, if you want, is the deciding question, who do I appoint to the leadership of such a commission? It was the decision of Ms. Zypries that she chose Mr. Kutzer. That was a good decision. Because she selected people impartially, at least three, all the others were given. That was really sort of a predetermined group. And he said, completely in the right, I’ll take people from the practice who report something there. Then the commission actually influenced decisively, that was no accident. And their decisions, and maybe it would have gone in the same manner, if instead of me he had nominated someone else. But his decision to get experts primarily from the practice naturally pointed the way ahead” (Mehring, 544-553).
All these different perspectives thereby provide a different knowledge. Legal knowledge is particularly significant and successful in this case study, maybe because it seems to be able to simulate a high level of certainty. A lawyer describes the greed for legal knowledge, which tends to promise uniqueness and to downplay other aspects:
“And I even worked there as an attorney and also noticed that the people were greedy for the attorneys. They want the guard railing where they can steady themselves. So they don’t want to listen to theologians. And the doctor doesn’t want to listen to anything from anywhere. The only thing that interests him is, what am I allowed to do, and where do I make myself culpable. Which was very frustrating for me because it’s about completely different things. And I was always just asked, where do I make myself culpable? And how do I play it safe? So not how do I adhere to the patient’s will and respect that” (Johnson, 103-110). Such legal insecurities or ambiguities are seen as the main reason for the necessity of regulating the application of advance directives by legislation.
Another important knowledge field in the public action is medical knowledge: scientific knowledge and of course practical knowledge about medical routines and standards. Experience with the institutional settings is particularly crucial as a specialist in forensic medicine puts it:
“Yes. Well I think that people who are not confronted with the contemporary state of intensive care units or nursing homes, but rather form their opinions on unfounded ideas, in my opinion they have a deficiency in their opinion formation. Because one must have experienced the concrete situations, in order to be able to judge them" (Jäger, 170-173). In any case, a solid basis of factual medical knowledge seems to be an essential requirement for further considerations regarding end-of-life-decisions. So medical experts first of all provide accurate information about medical procedures and corporal conditions:
“Because, we already sort of talked about it, it’s just without the, the relevant medical case material, also knowledge—what happens if I keep up a treatment, or if I don’t do it anymore, like with forced feeding or something? And what happens when I discontinue the forced feeding? Is it even true, that the people will then starve and die of thirst, like it says in the newspaper? Yeah, what can one do at all for pain treatment for instance?” (Steinberger, 208-215).
In the form of cases, practical medical knowledge gains high credibility: “It was generally talked about, but of course through the physicians, they were very successful palliative physicians, Mr. X, who is also there in our brochure, and Mr. X, who is also a palliative physician in X. There were, I think, two more, someone from the federal medical association and then, then, - - and they of course always said pretty quickly, yes, that can be so and so, but there is this and this case. And then they described a concrete case, and that was of course then, then it’s easier to test the theses on it and to work on it. Of course the very plastic cases - - or XX are in the border situation so and so, and in that case it works like this, and yeah they also had a very good medical scientific background—the people who were there, that’s why it was so helpful” (Steinberger, 153-162).
Cases deliver stories, which can prove different positions, whether for or against a variety of limitations of advance directives. Some doctors report cases of patients who afterwards were grateful for the disregard of their advance directive: “He always told stories where afterwards the people were grateful that they were alive. What should one say to that? (laughs) That, I think, that’s the root for the doctor. To say, I know this better than you do. You’ll be grateful afterwards” (Jung, 310-326). Experience shows that in medical care people in illness often change their mind. The image of a patient in need of help, in fear of illness and death comes into conflict with the precondition of all legal constructions: a constant subject that can be given responsibility for its decisions.
Ethical knowledge here does not mean knowledge in the form of ethical arguments pro or con certain policies but rather a kind of knowledge about how to proceed in discourses about problems that can be marked as “ethical”. End-of-life-decisions and questions regarding their regulation appear to be ethical, as different perspectives on the problem of giving directives in advance seem to be legitimate ones: "But it is an undoubtedly delicate realm, in which ambivalent positions have to be respected. It’s a matter of ethics. And ethics is nothing scientifically stipulated, but rather where truly different opinions and different problems can be expressed, because one believes that that is the correct opinion” (Jäger, 173-177).
Opinions cannot be simply rejected as long they are comprehensible. The plurality itself seems to value communication: “(...) well when you have dealt with this issue for so many years, now over well over ten years [I: Hm], it’s no longer unusual to you. [I: Hm] So I think for me there is nothing unusual there. No and even positions that radically oppose all of this, even that you come into as much contact with and also, I can understand well there are reasons for it, I also believe [I: Hm] that you can have very different positions [I: Hm] on the subject. That’s a part of the plurality of opinion making, which we also have in the church [I:Hm] and I mean, also must have. There is no [I: Hm hm] clear-cut position that says, this and that is right. So an ethical gallery of opinions has to be able to be promoted” (Rade, Z. 418- 427). The strong normative influence of knowledge like that described above, is weakened at the same time by the interdisciplinary production of other opinions and positions21. Therefore an ethical attitude is promoted which questions accepted certainties and routines: "That’s a whole different approach, which medicine still takes, which care can still take, but simply to put itself in question, that’s always a balancing act” (Vogel, 361-363).
Knowledge about political procedures, opportunities and restrictions appear to be of great importance. To organize political majorities a politician has to know where the general political opinion is tending. A draft of the group around the representative Wolfgang Bosbach that proposes a limit of range for the binding-force of advance directives enlarges the conditions under which decisions against life sustaining measurements shall be legally approved: "So we included these areas with the lasting coma or loss of consciousness in order simply to broaden the appeal. (…) For that we surely lost a few of the strict opponents on some points, or won’t gain them. But then the overall goal is plain, to say, better our proposition, which may not be entirely satisfying, than the other, that opens up the whole issue more. That’s then the capacity to compromise, which one has to display to a certain extent” (Röspel, 503-512).
Another important source of knowledge is personal experience, lay knowledge about the medical practice at the end of life: Not only do lay persons in the regular sense make use of such arguments to justify their position, but also experts very often refer to personal experience to explain their opinion: "Personally I believe, that we need legal regulation [I:Hm] in order to have legal certainty in this field. I have personally twice experienced uh with my father-in-law and with another acquaintance, that the doctors, although I put down a valid advance directive, ultimately said: what does that interest me? In my hospital no one dies. Through an advance directive. And I made that very clear, so long as head physicians and doctors can still act, without having to worry about uh some kind of legal or judicial parameters” (Rade, 437-445).
What is crucial: In the course of the public action these different types of knowledge are not only used or applied but translated and transformed in several ways. Two modes of transformation are that by experts and that by media reporting and the staging of cases in the media —political discussions etc. Medical experts, for example translate theoretical considerations into practical questions, like a doctor explains: “The point was, the theoreticians that contemplated how to create a norm that is congruent within a normative system, to show what happens when one uses this thing (laughs) then in practice. That was, I think, the strength of this commission. (…) for example with the famous question of irreversible fatal course, I could (…) demonstrate relatively quickly that life in itself is an irreversible fatal course. And that it is complete nonsense to bring in anything with irreversible fatal course as a boundary. I could even simply bring in some examples (…) I could invalidate this absurdity pretty quickly, and there was very, very quickly no longer any discussion at all. So the question of the socalled range restriction was very quickly off the table in this bout. Because even, as soon as one concerned with practice or allows oneself to be informed by practice, one sees that certain things don’t make any sense” (Mehring, 162-188).
The function of media is usually described as the diffusion of knowledge. Of course that is an important point as we gain most of our knowledge about the world we live in through media communication. But media do not only inform, they also perform. To function as information, knowledge has to be transformed into certain formats. Studies show that the presentation of scientific expertise in TV, for example, does not simply map a scientific discourse but tends to produce the polarity of expertise and opposite standpoints22. Due to its inner logic media presence transforms knowledge into mediapresentable facts and figures by reducing complexity and giving visible labels and addresses. Complex problems are reduced to identifiable positions, which facilitates politicisation, therefore media transformation does not only report political discussions and processes, but also has the potential to induce or put a point on them. In the public action of the regulation of advance directives the heteronomy of standpoints is primarily broken down to dual op-positions.
The ambiguities of the scientific medical expertise are transformed into unambiguity within the media coverage. The multi-perspectivity of scientific positions is boiled down to manageable oppositions. In fact pretty distinct lines of conflict are staged. Labels are built up that suggest a dualism of discursive actors and may be typologized by the supporters of two different bills reforming the living will law in 2009. The liberal deregulators promote the Stünker claim. The social conservative lifesavers proffer the Bosbach claim. The same scheme operates by building specific persons up as labels. These subjects are marked as significant points within a confusing inter-related discursive net. They condense sense and regulate the significance of any positional attribution. They function as a kind of lighthouse for discursive distinctions. The lawyer Klaus Putz is conventionalized as some kind of angel of death. In more than 100 cases Putz made efforts to enforce the patients’ will. So he did in the famous case of Peter K. He - K. - was a vegetative state patient, who had drafted a living will indicating that in this particular case in which he is actually now situated, no life-extending medical measures should be used. The nursing home he lived in denied that living will stating that his mimic reactions lead to the conclusion that he actually had the will to live. Within the subsequent discourse that is literally distilled down to the cause of Peter K., the Deutsche Hospizstiftung accused Putz and the demanding daughter of "Wild-West-Methods". The German newspaper "Die Zeit" reports according to unconfirmed internet sources Putz is even blamed for illegal active euthanasia and stokes the fires semantically further when asking: death as redemption? (cf., ibd.) Only to end up defending Putz. Even an exclusive one-on-two contention for staging this conflict is arranged. Ziegler – Putz’s discursive counterpart – hence has the possibility to ask: "But these people live. They breathe autonomously. You have to hold their noses if you want to kill them". The media presentation of the right morality dealing with dying functions by portraying spectacular cases and showcasing rogues and victims. Generally no coverage – regardless of whether they are against or in favor of his position - therefore misses acclaiming that Putz has been sued for precisely killing his clients, although he always has been discharged by the courts. In the end it seems to be quite clear: he who is against the lifesaving position now has a communicatively marked and therefore visible social address to distinguish from. In this way the legitimation of normativity is gained and enables everyone to continue a moralizing speech.
"An 18-year old teenager noting down, that he never wants to be confined to a wheelchair, may assess the situation differently when he is a 34-year old family man". This mode of speaking is highly suggestive in its pictorial argumentation that literally banks on the experienced knowledge of everyday reality that a change of heart simply happens: in the end it seems absolutely plausible to go along with the conservative doubt, because it is no less than a "controversy about life and death". Scientific expertise is rather blinded out in favour of emotionalizing medical cases. The arguments that are called up function first and foremost as metaphoric images. These pictorial arguments bring the problem of a medical indication to the boil: they suggest definitiveness that in most of the medical cases they talk about is actually not given. Therefore they create a different knowledge about dying. The aesthetic these pictures bring forth resembles a threatening posture. These gloomy pictures insist on cases that can be easily deciphered and therefore generate an enormous momentum. The case of Terri Schiavo was discursively the most potent one, because it focused on the problem of a case providing well documented oral opinions though without any written ordinance. At the same time it is one of the most uncommon ones: "Most of the authors of a living will are older than 60 years. [...] Strangely the debate though revolves around these cases which have little in common with this reality. What should we do with the survivor of a traffic accident that has demanded as a younger person, possibly decades prior, not to be revived if in danger of paraplegia?". Referring to these cases works as a door-opener argument for normative speaking: as a result of its emotionalizing pictures scientific arguing is discriminated against. These pictures mobilize their affective potential rather than medical expertise. All the other extreme cases that media preferred work in the same way. Regardless of whether another persistent vegetative state patient like the causa Peter K. whose lawyer fights for his selfdetermined right to die is cited, or the locked-in syndrome is portrayed as "the worst of all punishments”. Or alternatively the question is prompted if "a recognizable buoyant dementia patient [should] be denied a therapy of pneumonia, just because the depressed churl that he used to be refused to tolerate that?" All these different cases that are reported on are united by a similar media effect: the transported images intensify the fundamental dilemma: the concrete necessity of making a decision vs. the lack of information on the authentic and actual will of the patient. And whilst these metaphoric threatening postures "serve for the affirmation of anyhow unalterable positions" they are so suitable for the media perpetuation of staging confrontational media events. In this manner the problem of dealing with the living will policy can be reduced back to the normative claim for the precisely right set of values.
A media scene, which is characterized by television, mediates information especially through pictures. This is a very direct form of giving information, as pictures produce a kind of immediate plausibility which can not be reached by words. The pictures of Terri Schiavo on TV provoke fright and sympathy and give a new idea about end-of-lifescenarios, or scenarios of not being “alive” but also being unable to die due to medical “omnipotence”. Such pictures or themes appear in reporting and also in media entertainment like movies and therefore shape the idea of dying of the populace.
Exactly this idea of patient’s autonomy appears to be the essential driver of the analysed public action, but a closer look makes it clear that the idea of an autonomously deciding patient itself is a result of developments in an earlier stage of the public action. Sometimes the relationship between doctors and jurists in this context is stylised as the opposition of conservative, paternalist preservers of life and liberal, progressive advocates of the patients’ interests. However, the value of life protection used to be the top priority from the legal point of view before the rapid development of medical opportunities revealed a medical as well as a legal grey area and a lack of knowledge on how to deal with situations which are not covered by the usual professional ethos. A former judge describes the development as follows:
“And when they gave this principle of life preservation legally to the doctors, then they had to take advantage of this new achievement in order to preserve life without regard or without problematizing it—if it was now really desirable for the concerned. So that one can say that the problem was medically initiated, medically initiated through the advance of intensive medicine, which made possible an extension of life to a previously unknown extent. Then came the question at this new level, is it even possible any more, to legally obligate doctors to carry on life extension for as long as medically possible? Or do we not perhaps need to go back behind this basic principle, so that the patient himself can determine how long he will be kept alive. And no longer as it previously was, where they said, the obligation to life at any cost, the patient can’t renounce that either” (Volkers, Z. 129-142).
The orientation towards the patient’s will is a result of new uncertainties where new criteria for decision making at the end of life in a medically, institutionally dominated environment are needed. More and more the distinction between self-determination and determination from outside begins to structure the policy of end-of-life decisions. While especially in the hospice movement the idea of “dying with dignity” as a counterweight to a medically dominated dying was of key importance, now dignity seems to shift the problem only to another level and establish new insecurities that cannot be fully offset by the professional authorities like doctors or judges:
“And the other concerns the not uncommon enmity that many district judges and not only district judges – make out of a preservation of integrity and preservation of dignity. No one is entitled to decide on a certain condition of life as unworthy or worthy except for the concerned themselves. And therefore it’s never about saying we’ll let one die now so that their dignity is restored. There is no situation at all in which a person as such is undignified. Undignified is always just the manipulation of one by another. And I find it is a completely unacceptable perspective under constitutional law for an 85 year-old patient in a vegetative state to say, yes, that is really no longer a condition. Then it is better for him to not live anymore. If he didn’t decide that himself, then it simply doesn’t work”.
Breaking traditional routines and rituals, dying is now increasingly becoming a subject of reflection. What does dying actually stand for? What does it signify? The response to this question is actually the problem the discourse revolves around. In the scope of all problems is the dying subject itself. A subject, that had to be invented first. “But it’s clear in peoples’ minds that there is not this kind of advocate that used to be there. No, according to the new care and health law, it’s clear in peoples’ minds that they have to do something there. And that you cannot die so easily any longer (I and R laugh). [I: Yes, yes, hm] Yes” (Vogel, 80-83). The dying person becomes an active participant within the dying process. In fact the invention of a dying subject first makes a dying person visible, whereas before the dying person was semantically only reasonable as passively suffering an inevitable death. Therefore you cannot die so easily anymore. The (future) patient has to acknowledge himself as a decision maker concerning questions of dying, the sufferer has become a dying subject. Due to the loss of traditional attributions, reflecting about dying becomes a social imposition. Thereby dying turns into a matter of individual decision that is supposed to redeem these new alternatives of dying. The dying patient functions as an agent that is supposed to decide.
The will of the patient is the initial and the terminal discursive point at the same time. In this paradoxical constellation it works as a hinge. On the one hand it guides and informs all initial actions. It starts off the scenographic process by asking, dialoguing and investigating this will. On the other hand it determines all medical actions by binding them to it. His will turns into some kind of ultimate justification because in its untouchable dignity it itself does not have to be justified again. “It has been straightened out by now that in every case the will of the patient has priority at first and that the guardian, if such a person is appointed, or that person who has got the health care proxy has to enforce the will of the patient initially. If there are ambiguous situations regarding what is committed on paper, if the case is really applicable, this process will get started – reconciliation between the guardian, if necessary the judge of guardianship, and the doctor. And then it depends on the socalled discourse, that within this discursive process it is finally determined what to do. The basis and the terminal point is always the will of the patient that he has written down” (Sawohl, 132-141).
In the course of the public action the will of the patient is becoming instructive in an expansive way: not only the binding force of the will fixed in an advance directive shall be guaranteed by law but also the question of how to handle cases where no advance exists is increasingly important in the process of debating. The “presumed will” is becoming decisive for decisions at the end of a patient’s life and has to be investigated by the authorities in charge.
The policy of self-determination in end-of-life-decisions seems to weaken the authority of doctors and the influence of medical knowledge. As a matter of fact, doctors seem to be of less importance as decision-makers, but of growing importance as medical experts with regard to the consultations of drafters of advance directives. As expected especially doctors pledge for consultation as a criterion for a valid advance directive: A practitioner in palliative care expresses the following wish concerning the legal regulation: “Actually my wish would be that an advance directive is only binding 100%, if it is made according to a medical consultation. That’s what I also postulate in my articles. Because, it is right that you should protect people from wrong decisions. It’s wrong to do that by taking away their decision. But it is right to do that by consulting them. That means if a governmental need for protection in the sense of public assistance is postulated here, than I agree, but by consulting people” (Mehring, 285-292).
So medical expertise, in conjunction with the application of advance directives, is of increasing importance. Legal regulation is not to guarantee the patients’ welfare but rather informed self-determination, where the patient’s will is formed and limited by professional consultation.
At first sight, the increasing institutionalization of self-determination in the form of the advance directive seems to trigger a kind of juridification of the medical practice. By coupling medical treatment to legal questions by the construct of the patient’s will, medical knowledge in terms of a medical explanation moves into the foreground. The discourse about the handling of end-of-life decisions in respect to self-determination also induces a process of reformulation of medical standards: "At the fourth phase, which is the most severe impairment in Alzheimer’s or dementia, in my experience people often want something different. Now it is so defined, carefully defined but truly well defined, that if I cannot eat and be fed anymore, if I am no longer in the position to be fed; that is actually the very last phase, when the doctors say— many doctors, not all—a stomach tube is in any event not even medically indicated in this phase anymore” (Jarmer, 194-199). The doctor as decision-maker becomes relevant again in the question of indication, what measures are indicated at all: “A doctor cannot mention in his consultation what he considers not indicated. That is: his decision" (Mehring, 247-248).
Increasing knowledge about legal, ethical and political questions has also initiated a change of the medical practice and increased medical knowledge production about treatments at the end of life. Treatments and therapies that were unquestioned before are now revised and developed: “Knowledge has undoubtedly increased, because there has been a lot more written about it. And it, if something has changed, then for the better: medical practice. The doctors, I believe, are now more sensible than they were in the mid-nineties. Then the installation of a stomach tube was self-evident. Today doctors know that it isn’t so simple anymore. And I also always advise a stomach tube to people, when the stomach tube in itself is a good thing. And when it is questionable, if this stomach tube will ever come out again, so if it can be renounced, then one should do it that way, then give approval to the stomach tube, but limit it. I am under the impression that the stomach tube will be in for three months or six months. But then the agreement expires. And then it has to be reassessed, if the stomach tube is still indicated and if…two things, if it is indicated? And B, if the patient still wants it? And then the dumb idea, that it’s active euthanasia if I turn something off, doesn’t come up anymore. Because then the agreement expires. So through this trick we help ourselves to handle the doubtful cases well. Because it is often not completely clear if the use of a stomach tube isn’t still appropriate—if there is still hope that it will one day be removed. If it is thus, that it will never be removed at all, then it is generally according to today’s view not even medically indicated” (Jarmer, 302-319).
The new law decides strictly between medical indication and juridical will. This focus on the medical indication can also be noticed in a slightly changing practice of dealing with cases: A lawyer describes how the argumentation changes concerning the limitation of therapeutic treatments at the end of life by the increasing focus on medical knowledge and medical standards: “Meanwhile, however we construct our cases completely different than five years ago. We mercilessly ask the doctor systematically: What does the patient have? Which illness does the patient have? Explain it to us. What is damaged? Next question. What can recover? What‘s his prognosis? And now, to come back to the classic cases, in the end the doctor states that he has a severe brain damage, this and this, and realistically that he can’t recover. Everything else belongs to the world of unexpected results or wonders or of the not realistic, as they call it. Ok. Next we ask which goal justifies the current therapy. That’s simply very, very solid medical law. Because you mustn’t do anything without a therapy goal. So what’s your goal? Then he’ll say, we aren’t doing any treatment. Than we say, yes you are! You are doing dietetic treatment. Oh we don’t call that treatment. Then I say but medicine calls that treatment. And that is treatment according to the law. And the policies of the German Medical Association call that treatment. And that is treatment” (Johnson, 380-392).
But in the end, accountable decision makers are needed that shoulder the uncertainties generated by the medical practice. “Now, there is an agreement to put the medical indication in the balance. But in the end that’s kind of subjective, too. Unless it can be objectified, it is still indicated, well it’s not indicated at all in the case of brain death. There nothing is indicated any more as there is really no chance to resuscitate someone brain dead, that’s clear, but there are so many intermediate forms, where surely subjective and economic aspects or is it available at all etc. have some influence. And there we need doctors or other persons in charge that say, I take on the responsibility. We can’t do without that” (Hahne, 730-738).
To sketch out some conclusions here: In the course of the public action different paradigm shifts concerning knowledge and policy occur. The patient as an accountable decision maker, that can be legally and politically addressed is emerging in the course of the developments around the hospice movement, the advancement of jurisdiction and the political discussion about legal regulation. Priorities also shift from protection of life to self-determination as a solution for insecurities produced by the development of medical practice. The influences of politicians as policy makers on knowledge production are various. First and foremost: whatever might be considered as knowledge in the policy making process will be filtered by policy makers for its relevance, i.e. for its usability. Knowledge does not enter politics just by being presented to it as knowledge, but because it can serve special political interests. A first obstacle for knowledge to be accepted as knowledge is the question of whether it fits the respective political programmes, a second, if the knowledge seems effectively and efficiently applicable under the present conditions in the policy field. But as already argued above not only do politicians have to be seen as policy makers, but also organized interest groups and experts. The actions of experts for example are not only guided by scientific interests. Various empirical studies, like one about the level of information judges and doctors have about current law concerning end-of-life-decisions, are induced by political standpoints.
The local case study we chose revolves around the specific ways the decisions resulting from the public action influence end-of-life-practices. How is the reception of the law on the implementation level? Are there consequences of the public action, intentional or unintentional, that only reveal themselves on the level of every-day realization in institutional settings? Of course changes on the local level do not simply result from the amendment of a single law, but from broader changes induced by the continuation of the public action in general. The amendment of the law is only one step in the process of trying to regulate end-of-life-decisions by advance directives. The political goal of the legal regulation of the advance directive as an instrument was to institutionalize self-determination in end-of-life-decisions as well as legal security for the decision making of patients, doctors and courts. On the local level the advance directive has to be integrated into the usual logics and routines and this causes effects that can be described as “unintended”. Such effects are not caused by “errors” or “mistakes” of the policy makers but by the inherent logic of the local contexts.
In the every-day clinical practice the advance directive encounters fundamental limits due to organizational problems. Critical situations become occasions for learning concerning practical application and for generating new solutions beyond the instrument of the advance directive:
“And then you can simply see that the realization of the living will in every-day clinical practice is sometimes quite difficult. So. If, for example, a problem then emerges, a need for action arises in the elevator. A patient on the way back from the OR to the station. The record is – what do I know – yeah… It’s completely clear, he doesn’t want to be revived. If something happens, he wants to die – so – yeah. And then something happens in the elevator. And of course he is revived. And then afterwards a huge fuss is made. How can that be? We made a living will. We copied it. We gave it out everywhere. And then something like this! Yes. There you have to say, okay, that is simply a situation that one cannot foresee. What we learned from that is that living wills have to be capable of being broken. You say, they are only so good – as then also– with a mistake or in an unforeseeable situation to leave room to end any measures which were introduced. So. Yes. And a sort of cycle came about, a learning cycle, where the instrument was always refined a little. And now here at the palliative station we work predominantly with emergency plans and not at all anymore with living wills” (Müller, 104-121).
New standards concerning indication and the formal standardisation of processes in the form of emergency plans start guiding the changing practice, like a practitioner of a palliative ward explains:
“With many of the patients here it is – to be resuscitated – none of them would do that. There is no indication. That would only make it worse. Then I don’t need any living will where it says that in it. That’s this emergency plan – there it says that about resuscitation – so that the doctor sees it when he finds it. But then there is just a free description of – my wishes and ideas. And then there is a plan, an emergency plan for medicaments which is reasonable, if any crises arise that one can foresee. Which one often cannot. But then to have a text where it says, I have a metastasized tumour – this and this and this. In no case, when approaching death, would I want to be unnecessarily afflicted. That’s quite amateurish. But then with this diagnosis, that enables the consulted emergency doctor to draw conclusions“ (Müller, 527-537).
As cases often evade the sphere of medical determination and foresight and therefore organisational standardisation, the formulated wishes and beliefs of the patient together with the diagnosis provide a basis on which the emergency doctor can decide. The problem of vagueness which is contested as a weakness of patients’ advance directives which should be legally binding, is here a solution that enables decision making with regard to the patient’s priorities. In the every-day practice, emergency plans as organizational tools help to handle ambivalent situations. The handling of advance directives is facilitated as the new law is interpreted to reassign new accountabilities.
NASSEHI Armin, MAYR Katharina & BARTH Niklas (2010), Regulation of end-of-life-decisions. The advance directive and the will of the patient, KNOWandPOL report.