A series of organizational activities, court decisions and media events from the early 1990s until 2003 have induced political efforts toward the legal ratification of the binding force of the advance directive involving a wide range of societal actors. In the process of debating, political consulting etc., different political actors like governmental institutions, representatives of the parliament, lobby groups etc. work on policies concerning the regulation of self-determination at the end of life. Though self-determination functions as an unquestioned value in the discourse about advance directives, political lines of conflict emerge concerning regulatory questions. Questions concerning the range of wishes that can be directed in advance, formal requests for validity and the new regulation of accountabilities are debated extensively until in 2009 after a long political antecedent a decision is taken in parliament and a law regarding the binding force of advance directives is passed. The underlying study focused on the interrelation of knowledge and policy in a broader sense, how knowledge is used and transformed in the course of political, organisational acting and how this affects processes of regulation. Often the use and the transformation of knowledge affects the knowledge base of the involved actors. Concepts change and knowledge is handled differently. What we can observe in the course of policy is a shift from external criteria, which can be guaranteed by the traditional authorities, to internal criteria of the obscure will of the patient. In contrast to former cases of legislation, external moral concepts, for example the value of living, are not subject to the new law passed in 2009. Here the legislation marks an obvious shift from external to internal criteria for end-of-life-decisions. In the discourse about the regulation and the practice of implementing advance directives, a dying subject as an accountable decision taker is constructed, whose will cannot be ignored in what follows. The patients’ will is moving from the margins to the mainstream which makes the concept of the “presumed will” increasingly important.
Medical Advancement and Professional Uncertainty
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). Although the use of intensive care is regarded as helpful and beneficial in most cases, this change of medical practice has created new forms of living and dying which come into conflict with our conception of personal integrity. The continuity of the vegetative functions can sometimes be ensured over years under conditions of unconsciousness: “Because the possibilities of keeping someone alive under difficult conditions, that is, under medically difficult conditions, has grown unceasingly. The fact that in many homes people remain comatose for years, without one being able to gain access to their consciousness, that is a situation that one didn’t know before. But which is immensely stressful” (Jäger, 204-208).
A changing medical practice is subject to growing criticism and this produces professional uncertainties and reflection: “But I think that 15, 20 years ago, you can’t ascertain it down to the day, an intensive discussion on the question, does medicine sometimes not only prolong life unnecessarily, must medicine always do everything it can. All the way to the sometimes absurd prospect, that some people have declined intensive medicine per se and said I don’t want all of that. All of that began somewhere around that time and with it also the altercation was brought about then on us” (Voss, 123-129). 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. However the application of advance directives in the local praxis is regarded as deficient. On the one hand doctors are accused of not respecting the patient’s will expressed in such directives: “If you go to a hospital of a certain denomination or a doctor with certain corresponding ethical conceptions, it can seem to me as a patient that he says, your advance directive doesn’t interest me” (Prager, 59-62). “(…) the doctors pressure the family or advisors to agree to the use of a feeding tube. With the usual, ‘You certainly don’t want to let your mother starve, we have to do this here etc. or else tend to this where you leave your mother’” (Hahne, 441-445).
As a matter of fact the rapid advancement of medical possibilities and the doctors’ paternalistic behavior seems to make intervention necessary. Certainly, both has been enhanced by the fact, that a medical logic was able to free itself from former strong bindings like for example religious beliefs. Now professional acting shall be limited by the patient’s will as the questions produced by the medical changes produces situations where usual professional answers can not convince any more.
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 self-determination shifts more and more towards the opinion that people should decide for themselves and can be considered responsible for their choices.
From protection of life to patient’s autonomy
The idea of patient’s autonomy appears to be the essential driver of the growing importance of advance directives, 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. 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: "In the past they said, according to the criminal code the will of the patient allows certain life-sustaining measures to be desisted, but does not release the doctor from the statutory duty to preserve the life. Then reflect upon these new medical possibilities of which I just spoke. And they said that we need a limiting measure. And this limiting measure is not exhaustive of all medical technical possibilities, and should not lie in the will of the doctor, we’ll put it evenly, in the arbitrariness of the respective treating doctor. But rather the patient should, according to the old medical-legal policy that the patient determines the extent of medicinal measures, the measure should be subordinated to the will of the patient And so they say patient’s autonomy at the end of life – which then limits and partly cancels out this legal responsibility to preserve an expiring life at any cost” (Volkers, 156-166). “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, 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” (Schmitz, 412-422). What we can observe in the course of the public action is a shift from external criteria, which can be guaranteed by the classical authorities to internal criteria of the obscure volition of the patient. Neither doctors nor judges can decide about the limits of life still worth living, but rather only the patient concerned. In contrast to former judicial cases, external moral concepts are not subject to the new law passed in 2009. Here the legislation marks an obvious shift from external to internal criteria for end-of-life-decisions. "And the other, as I see it, is really an improvement, I even already said that, that now the presumed will and its basis of the decision-making at any rate is arranged in the beginning and therefore, I hope so in any case, a refusal of any objective moral concepts, as they were still represented in the Kempten decision of the Federal Supreme Court, is made clear” (Schmitz, 216-220).
Active dying vs. passive suffering
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 fact this question must be rephrased: what does dying mean to you? “So we ask now, what does that mean - that’s - have you ever seen our questionnaire, the first question, what does dying mean to you? So we invite people to ask themselves this question. It’s a far-off event that is associated with fear, that’s like redemption or something” (Hahne, 388-392). In the scope of all problems is the dying subject itself. A subject, that had to be invented first. How did this mode of subjectivity gain its plausibility? As a consequence of the achievements of modern medicine, death and the process of dying have been temporally decoupled. By applying a PEG-probe e.g. the event of death can be a distant presence within the long process of dying. Death itself has therefore been temporalised. The process of dying is also temporalised as relatively long before dying really happens; people anticipate their own dying in reflecting their priorities concerning possible scenarios of dying. “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.
Dying as a part of life
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. “And what I see behind the advance directive is the approach that you deal with your own life and especially with the final stage of your life actively und therefore ask yourself what do I actually want in this period of therapy anyway?” (Voss, 173-176). This decision not only has to be decided but the whole decision making process has to be staged. Dying is supposed to be actively dealt with. The individualized dying must fit into life within a temporal dimension; it must be framed biographically, being communicable in its narrative form. Dying has rather to become a part of life. A confession is demanded from the patient: he has to be capable of confronting himself with reflecting his dying process.
The advance directive is understood to bridge a lack of information concerning the patient’s will. But in contrast to traditional forms, now people have to start reflecting what makes wishes and priorities emerge. “If the dialogue was ideal, we neither needed any advance directive nor regulating laws. The dialogue cannot be ideal though, because doctors who don’t know their patients at all are employed in emergency cases. So in the traditional alpine village there is a doctor who knows all inhabitants of this village and these inhabitants will never leave the village. Here we don’t need any advance directive, if the people are on speaking terms. But the situation is different. The living will is a communication tool for people you could not communicate with before. So if you live in an alpine village that you will never ever leave, where you have got a doctor who is most certainly present if there is any problem you don’t need any advance directive at all, because everyone knows what to do. This is just a crutch to restore the village degree of information somehow or at least to approach it. That means you need – and I regard the health care proxy as more important than the advance directive and the consultation also more important than the advance directive, because thereby the people start contemplating, what wishes and priorities they have anyway. This is a small contribution to a dialogue culture regarding end of life” (Mehring, 313-328).
Furthermore the dying subject literally has to prove its efforts of contemplation. What ultimately results in an autonomous will of the patient, which is simultaneously first constituted by this practice of reflecting on himself. The dying subject has to want its volition actively. To deal with your disease is always oscillating between individual freedom of choice and social imposition. On the one hand new degrees of freedom are unleashed, on the other hand the subtle force of individual reasoning can be read off the social fact that even the refusal of dealing with one’s own death is now put under the obligation to give reasons. “Within the dialogue it’s totally important, both in the dialogue with us as well as with the relatives, with the doctors. And that’s not because the isolated, what’s the word, the bourgeois subject or individual somehow commits its volition to paper or something like that. And I say this and therefore it’s bound to happen so” (Hahne, 259-262).
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 so-called 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.
Medical feasibilities or ethical standards are no longer plausible answers to insecurities produced by end-of-life scenarios. The shift from extern criteria to inner reflection and volition of the patient produces the dying subject as decider. But what does this mean especially to the traditional powerful medical profession? 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)
It is not a legal limit of range for self-determination that shall protect people against harming themselves by their decisions fixed in advance directives, but the consultation by professionals. The German National Ethics Council (2005) emphasizes both, the right of self-determination and the importance of the support from a doctor: “After all, in accordance with both current law and generally accepted ethical principles, patients should be able to exercise their right of self-determination in this situation as in others, but for this purpose they as a rule need information and support from a doctor” (p.22). In the end, medical, legal or other forms of consultation are not fixed as a mandatory presumption for the validity of advance directives, as financial considerations prevailed in the process of consultation and political decision making. Nonetheless an informed process of opinion-forming seems to be a vital precondition for the practical plausibility and validity of the patient’s will. A practitioner and medical functionary expresses it as follows: "And if the advance directive also shows that the person himself has, has thought about it, that he has studied in depth, that he has formed an opinion. And not simply a multiple choice proceeding and a signature and done. And the deeper I’m convinced that the patient really knew what he did, the more untouchable is it for me” (Voss, 92-97). "When it’s obvious, that it was made after consultation of a physician, family doctor or a competent nurse or care giver, then this increases the plausibility of the expressed wish” (Voss, 191-193).
Furthermore, medical knowledge is an inevitable precondition for the formulation of a practically and legally applicable advance directive as a legal consultant puts it: “If I just say, and a lot of people think that, I want, if it is going badly or worse for me, or if I am critically ill, then I don’t want any life extension. Then that is legally unusable. No doctor can start with that. One has to say, in situation A, B, C, D I don’t want any life extension. And to describe this situation, that’s an advanced skill. It becomes medical. You can’t just state the disease- what do I know- but you have to list the symptoms of this disease as precisely as possible. So if I am no longer in the position to comprehend perceptions, then I don’t want it anymore” (Jarmer, 119-126). 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: "Thank god, our law is like that, that it leaves to the patient what can be regulated and has no - I call it – ethical break, that says you mustn’t do this or that. For example according to the law somebody could say, when I’m in a coma, then I want no life extension – without any constraint. Although the doctors may say, in about three weeks he’s out of the coma and relatively little disabled. Whoever makes such a decision, when it is not thought out, can eventually harm himself. And the conservative position wanted to eliminate this self-harming by all means. And that’s essentially not possible as regards legal and legislator concerns. But you have to leave it to the patient. The duty of consultation, of my consultation and the medical consultation will be to say, well, you can’t do that, that you decide now about things that are absolutely unpredictable. (…) You have to try to say to people, if you are healthy you can regulate only some aspects. Not before – and that’s the second step – then this directive is actually quite good – when you’re severely ill, then you know what illness is like, than you are experienced. And then you can also decide about, how you want to live or die. (…) Thus there’s a difference. But to try to regulate that by law, that I would suspect to be very wrong. In that respect I am glad that we have that current law. But you have to make the difference clear. A healthy person, who can regulate only few things. An ill person, that can regulate everything – of course together with the doctor” (Jarmer, 137-177).
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. But medical expertise is of growing importance concerning the application of advance directives and the consultation that is to help people to formulate one. It is not by legal regulation that the patients’ welfare is guaranteed but rather informed self-determination, where the patient’s will is formed and delimited by professional consultation. While the increasing institutionalization of self-determination in the form of advance directives seems to trigger a kind of juridification of the medical practice, medical knowledge advances and becomes more clearly visible as explicitly medical. By coupling medical treatment to legal questions by the construction of the patient’s will, medical knowledge in terms of 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 and marks a process which could be called “Re-Medicalisation”
At first glance, 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). “And there the indication plays a big role. The doctor can say from the beginning that extension of life is not indicated at all, we already had an example earlier [I: Ja]. If a dementia patient cannot be fed anymore, he refuses it, he can’t swallow anything more, then many say – there are studies in America which confirm this – no more indication. And when nothing more is indicated, then it no longer depends on the will. Because the patient cannot wish for a treatment which isn’t indicated. (...) But the concepts of indication, that the doctors have used until now, were possibly a little bit different. They often incorporated the will. What comes out of it at the end then is that through the law now these concepts are out-dated, because the law clearly distinguishes between medical indication and the consequential determination of the will. Those are two different things” (Jarmer, 499-516).
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). "And if something is offered, that which is offered has to be lege artis. I can’t offer something that is already barred from a medical perspective. Every doctor has to be clear about that. And that’s why we solve more and more cases without the advance directive, but advance directive is only a buzzword anyway, I would see it in a broader sense through the patient’s will” (Johnson, 477-481). 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).
The Individualisation of Dying and the New Professionalism
It should be shown, how the view on end-of-life-decisions changed and how during the policy of the institutionalisation of advance directives the patient’s will more and more substitutes extern criteria or principles concerning normative questions of dying. This happens in accordance to what Ulrich Beck described as the process of individualisation.
Modernisation creates a subject, which is to a large extent released from traditional ties. In our case the classical authorities cannot give rules any more, how dying should be handled. Instead a dying subject evolves which has to describe itself as an accountable decider and who has to reflect in its decisions normative criteria.
But this does not mean that professionals become less important, as Beck suspects, rather their role is changing from unquestioned authorities that absorb questions of life conduct, to professional experts. Professional knowledge becomes an important resource for the legal regulation of advance directives as well as for questions of the application of such directives. As consultants for patient’s that want to prepare an advance directive, doctors evolve a now kind of professionalism.
Even the medical knowledge base is affected by the normative questions concerning end-of life-decisions. In a process which could be called “Re-Medicalisation”, medical standards change and gain new weight in the practice of handling dying.
NASSEHI Armin, MAYR Katharina & BARTH Niklas (2010), Regulation of end-of-life-decisions. The advance directive and the will of the patient, KNOWandPOL report.