Advance Decisions
Last update: August 2022
Contact: NN
Modern medical science now permits successful treatment of many diseases and injuries which in the past would certainly have caused the death of the patient concerned. On the one hand, this has given hope and new opportunities to many people, but on the other hand it can bring about previously unknown states of dependency.
In principle, every person must decide for himself or herself whether medical measures are to be implemented or, as the case may be, continued. However, situations can arise through accident, serious illness or the loss of cognitive abilities with age in which a person is no longer able to give expression to his or her own will. In such cases it devolves upon medical staff and next-of-kin to determine the presumed will of the patient. In such cases a declaration in the form of an advance decision can be of help.
An advance decision (also called living will or health care directive; ‘Patientenverfügung’ in German) is generally understood to represent a statement of the will of a person made while that person is in a position to take decisions and for the purpose of providing for a situation in which he or she is no longer able either to give consent to medical measures, nor to refuse them. An advance decision may refer to the refrainment from or the limitation of certain medical interventions, as well as to their implementation.
The purpose of an advance decision is to uphold the right to self-determination of a patient when he or she loses the capacity to give his or her consent. It is addressed towards the attending physician and/or a legal representative.
In Germany, the first form for making an advance decision declaration was issued in 1978. In the ensuing years, comparable forms were drafted by a variety of organisations (self-help groups, senior citizens’ associations, hospice organisations, pharmaceutical companies, churches etc.). Although advance decisions have been gaining more and more acceptance since the end of the nineteen-nineties, only as late as September 2009 did a law defining their legal status come into force.
Advance decisions must be differentiated from powers of attorney (‘Vorsorgevollmacht’) and directives in respect of guardianship (‘Betreuungsverfügung’). The conferral of power of attorney to a trusted person provides that person with the authority to make decisions in respect of medical intervention and other personal matters. Even close relatives (e.g. spouses or children) require such authority in order to be able to make decisions for a patient in his or her stead. Putting directives in respect of guardianship into writing provides a way of making concrete recommendations as to who should be appointed guardian and provide care and how this should be managed in case guardianship is deemed necessary by a guardianship court (‘Vormundschaftsgericht’).
Germany
As early as the end of the nineteen-nineties, demands for a legal framework for advance decisions began to be voiced with increasing urgency. In the intervening years various recommendations, expertises and draft bills were published by a number of institutions, all of which have been instrumental in paving the path of progress towards a German law on advance decisions.
The process lasted until 2009, culminating in the third act amending German guardianship legislation (´Drittes Gesetz zur Änderung des Betreuungsrechts`), which was passed on 18 June 2009 and ratified by the Federal Council on 10 July 2009, coming into force on 1 September 2009. The core passages in this law, which is also referred to as the ‘advance decision law’ (´Patientenverfügungsgesetz`), constitute the paragraphs 1901a, 1901b and 1904 of the German Civil Code (GCC).
Paragraph 1901a, Section 1, Sentence 1 of the GCC describes the advance decision as the provision of consent to or the prohibition of “specific tests of [a patient’s] state of health, treatment or medical interventions not yet directly immanent at the time of determination”. Paragraph 1901a of the GCC lays down that an advance decision made by an adult who is capable of giving consent must be set down in writing (Paragraph 1901a, Section 1, Sentence 1), but can at any time be revoked without the need to abide by any specific form (Paragraph 1901a, Section 1, Sentence 3). The capacity to consent is legally defined as the respective patient’s capacity to generally understand the character, meaning and consequences of the treatment. The moment at which a person reaches the age of consent is defined by § 2 BGB, according to which it is at reaching the age of 18. Prior to the commencement of the new regulation, minors capable of consent were also able to write an advance decision.
However, an advance decision by adults is only binding in cases where the wishes and conceptions laid down in it by the patient correspond to the current living and treatment conditions (Paragraph 1901a, Section 1, Sentence 1). This must be ascertained by an appointed guardian.
If an advance decision has been laid down in accordance with the legal requirements and its contents correspond with the current living and treatment conditions, then the guardian must ensure that the patient’s will is respected. Otherwise the patient’s presumed will is to be determined and taken into account (Paragraph 1901, Section 2 of the GCC).
According to Paragraph 1901a, Section 3 of the GCC, the Sections 1 and 2 apply irrespective of the type of disorder from which the cared-for person is suffering, and also irrespective of its stage of development. This stipulation negates a so-called limitation of scope, such as a restriction of application to fatal illnesses or irreversible loss of consciousness, for instance. Thus an advance decision can, in principle, include the refusal of all medical interventions, i.e. also those which may be expected to bring about a cure or at least a prolongation of the patient’s life. Problematical situations can arise when an advance decision stipulates that life-prolonging measures should not be undertaken if the person concerned falls victim to dementia, that condition does indeed arise and yet the afflicted patient shows signs of enjoying life.
Whereas Paragraph 1901a deals with the formal and material criteria to be met by binding advance decisions, Paragraph 1901b clarifies the question as to who shall be called upon to examine these criteria and, as necessary, to provide for the effective implementation of an advance decision. When an adult “cannot in whole or in part take care of his affairs” (Paragraph 1896, Section 1 of the GCC), then a representative is to be appointed who shall take decisions in his or her stead in dealings with third parties. If the person affected has not taken precautionary measures for this eventuality, then the guardianship court shall appoint a legal representative to cover those circumstances for which guardianship is necessary (Paragraph 1896, Section 2, Sentence 1).
In accordance with Paragraph 1901a, Section 2, Sentence 2, the ‘presumed will’ of the patient is to be determined on the basis of concrete indications, whereby previous verbal or written statements, ethical or religious convictions and other personal value judgements known to have been held by the person to be cared for are to be taken into account (Paragraph 1901a, Section 2, Sentence 3).
The task of determining which medical measures are indicated in view of the prognosis for the patient’s illness and his or her overall condition devolves upon the medical practitioner (Paragraph 1901b, Section 1, Sentence 1). After this, the physician and the guardian must seek agreement as to which measures should actually be taken for the benefit of the patient (Paragraph 1901b, Section 1, Sentence 2). Should it prove impossible for the physician and the guardian/attorney to reach agreement in respect of the interpretation of an advance decision, an assessment must be made by the guardianship court (Paragraph 1904 Section 4 of the GCC).
Court approval is also required in cases where there is a credible risk that the patient may die as a result of the planned measure or sustain major and long-lasting harm (Paragraph 1904 Section 1, Sentence 1 of the GCC). Without approval of the guardianship court such an intervention may only be implemented when a delay may be expected to increase the risks involved (Paragraph 1904 Section 1, Sentence 2).
The implications of the advance decision law discussed above were reaffirmed, strengthened and specified by a ruling (2 StR 454/09) of the Federal Court of Justice in June 2010. The jurisprudential discussion in Germany about the legal status of advance decisions was thereby ended for the time being. Furthermore, the Hague Convention on the International Protection of Adults (Haager Übereinkommen zum internationalen Schutz Erwachsener, ESÜ) now facilitates a German health care proxy for German citizens to use in other European countries.
A momentous revision took place in 2016. On the occasion of a lawsuit, the Federal Court of Justice (Bundesgerichtshof, BGH) clarified the legal situation applicable up to that time, with far-reaching consequences for a large proportion of existing advance directives. In its judgment of July 6th, 2016, the BGH states that advance directives must be formulated with sufficient precision with regard to possible forms of treatment in order to be legally effective. A general formulation, such as the one that "life-extending measures" should no longer be applied under certain circumstances, does not meet the necessary precision requirement. As it leaves uncertain, for example, whether or not continued artificial feeding by means of a stomach tube is covered by such measures.
The reason for the judgment was the legal dispute between various relatives of a patient, each of whom was given a healthcare proxy. The advance directive of the patient contained the aforementioned general wording which was interpreted in a contrary manner by the relatives. As a result of the judgment, a large number of affected persons are now requested to specify their existing advance directives accordingly or to review them for the need for clarification. According to the executive board of the German Foundation for Patient Protection, Eugen Brysch, 30 percent of Germans have issued such an order.
In a new judgment on the occasion of a similar legal dispute on February 8, 2017, however, the Federal Court of Justice again relativised its requirement for precision to a certain extent and determined that in the case of an advance directive that does not contain a sufficiently specific designation of the unwanted medical measures, the required precision may also result as an implication of a specific treatment situation or disease situation specified in the document (in the litigation in question this was the irreversible loss of consciousness). According to the judgment, in disputes it is the task of the competent legal instances to examine whether an advance directive can be interpreted in terms of such implications.
The legal situation in selected European countries
In some European countries like Sweden or Poland the binding force of advance decisions is still not regulated by law as yet. Most other European countries, however, have installed statutes of private precaution to differing degrees in recent years. The respective national regulations aim at ensuring the furthest possible extent of the right of self-determination. Nonetheless, the notion of what is to be understood as self-determination and how it is to be safeguarded differs from state to state. There are hence considerable differences in form, acceptable content and binding effects of such statutes of private precaution. In Austria, for instance, strict requirements have to be met in laying down an advance decision in order for it to be legally binding. If it does not entirely meet those standards (form, medical and legal consultation, precise definition of the renounced medical treatments, not older than five years), it is only “considerable” (“beachtlich”) – thus not binding for the physician, but only to be adequately considered in his judgment.
Likewise, the preconditions for setting down an advance decision vary significantly. France for example offers three different forms which range from filling out a standardized set form to legal advice and minuting to a notarially certified document and which constitute different degrees of legal bindingness respectively. Switzerland and the Netherlands on the other hand have regulations similar to Germany’s; they provide no gradual system and treat private documents basically the same as notarial ones.
Whether decisions on future medical measures or on euthanasia are admissible depends on the legal regulations of the treatment agreement between patient and physician and on the legal classification of euthanasia. Regulations in Belgium reach the furthest in comparison to other European countries. Patients may bindingly determine which methods of treatment they prefer and name situations in which they desire aid in dying. The legal situation in Italy in turn is entirely different: Euthanasia of any kind and the patient’s opportunity to decide on the termination of hydration and food supply are forbidden by law.
From a comparative law perspective, it is noteworthy that in most European legal systems there is a legal right of representation for spouses or registered life partners or close family members. As one of the last countries without such a legal right of representation, the German Bundesrat passed the emergency right of representation for spouses and civil partners in May 2021, which will come into force on 1 January 2023.
In recent years, the ethical debate on advance decisions has been very closely linked with the political debate, with the focus being on questions of patient autonomy and self-determination as well as the obligations devolving on medical staff and next-of-kin. To some extent the discussions being held on advance decisions overlap with those encountered in the debate on euthanasia.
Patient autonomy and medical care
Advance decisions can represent a difficult challenge not only for next-of-kin, but doctors as well. The physician's task is to save or preserve life. Until well into the 20th century, the relationship between the patient and the doctor was largely determined by the notion that the latter's fund of specialist knowledge rendered him better able to judge what is best for the patient than the patient himself or herself. This paternalistic view has drastically changed in recent decades. Today, the patient's right to self-determination forms the basis for medical decisions; in other words, the patient's will takes precedence over what medical staff may consider to be in his or her interests.
Thus the fact that a given intervention appears reasonable from the medical point of view is not in itself sufficient to justify its implementation. This is always dependent on the patient's consent. The advance decision can be seen as an expression or necessary consequence of this line of thought. Its purpose is to uphold patient autonomy and self-determination even in situations where he or she is unable to make decisions or communicate. According to German law, if a physician carries out treatment which the patient has expressly excluded, this amounts to the infliction of bodily harm. From this point of view, the obligation of the physician to preserve life can be regarded as ceasing to be applicable where the patient no longer wishes his or her life to be prolonged.
It is undisputed that the right to self-determination continues to exist beyond a loss of capacity to give consent – otherwise giving consent to general anaesthesia (in which state the patient is also unable to give consent) would be invalid. Therefore a person's wishes must be taken into account, even when that person is currently unable to give consent.
Difficulties involved in the determination of the patient's will
Since the introduction of the advance decision law, the theoretically binding nature of advance decisions is practically undisputed. In practice, however, situations arise from time to time in which, despite the existence of an advance decision, it remains unclear as to whether the patient is or would be in favour of life-sustaining measures.
For instance, an advance decision may be formulated in such a way that the patient's will cannot be determined unequivocally. Expressions such as 'no life-sustaining measures' when the patient is experiencing 'gravest physical suffering' or when 'there is no hope of improvement of an intolerable situation' are very vague and open to interpretation. In such cases – and also in those where there is no advance decision available – the patient's presumed will must be determined with great care. This, however, is precisely the point which often proves very difficult. As a response to this predicament, patients are presented with forms, with the aim of obtaining a detailed picture of their wishes. In this context, criticism is also levelled at the strictly binding nature of advance decisions on the basis that the future situation cannot be predicted with the clarity which is needed in order to be able to specify exact instructions for treatment. Especially in cases of coma vigilit is difficult for the physician to respond to the individual wishes of the affected patients, since the course of coma vigil is not always possible to predict.
Concern is also frequently expressed over the fact that a person's values and attitudes can change in the course of his or her life, so the will expressed in an advance decision may not necessarily correspond with the wishes of the person now no longer able to give consent. This is supported by medical experience confirming that conditions of ill health or limitations may be evaluated by a healthy person or during the initial phases of a disease in quite a different way than is the case when the disease has reached an advanced stage. This view is countered with the argument that drafting such an advance decision necessarily involves concentrated thought about desired treatment, so that the resulting advance decision certainly does provide an accurate reflection of the patient's interests and values.
Autonomy and Capacity to consent
In the case of patients basically capable of consenting who are currently unconscious and do not display any expressions of behaviour, it is obvious that patient autonomy can only be respected by reference to earlier acts of free volition. Situations in which patients are capable of communicating verbally or nonverbally, yet are at the same time evidently in a state of incapacity to consent, are more difficult. With regard to the question of life-prolonging measures it may happen that a patient’s current statements contradict his or her earlier volition. In medical practice there are case reports of dementia patients acting life-affirmingly to such an extent that they can hardly be presumed to still consent to their advance decision of renouncing such measures. In this context, a subject of controversy arises regarding patient autonomy in psychiatry where involuntary treatment occurs. Should in such cases the currently perceived will or the previously expressed will be given the greatest weight? Whereas some see in the patient's behaviour the will to continue living and give this precedence over a previously made declaration, others are in favour of strict adherence to the will expressed in the advance decision. A question which is to be raised in this context concerns the extent to which dementia and other neuronal diseases are to be associated with changes in the patient's personality. Occasionally this factor is seen as being of such overriding weight that the person concerned must be regarded as being no longer identical with the one who drafted the advance decision. In this sense strict adherence to decisions taken earlier is considered to be questionable, as these reflect only the will of the 'previous' person. Others in turn maintain that it is less problematical to take account of the will expressed in an advance decision by the person concerned, who is at least linked to the 'present' person through their common biography, than of the will of third parties, which are always and necessarily influenced by their own interests.
The discussion surrounding the limitation of scope
Another central point of discussion is provided by the limitation of scope, i.e. the question as to whether an advance decision should be restricted in its scope of application to certain types of illness or certain stages of development of a disease. The German legislators decided against such a limitation. This represented the result of a long period of debate during which arguments in favour of a limitation of scope were brought forward time and again. For instance, in its interim report on advance decisions, the 'Study Commission on Law and Ethics in Modern Medicine' (Enquete-Kommission 'Ethik und Recht der modernen Medizin') took a favourable stance in respect of such limitations. In the opinion expressed in the report, the validity of the will declared in an advance decision should only be acknowledged when the basis disorder from which the patient is suffering is irreversible and according to current medical experience will lead to his or her death. This recommendation attracted a great deal of criticism and its opponents argued that, amongst other things, such a decision would represent a value judgement concerning living life with an illness, as it would have the effect of treating life during a period of terminal illness as being less worthy of protection than is the case during other phases.