Advance Decisions
Last update: April 2024
Contact: Elena Krämer-Nagelschmidt
Medical progress has made it possible to successfully treat many illnesses and injuries that were previously fatal. Although this is associated with hope and opportunities for many people, it can also lead to new states of helplessness.
The question of whether medical measures should be used or continued must be decided by each person on a case-by-case basis. However, as a result of an accident, a serious illness or a decline in cognitive abilities in old age, a person may no longer be able to express their own will. In such cases, it is the task of medical professionals and relatives to determine the presumed wishes of the person to be treated. A patient's living will written by the person to be treated can be helpful in such situations.
The purpose of such a directive is to protect the right to self-determination of the person who is no longer able to give consent. The directive is addressed to the medical staff providing treatment or the legal representative. The term "patient's will", which is sometimes used, is misleading, as wills are drawn up for arrangements after death, whereas advance directives contain arrangements for the time before death, hence the term 'living will'.
A living will is generally understood to be a declaration of intent made by an adult with decision-making capacity in the event that they are no longer able to consent to or refuse certain medical measures. The subject of a patients will can be the omission or limitation of certain medical actions as well as the performance of certain medical actions. In Germany, the age of majority is set at 18; minors are not able to formulate such a legally binding directive. Nevertheless, it is legitimate across national borders for spouses or adult relatives or family members to act as their representatives. Germany has caught up with most other European countries in this regard with a law passed in 2023, which allows legal representation for spouses and civil partners.
The living will must be distinguished from the health care proxy and the care decree. A health care proxy authorises a trusted person to make decisions about medical interventions or other personal matters. Even close relatives (e.g. spouses or children) need such a power of attorney to be able to make decisions on behalf of the person to be treated. A care directive offers the opportunity to make written proposals regarding the person providing care and the way in which care is to be provided in the event that the guardianship court sets up care.
The first patient decree form was published in Germany in 1978. In the following years, comparable forms were developed by various organisations (such as self-help groups, senior citizens' associations, hospice associations, pharmaceutical companies, churches, etc.). Although patients' wills have been increasingly recognised since the end of the 1990s, a law on the legal anchoring of patients' advance directives only came into force in Germany in September 2009.
It should also be noted that since 2016 it has been necessary to formulate the patient's advance directive in a sufficiently differentiated manner. Following a precedent-setting case before the Federal Court of Justice, it has so far been necessary to refrain from generalising statements such as an overall rejection of life-prolonging measures in favour of precise statements of consent and rejection of certain medical practices. In the case of a dispute between two parties of carers who disagreed as to whether a feeding tube falls under life-prolonging measures, the Federal Court of Justice ruled that the patient's advance directive did not meet the necessary precision requirements to be able to conclude which measures were classified as life-prolonging from the patient's perspective.
It therefore makes sense for private individuals to review their advance directive with regard to precision and revise it from this perspective.
The dilemma situation for carers and doctors
If there is no advance directive, doctors and carers are faced with the situation of having to anticipate the wishes of the person in their care. Here, they can rely in particular on written or verbal previous statements as well as on statements made by the carer about the patient. The aim is to fulfil the patient's wishes as truthfully as possible. Fairness of resources and prognosis must also be considered here, but from an ethical perspective, the wishes of the person being cared for should carry somewhat more weight.
Professionals face a particular dilemma if the patient's advance directive is written by a person with dementia who wrote their advance directive in a healthy, sane state and now has conflicting emotions. If we assume a person with dementia who, in a healthy state, did not want any life-sustaining measures in the event of such an illness, but who shows positive emotions and enjoyment of life in the long term during the illness, it is difficult to weigh up the pros and cons of passive or even active euthanasia, as is currently possible in Belgium.
In this case, the wishes and ideas of the sick person set out in the advance directive must correspond to the current life and treatment situation. If the actual circumstances and the situation of the person with the illness are sufficiently different from the original wishes, a reassessment in consultation with the carer may be possible and indicated. If, on the other hand, the situation is as anticipated by the patient in a healthy state, it can be assumed that the person made their arrangements legitimately and that these wishes should be taken into account in full and to the best of their ability.
The ethical debate on advance directives, which has been very closely linked to the political debate in recent years, focuses on questions relating to the moral and legal right of the person undergoing treatment to self-determination as well as questions about the duty of care of medical professionals and relatives. In some cases, the discussions about patients' advance directives overlap with those about euthanasia.
Patient autonomy and medical care
Advance directives pose difficult decisions not only for relatives, but also for healthcare professionals. The task of the medical professional is to save or preserve life. Until well into the 20th century, the relationship between the person to be treated and the healthcare professional was characterised by the paternalistic idea that the healthcare professional was better placed than the person concerned to decide what was good for the person to be treated based on their specialist knowledge. This paternalistic image has changed considerably in recent decades. The right to self-determination of the person to be treated now forms the basis of medical decisions, i.e. the patient's wishes take precedence over what the healthcare professional or carer considers to be in the best interests of the person to be treated.
If a measure makes sense from a medical point of view, this does not imply that the healthcare professional is authorised to carry out the measure. This always requires the consent of the person to be treated. The patient decree can be seen as an expression or consequence of this development - it is intended to safeguard patient autonomy even in situations in which the person to be treated is unable to make decisions or communicate. If a healthcare professional carries out treatment even though the person to be treated has expressly refused it, this is considered an offence under German law. From this perspective, the doctor's obligation to preserve life ends when the person to be treated no longer wishes it.
It is undisputed that the right to self-determination of the person to be treated continues to apply beyond the loss of capacity to consent - otherwise, for example, consent to anaesthesia (in which the anaesthetised person is not capable of consenting) would also be invalid. A person's wishes must therefore be taken into account, even if they are currently no longer capable of giving consent.
Difficulties involved in the determination of the patient's will
The theoretical binding nature of advance directives has hardly been questioned, especially since the Patient Decree Act came into force. In practice, however, there are often situations in which it is unclear whether the person to be treated wants life-sustaining measures to be carried out despite having a living will.
For example, it may be that a patient's advance directive has been formulated in such a way that the wishes of the person to be treated cannot be clearly determined. Formulations such as "no life-prolonging measures" in the case of "severe physical suffering" or in the event that there is "no hope of improvement in an intolerable condition" are very vague and open to interpretation. In such cases - and also in cases where there is no advance directive - the presumed wishes of the person to be treated must be carefully determined; however, this is often very difficult. This problem is addressed with forms in which the patient's wishes are asked in great detail. Another argument against the strict binding nature of patients' advance directives in this context is that it is not possible to predict the future situation with sufficient certainty to be able to determine precise treatment instructions. In the case of coma vigil, in particular, it is difficult for medical professionals to respond to the individual wishes of the person to be treated, as it is not always possible to make a clear prognosis about the course of treatment.
It is also often feared that a person's values and attitudes can change over the course of their life and that the will declared in a patient's advance directive therefore does not necessarily correspond to the wishes of the person who is no longer capable of giving consent. This assumption is supported by the experience of medical professionals that illness-related conditions or restrictions are assessed very differently in healthy days or at the beginning of an illness than in advanced illness. However, this is countered by the fact that the preparation of such an advance directive requires intensive consideration of treatment wishes, so that it can be assumed that the advance directive reflects the interests and values of the person to be treated.
Autonomy and Capacity to consent
In the case of people who are incapable of consenting to treatment, such as those who are unconscious and show no current behavioural expression, it is clear that patient autonomy can only be respected by recourse to previous expressions of will. More difficult are situations in which the persons to be treated are able to express themselves verbally or non-verbally, but are still in the stage of proven incapacity to consent. For example, with regard to the question of life-prolonging measures, it can happen that current statements appear to contradict the previously declared will of the person to be treated. In medical practice, for example, there are reports of cases in which dementia patients have behaved so cheerfully that it cannot actually be assumed that they would still agree to the rejection of such measures declared in a patient's advance directive. In this context, the question of patient autonomy in psychiatry is also the subject of controversial debate, as coercive treatment does occur there. Should the actual or the declared will be complied with in such situations? While some interpret the behaviour of the person to be treated as the will to live and give this will priority over an advance directive, others are in favour of strict compliance with the will declared in a patient's advance directive. The question in this context is to what extent dementia and other neuronal diseases are associated with a change in personality. It is occasionally claimed that the disease-related personality change is so severe that one must speak of a different person. In this sense, the binding pursuit of pre-determined decisions is questionable, as it only expresses the will of the former person. Others argue that it is less questionable to take into account the will of the person themselves, with whom there is at least a biographical continuity, than the will of third parties, who are always influenced by their own interests.
The discussion surrounding the limitation of scope
Another central point of discussion is the so-called limitation of scope, or the question of whether a patient's advance directive should be restricted to certain types or stages of illness. German legislation has decided against such a restriction. This decision is the result of many years of debate, in which arguments in favour of a scope restriction were repeatedly put forward. The Enquete Commission "Ethics and Law in Modern Medicine", for example, had spoken out in favour of such a restriction in its interim report on living wills. In their opinion, the will declared in a living will should only be able to claim validity if the underlying condition of the person to be treated is irreversible and would lead to death despite medical treatment according to medical knowledge. Many objections were raised against this proposal, including that such a decision would represent a value judgement on life with illness, as life with illness in a terminal phase would be considered less worthy of protection compared to other phases of life.