Healthcare and decision-making in dementia
Consent to medical treatment
In the Professional Rules for German Doctors  , the following two paragraphs are relevant to the issue of consent:
In all medical treatment, human dignity must be ensured and the personality, will and rights of the patients, in particular the right of self-determination must be respected.
In order to provide treatment a doctor requires the consent of the patient. In principle consent must be preceded by the necessary explanation in personal discussion.
The issue of consent is dealt with by numerous high level Court decisions which have consequently set precedents. A basic principle is that any treatment carried out on a person against his/her will constitutes bodily injury. For this reason consent is necessary in all cases. If the person undergoing treatment is unable to consent, in certain cases the decision can be taken by a legal representative.
According to §1904 of the Civil Code, the guardian can consent to health examinations, medical treatment or surgery, but must obtain authorisation from the Guardianship Court if there is a reasonable risk that the ward could die as a result of the measure or might suffer from serious and more prolonged damage to health. Nevertheless, if not carrying out the measure immediately would endanger the health of the patient, it can be carried out without prior authorisation.
Whether a person is capable of consent is not based on legal criteria but rather on whether a person can understand the consequences of an intervention or treatment for his/her body, profession and private life (Laufs, 1993  ). It is not always possible to determine whether a person has this capacity.
Appointment of a health care proxy
A person who has capacity can appoint a health care proxy in an advance directive.
Consent in case of emergency
In an emergency situation, a doctor must decide on the basis of the presumed will of the patient. In order to determine what this might be, he/she should ask relatives and then respect this will. Even if the presumed will of the patient seems unreasonable (e.g. declining a blood transfusion on religious grounds), it must still be respected (Winterstein 6 ). If it is not an emergency but the patient is unable to consent, the doctor should contact the Guardianship Court in order to appoint a guardian, rather than rely on relatives to make the decision.
Consent to research and clinical trials
The issue of protecting research subjects involved in pharmaceutical trials is addressed in a special paragraph in the Medicines Act. The following restrictions apply according to this law (Leenen et al., 1993):
- anybody participating in such research must have given informed consent
- anybody who has been involuntarily committed cannot participate
- only therapeutic research is possible in the case of incompetent people.
The restriction regarding therapeutic research is important for practically all areas of research in Germany. In fact, the main reason why Germany did not sign the Convention on Human Rights and Biomedicine (Council of Europe, 1997) was that it contains a clause which allows in certain circumstances for non-therapeutic research to be carried out on people lacking the capacity to consent, i.e. research which does not have the potential to produce results of direct benefit to the health of the person concerned.
Advance directives/living wills
The legal status of advance directives in Germany
Since 1.9.2009 advance directives have been legally recognised. The new law is integrated into Book 4 of the Civil Code, §§ 1901 a + b (Family Law, Section 3, Heading 2, Legal Guardianship). The new law recognises that advance directives reflect a citizen’s right to self-determination and are linked to the issue of consent to treatment. Therefore, it is possible for people to refuse or limit specific treatments in advance of their incapacity by means of advance directives.
An advance directive may in certain circumstances be considered as binding e.g. if there is no indication of a change of will related to the specific situation and if the instruction is based on sufficient medical information for the medical treatment proposed. In such cases, a decision that is clearly in favour of withdrawing treatment and is clearly the manifest desire of the patient must be complied with (Council of Europe, 2003).
Conditions surrounding the writing, validity and registering of an advance directive
An advance directive can only be written by an adult who has capacity and is not subject to external pressure. For example, writing an advance directive cannot be made a condition for concluding a contract. The advance directive must be in written form. It is assumed that a person has capacity but confirmation of this by a notary may be helpful. The advance directive should refer to specific treatment or situations and cannot include a request for something that is illegal e.g. assisted suicide. Advice from a doctor is advisable but not necessary. There is no set procedure for registering advance directives and they are not limited to a set period of time.
What an advance directive can cover
An advance directive can cover medical investigations, treatment and/or medical interventions.
Obligation to comply with instructions contained in an advance directive
If a person has a guardian, the guardian has to check that the previously expressed wishes relate to the current situation and if so, to ensure that those wishes are respected. The doctor and the guardian have to discuss the wishes contained in the advance directive in order to come to a decision about treatment.
People who are close to the patient and other trusted persons should be heard provided that this would not result in considerable delay.
It is often difficult for doctors to determine whether instructions/wishes expressed in an advance directive correspond to the current situation. For some, it is also unclear whether failure to initiate or end life-supporting treatment/measures is permitted or, on the contrary, fulfils the criteria for the criminal offence of “murder at the request of the victim” (Mathy and Godschalk, in Alzheimer Europe, 2006). The new law does not seem to offer any clarity on this issue.
Amending, renewing and cancelling advance directives
An advance directive can be withdrawn at any time. It is not stated that a person has to have full legal capacity to do this.
Previously expressed wishes in the absence of valid advance directive
Paragraph 1901a does, however, outline the obligation of guardians to take into account previously wishes in cases where the person lacking capacity did not make an advance directive or made one but it does not apply to the current situation. In doing so, guardians must base their appraisal of the person’s wishes on concrete evidence such as wishes which were previously expressed either in writing or orally, ethical or religious convictions and known personal values. This must be done irrespective of the stage or type of illness that the person has.
Access to information/diagnosis
The right to be informed
The obligation to provide information to patients is based on the need to justify the reason for the treatment and to inform the patient of any possible risks, consequences or side effects. According to the highest judicial authorities, information must be "by and large" provided. This means that the kind of information to be supplied depends on each individual and his/her particular medical case (Leenen et al., 1993).
Access to medical files
Under §242 of the Civil Code, patients have a right to access their medical files and do not need to justify the request. If, however, information has been provided by third parties, this access may be restricted.
As mentioned earlier, the doctor is obliged according to §8 of the Professional Rules for German Doctors to provide the patient with information in order to enable the latter to give informed consent. In §10 it is stated that the doctor must grant access to the patient's medical files. However, those parts that contain the doctor's subjective impressions or perceptions are excluded from this. A fee may be charged for the provision of copies of these records. It is not stated whether such access can be granted to third parties.
The right to designate another person to be informed on one’s behalf
If a health care proxy has been designated in an advance directive, this person would also be entitled to receive information on behalf of the person.
Confidentiality/disclosure of information to other people
§9 of the Professional Rules for German Doctors obliges doctors to maintain confidentiality in respect of any information that is entrusted to him/her in his/her capacity as a doctor. This obligation exists even after the death of the patient.
The disclosure of personal information to third parties is prohibited by §823 of the Civil Code which governs the protection of personal rights. The issue of privacy is also addressed in the Penal Code. Paragraph 203 states that it is a punishable offence for anyone to reveal without authorisation a fact that another person told in confidence due to the former's professional capacity. This applies to doctors, dentists, veterinary surgeons, pharmacists, members of a state controlled and recognised medical profession and professional state recognised psychologists. It also applies to assistants of the latter acting on a professional basis and those working for them in preparation for the profession.
End-of-life care and issues
The following instructions on "aid to the dying" can be found in §16 of the Professional Rules for German Doctors:
"A doctor – giving priority to the wishes of the patient – may refrain from life-prolonging measures and restrict him/herself to the alleviation of pain only if the postponement of the inevitable death of the dying person would merely mean unreasonable prolongation of suffering. A doctor must not actively shorten the life of the dying person. He/she must not place his own interest or the interest or third parties above the wellbeing of the patient."
The above paragraph which addresses the issue of both passive and active euthanasia does not refer to incapacitated people or to previously expressed wishes. It is therefore unclear what the doctor's obligation would be in the case of an incapacitated person.
The issue of assisted suicide and active euthanasia is also addressed in the Penal Code. A person who deliberately incites another person to commit an illegal act is guilty of "complicity before the act" according to paragraph 26 of the Penal Code. If the person voluntarily helps another to commit an illegal act, he/she is considered as an accomplice according to paragraph 27. However, neither of these laws is applicable in the case of assisted suicide due to the fact that suicide is not considered a punishable offence. Nevertheless, there are certain conditions. The person who commits suicide must be have acted according to the principle of "Tatherrschaft" which means that he/she must have been able to control his/her actions, have been capable of acting in a responsible manner and have acted freely without coercion.
Non-assistance to a person in danger
On the other hand, paragraph 323c of the Penal Code which deals with failure to provide assistance, states that it is an offence not to provide assistance to a person in case of accident, common danger or urgency. This is particularly relevant for doctors whose duty it would be to provide assistance and try to reanimate a person who had committed suicide as soon as the latter became unconscious.
Murder at the request of the victim
Euthanasia is illegal in that it could be classed as either murder, manslaughter or murder at the request of the victim – all of which are liable to entail a prison sentence. In the case of euthanasia, murder at the request of the victim (Tötung auf Verlangen) is the charge frequently brought against the perpetrator of the act. This act (paragraph 216 of the Penal Code) states:
"Whoever causes the death of another person after having been expressly and sincerely asked to do so by this other person, is liable to a prison sentence of 6 months to five years.
The attempt is also punishable."
Council of Europe (2003), Survey on Member States’ laws and practice relevant to euthanasia: Replies to the questionnaire to Member States relating to euthanasia, Steering Committee on Bioethics (CDBI)
Laufs, A., Atztrecht. 5. Aufl. (1993), Rz 14,144, 163, 164, 167, 168, 179, 185, 198, 204, 210, 241-266. In Demenzen: Frühzeitig erkennen, aktiv behandeln, Betroffenen und Angehörige effektiv unterstützen, edited by Wächtler, C. (1997), Georg Thieme Verlag
Mathy and Godschalk (information provided for the publication: Alzheimer Europe (2006), Alzheimer Europe Report: The use of advance directives by people with dementia , Alzheimer Europe
 The Professional Rules for German Doctors quoted in this report are part of the model version which was decided upon at the 100 th German Medical Parliament in Eisenach in 1997. They take on legal validity when adopted at the council meetings of the State Chamber of the Medical Council and approved by the supervisory authorities. They are legally binding for doctors who are members of the chamber in their respective "Land". Membership of such a chamber is obligatory and there are only marginal differences between the model rules and the actual rules adopted by the chamber in each Land.
 In "Demenzen: Frühzeitig erkennen, aktiv behandeln, Betroffenen und Angehörige effektiv unterstützen, Thieme Verlag"
Last Updated: mercredi 27 avril 2011