Healthcare and decision-making in dementia
Consent to medical treatment
Pursuant to Article 8 §1 of the Law of 22 August 2002 on Patients’ Rights, consent is required for medical acts that intrude on a person’s physical integrity (Leenen et al., 1993). Such consent can be implied except in the case of major interventions. At the request of the patient and with the agreement of the physician, or alternatively, at the request of the physician and with the agreement of the patient, the consent is recorded in writing and put in the patient’s medical file.
Consent may be given on behalf of a person who is suffering from a mental disorder or who is unable to express his/her will either by a formally designated legal representative or by a family member in his/her role as the patient's natural protector.
The issue of consent is also covered in the Code of Medical Ethics  . Article 30 of the Code states that if a patient is incapable of giving his/her consent and it is impossible or inappropriate to obtain the consent of his/her legal representative, the doctor must proceed with treatment as dictated by his/her conscience.
By virtue of Article 13 § 2 of the Law of 22 August 2002 on Patients’ Rights, the patient can continue to exercise his/her rights for as long as he/she is capable of understanding.
Article 14 § 1 of the Law of the same law states that a patient can, while still capable of understanding, appoint a “mandatary” to exercise rights under that law on the patient’s behalf in the event of subsequent inability of the patient to exercise such rights. For this purpose, a special mandate must be drawn up in writing, dated and signed by both the mandatary and the patient. In the absence of such a mandatary, the patients’ rights are exercised by, in order of priority, the cohabiting spouse, the cohabiting legal partner, the cohabiting partner in fact, an adult son or daughter, a parent, or an adult brother or sister. For simplicity, the mandatary or other person determined by Article 14 § 1 will be referred to in the rest of this chapter as “the Article 14 Representative”. It should be emphasised that this is not the same as an “provisional administrator” who can be appointed by the courts to manage a person’s property pursuant to Article 488 bis of the Belgian Civil Code, or the “legal representative” appointed by the courts to manage all the affairs of a person who has been declared “legally incapable” pursuant to Article 489 of the Belgian Civil Code.
Consent in case of emergency
In cases of emergency where there is uncertainty as to the existence or not of wishes expressed by the patient or the Article 14 Representative, Article 8 § 5 of the Law of 22 August 2002 on Patients’ Rights provides that the physician must intervene in the best interests of the patient’s health. Such emergency situation must be noted in the patient’s personal file kept by the physician.
The right to refuse treatment or withdraw consent
By virtue of Article 8 § 4 of the Law of 22 August 2002 on Patients’ Rights, the patient has the right to refuse a particular treatment or to withdraw his prior consent at any time. The refusal or withdrawal of consent is recorded in writing at the request of either the patient or the physician, and put in the patient’s medical file. However, the fact that the patient has refused a particular treatment does not affect his/her rights under Article 5 of the same law, notably the right to quality services corresponding to his/her needs, and in full respect for his/her human dignity and autonomy.
Consent to non-conventional treatment
The Law of 22 August 2002 on Patients’ Rights applies to all services provided by a professional physician with the objective of (i) promoting, determining, conserving, restoring or improving the state of health of a patient, and/or (ii) accompanying the patient at the end of life. The physician can be either a medical practitioner qualified to provide conventional treatment in accordance with the law of 10 November 1967 on the Medical Professions, or a practitioner of non-conventional medicine within the meaning of the Law of 29 April 1999 on non-conventional practice in the medical, pharmacy, physiotherapy, nursing and paramedical professions. Thus the provisions described above in relation to consent to medical treatment are applicable equally to non-conventional treatment covered by the Law of 29 April 1999.
Consent to the donation of organs and/or human tissue
The donation of organs and human tissue is regulated by the Law of 13 June 1986 on the Transplant of Human Organs. This Law makes a distinction between the taking away of organs and human tissue (i) when the donor is still living and (ii) after the donor has died.
In the first situation, fully informed consent must be obtained either from the donor himself/herself or, if he or she is incapable of expressing consent by reason of his/her mental state, from any legally appointed mandatary or the Article 14 Representative (Article 6 § 2).
In the case of a deceased person, organs and human tissue may be taken, without prior consent, from the body of any deceased person registered in the population register, or registered for at least six months in the foreigners’ register (Article 10 § 1). However, persons can refuse the removal of organs or human tissue after their death by formally notifying such refusal to their local authorities (Article 10 § 3). Persons unable to express their refusal by reason of their mental state are represented by their legal representative, provisional administrator or closest relation for this purpose (Article 10 § 2).
In the case of deceased persons not registered in either the population register of the foreigners’ register, the removal of organs or tissue is not permitted unless the deceased person has expressed his/her prior consent, duly proven (Article 10 § 1).
Consent to research and participation in clinical trials
The conduct of clinical trials and experiments on human beings is regulated by the Law of 7 May 2004 on Experiments on Human Beings, and also falls within the scope of Article 91 of the Code of Medical Ethics.
A person cannot be subjected to scientific observation or used purely for research purposes. A person cannot be subjected to procedures which could cause the slightest inconvenience and which are not therapeutically beneficial without his/her fully informed consent in writing, or in the case of a person unable to give his/her consent, without the fully informed consent in writing of his/her guardian. In the case of incurable illness it does not have to be demonstrated that the research will be therapeutically beneficial.
Article 6 of the Law of 7 May 2004 on Experiments on Human Beings requires that consent must also be obtained in writing by the physician for a patient’s participation in a clinical trial. For persons suffering from mental disorder or who are unable to express their consent, Article 8 provides, in effect, that the Article 14 Representative can give the consent. At any time, the patient or the Article 14 Representative can decide to quit the clinical trial.
Any biomedical research or clinical trial must be approved by the medical ethics committee of the National Council of the Order of Physicians (Articles 11 ff.).
Advance directives and health care proxies
The legal status of advance directives
As a general rule, Belgian law does not use the term “advance directive” or “advance declaration” except in the specific context of the Law on Euthanasia of 28 May 2002. There are many other laws, however, which require prior consent for certain acts, notably the Law on Patient’s Rights, the Law on Transplant of Human Organs, and the Law on Experiments on Human Beings. The term “Advance Directive” is used colloquially to describe a document in which a person seeks to deal with some of all of such consents (or refusal of consent) in advance, and especially to deal in advance with the case where the person becomes incapable of expressing his/her wishes. In addition, an “Advance Directive” can also appoint another person as the first person’s Article 14 Representative for the purpose of consenting to treatment in the future, and/or as a personal confidant.
Thus the legal status of such an advance directive has to be examined disposition by disposition. The validity of each disposition will depend on the relevant law governing that disposition (consent to treatment, consent to participation in experiments, appointment of a representative, etc.)
Conditions surrounding the writing, validity and registration of an advance directive
For the reasons explained in section 184.108.40.206 above, the conditions of validity of an advance directive have to be examined separately for each disposition, having regard for the law governing that disposition, namely:
- consent to or refusal of certain types of treatment, including non-conventional treatment – see Sections 220.127.116.11, 18.104.22.168 and 22.214.171.124 above;
- designation of the Article 14 Representative to act on the patient’s behalf if the patient should become incapable of acting him/herself – see Section 126.96.36.199 above;
- consent to donation of organs or tissue while still alive – see Section 188.8.131.52 above;
- consent to participation in clinical trials - see Section 184.108.40.206 above;
- formulation of an advance declaration concerning euthanasia in the event that the patient becomes unconscious – see Section 220.127.116.11 below.
What an advance directive can cover
For the reasons explained in section 18.104.22.168, an advance directive can cover anything for which the law requires prior consent or appointment, namely:
- consent to or refusal of certain types of treatment, including non-conventional treatment – see Sections 22.214.171.124, 126.96.36.199 and 188.8.131.52 above;
- designation of an Article 14 Representative to act on the patient’s if the patient should become incapable of acting him/herself – see Section 184.108.40.206 above;
- consent to donation of organs or tissue while still alive – see Section 220.127.116.11 above;
- consent to participation in clinical trials - see Section 18.104.22.168 above;
- formulation of an advance declaration concerning euthanasia in the event that the patient becomes unconscious – see section 22.214.171.124 below.
Obligation to comply with instructions contained in an advance directive
For the reasons explained in section 126.96.36.199 above, the question whether the physician is obliged to comply with instructions contained in an advance directive has to be examined by reference to the type of instruction under consideration.
The underlying principle of Article 8 § 4 of the Law of 22 August 2002 on Patients’ Rights is that the wishes of the patient must be respected. Thus if the patient’s written instructions refuse a certain treatment the physician must comply. However, the fact that the patient may have refused a particular treatment does not affect his/her rights under Article 5 of the same law, namely a right to quality services corresponding to his/her needs, and in full respect for his/her human dignity and autonomy.
It follows also from this underlying principle that the scope of a patient’s consent, if any, to donation of organs must not be exceeded, as also the scope of his/her consent, if any, to take part in clinical trials.
It should be noted that a physician is under no legal obligation to comply with a patient’s advance declaration concerning euthanasia. The Law on Euthanasia of 28 May 2002 merely provides the physician with protection against criminal prosecution if he/she carries out an act of euthanasia within the strict conditions laid down by the law. Thus the question whether the physician complies with the patient’s advance declaration in this respect is solely a matter of professional ethics for the physician.
Amending, renewing and cancelling advance directives
A consent or authorisation discussed above can be revoked at any time in writing signed by the patient. The amendment or renewal of a consent or appointment would have to be accomplished respecting the same formalities as for the original consent or appointment. As far as concerns an advance declaration concerning euthanasia, the Law on Euthanasia of 28 May 2002 simply says that the declaration can be withdrawn at any time, but does not prescribe any formalities for such withdrawal. In practice, if a patient were to do anything that cast doubt on his/her advance declaration concerning euthanasia, the physician would not act.
Access to information/diagnosis
The right to be informed
Pursuant to Articles 7 and 8 of the Law of 22 August 2002 on Patients’ Rights, patients have the right to be informed about their medical situation and any treatment by the physician. There are also a few provisions in the Code of Medical Ethics regarding access to information. Article 29, for example, states that it is the doctor's duty to inform the patient of the reasons for diagnostic or therapeutic interventions which he/she proposes. It does not state that the patient must be informed of the diagnosis, but Article 33 states:
"The physician informs the patient in due course on the diagnosis and prognosis, including serious and fatal prognosis. For this purpose the physician must take into account the patient’s wishes. In any case, the physician assures the patient a continued treatment and appropriate follow-up. At the same time, the physician must inform the patient’s entourage accordingly unless the patient objects.."
Access to medical files
Article 9 § 1 of the Law of 22 August 2002 on Patients’ Rights provides that a patient has the right to require his physician to keep a file with due care, up to date an in a safe place. The patient may provide his/her physician with documents to be kept in the medical file. Moreover, there are many provisions of the various laws in the medical field which require a physician to place a record of certain information in a patient’s medical file. Articles 38 and 39 of the Code of Medical Ethics also require that a physician should in principle keep a medical file on each patient and is responsible for determining who has access to all or part of the information kept in it.
Article 9 § 2 of the Law of 22 August 2002 on Patients’ Rights also provides that a patient has the right to consult his medical file. Access should be granted in principle as quickly as possible, an in any case no later than 15 days of the patient’s request. The patient’s right of access does not extend to personal annotations made by the physician nor to information concerning third parties.
The right to designate another person to be informed on one’s behalf
Article 7 § 2 of the Law of 22 August 2002 on Patients’ Rights provides that a patient may request in writing that information about his/her state of health and its likely evolution be communicated to a personal confidant. Such written request as well as the identity of the personal confidant must be put in the patient’s medical file.
Article 9 § 2 of the Law of 22 August 2002 on Patients’ Rights provides that the patient can consult his/her medical records in the physician’s possession. In exercise of the rights to obtain information and consult his/her medical records, pursuant to the Law on Patients’ Rights, the patient may be assisted by a personal confidant designated by him/her. If this personal confidant is a physician, the latter can also consult the personal annotations made by the physician treating the patient.
Articles 7 § 2 and 9 § 2 deal specifically with the designation of a personal confidant to assist the patient in exercise of the right to be informed and the right to access the medical file. This presupposes that the patient’s mental state does not prevent him/her from exercising such rights. If the patient’s mental state does prevent him/her from exercising such rights, it would fall to the Article 14 Representative to exercise those and other rights on the patient’s behalf.
The doctor’s right to withhold information
A physician may refuse to provide information to the patient about his/her medical situation and diagnosis, if informing him/her about the medical situation and/or diagnosis could have a negative effect on his/her health. However, as provided by Article 7 § 4 of the Law on Patients’ Rights, such refusal is only allowed if the physician has requested the opinion on this issue from another physician.
When the medical file contains information the communication of which might gravely prejudice the patient’s health (see Section 188.8.131.52 above), the patient must exercise his/her right of consultation through a personal confidant who is also a physician (see Section 184.108.40.206 above).
The patient’s right to refuse information
Article 7 § 3 of the Law of 22 August 2002 on Patients’ Rights provides that a patient may request in writing not to be informed of his/her state of health and likely evolution. The physician must comply with such request unless so to do would cause grave harm to the patient or to a third person, in which case the physician must consult another physician on this subject and also any personal confidant designated by the patient.
Confidentiality/disclosure of information to other people
Doctors are bound to secrecy by the provisions of chapter V of the Code of Medical Ethics. This obligation extends to everything that the doctor sees, learns of, notices or discovers through the exercise of his/her duties. Nevertheless, Article 458 of the Penal Code, which also establishes professional secrecy, provides exceptions to this obligation, such as the obligation to provide information to the courts (Leenen et al., 1993).
Article 10 § 1 of the Law of 22 August 2002 on Patients’ Rights provides that the patient is entitled to the protection of privacy (“private life”) on the occasion of the intervention of a physician, notably in matters relating to his/her state of health. The patient has the right to “intimity”. Except with the patient’s agreement, only persons whose presence is justified can attend during care, examinations and treatment provided by a physician.
The principle of confidentiality does not prevent a patient from appointing a personal confidant for the purposes of exercising the patient’s right to information or the right to consult his/her medical file (see Section 220.127.116.11 above).
End-of-life care and issues
Article 2 of the Law of 14 June 2002 on Palliative Care lays down the general principle that every patient must be able to benefit from palliative care as he/she approaches the end of life. Palliative care is defined “... all care or treatment given to a patient afflicted with an illness likely to lead to death once the illness ceases to respond to curative therapy”. Article 2 also states that the first objective of palliative care is to provide the patient and those close to him/her with the best quality of life possible and maximum autonomy.
Article 7 of the same law provides that every patient has the right to information concerning his/her state of health and the possibilities for palliative care. The physician treating the patient must communicate this information in appropriate terms having regard for the patient’s situation, his/her wishes and his/her faculties of understanding. Article 95 of the Code of Medical Ethics complements this by providing that a physician must inform the patient at the appropriate time of the impending end of his/her life, and of the assistance that can be provided. In reply to any request on the subject, the physician must explain to the patient the various steps that he/she may take, such as the appointment of a representative, the refusal of certain forms of treatment, and the preparation of an advance directive. In particular, the physician must inform the patient of his/her right to receive palliative care. If the physician decides upon a course of treatment or care, he/she must explain this to the patient and give the patient adequate time to obtain a second opinion. Further, the physician and the patient are should discuss and agree on the persons who must be informed of the patient’s situation, and the extent of such information. Article 7 of the Law of 14 June 2002 on Palliative Care also provides that the patient must give fully informed consent for medical examination and treatment. This law does not make any provision for representation of the patient in case of inability to mark his/her consent due to his/her mental situation.
Article 96 of the Code of Medical Ethics states that when a person is in the last stages of his/her life, the doctor must provide him/her with all the moral and medical support possible in order to alleviate psychological and physical suffering and to preserve his/her dignity.
Special leave for carers in paid employment
In addition, Article 100 bis of the Law of 22 January 1985 with regard to social provisions provides for special leave for employees who care for terminally ill persons. The term of such special leave amounts to one month and can be extended by the same amount. In order to benefit from this special leave it is not necessary that the person being cared for be a family member. When someone wants to use this special leave, his employer must be notified and a special certificate issued by a physician must be filed.
A distinction is sometimes made between passive euthanasia, also known in Belgium as “orthothanasie”, and active euthanasia.
For example, the giving of palliative care is sometimes considered as “passive euthanasia” if it results in shortening a patient’s life. The providing of palliative care is not considered to constitute a criminal offence, provided the patient is informed of the treatment and of its consequences, and marks his/her consent in writing. The intention is not to cause death, but to care for the patient.
On the other hand, intentionally depriving a person of food or care to such an extent as to compromise his/her health when, by reason of his/her physical or mental state that person is unable to provide for him/herself is a criminal offence under Article 425 of the Penal Code, whether or not the person dies as a result. Such action would also be quite unethical and could not fall within the “safe harbour” provisions of the Law on Euthanasia of 28 May 2002.
From a legal point of view, the term “euthanasia” can only be used as defined by Article 2 of the Law on Euthanasia of 28 May 2002 - “an act carried out by a third party which intentionally terminates the life of someone at the latter’s request”. Such an act would normally constitute the offence of voluntary homicide or homicide with premeditation (“assassinat”) – see sections 18.104.22.168 and 22.214.171.124 below – unless it was carried out within the strict conditions of the Law on Euthanasia of 28 May 2002. The innovation introduced by the Law on Euthanasia of 28 May 2002 was to remove the risk of prosecution and provide a “safe harbour” in the case where a physician carries out an act of euthanasia on a patient after respecting all the procedures and conditions laid down by this Law.
The Law of 28 May 2002 provides for two procedures, the first where the physician acts on the basis of a written request formulated directly by the patient, and the second where the physician acts on the basis of an advance directive.
Under the first procedure, the patient must formulate the request for euthanasia in a written document, signed and dated. If the patient is not in a condition to do this, the request can be made by an adult person chosen by the patient, but who must have no interest in the patient’s death. The request is put in the patient’s medical file. The patient may withdraw his/her request at any time, in which case it is removed from his/her medical file.
The physician must ensure that:
- “the patient has attained the age of majority or is an emancipated minor, and is legally competent and conscious at the moment of making the request;
- the request is voluntary, well-considered and repeated, and is not the results of any external pressure;
- the patient is in a medically futile condition of constant and unbearable physical or mental suffering that can not be alleviated, resulting from a serious and incurable disorder caused by illness or accident.”
In addition the physician must:
- Inform the patient of his/her state of health and life expectancy, discuss with him/her possible workable therapies as well as the possibilities offered by palliative care. The physician must reach, with the patient, the firm conviction that there is no other reasonable solution in the circumstances, and that the patient’s request is entirely voluntary.
- Satisfy him/herself of the persistence of the patient’s physical or psychological suffering and of the patient’s continuing desire, over a reasonable period, for euthanasia to be carried out.
- Consult another independent physician as to the serious and incurable nature of the patient’s affliction.
- Consult with the members of any team of carers in regular contact with the patient.
- If the patient so wishes, consult with close relations designated by the patient.
- Check that the patient has had the opportunity to discuss his/her request with anyone he/she wished to meet.
Where the physician considers that death will not intervene naturally in a short time, he/she must consult with another physician specialised in the pathology concerned and discuss the results of such consultation with the patient. In any event, the physician must allow at least one month between the patient’s written request and the carrying out of the act of euthanasia.
Under the second procedure, the physician carries out the act of euthanasia on the basis of an advance declaration. For this purpose the Law of 28 May 2002 provides that an adult (or emancipated minor) person may draw up an advance declaration in writing expressing his/her desire that his/her physician carry out an act of euthanasia where the physician finds that:
- the patient suffers from a serious and incurable disorder, caused by illness or accident;
- the patient is no longer conscious;
- this condition is irreversible given the current state of medical science”.
In the case of advance declaration, the patient must have made or confirmed the request no more than least five years before losing the ability to express his/her wishes and it must have been added to the patient’s medical file. The document must be written, dated and signed in the presence of two adult witnesses, and any appointed health care representative (or proxy). At least one of the witnesses must have no material interest in the person’s death. A form of advance declaration is annexed to a Royal Decree of 2 April 2003.
Article 4 § 2 of the Law on Euthanasia of 28 May 2002 provides a “safe harbour” for a physician who carries out an act of euthanasia on a patient pursuant to an advance declaration where the patient is suffering from an accidental of pathological affliction which is serious and incurable, the patient is unconscious, the situation is irreversible in the light of current science and the physician respects all the conditions laid down by Article 4 § 2. These conditions are as follows:
- The physician has consulted another physician on the irreversibility of the patient’s medical situation and the results of such consultation are communicated to the patient’s personal confidant, if any. The second physician must be independent of both the patient and the first physician, and must be competent in the pathology concerned.
- If there is a medical team that was in regular contact with the patient, the physician must consult with this team or its members.
- If the advance declaration designates a personal confidant, the physician must consult with this person and also with any persons close to the patient designated by the personal confidant.
A person who knowingly and consciously assists another person in committing suicide could commit one or more of the following offences, depending on the circumstances, and the degree of knowledge or premeditation involved. These offences are:
- homicide with the intention of causing death – Article 393 of the Penal Code;
- premeditated homicide or “assassinat” – Article 394 of the Penal Code;
- failure to come to the assistance of a person in danger – Article 422 bis of the Penal Code (see also Section 126.96.36.199 below).
There would a valid defence, however, if the assistance to commit suicide were provided by a physician as part of intentionally administering an act of euthanasia carried out in accordance with the strict terms of the Law on Euthanasia of 28 May 2002.
Non-assistance to a person in danger
Pursuant to Article 422 bis of the Penal Code it is an offence to fail to come to the assistance, or to obtain assistance for a person in serious danger, when such danger is known directly or has been communicated by others who request such assistance.
The offence is constituted by the failure to provide assistance, whether of not the person dies as a result.
It cannot be excluded that the offence under Article 422 bis might technically be involved in certain acts of euthanasia carried out by a physician, in which case the “safe harbour” of the Law on Euthanasia of 28 May 2002 would be available, provided all the conditions laid down by that law were respected.
Murder and murder at the request of the victim
Murder, i.e. voluntary homicide, is a criminal offence under Article 393 of the Penal Code, and homicide with premeditation is a more serious offence, characterised as “assassinat” under Article 394 of the Penal Code. It is no defence to say that the victim requested to be killed.
On the other hand, there is a valid defence if the taking of life is carried out by a physician as an act of euthanasia in accordance with the strict terms of the Law on Euthanasia of 28 May 2002.
Conversely, an act of euthanasia which is carried out at the request of the victim without complying with the provisions of the Law on Euthanasia of 28 May 2002 can be considered as voluntary homicide or homicide with premeditation (assassinat) according to Articles 393 and 394 of the Penal Code. 
Delpérée N (1999), Psychiatrie et vieillissement: du droit civil au droit social, Revue belge de sécurité sociale
Commission consultative nationale d'éthique pour les sciences de la vie et de la santé (1998), Les avis de la C.N.E. L'aide au suicide et l'euthanasie (Avis 1/98), Luxembourg
Rentchnick P (2007), Evolution du concept "euthanasie" au cours de ces cinquante dernières années
Code de déontologie médicale élaboré par le conseil national de l'ordre des médecins (Code of Medical Ethics)
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 Code of Medical Ethics (Code de déontologie médicale) - Updated in 2007- Established by the National Council of the Order of Physicians
 Les Avis de la C.N.E. – L'aide au suicide et l'euthanasie, Avis 1/98 de la Commission Consultative Nationale d'Ethique pour les sciences de la Vie et de la Santé (Ministère de l'éducation nationale et de la formation professionnelle – Luxembourg)
Last Updated: mercredi 27 avril 2011