Healthcare and decision-making in dementia
Consent to medical treatment
The WGBO  , which came into force on 1 April 1995, deals with the issue of consent. Article 450 states that procedures carried out for the purpose of implementing a treatment contract shall require the consent of the patient. If the patient is over sixteen or cannot be considered capable of reasonably assessing his/her own interests with regard to treatment, the care provider and the patient's guardian , mentor, spouse, parent, child or brother/sister may base their decisions on an advance directive (please see the section on advance directives). Kees Blankman (1997) provides the following explanation of how consent is handled in case of an incapacitated adult:
“The introduction of the WGBO illustrates the conviction in the Netherlands that, in general, medical treatment takes place within an agreement, the rights and duties of which are governed by law. If a patient requiring treatment is incapacitated and cannot give his informed consent, an impasse exists, a vacuum that can be filled in several ways. According to Dutch law, the medical professional has no broad statutory authority to act in the best interests of an incapacitated adult. He is entitled and obliged to determine whether or not the adult can decide upon this matter, e.g. entering into an agreement, change of medication, important decisions to be made within the agreement.
If the medical professional considers the patient to be incapacitated, the law requires him to obtain the consent of a representative except in emergency cases and non-radical decisions. Above all, he must act "as a responsible medical professional." This criterion means, among other things, that he must act according to the standards of his profession. These standards will no doubt refer to the best interests of the patient. Following this rule might even result in ignoring the will of the representative.
There are several means of judicial intervention. A representative can start a lawsuit against the professional on the basis of failure to honour the agreement, e.g. not acting as a responsible professional.
Acting as a responsible professional may, on the other hand, imply that the medical professional furthers the application of a measure, e.g. if there is no family member fit to represent the adult or in case there is a dispute within the family. Judicial intervention cannot be requested for a single court order.”
Substitute decision making is possible in practically all cases, even in the case of sterilisation. However, it is common for the responsible representative to seek a second opinion. Moreover, if the will of the adult is known, substitute decision making becomes practically impossible.
Consent in case of emergency
If the person who is unable to consent shows the slightest resistance to the treatment or procedure it cannot be continued, except in case of emergency or when necessary to prevent severe harm.
The right to refuse treatment
Consent to the donation of organs and/or human tissue
A person must register him/herself as a donor (e.g. via www.wordorgaandonor.nl ). If consent has not been given, the doctor may ask for the consent of the family of the deceased person.
Consent to research and clinical trials
If a person can no longer consent to participation in clinical research, the family may give consent on his/her behalf.
Consent of people who have been involuntarily committed
Under the B.O.P.Z  , a person who has been involuntarily committed to a psychiatric hospital has the right to be involved in decisions relating to his/her treatment. Article 38 states that a treatment plan must be drawn up in consultation with the patient. If this is not possible, the medical superintendent must be informed. If the person responsible for drawing up the treatment plan is of the opinion that the patient is not in a fit state to assess his/her needs in respect of the proposed treatment, s/he must discuss the issue with the patient's legal representative. If the legal representative is not available the following should be consulted in the order in which they are mentioned:
- The person named by the patient for this purpose in writing (a self-appointed representative)
- The patient's spouse or partner
- A parent, child, brother or sister
If consultation on the treatment plan does not lead to agreement, no treatment may be carried out. Even if agreement has been obtained from the patient or those responsible for consultation, the treatment cannot be administered if the patient later objects. Nevertheless, treatment may be administered if absolutely necessary to prevent danger to the patient or others arising from the disturbance of his/her mental faculties.
In this case, the medical superintendent must be informed immediately upon commencement of the treatment and an investigation must be carried out afterwards to determine whether the decision to proceed with treatment was made with due care and whether the treatment was carried out with due care.
Advance directives/living wills
Article 450 of the WGBO  of 1994 contains a paragraph which can be interpreted as referring to advance directives. It is stated that if a patient aged sixteen or over cannot be deemed capable of reasonably assessing his/her interests with regard to care, the care provider shall comply with the apparent opinion of the patient about withholding consent and refusing treatment expressed in writing while s/he was still capable of reasonable assessment.
Conditions surrounding the writing, validity and registering of an advance directive
As stated above, to make a valid advance directive, a person must be aged 16 or over and have the necessary capacity to do so.
What an advance directive can cover
It is not stated what an advance directive can and cannot cover, but it is in principle legally binding if it includes withholding consent for future treatment.
Obligation to comply with instructions contained in an advance directive
This could include a refusal of treatment or withholding consent in certain circumstances or the request not to be resuscitated. Care providers are legally bound by this written statement but they may deviate from it if there are good reasons for so doing. In a fact sheet produced by the Ministry of Health, Welfare and Sport (1995), it is stated that care providers are not obliged to search for such a statement in emergency situations and that in any case, advance directives must be clear and have been made fairly recently. Moreover, advance directives should not be confused with statements requesting euthanasia.
The Termination of Life on Request and Assisted Suicide (Review Procedures) Act of 2002 contains provisions on advance directives relating to euthanasia. Such a directive may be regarded as a request for euthanasia by the patient if s/he becomes unable to express his/her will. Physicians are not required to perform euthanasia but those physicians who are willing to do so must regard an advance directive as an expression of the will of the patient (Council of Europe, 2003). However, Wortmann (2004) has suggested that an advance directive cannot be used to request active voluntary euthanasia in the case of patients with dementia as the request must have been expressed continuously and steadfastly by the patient over a long period of time.
Amending, renewing and cancelling advance directives
Patients may retract or modify an advance directive at any time.
Access to information/diagnosis
The right to be informed
The WGBO  stipulates that the doctor is obliged to provide the patient with information, but also that the patient must furnish the doctor with the information and assistance that s/he may reasonably require in order to implement the treatment contract. The doctor's obligation is linked to the obligation to obtain informed consent. Article 448 states that the care provider must inform the patient clearly and, if necessary, in writing of the proposed examination and treatment, and developments related to the examination, treatment and the state of health of the patient. The Act does not specify how the information should be given, except that it is stated that if the patient is under 12, the information must be provided in a way that s/he understands.
However, in pointing out that ’the care provider should be guided by what s/he feels is reasonable for the patient to know in view of the nature and purpose of the examination or treatment, the likely risk, other possibilities and the state of health of the patient’, there is an implication that the care provider should bear in mind the patient's needs and wishes and adapt the substance and timing of the information in relation to this. The patient for his/her part is obliged to the best of his/her knowledge to provide the care provider with information and assistance which the latter may reasonably require.
Access to medical files
According to the WGBO, the care provider is obliged to keep medical records on the patient. The medical file should contain information relating to the patient's treatment, data concerning the health of the patient, procedures/operations performed and documents containing such information as is necessary for the purpose of providing the patient with the proper standard of care. The file can also contain statements made by the patient in relation to the above. These documents must be kept for 10 years from the date they were produced or for as long as they are necessary for the patient's care.
If the patient would like to consult the medical records, s/he must make a request to do so. The care provider would then be obliged to grant access to the files and provide copies if required, unless this would jeopardise the privacy of a person other than the patient (article 456). The caregiver may charge a reasonable fee for providing copies.
The doctor’s right to withhold information
The care provider can withhold certain information only if s/he considers that it would cause the patient serious harm. This is known as the ’therapeutic exception to the information obligation’. In such a case, the care provider can, nevertheless, give the information to another person. If s/he does decide to withhold information, s/he must first consult another care provider on the matter.
The patient’s right to refuse information
If the patient has expressed a wish not to be informed, information shall not be provided, except where the interest of the patient is outweighed by the harm to him/herself or others which may ensue from withholding it (article 449).
Confidentiality/disclosure of information to other people
Concerning access to medical files, the care provider must ensure that no-one other than the patient has access to such documents unless the patient has given his/her consent. Information or access to and copies of documents shall be provided only insofar as it would not infringe on another person's privacy. This is covered by article 457 of the WGBO.
There are, however, several exceptions in that access can be granted to:
- A person with a right to access based on specific legislation
- Those care providers who are directly involved in the patient's treatment
- A person who acts as a locum for the care provider
- Those whose consent was required in connection with the implementation of a treatment plan (the person acting on the patient's behalf, e.g. a guardian)
- Researchers carrying out statistical or scientific research. The care provider must ensure that the data are supplied in such a form as to ensure that they cannot be traced back to the individual. Furthermore, the research must be in the interests of the public, cannot be conducted without the information in question and the patient must not have explicitly objected to information being provided (although s/he may not have actually consented to it).
The care provider must ensure that procedures carried out as part of the treatment contract are not observed by other people, unless their professional assistance is required or the patient has consented to such observation (article 459). This should ensure that the physical privacy of a patient is respected.
Palliative sedation is the deliberate lowering of the consciousness of the patient in the terminal stage of life. It means that patients, whose life expectation is no more than two weeks, are brought into a deep sleep and don’t receive drinks. This is only for patients for whom there is no longer any possibility of a cure. The goal of palliative sedation is to enlighten unbearable suffering, for example severe pain. Palliative sedation is different from euthanasia because it is not the active termination of life and it is not illegal.
Special leave for carers in paid employment (paid leave)
Employees can take paid time off work to sort out emergency situations such as a death in the family or to care for a sick relative. The leave should be reasonable and in keeping with the emergency situation. However, if a person’s partner (with whom he or she lives) suddenly becomes ill and needs instant care, the first day off can count as emergency leave but subsequent days cannot. They count as a different kind of leave (Ministry of Social Affairs and Employment, 2007). Ten days’ leave can be taken per year to care for a sick child, partner or parent if it is necessary that the employee provides such care. In such cases, the employer must pay at least 70% of the employee’s wage. The employer receives compensation for this (Pijl, 2003). Employees do not have legal right to time off work to care for a dying person but employers may agree to grant such leave. It can be granted to people who are close to the dying person even if the latter is in an institution. The leave consists of at least one third of the employee’s working hours. The leave can be from one to six months but can be extended to a maximum of 18 months. During this time, the employee receives a payment with a maximum of €490.54 a month paid from public funds (Pijl, 2003).
Special leave for carers in paid employment (unpaid leave)
Long-term compassionate leave can be taken by employees who need to take care of a seriously ill child, parent or partner whose life is at serious risk. For a maximum of twelve weeks per year, the employee can take up to half of his/her working hours as compassionate leave. These hours are not paid but the remaining working hours are. They can be spread out over a period of up to 18 weeks subject to agreement with the employer. A request for long-term compassionate leave must be made in writing at least 2 weeks before the requested start of leave. With regard to payment, certain collective labour agreements or other agreements with employers may result in part payment of the hours taken as compassionate leave (Ministry of Social Affairs and Employment, 2007).
The Working Hours (Adjustment) Act 2000 (wet aanpassing arbeidsduur) gives employees the right to increase or decrease their working hours. This right applies to employees in the public and private sector who have been employed by a particular company for at least one year. The request, which can be made once every two years, must be made 4 months in advance and must contain details of the starting date for the change, the magnitude of the adaptation of working time and how the working hours would be divided over the week.
Euthanasia is a criminal offence. However, the articles in the penal code which address taking another person’s life or assisted suicide (please see the following sub-sections) were enacted in the late 19 th century. Since then a policy decision has been made to distinguish euthanasia from murder and assisted suicide and provide for a lesser penalty than that relating to murder. Article 40 of the Penal Code allows for a ’defence of necessity’ due to the particular nature of the doctor's task, namely that s/he has the duty to preserve lives but on the other hand has the duty to reduce suffering to a minimum which leads to a conflict of duties. Consequently, a physician who performs euthanasia or assists with suicide can invoke the defence of necessity. Only doctors can plead this defence as only they have these two duties.
Strictly speaking, neither voluntary euthanasia nor assisted suicide have been legalised or decriminalised in Holland. They remain offences. The defence of necessity is not sufficient in itself. In order to be valid, the doctor must have followed a strict procedure.
Since 1991, there has been an agreement between the Royal Dutch Medical Association and the Dutch Ministry of Justice that gives a doctor protection against prosecution, if in the case of active voluntary euthanasia or assisted suicide, the doctor complies with certain guidelines. The way that the defence of necessity has been interpreted and applied has led to the open practice of euthanasia in Holland. The above-mentioned guidelines are based on criteria established as a result of court decisions which lay down when a doctor can successfully invoke the defence of necessity. The guidelines include the following:
- The patient must make a voluntary request, which should be written down.
- The physician must know the patient well enough to assess whether the request is indeed voluntary and whether it is well considered.
- The request must be persistent and durable.
- The patient's condition must entail unbearable suffering without any hope of recovering. The patient need not be terminally ill to satisfy this requirement.
- The physician must consult a colleague who agrees that the above-mentioned criteria are met.
- The physician must keep a full written record of the case and the decision-making procedure
- The physician performing euthanasia or assisted suicide must not issue a declaration of natural death, but inform the local medical examiner of the circumstances (that it is a physician-assisted suicide).
The notification procedure contains approximately 50 criteria on the basis of which a physician draws up his/her report. The physician reports to the municipal pathologist/coroner, who in turn forwards it with his/her comments to the public prosecutor for assessment.
This assessment takes place on the basis of the statutory norms in the Criminal Code and the way they are interpreted in case law. If the criteria have not been fully met, the doctor will in principle be prosecuted.
Otherwise the public prosecutor will decide not to prosecute the physician as it is likely that the court will recognise the physician's invocation of force majeure.
The decision of the public prosecutor is then put before the committee of procurators-general (chaired by the Minister of Justice), which in individual cases can reverse a public prosecutor's decision not to prosecute (Smook, 1998). Since the case of Chabot (1993/94), if the patient has a psychiatric disorder the doctor must have the patient examined by at least two other doctors, one of whom must be a psychiatrist (Docker, 1996). It is unclear how the process of voluntary euthanasia applies to people with dementia, particularly as it is a lengthy process and the patient may lose the ability to consent as time passes.
Withdrawal or withholding of food and drink
The term starvation is used to describe dying as a consequence of food and drink being withheld when a patient is not asking for it spontaneously (or when a patient refuses all food and drink). The patient actually dies as a result of dehydration, which causes the vital organs to stop functioning. The withholding/withdrawal of food and drink under these circumstances is not illegal.
Assisted suicide is a crime. Article 294 of the Penal Code states that, "Any person who intentionally incites another to commit suicide, assists him/her in the act or provides him/her with the means to commit suicide shall, if suicide follows, be liable to a term of imprisonment not exceeding 3 years or a fourth category fine".
Murder at the request of the victim
According to article 293 of the Penal Code, "Any person who takes another person's life at that person's express and earnest request shall be liable to a term of imprisonment not exceeding 12 years or a fifth category fine".
Blankman, K. (1997), Guardianship Models in the Netherlands and Western Europe, in International Journal of Law and Psychiatry, Vol. 20, No1, pp. 47-57, 1997
Docker, C. (1996), Euthanasia in Holland (Internet article: http://www.euthanasia.org/dutch.html)
Ministry of Health, Welfare and Sport (1995), Factsheet (V-11-E 1995): Medical Treatment Contracts Act,
Ministry of Social Affairs and Employment (2007), Emergency leave and other short absence breaks, http://internationalezaken.szw.nl/index.cfm?fuseaction=dsp_rubriek&rubriek_id=391638&lijstm=0,310_6057,334_13212
Ministry of Social Affairs and Employment (2007), Long-term compassionate leave, http://internationalezaken.szw.nl/index.cfm?fuseaction=dsp_rubriek&rubriek_id=391639&lijstm=0,310_6057,334_13213
Pijl, M. (2003), Developments in the support of carers – In Finland, England and the Netherlands, 1998-2002, National Board of Health and Welfare (Socialstyrelsen): http://www.caregiving.org/intcaregiving/documents/2003-123-5.pdf
Smook A (1998), Voluntary euthanasia in the Netherlands and Pharmacy, (extract of speech made at the 12 th Int. Conference of the World Federation of the Right to Die Societies)
Wortmann M (2004), Information provided in the course of a public discussion following a presentation at Alzheimer Europe’s annual conference held in Prague in May 2004
 This is the Dutch abbreviation for the Act of 17 November 1994 amending the Civil Code and other legislation in connection with the incorporation of provisions concerning the contract to provide medical treatment.
 The Act of 29 October 1992 (and subsequent amendments) which replaced the Act of 27 April 1884 on the State Supervision of the Mentally Ill
 The Act of 17 November 1994 amending the Civil Code and other legislation in connection with the incorporation of provisions concerning the contract to provide medical treatment (came into force on 1 April 1995)
 The Act of 17 November 1994 amending the Civil Code and other legislation in connection with the incorporation of provisions concerning the contract to provide medical treatment (came into force on 1 April 1995)
Last Updated: mercredi 27 avril 2011