2016: Decision making and legal capacity in dementia
Consent to medical treatment
The WGBO17, 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. 17 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 right to refuse treatment
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.
Consent to research and clinical trials
People who participate in medical research must have given their consent prior to participating. They must be given sufficient time for making a balanced decision between informing and asking permission. What is a reasonable period of time, will depend on the type of research?
Adults (18 and older) with advanced dementia, people with intellectual disabilities, patients in coma or those with serious mental illness often do not understand the study. If a person can no longer consent to participation in clinical research, a representative may give consent on his/her behalf. This could be someone who has been appointed by the court, such as a guardian or a mentor. If there is none, someone who has the power of attorney can give permission. If there is none, the spouse or partner can give consent. Is there none, the parents, adult children or siblings (in this order) can give consent.
Article 450 of the WGBO19 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.
19 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)
Issues surrounding the loss of legal capacity
From 1838 until 1982, the only measure for the protection and representation of incapacitated adults was the curatele (full guardianship). Curatele involved the appointment of a guardian and the loss of legal capacity. If guardianship had been established due to a mental illness or handicap, the loss of legal capacity concerned the person’s financial and personal matters. However, it became clear that the all or nothing approach to mental capacity was not necessary or suitable, and in certain respects was contrary to human and patients’ rights. In 1982, the protective trust (Beschermingsbewind) was introduced. This measure limited the loss of legal capacity to financial decisions. Later, in 1995, another measure was introduced which was known as mentorship (Mentorschap). Contrary to the protective trust, mentorship is limited to non-financial matters such as nursing, care, treatment and guidance. According to Blankman29, it can be deduced from jurisprudence that the least far-reaching protective guardianship measure should be adopted. Recommendation No. R (99)4 of the Committee of Ministers to Member States on principles concerning the legal protection of incapable adults (which was adopted on 23 February 1999) states the need for proportionality in the provision of legal protection for incapable adults. According to principle 6: “Where a measure of protection is necessary it should be proportional to the degree of capacity of the person concerned and tailored to the individual circumstances and needs of the person concerned. The measure of protection should interfere with the legal capacity, rights and freedoms of the person concerned to the minimum extent which is consistent with achieving the purpose of the intervention.”
Proxy decision making
In the following sections, the three different guardianship measures will be examined in the following order: 1. full guardianship, 2. the protective trust, 3. mentorship.
The conditions for appointing a (full) guardian
The legal provisions relating to the establishment of full guardianship can be found in title 16 (articles 378 to 391) of the Civil Code. There are several reasons which can justify the appointment of a guardian during minority. One such reason is that on account of mental disturbance an adult, albeit only at intervals, is not in such condition as to pay proper attention to his/her interests.
How guardianship is arranged
According to article 379, full guardianship may be requested by the adult concerned, by his/her spouse or partner, blood relatives of direct descent, others up to and including the fourth degree or by his/her guardian. It can also be requested by the nursing home where the person lives or public prosecutor.
The judge to whom the request is made or was last made, may appoint an interim receiver for the period leading up to the decision. The guardian takes up his/her duties on the day after the registrar gives notice of the appointment and the interim administration ends on that day. If the application for guardianship is rejected, the administration of the interim receiver ends the day after the judgement unless the judge determines otherwise.
The choice of guardian
The judge appoints a guardian at the same time as guardianship is ordered or as soon as possible thereafter. As far as possible, the judge respects the expressed preference of the person affected unless there are sound reasons for not doing so. If the person is married or has any other partner for life, this partner shall be appointed by preference unless the adult objects. Alternatively, one of his/her parents, children, brothers or sisters shall be appointed as guardian.
Duration of the guardianship measure
Guardianship ceases whenever a judgement is made that the original causes for it no longer exist. A request or application for ending the guardianship may be made by the same people who are entitled to request or apply for guardianship. Guardianship also ceases when a protective trust or mentorship is arranged.
The guardian may ask to be discharged from his/her duties at any time if there are valid reasons. The request may also be made by the Public Prosecutor or the Court. A guardian who is not the spouse or partner for life of the adult concerned or a blood relative may be discharged if s/he has carried out the duty of trustee for at least eight years, provided that the court is able to find a suitable successor.
The duties and responsibilities of guardians
The duties of the guardian are determined by the judge at the time of appointment. The section below provides details of how the property of the adult concerned and his/her financial affairs are handled. Once a guardian has been appointed, the adult is no longer competent to enter into legal transactions unless the guardian gives his/her authorisation (provided that the guardian has authorisation for such acts). Authorisation for such acts must be specific and given in writing. The guardian may place at the disposal of the adult sums of money which s/he may use for the purpose of maintenance, e.g. to buy food and clothes.
In article 381 it is stated that the provisions of articles 453 and 454 of the Civil Code (relating to mentorship) are also applicable. Article 453 states that the guardian is not competent to enter into legal transactions relating to care, treatment and attendance and so the guardian (in this case) may act in such matters on his/her behalf. If the adult objects to medical decisions taken by the guardian, they will only be adhered to if it is clearly necessary in order to avoid serious harm to him/her. According to article 454, the guardian must try to involve the adult as much as possible in the performance of his/her duties. This means encouraging him/her to enter into legal and other dealings, provided that s/he is in a fit state to make a reasonable assessment of his/her interests in the matter.
How the financial affairs of the adult concerned are handled?
As mentioned above, the judge may appoint an interim receiver and determine the extent of his/her duties. This receiver may be granted authority to handle all or specified property belonging to the adult. The judge may also grant other powers to the receiver, but none which a curator does not possess. Unless the judge determines otherwise, the person whose full guardianship is sought may not carry out any act relating to ownership or disposal of property without support of the receiver. The judge may decide that debts of the adult cannot be recovered from his/her property which is under administration. This measure may continue if and when a permanent receiver is appointed.
As soon as a guardian is appointed the duties of the interim receiver end and s/he must provide the guardian with accounts and justification for his/her acts. If the interim receiver is appointed as guardian, this must be given to the cantonal judge.
Remuneration of the guardian
The guardian receives payment according to a fixed standard.
The protective trust
According to Blankman30, one of the reasons for introducing protective trusts into Dutch law was to prevent the elderly from being financially exploited by their families. The provisions for setting up a protective trust are covered in title 19 of the Civil Code. According to article 431, a protective trust may be set up for an adult who, as a result of his/her physical or mental condition, is either temporarily or permanently incapable of managing his/her interests in property. This includes property which s/he owns partly through marriage, provided that it is not already under the exclusive control of his/her spouse.
How a protective trust is arranged?
The establishment of a protective trust may be requested by the person him/herself, the spouse or partner, direct blood relatives of up to fourth degree, a guardian or mentor, the nursing home where the person lives and the Public Prosecutor. It is the responsibility of a judge to decide on the matter. A judge who is deciding on the appointment of a guardian may decide to set up a protective trust as a less intrusive alternative.
Who may be appointed administrator
Until a decision is made, a temporary administrator may be appointed. The choice of persons to administer the protective trust should follow the expressed preference of the person unless there are sound reasons not to.
Unless a preference has been stated, the administrator should be selected in the following order of preference: the spouse, partner or one of the person’s parents, children, brothers or sisters. A person who lacks legal capacity or is bankrupt cannot be an administrator.
The judge may appoint one or more administrators if this would be in the person’s best interests. In this case, each administrator has the authority to act alone. Should there be a difference of opinion between the administrators, the cantonal judge must decide on the matter. The judge may also appoint a legal person.
The duties and responsibilities of the administrator
The duties of the administrator of the protective trust are limited to financial affairs (e.g. property). S/he must ensure that the person’s capital is invested appropriately in so far as it is subject to the administration and is not required to be spent on adequate care for the person. If the person is left an inheritance, the administrator may accept it on his/ her behalf. The administrator is answerable for any acts carried out on behalf of the adult concerned which could be considered to fall short of what would be expected from a good administrator.
How the financial affairs of the adult are handled?
The administrator must make an inventory of all property under administration and deliver a copy to the relevant cantonal court. If the administrator is to manage registered property, a company or partnership or a share in a shipping line, s/he should register this in the Public Register, the Register of Companies or the Register of Ships respectively. Unless the judge decides otherwise, the administrator should open an account with a credit institution registered in accordance with Article 52 of the Supervision of the Credit System Act of 1992.
For the following acts, the administrator must obtain consent from the adult concerned. If this person is not in a fit state to make a decision or if s/he opposes the administrator, then an order must be obtained from the cantonal judge:
- to dispose of and enter into agreements for the disposal of property subject to the administration;
- to accept a present or gift to which liabilities or conditions are attached;
- to lend money or bind the person as guarantor or principal debtor;
- to make an agreement that an estate to which the person is entitled should be left undivided for a defined period;
- to enter into an agreement (except in certain conditions) for the ending of a dispute,
- unless the amount in dispute does not exceed € 700; or
- for any other acts indicated when the protective trust was established.
Remuneration of the administrator
Family members that are appointed do not as a rule receive any remuneration. Professional administrators are entitled to an amount according to a fixed standard. Measures to protect the person subject to a protective trust from misuse of power
The administrator must submit accounts and a justification annually to the person for whom s/he has acted and at the end of the period of administration to his/her successor. This must be done in the presence of the cantonal judge. If the person is not in a fit state to receive the accounts and justifications, they must be given to the cantonal judge. At any stage of the administration of the protective trust, the cantonal judge may call the administrator for a hearing and oblige him/her to provide any information that may be required.
Under the provisions of article 450 (title 20) of the Civil Code on Mentorship, the cantonal judge may institute a mentorship for a person who, due to his/her physical or mental condition, is temporarily or permanently unable to take proper care of him/herself or interests other than those involving property. This measure may also be ordered by the cantonal judge as a less intrusive alternative to full guardianship, if s/he considers that this would be preferable.
How mentorship is arranged
The same people can apply for a mentorship as can apply for a protective trust. In addition, any person in charge of an institution in which the adult concerned is permanently cared for can make a request, but must provide an explanation as to why the other people who were entitled to make the request did not do so. The decision is made by the cantonal judge and comes into effect when the registrar notifies the adult concerned by the measure.
Who may be appointed mentor
If a protective trust has been established and the administrator is a natural person, s/he should preferably be appointed as mentor. People who are not entitled to be the mentor include those who lack legal capacity, those for whom a mentorship has been instituted, “legal persons”, social workers directly involved or acting on behalf of the person and staff or managers of an institution in which the person is accommodated.
The duties and responsibilities of the mentor
The duties of the mentor include responsibility for legal dealings in matters related to the care, treatment and attendance of the person. S/he may grant this person permission to enter into such dealing him/herself. The mentor gives advice on non-financial matters and tries to involve the person in the performance of his/her duties.
Remuneration of the mentor
Expenses occurred by the mentor are payable from the accounts of the adult concerned. In certain cases, the judge may award remuneration according to a fixed standard to the mentor which is deducted from the accounts of the person.
Measures to protect the person subject to mentorship from misuse of power
The mentor must make a report of his/her activities and give it to the cantonal judge whenever asked to do so.
Continuing powers of attorney
There are no special legal provisions in Dutch law concerning continuing powers of attorney.
Capacity In Specific Domains
People who are subject to mentorship or a protective trust may marry, whereas those for whom a guardian has been appointed must obtain the consent of the judge or the guardian.
Adults under full guardianship or under a protective trust or adults for whom a mentor has been appointed do not lose the right to vote.
Under article 381 (title 16) of the Civil Code which deals with full guardianship, the adult concerned is no longer considered competent to enter into legal transactions unless otherwise specified by law. However, the adult can enter into a legal transaction if s/he has the written consent of the guardian, who is authorised to act on his/her behalf in the relevant domain.
In the case of an adult for whom a protective trust has been established, any deal including that involving the sale of property by the person who is not competent, can only be cancelled if it can be proved that the other contracting party knew or should have known about the protective trust.
People who are subject to mentorship or a protective trust may make a will, whereas those for whom a trustee has been appointed cannot make a will on their own; the consent of the judge is required.
The notary is obliged to assess the mental capacity of his/her client for cases like changing a will, the sale or purchase of a house, making a power of attorney, etc. In case of mental incapacity, the notary is not allowed to draw up, authenticate or certify an official document on behalf of his/her client.
A protocol has been developed to assess mental capacity. If a notary does not assess the mental capacity of a client correctly, disciplinary measures can be taken.
According to article 39 of the Dutch Penal Code, a person cannot be punished for a criminal act if s/he is not considered responsible for that particular act due to a pathological disturbance of his/her mental capacities. A forensic expert must determine whether there is a causal link between the criminal act and the mental disorder. The degree of criminal responsibility is usually determined on the basis of a five-point scale, namely:
- total absence of responsibility;
- severely diminished responsibility;
- diminished responsibility;
- slightly diminished responsibility;
- complete responsibility.
Last Updated: Wednesday 08 February 2017