2016: Decision making and legal capacity in dementia
Consent to medical treatment
Part 3 of the consolidating Health Act No. 1202 of 14/11/2014 contains the Patients’ Rights and stipulates that no treatment may be initiated or continued without the patient's informed consent, unless otherwise provided by law or provisions laid down by law or by §§ 17-19. This relates to any patient who is receiving or has received treatment by healthcare professionals. Treatment under this Act refers to examination, diagnosis, treatment, maternity, rehabilitation, health care and prevention and health in relation to the individual patient.
Consent is defined in the Act as “consent granted on the basis of sufficient information by the health professional”. Informed consent can be written, oral form or implied. Once given, consent can be withdrawn at any time. The information must be provided continuously and give an understandable presentation of the disease, the study and the proposed treatment. The information must be given in a considerate manner, tailored to the individual requirements in terms of age, maturity, experience, etc. The information shall include information on relevant prevention, treatment and care options, including information about other medically justifiable treatment options and information about the consequences of not initiating treatment. The information shall also include information on possible consequences of treatment options, including the risk of complications and side effects if the patient objects to disclosure or obtaining health information, information must be more extensive if treatment entails an obvious risk of serious complications and side effects
For a people who lack capacity for giving informed consent, as it could be the case of some people with dementia, the closest relatives can give informed consent to treatment. In cases where the person is under guardianship that covers personal circumstances, including health conditions, cf. Guardianship Act § 5, the informed consent should be given by the guardian. If a person is permanently incapable of giving informed consent, and has no family or guardian, the health professional can carry out the treatment if the treatment is endorsed by an independent health professional (i.e. the professional has knowledge in the area and has not previously participated in or will participate in the examination of the patient). The law states that the person who cannot give informed consent must be informed and involved in the deliberations to the extent that he/she can understand and that this would not cause injury. This includes taking into account the person’s views if they are current and relevant. Section 4 of § 18 envisages the case where a relative or guardian might use the power to consent in a way which could result in injury to the patient or which might jeopardise the treatment. If the health provider feels that this is the case, he/she can proceed with the treatment, provided that approval is obtained from the relevant official medical institution.
Consent to clinical trials
The Law on Science Ethical Treatment of health science research projects (Act No. 593 of 14/06/2011) defines consent to research as a decision which is communicated in writing, dated and signed or communicated electronically with the use of digital signature to participate in a health science research project. Participants should receive comprehensive information on the nature, importance, scope and risks of participating and receive the appropriate documentation. Consent should be is given voluntarily by a person who is able to give its consent.
In the case of people who lack capacity to consent, if the person is under a guardianship which includes the power to consent to participation in health research, consent should be given by the guardian (§ 5 of the Guardianship Act of 2007). Surrogate consent on behalf of adults lacking capacity (who are not under guardianship) can be given by the next of kin, the general practitioner or the medical officer of health. The surrogate consent shall be an expression of the subject's interest.
The legal status of advance directives
Advance directives have legal status in Denmark according to the consolidated Health Act (2014). Any person over the age of 18 who is not already under guardianship can write an advance directive. Capacity is presumed. It is not necessary to involve a doctor or notary. There is a registration procedure in that advance directories must be sent to a Central Registry. The validity of advance directives is not limited to a set period of time.
What an advance directive can cover
Such a will may specify:
- That life prolonging treatment would not be desired if the testator were facing una- voidable death;
- That life prolonging treatment would not be desired in case of illness, advanced debilitation due to old age, accidents, heart failure or similar situations that cause such a severe invalidity that the testator would be permanently unable to take care of him/herself physically and mentally.
Life prolonging treatment is described as meaning treatment where there is no outlook for cure, improvement or alleviation but only to a certain prolongation of life. If a health professional is considering giving life prolonging treatment to a person who is unable to consent, he/she must consult the Will Registry to check whether the person has made one. Wishes in line with number 1 above are legally binding and must therefore be respected whereas wishes in line with number 2 above are merely advisory but must be registered in the medical notes.
Obligation to comply with instructions contained in an advance directive
A person may specify in an advance directive that life-supporting treatment is not desired should they be facing unavoidable death i.e. where there is no outlook for cure, improvement or alleviation but only to a certain prolongation of life. In such cases, doctors must consult the Will Registry to check whether the patient has made an advance directive. If so, it is considered as legally binding.
A person may also or alternatively specify in an advance directive that life-supporting treatment is not desired in case of illness, advanced debilitation due to old age, accidents, heart failure or similar situations that cause such a severe invalidity that they would be permanently unable to take care of themselves physically and mentally. In such cases, doctors must again consult the Will Registry to check whether the patient has made an advance directive. If so, it is considered as advisory.
If a person expresses wishes just before losing capacity which differ from those contained in the advance directive, doctors normally take these wishes into account.
Amending, renewing and cancellation of advance directives
An advance directive can be amended or cancelled at any time simply by informing the Will Registry. This can be done by a person with and presumably without capacity (provided that they have sufficient capacity to be able to inform the Will Registry).
Issues surrounding the loss of legal capacity
Chapter 6 of the Guardianship Act (No. 1015) of 20 August 2007 deals with the issue of legal competence. The term “den umyndige” (the legally disqualified) is used to refer to a person who has been declared incapable of managing his/her own affairs. Such disqualification is not an automatic process of the guardianship process. It is used to prevent a person from putting their own assets and financial interests at risk and/or to prevent them from being financially exploited. In 2003, less than 10% of guardianship judgements were supplemented by legal disqualification (Danielsen, 2007). Once a person has been classed as legally disqualified, s/he can dispose over what s/he has earned after having been deprived of the right to legally conduct business, can dispose of this as a gift or as a free inheritance through a will and can spend what has been left by the guardian. Moreover, guardianship does not entail the loss of legal capacity to act in personal matters. The person under guardianship is legally responsible unless he or she has been officially deprived of the legal right to conduct business.
Proxy decision making
Conditions for the appointment of a guardian
Chapter 2 of the Guardianship Act (2007) deals with the guardianship of adults who are unable to take care of their own affairs due to mental illness (including severe demen- tia), retarded psychological development or other forms of serious impaired health. As long as three criteria have been met (medical, legal and needs based), a guardian can be appointed.
The system of guardianship is extremely flexible. A guardian (or joint guardians) can be appointed to handle the person’s financial affairs and/or personal matters and in both cases, guardianship can be limited to specific assets or matters.
However, the appointment of a guardian is only necessary if the personal affairs of a person with limited or even non-existent capacity cannot be satisfactorily managed in an informal way.
How is guardianship arranged
The request can be made by the person him/herself, the person’s spouse, children, parents, siblings or close relatives; the Municipal Council; the Public administration or the Chief of Police. The same people can also request a change or cancellation of the guardianship, as can the guardian him/herself. The request is then sent to the Public administration (to the court if it involves a request for the loss of the right to conduct business). The person making the request must provide justification and state the nature and extent of the proposed guardianship. The Public administration decides on guardianship unless it is considered inappropriate to handle the matter administratively or if the person objects, in which case, it is handed over to the court. All final administrative decisions can be brought before the court by the person concerned or his/her close relatives. However, in 2003 only 16% of guardian- ship cases were handled in court and there were only 3 appeals against administrative decisions between 1997 and 2006 (Danielsen, 2007).
The court is also responsible for making the decision if the person’s right to conduct busi- ness is to be suspended16, i.e. only a judge can remove a person’s legal capacity.
In order to decide whether guardianship should be established, the Public administra- tion (Statsforvaltningen) or the court obtains a declaration from a doctor on the state of health of the person and may contact people who know the person for additional information.
In all cases, the person in question has the right to be informed of the proceedings and can make a written or verbal statement on the matter if s/he so desires and is still able to do so.
Who can be a guardian
Most guardians (about two thirds) are relatives or close friends but if none are available or willing to be guardian or if there are disagreements or a conflict of interests, a profes- sional guardian is appointed, e.g. a lawyer, a member of the clergy or a social worker.
The duties and responsibilities of guardians
The powers of the guardian depend on the particularities of the court decision. Gener- ally speaking, however, the guardian is responsible for taking care of the interests of the person under guardianship. Whilst the decision is being made by the Court or Council, a temporary guardian may be appointed. Guardianship only covers major legal issues which are stipulated in the guardianship order. It does not cover everyday decisions concerning the welfare and supervision of the person, e.g. shopping, taking care of laundry, cleaning, etc. The distinction between legal decisions and welfare/supervision decisions is not always clear-cut, although according to Buss, legal decisions include those relating to employment, accommodation and, if necessary, dealing with public authorities.
Joint representation is possible whereby the guardian and the adult have to act jointly. This kind of representation is used if a person only needs help to administer their capital and take care of their economic interests. Its use has gone down from 10% to 5% of all cases of guardianship between 1997 and 2003 (Danielsen, 2007)
One of the personal decisions covered by §5 of the Guardianship Act is to authorise the participation of a person with impaired or non-existent capacity in biomedical trials. However, it is important to note that whilst the guardian can make certain decisions, s/ he cannot make a decision to which the person under guardianship is opposed and has no legal right to enforce decisions. Consequently, if a person with dementia is moved to a nursing home on the decision of the guardian and s/he is opposed to this move and leaves, the guardian cannot have the person detained or force him/her to stay.
If guardianship includes management of the person’s financial affairs, then s/he must ensure that assets are preserved and yield a reasonable return. The guardian must fur- ther ensure that money is used for the person’s own benefit and can if s/he sees fit, entrust money so that the person under guardianship can see to his/her own needs. If the person has been declared legally disqualified, the guardian can prevent him/her from disposing of resources (with the Public administration’s approval and if this is con- sidered necessary for the welfare of the latter).
How the financial affairs of the person under guardianship are handled?
Chapter 5 of the Guardianship Act (No. 1015) of 20 August 2007 provides clear instructions for the management of the person’s financial affairs, i.e. cash, bonds, mortgage deeds, inheritance, investments etc. The person’s assets and any inheritance to which s/he is entitled must be preserved in the form they had when guardianship was com- menced. Any future consumption of assets (including investment) must be approved by the Public administration.
The guardian is responsible for real estate, personal property, claims to payment in kind and sums under an amount which is set by the Minister of Justice and is currently EUR 10,000. Cash, disposable means, bonds, mortgage deeds and other securities must be handled by the management department of specific financial institutions which have been approved by the Minister of Justice. They are called forvaltningsafdelinger. If the guardian wants to have cash invested, there are very few possibilities. For example, bonds have to be sold on the regular market and only half of the capital can be invested in shares (only 15% in any one company) (Danielsen, 2007).
At the beginning of the guardianship, it is the guardian’s duty to draw up a list of assets and liabilities and to record, note and certify registration of legal disqualification.
Measures to protect the ward from misuse of power
Guardians must try to involve the person under guardianship when making important decisions, although this obligation is limited to the extent that the person is able to understand. If s/he is married (and not separated) a declaration must be obtained from the spouse. The guardian cannot oblige the person under guardianship to stand bail or provide security for a third party.
The guardian must keep a record of the administration of assets and use of income in line with the rules set by the Minister of Justice. The latter can also require the guardian to obtain approval from the Public administration for certain decisions which may include the disposal of income.
Permission from the regional office is needed to make decisions of an unusual character. Permission is also needed to buy or sell real estate, make debts, make gifts (unless they are of no great significance) and to refuse gifts. The regional offices can request information from guardians and instruct them to make certain decisions.
If the guardian neglects his/her obligations, s/he is responsible for compensation to the person under guardianship for damage caused either intentionally or as a result of negligence. A guardian can be dismissed if it is found that s/he has misused his/her position, if s/ he is found to be unsuitable for the assignment or if it is necessary out of concern for the person under guardianship. The appointment is annulled if the guardian him/herself becomes subject to guardianship.
In certain circumstances, an appointed guardian may be unable to carry out his/her duties. This could happen if the guardian entered into a legal transaction with the person under guardianship, if there was a clash of interests in a legal matter, if the guardian was for any reason prevented from carrying out his/her duties. In such cases a special guardian would be appointed by the Public administration. If the events preventing the guardian from carrying out his/her duties are merely of a temporary nature, another guardian can be appointed on a temporary basis.
Compensation and liability of guardians
Relatives and friends are not paid for their services but can get necessary expenses refunded. Professional guardians can deduct EUR 300 for the upkeep of their office. They usually receive EUR 700 per annum for dealing with financial issues and EUR 800 for dealing with personal matters. Larger amounts must be approved by the regional office and the request must be justified. The State pays the cost of guardianship unless the person’s income is large enough (e.g. over EUR 20,000) in which case s/he pays the guardian him/ herself (Danielsen, 2007).
Duration of guardianship
A guardianship measure only lasts for as long as the person needs a guardian. If the person becomes capable of managing his/her own affairs again, then the guardianship has to stop.
The right to appeal
Appeals against guardianship measures decided by the Public Administration can be made to the court. Appeals against guardianship measures decided by a court can be made to the High Court.
Capacity In Specific Domains
Marriage and divorce
The guardian has to give his/her consent both to marriage and divorce.
According to Article 1 of the Parliamentary Election Act of Denmark of 2009, every person of Danish nationality, over the age of 18, and permanently resident in the realm, holds a franchise for the Folketing unless s/he has been deprived of his/her legal capacity under section 6 of the Guardianship Act. It is the duty of the local council to correct the electoral list up to and including election day if it receives notification of factors affecting voting rights such as the initiation or abolition of guardianships involving the deprivation of legal capacity (Article 22, §2).
If a public notary does not consider that a person has testamentary capacity, s/he must refuse that person’s will. This is not based on any medical assessment. A court may decide that a will made by a person with mental incapacity is invalid.
According to §§ 6 and 13 of the Guardianship Act (No. 1015) of 20 August 2007, a person can be deprived of the right to conduct business. This protective measure can be applied if, when determining the scope and extent of guardianship, the person with dementia is deemed to be incapable of carrying out business transactions without jeopardising his/ her assets, income or other economic interests (e.g. through depreciation or interference with economic exploitation). Loss of legal capacity is total in that it cannot be limited to specific assets or affairs. Deprivation of the right to conduct business must be officially registered in accordance with §48 of the Law of Official Registration. However, according to §8, a person should not be deprived of his/her right to conduct business if his/her interests can be sufficiently taken care of by the guardian(s).
If a person who has been judged legally disqualified enters into an agreement independ- ently and without being qualified to do so, the other party can withdraw from the agree- ment, unless it has been fulfilled or approved in a binding manner. However, as long as the legally disqualified person fulfils an agreement to do with personal work, the other party cannot withdraw from the agreement.
A guardian can permit a legally disqualified person to independently carry on a trade or other occupation.
According to article 16 of the Danish Penal Code No. 1068 of 6 November 2008 (with later amendments), a person who commits a crime shall not be punished if s/he is not responsible for his/her actions at the time the offence was committed “owing to insanity or states which may be placed on an equal footing therewith, or a high degree of mental deficiency”. If this state was caused by the consumption of alcohol or other inebriates, a punishment may be imposed if the circumstances call for it. People who at the time of the offence were in a less severe state of mental deficiency shall not be punished unless special circumstances call for a punishment to be imposed.
Last Updated: Wednesday 08 February 2017