Healthcare and decision-making in dementia
Consent to medical treatment
Consent to treatment is covered by section 6 of the Act on the Status and Rights of Patients, No. 785 of 17 August 1992. According to this Act, patients must be cared for on the basis of a mutual understanding, which means that they must consent to treatment. If they refuse a particular treatment, the doctor must propose another medically acceptable alternative to which they are in agreement. In certain circumstances, a person can be treated against his/her will (please refer to the section on forced internment).
Concerning patients who are unable to consent, section 6.2 and 6.3 of the Act on the Status and Rights of Patients states:
“If a major patient because of mental disturbance or mental retardation or for other reason cannot decide on the treatment given to him/her, the legal representative or a family member or other person closely connected to the patient has to be heard before making an important decision concerning treatment to assess what kind of treatment would be in accordance with the patient's will. If this matter cannot be assessed, the patient has to be given a treatment that can be considered to be in accordance with his/her personal interests.”
“In cases referred to in paragraph 2, the patient's legal representative, a close relative, or other person closely connected with the patient, must give their consent to the treatment. In giving their consent, the patient's legal representative, close relative, or other person closely connected with the patient must respect the patient's previously expressed wishes or, if no wishes had been expressed, the patient's well-being. If the patient's legal representative, close relative, or other person closely connected with the patient forbid the care or treatment of the patient, care or treatment must, as far as possible in agreement with the person who refused consent, be given in some other medically acceptable manner. If the patient's legal representative, close relative or other person closely connected with the patient disagree on the care or treatment to be given, the patient shall be cared for or treated in accordance with his or her best interests.” (9.4.1999/489)
However, a person/persons who make a decision on behalf of a patient cannot forbid treatment which is necessary to ward off a threat to the life or health of the patient (section 9).
Consent in case of emergency
Section 8 of the Act on the Status and Rights of Patients deals with emergency treatment. It states:
“A patient has to be given treatment necessary to ward off a hazard imperilling his/her life or health even in cases where it is not possible to assess the patient's will because of unconsciousness or other reason.
However, if the patient has earlier steadfastly and competently expressed his/her will concerning treatment given to him/her, he/she must not be given treatment that is against his/her will.”
The right to refuse treatment
A competent patient has the right to refuse treatment. According to the Act on the Status and Rights of Patients (section 6.1), if a patient refuses a particular treatment, the doctor must propose another medically acceptable alternative to which they are in agreement.
Health care proxies also have the right to refuse treatment on behalf of an incompetent patient. According to section 6.3 of the Act on the Status and Rights of Patients, if the patient's legal representative, close relative, or other person closely connected with the patient forbid the care or treatment of the patient, care or treatment must, as far as possible in agreement with the person who refused consent, be given in some other medically acceptable manner. However, section 9 stipulates that health care proxies cannot forbid treatment which is necessary to ward off a threat to the life or health of the patient.
The right to withdraw consent
Competent patients have the right to withdraw consent.
Consent to non-conventional treatment
Competent patients have the right to give consent to non-conventional treatment.
Consent to the donation of organs and/or human tissue
It is possible for patients to consent to the donation of organs and human tissue through advance directives. Health care proxies can give such consent after the death of the patient.
Consent to research
Act N° 488 on Medical Research came into force on 1 November 1999. In this act, medical research is defined as being research which interferes with the integrity of a human being or a human embryo or foetus and whose intention is to increase knowledge of the cause, symptoms, diagnosis, treatment or prevention of the disease or its nature in general.
Paragraph 7 deals with consent from disabled subjects. This includes people who are unable to give their consent due to a mental health disorder, mental handicap or other equivalent reason.
Research can only be carried out on such people if the same scientific results could not be attained using other subjects and provided that the risk of causing damage or stress is limited. Furthermore, research can only be carried out if it could be expected to be directly beneficial to the participant or to other people either of the same age or with the same medical condition. Even if these conditions have been fulfilled, the participant's legal representative, close relative, or other person closely connected with the patient must give written consent after having received the necessary relevant information. The consent has to be given in accordance to the presumed will of a participant. The provisions of article 6 also apply in that consent can be withdrawn at any time before completion of the research. Finally, if the participant objects to any procedure used as part of the research, he or she must not be forced to undergo the procedure.
Advance directives and health care proxies
The legal status of advance directives
Advance directives have legal status in Finland according to section 8 of the Act on the Status and Rights of Patients (No. 785/92 of 17 August 1992).
Section 8 of the Act on the Status and Rights of Patients deals with emergency treatment. A situation could arise whereby a patient, who is in need of emergency treatment, is unconscious or unable to express his/her will. According to section 8, doctors cannot give a treatment that is against his/her will, as expressed steadfastly and competently at some point in the past. In the sense that this section refers to the necessity to respect the previously expressed wishes of a person who is no longer able to state his/her preference regarding treatment, this can be considered as legitimising a kind of advance directive.
Paragraph 6.3 of the Act on the Status and Rights of Patients can also be interpreted as involving the possible use of advance directives in substitute decision making with regard to care  .
There are three categories of people who can decide on behalf of a person with incapacity:
- the legal representative who could be either a guardian who is entitled to represent his/her client in issues linked to the client’s person or a person appointed by the patient such as a power of attorney or continuing power of attorney in health care issues.
- a family member or
- another person who is closely connected to the patient.
These people are not placed in any order of priority. However, the Ministry of Social Affairs and Health has plans to alter the Act on the Status and Rights of Patients in such a way that there would be a priority list of the proxy decision makers. After the alteration the possible legal representative would have priority to make decisions.
Conditions surrounding the writing, validity and registering of an advance directive
A person must have sufficient capacity to make a valid advance directive. Competence is presumed unless proven otherwise. In case of doubt, a doctor should assess a person’s capacity.
There is no set procedure for writing or registering advance directives but they should be recorded in the patient’s medical file. An advance directive can be made orally (e.g. by a person in hospital) or in writing. If made in writing, it is advisable to have two witnesses. A doctor and/or lawyer may be involved in the process of making an advance directive but this is not necessary.
Advance directives are not limited to a set period of time.
There is a new decree from the Ministry of Social Affairs and Health on Medical Files (30.3.2009/298). Paragraph 18.4 of the Decree on Medical Files states that if a patient wishes to express (orally) his/her steadfast will regarding future medical treatment, it should be recorded clearly, along with his/her signature, in the medical files. It is also possible to attach a separate advance directive to the medical files.
What an advance directive can cover
The Act on the Status and Rights of Patients states that in emergency situations “doctors cannot give a treatment that is against the will of a patient, as expressed steadfastly and competently at some point in the past”.
In literature on jurisprudence it is interpreted that an advance directive can cover at least the following:
- The treatment of medical conditions;
- Care and welfare decisions;
- Life-supporting treatment;
- Life-saving treatment; and
- The appointment of a health care proxy.
Nowadays, in practice, there are also so-called positive advance directives. These documents can express many kinds of wishes e.g. what kind of food and drinks the person likes, what their favourite clothing is etc.
Obligation to comply with instructions contained in an advance directive
In the case of emergency treatment, advance directives are legally binding. In literature on jurisprudence it is interpreted that they are legally binding in other cases too. At least it is good medical practice to comply with them.
The Ministry of Social Affairs and Health has plans to alter the Act on the Status and Rights of Patients. After the alteration, doctors will not obliged to comply with advance directives if it is obvious that the advance directive is based on a person’s false perception of their health condition, the nature of the illness or the effectiveness of the treatment methods and medication proposed. Similarly, doctors should not comply with an advance directive if the patient’s will concerning treatment and care has changed for the above-mentioned or a similar reason.
If it would be against a doctor’s personal beliefs to comply with instructions contained in an advance directive, the doctor must find a colleague who is willing to take over the treatment of the patient.
Amending, renewing and cancelling advance directives
An advance directive can be amended, renewed or cancelled at any time. This can be done verbally, in writing or through behaviour which clearly indicates this decision. It is not necessary for a person to have full legal capacity (i.e. in every domain) as a greater level of capacity is needed to write an advance directive than to cancel it. This has been discussed in medical circles as well as in literature on jurisprudence.
Access to information/diagnosis
The right to be informed
Section 5 of the Act on the Status and Rights of Patients, No. 785/92 of 17 August 1992 contains the following provisions regarding the patient's right to be informed:
"A patient shall be given information about his/her state of health, the significance of the treatment, various alternative forms of treatment and their effects and about other factors related to his/her treatment that are significant when decisions are made on the treatment given to him/her. However, this information shall not be given against the will of the patient or when it is obvious that giving the information would cause serious hazard to the life or health of the patient,
Health care professionals should try to give the information in such a way that the patient can understand it. If the health care professional does not know the language used by the patient or if the patient because of a sensory handicap or speech defect cannot be understood, interpretation should be provided if possible."
The above text can be interpreted as granting patients the right to be informed of the diagnosis.
Under section 9.1 of the Act on the Status and Rights of Patients, “the right to be informed and the powers of the patient's representative”, allows for information to be given to certain people in order to enable them to make decisions and consent on behalf of the person with incapacity. The text is as follows:
“In the circumstances referred to in paragraphs 2 and 3 of section 6, the patient’s legal representative, close relative, or other person closely connected with the patient shall be entitled to receive any information regarding the patient's state of health that may be required to enable them to express an opinion and give their consent. (9.4.1999/489)”
Access to medical files
As a general rule, only the patient has access to his/her medical records.
Health care professionals and other people who are working in the medical domain cannot give information about a patient to outsiders without the written consent of the patient. (See Section 13 of the Act on the Status and Rights of Patients, no. 785/92)
The right to designate another person to be informed on one’s behalf
Under the government’s proposal of the Act on the Status and Rights of Patients (185/1991) the legal representative is either a person appointed by a patient or a guardian (appointed by a court). If a patient has appointed someone to make health care decisions on his/her behalf (for example via an advance directive), such person has the right to be informed regarding the patient’s state of health as stated in section 9.1 of the Act on the Status and Rights of Patients (see above). A patient can also appoint a “continuing power of attorney in health care issues” in advance of his/her incapacity (please see The Act on Continuing Powers of Attorney (648/2007)). Such donee is also a legal representative and also has the right to be informed under section 9.1 of the Act on the Status and Rights of Patients.
A legal representative (guardian), relatives and people who are close to the person with dementia can also be informed on his/her behalf although in their case, they would not actually have been designated by the person with dementia.
The doctor’s right to withhold information
Section 5 of the Act on the Status and Rights of Patients, No. 785/92 of 17 August 1992 states that a doctor has the right to withhold information:
“when it is obvious that giving the information would cause serious hazard to the life or health of the patient.”
See section “access to information” above
The patient’s right to refuse information
Section 5 of the Act on the Status and Rights of Patients, No. 785/92 of 17 August 1992 contains the following provisions regarding the patient’s right to refuse information:
“..information shall not be given against the will of the patient.”
See section “access to information” above
Confidentiality/disclosure of information to other people
Section 10 of the Constitution states that the private life, honour and home of every person shall be secured and that detailed provisions on the protection of personal data shall be prescribed by Act of Parliament. Patients must be treated in such a way that their human dignity is not violated and that their convictions and privacy are respected (section 3 of the Act on the Status and Rights of Patients, No. 785/92).
Apart from the exception contained in section 9.1 of the Act on the Status and Rights of Patients, information about patients is confidential. Section 13 of the Act on the Status and Rights of Patients (no. 785/92) covers the confidentiality of information in patients' medical files. As stated above in “the right to access medical files”, health care professionals and other people who are working in the medical domain cannot give information about a patient to outsiders without the written consent of the patient. Section 13.3 of section 13 of this act includes further provisions:
- information included in patient documents may be given if there are express provisions on giving it or on the right of access to it in the law;
- information necessary for the arranging of examination and treatment of the patient may be given to another health care unit or health care professional, and a summary of the treatment provided may be given to the health care unit or the health care professional that referred the patient for treatment and to a physician possibly appointed to be responsible for the care of the patient in accordance with the patient's or his/her legal representative’s oral consent or consent that is otherwise obvious from the context; and
- information necessary for arranging and providing the examination and care of a patient may be given to another Finnish or foreign health care unit or health care professional, if the patient, owing to a mental health disturbance, mental handicap or for a comparable reason is not capable of assessing the significance of the consent and he/she has no legal representative, or if the patient cannot give the consent because of unconsciousness or for comparable reason;
- information about the identity and state of health of a patient may be given to a family member of the patient or to other person close to the patient, if the patient is receiving treatment because of unconsciousness or for another comparable reason, unless there is reason to believe that the patient would forbid this; and
- information on the health and medical care of a deceased person provided when the person was still living may be given, upon a justified written application, to anyone who needs the information in order to find out his/her vital interests or rights, to the extent that the information is necessary for that purpose; the acquiring party may not use or forward the information for some other purpose.
Section 13 of the Act on the Status and Rights of Patients (30.6.2000/653) specifically addressed the issue of confidentiality of information contained in patients’ records.
Paragraph 13.1 states that information contained in patients’ records shall be confidential. Paragraph 13.2 states that health care professionals and other people working in or for health care units shall not disclose to outsiders information contained in a patient’s medical records without the written consent of the patient. If the patient is not capable of giving such consent, it can be given by his/her legal representative. In this Act, the term “outsiders” refers to people other than those who are involved in the care of the patient or in carrying out tasks related to the person’s care within or on behalf of a health care unit. The obligation to respect confidentiality remains in force even when the person is no longer employed or carrying out tasks on behalf of the health care unit.
End-of-life care and issues
Decisions about palliative care are made by a doctor but need to be discussed with the patient or patients’ health care proxy/proxies.
Special leave for carers in paid employment
The Act on Support for Informal Care (937/2005) came into effect at the beginning of 2006. Support for informal care is a statutory social service. The municipality is responsible for organising the support within the limits of its resources.
The purpose of the Act is to promote informal care that is in the interests of the person cared for (the client) by securing sufficient access to social welfare and health care services and by safeguarding the continuity of care. Support for informal care encompasses necessary services for the client, and compensation, leave and support services for the informal carer.
In section 5.2 of the Act it is stated that if, during a heavy period of care (e.g. looking after a terminally ill person), a carer is unable to go to work, he/she receives a minimum allowance of EUR 600/month.
Active euthanasia is not permitted.
A competent patient may, however, refuse life-saving or life-sustaining treatment or write in an advance directive the kind of treatment that he/she would like to refuse in the future, should it be needed. Healthcare professionals who respect such wishes, which could be described as passive euthanasia, would not be prosecuted.
Healthcare proxies cannot forbid treatment which is necessary to ward off a threat to the life or health of the person they are representing.
Assisted suicide is not considered a criminal act under the Penal Code of Finland (39/1889 and subsequent amendments).
Homicide, murder and killing
The Penal Code of Finland (39/1889; amendments up to 650/2003 as well as 1372/2003, 650/2004 and 1006/2004 included) includes the following articles which related to homicide, murder and poisoning:
Chapter 21 - Homicide and bodily injury (578/1995)
Section 1 - Manslaughter (578/1995)
(1) A person who kills another shall be sentenced for manslaughter to imprisonment for a fixed period of at least eight years.
(2) An attempt is punishable.
Section 2 - Murder (578/1995)
(1) If the manslaughter is
(2) committed in a particularly brutal or cruel manner;
(3) committed by causing serious danger to the public; or
(4) committed by killing a public official on duty upholding the peace or public security, or because of an official action;
and the offence is aggravated also when assessed as a whole, the offender shall be sentenced for murder to life imprisonment.
(2) An attempt is punishable.
Section 3 - Killing (578/1995)
(1) If the manslaughter, in view of the exceptional circumstances of the offence, the motives of the offender or other related circumstances, when assessed as a whole, is to be deemed to have been committed under mitigating circumstances, the offender shall be sentenced for killing to imprisonment for at least four and at most ten years.
(2) An attempt is punishable.
Section 8 - Negligent homicide (578/1995)
A person who through negligence causes the death of another shall be sentenced for negligent homicide to a fine or to imprisonment for up to two years.
Section 9 - Grossly negligent homicide (578/1995)
If in the negligent homicide the death of another is caused by gross negligence, and the offence is aggravated (also when assessed as a whole), the offender shall be sentenced for grossly negligent homicide to imprisonment for at least four months and at most six years.
The National Advisory Board on Health Care Ethics (ETENE) (2008), Old Age and Ethics of Care. Report 2008 , Helsinki. (www.etene.org/e/documents)
Sulkava, Raimo: Practice of Competence Assessment in dementia: Finland. In book Stoppe, Gabriela (edit.) (2008), Competence Assessment in Dementia . On behalf of the European Dementia Consensus Network, Springer Verlag. p.109-111.
 Please refer to the section on consent.
Last Updated: mercredi 27 avril 2011