Healthcare and decision-making in dementia
Consent to medical treatment
Article 7 of the Act on the Rights of Patients, no.74 /1997 deals with consent to treatment:
“The right of the patient to decide whether s/he will accept treatment shall be respected. The provisions of the Legal Majority Act apply to the consent to treatment of patients who, on account of lack of intelligence or for other reasons provided for by that Act, are incapable of making a decision regarding treatment. In such cases the patient shall nevertheless be consulted to the extent possible. Without prejudice to Article 9, no treatment may be given without the prior consent of the patient, cf. paragraphs 1 and 2. The consent shall be in writing whenever possible and indicate the information the patient has been provided with and that he has understood the information.”
Consent in case of emergency
Consent can be presumed if a patient is unconscious or unable to express his/her will and urgent treatment is needed, unless it is known with certainty that he/she would have refused to accept treatment (article 9).
Refusal and withdrawal of consent
Article 8 of the Act on the Rights of Patients, no.74/1997 deals with refusal and withdrawal of consent:
“If the patient refuses to accept treatment, a doctor shall inform him/her about the possible consequences of his/her decision. The patient may discontinue treatment at any time, without prejudice to other laws. If the patient refuses to accept treatment, his/her doctor or the health worker supervising the treatment shall inform him/her of the possible consequences of his/her decision. (…/…) The decision of a patient to refuse to accept or to discontinue treatment shall be recorded in his/her clinical record and it shall be confirmed that s/he has received information on the possible consequences of his/her decision.”
Consent to the donation of organs and/or human tissue
The Directorate of Health issues organ donation cards which people can fill in at their discretion and which authorize the removal of organs or other biological materials after death. However, it is not clear what the situation would be for people who do not carry such a card.
Consent to participation in the training and instruction of students
Article 11 states a patient must be informed if students are to be present during his/her treatment and he/she has the right to refuse to take part in such training and instruction.
Consent to research
Article 10 of the Act on the Rights of Patients, no. 74/1997 sets conditions for the participation of patients in scientific research. It states:
“A patient shall give his formal consent prior to participation in scientific research. Before such consent is given detailed information shall be provided on the scientific research, the possible risks and benefits involved and what the participation entails. It shall be explained to the patient that he can refuse to participate in scientific research and that he can cease participation at any time after it has commenced. The provisions of Article 15 apply to access to information contained in clinical records, including biological samples, for the purposes of scientific research. It is prohibited to conduct scientific research on a patient which does not fulfill the conditions of Article 2 (4).”
The above paragraph is reproduced in Regulation no. 552/1999 on Scientific Research in the Health Sector, with the addition of a further statement i.e. that the information shall be given in such a manner that the participant can understand it. Article 4 of this regulation states that the interests of the individual shall invariably be given priority over the interests of science or of society as a whole.
Although there is no specific reference to the participation of people lacking legal competence in scientific research in the Act or the Regulation, the latter outlines the role of ethics committees and the National Bioethics Committee in evaluating project proposals and deciding whether there are any scientific and/or ethical grounds to oppose proposed studies.
Please also see section on confidentiality/disclosure of information to other people.
It is stated on the website of the Prime Minister’s Office that by signing a living will, individuals can influence decisions that will be made regarding treatment at the end of their lives, and thus free their closest relatives from the burden of making decisions. However, it is not clear whether such advance directives have legal status.
Access to information/diagnosis
The right to be informed
Chapter II of the Act on the Rights of Patients of 1997 deals with information and consent. Article 5 states:
“A patient has the right to obtain information regarding:
a. his/her state of health, including medical information on his condition and prognosis,
b. the proposed treatment, as well as information on its course, risks and benefits,
c. possible remedies other than the proposed treatment and the consequences of lack of treatment,
d. the possibility of seeking the opinion of another doctor or other
health workers, as appropriate, regarding treatment, condition and prognosis.”
This information must be provided whenever there is reason to do so and in such a way and under such circumstances that the patient can understand it. It must be entered in the clinical record of the patient that s/he has received this information. According article 6, if the patient is unable to handle the information provided, it must be given to a close relative or the patient’s legal guardian.
Access to medical files
According to article 14 of the Act on the Rights of Patients, no.74/1997, a doctor or another person who maintains a patient’s clinical record is obliged to show it to the patient (or to his/her agent), in full or in part, and to give them a copy if they so request. If the information in the clinical record is considered wrong or misleading by the patient or by his/her agent, they are entitled to make comments which must be attached to the record. A charge may be made for the copy (according to article 12 of the Information Act).
If there is information in the medical file which has been provided by someone other than the patient or a health worker, it cannot be shown to the patient without the approval of the person who provided it. If that person is no longer available (e.g. he/she has died, cannot be found or refuses to consent to the disclosure), the file must be sent to the Directorate General of Public Health. The latter must decide within eight weeks whether the patient or his/her agent can have access to the information in question (article 14 of Law no.74/1997).
The right to designate another person to be informed on one’s behalf
Please see below
The doctor’s right to withhold information
The right to withhold information from the patient is covered by article 6 of the above-mentioned law. Two justifiable reasons are given.
The first is that the patient asked not to be informed. In this case, the patient can appoint another person to receive the information on his/her behalf. Details of the refusal of information and/or the appointment of another person must be entered in the patient’s clinical record, including the actual identity of the person appointed to receive information.
The second is that the patient is unable to master the information provided. In this case, the information can be given to a close relative or legal guardian if one has been appointed.
The patient’s right to refuse information
As stated above, this is covered by article 6 of the Act on the Rights of Patients, no.74/1997.
Confidentiality/disclosure of information to other people
Confidentiality and professional secrecy is dealt with in Article 12, Chapter III of the Act on the Rights of Patients of 1997:
A health worker shall fully respect the principal of professional secrecy regarding whatever s/he comes across in the course of his or her work regarding the health, condition, diagnosis, prognosis and treatment of a patient, as well as other personal information. Professional secrecy continues to apply after the death of a patient and after the worker has left his/her job. The worker may provide information for urgent reasons, with due regard to the wishes of the deceased and the interests of those concerned. When a worker is in doubt, s/he can seek the opinion of the Directorate General of Public Health.
Data can be taken from the medical file and used for the purposes of research provided that whenever this occurs all the conditions (mentioned in article 2, §4) for scientific research have been fulfilled and that such access is recorded in the file (article 15).
End-of-life care and issues
Easing of suffering and the presence of other people
Article 23 of the Act on the Rights of Patients, no.74/1997 states that a patient’s suffering must be eased to the best of current ability. Patients have the right to receive support from family, relatives and friends during their treatment and stay. Furthermore, patients and their closest relatives have the right to spiritual, social and religious support. It is not stated in the Act that these provisions are limited to end-of-life treatment, although it is clear that they would also apply to such treatment.
The termination of treatment
Article 24 of the same act specifically refers to the treatment of dying patients:
“A patient has the right to die with dignity. If a dying patient expresses clearly that s/he declines further life-prolonging treatment, or resuscitation efforts, his/her doctor must respect his/her decision. If a dying patient is mentally or physically too ill to decide on his/her treatment, the doctor shall endeavour to consult the relatives of the patient and his/her colleagues before s/he decides on the continuation or termination of treatment.”
According to the European Association of Palliative Care (2006),
“At the current time, there are no initiatives in Iceland that seek the legalization of euthanasia or assisted suicide. The discussion on euthanasia has never received any interest in Iceland, and both lay people and health care professionals seem to have little interest in the topic. A few articles have appeared in newspapers but gained little attention.”
The following extract, taken from Chapter XXIII of the Penal Code on Manslaughter and Bodily Injuries, may have some relevance to the issue of euthanasia and assisted suicide.
Art. 214 of the Penal Code: In case a person be conducive to another person’s committing suicide, he/she shall be subject to [imprisonment for up to 1 year] or fines. If this is done for a selfish purpose the penalty shall be imprisonment for up to 3 years.
Non-assistance to a person in danger
Art. 221 of the Penal Code: Should a person fail to come to the assistance of another whose life is endangered although he/she could do so without endangering his/her life or health or that of others, this will be subject to imprisonment for up to 2 years or fines in case of mitigating circumstances.
Art. 211 of the Penal Code: Anyone who takes the life of another person shall be subject to imprisonment for no less than 5 years or for life.
Art. 213 of the Penal Code: Anyone who takes the life of another person at his/her urgent request shall be subject to imprisonment for up to 3 years.
European Association of Palliative Care (2006), EAPC Task Force on the Development of Palliative Care in Europe – Iceland: http://www.eapcnet.org/download/forPolicy/CountriesRep/Iceland.pdf
Last Updated: Wednesday 27 April 2011