ACT on the Rights of Patients no. 74/1997











ACT on the Rights of Patients
no. 74/1997

THE PRESIDENT OF ICELAND
makes known: The Althing has agreed to this Act and I have confirmed it with my approval:



CHAPTER I
Introduction
Objective
Article 1

The objective of this Act is to ensure specific rights for
patients in accordance with general human rights and human dignity and thus strengthen their legal status regarding the health service, and to support the confidential relationship which must exist between patients and health workers. It is prohibited to discriminate
against patients on grounds of gender, religion, beliefs, nationality, race, skin colour, financial status, family relation or status in other respect.

Definitions
Article 2


Patient: Any person using the health service.
Health worker: Any person working in the health sector who has been authorized by the Ministry of Health and Social Security to perform such work.Treatment: A test or
examination, operation or other service rendered by a doctor or another health worker to diagnose, cure, rehabilitate, nurse or care for the patient.Scientific research: Research conducted
with the aim to achieve further knowledge, making it, inter alia, possible to improve health and cure diseases. An evaluation of the research made by the scientific ethics committee or an ethics committee, pursuant to Article 29, must have revealed that scientific and ethical views do not oppose its implementation.

Quality of the Health Service
Article 3


The patient has the right to the best health service available at each time.The patient has the right to service relative
to his condition and prognosis at each time and the best knowledge available. The health worker shall endeavour to establish a sound relationship with the patient.The patient has the right
to continuous service and cooperation between all health workers and institutions involved in the treatment.


Access to Information on the Rights of Patients
Article 4


The Ministry of Health and Social Security shall ensure that information is available concerning the rights of patients, patients' associations and social security schemes. This information shall be made accessible to patients on the premises and places of work of health institutions and self-employed health workers. Furthermore, an endeavour shall be made to inform the public of the causes and consequences of illnesses in children and adults.



CHAPTER II
Information and Consent
Information on Health and Treatment
Article 5


A patient has the right to obtain information regarding:

a. his 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.

It shall be entered in the clinical record of the patient that information pursuant to this Article has been provided.
Information pursuant to this Article shall be provided whenever there is reason to do so and in such a manner and under such circumstances that the patient can understand it.If the patient does
not understand Icelandic or is dependent on sign language, an interpretation of the information pursuant to this Article shall be provided.

Exemptions from the Principle on Information on Health and Treatment
Article 6

Information pursuant to Article 5 shall be withheld if the patient so requests. A patient can appoint another person to receive the information in his place.It shall be entered in the
clinical record if the patient declines information on his health and prognosis or appoints another person in his place. The identity of the person receiving the information shall likewise be entered, cf. paragraph 1 of this Article and Articles 7 and 25.If the
patient is unable to master the information pursuant to Article 5, the information shall be given to a close relative or, if the patient has been deprived of legal majority, to his legal guardian.

Article 7


The right of the patient to decide whether 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.


Treatment Refused
Article 8


If the patient refuses to accept treatment, a doctor shall inform him about the possible consequences of his decision.The
patient may discontinue treatment at any time, without prejudice to other laws. If the patient refuses to accept treatment, his doctor or the health worker supervising the treatment shall inform him of the possible consequences of his decision. Article 26 applies to a refusal to allow treatment of sick children.The decision of a
patient to refuse to accept or to discontinue treatment shall be recorded in his clinical record and it shall be confirmed that he has received information on the possible consequences of his decision.

Exemptions from the Principle of Consent to Treatment
Article 9


If a patient is unconscious or his condition is such that he is unable to express his will regarding urgent treatment, his consent shall be taken for granted unless it is known with certainty that he would have refused to accept treatment.

Consent to Scientific Research
Article 10


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).

Participation in the Training and Instruction of Students
Article 11


The patient must be informed if students in the health sector are to be present during his treatment, as part of their training and instruction. A patient can refuse to take part in such training and instruction.




CHAPTER III
Confidentiality and Professional Secrecy Professional Secrecy of a Health Worker
Article 12

A health worker shall fully respect the principal of professional secrecy regarding whatever he comes across in the course of his 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 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, he can seek the opinion of the Directorate General of Public Health.


Exemptions from the Principle of Professional Secrecy
Article l3


Professional secrecy pursuant to Article 12 does not apply to incidents on which a health worker is obliged to report pursuant to other legal provisions, such as the provisions of the Child Protection Act. In those cases, a worker is obliged to report the incident to the competent authorities. The worker is no longer bound by
professional secrecy if the patient or his guardian has consented to it. The provisions of the Doctors' Act shall apply
regarding the obligation of a health worker to testify in a court of law.



CHAPTER IV
Handling of Information in Clinical Records Access to Clinical Records
Article 14


A clinical record shall be kept at the health institution where
it is maintained or at the establishment of a doctor or another health worker who maintains it there. A doctor or another person
maintaining a clinical record is obliged to show it to the patient, or his agent, in full or in part, and to give them a copy, if they so request. The same applies to official bodies which according to law examine complaints of patients or agents regarding treatment. It is permitted to charge for a copy of a clinical record according to the provisions of Article 12 of the Information Act.
Information contained in a clinical record, given by a person other than the patient himself or a health worker, shall not be shown to the patient without the consent of the informant. If the informant is deceased or has disappeared or refuses unjustly to give his consent, the Directorate General of Public Health can determine that the patient or his agent shall be given access to the information in question, in full or in part.If a doctor considers that it does not serve the interest of the patient to give the aforementioned parties a copy of the clinical record, the copy must be forwarded to the Directorate General of Public Health immediately for further consideration.
The Directorate General of Public Health shall determine within eight weeks whether the person concerned shall obtain a copy of the clinical record. A refusal from the Directorate General of Public Health is subject to a review by the Minister for Health.
The Minister shall lay down further rules on the delivery and safekeeping of clinical records, after obtaining proposals from the Directorate
General of Public Health and the Icelandic Medical Association.

Article 15


It shall be kept in mind, regarding access to clinical records, that they contain delicate personal information of a confidential nature, cf. Article 12. Clinical records must be
kept in a safe place and access restricted to those workers who must use them.The Data Protection Commission is authorized,
pursuant to the Act on the Recording and Presentation of Personal Information, to give access to information contained in clinical records, including biological samples, for the purposes of scientific research, provided that the research meets the conditions for scientific research, cf. Article 2 (4) of this Act. Such
access may be subject to conditions considered necessary at each time.Every time a clinical record is examined for the
purposes of scientific research, this shall be entered in the record, in keeping with paragraph 1 and 2.

Comments on Information in the Clinical Record
Article 16


If the information in the clinical record is considered wrong or misleading by a patient, or his agent, his comments shall be attached to the record.



CHAPTER V
Treatment
Respect for the Human Dignity of the Patient
Article 17


Health workers, or other individuals who on account of their work have to communicate with the patient, shall treat him with respect. Only those directly involved in the treatment of a
patient shall participate in it. A health worker shall take care to administer the necessary treatment out of sight of uninvolved persons, and to ensure that information regarding treatment is inaccessible to individuals other than the health workers involved.

Waiting for Treatment
Article 18


If a patient has to wait for treatment, the doctor concerned shall explain the reasons for the delay and provide him with information on the estimated waiting time.If it is possible to receive
the necessary treatment sooner elsewhere, the patient must be made aware of the fact.

Order of Priority
Article 19


If it is necessary to place patients waiting for treatment in
order of priority, the order should be based on medical grounds first and foremost and other professional criteria, as the case may be.

Choice of a Health Worker
Article 20


Although the country is divided into health regions in accordance with the Health Service Act, a patient has the right to go to the doctor most convenient for him. A patient also has the right to seek
the opinion of another doctor regarding diagnosis, treatment, condition and prognosis. The same applies in regard to other health workers.

The Patient's Responsibility for His Own Health
Article 21


A patient is responsible for his own health as far as he is able and his state of health permits. He shall, as the case may be, participate actively in the treatment he has consented to.

Rules on Admission and Discharge
Article 22


When a patient is admitted to a health institution, the health workers attending to him shall introduce themselves and their
respective fields of work. Furthermore, he shall be informed about the relevant main rules and practices in force in the institution.
The patient shall be informed about the identity of the doctor who is in charge of his treatment in the health institution.
Before the patient is discharged, his circumstances shall be looked into and adequate home service or other remedies provided, as far as possible. On discharge from a health institution a
patient shall be given, as is deemed necessary, instructions on important matters regarding follow-up, such as drug administration, diet, training and exercise. The instructions shall be in writing if requested.Medical discharge letters and certificates
issued in relation to illness, accidents, hospitalization etc. shall be seen to without undue delay.


Easing of Suffering and Presence of Family and Friends
Article 23


The patient's suffering shall be eased to the best of current ability. A patient has the right to receive support from
his family, relatives and friends during his treatment and stay. Furthermore, the patient and his closest relatives have the right to spiritual, social and religious support.

Treatment of Dying Patients
Article 24


A patient has the right to die with dignity. If a dying patient expresses clearly that he declines further life-prolonging treatment, or resuscitation efforts, his doctor must respect his decision.
If a dying patient is mentally or physically too ill to decide on
his treatment, the doctor shall endeavour to consult the relatives of the patient and his colleagues before he decides on the continuation or termination of treatment.



CHAPTER VI
Special Rules Concerning Sick Children
Information on the Health and Treatment of Sick Children
Article 25


If a patient is under 16 years of age, information pursuant to
Article 5, as well as other information pursuant to this Act, shall be given to parents. Sick children shall be given
information with regard to their age and maturity. However, they have the same right as others to decline information, cf. Article 6.

Consent to the Treatment of Sick Children
Article 26


Parents who have custody of the child shall give their consent
to the necessary treatment of a patient under 16 years of age. Sick children shall be consulted as far as possible and always if they are over 12 years of age. If a parent who has custody of
the child refuses to consent to the necessary treatment, cf. paragraph 1, a doctor or another health worker shall contact child welfare authorities, cf. the provisions of the Child Protection Act.If there is not enough time to seek the assistance of
child welfare authorities, cf. paragraph 2, as the sick child is
in need of acute life-sustaining treatment, the child's health must be the determining factor and the necessary treatment must be started immediately.

Miscellaneous Rules Concerning Sick Children
Article 27


Everything possible must be done to enable a sick child to develop
and enjoy life, in spite of illness and medical treatment, depending on the child's state of health.Children shall be spared
unnecessary tests and operations.Sick children staying
in a health institution are entitled to the presence of their parents or other close relatives, who shall be provided with facilities, as far as possible .The situation permitting, siblings and
friends can visit a sick child in a health institution.
Sick children of school-age shall be provided with tuition suited to their age and state of health.Surroundings and care of
sick children in health institutions shall be suited to their age, maturity and condition.



CHAPTER VII
Right to Complaint
Comments and Complaints about Treatment
Article 28


The patient's comments regarding the service of a health institution shall be directed to the central administration of the institution concerned.If a patient wishes to make
a complaint about his treatment, he may lodge his complaint with the Directorate General of Public Health or the Committee on Dispute Settlement, cf. Article 3 (5) of the Health Service Act No. 97/1990.Employees of health institutions are under
obligation to guide a patient, or his relative, who wishes to forward his comments or make a complaint. Furthermore, the management of a health institution is obliged to look into comments of workers who believe that the rights of patients are being infringed on.
A patient shall receive a reply to his comments and complaints in writing at the earliest opportunity.



CHAPTER VIII
Provisions Regarding Entry into Force etc. The Minister's Power to Issue a Regulation
Article 29


The Minister shall issue a regulation on scientific research in the health sector. It shall, inter alia, contain provisions on a scientific ethics committee and ethics committees, pursuant to Article 2 (4). Furthermore, the Minister is empowered to issue a regulation on the implementation of this Act.

Entry into Force
Article 30

This Act shall enter into force on 1 July 1997.


Done at Bessastaðir, 28 May 1997.


Ólafur Ragnar Grímsson
(L.S.)

Ingibjörg Pálmadóttir.