Healthcare and decision-making in dementia
Consent to medical treatment
Chapter 4 of the Patients’ Rights Act of 1999 addresses the issue of consent to health care. Section 4-3 contains a few relevant provisions:
- To have the right to consent to health care, a person must be at least 18 years of age and have legal capacity.
- Competence to give consent may cease to apply wholly or partly if the patient, on account of a physical or mental disorder, dementia or mental retardation, is clearly incapable of understanding what the consent entails. The health care provider shall decide whether the patient lacks competence to give consent. Based on the patient’s age, mental state, maturity and experience, health personnel shall do their best to enable the patient himself or herself to consent to health care.
- A decision concerning lack of competence to give consent shall state the reasons for the decision and shall be given in writing, and if possible shall immediately be presented to the patient and his or her next of kin. If the patient has no next of kin, the decision shall be presented to health personnel.
If a person has legal capacity but is nevertheless not competent to give consent, the health care provider can decide on his/her behalf for health care that is not of a highly invasive nature. In other cases, the person’s next-of-kin may consent on his/her behalf (section 4-6). If he or she does not have any next-of-kin, a health care provider may consent on his/her behalf after consultation with other qualified health care professionals (section 4-8).
People who have been declared legally incapacitated pursuant to the Act relating to the declaring of a person as incapable of managing his own affairs of 28 November 1898 may consent to health care themselves to the greatest possible extent. If they are unable to do so, their guardian may give consent on their behalf (section 4-7).
Consent in case of emergency
Paragraph 7 of The Health Personnel Act of 1999 deals with the question of emergency health care. It states: Health personnel shall immediately provide the health care they are capable of when it must be assumed that the health care is of vital importance.
Pursuant to the limitations laid down by the Patients’ Rights Act (§ 4-9), necessary health care shall be given, even if the patient is incapable of granting his or her consent thereto, and even if the patient objects to the treatment.
The right to refuse treatment
In January 2009, the Act amending the Patients’ Rights Act was implemented. It resulted in the implementation of a new section in the Patients’ Rights Act entitled “health care for patients without competence to give consent to health care etc.” The purpose of this new section is described in the Act as being to provide necessary health care in order to prevent significant harm to health and to prevent and limit the use of force.
The new section deals with the provision of health care to patients who lack the capacity to consent and are refusing to accept health care. It also covers involuntary admission to or detention in a health institution and the use of restraining measures if considered necessary.
Under §4a of the Patients’ Rights Act, a person can be given compulsory health care if the following conditions are met:
- the patient is 16 years or older
- the patient is considered as a person without consent
- the patient is refusing to accept health care
On the basis of the Act and an examination conducted by an authorised doctor, or another authorised person responsible for care, the application is issued and forwarded to the Norwegian Board of Health Supervision, of which there is an office in each county.
Moreover, it is clearly stipulated that when appraising the need for care it should be considered whether the patient constitutes a danger to him/herself should the compulsory measures not be provided. Compulsory measures must be deemed necessary and be proportionate to the need for health care. Moreover, acceptable voluntary solutions must have been tried prior to any compulsory measures being implemented.
Decisions for compulsory health care can be made for a period of up to one year at a time. A description of the care and treatment needed must be appended to the application. If the decision concerning the compulsory measures is for more than three months the decision is automatically sent to the Norwegian Board of Health Supervision for evaluation.
The patient or the family carer has the right to appeal. The deadline for the appeal is three weeks after the decision has been made. The appeal is directed to the Health Supervision, although it is sent to the local health authorities for an immediate second evaluation of the decision.
The refusal of life-saving treatment
A dying patient is entitled to refuse life-prolonging treatment. If a dying patient is incapable of communicating his/her wishes regarding treatment, the health care personnel may withdraw health care provided that the patient’s next of kin also consent and that the health care personnel, based on an independent evaluation, find that this also corresponds with the patient’s wishes. Health care personnel must ensure that the patient was given adequate information and understood the consequences of the refusal of treatment for his/her own health. The patient must also have legal capacity (§4-9).
The right to withdraw consent
Consent can be withdrawn at any time (European Commission, 2006).
Consent to the donation of organs and/or human tissue
The Biobank Act of 2003 covers the issue of consent to the donation of human biological materials to biobanks, either for diagnostic and treatment purposes or for research purposes.
For donations intended for diagnostic and treatment purposes from people who do not have the capacity to consent (according to section 4-3 of the Patients’ Rights Act), sections 4-6 to 4-8 of the same act apply. In the case of donations intended for research purposes, articles 4-7 and 4-8 of the Patients’ Rights Act apply. The amended paragraphs regarding the Biobank Act is still not implemented.
Consent to research and clinical trials
In the Act of Health Research, which has not been yet implemented, consent to research and clinical trials is specifically mentioned. Prior to this Act no legislation dealt specifically with consent either to research or to clinical trials.
The Act of Health Research specifies that consent must be voluntary, informative and documented. The regulations of consent are to be issued by the Department of Health. However if the people in the research and trials are incapable of consent, the approval and responsibility for consent is governed by the provisions of the Act of Patients’ Right part 4-3.
Access to information/diagnosis
The right to be informed
Section 3-2 of the Act relating to Patients’ Rights of 1999 states that patients are entitled to have all the information they need to gain an insight into their health condition and any health care provided. This information may be given to the patient’s next of kin if s/he consents or if the circumstances justify this. If the person is over 16 years of age, obviously incapable of safeguarding his or her own interests due to dementia (for example), both the patient and his/her next of kin are entitled to receive this information (section 3-3).
When information is given, health care professionals should ensure that the patient has understood its content and significance. It should be given in a considerate way, bearing in mind the patient’s age, maturity, experience and cultural and linguistic background. It should be noted in the patient’s medical file that s/he has been informed (section 3-5).
Access medical files
Section 5-1 of the Act on the Rights of Patients covers the right of access to medical files. Patients are entitled to access their medical records including enclosures and upon special request to have a copy. They are also entitled to a brief and simple explanation of any medical terms used. Patients may demand that information in their medical file be corrected or erased pursuant to the provisions of sections 42 to 44 of the Health Personnel Act.
Next of kin who are entitled to health-related information are automatically entitled to access the patient’s medical file. However, access to medical records may be refused for the same reasons as access to general information can be refused.
A representative of the patient may access information that has been refused to the patient unless the representative is considered unfit for this task.
The patient’s next of kin are entitled to have access to his/her medical records after his/her death, unless there are specific reasons to refuse such access.
The doctor’s right to withhold information
Information may be withheld if absolutely necessary to prevent endangering the patient’s life or seriously damaging his/her health. It may also be withheld if it is clearly inadvisable to provide such information out of consideration for people who are close to the patient (section 3-2).
The patient’s right to refuse information
A patient’s request not to receive information about his/her health should be respected unless it is necessary in order to prevent harmful effects caused by the health care. This is not mentioned in the legislation but in the guidelines for healthcare. It does not cover side-effects to treatment.
Confidentiality/disclosure of information to other people
According to section 3-6 of the Act on the Rights of Patients of 1999:
Medical and health-related information and other personal information shall be treated in accordance with the current provisions regarding confidentiality. The information shall be treated with caution and respect for the integrity of the person whom the information concerns. The duty of confidentiality ceases to apply to the extent that the person entitled to confidentiality so consents.
Provisions relating to the confidentiality of information can also be found in the Act relating to Health Personnel, the Act on Specialised Health Services and the Act on Personal Health Data Filing Systems and the Processing of Personal Health Data (European Commission, 2006).
Cooperation with carers and their right to information are covered in different laws and regulations.
Cooperation with carers is specifically mentioned in both the regulations on nursing homes (§4-11, 4-12), which include an obligation to ensure that people living in such homes have a better stay, and in the Act on the Rights of Patients of 1999. The Act on the Rights of Patients covers the carer’s right to information and mentions the importance of effective communication strategies, especially in the newly amended paragraph on information and cooperation with carers, so as to provide the best possible medical assistance to patients.
The Act on Special Health Care also specifies the hospital’s duty to give information and education to carers (§3-8). For other services for carers the municipal’s social service, according to the Act of Social services, shall comprise measures to provide respite for persons and families with especially burdensome caring work, and pay to persons with especially burdensome caring work.
Advance directives and health care proxies
Advance directives are not legally binding in Norway but people do nevertheless write them. In fact, there is an organisation called “Right to a worthy death” which offers help, advice and assistance in filling in advance directive forms. Independent witnesses are required. An advance directive may be withdrawn or amended at any time by a person with capacity. However a guideline for decisions regarding prolonging treatment for seriously ill and dying persons is being made and will be issued in 2009.
Meanwhile, §4-9 of the Act on the Rights of Patients states that a dying patient is entitled to object to life-supporting treatment. Health care professionals must however ensure that the patient mentioned is of legal age, and that the patients are given adequate information and have understood the consequences of the refusal of treatment. If the patient is incapable of communicating his/her wishes, the health care personnel may withdraw healthcare provided that the patient’s next of kin so requests and that the health care personnel, on the basis of an independent evaluation, finds that this also corresponds to the patient’s wishes. Presumably such wishes may be recorded in an advance directive.
End-of-life care issues
There is no legislation specifically covering palliative care, but different regulations and guidelines do make general reference to this as a topic of care. The Regulation of Qualitative Care in the Municipality covers the topic in the regulation that the best possible care is to be given at all times, whether at home for the patient or in a nursing home.
Special leave for carers in paid employment (to care for a terminally ill person)
According to current legislation special leave exists for carers in paid employment. It is specified in the Act of Working Environment that carers in paid employment are entitled to special leave to care for a terminally ill person for 20 days (The Act of Working Environment §12 -10). This is not, however, a statutory right. In this period of leave the carer has the right to a nursing allowance according to chapter 9 of the Norwegian Social Insurance Scheme.
The Ministry wants the right for special leave to care for terminally ill person to be a statutory right and a hearing is now underway. The hearing also covers the possibility of extending the period of special leave from 20 to 60 days. In addition, the ministry of health is suggesting that the nursing allowance be increased from 20 days to 60 days. The Ministry of Labour further suggests that entitlement to the allowance should be for three months after a period of prolonged nursing ends due to the death of the care recipient.
Retirement and disability pensioners who are supporting a spouse and/or children under the age of 18 may obtain a means-tested dependant supplement.
The dependant supplement is a supplement to the pension which depends on the person’s income. It is awarded to persons in receipt of pension who support a spouse and/or children and who have a combined income below a certain level.
Special leave for carers in paid employment (to help family members over the age of 18 years with special needs)
Carers have no statutory right to special leave to help their adult relatives in case of need. A hearing took place early in 2009 concerning a proposition on leave of absence for family carers for a period of ten days during a calendar year, to assist their relatives over 18 years of age with simple actions e.g. going to the doctors, dentists etc. These acts are too simple to be considered part of homecare services, but sometimes too difficult for people to manage on their own.
According to the Ministry of Labour, the reason for giving family carers statutory right of leave to help relatives is to increase awareness of the important role that carers play in providing informal care nowadays. If the proposal is adopted, the amendments will fall under the regulations of the Working Environment Act (§12-10).
According to section 233 of the General Civil Penal Code, “any person who causes another person’s death, or who aids and abets thereto, is guilty of homicide and shall be liable to imprisonment for a term of not less than six years.” If the act was committed with premeditation, the term of imprisonment can be for up to 21 years.
Section 236 in the General Civil Penal Code deals with assisted suicide. It states that any person who aids or abets another person to commit suicide shall be liable to the same penalty as for aiding and abetting a homicide. No penalty is imposed if the act does not lead to death or considerable injury to the body or health of the other person.
The punishment may be less severe if the person who killed or assisted in the killing of a terminally ill person was moved by compassion to do so (§235).
Non-assistance to a person in danger
The Norwegian criminal code specifies that when someone does not try to prevent an action which is illegal he or she can be faced with an accusation in virtue of the code relating to murder or manslaughter. If the action was done in ignorance the accusation is made taking into consideration how the situation was in fact understood by the accused.
Murder at the request of the victim
The Norwegian criminal code does not specifically deal with assisted suicide or murder at the request of the victim. However a person who does not try to prevent an action which is illegal can be faced with an accusation in virtue of the code relating to murder or manslaughter. This implies that not trying to stop someone from committing suicide is considered as aiding or abetting a suicide.
Last Updated: mercredi 27 avril 2011