Healthcare and decision-making in dementia
Consent to medical treatment
According to Article 156ª of the Penal Code, a health intervention carried out without consent is a crime that can be punished by 3 years’ imprisonment.
Clause 5 of the Mental Health Act No. 36/98 of 1998 on the rights and duties of the user covers the issue of consent. The following provisions are included:
- Users of mental health services are allowed to decide to receive or refuse any diagnostic and therapeutic intervention which they are proposed, except in the case of compulsory internment or in emergency cases where non-intervention would create proven risks to the person concerned or any other person;
- For electroconvulsive therapy prior written consent must be obtained;
- Within the terms of the legislation in force, patients may accept or refuse to take part in investigations, clinical tests or training activities.
The above rights extend to the person's legal representative in cases of incapacity.
For psychosurgical interventions, prior written consent must be obtained and two written statements from psychiatric doctors designated by the Conselho Nacional de Saude Mental must be obtained.
Consent in case of emergency
In emergency cases the health professional can act without consent. This is covered by article 156 §2 a) of the Criminal Code.
The right to refuse treatment
According to article 14, 1 b) of the Basic Health Law 48/90 of 24 August, a person has the right to refuse treatment. If the person is declared incapable the guardian or the tutor has the right to refuse on the person’s behalf.
The right to withdraw consent
The withdrawal of consent is possible at any time. This is covered by article 38 §2 of the Criminal Code.
Consent to non-conventional treatment
The principles and rules are the same as for conventional treatment. Consent has to be obtained.
Consent to the donation of organs and/or human tissue
The donation of organs is foreseen in Law 12/93 of 22.04 amended by the Law 22/07 of 29.06 (please see attached).
Insofar as donations are concerned, consent is always necessary when the potential donor is alive. In the case of people with incapacity only the legal representative or the court may give consent. Donation is never possible (for people with incapacity) for organs that cannot be regenerated.
Insofar as post-mortem donations are concerned, in Portugal everyone is presumed to be a donator. However, there is a National Register of non donators. If someone does not want to donate his/her organs, or some of them, this has to be registered there.
Consent to research
The Law on Mental Health No. 36/98 of 24 July 1998 contains a clause which covers the rights and duties of the people who have recourse to mental health care (not only those who have been interned). According to clause 5, people have the right to accept or refuse to take part in investigations, clinical tests or training activities. However, if it is judged that a person is incapable of evaluating the meaning or extent of consent to the above, the decision can be taken by his/her legal representative.
Consent to clinical trials
Law no. 46/2004, of 19 August 2004 adopted Directive 2001/20/CE and repealed the Decree-Law no. 97/94 dealing with participation in clinical trials. Under article 6 (1) (d), informed consent is required and should be written, dated and signed. It should be given freely by the participant after having been duly informed of the nature, significance, implications and risks of the trial. If the participant is not capable of giving his/her consent a legal representative should give it (article 7 - minor/article 8 - mental health).
In Portugal, the relevant clauses of the European Convention on Human Rights and Biomedicine Rights are also applicable.
Advance directives are not recognised in Portugal .
Access to information/diagnosis
The right to be informed
According to article 157 of the Penal Code consent is only valid if the person is duly informed about the diagnosis, and the characteristics and risks of the intervention.
The new Code of Medical Ethics (Regulamento nº 14/2009 of 13/01/2009) , which replaced the 1985 Code of Medical Ethics, addresses the issue of informing the patient of his/her state of health. According to article 50, the diagnosis and prognosis should be revealed to the patient so as to respect his/her dignity and autonomy.
The right to information is also covered by the Law on Mental Health which grants the patient the right to be informed, in an adequate fashion, of his/her rights, as well as the plan for therapy being proposed and the predicted effects (clause 5). The relevant articles of the European Convention on Human Rights and Biomedicine Rights are also applicable.
Access medical files
It is stated in article 35 of the Portuguese Constitution that all citizens have the right to access any computerized data relating to them and to be informed of how the data is to be used. Not all medical files are computerised. However, a person has the right to access any data concerning him/herself, irrespective of whether it is computerised or not.
Law n° 12/2005 of 26 January 2005 concerning personal genetic information and health information grants a person the right to consult his/her complete medical records (unless there are exception circumstances whereby doing so would be clearly harmful to him/her). Article 2 of this law also grants a person the right to have his/her medical records made available to other specified people (Nys et al., 2008).
The doctor’s right to withhold information
Article 50º of the new Code of Medical Ethics does not exactly state that the doctor may withhold the diagnosis and prognoses under certain conditions. However, it states that the doctor has to be very careful when communicating them and to balance the damage the information may cause the person. This is also covered by article 157 (§3B) of the Criminal Code.
The patient’s right to refuse information
The right not to know is not covered in Portuguese health law or Law n° 12/2005 of 26 January 2005 concerning personal genetic information and health information (Nys et al., 2008). However, article 50º, nº 3 of the new Code of Medical Ethics covers the right to refuse information.
Moreover, according to the principle of the fundamental right of self determination, a person has the right to refuse information and this right must be respected by his/her doctor.
Confidentiality/disclosure of information to other people
Article 50 of the new Code of Medical Ethics of 2009 states that diagnoses and prognoses should only be revealed to third parties (e.g. relatives) with the patient’s permission unless the latter is cognitively impaired.
According to article 195 of the Portuguese Criminal Code, a person may be imprisoned for up to one year or fined if, without prior consent, s/he discloses secret information obtained through his/her civil state, office, job or activities.
Personnel responsible for the processing of genetic and health-related information are obliged under Law n° 12/2005 of 26 January 2005 to take the necessary steps to protect the confidentiality of such information.
End-of-life care and issues
There is a National Programme on Palliative Care which was approved by a ministerial decision (by the Minister of Health) on 15/06/2004.
According to this document, palliative care is based on the fundamental conception that no one can make decisions about the life of a human being, which means that nothing shall be done to anticipate or delay death and that consequently euthanasia, assisted suicide and diagnostic or therapeutic futility are rejected (1. Principle g).
In 2006, the National Network of Integrated Continuous Care (REDE NACIONAL DE CUIDADOS CONTINUADOS INTEGRADOS – RNCCI) was approved. Its aim is to provide continuous care through complementary levels of integrated care (convalescence, rehabilitative middle and long-term care) as well as palliative care for the elderly and for those living in a situation of dependency. (http://www.rncci.min-saude.pt/index.aspx?p=MenuPage&MenuId=7).
Special leave for carers in paid employment (to care for terminally ill person)
There is no specific special leave to care for terminally ill person.
However, article 252º of the Labour Code states that employees are entitled to 15 days per year leave to take care of their spouse or a person living in civil union (de facto union) or in the same home sharing expenses (common economy) or a direct or in-law member of the family. There must be a need for urgent and unavoidable care.
In case of a handicapped person or someone with a chronicle disease the leave can be for up to 30 days per year.
Passive euthanasia, which involves the withholding of life-preserving measures, is illegal and could be considered an “omission of assistance” (please see relevant section below) by the physician or homicide, depending of the facts.
Under article 131 of the Penal Code, direct active euthanasia is a homicide, even if it is carried out in order to hasten a painful death.
Article 135 of the Penal Code: Incitement and assistance to commit suicide
1 Whoever incites another to commit suicide or assists a person in doing so, will receive a prison sentence of up to 3 years, if the suicide was attempted or accomplished.
2 If the person incited or assisted is less than 16 years old or, for any reason, has his/her capacity or determination sensibly diminished, will receive a prison sentence of between 1 and 5 years.
Non-assistance to a person in danger
Article 200 of the Penal Code: Omission of Assistance
1-Whoever, in case of a serious need, namely caused by disaster, accident, public disaster or a state of common danger, which endangers life, physical integrity or freedom of another person, fails to provide assistance necessary to the removal of hazard, either by personal action or by promoting rescue, will receive a prison sentence up to one year or a penalty of fine of up to 120 days.
Murder at the request of the victim
Article 134 of the Penal Code: Murder at the request of the victim:
1. Whoever kills another person determined by a real, instant and expressed request that he/she has made, will receive a prison sentence of up to 3 years.
The crime of simple murder is the fundamental legal type of murder in Portugal. However, other kinds of murder exist, such as qualified murder, privileged murder, murder at the request of the victim, incitement and assistance to commit suicide, infanticide and negligent homicide (some of which have been mentioned above).
Article 131 of the Penal Code: Murder
Whoever kills another person will receive a prison sentence of between 8 and 16 years.
Conselho nacional de ética para as ciências da vida (1993), Opinion on the clinical evaluation of drugs/Avis sur les essais cliniques de medicaments,
Firmino H, Silva Carvalho P and Cerejeira J (2008), Practice of competence assessment in dementia: Portugal. Ed. Gabriela Stoppe (2008), Competence assessment in dementia, Springer Wien New York.
Nys H. et al. (2008), Patients Rights in the EUR – Portugal , European Ethical-Legal Papers N°13, Leuven
Information from the "Conselho nacional de ética para as ciências da vida" on interdiction and incapacity
Last Updated: mercredi 27 avril 2011