2016: Decision making and legal capacity in dementia
Consent to medical treatment
Portugal signed and ratified the Oviedo Convention on Human Rights and Biomedicine. This means that this convention is part of the Portuguese Law since 01.12.2001.
The Act of the Parliament nº 15/14 of 21.03.2014, consolidating the legislation on the rights and duties of the user of health services, states in its Article 3º, nº 1 that the consent or refusal of provision of health care should be a free and informed decision, unless special provision of the law. And in its Article 7º it is stated that the user of health services has the right to be informed by the provider of health care on their situation, possible treatment alternatives and likely progress. Only if the information on these topics is provided we may say that we have informed consent.
The Act of the Parliament nº 36/98 of 24.07.1998 (The Mental Health Act) at its Article 5º 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.
If the person has no capacity to decide, the above mentioned rights are exercised by his/her legal representative.
For psychosurgical interventions, prior written consent must be obtained and two written statements from psychiatric doctors designated by the National Counselling of Mental Health must be obtained.
Consent is also regulated in the Portuguese Penal Code, mainly in Articles 38º (Consent), 39º (Informed Consent), 156º that states that a health intervention carried out by a health professional without consent is a crime that can be punished by 3 years in prison and 157º that provides that the consent to clinical interventions has to be an informed consent. Otherwise the intervention will be illicit and entail criminal liability.
The Governmental Decree nº 101/2006 of 06.06.2006 that creates the National Integrated Continued Care Network (Rede Nacional de Cuidados Continuados Integrados), that is a network gathering as partners a variety of different institutions, private companies and state services (hospitals, health centres, etc.) with the goal of providing quality health services of continued and palliative care, pays special attention to informed consent and is based on respect to dignity, privacy, information, non-discrimination, physical and moral integrity (article 7º). In principle, no one can be admitted in this care network without giving his/her informed consent fulfilling a standard form. If the person has not the capacity to give informed consent this will be given by the legal representative.
The Norm nº 015/2013, of 03.10.2013 from the Directorate General of Health Ministry, updated in 14.10.2014, on free and informed consent in therapeutical acts, diagnosis and participation on clinical trials states the proceedings to be followed by the public health care professionals, lists the intervention where the informed consent has to be written and provides a standard form. It contains guidelines conceived according to the Oviedo Convention and other national legislation on informed consent.
The right to refuse treatment
According to Article 14º, nº 1 b) of the Act of the Parliament nº 48/90 of 24.08.1990 (“Lei de Bases da Saúde” – The act that contains the main principles and guidelines on the National Health System), the 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 same is stated in Article 3º, nº 2 of the Act of the Parliament nº 15/14 of 21.03.2014, referred above.
The withdrawal of consent is possible at any time. This is covered by Article 38º, nº 2 of the Portuguese Penal Code.
Consent to research
The Act of the Parliament nº 36/98 of 24.07.1998 (The Mental Health Act) in its Article 5º states, in the framework of mental health, that 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
The issue of consent in clinical trials is regulated by The Act of the Parliament nº 21/2014 of 16.04.2014 on the conduct of clinical trials on medicinal products for human use and medical devices. It adopts the Directive 2001/20/EC of the European Parliament and of the Council of 4 April 2001 on the approximation of the laws, regulations and administrative provisions of the Member States relating to the implementation of good clinical practice in the conduct of clinical trials on medicinal products for human use, and partially adopts the Directive 2007/47/EC of the European Parliament and of the Council of 5 September 2007 amending the Council Directive 90/385/EEC on the approximation of the laws of the Member States relating to active implantable medical devices, Council Directive 93/42/EEC concerning medical devices and Directive 98/8/EC concerning the placing of biocidal products on the market.
Article 8º of the Act of the Parliament nº 21/2014 on “incapacitated adults not able to give
informed consent, states in its nº 2 that “inclusion in clinical trials of incapacitated adults who have not given or not refused informed consent before the onset of their incapacity shall be allowed only if: a) – the informed consent of the legal representative has been obtained and the consent must respect the participant presumed will; b) – The person not able to give informed consent has received information according to his/her capacity of understanding regarding the trial, the risks and the benefits; c) – The explicit wish of the person who is capable of forming an opinion has been respected by the investigator;
Article 8º, nº 3 of the same Act states that: “The clinical trial with intervention* in adults incapable of giving informed consent can be conducted only if: a) – nº 2 conditions has been fulfilled; b) – The clinical trial with intervention is essential to validate data obtained in clinical trials on persons able to give informed consent or by other research methods and relates directly to a life threatening or debilitating clinical condition from which the incapacitated adult concerned suffers; c) - The clinical trial with intervention has been conceived to prevent the disease, discomfort, fear, to rehabilitate, and any other foreseeable risk related to the disease and developmental stage; both the risk threshold and the degree of distress shall be specially defined and constantly monitored.
*the clinical trial with intervention is any investigation which would include a change, influence or programming of health care, behavior or knowledge of participants and caregivers in order to discover or verify health effects.
If the person has given her/his informed consent before the onset of the disability, there are no limitations specified in nº2 a), b) and c) or nº 3 of Article 8º of the Act of the Parliament nº 21/2014 of 04.16. This means that: if the participant had made a living will be expressing her/his will to participate in clinical trials or made a health care proxy, the wishes expressed in advance have to be respected in the light of the Act nº25/2012 which regulates the advance directives in Portugal.
Differently is when the informed consent has been provided by the legal representative (a guardian appointed by the court in the framework of an interdiction process) it is necessary to respect the limitations provided in nº 2 b) and c) (study without intervention) and nº 3 (study with intervention) of the same Article 8º.
This means that advance directives (living will or health care proxy may give a very important contribution to research in the field of dementia, allowing to overcome the informed consent barriers.
Since August 2012, according to the Act of the Parliament nº 25/2012 of 16.07.2012, it is possible, in Portugal, to make a binding advance directive either in the form of a living will or in a form of a health care proxy. Advance Directives, in Portugal, may include: artificial support of the vital functions, futil, unuseful or unmeasured treatments (basic support of life, artificial feeding or hidratation, experimental treatments), adequate palliative care and permission or refusal to participate in research or clinical trials.
The advance directives have to respect the law and the good practices and may not determine non-natural or avoidable death.
The Portuguese Law describes the living will as a written document that can be freely voided, at any time, by his/her author - a capable adult – who expresses, in advance, his/her free and informed will, in what concerns health care in a possible future situation of incapacity.
And describes the health care proxy as a written document through which, voluntarily and freely, representing powers, on health issues, are given to someone to use them in a future situation of lack of capacity.
The Health Ministry created, in 2014, the Living Will National Registration and the Living Will Form. This registration is completely free of charge and people may follow the official form (template) or write a different advance directive.
Advance Directives may be revoked at any time and have to be renewed every five years while the person remains capable.
Issues surrounding the loss of legal capacity
In Portugal, an individual who lacks mental capacity may be declared either subject to interdiction or incapacitation according to the degree of incompetence. If interdiction is granted, the subject will be considered as incompetent to make any personal, health, property or financial decision.
In Portugal interdiction and incapacitation, are regulated in articles 138º - 156º of the Civil Code. These articles have exactly the same content that they had in 1966, when the Portuguese Civil Code came into force.
This means that we have a completely patrimonialist and paternalist legal framework.
The legal process is very slow and expensive and there is significant lack of awareness on the importance of appointing a guardian that will have the duty of promoting the rights of the person with incapacity.
There are no professional guardians and no possibility of choosing a guardian in advance when the person is still capable.
Capacity is seen as an all or nothing phenomenon and not assessed according to the person´s concrete needs and with the different categories of acts (make a will, drive, choose the place to live, take financial or property decisions).
Article 138º of the Civil Code states that if a person is suffering from a mental disorder (or is deaf, dumb or blind), which makes it impossible for him/her to be held responsible for people or property, s/ he can be prohibited from exercising his/her rights (i.e. subject to interdiction).
According to Article 141º of the Civil Code, the interdiction can be requested by the spouse, by the guardian (a minor who has no parents can have a guardian) or the trustee (if someone was subjected to incapacitation, and the degree of the incompetence increases, the trustee can request the interdiction), by anyone in the family that can be an inheritor (“parente sucessível” – not necessarily a descendant; it can be a sibling, who, according to the Portuguese law, can inherit) and by the Public Attorney.
If a person is suffering from a mental disorder which is not serious enough to warrant interdiction, but s/he is proved to be incapable of managing his/her assets, s/he may be declared incapacitated in accordance with Article 152º of the Civil Code. Before a request is made to restrict a person’s legal competence, a social, medical and psychological study should be carried out (Guimaraes, 2008) in order to:
- establish the mental and physical state of health of the person;
- identify his/her social situation, income and family support; and
- define the probable social and psychological impact of the proposed measure.
Note that this social, medical and psychological evaluation is not mandatory but it is a good practice and will facilitate the process at the court.
Currently, only if someone contest (the Public Attorney, for instance) it is mandatory that the person who is to be declared incompetent (interdiction or incapacitation) goes to court in order to be asked by the judge about this kind of questions: “what is your name, what time is it, what can you buy with EUR 20, where are we?”. When no one contests a clinical evaluation made by an independent expert named by the court is enough. The court decision is based on the expert report.
The conditions for appointing a guardian
A trustee is appointed for people who have been declared incapacitated according to Article 152º and a guardian is appointed for people who are subject to interdiction according to Article 138º According to Article 145º the guardian (“tutor”) is the person who represents (acts in the name and the interest of the person declared interdicted. The person whose incapacity has been declared is, according to article 153º, assisted by the trustee (“curador”) which means that the person cannot sell or donate his/her properties without the approval of the trustee.
How guardianship is arranged
The legal process is extensive and slow and for this reason, a large number of people with dementia are taken care of by their families and carers who act in good faith, but whose decisions taken on behalf of the person with dementia are not legally valid. Families and professionals do not have enough information on the legal procedures and interdiction is looked upon as a social punishment to Alzheimer patients (Guimaraes, 2008).
Provisions for appointing a guardian are contained in several Articles of the Civil Code. Article 142º of the Civil Code permits the Court at any time in the proceedings to appoint a temporary guardian to represent the party subject to interdiction in cases where delay could be detrimental to the wellbeing of the latter. One such case would be where there was an urgent need to provide for this person or take care of his/her property.
The choice of guardian
According to Article 143º a guardian can be appointed for an adult who is subject to interdiction and should be assigned in the following order of priority:
- The spouse unless separated or legally unable to hold the position for another reason;
- The person appointed by the parents in a will or in a written document officially recognized (it occurs with minors who are incapable);
- One of the parents;
- The eldest child and then the following children.
If, however, it is not possible for the above to take on the duties of guardian, it is the responsibility of the Court to appoint an alternative having listened to the views of the family.
It is not a simple matter of choice as to whether the spouse or children accept responsibility for guardianship in that they must be excused in order not to do it. The person’s descendants may be excused from further duty at their request on the completion of five years, provided that there are other descendants who are capable and willing to take on the duties. If the person has been declared incapacitated, a trustee may be appointed.
As in Portugal there are no professional guardians, people with incapacity without family, or whose family has no emotional or other conditions to assume the guardianship, may live without anyone to act on his/her behalf, this means without effective legal protection and in a completely vulnerable situation.
The duties and responsibilities of guardians
The guardian is responsible for taking special care of the health of the person subject to interdiction and to administrate his/her personal, property and financial affairs, and may, to this aim, sell or transfer property, having obtained the necessary court authorisation (Article 145º).
The role of the trustee, on the other hand, is to assist the incapacitated person in transactions. This means that the incapacitated person is not allowed to sell or donate his/her property without the permission of the trustee.
How the financial affairs of the ward are handled?
According to Article 154º, the responsibility for the administration of the assets of the incapacitated person may be given by the court either wholly or in part to the trustee. If this is the case, a family council is set up and a voting member designated. This person functions as a sub-trustee and exercises the function of guardian.
Measures to protect the ward from misuse of power
Article 153º, nº 2 states that if the trustee does not authorise a disposal act (e.g. the sale of property) the Court can decide instead of the trustee. Article 154º, nº 3 states that the trustee has to justify the administration of the assets of the person with incapacity.
Payment and liability of guardians
In Portugal there are no professional guardians. They are usually family members. So they don’t receive any payment and can only be reimbursed for their expenses. The payment of a guardian is only foreseen for minors.
The guardians are responsible for the administration they do on behalf of and according to the best interests of the person declared incapable. This means that they have to justify every expense and administrative act.
The Public attorney and the family council have the power to supervise the guardian’s activities and they can ask the judge to make him/her justify his/her actions. They may also demand the dismissal of the guardian if s/he is not acting according to his/her duties.
Duration of guardianship
There is no time limitation on the appointment of guardians and tutors.
3.2.2. Powers of Attorney
According to the Act of the Parliament nº 25/2012 of 16.07.2012 on advance directives it is possible to write a binding living will or a health care proxy.
A health care proxy is a written document through which, voluntarily and freely, representing powers, on health issues, are given to someone to use them in a future situation of lack of capacity.
Capacity In Specific Domains
A person who has been declared interdicted or incapable has no capacity to marry. And if, in spite of the incapacity, the marriage is celebrated, it is null and this nullity can be declared at any time.
According to Article 1601º of the Civil Code, a marriage may be opposed if it is to a person who has been either diagnosed insane (even if s/he is in a period of lucidity) or declared subject to interdiction or incapacitation due to a mental disorder. The invalidation of a marriage contracted by someone who is suffering from dementia can be requested by any direct relative of the couple, heirs or the Public Attorney. The decision on this issue is made by the Family Court (Guimaraes, 2008).
A person who has been declared interdicted has no voting capacity but a person who has been declared incapacitated can vote.
Any legal transaction carried out by a person who has been subjected to interdiction may be annulled (Article 148º). Even legal transactions carried out during the proceedings for interdiction may be annulled, although this is only effective from the date that the sentence is passed and is dependent on proof that the transaction caused harm to the person subject to interdiction.
A person who has been subjected to interdiction as a result of a mental disorder does not have the capacity to make a will (Article 2189º of the Civil Code). A person subject to either interdiction or incapacitation cannot be named as the executor of a will (Article 2321º of the Civil Code).
Nowadays, notaries are increasingly asking for the expertise of 2 psychiatrists to assess the capacity of people over 65 and/or who have a psychiatric disorder. This is not required by law but is done as a precautionary measure to avoid people contesting wills, e.g. relatives who were perhaps not or not sufficiently included in the will (Firmino et al. 2008).
According to Article 139º of the Civil Code, a person who has been declared interdicted is considered as a minor. As mentioned above (Articles 148º and 149º), the acts of people who have been declared interdicted can be annulled.
According to Article 488º, a person who is not capable of understanding at the moment of acting is not responsible for any damage s/he may cause (unless the person caused the incapacity, e.g. by getting drunk).
Incapacity is presumed in the case of people who have been declared interdicted. In other cases, incapacity has to be proved.
In some special cases, as foreseen in Article 489º, in accordance with the equity principle, an incapable person may be condemned to pay damages they had caused (if there is no other way to compensate the victim but only if the incapable person has the financial means to pay without prejudice to his/her basic needs).
The tutor or other person responsible by law or contract to take care of the incapable person may be held responsible for the damages caused by him/her (Article 490º).
According to Article 20º of the Portuguese Penal Code, the person who, due to a psychological disorder, is not able to understand that s/he is acting against the law, is not criminally responsible.
The Portuguese Civil Code previews the incapacitation and the interdiction and the appointment of a curator to assist the person declared, by court, incapacitated or a tutor to represent the person declared, by court, interdicted, respectively.
The tutor is always appointed by the judge, in principle, according to this order of priority: the spouse, the elderly child. Only an individual person may be appointed as a guardian and never a foundation or an association. There are no professional guardians.
Recent Developments (Legislation not yet In Force ) related to legal capacity
At the moment the Bill nº 61/XIII is at the Commission for Constitutional Affairs, Rights, Freedoms and Guarantees where its new discussion in the details at the Parliament is being prepared. This Bill includes some important changes in the Portugues Civil Code (more exactly it proposes the 66th Change of the Civil Code, approved by the Act of the Government nº 47 344, of 25.11. 1966) Its aim is modifying the incapacity legal framework (Articles 138º - 156º, referred above) and adapting several separate legislations to the new framework.
The chair of this commission invited Alzheimer Portugal to give its contribution.
Alzheimer Portugal gave its written opinion, highlighting the following points:
1. Changing the current legislation on guardianship is an old ambition of our association;
2. Although we recommended it in the framework of a National Dementia Plan and not as a Strategy for the Elderly, Alzheimer Portugal welcomes some important and really innovative measures, such as:
I – Interdiction will be, no more a declaration of complete incapacity but will be:
declared according to the nature and degree of the incapacity;
II - The court decision declaring the interdiction will expressly declare the acts or category of acts that the person is considered capable or incapable of doing: The right to vote; The right to get married; The right to make a will; The right to donate; The right to live in cohabitation; The right to drive, etc.
In principle, personal rights may be performed by the person itself, with the guardian´s support, if needed;
The person may require his/her self-interdiction;
The member of the cohabitation has legitimacy to require his/her partner interdiction;
The nursing home, or any other facility, where the person is living has the duty to inform the Public Attorney of the incapacity of its client;
Not only an individual may be a guardian but also an organization created to represent or protect people with incapacity legal rights;
The guardian has the duty to keep the person with incapacity informed and respect his/her remaining autonomy.
The Bill proposes this new possibility of planning in advance care and other personal, property or financial affairs, that is really innovative to Portugal:
The person still capable appoints a reliable person to act on his/her behalf in an eventual future incapacity situation;
When the person becomes incapable and the mandatary needs to start acting on the person´s behalf, he/she has to communicate it to the Court. Only after this communication is conducted that the exercise of the mandate is legal.
The same duty of communicating will exist from the person who, without any mandate or authorization is acting on behalf of the person, for instance managing the person´s daily life and affairs.
These Changes are in syntony with the United Nations Convention on the Rights of Persons with Disabilities and with the Recommendation CM/Rec (2014)2 of the Committee of Ministers to Member States on the Promotion of Human Rights of Older Persons;
Last Updated: Friday 10 February 2017