Healthcare and decision-making in dementia
Consent to medical treatment
There is no patient law on federal level, but article 10 of the Swiss Constitution covers (amongst other things) the right to physical integrity. Article 28 of the Civil Code is also relevant to the issue of consent. It states that a person who suffers unlawful injury to his/her person can take the affair to court in order to obtain protection.
In several cantons, there are health laws covering the issue of consent but often they are only applicable in public establishments.
Article 1 of the guidelines of the Swiss Academy of Medical Sciences (SAMS) on the self-determination of patients states that it is forbidden to administer any medical act against the expressed will of a patient capable of discernment even if the patient’s wishes do not seem to be in his/her best interest. Specific requests for treatment or care should only be accepted if they are in line with current medical practice. It is also stated that minors and people who are under tutorship may be capable of discernment when it comes to consenting to treatment.
Consent for people unable to express their will
If a person has not made an advance directive or appointed a healthcare proxy (known as a therapeutic representative), relatives might be consulted. At the moment, there are still different solutions in different cantons but with the new Law on the Protection of Adults (the “Erwachsenenschutzrecht”), which was adopted by the Parliament in December 2008 (but is not yet in force), there will be uniform rules.
Article 377, for example, stipulates that for treatment that was not determined in an advance directive, the doctor must draw up a treatment plan with the person authorized to represent the patient in medical matters. That person must be provided with all information pertinent to the proposed treatment. The doctor must nevertheless involve the patient in the decision-making process to the extent this is possible.
In article 378 the people who are authorized to consent or refuse treatment on behalf of the person with incapacity are listed in order of priority which is as follows:
- The person designated in an advance directive or in an order/mandate linked to incapacity (mandate pour cause d’inaptitude)
- The guardian (curateur) who has authorization to represent the person in medical matters
- The spouse or registered partner if he/she is living with the person or provides regular personal assistance to him/her
- The person’s descendents if they provide regular personal assistance to him/her
- The person’s father and mother if they provide regular personal assistance to him/her
- The person’s brothers and sisters if they provide regular personal assistance to him/her
In the case of several representatives, the doctor can, in good faith, presume that each acts with the consent of the others. In the absence of an advance directive, representatives must decide in accordance with the person’s presumed wishes and interests.
The guidelines on the medical treatment and care of persons with disability (2008) of the Swiss Academy of Medical Sciences (SAMS) distinguish between patients who have never had capacity and those who used to have capacity (articles 4.1 and 4.2). With regard to the latter, it is stated that their presumed wishes must be sought. This should include trying to find out if they ever expressed their wishes in writing (e.g. in an advance directive) and taking into consideration statements made by a person who was designated by them and granted authorisation to make medical decisions on their behalf (a therapeutic representative). Healthcare staff should also try to determine whether a patient made his/her wishes known in another way, through relatives for example. In principle, any presumed wishes of the patient expressed in any of the above-mentioned ways take precedence over any decision to the contrary made by a legal representative.
Consent in case of emergency
According to article 379 of the new Law on the Protection of Adults, in emergency situations, the doctor can treat patients who are incapable of discernment on the basis of their presumed will and best interests.
Special kinds of consent
At federal level, there are not yet laws specifically referring to consent to innovative treatment, participation in clinical teaching or the use of bodily substances. However, there will be a new article in the Constitution and a new law concerning research on human beings. This will determine under which circumstances people incapable of discernment can participate in research. However, nobody can do anything against the presumed will of a person (except in case of emergency) as this would be considered as bodily assault and would be punishable. The rules of the Academy of Doctors are applicable.
The right to refuse treatment
One possibility to refuse treatment is through an advance directive. Generally speaking, the patient’s right to self-determination also covers the right to refuse treatment.
People who are allowed to decide on behalf of the patient (see 18.104.22.168. above) also have the right to refuse treatment on his/her behalf.
Consent to the donation of organs and/or human tissue
The Federal Law on the Transplantation of Organs, Tissue and Cells of 8 October 2004 (Section 3, article 12) permits the donation of organs, tissue or cells from a living person on the following conditions:
- the donor is an adult and capable of discernment;
- he/she has given his/her informed consent in writing;
- the donation would not result in any serious risk to his/her life or health;
- the receiver cannot be treated by another therapeutic means of comparable efficacy.
However, it is stipulated in article 13 that a minor or incapable adult cannot donate tissue, organs or cells although in exceptional circumstances regenerative tissue or cells can be donated by a minor or incapable adult subject to the fulfilment of certain conditions. For incapable adults, the conditions which must be fulfilled, in addition to those stated in article 12, are as follows:
- the donation only represents a minimum risk or burden to the donor;
- no other capable adult donor is available;
- the receiver is the father, mother, a child, a brother or a sister of the donor;
- the donation could save the life of the receiver;
- the legal representative has given his/her informed consent in writing;
- there is no indication which might suggest that the incapable adult is opposed to the donation;
- an independent authority has given its authorisation.
Every effort must be made to inform incapable adult donors in the information process with the aim of obtaining their informed consent.
The above law only relates to donation for transplantation not for research. Donation for research will be covered by the Law on Research on Human Beings which will contain special rules for people who are incapable of discernment.
Consent to clinical trials
In Switzerland, there are specific regulations at federal level regulating the clinical trial of medicinal products. An Ethics Commission examines each project and the Swiss agency for the authorisation and supervision of therapeutic products (Swissmedic) is also involved.
Consent to research
There is as yet no law on clinical research at federal level. Research involving humans is mainly covered by cantonal law and where laws do exist, their scope, content and precision vary considerably from one canton to the next.
In September 2009, however, the parliament adopted a new article of the constitution concerning research on humans (“l'article constitutionnel relatif à la recherche sur l'être humain”). The administration is preparing the corresponding law (“loi fédérale relative à la recherche sur l’être humain (LRH) “).
According to article 118b of that law, research cannot be carried out on a person who has not given informed consent (or whose legally appointed representative has not given consent). Certain legal exceptions to the need for informed consent are possible but a refusal to take part must always be respected. The risks and burden of the study should not be disproportionate to the usefulness of the project. People with incapacity should only be involved in studies if it is not possible to use people with capacity instead. If the study is unlikely to bring personal benefit to people lacking capacity who are taking part, the risk and burden must be minimal.
The Swiss Alzheimer Association took part in the Consultation. As a result of the consultation process, the clause on forced research on people incapable of discernment was dropped. Switzerland seems to be following the rules of the Convention on Human Rights and Biomedicine of the Council of Europe.
The legal status of advance directives in Switzerland
In December 2008 the Swiss Parliament adopted the new Law on the Protection of Adults (“Erwachsenenschutzrecht” or “loi sur la protection de l’adulte”). However, this law is not yet in force (and perhaps will not be before 2013) which means that legally there is not yet a specific law relating to advance directives at federal level. However, in a lot of cantons (e.g. Argovia, Appenzell, Berne, Outer Rhodes, Geneva, Lucerne, Valais and Zurich), advance directives are covered by health care legislation.
The new law at federal level (i.e. the Law on the Protection of Adults) states that everyone can make an advance directive concerning the type of care that they would or would not like to receive in specific situations when they are no longer able to express their wishes.
In the same way, everyone can designate a person who will be responsible for making decisions on their behalf concerning the choice of care to be provided in these same circumstances.
Advance directives must be respected as long as they correspond to the current situation and there is no indication that the patient’s will has changed.
Advance directives are also governed by laws relating to the protection of privacy and personal liberty (article 27/28 of the Swiss Civil Code and article 10 of the Constitution).
Conditions surrounding the writing, validity and registering of an advance directive
It is not necessary to have witnesses or to involve officials when writing an advance directive. The document must however be in writing or print and must be signed. Several organisations (e.g. Pro Senectute) have ready-made advance directives that people can use. Alzheimer Switzerland published in December 2007 an information sheet on this theme entitled “directives anticipées et représentant thérapeutique”.
Capacity is presumed but in case of doubt, experts are called in to try to determine whether the author of the advance directive had the necessary capacity at the time the document was produced.
It is specified in the Law on the Protection of Adults that an advance directive must be sufficiently precise, correspond to the author’s presumed wishes and be an expression of the author’s free will. In addition, the appointment of a health care proxy should be publicly certified and the document deposited at an official organisation. There is no time limit on the duration of advance directives.
What an advance directive can cover
There are no conditions regarding the content of advance directives. They cannot, however, contain wishes or instructions that are against the law e.g. for active euthanasia. Consent or refusal of life-supporting and/or life-saving treatment is possible.
Article 370 of the Law on the Protection of Adults allows for a competent adult to appoint in writing one or more people who in the event of his/her incapacity can consent to medical treatment on his/her behalf (i.e. a health care proxy).
Article 373 states that a person can write an advance directive covering the acceptance or refusal of medical treatment.
Obligation to comply with instructions contained in an advance directive
Even though advance directives currently have no legal basis at federal level, it is generally accepted that doctors should comply with instructions/wishes contained in an advance directive provided that the conditions for making a valid advance directive have been fulfilled.
According to article 372 of the Law on the Protection of Adults:
1 When a doctor is treating a person who is incapable of discernment and does not know whether s/he has an advance directive, s/he must find out if one exists by consulting the patient’s health insurance card. This does not apply in case of emergency.
2 S/he must respect the patient’s advance directive unless it violates the law, or if there are serious doubts as to whether it represents the patient’s free will or whether it corresponds to the his/her presumed wishes in the given situation.
3 S/he must record in the patient’s medical file any reasons for failing to respect the advance directive.
Article 373-1 further states that
Any relative of the patient can inform in writing the guardianship authority of the patient that:
1. the advance directive has not been respected;
2. the patient’s interests are or risk being compromised;
3. the advance directive does not represent the free will of the patient.
Doctors are not obliged to comply with an advance directive if there are grounds to believe that the document no longer corresponds to the patient’s wishes. This is difficult to determine once a person has lost capacity.
Amending, renewing and cancelling advance directives
An advance directive can be amended, renewed or cancelled at any time provided that the author still has the capacity of discernment.
Guidelines of the SAMS
The Swiss Academy of Medical Sciences (SAMS) has issued new guidelines on advance directives. For further details about these guidelines, please refer to: http://www.samw.ch/fr/Ethique/Directives/actualite.html
Access to information/diagnosis
The right to be informed
The patient has the right to be informed in a clear and appropriate manner about his/her state of health, about examinations and treatments that could be envisaged, about the consequences and possible risks that they may involve, about the prognosis and about the financial aspects of the treatment. If s/he is incapable of discernment, his/her legal or therapeutic representative or relatives must be informed. At federal level, there is no “direct legislation”, but the basis for this right is article 28 of the Civil Code (protection of the person). There are also cantonal laws (e.g. Berne, Vaud, Zurich).
Access to medical files
The patient has the right to consult his/her medical file and to obtain explanations about the meaning of the information. Healthcare professionals can only withhold information in the form of personal notes or about other people. However, if the healthcare professional thinks that consulting the medical file could have serious consequences for the patient, s/he can request that the consultation take place in his/her presence or in the presence of another healthcare professional chosen by the patient.
The right to designate another person to be informed on one’s behalf
Article 370 of the Law on the Protection of Adults allows for a competent adult to appoint in writing one or more people who in the event of his/her incapacity can consent to medical treatment on his/her behalf (i.e. a health care proxy). However, this has not yet come into force.
If somebody designates a trusted person or healthcare representative (“une personne de confiance ou représentant thérapeutique”), this person must be informed.
The doctor’s right to withhold information
The doctor is entitled to limit or even withhold information in either of the following cases:
- If the patient clearly refuses to be informed e.g. if s/he does not want to know if s/he has an incurable illness. In such cases, the refusal of information does not imply a refusal of care.
- In emergencies, the information can be given later.
There is no federal law governing the right to withhold information but there are some cantonal laws e.g. in Berne and there is the jurisprudence of the Swiss Federal Court (federal tribunal) which is very important.
The patient’s right to refuse information
The patient’s right to refuse information or not be informed is based on his/her right to self-determination (based on articles 27 and 28 of the Civil Code).
Confidentiality/disclosure of information to other people
The Federal Law on the Protection of Data (LPD) of 19 June 1992, which came into force on 1 July 1993, covers all information relating to a specific person and the handling of such information by private persons and federal organisations. Private persons should be understood as including not only independent doctors but also psychologists, psychotherapists, personnel in private clinics, insurance agents and health insurance companies. Insurance agents and health insurance companies which are active in the domain of the obligatory health insurance are classed as federal organisations.
Certain information is considered sensitive and requires special protection. This includes medical notes about the progress of treatment, descriptions of symptoms, diagnoses, prescriptions, reactions, results of analyses or X-rays.
End-of-life care and issues
There is no law on palliative care but the Swiss Academy of Medical Sciences has produced guidelines. An English version of these guidelines can be found at: www.samw.ch/docs/Richtlinien/e_RL_PallCareDef23_05_06.pdf
Awareness of this problem has been increasing and new surveys about the availability of palliative care in Switzerland have been carried out.
Special leave for carers in paid employment (to care for a terminally ill person)
Legislation is very restrictive and carers are dependent on the generosity of their employer. A study about this problem, entitled “Work and Care”, has been carried out. Alzheimer Switzerland participated at this study.
Administering medication (e.g. morphine) to relieve suffering which may also have the secondary effect of shortening a patient’s life (sometimes known as the double effect) is generally regarded as permissible. This is reflected in the guidelines of the Swiss Academy of Medical Sciences (according to the Federal Office of Justice, 2006).
There are no specific legal provisions governing passive euthanasia e.g. the renunciation or discontinuation of life-prolonging measures. This is also mentioned in the guidelines of the Swiss Academy of Medical Sciences (SAMS guidelines).
Assisted suicide involves enabling a person (who wishes to commit suicide) to obtain a lethal substance, which that person then takes themselves without any external assistance. Contrary to popular belief, assisted suicide is punishable under Swiss law but only if the person who is assisting is motivated by self-serving ends. If so, according to Article 115 of the Swiss Penal Code, that person could be punished by strict-regime imprisonment for up to five years, or by ordinary imprisonment.
Certain organisations, such as EXIT, offer assistance to people wishing to commit suicide within the confines of the law. In order to avoid prosecution, they must be able to prove that they did not have any self-service motive. It is stipulated in the SAMS guidelines that assisted suicide is not a part of a physician’s activity.
The above information was taken from the website of the Federal Office of Justice (2006).
Non-assistance to a person in danger
Non-assistance to a person in danger is dealt with in article 127 of the Penal Code. It states that a person who does not provide assistance to a person who is dependent on him/her and who is not capable of protecting him/herself, may be punished by up to 5 years’ imprisonment or a fine. The same applies if someone prevents another person from providing such assistance.
Murder and murder at the request of the victim
The deliberate killing by a doctor or third party of another person (e.g. by an injection resulting in death) would be punishable under article 111 (murder), article 114 (mercy killing on request) or article 113 (manslaughter) of the Swiss Penal Code.
Federal Office of Justice website – accessed on 15 March 2007: http://www.ofj.admin.ch/bj/en/home/themen/gesellschaft/gesetzgebung/sterbehilfe/formen_der_sterbehilfe.html
Federal Office of Health website: http://www.bag.admin.ch/themen/medizin/index.html?lang=fr
Swiss Academy of Medical Sciences, Guidelines on palliative care. English version can be found at: www.samw.ch/docs/Richtlinien/e_RL_PallCareDef23_05_06.pdf
Last Updated: mercredi 27 avril 2011