In this piece of work, we present a proposal to create a living will record in Europe that will allow people to have the same rights wherever they are.

Therefore, this article will be studied from the bioethics and health law theory

Díez Rodríguez, José Ramón

Marcos del Cano, Ana Maria

English

Hochschulschriftenserver - Universität Frankfurt am Main

    25th IVR World Congress  LAW SCIENCE AND TECHNOLOGY  Frankfurt am Main  15–20 August 2011  Paper Series No. 073 / 2012 Series C Bioethics / Medicine / Technology / Environment   Ana Maria Marcos del Cano / José Ramón Díez Rodríguez  Bioethics and Health Law: the Living Will. Proposal to Create a Living Will Record in Europe     URN: urn:nbn:de:hebis:30:3-249314  This paper series has been produced using texts submitted by authors until April 2012. No responsibility is assumed for the content of abstracts.   Conference Organizers: Professor Dr. Dr. h.c. Ulfrid Neumann, Goethe University, Frankfurt/Main Professor Dr. Klaus Günther, Goethe University, Frankfurt/Main; Speaker of the Cluster of Excellence “The Formation of Normative Orders” Professor Dr. Lorenz Schulz M.A., Goethe  University, Frankfurt/Main Edited by: Goethe University Frankfurt am Main Department of Law Grüneburgplatz 1 60629 Frankfurt am Main Tel.: [+49] (0)69 - 798 34341 Fax: [+49] (0)69 - 798 34523     1 Ana Maria Marcos del Cano, Madrid / Spain José Ramón Díez Rodríguez, Madrid / Spain  Bioethics and Health Law: the Living Will. Proposal to Create a  Living Will Record in Europe  Abstract: In this piece of work, we present a proposal to create a living will record in Europe that will allow people to have the same rights wherever they are. Therefore, this article will be studied from the bioethics and health law theory. Keywords: Living will, bioethics, health law, autonomy  The impact of life sciences in the law is becoming clearer and more consequential. Improving quality of life and increased life expectancy brings with it the emergence of new rights and, therefore, the efforts of jurists to establish the necessary legal categories for "naming" these realities  that  directly  affect  the  protection  of  human  rights  and,  at  the  same  time,  the establishment of mechanisms to ensure the new rights are created.  Just as in the field of ethical philosophy was set up as self-vindication of their rights by the  individual  against  the  superior  power  (religious,  national,  social  ...),  in  the  field  of bioethics and in particular in relations doctor-patient autonomy represents a patient's self-assertion against the power (often exorbitant) of the doctor.  Autonomy from a general point of view is the recognition of self-responsible act of every human being has the right to determine their own destiny and personal life, with respect to their own values and world view. Autonomy is the anthropocentric argument that seems to emerge from the secular culture and liberal anti-authoritarian religious ethics and worship the state as the monopoly of legitimate force that imposes moral content.  At the bottom of this concept is the liberal paradigm, hosted at the outset by Stuart Mill, "in  which  no  interest  to  anyone  but  him  (the  individual)  independence  is  absolute.  Over himself, over his body and his mind the individual is sovereign. (...) The only thing men can allow individual or collectively to disturb the freedom of action of some of his fellows is to protect itself. The only legitimate reason that a community may have to proceed against one of its members is to prevent harm to others. It is not reason enough of the physical or moral well this guy "and Kant's postulates in the sense of universal legislation will the individual who is capable of proposed goals and meet them.  2 The autonomy based approach is proposed as one that is not identified without further with the wishes of the agent, but they must pass through the filter "or" filter "of rationality. With this criterion of rationality is not trying to defend a moral theory to be a perfectionist in the state (or a higher court) that imposes a pattern of behavior, but simply that the will as such, "pure", cannot be source of rights, nothing more.  In the present case is clear example of the transformation that is taking place in the final stage  of  life  where  it  must  increasingly  aware  of  the  many  possibilities  that  exist  when deciding on treatments that may or not submit.  It is the expression of the principle of autonomy characteristic of modernity, where the individual has entered not only his life but also manager of the process of dying. And there at the  risk  of  such  a  complex  technology  to  take  you  to  be  unconscious  that  give  rise  to documents that can express their will, commonly known as advance directives (living will).  Living will has been defined as “a document that gives instructions to physicians about certain kinds of health care that an individual would NOT want to undergo. The influence of biotechnology in Law is becoming stronger and has important repercussions. Improving the quality  of  life  and  increasing  life  expectancy  implies  the  emergence  of  new  rights  and, therefore, the efforts of jurists to establish the necessary legal categories to “give name“ to these realities that influence the protection of human rights. Additionally, it is necessary to establish pathways to ensure that the new rights are created. We belong to a research group that has been working on decisions at the end of life for several years. Recently the Spanish ministry  of  Science  and  innovation  is  supporting  a  grant  on  a  project  to  optimize  the information about living will and how to unify the information of the different regions into one national registry. The topic is becoming increasingly important for two reasons: First, the growing value attached to patient autonomy in health care decision making.  And  second,  the  extraordinary  advances  in  clinical  treatments  and  in  life-sustaining technologies, which  on one hand may allow physical survival for years, but on the other hand in some circumstances, could be no longer of real benefit for the patient and become futile. There is a significant number of European Union citizens who are living outside their home state, either on holiday or for work. But the issue here is that many of them choose to live the last years of their life in another country. For example, think of the many people who fix their residence in the Canary Islands, the Balearic Islands in the south of Spain or Italy, Greece and Malta, among others. Therefore, we suggest the creation of a European Registry that would gather the living wills of citizens and would be available for the authorities of the 3 EU countries. In that way, authorities could take into account a person’s living will if he or she is in another country within the European Union.  The current situation is the following one: it is not possible to know if a German person who lives in Spain has given or not living wills in his country. Therefore, in the case of a health emergency, this person will be deprived of his/her capacity to decide regarding certain treatments. We propose a Eúropean Diréctive to harmonize the minimum criteria about the living will and an European Registry. Ideally, there should be a European coordinator of the information through the organization of the European Registry of aliving will record. The role of  the  coordinator  would  be  to  connect  the  national  registry  of  each  Member  State  to  a centralized computer. Therefore, whenever a person in  the EU grants  a living will, there would be a option to enroll in the European Registry to allow that the data automatically appear  in  any  country  of  the  regardless  of  their  nationality.  This  would  also  require  the existence of single coordinated software, which should comply with the highest levels of security in terms of data protection to ensure the privacy of the grantors. Nevertheless, a European Registry of living will would require the creation of standards to unify criteria  Since what a person in one country grants as advance directive could not be allowed in another country.  We understand that, at least, the following aspects should be unified: A)  Who can grant the living will  B)  Contents of the living will record C)  How to grant the living will D)  Language E)  the limits of the Living will record F)  The need of continuous updates G)  Conscientious objection H)  Access to data from the European record and the Protection of the privacy of the subject.  What one needs to think now is:  who can grant the living will record? Only adults can do that? What  about  minors,  or emancipated minors?. We should also  study the problem  of disabled people. Be as it might, we should establish minimum standards to harmonize the existing legislation. It should be discussed if we are talking about care and future treatments of a person's health because that person cannot speak for himself, or if are also talking about the fate of his body. Or if we are talking about personal aspects, accompaniment, spiritual 4 care, respect for beliefs, home care, etc. The authorities of any Member State should be able to  give  the  living  will  regardless  the  nationality  of  the  subject.  The  requirements  and regulations should be age and ability to attend to their personal law as indicated in the internal regulations of each country. Due to the fact that there are several official languages in the European Union, the European registry should include a program for automatic translation to the language chosen by the person who must access the registry. In any case, at least, they should  always  appear  in  English  and  French.  It  should  provide  certain  cases  where  the provisions of extravagant living will contain requests which are contrary to law or public policy of a country. It is advisable to introduce legislation that allows regular modification of these Living Will Record’s documents. The techniques and medical treatments to change and at some point could be presented as incurable by the time evolution is, by the emergence of effective solutions, or because they change some circumstances. It should be discussed the need  to  include  a  general  provision  guaranteeing  the  right  to  conscientious  objection  of doctors who wanted to express it, as well as the citizen's right to get his living will applied. As mentioned before, access to data and to the living will record should be kept under maximum-security data protection.   Addresses: Ana Maria Marcos del Cano, Madrid / Spain. E-mail: amarcos@der.uned.es  José Ramón Díez Rodríguez, Madrid / Spain. 

Bioethics and health law: the living will. Proposal to create a living will record in Europe

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