Advance directives: Binding or merely indicative? Incoherence of the Portuguese national council of ethics for the life sciences and insufficiencies of newly proposed regulation

European Journal of Health Law

Volumn 16, Issue 2, 2009, Pages 165-171

  Pereira, André ^a  

^a UNIVERSITY OF COIMBRA   (Portugal)

Author keywords

Advance directives; Biomedicine convention; Jehovah's witness; National Council of Ethics for the Life Sciences; Persistent vegetative state (Pvs); Refusal of treatment; Religious discrimination

Indexed keywords

BIOETHICS; BIOMEDICINE; BLOOD TRANSFUSION; FREEDOM; HEALTH CARE ORGANIZATION; HUMAN; HUMAN RIGHTS; INFORMED CONSENT; LAW; LEGAL ASPECT; LIVING WILL; MEDICAL INFORMATION; PERSISTENT VEGETATIVE STATE; PORTUGAL; REGISTER; SHORT SURVEY; TREATMENT REFUSAL; VALIDITY;

ADVANCE DIRECTIVES; BLOOD TRANSFUSION; HUMANS; JEHOVAH'S WITNESSES; PERSISTENT VEGETATIVE STATE; PORTUGAL; TREATMENT REFUSAL;

EID: 67650922309     PISSN: 09290273     EISSN: 15718093     Source Type: Journal    
DOI: 10.1163/157180909X430247     Document Type: Short Survey

References (28)

1. andreper@fd.uc.pt
2. See http://www.cnecv.gov.pt
3. In 1995 there was already a reference to the problem of living wills in the Opinion on the Ethical Aspects of Health Care Regarding the End of Life (1 l/CNECV/95).
4. B. Jennett, F. Plum, "Persistent vegetative state after brain damage. A syndrome in search of a name", 1Lancet (1972)734-737.
5. Opinion on the Persistent Vegetative State.
6. Opinion on the Objection to the Use of Blood and Blood Products for Therapeutic Purposes on Religious Basis.
7. In the previous considerations it is stated: "i) that, if no prior declaration of will exists, the question arises of knowing whether it is in the person's best interest that his or her life be prolonged by continuing medical treatment." This sentence presupposes that "prior declarations" are the main key to solve the ethical question concerning the prolongation of medical treatment.
8. The National Council of Ethics accepts the right to refuse treatment, even if leads to death, as long as the patient has capacity to consent and is conscious. In the words of the Council: "3. The refusal to accept transfusions of whole blood and blood products falls within the right of the patient to decide upon the health care he/she wishes to receive, on condition that the patient's capacity to make that decision is recognized and that the conditions necessary to exercise that choice exist."
9. R. Dworkin, Life's Dominion: an argument about abortion and euthanasia, Harpen Collins Publishers, 1993.
10. On the other hand, the principle of distribute justice has also been invoked (in the Preparatory Report of the Opinion) in order to sustain that the maintenance of these people for several years alive could be in contradiction with a fair allocation of scarce resources. This perspective is hurriedly classified by its detractors as a utilitarian perspective. Nonetheless, such critics apply an "ethics of intention" rather than an "ethics of responsibility" (Max Weber). For some detractors the smallest prospect of recovering conscience should be a sufficient argument to impose or to force a coercive treatment to anyone, irrespectively of his/her ideas and advance directives.
11. The Convention entered into force in Portugal on the 1st December 2001.
12. M. Costa Andrade, "Consentimento em Direito Penal Medico - O Consentimento Presumido", RPCC2004, 14 (1-2) 144. For an overview of the French doctrine and case law see C. Rougé-Maillart, J. Jousset, T. Gaches, A. Guadin, M. Penneau, Patients Refusing Medical Attention: The Case of Jehovah's Witnesses in France, 23 Med Law (2004) 715-723.
13. Similarly, A. Santosuosso, Il Consenso Informato, Raffaello Cortina Editore, 1996, 103.
14. J. Canotilho, Direito Constitutional e Teoria da Constituiç ão7, Coimbra, Almedina, 1225 states: "the principle of practical concordance means - in its essential feature - the coordination and combination of "legal goods" in conflict in order to avoid the (total) sacrifice of some towards the others".
15. H. Nys, "Emerging legislation in Europe on the legal status of advance directives and medical decision-making with respect to an incompetent patient ('living-wills')", 2 European Journal of Health Law (1997) 178-188; L. Iapichino, Testamento Biologico e Direttiυe Anticipate - Le Disposizioni in Preυisione dell'Incapacità, IPSOA, 2000; German National Ethics Council, The advance directive: an instrument of self-determination, June 2005: "The National Ethics Council believes that a mentally competent person must have the right, in order to provide for the possibility of his ceasing to be mentally competent at some future date, to draw up an advance directive containing binding stipulations for or against subsequent medical treatment. (...)"
16. I. Kennedy, A. Grubb, Medical Law3, Butterworths, 2000, 970. Similarly G. Kern, Limitierte Einwil-ligung, Zum Ausschluss von Behandlungsmethoden, Manz, 1999, 192.
17. J. Taupitz, 'Landesbericht Deutschland', in J. Taupitz (Ed.), Regulations of Civil Law to Safeguard the Autonomy of Patients at the End of Their Life -An International Documentation, Springer, 2000, 365. A.R. Maclean, "Advance Directives, Future Selves and Decision-Making," 14 Medical Law Review (2006) 291-320, suggests an analogy with the parental power.
18. Adopted by General Assembly ISBT, July 12, 2000 (The Code has been elaborated with the technical support and adopted by the WHO).
19. J. Faria Costa, "O fim da vida e o direito penal", in: Liber Discipulorum para Jorge de Figueiredo Dias, Coimbra, 2003, 793-794.
20. J. Figueiredo Dias, Direito Penal, Parte Geral, Tomo I, Coimbra, 2007, 487-488 and 492-493.
21. Comitato Nacionale Per La Bioetica, Opinion of 18 December 2003. According to the Comitate, an analogous situation is the Italian and Portuguese regulation of post-mortem organ donation: the consent, even the silence consent of the subject during his life, has legal value after death.
22. Loureiro, back in 1994, defended the validity of these documents even if there were not any legal base, except the general norms of civil law: J.C. Loureiro "Metáfora do vegetal ou metáfora do pessoal? Consi-derações jurídicas em torno do estado vegetativo crónico", Cadernos de Bioetica (1994/8), 27-65.
23. For an explanation of advance directives in Portuguese law, in a comparative perspective, A.G.D. Pereira, O Consentimento Informado na Relação Médico-Paciente. Estudo de Direito Civil, Coimbra, 2004, 240-254.
24. See Projecto No P/06/APB/06 Que cria o Registo Nacional de Directivas Antecipadas de Vontade. Before that, the Association published an Opinion concerning the need to regulate this subject: Assoc¡a-çáo Portuguesa de Bioética (H. Melo, R. Nunes) Parecer N.o P/05/APB/06 Sobre Directivas Antec¡padas de Vontade. See: http://www.apbioetica.org/?lingua= en
25. See German National Ethics Council, The advance directive: an instrument of self-determination, June 2005:" 1 l.Ίhe majority view of the National Ethics Council is that the validity of an advance directive should not be made conditional on its maker's having obtained prior expert advice. However, all members of the National Ethics Council recommend that expert advice be taken before an advance directive is drawn up."
26. Whether legal capacity (Gachäftsfahigkeit) is required, or whether competence to consent is enough (Einwillungsfahigkeit), is a matter of dispute - see A.G.D. Pereira, O Consentimento Informado na Relaçäo Médico-Paciente, 2004,246, where it is argued that legal capacity (Geschäftsfhigkeit) is necessary.
27. See U.H.J. Körtner, Das österreichische Patientenverfü gungsgesetz Entstehungsgeschichte, Inhalt, Bewertung, in http://www.bka.gv.at/ DocView.axd?CobId=17375
28. T. Engelhardt, The Foundations of Bioethics2, New York, Oxford, 1996.