Abstract
Decision-making for medical care at the end of life is closely related to the broader subjects of patients’ self-determination and informed consent. This chapter explores both issues from the perspective of the Italian legal order in the light of the principles of the Italian Constitution and the standards set by the Codes of medical ethics. It also expands on Italian case law, especially the recent Englaro and Welby cases, both testifying to the important role played by the Italian courts in the absence of a law regulating advance directives. The chapter also offers an overview of the contents and a critical assessment of the Italian draft law, which first attempted to regulate advance directives, also known as Calabrò Bill.
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Notes
- 1.
Andorno (2011), p. 73: “The living wills, … are (usually written) instructions that specify ahead of time personal preferences regarding the provision—or the withholding—of particular treatments in the event that the individual becomes unable to make decisions in the future”. However, he stresses that there is yet no minimum consensus among European countries as to the “minimal formal requirements for the validity of advance directives such as for instance the individual’s legal capacity and freedom of choice at the time of its drafting; his/her incompetence at the time of its implementation, absence of revocation in the meantime; the need of a previous consultation with a health care professional, etc” (p. 78).
- 2.
Gigli (2002): “Vegetative state can occur at the exit from the coma and is characterized by a prolonged condition of supervisory without apparent awareness by the patient or of the surroundings. The patient seems unable to interact with others or to respond to specific stimuli. The pathophysiology of this disorder is not yet clear and the brain damage that can support it are of different types and in different locations. The patient, while alternating sleep to wakefulness, does not show responses with apparent meaning. He is not terminally ill and in no need of machinery for the support of vital functions. However, he needs care, in particular to be hydrated and nourished”. This is the opinion of Gian Luigi Gigli, Head of the Federazione Internazionale delle Associazioni Mediche Cattoliche. The patient in a vegetative state can stay alive for years with minimal assistance. Therefore, the patient in a vegetative state cannot be identified in any way with a terminally ill patient, the former case being characterised as a severe disability that requires only an accurate basic assistance, similar to what happens in many other situations of serious injury to some parts of the brain that limit the ability of communication and self-sustenance.
- 3.
D’Angelo (2011), p. 444, writes “… bioethical issues and advance directives regulation represent, in essence, a significant test of the tendency of the Catholic Church to assume a more direct role in Italian politics or, if you prefer, clear evidence of the real importance that the dictates of the Church’s hierarchy have in the institutional practice of political decision-making, first of all in Parliament”.
- 4.
- 5.
- 6.
This refers to Welby v. the State and Englaro v. the State, infra Sect. 3.
- 7.
- 8.
The Code of Medical Ethics was approved by FNOM-CeO on December 16, 2006. A study of the Codes of Medical Ethics, which followed one another over time, shows the progressive evolution undergone by this subject. The first Code of Ethics of 1954—known as Frugoni Code and never made official—discussed the issue of consent, stating that “consent may be validly given only by those who know exactly the scope and consequences of consent itself, which can occur only exceptionally in the physician-patient relationship”. It is thus established that consent may be requested only by the physician. In the Code of Ethics of 1978, this topic is dealt with in Articles 30 and 39: the latter rule states that the patient’s consent is required when in the proposed treatment there is an inherent risk and that consent must be valid. In Article 30, the problem of disease with poor prognosis is dealt with: it could be hidden from the patient but had to be disclosed to the family. A new Code of Ethics was published in 1989, first replaced in 1995 and again in 1998: in this new text, it is shown that consent is now well established in the medical culture. In particular, Article 30 refers clearly and simply to the kind of information that is required for consent to treatment, stating that it must be appropriate and consistent with reality, taking into account the capacity of understanding of the patient in order to promote maximum adhesion to the proposed diagnosis and therapy.
- 9.
- 10.
The terms “euthanasia” and “assisted suicide”, present above, all in the political and social debate linked to the draft legislation on “advance treatment directives”, do not appear in the Italian Criminal Code due to the already-mentioned semantic and phenomenological variance of the words, which generates undoubted difficulties of standardising them. The 1930 Criminal Code does not provide a specific regime for euthanasia, but the relative conduct can be considered, certainly with some difficulty, by reference to the paradigmatic cases of “murder by consent” (Article 579 of the Criminal Code) and “instigation or assisted suicide” (Article 580 of the Criminal Code), as well as, obviously, “murder” (Article 575 of the Criminal Code). See the chapter by Corn, in this book.
- 11.
The Italian legal literature on these topics is very wide: Lessona (1950), p. 336; Pergolesi (1961), p. 112; Mortati (1961), p. 1; Carlassare (1967), p. 14; Merlini (1970), p. 78; Bessone et al. (1974), p. 67; Vincenzi Amato (1976), p. 32; Busnelli and Breccia (1978), p. 89; d’Alessio (1981), p. 536; Modugno (1982), p. 303; Pezzini (1983), p. 21; Caravita (1984), p. 14; Luciani (1986), p. 439; Romboli (1988), p. 81; Bottari (1991), p. 79; Modugno (1995), p. 40; Teresi (1998), p. 114; Bottari (2001), p. 112; Balduzzi and Di Gaspare (2002), p. 108; Chieffi (2003), p. 18; Rodotà (2006), p. 112; Zatti (2009), p. 313.
- 12.
Cheli (1997), p. 51.
- 13.
Bartole et al. (2001).
- 14.
Constitutional Court, 14 July 1986, n. 184, available at http://www.cortecostituzionale.it.
- 15.
Mantovani (1990), who states that “collective health cannot be conceived as a good in contrast to that of individual health”. In the event of a clash between those two interests, “the collective interest of health cannot prevail over that of the individuals and therefore the imposition of the sacrifice of those goods would be in breach of the principle of protection of the human personality in its intangible rights”.
- 16.
Luciani (1980), pp. 669–679; Modugno (1982). In particular, in cases where the need to protect the health of the individual joins the equal need to protect the entire community, the right of the individual must be balanced with that of the community to the extent available, regarding health treatment, mandatory or coercive (paragraph 2 of article 2 of the Constitution).
- 17.
- 18.
On the specific issue of vaccination, see Panunzio (1979), pp. 890–902.
- 19.
Crisafulli (1982), pp. 557–566.
- 20.
Pace (2008), p. 87.
- 21.
Mortati (1961).
- 22.
- 23.
- 24.
- 25.
The function of Article 2 Constitution, considered in the totality of its systematic articulations, is that of a general “open” clause aimed to protect the person. Through the statement of the unique value of the human person, the rule “requires that the person is protected in all its manifestations essential to its development, even when they have not been made explicit through a type of regulatory legislation”. In this way, “the protection of personality can be considered unitary, undefined, unlimited, flexible and adaptable as far as possible to the concrete situations and to the cultural and environmental problems in which it occurs”.
- 26.
Constitutional Court, 23 December 2008, n. 438.
- 27.
- 28.
- 29.
Fineschi (1996), p. 28.
- 30.
Article 44 states that “if it is accompanied by lack of conscience”—and this is the first step towards the situations for which today we discuss about the advance directives treatment—“the physician shall act in good faith and consciousness continuing in therapy until fairly useful”. It is left, therefore, to the physician to decide what the useful therapy to the patient is. The importance of this rule lies in the fact that it, for the first time, takes into account the quality of life as a parameter of behaviour in the case of terminally ill patients.
- 31.
Cecchi, (2006), p. 113.
- 32.
This article, innovative in relation to the text of the previous Code, stresses the need for respect by the physician of the clearly expressed will of the subject about his choices in order to protect his own health.
- 33.
Specifically, if the patient has been sedated and is therefore no longer able to decide, the physician and the hospital are required to reattach the ventilator to restore breathing and avoid the risk of life.
- 34.
Procura di Roma, opinion 11 December 2006, Bioetica, 2010, p. 34.
- 35.
Having noted that his request to the President of the Republic “to obtain euthanasia” could not be upheld, Welby had spoken to two physicians so that they could satisfy his request. While Dr. Casale had preferred to wait for the intervention of the judiciary, Dr. Riccio considered it to be his duty to grant the request of the patient and to accompany him in the short period of time between the plugging off of the ventilator and death.
- 36.
Riccio (2008), pp. 11A–17A.
- 37.
The case of Eluana has a difficult qualification: this is due to its strong symbolic power and the fact that, for the first time, the issue of the interruption of artificial hydration is addressed.
- 38.
Court of Lecco, 18 January 1999, Foro italiano, 1999, p. 1306.
- 39.
Nivarra (2010).
- 40.
The reference is to Articles 1 and 33 of Law No. 833/1978, which established the National Health Service.
- 41.
The reference is to Article 5 of the Council of Europe Convention on Human Rights and Biomedicine (Oviedo Convention) and to Article 3 of the Charter of Fundamental Rights of the European Union.
- 42.
The Convention on the Rights of Persons with Disabilities was adopted on December 13, 2006, during the sixty-first session of the General Assembly of the United Nations by resolution A/RES/61/106. The Convention and its Optional Protocol were opened for signature on March 30, 2007. Until May 14, 2007, there were 92 signatures to the Convention, 50 signatures to the Optional Protocol, and one ratification to the Convention. This is the first major human rights treaty of the twenty-first century.
- 43.
The official definition of permanent vegetative state was coined in 1972 (Jennett (2002), pp. 12–31). Unlike the coma, PVS is a state or condition in which there is no real disease: the subjects may not have precise pathologies but are still in situations characterised by the loss of upper and sensory functions. The PVS is distinguished from brain death: this requires, instead, a complete and irreversible injury throughout the brain that is equivalent to the death of the body. A study group of the Italian Society of Neurology proposed to consider lawful the suspension of any life-sustaining treatment, including artificial nutrition and hydration, giving reasons for this opinion in the substantial identification of the essential condition of PVS and the death of the person. This conclusion was criticised by the National Bioethics Committee, which noted that the legal system does not foresee any “cortical” criterion for ascertaining death.
- 44.
Ferrando (2006), p. 149.
- 45.
The Draft Law provides that “nutrition and hydration, in the various forms in which science and technology provide them to the patient, are forms of life support and physiologically designed to relieve suffering until the end of life. They may not be the subject of an advance treatment directive”; it justifies this prohibition as being in compliance with the UN Convention on the Rights of Persons with Disabilities, which states, at Article 25, alinea f), that States Parties shall “Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability”.
- 46.
The rule is very clear on this point because it highlights how it takes a will substitute in case of lack of advance directives obliging the trustee or, in the absence of this figure, the guardian or “the spouse unless legally separated or de facto, the unmarried, the children, the relatives within the fourth degree”. The Supreme Court in 2007 has extended the powers of the legal representative, subjecting them to two constraints: the exclusive interest of the patient and best interests for him.
- 47.
The aid of anaesthesiologists and neurologists has provided opportunities for closer examination and comparison. For patients in PVS, the physician cannot avoid taking into account the previously expressed wishes of the patient when the patient is no longer able to express his will. About the lawfulness of the denial of a life support measure such as artificial feeding, a new study by two research teams from Cambridge and Liège has highlighted the possibility that some individuals held in a vegetative state are not entirely without conscience. In other words, the use of modern methods has shown metabolic responses and possible emergence of conscience. From this we can deduce the overcoming of the schematic pattern of vegetative state, understood as a medical condition in which the cortex is completely devoid of functions. The possibility of any residual mental activity calls into play the principle of self-determination of the patient. In view of these scientific breakthroughs, the debate has stalled in Italy, both in the progress of the analysis of the bill and in the debate within civil society. This situation of intellectual stagnation is likely to miss the opportunities offered by the biomedical revolution and is likely to confer only to the legislator the task of making law an instrument that does not meet the expectations of those who suffer. The contingent circumstances of the low degree of authority that the research enjoys in Italy do not help the debate: all this does not open up the door to a serene view of the near future.
- 48.
In this sense, it should be read that Article 9 provides for the creation of a registry of advance directives for treatment at the national level. In addition to having found inspiration in the American register of living wills: this register is in the ownership of the Ministry of Labor.
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Ivone, V. (2013). Advance Directives Regulation in Italy: Between Consent and Legal Rules. In: Negri, S., Taupitz, J., Salkić, A., Zwick, A. (eds) Advance Care Decision Making in Germany and Italy. Veröffentlichungen des Instituts für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim, vol 41. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-40555-6_3
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