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PONTIFICAL ACADEMY FOR LIFE

LECTURE GIVEN BY H.E. MONS. ELIO SGRECCIA

ITALIAN BILL HIGHLIGHTS AN IMPORTANT ISSUE

"Advance medical directives': what does this mean?"

 

Advance medical directives are often called "living wills". They consist of a written and signed declaration by a person of lawful age who is in full possession of his or her faculties and able to express desires and instruct the physician or health-care personnel on the future treatment that the person wishes to receive or to refuse in the event of serious or terminal illness, and to provide for a possible loss of the ability to understand or will.

The directives can also name an agent to guarantee its observance in the case of the loss of consciousness with regard to religious assistance, the donation of organs and/or the use of the corpse for research, as well as burial.

Significance and historical precedents

This has recently become a hot topic in Italy, with ramifications around the world: on 13 July the 12th Commission of the Senate of the [Italian] Republic (Hygiene and Health Care) approved a Bill that consists of 16 Articles. It was drawn up by Senator Tomassini and is entitled: "Directives of informed consent and declarations on advance medical treatment".

Some newspapers commented that this was "the first step toward euthanasia" (Libero, 15 July 2005). The press gave no information on the preparatory discussions for the Bill, but we know that there were many and that numerous improvements were suggested.

Prior to this proposal, on 18 December 2003, the [Italian] National Committee for Bioethics concluded its work with a similar document entitled "Advance medical directives". This was also approved unanimously after lengthy discussion (with, I believe, one abstention). This document too received little press.

Although both documents address the same topic, it would seem that the Senatorial Commission did not attach much importance to the Document of the National Committee for Bioethics, which is never cited. However, it must be said that even in substance the two texts are not interchangeable.

Yet, one should not automatically describe issuing "Advance Medical Directives" as the "first step toward euthanasia". Directives can be compatible with respect for life; indeed, they can be oriented to providing adequate help for the dying, to enable them to die with the desired serenity.

In 1974, the Association of Christian Hospitals of the U.S.A. formulated a document (Christian Affirmation of Life) on these lines. In it, the future patient declared: "I ask, if possible, to be consulted about the medical procedures that could be used to prolong my life when the moment of death approaches. Should I no longer be able to make decisions concerning my future or should there be no reasonable hope of my recovery from conditions of physical or mental incapacitation, I request that extraordinary means not be used to prolong my life".

Moreover, the Declaration on Euthanasia published by the Sacred Congregation for the Doctrine of the Faith in 1980 states: "It is also permissible to make do with the normal means that medicine can offer. Therefore, one cannot impose on anyone the obligation to have recourse to a technique which is already in use but which carries a risk or is burdensome..." (Declaration on Euthanasia, 5 May 1980; L'Osservatore Romano English edition, 30 June 1980, p. 18).

Furthermore, the previous paragraph states: "It is also permitted, with the patient's consent, to interrupt these means [the means made available by the most "advanced" medicine] where the results fall short of expectations. But for such a decision to be made, account will have to be taken of the reasonable wishes of the patient and the patient's family, as also of the advice of the doctors who are especially competent in the matter" (ibid.).

Thus, there can be written declarations, and moral directives exist, which aim to avoid extraordinary treatment and to attach importance to the patients' rightful wishes.

The Oviedo Convention (Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine), approved in 1997 at the Council of Europe of which today 32 States are signatories, states: "The previously expressed wishes relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes shall be taken into account" (art. 9).

Of course, in the previous article treatment without the appropriate consent is authorized in the case of an emergency or a dangerous situation (cf. art. 8). Consequently, that the Italian Senate should give these just wishes juridical form and recognition ought not in itself imply a step towards euthanasia: this content is usually expressed, among other ways, in the deontological codes of doctors and included in the directives of traditional medical ethics.

From a certain point of view, any regulation that aims to prevent "aggressive medical treatment" and allows leeway to comply with the patient's wishes concerning medical treatment that is extraordinary or dangerous or whose outcome is uncertain can, on the contrary, help prevent abuse and the development of the temptation or conditions conducive to euthanasia.

It must be kept in mind, however, that historically and ethically speaking, there is another kind of "Advance Declaration" that is based on the claim to a right to interrupt life and so-called principle of "self-determination". Here this is understood as a patient's right to put an end to a life he or she holds to be meaningless.

The publication of the manifesto on euthanasia: "A Plea for Beneficent Euthanasia", which appeared in the July/August 1974 issue of The Humanist, presented this type of ideology and fired the public debate on these subjects in our epoch. The arguments presented in this "manifesto" can be traced back to radical forms of scientism that deny any reality other than the one we can know by experience.

With regard to euthanasia, it drew the following ethical consequences: human beings who emerged by chance in a universe that emerged from "chance" and "need" are arbiters of their own fate and need have no other reference than themselves. "Scientific" reason is their only guide and they should be responsible to no one else for their own destiny.

From this premise we can deduce that "the tolerance, acceptance or enforcement of unneccessary suffering is immoral. We believe in the value and dignity of the individual person. This requires respectful treatment, which entails the right to reasonable self-determination".

"It is beneficent euthanasia if, and only if, it results in a painless and quick death, and if the act as a whole is beneficial to the recipient. To require that a person be kept alive against his will and to deny his pleas for merciful release after the dignity, beauty, promise and meaning of life have vanished, when he can only linger on in stages of agony or decay, is cruel and barbarous. The imposition of unnecessary suffering is an evil that should be avoided by civilized society.

"We recommend that those individuals who believe as we do sign a "living will', preferably when they are in good health, stating unequivocally the expectation that the right to die with dignity will be respected" (The Humanist, July/August 1974).

The principle of self-determination

The principle of self-determination can be understood as having two different meanings.
First of all, we know that a free and morally qualified act must derive from an inner deliberation by the individual (autós: "himself", and also, "myself"). In this sense, every truly human act can stem only from an autonomous decision.

However, having said this, the approach to this principle can be understood in two different ways.

The first consists in the fact that this autonomous act is directed and viewed responsibly in relation to a good to be achieved, primarily with respect for one's own being and life and for that of others; in other words, it is expressed in a free and responsible act, or manifested simply as an absolute affirmation of one's own free judgment, referring to the self, and in this case self-destructive because it presumes that one has the right to dispose of one's self, one's person and one's life. Because of this ambiguity, the principle of self-determination requires discernment.

Therefore, to evaluate a Bill that intends to give recognition to "advance declarations", it is necessary first of all to question whether these directives aim at providing help that is respectful of the patient's life, whether they favour the patient's decision when faced with extraordinary treatment, too dangerous and/or burdensome or of uncertain outcome.

At the same time, however, one should consider whether the avoidance of voluntary interruptions of life by recourse to euthanasia are being prescribed, or whether these declarations or directives merely intend to support the patient's right to give instructions to the point of asking for assisted suicide or euthanasia true and proper.

This is why such a Bill should explain the content and limitations of the Declarations of what the patient desires and puts in writing.

It is also essential to explain and determine whether these Declarations express a wish to respect the equality of rights and responsibilities of the physician vis-à-vis the patient; this is not only so that the doctor may refuse to apply the patient's directives should they be found inappropriate or inapplicable, but also should they be contrary to the doctor's own conscience and ethical code.

Its inspiring principle, content and limitations and respect for the physician's conscience are the qualifying criteria with which to judge a Bill on the declaration of a person's wishes.

A look at the Bill of the Italian Senate

The first observation that surfaces from an analysis of the document concerns the almost total absence of instructions on what the content of these declarations should be.

The Bill is limited to expressing the formal, procedural and legal aspects (especially regarding direct or represented informed consent), and a plethora of instructions are given on the guarantees to be offered, through legal representatives or agents, to minors or those incapable of consent. But there are still many oversights in the determination of the content.

As can be seen in this version, two glaring omissions are evident in the draft of this Bill: the absence of an explicit prohibition of euthanasia, and the minimal consideration of the viewpoint of the physician who is summoned to apply the advance directives.

Although the "presentation" of this Bill declares that the document "does not intend to permit, not even by way of interpretation or such like, recourse to euthanasia", and although "the good of life is removed from any kind of impression of disposability" in the legal text, we do not encounter any such explanation, since no article refers to the problem of prohibiting euthanasia.

We recall in this regard that the opinion of the National Committee for Bioethics was expressed as follows in December 2003: "The National Committee for Bioethics deems it essential... to reassert that the patient's right, which it is intended to recognize, to control the treatment to which he or she may be subjected should he or she become incapable of understanding and willing, is not a right to euthanasia nor a subjective right to die... but, exclusively, the right to ask doctors for the suspension or non-activation of therapeutic practices..." (cf. National Committee for Bioethics, Advance Medical Declarations, 18 December 2003).

The absence of any explicit rejection of euthanasia practices in the text of the Bill on advance declarations, precisely because of the affinity and implication of the arguments, could lead to the surreptitious or tacit acceptance of directives that aim, actively or passively, to put an end to human life.

Whereas it expresses an absolute condemnation of aggressive medical treatment that consists in using ineffective therapeutic means with no beneficial results, either immediate or foreseeable, or results that are seriously disproportionate, it in fact makes no such clear declarations on prohibiting euthanasia.

Its other shortcoming is the virtual lack of mention of the autonomy of the physician's conscience.

Article 13 of the Bill establishes that the physician may ignore the arrangements or directives of the patient only if he finds them "irrelevant or inadequate from the scientific or therapeutic viewpoint". It mentions neither the doctor's conscience nor his ethics of duty which are points, moreover, that are explicitly expressed in the Italian Code of 1998, in Articles 35 to 37.

Lastly, it does not specify whether citizens are bound to make these declarations or are simply urged or authorized to present them upon admittance to a hospital.

I deliberately refrain from discussing other directives of a formal type, such as Article 9 on the "mandate" (a separate document from the "living will"), which is not very clearly formulated, nor the obligation to register these declarations with a notary, which might prove expensive.

To conclude, although the commitment of Parliament to allow the leeway for these directives in health-care assistance continues to be legitimate and it is to be hoped that it keeps them optional, it seems to us that the document of the National Committee for Bioethics is more detailed, fuller, and more explicit than the Bill of the Senate Commission.

Let us hope that the commitment of the Senators, who certainly have at heart the protection of the sick and the quality of nursing for the dying, will allow the document to be perfected with a clearer and higher ethical and juridical profile.

   

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