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Getting a handle on 'advance directives'
The opinion of the Italian National Bioethics Committee on Advance
Directives concerning Treatment has now been published after lengthy
preparatory work. It has at last clarified a problem that has been the
subject of a far-reaching debate for years and whose scope has not
always been clear.
In particular, the document provides clear indications not only to
health-care workers, rightly concerned with their own professional
responsibilities, but also to public opinion, split between the equally
just anxiety to avoid on the one hand the dangerous aberration towards
euthanasia and, on the other, aggressive medical treatment, while
safeguarding the bioethical and juridical principle of informed consent
to medical treatment.
This document treats a problem that can arise: whether a person
should express in advance one's own wishes regarding unwanted treatment,
in the case of no longer being able to express informed consent due to
illness or injury.
This is an extremely sensitive problem. The National Bioethics
Committee offers criteria for its interpretation and evaluation, as well
as valuable, balanced and practical recommendations.
For an adequate assessment of opinion, two points must be considered.
The first concerns new features of the problem under examination,
They justify and indeed require direct intervention in order to guide
medical practice according to ethics and the law.
The new features stem primarily from the gradual adaptation of
medical interventions to the model of "informed consent" regarding
medical treatment.
This model expresses greater sensitivity to respect for the dignity
of the person, who is actively involved in his or her own treatment. It
has been confirmed in constitution
al, supranational and international measures, sanctioning the principle
of therapeutic freedom.
The newness of the problem, however, also stems from the fact that
medical progress, in treatment and in diagnosis, is giving rise to even
broader medical options which have both positive and negative
dimensions.
Consequently, a doctor cannot be left solely responsible for choosing
treatment. In the face of a wide range of possible treatments for the
same illness, for example, the decision might be not to choose the most
expensive treatment which could reduce the patient's family to dire
want, or a treatment that is contradictory to personal religious belief
or which is most painful or invasive.
Purpose of advance directives
Among the innovations, the vast array of today's medical
possibilities should also be recalled. These include, for example, in
the realm of intensive care, the possibility of keeping an unconscious
person alive for a long time, with the advantage of potential recovery
but the risk of aggressive medical treatment.
The second consideration concerns the fact that, if properly
understood, advance directives for treatment have nothing to do with
euthanasia, whether active or even passive. Indeed, such directives aim
at making possible a personal relationship between doctor and patient in
an exceptional situation.
In short, in the dramatic situation of an individual incapable of
making decisions, an advance directive attempts to guarantee the role
normally carried out through informed dialogue between patient and
physician, aiming to ensure that the patient's true interests, overall
health and well-being prevail.
As the document of the Italian National Bioethics Committee clearly
states, the purpose of advance directives is to overcome "the isolation
of those who cannot express themselves and the loneliness of those who
must decide".
Therefore, the National Bioethics Committee expresses the opinion
that advance directives for treatment are legitimate when they comply
with specific subjective and objective requirements that must exist
concurrently.
First, from the subjective viewpoint, an inviolable condition is that
such directives can only be drafted by persons who have come of age.
They must be capable of understanding and desiring, must be informed and
autonomous, and in general must not be subjected to any family, social
or environmental pressure.
The importance of this requirement is quite clear since, as has been
said, advance directives explain the wishes of the patient who is no
longer capable of self-expression and who obviously cannot be replaced
by anyone else.
The objective conditions are more numerous and varied.
First, advance directives must not have euthanasia as their goal,
which is contrary to positive law, the rules of medical practice and
deontology.
This fundamental explanation nonetheless clarifies that the
directives in question are no more than a particular procedure,
important in the case of a patient's inability for self-expression or
demonstrating personal wishes concerning medical treatment
—
wishes which, as in every doctor-patient relationship, call for the
doctor to respond responsibly in the perspective proper to the medical
art, whose treatment is for human life and not its suppression.
Advance directives: clear, personal
There is then the requirement that declarations of previously
expressed wishes be personalized and may not consist merely of the
addition of a signature to a form or printed document: they must be
written in such a way as to express a positive desire on the patient's
part and not mere adherence.
Moreover, they must not encourage generic, ambivalent or incomplete
directions which leave room for doubt concerning their application.
Finally, the declarations must indicate as clearly as possible the
clinical conditions that will require them to be taken into
consideration.
With regard to the subjective and objective conditions mentioned, the
hope contained in the opinion is that the future patient, when making
advance directives, may be aided by a doctor. This assistance could help
ensure that the directives are expressed by an individual who is in full
possession of mental faculties and will, and in particular could
effectively help explain the individual's wishes with regard to clearly
identified clinical situations, thus avoiding the risk of declarations
that are general, equivocal or actually contrary to positive law,
medical practice or deontology.
For this reason, the provision exists in advance directives that one
or more trustees be named who must be involved by doctors in the
decision-making process on behalf of patients who have become incapable
of understanding or expressing their wishes: obviously, these trustees
may not depart from the wishes of the declarant nor, even less, may they
make decisions that he or she could not legitimately have taken.
However, the possibility of their presence, which in any case could
not be legally binding but would give authoritative support to the will
of the incapacitated, can be very useful, both to avoid any unlawful
tendency to neglect the patient and, something that is more likely, the
temptation to resort to aggressive medical treatment by health-care
workers concerned to protect themselves from professional liability.
The presence of trustees, moreover, can help the doctor to understand
the exact wishes of the patient should there be, in practice, a
plurality of legitimate diagnostic or therapeutic opinions.
Responsibility of medical doctors
Regarding advance directives which, I repeat, are concerned with
legitimately possible treatments and not with euthanasia, the doctor's
position is key.
Indeed, the doctor is obliged to take into consideration the
previously expressed wishes of the patient, just as he or she is bound
in every case to consider the will of a patient who is sui compos
and thus capable of self-expression.
As in every medical relationship, however, doctors cannot be bound by
their patients' wishes, since they must make patients comply with
whatever science and their consciences consider should be done.
In this perspective, the National Bioethics Committee's opinion
contains a mechanism for guaranteeing these two different positions,
those of the patient and the doctor, which seems to me valuable from
both the bioethical and legal standpoints.
Basically, it requires that the doctor, who either complies with the
advance directives expressed by the patient or does not do so because he
considers them contrary to positive law, medical practice or deontology,
must always and in every case "formally and adequately explain the
reasons for his or her decision in a medical report".
The obligation on the doctor's part to express his or her motivations
in writing guarantees in practice the possibility of checking in every
case to ensure that the doctor's decision, one way or the other, was not
arbitrary or inadequately considered but corresponds to effective de
facto circumstances in relation to established practices in the exercise
of the medical profession.
Feeding-tube problem
One point in all this delicate topic of advance directives is left
open in the document of the Italian National Bioethics Committee: a
document which, it is right to recall, is in the form of an opinion and
reflects the various positions that exist in this body. I am referring
to the problem of instructions that request the withdrawal of artificial
nutrition and hydration.
In confronting the opinion of those who maintain that such
instructions are legitimate, the
document also records the contrary opinion, that the patient's power to
act can concern treatment that integrates forms of aggressive treatment
because these can be disproportionate or even futile, but cannot refer
to interventions of a non-extraordinary kind
aimed at life support, such as artificial nutrition or hydration.
There is no doubt that the latter is the ethically and
deontologically correct position,
since although on the one hand artificial nutrition and hydration today
can no longer be
considered extraordinary means, on the other hand, they prevent the
terminally-ill patient from further and even worse suffering.
The point is not secondary or of little importance, because it is
precisely on the topic of
instructions which suspend or do not suspend artificial nutrition and
hydration that a pure
but subtle discrimination comes into play between declarations
concerning therapeutic options and passive euthanasia.
It is quite obvious, in fact, that withdrawal of these life supports,
which in itself would not seem to even enter into the medical and
juridical concept of treatment, is objectively an act that in itself
causes death.
However, it seems to me that the principles and guarantees postulated
in the opinion, taken together and despite the fact that different
positions on the above point are recorded in it, ought to lead to a
reliable and sure end: that requests for withdrawing artificial
nutrition and hydration are foreign to legitimate advance directives for
treatment.
This is not only because, as has been said, these are activities that
cannot properly be defined as therapeutic, but also and above all
because this withdrawal would clearly contradict very precise ethical
and juridical principles, such as those concerning solidarity and the
inability to freely dispose of one's own body, which in Italian law are
constitutionally recognized and guaranteed.
In conclusion, it is hoped that the legislature will explicitly
intervene in this regard, following the authoritative instructions of
the National Bioethics Committee contained in this latest proposal and
also bearing in mind those contained in previous proposals that
reinforce the frame of reference.
An intervention by the Italian legislature is needed, not only in
order to bring certainty and tranquility to a subject that today, for
various reasons, creates apprehension in public opinion and among
health-care workers, but also to comply with precise commitments that
were internationally assumed with the 1997 Oviedo Convention.
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