Informed Consent and End-of-Life Decisions: Notes of Comparative Law
| Date | 01 September 2011 |
| DOI | 10.1177/1023263X1101800302 |
| Published date | 01 September 2011 |
| Author | Carlo Casonato |
| Subject Matter | Article |
18 MJ 3 (2011) 225
INFORMED CONSENT AND ENDOFLIFE
DECISIONS: NOTES OF COMPARATIVE LAW
C C*
ABSTRAC T
Informed consent for medical treatment is oen said to be a legal issue which is as much
discussed a s little understood. is a rticle develops an analysis of the concept of informed
consent particularly at the end of life from a comparative perspective, dividing a number of
relevant countries into two models – one partially open and one partially closed – neither of
them allowing for extreme solutions such a s the right to die, on the one hand, and the duty
to be kept articially alive beyond one’s own idea of human dignity, on the other. According
to such distinction, and paying particular attentio n to the law-in-action governing end-of-
life decisions, the author conside rs similarities and diversities, as well as evolving common
trends.
Keywords: bio-equity; bio-law; end of li fe; euthanasia; informed consent
§1. INTRODUCTION
is paper aims to put forth a few reections, in terms of comparative law, about
informed consent. Aer a brief outli ne of its nature, origin and characterist ics, a critical
survey is presented, instead of a country-by-country exa mination, which combines t he
most interesting themes along with the solutions given by some signicant legal systems.
us, some of the most problematic features w ith which the lega l systems have tried to
respond – each with its own approach – w ill emerge. Aer looking at recognition of
consent as it emerges out of the ECHR (European Convention on Human Rights) as well
* Professor of Compa rative Con stitutional Law at the Law Schoo l of the Univers ity of Trento (Italy);
Director of the Biolaw Project of the Depar tment of Lega l Sc iences i n the same Universit y (carlo.
casonato@un itn.it). e author is grat eful to Roberto Toniatt i, Charles Baron, Mark Christie , Michael
L. Corrado, Amedeo Santosu osso, Jacques Ziller, and Lorenzo Zucca for their comments. e economic
support of the FIR B (‘e Impact of Biotechno logy on Fundamental R ights’) is also ac knowledged.
Carlo Casonato
226 18 MJ 3 (2011)
as of EU Law, the analysis wi ll proceed to single out two models (one partially open a nd
one partial ly closed to individual self-deter mination) within a number of di erent legal
systems.
is paper refers mainly to statutor y sources and c ase law that ha s intervened in
the end-of-life debate: the most signica nt interventions will b e indicated in order to
reconstruct the pri nciple of informed consent in more comprehensive terms.
§2. CONSENT AS A MORAL CHOICE: MEANING AND
ORIGINS
It is true that informed consent is one of the most dis cussed but least understood issues
aecting the t herapeutic professions.1 One possible way for clari cation may b e to
see it as a proc ess and to split it i nto two steps, related but s eparate: information, as a
communication of technical a nd medical data, on the one hand, and consent, as a moral
choice, on the other hand.
e rst component, information, is technical in nature: it deals wit h success rates,
percentage of eects, risk statistics, side eects, adverse reac tions, contra-indications,
alternatives and so on. Due to the medico-technical natu re of this information, it is clear
that doctors, who have knowledge of the med ical data, shall lead this rst phase.
However the second s tep of the process, the choice, is dierent i n nature. Decisions
about which treatments to undergo or refuse, especial ly when life support measures are
concerned, must certainly b e based on a n informational pac kage. In essence, however,
these decisions take on a moral nature. If the technica l data constit ute in formative
elements necess ary for an intelligent decision, the essence of the therapeutic choice is
based on judging the coherence of t he medical proposed treatments toget her with t he
patient’s personal beliefs, with his/her moral ma keup, self-image and t he image he/she
wants to leave for those who she will leave beh ind: in a word – we can say – with his/her
dignity. erefore, it makes sense that the (moral) decision about a particula r treatment
should come from the person (the moral agent) for whom the treatment is intended.
A robust col laboration and shari ng of ideas bet ween doctor and patient is of
course ver y welcome in bot h the phases – consent, in this sense, should not substit ute
the solitude of the doctor in the ‘paternalis tic model’ for the patient’s solitude in the
‘informed consent model’. However if eventually the patient disag rees with the proposed
medical plan, it is the mora l nature of the choice to be taken that imposes the priority of
the patient’s free (moral) will on the doc tor’s (technical) proposal.
is picture of i nformed consent is particularly relevant in contemporary times,
where a number of medica l treatments, from art icial nutrition and hydration to blood
1 See J.W. Berg , P.S. Appelbaum e t al., Informed Consent. Legal eory and Clinica l Practic e (Oxford
University Press , Oxford 2001), p. vii.
Informed Conse nt and End-of-Life Decisions: Notes of C omparative Law
18 MJ 3 (2011) 227
transfusion, a re so critical as to be properly dened as li fe-saving or life-sustaini ng. e
central meani ng of it, however, can be traced back even to ancient t imes.
In the fourt h book of Laws by Plato (427–347 B.C.), the Athenian str anger describes
two categories of doctors: doctors dealing with slaves and doctors taking care of freemen.
e former merely try to ‘repair working tools’:
e slave doctor prescrib es what mere experience suggest s, as if he had exact k nowledge; and
when he has g iven his orders, li ke a tyrant, he rushes o wit h equal assura nce to some other
servant who is i ll.2
e free status and the mora l di mension of his patients, on the contrary, le ads t he
freemen’s doctor to act with, not on, them:
he carries his e nquiries far back , and goes into t he nature of the disorder; he enters into
discourse with the pat ient and with his friends, and is at once getting i nformation from t he
sick man, and a lso instructing him as far as he is able, a nd he will not prescribe for h im until
he has rst convi nced him; at last, when he ha s brought the patient more and more under h is
persuasive inuence s and set him on the road to healt h, he attempts to eect a cure.
In t his in-depth description, freedom and moral ity lead to the respec t of the patient’s
will.
As mentioned above, the moral mea ning of the therapeutic choice is more and more
clear nowadays. Up until a few decade s ago, the cycle of life, from the beg inning to the
end, was largely governed by nature, with few and l imited interventions made by man.
Rapidly summarisi ng, with the advances in the medical sciences and the diu sion of life
supporting therapies, human inter vention came to condition the course of our existence
more and more, arriving at the point where life has been lengthened and improved in both
quantitative and qua litative terms. Just think of the invention of mechanical ventilation
(1952) and dialy sis therapy (1961), or of the rst, even symbolically revolutionar y, heart
transplant (1967).3 Like any other product of science, however, even such medical
innovations cou ld not – and c annot – be i mposed on everyone jus t because they exist.
In this sens e, no technological discovery c an be ‘auto-imposed,’ but instead is the result
of a precise discretionary choice. us, innovations in t he medical eld have created
new, someti mes vast, decision-making discretion with regard to t he opportun ity, the
recipients and t he limits of their practical application. First of all the person legally
responsible for these decision-making a reas had to be identied.
Aer a rst p eriod when the cultura l inert ia, la rgely related to the ‘paternalistic
model’, imposed the physician as the person who exclusively took decisions about
2 Quotations taken from the translat ion by Benjamin Jowett, in the Project Gutenberg: www.gutenber g.org/
ebooks/1750 (last v isited 26 July 2011).
3 See D. Callaha n, ‘Bioethics’, in W.T. Reich (ed.), Encyclopedia of Bioethics (Simon & Schus ter –
MacMilla n, New York 1995), p. 248.
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