In charge of assessing the law of 22nd April on end of life and of making
proposals, the mission entrusted to Jean Leonetti, UMP deputy, and three of
his colleagues (the socialist Gaëtan Gorce, the communist Michel Vaxès and
the centrist Olivier Jardé) delivered its report to the Prime Minister on
2nd December 2008. After six months of hearings of 60 specialists on ethical
issues and end of life care practitioners, the deputies refuse any
legalisation of the "active assistance to die" or of the "euthanasia
exception" and defend a better application of the law on the end of
life.
An unknown and misapplied law
First of all, the rapporteurs regret that the law of 22th April 2005 related
to patient rights is unknown and misapplied. According to a survey carried
out on health care professionals for the account of the Ethical space of
AP-HP Paris Hospitals (Espace Ethique de l’AP-HP de Paris), only 22% of
health care professionals know that there is a prohibition of unreasonable
obstinacy, 12% that the willing of patients must be respected and 4% talk
about alleviating the pain by applying a treatment which may have a double
effect. Now, in Ile de France, only 3 out of the 150 cancerologists are
trained on palliative care. The law of 22nd April 2005 is not subject to any
information campaign for health professionals from the Ministry for Health ;
this lack of information would even betray, according to Professor Emmanuel
Hirsch, director of the Espace Ethique of the AP-HP, the existence of "fatal
strategies" carried out in order to temporise before creating, tomorrow,
"the conditions of a depenalization in a future law".
Improving training
The mission proposes in this purpose the creation of university chairs of
palliative care which would allow encouraging the research on this sector
and to spread the palliative culture in the hospital. "The palliative
consciousness has to be developed. The accompanying medicine is not a last
resort or a complement ; it is not because we won’t heal people that we
cannot care them."
Unreasonable obstinacy and neonatology
The law of 2005 makes neonatologists aware that it was mandatory, in certain
cases, to resort to palliative care. The prohibition to carry on therapies
with unreasonable obstinacy seems to have modified the attitude of some
mothers faced with a so called medical termination proposal of pregnancy (MTP).
The legal frame of the right care and the accompaniment of the dying, if it
is a new-born baby, reassure some parents on the treatment of their children
at the delivery and turn them away from MTP. According to Doctor Netremieux,
head of the paediatric and neonatal resuscitation department at the CHR of
Rennes, it is a recent phenomenon which "tends to spread very quickly"
and it was not envisaged at the moment of the discussion of the law.
Abroad
The mission went to Holland and Belgium where euthanasia is depenalised, in
Switzerland where the assisted suicide is authorised, as well as in England
which has a law related to palliative care. First, the rapporteur observes
that the "criteria accepted to obtain a right to death are vague" and
that "when we open a right, it is difficult not to open it for all".
In Holland, the number of illegal euthanasia remains high, and at the same
time, where palliative care has been developed, "euthanasia goes down,
because this treatment hardly reduces the demand of death". In
Switzerland, one third of people who asks for suicide assistance does not
present serious or incurable diseases ; in Belgium, psychiatric patients are
euthanized and it is even possible to sample an organ after euthanasia of
the donor.
Terminal sedation
The mission also deals with the complex question of terminal sedation which
is not always well considered by the physicians and should be covered by the
doctrine of double effect, the prime purpose being to alleviate the pain
when the secondary effect unwanted but accepted as a risk which could be to
accelerate the death. The use conditions of terminal sedation should be
specified in the Code of medical deontology. We can wonder when the report
enounces that "a treatment for sedative purpose can be justified when the
feeding-hydration presents a disproportioned, non-useful character", in
vegetative state patients ; in this case, indeed, sedation is not anymore
conform to double effect but becomes a mean to mask the fact that the death
was given by feeding lack.
End of life accompaniment leave
The report proposes also the creation of an end of life accompaniment leave
paid during fifteen days to reweave the links of family solidarity.
Observation of end of life medical practices
The report proposes the creation of this organisation with information and
assessment mission which would allow to reveal illegal practices of
euthanasia and unjustified obstinacy and to adapt accompaniment strategies.
Reminding the fight carried out by the Association for the right to die with
dignity (ADMD), Jean Leonetti takes up the terms from François Goldwasser (head
of cancerology department at Cochin Hospital), "its members advocate an
ex-progress which became corny. It is true that there was a time when it was
better to do that rather than agonizing with torture. But today, with the
techniques implemented, medicalizing death results in alleviating it. This
has to be learnt and often euthanasia is asked or given by incompetence or
by fear".
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Preparation of the revision of the law
In order to prepare the Convention of bioethics, whose ambition is to allow
"the largest expression of opinions and convictions before the
parliamentary debate is engaged to review the bioethics law", Prime
Minister asked the National Consultative Ethics Committee (CCNE) "to
identify the philosophical problems and the ethical questions which raise
this appointment".
The CCNE recommends to bring out, rather than to mask them, the
philosophical, spiritual, political and social foundations of different
options and to explain the semantic choices which reveal basic divisions.
for example: "abortion" or "termination of pregnancy", "nuclear
transfer" or "therapeutic cloning".
Research on embryo: exception to the
rule?
Authorising the research on embryo and stem cells coming from supernumerary
embryos without passing by the current derogatory system may confer to the
embryo a status of thing, what precisely the legislator of 2004 wanted to
avoid. "Whatever the convictions of the one and the others… it is
difficult to deny its human character", reminds the CCNE which mentions
its notification n°8 related to researches and uses of in vitro human
embryos, "the human embryo from the fertilisation belongs to the order of
being and not of having, of the person and not of the thing or animal".
Indeed, Frédérique Dreifuss-Netter, member of the CCNE and rapporteur of
this document introduces the possibility to pass from the current scheme of
prohibition with derogations to an authorisation scheme with limits; she
only sees a "symbolic change"…
Which law for bioethics?
CCNE wonders about questioning cardinal principles of the current plan: the
principle of gratuity and non marketability of human body could be
questioned for gamete donations; also the anonymity could only be respected
within the frame of surrogate motherhood. Finally, the CCNE wonders "if
the worry of respecting founding principles does not lead to minimize other
challenges" as the one of the autonomy and if the field of application
of the law should not be extended to the field of neurosciences,
nanotechnologies or even biodiversity.
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The report of the Parliamentary Office for Scientific and Technological
Assessment (OPECST) written by the deputies Jean-Sébastien Vialatte (UMP)
and Alain Claeys (PS) is aimed to make the Members of Parliament think about
the challenges of the revision of the law of bioethics.
Towards a framework law?
Considering that the revision of this law is heavy and compatible with
difficulty with the rapidity of scientific advances, they advocate an
evolution towards "a framework law which expresses the great principles
and the prohibitions, but does not mention the technicality". This
framework law would be assessed each year by the Agency of Biomedicine and
the OPECST, "which could allow a bigger reactivity" according to
Alain Claeys.
Access to the MTP
On the question of the medically assisted fertilisation, the OPECST proposes
not to reserve these techniques to "stable" couples which have at least two
years of common live, "in order to take into account the evolution of the
society". The report proposes to open the MTP to single women, with a
psychological follow-up and recommends a deep debate for its access to
homosexual couples.
Removal of anonymity?
The reports advocates also that children born through artificial
insemination with donor may know their origins, under some conditions.
Post-mortem implantation
The rapporteurs suggest authorising a woman to use her frozen embryos after
the death of her husband, with her husband’s written agreement, after a
three to six month period after the death and with a psychological follow-up
of the mother.
On the question of the surrogate motherhood, the report is more reserved,
because "the desire to have a child is not sufficient".
Research on embryo
The research on human embryonic stem cells is one the major challenges of
the revision of the law and the reports defends a scheme of controlled
authorisation; it specifies that the "researches on stem cells fertilize
mutually; without the researches on human embryonic stem cells, those very
promising on IPS cells could not have been possible".
Cloning and hybrid embryos
Finally, the MPs pronounce in favour of the authorisation of therapeutic
cloning "subject to availability of human oocytes". They want also a
debate on inter-species "therapeutic" cloning, (in other words on the
creation of hybrid embryos, for example man-animal, as this has just been
authorised in England), "subject to prohibit the use of human oocytes and
the implantation of the cybrid".
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