revueneurologique172(2016)719–724

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General review

End-of-life, euthanasia, and assisted suicide:

An update on the situation in France

R. Aubry a,*,b
a Axe « E´thique et progre`s me´dical », Inserm CIC 1431/neurosciences inte´gratives et cliniques, EA 481,
university Bourgogne Franche-Comte´, 2, place Saint-Jacques, 25000 Besanc¸on, France
b CHRU de Besanc¸on, 2, boulevard Fleming, 25030 Besanc¸on, France

info article abstract

Article history: On February 2, 2016, the French parliament adopted legislation creating new rights for the terminally ill. The
Received 5 June 2016 Accepted 27 text modifies and reinforces the rights of patients to end-of-life care and strengthens the status of surrogate
September 2016 Available online 21 decision makers. Under the new regulations, advance directives become legally binding though not
October 2016 unenforceable. Two types of advance directi-ves are distinguished depending on whether the person is
suffering or not from a serious illness when drafting them. The attending physician must abide by the
Keywords: patient’s advance directives except in three situations: there is a life-threatening emergency; the directives are
Law manifestly inappropriate; the directives are not compatible with the patient’s medical condition. There is no
End-of-life time limit on the validity of advance directives. They are to be written in concordance with a model
Patient’s right elaborated by the French superior health authority. This model takes into account the person’s knowledge (or
Advance directives not) of having a serious illness when drafting his/her advance directives. In all likelihood, physicians will be
Sedation called upon to help patients elaborate their advance directives. The law also has a provision for a national
registry – potentially the shared medical file – to be designed as a reference source to facilitate storage,
accessibility and safety of advance directives. The law introduces the right to continuous deep sedation until
death in three specific situations: (i) at the patient’s request when the short-term prognosis is death and
continuous deep sedation is the only alternative for relieving the patient’s suffering or one or more otherwise
uncontrollable symptoms; (ii) at the patient’s request when the patient chooses to withdraw artificial life-
sustaining treatment and such withdrawal would be rapidly life-shortening and susceptible to cause
unbearable suffering; (iii) when the patient is unable to express his/her wishes and the collegiate medical
decision is to withdraw aggressive futile life-sustaining treatment; continuous deep sedation is mandatory
when the patient presents signs of suffering or when the patient’s suffering cannot be evaluated due to the
patient’s cerebral or cognitive state. The law stipulates prior control of such practices, implying the
development of a new type of collegiate procedure for medical decision-making. Satisfactory application of
this new law will depend greatly on the implementing decrees. It will also depend on the implementation of a
genuine policy for the development of palliative care. Professional

* Correspondence.
E-mail address: raubry@chu-besancon.fr.
http://dx.doi.org/10.1016/j.neurol.2016.09.007
0035-3787/# 2016 Elsevier Masson SAS. All rights reserved.
720 revueneurologique172(2016)719–724
guidelines will be needed. Several issues relevant to the field of neurology remain unre-solved or are
introduced by the new regulations. Further in-depth reflection and research are need.
1. Introduction
French legislation on end-of-life care was recently changed when the
parliament adopted law no 2016-87 on February 2, 2016, creating new
rights for patients and persons at the end of their life.
This article offers us the opportunity to explain the changes this new
law imposes and to discuss the implications for neurology.
Beyond an explanation of this specific law, we will explore the topic
of end-of-life care and its relationships with the questions of euthanasia
and assisted suicide of persons suffering from advanced-stage
neurological disease (brain tumor or neurodegenerative disease) or brain
damage.
2. Semantic definitions
In this context, it is important to carefully define the words used to
describe these sensitive questions concerning the end of life.
2.1. Pharmacologically-assisted suicide
Assisted suicide consists in giving a person the means necessary for
suicide. In this situation, after delivery, the lethal product is self-
administered by the person committing suicide. The only voluntary action
producing the lethal effect is made by the person who can, within his/her
private sphere, terminate his/her own life. The person in possession of the
lethal product is free to decide against self-administration.
Although assisted suicide necessarily involves the inter-vention of an
outside person (prescription, authorization), the responsibility for the final
action is fully born by the person who requests assistance. It must be
noted that the notion of assisted suicide is fraught with tension because of
the opposing notion of duty to assist a suicidal person.
Pharmacologically assisted suicide remains a penal offence in France.
2.2. Assisted suicide
The notion of assisted suicide is based on the precondition that a person
has the will to voluntarily terminate his/her own life but not the concrete
means to do so.
This type of situation is common in neurology where certain patients
with a neurological disability – e.g. tetrapa-resia, tetraplegia, or locked in
syndrome – are unable to terminate their own life even though they decide
indepen-dently to do so. In this context, the person asks a third party, who
can be a healthcare professional, in which case the term
# 2016 Elsevier Masson SAS. All rights reserved.
becomes ‘‘medically assisted suicide’’, to perform the act he/ she cannot
perform alone.
Assisted suicide remains a penal offence in France.
2.3. Euthanasia
According to commonly accepted definitions, euthanasia is an action
designed to voluntarily terminate the life of a person who has a severe
incurable disease that is performed at the request of that person and with
the objective of ending a situation the person considers intolerable1.
Individual persons may express simultaneously their desire to die and
their refusal (or their psychological incapacity) to terminate their life
themselves – irrespective of any context by which a disease state would
prevent them from taking the necessary action – or their preference that a
physician, at their request, should execute the lethal act instead of
themselves.
Euthanasia remains a penal offence in France.
2.4. End-of-life sedation
‘‘Sedation is the search through medication for diminished vigilance,
even to loss of consciousness. Its goal is to diminish, or eliminate, the
perception of a situation that for the patient is intolerable despite the
fact that all of the available means appropriate for this situation have
been proposed but have not achieved the desired relief2’’.
Sedation is a medical act. It can be intermittent (temporary sedation)
or continuous. The depth of sedation may vary (vigilant sedation/coma).
Sedative treatments, used to obtain relief, diminish vigilance or
consciousness in a dose-dependent manner. These treatments alter both
cognitive function and commu-nication, which may be desired but which
is necessarily questionable because communication with one’s close
family and friends is of utmost importance, especially at the end of life.
1
This definition was retained by the CCNE (French governmen-tal
consultative advisory council on bioethics issues [Comite´ consul-tatif national
d’e´thique]) in its opinion no 121: End of life, personal autonomy, will to die
[Fin de vie, autonomie de la person, volonte´ de mourir]. July 1, 2013.
2 Consensus opinion. Sedation for distress in the terminal phase and in
specific and complex situations [La se´dation pour de´tresse en phase terminale
et dans les situations spe´cifiques et complexes] [2].
 revueneurologique172(2016)719–724
In all cases, before administering sedation in the terminal phase, a
concerted consultation is required to examine its possible effects3.
3. French law no 2016-87 of February 2, 2016 creating
new rights for patients and for persons at the end of life
French law no 2016-87 of February 2, 2016 is a prolongation of the law
no 2005-370 of April 20, 2005 (called the Le´oneti law) relative to
patients’ rights at the end of life. The new law reinforces existing patients’
rights and adds new rights.
It was promulgated after nearly 4 years of reflection with public and
parliamentary debates.
3.1. Reinforcing existing patients’ rights
The right to terminate one’s existence without aggressive and futile
therapy is confirmed. If a therapeutic act is ‘‘futile, or disproportionate, or
has no other effect than to sustain life artificially, it may be suspended or
not undertaken, in compliance with the patient’s will’’.
Persons at the end of life have the right to die without suffering, in all
circumstances, even in the most complicated situations. ‘‘Everyone has
the right to die with dignity, with the best possible relief of suffering.
Healthcare professionals implement all means available to guarantee this
right. The physician institutes analgesic and sedative treatments to relieve
the suffering of patients with very advanced-stage or terminal illnesses,
even if such treatments can have a life-shortening effect’’.
The right to have one’s wishes respected is reinforced. French
legislation instituted the legal status of the personne de confiance, i.e. the
surrogate decision maker or healthcare proxy, in 2002. The legal status of
this person was consecrated in 2005 and is reinforced in the present law.
The personne de confiance expresses the will of the sick person, and
statements made by the personne de confiance take precedent over those
of other people. The attending physician has the obligation to ensure that
patients are informed of the possibility of designating a personne de
confiance. Patients designate their personne de confiance using a written
document that is co-signed by the designated person. In this document, the
patient states the duration of the mandate. Under judicial guidance, a
person under legal guardianship can now draft advance directives.
3.2. Advance directives become legally binding
The new law instituted several changes concerning advance directives
that affect their validity, their impact on medical decision-making, their
content, their scope and their conser-vation:
3 4
Reference made to the notion of shared deliberation expressed in the
European Council bioethics committee (DH-BIO). Guide sur le processus
de´cisionnel relatif aux traitements me´dicaux dans les situations de fin de vie :
European Counsel, Strasbourg, May 2014.
721
the law distinguishes two types of advance directives depending on
whether the person has a serious disease or not at the time the directive
is written;
attending physicians are now required to consider advance directives as
the expression of the will of patients who are no longer able to express
their desires. Before this law, such directives were consultative. Under
the new regulations, advance directives become legally binding though
not unenforceable. The physician is required to abide by the directives
except in three situations:
there is a life threatening emergency,
the directives are manifestly inappropriate,
the directives are not compatible with the patient’s medical
condition. In situations other than life threa-tening emergency, non-
application of advance directi-ves must now emanate from a collegial
decision-making process. Such decisions will be made – a decree
and/or professional guidelines are expected to detail this point – after
concerting with at least one other physician who is qualified to
evaluate the concerned pathology and who has examined the patient.
This second opinion will be recorded on the patient’s medical chart;
the field of application is broadened. Advance directives now express a
person’s will relative to his/her end of life and the conditions under
which treatments or medical inter-ventions are to be pursued (a notion
not present in the earlier law), limited, discontinued, or refused;
the former law limited the validity of advance directives to 3 years. The
new law does not make any stipulation as to the duration of the validity
of the directives. This change can probably be explained by the fact that
the length of time during which certain patients with neurodegenerative
diseases may survive lasts for long periods measured in years;
to be applicable, directives must be precise: the new law states that they
must be written in compliance with a model
elaborated by the French superior health authority (HAS4). This model
takes into account the fact that when writing the directives the person is
aware or not of having a serious illness;
ensuring that all patients have written advance directives is not a
primary objective. The goal is for advance directives to be used as an
instrument of dialogue helping the person with a terminal disease
anticipate his/her own end of life and express as accurately as possible
his/her personal decisions [1];
healthcare professionals, especially attending physicians, will be called
upon to help the patient draft his/her advance
directives. The IGAS5 was assigned a specific mission concerning
advance directives [2] and considers that primary care physicians have
an obligation to assist patients who want to draft their advance
directives. According to the IGAP, this accompanying assistance is a
medical consultation;
HAS: French Superior health authority [Haute Autorite´ de la sante´].
5
IGAS: French Inspectorate general for social affairs [Inspections
ge´ne´rales des affaires sociales].
722 revueneurologique172(2016)719–724
in the same line as the Council of Europe recommenda-tions, and in
accordance with several European jurispru-
´ and the withdrawal of all life-sustaining treatments.
dence decisions and the Conseil d’E tat decision Vincent Lambert of
June 24, 20144, in the event that the patient has not made any advance
directive, the attending physician seeks directives from the personne de
confiance, or by default, from close relatives or friends (Art. L.1111-
12-article 12);
´ inevitable short-term outcome, with or without sedation.
in order to ensure direct access to advance directives, a Conseil d’E tat
decree will be promulgated, after consultation with the National
committee on information and freedom, to define the conditions of
validity, confidentiality, and conservation of advance directives in a
national registry. As stated in the law, this ‘‘registry’’ serving as a
reference for storage, access, and safety of advance directives could in
fact, according to the IGAS report cited above, be a shared
medical file managed by the CNAMTS6 and the ASIP7, as described by
the framework law on modernization of the healthcare system.
4. Introduction of a new right: the right, under certain
conditions, to continuous deep sedation
Professional guidelines, validated by several learned societies and the
French superior health authority (HAS), have been available for several
years5.
The law details three exceptional circumstances under which the
physician has the obligation, in order to avoid patient suffering, to
institute an exceptional type of sedation: continuous deep sedation until
death:
at the request of the patient when death is eminent (i.e. within a short
time-span to be defined by professional guidelines, probably a few
hours or days) and continuous deep sedation is the only means by
which the patient can be relieved of suffering or one or more otherwise
uncontrol-lable symptoms;
at the request of the patient when he/she chooses to discontinue
treatments sustaining life artificially, this discontinuation necessarily
leading to short-term fatal outcome and potentially inducing intolerable
suffer-ing;
when the patient cannot express his/her will and the physician, after a
collegial decision-making process, discontinues futile aggressive life
sustaining treatment; continuous deep sedation is necessary when the
patient presents signs of suffering, or when the patient’s suffering
cannot be assessed due to the patient’s cerebral or cognitive status, this
concerning brain injured patients of all ages, but also patients with very
advanced-stage cognitive disorders.
6 190 million Euros. The objective is to create one pallia-tive care bed per
CNAMTS : French national healthcare fund for salaried employees [Caisse
nationale de l’assurance maladie des travailleurs salarie´s].
7 university curriculum.
ASIP: French Agency for shared information systems in health [Agence
des syste`mes d’information partage´s de sante´].
The law provides that continuous deep sedation, in situations where
such sedation is mandatory, should be combined with analgesic treatment
It is to be noted that under these circumstances, continuing artificial
nutrition and hydration is to be considered as unwarranted unreasonable
obstinacy.
It is obvious that in these three exceptional situations, death is an
A quite different reflection is required when the life expectancy of a
person with a serious incurable illness is measured in weeks. In this
situation, if sedation is necessary to relieve refractory symptoms, such
sedation, according to professional guidelines5, should be modulated, i.e.
not necessarily deep, but sufficient to provide symptom relief.
According to the law’s provisions, an a priori control is required
before implementing these practices. This control is performed within the
framework of a new type of collegial process that will be the object of
upcoming implementation decrees. The patient’s attending physician will
ensure that the conditions are met for continuous deep sedation after
concerting with the members of the care team, if there is one, and the
justified opinion of at least one other physician called in as a consultant.
Satisfactory application of this new law will depend greatly on the
implementing decrees on advance directives and continuous deep sedation
until death. Satisfactory application will also depend upon the
implementation of a genuine policy for the development of palliative care.
A priori, the imple-mentation of the four areas of action of the Plan 8 for
accompanying and palliative care (CNAMTS) should facilitate this
national policy. The Plan’s areas of action are:
patient education to enable patient-centered decision making;
professional training, research and knowledge transfer on palliative
care;
home care: favoring palliative care in the patient’s home, including
patients residing in social and medicosocial institutions;
guaranteed access to palliative care: reducing inequality of access to
palliative care.
Finally, proper use of this law will also largely depend upon the
professional guidelines to be established.
The law provides for an annual government report to Parliament –
before the vote on draft legislation for Social Security funding9 – on
implementation of the law and the plan. This regulatory and financial
provision is necessary to ensure proper implementation of the law.
8
Announced on December 3, 2015, this plan for 2016–2015 has a budget of
100,000 inhabitants, 6 new palliative care units and 30 new mobile palliative
care teams in 2016, as well as to develop training and research and create a
9
Article 14 for the law no 2016-87 of February 2, 2016.
 revueneurologique172(2016)719–724
5. For neurology, what are the implications of this new
legislation?
5.1. Certain questions remain unanswered and will require in-
depth work and research
Questions concerning advance directives are:
one might wonder about the intrinsic value of advance directives
depending on whether they are drafted by a person suffering from a
severe illness or not. While it might appear reasonable, or desirable, to
anticipate future events when one has a serious illness or perceives
oneself as a ‘‘sick person’’, questions arise when it comes to one’s
capacity to project into a future life-terminating state that might
develop outside any context of illness, e.g. survival despite severe
alteration of consciousness after head trauma or stroke, or cardiac
arrest. The law does not distinguish
between these two types of directives despite the fact that in
its opinion statement no 121, the CCN10, the national governmental
consultative advisory council on bioethics issues, distinguished two
possible types of anticipation depending on the circumstances. The first
type of directive, termed ‘‘anticipated statement of will’’, is written
outside a context of illness, and is designed basically to expose one’s
desires in terms of living environment and mode of treatment. For
individuals with a serious or potentially fatal disease, directives serve as
a tool to facilitate dialogue between caregivers and the sick person.
They are designed to anticipate medical decisions, taking into account
disease progression and the different options as they develop;
there is a risk that advance directives could be underused or misused
because of certain insufficiencies involving time, availability, or
caregiver training in communication skills for complex situations.
There is a risk such directives would become – and unfortunately this is
already the case in many situations – simply another administrative
form that is proposed but not always completed with adequate care.
There could also be a paradoxical effect, i.e. anticipated directives
becoming legally binding even when not issuing from a progressive
collective process of elaboration. Under these situations, it is most
likely that many healthcare professionals would lack sufficient
commitment, meaning that very few patients would draft advance
directives. Before advance directives can become truly invested as an
opportunity to aid the seriously ill along their personal journey,
healthcare professionals (especially physicians) will need education in
communication skills for complex situations. The ability to implement
such skills must be recognized as a genuine act of care;
it must also be kept in mind that for many patients, drafting advance
directives is a difficult, potentially impossible, task. There is no reason
that a sick person must write advance directives. One’s capacity to
anticipate necessarily limits one’s ability to foresee the future that, by
definition,
10
CCNE [Comite´ consultatif national d’e´thique]. Avis 121 [Fin de vie,
autonomie de la personne, volonte´ de mourir, 1 er juillet 2013]. End of life,
personal autonomy, will to die. July 1, 2013.
723
no one can predict. Consequently, an advance directive cannot be
construed as an end in itself; it is simply a means by which seriously ill
individuals can express their desires about their final journey. Advance
directives can be revised at any time, which means that all sick persons
should be invited regularly to rethink their directives as their disease
evolves.
Questions concerning sedation are:
when reference is made to the possible use of continuous deep sedation
‘‘as requested by the patient in order to avoid suffering’’ or ‘‘when the
patient presents suffering refrac-tory to treatments’’ (Article L. 1110-5-
2), isn’t there the possibility that this could lead to the belief that
sedation can treat suffering? Letting individuals believe that suffering is
a symptom that can be controlled by a drug is simplistic and dangerous.
Of course, continuous deep sedation may be considered as a coma
equivalent; that as such it induces a state of unconsciousness; but it
does not suppress psychic life and probably does not suppress suffering.
On the grounds that we are eliminating suffering, we must not satisfy
ourselves with eliminating its expression;
according to the law, this continuous deep sedation until death can be
implemented in the patient’s home, in a healthcare institution, or in a
nursing home, raising certain questions concerning feasibility,
surveillance and follow-up. The appropriate medications are generally
reserved for their anesthetic effect, meaning that in this context they are
to be used for other purposes. At the least, professional guidelines for
good clinical practices are needed;
accepting to implement continuous deep sedation until death for a
person who alleges refractory existential suffering or for a person who
wants to avoid all suffering while waiting for death will raise questions
for certain physicians concerning the legitimacy of the request.
Nevertheless, it is important to always ask the following question: what
gives a doctor the authority to oppose the request of a person who
knows he/she is going to die within a very short time and who wants a
drug-induced coma and the interruption of potentially life-sustaining
treatments?
as was mentioned in the preceding chapter, the law states that when the
short-term prognosis is death a patient has the right to have continuous
deep sedation until death implemented at his/her request. ‘‘Short-term’’
will have to be defined, here again via professional guidelines. In
practice, we do not know how to maintain continuous deep sedation
beyond a few hours or days. And fundamentally, what is the
signification of an ‘‘end-of-life’’ that lasts for several days or weeks?
finally, while it is essential to carefully differentiate between sedation
and euthanasia, we must be vigilant concerning the use of this right to
sedation. A priori, continuous deep sedation does not cause death but is
designed to make more bearable this ultimate moment of existence. But
a utilization that is not adapted to this objective, or the use of
increasingly high doses, may accelerate the advent of death. As we can
see in neighboring countries, the risk of deviating towards euthanasia-
seda-tion is far from theoretical [3].
724 revueneurologique172(2016)719–724

5.2. End-of-life of persons with neurodegenerative disease or severe
brain damage
The paradox of progress is that it produces, correlatively, situations of
complex survival including periods of ‘‘long dying’’ that raise questions
concerning the meaning of ‘‘end-of-life’’.
point where we interrupt lives that we will have contributed to prolong?
Let us hope that the development of an ethical reflection and its
integration into medical training and practices will help each of us ponder
the validity of instituting a treatment simply because we know how to,
when the final effect would question the sense of life itself.

Current advances, and especially perspectives for the treatment of

neurodegenerative diseases, should oblige us to anticipate new end-of-life Disclosure of interest
configurations. As has been seen in the field of oncology over the last 15–
20 years, it is quite possible that the corollary of progress in neurology The author declares that he has no competing interest.
(cure for neurological diseases or survival with sequelae having little
impact on quality-of-life) will be, in certain cases, long-term survival of
references
totally dependent persons with severely altered cognitive capacity. These
situations raise, and will inevitably continue to raise, the question of the
sense of such survival: in this context and considering future
[1] CCNE. End of life, personal autonomy, will to die [Fin de vie, autonomie
developments, it can be expected that persons will formulate advance
de la person, volonte´ de mourir]. Opinion no 121; 2013.
requests for assisted suicide or euthanasia.
[2] Blanchet V, Viallard ML, Aubry R. Se´dation en me´decine palliative :
recommandations chez l’adulte et spe´cificite´s au domicile et en
Thus, medicine can contribute paradoxically to the generation of long ge´riatrie. MEDPAL 2010;9:59–701.
periods of terminal survival that raise the question of the ultimate sense of [3] Mattelhauer X, Aubry R. Pratique de la se´dation aux Pays-Bas : preuve
du de´veloppement des soins palliatifs ou de´rive euthanasique ? Med
life. It is in this context that healthcare professionals will be confronted
Palliat Soins Support Accompagnement Ethique 2012;11:133–41.
with a question of transgression: will we, should we, come to the