Innovations in CLINICAL NEUROSCIENCE
nnovations in CLINICAL NEUROSCIENCE [ V O L U M E 1 3 , N U M B E R 1 1 – 1 2 , N O V E M B E R – D E C E M B E R 2 0 1 6 ]12
ABSTRACT Managing individuals with chronic
disorders of consciousness raises
ethical questions about the
appropriateness of maintaining life-
sustaining treatments and end-of-life
decisions for those who are unable to
make decisions for themselves. For
many years, the positions fostering
the “sanctity” of human life (i.e., life
is inviolable in any case) have led to
maintaining life-sustaining
treatments (including artificial
nutrition and hydration) in patients
with disorders of consciousness,
allowing them to live for as long as
possible. Seldom have positions that
foster “dignity” of human life (i.e.,
everyone has the right to a worthy
death) allowed for the interruption
of life-sustaining treatments in some
patients with disorders of
consciousness. Indeed, most ethical
analyses conclude that the decision
to interrupt life-sustaining therapies,
including artificial nutrition and
hydration, should be guided by
reliable information about how the
patient wants or wanted to be
treated and/or whether the patient
wants or wanted to live in such a
condition. This would be in keeping
with the principles of patient-
centered medicine, and would
conciliate the duty of respecting both
the dignity and sanctity of life and
the right to a worthy death. This
“right to die” has been recognized in
some countries, which have legalized
euthanasia and/or physician-assisted
suicide, but some groups fear that
legalizing end-of-life decisions for
some patients may result in the
inappropriate use of euthanasia, both
voluntary and nonvoluntary forms
(slippery slope argument) in other
patients.
This review describes the current
opinions and ethical issues
concerning end-of-life decisions in
patients with disorders of
consciousness, with a focus on the
impact misdiagnoses of disorders of
consciousness may have on end-of-
life decisions, the concept of
“dignity” and “sanctity” of human life
in view of end-of-life decisions, and
the risk of the slippery slope
argument when dealing with
euthanasia and end-of-life decisions.
We argue that the patient’s diagnosis,
prognosis, and wishes should be
by ROCCO SALVATORE CALABRÒ, MD, PhD; ANTONINO NARO, MD, PhD; ROSARIA DE LUCA, MS, PhD; MARGHERITA RUSSO, MD, PhD; LORY CACCAMO, PhD; ALFREDO MANULI, MS; ALESSIA BRAMANTI; and PLACIDO BRAMANTI, MD
Drs. Calabró, Naro, de Luca, Russo, Manuli, A. Bramanti, and P. Bramanti are from the IRCCS
Centro Neurolesi “Bonino-Pulejo” in Messina, Italy; and Dr. Caccamo is from the Department
of Psychology, University of Padua, Padua, Italy.
Innov Clin Neurosci. 2016;13(11–12):12–24
FUNDING: No funding was received for the preparation of this article.
FINANCIAL DISCLOSURES: The authors have no conflicts of interest relevant to the content of this article.
ADDRESS CORRESPONDENCE TO: Rocco Salvatore Calabrò, MD, PhD; E-mail: salbro77@tiscali.it
KEY WORDS: Artificial nutrition and hydration; euthanasia; minimally conscious state; right to die; sanctity of life; vegetative state.
R E V I E W A N D C O M M E N T A R Y
The Right to Die in Chronic Disorders of Consciousness: Can We Avoid the Slippery Slope Argument?
mailto:salbro77@tiscali.it
Innovations in CLINICAL NEUROSCIENCE [ V O L U M E 1 3 , N U M B E R 1 1 – 1 2 , N O V E M B E R – D E C E M B E R 2 0 1 6 13
central to determining the most
appropriate therapeutic approach
and end-of-life decisions for that
individual. Each patient’s diagnosis,
prognosis, and wishes should also be
central to legislation that guarantees
the right to die and prevents the
slippery slope argument through the
establishment of evidence-based
criteria and protocol for managing
these patients with disorders of
consciousness.
INTRODUCTION
Consciousness is the condition of
normal wakefulness (opening and
closing eyes, preserved sleep-wake
cycle) and awareness (of the self and
environment) in which an individual
is fully responsive to thoughts and
perceptions, as suggested by his or
her behaviors and speech. 1,2
A
disorder of consciousness (DOC)
results when awareness and/or
wakefulness are compromised
because of severe brain damage. 3
In recent years, the advances in
diagnostic procedures and intensive
care have increased the number of
patients who survive severe brain
injury and enter a vegetative state
(VS) (also recently named
unresponsive wakefulness
syndrome)4,5 or a minimally
conscious state (MCS). These
entities represent the two main
forms of chronic DOCs. 6–9
In
particular, patients suffering from VS
are unaware of the self and the
environment and cannot show
voluntary, purposeful behaviors
because of severe cortico-thalamo-
cortical connectivity breakdown 10,11
that globally impairs sensory-motor
processing and cognition. On the
other hand, patients with MCS show
fluctuant but reproducible signs of
awareness and have a limited
repertoire of purposeful behaviors.
The best management of patients
in VS and MCS requires a correct
diagnosis, an evidence-based
prognosis, and the full consideration
of the medical, ethical, and legal
elements concerning DOC. 12
In
particular, patients with DOC need
artificial nutrition and hydration
(ANH) and, often, intensive
treatments. These issues evoke a
thorny ethical problem concerning
the therapeutic decision-making of
such patients (including the
continuation of life-sustaining
therapies) in view of the
uncertainties about their state of
consciousness, prognosis, and
personal wishes, with particular
regard to the end-of-life decisions
(ELD). 13
In fact, it is worth
remembering that the
implementation of any life-sustaining
treatment, including ANH, should
not be automatic when considering
that every individual should make his
or her own decisions regarding any
kind of therapy, according to the
ethical principles of autonomy and
the right of self-determination and
freedom. If an individual is unable to
make a decision, as in the case of
patients with DOC, a surrogate
should be empowered to ensure the
patient’s best interest and personal
wishes concerning ELDs. Therefore,
the right to lose health, become ill,
refuse treatment, live the end of life
according to one’s personal view of
life, and die should be guaranteed,
which is in keeping with human
dignity and the duty to protect
physical and mental health. 14
The right to die is further
supported by the following
arguments. 14–19
1. The right to (a worthy) life
implies the right to (a worthy)
death.
2. There is no reason to have a
“dedicated” right to die, given that
dying is a very natural
phenomenon, as is life.
3. Death is a private matter, and
other people have no right to
interfere if there is no harm to
others or the community (a
libertarian argument.
4. It is possible to regulate
euthanasia by proper laws, and
thus avoid the slippery slope
argument (SSA).
3. Euthanasia may avoid illegal acts,
given that euthanasia may happen
anyway (a utilitarian or
consequentialist argument) and
save the extreme despair of
suicide or homicide.
6. Death is not necessarily a bad
thing, owing to the naturalness of
the phenomenon, regardless of
whether it is induced.
7. Euthanasia may satisfy the
criterion that moral rules must be
universalizable, but
universalizability is a necessary
but not a sufficient condition for a
rule to be morally good.
8. Medical resources can be better
managed, and though this is not a
primary reason for the right to
die, it is a useful consequence.
On the other hand, an opposite
view states that life is a unique and
incorruptible gift that, in keeping
with the concept of the sanctity of
human life, must always be
preserved. Hence, each individual
has the moral duty to attend to all
the treatment necessary to preserve
life, with the exception of those
burdensome and/or disproportionate
to the hoped for or expected result
(i.e., life preservation), and to avoid
behaviors that can deliberately
hasten or cause death. 13,19–24
A possible middle ground is
represented by the concept that the
sanctity and the dignity of life are
somehow coincident; consequently,
there is no reason why accepting
euthanasia makes some individuals
worth less than others. Since it is
possible to regulate euthanasia by
proper laws, there is no risk of the
following: 13,19–24
1. Starting an SSA that leads to
involuntary euthanasia, thus
killing people who are thought
undesirable
2. Less than optimal care for
terminally ill patients (for
economic reasons)
3. Giving too much power to medical
staff in limiting the access to
palliative and optimal care for the
dying, pain relief, saving lives,
using euthanasia as a cost-
effective way to treat the
terminally ill, and limiting the
research for new cures and
treatments for the terminally ill
Innovations in CLINICAL NEUROSCIENCE [ V O L U M E 1 3 , N U M B E R 1 1 – 1 2 , N O V E M B E R – D E C E M B E R 2 0 1 6 ]14
3. Exposing vulnerable people to
pressure to end their lives (duty
to die) by selfish families or by
medical staff to free up medical
resources or when patients are
abandoned by their families.
At first glance, the problem of
ELDs in patients with DOC may
seem easy to solve. The supporters
of the dignity of human life claim
that since patients with DOC are
unconscious and therefore cannot
fully benefit from their rights, ELDs
should assumed by a third party
(e.g., those with whom the patient is
familiar, medical staff, ethics
committees, or courts).25 These
parties would make the ELDs, taking
into account the best interests of the
patient, his or her wishes, the right
to freedom, and the respect of
human dignity. On the contrary,
those who advocate the sanctity of
life deny any possibility to hasten (by
interrupting life-sustaining
treatments) or cause death (by using
euthanasia and physician-assisted
suicide) (PAS), because they believe
that life preservation is a social and
ethical duty. Moreover, patients with
DOC are in a very…
