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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 ]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: [email protected]

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?

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 frail and

vulnerable condition in which they

cannot express their thoughts on

these issues.13,19–24

Judgements in the Schiavo and

Englaro cases highlight this

controversy. In the Schiavo case,26

the argument was over whether Terri

Schiavo was in a persistent VS,

which had already lasted 15 years. It

began with her collapse in 1990, due

to cardiac arrest, and then her

husband’s initial court attempt to

have her feeding tubes removed in

1998. That was followed by court

battles between the husband and

Schiavo’s parents, who opposed the

removal the feeding tube. Her

feeding tube was removed several

times and then reinserted after more

court orders. It was removed for the

last time in March 2005 after the last

successful court petition by the

husband. Schiavo died 13 days later.

Likewise, Eluana Englaro27

entered a persistent VS in 1992

following a car accident, and

subsequently became the focus of a

court battle between supporters and

opponents of euthanasia. Shortly

after her accident, medical staff

began feeding Englaro with a feeding

tube, but her father “fought to have

her feeding tube removed, saying it

would be a dignified end to his

daughter’s life.” According to

reports, Englaro’s father said that

before the car accident, his daughter

visited a friend who was in a coma

and afterward told him, “If something

like that ever happened to me, you

have to do something. If I can’t be

what I am now, I’d prefer to be left to

die. I don’t want to be resuscitated

and left in a condition like that.” The

authorities refused father’s request,

but the decision was finally reversed

in 2009, after she had spent 17 years

in a persistent VS.

Of note, the United States

Supreme Court has stated that the

irreversibility of a DOC condition and

the clearly defined patient’s wish to

not live under such conditions should

both be clearly demonstrated in

order to withdraw the sustaining

therapies, including ANH.28,29 These

decisions are fully in keeping with

the right of freedom and self-

determination and with the

supporters of the right to life.

However, these are fiercely criticized

and hindered by the sanctity of life

supporters.13,19–24

Therefore, we consider whether it

is more ethical to respect human

dignity than to protect the sanctity

of human life at all costs. A correct

approach to this thorny ethical

dilemma requires taking into account

that there is a tangible uncertainty of

DOC diagnosis and prognosis,

consequently making it more difficult

to respect a patient’s rights properly

when making ELDs. Moreover, it is

still debated whether ANH should be

considered a fundamental (i.e.,

always due) or an aggressive therapy

(i.e., useless and bearer of further

suffering).22,24,30–34 Finally, the

motivation sustaining the right to live

with dignity and in respect of human

life sanctity must be analyzed

carefully, given that the access to the

right to die is a SSA. In fact, both the

withdrawal and the maintenance of

ANH may lead to a chain of related

events that may culminate in some

significant and potentially negative

effects on patients with DOC (e.g.,

death or unnecessary and prolonged

suffering). Liberalizing euthanasia

may lead to unnecessary application

in some cases. The strength of each

argument in favor or against ELDs

depends on whether one can

demonstrate a process that leads to a

significant effect. SSAs can be used

as a form of fear mongering in an

attempt to scare the audience, thus

ignoring the possibility of a middle

ground between the dignity and the

sanctity of human life. In this article,

we will review the key concepts of

the positions supporting the dignity

and the sanctity of human life in an

attempt to find a conciliating view to

solve the SSA.

DOC DIAGNOSES AND

PROGNOSES

When family members are faced

with an irreversible and hopeless

case of unconsciousness, leaving

their loved one in such a condition

may be unbearable for both the

patient and his or her family

members. The relatives of patients

with DOC live a paradoxical reality.

In fact, they live with a family

member who is both present

(inasmuch as he or she is awake)

and absent (unaware) and alive

(inasmuch as he can open and close

his or her eyes, breathe

independently, and make some

movements) and dead (given that he

or she cannot interact with the

family members or the

environment).35–37 These issues can

foster denial or misunderstanding in

the family members of their current

situation. For example, they may

deny that their loved one is in a VS

because they interpret spastic or

reflexive movements as signs of

improvement,6 thus imagining

chances of recovery that are not

supported by evidence-based

medicine. Given that the family

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 15

members may witness important

responses by the patient that have

not been observed by the clinicians,

the medical staff should attempt to

observe the patient with the family

members and involve them in the

patient evaluation. Assisting family

members in better understanding the

patient’s behaviors and level of

awareness is important and may

strengthen the family members’

relationship with the medical staff.38

Hence, the correct communication

of a proper diagnosis and a reliable

prognosis is essential for the best

management of a patient with DOC.

In fact, inaccurate diagnoses and

prognoses and disclosure of false

diagnostic information to families

may have serious ethical, medical,

and legal consequences regarding

the medical management of the

patient, the well-being of patient’s

family members, and ELDs.39,40 In

fact, an incorrect diagnosis and

prognosis may result in a false

expectancy for recovery by the

family members, the unnecessary

and potentially harmful life-support

prolongation of the patient, financial

and emotional resources being

withheld or withdrawn, resource

misuse and misallocation, and an

inappropriate rehabilitation or long-

term care facility enrollment.13

Nonetheless, identifying residual

awareness in unconscious patients

(thus differentiating VS from MCS)

and establishing a correct prognosis

are extremely challenging, owing to

the inadequate sensitivity of the

clinical and paraclinical approaches

currently available for DOC diagnosis

and prognosis.41–47 Even though the

rate of consciousness recovery varies

from eight percent to 72 percent

(but decreases to 20–30% in patients

persisting in comas longer than 24

hours),47 a severe brain injury may

result persistent unconsciousness for

many years. There have been cases

of emergence from DOC, even after

many years.48 Generally, recovery

from a metabolic or toxic coma is far

more likely than from an anoxic one

where the traumatic brain injury

(TBI) occupies an intermediate

prognostic position. A post-anoxic

coma is a state of unconsciousness

caused by global anoxia of the brain,

most commonly due to cardiac

arrest. The outcome after a post-

anoxic coma lasting more than

several hours is generally, but not

invariably, poor.47

About 40 percent of patients with

VS may be clinically misdiagnosed in

that they may be conscious but are

unable to manifest any signs of

consciousness.49–51 Such a condition

has been recently labeled functional

locked-in syndrome (FLIS),

whereby, using neurophysiological

and functional neuroimaging

approaches, clinicians are able to

record residual brain network

connectivity that is sustaining a

covert awareness.52 A patient with

FLIS is clinically similar to one with

VS, with the exception that the

former is aware of the self and the

environment but is unable to

demonstrate awareness or

communicate.6–9 This may due to the

deterioration of sensory-motor

processes, which support motor

function, rather than the breakdown

of cerebral connectivity.6–12,53,60

The low rate of correct diagnoses

and prognoses may depend on the

variations in scale application,

awareness fluctuation, and subjective

interpretation of clinical findings.

The use of paraclinical tests to

detect residual and covert signs of

awareness may help in better

managing patients with DOC and

consequently supporting their right

to ELDs. Nevertheless, different

paraclinical tests would be necessary

to confirm awareness since single

tests may suffer from the same

methodological bias that clinical

approaches do.39,40,54

ELDs AND THE DIGNITY OF

HUMAN LIFE

The thought of interrupting life-

sustaining treatments, including

ANH, may arise in family members

and caregivers when their loved one

suffers from a long-lasting and

potentially irreversible DOC

condition.34 The idea of hastening

one’s own death may occur when

one’s quality of life is poor or

unbearable (e.g., in the case of

physical pain and/or mental anguish)

and life is considered without dignity

(e.g., feeling there is no chance of

recovery, finding nothing that makes

life worth living, and perceiving life

as a burden to others).55–58 One might

consider that respecting the dignity

of life means respecting the dignity

of death and thus avoiding

unbearable and/or unnecessary

suffering or living in what one might

considered a handicapped and

hopeless condition. As stated by

Marc Augé,59 “To die without dignity

is to die alone, abandoned, in an

inhospitable and anonymous place, in

a non-place. To die without dignity

means to die, suffering needlessly or

to die tied up to a technical gadget

that becomes the sovereign of my

last days. To die without dignity also

means to die in isolation, surrounded

by insensitive people, soulless

specialists, and bureaucrats who

carry out their professional tasks

mechanically.”

Many authors22,24,30–34,60–62 criticize

using the interruption of ANH as a

way to hasten death because ANH

suspension inevitably leads to a

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