on clinical examination features and structural
imaging may fail to identify such changes in
brain dynamics arising in the setting of abnor-
mal connective topologies induced by severe
injuries.
ETHICS OF CLINICAL
DECISION MAKING AND
COMMUNICATION WITH
SURROGATES (J.J. FINS)
Decisions concerning care for patients with
severe disorders of consciousness necessarily
involve surrogates. Family members, friends,
or other intimates must make decisions about
care or its withdrawal. In this section, we con-
sider the special challenges faced by those
decision makers entrusted with the care of a
patient with a disorder of consciousness and
describe what practitioners might do to ease
their burden by improving communication.
Surrogate Decision Making,
Perceptions, and Needs
A surrogate decision maker is a person, other
than the patient, who directs care when the
patient is unable to provide consent. Under pre-
vailing legal and ethical norms, surrogate de-
cisions should be based on what is known about
the patient’s expressed choices when he or she
was able to give informed consent.
164
Thus,
surrogates should follow expressed wishes of the
patient when they are known and invoke sub-
stituted judgment, what is believed or inferred
about patient choices, when actual preferences
are unknown. In the absence of evidence of
prior wishes or known patient values, surro-
gates should invoke a best interests standard,
intended to represent what an average person
would do when confronted by prevailing cir-
cumstances.
When working with surrogates, the physi-
cian must determine who among many has
standing and priority.
165
A surrogate designated
by the patient through an advance directive
has precedence over other potential decision
makers because he or she was expressly chosen
by the patient. This exercise of patient self-
determination can take place through an ad-
vance directive, variably called a durable power
attorney for health care, health care agent,
or health care proxy.
166
Alternately, a patient
without a designated surrogate can express
preferences in a living will. A living will details
patient wishes, but does not authorize a des-
ignated spokesperson. If there is no designated
surrogate, family members and close friends
are selected in order of their relationship
to the patient (spouse > parents > children >
siblings > other relatives > friends).
The importance of advance care planning, or
the use of living wills or health care proxies, has
been inextricably linked to prominent legal
cases involving patients in a VS. In the Cruzan
case, which considered the withdrawal of arti-
ficial nutrition and hydration in a young woman
in a persistent VS, Justice Sandra Day O’Con-
nor first suggested a greater role for advance
care planning, a mechanism for patients to ex-
press their wishes before decisional incapacity.
The lack of such an advance directive became
part of the conflict in the now well-known case
of Terri Schiavo, who remained in a permanent
VS following a cardiac arrest and anoxic brain
injury in 1990.
167
Her case gained national
prominence in 2003 and again in 2005 when
family members disputed the propriety of re-
moving her feeding tube. Multiple courts ruled
that her prior wishes were known and that her
husband, who advocated the removal of her
percutaneous gastrostomy, was the appropri-
ate surrogate decision maker under state law.
Nonetheless, the tragedy of that family dispute
illustrated the utility of talking about prefer-
ences in advance and sharing wishes with
one’s family and friends. Prompting discus-
sions ahead of incapacity is a lesson for the
general medical and neurology outpatient clin-
ics as much as it is for the neurology ICU.
168,169
Even without an advance directive surrogate
designate, the ethical challenge of determining
the best course of action remains. Surrogates
balance their knowledge of the patient’s pref-
erences with their own sense of prognosis and
likely outcome,
170
as it is unusual for the pa-
tient to have anticipated the precise set of cir-
cumstances in advance. When the patient is
comatose, surrogates may step forward and au-
thorize a DNR order and pursue a less aggres-
sive course of care than in an awake patient.
However, in one study, only 32% of patients
had consented to their own DNR orders; in the
remaining cases, 64% had been put in place by
a surrogate, and 5% by physicians alone.
171
This
376
Plum and Posner’s Diagnosis of Stupor and Coma
figure is comparable to a study a decade earlier
in which only 30% of patients discussed resus-
citation with a physician prior to a cardiac ar-
rest.
172
Thus, the decision on DNR orders
frequently rests on the shoulders of the surro-
gate.
Because perception of outcome hinges so
strongly on the question of recovery of con-
sciousness, the physician must communicate to
surrogates the best estimate of the likelihood
and degree of recovery, or conversely the inev-
itability of death or permanent VS. This is eas-
ier said than done as indicated in previous sec-
tions of this chapter. Moreover, it is important
to recognize that the right to die (i.e., the
negative right to be left alone) was established
through cases involving patients in the VS.
173
In addressing the case of Karen Anne Quinlan
in 1976, the New Jersey Supreme Court asser-
ted that the justification of the removal of her
ventilator was predicated upon her irreversible
loss of a ‘‘cognitive sapient state. ’’
174,175
The
identification of VS with medical futility al-
lowed surrogates to be granted the discretion
to withdraw life-sustaining therapy.
176
This historical legacy may lead in some cases
to a diagnostic and therapeutic nihilism, in
which diagnostic categories that are relevant
are conflated and confused. VS is but one of
many disorders of consciousness; patients who
are vegetative may progress to permanence or
move on to the minimally conscious state or
another level of brain function. Because of the
importance of consciousness to surrogate de-
cision makers and the value placed on the
‘‘cognitive sapient state,’’ it is important to
strive toward diagnostic accuracy and preci-
sion. This is particularly important as evolving
knowledge indicates that obtaining an accurate
diagnosis of MCS may strongly alter prognosis
for some patients, particularly those recover-
ing from traumatic brain injury.
77,79
As more
attention is paid to the varying outcomes of
coma, it is likely that practice norms will be
influenced.
Professional Obligations
and Diagnostic Discernment
It is the professional obligation of the physician
caring for individuals with a disorder of con-
sciousness to bring evolving scientific knowl-
edge to the bedside and use it to inform the
decision-making process with surrogates. It is
especially critical that surrogates understand
that the probability of the recovery of con-
sciousness is dynamic and depends on consid-
erations of etiology of injury, structural patterns
of brain injury, and duration of the clinical state.
Physicians should use their knowledge to or-
chestrate strategic discussions at key clinical
milestones that have prognostic and diagnos-
tic importance, recognizing that for the most
part, these categorizations remain crude and
mostly descriptive. Because of the rudimentary
nature of this emerging nosology, it is inevitable
that patients with variable injuries and out-
comes will be included in diagnostic categories
that are too broad and heterogeneous. This can
make prediction difficult and undermine laud-
able efforts to achieve greater diagnostic refine-
ment and precision.
177
For these reasons, a delicate balance needs
to be achieved between too quickly foreclos-
ing any prospect of recovery and the offering
of false hope. Even ‘‘favorable’’ outcomes,
marked by survival and recovery, force difficult
quality-of-life choices for those whose exis-
tence has been irrevocably altered by a disor-
der of consciousness and most often an alter-
ation of the self. Translating the medical facts
that are provided by clinicians into such choi-
ces is the work of surrogates.
The physician’s function, assisted by mem-
bers of the interdisciplinary team needed to
care for these patients and the families, is si-
multaneously to preserve the right to die while
also affirming the right to care.
177
This means
respecting the decisions of surrogates when
they believe that ongoing life-sustaining ther-
apy would result in an existence that would
have been unacceptable to the patient or incon-
sistent with their prior wishes. Patients should
receive the appropriate amount of clinical care,
diagnostic and interventional, that allows for
informed decisions about treatment options,
whether it be under the rubric of an informed
consent or informed refusal of care.
Time-Delimited Prognostication
and Evolving Brain States: Framing
the Conversation
To ensure that these decisions are indeed in-
formed, it is essential to ensure that there is
proper information flow between clinical staff
Consciousness, Mechanisms Underlying Outcomes, and Ethical Considerations
377