and surrogates when clinical findings warrant
discussion or when a prognostic milestone is
reached. How much information is conveyed to
achieve this objective and how determinative it
can be will depend upon clinical circumstances.
For example, it may be justified to provide an
early and definitive prognosis of permanent un-
consciousness or death while a patient is coma-
tose following an out-of-hospital cardiac arrest
and if there are clear negative prognostic pre-
dictors including loss of pupillary function and
corneal reflexes and bilateral absence of
somatosensory-evoked responses.
In contrast, it would be inappropriate, and
premature, to offer a conclusive prognosis in the
comatose traumatic brain injury patient who
demonstrates brainstem function and appears to
be moving quickly into VS. The rate of recovery
of such patients may warrant a cautiously opti-
mistic approach
70
delineated by a prognostic
time trial in which the clinician gives a time-
delimited prognosis. Time-delimited prognoses
are contingent upon the patient’s continued
evolution by certain temporal milestones.
To prepare for and organize such discussions
with surrogates, we focus on major clinical and
temporal milestones, which are important occa-
sions for speaking with surrogates about the
patient’s current status and goals of care.
Brain death involves the most straightfor-
ward decision making. In brain death, there are
no clinical goals of care as the patient cannot
benefit from further therapeutic efforts and the
focus for the practitioner should be to commu-
nicate these facts and address specific religious
or moral concerns in individual cases. Although
widely accepted in professional circles, the con-
cept of brain death is not well understood
among lay people when consent for organ do-
nation is sought.
178
A more challenging issue is
that some segments of our society reject this
definition of death, most notably members of
some orthodox religious groups and others with
cultural roots in Asia, most notably Japan, which
has only recently legalized brain death deter-
minations.
179,180
Two states, New Jersey and
New York, have accommodation clauses to ac-
commodate religious and moral objections to
determination of death by brain death test-
ing, with New Jersey exempting this standard
when it would violate religious beliefs. Working
with surrogates who reject brain death stan-
dards requires cultural sensitivity and the use
of cultural intermediaries to enhance commu-
nication.
181
When speaking with surrogate decision mak-
ers for a comatose patient, it is important to be as
specific about potential outcomes given the na-
ture and etiology of the causative event or pro-
cess while leaving open the indeterminacy of
potential recovery based on time-limited obser-
vations of brain state. Because the exact fate of
an individual patient for recovery or permanent
unconsciousness is often indeterminate, the evo-
lution of brain states from coma to vegetative and
minimally conscious states to recovery without
independence to full recovery needs to be stres-
sed. The time evolution of states is often not
appreciated by surrogates who may be unduly
pessimistic or optimistic. At this juncture, it may
be prudent to caution surrogates to avoid mak-
ing a potentially premature decision and waiting
until prognostication can be informed by how
and when the patient evolves from coma.
Progression from coma to the vegetative state
does not herald additional improvement and re-
covery. This is a natural state of progression in
nearly all comatose patients, and movement into
VS is an important clinical milestone that re-
quires explanation. Surrogates need to appreci-
ate that the behaviors that are seen in VS, such
as sleep-wake cycles, blinking, roving eye move-
ments, or the startle reflex, are not purposeful
and do not indicate consciousness or awareness
of self, others, or the environment.
182
This is a
hard concept for lay people to understand. It
can be explained and emphasized that these are
automatic behaviors, much like breathing and
the maintenance of a heartbeat, controlled by
brainstem activity. Making these distinctions
is important when the patient first enters VS,
lest these behaviors be understood as evidence
of awareness or consciousness.
Discussion should emphasize that although
VS, which is as yet unmodified, may become
labeled as persistent once it has persisted for
1 month, it is not predicted to be permanent
until 3 months following anoxic injury, or 12
months when the etiology is traumatic brain
injury.
183
In the competently assessed patient,
it is clinically and ethically appropriate to assert
that patients become permanently vegetative
when they pass through these time intervals.
66
Although the 1994 Multisociety Task Force
opined that ‘‘the persistent VS is a diagnosis
and that the permanent VS is a prognosis,’’
64,65
378
Plum and Posner’s Diagnosis of Stupor and Coma
because of exceedingly rare outlier cases of
late recovery from PVS, it is reasonable to
maintain the permanent VS as a viable diagnos-
tic category if an appropriate assessment has
been made to be sure that the patient is not in
the minimally conscious state.
The minimally conscious state presents per-
haps the greatest current challenge for commu-
nication of prognosis. Although MCS is a recog-
nized plateau from which patients may regain
consistent evidence of consciousness; an aware-
ness of self, others, and their environment; and,
most critically, the ability to engage in functional
communication, the wide clinical spectrum of
MCS
184
includes some patients who will perma-
nently remain unable to communicate yet re-
tain some aspects of awareness. Because of
this complexity, ethical norms for addressing
patients in MCS are only now evolving and
likely to change as diagnostic precision improves
and therapeutic avenues open for some sub-
categories of patients. The recovery of func-
tional communication appears to represent the
principal goal of many but not all surro-
gates
70,185
involved in the care of MCS patients
(additional endpoints include self-feeding, pain
control, and emotional reactivity, among oth-
ers). Surrogates may appropriately express the
concern that waiting for further recovery from
MCS may limit later opportunities to withdraw
care so as not to abridge the patient’s prospec-
tive wishes not to remain in VS or MCS if the
condition were to be permanent.
186
Addressing
these challenges will require further engage-
ment of surrogates, physicians, and policy
makers to consider palliative goals of care for
the severely brain-injured patient.
187
Emergence from MCS is a major mile-
stone for several key reasons. First, when pa-
tients arrive at this functional level, they are
able consistently to engage others. This will
make the question of whether or not the pa-
tient is conscious indisputable and not open
to charges of familial emotionality or denial.
Second, at this more recovered state of con-
sciousness, patients more fully recapture per-
sonhood lost as the result of their injury. As the
philosopher William Winslade has observed in
an early exploration of ethical issues follow-
ing traumatic brain injury, ‘‘Being persons re-
quires having a personality, being aware of our
selves and our surroundings, and possessing
human capacities, such as memory, emotions,
and the ability to communicate and interact
with other people.’’
187a
An additional point
about emergence from MCS is that the po-
tential for recovery is open ended and unpre-
dictable. Functional capability beyond mere
emergence is an area of active research with
emerging evidence that the level of early im-
paired self-awareness may be considered as a
marker for predicting complex functional ac-
tivities later in the course of recovery from
traumatic brain injury.
188
Thus, there is a need
for ongoing assessment of capabilities and
continuing physical and occupational therapy
for patients who have managed to recover to
this state.
A final note on diagnostics is in order. Fami-
lies may want confirmatory studies to convince
them of the solidity of the clinical diagnosis,
trusting the ‘‘objectivity’’ of a scan over the anal-
ysis of the clinician. Expectations are raised by
the advent of ‘‘neuroethics’’ articles in the pop-
ular culture asserting the potential of neuroim-
aging technologies to read minds and refine
marketing techniques.
189
Because of these
trends, surrogates may invest imaging tech-
nologies with more diagnostic ability than they
currently possess and seek clearcut answers
through this visual medium. It is important to
be clear that the diagnosis and assessment of
patients with disorders of consciousness is a
clinical task informed by a competent history
and neurologic examination. Although des-
perate families may request them, as of this
writing, neuroimaging studies are only applied
in research settings and at best can be ancillary
to clinical evaluation. They must be interpreted
in light of the history and physical examination.
It is important to be transparent when discus-
sing the capabilities of current technology to
assess brain states; indicate that this is an active
area of research and caution that many of the
experimental protocols portrayed in the media
are being utilized in patients who have already
been diagnostically assessed.
190
Family Dynamics and Philosophic
Considerations
Beyond questions about the process of making
decisions and the professional obligation to ex-
change information with surrogates, it is also
important to appreciate that probabilities about
Consciousness, Mechanisms Underlying Outcomes, and Ethical Considerations
379