survival and functional status do not translate
easily into choices about human values. Sharing
prognostic probabilities is not, in itself, suffi-
cient to improve the deliberative process or to
effect outcome decisions.
Given the complexity of the decision-making
process, this is not wholly unexpected. The qual-
ity of how information was conveyed is difficult
to assess and may be as critical as what has been
conveyed. Families may be distrustful of clini-
cians and systems of care that are not designed
for longitudinal chronic care.
177
They may have
been the recipients of misinformation about
the patient’s brain state and be wary of family
meetings that they worry might try to engineer
a decision to withhold or withdraw care.
These would be formidable challenges even
if there were continuity of care and ongoing
doctor-patient/family relationships. In the
setting of shifting venues of care from the acute
hospital setting to rehabilitation and long-term
care facilities, the challenge of building trust is
formidable. To help build such relationships, it
is critical to be empathic and supportive and try
to imagine what has eloquently been described
as ‘‘the loneliness of the long-term caregiver’’
191
faced with social isolation and family members
whose injury has altered them and their rela-
tionships with those who hold them dear. These
longitudinal stresses and the dependency of
loved ones, coupled with the prognostic un-
certainties, require compassion when working
with families touched by a disorder of con-
sciousness.
Surrogates will articulate a broad range of
preferences depending on the patient’s values
and their own sense of what constitutes propor-
tionate care, from the rejection of brain death
to the decision to remove artificial nutrition and
hydration in a patient who is in a minimally
conscious state. In most cases, however, most
surrogates will struggle with the more nuanced
question of the degree of loss of self that would
make a life worth living.
This is a highly personal question. Families
may benefit by your asking them to consider
the ability to relate to others in the context of a
broader consideration about the goals of care.
This level is not reached until the patient has
recovered to the upper end of MCS or emerged
from that state. Although all may not agree with
the centrality of functional communication,
this may be a helpful goal of care when speaking
with family members. Appreciating the cen-
trality of functional communication will also
help to identify those patients who retain this
ability but need assistive devices or special
techniques to relate to others.
96
One of the most
egregious diagnostic errors that can be made in
this area of clinical practice is to mistake a
locked-in patient for one who is vegetative.
98
Locked-in patients retain the ability for func-
tional communication but need to be recog-
nized in order to mobilize emerging technol-
ogies that can correlate eye movements, or
even electrical brain activity, to the choice of
letters on a computer screen, and thereby help
locked-in patients to communicate.
94,192
Working toward the achievement of func-
tional communication can also help delineate
objectives and time frames against which this
level of function needs to be achieved lest it
simply remain an elusive hope. For example, if
it is agreed that functional communication is a
goal of care, it might be prudent to continue to
follow a patient for a year following traumatic
injury in order for a patient to have the greatest
chance of moving into the minimally conscious
state from which a capability of functional com-
munication might take root. If a patient re-
mains vegetative a year after injury, the sub-
stantially reduced chances of attaining the
communicative goal would help support a de-
cision to withdraw care.
In all of these conversations, it may be help-
ful to reach out to the hospital’s ethics com-
mittee, which will have additional expertise to
help surrogates interpret technical informa-
tion, such as patient diagnosis and prognosis,
in light of the patient’s prior wishes, prefer-
ences, and values.
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