PE R S PE C T IV E
Treatment Decisions after Brain Injury — Tensions
among Quality, Preference, and Cost
Robert G. Holloway, M.D., M.P.H., and Timothy E. Quill, M.D.
M any patients with sudden
severe brain injury from
stroke, trauma, or cardiac arrest
die after family members and cli-
nicians decide, given a poor prog-
nosis, to withdraw treatment. Al-
though it’s difficult to estimate
precisely how prevalent this tra-
jectory to death is, as many as 60%
of deaths from stroke, heart dis-
ease, and traumatic brain injury
may involve some kind of treat-
ment withdrawal, which makes
it one of the most common path-
ways to death in the United States.
Treatment withdrawal in acute
brain injury differs from other
terminal trajectories in many re-
spects, including the fact that ag-
gressive treatment might allow at
least some patients to live for
months or years with continued
supportive care. Outcomes after
these decisions range from early
death to extreme debility seen by
some as “worse than death” to
substantial neurologic recovery,
and it is often difficult to predict
the outcome with certainty soon
after the brain injury occurs. In
the face of these value-laden de-
cisions and prognostic uncertain-
ties, treatment-withdrawal prac-
tices vary widely among intensive
care units (ICUs), institutions,
and geographic regions.1
This variation may be “unwar-
ranted” if it is not consistent with
the distribution of informed pref-
erences of patients. Research has
shown that preferences are often
incorrectly ascertained, and a re-
cent survey suggests that the re-
gional variations in the intensity
of end-of-life practices may not be
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Treatment Decisions after Brain Injury
readily explained by differences
in patients’ preferences.2 Since
there is no easy way to measure
the quality of treatment-with-
drawal decisions, we don’t know
how often patients are receiving
life-sustaining treatments they do
not value (overuse of services)
and how often they’re receiving
a comfort-care approach when
they would rather have received
aggressive life-sustaining therapy
(underuse of services). The pos-
sibility that decisions of such sig-
nificance are being substantially
influenced by factors other than
patients’ values and preferences
in light of their condition and de-
gree of impairment is worrisome.
To unravel the reasons for this
variation, we must explore some
potentially uncomfortable aspects
of clinical practice and health
care delivery. Providers may con-
sciously or unconsciously impart
their own views through their
framing of facts, potential out-
comes, options, and recommenda-
tions to obtain decisions aligned
with their own beliefs and values.
Many ICUs, hospitals, and geo-
graphic regions have their own
treatment “signatures,” reflecting
historical norms and entrenched
practice patterns. These norms
may also reflect the limited abil-
ity of providers and health sys-
tems to respond to patients’ vary-
ing cultures, health literacy levels,
and spiritual beliefs.3
Financial incentives may also
matter. Hospitals have a strong
financial incentive for performing
tracheostomies in brain-injured
patients — and insurers have a
strong financial disincentive —
since the procedure quintuples
the hospital’s diagnosis-related-
group reimbursement rate. On
the other hand, if there is no
tracheostomy, the hospital has a
financial incentive to discontin-
ue aggressive treatment, partic-
ularly if a prolonged hospitaliza-
tion at a fixed reimbursement
level is anticipated. Palliative care
programs, which otherwise tend
to lose money, can be partially
justified financially through in-
formal calculation (www.capc.org/
impact_calculator_basic) of the
costs the hospital avoids for ex-
pensive, relatively ineffective treat-
ments that might be forgone af-
ter consultation.
So what is the optimal ap-
proach to such decisions? We be-
lieve that patients or their surro-
gates should receive transparent,
timely, individualized, balanced
information that allows them to
make a genuinely informed choice
among the treatment options —
early tracheostomy to facilitate
early initiation of rehabilitation,
a time-limited trial of endotra-
cheal intubation (permitting defer-
ral of a decision for 2 to 3 weeks
to see whether the prognosis be-
comes clearer), or early withdraw-
al of treatment because of poor
odds of meaningful (to the patient)
neurologic recovery. Ideally, such
decisions would be made with the
patient’s family on the basis of
input from intensivists, neurolo-
gists, neurosurgeons, pulmonolo-
gists, and palliative care clinicians
and informed by data about over-
all prognosis and a timeline for
1757
PERS PE C T IV E
the clarification of neurologic sta-
tus (and the obtaining of second
opinions). Such decisions should
also be based on an understand-
ing of the patient’s values and
preferences as expressed either
informally or in an advance direc-
tive, given the degree of brain
injury (as assessed by neurologic
examination, imaging, evoked po-
tential, and serum biomarkers),
coexisting conditions, and pre-
existing functional status.
To achieve this optimal ap-
proach, we must first recognize
“patient centeredness” as an end
in itself and a legitimate aspect
of health care quality that must
be measured and improved. Espe-
cially in situations in which evi-
dence doesn’t provide clear verdicts
to guide treatment, evidence-
based medicine must be com-
bined with (and sometimes take
a back seat to) preference-based
medicine. In situations involving
significant trade-offs between a
patient’s quality of life and length
of life, quality of care cannot be
measured by the rate of death
alone; its assessment must also
include key information about
prognosis, morbidity, and patients’
preferences.
We believe that the develop-
ment, measurement, and evalua-
tion of techniques for shared
decision making should also be-
come a routine part of quality
assessment. New measures should
assess the extent to which pa-
tients and families understand
the key facts and the extent to
which their choices are consistent
with their reported preferences.
Although research has shown
that “decision aids” — tools that
help people become involved in
decisions by providing informa-
1758
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Treatment Decisions after Brain Injury
tion about options and outcomes
and clarifying their values — can
reduce the rate of elective surgery
by 25%, it is unclear how such
interventions would influence the
rate of treatment-withdrawal de-
cisions or tracheostomies.4
At the University of Rochester
Medical Center, we launched an
initiative to provide early consul-
tation about palliative care for pa-
tients with severe brain injury,
as part of routine ICU care. This
initiative resulted in earlier and
more systematic discussions with
families about prognosis, patients’
values, and acceptable outcomes.
After implementation, there was
a small but significant decrease
in the number of tracheostomies
performed and an increase in
the number of patients from
whom mechanical ventilation was
withdrawn without tracheostomy.
Families were satisfied with the
quality of care and the choices
they were given, but the process
had a significant negative effect
on the hospital’s bottom line be-
cause of the dramatically reduced
reimbursement.
As health care is reformed,
incentives will need to be better
aligned so that payers, providers,
and hospitals are all motivated
to ensure that treatments are
in keeping with patients’ well-
informed choices. This will re-
quire a shift in our payment sys-
tem from a predominant focus on
volume and intensity of interven-
tions to payment that includes
consideration of shared decision
making and achievement of pref-
erence-sensitive outcomes. Such a
system would include enhanced
payment for thoughtful conversa-
tions with patients and families
about the delicate, complex, and
n engl j med 362;19  nejm.org  may 13, 2010
The New England Journal of Medicine
emotionally demanding decisions
required to achieve fully informed
choice in life-changing, unfamil-
iar, and often terrifying situa-
tions. To move further in this di-
rection as a culture, we must get
well beyond “death panel” rhet-
oric to a more systematic con-
versation about the potential for
invasive medical treatments both
to do good and to harm patients
toward the end of life.
More research is needed on in-
terinstitutional variation. In the
best hospitals, there should be
some early tracheostomies, some
early withdrawals, and some time-
limited trials of endotracheal in-
tubation, depending on the case
mix and the preferences of pa-
tients and their families. Institu-
tions that are outliers should be
studied closely. Parallel research
should develop a credible evidence
base of prognostic information
using outcomes that are mean-
ingful to patients and should as-
sess whether improvement in
advance care planning can mini-
mize anxiety and improve the
quality of decisions.
Meanwhile, clinicians should
improve their ability to have pref-
erence-based discussions with the
families of patients with sudden,
severe brain injury.5 Although pro-
viders should make recommenda-
tions based on knowledge about
the prognosis and the patient’s
values and preferences, they should
also develop a habit of reflective
questioning (e.g., “Do I have a
clear understanding of the likely
outcomes?” “Do I fully understand
the patient’s values?” and “Have
I framed the options in compre-
hensible ways?”) while helping
decision makers recognize that
preferences may change over time.
PE R S PE C T IV E Treatment Decisions after Brain Injury

These discussions require physi-
cians to be mindful not only of
their patients’ values, thoughts,
and feelings but also of their own
biases and predilections.
Disclosure forms provided by the au-
thors are available with the full text of this
article at NEJM.org.
From the Department of Neurology (R.G.H.)
and the Palliative Care Program (R.G.H.,
T.E.Q.), University of Rochester Medical 3. Loggers ET, Maciejewski PK, Paulk E, et al.
Center, Rochester, NY. Racial differences in predictors of intensive
end-of-life care in patients with advanced
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lenges in end-of-life care in the ICU: state-
ment of the 5th International Consensus
4. O’Connor AM, Wennberg JE, Legare F, et
al. Toward the ‘tipping point’: decision aids
Conference in Critical Care: Brussels, Bel-
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5. Epstein RM, Peters E. Beyond informa-
2. Barnato AE, Herndon MB, Anthony DL, et
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