Ethical Approach to Surrogate Consent for

Hemicraniectomy in Older Patients With Extensive Middle

Cerebral Artery Stroke
Timothy G. Lukovits, MD; James L. Bernat, MD
See related article, p 2830.
he recently published Decompressive Surgery for the
Treatment of Malignant Infarction of the Middle Cerebral
Artery (DESTINY) II trial1 has reignited the controversy over
performing hemicraniectomy in the elderly population, highlighting the question of how preference-based medicine2 should
be applied to patients with severe stroke. The trial concluded
that hemicraniectomy increased survival without severe disability.1 The surgically treated group had better scores across
multiple outcome measures including the percentage with no
to moderately severe disability (score of 04 on the modified
Rankin scale) and mean scores on scales assessing stroke severity (the National Institutes of Health Stroke Scale [NIHSS]),
activities of daily living (Barthel Index), quality of life (the
Short Form-36 Health Survey scales), depression (Hamilton
Depression Rating Scale), and self-assessment of overall
health (EuroQOL scales).3 However, the majority of survivors
required assistance with most bodily needs.1 No patients in the
surgical group had zero or slight disability, one third were dead
at 6 months, and nearly one third were bedridden, incontinent,
and requiring constant nursing care and attention.
The high degree of outcome disability after hemicraniectomy in older patients raises vexing ethical issues of communication with and consent by surrogate family members.
Before this study, one third of hemicraniectomy procedures
performed for ischemic stroke were done in patients >65
years of age, and the overall rate has increased over the past
decade.4,5 As the population ages and stroke care becomes
more aggressive and better organized regionally, the number
of eligible patients will likely continue to rise.4 Here, we offer
an ethical framework for consent for hemicraniectomy that
integrates outcome data with patients values and preferences.
The ethical foundation of medical decision making is
informed consent. Clinicians require the informed consent of
capacitated patients or of the lawful surrogate decision makers of incapacitated patients except in emergency situations
where standard accepted therapy may be given under a doctrine of presumed consent. Because patients with stroke in
whom hemicraniectomy is being considered are nearly always

incapacitated by stupor, coma, or aphasia, a surrogate decision

maker must provide consent.
The elements of informed consent that make surrogate
decision making valid are that the surrogate must be given
adequate information, namely that which a reasonable person
needs to make a medical decision. Reasonable people need to
know their diagnosis, prognosis, and choices of therapy with
a general description of the risks and benefits of each option.
This information should be communicated objectively without
exaggeration or influenced by a framing effect and presented
compassionately with realistic expectations. Physicians cannot coerce the surrogate whose decision must be made freely.6
Surrogate decision making in hemicraniectomy has several obvious limitations. Clinicians may not fully understand
the hemicraniectomy outcome data or apply them correctly
to an individual patient. Physicians technical explanations of
hemicraniectomy and its outcomes may not be understandable by unsophisticated surrogates. Physicians may subconsciously insert their own biases of the values of outcomes in
framing their discussion. And surrogates may feel coerced by
the urgency of the decision and the existential quandary of
choosing between death and severe disability. Under these circumstances, surrogates often rely on the physicians opinion
of what should be done. Medical ethics permits physicians
to beneficently and gently guide surrogates to make the best
decision. This appropriate counseling role of physicians to use
their experience, knowledge, and judgment becomes objectionable as paternalism only if the physician disenfranchises
the surrogate by unjustifiably overruling his decision.
Physicians should instruct surrogates to follow established
ethical and legal standards of decision making. The best decision usually is the one which the patient would have made if
the patient were able to decide because this standard respects
the patients autonomy. The physician should first ask the surrogate if the patient has written advance directives or has spoken about his preferences in this particular circumstance. If
so, these expressed wishes should be followed. This standard
is rarely usable because most patients cannot have anticipated
a particular medical event to provide specific guidance for it.

Received June 10, 2014; accepted July 21, 2014.

From the Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH.
Correspondence to Timothy G. Lukovits, MD, Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756. E-mail
timothy.g.lukovits@hitchcock.org
(Stroke. 2014;45:2833-2835.)
2014 American Heart Association, Inc.
Stroke is available at http://stroke.ahajournals.org

DOI: 10.1161/STROKEAHA.114.005923

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2833

2834StrokeSeptember 2014
Next, the physician should ask the surrogate to try to reproduce the decision the patient would have madebased on the
surrogates understanding of the patients values and preferences for various treatmentsto fulfill the standard of substituted judgment. Although this standard has been shown to
be accurate in only 2/3 of cases,7 it is usually a better option
than the alternatives. Only if the patients preferences and
values are unknown should the physician ask the surrogate to
balance the benefits of hemicraniectomy against its burdens to
thereby reach a best interests judgment.
This idealized ethical decision-making framework encounters problems when applied to obtaining surrogate consent
for hemicraniectomy. Surrogates may not know if the patient
would prefer a life of significant disability to an earlier death
and be fearful of making the wrong decision in an emergency
situation in which there is no time for thoughtful reflection or
to discuss the decision with other family members. Physicians
may inappropriately insert their biases about their preference
for death versus disability by the words they use and how they
frame the discussion. And there are no guidelines that govern
when physicians should not even offer hemicraniectomy as a
treatment option if, for example, the patient is >80 years old
and has preexisting dementia, a poor quality of life, or significant medical comorbidities. It is ethically acceptable for neurologists to select patients for whom hemicraniectomy may be
offered to surrogates by eliminating those for whom it is not
a reasonable treatment option, but this preselection must be
evidence based and therefore medically justifiable.
Experienced neurologists know that the context in which
urgent hemicraniectomy becomes a treatment option is a
perfect storm for difficult decision making. Stroke catches
people unprepared and often away from home without family nearby, there are time constraints limiting the benefit to
the procedure (usually recommended within 48 hours of
onset), and the prognosis is uncertain. The patient is unable
to participate in the discussion, advance directives usually
are vague and ambiguous to apply to this specific situation,
the lawful surrogate decision maker is often unavailable, and
the informal family surrogates often cannot be assembled. In
this setting, the family decision maker feels forced to make
a rapid and draconian choice between death and severe disability. To make the decision process even more challenging,
it may be difficult to apply the DESTINY II data. The patient
under consideration for hemicraniectomy may not be as good
a surgical candidate because those enrolled in the DESTINY
II trial whose median age was 70 years and excluded patients
with preexisting disabilities. Finally, families may arrive from
another hospital with the expectation that hemicraniectomy
will be performed once a patient has been transferred to a specialized facility, which adds another complicating factor.
The DESTINY II trial challenges us to reflect on the biases
about disability that both surrogates and clinicians bring to this
discussion and how these subjective factors could lead to inappropriate decision making.8 One common bias is the focusing
illusion in which people disproportionately emphasize certain
factors such as having a gastrostomy tube, whereas ignoring
other arguably more important factors that may make life satisfying. Another common bias is the failure to appreciate the
disability paradox in which a disabled patient reports a higher

quality of life than do healthy people who imagine themselves

in similar circumstances.9 Interestingly, in the DESTINY-S
study, the degree of bias among clinicians varied by country.10 Poignant accounts from survivors of severe stroke and
hemicraniectomy challenge our assumptions about what kind
of life stroke survivors find meaningful and emphasize the
importance of social support and long-term postoperative
rehabilitation therapies to assure quality outcomes.8,11,12
Applying the principles of palliative care and medical ethics, the field of neurocritical care has yielded a road map that
helps identify and limit biases, enhances refinement in how we
prognosticate and view patient outcomes, and highlights a better way to conduct a fruitful discussion about life-sustaining
therapies including hemicraniectomy.1319 This work calls us to
be more mindful of our biases, as well as surrogates biases,
and the power specific words can exert on surrogate decision
makers and influence their decisions (eg, withdrawal of care
and nursing home). As we develop this road map, we should
consider how new technologies can assist or hinder appropriate
decision making. For example, educational tools for patients
and surrogates could be developed to facilitate more appropriate decision making in hemicraniectomy. Examples include
educational tools such as those used in understanding thrombolysis for ischemic stroke,20 including diagrams and flow
charts describing hemicraniectomy and the issues in prognosticating and considering different outcomes. Telemedicine consultations by stroke and neurocritical care experts can inject
expertise and authority that may be helpful to both surrogates
and clinicians. Simulation-based training can help clinicians
learn critical communications skills and strategies to improve
dialogue with surrogates and family members.
Neurologists offering hemicraniectomy can perfect the
practice of preference-based medicine by studying and learning these principles. Clinicians should be simultaneously
guided by their patients values and preferences for treatment
as expressed by their surrogates while mindful of the powerful influence on surrogate decision making that they exert by
their framing of decision making. The art of medicine is to
blend skillfully the objective presentation of factual hemicraniectomy outcome data with a rational and unbiased treatment
recommendation that allows the neurologist to work compassionately with the surrogate to understand the patients treatment preference to reach the best decision for the patient.

Disclosures
None.

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Key Words: decision support techniques ethics neurosurgery

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Ethical Approach to Surrogate Consent for Hemicraniectomy in Older Patients With

Extensive Middle Cerebral Artery Stroke
Timothy G. Lukovits and James L. Bernat
Stroke. 2014;45:2833-2835; originally published online August 12, 2014;
doi: 10.1161/STROKEAHA.114.005923
Stroke is published by the American Heart Association, 7272 Greenville Avenue, Dallas, TX 75231
Copyright 2014 American Heart Association, Inc. All rights reserved.
Print ISSN: 0039-2499. Online ISSN: 1524-4628

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